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Survivorship care plans in cancer: a systematic review of care plan outcomes

Survivorship care plans in cancer: a systematic review of care plan outcomes FULL PAPER British Journal of Cancer (2014) 111, 1899–1908 | doi: 10.1038/bjc.2014.505 Keywords: survivorship care plan; cancer survivorship; follow-up care; psychosocial care; quality of life Survivorship care plans in cancer: a systematic review of care plan outcomes ,1,2,3 3 4 2,3 1,2,3,5 M E Brennan , J F Gormally , P Butow , F M Boyle and A J Spillane 1 2 Breast and Surgical Oncology at The Poche Centre, North Sydney, NSW, Australia; Northern Clinical School, Sydney Medical 3 4 School, The University of Sydney, Sydney, NSW, Australia; The Mater Hospital, North Sydney, NSW, Australia; Psycho-oncology Co-operative Research Group (PoCoG), The University of Sydney, Sydney, NSW, Australia and Royal North Shore Hospital, St Leonards, NSW, Australia Background: Eight years after the Institute of Medicine recommended survivorship care plans (SCPs) for all cancer survivors, this study systematically reviewed the evidence for their use. Methods: Studies evaluating outcomes after implementation of SCPs for cancer survivors were identified by searching databases (MEDLINE, EMBASE and Cochrane). Data were extracted and summarised. Results: Ten prospective studies (2286 survivors) met inclusion criteria (5 randomised controlled trials (RCTs)). Study populations included survivors of breast, gynaecological, colorectal and childhood cancer. Several models of SCP were evaluated (paper based/on-line, oncologist/nurse/primary-care physician-delivered and different templates). No significant effect of SCPs was found on survivor distress, satisfaction with care, cancer-care coordination or oncological outcomes in RCTs. Breast cancer survivors with SCPs were better able to correctly identify the clinician responsible for their follow-up care. One study suggested a positive impact on reducing unmet needs. Levels of survivor satisfaction with, and self-reported understanding of, their SCP were very high. Feasibility was raised by health professionals as a significant barrier, as SCPs took 1–4 h of their time to develop. Conclusions: Emerging evidence shows very few measurable benefits of SCPs. Survivors reported high levels of satisfaction with SCPs. Resource issues were identified as a significant barrier to implementation. The many long-term challenges, unmet needs and gaps in care in a dedicated appointment with a trained and competent health facing cancer survivors were highlighted in the Institute of professional (Hewitt et al, 2006; Khatcheressian et al, 2006; Medicine’s 2006 landmark report From Cancer Patient to Cancer National Breast and Ovarian Cancer Centre (NBOCC), 2010; Survivor: Lost in Transition (Hewitt et al, 2006). Issues for Khatcheressian et al, 2013; American Society of Clinical Oncology survivors include late effects of cancer treatment, lifelong & Cancer.Net, 2013). There is evidence that cancer survivors and emotional effects and tumour recurrence. The report also outlined their primary-care physicians are receptive to the concept service provision issues such as poor coordination of care, lack of of SCPs and there has also been strong support for them from communication between health practitioners and patient uncer- consumer groups (Hewitt et al, 2007; Kantsiper et al, 2009; tainty about who is responsible for providing long-term care Brennan et al, 2011; Livestrong Foundation Livestrong Care Plan (Hewitt et al, 2006). The ‘survivorship care plan’ (SCP), an (http://www.livestrongcareplan.org/); Marbach and Griffle, 2011; individualised treatment summary and plan for ongoing care, was Smith et al, 2011). proposed as a solution to many of these issues. Many cancer Enthusiasm for SCPs has been tempered by the realisation that treatment guidelines around the world now suggest or recommend their implementation is resource-intensive (Jefford et al, 2011; that every cancer patient be provided with an SCP at the Spain et al, 2012; Brothers et al, 2013). In the context of looming completion of treatment, and many suggest that this be delivered shortages in the oncology professional workforce, evidence of their *Correspondence: Dr M Brennan; E-mail meagan.brennan@sydney.edu.au Received 8 May 2014; revised 28 July 2014; accepted 18 August 2014; published online 14 October 2014 & 2014 Cancer Research UK. All rights reserved 0007 – 0920/14 www.bjcancer.com | DOI:10.1038/bjc.2014.505 1899 BRITISH JOURNAL OF CANCER Survivorship care plans in cancer benefit is crucial to justify recommendations for the routine and Studies identified from search of Additional studies identified universal implementation of SCPs (Erikson et al, 2007; Medical databases from other sources (reference Oncology Group of Australia, 2009). (n =2262) lists, n =5) This study systematically reviewed the evidence evaluating outcomes following development and implementation of SCPs in cancer survivorship. Total studies identified (n =2267) MATERIALS AND METHODS Studies for this evidence review were identified by searching the literature to the end of June 2013. MEDLINE and EMBASE Eligibility criteria: databases and the Cochrane Database of Systematic Reviews were Original study evaluating a written searched using the keywords ‘cancer’ and ‘care plan’, ‘survivorship multifaceted care plan for long-term or follow-up care care plan’ and ‘follow-up care’. Reference lists of background in survivors of early-stage cancer and articles and eligible studies were searched to identify additional reporting quality of life, satisfaction with care and/or oncological outcomes. studies. Eligibility criteria were as follows: original studies evaluating a standardised written care plan (defined as a structured multifaceted plan for long-term or follow-up care) in cancer survivors (defined as patients having completed treatment for early cancer with Abstracts meeting eligibility Excluded curative intent) and reporting quality of life, satisfaction with care criteria (n =2255 n =12 or care plan and/or oncological outcomes. Follow-up care was ineligible) defined as long-term medical care after treatment for early cancer. Studies evaluating care plans that included only one aspect of care (e.g., those evaluating a targeted dietary, psychological or exercise intervention) were not eligible, as the aim was to review the Excluded Full-text studies meeting (n =2 duplicate evidence relating to multifaceted care plans. Review articles and eligibility criteria studies) n =12 those focusing on patients with metastatic cancer were not eligible for inclusion. The screening process is summarised in Figure 1 (PRISMA flowchart) (Liberati et al, 2009). Titles, abstracts and then full-text publications were assessed against the pre-determined eligibility criteria for study inclusion. Studies included in review Unclear cases were discussed and resolved with a second n =10 investigator. Data were extracted by two independent reviewers and were summarised in evidence tables. Discrepancies were resolved with review by a third reviewer. Extracted data included Figure 1. Prisma Flowchart (Liberati et al, 2009). information about patient population (cancer type and demo- graphic data), the type of care plan evaluated, outcomes evaluated therefore presented (Grunfeld et al, 1996, 2006, 2011; Oeffinger and results of the study. Each included study was assessed for study et al, 2010; Jefford et al, 2011; Blaauwbroek et al, 2012; Spain et al, quality using the ‘QualSyst’ tool, a standard checklist of 14 items 2012; Blinder et al, 2013; Brothers et al, 2013; Hershman et al, (Kmet et al, 2004). This tool was developed for systematic reviews 2013). These included 2286 trial participants (mean 254 partici- and used in previous reviews (Kmet et al, 2004; St Jacques et al, pants (median 126) in each trial). 2008; Agarwal et al, 2013; Laidsaar-Powell et al, 2013; Wassenaar All studies were prospective studies of SCPs in cancer survivors et al, 2014). Each eligible study was given an overall quality score (Table 1) (Grunfeld et al, 1996, 2006, 2011; Oeffinger et al, 2010; (Kmet et al, 2004), independently by two investigators. Items Jefford et al, 2011; Blaauwbroek et al, 2012; Spain et al, 2012; contributing to the quality score included study design, randomi- Blinder et al, 2013; Brothers et al, 2013). All studies used sation, outcome measures and analytic methods (Kmet et al, 2004). predominantly quantitative methodology (Grunfeld et al, 1996, Mean quality scores were reported for each study. 2006, 2011; Oeffinger et al, 2010; Jefford et al, 2011; Blaauwbroek et al, 2012; Spain et al, 2012; Blinder et al, 2013; Brothers et al, 2013; Hershman et al, 2013). Five studies evaluated SCPs in RESULTS survivors of breast cancer (Grunfeld et al, 1996, 2006, 2011; Blinder et al, 2013; Hershman et al, 2013), three in adult survivors of Search results and description of eligible studies. The initial childhood cancers (Oeffinger et al, 2010; Blaauwbroek et al, 2012; search identified 2262 studies. Of these, seven abstracts met Spain et al, 2012) and one each in survivors of gynaecological eligibility criteria and all of these remained eligible following review cancer (Brothers et al, 2013) and colorectal cancer (Jefford et al, of full-text articles (Oeffinger et al, 2010; Grunfeld et al, 2011; 2011). There were five randomised controlled trials (RCTs) Blaauwbroek et al, 2012; Spain et al, 2012; Blinder et al, 2013; (Grunfeld et al, 1996, 2006, 2011; Brothers et al, 2013; Brothers et al, 2013; Hershman et al, 2013). Five further studies Hershman et al, 2013), four in breast cancer (Grunfeld et al, were identified from reference lists of eligible studies and 1996, 2006, 2011; Hershman et al, 2013) and one in gynaecological referenced papers, and all of these were also eligible for inclusion cancer (Brothers et al, 2013). The remaining studies were non- in the final analysis (Grunfeld et al, 1996, 1999a, b, 2006; Jefford randomised observational studies (Oeffinger et al, 2010; Jefford et al, 2011). Three of the 12 eligible studies reported different et al, 2011; Blaauwbroek et al, 2012; Spain et al, 2012; Blinder et al, outcomes of the same randomised trial; hence, these were 2013). Four studies were conducted in the United States (Spain considered as one study for the purposes of this review et al, 2012; Blinder et al, 2013; Brothers et al, 2013; Hershman et al, (Grunfeld et al, 1996, 1999a, b). The findings of 10 studies are 2013), two in Canada (Grunfeld et al, 2006, 2011), one across the 1900 www.bjcancer.com | DOI:10.1038/bjc.2014.505 Survivorship care plans in cancer BRITISH JOURNAL OF CANCER Table 1. Studies reporting outcomes following implementation of SCPs in cancer (grouped by study design and ordered by year of publication) Age Author, (years, Quality year Tumour mean or Development/ score, (country) type Population N median) Description of trial Description of SCP introduction of SCP mean Randomised controlled trials (SCP or no SCP) Hershman BC o6 Weeks post 126 54 Randomised (standard Paper: Developed and 0.98 (0.96, et al, 2013 treatment follow-up or standard plus 1. Treatment summary introduced by nurse 1.00) (USA) SCP) 2. Follow-up care plan practitioner and Questionnaires (0, 3, 6 3. Late-effects information nutritionist in specialised months) 1-h consultation SCP template not described Brothers et al, Gynaecologic o1 Year post 121 60 Randomised to standard Paper SCP: Developed by research 0.88 (0.81, 2013 (USA) cancer treatment follow-up consultation by 1. Treatment summary assistant 0.96) oncologist or standard 2. Follow-up care plan Introduced by oncologist consultation plus SCP. 3. Information about (routine consultation) Questionnaire after SCP survivorship/follow-up consultation LiveStrong SCP template Grunfeld BC X3 Months post 408 62 All discharged to PCP Paper: SCP plus nurse- Developed by oncology 0.94 (0.88, et al, 2011 treatment Randomised (standard delivered educational nurse/team 1.00) (Canada) oncologist discharge session: Introduced by nurse in consultation or standard 1. Personal treatment with survivor plus SCP with nurse summary education) 2. Copy of national follow- Own SCP template up guidelines (patient developed edition) Questionnaire (12 months) 3. Summary table for follow-up 4. Supportive care resource kit Grunfeld BC 9–15 Months 968 61 Randomised (standard Paper SCP: Developed by oncology 1.00 (1.00, et al, 2006 post diagnosis follow up at hospital (no 1. Treatment summary team 1.00) (Canada) SCP) or PCP (with SCP) 2. Recommendations for Mailed to primary-care Own SCP template follow-up care physician Questionnaire 3. Indications for investigation/indications for referral back to cancer centre Grunfeld BC Survivors 296 59/62 Randomised (standard Paper SCP: Developed by oncology 1.00 (1.00, et al, 1996 (2 hospitals) follow-up hospital (no SCP) 1. Treatment summary team 1.00) (UK) or PCP (with SCP) 2. Individual follow-up Mailed to primary-care Own SCP template recommendations physician Questionnaire 3. Handbook on follow-up care Non-randomised prospective studies (whole cohort received SCP) Blinder et al, BC Newly diagnosed 174 58 Evaluation of ‘treatment Paper SCP: Developed by oncologist 0.78 (0.62, 2013 (USA) All oncologists plan and summary 1. Treatment plan (before Introduced by oncologist 0.94) ASCO BCR Pilot document’ chemo) in standard treatment or Program Introduction of survivorship 2. Summary document follow-up consultation Multicentre documents at start of (treatment summary/ chemo (if having chemo) or survivorship end of treatment recommendations) ASCO TPS template (given separately or Telephone survey after together depending on documents received treatment) Spain et al, Paediatric Adult long-term 111 30 SCP introduced at routine Paper SCP: Developed by medical 0.82 (0.69, 2012 (USA) cancer (adult follow-up clinic consultation 1. Treatment summary team 0.95) survivors) Own template (MSKCC) 2. Follow-up care plan Introduced by oncologist Telephone survey (1–6 in standard consultation weeks after SCP) Blaauwbroek Paediatric Survivors off- 73 38 Evaluation on-line SCP for Written web-based plan Developed by specialist 0.72 (0.67, et al, 2012 cancer (adult treatment X5 Survivors; survivors and PCPs (on-line and printed book); oncologist 0.77) (Netherlands) survivors) years, not in a 72 family Survivors made accessible on line to Self-administered website follow-up doctors appointment with PCP to survivor and PCP) viewed by survivor programme have care plan Components: Directed to survivorship implemented 1. Treatment summary consultation with PCP for www.bjcancer.com | DOI:10.1038/bjc.2014.505 1901 BRITISH JOURNAL OF CANCER Survivorship care plans in cancer Table 1. ( Continued ) Age Author, (years, Quality year Tumour mean or Development/ score, (country) type Population N median) Description of trial Description of SCP introduction of SCP mean Own template/website 2. Follow-up care plan/late implementation of developed effects monitoring plan follow-up plan Questionnaire for survivor and PCP Jefford et al, CRC o12 Months 10 55 SCP/survivorship package Paper: SCP (part of Developed by oncology 0.61 (0.58, 2011 after treatment introduced by nurse in survivorship package) nurse/medical team 0.64) (Australia) educational consultation Survivorship package Introduced by nurse at a IOM template components specialised end-of- Questionnaires and 1. Survivorship information treatment consultation interview (DVD, information booklet, question prompt list) 2. SCP, individualised treatment summary and follow-up care plan including supportive care information 3. Nurse-led end-of- treatment consultation 4. 3 Follow-up telephone calls Oeffinger Paediatric X5-Year 72 37 Evaluation of mailed SCP; Paper format mailed SCP: Not reported 0.76 (0.77, et al, 2010 Hodgkin survivors aim encourage late effects 1. Treatment summary 0.75) (USA/ lymphoma Elevated risk BC/ screening 2. Summary late effects Canada) (adult cardiomyopathy (echocardiography/ 3. Screening survivors) (multi-institu- mammography) via PCP recommendations tional database) Own SCP template Plus survivorship website Questionnaire (baseline) interview (6 months) Abbreviations: ASCO ¼ American Society of Clinical Oncology; BC ¼ breast cancer; BCR ¼ Breast Cancer Registry; CRC ¼ colorectal cancer; IOM ¼ Institute of Medicine; MSKCC ¼ Memorial Sloan-Kettering Cancer Center; PCP ¼ primary care physician; SCP ¼ survivorship care plan; TPS ¼ treatment plan and summary document. Quality score assessing the scientific quality of study (Kmet et al, 2004); maximum score ¼ 1.0. United States and Canada (Oeffinger et al, 2010), one in the United 2013; Brothers et al, 2013; Hershman et al, 2013). Copies were Kingdom (Grunfeld et al, 1996), one in the Netherlands frequently sent to the primary-care physician, oncologist or other (Blaauwbroek et al, 2012) and one in Australia (Jefford et al, health professionals involved in care, and survivors were 2011). Heterogeneity was noted in the point in the survivorship encouraged to share their SCP with family and practitioners who trajectory that recruitment occurred. Although one study recruited may not have been sent a copy. survivors at diagnosis or during chemotherapy (Blinder et al, In two studies, the SCP was developed specifically as a resource for 2013), there were others that included survivors of breast cancer, primary-care physicians to facilitate discharge from cancer centre- who had completed treatment several years before entering the based follow-up to general practice (Grunfeld et al, 1996, 2006). study (Grunfeld et al, 1996, 2006, 2011). Although these ‘discharge plans’ may not traditionally be considered The quality scores for the studies reflected the suboptimal to be SCPs, they met the definition of multifaceted plans for long- methodology of many studies (overall mean score ¼ 0.85, mean term care; hence, they were included in the review. These two studies for RCTs ¼ 0.96, mean for non-RCTs ¼ 0.74, Table 1). Maximum were conducted before the term ‘survivorship care plan’ was in possible score was 1.0. common use and they are considered to be landmark studies of novel models of follow-up care after cancer treatment (Grunfeld et al, 1996, SCPs – models evaluated 2006). It should be noted, however, that the effect of the SCPs in these studies is confounded by the fact that survivors with an SCP SCP format and content. Of the 10 studies, 9 evaluated paper- were followed up in primary care and those without an SCP were based SCPs (Grunfeld et al, 1996, 2006, 2011; Oeffinger et al, 2010; followed up in a cancer centre, as the trials were designed to evaluate Jefford et al, 2011; Spain et al, 2012; Blinder et al, 2013; Brothers the practitioner delivering the care rather than the care plan itself et al, 2013; Hershman et al, 2013) and one evaluated a web-based (Grunfeld et al, 1996, 2006). document (Blaauwbroek et al, 2012) (Table 1). Most SCPs for survivors of adult cancers were developed at the All studies evaluated SCPs that consisted of at least two end of treatment. The exception was a study that combined a components: a treatment summary and a plan for long-term treatment plan developed at the beginning of chemotherapy with follow-up care. Nine of the 10 SCPs were accompanied by other an SCP developed separately at the end of treatment (Blinder et al, survivorship resources such as booklets, DVDs or websites that 2013). In the studies of survivors of childhood cancers, one focused contained information about late effects of treatment, supportive on survivors over the age of 18 years, who were already attending a care, lifestyle/general health information or copies of follow-up follow-up clinic (Spain et al, 2012). The other two included only care guidelines (Grunfeld et al, 1996, 2006, 2011; Oeffinger et al, adult survivors who were treated more than 5 years ago and who 2010; Jefford et al, 2011; Blaauwbroek et al, 2012; Blinder et al, were not necessarily attending for follow-up care (Oeffinger et al, 2013; Brothers et al, 2013; Hershman et al, 2013). 2010; Blaauwbroek et al, 2012). Most of the SCPs were developed primarily as a resource for cancer survivors (Oeffinger et al, 2010; Grunfeld et al, 2011; Jefford SCP development and introduction. Several different models of et al, 2011; Blaauwbroek et al, 2012; Spain et al, 2012; Blinder et al, SCP delivery were evaluated. All SCPs were developed by the 1902 www.bjcancer.com | DOI:10.1038/bjc.2014.505 Survivorship care plans in cancer BRITISH JOURNAL OF CANCER treatment team. Some were delivered to the patient by an Results for individual outcomes are reported below, across all oncologist during a normal follow-up visit (Spain et al, 2012; studies. Blinder et al, 2013; Brothers et al, 2013) and others were delivered during a specialised educational consultation with a specialist nurse Health-related quality of life. The effect of SCPs on health-related (Grunfeld et al, 2011; Jefford et al, 2011; Hershman et al, 2013). quality of life (HRQOL) has been assessed in five studies (Grunfeld Three were sent by mail, either to the patient (Oeffinger et al, 2010) et al, 1996, 2006, 2011; Jefford et al, 2011; Hershman et al, 2013). or primary-care physician (Grunfeld et al, 1996, 2006), and one Four of these were the RCTs in breast cancer survivors, described was a web-based SCP with log-in details sent to patient and in the previous section (Grunfeld et al, 1996, 2006, 2011; primary-care physician (Blaauwbroek et al, 2012). Hershman et al, 2013). No difference was found when measuring All SCPs were developed using standardised templates. One HRQOL using SF-36 (Grunfeld et al, 1996, 2006, 2011) and FACT- study used the American Society of Clinical Oncology SCP B (Hershman et al, 2013). The other study measuring HRQOL template (American Society of Clinical Oncology & Cancer.Net, in detail was a small (n ¼ 10) non-randomised pilot study of 2013; Blinder et al, 2013), one the LiveStrong SCP template colorectal cancer survivors receiving an SCP as part of a (Brothers et al, 2013 and Livestrong Foundation Livestrong Care survivorship package (Jefford et al, 2011). In this study there was Plan (http://www.livestrongcareplan.org/)), one adapted the Insti- similar HRQOL before and after implementation, measured by the tute of Medicine template (Hewitt et al, 2006; Jefford et al, 2011) EORTC QLQ-C30 and QLQ-CR29 (Jefford et al, 2011). However, and the remaining studies developed their own template for use in there were fewer unmet needs after implementation of the package the study and/or for routine institutional use (Grunfeld et al, 1996, using the Cancer Survivors Unmet Needs scale (Jefford et al, 2011). 2006, 2011; Oeffinger et al, 2010; Blaauwbroek et al, 2012; Spain The investigators are currently conducting a randomised trial in et al, 2012; Hershman et al, 2013). this Australian population. Outcomes Distress/cancer-related distress. The RCTs that included the evaluation of distress in breast cancer survivors found no difference Randomised controlled trials. There have been five RCTs of SCPs (Grunfeld et al, 1996, 2006, 2011; Brothers et al, 2013; between the SCP and no-SCP groups (Grunfeld et al, 1996, 2006, 2011; Hershman et al, 2013)measured by the Hospital Anxiety and Hershman et al, 2013) (Table 2). The two earliest studies evaluating breast cancer follow-up care in primary care with a Depression Scale (Grunfeld et al, 1996, 2006) and the Impact of Events Scale (Grunfeld et al, 2011). In one of these RCTs, there was a standardised follow-up protocol (considered as an SCP) showed no difference in the primary outcomes of cancer recurrence and significantly lower level of health worry (measured by the Assessment of Survivor Concerns questionnaire) in the SCP group anxiety/depression, and they concluded that follow-up in primary care with the SCP (rather than in a hospital clinic) is safe at 3 months but this was not seen at the 6-month measurement (Hershman et al, 2013). There was also no difference in Profile of (Grunfeld et al, 1996, 2006). One of these studies (Grunfeld et al, Mood States score before and after receiving an SCP by mail in a 1996) evaluated satisfaction and economic outcomes (published group of adult survivors of childhood cancer considered to be at separately) (Grunfeld et al, 1999a, b) and found that patient substantially elevated risk of breast cancer or cardiomyopathy due to satisfaction with health care was higher in the primary care/SCP previous cancer treatment (Oeffinger et al, 2010). group, and that although more diagnostic tests were ordered in A study in a cohort receiving SCPs found that distress may be the primary care group, the cost of tests overall was no different lower in survivors with an SCP; 72% of breast cancer patients and the cost of follow-up to the patient (in the United Kingdom) surveyed after receiving an SCP said it gave them greater peace of was less in the primary care/SCP group compared with the mind (measured by a Likert scale developed for the study) (Blinder hospital group (Grunfeld et al, 1999a, b). et al, 2013). A later study by the same investigators evaluated a more formal, However, other studies found that distress may be higher in individualised SCP, randomising breast cancer survivors receiving survivors with an SCP (Jefford et al, 2011; Blaauwbroek et al, 2012; follow-up in primary care to receive an SCP or standard (primary) Spain et al, 2012). In one study, the proportion of colorectal cancer care without the SCP. They found that there was no difference in patients experiencing distress increased from 30% at baseline as the primary outcomes of various aspects of health-related quality measured by the Brief Symptom Inventory (BSI-18) to 37% at the of life but there was a statistically significant difference in the second assessment point (Jefford et al, 2011). This study also number of women who correctly identified their primary-care showed a slight increase in distress at follow-up, measured by the physician as the clinician responsible for their follow-up care, with Distress Thermometer (Jefford et al, 2011). In another study where more women doing so in the SCP group (Grunfeld et al, 2011). all participants had an SCP, 17% reported worrying ‘frequently’ or A further RCT, also in breast cancer survivors, also found no ‘almost constantly’ about their health (assessed by one item in the overall difference in the primary outcomes (Hershman et al, 2013). Memorial Symptom Assessment Scale) (Spain et al, 2012). Thirty- There was a transient decrease in cancer-related anxiety in women one per cent of childhood cancer survivors surveyed 2 weeks after in the intervention group but this was not sustained. The study also receiving an SCP at a routine follow-up visit said that reading the looked for differences between Hispanic and non-Hispanic treatment summary and care plan or at least one of its individual survivors, and there was no significant difference between racial sections had caused them distress (Spain et al, 2012), and in a study groups (Hershman et al, 2013). of childhood cancer survivors 20% of those given an on-line SCP The remaining RCT was conducted in gynaecological cancer said it triggered negative memories (Blaauwbroek et al, 2012) and survivors (Brothers et al, 2013). It evaluated response to the SCP 20% of the related primary care physicians surveyed were and perception of care in the consultation wherein the SCP was concerned that the SCP may trigger negative memories in their delivered. It was found that survivors overall were very satisfied patients (Blaauwbroek et al, 2012). These studies had a much lower with the care and consultation, and that there was no difference quality score than the RCTs that showed no increase in distress between the two groups in any of the outcomes measured (Table 1). (Brothers et al, 2013). The remaining five (non-RCT) studies were prospective studies in which the whole cohort received an SCP (Oeffinger et al, 2010; Survivor satisfaction with care plan. All studies evaluating the Jefford et al, 2011; Blaauwbroek et al, 2012; Spain et al, 2012; overall satisfaction of survivors with their SCP showed very high levels Blinder et al, 2013). of satisfaction. Colorectal cancer survivors expressed high levels of www.bjcancer.com | DOI:10.1038/bjc.2014.505 1903 BRITISH JOURNAL OF CANCER Survivorship care plans in cancer Table 2. Outcomes following implementation of SCPs in cancer (grouped by study design and ordered by year of publication) Author Description of (year) trial and SCP Outcomes Measures Results Conclusions Randomised controlled trials (SCP or no SCP) Hershman BC; standard follow- 1.Treatment satisfaction FACIT-TS-PS No difference No short-term benefit of SCP et al, 2013 up or standard plus (6 months) SCP; n ¼ 126 2.Impact of cancer IOC No difference Decrease in cancer-related worry (did not persist) 3.Health and cancer worry ASC Less worry in intervention group at 3 months; did not persist at 6-month evaluation 4.HRQOL FACT-B No difference 5.Depression CES-D No difference 6.Cancer symptoms Memorial Symptoms No difference Assessment Scale 7.Ethnicity (Hispanic/non- All measures No significant persistent Hispanic) difference Brothers Gynaecologic cancer; 1.Satisfaction (administrative Administrative services No difference No effect of SCP on rating of et al, 2013 standard consultation services) scale health services or standard plus 2.Satisfaction (clinical services) Clinical services scale No difference LiveStrong SCP; 3.Satisfaction (educational Educational services scale No difference n ¼ 121 services) 4. Satisfaction (helpfulness of Helpfulness of Written No difference written materials) Materials scale Grunfeld BC; usual follow-up 1. Cancer-related distress Impact of events scale No difference SCPs do not improve PROs. et al, 2011 (PCP) or usual plus 2.General distress POMS No difference Patients with SCPs are SCP; n ¼ 408 3.HRQOL SF 36, PCS and MCS No difference significantly more aware of 4.Patient satisfaction MOS-PSQ No difference doctor responsible for 5.Continuity/coordination of care CCCQ No difference follow-up care 6.Health service (a) Identify clinician responsible New measure developed SCP group better identified for care PCP as person responsible for follow-up (P=0.005) (b) Number of visits to Number of visits No difference oncologist Grunfeld BC; usual follow-up 1.Recurrence Recurrence rate No difference Serious events rare; equal et al, 2006 (hospital clinic, no frequency in both groups SCP or PCP with 2.Serious clinical event Event rate No difference BC patients can safely be SCP); n ¼ 968 followed-up by PCP 3.Death Death rate No difference 4.HRQOL SF-36 No difference 5.Distress HADS No difference Grunfeld BC; randomised to 1.Recurrence Recurrence rate No difference PCP follow-up no increase in et al, 1996 usual follow-up at time to diagnosis. hospital clinic (no 2.Time to diagnosis recurrence Time to recurrence No difference No difference in anxiety, or SCP) or follow-up with deterioration in HRQOL PCP (with SCP); 3.HRQOL EORTC symptom scale No difference PCP less costly to patient; no n ¼ 296 difference in cost of tests SF-36 No difference PCP follow-up higher satisfaction 4.Distress HADS No difference 5.Economic evaluation Cost calculation PCP follow-up visits less costly than hospital follow-up; cost of diagnostic tests no diff 6.Satisfaction with care UK College of Health PCP follow-up higher level of patient satisfaction than hospital follow-up Non-randomised prospective studies (whole cohort received SCP) Blinder BC; ASCO template 1. Perception about Likert scale 94% Said helps Survivors react favourably et al, 2013 treatment plan and communication with and communication between when treatment plans are summary document between physicians patient and doctor; 82% personalised and given at consultation; between health professionals implemented as part of their n ¼ 174 oncologic care. 2. Perception about peace of Likert scale 72% Greater peace of mind mind 3. Perception about using Likert scale 56% Likely to use again documents in future 4. Perceptions about support Likert scale 70% Right amount of support from health professionals; 69% right amount of information about cancer and treatment 5. Perceptions about Likert scale 96% Understood planned preparedness for treatment treatment; 96% felt prepared for what to expect from their treatment 1904 www.bjcancer.com | DOI:10.1038/bjc.2014.505 Survivorship care plans in cancer BRITISH JOURNAL OF CANCER Table 2. ( Continued ) Author Description of (year) trial and SCP Outcomes Measures Results Conclusions Spain et al, Paediatric cancer 1. Retention of documents Single item 95% Retention Survivors retain, understand, 2012 (adult survivors); and value the treatment SCP introduced in summary and care plan in a consultation; n ¼ 111 real-world clinic setting 2. Understanding of SCP Single item 95% Reported understanding Receipt of SCP did not cause worry or concern in majority 3. Value of SCP Likert scale 93% Moderately or extremely valuable 4. Dissemination of document Single item 44% Shared with others in personal circle 5. Concern raised by receiving Single item 14% Caused concern; 86% not SCP 6. Worry about health Memorial Symptom 17% Frequent or almost Assessment Scale constant worry about health 7. Preferences for format of SCP Preferences for paper 95% interest in an online or form vs wallet card, wallet-card version of the online, e-mail treatment summary and care plan Blaauw- Paediatric cancer 1. User friendliness (website) Survey 95% Survivors/97% PCPs said The availability of a web- broek et al, (adult survivors); user friendly based personalised SCP 2012 web-based SCP for facilitates follow-up care in survivor and PCP; shared-care model (late n ¼ 73 effect outpatient clinic and PCP) 2. Satisfaction (SCP information) Survey 89% Survivors/100% PCP said SCP appreciated by info is sufficient survivors 3. Negative memories triggered? Survey 20% Survivors negative memories 4. Confidence in PCP Survey 82% Survivors/93% PCPs confident Jefford CRC; nurse-delivered 1. Unmet needs CASUN scale 7 Unmet needs at baseline, Feasibility confirmed et al, 2011 survivorship package 4 at follow-up with SCP; n ¼ 10 2. Distress BSI-18 30% Distress (baseline); Acceptability confirmed 37% (follow-up) 3. HRQOL EORTC QOL Mean 71 (baseline), 69 Participants valued all questionnaire QLQ-C30/ (follow-up) intervention components QLQ-CR29 4. Satisfaction Survey developed for High level of survivor Resource intensive for health study satisfaction professionals 5. Feasibility Survey developed for Feasible but resource intensive study Oeffinger Paediatric Hodgkin 1. Use of SCP Survey 78% Remembered receiving Feasibility demonstrated et al, 2010 lymphoma SCP; half had shared plan (adult survivors); with PCP paper-based SCP 2. Screening Practices Survey 41% Women had Increase screening rates; mailed to random mammogram within SCP favorably received. sample from multi- 6 months; 20% had institutional database; recommended n ¼ 72 echocardiogram; additional 1/3 planned to have recommended testing in the next 6 months 3. PCP interest in study Survey Only 19% of PCPs approached Website did not add value to by survivors agreed to mailed materials participate in survey Abbreviations: ASC ¼ Assessment of Survivor Concerns; BC ¼ breast cancer; BSI ¼ Brief Symptom Inventory; CASUN ¼ Cancer Survivors Unmet Needs; CES-D ¼ Center for Epidemiologic Studies Depression Scale; CCCQ¼ Continuity/coordination of care; CRC¼ colorectal cancer; EORTC¼ European Organisation for Research and Treatment of Cancer; FACT-B¼ functional assessment of cancer therapy-breast; FACIT-TS-PS ¼ functional assessment of chronic illness therapy-treatment satisfaction patient-satisfaction; HADS ¼ Hospital Anxiety and Depression Scale; HRQOL ¼ health-related quality of life; IOC ¼ Impact of Cancer Scale; MOS-PSQ ¼ Medical Outcomes Study-Patient Satisfaction Questionnaire ; PCP ¼ primary care physician; POMS ¼ profile of mood states; PRO ¼ patient reported outcome; SCP ¼ survivorship care plan. satisfaction in interviews after receiving an SCP in a nurse-led cxonsultation (including in the intervention arm, the LiveStrong consultation; it was used as part of a survivorship package (including SCP) and there was no difference between the groups in rating of DVD and face-to-face educational session and follow-up phone calls) helpfulness (Brothers et al, 2013). and participants valued all components of the intervention (Jefford In the two studies that asked survivors to rate the amount of et al, 2011). Positive feelings about the SCP were reported in a group information contained in the SCP (Blaauwbroek et al, 2012; Spain of adult survivors of childhood cancer considered to be at substantially et al, 2012), over 80% of survivors thought the amount elevated risk of breast cancer or cardiomyopathy due to previous of information was right (Blaauwbroek et al, 2012; Spain et al, cancer treatment (Oeffinger et al, 2010). 2012); in one of the studies, the primary-care physicians were In one of the RCTs, gynaecological cancer survivors were asked also asked and 100% were satisfied with the SCP (Blaauwbroek about the helpfulness of written materials that were given at et al, 2012). www.bjcancer.com | DOI:10.1038/bjc.2014.505 1905 BRITISH JOURNAL OF CANCER Survivorship care plans in cancer Understanding of information in the SCP. Survivor understanding no SCP (measured by Continuity/coordination of care ques- of SCP content was assessed in two studies (Spain et al, 2012; Blinder tionnaire (Grunfeld et al, 2011). et al, 2013). In all of these, survivors were asked whether they  Survivor perception of communication role of SCP: 94% of understood the document, and all reported a high level of perceived breast cancer survivors surveyed after receiving an SCP thought understanding. This included self-reported understanding of SCP it would be useful for communication between patient and content in 98% (Blinder et al, 2013) of breast cancer survivors and in doctor; 82% thought it would improve communication between 95% of childhood cancer survivors (Spain et al, 2012). health professionals (measured by a Likert scale developed for the study) (Blinder et al, 2013). Patient satisfaction with medical care. In two RCTs in breast Sharing of SCP: In studies of adult survivors of childhood cancer, cancer survivors, higher levels of satisfaction with many aspects of 44% (Spain et al, 2012) and 50% (Oeffinger et al, 2010) said they the overall care and the consultation were seen in women having had shared their SCP with other people in their personal circle, follow-up in primary care with an SCP compared with those and breast cancer survivors reported using the SCP to facilitate having follow-up care without an SCP at a hospital clinic (Grunfeld discussions with family members (Blinder et al, 2013). et al, 1996, 2006). The follow-on study to this showed no difference in these outcomes in the SCP compared with the no-SCP group None of the studies included in the review reports long-term when all were followed-up in primary care (Grunfeld et al, 2011). outcomes following the implementation of an SCP. This includes The other RCTs (in gynaecological cancer and breast cancer an absence of data regarding quality of life/psychosocial outcomes, survivors) also showed no difference in perception of care adherence to recommended screening regimens and long-term evaluated following a single consultation where the SCP or recurrence and survival data. standard care was delivered (Brothers et al, 2013) or in satisfaction with care over a 6-month period (Hershman et al, 2013). Another study evaluating satisfaction with care found that 70% of breast DISCUSSION cancer survivors (all receiving a SCP) surveyed after receiving the plan felt they got the right amount of general support from health This systematic review identified 10 studies (5 of them were RCTs) professionals; 69% felt they received the right amount of that met inclusion criteria. Study populations included survivors of information about cancer and treatment (Blinder et al, 2013). breast, gynaecological, colorectal and childhood cancer, and several different models of SCP were evaluated. Although levels of survivor Uptake of recommended screening. One study was designed satisfaction with SCPs were very high, no significant effect was primarily to assess whether an SCP received by mail would increase found on survivor distress, satisfaction with care, cancer-care uptake of recommended screening for late effects in a group of coordination or oncological outcomes in the RCTs. One study adult survivors of childhood cancer considered to be at suggested a positive impact on reducing unmet needs (Jefford et al, substantially elevated risk of breast cancer or cardiomyopathy 2011). Potential harm (increase in distress) was suggested in some due to previous cancer treatment (Oeffinger et al, 2010). In this non-randomised studies. Resource issues were identified as a study (where all participants received an SCP), 41% of women had significant barrier to implementation. a mammogram within 6 months of receiving the care plan; 20% of Two questions arose from the IOM report (Hewitt et al, 2006): survivors had a recommended echocardiogram; and an additional (1) will treatment summaries and SCPs improve care for cancer one-third of the group planned to have testing in the next 6 survivors and (2) what is the ideal model for implementation of months (Oeffinger et al, 2010). It is not clear whether this was an SCPs and their incorporation into routine practice? improvement on the screening rate in a similar population without In 2006 when the IOM recommended the development of a an SCP. No long-term data were provided in any studies; thus, it is treatment summary and SCP for every cancer survivor (Hewitt unknown whether this will translate to improved survival. et al, 2006), only two of the studies identified in this review (evaluating outcomes of models of survivorship care similar to that Feasibility. Feasibility and provider time factors were reported in proposed by the report) had been published (Grunfeld et al, 1996, five studies (Grunfeld et al, 1999b; Jefford et al, 2011; Spain et al, 2006). Since then, there have been many studies showing that 2012; Brothers et al, 2013; Hershman et al, 2013). survivors are very enthusiastic about the concept of an SCP In a pilot study of colorectal cancer survivors, SCP use was (Hewitt et al, 2007; Kantsiper et al, 2009; Brennan et al, 2011; considered feasible but resource intensive; it was estimated that Marbach and Griffle, 2011; Smith et al, 2011); this is accompanied 1–1.5 h was required for an oncology nurse to complete SCPs and, by cautious interest from many oncology health professionals in addition, staff with clinical experience had to verify the accuracy (Hewitt et al, 2007; Brennan et al, 2010) and some concerns from of the SCP (Jefford et al, 2011). In another study, an SCP developed other professionals (Hewitt et al, 2007; Kantsiper et al, 2009). for adult survivors of childhood cancer was estimated to take the Many models and methods of delivery have been proposed, and medical team 1–4 h to develop (Spain et al, 2012). In the RCT in survivor and health provider preferences have been assessed (de gynaecological cancer survivors, it took a research assistant an Bock et al, 2004; Cox et al, 2006; Ganz and Hahn, 2008; Greenfield average of 1.5 h (range 1–2) to prepare the SCP (Brothers et al, et al, 2009; Marbach and Griffle, 2011). 2013). A further study commented that development of the SCP Research has progressed from exploring preferences to focusing had a significant cost related to use of health resources but did not on evaluating different models of survivorship care planning. quantify this (Hershman et al, 2013). Despite this burgeoning interest, only 10 studies were identified Other outcomes for inclusion in the current review (Grunfeld et al, 1996, 2006, 2011; Oeffinger et al, 2010; Jefford et al, 2011; Blaauwbroek et al, Oncological outcomes: There was no difference in recurrence 2012; Spain et al, 2012; Blinder et al, 2013; Brothers et al, 2013; (Grunfeld et al, 1996, 2006) or serious clinical events (Grunfeld Hershman et al, 2013). None of the five randomised studies et al, 2006) in two RCTs of breast cancer survivors having identified found a significant or sustained benefit to quality of life, follow-up with SCP implemented by primary-care physician vs distress, quality of care/care coordination or oncological outcomes survivors having follow-up in a hospital clinic without SCP from the SCP. It is unclear from detailed evaluation of these studies (Grunfeld et al, 1996, 2006). whether the failure to detect benefits is due to these SCPs actually Survivor perception of care coordination: There was no not being beneficial, or whether it is related to other factors. Some difference in an RCT of primary care follow-up with SCP or of these studies may fail to identify the most appropriate outcomes 1906 www.bjcancer.com | DOI:10.1038/bjc.2014.505 Survivorship care plans in cancer BRITISH JOURNAL OF CANCER to evaluate, use of insensitive outcome measures, or fail to include At present, there exists a lack of long-term outcome data about or identify a subgroup of cancer survivors who may benefit from the impact of SCPs. It is unknown whether there may be significant SCPs more than others. Using the example of breast cancer, it is benefits later in the survivorship phase of care and it is unknown possible that one outcome of an SCP may be better compliance whether SCPs will change long-term oncological outcomes with adjuvant endocrine therapy but this has not been measured. It (recurrence and survival). None of the studies used has an impact is also possible, for example, that breast cancer survivors, a group on recurrence and/or survival as an aim or an outcome, as SCPs that is overrepresented in the RCTs of SCPs, and a group that is have been developed primarily as a tool to improve psychosocial already relatively well informed and well supported, may not be the and care coordination (rather than oncological) outcomes. survivors most likely to benefit from SCPs. This study has several limitations. There is a small body of Many of the studies in the review asked survivors for feedback extremely heterogeneous literature on which to base conclusions on the SCP they were given (Oeffinger et al, 2010; Jefford et al, and few randomised trials. This has been noted in previous 2011; Blaauwbroek et al, 2012; Spain et al, 2012; Brothers et al, discussions about interpretation of the evidence (Parry et al, 2013). 2013). The feedback was extremely positive, consistent with the The populations represented in the studies have survivors of previous background survivorship research showing great enthu- different tumour types at different stages of survivorship repre- siasm for SCPs from cancer survivors. In the studies in this review, sented. A number of different models of care have been presented, survivors reported having a good understanding of the content of including different SCP templates, formats and methods of delivery. the SCP (Spain et al, 2012; Blinder et al, 2013), valuing and sharing Different outcomes have been evaluated using different measure- the information with clinicians and family members. These studies ment tools and it is unclear which tools are most appropriate. The suggest that despite having no measureable benefit in RCTs, SCPs ‘ceiling effect’ is an additional challenge; for example, in these appear to be highly valued by survivors. However, as patients and studies, survivors reported high levels of satisfaction with care survivors are often very positive about elements of their care, these before an SCP was introduced, making it difficult to detect an data are not sufficient to warrant routine use of SCPs. improvement if it existed (Grunfeld et al, 1996, 2011; Hershman Several studies have raised the possibility that there may be some et al, 2013). However, given the diverse needs of cancer survivors harm from SCPs; they may increase distress in some survivors and the large spectrum of health environments in which survivors (Jefford et al, 2011; Blaauwbroek et al, 2012; Spain et al, 2012). This are treated, this heterogeneity also reflects the necessity for must be considered when SCPs are being developed and implemen- survivorship care planning to be adapted to local needs and ted. It is likely that there are some survivors (possibly ‘information- resources. Reviewing these varied models will aid this process. This seeking’ survivors) more suited to SCP use than others. It also would be enhanced by consistency in the approach to planning highlights the need for flexibility and survivor input in determining trials (distinguishing the physical SCP document from the context the appropriateness and the content of an SCP. of its delivery/implementation), consistency in measurement tools A 2011 study evaluating the uptake and quality of treatment and consistency in the description of results (Parry et al, 2013). summaries and SCPs in 13 LiveStrong Centers of Excellence in Cancer Survivorship Network showed relatively poor adherence to CONCLUSION IOM recommendations even in dedicated cancer institutes and their affiliated community-based treatment centres (Stricker et al, This study has identified and evaluated 10 studies reporting 2011). Less than half of IOM content recommendations for outcomes after implementation of SCPs for cancer survivors. The treatment summaries were met (mean 46%) and less than two- emerging evidence has shown few measureable benefits to support thirds of the recommendations for SCPs were met (mean 59%). the use of SCPs (i.e., making survivors more aware of who the This suggests that there are significant barriers to the implementa- clinician responsible for their care is, and possibly reducing unmet tion of SCPs even when there is extremely strong commitment to needs of some survivors). High levels of survivor satisfaction with the concept (Stricker et al, 2011). Barriers to quality survivorship SCPs was reported and self-reported levels of understanding were care were hypothesised to include reimbursement issues, limited very high. Suggestion of potential harm was found, with some (non- institutional resources including personnel, time and information/ randomised) studies reporting an increase in cancer-related distress. communications systems (Stricker et al, 2011). Significant barriers to the implementation of SCPs were identified, The current review has also highlighted resource issues including the intense resources required. Further studies of (particularly time) (Grunfeld et al, 1999b; Jefford et al, 2011; innovative SCP models, evaluating a range of outcomes in various Spain et al, 2012; Brothers et al, 2013). It was estimated in these survivor populations and using different outcome measures are studies that the development of an SCP takes at least 1 h (and up to required. The long-term effect of SCPs on psychosocial, oncological 4 h) regardless of whether it is developed by a doctor, a nurse or a and resource outcomes should be evaluated. It is unlikely that one research assistant (Grunfeld et al, 1999b; Jefford et al, 2011; Spain model will suit all survivors, cancer centres or tumour types (e.g., et al, 2012; Brothers et al, 2013). Current health-care funding younger patients may prefer electronic care plans, and the content models do not allow for remuneration for this considerable time. may need to focus more on managing endocrine symptoms when The studies in this review suggest that outcomes following delivery treatment-induced premature menopause occurs). Research addres- of the SCP by nurses (Grunfeld et al, 2011; Jefford et al, 2011; sing these variables in a consistent manner is needed. Hershman et al, 2013) and primary-care physicians (Grunfeld et al, 1996, 2006, 2011; Blaauwbroek et al, 2012) (rather than specialist oncologists), and by mail (Grunfeld et al, 1996, 2006; Oeffinger ACKNOWLEDGEMENTS et al, 2010) or on-line(Blaauwbroek et al, 2012) (rather than in a face-to-face consultation) are similar. 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Survivorship care plans in cancer: a systematic review of care plan outcomes

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Springer Journals
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Copyright © 2014 by The Author(s)
Subject
Biomedicine; Biomedicine, general; Cancer Research; Epidemiology; Molecular Medicine; Oncology; Drug Resistance
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0007-0920
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1532-1827
DOI
10.1038/bjc.2014.505
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Abstract

FULL PAPER British Journal of Cancer (2014) 111, 1899–1908 | doi: 10.1038/bjc.2014.505 Keywords: survivorship care plan; cancer survivorship; follow-up care; psychosocial care; quality of life Survivorship care plans in cancer: a systematic review of care plan outcomes ,1,2,3 3 4 2,3 1,2,3,5 M E Brennan , J F Gormally , P Butow , F M Boyle and A J Spillane 1 2 Breast and Surgical Oncology at The Poche Centre, North Sydney, NSW, Australia; Northern Clinical School, Sydney Medical 3 4 School, The University of Sydney, Sydney, NSW, Australia; The Mater Hospital, North Sydney, NSW, Australia; Psycho-oncology Co-operative Research Group (PoCoG), The University of Sydney, Sydney, NSW, Australia and Royal North Shore Hospital, St Leonards, NSW, Australia Background: Eight years after the Institute of Medicine recommended survivorship care plans (SCPs) for all cancer survivors, this study systematically reviewed the evidence for their use. Methods: Studies evaluating outcomes after implementation of SCPs for cancer survivors were identified by searching databases (MEDLINE, EMBASE and Cochrane). Data were extracted and summarised. Results: Ten prospective studies (2286 survivors) met inclusion criteria (5 randomised controlled trials (RCTs)). Study populations included survivors of breast, gynaecological, colorectal and childhood cancer. Several models of SCP were evaluated (paper based/on-line, oncologist/nurse/primary-care physician-delivered and different templates). No significant effect of SCPs was found on survivor distress, satisfaction with care, cancer-care coordination or oncological outcomes in RCTs. Breast cancer survivors with SCPs were better able to correctly identify the clinician responsible for their follow-up care. One study suggested a positive impact on reducing unmet needs. Levels of survivor satisfaction with, and self-reported understanding of, their SCP were very high. Feasibility was raised by health professionals as a significant barrier, as SCPs took 1–4 h of their time to develop. Conclusions: Emerging evidence shows very few measurable benefits of SCPs. Survivors reported high levels of satisfaction with SCPs. Resource issues were identified as a significant barrier to implementation. The many long-term challenges, unmet needs and gaps in care in a dedicated appointment with a trained and competent health facing cancer survivors were highlighted in the Institute of professional (Hewitt et al, 2006; Khatcheressian et al, 2006; Medicine’s 2006 landmark report From Cancer Patient to Cancer National Breast and Ovarian Cancer Centre (NBOCC), 2010; Survivor: Lost in Transition (Hewitt et al, 2006). Issues for Khatcheressian et al, 2013; American Society of Clinical Oncology survivors include late effects of cancer treatment, lifelong & Cancer.Net, 2013). There is evidence that cancer survivors and emotional effects and tumour recurrence. The report also outlined their primary-care physicians are receptive to the concept service provision issues such as poor coordination of care, lack of of SCPs and there has also been strong support for them from communication between health practitioners and patient uncer- consumer groups (Hewitt et al, 2007; Kantsiper et al, 2009; tainty about who is responsible for providing long-term care Brennan et al, 2011; Livestrong Foundation Livestrong Care Plan (Hewitt et al, 2006). The ‘survivorship care plan’ (SCP), an (http://www.livestrongcareplan.org/); Marbach and Griffle, 2011; individualised treatment summary and plan for ongoing care, was Smith et al, 2011). proposed as a solution to many of these issues. Many cancer Enthusiasm for SCPs has been tempered by the realisation that treatment guidelines around the world now suggest or recommend their implementation is resource-intensive (Jefford et al, 2011; that every cancer patient be provided with an SCP at the Spain et al, 2012; Brothers et al, 2013). In the context of looming completion of treatment, and many suggest that this be delivered shortages in the oncology professional workforce, evidence of their *Correspondence: Dr M Brennan; E-mail meagan.brennan@sydney.edu.au Received 8 May 2014; revised 28 July 2014; accepted 18 August 2014; published online 14 October 2014 & 2014 Cancer Research UK. All rights reserved 0007 – 0920/14 www.bjcancer.com | DOI:10.1038/bjc.2014.505 1899 BRITISH JOURNAL OF CANCER Survivorship care plans in cancer benefit is crucial to justify recommendations for the routine and Studies identified from search of Additional studies identified universal implementation of SCPs (Erikson et al, 2007; Medical databases from other sources (reference Oncology Group of Australia, 2009). (n =2262) lists, n =5) This study systematically reviewed the evidence evaluating outcomes following development and implementation of SCPs in cancer survivorship. Total studies identified (n =2267) MATERIALS AND METHODS Studies for this evidence review were identified by searching the literature to the end of June 2013. MEDLINE and EMBASE Eligibility criteria: databases and the Cochrane Database of Systematic Reviews were Original study evaluating a written searched using the keywords ‘cancer’ and ‘care plan’, ‘survivorship multifaceted care plan for long-term or follow-up care care plan’ and ‘follow-up care’. Reference lists of background in survivors of early-stage cancer and articles and eligible studies were searched to identify additional reporting quality of life, satisfaction with care and/or oncological outcomes. studies. Eligibility criteria were as follows: original studies evaluating a standardised written care plan (defined as a structured multifaceted plan for long-term or follow-up care) in cancer survivors (defined as patients having completed treatment for early cancer with Abstracts meeting eligibility Excluded curative intent) and reporting quality of life, satisfaction with care criteria (n =2255 n =12 or care plan and/or oncological outcomes. Follow-up care was ineligible) defined as long-term medical care after treatment for early cancer. Studies evaluating care plans that included only one aspect of care (e.g., those evaluating a targeted dietary, psychological or exercise intervention) were not eligible, as the aim was to review the Excluded Full-text studies meeting (n =2 duplicate evidence relating to multifaceted care plans. Review articles and eligibility criteria studies) n =12 those focusing on patients with metastatic cancer were not eligible for inclusion. The screening process is summarised in Figure 1 (PRISMA flowchart) (Liberati et al, 2009). Titles, abstracts and then full-text publications were assessed against the pre-determined eligibility criteria for study inclusion. Studies included in review Unclear cases were discussed and resolved with a second n =10 investigator. Data were extracted by two independent reviewers and were summarised in evidence tables. Discrepancies were resolved with review by a third reviewer. Extracted data included Figure 1. Prisma Flowchart (Liberati et al, 2009). information about patient population (cancer type and demo- graphic data), the type of care plan evaluated, outcomes evaluated therefore presented (Grunfeld et al, 1996, 2006, 2011; Oeffinger and results of the study. Each included study was assessed for study et al, 2010; Jefford et al, 2011; Blaauwbroek et al, 2012; Spain et al, quality using the ‘QualSyst’ tool, a standard checklist of 14 items 2012; Blinder et al, 2013; Brothers et al, 2013; Hershman et al, (Kmet et al, 2004). This tool was developed for systematic reviews 2013). These included 2286 trial participants (mean 254 partici- and used in previous reviews (Kmet et al, 2004; St Jacques et al, pants (median 126) in each trial). 2008; Agarwal et al, 2013; Laidsaar-Powell et al, 2013; Wassenaar All studies were prospective studies of SCPs in cancer survivors et al, 2014). Each eligible study was given an overall quality score (Table 1) (Grunfeld et al, 1996, 2006, 2011; Oeffinger et al, 2010; (Kmet et al, 2004), independently by two investigators. Items Jefford et al, 2011; Blaauwbroek et al, 2012; Spain et al, 2012; contributing to the quality score included study design, randomi- Blinder et al, 2013; Brothers et al, 2013). All studies used sation, outcome measures and analytic methods (Kmet et al, 2004). predominantly quantitative methodology (Grunfeld et al, 1996, Mean quality scores were reported for each study. 2006, 2011; Oeffinger et al, 2010; Jefford et al, 2011; Blaauwbroek et al, 2012; Spain et al, 2012; Blinder et al, 2013; Brothers et al, 2013; Hershman et al, 2013). Five studies evaluated SCPs in RESULTS survivors of breast cancer (Grunfeld et al, 1996, 2006, 2011; Blinder et al, 2013; Hershman et al, 2013), three in adult survivors of Search results and description of eligible studies. The initial childhood cancers (Oeffinger et al, 2010; Blaauwbroek et al, 2012; search identified 2262 studies. Of these, seven abstracts met Spain et al, 2012) and one each in survivors of gynaecological eligibility criteria and all of these remained eligible following review cancer (Brothers et al, 2013) and colorectal cancer (Jefford et al, of full-text articles (Oeffinger et al, 2010; Grunfeld et al, 2011; 2011). There were five randomised controlled trials (RCTs) Blaauwbroek et al, 2012; Spain et al, 2012; Blinder et al, 2013; (Grunfeld et al, 1996, 2006, 2011; Brothers et al, 2013; Brothers et al, 2013; Hershman et al, 2013). Five further studies Hershman et al, 2013), four in breast cancer (Grunfeld et al, were identified from reference lists of eligible studies and 1996, 2006, 2011; Hershman et al, 2013) and one in gynaecological referenced papers, and all of these were also eligible for inclusion cancer (Brothers et al, 2013). The remaining studies were non- in the final analysis (Grunfeld et al, 1996, 1999a, b, 2006; Jefford randomised observational studies (Oeffinger et al, 2010; Jefford et al, 2011). Three of the 12 eligible studies reported different et al, 2011; Blaauwbroek et al, 2012; Spain et al, 2012; Blinder et al, outcomes of the same randomised trial; hence, these were 2013). Four studies were conducted in the United States (Spain considered as one study for the purposes of this review et al, 2012; Blinder et al, 2013; Brothers et al, 2013; Hershman et al, (Grunfeld et al, 1996, 1999a, b). The findings of 10 studies are 2013), two in Canada (Grunfeld et al, 2006, 2011), one across the 1900 www.bjcancer.com | DOI:10.1038/bjc.2014.505 Survivorship care plans in cancer BRITISH JOURNAL OF CANCER Table 1. Studies reporting outcomes following implementation of SCPs in cancer (grouped by study design and ordered by year of publication) Age Author, (years, Quality year Tumour mean or Development/ score, (country) type Population N median) Description of trial Description of SCP introduction of SCP mean Randomised controlled trials (SCP or no SCP) Hershman BC o6 Weeks post 126 54 Randomised (standard Paper: Developed and 0.98 (0.96, et al, 2013 treatment follow-up or standard plus 1. Treatment summary introduced by nurse 1.00) (USA) SCP) 2. Follow-up care plan practitioner and Questionnaires (0, 3, 6 3. Late-effects information nutritionist in specialised months) 1-h consultation SCP template not described Brothers et al, Gynaecologic o1 Year post 121 60 Randomised to standard Paper SCP: Developed by research 0.88 (0.81, 2013 (USA) cancer treatment follow-up consultation by 1. Treatment summary assistant 0.96) oncologist or standard 2. Follow-up care plan Introduced by oncologist consultation plus SCP. 3. Information about (routine consultation) Questionnaire after SCP survivorship/follow-up consultation LiveStrong SCP template Grunfeld BC X3 Months post 408 62 All discharged to PCP Paper: SCP plus nurse- Developed by oncology 0.94 (0.88, et al, 2011 treatment Randomised (standard delivered educational nurse/team 1.00) (Canada) oncologist discharge session: Introduced by nurse in consultation or standard 1. Personal treatment with survivor plus SCP with nurse summary education) 2. Copy of national follow- Own SCP template up guidelines (patient developed edition) Questionnaire (12 months) 3. Summary table for follow-up 4. Supportive care resource kit Grunfeld BC 9–15 Months 968 61 Randomised (standard Paper SCP: Developed by oncology 1.00 (1.00, et al, 2006 post diagnosis follow up at hospital (no 1. Treatment summary team 1.00) (Canada) SCP) or PCP (with SCP) 2. Recommendations for Mailed to primary-care Own SCP template follow-up care physician Questionnaire 3. Indications for investigation/indications for referral back to cancer centre Grunfeld BC Survivors 296 59/62 Randomised (standard Paper SCP: Developed by oncology 1.00 (1.00, et al, 1996 (2 hospitals) follow-up hospital (no SCP) 1. Treatment summary team 1.00) (UK) or PCP (with SCP) 2. Individual follow-up Mailed to primary-care Own SCP template recommendations physician Questionnaire 3. Handbook on follow-up care Non-randomised prospective studies (whole cohort received SCP) Blinder et al, BC Newly diagnosed 174 58 Evaluation of ‘treatment Paper SCP: Developed by oncologist 0.78 (0.62, 2013 (USA) All oncologists plan and summary 1. Treatment plan (before Introduced by oncologist 0.94) ASCO BCR Pilot document’ chemo) in standard treatment or Program Introduction of survivorship 2. Summary document follow-up consultation Multicentre documents at start of (treatment summary/ chemo (if having chemo) or survivorship end of treatment recommendations) ASCO TPS template (given separately or Telephone survey after together depending on documents received treatment) Spain et al, Paediatric Adult long-term 111 30 SCP introduced at routine Paper SCP: Developed by medical 0.82 (0.69, 2012 (USA) cancer (adult follow-up clinic consultation 1. Treatment summary team 0.95) survivors) Own template (MSKCC) 2. Follow-up care plan Introduced by oncologist Telephone survey (1–6 in standard consultation weeks after SCP) Blaauwbroek Paediatric Survivors off- 73 38 Evaluation on-line SCP for Written web-based plan Developed by specialist 0.72 (0.67, et al, 2012 cancer (adult treatment X5 Survivors; survivors and PCPs (on-line and printed book); oncologist 0.77) (Netherlands) survivors) years, not in a 72 family Survivors made accessible on line to Self-administered website follow-up doctors appointment with PCP to survivor and PCP) viewed by survivor programme have care plan Components: Directed to survivorship implemented 1. Treatment summary consultation with PCP for www.bjcancer.com | DOI:10.1038/bjc.2014.505 1901 BRITISH JOURNAL OF CANCER Survivorship care plans in cancer Table 1. ( Continued ) Age Author, (years, Quality year Tumour mean or Development/ score, (country) type Population N median) Description of trial Description of SCP introduction of SCP mean Own template/website 2. Follow-up care plan/late implementation of developed effects monitoring plan follow-up plan Questionnaire for survivor and PCP Jefford et al, CRC o12 Months 10 55 SCP/survivorship package Paper: SCP (part of Developed by oncology 0.61 (0.58, 2011 after treatment introduced by nurse in survivorship package) nurse/medical team 0.64) (Australia) educational consultation Survivorship package Introduced by nurse at a IOM template components specialised end-of- Questionnaires and 1. Survivorship information treatment consultation interview (DVD, information booklet, question prompt list) 2. SCP, individualised treatment summary and follow-up care plan including supportive care information 3. Nurse-led end-of- treatment consultation 4. 3 Follow-up telephone calls Oeffinger Paediatric X5-Year 72 37 Evaluation of mailed SCP; Paper format mailed SCP: Not reported 0.76 (0.77, et al, 2010 Hodgkin survivors aim encourage late effects 1. Treatment summary 0.75) (USA/ lymphoma Elevated risk BC/ screening 2. Summary late effects Canada) (adult cardiomyopathy (echocardiography/ 3. Screening survivors) (multi-institu- mammography) via PCP recommendations tional database) Own SCP template Plus survivorship website Questionnaire (baseline) interview (6 months) Abbreviations: ASCO ¼ American Society of Clinical Oncology; BC ¼ breast cancer; BCR ¼ Breast Cancer Registry; CRC ¼ colorectal cancer; IOM ¼ Institute of Medicine; MSKCC ¼ Memorial Sloan-Kettering Cancer Center; PCP ¼ primary care physician; SCP ¼ survivorship care plan; TPS ¼ treatment plan and summary document. Quality score assessing the scientific quality of study (Kmet et al, 2004); maximum score ¼ 1.0. United States and Canada (Oeffinger et al, 2010), one in the United 2013; Brothers et al, 2013; Hershman et al, 2013). Copies were Kingdom (Grunfeld et al, 1996), one in the Netherlands frequently sent to the primary-care physician, oncologist or other (Blaauwbroek et al, 2012) and one in Australia (Jefford et al, health professionals involved in care, and survivors were 2011). Heterogeneity was noted in the point in the survivorship encouraged to share their SCP with family and practitioners who trajectory that recruitment occurred. Although one study recruited may not have been sent a copy. survivors at diagnosis or during chemotherapy (Blinder et al, In two studies, the SCP was developed specifically as a resource for 2013), there were others that included survivors of breast cancer, primary-care physicians to facilitate discharge from cancer centre- who had completed treatment several years before entering the based follow-up to general practice (Grunfeld et al, 1996, 2006). study (Grunfeld et al, 1996, 2006, 2011). Although these ‘discharge plans’ may not traditionally be considered The quality scores for the studies reflected the suboptimal to be SCPs, they met the definition of multifaceted plans for long- methodology of many studies (overall mean score ¼ 0.85, mean term care; hence, they were included in the review. These two studies for RCTs ¼ 0.96, mean for non-RCTs ¼ 0.74, Table 1). Maximum were conducted before the term ‘survivorship care plan’ was in possible score was 1.0. common use and they are considered to be landmark studies of novel models of follow-up care after cancer treatment (Grunfeld et al, 1996, SCPs – models evaluated 2006). It should be noted, however, that the effect of the SCPs in these studies is confounded by the fact that survivors with an SCP SCP format and content. Of the 10 studies, 9 evaluated paper- were followed up in primary care and those without an SCP were based SCPs (Grunfeld et al, 1996, 2006, 2011; Oeffinger et al, 2010; followed up in a cancer centre, as the trials were designed to evaluate Jefford et al, 2011; Spain et al, 2012; Blinder et al, 2013; Brothers the practitioner delivering the care rather than the care plan itself et al, 2013; Hershman et al, 2013) and one evaluated a web-based (Grunfeld et al, 1996, 2006). document (Blaauwbroek et al, 2012) (Table 1). Most SCPs for survivors of adult cancers were developed at the All studies evaluated SCPs that consisted of at least two end of treatment. The exception was a study that combined a components: a treatment summary and a plan for long-term treatment plan developed at the beginning of chemotherapy with follow-up care. Nine of the 10 SCPs were accompanied by other an SCP developed separately at the end of treatment (Blinder et al, survivorship resources such as booklets, DVDs or websites that 2013). In the studies of survivors of childhood cancers, one focused contained information about late effects of treatment, supportive on survivors over the age of 18 years, who were already attending a care, lifestyle/general health information or copies of follow-up follow-up clinic (Spain et al, 2012). The other two included only care guidelines (Grunfeld et al, 1996, 2006, 2011; Oeffinger et al, adult survivors who were treated more than 5 years ago and who 2010; Jefford et al, 2011; Blaauwbroek et al, 2012; Blinder et al, were not necessarily attending for follow-up care (Oeffinger et al, 2013; Brothers et al, 2013; Hershman et al, 2013). 2010; Blaauwbroek et al, 2012). Most of the SCPs were developed primarily as a resource for cancer survivors (Oeffinger et al, 2010; Grunfeld et al, 2011; Jefford SCP development and introduction. Several different models of et al, 2011; Blaauwbroek et al, 2012; Spain et al, 2012; Blinder et al, SCP delivery were evaluated. All SCPs were developed by the 1902 www.bjcancer.com | DOI:10.1038/bjc.2014.505 Survivorship care plans in cancer BRITISH JOURNAL OF CANCER treatment team. Some were delivered to the patient by an Results for individual outcomes are reported below, across all oncologist during a normal follow-up visit (Spain et al, 2012; studies. Blinder et al, 2013; Brothers et al, 2013) and others were delivered during a specialised educational consultation with a specialist nurse Health-related quality of life. The effect of SCPs on health-related (Grunfeld et al, 2011; Jefford et al, 2011; Hershman et al, 2013). quality of life (HRQOL) has been assessed in five studies (Grunfeld Three were sent by mail, either to the patient (Oeffinger et al, 2010) et al, 1996, 2006, 2011; Jefford et al, 2011; Hershman et al, 2013). or primary-care physician (Grunfeld et al, 1996, 2006), and one Four of these were the RCTs in breast cancer survivors, described was a web-based SCP with log-in details sent to patient and in the previous section (Grunfeld et al, 1996, 2006, 2011; primary-care physician (Blaauwbroek et al, 2012). Hershman et al, 2013). No difference was found when measuring All SCPs were developed using standardised templates. One HRQOL using SF-36 (Grunfeld et al, 1996, 2006, 2011) and FACT- study used the American Society of Clinical Oncology SCP B (Hershman et al, 2013). The other study measuring HRQOL template (American Society of Clinical Oncology & Cancer.Net, in detail was a small (n ¼ 10) non-randomised pilot study of 2013; Blinder et al, 2013), one the LiveStrong SCP template colorectal cancer survivors receiving an SCP as part of a (Brothers et al, 2013 and Livestrong Foundation Livestrong Care survivorship package (Jefford et al, 2011). In this study there was Plan (http://www.livestrongcareplan.org/)), one adapted the Insti- similar HRQOL before and after implementation, measured by the tute of Medicine template (Hewitt et al, 2006; Jefford et al, 2011) EORTC QLQ-C30 and QLQ-CR29 (Jefford et al, 2011). However, and the remaining studies developed their own template for use in there were fewer unmet needs after implementation of the package the study and/or for routine institutional use (Grunfeld et al, 1996, using the Cancer Survivors Unmet Needs scale (Jefford et al, 2011). 2006, 2011; Oeffinger et al, 2010; Blaauwbroek et al, 2012; Spain The investigators are currently conducting a randomised trial in et al, 2012; Hershman et al, 2013). this Australian population. Outcomes Distress/cancer-related distress. The RCTs that included the evaluation of distress in breast cancer survivors found no difference Randomised controlled trials. There have been five RCTs of SCPs (Grunfeld et al, 1996, 2006, 2011; Brothers et al, 2013; between the SCP and no-SCP groups (Grunfeld et al, 1996, 2006, 2011; Hershman et al, 2013)measured by the Hospital Anxiety and Hershman et al, 2013) (Table 2). The two earliest studies evaluating breast cancer follow-up care in primary care with a Depression Scale (Grunfeld et al, 1996, 2006) and the Impact of Events Scale (Grunfeld et al, 2011). In one of these RCTs, there was a standardised follow-up protocol (considered as an SCP) showed no difference in the primary outcomes of cancer recurrence and significantly lower level of health worry (measured by the Assessment of Survivor Concerns questionnaire) in the SCP group anxiety/depression, and they concluded that follow-up in primary care with the SCP (rather than in a hospital clinic) is safe at 3 months but this was not seen at the 6-month measurement (Hershman et al, 2013). There was also no difference in Profile of (Grunfeld et al, 1996, 2006). One of these studies (Grunfeld et al, Mood States score before and after receiving an SCP by mail in a 1996) evaluated satisfaction and economic outcomes (published group of adult survivors of childhood cancer considered to be at separately) (Grunfeld et al, 1999a, b) and found that patient substantially elevated risk of breast cancer or cardiomyopathy due to satisfaction with health care was higher in the primary care/SCP previous cancer treatment (Oeffinger et al, 2010). group, and that although more diagnostic tests were ordered in A study in a cohort receiving SCPs found that distress may be the primary care group, the cost of tests overall was no different lower in survivors with an SCP; 72% of breast cancer patients and the cost of follow-up to the patient (in the United Kingdom) surveyed after receiving an SCP said it gave them greater peace of was less in the primary care/SCP group compared with the mind (measured by a Likert scale developed for the study) (Blinder hospital group (Grunfeld et al, 1999a, b). et al, 2013). A later study by the same investigators evaluated a more formal, However, other studies found that distress may be higher in individualised SCP, randomising breast cancer survivors receiving survivors with an SCP (Jefford et al, 2011; Blaauwbroek et al, 2012; follow-up in primary care to receive an SCP or standard (primary) Spain et al, 2012). In one study, the proportion of colorectal cancer care without the SCP. They found that there was no difference in patients experiencing distress increased from 30% at baseline as the primary outcomes of various aspects of health-related quality measured by the Brief Symptom Inventory (BSI-18) to 37% at the of life but there was a statistically significant difference in the second assessment point (Jefford et al, 2011). This study also number of women who correctly identified their primary-care showed a slight increase in distress at follow-up, measured by the physician as the clinician responsible for their follow-up care, with Distress Thermometer (Jefford et al, 2011). In another study where more women doing so in the SCP group (Grunfeld et al, 2011). all participants had an SCP, 17% reported worrying ‘frequently’ or A further RCT, also in breast cancer survivors, also found no ‘almost constantly’ about their health (assessed by one item in the overall difference in the primary outcomes (Hershman et al, 2013). Memorial Symptom Assessment Scale) (Spain et al, 2012). Thirty- There was a transient decrease in cancer-related anxiety in women one per cent of childhood cancer survivors surveyed 2 weeks after in the intervention group but this was not sustained. The study also receiving an SCP at a routine follow-up visit said that reading the looked for differences between Hispanic and non-Hispanic treatment summary and care plan or at least one of its individual survivors, and there was no significant difference between racial sections had caused them distress (Spain et al, 2012), and in a study groups (Hershman et al, 2013). of childhood cancer survivors 20% of those given an on-line SCP The remaining RCT was conducted in gynaecological cancer said it triggered negative memories (Blaauwbroek et al, 2012) and survivors (Brothers et al, 2013). It evaluated response to the SCP 20% of the related primary care physicians surveyed were and perception of care in the consultation wherein the SCP was concerned that the SCP may trigger negative memories in their delivered. It was found that survivors overall were very satisfied patients (Blaauwbroek et al, 2012). These studies had a much lower with the care and consultation, and that there was no difference quality score than the RCTs that showed no increase in distress between the two groups in any of the outcomes measured (Table 1). (Brothers et al, 2013). The remaining five (non-RCT) studies were prospective studies in which the whole cohort received an SCP (Oeffinger et al, 2010; Survivor satisfaction with care plan. All studies evaluating the Jefford et al, 2011; Blaauwbroek et al, 2012; Spain et al, 2012; overall satisfaction of survivors with their SCP showed very high levels Blinder et al, 2013). of satisfaction. Colorectal cancer survivors expressed high levels of www.bjcancer.com | DOI:10.1038/bjc.2014.505 1903 BRITISH JOURNAL OF CANCER Survivorship care plans in cancer Table 2. Outcomes following implementation of SCPs in cancer (grouped by study design and ordered by year of publication) Author Description of (year) trial and SCP Outcomes Measures Results Conclusions Randomised controlled trials (SCP or no SCP) Hershman BC; standard follow- 1.Treatment satisfaction FACIT-TS-PS No difference No short-term benefit of SCP et al, 2013 up or standard plus (6 months) SCP; n ¼ 126 2.Impact of cancer IOC No difference Decrease in cancer-related worry (did not persist) 3.Health and cancer worry ASC Less worry in intervention group at 3 months; did not persist at 6-month evaluation 4.HRQOL FACT-B No difference 5.Depression CES-D No difference 6.Cancer symptoms Memorial Symptoms No difference Assessment Scale 7.Ethnicity (Hispanic/non- All measures No significant persistent Hispanic) difference Brothers Gynaecologic cancer; 1.Satisfaction (administrative Administrative services No difference No effect of SCP on rating of et al, 2013 standard consultation services) scale health services or standard plus 2.Satisfaction (clinical services) Clinical services scale No difference LiveStrong SCP; 3.Satisfaction (educational Educational services scale No difference n ¼ 121 services) 4. Satisfaction (helpfulness of Helpfulness of Written No difference written materials) Materials scale Grunfeld BC; usual follow-up 1. Cancer-related distress Impact of events scale No difference SCPs do not improve PROs. et al, 2011 (PCP) or usual plus 2.General distress POMS No difference Patients with SCPs are SCP; n ¼ 408 3.HRQOL SF 36, PCS and MCS No difference significantly more aware of 4.Patient satisfaction MOS-PSQ No difference doctor responsible for 5.Continuity/coordination of care CCCQ No difference follow-up care 6.Health service (a) Identify clinician responsible New measure developed SCP group better identified for care PCP as person responsible for follow-up (P=0.005) (b) Number of visits to Number of visits No difference oncologist Grunfeld BC; usual follow-up 1.Recurrence Recurrence rate No difference Serious events rare; equal et al, 2006 (hospital clinic, no frequency in both groups SCP or PCP with 2.Serious clinical event Event rate No difference BC patients can safely be SCP); n ¼ 968 followed-up by PCP 3.Death Death rate No difference 4.HRQOL SF-36 No difference 5.Distress HADS No difference Grunfeld BC; randomised to 1.Recurrence Recurrence rate No difference PCP follow-up no increase in et al, 1996 usual follow-up at time to diagnosis. hospital clinic (no 2.Time to diagnosis recurrence Time to recurrence No difference No difference in anxiety, or SCP) or follow-up with deterioration in HRQOL PCP (with SCP); 3.HRQOL EORTC symptom scale No difference PCP less costly to patient; no n ¼ 296 difference in cost of tests SF-36 No difference PCP follow-up higher satisfaction 4.Distress HADS No difference 5.Economic evaluation Cost calculation PCP follow-up visits less costly than hospital follow-up; cost of diagnostic tests no diff 6.Satisfaction with care UK College of Health PCP follow-up higher level of patient satisfaction than hospital follow-up Non-randomised prospective studies (whole cohort received SCP) Blinder BC; ASCO template 1. Perception about Likert scale 94% Said helps Survivors react favourably et al, 2013 treatment plan and communication with and communication between when treatment plans are summary document between physicians patient and doctor; 82% personalised and given at consultation; between health professionals implemented as part of their n ¼ 174 oncologic care. 2. Perception about peace of Likert scale 72% Greater peace of mind mind 3. Perception about using Likert scale 56% Likely to use again documents in future 4. Perceptions about support Likert scale 70% Right amount of support from health professionals; 69% right amount of information about cancer and treatment 5. Perceptions about Likert scale 96% Understood planned preparedness for treatment treatment; 96% felt prepared for what to expect from their treatment 1904 www.bjcancer.com | DOI:10.1038/bjc.2014.505 Survivorship care plans in cancer BRITISH JOURNAL OF CANCER Table 2. ( Continued ) Author Description of (year) trial and SCP Outcomes Measures Results Conclusions Spain et al, Paediatric cancer 1. Retention of documents Single item 95% Retention Survivors retain, understand, 2012 (adult survivors); and value the treatment SCP introduced in summary and care plan in a consultation; n ¼ 111 real-world clinic setting 2. Understanding of SCP Single item 95% Reported understanding Receipt of SCP did not cause worry or concern in majority 3. Value of SCP Likert scale 93% Moderately or extremely valuable 4. Dissemination of document Single item 44% Shared with others in personal circle 5. Concern raised by receiving Single item 14% Caused concern; 86% not SCP 6. Worry about health Memorial Symptom 17% Frequent or almost Assessment Scale constant worry about health 7. Preferences for format of SCP Preferences for paper 95% interest in an online or form vs wallet card, wallet-card version of the online, e-mail treatment summary and care plan Blaauw- Paediatric cancer 1. User friendliness (website) Survey 95% Survivors/97% PCPs said The availability of a web- broek et al, (adult survivors); user friendly based personalised SCP 2012 web-based SCP for facilitates follow-up care in survivor and PCP; shared-care model (late n ¼ 73 effect outpatient clinic and PCP) 2. Satisfaction (SCP information) Survey 89% Survivors/100% PCP said SCP appreciated by info is sufficient survivors 3. Negative memories triggered? Survey 20% Survivors negative memories 4. Confidence in PCP Survey 82% Survivors/93% PCPs confident Jefford CRC; nurse-delivered 1. Unmet needs CASUN scale 7 Unmet needs at baseline, Feasibility confirmed et al, 2011 survivorship package 4 at follow-up with SCP; n ¼ 10 2. Distress BSI-18 30% Distress (baseline); Acceptability confirmed 37% (follow-up) 3. HRQOL EORTC QOL Mean 71 (baseline), 69 Participants valued all questionnaire QLQ-C30/ (follow-up) intervention components QLQ-CR29 4. Satisfaction Survey developed for High level of survivor Resource intensive for health study satisfaction professionals 5. Feasibility Survey developed for Feasible but resource intensive study Oeffinger Paediatric Hodgkin 1. Use of SCP Survey 78% Remembered receiving Feasibility demonstrated et al, 2010 lymphoma SCP; half had shared plan (adult survivors); with PCP paper-based SCP 2. Screening Practices Survey 41% Women had Increase screening rates; mailed to random mammogram within SCP favorably received. sample from multi- 6 months; 20% had institutional database; recommended n ¼ 72 echocardiogram; additional 1/3 planned to have recommended testing in the next 6 months 3. PCP interest in study Survey Only 19% of PCPs approached Website did not add value to by survivors agreed to mailed materials participate in survey Abbreviations: ASC ¼ Assessment of Survivor Concerns; BC ¼ breast cancer; BSI ¼ Brief Symptom Inventory; CASUN ¼ Cancer Survivors Unmet Needs; CES-D ¼ Center for Epidemiologic Studies Depression Scale; CCCQ¼ Continuity/coordination of care; CRC¼ colorectal cancer; EORTC¼ European Organisation for Research and Treatment of Cancer; FACT-B¼ functional assessment of cancer therapy-breast; FACIT-TS-PS ¼ functional assessment of chronic illness therapy-treatment satisfaction patient-satisfaction; HADS ¼ Hospital Anxiety and Depression Scale; HRQOL ¼ health-related quality of life; IOC ¼ Impact of Cancer Scale; MOS-PSQ ¼ Medical Outcomes Study-Patient Satisfaction Questionnaire ; PCP ¼ primary care physician; POMS ¼ profile of mood states; PRO ¼ patient reported outcome; SCP ¼ survivorship care plan. satisfaction in interviews after receiving an SCP in a nurse-led cxonsultation (including in the intervention arm, the LiveStrong consultation; it was used as part of a survivorship package (including SCP) and there was no difference between the groups in rating of DVD and face-to-face educational session and follow-up phone calls) helpfulness (Brothers et al, 2013). and participants valued all components of the intervention (Jefford In the two studies that asked survivors to rate the amount of et al, 2011). Positive feelings about the SCP were reported in a group information contained in the SCP (Blaauwbroek et al, 2012; Spain of adult survivors of childhood cancer considered to be at substantially et al, 2012), over 80% of survivors thought the amount elevated risk of breast cancer or cardiomyopathy due to previous of information was right (Blaauwbroek et al, 2012; Spain et al, cancer treatment (Oeffinger et al, 2010). 2012); in one of the studies, the primary-care physicians were In one of the RCTs, gynaecological cancer survivors were asked also asked and 100% were satisfied with the SCP (Blaauwbroek about the helpfulness of written materials that were given at et al, 2012). www.bjcancer.com | DOI:10.1038/bjc.2014.505 1905 BRITISH JOURNAL OF CANCER Survivorship care plans in cancer Understanding of information in the SCP. Survivor understanding no SCP (measured by Continuity/coordination of care ques- of SCP content was assessed in two studies (Spain et al, 2012; Blinder tionnaire (Grunfeld et al, 2011). et al, 2013). In all of these, survivors were asked whether they  Survivor perception of communication role of SCP: 94% of understood the document, and all reported a high level of perceived breast cancer survivors surveyed after receiving an SCP thought understanding. This included self-reported understanding of SCP it would be useful for communication between patient and content in 98% (Blinder et al, 2013) of breast cancer survivors and in doctor; 82% thought it would improve communication between 95% of childhood cancer survivors (Spain et al, 2012). health professionals (measured by a Likert scale developed for the study) (Blinder et al, 2013). Patient satisfaction with medical care. In two RCTs in breast Sharing of SCP: In studies of adult survivors of childhood cancer, cancer survivors, higher levels of satisfaction with many aspects of 44% (Spain et al, 2012) and 50% (Oeffinger et al, 2010) said they the overall care and the consultation were seen in women having had shared their SCP with other people in their personal circle, follow-up in primary care with an SCP compared with those and breast cancer survivors reported using the SCP to facilitate having follow-up care without an SCP at a hospital clinic (Grunfeld discussions with family members (Blinder et al, 2013). et al, 1996, 2006). The follow-on study to this showed no difference in these outcomes in the SCP compared with the no-SCP group None of the studies included in the review reports long-term when all were followed-up in primary care (Grunfeld et al, 2011). outcomes following the implementation of an SCP. This includes The other RCTs (in gynaecological cancer and breast cancer an absence of data regarding quality of life/psychosocial outcomes, survivors) also showed no difference in perception of care adherence to recommended screening regimens and long-term evaluated following a single consultation where the SCP or recurrence and survival data. standard care was delivered (Brothers et al, 2013) or in satisfaction with care over a 6-month period (Hershman et al, 2013). Another study evaluating satisfaction with care found that 70% of breast DISCUSSION cancer survivors (all receiving a SCP) surveyed after receiving the plan felt they got the right amount of general support from health This systematic review identified 10 studies (5 of them were RCTs) professionals; 69% felt they received the right amount of that met inclusion criteria. Study populations included survivors of information about cancer and treatment (Blinder et al, 2013). breast, gynaecological, colorectal and childhood cancer, and several different models of SCP were evaluated. Although levels of survivor Uptake of recommended screening. One study was designed satisfaction with SCPs were very high, no significant effect was primarily to assess whether an SCP received by mail would increase found on survivor distress, satisfaction with care, cancer-care uptake of recommended screening for late effects in a group of coordination or oncological outcomes in the RCTs. One study adult survivors of childhood cancer considered to be at suggested a positive impact on reducing unmet needs (Jefford et al, substantially elevated risk of breast cancer or cardiomyopathy 2011). Potential harm (increase in distress) was suggested in some due to previous cancer treatment (Oeffinger et al, 2010). In this non-randomised studies. Resource issues were identified as a study (where all participants received an SCP), 41% of women had significant barrier to implementation. a mammogram within 6 months of receiving the care plan; 20% of Two questions arose from the IOM report (Hewitt et al, 2006): survivors had a recommended echocardiogram; and an additional (1) will treatment summaries and SCPs improve care for cancer one-third of the group planned to have testing in the next 6 survivors and (2) what is the ideal model for implementation of months (Oeffinger et al, 2010). It is not clear whether this was an SCPs and their incorporation into routine practice? improvement on the screening rate in a similar population without In 2006 when the IOM recommended the development of a an SCP. No long-term data were provided in any studies; thus, it is treatment summary and SCP for every cancer survivor (Hewitt unknown whether this will translate to improved survival. et al, 2006), only two of the studies identified in this review (evaluating outcomes of models of survivorship care similar to that Feasibility. Feasibility and provider time factors were reported in proposed by the report) had been published (Grunfeld et al, 1996, five studies (Grunfeld et al, 1999b; Jefford et al, 2011; Spain et al, 2006). Since then, there have been many studies showing that 2012; Brothers et al, 2013; Hershman et al, 2013). survivors are very enthusiastic about the concept of an SCP In a pilot study of colorectal cancer survivors, SCP use was (Hewitt et al, 2007; Kantsiper et al, 2009; Brennan et al, 2011; considered feasible but resource intensive; it was estimated that Marbach and Griffle, 2011; Smith et al, 2011); this is accompanied 1–1.5 h was required for an oncology nurse to complete SCPs and, by cautious interest from many oncology health professionals in addition, staff with clinical experience had to verify the accuracy (Hewitt et al, 2007; Brennan et al, 2010) and some concerns from of the SCP (Jefford et al, 2011). In another study, an SCP developed other professionals (Hewitt et al, 2007; Kantsiper et al, 2009). for adult survivors of childhood cancer was estimated to take the Many models and methods of delivery have been proposed, and medical team 1–4 h to develop (Spain et al, 2012). In the RCT in survivor and health provider preferences have been assessed (de gynaecological cancer survivors, it took a research assistant an Bock et al, 2004; Cox et al, 2006; Ganz and Hahn, 2008; Greenfield average of 1.5 h (range 1–2) to prepare the SCP (Brothers et al, et al, 2009; Marbach and Griffle, 2011). 2013). A further study commented that development of the SCP Research has progressed from exploring preferences to focusing had a significant cost related to use of health resources but did not on evaluating different models of survivorship care planning. quantify this (Hershman et al, 2013). Despite this burgeoning interest, only 10 studies were identified Other outcomes for inclusion in the current review (Grunfeld et al, 1996, 2006, 2011; Oeffinger et al, 2010; Jefford et al, 2011; Blaauwbroek et al, Oncological outcomes: There was no difference in recurrence 2012; Spain et al, 2012; Blinder et al, 2013; Brothers et al, 2013; (Grunfeld et al, 1996, 2006) or serious clinical events (Grunfeld Hershman et al, 2013). None of the five randomised studies et al, 2006) in two RCTs of breast cancer survivors having identified found a significant or sustained benefit to quality of life, follow-up with SCP implemented by primary-care physician vs distress, quality of care/care coordination or oncological outcomes survivors having follow-up in a hospital clinic without SCP from the SCP. It is unclear from detailed evaluation of these studies (Grunfeld et al, 1996, 2006). whether the failure to detect benefits is due to these SCPs actually Survivor perception of care coordination: There was no not being beneficial, or whether it is related to other factors. Some difference in an RCT of primary care follow-up with SCP or of these studies may fail to identify the most appropriate outcomes 1906 www.bjcancer.com | DOI:10.1038/bjc.2014.505 Survivorship care plans in cancer BRITISH JOURNAL OF CANCER to evaluate, use of insensitive outcome measures, or fail to include At present, there exists a lack of long-term outcome data about or identify a subgroup of cancer survivors who may benefit from the impact of SCPs. It is unknown whether there may be significant SCPs more than others. Using the example of breast cancer, it is benefits later in the survivorship phase of care and it is unknown possible that one outcome of an SCP may be better compliance whether SCPs will change long-term oncological outcomes with adjuvant endocrine therapy but this has not been measured. It (recurrence and survival). None of the studies used has an impact is also possible, for example, that breast cancer survivors, a group on recurrence and/or survival as an aim or an outcome, as SCPs that is overrepresented in the RCTs of SCPs, and a group that is have been developed primarily as a tool to improve psychosocial already relatively well informed and well supported, may not be the and care coordination (rather than oncological) outcomes. survivors most likely to benefit from SCPs. This study has several limitations. There is a small body of Many of the studies in the review asked survivors for feedback extremely heterogeneous literature on which to base conclusions on the SCP they were given (Oeffinger et al, 2010; Jefford et al, and few randomised trials. This has been noted in previous 2011; Blaauwbroek et al, 2012; Spain et al, 2012; Brothers et al, discussions about interpretation of the evidence (Parry et al, 2013). 2013). The feedback was extremely positive, consistent with the The populations represented in the studies have survivors of previous background survivorship research showing great enthu- different tumour types at different stages of survivorship repre- siasm for SCPs from cancer survivors. In the studies in this review, sented. A number of different models of care have been presented, survivors reported having a good understanding of the content of including different SCP templates, formats and methods of delivery. the SCP (Spain et al, 2012; Blinder et al, 2013), valuing and sharing Different outcomes have been evaluated using different measure- the information with clinicians and family members. These studies ment tools and it is unclear which tools are most appropriate. The suggest that despite having no measureable benefit in RCTs, SCPs ‘ceiling effect’ is an additional challenge; for example, in these appear to be highly valued by survivors. However, as patients and studies, survivors reported high levels of satisfaction with care survivors are often very positive about elements of their care, these before an SCP was introduced, making it difficult to detect an data are not sufficient to warrant routine use of SCPs. improvement if it existed (Grunfeld et al, 1996, 2011; Hershman Several studies have raised the possibility that there may be some et al, 2013). However, given the diverse needs of cancer survivors harm from SCPs; they may increase distress in some survivors and the large spectrum of health environments in which survivors (Jefford et al, 2011; Blaauwbroek et al, 2012; Spain et al, 2012). This are treated, this heterogeneity also reflects the necessity for must be considered when SCPs are being developed and implemen- survivorship care planning to be adapted to local needs and ted. It is likely that there are some survivors (possibly ‘information- resources. Reviewing these varied models will aid this process. This seeking’ survivors) more suited to SCP use than others. It also would be enhanced by consistency in the approach to planning highlights the need for flexibility and survivor input in determining trials (distinguishing the physical SCP document from the context the appropriateness and the content of an SCP. of its delivery/implementation), consistency in measurement tools A 2011 study evaluating the uptake and quality of treatment and consistency in the description of results (Parry et al, 2013). summaries and SCPs in 13 LiveStrong Centers of Excellence in Cancer Survivorship Network showed relatively poor adherence to CONCLUSION IOM recommendations even in dedicated cancer institutes and their affiliated community-based treatment centres (Stricker et al, This study has identified and evaluated 10 studies reporting 2011). Less than half of IOM content recommendations for outcomes after implementation of SCPs for cancer survivors. The treatment summaries were met (mean 46%) and less than two- emerging evidence has shown few measureable benefits to support thirds of the recommendations for SCPs were met (mean 59%). the use of SCPs (i.e., making survivors more aware of who the This suggests that there are significant barriers to the implementa- clinician responsible for their care is, and possibly reducing unmet tion of SCPs even when there is extremely strong commitment to needs of some survivors). High levels of survivor satisfaction with the concept (Stricker et al, 2011). Barriers to quality survivorship SCPs was reported and self-reported levels of understanding were care were hypothesised to include reimbursement issues, limited very high. Suggestion of potential harm was found, with some (non- institutional resources including personnel, time and information/ randomised) studies reporting an increase in cancer-related distress. communications systems (Stricker et al, 2011). Significant barriers to the implementation of SCPs were identified, The current review has also highlighted resource issues including the intense resources required. Further studies of (particularly time) (Grunfeld et al, 1999b; Jefford et al, 2011; innovative SCP models, evaluating a range of outcomes in various Spain et al, 2012; Brothers et al, 2013). It was estimated in these survivor populations and using different outcome measures are studies that the development of an SCP takes at least 1 h (and up to required. The long-term effect of SCPs on psychosocial, oncological 4 h) regardless of whether it is developed by a doctor, a nurse or a and resource outcomes should be evaluated. It is unlikely that one research assistant (Grunfeld et al, 1999b; Jefford et al, 2011; Spain model will suit all survivors, cancer centres or tumour types (e.g., et al, 2012; Brothers et al, 2013). Current health-care funding younger patients may prefer electronic care plans, and the content models do not allow for remuneration for this considerable time. may need to focus more on managing endocrine symptoms when The studies in this review suggest that outcomes following delivery treatment-induced premature menopause occurs). Research addres- of the SCP by nurses (Grunfeld et al, 2011; Jefford et al, 2011; sing these variables in a consistent manner is needed. Hershman et al, 2013) and primary-care physicians (Grunfeld et al, 1996, 2006, 2011; Blaauwbroek et al, 2012) (rather than specialist oncologists), and by mail (Grunfeld et al, 1996, 2006; Oeffinger ACKNOWLEDGEMENTS et al, 2010) or on-line(Blaauwbroek et al, 2012) (rather than in a face-to-face consultation) are similar. 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Published: Oct 14, 2014

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