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Prevalence and correlates of cancer survivors’ supportive care needs 6 months after diagnosis: a population-based cross-sectional study

Prevalence and correlates of cancer survivors’ supportive care needs 6 months after diagnosis: a... Background: An understanding of the nature and magnitude of the impact of cancer is critical to planning how best to deliver supportive care to the growing population of cancer survivors whose need for care may span many years. This study aimed to describe the prevalence of and factors associated with moderate to high level unmet supportive care needs among adult cancer survivors six months after diagnosis. Methods: A population-based sample of adult cancer survivors diagnosed with one of the eight most incident cancers in Australia was recruited from two state-based cancer registries. Data for 1323 survivors were obtained by self-report questionnaire and linkage with cancer registry data. Unmet needs were assessed by the 34-item Supportive Care Needs Survey (SCNS-SF34). The data were examined using chi-square and multiple logistic regression analyses. Results: A total of 444 (37%) survivors reported at least one ‘moderate to high’ level unmet need and 496 (42%) reported ‘no need’ for help. Moderate to high level unmet needs were most commonly reported in the psychological (25%) and physical aspects of daily living (20%) domains. The five most frequently endorsed items of moderate to high unmet need were concerns about the worries of those close to them (15%), fears about the cancer spreading (14%), not being able to do the things they used to do (13%), uncertainty about the future (13%) and lack of energy/tiredness (12%). Survivors’ psychological characteristics were the strongest indicators of unmet need, particularly caseness for anxious preoccupation coping which was associated (OR = 2.2-5.9) with unmet need for help across all domains. Conclusions: Unmet supportive care needs are prevalent among a subgroup of survivors transitioning from active treatment to survivorship, although lower than previously reported. In addition to coping support, valuable insight about how to prevent or address survivors’ unmet needs could be gained by examining the substantial proportion of survivors who report no unmet needs. Background and support needs, and the extent to which these are met Cancer is increasingly recognised as a chronic illness, with by current services is critical to guiding where to focus the number of people living with a history of the disease limited healthcare resources in order to deliver care that is expected to triple to 75 million people worldwide in 2030 responsive to the needs of the growing population of can- [1]. While most survivors adjust well over time [2], a mi- cer survivors. nority are at risk of adverse physical [3,4], psychological There are a number of different approaches for more [5,6] and social [7,8] effects which may emerge soon after fully understanding survivors’ cancer experiences and diagnosis and treatment, or in the ensuing years. Detailed quantifying their outcomes including assessment of quality knowledge about the issues faced by survivors, their care of life, satisfaction with health care, and needs assessment [9,10]. Needs assessment not only identifies needs and their importance as perceived by the survivor, but also the * Correspondence: allison.boyes@newcastle.edu.au Priority Research Centre for Health Behaviour, University of Newcastle & extent to which they are met [10]. The key strength of this Hunter Medical Research Institute, Newcastle, Australia approach is that it enables resources to be focused on the Full list of author information is available at the end of the article © 2012 Boyes et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Boyes et al. BMC Cancer 2012, 12:150 Page 2 of 10 http://www.biomedcentral.com/1471-2407/12/150 issues that survivors have expressed they want addressed late treatment to early survivorship phase of the cancer in order to achieve optimal wellbeing. continuum. Increasing interest in the application of needs assess- ment to cancer care has resulted in the development of a Participants & procedures number of valid and reliable cancer-specific tools asses- The sample was recruited from new notifications to the sing a comprehensive range of needs [9,11] and a grow- two largest state-based cancer registries in Australia which ing literature describing their administration across a together account for 60% of all new cancer cases diagnosed variety of settings, stages in the cancer journey, and [26]. Eligibility was restricted to those who were (1) diag- populations. A recent systematic review found that while nosed in the previous six months with their first primary the prevalence of unmet need among cancer survivors cancer of one of the top eight incident cancer types in varied from 30% to 50% across studies, it is typically Australia (prostate, colorectal, female breast, lung, melan- highest in the psychological, health information, and oma, non-Hodgkin’s lymphoma, leukaemia, head & neck); physical aspects of daily living domains [12]. While evi- (2) aged between 18 and 80 years and living in the state of dence about the factors that influence survivors’ unmet New South Wales (NSW) or Victoria (VIC) at diagnosis; needs is inconsistent, a number of studies have found (3) considered by their physician to be aware of their diag- that those who are not in remission [13-15], are psycho- nosis, physically and mentally capable of participating in logically distressed [14,16-18] and geographically isolated the study, and sufficiently proficient in English to complete [15,19] are more likely to report unmet needs. However, a questionnaire; and (4) alive. the literature is plagued by a lack of consistency in the The recruitment and survey methodology have been methods used to measure, classify and report unmet described in detail previously [22]. Briefly, eligible potential needs, making it difficult to compare between studies participants whose physician had given active (NSW) or and to generalise findings [12]. passive (VIC) consent for them to be contacted about the The seminal publication, From Cancer Patient to Cancer study received a mailed package from the registries. Eli- Survivor: Lost in Transition [20], focused the attention of gible survivors who agreed to the registries passing on the cancer control community on the survivorship stage of their contact details to the researchers were sent a self- the cancer trajectory with a series of recommendations to administered questionnaire to complete. Non-responders accelerate progress in this area, including the need for were sent a reminder questionnaire three weeks later and large-scale studies using valid and reliable measures with received a reminder phone call after a further three weeks. diverse cancer populations to be conducted as a priority. A three week interval was used to allow adequate time for Furthermore, a recent review [21] identified unmet sup- survivors to receive, respond to and return the mailed portive care needs as one of four main gaps in knowledge questionnaire prior to receiving a reminder. Return of the about the problems faced by adult cancer survivors. To questionnaire to the research team indicated voluntary guide care planning and help inform future health service consent to participate. The Human Research Ethics Com- delivery, the current study aimed to (1) describe the preva- mittees of the University of Newcastle (H-199-1101), Can- lence of adult cancer survivors’ supportive care needs, cer Institute NSW and Cancer Council Victoria approved overall and by cancer type, at six months post-diagnosis; the study. (2) identify the most prevalent items of moderate to high level unmet need and (3) identify the individual, disease, Measures health behaviour, psychological and social factors asso- Data were collected by self-administered questionnaire ciated with survivors reporting moderate to high level un- with additional clinical information obtained from the met psychological, health systems and information, Cancer Registries for each participant. physical and daily living, patient care and support, and sexuality needs. Outcome measure Supportive care needs were measured by the 34-item Methods Supportive Care Needs Survey (SCNS-SF34) which This paper is based on Time 1 (T1) data collected at six assesses cancer-specific perceived needs across five factor months post-diagnosis from survivors participating in analytically derived domains: psychological (10 items), the population-based longitudinal Cancer Survival Study health systems and information (11 items), patient care (CSS). The study protocol and aspects of the study find- and support (5 items), physical and daily living (5 items), ings have been reported in detail elsewhere [22,23]. and sexuality (3 items) [27]. For each item, respondents While the term cancer ‘survivor’ has varied definitions indicate their level of need for help over the last month [24], this study considers ‘survivor’ to encompass anyone as a result of having cancer on a five point Likert scale diagnosed with cancer, from the time of diagnosis to the with the following response options: 1 = no need, not ap- end of life [25]. This paper focuses on survivors in the plicable; 2 = no need, satisfied; 3 = low need; 4 = moderate Boyes et al. BMC Cancer 2012, 12:150 Page 3 of 10 http://www.biomedcentral.com/1471-2407/12/150 need; and 5 = high need. For each domain, survivors were before and since the cancer diagnosis. Coping was categorised as having a ‘moderate to high’ level of need if assessed by the 21-item Mini Mental Adjustment to they selected response options 4 or 5 to at least one item Cancer Scale (Mini-MAC) which measures five cancer- in the domain or ‘no to low’ need if they selected re- specific coping strategies: helplessness-hopelessness, anx- sponse options 1, 2 or 3 to all items in the domain [28]. ious preoccupation, fighting spirit, cognitive avoidance The SCNS-SF34 has high internal consistency with and fatalism [35]. The mini-MAC has demonstrated reli- Cronbach’s alpha of at least 0.86 for each subscale, and is ability with Cronbach alpha coefficients for each subscale moderately correlated with the Hospital Anxiety and De- ranging from 0.62–0.88. Raw scores for each subscale pression Scale, Distress Thermometer and Quality of Life were standardised from 0 to 100 [35] and survivors who Questionnaire-Core 30 (QLQ-C30) [27]. Furthermore, scored in the top 16% of each distribution were classified cancer patients have reported a preference for the as a ‘case’ on that specific coping strategy [36]. SCNS-SF34 over the QLQ-C30, Functional Assessment of Cancer Therapy-General and Kingston Needs Assess- Social ment–Cancer as a strategy for conveying their needs to Social support was assessed by the MOS Social Support health care providers [29]. Survey (MOS − SSS) which measures four domains of functional support: emotional/informational, tangible, af- fectionate, and positive social interaction [37]. Raw sub- Study factors scale scores were standardised from 0 to 100 and Individual survivors who scored in the bottom one-third of each Age at diagnosis and sex were obtained from the cancer distribution were classified as having ‘low’ availability of registry. Current marital status, highest level of education that particular type of social support (Sherbourne, per- completed, health insurance coverage, current employment sonal communication). The survey has high internal situation, geographical location, size of household, and consistency with alpha coefficients exceeding 0.91 for presence of physical co-morbidities were obtained by each subscale and demonstrated validity with the chronic questionnaire. illness population [37]. Disease and treatment Statistical methods Primary cancer type and spread of disease at diagnosis Due to small numbers, data from survivors diagnosed were obtained from the cancer registry, with survivors’ with non-Hodgkin’s lymphoma or leukaemia were com- cancer categorised as ‘early/less progressed’ (in-situ or bined and categorised as ‘haematological’ cancer. The localised; grade 1 or 2; T1 or T2), ‘late/more progressed’ proportion of survivors who reported either ‘no needs’ (invasion of adjacent organs, regional nodes or distant (ie. selected response option 1 or 2 to all 34 items), ‘low metastases; grade 3 or 4; not T1) or ‘not applicable’ needs’ (ie. selected response option 3 to at least one (haematological cancers). Extent of disease at six months item, but did not select response option 4 or 5 to any post-diagnosis, and cancer treatments received in the last items) and ‘moderate to high needs’ (ie. selected re- month were obtained by questionnaire. sponse option 4 or 5 to at least one item) was calculated overall and by cancer type, with 95% confidence inter- Health behaviours vals. The association between cancer type with reporting Seven questionnaire items adapted from existing measures ‘no needs’, ‘low needs’ and ‘moderate to high needs’ was assessed health behaviors: two items assessed smoking be- examined using chi-square analyses. For each domain, havior, with participants classified as ‘current,’ ‘former’ or the proportion of survivors who reported ‘moderate to ‘never smoker’ [30]; two items assessed alcohol consump- high needs’ versus ‘low or no needs’ was calculated with tion [31] and participants who consumed more than two 95% confidence intervals. The proportion of survivors standard drinks on any day were classified as being at who endorsed each SCNS-SF34 item at either a ‘moder- ‘increased lifetime risk of harm’ from alcohol related injury ate’ or ‘high’ level was calculated with 95% confidence or disease [32]; and three items assessed physical activity intervals and the ten most prevalent items and their cor- [33] with participants classified as ‘sufficiently active’ (at responding domain identified. Chi-square analyses exam- least 150 minutes of physical activity per week), ‘insuffi- ined the association between survivors’ individual, ciently active’ (participating in some activity but not enough disease, health behaviour, psychological and social char- in total time) or ‘sedentary’ (no physical activity) [34]. acteristics with ‘moderate to high needs’ versus ‘low or no needs’ for each domain. Multiple logistic regression Psychological analyses were then conducted to examine factors asso- Two questionnaire items assessed treatment for mental ciated with ‘moderate to high needs’ while adjusting for health illness (eg. depression, anxiety, schizophrenia) potential confounders. Variables with a p-value ≤0.2 on Boyes et al. BMC Cancer 2012, 12:150 Page 4 of 10 http://www.biomedcentral.com/1471-2407/12/150 univariate analyses were included in a backward logistic (n = 207) had five or more ‘moderate to high’ needs. regression model for each domain. Variables were There was significant variation across cancer types in the removed from the model if they had a p-value <0.1 on percentage of survivors who reported unmet needs the likelihood ratio test; those with a p-value ≤0.05 were (χ = 91.39; df = 12; p< 0.001). ‘Moderate to high’ level considered statistically significant. unmet needs were most common amongst survivors of lung cancer with more than half (60%; 95% CI: 51%-69%) endorsing at least one item. Conversely, almost two- Sample size thirds (65%; 95% CI: 58%-72%) of melanoma survivors The registries were required to recruit a quota of 1660 reported ‘no need’ for help with all items. eligible survivors who consented to being contacted At the domain level, 318 (25%; 95% CI: 23%-27%) sur- about the study. Based on previous experience [6], we vivors reported unmet psychological needs, 251 (20%; estimated that 80% of survivors would return a com- 95% CI: 18%-22%) reported unmet physical aspects of pleted survey, resulting in a sample size of approximately daily living needs, and 232 (18%; 95% CI: 16%-20%) 1320 at T1. Assuming a prevalence of moderate to high reported unmet health systems and information needs at needs of 20%, a sample of this size would allow the pro- a ‘moderate to high’ level. Only 167 (13%; 95% CI: 11%- portion of survivors with unmet needs to be estimated 15%) and 103 (8%; 95% CI: 7%-9%) survivors respectively with 95% confidence intervals within ± 3%, and provide reported ‘moderate to high’ level unmet need for help 90% power to detect differences of 7% between categor- with sexuality, and patient care and support domains. ies of study factors associated with moderate to high needs at the 5% significance level. Most prevalent ‘moderate to high’ level unmet supportive care needs Results The 10 highest ranked items that survivors reported a Sample ‘moderate to high’ level of need for help with are shown Of the 3877 potential participants assessed for study eli- in Table 2. Overall, individual items were endorsed by gibility, 3315 were deemed eligible and of these, 1691 relatively few (≤15%) survivors. The highest ranked items (51%) consented to being contacted about the study by were concerns about the worries of those close to you the researchers. A total of 1360 eligible survivors (15%), fears about the cancer spreading (14%), not being returned a T1 survey (41% response rate at T1). Thirty able to do the things they used to do (13%), uncertainty seven participants who returned their T1 survey more about the future (13%), and lack of energy/tiredness than 9 months after diagnosis were excluded from ana- (12%). Half of the top 10 needs items were from the psy- lyses. The 1323 survivors included in these analyses were chological domain, three were from the physical aspects surveyed at a median of 6 months after diagnosis (SD = 1 of daily living domain and the remaining two items were month, minimum 4 months, maximum 9 months) and from the sexuality domain. their median age was 63 years (SD = 11 years; minimum 18 years, maximum 80 years). More than half of the par- ticipants (59%) were male, about half were diagnosed Factors associated with ‘moderate to high’ level unmet with early stage disease (52%), the most common diagno- need sis was prostate cancer (26%), almost two-thirds (62%) The individual, health behaviour, disease, treatment, psycho- were in remission at the time of survey completion and logical and social characteristics associated with survivors 72% had not received any active treatment in the last reporting ‘moderate to high’ level unmet needs by domain month. While the study sample reflected the national are shown in Tables 3, 4 and 5. Domains are displayed side- profile [24] for the top eight incident cancers diagnosed by-side for ease of comparison. in 2005 in terms of gender and age, survivors of colorec- tal cancer appeared to be under-represented and haem- Individual atological and head and neck cancers over-represented. Age at diagnosis and current employment status were Participant characteristics have been reported in detail associated with multiple domains of unmet need (see elsewhere [22]. Table 3). The odds of reporting sexuality, and health sys- tem and information needs increased with decreasing Prevalence of supportive care needs age. Compared to those who were retired, survivors who As shown in Table 1, 496 (42%, 95% CI: 39%-45%) survi- were currently not working (on leave, student, un- vors reported ‘no need’ for help with all of the 34 items employed) or doing unpaid work (volunteer, household assessed. A total of 444 (37%; 95% CI: 34%-40%) survi- duties) had about twice the odds of reporting physical vors reported having at least one ‘moderate to high’ level aspects of daily living and sexuality needs as those who unmet supportive care need and of these, 53% (n = 237) were retired. Age was marginally non-significantly asso- had one to four ‘moderate to high’ needs and 47% ciated with psychological need. Married or defacto Boyes et al. BMC Cancer 2012, 12:150 Page 5 of 10 http://www.biomedcentral.com/1471-2407/12/150 Table 1 Prevalence of supportive care needs at six months post-diagnosis by cancer type Total* Prostate Melanoma Breast Blood Colorectal Lung Head & neck (N = 1187) (n = 309) (n = 188) (n = 186) (n = 164) (n = 145) (n = 108) (n = 87) n% n% n% n% n% n% n% n% (95% CI) (95% CI) (95% CI) (95% CI) (95% CI) (95% CI) (95% CI) (95% CI) No needs 496 134 122 56 54 66 29 35 42 (39–45) 43 (37–49) 65 (58–72) 30 (23–37) 33 (26–40) 46 (38–54) 27 (19–35) 40 (30–50) Low needs 247 58 33 47 38 31 14 26 21 (19–23) 19 (15–23) 17 (12–22) 25 (19–31) 23 (17–29) 21 (14–28) 13 (7–19) 30 (20–40) Moderate to high needs 444 117 33 83 72 48 65 26 37 (34–40) 38 (33–43) 17 (12–22) 45 (38–52) 44 (36–52) 33 (25–41) 60 (51–69) 30 (20–40) * includes those with no missing items across all domains. selected ‘no’ need for help to all 34 items. selected ‘low’ level need for help to at least one item, but did not select ‘moderate’ or ‘high’ need to any item. selected ‘moderate’ or ‘high’ level need for help to at least one item. survivors had three times the odds of unmet sexuality needs, while lung, breast and haematological cancer sur- needs compared to those who were single or widowed. vivors had at least two times the odds of unmet physical and daily living needs. Survivors who received chemo- therapy in the last month had higher odds of unmet psy- Health behaviour chological, and physical and daily living needs than those Physical activity was the only health behaviour associated who didn’t receive chemotherapy in the last month. with moderate to high level unmet needs (see Table 3). The odds of reporting unmet psychological, and physical and daily living needs increased with decreasing levels of Psychological physical activity. Coping strategy and mental health treatment were asso- ciated with multiple domains of unmet need (see Table 5). Survivors who engaged in anxious preoccupation coping Disease and treatment had two to six times higher odds of reporting unmet Cancer status, cancer type and having received chemo- needs across all domains compared to survivors who did therapy in the last month were associated with multiple not use this coping strategy. Survivors who used help- domains of unmet need (see Table 4). Compared to sur- less-hopeless coping had about twice the odds of report- vivors in remission, those not in remission (stable, recur- rent, metastatic disease) had about twice the odds of ing unmet psychological, health system and information, unmet health system and information, and patient care and patient care and support needs compared to those and support needs. Compared with survivors of melan- who didn’t use this strategy, while those who used cogni- oma, survivors of all other cancer types except head and tive avoidance coping had higher odds of reporting un- met psychological needs compared to those who didn’t neck had at least four times the odds of unmet sexuality Table 2 Ten most prevalent ‘moderate’ or ‘high’ level unmet supportive care needs Rank SCNS-SF34 item Number (%) moderate or high needs Domain 1 Concerns about the worries of those close to you 192 (15) Psychological 2 Fears about the cancer spreading 185 (14) Psychological 3 Not being able to do the things you used to do 169 (13) Physical/ daily living 4 Uncertainty about the future 168 (13) Psychological 5 Lack of energy/tiredness 157 (12) Physical/ daily living 6 Changes in your sexual relationships 140 (11) Sexuality 7 Changes in sexual feelings 139 (11) Sexuality 8 Work around the home 137 (11) Physical/ daily living 9. Worry that the results of treatment are beyond your control 128 (10) Psychological 10 Feeling down or depressed 120 (9) Psychological Total number of observations for each item ranges from 1292–1302 due to missing values. Boyes et al. BMC Cancer 2012, 12:150 Page 6 of 10 http://www.biomedcentral.com/1471-2407/12/150 Table 3 Individual and health behaviour characteristics associated with moderate to high level unmet needs by domain* Psychological Physical & daily Sexuality Health system Patient care living & information & support p-value p-value p-value p-value p-value Adjusted OR Adjusted OR Adjusted OR Adjusted OR Adjusted OR (95% CI) (95% CI) (95% CI) (95% CI) (95% CI) Individual Sex 0.089 Female 0.56 (0.29-1.1) Male 1.00 Marital status <0.001 Married/ defacto 3.0 (1.6-5.6) Single/ widowed 1.00 Age at diagnosis 0.06 0.002 0.008 49 and younger 1.7 (0.98-2.8) 4.4 (1.8-10.6) 2.9 (1.5-5.5) 50-59 1.1 (0.67-1.8) 4.3 (2.0-9.1) 2.5 (1.3-4.6) 60-69 0.88 (0.55-1.4) 2.7 (1.5-5.2) 2.2 (1.3-3.9) 70 and older 1.00 1.00 1.00 Current employment <0.001 0.005 Paid work 0.78 (0.51-1.2) 0.92 (0.54-1.6) Not working 1.8 (1.2-2.8) 2.0 (1.1-3.4) Retired 1.00 1.00 Health behaviour Physical activity 0.05 <0.001 Sedentary 1.7 (1.1-2.7) 2.5 (1.6-4.0) Insufficient 1.5 (0.99-2.1) 1.8 (1.2-2.7) Sufficient 1.00 1.00 * also adjusted for disease, treatment, psychological and social characteristics as reported in Tables 4 and 5. OR = odds ratio; CI = confidence interval; p-value on the Wald chi-square analysis of effects test. use this strategy. Compared to survivors without a his- higher odds of unmet health system and information needs tory of mental health treatment, those who had been (see Table 5). treated for such problems before their cancer diagnosis had around twice the odds of unmet physical and daily Discussion living, and patient care and support needs, while those This study found that six months after a cancer diagno- who had been treated for such problems since their can- sis, about one-third (37%) of survivors reported one or cer diagnosis had almost three times higher odds of un- more items of moderate or high level unmet need, while met psychological needs. almost two thirds (63%) reported either no or low level unmet needs. The most commonly reported moderate to Social high level unmet needs were from the psychological and Compared to those with some affectionate support, survi- physical and daily living domains. This is consistent with vors who perceived they had low levels of affectionate sup- other recent needs assessments conducted with samples port had lower odds of health system and information, and of cancer survivors at the end of treatment [17], in early higher odds of patient care and support needs. Compared phases of survivorship [15,18] and in long-term survivor- to survivors with some positive social interaction, survivors ship [14,16]. However, previous studies [13,15,17,18] who perceived that they had low levels of positive social found between 43%-60% of survivors reported at least interaction had higher odds of unmet sexuality, and health one moderate or high level unmet need, compared to system and information needs. Survivors who perceived 37% of survivors in this study. Similarly, unlike earlier low levels of emotional/informational support also had studies which found the most prevalent item of moderate Boyes et al. BMC Cancer 2012, 12:150 Page 7 of 10 http://www.biomedcentral.com/1471-2407/12/150 Table 4 Disease and treatment characteristics associated with moderate to high level unmet needs by domain* Psychological Physical Sexuality Health system Patient care & daily living & information & support p-value p-value p-value p-value p-value Adjusted OR Adjusted OR Adjusted OR Adjusted OR Adjusted OR (95% CI) (95% CI) (95% CI) (95% CI) (95% CI) Disease Cancer status <0.001 0.001 Not remission 2.0 (1.4-2.9) 2.2 (1.4-3.5) Remission 1.00 1.00 Cancer type 0.003 <0.001 Breast 2.3 (1.1-4.6) 9.0 (2.5-32.2) Colorectal 2.1 (0.97-4.5) 6.4 (1.7-24.3) Blood 2.2 (1.1-4.5) 4.3 (1.2-15.5) Head neck 1.0 (0.41-2.5) 1.1 (0.21-6.1) Lung 4.1 (2.0-8.7) 5.8 (1.6-21.8) Prostate 1.7 (0.86-3.4) 23.1 (6.7-80.4) Melanoma 1.00 1.00 Treatment Surgery 0.093 Yes 2.1 (0.89-4.8) No/DK 1.00 Chemotherapy 0.005 0.023 Yes 1.8 (1.2-2.8) 1.6 (1.1-2.5) No/DK 1.00 1.00 Radiotherapy 0.05 Yes 1.6 (0.99-2.7) No/DK 1.00 Other 0.062 Yes 2.3 (0.96-5.7) No/DK 1.00 * also adjusted for individual, health behaviour, psychological and social characteristics as reported in Tables 3 and 5. OR = odds ratio; CI = confidence interval; p-value on the Wald chi-square analysis of effects test; DK = don’t know. or high unmet need occurred among 27-40% of recent survivors’ supportive care needs, as measured by the survivors [13,17,18], the most commonly reported item SCNS-SF34, are relatively well met. of unmet need in this study was endorsed by only 15% of Due to the size and composition of the study sample, survivors. we were able to directly compare the prevalence of sup- The prevalence of unmet need reported by survivors portive care needs between seven common cancer types in this study is clearly lower than previously reported, in Australia [26]. This bivariable analysis revealed signifi- despite using the same validated instrument, and clas- cant variation across cancer types, with particularly low sification of unmet need. This may be because earlier levels of unmet need reported by survivors of melanoma, studies of cancer survivors diagnosed with a diversity 65% of whom reported no items of unmet need. This is of cancer sites did not use population-based samples fitting with our anecdotal experience whereby partici- [13,17,18] and are therefore more susceptible to selec- pants who were survivors of melanoma often questioned tion bias. In contrast, we used the two largest state- the legitimacy of their contribution to the study as they based cancer registries in Australia to assemble a perceived themselves to have suffered less than survivors population-based sample of survivors in the very early of other cancer types, and therefore less deserving of at- stages of cancer survivorship. Given that the study tention. Australia has the world’s highest incidence rate sample is generally representative of the source popu- of melanoma; it is typically identified at early stages lation, we are confident in our findings that most when simple treatment such as surgery will achieve a Boyes et al. BMC Cancer 2012, 12:150 Page 8 of 10 http://www.biomedcentral.com/1471-2407/12/150 Table 5 Psychological and social characteristics associated with moderate to high level unmet needs by domain* Psychological Physical Sexuality Health system Patient care & daily living & information & support p-value p-value p-value p-value p-value Adjusted OR Adjusted OR Adjusted OR Adjusted OR Adjusted OR (95% CI) (95% CI) (95% CI) (95% CI) (95% CI) Psychological Anxious preoccupation <0.001 <0.001 <0.001 <0.001 <0.001 Case 5.9 (4.0-8.7) 2.2 (1.5-3.2) 3.4 (2.2-5.3) 3.3 (2.2-5.1) 3.1 (1.8-5.2) No case 1.00 1.00 1.00 1.00 1.00 Helpless hopeless <0.001 0.016 0.002 Case 2.2 (1.5-3.3) 1.7 (1.1-2.7) 2.3 (1.3-3.8) No case 1.00 1.00 1.00 Cognitive avoidance 0.02 0.049 Case 1.5 (1.1-2.1) 1.5 (1.0-2.3) No case 1.00 1.00 Mental health <0.001 0.032 <0.001 help before cancer Yes 2.1 (1.4-3.2) 1.7 (1.0-2.8) 2.5 (1.5-4.2) No 1.00 1.00 1.00 Mental health <0.001 help since cancer Yes 2.9 (1.6-5.2) No 1.00 Social Affectionate support 0.020 0.003 Low 0.47 (0.25-0.89) 2.1 (1.3-3.4) Some 1.00 1.00 Positive 0.05 0.014 0.002 social interaction Low 1.4 (0.99-2.0) 1.7 (1.1-2.5) 2.6 (1.4-4.8) Some 1.00 1.00 1.00 Emotional/ informational 0.04 0.002 Low 1.4 (1.0-2.1) 2.2 (1.3-3.6) Some 1.00 1.00 * also adjusted for individual, health behaviour, disease and treatment characteristics as reported in Tables 3 and 4. OR = odds ratio; CI = confidence interval; p-value on the Wald chi-square analysis of effects test. good prognosis [38]. It is possible that the omission of disease, health behaviour, psychological and social melanoma survivors from the sample composition of factors, cancer type was found to be significantly previous studies [17,18] may have contributed to their associated with moderate to high level unmet phys- higher prevalence of unmet need compared to this study. ical and daily living, and sexuality needs only. In par- In contrast, the highest levels of unmet need were ticular, survivors of lung cancer had the highest odds reported by survivors of lung cancer, with 60% reporting of reporting unmet physical and daily living needs, at least one item of moderate or high level need. Given while survivors of prostate cancer had extremely high the high level of burden associated with lung cancer in odds of reporting unmet sexuality needs. These find- terms of poor prognosis, treatment side effects and de- ings suggest that the type of unmet need experienced clining physical health, this finding is not surprising. by survivors does not routinely differ between cancer Subgroups of survivors with domain-specific and types. Rather, the notion of cancer site- specific un- widespread unmet needs were identified. After met needs appears to apply to only a few explicit adjusting for a comprehensive range of individual, dimensions of unmet need. Boyes et al. BMC Cancer 2012, 12:150 Page 9 of 10 http://www.biomedcentral.com/1471-2407/12/150 Consistent with previous studies, not being in remis- questionnaire into other languages and may have sion was associated with unmet health system and infor- resulted in an underestimate of the prevalence of un- mation, and patient care and support needs; this is not met needs given that language barriers have been surprising given this subgroup of survivors is likely to be associated with poorer access to health care services. receiving intermittent treatment and symptom manage- Our outcome measure, the SCNS-SF34, is a well-vali- ment. While almost three quarters of survivors reported dated tool for assessing multiple dimensions of sup- not receiving any active treatment in the last month, we portive care need and was developed with diverse did not assess if participants had completed all active samples of individuals diagnosed with cancer in terms treatments given the changeable and uncertain nature of of cancer type and time since diagnosis [27]. However, adjuvant treatment regimes. While each treatment was it is possible that the SCNS-SF34 may not fully cap- considered separately, having received chemotherapy in ture the unique needs of cancer survivors in the late the last month was the only treatment associated with treatment to early survivorship phase of care, and higher odds of reporting unmet needs. Interestingly, therefore this study may underestimate the prevalence physical activity was the only health behaviour associated of unmet need reported by survivors at six months with unmet needs, with sedentary survivors reporting post-diagnosis. Since this study commenced, two can- higher odds of unmet psychological, and physical and cer survivor-specific needs assessment tools [41,42] daily living needs. Although 37% of the sample resided in have been developed and should be considered for regional or remote areas, our results did not support the use in future studies. findings from previous studies of an association between rural location and unmet needs. On account of the range Conclusions of study factors examined in this study, a number of About one-third of cancer survivors in the transition from associations were established for the first time. Low late treatment to early survivorship had moderate to high levels of social support and maladaptive coping styles levels of unmet need, particularly in the psychological and were associated with multiple domains of unmet need. daily living domains. Our findings directly inform health Notably, survivors who were identified as a case on anx- care professionals and organisations involved in the ious preoccupation coping had more than twice the odds provision of survivorship careabout theactions,resources of reporting unmet needs across all five domains. While and services most needed by subgroups of survivors. Our causation cannot be inferred, the new associations iden- findings also suggest that coping support interventions may tified in this study are particularly valuable because social have the potential to contribute to the prevention or reduc- support and coping style are potentially amenable to tion of survivors’ unmet needs across all domains. How- intervention. In particular, attention could be directed ever, it is important not to overlook the finding that 63% of towards exploring the contribution that targeted coping survivors in this study reported no or low level unmet interventions focusing on anxiety and helplessness, could needs at six months post-diagnosis and for whom current make towards the prevention of or reduction in survi- care appears to adequately meet their needs. On the basis vors’ unmet needs across a number of domains. that a valuable new perspective about how to prevent or reduce cancer survivors’ unmet needs could be gained from Strengths and limitations those with no unmet needs, future research should seek to While previous needs assessments have also included identify and better understand this subgroup of survivors. a diversity of recent cancer survivors [13,17,18], the population-based sampling method used in this study Competing interests The authors declare that they have no competing interests. is a major strength as it increases the generalisability of the results. In Australia, the notification of cancer Acknowledgements to the cancer registry is a statutory requirement under The research on which this paper is based was conducted as part of the the state and territory Public Health Acts. Indices of Cancer Survival Study led by Allison Boyes and Afaf Girgis. Funding for registry data quality demonstrate that the level of case this study was provided by the National Health & Medical Research Council (ID 252418), Cancer Council NSW, Hunter Medical Research ascertainment is high and the data collected are ac- Institute, Honda Foundation and University of Newcastle. The Victorian curate [39]. However, the overall response rate was Cancer Registry (Cancer Council Victoria) and NSW Central Cancer 41% (1360/3315 eligible individuals) and may raise Registry (NSW Department of Health and Cancer Institute NSW) assisted with case recruitment. Our sincere thanks to the cancer survivors who concerns about response bias. While this response provided the survey data, and Christophe Lecathelinais for statistical rate seems low, it is higher than that achieved by assistance. other studies which also used cancer registries to re- Author details cruit diverse samples of recent survivors [40,41]. Sur- Priority Research Centre for Health Behaviour, University of Newcastle & vivors who were not proficient in English were Hunter Medical Research Institute, Newcastle, Australia. Ingham Institute for excluded due to the prohibitive cost of translating the Applied Medical Research, University of New South Wales, Liverpool, Boyes et al. BMC Cancer 2012, 12:150 Page 10 of 10 http://www.biomedcentral.com/1471-2407/12/150 Australia. Centre for Clinical Epidemiology and Biostatistics, University of 20. Hewitt M, Greenfield S, Stovall E: From cancer patient to cancer survivor: Lost Newcastle, Newcastle, Australia. in transition. Washington DC: The National Academies Press; 2006. 21. Brearley SG, Stamataki Z, Addington-Hall J, Foster C, Hodges L, Jarrett N, Richardson A, Scott I, Sharpe M, Stark D, Siller C, Ziegler L, Amir Z: The Authors’ contributions physical and practical problems experienced by cancer survivors: a rapid AB participated in study conception, design and acquisition of funding; was review and synthesis of the literature. Eur J Oncol Nurs 2011,15:204–212. responsible for implementing the study protocol; performed some of the 22. Boyes AW, Girgis A, D’Este C, Zucca AC: Flourishing or floundering? statistical analysis; interpreted the data and drafted the manuscript. AG Prevalence and correlates of anxiety and depression among a participated in study conception, design and acquisition of funding. CD population-based sample of adult cancer survivors 6 months after participated in the study design and acquisition of funding, and coordinated diagnosis. J Affect Disord 2011, 135:184–192. the statistical analysis. AZ helped to implement the study protocol and 23. Hall AE, Boyes AW, Bowman J, Walsh RA, James, EL, Girgis A: Young adult performed some of the statistical analysis. All authors participated in revising cancer survivors’ psychosocial well-being: a cross-sectional study the manuscript, and read and approved the final version. assessing quality of life, unmet needs and health behaviors. Support Care Cancer, in press. Received: 14 October 2011 Accepted: 18 April 2012 24. Feuerstein M: Defining cancer survivorship. J Cancer Surviv 2007, 1:5–7. Published: 18 April 2012 25. Office of Cancer Survivorship: About cancer survivorship – definitions. [http://dccps.nci.nih.gov/ocs/definitions.html] 26. Australian Institute of Health and Welfare (AIHW) & Australasian Association References of Cancer Registries (AACR): Cancer in Australia: an overview, 2008. Cancer 1. Ferlay J, Shin HR, Bray F, Forman D, Mathers C, Parkin DM: GLOBOCAN series no 46. Canberra: AIHW & AACR; 2008. 2008, Cancer Incidence and Mortality Worldwide: IARC CancerBase No 27. Boyes A, Girgis A, Lecathelinais C: Brief assessment of adult cancer patients’ 10. [http://globocan.iarc.fr] perceived needs: development and validation of the 34-item Supportive 2. Zucca AC, Boyes AW, Linden W, Girgis A: All’s well that ends well? Quality Care Needs Survey (SCNS-SF34). J Eval Clin Pract 2009, 15:602–606. of life and physical symptom clusters in long-term cancer survivors 28. McElduff P, Boyes A, Zucca A, Girgis A: TheSupportiveCareNeeds across cancer types. J Pain Symptom Manage 2012, 43:720–731. Survey: a guide to administration, scoring and analysis.Newcastle:Centre 3. Burton AW, Fanciullo GJ, Beasley RD, Fisch MJ: Chronic pain in the cancer for Health Research & Psycho-Oncology; 2004. survivor: a new frontier. Pain Med 2007, 8:189–198. 29. Snyder CF, Dy SM, Hendricks DE, Brahmer JR, Carducci MA, Wolff AC: Asking 4. 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Clinical Practice Guidelines for the Management of Melanoma in Australia and 13. Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P, Supportive New Zealand. Wellington: Cancer Council Australia and Australian Cancer Care Review Group: The unmet supportive care needs of patients with Network; 2008. cancer. Cancer 2000, 88:226–237. 39. Curado MP, Edwards B, Shin HR, Storm H, Ferlay J, Heanue M, Boyle P (Eds): 14. Hodgkinson K, Butow P, Fuchs A, Hunt GE, Stenlake A, Hobbs KM, Brand A, Cancer Incidence in Five Continents, Vol IX. Lyon: IARC; 2007. Wain G: Long-term survival from gynecologic cancer: Psychosocial 40. Smith T, Stein KD, Mehta CC: The rationale, design, and implementation of the outcomes, supportive care needs and positive outcomes. Gynecol Oncol American Cancer Society’s Studies of Cancer Survivors. Cancer 2007, 109:1–10. 2007, 104:381–389. 41. Campbell SH, Sanson-Fisher RW, Turner D, Hayward L, Wang S, Taylor-Brown 15. Beesley V, Eakin E, Steginga S, Aitken J, Dunn J, Battistutta D: Unmet needs J: Psychometric properties of Cancer Survivors' Unmet Needs Survey. of gynaecological cancer survivors: implications for developing Support Care Cancer 2010, 19:221–230. community support services. Psychooncology 2008, 17:392–400. 42. Hodgkinson K, Butow P, Hunt GE, Pendlebury S, Hobbs KM, Lo SK, Hunt GE, 16. Hodgkinson K, Butow P, Hunt GE, Pendlebury S, Hobbs KM, Wain G: Breast Wain G: The development and evaluation of a measure to assess cancer cancer survivors' supportive care needs 2–10 years after diagnosis. survivors’ unmet supportive care needs: the CaSUN (Cancer Survivors’ Support Care Cancer 2007, 15:515–523. Unmet Needs measure). Psychooncology 2007, 16:796–804. 17. Armes J, Crowe M, Colbourne L, Morgan H, Murrells T, Oakley C, Palmer N, Ream E, Young A, Richardson A: Patients’ supportive care needs beyond doi:10.1186/1471-2407-12-150 the end of cancer treatment: a prospective, longitudinal survey. J Clin Cite this article as: Boyes et al.: Prevalence and correlates of cancer Oncol 2009, 27:6172–6179. survivors’ supportive care needs 6 months after diagnosis: a 18. McDowell ME, Occhipinti SS, Ferguson M, Chambers SK: Predictors of change in population-based cross-sectional study. BMC Cancer 2012 12:150. unmet supportive care needs in cancer. Psychooncology 2010, 19:508–516. 19. Girgis A, Boyes A, Sanson-Fisher R, Burrows S: Perceived needs of women diagnosed with breast cancer: a focus on rural versus urban location. Aust NZ J Public Health 2000, 24:166–173. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png BMC Cancer Springer Journals

Prevalence and correlates of cancer survivors’ supportive care needs 6 months after diagnosis: a population-based cross-sectional study

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Springer Journals
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Copyright © 2012 by Boyes et al.; licensee BioMed Central Ltd.
Subject
Biomedicine; Cancer Research; Oncology; Surgical Oncology; Health Promotion and Disease Prevention; Biomedicine general; Medicine/Public Health, general
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1471-2407
DOI
10.1186/1471-2407-12-150
pmid
22510387
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Abstract

Background: An understanding of the nature and magnitude of the impact of cancer is critical to planning how best to deliver supportive care to the growing population of cancer survivors whose need for care may span many years. This study aimed to describe the prevalence of and factors associated with moderate to high level unmet supportive care needs among adult cancer survivors six months after diagnosis. Methods: A population-based sample of adult cancer survivors diagnosed with one of the eight most incident cancers in Australia was recruited from two state-based cancer registries. Data for 1323 survivors were obtained by self-report questionnaire and linkage with cancer registry data. Unmet needs were assessed by the 34-item Supportive Care Needs Survey (SCNS-SF34). The data were examined using chi-square and multiple logistic regression analyses. Results: A total of 444 (37%) survivors reported at least one ‘moderate to high’ level unmet need and 496 (42%) reported ‘no need’ for help. Moderate to high level unmet needs were most commonly reported in the psychological (25%) and physical aspects of daily living (20%) domains. The five most frequently endorsed items of moderate to high unmet need were concerns about the worries of those close to them (15%), fears about the cancer spreading (14%), not being able to do the things they used to do (13%), uncertainty about the future (13%) and lack of energy/tiredness (12%). Survivors’ psychological characteristics were the strongest indicators of unmet need, particularly caseness for anxious preoccupation coping which was associated (OR = 2.2-5.9) with unmet need for help across all domains. Conclusions: Unmet supportive care needs are prevalent among a subgroup of survivors transitioning from active treatment to survivorship, although lower than previously reported. In addition to coping support, valuable insight about how to prevent or address survivors’ unmet needs could be gained by examining the substantial proportion of survivors who report no unmet needs. Background and support needs, and the extent to which these are met Cancer is increasingly recognised as a chronic illness, with by current services is critical to guiding where to focus the number of people living with a history of the disease limited healthcare resources in order to deliver care that is expected to triple to 75 million people worldwide in 2030 responsive to the needs of the growing population of can- [1]. While most survivors adjust well over time [2], a mi- cer survivors. nority are at risk of adverse physical [3,4], psychological There are a number of different approaches for more [5,6] and social [7,8] effects which may emerge soon after fully understanding survivors’ cancer experiences and diagnosis and treatment, or in the ensuing years. Detailed quantifying their outcomes including assessment of quality knowledge about the issues faced by survivors, their care of life, satisfaction with health care, and needs assessment [9,10]. Needs assessment not only identifies needs and their importance as perceived by the survivor, but also the * Correspondence: allison.boyes@newcastle.edu.au Priority Research Centre for Health Behaviour, University of Newcastle & extent to which they are met [10]. The key strength of this Hunter Medical Research Institute, Newcastle, Australia approach is that it enables resources to be focused on the Full list of author information is available at the end of the article © 2012 Boyes et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Boyes et al. BMC Cancer 2012, 12:150 Page 2 of 10 http://www.biomedcentral.com/1471-2407/12/150 issues that survivors have expressed they want addressed late treatment to early survivorship phase of the cancer in order to achieve optimal wellbeing. continuum. Increasing interest in the application of needs assess- ment to cancer care has resulted in the development of a Participants & procedures number of valid and reliable cancer-specific tools asses- The sample was recruited from new notifications to the sing a comprehensive range of needs [9,11] and a grow- two largest state-based cancer registries in Australia which ing literature describing their administration across a together account for 60% of all new cancer cases diagnosed variety of settings, stages in the cancer journey, and [26]. Eligibility was restricted to those who were (1) diag- populations. A recent systematic review found that while nosed in the previous six months with their first primary the prevalence of unmet need among cancer survivors cancer of one of the top eight incident cancer types in varied from 30% to 50% across studies, it is typically Australia (prostate, colorectal, female breast, lung, melan- highest in the psychological, health information, and oma, non-Hodgkin’s lymphoma, leukaemia, head & neck); physical aspects of daily living domains [12]. While evi- (2) aged between 18 and 80 years and living in the state of dence about the factors that influence survivors’ unmet New South Wales (NSW) or Victoria (VIC) at diagnosis; needs is inconsistent, a number of studies have found (3) considered by their physician to be aware of their diag- that those who are not in remission [13-15], are psycho- nosis, physically and mentally capable of participating in logically distressed [14,16-18] and geographically isolated the study, and sufficiently proficient in English to complete [15,19] are more likely to report unmet needs. However, a questionnaire; and (4) alive. the literature is plagued by a lack of consistency in the The recruitment and survey methodology have been methods used to measure, classify and report unmet described in detail previously [22]. Briefly, eligible potential needs, making it difficult to compare between studies participants whose physician had given active (NSW) or and to generalise findings [12]. passive (VIC) consent for them to be contacted about the The seminal publication, From Cancer Patient to Cancer study received a mailed package from the registries. Eli- Survivor: Lost in Transition [20], focused the attention of gible survivors who agreed to the registries passing on the cancer control community on the survivorship stage of their contact details to the researchers were sent a self- the cancer trajectory with a series of recommendations to administered questionnaire to complete. Non-responders accelerate progress in this area, including the need for were sent a reminder questionnaire three weeks later and large-scale studies using valid and reliable measures with received a reminder phone call after a further three weeks. diverse cancer populations to be conducted as a priority. A three week interval was used to allow adequate time for Furthermore, a recent review [21] identified unmet sup- survivors to receive, respond to and return the mailed portive care needs as one of four main gaps in knowledge questionnaire prior to receiving a reminder. Return of the about the problems faced by adult cancer survivors. To questionnaire to the research team indicated voluntary guide care planning and help inform future health service consent to participate. The Human Research Ethics Com- delivery, the current study aimed to (1) describe the preva- mittees of the University of Newcastle (H-199-1101), Can- lence of adult cancer survivors’ supportive care needs, cer Institute NSW and Cancer Council Victoria approved overall and by cancer type, at six months post-diagnosis; the study. (2) identify the most prevalent items of moderate to high level unmet need and (3) identify the individual, disease, Measures health behaviour, psychological and social factors asso- Data were collected by self-administered questionnaire ciated with survivors reporting moderate to high level un- with additional clinical information obtained from the met psychological, health systems and information, Cancer Registries for each participant. physical and daily living, patient care and support, and sexuality needs. Outcome measure Supportive care needs were measured by the 34-item Methods Supportive Care Needs Survey (SCNS-SF34) which This paper is based on Time 1 (T1) data collected at six assesses cancer-specific perceived needs across five factor months post-diagnosis from survivors participating in analytically derived domains: psychological (10 items), the population-based longitudinal Cancer Survival Study health systems and information (11 items), patient care (CSS). The study protocol and aspects of the study find- and support (5 items), physical and daily living (5 items), ings have been reported in detail elsewhere [22,23]. and sexuality (3 items) [27]. For each item, respondents While the term cancer ‘survivor’ has varied definitions indicate their level of need for help over the last month [24], this study considers ‘survivor’ to encompass anyone as a result of having cancer on a five point Likert scale diagnosed with cancer, from the time of diagnosis to the with the following response options: 1 = no need, not ap- end of life [25]. This paper focuses on survivors in the plicable; 2 = no need, satisfied; 3 = low need; 4 = moderate Boyes et al. BMC Cancer 2012, 12:150 Page 3 of 10 http://www.biomedcentral.com/1471-2407/12/150 need; and 5 = high need. For each domain, survivors were before and since the cancer diagnosis. Coping was categorised as having a ‘moderate to high’ level of need if assessed by the 21-item Mini Mental Adjustment to they selected response options 4 or 5 to at least one item Cancer Scale (Mini-MAC) which measures five cancer- in the domain or ‘no to low’ need if they selected re- specific coping strategies: helplessness-hopelessness, anx- sponse options 1, 2 or 3 to all items in the domain [28]. ious preoccupation, fighting spirit, cognitive avoidance The SCNS-SF34 has high internal consistency with and fatalism [35]. The mini-MAC has demonstrated reli- Cronbach’s alpha of at least 0.86 for each subscale, and is ability with Cronbach alpha coefficients for each subscale moderately correlated with the Hospital Anxiety and De- ranging from 0.62–0.88. Raw scores for each subscale pression Scale, Distress Thermometer and Quality of Life were standardised from 0 to 100 [35] and survivors who Questionnaire-Core 30 (QLQ-C30) [27]. Furthermore, scored in the top 16% of each distribution were classified cancer patients have reported a preference for the as a ‘case’ on that specific coping strategy [36]. SCNS-SF34 over the QLQ-C30, Functional Assessment of Cancer Therapy-General and Kingston Needs Assess- Social ment–Cancer as a strategy for conveying their needs to Social support was assessed by the MOS Social Support health care providers [29]. Survey (MOS − SSS) which measures four domains of functional support: emotional/informational, tangible, af- fectionate, and positive social interaction [37]. Raw sub- Study factors scale scores were standardised from 0 to 100 and Individual survivors who scored in the bottom one-third of each Age at diagnosis and sex were obtained from the cancer distribution were classified as having ‘low’ availability of registry. Current marital status, highest level of education that particular type of social support (Sherbourne, per- completed, health insurance coverage, current employment sonal communication). The survey has high internal situation, geographical location, size of household, and consistency with alpha coefficients exceeding 0.91 for presence of physical co-morbidities were obtained by each subscale and demonstrated validity with the chronic questionnaire. illness population [37]. Disease and treatment Statistical methods Primary cancer type and spread of disease at diagnosis Due to small numbers, data from survivors diagnosed were obtained from the cancer registry, with survivors’ with non-Hodgkin’s lymphoma or leukaemia were com- cancer categorised as ‘early/less progressed’ (in-situ or bined and categorised as ‘haematological’ cancer. The localised; grade 1 or 2; T1 or T2), ‘late/more progressed’ proportion of survivors who reported either ‘no needs’ (invasion of adjacent organs, regional nodes or distant (ie. selected response option 1 or 2 to all 34 items), ‘low metastases; grade 3 or 4; not T1) or ‘not applicable’ needs’ (ie. selected response option 3 to at least one (haematological cancers). Extent of disease at six months item, but did not select response option 4 or 5 to any post-diagnosis, and cancer treatments received in the last items) and ‘moderate to high needs’ (ie. selected re- month were obtained by questionnaire. sponse option 4 or 5 to at least one item) was calculated overall and by cancer type, with 95% confidence inter- Health behaviours vals. The association between cancer type with reporting Seven questionnaire items adapted from existing measures ‘no needs’, ‘low needs’ and ‘moderate to high needs’ was assessed health behaviors: two items assessed smoking be- examined using chi-square analyses. For each domain, havior, with participants classified as ‘current,’ ‘former’ or the proportion of survivors who reported ‘moderate to ‘never smoker’ [30]; two items assessed alcohol consump- high needs’ versus ‘low or no needs’ was calculated with tion [31] and participants who consumed more than two 95% confidence intervals. The proportion of survivors standard drinks on any day were classified as being at who endorsed each SCNS-SF34 item at either a ‘moder- ‘increased lifetime risk of harm’ from alcohol related injury ate’ or ‘high’ level was calculated with 95% confidence or disease [32]; and three items assessed physical activity intervals and the ten most prevalent items and their cor- [33] with participants classified as ‘sufficiently active’ (at responding domain identified. Chi-square analyses exam- least 150 minutes of physical activity per week), ‘insuffi- ined the association between survivors’ individual, ciently active’ (participating in some activity but not enough disease, health behaviour, psychological and social char- in total time) or ‘sedentary’ (no physical activity) [34]. acteristics with ‘moderate to high needs’ versus ‘low or no needs’ for each domain. Multiple logistic regression Psychological analyses were then conducted to examine factors asso- Two questionnaire items assessed treatment for mental ciated with ‘moderate to high needs’ while adjusting for health illness (eg. depression, anxiety, schizophrenia) potential confounders. Variables with a p-value ≤0.2 on Boyes et al. BMC Cancer 2012, 12:150 Page 4 of 10 http://www.biomedcentral.com/1471-2407/12/150 univariate analyses were included in a backward logistic (n = 207) had five or more ‘moderate to high’ needs. regression model for each domain. Variables were There was significant variation across cancer types in the removed from the model if they had a p-value <0.1 on percentage of survivors who reported unmet needs the likelihood ratio test; those with a p-value ≤0.05 were (χ = 91.39; df = 12; p< 0.001). ‘Moderate to high’ level considered statistically significant. unmet needs were most common amongst survivors of lung cancer with more than half (60%; 95% CI: 51%-69%) endorsing at least one item. Conversely, almost two- Sample size thirds (65%; 95% CI: 58%-72%) of melanoma survivors The registries were required to recruit a quota of 1660 reported ‘no need’ for help with all items. eligible survivors who consented to being contacted At the domain level, 318 (25%; 95% CI: 23%-27%) sur- about the study. Based on previous experience [6], we vivors reported unmet psychological needs, 251 (20%; estimated that 80% of survivors would return a com- 95% CI: 18%-22%) reported unmet physical aspects of pleted survey, resulting in a sample size of approximately daily living needs, and 232 (18%; 95% CI: 16%-20%) 1320 at T1. Assuming a prevalence of moderate to high reported unmet health systems and information needs at needs of 20%, a sample of this size would allow the pro- a ‘moderate to high’ level. Only 167 (13%; 95% CI: 11%- portion of survivors with unmet needs to be estimated 15%) and 103 (8%; 95% CI: 7%-9%) survivors respectively with 95% confidence intervals within ± 3%, and provide reported ‘moderate to high’ level unmet need for help 90% power to detect differences of 7% between categor- with sexuality, and patient care and support domains. ies of study factors associated with moderate to high needs at the 5% significance level. Most prevalent ‘moderate to high’ level unmet supportive care needs Results The 10 highest ranked items that survivors reported a Sample ‘moderate to high’ level of need for help with are shown Of the 3877 potential participants assessed for study eli- in Table 2. Overall, individual items were endorsed by gibility, 3315 were deemed eligible and of these, 1691 relatively few (≤15%) survivors. The highest ranked items (51%) consented to being contacted about the study by were concerns about the worries of those close to you the researchers. A total of 1360 eligible survivors (15%), fears about the cancer spreading (14%), not being returned a T1 survey (41% response rate at T1). Thirty able to do the things they used to do (13%), uncertainty seven participants who returned their T1 survey more about the future (13%), and lack of energy/tiredness than 9 months after diagnosis were excluded from ana- (12%). Half of the top 10 needs items were from the psy- lyses. The 1323 survivors included in these analyses were chological domain, three were from the physical aspects surveyed at a median of 6 months after diagnosis (SD = 1 of daily living domain and the remaining two items were month, minimum 4 months, maximum 9 months) and from the sexuality domain. their median age was 63 years (SD = 11 years; minimum 18 years, maximum 80 years). More than half of the par- ticipants (59%) were male, about half were diagnosed Factors associated with ‘moderate to high’ level unmet with early stage disease (52%), the most common diagno- need sis was prostate cancer (26%), almost two-thirds (62%) The individual, health behaviour, disease, treatment, psycho- were in remission at the time of survey completion and logical and social characteristics associated with survivors 72% had not received any active treatment in the last reporting ‘moderate to high’ level unmet needs by domain month. While the study sample reflected the national are shown in Tables 3, 4 and 5. Domains are displayed side- profile [24] for the top eight incident cancers diagnosed by-side for ease of comparison. in 2005 in terms of gender and age, survivors of colorec- tal cancer appeared to be under-represented and haem- Individual atological and head and neck cancers over-represented. Age at diagnosis and current employment status were Participant characteristics have been reported in detail associated with multiple domains of unmet need (see elsewhere [22]. Table 3). The odds of reporting sexuality, and health sys- tem and information needs increased with decreasing Prevalence of supportive care needs age. Compared to those who were retired, survivors who As shown in Table 1, 496 (42%, 95% CI: 39%-45%) survi- were currently not working (on leave, student, un- vors reported ‘no need’ for help with all of the 34 items employed) or doing unpaid work (volunteer, household assessed. A total of 444 (37%; 95% CI: 34%-40%) survi- duties) had about twice the odds of reporting physical vors reported having at least one ‘moderate to high’ level aspects of daily living and sexuality needs as those who unmet supportive care need and of these, 53% (n = 237) were retired. Age was marginally non-significantly asso- had one to four ‘moderate to high’ needs and 47% ciated with psychological need. Married or defacto Boyes et al. BMC Cancer 2012, 12:150 Page 5 of 10 http://www.biomedcentral.com/1471-2407/12/150 Table 1 Prevalence of supportive care needs at six months post-diagnosis by cancer type Total* Prostate Melanoma Breast Blood Colorectal Lung Head & neck (N = 1187) (n = 309) (n = 188) (n = 186) (n = 164) (n = 145) (n = 108) (n = 87) n% n% n% n% n% n% n% n% (95% CI) (95% CI) (95% CI) (95% CI) (95% CI) (95% CI) (95% CI) (95% CI) No needs 496 134 122 56 54 66 29 35 42 (39–45) 43 (37–49) 65 (58–72) 30 (23–37) 33 (26–40) 46 (38–54) 27 (19–35) 40 (30–50) Low needs 247 58 33 47 38 31 14 26 21 (19–23) 19 (15–23) 17 (12–22) 25 (19–31) 23 (17–29) 21 (14–28) 13 (7–19) 30 (20–40) Moderate to high needs 444 117 33 83 72 48 65 26 37 (34–40) 38 (33–43) 17 (12–22) 45 (38–52) 44 (36–52) 33 (25–41) 60 (51–69) 30 (20–40) * includes those with no missing items across all domains. selected ‘no’ need for help to all 34 items. selected ‘low’ level need for help to at least one item, but did not select ‘moderate’ or ‘high’ need to any item. selected ‘moderate’ or ‘high’ level need for help to at least one item. survivors had three times the odds of unmet sexuality needs, while lung, breast and haematological cancer sur- needs compared to those who were single or widowed. vivors had at least two times the odds of unmet physical and daily living needs. Survivors who received chemo- therapy in the last month had higher odds of unmet psy- Health behaviour chological, and physical and daily living needs than those Physical activity was the only health behaviour associated who didn’t receive chemotherapy in the last month. with moderate to high level unmet needs (see Table 3). The odds of reporting unmet psychological, and physical and daily living needs increased with decreasing levels of Psychological physical activity. Coping strategy and mental health treatment were asso- ciated with multiple domains of unmet need (see Table 5). Survivors who engaged in anxious preoccupation coping Disease and treatment had two to six times higher odds of reporting unmet Cancer status, cancer type and having received chemo- needs across all domains compared to survivors who did therapy in the last month were associated with multiple not use this coping strategy. Survivors who used help- domains of unmet need (see Table 4). Compared to sur- less-hopeless coping had about twice the odds of report- vivors in remission, those not in remission (stable, recur- rent, metastatic disease) had about twice the odds of ing unmet psychological, health system and information, unmet health system and information, and patient care and patient care and support needs compared to those and support needs. Compared with survivors of melan- who didn’t use this strategy, while those who used cogni- oma, survivors of all other cancer types except head and tive avoidance coping had higher odds of reporting un- met psychological needs compared to those who didn’t neck had at least four times the odds of unmet sexuality Table 2 Ten most prevalent ‘moderate’ or ‘high’ level unmet supportive care needs Rank SCNS-SF34 item Number (%) moderate or high needs Domain 1 Concerns about the worries of those close to you 192 (15) Psychological 2 Fears about the cancer spreading 185 (14) Psychological 3 Not being able to do the things you used to do 169 (13) Physical/ daily living 4 Uncertainty about the future 168 (13) Psychological 5 Lack of energy/tiredness 157 (12) Physical/ daily living 6 Changes in your sexual relationships 140 (11) Sexuality 7 Changes in sexual feelings 139 (11) Sexuality 8 Work around the home 137 (11) Physical/ daily living 9. Worry that the results of treatment are beyond your control 128 (10) Psychological 10 Feeling down or depressed 120 (9) Psychological Total number of observations for each item ranges from 1292–1302 due to missing values. Boyes et al. BMC Cancer 2012, 12:150 Page 6 of 10 http://www.biomedcentral.com/1471-2407/12/150 Table 3 Individual and health behaviour characteristics associated with moderate to high level unmet needs by domain* Psychological Physical & daily Sexuality Health system Patient care living & information & support p-value p-value p-value p-value p-value Adjusted OR Adjusted OR Adjusted OR Adjusted OR Adjusted OR (95% CI) (95% CI) (95% CI) (95% CI) (95% CI) Individual Sex 0.089 Female 0.56 (0.29-1.1) Male 1.00 Marital status <0.001 Married/ defacto 3.0 (1.6-5.6) Single/ widowed 1.00 Age at diagnosis 0.06 0.002 0.008 49 and younger 1.7 (0.98-2.8) 4.4 (1.8-10.6) 2.9 (1.5-5.5) 50-59 1.1 (0.67-1.8) 4.3 (2.0-9.1) 2.5 (1.3-4.6) 60-69 0.88 (0.55-1.4) 2.7 (1.5-5.2) 2.2 (1.3-3.9) 70 and older 1.00 1.00 1.00 Current employment <0.001 0.005 Paid work 0.78 (0.51-1.2) 0.92 (0.54-1.6) Not working 1.8 (1.2-2.8) 2.0 (1.1-3.4) Retired 1.00 1.00 Health behaviour Physical activity 0.05 <0.001 Sedentary 1.7 (1.1-2.7) 2.5 (1.6-4.0) Insufficient 1.5 (0.99-2.1) 1.8 (1.2-2.7) Sufficient 1.00 1.00 * also adjusted for disease, treatment, psychological and social characteristics as reported in Tables 4 and 5. OR = odds ratio; CI = confidence interval; p-value on the Wald chi-square analysis of effects test. use this strategy. Compared to survivors without a his- higher odds of unmet health system and information needs tory of mental health treatment, those who had been (see Table 5). treated for such problems before their cancer diagnosis had around twice the odds of unmet physical and daily Discussion living, and patient care and support needs, while those This study found that six months after a cancer diagno- who had been treated for such problems since their can- sis, about one-third (37%) of survivors reported one or cer diagnosis had almost three times higher odds of un- more items of moderate or high level unmet need, while met psychological needs. almost two thirds (63%) reported either no or low level unmet needs. The most commonly reported moderate to Social high level unmet needs were from the psychological and Compared to those with some affectionate support, survi- physical and daily living domains. This is consistent with vors who perceived they had low levels of affectionate sup- other recent needs assessments conducted with samples port had lower odds of health system and information, and of cancer survivors at the end of treatment [17], in early higher odds of patient care and support needs. Compared phases of survivorship [15,18] and in long-term survivor- to survivors with some positive social interaction, survivors ship [14,16]. However, previous studies [13,15,17,18] who perceived that they had low levels of positive social found between 43%-60% of survivors reported at least interaction had higher odds of unmet sexuality, and health one moderate or high level unmet need, compared to system and information needs. Survivors who perceived 37% of survivors in this study. Similarly, unlike earlier low levels of emotional/informational support also had studies which found the most prevalent item of moderate Boyes et al. BMC Cancer 2012, 12:150 Page 7 of 10 http://www.biomedcentral.com/1471-2407/12/150 Table 4 Disease and treatment characteristics associated with moderate to high level unmet needs by domain* Psychological Physical Sexuality Health system Patient care & daily living & information & support p-value p-value p-value p-value p-value Adjusted OR Adjusted OR Adjusted OR Adjusted OR Adjusted OR (95% CI) (95% CI) (95% CI) (95% CI) (95% CI) Disease Cancer status <0.001 0.001 Not remission 2.0 (1.4-2.9) 2.2 (1.4-3.5) Remission 1.00 1.00 Cancer type 0.003 <0.001 Breast 2.3 (1.1-4.6) 9.0 (2.5-32.2) Colorectal 2.1 (0.97-4.5) 6.4 (1.7-24.3) Blood 2.2 (1.1-4.5) 4.3 (1.2-15.5) Head neck 1.0 (0.41-2.5) 1.1 (0.21-6.1) Lung 4.1 (2.0-8.7) 5.8 (1.6-21.8) Prostate 1.7 (0.86-3.4) 23.1 (6.7-80.4) Melanoma 1.00 1.00 Treatment Surgery 0.093 Yes 2.1 (0.89-4.8) No/DK 1.00 Chemotherapy 0.005 0.023 Yes 1.8 (1.2-2.8) 1.6 (1.1-2.5) No/DK 1.00 1.00 Radiotherapy 0.05 Yes 1.6 (0.99-2.7) No/DK 1.00 Other 0.062 Yes 2.3 (0.96-5.7) No/DK 1.00 * also adjusted for individual, health behaviour, psychological and social characteristics as reported in Tables 3 and 5. OR = odds ratio; CI = confidence interval; p-value on the Wald chi-square analysis of effects test; DK = don’t know. or high unmet need occurred among 27-40% of recent survivors’ supportive care needs, as measured by the survivors [13,17,18], the most commonly reported item SCNS-SF34, are relatively well met. of unmet need in this study was endorsed by only 15% of Due to the size and composition of the study sample, survivors. we were able to directly compare the prevalence of sup- The prevalence of unmet need reported by survivors portive care needs between seven common cancer types in this study is clearly lower than previously reported, in Australia [26]. This bivariable analysis revealed signifi- despite using the same validated instrument, and clas- cant variation across cancer types, with particularly low sification of unmet need. This may be because earlier levels of unmet need reported by survivors of melanoma, studies of cancer survivors diagnosed with a diversity 65% of whom reported no items of unmet need. This is of cancer sites did not use population-based samples fitting with our anecdotal experience whereby partici- [13,17,18] and are therefore more susceptible to selec- pants who were survivors of melanoma often questioned tion bias. In contrast, we used the two largest state- the legitimacy of their contribution to the study as they based cancer registries in Australia to assemble a perceived themselves to have suffered less than survivors population-based sample of survivors in the very early of other cancer types, and therefore less deserving of at- stages of cancer survivorship. Given that the study tention. Australia has the world’s highest incidence rate sample is generally representative of the source popu- of melanoma; it is typically identified at early stages lation, we are confident in our findings that most when simple treatment such as surgery will achieve a Boyes et al. BMC Cancer 2012, 12:150 Page 8 of 10 http://www.biomedcentral.com/1471-2407/12/150 Table 5 Psychological and social characteristics associated with moderate to high level unmet needs by domain* Psychological Physical Sexuality Health system Patient care & daily living & information & support p-value p-value p-value p-value p-value Adjusted OR Adjusted OR Adjusted OR Adjusted OR Adjusted OR (95% CI) (95% CI) (95% CI) (95% CI) (95% CI) Psychological Anxious preoccupation <0.001 <0.001 <0.001 <0.001 <0.001 Case 5.9 (4.0-8.7) 2.2 (1.5-3.2) 3.4 (2.2-5.3) 3.3 (2.2-5.1) 3.1 (1.8-5.2) No case 1.00 1.00 1.00 1.00 1.00 Helpless hopeless <0.001 0.016 0.002 Case 2.2 (1.5-3.3) 1.7 (1.1-2.7) 2.3 (1.3-3.8) No case 1.00 1.00 1.00 Cognitive avoidance 0.02 0.049 Case 1.5 (1.1-2.1) 1.5 (1.0-2.3) No case 1.00 1.00 Mental health <0.001 0.032 <0.001 help before cancer Yes 2.1 (1.4-3.2) 1.7 (1.0-2.8) 2.5 (1.5-4.2) No 1.00 1.00 1.00 Mental health <0.001 help since cancer Yes 2.9 (1.6-5.2) No 1.00 Social Affectionate support 0.020 0.003 Low 0.47 (0.25-0.89) 2.1 (1.3-3.4) Some 1.00 1.00 Positive 0.05 0.014 0.002 social interaction Low 1.4 (0.99-2.0) 1.7 (1.1-2.5) 2.6 (1.4-4.8) Some 1.00 1.00 1.00 Emotional/ informational 0.04 0.002 Low 1.4 (1.0-2.1) 2.2 (1.3-3.6) Some 1.00 1.00 * also adjusted for individual, health behaviour, disease and treatment characteristics as reported in Tables 3 and 4. OR = odds ratio; CI = confidence interval; p-value on the Wald chi-square analysis of effects test. good prognosis [38]. It is possible that the omission of disease, health behaviour, psychological and social melanoma survivors from the sample composition of factors, cancer type was found to be significantly previous studies [17,18] may have contributed to their associated with moderate to high level unmet phys- higher prevalence of unmet need compared to this study. ical and daily living, and sexuality needs only. In par- In contrast, the highest levels of unmet need were ticular, survivors of lung cancer had the highest odds reported by survivors of lung cancer, with 60% reporting of reporting unmet physical and daily living needs, at least one item of moderate or high level need. Given while survivors of prostate cancer had extremely high the high level of burden associated with lung cancer in odds of reporting unmet sexuality needs. These find- terms of poor prognosis, treatment side effects and de- ings suggest that the type of unmet need experienced clining physical health, this finding is not surprising. by survivors does not routinely differ between cancer Subgroups of survivors with domain-specific and types. Rather, the notion of cancer site- specific un- widespread unmet needs were identified. After met needs appears to apply to only a few explicit adjusting for a comprehensive range of individual, dimensions of unmet need. Boyes et al. BMC Cancer 2012, 12:150 Page 9 of 10 http://www.biomedcentral.com/1471-2407/12/150 Consistent with previous studies, not being in remis- questionnaire into other languages and may have sion was associated with unmet health system and infor- resulted in an underestimate of the prevalence of un- mation, and patient care and support needs; this is not met needs given that language barriers have been surprising given this subgroup of survivors is likely to be associated with poorer access to health care services. receiving intermittent treatment and symptom manage- Our outcome measure, the SCNS-SF34, is a well-vali- ment. While almost three quarters of survivors reported dated tool for assessing multiple dimensions of sup- not receiving any active treatment in the last month, we portive care need and was developed with diverse did not assess if participants had completed all active samples of individuals diagnosed with cancer in terms treatments given the changeable and uncertain nature of of cancer type and time since diagnosis [27]. However, adjuvant treatment regimes. While each treatment was it is possible that the SCNS-SF34 may not fully cap- considered separately, having received chemotherapy in ture the unique needs of cancer survivors in the late the last month was the only treatment associated with treatment to early survivorship phase of care, and higher odds of reporting unmet needs. Interestingly, therefore this study may underestimate the prevalence physical activity was the only health behaviour associated of unmet need reported by survivors at six months with unmet needs, with sedentary survivors reporting post-diagnosis. Since this study commenced, two can- higher odds of unmet psychological, and physical and cer survivor-specific needs assessment tools [41,42] daily living needs. Although 37% of the sample resided in have been developed and should be considered for regional or remote areas, our results did not support the use in future studies. findings from previous studies of an association between rural location and unmet needs. On account of the range Conclusions of study factors examined in this study, a number of About one-third of cancer survivors in the transition from associations were established for the first time. Low late treatment to early survivorship had moderate to high levels of social support and maladaptive coping styles levels of unmet need, particularly in the psychological and were associated with multiple domains of unmet need. daily living domains. Our findings directly inform health Notably, survivors who were identified as a case on anx- care professionals and organisations involved in the ious preoccupation coping had more than twice the odds provision of survivorship careabout theactions,resources of reporting unmet needs across all five domains. While and services most needed by subgroups of survivors. Our causation cannot be inferred, the new associations iden- findings also suggest that coping support interventions may tified in this study are particularly valuable because social have the potential to contribute to the prevention or reduc- support and coping style are potentially amenable to tion of survivors’ unmet needs across all domains. How- intervention. In particular, attention could be directed ever, it is important not to overlook the finding that 63% of towards exploring the contribution that targeted coping survivors in this study reported no or low level unmet interventions focusing on anxiety and helplessness, could needs at six months post-diagnosis and for whom current make towards the prevention of or reduction in survi- care appears to adequately meet their needs. On the basis vors’ unmet needs across a number of domains. that a valuable new perspective about how to prevent or reduce cancer survivors’ unmet needs could be gained from Strengths and limitations those with no unmet needs, future research should seek to While previous needs assessments have also included identify and better understand this subgroup of survivors. a diversity of recent cancer survivors [13,17,18], the population-based sampling method used in this study Competing interests The authors declare that they have no competing interests. is a major strength as it increases the generalisability of the results. In Australia, the notification of cancer Acknowledgements to the cancer registry is a statutory requirement under The research on which this paper is based was conducted as part of the the state and territory Public Health Acts. Indices of Cancer Survival Study led by Allison Boyes and Afaf Girgis. Funding for registry data quality demonstrate that the level of case this study was provided by the National Health & Medical Research Council (ID 252418), Cancer Council NSW, Hunter Medical Research ascertainment is high and the data collected are ac- Institute, Honda Foundation and University of Newcastle. The Victorian curate [39]. However, the overall response rate was Cancer Registry (Cancer Council Victoria) and NSW Central Cancer 41% (1360/3315 eligible individuals) and may raise Registry (NSW Department of Health and Cancer Institute NSW) assisted with case recruitment. Our sincere thanks to the cancer survivors who concerns about response bias. While this response provided the survey data, and Christophe Lecathelinais for statistical rate seems low, it is higher than that achieved by assistance. other studies which also used cancer registries to re- Author details cruit diverse samples of recent survivors [40,41]. Sur- Priority Research Centre for Health Behaviour, University of Newcastle & vivors who were not proficient in English were Hunter Medical Research Institute, Newcastle, Australia. Ingham Institute for excluded due to the prohibitive cost of translating the Applied Medical Research, University of New South Wales, Liverpool, Boyes et al. BMC Cancer 2012, 12:150 Page 10 of 10 http://www.biomedcentral.com/1471-2407/12/150 Australia. Centre for Clinical Epidemiology and Biostatistics, University of 20. Hewitt M, Greenfield S, Stovall E: From cancer patient to cancer survivor: Lost Newcastle, Newcastle, Australia. in transition. Washington DC: The National Academies Press; 2006. 21. 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Published: Apr 18, 2012

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