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Unmet Support Service Needs and Health-Related Quality of Life among Adolescents and Young Adults with Cancer: The AYA HOPE Study

Unmet Support Service Needs and Health-Related Quality of Life among Adolescents and Young Adults... ORIGINAL RESEARCH ARTICLE published: 08 April 2013 doi: 10.3389/fonc.2013.00075 Unmet support service needs and health-related quality of life among adolescents and young adults with cancer: the AYA HOPE study 1 2 1 3 4 5 Ashley Wilder Smith *, Helen M. Parsons , Erin E. Kent , Keith Bellizzi , Brad J. Zebrack , Gretchen Keel , 6 7 8 † Charles F. Lynch , Mara B. Rubenstein ,Theresa H. M. Keegan and AYA HOPE Study Collaborative Group Outcomes Research Branch, Applied Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD, USA Department of Epidemiology and Biostatistics, School of Medicine, The University of Texas Health Science Center, San Antonio, TX, USA Human Development and Family Studies, University of Connecticut, Storrs, CT, USA University of Michigan School of Social Work, Ann Arbor, MI, USA Information Management Services, Rockville, MD, USA Department of Epidemiology, The University of Iowa, Iowa City, IA, USA Children’s Hospital of Michigan, Detroit, MI, USA Cancer Prevention Institute of California, Fremont, CA, USA Edited by: Introduction: Cancer for adolescents and young adults (AYA) differs from younger and Crystal Mackall, National Cancer older patients; AYA face medical challenges while navigating social and developmental Institute, USA transitions. Research suggests that these patients are under or inadequately served by Reviewed by: current support services, which may affect health-related quality of life (HRQOL). Melinda Merchant, National Cancer Institute, USA Methods: We examined unmet service needs and HRQOL in the National Cancer Institute’s David A. Rodeberg, East Carolina Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, University Brody School of Medicine, USA a population-based cohort (nD 484), age 15–39, diagnosed with cancer 6–14 months prior, *Correspondence: in 2007–2009. Unmet service needs were psychosocial, physical, spiritual, and financial Ashley Wilder Smith, Outcomes services where respondents endorsed that they needed, but did not receive, a listed ser- Research Branch, National Cancer vice. Linear regression models tested associations between any or specific unmet service Institute, 6130 Executive Boulevard, needs and HRQOL, adjusting for demographic, medical, and health insurance variables. MSC 7344, Executive Plaza North, Room 4090, Bethesda, MD Results: Over one-third of respondents reported at least one unmet service need.The most 20892-7344, USA. e-mail: smithas@mail.nih.gov common were financial (16%), mental health (15%), and support group (14%) services. Adjusted models showed that having any unmet service need was associated with worse overall HRQOL, fatigue, physical, emotional, social, and school/work functioning, and men- tal health (p’s< 0.0001). Specific unmet services were related to particular outcomes [e.g., needing pain management was associated with worse overall HRQOL, physical and social functioning (p’s< 0.001)]. Needing mental health services had the strongest associations with worse HRQOL outcomes; needing physical/occupational therapy was most consis- tently associated with poorer functioning across domains. Discussion: Unmet service needs in AYAs recently diagnosed with cancer are associated with worse HRQOL. Research should examine developmentally appropriate, relevant prac- tices to improve access to services demonstrated to adversely impact HRQOL, particularly physical therapy and mental health services. Keywords: support service needs, health-related quality of life, adolescent, young adult oncology, cancer California Cancer Registry/Public Health Institute (Sacramento, CA): Rosemary University of Iowa (Iowa City, IA, USA): Charles F. Lynch M.D., Ph.D. (P.I.); Michele Cress, DrPH (P.I.); Gretchen Agha; Mark Cruz M. West, Ph.D.; Lori A. Odle, R.N. Fred Hutchinson Cancer Research Center (Seattle, WA): Stephen M. Schwartz, Ph.D. University of Southern California (Los Angeles, CA, USA): Ann Hamilton, Ph.D (P.I.); Martha Shellenberger; Tiffany Janes (P.I.); Jennifer Zelaya; Mary Lo; Urduja Trinidad Karmanos Cancer Center (Detroit, MI, USA): Ikuko Kato, Ph.D. (P.I.); Ann National Cancer Institute (Bethesda, MD, USA): Linda C. Harlan, BSN, MPH, Ph.D.; Bankowski; Marjorie Stock (Investigator) Ashley Wilder Smith, Ph.D., MPH (Investigator); Jana Eisenstein, Louisiana State University (New Orleans, LA, USA): Xiao-cheng Wu, M.D., MPH MPH; Gretchen Keel, BS, BA. (P.I.); Vivien Chen; Bradley Tompkins Consultants: Arnold Potosky, Ph.D.; Keith Bellizzi, Ph.D.; Karen Albritton, MD, Cancer Prevention Institute of California (Fremont, CA, USA): Theresa Keegan, Michael Link, MD; Brad Zebrack, Ph.D., MSW. Ph.D, M.S. (P.I.); Laura Allen; Zinnia Loya; Karen Hussain www.frontiersin.org April 2013 | Volume 3 | Article 75 | 1 Smith et al. Unmet needs and quality of life INTRODUCTION MATERIALS AND METHODS Advances in the diagnosis and treatment of cancer have increased Details regarding AYA HOPE recruitment and study methods the possibility of survival for many cancer patients. With nearly have been published previously (Harlan et al., 2011; Keegan 69,200 adolescents and young adults (AYA) aged 15–39 diagnosed et al., 2012). Briefly, respondents were diagnosed with a histo- annually with cancer in the United States (National Cancer Insti- logically confirmed non-Hodgkin lymphoma (NHL) (nD 121); tute, 2011), meeting survivorship care needs remains critical and Hodgkin lymphoma (nD 135); germ cell cancer (nD 193); acute understudied. Research on AYAs with cancer suggests that this lymphoblastic leukemia (ALL) (nD 16), or sarcoma (Ewing’s, population faces unique psychosocial and developmental needs osteosarcoma or rhabdomyosarcoma) (nD 19) between July 2007 when handling their healthcare. This is complicated by the fact and August 2009. Participants were age 15–39 years old at diagno- that they encounter multiple social, emotional, and logistical chal- sis, 6–14 months post-diagnosis at study entry, and able to read lenges while simultaneously taking on new roles of responsibility and write in English. Participants were recruited from one of and independence (Albritton and Bleyer, 2003; Fernandez and seven National Cancer Institute (NCI) Surveillance, Epidemiology, Barr, 2006; Zebrack, 2008). Unfortunately, there is also evidence and End Results (SEER) registries: Detroit, Seattle/Puget Sound, that AYAs with cancer are under or inadequately served by existing Los Angeles County, San Francisco/Oakland, Greater California, support services (Zebrack et al., 2009, 2013; Dyson et al., 2012; Iowa, and Louisiana. Study approval was obtained by each of the Hall et al., 2012; Keegan et al., 2012). registries’ and NCI’s Institutional Review Boards. Of the 1,208 Our study team previously found that 56 to 75% of AYA cancer patients identified as eligible, 525 patients responded to the study survivors enrolled in the Adolescent and Young Adult Health Out- (one respondent only consented to release of medical record data comes and Patient Experience (AYA HOPE) study who needed and one survey was lost, leaving 523 surveys), and medical records specific supportive care services including support group, pain were obtained on 490 respondents. There was a 43% response rate management, physical or occupational therapy, mental health ser- for the overall study (Harlan et al., 2011). vices, or financial advice on paying for health care did not receive In the AYA HOPE patient survey, respondents were asked these services (Keegan et al., 2012). Further, AYAs who were not questions about their demographic characteristics; barriers to currently in treatment (80%), reported that their physical health and quality of healthcare; treatment and symptoms; insurance or emotional problems interfered with their social activities (a status, information and service needs, the impact of cancer, measure from the general health subdomain of the SF-12®) or and HRQOL including psychosocial and physical functioning had three or more physical symptoms were more likely to have domains. Please see the following website for the study questions: an unmet service need (Keegan et al., 2012). In addition to a http://outcomes.cancer.gov/surveys/aya/aya_hope_survey.pdf. The gap in support services, AYA cancer survivors have poorer can- survey took approximately 15–20 min to complete. cer outcomes compared with pediatric and older adult patients (Stava et al., 2006), including poor health-related quality of life MEASURES (HRQOL) (Zebrack et al., 2009; Clinton-McHarg et al., 2010; We describe the measures relevant to the current study aims below: Smith et al., in press). Our study team additionally found that Health-related Quality of Life : Two instruments were used AYA cancer survivors exhibited significantly worse HRQOL across to assess physical and psychosocial functioning across the wide mental and physical health scales compared with the general pop- age/developmental range in the AYA HOPE study (Smith et al., in ulation (Smith et al., in press). Survivors who were undergoing press). The PedsQL™ 4.0 was originally developed for use with treatment, reporting current or recent symptoms, or lacking health children and adolescents, with a young adult version designed insurance at any time since diagnosis were more likely to report for individuals up to age 25 (Varni and Limbers, 2009) and worse HRQOL (Smith et al., in press). Though one Australian validated in young adults with cancer (Ewing et al., 2009). It cohort study (Hall et al., 2012) has shown deficits in service and included the following domains: overall health, physical health information needs as well as reduced HRQOL in AYAs with can- summary, psychosocial health summary, emotional functioning, cer, to date no studies have examined associations between service social functioning, and work/school functioning. We also included needs and HRQOL. the PedsQL fatigue module (Varni and Limbers, 2008), given the The current paper uses one of the largest population-based importance of fatigue specifically for cancer patients. Further, as cohorts of AYAs diagnosed with cancer in the United States to the PedsQL has only been validated up to age 25, we used the examine relationships between unmet service needs across a vari- SF-12, version 2 (Ware et al., 2002), to best assess HRQOL out- ety of HRQOL domains including physical, emotional, spiritual, comes in older young adults. The SF-12 has been validated for work/school, and financial outcomes. One of the main goals of the use in adults 18 and older and generates two global scores, using AYA HOPE study was to examine the impact of the cancer expe- weighted subscale scores to compute the physical component sum- rience on health and psychosocial outcomes and to inform the mary (PCS) and mental component summary (MCS) scores (Ware development of future studies that focus on care and outcomes et al., 2009). of AYAs. In the current study, we specifically examined relation- Service Needs : Service needs included in this study were adapted ships between any unmet service need and HRQOL as well as each from questions in a prior study of adult cancer survivors (Arora individual unmet service need and HRQOL. This information will et al., 2007). Respondents were asked to indicate whether they had provide evidence to help understand the impact of unmet service received (before, during, or after cancer treatment) the following needs on important health outcomes in the growing population supportive care services: participating in a support group; seeing a of AYA cancer survivors. pain management expert; getting professional advice to help figure Frontiers in Oncology | Pediatric Oncology April 2013 | Volume 3 | Article 75 | 2 Smith et al. Unmet needs and quality of life out payment for healthcare; seeing a physical or occupational ther- RESULTS apist for rehabilitation; seeing a psychiatrist, psychologist, social Table 1 describes the demographic and clinical characteristics of worker, or mental health worker; talking with a spiritual or reli- the study participants. Approximately half of the respondents gious counselor about cancer; or having a nurse come to their were 29 years of age or younger at diagnosis. The majority of home (Keegan et al., 2012). In addition, participants were asked participants were male, non-Hispanic white, working full time, whether they have needed (at the time of survey completion or and unmarried. Most participants had health insurance, but 14% now) need any of these services. A service need was considered reported lacking insurance at some point since diagnosis. Sixty- unmet if the respondent did not receive the service, but reported five percent of participants were diagnosed with early stage disease needing the service (Keegan et al., 2012). (stage I/II) and 82% were not in treatment at the time of study par- Covariates : Demographic data including age, sex, race/ethnicity, ticipation. Most participants (84%) had at least one symptom in education level, and marital status, as well as health insurance the 4 weeks prior to completing the survey and 28% had a severe (including whether respondents lacked health insurance at any or chronic comorbidity. time since diagnosis), and symptoms were collected from the More than one-third of AYAs reported at least one unmet ser- self-report survey. Disease-related variables were obtained from vice need (nD 172, Tables 2 and 3). The most commonly reported SEER and medical records and included cancer type, AJCC stage, unmet service needs were financial (16%), mental health pro- treatment type (surgery alone, radiation, chemotherapy or com- fessional (15%), and support group (14%) services. Regression bined chemotherapy, and radiation), whether participants were models showed that after adjusting for relevant demographic receiving treatment at the time of the study, and comorbid condi- and medical covariates, having any (one or more) unmet ser- tions. Conditions in the comorbidity index had to be severe and/or vice need was associated with lower HRQOL on all domains chronic (i.e., serious and expected to affect treatment or outcomes except the SF-12 PCS. Significant associations were found on or create significant health burden) and were categorized into the PedsQL total score, all PedsQL subscales: fatigue, physi- condition groups and were summed to create final comorbidity cal functioning, emotional functioning, social functioning and scores as 0, 1, >2 based on a previously published comorbidity school/work functioning, and the SF-12 MCS (all p’s< 0.0001; scale for AYA survivors (Parsons et al., 2012). Based on consulta- Tables 2 and 3). tion with AYA oncology clinical experts, we included symptoms Table 2 presents PedsQL outcomes for individual service needs. common to the cancer types being studied. Participants reported Results for the Total score (overall HRQOL) showed that having whether they experienced the following symptoms in the past a need for social support groups, mental health services, physi- four weeks: nausea/vomiting, frequent/severe stomach pain, diar- cal/occupational therapy, or pain management services was asso- rhea/constipation, pain in joints/bones, weight loss, weight gain, ciated with worse overall HRQOL (all p’s< 0.0001). AYA cancer frequent/severe fevers, hot flashes, tingling/weakness/clumsiness survivors who indicated need of a support group (p < 0.0001), of the hands/feet, frequent/severe headaches, frequent/severe mental health professional (p < 0.0001), or physical/occupational mouth sores that impact eating/drinking, and problems with therapy (p < 0.01) reported more fatigue than those who did memory/attention/concentration. The number of symptoms was not report those needs. Worse physical functioning was asso- summed and to be consistent with our previous studies (Keegan ciated with unmet needs related to participation in a support et al., 2012; Kent et al., in press; Smith et al., in press). Symptom group (pD 0.002) or needs for physical or occupational ther- number was categorized as 0, 1–2, 3–4, or 5C. apy (pD 0.002), or a pain management expert (pD 0.001). Lower scores on emotional functioning were associated with need- STATISTICAL ANALYSIS ing a support group, a mental health professional, a physical To examine associations between unmet service needs and or occupational therapist, or to see a spiritual/religious coun- HRQOL outcomes (PedsQL total, physical, emotional, social and selor (all p’s< 0.0001). Worse social functioning was associated work/school functioning scores, and fatigue scores and SF-12 with needing a support group (pD 0.0001), a mental health physical and MCS scores), we used hierarchical multiple regres- professional (p < 0.0001), a physical or occupational therapist sion models controlling for factors found to be associated with (pD 0.002), or pain management services (pD 0.001). Finally, HRQOL (Smith et al., in press), including age, sex, race/ethnicity, unmet needs associated with worse work/school functioning were education, marital status, cancer type, stage at diagnosis, health associated with needing a support group (p < 0.0001), men- insurance, current treatment status, treatment type, comorbidi- tal health services (p < 0.0001) or physical/occupational therapy ties, and symptoms. We examined models in which respondents (pD 0.009). indicated any, as opposed to no unmet service need, similar to Results for SF-12 outcomes and individual service needs other studies (Girgis et al., 2000; Sanson-Fisher et al., 2000; Kee- (Table 3) indicated that unmet need regarding physi- gan et al., 2012), as well as separate models with individual unmet cal/occupational therapy or pain management services were service needs [service needs were uncorrelated with one another associated with worse overall physical health on the PCS (all r < 0.50)]. Analyses were conducted using SAS version 9.2 (p < 0.01 and p < 0.0001, respectively). On the MCS, our adjusted software (SAS Institute Inc., Cary, NC, USA), and due to multi- models indicated that needing a support group, professional ple comparisons, a was set at 0.01. Because 39 participants had mental health services, or needing to see a spiritual/religious missing responses, the analytic sample used in this analysis was counselor, were associated with worse overall mental health nD 484. (p’s< 0.001). www.frontiersin.org April 2013 | Volume 3 | Article 75 | 3 Smith et al. Unmet needs and quality of life Table 1 | Sample characteristics. Unmet service needs Total None Any p-Value n (%) n (%) n (%) Total 484 312 172 AGE AT SURVEY (YEARS) 15–17 21 (4.3) 18 (5.8) 3 (1.7) pD 0.24 18–24 104 (21.5) 70 (22.4) 34 (19.8) 25–29 114 (23.6) 71 (22.8) 43 (25.0) 30–34 117 (24.2) 71 (22.8) 46 (26.7) 35–41 128 (26.4) 82 (26.3) 46 (26.7) SEX Male 311 (64.3) 207 (66.3) 104 (60.5) pD 0.20 Female 173 (35.7) 105 (33.7) 68 (39.5) RACE/ETHNICITY Hispanic 100 (20.7) 62 (19.9) 38 (22.1) pD 0.24 White 285 (58.9) 193 (61.9) 92 (53.5) Black 43 (8.9) 23 (7.4) 20 (11.6) Other 56 (11.6) 34 (10.9) 22 (12.8) EDUCATION (PRE-DIAGNOSIS) High school or less 130 (26.9) 93 (29.8) 37 (21.5) pD 0.05 Some college 127 (26.2) 72 (23.1) 55 (32.0) College graduate 226 (46.7) 146 (46.8) 80 (46.5) Missing 1 (0.2) 1 (0.3) – EMPLOYMENT STATUS (PRE-DIAGNOSIS) Full time work 303 (62.6) 192 (61.5) 111 (64.5) pD 0.74 Full time school 112 (23.1) 77 (24.7) 35 (20.3) Part time work 17 (3.5) 10 (3.2) 7 (4.1) Part time school 20 (4.1) 14 (4.5) 6 (3.5) Homemaker 15 (3.1) 9 (2.9) 6 (3.5) Unemployed/disabled 16 (3.3) 10 (3.2) 6 (3.5) Other/unknown 1 (0.2) – 1 (0.6) MARITAL STATUS Married 205 (42.4) 132 (42.3) 73 (42.4) pD 0.99 Not married 278 (57.4) 179 (57.4) 99 (57.6) Missing 1 (0.2) 1 (0.3) – LACKING HEALTH INSURANCE (ANYTIME SINCE DIAGNOSIS WITH NO COVERAGE) No 407 (84.1) 274 (87.8) 133 (77.3) pD 0.01 Yes 70 (14.5) 36 (11.5) 34 (19.8) Missing 7 (1.4) 2 (0.6) 5 (2.9) CANCERTYPE Acute lymphoblastic leukemia 16 (3.3) 11 (3.5) 5 (2.9) pD 0.02 Germ cell cancer 193 (39.9) 137 (43.9) 56 (32.6) Hodgkin lymphoma 135 (27.9) 88 (28.2) 47 (27.3) Non-Hodgkin lymphoma 121 (25.0) 63 (20.2) 58 (33.7) Sarcoma 19 (3.9) 13 (4.2) 6 (3.5) CANCER STAGE (AJCC) Stage I 200 (41.3) 141 (45.2) 59 (34.3) pD 0.03 Stage II 117 (24.2) 74 (23.7) 43 (25.0) Stage III 69 (14.3) 33 (10.6) 36 (20.9) Stage IV 59 (12.2) 36 (11.5) 23 (13.4) N/A 21 (4.3) 15 (4.8) 6 (3.5) Unknown 18 (3.7) 13 (4.2) 5 (2.9) (Continued) Frontiers in Oncology | Pediatric Oncology April 2013 | Volume 3 | Article 75 | 4 Smith et al. Unmet needs and quality of life Table 1 | Continued Unmet service needs Total None Any p-Value n (%) n (%) n (%) TREATMENTTYPE Surgery only 59 (12.2) 43 (13.8) 16 (9.3) pD 0.01 Radiation 50 (10.3) 42 (13.5) 8 (4.7) Chemotherapy 227 (46.9) 135 (43.3) 92 (53.5) Radiation and chemotherapy 108 (22.3) 66 (21.2) 42 (24.4) Missing/unknown/no 40 (8.3) 26 (8.3) 14 (8.1) treatment IN CURRENTTREATMENT No 396 (81.8) 258 (82.7) 138 (80.2) pD 0.86 Yes 78 (16.1) 50 (16.0) 28 (16.3) Missing 10 (2.1) 4 (1.3) 6 (3.5) COMORBIDITY Missing 33 (6.8) 19 (6.1) 14 (8.1) pD 0.03 0 315 (65.1) 212 (67.9) 103 (59.9) 1 77 (15.9) 52 (16.7) 25 (14.5) 2C 59 (12.2) 29 (9.3) 30 (17.4) CURRENT/RECENT SYMPTOMS 0 78 (16.1) 64 (20.5) 14 (8.1) pD< 0.0001 1 or 2 166 (34.3) 125 (40.1) 41 (23.8) 3 or 4 108 (22.3) 59 (18.9) 49 (28.5) 5C 132 (27.3) 64 (20.5) 68 (39.5) MONTHS FROM DIAGNOSISTO SURVEY <10 131 (27.1) 77 (24.7) 54 (31.4) pD 0.21 10–11 113 (23.3) 70 (22.4) 43 (25.0) 12–13 122 (25.2) 81 (26.0) 41 (23.8) 14C 117 (24.2) 83 (26.6) 34 (19.8) Missing 1 (0.2) 1 (0.3) – Missing responses not included in statistical analysis. DISCUSSION unmet service needs (Zebrack, 2008; Keegan et al., 2012; Zebrack In our study of recently diagnosed AYA cancer survivors, we found et al., 2013) and identifies a critical need to increase services that having unmet service needs was strongly associated with lower for recent AYA cancer survivors as a means for improving both HRQOL. Furthermore, we identified high levels of unmet ser- quality of life and functioning during a highly transitional period vice needs in this population, with 35% (nD 172) of survivors of life. reporting at least one service need (Keegan et al., 2012). Individ- A prominent finding of our study was that having unmet ual service needs ranged from approximately 15% for financial needs for mental health professional services had the strongest (nD 77) or mental health professional (nD 74) services to 2% associations with outcomes (worse: overall HRQOL, overall men- (nD 10) for nursing services in the home. Several specific ser- tal health, fatigue, emotional functioning, social functioning and vice needs were associated with HRQOL outcomes and even work/school functioning), consistent with a recent review (Kahal- having one unmet service need was associated with decrements ley et al., 2012). Our finding that 15% of AYA survivors have unmet in overall HRQOL, physical, emotional, and social functioning, mental health needs is lower than a study of 215 recently diag- fatigue, and work/school functioning, as well as overall mental nosed AYA cancer patients, where unmet mental health needs health. Specific needs to see a physical or occupational thera- ranged from 13.4% in 14- to 19-year-olds to 38.5% of 30- to pist, a mental health professional, a pain management expert, 39-year-olds (Zebrack et al., 2013), but higher than needs in spiritual/religious counselor, or to participate in a support group adult cancer survivors nationally (11.7%) (Hewitt and Rowland, were all associated with worse HRQOL domains. Needing mental 2002). Individuals indicating a need for support groups reported health services had the strongest associations with worse HRQOL worse HRQOL on the same domains as those having unmet outcomes, while the need for physical or occupational therapy mental health needs, and also on the physical functioning sub- was most consistently associated with poorer functioning across scale. However, individuals endorsing needs for mental health HRQOL domains. Overall, this study extends previous research on and those endorsing support group services differed somewhat, www.frontiersin.org April 2013 | Volume 3 | Article 75 | 5 Smith et al. Unmet needs and quality of life Table 2 | Multiple linear regression models* examining unmet service needs and PedsQL scales. Unmet needs Total score Fatigue 2 2 N D 484 % F R Beta SE p F R Beta SE p Any unmet service need 16.10 0.59 <0.0001 13.48 0.51 <0.0001 No 312 0.64 – – – – – – Yes 172 0.36 9.21 1.42 <0.0001 10.87 1.94 <0.0001 Individual unmet service needs Nurse in home 15.29 0.54 <0.0001 11.75 0.47 <0.0001 No need 474 0.98 – – – – – – Unmet need 10 0.02 0.51 4.67 0.91 3.79 6.29 0.55 Support group 17.20 0.57 <0.0001 12.84 0.49 <0.0001 No need 417 0.86 – – – – – – Unmet need 67 0.14 10.67 1.94 <0.0001 11.83 2.65 <0.0001 Mental health professional 17.53 0.57 <0.0001 12.82 0.49 <0.0001 No need 410 0.85 – – – – – – Unmet need 74 0.15 10.69 1.80 <0.0001 10.94 2.47 <0.0001 Physical/occupational therapist 16.35 0.55 <0.0001 12.26 0.48 <0.0001 No need 440 0.91 – – – – – – Unmet need 44 0.09 9.74 2.39 <0.0001 9.95 3.24 0.002 Pain management expert 16.13 0.55 <0.0001 12.07 0.48 <0.0001 No need 442 0.91 – – – – – – Unmet need 42 0.09 8.78 2.41 <0.001 8.10 3.28 0.01 Spiritual/religious counselor 15.41 0.54 <0.0001 11.95 0.48 <0.0001 No need 453 0.94 – – – – – – Unmet need 31 0.06 3.75 2.76 0.17 7.33 3.71 0.05 Financial advice 15.36 0.54 <0.0001 12.01 0.48 <0.0001 No need 407 0.84 – – – – – – Unmet need 77 0.16 1.93 1.88 0.31 5.62 2.52 0.03 Unmet needs Physical functioning Emotional functioning 2 2 N D 484 % F R Beta SE p F R Beta SE p Any unmet service need 13.68 0.51 <0.0001 7.65 0.37 <0.0001 No 312 0.64 – – – – – – Yes 172 0.36 6.28 1.87 <0.001 12.01 2.01 <0.0001 Individual unmet service needs Nurse in home 13.03 0.50 <0.0001 6.11 0.32 <0.0001 No need 474 0.98 – – – – – – Unmet need 10 0.02 2.63 5.94 0.66 1.76 6.56 0.79 Support group 13.58 0.51 <0.0001 7.29 0.36 <0.0001 No need 417 0.86 – – – – – – Unmet need 67 0.14 7.82 2.53 0.002 14.31 2.74 <0.0001 Mental health professional 13.26 0.50 <0.0001 8.07 0.38 <0.0001 No need 410 0.85 – – – – – – Unmet need 74 0.15 4.77 2.37 0.04 16.87 2.50 <0.0001 Physical/occupational therapist 13.58 0.51 <0.0001 6.59 0.33 <0.0001 No need 440 0.91 – – – – – – Unmet need 44 0.09 9.48 3.06 0.002 11.27 3.37 <0.001 (Continued) Frontiers in Oncology | Pediatric Oncology April 2013 | Volume 3 | Article 75 | 6 Smith et al. Unmet needs and quality of life Table 2 | Continued Unmet needs Physical functioning Emotional functioning 2 2 N D 484 % F R Beta SE p F R Beta SE p Pain management expert 13.63 0.51 <0.0001 6.35 0.32 <0.0001 No need 442 0.91 – – – – – – Unmet need 42 0.09 9.93 3.08 0.001 8.01 3.42 0.02 Spiritual/religious counselor 13.15 0.50 <0.0001 7.00 0.35 <0.0001 No need 453 0.94 – – – – – – Unmet need 31 0.06 5.34 3.50 0.13 17.27 3.79 <0.0001 Financial advice 13.07 0.50 <0.0001 6.29 0.32 <0.0001 No need 407 0.84 – – – – – – Unmet need 77 0.16 2.31 2.39 0.33 5.42 2.63 0.04 Unmet needs Social functioning Work/school functioning 2 2 N D 484 % F R Beta SE p F R Beta SE p Any unmet service need 9.77 0.43 <0.0001 8.09 0.38 <0.0001 No 312 0.64 – – – – – – Yes 172 0.36 8.92 1.76 <0.0001 9.91 1.99 <0.0001 Individual unmet service needs Nurse in home 8.53 0.39 <0.0001 6.99 0.35 <0.0001 No need 474 0.98 – – – – – – Unmet need 10 0.02 0.62 5.67 0.91 2.86 6.43 0.6567 Support group 9.24 0.41 <0.0001 7.80 0.37 <0.0001 No need 417 0.86 – – – – – – Unmet need 67 0.14 9.21 2.40 0.0001 11.61 2.71 <0.0001 Mental health professional 9.58 0.42 <0.0001 8.42 0.39 <0.0001 No need 410 0.85 – – – – – – Unmet need 74 0.15 10.32 2.22 <0.0001 14.09 2.48 <0.0001 Physical/occupational therapist 9.02 0.41 <0.0001 7.29 0.36 <0.0001 No need 440 0.91 – – – – – – Unmet need 44 0.09 9.31 2.92 0.002 8.77 3.32 0.009 Pain management expert 9.18 0.41 <0.0001 7.18 0.35 <0.0001 No need 442 0.91 – – – – – – Unmet need 42 0.09 10.75 2.93 <0.001 7.16 3.35 0.03 Spiritual/religious counselor 8.54 0.39 <0.0001 7.06 0.35 <0.0001 No need 453 0.94 – – – – – – Unmet need 31 0.06 1.48 3.35 0.66 5.03 3.79 0.19 Financial advice 8.53 0.39 <0.0001 7.06 0.35 <0.0001 No need 407 0.84 – – – – – – Unmet need 77 0.16 0.09 2.29 0.97 3.51 2.58 0.17 *Each model adjusted for age, sex, race/ethnicity, education, marital status, lacking health insurance, cancer type, cancer stage, treatment type, current treatment status, comorbidity, and symptoms. Reference group, no need. Significant unmet service needs (p< 0.01) are bolded. as the correlation between these two service needs was modest worse emotional or social functioning, they are also associated (rD 0.47; data not shown).Though not surprising that needing with fatigue and school/work functioning, both of which can have mental health services or support groups are associated with detrimental effects on everyday life activities and adjustment back www.frontiersin.org April 2013 | Volume 3 | Article 75 | 7 Smith et al. Unmet needs and quality of life Table 3 | Multiple linear regression models* examining unmet service needs and SF-12 health-related quality of life summary scores. Unmet needs Physical Component Summary Mental Component Summary 2 2 N D 484 % F R Beta SE p F R Beta SE p Any unmet service need 8.24 0.38 <0.0001 6.11 0.32 <0.0001 No 312 0.64 – – – – – – Yes 172 0.36 0.48 0.87 0.58 5.79 1.05 <0.0001 Individual unmet service needs Nurse in home 8.23 0.38 <0.0001 4.94 0.27 <0.0001 No need 474 0.98 – – – – – – Unmet need 10 0.02 1.13 2.72 0.68 4.09 3.39 0.2284 Support group 8.24 0.38 <0.0001 5.79 0.30 <0.0001 No need 417 0.86 – – – – – – Unmet need 67 0.14 0.55 1.17 0.64 6.76 1.43 <0.0001 Mental health professional 8.29 0.39 <0.0001 7.17 0.35 <0.0001 No need 410 0.85 – – – – – – Unmet need 74 0.15 1.21 1.09 0.2642 9.65 1.28 <0.0001 Physical/occupational therapist 8.57 0.39 <0.0001 5.09 0.28 <0.0001 No need 440 0.91 – – – – – – Unmet need 44 0.09 3.76 1.40 0.007 3.99 1.76 0.02 Pain management expert 9.06 0.41 <0.0001 5.04 0.28 <0.0001 No need 442 0.91 – – – – – – Unmet need 42 0.09 5.85 1.40 <0.0001 3.46 1.77 0.05 Spiritual/religious counselor 8.49 0.39 <0.0001 5.43 0.29 <0.0001 No need 453 0.94 – – – – – – Unmet need 31 0.06 3.77 1.60 0.02 7.30 1.98 <0.001 Financial advice 8.28 0.39 <0.0001 4.99 0.27 <0.0001 No need 407 0.84 – – – – – – Unmet need 77 0.16 1.18 1.09 0.2789 2.22 1.36 0.10 *Each model adjusted for age, sex, race/ethnicity, education, marital status, lacking health insurance, cancer type, cancer stage, treatment type, current treatment status, comorbidity, and symptoms. Reference group, no need. Significant unmet service needs (p< 0.01) are bolded. to normal routines. Studies of pediatric and young adult can- health services for AYA cancer survivors as well as their impact on cer survivors show that cancer and its treatment have a strong HRQOL. negative impact on work/school (Nagarajan et al., 2003; Parsons Another strong finding in the current paper was that having et al., 2012); the current study suggests that having better access to unmet needs for physical/occupational therapy was associated mental health support services, or finding ways to increase AYAs’ with poorer outcomes across all HRQOL domains examined service utilization, has the potential to partially ameliorate this except mental health. Though only 9% of the AYA participants impact. in the current study reported unmet physical/occupational ther- While increasing awareness and promoting the use of mental apy service needs, other studies of adults with cancer have reported health services to AYA cancer survivors may improve HRQOL, the much a higher prevalence of 30–43% (Thorsen et al., 2011; Holm United States is currently experiencing a severe national shortage et al., 2012). Despite a growing appreciation for comprehensive of mental health providers, particularly for adolescent psychia- rehabilitation services for cancer survivors (Alfano et al., 2012), try (Thomas and Holzer, 2006; Masri et al., 2008). Moreover, physical and occupational therapy utilization rates are likely lower until recently, mental illness was a criterion that could be used than optimal among AYAs. Young adult survivors of childhood by insurers to deny coverage under the “pre-existing condition” cancers have been found to have low utilization rates of physical clause (Hyde, 2010). However, under the Affordable Care Act, therapy and chiropractic use (Montgomery et al., 2011). Future mental health services will be covered as part of the essential studies should consider the large impact that physical and occu- benefits package. As a result, future studies should examine how pational therapy can have on a variety of health outcomes in AYA, these policies influence the accessibility and affordability of mental beyond physical functioning. Frontiers in Oncology | Pediatric Oncology April 2013 | Volume 3 | Article 75 | 8 Smith et al. Unmet needs and quality of life Our finding that unmet pain management needs were asso- to improve psychosocial outcomes (Zebrack et al., 2009; Kurtz ciated with worse overall HRQOL, physical and social function- and Abrams, 2010; D’Agostino et al., 2011), and the kinds of psy- ing are consistent with observations in adult populations. Pain chosocial, work/school, and financial support services that would is among the most common cancer symptoms, and a meta- be appropriate to this age group have been identified (Zebrack analysis has shown that 33–70% of adult cancer patients report and Isaacson, 2012). One important way to promote appropri- pain symptoms ranging from treatment-related pain to linger- ate supportive care is to ensure that care providers are making ing pain in survivorship (Van Den Beuken-Van Everdingen et al., necessary referrals (Kahalley et al., 2012) or to specifically train 2007; Valeberg et al., 2008). When pain is unaddressed patients oncology staff to help navigate or provide relevant care (Turner and survivors can experience a negative impact on a range of et al., 2009). physical and psychosocial outcomes, such as diminished range The current study’s findings must be considered within the of motion and mobility, depressive symptoms, ability to focus, context of its limitations. Although this is the largest population- and reduced coping with day to day activities (Institute of Med- based study of AYA cancer survivors to date, and the only study to icine, 2008; Green et al., 2011). While there are estimates that examine associations between support service needs and HRQOL, 80–90% of cancer-related pain can be controlled by medica- the design is cross-sectional, relies on self-report of service use, tion (Stjernsward and Teoh, 1990), barriers limit the ability to and examines a select set of services. Furthermore, we were not identify a need for pain management during cancer treatment able to examine details about any service programs offered to or survivorship. Previous research has identified a range of psy- survivors in the study, and whether unmet services were due to chosocial barriers that may limit help-seeking related to pain in lack of availability, access, or poor communication about avail- AYAs such as a fear of addiction to pain medications and con- able services. Our modest response rate suggests the possibility cern that social activities may be restricted if pain were reported of a biased sample; however, no major differences were found (Ameringer, 2010). To address some of these concerns, several on demographic and other characteristics between those who did studies in pediatric and adolescent cancer patients have sug- or did not enroll in the study (Harlan et al., 2011). Addition- gested that complementary and alternative medicine approaches, ally, we recognize that the age distribution of the current study including acupuncture, meditation, massage, or aromatherapy, (15–39 years at diagnosis) is wide and that the cancer types repre- may be effective in reducing procedural pain and patient dis- sented are diverse, such that there may be either developmental or tress (Landier and Tse, 2010). Indeed, Zebrack et al. (2013) disease-specific differences that we were underpowered to explore reported that 30% of AYAs reported unmet need for comple- in detail. We recognize the importance of exploring issues of mentary and alternative health approaches. However, to fully independence and developmental stages in future research. In address pain in the AYA population, an open dialog between particular, age may not be a precise proxy, as there are many providers and patients should be encouraged to identify the most independent or mature adults in their 20s, and there are many effective approaches to measuring, discussing, and alleviating individuals in their 30s who are living at home or financially sup- cancer-related pain. ported by parents – which should be independently examined in Our study also showed that unmet needs for religious/spiritual future research. However, the intention of the AYA HOPE study counseling was associated with worse overall mental health and was to identify broad areas for future research, and the current emotional functioning. Prior research suggests that spirituality is study helps provide an indication of potential topics for future associated with better well-being among cancer patients (see Visser study. In particular, our study showed important relationships et al., 2010 for a review). It is possible that those experiencing the between specific unmet service needs and physical, emotional, greatest emotional and overall mental health deficits are look- and work/school functioning, highlighting mental health needs, ing for ways to ameliorate the negative impact of their cancer on physical or occupational therapy needs, and need for better pain their emotional and mental health, with spiritual/religious coun- management. seling being one potential avenue. Alternatively, the side effects and In conclusion, the current study suggests that AYAs with can- logistics regarding cancer treatment may have disrupted usual par- cer have unmet supportive care service needs and that these needs ticipation in spiritual or religious services. In either case, there is a are associated with decrements in HRQOL. In-depth studies are need to better provide spiritual counseling to AYA cancer patients necessary to tease apart issues regarding availability and access who need it. to these service needs, and to determine whether they are being Results from this study highlight the need to make devel- offered routinely or there are subsets of individuals not receiving opmentally appropriate interventions available and accessible to appropriate care. Future research should examine developmentally AYAs with cancer. For example, there may be at-risk subgroups by appropriate, relevant practices for improving access to services that developmental stage related to age at diagnosis, financial indepen- have been shown to adversely impact HRQOL, particularly men- dence, employment and insurance status, among other areas. In tal health, physical/occupational therapy, and pain management recent years, AYA-focused clinical programs have developed (Fer- services. rari et al., 2010), and AYA cancer guidelines for clinical practice were released in 2012 from The National Comprehensive Cancer ACKNOWLEDGMENTS Network (NCCN, 2012) that included a focus on physical and Supported by contracts N01-PC-54402, N01-PC-54404, N01-PC- psychosocial issues. Specific recommendations have been made 35136, N01-PC-35139, N01-PC-35142, N01-PC-35143, N01-PC- regarding addressing unmet service needs for AYAs with cancer 35145. www.frontiersin.org April 2013 | Volume 3 | Article 75 | 9 Smith et al. Unmet needs and quality of life REFERENCES chronic pain: examining quality of Landier, W., and Tse, A. M. (2010). and V. Ventafridda (New York: Raven Albritton, K., and Bleyer, W. A. (2003). life in diverse cancer survivors. Can- Use of complementary and alter- Press), 7–12. 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Cancer-related Am. 19, 401–421. cer Pain), eds K. Foley, J. Bonica, A. W. (2009). Psychosocial outcomes Frontiers in Oncology | Pediatric Oncology April 2013 | Volume 3 | Article 75 | 10 Smith et al. Unmet needs and quality of life and service use among young adults young adult cancer patients. Cancer Citation: Smith AW, Parsons HM, Copyright © 2013 Smith, Parsons, with cancer. Semin. Oncol. 36, 119, 201–214. Kent EE, Bellizzi K, Zebrack BJ, Keel Kent, Bellizzi, Zebrack, Keel, Lynch, 468–477. G, Lynch CF, Rubenstein MB, Kee- Rubenstein, Keegan and AYA HOPE Zebrack, B., and Isaacson, S. (2012). Conflict of Interest Statement: The gan THM and AYA HOPE Study Study Collaborative Group. This is an Psychosocial care of adolescent and authors declare that the research was Collaborative Group (2013) Unmet open-access article distributed under young adult patients with cancer conducted in the absence of any com- support service needs and health- the terms of the Creative Com- and survivors. J. Clin. Oncol. 30, mercial or financial relationships that related quality of life among adoles- mons Attribution License, which per- 1221–1226. could be construed as a potential con- cents and young adults with cancer: the mits use, distribution and reproduc- Zebrack, B. J., Block, R., Hayes-Lattin, flict of interest. AYA HOPE study. Front. Oncol. 3:75. tion in other forums, provided the orig- B., Embry, L., Aguilar, C., Meeske, doi:10.3389/fonc.2013.00075 inal authors and source are credited K. A., et al. (2013). Psychosocial ser- Received: 31 December 2012; accepted: 23 This article was submitted to Frontiers in and subject to any copyright notices vice use and unmet need among March 2013; published online: 08 April Pediatric Oncology, a specialty of Fron- concerning any third-party graphics recently diagnosed adolescent and 2013. tiers in Oncology. etc. www.frontiersin.org April 2013 | Volume 3 | Article 75 | 11 http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Frontiers in Oncology Pubmed Central

Unmet Support Service Needs and Health-Related Quality of Life among Adolescents and Young Adults with Cancer: The AYA HOPE Study

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Copyright © 2013 Smith, Parsons, Kent, Bellizzi, Zebrack, Keel, Lynch, Rubenstein, Keegan and AYA HOPE Study Collaborative Group.
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Abstract

ORIGINAL RESEARCH ARTICLE published: 08 April 2013 doi: 10.3389/fonc.2013.00075 Unmet support service needs and health-related quality of life among adolescents and young adults with cancer: the AYA HOPE study 1 2 1 3 4 5 Ashley Wilder Smith *, Helen M. Parsons , Erin E. Kent , Keith Bellizzi , Brad J. Zebrack , Gretchen Keel , 6 7 8 † Charles F. Lynch , Mara B. Rubenstein ,Theresa H. M. Keegan and AYA HOPE Study Collaborative Group Outcomes Research Branch, Applied Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD, USA Department of Epidemiology and Biostatistics, School of Medicine, The University of Texas Health Science Center, San Antonio, TX, USA Human Development and Family Studies, University of Connecticut, Storrs, CT, USA University of Michigan School of Social Work, Ann Arbor, MI, USA Information Management Services, Rockville, MD, USA Department of Epidemiology, The University of Iowa, Iowa City, IA, USA Children’s Hospital of Michigan, Detroit, MI, USA Cancer Prevention Institute of California, Fremont, CA, USA Edited by: Introduction: Cancer for adolescents and young adults (AYA) differs from younger and Crystal Mackall, National Cancer older patients; AYA face medical challenges while navigating social and developmental Institute, USA transitions. Research suggests that these patients are under or inadequately served by Reviewed by: current support services, which may affect health-related quality of life (HRQOL). Melinda Merchant, National Cancer Institute, USA Methods: We examined unmet service needs and HRQOL in the National Cancer Institute’s David A. Rodeberg, East Carolina Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, University Brody School of Medicine, USA a population-based cohort (nD 484), age 15–39, diagnosed with cancer 6–14 months prior, *Correspondence: in 2007–2009. Unmet service needs were psychosocial, physical, spiritual, and financial Ashley Wilder Smith, Outcomes services where respondents endorsed that they needed, but did not receive, a listed ser- Research Branch, National Cancer vice. Linear regression models tested associations between any or specific unmet service Institute, 6130 Executive Boulevard, needs and HRQOL, adjusting for demographic, medical, and health insurance variables. MSC 7344, Executive Plaza North, Room 4090, Bethesda, MD Results: Over one-third of respondents reported at least one unmet service need.The most 20892-7344, USA. e-mail: smithas@mail.nih.gov common were financial (16%), mental health (15%), and support group (14%) services. Adjusted models showed that having any unmet service need was associated with worse overall HRQOL, fatigue, physical, emotional, social, and school/work functioning, and men- tal health (p’s< 0.0001). Specific unmet services were related to particular outcomes [e.g., needing pain management was associated with worse overall HRQOL, physical and social functioning (p’s< 0.001)]. Needing mental health services had the strongest associations with worse HRQOL outcomes; needing physical/occupational therapy was most consis- tently associated with poorer functioning across domains. Discussion: Unmet service needs in AYAs recently diagnosed with cancer are associated with worse HRQOL. Research should examine developmentally appropriate, relevant prac- tices to improve access to services demonstrated to adversely impact HRQOL, particularly physical therapy and mental health services. Keywords: support service needs, health-related quality of life, adolescent, young adult oncology, cancer California Cancer Registry/Public Health Institute (Sacramento, CA): Rosemary University of Iowa (Iowa City, IA, USA): Charles F. Lynch M.D., Ph.D. (P.I.); Michele Cress, DrPH (P.I.); Gretchen Agha; Mark Cruz M. West, Ph.D.; Lori A. Odle, R.N. Fred Hutchinson Cancer Research Center (Seattle, WA): Stephen M. Schwartz, Ph.D. University of Southern California (Los Angeles, CA, USA): Ann Hamilton, Ph.D (P.I.); Martha Shellenberger; Tiffany Janes (P.I.); Jennifer Zelaya; Mary Lo; Urduja Trinidad Karmanos Cancer Center (Detroit, MI, USA): Ikuko Kato, Ph.D. (P.I.); Ann National Cancer Institute (Bethesda, MD, USA): Linda C. Harlan, BSN, MPH, Ph.D.; Bankowski; Marjorie Stock (Investigator) Ashley Wilder Smith, Ph.D., MPH (Investigator); Jana Eisenstein, Louisiana State University (New Orleans, LA, USA): Xiao-cheng Wu, M.D., MPH MPH; Gretchen Keel, BS, BA. (P.I.); Vivien Chen; Bradley Tompkins Consultants: Arnold Potosky, Ph.D.; Keith Bellizzi, Ph.D.; Karen Albritton, MD, Cancer Prevention Institute of California (Fremont, CA, USA): Theresa Keegan, Michael Link, MD; Brad Zebrack, Ph.D., MSW. Ph.D, M.S. (P.I.); Laura Allen; Zinnia Loya; Karen Hussain www.frontiersin.org April 2013 | Volume 3 | Article 75 | 1 Smith et al. Unmet needs and quality of life INTRODUCTION MATERIALS AND METHODS Advances in the diagnosis and treatment of cancer have increased Details regarding AYA HOPE recruitment and study methods the possibility of survival for many cancer patients. With nearly have been published previously (Harlan et al., 2011; Keegan 69,200 adolescents and young adults (AYA) aged 15–39 diagnosed et al., 2012). Briefly, respondents were diagnosed with a histo- annually with cancer in the United States (National Cancer Insti- logically confirmed non-Hodgkin lymphoma (NHL) (nD 121); tute, 2011), meeting survivorship care needs remains critical and Hodgkin lymphoma (nD 135); germ cell cancer (nD 193); acute understudied. Research on AYAs with cancer suggests that this lymphoblastic leukemia (ALL) (nD 16), or sarcoma (Ewing’s, population faces unique psychosocial and developmental needs osteosarcoma or rhabdomyosarcoma) (nD 19) between July 2007 when handling their healthcare. This is complicated by the fact and August 2009. Participants were age 15–39 years old at diagno- that they encounter multiple social, emotional, and logistical chal- sis, 6–14 months post-diagnosis at study entry, and able to read lenges while simultaneously taking on new roles of responsibility and write in English. Participants were recruited from one of and independence (Albritton and Bleyer, 2003; Fernandez and seven National Cancer Institute (NCI) Surveillance, Epidemiology, Barr, 2006; Zebrack, 2008). Unfortunately, there is also evidence and End Results (SEER) registries: Detroit, Seattle/Puget Sound, that AYAs with cancer are under or inadequately served by existing Los Angeles County, San Francisco/Oakland, Greater California, support services (Zebrack et al., 2009, 2013; Dyson et al., 2012; Iowa, and Louisiana. Study approval was obtained by each of the Hall et al., 2012; Keegan et al., 2012). registries’ and NCI’s Institutional Review Boards. Of the 1,208 Our study team previously found that 56 to 75% of AYA cancer patients identified as eligible, 525 patients responded to the study survivors enrolled in the Adolescent and Young Adult Health Out- (one respondent only consented to release of medical record data comes and Patient Experience (AYA HOPE) study who needed and one survey was lost, leaving 523 surveys), and medical records specific supportive care services including support group, pain were obtained on 490 respondents. There was a 43% response rate management, physical or occupational therapy, mental health ser- for the overall study (Harlan et al., 2011). vices, or financial advice on paying for health care did not receive In the AYA HOPE patient survey, respondents were asked these services (Keegan et al., 2012). Further, AYAs who were not questions about their demographic characteristics; barriers to currently in treatment (80%), reported that their physical health and quality of healthcare; treatment and symptoms; insurance or emotional problems interfered with their social activities (a status, information and service needs, the impact of cancer, measure from the general health subdomain of the SF-12®) or and HRQOL including psychosocial and physical functioning had three or more physical symptoms were more likely to have domains. Please see the following website for the study questions: an unmet service need (Keegan et al., 2012). In addition to a http://outcomes.cancer.gov/surveys/aya/aya_hope_survey.pdf. The gap in support services, AYA cancer survivors have poorer can- survey took approximately 15–20 min to complete. cer outcomes compared with pediatric and older adult patients (Stava et al., 2006), including poor health-related quality of life MEASURES (HRQOL) (Zebrack et al., 2009; Clinton-McHarg et al., 2010; We describe the measures relevant to the current study aims below: Smith et al., in press). Our study team additionally found that Health-related Quality of Life : Two instruments were used AYA cancer survivors exhibited significantly worse HRQOL across to assess physical and psychosocial functioning across the wide mental and physical health scales compared with the general pop- age/developmental range in the AYA HOPE study (Smith et al., in ulation (Smith et al., in press). Survivors who were undergoing press). The PedsQL™ 4.0 was originally developed for use with treatment, reporting current or recent symptoms, or lacking health children and adolescents, with a young adult version designed insurance at any time since diagnosis were more likely to report for individuals up to age 25 (Varni and Limbers, 2009) and worse HRQOL (Smith et al., in press). Though one Australian validated in young adults with cancer (Ewing et al., 2009). It cohort study (Hall et al., 2012) has shown deficits in service and included the following domains: overall health, physical health information needs as well as reduced HRQOL in AYAs with can- summary, psychosocial health summary, emotional functioning, cer, to date no studies have examined associations between service social functioning, and work/school functioning. We also included needs and HRQOL. the PedsQL fatigue module (Varni and Limbers, 2008), given the The current paper uses one of the largest population-based importance of fatigue specifically for cancer patients. Further, as cohorts of AYAs diagnosed with cancer in the United States to the PedsQL has only been validated up to age 25, we used the examine relationships between unmet service needs across a vari- SF-12, version 2 (Ware et al., 2002), to best assess HRQOL out- ety of HRQOL domains including physical, emotional, spiritual, comes in older young adults. The SF-12 has been validated for work/school, and financial outcomes. One of the main goals of the use in adults 18 and older and generates two global scores, using AYA HOPE study was to examine the impact of the cancer expe- weighted subscale scores to compute the physical component sum- rience on health and psychosocial outcomes and to inform the mary (PCS) and mental component summary (MCS) scores (Ware development of future studies that focus on care and outcomes et al., 2009). of AYAs. In the current study, we specifically examined relation- Service Needs : Service needs included in this study were adapted ships between any unmet service need and HRQOL as well as each from questions in a prior study of adult cancer survivors (Arora individual unmet service need and HRQOL. This information will et al., 2007). Respondents were asked to indicate whether they had provide evidence to help understand the impact of unmet service received (before, during, or after cancer treatment) the following needs on important health outcomes in the growing population supportive care services: participating in a support group; seeing a of AYA cancer survivors. pain management expert; getting professional advice to help figure Frontiers in Oncology | Pediatric Oncology April 2013 | Volume 3 | Article 75 | 2 Smith et al. Unmet needs and quality of life out payment for healthcare; seeing a physical or occupational ther- RESULTS apist for rehabilitation; seeing a psychiatrist, psychologist, social Table 1 describes the demographic and clinical characteristics of worker, or mental health worker; talking with a spiritual or reli- the study participants. Approximately half of the respondents gious counselor about cancer; or having a nurse come to their were 29 years of age or younger at diagnosis. The majority of home (Keegan et al., 2012). In addition, participants were asked participants were male, non-Hispanic white, working full time, whether they have needed (at the time of survey completion or and unmarried. Most participants had health insurance, but 14% now) need any of these services. A service need was considered reported lacking insurance at some point since diagnosis. Sixty- unmet if the respondent did not receive the service, but reported five percent of participants were diagnosed with early stage disease needing the service (Keegan et al., 2012). (stage I/II) and 82% were not in treatment at the time of study par- Covariates : Demographic data including age, sex, race/ethnicity, ticipation. Most participants (84%) had at least one symptom in education level, and marital status, as well as health insurance the 4 weeks prior to completing the survey and 28% had a severe (including whether respondents lacked health insurance at any or chronic comorbidity. time since diagnosis), and symptoms were collected from the More than one-third of AYAs reported at least one unmet ser- self-report survey. Disease-related variables were obtained from vice need (nD 172, Tables 2 and 3). The most commonly reported SEER and medical records and included cancer type, AJCC stage, unmet service needs were financial (16%), mental health pro- treatment type (surgery alone, radiation, chemotherapy or com- fessional (15%), and support group (14%) services. Regression bined chemotherapy, and radiation), whether participants were models showed that after adjusting for relevant demographic receiving treatment at the time of the study, and comorbid condi- and medical covariates, having any (one or more) unmet ser- tions. Conditions in the comorbidity index had to be severe and/or vice need was associated with lower HRQOL on all domains chronic (i.e., serious and expected to affect treatment or outcomes except the SF-12 PCS. Significant associations were found on or create significant health burden) and were categorized into the PedsQL total score, all PedsQL subscales: fatigue, physi- condition groups and were summed to create final comorbidity cal functioning, emotional functioning, social functioning and scores as 0, 1, >2 based on a previously published comorbidity school/work functioning, and the SF-12 MCS (all p’s< 0.0001; scale for AYA survivors (Parsons et al., 2012). Based on consulta- Tables 2 and 3). tion with AYA oncology clinical experts, we included symptoms Table 2 presents PedsQL outcomes for individual service needs. common to the cancer types being studied. Participants reported Results for the Total score (overall HRQOL) showed that having whether they experienced the following symptoms in the past a need for social support groups, mental health services, physi- four weeks: nausea/vomiting, frequent/severe stomach pain, diar- cal/occupational therapy, or pain management services was asso- rhea/constipation, pain in joints/bones, weight loss, weight gain, ciated with worse overall HRQOL (all p’s< 0.0001). AYA cancer frequent/severe fevers, hot flashes, tingling/weakness/clumsiness survivors who indicated need of a support group (p < 0.0001), of the hands/feet, frequent/severe headaches, frequent/severe mental health professional (p < 0.0001), or physical/occupational mouth sores that impact eating/drinking, and problems with therapy (p < 0.01) reported more fatigue than those who did memory/attention/concentration. The number of symptoms was not report those needs. Worse physical functioning was asso- summed and to be consistent with our previous studies (Keegan ciated with unmet needs related to participation in a support et al., 2012; Kent et al., in press; Smith et al., in press). Symptom group (pD 0.002) or needs for physical or occupational ther- number was categorized as 0, 1–2, 3–4, or 5C. apy (pD 0.002), or a pain management expert (pD 0.001). Lower scores on emotional functioning were associated with need- STATISTICAL ANALYSIS ing a support group, a mental health professional, a physical To examine associations between unmet service needs and or occupational therapist, or to see a spiritual/religious coun- HRQOL outcomes (PedsQL total, physical, emotional, social and selor (all p’s< 0.0001). Worse social functioning was associated work/school functioning scores, and fatigue scores and SF-12 with needing a support group (pD 0.0001), a mental health physical and MCS scores), we used hierarchical multiple regres- professional (p < 0.0001), a physical or occupational therapist sion models controlling for factors found to be associated with (pD 0.002), or pain management services (pD 0.001). Finally, HRQOL (Smith et al., in press), including age, sex, race/ethnicity, unmet needs associated with worse work/school functioning were education, marital status, cancer type, stage at diagnosis, health associated with needing a support group (p < 0.0001), men- insurance, current treatment status, treatment type, comorbidi- tal health services (p < 0.0001) or physical/occupational therapy ties, and symptoms. We examined models in which respondents (pD 0.009). indicated any, as opposed to no unmet service need, similar to Results for SF-12 outcomes and individual service needs other studies (Girgis et al., 2000; Sanson-Fisher et al., 2000; Kee- (Table 3) indicated that unmet need regarding physi- gan et al., 2012), as well as separate models with individual unmet cal/occupational therapy or pain management services were service needs [service needs were uncorrelated with one another associated with worse overall physical health on the PCS (all r < 0.50)]. Analyses were conducted using SAS version 9.2 (p < 0.01 and p < 0.0001, respectively). On the MCS, our adjusted software (SAS Institute Inc., Cary, NC, USA), and due to multi- models indicated that needing a support group, professional ple comparisons, a was set at 0.01. Because 39 participants had mental health services, or needing to see a spiritual/religious missing responses, the analytic sample used in this analysis was counselor, were associated with worse overall mental health nD 484. (p’s< 0.001). www.frontiersin.org April 2013 | Volume 3 | Article 75 | 3 Smith et al. Unmet needs and quality of life Table 1 | Sample characteristics. Unmet service needs Total None Any p-Value n (%) n (%) n (%) Total 484 312 172 AGE AT SURVEY (YEARS) 15–17 21 (4.3) 18 (5.8) 3 (1.7) pD 0.24 18–24 104 (21.5) 70 (22.4) 34 (19.8) 25–29 114 (23.6) 71 (22.8) 43 (25.0) 30–34 117 (24.2) 71 (22.8) 46 (26.7) 35–41 128 (26.4) 82 (26.3) 46 (26.7) SEX Male 311 (64.3) 207 (66.3) 104 (60.5) pD 0.20 Female 173 (35.7) 105 (33.7) 68 (39.5) RACE/ETHNICITY Hispanic 100 (20.7) 62 (19.9) 38 (22.1) pD 0.24 White 285 (58.9) 193 (61.9) 92 (53.5) Black 43 (8.9) 23 (7.4) 20 (11.6) Other 56 (11.6) 34 (10.9) 22 (12.8) EDUCATION (PRE-DIAGNOSIS) High school or less 130 (26.9) 93 (29.8) 37 (21.5) pD 0.05 Some college 127 (26.2) 72 (23.1) 55 (32.0) College graduate 226 (46.7) 146 (46.8) 80 (46.5) Missing 1 (0.2) 1 (0.3) – EMPLOYMENT STATUS (PRE-DIAGNOSIS) Full time work 303 (62.6) 192 (61.5) 111 (64.5) pD 0.74 Full time school 112 (23.1) 77 (24.7) 35 (20.3) Part time work 17 (3.5) 10 (3.2) 7 (4.1) Part time school 20 (4.1) 14 (4.5) 6 (3.5) Homemaker 15 (3.1) 9 (2.9) 6 (3.5) Unemployed/disabled 16 (3.3) 10 (3.2) 6 (3.5) Other/unknown 1 (0.2) – 1 (0.6) MARITAL STATUS Married 205 (42.4) 132 (42.3) 73 (42.4) pD 0.99 Not married 278 (57.4) 179 (57.4) 99 (57.6) Missing 1 (0.2) 1 (0.3) – LACKING HEALTH INSURANCE (ANYTIME SINCE DIAGNOSIS WITH NO COVERAGE) No 407 (84.1) 274 (87.8) 133 (77.3) pD 0.01 Yes 70 (14.5) 36 (11.5) 34 (19.8) Missing 7 (1.4) 2 (0.6) 5 (2.9) CANCERTYPE Acute lymphoblastic leukemia 16 (3.3) 11 (3.5) 5 (2.9) pD 0.02 Germ cell cancer 193 (39.9) 137 (43.9) 56 (32.6) Hodgkin lymphoma 135 (27.9) 88 (28.2) 47 (27.3) Non-Hodgkin lymphoma 121 (25.0) 63 (20.2) 58 (33.7) Sarcoma 19 (3.9) 13 (4.2) 6 (3.5) CANCER STAGE (AJCC) Stage I 200 (41.3) 141 (45.2) 59 (34.3) pD 0.03 Stage II 117 (24.2) 74 (23.7) 43 (25.0) Stage III 69 (14.3) 33 (10.6) 36 (20.9) Stage IV 59 (12.2) 36 (11.5) 23 (13.4) N/A 21 (4.3) 15 (4.8) 6 (3.5) Unknown 18 (3.7) 13 (4.2) 5 (2.9) (Continued) Frontiers in Oncology | Pediatric Oncology April 2013 | Volume 3 | Article 75 | 4 Smith et al. Unmet needs and quality of life Table 1 | Continued Unmet service needs Total None Any p-Value n (%) n (%) n (%) TREATMENTTYPE Surgery only 59 (12.2) 43 (13.8) 16 (9.3) pD 0.01 Radiation 50 (10.3) 42 (13.5) 8 (4.7) Chemotherapy 227 (46.9) 135 (43.3) 92 (53.5) Radiation and chemotherapy 108 (22.3) 66 (21.2) 42 (24.4) Missing/unknown/no 40 (8.3) 26 (8.3) 14 (8.1) treatment IN CURRENTTREATMENT No 396 (81.8) 258 (82.7) 138 (80.2) pD 0.86 Yes 78 (16.1) 50 (16.0) 28 (16.3) Missing 10 (2.1) 4 (1.3) 6 (3.5) COMORBIDITY Missing 33 (6.8) 19 (6.1) 14 (8.1) pD 0.03 0 315 (65.1) 212 (67.9) 103 (59.9) 1 77 (15.9) 52 (16.7) 25 (14.5) 2C 59 (12.2) 29 (9.3) 30 (17.4) CURRENT/RECENT SYMPTOMS 0 78 (16.1) 64 (20.5) 14 (8.1) pD< 0.0001 1 or 2 166 (34.3) 125 (40.1) 41 (23.8) 3 or 4 108 (22.3) 59 (18.9) 49 (28.5) 5C 132 (27.3) 64 (20.5) 68 (39.5) MONTHS FROM DIAGNOSISTO SURVEY <10 131 (27.1) 77 (24.7) 54 (31.4) pD 0.21 10–11 113 (23.3) 70 (22.4) 43 (25.0) 12–13 122 (25.2) 81 (26.0) 41 (23.8) 14C 117 (24.2) 83 (26.6) 34 (19.8) Missing 1 (0.2) 1 (0.3) – Missing responses not included in statistical analysis. DISCUSSION unmet service needs (Zebrack, 2008; Keegan et al., 2012; Zebrack In our study of recently diagnosed AYA cancer survivors, we found et al., 2013) and identifies a critical need to increase services that having unmet service needs was strongly associated with lower for recent AYA cancer survivors as a means for improving both HRQOL. Furthermore, we identified high levels of unmet ser- quality of life and functioning during a highly transitional period vice needs in this population, with 35% (nD 172) of survivors of life. reporting at least one service need (Keegan et al., 2012). Individ- A prominent finding of our study was that having unmet ual service needs ranged from approximately 15% for financial needs for mental health professional services had the strongest (nD 77) or mental health professional (nD 74) services to 2% associations with outcomes (worse: overall HRQOL, overall men- (nD 10) for nursing services in the home. Several specific ser- tal health, fatigue, emotional functioning, social functioning and vice needs were associated with HRQOL outcomes and even work/school functioning), consistent with a recent review (Kahal- having one unmet service need was associated with decrements ley et al., 2012). Our finding that 15% of AYA survivors have unmet in overall HRQOL, physical, emotional, and social functioning, mental health needs is lower than a study of 215 recently diag- fatigue, and work/school functioning, as well as overall mental nosed AYA cancer patients, where unmet mental health needs health. Specific needs to see a physical or occupational thera- ranged from 13.4% in 14- to 19-year-olds to 38.5% of 30- to pist, a mental health professional, a pain management expert, 39-year-olds (Zebrack et al., 2013), but higher than needs in spiritual/religious counselor, or to participate in a support group adult cancer survivors nationally (11.7%) (Hewitt and Rowland, were all associated with worse HRQOL domains. Needing mental 2002). Individuals indicating a need for support groups reported health services had the strongest associations with worse HRQOL worse HRQOL on the same domains as those having unmet outcomes, while the need for physical or occupational therapy mental health needs, and also on the physical functioning sub- was most consistently associated with poorer functioning across scale. However, individuals endorsing needs for mental health HRQOL domains. Overall, this study extends previous research on and those endorsing support group services differed somewhat, www.frontiersin.org April 2013 | Volume 3 | Article 75 | 5 Smith et al. Unmet needs and quality of life Table 2 | Multiple linear regression models* examining unmet service needs and PedsQL scales. Unmet needs Total score Fatigue 2 2 N D 484 % F R Beta SE p F R Beta SE p Any unmet service need 16.10 0.59 <0.0001 13.48 0.51 <0.0001 No 312 0.64 – – – – – – Yes 172 0.36 9.21 1.42 <0.0001 10.87 1.94 <0.0001 Individual unmet service needs Nurse in home 15.29 0.54 <0.0001 11.75 0.47 <0.0001 No need 474 0.98 – – – – – – Unmet need 10 0.02 0.51 4.67 0.91 3.79 6.29 0.55 Support group 17.20 0.57 <0.0001 12.84 0.49 <0.0001 No need 417 0.86 – – – – – – Unmet need 67 0.14 10.67 1.94 <0.0001 11.83 2.65 <0.0001 Mental health professional 17.53 0.57 <0.0001 12.82 0.49 <0.0001 No need 410 0.85 – – – – – – Unmet need 74 0.15 10.69 1.80 <0.0001 10.94 2.47 <0.0001 Physical/occupational therapist 16.35 0.55 <0.0001 12.26 0.48 <0.0001 No need 440 0.91 – – – – – – Unmet need 44 0.09 9.74 2.39 <0.0001 9.95 3.24 0.002 Pain management expert 16.13 0.55 <0.0001 12.07 0.48 <0.0001 No need 442 0.91 – – – – – – Unmet need 42 0.09 8.78 2.41 <0.001 8.10 3.28 0.01 Spiritual/religious counselor 15.41 0.54 <0.0001 11.95 0.48 <0.0001 No need 453 0.94 – – – – – – Unmet need 31 0.06 3.75 2.76 0.17 7.33 3.71 0.05 Financial advice 15.36 0.54 <0.0001 12.01 0.48 <0.0001 No need 407 0.84 – – – – – – Unmet need 77 0.16 1.93 1.88 0.31 5.62 2.52 0.03 Unmet needs Physical functioning Emotional functioning 2 2 N D 484 % F R Beta SE p F R Beta SE p Any unmet service need 13.68 0.51 <0.0001 7.65 0.37 <0.0001 No 312 0.64 – – – – – – Yes 172 0.36 6.28 1.87 <0.001 12.01 2.01 <0.0001 Individual unmet service needs Nurse in home 13.03 0.50 <0.0001 6.11 0.32 <0.0001 No need 474 0.98 – – – – – – Unmet need 10 0.02 2.63 5.94 0.66 1.76 6.56 0.79 Support group 13.58 0.51 <0.0001 7.29 0.36 <0.0001 No need 417 0.86 – – – – – – Unmet need 67 0.14 7.82 2.53 0.002 14.31 2.74 <0.0001 Mental health professional 13.26 0.50 <0.0001 8.07 0.38 <0.0001 No need 410 0.85 – – – – – – Unmet need 74 0.15 4.77 2.37 0.04 16.87 2.50 <0.0001 Physical/occupational therapist 13.58 0.51 <0.0001 6.59 0.33 <0.0001 No need 440 0.91 – – – – – – Unmet need 44 0.09 9.48 3.06 0.002 11.27 3.37 <0.001 (Continued) Frontiers in Oncology | Pediatric Oncology April 2013 | Volume 3 | Article 75 | 6 Smith et al. Unmet needs and quality of life Table 2 | Continued Unmet needs Physical functioning Emotional functioning 2 2 N D 484 % F R Beta SE p F R Beta SE p Pain management expert 13.63 0.51 <0.0001 6.35 0.32 <0.0001 No need 442 0.91 – – – – – – Unmet need 42 0.09 9.93 3.08 0.001 8.01 3.42 0.02 Spiritual/religious counselor 13.15 0.50 <0.0001 7.00 0.35 <0.0001 No need 453 0.94 – – – – – – Unmet need 31 0.06 5.34 3.50 0.13 17.27 3.79 <0.0001 Financial advice 13.07 0.50 <0.0001 6.29 0.32 <0.0001 No need 407 0.84 – – – – – – Unmet need 77 0.16 2.31 2.39 0.33 5.42 2.63 0.04 Unmet needs Social functioning Work/school functioning 2 2 N D 484 % F R Beta SE p F R Beta SE p Any unmet service need 9.77 0.43 <0.0001 8.09 0.38 <0.0001 No 312 0.64 – – – – – – Yes 172 0.36 8.92 1.76 <0.0001 9.91 1.99 <0.0001 Individual unmet service needs Nurse in home 8.53 0.39 <0.0001 6.99 0.35 <0.0001 No need 474 0.98 – – – – – – Unmet need 10 0.02 0.62 5.67 0.91 2.86 6.43 0.6567 Support group 9.24 0.41 <0.0001 7.80 0.37 <0.0001 No need 417 0.86 – – – – – – Unmet need 67 0.14 9.21 2.40 0.0001 11.61 2.71 <0.0001 Mental health professional 9.58 0.42 <0.0001 8.42 0.39 <0.0001 No need 410 0.85 – – – – – – Unmet need 74 0.15 10.32 2.22 <0.0001 14.09 2.48 <0.0001 Physical/occupational therapist 9.02 0.41 <0.0001 7.29 0.36 <0.0001 No need 440 0.91 – – – – – – Unmet need 44 0.09 9.31 2.92 0.002 8.77 3.32 0.009 Pain management expert 9.18 0.41 <0.0001 7.18 0.35 <0.0001 No need 442 0.91 – – – – – – Unmet need 42 0.09 10.75 2.93 <0.001 7.16 3.35 0.03 Spiritual/religious counselor 8.54 0.39 <0.0001 7.06 0.35 <0.0001 No need 453 0.94 – – – – – – Unmet need 31 0.06 1.48 3.35 0.66 5.03 3.79 0.19 Financial advice 8.53 0.39 <0.0001 7.06 0.35 <0.0001 No need 407 0.84 – – – – – – Unmet need 77 0.16 0.09 2.29 0.97 3.51 2.58 0.17 *Each model adjusted for age, sex, race/ethnicity, education, marital status, lacking health insurance, cancer type, cancer stage, treatment type, current treatment status, comorbidity, and symptoms. Reference group, no need. Significant unmet service needs (p< 0.01) are bolded. as the correlation between these two service needs was modest worse emotional or social functioning, they are also associated (rD 0.47; data not shown).Though not surprising that needing with fatigue and school/work functioning, both of which can have mental health services or support groups are associated with detrimental effects on everyday life activities and adjustment back www.frontiersin.org April 2013 | Volume 3 | Article 75 | 7 Smith et al. Unmet needs and quality of life Table 3 | Multiple linear regression models* examining unmet service needs and SF-12 health-related quality of life summary scores. Unmet needs Physical Component Summary Mental Component Summary 2 2 N D 484 % F R Beta SE p F R Beta SE p Any unmet service need 8.24 0.38 <0.0001 6.11 0.32 <0.0001 No 312 0.64 – – – – – – Yes 172 0.36 0.48 0.87 0.58 5.79 1.05 <0.0001 Individual unmet service needs Nurse in home 8.23 0.38 <0.0001 4.94 0.27 <0.0001 No need 474 0.98 – – – – – – Unmet need 10 0.02 1.13 2.72 0.68 4.09 3.39 0.2284 Support group 8.24 0.38 <0.0001 5.79 0.30 <0.0001 No need 417 0.86 – – – – – – Unmet need 67 0.14 0.55 1.17 0.64 6.76 1.43 <0.0001 Mental health professional 8.29 0.39 <0.0001 7.17 0.35 <0.0001 No need 410 0.85 – – – – – – Unmet need 74 0.15 1.21 1.09 0.2642 9.65 1.28 <0.0001 Physical/occupational therapist 8.57 0.39 <0.0001 5.09 0.28 <0.0001 No need 440 0.91 – – – – – – Unmet need 44 0.09 3.76 1.40 0.007 3.99 1.76 0.02 Pain management expert 9.06 0.41 <0.0001 5.04 0.28 <0.0001 No need 442 0.91 – – – – – – Unmet need 42 0.09 5.85 1.40 <0.0001 3.46 1.77 0.05 Spiritual/religious counselor 8.49 0.39 <0.0001 5.43 0.29 <0.0001 No need 453 0.94 – – – – – – Unmet need 31 0.06 3.77 1.60 0.02 7.30 1.98 <0.001 Financial advice 8.28 0.39 <0.0001 4.99 0.27 <0.0001 No need 407 0.84 – – – – – – Unmet need 77 0.16 1.18 1.09 0.2789 2.22 1.36 0.10 *Each model adjusted for age, sex, race/ethnicity, education, marital status, lacking health insurance, cancer type, cancer stage, treatment type, current treatment status, comorbidity, and symptoms. Reference group, no need. Significant unmet service needs (p< 0.01) are bolded. to normal routines. Studies of pediatric and young adult can- health services for AYA cancer survivors as well as their impact on cer survivors show that cancer and its treatment have a strong HRQOL. negative impact on work/school (Nagarajan et al., 2003; Parsons Another strong finding in the current paper was that having et al., 2012); the current study suggests that having better access to unmet needs for physical/occupational therapy was associated mental health support services, or finding ways to increase AYAs’ with poorer outcomes across all HRQOL domains examined service utilization, has the potential to partially ameliorate this except mental health. Though only 9% of the AYA participants impact. in the current study reported unmet physical/occupational ther- While increasing awareness and promoting the use of mental apy service needs, other studies of adults with cancer have reported health services to AYA cancer survivors may improve HRQOL, the much a higher prevalence of 30–43% (Thorsen et al., 2011; Holm United States is currently experiencing a severe national shortage et al., 2012). Despite a growing appreciation for comprehensive of mental health providers, particularly for adolescent psychia- rehabilitation services for cancer survivors (Alfano et al., 2012), try (Thomas and Holzer, 2006; Masri et al., 2008). Moreover, physical and occupational therapy utilization rates are likely lower until recently, mental illness was a criterion that could be used than optimal among AYAs. Young adult survivors of childhood by insurers to deny coverage under the “pre-existing condition” cancers have been found to have low utilization rates of physical clause (Hyde, 2010). However, under the Affordable Care Act, therapy and chiropractic use (Montgomery et al., 2011). Future mental health services will be covered as part of the essential studies should consider the large impact that physical and occu- benefits package. As a result, future studies should examine how pational therapy can have on a variety of health outcomes in AYA, these policies influence the accessibility and affordability of mental beyond physical functioning. Frontiers in Oncology | Pediatric Oncology April 2013 | Volume 3 | Article 75 | 8 Smith et al. Unmet needs and quality of life Our finding that unmet pain management needs were asso- to improve psychosocial outcomes (Zebrack et al., 2009; Kurtz ciated with worse overall HRQOL, physical and social function- and Abrams, 2010; D’Agostino et al., 2011), and the kinds of psy- ing are consistent with observations in adult populations. Pain chosocial, work/school, and financial support services that would is among the most common cancer symptoms, and a meta- be appropriate to this age group have been identified (Zebrack analysis has shown that 33–70% of adult cancer patients report and Isaacson, 2012). One important way to promote appropri- pain symptoms ranging from treatment-related pain to linger- ate supportive care is to ensure that care providers are making ing pain in survivorship (Van Den Beuken-Van Everdingen et al., necessary referrals (Kahalley et al., 2012) or to specifically train 2007; Valeberg et al., 2008). When pain is unaddressed patients oncology staff to help navigate or provide relevant care (Turner and survivors can experience a negative impact on a range of et al., 2009). physical and psychosocial outcomes, such as diminished range The current study’s findings must be considered within the of motion and mobility, depressive symptoms, ability to focus, context of its limitations. Although this is the largest population- and reduced coping with day to day activities (Institute of Med- based study of AYA cancer survivors to date, and the only study to icine, 2008; Green et al., 2011). While there are estimates that examine associations between support service needs and HRQOL, 80–90% of cancer-related pain can be controlled by medica- the design is cross-sectional, relies on self-report of service use, tion (Stjernsward and Teoh, 1990), barriers limit the ability to and examines a select set of services. Furthermore, we were not identify a need for pain management during cancer treatment able to examine details about any service programs offered to or survivorship. Previous research has identified a range of psy- survivors in the study, and whether unmet services were due to chosocial barriers that may limit help-seeking related to pain in lack of availability, access, or poor communication about avail- AYAs such as a fear of addiction to pain medications and con- able services. Our modest response rate suggests the possibility cern that social activities may be restricted if pain were reported of a biased sample; however, no major differences were found (Ameringer, 2010). To address some of these concerns, several on demographic and other characteristics between those who did studies in pediatric and adolescent cancer patients have sug- or did not enroll in the study (Harlan et al., 2011). Addition- gested that complementary and alternative medicine approaches, ally, we recognize that the age distribution of the current study including acupuncture, meditation, massage, or aromatherapy, (15–39 years at diagnosis) is wide and that the cancer types repre- may be effective in reducing procedural pain and patient dis- sented are diverse, such that there may be either developmental or tress (Landier and Tse, 2010). Indeed, Zebrack et al. (2013) disease-specific differences that we were underpowered to explore reported that 30% of AYAs reported unmet need for comple- in detail. We recognize the importance of exploring issues of mentary and alternative health approaches. However, to fully independence and developmental stages in future research. In address pain in the AYA population, an open dialog between particular, age may not be a precise proxy, as there are many providers and patients should be encouraged to identify the most independent or mature adults in their 20s, and there are many effective approaches to measuring, discussing, and alleviating individuals in their 30s who are living at home or financially sup- cancer-related pain. ported by parents – which should be independently examined in Our study also showed that unmet needs for religious/spiritual future research. However, the intention of the AYA HOPE study counseling was associated with worse overall mental health and was to identify broad areas for future research, and the current emotional functioning. Prior research suggests that spirituality is study helps provide an indication of potential topics for future associated with better well-being among cancer patients (see Visser study. In particular, our study showed important relationships et al., 2010 for a review). It is possible that those experiencing the between specific unmet service needs and physical, emotional, greatest emotional and overall mental health deficits are look- and work/school functioning, highlighting mental health needs, ing for ways to ameliorate the negative impact of their cancer on physical or occupational therapy needs, and need for better pain their emotional and mental health, with spiritual/religious coun- management. seling being one potential avenue. Alternatively, the side effects and In conclusion, the current study suggests that AYAs with can- logistics regarding cancer treatment may have disrupted usual par- cer have unmet supportive care service needs and that these needs ticipation in spiritual or religious services. In either case, there is a are associated with decrements in HRQOL. In-depth studies are need to better provide spiritual counseling to AYA cancer patients necessary to tease apart issues regarding availability and access who need it. to these service needs, and to determine whether they are being Results from this study highlight the need to make devel- offered routinely or there are subsets of individuals not receiving opmentally appropriate interventions available and accessible to appropriate care. Future research should examine developmentally AYAs with cancer. For example, there may be at-risk subgroups by appropriate, relevant practices for improving access to services that developmental stage related to age at diagnosis, financial indepen- have been shown to adversely impact HRQOL, particularly men- dence, employment and insurance status, among other areas. In tal health, physical/occupational therapy, and pain management recent years, AYA-focused clinical programs have developed (Fer- services. rari et al., 2010), and AYA cancer guidelines for clinical practice were released in 2012 from The National Comprehensive Cancer ACKNOWLEDGMENTS Network (NCCN, 2012) that included a focus on physical and Supported by contracts N01-PC-54402, N01-PC-54404, N01-PC- psychosocial issues. Specific recommendations have been made 35136, N01-PC-35139, N01-PC-35142, N01-PC-35143, N01-PC- regarding addressing unmet service needs for AYAs with cancer 35145. www.frontiersin.org April 2013 | Volume 3 | Article 75 | 9 Smith et al. Unmet needs and quality of life REFERENCES chronic pain: examining quality of Landier, W., and Tse, A. M. (2010). and V. Ventafridda (New York: Raven Albritton, K., and Bleyer, W. A. (2003). life in diverse cancer survivors. Can- Use of complementary and alter- Press), 7–12. 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Cancer-related Am. 19, 401–421. cer Pain), eds K. Foley, J. Bonica, A. W. (2009). Psychosocial outcomes Frontiers in Oncology | Pediatric Oncology April 2013 | Volume 3 | Article 75 | 10 Smith et al. Unmet needs and quality of life and service use among young adults young adult cancer patients. Cancer Citation: Smith AW, Parsons HM, Copyright © 2013 Smith, Parsons, with cancer. Semin. Oncol. 36, 119, 201–214. Kent EE, Bellizzi K, Zebrack BJ, Keel Kent, Bellizzi, Zebrack, Keel, Lynch, 468–477. G, Lynch CF, Rubenstein MB, Kee- Rubenstein, Keegan and AYA HOPE Zebrack, B., and Isaacson, S. (2012). Conflict of Interest Statement: The gan THM and AYA HOPE Study Study Collaborative Group. This is an Psychosocial care of adolescent and authors declare that the research was Collaborative Group (2013) Unmet open-access article distributed under young adult patients with cancer conducted in the absence of any com- support service needs and health- the terms of the Creative Com- and survivors. J. Clin. Oncol. 30, mercial or financial relationships that related quality of life among adoles- mons Attribution License, which per- 1221–1226. could be construed as a potential con- cents and young adults with cancer: the mits use, distribution and reproduc- Zebrack, B. J., Block, R., Hayes-Lattin, flict of interest. AYA HOPE study. Front. Oncol. 3:75. tion in other forums, provided the orig- B., Embry, L., Aguilar, C., Meeske, doi:10.3389/fonc.2013.00075 inal authors and source are credited K. A., et al. (2013). Psychosocial ser- Received: 31 December 2012; accepted: 23 This article was submitted to Frontiers in and subject to any copyright notices vice use and unmet need among March 2013; published online: 08 April Pediatric Oncology, a specialty of Fron- concerning any third-party graphics recently diagnosed adolescent and 2013. tiers in Oncology. etc. www.frontiersin.org April 2013 | Volume 3 | Article 75 | 11

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