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Published in: Journal of Cancer Survivorship 6/2017

01-12-2017

Patterns of unmet needs in adolescent and young adult (AYA) cancer survivors: in their own words

Authors: Alex W. K. Wong, Ting-ting Chang, Katrina Christopher, Stephen C. L. Lau, Lynda K. Beaupin, Brad Love, Kim L. Lipsey, Michael Feuerstein

Published in: Journal of Cancer Survivorship | Issue 6/2017

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Abstract

Purpose

Categorization of the needs of AYA cancer survivors is primarily based on quantitative analyses of epidemiological and observational research. The present study classified the phenomenological experiences of AYA survivors based on their own language.

Methods

A systematic approach for selecting qualitative studies of unmet needs in AYA cancer survivors was used. Following selection based on quality, survivor statements were entered verbatim and thematic analysis was conducted using NVivo qualitative research software.

Results

A total of 1993 AYA cancer survivors (post-treatment) were included in 58 studies (78% individual interviews). Mean age was 27.6 with an average of 8.6 years post-primary treatment. The organizational framework reported in this study was based on a heterogeneous group of cancer types. Thirteen themes including symptoms, function, reproductive health, emotional well-being, health management, health care system, social interaction, romantic relationships, cancer disclosure, normalcy, career development and employment, and school and fiscal concerns were identified. Forty-eight subthemes were also identified covering such areas as fertility, integrative health services, advice for cancer disclosure, family interaction, and insurance challenges.

Conclusion

Direct analysis of text identified many common unmet needs similarly reported in the quantitative literature. The phenomenological data also provided a breakdown of unmet needs into subthemes or elements of unmet needs.

Implications for Cancer Survivors

This information can help form the basis for a personalized, valid, and reliable evaluation tool of the range of unmet needs in AYA survivors.
Literature
1.
go back to reference Barr RD, Ferrari A, Ries L, Whelan J, Bleyer WA. Cancer in adolescents and young adults: a narrative review of the current status and a view of the future. JAMA Pediatr. 2016;170(5):495–501.CrossRefPubMed Barr RD, Ferrari A, Ries L, Whelan J, Bleyer WA. Cancer in adolescents and young adults: a narrative review of the current status and a view of the future. JAMA Pediatr. 2016;170(5):495–501.CrossRefPubMed
2.
go back to reference Qu N, Zhang L, Lu ZW, Ji QH, Yang SW, Wei WJ, et al. Predictive factors for recurrence of differentiated thyroid cancer in patients under 21 years of age and a meta-analysis of the current literature. Tumor Biol. 2016;37(6):7797–808.CrossRef Qu N, Zhang L, Lu ZW, Ji QH, Yang SW, Wei WJ, et al. Predictive factors for recurrence of differentiated thyroid cancer in patients under 21 years of age and a meta-analysis of the current literature. Tumor Biol. 2016;37(6):7797–808.CrossRef
4.
go back to reference Raghav K, Mhadgut H, McQuade JL, Lei X, Ross A, Matamoros A, et al. Cancer of unknown primary in adolescents and young adults: Clinicopathological features, prognostic factors and survival outcomes. PLoS One. 2016;11(5):e0154985.CrossRefPubMedPubMedCentral Raghav K, Mhadgut H, McQuade JL, Lei X, Ross A, Matamoros A, et al. Cancer of unknown primary in adolescents and young adults: Clinicopathological features, prognostic factors and survival outcomes. PLoS One. 2016;11(5):e0154985.CrossRefPubMedPubMedCentral
5.
go back to reference Rey-Casserly C, Meadows ME. Developmental perspectives on optimizing educational and vocational outcomes in child and adult survivors of cancer. Developmental Disabilities Research Reviews. 2008;14(3):243–50.CrossRefPubMed Rey-Casserly C, Meadows ME. Developmental perspectives on optimizing educational and vocational outcomes in child and adult survivors of cancer. Developmental Disabilities Research Reviews. 2008;14(3):243–50.CrossRefPubMed
6.
go back to reference Dieluweit U, Debatin KM, Grabow D, Kaatsch P, Peter R, Seitz D, et al. Social outcomes of long-term survivors of adolescent cancer. Psycho-Oncology. 2010;19(12):1277–84.CrossRefPubMed Dieluweit U, Debatin KM, Grabow D, Kaatsch P, Peter R, Seitz D, et al. Social outcomes of long-term survivors of adolescent cancer. Psycho-Oncology. 2010;19(12):1277–84.CrossRefPubMed
7.
go back to reference Lara J, Brunson A, Keegan TH, Malogolowkin M, Pan CX, Yap S, et al. Determinants of survival in adolescents and young adults with urothelial bladder cancer: results from the California cancer registry. J Urol. 2016;196(5):1378–82.CrossRefPubMedPubMedCentral Lara J, Brunson A, Keegan TH, Malogolowkin M, Pan CX, Yap S, et al. Determinants of survival in adolescents and young adults with urothelial bladder cancer: results from the California cancer registry. J Urol. 2016;196(5):1378–82.CrossRefPubMedPubMedCentral
8.
go back to reference Abrahão R, Keogh RH, Lichtensztajn DY, Marcos-Gragera R, Medeiros BC, Coleman MP, et al. Predictors of early death and survival among children, adolescents and young adults with acute myeloid leukemia in California, 1988-2011: a population-based study. Blood. 2015;126(23):1323. Abrahão R, Keogh RH, Lichtensztajn DY, Marcos-Gragera R, Medeiros BC, Coleman MP, et al. Predictors of early death and survival among children, adolescents and young adults with acute myeloid leukemia in California, 1988-2011: a population-based study. Blood. 2015;126(23):1323.
9.
go back to reference Adolescent & Young Adult Oncology Progress Review Group. Closing the gap: research and care imperatives for adolescents and young adults with cancer (NIH publication no. 06–6067). Bethesda: Department of Health and Human Services, National Institutes of Health, National Cancer Institute, and the LIVESTRONG Young Adult Alliance; 2006. Adolescent & Young Adult Oncology Progress Review Group. Closing the gap: research and care imperatives for adolescents and young adults with cancer (NIH publication no. 06–6067). Bethesda: Department of Health and Human Services, National Institutes of Health, National Cancer Institute, and the LIVESTRONG Young Adult Alliance; 2006.
10.
go back to reference Keegan TH, Ries LA, Barr RD, Geiger AM, Dahlke DV, Pollock BH, et al. Comparison of cancer survival trends in the United States of adolescents and young adults with those in children and older adults. Cancer. 2016;122(7):1009–16.CrossRefPubMed Keegan TH, Ries LA, Barr RD, Geiger AM, Dahlke DV, Pollock BH, et al. Comparison of cancer survival trends in the United States of adolescents and young adults with those in children and older adults. Cancer. 2016;122(7):1009–16.CrossRefPubMed
11.
go back to reference Hudson MM, Mertens AC, Yasui Y, Hobbie W, Chen H, Gurney JG, et al. Health status of adult long-term survivors of childhood cancer: a report from the childhood cancer survivor study. JAMA. 2003;290(12):1583–92.CrossRefPubMed Hudson MM, Mertens AC, Yasui Y, Hobbie W, Chen H, Gurney JG, et al. Health status of adult long-term survivors of childhood cancer: a report from the childhood cancer survivor study. JAMA. 2003;290(12):1583–92.CrossRefPubMed
12.
go back to reference Albritton K, Bleyer W. The management of cancer in the older adolescent. Eur J Cancer. 2003;39(18):2584.CrossRefPubMed Albritton K, Bleyer W. The management of cancer in the older adolescent. Eur J Cancer. 2003;39(18):2584.CrossRefPubMed
13.
go back to reference Arnett JJ. Emerging adulthood: a theory of development from the late teens through the twenties. Am Psychol. 2000;55(5):469.CrossRefPubMed Arnett JJ. Emerging adulthood: a theory of development from the late teens through the twenties. Am Psychol. 2000;55(5):469.CrossRefPubMed
14.
go back to reference Dyson GJ, Thompson K, Palmer S, Thomas DM, Schofield P. The relationship between unmet needs and distress amongst young people with cancer. Support Care Cancer. 2012;20(1):75–85.CrossRefPubMed Dyson GJ, Thompson K, Palmer S, Thomas DM, Schofield P. The relationship between unmet needs and distress amongst young people with cancer. Support Care Cancer. 2012;20(1):75–85.CrossRefPubMed
15.
go back to reference Zebrack B, Hamilton R, Smith AW. Psychosocial outcomes and service use among young adults with cancer. Semin Oncol. 2009;36(5):468–77.CrossRefPubMed Zebrack B, Hamilton R, Smith AW. Psychosocial outcomes and service use among young adults with cancer. Semin Oncol. 2009;36(5):468–77.CrossRefPubMed
16.
17.
go back to reference Thompson K, Palmer S, Dyson G. Adolescents & young adults: issues in transition from active therapy into follow-up care. Eur J Oncol Nurs. 2009;13(3):207–12.CrossRefPubMed Thompson K, Palmer S, Dyson G. Adolescents & young adults: issues in transition from active therapy into follow-up care. Eur J Oncol Nurs. 2009;13(3):207–12.CrossRefPubMed
18.
go back to reference Keegan TH, Lichtensztajn DY, Kato I, Kent EE, Wu XC, West MM, et al. Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study. J Cancer Surviv. 2012;6(3):239–50.CrossRefPubMedPubMedCentral Keegan TH, Lichtensztajn DY, Kato I, Kent EE, Wu XC, West MM, et al. Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study. J Cancer Surviv. 2012;6(3):239–50.CrossRefPubMedPubMedCentral
19.
go back to reference Miedema B, Easley J, Robinson L. Do current cancer follow-up care practices meet the needs of young adult cancer survivors in Canada? A qualitative inquiry. Curr Oncol. 2013;20(1):14.CrossRefPubMedPubMedCentral Miedema B, Easley J, Robinson L. Do current cancer follow-up care practices meet the needs of young adult cancer survivors in Canada? A qualitative inquiry. Curr Oncol. 2013;20(1):14.CrossRefPubMedPubMedCentral
20.
go back to reference Kim B, White K, Patterson P. Understanding the experiences of adolescents and young adults with cancer: a meta-synthesis. Eur J Oncol Nurs. 2016;24:39–53.CrossRefPubMed Kim B, White K, Patterson P. Understanding the experiences of adolescents and young adults with cancer: a meta-synthesis. Eur J Oncol Nurs. 2016;24:39–53.CrossRefPubMed
21.
go back to reference Palmer S, Mitchell A, Thompson K, Sexton M. Unmet needs among adolescent cancer patients: a pilot study. Palliative & supportive care. 2007;5(02):127–34.CrossRef Palmer S, Mitchell A, Thompson K, Sexton M. Unmet needs among adolescent cancer patients: a pilot study. Palliative & supportive care. 2007;5(02):127–34.CrossRef
22.
go back to reference Rabin C, Simpson N, Morrow K, Pinto B. Behavioral and psychosocial program needs of young adult cancer survivors. Qual Health Res. 2011;21(6):796–806.CrossRefPubMed Rabin C, Simpson N, Morrow K, Pinto B. Behavioral and psychosocial program needs of young adult cancer survivors. Qual Health Res. 2011;21(6):796–806.CrossRefPubMed
23.
go back to reference Palmer S, Patterson P, Thompson K. A national approach to improving adolescent and young adult (AYA) oncology psychosocial care: the development of AYA-specific psychosocial assessment and care tools. Palliative & supportive care. 2014;12(3):183–8. doi:10.1017/s1478951512001083.CrossRef Palmer S, Patterson P, Thompson K. A national approach to improving adolescent and young adult (AYA) oncology psychosocial care: the development of AYA-specific psychosocial assessment and care tools. Palliative & supportive care. 2014;12(3):183–8. doi:10.​1017/​s147895151200108​3.CrossRef
24.
go back to reference Clinton-McHarg T, Carey M, Sanson-Fisher R, Shakeshaft A, Rainbird K. Measuring the psychosocial health of adolescent and young adult (AYA) cancer survivors: a critical review. Health Qual Life Outcomes. 2010;8(1):25.CrossRefPubMedPubMedCentral Clinton-McHarg T, Carey M, Sanson-Fisher R, Shakeshaft A, Rainbird K. Measuring the psychosocial health of adolescent and young adult (AYA) cancer survivors: a critical review. Health Qual Life Outcomes. 2010;8(1):25.CrossRefPubMedPubMedCentral
25.
go back to reference Starks H, Trinidad SB. Choose your method: a comparison of phenomenology, discourse analysis, and grounded theory. Qual Health Res. 2007;17(10):1372–80.CrossRefPubMed Starks H, Trinidad SB. Choose your method: a comparison of phenomenology, discourse analysis, and grounded theory. Qual Health Res. 2007;17(10):1372–80.CrossRefPubMed
26.
go back to reference Moher D, Liberati A, Tetzlaff J, Altman DG, Group P. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS med. Moher D, Liberati A, Tetzlaff J, Altman DG, Group P. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS med.
27.
go back to reference Mays N, Pope C. Assessing quality in qualitative research. BMJ. 2000;320:50–2. Mays N, Pope C. Assessing quality in qualitative research. BMJ. 2000;320:50–2.
28.
go back to reference Dixon-Woods M, Sutton A, Shaw R, Miller T, Smith J, Young B, et al. Appraising qualitative research for inclusion in systematic reviews: a quantitative and qualitative comparison of three methods. Journal of Health Services Research & Policy. 2007;12(1):42–7. Dixon-Woods M, Sutton A, Shaw R, Miller T, Smith J, Young B, et al. Appraising qualitative research for inclusion in systematic reviews: a quantitative and qualitative comparison of three methods. Journal of Health Services Research & Policy. 2007;12(1):42–7.
29.
go back to reference Singh J. Critical appraisal skills programme. J Pharmacol Pharmacother. 2013;4(1):76. Singh J. Critical appraisal skills programme. J Pharmacol Pharmacother. 2013;4(1):76.
30.
go back to reference Mackinnon A. A spreadsheet for the calculation of comprehensive statistics for the assessment of diagnostic tests and inter-rater agreement. Comput Biol Med. 2000;30(3):127–34. Mackinnon A. A spreadsheet for the calculation of comprehensive statistics for the assessment of diagnostic tests and inter-rater agreement. Comput Biol Med. 2000;30(3):127–34.
31.
go back to reference Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol. 2008;8:45. Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol. 2008;8:45.
33.
go back to reference Barnett ME, Shuk EM, Conway FP, Ford JS. Cancer-related disclosure among adolescent and young adult cancer survivors: A qualitative study. J Adolesc Young Adult Oncol. 2014;3(3):123–9. Barnett ME, Shuk EM, Conway FP, Ford JS. Cancer-related disclosure among adolescent and young adult cancer survivors: A qualitative study. J Adolesc Young Adult Oncol. 2014;3(3):123–9.
34.
go back to reference Beckwitt AE. Childhood Cancer Camps: Their Role in Adults Surviving Childhood Cancers Lives. J Pediatr Oncol Nurs. 2014;31(1):34–40. Beckwitt AE. Childhood Cancer Camps: Their Role in Adults Surviving Childhood Cancers Lives. J Pediatr Oncol Nurs. 2014;31(1):34–40.
35.
go back to reference Bober SL, Park ER, Schmookler T, Medeiros Nancarrow C, Diller L. Perceptions of breast cancer risk and cancer screening: a qualitative study of young, female Hodgkin's disease survivors. J Cancer Educ. 2007;22(1):42–6. Bober SL, Park ER, Schmookler T, Medeiros Nancarrow C, Diller L. Perceptions of breast cancer risk and cancer screening: a qualitative study of young, female Hodgkin's disease survivors. J Cancer Educ. 2007;22(1):42–6.
36.
go back to reference Boydell KM, Stasiulis E, Greenberg M, Greenberg C, Spiegler B. I'll show them: the social construction of (in)competence in survivors of childhood brain tumors. J Pediatr Oncol Nurs. 2008;25(3):164–74. Boydell KM, Stasiulis E, Greenberg M, Greenberg C, Spiegler B. I'll show them: the social construction of (in)competence in survivors of childhood brain tumors. J Pediatr Oncol Nurs. 2008;25(3):164–74.
37.
go back to reference Braun M, Hasson-Ohayon I, Perry S, Kaufman B, Uziely B. Motivation for giving birth after breast cancer. Psychooncology. 2005;14(4):282–96. Braun M, Hasson-Ohayon I, Perry S, Kaufman B, Uziely B. Motivation for giving birth after breast cancer. Psychooncology. 2005;14(4):282–96.
38.
go back to reference Brown C, Pikler VI, Lavish LA, Keune KM, Hutto CJ. Surviving childhood leukemia: career, family, and future expectations. Qual Health Res. 2008;18(1):19–30. Brown C, Pikler VI, Lavish LA, Keune KM, Hutto CJ. Surviving childhood leukemia: career, family, and future expectations. Qual Health Res. 2008;18(1):19–30.
39.
go back to reference Cantrell MA, Conte TM. Between being cured and being healed: the paradox of childhood cancer survivorship. Qual Health Res. 2009;19(3):312–22. Cantrell MA, Conte TM. Between being cured and being healed: the paradox of childhood cancer survivorship. Qual Health Res. 2009;19(3):312–22.
40.
go back to reference Carpentier MY, Fortenberry JD, Ott MA, Brames MJ, Einhorn LH. Perceptions of masculinity and selfimage in adolescent and young adult testicular cancer survivors: implications for romantic and sexual relationships. Psychooncology. 2011;20(7):738–45. Carpentier MY, Fortenberry JD, Ott MA, Brames MJ, Einhorn LH. Perceptions of masculinity and selfimage in adolescent and young adult testicular cancer survivors: implications for romantic and sexual relationships. Psychooncology. 2011;20(7):738–45.
41.
go back to reference Casillas J, Kahn KL, Doose M, Landier W, Bhatia S, Hernandez J, et al. Transitioning childhood cancer survivors to adult-centered healthcare: insights from parents, adolescent, and young adult survivors. Psychooncology. 2010;19(9):982–90. Casillas J, Kahn KL, Doose M, Landier W, Bhatia S, Hernandez J, et al. Transitioning childhood cancer survivors to adult-centered healthcare: insights from parents, adolescent, and young adult survivors. Psychooncology. 2010;19(9):982–90.
42.
go back to reference Casillas JN, Zebrack BJ, Zeltzer LK. Health-related quality of life for Latino survivors of childhood cancer. J Psychosoc Oncol. 2006;24(3):125–45. Casillas JN, Zebrack BJ, Zeltzer LK. Health-related quality of life for Latino survivors of childhood cancer. J Psychosoc Oncol. 2006;24(3):125–45.
43.
go back to reference Chaiyaratana C, Patoomwan A, Chintanadilok N, Knafl K. Adolescent Cancer Survivors' and their Mothers' Perceptions of Vulnerabilities, Health Status, Treatment Effects, and Roles and Health-related Behaviors. Pac Rim Int J Nurs Res Thail. 2012;16(4):257–76. Chaiyaratana C, Patoomwan A, Chintanadilok N, Knafl K. Adolescent Cancer Survivors' and their Mothers' Perceptions of Vulnerabilities, Health Status, Treatment Effects, and Roles and Health-related Behaviors. Pac Rim Int J Nurs Res Thail. 2012;16(4):257–76.
44.
go back to reference Chen C, Chen Y, Haase JE. Games of lives in surviving childhood brain tumors. West J Nurs Res. 2008;30(4):435–57. Chen C, Chen Y, Haase JE. Games of lives in surviving childhood brain tumors. West J Nurs Res. 2008;30(4):435–57.
45.
go back to reference Connell S, Patterson C, Newman B. A qualitative analysis of reproductive issues raised by young Australian women with breast cancer. Health Care Women Int. 2006;27(1):94–110. Connell S, Patterson C, Newman B. A qualitative analysis of reproductive issues raised by young Australian women with breast cancer. Health Care Women Int. 2006;27(1):94–110.
46.
go back to reference Corney R, Puthussery S, Swinglehurst J. The stressors and vulnerabilities of young single childless women with breast cancer: a qualitative study. Eur J Oncol Nurs. 2014;18(1):17–22. Corney R, Puthussery S, Swinglehurst J. The stressors and vulnerabilities of young single childless women with breast cancer: a qualitative study. Eur J Oncol Nurs. 2014;18(1):17–22.
47.
go back to reference Crom DB, Hinds PS, Gattuso JS, Tyc V, Hudson MM. Creating the basis for a breast health program for female survivors of Hodgkin disease using a participatory research approach. Oncol Nurs Forum. 2005;32(6):1131–41. Crom DB, Hinds PS, Gattuso JS, Tyc V, Hudson MM. Creating the basis for a breast health program for female survivors of Hodgkin disease using a participatory research approach. Oncol Nurs Forum. 2005;32(6):1131–41.
48.
go back to reference D'Agostino NM, Edelstein K. Psychosocial challenges and resource needs of young adult cancer survivors: implications for program development. J Psychosoc Oncol. 2013;31(6):585–600. D'Agostino NM, Edelstein K. Psychosocial challenges and resource needs of young adult cancer survivors: implications for program development. J Psychosoc Oncol. 2013;31(6):585–600.
49.
go back to reference Dryden A, Ussher JM, Perz J. Young women's construction of their post-cancer fertility. Psychol Health. 2014;29(11):1341–60. Dryden A, Ussher JM, Perz J. Young women's construction of their post-cancer fertility. Psychol Health. 2014;29(11):1341–60.
50.
go back to reference Duffey-Lind EC, O’Holleran E, Healey M, Vettese M, Diller L, Park ER. Transitioning to survivorship: a pilot study. J Pediatr Oncol Nurs. 2006;23(6):335–43. Duffey-Lind EC, O’Holleran E, Healey M, Vettese M, Diller L, Park ER. Transitioning to survivorship: a pilot study. J Pediatr Oncol Nurs. 2006;23(6):335–43.
51.
go back to reference Dumas A, Cailbault I, Perrey C, Oberlin O, De Vathaire F, Amiel P. Educational trajectories after childhood cancer: When illness experience matters. Soc Sci Med. 2015;135:67–74. Dumas A, Cailbault I, Perrey C, Oberlin O, De Vathaire F, Amiel P. Educational trajectories after childhood cancer: When illness experience matters. Soc Sci Med. 2015;135:67–74.
52.
go back to reference Earle EA, Davies H, Greenfield D, Ross R, Eiser C. Follow-up care for childhood cancer survivors: a focus group analysis. Eur J Cancer. 2005;41(18):2882–6. Earle EA, Davies H, Greenfield D, Ross R, Eiser C. Follow-up care for childhood cancer survivors: a focus group analysis. Eur J Cancer. 2005;41(18):2882–6.
53.
go back to reference Easley J, Miedema B, Robinson L. It's the "good" cancer, so who cares? Perceived lack of support among young thyroid cancer survivors. Oncol Nurs Forum. 2013;40(6):596–600. Easley J, Miedema B, Robinson L. It's the "good" cancer, so who cares? Perceived lack of support among young thyroid cancer survivors. Oncol Nurs Forum. 2013;40(6):596–600.
54.
go back to reference Enskar K, Bertero C. Young adult survivors of childhood cancer; experiences affecting self-image, relationships, and present life. Cancer Nurs. 2010;33(1):E18–24. Enskar K, Bertero C. Young adult survivors of childhood cancer; experiences affecting self-image, relationships, and present life. Cancer Nurs. 2010;33(1):E18–24.
55.
go back to reference Fern LA, Taylor RM, Whelan J, Pearce S, Grew T, Brooman K, et al. The art of age-appropriate care: Reflecting on a conceptual model of the cancer experience for teenagers and young adults. Cancer Nurs. 2013;36(5):E27–38. Fern LA, Taylor RM, Whelan J, Pearce S, Grew T, Brooman K, et al. The art of age-appropriate care: Reflecting on a conceptual model of the cancer experience for teenagers and young adults. Cancer Nurs. 2013;36(5):E27–38.
56.
go back to reference Fisher C, O'Connor M. "Motherhood" in the context of living with breast cancer. Cancer Nurs. 2012;35(2):157–63. Fisher C, O'Connor M. "Motherhood" in the context of living with breast cancer. Cancer Nurs. 2012;35(2):157–63.
57.
go back to reference Gibson F, Aslett H, Levitt G, Richardson A. Follow up after childhood cancer: a typology of young people's health care need. Clin Eff Nurs. 2005;9(3-4):133–46. Gibson F, Aslett H, Levitt G, Richardson A. Follow up after childhood cancer: a typology of young people's health care need. Clin Eff Nurs. 2005;9(3-4):133–46.
58.
go back to reference Gorman JR, Bailey S, Pierce JP, Su HI. How do you feel about fertility and parenthood? The voices of young female cancer survivors. J Cancer Surviv. 2012;6(2):200–9. Gorman JR, Bailey S, Pierce JP, Su HI. How do you feel about fertility and parenthood? The voices of young female cancer survivors. J Cancer Surviv. 2012;6(2):200–9.
59.
go back to reference Granek L, Nathan PC, Rosenberg-Yunger ZR, D'Agostino N, Amin L, Barr RD, et al. Psychological factors impacting transition from paediatric to adult care by childhood cancer survivors. J Cancer Surviv. 2012;6(3):260–9. Granek L, Nathan PC, Rosenberg-Yunger ZR, D'Agostino N, Amin L, Barr RD, et al. Psychological factors impacting transition from paediatric to adult care by childhood cancer survivors. J Cancer Surviv. 2012;6(3):260–9.
60.
go back to reference Halliday LE, Boughton MA, Kerridge I. Mothering and Self-Othering: The Impact of Uncertain Reproductive Capability in Young Women After Hematological Malignancy. Health Care Women Int. 2014;35(3):249–65. Halliday LE, Boughton MA, Kerridge I. Mothering and Self-Othering: The Impact of Uncertain Reproductive Capability in Young Women After Hematological Malignancy. Health Care Women Int. 2014;35(3):249–65.
61.
go back to reference Hauken MA, Larsen TM, Holsen I. Meeting reality: young adult cancer survivors' experiences of reentering everyday life after cancer treatment. Cancer Nurs. 2013;36(5):E17–26. Hauken MA, Larsen TM, Holsen I. Meeting reality: young adult cancer survivors' experiences of reentering everyday life after cancer treatment. Cancer Nurs. 2013;36(5):E17–26.
62.
go back to reference Howard AF. Tan de Bibiana J, Smillie K, Goddard K, Pritchard S, Olson R et al. Trajectories of social isolation in adult survivors of childhood cancer. J Cancer Surviv. 2014;8(1):80–93. Howard AF. Tan de Bibiana J, Smillie K, Goddard K, Pritchard S, Olson R et al. Trajectories of social isolation in adult survivors of childhood cancer. J Cancer Surviv. 2014;8(1):80–93.
63.
go back to reference Jones BL, Volker DL, Vinajeras Y, Butros L, Fitchpatrick C, Rossetto K. The meaning of surviving cancer for Latino adolescents and emerging young adults. Cancer Nurs. 2010;33(1):74–81. Jones BL, Volker DL, Vinajeras Y, Butros L, Fitchpatrick C, Rossetto K. The meaning of surviving cancer for Latino adolescents and emerging young adults. Cancer Nurs. 2010;33(1):74–81.
64.
go back to reference Karian VE, Jankowski SM, Beal JA. Exploring the lived-experience of childhood cancer survivors. J Pediatr Oncol Nurs. 1998;15(3):153–62. Karian VE, Jankowski SM, Beal JA. Exploring the lived-experience of childhood cancer survivors. J Pediatr Oncol Nurs. 1998;15(3):153–62.
65.
go back to reference Kent EE, Parry C, Montoya MJ, Sender LS, Morris RA, Anton-Culver H. "You're too young for this": adolescent and young adults' perspectives on cancer survivorship. J Psychosoc Oncol. 2012;30(2):260–79. Kent EE, Parry C, Montoya MJ, Sender LS, Morris RA, Anton-Culver H. "You're too young for this": adolescent and young adults' perspectives on cancer survivorship. J Psychosoc Oncol. 2012;30(2):260–79.
66.
go back to reference Kirchhoff AC, Kuhlthau K, Pajolek H, Leisenring W, Armstrong GT, Robison LL, et al. Employersponsored health insurance coverage limitations: results from the Childhood Cancer Survivor Study. Support Care Cancer. 2013;21(2):377–83. Kirchhoff AC, Kuhlthau K, Pajolek H, Leisenring W, Armstrong GT, Robison LL, et al. Employersponsored health insurance coverage limitations: results from the Childhood Cancer Survivor Study. Support Care Cancer. 2013;21(2):377–83.
67.
go back to reference Kirchhoff AC, Montenegro RE, Warner EL, Wright J, Fluchel M, Stroup AM, et al. Childhood cancer survivors' primary care and follow-up experiences. Support Care Cancer. 2014;22(6):1629–35. Kirchhoff AC, Montenegro RE, Warner EL, Wright J, Fluchel M, Stroup AM, et al. Childhood cancer survivors' primary care and follow-up experiences. Support Care Cancer. 2014;22(6):1629–35.
68.
go back to reference Langeveld N, Ubbink M, Smets E. 'I don't have any energy': the experience of fatigue in young adult survivors of childhood cancer. Eur J Oncol Nurs. 2000;4(1):20–8. Langeveld N, Ubbink M, Smets E. 'I don't have any energy': the experience of fatigue in young adult survivors of childhood cancer. Eur J Oncol Nurs. 2000;4(1):20–8.
69.
go back to reference Lewis PE, Sheng M, Rhodes MM, Jackson KE, Schover LR. Psychosocial Concerns of Young African American Breast Cancer Survivors. J Psychosoc Oncol. 2012;30(2):168–84. Lewis PE, Sheng M, Rhodes MM, Jackson KE, Schover LR. Psychosocial Concerns of Young African American Breast Cancer Survivors. J Psychosoc Oncol. 2012;30(2):168–84.
70.
go back to reference Lie HC, Loge JH, Fosså SD, Hamre HM, Hess SL, Mellblom AV, et al. Providing information about late effects after childhood cancer: Lymphoma survivors’ preferences for what, how and when. Patient Educ Couns. 2015;98(5):604–11. Lie HC, Loge JH, Fosså SD, Hamre HM, Hess SL, Mellblom AV, et al. Providing information about late effects after childhood cancer: Lymphoma survivors’ preferences for what, how and when. Patient Educ Couns. 2015;98(5):604–11.
71.
go back to reference McLoone JK, Wakefield CE, Butow P, Fleming C, Cohn RJ. Returning to school after adolescent cancer: A qualitative examination of australian survivors' and their families' perspectives. J Adolesc Young Adult Oncol. 2011;1(2):87–94. McLoone JK, Wakefield CE, Butow P, Fleming C, Cohn RJ. Returning to school after adolescent cancer: A qualitative examination of australian survivors' and their families' perspectives. J Adolesc Young Adult Oncol. 2011;1(2):87–94.
72.
go back to reference Miedema B, Easley J, Hamilton R. Young adults' experiences with cancer: comments from patients and survivors. Can Fam Physician. 2006;52(11):1446–7. Miedema B, Easley J, Hamilton R. Young adults' experiences with cancer: comments from patients and survivors. Can Fam Physician. 2006;52(11):1446–7.
73.
go back to reference Miedema B, Easley J, Robinson LM. Do current cancer follow-up care practices meet the needs of young adult cancer survivors in Canada? A qualitative inquiry. Curr Oncol. 2013;20(1):14–22. Miedema B, Easley J, Robinson LM. Do current cancer follow-up care practices meet the needs of young adult cancer survivors in Canada? A qualitative inquiry. Curr Oncol. 2013;20(1):14–22.
74.
go back to reference Park ER, Kirchhoff AC, Zallen JP, Weissman JS, Pajolek H, Mertens AC, et al. Childhood Cancer Survivor Study participants' perceptions and knowledge of health insurance coverage: implications for the Affordable Care Act. J Cancer Surviv. 2012;6(3):251–9. Park ER, Kirchhoff AC, Zallen JP, Weissman JS, Pajolek H, Mertens AC, et al. Childhood Cancer Survivor Study participants' perceptions and knowledge of health insurance coverage: implications for the Affordable Care Act. J Cancer Surviv. 2012;6(3):251–9.
75.
go back to reference Park EB, Emmons KM, Malloy NW, Seifer E. A qualitative exploration of health perceptions and behaviors among adult survivors of childhood cancers. J Cancer Educ. 2002;17(4):211–5. Park EB, Emmons KM, Malloy NW, Seifer E. A qualitative exploration of health perceptions and behaviors among adult survivors of childhood cancers. J Cancer Educ. 2002;17(4):211–5.
76.
go back to reference Parry C. Embracing uncertainty: an exploration of the experiences of childhood cancer survivors. Qual Health Res. 2003;13(2):227–46. Parry C. Embracing uncertainty: an exploration of the experiences of childhood cancer survivors. Qual Health Res. 2003;13(2):227–46.
77.
go back to reference Parry C, Chesler MA. Thematic evidence of psychosocial thriving in childhood cancer survivors. Qual Health Res. 2005;15(8):1055–73. Parry C, Chesler MA. Thematic evidence of psychosocial thriving in childhood cancer survivors. Qual Health Res. 2005;15(8):1055–73.
78.
go back to reference Parsons JA, Eakin JM, Bell RS, Franche RL, Davis AM. "So, are you back to work yet?" Reconceptualizing 'work' and 'return to work' in the context of primary bone cancer. Soc Sci Med. 2008;67(11):1826-1836. Parsons JA, Eakin JM, Bell RS, Franche RL, Davis AM. "So, are you back to work yet?" Reconceptualizing 'work' and 'return to work' in the context of primary bone cancer. Soc Sci Med. 2008;67(11):1826-1836.
79.
go back to reference Penrose R, Beatty L, Mattiske J, Koczwara B. Fertility and cancer - A qualitative study of Australian cancer survivors. Support Care Cancer. 2012;20(6):1259–65. Penrose R, Beatty L, Mattiske J, Koczwara B. Fertility and cancer - A qualitative study of Australian cancer survivors. Support Care Cancer. 2012;20(6):1259–65.
80.
go back to reference Prouty D, Ward-Smith P, Hutto CJ. The lived experience of adult survivors of childhood cancer. J Pediatr Oncol Nurs. 2006;23(3):143–51. Prouty D, Ward-Smith P, Hutto CJ. The lived experience of adult survivors of childhood cancer. J Pediatr Oncol Nurs. 2006;23(3):143–51.
81.
go back to reference Quinn GP, Huang IC, Murphy D, Zidonik-Eddelton K, Krull KR. Missing content from health-related quality of life instruments: interviews with young adult survivors of childhood cancer. Qual Life Res. 2013;22(1):111–8. Quinn GP, Huang IC, Murphy D, Zidonik-Eddelton K, Krull KR. Missing content from health-related quality of life instruments: interviews with young adult survivors of childhood cancer. Qual Life Res. 2013;22(1):111–8.
82.
go back to reference Robinson L, Miedema B, Easley J. Young adult cancer survivors and the challenges of intimacy. J Psychosoc Oncol. 2014;32(4):447–62. Robinson L, Miedema B, Easley J. Young adult cancer survivors and the challenges of intimacy. J Psychosoc Oncol. 2014;32(4):447–62.
83.
go back to reference Rosenberg-Yunger ZRS, Klassen AF, Amin L, Granek L, D'Agostino NM, Boydell KM, et al. Barriers and facilitators of transition from pediatric to adult long-term follow-up care in childhood cancer survivors. J Adolesc Young Adult Oncol. 2013;2(3):104–11. Rosenberg-Yunger ZRS, Klassen AF, Amin L, Granek L, D'Agostino NM, Boydell KM, et al. Barriers and facilitators of transition from pediatric to adult long-term follow-up care in childhood cancer survivors. J Adolesc Young Adult Oncol. 2013;2(3):104–11.
84.
go back to reference Sharp LK, Carvalho P, Southward M, Schmidt ML, Jabine LN, Stolley MR, et al. Electronic personal health records for childhood cancer survivors: An exploratory study. J Adolesc Young Adult Oncol. 2014;3(3):117–22. Sharp LK, Carvalho P, Southward M, Schmidt ML, Jabine LN, Stolley MR, et al. Electronic personal health records for childhood cancer survivors: An exploratory study. J Adolesc Young Adult Oncol. 2014;3(3):117–22.
85.
go back to reference Swenson MM, MacLeod JS, Williams SD, Miller AM, Champion VL. Quality of life after among ovarian germ cell cancer survivors: a narrative analysis. Oncol Nurs Forum. 2003;30(3):380. Swenson MM, MacLeod JS, Williams SD, Miller AM, Champion VL. Quality of life after among ovarian germ cell cancer survivors: a narrative analysis. Oncol Nurs Forum. 2003;30(3):380.
86.
go back to reference Thompson AL, Long KA, Marsland AL. Impact of childhood cancer on emerging adult survivors' romantic relationships: a qualitative account. J Sex Med. 2013;10(Suppl 1):65–73. Thompson AL, Long KA, Marsland AL. Impact of childhood cancer on emerging adult survivors' romantic relationships: a qualitative account. J Sex Med. 2013;10(Suppl 1):65–73.
87.
go back to reference Thompson K, Palmer S, Dyson G. Adolescents & young adults: issues in transition from active therapy into follow-up care. Eur J Oncol Nurs. 2009;13(3):207–12. Thompson K, Palmer S, Dyson G. Adolescents & young adults: issues in transition from active therapy into follow-up care. Eur J Oncol Nurs. 2009;13(3):207–12.
88.
go back to reference Zebrack B, Chesler MA, Kaplan S. To foster healing among adolescents and young adults with cancer: what helps? What hurts? Support Care Cancer. 2010;18(1):131–5. Zebrack B, Chesler MA, Kaplan S. To foster healing among adolescents and young adults with cancer: what helps? What hurts? Support Care Cancer. 2010;18(1):131–5.
89.
go back to reference Zebrack B, Kent EE, Keegan TH, Kato I, Smith AW, Group AHSC. "Cancer sucks," and other ponderings by adolescent and young adult cancer survivors. J Psychosoc Oncol. 2014;32(1):1–15. Zebrack B, Kent EE, Keegan TH, Kato I, Smith AW, Group AHSC. "Cancer sucks," and other ponderings by adolescent and young adult cancer survivors. J Psychosoc Oncol. 2014;32(1):1–15.
90.
go back to reference Zebrack BJ, Casillas J, Nohr L, Adams H, Zeltzer LK. Fertility issues for young adult survivors of childhood cancer. Psychooncology. 2004;13(10):689–99. Zebrack BJ, Casillas J, Nohr L, Adams H, Zeltzer LK. Fertility issues for young adult survivors of childhood cancer. Psychooncology. 2004;13(10):689–99.
91.
go back to reference Nass SJ, Beaupin LK, Demark-Wahnefried W, Fasciano K, Ganz PA, Hayes-Lattin B, et al. Identifying and addressing the needs of adolescents and young adults with cancer: summary of an Institute of Medicine workshop. Oncologist. 2015;20(2):186–95.CrossRefPubMedPubMedCentral Nass SJ, Beaupin LK, Demark-Wahnefried W, Fasciano K, Ganz PA, Hayes-Lattin B, et al. Identifying and addressing the needs of adolescents and young adults with cancer: summary of an Institute of Medicine workshop. Oncologist. 2015;20(2):186–95.CrossRefPubMedPubMedCentral
92.
go back to reference Hall AE, Sanson-Fisher RW, Lynagh MC, Tzelepis F, D’Este C. What do haematological cancer survivors want help with? A cross-sectional investigation of unmet supportive care needs. BMC Research Notes. 2015;8(1):221.CrossRefPubMedPubMedCentral Hall AE, Sanson-Fisher RW, Lynagh MC, Tzelepis F, D’Este C. What do haematological cancer survivors want help with? A cross-sectional investigation of unmet supportive care needs. BMC Research Notes. 2015;8(1):221.CrossRefPubMedPubMedCentral
93.
go back to reference Harrison JD, Young JM, Price MA, Butow PN, Solomon MJ. What are the unmet supportive care needs of people with cancer? A systematic review. Support Care Cancer. 2009;17(8):1117–28.CrossRefPubMed Harrison JD, Young JM, Price MA, Butow PN, Solomon MJ. What are the unmet supportive care needs of people with cancer? A systematic review. Support Care Cancer. 2009;17(8):1117–28.CrossRefPubMed
94.
go back to reference Cox CL, Sherrill-Mittleman DA, Riley BB, Hudson MM, Williams LJ, Leisenring WM, et al. Development of a comprehensive health-related needs assessment for adult survivors of childhood cancer. J Cancer Surviv. 2013;7(1):1–19.CrossRefPubMed Cox CL, Sherrill-Mittleman DA, Riley BB, Hudson MM, Williams LJ, Leisenring WM, et al. Development of a comprehensive health-related needs assessment for adult survivors of childhood cancer. J Cancer Surviv. 2013;7(1):1–19.CrossRefPubMed
95.
go back to reference Strauser D, Klosky JL, Brinkman TM, Wong AW, Chan F, Lanctot J, et al. Career readiness in adult survivors of childhood cancer: a report from the St. Jude lifetime cohort study. J Cancer Surviv. 2015;9(1):20–9.CrossRefPubMed Strauser D, Klosky JL, Brinkman TM, Wong AW, Chan F, Lanctot J, et al. Career readiness in adult survivors of childhood cancer: a report from the St. Jude lifetime cohort study. J Cancer Surviv. 2015;9(1):20–9.CrossRefPubMed
96.
go back to reference Barnett M, McDonnell G, DeRosa A, Schuler T, Philip E, Peterson L, et al. Psychosocial outcomes and interventions among cancer survivors diagnosed during adolescence and young adulthood (AYA): a systematic review. J Cancer Surviv. 2016;10(5):814–31.CrossRefPubMedPubMedCentral Barnett M, McDonnell G, DeRosa A, Schuler T, Philip E, Peterson L, et al. Psychosocial outcomes and interventions among cancer survivors diagnosed during adolescence and young adulthood (AYA): a systematic review. J Cancer Surviv. 2016;10(5):814–31.CrossRefPubMedPubMedCentral
97.
go back to reference Hinds PS, Hockenberry M, Tong X, Rai SN, Gattuso JS, McCarthy K, et al. Validity and reliability of a new instrument to measure cancer-related fatigue in adolescents. J Pain Symptom Manag. 2007;34(6):607–18.CrossRef Hinds PS, Hockenberry M, Tong X, Rai SN, Gattuso JS, McCarthy K, et al. Validity and reliability of a new instrument to measure cancer-related fatigue in adolescents. J Pain Symptom Manag. 2007;34(6):607–18.CrossRef
98.
go back to reference Hoyt MA, Cano SJ, Saigal CS, Stanton AL. Health-related quality of life in young men with testicular cancer: validation of the cancer assessment for young adults (CAYA). J Cancer Surviv. 2013;7(4):630–40.CrossRefPubMed Hoyt MA, Cano SJ, Saigal CS, Stanton AL. Health-related quality of life in young men with testicular cancer: validation of the cancer assessment for young adults (CAYA). J Cancer Surviv. 2013;7(4):630–40.CrossRefPubMed
99.
go back to reference Kenzik KM, Huang I, Brinkman TM, Baughman B, Ness KK, Shenkman EA, et al. The childhood cancer survivor study–neurocognitive questionnaire (CCSS-NCQ) revised: item response analysis and concurrent validity. Neuropsychology. 2015;29(1):31.CrossRefPubMed Kenzik KM, Huang I, Brinkman TM, Baughman B, Ness KK, Shenkman EA, et al. The childhood cancer survivor study–neurocognitive questionnaire (CCSS-NCQ) revised: item response analysis and concurrent validity. Neuropsychology. 2015;29(1):31.CrossRefPubMed
100.
go back to reference Maurice-Stam H, Broek A, Kolk AM, Vrijmoet-Wiersma JM. Meijer-van den Bergh E, van Dijk EM et al. measuring perceived benefit and disease-related burden in young cancer survivors: validation of the benefit and burden scale for children (BBSC) in the Netherlands. Support Care Cancer. 2011;19(8):1249–53.CrossRefPubMedPubMedCentral Maurice-Stam H, Broek A, Kolk AM, Vrijmoet-Wiersma JM. Meijer-van den Bergh E, van Dijk EM et al. measuring perceived benefit and disease-related burden in young cancer survivors: validation of the benefit and burden scale for children (BBSC) in the Netherlands. Support Care Cancer. 2011;19(8):1249–53.CrossRefPubMedPubMedCentral
101.
go back to reference Zebrack BJ, Donohue JE, Gurney JG, Chesler MA, Bhatia S, Landier W. Psychometric evaluation of the impact of cancer (IOC-CS) scale for young adult survivors of childhood cancer. Qual Life Res. 2010;19(2):207–18.CrossRefPubMedPubMedCentral Zebrack BJ, Donohue JE, Gurney JG, Chesler MA, Bhatia S, Landier W. Psychometric evaluation of the impact of cancer (IOC-CS) scale for young adult survivors of childhood cancer. Qual Life Res. 2010;19(2):207–18.CrossRefPubMedPubMedCentral
102.
go back to reference Huang I-C, Quinn GP, Wen P-S, Shenkman EA, Revicki DA, Krull K, et al. Using three legacy measures to develop a health-related quality of life tool for young adult survivors of childhood cancer. Qual Life Res. 2012;21(8):1437–50.CrossRefPubMed Huang I-C, Quinn GP, Wen P-S, Shenkman EA, Revicki DA, Krull K, et al. Using three legacy measures to develop a health-related quality of life tool for young adult survivors of childhood cancer. Qual Life Res. 2012;21(8):1437–50.CrossRefPubMed
Metadata
Title
Patterns of unmet needs in adolescent and young adult (AYA) cancer survivors: in their own words
Authors
Alex W. K. Wong
Ting-ting Chang
Katrina Christopher
Stephen C. L. Lau
Lynda K. Beaupin
Brad Love
Kim L. Lipsey
Michael Feuerstein
Publication date
01-12-2017
Publisher
Springer US
Published in
Journal of Cancer Survivorship / Issue 6/2017
Print ISSN: 1932-2259
Electronic ISSN: 1932-2267
DOI
https://doi.org/10.1007/s11764-017-0613-4

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