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Published in: Journal of Cancer Survivorship 1/2017

01-02-2017

Barriers to follow-up care among survivors of adolescent and young adult cancer

Authors: Rochelle R. Smits-Seemann, Sapna Kaul, Eduardo R. Zamora, Yelena P. Wu, Anne C. Kirchhoff

Published in: Journal of Cancer Survivorship | Issue 1/2017

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Abstract

Purpose

Though the need for risk-based follow-up care for survivors of adolescent and young adult (AYA) cancer has been documented, survivors often report forgoing recommended care due to cost. We sought to understand whether additional barriers to follow-up care exist for AYA survivors.

Methods

We recruited survivors who were diagnosed with cancer between the ages of 15 and 39 using the Utah Cancer Registry (UCR). Overall, 28 survivors participated in 6 focus groups held between March and May 2015 in Salt Lake City and St. George, UT. Focus group discussions focused on the reasons survivors may or may not attend recommended medical visits after completing therapy.

Results

Survivors reported myriad barriers to follow-up medical visits, including lack of clear provider recommendation, fear of recurrent cancer diagnosis, wishing to move on with life, competing life responsibilities due to work and children, and not perceiving the need for a visit due to lack of symptoms.

Conclusions

Though cost likely plays a major part in follow-up care adherence for survivors of AYA cancer, in our focus groups, participants indicated there were many other psychosocial and logistic barriers to care. Such factors play an important role in the day-to-day lives of survivors and are critical in medical decision-making.

Implications for cancer survivors

Several factors impede follow-up care adherence for survivors of AYA cancer that are amenable to interventions, including clearer provider recommendations, flexible appointment times, and childcare availability in clinics.
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Literature
1.
go back to reference Coccia PF, Altman J, Bhatia S, Borinstein SC, Flynn J, George S, Goldsby R, Hayashi R, Huang MS, Johnson RH. Adolescent and young adult oncology. J Natl Compr Cancer Netw. 2012;10(9):1112–50. Coccia PF, Altman J, Bhatia S, Borinstein SC, Flynn J, George S, Goldsby R, Hayashi R, Huang MS, Johnson RH. Adolescent and young adult oncology. J Natl Compr Cancer Netw. 2012;10(9):1112–50.
3.
go back to reference NCCN clinical practice guidelines in oncology. 2013. NCCN clinical practice guidelines in oncology. 2013.
4.
go back to reference Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, Meadows AT, Friedman DL, Marina N, Hobbie W, Kadan-Lottick NS. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med. 2006;355(15):1572–82.CrossRefPubMed Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, Meadows AT, Friedman DL, Marina N, Hobbie W, Kadan-Lottick NS. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med. 2006;355(15):1572–82.CrossRefPubMed
5.
go back to reference Skinner R, Wallace WHB, Levitt GA, Late Effects Group LEG, UK Children's Cancer Study Group. Long-term follow-up of people who have survived cancer during childhood. The Lancet Oncology. 2006;7(6):489–98.CrossRefPubMed Skinner R, Wallace WHB, Levitt GA, Late Effects Group LEG, UK Children's Cancer Study Group. Long-term follow-up of people who have survived cancer during childhood. The Lancet Oncology. 2006;7(6):489–98.CrossRefPubMed
6.
go back to reference Weaver KE, Rowland JH, Bellizzi KM, Aziz NM. Forgoing medical care because of cost: assessing disparities in healthcare access among cancer survivors living in the United States. Cancer. 2010;116(14):3493–504.CrossRefPubMedPubMedCentral Weaver KE, Rowland JH, Bellizzi KM, Aziz NM. Forgoing medical care because of cost: assessing disparities in healthcare access among cancer survivors living in the United States. Cancer. 2010;116(14):3493–504.CrossRefPubMedPubMedCentral
7.
go back to reference Kirchhoff AC, Lyles CR, Fluchel M, Wright J, Leisenring W. Limitations in health care access and utilization among long-term survivors of adolescent and young adult cancer. Cancer. 2012;118(23):5964–72.CrossRefPubMed Kirchhoff AC, Lyles CR, Fluchel M, Wright J, Leisenring W. Limitations in health care access and utilization among long-term survivors of adolescent and young adult cancer. Cancer. 2012;118(23):5964–72.CrossRefPubMed
8.
go back to reference Keegan TH, Tao L, DeRouen MC, XC W, Prasad P, Lynch CF, Shnorhavorian M, Zebrack BJ, Chu R, Harlan LC, Smith AW, Parsons HM. Medical care in adolescents and young adult cancer survivors: what are the biggest access-related barriers? J Cancer Surviv. 2014;8(2):282–92.CrossRefPubMedPubMedCentral Keegan TH, Tao L, DeRouen MC, XC W, Prasad P, Lynch CF, Shnorhavorian M, Zebrack BJ, Chu R, Harlan LC, Smith AW, Parsons HM. Medical care in adolescents and young adult cancer survivors: what are the biggest access-related barriers? J Cancer Surviv. 2014;8(2):282–92.CrossRefPubMedPubMedCentral
9.
go back to reference Kaul S, Fair D, Wright J, Kirchhoff AC. Dental care for survivors of adolescent and young adult cancer: special considerations. J Adolesc Young Adult Oncol. Kaul S, Fair D, Wright J, Kirchhoff AC. Dental care for survivors of adolescent and young adult cancer: special considerations. J Adolesc Young Adult Oncol.
10.
go back to reference Kaul S, Fluchel M, Spraker-Perlman H, Parmeter CF, Kirchhoff A. Healthcare experiences of long-term survivors of adolescent and young adult cancer. Support Care Cancer. 2016:In Press. Kaul S, Fluchel M, Spraker-Perlman H, Parmeter CF, Kirchhoff A. Healthcare experiences of long-term survivors of adolescent and young adult cancer. Support Care Cancer. 2016:In Press.
11.
go back to reference Thompson K, Palmer S, Dyson G. Adolescents and 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 and young adults: issues in transition from active therapy into follow-up care. Eur J Oncol Nurs. 2009;13(3):207–12.CrossRefPubMed
12.
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
13.
go back to reference Keegan TH, Lichtensztajn DY, Kato I, Kent EE, Wu XC, West MM, Hamilton AS, Zebrack B, Bellizzi KM, Smith AW. 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, Hamilton AS, Zebrack B, Bellizzi KM, Smith AW. 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
14.
go back to reference Arnett JJ. Conceptions of the transition to adulthood: perspectives from adolescence through midlife. J Adult Dev. 2001;8(2):133–43.CrossRef Arnett JJ. Conceptions of the transition to adulthood: perspectives from adolescence through midlife. J Adult Dev. 2001;8(2):133–43.CrossRef
15.
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
16.
go back to reference Zebrack B, Chesler M, Penn A. Psychosocial support. In: Bleyer W, Barr R, editors. Cancer in adolescents and young adults. New York, NY: Springer Verlag; 2007. p. 375–85.CrossRef Zebrack B, Chesler M, Penn A. Psychosocial support. In: Bleyer W, Barr R, editors. Cancer in adolescents and young adults. New York, NY: Springer Verlag; 2007. p. 375–85.CrossRef
17.
go back to reference Eiser C, Kuperberg A. Psychosocial support for adolescents and young adults. In: Bleyer W, Barr R, editors. Cancer in adolescents and young adults. New York, NY: Springer Verlag; 2007. p. 365–73.CrossRef Eiser C, Kuperberg A. Psychosocial support for adolescents and young adults. In: Bleyer W, Barr R, editors. Cancer in adolescents and young adults. New York, NY: Springer Verlag; 2007. p. 365–73.CrossRef
18.
go back to reference Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277–88.CrossRefPubMed Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277–88.CrossRefPubMed
19.
go back to reference Klosky JL, Cash DK, Buscemi J, Lensing S, Garces-Webb DM, Zhao W, Wiard S, Hudson MM. Factors influencing long-term follow-up clinic attendance among survivors of childhood cancer. J Cancer Surviv. 2008;2(4):225–32.CrossRefPubMedPubMedCentral Klosky JL, Cash DK, Buscemi J, Lensing S, Garces-Webb DM, Zhao W, Wiard S, Hudson MM. Factors influencing long-term follow-up clinic attendance among survivors of childhood cancer. J Cancer Surviv. 2008;2(4):225–32.CrossRefPubMedPubMedCentral
20.
go back to reference Berg CJ, Stratton E, Esiashvili N, Mertens A. Young adult cancer survivors’ experience with cancer treatment and follow-up care and perceptions of barriers to engaging in recommended care. J Cancer Educ. 2015:1–13. Berg CJ, Stratton E, Esiashvili N, Mertens A. Young adult cancer survivors’ experience with cancer treatment and follow-up care and perceptions of barriers to engaging in recommended care. J Cancer Educ. 2015:1–13.
21.
go back to reference Group CsO. Long-term follow-up guidelines for survivors of childhood, adolescent and young adult cancers, version 3.0. Arcada, CA: Children's Oncology Group; 2008. Group CsO. Long-term follow-up guidelines for survivors of childhood, adolescent and young adult cancers, version 3.0. Arcada, CA: Children's Oncology Group; 2008.
22.
go back to reference Landier W, Bhatia S, Eshelman DA, Forte KJ, Sweeney T, Hester AL, Darling J, Armstrong FD, Blatt J, Constine LS. Development of risk-based guidelines for pediatric cancer survivors: the Children’s Oncology Group Long-Term Follow-Up Guidelines from the Children’s Oncology Group Late Effects Committee and Nursing Discipline. J Clin Oncol. 2004;22(24):4979–90.CrossRefPubMed Landier W, Bhatia S, Eshelman DA, Forte KJ, Sweeney T, Hester AL, Darling J, Armstrong FD, Blatt J, Constine LS. Development of risk-based guidelines for pediatric cancer survivors: the Children’s Oncology Group Long-Term Follow-Up Guidelines from the Children’s Oncology Group Late Effects Committee and Nursing Discipline. J Clin Oncol. 2004;22(24):4979–90.CrossRefPubMed
23.
go back to reference Butler G, Mathews A. Anticipatory anxiety and risk perception. Cognit Ther Res. 1987;11(5):551–65.CrossRef Butler G, Mathews A. Anticipatory anxiety and risk perception. Cognit Ther Res. 1987;11(5):551–65.CrossRef
24.
go back to reference Smits-Seemann RR, Yi J, Tian T, Warner EL, Kirchhoff AC. A qualitative inquiry of childhood and adolescent cancer survivors’ perspectives of independence. J Adolesc Young Adult Oncol. 6. Smits-Seemann RR, Yi J, Tian T, Warner EL, Kirchhoff AC. A qualitative inquiry of childhood and adolescent cancer survivors’ perspectives of independence. J Adolesc Young Adult Oncol. 6.
25.
go back to reference Schwartz L, Tuchman L, Hobbie W, Ginsberg JA. Social-ecological model of readiness for transition to adult-oriented care for adolescents and young adults with chronic health conditions. Child Care Health Dev. 2011;37(6):883–95.CrossRefPubMed Schwartz L, Tuchman L, Hobbie W, Ginsberg JA. Social-ecological model of readiness for transition to adult-oriented care for adolescents and young adults with chronic health conditions. Child Care Health Dev. 2011;37(6):883–95.CrossRefPubMed
26.
go back to reference Zebrack B, Bleyer A, Albritton K, Medearis S, Tang J. Assessing the health care needs of adolescent and young adult cancer patients and survivors. Cancer. 2006;107(12):2915–23.CrossRefPubMed Zebrack B, Bleyer A, Albritton K, Medearis S, Tang J. Assessing the health care needs of adolescent and young adult cancer patients and survivors. Cancer. 2006;107(12):2915–23.CrossRefPubMed
27.
go back to reference Zebrack B, Hamilton R, Smith, AW. Psychosocial outcomes and service use among young adults with cancer. Elsevier; 2009. p. 468–477. Zebrack B, Hamilton R, Smith, AW. Psychosocial outcomes and service use among young adults with cancer. Elsevier; 2009. p. 468–477.
28.
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
29.
go back to reference Smithson J. Using and analysing focus groups: limitations and possibilities. Int J Soc Res Methodol. 2000;3(2):103–19.CrossRef Smithson J. Using and analysing focus groups: limitations and possibilities. Int J Soc Res Methodol. 2000;3(2):103–19.CrossRef
30.
go back to reference Skolarus TA, Zhang Y, Hollenbeck BK. Understanding fragmentation of prostate cancer survivorship care. Cancer. 2012;118(11):2837–45.CrossRefPubMed Skolarus TA, Zhang Y, Hollenbeck BK. Understanding fragmentation of prostate cancer survivorship care. Cancer. 2012;118(11):2837–45.CrossRefPubMed
Metadata
Title
Barriers to follow-up care among survivors of adolescent and young adult cancer
Authors
Rochelle R. Smits-Seemann
Sapna Kaul
Eduardo R. Zamora
Yelena P. Wu
Anne C. Kirchhoff
Publication date
01-02-2017
Publisher
Springer US
Published in
Journal of Cancer Survivorship / Issue 1/2017
Print ISSN: 1932-2259
Electronic ISSN: 1932-2267
DOI
https://doi.org/10.1007/s11764-016-0570-3

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