nach oben

Erschienen in:

01.04.2016

Engagement and experience with cancer-related follow-up care among young adult survivors of childhood cancer after transfer to adult care

verfasst von: Dava Szalda, Lisa Pierce, Wendy Hobbie, Jill P. Ginsberg, Lauren Brumley, Monika Wasik, Yimei Li, Lisa A. Schwartz

Erschienen in: Journal of Cancer Survivorship | Ausgabe 2/2016

Einloggen, um Zugang zu erhalten

Abstract

Purpose

Young adult survivors (YAS) of childhood cancer require annual adult-focused, cancer-related follow-up given their risk for late effects of treatment. This study describes perception of and engagement with adult-focused, cancer-related follow-up care and general health care among YAS formally transferred to adult care from pediatric survivorship care.

Methods

YAS transferred from pediatric survivorship care in the prior 1–5 years completed measures indicating engagement with cancer-related follow-up care, other health care utilization, content of communication by providers, quality of cancer-related care, and satisfaction with health care in the prior year.

Results

Eighty YAS (M age = 27.7 years, M time since diagnosis = 10.4 years) participated. Just over half of YAS surveyed (n = 44, 55 %) endorsed continuing cancer-related follow-up care since transfer. Those with cancer-related follow-up endorsed seeing subspecialty survivorship providers (n = 16, 44 %) and primary care providers (n = 22, 50 %) or utilizing a shared care model (n = 6, 14 %). About a third of YAS endorsed seeing subspecialists (n = 29, 36 %) or using other support services (n = 22, 27 %). YAS-perceived content of communication varied significantly depending on care model with less cancer-related content being discussed by primary care providers, though perceived quality of cancer-related care and satisfaction with health care was generally favorable.

Conclusions

YAS report less than optimal engagement in cancer-related follow-up care and communication in their health care encounters.

Implications for Cancer Survivors

Young adult survivors should receive anticipatory guidance about expectations for delivery and content of adult-focused cancer-related follow-up care.

Beck Hopelessness Scale, The Post-Traumatic Stress Disorder Checklist-Civilian Version short form, the Family Assessment Device General Functioning Scale, NIH Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health short form, and transition readiness assessments (Transition Readiness Assessment Questionnaire and Transition Readiness Inventory)

Oeffinger KC, Mertens AC, Skylar CA, et al. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med. 2006;355:1572–82.CrossRefPubMed

Armstrong GT, Kawashima T, Leisenring W, et al. Aging and risk of severe, disabling, life-threatening and fatal events in the childhood cancer survivor study. J Clin Oncol. 2014;32(120):1218–27.CrossRefPubMedPubMedCentral

Hudson MM 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

Hewitt M, Greenfield S, Stovall E. From cancer patient to cancer survivor—lost in transition. Washington, DC: National Academies Press; 2005.

Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers. Children’s Oncology Group. 2008. www.survivorshipguidelines.org/

Nathan PC, Greenburg ML, Ness KK, et al. Medical care in long-term survivors of childhood cancer: a report from the childhood cancer survivorship study. J Clin Oncol. 2008;26(27):4401–9.CrossRefPubMedPubMedCentral

Oeffinger KC, Mertens AC, Hudson MM, et al. Health care of young adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Ann Fam Med. 2004;2(1):61–70.CrossRefPubMedPubMedCentral

Nathan PC, Hayes-Lattin B, Sisler JJ, Hudson MM. Critical issues in transition and survivorship for adolescents and young adults. Cancer. 2011;117:2335–41.CrossRefPubMed

Casillas J, Oeffinger KC, Hudson MM, et al. Identifying predictors of longitudinal decline in the level of medical care received by adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Health Services Research. 2015.

10.

Nottage K, Lanctot J, Li Z, et al. Long-term risk for subsequent leukemia after treatment for childhood cancer: a report from the Childhood Cancer Survivor Study. Blood. 2011;117(23):6315–8.CrossRefPubMedPubMedCentral

11.

Armstrong GT, Liu Q, Yasui Y, et al. Long-term outcomes among adult survivors of childhood central nervous system malignancies in the Childhood Cancer Survivor Study. J Natl Cancer Inst. 2009;101(13):946–58.CrossRefPubMedPubMedCentral

12.

Armenian SH, Sun CL, Kawashima T, et al. Long-term health-related outcomes in survivors of childhood cancer treated with hematopoietic cell transplantation versus conventional therapy: a report from the bone marrow transplant survivor study and the Childhood Cancer Survivor Study. Blood. 2011;118:1413–20.CrossRefPubMedPubMedCentral

13.

Laverdiere C, Liu Q, Yasui Y, et al. Long-term outcomes in survivors of neuroblastoma: a report from the Childhood Cancer Survivor Study. J Natl Cancer Inst. 2009;101(16):1131–40.CrossRefPubMedPubMedCentral

14.

Castellino SM, Geiger AM, Mertens AC, et al. Morbidity and mortality in long-term survivors of Hodgkin lymphoma: a report from the Childhood Cancer Survivor Study. Blood. 2011;117(6):1806–16.CrossRefPubMedPubMedCentral

15.

Kadan-Lottick NS, Zeltzer LK, Liu Q, et al. Neurocognitive functioning in adult survivors of childhood non-central nervous system cancers. J Natl Cancer Inst. 2010;102(12):881–93.CrossRefPubMedPubMedCentral

16.

Ellenberg L, Liu Q, Gioia G, et al. Neurocognitive status in long-term survivors of childhood CNS malignancies: a report from the Childhood Cancer Survivor Study. Neuropsychology. 2009;23(6):705–17.CrossRefPubMedPubMedCentral

17.

Stuber ML, Meeske KA, Krull KR, et al. Prevalence and predictors of posttraumatic stress disorder in adult survivors of childhood cancer. Pediatrics. 2010;125:1124–34.CrossRef

18.

Friedman DL, Freyer DR, Levitt GA. Models of care for survivors of childhood cancer. Pediatr Blood Cancer. 2006;46:159–68.CrossRefPubMed

19.

Singer S, Gianinazzi ME, Hohn A, Kuehni CE, Michel G. General practitioner involvement in follow-up of childhood cancer survivors: a systematic review. Pediatr Blood Cancer. 2013;60(10):1565–73.CrossRefPubMed

20.

McCabe MS, Partridge AH, Grunfeld E, et al. Risk-based health care, the cancer survivor, the oncologist, and the primary care physician. Semin Oncol. 2013;40(6):804–12.CrossRefPubMedPubMedCentral

21.

Boyle CA, Perrin JM, Moyer VA. Use of clinical preventive services in infants, children and adolescents. JAMA. 2014;312(15):1509–10.CrossRefPubMedPubMedCentral

22.

Brindis C, Park MJ, Ozer EM, Irwin Jr CE. Adolescents’ access to health services and clinical preventive healthcare: crossing the great divide. Pediatr Ann. 2002;31(9):575–81.CrossRefPubMed

23.

van Laar M, Glaser A, Phillips RS, Feltbower RG, Stark DP. The impact of a managed transition of care upon psychosocial characteristics and patient satisfaction in a cohort of adult survivors of childhood cancer. Psycho-Oncology. 2013;22(9):2039–45.CrossRefPubMed

24.

Harris PA, Taylor R, Thielke R, et al. Research electronic data capture (REDCap)—a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42(2):377–81.CrossRefPubMedPubMedCentral

25.

Kazak AE, Hocking MC, Ittenback RF, et al. A revision of the intensity of treatment rating scale: classifying the intensity of pediatric cancer treatment. Pediatr Blood Cancer. 2012;59(1):96–9.CrossRefPubMedPubMedCentral

26.

Smith AW, Parsons HM, Kent EE, et al. Unmet support service needs and health related quality of life among adolescents and young adults with cancer: the AYA HOPE study. Front Oncol. 2013;3:75.CrossRefPubMedPubMedCentral

27.

Keegan TH, Lichtensztajn DY, Kato I, 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

28.

Zebrack BJ, Ganz PA, Bernaards CA, Petersen L, Abraham L. Assessing the impact of cancer: development of a new instrument for long-term survivors. Psycho-Oncology. 15(5):407–21.

29.

DeRosa BW, Kazak AE, Doshi K, et al. Development and validation of the health competence beliefs inventory in young adults with and without a history of childhood cancer. Ann Behav Med. 2011;41(1):48–58.CrossRefPubMedPubMedCentral

30.

Reboltz C, Reulen R, Toogood A, et al. Healthcare use of long-term survivors of childhood cancer: the British Childhood Cancer Survivor Study. J Clin Oncol. 2011;29(31):4181–8.CrossRef

31.

Nathan PC, Daugherty CK, Wroblewski KE, et al. Family physician preferences and knowledge gaps regarding the care of adolescent and young adult survivors of childhood cancer. J Cancer Surviv. 2013;7(3):275–82.CrossRefPubMed

32.

Suh E, Daugherty CK, Wroblewski K, et al. General internists’ preferences and knowledge about the care of adult survivors of childhood cancer: a cross-sectional survey. Ann Intern Med. 2014;160(1):11–7.CrossRefPubMedPubMedCentral

33.

Tai-Seale M, McGuire T, Weimin Z. Time allocation in primary care office visits. Health Serv Res. 2007;42(5):1871–94.CrossRefPubMedPubMedCentral

34.

Shaw M, Davis S, Fleischer A, et al. The duration of office visits in the United States, 1993–2010. Am J Manag Care. 2014;20(10):820–6.PubMed

35.

Kadan-Lottick N, Robison LL, Gurney JG, et al. Childhood cancer survivors’ knowledge about their past diagnosis and treatment. JAMA. 2002;287:1832–9.CrossRefPubMed

36.

Patterson P, McDonald FE, Zebrack B, Medlow S. Emerging issues among adolescent and young adult cancer survivors. Semin Oncol Nurs. 2014;31(1):53–9.CrossRefPubMed

37.

Hill-Kayser CE, Vachani CC, Hampshire MK, Lullo G, Jacobs LA, Metz JM. Impact of internet-based cancer survivorship care plans on health care and lifestyle behaviors. Cancer. 2013;119(21):3854–60.CrossRefPubMed

38.

Hill-Kayser CE, Vachani C, Hampshire MK, Jacobs LA, Metz JM. An internet tool for creation of cancer survivorship care plans for survivors and health care providers: design, implementation, use and user satisfaction. J Med Internet Res. 2009; 11(3).

39.

Poplack DG, Fordis M, Landier W, Bhatia S, Hudson MM, Horowitz ME. Childhood cancer survivor care: development of the passport for care. Nat Rev Clin Oncol. 2014;11(12):740–50.CrossRefPubMed

40.

Williamson R, Meacham L, Cherven B, et al. Predictors of successful use of a web-based healthcare document storage and sharing system for pediatric cancer survivors: cancer SurvivorLinkTM. J Cancer Surviv. 2014;8(3):355–63.CrossRefPubMed

41.

Deline M. The CoC clarifies the survivorship care plan standard: what you need to know. 2014; http://www.advisory.com/research/oncology-roundtable/oncology-rounds/2014/09/the-coc-clarifies-the-survivorship-care-plan-standard-what-you-need-to-know, 2014

42.

Klemp JR. Survivorship care planning: one size does not fit all. Semin Oncol Nurs. 2015;31(1):67–72.CrossRefPubMed

43.

Bellon JA, Lardelli P, de Dios Luna J, et al. Validity of self reported utilization of primary care services in an urban population in Spain. J Epidemiol Community Health. 2000;54:544–51.CrossRefPubMedPubMedCentral

44.

Kessels RP. Patients’ memory for medical information. J R Soc Med. 2003;96:219–22.CrossRefPubMedPubMedCentral

45.

Kravitz RL, Hays RD, Sherbourne CD, et al. Recall of recommendations and adherence to advice among patients with chronic medical conditions. Arch Intern Med. 1993;153(16):1869–78.CrossRefPubMed

46.

Flocke SA, Stange KC. Direct observation and patient recall of health behavior advice. Prev Med. 2004;38(3):343–9.CrossRefPubMed

Titel: Engagement and experience with cancer-related follow-up care among young adult survivors of childhood cancer after transfer to adult care
verfasst von: Dava Szalda
Lisa Pierce
Wendy Hobbie
Jill P. Ginsberg
Lauren Brumley
Monika Wasik
Yimei Li
Lisa A. Schwartz
Publikationsdatum: 01.04.2016
Verlag: Springer US
Erschienen in: Journal of Cancer Survivorship / Ausgabe 2/2016
Print ISSN: 1932-2259
Elektronische ISSN: 1932-2267
DOI: https://doi.org/10.1007/s11764-015-0480-9

Springer Medizin

Engagement and experience with cancer-related follow-up care among young adult survivors of childhood cancer after transfer to adult care

Abstract

Purpose

Methods

Results

Conclusions

Implications for Cancer Survivors

Neu im Fachgebiet Onkologie

Adjuvante Immuntherapie verlängert Leben bei RCC

Alectinib verbessert krankheitsfreies Überleben bei ALK-positivem NSCLC

Bei Senioren mit Prostatakarzinom auf Anämie achten!

ICI-Therapie in der Schwangerschaft wird gut toleriert

Update Onkologie

Springer Medizin

Abstract

Purpose

Methods

Results

Conclusions

Implications for Cancer Survivors

Bitte loggen Sie sich ein, um Zugang zu diesem Inhalt zu erhalten

Weitere Artikel der Ausgabe 2/2016

Effects of radiation therapy on the structure and function of the pelvic floor muscles of patients with cancer in the pelvic area: a systematic review

Do we reach the patients with the most problems? Baseline data from the WebCan study among survivors of head-and-neck cancer, Denmark

Returning to work after sick leave due to cancer: a 365-day cohort study of Japanese cancer survivors

Surgical lung cancer patients’ views about smoking and support to quit after diagnosis: a qualitative study

Quality of working life of cancer survivors: development of a cancer-specific questionnaire

Social networks and social support for healthy eating among Latina breast cancer survivors: implications for social and behavioral interventions

Neu im Fachgebiet Onkologie

Adjuvante Immuntherapie verlängert Leben bei RCC

Alectinib verbessert krankheitsfreies Überleben bei ALK-positivem NSCLC

Bei Senioren mit Prostatakarzinom auf Anämie achten!

ICI-Therapie in der Schwangerschaft wird gut toleriert

Update Onkologie