Abstract
The increased survival rate has led to a greater importance of potential long-term sequelae, and to the interest and importance of survivorship. Even if all the complications of cancer and its treatment cannot be prevented, many of these can be early diagnosed and can be effectively treated. Such conditions include breast cancer complicating mediastinal radiotherapy during childhood or young adulthood; anthracycline heart disease; and osteoporosis or early menopause induced by chemotherapy and/or hormone therapy, frequently used for breast or prostate cancer, or during corticosteroid therapy. Early counseling and early screening can improve morbidity and mortality. With this aim in mind, several scientific societies developed recommendations for childhood cancer survivors and an effort is made to harmonize them. Psychological or psychosocial complications are less known, and less understood. After childhood cancer, real post-traumatic stress states were found long after the end of the illness. The social, educational, sexual, and fertility dimensions were also explored in relation to the quality of life. Fatigue is another frequent and complicated complication as it is not palpable but it significantly decreases the quality of life. In this article, we present the different traditional approaches about long-term follow-up care found in the literature.
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References
Rebholz CE, et al. Follow-up care amongst long-term childhood cancer survivors: a report from the Swiss childhood cancer survivor study. Eur J Cancer. 2011;47(2):221–9.
Berger C, et al. Long-term follow-up consultation after childhood cancer in the Rhone-Alpes region of France: feedback from adult survivors and their general practitioners. J Adolesc Young Adult Oncol. 2017;6:524.
Daly A, et al. Survivor clinic attendance among pediatric- and adolescent-aged survivors of childhood cancer. J Cancer Surviv. 2019;13(1):56–65.
Gatta G, et al. Survival of European children and young adults with cancer diagnosed 1995-2002. Eur J Cancer. 2009;45(6):992–1005.
Ward E, et al. Childhood and adolescent cancer statistics, 2014. CA Cancer J Clin. 2014;64(2):83–103.
Reulen RC, et al. Long-term cause-specific mortality among survivors of childhood cancer. JAMA. 2010;304(2):172–9.
Berger C, et al. Second malignant neoplasms following childhood cancer: a study of a recent cohort (1987-2004) from the childhood cancer registry of the Rhone-Alpes region (ARCERRA) in France. Pediatr Hematol Oncol. 2011;28(5):364–79.
Miller KD, et al. Cancer treatment and survivorship statistics, 2016. CA Cancer J Clin. 2016;66(4):271–89.
Miller KD, et al. Cancer treatment and survivorship statistics, 2019. CA Cancer J Clin. 2019;69(5):363–85.
Yeh JM, et al. A model-based estimate of cumulative excess mortality in survivors of childhood cancer. Ann Intern Med. 2010;152(7):409–17. W131-8
Yeh JM, et al. Life expectancy of adult survivors of childhood cancer over 3 decades. JAMA Oncol. 2020;6:350.
Oeffinger KC, et al. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med. 2006;355(15):1572–82.
Landier W, et al. Surveillance for late effects in childhood cancer survivors. J Clin Oncol. 2018;36(21):2216–22.
Friedman DL, et al. Subsequent neoplasms in 5-year survivors of childhood cancer: the childhood cancer survivor study. J Natl Cancer Inst. 2010;102(14):1083–95.
Jegu J, et al. The effect of patient characteristics on second primary cancer risk in France. BMC Cancer. 2014;14:94.
Moitry M, et al. Development of a model to predict the 10-year cumulative risk of second primary cancer among cancer survivors. Cancer Epidemiol. 2017;47:35–41.
Mulder RL, et al. Updated breast cancer surveillance recommendations for female survivors of childhood, adolescent, and young adult cancer from the international guideline harmonization group. J Clin Oncol. 2020:JCO2000562.
Keegan THM, et al. Second primary malignant neoplasms and survival in adolescent and young adult cancer survivors. JAMA Oncol. 2017;3(11):1554–7.
Demoor-Goldschmidt C, et al. Clinical and histological features of second breast cancers following radiotherapy for childhood and young adult malignancy. Br J Radiol. 2018;91(1086):20170824.
Visscher H, et al. Cardiovascular and pulmonary challenges after treatment of childhood cancer. Pediatr Clin N Am. 2020;67(6):1155–70.
Marcucci G, et al. Bone health in childhood cancer: review of the literature and recommendations for the management of bone health in childhood cancer survivors. Ann Oncol. 2019;30(6):908–20.
Noonan EM, Farrell TW. Primary care of the prostate cancer survivor. Am Fam Physician. 2016;93(9):764–70.
Han JW, et al. Poor bone health at the end of puberty in childhood cancer survivors. Pediatr Blood Cancer. 2015;62(10):1838–43.
Hill DA, et al. Long-term risk of medical conditions associated with breast cancer treatment. Breast Cancer Res Treat. 2014;145(1):233–43.
Bagur J, et al. Psychiatric disorders in 130 survivors of childhood cancer: preliminary results of a semi-standardized interview. Pediatr Blood Cancer. 2015;62(5):847–53.
Abadie A, et al. Prevalence of psychiatric complications in young adults after childhood cancer treatment: results of the long-term follow-up studies in oncology. J Adolesc Young Adult Oncol. 2020;9(2):247–55.
Daniel LC, et al. Sleep, emotional distress, and physical health in survivors of childhood cancer: a report from the childhood cancer survivor study. Psychooncology. 2019;28(4):903–12.
Michel G, et al. The long-term impact of cancer: evaluating psychological distress in adolescent and young adult cancer survivors in Switzerland. Psychooncology. 2019;28(3):577–85.
Barrera M, et al. Educational and social late effects of childhood cancer and related clinical, personal, and familial characteristics. Cancer. 2005;104(8):1751–60.
Dumas A, et al. Educational and occupational outcomes of childhood cancer survivors 30 years after diagnosis: a French cohort study. Br J Cancer. 2016;114(9):1060–8.
Thouvenin-Doulet S, et al. Fecundity and quality of life of women treated for solid childhood tumors between 1948 and 1992 in France. J Adolesc Young Adult Oncol. 2018;7:415.
Vuksanovic D, et al. Unmet needs in breast cancer survivors are common, and multidisciplinary care is underutilised: the survivorship needs assessment project. Breast Cancer. 2020;28:289.
Gallego A, et al. Cancer survivors referred to a long-term survivorship outpatient service within academic medical oncology: descriptive study. J Cancer Surviv. 2020;
Fervaha G, et al. Psychological morbidity associated with prostate cancer: rates and predictors of depression in the RADICAL PC study. Can Urol Assoc J. 2020;
Ver Hoeve ES, et al. Patient-reported financial toxicity, quality of life, and health behaviors in insured US cancer survivors. Support Care Cancer. 2021;29(1):349–58.
Martin E, et al. A qualitative evaluation of the use of interventions to treat fatigue among cancer survivors: a healthcare provider's view. Eur J Cancer Care (Engl). 2020:e13370.
Vannorsdall TD, et al. Interventions for multidimensional aspects of breast cancer-related fatigue: a meta-analytic review. Support Care Cancer. 2020;29:1753.
Cohen M, et al. Low physical activity, fatigue and depression in breast cancer survivors: moderation by levels of IL-6 and IL-8. Int J Psychophysiol. 2020;158:96–102.
Schmidt ME, et al. Prevalence and severity of long-term physical, emotional, and cognitive fatigue across 15 different cancer entities. Cancer Med. 2020;9(21):8053–61.
van Deuren S, et al. Fatigue-related cognitive-behavioral factors in survivors of childhood cancer: comparison with chronic fatigue syndrome and survivors of adult-onset cancer. J Adolesc Young Adult Oncol. 2020;10:92.
Sterba KR, et al. Evaluation of a survivorship needs assessment planning tool for head and neck cancer survivor-caregiver dyads. J Cancer Surviv. 2019;13(1):117–29.
Lokich E. Gynecologic cancer survivorship. Obstet Gynecol Clin N Am. 2019;46(1):165–78.
Pfaendler KS, et al. Cervical cancer survivorship: long-term quality of life and social support. Clin Ther. 2015;37(1):39–48.
Wenzel LB, et al. Resilience, reflection, and residual stress in ovarian cancer survivorship: a gynecologic oncology group study. Psychooncology. 2002;11(2):142–53.
Choi Y, et al. The Johns Hopkins Primary Care for Cancer Survivor Clinic: lessons learned in our first 4 years. J Cancer Surviv. 2020;14(1):19–25.
Signorelli C, et al. Models of childhood cancer survivorship care in Australia and New Zealand: strengths and challenges. Asia Pac J Clin Oncol. 2017;13(6):407–15.
Taylor A, et al. Long-term follow-up of survivors of childhood cancer in the UK. Pediatr Blood Cancer. 2004;42(2):161–8.
Oeffinger KC, et al. Programs for adult survivors of childhood cancer. J Clin Oncol. 1998;16(8):2864–7.
Stewart TP, et al. Results of engineering, primary care, oncology collaborative regarding a survey of primary care on a re-engineered survivorship care plan. J Cancer Educ. 2020;
Ducassou S, et al. Impact of shared care program in follow-up of childhood cancer survivors: an intervention study. Pediatr Blood Cancer. 2017;64:11.
Kozul C, et al. Breast cancer survivor symptoms: a comparison of physicians' consultation records and nurse-led survivorship care plans. Clin J Oncol Nurs. 2020;24(3):E34–42.
Berger C, et al. Objectives and organization for the long-term follow-up after childhood cancer. Bull Cancer. 2015;102(7–8):579–85.
Michel G, et al. Evidence-based recommendations for the organization of long-term follow-up care for childhood and adolescent cancer survivors: a report from the PanCareSurFup Guidelines Working Group. J Cancer Surviv. 2019;13(5):759–72.
Bhatia S, Meadows AT. Long-term follow-up of childhood cancer survivors: future directions for clinical care and research. Pediatr Blood Cancer. 2006;46(2):143–8.
Blaauwbroek R, et al. Shared care by paediatric oncologists and family doctors for long-term follow-up of adult childhood cancer survivors: a pilot study. Lancet Oncol. 2008;9(3):232–8.
Singer S, et al. General practitioner involvement in follow-up of childhood cancer survivors: a systematic review. Pediatr Blood Cancer. 2013;60(10):1565–73.
Heirs M, et al. A systematic review of models of care for the follow-up of childhood cancer survivors. Pediatr Blood Cancer. 2013;60(3):351–6.
Hudson MM, et al. A model of care for childhood cancer survivors that facilitates research. J Pediatr Oncol Nurs. 2004;21(3):170–4.
McClellan W, et al. A collaborative step-wise process to implementing an innovative clinic for adult survivors of childhood cancer. J Pediatr Nurs. 2015;30(5):e147–55.
Eshelman D, et al. Facilitating care for childhood cancer survivors: integrating children's oncology group long-term follow-up guidelines and health links in clinical practice. J Pediatr Oncol Nurs. 2004;21(5):271–80.
Eshelman-Kent D, et al. Cancer survivorship practices, services, and delivery: a report from the children's oncology group (COG) nursing discipline, adolescent/young adult, and late effects committees. J Cancer Surviv. 2011;5(4):345–57.
Demoor-Goldschmidt C, et al. Long-term follow-up after childhood cancer in France supported by the SFCE-force and weakness-current state, results of a questionnaire and perspectives. Br J Radiol. 2018;91(1084):20170819.
Skinner R, Wallace WH, Levitt G. Long-term follow-up of children treated for cancer: why is it necessary, by whom, where and how? Arch Dis Child. 2007;92(3):257–60.
Mulder RL, et al. The critical role of clinical practice guidelines and indicators in high-quality survivorship after childhood cancer. Pediatr Clin N Am. 2020;67(6):1069–81.
Gebauer J, et al. Guidelines for long-term follow-up after childhood cancer: practical implications for the daily work. Oncol Res Treat. 2020;43(3):61–9.
Janss AJ, Mazewski C, Patterson B. Guidelines for treatment and monitoring of adult survivors of pediatric brain Tumors. Curr Treat Options in Oncol. 2019;20(1):10.
Clemens E, et al. Recommendations for ototoxicity surveillance for childhood, adolescent, and young adult cancer survivors: a report from the international late effects of childhood cancer guideline harmonization group in collaboration with the PanCare consortium. Lancet Oncol. 2019;20(1):e29–41.
Campbell KL, et al. Exercise guidelines for cancer survivors: consensus statement from international multidisciplinary roundtable. Med Sci Sports Exerc. 2019;51(11):2375–90.
Springfield S, et al. Adherence to American Cancer Society and American Institute of Cancer Research dietary guidelines in overweight African American breast cancer survivors. J Cancer Surviv. 2019;13(2):257–68.
Skinner R, Oeffinger KC. Developing international consensus for late effects screening and guidance. Curr Opin Support Palliat Care. 2013;7(3):303–8.
Kremer LC, et al. A worldwide collaboration to harmonize guidelines for the long-term follow-up of childhood and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group. Pediatr Blood Cancer. 2013;60(4):543–9.
Freyer DR, Brugieres L. Adolescent and young adult oncology: transition of care. Pediatr Blood Cancer. 2008;50(5 Suppl):1116–9.
Donohue S, et al. Cancer survivorship care plan utilization and impact on clinical decision-making at point-of-care visits with primary care: results from an Engineering, Primary Care, and Oncology Collaborative for Survivorship Health. J Cancer Educ. 2019;34(2):252–8.
Cox CL, et al. Increasing cardiomyopathy screening in childhood cancer survivors: a cost analysis of advanced practice nurse phone counseling. Oncol Nurs Forum. 2016;43(6):E242–50.
Rajala S, et al. Use of electronic patient data storage for evaluating and setting the risk category of late effects in childhood cancer survivors. Pediatr Blood Cancer. 2020:e28678.
Raj SP, et al. Development of a web-based psychosocial intervention for adolescent and young adult survivors of pediatric brain tumor. J Adolesc Young Adult Oncol. 2018;7(2):187–95.
Williamson R, et al. Predictors of successful use of a web-based healthcare document storage and sharing system for pediatric cancer survivors: cancer SurvivorLink. J Cancer Surviv. 2014;8(3):355–63.
Sharp LK, et al. Electronic personal health records for childhood cancer survivors: an exploratory study. J Adolesc Young Adult Oncol. 2014;3(3):117–22.
Williamson RS, et al. Meaningful use of an electronic personal health record (ePHR) among pediatric cancer survivors. Appl Clin Inform. 2017;8(1):250–64.
Fang SY, et al. Long-term effectiveness of an E-based survivorship care plan for breast cancer survivors: a quasi-experimental study. Patient Educ Couns. 2020;103(3):549–55.
Smith KC, et al. Comparing web-based provider-initiated and patient-initiated survivorship care planning for cancer patients: a randomized controlled trial. JMIR Cancer. 2016;2(2):e12.
Dyer G, et al. What they want: inclusion of blood and marrow transplantation survivor preference in the development of models of care for long-term health in Sydney, Australia. Biol Blood Marrow Transplant. 2016;22(4):731–43.
Hahn T, et al. Ascertainment of unmet needs and participation in health maintenance and screening of adult hematopoietic cell transplantation survivors followed in a formal survivorship program. Biol Blood Marrow Transplant. 2017;23(11):1968–73.
McCallum M, et al. Supportive care needs after gynecologic cancer: where does sexual health fit in? Oncol Nurs Forum. 2014;41(3):297–306.
Trotter K, et al. Innovation in survivor care: group visits. Clin J Oncol Nurs. 2011;15(2):E24–33.
Signorelli C, et al. The impact of long-term follow-up care for childhood cancer survivors: a systematic review. Crit Rev Oncol Hematol. 2017;114:131–8.
Ganju RG, et al. The effect of transition clinics on knowledge of diagnosis and perception of risk in young adult survivors of childhood cancer. J Pediatr Hematol Oncol. 2016;38(3):197–201.
Essig S, et al. Follow-up programs for childhood cancer survivors in Europe: a questionnaire survey. PLoS One. 2012;7(12):e53201.
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Berger, C., Demoor-Goldschmidt, C. (2021). Models of Long-Term Follow-up for Cancer Patients: From Children to Adults, from Simple to Multi-Modal. In: Rauh, S. (eds) Survivorship Care for Cancer Patients. Springer, Cham. https://doi.org/10.1007/978-3-030-78648-9_5
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