Long-Term Follow-Up of Childhood Cancer Survivors and Nurse’s Role

Öz

Five year survival rates have greatly increased in childhood cancer and maintaining physical and psychosocial health of survivors has come to the fore in long-term. Survivors face many problems related to cancer itself and treatment exposure. Cardiac, endocrine, neurological, cognitive, psychological and social late effects, which may occur even years after the completion of treatment, may cause significant limitations in their life. With long-term follow-up, it is aimed to prevent and early detect the late effects, to meet the physical and psychosocial needs of the child, to help them for adaptation to social life, and to provide a healthy lifestyle advice to protect the child from secondary cancer risks. In order to following the survivors effectively, it should be based on evidence-based approaches and carried out by a multidisciplinary team. The pediatric nurses play an important role in providing holistic and family-centered care in long-term follow-up of childhood cancer survivors. The nurse ensures survivors’ needs with the individualized care plans based on the standard guidelines. In this article, the importance and the scope of the follow-up and the role of the nurse in the follow-up were discussed. 

Anahtar Kelimeler

• Chidhood Cancer
• Survivorship
• Long-term Follow-up
• Late Effects
• Nursing.

Çocukluk Çağı Kanserlerinden Sağ Kalanların İzlemi ve Pediatri Hemşiresinin Rolü

Öz

Çocukluk çağı kanserlerinde 5 yıllık sağkalım oranları önemli ölçüde artmış ve sağ kalanların fiziksel ve psikososyal sağlığının sürdürülmesi ön plana çıkmıştır. Sağ kalan çocuk ve adölesanlar uzun dönemde kanserin kendisi ve tedavi maruziyetine bağlı birçok sorunla karşılaşmaktadır. Tedavinin tamamlanmasından yıllar sonra dahi ortaya çıkabilen kardiyak, endokrin, nörolojik, bilişsel, psikolojik ve sosyal geç etkiler sağ kalanların yaşamında önemli kısıtlılıklara neden olabilmektedir. Uzun süreli izlemler ile geç etkilerin önlenmesi ve erken dönemde saptanması, çocuğun fiziksel ve psikososyal gereksinimlerinin karşılanması, çocuk ve ailenin sosyal yaşama uyumu ve çocuğun ikincil risklerden korunması için sağlıklı yaşam tarzının kazandırılması amaçlanmaktadır. İzlemlerin etkin bir şekilde sürdürülmesi için kanıt temelli yaklaşımlara dayandırılması ve multidisipliner ekip tarafından yürütülmesi gerekmektedir. Sağ kalanlara uzun dönemde bütüncül ve aile merkezli bakımın sunulmasında pediatri hemşiresi önemli role sahiptir. Hemşire standart rehberler ışığında oluşturduğu bireyselleştirilmiş bakım planlarıyla sağ kalanların gereksinimlerinin karşılanmasını sağlamaktadır. Bu makalede çocukluk çağı kanserlerinden sağ kalanlarda izlemin önemi, kapsamı ve izlemlerde hemşirenin rolü ele alınmıştır.

Anahtar Kelimeler

• Çocukluk çağı kanserleri
• sağkalım
• uzun süreli izlem
• geç etkiler
• hemşirelik

Kaynakça

1. 1. Lown E, Phillips F, Schwartz LA, Rosenberg AR, Jones B. Psychosocial follow‐up in survivorship as a standard of care in pediatric oncology. Pediatr Blood Cancer 2015; 62(S5): S514-S584.
2. 2. Children’s Oncology Group. Long-term follow-up guidelines for survivors of childhood, adolescent and young adult cancers, version 5.0. Monrovia, CA: Children’s Oncology Group; 2018. Available from: http://www.survivorshipguidelines.org/pdf/2018/COG_LTFU_Guidelines_v5.pdf
3. 3. American Cancer Society (2020). Cancer facts & figures. Available from: https://www.cancer.org/research/cancer-facts-statistics/all-cancer-facts-figures/cancer-facts-figures-2020.html
4. 4. Kutluk MT, Yesilipek A. Turkish National Pediatric Cancer Registry 2002-2008 (Turkish Pediatric Oncology Group and Turkish Pediatric Hematology Society). J Clin Oncoly 2013; 31(15_suppl): 10067 (abstr).
5. 5. Armstrong GT, Chen Y, Yasui Y, Leisenring W, Gibson TM, Mertens AC, et al. (2016). Reduction in late mortality among 5-year survivors of childhood cancer. New England Journal of Medicine, 374(9), 833-842.
6. 6. Langer T, Grabow D, Steinmann D, Wörmann B, Calaminus G. Late effects and long-term follow-up after cancer in childhood. Oncol Res Treat 2017; 40(12): 746-750.
7. 7. Gibson TM, Li C, Armstrong GT, Srivastava DK, Leisenring WM, Mertens A, et al. Perceptions of future health and cancer risk in adult survivors of childhood cancer: A report from the Childhood Cancer Survivor Study. Cancer, 2018; 124(16): 3436-3444.
8. 8. Essig S, Li Q, Chen Y, Hitzler J, Leisenring W, Greenberg M, et al. Estimating the risk for late effects of therapy in children newly diagnosed with standard risk acute lymphoblastic leukemia using an historical cohort: A report from the Childhood Cancer Survivor Study. Lancet Oncol 2014; 15(8): 841-51.

9. 9. Bhakta N, Liu Q, Ness KK, Baassiri M, Eissa H, Yeo F, et al. The cumulative burden of surviving childhood cancer: an initial report from the St Jude Lifetime Cohort Study (SJLIFE). Lancet, 2017; 390(10112): 2569-2582.
10. 10. Arpaci T, Toruner, EK. Assessment of problems and symptoms in survivors of childhood acute lymphoblastic leukaemia. Eur J Cancer Care 2016; 25(6): 1034-1043.
11. 11. Bitsko MJ, Cohen D, Dillon R, Harvey J, Krull K, Klosky JL. Psychosocial late effects in pediatric cancer survivors: A report from the Children's Oncology Group. Pediatr Blood Cancer, 2016; 63(2): 337-343.
12. 12. Arpaci T, Toruner EK. Quality of life in survivors of childhood cancer: Literature review/Kanserden sag kalan cocuklarda yasam kalitesi: Literatur taramasi. Journal of Education and Research in Nursing, 2017; 14(1): 86-93.
13. 13. Kızmazoğlu D, Sarı S, Evim SM, Kantarcıoğlu A, Tüfekçi Ö, Demir YF, et al. Assessment of health-related quality of life in pediatric acute lymphoblastic leukemia survivors: Perceptions of Children, Siblings, and Parents. Turk J Haematol 2019; 36(2): 112-116.
14. 14. Brinkman TM, Recklitis CJ, Michel G, Grootenhuis MA, Klosky JL. Psychological symptoms, social outcomes, socioeconomic attainment, and health behaviors among survivors of childhood cancer: current state of the literature. J Clin Oncol 2018; 36(21): 2190.
15. 15. Kosir U, Wiedemann M, Wild J, Bowes L. Psychiatric disorders in adolescent cancer survivors: A systematic review of prevalence and predictors. Cancer Rep 2019; 2(3): e1168.
16. 16. Yi J, Kim MA, Hong JS, Akter J. Childhood cancer survivors' experiences in school re-entry in South Korea: Focusing on academic problems and peer victimization. Child Youth Serv Rev, 2016; 67: 263-269.
17. 17. An H, Lee S. Difficulty in returning to school among adolescent leukemia survivors: A qualitative descriptive study. Eur J Oncol Nurs 2019; 38: 70-75.
18. 18. Kim Y, Lee KS, Koh KN. Difficulties faced by long-term childhood cancer survivors: A qualitative study. Eur J Oncol Nurs 2018; 36: 129-134.
19. 19. Smith WA, Li C, Nottage KA, Mulrooney DA, Armstrong GT, Lanctot JQ, et al. Lifestyle and metabolic syndrome in adult survivors of childhood cancer: a report from the St. Jude Lifetime Cohort Study. Cancer 2014; 120(17): 2742-2750.
20. 20. Paxton RJ, Jones LW, Rosoff PM, Bonner M, Ater JL, Demark‐Wahnefried W. Associations between leisure‐time physical activity and health‐related quality of life among adolescent and adult survivors of childhood cancers. Psychooncology, 2010; 19(9): 997-1003.
21. 21. Tonorezos ES, Robien K, Eshelman-Kent D, Moskowitz CS, Church TS, Ross R, et al. Contribution of diet and physical activity to metabolic parameters among survivors of childhood leukemia. Cancer Causes Control 2013; 24(2): 313-321.
22. 22. Tylavsky FA, Smith K, Surprise H, Garland S, Yan X, McCammon E, et al. Nutritional intake of long‐term survivors of childhood acute lymphoblastic leukemia: evidence for bone health interventional opportunities. Pediatr Blood Cancer 2010; 55(7), 1362-1369.
23. 23. Rebholz CE, Kuehni CE, Strippoli MPF, Rueegg CS, Michel G, Hengartner H, et al. Alcohol consumption and binge drinking in young adult childhood cancer survivors. Pediatr Blood Cancer, 2012; 58(2): 256-264.
24. 24. Klosky JL, Howell CR, Li Z, Foster RH, Mertens AC, Robison LL, et al. Risky health behavior among adolescents in the childhood cancer survivor study cohort. J Pediatr Psychol 2012; 37(6): 634-646.
25. 25. Kopp LM, Gastelum Z, Guerrero CH, Howe CL, Hingorani P, Hingle M. Lifestyle behavior interventions delivered using technology in childhood, adolescent, and young adult cancer survivors: a systematic review. Pediatr Blood Cancer 2017; 64(1): 13-17.
26. 26. Landier W, Skinner R, Wallace WH, Hjorth L, Mulder RL, Wong FL, et al. Surveillance for late effects in childhood cancer survivors. J Clin Oncoly 2018; 36(21): 2216.
27. 27. Uzun Dönem İzlem Rehberi, UDİR, 2020. Türk Pediatrik Onkoloji Grubu Derneği. Son erişim tarihi: 20.08.2020 http://www.tpog.org.tr/uploads/Link_1_Onsoz_UDiR_Yan_Etki_Izlemi2.pdf
28. 28. Signorelli C, Wakefield CE, Fardell JE, Wallace WHB, Robertson EG, McLoone JK, et al. The impact of long-term follow-up care for childhood cancer survivors: A systematic review. Crit Rev Oncol Hematol 2017; 114: 131-138.
29. 29. Essig S, Skinner R, von der Weid NX, Kuehni CE, Michel G. follow-up programs for childhood cancer survivors in Europe: A Questionnaire Survey. PLoS ONE, 2012; 7(12): e53201.
30. 30. 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: 1565-1573.
31. 31. Landier W. Establishing and enhancing services for childhood cancer survivors: long-term follow-up program resource guide. Children's Oncology Group; Arcadia, CA; 2007. Available from: http://www.survivorshipguidelines.org/pdf/ltfuresourceguide.pdf
32. 32. American Academy of Pediatrics Section on Hematology/Oncology Children's Oncology Group. Long-term follow-up care for pediatric cancer survivors. Pediatrics 2009; 123(3): 906-915.
33. 33. Frey E, van der Pal H. Transitional care of a childhood cancer survivor to adult services: facilitating the process of individual access to different models. Curr Opin Support Palliat Care 2013; 7(3): 309-313.
34. 34. Heirs M, Suekarran S, Slack R, Light K, Gibson F, Glaser, et al. A systematic review of models of care for the follow‐up of childhood cancer survivors. Pediatr Blood Cancer 2013; 60(3): 351-356.
35. 35. Özdemir Sİ, Taçyildiz N, Varan A, Kebudi R, Zülfikar OB, Celkan T, et al. Cross-sectional study: long term follow-up care for pediatric cancer survivors in a developing country; Turkey: current status, challenges and future perspectives. Turk J Med Sci 2020 Jul 6. doi: 10.3906/sag-1911-193. Epub ahead of print. PMID: 32628434.
36. 36. Tacyildiz N, Ozdemir SI, Unal EC, Dincaslan H, Yavuz G. Barriers and solutions of long-term follow up of childhood cancer survivors in Turkey: A questionaire survey. J Clin Oncol 2017; 35(15_suppl): e22020.
37. 37. Hobbie WL. The role of Pediatric Oncology Nurse Specialist in a Follow-up Clinic for Long-term Survivors of Childhood Cancer. J Assoc Pediatr Oncol Nurses 1986; 3(4): 9-12.
38. 38. Hydeman JA, Uwazurike OC, Adeyemi EI, Beaupin LK. Survivorship needs of adolescent and young adult cancer survivors: a concept mapping analysis. J Cancer Surviv 2019; 13(1): 34-42.
39. 39. Ford JS, Chou JF, Sklar CA. Attendance at a survivorship clinic: impact on knowledge and psychosocial adjustment. J Cancer Surviv 2013; 7(4): 535-43.
40. 40. Kim DH, Yoo IY. Factors associated with resilience of school age children with cancer. J Paediatr Child Health 2010; 46(7‐8): 431-436.
41. 41. Keene N, Hobbi, W, Ruccione K. Survivorship. Childhood cancer survivors: A practical guide to your future (3rd ed.). Bellingham, WA: Childhood Cancer Guides; 2012. p. 1-27.
42. 42. Mertens AC, Brand S, Ness KK, Li Z, Mitby PA, Riley A, et al. Health and well-being in adolescent survivors of early childhood cancer: a report from the Childhood Cancer Survivor Study. Psychooncology, 2014; 23(3): 266-275.
43. 43. Michel G, Kuehni CE, Rebholz CE, Zimmermann K, Eiser C, Rueegg CS, et al. Can health beliefs help in explaining attendance to follow-up care? The Swiss childhood cancer survivor study. Psychooncology 2011; 20(10): 1034-43.
44. 44. Vetsch J, Rueegg CS, Mader L, Bergstraesser E, Rischewski J, Kuehni CE, et al. Follow-up care of young childhood cancer survivors: attendance and parental involvement. Support Care Cancer, 2016; 24(7): 3127-38.
45. 45. Lupatsch JE, Wengenroth L, Rueegg CS, Teuffel O, Gumy-Pause F, Kuehni CE, et al. Follow-up care of adolescent survivors of childhood cancer: The role of health beliefs. Pediatr Blood Cancer, 2016; 63(2): 318-325.
46. 46. Shepherd EJ, Woodgate RL. Cancer survivorship in children and young adults: a concept analysis. J Pediatr Oncol Nurs 2010; 27(2): 109-118.
47. 47. Haupt R, Essiaf S, Dellacasa C, Ronckers CM, Caruso S, Sugden E, et al. The 'Survivorship Passport' for childhood cancer survivors. Eur J Cancer 2018; 102: 69-81.
48. 48. Signorelli C, Wakefield CE, Johnston KA, Fardell JE, Brierley MEE, Thornton-Benko, et al. ‘Re-engage’pilot study protocol: a nurse-led eHealth intervention to re-engage, educate and empower childhood cancer survivors. BMJ open, 2018; 8(4): e022269.
49. 49. Bouwman E, Hermens RP, Blijlevens NM, Prins JB, Loonen JJ. Nurse-led video-coaching interventions in childhood, adolescent and young adult cancer survivors (REVIVER): a protocol for mixed methods feasibility research. Pilot Feasibility Stud 2019; 5(1): 150.
50. 50. Toruner EK, Altay N. New trends and recent care approaches in pediatric oncology nursing. Asia Pac J Oncol Nurs 2018; 5(2): 156.