Health related quality of life in children with cancer and chronic diseases

Year 2019, Volume: 44 Issue: 3, 875 - 881, 30.09.2019

Begül Yağcı-küpeli , Kudret Helin Akın Feyruz Usluoğlu , Serhan Küpeli

https://doi.org/10.17826/cumj.481607

Abstract

Purpose: Health related quality of life (HRQOL) concept is one of the major outcome measures in management of chronic diseases in children. Herein we aimed to review HRQOL by using PedsQL Generic Core Scales in children with cancer and chronic diseases.  

Materials and Methods: All patients with cancer under treatment (oncology group), attention deficit hyperactivity disorder (ADHD), nephrological disorders like recurrent urinary tract infections and other endocrinologic disorders such as precocious puberty and growth retardation and their parents who gave consent were included in the study. Turkish version of PedsQL 4.0 Generic Core Scales self and parent proxy-reports were used for all patients of 8-12 and 13-18 years of age.

Results: There were 48 children in oncology group; 44 in non-oncology group. The most common diagnoses were leukemia, non-Hodgkin lymphoma and brain tumors in the oncology group. Children reported significantly higher scores in the school subscale and physical functioning subscale, psychosocial functioning, and total scale scores in the non-oncology group compared to patients with cancer. A strong positive significant correlation was detected between all subscales except for social functioning scores of children and parents in child self-report and parent proxy-report correlations. 

Conclusion: Cancer is a devastating disease that impair functioning more than other chronic diseases in all areas of life of children and parents. PedsQL Genereric Core Scales is a usefull tool for evaluating HRQOL in both cancer and other chronic diseases.

Keywords

Health related quality of life, cancer, chronic diseases, children

Kanserli ve kronik hastalığı olan çocuklarda yaşam kalitesi

Abstract

Amaç: Sağlıkla ilişkili yaşam kalitesi (HRQOL) kavramı, çocuklarda kronik hastalıkların yönetiminde ana sonuç ölçütlerinden biridir. Bu yazıda, kanserli ve kronik hastalıklı çocuklarda PedsQL Jenerik Temel Skalası kullanılarak HRQOL'u gözden geçirmeyi amaçladık.

Gereç ve Yöntem: Tedavi altındaki tüm kanser hastaları (onkoloji grubu), dikkat eksikliği hiperaktivite bozukluğu (DEHB), tekrarlayan idrar yolu enfeksiyonları gibi nefrolojik bozukluklar ve erken ergenlik ve büyüme geriliği gibi diğer endokrinolojik bozukluklar ve onam veren ebeveynler çalışmaya dahil edildi. Çalışmada PedsQL 4.0 Jenerik Çekirdek Ölçeklerinin Türkçe versiyonu, 8-12 ve 13-18 yaşlarındaki tüm hastalar için kendi kendine ve ebeveyn raporları kullanıldı.

Bulgular: Onkoloji grubunda 48, onkolojik olmayan grupta 44 hasta vardı. En sık tanılar onkoloji grubunda lösemi, non-Hodgkin lenfoma ve beyin tümörleri idi. Onkoloji grubunda non-onkoloji grubundaki çocuklara göre okul alt ölçeği ve fiziksel işlev alt ölçeği, psikososyal fonksiyon ve toplam ölçek puanları anlamlı olarak yüksek bulundu. Çocuk öz-bildiriminde yer alan çocukların ve ebeveynlerin sosyal işlevsellik puanları ve anne rapor korelasyonları dışındaki tüm alt ölçekler arasında güçlü pozitif yönde anlamlı bir ilişki bulunmuştur.

Sonuç: Kanser, çocukların ve ebeveynlerin tüm yaşam alanlarında işleyişi diğer kronik hastalıklardan daha fazla bozan yıkıcı bir hastalıktır. PedsQL Jenerik Temel Skalası, hem kanser hem de diğer kronik hastalıklarda HRQOL'u değerlendirmek için yararlı bir araçtır. 

Keywords

Sağlıkla ilişkili yaşam kalitesi, kanser, kronik hastalıklar, çocuklar

References

• 1. Francis A, Didsbury MS, van Zwieten A, Chen K, James LJ, Kim S, et al. Quality of life of children and adolescents with chronic kidney disease: a cross-sectional study. Arch Dis Child. 2019;104:134-40.
• 2. Dotis J, Pavlaki A, Printza N, Stabouli S, Antoniou S, Gkogka C et al. Quality of life in children with chronic kidney disease. Pediatr Nephrol. 2016;31:2309-16.
• 3. Hamner T, Latzman RD, Latzman NE, Elkin TD, Majumdar S. Quality of life among pediatric patients with cancer: Contributions of time since diagnosis and parental chronic stress. Pediatr Blood Cancer. 2015;62:1232-6.
• 4. Sheng N, Ma J, Ding W, Zhang Y. Effects of caregiver-involved interventions on the quality of life of children and adolescents with chronic conditions and their caregivers: a systematic review and meta-analysis. Qual Life Res. 2019;28:13-33.
• 5. Pan HT, Wu LM, Wen SH. Quality of life and its predictors among children and adolescents with cancer. Cancer Nurs. 2017;40:343-51.
• 6. Yağci-Küpeli B, Akyüz C, Küpeli S, Büyükpamukçu M. Health-related quality of life in pediatric cancer survivors: a multifactorial assessment including parental factors. J Pediatr Hematol Oncol. 2012;34:194-9.
• 7. Schultz KA, Chen L, Kunin-Batson A, Chen Z, Woods WG, Gamis A et al. Health-related Quality of Life (HR-QOL) and Chronic Health Conditions in Survivors of Childhood Acute Myeloid Leukemia (AML) with Down Syndrome (DS): A Report From the Children's Oncology Group. J Pediatr Hematol Oncol. 2017;39:20-5.
• 8. Gupta P, Jalali R. Long-term survivors of childhood brain tumors: impact on general health and quality of life. Curr Neurol Neurosci Rep. 2017;17:99.
• 9. Batra A, Kumari M, Paul R, Patekar M, Dhawan D, Bakhshi S. Quality of life assessment in retinoblastoma: a cross-sectional study of 122 survivors from India. Pediatr Blood Cancer. 2016;63:313-7.
• 10. Nies M, Klein Hesselink MS, Huizinga GA, Sulkers E, Brouwers AH, Burgerhof JGM et al. Long-term quality of life in adult survivors of pediatric differentiated thyroid carcinoma. J Clin Endocrinol Metab. 2017;102:1218-26.
• 11. Kobayashi K, Nakagami-Yamaguchi E, Hayakawa A, Adachi S, Hara J, Tokimasa S, et al. Health-related quality of life in Japanese children with acute lymphoblastic leukemia during and after chemotherapy. Pediatr Int. 2017;59:145-53.
• 12. Takei Y, Ogata A, Ozawa M, Moritake H, Hirai K, Manabe A, Suzuki S. Psychosocial difficulties in adolescent and young adult survivors of childhood cancer. Pediatr. Int. 2015;57:239-46.
• 13. Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the Pediatric Quality of Life Inventory. Medical Care. 1999;37:126-39.
• 14. Varni JW, Seid M, Kurtin PS. The PedsQL 4.0: Reliability and validity of the Pediatric Quality of Life Inventory Version 4.0 Generic Core Scales in healthy and patient populations. Medical Care. 2001;39:800-12.
• 15. Varni JW, Seid M, Knight TS, Uzark K, Szer IS. The PedsQL 4.0 Generic Core Scales: Sensitivity, responsiveness, and impact on clinical decision-making. J Behav Med. 2002;25:175-93.
• 16. Varni JW, Burwinkle TM, Seid M, Skarr D. The PedsQL 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambul Pediatr. 2003;3:329-41.
• 17. Chan KS, Mangione-Smith R, Burwinkle TM, Rosen M, Varni JW. The PedsQL: Reliability and validity of the Short-Form Generic Core Scales and Asthma Module. Medical Care. 2005;43:56-65.
• 18. Varni JW, Limbers CA. The PedsQL 4.0 Generic Core Scales young adult version: Feasibility, reliability and validity in a university student population. J Health Psychol. 2009;14:611-22.
• 19. Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P. The PedsQL in pediatric cancer: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer. 2002;94:2090-106.
• 20. Çakın Memik N, Ağaoğlu B, Coşkun A, Karakaya I. Çocuklar için yaşam kalitesi ölçeğinin 13-18 yaş çocuk formunun geçerlik ve güvenirliği. Turk Psikiyatr Derg. 2007;18:353-63.
• 21. Çakın Memik N, Ağaoğlu B, Coşkun A, Üneri ÖŞ, Karakaya I. Çocuklar için yaşam kalitesi ölçeğinin 13-18 yaş ergen formunun geçerlik ve güvenirliği. Çocuk ve Gençlik Ruh Saglığı Dergisi. 2008;15:87-98.
• 22. Varni JW, Franciosi JP, Shulman RJ, Saeed S, Nurko S, Neigut DA, et al. PedsQL gastrointestinal symptoms scales and gastrointestinal worry scales in pediatric patients with inflammatory bowel disease in comparison with healthy controls. Inflamm Bowel Dis. 2015;21:1115-24.
• 23. Modi AC, Junger KF, Mara CA, Kellermann T, Barrett L, Wagner J Validation of the PedsQL Epilepsy Module: A pediatric epilepsy-specific health-related quality of life measure. Epilepsia. 2017;58:1920-30.
• 24. Nutakki K, Varni JW, Steinbrenner S, Draucker CB, Swigonski NL. Development of the pediatric quality of life inventory neurofibromatosis type 1 module items for children, adolescents and young adults: qualitative methods. J Neurooncol. 2017;132:135-43.
• 25. Thissen D, Varni JW, Stucky BD, Liu Y, Irwin DE, Dewalt DA. Using the PedsQL™ 3.0 asthma module to obtain scores comparable with those of the PROMIS pediatric asthma impact scale (PAIS). Qual Life Res. 2011;20:1497-505.
• 26. Varni JW, Curtis BH, Abetz LN, Lasch KE, Piault EC, Zeytoonjian AA. Content validity of the PedsQL™ 3.2 Diabetes Module in newly diagnosed patients with Type 1 diabetes mellitus ages 8-45.Qual Life Res. 2013;22:2169-81.
• 27. Yıldız Kabak V, Yakut Y, Çetin M, Düger T. Reliability and Validity of the Turkish version of the PedsQL 3.0 Cancer Module for 2- to 7-year-old and the PedsQL 4.0 Generic Core Scales for 5- to 7-year-old: The Hacettepe University Experience. Turk J Haematol. 2016 ;33:236-43.
• 28. Limbers CA, Ripperger-Suhler J, Heffer RW, Varni JW. Patient-reported Pediatric Quality of Life Inventory™ 4.0 Generic Core Scales in pediatric patients with attention-deficit/hyperactivity disorder and comorbid psychiatric disorders: feasibility, reliability, and validity. Value Health. 2011;14:521-30.
• 29. Varni JW, Limbers CA, Burwinkle TM. Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL 4.0 Generic Core Scales. Health Qual Life Outcomes. 2007;16;5:43.
• 30. Sprangers MAG, Aaronson NK: The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: A review. J Clin Epidemiol 1992;45:743-60.