Health-related Quality of Life in Pediatric Cancer Survivors: A Multifactorial Assessment Including Parental Factors Begu ¨l Yag ˘c{-Ku ¨peli, MD, MSc, Canan Akyu ¨z, MD, Serhan Ku ¨peli, MD, MSc, and Mu ¨nevver Bu ¨yu ¨kpamukc¸u, MD Aim: We aimed to evaluate the health-related quality of life (HRQOL) and the effect of associated factors such as cancer type, treatment strategies, sex, age, and parental factors like education and psychopathology in pediatric cancer survivors and make a com- parison with healthy children. Patients and Methods: “Pediatric Quality of Life Inventory (PedsQL) 4.0 TM, Generic Core Scale” for children and parents, and “Brief Symptom Inventory” for parents were used. Three hundred and two survivors without major mental or motor deficit and 272 healthy controls of 8 to 18 years of age were enrolled to study. Results: Comparison of scores according to child self-report be- tween survivor and control groups revealed lower points in physical and school subscale of survivor group (P < 0.01 and P < 0.001, respectively). Female survivors had reported significantly worse HRQOL in physical and emotional subscales of PedsQL than male survivors (P < 0.001). Female survivors of Z16 years of age had reported worse scores in school subscale than females of younger age groups and male survivors of same age group. Parents of con- trol group reported better results in school subscales (P < 0.001) and social functioning subscales (P < 0.05) than parents of survivor group. Brief Symptom Inventory score had significant effect on child self-report and parent proxy-report of physical functioning (P < 0.001), emotional functioning (P < 0.001), social functioning (P < 0.001), and school subscales (P < 0.001) of PedsQL. Sig- nificantly better scores of physical functioning subscale in the sur- vivors whose parents are university graduate than the survivors whose parents are primary school graduate were detected (P <0.001). The survivors with central nervous system tumors had reported lower scores in the social, emotional, physical, and school functioning subscales of PedsQL than patients with non-Hodgkin and Hodgkin lymphoma (P < 0.001). Child self-report school subscale scores were lower in survivors treated with radiotherapy in combination or as sole therapy than survivors in whom radio- therapy was not given (P < 0.001). Conclusions: Our study has provided evidence about less-studied determinants of HRQOL like parental factors such as psycho- pathology or educational level in childhood cancer survivors. Future research can build on this evidence to obtain additional factors other than well-known medical and treatment-related factors. Key Words: health-related quality of life, cancer, children, survivor, PedsQL, parental factors (J Pediatr Hematol Oncol 2012;34:194–199) W ith the improvement of survival rates in childhood cancer, the primary endpoint in pediatric oncology has expanded beyond measures of survival resulting in emergence of quality of life (QOL) concept. The principal aim of the cancer treatment had been saving the patient’s life 50 years ago. Today, contemporary cancer therapy aims to prevent acute and chronic life-threatening toxic effects in addition to survival. In this context, concept of QOL and health-related quality of life (HRQOL) began to be men- tioned more than any time. QOL is defined by individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns. 1 HRQOL is defined as a multidimensional concept involving physical, emotional, mental, and social well being as well as perception of the effects caused by disease and its treatment. 2 Evaluation of QOL in adults is a well-known subject that is commonly included in many clinical trials. However, measurement of QOL in children and adolescents is a more sophisticated process. Assessment of QOL in children dif- fers in distinct age groups as a result of different devel- opmental stages. Cognitive and language development are the most important factors to be considered in this evalu- ation. Perception of illness and its treatment by children vary according to age. Alternative measurement methods and parent proxy reports may be necessary in young chil- dren. Self-reports can be used in certain age groups. 3 To date, most of the studies have focused on adult survivors rather than child and adolescent survivors or study groups consisted both adult and adolescent survivors lacking appropriate control groups. 4–7 An important challenge in QOL measurement in sur- vivors of childhood cancer is identifying the factors that have direct or indirect effects on concept of QOL. Well known and largely studied factors are cancer type, treatment, and treatment-related symptoms. 8–15 Other less studied but important factors affecting QOL in child- hood cancer survivors are individual characteristics of child and family. 16 Studied child factors were reported as age at diagnosis, age at QOL assessment, sex, and ethnicity. 17–19 Parental health, symptoms of anxiety, de- pression, and psychological distress were found to be asso- ciated parental factors affecting QOL of childhood cancer survivors. 13,18,20–23 The primary aim of this study is an investigation of HRQOL and associated parental factors in a large Turkish sample of pediatric cancer survivors and making a com- parison with healthy children. The effects of cancer and its treatment were investigated in different age, sex, and disease groups. Furthermore, the role of factors which are likely to affect HRQOL such as sociodemographic features and parental psychopathology were analyzed. Received for publication April 4, 2011; accepted November 14, 2011. From the Department of Pediatric Oncology, Hacettepe University, Institute of Oncology, Sihhiye, Ankara, Turkey. The authors declare no conflict of interest. Reprints: Begu¨l Yag˘ci-Ku¨peli, MD, MSc, Department of Pediatric Oncology, Hacettepe University, Institute of Oncology, Sihhiye, 06100, Ankara,Turkey (e-mail: drbegul@yahoo.com). Copyright r 2012 by Lippincott Williams & Wilkins ORIGINAL ARTICLE 194 | www.jpho-online.com J Pediatr Hematol Oncol  Volume 34, Number 3, April 2012