Comparison of Quality of Life across Adolescents with Cancer, Sickle Cell Disease and Hemophilia.
Authors: Sharma Mukta , Stegenga Kristin , Woods Gerald 
Published: October 2019

Abstract
The purpose of this study is to assess Quality of Life (AQoL) of adolescents with cancer and compare it to adolescents with other hematological disorders who receive medical care from the Hematology/Oncology Clinic at Children’s Mercy Hospitals and Clinics (CMHC). Children with cancer are surviving longer due to improved medical care, and cancer is recently being recognized as a chronic illness. The other two disease conditions we are comparing the QoL of adolescents with cancer are - sickle cell disease (SCD) and hemophilia. Literature shows evidence that for each disease condition, patients have lower QoL compared to their healthy counter-parts, but there is a void in area of research comparing QoL of adolescents with cancer to other blood diseases like hemophilia and SCD. This project was funded by Children’s Mercy Cancer Center Board.
Methods - Subjects between ages of 11 to 17 years with diagnosis of cancer, sickle cell disease or hemophilia that are followed at CMHC were eligible to participate. We mailed out AQoL questionnaires to 100 oncology, 100 sickle cell, and 52 hemophilia adolescents who were identified from database. Data was collected using a Likert-scaled instrument with 25 questions under four major sub-domains - Physical, emotional, social and functional well being. The AQOL scores for each domain represented an average of the Likert scale items with a theoretical minimum of 0 and a theoretical maximum of 4. We defined a difference of 0.5 or greater on any subdomain as having clinical relevance.
Results 41 oncology, 29 SCD and 17 hemophilia responses were received back. Demographic data were self-disclosed to describe the sample population. Overall AQoL scores ranged from 0.0 to 4.0 for Phys, 1.0 to 4.0 for Soc, 0.4 to 4.0 for Emotional, and 1.4 to 4.0 for Functional subdomain. For all four measures, the scores were skewed right (clustered towards the upper limit with a long tail extending to the lower values). Only the Physical subdomain showed a borderline effect (p=0.056) with the Hemophilia group showing a larger mean than the other two groups. The remaining subdomains did not exhibit differences large enough to be clinically or statistically significant. Although there were small difference in the Oncology group with gender on the Physical and Emotional scale, these difference were not statistical significant. The differences on the Social and Functional well being scale were very small and within the range of clinical indifference, even after allowing for sampling error. There were no statistical or clinical differences in the Sickle Cell group between boys and girls, but this may be due to the small sample size in this group. No comparison with gender was possible in the hemophilia group. There were no statistical differences in the oncology group between those on or off treatment, but this may also be due to the small sizes in these groups.
Conclusion With a few exceptions, the QOL subdomains showed no statistically significant or clinically significant differences between the three disease groups or between the boys and girls within each disease groups. This may be due, in part, to the small sample size of this study. There were two trends with achieved borderline significance: hemophilia patients showed higher AQOL scores on the physical and emotional subdomains.