Health‐related quality of life of children with acute lymphoblastic leukaemia: Comparisons and correlations between parent and clinician reports

The improving prognosis for children with cancer refocusses attention to long‐term outcomes with an emphasis on quality of life. Few studies have examined relationships and differences in reported results between the parent, child and clinician. We examined parent‐proxy and clinician‐reported functional status and health‐related quality of life for children and adolescents with acute lymphoblastic leukemia (ALL). Children and adolescents, 5–18 years, in the maintenance phase of treatment for ALL attending the Haematology/Oncology outpatient clinic at the Royal Children's Hospital, Melbourne, were eligible. Measures included: 1) parent‐reported functional health and well‐being (Child Health Questionnaire [CHQ]); 2) parent‐reported condition specific quality of life (Pediatric Cancer Quality of Life inventory [PCQL]); 3) clinician ratings of physical and psychosocial health; and 4) clinical indicators. Insufficient numbers of older patients prohibited collection of adolescent self‐reports. We had a 94% response and 31 participants. Mean time since diagnosis: 1.5 (SD 0.4) years. Parents reported significantly lower functioning and well‐being than population norms for all CHQ scales, whereas cancer‐specific quality of life was comparable to PCQL norms. Clinician reports of the child's global physical and psychosocial health were moderately associated with each other (rs = 0.56, p < 0.001), and with the parent‐reported physical (rs = 0.47, p < 0.01) and psychosocial (rs = 0.56, p < 0.001) CHQ summary scores. Clinician reports of the child's psychosocial health were not associated with any clinical indicators reported regularly. The results demonstrate that the social, physical and emotional health and well‐being of children with ALL is significantly poorer than the health of their community‐based peers. Routinely collected indicators of clinical progress conceal the psychosocial burden of ALL. Data on health, well‐being and quality of life can easily be incorporated into clinical care. © 2002 Wiley‐Liss, Inc.