Quality of life in childhood advanced cancer : from conceptualization to assessment with the Advance QoL tool : working paper 2021-01
Publisher(s)Hôpital Sainte Justine. Centre de Psycho-Oncologie
Context. Quality of life (QoL) of children with advanced cancer is profoundly impacted. Despite recent advances, there is no QoL assessment tool appropriate for this population. Developing an adequate assessment strategy is timely to facilitate care and communication and select appropriate treatment targets. Objective. Firstly, we aimed to identify the domains of patients’ QoL by comparing the point of view of patients and parents with previous data of professionals’ perspectives. Secondly, we wished to develop a simple QoL assessment tool and optimize its content and format for this population. Methods. We conducted qualitative interviews with 7 young patients (4 girls, 3 boys, aged 13 ± 4 yrs) and 9 parents (7 mothers, 2 fathers) from our cancer care centre to identify QoL domains. Data were analyzed using inductive thematic content analysis. Based on the result, we drafted a first version of the tool and led an in-person interview with 15 experts to collect appreciative comments and fill a quick survey. Results. In addition to the traditional physical, psychological, and social domains, participants insisted on core aspects: autonomy, pleasure, the pursuit of achievement, and the sense of feeling heard. This confirmed the categories found in a previous study with professionals (PMID: 28137343). Regarding the Advance QoL tool, the experts judged it as clear, relevant, acceptable, and usable. They recommended clarifying instructions and item formulations and adapting timeframe to the respondent’s experience. Significance of results. Advance QoL is an innovative simple tool targeting key life domains important to families and professionals and focusing on preserved abilities. The current version is appropriate for adult respondents (families and professionals). Future studies will develop version for all ages and study their psychometric properties.