Quality of life in childhood advanced cancer: from conceptualization to assessment with the Advance QoL tool

Abstract

Background Advanced childhood cancer, a condition with no available cancer-focused treatment options, greatly impacts Quality of Life (QoL). We need appropriate assessment strategies to select adapted treatment targets, improve care and optimize communication. Our first goal was to identify the domains of patients’ QoL by combining for the first time the perspectives of patients and parents with previously collected reports in professionals. Our second goal was to develop a simple QoL assessment tool and optimize its format and content for use in the childhood advanced cancer population. Methods To identify QoL domains, 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 treatment centre. We used inductive thematic content analysis to code and categorize respondents’ viewpoints. The first version of the tool (Advance QoL) was then drafted, and structured feedback was collected through interviews and a survey with 15 experts. We computed content validity indices. Results Apart from the physical, psychological, and social domains, participants insisted on four original themes: autonomy, pleasure, the pursuit of achievement, and the sense of feeling heard. This was in line with the categories found in a preliminary study involving professionals (PMID: 28137343). Experts evaluated the tool as clear, relevant, acceptable, and usable. They formulated recommendations on instructions, timeframe, and item formulations, which we implemented in the refined version. Conclusions Advance QoL is an innovative tool targeting key life domains in childhood advanced cancer. It is focused on preserved abilities and targets of care. The refined version is appropriate for adult respondents within families and professionals. Future studies will develop versions for young ages to collect the experience of patients themselves. This will open on future reliability, validity, sensitivity, and implementation studies.

Processus pour le développement d’une stratégie d’évaluation de la qualité de vie en cancer avancé pédiatrique

“…La deuxième étude a visé à recueillir la perspective des jeunes atteints de cancer avancé et de leurs parents sur la QdV [31]. Des entrevues semi-structurées individuelles ont été réalisées pour obtenir leur perspective respective de la QdV en cancer avancé pédiatrique.…”

Quality-of-Life Assessment in Pediatric Advanced Cancer: Development of the Patient-Reported Outcome Measure Advance QoL

“…Following the steps detailed in the methods, we developed two preliminary versions (for 8-12 and 13-18 year olds) based on the proxy version [22]. As for the proxy, both versions used a descriptive and individualized approach, a three-point response scale, and a 24 h timeframe.…”

“…To address these issues, researchers have been developing a practical measure to assess QoL in situations of serious cancer without a cure [21][22][23]. This measure, named Advance QoL, is based on a definition of QoL elaborated from qualitative studies with young people, their parents, and healthcare professionals [21,22].…”

“…To address these issues, researchers have been developing a practical measure to assess QoL in situations of serious cancer without a cure [21][22][23]. This measure, named Advance QoL, is based on a definition of QoL elaborated from qualitative studies with young people, their parents, and healthcare professionals [21,22]. Seven important QoL domains were identified and characterized by specific indicators: physical, psychological, social, pleasure, autonomy/independence, pursuit of achievements, and feeling heard.…”

“…Seven important QoL domains were identified and characterized by specific indicators: physical, psychological, social, pleasure, autonomy/independence, pursuit of achievements, and feeling heard. A study has reported the refinement of a proxy measure appropriate for adult respondents (e.g., family members, professionals) [22]. Yet, the language level of this version is too complex for children and adolescents requiring a college reading level (Scolarius French readability index) [24].…”