Charles-Bruneau Cancer Care Centre, Sainte-Justine UHC, Research Centre, 3175, Chemin de la Côte-Sainte-Catherine, Montréal, QC, H3T 1C5, Canada.
Faculty of Postgraduate Studies, Université de Montreal, Montreal, QC, Canada.
BMC Palliat Care. 2022 Aug 1;21(1):138. doi: 10.1186/s12904-022-01025-z.
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.
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.
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.
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.
患有晚期儿童癌症的儿童，目前尚无专门针对癌症的治疗方案，极大地影响了他们的生活质量（QoL）。我们需要合适的评估策略来选择适应性的治疗目标，改善护理并优化沟通。我们的首要目标是通过首次结合患者和家长的观点以及专业人员之前收集的报告，来确定患者生活质量的各个领域。我们的第二个目标是开发一种简单的生活质量评估工具，并优化其格式和内容，使其适用于晚期儿童癌症患者。
为了确定生活质量的领域，我们对来自我们治疗中心的 7 名年轻患者（4 名女孩，3 名男孩，年龄 13±4 岁）和 9 名家长（7 名母亲，2 名父亲）进行了定性访谈。我们使用归纳主题内容分析法对受访者的观点进行编码和分类。然后，起草了该工具的第一版（Advance QoL），并通过与 15 位专家进行访谈和调查，收集了结构化的反馈。我们计算了内容效度指数。
除了身体、心理和社会领域外，参与者还坚持了四个原始主题：自主性、愉悦感、追求成就和被倾听的感觉。这与涉及专业人员的初步研究中发现的类别一致（PMID：28137343）。专家们认为该工具清晰、相关、可接受和可用。他们对说明、时间范围和项目制定提出了建议，我们在修订版中进行了实施。
Advance QoL 是一种针对晚期儿童癌症关键生活领域的创新工具。它专注于保留的能力和治疗目标。修订版适合家庭中的成年受访者和专业人员使用。未来的研究将开发适合年幼患者的版本，以收集患者自身的经验。这将为未来的可靠性、有效性、敏感性和实施研究开辟道路。
