Abstract
To the Editor:
We read with great interest the recent Editorial in the Journal of Palliative Medicine that concluded “Patient-reported outcomes matter—let us weave them into every service so that we understand exactly how we are improving every person's life”. 1 Interestingly, this was published at the same time as a systematic review of outcome measures in pediatric palliative care, which concluded, “There is currently no ‘ideal’ outcome assessment measure for use in pediatric palliative care”. 2
The lack of an appropriate tool is a fundamental challenge when attempting to evaluate the impact of care. The authors of the review of pediatric measures rightly highlight the importance of developing and validating a tool that is relevant to the diverse range of conditions and problems that are typically seen in palliative care services for children and young people.
To address the lack of a measure, we note a series of additional population-specific methodological challenges that must be considered. First, a tool should not focus on end of life as increased survival has led to disease trajectories for children that are characterized by slow deterioration and high dependency and disability. In terms of children's ability to participate in patient-centered outcome measures (PCOMs), we do not yet know the optimal length, format, or whether optional items are needed for subpopulations. These issues of acceptability form a key aspect of validity, and any tool must be appropriate to the child's developmental phase as opposed to chronological age, complexity of language, and communication needs. Social and educational engagement problems are also potentially radically different from those outcome measures from adults, and include play needs and sibling support.
PCOMs have paid inadequate attention to children with serious illness and their parents. This may be a direct result of the complexity of the science and implementation, including challenging issues of consent and proxy validity between children and parents.
It is timely to develop research protocols that can address these challenges, using the highest scientific principles of tool validation, while ensuring attitudes toward the use of a resulting PCOM are optimized by engaging professionals in the planning stage. Involvement of all key end users (children, families, and providers) is essential to ensure that clinically useful PCOMs can become routinely used in pediatric palliative care 3 so that access, equity, and quality of care are optimized. As the number of children needing palliative care increases, the need for a valid and useful tool is urgent. Advances in the development and validation of outcome measures for children and their families accessing palliative care have been made in sub-Saharan Africa. 4 South–North partnerships should be established to share learning and inform tool validation in high-income countries. We recommend core times are proposed wherever possible to facilitate international collaboration and comparison of outcome data.