Abstract
Given the broad focus of pediatric palliative care (PPC) on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This manuscript, written by experienced PPC researchers, describes issues encountered in our own areas of research and the novel methods we have identified to target them. Specifically, we discuss potential approaches to: assessing symptoms among nonverbal children, evaluating medical interventions, identifying and treating problems related to polypharmacy, addressing missing data in longitudinal studies, evaluating longer-term efficacy of PPC interventions, and monitoring for inequities in PPC service delivery.
Highlights
Pediatric palliative care (PPC) has an expansive mission
If we ignore the presence of missing data in a pediatric palliative care (PPC) study, and children who are sicker are more likely to have missing data, inferences made based on data from the remaining less-ill or less-symptomatic participants can be misleading, failing to reflect what happened to all the participants, and may over- or under-estimate associations or treatment effects
Analytic approaches for handling missing data are all based on three different possible assumptions about the mechanisms that can result in missing data: missing completely at random (MCAR), missing at random (MAR), and missing not at random (MNAR)
Summary
Pediatric palliative care (PPC) has an expansive mission. In our care of children with potentially life-limiting illnesses, we take into consideration the physical, emotional, spiritual, and relational needs of children and their families [1]. Children 2018, 5, 32 researchers, we have each faced the gap between defining the question of interest and identifying how best to study it For this manuscript, we have selected challenges that we have encountered in our own work and identified potential methodologic approaches to address each of them. We have highlighted other palliative care studies (adult or pediatric) that utilize the proposed methods whenever possible. This manuscript describes approaches to: assessing symptoms among nonverbal children, evaluating medical interventions, identifying and treating problems related to polypharmacy, addressing missing data in longitudinal studies, evaluating longer-term efficacy of PPC interventions, and monitoring for inequities in PPC service delivery.
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