Emerging Methodologies in Pediatric Palliative Care Research: Six Case Studies

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.

Complexity of Pediatric Chronic Disease: Cross-Sectional Study With 16,237 Patients Followed by Multiple Medical Specialties

“…14,16,25 Importantly, Psychiatry and Palliative and Pain Care were the medical areas in which the patient had a great chance of being followed by three or more medical specialties. This finding is related to the medical complexities in our critically ill patients, 25,26 who may also present several mental health conditions and chronic pain diseases.…”

Polypharmacy in Children and Young People With Life-limiting Conditions From 2000 to 2015: A Repeated Cross-sectional Study in England

“…3,[9][10][11][12][13] This includes the rising population of children with life-limiting conditions (those for which there is no reasonable hope of cure and from which children or young people will die, such as Batten disease) and life-threatening conditions (those for which curative treatment may be feasible but can fail, such as cancer), referred to hereafter as life-limiting conditions (LLCs). 14,15 Children and young people with LLCs often have medical complexity 16 and multimorbidity. 15 They are likely to require several different medications during their illness and these may change over time as their condition worsens (i.e., recurrence of cancer or progression of muscle weakness in neuromuscular conditions) or they experience new symptoms.…”

“…15 They are likely to require several different medications during their illness and these may change over time as their condition worsens (i.e., recurrence of cancer or progression of muscle weakness in neuromuscular conditions) or they experience new symptoms. 9,14 In many cases polypharmacy is therefore, appropriate, but these children may also be at risk of potentially inappropriate, problematic, or excessive polypharmacy because of their changing illness profiles, the complexity of their condition and symptoms, numerous hospitalizations, multiple professionals prescribing different medications, and regular use of "off-label" medicines. 14,[17][18][19][20][21] All of these factors may result in children cumulating medicines, experiencing adverse drug events, and problems with adherence and burden, particularly without regular review of medication regimens.…”

Challenges and Priorities for Pediatric Palliative Care Research in the U.S. and Similar Practice Settings: Report From a Pediatric Palliative Care Research Network Workshop

“…While the number of published research studies addressing pediatric palliative and hospice care has steadily increased over the past two decades (2), in order to improve the breath, depth, and quality of PPC research and to dramatically advance the evidence base for PPC interventions, practices, and programs, the field urgently needs to better understand the challenges and opportunities for rigorous scholarship. (3) To this end, the Pediatric Palliative Care Research Network (PPCRN) conducted a one-day workshop to examine the current state of pediatric palliative and hospice care science, seeking to clarify challenges and identify key priorities.…”