Methodological Review
Series created in collaboration with the Palliative Care Research Cooperative group (PCRC) Associate Co-Editors: Laura C. Hanson, MD, MPH (PCRC Measurement Core) and Tamara Somers, PhD (PCRC Clinical Studies/Methodology Core)
From Theory to Patient Care: A Model for the Development, Adaptation, and Testing of Psychosocial Interventions for Patients With Serious Illness

https://doi.org/10.1016/j.jpainsymman.2021.02.036Get rights and content

Abstract

Psychosocial and supportive care interventions are a cornerstone of palliative care science, yet there is little published guidance regarding how to develop, test, adapt, and ultimately disseminate evidence-based interventions. Our objective was to describe the application of a single intervention-development model in multiple populations of patients with serious illness. Specifically, we use the “Promoting Resilience in Stress Management” (PRISM) intervention as an exemplar for how the Obesity Related Behavioral Intervention Trials (ORBIT) intervention-development model may be applied to: 1) create an initial palliative care intervention; 2) adapt an existing intervention for a new patient-population; 3) expand an existing intervention to include new content; and, 4) consider dissemination and implementation of a research-proven intervention. We began by identifying key psychological and social science theories and translating them a testable clinical hypothesis. Next, we conducted observational studies and randomized trials to design, refine, and standardize PRISM within unique patient-populations. We moved backwards in the ORBIT model when necessary to adapt or expand PRISM content and delivery-strategies to meet patient-reported needs. Finally, we began to explore PRISM's effectiveness using Dissemination and Implementation research methods. Key lessons include the need to ground intervention-development in evidence-based theory; involve patient, clinician, and other stakeholders at every phase of development; “meet patients where they are at” with flexible delivery strategies; invest in the time to find the right scientific premise and the right intervention content; and, perhaps most importantly, involve an interdisciplinary research team.

Section snippets

Key Message

Palliative Care intervention-science is critically important. We describe the application of a gold-standard intervention-development model to the creation and study of a psychosocial intervention for patients with serious illness. Lessons-learned include the need to identify the right evidence-based theory, develop content directly with patients, and work with an interdisciplinary team.

Methods

In 2015, intervention-scientists from the National Institutes of Health Office of Behavioral and Social Sciences Research, the National Cancer Institute, the National Heart, Lung, and Blood Institute, the National Institute of Child Health and Human Development, the National Institute of Diabetes, Digestive, and Kidney Diseases, and the Obesity Related Behavioral Intervention Trials (ORBIT) Consortium created a cross-disciplinary collaboration to develop a now widely-used model to accelerate

Question #1: How Do I Translate Theory to an Initial Design?

When we set out to create the PRISM program, we observed that most clinical interventions target pathology. Healthcare providers are trained to see the negative and exhorted to “fix” it. We wondered what would happen if we turned that paradigm upside-down? What if we also tried to bolster individual resilience and buffer the adversities of illness? Would doing so alleviate suffering and improve quality of life?

Discussion

Intervention science is critical in palliative care research, and few models exist to guide us in how to rigorously and reproducibly design, test, implement, and disseminate those interventions. For the past decade, our team has relied on the ORBIT model1 to develop the PRISM intervention. To date, we have worked in every phase of research, and we continue to learn. Key lessons learned are: 1) Invest time to find the right scientific premise. A key to our success is that we grounded our work in

Disclosures and Acknowledgments

The authors are grateful to the patients and families who participated in these research projects. The authors also thank members of the Palliative Care and Resilience (PCAR) Lab at Seattle Children's Research Institute, for over a decade of shared PRISM-development work. Drs. Rosenberg, Steiner, Lau, Fladeboe, Brown, and Yi-Frazier are supported in part by grants from the National Institutes of Health (Rosenberg: R01CA222486, R01CA225629, KL2TR000421; Steiner: K23HL151801, Lau: 5K12 HL137940-02

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