Abstract

BackgroundPancreatic cancer has one of the highest mortality rates of any malignancy, placing a substantial burden on patients and families with high unmet informational and supportive care needs. Nevertheless, access to psychosocial and palliative care services for the individuals affected is limited. There is a need for standardized approaches to facilitate adjustment and to improve knowledge about the disease and its anticipated impact. In this intervention-development paper guided by implementation science principles, we report the rationale, methods, and processes employed in developing an interdisciplinary group psychoeducational intervention for people affected by pancreatic cancer. The acceptability and feasibility of implementation will be evaluated as a part of a subsequent feasibility study.MethodsThe Schofield and Chambers framework for designing sustainable self-management interventions in cancer care informed the development of the intervention content and format. The Consolidated Framework for Implementation Research served as an overarching guide of the implementation process, including the development phase and the formative evaluation plan of implementation.ResultsA representative team of stakeholders collaboratively developed and tailored the intervention content and format with attention to the principles of implementation science, including available resourcing. The final intervention prototype was designed as a single group-session led by an interdisciplinary clinical team with expertise in caring for patients with pancreatic cancer and their families and in addressing nutrition guidelines, disease and symptom management, communication with family and health care providers, family impact of cancer, preparing for the future, and palliative and supportive care services.ConclusionsThe present paper describes the development of a group psychoeducational intervention to address the informational and supportive care needs of people affected by pancreatic cancer. Consideration of implementation science during intervention development efforts can optimize uptake and sustainability in the clinical setting. Our approach may be utilized as a framework for the design and implementation of similar initiatives to support people affected by diseases with limited prognoses.

Highlights

  • Pancreatic cancer has one of the highest mortality rates of any malignancy, placing a substantial burden on patients and families with high unmet informational and supportive care needs

  • Members show similar or even greater levels of distress than their patient counterparts [5]. Those affected by pancreatic cancer have high informational and supportive care needs regarding symptom management, communication with health care providers (HCPs), worry about loved ones, and uncertainty about the future [6]

  • We describe here the process of developing a psychoeducational intervention to address the informational and supportive care needs of people affected by pancreatic cancer, including patients and their loved ones, following an implementation science approach

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Summary

Introduction

Pancreatic cancer has one of the highest mortality rates of any malignancy, placing a substantial burden on patients and families with high unmet informational and supportive care needs. Members show similar or even greater levels of distress than their patient counterparts [5] Those affected by pancreatic cancer have high informational and supportive care needs regarding symptom management, communication with health care providers (HCPs), worry about loved ones, and uncertainty about the future [6]. These needs are often unmet, despite clinical practice guidelines calling for psychosocial and educational support and for early palliative care [6,7,8]. This gap in health care may be related to stigma and misunderstanding about the potential benefit of psychosocial and palliative care services [13, 14], or limited accessibility and availability [15]

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