Engaging stakeholders to refine an activity pacing framework for chronic pain/fatigue: A nominal group technique.

Abstract

Due to the current absence of a standardized guide for activity pacing, the concept of pacing is interpreted in various ways by healthcare professionals, patients and researchers. Consequently, the effects of pacing across different conditions are unclear. The present study aimed to undertake the second stage in the development of an activity pacing framework for chronic pain/fatigue. The newly developed activity pacing framework was refined using a consensus method. A nominal group technique (NGT) was selected to engage stakeholders to reach agreement on the top 10 priorities for inclusion in the framework and accompanying appendices. Participants included patients with diagnoses of chronic pain/fatigue and healthcare professionals working in fields of chronic pain/fatigue. Ten participants were recruited via purposive sampling: four patients, two physiotherapists, two occupational therapists and two psychological wellbeing practitioners. The top priorities for the pacing framework included a clear definition of pacing, and stating the aims and context of pacing. The appendices were refined as a teaching guide, including priorities of detailing the stages of pacing, the overactivity-underactivity cycle/pain cycle and goal setting. Incorporating a diverse panel of stakeholders was an effective and inclusive method to refine the activity pacing framework. The framework has been purposefully designed for wider use across patients with chronic pain/fatigue and by various healthcare professionals. The framework provides a comprehensive definition, background and manual for healthcare professionals to instruct activity pacing. Further study will test the clinical usability of the framework, to enable the standardization of activity pacing in future investigations.