Feasibility and acceptability of including patients with rare bone diseases in existing pain rehabilitation programmes

Adults with rare bone diseases face several challenges in rehabilitation services. Our aim was to assess feasibility and acceptability of an adapted pain rehabilitation programme incorporating guidance from disease experts. Two groups of eight adults with rare bone diseases and chronic pain were integrated into an existing rehabilitation programme. Experts guided the clinicians throughout the programme. Feasibility was measured by analysing the recruitment, retention and adherence and the amount of resources used for adapting the standard programme. Acceptability was assessed with an evaluation form, patient reported outcome measures, physical testing and qualitative interviews with participants and health care workers, conducted post-programme. Results showed good feasibility and high acceptability. Participants and clinicians felt more secure with experts’ guidance. Participants emphasized the importance of tailoring physical activities to their personal capacities, education specific for their diseases, adaptations in the physical environment, and having opportunities to connect with others who have similar diagnoses. Adapting an existing pain rehabilitation programme and adding guidance by experts is a feasible and acceptable way of improving rehabilitation services for adults with rare bone diseases.