Goals for rehabilitation: What are the priorities of patients with Complex Regional Pain Syndrome?

Llewellyn, Alison; Birklein, Frank; Brunner, Florian; Gobeil, Francois; Harden, R Norman; Knudsen, Lone; Maihofner, Christian; Zyluk, Andrzej; McCabe, Candida

Abstract

AIM OF INVESTIGATION
Established UK guidelines for the management of Complex Regional Pain Syndrome (CRPS) advocate physical and vocational rehabilitation as one of the primary pillars of care1. In this context, rehabilitation services commonly seek to improve patients’ function and quality of life as well as supporting them to self-manage their condition in the long term. In the present study we analysed qualitative data from an international sample in order to identify the rehabilitation aims of people with CRPS, specifically in relation to their participation in valued activities. Shedding light on what matters most to patients in these domains is important for the development of multidisciplinary rehabilitation practices that patients perceive as relevant to their goals.

METHODS
Participants (≥18 years) who met, or had met, Budapest diagnostic criteria for CRPS2 were recruited via databases and clinics in eight countries (UK, Netherlands, Germany, Denmark, Switzerland, Poland, Canada, USA) with the aim of identifying those factors patients consider most relevant to their definition of recovery from CRPS. Results from this work have been reported previously3; however, qualitative data elicited insights beyond the scope of the original research question. The current study presents results from a secondary deductive analysis of these data, using the domains of the International Classification of Functioning, Disability and Health’s (ICF) “Activities and Participation” component to code responses. Patient’s primary rehabilitation aims for learning and applying knowledge; general tasks & demands; communication; mobility; self-care; domestic life; interpersonal interactions & relationships; major life areas; and community, social & civic life, were thus identified.

RESULTS
Responses were received from 347 participants (80% female, 91% non-recovered, 53% disease duration ≥3 years). “Mobility” was the most frequently represented ICF domain in the data, with participants particularly highlighting the importance of improving limb function; being able to use and handle objects effectively; to walk, move/ maintain body position; and to use transport. The second most represented domain was “general tasks & demands” including returning to normal daily routines and handling the psychological demands of illness. The data revealed concern with “self-care” as next most important, including dressing and wearing clothing of one’s choice, and having adequate sleep. Thereafter, returning to participation in recreation/leisure activities was commonly cited, reflecting the “community, social & civic life” domain. Whilst less frequently reported, “domestic life, particularly carrying out household tasks, and employment (a “major life area”) were also valued activities.

CONCLUSIONS
Whilst it is recommended in CRPS rehabilitation that each individual should have their own tailor-made treatment programme4 the present findings illustrate the most common concerns across this patient group. A typical rehabilitation treatment pathway may include physiotherapy, occupational therapy and psychology and active participation in the treatment process by the person with CRPS is considered essential for successful rehabilitation5. When developing multi-disciplinary treatment approaches, being mindful of the primary concerns of patients may enable health care professional to optimize treatment outcomes by ensuring rehabilitation therapies are directly relevant to their activity and participation goals.

• Presentation Conference Type: Poster
• Conference Name: International Association for the Study of Pain 17th World Congress on Pain
• Start Date: Sep 12, 2018
• End Date: Sep 16, 2018
• Acceptance Date: Apr 27, 2018
• Publicly Available Date: Jun 7, 2019
• Peer Reviewed: Not Peer Reviewed
• Public URL: https://uwe-repository.worktribe.com/output/868997
• Additional Information: Title of Conference or Conference Proceedings : International Association for the Study of Pain 17th World Congress on Pain