Current practice in the rehabilitation of complex regional pain syndrome: a survey of practitioners
Miller C, Williams MA, Heine PJ, Williamson E, O’Connell NE. Current practice in the rehabilitation of complex regional pain syndrome: a survey of practitioners. Disability and Rehabilitation. 2017;41(7):847-853. doi:10.1080/09638288.2017.1407968Link to Original Article: https://www.tandfonline.com/doi/full/10.1080/09638288.2017.1407968
Key Points
1. Complex Regional Pain Syndrome (CRPS) is a challenging and disabling condition characterized by chronic and disproportionate pain, with the cause not fully understood.
2. A survey of 132 international clinicians revealed that a broad range of rehabilitation modalities are used for CRPS, with commonly used interventions including patient education, encouragement of self-management, and physical exercises.
3. A significant proportion of clinicians do not use established diagnostic criteria for CRPS, potentially complicating the identification of appropriate cases for treatment.
4. The survey found that educational and exercise-based interventions are frequently used, while pain provocative therapies, splinting, contrast bathing, and thermal therapies are less commonly employed.
5. Most respondents expressed interest in participating in future CRPS research, but many were reluctant to involve their patients in trials with minimal care arms, highlighting a challenge in determining optimal control groups for clinical trials.
6. The results of the survey align with international clinical guidelines for CRPS, and the next steps may involve developing a consensus on best practice and addressing the challenge of recruiting sufficient participants for clinical trials.
Introduction
Complex regional pain syndrome (CRPS) encompasses a range of clinical presentations featuring chronic and disabling persistent pain disproportionate to preceding injury and not anatomically restricted to a specific peripheral nerve distribution. Its estimated incidence rate is 5.4-26.2 per 100,000 person years, frequently following wrist fractures. The cause remains unknown, but it is believed to involve an aberrant inflammatory response and autonomic and central nervous system dysfunction. The impact on sufferers is severe, limiting limb use and leading to diminished quality of life and high rates of comorbid depression. CRPS is categorized into type I and type II based on the presence or absence of peripheral nerve injury, but both share common core features. It is challenging to manage, and patients often face inconsistent pathways of care, leading to poor outcomes. Multiple international clinical guidelines recommend rehabilitation therapies as the core treatment for CRPS, but the evidence base is limited, with small trials dominating and no compelling evidence of effectiveness. The rarity of CRPS poses significant challenges to conducting clinical trials of adequate size. As a result, developing contemporary multimodal, individually tailored "best practice" models of care is suggested. To address this critical gap, the study aims to identify current practices among clinicians delivering rehabilitation-based therapy for CRPS, determine how CRPS diagnosis is made, and establish the modalities used by clinicians to treat CRPS, as well as those considered unhelpful or harmful.
Methods
This study obtained approval from the Research Ethics Committee of the Department of Clinical Sciences at Brunel University London. The research involved an online survey of rehabilitation clinicians, comprising fixed-response and free-text questions. The survey questions were developed by a team of physiotherapists and clinical researchers. Fixed-response questions covered participants' professional background, years of experience treating CRPS, diagnostic criteria used, patient caseload, treatment options utilized, and willingness to participate in further research or clinical trials. The survey did not differentiate between CRPS-I and II. Respondents were asked to rate the frequency of utilizing various treatment options for acute and chronic CRPS on a 5-point Likert scale and to provide reasons for considering any options ineffective or harmful. Additionally, they were asked about their interest in further involvement in research and willingness for their patients to participate in a clinical trial. The survey, hosted on the Bristol Online Surveys platform, ensured anonymity of all responses. The survey aimed to gather information on current clinical practices for treating CRPS with rehabilitation-based therapy from a wide range of rehabilitation clinicians.
Survey distribution
The study aimed to engage rehabilitation therapists (Physiotherapists and Occupational Therapists) and Specialist Nurses experienced in treating patients with CRPS. Multiple methods were employed to distribute the survey, including a blog post and a banner with a survey hyperlink on the Body in Mind website, where one of the authors holds a senior position. Additionally, the researchers reached out to specific UK-based special interest groups, such as the British Association of Hand Therapists, Association of Chartered Physiotherapists in Orthopaedic Medicine, and the Physiotherapy Pain Association, who sent out email invitations to their members. Two of these groups also sent a reminder email two weeks after the initial invitation. The survey was also advertised on the discussion forums of the UK Chartered Society of Physiotherapy in relevant categories, and further promoted through tweets from the authors' Twitter accounts, the Centre for Rehabilitation Research in Oxford, and Body in Mind. The survey was open for a two-month period from September 1st to November 1st.
Data analysis
The data from the study were analyzed using Bristol Online Surveys software, Microsoft Excel, and SPSS. Quantitative data underwent analysis using descriptive statistics, encompassing the summarization of respondents' demographic characteristics, frequency of responses to dichotomized questions, and distribution of responses for questions with Likert-style response scales. Furthermore, free text answers underwent thematic analysis, which was subsequently summarized using illustrative quotes.
Results
Sample characteristics
The study included 132 completed surveys from physiotherapists, occupational therapists, and a specialist nurse. Most respondents were from the UK (58%), with others from Australia, New Zealand, Canada, and the Republic of Ireland. No difference were found in the number of years of clinical experience treating patients with CRPS. About one-third of physiotherapists and a similar proportion of occupational therapists stated they did not use formal diagnostic criteria. The number of new and follow-up acute and chronic CRPS patients seen per month was low, with wide variability in treatment sessions and duration ranging from 0 to more than a year or until the patient recovers from CRPS.
Frequency of treatment modalities used in acute and chronic CRPS
Educational interventions, physical exercise, and brain/perceptual training were commonly used in managing acute and chronic CRPS. Cognitive behavioral therapy, mindfulness, and interdisciplinary pain management programs were also regularly utilized. Tactile desensitization was frequently employed, while pain exposure therapy was used rarely. Passive therapies like thermal therapies and transcutaneous electrical nerve stimulation were generally used infrequently.
Table 3. Frequency of use: educational interventions
Table 4: Frequency of use: physical exercise interventions
Table 5: Frequency of use: psychological/brain interventions
Table 6. Frequency of use: exposure-based therapies
Table 7. Frequency of use: passive therapies
Ineffective/unsafe CRPS treatments
The study included a voluntary open text question to gather participants' opinions on ineffective and unsafe treatments for managing acute and chronic complex regional pain syndrome (CRPS). Forty-four participants identified ineffective or unsafe treatments for acute CRPS, while 37 identified such treatments for chronic CRPS. Participants expressed concerns about the ineffectiveness and safety of various treatments for both acute and chronic CRPS, such as splinting, cold therapy, pain-provocative or aggressive therapy, passive therapies like transcutaneous electrical nerve stimulation and massage, mirror therapy, aggressive strengthening, passive range of movement, and cognitive behavioral therapy. They highlighted potential negative impacts of these treatments, including increased disuse, reinforcement of avoidance behavior, exacerbation of existing symptoms, potential flare-ups, promotion of dependence on passive strategies, and concerns about the lack of evidence to support specific therapies. Participants also stressed the need for qualified mental health providers to deliver cognitive behavioral therapy.
Table 8. Free texts to answers to ineffective/unsafe CRPS treatments
Future research
The future research section of the study revealed that 84% of the respondents showed interest in participating in future CRPS research. However, 54% of the participants expressed unwillingness to randomize their patients to a minimal care (watchful waiting) arm in future studies. The negative responses were further clarified by 67 respondents through open text responses, which were categorized into three main themes. Firstly, many respondents strongly believed in the effectiveness of the treatments and interventions they currently provided, expressing that denying patients the opportunity for recovery and restoration of function would be unacceptable. Ethical concerns were also prominent, with participants citing concerns about the ethics of withholding treatment from individuals with CRPS, particularly in relation to coexisting psychological distress. Some highlighted the importance of early intervention and considered it unethical to adopt a watchful waiting approach. Lastly, pragmatic concerns were raised, including limited referrals, long waiting lists, and the challenges of delivering minimal care in private practice. These findings suggest that clinicians have reservations about randomizing patients to minimal care arms in future research due to strong belief in the effectiveness of current interventions, ethical concerns about withholding treatment, and pragmatic challenges in delivering minimal care.
Discussion
The survey among Physiotherapists, Occupational Therapists, and Nurses indicates that rehabilitation for individuals with CRPS typically involves multimodal approaches. While educational approaches and physical exercises are commonly used, passive and pain provocative therapies are less popular. Diagnostic criteria usage varies, which may lead to misdiagnosis of CRPS cases. Treatment duration and intensity also vary widely among respondents, and passive therapies are rarely utilized. Mirror therapy and graded motor imagery, recommended in guidelines, are used less frequently, with growing uncertainty about their effectiveness in chronic CRPS. Respondents are generally hesitant to engage individuals with CRPS in pain exposure therapy, despite guideline recommendations. Evidence regarding pain exposure approaches for CRPS is conflicting, with some studies showing positive effects while others raise concerns about control group treatments. The survey results suggest that the control group treatments in some studies may not reflect the actual treatment as usual, potentially influencing the positive findings in favor of exposure therapy. Overall, the survey provides insights into the current practices and challenges in CRPS rehabilitation, highlighting the need for standardized best practice models and randomized controlled trials to improve rehabilitation outcomes for CRPS sufferers.
Limitations
The research paper acknowledges several limitations in the survey conducted to gather information on current clinical practices for treating Complex Regional Pain Syndrome (CRPS) with rehabilitation-based therapy. The survey’s reliance on the Body in Mind website and specific professional interest groups for recruitment raises concerns about potential over-representation of certain views, particularly from the UK and Australia, and under-representation of other countries and more generalist clinicians. Moreover, the low participant numbers in various geographical groups limit the ability to analyze practice differences across locations. Additionally, the online recruitment approach precludes meaningful analysis of response rates or patterns. The survey design allowed respondents to skip questions, resulting in a notable proportion of missing data, particularly regarding acute care. The reasons for these omissions are unclear. The survey itself was not piloted or formally validated, and the research team notes that the analysis is descriptive due to the exploratory nature of the survey. These limitations highlight potential response bias, geographical and professional representation issues, missing data, and the exploratory nature of the survey, which should be considered when interpreting the findings on current clinical practices for CRPS rehabilitation.
Conclusions and Future Research
The study found that educational approaches and physical exercises are commonly used in the rehabilitation of patients with Complex Regional Pain Syndrome (CRPS), while passive treatments and pain provocative therapies are less favored. Current practices align with guidelines from the United Kingdom, the Netherlands, and the USA, although over one-third of respondents did not use diagnostic criteria. The next step involves developing consensus on best practices, potentially through methods like the Delphi or Nominal Group Technique to design complex interventions.
The study revealed varying perspectives on specific rehabilitation strategies. For instance, splinting may reinforce behaviors of protecting the affected limb and is unlikely to be helpful in chronic cases. Hot/cold strategies, pain exposure therapy, passive strategies, graded motor imagery, mirror therapy, aggressive strengthening, and range of motion exercises were also evaluated, with divergent opinions from respondents about their effectiveness in acute versus chronic cases.
A challenge for future research is the concept of professional "equipoise," as the survey indicated therapists' hesitancy to randomize CRPS patients into a minimal care group despite limited evidence for rehabilitation approaches. Additionally, recruiting adequate numbers of participants for clinical trials remains a substantial challenge due to the relatively small number of patients seen at each center.
Opportunities for Future Research
1. Develop consensus on best practice for the rehabilitation of Complex Regional Pain Syndrome (CRPS) through methodologies such as Delphi or Nominal Group Technique. This can support the design of a complex intervention for future evaluation.
2. Investigate the impact of the lack of consensus on diagnostic criteria for CRPS, given that over one-third of the respondents in the survey did not use any established criteria for diagnosis.
3. Explore the feasibility and optimal design of control groups in clinical trials for CRPS rehabilitation, considering the reluctance of many therapists to randomize patients into minimal care groups despite limited evidence supporting rehabilitation approaches.
4. Conduct further research to evaluate the effectiveness of specific treatments identified as less valued by survey respondents, such as passive therapies and pain provocative therapies, in the management of CRPS.
5. Address the challenge of recruiting adequate numbers of participants for clinical trials on CRPS rehabilitation, given the relatively small numbers of patients seen at each center and the rarity of the condition.
6. Investigate the potential impact of response bias in surveys like the one conducted, given the dominance of certain recruiting gateways and professional special interest groups, and explore how to obtain a more representative sample of clinicians across different countries and clinical environments.
