Table 6 - uploaded by Andrzej Zyluk
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Background:
Complex Regional Pain Syndrome (CRPS) symptoms can significantly differ between patients, fluctuate over time, disappear or persist. This leads to problems in defining recovery and in evaluating the efficacy of therapeutic interventions.
Objectives:
To define recovery from the patients' perspective and better understand their priorit...
Context in source publication
Context 1
... 2 responses, whereby patients ranked the relevance of the 62 statements, were received from 252 patients (73%, 77% female, 90% non-recov- ered) (see Table 6). The statements ranked as the top five priorities across the whole sample were: no longer having (1) CRPS-related pain, (2) generalised pain and discomfort, (3) restricted range of move- ment, (4) need for medication, and (5) stiffness in the affected limb/s. ...
Citations
... The following recommendations are based on the 2018 S1-guideline of the German Society of Neurology [46] and its update of 2019 [47], as well as on the NICE guidelines for the treatment of CRPS [48]. The broad therapy goals are analgesia, which coincides with the most important aim of patients [49], and restitution of function. Further, psychological support and the stabilization of the socioeconomic situation are crucial pillars in the care of persistent CRPS cases. ...
Purpose of Review
The goal of this narrative review is to describe the current understanding of the pathology of Complex Regional Pain Syndrome (CRPS), as well as diagnostic standards and therapeutic options. We will then make the case for early recognition and management.
Recent Findings
CRPS remains an enigmatic pain syndrome, comprising several subtypes. Recent recommendations clarify diagnostic ambiguities and emphasize the importance of standardized assessment and therapy.
Summary
Awareness of CRPS should be raised to promote prevention, early detection, and rapid escalation of therapy in refractory cases. Comorbidities and health costs (i.e., the socioeconomic impact) must also be addressed early to prevent negative consequences for patients.
... Uh, yes, we can see that [you're] not right. (N6, F, [30][31][32][33][34][35][36][37][38][39][40][41][42][43][44][45][46][47][48][49]HCW) In most narratives, being 'back to normal' involved more than just the resolution of symptoms. Most participants described how their participation in daily life changed as their recovery progressed; "I was feeling quite reckless, getting from our bedroom which was on the first floor, down to the kitchen and back again. ...
... However, there are some precedents which provide potential exemplars for service transformation. Patient definitions of recovery from other areas of practice 34,35 emphasise the personal meaning of individual recovery and how resuming participation in daily life is often the patient-defined endpoint of illness. As stated in the narratives, recovery from COVID-19 meant getting back to their personal normal. ...
Objective:
This study aimed to describe and contextualise COVID-19 recovery from the perspective of patient-lived experience, to inform the evolving public health response to the pandemic.
Methods:
Narrative interviews were completed with 37 adult Australians between six and 10 months following their COVID-19 diagnosis. Verbatim transcripts were analysed thematically and trustworthiness was supported by multiple strategies to ensure rigour.
Results:
Three themes were identified: 1) trajectories of recovery, 2) back to 'some sort of normal' and 3) the importance of work. Resumed participation in activities of daily life, the influence of social determinants of health and the impact of contextual factors were prominent features in the recovery narratives.
Conclusions:
The COVID-19 pandemic presents both challenges and opportunities for public health systems to formulate appropriate responses and make improvements. Behind the case numbers, patient narratives described the uncertainty, diversity and multiple pathways to recovery that need to inform public health policy.
Implications for public health:
Looking beyond the case numbers reveals a complex landscape characterised by uncertainty, diversity and multiple pathways to recovery. The pandemic presents challenges and opportunities for public health in Australia and New Zealand, lived experience expertise is crucial to the formulation of an effective response.
... Whilst research has shed light on many aspects of CRPS pathology, longitudinal studies on symptom courses are scarce (Enax-Krumova et al., 2017). In particular, we still do not know which factors influence pain relief-the most pressing symptom for patients (Llewellyn et al., 2018). ...
... CRPS patients judge recovery based on pain relief, physical function and discontinuation of the medication. (Llewellyn et al., 2018) In our sample, nearly half the patients reported subjective disease improvement and pain relief. In several follow-up studies, pain was reduced between 0.8 points in 6 months and 2.5 points in 36 months (Bean et al., 2014;Reimer et al., 2016;Wittayer et al., 2018). ...
Background:
Complex regional pain syndrome (CRPS) is marked by disproportionate pain after trauma. While long-term outcome is crucial to patients, predictors or biomarkers of the course of pain or CRPS symptoms are still lacking. In particular, microRNAs, such as miR-223, decreased in CRPS, have been described only in cross-sectional studies.
Methods:
In this study, we characterised CRPS patients over a course of 2.5 years of standard treatment. Patient underwent clinical examination including pain measurement, symptom questionnaires, Quantitative Sensory Testing (QST) and blood sampling. Exosomal microRNA levels were measured via qPCR. After follow-up, patients were stratified into "pain relief" (mean pain reduced by ≥ 2 numeric rating scale) or "persistence" (mean pain unchanged or worsened). Primary outcome was miR-223 and miR-939 expression, secondary outcomes were differences in clinical parameters between groups and time points.
Results:
39 patients were included, 33 of whom qualified for stratification. Overall, patients reported lower pain and improved clinical characteristics after 2.5 years, but no significant changes in QST or miR-223 and miR-939 expression levels. 16 patients met criteria for pain relief. This was associated with stable exosomal miR-223 expression, while levels further decreased in pain persistence. Clinically, pain relief was marked by shorter disease duration and correlated positively with high initial pain.
Conclusion:
We identified progressively reduced miR-223 as putative biomarker of chronic CRPS pain. Clinically, this study underlines the importance of early diagnosis and treatment showing that high initial pain does not predict unfavourable outcome. Finally, pain relief and recovery of sensory disturbances seem independent processes.
... Uh, yes, we can see that [you're] not right. (N6, F, [30][31][32][33][34][35][36][37][38][39][40][41][42][43][44][45][46][47][48][49]HCW) In most narratives, being 'back to normal' involved more than just the resolution of symptoms. Most participants described how their participation in daily life changed as their recovery progressed; "I was feeling quite reckless, getting from our bedroom which was on the first floor, down to the kitchen and back again. ...
... However, there are some precedents which provide potential exemplars for service transformation. Patient definitions of recovery from other areas of practice 34,35 emphasise the personal meaning of individual recovery and how resuming participation in daily life is often the patient-defined endpoint of illness. As stated in the narratives, recovery from COVID-19 meant getting back to their personal normal. ...
... 22 The Delphi technique had been used successfully before by members of the research team to answer other questions in relation to the care and treatment of those with CRPS. 9,21 In the summer of 2018, a systematic literature search was conducted to identify outcome measures used in CRPS prospective and retrospective cohort and observational studies, pilot and feasibility studies, and randomised controlled trials from 2000 (Embase, MEDLINE, CINAHL Plus, AMED, and PsychINFO; 2000-2018; human; adult), and 2451 relevant articles were identified. After screening, 125 articles were retained, from which individual clinical outcomes reported could be extracted and summarised, eg, measures of activity, measures of allodynia, measures of grip strength, and psychological measures (the screening process is shown in Fig. 1). ...
... Forward and backward translation will be undertaken by COMPACT consortium research partners in each relevant country and will adhere to the "best practice" translation standards previously used by members of the study team. 21 This study used a robust consensus methodology to make recommendations for a minimum set of core clinical outcomes to be used as data fields in a future international research registry and data bank. These will complement the already agreed patient-reported outcome measures within the registry. ...
Complex regional pain syndrome (CRPS) clinical trials have historically captured a diverse range of outcomes. A minimum set of CRPS patient-reported outcomes has been agreed for inclusion in a future CRPS international clinical research registry and data bank. This study aimed to identify a complementary set of core clinical outcomes. Clinicians and researchers from the international CRPS community informed the content of a 2-round electronic Delphi study. Participation was invited from members of the International Association for the Study of Pain CRPS Special Interest Group and the International Research Consortium for CRPS. In round 1, participants rated the relevance of 59 clinical outcomes in relation to the question "What is the clinical presentation and course of CRPS, and what factors influence it?" (1 = not relevant and 9 = highly relevant). In round 2, participants rerated each outcome in the light of the round 1 median scores. The criterion for consensus was median score ≥7, agreed by 75% of respondents. The core study team considered the feasibility of data collection of each identified outcome in agreeing final selections. Sixty respondents completed both survey rounds, with responses broadly consistent across professions. Nine outcomes met the consensus criterion. Final outcomes recommended for inclusion in the core clinical set were record of medications, presence of posttraumatic stress disorder, extent of allodynia, and skin temperature difference between limbs. Study findings provide robust recommendations for core clinical outcome data fields in the future CPRS international clinical research registry. Alongside patient-reported outcomes, these data will enable a better understanding of CRPS.
... Beside clinical outcome parameters, it is essential to include the patient's perspective on recovery into treatment decision and definition of treatment response. In a survey, patients described improvement in pain, range of motion, stiffness and independence from medication as most relevant for their recovery [50]. ...
This work investigated phenotypes of complex regional pain syndrome (CRPS) with special interest in sensory abnormalities. Quantitative sensory testing (QST) was used to assess sensory function. In addition, clinical and sensory differences of fracture and CRPS patients were addressed. Finally, the longitudinal outcome of CRPS patients was part of this thesis.
... Eight participants had CRPS in a lower limb, 8 in an upper As there is no relevance for the management of CRPS according to evidence of nerve injury (Type 2 CRPS) or not (Type 1), this information was not obtained. 23,42 Further demographic information is available in Table 1. ...
... CRPS patient voice is recognised as important via the inclusion of patients on research teams and task forces. 8,22,28,42 It was used to generate the lived experience model (Fig 3) which could be a resource for both patients and HPs. It highlights patient issues which are not readily recognisable to most HPs. ...
Complex Regional Pain Syndrome (CRPS) has never comprehensively been examined from a lived experience perspective. Patients generally have a poorer quality of life than people with other chronic pain conditions. This study aimed to understand the essence of living with CRPS. Data were collected from 17 patients via in-depth interviews. Hermeneutic discussions with four health professionals generated deeper insights. Internet blogs and a book containing patient stories were included for theme verification and triangulation. CRPS is seen as a war-like experience and five themes were identified within the battle: "dealing with the unknown enemy", "building an armoury against a moving target", "battles within the war", "developing battle plans with allies" and "warrior or prisoner of war". Patients live with a chronic pain condition and experience problems unique to CRPS such as fear of pain extending to other parts of their body. Use of the model generated by this research may assist patient/clinician interactions and guide therapeutic discussions. Support for people living with CRPS does not always exist, and some healthcare professionals require additional education about the condition. Better health outcomes are experienced by patients when their personal situation and experiences are heard and understood by health care professionals.
PERSPECTIVE
This article presents the lived experience of CRPS. This information and the model generated can help clinicians to better understand their patients and deliver appropriate patient-centred care.
... individual's wellbeing, family relationships, ability to work and engagement in social or leisure pursuits [6]. People with CRPS often fall into a self-perpetuating cycle of pain and community withdrawal. ...
Objectives
Complex regional pain syndrome (CRPS) is a persistent pain condition which is often misunderstood and poorly managed. Qualitative studies are needed to explore the lived experience of the condition and to better understand patient perspectives on their management experiences and needs. The aim of this study was to explore the lived experience of CRPS in Australia, including exploration of their perceptions of care and advice received from healthcare professionals.
Methods
A qualitative study with individual in-depth semi-structured, face-to-face interviews was performed (n=15, 80% female, average time elapsed since diagnosis 3.8 years). Qualitative data were analysed using an inductive thematic analysis approach.
Results
Four main themes with associated subthemes were identified, representing the participants’ journey: (1) Life Changing Impact of CRPS (Subthemes: Impact on self, Impact on others); (2) Variable Experiences of Care (Subthemes: Helpful experiences of care, Unhelpful experiences of care); (3) Making Sense of CRPS (Subthemes: Knowledge and understanding, Dealing with unpredictability); and (4) Perceptions on Lessons Learned from Living with CRPS (Subthemes: Acceptance was an important part of the journey, Trial and error was necessary to find an individual way forward, Coping strategies).
Conclusions
The themes identified align to and expand on prior qualitative research findings in people with CRPS. It highlights the challenges people face related to their personal self, their close relationships and their social and work roles. It highlights the difficulties these people have in finding reliable, trust-worthy information. These findings suggest that healthcare professionals may benefit from education about how to better support people with CRPS, including helping people to navigate to the right care. Engaging people with CRPS in the development of educational resources should be a future research goal. It is recommended that patient perspectives are incorporated into the development of care pathways for CRPS.
... To determine which covariates to include in multivariate models, correlations were run between demographics, clinical characteristics, and outcome variables. Pearson's correlations showed that symptom duration (r (49) ¼0.30, P¼0.033) and total number of medications (NRS) (r (51) ¼0.28, P¼0.045) were positively associated with pain intensity (NRS). One-way ANOVA revealed that employment status was associated with pain intensity (measured by the NRS) (F (6,46) ¼3.91; P¼0.003), with participants receiving a sickness benefit or Accident Compensation Corporation (ACC) income reporting higher pain intensity than those who were employed fulltime. ...
... P¼0.018) were associated with greater disability. The inclusion of illness coherence in Step 2 also produced a significant model (F (3,49) ¼7.89; P <0.001) and explained a further 5% of the variance. Lower illness coherence (reporting a poorer understanding of CRPS) (b¼-0.25; ...
... For the depression model, the covariates negative affect and pain intensity (NRS) were entered in Step 1. This produced a significant model (F (2,49) ¼16.71; P <0.001) and explained 41% of the variance in depression scores. ...
Objective
Complex regional pain syndrome (CRPS) is a complex and often poorly understood condition, and people with CRPS will have diverse beliefs about their symptoms. According to the self-regulation model, these beliefs (termed “illness perceptions”) influence health behaviors and outcomes. Previous studies have found that psychological factors influence CRPS outcomes, but few studies have investigated CRPS patients’ illness perceptions specifically. The present study examined whether illness perceptions were related to pain intensity and other relevant outcomes in people with CRPS.
Methods
In this cross-sectional study, 53 patients with CRPS (type 1 and type 2) completed questionnaires assessing illness perceptions, pain, disability, and psychological factors. Multiple regression analyses were used to determine whether illness perceptions were associated with pain intensity, disability, depression, and kinesiophobia, after controlling for possible covariates (including clinical and demographic factors, pain catastrophizing, and negative affect).
Results
Negative illness perceptions were associated with greater pain, disability, and kinesiophobia, but not depression. Specifically, attributing more symptoms to CRPS (more negative illness identity perceptions) was associated with greater pain intensity, and reporting a poorer understanding of CRPS (lower illness coherence scores) was associated with greater disability and kinesiophobia.
Conclusions
Patients with CRPS with more negative illness perceptions (particularly perceptions indicating a poor understanding of their condition) also experience greater pain, disability, and kinesiophobia. Future research could investigate whether altering CRPS patients’ illness perceptions influences clinical outcomes.
... There is no definitive test for CRPS and so diagnosis is based on fulfilment of the Budapest criteria [2•]. Although there is no cure, early intervention should significantly improve outcomes [10,11] and we know that, for patients, amongst the most valued outcomes include functional improvement, as well as relief of pain [12]. ...
Purpose of the Review
Nonmedical therapeutic approaches are fundamental to the management of of Complex Regional Pain Syndrome (CRPS) in order to promote the best outcome for patients. This review focuses on three key approaches underpinning CRPS rehabilitation, namely, physiotherapy and occupational therapy, psychological approaches and education and self-management.
Recent Findings
Recently published European standards outline the quality of therapeutic care that people with CRPS must receive. Early initiated therapy is essential to optimise outcomes, underpinned by patient education. Therapists should promote early movement of the affected limb and encourage re-engagement with usual activities as immobilisation is known to have negative outcomes. There is evidence to support the possible long-term benefit of graded motor imagery and mirror therapy. Psychological assessment should include identification of depression and post-traumatic stress disorder, as treatment of these conditions may improve the trajectory of CRPS. Novel therapies include neurocognitive approaches and those addressing spatial bias, both of which should provide a focus for future research.
Summary
There exists a broad range of nonmedical therapeutic approaches to rehabilitation for CPRS that are thought to be important. However, the evidence for their efficacy is limited. Further research using standardised outcomes would be helpful in developing targeted therapies for the future.
