‘What I Really Needed Was the Truth’. Exploring the Information Needs of People with Complex Regional Pain Syndrome

Grieve, Sharon; Adams, Jo; McCabe, Candy

doi:10.1002/msc.1107

Cited by 23 publications

(28 citation statements)

References 39 publications

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“…As in every chronic disease, patients and their families should be informed about their condition, in order to realize the nature of their symptoms and the course of the disorder. 48 Education will also allow a more active participation of the patients in the management of their disease by enabling them to form their own understanding of the therapeutic strategy proposed by the physician, to build the knowledge and skills required for the rehabilitation process and to gain trust into this process, improving eventually their adherence to the treatment plan.…”

Section: Patient Information and Educationmentioning

confidence: 99%

Complex Regional Pain Syndrome: An update

Misidou¹,

Papagoras²

2019

MJR

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Complex regional pain syndrome (CRPS) is a perplexing painful syndrome of the extremities usually following a harmful event. It is distinguished in two types, mainly depending on the presence of nerve injury. Although its prevalence may vary depending on social and ethnic factors, middle-aged women seem to suffer most often and the upper limb is the most commonly affected extremity. Apart from pain, which is the dominating feature, the clinical picture unfolds across several domains: sensory, motor, autonomic and trophic. This syndrome develops in two phases, the acute (warm) phase, with the classic symptoms of inflammation, and the chronic (cold) phase, often characterized by trophic changes of the soft tissues and even bones. Although the syndrome has been studied for over two decades, no imaging or laboratory test has been established for the diagnosis and recently proposed diagnostic criteria have not yet been validated and are only occasionally applied. Its pathophysiology is still quite obscure, although the most likely mechanisms involve the classic and neurogenic paths of inflammation mediated by cytokines and neuropeptides, intertwined with changes of the autonomic and central nervous system, psychological mechanisms and, perhaps, autoimmunity. Although plenty of treatment modalities have been tried, none has been proven unequivocally efficacious. Apart from information and education, which should be offered to all patients, the most effective pharmacological treatments seem to be bisphosphonates, glucocorticoids and vasoactive mediators, while physical therapy and rehabilitation therapy also make part of the treatment.

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Section: Patient Information and Educationmentioning

confidence: 99%

Complex Regional Pain Syndrome: An update

Misidou¹,

Papagoras²

2019

MJR

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“…Prior to the publication of the European Standards [16••] there was a dearth of guidance about best practice. To date, a lack of understanding of CRPS, its management and potential outcomes has been reported by those with the condition [61][62][63]. This may lead to poor engagement with rehabilitation and self-management strategies.…”

Section: Education and Self-managementmentioning

confidence: 99%

“…However, there is evidence of conflicting and outdated information provided by some health professionals [62][63][64][65]. The challenge is to provide health professionals, who are the first point of contact for those presenting with CRPS, with easy access to high quality, recommended resources which can be shared with the patient.…”

Section: Education and Self-managementmentioning

confidence: 99%

The Role of Nonmedical Therapeutic Approaches in the Rehabilitation of Complex Regional Pain Syndrome

Boichat

Llewellyn

Grieve

et al. 2020

Curr Treat Options in Rheum

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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 * The Author(s) 2020 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.

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“…Unmet needs for rehabilitative treatments and potential barriers to treatment access should be assessed in patients with CRPS, but their rehabilitation needs have rarely been investigated [18]. A previous qualitative study reported that a lack of access to accurate information was a major unmet need in patients with CRPS [19]. In Korea, rehabilitative treatment is not provided appropriately to patients with CRPS due to a lack of awareness of rehabilitation options available for both patients and healthcare professionals.…”

Section: Introductionmentioning

confidence: 99%

Understanding the Rehabilitation Needs of Korean Patients With Complex Regional Pain Syndrome

et al. 2020

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Objective To evaluate the current status of pain severity and quality of life (QoL) in patients with complex regional pain syndrome (CRPS), and to assess both their perceived needs and any unmet needs of current rehabilitation services. Methods A single-center questionnaire-based survey was conducted on 47 patients with CRPS who were diagnosed based on Budapest’s criteria. It collected demographic and clinical data, and the structured questionnaire included the Brief Pain Inventory (BPI), the Korean version of the World Health Organization Disability Assessment Schedule II (WHODAS-K II), as well as the 5-Level EuroQol-5D (EQ-5D-5L) for measuring the QoL. Results The average value of BPI and WHODAS-K II were 7.69%±2.26% and 70.49%±19.22%, respectively. In the evaluation of their perceived needs and unmet needs for rehabilitation, patients had the highest rehabilitation needs in terms of pain (95.74%), followed by bodyaches (80.85%). Regarding their unmet needs, patients had the highest unmet needs in terms of memory impairment (83.33%), followed by weight management (72.00%). According to the regression analysis, only the overall BPI was significantly associated with QoL (p=0.01), and a higher BPI value led to poorer results for QoL. Conclusion In Korea, patients with CRPS do not receive adequate rehabilitation, and they are not satisfied with current received treatments. A more structured and individualized rehabilitation treatment plan is required to manage every aspect related to chronic pain, and provision should be made for improved care guidelines for future CRPS management.

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‘What I Really Needed Was the Truth’. Exploring the Information Needs of People with Complex Regional Pain Syndrome

Cited by 23 publications

References 39 publications

Complex Regional Pain Syndrome: An update

Complex Regional Pain Syndrome: An update

The Role of Nonmedical Therapeutic Approaches in the Rehabilitation of Complex Regional Pain Syndrome

Understanding the Rehabilitation Needs of Korean Patients With Complex Regional Pain Syndrome

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