Interdisciplinary pain rehabilitation for patients with Ehlers-Danlos syndrome and hypermobility spectrum disorders.

OBJECTIVE: Chronic pain is a common manifestation of Ehlers-Danlos syndrome and hypermobility spectrum disorders; thus it is often suggested that patients undergo generic interdisciplinary pain rehabilitation, despite there being little evidence to support this decision. The aim of this study is to examine the effectiveness of standard rehabilitation programmes for chronic pain on patients with Ehlers-Danlos syndrome and hypermobility spectrum disorders, compared with patients with other chronic pain disorders. SUBJECTS: Data, collected between 2008 and 2016, were extracted from a Swedish national registry. The patient data comprised of 406 cases with Ehlers-Danlos syndrome or hypermobility spectrum disorders, 784 cases with a whiplash-related diagnosis, 3713 cases with diagnoses relating to spinal pain, and 2880 cases of fibromyalgia. METHODS: The differences between groups on key outcome measures from pre- to 1-year follow-up after interdisciplinary pain rehabilitation were analysed using linear mixed effects models. Sensitivity analysis in the form of pattern-mixture modelling was conducted to discern the impact of missing data. RESULTS: No significant differences were found in improvements from pre- to 1-year follow-up for patients with Ehlers-Danlos syndrome or hypermobility spectrum disorder compared with other diagnostic groups regarding measures of health-related quality of life, mental health, or fatigue. At follow-up, differences in pain interference (d = -0.34 (95% confidence interval [95% CI] -0.5 to -0.18)), average pain (d = 0.22 (95% CI 0.11-0.62)) and physical functioning (d = 2.19 (95% CI 1.61-2.77)) were detected for the group with spinal-related diagnoses in relation to those with EDS/HSD, largely due to pre-treatment group differences. Sensitivity analysis found little evidence for missing data influencing the results. CONCLUSION: This study suggests that patients with Ehlers-Danlos syndrome/hypermobility spectrum disorders may benefit from inclusion in an interdisciplinary pain rehabilitation programme.

Ehlers-Danlos Syndrome and Hypermobility Syndrome Compared with Other Common Chronic Pain Diagnoses-A Study from the Swedish Quality Registry for Pain Rehabilitation.

Although chronic pain is common in patients with Ehlers-Danlos syndrome (EDS) and hypermobility syndromes (HMS), little is known about the clinical characteristics of these groups. The main aim was to compare EDS/HMS with common local and generalized pain conditions with respect to Patient Reported Outcome Measures (PROMs). Data from the Swedish Quality Register for Chronic Pain (SQRP) from 2007 to 2016 (n = 40,518) were used, including patients with EDS/HMS (n = 795), fibromyalgia (n = 5791), spinal pain (n = 6693), and whiplash associated disorders (WAD) (n = 1229). No important differences in the PROMs were found between EDS and HMS. Women were represented in > 90% of EDS/HMS cases and fibromyalgia cases, and in about 64% of the other groups. The EDS/HMS group was significantly younger than the others but had a longer pain duration. The pain intensity in EDS/HMS was like those found in spinal pain and WAD; fibromyalgia had the highest pain intensity. Depressive and anxiety symptoms were very similar in the four groups. Vitality-a proxy for fatigue-was low both in EDS/HMS and fibromyalgia. The physical health was lower in EDS/HMS and fibromyalgia than in the two other groups. Patients with EDS/HMS were younger, more often female, and suffered from pain for the longest time compared with patients who had localized/regional pain conditions. Health-care clinicians must be aware of these issues related to EDS/HMS both when assessing the clinical presentations and planning treatment and rehabilitation interventions.

Assessment and treatment at a pain clinic: A one-year follow-up of patients with chronic pain.

BACKGROUND AND AIMS: Pain is one of the most common reasons for patients to seek primary health care. Pain relief is likely to be achieved for patients suffering from acute pain, but for individuals with chronic pain it is more likely that the condition will persist. These patients have the option of being referred to specialised pain clinics. However, the complexity surrounding chronic pain patients is not well studied in these settings. This study aimed to describe patients with chronic pain referred to a pain clinic by using the information submitted during their first visit and one year later and also to identify associations between baseline characteristics and improvements in health-related quality of life in the follow-up. METHODS: This was a longitudinal observational study of a sample consisting of 318 patients referred to a pain clinic. One group of patients containing 271 individuals (median age 48, 64% females) was assessed and received conventional pain treatment (CPT group) and a second group of 47 patients (median age 53, 64% females) was assessed by a pain specialist and referred back to their physician with a treatment recommendation (assessment only, AO group). Patient-reported outcome measures in health-related quality of life (EQ-5D), pain intensity (VAS), mental health (HADS), insomnia (ISI), pain-related disability (PDI), kinesiophobia (TSK) and sense of coherence (SOC) were collected at the first visit and one year later. RESULTS: At baseline, the CPT group reported a low EQ-5D Index (median (md) 0.157) and EQ VAS (md 40) as well as considerable high, current pain intensity VAS (md 58), HADS anxiety (md 8), ISI (md 17), PDI (md 36) and TSK (md 39). The AO group showed similar problems (no significant differences compared to the CPT group), except for ISI, where the AO group reported less severe problems. At the one-year follow-up, the CPT group had a statistically significant improvement in EQ-5D, VAS, ISI, PDI and TSK. In the AO group no significant changes were observed. In the CPT group there was an association between a high ISI level at baseline and an improved EQ-5D Index in the follow-up. CONCLUSIONS: The study describes rarely explored groups of patients with chronic pain at a pain clinic. Severe pain problems were present in both groups at their first visit. A statistically significant improvement could be seen in the group that was conventionally treated while this was not the case among those subjects who were assessed and referred. The results imply, that relatively limited treatment strategies were helpful for the patients' health-related quality of life. Despite these improvements, the patients were not fully recovered, pointing to the chronicity of pain conditions and the need of support for many patients. IMPLICATIONS: Increased knowledge about assessment, selection and treatment at pain clinics is important to improve the quality of the work performed at these clinics. Despite limited resources, further efforts should be made to collect comparable, valid data on a regular base from pain clinics in order to develop recommendation models.

Patients with chronic pain: One-year follow-up of a multimodal rehabilitation programme at a pain clinic.

BACKGROUND AND AIMS: Multimodal rehabilitation (MMR) programmes, including, physical training, educational and psychological interventions by an interdisciplinary team are found to be more successful for patients with disabling chronic pain compared with less comprehensive treatments. MMR programmes are based on the biopsychosocial model and the goal is usually to improve function, quality of life and facilitate and enable return to work. As pain clinics traditionally offer conventional medical pain treatment, there is limited knowledge about MMR given in this context. The aim of our study was to describe characteristics of patients with chronic pain, treated with a MMR programme at a conventional pain clinic, to evaluate patient-reported outcome measures (PROM) from start to one year after, and to study possibly associated factors for the improvement of health-related quality of life after one year. METHODS: A prospective, observational study with a one-year follow-up was performed. SUBJECTS: A total of 42 individuals (38 females, age 44.0±12.3 years and 4 men age 40±8.5 years) with different pain diagnoses were included. After a team assessment, the patients began a programme that lasted about three months. The MMR programme contained coordinated, individually adapted treatments administered individually or in groups, and was based on cognitive behavioural principles. Questionnaires regarding health-related quality of life (HRQoL) (EQ-5D), insomnia (ISI), mental health (HADS), pain-related disability (PDI), kinesiophobia (TSK), current pain intensity (VAS) and sense of coherence (SOC) were used at the start of the MMR and at follow-up. Demographic data were collected from the patient records. RESULTS: The PROM at baseline showed substantial pain problems with low HRQoL (EQ-5D index of 0.1±0.282, and EQ VAS of 32.67±20.1), moderate insomnia (ISI 18.95±6.7), doubtful cases of depression and anxiety (HADS-depression 9.35±4.1 and HADS-anxiety 9.78±3.95), presence of pain-related disability (PDI 39.48 ±12.64), kinesiophobia (TSK 40.8±9.8), as well as moderate current pain (VAS 61.31±20.4). The sense of coherence was weak (SOC of 51.37±14). At one-year follow-up, significant (p≤0.05) improvement occurred on the EQ-5D index, EQ VAS, ISI, PDI and TSK. In the logistic regression analysis, no significant associations could be identified. CONCLUSIONS: MMR for patients with complex pain problems can be a successful treatment alternative at conventional pain clinics. IMPLICATIONS: Since access to rehabilitation clinics in Sweden may be limited, the availability of MMR can increase by providing this type of intervention in pain clinics. Increased knowledge of MMR in different settings can also contribute to increased understanding and collaboration between pain clinics and rehabilitation units.

"Change is possible": Patients' experience of a multimodal chronic pain rehabilitation programme.

OBJECTIVE: To explore patients' experiences of activity, participation and quality of life one year after a rehabilitation programme for chronic pain, and to determine the impact of the programme on their current life situation. DESIGN: Qualitative study with emergent design. SUBJECTS AND METHODS: The 14 informants were patients with chronic pain who had participated in rehabilitation at a pain clinic. Individual semi-structured interviews were analysed with inductive, qualitative content analysis. RESULTS: The core theme "Change is possible" and the themes "A life ruled by pain" (the situation before rehabilitation), "The penny's dropped" (experience during rehabilitation) and "Live a life, not only survive" (the situation at the time of the interviews) emerged from the data. These themes represent a process through which, during and after rehabilitation, the informants integrated earlier disabling symptoms into a functioning lifestyle. CONCLUSION: Individuals living with disabling chronic pain can create a better life by integrating their illness. A prerequisite is that healthcare professionals empower patients to develop the strength to take responsibility for their daily lives. This process is facilitated by skills to reduce pain and handle life, plus support from significant others.