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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.

The study sought to examine women's experience of painful endometriosis including long-term aspects, social consequences, impact of treatment and development of own coping strategies.This qualitative study was based on 16 individual interviews analyzed according to grounded theory. The thirteen women (age 24-48) were recruited at a pain clinic in Stockholm, Sweden.A theory illustrating women's experience of living with painful endometriosis was developed with three categories and one core category. Bidirectional interactions between the categories and with the core category were found. Endometriosis influenced the women's sensations, feelings and reactions, creating a sense of difference from other women (category: Woman with painful endometriosis). The condition led to either helpful or harmful encounters with health care and significant others (category: Dependence). It also had overall physical, social and existential consequences (category: A ruined life). To cope, the women had to struggle for coherence by searching for understanding, coping and meaning (core category: Living with painful endometriosis).Living with severe painful endometriosis signified a struggle for coherence. The women needed to deal with feelings of difference, dependence and a ruined life and thus struggled for understanding, coping and meaning. Health-care providers should promote the struggle for coherence by explaining the feeling of difference, minimizing dependence and supporting the process of disease-related grief.

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), painrelated 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.

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 EQVAS (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.

Aims To explore how women perceive and are affected by treatment for painful endometriosis. Method Qualitative methodology with emergent design was used. Sixteen semi-structured interviews (including 3 follow-ups) with 13 women (age 20–47) treated at a pain clinic, were analysed with Grounded Theory. Results A preliminary model describes how women experience treatment for painful endometriosis and its consequences in one core category and three categories. The core category; Surviving painful endometriosis, described the women’s promoting strategies like Knowledge, Adaption and Planning, and inhibiting reactions as Anxiety and Resignation. The three interacting categories; Woman with painful endometriosis, included experiences of “The self” and “The body”. “The environment/significant others” described the environments’ support. Missed opportunities were described as a lack of participation in important life areas; “Social life”, “Career” and “Descendants”. “New possibilities” were experienced when pain disappeared or could be controlled. Dependent on health care included the experiences of “Treatments” from helpful to harmful and “Encounters with health care” from empowering to humiliating. Conclusions The suffering of women when exposed to painful endometriosis can lead to missed opportunities in several important areas of life. Hormonal and symptomatic treatments, as well as positive encounters of health care are important for the women’s possibility to develop working surviving strategies.