Healthcare experiences of fibromyalgia patients and their associations with satisfaction and pain relief. A patient survey.

OBJECTIVES: The etiology of fibromyalgia (FM) is disputed, and there is no established cure. Quantitative data on how this may affect patients' healthcare experiences are scarce. The present study aims to investigate FM patients' pain-related healthcare experiences and explore factors associated with high satisfaction and pain relief. METHODS: An anonymous, online, and patient-administered survey was developed and distributed to members of the Norwegian Fibromyalgia Association. It addressed their pain-related healthcare experiences from both primary and specialist care. Odds ratios for healthcare satisfaction and pain relief were estimated by binary logistic regression. Directed acyclic graphs guided the multivariable analyses. RESULTS: The patients (n = 1,626, mean age: 51 years) were primarily women (95%) with a 21.8-year mean pain duration and 12.7 years in pain before diagnosis. One-third did not understand why they had pain, and 56.6% did not know how to get better. More than half had not received satisfactory information on their pain cause from a physician, and guidance on how to improve was reported below medium. Patients regretted a lack of medical specialized competence on muscle pain and reported many unmet needs, including regular follow-up and pain assessment. Physician-mediated pain relief was low, and guideline adherence was deficient. Only 14.8% were satisfied with non-physician health providers evaluating and treating their pain, and 21.5% were satisfied (46.9% dissatisfied) with their global pain-related healthcare. Patients' knowledge of their condition, physicians' pain competence and provision of information and guidance, agreement in explanations and advice, and the absence of unmet needs significantly increased the odds of both healthcare satisfaction and pain relief. CONCLUSIONS: Our survey describes deficiencies in FM patients' pain-related healthcare and suggests areas for improvement to increase healthcare satisfaction and pain relief. (REC# 2019/845, 09.05.19).

Mortality and causes of death across the systemic connective tissue diseases and the primary systemic vasculitides.

Objectives: Studies assessing relative mortality risks across the spectrum of systemic inflammatory rheumatic diseases are largely missing. In this study, we wanted to estimate standard mortality ratios (SMRs) and causes of death in an ethnically homogeneous cohort covering all major CTDs and primary systemic vasculitides (PSVs). Methods: We prospectively followed all incident CTD and PSV cases included in the Norwegian CTD and vasculitis registry (NOSVAR) between 1999 and 2015. Fifteen controls for each patient matched for sex and age were randomly drawn from the Norwegian National Population Registry. Causes of death were obtained from the National Cause of Death Register, death certificates and hospital charts. Results: The cohort included 2140 patients (1534 with CTD, 606 with PSV). During a mean follow-up time of 9 years, 279 of the patients (13%) died, compared with 2864 of 32 086 (9%) controls (P < 0.001). Ten years after diagnosis, the lowest survival was 60% in dcSSc, 73% in anti-synthetase syndrome (ASS) and 75% in lcSSc. In the CTD group, the highest SMRs were observed in dcSSc (SMR 5.8) and ASS (SMR 4.1). In the PSV group, Takayasu arteritis (SMR 2.5) and ANCA-associated vasculitis (SMR 1.5) had the highest SMRs. Major causes of death were cardiovascular disease (CTD 27%, PSV 28%), neoplasms (CTD 25%, PSV 27%), chronic respiratory disease (CTD 20%, PSV10%) and infections (CTD 9%, PSV 16%). Conclusion: We observed premature deaths across the spectrum of CTDs and PSVs, with highest SMRs in dcSSc and ASS. The overall mortality was highest in the CTD group.

Effect of a fibromyalgia rehabilitation programme in warm versus cold climate: a randomized controlled study.

OBJECTIVE: To study the long-term effects on symptoms and physical function of a 4-week rehabilitation programme for patients with fibromyalgia, and to determine whether there are any differences if this programme is applied in a warm or cold climate. METHODS: A total of 132 patients with fibromyalgia were randomized to a rehabilitation programme in a warm or cold climate, or to a control group without intervention. Assessments were performed before and after intervention, and after 3 and 12 months. The main outcome measures were pain, measured by tender point count (TPC), and physical function, measured with the 6-min walk test (6MWT). RESULTS: There was no difference in any outcome variables at baseline. Persistent reduction in pain measured by TPC occurred only in the warm climatic setting. Mean difference (95% confidence interval (CI)) in TPC between warm and cold climate groups 1 year after the intervention was -1.7 (-2.9 to -0.5) and between the warm climate and the control group -2.2 (-3.3 to -1.0). Three months after the intervention the mean difference between the warm and cold climate groups in pain distribution (McGill mannequin) was -12 (-20 to -5) and between the warm climate and the control group -11 (-18 to -3). There were comparable improvements in physical function (6MWT) between the 2 intervention groups and the control group. The mean difference (95% CI) in 6MWT 1 year after the intervention between the warm climate and the control group was 33 (7-59) m. The corresponding value between the cold climate and the control group was 29 (3-55) m. Grip Strength (95% CI) was increased by 4.6 kg (2.3-6.4) in the warm climate and by 3.2 kg (0.9-5.5) in the cold climate compared with the control group 1 year after the intervention. CONCLUSION: A rehabilitation programme for fibromyalgia may have a long-term effect on pain, as measured by TPC and pain distribution, when applied in a warm climatic setting, and may improve physical function regardless of the climatic setting.

Comprehensive rehabilitation of patients with rheumatic diseases in a warm climate: a literature review.

OBJECTIVE: To present the evidence for the efficacy of comprehensive rehabilitation in a warm climate of patients with a wide variety of rheumatic diseases. METHODS: A systematic review of the literature was undertaken, searching in PubMed, Cinahl, Pedro, SweMed and Embase from 1970 to 2010, and using the GRADE (Grading of Recommendations, Assessment, Development and Evaluation system) criteria. RESULTS: Six studies met the inclusion criteria. For patients with rheumatoid arthritis, moderate evidence was found for reduction of disease activity, pain, fatigue, and global disease impact. The evidence was also moderate that comprehensive rehabilitation in a warm climate did not improve fitness or reduce activity limitation beyond levels reached by rehabilitation in Scandinavia. Among patients with ankylosing spondylitis, low evidence was found for reduction of disease activity, pain, joint range of motion, activity limitation, and global disease impact. In groups with mixed rheumatic diagnoses, low evidence was found for reduction of pain, activity limitation, global disease impact and improved health-related quality of life. No studies on psoriatic arthritis, osteoarthritis, fibromyalgia or osteoporosis were found. CONCLUSION: Well-designed studies to validate and improve the low-to-moderate evidence found for the efficacy of comprehensive rehabilitation in a warm climate among patients with inflammatory rheumatic disease are greatly needed.

Semi-quantitative assessment of the distribution of skin lesions in patients with psoriasis and psoriasis arthritis.

BACKGROUND: We propose that the distribution of skin lesions in psoriasis may be assessed using parametric maps on a pixel-by-pixel basis. MATERIAL AND METHODS: We processed 428 patient-drawn self-descriptions of the psoriasis lesions on a supplied body template. We compared 195 patients with a confirmed diagnosis of psoriatic arthritis (PsA) with 89 who had this diagnosis rejected (Psor). Additionally, 28 Psor cases supplied drawings performed after 3 weeks of climate therapy (PsorCT) to test the treatment efficacy. The drawings were scanned, lesion areas were segmented, followed by construction of parametric maps of lesion distributions and calculation of statistical differences between groups. RESULTS AND DISCUSSION: In PsorCT, the lesions occupied 11.2% (0-42%) [median (min.-max.)] of the body area. The area decreased to 2.4% (6-11%) after heliotherapy. The differences were statistically significant for all the areas studied and spread evenly over the body surface. PsA had a relatively low psoriasis lesion occupancy of 2.5% (0-42%) compared with Psor 9.8% (0-34%), which is attributed to the difference in recruitment. Correcting for this, we demonstrate a clear tendency for the head, palms, feet, groin and nails to be preferred lesion sites in PsA in contrast to psoriasis. CONCLUSION: Pixel-based analysis of self-reported skin lesion distributions is a powerful tool to assess systematic differences due to treatment or disease variants.

[Treatment of rheumatic patients in a warm climate abroad]. / Utenlandsbehandling av pasienter med revmatisk sykdom.

Adult rheumatic and psoriatic patients in Norway have been offered state-funded treatment in a warm climate since 1976. The offer has since then been extended to other patient groups with chronic diseases. We here present a program, which mainly consists of intensive physical treatment in a warm, sunny and dry climate, for adults with chronic rheumatic disease. The article is based on available statistics and literature found by searching Medline, PubMed and Cochrane. Patients are selected for the program according to diagnosis, physical function and disease severity and activity. The majority of the patients have rheumatoid arthritis, ankylosing spondylitis or psoriatic arthritis. The treatment is demanding and is not suitable for all. There are two closing dates for applications, 1. October and 1. February.