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).

Rehabilitation for patients with rheumatic diseases: Patient experiences of a structured goal planning and tailored follow-up programme.

OBJECTIVE: To explore the significance of the content of rehabilitation in terms of achieving a personal outcome, and to understand the significance of tailored follow-up interventions for individual efforts to prolong health behaviour change after rehabilitation. DESIGN: Semi-structured interviews with patients who had received an extended rehabilitation programme. All interviews were transcribed verbatim. A thematic analysis was applied. SUBJECTS: A purposeful sample of 18 patients with rheumatic diseases who had attended specialized multidisciplinary rehabilitation with an extended programme consisting of a self-help booklet, structured goal-setting talks and tailored follow-up calls based on motivational interviewing. RESULTS: Four overarching and interrelated themes were identified. Experienced Person-centred interventions represented a basis for the patients' motivation and personal outcomes. Confident self-management describes a new confident approach to exercise and illness management after rehabilitation with person-centred interventions. For many, this included reaching a different mindset, a change of illness perception. Continuity of the personal outcomes describes the importance of follow-up telephone calls to maintain the focus on goals and continued efforts. Building on established relationships and practising person-centred communication were essential. CONCLUSION: Tailoring of communication and rehabilitation interventions may be a premise for enhancing health behaviour, including a beneficial illness perception. Structured goal setting and follow-up telephone calls using motivational interviewing enhance motivation and may contribute to prolonged goal attainment.

A smartphone-based intervention with diaries and therapist feedback to reduce catastrophizing and increase functioning in women with chronic widespread pain. part 2: 11-month follow-up results of a randomized trial.

BACKGROUND: Internet-based interventions are increasingly used to support self-management of individuals with chronic illnesses. Web-based interventions may also be effective in enhancing self-management for individuals with chronic pain, but little is known about long-term effects. Research on Web-based interventions to support self-management following participation in pain management programs is limited. OBJECTIVE: The aim is to examine the long-term effects of a 4-week smartphone-intervention with diaries and therapist-written feedback following an inpatient chronic pain rehabilitation program, previously found to be effective at short-term and 5-month follow-ups. METHODS: 140 women with chronic widespread pain, participating in a 4-week inpatient rehabilitation program, were randomized into two groups: with or without a smartphone intervention after the rehabilitation. The smartphone intervention consisted of one face-to-face individual session and 4 weeks of written communication via a smartphone, consisting of three diaries daily to elicit pain-related thoughts, feelings, and activities, as well as daily personalized written feedback based on cognitive behavioral principles from a therapist. Both groups were given access to an informational website to promote constructive self-management. Outcomes were measured with self-reported paper-and-pencil format questionnaires with catastrophizing as the primary outcome measure. Secondary outcomes included daily functioning and symptom levels, acceptance of pain, and emotional distress. RESULTS: By the 11-month follow-up, the favorable between-group differences previously reported post-intervention and at 5-month follow-up on catastrophizing, acceptance, functioning, and symptom level were no longer evident (P>.10). However, there was more improvement in catastrophizing scores during the follow-up period in the intervention group (M=-2.36, SD 8.41) compared to the control group (M=.40, SD 7.20), P=.045. Also, per protocol within-group analysis showed a small positive effect (Cohen's d=.33) on catastrophizing in the intervention group (P=.04) and no change in the control group from the smartphone intervention baseline to 11-month follow-up. A positive effect (Cohen's d=.73) on acceptance was found within the intervention group (P<.001) but not in the control group. Small to large negative effects were found within the control group on functioning and symptom levels, emotional distress, and fatigue (P=.05) from the intervention baseline to the 11-month follow-up. CONCLUSION: The long-term results of this randomized trial are ambiguous. No significant between-group effect was found on the study variables at 11-month follow-up. However, the within-group analyses, comparing the baseline for the smartphone intervention to the 11-month data, indicated changes in the desired direction in catastrophizing and acceptance in the intervention group but not within the control group. This study provides modest evidence supporting the long-term effect of the intervention. TRIAL REGISTRATION: Clinicaltrials.gov NCT01236209; http://www.clinicaltrials.gov/ct2/show/NCT01236209 (Archived by WebCite at http://www.webcitation.org/6FF7KUXo0).

A smartphone-based intervention with diaries and therapist-feedback to reduce catastrophizing and increase functioning in women with chronic widespread pain: randomized controlled trial.

BACKGROUND: Internet-based interventions using cognitive behavioral approaches can be effective in promoting self-management of chronic pain conditions. Web-based programs delivered via smartphones are increasingly used to support the self-management of various health disorders, but research on smartphone interventions for persons with chronic pain is limited. OBJECTIVE: The aim of this trial was to study the efficacy of a 4-week smartphone-delivered intervention with written diaries and therapist feedback following an inpatient chronic pain rehabilitation program. METHODS: A total of 140 women with chronic widespread pain who participated in a 4-week inpatient rehabilitation program were randomized into 2 groups: with or without a smartphone intervention after the rehabilitation. The smartphone intervention consisted of 1 face-to-face session and 4 weeks of written communication via a smartphone. Participants received 3 smartphone diary entries daily to support their awareness of and reflection on pain-related thoughts, feelings, and activities. The registered diaries were immediately available to a therapist who submitted personalized written feedback daily based on cognitive behavioral principles. Both groups were given access to a noninteractive website after discharge to promote constructive self-management. Outcomes were measured with self-reported questionnaires. The primary outcome measure of catastrophizing was determined using the pain catastrophizing scale (score range 0-52). Secondary outcomes included acceptance of pain, emotional distress, functioning, and symptom levels. RESULTS: Of the 140 participants, 112 completed the study: 48 in the intervention group and 64 in the control group. Immediately after the intervention period, the intervention group reported less catastrophizing (mean 9.20, SD 5.85) than the control group (mean 15.71, SD 9.11, P<.001), yielding a large effect size (Cohen's d=0.87) for study completers. At 5-month follow-up, the between-group effect sizes remained moderate for catastrophizing (Cohen's d=0.74, P=.003), acceptance of pain (Cohen's d=0.54, P=.02), and functioning and symptom levels (Cohen's d=0.75, P=.001). CONCLUSIONS: The results suggest that a smartphone-delivered intervention with diaries and personalized feedback can reduce catastrophizing and prevent increases in functional impairment and symptom levels in women with chronic widespread pain following inpatient rehabilitation. TRIAL REGISTRATION: Clinicaltrials.gov NCT01236209; http://www.clinicaltrials.gov/ct2/show/NCT01236209 (Archived by WebCite at http://www.webcitation.org/6DUejLpPY).

Written online situational feedback via mobile phone to support self-management of chronic widespread pain: a usability study of a Web-based intervention.

BACKGROUND: This pretrial study aimed to develop and test the usability of a four-week Internet intervention delivered by a Web-enabled mobile phone to support self-management of chronic widespread pain. METHODS: The intervention included daily online entries and individualized written feedback, grounded in a mindfulness-based cognitive behavioral approach. The participants registered activities, emotions and pain cognitions three times daily using the mobile device. The therapist had immediate access to this information through a secure Web site. The situational information was used to formulate and send a personalized text message to the participant with the aim of stimulating effective self-management of the current situation. Six women participated and evaluated the experience. RESULTS: The intervention was rated as supportive, meaningful and user-friendly by the majority of the women. The response rate to the daily registration entries was high and technical problems were few. CONCLUSION: The results indicate a feasible intervention. Web-applications are fast becoming standard features of mobile phones and interventions of this kind can therefore be more available than before. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov: NCT01236209.

[Rehabilitation of chronic myofascial pain disorders]. / Rehabilitering ved kroniske myofascielle smertetilstander.

BACKGROUND: Chronic musculoskeletal pain of diffuse origin affects many, and at a significant cost. Evidence-based guidelines for therapeutic interventions are presented and exemplified. MATERIAL AND METHODS: 200 patients with chronic myofascial pain and/or fibromyalgia who participated in a 4-week multidimensional rehabilitation programme, were included in the study. The programme included education and pain management in a cognitive setting, various forms of aerobic exercises, myofascial pain treatment, relaxation and medication as needed. The patients filled in questionnaires on arrival, at follow-up after six and 12-months and at discharge. They completed visual analogue scales (pain, fatigue, sleep problems, depression), the Nottingham Health Profile, the Fibromyalgia Impact Questionnaire, global subjective improvement, and during the follow-up period also the physical activity level, changes in quality of life and occupational workload. Work capacity, a tender point count and whether patients met the diagnostic criteria for fibromyalgia were assessed at baseline and at discharge. RESULTS: Significant improvements were seen in all variables throughout the follow-up period. 30% of the fibromyalgia patients no longer met the diagnostic criteria at discharge. There was a significant increase in quality of life over time. After one year, more patients had returned to work and fewer were off sick, but there was also an increased number on disability pensions. The majority did exercise training on a regular basis. INTERPRETATION: Our findings confirm the existing evidence-based guidelines by showing that multidimensional rehabilitation is an effective intervention for patients with widespread chronic pain. It is a challenge for health politicians to change today's common practice towards that described in evidence-based guidelines.

Depressed mood impedes pain treatment response in patients with fibromyalgia.

OBJECTIVE: To investigate prognostic factors in the course of the fibromyalgia syndrome (FM) from baseline to post-treatment. METHODS: Fifty-seven patients with FM were examined in a randomized intervention study. Pre-treatment variables were entered into linear regression analyses: gender, age, duration of disease, allocation to treatment, pain distribution (based on a patient-made drawing), fatigue, sleep disturbance, and depressed mood (based on visual analog scores), with pain distribution at treatment completion as the dependent variable. RESULTS: Depressed mood at baseline was a significant predictor of sustained widespread pain at treatment completion. CONCLUSION: The findings indicate a role for depressed mood as a predictive factor for treatment response.

[Fibromyalgia--an update]. / Fibromyalgi--en oppdatering.

BACKGROUND: Fibromyalgia is a common, female dominated condition, characterized by chronic widespread pain, fatigue, sleep disturbance, anxiety/depression and a number of other symptoms. The syndrome's aetiology and treatment is disputed. However, research over the last decade has provided substantial new information. MATERIAL AND METHODS: This review is an update on fibromyalgia with respect to predictors, pathogenesis and treatment. On the basis of a number of important scientific publications, the most relevant theory is presented and discussed. RESULTS: Fibromyalgia may be described as a biopsychosocial disorder in which long lasting distress, myofascial pain, central sensitisation, sickness behaviour, anxiety/depression, neuroendocrine and autonomic dysfunction play central aetiological roles as elements in a vicious circle. Treatment should be focused on each of these elements and requires active patient participation. It is best given as a multidimensional, multidisciplinary rehabilitation programme with continuous support from the general practitioner. INTERPRETATION: Even though the fibromyalgia riddle is not yet fully solved, research over the last decade has given valuable new information on pathogenesis and treatment. We should be able to offer our patients substantial help on the basis of present knowledge.