Fibromyalgia is a common and complex long-term pain condition. Despite advancements in our understanding and treatment of fibromyalgia, patients report patchy health care provision and frustrating journeys through the health care system. To inform how best to deliver care, we undertook 2 narrative reviews examining existing evidence on (1) models of care for fibromyalgia and (2) patients' experiences, preferences, and unmet needs regarding their health care. Seven databases were systematically searched. Quantitative data was narratively synthesised and qualitative data thematically analysed. No evidence-based model of care covering the patient journey through the entire health care system was identified. Limited evidence suggests no clear benefit for ongoing care in secondary care settings. Patients with fibromyalgia report difficult interactions with the health care system that might equally be expressed by those with other longterm conditions, such as inconsistent and poorly coordinated care. However, they also face unique problems; fibromyalgia was often not viewed as a real condition, resulting in difficult encounters with health care staff, in particular not feeling believed or listened to. Significant delays in diagnosis were commonplace. Positive care experiences such as being listened to and shared decision-making made patients feeling better informed, well supported, and more satisfied. There is little evidence to inform how best to organise health care for patients with fibromyalgia and ensure care is delivered in a coordinated and consistent way. These findings provide a strong rationale for developing a new model of care for fibromyalgia.
Objective. To compare the impact of symptoms and health care utilization of people diagnosed with fibromyalgia, people who fulfill the criteria but are not diagnosed, and people with chronic pain.Methods. We recruited people who had participated in a previous population survey across Scotland and who reported some typical fibromyalgia symptoms or had received a diagnosis of fibromyalgia. Responses to a postal questionnaire were used to define mutually exclusive groups: people who had a fibromyalgia diagnosis, who met criteria for fibromyalgia, and who had chronic pain.Results. Participants included 85 people with a diagnosis of fibromyalgia, 110 who met criteria for fibromyalgia, and 133 with chronic pain. The mean age across groups ranged 57-59 years, but the percentage female varied markedly: 86%, 64%, and 67%, respectively. Compared to those with chronic pain, participants with a fibromyalgia diagnosis were more likely to be out of employment due to health. An average of 3 years was needed to receive a fibromyalgia diagnosis, and more than half were diagnosed in secondary care (most commonly rheumatology). The fibromyalgia diagnosis and criteria groups were similar in terms of symptom impact, quality of life, and life satisfaction but were worse than the chronic pain group. Participants who had received a diagnosis of fibromyalgia reported the poorest health care experiences.Conclusion. An urgent need exists for a model of care for fibromyalgia to ensure prompt diagnosis, access to evidence-based care, and long-term support, with the aim of improving function. The data suggest that diagnosis in men may be overlooked, and this finding warrants further study.
Whilst social workers have skills and experiences that could be well suited to a research environment, moving from frontline social work to research can be daunting. Drawing from my own journey, I reflect on initial misconceptions and provide potential reflection points for others interested in undertaking research. I also suggest a selection of resources which may be relevant to social workers. By sharing my experiences, I offer an example of a journey from social worker to researcher. Future opportunities to expand this conversation are necessary and could be pursued by the Aotearoa New Zealand Association of Social Workers.
Background/Aims The Getting It Right First Time Report for Rheumatology recommends that care for patients with non-inflammatory painful MSK conditions such as fibromyalgia should be provided in primary and community care settings, and include reablement support. Employment that is safe, healthy, and gives individuals some control is good for physical and mental health and is of prime importance to patients with most MSK conditions. However, limited evidence exists about the impact of fibromyalgia on work ability and how to support this. We aimed to understand impacts of fibromyalgia on work ability in order to inform strategies for reablement. Methods Narrative qualitative interviews were undertaken with people with fibromyalgia across the UK. We explored views about care and treatment, and the impact fibromyalgia had on their wider lives, including work. Interviews were analysed thematically using an interpretive approach. Data management and initial analytic coding was supported by N*VIVO software. Results 31 people were interviewed; 26 female and 5 male. Participants were aged between 23 and 77 years (median 53 years). Time since diagnosis ranged from <1 year to > 20 years. Many people with fibromyalgia wanted to work and described its value. However, some described having to give up work or retire early because of their fibromyalgia. Those who remained in work reported often struggling mentally and physically with the demands of their job, mentioning: poor memory; brain fog; poor concentration; poor sleep and fatigue, along with side effects of pain medication. Committing to work was reportedly difficult due to the unpredictable nature of fibromyalgia causing concern about letting people down. Fibromyalgia was often described as an invisible illness, with colleagues and employers having little knowledge about fibromyalgia. Several people said that their employers were supportive; flexibility in how, when and where work tasks were done were highly valued e.g. flexible hours, additional rest breaks and home-working. Others felt they were perceived as a burden or ‘malingerer.’ Those without a formal diagnosis particularly struggled to access support. People often reported struggling to remain working for as long as possible before being unable to continue. Some actively made career choices that provided flexibility to remain at work e.g., changing career, becoming self-employed. Younger participants described disruption to school and university courses. Some reported completely re-thinking their intended career and described grief for the life and career to which they had aspired. There was a perceived lack of advice and support about working with fibromyalgia. Conclusion Work is an important part of rehabilitation and enablement for people with fibromyalgia. Services for fibromyalgia should facilitate early diagnosis and support for those who want to work, particularly for younger people as well as older adults who may find it harder to remain in the workplace. Disclosure R.J. Hollick: None. S. Doebl: None. Z. Skea: None. G. Macfarlane: None. L. Locock: None. K. Walker-Bone: None.
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