A concept mapping study evaluating the UK's first NHS generic fatigue clinic

Abstract

ImportanceFatigue is a significant and debilitating symptom affecting 25% of the population. It occurs in those with a range of chronic diseases, can be idiopathic and in 0.2–0.4% of the UK population occurs in combination with other symptoms that together constitute chronic fatigue syndrome (CFS). Until recently, NHS clinical services only focussed upon CFS and excluded the majority of fatigued patients who did not meet the CFS diagnostic criteria. The CRESTA Fatigue interdisciplinary clinic was established in 2013 in response to this unmet need.ObjectiveTo identify the service needs of the heterogeneous group of patients accessing the CRESTA Fatigue Clinic, to prioritize these needs, to determine whether each is being met and to plan targeted service enhancements.DesignUsing a group concept mapping approach, we objectively identified the shared understanding of service users accessing this novel clinic.Setting NHS Clinics for Research & Service in Themed Assessment (CRESTA) Fatigue Clinic, Newcastle Upon Tyne, UK.ParticipantsPatients (n = 30) and referrers (n = 10) to the CRESTA Fatigue Clinic contributed towards a statement generation exercise to identify ways the clinic could support service users to improve their quality of life. Patients (n = 46) participated in the sorting and rating task where resulting statements were sorted into groups similar in meaning and rated for ‘importance’ and ‘current success’.Main outcome and measureWe mapped the needs of patients attending the CRESTA Fatigue Clinic and identified which high‐priority needs were being successfully met and which were not.ResultsMultidimensional scaling and hierarchical cluster analysis depicted the following eight themed clusters from the data which related to various service‐user requirements: ‘clinic ethos’, ‘communication’, ‘support to self‐manage’, ‘peer support’, ‘allied health services’, ‘telemedicine’, ‘written information’ and ‘service operation’. Service improvement targets were identified within value bivariate plots of the statements.Conclusion and RelevanceService development concepts were grouped into thematic clusters and prioritized for both importance and current success. The resulting concept maps depict where the CRESTA Fatigue Clinic successfully addresses issues which matter to patients and highlights areas for service enhancement. Unmet needs of patients have been identified in a rigorous service evaluation, and these are currently being addressed in collaboration with a service‐user group.

A comprehensive service re-evaluation of the UK's first NHS generic fatigue clinic four years following its inception: a mixed methods study

“…The service was subsequently evaluated, to identify and prioritise service needs of its patients. This was carried out using a group concept mapping (GCM) approach and was found to successfully meet patients' expectations [7]. This initial study confirmed that people want their fatigue and their associated symptoms to be taken seriously by clinicians and ultimately, to be 'believed'.…”

“…To ensure we continue to meet the needs of clinic patients and in light of the recently implemented changes, we believed it was important to re-evaluate the service using the same factors identified by patients and referrers as part of the original study [7]. These factors, or ideas, were identified through a brainstorming exercise involving clinic patients and clinician referrers.…”

“…The rating questionnaire A 'success rating' questionnaire was compiled from a list of statements which were generated from stakeholders in the original clinic evaluation concept mapping study [7]. The list of statements can be seen in Table 1.…”

Cognitive behavioural therapy for the management of inflammatory bowel disease-fatigue with a nested qualitative element: study protocol for a randomised controlled trial

“…Balancing the insights from research and practice can maximise the likelihood of interventions being feasible and acceptable, and of treatment addressing important issues to patients while overcoming previously identified limitations [76]. …”

Yonder: Fatigue, role models, MDT meetings, and GP signatures

“…A study analysing this new service, described as the UK's first NHS generic fatigue clinic, found it successfully met the majority of important needs and was popular with both users and referrers. 1 Patients using the service were generally much older than those found in specialist CFS clinics and had a high burden of chronic disease, suggesting the demand for this type of clinic may well increase in future decades as population demographics change.…”