Intervening to eliminate the centre-effect variation in home dialysis use: protocol for Inter-CEPt-a sequential mixed-methods study designing an intervention bundle.

INTRODUCTION: Use of home dialysis by centres in the UK varies considerably and is decreasing despite attempts to encourage greater use. Knowing what drives this unwarranted variation requires in-depth understanding of centre cultural and organisational factors and how these relate to quantifiable centre performance, accounting for competing treatment options. This knowledge will be used to identify components of a practical and feasible intervention bundle ensuring this is realistic and cost-effective. METHODS AND ANALYSIS: Underpinned by the non-adoption, abandonment, scale-up, spread and sustainability framework, our research will use an exploratory sequential mixed-methods approach. Insights from multisited focused team ethnographic and qualitative research at four case study sites will inform development of a national survey of 52 centres. Survey results, linked to patient-level data from the UK Renal Registry, will populate a causal graph describing patient and centre-level factors, leading to uptake of home dialysis and multistate models incorporating patient-level treatment modality history and mortality. This will inform a contemporary economic evaluation of modality cost-effectiveness that will quantify how modification of factors facilitating home dialysis, identified from the ethnography and survey, might yield the greatest improvements in costs, quality of life and numbers on home therapies. Selected from these factors, using the capability, opportunity and motivation for behaviour change framework (COM-B) for intervention design, the optimal intervention bundle will be developed through workshops with patients and healthcare professionals to ensure acceptability and feasibility. Patient and public engagement and involvement is embedded throughout the project. ETHICS AND DISSEMINATION: Ethics approval has been granted by the Health Research Authority reference 20-WA-0249. The intervention bundle will comprise components for all stake holder groups: commissioners, provider units, recipients of dialysis, their caregivers and families. To reache all these groups, a variety of knowledge exchange methods will be used: short guides, infographics, case studies, National Institute for Health and Care Excellence guidelines, patient conferences, 'Getting it Right First Time' initiative, Clinical Reference Group (dialysis).

The availability of health information to patients with newly diagnosed polymyalgia rheumatica: results from the Polymyalgia Rheumatica (PMR) Cohort study.

AimThe aim of this study was to assess the provision of information to, and seeking of information by, patients newly diagnosed with polymyalgia rheumatica (PMR) in primary care. BACKGROUND: PMR is an inflammatory rheumatological condition of older people that can be treated with long-term oral glucocorticoids. Management usually requires the patient to understand the potential complications of treatment and the disease, as well as involvement in reducing treatment dose. This may be complex for patients to understand. METHOD: Data are taken from the baseline phase of the PMR Cohort study, which recruited newly diagnosed patients with PMR from UK primary care. Participants provided information on their PMR symptoms, general health and sociodemographics. They also completed items regarding information provision by their doctor at diagnosis, its usefulness and their own search for information.FindingsA total of 652 people responded to the baseline survey. In all, 399 (62.7%) had received written information from their doctor; 237 (98%) found it useful; 265 (42.9%) would have liked more information; and 311 (48.4%) sought out more information. Those who were not given information and did not seek it out tended to be older and have poorer internet access.Information provided at diagnosis to patients with PMR is useful, but more than a third did not receive any. This is concerning when PMR requires self-management and vigilance for red flags. Doctors should make use of the resources already available to them to support patients and should specifically ensure that these are available to more elderly patients and those without internet access.

Patients' views on the causes of their polymyalgia rheumatica: a content analysis of data from the PMR Cohort Study.

OBJECTIVE: To explore primary care polymyalgia rheumatica (PMR) patient beliefs about the causes of their PMR. DESIGN: Qualitative content analysis was conducted on patients' written responses to the question of what they thought had caused their PMR. All data were coded and emergent categories of causal beliefs identified. SETTING: Community patients receiving primary care at general practitioner (GP) practices across England. PARTICIPANTS: Participants were recruited from a primary care PMR inception cohort (n=654). Between June 2012 and June 2014 GPs referred 739 people with a new PMR diagnosis in the past 3 years into the study. Patients were mailed a baseline self-completion questionnaire, which included the question, 'What do you think caused your PMR?'. Responses to this question form the data set for the present study. RESULTS: 296 (45%) patients gave a possible cause for their PMR, while 276 (42%) respondents wrote 'no idea'. Common attributions include ageing (45, 18%), medication (18, 5%) and personal stress (53, 14%). 24 respondents (6%) thought their PMR was as a result of another medical condition. CONCLUSIONS: This is the first study to examine causation beliefs in PMR, identifying a number of possible causes such as ageing, stress and as a complication of other medical problems. Understanding these patient beliefs may impact on treatment adherence and patient outcome.