High Royds Hospital was the third of four large hospitals built by the West
Riding of Yorkshire County Council to accommodate ‘pauper lunatics'. The
hospital was designed by the county engineer J. ...Vickers Edwards, work began
in 1884 and the hospital was opened in 1888. Pavilions were arranged in an
echelon formation with the administrative block, which included a tower and
clock, at the centre and the service area behind, the whole linked by
covered corridors. There were wards designated for the care of patients with
epilepsy and other special groups. Subsequently there were many additions to
the hospital which included an infirmary, long-stay wards detached from the
hospital and a ‘neurosis unit’ built in the modern style in 1938.
Aims
We explored the experiences and motivations of participants and staff who took part in the TRED‐HF trial (Therapy withdrawal in REcovered Dilated cardiomyopathy).
Methods and results
We ...conducted a qualitative study, using semi‐structured interviews, with participants (n = 12) and the research team (n = 4) from the TRED‐HF trial. Interviews were carried out in 2019 and were audio‐recorded and transcribed. Data were managed using NVivo and analysed using framework analysis. A patient representative provided guidance on the interpretation of findings and presentation of themes to ensure these remained meaningful, and an accurate representation, to those living with dilated cardiomyopathy. Three key themes emerged from the data: (i) perception of health; (ii) experiences and relationships with healthcare services and researchers; and (iii) perception of risk. Study participants held differing perceptions of their health; some did not consider themselves to have a heart condition or disagreed with the medical term ‘heart failure’. Relationships between participants, research staff, and clinical management teams influenced participants' experiences and decision making during the trial, including following clinical advice. There were differences in participants' perceptions of risk and their decisions to take heart failure medication after the trial was completed. Although the original TRED‐HF trial did not provide the results many had hoped for, a strong motivator for taking part was the opportunity to withdraw medication in a safely monitored environment which had been previously considered by some participants before. Investigators acknowledged that the insights gained from the study can now be used to support evidence‐based conversations with patients.
Conclusions
For people whose dilated cardiomyopathy is in remission, decisions to continue, reduce, or stop their medication are influenced by perceptions of personal health, perceive risk and the important of work, employment, recreation, relationships, and long‐term plans. The unique relationship between patient and cardiologist provides opportunities to promote honest discussion about adherence to medication and personalized long‐term management.
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FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SAZU, SBCE, SBMB, UL, UM, UPUK
Patient-reported outcomes (PROs) provide important insights into patients own perspectives about their health and medical condition, and there is evidence that their use can lead to improvements in ...the quality of care and to better-informed clinical decisions. Their application in cardiovascular populations has grown over the past decades. This statement describes what PROs are, and it provides an inventory of disease-specific and domain-specific PROs that have been developed for cardiovascular populations. International standards and quality indices have been published, which can guide the selection of PROs for clinical practice and in clinical trials and research; patients as well as experts in psychometrics should be involved in choosing which are most appropriate. Collaborations are needed to define criteria for using PROs to guide regulatory decisions, and the utility of PROs for comparing and monitoring the quality of care and for allocating resources should be evaluated. New sources for recording PROs include wearable digital health devices, medical registries, and electronic health record. Advice is given for the optimal use of PROs in shared clinical decision-making in cardiovascular medicine, and concerning future directions for their wider application.
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