Abstract
BackgroundAs a result of difficulties related to their illness, diagnosis and treatment, patients with end-stage renal disease experience significant emotional and psychological problems, which untreated can have considerable negative impact on their health and wellbeing. Despite evidence that patients desire improved support, management of their psychosocial problems, particularly at the lower-level, remains sub-optimal. There is limited understanding of the specific support that patients need and want, from whom, and when, and also a lack of data on what helps and hinders renal staff in identifying and responding to their patients’ support needs, and how barriers to doing so might be overcome. Through this research we therefore seek to determine what, when, and how, support for patients with lower-level emotional and psychological problems should be integrated into the end-stage renal disease pathway.Methods/DesignThe research will involve two linked, multicentre studies, designed to identify and consider the perspectives of patients at five different stages of the end-stage renal disease pathway (Study 1), and renal staff working with them (Study 2). A convergent, parallel mixed methods design will be employed for both studies, with quantitative and qualitative data collected separately. For each study, the data sets will be analysed separately and the results then compared or combined using interpretive analysis. A further stage of synthesis will employ data-driven thematic analysis to identify: triangulation and frequency of themes across pathway stages; patterns and plausible explanations of effects.DiscussionThere is an important need for this research given the high frequency of lower-level distress experienced by end-stage renal disease patients and lack of progress to date in integrating support for their lower-level psychosocial needs into the care pathway. Use of a mixed methods design across the two studies will generate a holistic patient and healthcare professional perspective that is more likely to identify viable solutions to enable implementation of timely and integrated care. Based on the research outputs, appropriate support interventions will be developed, implemented and evaluated in a linked follow-on study.Electronic supplementary materialThe online version of this article (doi:10.1186/s12882-016-0327-2) contains supplementary material, which is available to authorized users.
Highlights
As a result of difficulties related to their illness, diagnosis and treatment, patients with end-stage renal disease experience significant emotional and psychological problems, which untreated can have considerable negative impact on their health and wellbeing
Burden of end stage renal disease End-stage renal disease (ESRD) is when kidney function has deteriorated to such a poor level that without renal replacement therapy (RRT), dialysis or transplantation, death is probable within weeks or months
The data collected will be analysed using the same methodological approach as the Study 1 patient interviews. This is important and challenging research since the management of lower-level emotional and psychological difficulties experienced by patients with ESRD remains sub-optimal, despite patients’ desire for improved psychosocial support and an encouraging policy background
Summary
This is important and challenging research since the management of lower-level emotional and psychological difficulties experienced by patients with ESRD remains sub-optimal, despite patients’ desire for improved psychosocial support and an encouraging policy background. Based on the research outputs, appropriate interventions to support ESRD patients with lower-level emotional and psychological needs will be developed, implemented and evaluated in a linked follow-on study. (PDF 1007 kb) Additional file 2: Staff questionnaire. Abbreviations BDI, beck depression inventory; BDI-11, beck depression inventory – version 11; BDI-1A, beck depression inventory – version 1A; BSI, brief symptom inventory; CBT, cognitive behaviour therapy; CI, Chief Investigator; CKD, chronic kidney disease; CLAHRC WM, Collaborations for Leadership in Applied Health Research and Care West Midlands; DT, depression thermometer; ESRD, end-stage renal disease; ET, emotion thermometers; HADS, hospital anxiety and depression score; HCA, healthcare assistant; HD, haemodialysis; HHD, home haemodialysis; NA, negative affect; NCCN, National Comprehensive Cancer Network; NIHR, National Institute for Health Research; PA, positive affect; PANAS, positive and negative affect schedule; PD, peritoneal dialysis; PI, principal investigator; PPI, patient and public involvement; RCT, randomised controlled trial; RRT, renal replacement therapy
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