Abstract
Patient reported outcome measures (PROMs) assess outcomes of importance to patients. They include measures of a patients’ health or health care from the patient’s perspective. The benefits of measuring PROMs can include identifying unmet physical and psychological need, facilitating enhanced staff/patient communication and improving the quality of care. The aim of the Multidisciplinary Assessment at Dialysis Entry (MADE) study was to identify PROMs that impact upon the quality of the patient’s illness experience in the first 6 months of dialysis in order to develop a validated tool to be embedded within standard practice. We report results from the first 3 months of data. Longitudinal descriptive design. Participants commenced dialysis (hemodialysis or peritoneal dialysis) over a 6-month period (November 2017 to June 2018) in the Central & Northern Adelaide Renal & Transplantation Service (CNARTS) in South Australia. Study approved by the health service human research ethics committee with fully informed consent. Participants completed a 169 item questionnaire within 2 weeks of commencing dialysis and completed the same questionnaire at 12 weeks following commencement of dialysis. The instrument measured: illness and symptom perception (Palliative Care Outcome Scale-Renal (IPOS-Renal) Brief Illness Perception Questionnaire (B-IPQ), Illness Intrusiveness Ratings Scale (IIRS)); psychosocial health (Depression Anxiety and Stress Scales (DASS-21), Brief COPE Inventory, Emotional Thermometer (ET)); gastro-intestinal health (Gastrointestinal Symptom Rating Scale, Bristol Stool Chart, Food Frequency Questionnaire (FFQ)); sleep (Pittsburgh Sleep Quality Assessment (PSQI)), and health literacy (Brief Health Literacy Screening tool, Morisky Medication Adherence Scale (MMAS-8)). In addition, cognitive function (Montreal Cognitive Assessment (MoCA)) and physical function measures (Grip Strength, Timed Up and Go (TUG) were performed. A patient participant focus group was formed to provide study feedback. From a population frame of 64 incident dialysis patients 43 participants were enrolled (67% response rate), 28% female, mean age 62.1 years (SD 14.4) and 37% with diabetes. 33 out of 43 participants completed the survey at 12 weeks demonstrating non-significant trended improvement in items related to shortness of breath, energy, drowsiness, appetite, itching, mobility, cognition, anxiety, bowel health, social relations, physical function, health literacy and sleep quality. There was a non-significant decline in the participants’ perceptions of developing coping strategies as measured by the COPE Scale. Study participant focus group members were positive regarding patient participation in this ESKD PROMs study. The majority of PROMs over the first 3 months of dialysis revealed non-significant improvement. Current and further analysis will contribute to the development of a more concise tool to be embedded within standard practice.
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