Using patient-reported outcome measures (PROMs) to promote quality of care and safety in the management of patients with advanced chronic kidney disease

[摘要] The research reported in this thesis explored the use of patient-reported outcome measures (PROMs) in the routine clinical management of patients with advanced chronic kidney disease (CKD). Mixed-methods were employed to (i) evaluate the evidence to support the use of PROMs in patients with advanced CKD, (ii) explore the opinions of patients and clinicians on the use of electronic PROMs (ePROMs) in routine renal practice, and (iii) develop and test the usability of a renal ePROM prototype with patients. A narrative review, a systematic review and analyses of the Renal Impairment In Secondary Care (RIISC) dataset were conducted to evaluate the evidence to support the use of PROMs in patient with advanced CKD. The narrative review found that the use of ePROMs may provide early warnings of deterioration in patients; reduce the need for patient follow-up visits by up to 50%; reduce hospitalization rates, and improve health-related quality of life (HRQOL) and survival. The systematic review found evidence to support the use of the KDQOL-36 PROM in pre-dialysis patients (although there is a need for further validation within the UK population); evidence was found to support the use of the KDQOL-36 and KDQOL-SF in patients on dialysis; and the ESRD-SCLTM was recommended for kidney transplant patients. Survival analyses using the RIISC dataset found that, along with other clinical and laboratory variables, patient reports of problems on the EQ-5D dimensions of self-care and usual activities significantly increased the risk for all-cause mortality. The likelihood of reporting problems with self-care and usual activities increased significantly with unemployment, retirement, co-morbidities. A qualitative study was conducted to explore the opinions of patients and clinicians on the use of ePROMs. The qualitative study found that patients may be willing to complete ePROMs on a regular basis and the selected questionnaires may be perceived as acceptable and relevant. Clinicians expressed a keen interest in PROMs and in PROMs research and acknowledged that PROMs have a potentially important role to play in the future care of patients with CKD. However, clinicians expressed concerns that the use of an ePROM system could raise patient expectations to unrealistic levels, medicalise ‘normal’ psychological/emotional responses to illness, and expose clinicians to the risk of litigation. The usability study demonstrated that patients with advanced CKD may find a Renal ePROM system easy to use and acceptable for reporting their symptoms remotely. In conclusion, the research reported in the thesis demonstrated the existence of substantial evidence to support the introduction of PROMs in routine renal practice. The thesis also highlighted the need for more real world evidence of the impact of using ePROMs on patient outcomes in order to facilitate adoption of ePROM systems by patients and clinicians.

[发布机构] University:University of Birmingham;Department:Institute of Applied Health Research

[关键词] R Medicine;R Medicine (General)