GUERRAROUI Abdallah

Dissertation title: Person-centered care: Patient-reported measures (PROMs PREMs) for a person-centered care approach for dialysis patients

Person-centered care: Patient-reported measures (PROMs PREMs) for a person-centered health approach for dialysis patients

Year of registration: 2023

Co-supervisors: Pr Julie HAESEBAERT- Pr Cyrille COLIN- Pr Fitsum GUEBRE-EGZIBHER

Thesis summary: 

Chronic kidney disease (CKD) patients treated with hemodialysis require long-term care. They suffer from numerous physical and mental symptoms associated with kidney disease (fatigue, difficulty falling asleep, pain, itching, depression, irritability...). The presence of symptoms is a burden for these patients, with a negative impact on their quality of life and on mortality. In addition to evaluating health-related quality of life, PROMs (Patient-Reported Outcome Measures) enable self-assessment of patients' physical, emotional and social signs and/or symptoms. Oncology research suggests that PROMs can offer a standardized approach to measuring the quality of life and the burden of symptoms, enabling clinicians to better understand patient health status, improve their overall management, and foster shared decision-making. Recent studies in hemodialysis have proved the impact of PROMs on morbidity and mortality. These have shown an increase in morbidity and mortality for a recovery time from post-dialysis fatigue greater than 12 hours, and a gain in survival and avoided hospitalizations for a recovery time of less than 2 hours.

The problematic: Although the importance of PROMs is recognized and their use in routine care is strongly supported, the literature corroborates that it is difficult to integrate PROMs into routine care, particularly for hemodialysis patients, whose symptoms can be very varied. The multiplication of questionnaires, often generic and not personalized to the patient's state of health, and the absence of feedback to the patient, make it difficult for them to be accepted (by both patients and professionals) and to be relevant. This results in a low response rate, organizational problems and low professional involvement in the effective exploitation of the results as well as their utility.

Objectives: The project consists in studying the contribution of patient-reported measures (PROMs-PREMs) with a person-centered care approach for patients with dialyzed chronic kidney disease (CKD), and the integration of PROMs into routine care for dialysis patients.

Research considered for the Doctoral Thesis:

Improving the health of the population and increasing the quality of care and services delivered by the healthcare system, the objectives of the thesis work will be:

1. Provide knowledge to evaluate the concordances of symptoms experienced by patients and those detected by caregivers. Prospective multicenter study.

2. Personalization of PROMs submitted to patients with the objective of increasing their acceptance and integration into routine care.

3. Evaluate the views/expectations of patients and caregivers for patient experience measures (PREMs). Single-center prospective study (Calydial). Mixed research (quantitative and qualitative)