Abstract: TH-PO589
Humanization and Telehealth for Improving Patient-Reported Outcomes in Glomerular Diseases: The Human-C Project
Session Information
- Glomerular Diseases: Clinical and Epidemiologic Studies
November 02, 2023 | Location: Exhibit Hall, Pennsylvania Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Glomerular Diseases
- 1402 Glomerular Diseases: Clinical, Outcomes, and Trials
Authors
- Uriol Rivera, Miguel, Hospital Universitario Son Espases, Palma, Illes Balears, Spain
- Serén, Elena, Hospital Universitario Son Espases, Palma, Illes Balears, Spain
Background
Glomerular diseases (GD) encompass rare diseases that predominantly affect young and working-age individuals, often requiring off-label therapies. These conditions necessitate personalized and ongoing monitoring, which can impact patients' quality of life (QoL). The implementation of telehealth should be tailored to individual patient profiles, while nurse coaching support can identify patients' personal and occupational needs, and reinforce effective communication. This study reports the outcomes of implementing telehealth and nurse coaching support (Humanization Coaching Project: Human-C Project) in a glomerular disease unit.
Methods
Objective: Evaluate the effect of the Human-C Project on patient-reported outcomes (PROMs) and patient-reported experience measures (PREMs) in GD patients, including during the COVID-19 pandemic.
Telehealth via WhatsApp and nurse coaching support were introduced in November 2019, incorporating virtual visits. A nurse conducted interviews using Promis-29 and SF-36 questionnaires. In February 2023, an online survey with 15 items (including questions from Promis-29, SF-36, and nurse coaching) was administered to 233 patients.
Results
In 2019, 2,432 visits were recorded, reducing by 7% in 2020 (2,251 visits), with 37% being virtual. Eighty-nine patients responded to the questionnaire. The questionnaire covered domains such as employment status, disease knowledge, social function, psychological health, medical appointments, and therapy preferences. Key findings included: working-age patients (87%), inadequate disease knowledge (16%), fatigue (53%), sleep issues (50%), dissatisfaction with work performance (40%), and reduced activity due to emotional problems (34%). Following the Human-C Project, 85% reported adequate healthcare team access during the pandemic, and 72% reported improved QoL.
Conclusion
Glomerular disease patients face QoL challenges, but the Human-C Project, along with telehealth, provides specific care perspectives and improves QoL. These findings have important implications for healthcare systems, even in crises like the COVID-19 pandemic.