Perspectives from Canadian Patients and Families on the Illness Experience of Inherited Retinal Diseases: A Mixed Methods Study

Thème:
Rétine
Quoi:
Paper Presentation | Présentation d'article
Quand:
4:37 PM, samedi 11 juin 2022 (7 minutes)
Comment:

Authors: Imaan Z. Kherani1, Chad Andrews2, Jennifer Pereira3, Larissa Moniz4, Cynthia X. Qian5. 1Temerty Faculty of Medicine, University of Toronto, 2College of Optometrists of Ontario, 3JRL Research & Consulting Inc., 4Fighting Blindness Canada, 5Department of Ophthalmology, Universite de Montreal.
Author Disclosure Block: I.Z. Kherani: None. C. Andrews: Any direct financial payments including receipt of honoraria; Name of for-profit or not-for-profit organization(s); Fighting Blindness Canada, College of Optometrists of Ontario. Any direct financial payments including receipt of honoraria; Description of relationship(s); Research Consultant, Researcher and Policy Analyst. J. Pereira: Any direct financial payments including receipt of honoraria; Name of for-profit or not-for-profit organization(s); Fighting Blindness Canada. Any direct financial payments including receipt of honoraria; Description of relationship(s); Research Consultant. L. Moniz: Any direct financial payments including receipt of honoraria; Name of for-profit or not-for-profit organization(s); Fighting Blindness Canada. Any direct financial payments including receipt of honoraria; Description of relationship(s); Employee (Director, Research and Mission Programs). C.X. Qian: Membership on advisory boards or speakers’ bureaus; Name of for-profit or not-for-profit organization(s); Allergan, Bayer, Boehringer Ingelheim, Novartis, Roche. Membership on advisory boards or speakers’ bureaus; Description of relationship(s); Board Member for All.

Purpose: Inherited retinal diseases (IRDs) are a set of rare genetic conditions leading to progressive vision loss. There is a paucity of literature on the Canadian IRD illness experience, which is imperative for Canadian-based policy change and institutional investment in accessible health services, and patient-centered clinical care. This study aims to understand the physical, psychosocial, and practical challenges faced by those with lived experience. This will contribute greatly towards the identification of areas of reform from a medical, health policy, and social care perspective.

Study Design: Sequential mixed methods study. 

Methods: This study comprised an online survey of Canadians living with or caring for someone with an IRD. Survey data fields included demographics, self-reported vision, genetic testing, information preferences, healthcare management and experiences, treatment goals, and disease impact on daily life. Recruitment occurred through Fighting Blindness Canada’s patient database, filtering by disease-type. Survey dissemination also occurred via social media and not-for-profit stakeholder organizations to their constituents. 20 respondents were subsequently contacted for in-depth telephone interviews to further explore their condition.

Results: Between March and June 2020, 408 individuals (mean age = 51.4 years ± 16.7; male = 45.7%) participated in our survey. Respondents identified having one of over 14 IRDs, with 72% specifying retinitis pigmentosa. 68% reported being legally blind. Having an IRD had significant impacts on daily functioning, with 53% of participants indicating affected employment or education and 43% specifying a severe or very severe impact on mobility. Psychological burdens were evident: >70% worried about coping with daily life and 68% indicated frequent feelings of depression and hopelessness. Interviewees described their most significant disease impacts being loss of independence and challenges with social interaction. Despite this, the majority of respondents had not accessed support services, including counseling, mobility training or career support, due to a lack of awareness and/or access. 

Conclusions: Our study describes the Canadian IRD community, including its support network and the impact of vision loss on daily activities and wellbeing. This data highlights the pronounced psychosocial burden that IRDs have on Canadian patients and families while elucidating unmet needs for treatments, awareness, and support. Vision rehabilitation with a psychosocial approach is necessary, alongside improving funding and access to emerging treatments.

Conférencier.ère
Temerty Faculty of Medicine, University of Toronto
MD Candidate, Class of 2023
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