Objective: To understand the physical, psychosocial, and practical challenges faced by Canadian patients with inherited retinal diseases (IRDs) and their families.
Design: Mixed methods.
Participants: A total of 408 Canadians living with or caring for someone with an IRD (mean age = 51.4 ± 16.7 years) completed an online survey. Twenty cohort respondents participated in additional telephone interviews.
Methods: The online survey was comprised of questions concerning demographics, self-reported vision, genetic testing, information preferences, health care experiences, treatment goals, and disease impact on daily life. Recruitment occurred through Fighting Blindness Canada's community database. Survey dissemination also occurred via social media and not-for-profit stakeholder outreach. Subsequent to survey completion, a subset of respondents participated in semistructured telephone interviews to further elucidate illness experience.
Results: Respondents identified having 1 of more than 14 IRDs, with 72% specifying retinitis pigmentosa. Sixty-eight percent reported being legally blind, and more than 85% self-reported moderate to low vision or worse. IRDs impacted daily functioning, with 53% of respondents indicating that they affected employment or education. Psychological challenges were evident, with more than 70% worried about coping with daily life and more than 60% indicating fear and stress. Qualitative data described hopelessness around suitable work, loss of independence, and challenges with social interaction. Sixty-five percent reported a negative impact on family life. Many had not accessed social support services because of a lack of perceived need, awareness, or availability.
Conclusion: Canadian patients with IRDs report moderate to severe visual impairment, and both patients and their families describe an impact on psychosocial well-being and functioning during daily activities. Vision rehabilitation with a psychosocial approach is necessary, alongside facilitating access to emerging treatments.
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http://dx.doi.org/10.1016/j.jcjo.2022.06.021 | DOI Listing |
Commun Biol
December 2024
Institut national de la recherche scientifique (INRS)-Centre Armand-Frappier Santé Biotechnologie, 531 boulevard des Prairies, H7V 1M7, Laval, QC, Canada.
We have shown that virus-specific CD4 and CD8 memory T cells (TM) induce autophagy after T cell receptor (TCR) engagement to provide free glutamine and fatty acids, including in people living with HIV-1 (PLWH). These nutrients fuel mitochondrial ATP generation through glutaminolysis and fatty acid oxidation (FAO) pathways, to fulfill the bioenergetic demands for optimal IL-21 and cytotoxic molecule production in CD4 and CD8 cells, respectively. Here, we expand our knowledge on how the metabolic events that occur in the mitochondria of virus-specific TM down-stream of the autophagy are regulated.
View Article and Find Full Text PDFClin Neuroradiol
December 2024
Department of Clinical Neurosciences, Cumming School of Medicine, University of Calgary and Foothills Medical Centre, Calgary, AB, Canada.
Background & Purpose: Non-stenotic (< 50%) carotid plaques are increasingly recognized as a potential mechanism for ischemic stroke. We assessed the prevalence of such plaques in patients with low-risk neurologic events and evidence of DWI (Diffusion Weighted Imaging)-positive ischemia.
Methods: This is a post-hoc exploratory analysis from the DOUBT study, a prospective, observational, multicenter study of patients with low-risk transient or persistent minor focal neurological symptoms.
Clin Transplant
December 2024
Section of Nephrology, Department of Medicine, University of Manitoba, Winnipeg, Canada.
Background: Current donor risk assessments to identify risk of infectious transmission through transplantation have been criticized as unnecessarily discriminatory for sexual and gender minorities. Little is known about how increased infectious risk donor (IIRD) patients transition through the deceased donation system. We sought to evaluate how IIRD status and other equity-relevant identities impacted the likelihood of a caregiver of a deceased donor being approached for organ donation and the likelihood of caregiver consent.
View Article and Find Full Text PDFBMC Pregnancy Childbirth
December 2024
Department of Health and Society, University of Toronto Scarborough, 1265 Military Trail, Toronto, ON, M1C 1A4, Canada.
Background: People with disabilities experience perinatal health disparities. This qualitative study examines disabled people's experiences of labour and delivery care from a disability justice lens.
Methods: Semi-structured interviews were conducted between July 2019 and February 2020 with 31 women and transgender people aged 18-45 years with physical, sensory, and/or intellectual/developmental disabilities, who were living in in Ontario, Canada and had given birth in the previous five years.
Eur Radiol
December 2024
Department of Diagnostic Radiology, Queen Elizabeth II Health Sciences Centre and Dalhousie University, Halifax, Canada.
Objectives: To assess the natural history of incidental pancreatic cystic lesions (PCLs) and the sensitivity of surveillance guidelines to detect malignancy.
Materials And Methods: We performed a single-center retrospective analysis of incidental PCLs discovered between 2012 and 2017. Patients were identified by searching radiology reports for relevant keywords, then search results were manually reviewed to exclude patients with < 5 years of follow-up, non-incidental PCLs, known pancreatic cancer, or pancreatitis.
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