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'You Can't Muck Around With Transplant': Young People's Experiences of Clinical Care Following Lung Transplant.
Health Expect
February 2025
Health and Social Care Unit, School of Public Health and Preventive Medicine, Faculty of Medicine, Nursing, and Health Sciences, Monash University, Melbourne, Australia.
Background: Lung transplantation improves survival and quality of life in young people with end-stage lung disease. Few studies have investigated the clinical care experiences of young people after lung transplantation.
Design: This qualitative study aimed to explore the experiences of young people who underwent lung transplantation.
Validation of the FROM-16 in family members of patients receiving advanced therapy medicinal product (ATMP).
Qual Life Res
January 2025
Value-based Health & Care Academy, School of Management, Swansea University, Swansea, SA1 8EN, UK.
Purpose: Outcome-based pricing models which consider domains of value not previously considered in healthcare, such as societal outcomes, are of increasing interest for healthcare systems. Societal outcomes can include family-reported outcome measures (FROMs), which measure the impact of disease upon the patient's family members. The FROM-16 is a generic and easy-to-use family quality of life tool, but it has never been used in the context of patients undergoing advanced therapy medicinal product (ATMP) treatment.
View Article and Find Full Text PDFEstimating health state utilities for aromatic L-amino acid decarboxylase deficiency (AADCd) in the United States.
Health Qual Life Outcomes
January 2025
PTC Therapeutics Inc, 500 Warren Corporate Center Drive, Warren, N.J, 07059, USA.
Background: AADCd is a rare neurometabolic disorder presenting in infancy. Children with AADCd have motor dysfunction and development delays that result in the need for lifelong care; quality of life is greatly impacted. Current characterizations of health-related quality of life and associated health state utilities (HSUs) may be underestimated in AADCd.
View Article and Find Full Text PDFFeasibility and effects of cognitive training on cognition and psychosocial function in Huntington's disease: a randomised pilot trial.
J Neurol
January 2025
Turner Institute for Brain and Mental Health, School of Psychological Sciences, Faculty of Medicine, Nursing and Health Sciences, Monash University, 18 Innovation Walk, Clayton, Victoria, 3800, Australia.
Background: Huntington's disease (HD) is a rare neurodegenerative disease that causes progressive cognitive, physical, and psychiatric symptoms. Computerised cognitive training (CCT) is a novel intervention that aims to improve and maintain cognitive functions through repeated practice. The effects of CCT have yet to be established in HD.
View Article and Find Full Text PDFImplementation of a sexual health clinic in an oncology setting: patient and provider perspectives.
BMC Health Serv Res
January 2025
Division of Urology, Department of Surgery, University Health Network, University of Toronto, Toronto, ON, M5T 2SB, Canada.
Background: Sexual dysfunction is prevalent among cancer survivors, significantly impacting patient and partner quality of life. Despite this, sexual health clinics (SHCs) remain rare in cancer centres across Canada. An innovative clinic was developed at Princess Margaret Cancer Centre in Toronto, Canada to address this significant gap in survivorship care.
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