Patient and observer reported outcome measures to evaluate health-related quality of life in inherited metabolic diseases: a scoping review-Reference-Cited by-同舟云学术

Patient and observer reported outcome measures to evaluate health-related quality of life in inherited metabolic diseases: a scoping review

Published:2018-11-28 Issue:1 Volume:13 Page:
ISSN:1750-1172
Container-title:Orphanet Journal of Rare Diseases
language:en
Short-container-title:Orphanet J Rare Dis

Author:

Pascoal Carlota,Brasil Sandra,Francisco Rita,Marques-da-Silva Dorinda,Rafalko Agnes,Jaeken Jaak,Videira Paula A.,Barros Luísa,dos Reis Ferreira Vanessa

Funder

Fundação para a Ciência e a Tecnologia

CDG&Allies-PPAIN

Publisher

Springer Science and Business Media LLC

Subject

Pharmacology (medical),Genetics (clinical),General Medicine

Link

http://link.springer.com/content/pdf/10.1186/s13023-018-0953-9.pdf

Reference171 articles.

1. Bonner N, Abetz-Webb L, Renault L, Caballero T, Longhurst H, Maurer M, et al. Development and content validity testing of a patient-reported outcomes questionnaire for the assessment of hereditary angioedema in observational studies. Health Qual Life Outcomes. 2015;13:1–15.

2. Bogart KR, Irvin VL. Health-related quality of life among adults with diverse rare disorders. Orphanet J Rare Dis. 2017;12:177.

3. Healthy People 2020. Health-Related Quality of Life and Well-Being. 2010.

4. Robbins DA, Curro FA, Fox CH. Defining patient-centricity: opportunities, challenges, and implications for clinical care and research. Ther Innov Regul Sci. 2013;47:349–55.

5. FDA. Guidance for Industry Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims Clinical/Medical Guidance for Industry Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims. Health Qual Life Outcomes. 2006;4:79. https://doi.org/10.1186/1477-7525-4-79 .

Cited by 24 articles. 订阅此论文施引文献订阅此论文施引文献，注册后可以免费订阅5篇论文的施引文献，订阅后可以查看论文全部施引文献

1. Development of a signs and symptoms outcome measure for caregivers of patients with methylmalonic acidemia and propionic acidemia (MMAPAQ);Molecular Genetics and Metabolism;2024-09

2. The impact of a child’s inborn error of metabolism: the parents’ perspectives on restrictions, discrimination, family planning, and emergency management;Orphanet Journal of Rare Diseases;2024-08-26

3. Dietary Adherence in Children with Amino Acid Metabolism Disorders and its Impact on Caregivers’ Quality of Life;Jurnal Gizi dan Pangan;2024-03-30

4. Relationship between physical and psychological functioning and health‐related quality of life in congenital Aniridia;Acta Ophthalmologica;2023-12-22

5. Parents’ Perceptions Regarding Their Children’s Medications and Expert-Assessed Drug-Related Problems in Pediatric Patients with Inborn Errors of Metabolism;Children;2023-11-29