Survey of healthcare experiences of Australian adults living with rare diseases

被引：0
|
作者：
Caron Molster
Debra Urwin
Louisa Di Pietro
Megan Fookes
Dianne Petrie
Sharon van der Laan
Hugh Dawkins
机构：
[1] Office of Population Health Genomics,
[2] Department of Health,undefined
[3] Genetic Support Network Victoria,undefined
[4] Rare Voices Australia,undefined
[5] Genetic Alliance Australia,undefined
[6] Genetic and Rare Diseases Network,undefined
[7] Centre for Population Health Research,undefined
[8] Curtin University of Technology,undefined
[9] School of Pathology and Laboratory Medicine,undefined
[10] University of Western Australia,undefined
[11] Centre for Comparative Genomics,undefined
[12] Murdoch University,undefined
来源：
Orphanet Journal of Rare Diseases | / 11卷
关键词：
Healthcare; Survey; Australia; Experiences; Diagnosis; Health services; Rare diseases;
D O I：
暂无
中图分类号：
学科分类号：
摘要：
引用
收藏
相关论文
共 50 条
  • [1] Survey of healthcare experiences of Australian adults living with rare diseases
    Molster, Caron
    Urwin, Debra
    Di Pietro, Louisa
    Fookes, Megan
    Petrie, Dianne
    van der Laan, Sharon
    Dawkins, Hugh
    ORPHANET JOURNAL OF RARE DISEASES, 2016, 11
  • [2] Australian children living with rare diseases: experiences of diagnosis and perceived consequences of diagnostic delays
    Zurynski, Yvonne
    Deverell, Marie
    Dalkeith, Troy
    Johnson, Sandra
    Christodoulou, John
    Leonard, Helen
    Elliott, Elizabeth J.
    ORPHANET JOURNAL OF RARE DISEASES, 2017, 12
  • [3] Australian children living with rare diseases: experiences of diagnosis and perceived consequences of diagnostic delays
    Yvonne Zurynski
    Marie Deverell
    Troy Dalkeith
    Sandra Johnson
    John Christodoulou
    Helen Leonard
    Elizabeth J Elliott
    Orphanet Journal of Rare Diseases, 12
  • [4] Integrated care for healthcare sustainability for patients living with rare diseases
    Castro, Raquel
    De Santis, Marta
    ANNALI DELL ISTITUTO SUPERIORE DI SANITA, 2019, 55 (03): : 276 - 282
  • [5] Healthcare Experiences and Needs of Older Adults Living With HIV: A Qualitative Study
    Lund, Marie
    Sundler, Annelie J.
    Lalloo, Ewa Carlsson
    JOURNAL OF CLINICAL NURSING, 2024, 33 (12) : 4819 - 4829
  • [6] Alone in a Crowd? Parents of Children with Rare Diseases' Experiences of Navigating the Healthcare System
    Baumbusch, Jennifer
    Mayer, Samara
    Sloan-Yip, Isabel
    JOURNAL OF GENETIC COUNSELING, 2019, 28 (01) : 80 - 90
  • [7] Out-of-pocket healthcare expenditures of Turkish households living with rare diseases
    Kockaya, Guvenc
    Oguzhan, Gulpembe
    Okcun, Selin
    Kurnaz, Mustafa
    FRONTIERS IN PUBLIC HEALTH, 2023, 11
  • [8] Consequences of a pandemic for people living with rare diseases and recommendations for maintaining healthcare and participation
    Zybarth, David
    Brandt, Maja
    Mundlos, Christine
    Inhestern, Laura
    BUNDESGESUNDHEITSBLATT-GESUNDHEITSFORSCHUNG-GESUNDHEITSSCHUTZ, 2024, 67 (01) : 57 - 65
  • [9] Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals
    Holly Walton
    Pei Li Ng
    Amy Simpson
    Lara Bloom
    Lyn S. Chitty
    Naomi J. Fulop
    Amy Hunter
    Jennifer Jones
    Joe Kai
    Larissa Kerecuk
    Maria Kokocinska
    Kerry Leeson-Beevers
    Sharon Parkes
    Angus I. G. Ramsay
    Alastair Sutcliffe
    Christine Taylor
    Stephen Morris
    Orphanet Journal of Rare Diseases, 18
  • [10] Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals
    Walton, Holly
    Ng, Pei Li
    Simpson, Amy
    Bloom, Lara
    Chitty, Lyn S.
    Fulop, Naomi J.
    Hunter, Amy
    Jones, Jennifer
    Kai, Joe
    Kerecuk, Larissa
    Kokocinska, Maria
    Leeson-Beevers, Kerry
    Parkes, Sharon
    Ramsay, Angus I. G.
    Sutcliffe, Alastair
    Taylor, Christine
    Morris, Stephen
    ORPHANET JOURNAL OF RARE DISEASES, 2023, 18 (01)
12345