Healthcare access, satisfaction, and health-related quality of life among children and adults with rare diseases

被引：0
|
作者：
Kathleen Bogart
Amanda Hemmesch
Erica Barnes
Thomas Blissenbach
Arthur Beisang
Patti Engel
机构：
[1] Oregon State University,School of Psychological Science
[2] St. Cloud State University,Department of Psychology
[3] Chloe Barnes Advisory Council on Rare Diseases,Medical School
[4] University of Minnesota,undefined
[5] Gillette Children’s Specialty Healthcare,undefined
[6] Engage Health Inc.,undefined
[7] University of Minnesota,undefined
[8] 4ES Corporation,undefined
[9] Minnesota House of Representatives,undefined
[10] Minnesota State Senate,undefined
[11] Mayo Clinic,undefined
[12] Minnesota State Senate,undefined
[13] Fairview Southdale Hospital and Fairview Ridges Hospital,undefined
[14] Sickle Cell Foundation of Minnesota,undefined
[15] Children’s Minnesota,undefined
[16] Fairview,undefined
[17] CentraCare,undefined
[18] Rebiotix Inc.,undefined
[19] PreferredOne®,undefined
[20] Be the Match,undefined
来源：
Orphanet Journal of Rare Diseases | / 17卷
关键词：
Rare disease; Stigma; Depression; Anxiety; Patient satisfaction; Health-related quality of life;
D O I：
暂无
中图分类号：
学科分类号：
摘要：
引用
下载
收藏
相关论文
共 50 条
  • [11] Health-related quality of life for children with rare diagnoses, their parents' satisfaction with life and the association between the two
    Johansen, Heidi
    Dammann, Brede
    Andresen, Inger-Lise
    Fagerland, Morten Wang
    HEALTH AND QUALITY OF LIFE OUTCOMES, 2013, 11
  • [12] Predictors of health-related quality of life among healthcare professionals
    Iqbal, Muhammad Shahid
    MEDICAL SCIENCE, 2020, 24 (106) : 4445 - 4452
  • [13] Health-Related Quality of Life Among Healthcare Providers in Pakistan
    Iqbal, Muhammad Shahid
    JOURNAL OF PHARMACY AND BIOALLIED SCIENCES, 2021, 13 (01): : 31 - 38
  • [14] Health-Related Quality of Life among University Healthcare Academics
    Iqbal, Muhammad Shahid
    Al-Saikhan, Fahad, I
    Iqbal, Muhammad Zahid
    JOURNAL OF PHARMACEUTICAL RESEARCH INTERNATIONAL, 2020, 32 (05) : 49 - 59
  • [15] IMPACT OF HEALTHCARE ACCESS ON HEALTH-RELATED QUALITY OF LIFE IN THE TUNISIAN POPULATION
    Aziz, B.
    Drira, C.
    Felfel, H.
    Kooli, A.
    Khrouf, Razgallah M.
    VALUE IN HEALTH, 2020, 23 : S684 - S684
  • [16] The Effects of Pain on Health-Related Quality of Life and Satisfaction With Life in Older Adults
    Simsek, Ibrahim Engin
    Simsek, Tulay Tarsuslu
    Yumin, Eylem Tutun
    Sertel, Meral
    Ozturk, Asuman
    Yumin, Murat
    TOPICS IN GERIATRIC REHABILITATION, 2010, 26 (04) : 361 - 367
  • [17] Oral Health-Related Quality of Life in Rare Diseases with Oral Manifestations
    Hanisch, Marcel
    Jung, Susanne
    Kleinheinz, Johannes
    GESUNDHEITSWESEN, 2019, 81 (11) : 902 - 906
  • [18] Arthritis and health-related quality of life among adults in Ohio
    Kim, S. H.
    VALUE IN HEALTH, 2007, 10 (03) : A122 - A123
  • [19] The Satisfaction of Latina Breast Cancer Survivors with Their Healthcare and Health-Related Quality of Life
    Wildes, Kimberly A.
    Miller, Alexander R.
    de Majors, Sandra San Miguel
    Otto, Pamela M.
    Ramirez, Amelie G.
    JOURNAL OF WOMENS HEALTH, 2011, 20 (07) : 1065 - 1074
  • [20] Health-related quality of life among older adults with arthritis
    Dominick K.L.
    Ahern F.M.
    Gold C.H.
    Heller D.A.
    Health and Quality of Life Outcomes, 2 (1)
12345