The patient’s experience of primary ciliary dyskinesia: a systematic review

The patient’s experience of primary ciliary dyskinesia: a systematic review Qual Life Res (2017) 26:2265–2285 DOI 10.1007/s11136-017-1564-y REVIEW The patient’s experience of primary ciliary dyskinesia: a systematic review 1,2 1 1,3 2 Laura Behan  · Bruna Rubbo  · Jane S. Lucas  · Audrey Dunn Galvin   Accepted: 24 March 2017 / Published online: 30 March 2017 © The Author(s) 2017. This article is an open access publication Abstract depleted compared to family or peers. In terms of social Background Primary ciliary dyskinesia (PCD) is a rare impact, symptoms lead to embarrassment and a sense of genetic disorder characterised by progressive sinopulmo- isolation, with patients concealing symptoms and/or their nary disease, with symptoms starting soon after birth. The diagnosis. In turn, isolation was also linked with the lack aim of this study is to critically review, analyse, and syn- of public and medical knowledge. In relation to emotional thesise the literature in order to understand the experiences impact, anxiety was reported in a number of qualitative of patients with primary ciliary dyskinesia (PCD) and the studies; patients were anxious about getting sick or when impact on health-related quality of life. thinking about their future health. The burden of treatment Method MEDLINE, EBSCO, Cumulative Index to Nurs- and factors influencing adherence were also discussed in ing and Allied Health http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Quality of Life Research Springer Journals

The patient’s experience of primary ciliary dyskinesia: a systematic review

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Publisher
Springer International Publishing
Copyright
Copyright © 2017 by The Author(s)
Subject
Medicine & Public Health; Quality of Life Research; Sociology, general; Public Health; Quality of Life Research
ISSN
0962-9343
eISSN
1573-2649
D.O.I.
10.1007/s11136-017-1564-y
Publisher site
See Article on Publisher Site

Abstract

Qual Life Res (2017) 26:2265–2285 DOI 10.1007/s11136-017-1564-y REVIEW The patient’s experience of primary ciliary dyskinesia: a systematic review 1,2 1 1,3 2 Laura Behan  · Bruna Rubbo  · Jane S. Lucas  · Audrey Dunn Galvin   Accepted: 24 March 2017 / Published online: 30 March 2017 © The Author(s) 2017. This article is an open access publication Abstract depleted compared to family or peers. In terms of social Background Primary ciliary dyskinesia (PCD) is a rare impact, symptoms lead to embarrassment and a sense of genetic disorder characterised by progressive sinopulmo- isolation, with patients concealing symptoms and/or their nary disease, with symptoms starting soon after birth. The diagnosis. In turn, isolation was also linked with the lack aim of this study is to critically review, analyse, and syn- of public and medical knowledge. In relation to emotional thesise the literature in order to understand the experiences impact, anxiety was reported in a number of qualitative of patients with primary ciliary dyskinesia (PCD) and the studies; patients were anxious about getting sick or when impact on health-related quality of life. thinking about their future health. The burden of treatment Method MEDLINE, EBSCO, Cumulative Index to Nurs- and factors influencing adherence were also discussed in ing and Allied Health

Journal

Quality of Life ResearchSpringer Journals

Published: Mar 30, 2017

References

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