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
Quality of Life Research – Springer Journals
Published: Mar 30, 2017
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