LATE-BREAKING ABSTRACT: Validation of a new health-related quality of life instrument specific to adults with primary ciliary dyskinesia: QOL-PCD

2016 ◽  
Author(s):  
Laura Behan ◽  
Margaret W. Leigh ◽  
Sharon Dell ◽  
Audrey Dunn Galvin ◽  
Alexandra L. Quittner ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary Ciliary Dyskinesia ◽  
Health Related Quality ◽  
Life Instrument ◽  
Related Quality ◽  
Health Related ◽  
Ciliary Dyskinesia

scholarly journals Validation of a health-related quality of life instrument for primary ciliary dyskinesia (QOL-PCD)

Thorax ◽  
2017 ◽  
Vol 72 (9) ◽  
pp. 832-839 ◽  
Author(s):  
Laura Behan ◽  
Margaret W Leigh ◽  
Sharon D Dell ◽  
Audrey Dunn Galvin ◽  
Alexandra L Quittner ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary Ciliary Dyskinesia ◽  
Health Related Quality ◽  
Life Instrument ◽  
Related Quality ◽  
Health Related ◽  
Ciliary Dyskinesia

scholarly journals Validation of pediatric health‐related quality of life instruments for primary ciliary dyskinesia (QOL‐PCD)

2019 ◽  
Vol 54 (12) ◽  
pp. 2011-2020 ◽  
Author(s):  
Laura Behan ◽  
Margaret W. Leigh ◽  
Sharon D. Dell ◽  
Alexandra L. Quittner ◽  
Claire Hogg ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary Ciliary Dyskinesia ◽  
Health Related Quality ◽  
Pediatric Health ◽  
Related Quality ◽  
Health Related ◽  
Quality Of Life Instruments ◽  
Ciliary Dyskinesia

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

2017 ◽  
Vol 26 (9) ◽  
pp. 2265-2285 ◽  
Author(s):  
Laura Behan ◽  
Bruna Rubbo ◽  
Jane S. Lucas ◽  
Audrey Dunn Galvin
Keyword(s):  
Quality Of Life ◽  
Primary Ciliary Dyskinesia ◽  
Age Groups ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Uk ◽  
The Impact ◽  
Ciliary Dyskinesia

Abstract Background Primary ciliary dyskinesia (PCD) is a rare genetic disorder characterised by progressive sinopulmonary disease, with symptoms starting soon after birth. The aim of this study is to critically review, analyse, and synthesise the literature in order to understand the experiences of patients with primary ciliary dyskinesia (PCD) and the impact on health-related quality of life. Method MEDLINE, EBSCO, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO and EMBASE were searched according to the inclusion criteria. A qualitative analysis of 14 studies was conducted. Results Fourteen studies were included in the review, five with qualitative methodologies. Studies originated from the UK, USA, Italy, Denmark and Belgium, one study included a survey distributed internationally. Significant relationships were found between age and worsening of respiratory symptoms, physical, and mental domains of health-related quality of life, with a greater decline compared with reference populations. Variations between the UK and Italy were found for health-related quality of life and its correlation with time since diagnosis. PCD was found to have a physical impact in all age groups: patients found it difficult to keep up with others, and found energy levels were easily depleted compared to family or peers. In terms of social impact, symptoms lead to embarrassment and a sense of isolation, with patients concealing symptoms and/or their diagnosis. In turn, isolation was also linked with the lack of public and medical knowledge. In relation to emotional impact, anxiety was reported in a number of qualitative studies; patients were anxious about getting sick or when thinking about their future health. The burden of treatment and factors influencing adherence were also discussed in depth. Conclusion Health-related quality of life decreases with age in patients with PCD. For all age groups, PCD was found to greatly impact physical, emotional, social functioning, and treatment burden. More research is needed on the psychosocial impact of the illness, disease burden and its effect on quality of life.

scholarly journals Health-related quality of life and unmet needs in patients with primary ciliary dyskinesia

2009 ◽  
Vol 35 (4) ◽  
pp. 787-794 ◽  
Author(s):  
M. Pifferi ◽  
A. Bush ◽  
M. Di Cicco ◽  
U. Pradal ◽  
V. Ragazzo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary Ciliary Dyskinesia ◽  
Unmet Needs ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Ciliary Dyskinesia

scholarly journals Health related quality of life in adult primary Ciliary dyskinesia patients in Cyprus: development and validation of the Greek version of the QOL-PCD questionnaire

2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Phivos Ioannou ◽  
Panayiotis Kouis ◽  
Maria G. Kakkoura ◽  
Margarita Kaliva ◽  
Aristoula Toliopoulou ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary Ciliary Dyskinesia ◽  
Health Related Quality ◽  
Greek Version ◽  
Related Quality ◽  
Health Related ◽  
Development And Validation ◽  
Ciliary Dyskinesia

scholarly journals Primary Ciliary Dyskinesia: First Health-related Quality of Life Measures for Pediatric Patients

2016 ◽  
Author(s):  
Sharon D Dell ◽  
Margaret W Leigh ◽  
Jane S Lucas ◽  
Thomas W Ferkol ◽  
Michael R Knowles ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary Ciliary Dyskinesia ◽  
Pediatric Patients ◽  
Health Related Quality ◽  
Quality Of Life Measures ◽  
Related Quality ◽  
Health Related ◽  
Ciliary Dyskinesia

Infant health-related Quality of life Instrument

2018 ◽  
Author(s):  
Ruslan Jabrayilov ◽  
◽  
Antoinette D. I. van Asselt ◽  
Karin M. Vermeulen ◽  
Sheri Volger ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Infant Health ◽  
Health Related Quality ◽  
Life Instrument ◽  
Related Quality ◽  
Health Related
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