Sinus surgery can improve quality of life, lung infections, and lung function in patients with primary ciliary dyskinesia

2016 ◽  
Vol 7 (3) ◽  
pp. 240-247 ◽  
Author(s):  
Mikkel Christian Alanin ◽  
Kasper Aanaes ◽  
Niels Høiby ◽  
Tania Pressler ◽  
Marianne Skov ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Lung Function ◽  
Primary Ciliary Dyskinesia ◽  
Sinus Surgery ◽  
Improve Quality ◽  
Lung Infections ◽  
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

Yoga and meditation improve quality of life in subjects with moderate-to-very severe COPD without any effect on lung function

2019 ◽  
Author(s):  
Shweta Rasam ◽  
Nitin Vanjare ◽  
Sunil Katkar ◽  
Premji Nirmal ◽  
Vandana Das ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Lung Function ◽  
Improve Quality ◽  
Severe Copd
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