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

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 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

scholarly journals Comparison of 4 Pediatric Health-Related Quality-of-Life Instruments

2014 ◽  
Vol 34 (5) ◽  
pp. 590-602 ◽  
Author(s):  
Kelly M. Kenzik ◽  
Sanjeev Y. Tuli ◽  
Dennis A. Revicki ◽  
Elizabeth A. Shenkman ◽  
I-Chan Huang
Keyword(s):  
Quality Of Life ◽  
Health Related Quality ◽  
Pediatric Health ◽  
Related Quality ◽  
Health Related ◽  
Quality Of Life Instruments

scholarly journals Reliability of generic quality-of-life instruments in assessing health-related quality of life among children and adolescents with idiopathic nephrotic syndrome: a systematic review

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Ann E. Aronu ◽  
Samuel N. Uwaezuoke ◽  
Uzoamaka V. Muoneke
Keyword(s):  
Quality Of Life ◽  
Nephrotic Syndrome ◽  
Children And Adolescents ◽  
Idiopathic Nephrotic Syndrome ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Generic Quality ◽  
Quality Of Life Instruments

Abstract Introduction Most of the studies reporting the negative impact of idiopathic nephrotic syndrome on health-related quality of life in children and adolescents were conducted with generic quality-of-life instruments rather than disease-specific instruments. The consistency of these studies' findings using these generic instruments is not well established. Aim This systematic review aims to determine the reliability of current generic quality-of-life instruments in assessing health-related quality of life among children and adolescents with idiopathic nephrotic syndrome. Methods We searched the PubMed, MEDLINE, EMBASE, and Google Scholar databases for articles published between 2000 and 2020, using appropriate descriptors. We included primary studies that met the eligibility criteria, independently screened their titles and abstracts, and removed all duplicates during the study-selection process. We resolved disagreements until a consensus was reached on study selection. We independently retrieved relevant data, including the generic quality-of-life instruments and the subjects’ and controls’ aggregate health-related quality of life scores, using a preconceived data-extraction form. Results Ten original articles were selected for qualitative and quantitative analyses. Some of the studies reported the following significant findings. The mean health-related quality of life scores for children with prevalent and incident nephrotic syndrome were 68.6 (range, 52.6–84.6) and 73.7 (range, 55.9–91.5), respectively. Children with idiopathic nephrotic syndrome and their controls with other chronic diseases had median scores of 65 (interquartile range, 59–68.75) and 62.2 (interquartile range, 58.05–65.78). Patients on oral immunosuppressive drug and intravenous rituximab reportedly had median scores of 76.2 and 72.6 and mean scores of 71.4 (range, 55.4–87.4) and 61.6 (range, 42.1–81.1) respectively for quality-of-life assessment on the ‘school functioning domain.’ Conclusions The health-related quality of life scores in patients with idiopathic nephrotic syndrome are consistently low. Lower scores occur in prolonged disease duration and severe clinical phenotypes, whereas the scores are higher than the scores obtained in other chronic diseases. These consistent findings underscore the reliability of the current generic instruments in assessing health-related quality of life in patients with idiopathic nephrotic syndrome.

Adult oral health‐related quality of life instruments: A systematic review

2021 ◽  
Author(s):  
Fedrico Riva ◽  
Mariana Seoane ◽  
Michael Eduardo Reichenheim ◽  
Georgios Tsakos ◽  
Roger Keller Celeste
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Oral Health ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Quality Of Life Instruments
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