A quality-of-life measure for adults with primary ciliary dyskinesia: QOL-PCD

Jane S. Lucas, Laura Behan, Audrey Dunn Galvin, Adrianne Alpern, Anjana M. Morris, Mary P. Carroll, Michael R. Knowles, Margaret W. Leigh, Alexandra L. Quittner

Research output: Contribution to journalArticlepeer-review

34 Scopus citations

Abstract

Primary ciliary dyskinesia (PCD) is characterised by chronic suppurative lung disease, rhino-sinusitis, hearing impairment and sub-fertility. We have developed the first multidimensional measure to assess health-related quality of life (HRQoL) in adults with PCD (QOL-PCD). Following a literature review and expert panel meeting, open-ended interviews with patients investigated the impact of PCD on HRQoL in the UK and North America (n=21). Transcripts were content analysed to derive saturation matrices. Items were rated for relevance by patients (n=49). Saturation matrices, relevance scores, literature review, evaluation of existing measures, and expert opinion contributed to development of a preliminary questionnaire. The questionnaire was refined following cognitive interviews (n=18). Open-ended interviews identified a spectrum of issues unique to adults with PCD. Saturation matrices confirmed comprehensive coverage of content. QOL-PCD includes 48 items covering the following seven domains: Physical Functioning, Emotional Functioning, Treatment Burden, Respiratory and Sinus Symptoms, Ears and Hearing, Social Functioning, and Vitality and Health Perceptions. Cognitive testing confirmed that content was comprehensive and the items were well-understood by respondents. Content validity and cognitive testing supported the items and structure. QOL-PCD has been translated into other languages and is awaiting psychometric testing.

Original languageEnglish (US)
Pages (from-to)375-383
Number of pages9
JournalEuropean Respiratory Journal
Volume46
Issue number2
DOIs
StatePublished - Aug 1 2015

ASJC Scopus subject areas

  • Pulmonary and Respiratory Medicine

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