Health status & Impact of living with Idiopathic Pulmonary Fibrosis (IPF): UK & Ireland Delphi Survey.

Abstract

Introduction: Developing a patient reported outcome measure for a rare condition such as IPF has inherent challenges. There is no consensus with regard to the number of respondents per item required in the preliminary stages of item generation/reduction. We aimed to recruit 300 respondents with IPF.

Methodology: Adopting a patient centred approach, participants were recruited through IPF charities & support groups. An electronic link to the questionnaire was hosted on the charity websites/facebook. Self-selecting participants, confirming a diagnosis of IPF, anonymously recorded their level of agreement / experience with 100 statements about IPF o 4 point Likert scales. IP addresses were checked to detect duplicate responses.

Interim Results: Participants accessing survey n=510; completing survey n=281; completing hard copy n= 20; partially completing survey n=70; not required to complete survey due to a diagnosis other than IPF n=41. 108 participants accessed the survey but did not proceed to the questions. Complete responses male n=181 (65%); age range ≤59y n=55 (19.5%); 60-69 n=109(39%); 70-79 n=93 (33%) ≥ 80y N=24(8.5%). Geographical distribution reported in table 1.

Discussion: Working with IPF charities is feasible, reliable and an efficient way to gather a large volume of responses across UK and Ireland in a short period of time (4 months). This approach has enabled the application of appropriate psychometric analysis to these data.

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