The Long-Term Conditions Questionnaire: conceptual framework and item development.
OBJECTIVE
To identify the main issues of importance when living with long-term conditions to refine a conceptual framework for informing the item development of a patient-reported outcome measure for long-term conditions.


METHODS
Semi-structured qualitative interviews (n=48) were conducted with people living with at least one long-term condition. Participants were recruited through primary care. The interviews were transcribed verbatim and analyzed by thematic analysis. The analysis served to refine the conceptual framework, based on reviews of the literature and stakeholder consultations, for developing candidate items for a new measure for long-term conditions.


RESULTS
Three main organizing concepts were identified: impact of long-term conditions, experience of services and support, and self-care. The findings helped to refine a conceptual framework, leading to the development of 23 items that represent issues of importance in long-term conditions. The 23 candidate items formed the first draft of the measure, currently named the Long-Term Conditions Questionnaire.


CONCLUSIONS
The aim of this study was to refine the conceptual framework and develop items for a patient-reported outcome measure for long-term conditions, including single and multiple morbidities and physical and mental health conditions. Qualitative interviews identified the key themes for assessing outcomes in long-term conditions, and these underpinned the development of the initial draft of the measure. These initial items will undergo cognitive testing to refine the items prior to further validation in a survey.
Health Services Research Unit, Nuffield Department of Population Health, University of Oxford, Oxford.
Michele
M
Peters
Health Services Research Unit, Nuffield Department of Population Health, University of Oxford, Oxford.
Caroline M
CM
Potter
Health Services Research Unit, Nuffield Department of Population Health, University of Oxford, Oxford.
Laura
L
Kelly
Health Services Research Unit, Nuffield Department of Population Health, University of Oxford, Oxford.
Cheryl
C
Hunter
Health Services Research Unit, Nuffield Department of Population Health, University of Oxford, Oxford.
Elizabeth
E
Gibbons
Health Services Research Unit, Nuffield Department of Population Health, University of Oxford, Oxford.
Crispin
C
Jenkinson
Health Services Research Unit, Nuffield Department of Population Health, University of Oxford, Oxford.
Angela
A
Coulter
Personal Social Services Research Unit, University of Kent, Canterbury.
Julien
J
Forder
Personal Social Services Research Unit, University of Kent, Canterbury.
Ann-Marie
AM
Towers
Nuffield Department of Primary Health Care Sciences, University of Oxford, Oxford; Broadshires Health Centre, Carterton, UK.
Christine
C
A'Court
Health Services Research Unit, Nuffield Department of Population Health, University of Oxford, Oxford.
Ray
R
Fitzpatrick
conceptual framework; long-term conditions; patient-reported outcome measure; qualitative interviews