Conceptualization, operationalization, and content validity of the EQOL-questionnaire measuring quality of life and participation for persons with disabilities.
BACKGROUND
Measurement of quality of life demands thoroughly developed and validated instruments. The development steps from theory to concepts and from empirical data to items are sparsely described in the literature of questionnaire development. Furthermore, there seems to be a need for an instrument measuring quality of life and participation in a population with diverse disabilities. The aim of this paper was to present and discuss the initial steps in the development of the Electronic Quality of Life questionnaire (EQOL).


METHODS
The development of EQOL included six steps: 1) Establishing conceptual understanding; 2) Development of interview guides which build on the conceptual understanding; 3) Qualitative interviews of 55 participants (10-40 years old) with different types and severities of disabilities; 4) Conceptualization of domains identified in the qualitative data through thematic analysis; 5) Operationalization of the identified domains into items and; 6) Evaluation of content validity of the first version of the EQOL-measure. Content validity was examined by cognitive interviews with participants in the target group as well as by continuous feedback from an advisory board.


RESULTS
We identified six domains (function and health, environment (physical and social), social network, wellbeing, occupation, and managing strategies) based on themes derived from the qualitative interviews and on conceptual discussions within the author group. These domains were incorporated in a conceptual model and items were generated to measure the content of each domain. Participants expressed satisfaction with EQOL but most participants felt that there were too many items.


CONCLUSIONS
In total, 191 items were included in the questionnaire. Participants felt that the EQOL-questionnaire was relevant to their quality of life and participation. We have shown that it is possible to include quality of life and participation for people with various disabilities in one instrument. Although capturing less detail than a condition specific instrument, EQOL includes aspects perceived important for people with disabilities who are not included in general surveys. This is relevant when for example evaluating environmental adaptations and when comparing populations with various disabilities.
['Jespersen|Louise Norman|LN|', 'Michelsen|Susan Ishøy|SI|', 'Holstein|Bjørn Evald|BE|', 'Tjørnhøj-Thomsen|Tine|T|', 'Due|Pernille|P|']
D000293:Adolescent D000328:Adult D002648:Child D006233:Disabled Persons D005260:Female D006801:Humans D008297:Male D011788:Quality of Life D015203:Reproducibility of Results D012107:Research Design D012944:Social Support D011795:Surveys and Questionnaires D055815:Young Adult
Conceptualization Operationalization Content validity Measurement Quality of life Participation Disability Instrument Questionnaire