Parents' perspectives on centralized cleft services for children: the development of a DCE questionnaire

Incorporating user's perspectives in healthcare delivery is important. Simple questionnaires may not capture these as well as a discrete choice experiment (DCE) which enables the exploration of users' trade-offs between different service attributes. Qualitative methods are increasingly used to improve a DCE's face validity, but few studies adequately describe them. This paper describes the qualitative investigations in the development of a DCE questionnaire to elicit parents' perspectives on centralized services for children with cleft lip and palate.

Semi-structured telephone interviews were conducted with 16 parents from across the UK, except Wales. Data analysis was carried out by the constant comparative method.

Five attributes and their levels were inductively identified: usefulness and amount of information (four levels); staff attitude at cleft centres (two levels); continuity of care (two levels); personal costs of attending appointments (four levels); and cleft centres facilities (two levels). An unexpected finding was that parents' sense of responsibility towards their child made a 'willingness-to-travel' attribute unacceptable to them, but they were receptive to a 'willingness-to-pay' attribute.

Using qualitative methods with service users in attribute development for a DCE helps to uncover issues that may not be apparent to researchers or health service staff.