Valuing preferences for the process and outcomes of clinical genetics services

Abstract

Understanding preferences for the process and outcomes of clinical genetics services (CGS) is a first step to developing these services appropriately.

The aim of this study was to quantify the relative importance of attributes defining the process of service delivery and the patient outcomes of CGS.

An online hybrid conjoint analysis discrete choice experiment (CA-DCE) was piloted in a purposive sample (n = 37) of CGS patients and non-patients to identify (i) service attributes (n = 13) perceived to facilitate informed decision making; (ii) relative preferences for six attributes (5 process, 1 outcome: ability to make an informed decision). A three-step approach was taken to link the data from the CA-DCE using hierarchical information integration and ordered logit and multinomial logit models. Marginal willingness-to-pay (WTP) values were calculated.

Services that facilitate informed decision making, with shorter waiting times and involving pre-consultation contact were preferred. Estimated WTP values were: service location (A 3170; pound 95 % CI -391 to 15,098); waiting time (-A 1080; pound 95 % CI -3659 to -603); pre-consultation contact (A 7765; pound 95 % CI 2542-33,937); improved informed decision making (A 2254; pound 95 % CI 775-9866).

This study suggests that hybrid stated preference experiments offer a practical solution to understanding preferences for how CGS services are delivered.