Genetics for Patients project: working with patient groups to improve clinical genetics services

Marion McAllister has been working with the Genetic Interest Group (GIG) for the last year on a study to develop a questionnaire to capture the patient benefits from using clinical genetics services. The questionnaire, once finalised, could be used to compare new interventions with usual care, so that services could be developed to better meet the needs of patients and their families.

The objective in this phase of the research was to select the best-performing 20-30 questions from a draft set of 84 possible questions, developed from interview and focus group data from a previous study. For this part of the research, the aim was to recruit up to 420 members of patient support groups for genetic conditions to complete the draft 84-item questionnaire. The partnership with GIG has been highly successful, as together, Marion and Melissa Hillier from GIG have successfully recruited over 540 members of patient support groups for genetic conditions, who have completed the 84-item version of the questionnaire. So, the target of 420 has been greatly exceeded. Responses from participants indicate that they find the questions on the questionnaire both relevant and important, and the large numbers willing to complete the long questionnaire is further testament to this.

This data were then analysed to select the best-performing 21 items. The shorter questionnaire will be fully tested with patients of a clinical genetics service in the next phase of this research, which is planned to start in autumn 2009.

Find out more at the project’s website: www.geneticsforpatients.org.uk