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AimThis paper reports a pilot study to test the feasibility of providing genetic nurse counsellor clinics in primary care in the United Kingdom, to develop a questionnaire to evaluate patients' satisfaction with their genetics appointments, and to establish patient and provider costs.BackgroundGenetic counsellors are healthcare professionals with experience in medical genetics and counselling and often have a professional background in nursing, science, genetics, psychology, or public health and work as members of multidisciplinary teams. Professional genetic counsellor accreditation is possible in the United Kingdom, United States of America, Australia and Canada. Increasing referrals to specialist genetics services have precipitated a review of models of service delivery in the United Kingdom.MethodsA random half of 74 general practices in three primary care trusts were selected for the study, and the patients registered with these practices and referred to the clinical genetics service, were offered an appointment in primary care with a genetic nurse counsellor. A clinic follow-up postal questionnaire was developed.ResultsBetween July 2002 and May 2003, 64 appointments were offered to patients referred and registered with the selected general practices, 45 (79%) patients attended their appointment and 34 (77%) returned their follow-up questionnaire. Total mean satisfaction score was high and patients were most satisfied with the information and affective domains of the appointment. Those referred with a family history of cancer were more satisfied than those referred with a non-cancer diagnosis. Forty-eight per cent of patients seen by the genetic nurse counsellor did not need to attend a further appointment with a doctor in secondary care. Patients were satisfied with the travel time and distance to clinic and patient clinic costs were low.ConclusionPatients do attend genetic nurse counsellor clinics in primary care, and are satisfied with the new location. A large cluster randomized controlled trial is now being conducted to obtain a controlled comparison of clinic attendance rates and patients' satisfaction with clinics in primary vs. secondary care settings.

Original publication




Journal article


Journal of advanced nursing

Publication Date





591 - 604


Department of Genetics, Wessex Clinical Genetics Service, Southampton, UK.


Humans, Neoplasms, Nursing Care, Prospective Studies, Feasibility Studies, Pilot Projects, Genetic Counseling, Family Practice, Travel, Adolescent, Adult, Aged, Aged, 80 and over, Middle Aged, Child, Child, Preschool, Infant, Family Health, Referral and Consultation, Patient Satisfaction, Primary Health Care, Patient Acceptance of Health Care, Female, Male, Surveys and Questionnaires, United Kingdom