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Keywords:

  • costs;
  • genetic nurse counsellor;
  • genetics clinics;
  • patient satisfaction;
  • pilot study;
  • primary care;
  • questionnaire;
  • research report

Aim.  This 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.

Background.  Genetic 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.

Methods.  A 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.

Results.  Between 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.

Conclusion.  Patients 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.