title: A prospective cohort study assessing clinical referral management & workforce allocation within a UK regional medical genetics service.
abstract: Ensuring patient access to genomic information in the face of increasing demand requires clinicians to develop innovative ways of working. This paper presents the first empirical prospective observational cohort study of UK multi-disciplinary genetic service delivery. It describes and explores collaborative working practices including the utilisation and role of clinical geneticists and non-medical genetic counsellors. Six hundred and fifty new patients referred to a regional genetics service were tracked through 850 clinical contacts until discharge. Referral decisions regarding allocation of lead health professional assigned to the case were monitored, including the use of initial clinical contact guidelines. Significant differences were found in the cases led by genetic counsellors and those led by clinical geneticists. Around a sixth, 16.8% (109/650) of referrals were dealt with by a letter back to the referrer or re-directed to another service provider and 14.8% (80/541) of the remaining patients chose not to schedule an appointment. Of the remaining 461 patients, genetic counsellors were allocated as lead health professional for 46.2% (213/461). A further 61 patients did not attend. Of those who did, 86.3% (345/400) were discharged after one or two appointments. Genetic counsellors contributed to 95% (784/825) of total patient contacts. They provided 93.7% (395/432) of initial contacts and 26.8% (106/395) of patients were discharged at that point. The information from this study informed a planned service re-design. More research is needed to assess the effectiveness and efficiency of different models of collaborative multi-disciplinary working within genetics services.
authors.affiliation: 1] Health Research Methodology and Implementation Hub (HeRMI), School of Health, University of Central Lancashire (UCLan), Preston, UK [2] Merseyside and Cheshire Clinical Genetics Service, Liverpool Women's (NHS) Foundation Hospital Trust, Liverpool, UK.
authors.forename: Caroline
authors.initials: C
authors.lastname: Benjamin
authors.affiliation: 1] Merseyside and Cheshire Clinical Genetics Service, Liverpool Women's (NHS) Foundation Hospital Trust, Liverpool, UK [2] Manchester Centre for Genomic Medicine, Central Manchester University Hospitals (NHS) Foundation Trust, Manchester, UK.
authors.forename: Catherine
authors.initials: C
authors.lastname: Houghton
authors.affiliation: Merseyside and Cheshire Clinical Genetics Service, Liverpool Women's (NHS) Foundation Hospital Trust, Liverpool, UK.
authors.forename: Claire
authors.initials: C
authors.lastname: Foo
authors.affiliation: Merseyside and Cheshire Clinical Genetics Service, Liverpool Women's (NHS) Foundation Hospital Trust, Liverpool, UK.
authors.forename: Chris
authors.initials: C
authors.lastname: Edgar
authors.affiliation: Merseyside and Cheshire Clinical Genetics Service, Liverpool Women's (NHS) Foundation Hospital Trust, Liverpool, UK.
authors.forename: Gail
authors.initials: G
authors.lastname: Mannion
authors.affiliation: Merseyside and Cheshire Clinical Genetics Service, Liverpool Women's (NHS) Foundation Hospital Trust, Liverpool, UK.
authors.forename: Jan
authors.initials: J
authors.lastname: Birch
authors.affiliation: Merseyside and Cheshire Clinical Genetics Service, Liverpool Women's (NHS) Foundation Hospital Trust, Liverpool, UK.
authors.forename: Ian
authors.initials: I
authors.lastname: Ellis
authors.affiliation: Merseyside and Cheshire Clinical Genetics Service, Liverpool Women's (NHS) Foundation Hospital Trust, Liverpool, UK.
authors.forename: Astrid
authors.initials: A
authors.lastname: Weber
mesh_terms: D015331:Cohort Studies; D005817:Genetic Counseling; D030342:Genetic Diseases, Inborn / Q000175:diagnosis / Q000453:epidemiology* / Q000473:pathology; D005826:Genetics, Medical; D006801:Humans; D011795:Surveys and Questionnaires; D006113:United Kingdom