A prospective cohort study assessing clinical referral management &amp; workforce allocation within a UK regional medical genetics service

Benjamin, Caroline; Houghton, Catherine; Foo, Claire; Edgar, Chris; Mannion, Gail; Birch, Jan; Ellis, Ian O.; Weber, Astrid

doi:10.1038/ejhg.2015.33

Cited by 8 publications

(12 citation statements)

References 36 publications

(32 reference statements)

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“…Both the Australian and UK participants highlighted recent changes to clinical service structures promoting opportunities for GC‐led appointments. This is consistent with a recent UK study, reporting that GCs contributed to 95% of patient contacts, and led on 46% of cases (Benjamin et al, ). Similarly, in the USA, Hannig et al () trialed an approach where GCs triaged clients not needing clinical examinations into a general genetic counseling clinic with a CG advising their practice.…”

Section: Discussionsupporting

confidence: 92%

“…Genetic testing within a multi‐disciplinary context is an approach recently employed in Australia (Mallett, Fowles, McGaughran, Healy, & Patel, ; Pokharel, Hacker, & Andrews, ). The growing importance of GCs within MDT was acknowledged in this study and is consistent with recent European and Australian studies (Barlow‐Stewart et al, ; Benjamin et al, ; Cordier, Lambert, Voelckel, Hosterey‐Ugander, & Skirton, ; Middleton et al, ; Skirton, Cordier, Ingvoldstad, Taris, & Benjamin, ). Pestoff, Ingvoldstad, and Skirton ()'s exploration of the time investment and “value‐adding” by GCs, identified four key factors unique to GC service: case management, holistic care, accessibility, and continued support.…”

Section: Discussionsupporting

confidence: 91%

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Role and practice evolution for genetic counseling in the genomic era: The experience of Australian and UK genetics practitioners

Dwarte

Barlow‐Stewart

O’Shea

et al. 2018

Journal of Genetic Counseling

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Facilitating informed decision‐making regarding genetic testing is a core component of genetic counseling practice. Internationally, genetic testing is shifting toward gene panels and genomic testing, including whole exome and whole genome sequencing to improve diagnostic yield and cost‐effectiveness. This study explored genetics practitioners’ current experience with panels and genomic tests and the associated evolution of genetic counseling practice. Genetics practitioners with genomic testing experience, were purposively invited to participate in a semi‐structured telephone interview and to snowball the invitation to colleagues. Interviews conducted with participants residing in Australia (n = 9) and the UK (n = 5) were transcribed and analyzed using an inductive thematic approach. Three themes emerged: (a) Role delineation: current roles, future roles, and the influence of increasing complexity; (b) The evolving spectrum of practice: blurred boundaries between research and clinical services; impact on facilitation of informed consent; and return of results strategies; and (c) Policy and governance needs: equality of access; achieving consistent variant interpretation, reporting, and responsibility for review; managing incidental findings; and professional regulation for Australian genetic counselors. These exploratory data highlight that genetic counseling practice and the essential role of facilitating informed consent are evolving but remain patient‐centered, with core skills underpinning practitioners’ capacity to adapt.

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Section: Discussionsupporting

confidence: 92%

Section: Discussionsupporting

confidence: 91%

Role and practice evolution for genetic counseling in the genomic era: The experience of Australian and UK genetics practitioners

Dwarte

Barlow‐Stewart

O’Shea

et al. 2018

Journal of Genetic Counseling

View full text Add to dashboard Cite

show abstract

“…[14][15][16][17] In addition, the results seem to support an experiential clinical training requirement, in addition to academic and vocational qualifications, in order to qualify as a genetic counselor. Practical experience is already required by 8,[18][19][20] Similarly, in a study by Skirton et al, to determine the core curriculum for Master programs in genetic counseling, participating experts concluded that in addition to essential topics to be covered, 50% of the educational programs should be comprised of clinical practice. 12 means that there are huge differences in clinical experience in novice genetic counselors, even after accessing specialized training programs.…”

Section: Discussionmentioning

confidence: 99%

“…In addition, the results seem to support an experiential clinical training requirement, in addition to academic and vocational qualifications, in order to qualify as a genetic counselor. Practical experience is already required by some (but not all) registration systems, that is, GCRB (genetic counseling registration board) in the United Kingdom and the EBMG in Europe, and is included in the new MSc program for genomic counselors in the United Kingdom (to commence in 2017) …”

Section: Discussionmentioning

confidence: 99%

“…Core competences of genetic counselors, as identified by the European Board of Medical Genetics working group for genetic counselors and nurses 8. Findings from other studies also describe similar tasks related to direct patient care, undertaken by genetic counselors in the clinical environment 7,11,19. The fundamental tasks and core competences could be particularly useful when creating national registration guidelines for genetic counseling professionals.…”

mentioning

confidence: 91%

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How practical experiences, educational routes and multidisciplinary teams influence genetic counselors' clinical practice in Europe

et al. 2018

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The main objective of our study was to explore whether, and to what extent, genetic counselors' characteristics impact on their tasks in practice. Specifically, we explored the complementariness between genetic counselors and medical geneticists and therefore looked at the most relevant tasks of genetic counselors, according to genetic counselors themselves and according to the medical geneticists they work with. A total of 104 genetic counselors and 29 medical geneticists from 15 countries completed a purposefully designed questionnaire. Results showed that most genetic counselors in Europe perform similar tasks, irrespective of their backgrounds. When looking at the factors influencing genetic counselors' roles data showed that the type of tasks performed by genetic counselors is associated with the years of experience in the field, not with their background or education. Of particular interest was the consensus between genetic counselors and medical geneticists regarding the genetic counselor's role. Not surprisingly, tasks with more psychosocial implications were seen as genetic counselors' eligibility while tasks with more medical implications were seen as medical geneticists' attribution. Our study shows that most genetic counselors work in tune with international recommendations and seem to be supportive of multidisciplinary teams. Corroborating our data with previous research, we discuss potential implications for practice and training in genetic counseling.

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A comparative study of patients’ perceptions of genetic and genomic medicine services in California and Malaysia

et al. 2018

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In the era of personalized and genomic medicine, awareness of patients with rare diseases is increasing as new approaches to diagnosis and treatment are developed. This study examined perceived barriers experienced by families with rare diseases and explored possible differences between participants in Malaysia and California, USA. The study involved N = 108 participants recruited in genetics clinic appointments at the University of Malaya Medical Center and three sites in Southern California. Participants completed a survey involving multiple choice and Likert scale items pertaining to perceived barriers to access genetics-related healthcare. Results from this study provide evidence of similar perceived barriers, despite differences in the two populations. Participants selected the expansion of healthcare provider knowledge of rare diseases to be the most beneficial approach to overcome perceived barriers. In both locations, it was also noted that travel distance to clinic was not perceived as a large stress factor. Taking these observations together, a healthcare model with a central location of providers well-versed in medical genetics may be considered if further data support our findings. The data from this study support a need for improving healthcare provider knowledge of genetics. Future studies exploring how these perceived stress factors are impacting families as well as different methods of educating providers are suggested by findings from the study, as well as studies querying the opinions of those who are unable to access genetics services.

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A prospective cohort study assessing clinical referral management & workforce allocation within a UK regional medical genetics service

Cited by 8 publications

References 36 publications

Role and practice evolution for genetic counseling in the genomic era: The experience of Australian and UK genetics practitioners

Role and practice evolution for genetic counseling in the genomic era: The experience of Australian and UK genetics practitioners

How practical experiences, educational routes and multidisciplinary teams influence genetic counselors' clinical practice in Europe

A comparative study of patients’ perceptions of genetic and genomic medicine services in California and Malaysia

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