Development of FOCUS‐GC: Framework for Outcomes of Clinical Communication Services in Genetic Counseling

Cragun, Deborah; Zierhut, Heather

doi:10.1007/s10897-017-0145-0

Cited by 34 publications

(33 citation statements)

References 54 publications

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“…However, given our relatively small sample size in a culturally‐diverse Asian population, further studies of similar design are required to confirm our findings. Recently, another PROM has been developed for the measurement of outcomes research related to risk communication in genetic counseling as part of the FOCUS‐GC (Framework for Outcomes of Clinical Communication Services in Genetic Counseling) . Further psychometric evaluation would be useful to determine if it is a useful PROM for measuring clinically significant changes in empowerment.…”

Section: Discussionmentioning

confidence: 99%

Evaluating empowerment in genetic counseling using patient‐reported outcomes

et al. 2019

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Data about patient reported outcomes from cancer genetics services (CGS) are lacking but are essential to guide service evaluation and improvements. We measured improvement in empowerment, following genetic counseling in Singapore using a culturallyadapted version of the Genetic Counseling Outcome Scale (GCOS-24); and sought to identify factors associated with change in empowerment. The GCOS-24 was administered to 155 patients of the CGS, at pre-and post-counseling or testing timepoints. Of which, 110 patients underwent genetic testing. Individual pre-and post-counseling responses were subjected to Rasch analysis; the scale was subsequently split into cognitive control (CC) and emotional control (EC) domains. Associations of baseline characteristics with changes in pre-and post-CC and EC scores were assessed using multiple regression analysis. Both CC and EC scores showed significant improvement following genetic counseling and testing. While all items in the CC domain of being showed increases at follow-up, aspects of EC related to alleviating negative emotions (P = .88) and hopelessness (P = .2) did not show significant improvement. Our study revealed significant improvement in empowerment in patients who have received cancer genetic counseling, while revealing a need to cultivate hope and facilitate the alleviation of negative emotions in patients during genetic counseling.

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Section: Discussionmentioning

confidence: 99%

Evaluating empowerment in genetic counseling using patient‐reported outcomes

et al. 2019

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“…Specifically, we aimed to 1) investigate racial and ethnic differences in genetic counseling experiences including participation in, knowledge and awareness of, perceptions of, motivators to, and barriers to pursuing genetic counseling and 2) catalogue and summarize measures used to study outcomes of genetic counseling in diverse populations using the Framework for Outcomes of Clinical commUnication Services (FOCUS). FOCUS was created to assist in the organization, consolidation, and linking of a broad array of genetic counseling outcomes (Cragun & Zierhut, ). Understanding racial and ethnic minorities’ experiences and outcomes will inform the genetic counseling process in a more culturally competent, patient‐centered manner to produce improved genetic counseling outcomes across diverse populations.…”

Section: Introductionmentioning

confidence: 99%

Racial and ethnic differences in genetic counseling experiences and outcomes in the United States: A systematic review

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Gasser

et al. 2020

Journal of Genetic Counseling

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As genetic counseling services expand and reach a wider catchment of the population, there is a critical need to better understand the impact of services on a greater diversity of patients. We conducted a systematic review to evaluate genetic counseling experiences and outcomes among racial and ethnic minorities. Six databases extracted articles published from 2005 to 2019 that assessed genetic counseling participation, knowledge and awareness, motivators, barriers, perceptions, and outcomes for racial and ethnic minority populations in the United States. Genetic counseling outcomes were categorized using the Framework for Outcomes of Clinical commUnication Services. A total of 1,227 abstracts were identified, of which 23 papers met inclusion criteria. Results suggest the possibility of racial and ethnic differences in some genetic counseling experiences and outcomes but noted differences were not adequately replicated between studies. The few included studies differed greatly in aims, methods, and results, which made comparison across study designs challenging and effectively barred thematic analysis. Additional research is needed that includes more study populations and settings with patients of diverse racial and ethnic backgrounds, as well as more structured study designs that allow for elucidations of differences between White and non‐White populations.

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“…Different national guidelines in Europe recommend genetic counselling before and after genetic testing for breast or ovarian cancer risk 9–12. This healthcare discipline is defined as ‘the process of helping people understand and adapt to the medical, psychological, and familial implications of genetic contributions to disease’,13 and so it aims at responding to counselees’ specific psychosocial problems 14…”

Section: Introductionmentioning

confidence: 99%

Psychosocial problems in women attending French, German and Spanish genetics clinics before and after targeted or multigene testing results: an observational prospective study

et al. 2019

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Objectives and settingAdvances in multigene panel testing for cancer susceptibility has increased the complexity of counselling, requiring particular attention to counselees’ psychosocial needs. Changes in psychosocial problems before and after genetic testing were prospectively compared between genetic test results in women tested for breast or ovarian cancer genetic susceptibility in French, German and Spanish clinics.Participants and measuresAmong 752 counselees consecutively approached, 646 (86%) were assessed after the initial genetic consultation (T1), including 510 (68%) affected with breast cancer, of which 460 (61%) were assessed again after receiving the test result (T2), using questionnaires addressing genetic-specific psychosocial problems (Psychosocial Aspects of Hereditary Cancer (PAHC)-six scales). Sociodemographic and clinical data were also collected.ResultsSeventy-nine (17.2%), 19 (4.1%), 259 (56.3%), 44 (9.6%) and 59 (12.8%) women received aBRCA1/2, another high/moderate-risk pathogenic variant (PV), negative uninformative, true negative (TN) or variant of uncertain significance result (VUS), respectively. On multiple regression analyses, compared with women receiving another result, those with a VUS decreased more in psychosocial problems related to hereditary predisposition (eg,coping with the test result) (ß=−0.11, p<0.05) and familial/social issues (eg,risk communication) (ß=−0.13, p<0.05), almost independently from their problems before testing. Women with a PV presented no change in hereditary predisposition problems and, so as women with a TN result, a non-significant increase in familial/social issues. Other PAHC scales (ie, emotions, familial cancer, personal cancer and children-related issues) were not affected by genetic testing.ConclusionsIn women tested for breast or ovarian cancer genetic risk in European genetics clinics, psychosocial problems were mostly unaffected by genetic testing. Apart from women receiving a VUS result, those with another test result presented unchanged needs in counselling in particular about hereditary predisposition and familial/social issues.

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Development of FOCUS‐GC: Framework for Outcomes of Clinical Communication Services in Genetic Counseling

Cited by 34 publications

References 54 publications

Evaluating empowerment in genetic counseling using patient‐reported outcomes

Evaluating empowerment in genetic counseling using patient‐reported outcomes

Racial and ethnic differences in genetic counseling experiences and outcomes in the United States: A systematic review

Psychosocial problems in women attending French, German and Spanish genetics clinics before and after targeted or multigene testing results: an observational prospective study

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