Group genetic counseling: An alternate service delivery model in a high risk prenatal screening population

Cloutier, Michel; Gallagher, Lauren; Goldsmith, Claire; Akiki, Salwa; Barrowman, Nick; Morrison, Shawna

doi:10.1002/pd.5149

Cited by 32 publications

(37 citation statements)

References 31 publications

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“…A better counselling model could be to hand out the written information and a link for a decision aid in continuation of the cFTS and then book an appointment for personal counselling the day after. Group counselling followed by the option of a brief individual counselling has also been shown as an acceptable model for genetic counselling …”

Section: Discussionmentioning

confidence: 99%

High risk—What's next? A survey study on decisional conflict, regret, and satisfaction among high‐risk pregnant women making choices about further prenatal testing for fetal aneuploidy

et al. 2019

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Objectives:To investigate decision making among pregnant women when choosing between noninvasive prenatal testing, invasive testing, or no further testing. Methods:Women with a high-risk result from the first trimester screening were invited to fill in two online questionnaires at gestational age 12 to 14 (Q1) and 24 weeks (Q2). The scales used were Decisional Conflict and Regret Scales, Satisfaction with genetic Counselling Scale, and Health-Relevant Personality Inventory.Results: Three hundred thirty-nine women agreed to participate, and the response rates were 76% on Q1 and 88% on Q2. A percentage of 75.4% chose an invasive test, 23.8% chose noninvasive prenatal testing (NIPT), 0.4% chose no further testing, and 0.4% had both NIPT and invasive testing. Among all participants, 13.3% had a high level of decisional conflict. We found that choosing NIPT was associated with a high decisional conflict (p = 0.013), receiving genetic counselling the same day was associated with a high decisional conflict (p = 0.039), and a high satisfaction with the genetic counselling was associated with low decisional conflict (p < 0.001). Furthermore, the personality subtrait "alexithymia" was associated with low decisional conflict (p = 0.043). There was a significant association between high decisional conflict and later decisional regret (p = 0.008). Conclusion:We present evidence that satisfaction with and timing of counselling are important factors to limit decisional conflict. Interestingly, women choosing NIPT had more decisional conflict than women choosing invasive testing.

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Section: Discussionmentioning

confidence: 99%

High risk—What's next? A survey study on decisional conflict, regret, and satisfaction among high‐risk pregnant women making choices about further prenatal testing for fetal aneuploidy

et al. 2019

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“…That is consistent with findings of high levels of satisfaction among individuals receiving genetic counseling across various settings and delivery modes. 9,[19][20][21] A few trials have found greater satisfaction among participants who received individual counseling rather than a decision aid or group counseling 22 or who used a decision aid in addition to usual care genetic counseling; 23 however, they also observed high satisfaction rates overall. Satisfaction has been shown to be correlated with expectations, 24 and since most participants are unfamiliar with genetic counseling before they receive it, 4 low levels of satisfaction stemming from unmet expectations would be unexpected.…”

Section: Discussionmentioning

confidence: 99%

Outcomes of Counseling after Education about Carrier Results: A Randomized Controlled Trial

Lewis

Umstead

Johnston

et al. 2018

The American Journal of Human Genetics

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In-person education and counseling for all people receiving genetic results is the predominant model of disclosure but is challenged by the growing volume of low-impact results generated by sequencing. Evidence suggests that web-based tools may be as effective as in-person counseling at educating individuals about their low-impact results. However, the effects of counseling have not been assessed. To evaluate its utility, carrier results were returned to 459 post-reproductive participants from the ClinSeq cohort within a randomized controlled trial. Participants received education and were randomized to receive counseling or not. Primary outcomes included risk worry, test-related positive experiences, attitudes, and decisional conflict. Secondary outcomes were satisfaction, preferences, and counseling value. There were no differences between participants who received counseling and those who did not in the primary outcomes. Participants who received counseling were more satisfied than those who did not (x¯ = 10.2 and 9.5, respectively, p < 0.002, range: 3-12), although overall satisfaction was high. Most participants (92%) randomized to counseling preferred it and valued it because it provided validation of their reactions and an opportunity for interpersonal interaction. Web-based tools address the challenge of returning low-impact results, and these data provide empiric evidence that counseling, although preferred and satisfying, is not critical to achieving desired outcomes.

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“…In all these conditions, genetic consultation is an important service and it should be provided to family in all stages. Genetic consultation which is tried to be improved technically all the time and be used more effectively [8] is offered by the doctors who are medical genetic specialists in Turkey. Educational level and social and cultural characteristics being spread to a wide spectrum in our country changes the feelings of families towards genetic consultation and the genetic consultant.…”

Section: Discussionmentioning

confidence: 99%

The factors affecting amniocentesis decision by pregnant women in the risk group and the influence of consultant

Yararbaş¹,

Kuşkucu²

2019

Perinatal J

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Risk grubundaki gebelerin amniyosentez karar› almas›ndaki faktörler ve genetik dan›flman›n etkisi Amaç: Do¤um öncesi tan›da günümüzde en s›k amaçlanan hedef Down sendromlu gebelikleri tespit etmektir. Tan›da alt›n standart yöntem olan karyotiplemenin yerini henüz non-invaziv bir yöntem dolduramad›¤›ndan, CVS, amniyosentez gibi bir yöntem için risk alt›ndaki gebelerin seçimi gereklidir. Bu amaçla giriflimsel olmayan yöntemlerle tarama testleri yap›lmakta, riskli gebelere genetik dan›flma verilerek invaziv giriflim karar› aileye b›rak›lmakta-d›r. Yöntem: Perinataloji ve T›bbi Genetik klinik hizmetine sahip bir referans merkezde genetik dan›flma verilen, kromozom analizi aday›; ancak sadece ileri anne yafl› ya da biyokimyasal taramada art-m›fl riski olan, 1000 adet ikinci üç ay gebesi çal›flmaya dahil edildi. Onay veren gebelerin genetik dan›flma ald›klar› s›rada not al›nan efllik eden birey iste¤i, invaziv giriflim karar›, bu karar› almas›nda etkili olan faktörler s›raland›. Bulgular: Gebelerin genetik dan›flma almaya geldiklerinde bir stres ortam›na giriyor hissine sahip olmalar› nedeniyle, efllik eden biriyle genetik dan›flma almay› tercih ettikleri görüldü. Gebelerin yar›s›ndan fazlas› (%52.1) genetik dan›flma ald›ktan sonra karar›-n› paylaflt›. Gebelerin neredeyse üçte ikisi (%63) amniyosentez yapt›rma karar› ald›¤›n› bildirdi. Bu karar› etkileyen faktörlerin da¤›l›m› da genel olarak gebeli¤in aile aç›s›ndan k›ymeti ve invaziv giriflimin olas› riskleri fleklinde s›ralanabilir. Sonuç: Genetik dan›flma t›bbi geneti¤in en önemli hasta hekim iliflkisi araçlar›ndan biridir. Özellikle gebelerde invaziv giriflim ka-rar› almada ve invaziv test sonuçlar›yla birlikte gebeli¤in ilerlemesi konusunda karar vermede, bilgilendirici özelli¤i sayesinde çok etkili olmaktad›r. Bu çal›flmada ülkemizin co¤rafi özelliklere göre demografik da¤›l›m›n› bilmenin, ‹stanbul gibi büyük flehirlerde ise kozmopolit yap› nedeniyle, özellikle sosyokültürel aç›dan çeflitlilik arz eden bir nüfusun hizmet ald›¤›n›n fark›nda olman›n, genetik dan›flmadaki önemini vurgulamaya çal›flt›k.

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Group genetic counseling: An alternate service delivery model in a high risk prenatal screening population

Cited by 32 publications

References 31 publications

High risk—What's next? A survey study on decisional conflict, regret, and satisfaction among high‐risk pregnant women making choices about further prenatal testing for fetal aneuploidy

High risk—What's next? A survey study on decisional conflict, regret, and satisfaction among high‐risk pregnant women making choices about further prenatal testing for fetal aneuploidy

Outcomes of Counseling after Education about Carrier Results: A Randomized Controlled Trial

The factors affecting amniocentesis decision by pregnant women in the risk group and the influence of consultant

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