Telegenetics or In-Person Genetic Counselling
Ориентир для пациента и семьи
Простыми словами
Автоматическая сводка по структурированным данным реестра. Она помогает сориентироваться, но не заменяет официальный протокол или оценку врача.
- Что изучают
- В протоколе указаны: Patients referred to CGS at NCCS for HBOC or Lynch syndrome pre-test genetic counselling..
- Кому может быть актуально
- Состояния в реестре: Genetic Counselling. Базовые параметры: от 21 лет · Все.
- Что важно проверить
- Возраст, диагноз и пол — только базовые ориентиры. Предыдущее лечение, анализы и другие обязательные условия указаны ниже в критериях участия.
- Где проводится
- Сингапур
- Следующий шаг
- Сохраните исследование, покажите его лечащему врачу и уточните актуальный статус у исследовательского центра. Расходы, документы и поездка →
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Официальное название
Telegenetics or In-Person Genetic Counselling: A Comparison of Clinical Outcomes and Cost
Обзор
This study aims to compare clinical outcomes (informed choice and genetic counselling outcomes) and cost (provider and patient time, travel, and telehealth platform) between telegenetics and in-person genetic counselling.
Подробное описание
This study will compare the patient-reported outcomes of telegenetics with in-person consultations for participants considering germline testing for HBOC or Lynch syndrome. It will clarify if telegenetics is a feasible and non-inferior alternative to in-person cancer genetic counselling. Participant responses are important stakeholder views to guide the design of telegenetics to become a mainstream service delivery model welcomed by patients.
It aims to recruit 150 prospective consecutive patients attending genetic counselling for Hereditary Breast and Ovarian Cancer (HBOC) and Lynch Syndrome in Clinical Genetic Services (CGS) at National Cancer Centre Singapore (NCCS).
Upon completion of the genetic consultation appointments, patients will be completing a series of questions evaluating cognitive and psychosocial outcomes either via hardcopy in-person or online internet-facing questionnaire.
Вмешательства
- Другое Patients referred to CGS at NCCS for HBOC or Lynch syndrome pre-test genetic counselling.
Patients are given a series of questions evaluating cognitive and psychosocial outcomes, either via hardcopy in-person or online internet-facing questionnaire.
Первичные конечные точки
- Genomics Outcome Scale [Срок оценки: Up to 2 weeks after consultation]
Вторичные конечные точки (3)
- Adapted Multidimensional Measure of Informed Choice (MMIC) for Hereditary Breast and Ovarian Cancer (HBOC) and Lynch [Срок оценки: Up to 2 weeks after consultation]
- Genetic Counselling Satisfaction Scale [Срок оценки: Up to 2 weeks after consultation]
- Telehealth Patient Survey [Срок оценки: Up to 2 weeks after consultation]
Критерии участия
Критерии включения
- Age ≥ 21 years old.
- Patients referred to CGS at NCCS for HBOC or Lynch syndrome pre-test genetic counselling.
- Able to read and understand the English Language.
- Able to consent and agree to be randomized to either telegenetics or in-person genetic counselling.
Критерии исключения
- Under the age of 21 years old.
- Patients who require genetic results urgently.
- Cognitive difficulty/ impairment or current psychiatric or physical illness (visual/ hearing/ neurological) which impairs sound judgement and accurate reporting of medical history over video consultation.
Критерии приведены из реестра в оригинале (на английском). Окончательную оценку соответствия проводит исследовательский центр.
Здоровые добровольцы: Нет
Дизайн исследования
- Модель наблюдения
- Когортное
Центры проведения
Сингапур · 1 центр
- National Cancer Centre Singapore — Singapore
Публикации
- Lee AKF, Cho RHW, Lau EHL, Cheng HK, Wong EWY, Ku PKM, Chan JYK, Yeung ZWC. Mitigation of head and neck cancer service disruption during COVID-19 in Hong Kong through telehealth and multi-institutional collaboration. Head Neck. 2020 Jul;42(7):1454-1459. doi: 10.1002/hed.26226. Epub 2020 May 7. PMID 32357277
- Lonergan PE, Washington Iii SL, Branagan L, Gleason N, Pruthi RS, Carroll PR, Odisho AY. Rapid Utilization of Telehealth in a Comprehensive Cancer Center as a Response to COVID-19: Cross-Sectional Analysis. J Med Internet Res. 2020 Jul 6;22(7):e19322. doi: 10.2196/19322. PMID 32568721
- Pramesh CS, Badwe RA. Cancer Management in India during Covid-19. N Engl J Med. 2020 May 14;382(20):e61. doi: 10.1056/NEJMc2011595. Epub 2020 Apr 28. No abstract available. PMID 32343498
- van de Haar J, Hoes LR, Coles CE, Seamon K, Frohling S, Jager D, Valenza F, de Braud F, De Petris L, Bergh J, Ernberg I, Besse B, Barlesi F, Garralda E, Piris-Gimenez A, Baumann M, Apolone G, Soria JC, Tabernero J, Caldas C, Voest EE. Caring for patients with cancer in the COVID-19 era. Nat Med. 2020 May;26(5):665-671. doi: 10.1038/s41591-020-0874-8. Epub 2020 Apr 16. PMID 32405058
- Wong ZW, Cross HL. Telehealth in cancer care during the COVID-19 pandemic. Med J Aust. 2020 Sep;213(5):237-237.e1. doi: 10.5694/mja2.50740. Epub 2020 Aug 16. No abstract available. PMID 32803783
- Dickinson R, Hall S, Sinclair JE, Bond C, Murchie P. Using technology to deliver cancer follow-up: a systematic review. BMC Cancer. 2014 May 3;14:311. doi: 10.1186/1471-2407-14-311. PMID 24885758
- Finnane A, Dallest K, Janda M, Soyer HP. Teledermatology for the Diagnosis and Management of Skin Cancer: A Systematic Review. JAMA Dermatol. 2017 Mar 1;153(3):319-327. doi: 10.1001/jamadermatol.2016.4361. PMID 27926766
- Kubendran S, Sivamurthy S, Schaefer GB. A novel approach in pediatric telegenetic services: geneticist, pediatrician and genetic counselor team. Genet Med. 2017 Nov;19(11):1260-1267. doi: 10.1038/gim.2017.45. Epub 2017 Apr 27. PMID 28471436
Идентификаторы
NCT: NCT04738708 · 002.1