Development and early‐stage evaluation of a patient portal to enhance familial communication about hereditary cancer susceptibility testing: A patient‐driven approach
Abstract Introduction Genetic testing for hereditary cancer syndromes (HCSs) can improve health outcomes through cancer risk mitigation strategies. Effective communication between tested individuals and their family members is key to reducing the hereditary cancer burden. Our objective was to develo...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Wiley
2023-04-01
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| Series: | Health Expectations |
| Subjects: | |
| Online Access: | https://doi.org/10.1111/hex.13702 |
| _version_ | 1827991350765682688 |
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| author | Samantha Pollard Deirdre Weymann Rosalie Loewen Jennifer Nuk Sophie Sun Kasmintan A. Schrader Chiquita Hessels Dean A. Regier |
| author_facet | Samantha Pollard Deirdre Weymann Rosalie Loewen Jennifer Nuk Sophie Sun Kasmintan A. Schrader Chiquita Hessels Dean A. Regier |
| author_sort | Samantha Pollard |
| collection | DOAJ |
| description | Abstract Introduction Genetic testing for hereditary cancer syndromes (HCSs) can improve health outcomes through cancer risk mitigation strategies. Effective communication between tested individuals and their family members is key to reducing the hereditary cancer burden. Our objective was to develop a patient portal to improve familial communication for patients undergoing HCS genetic testing, followed by an early‐phase evaluation. Methods The portal was developed following the completion of 25 semistructured interviews with individuals having undergone HCS susceptibility testing at BC Cancer. Following initial development, we recruited patients and healthcare providers to provide critical feedback informing portal refinement. Quantitative feedback was summarized using descriptive statistics, and qualitative feedback was synthesized by two reviewers who engaged in iterative discussion within the research team to prioritize recommendations for integration. Results The patient portal includes four key components consisting of (a) targeted educational information about hereditary cancer and HBOC syndrome associated risks and testing process overview, (b) a general frequently asked questions ‘FAQ’ page informed by the qualitative interviews, patient partner feedback, and consultation with the HCP, (c) guidance to support familial communication including a video developed with a patient partner describing their lived experience navigating the communication process and (d) a series of lay summaries of genetic test findings to support information transfer among family members. Thirteen healthcare providers and seven patients participated in user testing. Domains within which participant recommendations were provided included presentation, educational content and process clarification. Conclusions This investigation demonstrates the value of continual integration of patient and provider preferences through the development of tools endeavouring to assist with complex genomics‐informed decision‐making. Our work aims to broaden the population‐wide impact of HCS testing programs by improving communication processes between probands and their potentially affected family members. Patient or Public Contribution This work involved a patient partner who was actively engaged in all aspects of the research investigation including protocol development, review and editing of all study documentation (including that of the previously published qualitative investigation), interpretation of results, as well as reviewing and editing the manuscript. Patient partners and healthcare professionals were recruited as research participants to provide critical feedback on the patient portal. |
| first_indexed | 2024-04-10T00:49:23Z |
| format | Article |
| id | doaj.art-16d472b2dda943cdb2bc0725d6368dec |
| institution | Directory Open Access Journal |
| issn | 1369-6513 1369-7625 |
| language | English |
| last_indexed | 2024-04-10T00:49:23Z |
| publishDate | 2023-04-01 |
| publisher | Wiley |
| record_format | Article |
| series | Health Expectations |
| spelling | doaj.art-16d472b2dda943cdb2bc0725d6368dec2023-03-13T12:33:24ZengWileyHealth Expectations1369-65131369-76252023-04-0126277478410.1111/hex.13702Development and early‐stage evaluation of a patient portal to enhance familial communication about hereditary cancer susceptibility testing: A patient‐driven approachSamantha Pollard0Deirdre Weymann1Rosalie Loewen2Jennifer Nuk3Sophie Sun4Kasmintan A. Schrader5Chiquita Hessels6Dean A. Regier7Cancer Control Research BC Cancer Vancouver British Columbia CanadaCancer Control Research BC Cancer Vancouver British Columbia CanadaCancer Control Research BC Cancer Vancouver British Columbia CanadaHereditary Cancer Program BC Cancer Vancouver British Columbia CanadaHereditary Cancer Program BC Cancer Vancouver British Columbia CanadaHereditary Cancer Program BC Cancer Vancouver British Columbia CanadaLi‐Fraumeni Syndrome Association Canada Vancouver British Columbia CanadaCancer Control Research BC Cancer Vancouver British Columbia CanadaAbstract Introduction Genetic testing for hereditary cancer syndromes (HCSs) can improve health outcomes through cancer risk mitigation strategies. Effective communication between tested individuals and their family members is key to reducing the hereditary cancer burden. Our objective was to develop a patient portal to improve familial communication for patients undergoing HCS genetic testing, followed by an early‐phase evaluation. Methods The portal was developed following the completion of 25 semistructured interviews with individuals having undergone HCS susceptibility testing at BC Cancer. Following initial development, we recruited patients and healthcare providers to provide critical feedback informing portal refinement. Quantitative feedback was summarized using descriptive statistics, and qualitative feedback was synthesized by two reviewers who engaged in iterative discussion within the research team to prioritize recommendations for integration. Results The patient portal includes four key components consisting of (a) targeted educational information about hereditary cancer and HBOC syndrome associated risks and testing process overview, (b) a general frequently asked questions ‘FAQ’ page informed by the qualitative interviews, patient partner feedback, and consultation with the HCP, (c) guidance to support familial communication including a video developed with a patient partner describing their lived experience navigating the communication process and (d) a series of lay summaries of genetic test findings to support information transfer among family members. Thirteen healthcare providers and seven patients participated in user testing. Domains within which participant recommendations were provided included presentation, educational content and process clarification. Conclusions This investigation demonstrates the value of continual integration of patient and provider preferences through the development of tools endeavouring to assist with complex genomics‐informed decision‐making. Our work aims to broaden the population‐wide impact of HCS testing programs by improving communication processes between probands and their potentially affected family members. Patient or Public Contribution This work involved a patient partner who was actively engaged in all aspects of the research investigation including protocol development, review and editing of all study documentation (including that of the previously published qualitative investigation), interpretation of results, as well as reviewing and editing the manuscript. Patient partners and healthcare professionals were recruited as research participants to provide critical feedback on the patient portal.https://doi.org/10.1111/hex.13702decision makingfamilial cancergenetic testinghereditary cancer syndromespatient education |
| spellingShingle | Samantha Pollard Deirdre Weymann Rosalie Loewen Jennifer Nuk Sophie Sun Kasmintan A. Schrader Chiquita Hessels Dean A. Regier Development and early‐stage evaluation of a patient portal to enhance familial communication about hereditary cancer susceptibility testing: A patient‐driven approach Health Expectations decision making familial cancer genetic testing hereditary cancer syndromes patient education |
| title | Development and early‐stage evaluation of a patient portal to enhance familial communication about hereditary cancer susceptibility testing: A patient‐driven approach |
| title_full | Development and early‐stage evaluation of a patient portal to enhance familial communication about hereditary cancer susceptibility testing: A patient‐driven approach |
| title_fullStr | Development and early‐stage evaluation of a patient portal to enhance familial communication about hereditary cancer susceptibility testing: A patient‐driven approach |
| title_full_unstemmed | Development and early‐stage evaluation of a patient portal to enhance familial communication about hereditary cancer susceptibility testing: A patient‐driven approach |
| title_short | Development and early‐stage evaluation of a patient portal to enhance familial communication about hereditary cancer susceptibility testing: A patient‐driven approach |
| title_sort | development and early stage evaluation of a patient portal to enhance familial communication about hereditary cancer susceptibility testing a patient driven approach |
| topic | decision making familial cancer genetic testing hereditary cancer syndromes patient education |
| url | https://doi.org/10.1111/hex.13702 |
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