Development and pilot testing of a decision aid for navigating breast cancer survivorship care
Abstract Background The predominant oncologist-led model in many countries is unsustainable to meet the needs of a growing cohort of breast cancer survivors (BCS). Despite available alternative models, adoption rates have been poor. To help BCS navigate survivorship care, we aimed to systematically...
| Main Authors: | , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2022-12-01
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| Series: | BMC Medical Informatics and Decision Making |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12911-022-02056-5 |
| _version_ | 1798005151390236672 |
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| author | Yu Ke Ivy Cheng Gretchen Ser Hua Tan Rose Wai Yee Fok Jack Junjie Chan Kiley Wei-Jen Loh Alexandre Chan |
| author_facet | Yu Ke Ivy Cheng Gretchen Ser Hua Tan Rose Wai Yee Fok Jack Junjie Chan Kiley Wei-Jen Loh Alexandre Chan |
| author_sort | Yu Ke |
| collection | DOAJ |
| description | Abstract Background The predominant oncologist-led model in many countries is unsustainable to meet the needs of a growing cohort of breast cancer survivors (BCS). Despite available alternative models, adoption rates have been poor. To help BCS navigate survivorship care, we aimed to systematically develop a decision aid (DA) to guide their choice of follow-up care model and evaluate its acceptability and usability among BCS and health care providers (HCPs). Methods We recruited BCS aged ≥ 21 years who have completed primary treatment and understand English. BCS receiving palliative care or with cognitive impairment were excluded. HCPs who routinely discussed post-treatment care with BCS were purposively sampled based on disciplines. Each participant reviewed the DA during a semi-structured interview using the ‘think aloud’ approach and completed an acceptability questionnaire. Descriptive statistics and directed content analysis were used. Results We conducted three rounds of alpha testing with 15 BCS and 8 HCPs. All BCS found the final DA prototype easy to navigate with sufficient interactivity. The information imbalance favouring the shared care option perceived by 60% of BCS in early rounds was rectified. The length of DA was optimized to be ‘just right’. Key revisions made included (1) presenting care options side-by-side to improve perceived information balance, (2) creating dedicated sections explaining HCPs’ care roles to address gaps in health system contextual knowledge, and (3) employing a multicriteria decision analysis method for preference clarification exercise to reflect the user’s openness towards shared care. Most BCS (73%) found the DA useful for decision-making, and 93% were willing to discuss the DA with their HCPs. Most HCPs (88%) agreed that the DA was a reliable tool and would be easily integrated into routine care. Conclusions Our experience highlighted the need to provide contextual information on the health care system for decisions related to care delivery. Developers should address potential variability within the care model and clarify inherent biases, such as low confidence levels in primary care. Future work could expand on the developed DA’s informational structure to apply to other care models and leverage artificial intelligence to optimize information delivery. |
| first_indexed | 2024-04-11T12:34:30Z |
| format | Article |
| id | doaj.art-74261759b5c84f2eaaac16913a583d77 |
| institution | Directory Open Access Journal |
| issn | 1472-6947 |
| language | English |
| last_indexed | 2024-04-11T12:34:30Z |
| publishDate | 2022-12-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Medical Informatics and Decision Making |
| spelling | doaj.art-74261759b5c84f2eaaac16913a583d772022-12-22T04:23:39ZengBMCBMC Medical Informatics and Decision Making1472-69472022-12-0122111610.1186/s12911-022-02056-5Development and pilot testing of a decision aid for navigating breast cancer survivorship careYu Ke0Ivy Cheng1Gretchen Ser Hua Tan2Rose Wai Yee Fok3Jack Junjie Chan4Kiley Wei-Jen Loh5Alexandre Chan6Department of Pharmacy, National University of SingaporeDepartment of Pharmacy, National Cancer Centre SingaporeDepartment of Pharmacy, National University of SingaporeDivision of Medical Oncology, National Cancer Centre SingaporeDivision of Medical Oncology, National Cancer Centre SingaporeDivision of Supportive and Palliative Care, National Cancer Centre SingaporeDepartment of Pharmacy, National Cancer Centre SingaporeAbstract Background The predominant oncologist-led model in many countries is unsustainable to meet the needs of a growing cohort of breast cancer survivors (BCS). Despite available alternative models, adoption rates have been poor. To help BCS navigate survivorship care, we aimed to systematically develop a decision aid (DA) to guide their choice of follow-up care model and evaluate its acceptability and usability among BCS and health care providers (HCPs). Methods We recruited BCS aged ≥ 21 years who have completed primary treatment and understand English. BCS receiving palliative care or with cognitive impairment were excluded. HCPs who routinely discussed post-treatment care with BCS were purposively sampled based on disciplines. Each participant reviewed the DA during a semi-structured interview using the ‘think aloud’ approach and completed an acceptability questionnaire. Descriptive statistics and directed content analysis were used. Results We conducted three rounds of alpha testing with 15 BCS and 8 HCPs. All BCS found the final DA prototype easy to navigate with sufficient interactivity. The information imbalance favouring the shared care option perceived by 60% of BCS in early rounds was rectified. The length of DA was optimized to be ‘just right’. Key revisions made included (1) presenting care options side-by-side to improve perceived information balance, (2) creating dedicated sections explaining HCPs’ care roles to address gaps in health system contextual knowledge, and (3) employing a multicriteria decision analysis method for preference clarification exercise to reflect the user’s openness towards shared care. Most BCS (73%) found the DA useful for decision-making, and 93% were willing to discuss the DA with their HCPs. Most HCPs (88%) agreed that the DA was a reliable tool and would be easily integrated into routine care. Conclusions Our experience highlighted the need to provide contextual information on the health care system for decisions related to care delivery. Developers should address potential variability within the care model and clarify inherent biases, such as low confidence levels in primary care. Future work could expand on the developed DA’s informational structure to apply to other care models and leverage artificial intelligence to optimize information delivery.https://doi.org/10.1186/s12911-022-02056-5CancerAlpha testingDevelopmentSurvivorshipDecision aidShared decision making |
| spellingShingle | Yu Ke Ivy Cheng Gretchen Ser Hua Tan Rose Wai Yee Fok Jack Junjie Chan Kiley Wei-Jen Loh Alexandre Chan Development and pilot testing of a decision aid for navigating breast cancer survivorship care BMC Medical Informatics and Decision Making Cancer Alpha testing Development Survivorship Decision aid Shared decision making |
| title | Development and pilot testing of a decision aid for navigating breast cancer survivorship care |
| title_full | Development and pilot testing of a decision aid for navigating breast cancer survivorship care |
| title_fullStr | Development and pilot testing of a decision aid for navigating breast cancer survivorship care |
| title_full_unstemmed | Development and pilot testing of a decision aid for navigating breast cancer survivorship care |
| title_short | Development and pilot testing of a decision aid for navigating breast cancer survivorship care |
| title_sort | development and pilot testing of a decision aid for navigating breast cancer survivorship care |
| topic | Cancer Alpha testing Development Survivorship Decision aid Shared decision making |
| url | https://doi.org/10.1186/s12911-022-02056-5 |
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