Efficient development and usability testing of decision support interventions for older women with breast cancer

Lifford, Kate J, Edwards, Adrian, Burton, Maria, Harder, Helena, Armitage, Fiona, Morgan, Jenna, Caldon, Lisa, Balachandran, Kirsty, Ring, Alistair, Collins, Karren, Reed, Malcolm, Wyld, Lynda and Brain, Kate (2019) Efficient development and usability testing of decision support interventions for older women with breast cancer. Patient Preference and Adherence, 2019 (13). pp. 131-143. ISSN 1177-889X

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Abstract

Around a third of breast cancers diagnosed each year in the UK are in women aged 70 years and older. However, there are currently no decision support interventions for older women who have a choice between primary endocrine therapy and surgery followed by adjuvant endocrine therapy (surgery+endocrine therapy), or who can choose whether or not to have chemotherapy following surgery. There is also little evidence-based guidance specifically on the management of these older patients. A large UK cohort study is currently underway to address this lack of evidence and to develop two decision support interventions (DESIs) to facilitate shared decision-making with older women about breast cancer treatments. Here we present the development and initial testing of these two DESIs.
An initial prototype DESI was developed for the choice of primary endocrine therapy or surgery+endocrine therapy. Semi-structured interviews with healthy volunteers and patients explored DESI acceptability, usability and utility. A framework approach was used for analysis. A second DESI for the choice of having chemotherapy or not was subsequently developed based on more focused development and testing.
Participants (n=22, aged 75-94 years, 64% healthy volunteers, 36% patients) found the primary endocrine therapy/surgery+endocrine therapy DESI acceptable, and contributed to improved wording and illustrations to address misunderstandings. The chemotherapy DESI (tested with 14 participants, aged 70-87 years, 57% healthy volunteers, 43% patients) was mostly understandable, however suggestions for re-wording sections were made. Most participants considered the DESIs helpful, but highlighted the importance of complementary discussions with clinicians.
It was possible to use a template DESI to efficiently create a second prototype for a different treatment option (chemotherapy). Both DESIs were acceptable and considered helpful to support/augment consultations. Development of acceptable additional DESIs for similar target populations using simplified methods may be an efficient way to develop future DESIs. Further research is needed to test the effectiveness of the DESIs.

Item Type: Article
Keywords: patient decision aids, decision support, shared decision-making, breast cancer, older patients
Schools and Departments: Brighton and Sussex Medical School > Neuroscience
Brighton and Sussex Medical School > Sussex Health Outcomes Research & Education in Cancer (SHORE-C)
Research Centres and Groups: Sussex Health Outcomes Research and Education in Cancer
Subjects: R Medicine
R Medicine > RC Internal medicine > RC0254 Neoplasms. Tumors. Oncology Including cancer and carcinogens
R Medicine > RC Internal medicine > RC0254 Neoplasms. Tumors. Oncology Including cancer and carcinogens > RC0261 Cancer and other malignant neoplasms > RC0266 Nursing
R Medicine > RC Internal medicine > RC0254 Neoplasms. Tumors. Oncology Including cancer and carcinogens > RC0280 By region, system, or organ of the body, or type of tumor, A-Z > RC0280.B8 Breast. Mammary glands
Depositing User: Helena Harder
Date Deposited: 05 Dec 2018 09:41
Last Modified: 16 Jan 2019 17:38
URI: http://srodev.sussex.ac.uk/id/eprint/80612

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Project NameSussex Project NumberFunderFunder Ref
Bridging the age gap in breast cancer. Improving outcomes for older womenG1855NATIONAL INSTITUTE FOR HEALTH RESEARCHR/127870