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

Abstract

BackgroundAround one-third of breast cancers diagnosed every year in the UK are in women aged ≥70 years. However, there are currently no decision support interventions (DESIs) 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 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.MethodsAn 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.ResultsParticipants (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 rewording sections were made. Most participants considered the DESIs helpful, but highlighted the importance of complementary discussions with clinicians.ConclusionIt 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.

Bridging the Age Gap: a prognostic model that predicts survival and aids in primary treatment decisions for older women with oestrogen receptor-positive early breast cancer

“…The prognostic model is part of a decision support intervention (DESI) including an online tool (https://agegap .shef.ac.uk/) with two other patient-facing decision aids 24 , tailored to the information needs and preferences of older women 25,26 in decision-making between surgery and primary endocrine therapy. This DESI has been developed for women whose choice between surgery and primary endocrine therapy is not clear cut.…”

Observational cohort study to determine the degree and causes of variation in the rate of surgery or primary endocrine therapy in older women with operable breast cancer

“…Shared decision-making suggests that patients should be informed of their treatment options [ 17 ] and for some older women it may be appropriate to offer PET as an alternative to ‘standard’ surgical treatment and allow the patient to decide what is best for them. Previous work by our group supports an individualised approach to treatment decision-making in this group [ 55 ] and consequently, we have recently developed, validated and trialled a decision aid to support decision making for older women facing the choice of surgery or PET [ [56] , [57] , [58] , [59] ]. This tool is available on line at https://agegap.shef.ac.uk/ .…”

Process evaluation of the Bridging the Age Gap in Breast Cancer decision support intervention cluster randomised trial.

“…The DESIs were developed to ensure that the information contained was accurate, relevant and desired by the target population and written and presented optimally for women of an older age demographic 1,20,21 .…”

“…Each DESI included an online risk prediction model 3,2,21 , a brief decision aid and an information booklet 1 . The online tools were designed to help clinicians provide personalised survival predictions for each treatment option.…”

“…Two DESIs were developed and tested [1][2][3] . In frailer (de ned as, those with decreased physiological reserve and increased vulnerability to negative health outcomes) older women (with oestrogen sensitive breast cancer), one DESI supported the decision to have either primary endocrine therapy (PET) or surgery with adjuvant therapies (standard care).…”