Information Needs of Older Women Faced with a Choice of Primary Endocrine Therapy or Surgery for Early-Stage Breast Cancer: A Literature Review

Burton, Maria; Collins, Karen; Caldon, L J M; Wyld, Lynda; Reed, Malcolm

doi:10.1007/s12609-014-0159-7

Cited by 8 publications

(5 citation statements)

References 76 publications

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“…A schematic representation of DESI development is shown in Figure 1. The prototype DESI (brief decision aid plus booklet) was initially based on literature reviews and analyses of previous patient interviews conducted by members of the group9,10,18,21,24 and was developed using an iterative process. Literature reviews of the clinical evidence and patient informational needs and preferences were conducted.…”

Section: Methodsmentioning

confidence: 99%

“…Although it has been assumed that older cancer patients have stronger preferences for taking passive roles (doctor-centered or paternalistic decision-making) in the decision-making process than younger patients,18–20 recent evidence suggests that many older cancer patients do want to be involved in treatment decisions,20 including women with breast cancer 21–24. Preferences for decision-making style vary amongst older women with breast cancer treatment decisions 22,23.…”

Section: Introductionmentioning

confidence: 99%

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

Lifford¹,

Edwards²,

Burton³

et al. 2019

PPA

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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.

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Lifford¹,

Edwards²,

Burton³

et al. 2019

PPA

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“…Questionnaire development was based on findings from a literature review, expert opinion within the research team, the input of a local patient group, and previous qualitative interviews. The questionnaire collected data on the information women “had” found helpful during their treatment DM, on information they “would ideally prefer,” its preferred format and source, and on the women's preferred and actual DM styles. There were a total of 57 questions split into 5 sections. Patient demographics (4 items). Information needs prior to treatment decision (30 items). The process of treatment DM, including the Control Preferences Scale (7 items). Optimal DM, including the Decision Regret Scale (10 items). Preferred format, media and presentation of information (9 items). …”

Section: Methodsmentioning

confidence: 99%

Information needs and decision‐making preferences of older women offered a choice between surgery and primary endocrine therapy for early breast cancer

et al. 2017

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Objectives: To establish older women's (≥75 years) information preferences regarding 2 breast cancer treatment options: surgery plus adjuvant endocrine therapy versus primary endocrine therapy. To quantify women's preferences for the mode of information presentation and decision-making (DM) style.Methods: This was a UK multicentre survey of women, ≥75 years, who had been offered a choice between PET and surgery at diagnosis of breast cancer. A questionnaire was developed including 2 validated scales of decision regret and DM preferences.Results: Questionnaires were sent to 247 women, and 101 were returned (response rate 41%). The median age of participants was 82 (range 75 to 99), with 58 having had surgery and 37 having PET. Practical details about the impact, safety, and efficacy of treatment were of most interest to participants. Of least interest were cosmetic outcomes after surgery. Information provided verbally by doctors and nurses, supported by booklets, was preferred. There was little interest in technology-based sources of information. There was equal preference for a patient-or doctor-centred DM style and lower preference for a shared DM style. The majority (74%) experienced their preferred DM style. Levels of decision regret were low (15.73, scale 0-100).Conclusions: Women strongly preferred face to face information. Written formats were also helpful but not computer-based resources. Information that was found helpful to women in the DM process was identified. The study demonstrates many women achieved their preferred DM style, with a preference for involvement, and expressed low levels of decision regret.

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“…4 One branch of this trial appraised the literature to produce 'decision support aids' to assist women in their treatment decisions; this highlighted that there was limited evidence regarding the information needs of older women with breast cancer. 10 Treatment decision-making requires consideration of the risks and benefits particularly in those with complex co-morbidity who may undergo surgery. The International Society of Geriatric Oncology (SIOG) and the European Society of Breast Cancer Specialists (EUSOMA) recently updated their joint recommendations for management of breast cancer in older women and these advocate decision-making driven by patient preferences 11 .…”

Section: Introductionmentioning

confidence: 99%

“…Similarly, the ‘Bridging the Age Gap’ trial aimed to optimise the management of older women with breast cancer in the UK 4 . One branch of this trial appraised the literature to produce ‘decision support aids’ to assist women in their treatment decisions; this highlighted that there was limited evidence regarding the information needs of older women with breast cancer 10 …”

Section: Introductionmentioning

confidence: 99%

Factors influencing older women's decision‐making related to treatment of operable breast cancer: A qualitative systematic review

Malcolm,

Howard,

Klukowska

et al. 2024

Psycho-Oncology

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ObjectiveThere is variation in practice in the treatment of older women with breast cancer. International guidelines highlight the importance of patient autonomy in treatment decision‐making. The aim of this study is to identify factors which influence decision‐making in older women with operable breast cancer, which will enable us to further understand how to support these patients.MethodsSystematic review in accordance with the PRISMA guidelines was performed to identify factors which influence treatment decision‐making in older women with operable breast cancer. Medline, Web of Science and SCOPUS were searched.ResultsThe search yielded 5840 results; 13 articles met the inclusion criteria and reported on a total of 1118 women. Thematic analysis identified three key themes in which decision‐making factors could be categorised. These were healthcare‐related factors, patient‐related factors and impact of treatment. Healthcare‐related factors included communication with clinicians and provision of information. Patient‐related factors were age, pre‐existing knowledge, preconceptions of breast cancer and treatment, decision‐making style and co‐morbidities. The impact of treatment considerations included body image and effect on quality of life. Decision‐making style was frequently reported; older women did not demonstrate one preferred style.ConclusionsThe findings have highlighted the complex interplay of factors which influence how older women make breast cancer treatment‐decisions. Clinicians should have an awareness of the factors highlighted to maximise their ability to provide support and personalised care to older women with breast cancer whilst treatment decisions are made.

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Information Needs of Older Women Faced with a Choice of Primary Endocrine Therapy or Surgery for Early-Stage Breast Cancer: A Literature Review

Cited by 8 publications

References 76 publications

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

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

Information needs and decision‐making preferences of older women offered a choice between surgery and primary endocrine therapy for early breast cancer

Factors influencing older women's decision‐making related to treatment of operable breast cancer: A qualitative systematic review

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