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Table 1 Outcomes and measures

From: Supporting breast cancer screening decisions for caregivers of older women with dementia: study protocol for a randomized controlled trial

Outcomes Outcome measures Description Scoring When Source
Primary outcome Decisional conflict 16-items on a 1–5-point Likert scale. Measures uncertainty around a decision, whether they feels informed, clear about their personal values, and supported in their decision-making [55] Scores range 0–100; lower scores indicate less conflict Baseline, follow-up Caregiver reported
Secondary outcomes Decision-making self-efficacy 11 items on a 5-point Likert scale. Measures of self-confidence or belief in their ability to make decisions [62] Scores range 0–100; higher scores indicate more self-efficacy Baseline, follow-up Caregiver reported
Intention to be screened Three items. Two items assess propensity to get person with ADRD screened. One item asks how many more mammograms they think the patient will get Yes vs. those who are unsure or plan not to be screened Baseline, follow-up Caregiver reported; patient reported
Receipt of screening Discussion with caregiver Yes vs. no 15-month follow-up Caregiver reported
Review primary-care notes, radiology reports, and documentation on screening and preventive care; caregiver report. Yes vs. no 15- and 24-month follow-ups Patient EMR
Knowledge 16-items (6 multiple choice and 10 true/false) [48] Sum of correct answers Baseline, follow-up Caregiver reported
Burden of screening on patient Review patient’s EMR for additional diagnostic procedures due to false-positive results, identification of an abnormality on screening exam but further work-up declined, identification of a clinically unimportant cancer; documentation of depressive symptoms, anxiety, or pain related to the screening experience Yes or no 15- and 24-month follow-ups Patient EMR
Burden of screening on caregiver Measure perceptions about the burden of the mammography for the patient; semi-structured questions about patient’s mammogram experience and perceived burden of screening Descriptive 15-month follow-up Caregiver reported; patient reported
Role in decision-making Assesses preferences for and involvement in making decisions on their own or sharing responsibility with their family or doctor [71] Active vs. passive/shared with doctor (since aim of decision aids is to help dyads be more active in decision-making) Follow-up Caregiver reported; patient reported
  Acceptability of the materials Assess caregivers’ and patients’ perceptions about the length, clarity, and helpfulness of the decision aid and their willingness to recommend it. The number of times they reviewed it, how many pages they read, how long it took them to read it, how they would prefer to receive it if not part of a study Descriptive Follow-up Caregiver reported; patient reported