Experiences of treatment decision-making among older newly diagnosed adults with acute myeloid leukemia: a qualitative descriptive study.

PURPOSE: Treatment decision-making for older adults with acute myeloid leukemia (AML) is complex and preference-sensitive. We sought to understand the patient experience of treatment decision-making to identify specific challenges in shared decision-making to improve clinical care and to inform the development of directed interventions. METHODS: We conducted in-depth interviews with newly diagnosed older (≥ 60 years) adults with AML and their caregivers following a semi-structured interview guide at a public safety net academic hospital. Interviews were digitally recorded, and qualitative thematic analysis was employed to synthesize findings. RESULTS: Eighteen in-depth interviews were conducted. Age ranged from 62 to 78 years. Patients received intermediate- (50%) or high-intensity (44%) chemotherapy or best supportive care only (6%). Six themes of patient experiences emerged from the analysis: patients (1) felt overwhelmed and in shock at diagnosis, (2) felt powerless to make decisions, (3) felt rushed and unprepared to make a treatment decision, (4) desired to follow oncologist recommendations for treatment, (5) balanced multiple competing factors during treatment decision-making, and (6) desired for ongoing engagement into their care planning. Patients reported many treatment outcomes that were important in treatment decision-making. CONCLUSIONS: Older adults with newly diagnosed AML feel devastated and in shock at their diagnosis which appears to contribute to a feeling of being overwhelmed, unprepared, and rushed into treatment decisions. Because no one factor dominated treatment decision-making for all patients, the use of strategies to elicit individual patient preferences is critical to inform treatment decisions. Interventions are needed to reduce distress and increase a sense of participation in treatment decision-making.

Codesign approaches involving older adults in the development of electronic healthcare tools: a systematic review.

OBJECTIVE: The primary aim was to review and synthesise the current evidence of how older adults are involved in codesign approaches to develop electronic healthcare tools (EHTs). The secondary aim was to identify how the codesign approaches used mutual learning techniques to benefit older adult participants. DESIGN: Systematic review following the Preferred Reporting Items for Systematic Reviews 2020 checklist. DATA SOURCES: PubMed, Embase and Scopus databases were searched for studies from January 2010 to March 2021. ELIGIBILITY CRITERIA: Inclusion criteria were studies employing codesign approaches to develop an EHTs, and the study population was aged 60 years and older. DATA EXTRACTION AND SYNTHESIS: Data were extracted for analysis and risk of bias. We evaluated the quality of studies using the Agency for Healthcare Research and Quality Evidence-based Practice Center approach. RESULTS: Twenty-five studies met the inclusion criteria for this review. All studies used at least two involvement processes, with interviews and prototypes used most frequently. Through cross-classification, we found an increased utilisation of functional prototypes in studies reaching the 'empower' level of participation and found that studies which benefitted from mutual learning had a higher utilisation of specific involvement processes such as focus groups and functional prototyping. CONCLUSIONS: We found gaps to support which involvement processes, participation levels and learning models should be employed when codesigning with older adults. This is important because higher levels of participation may increase the user's knowledge of technology, enhance learning and empower participants. To ensure studies optimise participation and learning of older adults when developing EHTs, there is a need to place more emphasis on the approaches promoting mutual learning. PROSPERO REGISTRATION NUMBER: CRD42021240013.