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Catherine Auriemma Presents at 2023 Society for Medical Decision Making Annual North American Meeting

Philadelphia, PA October 23, 2023

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Featured PAIR Center Researchers


A Modified Delphi Study to Develop Quality-Weighted Hospital-Free Days as an Acute Respiratory Failure Outcome Measure

PURPOSE: Efforts to improve long-term outcomes for acute respiratory failure (ARF) and critical care are hindered by the absence of a survivorship endpoint that is patient-centered, practical to measure in large cohorts, and appropriate for assessing interventions with either palliative or restorative intents. We sought to develop an optimal approach to quality-weight hospital-free days using patient- or caregiver-reported data to create a novel, patient-centered outcome for future studies.

METHODS: We convened a Delphi panel of experts with lived or professional experience in ARF. Lived experience experts included ARF survivors and survivors’ family members. Professional experience experts included clinicians and researchers. Hospital-free days (HFDs) was defined as the number of days spent alive and outside the hospital. Through serial Delphi rounds, panelists rated survivorship domains, instruments, modalities for completion, optimal frequency of assessment, and methods to translate patient and caregiver responses into quality weightings of HFDs. Consensus threshold was set as at least 70% of respondents rating an item as “Totally Acceptable or Acceptable” (i.e., score >6 on a 7-point Likert scale) and less than or equal to 15% of respondents rating the measure as “Totally Unacceptable”, “Unacceptable”, or “Slightly Unacceptable” (i.e. score of <3). Open-ended explanations were analyzed using qualitative content analysis.

RESULTS: Fifty-seven experts participated in Round 1 (56% lived, 51% professional). Response rates were 93%, 89%, and 82% in Rounds 2,3, and 4, respectively. The most important survivorship domains were physical function and health-related quality of life. Participants felt data collection during ARF recovery should begin immediately following intensive care unit discharge (including in hospital), take no more than 15 minutes per assessment, allow for surrogate completion when patients are unable to complete independently, and continue for at least 24 months of follow-up. Based on responses from Delphi Rounds 1 and 2, the EuroQual-5 Dimensions (EQ-5D) was selected as the optimal patient-reported outcome measure to quality-weight HFDs. This method met consensus criteria for acceptability in Round 3. Panelists preferred quality-weighted HFDs to mortality and unweighted HFDs for use in future ARF studies. Key themes are presented in the Table.

CONCLUSIONS: Quality-weighting HFDs using patient and/or surrogate responses to the EQ-5D captured patient, family, clinician, and researcher priorities and was acceptable to this stakeholder panel. Future studies ought to operationalize and validate this approach.

What Choice Do We Have?’: Aging in Place and Shared Decision Making in Dementia

PURPOSE: “Aging in place” (AIP), the ability to remain in one’s home with age, is frequently viewed as both an intervention for persons with dementia (PWD) and as a desirable outcome. However, AIP is not always associated with sustained quality of life for patients and caregivers. We explored factors influencing shared decision making to AIP versus seek a higher level of residential care.

METHODS: We conducted semi-structured interviews with PWD, family caregivers, and dementia clinicians. Participants were purposively sampled for representation of dementia severity, demographic characteristics, and professional expertise. Transcripts were analyzed using qualitative content analysis with constant comparison. Sample size was determined by thematic saturation within each sub-group.

RESULTS: We conducted 74 interviews among 14 PWD, 36 caregivers, and 24 clinicians. Preferences to AIP were driven by two primary factors: (1) a general sense that the “best care” occurs in familiar environments and in proximity to or delivered by loved ones, and (2) distrust of most care facilities. The majority of participants preferred to avoid planning or making decisions to seek a higher level of care until deemed “absolutely necessary”. As a result, many participants described a reactive decision making process, with transitions of care triggered by a “breaking point”, often related to safety, physical dependency, or caregiver burnout; were not felt to a be choice; and often accompanied by high levels of caregiver guilt. In the minority of participants who described a proactive choice and decision self-efficacy, two criteria were nearly always met: (1) participants had “insider knowledge”, frequently in the form of prior experience witnessing challenges of caring for a person with advanced dementia in the home; and (2) participants were financially well-resourced such that they could to seek major home adaptations or avoid “lower quality” institutions. Nearly all participants worried about financial burdens of care, whether occurring in the home or a care facility.

CONCLUSION: Decisions regarding care setting for PWD frequently do not feel like a choice and are made in imperfect conditions. Programs seeking to enhance AIP or use ability to AIP as an outcome should take these factors into account. Interventions are needed to promote more informed decision making for care setting in dementia and improve financial support across care settings.