2018 CBSSM Colloquium Abstracts
Supporting information for: 2018 CBSSM Research Colloquium and Bishop Lecture (Barbara Koenig, PhD)
Parent Perceptions of Antenatal Consultation for Extreme Prematurity
Presenter: Stephanie Kukora, MD
Co-authors: Naomi Laventhal, MD, MA; Haresh Kirpilani, MD; Ursula Guillen, MD
Antenatal consultation (AC) for extreme prematurity is routine in neonatology practice, but questions remain about how best to meet the needs of expectant parents. Decision-aids have demonstrated improvement in communication of statistical outcomes, but whether they are uniformly helpful in AC, and whether provision of outcome data is essential to shared decision-making in the AC encounter remains uncertain.
To characterize the experience of parents threatened with extreme prematurity between 22 and 25 weeks gestation who received AC, identify aspects that parents perceived as favorable or unfavorable, and identify areas for improvement.
We analyzed free text responses of expectant parents enrolled in a multi-center randomized trial evaluating the use of a validated decision-aid (DA) compared to standard counseling. Qualitative thematic analysis of responses identified items valued for decision-making about delivery room resuscitation.
201 parents were enrolled; 126 provided substantive free-text comments. 45 (36%) parents described their counseling experience positively. 31 (25%) reported a negative experience, and 23 (18%) offered suggestions for improvement. Desire for a tailored approach was a major theme reported by many parents, with subthemes of too much or too little information, facts vs values-based counseling, and diverse learning styles. Another major theme was shared decision-making. Subthemes included: good or poor understanding of the decision/options; trust; parent engagement, feeling supported in decision-making. Need for clinician sensitivity also emerged as a major theme, with subthemes of hope, thoughtful timing of AC, and identification and support of parents’ stress and emotions. 31 parents receiving AC with the DA (n=102) commented that visual depiction of the statistical information helpful.
Many parents expressed that factual information about outcomes was influential to their decisions, but some parents dislike this approach. In addition to tailoring how and what information is communicated during AC, clinicians should be sensitive to parents’ individual needs in this context.
Hospice Care Quality in U.S. Nursing Homes Reported by Patients and Caregivers in Yelp Reviews
Presenter: Chithra Perumalswami, MD, MSc
Co-authors: Jayme Laurencelle, MD; Shawna O’Reilly, MD; Jennifer Griggs, MD, MPH; Raina Merchant, MD, MSHP
Background: The need to assess the quality of hospice care provided in nursing homes is a national priority. Patients and caregivers often utilize online forums such as Yelp to informally report on the experience of their healthcare episodes. These narratives are a unique data source and may provide valuable insights into the quality of care provided in U.S. nursing homes at the end of life.
Objective: To explore the content of Yelp reviews of nursing homes providing care at the end of life, specifically utilizing quality measures for palliative and hospice care determined by the National Quality Forum (NQF).
Methods: We performed a qualitative content analysis of 3421 Yelp reviews. The reviews were double coded and the final coding scheme incorporated concepts from all of the NQF domains. Larger themes were determined by consensus.
Results: Four themes were identified: 1) staff interpersonal expertise (empathic characteristics and effective communication), 2) staff technical competence (expertise in skills, staff attention, and efficiency of response), 3) systems issues (physical facility characteristics and cleanliness), and 4) patient wellbeing (physical and emotional wellbeing, family trust and confidence in care).
Conclusion: Yelp reviews of nursing homes providing hospice identify concepts that are mostly congruent with the current NQF domains. Medicare uses the NQF domains and preferred practices in the Hospice Quality Reporting Program (HQRP) to measure and report on quality. Utilizing Yelp reviews may help to identify additional quality measures, including a more nuanced view of aspects of quality of care in nursing homes at the end of life. Future research should focus on how to make such unprompted narratives more accessible and on how to incorporate additionally identified concepts regarding quality into the HQRP.
Impact of MCI on Patient and Care Partner Preferences and Physician Decision Making for Cardiovascular Treatment
Presenters: Bailey Reale, MPH; Emilie Blair
Co-authors: Darin Zahuranec, MD, MS; Kenneth Langa, PhD; Jane Forman, ScD, MHS; Bruno Giordani, PhD; Brenda Plassman, PhD; Kathleen Welsh-Bohmer, PhD; Colleen Kollman, MBA; Deborah Levine, MD, MPH
Background: The leading cause of death for the 5.4 million older adults with mild cognitive impairment (MCI) in the US is cardiovascular disease (CVD). Despite this, patients with pre-existing MCI may receive fewer treatments for CVD events such compared to cognitively normal patients. We conducted interviews of patients, care partners, and physicians to understand how MCI influences decision making for CVD treatments.
Methods: Qualitative study based on in-depth, semi-structured, in-person interviews with patient-care partner dyads (n=23) and physicians (n=18) using a standard guide. We used qualitative content analysis to identify unifying and recurrent themes. We gathered reflections on data suggesting neurologists recommend fewer treatments for stroke to older adults with MCI and elicited how MCI influences patient-care partner preferences for 5 common CVD treatments. We also sought to understand how a patient’s having MCI influenced physicians’ decisions to recommend these 5 CVD treatments.
Results: Most MCI patients, cognitively normal patients, and their care partners wanted all 5 stroke treatments (Table 1). Participants reported several factors affecting their decision-making for treatment (Table 1). Some participants thought that physicians might recommend fewer stroke treatments to patients with pre-existing MCI because physicians have biases about MCI patients (Table 1).
Most physicians described MCI as influencing their recommendations for CVD treatments in at least one of five ways (Table 2). Physicians reported recommending CVD treatments less to MCI patients due to their assumptions about the MCI patients and MCI itself (Table 2).
Conclusions: MCI patients have similar preferences for treatments for CVD events as do cognitively normal patients, yet physicians often recommend these treatments less often to MCI patients. We need to better understand how physician recommendations contribute to potential underuse of effective CVD treatments in MCI patients in order to improve the quality of CVD care for this large and growing population.
It’s all about Context: A Mixed-Methods Study of Institutional Review Board’s Local Context Assessment
Presenter: Adrianne Haggins, MD
Co-authors: Deneil Harney; Sacha Montas, MD, JD; Joy Black, BSN, MS; Neil Dickert, MD, PhD; Timothy Guetterman, PhD; Michael Fetters, MD; Robert Silbergleit, MD
Background: Local context assessment ostensibly allows review boards to closely consider the potential impact to study populations, the institution, and local laws and regulations. Given the trend toward utilization of central review boards for multicenter trials, a better understanding of single institution review board assessment processes are needed.
Objective: To explore how local context assessments in multicenter trials are made by single institution review boards.
Methods: We used a mixed methods approach to explore attitudes and perceptions of key stakeholders. We elicited stakeholder perspectives by observing, and audiotaping IRB deliberations of trials conducted under exception from informed consent (EFIC). In-depth semi-structured interviews (n=26) and an online survey (n=80, response rate=13%) were conducted of IRB stakeholders (IRB members, central review board members, regulatory officials, etc.). Two authors independently reviewed the observations and interview transcripts to identify meaningful statements, which were grouped into codes and broader themes. Descriptive statistics were performed on the survey results.
Results: Deliberations related to local context highlighted the importance of taking into consideration: scientific rigor, community consultation and public disclosure process, as well as local laws/regulations, weighing relative benefit vs. risk, medical standards/practices, concerns of local groups, prior experiences with investigators and within the institution. Themes from interviews underscored the important role investigators, and IRB community members are expected to play in knowing the local population and community. Top reasons for considering local context included: knowing about community concerns, showing respect for local public, and the influence of local laws/ordinances on clinical care.
Conclusion: Local context assessment provides a mechanism to ensure research and investigators are perceptive to the concerns and impact on the broader community. A wide variety of factors are considered. To further inform central review processes, future research is needed to differentiate which factors are essential for a high-quality local context assessment.
Does Enhancing Individual Choice and Control Promote Freedom? Challenges in Contemporary Bioethics
Bishop Lecture Keynote Presenter: Barbara Koenig, PhD
Over the past three decades, the discipline of bioethics has advocated for enhanced patient choice and control over a range of medical decisions, from care near the end of life to participation in clinical research. Using two current policy challenges in California—1) the advent of legally sanctioned medical aid in dying and, 2) efforts to share UC Health “big data” from the electronic health record in research with private sector partners—Professor Koenig will explore how current bioethics practices may unintentionally and ironically impede our shared goals of promoting human freedom.