Curricular Reform in Serious Illness Communication and Palliative Care: Using Medical Students' Voices to Guide Change.

PURPOSE: To gather and leverage the voices of students to drive creation of required, integrated palliative care curricula within undergraduate medical education in Massachusetts, which is lacking in a majority of U.S. medical schools. METHOD: The study was conducted by the Massachusetts Medical Schools' Collaborative, a working group committed to ensuring all medical students in Massachusetts receive foundational training in serious illness communication (SIC) and palliative care. Eight focus groups (2 per participating medical school) were conducted during January-May 2021 and included a total of 50 students from Boston University Chobanian & Avedisian School of Medicine, Harvard Medical School, Tufts University School of Medicine, and the UMass Chan Medical School. Data collected from focus groups were discussed and coded. Themes were identified using the immersion/crystallization qualitative data analysis approach. RESULTS: Six key themes emerged. Students viewed SIC as essential to high-quality medical practice regardless of specialty, and believed training in SIC skills and palliative care should be required in medical school curricula. Students preferred to learn and practice these skills using frameworks, particularly in real-world situations. Students recognized the expertise of palliative care specialists and described them as a scarce, often misunderstood resource in health care. Students reported it was mostly "luck" if they were included in family meetings and observed good role models. Finally, students desired practice in debriefing after difficult and emotional situations. CONCLUSIONS: This study confirms long-standing themes on students' experiences with SIC and palliative care topics, including feeling inadequately prepared to care for seriously ill patients as future physicians. Our study collected students' perspectives as actionable data to develop recommendations for curricular change. Collaborative faculty also created recommendations based on the focus group data for immediate and ongoing SIC and palliative care curricular change in Massachusetts, which can apply to medical schools nationwide.

Content validation of observer-reported sickle cell pain diaries (SCPD-CS and SCPD-CN): results from interviews with caregivers.

BACKGROUND: Patients with sickle cell disease (SCD) experience daily pain and acute episodes known as sickle cell pain crises (SCPCs). The Sickle Cell Pain Diary-Caregiver Report (SCPD-C) is an observer-reported diary for use by caregivers of children ages < 12 years with SCD. This study reports on the content validity of the SCPD-C. METHODS: The SCPD-C was developed based on a literature review, measurement expert input, and a patient advisory board including clinicians. Three rounds of interviews (including both concept elicitation and cognitive debriefing methodologies) were conducted with caregivers of children with SCD aged < 12 to evaluate the content validity of the SCPD-C. RESULTS: Across three rounds of interviews, caregivers confirmed concepts in the SCPD-C and described observed impacts that were important and were added. Overall, caregivers evaluated the SCPD-C as easy to understand, with some minor adaptations for clarity. Additionally, the diary was split into two versions based on the child's age and school enrollment status (SCPD-CS for school-aged and SCPD-CN for non-school age children). CONCLUSIONS: Caregivers provided valuable input that led to important additions and changes to the measures. The SCPD-CS and SCPD-CN are appropriate and fit-for-purpose observer-reported outcome measures of SCPC-related pain frequency and severity, and impacts on health-related quality of life.

What matters in patient-centered medical home transformation: Whole system evaluation outcomes of the Brown Primary Care Transformation Initiative.

OBJECTIVES: Patient-centered medical home transformation initiatives for enhancing team-based, patient-centered primary care are widespread in the United States. However, there remain large gaps in our understanding of these efforts. This article reports findings from a contextual, whole system evaluation study of a transformation intervention at eight primary care teaching practice sites in Rhode Island. It provides a picture of system changes from the perspective of providers, staff, and patients in these practices. METHODS: Quantitative/qualitative evaluation methods include patient, provider, and staff surveys and qualitative interviews; practice observations; and focus groups with the intervention facilitation team. RESULTS: Patient satisfaction in the practices was high. Patients could describe observable elements of patient-centered medical home functioning, but they lacked explicit awareness of the patient-centered medical home model, and their activation decreased over time. Providers' and staff's emotional exhaustion and depersonalization increased slightly over the course of the intervention from baseline to follow-up, and personal accomplishment decreased slightly. Providers and staff expressed appreciation for the patient-centered medical home as an ideal model, variously implemented some important patient-centered medical home components, increased their understanding of patient-centered medical home as more than specific isolated parts, and recognized their evolving work roles in the medical home. However, frustration with implementation barriers and the added work burden they associated with patient-centered medical home persisted. CONCLUSION: Patient-centered medical home transformation is disruptive to practices, requiring enduring commitment of leadership and personnel at every level, yet the model continues to hold out promise for improved delivery of patient-centered primary care.

How do homeless adults change their lives after completing an intensive job-skills program? A prospective study.

Among people experiencing homelessness, difficulty securing housing is often compounded by concurrent challenges including unemployment, chronic illness, criminal justice involvement, and victimization. The Moving Ahead Program (MAP) is a vocational rehabilitation program that seeks to help adults facing these challenges to secure competitive employment. We prospectively studied how MAP graduates (N = 97) changed from the beginning of MAP to about six months after graduation. We observed a variety of positive outcomes not just in employment and housing but also in health, substance use, and criminal justice involvement. However, these gains were not universal; for instance, participants were less likely to report positive outcomes at follow-up if they started MAP with a serious mental illness, made relatively small gains in work skills, or did not seek mental health treatment during the six months after they completed MAP. These findings might encourage program staff to devote additional resources toward supporting at-risk students.

Patient Engagement for Youth in Multiple Facets of Healthcare in Rhode Island.

Health reform strives to be patient-centered but often emphasizes institutional and financial well-being at the expense of patient responsiveness. Rhode Island is a pioneer, with innovative youth engagement programs in health care. The Youth Advisory Board of the Adolescent Patient-Centered Medical Home (PCMH) Initiative at Brown Family Medicine has brought together adolescents to gather feedback about participants' preferences for their health care and bring that feedback to health care providers. The Adolescent Leadership Council (TALC) of Hasbro Children's Hospital is comprised of adolescents with chronic medical illnesses and serves as an advisory group. The Rhode Island Department of Health's Office of Special Needs offers Dare to Dream, a youth leadership development program, a youth advisory council and a healthy lifestyles program. These youth engagement programs allow youth to help shape the health care system to meet their needs and contribute to youth empowerment in the state. [Full article available at http://rimed.org/rimedicaljournal-2016-08.asp, free with no login].