Strengths, Gaps, and Opportunities: Results of a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources.

CONTEXT: Pediatric palliative care (PPC) can improve quality of life of children with life-threatening conditions and their families. However, PPC resources vary by state and within a state, and PPC resources and personnel are often inequitably distributed toward urban areas with major hospital systems. A community needs assessment (CNA) that evaluates the current status of PPC and pediatric hospice care can help identify gaps and opportunities to improve PPC access. OBJECTIVES: A CNA was performed in the state of Georgia to explore the scope and gaps of PPC and hospice services and plan for what is needed to grow PPC and hospice services. METHODS: The CNA used a mixed-methods approach, including a community profile, literature search, windshield survey, key informant interviews, and a quantitative online survey. The methodology is outlined in a companion article, entitled "A methodological approach to conducting a statewide community needs assessment of pediatric palliative care and hospice resources." RESULTS: Four key themes were identified from synthesis of primary and secondary data collection: defining and providing PPC, the environment for PPC in Georgia, coordination and collaboration, and the future of PPC in Georgia. Recommendations to improve PPC services in Georgia were categorized by feasibility and importance. High feasibility and high importance recommendations included expanding PPC education for both providers and patients and creating a formal network or coalition of PPC providers and allies who can work collaboratively at multiple care levels across Georgia in expanding PPC services. CONCLUSION: In Georgia, this assessment provides the foundation for next steps in coordinated efforts between hospital-based clinicians, state hospice and palliative care organizations, and state policy makers to ultimately expand PPC care available to children and families.

A Methodologic Approach to Conducting a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources.

CONTEXT: Prior studies have indicated that pediatric palliative care (PPC) resources vary across states and within regions in a state. Evaluating the current status of PPC and pediatric hospice care through a community needs assessment (CNA) can help address the gaps that exist to improve and increase access to PPC for children in need. OBJECTIVES: Using the state of Georgia as an example, the process, methods, lessons learned, and limitations in conducting a statewide PPC CNA are described. METHODS: A mixed-method descriptive design with multiple stages incorporating different methodological approaches was used. These included literature review, community profile, survey and interview questionnaire development, windshield survey, identifying and interviewing key informants, and quantitative survey of the state's hospice organizations. Key themes (providing PPC, PPC environment, collaboration, and future of PPC) and subthemes emerged, which were then triangulated across all existing data collection techniques to provide recommendations of varying feasibility and importance. RESULTS: Described in a subsequent article (Johnson K.A. et al.). CONCLUSION: This approach can be used by other state organizations, coalitions, governments, or national organizations looking to perform a CNA of palliative care, hospice resources, or could be applied to other geographical settings or types of care.

Simulation-Based Palliative Care Communication for Pediatric Critical Care Fellows.

BACKGROUND: Pediatric palliative care (PPC) education is lacking in pediatric critical care medicine (PCCM) fellowships, despite the desire of many program directors and fellows to expand difficult conversation training. Simulation-based training is an experiential method for practicing challenging communication skills such as breaking bad news, disclosing medical errors, navigating goals of care, and supporting medical decision-making. METHODS: We describe a simulation-based PPC communication series for PCCM fellows, including presimulation session, simulation session, debriefing, and evaluation methods. From 2011 to 2017, 28 PCCM fellows participated in a biannual half-day simulation session. Each session included 3 scenarios (allowing for participation in up to 18 scenarios over 3 years). Standardized patients portrayed the child's mother. PCCM and interprofessional PPC faculty cofacilitated, evaluated, and debriefed the fellows after each scenario. Fellows were evaluated in 4 communication categories (general skills, breaking bad news, goals of care, and resuscitation) using a 3-point scale. A retrospective descriptive analysis was conducted. RESULTS: One hundred sixteen evaluations were completed for 18 PCCM fellows. Median scores for general communication items, breaking bad news, and goals of care ranged from 2.0 to 3.0 (interquartile range [IQR]: 0-1) with scores for resuscitation lower at 1.0 (IQR: 1.5-2). DISCUSSION: This experiential simulation-based PPC communication curriculum taught PCCM fellows valuable palliative communication techniques although revealed growth opportunities within more complex communication tasks. The preparation, methods, and lessons learned for an effective palliative simulation curriculum can be expanded upon by other pediatric training programs, and a more rigorous research program should be added to educational series.

Primary care physicians' perspectives on respiratory syncytial virus (RSV) disease in adults and a potential RSV vaccine for adults.

BACKGROUND: Deaths attributable to respiratory syncytial virus (RSV) among adults are estimated to exceed 11,000 annually, and annual adult hospitalizations for influenza and RSV may be comparable. RSV vaccines for older adults are in development. We assessed the following among primary care physicians (PCPs) who treat adults: (1) perception of RSV disease burden; (2) current RSV testing practices; and (3) anticipated barriers to adoption of an RSV vaccine. METHODS: We administered an Internet and mail survey from February to March 2017 to national networks of 930 PCPs. RESULTS: The response rate was 67% (620/930). Forty-nine percent of respondents (n = 303) were excluded from analysis as they reported never or rarely caring for an adult patient with possible RSV in the past year. Among respondents who reported taking care of RSV patients (n = 317), 73% and 57% responded that in patients ≥ 50 years, influenza is generally more severe than RSV and that they rarely consider RSV as a potential pathogen, respectively. Most (61%) agreed that they do not test for RSV because there is no treatment. The most commonly reported anticipated barriers to a RSV vaccine were potential out-of-pocket expenses for patients if the vaccine is not covered by insurance (93%) and lack of reimbursement for vaccination (74%). CONCLUSIONS: Physicians reported little experience with RSV disease in adults. They are generally not testing for it and the majority believe that influenza disease is more severe. Physicians will require more information about RSV disease burden in adults and the potential need for a vaccine in their adult patients.

Assessment and Validation of Syndromic Case Definitions for Respiratory Syncytial Virus Testing in a Low Resource Population.

Standardized case definitions are needed in decision-making regarding respiratory syncytial virus control strategies, including vaccine evaluation. A syndromic case definition comprising of "wheeze or apnea or cyanosis" could be useful for community-based surveillance of moderate respiratory syncytial virus infection among young infants particularly in resource-limited settings. However, this definition showed modest specificity (29.2%-49.6%), indicating that community-based surveillance may need augmentation with other data.