Care Coordination Services Research Articles

Perspectives of Families with Seriously ill Children and Adolescents in Lower Saxony: Focus on Care and Support - An Analysis of the Current Situation and Possible Support Services

The care of children and adolescents in need of care at home is exacerbated by the shortage of skilled workers in the care sector, which leads to bottlenecks in care and presents caring families with major challenges. The implementation of new care approaches in existing structures in the healthcare system is proving to be a key development task in order to provide targeted support for affected families in the future. Qualitative explorative interview study to record the perspective of families with (seriously) ill children and adolescents on the current care situation and possible helpful support services. The sampling was criteria-driven and the analysis and evaluation was content-analytical. Respondents were given a short questionnaire to record socio-demographic characteristics. In particular, the transmission of the diagnosis, the everyday challenges and the impact on quality of life were named as stress factors by n=10 participating parents. Improved access to information, voluntary structures and central contact points as well as digital services were named as key development needs. The interviews from real life and needs-oriented perspective show that there is a need to expand low-threshold care coordination services, strengthen voluntary structures and use telemedical services. Meeting these needs should enable access to specialized treatment and helpful services, especially in rural areas.

Program Implementation Strategies Associated With Reduced Acute Care Utilization for Medicaid Beneficiaries in California's Whole Person Care Pilot Program.

Public health care policymakers and payers are increasingly investing in efforts to address patients' health-related social needs (HRSNs) as a strategy for improving health while controlling or reducing costs. However, evidence regarding the implementation and impact of HRSN interventions remains limited. California's Whole Person Care Pilot program (WPC) was a Medicaid Section 1115 waiver demonstration program focused on the provision of care coordination and other services to address eligible beneficiaries' HRSN. In this study, we examine pilot-level variation in impact on acute care utilization and identify factors associated with differential outcomes. The majority of pilots reduced emergency department (ED) visits for enrollees relative to matched controls; however, only four pilots reduced both ED visits and hospitalizations. Coincidence analysis results highlight the importance of cross-sector partnerships, field-based outreach and engagement, and adequate program investment in differentiating pilots that reduced acute care utilization from those that did not.

Impact of Referring High-Risk Patients to Intensive Outpatient Primary Care Services: A Propensity Score-Matched Analysis.

Many healthcare systems have implemented intensive outpatient primary care programs with the hopes of reducing healthcare costs. The Veterans Health Administration (VHA) piloted primary care intensive management (PIM) for patients at high risk for hospitalization or death, or "high-risk." We evaluated whether a referral model would decrease high-risk patient costs. Retrospective cohort study using a quasi-experimental design comparing 456 high-risk patients referred to PIM from October 2017 to September 2018 to 415 high-risk patients matched on propensity score. Veterans in the top 10th percentile of risk for 90-day hospitalization or death and recent hospitalization or emergency department (ED) visit. PIM consisted of interdisciplinary teams that performed comprehensive assessments, intensive case management, and care coordination services. Change in VHA and non-VHA outpatient utilization, inpatient admissions, and costs 12months pre- and post-index date. Of the 456 patients referred to PIM, 301 (66%) enrolled. High-risk patients referred to PIM had a marginal reduction in ED visits (- 0.7; [95% CI - 1.50 to 0.08]; p = 0.08) compared to propensity-matched high-risk patients; overall outpatient costs were similar. High-risk patients referred to PIM had similar number of medical/surgical hospitalizations (- 0.2; [95% CI, - 0.6 to 0.16]; p = 0.2), significant increases in length of stay (6.36; [CI, - 0.01 to 12.72]; p = 0.05), and higher inpatient costs ($22,628, [CI, $3587 to $41,669]; p = 0.02) than those not referred to PIM. VHA intensive outpatient primary care was associated with higher costs. Referral to intensive case management programs targets the most complex patients and may lead to increased utilization and costs, particularly in an integrated healthcare setting with robust patient-centered medical homes. PIM 2.0: Patient Aligned Care Team (PACT) Intensive Management (PIM) Project (PIM2). NCT04521816. https://clinicaltrials.gov/study/NCT04521816.

Jenna's Project: Preventing Overdose and Improving Recovery Outcomes for Women Leaving Incarcerated Settings During Pregnancy and Postpartum Periods.

For people with opioid use disorder (OUD), transitioning from pregnancy to postpartum and from incarceration to the community is a time of increased risk for opioid overdose. This prospective project evaluated the extent of Jenna's Project's success in preventing overdoses and improving recovery outcomes by coordinating postrelease care in incarcerated OUD perinatal patients. Participants (N = 132) were pregnant or postpartum (1 year postdelivery) with OUD during incarceration and self-referred for postrelease services. From March 2020 to October 2021, participants could receive up to 6 months of postincarceration care coordination services (eg, regular communication, transportation, emergency housing, SUD treatment), medication to treat OUD (MOUD) and other treatment services. Outcomes included verified overdose (fatal), self-reported nonfatal overdose, reincarceration, active Medicaid, receipt of MOUD, presence of children living with participants, open Child Protective Services cases, and number of referrals for services. There were 0 nonfatal and 0 fatal overdoses at both 1 and 6 months postrelease, and 3 of 132 (2%) returned to incarceration. Significantly fewer participants had Medicaid at release (36%) and at 6 months postrelease (60%) than before incarceration (87%) ( P < 0.001 for all 3 pairwise comparisons). At 6 months postrelease, significantly more participants reported MOUD receipt (51%) compared with before incarceration (39%) ( P < 0.001). There was no significant change in the number of open Child Protective Services cases. Referrals for childcare or parenting services were the most common referrals provided. Immediate postrelease care coordination for pregnant and postpartum women with OUD was feasible and effective in preventing overdose, reincarceration, and promoting recovery outcomes.

Optimale Versorgung am Lebensende aus der Angehörigenperspektive – eine qualitative Interviewstudie in zwei niedersächsischen Landkreisen

BackgroundEstablished as health insurance benefit in 2007, Specialized Palliative Home Care (SPHC) has been continuously expanded. At the same time, health policy initiatives intended to promote general outpatient palliative care. In comparison to urban centers, the development of palliative care networks in rural areas appears to be more difficult. In addition, there is an increasing shortage of family doctors in primary care. Family members play a key role in the home care for seriously ill patients. This paper therefore investigated the experiences of relatives with the end-of-life (EoL) care for family members with life-limiting chronic diseases in more rural regions. The aim was to determine aspects that, from the relatives’ point of view, are essential for optimizing EoL care. MethodsQualitative after-death interviews with relatives in two districts were conducted in the first six months of 2019, who were recruited by the deceased patients’ family doctor. Relatives (age ≥18 years) of patients who died in 2018 were included. The interviews were digitally recorded, transcribed and analyzed using content analysis. ResultsIn the first half of 2019, 28 after-death interviews were conducted with 30 relatives (77% female, age: 32 to 83 years) from rural (n=8) and urban communities (n=22) in two Lower Saxonian counties. They were mostly in a partnership or parent-child relationship with the deceased person.The central categories and needs that emerged in the analysis were: (1) communication about dying and death, (2) information and enabling, (3) support of and relief for relatives, and (4) continuity and cooperation of the services involved in EoL care. The results underline the fact that family caregivers in particular find open communication, information to provide them with the confidence to act, recognizing and responding to support needs and continuity in the course helpful in coping with EoL care situations. Access problems to specialist medical care, deficiencies in care coordination and bureaucratic hurdles in the provision of medical aids proved to be an additional burden. DiscussionThe results underline the importance of open communication and the integration of relatives into the care process for optimal care at the end of life. Close cooperation between the services involved and proactive support for relatives are essential, too, especially in rural areas where the challenges of accessing and coordinating care services are a major concern. ConclusionThe identification and communication of complex problems, the needs of patients and their relatives and possible barriers to accessing care services are prerequisites for the timely initiation of palliative care measures and support for family caregivers. In addition to needs-based care structures, the optimization of EoL care in home settings requires cooperation and networking between professional stakeholders.

Association of patient-reported experience of care with cancer clinical trial participation.

11117 Background: Few individuals diagnosed with cancer participate in clinical trials. Patient-reported experience of care (PEC), assessing patients’ perspectives on interactions with healthcare providers and systems, is important in evaluating quality of care. To help identify patient-centered strategies that may enhance trial enrollment, we examined whether PEC may predict enrollment in clinical trials. Methods: This study utilized Surveillance, Epidemiology, and End Results-Consumer Assessment of Healthcare Providers and Systems (SEER-CAHPS) linked data, including SEER registry data, CAHPS PEC surveys, and Medicare claims. Individuals in SEER-CAHPS who were diagnosed with lung cancer 2000-2018 and completed a CAHPS survey ≥6 months following diagnosis were included. The study outcome, clinical trial enrollment after cancer diagnosis, was determined using Medicare claims; among individuals who enrolled in clinical trials, only those completing a CAHPS survey before trial enrollment were included. PEC was assessed using 5 global ratings (Overall Care, Personal Doctor, Specialist, Health Plan, and Prescription Drug Plan) and 6 composite measures (Doctor Communications, Getting Needed Care, Getting Care Quickly, Getting Needed Drugs, Care Coordination, and Customer Service); all were scored 0 (worse PEC) to 10 (best PEC). Associations of trial participation and PEC were assessed using multivariable logistic regression, controlling for age, race/ethnicity, dual Medicaid status, fee-for-service vs Medicare Advantage plan at diagnosis, and physical problems limiting activities, and were weighted to correspond to the overall SEER population. Results: The study included 5,361 individuals diagnosed with lung cancer; 4.8% of the weighted population enrolled in a clinical trial. Patients with higher PEC ratings for their Specialist (odds ratio [OR] for a 1-point higher PEC score 0.86, 95% CI 0.76, 0.98); for their Health Plan (OR 0.87, 95% CI 0.80, 0.96); and for Getting Needed Care (OR 0.89, 95% CI 0.81, 0.98) had significantly (p&lt;0.05) lower oddsof having enrolled in a clinical trial. Among individuals without physical limitations, association of PEC and trial enrollment were similar. Among individuals with physical limitations, higher PEC ratings for Getting Care Quickly were associated with higher odds (OR 1.20, 95% CI 1.03, 1.39) of having enrolled in a trial. Conclusions: In this population, reporting worse PEC in certain domains was significantly associated with increased clinical trial enrollment. This suggests patients less happy with their clinical care may be more likely to enroll in trials, perhaps to receive different types of care and/or from different providers. PEC associations with trial enrollment differ between patients with vs without physical limitations, suggesting different strategies may be effective for increasing trial enrollment among these two sub-groups.

Immunization adherence among children with sickle cell disease and sickle cell trait: Results of a population-based study.

Despite the importance of timely vaccine completion for protection from infectious disease, there is limited knowledge of the immunization adherence rates of children with sickle cell disease (SCD). This is a retrospective cohort study comparing the immunization rates of children with SCD to those with sickle cell trait between 2008 and 2019 in Georgia. Completion rates for each vaccine and the proportion of children with up-to-date status at 24 and 35 months were calculated and compared between the cohorts. Chi-square tests with odds ratios (OR) for differences and 95% confidence intervals (CIs) were reported on the overall up-to-date rates and rates for individual vaccines at 24 and 35 months for the two cohorts. Children with SCD had higher up-to-date rates than children with sickle cell trait at 24 and 35 months. At 35 months, the overall up-to-date rates (OR=1.17; 95% CI, 1.04-1.31; p=.004) and the four-dose pneumococcal conjugate vaccine series (OR=1.36; 95% CI, 1.18-1.57; p<.001) were significantly different between the groups. Both cohorts had the highest completion rates for the hepatitis B series and the lowest rates for the varicella vaccine. Doses of diphtheria, tetanus, and acellular pertussis vaccine; varicella; and pneumococcal conjugate vaccines were most commonly missed by children in both cohorts. Children with SCD have better immunization coverage than children with sickle cell trait, but there is an opportunity for improvement. Policymakers and healthcare professionals should focus on increasing access to care coordination services among children with SCD to ensure on-time and preventive healthcare services.

Perspectives from persons living with dementia and their caregivers on emergency department visits, care transitions, and outpatient follow-up: A qualitative study.

Persons living with dementia (PLWD) experience frequent and costly emergency department (ED) visits, with poor outcomes attributed to suboptimal care and postdischarge care transitions. Yet, patient-centered data on ED care experiences and postdischarge needs are lacking. The objective of this study was to examine the facilitators and barriers to successful ED care and care transitions after discharge, according to PLWD and their caregivers. We conducted a qualitative study involving ED patients ages 65 and older with confirmed or suspected dementia and their caregivers. The semistructured interview protocol followed the National Quality Forum's ED Transitions of Care Framework and addressed ED care, care transitions, and outpatient follow-up care. Interviews were conducted during an ED visit at an urban, academic ED. Traditional thematic analysis was used to identify themes. We interviewed 11 patients and 19 caregivers. Caregivers were more forthcoming than patients about facilitators and challenges experienced. Characteristics of the patients' condition (e.g., resistance to care, forgetfulness), the availability of family resources (e.g., caregiver availability, primary care access), and system-level factors (e.g., availability of timely appointments, hospital policies tailored to persons with dementia) served as facilitators and barriers to successful care. Some resources that would ameliorate care transition barriers could be easily provided in the ED, for example, offering clear discharge instructions and care coordination services and improving patient communication regarding disposition timeline. Other interventions would require investment from other parts of the health care system (e.g., respite for caregivers, broader insurance coverage). ED care and care transitions for PLWD are suboptimal, and patient-level factors may exacerbate existing system-level deficiencies. Insight from patients and their caregivers may inform the development of ED interventions to design specialized care for this patient population. This qualitative study also demonstrated the feasibility of conducting ED-based studies on PLWD during their ED visit.

The Current State of Neonatal Neurodevelopmental Follow-up Programs in North America: A Children's Hospitals Neonatal Consortium Report.

This study aimed to determine neonatal neurodevelopmental follow-up (NDFU) practices across academic centers. This study was a cross-sectional survey that addressed center-specific neonatal NDFU practices within the Children's Hospitals Neonatal Consortium (CHNC). Survey response rate was 76%, and 97% of respondents had a formal NDFU program. Programs were commonly staffed by neonatologists (80%), physical therapists (77%), and nurse practitioners (74%). Median gestational age at birth identified for follow-up was ≤32 weeks (range 26-36). Median duration was 3 years (range 2-18). Ninety-seven percent of sites used Bayley Scales of Infant and Toddler Development, but instruments used varied across ages. Scores were recorded in discrete electronic data fields at 43% of sites. Social determinants of health data were collected by 63%. Care coordination and telehealth services were not universally available. NDFU clinics are almost universal within CHNC centers. Commonalities and variances in practice highlight opportunities for data sharing and development of best practices. · Neonatal NDFU clinics help transition high-risk infants home.. · Interdisciplinary neonatal intensive care unit follow-up brings together previously separated outpatient service lines.. · This study reviews the current state of neonatal NDFU in North America..

Telemedicine care coordination and visit frequency in pediatric patients with type 1 diabetes in Oregon

IntroductionChildren with type 1 diabetes require close monitoring with visits every 3–4 months. COVID-19-induced telemedicine expansion may alleviate the challenge of high visit frequency that children with type 1 diabetes face. However, telemedicine’s impact on access to care may be limited if patients lack adequate support for telemedicine. The purpose of this study was to evaluate the impact of telemedicine care coordination services on visit frequency in an urban medical center without care coordination services versus a rural outreach program with established care coordination services serviced by the same providers. MethodsWe evaluated EHR data from 790 children receiving care between July 2018 and December 2021 at a single academic center in Oregon. We estimated differences in likelihood of adequately timed monitoring care over time by patient care coordination services status using Generalized Estimating Equations. ResultsJust prior to telemedicine expansion, patients receiving care coordination services were 25.6 % less likely to receive adequately timed monitoring care (95 % CI: 51.6 %, 114 %). Following telemedicine expansion, likelihood of adequately timed monitoring care increased from 28.8 % to 58.2 % among those receiving care coordination services and decreased from 38.7 % to 22.0 % among those not receiving care coordination services; increases in adequately timed monitoring care were 3.55 times greater in patients receiving care coordination services relative to those not (95 % CI: 2.10, 6.01). DiscussionFor pediatric patients with type 1 diabetes, telemedicine care coordination may be an important factor for increasing visit adherence and may increase the number of patients meeting goal visit frequency beyond levels seen prior to widespread telemedicine availability.

An evaluation of first responders’ intention to refer to post-overdose services following SHIELD training

BackgroundFirst responders [law enforcement officers (LEO) and Fire/Emergency Medical Services (EMS)] can play a vital prevention role, connecting overdose survivors to treatment and recovery services. This study was conducted to examine the effect of occupational safety and harm reduction training on first responders’ intention to refer overdose survivors to treatment, syringe service, naloxone distribution, social support, and care-coordination services, and whether those intentions differed by first responder profession.MethodsFirst responders in Missouri were trained using the Safety and Health Integration in the Enforcement of Laws on Drugs (SHIELD) model. Trainees’ intent to refer (ITR) overdose survivors to prevention and supportive services was assessed pre- and post-training (1–5 scale). A mixed model analysis was conducted to assess change in mean ITR scores between pre- and post-training, and between profession type, while adjusting for random effects between individual trainees and baseline characteristics.ResultsBetween December 2020 and January 2023, 742 first responders completed pre- and post-training surveys. SHIELD training was associated with higher first responders’ intentions to refer, with ITR to naloxone distribution (1.83–3.88) and syringe exchange (1.73–3.69) demonstrating the greatest changes, and drug treatment (2.94–3.95) having the least change. There was a significant increase in ITR score from pre- to post-test (β = 2.15; 95% CI 1.99, 2.30), and LEO—relative to Fire/EMS—had a higher score at pre-test (0.509; 95% CI 0.367, 0.651) but a lower score at post-test (0.148; 95% CI − 0.004, 0.300).ConclusionTraining bundling occupational safety with harm reduction content is immediately effective at increasing first responders’ intention to connect overdose survivors to community substance use services. When provided with the rationale and instruction to execute referrals, first responders are amenable, and their positive response highlights the opportunity for growth in increasing referral partnerships and collaborations. Further research is necessary to assess the extent to which ITR translates to referral behavior in the field.

Implementing a social work care coordination model for children and youth with special health care needs in a rural-urban health system

ABSTRACT This retrospective chart review examined care coordination among pediatric patients with varying levels of medical complexity who received care in a rural-urban health system. Care coordination utilization across patient acuity levels was examined for meaningful differences in frequency and duration of care coordination services. Results indicated that patients with more severe medical complexity had increased frequency and duration of care coordination services, as well as different patterns of care coordination activity utilization. This model of pediatric outpatient care coordination provides a flexible and highly targeted approach for stratification of care and services based on the needs of the individual patient.

SUSTAINABILITY OF CARE COORDINATION FOR PEOPLE WITH DEMENTIA WHO LIVE ALONE: LESSONS FROM A FEDERAL GRANT PROGRAM

Abstract Approximately one-third of older adults with dementia or cognitive impairment in the US live alone. People living alone with dementia (PLAWD) are at high risk for undesirable outcomes including malnutrition and falls, and the absence of cohabitants—who typically coordinate care—can contribute to unnecessary hospitalization and institutionalization. Since 2014, the Administration for Community Living (ACL) within the US Department of Health and Human Services has required PLAWD-focused services in ACL’s Alzheimer’s Disease Program Initiative. As part of a larger study of PLAWD-focused service sustainability, we examined ACL project final reports (n=73) to describe care coordination services for PLAWD and their sustainability plans. We excluded projects without services for PLAWD (n=14) or care coordination services (n=29) and where the lead organization closed (n=2) or project director died (n=1). Of 27 project reports indicating PLAWD-focused services and care coordination services, most were community-based organizations (CBOs, 67%); others were health systems/medical centers (15%), universities (11%), and government agencies (7%). PLAWD-focused care coordination services commonly entailed identifying PLAWD, assessing their needs, developing care plans, connecting PLAWD to need-relevant services, and purchasing supportive equipment, and sometimes involved training volunteers. Most organizations (70%) planned to sustain PLAWD services. The primary sustainability barrier faced by CBOs was lack of funding, whereas for health systems and universities partnering with CBOs was key to sustainability. This review of ACL-supported care coordination services for PLAWD and their sustainability highlights the need for research on the effectiveness of care coordination services for PLAWD and of different approaches to service sustainability.

Family Support Services and Reported Parent Coping Among Caregivers of Children with Emotional, Behavioral, or Developmental Disorders.

Caregivers of children with special health care needs (CSHCN) experience substantial strain caring for their child's special needs because of high needs for health and other support services. Caregivers of CSHCN with emotional, behavioral, or developmental problems (EBDPs) report stress and poor mental health at higher rates than caregivers of other CSHCN. Although family support services are associated with caregiver mental health and well-being among families of CSHCN, the association of these factors with caregiver coping has been underexamined. Using the Double ABCX Model of Family Adaptation to guide variable selection, this study uses 2016 to 2019 data from the National Survey of Children's Health. Univariate, bivariate, and multivariate logistic analyses examined the association between caregivers' receipt of adequate care coordination and emotional support services and their reported coping with the day-to-day strains of parenting. These relationships are compared between caregivers of CSHCN with and without EBDPs. Receipt of adequate care coordination was associated with higher rates of caregiver-reported positive coping for all caregivers of CSHCN who have no source of emotional support. Receipt of emotional support services was associated with increased reports of positive coping for caregivers for all CSHCN as well. Caregivers reporting only informal sources of emotional support, however, also reported higher rates of positive coping when compared with caregivers with no source of emotional support. Mobilization of resources that can aid caregivers in coordinating care and provide emotional support may play a key role in positive caregiver coping for families of CSHCN.

BARRIERS AND FACILITATORS TO IMPLEMENTING MEDICARE’S CHRONIC CARE MANAGEMENT IN RURAL PRIMARY CARE

Abstract In 2015, the Centers for Medicare and Medicaid Services introduced Chronic Care Management (CCM) to provide reimbursement to practices for care coordination services necessary to manage chronic conditions among older adults. However, uptake of this program among primary care practices is low, and few Medicare beneficiaries actually receive this service. Implementation of CCM may be even more challenging in rural, low-resourced areas. The purpose of this study was to examine factors associated with more and less successful implementation of CCM within primary care practices located in a rural state. A qualitative study was conducted, which was guided by the Consolidated Framework for Implementation Research (CFIR). Employees of practices (n = 8) that have implemented CCM were approached for study participation. Members (n = 17) of various healthcare teams were included in the study. Participants completed sociodemographic, professional, and practice history measures and completed a qualitative interview. Participants (n = 17) were predominantly White (n = 16; 94%), female (n = 16; 94%), and represented care coordinators, primary care providers, allied health professionals, and administrators. CrossTX records were analyzed to categorize practices by high and low implementation success. Content analysis, guided by CFIR, identified domains associated with implementation success, including Intervention Characteristics (I.e., Relative Advantage), Outer Setting (e.g., Patient Needs and Resources), Inner Setting (e.g., Implementation Climate, Leadership Engagement), and Process (e.g., Champions). Strategies to address barriers include addressing characteristics of the Inner Setting (e.g., Available Resources). Developing training mechanisms to address staff turnover is critical to address barriers.

PRAGMATIC, SUSTAINABLE, AND COST-FEASIBLE TECHNOLOGIES TO ENABLE REMOTE CARE COORDINATION SERVICES

Abstract The aim of this presentation is to communicate the approach and lessons learned in successfully deploying open source smart home and consumer-grade technologies to enable novel remote care coordination services for older adults as part of the CMS-funded ASSETs for Aging in Place demonstration project. Major barriers to use of technologies that enable service reach to rural or home-bound at-risk populations are technology availability, internet connectivity, cost, configuration, installation, ease of management, and usability and usefulness of clinically relevant data displays for decision-making to support personalized care coordination, coaching, and self-management goals. We have pioneered a reusable, innovative approach and infrastructure through partnership with the State of Missouri Department of Social Services and a non-profit hosting partner that facilitates testing and deployment of such remote services with broad goals of scalability and translation as starting principles. The specific focus of this presentation will describe technology selection, configuration, proof-of-concept testing, use of mobile hot spots to overcome broadband availability in rural areas, team composition and skills, introduction and training of the OT/Nurse/Social Worker teams to technology, resources required to stand up the team and transition to independent technology expertise in the field with mobile, video, and remote messaging tools, and user-centered design engagement of the care coordination and informatics teams to drive dashboard features and visual display developments for new work flows. An overview of the approach, technologies, and practical considerations to support research and development of new technology-enabled services for older adults will be presented.

Developing a Sustainable Care Delivery Payment Model for Children With Medical Complexity.

Children with medical complexity (CMC) are a small but growing population representing <1% of all children while accounting for >30% of childhood health care expenditure. Complex care is a relatively new discipline that has emerged with goals of improving CMC care, optimizing CMC family function, and reducing health care costs. The provision of care coordination services is a major function of most complex care programs. Unfortunately, most complex care programs struggle to achieve financial sustainability in a predominately fee-for-service environment. The article describes how 2 programs in Wisconsin worked with their state Medicaid payer through a Centers for Medicare and Medicaid Services Health Care Innovation Award to develop a sustainable complex care payment model, and the value the payment model is currently bringing to stakeholders. Key elements of the process included: Developing a relationship between payer and clinicians that allowed for an understanding of each's viewpoint, use of an accepted clinical service model, and an effort to measure cost of care for the service provided supported by time-study methodology.

Abstract A022: Assessing, understanding, and addressing social determinants of cancer health disparities through patient navigation among rural Arkansans

Abstract The Winthrop P. Rockefeller Cancer Institute at the University of Arkansas for Medical Sciences (UAMS), Office of Community Outreach and Engagement has developed a Cancer Patient Navigation Program dedicated to improving cancer care for everyone in Arkansas. The team includes nurse navigators and community health workers that help bridge the gap between cancer patients, and financial resources in the community, and health care providers. The Cancer Patient Navigation Program emphasizes patient empowerment through prevention, screening, and treatment for rural and underserved populations across the state. The aim of the program is to help eliminate barriers to health care by providing resources for cancer treatment to rural and underserved populations across Arkansas. Navigators and community health works are located throughout every geographic region of Arkansas and are representative of the diversity in the communities they serve. Navigators and community health workers use the Protocol for Responding to and Assessing Patients’ Assets, Risks, and Experiences (PRAPARE®) to identify cancer patients’ barriers to care. PRAPARE® is a standardized patient risk assessment tool consisting of a set of national core measures as well as a process for addressing the social drivers at both the patient and population levels. Since May 2022, the Cancer Patient Navigation program has assessed and addressed the needs of 350 cancer patients. The data collected by navigators and community health workers has improved care coordination services, increased collaborations with local community partners with similar goals, and provided a unique opportunity for UAMS to better understand challenges of cancer patients and provide more appropriate services and care that is needed on a community level. The PRAPRE data has allowed the Office of Community Outreach and Engagement to understand the number of social determinants risks as well as the most common social determinant risks in our patient population. The risk tally score established a baseline to determine who might be more “at risk” by both geographic location and cancer diagnosis. To date, the data collected has been analyzed to track referrals and interventions. The data will further be used to ensure community-engagement priorities and resources are integrated into all Winthrop P. Rockefeller Cancer Institute research cores and clinical enterprises. Addressing the adverse social drivers of health will ultimately allow UAMS to improve patient well-being, facilitate access to prevention, screening, and treatment. Citation Format: Valandra L. German. Assessing, understanding, and addressing social determinants of cancer health disparities through patient navigation among rural Arkansans [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A022.

What do parents think about the quality and safety of care provided by hospitals to children and young people with an intellectual disability? A qualitative study using thematic analysis.

Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual disability admitted to two tertiary state-wide children's hospitals and a children's palliative care centre; to describe and understand these factors to modify the Australian Patient Safety Education Framework to meet the particular needs for children and young people with intellectual disability. Parents of children with intellectual disability from two paediatric hospitals and a palliative care unit participated in semi-structured interviews to elicit their experiences of their child's care in the context of patient safety. Thirteen interviews were conducted with parents from various backgrounds with children with intellectual, developmental and medical diagnoses. Eight themes about safety in hospital care for children and young people with intellectual disability emerged from thematic analyses: Safety is not only being safe but feeling safe; Negative dismissive attitudes compromise safety, quality and care experience; Parental roles as safety advocates involve being heard, included and empowered; Need for purposeful and planned communication and care coordination to build trust and improve care; Systems, processes and environments require adjustments to prevent patient safety events; Inequity in care due to lack of resources and skills, Need for training in disability-specific safety and quality issues and Core staff attributes: Kindness, Patience, Flexibility and Responsiveness. Parents highlighted the dilemma of being dismissed when raising concerns with staff and being required to provide care with little support. Parents also reported a lack of comprehensive care coordination services. They noted limitations within the healthcare system in accommodating reasonable adjustments for a family and child-centred context. The development of an adapted Patient Safety Education Framework for children with intellectual disability should consider ways for staff to transform attitudes and reduce bias which leads to adaptations for safer and better care. In addition, issues that apply to quality and safety for these children can be generalised to all children in the hospital. Parent advocates in the project advisory team were shown the questions to determine their appropriateness for the interviews.

Current Status of Pediatric Oncology Clinics and Nursing Practices in Turkey.

Background: Cancer is a significant health problem in Turkey with pediatric cancer being the fourth leading cause of death among children. Pediatric oncology has been acknowledged as a pediatric subspecialty since 1983, and 3,000 new cases of childhood cancer are expected every year. Method: We describe our country's geography, the number and distribution of pediatric oncology centers, the profile of clinical and academic nurses, and our clinical practice. We present two nurse-led research projects. Results: Although nursing practice differs according to centers, treatment and care are usually evidence-based, especially in university and public hospitals in big cities. Nurses with an undergraduate education work in pediatric oncology units; however, few nurses with graduate degrees work in clinical settings. The Turkish Oncology Nurses Association supports the development and implementation of guidelines for evidence-based nursing care. Nurses' clinical responsibilities include patient admission to the clinic, patient and family education, care coordination, patient care, symptom management, palliative, and intensive care services. Results of two recent nurse-led studies highlight challenges to meet the needs of patients and families from surrounding countries, including refugees, and opportunities for nurses to provide holistic support to parents of hospitalized children. Discussion: Increasing the number of nurses is a priority to improve pediatric oncology nursing care. Actions to advance pediatric oncology nursing include developing advanced clinical roles for nurses with graduate degrees; supporting nurses caring for children and families from outside Turkey, including language support services; and resources to conduct national and international studies related to professional and holistic care delivery.