Data-Resource Profile: United Kingdom Optimum Patient Care Research Database.

Introduction: Electronic medical records (EMRs) maintained in primary care in the UK and collected and stored in EMR databases offer a world-leading resource for observational clinical research. We aimed to profile one such database: the Optimum Patient Care Research Database (OPCRD). Methods and Participants: The OPCRD, incepted in 2010, is a growing primary care EMR database collecting data from 992 general practices within the UK. It covers over 16.6 million patients across all four countries within the UK, and is broadly representative of the UK population in terms of age, sex, ethnicity and socio-economic status. Patients have a mean duration of 11.7 years' follow-up (SD 17.50), with a majority having key summary data from birth to last data entry. Data for the OPCRD are collected incrementally monthly and extracted from all of the major clinical software systems used within the UK and across all four coding systems (Read version 2, Read CTV3, SNOMED DM+D and SNOMED CT codes). Via quality-improvement programmes provided to GP surgeries, the OPCRD also includes patient-reported outcomes from a range of disease-specific validated questionnaires, with over 66,000 patient responses on asthma, COPD, and COVID-19. Further, bespoke data collection is possible by working with GPs to collect new research via patient-reported questionnaires. Findings to Date: The OPCRD has contributed to over 96 peer-reviewed research publications since its inception encompassing a broad range of medical conditions, including COVID-19. Conclusion: The OPCRD represents a unique resource with great potential to support epidemiological research, from retrospective observational studies through to embedded cluster-randomised trials. Advantages of the OPCRD over other EMR databases are its large size, UK-wide geographical coverage, the availability of up-to-date patient data from all major GP software systems, and the unique collection of patient-reported information on respiratory health.

Does decisional conflict differ across race and ethnicity groups? A study of parents whose children have a life-threatening illness.

OBJECTIVE: Children with life-threatening illnesses and their families may face a myriad of medical decisions in their lifetimes. Oftentimes these complicated medical decisions cause disagreements among patients, families, and providers about what is the best course of action. Although no evidence exists, it is possible that conflict may affect subgroups of the population differently. This study aims to investigate how decisional conflict varies among racial and ethnic subgroups. SAMPLE: Two hundred sixty-six surveys were completed with parents whose children have a life-threatening illness. All children lived in Florida and were enrolled in the Medicaid program. The Decisional Conflict Scale, overall and broken down into its five distinct subscales, was used to assess parental decision-making. Descriptive, bivariate, and multivariate analyses were conducted. Subgroup analyses were conducted on Latino respondents. RESULTS: Our bivariate results suggest that minority parents report less Effective Decision Making (p<0.05) and report less Support in Decision Making (p<0.05) compared to white, non-Hispanic parents. For the subgroup analysis, we found that those who identify as Mexican American and Central/South American report having greater Uncertainty in Choosing Options (p<0.05) and less Values Clarity (p<0.05) as compared to Puerto Rican or Cuban Americans. Results from the multivariate analyses suggest that those whose primary language is not English are associated with greater Uncertainty in Choosing Options (p<0.05). Values Clarity was lower for children who were diagnosed with their life-threatening condition at birth (p<0.05) as compared to children diagnosed at a later time. CONCLUSIONS: Our study is the first to describe racial and ethnic differences in decisional conflict of parents of children with life-threatening illnesses. Significant differences exist by race, ethnicity, language spoken, and diagnosis time across several subdomains of decisional conflict. These differences are important to address when creating clinical care plans, engaging in shared decision-making, and creating interventions to alleviate decisional conflict.

Factors affecting decisional conflict for parents with children enrolled in a paediatric palliative care programme.

UNLABELLED: Palliative care programmes have the potential to affect several health outcomes for children and families, including reducing decisional conflict. METHOD: A telephone survey was conducted with 140 parents of children with life-limiting illnesses enrolled in Florida's publicly funded paediatric palliative care programme (Partners in Care: Together for Kids). RESULTS: Multivariate results suggest that parents with less than a high school education had decisional conflict scores (DCS) that were 13 points higher (p<0.05) than parents with some college education. In addition, parents who indicated that they had recently made a decision for their children had DCS scores that were 7 points higher (p<0.05) than parents who indicated they had not. DISCUSSION: Our findings suggest that paediatric palliative care programmes should treat parents with lower educational levels as being particularly vulnerable and should consider allocating additional resources to them when a decision for their children is imminent.

Assessing non-response bias in pediatric palliative care research.

National experts have recognized a need for increased research in pediatric palliative care. However, when conducting research it is important to use rigorous methods, report significant and non-significant findings, and include information on responders and non-responders. Most studies do not present information on non-responders, yet this is critical as the results many not be generalizable if there are inherent differences between the two groups. Using survey data from parents whose children with life-limiting illnesses were enrolled in Florida's publicly funded pediatric palliative care program called Partners in Care: Together for Kids; this study investigates whether non-response bias exists, and if so, what characteristics are associated with non-response. Bivariate and multivariate analyses were conducted to determine whether individual characteristics differed between responders and non-responders. Throughout our analyses, we conducted the analyses using different ways in which 'non-response' can be defined. Our results suggest that regardless of how non-response is defined, Black, non-Hispanic parents were less likely to participate than White non-Hispanic parents. However, we also found that of the Black, non-Hispanic parents who did not participate, their primary reason for doing so was that they had non-working or disconnected phone numbers. Only 3% of the Black, non-Hispanic parents who did not participate flatly refused. Information from this study can be used to design interventions aimed at increasing minority participation in pediatric palliative care research.

Effect of a pediatric palliative care program on nurses' referral preferences.

PURPOSE: Florida was the first state to develop and implement a publicly funded pediatric palliative care program, which provides supportive care services to children and families from the point of diagnosis onward. Nurses employed by the Florida Department of Health, Children's Medical Services Network (CMSN) play an important role in this program as they are charged with identifying children with life-limiting illnesses in their caseloads for referral to the program. This study aims to estimate the differtences in referral preferences of nurses who work in Partners in Care: Together for Kids (PIC:TFK) program areas versus nurses who work in non-PIC:TFK areas. METHODS: Mail and Web-based surveys were conducted with 279 nurses, 141 of whom work in a PIC:TFK site and 138 did not. RESULTS: Results of the multivariate analyses suggest that few significant differences exist in the nurse's preferences to refer children to pediatric palliative care; however, there were significant differences in the preferred timing of referral. Nurses who work in an PIC:TFK area were 3.7 to 10.4 times as likely as nurses who do not work in a PIC:TFK area to refer children prior to the end of life. CONCLUSION: Our study provides evidence that nurses who have experience with a pediatric palliative care program are more likely to refer children to programs before the end of life. While our study results are encouraging, they also suggest that as the PIC:TFK program expands nurse training will be essential for equitable and appropriate referrals across a diverse set of illnesses.

Partners in care: together for kids: Florida's model of pediatric palliative care.

BACKGROUND: Many children with life-limiting illnesses in the United States could benefit from pediatric palliative care. However, national, state, and local barriers exist that hinder provision. One national barrier is the Medicare hospice reimbursement regulation that limits the provision of government subsidized hospice care to the final 6 months of life. In response to the critical need to provide palliative care earlier in children's illnesses, Florida became the first state to develop and implement an innovative model of care that provides services from the point of diagnosis onward, thereby waiving the 6-month reimbursement rule. In July 2005, the Partners in Care: Together for Kids program began. The program relies on partnerships between state-employed care coordinators who identify the children for possible enrollment and hospice staff who provide home and community-based services. OBJECTIVE: Our objective was to describe Florida's experiences in designing, implementing, and operating the program. DESIGN: Surveys were conducted with parents, hospices, and state agencies. Enrollment trends were identified using administrative data. RESULTS: As of January 2008, 468 children have been enrolled in the program. Approximately 85% of parents report they are satisfied with the program and 95% of parents would recommend the program. CONCLUSION: Florida's program is the first in the nation to provide government-subsidized pediatric palliative care from the point of diagnosis onwards. Lessons learned from Florida's experiences will help guide other states and health plans that desire to implement a similar model of care.