The Role of the Community Pediatric Clinician in Providing Medical Guidance for Youth with Juvenile Legal Involvement.

Health Equity in Sickle Cell Research and Access to Therapy

BackgroundMinimally invasive tissue sampling (MITS) has increasingly been used to improve the diagnosis of disease and identification of the cause of death, particularly in underserved areas. However, there are multiple barriers to accessing those who die within the community, our study aimed to explore the perceptions and insights of community members and healthcare providers regarding the feasibility of implementing MITS in community settings.MethodsA qualitative exploratory study was conducted. A total of twenty one in-depth interviews were conducted with deceased infants’ parents, elders of the family, religious leaders, community leaders, and funeral workers. Focus group discussions were conducted with health care providers (n = 14) in two peri-urban slum areas of Karachi, Pakistan. The duration of this study was from August to October 2020. Data was analyzed using thematic analysis and was coded and merged into categories forming eight major themes.ResultsIn general, participants viewed minimally invasive tissue sampling (MITS) as beneficial for improving child health, though some had concerns about disrespecting the deceased during sample collection. Misinformation, fear of needles, and medical procedures were major barriers to MITS implementation. To enhance acceptance, community and religious leaders suggested using religious rulings, obtaining parental consent, ensuring confidentiality, and increasing efforts of community engagement. Community healthcare providers, along with funeral workers, recommended providing community members with grief counseling to increase study participation. Besides concerns about sampling interfering with respect for the decease, community members also raised concerns about misinformation. Further, participants provided feedback on the design and appearance of the mobile van used to collect MITS samples from children under the age of five.ConclusionThis study is critical for understanding the challenges associated with implementation of community-based MITS sampling in Pakistan. Integrating the use of a mobile van for sample collection, grief counseling along with community engagement sessions and advocacy will help address community-based misinformation and develop community trust.

e17514 Background: While nearly 20% of adult cancer patients are eligible for cancer clinical trials, less than 3% of cancer patients participate. Rates of participation are lower among communities of color and the medically underserved. Enhanced community engagement and provider training about cancer clinical trials can potentially result in greater awareness, access, and ultimately, patient accrual. Methods: A three-year Pilot Education Program was developed to explore the impact and feasibility of a community-driven outreach and education intervention focusing on community members, community health care providers, and cancer researchers in three medically underserved communities. Using a train-the-trainer model, PEP sought to raise clinical trial awareness among peers and encourage public inquiries about clinical trials. Workshops for clinical trials staff addressed recruitment and retention practices. Additionally, community sites worked to reduce local policy barriers to clinical trials participation.PEP used web-based surveys, interviews, focus groups and field observation to evaluate impact. Results: Seventy-five trainers were recruited. PEP reached 882 community members (63% minority), 374 health care providers (16% minority) and 61 cancer clinical trial staff. Approximately 5,800 individuals were exposed to educational activities through extended community outreach activities and dissemination of educational materials. Among those completing evaluation surveys, 66% of community leader trainees said they spoke to others about cancer clinical trials. Seventy-two percent of health care providers agreed their role is to inform patients about the possibility of receiving treatment through a clinical trial. Among cancer clinical trial staff, 80% indicated intention to work with community groups on cancer clinical trials education. Seventy-seven unique patient profiles were created with a national cancer clinical trials matching service also associated with PEP. Conclusions: Results from ENACCT's Pilot Education Program suggest promise in improving knowledge among community leaders and health care providers, and fostering greater peer-to-peer education about cancer clinical trials. [Table: see text]

An intensive workshop on the management of Alzheimer's disease was implemented to train primary care physicians in the diagnosis and long‐term care management of patients with dementia and to provide communities with a professional source of information on dementia issues. Before enrollment in the workshop, all participants were asked to commit to training their community physicians and health care providers in local educational activities on dementia. Effectiveness of the workshop was assessed with a pre‐ and a postworkshop questionnaire and postworkshop telephone interviews. Twenty‐eight primary care physicians attended: 25% were internists and 71% were family practitioners. Thirty‐three percent practiced in rural communities, and 32% were nursing home directors. Twenty‐one participants completed questionnaire pretesting, and fourteen completed posttesting. Seventeen responded to a 6‐month postworkshop telephone interview. Forty‐one percent of respondents had used resource materials in didactic sessions with physicians and other health care providers in their own communities. All participants interviewed described greater comfort in patient education settings, such as nursing home team conferences, family meetings, and counseling sessions. Participants showed some gains in knowledge about available community resources and their use. There was no difference in pretest and posttest Alzheimer's Disease Knowledge Test scores. Intensive workshops appear to be an effective and efficient means of disseminating geriatric training to primary care physicians and community health care providers.

Surveillance for Sickle Cell Disease - Sickle Cell Data Collection Program, Two States, 2004-2018.

A majority of nurses struggled with a negative emotion of anger, doubt, fear, or anxious, uncomfortable in the face of death and dying. However, little was known about community health care providers’ in China. Therefore, we conducted a study to investigate their knowledge and attitudes toward end-of-life care and analyze its influencing factors. To provide reference for developing effective strategies to promote end-of-life care in China.A total of 132 community health care providers of 10 community health care centers in Changzhi city were investigated by a Questionnaire of Knowledge and Attitudes toward Caring for the Dying from May, 2017 to December, 2017, and data was analyzed by SPSS 22.0 software.Of the 132 community health care providers who were under investigation, 70 knew about hospice care, but they rated their overall content on end-of-life care as inadequacy, especially in communication skills and knowledge of pain management. The average score of attitudes was 3.47 (SD = 0.44), the lowest score was in the subscale of nurse−patient communication, which was 2.91 (SD = 0.65). Health care providers who had worked for more than 11 years, who had experiences of the death of relatives or friends, and who had previous experiences of caring for terminal patients had more positive attitudes toward caring for the dying (P < .05 for all). There was a significant relationship between community health care providers’ attitudes toward death and their attitudes toward end-of-life care (r = −0.282, P < .01). The significant predictors of attitudes toward end-of-life care were attitudes toward death (β = −0.342), experiences of the death of relatives (β=−0.207), experiences of caring for the dying (β = 0.185), and working experience (β = 0.171).Community health care providers had positive attitudes toward end-of-life care, but they lacked systematic and professional knowledge and skills of caring for the terminal patients. Education is the top priority. It is imperative to set up palliative care courses and life-death education courses, establish an indigenous end-of-life care model, and improve policies, systems, and laws to promote end-of-life care.

Early Hydroxyurea Use May be Neuroprotective in Children with Sickle Cell Anemia

Finally, a consensus statement on sickle cell disease manifestations: A critical step in improving the medical care and research agenda for individuals with sickle cell disease

Ensuring patients receive appropriate (Centers for Disease Control and Prevention-recommended) and prompt (≤14 days of specimen collection) treatment is critical to decrease gonorrhea and early syphilis (ES) incidence. The objectives were to (1) quantify treatment performance among community health care providers (CHPs), (2) compare CHP treatment performance to local health department goals, and (3) describe variation in treatment performance by CHP characteristics in Baltimore City, Maryland. Surveillance data for gonorrhea and ES diagnoses reported between January 2018 and December 2019 were used. Treatment performance measures were calculated for each CHP (gonorrhea: 171 CHPs; ES: 122 CHPs). Measures were (1) percent treated among all diagnoses (goal: ≥90%), (2) percent appropriately treated among diagnoses treated (goal: ≥90% gonorrhea, ≥95% ES), and (3) percent promptly treated among diagnoses appropriately treated (goal: ≥85%). Treatment performance measures and achievement of goals were compared across CHP characteristics. For gonorrhea, median percent treated, appropriately treated, and promptly treated were 71.4%, 95.0%, and 100.0%, respectively; 29.8% met treated goals. The majority achieved appropriately treated (62.9%) and promptly treated (76.8%) goals. Community health care practices reporting high (vs. low) volume of gonorrhea diagnoses less frequently achieved percent-treated goals (12.2% vs. 35.4%, P = 0.008). Median value for all ES treatment performance measures was 100.0%. Most achieved treated (90.2%) and appropriately treated (95.9%) goals. Less than half (49.2%) achieved the promptly treated goal. Community health care practices reporting high (vs. low) volumes of ES less frequently achieved promptly treated goals (33.3% vs. 54.4%, P = 0.045). Substantial gaps in reporting gonorrhea treatment and prompt ES treatment were observed. Practice-level interventions to facilitate reporting gonorrhea treatment and provide prompt ES treatment are needed.

Recent legislation mandating reporting of undocumented immigrants may instill fear of discovery when they access emergency department (ED) services. The objectives of this study were to: 1) characterize the knowledge and beliefs of undocumented Latino immigrants (UDLI) about health care workers' reporting (or nonreporting) of illegal immigrants in the ED, 2) determine whether UDLI fear discovery when presenting to the ED, and 3) determine the nature and sources of this fear. This was a cross-sectional study of UDLI and two comparison groups conducted in two California county EDs, from November 2009 to August 2010. The authors interviewed a convenience sample of adult UDLI, Latino legal residents (LLR), and non-Latino legal residents (NLLR) using a structured instrument in their native language. The main outcome was fear of discovery among UDLI and the sources of that fear. Of 1,224 patients approached, 1,007 (82.3%) were interviewed: 314 UDLI, 373 LLR, and 320 NLLR. The median age was 43 years (interquartile range [IQR] = 31 to 55 years), and 51% were male. UDLIs were less likely to speak English (14%, 95% confidence interval [CI] = 10% to 18%), have health insurance (39%, 95% CI 32% to 44%), or have a regular primary care provider (PCP; 39%, 95% CI = 34% to 45%), compared to LLR (English 56%, 95% CI = 51% to 61%; health insurance 50%, 95% CI = 45% to 55%; regular PCP 51%, 95% = CI 46% to 57%) and NLLR (English 95%, 95% CI = 92% to 97%; health insurance 49%, 95% CI = 43% to 54%; regular PCP 51%, 95% CI = 45% to 56%). Of the 16% of UDLI who stated that nurses and doctors treat undocumented immigrant patients differently than citizens, 41% (95% CI = 29% to 54%) reported less respect given to UDLI by staff. Thirty-two percent of UDLI had heard of Proposition 187, 13% believed hospital staff reported UDLI to immigration authorities, and 9% said they were asked about their citizenship status. Fear of coming to the hospital because of discovery was expressed by 12% (95% CI = 9% to 16%) of UDLI, with 42% (95% CI = 28% to 58%) citing discussions with friends/family, 32% (95% CI = 19% to 47%) citing media and 16% (95% CI = 7% to 30%) citing both as sources of this fear. One in eight of UDLI presenting to the ED express fear of discovery and consequent deportation. Belief that medical staff report UDLI and recent immigration are risk factors for this fear. Family, friends, and media are the primary sources of these concerns.

Living Beyond Life Expectancy: Experience with Aging for Older Adults with Sickle Cell Disease

Background:Biochemical parameters vary in subjects with different hemoglobin phenotypes, compared with normal controls.Aim:The aim was to evaluate serum creatine kinase (CK) activity and inorganic phosphate concentrations in Nigerian adults with homozygous and heterozygous hemoglobin phenotypes.Subjects and Methods:A prospective study, carried out at the hematology out-patient clinic of our hospital, a community health center and a private hospital, all in Anambra state. Subjects included hemoglobin phenotypes AA, AS, and SS, in steady state and vaso-occlusive crisis (VOC). Samples were collected for serum CK activity and inorganic phosphate concentrations. Data obtained were analyzed using SPSS 16.0 (SPSS Inc., Chicago IL, USA). Means were compared using the Student's t-test and statistical significance was set at P < 0.05.Results:A total of 100 subjects participated in the study. There was a statistically significant difference in the means of serum CK activity in hemoglobin SS (HbSS) in VOC versus hemoglobin AA (HbAA) (P = 0.01) and HbSS in steady state versus HbAA (P = 0.02) but not in hemoglobin AS (HbAS) versus HbAA (P = 0.79) and HbSS in VOC versus HbSS in steady state (P = 0.06). A statistically significant difference was noted in the means of serum inorganic phosphate concentration in HbSS in VOC versus HbAA (P = 0.01), but not in HbSS in steady state versus HbAA (P = 0.43), HbSS in VOC versus HbSS in steady state (P = 0.09) and HbAS versus HbAA (P = 0.20).Conclusion:Sickle cell disease is a predictor for high serum CK activity and low serum concentration of inorganic phosphate, particularly in VOC. There may be a need to monitor serum CK activity in HbSS subjects presenting with major VOC.

Objectives The aim of the present study was to examine health information transfer and continuity of care arrangements between prison and community health care providers (HCPs) for women in prison. Methods Medical records of women released from New South Wales prisons in 2013-14 were reviewed. Variables included health status, health care in prison and documented continuity of care arrangements, including information transfer between prison and community. Associations were measured by adjusted odds ratios (AORs) using a logistic regression model. Text from the records was collected as qualitative data and analysed to provide explanatory detail. Results In all, 212 medical records were systematically sampled and reviewed. On prison entry, information was requested from community HCPs in 53% of cases, mainly from general practitioners (GPs, 39%), and was more likely to have occurred for those on medication (AOR 7.08; 95% confidence interval (CI) 3.71, 13.50) or with schizophrenia or other psychotic disorders (AOR 4.20; 95% CI 1.46, 12.11). At release, continuity of care arrangements and health information transfer to GPs were usually linked to formal pre-release healthcare linkage programs. Outside these programs, only 20% of records had evidence of such continuity of care at release, with the odds higher for those on medication (AOR 8.28; 95% CI 1.85, 37.04) and lower for women with problematic substance misuse (AOR 0.32; 95% CI 0.14, 0.72). Few requests for information were received after individuals had been released from custody (5/212; two from GPs). Conclusion Increased health information transfer to community HCPs is needed to improve continuity of care between prison and community. What is known about the topic? Many women in prison have high health needs. Health and well being are at further risk at the time of transition between prison and community. What does this paper add? This study provides evidence that outside formal programs, which are currently available only for a minority of women, continuity of care arrangements and transfer of health information do not usually occur when women leave prison. Pragmatic choices about continuity of care at the interface between prison and community may have been made, particularly focusing on medication continuity. Barriers to continuity of care and ways forward are suggested. What are the implications for practitioners? Siloing of health care delivered within prison health services through lack of continuity of care at release is wasteful, both in terms of healthcare costs and lost opportunities to achieve health outcomes in a vulnerable population with high health needs. There is need for an increased focus on continuity of care between prison and community health services, HCP support and training and expansion of pre-release planning and healthcare linkage programs to assist larger numbers of women in prison.

ObjectivesWe used the National Health Interview Survey (NHIS) data set to examine the prevalence of comorbid medical conditions; explore barriers to accessing healthcare and special educational services; and assess the...

Introduction: Community clinic (CC) an innovative platform for integrated care, is added to health system of Bangladesh. This is the first point of contact to deliver primary health care (PHC) for every 6000 population at their door step within half an hour walk. Though started in 1998, the initiative was closed in 2001 due to change of government. Since revitalized in 2009, there are 13136 CCs operational as of March 2016. Each CC is run by one Community Health Care Provider (CHCP) and 13822 CHCP (53% women and 47% men) has been recruited so far. Practice Changed: In addition to providing integrated care, the CC is siting an example of engaging community which starts with donation of land by community to construct the facility. The community is forming community group (CG) for effective management of CC which is empowering them. The CG is comprised of 13 to 17 members at least one third of whom are female. The CG is taking care of the daily operation including monitoring and evaluation, ensuring security and cleanliness, encouraging community participation and local fund generation with its transparent use. The community participation is even more ensured with formation of three community support groups (CSG) which in addition to providing support to CG is creating awareness, helping community in getting services including referral, disseminating health, nutrition and family planning messages, helping in local fund raising. Theory of Change: The aim of the project is not only to provide integrated care at the door steps of underprivileged and vulnerable but also encouraging the community to take responsibility of own health as well as managing the CC. Highlights: The CHCPs are providing maternal and neonatal, reproductive and family planning services, doing integrated management of childhood illness, conducting Expanded Program of Immunization (EPI), education and counseling, establishing effective referral linkage with higher facilities and doing reporting using DHIS 2. In addition to that CHCPs are also conducting normal delivery in about 1000 CCs. The CHCPs are empowered with blood pressure instrument, glucometer, and list of 33 drugs to prescribe. They are authorized to generate and spend fund which gives them freedom to run the CC better and increase their self-esteem. CHCPs are facing job insecurity and lack of carrier planning as they are recruited under project. Moreover CC is a political icon and may be deleted with change of political vision. Sustainability: Donation of land by community, management by CG and supporting by CSGs ensures ownership of the CC by the community and ensures its sustainability. CC the first point of contact for comprehensive care is encouraging community to take responsibility of own health. Conclusions: Emphasis has to be given to create awareness and demand for health especially among the vulnerable. Advocacy is required to engage community more in management of CC. Proper career planning and incorporating CHCP in mainstream is important to utilize their enthusiasm. Nationwide scale up of CC to cover every six thousand population to ensure integrated care is essential to attain SDGs.