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Prevalence and practice for rare diseases in primary care: a national cross-sectional study in the USA.

ABSTRACT: OBJECTIVES:There are more than 7000 rare diseases in the USA, and they are prevalent in 8% of the population. Due to life-threatening risk and limited therapies, early detection and treatment are critical. The purpose of this study was to explore characteristics of visits for patients with rare diseases seen by primary care physicians (PCPs). DESIGN:The study used a cross sectional study using a national representative dataset, the National Ambulatory Medical Care Survey for the years 2012-2014. SETTING:Primary care setting. PARTICIPANTS:Visits to PCPs (n=22?306 representing 354 507 772 office visits to PCPs). PRIMARY OUTCOME MEASURES:Prevalence of rare diseases in visits of PCPs was the primary outcome. Bivariate analyses and logistic regression analyses were used to compare patients with rare diseases and those without rare diseases and examined characteristics of PCP visits for rare diseases and practice pattern. RESULTS:Among outpatient visits to PCPs, rare diseases account for 1.6% of the visits. The majority of patients with rare diseases were established patients (93.0%) and almost half (49.0%) were enrolled in public insurance programmes. The time spent in visits for rare diseases (22.4?min) and visits for more common diseases (21.3?min) was not significantly different (p=0.09). In an adjusted model controlling for patient characteristics (age, sex, types of insurance, reason for this visit, total number of chronic disease, having a rare disease and established or new patient), patients with rare diseases were 52% more likely to be referred to another provider (OR 1.52, 95%?CI, 1.01 to 2.28). CONCLUSIONS:Visits for rare diseases are uncommon in primary care practice. Future research may help to explain whether this low level of management of rare diseases in primary care practice is consistent with a goal of a broad scope of care.

SUBMITTER: Jo A

PROVIDER: S-EPMC6500220 | biostudies-literature | 2019 Apr

REPOSITORIES: biostudies-literature

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Prevalence and practice for rare diseases in primary care: a national cross-sectional study in the USA.

Jo Ara A Larson Samantha S Carek Peter P Peabody Michael R MR Peterson Lars E LE Mainous Arch G AG

BMJ open 20190401 4

<h4>Objectives</h4>There are more than 7000 rare diseases in the USA, and they are prevalent in 8% of the population. Due to life-threatening risk and limited therapies, early detection and treatment are critical. The purpose of this study was to explore characteristics of visits for patients with rare diseases seen by primary care physicians (PCPs).<h4>Design</h4>The study used a cross sectional study using a national representative dataset, the National Ambulatory Medical Care Survey for the y ...[more]

PMID: 30940763

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Project description:BACKGROUND:Due to the perennial shortage of diabetes specialists, primary care physicians (PCPs) constitute the largest diabetes care manpower in Nigeria. However, the competence of the PCPs to undertake this task is not known. This study was aimed at evaluating diabetes care knowledge and practice among PCPs in Southeastern part of Nigeria. METHODS:This was a cross-sectional study among PCPs in Southeastern Nigeria. Diabetes care knowledge and practices were evaluated using a structured self administered questionnaire. RESULTS:A total of 64 PCPs with mean duration of practice of 17.3 ± 11.6 years completed the study. 65.6% were in private practice and 50% attended to between 11 and 20 persons living with diabetes (PLWD) weekly. Majority (78.1%) had not participated in any diabetes training since graduation from medical school and 79.9% were not aware of any diabetes clinical practice guideline. The PCPs had adequate knowledge of classical symptoms of diabetes. However, they had very poor knowledge of glycemic thresholds for diagnosis of diabetes which was 26.6, 45.3 and 10.9% for fasting blood glucose (FBG), random blood glucose (RBG) and glycated hemoglobin (A1c) respectively. We observed serious gaps in diabetes care practice such that only 18.8% of the respondents performed foot examination on newly diagnosed PLWD while 28.1 and 39.1% provided counseling on foot care and hypoglycemia respectively. Annual comprehensive foot examination was conducted by only 12.5%, none of the physicians ever screened for microalbuminuria and only 21.9% conducted annual dilated eye examination. Majority (57.8%) rated their confidence in prescribing insulin as "low" and only 23.4% had ever prescribed outpatient insulin for type 2 diabetes in their practice. Glycemic monitoring was largely limited to FBG and only 17.2% monitored A1c. Duration of practice more than 10 years (OR 10.1; P 0.034) and non participation in diabetes training (OR 6.5; P 0.027) were significant predictors of poor diabetes care knowledge. CONCLUSION:Diabetes care knowledge and practice were poor among PCPs in Southeast Nigeria. There is an urgent need to improve their capacity to provide diabetes care through periodic training.

Project description:BackgroundIntegrated dental services within the Health System, particularly at primary health care, are crucial to reverse the current impact of oral diseases, which are among the most prevalent diseases worldwide. However, the use of dental services is determined by complex phenomena related to the individual, the environment and practices in which care is offered. Therefore, factors associated with dental appointments scheduling can affect positively or negatively the use of dental services. The aim of the present study was to evaluate the indicators for dental appointment scheduling in Primary Health Care (PHC).MethodsThe present is a cross-sectional analytical study that used data from the external assessment of the third cycle of the National Program for Improving Access and Quality in Primary Care (PMAQ-AB), carried out between 2017 and 2018, in Brazil. The final sample consisted of 85,231 patients and 22,475 Oral Health teams (OHTs). The outcome variable was the fact that the user sought for a dental appointment at the Primary Health Care Unit. A multilevel analysis was carried out to verify the association between individual variables (related to users) and contextual variables (related to the OHTs) in relation to the outcome.ResultsOnly 58.1% of the users interviewed at these Primary Health Care Units seek the available dental care. The variables with the greatest effect on the outcome were the patient's age up to 42 years old (OR = 2.03, 95% CI: 1.96-2.10), at individual level, and 'oral health teams that assisted no more than a single family health team (FHT)' (OR = 1.29, 95% CI: 1.23-1.36) at contextual level. Other variables were also associated with the outcome, but with a smaller effect size.ConclusionIn conclusion, users' age and work process of OHT were indicators for dental appointment scheduling. Our results suggest that when OHT put the National Oral Health Policy guidelines into practice, by assisting only one FHT, the chance for PHC users seeking dental appointments is higher than OHTs that assist more than one FHT. Regarding age, patients aged up to 42 years are more likely to seek an appointment with a dentist.

Project description:BACKGROUND:Little is known as to whether primary care teams' perceptions of how well they have implemented the Chronic Care Model (CCM) corresponds with their patients' own experience of chronic illness care. We examined the extent to which practice members' perceptions of how well they organized to deliver care consistent with the CCM were associated with their patients' perceptions of the chronic illness care they have received. METHODS:Analysis of baseline measures from a cluster randomized controlled trial testing a practice facilitation intervention to implement the CCM in small, community-based primary care practices. All practice "members" (i.e., physician providers, non-physician providers, and staff) completed the Assessment of Chronic Illness Care (ACIC) survey and adult patients with 1 or more chronic illnesses completed the Patient Assessment of Chronic Illness Care (PACIC) questionnaire. RESULTS:Two sets of hierarchical linear regression models accounting for nesting of practice members (N = 283) and patients (N = 1,769) within 39 practices assessed the association between practice member perspectives of CCM implementation (ACIC scores) and patients' perspectives of CCM (PACIC). ACIC summary score was not significantly associated with PACIC summary score or most of PACIC subscale scores, but four of the ACIC subscales [Self-management Support (p < 0.05); Community Linkages (p < 0.02), Delivery System Design (p < 0.02), and Organizational Support (p < 0.02)] were consistently associated with PACIC summary score and the majority of PACIC subscale scores after controlling for patient characteristics. The magnitude of the coefficients, however, indicates that the level of association is weak. CONCLUSIONS:The ACIC and PACIC scales appear to provide complementary and relatively unique assessments of how well clinical services are aligned with the CCM. Our findings underscore the importance of assessing both patient and practice member perspectives when evaluating quality of chronic illness care. TRIAL REGISTRATION:NCT00482768.

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Prevalence and practice for rare diseases in primary care: a national cross-sectional study in the USA.

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Prevalence and practice for rare diseases in primary care: a national cross-sectional study in the USA.

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