Dataset Information

Addressing unmet basic needs for children with sickle cell disease in the United States: clinic and staff perspectives.

ABSTRACT:

Background

The purpose of this study was to assess pediatric hematology clinic staff's perspectives regarding barriers and facilitators in addressing unmet basic needs for children with sickle cell disease (SCD).

Methodology

Six focus groups were held at four urban pediatric hematology clinics in the Northeastern region of the United States from November to December 2019. Discussion questions were developed to align with the integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) implementation science framework, focusing on the domains of context and recipient and how clinics address adverse social determinants of health (SDoH) in their patient populations. A summative content analytical approach was taken to identify major themes in the data.

Results

We discerned the following themes: (1) families of children with SCD experience numerous unmet basic needs; (2) clinic staff believed they had a role to play in addressing these unmet basic needs; (3) staff felt their ability to address families' unmet basic needs depended upon caregivers' capacity to act on staff's recommendations; and (4) clinic staff's ability to address these needs was limited by organizational and systemic factors beyond their control.

Conclusions

These findings have important implications for how best to address adverse SDoH for this vulnerable pediatric population so that urban-based pediatric hematology clinics can more equitably support families.

SUBMITTER: Loo S

PROVIDER: S-EPMC7802171 | biostudies-literature | 2021 Jan

REPOSITORIES: biostudies-literature

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Publications

Addressing unmet basic needs for children with sickle cell disease in the United States: clinic and staff perspectives.

Loo Stephanie S Brochier Annelise A Wexler Mikayla Gordon MG Long Kristin K Kavanagh Patricia L PL Garg Arvin A Drainoni Mari-Lynn ML

BMC health services research 20210112 1

<h4>Background</h4>The purpose of this study was to assess pediatric hematology clinic staff's perspectives regarding barriers and facilitators in addressing unmet basic needs for children with sickle cell disease (SCD).<h4>Methodology</h4>Six focus groups were held at four urban pediatric hematology clinics in the Northeastern region of the United States from November to December 2019. Discussion questions were developed to align with the integrated Promoting Action on Research Implementation i ...[more]

PMID: 33435984

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Project description:BackgroundUncomplicated urinary tract infections (uUTIs/acute cystitis) are among the most common infections in women worldwide. There are differences in uUTI treatment guidelines between countries and understanding the needs of physicians in diverse healthcare systems is important for developing new treatments. We performed a survey of physicians in the United States (US) and Germany to understand their perceptions of, and management approaches to uUTI.MethodsThis was a cross-sectional online survey of physicians in the US and Germany who were actively treating patients with uUTI (≥ 10 patients/month). Physicians were recruited via a specialist panel and the survey was piloted with 2 physicians (1 US, 1 Germany) prior to study commencement. Data were analyzed with descriptive statistics.ResultsA total of 300 physicians were surveyed (n = 200 US, n = 100 Germany). Across countries and specialties, physicians estimated 16-43% of patients did not receive complete relief from initial therapy and 33-37% had recurrent infections. Urine culture and susceptibility testing was more common in the US and among urologists. The most commonly selected first-line therapy was trimethoprim-sulfamethoxazole in the US (76%) and fosfomycin in Germany (61%). Ciprofloxacin was the most selected following multiple treatment failures (51% US, 45% Germany). Overall, 35% of US and 45% of German physicians agreed with the statement "I feel there is a good selection of treatment options" and ≥ 50% felt that current treatments provided good symptom relief. More than 90% of physicians included symptom relief amongst their top 3 treatment goals. The overall impact of symptoms on patients' lives was rated "a great deal" by 51% of US and 38% of German physicians, increasing with each treatment failure. Most physicians (> 80%) agreed that antimicrobial resistance (AMR) is serious, but fewer (56% US, 46% Germany) had a high level of confidence in their knowledge of AMR.ConclusionsTreatment goals for uUTI were similar in the US and Germany, although with nuances to disease management approaches. Physicians recognized that treatment failures have a significant impact on patients' lives and that AMR is a serious problem, though many did not have confidence in their own knowledge of AMR.

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Project description:Rationale & objectiveThere are many barriers to meeting the goal of increasing kidney transplants in the United States. It is important to understand dialysis and transplant center providers' existing practices and identified barriers to increasing the number of dialysis patients who are evaluated for and get wait-listed for a transplant.Study designCross-sectional survey of dialysis unit and transplant center staff in End Stage Renal Disease Network 6 (Georgia, North Carolina, South Carolina).Setting & participantsNinety-one transplant staff from all 9 transplant centers in the region and 421 dialysis staff from 421 facilities responded to the survey.PredictorsN/A.OutcomeProvider perceptions of barriers faced by patients in the kidney transplant evaluation process and suggestions for improving care.Analytical approachMixed methods. Descriptive analyses of responses to multiple-choice questions and qualitative analysis of open-ended survey responses.ResultsThe top 5 barriers to kidney transplantation as reported by transplant staff were transportation (63.7%), low health literacy (50.5%), lack of understanding about the transplant process (37.4%), distance to transplant center (29.7%), and low socioeconomic status (28.6%). When asked how dialysis units can help patients complete the evaluation process, the most common responses from transplant center staff were educating patients about transplant (54%), helping patients through steps in the process (35%), and better communication with transplant centers (15%). When dialysis unit staff were asked what could be done to help the facility improve its transplant wait-list rate, the most common responses were educational materials for patients and staff (55%), better communication with transplant centers (12%), and transportation and financial assistance (9%).LimitationsSurvey responses are from 1 end stage renal disease network.ConclusionsDialysis units, transplant centers, and ESRD networks can work together to help patients address key barriers to transplantation to improve the country's transplantation rate.

Dataset Information

Addressing unmet basic needs for children with sickle cell disease in the United States: clinic and staff perspectives.

Background

Methodology

Results

Conclusions

Publications

Addressing unmet basic needs for children with sickle cell disease in the United States: clinic and staff perspectives.

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