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Challenges of using and managing medication: a meta-ethnography of the experiences and perceptions of people with intellectual disability and people who support them

Por: Ghosh · I. · Adams · D. · Auguste · P. · Brown · A. · Chaplin · E. · Flynn · S. · Gauly · J. · Gill · P. · Langdon · P. E. · Mahon · D. · Martin · K. · Patterson · S. · Sutherland · D. · Tromans · S. J. · Chen · Y.-F. · Seers · K. · Supporting Medication use In people with a LEarning d
Objective

To explore the challenges experienced by people with intellectual disability, their carers and health and social care professionals when using and managing medication.

Design

A synthesis of qualitative research using meta-ethnography.

Data source

We searched seven databases: MEDLINE, Embase, CINAHL, Science, Social Science and Conference Proceedings Citation Indices (Web of Science), Cochrane Library, PsycINFO and Proquest Dissertations and Theses from inception to September 2022 (updated in July 2023).

Eligibility criteria for selecting studies

We included studies exploring the challenges and perceptions of people with intellectual disability, their carers and health and social care professionals regarding medication management and use.

Results

We reviewed 7593 abstracts and 475 full texts, resulting in 45 included papers. Four major themes were identified: (1) Medication-related issues, (2) navigating autonomy and relationships, (3) knowledge and training needs and (4) inequalities in the healthcare system. We formulated a conceptual framework centred around people with intellectual disability and described the interconnectedness between them, their carers and health and social care professionals in the process of managing and using medication. We identified challenges that could be associated with the person, the medication and/or the context, along with a lack of understanding of these challenges and a lack of capability or resources to tackle them. We developed an overarching concept of ‘collective collaboration’ as a potential solution to prevent or mitigate problems related to medication use in people with intellectual disability.

Conclusions

The effective management of medication for people with intellectual disability requires a collaborative and holistic approach. By fostering person-centred care and shared decision-making, providing educational and practical support, and nurturing strong relationships between all partners involved to form a collective collaboration surrounding people with intellectual disability, improved medication adherence and optimised therapeutic outcomes can be achieved.

PROSPERO registration number

CRD42022362903.

Noradrenaline for progressive supranuclear palsy syndromes (NORAPS): a randomised, double-blind, placebo-controlled, crossover Phase IIb clinical trial evaluating the efficacy and safety of oral atomoxetine for treating cognitive and behavioural changes i

Por: Durcan · R. · Paula · H. · Ghosh · B. C. P. · Street · D. · High · J. · McAlister · C. · Shepstone · L. · Russell · C. · Grant · K. · Igosheva · N. · Rodgers · C. T. · Jones · S. P. · Ye · R. · Kobylecki · C. · Church · A. · Antoniades · C. · Marshall · V. · Passamonti · L. · Rowe · J. B.
Introduction

Progressive supranuclear palsy (PSP) is a devastating neurodegenerative disease characterised by cognitive, behavioural and motor problems. Motor symptoms are highly disabling, while cognitive and behavioural changes have a major impact on carer burden, quality of life and prognosis. Apathy and impulsivity are very common, often coexistent in PSP, and negatively predict survival. In preclinical models and other diseases, apathy and impulsivity are associated with noradrenergic deficits, which can be severe in PSP.

Methods and analysis

Noradrenaline for Progressive Supranuclear Palsy Syndromes trial is a randomised, double-blind, placebo-controlled, crossover design, Phase IIb clinical trial to evaluate the efficacy and safety of oral atomoxetine for the treatment of cognitive and behavioural changes in PSP. Participants receive atomoxetine 40 mg (10 mg/mL oral solution) once daily or a matched placebo solution, in random order, each for 8 weeks. An ‘informant’, who knows the patient with PSP well, is co-recruited to complete some of the trial outcome measures. Participants remain in the trial for 22 weeks after randomisation. The primary objectives are to assess (1) safety and tolerability and (2) efficacy versus placebo on challenging behaviours as reported in a subscale of the Cambridge Behavioural Inventory. Secondary and exploratory measures relate to cognition, the PSP Rating Scale, mood and potential baseline predictors of individual response to atomoxetine computed from imaging, genetic and cognitive measures at baseline.

Ethics and dissemination

The trial was approved by the South Central-Oxford B Research Ethics Committee (REC) and the Medicines and Healthcare products Regulatory Agency (REC reference: 20/SC/0416). Dissemination will include publication in peer-reviewed journals, presentations at academic and public conferences and engagement with patients, the public, policymakers and practitioners.

Trial registration number

ISRCTN99462035; DOI: https://doi.org/10.1186/ISRCTN99462035; EudraCT (European Union Drug Regulating Authorities Clinical Trials Database)/CTIS (Clinical Trial Information System) number: 2019-004472-19; IRAS (Integrated Research Application System) number: 272063; Secondary identifying numbers: CPMS (Central Portfolio Management System) 44441.

PlacEntal Acute atherosis RefLecting Subclinical systemic atherosclerosis in women up to 20 years after pre-eclampsia (PEARLS): research protocol for a cohort study

Por: Jansen · G. · Alers · R.-J. · Janssen · E. B. · Jorissen · L. M. · Morina - Shijaku · E. · Severens-Rijvers · C. · van t Hof · A. · van Drongelen · J. · Scholten · R. R. · Al-Nasiry · S. · Stevens · D. · Ganzevoort · W. · Gordijn · S. · Cornette · J. · Mihl · C. · Kietelaer · B. · Ghos
Introduction

Despite being a leading cause of female morbidity and mortality, female-specific cardiovascular disease (CVD) is understudied, underdiagnosed and undertreated. Pregnancy complications involving the placenta, including pre-eclampsia, pregnancy-induced hypertension and foetal growth restriction, are thought to reflect global maternal vascular derangements that indicate a twofold to eightfold increased risk of future CVD. This calls for a better understanding of female cardiovascular pathophysiology to allow development of targeted screening and prevention strategies.

Acute atherosis is a placental vascular lesion, which histologically resembles systemic atherosclerosis. The PlacEntal Acute atherosis RefLecting Subclinical atherosclerosis study investigates the association between placental acute atherosis lesions and subclinical systemic atherosclerosis up to 20 years postpartum.

This study will improve our understanding of the relationship between pregnancy complications and CVD to identify potential prevention targets and treatments. In addition, it could determine whether the placenta can improve identification of young women at high risk of CVD. These women could benefit from risk-reducing interventions.

Methods and analysis

This longitudinal prospective cohort study will include women who are either currently pregnant or from a historical cohort. Both groups will have placental histopathology and a single postpartum CVD assessment. The CVD assessment will include medical history taking, blood tests, electrocardiography and echocardiography. Additionally, coronary CT angiography focusing on the presence of atherosclerotic plaques and calcium score will be carried out.

The currently pregnant women will either have a pre-eclamptic pregnancy (pre-eclamptic group) or an uncomplicated normotensive pregnancy (uncomplicated group), and their placenta will be collected prospectively. The single CVD assessment will be carried out 6–36 months postpartum.

Women from the historical cohort had a pre-eclamptic pregnancy 10–20 years ago. Placental tissue is available for reanalysis. The single CVD assessment will take place immediately and corresponds with 10–20 years postpartum.

Exclusion criteria are contraindications to diagnostic assessment necessities: iodinated contrast, beta-blockers or glyceryl trinitrate. Women with uncomplicated pregnancies will be excluded if they have a pre-existing auto-immune condition, chronic hypertension or diabetes mellitus. In the pre-eclamptic group, there are no additional exclusion criteria.

Ethics and dissemination

Ethical approval was granted by the Medical Ethics Committee in Maastricht University Medical Centre+ (NL52556.068.15/METC152019). Participants will give written informed consent. Results will be shared in peer-reviewed journals and conference presentations.

Trial registration number

NCT05500989; ClinicalTrials.gov Identifier.

Racial and Ethnic Disparities in Emergency Department Use Among Older Adults With Asthma and Primary Care Nurse Practitioner Work Environments

imageBackground Older adults from specific racial and ethnic minoritized groups experience disproportionately higher asthma prevalence, morbidity, and mortality. They also often use emergency departments (EDs) to manage their asthma. High-quality primary care can improve asthma control and prevent ED use. Nurse practitioners (NPs) provide an increasing proportion of primary care to minoritized patients, yet often, they work in poor work environments that strain NP care. Objectives We examined whether racial and ethnic health disparities in ED visits among older adults with asthma are moderated by the NP work environment in primary care practices. Methods In 2018–2019, we used a cross-sectional design to collect survey data on NP work environments from 1,244 NPs in six geographically diverse states (i.e., Arizona, California, New Jersey, Pennsylvania, Texas, and Washington). We merged the survey data with 2018 Medicare claims data from 46,658 patients with asthma to assess the associations of all-cause and ambulatory care-sensitive conditions, ED visits with NPs’ work environment, and race and ethnicity using logistic regression. Results More than one third of patients with asthma visited the ED in 1 year, and a quarter of them had an ambulatory care-sensitive condition ED visit. Black and Hispanic patients were more likely than White patients to have all-cause and ambulatory care-sensitive condition ED visits. NP work environment moderated the association of race with all-cause and ambulatory care-sensitive condition ED visits among patients with asthma. Greater standardized NP work environment scores were associated with lower odds of all-cause and ambulatory care-sensitive condition ED visits between Black and White patients. Discussion Disparities in ED visits between Black and White patients with asthma decrease when these patients receive care in care clinics with more favorable NP work environments. Preventing unnecessary ED visits among older adults with asthma is a likely benefit of favorable NP work environments. As the NP workforce grows, creating favorable work environments for NPs in primary care is vital for narrowing the health disparity gap.

Advanced Practice Nurses in Primary Care and Their Impact on Health Service Utilisation, Costs and Access Globally: A Scoping Review

ABSTRACT

Aim

Synthesise evidence on advanced practice nurses' impact on health services utilisation, healthcare costs, access and quality of care globally.

Design

Scoping review.

Methods

A scoping review guided by the Joanna Briggs Institute Manual for Evidence Synthesis and the PRISMA-ScR checklist.

Data Sources

PubMed, CINHAL and Embase for articles between 2016 and 2023.

Results

Eighteen studies were included (14 from the United States, two from the Netherlands and one from Australia and New Zealand each). Outcomes included health services utilisation, healthcare costs, access, and quality of care. Most studies reported advanced practice nursing patients had fewer emergency department (9 of 11 studies), fewer hospital (re-)admissions (9 of 10 studies) and primary care visits (3 of 3 studies). Seven (of eight) studies found advanced practice nursing care was associated with significantly lower healthcare costs. For access and quality of care, advanced practice nursing care was associated with lower consultation rates, similar mean number of patients seen, higher protocol adherence, more rural patient care and lower-to-similar quality delivery of chronic disease management.

Conclusion

Majority of the studies reported that advanced practice nursing care was associated with lower emergency department visits, hospital readmissions and costs. Access to care outcomes varied under advanced practice nursing care.

Implications for the Profession and/or Patient Care

Advanced practice nursing care can improve patient outcomes, reduce costs and impact access and quality of care. Practices need supportive work environments for advanced practice nurses to deliver high-quality, effective care.

Impact

Addressing the need for a synthesis of up-to-date evidence, this review highlights the importance of advanced practice nurses in primary care. Findings can inform global workforce development strategies to address health inequalities through effective advanced practice nursing integration.

Patient or Public Contribution

No patient or public contribution is required for this study.

Acute Care Use Among Patients With Multiple Chronic Conditions Receiving Care From Nurse Practitioner Practices in Health Professional Shortage Areas

imageBackground Patients with multiple chronic conditions often have many care plans, polypharmacy, and unrelieved symptoms that contribute to high emergency department and hospital use. High-quality primary care delivered in practices that employ nurse practitioners can help prevent the need for such acute care services. However, such practices located in primary care health professional shortage areas face challenges caring for these patients because of higher workloads and fewer resources. Objective We examined differences in hospitalization and emergency department use among patients with multiple chronic conditions who receive care from practices that employ nurse practitioners in health professional shortage areas compared to practices that employ nurse practitioners in non-health professional shortage areas. Methods We performed an analysis of Medicare claims, merged with Health Resources and Services Administration data on health professional shortage area status in five states. Our sample included 394,424 community-dwelling Medicare beneficiaries aged ≥65 years, with at least two of 15 common chronic conditions who received care in 779 practices that employ nurse practitioners. We used logistic regression to assess the relationship between health professional shortage area status and emergency department visits or hospitalizations. Results We found a higher likelihood of emergency department visits among patients in health professional shortage areas compared to those in non-health professional shortage areas and no difference in the likelihood of hospitalization. Discussion Emergency department use differences exist among older adults with multiple chronic conditions receiving care in practices that employ nurse practitioners in health professional shortage areas, compared to those in non-health professional shortage areas. To address this disparity, the health professional shortage area program should invest in recruiting and retaining nurse practitioners to health professional shortage areas to ease workforce shortages.

Out‐of‐pocket expenditure among patients with diabetic foot ulcer in a tertiary care hospital of south India: A cross‐sectional study

Abstract

Diabetic foot ulcer is a debilitating complication of long-standing diabetes mellitus. Patients lose their earning potential, face repeated hospitalizations, and are forced to bear heavy treatment costs. This places an enormous financial burden on the patients and their families. This study seeks to ascertain the out-of-pocket expenditure among these patients and correlate it with their risk factor profile. In this hospital-based cross-sectional study, a total of 154 patients with diabetic foot ulcers or amputations have been studied with an elaborate patient questionnaire and relevant clinical examinations. The costs incurred and the risk factors of the patients were analyzed for statistical association. The median total annual out-of-pocket expenditure for the management of diabetic foot ulcers among the study participants was found to be ₹29 775 (₹9650–₹81 120) ($378.14 [$122.56–$1030.22]). Out of the total expenditure, 58.49% went towards direct medical costs, 5.64% towards direct non-medical costs, and 35.88% for indirect costs. Medications, ulcer dressing and periodic debridement have accounted for 79.26% of direct medical costs. Transportation (61.37%) and patient's loss of income (89.45%) account for the major costs under the direct non-medical and indirect cost categories, respectively. A high ulcer grade and area, long ulcer duration, and past history of ulcers have higher expenditure. Patients seeking treatment from private establishments and those engaged in professional/skilled occupations have higher expenses. Adequate dressing of foot ulcers and proper footwear are associated with lower treatment expenditure. 68.8% of the participants have faced catastrophic expenditure due to treatment costs of diabetic foot ulcers. Adequate glycaemic control and proper foot care are necessary. Patients must seek medical care at the earliest in case of foot ulceration. Clinicians must provide proper wound care, institute effective antibiotics, and manage the complications. Government and insurance schemes are required to alleviate the patients' financial burden.

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