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1.
Emerg Infect Dis ; 29(1): 118-126, 2023 01.
Article in English | MEDLINE | ID: mdl-36573557

ABSTRACT

The COVID-19 pandemic has disproportionately affected persons in long-term care, who often experience health disparities. To delineate the COVID-19 disease burden among persons with intellectual disabilities, we prospectively collected data from 36 care facilities for 3 pandemic waves during March 2020-May 2021. We included outcomes for 2,586 clients with PCR-confirmed SARS-CoV-2 infection, among whom 161 had severe illness and 99 died. During the first 2 pandemic waves, infection among persons with intellectual disabilities reflected patterns observed in the general population, but case-fatality rates for persons with intellectual disabilities were 3.5 times higher and were elevated among those >40 years of age. Severe outcomes were associated with older age, having Down syndrome, and having >1 concurrent condition. Our study highlights the disproportionate COVID-19 disease burden among persons with intellectual disabilities and the need for disability-inclusive research and policymaking to inform disease surveillance and public health policies for this population.


Subject(s)
COVID-19 , Intellectual Disability , Humans , COVID-19/epidemiology , SARS-CoV-2 , Pandemics , Netherlands/epidemiology , Intellectual Disability/epidemiology
2.
BMJ Open ; 9(6): e025963, 2019 06 14.
Article in English | MEDLINE | ID: mdl-31203238

ABSTRACT

OBJECTIVES: The objective of this exploratory study was to see how the Patient-Reported Apnea Questionnaire (PRAQ) may impact the daily clinical practice of sleep centres, and why it may or may not work as expected. The hypotheses were tested that this patient-reported outcome measure makes patients more aware of which of their health complaints may be related to obstructive sleep apnoea (OSA), and that it improves patient-centredness of care by shifting the focus of care away from (only) medical problems towards the individual burden of disease and quality of life. DESIGN: Mixed methods. The quantitative study (surveys, patient records) was a before-and-after study. SETTING: Three sleep centres in The Netherlands (secondary care). PARTICIPANTS: 27 patients and 14 healthcare professionals were interviewed. 487 patients completed surveys pre-implementation, and 377 patients completed surveys post-implementation of the PRAQ. For the health records, 125 patients were included in the pre-implementation group, and 124 other patients in the post-implementation group. INTERVENTIONS: The PRAQ was used in clinical practice for six successive months. OUTCOME MEASURES: Scores on individual survey items, number of patients receiving non-medical treatment, adjustment of treatment at first follow-up, compliance with treatment. RESULTS: Patients were generally positive about the usefulness of the PRAQ before and during the consultation, as they felt more informed. Healthcare providers did not consider the PRAQ very useful, and they reported minor impact on their consultations. The surveys and health record study did not show an impact of the PRAQ on clinical practice. CONCLUSIONS: Implementing the PRAQ may be beneficial to patients, but this study does not show much impact with regard to patient-centredness of care. New Dutch guidelines for OSA care may lead to a greater emphasis on quality of life and value of care for patients, making its integration in clinical care potentially more useful.


Subject(s)
Patient Reported Outcome Measures , Quality of Life , Sleep Apnea, Obstructive/therapy , Surveys and Questionnaires , Adult , Aged , Aged, 80 and over , Controlled Before-After Studies , Female , Humans , Interviews as Topic , Male , Middle Aged , Netherlands , Patient Compliance
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