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This study explored the experience of stigma and access to healthcare by persons with long COVID from the majority Dutch and two ethnic minority populations (Turkish and Moroccan) living in the Netherlands.
This was a cross-sectional qualitative study that employed inductive and deductive thematic approaches to data analysis using MAXQDA.
Between October 2022 and January 2023, 23 semi-structured interviews were conducted with participants of Dutch, Moroccan and Turkish ethnic origins with long COVID living in the Netherlands. Participants were men and women aged 30 years and above.
Guided by the concepts of stigma and candidacy, the findings are structured according to the broader themes of stigma and access to care. The findings show that people with long COVID suffer self and public stigma resulting from the debilitating illness and symptoms. Especially among Turkish and Moroccan ethnic minority participants, strong filial obligations and gendered expectations of responsibility and support within their communities further worsen self-stigma. This experience of stigma persisted within healthcare where lack of information and appropriate care pathways led to feelings of frustration and abandonment, especially for participants with pre-existing health conditions which further complicate candidacy. Under the access to healthcare theme, the findings show multiple challenges in accessing healthcare for long COVID due to several multifaceted factors related to the various stages of candidacy which impacted access to care. Particularly for Turkish and Moroccan ethnic minority participants, additional challenges resulting from limited access to information, pre-existing structural challenges and experience of stereotyping based on ethnicity or assumed migrant identity by health professionals further complicate access to health information and long COVID care.
The findings call for urgent attention and research to identify and coordinate healthcare for long COVID. There is also a need for accessible, informative and tailored support systems to facilitate patients’ access to information and care pathways for long COVID. Providing tailored information and support, addressing the various barriers that hinder optimal operating conditions in healthcare and leveraging on social networks is crucial for addressing stigma and facilitating candidacy for persons with long COVID towards improving access to care.
by Deborah Goldschmidt, Mark E. Bensink, Zheng-Yi Zhou, Sherry Shi, Yilu Lin, Lizheng Shi
IntroductionFocal segmental glomerulosclerosis (FSGS) is a rare glomerular disease that can lead to reduced kidney function and kidney failure (KF). The objective of this study was to describe the epidemiology, characteristics, clinical outcomes, healthcare resource utilization, and costs associated with focal segmental glomerulosclerosis (FSGS) in United States (US) veterans.
MethodsThis retrospective cohort study included patients in the National Veterans Affairs Health Care Network with ≥2 FSGS-associated diagnostic codes that were 30–180 days apart (October 1999–February 2021). Annual FSGS incidence and prevalence per 1,000,000 US veterans were calculated. Patient and disease characteristics as of the index date (date of first FSGS diagnosis) and baseline (6-months pre-index) comorbidities were described. Kaplan-Meier analyses were used to assess overall survival and time from index to KF or death, dialysis, and kidney transplant. Post-index medication use, HRU, and direct healthcare costs were summarized.
ResultsThe study included 2,515 veterans with FSGS who were followed for an average of 8.9 years. The mean age was 57.5 years, most patients were male (94.6%), and the most common comorbidity was hypertension (87.0%). The mean annual incidence and prevalence of FSGS during 2000–2020 were 19.6 and 164.7 per million veterans, respectively. Approximately half (51.5%) died during follow-up (median time: 11.6 years) and 76.9% had kidney failure (4.1 years). Overall, 43.3% underwent dialysis and 5.8% had a kidney transplant. During follow-up, statins and calcium channel blockers were commonly used (81.9% and 75.1%). During the first year post-index, 40% had an inpatient admission and 33% visited the emergency room; mean total healthcare cost per patient in the analysis was $36,543.
ConclusionsAmong US veterans, FSGS is associated with considerable clinical and economic burdens. Better treatments for FSGS are needed to slow kidney disease progression, improve patient outcomes, and reduce the burden.
by Ashwini Arunachalam, Sneha Sura, John Murphy, Paul Conkling, Jerome Goldschmidt
BackgroundIn 2018, the treatment options for unresectable stage III non-small cell lung cancer (NSCLC) changed with durvalumab, an immune checkpoint inhibitor (ICI), which was approved for consolidation therapy following concurrent chemoradiotherapy (cCRT) without disease progression. Despite durvalumab’s clinical benefit, many patients receiving this therapy developed progression. This study evaluated treatment patterns and clinical outcomes in real-world community oncology practices for patients with unresectable stage III NSCLC who received cCRT.
MethodsThis study used The US Oncology Network’s (iKnowMed) electronic health record database supplemented by chart review and included adults diagnosed with unresectable stage III NSCLC initiating cCRT between 11/01/2017 and 10/31/2019, with follow-up through 04/30/2022. cCRT included concurrent treatment with platinum-based chemotherapy and radiation therapy (+/-14 days). Real-world overall survival (rwOS) and real-world progression-free survival (rwPFS) were estimated from cCRT initiation using the Kaplan–Meier method.
ResultsAmong 426 patients, 61.5% received durvalumab post-cCRT (cCRT+durvalumab) and 38.5% did not (cCRT alone). Death (28.3%) and disease progression (22.2%) were the most common reasons for not initiating durvalumab. The median age for the cCRT+durvalumab and cCRT alone cohorts were 70 and 71 years, and 71.8% and 61.6% had Eastern Cooperative Oncology Group performance status of 0–1, respectively. 51.5% of cCRT+durvalumab discontinued durvalumab, primarily due to adverse events (35.8%) and disease progression (28.4%). Median rwOS was 50.2 (95% confidence interval [CI]:41.4, not reached) and 11.6 (95% CI:6.5,15.9) months for cCRT+durvalumab and cCRT alone, respectively. Median rwPFS was 28.5 (95% CI:23.3,36.4) months for cCRT+durvalumab and 6.3 (95% CI:4.3,9.3) months for cCRT alone, respectively. 23.7% (cCRT+durvalumab) and 26.2% (cCRT alone) received subsequent treatment, of which, 59.7% (cCRT+durvalumab) and 46.5% (cCRT alone) received ICI.
ConclusionFour out of ten patients did not receive consolidation durvalumab mainly due to disease progression. Even among patients who initiated durvalumab, many patients relapsed and were retreated with ICIs. These findings underscore the need to refine treatment strategies for better outcomes in stage III unresectable NSCLC.
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