A qualitative study of patient, caregiver, doctor and nurse views of factors influencing lumbar puncture uptake in Zambia

Elafros, Melissa A.; Belessiotis-Richards, Clara; Birbeck, Gretchen L.; Bond, Virginia; Sikazwe, Izukanji; Kvalsund, Michelle

doi:10.1093/trstmh/trab124

Cited by 5 publications

(6 citation statements)

References 20 publications

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“…The poor uptake of LP in the region has previously been described in PLWHIV with new‐onset seizure in Zambia 26 . This issue is increasingly recognized and appears to be a multifactorial problem warranting further study 29‐31 . In the context of this study, the constrained diagnostic data negatively impacted the identification of seizure etiology and cause of death and may have contributed to the high 30‐day mortality.…”

Section: Discussionmentioning

confidence: 81%

“…26 This issue is increasingly recognized and appears to be a multifactorial problem warranting further study. [29][30][31] In the context of this study, the constrained diagnostic data negatively impacted the identification of seizure etiology and cause of death and may have contributed to the high 30-day mortality. Nonetheless, diagnostic data in this cohort are likely more extensive than are usually available.…”

Section: Discussionmentioning

confidence: 99%

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Clinical characteristics and outcomes after new‐onset seizure among Zambian children with HIV during the antiretroviral therapy era

et al. 2022

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Objective This study describes clinical profiles including human immunodeficiency virus (HIV) disease history and seizure etiology among children living with HIV presenting with new‐onset seizure during the era of antiretroviral therapy (ART) in Zambia. 30‐day mortality and cause of death are also reported. Methods Children living with HIV (CLWHIV) with new‐onset seizures were prospectively evaluated at one large urban teaching hospital and two non‐urban healthcare facilities. Interviews with family members, review of medical records, and where needed, verbal autopsies were undertaken. Two clinicians who were not responsible for the patients' care independently reviewed all records and assigned seizure etiology and cause of death with adjudication as needed. Results From April 2016 to June 2019, 73 children (49 urban, 24 rural) were identified. Median age was 6 years (IQR 2.2‐10.0) and 39 (53%) were male children. Seizures were focal in 36 (49%) and were often severe, with 37% presenting with multiple recurrent seizures in the 24 hours before admission or in status epilepticus. Although 36 (49%) were on ART at enrollment, only 7 of 36 (19%) were virally suppressed. Seizure etiologies were infectious in over half (54%), with HIV encephalitis, bacterial meningitis, and tuberculous meningitis being the most common. Metabolic causes (19%) included renal failure and hypoglycemia. Structural lesions identified on imaging accounted for 10% of etiologies and included stroke and non‐accidental trauma. No etiology could be identified in 12 (16%) children, most of whom died before the completion of clinical investigations. Twenty‐two (30%) children died within 30 days of the index seizure. Significance Despite widespread ART roll out in Zambia, new‐onset seizure in CLWHIV occurs in the setting of advanced, active HIV disease. Seizure severity/burden is high as is early mortality. Enhanced programs to assure early ART initiation, improve adherence, and address ART failure are needed to reduce the burden of neurological injury and premature death in CLWHIV.

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Section: Discussionmentioning

confidence: 81%

Section: Discussionmentioning

confidence: 99%

Clinical characteristics and outcomes after new‐onset seizure among Zambian children with HIV during the antiretroviral therapy era

et al. 2022

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“…These findings are consistent with reports from urban Lusaka conducted in the context of a study of the meningitis care cascade. 30 The methods undertaken here further allowed us to develop a broader perspective on patient/ proxy barriers, including common inaccurate beliefs held by caregivers, core trust issues, the role of peer pressure even within the inpatient setting, stigma's role in the Tap Gap, and the ubiquitous fears held by patient caregivers and clinicians. There was almost universal fear that consenting for an LP and/or completing one would result in being blamed by others for bad patient outcomes with detrimental personal and professional effects.…”

Section: Discussionmentioning

confidence: 99%

“…Delays in care seeking, although not directly addressed in this study, undoubtedly result in higher disease severity at presentation and have been previously reported. 30 In turn, more severe disease may lead to greater clinician concerns regarding overall poor outcomes and the potential for being blamed for such outcomes if an LP is completed. Delays in seeking care and providing consent are both a barrier to LP completion and a contributing factor to the magnitude of other barriers.…”

Section: Discussionmentioning

confidence: 99%

Patient, Provider, and Health Systems Factors Leading to Lumbar Puncture Nonperformance in Zambia: A Qualitative Investigation of the “Tap Gap”

Saylor

Elafros

Bearden

et al. 2023

The American Journal of Tropical Medicine and Hygiene

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Lumbar puncture (LP) and cerebrospinal fluid (CSF) diagnostics are critical for evaluating central nervous system infections but are often not conducted, resulting in the “Tap Gap.” To investigate patient, provider, and health systems factors contributing to the Tap Gap in Zambia, we conducted focus group discussions with adult caregivers of hospitalized inpatients and in-depth interviews with nurses, clinicians, pharmacy workers, and laboratory staff. Transcripts were independently thematically categorized by two investigators using inductive coding. We identified seven patient-related factors: 1) alternative understandings of CSF; 2) alternative information about LPs, including misinformation; 3) mistrust of doctors; 4) consent delays; 5) fear of blame; 6) peer pressure against consent; and 7) association between LP and stigmatized conditions. Four clinician-related factors were identified: 1) limited LP knowledge and expertise, 2) time constraints, 3) delays in LP requests by clinicians, and 4) fear of blame for bad outcomes. Finally, five health systems-related factors were identified: 1) supply shortages, 2) constrained access to neuroimaging, 3) laboratory factors, 4) availability of antimicrobial medications, and 5) cost barriers. Efforts to improve LP uptake must incorporate interventions to increase patient/proxy willingness to consent and improve clinician LP competencies while addressing both upstream and downstream health system factors. Key upstream factors include inconsistently available consumables for performing LPs and lack of neuroimaging. Critical downstream factors include laboratory services that offer poor availability, reliability, and/or timeliness of CSF diagnostics and the reality that medications needed to treat diagnosed infections are often unavailable unless the family has resources to purchase privately.

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“…Refrigerating samples is not sufficient; they must be frozen at sub-zero temperatures, creating another barrier to the accessibility of the testing method in endemic areas ( Teunissen et al., 2009 ). Moreover, cultural acceptance of lumbar puncture remains limited in some endemic areas, and represents a major hurdle to obtain CSF ( Thakur et al., 2015 ; Elafros et al., 2022 ). However, serum/plasma tau levels may be a viable alternative to CSF levels.…”

Section: Biomarkersmentioning

confidence: 99%

Diagnosis of cerebral malaria: Tools to reduce Plasmodium falciparum associated mortality

Muppidi

Wright²,

Wassmer³

et al. 2023

Front. Cell. Infect. Microbiol.

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Cerebral malaria (CM) is a major cause of mortality in Plasmodium falciparum (Pf) infection and is associated with the sequestration of parasitised erythrocytes in the microvasculature of the host’s vital organs. Prompt diagnosis and treatment are key to a positive outcome in CM. However, current diagnostic tools remain inadequate to assess the degree of brain dysfunction associated with CM before the window for effective treatment closes. Several host and parasite factor-based biomarkers have been suggested as rapid diagnostic tools with potential for early CM diagnosis, however, no specific biomarker signature has been validated. Here, we provide an updated review on promising CM biomarker candidates and evaluate their applicability as point-of-care tools in malaria-endemic areas.

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A qualitative study of patient, caregiver, doctor and nurse views of factors influencing lumbar puncture uptake in Zambia

Cited by 5 publications

References 20 publications

Clinical characteristics and outcomes after new‐onset seizure among Zambian children with HIV during the antiretroviral therapy era

Clinical characteristics and outcomes after new‐onset seizure among Zambian children with HIV during the antiretroviral therapy era

Patient, Provider, and Health Systems Factors Leading to Lumbar Puncture Nonperformance in Zambia: A Qualitative Investigation of the “Tap Gap”

Diagnosis of cerebral malaria: Tools to reduce Plasmodium falciparum associated mortality

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