Lumbar puncture refusal in sub-Saharan Africa: A call for further understanding and intervention

Thakur, Kiran T.; Mateyo, Kondwelani; Hachaambwa, Lottie; Kayamba, Violet; Mallewa, Macpherson; Mallewa, Jane; Nwazor, Ernest; Lawal, Tope; Mallum, Chindo B.; Atadzhanov, Masharip; Boulware, David R.; Birbeck, Gretchen L.; Siddiqi, Omar K.

doi:10.1212/wnl.0000000000001561

Cited by 68 publications

(70 citation statements)

References 9 publications

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“…Proportionally more African Americans referenced LP concerns as a reason for non-participation than Caucasians, and our anecdotal experience suggests that most fears are centered around pain, needles and paralysis rather than death or meningitis (Thakur et al, 2015). While TSUS was only directly referenced once as the primary reason for non-participation, it is possible that more African Americans reported personal LP fear or declined to provide a specific reason for non-participation rather than referencing TSUS outright.…”

Section: Discussionmentioning

confidence: 92%

Research Lumbar Punctures among African Americans and Caucasians: Perception Predicts Experience

Howell

Parker

Watts

et al. 2016

Front. Aging Neurosci.

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African Americans are under-represented in Alzheimer’s disease (AD)-related biomarker studies, and it has been speculated that mistrust plays a major factor in the recruitment of African Americans for studies involving invasive procedures such as the lumbar puncture (LP). We set out to determine factors associated with non-participation in a biomarker study aiming to explore cerebrospinal fluid (CSF) AD biomarker differences between older African Americans and Caucasians. We also surveyed participants’ procedure-related perception (a standard medical procedure vs. a frightening invasive procedure) and reluctance, as well as the rate and type of post-procedure discomfort and complications. Among 288 subjects approached for study participation, 145 (50.3%) refused participation with concerns over LP being the most commonly reported reason. Relatively more African Americans than Caucasians reported concerns over LP as the main reason for non-participation (46% vs. 25%, p = 0.03), but more African Americans also did not provide a specific reason for non-participation. Among those who completed study participation (including the LP), African Americans and Caucasians were similar in pre-LP perceptions and reluctance, as well as post-LP rates of discomfort or complication. Perceiving LP as a frightening invasive procedure, not race, is associated with increased likelihood of post-LP discomfort or complication (RR 6.2, 95% confidence interval 1.1–37.0). Our results indicate that LP is a well perceived procedure in a cohort of African American and Caucasian research participants, and is associated with few serious complications. The pre-procedure perception that the LP is a frightening invasive procedure significantly increases the risk of self-reported discomfort of complications, and African Americans may be more likely to turn down study participation because of the LP. Future studies will need to address factors associated with negative LP perceptions to further assure participants and reduce complication rates.

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Section: Discussionmentioning

confidence: 92%

Research Lumbar Punctures among African Americans and Caucasians: Perception Predicts Experience

Howell

Parker

Watts

et al. 2016

Front. Aging Neurosci.

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“…First, these estimates likely represent the lowest range of true cryptococcal meningitis incidence rates in Botswana due to the limitations of deriving incidence estimates from laboratory-based surveillance, including missing individuals who died before seeking medical care or who sought care but went undiagnosed due to misdiagnosis, stock out of lumbar puncture equipment or laboratory reagents, or lumbar puncture refusal [31]. Although we applied a rigorous approach to data collection and estimated incidence only for 2013-2014 when we believed laboratory data to be complete, missed case ascertainment may also have led to spuriously low incidence estimates.…”

Section: Referral Hospital Temporal Trendsmentioning

confidence: 99%

Advanced Human Immunodeficiency Virus Disease in Botswana Following Successful Antiretroviral Therapy Rollout: Incidence of and Temporal Trends in Cryptococcal Meningitis

Tenforde

Mokomane²,

Leeme³

et al. 2017

Clinical Infectious Diseases

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“…Therapeutic lumbar puncture is standard of care in cryptococcal meningitis, but the effect of lumbar puncture on seizures in this situation is unknown. 16 Twenty percent of patients had no identifiable etiology for their seizure. HIV alone is known to cause inflammation within the brain, 17,18 which may further predispose to or precipitate seizure activity.…”

mentioning

confidence: 99%

“…The representativeness of the CHASE study was limited by identification of etiology only among patients with CSF obtained. Public apprehension in Zambia about the safety of lumbar puncture limits its acceptance 16 and patients with a higher level of disability were more likely to provide CSF. 12 The PCR assays do not have perfect sensitivity so a negative assay does not guarantee the absence of infection.…”

mentioning

confidence: 99%

New-onset seizure in HIV-infected adult Zambians

et al. 2017

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Objective: To identify the etiology of new-onset seizure in HIV-infected Zambian adults and identify risk factors for seizure recurrence.Methods: A prospective cohort study enrolling HIV-infected adults with new-onset seizure within 2 weeks of index seizure obtained clinical, laboratory, and neuroimaging data to determine seizure etiology. Participants were followed to identify risk factors for seizure recurrence. Risk factors for mortality were examined as mortality rates were unexpectedly high.Results: Eighty-one patients with CSF for analysis were enrolled and followed for a median of 306 days (interquartile range 61-636). Most (91%) were at WHO stage III/IV and 66 (81%) had a preseizure Karnofsky score $50. Prolonged or multiple seizures occurred in 46 (57%), including 12 (15%) with status epilepticus. Seizure etiologies included CNS opportunistic infections (OI) in 21 (26%), hyponatremia in 23 (28%), and other infections in 8 (10%). OIs included Cryptococcus (17%), JC virus (7%) and 5% each for tuberculosis, cytomegalovirus, and varicella-zoster virus. No etiology could be identified in 16 (20%). Thirty (37%) patients died during follow-up and 20 (25%) had recurrent seizures with survival being the only identifiable risk factor. Seizures are common in the HIV-infected population, often occurring in the setting of advanced stages of immunosuppression.1 New-onset seizure has been reported in up to 11% of HIVinfected individuals, 2,3 but seizure recurrence risk and risks factors for epilepsy development in HIV-infected individuals with new-onset seizure have not been delineated. Most African regions with high HIV prevalence continue to rely largely on older, enzyme-inducing antiepileptic drugs (AEDs) for epilepsy management. Given the potential for drug interactions between enzymeinducing AEDs and combined antiretroviral therapy (cART), their co-usage is not recommended, 4,5 but other seizure treatment options are often limited or nonexistent. 6 Data on the risk of seizure recurrence in HIV-infected people with new-onset seizure are needed to help guide the decision whether or not to initiate AEDs, particularly given the risk of increased drug toxicity

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Lumbar puncture refusal in sub-Saharan Africa: A call for further understanding and intervention

Cited by 68 publications

References 9 publications

Research Lumbar Punctures among African Americans and Caucasians: Perception Predicts Experience

Research Lumbar Punctures among African Americans and Caucasians: Perception Predicts Experience

Advanced Human Immunodeficiency Virus Disease in Botswana Following Successful Antiretroviral Therapy Rollout: Incidence of and Temporal Trends in Cryptococcal Meningitis

New-onset seizure in HIV-infected adult Zambians

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