An investigation of HIV sensory neuropathy in children living with HIV
Benjamin-Damons, Natalie Alice
Prevalence of HIV-SN The global estimate of people living with human immunodeficiency virus (HIV) in 2016 was 36.7 million, including 2.1 million children (<15 years). Sub-Saharan Africa accounts for 64% of the world’s population living with HIV, including 19.4 million adults and children in Southern and Eastern Africa. In South Africa, 7.1 million are reported to be living with HIV, with an estimated 360,000 children (0-14 years). The profile of HIV has changed since the advent of ART which revolutionised the treatment of HIV and significantly lessened mortality and opportunistic infections. To date, South Africa has the largest ART programme in the world with a steady reduction in the thresholds for initiating therapy since 2004. HIV-SN is a common co-morbidity in the adult population. There is a dearth of literature on the prevalence of HIV-SN in children. Until recently it was thought that HIV-SN did not develop in HIV infected children or that only a small percentage is affected by it. The most recognised form is distal sensory or axonal neuropathy, which is directly related to infection and often compounded by anti-retroviral therapy. Parasthesiae and pain are the most common presenting complaints, followed by weakness or loss of motor milestones. Studies on HIV-related peripheral neuropathy, its impact on function and mobility as well as management, have been focused on the adult population. The main aim of the study was therefore to determine what the current frequency rates of HIV-SN are in the paediatric population as well as how it impacts on their gross motor function and overall quality of life. Further to this we aimed to design and test an intervention programme to address any gross motor issues that may be present. Methods Study one: A cross-sectional study was conducted to ascertain the frequency of HIV-SN in children infected with HIV, who attend Rahima Moosa Mother and Child Hospital, Johannesburg, South Africa. After obtaining informed consent from the caregivers and assent from the children, participants were assessed for HIV-SN using the Brief Peripheral Neuropathy Screen (BPNS) and pin-prick sensation. We defined HIV-SN as the presence of at least one bilateral sign. Gross motor function was assessed using the Movement-ABC-2® (M- ABC-2®). The M-ABC-2® assesses a child’s performance in balancing, throwing, and manual dexterity tasks, benchmarked against age-appropriate norms. Basic demographic, anthropomorphic, and most recent HIV disease information was obtained from the children’s medical files. The Pediatric Quality of Life Questionnaire was administered and assesses the parents and child’s perception of their current quality of life in the following domains: physical functioning; emotional functioning; social functioning and school functioning Study two: Part one: A literature review was conducted to determine existing evidence for the management of peripheral neuropathies irrespective of the cause. Details were summarised and used to substantiate exercise selection as determined by the Delphi survey. Pat two: A Delphi Survey was conducted to determine the current physiotherapy management practices for HIV-SN. A total of eight physiotherapists participated in the Delphi survey. Two rounds were sufficient to reach consensus on the intervention programme that was designed for Study three. Study three: A case series design was used to test the intervention as the sample was too small to conduct a randomised control trial. Twenty-eight participants agreed to do the exercise programme. Baseline assessments of the BPNS, M-ABC-2® and the PedsQL™ were done and repeated at the end of the intervention period. Results Study one HIV-SN frequency: A total of 135 participants between the ages of four to ten years were assessed. Fifty three percent were male. The mean age was six years (SD ±1). Statistical analysis revealed a frequency rate of 25.9% for HIV-SN. The most common presenting symptom was pain No associated risk factors for developing the condition could be isolated. Gross motor function Of those who presented with SN, 23% participants fell into the Red category for gross motor function, which indicates poor motor function. The remainder were 39% and 48% in the Amber and Green categories respectively. However, there was no association between having SN and any of the sub-scales of the M-ABC-2® or the summative traffic light categories. Quality of life Almost all participants in the study reported a satisfactory quality of life. There was also no correlation between quality of life and neuropathy status nor gross motor function and neuropathy status. Study two This study interrogated existing literature for treatment strategies used in the management of neuropathy irrespective of the cause. Following the review, very few randomised controlled trials were available to assess. Literature reviews of trials provided more information. The most common intervention strategies identified were exercise, functional electrical stimulation and pharmacotherapeutics. In the Delphi survey, strategies with the highest consensus were exercise, education of the child and caregiver as well as referral to both an occupational therapist and/or a psychologist. The types of exercise with the most consensus were proprioception, balance and strengthening, followed by circulatory, weight-bearing and endurance exercise. The least popular selection was stretching. Most of the choices were based on clinical experience rather than research evidence, with only two participants consistently citing this as the reason for their selection. Education of the child and caregiver was a consistent selection with very high consensus. An intervention programme and information booklet were designed based on the outcome of the literature and the Delphi survey results and tested in study three. Study three Twenty-eight participants were enrolled in the intervention study. At baseline 12 participants tested positive for HIV-SN, which is 51.8 % frequency and at the final assessment seven participants tested positive which is a frequency of 36.8 %. There was an overall decrease in the reporting of symptoms such as pain, hot, cold and pins and needles. There was a significant decrease in the presence of decreased vibration sense on the right between periods one (start of the intervention) and three (end of the intervention) where p = 0.021. There was a statistically significant change in the balance score between periods one (start of the intervention) and two (mid-way through intervention) where p = 0.044. When looking at the zoning of Green, Amber and Red, there was an overall improvement of 30% in motor ability. The overall test score showed a statistically significance between period one and two (p ˂ 0.001) as well as between period one and three (p = 0.023). For the PedsQL™ values remained relatively unchanged and could not be assessed for significance. Conclusion A high frequency rate of HIV-SN was identified in this study, with most being asymptomatic but had experienced pain at some point in the past. Of these children with HIV-SN, a large number presented with gross motor limitations as identified by the M-ABC-2®, but they all reported a relatively satisfactory quality of life. A well designed intervention can improve the signs and symptoms associated with HIV-SN when administered over a six week period. After this, the participants plateaued but did not return to their baseline level of function. Recommendation Children living with HIV should be routinely assessed for the presence of HIV-SN, education of the child and the caregiver is essential in managing the condition effectively and timeously. Further research assessing management strategies for HIV-SN is needed.
Thesis submitted to the Faculty of Health Sciences; University of the Witwatersrand, Johannesburg, in fulfilment of the requirements for the degree of Doctor of Philosophy Johannesburg 2019