62   WITS SPECIAL EDITION JOurNAL 2013

Research

Article

PAEDIATRIC HIV - 
LOOKING BEYOND CD4 COUNTS

Correspondence Author:
Joanne Potterton PhD
Department of Physiotherapy,
Faculty of Health Sciences,
University of the Witwatersrand,
7 York Road
Parktown 2193
Johannesburg, South Africa
Email: Joanne.potterton@wits.ac.za

ABSTRACT: Paediatric HIV remains a significant health and social chal-
lenge in sub-Saharan Africa despite many countries gaining improved  
access to antiretroviral treatment. Paediatric HIV affects multiple body 
systems and has the potential to cause wide ranging impairments as well as 
activity and participation limitations. The aim of this paper is to highlight 
some of the impairments that remain, despite the children having access to 
better medical care, in order to establish a possible role for physiotherapists. 
Nine studies conducted through the department of physiotherapy at the 
University of the Witwatersrand, South Africa are presented. The results 
of these studies demonstrate the neurodevelopmental, musculoskeletal, 
respiratory and quality of life challenges which children infected with 
HIV as well as their caregivers continue to face. The need for long term, 
multidisciplinary follow up of children infected with HIV is emphasized. 

KEY WORDS:  HIV, PAEDIATRIC, NEURODEVELOPMENT, QUALITY OF LIFE, IMPAIRMENTS, RESPIRATORY, 
MUSCULOSKELETAL

Potterton J, PhD1; 

Hilburn N, PhD1;

Stewart A, PhD1;

Humphries C, 

MSc Physiotherapy1
 

 1 Department of Physiotherapy, 
  Faculty of Health Sciences, 
  University of the Witwatersrand.

INTRODUCTION
Over 80% of the world’s HIV infected 
children live in sub­Saharan Africa. 
South Africa is the country which has 
the highest number of HIV infected 
children in the world (UNAIDS, 2011). 
Antiretroviral therapy has been available 
to children in South Africa since 2004. 
Despite improved access to antiretro­
viral therapy paediatric HIV remains a 
significant health and social challenge in 
South Africa as well as other countries in 
sub­Saharan Africa (Hilburn et al, 2010).

Initiation of antiretroviral therapy 
has been found to reduce mortality and 
morbidity in young children significantly 
(Violari et al, 2008). Many developing 
countries still have strict criteria for 

studies conducted by the physiotherapy 
department of the University of the 
Witwatersrand.

The results of nine separate studies 
conducted in Southern Africa over a 
period of nine years (2004­2012) will 
be presented. The methods of the stu­
dies have been described elsewhere and 
will be briefly outlined. A total of 673 
children participated in these studies. 
All children were under the age of eight 
years and were attending paediatric 
HIV clinics. Consecutive sampling of 
children who met the inclusion criteria 
for each study was used. Caregivers 
gave informed consent for their children 
to participate in the study and children 
over four years of age gave assent. 
Ethical clearance for each of the studies 
was obtained from the Human Research 
Ethics Committee of the University of 
the Witwatersrand. Outcome measures 
chosen for these studies were valid 
and reliable and were appropriately 
translated where necessary.

Demographic and anthropometric data 
were collected in all the studies and the 
children’s CD4 counts and viral loads 
were recorded.

initiating antiretroviral therapy if it is 
available at all. This means that children 
are often severely immunocompromised 
before starting treatment and may pre­
sent with irreversible impairments 
(Potterton et al, 2010).

Good outcome in children infected 
with HIV is often equated with an 
improved CD4 count and decreased 
mortality rates (Violari et al, 2008).  
Few studies have looked beyond this 
clinical marker to establish what the 
health concerns of children infected with 
HIV are, as they live longer, relatively 
more healthy lives.

In addition limited research has been 
done on the rehabilitation needs of 
children infected with HIV. HIV affects 
multiple body systems in children as 
in adults, and so a broad spectrum of 
impairments is anticipated. The aim of 
this paper is to highlight some of the 
impairments as well as the limitations in 
activity and participation which remain 
despite children achieving acceptable 
CD4 counts. Parenting stress of care­
givers and quality of life of children 
infected with HIV will also be presented. 
This paper will provide an overview of 



63   WITS SPECIAL EDITION JOurNAL 2013 

In 2011 two studies were conducted 
to compare the development of infants 
diagnosed with HIV to that of age 
matched HIV exposed but uninfected 
infants. The longitudinal study conducted 
in South Africa (n=56) found that the 
HIV infected infants were significantly 
delayed in all aspects of development 
when compared to the HIV exposed 
but uninfected group. The development 
of these infants was followed up for 
six months after initiating HAART, 
the infected group remained delayed  
despite starting HAART at a very early 
age (4.87 months ±2.8) (Whitehead et 
al, 2013). The group of infants assessed 
in a cohort study in Zimbabwe (n=60) 
showed similar results with the HIV 
infected infants faring significantly 
worse in all facets of development 
than the exposed uninfected infants 
(Hutchings and Potterton, 2013).

MUSCULOSKELETAL IMPAIRMENT

Background
Myopathy and muscle weakness in 
HIV infected adults has been described 
(O’Brien et al, 2008), however very little 
research has been done on the muscle 
strength of children infected with HIV. 
It has been hypothesized that  HIV may 
cause reduced muscle strength which 
then has the effect of delaying gross 
motor function (Baillieu & Potterton, 
2008). HIV is associated with protein 
malabsorption, loss of body protein 
and abnormal protein metabolism (Hsu 
et al, 2005).  These protein metabolism 
problems can also lead to decreased 
muscle bulk which may affect muscle 
strength (O’Brien et al, 2008).  

Another factor that could cause 
muscle weakness in children infected 
with HIV is undiagnosed, asymptomatic 
myopathy.  Myopathy may be present in 
children infected with HIV as it has been 
shown to exist in adults infected with 
HIV (O’Brian et al, 2008).   

Study Findings
Thirty two children between the ages 
of four and eight years of age had their 
muscle strength tested.  Eight muscle 
groups were tested bilaterally using a 
MicroFET 2 hand­held dynamometer. 
The muscles tested included flexors and 
abductors of the shoulders, and flexors 

NEUROLOGICAL IMPAIRMENTS 

Background
HIV encephalopathy in children has 
been well described and the impact 
of HIV on the developing nervous 
system continues to be studied. HIV 
encephalopathy has been found to cause 
developmental delay in all facets of 
development with cognitive, language 
and motor delays being reported 
(Baillieu and Potterton, 2008). The 
prevalence of neurodevelopmental delay 
may be as high as 60% (Bailleu and 
Potterton, 2008). 

Studies on neurodevelopment in 
HIV­infected children in Africa have 
revealed that a large proportion of 
children have moderate to severe delay 
in cognitive, motor, and language 
development, and that gross motor 
development is most severely affected. 
The severity of the encephalopathy may 
be dependent on a number of factors. 
The timing of infection, advanced stage 
of maternal disease at delivery, rapid 
disease progression with early immune 
suppression, and high plasma viral 
load in infancy have been identified as 
factors which predispose an infant to 
developing encephalopathy.  The effects 
of timely initiation of antiretroviral 
therapy on alleviating the impact of 
encephalopathy have been described 
(Hilburn et al, 2010).

Study Findings
A single blinded randomized controlled 
trial conducted in Soweto, South Africa 
in 2004 found that 122 young children 
infected with HIV were severely delayed 
in both cognitive and motor develop­
ment. The children were assessed with 
the Bayley Scales of Infant Develop­
ment ll. The Bayley Scales has been 
normed on South African children 
(Richter et al, 1992). Healthy South 
African children from rural and urban 
communities score well within the 
normal ranges of this test.

Seventy two percent of the children 
presented with severe motor delay and 
52% presented with severe cognitive 
delay (Potterton et al, 2010). The mean 
CD4 count for the children in this study 
was only 14.35%. The majority of the 
children (85%) were antiretroviral naïve. 
In a subsequent cohort study conducted 

in Soweto, South Africa (Hilburn et al, 
2011) the majority of children (68%) 
were already receiving HAART when 
they were assessed. Their CD4 counts 
were significantly higher (23.16%) than 
the children assessed in 2004 yet despite 
this the children still presented with 
delayed development across all facets of 
development (Hilburn et al, 2011).

The results of the above studies are 
supported by a non randomized cohort 
study which was conducted in Kenya in 
2007. This study followed up 36 infants 
under 30 months of age for at least six 
months after starting HAART. In this 
study 83.3% of the children had motor 
delay and 61.2% had cognitive delay 
(Kigira M, 2007). Almost 80% of the 
children in this sample had CD4 count 
below 20%.

In a single blinded, randomised 
controlled trial conducted in South Africa 
it was found that the implementation of 
a basic home stimulation programme 
which was taught to the caregivers 
resulted in significant improvements 
in the cognitive (MDI 62.6% to 
69.3%; p=0.01) and motor (49.8% to 
70.5%;p=0.02) development of young 
children infected with HIV (Potterton 
et al, 2010). The children’s CD4 counts 
improved significantly (14.2% to 21.9%; 
p=0.00) over the course of the study 
as more children gained access to 
antiretrovirals. The mean CD4 percen­
tage at the end of the study was not 
optimal and many of the children were 
still immunocompromised (Potterton et 
al, 2010). Despite the improvements in 
motor and cognitive scores the children 
still presented with developmental delays  
in all facets of development at the end of 
the study period.

Many of the children in the above 
study started HAART after enrolling in 
the study. For this group of chil dren it 
was found that although their motor 
development improved significantly 
(PDI 49.69 to 63.64; p=0.04), their cog­
nitive development did not (MDI 66.44 
to 65.64;p=0.77). This is postulated to 
be due to the fact that irreversible brain 
damage had already occurred. Despite 
some improvement being found in motor 
development the children still presented 
with developmental scores well below 
normal despite having received HAART 
(Potterton et al, 2010).



64   WITS SPECIAL EDITION JOurNAL 2013

and extensors of the elbows, hips and 
knees. This pilot study was a descriptive 
cohort study.

The children presented with muscle 
strength of 50% of the expected norm 
for their ages. A decrease in CD4 count 
correlated to a decrease in muscle 
strength (r>0.5), but muscle strength did 
not automatically improve when children 
started HAART and the other clinical 
parameters improved. Participants 
in this study were from families of 
low socio­economic status and their 
heights and weights were significantly 
below the norm for their age (p<0.001) 
(Humphries, 2011). 

RESPIRATORY IMPAIRMENT

Background
Respiratory disease is a major cause 
of morbidity and mortality in children 
infected with HIV (Zar, 2008). Ninety 
percent of children infected with HIV 
will develop a respiratory illness some­
time during the course of their HIV 
infection (Zar and Mulholland, 2003). 
Pneumocystis jerovecii pneumonia is 
by far the most common opportunistic 
infection seen in children infected with 
HIV. Cytomegalovirus, mycobacterium 
avium complex and pulmonary tuber­
culosis are also opportunistic infections 
that are frequently seen. 

Pulmonary infection may become 
chronic as evident in the large number 
of children who present with secondary 
bronchiectasis. This is more marked  
in those with lymphoid interstitial  
pneumonitis, recurrent bacterial pneu­
monia and unresolved pneumonia 
(Sheikh et al, 1997).

Study Findings
One hundred and twenty five children 
infected with HIV who were hospitalised 
were assessed to determine the burden of 
respiratory disease in this observational 
study. The burden of disease was based 
on the clinical diagnosis recorded in  
the child’s file. The mean age of the 
chil dren was 20.5 months (±23.6). Indi­
cations for chest physiotherapy were 
also determined.

The burden of respiratory disease 
in this sample of hospitalized children 
under the age of eight years was high, 
with 68.8% presenting with two or 

more respiratory diagnoses. The most 
common clinical diagnoses were 
bacterial pneumonia (66.4%), tubercu­
losis (48%) and pneumocystis jirovecii 
pneumonia (23.3%). A large proportion 
(90%) of the children had indications for 
chest physiotherapy, namely excessive 
retained secretions and/or decreased 
air entry, however very few of the 
children had been referred for chest 
physiotherapy. Just over 40% of the 
children were receiving antiretroviral 
therapy with the average length of 
use 9.81 months (±11.61). The mean  
length of hospital stay was 18.76 days 
(±19.19). The mean CD4 count was low 
at 17.33% (±10.96) (Da Cunha, 2011).

QUALITY OF LIFE

Background 
Paediatric HIV is a multigenerational 
disease. The diagnosis of the child as 
being HIV positive almost invariably 
means the mother is positive too and 
possibly the father as well. This sets 
HIV apart from other chronic diseases 
of childhood. Families affected by HIV 
are often poor and have limited access 
to quality healthcare (Potterton, 2007). 
These families may experience multi­
ple losses that add to the psychosocial 
distress experienced by the family.  Pae­
diatric HIV therefore has the potential 
to negatively affect the quality of life of 
the children themselves as well as their 
caregivers.

Study Findings
The Parenting Stress Index (Short 
Form) was used to assess parenting 
stress levels of the caregivers of young 
chil dren, under two and a half years 
of age infected with HIV who were 
enrolled in a randomized controlled 
trial.  Parenting stress of the caregivers 
of children infected with HIV increased 
significantly as their children started 
antiretroviral therapy (p=0.01) despite 
the fact that the children’s CD4 counts 
improved indicating improved health 
status (Potterton et al, 2007). Overall the 
parenting stress levels of the caregivers 
was extremely high with PSI (SF) levels 
of over 100 where a score of 90 or  
above is considered to indicate the need 
for clinical intervention (Abidin, 1995).

In a separate cohort study 45 children 

infected with HIV and 45 healthy, 
age­matched controls completed the 
PedsQL. All the children were between 
six and seven years old and were in 
grade one. The children infected with 
HIV were all on antiretroviral therapy 
and had CD4 counts of over 25%. They 
were clinically well (Goldberg, 2010).

The children infected with HIV had 
significantly lower PedsQL scores 
than their healthy peers (p=0.00), 
despite having CD4 counts of over 
25%. There were differences in all the 
domains measured by the PedsQL, 
namely Physical, Emotional, Social and 
School Functioning. The most signi­
ficant difference was in the Physical 
Functioning domain (p<0.01).

DISCUSSION
The studies presented above show 
that despite children gaining access to 
antiretroviral therapy a number still 
present with significant impairments that 
potentially result in limitations in activity 
and participation. These children will 
potentially benefit from rehabilitation.

The impact of HIV on the developing 
central nervous system has been well 
documented. However there is an 
assumption that as children get better 
access to antiretroviral therapy the 
neurological complications will cease  
to be a significant clinical concern 
(Kigira M,2007). This has not been 
the case in Southern Africa. HIV is 
neurotrophic and crosses the immature 
blood brain barrier easily, neurologic 
involvement is therefore possible early 
on in the disease progression. At the end 
of 2010 antiretroviral therapy became 
available to all HIV infected children 
in South Africa below one year of age, 
regardless of what their CD4 counts are. 
Despite the fact that infants are gain­
ing access to HAART so much earlier 
they are still presenting with moderate 
develop mental delay as early as four 
months of age (Whitehead et al, 2013; 
Hutchings and Potterton, 2013).

The decreased muscle strength 
measured in young children could be 
related directly to the effects of the HI 
virus on the muscular system. Although 
very few studies have been done on 
children (Ramos et al, 2012), data from 
adult studies show that HIV can lead 
to a clinical myopathy (O’Brian et al, 



65   WITS SPECIAL EDITION JOurNAL 2013 

2008). Prolonged illness and frequent 
hospitalization may lead to disuse 
atrophy (Humphries C, 2009). The 
children in this study were underweight. 
Decreased muscle strength may also 
be due to the fact that the children had 
decreased muscle mass as a result of 
protein malnutrition (O’Brian et al, 
2008). Further research is required in 
this field. There is a need to establish 
age specific norms for muscle strength 
of South African children.

Quality of life in children infected 
with HIV may be affected by a number 
of factors, both clinical and social. The 
control group used in the study presented 
came from a similar socio­economic 
background to the group of children 
infected with HIV. The differences in 
quality of life between the two groups 
can therefore be attributed to the HIV 
infection (Goldberg, 2010).

Parenting stress has been shown to 
be high for caregivers of children with 
chronic diseases and HIV has proven to 
be no exception. The multigenerational 
aspect of HIV sets it apart from most 
other chronic childhood disabilities. 
The mothers in this study had to deal 
with their own diagnosis, ill health and 
stigma as well as care for their children. 
Extreme poverty and lack of social 
support exacerbated their stress levels 
(Potterton et al, 2007).

The high burden of respiratory disease 
observed in the hospitalised children 
infected with HIV is of concern. The 
conditions with which the children 
presented are not very different from 
those seen in HIV uninfected children 
(Graham, 2003) with the exception of 
PJP and the high incidence of TB. The 
fact that children present involvement of 
multiple body systems means that their 
disease course is complicated. Further 
studies are required to determine whether 
or not physiotherapy can have an impact 
on the clinical outcome of these children. 
Of particular concern are the children 
who have chronic respiratory conditions 
which may impact on endurance and 
muscle strength as well as directly on 
the respiratory system. Children with 
bronchiectasis and lymphoid interstitial 
pneumonitis will potentially benefit from 
long term physiotherapy management 
on an out­patient basis. Further research 
into the effect of physiotherapy in the 

management of HIV infected children 
with different respiratory pathologies  
is required.

CONCLUSION
This review provides a brief overview 
of the diverse and complex effects of 
HIV infection on young children. It is 
beyond the scope of this paper to give 
detailed or specific results and analysis 
in this limited format. The relevance 
of paediatric HIV for South African 
physiotherapists is of essence.

Placing children on antiretroviral 
therapy does improve many of their 
health parameters. An improved CD4 
count and a decreased viral load do not 
always lead to an improvement in all 
facets of a child’s health and well­being. 
The children in the abovementioned 
studies presented with developmental 
delay, muscle weakness, decreased 
quality of life and a high burden of 
respiratory disease despite having access 
to antiretroviral therapy.

Physiotherapists need to continue 
to be involved in the long term 
management of children infected with 
HIV, despite more children gaining 
access to antiretroviral therapy. Detailed 
multi­system assessments of all children 
infected with HIV are required. Holistic, 
appropriate intervention programmes, 
that meet the needs of the children and 
their caregivers, need to be developed 
and tested.

Paediatric HIV is a global problem  
that will affect children around the 
world for many years to come. Small 
pockets of success should not lead to 
professional apathy. 

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