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Assessment of HIV-positive in-patients using the International Classification of Functioning, Disability and Health (ICF) at Chris Hani Baragwanath Hospital, Johannesburg Hellen Myezwa , Aimee Stewart , Eustasius Musenge & Paul Nesara Published online: 11 Nov 2009.

To cite this article: Hellen Myezwa , Aimee Stewart , Eustasius Musenge & Paul Nesara (2009) Assessment of HIV-positive inpatients using the International Classification of Functioning, Disability and Health (ICF) at Chris Hani Baragwanath Hospital, Johannesburg, African Journal of AIDS Research, 8:1, 93-105, DOI: 10.2989/AJAR.2009.8.1.10.723 To link to this article: http://dx.doi.org/10.2989/AJAR.2009.8.1.10.723

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African Journal of AIDS Research 2009, 8(1): 93–105 Printed in South Africa — All rights reserved

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ISSN 1608–5906 EISSN 1727–9445 doi: 10.2989/AJAR.2009.8.1.10.723

Assessment of HIV-positive in-patients using the International Classification of Functioning, Disability and Health (ICF) at Chris Hani Baragwanath Hospital, Johannesburg Hellen Myezwa1*, Aimee Stewart1, Eustasius Musenge2 and Paul Nesara2

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1 Department of Physiotherapy, School of Therapeutic Sciences, Faculty of Health Sciences, University of the Witwatersrand, 7 York Road, Parktown 2192, Johannesburg, South Africa 2 School of Public Health, University of the Witwatersrand, 7 York Road, Parktown 2192, Johannesburg, South Africa * Corresponding author, e-mail: [email protected]

The International Classification of Functioning, Disability and Health (ICF) short-version checklist was used to assess the impairments, activity limitations and participation restrictions experienced by a sample of HIV-positive in-patients admitted to Chris Hani Baragwanath Hospital in Johannesburg, South Africa. Laboratory tests, observation and review of patients’ medical records were used to complete the ICF Checklist. Eighty patients were assessed (23 males and 57 females). Common impairments related to the following functions: digestive, metabolic and endocrine systems (83.9%); sensory (83.5%); haematological, immunological and respiratory systems (82.5%); neuromusculoskeletal movement (73.8%); mental (72.6%); energy and drive (75%); sleep (71%); emotional (62%); and muscle power (75%). Activity limitations were present in the area of mobility (56.4%), major life areas (55.1%), and community, social and civic life (50%). Associations found among impairments, activity limitations and participation restrictions were that patients with sensory problems were five-times more likely to have problems in self-care than people without sensory problems. Patients with impairments in the digestive, genitourinary and neuromusculoskeletal systems experienced problems with general tasks (confidence interval [CI]: 4.05–103.03; p < 0.01). Patients with cardiovascular, haematological, immunological and respiratory system problems were 14-times more likely to have problems with execution of general tasks (odds ratio [OR] 14.06, CI: 2.75–71.94; p = 0.002). Activities of participation restriction, difficulties with general tasks and demands (OR 9.68, CI: 1.20–77.92), interpersonal relationships (OR 3.62, CI: 1.09–12.00), domestic life (OR 3.97, CI: 1.12–14.16), and community, social and civic life (OR 4.13, CI: 1.05–16.20) were closely associated with barriers in obtaining products for personal use and using technology. Understanding the prevalence and associations of disability and function in the course of HIV disease may serve as a baseline for developing appropriate and context-sensitive rehabilitation interventions and management strategies for people living with HIV or AIDS. Keywords: disability, dysfunction, environmental factors, HIV/AIDS, measurement, self-reporting, social aspects, South Africa

Introduction HIV disease is now described as an episodic condition that is chronic in nature (Nixon & Cott, 2000). As with other chronic conditions, rehabilitation has become an important part of the management of HIV infection. Understanding the impairments, functional limitations and disabilities associated with HIV should be a prerequisite to rehabilitation interventions (Kietrys, 2002; Nixon & Renwick, 2003). One way to understand these is to classify the health and healthrelated domains of HIV patients according to the International Classification of Functioning, Disability and Health (ICF) (World Health Organization [WHO], 2001). The overall aim of the ICF is to provide a unified and standard language and framework for the description of health-related states, disability and their consequences (WHO, 2001). According to the guidelines, the ICF does not classify people, but can be used “to describe the situation of each person within an array of health and health-related domains” (WHO, 2001, p. 2).

Thus, the ICF shifts the focus on individuals’ health conditions from cause to impact and allows these to be compared using a common metric. Limitations in bodily functions and structures as well as participation are closely associated with quality of life (Carrieri, Spire, Duran, Katlama, Peyramond, Francois et al., 2003; Zonta, De Almeida, De Carvalho & Werneck, 2003 and 2005; Hughes, Jelsma, Maclean, Darder & Tinise, 2004; Rusch, Nixon, Schilder, Braitstein, Chan & Hogg, 2004). Studies on this topic can also contribute to knowledge informing relevant services for people living with HIV or AIDS (PLHIV) (O’Dell, Hubert, Lubeck & O’Driscoll, 1996; Rusch et al., 2004). In addition, such research can inform appropriate education for rehabilitation professionals involved with PLHIV. It has been recognised that impairments and activity limitations due to any illness can be mitigated by appropriate environmental supports (Bedell, 2000; Nixon & Renwick, 2003). Thus, an understanding of the scope of a patient’s impairments, activity limitations and participation restrictions may contribute to their recovery. In this regard,

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the ICF is a universal and widely used tool (Stucki, Cieza, Ewert, Kostanjsek, Chatterji & Üstün, 2002; Rusch et al., 2004) and provides a basis where data on the nature and magnitude of health and social issues can be compared for PLHIV (Hwang & Nochajski, 2003). The ICF has been used in many studies as a framework to describe not only function and disability but also quality of life among people affected by various diseases (e.g. Stucki et al., 2002; Simmeosson, Leornadi, Lollar, Bjorck-Akesson, Hollenweger & Martinuzzi, 2003; Rusch et al., 2004). The ICF’s usefulness in framing functional problems among PLHIV was shown in a small pilot study in South Africa by Jelsma, Brauer, Hahn, Snoek & Sykes (2006). Apart from certain studies that have used the ICF explicitly to conceptualise the effects of HIV disease (e.g. Zonta et al., 2003 and 2005; Rusch et al., 2004), no published studies have used the ICF directly to assess PLHIV. In this study, the ICF Checklist was used to collect data on impairments, activity limitations and participation restrictions, as well as patients’ experience with their contextual environment, in order to describe a common picture among a group of individuals living with HIV in South Africa. The ICF Checklist (2001) (a shortened version of the ICF) was used as the research tool in this study. The ICF checklist has two main components: Part 1 scores body functions and structure, as well as the domains of activity (limitations) and participation (restrictions), and Part 2 considers contextual, environmental factors. Each of the two main components has three domains that are interrelated: physiological and anatomical (impairment); action and task (activities and participation); and environmental factors. The three domains are variously divided into categories and subcategories, which are the units that make up a domain (WHO, 2001). Thus, through the concepts of impairment, activity and participation, as well as environmental factors, the ICF offers a framework for the study of decrements in health and degrees of disability, and importantly takes into account the social aspects of disability.

Myezwa, Stewart, Musenge and Nesara

Health condition/disorder

Body function and structure

Environmental factors

Activities

Participation

Personal factors

Figure 1: Interaction between health, disability and function (see WHO, 2001)

1 shows the three domains in the ICF and the categories/ domains and subcategories that were asked about, tested or observed in this study. For instance, the column for subcategory level 2 lists examples of some of the subcategories in level 1, but not the full list (for the full ICF Checklist, see: www.who.int/classifications/icf/training/icfchecklist.pdf). In addition, the checklist has a section for demographic data, including patients’ age, gender, level of education, years of formal education, current occupation, and medical diagnosis. Each of the domains and their subcategories are quantified by the use of a qualifier and this depicts the magnitude or severity of the problem. Each of the subcategories is assessed using qualifiers that determine the severity of impairment or difficulty in performing an activity with and without assistance, or, in the case of environmental factors, the extent that factors are experienced as a barrier or facilitator. A description of how the ICF Checklist was used, coded and scaled is given in the Methods section, below. Methods

Definitions of terms An ‘impairment,’ as defined by WHO (2001) and adopted in this study, is a problem in body function or body structure accompanied by significant change or loss; ‘activity’ refers to the execution of a task or action by an individual, and ‘participation’ means involvement in life situations. The ICF describes environmental factors as making up the physical, social and attitudinal environment in which people live, and hence which may impact on a person’s functioning (WHO, 2001). ‘Disability’ in the ICF refers to problems in terms of impairments, activity limitations and participation restrictions, and ‘functioning’ refers to non-problematic areas, such as neutral aspects of health and health-related states (WHO, 2001). One aim of the ICF Checklist is to assess the relationships between the above-mentioned areas. A diagram of the interaction between components included in the ICF is given in Figure 1. The ICF Checklist The full ICF presents four levels of detail, while the shorter version (the ICF Checklist) gives two levels of detail. Table

The study setting A cross-sectional survey was undertaken at Chris Hani Baragwanath Hospital in Johannesburg, South Africa. This is the largest referral hospital in Africa (3 000+ beds), and is set in Soweto, one of the largest mixed-density, blackpopulated residential townships in South Africa. The ICF Checklist (2001) was used as the study tool and the items on the checklist were variously completed by interview and self-report using standardised questions, patient observation, muscle testing and review of medical records. Ethical clearance Institutional ethical clearance was obtained from the Committee for Research on Human Subjects at the University of the Witwatersrand, Pretoria, South Africa (ethical clearance no. M5050206 R14/49). Procedures Patients admitted to the medical unit at Chris Hani Baragwanath Hospital, between December 2005 and

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Table 1: Partial outline of the International Classification of Functioning, Disability and Health (ICF) checklist used in this study (see WHO, 2001)

Domains Impairments of body function (b)

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Impairments of body structure (s)

Activity limitation and participation restriction (d)

Environmental factors (e)

Subcategory level 1 b1: Mental b2: Sensory b3: Voice and speech b4: Cardiovascular, haematological and respiratory systems b5: Digestive system b6: Genitourinary b7: Neuromuscular-skeletal b8: Skin and related structures s1: Nervous system s2: Eye and ear s3: Voice and speech s4: Cardiovascular and respiratory s5: Digestive s6: Genitourinary s7: Movement d1: Learning and applying knowledge d2: General tasks and demands d3: Communication d4: Mobility d5: Self-care d6: Domestic life d7: Interpersonal relationships d8: Major life areas d9: Community and civic life First qualifier (fq): Extent of activity performance in normal environment Second qualifier (sq): Extent of activity without assistance e1: Products and technology e2: Natural environment and manmade changes e3: Support and relationships e4: Attitudes e5: Services systems and policies.

May 2006, and confirmed as being HIV-positive through laboratory tests and/or clinical diagnosis of AIDS, were approached for their participation in the study. The Karnofsky Performance Scale was used to select patients while excluding those that were too ill to be interviewed and assessed. The Karnofsky rating is widely used in palliative care and in cancer patients to very broadly classify patients’ functional status, with ‘0’ denoting death and ‘100’ signifying normal health with no complaints and no evidence of disease (e.g., see Crooks, Waller, Smith & Hahn, 1991; Hollen, Gralla, Kris, Cox, Belani, Grunberg et al., 1994). For example, a score of 60 would denote ‘requires occasional help but able to care for most personal needs.’ For this study, the cut-off point was a score of 30, which indicated a patient was severely disabled, very sick, and required active, supportive hospital treatment. After being informed of the nature of the study by the clinical team, patients signed consent forms to show willingness to participate in the study and then signed a final consent when the researchers approached them. Data collection Two researchers collected information from the patients after undergoing training and piloting in using the ICF Checklist

Subcategory level 2 Examples of b2 sensory functions: b2-10: Seeing b2-30: Hearing b2-35: Vestibular b2-80: Pain

Examples of s1 nervous system structures: s1-10: Brain s1-20: Spinal cord and nerves

Examples of d4 mobility activities: d4-30: Lifting and carrying objects d4-40: Fine hand use d4-65: Moving around using equipment d4-70: Using transportation d4-75: Driving

Examples of e2 natural environment and manmade changes: e2-25: Climate e2-40: Light e2-50: Sound.

(2001). The checklist was used to collect data on each patient through review of the patient’s medical records (to obtain data that could not be directly tested), physical assessment, and interview. Table 2 outlines the sources of the data gathered to inform the different health and health-related domains. Table 3 shows a full list of the laboratory test results of the Baragwanath in-patient group. The patients’ viral load was not tested as part of the study. Impairments were established by use of laboratory markers, dynamometry (measurement of mechanical power of a set of muscles) and goniometry (measurement of range of motion in a joint), as well as observation and self-report in response to parts of the checklist. The ICF Checklist is a very detailed tool and requires the use of other measures to ensure reliability and validity of the measurements (see Okochi, Utsunomiya & Takahashi, 2005). However, in transferring the data and assigning a score to an item on the checklist we recognise that the qualifier reliability could have been negatively affected. For example, as required by the ICF guidelines, in data obtained by self-report wherein the patients described their situation, they were asked to rate the extent of their impairment, degree of difficulty with an activity, or the level of ‘felt’ environmental barriers or facilitators. Whether the patient’s self-report constituted recording something as a mild

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Table 2: Health and health-related domains and the sources of data for completing the ICF Checklist (2001) Domains Mental functions Sensory functions and pain Voice and speech functions Functions of the cardiovascular, haematological, immunological and respiratory systems Functions of the digestive, metabolic and endocrine systems

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Genitourinary and reproductive functions Neuromusculoskeletal and movement-related functions Functions of the skin and related structures Structures related to cardiovascular system, respiratory system, and skin; and structures related to movement, such as muscle bulk and status of the skin Activity and participation, and environmental factors

Source of data Self-report by answering mini, mental test-questions; observation; answering recall and standard, simple calculation questions Pain: Self-rated pain on visual analogue scale (VAS) Seeing, hearing and vestibular: Observation and self-report Observation and self-report Blood pressure reading; blood test results; immunological report (allergies, hypersensitivity) and CD4 cell count; observation of respiration (breathing) Digestive, defecation and weight maintenance: Self-report, verified from medical notes Urination and sexual function: Medical notes and self-report Muscle strength: Dynamometry Joint range: Goniometry Observation, medical notes and self-report Available X-rays and inspection of structures

Self-report using standardised and piloted questions.

Table 3: Laboratory test results of the in-patient group (SD = standard deviation)

Laboratory test

n

Mean (±SD)

Range

CD4 cell count Mean corpuscular volume (MCV) Potassium Sodium Chlorine CO2 Urea Creatinine Glucose White cell count (WCC) Haemoglobin (HB) Platelets

45 69 68 68 67 66 67 66 28 69 69 69

117.5 (±145.9) 98.1 (±96.1) 4.0 (±0.82) 133.1 (±5.4) 93.3 (±24.4) 19.9 (±5.62) 10.6 (±16.6) 110.8 (±132.8) 7.9 (±11.9) 8.8 (±8.3) 10.2 (±2.7) 291.9 (±159.9)

2–570 60.3–880 2.5–6.6 116–147 10.4–115 6–37 1.4–88 5–853 1.5–68.2 0–54 4.7–15.8 12–720

problem or a moderate problem depended on the interpretation of the researcher. The researcher minimised potential bias by limiting the number of assessors to two and meeting frequently until there was congruence in the interpretation of the answers given by the patients. Coding of the ICF If impairment was present it was scaled in severity using the generic qualifiers shown in Box 1. From the guidelines outlined by WHO (2001), interrelationships may occur between impairments and activity limitations and participation restrictions as well as in relation to environmental factors. Impairments can be determined by direct observation or questioning the patient, or else assessed through standardised tests. ‘Body structures’ and ‘body functions’ were coded using three qualifiers, namely: the extent of the impairment, the nature of the impairment, and its location; these were then

Reference values used by the South African Institute for Medical Research (SAIMR) 79.1–98.9 fl 3.3–5.3 mmol/l 135–147 mmol/l 99–113 mmol/l 18–29 mmol/l 2.6–7 mmol/l 60–100 mmol/l 3.0–6.0 mmol/l 4–10 x 109/l 14.3–18.3 g/dl 137–373 x 109/l

scaled as described above for impairments (see Box 1). ‘Activities and participation’ were coded using two qualifiers: performance and capacity. ‘Capacity’ refers to the ability of the individual to perform an activity in a standard environment (i.e. their lived experience), while ‘performance’ refers to the individual’s ability to perform activities or execute a task in the current environment (WHO, 2001). For coding the impact of environmental factors, two qualifiers exist: whether the environmental factor is a facilitator or a barrier; hence, the negative or positive scale signifies the extent to which an environmental factor acts as a barrier or a facilitator, respectively (Box 2). To obtain the above information the assessors asked patients whether or not the environmental factor was present for them: and, if so, was the factor accessible (where applicable), and to what extent was the factor felt as a facilitator or barrier. Thus, the raters concentrated on establishing whether the environmental factor was present or absent, and

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Box 1: Scale of the severity of impairments, used for coding items of the ICF Scale

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0 1 2 3 4 8 9

Absence of impairment Mild Moderate Severe Complete Not specified Not applicable

5–24% 25–49% 50–95% 96–100% Used in cases where there is insufficient information to determine the presence of impairment. Denotes a situation where it is inappropriate to apply a particular code.

if so was it of a standard or quality that was acceptable to the individual. In this way it could be assigned as either a ‘felt’ barrier or facilitator. The severity or extent of the environmental factor could then be assessed and a scale given using the generic qualifier in the range ‘no barrier/no facilitator’ to ‘complete barrier/complete facilitator’ (see Box 2). Each of the domains and their categories and subcategories were qualified into ‘mild,’ ‘moderate’ or ‘severe’ according to the measure used to determine the presence and extent of the impairment. For example, if the measure of a patient’s haemoglobin was within normal limits it was scored as ‘no impairment.’ The medical specialist recommended one point above normal as ‘mild,’ two points above as ‘moderate,’ three or more points above as ‘severe,’ and beyond that it was qualified as ‘complete.’ Similarly, activity limitation and participation restriction and environmental factors were qualified using the qualifiers recommended by WHO (2001). Piloting and standardisation of the ICF domains A process of piloting and standardisation of the assessment procedure was undertaken to ensure valid and reliable results. All domains were piloted and procedures to collect the data were established. Inter-rater reliability was established for dynamometry measurements. Moderate inter-rater reliability (rho = 0.57) was found for the quadriceps muscle, and poor inter-rater reliability was found for the biceps muscle (rho = 0.39); therefore only one rater was used throughout the study. Statistical analysis Data were captured in a database designed in Epi Info 3.3.2. The data were analysed using the SAS 9.1 and STATA 9.0 software packages. Descriptive statistics were produced for all the demographic variables. For categorical variables, frequency distribution tables were used to present the data, while for continuous variables measures of central tendency (mean and standard deviation [SD]) were used. The Pearson’s chi-square test was used to determine the associations between certain categorical variables, and, where appropriate, Fischer’s exact test was used. Statistical significance was ascertained at the 0.05 level. Statistical analysis was performed at the level of the three domains and for the related categories and subcategories; thus, each of the two main components of the ICF was analysed in accordance with the WHO guidelines for the ICF (see WHO, 2001): 1) Impairment (body function and structure): The analysis was performed to indicate the presence or severity of

Box 2: Scale for coding the impact of environmental factors: negative scale = barriers; positive scale = facilitators

0 1 2 3 4

Negative scale: No barrier Mild barrier Moderate barrier Severe barrier Complete barrier

Positive scale: No facilitator Mild facilitator Moderate facilitator Substantial facilitator Complete facilitator

impairments. For the purposes of this paper, only the presence of impairment is indicated (see also WHO, 2001). 2) Activities and participation: The analysis was performed to indicate the presence or absence of activity limitation, and a distinction was made between the performance and capacity qualifiers (see also WHO, 2001; and section ‘Coding of the ICF,’ above, for definitions of performance and capacity). 3) Environmental factors: The analysis made a distinction between contextual environmental factors experienced as a barrier or facilitator (see also WHO, 2001). A logistic regression with backward elimination was used to determine the odds of activity limitation or participation restriction given certain levels of domains and subcategories. That is, the odds of activity limitation on given body-function restrictions, and, in turn, the odds of activity limitation on participation restrictions (impairments) were calculated. The same approach was also used to determine the odds of body impairment impacting on participation restriction (see Figure 2). Thus, variables with multiple responses were dichotomised to enable logistic regressions to be performed. Hence, impairments with qualifier levels 1, 2, 3 or 4 were assigned the value ‘1,’ while no impairment was assigned ‘0’; those with the qualifier ‘not applicable’ or ‘not specified’ were excluded from the analysis. Results Of the 88 in-patients approached at Chris Hani Baragwanath Hospital, 80 agreed to participate, giving a response rate of 91%; 23 (29%) were males and 57 (71%) were females. All the participants were black South Africans and their demographic characteristics are summarised in Table 4. Patients who participated in the study had a Karnofsky Performance Scale rating that ranged from a score of 30% to 90% (mean score 60%), indicating that most required occasional assistance for some activities but were otherwise

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able to care for their own needs. Only 45 of the in-patients assessed had a CD4-cell-count record available in their medical notes; the mean CD4 cell count among them was 118 (±145) (range 2–570), while 29 of the 45 participants had a count below 100. Only two patients could give dates since first confirmation of their HIV status. Few patients could confirm if the medication they were currently on were antiretrovirals (ARVs): 72 (90%) could verify that they were taking some medication, but only five confirmed taking ARVs.

four patients (43%) reported qualitative changes, such as changes in sensation or the absence of sensation. Under the category of cardiovascular, immunological and respiratory systems, 52 patients (66%) had problems associated with the structure of the respiratory system. Radiographic changes were evident and showed lung destruction and opacity. Muscle wasting was noted under structures of movement. For body structures, the extent of impairment was not rated as a baseline as it was not available in all items.

The prevalence of impairments, activity limitations and participation restrictions Impairments in body functions among the sample of HIV-positive in-patients were present in all domains. The patients’ five most common impairments were related to the digestive, metabolic and endocrine systems; sensory functions; haematological, immunological and respiratory systems; neuromusculoskeletal movement; and mental functions (Table 6). Under the haematological, immunological and respiratory systems, respiratory problems were most prevalent (n = 57; 68%) followed by haematological problems (n = 46; 58%) (Table 6). Structural changes that were noted in the nervous system included the spinal cord and peripheral nerves. Thirty-

The status of activity limitation and participation restriction Definition of qualifiers: activity limitation As explained in the Methods section, a distinction was made between the first and second qualifier to distinguish between the patient’s performance in their own environment with help (i.e. first qualifier [fq]) and the patient’s own capacity to perform without help (i.e. second qualifier [sq]), respectively. The difference between the capacity and performance qualifiers depicts the number of participants who could not cope without help from the environment. In this regard, the categories outlined in Table 8 showed the largest differences. The patients gave several reasons why they could not go out into the community, even when they had mobility — for instance because of fear of stigma or even the inability to find a toilet quickly enough. Table 10 outlines the odds ratios (OR) (point estimate and confidence intervals) and p-values of only statistically significant results. Table 10 shows that patients with sensory problems were five times more likely to have problems in self-care than people without sensory problems. A similar pattern was noticed in patients with impairments in the digestive, genitourinary and neuromuscular systems. That is, patients with problems in functions of the digestive system were found to be 20-times more likely to experience problems with general tasks than patients without problems (CI: 4.05–103.03; p < 0.01). Patients with cardiovascular, haematological,

Body structure and body function impairments

Bodily activity limitations

Participation restriction (experience of environmental factors)

Figure 2: Associations between impairments, activity limitations and participation restrictions assessed by the logistic models

Table 4: Demographic characteristics of the in-patient cohort drawn from Chris Hani Baragwanath Hospital, South Africa

Mean age (years) Males Females Marital status*: Never married Widowed Married Years of formal education*: No education 7 years and below 8–11 years 12–13 years Employed Unemployed Mean score on the Karnofsky Performance Scale ARV treatment status

n 80 23 57

Proportion of sample (%) 100 29 71

61 12 3

76.3 15 3.8

Mean (±SD) 37 (±8.7)

6 8 23 29 47 59 2 2 17 21 60 75 80 60 (±15) 72 could confirm taking some medication; 5 of these confirmed ARV therapy.

* Percentage does not add up to 100 because some patients’ data were missing.

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Table 5: Prevalence and qualifiers of impairments of body functions in the in-patient cohort (n = 80) Impairment prevalence Mild to severe No problems problems n (%) n (%) 22 (27.5) 58 (72.6) 13 (16.5) 66 (83.5) 63 (78.8) 17 (21.2)

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First-level domain b1: Mental functions b2: Sensory functions b3: Voice and speech functions b4: Functions of the cardiovascular, haematological, immunological and respiratory systems b5: Functions of the digestive, metabolic and endocrine systems b6: Genitourinary and reproductive functions b7: Neuromusculoskeletal and movement-related functions b8: Skin and related structures and body functions

Impairment qualifiers Mild n (%)

Moderate n (%)

Severe n (%)

21 (26.3) 22 (27.8) 9 (11.3)

22 (27.5) 29 (36.7) 4 (5)

15 (18.8) 15 (19) 3 (3.8)

12 (15)

65 (82.5)

20 (25)

34 (42.5)

11 (13.8)

13 (16.3)

67 (83.9)

15 (18.8)

31 (38.8)

21 (26.3)

49 (61.3)

31 (38.7)

11 (13.8)

13 (16.3)

5 (6.3)

21 (26.3)

59 (73.8)

24 (30)

22 (27.5)

13 (16.3)

50 (62.5)

30 (37.5)

21 (26.3)

4 (5)

4 (5)

Note: Percentages may not add up to 100 because an assessment of particular impairments was not applicable in some cases

Table 6: Second-level domains (subcategories) of the in-patients’ five most-common body-function impairments First-level domain Mental functions

Sensory functions Digestive, metabolic and endocrine systems Haematological, immunological and respiratory systems Neuromusculoskeletal movement

Second-level domain (subcategories) Energy and drive Sleep Emotional Pain Weight maintenance Respiratory problems (shortness of breath) Haematological problems Muscle power

Table 7: Prevalence of impairment of body structures among the in-patient cohort Impairment Structure of nervous system Cardiovascular, immunological and respiratory systems Structures related to movement

n (%) 39 (48.8) 47 (58.9) 47 (58.8)

Table 8: Categories with the largest difference between the capacity and performance qualifiers; the differences depict the percentages (and numbers) of people who could not cope without help from the environment First-level domains (categories) d6: Domestic life d2: General tasks and demands (e.g. making a cup of tea) d4: Mobility

Differences 51.9% (41) 45.2% (37) 25.7% (26)

immunological and respiratory problems were 14-times more likely to have problems with the execution of general tasks (OR 14.06, CI: 2.75–71.94; p = 0.002). Similarly, patients with sensory problems were four-times more likely to have problems with self-care without help from their environment, and five-times more likely to have problems with domestic life. Patients with voice and speech

n (%) 60 (75) 56 (71) 49 (62) 66 (80) 61 (76) 57 (68) 46 (58) 60 (75)

problems were six-times more likely to have problems with communication, in terms of both the capacity qualifier (without help from the environment) and performance qualifier (with help from the environment). Problems with neuromusculoskeletal and movement-related functions had an effect on activities such as general tasks and demands in simple and multiple tasks, mobility, self-care and domestic life. Patients reported experiencing different aspects of environmental factors as barriers or facilitators (Table 11). The totals show a summation of the barriers and facilitators, with facilitator experiences in the domains of support and relationships, and attitudes, particularly in relation to healthcare workers. Many patients explained that they felt healthcare workers were more helpful and accommodating than any other system they had to deal with. Of note are the less facilitatory experiences with friends and acquaintances, and the area of services, systems and policies. Fifty-three percent of the patients had mild to severe problems with the natural environment, in particular light and sound; 24 (30%) experienced problems with light, and 27 (34%) with sound. Figure 3 summarises the average number of impairments, activity limitations, and participation restrictions experienced by the in-patient group. The group experienced a mean of 11 impairments (range 1–22), and a mean of 8 activity limitations (range 0–14) when the activities were performed with the help of their environment. When they did not have help, the mean

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Table 9: Prevalence of activity limitation and participation restriction among the in-patients (*individual capacity to cope with help in one’s usual environment; **individual capacity to cope without help in one’s usual environment)

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Sub-domain (subcategory level 1)

d1: Learning and applying knowledge d2: General tasks and demands d3: Communication d4: Mobility d5: Self-care d6: Domestic life d7: Interpersonal interactions and relationships d8: Major life areas d9: Community social and civic life

Performance qualifier* (copes with help) Prevalence of degree of difficulty No difficulty Mild/moderate Severe/complete n (%) n (%) n (%) 67 (84.8) 12 (15.2)

Capacity qualifier** (copes without help) Prevalence of degree of difficulty No difficulty Mild/moderate Severe/complete n (%) n (%) n (%) 59 (73.6) 13 (16.3) 8 (10)

63 (78.8) 69 (86) 35 (43.8) 47 (58.8) 67 (83.6) 50 (62.6)

13 (16.3) 9 (11.3) 32 (40.1) 30 (37.5) 6 (6.6) 19 (23.8)

4 (5.1) 2 (2.5) 3 (16.3) 5 (6) 7 (8.8) 11 (13.8)

26 (32.6) 64 (79.1) 19 (23.8) 35 (43.8) 26 (32.5) 48 (60.1)

36 (45.1) 13 (16.3) 31 (38.8) 33 (41.3) 23 (28.8) 17 (21.3)

18 (21.5) 3 (3.8) 30 (37.6) 12 (15) 31 (38.8) 15 (18.5)

35 (44.8) 40 (50)

21 (26.9) 21 (26.3)

22 (28.2) 19 (23.8)

25 (32) 30 (41)

15 (19.2) 25 (31.3)

38 (38.8) 25 (31.3)

Table 10: The effect of body impairment on activity limitation; asterisks (*) denote results discussed in the text (OR = odds ratio; CI = confidence interval; fq = first qualifier [i.e. performs with help]; sq = second qualifier [i.e. performs without help]) Body impairments (independent variable) b1: Mental functions b2: Sensory functions b3: Voice and speech b4: Cardiovascular, haematological and respiratory systems b5: Digestive, metabolic and endocrine systems

b6: Genitourinary and reproductive functions

b7: Neuromusculoskeletal and movement-related functions

Outcome variable d6: Domestic life, fq e4: Obtaining products d5: Self-care, sq* d6: Domestic life, sq* d3: Communication, fq* d3: Communication, sq* d2: General tasks* d4: Mobility d2: General tasks* d4: Mobility, sq d5: Self-care, fq d5: Self-care, sq d6: Domestic, sq d3: Communication, fq d5: Self-care, fq d5: Self-care, sq d7: Mobility, fq d2: General tasks, sq d4: Mobility, sq d5: Self-care, fq d5: Self-care, sq d6: Domestic life, sq

number of activity limitations was higher (i.e. 14), as they experienced less environmental facilitators (mean 6) and more environmental barriers (mean 8). Association between activity limitation and experience of the environment When testing if impairments could have an effect on experience of the environmental-factor problems, only neuromusculoskeletal impairments were found to have a significant effect on experience of the environment. When testing if activities had an effect on the patients’ experience of the environment, difficulties with general tasks

OR (CI) 0.23 (0.07–0.79) 3.04 (1.08–8.57) 4.90 (1.37–17.84) 4.84 (1.68–13.96) 6.36 (1.62–24.92) 6.75 (1.97–23.08) 14.06 (2.75–71.94) 5.40 (1.41–20.66) 20.43 (4.05–103.03) 5.83 (1.64–20.73) 5.01 (1.03–24.43) 9.85 (2.02–48.17) 8.65 (2.30–32.60) 3.76 (1.00–14.34) 2.53 (1.00–6.49) 2.64 (1.01–6.90) 2.64 (1.00–6.98) 6.23 (2.10–18.45) 4.08 (1.33–12.50) 3.09 (1.00–9.57) 3.62 (1.26–10.37) 3.67 (1.24–10.84)

p-value 0.02 0.04 0.05 0.001 0.01 0.001 0.001 0.01 0.001 0.001 0.05 0.001 0.001 0.05 0.05 0.05 0.05 0.001 0.01 0.05 0.02 0.02

and demands (OR 9.68, 1.20–77.92), interpersonal relationships (OR 3.62, CI: 1.09–12.00), domestic life (OR 3.97), and in community, social and civic life (OR 4.13, CI: 1.05–16.20) were found to be closely associated with barriers in obtaining products for personal use and in using technology (Table 12). For most of the patients, difficulties occurred in the area of acquiring medicines, food, and products for personal use. Difficulties experienced within community, social and civic life were less likely to predict attitudes in the community and could not be considered to have an effect on problems reported with perceived attitudes. Demographic variables were added to form a multiple regression equation using variables that were found to be

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Table 11: Baseline results denoting the in-patients’ experience of environmental factors as barriers or facilitators Barriers

40 NUMBER

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e1: Products and technology e2: Natural environment and human-made changes to the environment e3: Support and relationships e4: Attitudes e5: Services, systems and policies

Facilitators

No barrier n (%) 63 (78.8)

Mild to moderate n (%) 11 (13.8)

Severe to complete n (%) 6 (7.6)

No facilitator n (%) 56 (70.1)

Mild to moderate n (%) 15 (18.8)

Substantial to complete n (%) 9 (11.3)

38 (47.5)

30 (37.5)

11 (15.1)

78 (97.5)

1

1

54 (67.5) 39 (48.8)

11 (13.8) 16 (20.1)

15 (18.8) 25 (31.3)

16 (20) 18 (22.5)

18 (22.6) 18 (22.6)

46 (57.5) 44 (55)

25 (31.3)

23 (28.8)

31 (40)

37 (46.3)

23 (28.8)

20 (25)

Body impairments Activity in first qualifier Activity in second qualifier Environmental barrier Environmental facilitator

30 20 10

IN-PATIENT GROUP Figure 3: A box-and-whisker plot showing the summary statistics for the numbers of impairments, activity limitations, participation restrictions and experience of environmental factors for the in-patient group

significant at the 0.05 level. Of these, marital status and gender were found to be closely associated with activity limitation and the experience of environmental factors. Men with sensory problems (b2) were less likely to have domestic problems as indicated by the adjusted odds ratio (OR) 0.23 (CI: 0.07–0.77) and although they had neuromuscular skeletal problems, they were also less likely to have mobility problems (OR 0.30, CI: 0.09–0.99) when compared with women (Table 13). When adjusted for gender, neuromuscular skeletal problems became a stronger predictor of the ability to obtain products in the community (code e4-F) (OR 4.17, CI: 1.36–12.75; p = 0.01) (see Tables 10 and 11 for baseline results). Married patients with neuromuscular problems were less likely to have problems in obtaining products for daily use than patients who were single. Discussion This cohort of HIV patients were all hospitalised and had a Karnofsky Performance Scale rating ranging from a score of 30% to 90% and a mean score of 60%, indicating that most required occasional assistance for some activities

but were otherwise able to care for their own needs. This is in contrast to the participants in the study by Rusch et al. (2004) who were PLHIV resident in the community. That study revealed a complex picture of high rates of impairments associated with activity limitation and participation restriction. They reported that over 90% of the study population experienced one or more impairments (with an average of seven), with one-third reporting over ten (Rusch et al., 2004). Our study revealed that 100% of the study participants experienced one or more impairments, with a mean of 11 impairments per person for the group. The use of the ICF gives an indication of the areas where most problems manifested in this HIV in-patient population, in the two domains of body structure and function, and activities and participation. This contributes to building an accurate picture of a typical HIV-positive in-patient population in South Africa. Of concern was the inability of all patients to confirm whether or not they were on ARVs, and this limited the analysis since associations between treatment with ARVs and the levels of impairments, activity limitation and participation restriction could not be established. The status of impairments among the in-patients High rates as well as variations in impairments, as found in this study group, were also reported in other studies (e.g. Crystal & Sambamoorthi, 1996; Cunningham, Shapiro, Hays, Dixon, Visscher, George et al., 1998; Rusch et al., 2004; Zonta et al., 2005; Anandan, Bravemen, Keilhofner & Forsyth, 2006). In this study, both domains of physical and mental-related functions had high rates of impairments, with problems in muscle strength being most prevalent. This was unsurprising as all patients in the cohort were classified clinically by the medical team as being at stage 3 or 4 of HIV disease (WHO HIV clinical staging). Consistent with the virus’s multi-organ involvement (see Dabbauchi & Okpapi, 2001; Hinz, McCormack & Van der Spuy, 2002) and the extensiveness of the ICF, each patient in this study reported problems in four or more body functions (clinical or self-reported impairments). This suggests the need to pay close attention to the presence of common impairments in PLHIV, such as pain, breathing problems and shortness of breath, and how these may influence activity levels and participation restriction. Hence, in order to provide an appropriate and

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Table 12: The association between patients’ activity limitations and experience of the environment (n = 80) (fq = first qualifier; sq = second qualifier)

Independent variables d2: General tasks, sq d7: Interpersonal interactions and relationships, sq d6: Domestic life, fq d9: Community, social and civic life, fq d9: Community, social and civic life, fq

Outcome variables e1-B: Obtaining products and using technology e4-F: Attitudes

Odds ratio 9.68 (1.20–77.92) 3.62 (1.09–12.00) 3.97 (1.12–14.16) 4.13 (1.05–16.20) 0.19 (0.04–0.92) (less likely)

p-value 0.03 0.04 0.03 0.04 0.04

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Table 13: The effect of body impairments on activity limitation and social restriction when adjusted for gender and marital status Independent variables b2: Sensory (p = 0.004) b7: Neuromusculoskeletal (p = 0.009) e1-F: Obtaining products

Outcome variables D6: Domestic, sq D4: Mobility, sq B7: Neuromusculoskeletal

sensitive level of care, the physiotherapist needs to be aware that breathing problems, and specifically dyspnea (71% of patients in this group reported such problems), can affect the HIV patient’s activity levels (see also Ungvarski & Flaskrud, 1999). Furthermore, the underlying pathology may occur as a result of the direct effect of the virus on the pulmonary vascular system, which can result in a reduction in diffusion capacity (see Diaz, King, Pacht, Wewers, Gadek, Neal et al., 1999), lung damage post-infection, or possibly the effect of anaemia. There is a paucity of literature that explores the self-reported impairments (such as muscle aches, less muscle power, energy fatigue, reduced sexual functions, memory loss and diminished emotional functions) that are prevalent in people with HIV. Furthermore, little literature is available on HIV-positive individuals’ performance in the activities of daily living or community participation (e.g. Anandan et al., 2006). In South Africa, the documentation of functional problems in PLHIV has been largely in relation to studies on health-related quality of life (e.g. O’Keefe & Wood, 1996; Hughes, 2004; Jelsma, 2006). Some studies have identified the prevalence of specific problems, such as pain and energy and weight maintenance among PLHIV (e.g. O’Keefe & Wood, 1996; Cunningham et al., 1998; Hughes et al., 2004; Zonta et al., 2005). Anandan et al. (2006) reported fatigue as the most severely experienced impairment in PLHIV, which is expressed as low energy and drive in the ICF; in this study, 76% of the in-patients had this problem. Fatigue in AIDS patients has been reported previously as contributing to limitations in their activities, such as mobility and the activities of daily living and communication (e.g. O’Dell et al., 1996). In our study, 59% of the in-patients had a low haemoglobin level, which, as outlined by Volberding, Baker & Levine (2003), may be a direct result of HIV infection or an indirect side effect of ARV medication, and thus will contribute to low energy levels (Volberding et al., 2003). The impairment of weight loss was prevalent in our study, but has been otherwise reported as an inaccurate indicator of quality of life once a patient becomes symptomatic (Cunningham et al., 1998). However, the complexity of the effect of HIV on

Adjusted odds ratio Gender: 0.23 (0.07–0.77; p = 0.02) Gender: 0.30 (0.09–0.99; p = 0.05) Marital status: 4.17 (1.36–12.75; p = 0.01)

the different body systems is illustrated by associations found between body mass index and diffusion capacity (Diaz et al., 1999). In this study, the in-patients reported weight maintenance as a major problem. The underlying mechanisms for loss of body weight are multi-factorial, with the literature reporting direct effects of HIV on protein metabolism, muscle bulk and nutritional deficiencies due to mal-absorption and gastrointestinal abnormalities, increased resting energy expenditure, and infections (Macallan, 1999; Wanke, 2004). Eighty one percent of the in-patients reported problems with pain (under the subcategory sensory problems). Sensory impairments predicted problems with domestic and self-care activities. Pain was strongly associated with difficulties in general tasks (p = 0.0001), mobility (p = 0.001) and domestic activities (p = 0.005). In numerous studies, pain has been reported as a common manifestation of symptomatic disease as well as being associated with activity and role limitation (e.g. Cunningham et al., 1998; Lindberg, 2006). Problems in genitourinary, reproductive, neuromusculoskeletal and movement-related functions, as well as the digestive, metabolic and endocrine systems, significantly affected the in-patients’ activities, such as self-care, domestic life activities and mobility, thus indicating the need to focus on these areas of function in order to improve HIV patients’ functional activity level and subsequently their health-related quality of life. The underlying reasons for these associations should be explored as they could be associated with personal, contextual and environmental influences. However, the categories where associations or relationships were found are consistent with the literature as outlined above, and from the clinical picture drawn, there are possible implications for management and resource allocation for programmes set up specifically for PLHIV. With the expanding roll-out of the ARV programme in South Africa, there is a need to focus attention on the management of those impairments that can have a profound bearing on an HIV patient’s functional status. The virus’s multi-organ involvement has clinical implications

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that may affect patients’ capacity for exercise and continuing with daily activities and ultimately their quality of life (Mars, 2004). Activity limitations and functional deficits for this cohort were also high (see Table 9). The status of functional deficits and activity limitations Patients in this cohort reported having one or more difficulties with activity (action and task). Apart from delineating the amount of disability, the ICF allows for a differentiation between what an individual can do on his or her own and what the individual can do within his or her own environment, with one’s usual supportive measures in place (this may include external help from people, aids and appliances, or other supportive measures, such as support groups). In general, there were differences in the patients’ execution of activities with help (performance) and without help (capacity) (see section ‘Status of activity limitations’ and Table 9). There were differences between the capacity and performance qualifiers in the activities of general tasks and demands, mobility and domestic life. This would imply that the in-patients were dependent for their activities on outside help, and in this cohort, the immediate family were probably carrying this burden. This indicates that factors beyond an individual patient’s impairments alone compound the patient’s experience of disability; accordingly, factors such as uncertain living conditions, lack of education, and social isolation should be noted (Vidrine, Amick, Gritz & Arduino, 2003; Ruiz Perez, Rodriguez Baño, Lopez Ruz, Del Arco Jimenez, Causse Prados, Pasquau Liaño et al., 2005; Anandan et al., 2006). The results obtained in the domain of activity limitation possibly point to the need to train family members in patient-based needs as well as to explore and analyse the community situation. For example, in the area of mobility there was a difference of coping with help and without help (54% reported activity difficulties with help; and 75%, activity difficulties without help). This would indicate that mobility strongly requires an individual’s own competence, and that training for the patient and help with overcoming underlying impairments, such as weakness or pain, should be closely managed. Previous studies have indicated the need to promote exercise and physical activity as a preventative measure for weakness, as this also contributes to overall good health (LaPerriere, Klimas, Fletcher, Perry, Ironson, Perna & Schneiderman, 1997; O’Brien, Nixon, Tynan & Glazier, 2004; Zonta et al., 2005). The benefits of exercise for the population with HIV or AIDS have been extensively researched, as outlined in a review by O’Brien et al. (2004) and other authors, where exercise has been shown to increase muscle strength and endurance, and improve body composition, thus improving both mood and quality of life (Stringer, Berezovskaya, O’Brien & Beck, 1997; Dudgeon, Philips, Bopp & Hand, 2004). The results reported by Rusch et al. (2004) and Anandan et al. (2006) on the domains where difficulties were experienced, although similar, did not differentiate between how a patient copes with or without help from his or her family or the community, thus failing to indicate the true situation of the HIV patient before the community, including the family, begins to participate in their care. In this study the needs

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of the in-patients in the areas of self-care, general tasks, and to a lesser extent mobility were observed as being compensated for by community factors. This would be an important consideration for programme development and policy direction. Activities that were undertaken without community assistance in the domains of general tasks and demands that involve undertaking simple tasks, interpersonal relationships, and community and civic life were found to significantly affect the patients’ experience of their ability to obtain food, transport, housing and communication. Likewise, Ruiz-Perez et al. (2005) found that the absence of social support was associated with a worse quality of life. Understanding these types of community dynamics would positively influence rehabilitation management plans, the content of patient education, and referral networks and points, and help determine the types of interventions that community-based organisations and other HIV-related health services should focus their attention on. Notably, the study cohort showed many activity limitations that were related to the basic activity of daily living, whereas the literature describing better-resourced cohorts has often been concerned with instrumental activities of daily living (ADL) (e.g. work–role function and wider community participation). For example, Crystal & Sambamoorthi (1996) found that working at a job, working around the house, or going to school were more prevalent than limitations in more specific physical tasks, as seen in this study (see also Crystal, Flieshman, Hays, Shapiro & Bozette, 2000; Geilen, McDonnel, Wu, O’Campo & Faden, 2001). This may be in part due to the less uniform roll-out of the ARV programme in South Africa, with many factors leading to patients not going on ARV (AIDS Foundation of South Africa, 2007). In this study, attempts to get an accurate picture of the in-patients’ ARV status was not successful: 90% (72) could confirm they were on medication, but only five confirmed it was ARV therapy. Other studies have suggested that activity limitation may be associated with cognitive impairment (Benedict, Mezhir, Walsh & Hewitt, 2000), older age, lower educational attainment, a more advanced state of disease or a higher burden of symptoms (Chrystal, 2000), whereas in this study activity limitation was associated with marital status and gender. However, a population-based study may yield different results. Certain contextual issues, such as culture and the position of women, have been shown to be influential factors in coping and functioning among people living with AIDS (UNAIDS, 2006). Cunningham, Crystal, Bozzette & Hays (2005) found an association between functional status, associated health-related quality of life and survival, after controlling for socio-demographic variables, CD4 cell count and highly active antiretroviral treatment. The same study also showed that pain and physical functioning were uniquely associated with survival and could be considered prognostic indicators (Cunningham et al., 2005). In this study, both these domains were found to be prevalent (see Table 5: sensory functions) and should therefore be dealt with by appropriate interventions. In relation to individuals’ experience of the environment a mixed picture was found (see Table 11). It is encouraging to see a large proportion of HIV in-patients reporting positive facilitatory experiences with health workers; however,

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environmental barriers could be minimised in terms of attitudes and support from friends and acquaintances. Community services should be harnessed to ensure or enhance facilitative or quality-of-life experiences for PLHIV. One interesting finding, which tallied with observations made in another study in South Africa by Jelsma et al. (2006), was the patients’ sensory experience with the natural environment, wherein 53% had mild to severe problems with the natural environment, in particular light and sound: 30% (24) had problems with light, while 34% (27) had problems with sound. The challenges of the study The results of this study are of value as they identify important areas of physical impairment, activity limitation and participation restriction in a South African HIV-positive in-patient cohort. They also indicate the need for holistic assessment of patients’ physical status in order to positively affect the health-related quality of life of PLHIV. However, the results of the study are limited by lack of information regarding the time since a patient’s HIV infection or diagnosis, or the duration of their ARV treatment. For generalisibility, the research would need to be conducted among a wider range of patients, and in different contexts, in order to get a more representative picture. In particular, in the South African population, a rural group would add value to the picture and would be more representative of the greater proportion of South African residents. In spite of this the study does indicate key problem areas in an in-patient cohort. The results corroborate what has been reported in the literature with contextual differences taken into consideration. The use of the ICF allowed a comprehensive overview of the HIV-positive in-patients’ experience of health and disability. However, the ICF Checklist is long, and standardisation of the variables proved to be a very long process. If possible, a shorter list that is specific to HIV disease may be more suitable and easier to conduct. Also, in some domains, wide confidence intervals and very high odds ratios were found. This can be attributed to the high variability in self-reported data on activity limitation and participation restriction. Conclusions In this study, using the ICF has revealed details about the levels of and interactions between impairments, activities and participation that are closely related to function and would subsequently influence participation in society in a cohort of people infected with HIV. This cohort had high levels of impairments, activity limitations and participation restrictions. Especially, the activities of general tasks, self-care, domestic life, and personal mobility were associated with impairments in the respiratory, genitourinary, neuromuscular and digestive systems. The results may contribute to care interventions and approaches to rehabilitation for PLHIV, which may in turn improve prognosis. The problems of pain, reduced muscle strength, reduced energy, and the subsequent effects of activity limitation should be considered in developing any programmes. The in-patients’ self-reported experience of

Myezwa, Stewart, Musenge and Nesara

environmental factors has highlighted areas where ‘felt’ support is facilitative and where it still remains a barrier. To facilitate a more comprehensive approach to the rehabilitation of PLHIV, all therapists involved with PLHIV should understand how the affected body systems may ultimately influence an individual’s activity and participation. Acknowledgements — We are grateful to Professor Ken Huddle and his medical team at Chris Hani Baragwanath Hospital, and also Helen Farmer and Michele Dihele for their tireless work. The study was conducted as part of research for a doctoral thesis on mainstreaming knowledge of HIV into physiotherapy education. The research was funded by the Medical Research Council (South Africa) with additional support from the Carnegie Foundation (USA) through the University of the Witwatersrand (South Africa). The authors — Hellen Myezwa is a doctoral candidate and a lecturer in the Department of Physiotherapy at the University of the Witwatersrand. Aimee Stewart is an associate professor in the Department of Physiotherapy at the University of the Witwatersrand, with specialisation in research of chronic disease. Eustasius Musenge is a biostatician with the Department of Epidemiology and Biostatistics as well as a doctoral candidate at the University of the Witwatersrand. Paul Nesara is a biostatician and is currently with the Southern African Development Cooperation.

References AIDS Foundation of South Africa (2007) ‘HIV/AIDS in South Africa.’ Online at: www.aids.org.za/hiv.htm [Accessed 14 March 2008]. Anandan, N., Bravemen, B., Keilhofner, G. & Forsyth, K. (2006) Impairments and perceived competence in persons living with HIV/AIDS. Work 27, pp. 255–266. Bedell, G. (2000) Daily life for eight urban gay men with HIV/ AIDS. The American Journal of Occupational Therapy 54(2), pp. 197–206. Benedict, R.H.B., Mezhir, J.J., Walsh, K. & Hewitt, R.G. (2000) Impact of human immunodeficiency virus type-1: associated cognitive dysfunction of activities of daily living and quality of life. Archives of Clinical Neuropsychology 15(6), pp. 535–544. Carrieri, P., Spire B., Duran, S., Katlama, C., Peyramond, D., Francois, C., Chene, G., Lang, J.M., Moatti, J.P., Leport, C. & The APCRO Study Group (2003) Health-related quality of life after one year of highly active antiretroviral therapy. Journal of Acquired Immune Deficiency Syndromes 32, pp. 38–47. Crooks, V., Waller, S., Smith, T. & Hahn, T.J. (1991) The use of the Karnofsky Performance Scale in determining outcomes and risk in geriatric outpatients. Journals of Gerontology 46, pp.139–144. Crystal, S., Flieshman, J.A., Hays, R.D., Shapiro, M.F. & Bozette, S.A. (2000) Physical functioning among persons with HIV: results from a nationally representative survey. Medical Care 38(12), pp. 1210–1223. Crystal, S. & Sambamoorthi, U. (1996) Functional impairment trajectories among persons with HIV disease: a hierarchical linear models approach. Health Services Research 31(4), pp. 469–488. Cunningham, W.E., Crystal, S., Bozzette, S. & Hays, R.D. (2005) The association of health-related quality of life with survival among persons with HIV infection in the United States. Journal of Internal Medicine 20, pp. 21–27. Cunningham, W.E., Shapiro, M.F., Hays, R.D., Dixon, W.J., Visscher, B.R., George, W.L., Ettl, M.K. & Beck, C.K. (1998) Constitutional symptoms and health-related quality of life in

Downloaded by [Florida International University] at 21:46 30 December 2014

African Journal of AIDS Research 2009, 8(1): 93–105

patients with symptomatic disease. American Journal of Medicine 104, pp. 129–136. Danbauchi, S.S. & Okpapi, J.U. (2001) Cardiovascular involvement in HIV/AIDS: report of three cases. West African Journal of Medicine 20(4), pp. 261–264. Diaz, P.T., King, M.A., Pacht, E.R., Wewers, M.D., Gadek, J.E., Neal, D., Nagaraja, H.N., Drake, J. & Clanton, T.L. (1999) The pathophysiology of pulmonary diffusion impairment in human immunodeficiency virus infection. American Journal of Respiratory Critical Care Medicine 160, pp. 272–277. Dudgeon, W.D., Philips, K.D., Bopp, C.M. & Hand, G.A. (2004) Physiological and psychological effects of exercise interventions in HIV disease. AIDS Patient Care and STDs 18(2), pp. 81–95. Geilen, A.C., McDonnel, K.A., Wu, A.W., O’Campo, P. & Faden, R. (2001) Quality of life among women living with HIV: the importance of violence, social support and self-care behaviours. Social Science and Medicine 52, pp. 315–322. Hinz, S., McCormack, D. & Van der Spuy, Z.M. (2002) Endocrine function in HIV infected women. Gynaecology Endocrinology 1, pp. 33–38. Hollen, P.J., Gralla, R.J., Kris, M.G., Cox, C., Belani, C.P., Grunberg, S.M., Crawford, J. & Neidhart, J.A. (1994) Measurement of quality of life in patients with lung cancer in multicenter trials of new therapies. Cancer 73, pp. 2087–2098. Hughes, J., Jelsma, J., Maclean, E., Darder, M. & Tinise, X. (2004) The health-related quality of life of people living with HIV/AIDS. Disability and Rehabilitation 26(6), pp. 371–376. Hwang, J.-L. & Nochajski, S.M. (2003) The International Classification of Function, Disability and Health (ICF) and its application with AIDS. Journal of Rehabilitation 69(4), pp. 4–15. ICF Checklist (2001) ICF Checklist, Version 2.1a, Clinician Form [a checklist of major categories of the International Classification of Functioning, Disability and Health for the World Health Organization]. Online at: www.who.int/classifications/icf/training/ icfchecklist.pdf [Accessed 9 January 2005]. Jelsma, J., Brauer, N., Hahn, C., Snoek, A. & Sykes, I. (2006) A pilot study to investigate the use of the ICF in documenting levels of function and disability in people living with HIV. South African Journal of Physiotherapy 62(1), pp. 7–13. Kietrys, D. (2002) Contemporary issues in rehabilitation of patients with HIV disease, part 3: the effects of exercise on individuals with HIV disease. Rehabilitation Oncology 20, pp. 1–7. LaPerriere, A., Klimas, N., Fletcher, M.A., Perry, A., Ironson, G., Perna, F. & Schneiderman, N. (1997) Change in CD4+ cell enumeration following aerobic exercise training in HIV-1 disease: possible mechanisms and practical applications. International Journal of Sports Medicine 18(supplement 1), pp. S56–S61. Lindberg, C.E. (2006) The experience of physical symptoms among women living with HIV. The Nursing Clinics of North America 41(3), pp. 395–408. Macallan, D.C. (1999) Wasting in HIV infection and AIDS. Journal of Nutrition 129(1), pp. S238–S242. Mars, M. (2004) HIV — Implications for exercise in treatment and rehabilitation. South African Journal of Physiotherapy 60, pp. 9–17. Nixon, S. & Cott, C. (2000) Shifting perspectives: reconceptualizing HIV disease in a rehabilitation framework. Physiotherapy Canada 52, pp. 189–197. Nixon, S. & Renwick, R. (2003) Experiences of contemplating returning to work for people living with HIV/AIDS. Qualitative Health Research 13(9), pp. 1272–1290. O’Brien, K., Nixon, S., Tynan, A.M. & Glazier, R.H. (2004) Effectiveness of aerobic exercise in adults living with HIV/AIDS: systematic review. Medical Science Sports Exercise 36(10), pp. 659–666. O’Dell, M.W., Hubert, H.B., Lubeck, D.P. & O’Driscoll, P. (1996)

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Physical disability in a cohort of persons with AIDS: data from the AIDS Time-Oriented Health Outcome Study. AIDS 10(6), pp. 667–673. O’Keefe, E.A. & Wood, R. (1996) The impact of human immunodeficiency virus infection on quality of life in a multiracial South African population. Quality of Life Research 5, pp. 275–280. Okochi, J., Utsunomiya, S. & Takahashi, T. (2005) Health measurement using the ICF: test–retest reliability study of ICF codes and qualifiers in geriatric care. Health and Quality of Life Outcomes 3, p. 46. Ruiz Perez, I., Rodriguez Baño, J., Lopez Ruz, M.A., Del Arco Jimenez, A., Causse Prados, M., Pasquau Liaño, J., Martin Rico, P., De la Torre Lima, J., Prada Pardal, J.L., Lopez Gomez, M., Muñoz, N., Morales, D. & Marcos, M. (2005) Health-related quality of life of patients with HIV: impact of socio-demographic, clinical and psychosocial factors. Quality of Life Research 14(5), pp. 1301–1310. Rusch, M., Nixon, S., Schilder, A., Braitstein, P., Chan, K. & Hogg, R. (2004) Impairments, activity limitations and participation restrictions: prevalence and associations among persons living with HIV/AIDS in British Columbia. Health and Quality of Life Outcomes 2, p. 46. Simmeosson, R.J., Leornadi, M., Lollar, D., Bjorck-Akesson, E., Hollenweger, J., & Martinuzzi, A. (2003) Applying the International Classification of Functioning, Disability and Health (ICF) to measure childhood disability. Disability and Rehabilitation 25(11/12), pp. 602–610. Stringer, W.W., Berezovskaya, M., O’Brien, W.A. & Beck, K.C. (1997) The effect of exercise training on aerobic fitness, immune indices and quality of life in HIV-positive patients. Medicine and Science in Sports and Exercise 30(1), pp. 11–16. Stucki, G., Cieza, A., Ewert, T., Kostanjsek, N., Chatterji, S. & Üstün, B. (2002) Application of the International Classification of Functioning, Disability and Health (ICF) in clinical practice. Disability and Rehabilitation 24(5), pp. 281–282. UNAIDS (2006) Report on the Global AIDS Epidemic. Geneva, UNAIDS. Ungvarski, P.J. & Flaskrud, J.H. (1999) HIV/AIDS — A Guide to Primary Care Management (4th edition). Philadelphia, Pennsylvania, W.B. Saunders Co. Vidrine, D.J., Amick, B.C., Gritz, E.R. & Arduino, R.C. (2003) Functional status and overall quality of life in a multi-ethnic HIV-positive population. AIDS Patient Care and STDs 17(4), pp. 187–197. Volberding, P.A., Baker, K.R. & Levine, A.M. (2003) Human immunodeficiency virus haematology. Haematology 1, pp. 294–313. Wanke, C. (2004) Pathogenesis and consequences of HIV wasting. Journal of Acquired Immune Deficiency Syndromes 37(5), pp. 277–279. World Health Organization (WHO) (2001) International Classification of Functioning Disability and Health. Geneva, WHO. (WHO ICF website: http://www.who.int/classifications/icf/en/) Zonta, M.B., De Almeida, S.M., De Carvalho, M.T.M. & Werneck, L.C. (2003) Functional assessment of patients with AIDS disease. Brazilian Journal of Infectious Diseases 7(5), pp. 301–306. Zonta, M.B., De Almeida, S.M., De Carvalho, M.T.M. & Werneck, L.C. (2005) Evaluation of AIDS-related disability in a general hospital in southern Brazil. Brazilian Journal of Infectious Diseases 9(6), pp. 479–488.

Assessment of HIV-positive in-patients using the International Classification of Functioning, Disability and Health (ICF) at Chris Hani Baragwanath Hospital, Johannesburg.

The International Classification of Functioning, Disability and Health (ICF) short-version checklist was used to assess the impairments, activity limi...
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