Effectiveness of Palliative Care Including Physiotherapy in HIV Patients A Review of the Literature

It is estimated that 41 million people throughout the world are living with HIV/AIDS and of these 39 million are in sub-Saharan Africa (UNAIDS 2004). The HIV/AIDS epidemic is devastating the African continent. In Africa poorly resourced health care infrastructure further impairs the quality of life in HIV sufferers. Palliative care is an approach that aims to improve the quality of life of people living with threatening diseases such as cancer and HIV/AIDS. This review aimed to determine the efficacy of palliative care. Complementary therapies such as Cognitive Behavioural Therapy, peer/counselling group therapy, massage therapy, and exercise therapy constitute palliative care. Seventeen articles published in peer reviewed journals during the period 1990-2005 were reviewed. The findings of our review demonstrate that there are indications that palliative care can be effective in improving the quality of life in patients with life threatening diseases such HIV/AIDS. Research in this field is complicated by the heterogeneity of study samples, difficulty in patient recruitment, and death before the end of the intervention period. Future research in this area should aim to include larger study samples, using valid tools to assess quality of life and to employ qualitative methods in studies to assess the effectiveness of palliative care.


Effectiveness of Palliative Care Including
Physiotherapy in HIV Patients A Review of the Literature

INTRODUCTION
An estimated 41 million people worldwide are living with HIV/AIDS and of these 39 million are in sub-Saharan Africa (UNAIDS 2004).Ten million of these HIV/AIDS sufferers are significantly affected by the disease, which causes great suffering and economic hardship for them and their families (Sepulveda et al., 2002).Palliative care (PC) has been introduced with the aim of reducing suffering in HIV/AIDS patients.It is deemed crucial, since people with HIV infection can live 10 years and longer (Brecht et al., 2001, Singer 2002).Palliative care also offers a support system for carers to cope during the patient's illness and in their own bereavement after the loss of a relative or friend (Addington-Hall & Higginson, 2001).The World Health Organisation (WHO) defines palliative care as an approach that should improve the quality of life in patients and their relatives who face problems associated with life-threatening diseases (WHO, 2002).
Palliative care is multidisciplinary in nature and it involves nurses, physiotherapists, medical doctors, counsellors, social workers and religious leaders (Meldbrum, 2003;Addington-Hall & Higginson, 2001).Physiotherapy plays a central role in this multidisciplinary approach by assisting patients to make the most of their decreasing potential, encouraging them to set short-term goals and relieving discomfort (Boyce, 2004).
Palliative care is considered to be a cost-effective method by which to manage HIV/AIDS patients (Sepulveda et al., 2002).It is thus advisable to introduce palliative care in poverty-stricken regions where the infrastructure is poor and opioid drugs are unavailable (Sepulveda et al., 2002).However, many African countries have not yet considered palliative care as a public health solution (Sepulveda et al., 2002).One explanation for this is that effectiveness of palliative care remains questionable and is mostly based on anecdotal reports.This review aims to ascertain

Formulation of search terms
Four key search terms were formulated: effectiveness of palliative care in HIV/AIDS patients, effectiveness of alternative therapy care in HIV/AIDS patients, effectiveness of home-based care in HIV/AIDS patients and effectiveness of primary care in HIV/AIDS patients.Synonyms were then applied to formulate the 20 key search terms.The search terms are formulated in Table 1.

Database search and results
MEDLINE, CINAHL, African Healthline and SCIRUS were searched, as these databases are available at the University of the Western Cape library.The results of each search term were combined and results are presented in Table 2.

Methodological quality of articles reviewed
Studies were reviewed for methodological rigour by using validated quality scoring tools.The Crombie Scale was used to assess cohort studies, the Pedro Scale was use to assess the randomized controlled trials (RCTs) and survey studies were assessed by applying the National Health Medical Research Council Scale (NHMRC-Australia, 2003).

RESULTS
A total of 17 articles were reviewed.Table 3 indicates the four types of study design employed in the studies reviewed.

Observational study
The observational study aimed to assess the feasibility of quality of life (QoL) data in a palliative care setting and suggest practical ways of presenting QoL outcomes over a prospective period (Paci et al., 2001).The sample included terminal cancer patients aged 18 years and above.Patients experienced a reduction of pain in the final weeks of life.It was not possible to ascertain whether this finding was due to the palliative care intervention, as the pain reduction may also attributed to effective pain control by drugs or under-reporting of pain in the last period of life.See Table 4 Surveys Five surveys (Butters & Higgison, 1993;Hardy, Edmonds, Turner, Rees & A'Hern, 1999;Brechtl, Breitbart, Galietta, Krivo & Rosenfeld, 2001;Lo et al., 2002;Goodwin, Higginson, Myers, Douglas & Normand, 2003) aimed to evaluate the quality of life in patients receiving palliative care.Only one study could not mention the type of patients involved in the study, but most of the patients suffered from HIV/AIDS and advanced cancer.Males and females aged 19-91 years were included.Tables 5 and 7

Butters et al. (1993)
To compare the views of palliative care reported by patients, informal carers and the community care team, a multidisciplinary team caring for people with late stage HIV/AIDS illness.Galantino et al. (1999) To evaluate the effect of electroacupuncture in improving the condition of neuropathic HIV/AIDS patients Hardy et al. (1999) To assess the quality of life of patients in palliative care by using the Rotterdam Symptom Checklist

Description of interventions
Out of five randomized controlled trial studies, only one study used palliative home care as an intervention to evaluate the effectiveness of palliative care while others evaluated the effectiveness of complementary/alternative therapies used by HIV/AIDS patients in conjunc-tion with quality of life assessment.Table 10 summarizes the interventions and main findings of palliative care and complementary/alternative therapies in HIV/AIDS and cancer patients.

Qualitative study
The main aims of the qualitative study (Armes & Higginson, 1999) were to assess the quality of HIV palliative care services and to qualitatively assess the needs of those with advanced HIV/AIDS.The components of high-quality HIV palliative care were assessed by using the multidimensional model developed by Maxwell (Armes & Higginson, 1999).Maxwell's model (Armes & Higginson, 1999) identifies the components of high-quality HIV palliative care as:   The main findings illuminated the complex nature of the needs of people with HIV/AIDS.Clients' needs and personal circumstances seemed to influence the criteria used to judge the six dimensions of high-quality HIV palliative care and also their rating of their relative importance.These six dimen-sions of high-quality HIV palliative care appear to be inextricably linked from the client's point of view.Thus, service commissioners and providers need to assess the quality of HIV services in palliative care in all six dimensions, namely effectiveness, acceptability, efficiency, access, equity and relevance.

Description of outcome measures
The most common outcome tool used in all 17 studies reviewed was the McGill pain and quality of life questionnaire.The McGill pain and quality of life questionnaire describes physical symptoms, psychological aspects, existential, support and sex domains.Assessment of pain was the most common outcome measure assessed in all studies.Quality of life evaluation is the main outcome of the effectiveness of palliative care although it is often difficult in the terminal stage to evaluate quality of life, since patients sometimes die before the end of intervention.Table 11 illustrates how quality of life was assessed as well as the different tools utilized in the studies that were reviewed.

SUMMARY OF REVIEW
Complementary alternative therapies (CAM), peer/counselling group therapy (PSC), as well as physiotherapy techniques including massage and exercise therapy, are included in palliative care and may be effective in improving QoL of HIV/Aids patients (Diego et al., 2001;Molassiotis et al., 2002).However, many patients do not communicate with their healthcare provider about their use of alternative therapies, nor do the providers ask patients about their use of such therapies.This results in a chance for interaction with the anti-retroviral drugs medications, adverse reactions of alternative therapies, or other unforeseen problems.It is therefore critical for HIV/AIDS patients and their providers to openly communicate about the use of alternative therapies.There is an increasing trend of alternative therapies usage among patients and this trend is likely to continue until a cure for HIV/AIDS is developed (Friedenreich & Orenstein, 2002).
Quality of life is the primary outcome measure of palliative care in terminally ill HIV/AIDS patients.This review highlighted that the McGill quality of life questionnaire/scale and Support Team Assessment Schedule questionnaire are valid tools to provide information on quality of life in HIV/AIDS patients (Butters & Higgison 1993;Hardy, Edmonds, Turner, Rees & A'Hern, 1999;Lo et al 2002;Goodwin, Higginson, Myers, Douglas & Normand 2003).

CONCLUSION
Conclusive evidence regarding the efficacy of palliative care for HIV/AIDS patients is lacking since very few studies have been conducted in this field.Furthermore, published studies lack methodological rigour.Research in this area is complicated by the variety in the package of palliative care, difficulties in patient recruitment, heterogeneity of study samples, death of a patient before the end of the project, and heterogeneity of study samples.Randomised controlled trials may be a suitable research design to assess the effectiveness of palliative care.However, this design may be inappropriate in the terminal stages of life due to the death of patients before the end of the intervention.Qualitative study designs should be considered in assessing the quality of HIV palliative care services since the quality of HIV palliative care appears to be inextricably linked to the client's point of view.
Despite the high incidence of HIV/AIDS in Africa, palliative care is not yet a priority on the health agenda in most African countries (Sepulveda et al., 2003).Considering the cost efficacy, research on HIV/AIDS and palliative care in Africa is of paramount importance in order to meet the needs of people with HIV/AIDS and their families (Addington-Hall & Higginson, 2001).
Sparber et al. (2000) T o determine the extent at which Complementary Medicine or alternative therapy CAM) is used by adults patients participating in HIV/AIDS clinical trials and investigate issues of communication between patients and clinical investigators Brechtl et al. (2001) To address the impact of Highly Active Antiretroviral Therapy (HAART) on medical, palliative care, and quality of life of patients with advanced HIV infection Lo et al. (2002) To evaluate the quality of life of palliative care patients in the last two weeks of life De Visser et al. (2002) To estimate the prevalence of Complementary Medicine or alternative therapy (CAM) use in a nation-wide sample of Australian people living with HIV/AIDS, and to identify sociodemographic and attitudinal variables associated with CAMVirik et al. (2002) To qualify and quantify the nature of palliative Medicine Liaison Consultation service in a large teaching hospital and the utility of a simple scoring system in the assessment of the impact of the service on direct patient careRadbruch et al. (2002)  To evaluate information about the variability in the documentation and the services among the palliative care units and on factors influencing this variabilityGoodwin et al. (2003) To evaluate the effectiveness of palliative day care in improving pain, symptom control, and quality of life Butters et al. (1993),Galantino 10  Surveys:  et al. (1999),Hardy et al.(1999), 3 cross-sectional surveys, Sparber et al. ( 2000), Brechtl 5 prospective surveys, et al. (2001), Lo et al. (2002), 1 retrospective survey De Visser et al. (2002), Virikt 1 longitudinal study et al. (2002), Radbruch et al. (2002), Goodwin et al. (2003) McWhinney et al. (1994), 5 Randomised controlled Birk et al. (2000), Cohen et al. trials (2000), Diego et al. (2001), Molassiotis et al. (2002) Paci et al. ( 2001

Table 1 :
summarize the study aims and populations of the surveys.Forty percent (4) of the surveys(Butters &   Search Terms.