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Human Immunodeficiency Virus in Southern and East Africa the Pandemic and Interface with Rehabilitation

Ness, Catherine Dieudonnee, PhD, MSc, CLT, VRT, CAMAG1; Myezwa, Hellen, PhD, MA, MSc, DHT2; Buccimazza, Ines, MB ChB (Stell), FCS (SA), FACS3

doi: 10.1097/01.REO.0000000000000154

1Member of the Chartered Society of Physiotherapy, London, United Kingdom

2Member of the Chartered Society of Physiotherapy, London, United Kingdom; and Associate Professor, Wits School of Physiotherapy, University of the Witwatersrand, Johannesburg, South Africa

3Senior Lecturer, Breast and Endocrine Unit, Department of General Surgery, Nelson R Mandela School of Medicine, University of KwaZulu-Natal, Durban, South Africa

Correspondence: Hellen Myezwa, PhD, MA, MSc, DHT, Department of Physiotherapy, Faculty of Health Sciences, University of the Witwatersrand, 7 York Rd, Parktown, Johannesburg, South Africa (

The authors declare no conflicts of interest.

Cancer continues to contribute significantly to the disease burden in sub-Saharan Africa. Despite this, it is not a given priority due to the large burden of communicable diseases. Persons living with HIV (PLHIV) may experience AIDS-defining malignancies, further contributing to the overall burden of cancer in sub-Saharan Africa. The rates of these malignancies have not decreased substantially in the era of treatment of HIV/AIDS with anti-retroviral medication (ART).1

Cancer survival rates are improving in developed countries due to prophylactic screening, early intervention, and improved treatment. In South Africa, incidence of cancer is reported to be 64.1 per 100 000 among women and 73.1 per 100 000 among men.2 Life expectancy at birth for 2017 is estimated at 61.2 years for males and 66.7 years for females.3 The rate of cancer suggests urgency in terms of management of the disease, as well as the need for adequate rehabilitation of these patients from diagnosis (prehabilitation), throughout their cancer treatment and after treatment has concluded in order to reintegrate into society at the highest level of function possible. Furthermore, oncology rehabilitation can play a role in enabling survivors to better manage side effects of future cancer treatment in the event of a recurrence.4–6

One of the confounding conditions for cancer is HIV/AIDS and HIV/AIDS continues to have a high burden of disease in sub-Saharan Africa. In the top 10 sub-Saharan countries, the average prevalence ranges from 6.5% to 27.2%.7 The HIV/AIDS prevalence in South African is 12.6%, where more than 7 million people are living with HIV. For adults aged 15 to 49 years, an estimated 18% of the population is HIV-positive.3 Approximately one-fifth of South African women in their reproductive ages (15-49 years) are HIV-positive.3 Successful implementation of ART, along with more effective screening and thus earlier identification of infection, has enabled many PLHIV to live longer, more active lives.8 , 9

As persons successfully treated are living longer, they may experience disabling side effects of ART and/or multiple morbidities that require rehabilitation.8 Possible comorbidities include arthritis, fractures, osteoporosis, depression and other mental illnesses, and cancer.9 , 10 As reported in a study that tracked the incidence of HIV/AIDS-related cancers, a 10% increase of ART coverage, resulted in a decrease in HIV/AIDS-related cancers such as Kaposi sarcoma (5%) and stomach cancer (13%).11 Conversely, non-Hodgkin lymphoma increased by 6%, liver cancer increased by 12%, prostate cancer increased by 5%, and breast cancer increased by 5%.11 Breast cancer is the most common type of cancer diagnosed among women in sub-Saharan Africa.12 , 13 In 2014, the incidence of breast cancer in South Africa was 823014 and the estimated risk of developing breast cancer is 1 to 52 cases15 compared with 1 in 8 lifetime risk in developed countries.16 Between 2000 and 2014, there has been a 35.8% increase in the incidence of breast cancer nationally. Breast and cervical cancers are most prevalent among women in sub-Saharan Africa, and the specialty resources to treat these cancers are scarce. Patients with breast cancer with concurrent HIV/AIDS tend to be younger than their HIV-negative counterparts. They have an increased risk of adverse events during cancer treatment of breast cancer, which causes delays in treatment time lines as well as greater side effects that impact on rehabilitation needs.17–19 Concurrent diagnosis of breast cancer and HIV/AIDS is not uncommon, and those with both conditions may present with more advanced disease at the time of diagnosis.17 They tend to experience an increase in treatment-related complications and have poorer outcomes.20 Many seek opinions from their traditional healers before attending medical centers, thus contributing to delayed presentation.21–23 The care pathway for patients with breast cancer is twice the recommended international time frame.24 The triad of treatment (chemotherapy, radiation, and surgery) for patients with breast cancer may cause musculoskeletal complications, which would potentially require physiotherapy or occupational therapy. Treatment of lymphedema is recognized and provided in both private and state hospitals in a model that is not fully coordinated.

Dietz described the stages of cancer rehabilitation as (1) preventive (prior to treatment commencing to minimize the effects of cancer treatment), (2) restorative (to assist with return to pretreatment levels of function), (3) supportive efforts in advanced stages of cancer to maintain function, provide palliative care, and train caregivers.25 , 26 Lehmann et al27 described the barriers to delivery of cancer rehabilitation as a lack of identification of patients' problems and referral by oncologists who themselves are unfamiliar with the concept of rehabilitation.27 Cancer rehabilitation works better when it is carried out within the context of an interdisciplinary team including physiotherapists, occupational therapists, and oncology nurses.28 , 29 Rehabilitation can occur in a variety of settings that suit the patient: at home, an outpatient clinic, or within an acute care facility.30–32

In sub-Saharan Africa, there are 46 countries with varying health care policies and varying levels of health care resources. The focus on cancer screening, prevention, and treatment is growing under the banner of the African Organisation for Research and Treatment in Cancer (AORTIC) ( Cancer survival outcomes in Africa are poor and often confounded by a concurrent diagnosis of HIV/AIDS.33 , 34 Diagnosis and treatment of both HIV/AIDS and cancer are impacted by lack of awareness by patients that often leads to late presentation at clinics, thus contributing to poor outcomes. African health care systems do not adequately address the problem of cancer.35 , 36 South Africa's health care system serves 55.9 million people. Eighty-four percent of the population receives care through a state-funded system, whereas 16% receive care through a private fee-for-service system.37

In KwaZulu-Natal (KZN), the second largest province in South Africa, there is a ratio of 1 physiotherapist to 8000 people in the province (state and private).38 The heavy economic and psychosocial burden of cancer on patients and their families, with inadequate or no patient information about cancer, as well as insufficient numbers of skilled health care personnel.

In 2016, the South African Council for Medical Schemes posted its updated draft policy on the Management of Early Breast Cancer as well as its guidelines for the Management of Metastatic Breast Cancer.39 , 40 These documents refer to the multidisciplinary team comprising solely of a surgeon, a medical oncologist, and a radiation oncologist.39 , 40 There is no reference to the supportive health care professionals necessary to provide rehabilitative medicine to patients with breast cancer.

South Africa is currently creating a National Health Insurance structure, which will change how health care is funded and provided. As part of this process, the South African Society of Physiotherapy (SASP) is currently involved in negotiating for the profession of physiotherapy to be included in this structure. The Framework and Strategy for Disability and Rehabilitation Services in South Africa 2015-2020 proposes to ensure adequate service provision to the whole population through the National Health Insurance umbrella. Noncommunicable diseases, such as cancer, weigh heavily on health care budgets, and cancer in particular is an area of interest for the Department of Health to focus resources. With no published locally appropriate specific data relating to oncological rehabilitation, the SASP is using data from developed countries as a guide for local needs analysis.

Currently, in the KZN state sector, physiotherapy management of patients with breast cancer is ad hoc and reactive, relying on the referral from a specialist. Physiotherapists will only evaluate the patient on a referral basis from the surgical or medical oncology team once a musculoskeletal complication arises. There is no prophylactic assessment, and there are no posttreatment oncology rehabilitation protocols in place. Patients do not currently have enough educational material to engage in self-referral based on symptoms. In the private sector, anecdotal reports show a different pattern of therapy, where patients can self-refer to physiotherapists for assessment and treatment, as physiotherapists retain a first-line practitioner status in South Africa. However, in some cases, funding of treatment by private health care groups still requires a specialist's referral in order to secure payment. Manual therapy provided on a one-on-one basis is readily available from any physiotherapist, but there is a shortage of suitably trained oncology physiotherapists. Funders do not recognize this field of physiotherapy and only fund conditions such as lymphedema.

Research into oncology and physiotherapy has been conducted over the last 30 years in Europe and America, as presented in Schüle's report of 2013.31 There is a paucity of research in Africa in the area of oncology rehabilitation. However, there is a growing body of evidence in HIV/AIDS that can be translated and used in oncology care. PLHIV may suffer long-term side effects of medical management that may be similar to side effects of cancer treatment. The nature and extent of the cognitive, neurological, musculoskeletal, and sensory impairment can contribute to participation limitations. Oncological methods are evolving, and patients can access care at a day center rather than as inpatients, resulting in people remaining active, with some continuing to work throughout their therapy.41–43 Palliative care for control of symptoms and maintenance of function is being explored.44–46 There are numerous studies that support the use of rehabilitation modalities to counter negative effects of HIV/AIDS and cancer such as fatigue, immobility, resultant wasting, weakness, poor function, and quality of life.47–49 Management approaches and service delivery interventions for both HIV/AIDS and cancer as chronic conditions have been developed and tested with promising results.50 , 51

Physiotherapists play a role in the multidisciplinary team in providing rehabilitation care to patients with breast cancer.52 , 53 A second barrier to comprehensive physiotherapy care of patients with breast cancer is that of finances, with out-of-pocket expenses adding to the burden for the patients and their carers. In a managed health care setting, the funding is directed to surgery, chemotherapy, and radiotherapy. Rehabilitation and management of side effects of treatment are not currently adequately reimbursed in the low-resource settings. In developed countries, economic cost studies relating to funding of treatments associated with breast cancer have revealed that the costs of complications relating to lymphedema, cellulitis, and other problems during and after treatment are significant.54–56 In the context of so many hidden financial burdens of breast cancer, the physiotherapy profession needs to adapt its role to provide timely necessary care efficiently and in a cost-effective manner. Currently, in the state sector in KZN, physiotherapists do not routinely evaluate patients with breast cancer prior to surgery.

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There is a growing interest in breast cancer and HIV/AIDS, defining the role that HIV plays in the biology of breast cancer, but paucity of data in both this field of research and breast cancer rehabilitation in South Africa is evident. There is an opportunity within the rich multicultural setting of South Africa to establish the rehabilitation needs of persons living with breast cancer and HIV/AIDS. In future, as South Africa strives to institute a National Health Insurance, all supportive therapies such as physiotherapy, nursing, occupational therapy, psychology, and exercise therapy are required to combine skills and research to counter impairment, activity limitation, and participation restrictions among women with breast cancer and HIV/AIDS.

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