While HIV/Aids has largely dropped off the news agenda, physios are playing an increasing role with these patients.
HIV and Aids might not grab the headlines the way they did say, 25 years ago, but that doesn’t mean they have gone away. Indeed, it’s quite the opposite; the annual number of newly diagnosed HIV infections almost doubled in the UK, from 4,152 in 2001 to 7,734 in 2007, and there are an estimated 77,400 people in the UK living with HIV. The increase, says the Health Protection Agency, is mainly due to sustained levels of newly acquired infections among men who have sex with men and an increase in diagnoses among heterosexual men and women, most of whom acquired their infection in a high prevalence country, for example sub-Saharan Africa. What has changed in the last quarter century – in the western world at least – is that HIV is no longer seen as an automatic death sentence. Anti-retroviral therapies, which are being refined and improved all the time, mean that people are living much longer; indeed, HIV today is considered by many to be a long-term, chronic disease. Physiotherapy, of course, plays an important role in the management of long-term conditions, so HIV should surely be no different? Yes and no. While some HIV services employ physiotherapists as a matter of course, the number who specialise in this disease area is small and, anecdotally, is centred on London and in other large cities.
Broad experience needed
Physiotherapy is an important part of the management of HIV, both in hospital and in the community. But it demands broad expertise across many sub-specialties of physio – for example, neurology and respiratory – as well as knowledge of HIV itself. Kirsti Duke, a band 7 physiotherapist who specialises in infection and immunity at Barts and the London trust, is one of the very few physios who work almost entirely with patients with HIV/Aids. ‘It’s a specialist centre and I’ve been doing this job for around two years,’ she explains. ‘Because I was a band 6 in neurology, I had HIV experience, so when the opportunity came up, I was really keen to take it.’ HIV affects just about every part of the system,she says, which means that she might be treating problems across the physio spectrum. These include musculoskeletal, neurological and respiratory complications, as well as the side effects of anti-retroviral therapies. ‘We know that the drugs are keeping people alive and so they have to take them,’ she says. ‘But as physios we’re helping people to deal with the side effects, which can cause real health problems.’
Guidelines in development
According to Kirsti Duke, there is very little in the way of evidence or guidelines around physiotherapy and HIV. ‘We have an unofficial clinical interest group – we’re too small to be official,’ she says. ‘We’re working on a set of guidelines but they are in the very early stages.’ One issue, she says, is that few hospitals outside London have physios who specialise in treating patients with HIV, and those who do tend to be based in other big cities. The amount of research on physiotherapy and HIV is minimal too, she says – something that she and others are trying to address, with, among other things, a newly formed collaborative with colleagues in Canada (see panel: Research deficit). The research that has been published tends to be on the benefits of exercise for people with HIV. Kim Hawkins, a senior physiotherapist in HIV and neurology at Guy’s and St Thomas’ trust in London, who works in outpatients, says much of her work is lifestyle-related, including promoting healthy eating and exercise. For example, she runs twice-weekly exercise classes as well as liaising with colleagues in the community.
Specialising in HIV
There are, she says, few physios specialising in HIV. Anecdotally, she believes that the trend is for HIV patients to be treated within whatever (medical) specialty they require at a given time, receiving physio from the relevant team. ‘My gut feeling is that there are fewer specialist HIV physios than there were. Being an HIV physio means being a bit of a jack of all trades. Sometimes if someone has particular neurological needs, for example, they might be better being looked after by the neuro physio.’ There are specific issues to be aware of, however. For example, fatigue can be a problem with HIV-positive patients, particularly if they have hepatitis C as well, and this needs to be built into exercise programmes.
Longer life expectancy
According to Rachael Moses, advanced physiotherapist in critical care and infectious diseases in Newcastle upon Tyne, the role of the physiotherapist working with HIV-positive patients has evolved over the past decade. ‘People with HIV are surviving for longer due to an improvement in anti-retroviral combination therapy and expertise within infectious disease medicine. However, with longer life expectancy comes an increase in secondary infections and complications as well as side effects of prolonged medication use,’ she says. She adds that physiotherapy often begins in the very acute phase of HIV diagnosis and treatment. In the north east of England, for example, around 50 per cent of all patients present with an Aids-defining illness, in many cases Pneumocystis carinii pneumonia. ‘Patients suffering from PCP have widespread pulmonary infiltrates on chest x-ray and an alarmingly low arterial oxygen level. These patients often require continuous positive airway pressure on an infectious disease unit or high dependency unit/intensive treatment unit environment. ‘Patients with PCP can become acutely unwell very quickly. Close monitoring and respiratory physiotherapy involvement is crucial in preventing the need for invasive ventilation.’ The prognosis for most patients diagnosed early and treated with anti-retrovirals is excellent, she says. ‘HIV should be considered in most cases to be a long-term chronic disease.’
Risk of cardiovascular disease
There are particular challenges. ‘Neuropathic pain management [which can be a side effect of anti-retrovirals] is often difficult for any patient, let alone the patient with HIV. ‘Strengthening and stretching exercises should be given along with joint mobilisation as indicated. This may be performed in an inpatient or outpatient setting, and electrotherapy and acupuncture should always be considered for persistent pain.’ Long-term infection and treatment regimes can often affect muscle strength, Rachel Moses says, so resistive exercises should be commenced as soon as possible and adapted to address functional problems. Musculoskeletal problems, such as lipodystrophy syndrome, which happens due to changes in fat metabolism, can also result from the use of anti-retrovirals, says Kirsti Duke. This leads to a reduction in the fat on the face and arms, legs and buttocks, with an increase in visceral fat around the abdomen – which, in itself, carries increased risk of cardiovascular disease, hence one of the reasons for exercise programmes.
Confidentiality is key
She also points out that confidentiality can be particularly challenging for this patient group. Not everyone will have told family and friends about being HIV positive – due to the stigma that still remains – so extra care should be taken. This includes not putting the HIV diagnosis in ward books or on the cover on notes; gaining consent before disclosing HIV status to other health professionals, for example, if a patient is being referred for services in the community; knowing who the diagnosis has been disclosed to – a partner might not know, for example – and being wary of ‘corridor conversations’ and other ways in which disclosure could happen involuntarily. Physio involvement, including community follow-up, is important in encouraging independent living, particularly for those in the later stages of HIV infection. This may include continuation of rehabilitation programmes commenced in hospital or assessment of new problems identified in the outpatient clinic, says Rachael Moses. ‘There is still a stigma associated with HIV-positive patients and this can often cause a delay in patients accessing appropriate services. It is important to remember you cannot contract HIV from skin contact, coughing, sneezing or saliva. ‘If you are treating patients with HIV no additional precautions are needed. HIV patients should be offered all appropriate treatment techniques, including acupuncture as indicated,’ she says. ‘HIV-positive patients are often thought of as just having HIV-related problems. As therapists we should remember that despite a HIV diagnosis this patient group can present with diverse problems over their lifetime requiring input from physiotherapists.’
Clinical or academic physiotherapists interested in being involved in the Canada-UK HIV and rehabilitation research collaborative should contact Kirsti Duke at firstname.lastname@example.org‘ HIV in the United Kingdom: 2008 report’ can be downloaded at www.hpa.org.uk
My physio is the trigger and the inspiration
John, from London, who is HIV positive, has played a lot of sport in his life. This proved a mixed blessing when he contracted septic arthritis after being infected with Escherichia coli seven years ago. ‘I had to undergo three operations on my knees – it was a life-threatening illness and I was bedbound for three months. There were times when I didn’t think I’d walk again. ‘I’ve played a lot of sport, which meant I’d already done damage to my knees before the operations. But playing sport left me with fairly good upper body strength, which helped with the rehabilitation process.’ John credits the success of his long journey back to mobility to the physiotherapy support he received, and continues to receive. This involved inpatient sessions working on mobilisation, which got him to the point where he could use a wheelchair. Then, as an outpatient and through thrice weekly visits to the physiotherapy gym at Barts, he used crutches, then finally was able to walk without support.
He feels that it has helped that his physiotherapist specialises in HIV. ‘
There have been times when it’s been a learning curve for both of us – for example, HIV and septic arthritis aren’t a usual combination so we’ve had to come up with exercises which suit both. ‘The thing about HIV is that it creates the potential for opportunistic infections and I’ve had several chest infections, for example. One of the things to do with HIV is seize the day when there are good days and not to give up when there are bad days. ‘For me it’s important to be as independent as possible, and my physiotherapist understands this. She’s the trigger and the inspiration.’ John is now attending physiotherapy sessions to help with balance problems, again at a specialist unit at Barts. ‘I know that not everyone, everywhere in the UK, has access to the same help and facilities that I have in London. Hand on heart, I’d urge the powers that be to look to physio as a means of helping people to be the best they can be – I’m a big fan of physiotherapy and it’s benefited me considerably.’
The Canada-UK HIV rehabilitation research collaborative held its first meeting in London in October. The group has been set up to address what many see as a research deficit around HIV and physiotherapy. It is largely made up of clinicians, including occupational therapists, from both countries. A leading member of the group is Kelly O’Brien, a lecturer in physical therapy at the University of Toronto, who has conducted reviews of research into the effects of exercise for people living with HIV/Aids. She was lead author, for example, in work published in 2004 that found that aerobic exercise alone or combined with progressive resistive exercise for at least 20 minutes, four times a week, might be beneficial for adults with HIV/Aids, but acknowledged that the research had small sample sizes and large dropout rates.1 In 2008, a systematic review and meta-analysis of randomised trials into the effects of progressive resistive exercise in adults living with HIV found that it appeared to be safe and might be beneficial for medically stable adults living with HIV.2 The London meeting looked at the research done so far, and participants discussed the types of research that would be useful and what funding might be available. ‘We felt it would be a useful collaboration because in Canada there is a lot of research expertise, whereas in the UK, we have more experience on the clinical side,’ explains Kirsti Duke. ‘What we do know is that there isn’t a lot of research out there, so we’re looking at ways of putting that right.’
1 O’Brien K et al. ‘Effectiveness of aerobic exercise in adults living with HIV/Aids’. Medicine and Science in Sports and Exercise (2004), 36: 10 2 O’Brien K et al. ‘Effects of progressive resistive exercise in adults living with HIV/Aids: systematic review and meta-analysis of randomized trials’. Aids Care (2008), Jul; 20, 6, 631-53
Number of subscribers: 0