LifePlus - Web HIV Support

posted: 07/02/2011

Life Plus is a new website that hopes to transform how people live with and manage HIV for life. Life Plus is a fresh set of online, face to face and telephone personalised support tools for people living with HIV in the UK.

It’s been created by the Elton John AIDS Foundation (EJAF), Terrence Higgins Trust (THT), people with HIV, along with input from George House Trust and National Aids Manual.

There are around 86,500 people now living with HIV in the UK, and around 7,000 more are diagnosed every year. Life Plus should help take some of the pressure off HIV clinics by offering people with HIV support for living more independently, and longer and healthier lives, while HIV clinics focus help on the people who most need this.

Life Plus aims to support existing NHS HIV clinic care with face to face support, in the parts of the UK with the highest rates of HIV – Manchester, Brighton, Birmingham, Glasgow, and Cardiff. In each of these cities clinic-based health trainers will provide one-to-one support so people can become experts in all aspects of managing and living well with HIV.

The new website, myhiv.org.uk, provides interactive services to suit different people’s needs, including:
 

• privately and securely storing information to help track and manage your health and treatment better
• reminders for your clinic appointments
• forums to help you build HIV support communities and swop support
• online counselling and advice
• supporting HIV action campaigns

Watch YouTube of the interactive parts of the website

Life Plus has tailored versions specially for Africans, gay men, young people and everyone 

Sign up

To get the most out of the site and before you can use some of the sections (like the forums), you need to register. You register at a secure (https) webpage.

Anyone with HIV in the UK can register.  

Web and video conferencing at some clinics

For people who don’t have the internet at home (or on mobile), THT is working with some HIV clinics to offer free internet access to this website and video conferencing, so people can talk to experts while still at the clinic.

 

Elton's welcome

Sir Elton John, Founder of the Elton John AIDS Foundation said: “In many ways, the UK response to prevention and treatment of HIV has led the world. I am proud to be launching a new era in HIV services, delighted to be working with THT again, and hopeful that this approach may see opportunities for the management of other long term chronic conditions.”

Anne Aslett, Executive Director of EJAF said: “ When some 30% of HIV patients in the UK who attend their first clinic appointment don’t return, and challenging ARV therapy can result in unplanned treatment breaks, we were looking for a programme that could really help people begin treatment if they needed it and stay adherent for the long term. Life Plus does this in a very flexible and responsible way that also complements and supports healthcare providers.”

Sir Nick Partridge, Chief Executive for Terrence Higgins Trust said: “Life Plus is a very exciting new type of service provision and comes at a critical time to support the increasingly high numbers of people living with HIV in the UK. HIV is a complex condition so it’s vital that people get the best possible level of support, accessible in a multitude of ways, to ensure they remain healthy.

“HIV service providers and clinicians across the country have been fundamental in shaping Life Plus and these services have been designed to reach people in both rural and urban areas, whether they’re newly diagnosed or have been living with HIV for many years. Thanks to the Elton John AIDS Foundation these services will revolutionise support for people with HIV, helping them to manage their health and treatment more effectively.”

 

Harm of Symptoms Ignored

posted: 08/10/2010

Symptoms are common among people with HIV, and when they are ignored, as they often are by doctors, symptoms worsen people's taking of HIV treatment and lead to more risky sex.
Physical and psychological symptoms are highly common among people with HIV in the UK says a new report in the online issue of Sexually Transmitted Infections.
Physical and mental distress is high especially for people having unprotected sex with a partner of an unknown or different HIV status, and when people are struggling to take HIV treatments properly.
 

Symptoms unnoticed and untreated
From the moment of HIV infection, HIV is associated with a high rates of distressing symptoms. The World Health Organization recommends that controlling pain and symptoms should be an essential part of HIV care.
However, research suggests that doctors often do not detect the symptoms, and that many people with HIV have untreated pain and other symptoms.
 

How common are symptoms and what happens?
Investigators in London and south-east England were concerned that symptoms were being overlooked. They wanted to see how common symptoms were and if having symptoms was linked to differences in HIV treatment-taking, unprotected sex, and telling sex partners about HIV status.
So in 2005-06 778 patients took part in the study looking back at any symptoms over the last seven days.
 

Study participants were asked to provide basic information about themselves (age, gender etc) and to say if they had experienced any of 26 physical or psychological symptoms in the past seven days. The distress caused by symptoms was scored on a scale of 0-4. Those taking HIV treatment were asked to report their level of adherence in the previous week. All were asked if they had had unprotected sex with a partner who was HIV-negative or of unknown status in the previous three months, and if they disclosed their HIV status to partners.
 

Who are they?
Most (66%) of the people in this study were gay or bisexual men and were white (67%). The mean age was 40 years. A little over half (51%) of patients were born in the UK, and 45% had a degree.
Taking treatments – lots to improve
Over two-thirds (67%) of people were taking HIV treatments, and most people are not taking HIV treatments very well. Complete adherence to treatment was reported by 42%; partial adherence by 36%; and poor adherence by 22%. A third of people taking treatment had changed their HIV combination once and 40% reported multiple treatment changes.
 

Risky sex
A total of 11% of patients reported unprotected sex in the previous three months with a partner who may have been HIV-negative, and 6% had never disclosed to a sex partner
 

Symptoms all over
Symptoms were highly prevalent. The mean number of reported symptoms was 18. The mean symptom physical distress score was 0.81, the mean psychological distress score was 1.34, and the global distress score was 1.16.
Lack of energy was reported by 71% of patients, tiredness by 68%, difficulty sleeping by 62%, poor concentration by 61%, worry by 70%, sadness by 66%, diarrhoea by 54% and sexual problems by 53%.
 

Educated, white – less symptom harm
Having a university degree was associated with less symptom-related physical, emotional and overall distress.
In addition, white patients reported less symptom related distress than those of other ethnicities. The investigators think that this could be because many black African patients in the UK are diagnosed late when they are already ill and experiencing symptoms.
Telling others easier with few symptoms; more symptoms leads to risky sex
Disclosure of HIV was significantly associated with fewer symptoms, and reporting unprotected sex with a partner who may have been HIV-negative was associated with a greater number of psychological symptoms.
“Interestingly”, write the investigators, “currently being on antiretroviral therapy was not significantly associated with any of the symptom measures.”
 

Those on treatment
Then they looked at only the people taking HIV treatment. Poor adherence was significantly associated with psychological and global distress. Switching treatment was associated with both physical and psychological distress caused by symptoms, as well as a greater number of total symptoms.
Being born in the UK and having a degree were both associated with a lower burden of physical symptoms.
“The data…reveal high 7-day prevalence and associated distress of burdensome symptoms”, comment the investigators, who conclude: “It is essential that quality management of HIV disease routinely assess these distressing problems, so that key outcomes of risk behaviour and adherence may be optimally influenced.”
 

Source

Reference
Harding R et al. Symptoms are highly prevalent among HIV outpatients and associated with poor adherence and unprotected sexual intercourse. Sex Transm Infect, online edition, 2010 (click here for access to free abstract and paid-for full text).

Better Psychological Support Needed

posted: 15/09/2010

People living with HIV are not having their psychological needs met properly, says a new report by NAT (National AIDS Trust).

The report Psychological support for people living with HIV  shows that not getting adequate psychological support can have a severe impact on people's health and well-being. Anxiety, depression and other emotional and mental health problems are all far more common among people with HIV than is usual for people.

NAT says more must be done to give proper support – at present these needs are often overlooked, because the focus is mainly on signs of physical health, like CD4 counts and Viral Load.

People with HIV at George House Trust helped 

People with HIV met at George House Trust to help NAT understand mental and emotional support health needs better, and to talk about the experience of using services.

At George House Trust we gathered black African men and women. Positively Women (now Positively-UK) gathered women, and GMFA gathered a group of gay men. Altogether 32 people talked about emotional and mental health needs and services for people with HIV with workers from NAT. 

Experiences of the immigration system and the impact of these on emotional and mental health were a big issue in Manchester. Women at Positively Women talked a lot about peer support from other women with HIV, and the gay and bi men at GMFA talked about their experience of using mental health services. 
 

There were four main issues leading to the need for support :

• managing HIV - coping with diagnosis, telling others, and coping with the physical effects of HIV and treatment; how poor emotional and mental health affects taking treatments properly; services for older people with mental health problems such as HIV-related dementia
• psycholigical impact of having HIV - anxiety, depression, suicidal thoughts, stigma, low self-esteem, coping by drinking heavily
• managing relationships - telling people, help during a relationship crisis, help with forming relationships, being isolated, bereavement, negotiating safer sex
• the needs of migrants especially asylum seekers - the harm lengthy uncertainty over immigration status causes.

What forms of emotional and mental health support are there?

• HIV support organisations - peer support and meeting with others like yourself is highly valued, where it is available
• HIV clinicians - HIV clinicians rarely ask how people are coping emotionally
• NHS psychological support services - some good experiences but a great deal of frustration about long waiting times, severe cases only being helped, everything has to be strictly HIV-related when many serious issues are indirectly connected
• Counsellors - can be very helpful, but some bad experiences; waiting times and travel costs were problems
• Informal support - from partners, friends, family, community - for gay men this was their main source of support; for women and Africans this can be good or a problem
• Other support - Social Services seen as only for the dying, support from churches can be good or harmful, the internet's potential 

Deborah Jack, Chief Executive of NAT, says:

“People can often find it difficult to come to terms with an HIV diagnosis and deal with the ongoing implications. Psychological support can be as important for the health and well-being of someone living with HIV as going to the doctor or taking treatment. This form of support can be the crucial difference between finding every day a struggle, and feeling able to cope with and enjoy daily life."

"Providing such psychological support is more cost-effective in the long-run as it means that people living with HIV can manage their condition, take treatment properly and stay healthy. It is essential that, at this time of cuts, decisions are not made which may save money in the short-term but will increase the burden on the NHS in the long-run.”

Key findings from the report include:

• Evidence of higher rates of psychological need amongst people living with HIV, compared with the general population
• HIV and mental health problems are both highly stigmatised, and this often makes people even more unwilling to say they are having mental health difficulties
• The psychological needs of people living with HIV are not being met fairly across the whole NHS
• Investing in psychological support for people with HIV has significant benefits in the long-run for individual and public health.

Mark (not his real name), who is living with HIV, spoke about the impact of having a mental health problem:

“They reduce our immunity… If you are carrying so many things in your head there is no way you’re going to cope with your medication. So it comes back to HIV.”

Clinical Benefits

There are clinical reasons why psychological support is beneficial. Research shows the big impact that mental health can have on physical health and how someone copes with having HIV. For example, depression has an effect on how well someone takes HIV treatment properly which is essential. Psychological well-being also influences people’s behaviour, and depressed, anxious and upset people are more likely to have unsafe sex, drink too much and use drugs.
NAT argues that investing in better psychological support for people living with HIV saves money in the long run, not only because people will be healthy for longer, but also because people are then less likely to miss medication or have unsafe sex, and this reduces the risk onward HIV transmission to other people.
 

Psychological Care Standards for HIV
One of the recommendations of the report is that the British Psychological Society and others interested publish standards for psychological support services for people with HIV. The British Psychological Society has formed a working group to prepare these standards, and NAT is a member of this group. For more information about these standards or to order hardcopies of the report contact policyandcampaigns@nat.org.uk.

A copy of the report is going to each HIV clinic in the UK, funded by the drug company Abbott.

“Mental health has become a major focus for Abbott's HIV community engagement. Despite the advances in and access to treatments, many people living with HIV tell us that the psychological burden of the disease significantly compromises their quality of life. NAT's report will help inform all stakeholders about the need to consider the psychological impact of living with HIV on the quality of life and, consequently, health care provisions,” said an Abbott spokesperson.

The report is available here

and to download direct from NAT, with more information on HIV and psychological issues 
 

Better HIV Treatment Taking

posted: 29/06/2010

Researchers at the London School of Pharmacy have started a £2 million programme to improve how people take HIV treatments. They found out earlier that within six months of starting HIV treatment, more than one third of people were not taking HIV treatments properly.

Taking HIV treatments properly is tough for some people. For HIV treatments to work properly, you need to take all your HIV medicines at the right time, and every day. Missing doses means HIV will become drug resistant and the treatment will stop working properly.
 

The pharmacists are keen not to blame people for not taking HIV treatments properly, and instead want to understand things from the point of view of the person taking them, and find ways to give better support to each person.
 

Lead researcher, Rob Horne said “Health practitioners have a duty to facilitate informed choice about ART and to support optimal adherence in the long term. This research programme will provide an evidence base to help clinicians do this,” Professor Horne added. Pharmacists already know that not taking treatments everyday seems to make sense to people who don’t have any symptoms, or who want to avoid side effects, or when people are worried that the drugs may cause harm, or make you dependant.
 

They also hope this 5 year study, funded by the National Institute for Health Research, will help pharmacists improve treatment taking by people with several other long-term conditions, including asthma, inflammatory bowel disease, bipolar disorder, chronic kidney disease, renal transplant and epilepsy.
 

Treatment taking information and help

If you want more information about taking HIV drugs properly NAM have a useful booklet called adherence and resistance that you can download free and iBase also have useful guides here
If you want to talk about this with one of our advisers, please call 0161 274 4499 or email an adviser

Source

Time Makes Treatment-Taking Easier

posted: 01/04/2010

Taking HIV treatments gets easier the longer you take HIV antiretroviral therapy, London investigators report. Of over 2000 patients in London who have been treated for up to nine years most took their HIV treatments properly and got 2% better each year at taking the HIV treatments.

“These encouraging observations have implications for our understanding of the likelihood that patients will be able to maintain sufficient levels of adherence for a lifetime”, comment the investigators from London’s Royal Free Hospital.

95% Adherence Target
Very high levels of adherence (at least 95%) are needed to achieve and maintain an undetectable HIV viral load. 95% means you can only miss one dose a month if you take one dose a day, or you can miss up to 3 doses if you take treatment twice a day. If you miss more doses of HIV drugs than this the viral load rises, HIV can become resistant to the drugs, CD4 count falls and there is a bigger risk of illness and even death.

Treatment Taking Doesn’t Drop
Some earlier studies seemed to show that the longer you take HIV treatment, the worse you become at taking it. But those were small studies for short periods. Investigators at the Royal Free Hospital in London decided to do a bigger study, for longer. The Treatment taking – adherence – of 2060 patients was monitored every six-months. Adherence is measured here by the proportion of days in the six months where the person was protected by antiretroviral drugs. The study covered people for around 4.5 years – some people for up to nine years. Most were male (78%), white (66%), and maintained an undetectable viral load for the whole time (79%).

92% were protected by their treatment
Median coverage of HIV treatment during the study was 92%. This remained stable throughout the study.

Getting better all the time
Far from declining, there was a trend suggesting that adherence increased the longer a patient received treatment, by around 2% a year.

Taking treatment problems and successes
Some people do find taking HIV treatments much more problematic – for example black heterosexual men. They suggest, “this is likely to relate to socioeconomic and migration status, characterised by more difficult access to care, and perhaps less access to information”. George House Trust would suggest that it is probably much more to do with HIV stigma and perhaps being in some ‘denial’ about having HIV, although poverty and migration problems don't help.

People who have had three or more virologic treatment failures were much less likely to be taking treatments properly than people who kept their viral load undetectable.

As you get older your treatment taking gets much better. They suggest older people are more likely to attend their clinic appointments and “are more aware of the negative clinical effects of low adherence.”

Some treatments easier to take
Combinations with boosted atazanavir (Reyataz) or boosted saquinavir (Invirase) were taken better. This is probably because of fewer side effects with the newer HIV drugs – treatment taking was usually poorer in the earlier years.

Treatment drop out follows adherence problems
There is evidence that poor adherence levels predicts people who may drop out from clinics. People with poor adherence (below 60% drug coverage) were significantly more likely to be lost to follow-up than those with the best levels of adherence.

Getting better
The researchers found that almost half the people struggled with adherence at least once – but then got over the problem.

“We found no evidence of a decrease in average levels of adherence to HAART [highly active antiretroviral therapy] over time, and even some evidence of a small increase”, comment the investigators.

The levels of adherence observed in the study fit with the high proportion of patients with an undetectable viral load in the cohort.

Could people get by with under 95% adherence?
Some researchers have suggested that with newer HIV drugs, people might get away with taking treatments less than 95% of the time. But the investigators suggest that the highest possible level of adherence should always be the target. This not only means that there is a very low risk of treatment failure and resistance, but also suppresses HIV levels in genital secretions, thereby reducing the risk of sexual HIV transmission.

“Adherence to antiretroviral therapy is generally high in routine practice and does not have a tendency to decline over…long periods, providing encouragement that maintenance of adherence for a lifetime may well be possible’, conclude the investigators.

Need help with HIV treatment adherence? These may help, or call your HIV clinic, or call our services team

Adherence and resistance booklet (NAM)

Online adherence course - USA site

Treatment passport to help you keep track of taking treatments, side effects, CD4, VL

Source with reference