In Brussels the BREACH seminar ‘beyond viral suppression’ took place (3-4 May), focusing on the Quality of Life of PLHIV, mainly focusing on the situation in Belgium.
Beyond 90-90-90: is there a problem?
Starting from some research results coming from Public Health England, that compared existing HIV related needs, health related needs and social/welfare needs, and demonstrated that HIV related needs are relatively low, but health and social unmet needs are high, the symposium focused on some research and experience coming from Belgium.
A first presentation focused on some preliminary results of a recent survey done by Sensoa about the needs of PLHIV. The results of the survey are not public yet, but the survey will be able to provide information on some of the topics discussed during this seminar.
During a round of interviews with 3 PLHIV, confirmation was given about the need of good support, within an environment that is free of judgment. Medical care is generally good within the specialized centers, but the social stigma remains challenging. Talking about topics such as sexual health, are not easy if there is no relationship of trust and an open mind.
Quality of Life (QoL) means different things for everyone. What is important is to create an environment of understanding, openness. Problems should be addressed openly to take away the feeling of shame, embarrassment.
The seminar highlighted the importance of prevention, a more pro-active approach (also within the communication between HCP and patient) and measuring of co-morbidities.
My Life project
In Antwerp the Institute of Tropical Medicine is running a project called ‘My Life’ whelps identifying needs using a questionnaire that focuses on 6 domains: physical level, psychological level, level of independence, social relations, environment and spirituality / religion / personal beliefs.
4 quadrants help to see where support is most needed, looking at planning and structure; information; personal guidance; supportive environment.
The project helps to better support patients. Patients are also directly contacted when the health care providers identified a need for support. The patient is free to see if they want to discuss things directly or rather not, but the project showed that all patients appreciated the direct contact.
Another presentation looked at the impact of nutrition on QoL and was provided by a dietician from St Pierre. Nutrition has a direct impact on issues such as overweight, diabetes prevention, underweight etc. that require a balanced diet.
Support in creating a balanced diet, needs to also look at possible barriers to get weight loss such as lack of activity, social context, stop smoking, pregnancy, medication increase etc.
What is also important when losing weight, is to make sure that people lose fat and not muscle mass. The presentation focused on a tool (Bio impedance analyser: BIA) that helps measuring the presence of fat mass compared to muscle mass, so that risks can also be better interpreted and predicted (e.g. cardiovascular risk).
People that are taken into support for weight loss and life-style changes, should be informed about the positive impact it can have. But things should be done in a feasible progressive way. It is not enough to say eat less and move more. One needs to go step by step, even if not at speed that you would want. Patients mostly know what is needed, but it is more difficult to change.
An instrument to support this process is the ‘intuitive eating approach’. You try to focus on all 5 senses to increase the pleasure in food. If you enjoy food more, you eat less. To identify the role of food and eating, questions are being asked about ‘How long does eating take’; ‘Do you eat in front of the screen?’; ‘Do you chew enough?’; ‘How do you feel along eating?’ People need to learn to eat with pleasure again.
Some elements identified were:
• Importance of social cohesion
• Impact of physical and mental health
• Importance of multidisciplinary teams
• Together everyone achieves more (TEAM)
• Refer patients to paramedic teams for prevention
• Promote full body composition measures
• Integrate sensory approaches
• Develop access to affordable physical activities and sports and medical prescription
Cardiorespiratory fitness (CRF)
Another presentation focused on another area of measuring called ‘cardiorespiratory fitness’. The presenter called for more routinely testing as CRF is the 4th leading risk factor for CVD but it isn’t evaluated in clinical practice.
CRF is strong predictor of mortality as established risk factors such as cigarette smoking, hypertension, high cholesterol and T2DM and can be easily measured.
Higher levels of CRF reduce risk of dementia, Alzheimer disease; are associated with lower measures of anxiety and symptoms of depression; inverse associations between CRF and risk of pre-diabetes development. With higher rates there is less frailty as well. Lipodystrophy is a strong predictor of low CRF.
40% of PLHIV show very low CRF compared to non-HIV population.
Physical activity interventions improve CRF importantly. Improvement is better with better CD4 count. Moderate exercise is more effective than high intensity exercise.
How to measure QoL?
The KCE project focuses on Patient-reported Experience Measures (PREMS) and Patient-reported Experience Measures (PROMS) and how they can be of use within the Belgian setting.
More studies should be done to investigate the impact of PREMS and PROMS on all three levels (micro-meso and macro level).
There is also a need of better implementation of outcomes in real practice which isn’t seen enough. They should also be used more in decision taking.
Barriers are for example lack of knowledge, leadership; financial resources; operational aspects; technical aspects; methodological issues.
Facilitators could be clear objectives; leadership; patient involvement; support (technical, operational, financial etc.); communication and experience sharing; education
From facilitators towards action points one needs to:
define objectives; create governance structure; coordinate inititatives; inform stakeholders; create climate of trust, openness; provide resources; select appropriate PROMS/PREMs; collect data; analyse data.
PREMs and PROMS are still a field in development: local initiatives are not yet gathered in a network. There is limited experience for payment purposes. Top-down guide bottom-up initiatives are the most successful for changing practice
Patient reported measures in the HIV field: exploring the landscape
Some elements were confirmed in another presentation about PREMs and PROMS.
Many PREMs were set in the early days of the epidemic (before ART). There no validated measures for current HIV.
In recent years there is a clear increase of studies, mainly on 3 big categories: development and testing of instruments; intervention (impact of); correlation studies, for example the POPPY study (prevalence of pain and association with healthcare utilisation and QoL).
There are less studies about variations over time; or subpopulations QoL; or comparison comparing PLHIV with general population.
PREMs and PROMS are complementary. But PROM’s use in HIV clinical practice is still in very early stage. Both however could be used as a tool to guide the consultation and to screen.
While doing this however we need to realize that PROMS were developed to evaluate effectiveness of treatment; not to change practice. There are some limits in bringing it close to practice.
Value based HIV care: the patient perspective
The H-team did a cascade in Amsterdam. They showed how in 2015 they already had a much higher level of suppression than other countries. They also have a low percentage loss of follow up.
They have an active track and trace program, actively contacting patients that don’t show up.
They develop a care path (patient-centered; focus on valuable parameters). This ‘Value-based healthcare (VBHiC)’ provides feedback to the team; process improvement; balance costs/payments.
They focus on 3 phases in care:
• Tier 1 Health status achieved
• Tier 2 Process of recovery
• Tier 3 Sustainability of health
The Health care path is developed based on this model. PROMS are being collected via online survey (eventually on paper if necessary).
• New stigma scale is needed, based on today’s reality
• On many parts PLHIV score less than general population
• PLHIV have high level of HADs (hospital & anxiety depression score)
The high level of high HADs was surprising as mental health was often not really discussed with patients (27% high HADs score). So it showed that a high number of cases were not even discussed within clinical practice. Also: Those not filling in the questionnaire, might be the ones most in need.
They also saw a level of stigma within health care settings, which let them to see how they could help how institutions can be de-stigmatized?
They currently see more patients, with less visits and less cost: but quality improved and allows also to spend more time on those really in need of support.
They are involved in the development of the happi-app (eHealth). This app contains QoL elements (e.g. smoking status ).
Pozqol qualitative findings
Some preliminary results were presented following the QoL survey carried out by Axel Vanderperre. His ageing project aims at developing behavioural interventions and provide online learning tools. These would help to explain lifestyle issues such as diet; exercise and help to explain test results.
The survey performed shows that anxiety is omnipresent; fatigue; concentration; intimacy and sexuality; fear of being alone; psychological and physical frailty.
More than 80% are worried about their health; 50% feel they have limits and another 50% are not optimistic about their future.
There are many social challenges/health challenges/psychological challenges and peer support remains important, as well as lifestyle management.
The development of integrated ICT solution for self-management is a goal, which should be offered as a managed service.