Priorities for HIV care: the perspectives of healthcare providers and patients

Michael Carter
Published: 02 November 2015

Virological suppression and co-morbidities are the main focus of consultations between HIV healthcare providers (HCPs) and their patients, according to results of a study conducted by NAM and presented to the recent 15th European AIDS Conference held in Barcelona. Almost 90% of HCPs said the main focus of appointments with patients taking antiretroviral therapy (ART) who had a detectable viral load was treatment adherence. For people taking ART who had an undetectable viral load, discussions primarily focused on co-morbidities.

The research also gathered data on patients’ experiences of interaction with HCPs. Almost half reported difficulties interacting with health professionals and over a third said they used the internet when seeking information about the management of HIV.

HIV is now a chronic, manageable infection. Poor communication between people living with HIV and healthcare professionals has been associated with sub-optimal treatment outcomes. 

Investigators at NAM in collaboration with other researchers therefore designed a study to examine what European HCPs considered to be the priority subjects for consultation with the people living with HIV in their care. A parallel survey examined the opinions of patients concerning their interaction with HCPs.

The research was conducted between October 2014 and June 2015. A survey with 29 questions about communication between HCPs and patients was distributed to HCPs.

A total of 292 HCPs responded. The majority (85%) were located in western Europe, 5% were in eastern European EU countries and the remaining 10% worked in non-EU countries in eastern Europe, the Middle East or Central Asia.

Over half (55%) of respondents stated that they were physicians who specialised in the treatment of HIV; 22% were HIV nurse specialists; 7% were pharmacists and 7% GPs. Most (71%) reported that consultations with HIV-positive patients took place in hospital settings.

The main focus of consultations differed according to the virological status of patients.

When viral load was detectable, between 84 and 87% of HCPs reported that treatment adherence was the principal focus of discussions. Potential side-effects (43 to 53%) were also an important subject for consultations, as were possible treatment options (40 to 67%). Almost half (48%) of HCPs in western Europe reported that quality of life was an important subject of conversation in consultations with patients whose viral load was detectable, but only a fifth to a quarter of HCPs in other settings reported that this was a priority. Drug and alcohol problems and new co-morbidities were important foci for consultations in non-EU countries.

Consultations with patients with an undetectable viral load tended to focus on new co-morbidities (60%-67%), but adherence (57%-87%), potential side effects (47%-67%) and quality of life issues (33%-61%) were also important subjects.

The main challenges to effective communication were considered to be patients’ poor understanding of HIV disease and its treatment (51%), cultural barriers (40%) and the shortness of appointments (40%).

HCPs were also asked to provide their opinion about the biggest challenge for the management of HIV-positive patients over the next ten years. For between 33%-66%, it was the ageing of their patients; 27%-53% said it would be limited budgets; long-term co-morbidities were a concern for 20%-50%. Other concerns included the low priority of HIV on the healthcare agenda, adherence and greater use of HIV treatment as prevention and of pre-exposure prophylaxis (PrEP).

When asked about the main barriers to effective multi-disciplinary care, 57% reported budgets and 47% lack of priority given to HIV in the policy agenda.

Half of HCPs thought that educational workshops were the most valuable tool to facilitate the improvement of patient outcomes, with 48% reporting HIV information websites targeted at patients.

The investigators conclude that HIV specialist doctors and nurse practitioners remain the main source of consultations and advice for patients. Cultural barriers and poor understanding of HIV disease and its treatment were important obstacles to effective consultations and need to be addressed.

Patient experiences

A total of 872 patients completed surveys about their experiences of consultations with HCPs. Half were men who have sex with men (MSM) and 88% lived in western Europe.

Just over two-thirds of patients had been taking HIV treatment for more than two years. Approximately half (45%) stated that they had an active role in their HIV care. Most patients (59%) turned to their HIV specialist when seeking information about HIV, but 37% used the internet.

A significant minority of patients (48%) reported difficulties interacting with their HCPs. Reasons cited included lack of communication between professionals involved in their care (45%), the shortness of time allotted to consultations (44%), lack of specialist knowledge among HCPs (30%), and a lack of personalised care (28%).

A similar proportion of patients and HCPs (48%) suggested that patient-focused websites could be a useful tool to improve communication between HCPs and their patients.

The investigators stress that almost half of patients have problems interacting with their HIV HCPs and that lack of communication in care teams is a major concern. Future programmes need to focus on empowering patients.

Reference

Thomson C et al. Identifying priorities for HIV consultations among healthcare providers (HCPs) across Europe: results of a pan-European survey. 15th European AIDS Conference (EACS), PE8/69, 2015.

Thomson C et al. Perceptions of healthcare providers (HCPs) and patients around the provision of HIV healthcare and HCP-patient communication: a NAM web-based survey. 15th European AIDS Conference (EACS), PE8/45, 2015.

NAM's coverage of the 15th European AIDS Conference has been made possible thanks to support from the European AIDS Clinical Society (EACS), Bristol-Myers Squibb, Gilead, Merck & Co., Inc., and ViiV Healthcare.

Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Together, we can make it happen

We can end HIV soon if people have equal access to HIV drugs as treatment and as PrEP, and have free choice over whether to take them.

Launched today, the Community Consensus Statement is a basic set of principles aimed at making sure that happens.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap
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