|Developing HIV/AIDS Treatment Guidelines (UNAIDS, 1999, 43 p.)|
|Part 2: Developing valid HIV/AIDS guidelines|
|Steps in developing HIV/AIDS treatment guidelines|
In most countries the Ministry of Health will be responsible for setting up a committee or a group of persons to look into the development of an HIV/AIDS guideline. Sometimes this responsibility is delegated to the National Drugs and Therapeutics Policy Advisory Committee or to the National AIDS Control Programme. The guideline development committee should include people from different disciplines; their complementary skills will aid the development process.
There are three types of guideline development committees:
· internal groups which are composed entirely of clinicians who use guidelines;
· intermediate groups which include some clinicians who use guidelines; and
· external groups which include no clinicians3.
The size of these groups will depend on the number of topics or diseases selected for inclusion in the guidelines. Studies have established that guidelines produced using this grouping system lead to significant changes in clinical behaviour, however, guidelines developed by internal groups lead to less compliance4. This may be attributed to local guideline developers being less likely to conduct an extensive search for evidence, owing to a lack of resources when compared with a national guideline development process. Findings from implementation also suggest that guidelines from local groups are less likely to inspire confidence and credibility in peers than those developed by outsiders. This, however, is not always the case: in some cultures local groups have significantly more credibility and acceptance in their community than national ones.
The participation of clinicians and nurses with experience in HIV/AIDS care is critical to successful HIV/AIDS guideline development. As they may lack skills in the methodology of guideline development, review and assessment of clinical evidence, it is important also to include persons with these skills on the committee.
When available, experts from other disciplines should be included in the development efforts. Their participation will contribute to the quality and credibility of the guideline. For example, economists could estimate the cost implications of guideline implementation, and social workers could consider its impact on society. Counsellors could reflect the concerns of patients in relation to psychosocial problems and their impact upon clinical care and interactions with practitioners.
Various HIV/AIDS guideline development efforts around the world have used multidisciplinary teams. In the development of HIV/AIDS guidelines for the Caribbean, an ad-hoc committee to oversee the process was selected from the countries of the region. The participants included physicians, paediatricians, venerologists, microbiologists, an evaluation specialist and a dermatologist. A consensus workshop was later organized involving more experts (ward sisters, infection control nurses, a surveillance nurse and a psychologist). Their perspective was important in the finalization of the guidelines5.
The WHO guidelines for adapting HIV clinical management guidelines to country needs6 recommend a consensus workshop involving a maximum of ten persons. These include representatives from the national AIDS control programme, the Ministry of Health, nursing and medical schools, the essential drugs programme and the regional/district health officer. It is also suggested that representatives from relevant United Nations agencies participate in the workshops.
In the United States of America, guidelines for the evaluation and management of early HIV infection7 were developed by a multidisciplinary team of experts from medical and nursing professions, AIDS directors, AIDS researchers, health educators and counsellors. Their selection and appointments were made by the United States Agency for Health Care Policy and Research (AHCPR).
Involving HIV-positive individuals at the workshop stage may not yield much useful information as the discussion will tend to be very technical. It would be better to involve patient representatives or PWA groups. Unfortunately, PWAs and their representatives do not often participate, as the clinicians who decide on the participants tend to select medical staff. A more appropriate time to involve HIV-positive individuals, families and community representatives is when reviewing a consumer guideline. Information from these groups can be collected in focus group discussions, as was the case in the development of the United States guidelines for early HIV infection7.