Global Guidelines in Dermatology Mapping Project (GUIDEMAP): a systematic review of alopecia areata clinical practice guidelines

Dr Leila Asfour, et al. (2023)

Full text: https://academic.oup.com/ced/article/48/2/100/6765004

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It is estimated that 0.58% of adults in the UK have alopecia areata (AA) at any one time. It is also estimated that globally about 2.1% of people will get AA at some point in their lifetime. The total amount of years lost due to AA by people all over the world is also estimated using something called the ‘disability-adjusted life years’ (DALYs). For AA, the total amount of life years lost sits at 1,332,800 years (1.3 million years). This is higher than diseases like psoriasis and melanoma. However, despite the high burden of disease for AA, there are very few clinical guidelines compared to other diseases.

A clinical practice guideline (CPG) is a set of recommendations to optimise patient care. They are set by health governing bodies like the American Academy of Family Physicians (AAFP) in the US, and the National Institute for Health and Care Excellence (NICE) in the UK. The guidelines are based on systematic reviews, thorough reviews of all the scientific studies that have been published on one topic. They are also based on comparisons between different treatment options, weighing up the benefits and harms of each. CPGs may just give recommendations for the diagnosis, just for treatment, or both. Each country may also have a different set of guidelines.

The researchers searched for any CPGs they could find, in any language, and found a total of 7, in different languages. The CPGs found were not all the same, as some described best practice for treatment or diagnosis only, while others described the whole process of managing AA:

 

Brazil: CPGs for treatment

Russia: CPGs for treatment

Australia: CPGs for treatment

Japan: CPGs for diagnosis and treatment

Italy: CPGs for diagnosis and treatment

International: CPGs for diagnosis and investigations (composed by members from 5 continents)

International: CPGs for treatment (composed by members from 5 continents)

 

AGREE

They then analysed the texts of these guidelines for its strengths and weaknesses in three different ways. First, they used a test called the ‘Appraisal of Guidelines for Research and Evaluation (AGREE) II’, which is a standardised way of scoring CPGs. They scored each AA CPG on six things:

Scope and purpose – do they describe everything that is needed?

Stakeholder involvement – were all the right people involved in setting up the CPGs? (e.g. GPs, patients, different types of experts).

Rigour of development – the quality and how thorough the process was for setting them up.

Clarity of presentation – are they easy to understand and use?

Applicability – the things hindering or enabling the use of the recommendations, additional resources needed and costs.

Editorial independence – was there any influence from commercial partners, such as pharmaceutical companies, that may have caused the people setting up the CPGs to be biased in favour of or against certain treatments.

 

All guidelines scored low (~30-50%) on stakeholder involvement. Most also scored low on rigour of development and applicability (20-50%). Some also scored low (50-65%) on editorial independence, rigour of development or scope and purpose.

 

Red Flags

The authors of this paper also compared each CPG to a list of red flags, called ‘Lenzer’s red flags’. These red flags look for financial conflicts that may bias the people setting up the guidelines, and whether the process is done in a right and fair way. Out of a possible 8, the CPGs had an average of 3.4 red flags. All had at least one red flag.

US Institute of Medicine criteria

Finally, they compared the CPGs to the US Institute of Medicine criteria of trustworthiness, on 9 points: 1) transparency, 2) management of conflict of interest, 3) development group composition, 4) the way CPGs take results from systematic reviews, 5a) evidence foundations, 5b) rating strength of recommendations, 6) articulation of recommendations, 7) external review, and 8) updating procedures.

On average, 1.6 of these criteria were fully met by the CPGs. An average of 3.1 were not met by the CPGs. The Japanese CPG was found to have the highest number of fully met criteria, indicating the highest trustworthiness. However, all CPGs only partially met the criteria, as they only included dermatologists, except for one that included a hair scientist.

 

Discussion

Currently available clinical practice guidelines (CPGs) are of low quality and trustworthiness. The tools used to measure the quality and trustworthiness overlapped on some criteria, but this was decided was ok as it gave a more thorough critical appraisal across all domains. To translate the non-English CPGs, google translate was used, which may have led to nuances being missed. Any CPGs that were not freely available and were behind a pay-wall or not accessible were not included, so their quality is unclear. Overall, the CPGs scored poor on describing the process used to develop the guidelines, such as how they searched for scientific studies and how they reviewed the evidence. There was also a lack of appreciation for the perspective of patients, as there was more of a focus on the physical symptom of hair loss and trying to induce hair regrowth. There was not enough attention for the psychological impact of AA. There is not enough clarity on different options for treating AA, and not enough evidence on the effectiveness of current treatments, which means patients may all have very different experiences. Patients should be more involved in setting up these recommendations to guide what care outcomes would be acceptable and most important to individuals with AA.

The authors recommend that future groups developing CPGs for AA should describe their full search strategy, how external reviewers impacted the process, how different reviewers dealt with differences in opinion. There should generally be more transparency.

The CPGs also generally did not give enough consideration to allocation of resources and evaluation of costs. This may be especially important with new treatment options such as JAK inhibitors, or already used topical immunotherapies, as for these treatments it is important to consider follow-up appointments, training of personnel to deliver the treatment, safety precautions, and availability of facilities, which may not yet be in place in many countries.

The CPGs that were found were all from relatively wealthy countries. There is evidence to suggest that people of non-white ethnicity or those socially deprived may be more likely to get AA. Because of this, there are concerns that the right treatment options may be even more inaccessible in other countries that were not included in this study, as some might not have access to any clinical practice guidelines at all.

Conclusion

The quality and trustworthiness of current clinical practice guidelines is low. There was not enough transparency in the development process for these guidelines, and the perspective of patients was not considered enough. Future CPGs should use the available tools to develop better guidelines to improve treatment and care outcomes for patients.