Table 4.

Recommendations for assessment of disease and monitoring

How should disease activity and response to treatment be monitored in patients with HS?
The majority of the outcome measurement instruments used in HS RCTs lack substantial validation evidence. Furthermore, a validated measure for baseline severity assessment is also unexplored. This may hamper comparisons of HS trials investigating future treatment regimens	Consensus (100%) 0% range 1–3 0% range 4–6 100% range 7–9
Hurley staging is suggested by experts for assessment of baseline severity, especially with regard to the extent of scarring. It is, however, not a dynamic tool and so it should only be used to describe an area affected by HS (and not to define overall severity of disease). Each individual area affected by HS should be assessed independently (evidence level 5, grade of recommendation D).	Consensus (96%) 0% range 1–3 4% range 4–6 96% range 7–9
The HiSCR is supported by good‐quality validation studies and is recommended to be used as a dichotomous outcome measure in inflammatory areas under treatment66 (evidence level 2, grade of recommendation B).	Consensus (100%) 0% range 1–3 0% range 4–6 100% range 7–9
Patient‐reported outcome measures (e.g. DLQI, VAS) should be included in the overall assessment of the HS patient as they may offer important insight on functioning, quality of life and symptoms (e.g. pain and itching)63, 64 (evidence level 4, grade of recommendation C).	Consensus (100%) 0% range 1–3 0% range 4–6 100% range 7–9
The modified Sartorius score has been partially validated and can be used to assess severity14, 67 (evidence level 4, grade of recommendation C).	Consensus (96%) 0% range 1–3 4% range 4–6 96% range 7–9
How long should biologics be used in patients responding/not responding?
Adalimumab28, 29, 68, 69: In patients with <25% improvement in abscess and inflammatory nodule [AN] count after 12 weeks, treatment with adalimumab should not be continued (evidence level 2, grade of recommendation B). For patients who do not achieve HiSCR, but achieve a 25–50% improvement in AN count (partial response) after 12 weeks, consider continuing treatment and re‐evaluate after an additional 3 months (evidence level 2, grade of recommendation B). In the short term, studies show recurrence following discontinuation of treatment after 11–12 weeks (evidence level 4, grade of recommendation C). Long‐term (at least 1 year) continuous treatment maintains a level of consistent effectiveness in patient responders (evidence level 2, grade of recommendation B).	Consensus (92.6%) 3.7% range 1–3 3.7% range 4–6 92.6% range 7–9
Not enough published data are available for other biologics. Decisions about whether and how to continue treatment should be based on a close monitoring of patients and careful assessment of the risk : benefit ratio (evidence level 5, grade of recommendation D).	Consensus (96%) 0% range 1–3 4% range 4–6 96% range 7–9

DLQI, dermatology life quality index; VAS, visual analogue scale.