Shared Decision-Making in HS: How Treatment Choices Get Made With You

There is a moment in a lot of hidradenitis suppurativa (HS) appointments where the conversation stops being about the disease and starts being about a decision. Something is not working well enough. There is more than one thing that could be tried next. And the question arrives — sometimes explicitly, sometimes as a pause — of what happens now.

Two versions of that moment go wrong in opposite directions. In one, the decision is made for you, quickly, and you leave with a plan you cannot really explain to anyone including yourself. In the other, you are handed the whole thing: what would you like to do? — as though you were in a position to weigh options you have just heard about for the first time.

Shared decision-making — also called joint decision-making, or partizipative Entscheidungsfindung in German-language care — is the space between those two. It is not a soft communication skill bolted onto real medicine, and it is not a polite way of asking patients to prescribe for themselves. It is a specific division of labour: your clinician contributes the diagnosis, the medically appropriate options and what is known about how each one behaves; you contribute what you need treatment to change, and what you can actually live with. Neither half works without the other.

Educational content only. This article explains what shared decision-making means and how to prepare for it. It does not recommend any treatment, cannot tell you which option is appropriate for you, and does not replace an individual assessment by a clinician.

Key takeaways

• Shared decision-making applies when there is genuinely more than one reasonable option. In HS that is common, because options differ not only in how well they work but in how much they ask of you.
• It does not move medical responsibility onto the patient. Your clinician still determines what is appropriate, authorised and safe.
• People with HS report being less involved in treatment decisions than people with psoriasis — a difference measured across German dermatologyDermatology: The medical specialty concerned with diagnosing and treating skin conditions. Acne Inversa is often managed by dermatologists, although surgery and other specialties may also be involved.DermatologyThe medical specialty concerned with diagnosing and treating skin conditions. Acne Inversa is often managed by dermatologists, although surgery and other specialties may also be involved.Read more in the glossary settings, not a feeling.
• Decision support works on the quality of the decision: better knowledge, more accurate expectations, less decisional conflict. That is worth having on its own terms, and it is not the same as proving better disease outcomes.
• The most useful preparation is short: two or three priorities, what improvement would look like in daily life, and one question you do not want to leave without asking.

What shared decision-making actually means

Most descriptions of shared decision-making break it into three moves, and they are worth separating because appointments usually skip straight to the third.

First, naming that a decision exists. This sounds trivial and is not. Plenty of treatment changes happen without anyone saying out loud that there was a choice — which means nobody establishes that your view was relevant. A sentence as small as “there are a couple of directions we could go here” changes what the rest of the conversation is for.

Second, laying out the options. Not just what they are, but what each one asks of you: how it is taken or done, how often, what needs monitoring, what the realistic timeline to knowing whether it works looks like, and what is uncertain. In HS this often includes an option that is easy to forget is an option — continuing the current approach, or waiting, and reviewing again at a defined point.

Third, the actual decision. This is where your priorities do work that clinical evidence cannot do for you. Evidence can describe what a treatment does on average. It cannot tell you whether fewer dressing changes during a working day matters more to you right now than a slower, steadier reduction in new lesions.

International guidance treats this as ordinary good practice rather than an optional extra. NICE guideline NG197 sets out shared decision-making as a standard of care, including the expectation that people are supported to express what matters to them before options are narrowed down.

Why HS is a field where this matters more than average

Some medical decisions have one clearly correct answer. Many HS decisions do not, for three reasons.

The disease has several distinct problems at once. Inflammatory activity, pain, drainage and odour, restricted movement, wound care time, and established structural damage such as tunnelsSinus Tract: A tunnel-like channel under the skin that forms between abscesses or nodules. Sinus tracts indicate more advanced disease and can chronically drain fluid. They are associated with Hurley Stages II and III.Sinus TractA tunnel-like channel under the skin that forms between abscesses or nodules. Sinus tracts indicate more advanced disease and can chronically drain fluid. They are associated with Hurley Stages II and III.Read more in the glossary and scarring are related but not the same. An approach aimed at inflammation may leave structural damage untouched. A procedure aimed at a specific area does not address disease elsewhere. Which problem gets attacked first is a genuine choice, and it depends partly on which one is costing you the most.

Options differ in burden, not only in effect. Tablets, injections, procedures and surgical approaches all carry different demands: appointment frequency, monitoring, recovery time, what it does to your working week. Two people with similar disease can reasonably choose differently, and neither is choosing badly.

Patients and clinicians do not always start from the same emphasis. A qualitative interview study of 12 patients and 16 HS-experienced healthcare professionals found that both groups ranked effectiveness as the most important treatment attribute — but patients placed additional weight on pain management, and raised concerns the professionals did not spontaneously mention at all: access to HS specialists, practical wound-care guidance, and cost. If those things do not come up in the appointment, they do not get factored into the plan.

What the evidence actually shows

It is worth being precise here, because “shared decision-making improves outcomes” is a claim that gets made more loosely than the evidence supports.

Decision support works, across medicine. The 2024 Cochrane review of patient decision aids covers 209 randomised studies and nearly 108,000 participants across 71 different decisions. Compared with usual care, decision aids produced high-certainty improvements in knowledge, in the accuracy of people’s expectations about risks, and in reduced decisional conflict — both the “I don’t feel informed” component and the “I’m not clear what matters to me” component. Fewer people ended up in a passive, clinician-controlled role. There was no increase in decision regret. And the practical objection — that this makes appointments longer — did not hold: when the decision aid was used in preparation beforehand, there was no measurable difference in consultation length; when used during the consultation, it added about a minute and a half.

In HS specifically, the direct evidence is one small trial. An HS patient decision aid was tested against general HS website content in an online randomised trial. Forty participants were randomised, with roughly thirty analysed at each phase. The decision aid group showed greater knowledge, better preparation for decision-making and lower decisional conflict. The authors are explicit about the limitation: online recruitment through HS support groups limits how far the result generalises. It is a real result in the right direction, not a large one.

People with HS report less involvement than a comparable group. A prospective survey conducted between 2023 and 2024 across German dermatology settings — university centres and private practices — compared 124 people with HS against 133 with psoriasis. 27.2% of the HS group rated their involvement in treatment decisions as low, against 11.9% of the psoriasis group, and average perceived involvement was significantly lower (7.0 versus 8.4 on a 0–10 scale). Greater perceived involvement was associated with greater satisfaction with the treatments received. Two findings stand out for anyone preparing for an appointment: younger patients (18–40) reported lower involvement, and satisfaction with the information their dermatologist had given them about the disease was the factor most strongly associated with feeling involved.

That last point is the practical heart of it. Feeling involved was not primarily about being asked to choose. It tracked with having been given a clear enough picture of the disease to have a view in the first place.

Being cross-sectional, the study cannot establish direction: more involvement may produce more satisfaction, more satisfaction may make involvement easier to perceive, or a third factor — a clinician who explains things well — may drive both. It measures an association in German HS care, which is exactly the setting most readers of this site are in.

”Working” is not one thing

There is a specific mismatch in HS that makes goal-setting worth doing deliberately.

Clinical trials generally measure a defined reduction in inflammatory lesion counts. That endpoint exists for good reasons: it is objective, comparable across studies, and regulators need it. But the European discrete choice experiment — 219 adults with HS, asked to make repeated trade-offs between hypothetical treatments — found that the levels of effectiveness patients preferred were higher than the level most commonly used in HS trials. Given the ranges tested, effectiveness dominated at 47.9% of the decision weight, followed by pain reduction at 17.3%, risk of a mild adverse event at 14.4%, risk of serious infection at 10.3%, mode of administration at 5.3% and duration of benefit at 4.8%.

Two things follow. Pain reduction sat second, above both risk attributes — pain is not a side issue patients raise when there is spare time. And how a treatment is taken mattered far less than most people assume when they walk in worrying about injections.

Meanwhile the international consensus on what HS trials should measure — the HISTORIC core domain set, agreed through a Delphi process involving 41 patients and 52 healthcare professionals — is broader than lesion counts alone: pain, physical signs, HS-specific quality of life, global assessment and progression of the disease course, with symptoms strongly supported by patients as an additional domain.

None of this tells you what your goal should be. It tells you that “is it working?” is a question with several legitimate answers, and that deciding in advance which one you mean makes the follow-up appointment far more useful. If your goal was sleeping through the night and you never said so, the review will be about lesion counts.

Where preference decides — and where it does not

Shared decision-making is not universal. It applies to preference-sensitive decisions: situations with more than one medically defensible path where the right choice depends partly on the person.

It does not apply to whether something needs urgent assessment. Rapidly spreading redness, fever, a wound that is changing quickly, or signs of a systemic problem are not preference-sensitive — they need to be looked at. If you are not sure which category you are in, our guide on when to get medical help covers that distinction directly.

It also does not extend to overriding what is medically appropriate. A clinician who declines an option because your disease pattern, your other conditions, an interaction or an authorisation status makes it unsuitable is not failing to share the decision. The correct response is to ask why, not to treat the refusal as negotiable. Shared decision-making determines which of the appropriate options is chosen; it does not expand what counts as appropriate.

Some HS decisions are almost purely preference-sensitive. Surgical wound management is a clear example: healing by secondary intention versus a flap or graft closure involves a genuine trade-off between a longer healing period and a higher immediate complication risk, and reasonable people weigh those differently.

Three things worth deciding before you go in

Preparation for a joint decision is not the same as preparation for an information-gathering appointment. Our 15 questions to ask your dermatologist covers the second job well. This is the first.

1. What would you most want treatment to change? Not everything — two or three things. Fewer painful flaresFlare: A period of acute worsening in a chronic condition. In Acne Inversa, a flare may be triggered by stress, hormonal changes, friction, or other factors and can manifest as new nodules, abscesses, or increased pain.FlareA period of acute worsening in a chronic condition. In Acne Inversa, a flare may be triggered by stress, hormonal changes, friction, or other factors and can manifest as new nodules, abscesses, or increased pain.Read more in the glossary, less drainage, better sleep, being able to work a full week, less time spent on wound care, avoiding another surgical recovery, keeping the option of surgery open. Ranking them is uncomfortable precisely because everything matters; that is why doing it in advance rather than under time pressure helps.

2. What would you actually notice if it improved? “Less pain” is hard to review at a follow-up. “Pain stops waking me most nights” is not. This is your own functional marker, not a clinical measure — but it gives the next appointment something concrete to check against, alongside whatever your clinician measures.

3. Which trade-off do you want explained? Benefit against side-effect risk. Faster relief against longer-term control. Regular treatment against an occasional procedure. Recovery time against durability. You do not have to resolve the trade-off before the appointment. Naming which one you are stuck on is the useful part.

Our treatment consultation preparation guide walks through this in the browser and produces a one-page summary you can take with you; nothing you enter leaves your device. If you already track symptoms, your symptom tracker summary answers a different question — what has been happening — and the two work well together.

Sentences that make it a joint decision

The theory is easy; saying it in a fifteen-minute appointment is the hard part. These are phrasings that reliably open the conversation rather than sounding like a challenge.

• “Before we talk about options — the thing I most need to change is ___. Does that change what you would suggest?”
• “What are the alternatives to this, including doing nothing for now?”
• “What is this particular treatment mainly aiming at — the inflammation, the pain, the tunnels, or something else?”
• “How will we know whether it is working, and when will we look?”
• “What would make you change course?”
• “What is the burden of this on a normal week — appointments, monitoring, recovery?”
• “I would like to think about it. Can I decide at the next appointment, and is there a cost to waiting?”

That last one matters more than it looks. Deferring a decision is a decision, and asking explicitly whether waiting carries a cost turns a passive delay into a deliberate one.

When the conversation does not go that way

Appointments are short, some clinicians communicate more directively than others, and a person in pain is not always in a position to advocate. A few things that help without turning the visit into a confrontation:

Lead with the priority, not the question list. One sentence at the start about what you need to change does more than fifteen questions at the end, when there is no time left.

Put it on paper. A single page you hand over is harder to skip than a spoken list, and it survives the moment when you forget everything you meant to say.

Ask for the reasoning, not just the plan. “Why this one rather than the others?” is a question almost every clinician can answer quickly, and it converts an instruction back into a decision.

Ask what happens next if it does not work. This is the single most useful question in a chronic disease, because it establishes in advance that there is a plan B, and that a treatment not working is information rather than failure.

Consider who else is in the picture. HS care often involves more than one professional — dermatology, surgery, wound care, pain management, and others. Our HS care team page covers who does what and who is coordinating. If you are looking for someone with specific HS experience, the specialist directory is a starting point.

If a treatment decision feels significant and you are unsure, asking for a second opinion is a normal part of care, particularly before surgery or a long-term treatment change. It is most productive when you can say what specifically you are uncertain about.

Situations where it matters most

Before surgery. Surgical decisions in HS involve area, extent, closure method, recovery time and the possibility of recurrence. Preferences legitimately differ, and recovery burden falls on your life, not the operating list.

Pregnancy and family planning. Whether now, later, or hypothetically, this genuinely changes which options are on the table and when. It belongs in the conversation early rather than after a plan is set — our pregnancy and family planning hub covers what to raise. Do not change or stop a treatment yourself on this basis.

Young adults. The German survey found people aged 18–40 reported lower involvement than older patients. If that describes you, preparing in writing is a reasonable counterweight.

When something is not working. This is the appointment where goals matter most and are least likely to be discussed, because the conversation naturally focuses on what failed. Saying what is still working — even partially — prevents a useful part of the plan being discarded along with the part that is not.

What shared decision-making is not

• It is not choosing your own treatment, and not a transfer of medical responsibility.
• It is not a requirement to have an opinion. “I would rather you recommend, and explain why” is a legitimate position, and stating it is itself a shared decision.
• It is not an argument. Asking about alternatives is standard clinical communication, not a challenge to expertise.
• It is not a one-off. Priorities change as the disease and your life change; a goal set a year ago is worth revisiting.
• It is not something a website can do for you. No online tool — including ours — can weigh your disease pattern, your history and your other conditions to determine which treatment is appropriate. Preparation is the part that can happen outside the room; the decision is not.

The bottom line

HS treatment decisions are unusually preference-sensitive, and the evidence suggests people with HS are currently less involved in them than comparable patients with other chronic skin disease. The mechanism the German data points to is not that patients need to be more assertive — it is that feeling involved tracks closely with having been given a clear enough picture of the disease to hold a view.

You can act on both halves of that. Ask until the picture is clear enough to have an opinion, and arrive with two or three things you most need treatment to change. The clinical judgement stays where it belongs. What changes is that the plan is built around outcomes you actually care about, and that the next appointment has something concrete to review.

→ Prepare your treatment conversation — a private, browser-based way to sort out your priorities and questions before you go in.