Topic 2: Start With the Patient’s Priorities

Do not begin with a treatment list. First determine what the patient most wants to change and what makes a plan feasible. A single visible lesion count may not capture the outcomes that matter most.

Ask about	Examples of what may matter
Symptoms and disease control	Pain, drainage, odor, flare frequency, new lesions, preventing tunnels or scars
Function and participation	Sleep, walking, sitting, exercise, intimacy, work, school, caregiving
Treatment experience	Prior benefit, adverse effects, treatment fatigue, wound-care burden, injections or procedures
Practical fit	Cost, insurance, transportation, refrigeration, dosing schedule, monitoring, time away from work
Life plans and values	Pregnancy intentions, competing health needs, privacy, acceptable uncertainty, pace of change

Qualitative research has identified treatment effectiveness, quality of life, pain, specialist access, and wound-care support and costs as important unmet needs and treatment attributes for people living with HS.²