“To date, most research we have seen on psoriasis and atopic dermatitis (AD) has focused on the patient’s clinical experience, meaning that they are clinical studies with clinical measures made by physicians,” explains Aaron Secrest, MD, PhD. “However, few studies have examined the impact of psoriasis and AD on patients’ lives and QOL, and we only found a handful of studies that even considered the impact these chronic skin conditions have on the lives of people sharing a household with the patient. Therefore, our focus was primarily on patients’ significant others.”
For a study published in the International Journal of Behavioral Medicine, Dr. Secrest and colleagues led focus groups and held interviews with 23 individuals; 12 people had a family member with AD and 11 had a family member with psoriasis. Dermatology patients at his institution were asked to complete a Skindex-16 QOL assessment at every visit. “Based on their Skindex-16 scores, we have been able to ask more targeted questions to understand what was really going on in their lives,” Dr. Secrest says. “Patients then had an opportunity to open up about how much these conditions affect their lives. It gave us a better understanding of how psoriasis or AD affects them physically, functionally, emotionally, socially, and sexually.”
Listening to Patients’ & Family Members’ Concerns Was ‘Eye-Opening’
Since both psoriasis and AD are chronic, relapsing, and remitting skin conditions, responses were extremely similar among patients and significant others. “Our analysis identified common themes that emerged from the transcripts, and we included representative quotes from family members,” Dr. Secrest notes. “Although I grasped the pathophysiology of these conditions, I knew little about how these skin issues affected the day-to-day lives of my patients and every person in their household. It was eye-opening. If they are not dealing with a flare or rash or its symptoms and appearance, they are often worried about when the next flare will occur, as it often recurs at the most inconvenient times.”
These concerns, he adds, range from a spouse feeling guilty about her embarrassment over being seen in public with her husband during a psoriasis flare to family members frustrated at their inability to ease the discomfort of someone they love. “These skin conditions led more than one of our interviewees to decide not to have children because they did not want to pass the condition onto their child,” Dr. Secrest notes. “Additionally, I was surprised to learn how frequently these skin issues affected the sex lives of patients and their significant others. It truly shed light on the fact that we as physicians see just a tiny snippet of our patients’ lives unless we ask about it (Figure).”
Allowing Family Members to Share Concerns Is Therapeutic
Dr. Secrest and colleagues hope that physicians feel empowered by their research to not only acknowledge family members and significant others in the patient exam room, but also to ask them how their loved one’s condition is affecting their lives. “As a physician, there’s nothing magical I can do to fix these concerns, but allowing the family member or patient to share them can be very therapeutic in and of itself,” Dr. Secrest says.
Many dermatologists have tremendous time constraints in clinic, according to Dr. Secrest. “Having patients complete the Skindex-16 prior to seeing me enables me to use their scores as a springboard to ask targeted and appropriate questions that quickly lead me to the main issues affecting them. If we as physicians take the time just once a day to ask a few questions and really listen, we will create a connection with our patients that can improve adherence to treatments and remind us of our early passion and reason for becoming a physician—to heal and help.”
The study team concurred that there is a need for more of this type of qualitative research. “Since we do not have an hour to spend with each patient to learn what is truly going on with their skin condition, these qualitative studies can provide glimpses into the day-to-day struggles of our patients,” Dr. Secrest says. “We need to learn more about the impact these common skin issues have on our patients’ and their family members’ QOL. This can happen with qualitative work and with patient-reported outcomes research.”
