Beyond the Patient: Quality of Life Impact on Family

In this feature interview, The Dermatologist met with Aaron Secrest, MD, PHD, MBA, to discuss the impact of skin conditions on patient family members in his recent study, “Quality of Life Among Family of Patients with Atopic Dermatitis and Psoriasis.”¹

Dr Secrest is a senior medical officer in dermatology at Christchurch Hospital in New Zealand. He is associated with the Farmington Health Center in Farmington, UT. His practice focuses on understanding what matters most to his patients and how his patients' skin issues affect their quality of life.

Our first question for you is, why did you and your team decide to conduct this study?

Dr Aaron Secrest:
 

It came from me just interacting with patients who usually bring a significant other or a parent in with them at the visit and realizing that eczema or atopic dermatitis and psoriasis both have huge impacts, not only on the patient, but it affects the whole dynamic of the household. Whether the person doesn't want to go out because their skin is flaring and they don't want to be embarrassed, which affects their significant other who does want to go out but doesn't want to go by themselves, to having to help put medication on their back, to the sex lives of our patients. I really wanted to dig deep and see how much this affects the whole household.

By understanding that better, it makes us better doctors because we're more empathetic. We understand that this is not just a few bug bites that we can clear up in a couple of days, but this is a condition that affects the day-to-day functionality of our patients and their lives. There are some data on how these conditions affect patient quality of life, but little on how household members are effected. The only data that we could find were mostly in kids with these conditions and how it affected their parents, such as parents having to take time off work for appointments or because the kid's skin is flaring up and they can't go to work because they need to help at home. I hadn't seen a lot of data on significant others in patients’ lives.

What lifestyle consequences were specifically associated with family members of patients with psoriasis and did this differ in families with a patient who has atopic dermatitis?

Dr Aaron Secrest:
The reason we combined these two conditions for the family members was because their answers overlap so much. Both conditions are chronic conditions. We don't have anything that just says, "Take this for 3weeks and you'll never deal with this rash again." You have flares and patients often know some of their triggers for flares, but other times there's this constant anticipation and anxiety of, "When's my next flare? I hope it's not this weekend, I have this big event coming up." And, of course, it happens that weekend. What we've found when we ask patients about their quality of life is we can usually clear up their rash so their symptoms get a lot better and their ability to perform their jobs and their schooling gets so much better. The thing that doesn't get better is their worry and their anxiety about their skin because they don't know when the next episode is going to be and it seems to happen at the wrong times.

What we found with the family members is that, even though the conditions are different biologically, they have similar impacts on the household because they both tend to require help with application of topical medications. They also help with getting patients to and from appointments and scheduling the appointments. But then there's the whole aspect of that interpersonal relationship and we tease a lot of that out with the direct quotes. We found some common themes of frustration and embarrassment and feeling helpless. This was a common refrain from our patients' family members as they said, "I can't fix this for them and I just want to take it away from them because I see how much they suffer.” They feel helpless because there's not much they can do to make it better for their loved one. Often when you start a new treatment, there's this period where it has to ramp up in the system to really start working and it's just this waiting period where both the patient and their family are holding their breath hoping that this one works and the patient will be able to get relief.

How are family members’ concerns affected by the emotional consequences in both the psoriasis and atopic dermatitis groups?

Dr Aaron Secrest:
These conditions can take a reasonable amount of time to get to the right physician and the right treatment. There was a lot of frustration with doctors or physicians saying, "What are they doing to themselves? Are they making this rash up? I've never seen this before; I don't know what it is." It can be frustrating for the patient if they’re not getting to the treatment that they need to help improve their situation. Some of the quotes that we had were just so heartbreaking because when a doctor hasn't seen psoriasis or it looks different from anything they've ever seen, they may be treating the wrong thing or they may just shrug their shoulders and say, "I don't know what to tell you, I've never seen this before. Just keep moisturizing and hopefully it goes away."

I had one patient who came to me as a last-ditch effort for him. He didn't acknowledge it at the time, but he had tried 4 or 5 different doctors and none of them had gotten him better or even really gave him a proper diagnosis. So when I got him his diagnosis and got him started on his medication, I saw him a month later and he and his wife were both crying, saying, "We finally had hope that if you weren't going to fix it or help it, you were not going to give up and just say, 'Sorry.' You were going to try working with others to get me relief." What I hope people take away from this is there's a huge emotional toll that we are rarely ever seeing in our 10 minutes with the patient.

Usually in the doctor's office, we see them putting on their best selves. A lot of patients don't want to sound like whiners or complainers so they're not going to unload and tell you how miserable this is. They're going to say, "Oh, it's going okay." I've had many significant others or family members say, "You complain about this all the time, don't say it's okay to the doctor. They need to know that it's really bothering you so they can be more aggressive with the treatments if it's appropriate to be." I think the emotional consequence is that this doesn't really affect the patient alone, it affects everyone who loves and spends time with that patient and they get reflected emotions of despair or frustration that can contribute to their own emotions.

How are relationships between family members and patients affected? Do these differ between psoriasis and atopic dermatitis?

Dr Aaron Secrest:
Just yesterday I had a mom in tears with me because one of her children has severe atopic dermatitis and she said, "This takes all my time to apply and reapply topical medicine, to moisturize all the time, and I feel like I'm a bad mother because I'm neglecting the other kids." She felt horrible, and I tried to explain to her, "This is temporary, we can calm this down." I find allowing a patient to express this or their family member to just voice it and get it out there is so therapeutic to at least acknowledge that this happened and have someone say, "You're not a failure, you are doing the best you can and this is situational right now."

There's a lot of tension that happens if someone tells you not to do something. There's this defiance in us that we're like, "Don't tell me what to do." That can be hard on marital relationships. It's hard in the parent-child relationship. A lot of our patients will be itching and the family says, "Stop scratching yourself." It just makes you want to scratch yourself even more just out of defiance. This adds another layer of that complexity of our home life or relationships that can be annoying and negative. Another one of our quotes was this patient who would go into the bathroom so they could scratch all they wanted and wouldn't get yelled at for scratching in front of their family member in the kitchen or in the living room. That was their way of mitigating the negative interaction.

Several family members brought up that they'd had open discussions of, "Do we want to bring kids into this world because they may end up with your skin condition and I see how miserable you are?" And this is not something that was ever on my radar as a dermatologist, that people are looking at life planning based on this rash. The main benefit to qualitative research in my mind is it allows dermatologists who are very busy to have a window into what it would be like to sit with your patients for an hour rather than 5 or 10 minutes in the room. If you could talk to this patient for an hour, here's some of the things that may come out of that discussion. It opens your eyes to the whole world of what your patients are experiencing.

Are there any tips or insights you'd like to share with your colleagues regarding the impacts of AD and psoriasis on the family?

Dr Aaron Secrest:
My big takeaway is that the person in the room with the patient needs to be acknowledged sometimes too. Especially if they have a decent role to play in whatever treatments or conditions you are dealing with. Validating this person can go a long way to improving patient adherence to treatment because they may be more incentivized or willing to help out if someone at least heard their perspective that this is hard and time consuming.

I had one significant other who said that she did not like putting the medicine on the patient’s back because even though she knew it wasn't infected, it looked infected and so it just worried her to put it on. By letting her express that and then reminding her, "This is not at all contagious, but it's really helping to clear it up," I was able to validate her so she would be more willing to do it in the future. If you just ignore that person, you're missing a big portion of managing the patient because you're only focusing on one spoke in the wheel.

Reference
1. Snyder AM, Brandenberger AU, Taliercio VL, et al. Quality of life among family of patients with atopic dermatitis and psoriasis. Int J Behav Med. Published online May 26, 2022. doi:10.1007/s12529-022-10104-7