Study: Caring for loved one with psoriatic disease takes a toll
Not everyone in Christine Jones-Wollerton's family has psoriasis, but they all struggle with the disease.
"I always say that my psoriasis and psoriatic arthritis don't just affect me physically, but emotionally, socially and financially, too," said Christine, who has lived with psoriatic disease for more than 10 years. "Obviously that's affecting my family."
A new study, published in May in the Journal of the American Academy of Dermatology, confirms what patients and their loves ones have known all along: psoriasis can negatively impact the quality of life not just of people with psoriasis, but of the people who live with them, too.
The study, conducted at a dermatology clinic in Granada, Spain, assessed the impact of psoriasis using the Dermatology Life Quality Index (DLQI), which measures how the disease affects someone's daily life, and the Hospital Anxiety and Depression Scale (HADS), which measures the respondent's anxiety and depression levels.
Both surveys were completed by psoriasis patients and people who live with them. A control group of people unaffected by psoriasis also completed the HADS. Overall, 130 people participated in the study, including 34 people with psoriasis, 49 people living with psoriasis patients, and 47 controls.
Researchers found that almost 88 percent of people living with someone who has psoriasis experience an impaired quality of life, and their quality of life mirrors that of the patient. In addition, the findings also suggest that psoriasis patients and people living with them both experience high levels of depression and anxiety.
For Christine, the study validates what she and her family go through every day.
"I deal with depression and anxiety on a daily basis," she said. "I don't think someone can have a condition that affects quality of life as much as psoriasis can, and not have that impact your community of support."
Many factors affect the quality of life of patients and their communities, not just severity of the disease, said Eliseo Martínez-García, an author of the study.
"We should understand that in our clinic, we are not seeing psoriasis," he said. "Instead, we are seeing persons who suffer psoriasis, and the way in which every patient experiences this problem is very personal."
Most people don't understand how much psoriasis impacts the lives of everyone involved, according to Christopher Jones-Wollerton, Christine's husband."It's hard to explain, unless you're there all the time," Christopher said.
Getting Christine the treatments she needs is just one example of the challenges they face, he explained. In addition to the high cost, transportation and arranging child care for their three children can make going to the doctor's office difficult.
Christine thinks that the study is a step in the right direction toward addressing the needs of people affected by psoriasis. "Finding practical ways to support patients is the second step," she said, suggesting that hospitals and clinics offer support groups, education and therapy to patients and families.
"When we address the needs of the entire family, we're better able to support the person going through the condition," Christine said. "That just helps everyone all around."
June 19, 2014