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The FamilyPso questionnaire revealed caregiver burden among partners and family members of patients with psoriasis, which could bolster shared decision making.

The burden of psoriasis extends beyond the patient to the caregivers who help to manage day-to-day symptoms. Ulrich Mrowietz, MD, explains that psoriasis “is a chronic disease, and a large amount of money and resources are wasted due to non-adherent behavior or lack of appropriate treatment and comorbidity costs.”

Although the challenges of care can impact all aspects of life, including physical, social, and emotional difficulties, there is very little data on the cumulative impact of psoriasis on family and partners who serve as constant care providers. What is known, however, is disheartening. One study has shown that in couples where one person has psoriasis, the partnership is more likely to end in divorce compared with couples who do not have psoriasis.

“To include partners/family/close friends is an overlooked opportunity to increase empowerment of those affected and to secure adherence. In addition, it lifts up wellbeing to a major extent,” Dr. Mrowietz says. 

Understanding Burden

To address this education gap, Ulrich Mrowietz, MD, and colleagues developed and studied a questionnaire titled FamilyPso, which gauges the burden on family and partners who serve as caregivers for patients with psoriasis. As chronicled in a literature review by Dr. Mrowietz and colleagues, published in the Journal of the European Academy of Dermatology and Venereology, the researchers conducted qualitative interviews with family members and partners of patients with psoriasis and embarked on a systematic literature review. An expert qualitative focus group reviewed the information gathered, and the resulting 15-item questionnaire was siloed into five domains:

• Social reactions;
• Cleaning;
• Acute emotional strain;
• Social life; and
• General emotional strain.

Through the analysis of the questionnaire, adjustments were made to organize the questions better. For example, it became apparent that the question, “The pain or sleeping problems [of patient/partner] cause me stress,” did not belong in the domain cleaning and was therefore moved to the domain of acute stress. This switch proved to be an improvement and a good fit for the model (χ²=180.4; df=80; P<0.001; confirmatory factor analysis=0.959; Tucker-Lewis Index=0.947; root mean square error of approximation=0.056; standardized root mean squared residual=0.067).

“With the FamilyPso questionnaire, it is possible for the first time to assess the burden to partners due to psoriatic disease. Not only is it an emotional burden, such as worry, but also an increased need for cleaning, which causes additional expenditures and further financial burden. The knowledge that partners and the close personal environment of patients are affected by psoriatic disease helps to tailor care much better than before,” Dr. Mrowietz clarified.

To test the effectiveness of FamilyPso, Dr. Mrowietz and colleagues developed a prospective cohort study spanning 11 centers in Austria, Canada, Germany, Italy, Spain, and Turkey. The American Journal of Clinical Dermatology published results from the study.

Disease Severity

Of the 559 caregiver participants, 59.4% were male, with a mean age of 51 years. The mean duration of the disease in the patient cared for was 21 years. The patients assessed the severity of their disease through self-report, resulting in 57.6% labeling themselves as mild, 31.5% as moderate, and 10.9% as severe.  The researchers noted that a higher burden experienced by the caregiver correlated with disease severity in all domains except social interaction. The applicability of this correlation was found to be present regardless of country (χ²=0.204; df=2; P<0.903). The steepest slopes in terms of correlation between disease severity and caregiver burden were in emotional strain and cleaning. Furthermore, it was noted that female partners had a significantly higher burden in the cleaning domain than male partners (M_f=1.20; M_m=0.88; t=2.70; df = 459; P<0.007).

There were some differences within the domains between the countries studied. For example, the Italian centers had caregivers reporting a significantly higher burden in terms of social reactions, acute emotional strain, and social life compared to the other countries. The demographic of smoking was found to have a higher score in the domain of social life (M_smokers=0.62; M_no=0.45; t=−2.06; df=511; P=0.04).

As for future research, Dr. Mrowietz said, “We have assessed the status [of FamilyPso] in a variety of countries from Canada, Europe, to Turkey. The results are very similar. A future focus could be on the entire family, including kids as well as friends. And how the inclusion of people nearest to those affected can be included in the shared decision-making processes.”

Dr. Mrowietz concluded by saying that “Partners, family, and close friends in the patient’s environment should never be neglected as they are a powerful source of support, information, and empowerment in maintaining care for chronic conditions such as psoriatic disease.”