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In these findings, the FamilyPso tool was validated for assessing psoriasis burdens on family members in multiple countries.
A newly developed PRO tool known as ‘FamilyPso’ is effective in its assessment of the burden to partners and family members of those living with psoriasis, according to recent findings.1
This analysis, demonstrating the feasibility of FamilyPso as an assessment tool across multiple countries, was authored in part by Ulrich Mrowietz, MD, from the department of dermatology at the University Medical Center Schleswig-Holstein’s Psoriasis-Center in Germany.
Mrowietz and colleagues highlighted that different societies in different countries may vary in their perceptions of psoriasis, but stigmatization is an important issue for individuals with chronic and visible skin conditions. They added that stigmatizing behavior is an issue in the public, in partnerships, and in families.2
“The aim of the FamilyPso international study was to validate this instrument in a large cohort and to assess its suitability to be used in different countries/societies in a prospective manner,” Mrowietz and colleagues wrote.1 “For this purpose, dermatology centers in six countries were engaged in the study. Demographics of patients and partners were recorded, in addition to psoriasis-specific data.”
The investigators carried out their analysis within several dermatology clinics in 6 countries: Canada (Peterborough, Hamilton), Austria (Graz), Germany (Essen, Kiel), Spain (Madrid, Pontevedra), Italy (Bologna, Verona), and Turkey (Bursa, Edirne). They conducted their international study as a forward-looking, multicenter investigation.
At each participating site, those involved committed to collecting 50 completed FamilyPso questionnaires. The FamilyPso tool's purpose is to evaluate the emotional burden experienced by partners of individuals living with psoriasis, as opposed to placing the focus on traditional health-related quality of life (hrQoL) metrics. Although the tool's questionnaire was initially developed in German, it was translated into English for the purposes of publication.
Participants living with psoriasis were asked for consent to distribute the FamilyPso and an accompanying demographic form to a cohabitating partner. These individuals agreed that their partners would finish the survey independently, without their presence or input. The investigators provided pre-paid envelopes so the partners could return the completed forms directly to the study's aforementioned locations.
The FamilyPso materials were professionally translated for the purposes of expansion, into European Spanish, Italian, and Turkish. Such translations also involved cognitive debriefing. The investigative team sldo translated additional materials such as patient and partner information sheets as well as demographic forms, into the necessary languages.
The team used confirmatory factor analysis (CFA) for the purposes of validating the questionnaire's factor structure and evaluating measurement consistency across the different gender and language cohorts. They assessed variations among subgroups, examining how psoriasis severity correlated with burden scores among partners via a mixed-effects regression model.
Overall, there were 556 subjects included in the investigators' final study population along with their partners. All subjects consented to having their partners fill out the survey independently and return to their clinics. Disease severity among the subjects was distributed as follows: 57.6% were shown to have mild psoriasis, 31.5% to have moderate disease, and 10.9% to have severe disease. Average ages of patients as well as partners was noted as 51 years. The researchers added that 91.3% of participants were undergoing therapy for their disease.
CFA was found by the investigative team to have largely validated the questionnaire’s original factor structure, and only minor adjustments were found to have been necessary. Across 4 out of 5 domains, study subjects who reported viewing their psoriasis as more severe tended to have partners who expressed significantly greater emotional burden experiences.
This was especially found to be evident in the domain of "general emotional strain," which included such feelings as helplessness. The investigative team's data suggest that the FamilyPso is a reliable instrument for capturing the emotional effects of psoriasis on one's family and is suitable for utilization in an array of differing cultural and linguistic contexts.
“In conclusion, the data of the FamilyPso international study validated the FamilyPso questionnaire, induced minor modifications in the settings of the five domains, and provided a sound basis for its further use in clinical studies,” they concluded.1
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