Psoriasis and its impact on close relatives and partners of patients – A cross‐sectional questionnaire study

Abstract Background Little is known about the exact impact of psoriasis on the disease burden of close relatives and partners of those affected by the disease. Objectives The aim of this single‐centre cross‐sectional study was to evaluate the quality of life in psoriasis patients and the impact of disease on partners and close relatives. Methods 250 plaque‐type psoriasis patients (58.4% males and 41.6% females) with mostly treatment‐controlled disease (mean PASI of 1.7 and Dermatology Life Quality Index (DLQI) of 4.1) were recruited from the Psoriasis Registry Austria (PsoRA) and their close relatives and partners were invited to participate in the study. Patient Family Impact Score (PFIS) was calculated from the FamilyPso questionnaire data to establish categories of disease burden in close relatives and partners. Results Valid FamilyPso questionnaires were returned from 153 (61.2%) close relatives and partners. Correlation analysis revealed a significant association between PASI and DLQI (r = 0.512, p < 0.001), PASI and PFIS (r = 0.228, p = 0.006), and DLQI and PFIS (r = 0.210, p = 0.014). An at least small or larger impairment of life quality (DLQI ≥ 2) was observed in 46.7% of psoriasis patients, despite treatment. A small or larger disease burden was detected in nearly 78.7% of the male and 77.3% of the female relatives and partners quantified with categorized PFIS. Conclusions The study revealed a significant impact of patients' psoriasis on the disease burden of close relatives and partners, depending on the severity of PASI and extent of quality of life disruption in patients. The gender of the relatives and partners had no impact on the PFIS.

2014, the World Health Organization highlighted the psychological burden of this disease based on stigmatisation and inadequate treatment, 6 showing that this overall burden significantly reduced the quality of life of patients suffering from psoriasis. 7In fact, Rapp et al. 8 showed an even higher impairment of health-related quality of life in psoriasis patients as compared to patients suffering from internal chronic diseases, such as myocardial infarction, congestive heart failure and cancer.Stigmatisation is common in psoriasis and prejudices often occur against patients with visible skin changes like psoriasis. 9For instance, Sommer et al. demonstrated that the majority of participants of telephone surveys did say that they did not want to get in touch with psoriasis patients.Thus, interventions reducing stigmatisation are necessary. 9Weinberger et al. reported about effectiveness of structured short intervention against stigmatisation by measures such as self-reflection, education, and contact between people and psoriasis patients. 10pecifically designed questionnaires can be used to reliably assess the quality of life of psoriasis patients by measuring social, physical and psychological aspects of their lives.These tools provide fundamental assistance and important information about the patients' potential therapeutic adherence. 7The social environment and especially psychosomatic stress events play crucial roles in disease progression caused by emotional disturbance. 11Distressing events involving family members can increase mental disorders such as anxiety and depression in psoriatic patients. 12Several circumstances such as limitations in taking part in social activities, taking vacations and experiencing difficulties in performing everyday life activities diminish the quality of life of affected patients. 11These limitations also impact the close relatives and partners of these patients. 11,13In general, many studies demonstrate the psychosomatic burden of psoriasis in affected patients; however, data on the impact of this chronic inflammatory disease on close relatives and partners is limited.Therefore, in this study, we aimed to evaluate the impact of psoriasis on close relatives and partners.

| Study design
This study was conducted as a monocentric, horizontal, single-centre, cross-sectional questionnaire study to measure the impact of psoriasis on close relatives and partners.The study was performed between September and December 2021 and involved 250 chronic plaquetype psoriasis patients who presented at the outpatient clinic of the Department of Dermatology (Medical University of Graz, Austria) and their close relatives and partners.Patients aged 18 and above who had been diagnosed with chronic plaque psoriasis and their relatives and partners were eligible to participate.5][16] Self-reported plaque severity and the clinical calculation of PASI were used to determine disease severity.In order to collect detailed information about close relatives and partners, every enrolled patient was provided with a demographic partner report form and the FamilyPso questionnaire 17 and asked to ask their close partner or relative to participate in the study.A prepaid envelope was provided, enabling the patient to return the demographic partner report form and FamilyPso questionnaire to the study centre free of charge.This study was conducted in accordance with the Declaration of Helsinki and with the approval of the Medical University of Graz Ethics Committee (Ethic no.33-413 ex 20/21).FamilyPso questionnaires that were returned by the first 50 partners or relatives together with certain patient data were transmitted according to the study protocol to Ulrich Mrowietz (Psoriasis-Center at the Department of Dermatology, University Medical Center Schleswig-Holstein, Kiel, Germany), the principal investigator of the ongoing International FamilyPso study, for comparative analysis.All participating patients gave their written informed consent.

What's already known about this topic?
� Previous studies have shown that psoriatic the disease-burden has an impact of close relatives and partners of those affected by the disease.

What does this study add?
� The study revealed a significant impact of patients' psoriasis on close relatives and partners, depending on the severity of Psoriasis Area and Severity Index (PASI) and extent of quality of life disruption in patients.� The categorized impact of disease burden was larger in close relatives and partners than the impairment of quality of life in the patients when disease was mostly well controlled by treatment.� The gender of the relatives and partners had no impact on the Patient Family Impact Score (PFIS).

| Questionnaires
To quantify the disease-related impairment of life quality, the German version of the DLQI was used. 18The validated FamilyPso questionnaire 17 was used to determine the burden placed on partners or close relatives of psoriasis patients.This questionnaire consists of 15 items and can be specified into three subgroups (emotional, leisure and social domain).Three recapitulatory domains (emotional, social and leisure domains) can be categorised by using this self-assessment scale; the lower FamilyPso scores indicate a lower burden on the social environment. 17Each item spreads over a 5point Likert scale (0 = not true, 1 = somewhat true, 2 = moderately true, 3 = quite true, 4 = very true, or does not apply to me).Cut-off values for a normal-to-moderate (75 percentile) and a very high (90 percentile) psoriasisrelated burden on close relatives or family members were described. 17In order to generate a categorised disease burden on relatives and partners of psoriasis patients, points of answers on the 15 items of the Fam-ilyPso questionnaire were summarised to establish a PFIS with a theoretical maximum of 60.Taking into consideration the results of Mrowietz et al., 17 the categories of burden were defined as follows: 0-1, none; small, ≥2-<9; moderate, ≥9-<19; very large; ≥19-<28; extremely large, ≥28.

| Statistical analysis
The answer "not relatable to me" in the items of the FamilyPso was considered to be "not true", as intended.
However, this study also evaluated non-relatable items as missing values, consequently reducing the total number of available items (adjusted FamilyPso).The Spearman correlation coefficient was used to evaluate correlations among PASI, DLQI and PFIS.Students ttest or Mann-Whitney U test were performed to analyse differences in the DLQI and FamilyPso or adjusted FamilyPso regarding the patient's gender, the gender of the partners or relatives, concomitant arthritis or depression, body-site involvement (scalp, palmar and/or plantar, genital/inverse and nail involvement) and administered treatment.The analysis of variances or Kruskal-Wallis test with a Bonferroni post-hoc correction   was used to compare DLQI and FamilyPso in PASI severity groups (complete remission, PASI > 0 but ≤3, PASI > 3 but ≤10, and PASI > 10).Pearson Chi Square test was used to analyse distribution of comorbidities between participating patients and patients, whose partners/relatives responded to FamilyPso.However, FamilyPso was also calculated by excluding nonrelatable items and adjusting the dividend (adjusted FamilyPso).Statistical analyses were performed using SPSS V27.0 (IBM Corp. Armon, NY).Graphics were designed with Microsoft Office 365 (Microsoft Corporation, Redmond, USA).Statistical significance was set at p < 0.05.

| Characteristics of relatives and partners
Close relatives and partners from 154 psoriasis patients returned the close relative or partner report form and the FamilyPso questionnaire.Data from one close relative had to be excluded due to a missing FamilyPso questionnaire, resulting in total of 153 (61.2%) evaluable FamilyPso questionnaires (Table 1).The majority of responders were females (n = 75, 49.0%); males (n = 47, 30.7%), and the gender of the relative or partner was unknown in 31 cases (20.3%) (Table 3, Figure 1).Responders were mostly spouses (n = 82, 53.6%) or unmarried partners (n = 39, 25.5%), and the degree of relationship was unknown in 31 cases (20.3%).In one case (0.6%) the questionnaire was filled out by the patient's mother (Table 3).The age of the participating close relatives and partners ranged from 18 to 82 years.

| Treatment
Biologics were the most frequently administered treatment in this patient cohort (n = 192, 76.8%) (Table 1).Seventeen (6.8%) of the patients received oral drugs and 41 (16.4%) patients received topical treatment only.Similar rates were observed for patients whose relatives or partners returned the FamilyPso questionnaire.For detailed information and specific treatments, see Table 1.

| FamilyPso questionnaire results
The highest psoriasis-related burden reported by partners or relatives was found for the items in the emotional domain, followed by items in the leisure and social domains (Table 5).The highest scoring items were item 4 (feeling sympathy towards sick partner or relative due to their psoriasis) with a mean (SD) of 2.15 (1.42), item 9 (pain or sleeping problems experienced by relatives or partners because their psoriasis causes stress) with a mean of 1.30 (1.42), and item 10 (relative's/partner's psoriasis outbreaks cause stress) with a mean of 1.36 (1.49) (Table 5, Figure 3).The subgroup analysis revealed no significant differences in FamilyPso items regarding the presence of psoriatic arthritis, concomitant depression, administration of systemic treatment, PASI groups, plaque severity, or an involvement of nails, scalp, palms and/or soles, or genitals (Table 4).No differences in the single-item analysis were identified regarding the gender of the partners or relatives.The Spearman correlation analysis results revealed a correlation between PASI and PFIS (r = 0.228, p = 0.006) and between DLQI and PFIS (r = 0.210, p = 0.014).If we examine the categorised burden of disease in close relatives and partners, we observe a slight to very high burden of disease in overall 78.7% of male and 77.3% of female partners and relatives, as measured by PFIS (Figure 4, Table S2).

| DISCUSSION
Psoriasis not only impairs the patient's health-related quality of life but also the patient's social lives, ultimately causing a vicious cycle of mutual further impairments of life quality. 11,19This has been observed in several studies that closely associate the emotional burden to a negative impact on interpersonal relations, and even marriage can be influenced by psoriasis. 20herefore, the partner's or relative's burden must be reliably assessed and factors worsening it must be identified to be able to offer an effective holistic treatment approach in psoriasis patients.The recently introduced FamilyPso questionnaire provides a solid tool that can be used to measure the disease-related burden in partners or relatives of psoriasis patients. 21,22The importance of this field is also reflected in a prospective study using tildrakizumab to assess the impact of biologic treatment on the well-being of psoriasis patients and the burden placed on partners and relatives by psoriasis patients. 22verall in this study, we observed that 78.7% of male and 77.3% of female partners reported experiencing a small to an extremely high disease burden from their close relatives and partners, as measured by PFIS (Figure 4), whereas 53.3% of the psoriasis patients reported no impact on their health-related quality of live (DLQI 0-1) at the same time.Remarkably, a moderate to an extremely large disease burden was observed in 42.5% of the male and 42.7% of the female partners, whereas the impairment of DLQI in the categories ranging from moderate to extremely large in male and female patients was 26.1% and 27.2%, respectively.The emotional burden reached the highest score in our study (Table 5).Furthermore item 4 and item 10, both of which belong to the emotional domain, were among the items scored highest by partners and relatives in this psoriasis cohort (Figure 3 and Table 5).Single-item and domain analysis results revealed no significant differences regarding the gender of the partners or relatives (Table 5, Table 6).No significant differences were observed with regard to the psoriasis-related burden (as measured with FamilyPso) in relatives and partners regarding the involvement of certain body areas (i.e.scalp, nails, palms/soles or inverse/genital areas), arthritis, depression or systemic treatment.Adjusting the data used for the PFIS statistical analysis (as was done in a previous study for DLQI) by excluding the items with the answer "does not apply to me" (as was previously done for DLQI) 23 did not significantly change the study results (data not shown).

| LIMITATIONS
The cross-sectional design of this study aside, the low proportion of patients with PASI values > 3 or >10 pose a limitation to this study, as the sizes of these groups limited the power of the statistical analyses.The categorization of PFIS (similar to DLQI) yet needs to be validated in future studies.Moreover, a general limitation of the study is the source of the data from a registry.In registries such as PsoRA data from patients with moderate to severe psoriasis (treated with systemic drugs) predominate and thus do not allow extrapolations to patients with less severe manifestation of the disease.

| CONCLUSION
The results of this cross-sectional study indicate that the partners and close relatives of 2 out of 5 treated, and well responding psoriasis patients (with a mean PASI <2) still have a moderate to extreme disease burden (as measured by categorized PFIS), whereas only 1 out of 4 patients report moderate to extreme impairments in their quality of life, suggesting that the disease burden of relatives and partners is due to the susceptibility to psoriasis in the patients per se.

T A B L E 3 1
Characteristics of close relatives and partners.No. of close relatives and partners (%) Flow chart of the study design.

F I G U R E 2
Categories of Impairment in Dermatology Life Quality Index (DLQI).Level of impairment of patients assessed by DLQI divided by gender grouped by points in percentage.T A B L E 4 Subgroup analysis of Dermatology Life Quality Index (DLQI) and FamilyPso scores.

2 of 11 - GROSSSCHAEDL ET AL. T A B L E 1 Patient characteristics. Characteristic Overall population FamilyPso responders
No statistically significant difference was observed between the overall population and the FamilyPso responders (p = 0.88, Chi Square test).

Outcome Item 1 Item 2 Item 3 Item 4 Item 5 Item 6 Item 7 Item 8 Item 9 Item 10 Item 11 Item 12 Item 13 Item 14 Item 15
T A B L E 6 FamilyPso items.GROSSSCHAEDL ET AL.