gms | German Medical Science

Objectives: Treatment of chronic spontaneous urticaria (CSU) is based on evidence-based guidelines. However, specific patient needs and benefits from therapy have not been differentiated on the guideline level.

The current study was designed to use the first part of the PBI, the PNQ, to characterize specific patient needs in CSU. The following research questions were addressed:

1.

Which are the patient needs and treatment goals in CSU?

2.

Do patient needs and preferred goals in CSU differ according to sociodemographic (i.e., age group and sex) and clinical (i.e., disease duration) characteristics?

3.

To what extent (and in which age, sex and disease duration groups) is the health-related quality of life (HRQoL) impaired?

4.

How are the patient needs related to HRQoL impairments?

Methods: Cross-sectional study in four German outpatient dermatology clinics. Patient needs and potential therapy goals were determined with the validated Patient Needs Questionnaire (PNQ) in a specific version for chronic urticaria. Further instruments to characterize the link of patient needs and disease burden were disease-specific (CU-Q2oL), dermatology-generic (DLQI) and health-generic (EQ VAS).

Results: Data from 105 patients were analyzed (43.92 ± 14.96 years; 71.4% female). Among the most important therapeutic goals were the absence of visible skin lesions (92.3% important/very important), to be free of itching (91.5%), the desire to be healed of all skin defects (89.5%) and the desire for a clear diagnosis and therapy (88.6%). All 26 items were found to be quite important/very important by at least 30% of the respondents. Specific profiles of patient needs were found to be related to gender and disease duration. Regarding sex differences (30 male patients vs. 75 female patients), out of the 26 items, there was a significant difference in four of them, all rated as more important by women than by men. Specifically, significant differences were found for the needs of “to be able to accept oneself” (mean PNQ score 2.83 for women vs. 1.85 for men, Z = -2.38, p = 0.017); “to find a clear diagnosis and therapy” (3.86 for women vs. 3.43 for men, Z = -2.70, p = 0.007), “to be healed of all skin defects” (3.78 for women vs. 3.41 for men, Z = -2.81, p = 0.005); and “to be less helpless against the disease” (3.66 for women vs. 3.39 for men, Z = -2.32, p = 0.021). Out of the 26 items, there was a significant difference in three of them with regard to disease duration (< 1 year, n = 41; ≥ 1 year, n = 59). Patients with a disease duration of more than one year rated the following aim at a higher level: “to be able to sleep better” (mean PNQ score 3.60 vs. 3.21, Z = -2.21, p = 0.027). Higher needs in patients with a disease duration of less than one year were found for: “to be able to have a normal sex life” (3.14 vs. 2.15, Z = -1.99, p = 0.047) and “to be less burdened in partnership” (3.22 vs. 2.48, Z = -1.99, p = 0.046). Additionally, patient needs were weakly to moderately associated with quality of life. Pearson correlations showed weak to moderate significant correlations between increased patients’ needs and more disease-specific and generic quality of life impairment (Table 1). A higher number of patients´ needs were significantly correlated with urticaria-specific QoL impairment (i.e., CU-Q2oL values), while fewer needs were associated with QoL assessed with more generic tools, i.e. the EQ VAS and the DLQI.

Conclusion: Patients with CSU show a large spectrum of relevant needs and treatment goals. Further innovative drugs and patient-centered individualized treatment may increase overall benefits and provide added value. Regardless of the treatment chosen, shared decision making in the management of CSU should be the goal.