gms | German Medical Science

18. Deutscher Kongress für Versorgungsforschung

Deutsches Netzwerk Versorgungsforschung e. V.

09. - 11.10.2019, Berlin

Disease burden and patient needs in emerging adults and adults with psoriasis: Addressing developmental specificities for person-centered healthcare

Meeting Abstract

  • Neuza da Silva - Universitätsklinikum Hamburg-Eppendorf, Institut für Versorgungsforschung in der Dermatologie und bei Pflegeberufen, Hamburg, Germany
  • Matthias Augustin - Universitätsklinikum Hamburg-Eppendorf, Institut für Versorgungsforschung in der Dermatologie und bei Pflegeberufen, Hamburg, Germany
  • Anna Langenbruch - Universitätsklinikum Hamburg-Eppendorf, Institut für Versorgungsforschung in der Dermatologie und bei Pflegeberufen, Hamburg, Germany
  • Alexandra Dankworth - Universitätsklinikum Hamburg-Eppendorf, Institut für Versorgungsforschung in der Dermatologie und bei Pflegeberufen, Hamburg, Germany
  • Rachel Sommer - Universitätsklinikum Hamburg-Eppendorf, Institut für Versorgungsforschung in der Dermatologie und bei Pflegeberufen, Hamburg, Germany

18. Deutscher Kongress für Versorgungsforschung (DKVF). Berlin, 09.-11.10.2019. Düsseldorf: German Medical Science GMS Publishing House; 2019. Doc19dkvf111

doi: 10.3205/19dkvf111, urn:nbn:de:0183-19dkvf1111

Published: October 2, 2019

© 2019 da Silva et al.
This is an Open Access article distributed under the terms of the Creative Commons Attribution 4.0 License. See license information at http://creativecommons.org/licenses/by/4.0/.


Outline

Text

Objectives: In industrialized countries, individuals from 18 years to late-twenties/thirties have extended opportunities to explore a variety of possible life directions in love, work and worldviews. On the one hand, the normative instability and risk behaviors may impact health self-management (e.g., increased medication non-adherence). On the other hand, health conditions may interfere with developmental tasks, particularly when they are visible and have significant impact on social and intimate relations. This study aimed

1.
to compare the disease burden and treatment benefits between emerging adults and older adults with psoriasis,
2.
to examine the impact of topical distribution of psoriasis in visible and sexually sensitive body areas on disease burden and treatment benefits in different age groups, and
3.
to identify age-specific patient needs and goals to be addressed in person-centered routine care for psoriasis.

Methods: Cross-sectional large-scale survey randomly assigning 157 dermatology practices/clinics in Germany (PsoHealth 2007). Clinical severity was assessed by the Psoriasis Area and Severity Index (PASI). Patients completed the generic EQ VAS (scores ranging from 0 = “worst health” to 100 = best health”), the Dermatology Life Quality Index (DLQI; scores from 0 = “minimum impairment” to 30 = “maximum impairment”) and the Patient Benefit Index (PBI; scores from 0 = “no benefit” to 4 = “maximal benefit”), as well as a high-resolution grid scheme of 1,424 squares on the topical distribution of psoriasis.

Results: The sample included 2,005 German patients with psoriasis: 282 emerging adults between 18 and 35 years of age (42.9% female) and 1723 adults older than 35 years (43.1% female). Adults had the psoriasis diagnosis for a reasonably longer time than the younger group (M±SD = 22.38±15.35 vs. 9.97±7.65; t = 12.99, p < 0.01). The mean PASI was 9.97±8.62 for adults and 11.04±9.83 for emerging adults (t = -1.88, p = 0.06). The topical distribution of psoriasis was significantly different across age groups: emerging adults had greater involvement of the scalp, face, neck and décolleté, while adults had more lesions in the anal area and fingernails. Controlling for disease duration and topical distribution, emerging adults reported better general health (EQ VAS) than the older group (M±SD = 67.06±21.77 vs. 63.69±22.10; F(1,1706) = 4.65, p = 0.03) but less patient-relevant treatment benefits (PBI; M±SD = 2.18±1.11 vs. 2.51±1.13; F (1,1764) = 6.15, p = 0.01). No significant differences between age groups were found regarding dermatology-specific QoL (DLQI; M±SD = 8.41±6.88 vs. 7.39±6.30; F(1,1773) = 1.31, p = 0.025). Regression analyses for the group of emerging adults explained 16%, 32% and 10% of the variance in general health, dermatology-specific QoL and patient benefits, respectively. For the group of older adults, 12% of the variance in general health, 15% of dermatology-specific QoL and 7% of patient benefits was explained. The results showed communalities and specificities between age groups: female gender, greater disease severity and psoriasis affecting the hands were associated with poorer patient-reported outcomes in both age groups; while shorter disease duration and genital involvement predicted more QoL impairments and less treatment benefits only for the group of adults, and the presence of lesions in the scalp, neck, décolleté and fingernails predicted lower general health and more QoL impairments only for the group of emerging adults. In addition, a similar pattern of specific patient needs was observed for both age groups, but emerging adults were more prone to underrate the importance of patient needs/treatment goals.

Conclusions: Emerging adults presented less disease burden but also less treatment benefits than older adults. The normative instability may result in increased difficulty in establishing concrete therapeutic goals and, consequently, perceiving patient-relevant treatment benefits. Regarding the topology of psoriasis, lesions in visible areas was a risk factor for decreased health and more QoL impairments in emerging adults, while genital psoriasis was associated with QoL impairments only for the group of older adults. The visibility of the health condition may result in stigmatization experiences, consequently affecting the identity explorations in emerging adulthood by reducing job, dating and social integration opportunities. Conversely, older adults are more likely to be in long-lasting relationships, which can be directly affected by genital psoriasis and consequent sexual dysfunction. These age-related specificities should be taken into account in routine healthcare for psoriasis either by assessing specific needs of emergent adults that might be not covered by general questionnaires and by helping them to define (and adhere to) concrete treatment goals. In adults, special attention to the assessment and treatment of genital psoriasis is recommended.