Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease with a high impact on quality of life. The development of disease-related measurement tools is an important step to improve the care of patients with HS.
The scarring, acne-like inflammatory process of HS occurring in the axillae, groin and perimamillary and perianal areas is one of the most stressful chronic skin diseases from the patient’s point of view and one of the most challenging from the point of view of care. A scientific team with the participation of Prof. Dr. med. Christos Zouboulis, Dessau, and Prof. Dr. med. Matthias Augustin, Hamburg, has developed and validated two new innovative standardized tools suitable for clinical practice, the HS-QoL and the HS-“Patient Benefit Index” [1,2].
Survey of disease-specific quality of life: HS-QoL
The QoL-HS was developed and validated for the standardized assessment of disease-specific quality of life (QoL) impairment in patients with hidradenitis suppurativa [1]. For this purpose, 72 patients with HS were initially interviewed in open text form about their stresses and therapy goals, and an item pool was formed. This was reviewed by a panel of dermatologists, psychologists and patients and translated into a 26-item questionnaire. Each item was examined for representativeness and suitability. The validation study determined the correlation with the HS-PGA*, EQ-5D**, DLQI, and number of inflammatory lesions instruments. Furthermore, the change sensitivity was determined.
* HS-PGA= Physicians’ Global Assessment of HS severity.
** EQ-5D=EuroQoL-5D
34 different items for the question “The burden of disease” were collected (n=74). The “top 5” were: Pain (57%), limitations in social life (47%), psychological distress (47%), limitations in mobility (41%), and limitations in leisure activities (33%). The top five patient-related treatment goals were pain reduction (71%), no more restricted movement (43%), no more inflammation (12%), scar reduction (8%), and weight loss (4%).
The validation study included 101 patients in 5 German HS centers. Correlation analysis showed positive correlations with DLQI (r=0.69, p<0.001), HS-PGA (r=0.21, p=0.036) and number of inflammatory lesions (r=0.22, p=0.026) and a negative correlation for EQ-5D (r=-0.49, p<0001). Responsiveness analysis showed a positive correlation with changes in DLQI (r=0.062, p<0.001).
Capturing patient-side benefits from therapy: HS-PBI
To evaluate patient reported outcomes in patients with acne inversa, a disease-specific instrument (HS-PBI) was developed and validated to assess patient-reported benefits in patients with hidradenitis suppurativa [2]. In the first phase, through open-ended interviews regarding patients’ treatment wishes and goals, a 26-item questionnaire was created, which was adapted through the cognitive interviews. The aim of the instrument is to assess the patient-side benefit of treatment for hidradenitis suppurativa. Patient needs were assessed at appointment 1, and achievement of those was asked at appointment 2 and related to each other.
The validation study was conducted at 5 German HS centers. 101 patients were included, of whom 68.3% were female. The average age was 39. Several parameters were tested: PBI showed good negative correlation with HS-PGA (Pearson correlation -0.471, p<0001) and DLQI (Pearson correlation -0.383, p<0.05). Change sensitivity analysis showed good negative partial correlation with DLQI (-0.396, p<0.001). In summary, the HS-PBI in proved to be a viable valid instrument. In addition to the patient-side benefit assessment of a treatment, the new measurement tool allows the needs of sufferers with hidradenitis suppurativa to be assessed, providing a basis for personalized and patient-centered care.
Congress: DDG Conference 2021
Literature:
- Kirsten N, et al: HS-QoL – new instrument to assess disease-specific quality of life in patients with hidradenitis suppurativa – results of the validation study. P233, DDG Conference, 14.4.-17.4.21
- Kirsten N, et al: HS-PBI – a new instrument to survey the patient-side benefit from therapy in patients with hidradenitis suppurativa – results of the validation study. P245, DDG Conference, 14.4.-17.4.21
- Kirsten N, et al: HS-Best – German multicenter registry for the evaluation of hidradenitis suppurativa (acne inversa) in clinical practice – methodology and baseline data. P046, DDG Conference, 14.4.-17.4.21.
DERMATOLOGIE PRAXIS 2021; 31(5): 25 (published 7/10/21, ahead of print).
