3 research outputs found
Quality of life in hidradenitis suppurativa: psychometric properties of HSQOL-24
P14
Introduction: Hidradenitis Suppurativa (HS) has been associated with impaired quality of life (QoL). There are various measuring systems to assess physical severity; however, there are no specific QoL questionnaires for this disease in the Spanish language.
Objective: To develop and validate a disease-specific instrument to measure QoL in patients with HS.
Methods: A literature search was carried out to prepare a semi structured interview for patients with HS, as well as a Delphi expert consensus among health professionals. The validation with a sample of 130 patients is presented. The preliminary validation of the HSQoL-24 was passed twice to a group of 30 patients with 30 ± 10 days of interval. The DLQI and the Skindex-29 were used for its validation.
Results: Cronbach alpha 0.87 indicates a good internal consistency of the questionnaire. The intraclass correlation coefficient (ICC) with the DLQI was 0.70 (p-value) (< 0.001), and 0.87 (p-value) (< 0.001) with the Skindex-29.
Conclusions: The HSQoL-24 is the first specific self-administered questionnaire to assess QoL in patients with HS in Spanish. It is user friendly and easy to. This study demonstrates the excellent properties of the instrument: comprehensibility, reliability (test-retest), internal consistency, validity, comparison with DLQI and SKINDEX-29, and discriminative capacity
Patient reported outcomes (PROS) in psoriasis patients
P20
Introduction: Psoriasis is a chronic skin disease with negative physical, mental and social manifestations. Method: We carried out a longitudinal and prospective study under routine clinical practice conditions. The objective of the study was to measure quality of life with the Short Form-36 Survey (SF-36) and correlate the results with clinical variables using the PASI and BSA in a group of 17 patients with moderate to severe psoriasis treated with Ustekinumab. Results: In the baseline evaluation we observed the following results: 35.3% reported physical malfunction, 64.7% debilitating pain, 82.3% poor health in general, 76.4% bad vitality, 88.2% social malfunction, 100% emotional malfunction and 82.3% poor mental health. At week 78 we observed the following results: 41.15% reported very good physical functioning, 76.1% no pain, 58.8% good general health, 58.8% very good vitality, 70%, 5% good social functioning, 70.5% good emotional functioning and 52.9% good mental health. Conclusion: We observed that the perception of patients with moderate-severe psoriasis regarding their health at the beginning of treatment with Ustekinumab was poor and that they experienced a significant improvement throughout the successive weeks of treatment
The psychological burden of skin diseases in Spain
P16
Objective: Atopic dermatitis affects patients’ quality of life (QoL) in many ways. It is important to analyze the impact that the disease produces in order to better define the healthcare needs of adult patients with atopic dermatitis. Patients and Methods: 14 adult patients with atopic dermatitis were interviewed. The qualitative interviews were semi-structured and supported by a simple script, which allowed a complete and flexible interview.
Results: Six affected areas of the patient’s life with atopic dermatitis were identified: economic, work-related, personal, psychosocial, clinical and relational. It is emphasized that atopic dermatitis has a great psychosocial impact on the adult patient, since it alters interpersonal relationships, generates rejection, stigmatization and social isolation, limits the patient in various areas and activities of their daily life or alters sleep, among others. The visible aspect, the itching-scratching cycle, the lack of awareness and ignorance of the disease, the lack of a definitive solution among the treatments and the side effects of some of them are of great concern. Conclusions: The QoL of the patients with atopic dermatitis is negatively affected and a holistic multidisciplinary intervention is necessary in order to mitigate the negative impact of the disease