Impacto psicosocial en adultos con dermatitis atópica: estudio cualitativo

Antecedentes y objetivo La dermatitis atópica afecta a la calidad de vida del paciente de muchas maneras. Por tanto, es importante analizar los efectos que la enfermedad produce en la vida del paciente al objeto de definir mejor las necesidades de atención de los pacientes adultos con dermatitis atópica. Pacientes y métodos Se realizaron entrevistas a 14 pacientes adultos con dermatitis atópica. Las entrevistas cualitativas fueron semiestructuradas apoyadas en un guion simple, lo que permitió una entrevista completa y flexible para un mayor nivel de profundidad y riqueza de datos. Resultados Se identificaron 6 esferas afectadas de la vida del paciente con dermatitis atópica: económica, laboral, personal, psicosocial, clínica y relacional. Se destaca que la dermatitis atópica tiene un gran impacto psicosocial en el paciente adulto, ya que altera las relaciones interpersonales, genera rechazo, estigmatización y aislamiento social, limita al paciente en diversas áreas y actividades de su vida cotidiana o altera el sueño, entre otros. Preocupan mucho el aspecto visible, el ciclo picor-rascamiento, la falta de concienciación y desconocimiento de la enfermedad, la ausencia de una solución definitiva entre los tratamientos y los efectos secundarios de algunos de ellos. Conclusiones La calidad de vida de los pacientes con dermatitis atópica se ve afectada negativamente y se hace necesaria una intervención profesional desde un abordaje multidisciplinar holístico que intente mitigar el impacto negativo de la enfermedad. Background and objective: Atopic dermatitis affects a patient''s quality of life in many ways. Analysis of the effects of this disease on the lives of adult patients is therefore important for the purpose of better defining their care needs. Patients and methods: We interviewed 14 adult patients with atopic dermatitis in this qualitative study. The interviews were semistructured according to a simple outline to allow for completeness and flexibility and afford greater depth and richness of information. Results: Atopic dermatitis affected the patients’ lives in 6 spheres of activity: economic, occupational, personal, psychosocial, clinical, and relational. A clear finding was that the disease has a considerable psychosocial effect on adult patients, altering their interpersonal relationships and leading to rejection, stigmatization, and social isolation. It limits the patient in various spheres of life and in activities of daily living, causing sleep alterations among other effects. The patients were very concerned about appearance, the itch–scratch cycle, poor understanding and lack of awareness of their disease, the absence of a definitive treatment, and the adverse effects of some treatments. Conclusions: The quality of life of adults with atopic dermatitis is negatively affected. This disease requires a professional, holistic, multidisciplinary management approach that attempts to mitigate the adverse effects

Psychosocial burden in adult patients with atopic dermatitis

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

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

Quality of life in hidradenitis suppurativa : Validation of the hsqol-24

Altres ajuts: reports grants, personal fees, non-financial support and other from Abbvie, Almirall, Amgen, Boehringer, Celgene, Janssen-Cilag, Leo Pharma, Lilly, MSD-Schering-Plough, Novartis, Pfizer and UCB, outside the submitted work. TGC reports personal fees from Lilly and Novartis, outside the submitted work. LP reports grants and personal fees from AbbVie, Almirall, Amgen, Boehringer Ingelheim, Celgene, Janssen, Leo-Pharma, Lilly, Novartis, Pfizer, Regeneron, Roche, Sanofi, and UCB, personal fees from Baxalta, Biogen, Fresenius-Kabi, JS Biocad, Mylan, Sandoz, Samsung-Bioepis, and Bristol Myers Squibb, outside the submitted work. The other authors have no conflicts of interest to declare.To date, there are no disease-specific instruments in Spanish to assess quality of life of patients with hidra-denitis suppurativa. A multicentre study was pre-viously carried out in Spain between 2016 and 2017 to develop the Hidradenitis Suppurativa Quality of Life-24 (HSQoL-24), a disease-specific questionnaire to assess quality of life in patients with hidradenitis suppurativa. The objectives of this study are to revali-date the HSQoL-24 in Spanish with a larger sample of patients, and to present the English version. In this multi centre study in Spain, patients with hidradenitis suppurativa completed the HSQoL-24, the Dermatology Life Quality Index and the Skindex-29. The Hurley staging system was used to assess the severity of the disease. Validation of the questionnaire was carried out in 130 patients, of whom 75 (57.7%) were women. This study demonstrates adequate values of reliability and validity of the HSQoL-24, confirming the previous test re-test validation and making this questionnaire one of wide clinical validity in terms of results perceiv-ed by patients

Impacto psicosocial en adultos con dermatitis atópica: estudio cualitativo

Antecedentes y objetivo La dermatitis atópica afecta a la calidad de vida del paciente de muchas maneras. Por tanto, es importante analizar los efectos que la enfermedad produce en la vida del paciente al objeto de definir mejor las necesidades de atención de los pacientes adultos con dermatitis atópica. Pacientes y métodos Se realizaron entrevistas a 14 pacientes adultos con dermatitis atópica. Las entrevistas cualitativas fueron semiestructuradas apoyadas en un guion simple, lo que permitió una entrevista completa y flexible para un mayor nivel de profundidad y riqueza de datos. Resultados Se identificaron 6 esferas afectadas de la vida del paciente con dermatitis atópica: económica, laboral, personal, psicosocial, clínica y relacional. Se destaca que la dermatitis atópica tiene un gran impacto psicosocial en el paciente adulto, ya que altera las relaciones interpersonales, genera rechazo, estigmatización y aislamiento social, limita al paciente en diversas áreas y actividades de su vida cotidiana o altera el sueño, entre otros. Preocupan mucho el aspecto visible, el ciclo picor-rascamiento, la falta de concienciación y desconocimiento de la enfermedad, la ausencia de una solución definitiva entre los tratamientos y los efectos secundarios de algunos de ellos. Conclusiones La calidad de vida de los pacientes con dermatitis atópica se ve afectada negativamente y se hace necesaria una intervención profesional desde un abordaje multidisciplinar holístico que intente mitigar el impacto negativo de la enfermedad. Background and objective: Atopic dermatitis affects a patient''s quality of life in many ways. Analysis of the effects of this disease on the lives of adult patients is therefore important for the purpose of better defining their care needs. Patients and methods: We interviewed 14 adult patients with atopic dermatitis in this qualitative study. The interviews were semistructured according to a simple outline to allow for completeness and flexibility and afford greater depth and richness of information. Results: Atopic dermatitis affected the patients’ lives in 6 spheres of activity: economic, occupational, personal, psychosocial, clinical, and relational. A clear finding was that the disease has a considerable psychosocial effect on adult patients, altering their interpersonal relationships and leading to rejection, stigmatization, and social isolation. It limits the patient in various spheres of life and in activities of daily living, causing sleep alterations among other effects. The patients were very concerned about appearance, the itch–scratch cycle, poor understanding and lack of awareness of their disease, the absence of a definitive treatment, and the adverse effects of some treatments. Conclusions: The quality of life of adults with atopic dermatitis is negatively affected. This disease requires a professional, holistic, multidisciplinary management approach that attempts to mitigate the adverse effects