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ImportanceCurrent measures of alopecia areata (AA) severity, such as the Severity of Alopecia Tool score, do not adequately capture overall disease impact.ObjectiveTo explore factors associated with AA severity beyond scalp hair loss, and to support the development of the Alopecia Areata Severity and Morbidity Index (ASAMI).Evidence reviewA total of 74 hair and scalp disorder specialists from multiple continents were invited to participate in an eDelphi project consisting of 3 survey rounds. The first 2 sessions took place via a text-based web application following the Delphi study design. The final round took place virtually among participants via video conferencing software on April 30, 2022.FindingsOf all invited experts, 64 completed the first survey round (global representation: Africa [4.7%], Asia [9.4%], Australia [14.1%], Europe [43.8%], North America [23.4%], and South America [4.7%]; health care setting: public [20.3%], private [28.1%], and both [51.6%]). A total of 58 specialists completed the second round, and 42 participated in the final video conference meeting. Overall, consensus was achieved in 96 of 107 questions. Several factors, independent of the Severity of Alopecia Tool score, were identified as potentially worsening AA severity outcomes. These factors included a disease duration of 12 months or more, 3 or more relapses, inadequate response to topical or systemic treatments, rapid disease progression, difficulty in cosmetically concealing hair loss, facial hair involvement (eyebrows, eyelashes, and/or beard), nail involvement, impaired quality of life, and a history of anxiety, depression, or suicidal ideation due to or exacerbated by AA. Consensus was reached that the Alopecia Areata Investigator Global Assessment scale adequately classified the severity of scalp hair loss.Conclusions and relevanceThis eDelphi survey study, with consensus among global experts, identified various determinants of AA severity, encompassing not only scalp hair loss but also other outcomes. These findings are expected to facilitate the development of a multicomponent severity tool that endeavors to competently measure disease impact. The findings are also anticipated to aid in identifying candidates for current and emerging systemic treatments. Future research must incorporate the perspectives of patients and the public to assign weight to the domains recognized in this project as associated with AA severity.

Background: Failed back surgery syndrome (FBSS) is a common and incapacitating condition affecting patients with previous spine surgery in whom treatment approach can be challenging. This study aimed to summarize existing secondary studies and up-to-date randomized clinical trials (RCTs) that assess the effectiveness of available treatment options for FBSS. Methods: Systematic searches were carried out in five databases (PubMed, Cochrane, Scielo, Epistemonikos, and Google scholar) for all systematic reviews on the effectiveness of treatment options for FBSS published after 2012. Outcomes of interest were pain levels measured through visual analog scale or numeric rating scale, Oswestry Disability Index, and quality of life. Methodological and risk of bias assessments were performed with the AMSTAR-2 tool for systematic reviews and the Joanna Briggs Institute checklist for RCT. Prospective PROSPERO registration: CRD42022307609. Results: Fifteen studies, seven systematic reviews, and eight RCTs met the inclusion criteria and fulfilled the methodological quality assessment. Of the 15 included studies, 8 were on neurostimulation, 4 on adhesiolysis, 4 on epidural or intrathecal injections, and 3 on other treatment modalities. The risk of bias was low in seven studies, moderate in five, and high in three. Conclusions: Based on this systematic overview and the considerable heterogeneity among studies, the FBSS therapeutic approach must be individualized. FBSS treatment should start with conservative management, considering the implementation of neurostimulation, a technique with the most robust evidence of effective results, in cases of refractory axial or neuropathic pain. As the last resource, in light of the evidence found, more invasive procedures or new surgical interventions are indicated.

Resumen: Antecedentes y objetivo: No se dispone de datos españoles sobre el coste asociado al linfoma cutáneo de células T (LCCT). Además, la incorporación de nuevos tratamientos hace necesario analizar el coste real de la enfermedad. El estudio MICADOS analizó dos objetivos principales: Por un lado, evaluó el impacto en la calidad de vida en los pacientes con LCCT, y por otro lado, estudió los costes de la enfermedad. En esta publicación se recoge el segundo de los objetivos del estudio. Métodos: El coste de la enfermedad se estudió bajo la perspectiva del Sistema Nacional de Salud (SNS) con un horizonte temporal de un año. Participaron 23 dermatólogos y hematólogos de 15 hospitales públicos españoles. Se incluyeron pacientes adultos con LCCT del tipo micosis fungoide (MF) y síndrome de Sézary (SS). Resultados: Se incluyeron 141 pacientes, el 57,4% masculinos, con una edad media de 63,6 años (IC 95%: 61,4-65,7). Los costes directos anuales medios por pacientes del estudio fueron de 34.214€, siendo de 11.952,47€ en estadio I, 23.506,21€ en estadio II, 38.771,81€ en estadio III y 72.748,84€ en estadio IV. El coste anual directo total estimado de todos los pacientes en España con MF/SS resultó en 78.301.171€, donde el 81% de los costes fueron atribuibles a pacientes en estadio I, el 7% al estadio II, el 6% al estadio III y el 6% al estadio IV. Conclusiones: Este estudio ofrece una evaluación precisa del coste directo del LCCT en pacientes con MF/SS en España, mostrando costes que varían sustancialmente en función del estadio. Los costes soportados por el paciente y los costes indirectos deberán considerarse en futuras investigaciones. Abstract: Background and objective: The cost of treating cutaneous T-cell lymphoma (CTCL) in Spain is unknown. With the advent of new treatments, it is more important than ever to gain an accurate picture of the true costs involved. The MICADOS study had 2 primary objectives: 1) to evaluate the impact of CTCL on patient quality of life, and 2) to evaluate the costs associated with the disease. This article reports the results of the cost analysis. Methods: We estimated the cost of treating CTCL over a period of 1 year from the perspective of the Spanish National Health System. Twenty-three dermatologists and hematologists from 15 public hospitals analyzed data for adult patients with mycosis fungoides (MF) or Sézary syndrome (SS). Results: A total of 141 patients (57.4% male) with a mean age of 63.6 years (95% CI: 61.4-65.7 years) were included. The mean direct annual cost of treating CTCL was €34,214 per patient. The corresponding costs by stage were €11,952.47 for stage I disease, €23,506.21 for stage II disease, €38,771.81 for stage III disease, and €72,748.84 for stage IV disease. The total direct annual cost of treating MF/SS in public hospitals in Spain was estimated at €78,301,171; stage I disease accounted for 81% of all costs, stage II for 7%, and stages III and IV for 6% each. Conclusions: The MICADOS study offers an accurate picture of the direct cost of treating CTCL in patients with MF/SS in Spain and shows that costs vary significantly according to disease stage. Patient-borne and indirect costs should be analyzed in future studies.

Patient focus groups can be invaluable for facilitating user-centered design of medical devices and new technologies, effectively capturing the richness and depth of patient experiences to help thoroughly assess feasibility, tolerance, and usability. While the metaverse holds promise for healthcare applications, its use in patient focus groups remains unexplored. In this Perspective we discuss the potential of the metaverse for conducting focus groups with patients. The theme of the focus group was the design and development of a therapeutic virtual reality application for patients with chronic low back pain. We carried out a pilot study comparing a focus group in a shared virtual space versus a physical location. This experience was positively received by patients, researchers, and clinicians, suggesting the metaverse is a viable medium for conducting these meetings and has potential advantages for remotely located participants, opening the doors for future expansion beyond focus groups to encompass all kinds of patient support and information groups. This approach fosters patient-centered healthcare by helping to facilitate patient voices directly into the design process, which may help lead to improved healthcare delivery, patient satisfaction, and treatment outcomes.

Abstract Background Few studies have explored the impact of cutaneous T‐cell lymphoma (CTCL) on health‐related quality of life (HRQoL) and compared it to other patients with cancer. Objectives The primary objective of the study was to assess the QoL of patients diagnosed with the mycosis fungoides (MF) and Sézary syndrome (SS) types of CTCL in Spain. Methods A cross‐sectional observational study was completed recruiting adult patients with MF and SS, exploring the European Organisation for Research and Treatment of Cancer‐Core Quality of Life Questionnaire, version 3 (EORTC‐QLQ‐C30v3) and Skindex‐29 HRQoL and itching intensity. Results A total of 141 patients [81 males (57.4%) and mean age of 63.6 years (95% CI: 61.4–65.7)], were included. EORTC‐QLQ‐C30 global health status showed worse scores in CTCL patients compared to healthy population (p

Resumen: Introducción: Las reclamaciones constituyen una de las principales fuentes de información para evaluar la calidad percibida en los centros asistenciales, siendo la cirugía ortopédica y traumatología (COT) una de las especialidades con mayor probabilidad de recibirlas por su elevada demanda quirúrgica que genera importantes listas de espera. Objetivos: Mostrar la evolución de las reclamaciones presentadas en un servicio de COT, clasificar los motivos expuestos e identificar las oportunidades de mejora derivadas de las mismas. Metodología: Estudio epidemiológico descriptivo, observacional y de orientación temporal retrospectiva. Revisión de los registros correspondientes a las reclamaciones presentadas durante el periodo 2014-2018 en el servicio de COT de un hospital universitario. Para la clasificación de las reclamaciones se han utilizado los motivos establecidos por la aseguradora pública CatSalut. El análisis estadístico se ha realizado mediante el programa Excel® y el software R-Project (versión 4.0.2), considerándose un nivel de significación estadística de p

Background/Objectives: Histamine intolerance is primarily caused by a deficiency in the diamine oxidase (DAO) enzyme at the intestinal level. The reduced histamine degradation in the gut leads to its accumulation in plasma, thereby causing multiple clinical manifestations, such as urticaria, diarrhea, headache, dyspnea, or tachycardia, among others. The dietary management of this food intolerance consists of the follow-up of a low-histamine diet, often combined with DAO supplementation. To date, around twenty studies have investigated the effectiveness of these dietary strategies in reducing the frequency and/or intensity of symptoms, with promising results. However, the limitations of these studies (small patient cohort, lack of control group, and short dietary intervention periods) highlight the need for more ambitiously designed research. Therefore, the main objective of this prospective, unicentric, double-blind, randomized, and placebo-controlled trial is to evaluate the efficacy of a low-histamine diet and/or DAO supplementation over a three-month period in improving symptoms of histamine intolerance. Additionally, the impacts of these dietary strategies on the intestinal microbiota composition, urinary profile of histamine metabolites, serum DAO activity, and plasma histamine levels will be assessed throughout the intervention. Methods: The trial will enroll 400 patients who will be randomly assigned to one of two groups: the intervention group, which will follow a low-histamine diet, or the control group, which will maintain their habitual dietary habits. Within each of these groups, participants will be further divided into four subgroups to receive either exogenous DAO enzyme supplementation (from porcine or plant sources, with the latter administered at two different dosages) or a placebo. Therefore, a total of eight distinct intervention groups will be considered. The comparison of these groups will allow the evaluation of the individual effects of the low-histamine diet or DAO enzyme supplementation, as well as their possible synergistic effect. Results: The results of this study should help to improve dietary recommendations for histamine-intolerant patients and ultimately enhance their quality of life. [ABSTRACT FROM AUTHOR]

Introduction Immunotherapies, such as immune checkpoint inhibitors and chimeric antigen receptor T-cell therapy, have significantly improved the clinical outcomes of various malignancies. However, they also cause immune-related adverse events (irAEs) that can be challenging to predict, prevent and treat. Although they likely interact with health-related quality of life (HRQoL), most existing evidence on this topic has come from clinical trials with eligibility criteria that may not accurately reflect real-world settings. The QUALITOP project will study HRQoL in relation to irAEs and its determinants in a real-world study of patients treated with immunotherapy.Methods and analysis This international, observational, multicentre study takes place in France, the Netherlands, Portugal and Spain. We aim to include about 1800 adult patients with cancer treated with immunotherapy in a specifically recruited prospective cohort, and to additionally obtain data from historical real-world databases (ie, databiobanks) and medical administrative registries (ie, national cancer registries) in which relevant data regarding other adult patients with cancer treated with immunotherapy has already been stored. In the prospective cohort, clinical health status, HRQoL and psychosocial well-being will be monitored until 18 months after treatment initiation through questionnaires (at baseline and 3, 6, 12 and 18 months thereafter), and by data extraction from electronic patient files. Using advanced statistical methods, including causal inference methods, artificial intelligence algorithms and simulation modelling, we will use data from the QUALITOP cohort to improve the understanding of the complex relationships among treatment regimens, patient characteristics, irAEs and HRQoL.Ethics and dissemination All aspects of the QUALITOP project will be conducted in accordance with the Declaration of Helsinki and with ethical approval from a suitable local ethics committee, and all patients will provide signed informed consent. In addition to standard dissemination efforts in the scientific literature, the data and outcomes will contribute to a smart digital platform and medical data lake. These will (1) help increase knowledge about the impact of immunotherapy, (2) facilitate improved interactions between patients, clinicians and the general population and (3) contribute to personalised medicine.Trial registration number NCT05626764.

Secularized societies allow for all kinds of expressions of human spirituality (or lack of it). However, both the established religions and the more fluid forms of spirituality seem to leave open a specific space for the religious experience as something that cannot be met in any other form of cultural expression. Rosa’s theory of Resonance, we argue, has the potential to empty this specific space of religious experience, advancing secularization to the next level. To Rosa, a religious experience is no longer a unique form of human experience but a simple example, among others, of the variety of experiences of Resonance. Rosa, albeit inadvertently, reinforces Sloterdijk’s analysis, according to which the traditional concept of religion is a misunderstanding that can be overcome. These approaches to religion open the possibility of a third stage in the theories of secularization. In the first, the Enlightenment proclaimed that religion was to be washed away by the impulse of the immanent frame of Modernity. In the second, Taylor, Casanova, and others showed that religion never disappeared and that Modernity merely enabled religious pluralism. In the third stage of the theories of secularization, religion will be seen as a redundant cultural product.