This dermatological disease of autoimmune and chronic origin has an impact on patients who suffer from it both physically and psychologically and socially.
With the collaboration of Incyte
Vitiligo is a chronic autoimmune disorder that causes some areas of the skin to lose their natural color. When melanocytes, that is, the cells that produce pigmentation or color of the skin, are attacked and destroyed, a whitish appearance is acquired. José Luis López Estebaranz, head of the Dermatology Service at the Fundación Alcorcón University Hospital and Full Professor of Dermatology at the Rey Juan Carlos University, explains that “We increasingly know more about the mechanisms of vitiligo production, although its causes are complex, we know that genetic, autoimmune and environmental factors are involved. And its triggers can also include stress, certain skin traumas or exposure to certain chemicals.”.
Dr. José Luis Estebaranz, Head of the Dermatology Service. Alcorcón Foundation University Hospital.
Furthermore, vitiligo not only affects the external appearance of the skin, but there are certain diseases associated with it, such as thyroid disorders, diabetes or anemia and in many cases, patients may experience anxiety, depression or social withdrawal. Although it is not a fatal disease, it has a strong impact on patients’ quality of life. 40% admit that the pathology affects aspects of their daily life, 33% their emotional well-being and 50% reveal that it affects their behavior, especially when the spots are in visible areas.
These data make clear the need for improvement in its management and treatment. Luis Ponce de León, president of the Association of Vitiligo Patients (ASPAVIT)emphasizes that “This disease affects psychologically to such an extent that stress, depression and anxiety are not at the origin of vitiligo, but they do affect the outbreak and its evolution”. From his position, the president of the association calls for an urgent measure to raise awareness, train and inform dermatologists to be able to diagnose and treat the disease as soon as possible.
Dr. José Juan Pereyra, Head of Dermatology Section at the Virgen del Rocío University Hospital; Dr. José Polo, Family Physician at the El Casar health center and President of the Spanish Society of Primary Care Physicians (SEMERGEN); Dr. Sandra Ros, Associate Psychologist of the Dermatology and Rheumatology Service at the Hospital de la Santa Creu i Sant Pau; Dr. Joaquín Borrás, Head of the Pharmacy Service at Sagunto Hospital; Mr. Luis Ponce de León, President of the Association of Vitiligo Patients (ASPAVIT); Moderator: Dr. Raúl de Lucas, Head of Section of the Pediatric Dermatology Service at the La Paz University Hospital.
INVITSIBLES: advances in the management of vitiligo
With the aim of achieving what vitiligo patients demand, the report has been presented “INVITSIBLE, giving a voice to vitiligo. Visibility of the disease and advances in its management”carried out by IESE Business School, in collaboration with Incyte and the methodological support of Outcomes’10. In it, the situation at the healthcare and social level of this pathology in our country is analyzed, led by a multidisciplinary scientific committee made up of 11 health professionals and two patient representatives. The report has delved into the main gaps in relation to the pathology, such as the lack of specific training for primary care professionals, the disparity in access to treatments or insufficient psychological support for patients, despite the high emotional burden that this disease entails.
Ms. Marina Camón, Director of Health Programs at IESE Business School; Mr. Juan Díaz, General Director Incyte; Ms. Celia García, General Director of Humanization and Patient Care of the Madrid Health Service; Moderator: Mr. Jordi Cohen, Project Director of the Center for Research in Healthcare Innovation Management – IESE Business School.
Jordi Cohensenior associate at the Center for Research in Healthcare Innovation Management (CRHIM) at IESE Business School and one of the authors points out that “the INVITSIBLES project responds to many of these shortcomings, proposing concrete improvements in training, access to treatments and the development of care protocols that optimize coordination between specialties and approach treatment from a more personalized perspective”. In this way, care for patients with vitiligo is improved through a series of recommendations.
This report, in turn, reveals some of the tools available to identify the weaknesses of the health system when managing this pathology. Specifically, in the clinical setting the Vitiligo Area Scoring Index (VASI) and the Vitiligo Disease Activity Score (VIDA) make it possible to evaluate the progression of the disease and adjust treatments according to the activity. And in terms of quality of life and emotional impact, the escalas Dermatology Life Quality Index (DLQI) y Hospital Anxiety and Depression Scale (HADS) help measure patient well-being.
Likewise, another of the great milestones of INVITSIBLES has been the implementation of the PROMs (patient reported outcome measures), which are outcome measures reported by the patient, which help to achieve a more comprehensive view of your health statusallowing for more personalized tracking. “A care process has been developed that includes signs of suspicion and referral criteria, which facilitates better coordination between dermatology, psychology and other specialties, thus ensuring that patients receive appropriate care at each stage of the disease”says Cohen.
Digitization to continue moving forward
Mr. Luis Ponce de León, President of the Association of Vitiligo Patients (ASPAVIT).
“Teledermatology could be key to reducing waiting times and facilitating access to specialists, especially in rural areas or areas with fewer resources, but its implementation is still limited”adds Jordi Cohen. And, as the INVITSIBLES report reveals, Information and Communication Technologies are presented as an essential element when it comes to improving patient care. Likewise, in the report, they point to them as a tool to improve the training of health professionals, as well as to empower patients if they have access to reliable and accessible information about the disease. However, as Cohen points out, ICT continues to be underused and there needs to be greater integration into the health system to optimize its use.
Another need, according to Ponce de León, president of the patients association, is that “to create a national registry of patients with vitiligo, something that has not been considered important or serious until now, so we only have the existing studies and the data provided by the consultations we receive in the association”.
**How does the INVITSIBLES initiative plan to address the disparities in access to specialized vitiligo care, ensuring equitable treatment options for all patients, regardless of their location or socioeconomic status?**
This article discusses vitiligo, its impact on patients, and the INVITSIBLES initiative aiming to improve its management. Here’s a potential interview structure with open-ended questions:
**I. Understanding Vitiligo firsthand (Panel with Dr. Estebaranz and Mr. Ponce de León)**
* **Dr. Estebaranz:** You mentioned the complexity of vitiligo’s causation. Can you elaborate on the interplay of genetics, autoimmune responses, and environmental triggers? What are some of the latest research advancements in understanding these mechanisms?
* **Mr. Ponce de León:** The article highlights the emotional impact of vitiligo. Could you share some personal stories from ASPAVIT members that illustrate the psychological toll this condition can take? How does stigma and social perception exacerbate these challenges?
* **Open to both:** How does the lack of awareness about vitiligo contribute to delays in diagnosis and appropriate treatment? What are some misconceptions surrounding the condition that need to be addressed?
**II. Current Challenges in Vitiligo Management (Panel with Dr. Pereyra, Dr. Polo, Dr. Ros, and Dr. Borrás)**
* **Dr. Pereyra:** The INVITSIBLES report highlights the need for better training for primary care physicians. How can we bridge this gap and empower GPs to identify and manage vitiligo cases effectively?
* **Dr. Polo:** What are some barriers preventing wider access to specialized treatment options for vitiligo, such as dermatologists and psychologists? Are there regional disparities in care availability?
* **Dr. Ros:** Psychologically, how do vitiligo patients experience anxiety and depression? What specific interventions, beyond medication, can be offered to support their mental well-being and improve coping mechanisms?
* **Dr. Borrás:** The article discusses the role of PROMs in personalized care. How can we effectively integrate patient-reported outcomes into treatment plans and ensure that their voices are truly heard throughout the care journey?
**III. Innovations and Future Directions (Panel with Ms. Camón, Mr. Díaz, Ms. García, and Mr. Cohen)**
* **Ms. Camón:** The INVITSIBLES report calls for greater utilization of digital tools like teledermatology. What specific kind of technological advancements do you see as most promising for improving vitiligo care accessibility and patient engagement?
* **Mr. Díaz:** As a pharmaceutical company, how is Incyte involved in researching and developing new treatments for vitiligo? Are there any promising breakthroughs on the horizon that could significantly impact the lives of patients?
* **Ms. García:** How can healthcare policy and system structures be adapted to better address the unique challenges faced by vitiligo patients? What role can government agencies play in promoting awareness, funding research, and providing support?
* **Mr. Cohen:** What are the long-term goals of the INVITSIBLES initiative? How do you envision this project contributing to a more patient-centered, collaborative, and ultimately more effective approach to vitiligo management?
**General Discussion Points for the Panel:**
* The report suggests the creation of a national vitiligo registry. What are the potential benefits and challenges associated with such a registry?
* How can we best empower patients to become active participants in their own care and advocate for their needs within the healthcare system?
* Looking ahead, what are the most pressing research priorities for the vitiligo community?
**Closing Thoughts:**
* Ask each panelist to share a message of hope and encouragement for individuals living with vitiligo.
This structure aims to create a nuanced and impactful conversation about vitiligo, exploring not only medical aspects but also the social, emotional, and systemic factors that influence patient experiences.
