Major societal and individual impact of chronic inflammatory skin diseases
Chronic inflammatory skin diseases have a major impact on our society. Over 2.5 million Dutch citizens suffer from chronic inflammatory diseases of the skin. Many patients suffer from persistent itch, sleeplessness, low self-esteem, and ultimately a critical impact on their participation in society. The long-term impact of dermatological disorders is debilitating: it spans from a lifelong negative impact on quality of life, decreased productivity at work, and psychiatric co-morbidities, to high risk of cardiovascular and metabolic complications. The psychological impact is substantial, including increased risk for psychological disorders such as depression and anxiety, and a high prevalence of experienced stigmatization.
Revolution towards individualized dermatological care
The ultimate goal of NGID is to define the most effective and the most rational care for each individual patient with a chronic inflammatory skin disease, providing adequate long-term disease control and prevention of disease progression and later-in-life comorbidities. We aim to provide “the right care for the right patient, at the right time”. This will lead to an improved QoL for millions of patients in The Netherlands, and a suspected reduction in annual national healthcare costs. Importantly, reducing the healthcare burden should not only be expressed as a monetary value, but also as a better use of clinical resources and drugs.
NGID in a nutshell
NGID involves the entire wide range of disciplines required to revolutionize dermatological care. The connectivity of NGID and its perfect momentum in the current era of high-end data acquisition and availability in computing power, is illustrated by the unique blend of researchers that join forces in our consortium: technologists provide the methodology to characterize immuno-dermatological diseases far beyond the current state-of-the-art, biologists fuel their translational models with this information to precisely study disease mechanisms/pathways, leading to the development of novel drugs or tailor-made treatments by pharmacologists and clinicians to perform prospective clinical trials. These insights are then applied by dermatologists in daily clinical practice with the aid of the patient's perspective on their disease and proposed treatment. The important role of psychosocial factors on the effect of treatment and vice versa is safeguarded by psychologists. Internal and external inclusive communication, dissemination and implementation are guided by communication experts. In short, dermatologists base their treatment/care on insights from biologists and analyses developed by technologists, while taking into account the patient needs and psychosocial profile.
Revolutionizing dermatological healthcare, by defining the most effective and rational treatment for each patient and providing adequate long-term disease control will make enormous impact on patient's quality of life:
| PATIENT QOL ASPECTS | CURRENT SITUATION | IMPACT 2030 |
|---|---|---|
| PERSPECTIVE ON HEALTH | Focus on physiological disease and treatment | Focus on individual patient care and QoL leads for more rational and sustainable health care |
| APPROACH | Mono-dimensional | Holistic multi-dimensional patient-centred approach |
| TREATMENT | Generic treatment by guidelines | Personalised treatment |
| EFFECTIVENESS OF TREATMENT | ‘Trial-and-error' approach | Personalized approach |
| TIME TO EFFECTIVENESS | Months-to-years | Weeks-to-months |
| DURATION OF DISEASE CONTROL | Short, with frequent setbacks | Long term disease control |
| TREATMENT/TEST LOCATION | Hospital or outpatient clinic | > 50% less hospital visits using tele-health and remote monitoring, and by empowering general practitioners in dermatological care |
| PATIENT CONTROL OVER TREATMENT | Mainly one-way communication from clinicians | Shared decision-making |
| PATIENT SAMPLING AND TEST RESULTS | Limited number of objective tests and invasive sampling | Multiple non-invasive tests and disease endotype identification using individual signature biomarkers |
| PATIENT MENTAL HEALTH, DISEASE UNDERSTANDING AND EXPECTATIONS OF TREATMENT | Limited understanding of treatment outcomes and disease progression bare risk for low therapy adherence an | Effective and objective communication for maximum therapy adherence and patient satisfaction |
| DISEASE | One overarching disease term | Disease endotyping |