5th EpiCom Workshop: The impact of PROs on clinical practice in 2020 and beyond

Marieke Pierik, EpiCom Member

Marieke Pierik

The World Health Organisation defined health in 1948 as a status of complete physical, psychological and social well-being. Complete well-being is, however, difficult to obtain and even harder to maintain, bearing in mind that over 50% of adults suffer from a chronic disease, people are living longer than ever and continuous environmental influences are resulting in physical or mental symptoms. Therefore, health was recently redefined as a dynamic status of subjective physical, psychological and social well-being. Health care is the maintenance or improvement of health via the prevention, diagnosis and treatment of disease, injury or other physical or mental impairments in people. Patient-reported outcomes are outcomes directly reported by patients without prior interpretation by health care professionals. Compared with clinical outcomes (e.g. corticosteroid use, hospitalisation, surgery), they provide a more holistic interpretation of the effect of interventions or a condition on people by also taking into account the patient perspective and psychological and social aspects.

Patient-reported outcome measures (PROMs) measure health-related aspects, such as quality of life and disability, that matter most to patients and are tools to evaluate subjective well-being. PROMs were initially developed for use in pharmacological trials and health service research to enable evaluation of the patient value of interventions. More recently, routine use in clinical care has been advocated to improve the quality of care and facilitate the transformation to patient-centred care.

Inflammatory Bowel Disease (IBD) is a lifelong inflammatory disorder of the gut. Disease management based on treating symptoms and ‘step-up, trial and error’ drug introduction did not improve the long-term outcome sufficiently. Recent guidelines therefore advise stringent monitoring of mucosal inflammation. Interventions that address psychosocial and lifestyle factors that influence disease activity, such as non-adherence to treatment, smoking, nutritional status and psychological factors, can prevent disease relapse and decrease health care utilisation and work absenteeism. To improve the long-term outcome and the quality of care of IBD, tight control of mucosal inflammation in combination with monitoring of all disease-related aspects and the patient perspective via PROMS is therefore warranted. Tight control and systematic registration of PROMs, patient-reported experiences and lifestyle and psychosocial determinants of disease are at present not implemented in everyday care because it is not feasible to acquire all the necessary information at the right moment for every patient during a standard outpatient clinic visit. Increasing the number or the duration of visits would place further strain on the health care system.

During the ECCO Congress in 2020 in Vienna, EpiCom will chair a Workshop entitled “Impact of PROs on clinical practice in 2020 and beyond”. The learning objectives of this workshop are creating awareness of gaps in perception between patients and health care professionals and providing insights into the additive value of monitoring PROs in cohort studies, for drug development and in clinical practice. The main challenges for implementation of PROMs and engagement of patients and health care professionals in long-term monitoring of PROs will be discussed. During the second part of the Workshop, participants will be challenged with a PRO implementation task. Finally, examples of how PROM measurement can be implemented in everyday care using telemonitoring tools will be discussed. By increasing awareness of the value of PROMs, EpiCom aims to facilitate the transformation to patient-centred care and increase the patient value of IBD research projects.

Posted in ECCO News, Committee News, EpiCom, Volume 14, Issue 4