Treating the visible symptoms of a disease does not always mean understanding it. In inflammatory bowel disease (IBD), tests may show normality while the patient remains exhausted, sleepless, or fearful of the next flare-up. This distance between what the clinic says and what the person experiences explains why listening to the patient’s voice is so crucial.
“IBD is not just inflammation of the intestine. It is also how a patient sleeps, how he behaves at work, what impact it has on his mood or his relationships,” recalls Dr. Marta Calvo, digestive system specialist at the Puerta de Hierro Hospital and member of the Spanish Working Group on Crohn’s Disease and Ulcerative Colitis (GETECCU).
IBD mainly includes Crohn’s disease and ulcerative colitis. They are chronic pathologies that usually appear in young people and that break into daily life in an unpredictable way. But it’s not just diarrhea or abdominal pain: “Many patients live with disabling fatigue, interrupted nights and the constant fear that the epidemic will return,” continues Dr. Calvo. This fear weighs on specific decisions such as taking a job, continuing education, maintaining a relationship, or even traveling. And, very often, it is an invisible fear.
“Stable biomarkers do not always reflect an optimal life. Clinical and experiential aspects must be integrated for joint decision making”
This invisibility is one of the words that best describes the experience, underlines Álex Herrera, patient with ulcerative colitis and communications manager at ACCU Spain: “Stable biomarkers do not always reflect an optimal life. You can have inflammation under control and continue to live with tiredness, anxiety or limitations in social and working life. It is necessary to integrate clinical and experience for joint decision-making.”
Put numbers to the experience
To capture this experience, there are PROMs (Patient Reported Outcome Measures) and PREMs (Patient Reported Experience Measures). In a standardized questionnaire format, the former collect how the patient perceives their illness: symptoms, quality of sleep, tiredness, emotional or work impact. The latter measure how the experience with the healthcare system was: clarity of information, coordination between professionals, humane care received.
In summary, as Calvo points out, “PROMs tell us how the patient experiences their illness and PREMs, how they feel with the system that takes care of them. If we don’t use them, we run the risk of seeing only numbers and endoscopies; if we integrate them, we have the opportunity to see the person in their entirety”.
Factors to monitor during the three key stages of IBD
Diagnosis
- Via PROM → Initial symptoms (pain, diarrhea, fatigue)
- Via PRESS → Speed in sending, understanding of the diagnosis
Treatment and follow-up
- Via PROM → Control of symptoms, side effects, quality of life
- Via PRESS → Access to specialists, coordination of the medical team
daily life
- Via PROM → Impact on work, studies, social relationships
- Via PRESS → Support, empathy, and educational resources for self-care
Sources: “Patient-Reported Outcomes and Patient-Reported Experience in Inflammatory Bowel Disease: A Spanish Overview,” Marín-Jiménez, I., Nos, P., Domènech, E., et al. (2020) / “ECCO Guidelines on Health Economics and Quality of Healthcare in IBD”, by the European Crohn’s Disease and Colitis Organization (ECCO); ACCU Spain (Crohn’s Disease and Ulcerative Colitis Association) / “Patient-reported outcome measures (PROMs) in the EU: towards patient-centred healthcare”, European Patient Forum (EPF) (2018).
In practice, these tools help spot problems before they get worse, facilitate shared decision-making and allow you to personalize treatment and, as Herrera adds: “They also give patients the feeling that their voice is important in the treatment of their disease.”
Between inflammation and everyday life
It is true that controlling inflammation is still a crucial goal in the management of IBD. The so-called mucosal healing – the achievement of normality in the intestinal mucosa – is associated with better clinical evolution: fewer outbreaks, fewer hospitalizations, less need for surgical interventions. However, as Calvo points out, “it is not enough. If the patient remains exhausted, with insomnia or constant fear, we cannot speak of success.”
“If the disease improves but not the quality of life, something is wrong. PROMs help identify these nuances or the need for possible therapeutic adjustments and strengthen treatment adherence”
Studies have shown, for example, that approximately 60% of patients with active IBD suffer from insomnia; 40% live with persistent tiredness; More than half believe that the disease has limited their professional career and 71% fear the next epidemic. “Hence the importance of translating clinical success into a tangible improvement in the person’s quality of life. And to demonstrate this it is necessary to measure the patient’s experience”, underlines the specialist.
The pharmaceutical perspective
From the hospital pharmacy, the inclusion of these questionnaires is understood as an opportunity to get closer to the patient. Piedad López, secretary of the Working Group on Immune-Mediated Inflammatory Diseases (GTEII) of the Spanish Society of Hospital Pharmacy and responsible for outpatients at the General Hospital of Tomelloso (Ciudad Real), explains it: “When you explain that they have the possibility of providing how they feel, how it affects them at work or in daily life, they respond objectively. And this provides us with comparable and useful information for clinical practice.”
López recalls that sometimes the clinical results seem favorable, “but the patient suffers from adverse effects, diarrhea or recurrent infections that do not appear in digestive tests. If the disease improves, but not the quality of life, something is wrong. PROMs help to identify these nuances or the need for possible therapeutic adjustments and to strengthen adherence to treatment,” he adds.
In the case of PREMs, they add value by detecting coordination problems between teams or communication with the patient. “They help us improve in daily practice, because it is not a light opinion, but rather validated questionnaires that systematically measure experience,” says López.
Why PROM and PREM are important in inflammatory bowel disease
THE AVG They are indicators that the patient himself records about his health. Some examples:
- abdominal pain
- Tiredness/fatigue
- Urgency to go to the bathroom
- Sleep disorders
- Impact on social and working life
- Associated anxiety or depression
THE PRES They are indicators that measure the perception that the patient has of their experience with the healthcare system. Some examples:
- Waiting time for consultations or tests
- Accessibility to specialists
- Quality of communication with the doctor
- Coordination between teams
- Empathy and treatment received
- Information received about the disease
Sources: “Patient-Reported Outcomes and Patient-Reported Experience in Inflammatory Bowel Disease: A Spanish Overview,” Marín-Jiménez, I., Nos, P., Domènech, E., et al. (2020) / “ECCO Guidelines on Health Economics and Quality of Healthcare in IBD”, by the European Crohn’s Disease and Colitis Organization (ECCO); ACCU Spain (Crohn’s Disease and Ulcerative Colitis Association) / “Patient-reported outcome measures (PROMs) in the EU: towards patient-centred healthcare”, European Patient Forum (EPF) (2018).
RETAR, a change of model
The commitment to integrating these tools is reflected in projects such as RETAR (Redefinition and Transformation of Care for people with IBD), promoted by the International University of Catalonia in collaboration with the biopharmaceutical company AbbVie and with the support of scientific societies, healthcare professionals and patient associations.
It does not limit itself to diagnosing problems, but proposes practical actions: early diagnosis starting from Primary Care, bringing medicines closer to home through telepharmacy, opting for personalized treatments, strengthening the figure of the specialized nurse and, above all, integrating the patient’s voice through PROM and PREM.
“PROMs and PREMs give us back something that we should never lose: the patient’s voice. Behind every colonoscopy there is a person with fears, plans and dreams”
“The message is simple,” summarizes Dr. Calvo: “Improving IBD treatment is not a luxury, it is an urgent need. Patients themselves say it clearly: we need you to measure not only what happens in the mucosa, but also what we feel and experience on a daily basis.”
The patient’s voice
This more humane and fair model is also what patient associations are asking for. “Fortunately we are moving towards closer and more person-centred care. We are patients, but above all we are people,” says Álex Herrera from the ACCU. Herrera underlines the importance of professional and social support: “It is not just the healthcare team that accompanies us, but also a support network made up of family, friends and patient organisations, who reach us and act as a bridge.”
Ultimately, concludes Dr. Calvo, “PROMs and PREMs give us something that we should never lose: the patient’s voice. They remind us that behind every colonoscopy there is a person with fears, plans and dreams. Listening to the patient is not an addition, it is the essence of medicine and the basis on which the entire system is supported”.
