May 2016

What’s it like to live with Crohn’s Disease?

Galen Research has published an article describing what it is like to live with Crohn’s Disease (CD). We conducted 30 qualitative interviews with Crohn’s patients to learn how their quality of life (QoL) is affected by this chronic, disabling disease.

While previous, small scale studies have investigated symptoms and functional impairments experienced by patients, this is the first to provide a holistic picture of the impact of CD and its treatment on a patient’s life. Generic patient-reported outcome measures are currently used in clinical studies and trials.

The needs-based model of QoL formed the basis of the study. Patient value is dependent on the extent to which their human needs are fulfilled. According to the interviewees, the needs affected by CD included those for; nutrition, hygiene, continence, safety, security, self-esteem, role fulfillment, attractiveness, intimacy, cognition, pleasure and autonomy. Treatment is effective where it frees patients to meet these needs. It is interesting to note that non-clinical interventions can also improve QoL – such as improved provision of public toilets or dietary advice.

With the move to outcome-based commissioning and reimbursement (OBR), more attention has to be paid to the value patients gain from interventions. A patient-centric outcome measure specific to CD (The Crohn’s Life Impact Questionnaire (CLIQ)) was developed based on these interviews. It provides a validated, unidimensional index of patient value ideal for OBR studies (

Anyone interested in using the CLIQ should contact Galen Research via the website or email or call +44 161 226 4446.