Impact of ulcerative colitis on patients’ lives: results of the Finnish extension of a global ulcerative colitis narrative survey

Abstract

Introduction: The Ulcerative Colitis (UC) Narrative is a global initiative to engage patients with UC, in order to help identify the impact of UC on patients’ lives. The aim of the UC Narrative extension survey in Finland was to identify and describe the unmet needs in quality care.

Methods: Seventeen Finnish physicians were surveyed in the original UC Narrative survey between 7 December 2017 and 24 January 2018. In the extension phase, Finnish UC patients, recruited through the Finnish patient association, were surveyed from 15 November to 3 December 2018, covering questions on disease characteristics, impact on life, most common challenges in communication with health care professionals (HCPs) and access to care.

Results: Five hundred and eight patients with self-reported UC diagnosis participated (137 male [27.0%]). Diagnostic delay was, on average, 2.3 (SD 5.5) years; 14.4% had waited five years or more for diagnosis. Most patients (396; 78.0%) considered themselves to be in remission and rated their overall state of health as ‘excellent’ or ‘good’ (303; 59.7%). Most patients (79.6%) were satisfied with the communication with their HCPs, and the majority (74.2%) felt comfortable raising concerns and fears with HCPs. However, the satisfaction in discussing mental and emotional health impacts of UC was lower (44.3%). A relatively large number of patients (38.5%) felt that they would be a more successful person without UC.

Conclusions: The UC Narrative survey highlighted the diagnostic delay in UC, challenges in communication with HCPs and the impact of UC on life from the patients' perspective.

Keywords:

• Ulcerative colitis
• inflammatory bowel disease
• quality of care
• diagnosis delay
• narrative

Acknowledgments

The study sponsor played no role in the data analyses and interpretation, conclusions or decision to write and submit this manuscript. The Harris Poll, who performed the online survey had no role in data interpretation, conclusions or in the decision to write and submit this manuscript. The authors would like to thank all the patients and patient organization (Crohn ja Colitis ry) who were involved in UC Narrative Extension surveys. Medical writing support under the guidance of the authors was provided by Sanna Lönnfors. Only she has received an honorarium from Pfizer.

Disclosure statement

No potential conflict of interest was reported by the authors.

Author contributions

Statement of authorship: study design (UC Narrative Advisory Board, The Harris Poll), statistical analysis (The Harris Poll), initial manuscript drafting (SL, PM), critical revision and final approval (all authors).

Additional information

Funding

The study was sponsored by Pfizer Inc. PM reports speaker fees and travel support from Abbvie, Ferring, MSD, Janssen-Cilag, and Tillotts Pharma and consulting fees from Abbvie, AOP Orphan Pharmaceuticals, Janssen-Cilag, MSD, Pfizer, Tillotts Pharma, and Takeda. KY reports consulting fees and travel support from Finnish Crohn and Colitis association, Pfizer, Sandoz, Takeda, Tillots Pharma, and Goodlifememe AB (DBA Sidekickhealth).