Perception gaps between patients with ulcerative colitis and healthcare professionals: an online survey

Abstract

Background: The purpose of this study was to examine the differing perspectives and perceptual gaps relating to ulcerative colitis (UC) symptoms and their management between patients and healthcare professionals (HCPs).

Methods: Structured, cross-sectional, Web-based questionnaires designed to assess a variety of disease indices were completed by adult patients with UC and HCPs involved in the care of patients with UC from Canada, France, Germany, Ireland, Spain, and the United Kingdom.

Results: Surveys were completed by 775 patients, 475 physicians, and 50 nurses. Patient self-reported classification of disease severity revealed generally greater severity (mild, 32%; moderate, 53%) compared with physician and nurse estimates of UC severity among their caseloads (mild, 52% and 49%; moderate, 34% and 37%, respectively). Patients reported that an average of 5.5 (standard deviation, 11.0) flares (self-defined) occurred over the past year, compared with 3.4 and 3.8 flares per year estimated by physicians and nurses. Perceived flare triggers differed between patients (stress ranked first) and HCPs (natural disease course ranked first). Fifty-five percent of patients stated that UC symptoms over the past year had affected their quality of life, while physicians and nurses estimated that 35% to 37% of patients would have a reduced quality of life over the same period. Patients ranked urgency and pain as the most bothersome symptoms, while physicians and nurses ranked urgency and stool frequency highest. About half of patients (47%) defined remission as experiencing no symptoms; by comparison, 62% to 63% of HCPs defined remission as requiring the complete absence of symptoms. HCPs (doctors/nurses in general practice and/or hospital) were regarded by patients as their main source of UC information by 72%; however, 59% reported not arranging regular visits to see their HCPs.

Conclusions: This large survey identified important differences between patients' and HCPs' perceptions of the impact of UC symptoms on patients' lives. Notably, HCPs may underestimate the effect of specific UC symptoms on patients and may fail to recognize issues that are important to patients.

Figure 1

UC severity ratings. Patients’ self-reported classification of disease severity: patients were asked how they would personally describe the severity of their UC overall, regardless of how their doctor described it. Physicians’ and nurses’ assessment of symptom severity among their caseloads: physicians and nurses were asked what percentage of their current UC patients had mild, moderate, or severe disease. Data may not add up to 100 % due to rounding. UC, ulcerative colitis.

Figure 2

Most bothersome factor for UC patients, as assessed by patients, physicians, and nurses. Patients were asked which one of the following bothered them the most about their UC: urgency, pain, number of stools per day, blood in your stools, number of tablets to be taken, or none of the above. Physicians and nurses were asked which one of the same choices they thought bothered their UC patients the most. Data may not add up to 100 % due to rounding. UC, ulcerative colitis.

Figure 3

Mean symptom ratings during a flare in mild-to-moderate UC, as assessed by patients, physicians, and nurses. Patients with mild-to-moderate disease were asked to rate each of the following to describe a typical flare of UC on a continuous rating scale: frequency of stools per day, frequency of blood in stools, and feeling of urgency to go to the bathroom. Physicians and nurses were asked to rate the same choices according to how they would define a typical flare experienced by a mild-to-moderate patient. Ratings were transformed to a 10-point scale; higher scores indicated greater symptom severity. UC, ulcerative colitis

Figure 4

Most likely cause of UC flares, as ranked by patients, physicians, and nurses. Patients, physicians, and nurses were asked, based on their own viewpoint, to place the following four causes of UC flare in rank order: stress, natural course of the condition, changes from regular diet, and not taking maintenance therapy when UC is in remission. Data may not add up to 100 % due to rounding. UC, ulcerative colitis

Figure 5

Disease control over the past 12 months, as assessed by patients, physicians, and nurses. Patients were asked which one of the following statements best described how effectively their UC had been controlled over the past 12 months: (1) my symptoms were completely or mostly under control; (2) my symptoms were present but did not interfere with my quality of life; (3) my symptoms caused some disruption to my quality of life; or (4) my symptoms affected my quality of life on a regular basis. Physicians and nurses were asked, in terms of how effectively their UC had been controlled over the last 12 months, approximately what percentage of your mild-to-moderate UC patients fell into each of the above categories. Data may not add up to 100 % due to rounding. UC, ulcerative colitis