This survey provides insight into the differing experiences and perceptions of patients with UC and HCPs involved in the management of such patients across Western Europe and Canada. To our knowledge, this is the first international study in UC to compare the views and beliefs of patients, physicians, and specialist nurses.
A higher percentage of patients reported that UC symptoms adversely affected their quality of life compared with the percentage of patients perceived by HCPs to have quality of life disruptions. Furthermore, a majority of patients assessed their own symptoms to be moderate in severity, while HCPs estimated the majority of their patients as having UC of mild severity. These results suggest that physicians and nurses may underestimate patients’ symptom burden. Our data also demonstrated a gap among patients and HCPs with regard to what bothers patients most about their UC. Whereas patients most frequently ranked urgency, pain, and bloody stools as bothersome factors relating to their UC, HCPs perceived urgency and stool frequency as being most bothersome. This discordance suggests that physicians and nurses may need to be more aware of patients’ feelings in regards to level of pain and bloody stools; it should be noted that a relatively high prevalence of chronic pain as a patient comorbidity at baseline (15%) may have influenced the results.
Physicians’ and nurses’ estimates of the annual incidence of flares experienced by a patient with UC were lower than the patient-reported number of UC flares. A similar finding was reported from the UC: NORMAL survey
, suggesting either a potential underestimation of patients’ symptoms by HCPs, or a misinterpretation of symptoms by patients. In addition, patients in this study only discussed approximately three-quarters of their experienced flares (self-defined) with their HCP. This patient-physician gap suggests a need for more open lines of communication and improved patient education on symptom evaluation, so that patients will be better able to define when a flare is occurring.
Approximately half of patients defined remission as the complete absence of symptoms compared with 62% to 63% of nurses and physicians, respectively. This discrepancy is not unexpected given that there is no widely agreed upon definition of UC remission. At present, discussions are unfolding among HCPs about how best to define remission; definitions in clinical trials may be less stringent (ie, some UC symptoms are acceptable) compared with the expectations of clinicians in daily practice noted in this survey. The initiation of a discussion among patients, HCPs, and regulatory authorities on modifying endpoints for new UC medications being developed would be helpful.
Patients were more likely than HCPs to rank stress and diet as the most likely triggers of flares, whereas HCPs were more likely to rank the natural disease course and not taking maintenance therapy as the most likely causes. It may be the case that patients are unaware of the relapsing–remitting nature of the disease
, and the importance of maintenance therapy during quiescent periods to reduce the probability of a disease flare
[11–13]. If patients are not regularly taking maintenance therapy, flare recurrence is more likely
[11, 13, 14], and may subsequently be attributed to causes such as stress and diet; therefore, patient education on UC disease course and medication adherence is critical. It is also possible that patients may have misinterpreted symptoms as UC flare, instead of symptoms of irritable bowel syndrome (IBS). Both conditions share some common symptoms such as pain and alteration of bowel habits
, in part because of the role of gut microbiota in the pathogenesis of both UC and IBS. Therefore, a better understanding and distinction of UC versus IBS symptoms is important for proper management of UC.
Patients’ estimates of adherence with current oral 5-ASA therapy during their most recent period of remission were broadly similar to HCPs’ estimates. However, patient-estimated adherence rates over the past 7 days were lower. Similar to rates observed in previous observational data
[6, 7, 11, 12, 14, 16–20], these low adherence rates are troublesome, given that poor adherence with 5-ASA therapy is linked to an increased risk of flare and higher medical costs
[11–13, 21]. In turn, increased disease activity can also result in deterioration of patient quality of life
[2, 22–24]. Effective patient–physician communication and collaboration has been shown to improve adherence in other chronic diseases
[25, 26], and may improve adherence rates for patients with UC.
About 20% of patients reported being dissatisfied with 5-ASA treatment while physicians perceived that only 10% of patients were dissatisfied. However, only about one-third of dissatisfied patients reported having discussed their concerns with their doctor. Thus, more direct questioning from HCPs may help patients be more forthcoming. Furthermore, although the large majority of patients (72%) saw their doctor or specialist nurse in general practice and/or hospital as the principal source of information about their UC and its treatment, most (59%) did not arrange regular visits. This lack of regular contact between patients and their HCP may account, in part, for the discrepancies in perception of the impact of UC.
One unique aspect of this survey is that it compares the perception of nurses treating UC with physicians. Given that the sample of nurse specialists was limited to the United Kingdom, it may be of benefit to specifically compare how the responses of UK nurses compared to those of UK physicians. Results from physicians and patients by country are presented in a separate analysis
, although nurses were not included in that analysis. Briefly, for caseload severity, effect of UC on quality of life, and adherence to 5-ASA treatment, estimates of UK nurses and UK physicians were nearly identical (within 5 percentage points). The rank order of which UC symptoms were most bothersome to patients was the same for UK nurses and UK physicians (urgency, number of stools, blood in stools, and pain). However, UK nurse estimates of flares experienced per year were higher than UK physician estimates for each severity grade (mild, 1.6 vs 0.9; moderate 3.4 vs 2.4; severe, 6.4 vs 4.4). Although it remains unclear how generalizable the nurse data are across nations, the UK data suggest that responses from nurses are likely to be similar to those of physicians from the same country.
As with all observational studies, this study was subject to a number of limitations. The primary limitation was the fact that patients and HCPs were recruited independently and not matched; thus, it is possible that the patient respondents had a more severe disease profile compared with patients included in physicians’ and nurses’ caseloads. Additionally, patients and HCPs were not given standard definitions of disease severity or flares on which to base their responses. Nonetheless, the current findings are in line with that reported in the UC: NORMAL study
; the demographic profile of patient respondents was similar to that reported in previous surveys
[7, 9, 28–30] and within the general UC patient population
[28, 31–33], suggesting that these results may be applicable to the larger UC population.