Patients' perceptions, attitudes, and experiences about the management of mild-to-moderate ulcerative colitis

Casellas, Francesc; Vicens, Daniel Ginard; Menéndez, S. Riestra; Oliver, Noelia Alfaro

doi:10.1016/j.crohns.2014.02.013

Cited by 21 publications

(13 citation statements)

References 24 publications

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“…Qualitative analysis of data from these CE interviews disclosed the substantial emotional and physical burden of UC, as well as the impact on participants' lives. The significant symptomatic and HRQoL impacts of living with UC affected children in ways that clearly show homogeneity with previous studies [5][6][7][8][9][10][11][12][13][14][15][16][17][18][19][20][21][22][23]. There was a high level of agreement between children and parents/caregivers regarding the presence or absence of symptoms.…”

Section: Discussionsupporting

confidence: 64%

“…Previous qualitative research has primarily focused on adults, with most studies utilizing patients with mixed inflammatory bowel disease (IBD) etiologies [5][6][7][8][9][10][11][12][13][14][15][16][17][18][19][20][21][22]. A failure in these studies to analyze data by specific Table 3 Frequency counts for agreement on presence/absence of a symptom/impact by the parent and child during dyad interviews condition, made it previously impossible to differentiate findings attributable to UC versus other IBD conditions.…”

Section: Discussionmentioning

confidence: 99%

“…Rather they include patients with Crohn's disease or other similar nonspecified inflammatory bowel disease conditions. Most articles focus on adult-only populations with mixed etiologies, but provide an initial perspective for the symptoms and HRQoL experiences of patients with UC [5][6][7][8][9][10][11][12][13][14][15][16][17][18][19][20][21][22].…”

Section: Introductionmentioning

confidence: 99%

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Qualitative research to explore the symptoms and impacts experienced by children with ulcerative colitis

Randall¹,

Guobyte

Delbecque³

et al. 2020

J Patient Rep Outcomes

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Background Ulcerative Colitis (UC) is a chronic gastrointestinal disease that often presents during one’s most productive years and is characterized by colon inflammation. Key symptoms and impacts in adults are well-known, however, experiences among pediatric populations have not been well documented. The purpose of this study was to understand the health-related quality of life and symptomatic experience of children (2–11 years) living with UC. Methods Qualitative, semi-structured face-to-face interviews were conducted. Children aged 5–11 years were interviewed, as well as their parents/caregivers in matched dyads. Parents/caregivers of children aged2–4 years were interviewed within a parent/caregiver-only cohort. All participants were recruited from the United States. Interviews were coded using thematic analysis. Results Key symptoms and impacts reflecting the lived experience of UC were identified following thematic analysis, generating a conceptual model. A total of 32 participants (20 parents/caregivers and 12 children) were interviewed. Results identified a substantial burden of UC in children. All children and parents/caregivers reported that they/their child experienced stomach/abdominal pain. Other symptoms discussed by over 75% were blood in stool, diarrhea/loose stools, stool urgency, incomplete evacuation, stool frequency, and feeling gassy/passing gas. The most frequently discussed impacts by over 75% of participants were on emotional and practical aspects, seriously affecting quality of life. Conclusions Qualitative analysis of the interviews identified a substantial burden of UC on children, with a profound impact on their lives. The symptomatic experience is reflective of adults and adolescents. A high level of agreement between parents/caregivers and children was demonstrated regarding the perception of the presence or absence of symptoms. Children aged 8–11 years showed higher levels of agreement with parents/caregivers than did younger children, indicating appropriateness of self-report of symptom data in the 8–11 years age group.

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Section: Discussionsupporting

confidence: 64%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Qualitative research to explore the symptoms and impacts experienced by children with ulcerative colitis

Randall¹,

Guobyte

Delbecque³

et al. 2020

J Patient Rep Outcomes

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“…A similar change in priority was identified in group discussions with Spanish patients with UC. 15 Of note, physicians are typically more concerned about side effects in older patients. In contrast, younger patients placed more emphasis on avoiding side effects than older patients in this study.…”

Section: Discussionmentioning

confidence: 99%

Self-assessment of treatment targets in patients with inflammatory bowel disease using a survey

Reuken

Grunert

Lügering

et al. 2020

Therap Adv Gastroenterol

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Background: Physicians can improve their relationships with patients by understanding and meeting patients’ treatment targets, leading to higher adherence to therapy and improved disease prognosis. In the current study, we performed a questionnaire-based survey to further understand treatment targets in patients with inflammatory bowel disease (IBD). Methods: We created a questionnaire based on a point-allocation scale with 10 treatment target items. A total of 234 patients with IBD [Crohn’s disease ( n = 129) and ulcerative colitis ( n = 105)] participated in three German IBD centers. Patients were asked to allocate a total of 10 points across the 10 items, with more points indicating more importance. Results: The most important treatment targets for patients regarding their therapy were quality of life (2.78 points), control of defecation (1.53 points), and avoidance of IBD-related surgery (1.69 points). Avoiding surgery for IBD was less important in patients who had already undergone a surgical procedure than in those who had not (1.26 points versus 1.89 points, p < 0.001). Typical treatment targets, including mucosal healing (0.52 points) and normal biochemical markers (0.39 points), were not scored high by patients. The least important item was the possibility of all-oral therapy (0.19 points in 33 patients, 0 points in 201 patients). Conclusion: Treatment targets for patients were primarily related to quality of life, such as therapy side effects. Knowing these targets may improve patient–physician relationships and communication, and consequently, adherence to therapy.

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“…Casellas et al[ 16 ] showed that satisfaction with information was scored the lowest of the 6 rated domains and that lack of information was a constant complaint of patients over time, especially for those with mild to moderate conditions who were not mainly followed by gastroenterologists. [ 28 ] Some patients’ views of quality improvements in gastrointestinal diseases were directed at increasing access to patient organizations and groups, having consistency and coordination between GPs and hospital management,[ 29 ] improving knowledge of GPs on IBD,[ 28 , 30 ] and being more involved in defining disease-related concerns and prioritization of outcomes. [ 29 ] We also observed that communication within the healthcare network was not considered optimal.…”

Section: Discussionmentioning

confidence: 99%

Patient-reported healthcare expectations in inflammatory bowel diseases

et al. 2018

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BackgroundPatient-reported experience is an important component of a holistic approach to quality of care. Patients’ expectations of treatments and global disease management may indicate their illness representations and their satisfaction and hopes regarding quality of care.ObjectiveTo study expectations of patients with inflammatory bowel disease.MethodsTwo focus groups were conducted with 14 patients to explore their expectations about treatments and disease management. From qualitative content analyses of focus group discussions, we built a 22-item expectations questionnaire that was sent to 1756 patients of the Swiss IBD cohort. Answers were collected on a visual analog scale from 0 to 100, and medians (interquartile range [IQR]) calculated. Factor analysis identified main expectation dimensions, and multivariate analyses were performed to describe associations with patient characteristics.ResultsOf 1094 patients (62%) included in the study, 54% were female, 54% had Crohn’s disease, 35% had tertiary education, and 72% were employed. Expectation dimensions comprised realistic, predictive, and ideal expectations and were linked to information, communication, daily care, and disease recognition. Half (11 of 22) of the expectations were ranked as very high (median score > 70), the 2 most important being good coordination between general practitioners and specialists (median score: 89, IQR: 71–96) and information on treatment adverse events (89, IQR: 71–96). Women had overall higher levels of expectations than did men. Expectations were not associated with psychosocial measures, except those related to disease recognition, and most of them were highly associated with increased concerns on disease constraints and uncertainty.ConclusionsPatients have high expectations for information and communication among caregivers, the levels varying by gender and region. Patients also appear to request more active participation in their disease management.

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Patients' perceptions, attitudes, and experiences about the management of mild-to-moderate ulcerative colitis

Cited by 21 publications

References 24 publications

Qualitative research to explore the symptoms and impacts experienced by children with ulcerative colitis

Qualitative research to explore the symptoms and impacts experienced by children with ulcerative colitis

Self-assessment of treatment targets in patients with inflammatory bowel disease using a survey

Patient-reported healthcare expectations in inflammatory bowel diseases

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