Impact of inflammatory bowel disease on Japanese patients’ quality of life: results of a patient questionnaire survey

Ueno, Fumiyoshi; Nakayama, Yasuo; Hagiwara, Eiji; Kurimoto, Sarina; Hibi, Toshifumi

doi:10.1007/s00535-016-1241-x

Cited by 47 publications

(55 citation statements)

References 16 publications

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“…In the IMPACT survey of 4,670 patients with IBD from 25 European countries, 64% of respondents believed that their gastroenterologist should have asked more probing questions to understand their disease [ 28 ]. A similar response (68.6%) to the same question was found when the IMPACT survey was repeated in 172 Japanese patients with IBD [ 27 ]. Similarly, in survey by the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA), 47.8% of 5,576 patients with IBD reported that their physician did not ask about the impact of symptoms on their quality of life [ 22 ].…”

Section: Discussionsupporting

confidence: 57%

“…Inadequate sharing of information between healthcare professionals was reported by nearly a quarter of the patients (22.4%; P <0.001). Dissatisfaction with patient-provider communication has been reported in other patient surveys [ 6 , 22 , 27 , 28 ]. In the IMPACT survey of 4,670 patients with IBD from 25 European countries, 64% of respondents believed that their gastroenterologist should have asked more probing questions to understand their disease [ 28 ].…”

Section: Discussionmentioning

confidence: 86%

“…Speed of advice in event of a flare was identified as a key driver of good quality of care ( P =0.006). Inadequate access to their IBD professional has been identified as an area for improvement in other European surveys [ 28 , 29 ], but not in the Japanese IMPACT survey, where 79.1% felt access was adequate [ 27 ]. It may be unrealistic to expect face-to-face consultations in busy clinics to be extended, but improved access through telephone or email could help.…”

Section: Discussionmentioning

confidence: 99%

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IBD2020 global forum: results of an international patient survey on quality of care

et al. 2018

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Background/AimsIBD2020 is a global forum for standards of care in inflammatory bowel disease (IBD). The aim of the IBD2020 survey was to identify and describe variations in quality care of IBD.MethodsPatients with IBD from Finland, Italy, France, Canada, Germany, UK, Spain and Sweden were surveyed during 2013 to 2014, covering: disease characteristics; impact on life and work; organization and perceived quality of care.ResultsSeven thousand five hundred and seven patients participated (median age, 39 years [range, 10–103 years]; 2,354 male [31.4%]), including 4,097 (54.6%) with Crohn’s disease (CD) and 3,410 (45.4%) with ulcerative colitis (UC). Median time from symptom onset to diagnosis was 1 year for both CD (range, 0–47 years) and UC (range, 0–46 years), with no clear evidence of improvement in diagnostic delay over the preceding 24 years. Half of the patients (3,429; 50.0%) rated their care as “excellent” or “very good,” with similar results for CD and UC across countries. Five factors were significantly (P<0.01) associated with perceived good quality of care: quality of specialist communication; review consultation being long enough; failure to share information; no access to a dietician; speed of advice.ConclusionsThe IBD2020 survey has highlighted areas related to quality of care of IBD from the patients’ perspective, with scope for improvement.

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Section: Discussionsupporting

confidence: 57%

Section: Discussionmentioning

confidence: 86%

Section: Discussionmentioning

confidence: 99%

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IBD2020 global forum: results of an international patient survey on quality of care

et al. 2018

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“…15,16 The incidence and prevalence of UC in Asian countries have been rapidly increasing; [17][18][19] despite this, psychosocial assessments are overlooked in practice, and only a few studies have addressed these issues. 7,20,21 In this background, we aimed to comprehensively quantify the burden of psychosocial distress and to identify significant predictors affecting HRQL among newly-diagnosed patients with UC. All patients were affiliated with the MOSAIK (moderate-to-severe ulcerative colitis in Korea) cohort study.…”

Section: Introductionmentioning

confidence: 99%

Unmet Psychosocial Needs of Patients with Newly Diagnosed Ulcerative Colitis: Results from the Nationwide Prospective Cohort Study in Korea

et al. 2020

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Background/Aims: Limited data are available regarding psychosocial distress at the time of diagnosis of ulcerative colitis (UC). We investigated the psychosocial burden and factors related to poor health-related quality of life (HRQL) among patients newly diagnosed with moderate-to-severe UC who were affiliated with the nationwide prospective cohort study. Methods: Within the first 4 weeks of UC diagnosis, all patients were assessed using the Hospital Anxiety and Depression Scale (HADS), Work Productivity and Activity Impairment questionnaire, Inflammatory Bowel Disease Questionnaire (IBDQ), and 12-Item Short Form (SF-12) health survey. A multiple linear regression model was used to identify factors associated with HRQL. Results: Between August 2014 and February 2017, 355 patients completed questionnaires. Significant mood disorders requiring psychological interventions, defined by a HADS score ≥11, were identified in 16.7% (anxiety) and 20.6% (depression) of patients. Patients with severe disease were more likely to have presenteeism, loss of work productivity, and activity loss than those with moderate disease (all p<0.05). Significant mood disorders had the strongest negative relationship with total IBDQ score, which indicates disease-specific HRQL (β coefficient:-22.1 for depression and-40.0 for anxiety, p<0.001). The scores of all SF-12 dimensions, which indicate general HRQL, were remarkably decreased in the study population compared indirectly with previously reported scores in the general population. The Mayo score, C-reactive protein level, and white blood cell count showed significant negative associations with the IBDQ score (p<0.05). Conclusions: Psychosocial screening and timely interventions should be incorporated into the initial care of patients newly diagnosed with UC.

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“…troublesome symptoms, such as abdominal pain, diarrhea, hematochezia, fever, perianal lesions, weight loss, and fatigue, which can impact markedly on patient quality of life (QoL) [1][2][3][4][5]. In addition to enteric complications (eg, stricture, abscess, fistula, hemorrhage), CD may also result in extraintestinal inflammatory complications in the joints, skin, eyes, mouth, and other organ systems [1][2][3].…”

mentioning

confidence: 99%

Imaging and treatment patterns in newly-diagnosed patients with Crohn’s disease: analysis of a Japanese claims database

Hirai

Uda

Ota

et al. 2019

Preprint

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Background: The biologics adalimumab, infliximab, and ustekinumab are approved to treat Crohn’s disease (CD) in Japan; they are recommended to induce/maintain remission in steroid-dependent/steroid-refractory CD. However, little is known about biologic use in real-world clinical practice, particularly in the initial treatment stage following endoscopic/radiographic diagnosis (intestinal inspection). Methods: This observational, retrospective, longitudinal cohort study assessed patients in the Japan Medical Data Center claims database who were diagnosed with CD from 2009–2019, and prescribed ≥ 1 biologic (adalimumab, infliximab, ustekinumab). Primary outcomes were type of first-line treatment prescribed on/within 6 months of first CD diagnosis, and time from first diagnosis to biologic introduction. Results: The study included 1346 patients with newly-diagnosed CD who were prescribed a biologic (adalimumab, n = 434; infliximab, n = 892; ustekinumab, n = 20). Most common first-line treatments were 5-aminosalicylic acid (5-ASA) monotherapy (26.8%), 5-ASA plus biologic (26.3%), and biologic monotherapy (12.9%). First-line steroids (monotherapy/in combination) were prescribed in 10.8% of patients. The first-line biologic prescription rate was lower in patients who had undergone intestinal inspection within 12 months before biologic introduction versus those who had not (5.3% vs 17.4% in monotherapy; 19.9% vs 65.4% in combination with other agents). Mean time from diagnosis to first biologic prescription was 4.1 months. Conclusions: The study demonstrated high use of biologics (particularly infliximab) and low use of steroids in initial treatment of Japanese patients with newly-diagnosed CD who received biologics during their treatment course. Biologic prescription was more common in patients who had not undergone prior intestinal inspection.

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Impact of inflammatory bowel disease on Japanese patients’ quality of life: results of a patient questionnaire survey

Cited by 47 publications

References 16 publications

IBD2020 global forum: results of an international patient survey on quality of care

IBD2020 global forum: results of an international patient survey on quality of care

Unmet Psychosocial Needs of Patients with Newly Diagnosed Ulcerative Colitis: Results from the Nationwide Prospective Cohort Study in Korea

Imaging and treatment patterns in newly-diagnosed patients with Crohn’s disease: analysis of a Japanese claims database

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