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

Irving, Peter M; Burisch, Johan; Driscoll, Richard; Olsson, Mats Joakim Robert; Fullarton, John R.; Rodgers‐Gray, Barry; Travis, Simon

doi:10.5217/ir.2018.00041

Cited by 22 publications

(30 citation statements)

References 27 publications

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“…In a survey conducted by the IBD2020 global forum, 2 of the factors significantly associated with perceived excellent or very good quality of care were consultation length and the quality of specialist communication. 13 It has also been suggested that there is an unmet need for tools to aid discussion and align treatment goals. 6 In this global survey, the number one resource that physicians felt could most improve relationships with patients was an online tool or smartphone application to better monitor and track patient activities and symptoms.…”

Section: Discussionmentioning

confidence: 99%

“…The UC Narrative was composed of 2 related global surveys that separately examined the perspectives of patients and physicians across a range of countries. Although most IBD-related surveys encompass patients with UC and patients with Crohn disease, 13-15 these surveys were specific to UC. The UC Narrative survey questions explored aspects of living with UC, including day-to-day disease impact, disease management, goal-setting, and communication between patients and physicians.…”

Section: Introductionmentioning

confidence: 99%

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Ulcerative Colitis Narrative Global Survey Findings: Communication Gaps and Agreements Between Patients and Physicians

Rubin

Hart

Panaccione

et al. 2020

Inflammatory Bowel Diseases

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Background The Ulcerative Colitis (UC) Narrative global surveys examined patient and physician perspectives on living with UC and tried to identify gaps in optimal care. Questions explored patient-physician interactions, UC management goals, and resources for improving communication. Methods Questionnaires were conducted across 10 countries, covering aspects of UC including diagnosis, treatment, and impact on patient quality of life, in addition to standard demographic information. Descriptive statistics were calculated. Results Globally, 2100 patients and 1254 physicians were surveyed (from August 2017 to February 2018). Results showed 85% of patients were satisfied with the communication they had with their physician, including discussions relating to symptoms (86%) and medication options (81%). However, 72% of patients wished for more information and support at initial diagnosis, and 48% did not feel comfortable talking to their physician about emotional concerns. Most patients (71%) set UC management goals with their physician. Both patients (63%) and physicians (79%) wished for longer appointments. Although 84% of physicians believed patient advocacy organizations to be important in UC management, more than half (54%) never discussed them with patients. Conclusions These survey results highlight overall patient satisfaction with patient-physician communication but emphasize areas for improvement, such as patient desire to have more information earlier in their disease course. There is an unmet need for better information, materials, and support. Physicians need to consider which of the available tools and resources can help patients talk more openly, and accurately, because informed patients are more likely to engage with physicians in a shared decision-making process.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Ulcerative Colitis Narrative Global Survey Findings: Communication Gaps and Agreements Between Patients and Physicians

Rubin

Hart

Panaccione

et al. 2020

Inflammatory Bowel Diseases

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“…Outcome measures involve traditional health care outcomes like hospitalisation, surgery and corticosteroid exposure, but patient-reported outcome and experience are also important as they reflect patient perspective on the quality of care. Despite various efforts to standardise structures, processes and outcomes [1][2][3][4][5][6][7][8] , and due to high variability at local, national and international levels, there are still no clear definitions or outcome measures available to establish quality of care standards for IBD patients that are applicable in all contexts and all countries.…”

Section: Introductionmentioning

confidence: 99%

Quality of Care Standards in Inflammatory Bowel Diseases: a European Crohn’s and Colitis Organisation [ECCO] Position Paper

Fiorino

Lytras

Younge

et al. 2020

Journal of Crohn's and Colitis

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The management of inflammatory bowel disease (IBD) is complex, and requires tight control of disease activity, close monitoring to avoid treatment side effects, healthcare professionals with expertise in IBD and an interdisciplinary, holistic approach. Despite various efforts to standardise structures, processes and outcomes1-8, and due to the high variability at the local, national and international levels, there are still no clear definitions or outcome measures available to establish quality of care standards for IBD patients that are applicable in all contexts and all countries. For this reason, the European Crohn’s and Colitis Organisation (ECCO) supported the construction of a list of criteria summarising current standards of care in IBD. The list comprises 111 quality standard points grouped into three main domains (structure n=31, process n=42, outcomes n=38) and is based on scientific evidence, interdisciplinary expert consensus and patient-oriented perspectives. The list of proposed criteria is intended to represent the position of ECCO regarding the optimum quality of care that should be available to patients. Since healthcare systems and regulations vary considerably between countries, this list may require adaptation at local and national levels. It is recognised that not all these criteria that have been identified as optimal will be available in every unit. However, ECCO will continue its efforts to develop and coordinate projects and initiatives that will help to guarantee optimal quality of care for all IBD patients.

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“…The considerable psychosocial impact of IBD on education, careers, social and intimate well-being is well-documented in quality of life studies 15 16. Furthermore, patient surveys have drawn attention to concerns around delays in diagnosis, timeliness of review and treatment, access to appropriate inpatient facilities, coordination and continuity of care 17. The surveys also highlight needs relating to patients’ understanding about their condition, available treatment options and involvement in shared decision-making.…”

Section: Introductionmentioning

confidence: 99%

Consensus standards of healthcare for adults and children with inflammatory bowel disease in the UK

Kapasi

Glatter

Lamb

et al. 2019

Frontline Gastroenterol

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ObjectiveSymptoms and clinical course during inflammatory bowel disease (IBD) vary among individuals. Personalised care is therefore essential to effective management, delivered by a strong patient-centred multidisciplinary team, working within a well-designed service. This study aimed to fully rewrite the UK Standards for the healthcare of adults and children with IBD, and to develop an IBD Service Benchmarking Tool to support current and future personalised care models.DesignLed by IBD UK, a national multidisciplinary alliance of patients and nominated representatives from all major stakeholders in IBD care, Standards requirements were defined by survey data collated from 689 patients and 151 healthcare professionals. Standards were drafted and refined over three rounds of modified electronic-Delphi.ResultsConsensus was achieved for 59 Standards covering seven clinical domains; (1) design and delivery of the multidisciplinary IBD service; (2) prediagnostic referral pathways, protocols and timeframes; (3) holistic care of the newly diagnosed patient; (4) flare management to support patient empowerment, self-management and access to specialists where required; (5) surgery including appropriate expertise, preoperative information, psychological support and postoperative care; (6) inpatient medical care delivery (7) and ongoing long-term care in the outpatient department and primary care setting including shared care. Using these patient-centred Standards and informed by the IBD Quality Improvement Project (IBDQIP), this paper presents a national benchmarking framework.ConclusionsThe Standards and Benchmarking Tool provide a framework for healthcare providers and patients to rate the quality of their service. This will recognise excellent care, and promote quality improvement, audit and service development in IBD.

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

Cited by 22 publications

References 27 publications

Ulcerative Colitis Narrative Global Survey Findings: Communication Gaps and Agreements Between Patients and Physicians

Ulcerative Colitis Narrative Global Survey Findings: Communication Gaps and Agreements Between Patients and Physicians

Quality of Care Standards in Inflammatory Bowel Diseases: a European Crohn’s and Colitis Organisation [ECCO] Position Paper

Consensus standards of healthcare for adults and children with inflammatory bowel disease in the UK

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