Quality of health care in inflammatory bowel disease: development of a reliable questionnaire (QUOTE-IBD) and first results

Eijk, Ingrid van der; Sixma, H.; Smeets, Ton; Veloso, Fernando Tavarela; Odes, Selwyn; Montague, Sean; Fornaciari, Giovanni; Moum, Bjørn; Stockbrügger, Reinhold W.; Rüssel, Maurice G.

doi:10.1111/j.1572-0241.2001.05334.x

Cited by 21 publications

(3 citation statements)

References 28 publications

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“…Also surgery, younger age and longer disease duration play an important role in the experience of the quality of care (van der Eijk et al . , Pallis et al . , Masachs et al .…”

Section: Introductionmentioning

confidence: 99%

Health care as perceived by persons with inflammatory bowel disease – a focus group study

Lesnovska

Frisman

Hjortswang

et al. 2017

Journal of Clinical Nursing

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Aims and objectives The aim of this study was to explore the perceptions of health care among persons living with inflammatory bowel disease. Background The quality of care plays an important role in the life of persons with a chronic disease. To define what persons with inflammatory bowel disease perceive as high‐quality care, greater focus must be placed on the individual's own perspective of living with the condition. Design A qualitative exploratory study was conducted based on focus groups. Methods Five focus groups were conducted with adult persons living with inflammatory bowel disease, 14 men and 12 women aged 19–76 years. The interviews were performed between January–June 2014. Results The perceptions of health care from the perspective of persons living with inflammatory bowel disease were summarised in two categories: ‘professional attitudes of healthcare staff’ and ‘structure of the healthcare organisation’. Persons with inflammatory bowel disease want to be encountered with respect, experience trust and obtain information at the right time. They also expect shared decision‐making, communication and to encounter competent healthcare professionals. Furthermore, the expectations on and perceptions of the structure of the healthcare organisation comprise access to care, accommodation, continuity of care, as well as the pros and cons of specialised care. Conclusion The findings show the importance of establishing a respectful and trusting relationship, facilitating healthcare staff and persons with inflammatory bowel disease to work as a team in fulfilling individual care needs – but there is room for improvement in terms of quality of care. Relevance to clinical practice A person‐centred approach, which places the individual and her/his family at the centre, considering them experts on their own health and enabling them to collaborate with healthcare staff, seems important to reach a high‐quality healthcare organisation for patients with Inflammatory bowel disease.

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“…Also surgery, younger age and longer disease duration play an important role in the experience of the quality of care (van der Eijk et al . , Pallis et al . , Masachs et al .…”

Section: Introductionmentioning

confidence: 99%

Health care as perceived by persons with inflammatory bowel disease – a focus group study

Lesnovska

Frisman

Hjortswang

et al. 2017

Journal of Clinical Nursing

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“…Met name een multidisciplinaire aanpak, waarbij medische en nietmedische expertises verder op elkaar worden afgestemd, en de empirische evaluatie daarvan vormen een belangrijke uitdaging voor de toekomst. Recent ontwikkelde meetinstrumenten, de QUOTE-IBD, een-kwaliteit-vanzorg-maat, en de SIBDQ, een ziektespecifieke vragenlijst om de kwaliteit van leven te meten bij IBD-patie¨nten, komen hierbij van pas (Van der Eijk et al, 2001;Irvine et al, 1996). Relevante en actuele thema's die daarbij verdere verdieping verdienen zijn onder meer: communicatie, non-adherentie, vermoeidheid en stoppen met roken.…”

Section: Besluitunclassified

Serie: psychologische interventies bij somatische aandoeningen

Albersnagel¹,

Dijkstra²

2007

PSEG

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Inflammatory Bowel Disease. Medical and psychological aspects A review is presented in which the state of the art of behavioural-scientific research on inflammatory bowel disease (IBD) is sorted out. After a short introduction on medical aspects of the two diseases that constitute IBD, i.e. Crohn's disease and ulcerative colitis, the factors that may have an influence on the quality of life of IBD patients are outlined: disease activity, quality of care, mental state and personality aspects, life events and actual circumstances, and social support. In addition, attempts to assist IBD patients to handle their 'concerns' are described, insofar (controlled) research literature permits. The following topics are covered: stress, anxiety, depression, coping and communication; fatigue; smoking cessation and (non-)adherence. In closing, some recommendations are presented that may have relevance, especially for prevention. InleidingTot de inflammatoire darmziekten (Inflammatory Bowel Disease, IBD) worden twee ziektebeelden gerekend: de ziekte van Crohn (M. Crohn) en colitis ulcerosa (CU). Tussen deze (chronische) ziektebeelden bestaan overeenkomsten en verschillen. Wat de (medische) klachten betreft is er bij CU bijna altijd sprake van frequente, dunne stoelgang (diarree); bij M. Crohn is dat vaak het geval. Ook is er bij CU bijna altijd bloed of slijm bij de ontlasting; bij M. Crohn speelt dat soms. Verder komen bij M. Crohn buikpijn, gewichtsverlies en moeheid/te weinig energie vaak voor; bij CU soms. Ook rapporteren M. Crohn patie¨nten vaak klachten rond de anus, wat bij CU patie¨nten zeldzaam is. Bij medisch onderzoek en diagnostiek is ontsteking van de dunne en/of dikke darm karakteristiek voor M. Crohn, waar het bij CU uitsluitend gaat om ontsteking van (een deel) van de dikke darm. Bij CU is sprake van een aaneensluitende ontsteking van de dikke darm die zich beperkt tot de oppervlakkige slijmvlieslaag van de dikke darm. Bij M. Crohn slaat de ontsteking vaak een stuk over (skip lesions) maar is wel de gehele darmwand (transmuraal) bij de ontsteking betrokken. Een dergelijke transmurale ontsteking kan aanleiding geven tot perforaties, abcessen of weefselgangetjes (fistels) tussen de darm en andere organen (huid, vagina, blaas, ander stuk darm)

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“… 16 These domains strongly align with NHS England, National Clinical Guidelines Centre (NICE) and Institute of Medicine (IOM) definitions of quality in health care, which advocate that care should be patient‐centric, safe, effective, efficient and equitable. 17 , 18 A scoping review identified a range of IBD‐specific instruments that measure experience‐related concepts, such as patient satisfaction, 6 patient knowledge, 19 patient concerns, 20 self‐efficacy 21 and quality of care, 22 but no validated PREM. To fill this knowledge gap, this study aimed to develop a PREM for people with IBDs to support IBD service evaluation.…”

Section: Introductionmentioning

confidence: 99%

Development of an inflammatory bowel disease (IBD) Patient‐Reported Experience Measure (PREM): A patient‐led consensus work and ‘think aloud’ study for a quality improvement programme

Sheldon

Lillington

Simpson

et al. 2022

Health Expectations

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Background: Patient-Reported Experience Measures (PREMs) are key in improving healthcare quality, but no PREM exists for inflammatory bowel disease (IBD). This study aimed to co-produce a PREM with IBD service users for IBD service evaluation and quality improvement programme. Methods: A pool of 75 items was drawn from published survey instruments covering interactions with services and aspects of living with IBD. In Stage 1, during two workshops, eight expert service users reduced candidate items through a rankedchoice voting exercise and suggested further items. During Stage 2, 18 previously uninvolved people with IBD assessed the face and content validity of the candidate items in 'Think Aloud' interviews. During two final workshops (Stage 3), the expert service users removed, modified and added items based on the interview findings to produce a final version of the PREM. Results: Stage 1 generated a draft working PREM mapped to the following four domains: Patient-Centred Care; Quality; Accessibility; Communication and Involvement. The PREM included a set of nine items created by the expert group which shifted the emphasis from 'self-management' to 'living with IBD'. Stage 2 interviews showed that comprehension of the PREM was very good, although there were concerns about the wording, IBD-relevance and ambiguity of some items. During the final two workshops in Stage 3, the expert service users removed 7 items, modified

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Quality of health care in inflammatory bowel disease: development of a reliable questionnaire (QUOTE-IBD) and first results

Abstract: A short, valid, reliable questionnaire was developed to measure the opinions of patients with inflammatory bowel disease on quality of health care. The QUOTE-IBD can be used for identification of areas for improvement, with the aim of optimizing health care in inflammatory bowel disease.

Cited by 21 publications

References 28 publications

Health care as perceived by persons with inflammatory bowel disease – a focus group study

Health care as perceived by persons with inflammatory bowel disease – a focus group study

Serie: psychologische interventies bij somatische aandoeningen

Development of an inflammatory bowel disease (IBD) Patient‐Reported Experience Measure (PREM): A patient‐led consensus work and ‘think aloud’ study for a quality improvement programme

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