Inflammatory Bowel Disease: Patients' Expectations in the 1990s

Probert, Chris; Jf, Mayberry

doi:10.1177/014107689108400305

Cited by 33 publications

(18 citation statements)

References 9 publications

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“…Three European studies reported that 70%-80% of participants desired more information about their disease, as they viewed their knowledge to be less than adequate. [15][16][17] There are more recent studies (published since 2000) that present a contrary view of patient knowledge. For instance, only 10% of Irish IBD patients (n ¼ 142) felt that they were poorly informed about their disease and only 15% were very unhappy with their knowledge, while 36% felt they were very well informed and 37% were very happy with their level of knowledge.…”

Section: Discussionmentioning

confidence: 99%

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Information needs and preferences of recently diagnosed patients with inflammatory bowel disease

Bernstein

Promislow

Carr

et al. 2011

Inflammatory Bowel Diseases

111

112

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Given the large number of topics judged by patients to be important and the complexity of the information required, it would be very difficult to communicate this information in oral discussion during typical consultation visits. Supplementing physician-patient consultations with well-designed written information or a Website recommendation may produce more effective communication and education. Patients rated these sources of information as having a high level of acceptability.

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Section: Discussionmentioning

confidence: 99%

“…[15][16][17][18]21 This lack of uniformity may reflect varied duration of disease among participants or different methods used to assess information needs. Our study focused on the period shortly after diagnosis, a time when patients are just starting to deal with the challenge of coping with a serious and often chronic illness.…”

Section: Discussionmentioning

confidence: 99%

Information needs and preferences of recently diagnosed patients with inflammatory bowel disease

Bernstein

Promislow

Carr

et al. 2011

Inflammatory Bowel Diseases

111

112

View full text Add to dashboard Cite

show abstract

“…Patients with in¯ammatory bowel disease voice considerable concern about obtaining all forms of insurance and mortgage. 37 In a study from Leicester in the UK, the attitudes of 50 major insurance companies to patients with in¯ammatory bowel disease, and the experience of a sample of in¯ammatory bowel disease patients were investigated. 38 A standard letter from a`typical' Crohn's disease patient (a 31-year-old male with a disease duration of 6 years, inactive for 5 years after one small bowel resection) was sent out, requesting information about premiums.…”

Section: Life Insurance Issues and Employmentmentioning

confidence: 99%

Clinical economics review: medical management of inflammatory bowel disease

Bodger

et al. 1999

Aliment Pharmacol Ther

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Inflammatory bowel diseases, although they are uncommon and rarely fatal, typically present during the period of economically productive adult life. Patients may require extensive therapeutic intervention as a result of the chronic, relapsing nature of the diseases. Their medical management includes oral and topical 5-amino salicylic acid derivatives and corticosteroids, as well as antibiotics and immunosuppressive therapies. Assessing the cost-effectiveness of rival treatments requires valid, reliable global assessments of outcome which consider quality of life, as well as the usual clinical end-points. Macro-economic studies of the overall impact of inflammatory bowel disease on health care systems have so far been largely confined to North America, where the total annual US costs, both direct and indirect, incurred by the estimated 380 000-480 000 sufferers has been put at around US2bn. Drugs were estimated to account for only 10% of total costs, whereas surgery and hospitalization account for approximately half. Studies from Europe suggest that the proportion of patients with Crohn's disease and ulcerative colitis who are capable of full time work is 75% and 90%, respectively. However, whilst only a minority of inflammatory bowel disease patients suffer chronic ill health and their life expectancy is normal, obtaining life assurance may be problematic, suggesting a misconception that inflammatory bowel disease frequently results in a major impact on an individual's economic productivity.

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“…Most notably, within gastroenterology, have been the developments in inflammatory bowel disease (IBD) care. In 1991 Probert et al conducted a questionnaire survey regarding disease counselling preferences in 59 patients with IBD. This landmark paper identified a significant number (60%) who required further information regarding their condition.…”

Section: Introductionmentioning

confidence: 99%

Barrett's oesophagus: A qualitative study of patient burden, care delivery experience and follow‐up needs

Britton

Hamdy

McLaughlin

et al. 2018

Health Expectations

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BackgroundBarrett's oesophagus (BO), a precursor to oesophageal adenocarcinoma, requires long‐term endoscopic surveillance. The rising incidence of this chronic disease has implications for service provision and patient burden. Few studies have explored BO patients’ personal burden, care delivery experience and participation in health‐care delivery decisions.ObjectiveTo identify and explore factors impacting BO patients’ health‐related quality of life, follow‐up needs and views on new models of follow‐up care.DesignAn exploratory qualitative approach was adopted using semi‐structured, in‐depth, one‐to‐one interviews, audio‐recorded and transcribed verbatim. Patients undergoing BO surveillance, at a single NHS hospital, were recruited using purposive sampling with the aim of achieving maximum variation. Data were analysed using framework analysis approach, supported by NVivo Pro 11.ResultsData saturation occurred after 20 participant interviews. Ten subthemes and three main themes emerged from the analysis: (a) burden of disease—symptom control, worry of oesophageal cancer and surveillance endoscopy; (b) follow‐up experiences—follow‐up care, at this NHS hospital, was found to be inconsistent and often inadequate to meet patients’ needs, in particular a lack of disease‐specific information; and (c) follow‐up needs—participants sought enhanced communication, organization and structure of care. They highly valued face‐to‐face interaction with a specialist, and the concept of direct secondary care access in‐between endoscopies was reassuring to participants.ConclusionsThis qualitative research provides an in‐depth account of the patients’ perspective of BO, the effectiveness of follow‐up care and patient opinion on new follow‐up systems.

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Inflammatory Bowel Disease: Patients' Expectations in the 1990s

Cited by 33 publications

References 9 publications

Information needs and preferences of recently diagnosed patients with inflammatory bowel disease

Information needs and preferences of recently diagnosed patients with inflammatory bowel disease

Clinical economics review: medical management of inflammatory bowel disease

Barrett's oesophagus: A qualitative study of patient burden, care delivery experience and follow‐up needs

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