Influence of quality of care on quality of life in inflammatory bowel disease (IBD): literature review and studies planned

Eijk, Ingrid van der; Stockbrügger, Reinhold W.; Rüssel, Maurice G.

doi:10.1016/s0953-6205(00)00095-9

Cited by 31 publications

(11 citation statements)

References 70 publications

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“…It is influenced by social, cultural, psychological, and disease-related factors [5,6]. In Portugal, data in this area are generally lacking.…”

Section: Introductionmentioning

confidence: 99%

Inflammatory Bowel Disease: A Patient’s and Caregiver’s Perspective

Magro¹,

Portela²,

Lago³

et al. 2009

Dig Dis Sci

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The purpose of this study was to conduct a survey examining the impact of inflammatory bowel disease (IBD) on patients' and their caregivers' daily activities. Questionnaires were distributed to patients registered in the APDI (Portuguese Association for IBD) database and their respective caregivers in 2007. Of 422 patient respondents, 251 had Crohn's disease (CD) and 171 had ulcerative colitis (UC), with the majority of patients being women (58.1%) and aged over 40 years (37.4%). The number of disease flares experienced by IBD patients was slightly higher for patients with CD than for patients with UC (2.64 vs. 2.34), and surgery was more often required in CD patients as compared to UC patients (42.4 vs. 7%). Sixty percent (60%) of patients reported having no problems with mobility, daily activities, or personal hygiene; however, over half of all patients experienced some pain and anxiety. Adult patients and children and adolescents respectively experienced time off work or school due to their disease but caregivers were not affected in this regard. The caregivers life (N=324) was affected by anxiety, with the major concern reported as the risk of the patient developing cancer. Both IBD patients and caregivers thought that the provision of information on new drugs and contact time with a doctor would have the biggest impact on improving care. The symptoms and complications of IBD have a considerable impact on the lives of patients and their caregivers, and several actions could be taken to improve their care.

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“…It is influenced by social, cultural, psychological, and disease-related factors [5,6]. In Portugal, data in this area are generally lacking.…”

Section: Introductionmentioning

confidence: 99%

Inflammatory Bowel Disease: A Patient’s and Caregiver’s Perspective

Magro¹,

Portela²,

Lago³

et al. 2009

Dig Dis Sci

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“…Many factors are involved in HRQoL perception; some are directly related to IBD (5), and some are not. Quality of healthcare received stands out amongst the latter in such a way that improved healthcare favors improved HRQoL (6). Therefore, the quality of healthcare received by patients with IBD should be as high as possible, and it should also fulfil the healthcare needs of the population.…”

Section: Introductionmentioning

confidence: 99%

The opinion of patients with inflammatory bowel disease on healthcare received

Casellas

Fontanet

Borruel

et al. 2004

Rev. esp. enferm. dig.

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Background: an item to consider in analyzing a healthcare model for a population group suffering from chronic disease is necessary health-care resources, their use, and their rating by endusers. Regarding inflammatory bowel disease (IBD), healthcare resources used by patients are numerous and varied, and yet they have been never assessed. Design: an anonymous self-rated questionnaire has been developed with 24 basic questions on overall disease, who is monitoring the patient, how are visits scheduled, need for urgent care, patient view on how control may be improved, etc. This questionnaire was sent to 393 patients who were asked to fill it out and then return it by mail. Results: two hundred and thirty-seven patients returned a filled-out questionnaire. Most patients were followed up in a hospital, and only 8.8% were being monitored by a general practitioner or area specialist. Ninety-two percent of patients reported visits were routinely scheduled irrespective of clinical status, and 79.6% of patients reported having occasionally presented to an emergency department, because of not knowing what to do or due to having no other resources available in 25.2% of times. This entails that 38% of visits to an emergency unit may be prevented with a better understanding of disease or by means of a phone call. Thirty percent of patients reported that current healthcare is inadequate in terms of contents, form, or waiting time. In all, 97.8% of patients feel that information and knowledge on their disease would help in its control, and 69.6% consider that adequate information would allow them to initiate a proper treatment before visiting their doctor. Family care is another poorly lookedafter aspect that 74.6% of subjects believe would be of help in controlling their disease. Conclusions: overall, the opinion of patients with IBD on healthcare received is good; however, a number of deficiencies were detected, as is the case with insufficient information, care of family members, and healthcare resources accessibility/agility.

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“…IBD is chronic and some of these patients are faced with various challenges, such as recurrent hospitalizations, surgical interventions, definitive stoma, occurrence of extra-intestinal manifestations, and long-lasting biologic therapy [1-8,17]. The degree of patient satisfaction has been found to affect the quality of life of IBD patients, as well as their adherence to both medical treatment and other aspects of care [18-20]. Moreover, the United Kingdom IBD Standards Group emphasizes the importance of maintaining patient-centered care [21].…”

Section: Discussionmentioning

confidence: 99%

Satisfaction and expectations of patients with inflammatory bowel disease on biologic therapy: a multicenter study

Guarini

Biagini

Capaldi³

et al. 2016

aog

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BackgroundThe satisfaction perceived by patients with chronic diseases affects clinical outcomes and healthcare costs. Some patients with inflammatory bowel disease (IBD) develop a more severe form requiring biologic therapy. We assessed the quality of care perceived by IBD patients in dedicated centers.MethodsThis prospective, cross-sectional, multicenter study enrolled consecutive IBD patients who underwent biologic therapy in the participating centers. The nurses directly involved in the management of these patients explained the rationale of the survey, provided a specific questionnaire (CACHE), and collected data. The CACHE included 31 items structured in 6 domains: staff care, clinician care, center facilities, patient information, accessibility, and patient support. Patients’ satisfaction score for each domain ranged from 0 to 100%.ResultsSixteen different Italian centers participated and a total of 450 patients were enrolled (283 with Crohn’s disease and 167 with ulcerative colitis). The overall score was 82.2±19.6, satisfaction with the clinicians care scoring the highest (87.6±3.2) and the information provided to the patient scoring the lowest (70.7±7.9). More specifically, it emerged that 5.2-19.5% of patients were unsatisfied with: 1) the communication between the IBD medical team and primary care physicians; 2) information received about the disease or patients’ associations; and 3) the accessibility of the center.ConclusionAlthough our data revealed an acceptably high rate of global satisfaction among IBD patients receiving biologic therapy, more effort should be made to improve patient information and communication between IBD teams, other specialists and primary care physicians.

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Influence of quality of care on quality of life in inflammatory bowel disease (IBD): literature review and studies planned

Cited by 31 publications

References 70 publications

Inflammatory Bowel Disease: A Patient’s and Caregiver’s Perspective

Inflammatory Bowel Disease: A Patient’s and Caregiver’s Perspective

The opinion of patients with inflammatory bowel disease on healthcare received

Satisfaction and expectations of patients with inflammatory bowel disease on biologic therapy: a multicenter study

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