Quality of care in inflammatory bowel disease: actual health service experiences fall short of the standards.
Intern Med J
; 50(10): 1216-1225, 2020 Oct.
Article
em En
| MEDLINE
| ID: mdl-31707751
ABSTRACT
BACKGROUND:
Quality of care in inflammatory bowel disease (IBD) has received much attention internationally; however, the available surveys focus on health professionals rather than patients.AIMS:
To assess the experiences of healthcare for people living with IBD against established Australian IBD Standards.METHODS:
An online cross-sectional survey was conducted with Australians ≥16 years old recruited via Crohn's & Colitis Australia membership, public and private clinics and the Royal Flying Doctor Service. Participants completed a questionnaire incorporating items addressing the Australian IBD Standards 2016, the Picker Patient Experience Questionnaire, IBD Control Survey and the Manitoba Index.RESULTS:
Complete data were provided by 731 respondents (71.5% female, median age 46 years, ranging from 16 to 84 years). While the majority (74.8%) were satisfied with their IBD healthcare, the care reported did not meet the Australian IBD Standards. Overall, 32.4% had access to IBD nurses, 30.9% to a dietician and 12% to a psychologist in their treating team. Participants managed by public IBD clinics were most likely to have access to an IBD nurse (83.7%), helpline (80.7%) and research trials (37%). One third of respondents reported waiting >14 days to see a specialist when their IBD flared. Participants received enough information, mostly from medical specialists (88.8%) and IBD nurses (79.4%). However, 51% wanted to be more involved in their healthcare.CONCLUSIONS:
These data show discordance between expectations of patients and national standards with current levels of service provision, which fail to deliver equitable and comprehensive IBD care.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Doenças Inflamatórias Intestinais
/
Colite
Tipo de estudo:
Diagnostic_studies
/
Guideline
/
Observational_studies
/
Prevalence_studies
/
Risk_factors_studies
Limite:
Adolescent
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Female
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Humans
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Male
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Middle aged
País/Região como assunto:
Oceania
Idioma:
En
Ano de publicação:
2020
Tipo de documento:
Article