Skip to main content

Lund University Publications

LUND UNIVERSITY LIBRARIES

Health care utilisation among older people with Down syndrome compared to specific medical guidelines for health surveillance : a Swedish national register study

Ahlström, G. LU orcid ; Axmon, A. LU orcid ; Sandberg, M. LU orcid and Flygare Wallén, E. (2020) In BMC Health Services Research 20(1).
Abstract

Background: Specific medical guidelines for health surveillance exist for people with Down syndrome (DS) since 25 years but knowledge of adherence to the guidelines is lacking. The guidelines were developed to avoid unnecessary suffering from preventable conditions. The aims of the study were to investigate 1) planned health care visits in relation to the co-morbidities described in specific medical guidelines as a measure of adherence, 2) unplanned health care visits as a measure of potentially unmet health care needs and 3) gender differences in health care utilisation among older people with DS. Methods: This register-based study includes people with DS (n = 472) from a Swedish national cohort of people with intellectual disability... (More)

Background: Specific medical guidelines for health surveillance exist for people with Down syndrome (DS) since 25 years but knowledge of adherence to the guidelines is lacking. The guidelines were developed to avoid unnecessary suffering from preventable conditions. The aims of the study were to investigate 1) planned health care visits in relation to the co-morbidities described in specific medical guidelines as a measure of adherence, 2) unplanned health care visits as a measure of potentially unmet health care needs and 3) gender differences in health care utilisation among older people with DS. Methods: This register-based study includes people with DS (n = 472) from a Swedish national cohort of people with intellectual disability (n = 7936), aged 55 years or more, and with at least one support according to the disability law, in 2012. Data on inpatient and outpatient specialist health care utilisation were collected from the National Patient Register for 2002–2012. Results: A total of 3854 inpatient and outpatient specialist health care visits were recorded during the 11 years, of which 54.6% (n = 2103) were planned, 44.0% (n = 1695) unplanned and 1.4% (n = 56) lacked information. More than half of the visits, 67.0% (n = 2582) were outpatient health care thus inpatient 33% (n = 1272). Most planned visits (29.4%, n = 618) were to an ophthalmology clinic, and most unplanned visits to an internal medicine clinic (36.6%, n = 621). The most common cause for planned visits was cataract, found at least once for 32.8% in this cohort, followed by arthrosis (8.9%), epilepsy (8.9%) and dementia (6.6%). Pneumonia, pain, fractures and epilepsy each accounted for at least one unplanned visit for approximately one-fourth of the population (27.1, 26.9, 26.3 and 19.7% respectively). Men and women had similar numbers of unplanned visits. However, women were more likely to have visits for epilepsy or fractures, and men more likely for pneumonia. Conclusions: Increased awareness of existing specific medical guidelines for people with DS is vital for preventive measures. The relatively few planned health care visits according to the medical guidelines together with a high number of unplanned visits caused by conditions which potentially can be prevented suggest a need of improved adherence to medical guidelines.

(Less)
Please use this url to cite or link to this publication:
author
; ; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Aged, Comorbidity, Down syndrome, Guideline adherence, Inpatients, Intellectual disability, Mental retardation, Outpatient care, Specialist health care
in
BMC Health Services Research
volume
20
issue
1
article number
949
publisher
BioMed Central (BMC)
external identifiers
  • scopus:85092711980
  • pmid:33059705
ISSN
1472-6963
DOI
10.1186/s12913-020-05800-7
project
Ageing persons with intellectual disability, health and mortality, healthcare utilization and social welfare: a Swedish national longitudinal population study
language
English
LU publication?
yes
id
2d9e856c-0fa0-4e01-b80c-a7470451a506
date added to LUP
2020-10-25 08:03:49
date last changed
2024-05-01 20:00:52
@article{2d9e856c-0fa0-4e01-b80c-a7470451a506,
  abstract     = {{<p>Background: Specific medical guidelines for health surveillance exist for people with Down syndrome (DS) since 25 years but knowledge of adherence to the guidelines is lacking. The guidelines were developed to avoid unnecessary suffering from preventable conditions. The aims of the study were to investigate 1) planned health care visits in relation to the co-morbidities described in specific medical guidelines as a measure of adherence, 2) unplanned health care visits as a measure of potentially unmet health care needs and 3) gender differences in health care utilisation among older people with DS. Methods: This register-based study includes people with DS (n = 472) from a Swedish national cohort of people with intellectual disability (n = 7936), aged 55 years or more, and with at least one support according to the disability law, in 2012. Data on inpatient and outpatient specialist health care utilisation were collected from the National Patient Register for 2002–2012. Results: A total of 3854 inpatient and outpatient specialist health care visits were recorded during the 11 years, of which 54.6% (n = 2103) were planned, 44.0% (n = 1695) unplanned and 1.4% (n = 56) lacked information. More than half of the visits, 67.0% (n = 2582) were outpatient health care thus inpatient 33% (n = 1272). Most planned visits (29.4%, n = 618) were to an ophthalmology clinic, and most unplanned visits to an internal medicine clinic (36.6%, n = 621). The most common cause for planned visits was cataract, found at least once for 32.8% in this cohort, followed by arthrosis (8.9%), epilepsy (8.9%) and dementia (6.6%). Pneumonia, pain, fractures and epilepsy each accounted for at least one unplanned visit for approximately one-fourth of the population (27.1, 26.9, 26.3 and 19.7% respectively). Men and women had similar numbers of unplanned visits. However, women were more likely to have visits for epilepsy or fractures, and men more likely for pneumonia. Conclusions: Increased awareness of existing specific medical guidelines for people with DS is vital for preventive measures. The relatively few planned health care visits according to the medical guidelines together with a high number of unplanned visits caused by conditions which potentially can be prevented suggest a need of improved adherence to medical guidelines.</p>}},
  author       = {{Ahlström, G. and Axmon, A. and Sandberg, M. and Flygare Wallén, E.}},
  issn         = {{1472-6963}},
  keywords     = {{Aged; Comorbidity; Down syndrome; Guideline adherence; Inpatients; Intellectual disability; Mental retardation; Outpatient care; Specialist health care}},
  language     = {{eng}},
  month        = {{12}},
  number       = {{1}},
  publisher    = {{BioMed Central (BMC)}},
  series       = {{BMC Health Services Research}},
  title        = {{Health care utilisation among older people with Down syndrome compared to specific medical guidelines for health surveillance : a Swedish national register study}},
  url          = {{http://dx.doi.org/10.1186/s12913-020-05800-7}},
  doi          = {{10.1186/s12913-020-05800-7}},
  volume       = {{20}},
  year         = {{2020}},
}