Parents' report on the health care management of spina bifida in early childhood
(2022) In Journal of Pediatric Rehabilitation Medicine 15(4). p.621-631- Abstract
PURPOSE: This study aimed to describe health care use by type of health providers and care settings visited by children with spina bifida (SB) and to compare this use between children with and without a shunt.
METHODS: Health care use data were extracted from a larger study on the health and functioning of children with SB aged 3-6 years. The present study focused on the medical information subsection of a parent-reported survey related to SB care, general care, specialty care (e.g., neurosurgery), emergency care, and complications related to SB and shunts.
RESULTS: Parents of 101 children with SB participated. Most of the children were male with myelomeningocele and had a shunt. They visited a health care provider for SB... (More)
PURPOSE: This study aimed to describe health care use by type of health providers and care settings visited by children with spina bifida (SB) and to compare this use between children with and without a shunt.
METHODS: Health care use data were extracted from a larger study on the health and functioning of children with SB aged 3-6 years. The present study focused on the medical information subsection of a parent-reported survey related to SB care, general care, specialty care (e.g., neurosurgery), emergency care, and complications related to SB and shunts.
RESULTS: Parents of 101 children with SB participated. Most of the children were male with myelomeningocele and had a shunt. They visited a health care provider for SB care an average of 7.4 times and a specialist an average of 11.9 times in the previous 12 months. Most visited a multidisciplinary clinic for SB-related care and a private physician's office for general care. Children with a shunt had more SB-related medical visits, more visits to a specialist, and a greater number of different types of specialists than those without it. Frequency of emergency room visits did not differ between the two groups. Health providers informed parents about headaches, vomiting, and fever as signs of complications, and some parents did report shunt-related complications.
CONCLUSION: SB is a complex medical condition requiring that children receive medical care from various medical specialists, especially for children with a shunt. Findings on health care use suggest high levels of monitoring and care coordination that parents navigate to care for their child.
(Less)
- author
- Ong, Katherine S ; Reeder, Matthew ; Alriksson-Schmidt, Ann I LU ; Rice, Sydney and Feldkamp, Marcia L
- organization
- publishing date
- 2022
- type
- Contribution to journal
- publication status
- published
- subject
- keywords
- Child, Humans, Male, Child, Preschool, Female, Spinal Dysraphism/therapy, Meningomyelocele/complications, Parents, Surveys and Questionnaires, Delivery of Health Care
- in
- Journal of Pediatric Rehabilitation Medicine
- volume
- 15
- issue
- 4
- pages
- 621 - 631
- publisher
- IOS Press
- external identifiers
-
- scopus:85145425861
- pmid:36530103
- ISSN
- 1874-5393
- DOI
- 10.3233/PRM-220027
- language
- English
- LU publication?
- yes
- id
- ad1572c9-a29e-408b-9e6a-d5a3b5569aef
- date added to LUP
- 2023-01-04 13:37:57
- date last changed
- 2024-04-15 12:40:56
@article{ad1572c9-a29e-408b-9e6a-d5a3b5569aef,
abstract = {{<p>PURPOSE: This study aimed to describe health care use by type of health providers and care settings visited by children with spina bifida (SB) and to compare this use between children with and without a shunt.</p><p>METHODS: Health care use data were extracted from a larger study on the health and functioning of children with SB aged 3-6 years. The present study focused on the medical information subsection of a parent-reported survey related to SB care, general care, specialty care (e.g., neurosurgery), emergency care, and complications related to SB and shunts.</p><p>RESULTS: Parents of 101 children with SB participated. Most of the children were male with myelomeningocele and had a shunt. They visited a health care provider for SB care an average of 7.4 times and a specialist an average of 11.9 times in the previous 12 months. Most visited a multidisciplinary clinic for SB-related care and a private physician's office for general care. Children with a shunt had more SB-related medical visits, more visits to a specialist, and a greater number of different types of specialists than those without it. Frequency of emergency room visits did not differ between the two groups. Health providers informed parents about headaches, vomiting, and fever as signs of complications, and some parents did report shunt-related complications.</p><p>CONCLUSION: SB is a complex medical condition requiring that children receive medical care from various medical specialists, especially for children with a shunt. Findings on health care use suggest high levels of monitoring and care coordination that parents navigate to care for their child.</p>}},
author = {{Ong, Katherine S and Reeder, Matthew and Alriksson-Schmidt, Ann I and Rice, Sydney and Feldkamp, Marcia L}},
issn = {{1874-5393}},
keywords = {{Child; Humans; Male; Child, Preschool; Female; Spinal Dysraphism/therapy; Meningomyelocele/complications; Parents; Surveys and Questionnaires; Delivery of Health Care}},
language = {{eng}},
number = {{4}},
pages = {{621--631}},
publisher = {{IOS Press}},
series = {{Journal of Pediatric Rehabilitation Medicine}},
title = {{Parents' report on the health care management of spina bifida in early childhood}},
url = {{http://dx.doi.org/10.3233/PRM-220027}},
doi = {{10.3233/PRM-220027}},
volume = {{15}},
year = {{2022}},
}