Quality of life: Guidelines for the care of people with spina bifida.
Myelomeningocele
continence
health-related quality of life
neural tube defects
pain
quality of life
spina bifida
Journal
Journal of pediatric rehabilitation medicine
ISSN: 1875-8894
Titre abrégé: J Pediatr Rehabil Med
Pays: Netherlands
ID NLM: 101490944
Informations de publication
Date de publication:
Historique:
pubmed:
17
12
2020
medline:
9
10
2021
entrez:
16
12
2020
Statut:
ppublish
Résumé
Quality of Life (QOL) and Health-Related Quality of Life (HRQOL) are important concepts across the life span for those with spina bifida (SB). This article discusses the SB Quality of Life Healthcare Guidelines from the 2018 Spina Bifida Association's Fourth Edition of the Guidelines for the Care of People with Spina Bifida. The focus of these QOL Guidelines was to summarize the evidence and expert opinions on how to mitigate factors that negatively impact QOL/HRQOL or enhance the factors positively related to QOL/HRQOL, the measurement of QOL/HRQOL and the gaps that need to be addressed in future research.
Identifiants
pubmed: 33325410
pii: PRM200732
doi: 10.3233/PRM-200732
pmc: PMC7838993
doi:
Types de publication
Journal Article
Research Support, U.S. Gov't, P.H.S.
Review
Langues
eng
Sous-ensembles de citation
IM
Pagination
565-582Subventions
Organisme : NCBDD CDC HHS
ID : U01 DD001077
Pays : United States
Organisme : ACL HHS
ID : U01DD001077
Pays : United States
Références
J Pediatr Psychol. 2013 Jan-Feb;38(1):50-62
pubmed: 22976508
J Urol. 2007 Oct;178(4 Pt 2):1611-4
pubmed: 17707040
J Pediatr Rehabil Med. 2016 Nov 30;9(4):287-302
pubmed: 27935566
J Pediatr Psychol. 2015 May;40(4):419-30
pubmed: 25434043
Clin Orthop Relat Res. 2011 May;469(5):1230-5
pubmed: 21042893
Eur J Obstet Gynecol Reprod Biol. 2014 Oct;181:214-22
pubmed: 25171266
J Urol. 2017 Mar;197(3 Pt 2):885-891
pubmed: 28131501
Qual Life Res. 2010 Dec;19(10):1487-500
pubmed: 20668950
Urology. 2016 Jan;87:178-84
pubmed: 26456744
Qual Life Res. 2002 Sep;11(6):575-81
pubmed: 12206578
BMC Public Health. 2012 Aug 15;12:655
pubmed: 22894722
J Pediatr Urol. 2018 Jun;14(3):279.e1-279.e8
pubmed: 29606358
Med Care. 2012 Dec;50(12):1060-70
pubmed: 22922434
Dev Med Child Neurol. 2011 Jul;53(7):647-52
pubmed: 21410695
Dev Med Child Neurol. 2006 Jun;48(6):442-9
pubmed: 16700934
Qual Life Res. 1997 Mar;6(2):123-32
pubmed: 9161112
Am J Phys Med Rehabil. 2013 Aug;92(8):641-55
pubmed: 23867887
Psychol Med. 1998 May;28(3):551-8
pubmed: 9626712
Dev Med Child Neurol. 2008 Jun;50(6):456-61
pubmed: 18371093
Clin Rehabil. 2005 Sep;19(6):677-85
pubmed: 16180605
J Neurosurg. 2004 Nov;101(2 Suppl):134-40
pubmed: 15835099
J Intellect Disabil Res. 2011 Dec;55(12):1098-114
pubmed: 21883596
Cent European J Urol. 2015;68(1):61-7
pubmed: 25914840
J Rehabil Med. 2010 Jan;42(1):56-9
pubmed: 20111845
Clin J Pain. 2006 Nov-Dec;22(9):784-9
pubmed: 17057560
Health Qual Life Outcomes. 2005 May 16;3:34
pubmed: 15904527
Cent European J Urol. 2017;70(3):306-313
pubmed: 29104796
Arch Dis Child. 2000 Oct;83(4):293-7
pubmed: 10999858
Dev Disabil Res Rev. 2010;16(1):47-59
pubmed: 20419771
Qual Life Res. 2004 Mar;13(2):299-310
pubmed: 15085902
Qual Life Res. 2015 Oct;24(10):2355-64
pubmed: 25863685
Res Dev Disabil. 2015 Mar;38:288-300
pubmed: 25577179
Dev Med Child Neurol. 2007 Jun;49(6):458-63
pubmed: 17518933
J Urol. 2016 Apr;195(4 Pt 2):1263-9
pubmed: 26926556
Rehabil Nurs. 1994 Jul-Aug;19(4):229-38
pubmed: 7831524
Arch Phys Med Rehabil. 2014 Dec;95(12):2312-9
pubmed: 25168376
Urology. 2017 May;103:261-271
pubmed: 28163084
J Urol. 2008 Oct;180(4 Suppl):1846-51; discussion 1851
pubmed: 18721969
Childs Nerv Syst. 2016 Jan;32(1):105-10
pubmed: 26362680
Spine (Phila Pa 1976). 2007 Sep 1;32(19 Suppl):S120-5
pubmed: 17728678
J Pediatr. 2013 May;162(5):993-8
pubmed: 23164316
Disabil Health J. 2020 Apr;13(2):100816
pubmed: 31248776
J Pediatr Rehabil Med. 2018;11(2):103-114
pubmed: 30010149
Pediatr Int. 2019 Dec;61(12):1232-1238
pubmed: 31487089
J Spinal Cord Med. 2007;30 Suppl 1:S112-8
pubmed: 17874696
J Pediatr Psychol. 2015 Apr;40(3):320-35
pubmed: 25427551
Am J Phys Med Rehabil. 2009 Dec;88(12):1002-6
pubmed: 19935183
Health Qual Life Outcomes. 2007 Jan 03;5:1
pubmed: 17201920
J Holist Nurs. 2002 Sep;20(3):279-304
pubmed: 12240958
J Neurosurg Pediatr. 2015 Feb;15(2):144-9
pubmed: 25415252
J Pediatr. 2013 May;162(5):894-5
pubmed: 23295142
Rehabil Nurs. 2005 Sep-Oct;30(5):180-7; discussion 188
pubmed: 16175923
Dev Med Child Neurol. 2009 Nov;51(11):886-94
pubmed: 19416327
Health Qual Life Outcomes. 2005 Sep 07;3:55
pubmed: 16146573
Res Dev Disabil. 2013 Sep;34(9):2725-33
pubmed: 23787116
Spinal Cord. 2013 May;51(5):384-8
pubmed: 23439065
Bone Joint J. 2014 Sep;96-B(9):1244-51
pubmed: 25183598
Acta Oncol. 2019 May;58(5):801-810
pubmed: 30736716
Childs Nerv Syst. 2020 Mar;36(3):611-616
pubmed: 31423555
Child Care Health Dev. 2016 Sep;42(5):625-43
pubmed: 27381478
Dev Med Child Neurol. 2009 Aug;51(8):660-9
pubmed: 19627340