Psychosocial wellbeing among children and adults with arthrogryposis: a scoping review

Abstract Background Arthrogryposis multiplex congenita (AMC) is a group of congenital conditions characterized by joint contractures in two or more body areas. Management of AMC starts early in life and focuses on improving mobility and function through intensive rehabilitation and surgical interven...

Descripción completa

Guardado en:

Detalles Bibliográficos
Autores principales:	Sarah Cachecho, Jill Boruff, Trudy Wong, Francis Lacombe, Noemi Dahan-Oliel
Formato:	article
Lenguaje:	EN
Publicado:	BMC 2021
Materias:	Arthrogryposis multiplex congenita Psychosocial wellbeing Quality of life Outcome measures Computer applications to medicine. Medical informatics R858-859.7
Acceso en línea:	https://doaj.org/article/13e64cd622b64315bc7eeb7a6b390900
Etiquetas:	Agregar Etiqueta Sin Etiquetas, Sea el primero en etiquetar este registro!

id	oai:doaj.org-article:13e64cd622b64315bc7eeb7a6b390900
record_format	dspace
spelling	oai:doaj.org-article:13e64cd622b64315bc7eeb7a6b3909002021-12-05T12:18:41ZPsychosocial wellbeing among children and adults with arthrogryposis: a scoping review10.1186/s12955-021-01896-51477-7525https://doaj.org/article/13e64cd622b64315bc7eeb7a6b3909002021-11-01T00:00:00Zhttps://doi.org/10.1186/s12955-021-01896-5https://doaj.org/toc/1477-7525Abstract Background Arthrogryposis multiplex congenita (AMC) is a group of congenital conditions characterized by joint contractures in two or more body areas. Management of AMC starts early in life and focuses on improving mobility and function through intensive rehabilitation and surgical interventions. Psychosocial wellbeing is an important determinant of health and the psychosocial experience of individuals with AMC should be considered in the management of this condition. The aim of this scoping review was to explore what is known about the psychosocial wellbeing of children and adults with AMC, to identify the outcome measures used and to explore the factors associated with psychosocial outcomes in this population. Methods A comprehensive search in four databases was conducted. Articles discussing psychosocial outcomes and outcome measures used with children or adults with AMC were included. Data on the measures used, psychosocial outcomes, and factors associated with psychosocial outcomes, were extracted and analyzed descriptively and synthesized narratively. Results Seventeen articles were included in this scoping review, ten including the pediatric population, six including adults and one article including both children and adults with AMC. The most commonly used outcome measures were the PODCI in the pediatric studies, and the SF-36 in studies on adults. In the pediatric studies, psychosocial outcomes were often secondary, compared to the studies on adults. Results showed that in both children and adults, psychosocial outcomes are comparable with the levels of the general population. Qualitative studies reflected the affective needs of this population and issues with emotional wellbeing. Factors such as fatigue and pain were associated with poorer psychosocial outcomes in adults with an impact on social relationships, intimacy and family planning. Conclusion Validated outcome measures, qualitative approaches and longitudinal studies are needed to better understand the psychosocial outcomes in AMC over time. Psychosocial support should be part of the multidisciplinary management of AMC throughout the lifespan.Sarah CachechoJill BoruffTrudy WongFrancis LacombeNoemi Dahan-OlielBMCarticleArthrogryposis multiplex congenitaPsychosocial wellbeingQuality of lifeOutcome measuresComputer applications to medicine. Medical informaticsR858-859.7ENHealth and Quality of Life Outcomes, Vol 19, Iss 1, Pp 1-18 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Arthrogryposis multiplex congenita Psychosocial wellbeing Quality of life Outcome measures Computer applications to medicine. Medical informatics R858-859.7
spellingShingle	Arthrogryposis multiplex congenita Psychosocial wellbeing Quality of life Outcome measures Computer applications to medicine. Medical informatics R858-859.7 Sarah Cachecho Jill Boruff Trudy Wong Francis Lacombe Noemi Dahan-Oliel Psychosocial wellbeing among children and adults with arthrogryposis: a scoping review
description	Abstract Background Arthrogryposis multiplex congenita (AMC) is a group of congenital conditions characterized by joint contractures in two or more body areas. Management of AMC starts early in life and focuses on improving mobility and function through intensive rehabilitation and surgical interventions. Psychosocial wellbeing is an important determinant of health and the psychosocial experience of individuals with AMC should be considered in the management of this condition. The aim of this scoping review was to explore what is known about the psychosocial wellbeing of children and adults with AMC, to identify the outcome measures used and to explore the factors associated with psychosocial outcomes in this population. Methods A comprehensive search in four databases was conducted. Articles discussing psychosocial outcomes and outcome measures used with children or adults with AMC were included. Data on the measures used, psychosocial outcomes, and factors associated with psychosocial outcomes, were extracted and analyzed descriptively and synthesized narratively. Results Seventeen articles were included in this scoping review, ten including the pediatric population, six including adults and one article including both children and adults with AMC. The most commonly used outcome measures were the PODCI in the pediatric studies, and the SF-36 in studies on adults. In the pediatric studies, psychosocial outcomes were often secondary, compared to the studies on adults. Results showed that in both children and adults, psychosocial outcomes are comparable with the levels of the general population. Qualitative studies reflected the affective needs of this population and issues with emotional wellbeing. Factors such as fatigue and pain were associated with poorer psychosocial outcomes in adults with an impact on social relationships, intimacy and family planning. Conclusion Validated outcome measures, qualitative approaches and longitudinal studies are needed to better understand the psychosocial outcomes in AMC over time. Psychosocial support should be part of the multidisciplinary management of AMC throughout the lifespan.
format	article
author	Sarah Cachecho Jill Boruff Trudy Wong Francis Lacombe Noemi Dahan-Oliel
author_facet	Sarah Cachecho Jill Boruff Trudy Wong Francis Lacombe Noemi Dahan-Oliel
author_sort	Sarah Cachecho
title	Psychosocial wellbeing among children and adults with arthrogryposis: a scoping review
title_short	Psychosocial wellbeing among children and adults with arthrogryposis: a scoping review
title_full	Psychosocial wellbeing among children and adults with arthrogryposis: a scoping review
title_fullStr	Psychosocial wellbeing among children and adults with arthrogryposis: a scoping review
title_full_unstemmed	Psychosocial wellbeing among children and adults with arthrogryposis: a scoping review
title_sort	psychosocial wellbeing among children and adults with arthrogryposis: a scoping review
publisher	BMC
publishDate	2021
url	https://doaj.org/article/13e64cd622b64315bc7eeb7a6b390900
work_keys_str_mv	AT sarahcachecho psychosocialwellbeingamongchildrenandadultswitharthrogryposisascopingreview AT jillboruff psychosocialwellbeingamongchildrenandadultswitharthrogryposisascopingreview AT trudywong psychosocialwellbeingamongchildrenandadultswitharthrogryposisascopingreview AT francislacombe psychosocialwellbeingamongchildrenandadultswitharthrogryposisascopingreview AT noemidahanoliel psychosocialwellbeingamongchildrenandadultswitharthrogryposisascopingreview
_version_	1718372059109654528

Psychosocial wellbeing among children and adults with arthrogryposis: a scoping review

Ejemplares similares