Health‐Related Quality of Life Components in Children With Neonatal Brachial Plexus Palsy: A Qualitative Study

Chang, Kai-Ting; Austin, Amy; Yeaman, Jan; Phillips, Lauren; Kratz, Anna L.; Yang, Lynda J.‐S.; Carlozzi, Noelle E.

doi:10.1016/j.pmrj.2016.08.002

Cited by 19 publications

(16 citation statements)

References 39 publications

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“…Children with NBPP have the perception that limited ROM and reduced strength affect their performance of certain movements in sports or school activities. 3,12,13 In the current study, however, parents were the ones who showed reduced perception in the sports and physical function domain. In Kirjavainen et al, 12 NBPP children (n=79; 71%) had limitations in performing activities such as cycling, cross-country skiing, and swimming.…”

Section: Nbppg Mean±sdmentioning

confidence: 55%

“…10,11 In this domain, lower scores were obtained for tasks that required upper limbs use, as limited ROM affected the functionality of such children. 13 On the parents' perception, NBPPG children have more pain than the unaffected controls. The pain domain was assessed using the CHQ and PODCI, higher perceptions of pain were reported by parents of NBPP children in the CHQ alone.…”

Section: Nbppg Mean±sdmentioning

confidence: 99%

“…5,[9][10][11] This is probably due to functional impairments, pain, psychosocial problems, 5,[9][10][11] and limitation in sports activities. 3,12,13 Personal and environmental factors can influence the QOL of children with NBPP with regard to coping mechanisms to psychological, financial, family, therapeutic, aesthetic, and body image issues. 5 Given the challenges faced by NBPP children, as well as relation between functional deficits of upper limb and their QOL, understanding how NBPP influences the QOL and upper limb function is essential.…”

Section: Introductionmentioning

confidence: 99%

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Quality of Life and Upper Limb Function of Children With Neonatal Brachial Plexus Palsy

Medeiros

Agostinho

Mochizuki

et al. 2020

Rev. paul. pediatr.

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Objective: To compare the upper limb function and quality of life between children with neonatal brachial plexus palsy and controls with unaffected brachial plexus (typical children). Methods: Twenty-four children with neonatal brachial plexus palsy and 24 typical ones were evaluated, both groups with 10±3 years of age. The upper limb function was assessed by the Modified Mallet Scale and the Active Movement Scale, whereas quality of life was analyzed by the Pediatric Outcome Data Collection Instrument and the Child Health Questionnaire. Mann-Whitney U tests investigated the differences between groups in such scales. Results: Children with neonatal brachial plexus palsy presented lower limb function compared to typical children in both scales. These children also presented lower scores for most of the Pediatric Outcome Data Collection Instrument domains, except for comfort/pain. In addition, they had lower scores in the following domains of the Child Health Questionnaire: physical functioning, pain, behavior, mental health, overall health perception, emotional impact on parents, and psychosocial summarized score. Conclusions: Neonatal brachial plexus palsy has a negative influence on upper limb function and quality of life, mainly considering overall health, basic mobility, physical and psychosocial functions, happiness, pain, behavior, mental health, upper limb function, and emotional impact on their parents. Objetivo: Comparar a função do membro superior e a qualidade de vida entre crianças com paralisia obstétrica do plexo braquial e aquelas sem paralisia do plexo braquial (crianças usuais). Métodos: Foram avaliadas 24 crianças com paralisia obstétrica do plexo braquial e 24 crianças usuais, ambos os grupos com 10±3 anos. A função do membro superior foi avaliada pela Escala Mallet Modificada e Active Movement Scale, já a qualidade de vida foi analisada por meio das escalas Pediatric Outcome Data Collection Instrument e Child Health Questionnaire. Foram realizados testes U de Mann-Whitney para investigar diferenças entre os grupos nas escalas. Resultados: Crianças com paralisia obstétrica do plexo braquial apresentaram menor função do membro superior quando comparadas às crianças usuais, em ambas as escalas utilizadas. Essas crianças também apresentaram menores pontuações para a maioria dos domínios do Pediatric Outcome Data Collection, exceto para conforto/dor. Além disso, apresentaram escores inferiores nos seguintes domínios do Child Health Questionnaire: função física, dor, comportamento, saúde mental, percepção da saúde em geral, impacto emocional nos pais e pontuação psicossocial resumida. Conclusões: A paralisia obstétrica do plexo braquial tem uma influência negativa na função do membro superior e na qualidade de vida, principalmente em relação à saúde geral, mobilidade básica, funções física e psicossocial, felicidade, dor, comportamento, saúde mental, funcionalidade do membro superior e impacto emocional nos pais. Palavras-chave: Criança; Qualidade de vida; Extremidade superior; Movimento; Plexo braqu...

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Section: Nbppg Mean±sdmentioning

confidence: 55%

Section: Nbppg Mean±sdmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Quality of Life and Upper Limb Function of Children With Neonatal Brachial Plexus Palsy

Medeiros

Agostinho

Mochizuki

et al. 2020

Rev. paul. pediatr.

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“…Topics that have emerged from qualitative analyses include body image and self-esteem (Chang et al, 2016), as well as emotional impact, thoughts about future, and coping with social situations (Skjerning, Mahon, Husby, & DunnGalvin, 2014). If we assume that the focus groups were able to collect the full range of experiences of short stature in each country, then differences in the number of statement categories could be a sign of differences in experience between countries.…”

Section: Discussionmentioning

confidence: 99%

“…Socioemotional issues play an important role in children with chronic conditions, as suggested by studies that used focus groups to assess HrQoL in children with chronic conditions like celiac disease or neonatal brachial plexus palsy (Chang et al, ). Topics that have emerged from qualitative analyses include body image and self‐esteem (Chang et al, ), as well as emotional impact, thoughts about future, and coping with social situations (Skjerning, Mahon, Husby, & DunnGalvin, ). If we assume that the focus groups were able to collect the full range of experiences of short stature in each country, then differences in the number of statement categories could be a sign of differences in experience between countries.…”

Section: Methodsmentioning

confidence: 99%

Experiencing health‐related quality of life in paediatric short stature – a cross‐cultural analysis of statements from patients and parents

Sommer

Bullinger

Chaplin

et al. 2017

Clin Psychology and Psychoth

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HDQLIFE and Neuro‐QoL Physical Function Measures: Responsiveness in Persons with Huntington's Disease

et al. 2019

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A total of 347 participants completed baseline and at least 1 follow-up (12-month and 24-month) measure (HDQLIFE Chorea, HDQLIFE Swallowing Difficulties, HDQLIFE Speech Difficulties, Neuro-QoL Upper Extremity Function, and/or Neuro-QoL Lower Extremity Function). Of the participants that completed the baseline assessment, 338 (90.9%) completed the 12-month assessment, and 293 (78.8%) completed the 24-month assessment. Standardized response means and general linear models evaluated whether the physical function measures were responsive to self-reported and clinician-rated change over time.Results: Small to moderate effect sizes for the standardized response means supported 12-month and 24-month responsiveness of the HDQLIFE and Neuro-QoL measures for those with either self-reported or clinician-rated declines in function. General linear models supported 12-month and 24-month responsiveness for all HRQOL measures relative to self-reported declines in health, but generally only 24-month responsiveness was supported relative to clinician-rated declines in function. Conclusions:Longitudinal analyses indicate that the HDQLIFE and the Neuro-QoL physical function measures are sensitive to change over time in individuals with HD. Thus, these scales exhibit evidence of responsiveness and may be useful outcome measures in future clinical trials.

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Health‐Related Quality of Life Components in Children With Neonatal Brachial Plexus Palsy: A Qualitative Study

Abstract: Not applicable.

Cited by 19 publications

References 39 publications

Quality of Life and Upper Limb Function of Children With Neonatal Brachial Plexus Palsy

Quality of Life and Upper Limb Function of Children With Neonatal Brachial Plexus Palsy

Experiencing health‐related quality of life in paediatric short stature – a cross‐cultural analysis of statements from patients and parents

HDQLIFE and Neuro‐QoL Physical Function Measures: Responsiveness in Persons with Huntington's Disease

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