Is functional dependence of Duchenne muscular dystrophy patients determinant of the quality of life and burden of their caregivers?

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Abstract

ObjectiveThe relationship between functional dependence and quality of life (QOL) in Duchenne muscular dystrophy (DMD) patients and burden and QOL in caregivers is not clear. This study investigated possible relationships between functional dependence/QOL of DMD patients and QOL/burden of caregivers.MethodThis study included 35 boys (6-17 years) and respective caregivers (above 21 years). Caregivers answered to World Health Organization Quality of Life and Zarit Burden Interview questionnaires. Patients were assessed with the Motor Function Measure and the Autoquestionnaire Qualité de vie Enfant Imagé. Spearman correlations and linear regressions were run to investigate relationships between the variables.ResultsThe occurrence of lower QOL and higher burden among the caregivers of patients with Duchenne muscular dystrophy was evidenced. The functional dependence of patients was not considered a determinant factor. Higher caregivers’ burden was related to lower caregivers’ QOL and to higher patients’ ages.

Translated abstract

ObjetivoA relação entre qualidade de vida e função motora de pacientes com distrofia muscular de Duchenne (DMD) e sobrecarga e qualidade de vida (QV) dos cuidadores não está clara na literatura. Esse estudo investigou possíveis relações entre dependência funcional/QV de pacientes e sobrecarga/QV dos cuidadores em 35 meninos (6-17 anos) com DMD e respectivos cuidadores (acima de 21 anos).MétodoCada cuidador respondeu ao questionário de QV da Organização Mundial de Saúde e de sobrecarga de Zarit e o paciente foi avaliado com a medida de função motora e o Autoquestionnaire Qualité de vie Enfant Imagé. Correlações de Spearman e regressões lineares investigaram possíveis relações entre as variáveis.ResultadosA ocorrência de menor QV e maior sobrecarga entre cuidadores foi evidenciada, enquanto a dependência funcional dos pacientes não foi considerada fator determinante.ConclusãoCuidadores com maior sobrecarga apresentaram menor QV relacionada à maior idade dos pacientes.

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Evidence-based path to newborn screening for Duchenne muscular dystrophy.

Jerry R Mendell, Chris Shilling, Nancy D Leslie … (2012)

Creatine kinase (CK) levels are increased on dried blood spots in newborns related to the birthing process. As a marker for newborn screening, CK in Duchenne muscular dystrophy (DMD) results in false-positive testing. In this report, we introduce a 2-tier system using the dried blood spot to first assess CK with follow-up DMD gene testing. A fluorometric assay based upon the enzymatic transphosphorylation of adenosine diphosphate to adenosine triphosphate was used to measure CK activity. Preliminary studies established a population-based range of CK in newborns using 30,547 deidentified anonymous dried blood spot samples. Mutation analysis used genomic DNA extracted from the dried blood spot followed by whole genome amplification with assessment of single-/multiexon deletions/duplications in the DMD gene using multiplex ligation-dependent probe amplification. DMD gene mutations (all exonic deletions) were found in 6 of 37,649 newborn male subjects, all of whom had CK levels>2,000U/l. In 3 newborns with CK>2,000U/l in whom DMD gene abnormalities were not found, we identified limb-girdle muscular dystrophy gene mutations affecting DYSF, SGCB, and FKRP. A 2-tier system of analysis for newborn screening for DMD has been established. This path for newborn screening fits our health care system, minimizes false-positive testing, and uses predetermined levels of CK on dried blood spots to predict DMD gene mutations. Copyright © 2012 American Neurological Association.

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The Zarit Burden Interview: a new short version and screening version.

M Bedard, D W Molloy, L Squire … (2001)

The purpose of the study was to develop a short and a screening version of the Zarit Burden Interview (ZBI) that would be suitable across diagnostic groups of cognitively impaired older adults, and that could be used for cross-sectional, longitudinal, and intervention studies. We used data from 413 caregivers of cognitively impaired older adults referred to a memory clinic. We collected information on caregiver burden with the 22-item ZBI, and information about dependence in activities of daily living (ADLs) and the frequency of problem behaviors among care recipients. We used factor analysis and item-total correlations to reduce the number of items while taking into consideration diagnosis and change scores. We produced a 12-item version (short) and a 4-item version (screening) of the ZBI. Correlations between the short and the full version ranged from 0.92 to 0.97, and from 0.83 to 0.93 for the screening version. Correlations between the three versions and ADL and problem behaviors were similar. We further investigated the behavior of the short version with a two-way analysis of variance and found that it produced identical results to the full version. The short and screening versions of the ZBI produced results comparable to those of the full version. Reducing the number of items did not affect the properties of the ZBI, and it may lead to easier administration of the instrument.

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Brazilian version of the Burden Interview scale for the assessment of burden of care in carers of people with mental illnesses

Marcia Scazufca (2002)

INTRODUCTION: Burden on informal carers of people with mental or physical illnesses has been studied for a long time. Several standardized instruments for the assessment of carer's burden have been developed. The Burden Interview is one of the most frequently used instruments. The aim of the present study is to examine the internal consistency and validity of the Brazilian version of the Burden Interview, designed to examine the burden in carers of individuals with mental illnesses. METHODS: Carers of patients with a diagnosis of depression, aged 60 or over, were assessed for burden (Burden Interview), emotional distress (SRQ-20) and their perception of patients' behavioral and mood disturbances (Behavioral and Mood Disturbance Scale - BMD). Socio-demographic information of patients and carers was collected with a standardized form. The reliability of the Burden Interview was assessed through its internal consistency. Construct validity was assessed through the exam of the associations of carers' burden with their perception of patients' behavioral and mood disturbances, and the carers' burden with carers' distress. RESULTS: Eighty-two carers of elderly patients with depression were included, being forty-eight (58,5%) women. The internal consistency was good, with a Cronbach's alpha of 0.87. The associations between total scores of the Burden Interview and total scores of the SRQ-20 (r=0.37, p=0.001), and between total scores of the Burden Interview with total scores of BMD (r=0.54, p=0.001) were strong, and similar to other studies that examined those associations, indicating a good construct validity of the Brazilian version of the Burden Interview. DISCUSSION: The Brazilian version of the Burden Interview is a standardized and valid instrument that can be used in the study of the impact of mental and physical illnesses on informal carers.

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Author and article information

Contributors

Maria Clara Drummond Soares de Moura: Role: ND

Hanna Camila Wutzki: Role: ND

Mariana Callil Voos: Role: ND

Maria Bernadete Dutra Resende: Role: ND

Umbertina Conti Reed: Role: ND

Renata Hydee Hasue: Role: ND

Journal

Journal ID (publisher): anp

Title: Arquivos de Neuro-Psiquiatria

Abbreviated Title: Arq. Neuro-Psiquiatr.

Publisher: Academia Brasileira de Neurologia - ABNEURO (São Paulo )

ISSN: 1678-4227

Publication date (Print): January 2015

Volume: 73

Issue: 1

Pages: 52-57

Affiliations

[1 ] Universidade de São Paulo Brazil

[2 ] Universidade de São Paulo Brazil

[3 ] Universidade de São Paulo Brazil

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Publisher ID: S0004-282X2015000100052

DOI: 10.1590/0004-282X20140194

PubMed ID: 25608128

SO-VID: bdceb96c-131b-4f9c-b575-d44416c29ff6

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http://creativecommons.org/licenses/by/4.0/

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Self URI (journal page): http://www.scielo.br/scielo.php?script=sci_serial&pid=0004-282X&lng=en

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Most cited references 34

Evidence-based path to newborn screening for Duchenne muscular dystrophy.

The Zarit Burden Interview: a new short version and screening version.

Brazilian version of the Burden Interview scale for the assessment of burden of care in carers of people with mental illnesses

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