Development and Initial Validation of the Assessment of Caregiver Experience With Neuromuscular Disease

Matsumoto, Hiroko; Clayton-Krasinski, Debora A.; Klinge, Stephen A.; Gómez, Jaime A.; Booker, Whitney A.; Hyman, Joshua E.; Roye, David P.; Vitale, Michael G.

doi:10.1097/bpo.0b013e31820fc522

Cited by 29 publications

(36 citation statements)

References 38 publications

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“…A dichotomous variable was created to classify the children into two groups: those with moderate limitations in motor function (levels I-III) and those with severe limitations (levels IV-V). The GMFCS has proven to be a valid, reliable and stable classification system over time and in multiple studies (Gillick & Koppes 2010;Matsumoto et al 2011).…”

Section: Gross Motor Function Classification System (Gmfcs)mentioning

confidence: 99%

Factors predicting distress among parents/caregivers of children with neurological disease and home enteral nutrition

Pedrón‐Giner

Calderón

Martínez‐Costa

et al. 2013

Child

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Background & aims. Caregivers of children with chronic diseases included in a home enteral nutrition (HEN) program are at risk of experiencing a feeling of burden, high level of anxiety and psychological distress. The aims of this study were: Firstly, to examine the prevalence of symptoms of anxiety-depression in caregivers of children with neurological diseases requiring HEN by gastrostomy tube (GT); secondly, to compare the characteristics of caregivers with high or low risk of exhibiting symptoms of anxiety-depression; thirdly, to investigate possible associations to child disease severity and nutrition support mode. Methods. A cross-sectional observational study was performed in 58 caregivers of children (31 boys, aged 0.3-18 years) with neurological diseases and GT feeding. The characteristics of caregivers with high or low risk of presenting symptoms of anxiety-depression were compared regarding the following variables: socio-demographic characteristics, the primary caregiver's intrapsychic factors, anthropometric parameters of the child, length of HEN, type of nutrients delivered by GT and infusion regime. Results. All primary caregivers were mothers. Fifty-three percent of them showed high risk of exhibiting symptoms of anxiety-depression. Mothers with high or low risk of presenting symptoms of anxiety-depression were comparable in age and family socioeconomic status. They were also similar in terms of age, anthropometric conditions, and length of HEN in their children. No differences were found between the two groups of mothers according to the level of the child's motor function impairment, type of nutrients delivered by GT and infusion regime. Higher levels of psychological distress and perception of burden overload were found in mothers with high risk of exhibiting symptoms of anxiety-depression. Conclusions. This study found a high prevalence of symptoms of anxiety-depression, perception of burden overload and psychological distress in caregivers of children with HEN. Thus, greater practical and emotional support is required for these families.

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Section: Gross Motor Function Classification System (Gmfcs)mentioning

confidence: 99%

Factors predicting distress among parents/caregivers of children with neurological disease and home enteral nutrition

Pedrón‐Giner

Calderón

Martínez‐Costa

et al. 2013

Child

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“…The PEDI‐CAT is a unique, caregiver‐reported functional performance measure that has the potential to capture information about typical functional performance in the SMA population . It may offer several advantages over other person‐reported measures that are utilized currently in the pediatric neuromuscular field . Potential advantages include a larger item bank covering a wider range of ages and abilities, CAT‐based technology developed using IRT methods with standard and scaled scores, brief administration time, assistive device items, and individual item illustrations.…”

Section: Discussionmentioning

confidence: 99%

Rasch analysis of the Pediatric Evaluation of Disability Inventory–computer adaptive test (PEDI‐CAT) item bank for children and young adults with spinal muscular atrophy

et al. 2016

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“…Responses to the expectation question range from never (1) to always (5), and responses to the satisfaction question range from extremely dissatisfied (1) to extremely satisfied (6). 19 …”

Section: Methodsmentioning

confidence: 99%

“…16 The CPCHILD has been used in previous research and has demonstrated responsiveness to change after hip and spine surgery. 17,18 ACEND is a psychometrically valid disease-specific instrument 19 used to assess the impact experienced by caregivers of children severely affected by neuromuscular disorders. It contains 41 impact items divided into two domains and seven sub-domains.…”

Section: Methodsmentioning

confidence: 99%

Differences in health‐related quality of life and caregiver burden after hip and spine surgery in non‐ambulatory children with severe cerebral palsy

DiFazio

Vessey

Zurakowski

et al. 2015

Develop Med Child Neuro

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Aim The aim of this study was to evaluate changes in caregivers' perceptions of health‐related quality of life (HRQOL) and caregiver impact in children with severe, non‐ambulatory cerebral palsy after orthopedic surgery to correct hip or spine deformities. Method A prospective longitudinal cohort study (n=44) design was used to measure changes before and after surgery. Caregivers completed the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) and the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND). Data collection was between February 2011 and February 2014. Caregivers were included if their child was 3 to 25 years old, had cerebral palsy in Gross Motor Function Classification System levels IV and V, and was scheduled for orthopedic surgery. Analysis of variance with repeated measures was used to assess changes before and at four time points after surgery. Results Forty‐four caregivers participated. Caregivers' perceptions of their child's HRQOL demonstrated an improvement from baseline to 12 months (p<0.001). Patients who had spine surgery demonstrated a steady improvement over time, whereas patients who had hip surgery had a decrease at 6 weeks followed by steady improvement. Improvements were noted in five of six of the CPCHILD domains, with no changes in the quality of life domain. No changes were noted in any of the ACEND domains. Interpretation Caregivers report an improvement in a variety of domains of HRQOL 1 year after orthopedic surgery.

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Development and Initial Validation of the Assessment of Caregiver Experience With Neuromuscular Disease

Cited by 29 publications

References 38 publications

Factors predicting distress among parents/caregivers of children with neurological disease and home enteral nutrition

Factors predicting distress among parents/caregivers of children with neurological disease and home enteral nutrition

Rasch analysis of the Pediatric Evaluation of Disability Inventory–computer adaptive test (PEDI‐CAT) item bank for children and young adults with spinal muscular atrophy

Differences in health‐related quality of life and caregiver burden after hip and spine surgery in non‐ambulatory children with severe cerebral palsy

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