Abstract
Improvement of quality of life in neuromuscular disorders is a primary objective, both in management of affected children and in the context of therapeutic trials. Quality of life is a subjective concept and it is crucial to gather information directly from patients. We created the SOLE Questionnaire for NMDs, a new instrument designed to investigate quality of life in children with neuromuscular disorders, and tested it in a study population of 78 patients and in 81 healthy children aged 5 to 13 years. The SOLE Questionnaire, characterized by a visual and neutral approach, was well received, practical, rapid to administer, and able to discriminate between patients and controls. We also confirmed the presence of disagreement about children's quality of life between children and their parents. We suggest that our new approach could help to improve understanding of quality of life in children with neuromuscular disorders.
| Original language | English |
|---|---|
| Pages (from-to) | 167-181 |
| Number of pages | 15 |
| Journal | Journal of Child Neurology |
| Volume | 29 |
| Issue number | 2 |
| DOIs | |
| Publication status | Published - Feb 2014 |
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Keywords
- children
- Duchenne muscular dystrophy
- neuromuscular disorders
- quality of life
- questionnaire
- self-report
ASJC Scopus subject areas
- Clinical Neurology
- Pediatrics, Perinatology, and Child Health
Cite this
A new self-report quality of life questionnaire for children with neuromuscular disorders : Presentation of the instrument, rationale for its development, and some preliminary results. / Orcesi, Simona; Ariaudo, Giada; Mercuri, Eugenio; Beghi, Ettore; Rezzani, Cristiana; Balottin, Umberto.
In: Journal of Child Neurology, Vol. 29, No. 2, 02.2014, p. 167-181.Research output: Contribution to journal › Article
}
TY - JOUR
T1 - A new self-report quality of life questionnaire for children with neuromuscular disorders
T2 - Presentation of the instrument, rationale for its development, and some preliminary results
AU - Orcesi, Simona
AU - Ariaudo, Giada
AU - Mercuri, Eugenio
AU - Beghi, Ettore
AU - Rezzani, Cristiana
AU - Balottin, Umberto
PY - 2014/2
Y1 - 2014/2
N2 - Improvement of quality of life in neuromuscular disorders is a primary objective, both in management of affected children and in the context of therapeutic trials. Quality of life is a subjective concept and it is crucial to gather information directly from patients. We created the SOLE Questionnaire for NMDs, a new instrument designed to investigate quality of life in children with neuromuscular disorders, and tested it in a study population of 78 patients and in 81 healthy children aged 5 to 13 years. The SOLE Questionnaire, characterized by a visual and neutral approach, was well received, practical, rapid to administer, and able to discriminate between patients and controls. We also confirmed the presence of disagreement about children's quality of life between children and their parents. We suggest that our new approach could help to improve understanding of quality of life in children with neuromuscular disorders.
AB - Improvement of quality of life in neuromuscular disorders is a primary objective, both in management of affected children and in the context of therapeutic trials. Quality of life is a subjective concept and it is crucial to gather information directly from patients. We created the SOLE Questionnaire for NMDs, a new instrument designed to investigate quality of life in children with neuromuscular disorders, and tested it in a study population of 78 patients and in 81 healthy children aged 5 to 13 years. The SOLE Questionnaire, characterized by a visual and neutral approach, was well received, practical, rapid to administer, and able to discriminate between patients and controls. We also confirmed the presence of disagreement about children's quality of life between children and their parents. We suggest that our new approach could help to improve understanding of quality of life in children with neuromuscular disorders.
KW - children
KW - Duchenne muscular dystrophy
KW - neuromuscular disorders
KW - quality of life
KW - questionnaire
KW - self-report
UR - http://www.scopus.com/inward/record.url?scp=84892700145&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=84892700145&partnerID=8YFLogxK
U2 - 10.1177/0883073813511859
DO - 10.1177/0883073813511859
M3 - Article
VL - 29
SP - 167
EP - 181
JO - Journal of Child Neurology
JF - Journal of Child Neurology
SN - 0883-0738
IS - 2
ER -