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DOI: 10.1055/s-0029-1243622
© Georg Thieme Verlag KG Stuttgart · New York
Development and Validation of a Disease-Specific Quality-of-Life Measure for Children with Achalasia
Publikationsverlauf
received September 07, 2009
accepted after revision October 13, 2009
Publikationsdatum:
22. Januar 2010 (online)

Abstract
Background: Achalasia is an uncommon oesophageal motility disorder occasionally affecting children. Children with achalasia can experience significant morbidity, and quality-of- life (QoL) has never been studied in this population.
Aim: The aim was to develop a disease-specific quality-of-life (DS-QoL) measure for children with achalasia.
Methods: Item response theory methods were used to develop the DS-QoL measure. The construct validity of this measure was assessed by comparing items and domains with the generic PedsQL™ questionnaire. Reliability was assessed using Cronbach's alpha coefficient for internal consistency.
Results: 17 children completed the final DS-QoL measure, which consisted of 20 items in three domains. The completion rate for items was 99%. “Floor and ceiling effects” ranged from 0–19%. Construct validity was good with significant correlation between 2 domains and 2 items on the PedsQL™. Reliability was excellent, with Cronbach's alpha coefficient ranging from 0.78–0.93.
Conclusions: This DS-QoL measure is appropriate for use in children with achalasia and has shown good results in this validation study. Further work in higher numbers is necessary to determine discriminant validity and test-retest reliability.
Key words
oesophageal achalasia - quality-of-life - paediatrics
References
- 1
Ben-Meir A, Urbach DR, Khajanchee YS. et al .
Quality-of-life before and after laparoscopic Heller myotomy for achalasia.
Am J Surg.
2001;
181
((5))
471-474
MissingFormLabel
- 2
Cronbach LJ.
Coefficient alpha and the internal structure of tests.
Psychometrika.
1951;
16
((3))
297-334
MissingFormLabel
- 3
Decker G, Borie F, Bouamrirene D. et al .
Gastrointestinal quality-of-life before and after laparoscopic heller myotomy with
partial posterior fundoplication.
Ann Surg.
2002;
236
((6))
750-758
MissingFormLabel
- 4
Eiser C, Morse R.
Quality-of-life measures in chronic diseases of childhood.
Health Technol Assess.
2001;
5
((4))
1-157
MissingFormLabel
- 5
Erling A.
Methodological considerations in the assessment of health-related quality-of-life
in children.
Acta Paediatr Suppl.
1999;
88
((428))
106-107
MissingFormLabel
- 6
Frankhuisen R, Heijkoop R, van Herwaarden MA. et al .
Validation of a disease-specific quality-of-life questionnaire in a large sample of
Dutch achalasia patients.
Dis Esophagus.
2008;
21
((6))
544-550
MissingFormLabel
- 7
Frankhuisen R, van Herwaarden MA, Heijkoop R. et al .
Persisting symptoms and decreased health-related quality-of-life in a cross-sectional
study of treated achalasia patients.
Aliment Pharmacol Ther.
2007;
26
((6))
899-904
MissingFormLabel
- 8
Lawson ML, Cash TF, Akers R. et al .
A pilot study of the impact of surgical repair on disease-specific quality-of-life
among patients with pectus excavatum.
J Pediatr Surg.
2003;
38
((6))
916-918
MissingFormLabel
- 9
Loonen HJ, Derkx BH, Otley AR.
Measuring health-related quality-of-life of pediatric patients.
J Pediatr Gastroenterol Nutr.
2001;
32
((5))
523-526
MissingFormLabel
- 10
Maity S, Thomas AG.
Quality-of-life in paediatric gastrointestinal and liver disease: a systematic review.
J Pediatr Gastroenterol Nutr.
2007;
44
((5))
540-554
MissingFormLabel
- 11
Meshkinpour H, Haghighat P, Meshkinpour A.
Quality-of-life among patients treated for achalasia.
Dig Dis Sci.
1996;
41
((2))
352-356
MissingFormLabel
- 12
Modi AC, Quittner AL.
Validation of a disease-specific measure of health-related quality-of-life for children
with cystic fibrosis.
J Pediatr Psychol.
2003;
28
((8))
535-545
MissingFormLabel
- 13
Morris-Stiff G, Khan R, Foster ME. et al .
Long-term results of surgery for childhood achalasia.
Ann R Coll Surg Engl.
1997;
79
((6))
432-434
MissingFormLabel
- 14 Nurko S. Other Motor Disorders. In: Walker WA, Durie PR, Hamilton RJ, Walker-Smith JA, Watkins JB, ed.
Paediatric Gastrointestinal Disease . 2nd ed. St. Louis, Missouri: Mosby-Year Book Inc 1996 pp 474-489MissingFormLabel - 15
Otley A, Smith C, Nicholas D. et al .
The IMPACT questionnaire: A valid measure of health-related quality-of-life in pediatric
inflammatory bowel disease.
J Pediatr Gastroenterol Nutr.
2002;
35
((4))
557-563
MissingFormLabel
- 16
Pensabene L, Nurko S.
Approach to the child who has persistent dysphagia after surgical treatment for esophageal
achalasia.
J Pediatr Gastroenterol Nutr.
2008;
47
((1))
92-97
MissingFormLabel
- 17
Ponce M, Ortiz V, Juan M. et al .
Gastroesophageal reflux, quality-of-life, and satisfaction in patients with achalasia
treated with open cardiomyotomy and partial fundoplication.
Am J Surg.
2003;
185
((6))
560-564
MissingFormLabel
- 18
Raftopoulos Y, Landreneau RJ, Hayetian F. et al .
Factors affecting quality-of-life after minimally invasive Heller myotomy for achalasia.
J Gastrointest Surg.
2004;
8
((3))
233-239
MissingFormLabel
- 19
Upton P, Eiser C, Cheung I. et al .
Measurement properties of the UK-English version of the Pediatric Quality-of-life
Inventory 4.0 (PedsQL) generic core scales.
Health Qual Life Outcomes.
2005;
3
22
MissingFormLabel
- 20
Urbach DR, Tomlinson GA, Harnish JL. et al .
A measure of disease-specific health-related quality-of-life for achalasia.
Am J Gastroenterol.
2005;
100
((8))
1668-1676
MissingFormLabel
- 21
Varni JW, Seid M, Kurtin PS.
PedsQL 4.0: reliability and validity of the Pediatric Quality-of-life Inventory version
4.0 generic core scales in healthy and patient populations.
Med Care.
2001;
39
((8))
800-812
MissingFormLabel
- 22
Voskuijl WP, van der Zaag-Loonen HJ, Ketel IJG. et al .
Health-related quality-of-life in disorders of defection: the Defecation Disorders
List.
Arch Dis Child.
2004;
89
1124-1127
MissingFormLabel
- 23
Youssef Y, Richards WO, Sharp K. et al .
Relief of dysphagia after laparoscopic Heller myotomy improves long-term quality-of-life.
J Gastrointest Surg.
2007;
11
((3))
309-313
MissingFormLabel
Correspondence
Matko Marlais
Chelsea and Westminster Hospital
Department of Paediatric Gastroenterology
369 Fulham Road
SW10 9NH London
United Kingdom
Telefon: +442087468628
Fax: +442087468770
eMail: mm1305@ic.ac.uk