Skip to main content
Mijn bibliotheek
Shop
Nieuws Boeken Tijdschriften Toetsvragen Web-tv Video Audio
Tips voor Mijn BSL
Inloggen

Welkom bij Scalda & Bohn Stafleu van Loghum

Scalda heeft ervoor gezorgd dat je Mijn BSL eenvoudig en snel kunt raadplegen.Je kunt de producten hieronder links aanschaffen en rechts inloggen.

» Andere revante producten voor Scalda studenten en medewerkers.

Registreer

Schaf de BSL Academy aan: 

BSL Academy mbo AG

Eenmaal aangeschaft kun je thuis, of waar ook ter wereld toegang krijgen tot Mijn BSL.

Heb je een vraag, neem dan contact op met Jan van der Velden.

Login

Als u al geregistreerd bent, hoeft u alleen maar in te loggen om onbeperkt toegang te krijgen tot Mijn BSL.

Inloggen
Top
Quality of Life Research
Gepubliceerd in:

12-04-2015

QUAlity of Life Assessment in Spina bifida for Adults (QUALAS-A): development and international validation of a novel health-related quality of life instrument

Auteurs: Konrad M. Szymanski, Rosalia Misseri, Benjamin Whittam, Sonia-Maria Raposo, Shelly J. King, Martin Kaefer, Richard C. Rink, Mark P. Cain

Gepubliceerd in: Quality of Life Research | Uitgave 10/2015

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail
    Link delen
publish
Publiceer nu

Abstract

Purpose

Health-related quality of life (HRQOL) is important in spina bifida (SB) management. No clinically useful, comprehensive instrument incorporating bladder/bowel domains exists. We aimed to develop and validate a self-reported QUAlity of Life Assessment in Spina bifida for Adults (QUALAS-A).

Methods

We drafted the 53-question pilot instrument using a comprehensive item generation/refinement process. It was administered to an international convenience sample of adults with SB and controls recruited online via social media and in person at outpatient SB clinics (January 2013–September 2014). Final questions were determined by: clinical relevance, high factor loadings and domain psychometrics in an Internal Validation Sample randomly selected from United States participants (n = 250). External validity was evaluated in United States and International External Validation Samples (n = 165 and n = 117, respectively). Adults with SB completed the validated general WHOQOL-BREF and International Consultation on Incontinence Questionnaire (ICIQ).

Results

Mean age of 532 participants was 32 years (32.7 % males, 85.0 % Caucasian), similar to 116 controls (p ≥ 0.08). There were 474 online and 58 clinical participants (61.1 % eligible). Face validity and content validity of the 3-domain, 15-question QUALAS-A were established by patients, families and experts. Internal consistency and test–retest reliability were high for all domains (Cronbach’s alpha ≥ 0.70, ICC ≥ 0.77). Correlations between QUALAS-A and WHOQOL-BREF were low (r ≤ 0.60), except for high correlations with Health and Relationships domain (0.63 ≤ r ≤ 0.71). Bladder and Bowel domain had a high correlation with ICIQ (r = −0.70). QUALAS-A scores were lower among adults with SB than without (p < 0.0001). QUALAS-A had good statistical properties in both External Validation Samples (Cronbach’s alpha 0.68–0.77).

Conclusions

QUALAS-A is a short, valid HRQOL tool for adults with SB.
vorige artikel Does the COPD assessment test (CATTM) questionnaire produce similar results when self- or interviewer administered?
volgende artikel Nursing home resident quality of life: testing for measurement equivalence across resident, family, and staff perspectives
Bijlagen
Alleen toegankelijk voor geautoriseerde gebruikers
Literatuur
1.
Boulet, S. L., Yang, Q., Mai, C., Kirby, R. S., Collins, J. S., Robbins, J. M., et al. (2008). Trends in the postfortification prevalence of spina bifida and anencephaly in the United States. Birth Defects Research Part A: Clinical and Molecular Teratology, 82(7), 527–532.CrossRef
2.
Vajda, P., Kispal, Z., Lenart, I., Farkas, A., Vastyan, A. M., & Pinter, A. B. (2009). Quality of life: Urinary bladder augmentation or substitution in children. Pediatric Surgery International, 25(2), 195–201.CrossRefPubMed
3.
Salter, M. J. (1992). What are the differences in body image between patients with a conventional stoma compared with those who have had a conventional stoma followed by a continent pouch? Journal of Advanced Nursing, 17(7), 841–848.CrossRefPubMed
4.
Ellsworth, P. I., Webb, H. W., Crump, J. M., Barraza, M. A., Stevens, P. S., & Mesrobian, H. G. (1996). The Malone antegrade colonic enema enhances the quality of life in children undergoing urological incontinence procedures. Journal of Urology, 155(4), 1416–1418.CrossRefPubMed
5.
Sawin, K. J., & Bellin, M. H. (2010). Quality of life in individuals with spina bifida: A research update. Developmental Disabilities Research Reviews, 16(1), 47–59.
6.
Skevington, S. M., Lotfy, M., O’Connell, K. A., & WHOQOL Group. (2004). The World Health Organization’s WHOQOL-BREF quality of life assessment: Psychometric properties and results of the international field trial. A report from the WHOQOL group. Quality of Life Research, 13(2), 299–310.CrossRefPubMed
7.
Ware, J. E., Jr., Kosinski, M., Bjorner, J. B., Turner-Bowker, D. M., Gandek, B., & Maruish, M. E. (2007). User’s manual for the SF-36v2TM Health Survey (2nd ed.). Lincoln: RI QualityMetric Incorporated.
8.
Waters, E., Davis, E., Ronen, G. M., Rosenbaum, P., Livingston, M., & Saigal, S. (2009). Quality of life instruments for children and adolescents with neurodisabilities: How to choose the appropriate instrument. Developmental Medicine and Child Neurology, 51(8), 660–669.CrossRefPubMed
9.
Parekh, A. D., Trusler, L. A., Pietsch, J. B., Byrne, D. W., DeMarco, R. T., Pope, J. C. T., et al. (2006). Prospective, longitudinal evaluation of health related quality of life in the pediatric spina bifida population undergoing reconstructive urological surgery. Journal of Urology, 176(4 Pt 2), 1878–1882.CrossRefPubMed
10.
Lemelle, J. L., Guillemin, F., Aubert, D., Guys, J. M., Lottmann, H., Lortat-Jacob, S., et al. (2006). Quality of life and continence in patients with spina bifida. Quality of Life Research, 15(9), 1481–1492.CrossRefPubMed
11.
Patrick, D. L., Burke, L. B., Powers, J. H., Scott, J. A., Rock, E. P., Dawisha, S., et al. (2007). Patient-reported outcomes to support medical product labeling claims: FDA perspective. Value Health, 10(Suppl 2), S125–137.CrossRefPubMed
12.
Kulkarni, A. V., Rabin, D., & Drake, J. M. (2004). An instrument to measure the health status in children with hydrocephalus: The Hydrocephalus Outcome Questionnaire. Journal of Neurosurgery, 101(2 Suppl), 134–140.PubMed
13.
Parkin, P. C., Kirpalani, H. M., Rosenbaum, P. L., Fehlings, D. L., Van Nie, A., Willan, A. R., et al. (1997). Development of a health-related quality of life instrument for use in children with spina bifida. Quality of Life Research, 6(2), 123–132.CrossRefPubMed
14.
Sawicki, G. S., Lukens-Bull, K., Yin, X., Demars, N., Huang, I. C., Livingood, W., et al. (2011). Measuring the transition readiness of youth with special healthcare needs: Validation of the TRAQ—Transition Readiness Assessment Questionnaire. Journal of Pediatric Psychology, 36(2), 160–171.PubMedCentralCrossRefPubMed
15.
Kincaid, J. P., Fishburne, L. R. P, Jr, Rogers, R. L., & Chissom, B. S. (1975). Derivation of new readability formulas (Automated Readability Index, Fog Count and Flesch Reading Ease Formula) for Navy enlisted personnel. Research Branch Report, 8–75, 1–48.
16.
Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL: Measurement model for the pediatric quality of life inventory. Medical Care, 37(2), 126–139.CrossRefPubMed
17.
Topolski, T. D., Patrick, D. L., Edwards, T. C., Huebner, C. E., Connell, F. A., & Mount, K. K. (2001). Quality of life and health-risk behaviors among adolescents. Journal of Adolescent Health, 29(6), 426–435.CrossRefPubMed
18.
Ravens-Sieberer, U., Auquier, P., Erhart, M., Gosch, A., Rajmil, L., Bruil, J., et al. (2007). The KIDSCREEN-27 quality of life measure for children and adolescents: Psychometric results from a cross-cultural survey in 13 European countries. Quality of Life Research, 16(8), 1347–1356.CrossRefPubMed
19.
Avery, K., Donovan, J., Peters, T. J., Shaw, C., Gotoh, M., & Abrams, P. (2004). ICIQ: A brief and robust measure for evaluating the symptoms and impact of urinary incontinence. Neurourology and Urodynamics, 23(4), 322–330.CrossRefPubMed
20.
Bryant, F. B., & Yarnold, P. R. (1995). Principal components analysis and exploratory and confirmatory factor analysis. In L. G. Grimm & R. R. Yarnold (Eds.), Reading and understanding multivariale statistics (pp. 99–136). Washington, DC: American Psychological Association.
21.
Gorsuch, R. L. (1983). Factor analysis (2nd ed.). Hillsdale, NJ: L. Erlbaum Associates.
22.
Joliffe, I. T., & Morgan, B. J. (1992). Principal component analysis and exploratory factor analysis. Statistical Methods in Medical Research, 1(1), 69–95.CrossRefPubMed
23.
Streiner, D. L. (1994). Figuring out factors: The use and misuse of factor analysis. Canadian Journal of Psychiatry, 39(3), 135–140.
24.
Streiner, D. L., & Norman, G. R. (2003). Health measurement scales: A practical guide to their development and use (3rd ed.). Oxford: Oxford University Press.
25.
Lu, L. N. S. (2007). Reliability analysis: Calculate and compare intra-class correlation coefficients (ICC) in SAS. In Proceedings of NESUG (NorthEast SAS Users Group).
26.
27.
Hays, R. D., Farivar, S. S., & Liu, H. (2005). Approaches and recommendations for estimating minimally important differences for health-related quality of life measures. COPD, 2(1), 63–67.CrossRefPubMed
28.
Norman, G. R., Sloan, J. A., & Wyrwich, K. W. (2004). The truly remarkable universality of half a standard deviation: confirmation through another look. Expert Review of Pharmacoeconomics & Outcomes Research, 4(5), 581–585.CrossRef
29.
Chassany, O., Sagnier, P., Marquis, P., Fullerton, S., Aaronson, N., & Group, F. t. E. R. I. o. Q. o. L. A. (2002). Patient-reported outcomes: The Example of Health-Related Quality of Life—A European Guidance Document for the Improved Integration of Health-Related Quality of Life Assessment in the Drug Regulatory Process. Therapeutic Innovation & Regulatory Science, 36, 209–238. doi:10.​1177/​0092861502036001​27.
30.
Wyrwich, K. W., Bullinger, M., Aaronson, N., Hays, R. D., Patrick, D. L., Symonds, T., & Clinical Significance Consensus Meeting. (2005). Estimating clinically significant differences in quality of life outcomes. Quality of Life Research, 14(2), 285–295.CrossRefPubMed
31.
Bureau, U. S. C. (2011). Population estimates, Vintage 2011: National Tables (Annual Population Estimates).
32.
Sawyer, S. M., & Roberts, K. V. (1999). Sexual and reproductive health in young people with spina bifida. Developmental Medicine and Child Neurology, 41(10), 671–675.CrossRefPubMed
33.
Joyner, B. D., McLorie, G. A., & Khoury, A. E. (1998). Sexuality and reproductive issues in children with myelomeningocele. European Journal of Pediatric Surgery, 8(1), 29–34.CrossRefPubMed
34.
Nanigian, D. K., Nguyen, T., Tanaka, S. T., Cambio, A., DiGrande, A., & Kurzrock, E. A. (2008). Development and validation of the fecal incontinence and constipation quality of life measure in children with spina bifida. Journal of Urology, 180(Suppl 4), 1770–1773; discussion 1773.
35.
Sawin, K. J., Brei, T. J., Buran, C. F., & Fastenau, P. S. (2002). Factors associated with quality of life in adolescents with spina bifida. J Holist Nurs, 20(3), 279–304.CrossRefPubMed
36.
De Civita, M., Regier, D., Alamgir, A. H., Anis, A. H., Fitzgerald, M. J., & Marra, C. A. (2005). Evaluating health-related quality-of-life studies in paediatric populations: Some conceptual, methodological and developmental considerations and recent applications. Pharmacoeconomics, 23(7), 659–685.CrossRefPubMed
37.
Wyrwich, K. W., & Wolinsky, F. D. (2000). Identifying meaningful intra-individual change standards for health-related quality of life measures. Journal of Evaluation in Clinical Practice, 6(1), 39–49.CrossRefPubMed
Metagegevens
Titel
QUAlity of Life Assessment in Spina bifida for Adults (QUALAS-A): development and international validation of a novel health-related quality of life instrument
Auteurs
Konrad M. Szymanski
Rosalia Misseri
Benjamin Whittam
Sonia-Maria Raposo
Shelly J. King
Martin Kaefer
Richard C. Rink
Mark P. Cain
Publicatiedatum
12-04-2015
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 10/2015
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-015-0988-5

Andere artikelen Uitgave 10/2015

Nursing home resident quality of life: testing for measurement equivalence across resident, family, and staff perspectives

Brazilian urban population norms derived from the health-related quality of life SF-6D

A longitudinal assessment of the responsiveness of the ICECAP-A in a randomised controlled trial of a knee pain intervention

  • Open Access

Validation of the PROMIS physical function measures in a diverse US population-based cohort of cancer patients

Living with oropharyngeal dysphagia: effects of bolus modification on health-related quality of life—a systematic review

  • Review

The concept of physical limitations in knee osteoarthritis: as viewed by patients and health professionals