Measuring Patient-Reported Health-Related Quality of Life in Velopharyngeal Insufficiency: Reliability and Validity of the Brazilian Portuguese Version of the VELO Instrument
Restricted accessResearch articleFirst published online October, 2019
Measuring Patient-Reported Health-Related Quality of Life in Velopharyngeal Insufficiency: Reliability and Validity of the Brazilian Portuguese Version of the VELO Instrument
To test the Brazilian Portuguese velopharyngeal insufficiency (VPI) Effects on Life Outcome (VELO) instrument for reliability and validity.
Design:
Cross-sectional methodological study.
Setting:
Tertiary craniofacial medical center.
Participants:
Participants with VPI (VPI group, n = 60), with cleft and without VPI (no VPI/cleft group, n = 60), and with no cleft nor VPI (no VPI/no cleft group, n = 60) and their parents (n = 180).
Interventions:
All patients with VPI 8+ years old and their parents completed the Brazilian–Portuguese VELO instrument and other questionnaires (Pediatric Quality of Life Inventory4.0, PedsQL4.0; Pediatric Voice-Related Quality of Life, PVRQOL; and Intelligibility in Context Scale, ICS) at baseline; patients with VPI and their parents completed the VELO instrument again 2 weeks later.
Main Outcome Measures:
The VELO instrument was tested for internal consistency, test–retest reliability, discriminant validity (participants with VPI against participants with no VPI), concurrent validity against other questionnaires, criterion validity against hypernasality severity, and construct validity against nasal air emission and overall velopharyngeal competence (speech construct) and velopharyngeal gap (anatomic construct).
Results:
The VELO had excellent internal consistency (Cronbach α 0.99 for parents and 0.98 for participants with VPI) and test–retest reliability (all intraclass correlation coefficient > 0.87). The VELO discriminated well between VPI group and unaffected groups (all P < .05). The VELO was significantly correlated with the PedsQL4.0, PVRQOL, and ICS (–r > 0.75; P < .001). The VELO met criterion validity, speech construct validity, and anatomic construct validity (r > 0.7; P < .001).
Conclusions:
The Brazilian-Portuguese VELO instrument demonstrated reliability (internal consistency and test–retest) and validity (discriminant, concurrent, criterion, and construct).
BarrLThibeaultSLMuntzHde SerresL. Quality of life in children with velopharyngeal insufficiency. Arch Otolaryngol Head Neck Surg. 2007;133(3):224–229.
2.
BeatonDEBombardierCGuilleminFFerrazMB. Guidelines for the process of cross-cultural adaptation of self-report measures. Spine (Phila Pa 1976). 2000;25(24):3186–3191.
3.
BhuskuteASkirkoJRRothCBayoumiADurbin-JohnsonBTollefsonTT. Association of velopharyngeal insufficiency with quality of life and patient-reported outcomes after speech surgery. JAMA Facial Plast Surg. 2017;19(5):406–412.
4.
BoseleyMECunninghamMJVolkMSHartnickCJ. Validation of the Pediatric Voice-Related Quality-of-Life survey. Arch Otolaryngol Head Neck Surg. 2006;132(7):717–720.
5.
BoseleyMEHartnickCJ. Assessing the outcome of surgery to correct velopharyngeal insufficiency with the pediatric voice outcomes survey. Int J Pediatr Otorhinolaryngol. 2004;68(11):1429–1433.
6.
BruneelLVan LierdeKBettensKCorthalsPVan PoelEDe GrooteEKepplerH. Health-Related Quality of Life in patients with cleft palate: validity and reliability of the VPI Effects on Life Outcomes (VELO) questionnaire translated to Dutch. Int J Pediatr Otorhinolaryngol. 2017;98:91–96.
7.
ChapmanKLBaylisATrost-CardamoneJCorderoKNDixonADobbelsteynCThurmesAWilsonKHarding-BellASweeneyT, et al.The Americleft Speech Project: a training and reliability study. Cleft Palate Craniofac J. 2016;53(1):93–108.
8.
de BlacamCSmithSOrrD. Surgery for velopharyngeal dysfunction: a systematic review of interventions and outcomes. Cleft Palate Craniofac J. 2018;55(3):405–422.
9.
DenadaiRRaposo-AmaralCERaposo-AmaralCA. Buccinator myomucosal flap in cleft palate repair: the SOBRAPAR hospital experience. In: AlonsoNRaposo-AmaralCE, eds. Cleft Lip and Palate Treatment: A Comprehensive Guide. 1st ed. Cham, Switzerland: Springer; 2018a:155–181.
10.
DenadaiRRaposo-AmaralCASabbagAVieiraPRBuzzoCLRaposo-AmaralCE. Tailored posterior pharyngeal fat grafting outcomes in velopharyngeal insufficiency managed according to a simplified algorithm. Ann Plast Surg. 2019. [published online ahead of print] DOI: 10.1097/SAP.0000000000001930
11.
DenadaiRRaposo-AmaralCESabbagARaposo-AmaralCA. Surgical management of velopharyngeal insufficiency: the SOBRAPAR hospital algorithm. In: AlonsoNRaposo-AmaralCE, eds. Cleft Lip and Palate Treatment: A Comprehensive Guide. 1st ed. Cham, Switzerland: Springer; 2018b:194–204.
12.
DenadaiRSabbagARaposo-AmaralCEFilhoJCPNagaeMHRaposo-AmaralCA. Bilateral buccinator myomucosal flap outcomes in nonsyndromic patients with repaired cleft palate and velopharyngeal insufficiency. J Plast Reconstr Aesthet Surg. 2017;70(11):1598–1607.
13.
DenadaiRSabbagAAmaralCERPereira FilhoJCNagaeMHAmaralCAR. Buccinator myomucosal flap for the treatment of velopharyngeal insufficiency in patients with cleft palate and/or lip. Braz J Otorhinolaryngol. 2018c;84(6):697–707.
14.
DerenOAyhanMTuncelAGörgüMAltuntaşAKutlayRErdoğanB. The correction of velopharyngeal insufficiency by Furlow palatoplasty in patients older than 3 years undergoing Veau-Wardill-Kilner palatoplasty: a prospective clinical study. Plast Reconstr Surg. 2005;116(1):85–93.
15.
FloydFJWidamanKF. Factor analysis in the development and refinement of clinical assessment instruments. Psychol Assess. 1995;7(3):286–299.
16.
HenningssonGKuehnDPSellDSweeneyTTrost-CardamoneJEWhitehillTL; Speech Parameters Group. Universal parameters for reporting speech outcomes in individuals with cleft palate. Cleft Palate Craniofac J. 2008;45(1):1–17.
17.
JohnASellDSweeneyTHarding-BellAWilliamsA. The cleft audit protocol for speech-augmented: a validated and reliable measure for auditing cleft speech. Cleft Palate Craniofac J. 2006;43(3):272–288.
18.
KlatchoianDALenCATerreriMTSilvaMItamotoCCiconelliRMVarniJWHilárioMO. Quality of life of children and adolescents from São Paulo: reliability and validity of the Brazilian version of the Pediatric Quality of Life Inventory version 4.0 Generic Core Scales. J Pediatr (Rio J). 2008;84(4):308–315.
19.
KooTKLiMY. A guideline of selecting and reporting intraclass correlation coefficients for reliability research. J Chiropr Med. 2016;15(2):155–163.
20.
KummerAHosseinabadHHRedleEClarkS. Protocols for reporting speech outcomes following palatoplasty or velopharyngeal surgery: a literature review. Plast Reconstr Surg Glob Open. 2019;7(2):e2151.
21.
KummerAW. Speech evaluation for patients with cleft palate. Clin Plast Surg. 2014;41(2):241–251.
22.
LandisJRKochGG. The measurement of observer agreement for categorical data. Biometrics. 1977;33(1):159–174.
23.
LamDJStarrJRPerkinsJALewisCWEblenLEDunlapJSieKC. A comparison of nasendoscopy and multiview videofluoroscopy in assessing velopharyngeal insufficiency. Otolaryngol Head Neck Surg. 2006;134(3):394–402.
24.
LongREWilson-GendersonMGraysonBHFloresRBroderHL. Oral health-related quality of life and self-rated speech in children with existing fistulas in mid-childhood and adolescence. Cleft Palate Craniofac J. 2016;53(6):664–669.
25.
MangilliLDSabbagA. Speech therapy in cleft patients. In: AlonsoNRaposo-AmaralCE, eds. Cleft Lip and Palate Treatment: A Comprehensive Guide. 1st ed. Cham, Switzerland: Springer; 2018:215–223.
26.
McLeodS. Intelligibility in Context Scale: a parent-report screening tool translated into 60 languages. J Clin Pract Speech Lang Pathol. 2015;17(1):7–12.
27.
McLeodSCroweKShahaeianA. Intelligibility in Context Scale: normative and validation data for English-speaking preschoolers. Lang Speech Hear Serv Sch. 2015;46(3):266–276.
28.
McLeodSHarrisonLJMcCormackJ. The Intelligibility in Context Scale: validity and reliability of a subjective rating measure. J Speech Lang Hear Res. 2012;55(2):648–656.
29.
MosseyPALittleJMungerRGDixonMJShawWC. Cleft lip and palate. Lancet. 2009;374(9703):1773–1785.
30.
NaranSFordMLoseeJE. What’s new in cleft palate and velopharyngeal dysfunction management?Plast Reconstr Surg. 2017;139(6):1343e–1355e.
31.
NormanGRStreinerDL. Biostatistics: The Bare Essentials. Hamilton, Ontario, Canada: BC Decker; 2008.
32.
ParkSWOhTSKohKS. Repeat double-opposing z-Plasty for the management of persistent velopharyngeal insufficiency. Ann Plast Surg. 2016;77(6):626–629.
33.
PerkinsJALewisCWGrussJSEblenLESieKC. Furlow palatoplasty for management of velopharyngeal insufficiency: a prospective study of 148 consecutive patients. Plast Reconstr Surg. 2005;116(1):72–80.
34.
ReeveBBWyrwichKWWuAWVelikovaGTerweeCBSnyderCFSchwartzCRevickiDAMoinpourCMMcLeodLD, et al.ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research. Qual Life Res. 2013;22(8):1889–1905.
35.
RibeiroLLPaulaKMBehlauM. Voice-related quality of life in the pediatric population: validation of the Brazilian version of the Pediatric Voice-Related Quality-of Life survey. Codas. 2014;26(1):87–95.
36.
SantillanaRSkirkoJRothCTollefsonTT. Spanish linguistic validation for the Velopharyngeal insufficiency effects on life outcomes. JAMA Facial Plast Surg. 2018;20(4):331–332.
37.
ShawW. Global strategies to reduce the health care burden of craniofacial anomalies: report of WHO meetings on international collaborative research on craniofacial anomalies. Cleft Palate Craniofac J. 2004;41(3):238–243.
38.
SieKCStarrJRBloomDCCunninghamMde SerresLMDrakeAFElluruRGHaddadJJrHartnickCMacarthurC, et al.Multicenter interrater and intrarater reliability in the endoscopic evaluation of velopharyngeal insufficiency. Arch Otolaryngol Head Neck Surg. 2008;134(7):757–763.
39.
SieKCTampakopoulouDASoromJGrussJSEblenLE. Results with Furlow palatoplasty in management of velopharyngeal insufficiency. Plast Reconstr Surg. 2001;108(1):17–25.
40.
SkirkoJRWeaverEMPerkinsJAKinterSEblenLMartinaJSieKC. Change in quality of life with velopharyngeal insufficiency surgery. Otolaryngol Head Neck Surg. 2015;153(5):857–864.
41.
SkirkoJRWeaverEMPerkinsJAKinterSEblenLSieKC. Validity and responsiveness of VELO: a velopharyngeal insufficiency quality of life measure. Otolaryngol Head Neck Surg. 2013;149(2):304–311.
42.
SkirkoJRWeaverEMPerkinsJKinterSSieKC. Modification and evaluation of a velopharyngeal insufficiency quality-of-life instrument. Arch Otolaryngol Head Neck Surg. 2012;138(10):929–935.
43.
SullivanSRMarrinanEMMullikenJB. Pharyngeal flap outcomes in nonsyndromic children with repaired cleft palate and velopharyngeal insufficiency. Plast Reconstr Surg. 2010;125(1):290–298.
44.
TerweeCBBotSDde BoerMRvan der WindtDAKnolDLDekkerJBouterLMde VetHC. Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol. 2007;60(1):34–42.
45.
WermkerKLünenbürgerHJoosUKleinheinzJJungS. Results of speech improvement following simultaneous push-back together with velopharyngeal flap surgery in cleft palate patients. J Craniomaxillofac Surg. 2014;42(5):525–530.
46.
WildDGroveAMartinMEremencoSMcElroySVerjee-LorenzAEriksonP; ISPOR Task Force for Translation and Cultural Adaptation. Principles of good practice for the translation and cultural adaptation process for patient-reported outcomes (PRO) measures: report of the ISPOR task force for translation and cultural adaptation. Value Health. 2005;8(2):94–104.
47.
World Health Organization. Global Strategies to Reduce the Healthcare Burden of Craniofacial Anomalies: Report of WHO Meetings on International Collaborative Research on Craniofacial Anomalies. Geneva, Switzerland: World Health Organization; 2000.
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