Psychometric Performance of a Condition-Specific Quality-of-Life Instrument for Dutch Children Born with Esophageal Atresia
Abstract
:1. Introduction
2. Methods
2.1. Translation and Cognitive Debriefing
2.2. Field Testing
2.3. Statistical Analysis
3. Results
3.1. Cognitive Debriefing
3.2. Field Test
Study Population
3.3. Item Evaluation
3.4. Internal and External Reliability
3.5. Construct Validity
3.6. Convergent Validity
4. Discussion
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Abbreviations
CAT | computer adaptive testing |
EA | esophageal atresia |
HRQoL | health-related quality of life |
HS | health status |
IRB | institutional review boards |
IRT | item-response theory |
PROMs | patient-reported outcome measures |
QoL | quality of life |
References
- Legrand, C.; Michaud, L.; Salleron, J.; Neut, D.; Sfeir, R.; Thumerelle, C.; Bonnevalle, M.; Turck, K.; Gottrand, F. Long-term outcome of children with oesophageal atresia type III. Arch. Dis. Child. 2012, 97, 808–811. [Google Scholar] [CrossRef] [PubMed]
- IJsselstijn, H.; Gischler, S.J.; Toussaint, L.; Spoel, M.; Zijp, M.H.; Tibboel, D. Growth and development after oesophageal atresia surgery: Need for long-term multidisciplinary follow-up. Paediatr. Respir. Rev. 2016, 19, 34–38. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Vergouwe, F.W.T.; Spoel, M.; van Beelen, N.W.G.; Gischler, S.J.; Wijnen, R.M.H.; van Rosmalen, J.; IJsselstijn, H. Longitudinal evaluation of growth in oesophageal atresia patients up to 12 years. Arch. Dis. Child Fetal Neonatal 2017, 102, F417–F422. [Google Scholar] [CrossRef]
- Toussaint-Duyster, L.C.; van der Cammen-van Zijp, M.H.; Spoel, M.; Lam, M.; Wijnen, R.M.; de Jongste, J.C.; Tibboel, D.; van Rosmalen, J.; IJsselstijn, H. Determinants of exercise capacity in school-aged esophageal atresia patients. Pediatr. Pulmonol. 2017, 52, 1198–1205. [Google Scholar] [CrossRef] [PubMed]
- Van der Cammen-van Zijp, M.H.; Gischler, S.J.; Mazer, P.; van Dijk, M.; Tibboel, D.; Ijsselstijn, H. Motor-function and exercise capacity in children with major anatomical congenital anomalies: An evaluation at 5 years of age. Early Hum. Dev. 2010, 86, 523–528. [Google Scholar] [CrossRef] [Green Version]
- WONCA Classification Committee. An international glossary for general/family practice. Fam. Pract. 1995, 12, 341–369. [Google Scholar] [CrossRef]
- Division of Mental Health Prevention of Substance Abuse, World Health Organization. WHOQOL: Measuring Quality of Life; World Health Organization: Geneva, Switzerland, 1997. [Google Scholar]
- Fayed, N.; de Camargo, O.K.; Kerr, E.; Rosenbaum, P.; Dubey, A.; Bostan, C.; Faulhaber, M.; Raina, P.; Cieza, A. Generic patient-reported outcomes in child health research: A review of conceptual content using World Health Organization definitions. Dev. Med. Child Neurol. 2012, 54, 1085–1095. [Google Scholar] [CrossRef]
- Dellenmark-Blom, M.; Quitmann, J.; Dingemann, C. Health-Related Quality of Life in Patients after Repair of Esophageal Atresia: A Review of Current Literature. Eur. J. Pediatr. Surg. 2020, 30, 239–250. [Google Scholar] [CrossRef]
- Gallo, G.; van Tuyll van Serooskerken, E.S.; Tytgat, S.; van der Zee, D.C.; Keyzer-Dekker, C.M.G.; Zwaveling, S.; Hulscher, J.B.F.; Groen, H.; Lindeboom, M.Y.A. Quality of life after esophageal replacement in children. J. Pediatr. Surg. 2021, 56, 239–244. [Google Scholar] [CrossRef]
- Mikkelsen, A.; Boye, B.; Diseth, T.H.; Malt, U.; Morkrid, L.; Ijsselstijn, H.; Emblem, R. Traumatic stress, mental health and quality of life in adolescents with esophageal atresia. J. Pediatr. Surg. 2022, 57, 1423–1431. [Google Scholar] [CrossRef]
- Ten Kate, C.A.; Rietman, A.B.; van de Wijngaert, Y.; van Gils-Frijters, A.; Gischler, S.J.; Keyzer-Dekker, C.M.G.; Wijnen, R.M.H.; Ijsselstijn, H. Longitudinal Health Status and Quality of Life after Esophageal Atresia Repair. J. Pediatr. Gastroenterol. Nutr. 2021, 73, 695–702. [Google Scholar] [CrossRef] [PubMed]
- Wiebe, S.; Guyatt, G.; Weaver, B.; Matijevic, S.; Sidwell, C. Comparative responsiveness of generic and specific quality-of-life instruments. J. Clin. Epidemiol. 2003, 56, 52–60. [Google Scholar] [CrossRef]
- Dellenmark-Blom, M.; Dingemann, J.; Witt, S.; Quitmann, J.H.; Jonsson, L.; Gatzinsky, V.; Chaplin, J.E.; Bullinger, M.; Flieder, S.; Ure, B.M.; et al. The Esophageal-Atresia-Quality-of-life Questionnaires: Feasibility, Validity and Reliability in Sweden and Germany. J. Pediatr. Gastroenterol. Nutr. 2018, 67, 469–477. [Google Scholar] [CrossRef] [PubMed]
- Dellenmark-Blom, M.; Abrahamsson, K.; Quitmann, J.H.; Sommer, R.; Witt, S.; Dingemann, J.; Flieder, S.; Jonsson, L.; Gatzinsky, V.; Bullinger, M.; et al. Development and pilot-testing of a condition-specific instrument to assess the quality-of-life in children and adolescents born with esophageal atresia. Dis. Esophagus 2017, 30, 1–9. [Google Scholar] [CrossRef]
- Dellenmark-Blom, M.; Chaplin, J.E.; Gatzinsky, V.; Jonsson, L.; Wigert, H.; Apell, J.; Sillen, U.; Abrahamsson, K. Health-related quality of life experiences among children and adolescents born with esophageal atresia: Development of a condition-specific questionnaire for pediatric patients. J. Pediatr. Surg. 2016, 51, 563–569. [Google Scholar] [CrossRef]
- Soyer, T.; Arslan, U.E.; Ulukaya Durakbasa, C.; Aydoner, S.; Boybeyi-Turer, O.; Quitmann, J.H.; Dingemann, J.; Dellenmark-Blom, M. Feasibility, Reliability, and Validity of the Turkish Version of the Esophageal-Atresia-Quality-of-Life Questionnaires to Assess Condition-Specific Quality of Life in Children and Adolescents Born with Esophageal Atresia. Turk. J. Gastroenterol. 2021, 32, 640–650. [Google Scholar] [CrossRef]
- Rozensztrauch, A.; Smigiel, R.; Patkowski, D.; Gerus, S.; Klaniewska, M.; Quitmann, J.H.; Dellenmark-Blom, M. Reliability and Validity of the Polish Version of the Esophageal-Atresia-Quality-of-Life Questionnaires to Assess Condition-Specific Quality of Life in Children and Adolescents Born with Esophageal Atresia. Int. J. Environ. Res. Public Health 2022, 19, 8047. [Google Scholar] [CrossRef]
- Petersson, C.; Huus, K.; Akesson, K.; Enskar, K. Children’s experiences about a structured assessment of health-related quality of life during a patient encounter. Child Care Health Dev. 2016, 42, 424–432. [Google Scholar] [CrossRef]
- Santana, M.J.; Feeny, D. Framework to assess the effects of using patient-reported outcome measures in chronic care management. Qual. Life Res. 2014, 23, 1505–1513. [Google Scholar] [CrossRef]
- Zicht op Zeldzaam. Nederlandse Kwaliteitsstandaard Oesofagusatresie. 2021. Available online: https://zichtopzeldzaam.nl/documenten/oesofagusatresie-kwaliteitsstandaard/ (accessed on 2 July 2022).
- Mokkink, L.B.; Prinsen, C.A.C.; Patrick, D.L.; Alonso, J.; Bouter, L.M.; de Vet, H.C.W.; Terwee, C.B. COSMIN Study Design Checklist for Patient-Reported Outcome Measurement Instruments. 2019. Available online: https://www.cosmin.nl/wp-content/uploads/COSMIN-study-designing-checklist_final.pdf (accessed on 2 July 2022).
- Wild, D.; Grove, A.; Martin, M.; Eremenco, S.; McElroy, S.; Verjee-Lorenz, A.; Erikson, P.; Translation, I.T.F.f.; Cultural, A. 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, 94–104. [Google Scholar] [CrossRef]
- DeMuro, C.J.; Lewis, S.A.; DiBenedetti, D.B.; Price, M.A.; Fehnel, S.E. Successful implementation of cognitive interviews in special populations. Expert Rev. Pharm. Outcomes Res. 2012, 12, 181–187. [Google Scholar] [CrossRef] [PubMed]
- Varni, J.W.; Seid, M.; Kurtin, P.S. 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, 800–812. [Google Scholar] [CrossRef] [PubMed]
- UNESCO Institute of Statistics. International Standard Classification of Education (ISCED). 2011. Available online: http://uis.unesco.org/en/topic/international-standard-classification-education-isced (accessed on 2 July 2022).
- Gross, R.E. The Surgery of Infancy and Childhood: Its Principles and Techniques; W.B. Saunders Co.: Philadelphia, PA, USA, 1953. [Google Scholar]
- Solomon, B.D.; Baker, L.A.; Bear, K.A.; Cunningham, B.K.; Giampietro, P.F.; Hadigan, C.; Hadley, D.W.; Harrison, S.; Levitt, M.A.; Niforatos, N.; et al. An approach to the identification of anomalies and etiologies in neonates with identified or suspected VACTERL (vertebral defects, anal atresia, tracheo-esophageal fistula with esophageal atresia, cardiac anomalies, renal anomalies, and limb anomalies) association. J. Pediatr. 2014, 164, 451–457.e451. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Perined (Hoftiezer) Geboortegewichtcurven. Available online: https://www.perined.nl/producten/geboortegewichtcurven (accessed on 2 July 2022).
- Centers for Disease Control and Prevention. Surgical Site Infection (SSI). 2021. Available online: https://www.cdc.gov/hai/ssi.ssi.html (accessed on 2 July 2022).
- Simeoni, M.C.; Schmidt, S.; Muehlan, H.; Debensason, D.; Bullinger, M.; Group, D. Field testing of a European quality of life instrument for children and adolescents with chronic conditions: The 37-item DISABKIDS Chronic Generic Module. Qual. Life Res. 2007, 16, 881–893. [Google Scholar] [CrossRef]
- Terwee, C.B.; Bot, S.D.; de Boer, M.R.; van der Windt, D.A.; Knol, D.L.; Dekker, J.; Bouter, L.M.; de Vet, H.C. Quality criteria were proposed for measurement properties of health status questionnaires. J. Clin. Epidemiol. 2007, 60, 34–42. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Koo, T.K.; Li, M.Y. A Guideline of Selecting and Reporting Intraclass Correlation Coefficients for Reliability Research. J. Chiropr. Med. 2016, 15, 155–163. [Google Scholar] [CrossRef] [Green Version]
- Rosenthal, R. Meta-Analytic Procedures for Social Research, 2nd ed.; Sage: Newsbury Park, CA, USA, 1991. [Google Scholar]
- Hijkoop, A.; ten Kate, C.A.; Madderom, M.J.; IJsselstijn, H.; Reuser, J.J.; Koopman, H.; Van Rosmalen, J.; Rietman, A.B. Sex differences in children’s health status as measured by the Pediatric Quality of Life Inventory (PedsQL)™: Cross-sectional findings from a large school-based sample in the Netherlands. BMC Pediatr. 2021, 21, 580. [Google Scholar] [CrossRef]
- Centraal Bureau voor de Statistiek. Regionale Kerncijfers Nederland. 2021. Available online: https://opendata.cbs.nl/statline/#/CBS/nl/dataset/70072ned/table?ts=1623317023929 (accessed on 2 July 2022).
- Centraal Bureau voor de Statistiek. Bevolking; Onderwijsniveau; Geslacht, Leeftijd en Migratieachtergrond. Available online: https://opendata.cbs.nl/statline/#/CBS/nl/dataset/82275NED/table?ts=1623317944218 (accessed on 2 July 2022).
- Engstrom, I.; Bjornestam, B.; Finkel, Y. Psychological distress associated with home parenteral nutrition in Swedish children, adolescents, and their parents: Preliminary results. J. Pediatr. Gastroenterol. Nutr. 2003, 37, 246–250. [Google Scholar] [CrossRef]
- Rijksoverheid. Coronavirus COVID-19. 2021. Available online: https://www.rijksoverheid.nl/onderwerpen/coronavirus-covid-19 (accessed on 2 July 2022).
- Nobari, H.; Fashi, M.; Eskandari, A.; Villafaina, S.; Murillo-Garcia, A.; Perez-Gomez, J. Effect of COVID-19 on Health-Related Quality of Life in Adolescents and Children: A Systematic Review. Int. J. Environ. Res. Public Health 2021, 18, 4563. [Google Scholar] [CrossRef]
- Raat, H.; Landgraf, J.M.; Bonsel, G.J.; Gemke, R.J.; Essink-Bot, M.L. Reliability and validity of the child health questionnaire-child form (CHQ-CF87) in a Dutch adolescent population. Qual. Life Res. 2002, 11, 575–581. [Google Scholar] [CrossRef]
- Tripathy, S.; Myatra, S.N. Are the instruments for quality of life assessment comparable between cultures? No. Intensive Care Med. 2020, 46, 1746–1748. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Hoorens, V. Self-enhancement and Superiority Biases in Social Comparison. Eur. Rev. Soc. Psychol. 1993, 4, 113–139. [Google Scholar] [CrossRef]
- Scott, N.W.; Fayers, P.M.; Aaronson, N.K.; Bottomley, A.; de Graeff, A.; Groenvold, M.; Gundy, C.; Koller, M.; Petersen, M.A.; Sprangers, M.A.; et al. Differential item functioning (DIF) analyses of health-related quality of life instruments using logistic regression. Health Qual. Life Outcomes 2010, 8, 81. [Google Scholar] [CrossRef] [Green Version]
- Benjamin, K.; Vernon, M.K.; Patrick, D.L.; Perfetto, E.; Nestler-Parr, S.; Burke, L. Patient-Reported Outcome and Observer-Reported Outcome Assessment in Rare Disease Clinical Trials: An ISPOR COA Emerging Good Practices Task Force Report. Value Health 2017, 20, 838–855. [Google Scholar] [CrossRef] [PubMed]
- Cella, D.; Riley, W.; Stone, A.; Rothrock, N.; Reeve, B.; Yount, S.; Amtmann, D.; Bode, R.; Buysse, D.; Choi, S.; et al. The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008. J. Clin. Epidemiol. 2010, 63, 1179–1194. [Google Scholar] [CrossRef] [Green Version]
- Barthel, D.; Otto, C.; Nolte, S.; Meyrose, A.K.; Fischer, F.; Devine, J.; Walter, O.; Mierke, A.; Fischer, K.I.; Thyen, U.; et al. The validation of a computer-adaptive test (CAT) for assessing health-related quality of life in children and adolescents in a clinical sample: Study design, methods and first results of the Kids-CAT study. Qual. Life Res. 2017, 26, 1105–1117. [Google Scholar] [CrossRef]
- Sreeram, I.I.; Ten Kate, C.A.; van Rosmalen, J.; Schnater, J.M.; Gischler, S.J.; Wijnen, R.M.H.; IJsselstijn, H.; Rietman, A.B. Patient-Reported Outcome Measures and Clinical Outcomes in Children with Foregut Anomalies. Children 2021, 8, 587. [Google Scholar] [CrossRef]
- Cella, D.; Hahn, E.A.; Jensen, S.E.; Butt, Z.; Nowinski, C.J.; Rothrock, N.; Lohr, K.N. Patient-Reported Outcomes in Performance Measurement; NBK424378; Research Tirangle Institute: Research Triangle Park, NC, USA, 2015. [Google Scholar] [CrossRef] [Green Version]
- Nolte, S.; Liegl, G.; Petersen, M.A.; Aaronson, N.K.; Costantini, A.; Fayers, P.M.; Groenvold, M.; Holzner, B.; Johnson, C.D.; Kemmler, G.; et al. General population normative data for the EORTC QLQ-C30 health-related quality of life questionnaire based on 15,386 persons across 13 European countries, Canada and the Unites States. Eur. J. Cancer 2019, 107, 153–163. [Google Scholar] [CrossRef]
- Dellenmark-Blom, M.; Quitmann, J.; Dingemann, J.; Witt, S.; Ure, B.M.; Bullinger, M.; Jonsson, L.; Gatzinsky, V.; Dingemann, C. Clinical Factors Affecting Condition-Specific Quality-of-Life Domains in Pediatric Patients after Repair of Esophageal Atresia: The Swedish-German EA-QOL Study. Eur. J. Pediatr. Surg. 2019, 30, 96–103. [Google Scholar] [CrossRef]
EAQOL 2–7 Years Proxy-Report (n = 101) | EAQOL 8–17 Years Proxy-Report (n = 136) | EAQOL 8–17 Years Self-Report (n = 130) | |
---|---|---|---|
Demographic characteristics | |||
Region | |||
North | 8 (7.9) | 2 (1.5) | 2 (1.5) |
South | 12 (11.9) | 18 (13.2) | 18 (13.8) |
West | 59 (58.4) | 81 (59.6) | 79 (60.8) |
East | 21 (20.8) | 35 (25.7) | 31 (23.8) |
Foreign country | 1 (1.0) | - | - |
Urban area A | 25 (24.8) | 35 (25.7) | 33 (25.4) |
Parental characteristics | |||
Age (years) B | 38.5 (35.4–41.7) | 45.7 (41.9–49.4) | |
Male | 21 (20.8) | 31 (22.8) | |
Single caregiver | 6 (5.9) | 10 (7.4) | 9 (6.9) |
Born in the Netherlands | 93 (92.1) | 120 (88.2) | 114 (87.7) |
Parental educational level | |||
Low (ISCED 0–2) | 7 (6.9) | 18 (13.2) | 18 (13.8) |
Middle (ISCED 3–4) | 28 (27.7) | 46 (33.8) | 43 (33.1) |
High (ISCED 5–8) | 66 (65.3) | 72 (52.9) | 68 (52.3) |
Parent with chronic condition | 8 (7.9) | 13 (9.6) | 13 (10.0) |
Child characteristics | |||
Age (years) B | 5.0 (3.5–6.5) | 13.6 (10.9–15.9) | 13.8 (11.0–15.9) |
Male | 60 (59.4) | 85 (62.5) | 83 (63.8) |
Gestational age (weeks) | 37.7 (35.8–39.9) | 38.0 (35.6–39.3) | 38.0 (35.6–39.3) |
Birth weight (grams) | 2790 (1978–3300) | 2740 (2200–3149) | 2750 (2215–3200) |
Preterm birth | 36 (35.6) | 47 (34.6) | 46 (35.4) |
Small for gestational age C | 38 (37.6) | 49 (36.0) | 46 (35.4) |
Type of EA D | |||
Type A | 4 (4.0) | 11 (8.1) | 11 (8.5) |
Type B | 2 (2.0) | 2 (1.5) | 2 (1.5) |
Type C | 87 (86.1) | 116 (85.3) | 110 (84.6) |
Type D | - | 2 (1.5) | 2 (1.5) |
Type E | 4 (4.0) | 3 (2.2) | 3 (2.3) |
Unknown | 4 (4.0) | 2 (1.5) | 2 (1.5) |
Staged repair | 8 (7.9) | 14 (10.3) | 14 (10.8) |
VACTERL association E | 16 (15.8) | 16 (11.8) | 15 (11.5) |
Type of repair | |||
Primary anastomosis | 85 (84.2) | 120 (88.2) | 115 (88.5) |
Delayed primary anastomosis | 10 (9.9) | 10 (7.4) | 9 (6.9) |
Esophageal replacement F | 1 (1.0) E | 6 (4.4) F | 6 (4.6) F |
Unknown | 5 (5.0) | - | - |
Postoperative complications | |||
Anastomotic leakage | 15 (14.9) | 16 (11.8) | 16 (12.3) |
Pneumothorax | 32 (31.7) | 46 (33.8) | 43 (33.1) |
Sepsis | 13 (12.9) | 11 (8.1) | 11 (8.5) |
Wound infection | 7 (6.9) | 5 (3.7) | 5 (3.8) |
Recurrent fistula | 1 (1.0) | 5 (3.7) | 6 (4.6) |
History of gastrostomy | 15 (14.9) | 18 (13.2) | 17 (13.1) |
History of ≥1 dilatation | 53 (52.5) | 68 (50.0) | 66 (50.8) |
Siblings | 77 (76.2) | 110 (80.9) | 106 (81.5) |
EAQOL 2–7 Years Proxy-Report (n = 101) | EAQOL 8–17 Years Proxy-Report (n = 136) | EAQOL 8–17 Years Self-Report (n = 84) A | |
---|---|---|---|
Symptoms | |||
Heartburn | 18 (17.8) | 17 (12.5) | 12 (14.3) |
Vomiting during or after meals | 21 (20.8) | 6 (4.4) | 2 (2.4) |
Difficulty to swallow food | 40 (39.6) | 30 (22.1) | 24 (28.6) |
Food getting stuck | 45 (44.6) | 39 (28.7) | 30 (35.7) |
Complaints of pain while swallowing | 16 (15.8) | 9 (6.6) | 8 (9.5) |
Coughing | 64 (63.4) | 63 (46.3) | 42 (50.0) |
Wheezing | 26 (25.7) | 9 (6.6) | 11 (13.1) |
Dyspnea at rest | 10 (9.9) | 6 (4.4) | 7 (8.3) |
Dyspnea during physical activity | 12 (11.9) | 20 (14.7) | 25 (29.8) |
Chest tightness | 3 (3.0) | 9 (6.6) | 14 (16.7) |
Airway infections | 14 (13.9) | 12 (8.8) | 3 (3.6) |
Recurrent pulmonary problems | 34 (33.7) | 32 (23.5) | 14 (16.7) |
Feeding difficulties | |||
Avoiding food that is difficult to swallow | 35 (34.7) | 31 (22.8) | 12 (14.3) |
Eating small portions | 43 (42.6) | 26 (19.1) | 13 (15.5) |
Requiring energy-enriched food | 21 (20.8) | 8 (5.9) | 5 (6.0) |
Requiring adjusted food consistency | 25 (24.8) | 1 (0.7) | - |
Needing >30 min to finish a meal | 36 (35.6) | 17 (12.5) | 8 (9.5) |
Requiring increased fluid intake | 45 (44.6) | 43 (31.6) | 31 (36.9) |
Nutrition through tube or gastrostomy | 12 (11.9) | 2 (1.5) | 1 (1.2) |
Receiving nutrition through infusion pump | - | - | - |
Needing adult support while eating | 28 (27.7) | 4 (2.9) | 14 (16.7) |
Items (n) | Respondents (n) | Median (IQR) | Floor, n (%) | Ceiling, n (%) | Cronbach’s Alpha | Respondents (n) A | Level of Agreement, ICC (95% CI) | |
---|---|---|---|---|---|---|---|---|
Children 2–7 years old (proxy-report) | ||||||||
Eating | 7 | 101 | 82.14 (65.48–92.86) | - | 6 (5.9) | 0.85 | 68 | 0.77 (0.65–0.85) |
Physical health and treatment | 6 | 92 | 75.00 (65.50–90.00) | - | 9 (8.9) | 0.79 | 62 | 0.84 (0.75–0.90) |
Social isolation and stress | 4 | 71 | 93.75 (68.75–100.00) | - | 30 (29.7) | 0.77 | 42 | 0.66 (0.44–0.0.80) |
Total score | 17 | 101 | 79.69 (66.99–91.07) | - | 5 (5.0) | 0.90 | 70 B | 0.86 (0.78–0.91) |
Children 8–17 years old (proxy-report) | ||||||||
Eating | 8 | 128 | 81.70 (71.88–90.63) | - | 18 (14.1) | 0.74 | 76 | 0.74 (0.62–0.83) |
Social relationships | 7 | 134 | 89.29 (81.25–100.00) | - | 44 (32.8) | 0.75 | 80 | 0.81 (0.72–0.87) |
Body perception | 5 | 133 | 100.00 (85.00–100.00) | - | 68 (51.1) | 0.79 | 79 | 0.71 (0.56–0.81) |
Health and well-being | 4 | 134 | 91.67 (79.69–100.00) | - | 37 (27.6) | 0.59 | 80 | 0.80 (0.70–0.87) |
Total score | 24 | 136 | 87.50 (79.21–93.28) | - | 6 (4.4) | 0.86 | 82 C | 0.84 (0.77–0.90) |
Children 8–17 years old (self-report) | ||||||||
Eating | 8 | 129 | 81.25 (68.75–92.19 | - | 17 (13.2) | 0.69 | 69 | 0.78 (0.66–0.86) |
Social relationships | 7 | 129 | 89.29 (76.79–100.00) | - | 37 (28.7) | 0.73 | 70 | 0.68 (0.53–0.79) |
Body perception | 5 | 129 | 100.00 (90.00–100.00) | - | 77 (59.7) | 0.76 | 69 | 0.54 (0.35–0.69) |
Health and well-being | 4 | 128 | 89.58 (81.25–100.00) | - | 38 (29.7) | 0.39 | 68 | 0.70 (0.56–0.81) |
Total score | 24 | 130 | 86.71 (78.72–94.75) | - | 8 (6.2) | 0.85 | 71 D | 0.72 (0.85–0.81) |
2–7 Years Old (Proxy-Report) | 8–17 Years Old (Proxy-Report) | 8–17 Years Old (Self-Report) | ||||||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Yes | No | Yes | No | Yes | No | |||||||||||||
n | Median (IQR) | n | Median (IQR) | p-Value | Effect Size (r) | n | Median (IQR) | n | Median (IQR) | p-Value | Effect Size (r) | n | Median (IQR) | n | Median (IQR) | p-Value | Effect Size (r) | |
Surgical characteristics | ||||||||||||||||||
Primary repair | 85 | 81.25 (68.30–92.42) | 11 | 66.18 (46.88–76.47) | 0.007 | 0.27 | 120 | 87.50 (80.43–93.46) | 16 | 84.71 (65.70–89.84) | 0.058 | 0.16 | 115 | 87.50 (79.17–95.46) | 15 | 81.52 (68.48–90.63) | 0.118 | 0.14 |
History of gastrostomy | 15 | 66.18 (50.00–82.14) | 82 | 82.03 (69.03–92.65) | 0.003 | −0.3 | 18 | 84.71 (65.84–89.06) | 118 | 87.50 (80.43–93.55) | 0.042 * | −0.17 | 17 | 82.29 (70.70–90.63) | 113 | 87.50 (79.17–95.55) | 0.114 | −0.14 |
History of ≥1 dilatation | 53 | 80.00 (67.16–92.52) | 47 | 79.41 (67.31–87.50) | 0.785 | −0.03 | 68 | 88.35 (74.22–93.21) | 68 | 87.20 (80.43–93.28) | 0.689 | −0.03 | 66 | 84.38 (73.95–95.01) | 64 | 87.50 (81.32–94.23) | 0.318 | −0.09 |
Digestive symptoms | ||||||||||||||||||
Heartburn | 18 | 69.79 (60.00–81.99) | 66 | 84.69 (72.52–93.08) | 0.005 | −0.31 | 17 | 83.70 (76.04–87.13) | 114 | 87.83 (79.99–93.48) | 0.08 | −0.15 | 12 | 82.43 (80.73–88.72) | 66 | 90.63 (79.30–96.63) | 0.028 | −0.25 |
Dysphagia A | 60 | 72.39 (62.68–85.88) | 41 | 88.24 (77.99–94.85) | <0.001 * | −0.42 | 51 | 83.33 (72.92–90.63) | 85 | 88.54 (83.33–95.61) | 0.001 * | −0.29 | 39 | 81.25 (72.73–93.48) | 44 | 91.49 (84.48–97.92) | 0.001 * | −0.36 |
Vomiting | 21 | 69.12 (61.65–78.24) | 80 | 83.32 (70.21–92.65) | 0.002 * | −0.31 | 6 | 73.08 (53.13–84.62) | 130 | 87.50 (80.16–93.00) | 0.167 | −0.12 | 2 | 86.03 | 81 | 89.13 (78.27–95.83) | 0.801 | −0.03 |
Respiratory symptoms | ||||||||||||||||||
Coughing | 64 | 72.39 (62.68–85.88) | 37 | 89.71 (78.31–95.71) | <0.001 * | −0.43 | 63 | 85.42 (73.96–91.30) | 72 | 88.88 (82.95–95.13) | 0.009 | −0.22 | 42 | 85.10 (76.56–95.50) | 41 | 90.63 (81.52–97.25) | 0.078 | −0.15 |
Wheezing | 26 | 68.45 (58.46–80.35) | 73 | 84.38 (71.45–93.02) | <0.001 * | −0.37 | 9 | 85.42 (74.40–91.06) | 127 | 87.50 (80.21–93.42) | 0.451 | −0.06 | 11 | 81.25 (77.08–93.18) | 72 | 89.68 (79.21–96.28) | 0.181 | −0.19 |
Dyspnea at rest | 10 | 60.66 (44.28–72.93) | 90 | 82.58 (69.03–92.30) | <0.001 * | −0.36 | 6 | 79.94 (72.66–88.94) | 129 | 87.50 (79.78–93.48) | 0.202 | −0.11 | 7 | 79.17 (72.73–86.46) | 75 | 89.58 (79.35–96.43) | 0.106 | −0.18 |
Dyspnea during physical activity | 12 | 61.08 (46.09–68.53) | 88 | 82.58 (70.55–92.06) | <0.001 * | −0.37 | 20 | 82.95 (72.06–87.50) | 112 | 88.54 (80.26–93.75) | 0.023 | −0.2 | 25 | 80.68 (72.23–90.49) | 57 | 91.30 (84.04–96.59) | 0.002 * | −0.35 |
Chest tightness | 3 | 45.31 | 84 | 82.81 (69.34–95.53) | 0.041 | −0.22 | 9 | 87.50 (78.46–91.74) | 125 | 87.50 (79.78–93.48) | 0.776 | −0.02 | 14 | 81.97 (72.48–93.75) | 68 | 89.58 (79.68–96.28) | 0.089 | −0.19 |
Airway infections | 14 | 72.39 (57.58–82.26) | 85 | 82.35 (68.30–92.65) | 0.014 | −0.25 | 12 | 72.40 (68.95–85.64) | 123 | 88.16 (80.43–93.75) | 0.002 * | −0.27 | 3 | 80.68 | 79 | 89.58 (79.67–95.83) | 0.095 | −0.18 |
Feeding difficulties | ||||||||||||||||||
Avoiding certain food | 35 | 66.18 (53.85–76.92) | 61 | 84.39 (74.26–93.93) | <0.001 * | −0.54 | 31 | 80.68 (72.62–86.46) | 104 | 88.54 (83.42–94.79) | <0.001 * | −0.33 | 12 | 79.17 (71.17–92.71) | 69 | 89.58 (80.01–96.21) | 0.064 | −0.21 |
Eating small portions | 43 | 70.00 (54.69–82.81) | 55 | 85.94 (73.44–93.75) | <0.001 * | −0.45 | 26 | 78.65 (68.23–87.09) | 108 | 88.88 (81.32–94.79) | <0.001 * | −0.37 | 13 | 73.96 (69.70–87.73) | 69 | 90.63 (81.91–96.51) | 0.001 * | −0.35 |
Energy-enriched food | 21 | 58.82 (51.47–76.63) | 79 | 83.83 (70.45–92.65) | <0.001 * | −0.42 | 8 | 70.55 (65.89–81.30) | 128 | 87.50 (80.43–93.46) | 0.005 | −0.24 | 5 | 82.29 (71.33–90.63) | 77 | 89.58 (79.17–95.83) | 0.241 | −0.13 |
Adjusted food consistency | 25 | 67.65 (53.68–76.63) | 73 | 85.29 (72.57–93.02) | <0.001 * | −0.44 | 1 | 80.43 | 134 | 87.50 (79.30–93.44) | 0.426 | −0.07 | 0 | 83 | 89.13 (79.17–95.83) | - | - | |
Needing >30 min to finish a meal | 36 | 67.75 (55.35–79.89) | 61 | 85.94 (75.74–93.93) | <0.001 * | −0.5 | 17 | 78.13 (69.27–84.69) | 119 | 88.54 (80.68–93.75) | <0.001 * | −0.19 | 8 | 79.69 (73.44–85.50) | 71 | 89.77 (79.35–96.59) | 0.025 | −0.25 |
Increased fluid intake during meals | 45 | 75.00 (83.28–86.76) | 51 | 85.00 (70.45–94.12) | 0.015 * | −0.25 | 43 | 81.25 (71.88–86.46) | 90 | 90.63 (83.24–95.50) | <0.001 * | −0.42 | 31 | 79.35 (71.74–90.63) | 50 | 92.19 (84.21–97.92) | <0.001 * | −0.44 |
Nutrition through tube or gastrostomy | 12 | 53.39 (45.70–61.10) | 87 | 82.81 (70.45–92.65) | <0.001 * | −0.5 | 2 | 53.68 | 134 | 87.50 (80.00–83.44) | 0.027 | −0.19 | 1 | 68.75 | 82 | 89.36 (79.17–95.83) | 0.138 | −0.16 |
Adult support while eating | 28 | 65.00 (50.74–78.96) | 71 | 85.00 (72.06–92.65) | <0.001 * | −0.41 | 4 | 66.15 (54.69–76.26) | 132 | 87.50 (80.43–93.46) | 0.006 | −0.24 | 0 | 83 | 89.13 (79.17–95.83) | - | - |
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ten Kate, C.A.; IJsselstijn, H.; Dellenmark-Blom, M.; van Tuyll van Serooskerken, E.S.; Joosten, M.; Wijnen, R.M.H.; van Wijk, M.P.; on behalf of the DCEA Study Group. Psychometric Performance of a Condition-Specific Quality-of-Life Instrument for Dutch Children Born with Esophageal Atresia. Children 2022, 9, 1508. https://doi.org/10.3390/children9101508
ten Kate CA, IJsselstijn H, Dellenmark-Blom M, van Tuyll van Serooskerken ES, Joosten M, Wijnen RMH, van Wijk MP, on behalf of the DCEA Study Group. Psychometric Performance of a Condition-Specific Quality-of-Life Instrument for Dutch Children Born with Esophageal Atresia. Children. 2022; 9(10):1508. https://doi.org/10.3390/children9101508
Chicago/Turabian Styleten Kate, Chantal A., Hanneke IJsselstijn, Michaela Dellenmark-Blom, E. Sofie van Tuyll van Serooskerken, Maja Joosten, René M. H. Wijnen, Michiel P. van Wijk, and on behalf of the DCEA Study Group. 2022. "Psychometric Performance of a Condition-Specific Quality-of-Life Instrument for Dutch Children Born with Esophageal Atresia" Children 9, no. 10: 1508. https://doi.org/10.3390/children9101508