Comparison of Patients’ and Doctors’ Reports on Health‐related Quality of Life in Celiac Disease
Open accessAbstract
Objective: To investigate whether implementation of a celiac disease (CD)–specific health‐related quality of life (HRQOL) questionnaire would add value to CD follow‐up visits; we compared patients’ self‐reported CD‐specific HRQOL with the physician's report provided during a regular CD follow‐up visit in children and young adults. Methods: A cross‐sectional study in the control group of a study on self‐management in CD (CoelKids). Eligible patients had CD for ≥1 year and were 25 years or younger. They completed a CD‐specific HRQOL questionnaire (CDDUX) after their regular follow‐up visit. Their physicians were unaware of the present study's objectives or self‐reported HRQOL. Primary outcome: agreement between physician‐reported and self‐reported HRQOL. Secondary outcomes: patient variables predicting a discrepancy between reports, or a lower HRQOL. Results: Physician‐reported HRQOL was available in 70 of 78 enrolled patients. The self‐reported and physician‐reported HRQOL were concordant in 30 of 70 (K = 0.093), 6 of them had a poor self‐reported HRQOL. Reports were discrepant in 40 of 70; all 40 self‐reported a poor HRQOL. Discrepancies occurred more frequently in patients with a disease duration <9 years (32/40 with discrepant reports were diagnosed <9 years ago vs 17/30 with no discrepancy, P<0.001) and in females (35/40 with discrepant reports were girls versus 16 of 30 with no discrepancy, P = 0.001). Both factors were predictors of a poorer HRQOL. Conclusions: During regular CD follow‐up visits, physicians did not report a poor HRQOL in 40 of 46 children and young adults with a poor self‐reported HRQOL. This is consistent with previous studies examining other chronic diseases and supports the implementation of self‐reported CD‐specific HRQOL measurements in CD follow‐up visits.
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
Physicians overestimate the health-related quality of life of children and young adults with celiac disease during follow-up.
“In the only study on the subject, physicians were found to overestimate the HRQOL of children and young adults with CD during follow-up (109).”
From ESPGHAN Position Paper on Management and Follow-up of Children and Adolescents With Celiac Disease. (2022) · cites this paper as [109]
Five of six studies using celiac disease-specific health-related quality of life questionnaires found that the health-related quality of life of children and adolescents with celiac disease was poor or neutral.
“However, five of the six studies using CD-specific HRQOL questionnaires (CDDUX, CDQL, CDQOL Scale-KINDL, CDPQOL) found that the HRQOL of children and adolescents with CD was poor or neutral (82, 96, 100, 105, 109).”
From ESPGHAN Position Paper on Management and Follow-up of Children and Adolescents With Celiac Disease. (2022) · cites this paper as [109]
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Cites
Husby, S., Koletzko, S., Korponay‐Szabó, I. R., Mearin, M. L., Phillips, A., Shamir, R., Troncone, R., Giersiepen, K., Branski, D., Catassi, C., et al. (2012) · Journal of Pediatric Gastroenterology and Nutrition · doi:10.1097/mpg.0b013e31821a23d0 · Cited by 2,683 · see citing works
Self-citationMeasuring Health-Related Quality of Life
Guyatt, G., Feeny, D., & Patrick, D. (1993) · Annals of Internal Medicine · doi:10.7326/0003-4819-118-8-199304150-00009 · Cited by 2,168 · see citing works
Using quality of life measures in the clinical setting
Higginson, I. J., & Carr, A. J. (2001) · BMJ · doi:10.1136/bmj.322.7297.1297 · Cited by 982 · see citing works
Quality of life: patients and doctors don't always agree: a meta-analysis
Janse, A. J., Gemke, R. J. B. J., Uiterwaal, C. S. P. M., van der Tweel, I., Kimpen, J. L. L., & Sinnema, G. (2004) · Journal of Clinical Epidemiology · doi:10.1016/j.jclinepi.2003.11.013 · Cited by 337 · see citing works
Celiac Disease Revealed in 3% of Swedish 12‐year‐olds Born During an Epidemic
Myléus, A., Ivarsson, A., Webb, C., Danielsson, L., Hernell, O., Högberg, L., Karlsson, Ε., Lagerqvist, C., Norström, F., Rosén, A., et al. (2009) · Journal of Pediatric Gastroenterology and Nutrition · doi:10.1097/mpg.0b013e31818c52cc · Cited by 303 · see citing works
The Canadian Celiac Health Survey
Cranney, A., Zarkadas, M., Graham, I. D., Butzner, J. D., Rashid, M., Warren, R. E., Molloy, M., Case, S., Burrows, V. D., & Switzer, C. M. (2007) · Digestive Diseases and Sciences · doi:10.1007/s10620-006-9258-2 · Cited by 191 · see citing works
Celiac disease and irritable bowel-type symptoms
O’Leary, C., Wieneke, P., Buckley, S., O’Regan, P., Cronin, C. C., Quigley, E. M. M., & Shanahan, F. (2002) · The American Journal of Gastroenterology · doi:10.1111/j.1572-0241.2002.05690.x · Cited by 154 · see citing works
Biagi, F., Bianchi, P. I., Marchese, A., Trotta, L., Vattiato, C., Balduzzi, D., Brusco, G., Andrealli, A., Cisarò, F., Astegiano, M., et al. (2012) · British Journal of Nutrition · doi:10.1017/s0007114511007367 · Cited by 151 · see citing works
van Doorn, R. K., Winkler, L. M., Zwinderman, A. H., Mearin, M. L., & Koopman, H. M. (2008) · Journal of Pediatric Gastroenterology and Nutrition · doi:10.1097/mpg.0b013e31815ef87d · Cited by 134 · see citing works
Self-citationHealth-related quality of life in children with celiac disease
Kolsteren, M., Koopman, H. M., Schalekamp, G., & Mearin, M. L. (2001) · The Journal of Pediatrics · doi:10.1067/mpd.2001.111504 · Cited by 132 · see citing works
Self-citationCasellas, F., Rodrigo, L., Vivancos, J., Riestra, S., Pantiga, C., Baudet, J., Junquera, F., Puig‐Diví, V., Abadia, C., Papo, M., et al. (2008) · World Journal of Gastroenterology · doi:10.3748/wjg.14.46 · Cited by 130 · see citing works
Health-related quality of life in adult coeliac disease in Germany: results of a national survey
Häuser, W., Gold, J., Stein, J. M., Caspary, W. F., & Stallmach, A. (2006) · European Journal of Gastroenterology & Hepatology · doi:10.1097/01.meg.0000221855.19201.e8 · Cited by 116 · see citing works
Psychological well-being of adult coeliac patients treated for 10 years
Roos, S., Kärner, A., & Hallert, C. (2006) · Digestive and Liver Disease · doi:10.1016/j.dld.2006.01.004 · Cited by 113 · see citing works
Morrow, A., Hayen, A. D., Quine, S., Scheinberg, A. M., & Craig, J. C. (2011) · Child Care Health and Development · doi:10.1111/j.1365-2214.2011.01240.x · Cited by 104 · see citing works
Celiac Disease Among Children and Adolescents
Mearin, M. L. (2007) · Current problems in pediatric and adolescent health care · doi:10.1016/j.cppeds.2007.01.001 · Cited by 84 · see citing works
Self-citationByström, I.-M., Hollén, E., Fälth‐Magnusson, K., & Johansson, A. (2012) · Gastroenterology Research and Practice · doi:10.1155/2012/986475 · Cited by 82 · see citing works
Altobelli, E., Paduano, R., Gentile, T., Caloisi, C., Marziliano, C., Necozione, S., & di Orio, F. (2013) · Health and Quality of Life Outcomes · doi:10.1186/1477-7525-11-204 · Cited by 63 · see citing works
Janse, A. J., Sinnema, G., Uiterwaal, C. S. P. M., Kimpen, J. L. L., & Gemke, R. J. B. J. (2008) · Acta Paediatrica · doi:10.1111/j.1651-2227.2008.00847.x · Cited by 59 · see citing works
Nordyke, K., Norström, F., Lindholm, L., Stenlund, H., Rosén, A., & Ivarsson, A. (2013) · BMC Public Health · doi:10.1186/1471-2458-13-142 · Cited by 57 · see citing works
Dietary compliance and health-related quality of life in patients with coeliac disease
Hopman, E. G. D., Koopman, H. M., Wit, J. M., & Mearin, M. L. (2009) · European Journal of Gastroenterology & Hepatology · doi:10.1097/meg.0b013e3283267941 · Cited by 54 · see citing works
Self-citationHealth‐related quality of life in Spanish children with coeliac disease
Barrio, J., Román, E., Cilleruelo, M., Márquez, M., Mearin, M., & Fernández, C. (2016) · Journal of Pediatric Gastroenterology and Nutrition · doi:10.1097/mpg.0000000000000963 · Cited by 41 · see citing works
Self-citationTontini, G. E., Rondonotti, E., Saladino, V., Saibeni, S., de Franchis, R., & Vecchi, M. L. (2010) · Digestion · doi:10.1159/000265549 · Cited by 40 · see citing works
Myléus, A., Petersen, S., Carlsson, A., Hammarroth, S., Högberg, L., & Ivarsson, A. (2014) · BMC Public Health · doi:10.1186/1471-2458-14-425 · Cited by 37 · see citing works
(2013) · Archivos Argentinos de Pediatria · doi:10.5546/aap.2014.eng.19 · Cited by 18 · see citing works
Pico, M., & Spirito, M. F. (2013) · Archivos Argentinos de Pediatria · doi:10.5546/aap.2014.19 · Cited by 13 · see citing works
Flagged first, then by citations
Cited by
Sorted by citations
ESPGHAN Position Paper on Management and Follow-up of Children and Adolescents With Celiac Disease.
Mearin, M. L., Agardh, D., Antunes, H., Al‐toma, A., Auricchio, R., Castillejo, G., Catassi, C., Ciacci, C., Discepolo, V., Dolinsek, J., et al. (2022) · Journal of pediatric gastroenterology and nutrition · doi:10.1097/mpg.0000000000003540 · Cited by 186 · see citing works
Self-citationOutcome measures in coeliac disease trials: the Tampere recommendations
Ludvigsson, J. F., Ciacci, C., Green, P. H., Kaukinen, K., Korponay-Szabo, I. R., Kurppa, K., Murray, J. A., Lundin, K. E. A., Maki, M. J., Popp, A., et al. (2018) · Gut · doi:10.1136/gutjnl-2017-314853 · Cited by 100 · see citing works
Leinonen, H., Kivelä, L., Lähdeaho, M., Huhtala, H., Kaukinen, K., & Kurppa, K. (2019) · Nutrients · doi:10.3390/nu11081718 · Cited by 27 · see citing works
Health-related quality of life using specific and generic questionnaires in Spanish coeliac children
Torres, J. B., Cilleruelo, M. L., Román, E., & Fernández, C. (2020) · Health and Quality of Life Outcomes · doi:10.1186/s12955-020-01494-x · Cited by 13 · see citing works
Review on pediatric coeliac disease from a clinical perspective
Wessels, M. M. S., Auricchio, R., Dolinšek, J., Donat, E., Gillett, P. M., Mårild, K., Meijer-Boekel, C. R., Popp, A., & Mearin, M. L. (2022) · European Journal of Pediatrics · doi:10.1007/s00431-022-04379-x · Cited by 12 · see citing works
Self-citationMeyer, S., Monachesi, C., Barchetti, M., Lionetti, E., & Catassi, C. (2023) · Children · doi:10.3390/children10081300 · Cited by 28 · see citing works
Psychological, Psychiatric, and Organic Brain Manifestations of Celiac Disease
Ciaccio, E. J., Lee, A. R., Lebovits, J., Wolf, R. L., Lewis, S. K., Ciacci, C., & Green, P. H. R. (2024) · Digestive Diseases · doi:10.1159/000534219 · Cited by 8 · see citing works
Meijer-Boekel, C. R., Bakker, J. A., Boers, A., Jansen, S. J., Mengi, Z., & Mearin, M. L. (2022) · Gastro Hep Advances · doi:10.1016/j.gastha.2022.04.015 · Cited by 8 · see citing works
Self-citationMartín‐Masot, R., Labella, A., Baena‐García, L., Flor‐Alemany, M., López‐Frías, M., de la Higuera, M., Maldonado, J. A., & Nestares, T. (2022) · Applied Sciences · doi:10.3390/app122211680 · Cited by 7 · see citing works
Anti-gliadin antibodies in breast milk from celiac mothers on a gluten-free diet
The PREVENT CD Study Group, Roca, M., Vriezinga, S. L., Crespo‐Escobar, P., Auricchio, R., Hervás, D., Castillejo, G., Mena, M. C., Polanco, I., Troncone, R., et al. (2017) · European Journal of Nutrition · doi:10.1007/s00394-017-1476-1 · Cited by 6 · see citing works
Self-citationChen, V., & Schmidt, F. B. (2021) · Pediatric Dermatology · doi:10.1111/pde.14679 · Cited by 5 · see citing works
Sareila, H., Kurppa, K., Huhtala, H., Laurikka, P., Arnala, S., Koskela, T., Kaukinen, K., & Kivelä, L. (2024) · Scandinavian Journal of Gastroenterology · doi:10.1080/00365521.2024.2431628 · Cited by 5 · see citing works
The Modern Face of Celiac Disease. What Should an Internist Know?
Matkovska, N. R., Глушко, Л. В., Гавриш, Т. Ю., Волошинович, Н. М., Skrypnyk, L., & Маслій, У. І. (2018) · Family Medicine · doi:10.30841/2307-5112.5.2018.166278 · Cited by 2 · see citing works
Therapeutic targets based on the modulation of immune function by gut bacteria
Caminero, A., & Verdu, E. F. (2021) · Elsevier eBooks · doi:10.1016/b978-0-12-821594-4.00004-9 · Cited by 1 · see citing works
Diet Quality in Children and Adolescents with Gastrointestinal and Liver Disease
Alzaben, A. S. (2017) · ERA: Education and Research Archive (University of Alberta) · doi:10.7939/r38p5vq0w
Barrio, J., Cilleruelo, M. L., Román, E., & Fernández, C. (2020) · Figshare · doi:10.6084/m9.figshare.12719902
Zampatti, N., Proietti, S., Malerba, F., Giaroli, V., Lillo, A. D., D’Ambrosio, T., Corsolini, F., Capuozzo, P., Bonassi, S., & Crocco, M. (2026) · European Journal of Pediatrics · doi:10.1007/s00431-026-07538-6
- Authors
- Vriezinga, S. L., Farih, N., van der Meulen‐de Jong, A. E., Putter, H., Rings, E. H. H. M., Schaart, M. W., Schweizer, J. J., Wessels, M. M. S., & Mearin, M. L.
- Affiliations
- Leiden University Medical Center (NL)
- Department of Gastroenterology and Hepatology Leiden University Medical Center Leiden
- Corresponding author
- Vriezinga, Sabine L.
- Farih, Nora
- Rings, Edmond H.H.M.
- Schaart, Maaike W.
- Schweizer, Joachim J.
- Wessels, Margreet M.S.
- Mearin, M. Luisa
- Venue
- Journal of Pediatric Gastroenterology and Nutrition
- Publisher
- Wiley
- Published
- 2017-05
- Volume
- 64
- Issue
- 5
- Pages
- 737-741
- ISSN
- 0277-2116 (ISSN-L)
- 1536-4801
- OpenAlex
- W2492468438
- Cited by
- 17
- References
- 25
- Citations by year
- 2026: 1 · 2024: 2 · 2023: 1 · 2022: 4 · 2021: 2 · 2020: 2 · 2019: 1 · 2018: 2 · 2017: 2
- FWCI
- 1.82
- Type
- journal article
- Language
- en
- Open access
- Locations
- Journal of Pediatric Gastroenterology and Nutrition (publishedVersion)
- PubMed (publishedVersion)
- EUR Research Repository (Erasmus University Rotterdam) (publishedVersion)
- Leiden Repository (Leiden University) (submittedVersion)
- EUR Research Repository (Erasmus University Rotterdam) (submittedVersion)
- Data Archiving and Networked Services (DANS) (submittedVersion, other-oa)
- Funders
- ZonMw (171201006)
- Topics
- Health Sciences › Medicine › Gastroenterology › Celiac Disease Research and Management
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Inflammatory Bowel Disease
- Keywords
- celiac disease, health-related quality of life, patient-reported outcomes, physician-reported outcomes, children and young adults, disease duration, sex differences
- MeSH terms
- Adolescent, Adult, Celiac Disease, Child, Child, Preschool, Cross-Sectional Studies, Female, Health Status Indicators, Humans, Male, Physician-Patient Relations, Physicians, Quality of Life, Multivariate Analysis, Young Adult, Self Report
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
