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Long-term durability between parent and child patient-reported outcomes in eosinophilic esophagitis.
Martin, Lisa J; Zhang, Xue; Chehade, Mirna; Davis, Carla M; Dellon, Evan S; Falk, Gary W; Gupta, Sandeep K; Hirano, Ikuo; Hiremath, Girish S; Katzka, David A; Khoury, Paneez; Leung, John; Menard-Katcher, Paul; Gonsalves, Nirmala; Pesek, Robert D; Spergel, Jonathan M; Wechsler, Joshua B; Kliewer, Kara; Arva, Nicoleta C; Collins, Margaret H; Pletneva, Maria; Yang, Guang-Yu; Furuta, Glenn T; Rothenberg, Marc E; Aceves, Seema S.
Afiliación
  • Martin LJ; Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio; University of Cincinnati College of Medicine, Cincinnati, Ohio.
  • Zhang X; Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
  • Chehade M; Mount Sinai Center for Eosinophilic Disorders, Icahn School of Medicine at Mount Sinai, New York, NY.
  • Davis CM; Division of Immunology, Allergy, and Retrovirology, Baylor College of Medicine, Texas Children's Hospital, Houston, Tex; Food Allergy Program, Texas Children's Hospital, Houston, Tex.
  • Dellon ES; Center for Esophageal Diseases and Swallowing, Center for Gastrointestinal Biology and Disease, University of North Carolina School of Medicine, Chapel Hill, NC; Division of Gastroenterology and Hepatology, Center for Gastrointestinal Biology and Disease, University of North Carolina School of Medic
  • Falk GW; Division of Gastroenterology and Hepatology, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pa.
  • Gupta SK; Children's of Alabama, University of Alabama at Birmingham, Birmingham, Ala.
  • Hirano I; Division of Gastroenterology and Hepatology, Kenneth Griffin Esophageal Center, Northwestern University Feinberg School of Medicine, Chicago, Ill.
  • Hiremath GS; Division of Pediatric Gastroenterology, Hepatology, and Nutrition, Vanderbilt University Medical Center, Nashville, Tenn.
  • Katzka DA; Division of Digestive and Liver Diseases, Columbia University Irving Medical Center, New York, NY.
  • Khoury P; National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, Md.
  • Leung J; Division of Allergy/Immunology, Tuft's Medical Center, Boston, Mass; Division of Gastroenterology, Tuft's Medical Center, Boston, Mass.
  • Menard-Katcher P; University of Colorado School of Medicine, Anschutz Medical Campus, Aurora, Colo.
  • Gonsalves N; Division of Gastroenterology and Hepatology, Kenneth Griffin Esophageal Center, Northwestern University Feinberg School of Medicine, Chicago, Ill.
  • Pesek RD; Division of Allergy/Immunology, University of Arkansas for Medicine Sciences, Little Rock, Ark; Arkansas Children's Hospital, Little Rock, Ark.
  • Spergel JM; Department of Pediatrics, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pa; Division of Allergy and Immunology, Children's Hospital of Philadelphia, Philadelphia, Pa.
  • Wechsler JB; Division of Gastroenterology, Hepatology and Nutrition, Ann and Robert H. Lurie Children's Hospital of Chicago, Chicago, Ill.
  • Kliewer K; Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
  • Arva NC; Department of Pathology, Ann and Robert H. Lurie Children's Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, Ill.
  • Collins MH; Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio; University of Cincinnati College of Medicine, Cincinnati, Ohio.
  • Pletneva M; Department of Pathology, University of Utah, Salt Lake City, Utah.
  • Yang GY; Department of Pathology, Northwestern University Feinberg School of Medicine, Chicago, Ill.
  • Furuta GT; Section of Pediatric Gastroenterology, Hepatology and Nutrition, Digestive Health Institute, Children's Hospital of Colorado, Aurora, Colo; Gastrointestinal Eosinophilic Disease Program, Mucosal Inflammation Program, University of Colorado School of Medicine, Aurora, Colo.
  • Rothenberg ME; Division of Allergy and Immunology, Cincinnati Children's Hospital Medical Center and the University of Cincinnati College of Medicine, Cincinnati, Ohio.
  • Aceves SS; University of California San Diego, Rady Children's Hospital of San Diego, San Diego, Calif. Electronic address: saceves@health.ucsd.edu.
Article en En | MEDLINE | ID: mdl-39059504
ABSTRACT

BACKGROUND:

Because young children cannot self-report symptoms, there is a need for parent surrogate reports. Although early work suggested parent-child alignment for eosinophil esophagitis (EoE) patient-reported outcomes (PROs), the longitudinal alignment is unclear.

OBJECTIVE:

We sought to assess the agreement and longitudinal stability of PROs between children with EoE and their parents.

METHODS:

A total of 292 parent-child respondents completed 723 questionnaires over 5 years in an observational trial in the Consortium of Eosinophilic Gastrointestinal Disease Researchers. The change in and agreement between parent and child Pediatric Eosinophilic Esophagitis Symptom Score version 2 (PEESSv2.0) and Pediatric Quality of Life Eosinophilic Esophagitis Module (PedsQL-EoE) PROs over time were assessed using Pearson correlation and Bland-Altman analyses. Clinical factors influencing PROs and their agreement were evaluated using linear mixed models.

RESULTS:

The cohort had a median disease duration equaling 3.7 years and was predominantly male (73.6%) and White (85.3%). Child and parent PEESSv2.0 response groups were identified and were stable over time. There was strong correlation between child and parent reports (PEESSv2.0, 0.83;PedsQL-EoE, 0.74), with minimal pairwise differences for symptoms. Longitudinally, parent-reported PedsQL-EoE scores were stable (P ≥ .32), whereas child-reported PedsQL-EoE scores improved (P = .026). A larger difference in parent and child PedsQL-EoE reports was associated with younger age (P < .001), and differences were driven by psychosocial PRO domains.

CONCLUSIONS:

There is strong longitudinal alignment between child and parent reports using EoE PROs. These data provide evidence that parent report is a stable proxy for objective EoE symptoms in their children.
Palabras clave

Texto completo: 1 Banco de datos: MEDLINE Idioma: En Revista: J Allergy Clin Immunol Año: 2024 Tipo del documento: Article

Texto completo: 1 Banco de datos: MEDLINE Idioma: En Revista: J Allergy Clin Immunol Año: 2024 Tipo del documento: Article