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Pediatric Patient and Caregiver Agreement on Perioperative Expectations and Self-Reported Outcomes

  • Audra J. Reiter
    Affiliations
    Surgical Outcomes Quality Improvement Center, Northwestern University Feinberg School of Medicine, Chicago, Illinois

    Division of Pediatric Surgery, Department of Surgery, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children's Hospital, Chicago, Illinois
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  • Gwyneth A. Sullivan
    Affiliations
    Surgical Outcomes Quality Improvement Center, Northwestern University Feinberg School of Medicine, Chicago, Illinois

    Division of Pediatric Surgery, Department of Surgery, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children's Hospital, Chicago, Illinois
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  • Andrew Hu
    Affiliations
    Surgical Outcomes Quality Improvement Center, Northwestern University Feinberg School of Medicine, Chicago, Illinois

    Division of Pediatric Surgery, Department of Surgery, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children's Hospital, Chicago, Illinois
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  • Yao Tian
    Affiliations
    Surgical Outcomes Quality Improvement Center, Northwestern University Feinberg School of Medicine, Chicago, Illinois
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  • Martha-Conley E. Ingram
    Affiliations
    Surgical Outcomes Quality Improvement Center, Northwestern University Feinberg School of Medicine, Chicago, Illinois

    Division of Pediatric Surgery, Department of Surgery, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children's Hospital, Chicago, Illinois
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  • Salva N. Balbale
    Affiliations
    Center for Health Services and Outcomes Research, Institute of Public Health and Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois

    Division of Gastroenterology and Hepatology, Department of Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois
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  • Julie K. Johnson
    Affiliations
    Surgical Outcomes Quality Improvement Center, Northwestern University Feinberg School of Medicine, Chicago, Illinois
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  • Willemijn Schäfer
    Affiliations
    Surgical Outcomes Quality Improvement Center, Northwestern University Feinberg School of Medicine, Chicago, Illinois
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  • Jane L. Holl
    Affiliations
    Biological Sciences Division, University of Chicago, Chicago, Illinois
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  • Mehul V. Raval
    Correspondence
    Corresponding author. Ann & Robert H. Lurie Children's Hospital of Chicago, 225 E Chicago Avenue, Box 63, Chicago, IL 60611. Tel.: +1 312 227 4210.
    Affiliations
    Surgical Outcomes Quality Improvement Center, Northwestern University Feinberg School of Medicine, Chicago, Illinois

    Division of Pediatric Surgery, Department of Surgery, Northwestern University Feinberg School of Medicine, Ann & Robert H. Lurie Children's Hospital, Chicago, Illinois
    Search for articles by this author
Published:October 14, 2022DOI:https://doi.org/10.1016/j.jss.2022.09.020

      Abstract

      Introduction

      Alignment between pediatric patients and caregiver perspectives on patient-reported outcome (PRO) data is contingent upon context. We aimed to assess agreement between patient and caregiver responses to a series of perioperative domains.

      Methods

      Agreement between pediatric patients and caregiver responses to preoperative and postoperative surveys about surgery preparedness, perioperative expectations, PRO Measurement Information System (PROMIS) measures for overall health and pain, and reaching milestones gathered as part of an ongoing clinical trial for children undergoing gastrointestinal surgery, was evaluated. Gwet's AC and Spearman's correlation coefficients were calculated, as appropriate, to assess agreement.

      Results

      Of 209 enrolled patients, 65 (31.1%) dyads completed all three surveys and were included. For the domains of education, expectations, and comprehension, patients and caregivers had good agreement with Gwet AC1 with values of 0.80, 0.61, and 0.64, respectively. For milestones, patients and caregivers had very good agreement (Gwet AC1 of 0.95). Milestones measured whether patients achieved certain goals within a prespecified time, including enteral intake (Gwet AC1 0.91 and 0.92 respectively), transition to oral pain medication (Gwet AC1 0.94), ambulation (Gwet AC1 1.00), and return of bowel function (Gwet AC1 0.97). There was moderate to strong agreement between patients and caregivers on PROMIS pain questions (Spearman's correlation: 0.71 preoperatively and 0.51 postoperatively). On PROMIS global health questions, there was strong agreement (0.69 preoperatively and 0.65 postoperatively).

      Conclusions

      Pediatric patient and caregiver agreement on perioperative survey items ranged from moderate to strong. Caregivers’ responses may be acceptable when some patient-level responses are not available.

      Keywords

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      References

        • Deshpande P.R.
        • Rajan S.
        • Sudeepthi B.L.
        • Nazir C.P.A.
        Patient-reported outcomes: a new era in clinical research.
        Perspect Clin Res. 2011; 2: 137-144
        • Bilimoria K.Y.
        • Cella D.
        • Butt Z.
        Current challenges in using patient-reported outcomes for surgical care and performance measurement: everybody wants to hear from the patient, but are we ready to listen?.
        JAMA Surg. 2014; 149: 505-506
        • Reeve B.B.
        • Edwards L.J.
        • Jaeger B.C.
        • et al.
        Assessing responsiveness over time of the PROMIS pediatric symptom and function measures in cancer, nephrotic syndrome, and sickle cell disease.
        Qual Life Res. 2018; 27: 249-257
        • Birnie K.A.
        • Richardson P.A.
        • Rajagopalan A.V.
        • Bhandari R.P.
        Factors related to agreement between child and caregiver report of child functioning with chronic pain: PROMIS pediatric and parent proxy report.
        Clin J Pain. 2019; 36: 203-212
        • Irwin D.E.
        • Gross H.E.
        • Stucky B.D.
        • et al.
        Development of six PROMIS pediatrics proxy-report item banks.
        Health Qual Life Outcomes. 2012; 10: 22
        • Varni J.W.
        • Thissen D.
        • Stucky B.D.
        • et al.
        PROMIS® Parent Proxy Report Scales: an item response theory analysis of the parent proxy report item banks.
        Qual Life Res. 2012; 21: 1223
        • Chambers C.T.
        • Giesbrecht K.
        • Craig K.D.
        • Bennett S.M.
        • Huntsman E.
        A comparison of faces scales for the measurement of pediatric pain: children’s and parents’ ratings.
        Pain. 1999; 83: 25-35
        • Chambers C.T.
        • Reid G.J.
        • Craig K.D.
        • McGrath P.J.
        • Finley G.A.
        Agreement between child and parent reports of pain.
        Clin J Pain. 1998; 14: 336-342
        • Garcia-Munitis P.
        • Bandeira M.
        • Pistorio A.
        • et al.
        Level of agreement between children, parents, and physicians in rating pain intensity in juvenile idiopathic arthritis.
        Arthritis Rheum. 2006; 55: 177-183
        • Palermo T.M.
        • Zebracki K.
        • Cox S.
        • Newman A.J.
        • Singer N.G.
        Juvenile idiopathic arthritis: parent-child discrepancy on reports of pain and disability - PubMed.
        J Rheumatol. 2004; 9: 1840-1846
        • Zhou H.
        • Roberts P.
        • Horgan L.
        Association between self-report pain ratings of child and parent, child and nurse and parent and nurse dyads: meta-analysis.
        J Adv Nurs. 2008; 63: 334-342
        • Upton P.
        • Lawford J.
        • Eiser C.
        Parent–child agreement across child health-related quality of life instruments: a review of the literature.
        Qual Life Res. 2008; 17: 895-913
        • Raval M.V.
        • Wymore E.
        • Ingram M.C.E.
        • Tian Y.
        • Johnson J.K.
        • Holl J.L.
        Assessing effectiveness and implementation of a perioperative enhanced recovery protocol for children undergoing surgery: study protocol for a prospective, stepped-wedge, cluster, randomized, controlled clinical trial.
        Trials. 2020; 21: 926
      1. Agreement analysis (categorical data, Kappa, Maxwell, Scott Pi, Gwet AC1) - StatsDirect.
        (Available at:)
        • Fleiss J.L.
        • Levin B.
        • Cho Paik M.
        Statistical Methods for Rates and Proportions.
        3rd ed. Wiley Series in Probability and Statistics. John Wiley & Sons, Inc, Hoboken, NJ2003
      2. Spearman’s correlation. Available at: chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.statstutor.ac.uk/resources/uploaded/spearmans.pdf. Accessed January 17, 2022.

        • Schanberg L.E.
        • Gil K.M.
        • Anthony K.K.
        • Yow E.
        • Rochon J.
        Pain, stiffness, and fatigue in juvenile polyarticular arthritis: contemporaneous stressful events and mood as predictors.
        Arthritis Rheum. 2005; 52: 1196-1204
        • Anthony K.K.
        • Schanberg L.E.
        Pain in children with arthritis: a review of the current literature.
        Arthritis Care Res (Hoboken). 2003; 49: 272-279