Development and Pilot Testing a Self-Reported Pediatric PROMIS App for Young Children Aged 5–7 Years

      Highlights

      • Parent reports cannot be substituted for child reports.
      • If an age-appropriate instrument was provided, young children also could report their own perception of health.
      • This smartphone application and its Web-based administration portal demonstrate good usability.
      • This animated application can be used as a smart measurement to investigate the symptoms for young children aged 5–7 years.

      Abstract

      Purpose

      The aims of this study are threefold. Firstly, Using the state of science PROMIS (Patient-Reported Outcomes Measurement Information System) methods to develop a smartphone application to monitor the emotional distress for young children aged 5–7 years old; Secondly, to test the usability of this application; and thirdly, to determine the level of agreement between reports by parents and young children's self-report.

      Design and methods

      A multidisciplinary research team, made up of senior pediatric nurses and doctors, software engineers' team, and pediatric health researchers worked together to develop this application. Three phases of stakeholders and user studies were conducted. Phase 1 focused on prototype development; Phase 2 involved cognitive interview and usability testing; Phases 3 focused on the pilot testing of this application.

      Results

      We included the original parent proxy reporting version of Patient Reported Outcome Measurement Information System-emotional distress in the application, as well as self-reporting animated version for young children. After many rounds of modification, all participants felt that this application was easy to use and the animated items were easy to understand for young children aged 5–7 years. Correlations between parents-children reports are significant and moderate, parents underestimated child depression, and overestimated child anger and anxiety compared to child self-report.

      Conclusions

      This smartphone application and its Web-based administration portal demonstrate good usability and are well accepted by young children aged 5–7 years, which can be used to promote young children's participation when reporting or assessing symptoms of young pediatric patients.

      Practice implications

      Parent reports cannot be substituted for child reports and evaluations of pediatric patients' perspectives regarding treatment outcomes should be included in pediatric clinic. This animated application can be used as a smart measurement to investigate the symptoms for young children aged 5–7 years, so as to amplify young children's voice in clinical care.

      Keywords

      To read this article in full you will need to make a payment

      References

        • Bevans K.B.
        • Gardner W.
        • Pajer K.
        • Riley A.W.
        • Forrest C.B.
        Qualitative development of the PROMIS pediatric stress response item banks.
        Journal of Pediatric Psychology. 2013; 38: 173-191https://doi.org/10.1093/jpepsy/jss107
        • Bilancia S.D.
        • Rescorla L.
        Stability of behavioral and emotional problems over 6 years in children ages 4 to 5 or 6 to 7 at time 1.
        Journal of Emotional and Behavioral Disorders. 2010; 18: 149-161https://doi.org/10.1177/1063426609344865
        • Blandon A.Y.
        • Calkins S.D.
        • Keane S.P.
        • O’Brien M.
        Individual differences in trajectories of emotion regulation processes: The effects of maternal depressive symptomatology and children’s physiological regulation.
        Developmental Psychology. 2008; 44: 1110-1123https://doi.org/10.1037/0012-1649.44.4.1110
        • Cella D.
        • Riley W.
        • Stone A.
        • Rothrock N.
        • Reeve B.
        • Yount S.
        • Hays R.
        Initial adult health item banks and first wave testing of the patient-reported outcomes measurement information system (PROMIS) network: 2005–2008.
        Journal of Clinical Epidemiology. 2010; 63: 1179-1194https://doi.org/10.1016/j.jclinepi.2010.04.011
        • Cella D.
        • Yount S.
        • Rothrock N.
        • Gershon R.
        • Cook K.
        • Reeve B.
        • Rose M.
        The patient-reported outcomes measurement information system (PROMIS): Progress of an NIH roadmap cooperative group during its first two years.
        Medical Care. 2007; 45: S3-S11https://doi.org/10.1097/01.mlr.0000258615.42478.55
        • Chang P.C.
        • Yeh C.H.
        Agreement between child self-report and parent by proxy-report to evaluate QOL in children with cancer.
        Psycho-oncology. 2005; 14: 125-134https://doi.org/10.1002/pon.828
        • Cremeens J.
        • Eiser C.
        • Blades M.
        Characteristics of health-related self-report measures for children aged three to eight years: A review of the literature.
        Quality of Life Research. 2006; 15: 739-754https://doi.org/10.1007/s11136-005-4184-x
        • Cremeens J.
        • Eiser C.
        • Blades M.
        Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory 4.0 (Peds QLTM) generic core scales.
        Health and Quality of Life Outcomes. 2006; 4: 58https://doi.org/10.1186/1477-7525-4-58
        • DeWalt D.A.
        • Rothrock N.
        • Yount S.
        • Stone A.A.
        Evaluation of item candidates: The PROMIS qualitative item review.
        Medical Care. 2007; 45 (Retrieved February 21, 2020, from): S12-S21
        • Drennan J.
        Cognitive interviewing: Verbal data in the design and pretesting of questionnaire.
        Journal of Advanced Nursing. 2003; 42: 57-63https://doi.org/10.1046/j.1365-2648.2003.02579.x
        • Eiser C.
        • Morse R.
        Can parents rate their child’s health-related quality of life? Results from a systematic review.
        Quality of Life Research. 2001; 10: 347-357https://doi.org/10.1023/a:1012253723272
        • Furniss T.
        • Beyer T.
        • Müller J.M.
        Impact of life events on child mental health before school entry at age six.
        European Child & Adolescent Psychiatry. 2009; 18: 717-724https://doi.org/10.1007/s00787-009-0013-z
        • Grills A.E.
        • Ollendick T.H.
        Issues in parent-child agreement: The case of structured diagnostic interviews.
        Clinical Child and Family Psychology Review. 2002; 5: 57-83https://doi.org/10.1023/A:1014573708569
        • Jefferson U.T.
        • Zachary I.
        • Majee W.
        Employing a user-centered design to engage mothers in the development of a mHealth breastfeeding application.
        Computers, Informatics, Nursing. 2019; 37: 522-531https://doi.org/10.1097/CIN.0000000000000549
        • Johnston C.A.
        • Steele R.G.
        • Herrera E.A.
        • Phipps S.
        Parent and child reporting of negative life events: Discrepancy and agreement across pediatric samples.
        Journal of Pediatric Psychology. 2003; 28: 579-588https://doi.org/10.1093/jpepsy/jsg048
        • Kazdin A.E.
        • French N.H.
        • Unis A.S.
        Child, mother, and father evaluations of depression in psychiatric inpatient children.
        Journal of Abnormal Child Psychology. 1983; 11: 167-179https://doi.org/10.1007/BF00912083
        • Lagattuta K.H.
        Thinking about the future because of the past: Young children’s knowledge about the causes of worry and preventative decisions.
        Child Development. 2007; 78: 1492-1509https://doi.org/10.1111/j.1467-8624.2007.01079.x
        • Lagattuta K.H.
        • Sayfan L.
        • Bamford C.
        Do you know how I feel? Parents underestimate worry and overestimate optimism compared to child self-report.
        Journal of Experimental Child Psychology. 2012; 113: 211-232https://doi.org/10.1016/j.jecp.2012.04.001
        • Levine L.J.
        • Stein N.L.
        • Liwag M.D.
        Remembering children’s emotions: Sources of concordant and discordant accounts between parents and children.
        Developmental Psychology. 1999; 35: 790-801https://doi.org/10.1037/0012-1649.35.3.790
        • Liu Y.
        • Hinds P.S.
        • Wang J.
        • Correia H.
        • Du S.
        • Ding J.
        • Yuan C.
        Translation and linguistic validation of the Pediatric Patient-Reported Outcomes Measurement Information System measures into simplified Chinese using cognitive interviewing methodology.
        Cancer Nursing. 2013; 36: 368-376https://doi.org/10.1097/NCC.0b013e3182962701
        • Liu Y.
        • Wang J.
        • Hinds P.S.
        • Wang J.
        • Shen N.
        • Zhao X.
        • Yuan C.
        • et al.
        The emotional distress of children with cancer in China: An item response analysis of C-Ped-PROMIS Anxiety and Depression short forms.
        Quality of Life Research. 2015; 24: 1491-1501https://doi.org/10.1007/s11136-014-0870-x
        • Palmer S.N.
        • Meeske K.A.
        • Katz E.R.
        • Burwinkle T.M.
        • Varni J.W.
        The Peds QL brain tumor module: Initial reliability and validity.
        Pediatric Blood and Cancer. 2007; 49: 287-293https://doi.org/10.1002/pbc.21026
        • Reyes A.D.L.
        • Kazdin A.E.
        Informant discrepancies in the assessment of childhood psychopathology: A critical review, theoretical framework, and recommendations for further study.
        Psychological Bulletin. 2005; 131: 483-509https://doi.org/10.1037/0033-2909.131.4.483
        • Sayfan L.
        • Lagattuta K.H.
        Grownups are not afraid of scary stuff, but kids are: Young children’s and adults’ reasoning about children’s, infants’, and adults’ fears.
        Child Development. 2008; 79: 821-835https://doi.org/10.1111/j.1467-8624.2008.01161.x
        • Theunissen N.C.
        • Vogels T.G.
        • Koopman H.M.
        • Verrips G.H.
        • Zwinderman K.A.
        • Verloove-Vanhorick S.P.
        • Wit J.M.
        The proxy problem: Child report versus parent report in health-related quality of life research.
        Quality of Life Research. 1998; 7: 387-397https://doi.org/10.1023/a:1008801802877
        • Thompson R.A.
        • Lagattuta K.H.
        Feeling and understanding: Early emotional development.
        in: McCartney K. Phillips D. The Blackwell handbook of early childhood development. Blackwell, Oxford2006: 317-337https://doi.org/10.1002/9780470757703.ch16
        • Tucker C.A.
        • Bevans K.B.
        • Teneralli R.E.
        • Smith A.W.
        • Bowles H.R.
        • Forrest C.B.
        Self-reported pediatric measures of physical activity, sedentary behavior, and strength impact for PROMIS: Item development.
        Pediatric Physical Therapy. 2014; 26: 385-392
        • Varni J.W.
        • Bernstein B.H.
        Evaluation and management of pain in children with rheumatic diseases.
        Rheumatic Disease Clinics of North America. 1991; 17: 985-1000https://doi.org/10.1177/096120339100100109
        • Varni J.W.
        • Limbers C.
        • Burwinkle T.M.
        Literature review: Health-related quality of life measurement in pediatric oncology: Hearing the voices of the children.
        Journal of Pediatric Psychology. 2007; 32: 1151-1163https://doi.org/10.1093/jpepsy/jsm008
        • Varni J.W.
        • Seid M.
        • Knight T.S.
        • Uzark K.
        • Szer I.S.
        The PedsQLTM 4.0 Generic Core Scales: Sensitivity, responsiveness, and impact on clinical decision-making.
        Journal of Behavioral Medicine. 2002; 25: 175-193https://doi.org/10.1023/A:1014836921812
        • Varni J.W.
        • Thompson K.L.
        • Hanson V.
        The Varni/Thompson Pediatric Pain Questionnaire. I. Chronic musculoskeletal pain in juvenile rheumatoid arthritis.
        Pain. 1987; 28 (91056-6): 27-38https://doi.org/10.1016/0304-3959(87
        • Willis G.B.
        Cognitive interviewing a tool for improving questionnaire design.
        Sage Publications, Thousand Oaks, CA2005
        • Yeh C.H.
        • Chang C.W.
        • Chang P.C.
        Evaluating quality of life in children with cancer using children’s self-reports and parent-proxy reports.
        Nursing Research. 2005; 54: 354-362https://doi.org/10.1097/00006199-200509000-00010