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Assessing the engagement of children and families in selecting patient-reported outcomes (PROs) and develo** their measures: a systematic review

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Abstract

Purpose

To assess child and family engagement in the selection of patient-reported outcomes for clinical studies/clinical settings and development of patient-reported outcome measures (PROMs)/patient-reported experience measures (PREMs) across the pediatric literature.

Methods

Databases were reviewed: EMBASE, MEDLINE, and PsycINFO. Articles published from December 2009 to September 2018 pertaining to the selection of outcomes or development of PROMs/PREMs for children or families were included. The International Association for Public Participation (IAP2) Spectrum of Public Participation was used to classify levels of engagement across each article; IAP2 plots engagement on a spectrum across five stages (from minimal to most engagement): Inform, Consult, Involve, Collaborate, and Empower.

Results

9019 non-duplicate articles were screened; 36 articles met inclusion criteria, seven studies focused on the selection of outcomes, and 29 studies pertained to PROM/PREM development. Twenty-three articles adhered to ‘Involve’ level of engagement. Four articles were categorized as ‘Collaborate,’ seven articles were classified as ‘Consult,’ and three articles were categorized as ‘Inform’.

Conclusion

Children and families were sparsely engaged as co-conductors or equal partners in the selection or development of PRO research; involvement remained on the mid-low end of the IAP2 Spectrum. Engaging with children and families as collaborators can improve the patient-centredness, rigour, and applicability of PROM/PREM research.

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References

  1. Braithwaite, J., Testa, L., Lamprell, G., Herkes, J., Ludlow, K., McPherson, E., et al. (2017). Built to last? The sustainability of health system improvements, interventions and change strategies: A study protocol for a systematic review. British Medical Journal Open, 7(11), e018568. https://doi.org/10.1136/bmjopen-2017-018568

    Article  Google Scholar 

  2. Thomson, S., Foubister, T., Figueras, J., Kutzin, J., Permanand, G., & Bryndová, L. (2009). Addressing financial sustainability in health systems. World Health Organization. Retrieved September 2020 from https://www.euro.who.int/__data/assets/pdf_file/0018/76041/E93058.pdf.

  3. Serebrisky, D., & Wiznia, A. (2019). Pediatric asthma: A global epidemic. Annals of Global Health, 85(1), 6. https://doi.org/10.5334/aogh.2416

    Article  PubMed  PubMed Central  Google Scholar 

  4. Cohen, E., & Patel, H. (2014). Responding to the rising number of children living with complex chronic conditions. Canadian Medical Association Journal, 186(16), 1199–1200. https://doi.org/10.1503/cmaj.141036

    Article  PubMed  Google Scholar 

  5. Male, L., Noble, A., Atkinson, J., & Marson, T. (2017). Measuring patient experience: A systematic review to evaluate psychometric properties of patient reported experience measures (PREMs) for emergency care service provision. International Journal for Quality in Health Care: Journal of the International Society for Quality in Health Care, 29(3), 314–326. https://doi.org/10.1093/intqhc/mzx027

    Article  Google Scholar 

  6. Allard, A., Fellowes, A., Shilling, V., Janssens, A., Beresford, B., & Morris, C. (2014). Key health outcomes for children and young people with neurodisability: Qualitative research with young people and parents. British Medical Journal Open, 4, 1–11. https://doi.org/10.1136/bmjopen-2013-004611

    Article  Google Scholar 

  7. Morris, C., Janssens, A., Shilling, V., Allard, A., Fellowes, A., Tomlinson, R., et al. (2015). Meaningful health outcomes for paediatric neurodisability: Stakeholder prioritisation and appropriateness of patient reported outcome measures. Health and Quality of Life Outcomes, 13, 87. https://doi.org/10.1186/s12955-015-0284-7

    Article  PubMed  PubMed Central  Google Scholar 

  8. Bevans, K. B., Moon, J., Becker, B. D., Carle, A., & Forrest, C. B. (2020). Development of patient-reported outcome measures of children’s oral health aesthetics. Community Dentistry and Oral Epidemiology, 48(5), 423–432. https://doi.org/10.1111/cdoe.12555

    Article  PubMed  Google Scholar 

  9. Sinha, I., Jones, L., Smyth, R. L., & Williamson, P. R. (2008). A systematic review of studies that aim to determine which outcomes to measure in clinical trials in children. PLoS Medicine, 5(4), e96. https://doi.org/10.1371/journal.pmed.0050096

    Article  PubMed  PubMed Central  Google Scholar 

  10. Edbrooke-childs, J., Wolpert, M., & Deighton, J. (2016). Using patient reported outcome measures to improve service effectiveness (UPROMISE): Training clinicians to use outcome measures in child mental health. Administration and Policy in Mental Health and Mental Health Services Research, 43(3), 302–308. https://doi.org/10.1007/s10488-014-0600-2

    Article  PubMed  Google Scholar 

  11. Fayed, N., de Camargo, O. K., Elahi, I., Dubey, A., Fernandes, R. M., Houtrow, A., et al. (2014). Patient-important activity and participation outcomes in clinical trials involving children with chronic conditions. Quality of Life Research, 23(3), 751–757. https://doi.org/10.1007/s11136-013-0483-9

    Article  PubMed  Google Scholar 

  12. Jain, P., Smith, M. L., Speechley, K., Ferro, M., Connolly, M., Ramachandrannair, R., et al. (2020). Seizure freedom improves health-related quality of life after epilepsy surgery in children. Developmental Medicine & Child Neurology, 62(5), 600–608.

    Article  Google Scholar 

  13. Fortunato, J. E., Troy, A. L., Cuffari, C., Davis, J. E., Loza, M. J., Oliva-Hemker, M., et al. (2010). Outcome after percutaneous endoscopic gastrostomy in children and young adults. Journal of Pediatric Gastroenterology and Nutrition, 50(4), 390–393.

    Article  Google Scholar 

  14. Mahant, S., Friedman, J. N., Connolly, B., Goia, C., & Macarthur, C. (2009). Tube feeding and quality of life in children with severe neurological impairment. Archives of Disease in Childhood, 94(9), 668–673.

    Article  CAS  Google Scholar 

  15. Nelson, K. E., Rosella, L. C., Mahant, S., Cohen, E., & Guttmann, A. (2019). Survival and health care use after feeding tube placement in children with neurologic impairment. Pediatrics, 143(2), e20182863.

    Article  Google Scholar 

  16. Roth, J., Carlson, C., Devinsky, O., Harter, D. H., MacAllister, W. S., & Weiner, H. L. (2014). Safety of staged epilepsy surgery in children. Neurosurgery, 74(2), 154–162. https://doi.org/10.1227/NEU.0000000000000231

    Article  PubMed  Google Scholar 

  17. Marshall, S., Haywood, K., & Fitzpatrick, R. (2006). Impact of patient-reported outcome measures on routine practice: A structured review. Journal of Evaluation in Clinical Practice, 12(5), 559–568. https://doi.org/10.1111/j.1365-2753.2006.00650.x

    Article  PubMed  Google Scholar 

  18. Stover, A. M., Haverman, L., van Oers, H. A., Greenhalgh, J., Potter, C. M., Ahmed, S., et al. (2020). Using an implementation science approach to implement and evaluate patient-reported outcome measures (PROM) initiatives in routine care settings. Quality of Life Research. https://doi.org/10.1007/s11136-020-02564-9

    Article  PubMed  Google Scholar 

  19. Fayed, N., Gardecki, M., & Cohen, E. (2018). Partnering with families of children with medical complexity to evaluate interventions. Canadian Medical Association Journal. https://doi.org/10.1503/cmaj.180372

    Article  PubMed  Google Scholar 

  20. Janvier, A., Farlow, B., Baardsnes, J., Pearce, R., & Barrington, K. J. (2016). Measuring and communicating meaningful outcomes in neonatology: A family perspective. In Seminars in perinatology (Vol. 40, No. 8, pp. 571–577). Philadelphia: WB Saunders.

  21. Fayed, N. (2011). Content issues in child health status and quality of life instruments: Addressing the challenges with new methods (Doctoral dissertation).

  22. Rosenbaum, P. L., Livingston, M. H., Palisano, R. J., Galuppi, B. E., & Russell, D. J. (2007). Quality of life and health-related quality of life of adolescents with cerebral palsy. Developmental Medicine & Child Neurology, 49(7), 516–521.

    Article  Google Scholar 

  23. Raphael, D., Brown, I., Renwick, R., & Rootman, I. (1996). Assessing the quality of life of persons with developmental disabilities: Description of a new model, measuring instruments, and initial findings. International Journal of Disability, Development and Education, 43(1), 25–42. https://doi.org/10.1080/0156655960430103

    Article  Google Scholar 

  24. Crudgington, H., Collingwood, A., Bray, L., Lyle, S., Martin, R., Gringras, P., et al. (2020). Map** epilepsy-specific patient-reported outcome measures for children to a proposed core outcome set for childhood epilepsy. Epilepsy & Behavior, 112, 107372.

    Article  Google Scholar 

  25. Morris, C., Simkiss, D., Busk, M., Morris, M., Allard, A., Denness, J., et al. (2015). Setting research priorities to improve the health of children and young people with neurodisability: A British Academy of Childhood Disability-James Lind Alliance Research Priority Setting Partnership. British Medical Journal Open, 5(1), e006233. https://doi.org/10.1136/bmjopen-2014-006233

    Article  Google Scholar 

  26. U.S. Department of Health and Human Services Food and Drug Administration. (2009). Guidance for industry patient-reported outcome measures: Use in medical product development to support labeling claims. Rockville: U.S. Department of Health and Human Services Food and Drug Administration.

    Google Scholar 

  27. European Medicines Agency. (2005). Regulatory guidance for the use of health-related quality of life (Hrql) measures in the evaluation of medicinal products reproduction. Amsterdam: European Medicines Agency.

    Google Scholar 

  28. International Association for Public Participation. (2004). Public participation spectrum. Retrieved September 2018 from https://iap2canada.ca/Resources/Documents/0702-Foundations-Spectrum-MW-rev2%20(1).pdf.

  29. Frank, L., Forsythe, L., Ellis, L., Schrandt, S., Sheridan, S., Gerson, J., et al. (2015). Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute. Quality of Life Research, 24(5), 1033–1041.

    Article  Google Scholar 

  30. Esposito, D., Heeringa, J., Bradley, K., Croake, S., & Kimmey, L. (2015). PCORI dissemination and implementation framework. MATHEMATICA Policy Research. Washington, DC, US. Retrieved from http://pcori.org/sites/default/files/PCORI-Dissemination-Implementation-Framework.pdf.

  31. Frank, L., Basch, E., & Selby, J. (2014). Viewpoint: The PCORI perspective on patient-centered outcomes research. Journal of the American Medical Association, 312(15), 1513–1514.

    Article  CAS  Google Scholar 

  32. Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group. (2009). Preferred reporting items for systematic reviews and meta-analyses: The PRISMA Statement. PLoS Medicine, 6(7), e1000097. https://doi.org/10.1371/journal.pmed.1000097

    Article  Google Scholar 

  33. Covidence. (2020). Retrieved September 2018 from, https://www.covidence.org/about-us/.

  34. Arbuckle, R., Abetz, L., Durmer, J. S., Ivanenko, A., Owens, J. A., Croenlein, J., et al. (2010). Development of the Pediatric Restless Legs Syndrome Severity Scale (P-RLS-SS): A patient-reported outcome measure of pediatric RLS symptoms and impact. Sleep Medicine, 11(9), 897–906. https://doi.org/10.1016/j.sleep.2010.03.016

    Article  PubMed  Google Scholar 

  35. Basra, M. K. A., Salek, M. S., Fenech, D., & Finlay, A. Y. (2018). Conceptualization, development and validation of T-QoL© (Teenagers’ Quality of Life): A patient-focused measure to assess quality of life of adolescents with skin diseases. The British Journal of Dermatology, 178(1), 161–175. https://doi.org/10.1111/bjd.15853

    Article  CAS  PubMed  Google Scholar 

  36. Bemister, T. B., Brooks, B. L., & Kirton, A. (2014). Development, reliability, and validity of the Alberta Perinatal Stroke Project Parental Outcome Measure. Pediatric Neurology, 51(1), 43–52. https://doi.org/10.1016/j.pediatrneurol.2014.01.052

    Article  PubMed  Google Scholar 

  37. Bevans, K. B., Gardner, W., Pajer, K., Riley, A. W., & Forrest, C. B. (2013). Qualitative development of the PROMIS(R) pediatric stress response item banks. Journal of Pediatric Psychology, 38(2), 173–191. https://doi.org/10.1093/jpepsy/jss107

    Article  PubMed  Google Scholar 

  38. Bramhagen, A.-C., Eriksson, M., Ericsson, E., Nilsson, U., Harden, S., & Idvall, E. (2016). Self-reported post-operative recovery in children: Development of an instrument. Journal of Evaluation in Clinical Practice, 22(2), 180–188. https://doi.org/10.1111/jep.12451

    Article  PubMed  Google Scholar 

  39. Caty, G., Gilles, C., Arnould, C., Thonnard, J. L., & Lejuene, T. (2008). ABILOCO-Kids: A Rasch-built 10-item questionnaire for assessing locomotion ability in children with cerebral palsy. Journal of Rehabilitation Medicine, 40(10), 823–830.

    Article  Google Scholar 

  40. Chang, K. W., Austin, A., Yeaman, J., Phillips, L., Kratz, A., Yang, L., et al. (2017). Health-related quality of life components in children with neonatal brachial plexus palsy: A qualitative study. PM&R, 9(4), 383–391.

    Article  Google Scholar 

  41. Chien, C.-W., Rodger, S., & Copley, J. (2015). Development and psychometric evaluation of a new measure for children’s participation in hand-use life situations. Archives of Physical Medicine and Rehabilitation, 96(6), 1045–1055. https://doi.org/10.1016/j.apmr.2014.11.013

    Article  PubMed  Google Scholar 

  42. de Kleuver, M., Faraj, S., Holewijn, R. M., Germscheid, N. M., Adobor, R. D., Andersen, M., et al. (2017). Defining a core outcome set for adolescent and young adult patients with a spinal deformity. Acta Orthopaedica, 88(6), 612–618. https://doi.org/10.1080/17453674.2017.1371371

    Article  PubMed  PubMed Central  Google Scholar 

  43. Dickin, K. L., Lent, M., Lu, A. H., Sequeira, J., & Dollahite, J. S. (2012). Develo** a measure of behavior change in a program to help low-income parents prevent unhealthful weight gain in children. Journal of Nutrition Education and Behavior, 44(1), 12–21. https://doi.org/10.1016/j.jneb.2011.02.015

    Article  PubMed  Google Scholar 

  44. Doi, T., Inoue, H., Arai, Y., Shirado, O., Doi, T., Yamazaki, K., et al. (2018). Reliability and validity of a novel quality of life questionnaire for female patients with adolescent idiopathic scoliosis: Scoliosis Japanese Questionnaire-27: A multicenter, cross-sectional study. BMC Musculoskeletal Disorders, 19(1), 99. https://doi.org/10.1186/s12891-018-2025-7

    Article  PubMed  PubMed Central  Google Scholar 

  45. Dyson, M. P., Shave, K., Gates, A., Fernandes, R. M., Scott, S. D., & Hartling, L. (2017). Which outcomes are important to patients and families who have experienced paediatric acute respiratory illness? Findings from a mixed methods sequential exploratory study. British Medical Journal Open, 7(12), e018199. https://doi.org/10.1136/bmjopen-2017-018199

    Article  Google Scholar 

  46. Eapen, V., Crncec, R., Walter, A., & Tay, K. P. (2014). Conceptualisation and development of a quality of life measure for parents of children with autism spectrum disorder. Autism Research and Treatment, 2014(101576459), 160783. https://doi.org/10.1155/2014/160783

    Article  PubMed  PubMed Central  Google Scholar 

  47. Fabricant, P. D., Robles, A., Downey-Zayas, T., Do, H. T., Marx, R. G., Widmann, R. F., et al. (2013). Development and validation of a pediatric sports activity rating scale: The Hospital for Special Surgery Pediatric Functional Activity Brief Scale (HSS Pedi-FABS). The American Journal of Sports Medicine, 41(10), 2421–2429. https://doi.org/10.1177/0363546513496548

    Article  PubMed  Google Scholar 

  48. Fiume, A., Deveber, G., Jang, S.-H., Fuller, C., Viner, S., & Friefeld, S. (2018). Development and validation of the Pediatric Stroke Quality of Life Measure. Developmental Medicine and Child Neurology, 60(6), 587–595. https://doi.org/10.1111/dmcn.13684

    Article  PubMed  Google Scholar 

  49. Franciosi, J. P., Hommel, K. A., DeBrosse, C. W., Greenberg, A. B., Greenler, A. J., Abonia, J. P., et al. (2012). Quality of life in paediatric eosinophilic oesophagitis: What is important to patients? Child: Care Health and Development, 38(4), 477–483. https://doi.org/10.1111/j.1365-2214.2011.01265.x

    Article  CAS  Google Scholar 

  50. Geister, T. L., Quintanar-Solares, M., Martin, M., Aufhammer, S., & Asmus, F. (2014). Qualitative development of the “Questionnaire on Pain caused by Spasticity (QPS)”, a pediatric patient-reported outcome for spasticity-related pain in cerebral palsy. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 23(3), 887–896. https://doi.org/10.1007/s11136-013-0526-2

    Article  Google Scholar 

  51. Gore, C., Griffin, R., Rothenberg, T., Tallett, A., Hopwood, B., Sizmur, S., et al. (2016). New patient-reported experience measure for children with allergic disease: Development, validation and results from integrated care. Archives of Disease in Childhood, 101(10), 935–943. https://doi.org/10.1136/archdischild-2015-309598

    Article  CAS  PubMed  Google Scholar 

  52. Heyworth, B., Cohen, L., von Heideken, J., Kocher, M. S., & Iversen, M. D. (2018). Validity and comprehensibility of outcome measures in children with shoulder and elbow disorders: Creation of a new Pediatric and Adolescent Shoulder and Elbow Survey (Pedi-ASES). Journal of Shoulder and Elbow Surgery, 27(7), 1162–1171. https://doi.org/10.1016/j.jse.2017.11.009

    Article  PubMed  Google Scholar 

  53. Klingels, K., Mayhew, A. G., Mazzone, E. S., Duong, T., Decostre, V., Werlauff, U., et al. (2017). Development of a patient-reported outcome measure for upper limb function in Duchenne muscular dystrophy: DMD Upper Limb PROM. Developmental Medicine and Child Neurology, 59(2), 224–231. https://doi.org/10.1111/dmcn.13277

    Article  CAS  PubMed  Google Scholar 

  54. Kramer, J. M., & Schwartz, A. E. (2018). Development of the Pediatric Disability Inventory-Patient Reported Outcome (PEDI-PRO) measurement conceptual framework and item candidates. Scandinavian Journal of Occupational Therapy, 25(5), 335–346. https://doi.org/10.1080/11038128.2018.1502344

    Article  PubMed  PubMed Central  Google Scholar 

  55. Liu, H., Hays, R. D., Marcus, M., et al. (2016). Patient-reported oral health outcome measurement for children and adolescents. BMC Oral Health, 16, 95.

    Article  Google Scholar 

  56. Morris, C., Dunkley, C., Gibbon, F. M., Currier, J., Roberts, D., Rogers, M., et al. (2017). Core health outcomes in childhood epilepsy (CHOICE): Protocol for the selection of a core outcome set. Trials, 18(1), 572. https://doi.org/10.1186/s13063-017-2323-7

    Article  PubMed  PubMed Central  Google Scholar 

  57. Newcombe, P. A., Sheffield, J. K., Petsky, H. L., Marchant, J. M., Willis, C., & Chang, A. B. (2016). A child chronic cough-specific quality of life measure: Development and validation. Thorax, 71(8), 695–700. https://doi.org/10.1136/thoraxjnl-2015-207473

    Article  PubMed  Google Scholar 

  58. Oluboyede, Y., Hulme, C., & Hill, A. (2017). Development and refinement of the WAItE: A new obesity-specific quality of life measure for adolescents. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 26(8), 2025–2039. https://doi.org/10.1007/s11136-017-1561-1

    Article  Google Scholar 

  59. O’Sullivan, E. J., & Rasmussen, K. M. (2017). Development, construct validity, and reliability of the questionnaire on infant feeding: A tool for measuring contemporary infant-feeding behaviors. Journal of the Academy of Nutrition and Dietetics, 117(12), 1983-1990.e1984. https://doi.org/10.1016/j.jand.2017.05.006

    Article  PubMed  Google Scholar 

  60. Punpanich, W., Hays, R. D., Detels, R., Chokephaibulkit, K., Chantbuddhiwet, U., Leowsrisook, P., et al. (2011). Development of a culturally appropriate health-related quality of life measure for human immunodeficiency virus-infected children in Thailand. Journal of Paediatrics and Child Health, 47(1–2), 27–33. https://doi.org/10.1111/j.1440-1754.2010.01886.x

    Article  PubMed  Google Scholar 

  61. Roorda, L. D., Scholtes, V. A., van der Lee, J. H., Becher, J., & Dallmeijer, A. J. (2010). Measuring mobility limitations in children with cerebral palsy: Development, scalability, unidimensionality, and internal consistency of the mobility questionnaire, MobQues47. Archives of Physical Medicine and Rehabilitation, 91(8), 1194–1209. https://doi.org/10.1016/j.apmr.2010.05.009

    Article  PubMed  Google Scholar 

  62. Santucci, N. R., Hyman, P. E., Karpinski, A., Rosenberg, A., Garguilo, D., Rein, L. E., et al. (2018). Development and validation of a childhood self-efficacy for functional constipation questionnaire. Neurogastroenterology and Motility, 30(3), e13222.

    Article  Google Scholar 

  63. Shaikh, N., Martin, J. M., Casey, J. R., Pichichero, M. E., Wald, E. R., Colborn, D. K., et al. (2009). Development of a patient-reported outcome measure for children with streptococcal pharyngitis. Pediatrics, 124(4), e557-563. https://doi.org/10.1542/peds.2009-0331

    Article  PubMed  Google Scholar 

  64. Tadic, V., Cooper, A., Cumberland, P., Lewando-Hundt, G., Rahi, J. S., & Vision-related Quality of Life Group. (2013). Development of the functional vision questionnaire for children and young people with visual impairment: The FVQ_CYP. Ophthalmology, 120(12), 2725–2732. https://doi.org/10.1016/j.ophtha.2013.07.055

    Article  Google Scholar 

  65. Tsakos, G., Blair, Y., Yusuf, H., Wright, W., Watt, R., & Macpherson, L. (2012). Develo** a new self-reported scale of oral health outcomes for 5-year-old children (SOHO-5). Health and Quality of Life Outcomes, 10, 62.

    Article  Google Scholar 

  66. Verschuren, O., Ketelaar, M., Keefer, D., Wright, V., Butler, J., Ada, L., et al. (2011). Identification of a core set of exercise tests for children and adolescents with cerebral palsy: A Delphi survey of researchers and clinicians. Developmental Medicine and Child Neurology, 53(5), 449–456. https://doi.org/10.1111/j.1469-8749.2010.03899.x

    Article  PubMed  Google Scholar 

  67. Wray, J., Hobden, S., Knibbs, S., & Oldham, G. (2018). Hearing the voices of children and young people to develop and test a patient-reported experience measure in a specialist paediatric setting. Archives of Disease in Childhood, 103(3), 272–279. https://doi.org/10.1136/archdischild-2017-313032

    Article  PubMed  Google Scholar 

  68. Wright, W. G., Spiro, A., 3rd., Jones, J. A., Rich, S. E., & Garcia, R. I. (2017). Development of the teen oral health-related quality of life instrument. Journal of Public Health Dentistry, 77(2), 115–124. https://doi.org/10.1111/jphd.12181

    Article  PubMed  Google Scholar 

  69. Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL™: Measurement model for the pediatric quality of life inventory. Medical Care, 37, 126–139.

    Article  CAS  Google Scholar 

  70. Landgraf, J. M., Abetz, L., & Ware, J. E. (1999). Child health questionnaire (CHQ): A user’s manual. Boston, MA: Landgraf & Ware.

    Google Scholar 

  71. Berry, J. G., Graham, D. A., Graham, R. J., Zhou, J., Putney, H. L., O’Brien, J. E., et al. (2009). Predictors of clinical outcomes and hospital resource use of children after tracheotomy. Pediatrics, 124(2), 563–572.

    Article  Google Scholar 

  72. Eapen, V., Črnčec, R., & Walter, A. (2013). Clinical outcomes of an early intervention program for preschool children with Autism Spectrum Disorder in a community group setting. BMC Pediatrics. https://doi.org/10.1186/1471-2431-13-3

    Article  PubMed  PubMed Central  Google Scholar 

  73. Wilkinson, J. D., Lowe, A. M., Salbert, B. A., Sleeper, L. A., Colan, S. D., Cox, G. F., et al. (2012). Outcomes in children with Noonan syndrome and hypertrophic cardiomyopathy: A study from the Pediatric Cardiomyopathy Registry. American Heart Journal, 164(3), 442–448.

    Article  Google Scholar 

  74. Biederman, J., Monuteaux, M. C., Doyle, A. E., Seidman, L. J., Wilens, T. E., Ferrero, F., et al. (2004). Impact of executive function deficits and attention-deficit/hyperactivity disorder (ADHD) on academic outcomes in children. Journal of Consulting and Clinical Psychology, 72(5), 757–766. https://doi.org/10.1037/0022-006X.72.5.757

    Article  PubMed  Google Scholar 

  75. Langley, K., Fowler, T., Ford, T., Thapar, A. K., Van Den Bree, M., Harold, G., et al. (2010). Adolescent clinical outcomes for young people with attention-deficit hyperactivity disorder. The British Journal of Psychiatry, 196(3), 235–240.

    Article  Google Scholar 

  76. Wiering, B., de Boer, D., & Delnoij, D. (2017). Patient involvement in the development of patient-reported outcome measures: The developers’ perspective. BMC Health Services Research, 17(1), 635. https://doi.org/10.1186/s12913-017-2582-8

    Article  PubMed  PubMed Central  Google Scholar 

  77. Mader, L. B., Harris, T., Kläger, S., Wilkinson, I. B., & Hiemstra, T. F. (2018). Inverting the patient involvement paradigm: Defining patient led research. Research Involvement and Engagement, 4(1), 21. https://doi.org/10.1186/s40900-018-0104-4

    Article  PubMed  PubMed Central  Google Scholar 

  78. El-Damanawi, R., Lee, M., Harris, T., Mader, L. B., Bond, S., Pavey, H., et al. (2018). Randomised controlled trial of high versus ad libitum water intake in patients with autosomal dominant polycystic kidney disease: Rationale and design of the DRINK feasibility trial. British Medical Journal Open, 8(5), e022859. https://doi.org/10.1136/bmjopen-2018-022859

    Article  Google Scholar 

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Acknowledgements

The author would like to thank Sandra McKeown for her knowledge and insight on creating database search strategies.

Funding

The research was funded through the Ontario Child Health Support Unit through OSSU (the Ontario SPOR [Strategy for Patient-Oriented Research] SUPPORT [Support for People and Patient-Oriented Research and Trials] Unit).

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  1. School of Rehabilitation Therapy, Queen’s University, Kingston, Canada

    Malcolm McNeill, Samantha Noyek, Eshetu Engeda & Nora Fayed

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  2. Samantha Noyek
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  3. Eshetu Engeda
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  4. Nora Fayed
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Correspondence to Samantha Noyek.

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McNeill, M., Noyek, S., Engeda, E. et al. Assessing the engagement of children and families in selecting patient-reported outcomes (PROs) and develo** their measures: a systematic review. Qual Life Res 30, 983–995 (2021). https://doi.org/10.1007/s11136-020-02690-4

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