Pilot implementation of an electronic patient-reported outcome measure for planning and monitoring participation-focused care in early intervention

E C Albrecht, V C Kaelin, B L Rigau, J K Dooling-Litfin, E A Scully, N J Murphy, B M McManus, M A Khetani, High Value Early Intervention Research Group, Jamie Bane, Haley Carle, Amy Jatsko, Amanda Pedrow, Laura Sciarcon, E C Albrecht, V C Kaelin, B L Rigau, J K Dooling-Litfin, E A Scully, N J Murphy, B M McManus, M A Khetani, High Value Early Intervention Research Group, Jamie Bane, Haley Carle, Amy Jatsko, Amanda Pedrow, Laura Sciarcon

Abstract

Background: Family-centered care is a valued approach to improving child and family outcomes in early intervention (EI), yet there is need to implement interventions that support information exchange for shared decision-making when planning and monitoring EI care. This study aims at estimating the feasibility, acceptability, and value of implementing the Young Children's Participation and Environment Measure (YC-PEM), a valid electronic patient-reported outcome (e-PRO) that is designed to support family engagement when planning care and monitoring outcomes of care.

Methods: Data were gathered from caregivers (N = 139) that were enrolled in a Phase 1 trial of the YC-PEM e-PRO as implemented within 1 month of their child's next EI evaluation of progress. YC-PEM e-PRO feasibility was estimated according to enrollment and completion rates, and mean completion time. Chi-square tests were used to examine parent perceptions of YC-PEM e-PRO acceptability by caregiver education and family income. Caregiver feedback via open-ended responses were content coded to inform intervention and protocol optimizations. YC-PEM e-PRO value was estimated via composite and item-level scores to capture the extent of participation difficulty in home and community activities, and common areas of need regarding caregivers desired change in their child's participation.

Results: Feasibility of implementing the YC-PEM e-PRO in routine EI care was mixed, as evidenced by low enrollment rates (21.0-29.2%), a high completion rate (85.3%), and limited missing data (80.6% of completed cases contained no missing data). More than half of the participants reported that the completion of the YC-PEM e-PRO was at least somewhat helpful, regardless of family income or caregiver education, providing support for its acceptability. As for its value, the YC-PEM e-PRO results were viewed by 64% of caregivers, whose desire for change most often pertained to the child's participation in non-discretionary activities at home and structured activities in the community.

Conclusions: Results may support the implementation of YC-PEM e-PRO as a feasible, acceptable, and valued option for engaging families in planning the child's EI care. Results also inform select intervention and protocol optimizations prior to undertaking a multi-site pragmatic trial of its effectiveness on family engagement and shared decision-making within an EI clinical workflow.

Trial registration: Trial number: NCT03904797 . Trial registered at Clinicaltrials.gov . Registered 22 March 2019. Retrospectively registered.

Keywords: Care planning; Collaborative goal-setting; Early intervention; Family-centered care; Online; Participation; Young children.

Conflict of interest statement

The YC-PEM e-PRO was used in this study and is licensed for distribution through CanChild Centre for Childhood Disability Research. M. Khetani shares in revenue from YC-PEM sales for research and development activities in her lab.

Figures

Fig. 1
Fig. 1
Enrollment diagram
Fig. 2
Fig. 2
Percent of participation need in home activities (a) and community activities (b)

References

    1. IDEA Infant and Toddlers Coordinators Association . Percentage of all children (including at risk) under three receiving services. 2008–2012 child count data. 2018.
    1. Bruder MB, Dunst CJ. Factors related to the scope of early intervention service coordinator practices. Infants Young Child. 2008;21:176–185. doi: 10.1097/01.IYC.0000324547.54693.18.
    1. Bruder MB. Early childhood intervention: a promise to children and families for their future. Except Child. 2010. 10.1177/001440291007600306.
    1. Whipple W. Key principles of early intervention and effective practices: a crosswalk with statements from discipline specific literature. 2014.
    1. Bamm EL, Rosenbaum P. Family-centered theory: origins, development, barriers, and supports to implementation in rehabilitation medicine. Arch Phys Med Rehabil. 2008. 10.1016/j.apmr.2007.12.034.
    1. Hanna K, Rodger S. Towards family-centred practice in paediatric occupational therapy: a review of the literature on parent-therapist collaboration. Aust Occup Ther J. 2002. 10.1046/j.0045-0766.2001.00273.x.
    1. King G, Kertoy M, King S, Law M, Rosenbaum P, Hurley P. A measure of parents’ and service providers’ beliefs about participation in family-centered services. Child Heal Care. 2003. 10.1207/S15326888CHC3203_2.
    1. Ross SM, Smit E, Twardzik E, Logan SW, McManus BM. Patient-centered medical home and receipt of part C early intervention among young CSHCN and developmental disabilities versus delays: NS-CSHCN 2009–2010. Matern Child Health J. 2018. 10.1007/s10995-018-2540-z.
    1. The National Center for Parent Family and Community Engagement . Family engagement and school readiness. 2019.
    1. McWilliam RA. Protocol for the routine-based interview. 2009.
    1. An M, Palisano RJ. Family–professional collaboration in pediatric rehabilitation: a practice model. Disabil Rehabil. 2014. 10.3109/09638288.2013.797510.
    1. Brewer K, Pollock N, Wright FV. Addressing the challenges of collaborative goal setting with children and their families. Phys Occup Ther Pediatr. 2014. 10.3109/01942638.2013.794187.
    1. The DaSy Center . DaSy Data System Framework. Menlo Park: SRI International; 2014.
    1. Colorado Office of Early Childhood Division of Community and Family Support . Early Intervention Data System User Guide. 2018.
    1. MacKean GL, Thurston WE, Scott CM. Bridging the divide between families and health professionals’ perspectives on family-centred care. Health Expect. 2005. 10.1111/j.1369-7625.2005.00319.x.
    1. Rigau B, Scully B, Liftin J, Murphy N, McManus B, Khetani M. Community engagement to pilot electronic patient-reported outcomes (e-PROs) in early intervention: lessons learned. J Clin Transl Sci. 2018. 10.1017/cts.2018.15.
    1. Khetani MA, Graham JE, Davies PL, Law MC, Simeonsson RJ. Psychometric properties of the young children’s participation and environment measure. Arch Phys Med Rehabil. 2015. 10.1016/j.apmr.2014.09.031.
    1. Khetani MA. Validation of environmental content in the young children’s participation and environment measure. Arch Phys Med Rehabil. 2015. 10.1016/j.apmr.2014.11.016.
    1. Adair B, Ullenhag A, Rosenbaum P, Mats G, Keen D, Imms C. Measures used to quantify participation in childhood disability and their alignment with the family of participation-related constructs: a systematic review. Dev Med Child Neurol. 2018. 10.1111/dmcn.13959.
    1. Schiariti V, Fowler E, Brandenburg JE, Levey E, Mcintyre S, Sukal-Moulton T, Ramey SL, Rose J, Sienko S, Stashinko E, Vogtle L, Feldman RS, Koenig JI. A common data language for clinical research studies: the National Institute of Neurological Disorders and Stroke and American Academy for Cerebral Palsy and Developmental Medicine Cerebral Palsy Common Data Elements Version 1.0 recommendations. Dev Med Child Neurol. 2018. 10.1111/dmcn.13723.
    1. Lim CY, Law M, Khetani M, Rosenbaum P, Pollock N. Psychometric evaluation of the young Children’s participation and environment measure (YC-PEM) for use in Singapore. Phys Occup Ther Pediatr. 2018. 10.1080/01942638.2017.1347911.
    1. Khetani MA, McManus BM, Arestad K, Richardson Z, Charlifue-Smith R, Rosenberg C, et al. Technology-based functional assessment in early childhood intervention: A pilot study. Pilot Feasibility Stud. 2018. 10.1186/s40814-018-0260-1.
    1. Jones G. Raising the profile of pilot and feasibility studies in relation to the development, evaluation and implementation of patient-reported outcome measures. Pilot Feasibility Stud. 2018. 10.1186/s40814-017-0151-x.
    1. Perry CK, Damschroder LJ, Hemler JR, Woodson TT, Ono SS, Cohen DJ. Specifying and comparing implementation strategies across seven large implementation interventions: a practical application of theory. Implement Sci. 2019. 10.1186/s13012-019-0876-4.
    1. National Academies of Sciences Engineering and Medicine . Implementation science: method and approaches. In: Beachy SH, Olson S, Addie S, editors. Applying an implementation science approach to genomic medicine: workshop summary. Washington, DC: The National Academies Press; 2016. pp. 7–18.
    1. Khetani M, Bosak D, Jarvis J, Teplicky R. Young Children’s Participation and Environment User Guide ( Version 1. 2) 2019. pp. 1–38.
    1. Imms C, Granlund M, Wilson PH, Steenbergen B, Rosenbaum PL, Gordon AM. Participation, both a means and an end: a conceptual analysis of processes and outcomes in childhood disability. Dev Med Child Neurol. 2017. 10.1111/dmcn.13237.
    1. Imms C, Adair B, Keen D, Ullenhag A, Rosenbaum P, Granlund M. “Participation”: a systematic review of language, definitions, and constructs used in intervention research with children with disabilities. Dev Med Child Neurol. 2016. 10.1111/dmcn.12932.
    1. Arakelyan S, Maciver D, Rush R, O’hare A, Forsyth K. Family factors associated with participation of children with disabilities: a systematic review. Dev Med Child Neurol. 2019. 10.1111/dmcn.14133.
    1. Cicchetti DV. Guidelines, criteria, and rules of thumb for evaluating normed and standardized assessment instruments in psychology. Psychol Assess. 1994;6:284–290. doi: 10.1037/1040-3590.6.4.284.
    1. Khetani MA, Graham JE, Alvord C. Community participation patterns among preschool-aged children who have received part C early intervention services. Child Care Hlth Dev. 2013;39(4):490–499. doi: 10.1111/cch.12045.
    1. Hebbeler K, Spiker D, Bailey D, et al. Early Intervention for Infants & Toddlers with Disabilities and Their Families: Participants, Services, and Outcomes. Final Report of the National Early Intervention Longitudinal Study (NEILS) 2007.
    1. Mayring P. Qualitative content analysis: theoretical foundation, basic procedures and software solution. 2014.
    1. Whalley Hammell KR. Client-centred occupational therapy: the importance of critical perspectives. Scand J Occup Ther. 2015. 10.3109/11038128.2015.1004103.
    1. Anaby D, Law M, Coster W, Bedell G, Khetani M, Avery L, et al. The mediating role of the environment in explaining participation of children and youth with and without disabilities across home, school, and community. Arch Phys Med Rehabil. 2014. 10.1016/j.apmr.2014.01.005.
    1. Khetani M, Albrecht E, Jarvis J, Pogorzelski D, Cheng E, Choong K. Determinants of change in home participation among critically ill children. Dev Med Child Neurol. 2018. 10.1111/dmcn.13731.
    1. Dunst CJ, Hamby D, Trivette CM, Raab M, Bruder MB. Young children’s participation in everyday family and community activity. Psychol Rep. 2002;91:875–897. doi: 10.2466/pr0.2002.91.3.875.
    1. Albrecht EC, Khetani MA. Environmental impact on young children’s participation in home-based activities. Dev Med Child Neurol. 2017. 10.1111/dmcn.13360.
    1. Guralnick MJ. Early intervention for children with intellectual disabilities: An update. J Appl Res Intellect Disabil. 2017. 10.1111/jar.12233.
    1. Khetani MA, Lim HK, Corden ME. Caregiver input to optimize the design of a pediatric care planning guide for rehabilitation: descriptive study. JMIR Rehabil Assist Technol. 2017;4(2):e10. doi: 10.2196/rehab.7566.
    1. McManus B, Khetani M. Early Intervention Colorado (EI-CO) Participant Characteristics, Service Use, and Outcomes, Colorado, 2014–2016. Ann Arbor: Inter-university Consortium for Political and Social Research [distributor]; 2018.
    1. Di Marino E, Tremblay S, Khetani M, Anaby D. The effect of child, family and environmental factors on the participation of young children with disabilities. Disabil Health J. 2018. 10.1016/j.dhjo.2017.05.005.
    1. Åström FM, Khetani M, Axelsson AK. Young children’s participation and environment measure: Swedish cultural adaptation. Phys Occup Ther Pediatr. 2018. 10.1080/01942638.2017.1318430.

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