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Assessment of: self-management skills towards transition readiness and patient portal use among Hispanic adolescent and young adult patients
  1. Sophie Allende-Richter1,2,
  2. Melanie Ramirez2,3,
  3. Zana Khoury1,
  4. Fabienne Bourgeois1,2,
  5. Alexandra Epee-Bounya1,2,
  6. Kitty O'Hare4,5
  1. 1Division of General Pediatrics, Department of Medicine, Boston Children’s Hospital, Boston, Massachusetts, USA
  2. 2Department of Pediatrics, Harvard Medical School, Boston, Massachusetts, USA
  3. 3Tufts University, Department of Community Health, Boston, Massachusetts, USA
  4. 4Department of Medicine, Harvard Medical School, Boston, Massachusetts, USA
  5. 5WakeMed Children’s Hospital, Raleigh, North Carolina, USA
  1. Correspondence to Dr Sophie Allende-Richter; Sophie.allende{at}childrens.harvard.edu

Abstract

We conducted a 15-item self-answered survey to assess self-management skills and explore interest in a patient portal among publicly insured Hispanic youths ages 12–25. Out of 61 participants, 33% did not know how to schedule an appointment, 50% how to refill prescriptions, 58% how to access their personal health information, 84% were unaware of the portal and 92% never used it. Referring to the portal as an online application increased participants interest by 39%. Although study participants exhibit low self-management skills and awareness of a patient portal, most welcome using it to manage their health. Further research is needed to validate whether a patient portal can promote self-management skills towards transition readiness among Hispanic youths.

  • adolescent health
  • qualitative research
http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Eighty-four per cent of US youths, with and without special healthcare needs, do not receive comprehensive healthcare transition (HCT) preparation.1 Failure to properly transfer adolescent and young adult (AYA) patients to adult care is associated with increased demand on paediatric providers untrained in adult medicine, lapses in healthcare access,2 preventable emergency department visits and hospital admissions.3 The 2018 clinical report on HCT published by the American Academy of Pediatrics (AAP), American Academy of Family Physicians (AAFP) and American College of Physicians (ACP), recommends developing systems that promote early and continued engagement of AYA to support HCT preparation.4 With the ability to manage appointments, message providers, access personal health information (PHI) patient portals are electronic health record applications that have been associated with better medication management among youths with chronic illness.5

Our objective was to explore whether the use of a patient portal can promote AYA patient’s self-management skills towards transition readiness.

We conducted a cross-sectional survey among publicly insured Hispanic youths, at an academic paediatric practice located in Boston, from September to November 2018. We designed a 15-item survey (online supplementary material) to evaluate:(1) self-management skills using six questions adapted from a validated screening tool, the Transition Readiness Assessment Questionnaire,6 (2) current use and awareness of a patient portal and3 preferred methods for accessing healthcare. The survey was available in English and Spanish. Patient and public involvement statement: although there were no active patient and public involvement in this research, this study was designed with the aim to assess and improve our patients experiences. We recruited 61 participants ages 12–25, the mean age was 16.77 years, 56% self-identified as female and 44% as male, the majority were Hispanic (93%) and most spoke English fluently (98%). Our results showed that 33% of participants did not know how to schedule medical appointment, 50% how to refill prescriptions, and 57% how to access PHI, 48% were unaware of our transition policy, 84% of our patient portal, 10% knew how to access it but only 8% had used it (table 1) (online supplementary material).

Supplemental material

Supplemental material

Table 1

Adolescent self-management skills assessment and portal awareness

The first 21 respondents demonstrated little interest in patient portal. Thus, we clarified the survey referring to the portal as an online tool. This resulted in a 39% increase in reported preference for the portal. Out of 40 additional respondents, 68% were interested in self-scheduling and 80% in accessing PHI through the portal (table 2).

Table 2

Adolescent preferences

While study participants exhibit low self-management skills and awareness of a patient portal, most welcome using it to manage their health. Further research is needed to validate whether a patient portal can promote self-management skills towards transition readiness among publicly insured Hispanic youths.

Acknowledgments

This manuscript was made possible thanks to the support of the Harvard Medical Faculty Teaching Compensation and the Stuart and Jane Weitzman Family Foundation. The findings of this study were shared through an oral presentation at the annual Pediatric Academic Societies Meeting in Baltimore, MD in May 2019.

References

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Footnotes

  • Contributors SA-R conceptualised the study, critically reviewed and revised the manuscript for important intellectual content. MR provided significant contributions to the data collection that led to this manuscript. She also drafted the initial manuscript, reviewed and revised it. ZK provided significant contributions to the data analysis and presentation used in this manuscript. She also critically reviewed and revised the manuscript. FB provided substantial contribution to the manuscript conception and critically reviewed and revised it. AE-B provided substantial contribution to the manuscript conception and critically reviewed and revised it. KO provided substantial contribution to the manuscript conception and critically reviewed and revised it.

  • Funding This study was funded by Harvard Medical School Faculty Teaching Compensation.

  • Competing interests None declared.

  • Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

  • Patient consent for publication Not required.

  • Ethics approval Please note this study was exempted as a quality improvement initiative by our Institutional Board of Review.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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