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.
Keywords: adolescent health, qualitative research
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).
bmjpo-2020-000658supp001.pdf (29.6KB, pdf)
bmjpo-2020-000658supp002.pdf (149.8KB, pdf)
Table 1.
Adolescent self-management skills assessment and portal awareness
| n=61 35 female: 26 male Age (years): 12–14 (28%); 15–17 (36%); 18–25 (36%) |
Strongly agree, (%) | Agree, (%) | Neither agree nor disagree, (%) | Disagree, (%) | Strongly disagree, (%) | Unanswered, (%) |
| Adolescent Awareness of Healthcare Access | ||||||
| I know how to schedule and cancel an appointment with my provider | 26 (43) | 15 (25) | 9 (15) | 9 (15) | 2 (3) | 0 (0) |
| I know how to refill my own prescriptions | 15 (25) | 16 (26) | 7 (11) | 21 (34) | 2 (3) | 0 (0) |
| I know how to access personal health information (eg, lab/test results, physical exam forms, etc.) | 14 (23) | 12 (20) | 12 (20) | 20 (33) | 3 (5) | 0 (0) |
| General Adolescent Healthcare Awareness | ||||||
| I understand how my health insurance might change at age 19 | 13 (21) | 21 (34) | 10 (16) | 16 (26) | 1 (2) | 0 (0) |
| I understand my rights to confidential health services as an adolescent | 21 (34) | 23 (38) | 6 (10) | 11 (18) | 0 (0) | 0 (0) |
| I understand the transition policy at Martha Eliot | 12 (20) | 20 (33) | 9 (15) | 19 (31) | 1 (2) | 0 (0) |
| Adolescent Experience with MyChildren's Patient Portal | Yes | No | Unanswered | |||
| Were you aware the MyChildren’s patient portal has an app and website that allows you to send direct messages to your doctor's office? | 10 (16) | 51 (84) | 0 (0) | |||
| Do you know how to access the MyChildren’s patient portal? | 6 (10) | 55 (90) | 0 (0) | |||
| Have you ever used the MyChildren's patient portal? | 5 (8) | 55 (90) | 1 (2) | |||
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
| 35 female: 26 male Age (years): 12–14 (28%); 15–17 (36%); 18–25 (36%) |
I would prefer to schedule my appointments: (%) | I would prefer to refill my prescriptions: (%) | I would prefer to access personal health information: (%) | |
| Online (MyChildren's Patient Portal Website or App)* n=40 |
Strongly agree | 15 (38) | 10 (25) | 14 (35) |
| Agree | 12 (30) | 15 (38) | 18 (45) | |
| Neither agree nor disagree | 6 (15) | 7 (18) | 1 (3) | |
| Disagree | 4 (10) | 5 (13) | 4 (10) | |
| Strongly disagree | 2 (5) | 2 (5) | 2 (5) | |
| Unanswered | 1 (3) | 1 (3) | 1 (3) | |
| Via MyChildren's Patient Portal App† n=21 |
Strongly agree | 2 (10) | 1 (5) | 4 (19) |
| Agree | 6 (29) | 2 (10) | 4 (19) | |
| Neither agree nor disagree | 7 (33) | 9 (43) | 7 (33) | |
| Disagree | 5 (24) | 4 (19) | 4 (19) | |
| Strongly disagree | 1 (5) | 5 (24) | 2 (10) | |
| Unanswered | 0 (0) | 0 (0) | 0 (0) | |
| Via MyChildren's Patient Portal Website† n=21 |
Strongly agree | 2 (10) | 1 (5) | 6 (29) |
| Agree | 4 (19) | 1 (5) | 2 (10) | |
| Neither agree nor disagree | 10 (48) | 10 (48) | 8 (38) | |
| Disagree | 3 (14) | 4 (19) | 3 (14) | |
| Strongly disagree | 2 (10) | 5 (24) | 2 (10) | |
| Unanswered | 0 (0) | 0 (0) | 0 (0) | |
| Via phone call n=61 |
Strongly agree | 23 (38) | 14 (23) | 14 (23) |
| Agree | 29 (48) | 28 (46) | 25 (41) | |
| Neither agree nor disagree | 8 (13) | 9 (15) | 12 (20) | |
| Disagree | 1 (2) | 8 (13) | 8 (13) | |
| Strongly disagree | 0 (0) | 2 (3) | 1 (2) | |
| Unanswered | 0 (0) | 0 (0) | 1 (2) | |
| In person n=61 |
Strongly agree | 11 (18) | 20 (33) | 25 (41) |
| Agree | 21 (34) | 19 (31) | 27 (44) | |
| Neither agree nor disagree | 18 (30) | 12 (20) | 4 (7) | |
| Disagree | 7 (11) | 6 (10) | 3 (5) | |
| Strongly disagree | 2 (3) | 2 (3) | 1 (2) | |
| Unanswered | 2 (3) | 2 (3) | 1 (2) | |
*Based on 40 surveys using the phrasing ‘Online (including MyChildren’s Patient Portal Website or App)’.
†Based on 21 surveys using the phrasing ‘MyChildren’s Patient Portal Website’ and ‘MyChildren’s Patient Portal App’.
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.
Supplementary Material
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.
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.
References
- 1.Lebrun-Harris LA, McManus MA, Ilango SM, et al. Transition planning among US youth with and without special health care needs. Pediatrics 2018;142:e20180194. 10.1542/peds.2018-0194 [DOI] [PubMed] [Google Scholar]
- 2.Sheehan AM, While AE, Coyne I. The experiences and impact of transition from child to adult healthcare services for young people with type 1 diabetes: a systematic review. Diabet Med 2015;32:440–58. 10.1111/dme.12639 [DOI] [PubMed] [Google Scholar]
- 3.Shepard CL, Doerge EJ, Eickmeyer AB, et al. Ambulatory care use among patients with spina bifida: change in care from childhood to adulthood. J Urol 2018;199:1050–5. 10.1016/j.juro.2017.10.040 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.White PH, Cooley WC. Transitions clinical report authoring group, American Academy of pediatrics, American Academy of family physicians, American College of physicians. supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 2018;142:e20182587. [DOI] [PubMed] [Google Scholar]
- 5.Kidwell KM, Peugh J, Westcott E, et al. Acceptability and feasibility of a disease-specific patient portal in adolescents with sickle cell disease. J Pediatr Hematol Oncol 2018. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6.Sawicki GS, Lukens-Bull K, Yin X, et al. Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ--Transition Readiness Assessment Questionnaire. J Pediatr Psychol 2011;36:160–71. 10.1093/jpepsy/jsp128 [DOI] [PMC free article] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
bmjpo-2020-000658supp001.pdf (29.6KB, pdf)
bmjpo-2020-000658supp002.pdf (149.8KB, pdf)
