Assessment of: self-management skills towards transition readiness and patient portal use among Hispanic adolescent and young adult patients.

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. © Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

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).

Table 1

Adolescent self-management skills assessment and portal awareness

n=6135 female: 26 maleAge (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 maleAge (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 calln=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 personn=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.