Table 2.

Summary of Study Design and Key Findings of Publications on Pediatric Patient Portals

REFERENCE (Year) REGION	STUDY DESIGN; POPULATION AND SAMPLE SIZE	OUTCOME MEASURES; INTERVENTION	RESULTS
Ahlers-Schmidt and Nguyen21 (2013), Wichita, KS	Cross-sectional survey; Parents (n = 64) of children in the waiting room at a university pediatric clinic (University of Kansas Pediatrics Clinic)	Familiarity with technology, knowledge of portal, and perceptions of and likelihood to use portal; in person demonstration of patient portal using on-site kiosks at the pediatric clinic.	The majority (59, [92%]) thought the patient portal was easy to use and planned to view medical records and lab results but disliked having separate accounts for each child and the lack of a “symptom checker.” Many (44, [69%]) planned for future use, (62, [97%]) found navigation helpful, and (37, [58%]) wanted access to the portal via on-site kiosks.
Bergman et al.22 (2008), Palo Alto, CA	Qualitative focus groups and electronic bulletin boards; Teens (n = 28) and parents (n = 23) attending a large multispecialty group (Palo Alto Medical Foundation)	Themes from focus groups transcripts regarding attitudes toward the use of patient portal; Video demonstration of patient portal	Significant themes included (1) issues about teens’ control of their own healthcare, (2) enthusiasm about the use of the portal to access providers, seek health information, and make appointments, and (3) concerns about confidentiality.
Britto et al.23 (2009), Cincinnati, OH	Videotaped usability testing and quantitative survey; Parents of children diagnosed with a chronic disease (CF, JIA, or DM) not enrolled in the patient portal (n = 16) at a tertiary children’s hospital (Cincinnati Children’s Hospital)	Time participants took to complete or give up on each task, themes from videotaped usability testing sessions (three iterations), and Computer Usability Satisfaction Questionnaire (i.e., participants’ opinions on the efficiency of the system, its ease of use, and the likeability of the system interface)	Mean task completion ranged from 73 ±61 s to locate a document to 431 ±286 s to graph lab results. Graphing, location of data, requesting access, and data interpretation were challenging. Only two tasks were completed by 100% (n = 16) of participants, and overall satisfaction ratings were moderate (means 4.1–5.3 on a 7-point Likert scale). Satisfaction was greatest for interface pleasantness (5.9 ± 0.7) and likeability (5.8± 0.6) and lowest for error messages (2.3±1.2) and clarity of information (4.2±1.4). Overall mean satisfaction scores improved between iteration 1 and 3.
Britto et al.11 (2013), Cincinnati, OH	Qualitative interview; Parents of children diagnosed with a chronic disease (CF, JIA or DM) who had used the patient portal once or more during previous year (n = 24) at Cincinnati Children’s Hospital	Themes from interview questions exploring how the portal might or might not help parents manage their child’s healthcare.	Significant themes included parents’ perception of patient portals as beneficial, providing easier communication with care providers, convenience, a sense of control, reduced anxiety and reassurance.
Byczkowski et al.20 (2011), Cincinnati, OH	Retrospective observational study (data collection dates: September 1, 2003–February 29,2008); Parents of children with a chronic disease (CF, JIA, or DM) enrolled in the portal by February 29,2008 (n = 1,900) at Cincinnati Children’s Hospital	Percent of families who obtained a portal account, used the portal for the first time within 3 months and again 3–6 months after registration, number of times logged in, and session length.	About 28% of families obtained a portal account. Of those, 48% used the portal within 3 months of registration, and 16% continued to use it 3–6 months after registration. Families of African American patients and of patients insured by Medicaid were less likely to obtain a portal account. More outpatient visits and having private health insurance were associated with increased portal registration and use.
Byczkowski et al.6 (2014), Cincinnati, OH	Cross-sectional phone survey and semi-structured qualitative interviews; Phone surveys with parents of children with a chronic disease (CF, JIA, or DM) enrolled and using the portal (n = 126), and semistructured interviews with parents of children with a chronic disease enrolled but not using the portal (n= 15) at Cincinnati Children’s Hospital	Parent ratings of their experiences with and the value of a Web-based portal and reasons for not using the portal	Most parents agreed portal information was accurate, timely and useful. One hundred one (80%) used the portal once or more per month. Use did not replace calling providers. Eighty-eight (70%) said the portal improved ability to manage and understand child’s condition. Confidentiality and seeing worrisome health-related information about child were not major concerns. The portal helped improve parents’ understanding of and ability to manage their child’s condition.
Fiks et al.1 (2014), Philadelphia, PA	Semistructured qualitative interviews, focus groups, usability testing; semistructured interviews with parents of children with asthma (n = 7), focus groups with clinicians (n = 51), and usability testing with parents and clinicians (n = 10) at one urban and two suburban practices allied with Children’s Hospital of Philadelphia	Themes from interviews and focus groups regarding the utility and usability of specific features and overall portal system	Significant themes included the need for the portal to support sustained family-clinical team communication and ensure patient safety. Parents and clinicians prioritized (1) collecting parent and child concerns and goals, (2) symptom, side effect, and medication adherence tracking with decision support, and (3) accessible educational materials. More than 80% of participants (n = 8) were able to complete each scenario, and satisfaction ratings were high (means 8.2–8.4 on a 9-point Likert scale).
Hannan17 (2010), Hyde and Stockport, United Kingdom	Descriptive cross-sectional case study of one practice; Adult (n = 9,453) and pediatric patients ages 0–16 (n = 2,747) in two semirural practices associated with Haughton Thornley Medical Centres	Description of strategies used to enable patients to sign up for access to an electronic health record through an explicit consent process in-person and web-based video demonstrations of patient portal, and encouragement by clinicians for patients to get access to the portal	Key findings included 6% of patients gained access to their health records via an explicit consent process. There were over 100,000 viewings of the practice Web portal. There were no problems as a result of providing access.
Ketterer et al.19 (2013), Philadelphia, PA	Retrospective cross-sectional analysis (data collection dates: December 1,2007–November 30,2011) of data from a primary care database of an academic children’s hospital; children (n = 84,015) attending 1 of 13, urban and rural, primary care practices of an academic children’s hospital (Nemours Academic Children’s Hospital)	Enrolment in portal, activation of account, use of portal, demographics, practice characteristics, and presence of a chronic disease	About 38% enrolled in the portal; of these, about 26% activated the account. Portal enrolment was lower for adolescents, Medicaid recipients, low-income, Asian, other race and Hispanics and higher for patients with more office visits and autism on problem list. Once users were enrolled, portal activation was lower for Medicaid recipients, uninsured, African Americans, other race and Hispanics and higher for infants, going to a resident continuity practice, living farther from the practice, having more office visits, and having more problem list items.
Shaw and Ferranti8 (2011), Durham, NC	Cross-sectional secondary analysis of data (data collection dates: November 2009) from a database of large academic hospital (Duke University Medical Center); Patients (n = 5,963) diagnosed with type 1 or 2 diabetes enrolled in a provider-centered decision support tool. Age range,10–19 (n = 91).	Demographics and laboratory data	About 30% used the portal. Use was not a predictor of low-density lipoprotein and total cholesterol levels. Portal use was a significant predictor of glycosylated hemoglobin (p < .001). As patient-provider portals are increasingly implemented and used, clinical and nonclinical impacts must be evaluated. Portals provide patients with the opportunity to be increasingly involved in their own care, enhance patient-provider communication, and potentially reduce inequity, improve clinical outcomes, and increase access.
Tom et al.18 (2012), Washington State	Cross-sectional survey; Parents (n = 256) of children with chronic disease ≤ 5 years old and enrolled at an integrated healthcare system for ≥ 1 year. The healthcare system (Group Health Cooperative) provides care to 660,000 members in the Washington State.	Demographics, portal use in last 12 months (e.g., frequency of portal use, and barriers to use), parent ratings of care experiences (i.e., attention to growth and development, attention to safety and health, getting care quickly, getting needed care, prescription medications, and care coordination)	About 65% (n = 166) were portal users and 35% (n = 90) were nonusers. Top portal services were viewing medical and immunization records, secured messaging and scheduling appointments. Top reasons for not using the portal were “too busy,” “forgot login and/or password,” and “my child does not have healthcare needs.” No significant differences were found between users and nonusers.

CF, cystic fibrosis; DM, diabetes mellitus; JIA, juvenile idiopathic arthritis.