Impact Of Use Of a Disease-Specific Patient Portal On Transition Readiness and Quality Of Life In Adolescents With Sickle Cell Disease

Disease-specific patient portals use technology to provide patients with easy access to health information and have been shown to promote healthy behaviors, encourage self-care, and assist with informed decision-making. Most of the available studies, however, have failed to examine the feasibility of patient portals with adolescent/young adult, vulnerable or underrepresented populations. As a first step toward enhancing patient access to medical information and better understanding how to engage adolescent/ young adult, diverse and vulnerable populations in using a patient portal, we designed and refined a disease-specific version of an existing patient portal (MyChart) for use with adolescents and young adults with sickle cell disease (SCD). We then piloted the patient portal with the goal of understanding the impact of the intervention on quality of life and transition readiness outcomes. We hypothesized that the patient portal would be rated as feasible, accurate and useful, and that use of the patient portal would be positively associated with transition readiness and increased quality of life.

Patients were recruited from a Comprehensive Sickle Cell Center at an urban pediatric medical center in the Midwest through letters, at clinic visits and at SCD-related events. The current study reports data from a sample of participants who have been followed 6 months post-intervention. At each time point (Baseline, Post, 3, 6 Months Post-Intervention), participants completed a series of measures including the Pediatric Quality of Life Inventory (PedsQL^TM) and an item asking about their readiness to transition to the adult healthcare system. The patient portal intervention consisted of four assignments to facilitate familiarity with the portal (e.g. graphing a test result). All participants completed these assignments over the 6-week intervention.

All participants in the study were African American (N=20; 60% male) with a mean age of 19.4 years (SD = 2.08). Ninety percent had HbSS (5% HbSC; 5% HbSB⁺Thal). At the post-intervention time point, the portal was rated as feasible (M = 3.3/5) and useful (M = 4.3/5). Data indicated that participants viewed/used the following portal features most often: 1) Lab results, 2) Medications, 3) Messaging, and 4) Appointment Review. Patients logged in an average of 6.59 times over six months (range: 0-39). Portal use was analyzed categorically as non-users (with zero independent logins after the intervention period) and users (with one or more independent logins after the intervention period). Sixty percent (n=12) of participants were users, whereas 40% were non-users. Portal patients reported increasing readiness to transition over the follow-up period (Post M = 2.3/5; 3-month M = 3/5; 6-month M = 3.6/5). Finally, a repeated measures ANOVA determined that Total PedsQL^TM scores increased significantly over time, (F(3) = 2.98, p = .05). Post hoc tests using Bonferroni correction revealed the largest increase in Total PedsQL scores between the post-intervention and 3-month time points. Although this increase was not statistically significant, there was a significant correlation between transition readiness and Total PedsQL scores at the 3-month time point.

Study results suggest that participants found the disease-specific patient portal easy to use and beneficial to their overall health management. Participants also showed improvements in quality of life across the post-intervention time period, suggesting that use of a patient portal may have served to bolster quality of life in this sample. Study participants further reported increased readiness to transition, which was positively associated with quality of life at 3 months post- intervention. Despite the small sample size, results of this study help to increase our understanding of the relationship between portal use and health and transition outcomes. This intervention shows promise in engaging SCD adolescent/ young adult patients in clinical care and disease management that can ultimately be evaluated in a larger multi-site study.

This study was funded in part by NHLBI Grant#: 1K07HL108720-03 and the Cincinnati Children's Hospital Medical Center Place Outcomes Award.

No relevant conflicts of interest to declare.