by
Sheri L. Robb;
Debra S. Burns;
Kristin A. Stegenga;
Paul R. Haut;
Patrick O. Monahan;
Jane Meza;
Timothy E. Stump;
Brooke Cherven;
Sharron L. Docherty;
Verna L. Hendricks-Ferguson;
Eileen K. Kintner;
Ann E Haight;
Donna A. Wall;
Joan E. Haase
Background: Despite an increased risk of subsequent human papillomavirus (HPV)–related malignancies, HPV vaccine initiation rates among cancer survivors remain critically low. The purpose of this study was to determine the relationship between HPV vaccine intent and subsequent vaccine initiation among cancer survivors by linking data from a cross-sectional survey with state-based immunization registry records. Methods: Cancer survivors who were 9 to 26 years old were surveyed 1 to 5 years after their treatment to assess their HPV vaccine initiation status, HPV vaccine intent, sociodemographic factors, and vaccine-related health beliefs. HPV vaccine doses/dates were abstracted from the Georgia Registry for Immunization Transactions for 3.5 years after survey participation. Logistic regression models identified factors associated with vaccine intent and subsequent vaccine initiation. Results: Among survivors who were HPV vaccine–naive at survey participation (n = 103), factors associated with vaccine intent included the following: 1) provider recommendation for the HPV vaccine (odds ratio [OR], 5.0; 95% confidence interval [CI], 1.4-18.1; P =.014), 2) positive general attitude toward vaccines (OR, 4.8; 95% CI, 2.0-11.2; P <.001), and 3) perceived severity of HPV disease (OR, 3.5; 95% CI, 1.2-9.9; P =.02). Of the vaccine-naive patients, 28 initiated the HPV vaccine at a median of 1.1 years after the survey. Initiation was more likely among survivors who had reported vaccine intent (OR, 3.9; 95% CI, 1.2-12.5; P =.02) and was less likely among older survivors (OR per year, 0.7; 95% CI, 0.6-0.9; P <.001). Conclusions: These findings suggest that provider recommendation for the HPV vaccine plays a role in establishing intent, which then translates into subsequent initiation.
Purpose: The objective of this article is to demonstrate how user-centered design theory and methods can be employed to develop and iteratively improve technologies to support survivors of childhood cancer. Methods: Focus groups and structured interviews with young adult survivors of pediatric cancer (N = 3), parents (N = 11), and healthcare providers (N = 14) were conducted to understand their needs as potential users and the contexts in which they would use an electronic personal health record (PHR) for survivors, Cancer SurvivorLinkTM (https://cancersurvivorlink.org/). Usability evaluations were conducted to assess the functionality of the PHR using think aloud protocol with survivors/parents (N = 4) and focus groups with providers (N = 12). Results: Major themes identified through the needs assessment guided design of the PHR, including (1) education about the lifelong healthcare needs of pediatric cancer survivors (“Learn”), (2) secure electronic storage for healthcare documents to direct long-term follow-up care (“Store”), and (3) communication functionality to allow sharing of health documents with healthcare providers (“Share”). Usability evaluations identified challenges with the PHR design, which informed site enhancements to improve PHR usefulness and ease of use including a registration wizard and healthcare provider directory. Conclusions: User-centered design methods informed iterative enhancements to an untethered, patient-controlled PHR to address usability barriers and meet the self-identified needs of survivors of childhood cancer and their providers.