SCDAA 46th Annual National Convention

Abstract

Authors:
Ms. Robin C. Howard- Global Blood Therapeutics, Mr. Daniel C. Reinhardt- Return on Focus,
Ms. Jeanne M. Loboda- Global Blood Therapeutics, Ms. Abigail M. Manning- Return on Focus

Objective: Sickle cell disease (SCD) is a genetic, lifelong blood disorder. Many individuals with SCD lack access to adequate resources and care because of the small number of hematology specialists and primary care physicians who have experience treating the disease.
Connecting families with SCD with educational resources to help them better understand the disease, available treatment options, and sources for support is crucial to promote health literacy, improve communication with health care providers, and foster dialogue with the broader community. The goal of this study was to understand how caregivers and individuals with SCD engage digitally to find, use, and share information related to SCD.
Methods: In December 2017, a 25-question online survey was fielded by Return on Focus to address the study goals. Eligible participants included primary caregivers of children aged 6-17 years and adults aged 18-60 years with SCD. Participants were required to reside in the US. Participants were recruited via an online panel.
Results: A total of 61 participants completed the survey. Participants included 51 adults with SCD and 10 primary caregivers of children with SCD.
In the adult participant cohort, 65% were male and the average age was 37 (range 22-55 years); 84% reported current or past use of hydroxyurea; 56% reported seeing a primary care physician (PCP) for the treatment of SCD, and 33% reported seeing a hematologist; 49% reported attaining a bachelor’s degree, and 25% reported attaining an advanced degree.
In the primary caregiver cohort, 60% reported caring for a male child, and the average age of the child cared for was 10 (range 6-15 years); 70% reported current or past use of hydroxyurea; 50% reported seeing a PCP for the treatment of SCD, and 30% reported seeing a hematologist; 60% reported attaining a bachelor’s degree, and 30% reported completing some college.
More than half of the participants reported that they had good or very good knowledge of SCD and its treatments overall. About three-quarters of adults and half of caregivers reported searching digitally for information related to SCD at least weekly. Approximately 40% of adults and caregivers reported using a mobile or smart phone to search for information related to SCD almost daily. Desktops, laptops, and tablets were also used but less frequently, and they were more likely to be used weekly.
Adults and caregivers were very likely to seek information via general searches (eg, Google), as well as by browsing their treatment centers, professional societies, and general health and medicine websites, with treatment centers and professional societies rated as highly influential sources. Participants highly valued information provided by health care providers, but information provided by family and friends was also very valuable when making treatment or medication decisions related to SCD. SCDAA, Sickle Cell 101, WebMD, and Mayo Clinic were top visited sites overall, with more than 25% of participants visiting these sites in the past 6 months. For caregivers, KidsHealth was also a top site, with half of participants visiting within the same time period.
Over 60% of participants reported taking information that they found online to their healthcare provider for further discussion. About one-third of participants reported sharing information they found online with family and friends, and about 20% reported using information they found online to advise others about SCD.
These results compare favorably when compared with normative data for the same questions that have been asked of respondents living with other diseases (including migraine, idiopathic pulmonary fibrosis, cardiovascular disease, and cancer) indicating that individuals with SCD are very active and highly amenable to receiving disease education online.
Conclusions: Individuals with SCD and primary caregivers of children with SCD are active seekers of information online, and many are using information that they find digitally to help inform discussions with their healthcare providers. Various devices are used for online searches. Mobile devices are used most often, but laptop and desktop computers are also used by the same individuals, though less frequently. Content should be formatted across a variety of screen sizes, to ensure readability and an overall good user experience. Materials should be developed for ease of printing or sharing, so patients can easily bring them to their healthcare provider visits to drive productive conversations. Given the high reliance on Internet searches to seek information, it is important for providers of disease education content to consider search engine optimization in their strategies.