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Development and pre-testing of a family-centered digital intervention to help families know what to EXPECT from
Clara C Hatch1,2, Lydia Haupt Levy1,2, Kara M Kelly3,4
1Dana-Farber/Boston Children's Cancer and Blood Disorders Center, 450 Brookline Ave, Boston, MA, 02215, USA.
Insights
A new digital tool, "EXPECT," was co-developed to support families of children with acute lymphoblastic leukemia (ALL). This intervention addresses communication gaps and improves preparedness for the complex ALL treatment journey.
Area of Science:
- Pediatric Oncology
- Digital Health Interventions
- Family-Centered Care
Background:
- Acute lymphoblastic leukemia (ALL) is the most common pediatric cancer, requiring extensive treatment.
- Families face significant burden due to complex regimens and communication challenges.
- Parents often feel unprepared to manage their child's ALL care.
Purpose of the Study:
- Co-develop and pre-test a digital health intervention for pediatric ALL families.
- Enhance communication regarding expectations during and after ALL treatment.
- Address information and functionality needs identified by stakeholders.
Main Methods:
- Iterative, stakeholder-driven co-development of the "EXPECT" website.
- Phase 1: Information synthesis, content creation, and website development.
- Phase 2: Pre-testing with parents of ALL patients, including acceptability ratings and interviews.
Main Results:
- High acceptability of the "EXPECT" website (4.7/5).
- Positive feedback on user-friendliness and features like the interactive treatment roadmap.
- Parents desired early access and anticipated using the tool throughout treatment and post-treatment.
Conclusions:
- Co-developed "EXPECT" is an acceptable digital health intervention for pediatric ALL families.
- The intervention is being refined based on feedback for future testing.
- A multi-center pilot study will evaluate the feasibility, use, and efficacy of "EXPECT" in real-time treatment discussions.
Purpose:
Acute lymphoblastic leukemia (ALL), the most common pediatric malignancy, involves multi-year treatment with substantial outpatient care, which contributes to high parent/caregiver burden. Communication gaps and complex treatment regimens can leave families feeling unprepared for care of their children with ALL. To address this, we co-developed and pre-tested a digital health intervention supporting communication about what to expect during and after pediatric ALL treatment.
Methods:
Employing an iterative, stakeholder-driven process, we co-developed and pre-tested a family-centered interactive website, "EXPECT," in two phases. Phase 1 included a secondary synthesis of stakeholder needed information and functionality (contextual inquiry), content creation, and website development, overseen by a multidisciplinary steering committee of clinical experts, patients, and families. In Phase 2 pre-testing, parents of patients with ALL rated the website's acceptability and provided feedback during semi-structured interviews.
Results:
Synthesis of previous patient, parent, and provider interviews revealed key priorities for intervention content and design which were addressed in content creation and web development. Pre-testing demonstrated high acceptability (4.7/5). Participants highlighted EXPECT's user-friendliness and innovative features such as the interactive treatment roadmap. Participants preferred to receive early access to the website, within weeks of initiating treatment, and anticipated using EXPECT throughout therapy and the post-treatment period, primarily on mobile devices.
Conclusion:
EXPECT co-development resulted in an acceptable digital health intervention to support families of children with ALL. EXPECT is being refined in response to feedback and will be tested in real-time treatment discussions in a multi-center pilot study to evaluate feasibility, use, and preliminary efficacy.
