Family-Centered Research on Quality of Life in Families with Congenital Hyperinsulinism: “Light for double specificity and efficacy without burden: LightCure.”
The research team from the University of Applied Sciences in Hamburg, Germany invites hyperinsulinism (HI) families to take part in a study which aims to develop a patient-reported outcome measure to assess health-related quality of life in patients with congenital HI and their caregivers, as well as shared decision-making materials. Your experience can help improve care for people living with HI.
A PDF with more information is available for download in English and German.
1. What is the aim of the project?
The goal of the project is to create two helpful tools for people with HI, to make their daily life easier and help them get better care everywhere. The first tool is a questionnaire that lets children, teenagers, and adults with HI – and their families – share how the condition affects their daily life and health. The second tool is a simple manual guide between doctors, patients, and families to work together in making better choices about treatment.
Both the questionnaire and the manual will be developed based on the experiences of HI patients, caregivers, and doctors. They will then be carefully tested in several countries – including the US, Germany, the Netherlands, the UK, France, Spain, Italy, and Denmark – to make sure they work well for everyone across different cultures.
2. Why is it essential, especially for patients?
Living with HI can be stressful and complicated, yet the tools we have so far are too general and do not show what really matters to your condition. This project aims to change that – with your help.
We want to understand what you think is important for your quality of life and how your condition affects you and your family, including social, physical, and emotional aspects. It will also help future research in improving everyday care.
3. What are the different phases of the project, and what happens during these phases?
The study has four main parts; you can choose to take part in one or more:
- Interview: Talk to us about how the condition affects your daily life, feelings, and what matters most to you regarding your health. (duration approx. 45 minutes)
- Pilot-Questionnaire with Cognitive Debriefing: You will fill out a survey with some questions about your quality of life. Additionally, we will ask you what you think about these questions. Do they capture your experiences? This helps us see if the questionnaires we made from the first interviews make sense and work well for you. (duration approx. 20 minutes)
- Field- and re-testing the Questionnaire: You will fill out the shortened questionnaire two more times, two weeks apart. This helps us ensure the questions are clear and give correct results. (duration approx. 5 – 10 minutes)
- Feedback on Shared-decision making material – Share your thoughts on patient-friendly materials (like a brochure or video. (duration approx. 20 minutes)
To thank you for your time, you will receive vouchers for each part of the study.
4. Who can participate?
- Participants include:
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- children, adolescents, young adults, and adults with CHI (aged 8 years and above)
- caregivers of children, adolescents, young adults, and adults with CHI (aged 0-99 years)
- Languages: In the first step, we will start with English-, German-, and Dutch-speaking patients and caregivers.
5. How will your information be used?
We will use your information only for this study. Your name and personal details will not be shared or shown in any report.
6. How can someone take part?
If you are interested, just email Dr. Stefanie Witt (stefanie.witt@haw-hamburg.de). She will provide you with a complete information sheet and consent form and answer any questions.
