Table 3 Qualitative analysis of Chart Board Questions 1–3 at CRRAB 2016 including themes, number of references, answers and coverage
From: The Canadian retinoblastoma research advisory board: a framework for patient engagement
Theme/Node | References (n, %) | Answers |
|---|---|---|
Question 1: By participating in the CRRAB I want to… | ||
Knowledge of RB | 10, 55.55% | - Learn from patients. |
- Learn about all the latest research. | ||
- Get the word out there in public | ||
- Educate all oncologists and continue to do so about the secondary risks and monitoring for all RBs throughout lifetime.a | ||
- Communicate risks and monitoring of secondary cancers for all Rbs | ||
- Inform future patients to better understand Rb. | ||
- Develop ideas for increased awareness in Rb.a | ||
- Tell/inform as many healthcare providers about this project; tell Rb families | ||
- Communicate post-Rb secondary health conditions; not cancer, re: immunity. | ||
- Target all Canadian medical schools to educate student doctors about monitoring for secondary cancers for all Rbs throughout lifetime.a | ||
Innovation | 6, 33.33% | - Improve global outcomes for Rb families. |
- Be in a position to effect change | ||
- Generate a unique researcher-patient model for producing research ideas and projects. | ||
- Generate novel ideas for research in Rb and associated diseases | ||
- Develop ideas for increased awareness in Rb.a | ||
- Develop a handbook for 18+ individuals affected by Rb, which would also include a self-advocacy guide in how to request monitoring or tests for possible secondary masses to be looked into that could bridge the language between doctor and patient to avoid miscommunication or bridges being burnt. | ||
Patient Oriented Care and Research | 6, 33.33% | - Support survivors and families |
- Incorporate patient perspective into research/study design to maximize the study potential. | ||
- Learn from patients. | ||
- Educate all oncologists and continue to do so about the secondary risks and monitoring for all Rbs throughout lifetime.a | ||
- Better advocate for involvement of families and patients in research. | ||
- Target all Canadian medical schools to educate student doctors about monitoring for secondary cancers for all Rbs throughout lifetime.a | ||
Question 2: What questions about retinoblastoma would you like to see answered by research? | ||
Bio-medical Focused | 9, 64.29% | - How to prevent retinoblastoma? |
- Early detection? | ||
- What is a “bad orbital ray”? | ||
- Whole eye transplant? | ||
- IVF and Rb? | ||
- Blood cord? | ||
- What are the second malignancy issues facing Rb survivors and how can we explore better? | ||
- Common threads between different mutations? | ||
- Differences in Unilateral, Bilateral, and Mosaicism – what do these mean? | ||
Patient Focused | 5, 35.71% | - Importance of family communication and telling risk to family members? |
- What are the major worries and concerns facing Rb survivors? | ||
- How can we improve GP and pediatrician training in recognizing and referring Rb? | ||
- How can we better support Rb patients during Rb? | ||
- What are the long-term issues facing Rb survivors? | ||
Question 3: How can we better engage patients and families in retinoblastoma research? | ||
Community Outreach | 5, 41.67% | - Use social media |
- Send quarterly (or 2x / year), plain language summaries of Rb research in Canada; “Rb Newsletter”. | ||
- Inform clinics that do flu shots that this is an option (+ genetic counselors, Ochealth, etc.). | ||
- Create social media support group | ||
- Social media blog. | ||
Personalized Contact | 4, 33.33% | - Having multiple modes of communication for families |
- Identify Rb patients | ||
- Approach Rb patients who are mature enough to participate and be positively engaged. | ||
- How can we *carefully engage patients? Risk? | ||
Education | 3, 25.00% | - Understanding the current standard of care. |
- Ensuring a mutual comprehension; i.e. training. | ||
- Demonstrate the power of research to understand the value “time well spent”. | ||