About this survey
A quality of life study for the parents of newly diagnosed retinoblastoma patients is currently being designed by the Retinoblastoma Service at Royal London. We are inviting patients, parents of children affected by retinoblastoma, and members of the public to complete a short survey about the upcoming study. Your feedback will help ensure the study is relevant to the needs and concerns of patients, parents, and the public. This is your chance to tell the researchers what you think about the study so far. Completing this survey will take 5-10 minutes of your time.

About the study being designed 
The future study will be for parents/caregivers of children (aged 0-5 years) newly diagnosed with retinoblastoma. Participating parents will be asked to complete questionnaires throughout the first 3 years after their child’s diagnosis.

Retinoblastoma is an eye cancer that almost exclusively affects children under the age of 5. Parents are faced with stressful decisions about their child’s care, both during treatment and after recovery. Previous research has shown that parental stress influences the quality of life of young cancer patients. Moreover, varying levels of stress are associated with different coping styles. No research has yet been done to assess how the quality of life of retinoblastoma patients, parental stress, and parental coping changes throughout treatment. Our study will assess these factors, which we hope will identify predictors of diminished quality of life, and avenues for intervention, to better support patients and their families.

Families participating in the upcoming study will be asked to complete questionnaires about their child’s quality of life, their coping and their stress every 3 months for the first 2 years of the study, and every 6 months for the 3rd year of the study. An additional impact questionnaire that will ask about the burden of the disease (finances, taking time off work for hospital visits, etc.) will be provided once a year. The questionnaires will take 30-40 minutes. The total time commitment of the study is 6 hours over 3 years. Parents can choose to stop participating at any time without consequence.

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* 1. Are you...

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* 2. Is the aim of the study clear from the description?

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* 3. Is the study worth doing?

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* 4. Do you think the study will benefit patients/parents?

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* 5. Do you have any concerns about this study?

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* 6. The data collected in the first survey is more accurate if the survey is completed closer to diagnosis. How soon after diagnosis do you believe families would be willing to participate in this study?

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* 7. Answer the remaining questions (Q7-9) only if you are family/close loved one to a child who has/had retinoblastoma: 

Looking back at your own experience within the first few months after your child’s diagnosis, would participating in this study be something you would consider?

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* 8. If you responded "No" to Q7, what factors would have contributed to your disinterest? Check all that apply.

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* 9. Would you like to receive a copy of the current protocol or a summary of the study’s design to provide us with further input? (if yes, please offer e-mail contact)

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