INCTR Retinoblastoma Strategy Group Report

1. INCTR Retinoblastoma Strategy Group Report Understanding Problems Faced by Parents of Children with Retinoblastoma Prior to Treatment October 6, 2009

2. Why the Questionnaire Study was Developed • Group Consensus • Late presentation was common • Need to identify factors contributing to late presentation • Lack of professional awareness • Lack of public awareness • Social factors of families

3. Ultimate Objective: Stopping the Vicious Cycle Programs of Public and Non-Specialist Education Essential Outreach INCTR RSG Returns

4. Development of the Questionnaire • January, 2001 • A questionnaire was designed by the Retinoblastoma Strategy Group which is comprised of investigators representing many low and middle income countries • August, 2001 • Protocol approved by INCTR Ethical Review Committee • Parent interviews began

5. Participating Institutions • Institutions • Mexico - Instituto Nacional de Pediatria • Guatemala – University Francisco Marroquin • Bolivia – El Instituto Oncologico del Oriente Boliviano • Brazil – Santa Marcelina Hospital • Nigeria – OAUTHC Obafemi Awolowo University • Tanzania – Ocean Road Cancer Institute • Zimbabwe – University of Zimbabwe • Turkey - Ankara University and Dokuz Euyul University • India - All India Institute of Medical Sciences, Tata Memorial Hospital, Cancer Institute Chennai • Pakistan - Shaukhat Khanum Memorial Hospital

6. Number of Questionnaires by Region

7. Total Surveys Analyzed

8. Age of Participants

9. Age of Parents • Regardless of who was interviewed (i.e., mother, father or guardian): • The age of the parents at the birth of the child was lower in India and Latin America than the other regions • Fathers were older than mothers (4 to 6 years) in every region (p <0.0001) • The age of the fathers varied by region (p=0.0001) • Latin American fathers were younger and African fathers were older

10. Characteristics of the Children

11. Education Level of Parents

12. Urban Versus Rural More African and Indian families were from rural areas (p<0.0001)

13. Socioeconomic Status

14. Family History of Retinoblastoma

15. First Person to Notice a Problem

16. First Sign Noticed

17. Action Taken by Parents After First Sign

18. Who Parents Sought Advice From

19. Actions Taken After Initial Advice

20. Advice Given by Ophthalmologists

21. Extent of Disease

22. St Jude Stage by Region

23. St Jude Stage • Turkey had mostly Stage I and II patients • Latin America, India and Pakistan had mostly Stage II and III patients • Africa had mostly stage III and IV patients • These differences were significant (p<0.00001)

24. Association with Stage • Children from rural areas had higher stages of disease (p<0.0001) • Older children at diagnosis had higher stages of disease (p<0.0001) • Lower socioeconomic status was associated with higher stage of disease (p<0.0001) • The father’s education level was associated with stage • Lower educational levels were associated with higher stages of disease (p<0.0001)

25. Stage and Time Interval (First Sign to Diagnosis) • Longer intervals between the time the first sign was noted to diagnosis were associated with higher stages of disease in India and Latin America (statistically significant). • In part, this finding was influenced by the variations in stage distributions in different regions (e.g., African patients were mostly Stage IIIs or IVs at diagnosis).

26. Father’s Education Level and Time Interval (First Sign to Diagnosis) Longer time intervals were associated with the father’s education level in India and Latin America. There were longer time intervals between the time the first sign was noted to diagnosis in children whose fathers were illiterate in these regions.

27. Time Interval (First Sign to Diagnosis) and Initial Advice • Although the number of parents who sought initial advice from traditional healers was not large, there were longer time intervals until the children were diagnosed from the time that the first sign was noticed (median time 15 months).

28. Factors Influencing Parents Ability to Reach Treatment Centers • 81% of parents reported factors influencing their ability to bring their child to the treatment center. • The majority (75%) of parents reported more than one influencing factor.

29. Factors Influencing Parents Ability to Reach Treatment Centers

30. What were the “Other” Factors? • Lack of information provided to parents (e.g., not told it was cancer or where to get treatment) • Parents did not understand the seriousness of diagnosis • Misdiagnosis/misinformation given • Late diagnosis and late referrals related to problems navigating through health care systems • Inadequate treatment • Alternative or traditional therapies

31. The Role of the Media in Increasing Public Awareness • Public awareness campaigns should be delivered through culturally relevant “media” that is accessible, particularly to those living in rural or remote areas, who are poor, and/or who are illiterate • Radio for African countries • Radio and TV for India • TV for Latin America, Turkey and Pakistan

32. Conclusions • The majority of parents sought initial advice from ophthalmologists, but there were regional differences related to the types of doctors parents sought advice from. • There were regional differences related to the child’s extent of disease at diagnosis. • Families from rural regions or who were of lower socioeconomic status had children with more advanced disease at diagnosis. • Illiterate fathers had children with more advanced disease.

33. Conclusions • Multiple social factors influenced the parents ability to bring their child to the treatment facility, but other reasons were reported (e.g., inadequate information given by health care providers). • Many children treated by traditional healers may never reach treatment centers. • Increasing public awareness through culturally relevant campaigns should be further developed, particularly in countries where such campaigns do not exist and resources for treatment are scarce. • Professional education for health care professionals, including ophthalmologists is essential.

34. LS Arya/Vasantha Thavaraj Shripad Banavali Margarita Barnoya Inam Chitsike Muheez Durosinmi Sidnei Epelman Yolanda Ernst Clelia Erwenne Carlos Leal Twalib Ngoma TG Sagar Emel Unal/Nurdan Taciyldiz Kamer Uysal Alia Zaidi Thank You to All Participating Investigators

35. Special Thank You • Martha Flores-Rojo for translations of forms into Spanish • Interviewers from all participating institutions • Dr David Venzon, NCI for statistical analysis • INCTR CTO staff