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  • Oncologist-led BRCA counselling improves access to cancer genetic testing in middle-income Asian country, with no significant impact on psychosocial outcomes

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Cancer genetics
Original research
Oncologist-led BRCA counselling improves access to cancer genetic testing in middle-income Asian country, with no significant impact on psychosocial outcomes
  1. Sook-Yee Yoon1,
  2. Siu Wan Wong1,
  3. Joanna Lim1,
  4. Syuhada Ahmad1,
  5. Shivaani Mariapun1,
  6. Heamanthaa Padmanabhan1,
  7. Nur Tiara Hassan1,
  8. Shao Yan Lau1,
  9. Gaik-Siew Ch'ng2,3,
  10. Muzhirah Haniffa3,
  11. Winnie P Ong3,
  12. Kavitha Rethanavelu3,
  13. Lip Hen Moey3,
  14. Wee Teik Keng3,
  15. Jamil Omar4,
  16. Mohd Norazam Mohd Abas4,
  17. Chee Meng Yong5,
  18. Vickneswaren Ramasamy5,
  19. Mohd Rushdan Md Noor6,
  20. Ismail Aliyas6,
  21. Michael C K Lim7,
  22. Anuradha Suberamaniam8,
  23. Noor Azmi Mat Adenan7,
  24. Zatul Akmar Ahmad7,
  25. Gwo Fuang Ho9,
  26. Rozita Abdul Malik9,
  27. Suguna Subramaniam10,
  28. Boom Ping Khoo10,
  29. Arivendran Raja10,
  30. Yeung Sing Chin10,
  31. Wee Wee Sim11,
  32. Beng Hock Teh11,
  33. Swee Kiong Kho12,
  34. Eunice S E Ong12,
  35. Pei Jye Voon12,
  36. Ghazali Ismail13,
  37. Chui Ling Lee13,
  38. Badrul Zaman Abdullah13,
  39. Kwong Sheng Loo13,
  40. Chun Sen Lim13,
  41. Saw Joo Lee14,
  42. Keng Joo Lim Lim15,
  43. Mohamad Nasir Shafiee16,
  44. Fuad Ismail17,
  45. Zarina Abdul Latiff18,
  46. Mohd Pazudin Ismail19,
  47. Mohamad Faiz Mohamed Jamli20,
  48. Suresh Kumarasamy21,
  49. Kin Wah Leong22,
  50. John Low23,
  51. Mastura Md Yusof23,
  52. Ahmad Muzamir Ahmad Mustafa24,
  53. Nor Huda Mat Ali24,
  54. Mary Makanjang25,
  55. Shahila Tayib26,
  56. Nellie Cheah27,
  57. Boon Kiong Lim7,
  58. Chee Kin Fong28,
  59. Yoke Ching Foo29,
  60. Matin Mellor Abdullah29,
  61. Teck Sin Tan28,
  62. Doris S Y Chow30,
  63. Kean Fatt Ho30,
  64. Rakesh Raman30,
  65. Ahmad Radzi23,
  66. Azura Deniel31,
  67. Daren C Y Teoh32,
  68. Soo Fan Ang33,
  69. Joseph K Joseph34,
  70. Paul Hock Oon Ng23,
  71. Lye-Mun Tho35,
  72. Azura Rozila Ahmad35,
  73. Ileena Muin36,
  74. Eveline Bleiker37,
  75. Angela George38,
  76. Meow-Keong Thong39,
  77. Yin Ling Woo7,
  78. Soo Hwang Teo40,41
  1. 1 Genetic Counselling, Cancer Research Malaysia, Subang Jaya, Selangor, Malaysia
  2. 2 Genetics, Penang Hospital, Penang, Penang, Malaysia
  3. 3 Genetics, Hospital Kuala Lumpur, Kuala Lumpur, Wilayah Persekutuan, Malaysia
  4. 4 Gynaeoncology, Institut Kanser Negara, Putrajaya, Wilayah Persekutuan Putra, Malaysia
  5. 5 Gynaeoncology, Hospital Ampang, Ampang, Malaysia
  6. 6 Gynaeoncology, Hospital Sultanah Bahiyah, Alor Setar, Kedah Darul Aman, Malaysia
  7. 7 Department of O&G, University of Malaya, Kuala Lumpur, Wilayah Persekutuan, Malaysia
  8. 8 Gynaeoncology, University of Malaya Medical Centre, Kuala Lumpur, Wilayah Persekutuan, Malaysia
  9. 9 Clinical Oncology, University of Malaya, Kuala Lumpur, Wilayah Persekutuan, Malaysia
  10. 10 Gynaeoncology, Hospital Wanita Dan Kanak-Kanak Sabah, Kota Kinabalu, Malaysia
  11. 11 Gynaeoncology, Hospital Umum Sarawak, Kuching, Sarawak, Malaysia
  12. 12 Oncology, Hospital Umum Sarawak, Kuching, Sarawak, Malaysia
  13. 13 Gynaeoncology, Hospital Sultan Ismail, Johor Bharu, Johor Darul Ta’zim, Malaysia
  14. 14 Gynaeoncology, Hospital Raja Permaisuri Bainun, Ipoh, Perak, Malaysia
  15. 15 Gynaeoncology, KPJ Johor Specialist Hospital, Johor, Malaysia
  16. 16 Gynaeoncology, Hospital Universiti Kebangsaan Malaysia, Cheras, Kuala Lumpur, Malaysia
  17. 17 Oncology, Universiti Kebangsaan Malaysia Medical Centre, Kuala Lumpur, Wilayah Persekutuan, Malaysia
  18. 18 Clinical Genetics, Universiti Kebangsaan Malaysia Medical Centre, Kuala Lumpur, Wilayah Persekutuan, Malaysia
  19. 19 Gynaeoncology, Hospital Universiti Sains Malaysia, Kota Bahru, Kelantan, Malaysia
  20. 20 Gynaeoncology, Hospital Tuanku Ja'afar Seremban, Seremban, Negeri Sembilan, Malaysia
  21. 21 Gynaeoncology, Gleneagles Penang, Penang, Malaysia
  22. 22 Oncology, Gleneagles Penang, Penang, Penang, Malaysia
  23. 23 Oncology, Pantai Hospital Kuala Lumpur, Kuala Lumpur, Wilayah Persekutuan, Malaysia
  24. 24 Gynaeoncology, Hospital Tengku Ampuan Afzan, Kuantan, Pahang, Malaysia
  25. 25 Gynaeoncology, KPJ Sabah Specialist Hospital, Kota Kinabalu, Sabah, Malaysia
  26. 26 Gynaeoncology, Penang General Hospital, Georgetown, Pulau Pinang, Malaysia
  27. 27 Oncology, Loh Guan Lye Specialist Centre, Penang, Malaysia
  28. 28 Gynaeoncology, Subang Jaya Medical Centre, Subang Jaya, Malaysia
  29. 29 Oncology, Subang Jaya Medical Centre, Subang Jaya, Selangor, Malaysia
  30. 30 Oncology, Mount Miriam Cancer Hospital, Tanjong Bungah, Penang, Malaysia
  31. 31 Oncology, KPJ Ampang Puteri Specialist Hospital, Ampang, Kuala Lumpur, Malaysia
  32. 32 Oncology, KPJ Sabah Specialist Hospital, Kota Kinabalu, Sabah, Malaysia
  33. 33 Oncology, Penang Adventist Hospital, Penang, Penang, Malaysia
  34. 34 Oncology, Sunway Medical Centre, Bandar Sunway, Selangor, Malaysia
  35. 35 Oncology, Beacon Hospital Sdn Bhd, Petaling Jaya, Malaysia
  36. 36 Oncology, Hospital Kuala Lumpur, Kuala Lumpur, Wilayah Persekutuan, Malaysia
  37. 37 Department of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, Noord-Holland, The Netherlands
  38. 38 Oncology, Royal Marsden Hospital Chelsea, London, London, UK
  39. 39 Genetic Medicine Unit, University of Malaya Medical Centre, Kuala Lumpur, Wilayah Persekutuan, Malaysia
  40. 40 Cancer Prevention and Population Science, Cancer Research Malaysia, Subang Jaya, Selangor, Malaysia
  41. 41 University Malaya Cancer Research Institute, Universiti Malaya, Kuala Lumpur, Wilayah Persekutuan, Malaysia
  1. Correspondence to Sook-Yee Yoon, Familial Cancer, Cancer Research Malaysia, Subang Jaya, Selangor, Malaysia; sookyee.yoon{at}cancerresearch.my

Abstract

Background Identifying patients with BRCA mutations is clinically important to inform on the potential response to treatment and for risk management of patients and their relatives. However, traditional referral routes may not meet clinical needs, and therefore, mainstreaming cancer genetics has been shown to be effective in some high-income and high health-literacy settings. To date, no study has reported on the feasibility of mainstreaming in low-income and middle-income settings, where the service considerations and health literacy could detrimentally affect the feasibility of mainstreaming.

Methods The Mainstreaming Genetic Counselling for Ovarian Cancer Patients (MaGiC) study is a prospective, two-arm observational study comparing oncologist-led and genetics-led counselling. This study included 790 multiethnic patients with ovarian cancer from 23 sites in Malaysia. We compared the impact of different method of delivery of genetic counselling on the uptake of genetic testing and assessed the feasibility, knowledge and satisfaction of patients with ovarian cancer.

Results Oncologists were satisfied with the mainstreaming experience, with 95% indicating a desire to incorporate testing into their clinical practice. The uptake of genetic testing was similar in the mainstreaming and genetics arm (80% and 79%, respectively). Patient satisfaction was high, whereas decision conflict and psychological impact were low in both arms of the study. Notably, decisional conflict, although lower than threshold, was higher for the mainstreaming group compared with the genetics arm. Overall, 13.5% of patients had a pathogenic variant in BRCA1 or BRCA2, and there was no difference between psychosocial measures for carriers in both arms.

Conclusion The MaGiC study demonstrates that mainstreaming cancer genetics is feasible in low-resource and middle-resource Asian setting and increased coverage for genetic testing.

  • genetic counseling
  • genetic testing
  • gynecology
  • health services research
  • medical oncology

Data availability statement

Data are available on reasonable request. The datasets generated during and/or analysed during the current study are available from the corresponding author on reasonable request.

https://doi.org/10.1136/jmedgenet-2020-107416

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    Data availability statement

    Data are available on reasonable request. The datasets generated during and/or analysed during the current study are available from the corresponding author on reasonable request.

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    Footnotes

    • S-YY, SWW and JL are joint first authors.

    • M-KT, YLW and SHT are joint senior authors.

    • Contributors Study design: S-YY, YLW, SHT. Writing group: YSY, SHT, SWW, JL, NSAB, SM, HM, EB, AG. Genetic analyses: JL, SYL. Statistical analysis: SM, JL. Recruitment, counselling patients and provided DNA samples and/or phenotypic data: G-SC, MH, WO, KR, LHM, WTK, JO, MNMA, CMY, VR, MRMN, IA, ML, AS, NAMA, ZABA, GFH, RAM, SS, BPK, AR, YSC, WWS, BHT, SKK, EO, PJV, GI, CLL, BZMA, KSL, CSL, SJL, KJL, MNS, FI, ZAL, MPI, MFMJ, SK, KWL, JL, MMY, AMAM, NHMA, MM, ST, NC, BKL, CKF, YCF, MMA, TST, DC, KFH, RR, AR, AD, DT, SFA, FF, PN, L-MT, ARA, IM, EB, AG. Supervised the project: SHT, YLW, MKT. All authors read and approved the final version of the paper.

    • Funding Yayasan Sime Darby, Yayasan PETRONAS, Khind Starfish Foundation, AstraZeneca External Investigator Grant.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.