Under the banner “Together, making better decisions for with Her”, Cancer Research Malaysia (CRMY) and Roche (Malaysia) Sdn Bhd worked together on a campaign to increase awareness that modern decision making for breast cancer is no longer one where the doctor tells the patients what to do, but instead, one where doctors, patients and their loved ones make shared decisions with breast cancer patients in order to improve their health outcomes.
As part of the Campaign, CRMY officially launched two Patient Decision Aids for breast cancer patients, which is designed to assist patients in making shared treatment decisions together with their doctors.
Cancer or the big ‘C’ is a word that is dreaded by everyone. When women are diagnosed with breast cancer, they often feel lost, fearful and anxious. Many feel overwhelmed about how to make sense of the treatment jargons and how to make decisions about their treatment.
They often turn to their doctors, their family and their friends to make decisions and sometimes, fear of chemotherapy and hospital-based treatment can drive individuals to consider treatments which they perceive to be more “natural” but may not work.
“There have been many advances in breast cancer treatment, and it is no longer the case that all patients have the same treatment. Our research here in Malaysia has shown that patients are often overwhelmed and they need help to understand treatment options,” said Professor Datin Paduka Dr. Teo Soo Hwang, Chief Scientific Officer of CRMY.
“Our research was conducted in the past 3 years by interviewing Malaysian patients across all socioeconomic backgrounds and this culminated in Decision Aids which are now available in various local languages,” added Prof Lee Ping Yein, a primary care physician and lead author of one of the two Decision Aids.
“There have been significant advances in therapy and it is no longer the case that all patients have the same treatment. Four significant examples are that (1) breast cancer patients with HER2 positive disease may now need chemotherapy before surgery, that (2) some may need additional genetic tests to tell them if they need chemotherapy, whilst (3) some hormone receptor positive patients may need hormonal treatment but not chemotherapy, and finally (4) some individuals who inherited a BRCA gene may need new therapy that targets this altered gene function.
“But understanding the medical jargon can be difficult, which is why having a Decision Aid that seeks to provide balanced information in an easy-to-understand format could be important for our local patients,” added Associate Professor Dr Adlinda Alip, Consultant Oncologist at University Malaya Medical Centre (UMMC) and a key expert in the development team.
The Decision Aids helps to provide additional information that supports the information provided by doctors.
“It is a tool that was developed by a multi-disciplinary team of experts, from doctors of different specialties, to nurses and navigators. They focused on helping patients identify what is important to them, and through that self-awareness, enabled them to choose treatment options that suits them best,” said Prof Dr Nur Aishah Mohd Taib, Consultant Breast Surgeon at UMMC and key expert in the development team.
“Patients were part of the development of the Decision Aids and as a result, the Aids will help because it gives very clear patient-focused information, not just medical information, but provides structure to identify individual treatment goals,” added Dr Sylvia McCarthy, Medical Director of HOSPIS Malaysia and a key expert in the development team.
At a recent launch of the Patient Decision Aid amongst patient group organisations, the team conducted a survey to understand patient’s decision-making patterns in their journey – from diagnosis to treatment. Of the 34 survey participants, 94% felt it was important that patients are empowered when it comes to making decisions about their treatment.
The survey also revealed that at present, physicians (47%) are the biggest influencers in making decisions on patient’s treatment choices while 32% replied that patients, doctors, caregivers and the community have some form of influence on decision-making for treatments. Respondents identified 3 top areas needed in navigating their journey: have a better understanding of treatment options, financial support and someone to help guide patients in their next steps from diagnosis to treatment.
“We felt all these findings were very relevant and in line with our event’s objective today,” Professor Datin Paduka Dr. Teo added.
The potential of the decision aids highly resonates with many practitioners, including Dr Natasha Mohd Hashim, a Consultant Clinical & Radiation Oncologist and Associate Professor See Mee-Hoong, a Consultant Oncoplastic Surgeon, who noted that a Multi-Disciplinary Team (MDT) approach is key for shared decision making, as treating breast cancer successfully may require multiple types of treatments like surgery, radiotherapy, chemotherapy and targeted therapy, and also different considerations such as recovery and emotional support.
“The decision tool will greatly benefit both the treating doctors and patients who navigate through the myriad of approaches to treat the disease and decide on the best strategy. For example, in HER2 positive disease, giving chemotherapy plus anti-HER2 before surgery is the better option as it provides better response and improves long term survival.
“HER2 positive breast cancer has been deemed as belonging to a poor prognosis group for a long time, but now as treatments focusing on HER2 receptors are available, more patients are able to experience long and good survival,” Dr Natasha added.
Associate Professor See Mee-Hoong mentioned that the role of the surgeon has also evolved over the years. “Twenty years ago, nearly all patients would have been recommended to undergo surgery first and then chemotherapy and radiotherapy after surgery.
“But now, because of medical advances, many patients in early breast cancer, especially HER2 positive, are recommended to have targeted therapy and chemotherapy before surgery, which is also called neoadjuvant therapy. This would enable the doctor to see if the treatment is working and provide the subsequent flexibility in personalising the treatment plan accordingly to optimise the chances of survival, thus bringing together the MDT approach, and making a shared decision with the patient,” she said.
Dr Yatela Zainal Abidin, CEO of Yayasan Sime Darby expressed that the charity foundation is proud to be in collaboration with CRMY in this important initiative. “Yayasan Sime Darby is blessed to have partnered with CRMY for 9 years to raise funds through the Sime Darby LPGA Golf Tournament to enable the establishment of one-stop centres and the decision aids to help low-income breast cancer patients.
“We hope that our continual long term partnership with CRMY will assist to expand the programme to benefit even more women from low-income families, especially those in the B40 group who critically need the assistance, to be empowered to make their own decisions to survive breast cancer.”
Ms. Wong Sit Yin, the Healthcare Access and Corporate Affairs Director at Roche (Malaysia) Sdn. Bhd. lauded the initiative of the patient decision aid by CRMY. “We at Roche are pleased to be supporting this launch event, as we believe that patients are at the core in everything we do, and we truly believe in assisting a breast cancer patient’s journey in making the right treatment choice for themselves.
“This year, as we celebrate our 125 years anniversary, we hope partnerships like today with CRMY, will help guide Roche’s next 125 years towards a sustainable, healthy future, as we enable and empower more patients and improve survival for all.”
The development team for the Decision Aid for patients with Early Breast Cancer were Prof Dr Ng Chirk Jenn, Prof Lee Ping Yein, Professor Dr Nur Aishah Md Taib, Prof Dato Dr Yip Cheng Har, Assoc. Prof Dr Adina Abdullah, Prof Khatijah Lim Abdullah, Madam Lee Sian Boy, Prof Datin Paduka Dr Teo Soo Hwang, Dr Ong Siu Ching and Dr Yamuna Rajoo. The development team for the Decision Aid for patients with Metastatic Breast Cancer were Prof Lee Ping Yein, Prof Datin Paduka Dr Teo Soo Hwang, Assoc. Prof Cheong Ai Theng, Prof Sazlina Shariff Ghazali, Dr Aneesa Abdul Rashid, Professor Dr Nur Aishah Md Taib, Assoc. Prof Dr Adlinda binti Alip, Prof Dr Ng Chirk Jenn, Dr Sylvia McCarthy, Dr Chen May Feng, Mrs Maheswari Jaganathan, Dr Ong Siu Ching, Dr Yamuna Rajoo, Dr Ong Soo Ying, and Dr Pua Tze San. The Decision Aids layouts were designed by Mr Adam Wong and Miss Emily Yeoh from Spring Design Malaysia.
The Patient Decision Aids for breast cancer patients are available for patients who register with Cancer Research Malaysia. To sign up for the patient decision aids, please click here.