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pink ribbon centre: a new hope

IN 2014, Hospital Tengku Ampuan Rahimah Klang (HTAR) embarked on the integration of a Patient Navigation Programme (PNP) in breast cancer patient management. Recognizing the importance of the programme, HTAR allocated an available meeting room (300sqft) to establish the Pink Ribbon Centre (PRC). 

Through a smart partnership with Cancer Research Malaysia, the centre received more than 2,000 registered clinic visits from patients - all of whom were warmly received by the PNP team that runs the operations of the clinic. 

“Some patients arrive at the centre with late-stage breast cancer. They have various reasons for this, but one common reason is that they had sought alternative treatment,” says Dr Hidayati Zainal, the dedicated Medical Officer in charge of the PRC at HTAR. 

“This is despite the fact that there is no proof that it cures breast cancer and it is more expensive. But it is easily accessible to the patients. This occurrence warrants us to understand the patients needs and fears in accessing medical treatment.

“In such cases, rather than force patients to seek treatment at the hospital, the navigators at the PRC continuously follow-up with the patients’ progress, empower them with more information, maintain a good rapport with them and their family members as well as provide a smooth access back to the PRC when they have not achieved the desired outcome through alternative treatment,” she adds.

Dr Hidayati’s observation is backed by data. Malaysia has the worst survival rate of breast cancer in the Asia Pacific: only 49% of patients are able to survive for five years. 

This is far off from Malaysia’s neighbour India and Thailand, which recorded a survival rate for five years of 52% and 63% respectively. To improve the survivorship of breast cancer patients treated at state-run hospitals, the PNP aims to reduce barriers faced by these patients to cancer care.

PNP: A New Horizon for Breast Cancer Care

Launched in 2015, the PNP is supported by funds raised at the Sime Darby Ladies Professional Golf Association (SDLPGA) tournaments from 2014 to 2017. 

Yayasan Sime Darby (YSD) was the main funder of the SDLPGA and a long-time support of Cancer Research Malaysia, committing RM42.2 million to the organisation from 2012 until 2020. 
The PNP team are led by Dato Seri Dr. Mohamed Yusuf Abdul Wahab at HTAR, who is also the Head General Surgical Services, Ministry of Health Malaysia and Dr. Azuddin Mohd Khairy, Head of the Surgical Department, HTAR.

The navigation team comprises of 7 personnel including Dr Hidayati (Medical Officer), Oncology Navigator Norlia Rahim and Surgical Navigator Nurul Ain Tajudeen from HTAR, Surgical Navigator Hani Zainal, Community Navigator Kavitha Muniandy, General Navigator Inderavathy Wallayan and PNP Coordinator Maheswari Jaganathan from Cancer Research Malaysia.

Norlia says since the establishment of the PRC, annual registered visits have increased from 1,018 in 2015 to 2,305 in 2017. The centre has successfully navigated 704 breast cancer patients from 2015 to 2017.

“We track a patient’s care process through milestones which are established through an agreement with other internal and external departments,” she adds.
PNP coordinator Maheswari says the navigators are trained to identify current or potential barriers faced by patients when they first visit the PRC.
“Patients who are referred on suspicion of breast cancer will spend at least 20 minutes in an interview session conducted by a navigator,” she says.

“The data collected from the interview session will be used to deliver a patient-centred care,” she adds. 

Based on the team’s observation in 2015 and 2016, out of the total breast cancer patients who visited the centre:
• 50% are mothers to dependants who are younger than 17 years old; 
• 47% reported non-communicable diseases such as hypertension and diabetes mellitus; 
• 34% believe in alternative medicine; 
• 34% had experienced life crises, such as a death in the family, divorce and extramarital affairs;  

• 27% lived more than 15km away from HTAR; and

• 8% had less favorable experiences at healthcare institutions.

Maheswari says women from low-income households face challenges when treatment begins. These include:

• Family members being unable to send patients to hospital due to work commitments;

• Being unable to pay for baby sitters during chemotherapy or radiotherapy sessions as well as hospital admissions;

• Existing financial constraints that hinder payment for costs such as clinic consultation fees, admission and surgery bills, transportation costs, eating healthy etc; 
• Lack of emotional and psychological support from family members;

• Difficulties in prioritizing responsibilities at home and self-management during treatment; and 
• Difficulties in coping with side-effects and complications due to treatment, which may require close monitoring at the hospital. 
Apart from medical navigation, the team also has an integrated community navigation which focuses on identifying and utilising external resources to aid the completion of a cancer patient’s treatment. 

Community navigator Kavitha says the goal of the PNP community navigation is to: 
• help patients improve self-sufficiency, including their basic needs and social welfare goals, in the best sustainable way; 
• empower patients to independently find solutions to the challenges faced in their lives and support them to achieve it; and 
• work with palliative consultants and the PRC medical officer to deliver a minimal package of palliative care for patients residing in areas not covered by hospice services. 

The community navigation includes home visits to help navigators understand the reality at a patient’s home and providing continuity of care for patients who are unable to access care. It also helps build trust between the caregiver, patient and family members, she adds.
“The community navigation also offers financial reimbursements to eligible low-income patients to reduce the out-of-pocket costs of treatment, help patients to attend follow-up sessions at the hospital and complete their recommended treatment. We have helped patients with transportation fares and clinic fees.”

A Boon For Many
The programme has notched considerable success so far. Following the first year of the PNP implementation:
• the one-week turnaround time for diagnostic resolution, i.e. mammogram, ultrasound and biopsy, improved from 74% to 96%;

• informing patients of results within 2 weeks improved from 58% to 80%; and

• defaulter rates among breast cancer patients reduced from 11.5% to 4.4%.

The success of the PNP demonstration model at HTAR has inspired other Ministry of Health hospitals to work with HTAR and Cancer Research Malaysia to replicate a similar model in their own hospitals.  

Hospital Queen Elizabeth II, Kota Kinabalu and Hospital Tuanku Ja’afar in Seremban, Negeri Sembilan have begun initial background work on the PNP implementation this year while Hospital Melaka and Hospital Umum Sarawak will be joining the ranks in 2019. 

Maheswari says moving forward, the team plans to focus on exploring the experiences faced by breast cancer patients, caregivers and family members. 

“We hope to implement systematic follow-ups during the grief and bereavement phase,” she adds. 

For now, the team hopes to find more sustainable ways to work with internal and external partners to improve the quality of the care process for breast cancer patients at state-run hospitals, in order replicate a similar model in other states.

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Last Updated:
02 Nov 2018
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