KUALA LUMPUR, August 11 — Universiti Malaya (UM) and Kuala Lumpur Hospital (HKL) have launched Malaysia’s first Needs Assessment Tool for Breast Cancer to enable a more patient-centric approach to cancer treatment.
The tool, dubbed NeAT-BC – developed by UM’s Social and Preventive Medicine Department, in collaboration with HKL’s radiotherapy and oncology department together – is the first Malaysian tool tailored to assess the degree to which health care providers — public, private, and charitable — are meeting the needs of breast cancer patients living in Malaysia.
“‘For the wellbeing of patients’ – for a long time for us, wellbeing means living longer, right? I say ‘us’ because I’m also a medical doctor, and for a long time, I always thought that living longer or survival rates are everything in oncology.
“But as I worked with all these experiences, I realised that that’s what we (medical practitioners) think is important, but not for patients,” Dr Nirmala Bhoo-Pathy, principal investigator of the Development and Validation of a Dual Language (English and Malay) Needs Assessment Tool For Breast Cancer (NeAT-BC) study, said at the launch of NeAT-BC at HKL last July 7.
“When we talk about patient-centred outcomes, it focuses on beliefs, preferences, and needs [of the patient] in contrast to physician-centred care.
“Patient-centred outcomes are all about the patient; what they want. Sometimes for researchers, for clinicians, things like return to work, out-of-pocket spending – these are things that we never talk about,” added the UM professor of social and preventive medicine.
NeAT-BC takes the form of a survey and is designed to identify and meet the unmet needs of breast cancer patients, defined by the study to be the issues that patients experience because of their cancer and need help or support with.
Based on the study, NeAT-BC can be administered to patients by an interviewer or can be self-administered and will take approximately 25 minutes to complete. The survey is composed of 48 statements that fall into five categories: emotional support, social and intimate relationships, hospital appointments, personal care and health and information and services.
Patients undergoing the assessment will rate each statement on a scale of one to five (one: not applicable, two: no need or satisfied, three: low or a little, four: moderate or quite a bit, and five: high or very much) on the relevance of the statements to them.
Once patients complete the survey, it will be collected from them, and the quantitative data collected from these surveys by the health service provider can be used to improve and identify gaps in its services to better meet the needs of the patients.
Approximately Five Years To Develop NeAT-BC
Dr Nirmala said that the research team dedicated approximately four to five years in developing the list of statements that will be used in hospitals and other health care settings, such as health non-government organisations (NGOs) to assess the needs of patients.
She explained how the list of statements was created after holding 20 qualitative interviews, with each interview session lasting hours and spanning many patients.
“We started off with prior qualitative interviews. We had like 20 interviews, and each interview had many patients. So, we spoke [for] hours, [and] we actually recorded all the conversations and scientifically extracted the information; all the words that patients said.
“And from that we also developed our list. And then we again got all these experts to look back [at the list]. And when I say experts, it is also the patients and the cancer support group members. They are the experts. We got them involved. And then obviously we also got clinicians, family medicine specialists, people who are regularly not a part of the traditional model of cancer care.
“And of course, we did a literature search to see what else have we missed. And we came up with a long list of what patients need, and then it went through a validation process, a scientific proof process.
“So after many, many rounds of the validation process, we had the tool, and it has 48 questions.”
While the task was arduous enough on its own, the Covid pandemic further challenged the team and delayed the research.
Diverse Representation Of Study Subjects Across University, MOH, Private Hospitals
Lead researcher Kong Yek-Ching said that the Covid-19 pandemic forced researchers to halt their phase two subject recruitment process, around six months at the earliest after the first March 2020 movement control order.
So, towards the end of 2020, researchers got their NGO partners to help identify potential participants from their support groups.
“We then switched from in-person recruitment to a phone interview with patients that agreed to be contacted. It really took a village!” Kong told CodeBlue.
In addition to the pandemic challenges, Kong also said that the team revised their phase two study after receiving feedback from reviewers.
“It did extend the project timeline by a couple of months, plus some stressful days, but we still went ahead with it to really ensure that our developed tool is robust.”
The study was divided into two parts: phase one and two.
In the first phase or co-design phase of the study, researchers recruited two expert panels of eight and five members respectively to provide a rating on the relevance of the list of generated statements that researchers had come up with after their interviews, and to provide their recommendation on the measurement scale to be used for the questionnaire.
Once this was done, the draft survey was sent to phase two candidates, who determined if the statements on the list met their various needs as breast cancer patients.
To ensure adequate representation of patients from diverse ethnic and socioeconomic backgrounds, participants for phase two of the study were recruited from University of Malaya Medical Centre (UMMC); two Ministry of Health (MOH) hospitals, HKL and the National Cancer Institute (IKN); and Subang Jaya Medical Centre (SJMC), a private hospital.
A total of 315 Malaysian women living with breast cancer were recruited, with the majority aged between 41 and 60 years. About 59.7 per cent of the participants were of Malay ethnicity, 26.0 per cent, were ethnic Chinese and 11.5 per cent were ethnic Indian.
Half of the participants (50.5 per cent) had at least secondary school education, 36.2 per cent were retired, and 68.9 per cent came from low-income households. Approximately 30 per cent owned either private or employer-sponsored health insurance.
The majority of subjects were recently diagnosed with breast cancer, and 29.2 per cent had a Stage Three cancer diagnosis, while 25.3 per cent were diagnosed with metastatic disease.
Dr Nimala said that seeking patients from government hospitals was a priority to ensure a more diverse group of subjects.
Why Malaysia Needs A Tailored Tool For Breast Cancer Needs Assessment
Despite countries in the West having created similar needs assessment tools, Dr Nirmala said that it is crucial for Malaysia to have its own tool, as the tools developed in the West do not address the unique needs of Malaysian breast cancer patients.
Despite attempts to culturally adapt these foreign tools, the Western setting these tools were developed in led to the creation of tools that were culturally specific to the attitudes and prioritisation of care between patient populations from those different settings.
“We have in the past attempted to use some of the tools (developed by other countries), and one of the questions that was asked is, ‘Do you need a hospital bed with a view?’ That was one of the questions in the needs assessment tool, and this tool came from the Netherlands where everyone gets a nice bed, and now, they’re asking the patients, ‘Do you want a bed with a view? Does it matter to you?’” Dr Nirmala said during her speech at the launch of NeAT-BC.
“And we live in a country that has no beds, right? You’re lucky to get a bed. I’m not ridiculing the tool, but it’s just that it points out the fact that the tool is very dependent on the health care system, what is available, and also the cultural values of patients.
“In our settings, we are talking about traditional and complementary medicine, but at that time in the high-income countries, they think that’s something that most of the patients would not look at. So, we need to have a locally developed tool to take all these factors into account.”
Unlike the Western needs assessment tools, the Malaysian NeAT-BC asks participants to consider statements such as: “I need my close family members to receive emotional support; I need my oncologist to openly discuss traditional and complementary medicine with me; I need all my hospital appointments to be set on the same day whenever possible and I need to help to find a new job after my cancer diagnosis.”
According to the NeAT-BC study, one of the major factors that Malaysian women with breast cancer experience is psychological distress at the time of the cancer diagnosis, which persists for 12 months after diagnosis.
The qualitative studies conducted by the team also revealed major gaps in accessing cancer support groups, as well as experiences with discrimination and stigma due to cancer diagnosis. The study found unmet financial needs faced by cancer patients, such as health insurance-related reimbursements.
Interpretation Of NeAT-BC Depends On Resources
While the NeAT-BC aims to identify the needs of breast cancer patients, it does not in itself propose suggestions for change or give any explicit guidelines on how to meet patients’ needs.
Dr Nirmala said that how health service providers want to interpret and implement the data extrapolated from the results will depend entirely on them, but the data gained from the NeAT-BC will enable health care workers to fight for and address the needs of their patients.
“How you want to interpret depends on the resources that you have. Some places want to help everyone, and they are able to help everyone. I can give an example like AKPK, which is the Credit Counselling and Debt Management Agency. They are open, they said, ‘Anyone who walks in.’ So, in that instance, if somebody ticks, ‘I have moderate need to very high need’, they will be able to accept everyone.
“But if you are in a situation where you can only offer help to people who are in very high need, basically the end user decides at which point they want to intervene. We will not say what is the cut-off point.
“For instances where you are able to measure and you can demonstrate very highly, then that is the area where the hospital management can evaluate. So, I think that using the tool for a period of two months or whatever will help to say that this is the area we need to act to develop new services,” Dr Nirmala said.
“I know I say it and it sounds very nice but you need resources, but at least you have numbers to back your evidence. Most of the time, you have anecdotal statements and it is very hard to show on paper, but if you have a tool, you can say, ‘80 per cent of patients complain about this and they say they need this…’
“So, how you want to react and so on is up to management, but there is supporting data. So, this evidence-based for supportive data.”
Aiding managers to make positive and effective change is not the only way in which the results from the NeAT-BC can be utilised.
Changes can also be small where patients, based on their survey results, can be better connected to people who can address their needs and concerns. The results can also aid patient navigators – people who help patients and their families and caregivers to get the health care and other resources they need to be as healthy as possible.
Patient navigators also help them overcome barriers to screening and diagnosis, cancer care, and resources needed after cancer treatment.
“There’s no point just collecting (the data) and you don’t do anything, so we will try to at least get them in touch with the right person. That’s why referral to relevant resources. It’s almost like a navigational tool. If you don’t have a patient navigator, this can help you to decide where to navigate patients apart from that clinical consultation that they get,” Dr Nirmala explained.
“And then for patient navigators, they can do things systematically. It’s like a checklist. Which are the areas that need help? And then, I can decide. So, that is in the clinical setting.”
In a research setting, Dr Nimala said that the NeAT-BC can be used to predict certain patient outcomes. For example, researchers can study the progress of patients whose needs have been met versus those whose needs have not been met.
NGOs as well can benefit from NeAT-BC by using it as a means to assess whether they are meeting the needs of patients and a way for them to restructure or organise their services to better cater to patients’ unmet needs.
Ultimately, Dr Nirmala hopes that the NeAT-BC will become a widely used staple in various settings, saying that the test can be used by anyone so long as they give credit for the tool as it is protected under copyright law.
“There have been a lot of resources that have been put in to develop needs assessment tools for individuals with cancer by our team in UM (University Malaya). It is therefore sincerely wished that the NeAT-BC will be widely used in various settings to make the world a better place for women living with breast cancer and beyond.
“It is also felt that at least in the Malaysian setting, there is no further need to reinvent the wheel by attempting to create new needs assessment tools for support and survivorship in the context of cancer.
“The tools that are developed by our team could be adopted or even adapted as necessary.”
The NeAT-BC can be found in the Development and Validation of a Dual-Language (English and Malay) Needs Assessment Tool for Breast Cancer (NeAT-BC) research paper.