Receiving a diagnosis of cancer is likely to be a life-changing moment.
From some points of view, you immediately enter into a state of survivorship, which basically lasts for the rest of your life.
Explains Universiti Malaya cancer epidemiologist Associate Professor Dr Nirmala Bhoo Pathy: “Cancer survivorship is different from cancer survival.
“Cancer survival simply means, this patient has been diagnosed (with cancer and) how long they live; when they pass on, then we say that is the duration, that is the (period of) survival.
“But cancer survivorship actually refers to the life of the patient after the moment of diagnosis until end of life, so everything that comes in between – the psychological aspects, the physical aspects – plays a part.”
It is, simply put, how long you live with cancer versus how you live with cancer.
And the latter point is becoming increasingly important as more and more patients are living longer after being diagnosed with cancer, either free of cancer or with some remaining cancer that is under control.
However, according to Assoc Prof Nirmala, the area often overlooked in cancer manage-ment is the support of those already living with cancer, especially in psychological and financial terms.
Low quality of life
While the focus of cancer management usually revolves around the types of treatments – e.g. surgery, chemotherapy, radiotherapy – available and suitable for the patient, there is also a big need for psychosocial support.
Part of the 2012-2014 Asean Costs in Oncology (Action) study looked at the health-related quality of life of cancer patients throughout the Asean region (except for Singapore and Brunei).
According to Assoc Prof Nirmala, who was the principal investigator for Malaysia in the study, the results for our country were rather surprising.
“Based on the questionnaires that we gave our patients, we were able to score their health-related quality of life.
“When we measured at baseline (within 12 weeks of diagnosis), three months and one year, we did not see improvement in quality of life following cancer diagnosis, when we would have expected that once treatment is completed, patients’ quality of life would gradually improve,” she says.
For example, symptoms like nausea and vomiting, dyspnoea (difficulty in breathing) and diarrhoea were all reported as being worse at one year after diagnosis, compared to at baseline.
Similarly, levels of anxiety and depression, which were expected to decrease by one year after diagnosis when most treatment should have been completed, were conversely higher instead.
According to the results published in the June edition of the medical journal Psycho-Oncology, patients reporting moderate or severe anxiety rose from 38.9% at baseline to 53.9% at one year.
For depression, 21.3% of patients had moderate or severe depression at baseline, which increased to 27.2% at one year.
More worrying is that just over half of patients (51.6%) were mildly depressed at one year.
The study also found that those aged 65 and above were both less anxious (40.9%) and depressed (18.5%) one year after their cancer diagnosis, compared to those aged below 45 (46.8% anxious and 25.3% depressed).
Interestingly, it was reported that those with low income (75% and below the mean national income) had better physical, emotional and general health functions, as well as less pain and fatigue, compared to those with high income (125% and above the mean national income).
In addition, patients with other pre-existing diseases were found to have lower physical and emotional functions, as well as more fatigue.
Need for support
The high depression and anxiety scores may be partly due to the patients having higher expectations of the health system than what they receive, says Assoc Prof Nirmala.
“It also means that we need to beef up the supportive care that is provided for cancer patients.
“And traditionally, when we talk about supportive care, the general understanding among medical professionals is that we are talking about symptom and side effect management.
“But what I feel – my personal theory – is that it is more than that; patients have informational needs, psychological/emotional needs.
“And those needs are things that traditionally, we may have overlooked and we have not enough resources to support.”
She notes that while the National Strategic Plan for Cancer Control Programme (NSPCCP) 2016-2020 covers a lot of areas in cancer management, the topic of cancer survivorship is not one that is specifically addressed on its own.
“We need to be mindful that there are other aspects of supportive care that we have overlooked and that there is room for improvement,” she says.
“In the current NSPCCP, all this sits under rehabilitation. But rehab is a very simplistic term, which means very traditional therapies like physiotherapy, occupational therapy and things like that.
“Supportive care is not just about rehab, it’s much bigger than that,” she adds.
Among the areas not included under rehab, but are important to cancer patients and survivors, are psychologi-cal and emotional support, diet and nutrition, and sex.
Assoc Prof Nirmala shares that she and her colleagues are in the process of conducting studies to pin down the most important needs of cancer patients, so that options for better supportive care can be discussed and implemented.
“The good news is that it may not necessarily be expensive.
“Providing that supportive service to cancer patients need not be an expensive affair, simply because it is not only the health system that needs to do the job alone, other ministries and other partners can come in and collaborate to ensure that patients get better supportive care as soon as they are diagnosed.”
She notes that, for example, psychological and emotional support can come in the form of cancer survivor groups or trained volunteers from non-governmental organisations, rather than strictly psycholo-gists.
Another area that might be an important contributing factor to the continuing high levels of anxiety and depression among cancer patients is money.
According to data from the Action study, one in two Malaysian cancer patients (51.4%) had spent more than one-third of their annual household income on expenses related to their cancer within a year of their diagnosis. This is considered a personal financial catastrophe.
And this is despite 18.9% of them having private insurance coverage.
In fact, 45% of Malaysian cancer patients who were previously solvent, were pushed into economic hardship (inability to make necessary household payments, e.g. for housing, utilities, food and other healthcare) due to their cancer care expenses within a year of their diagnosis.
Interestingly, over half of the patients (51.4%) were pushed into financial catastrophe due to a combination of medical and non-medical cancer-related expenses.
Says Assoc Prof Nirmala: “We would have thought that the patients are spending a lot out-of-pocket because of medical costs (e.g. drugs and surgery, medical equipment, hospital stay and consultation fees).
“But in Malaysia, we found that the non-medical costs is also a big contributor to financial distress.
“So, when you talk about non-medical costs, it’s things like transport to the cancer centre, accommodation for the family/caregiver, parking, childcare – things that are non-medical, but are directly related to the cancer.”
Other expenses in this area include vitamins and other supplements, as well as specific items needed for certain cancers – e.g. breast prostheses and special bras for breast cancer patients who undergo mastectomy, and colostomy bags for colorectal cancer patients – which can all be quite expensive.
As high as 53% of families had used their savings meant for other uses to help cover the patient’s cancer care expenses, and this leads to worry over their children’s futures.
And it is not just about money going out, the cancer patient and their caregiver also often suffer from loss of income, especially those who are self-employed or who work daily jobs or in small companies.
“Some of them also think about what happens if they have a recurrence, what would happen to their insurance – so those are the fears they live with,” says Assoc Prof Nirmala.
“So, they have to think about putting aside money if they have a recurrence, and also for their children’s future.”
She hopes that when the studies she and her colleagues are currently doing on needs of cancer patients are completed, the results will be able to help all the relevant health stakeholders better meet those needs.