Press release – for immediate release
7 December 2023
Latest survey finds cancer patients/ caregivers got 90 pieces of information first 3 months of diagnosis
8 in 10 were unable to verify online cancer related information
Nearly 4 in 10 report felt unwell after taking advice from friends, relatives or online
HKACS urges improved cancer health literacy and comprehensive support
Upon receiving a cancer diagnosis, the minds of most patients and their caregivers go blank. Other than listening to doctor’s explanation and undergoing various examinations and treatments, they are flooded with a wealth of cancer related information, either shared by friends and relatives or from online source. According to the survey conducted by the Hong Kong Anti-Cancer Society (HKACS), nearly 8 in 10 cancer patients and caregivers reflected that they were unable to verify cancer-related information from online sources. Apart from the information received from their attending medical professionals, patients and caregivers received an average of 90 pieces of cancer related information in the first 3 month of diagnosis. Over 70% of this information did not come from medical professionals or healthcare agencies. Nearly 4 in 10 felt unwell after following the advices from others. In light of these situations, HKACS urges improved cancer health literacy, especially for cancer patients and caregivers. They should seek comprehensive support when appropriate.
Insufficient health literacy may obstruct cancer treatment.
Health literacy refers to one’s ability to obtain, understand, verify, and apply health related information, to maintain and promote their health, and to prevent diseases or recognise symptoms to obtain timely treatments. Facing serious diseases like cancer, health literacy becomes more critical. Studies have shown that cancer patients with lower health literacy are 18 times more likely to experience adverse drug reactions[1]. Their overall health-related quality of life, physical and emotional wellbeing are 8% lower.[2]。
Average oncologist’s visit at public hospital: 13 mins; 77% look for information online.
To gauge the health literacy of cancer patients and caregivers, the HKACS conducted a “Health literacy survey of cancer patients and caregivers” from 6th September to 11th November, interviewing a total of 236 participants. The survey reveals the average duration of each oncologist’s visit is 13 minutes in public hospitals, and 24 minutes in private hospitals. 51% reflected that they had experienced of not able to clear all their doubts due to time shortage, while 77% of them would look for information online instead.
Overwhelming cancer related information, 4 in 10 verify with common sense.
Faced with an unexpected diagnosis, apart from the information from their attending medical professionals, cancer patients and caregivers received an average of 90 pieces of cancerrelated information in the first 3 months of diagnosis. Among these, only 28% originated from medical professionals or healthcare agencies. When asked how they verify cancer-related information from other sources, 65% said they would search online, while 39% said they would verify with common sense.
8 in 10 are unable to verify most cancer related information from online sources.
Nevertheless, 59% of the respondents expressed difficulties in obtaining health information, with 57% finding it difficult to understand health information from online sources, newspaper, magazine, or clinic pamphlets. In addition, 51% reported difficulty in understanding information provided by doctors, nurses, or other medical professionals. Meanwhile, 8 in 10 respondents said they were unable to verify cancer related information from online sources.
In terms of trust, 58% of respondents believed cancer related information is more trustworthy if it receives more likes/shares. Additionally, 68% considered peer patients’ experiences more reliable than doctors. Notably, 51% believed that it is worth trying methods endorsed by peer patients, even without consulting their doctor.
Nearly 4 in 10 people felt unwell after taking advice from friends, relatives or online sources; 23% experience regret.
The survey also revealed the impact of insufficient health literacy on cancer patients. 48% of the respondents had undergone unnecessary food restrictions, such as reducing intake of beef, chicken or sugar, based on advice from family, other patients and online resources.37% of the patients felt unwell, with 23% expressing regret about taking the advices. When differences arose between the information they received and that received by the patient or caregivers, 44% of the respondents reported conflicts.
Look for reliable cancer related information and ensure proper verification.
Dr Lam Ka On, Chairman of the Cancer Education Subcommittee of the HKACS said, ‘Facing an unexpected cancer diagnosis, patients and their caregivers are pressured to navigate a massive change in their lives. Medical information is not easy to understand, and it becomes even more difficult under pressure. However, given that it is cancer, it is crucial for patients and caregivers to obtain accurate information and take appropriate actions. Each step can impact the patient’s health condition, so one should be more alert. If any of your friends or relatives are facing cancer, please remember to verify any cancer related information before sharing it with them to avoid adversely affecting their condition, even you have good intentions.’
Dr Lam also pointed out that one should be more cautious with the information shared from online sources or consult medical professionals when necessary. Verification of cancer related information should be considered from various aspects, including information source, whether it is comprehensive, publication time or last updated time, and its relevance. Even it is not about cancer, members of public should improve their health literacy to maintain their health. In case one is diagnosed with cancer, as time for each oncologist’s visit is limited, ulitising other resources, such as organisations recognised by the government or the Hospital Authority, becomes essential – consultations can focus on clinical conditions and treatment, enabling patients to receive the most appropriate treatments and care with limited time resources.
Treatment plans differ from one another, rumours shouldn’t be trusted.
Many patients may think it is worth trying the methods used by peer patients. However, the medical and physical condition of each patient varies. Even if it is the same type and stage of cancer, a treatment that works well for one patient does not necessarily suit everyone. Doctors would propose the most appropriate treatment plan according to each patient’s unique condition.
Regarding the rumour about killing cancer cells by food or sugar restriction, Dr Lam pointed out that unnecessary food restrictions can cause malnutrition, making it even worse for cancer treatment. In addition, there is no mechanism to control cancer cells’ growth with sugar, so sugar restriction is not practical. On the other hand, those claiming ‘successful cases’ may lack support from scientific research and clinical data. There are no better ways than maintaining a balanced diet, engaging in suitable amount of exercise and preserving physical strength to support overall body functioning.
Enhance cancer health literacy through reliable channels.
Patients and caregivers should improve their cancer health literacy, as suggested by Dr. Lam:
- Learn how to search for health information.
- Identify trustworthy information.
- Seek and choose a suitable treatment plan.
- Proactively engage in treatments.
Detailed suggestions as follow:
