The quality of life (QoL) of cancer patients has been harmed by erroneous advice provided by friends, non-medical personnel, the internet and even by leading cancer associations, according to a newly published study by a Tel Aviv University Medical Center-Tel Aviv University (TAU) team.
Which advice is bad advice?
The survey of 208 patients under active treatment in the hospital’s oncology department showed that at least one social-environmental avoidance or dietary limitation — including abstaining from social contact and avoiding pets, public domains and traveling and maintaining dietary constraints — adopted by the patients was based on misleading and incorrect information.
The original research was published in the European Society for Medical Oncology’s ESMO Open journal under the title: “Real-life daily activity: the impact of misbeliefs on quality of life among cancer patients.”
The study itself
Social and environmental restrictions included avoiding contact with their children and grandchildren (67 patients, or 32%), friends (47, 23%), child daycares, nurseries and schools (79, 38%), indoor public places such as malls (67, 32%), outdoor public spaces (55, 26%), contact with pets (69, 33%), sun exposure (136, 65%), the beach (112, 54%), hair dyeing (78, 38%), domestic tourism (79, 38%) and international travel (120, 58%),
One hundred and twenty (57.7%) patients reported at least one dietary measure and 37 (17.8%) upheld more than half of the dietary limitations. These included avoiding raw fruits, vegetables, meat and fish; nuts; tap water; and abstaining from restaurants and take-out food.
The authors, led by Prof. Ido Wolf — director of Sourasky’s oncology division — wrote that “the survey we conducted is, to our knowledge, the first to reflect compromised daily routines of actively treated cancer patients. Our findings indicate that cancer patients practice behavioral measures, which have a deleterious impact on real-life QoL.
"Our results call for the urgent development of tools allowing assessment of patients’ real-life activity, beyond health-related QoL, and also for the implementation of education programs and practical instructions enabling patients to sustain normal life even during times of active cancer treatment… We propose accounting for a more comprehensive assessment of QoL, and patient health care education dispelling misbeliefs,” he said.
Surprisingly, the researchers found that “even leading cancer associations, including the American Cancer Society, Cancer Research UK and the Israeli Cancer Association (ICA) continue to endorse various restrictions on daily activity, often without sound scientific basis."
"For example," they said, "many of the leading cancer associations consider actively treated cancer patients, often not justifiably, to be at increased risk of infection, although various studies looking at the role of environmental, social and dietary restrictions failed to show any benefit even in very-high-risk patients.”
The paper does not provide any citations of misleading advice provided by the Israel Cancer Association.
Asked to comment, ICA chairman Prof. Avraham Kuten told The Jerusalem Post that there may have been minor instances of misinformation on the site in the past and that they will be reviewed and corrected if necessary.
Who participated in the study?
The questionnaire was distributed and assessed between October and December 2019 (before the coronavirus pandemic). The median age of those participating in the anonymous survey was 65 years (range 53-73 years); 117 were women and 91 were men. The majority of patients were born in Israel. Nearly 60% had a higher education including an academic degree. The most common tumor types included gastrointestinal malignancies, breast cancer and lung cancer. Most patients reported compromised daily activities, affecting their QoL in its wider sense – conducting a full and meaningful life.
“While side effects and health-related quality of life (QoL) are routinely assessed in clinical trials, commonly used tools do not measure patients’ ability to maintain normal daily activities,” the authors wrote. “QoL can be severely affected directly by the disease, the treatment side-effects and by personal and societal misconceptions promoting avoidance from activities perceived as dangerous for cancer patients.”
The major sources guiding restrictions came from the advice of non-medical personnel (55.7%), the Internet (7.2%) and personal choice by the patients themselves (24%).
“Our study indicates that a large number of actively treated patients with solid tumors adhere to major social, environmental and dietary restrictions,” they stated. “These limitations were adopted across patients with different tumor types, treatments and clinical variables and are likely to severely affect the ability of cancer patients to pursue normal daily life.”
Why did many cancer patients needlessly restrict themselves?
The authors suggested that “behavioral restrictions may reflect patients’ need for control. Even if patients are aware that their restrictions are not useful, they might adopt restrictions as a means to gain control in a situation in which they have limited control over their disease and treatment—possibly explaining why 24% of restrictions came from personal choices, even if these personal choices probably have other sources of information.”
In addition, they wrote: “There is most likely a link between applied restrictions and fear. Anxious people might maintain more restrictions, even in the presence of clear evidence that their behavior does not help in any way.
"The elderly population also maintained stricter limitations. It is also possible that some patients report some restrictions that actually serve as an excuse to justify their behavior — for example, patients reporting abstaining from travel or visiting friends and family, whereas they may actually suffer from symptoms of the treatment and disease," they wrote. Danger can be a valid excuse, whereas fatigue, lack of desire and will may be more delicate to share with friends and family.”