Imagine: you want to send an email, but you catch yourself staring at a blank message, unable to remember what you wanted to say. Now imagine trying to manage your demanding job, for which you handled countless emails with ease before your cancer diagnosis. Just as you thought you had made a full recovery, your mind betrays you. You can’t keep going like this.
Roughly 1 in 8 cancer survivors experiences difficulties with the understanding, processing, or remembering of information. These cognitive issues can be a significant hindrance in daily life. Concentration slips away, conversations don’t register, and you forget more than what’s manageable. At home and at work, cognitive abilities are essential to function, as they’re required to solve problems and make decisions.
“We’ve noticed that people with cognitive issues often do return to work, but end up struggling to perform tasks as they used to,” neuropsychologist Sanne Schagen from the Netherlands Cancer Institute explains. “That’s why we’ve developed an accessible online program to help them. We know there’s a strong demand for this type of support, and it’s great to finally be able to offer it.”
Of course Sanne and her colleagues thoroughly tested whether the participants could truly benefit from the program. They published their findings in the scientific journal JNCI Cancer Spectrum earlier this year.
The study involved 279 participants who experienced cognitive issues after cancer treatment. One-third of the participants followed a basic program, another third followed a more advanced program, and the final third were put on a waiting list. Both programs guided participants through online modules covering topics like cognitive challenges after a cancer diagnosis and its treatment, fatigue, trust in your own brain, and workplace communication about these struggles. Participants in the advanced program also learned to apply cognitive strategies and received online support from a therapist, which was not included in the basic program.
All study participants showed improvement, with the therapist-supported group showing better results at achieving goals. “Each participant set three personal goals related to work and defined very concrete outcome measures with their therapist,” PhD student Kete Klaver from the NKI explains. “One such goal could be to resume other activities outside work, such as exercising, meeting friends, or cooking a meal. Using modules from the online program like balancing fatigue or taking control of planning, people can learn to manage their energy and schedules more effectively.”
‘I found the module very helpful and still use it,’ one participant shared. ‘I review it regularly to remember everything I’ve learned. Some of the strategies I had already been using, but practicing and reading more about them made everything clearer.’ Another commented: ‘I’ve learned that I can work and live very well, even if my memory isn’t functioning perfectly. There are plenty of strategies I can use to deal with that, both at home and at work.’
Surprisingly, even the control group showed slight improvements. How was that possible? “This group did receive one intake session, a neuropsychological assessment, and they set goals for themselves,” Sanne explains. “Apparently this process alone can already help people, even without further interventions. This aligns with what we see in clinical practice: understanding your cognitive strengths and weaknesses and identifying key challenges provides a sense of control over the situation.”
The program is now available online (in Dutch). People can gain access to it through their health care providers, such as occupational therapists or rehabilitation specialist. “We’re working hard to provide a self-help version of the program that won’t require a referral from a health care provider,” Sanne says.
The online program developed by researchers at the Netherlands Cancer Institute is based on an existing tool for people with brain injuries, which was developed by UMC Utrecht and Maastricht UMC (offline). “When we reached out to them, we found out that they were also looking to create an online version. Together with them, as well as GGZ inGeest and GGZ NHN, we ended up developing three versions: one for cancer survivors, one for people with brain injuries, and one for people with psychiatric conditions.”
This research was financially made possible by KWF Dutch Cancer Society