Once diagnosed, patients’ lives get turned upside down, never to be the same again. Treatment generally starts almost immediately or within a few days, leaving patients little time to mentally digest the diagnosis and what it means for them or to make arrangements for their day-to-day responsibilities. This is especially difficult for people with children or those who are still working. Treatment regimens vary depending on cancer subtype and other factors but can include chemotherapy, radiotherapy, and major surgery. All of these are physically and psychologically demanding, often associated with severe side effects, and patients face lengthy recovery times.

While many patients achieve remission, this phase brings its own challenges. For most people, the disease as well as the treatment have a long-term impact on their mental and physical health. Often, second-line treatment is needed. The AML patients IQVIA spoke to all needed a stem cell transplant (SCT, commonly the second line treatment in AML) and while SCT has a high success rate in terms of achieving remission, it also comes with severe, often permanent side effects. Graft-versus-host disease (GvHd) is a frequent issue, resulting in pain, inflammation and fatigue and sometimes leading to permanent disability.

In CRC, patients often have to deal with a temporary or permanent stoma and in case of chemotherapy, long-term side effects which can have a major impact on day-to-day activities. In both indications, many patients are not able to go back to work at all or have to reframe their professional aspirations and switch to a less demanding role while still having to earn a living. Other plans and goals such as family planning or travel may also have to be put on hold or dispensed with entirely. This is also a time when people must understand and adjust to their new normal while processing everything that has happened to them since diagnosis and having to face the possibility of the cancer recurring. At the same time, there is comparatively little support for patients and their loved ones during this phase.

Burden of care often falls on family members

As in many other diseases, family members are often both caregivers and a source of mental and emotional support for patients. Interview participants consistently highlighted how much they relied on support from family members as well as friends. At the same time, family members are themselves having to deal with their loved one having a at a minimum life-changing, and possibly deadly disease. Often, the relationship changes irrevocably due to this new dynamic.

The burden this situation places on family members, especially those acting as caregivers is often overlooked and there is little support available to them. Such support could take the form of psychological care by professionals or of peer groups, but also practical assistance like easy-to-access information and help with daily tasks.

Unmet medical need drives interest in clinical trials and RWE studies

Most respondents would be open to participating in clinical trials as well as RWE studies, both in the hope of getting early access to more efficient therapies and out of a desire to advance research and thereby help others. This openness to participating in medical research is in sharp contrast to other indications, reflecting the high unmet medical need and the severe impact of AML and CRC on people’s quality of life and life expectancy. Ultimately, patients feel they have not much to lose.

By comparison, in obesity patients are far less certain that the risk/benefit ratio of participating in clinical trials is in their favour. Although they report considerable impact of their condition on their day-to-day quality of life, people struggling with obesity are reluctant to consider going on medication or participating in clinical trials for fear that this will eventually leave them worse off.⁴

Although respondents are interested in clinical trials and RWE studies, there are also concerns about the demands study participation would place on them in terms of time, logistics and finances, e.g. for travel expenses or income lost from missing work. These concerns as well as the physical and mental limitations of patients dealing with the long-term impact of AML and CRC must be taken into consideration when designing clinical trials to successfully tap into the potentially high motivation for trial participation.

Education, awareness, and support for patients and caregivers is needed to mitigate the impact of AML and CRC

Cancer is a disease which permanently alters the lives of those who are directly affected as well as their loved ones. In addition to clinical unmet need, patients and caregivers also encounter challenges in adjusting to life with the disease for which supportive measures are needed, including but not limited to:

• Education and awareness programmes on the early symptoms of AML and CRC for primary care physicians and the general public: especially young patients experience misdiagnosis or delayed diagnosis which has a direct impact on survival prognosis. To speed up diagnosis, education and awareness campaigns for primary care physicians, who are often the first point of contact, and for the general public are needed.
• Support programmes for caregivers to help ease the practical and psychological burden while they support their family member.
• Education and awareness on clinical trials and RWE studies: while interest in studies is high, many patients have little understanding about the practical side of trial participation. Awareness campaigns for HCPs and patients can dispel concerns and encourage patients to enrol in trials. Patients and patient organisations should also be involved in trial design to ensure patient needs are met.