The information found in the recent Young Adult Cancer Canada (YACC) report shows that the young adult population continues to be cancer’s “forgotten generation,” especially in Canada.
This lack of awareness and evidence-based psychosocial information led YACC to partner with Dr. Sheila Garland of Memorial University and a research team to develop the YAC Prime Study. The study is a national cross-sectional survey of 622 young adults (YAs) diagnosed with cancer who were more than two years out from completion of treatment. The largest of its kind to date, it was also the first to examine the physical, social, financial, and emotional challenges faced by young adults diagnosed with cancer while comparing them to their non-cancer peers.
Quality of life
Participants rated quality of life subjectively in relation to their overall feelings of physical, psychological, and social elements of life.
YAC Prime observed that YA survivors of cancer showed significantly worse physical and mental health ratings compared to their non-cancer peers. The factors associated with poorer quality of life were sleep, fear of cancer recurrence, body image distress, and need for social support. In the sample, 49.7 percent of participants who were more than six years from the completion of cancer treatment reported poor mental health, and 31.8 percent reported poor physical health.
These findings emphasize the fact that it takes longer to recover from cancer than to be treated for it. It also highlights the urgent need for appropriate and specialized survivorship care and psychosocial support long after the end of treatment. Better interventions around sleep, fear of cancer recurrence, body image, and social support can have a real impact on the overall quality of life of young adults.
Psychological distress describes the collective experience of depression, anxiety, and related symptoms. Results showed that 46.7 percent of participants experienced moderate to severe distress with 26.7 percent reporting severe distress.
The relationships between distress and social support were also explored in rural and urban YAs and found those living in rural settings experience more distress than those living in urban settings.
More fluid and constant collaboration between our healthcare system and community-based organizations could be quite beneficial in helping reduce the distress in the population. The mental health of YAs may continue to be impacted long after they are discharged from their cancer centre or eligible for cancer centre psychosocial supports, so referrals for ongoing support may be essential!
Fear of recurrence
YAs with cancer show persistent distress and anxiety that their cancer will recur and uncertainty about future health. In the study, a whopping 59.2 percent of participants reported experiencing clinically significant fear of cancer recurrence (FCR).One in six participants reported spending a few or several hours a day preoccupied with thinking about the possibility of recurrence. Imagine spending time everyday scared of a life-threatening illness coming back! For some, it is debilitating.
Some very effective programs exist to mitigate FCR. Those programs have been built and mainly offered to older adults, but with some adjustments to make the program relevant for YAs who suffer from isolation and are most times the youngest in every room in the hospital. Having support services where they can be surrounded by their peers and where FCR is addressed while taking their stage of life and issues into account can make a real difference.
The serious impact sleep can have on the health of young adults diagnosed with cancer is overlooked in research and not addressed enough in psychosocial care. Lack of sleep can impact mood, physical health, relationships, and cognition.
The YAC Prime Study found 86 percent of YAs diagnosed with cancer reported worse sleep quality. Also, immediately post-cancer diagnosis, 52 percent of YAs are likely to have difficulty falling or staying asleep. Sleep medication use was reported by 44.5 percent of the sample with 20.6 percent reporting using medications three or more times per week.
Some very effective interventions exist to help with sleep issues, but until YAs are informed of the impact sleep disturbances can have on their health and quality of life, and until programs and support are made available to them, things won’t change.
Body image distress
When diagnosed with cancer, the body goes through many changes from hair loss, weight fluctuations, scars, and skin conditions that affect how the body is perceived and how one feels in their skin. Yet, body image concerns are often overlooked and rarely discussed with YAs with cancer.
The study showed that higher body image concerns were related to less time since diagnosis, lower post-traumatic growth and social support, greater distress, and a higher number of treatments received. Body image concerns were also higher for those currently on treatment.
YAs would benefit from discussions with their care teams on the possible impact cancer treatment can have on their bodies. The intervention should also plan for some long-term resources and tools to help as young adults live with, through, and beyond cancer.
The YAC Prime study looked into the prevalence of fertility preservation knowledge, discussions and engagement in young adults with cancer, and specifically explored the relationship of these variables with later post-traumatic growth (PTG).
It was found that 81 percent reported awareness of risk (how cancer treatment can affect fertility), 52 percent discussed fertility preservation, and 13 percent pursued fertility preservation.
PTG was higher for those with knowledge of fertility risk, and those who did not go forward with fertility preservation because of their own choice or their doctor’s recommendation not to delay treatment reported significantly higher PTG.
Providing young adults with clear and relevant information on the potential risk of cancer treatment on fertility is a difficult conversation to have, but an important one that can empower them to make the best decision for themselves and better cope with the outcomes.
YAs with cancer often find themselves in a precarious situation; they are too young to have had a chance to save much money, to have made enough contributions to pension programs, or to have had a job for long enough to have financial security or health coverage. Many are still in school or looking for their first job, starting a new family, or moving into their own homes and fully embracing their independence. This makes them vulnerable, and cancer often means having to change or reorganize their plans. The study found 35.4 percent of the sample quit work or school completely, 70 percent missed at least six months of work, and 50 percent missed school or work for 1-3+ years.
It is also a misconception to think that healthcare has no costs for Canadian patients; from regular travel to the hospital, parking, and non-covered medication, it can be very costly to go through cancer.
The results show a deep and lasting impact on YAs finances; they have extended periods of no or lower income, increased medical expenses, more bad debt, and fewer assets than non-cancer peers.
Income also had a strong relation to physical quality of life. It was found that those earning less than $40,000 annually were more than eight times more likely to report poor physical quality of life than those earning more than $80,000 annually. Knowing that the Canadian median annual income level in 2018 was $61,000, it suggests that these individuals were living in poverty and probably struggling to maintain a basic standard of living. Addressing this issue is crucial as we think of recovery in a more holistic way.
The hope is that these findings will influence government authorities, employers, HR departments, school administrations, and banks in their approach to dealing with YAs affected by cancer.
The power of connection
Isolation is one of the main issues faced by YAs with cancer. In 2006, Dr. Brad Zebrack found that young adults want the support of other young adults with cancer more than they want support from any other group. Parents and friends are still very important, but they ultimately want and need to connect with their cancer peers. The study found that those who feel connected to the young adult cancer community have:
• Lower levels of distress
• Better overall mental health
• Less body image distress
A positive effect on emotions, cognitions, and behaviours that are beneficial to health
It was also found that a sense of belonging and connection to a community of peers can have a positive effect on emotions, cognitions, and behaviours that are beneficial to health. Those who do not feel connected to the YA community use less adaptive coping methods (i.e. positive reframing) and more maladaptive coping methods (i.e. behavioural disengagement, substance use, avoidance, etc.).
The young adult cancer population continues to be a “forgotten generation” in oncology. The YAC Prime Study has helped shed some light on areas that require attention and the data highlights the disruptive developmental impact of a cancer diagnosis during young adulthood and launched the need for a longitudinal study which is underway.
Source: Young Adult Cancer Canada