A Study of the Quality of Life Among Adolescent and Young Adult Cancer Survivors
Every year, around 8,000 Canadian adolescent and young adults (AYA) are diagnosed with cancer , and about 5% of all cancer diagnoses in the United States are in this population. The survival rates are high in this population, but this diagnosis has substantial long-term effects as these patients often live over 50 years after initial diagnosis and treatment.
Why is Quality of Life (QoL) important for AYA cancer survivors?
Adolescent young adults who have cancer in their formative years are often negatively impacted in terms of their overall well-being. Therefore, attention is being directed at the psychological and social needs of this population. QoL feedback is essential during and after treatment because it helps assess the subjective well-being of a person. It also identifies the most vulnerable groups and subgroups of people that need attention and help. Commonly reported problems in AYA are self-esteem issues, body image issues, lack of emotional well-being, and anxiety about the effects of cancer treatments. Quality of life (QoL) issues such as these are especially important in the AYA population as providers strive to keep the overall functioning of these patients at the highest possible level. Current research has shown inconsistencies about long-term QoL outcomes, and has been limited to a 2-year post treatment timeframe.
Purpose of The Study
In the recent past, the needs of AYA cancer survivors beyond active cancer treatment have been ignored. Clinical services have always been centered around patients in current treatment. Much less attention has been focused on the needs of the survivors. This study aims to elucidate more clearly the post treatment needs of this population.
In response to these reported problems in AYA cancer survivors data, researchers posed the following questions:
- Do adolescents and young adult cancer survivors experience poorer quality of life (QoL) compared to the general population?
- Can the time since treatment, sex, or psychological factors affect the quality of life among AYA cancer survivors?
The study sought out to find the differences in QoL among AYA cancer survivors compared with the rest of the Canadian population. The study also explored the factors that cause poor QoL in AYA cancer survivors.
The objectives were:
- To determine if there is a significant difference in QoL outcomes in AYA cancer survivors in comparison to the general population.
- To determine predictors of QoL in AYA survivors.
Methods
To answer the study questions, QoL in AYA was measured as a primary outcome using physical and mental component scores from a 12 item short-form or 36 item short-form health status survey. The short form questionnaires have been extensively used in cancer patient survivors is considered valid. Data from the Young Adults With Cancer in Their Prime survey was compared to the Canadian Community Health Survey of the general population.
Using data from the Young Adults With Cancer in Their Prime (YACPRIME) study, a comprehensive picture of the needs of AYA cancer survivors in Canada was collected.
Participants were adolescents and young adult cancer patients between 15 and 39 years of age. The participants were all 2 years or more post cancer therapy completion.
The data gathered was assessed and compared to the group derived from the Canadian Community Health Survey (CCHS) which is the national, cross-sectional survey of health data for the Canadian population.
The survey was done online through patient partners from Young Adult Cancer Canada (YACC). They helped recruit participants using email, media, online advertisements, and social media posts. The study started in June of 2017 and finished in March of 2018.
The following secondary outcomes were measured and reported as follows:
- Sleep – Measured and reported using the Pittsburgh Sleep Quality Index, which is a 19-question survey that has been previously used and considered valid.
- Body Image – Measured and reported using the Body Image Scale, which is a 26-question survey used to assess affective, behavioral, and cognitive body image symptoms. This scale has been previously used and validated.
- Fear of Cancer Recurrence (FCR) – Measured and reported using the Fear of Cancer Recurrence Inventory-Short Form, which is a 9-question that ranks fear severity and has been extensively used in adult and adolescent cancer patients.
- Posttraumatic Growth – Measured and reported using the Posttraumatic Growth Inventory, which is a 21-item tool measuring positive growth after trauma.
- Social Support – Measured and reported using the Medical Outcomes Study Social Support Survey, which is a 19-item survey used to measure measure emotional and informational support, tangible support, affectionate support, and positive social interactions. The reliability and validity of this survey have been well established.
- Demographic Data – Patient data such as sex, age, race/ethnicity, total household income, relationship status, employment/student status and clinical data such as diagnosis, age at diagnosis, cancer stage, treatment, time since treatment elapsed were obtained and reported from the YACPRIME survey.
Analysis and Discussion of Results
Using comparative survey data, researchers sought to find whether the QoL of AYA cancer survivors differs greatly from that of their peer population. They measured specific factors that relate to QoL. The findings were as follows:
- AYA cancer survivors had significantly lower physical health, controlling for sex and age, compared with the peer sample (mean ± SD score, 46.23 ± 8.42 vs 51.56 ± 8.49, respectively; F[1,818] = 52.80; P = .00).
- AYA survivors reported significantly lower mental health compared to their peer group (39.60 ± 11.64 vs 52.93± 8.54, respectively; F[1,818] = 83.54; P = .00), controlling for sex and age.
- Compared with individuals earning >$80,000 annually, those AYA survivors earning <$40,000 annually were more likely to report poor physical health (AOR, 8.32; 95% CI, 2.85-24.30).
- AYA survivors with poorer sleep quality were more likely to report poor physical health (AOR, 1.19; 95% CI, 1.06-1.33).
- AYA survivors with poorer body image were more likely to report poor physical health (AOR, 1.08; 95% CI, 1.02-1.14).
- AYA survivors with higher levels of social support (AOR, 1.02; 95% CI, 1.00-1.05) were more likely to report poor physical health.
- Sex, current age, age at diagnosis, relationship status, employment status, time since completing treatment, having received surgery or chemotherapy, FCR, and posttraumatic growth were not significantly associated with physical health.
- AYA survivors with poor sleep quality were more likely to report poor mental health (AOR, 1.22; 95% CI, 1.08-1.38).
- AYA survivors with poor body image were more likely to report poor mental health (AOR, 1.06; 95% CI, 1.01-1.12).
- AYA survivors with high FCR were more likely (AOR, 1.13; 95% CI, 1.06-1.21) to report poor mental health.
- AYA survivors not in a relationship (single) reported better mental health (AOR, 0.29; 95% CI, 0.11-0.81).
- AYA survivors with sleep difficulties were 1.2 times more likely to have poor physical and mental QoL.
- Sex, current age, income, age at diagnosis, employment status, time since completing treatment, having received surgery or chemotherapy, social support, and posttraumatic growth were not significantly associated with mental health.
As seen in the results above, AYA cancer survivors demonstrated poorer physical and mental health in relation to the comparison sample. Even after 6 years had passed since treatment, almost one-half reported poor mental health, and 32% reported poor physical health. AYA cancer survivors reported a sense of isolation both from their healthy peers as well as their fellow cancer patients. The impact of cancer on QoL for AYA is continued long after treatment. This highlights the need for specialized survivor care in addition to follow-up cancer treatment care.
Limitations of the Study
The researchers found several limitations to the study. First, some disagreements existed when comparing SF-12 and the SF-36 between samples. Although there are a lot of studies documenting consistency between them.
The researchers chose not to include a cancer-specific QoL because this would have limited their ability to compare scores with the noncancer comparison sample.
Participant samples were partially collected via collaboration with the YACC organization. Although 36% have reported that they were not involved with YACC, it’s possible that survivors engaged with YACC were experiencing greater QoL difficulties than the general population of AYA survivors.
The sex distribution was significantly biased in favor of females. There are also a low percentage of melanoma survivors and a high rate of gastrointestinal cancer survivors. The researchers believe these could have affected the QoL scores.
Final Thoughts
Overall, the study represents a large sample of AYA cancer survivors and shows the difference in QoL in AYA Canadians of the same peer group. Ongoing research is needed to determine and understand how QoL among AYA cancer survivors is affected, and what support services can be offered to these patients.
Helping AYA cancer survivors improve their QoL is important and requires attention. These results suggest the need to develop more extensive psychosocial interventional programs for survivors with a focus on sleep, body image distress, and social support.
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