Diagnosis
Exploring Cancer Worry in Adolescent and Young Adult Survivors of Childhood Cancers
http://online.liebertpub.com/doi/full/10.1089/jayao.2015.0029
Purpose: Adolescent and young adult (AYA) survivors of cancers in childhood experience cancer worry, defined as concerns about cancer-related issues such as relapse and late effects of treatment. Cancer worry is an important determinant of successful transition to long-term follow-up care. The primary aim of this study was to identify patient-, cancer-, and treatment-related factors associated with cancer worry in AYA survivors. A secondary aim was to explore and understand inappropriate cancer worry (e.g., worry of developing a late effect when not at risk) in this population.
Methods: Two hundred and fifty AYA survivors, aged 15–26 years, completed a 6-item Cancer Worry Scale. Selection of factors potentially associated with cancer worry was guided by literature and expert opinion for inclusion in univariable and multivariable regression analyses.
Results: Female survivors reported significantly more cancer worry than males did (β = −9.4; 95% CI −14.4 to −4.5; p < 0.001). Survivors treated with the most intensive therapies reported more cancer worry compared with those who received the least intensive therapies (β = −18.5; 95% CI −31.2 to −5.9; p = 0.004). Thirty-one percent of participants had inappropriate worry regarding infertility and/or secondary malignancy.
Conclusions: In AYA survivors, female sex and higher treatment intensity were associated with increased cancer worry. Inappropriate worry was prevalent among survivors and may contribute to unnecessary distress. These findings can help identify survivors who are more likely to worry and support the development of appropriate services to reduce the effect of cancer worry on survivor well-being.
As a result of recent advancements in cancer treatments, it is estimated that >80% of children and adolescents diagnosed with cancer will survive their initial disease.1,2 However, the coordinated use of surgery, radiation, and chemotherapy places patients at risk for a number of physical and psychosocial late effects.3–5 Survivors are at risk for chronic health complications, including organ dysfunction, impaired growth, and neurocognitive defects, which may manifest from months to even years after treatment.4,5 The lived experience of cancer in childhood can further affect their psychosocial well-being.6–8 Cancer-related worries have been self-reported by childhood cancer survivors years beyond completion of treatment.4,9 Specific worries range on a spectrum, and include fears and anxiety about relapse, infertility, and being diagnosed with a new cancer.9,10
Lifelong coordinated long-term follow-up (LTFU) care plays a crucial role in monitoring the health and psychosocial adjustment of childhood cancer survivors.11 In Canada, many survivors attend specialized LTFU clinics and receive medical care that follows the Children's Oncology Group's survivorship guidelines (www.survivorshipguidelines.org/). In a typical LTFU visit, patients may be assessed for disease recurrence, be educated about health behaviors, and receive late-effects counseling that is modified based on the individual's prior exposures. However, it is known that many survivors do not successfully transition to LTFU, or drop out of follow-up overtime.12,13 The authors' team previously identified psychological factors that can impact LTFU participation.14,15 Some survivors reported that having cancer worry motivated them to attend LTFU, while conversely others indicated that such worry made them reluctant to seek care.14
Cancer worry is an especially important topic in adolescent and young adult (AYA) survivors. In Canada, AYA is defined as those between 15 and 29 years of age.16 The literature has described that worry in this population may affect their psychosocial adjustment process, alter self-image, and influence lifestyle decisions.9,10,17 For instance, some AYA survivors who reported worry engaged in risky behaviors of excessive alcohol consumption, while others adopted more healthy behaviors such as increased physical activity.18,19
Given that cancer worry has the potential to affect transition to LTFU and quality of life (QOL) in AYA survivors, it is important to identify those who are most likely to experience worry. Presently, little is known about which factors are predictive of cancer worry. Previous studies have found that females tend to exhibit more cancer-specific worries than males do, particularly regarding fertility.4,9,17 Degree of worry may also differ based on type of cancer; for instance, acute lymphoblastic leukemia (ALL) survivors were found to worry less about relapse compared with other survivors.10 Evidence is less clear about the relationships between cancer worry and survivors' current age or years off-treatment.4,17 Moreover, there is a lack of population-specific and validated scales to measure cancer worry. To address this gap, this study developed a 6-item scale to measure AYA survivors' thoughts and feelings associated with a specific set of common cancer-related concerns.20 The purpose was to create a tool to be used in both research and clinical practice in order to identify and address cancer worry early on in transition.
Using the Cancer Worry Scale (CWS), the primary aim of this study was to identify patient-, cancer-, and treatment-related factors associated with cancer worry in AYA survivors of cancer in childhood. Cancer worry is defined as concerns about cancer-related issues, such as relapse and late effects of treatment. A secondary aim was to assess whether there is inappropriate worry about developing two common adverse outcomes of cancer treatment that were specifically inquired about in the CWS: second malignancy and infertility. Worry is defined as “inappropriate” when survivors expressed worry about either of the two late effects, without being at risk based on their cancer history. Increasing understanding about cancer worry will inform and improve supportive care services to meet the healthcare needs of AYA survivors.
http://online.liebertpub.com/doi/full/10.1089/jayao.2015.0029
Purpose: Adolescent and young adult (AYA) survivors of cancers in childhood experience cancer worry, defined as concerns about cancer-related issues such as relapse and late effects of treatment. Cancer worry is an important determinant of successful transition to long-term follow-up care. The primary aim of this study was to identify patient-, cancer-, and treatment-related factors associated with cancer worry in AYA survivors. A secondary aim was to explore and understand inappropriate cancer worry (e.g., worry of developing a late effect when not at risk) in this population.
Methods: Two hundred and fifty AYA survivors, aged 15–26 years, completed a 6-item Cancer Worry Scale. Selection of factors potentially associated with cancer worry was guided by literature and expert opinion for inclusion in univariable and multivariable regression analyses.
Results: Female survivors reported significantly more cancer worry than males did (β = −9.4; 95% CI −14.4 to −4.5; p < 0.001). Survivors treated with the most intensive therapies reported more cancer worry compared with those who received the least intensive therapies (β = −18.5; 95% CI −31.2 to −5.9; p = 0.004). Thirty-one percent of participants had inappropriate worry regarding infertility and/or secondary malignancy.
Conclusions: In AYA survivors, female sex and higher treatment intensity were associated with increased cancer worry. Inappropriate worry was prevalent among survivors and may contribute to unnecessary distress. These findings can help identify survivors who are more likely to worry and support the development of appropriate services to reduce the effect of cancer worry on survivor well-being.
As a result of recent advancements in cancer treatments, it is estimated that >80% of children and adolescents diagnosed with cancer will survive their initial disease.1,2 However, the coordinated use of surgery, radiation, and chemotherapy places patients at risk for a number of physical and psychosocial late effects.3–5 Survivors are at risk for chronic health complications, including organ dysfunction, impaired growth, and neurocognitive defects, which may manifest from months to even years after treatment.4,5 The lived experience of cancer in childhood can further affect their psychosocial well-being.6–8 Cancer-related worries have been self-reported by childhood cancer survivors years beyond completion of treatment.4,9 Specific worries range on a spectrum, and include fears and anxiety about relapse, infertility, and being diagnosed with a new cancer.9,10
Lifelong coordinated long-term follow-up (LTFU) care plays a crucial role in monitoring the health and psychosocial adjustment of childhood cancer survivors.11 In Canada, many survivors attend specialized LTFU clinics and receive medical care that follows the Children's Oncology Group's survivorship guidelines (www.survivorshipguidelines.org/). In a typical LTFU visit, patients may be assessed for disease recurrence, be educated about health behaviors, and receive late-effects counseling that is modified based on the individual's prior exposures. However, it is known that many survivors do not successfully transition to LTFU, or drop out of follow-up overtime.12,13 The authors' team previously identified psychological factors that can impact LTFU participation.14,15 Some survivors reported that having cancer worry motivated them to attend LTFU, while conversely others indicated that such worry made them reluctant to seek care.14
Cancer worry is an especially important topic in adolescent and young adult (AYA) survivors. In Canada, AYA is defined as those between 15 and 29 years of age.16 The literature has described that worry in this population may affect their psychosocial adjustment process, alter self-image, and influence lifestyle decisions.9,10,17 For instance, some AYA survivors who reported worry engaged in risky behaviors of excessive alcohol consumption, while others adopted more healthy behaviors such as increased physical activity.18,19
Given that cancer worry has the potential to affect transition to LTFU and quality of life (QOL) in AYA survivors, it is important to identify those who are most likely to experience worry. Presently, little is known about which factors are predictive of cancer worry. Previous studies have found that females tend to exhibit more cancer-specific worries than males do, particularly regarding fertility.4,9,17 Degree of worry may also differ based on type of cancer; for instance, acute lymphoblastic leukemia (ALL) survivors were found to worry less about relapse compared with other survivors.10 Evidence is less clear about the relationships between cancer worry and survivors' current age or years off-treatment.4,17 Moreover, there is a lack of population-specific and validated scales to measure cancer worry. To address this gap, this study developed a 6-item scale to measure AYA survivors' thoughts and feelings associated with a specific set of common cancer-related concerns.20 The purpose was to create a tool to be used in both research and clinical practice in order to identify and address cancer worry early on in transition.
Using the Cancer Worry Scale (CWS), the primary aim of this study was to identify patient-, cancer-, and treatment-related factors associated with cancer worry in AYA survivors of cancer in childhood. Cancer worry is defined as concerns about cancer-related issues, such as relapse and late effects of treatment. A secondary aim was to assess whether there is inappropriate worry about developing two common adverse outcomes of cancer treatment that were specifically inquired about in the CWS: second malignancy and infertility. Worry is defined as “inappropriate” when survivors expressed worry about either of the two late effects, without being at risk based on their cancer history. Increasing understanding about cancer worry will inform and improve supportive care services to meet the healthcare needs of AYA survivors.