Journal of cancer survivorship : research and practice, Jan 4, 2015
With cancer survivors now numbering over 13 million in the United States, and expected to continu... more With cancer survivors now numbering over 13 million in the United States, and expected to continue to increase, it is important to consider the needs of this growing population. In the literature, one of the most common complaints by cancer survivors is perceived cognitive dysfunction. Since the preponderance of the research has focused on breast cancer survivors, the purpose of the present study was to explore the prevalence and correlates of perceived cognitive dysfunction in a large sample of cancer survivors with representation across a wide range of different types of cancer. A sample of 3108 post-treatment cancer survivors completed the 2010 LIVESTRONG survey as part of a larger study of cancer survivorship. Respondents completed standardized questions regarding current and past perceived cognitive dysfunction, as well as depressive symptoms, and demographic and medical variables. Current perceived cognitive dysfunction was reported by nearly half of respondents (45.7 %), acro...
Some cancer diagnoses and treatments can place patients at risk for infertility. The American Soc... more Some cancer diagnoses and treatments can place patients at risk for infertility. The American Society of Clinical Oncology recommends that health care providers address the possibility of infertility with cancer patients who are treated during their reproductive years; however, research suggests that many providers do not disclose the risk of infertility to their patients. This study examines adolescent/young adult (AYA) cancer survivors' use of and costs for fertility preservation (FP) over time. The study included 550 AYA cancer survivors diagnosed at the ages of 15 and 39 years between 2006 and 2012. Logistic regression analyses and chi-squared tests were conducted to identify factors associated with FP use, barriers, and expenses. One hundred eighty two (33%) of the AYA survivors took steps to preserve their fertility. Men, survivors who did not have children, those who received chemotherapy, and those who lived in the Northeast (vs. the South) were more likely to have FP. T...
There is a need to better understand the post-treatment concerns of the nearly 14 million cancer ... more There is a need to better understand the post-treatment concerns of the nearly 14 million cancer survivors alive in the United States today and their receipt of care. Methods: Using data from 2910 post-treatment cancer survivors from the 2006 or 2010 LIVESTRONG Surveys, we examined physical, emotional, and practical concerns, receipt of care, and trends in these outcomes at the population level. Results: 89% of respondents reported at least one physical concern (67% received associated post-treatment care); 90% reported at least one emotional concern (47% received care); and 45% reported at least one practical concern (36% received care). Female survivors, younger survivors, those who received more intensive treatment, and survivors without health insurance often reported a higher burden of post-treatment concerns though were less likely to have received post-treatment care. Conclusions: These results reinforce the importance of post-treatment survivorship and underscore the need fo...
Disclosure of the positive results of a human papillomavirus (HPV) test could mediate future tran... more Disclosure of the positive results of a human papillomavirus (HPV) test could mediate future transmission of HPV and facilitate women's medical care. During in-depth interviews with Hispanic women living on the Texas–Mexico border, we explored their reactions to learning they had HPV and issues related to disclosure. Only 18 of 42 participants understood that they were HPV+ and that HPV was a sexually transmitted infection (STI). Among these women, concerns about being HPV+ differed according to their age group. Although all expressed surprise and fear, single unattached women younger than 28 years were more concerned about financial issues, parental responses, and the possibility of cancer and its effects on their fertility. Women 28 years and older or who had more than one child feared disclosure to their partners would incur accusations of infidelity and/or abandonment. Interventions for HPV+ Hispanic women in underserved communities should respond to concerns related to the ...
ABSTRACT Purpose: Latino cancer survivors experience an unequal burden of unmet needs after treat... more ABSTRACT Purpose: Latino cancer survivors experience an unequal burden of unmet needs after treatment, which compromise their health care and wellness; experts recommend providing psychosocial services as an integral part of quality cancer care. Methods: Redes En Acción: The National Latino Cancer Research Network and LIVESTRONG partnered to conduct a randomized control trial utilizing trained, bilingual, bicultural patient navigators to improve wellness and access to psychosocial services among non-metastatic Latino breast cancer survivors from Texas and Chicago. The trial tests the efficacy of patient navigation (PN) in improving general and disease-specific quality of life (QoL), treatment compliance, and identification of mechanisms that may promote quality of life. The study involves a 2 X 4 randomized repeated measures design with an experimental condition (combined PN over three months with access to the LIVESTRONG Cancer Navigation Center [LCNC] services [PN+LCNC]) versus a control condition (PN only) as the between-groups factor, and time-point (baseline/pre-randomization [T1]; post-PN [3-months post-T1; T2], and 6- [T3] and 12-months [T4] follow-up after T2) as the within-groups factor. LCNC provides free, bilingual support to U.S. cancer survivors throughout the cancer journey. LCNC also refers survivors to services addressing their medical, economic and psychosocial needs, and monitors client contact and access outcomes. Preliminary Results: Ongoing active recruitment is 205 subjects. At conference we will present quality of life data on breast cancer participants, and lessons learned. Discussion: Limited work has addressed the psychosocial needs of Latino cancer survivors. Culturally sensitive patient navigation (PN) could address these needs and significantly improve cancer survivorship.
We sought to examine the existential challenges that cancer survivors may experience as they stri... more We sought to examine the existential challenges that cancer survivors may experience as they strive to make meaning, regain their self-identity, cope with fear of recurrence, and experience feelings of grief and guilt. Lymphoma survivors (n = 429) completed the 2010 LIVE STRONG: survey and provided responses about meaning, cancer worry, security, identity, grief, guilt, and perceived functional impairment due to these concerns. Most survivors (73%-86%) endorsed existential concerns, with 30-39 percent reporting related perceived functional impairment. Concerns were associated with being female, younger, unmarried, and having undergone stem cell transplantation. Lymphoma survivors experience existential challenges that impact their life even years after diagnosis.
Journal of oncology practice / American Society of Clinical Oncology, Jan 30, 2014
The adolescent and young adult (AYA) population is underserved because of unique late-effect issu... more The adolescent and young adult (AYA) population is underserved because of unique late-effect issues, particularly future fertility. This study sought to establish rates of documentation of discussion of risk of infertility, fertility preservation (FP) options, and referrals to fertility specialists in AYA patients' medical records at four cancer centers. All centers reviewed randomized records within the top four AYA disease sites (breast, leukemia/lymphoma, sarcoma, and testicular). Eligible records included those of patients: diagnosed in 2011, with no prior receipt of gonadotoxic therapy; age 18 to 45 years; with no multiple primary cancers; and for whom record was not second opinion. Quality Oncology Practice Initiative methods were used to evaluate documentation of discussion of risk of infertility, discussion of FP options, and referral to a fertility specialist. Of 231 records, 26% documented infertility risk discussion, 24% documented FP option discussion, and 13% docume...
Many of the 14 million cancer survivors in the USA live with physical, emotional and day-to-day c... more Many of the 14 million cancer survivors in the USA live with physical, emotional and day-to-day concerns related to their cancer long after their treatment ends. Addressing the needs of the growing cancer-survivor population will be a considerable task. In this article, Ruth Rechis-a 20-year survivor of Hodgkin lymphoma-describes her personal account of surviving cancer and her experience as a researcher and advocate in the field of survivorship. Results from a national USA survey on survivorship are shared, illustrating gaps in meeting the needs of long-term survivors. A list of 'essential elements' of survivorship care is highlighted to introduce all practitioners to the components necessary for the provision of care after treatment ends. Finally, Rechis provides recommendations for engaging survivors as active participants in their post-treatment, long-term survivorship care and to ensure appropriate care is universally available as part of patient-centred comprehensive c...
Journal of cancer survivorship : research and practice, Jan 4, 2015
With cancer survivors now numbering over 13 million in the United States, and expected to continu... more With cancer survivors now numbering over 13 million in the United States, and expected to continue to increase, it is important to consider the needs of this growing population. In the literature, one of the most common complaints by cancer survivors is perceived cognitive dysfunction. Since the preponderance of the research has focused on breast cancer survivors, the purpose of the present study was to explore the prevalence and correlates of perceived cognitive dysfunction in a large sample of cancer survivors with representation across a wide range of different types of cancer. A sample of 3108 post-treatment cancer survivors completed the 2010 LIVESTRONG survey as part of a larger study of cancer survivorship. Respondents completed standardized questions regarding current and past perceived cognitive dysfunction, as well as depressive symptoms, and demographic and medical variables. Current perceived cognitive dysfunction was reported by nearly half of respondents (45.7 %), acro...
Some cancer diagnoses and treatments can place patients at risk for infertility. The American Soc... more Some cancer diagnoses and treatments can place patients at risk for infertility. The American Society of Clinical Oncology recommends that health care providers address the possibility of infertility with cancer patients who are treated during their reproductive years; however, research suggests that many providers do not disclose the risk of infertility to their patients. This study examines adolescent/young adult (AYA) cancer survivors' use of and costs for fertility preservation (FP) over time. The study included 550 AYA cancer survivors diagnosed at the ages of 15 and 39 years between 2006 and 2012. Logistic regression analyses and chi-squared tests were conducted to identify factors associated with FP use, barriers, and expenses. One hundred eighty two (33%) of the AYA survivors took steps to preserve their fertility. Men, survivors who did not have children, those who received chemotherapy, and those who lived in the Northeast (vs. the South) were more likely to have FP. T...
There is a need to better understand the post-treatment concerns of the nearly 14 million cancer ... more There is a need to better understand the post-treatment concerns of the nearly 14 million cancer survivors alive in the United States today and their receipt of care. Methods: Using data from 2910 post-treatment cancer survivors from the 2006 or 2010 LIVESTRONG Surveys, we examined physical, emotional, and practical concerns, receipt of care, and trends in these outcomes at the population level. Results: 89% of respondents reported at least one physical concern (67% received associated post-treatment care); 90% reported at least one emotional concern (47% received care); and 45% reported at least one practical concern (36% received care). Female survivors, younger survivors, those who received more intensive treatment, and survivors without health insurance often reported a higher burden of post-treatment concerns though were less likely to have received post-treatment care. Conclusions: These results reinforce the importance of post-treatment survivorship and underscore the need fo...
Disclosure of the positive results of a human papillomavirus (HPV) test could mediate future tran... more Disclosure of the positive results of a human papillomavirus (HPV) test could mediate future transmission of HPV and facilitate women's medical care. During in-depth interviews with Hispanic women living on the Texas–Mexico border, we explored their reactions to learning they had HPV and issues related to disclosure. Only 18 of 42 participants understood that they were HPV+ and that HPV was a sexually transmitted infection (STI). Among these women, concerns about being HPV+ differed according to their age group. Although all expressed surprise and fear, single unattached women younger than 28 years were more concerned about financial issues, parental responses, and the possibility of cancer and its effects on their fertility. Women 28 years and older or who had more than one child feared disclosure to their partners would incur accusations of infidelity and/or abandonment. Interventions for HPV+ Hispanic women in underserved communities should respond to concerns related to the ...
ABSTRACT Purpose: Latino cancer survivors experience an unequal burden of unmet needs after treat... more ABSTRACT Purpose: Latino cancer survivors experience an unequal burden of unmet needs after treatment, which compromise their health care and wellness; experts recommend providing psychosocial services as an integral part of quality cancer care. Methods: Redes En Acción: The National Latino Cancer Research Network and LIVESTRONG partnered to conduct a randomized control trial utilizing trained, bilingual, bicultural patient navigators to improve wellness and access to psychosocial services among non-metastatic Latino breast cancer survivors from Texas and Chicago. The trial tests the efficacy of patient navigation (PN) in improving general and disease-specific quality of life (QoL), treatment compliance, and identification of mechanisms that may promote quality of life. The study involves a 2 X 4 randomized repeated measures design with an experimental condition (combined PN over three months with access to the LIVESTRONG Cancer Navigation Center [LCNC] services [PN+LCNC]) versus a control condition (PN only) as the between-groups factor, and time-point (baseline/pre-randomization [T1]; post-PN [3-months post-T1; T2], and 6- [T3] and 12-months [T4] follow-up after T2) as the within-groups factor. LCNC provides free, bilingual support to U.S. cancer survivors throughout the cancer journey. LCNC also refers survivors to services addressing their medical, economic and psychosocial needs, and monitors client contact and access outcomes. Preliminary Results: Ongoing active recruitment is 205 subjects. At conference we will present quality of life data on breast cancer participants, and lessons learned. Discussion: Limited work has addressed the psychosocial needs of Latino cancer survivors. Culturally sensitive patient navigation (PN) could address these needs and significantly improve cancer survivorship.
We sought to examine the existential challenges that cancer survivors may experience as they stri... more We sought to examine the existential challenges that cancer survivors may experience as they strive to make meaning, regain their self-identity, cope with fear of recurrence, and experience feelings of grief and guilt. Lymphoma survivors (n = 429) completed the 2010 LIVE STRONG: survey and provided responses about meaning, cancer worry, security, identity, grief, guilt, and perceived functional impairment due to these concerns. Most survivors (73%-86%) endorsed existential concerns, with 30-39 percent reporting related perceived functional impairment. Concerns were associated with being female, younger, unmarried, and having undergone stem cell transplantation. Lymphoma survivors experience existential challenges that impact their life even years after diagnosis.
Journal of oncology practice / American Society of Clinical Oncology, Jan 30, 2014
The adolescent and young adult (AYA) population is underserved because of unique late-effect issu... more The adolescent and young adult (AYA) population is underserved because of unique late-effect issues, particularly future fertility. This study sought to establish rates of documentation of discussion of risk of infertility, fertility preservation (FP) options, and referrals to fertility specialists in AYA patients' medical records at four cancer centers. All centers reviewed randomized records within the top four AYA disease sites (breast, leukemia/lymphoma, sarcoma, and testicular). Eligible records included those of patients: diagnosed in 2011, with no prior receipt of gonadotoxic therapy; age 18 to 45 years; with no multiple primary cancers; and for whom record was not second opinion. Quality Oncology Practice Initiative methods were used to evaluate documentation of discussion of risk of infertility, discussion of FP options, and referral to a fertility specialist. Of 231 records, 26% documented infertility risk discussion, 24% documented FP option discussion, and 13% docume...
Many of the 14 million cancer survivors in the USA live with physical, emotional and day-to-day c... more Many of the 14 million cancer survivors in the USA live with physical, emotional and day-to-day concerns related to their cancer long after their treatment ends. Addressing the needs of the growing cancer-survivor population will be a considerable task. In this article, Ruth Rechis-a 20-year survivor of Hodgkin lymphoma-describes her personal account of surviving cancer and her experience as a researcher and advocate in the field of survivorship. Results from a national USA survey on survivorship are shared, illustrating gaps in meeting the needs of long-term survivors. A list of 'essential elements' of survivorship care is highlighted to introduce all practitioners to the components necessary for the provision of care after treatment ends. Finally, Rechis provides recommendations for engaging survivors as active participants in their post-treatment, long-term survivorship care and to ensure appropriate care is universally available as part of patient-centred comprehensive c...
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Papers by Sarah Arvey