When Cancer Survivors Become Cancer Caregivers: Psychosocial Effects on Couples (RP404)

2020 ◽  
Vol 60 (1) ◽  
pp. 216
Author(s):  
Maija Reblin ◽  
Dana Ketcher ◽  
Amy Otto
2021 ◽  
Author(s):  
Laura van Iersel ◽  
Renee L Mulder ◽  
Christian Denzer ◽  
Laurie E Cohen ◽  
Helen A Spoudeas ◽  
...  

Abstract Endocrine disorders in survivors of childhood, adolescent, and young adult (CAYA) cancers are associated with substantial adverse physical and psychosocial effects. To improve appropriate and timely endocrine screening and referral to a specialist, the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG) aims to develop evidence and expert consensus-based guidelines for healthcare providers that harmonize recommendations for surveillance of endocrine disorders in CAYA cancer survivors. Existing IGHG surveillance recommendations for premature ovarian insufficiency, gonadotoxicity in males, fertility preservation, and thyroid cancer are summarized. For hypothalamic-pituitary (HP) dysfunction, new surveillance recommendations were formulated by a guideline panel consisting of 42 interdisciplinary international experts. A systematic literature search was performed in MEDLINE (through PubMed) for clinically relevant questions concerning HP dysfunction. Literature was screened for eligibility. Recommendations were formulated by drawing conclusions from quality assessment of all evidence, considering the potential benefits of early detection and appropriate management. Healthcare providers should be aware that CAYA cancer survivors have an increased risk for endocrine disorders, including HP dysfunction. Regular surveillance with clinical history, anthropomorphic measures, physical examination, and laboratory measurements is recommended in at-risk survivors. When endocrine disorders are suspected, healthcare providers should proceed with timely referrals to specialized services. These international evidence-based recommendations for surveillance of endocrine disorders in CAYA cancer survivors inform healthcare providers and highlight the need for long-term endocrine follow-up care in subgroups of survivors and elucidate opportunities for further research.


2017 ◽  
Vol 35 (5_suppl) ◽  
pp. 207-207
Author(s):  
Smitha Pabbathi ◽  
Ariana Abid ◽  
Kanan Mehta ◽  
Dinorah Tyson Martinez ◽  
Carrie Hall ◽  
...  

207 Background: Even after enduring successful treatment of their cancer, the late physical and psychosocial effects of treatment often continue to haunt as many as 50% of survivors. Furthermore, the needs of cancer survivors differ from those undergoing active treatment. However, there is a lack of comprehensive assessment for providers caring for survivors. Therefore, there is a need for one tool to assess the physical and psychosocial needs as well as evaluate their severity when initially establishing care in general survivorship clinic. In this study, we determine the most commonly identified of these needs as well as the degree to which they impact overall health of this population. Methods: A retrospective chart review of 220 patient records from the past six years in General Survivorship Clinic using Moffitt Cancer Center’s EHR was performed. All patients (ages 18-85 years) diagnosed with cancer without evidence of current disease and who had complete Clinical Needs Assessment Tool for Cancer Survivors (CNAT-CS) were eligible for inclusion. The CNAT- CS is a questionnaire of 36 items on which survivors identify as “not a concern”, “is a concern but I am managing”, or “I need help”. Results: A majority (65.5%) was female and white (81.3%); African Americans made up 11.4%. The mean age was 57.6 (SD = 11.3). Subjects had survived a variety of types of cancer with more than half (57%) having breast cancer. Their mean distress score was 2.75 (SD = 2.86). Fear of recurrence was the concern most often identified (56%), followed by feeling of high stress (50%), sleep disturbances (49%) and memory/ attention difficulties (40%). Highest scores were found on items about fear of the cancer returning (Mean = 0.71; SD = .55), information needed for follow-up care (mean = .64; SD = .59), stress in my life (mean = .60; SD = .65) and trouble with my memory/attention (mean = 0.52; SD = .69). Conclusions: These results indicate a relatively low mean distress score from the distress thermometer. Areas identified most frequently as a concern also tended to be the areas with the highest mean scores. Although almost 20% of survivors were in minority groups, ethnic minorities were underrepresented in this sample. Thus, future studies should focus on increasing the representativeness of the sample.


Head & Neck ◽  
2005 ◽  
Vol 27 (4) ◽  
pp. 281-288 ◽  
Author(s):  
Richard L. Holloway ◽  
James L. Hellewell ◽  
Anne M. Marbella ◽  
Peter M. Layde ◽  
Katherine B. Myers ◽  
...  

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 177-177
Author(s):  
Pamela Kim Washington

177 Background: There is strong evidence that physical activity mitigates negative psychosocial effects and sequelae associated with adjuvant chemotherapy among cancer survivors. Given the many benefits of physical activity in this population, it is important to understand the factors that influence continued participation post diagnosis. One possible determinant that has received little attention to date is the influence of social support. This study is unique in that it is the first to explore the role of social support for physical activity among young survivors of breast cancer through the use of mixed methods. Methods: Survey data (n = 273) were used to determine actual levels of moderate and vigorous physical activity. These data were subsequently used to identify women of interest to participate in face-to-face qualitative interviews. Semi-structured interviews (n = 31) were conducted with a subset of women from the quantitative sample. Participants were Bay Area women who were age 55 or less and premenopausal at the time of diagnosis and who also received adjuvant chemotherapy. Following qualitative analyses, hypotheses were developed to test the association between social support and obtaining recommended levels of physical activity through the use of logistic regression analyses using a sample of 273 women. Results: Qualitative analyses indicated that women who have a partner with whom they engage in physical activity are more likely to adopt and maintain physical activity behaviors over time. Regression analyses provide evidence that women who have support specifically for physical activity are more likely to meet recommended activity guidelines (b = .030, OR = 1.030 per unit of scale, p = .003, C.I. = 1.01 – 1.05). Conclusions: When considering correlates of physical activity, social support specific to physical activity may be important or even pivotal in assisting survivors to adopt and/or maintain participation in a given activity at recommended levels.


Author(s):  
Lisa Gallicchio ◽  
Emily Tonorezos ◽  
Janet S de Moor ◽  
Joanne Elena ◽  
Margaret Farrell ◽  
...  

Abstract Today, there are more than 16.9 million cancer survivors in the United States; this number is projected to grow to 22.2 million by 2030. While much progress has been made in understanding cancer survivors needs and in improving survivorship care since the seminal 2006 Institute of Medicine report From Cancer Patient to Cancer Survivor: Lost in Transition, there is a need to identify evidence gaps and research priorities pertaining to cancer survivorship. Thus, in April 2019, the National Cancer Institute convened grant-funded extramural cancer survivorship researchers, representatives of professional organizations, cancer survivors, and advocates for a one-day in-person meeting. At this meeting, and in a subsequent webinar aimed at soliciting input from the wider survivorship community, evidence gaps and ideas for next steps in the following six areas, identified from the 2006 Institute of Medicine report, were discussed: surveillance for recurrence and new cancers, management of long-term and late physical effects, management of long-term and late psychosocial effects, health promotion, care coordination, and financial hardship. Identified evidence gaps and next steps across the areas included the need to understand and address disparities among cancer survivors, to conduct longitudinal studies as well as longer-term (>5 years post-diagnosis) follow-up studies, to leverage existing data, and to incorporate implementation science strategies to translate findings into practice. Designing studies to address these broad evidence gaps, as well as those identified in each area, will expand our understanding of cancer survivors’ diverse needs, ultimately leading to the development and delivery of more comprehensive evidence-based quality care.


2019 ◽  
pp. 272-287
Author(s):  
Rachel S. Cannady ◽  
Katherine Sharpe

The American Cancer Society (ACS) is committed to addressing the needs of cancer caregivers. Many caregivers are unexpectedly thrust into their role as a caregiver with little or no preparation. A wide range of support services and caregiver resources is needed to help cancer caregivers. Consistent with the ACS’s mission and goals to measurably improve the quality of life of all cancer survivors and their caregivers from the time of diagnosis through the balance of life, the ACS has developed a program of work to meet the specific needs of family members and friends providing care for those diagnosed. This chapter describes the ACS Caregiver Support Program, including specific initiatives aimed at optimally supporting cancer caregivers across the care trajectory.


2013 ◽  
Vol 31 (16) ◽  
pp. 1961-1969 ◽  
Author(s):  
Laura P. Forsythe ◽  
Erin E. Kent ◽  
Kathryn E. Weaver ◽  
Natasha Buchanan ◽  
Nikki A. Hawkins ◽  
...  

Purpose Given the importance of psychosocial care for cancer survivors, this study used population-based data to characterize survivors who reported a discussion with health care provider(s) about the psychosocial effects of cancer and who reported using professional counseling or support groups (PCSG) and tested associations between receipt of psychosocial care and satisfaction with care. Patients and Methods We examined survivors of adult cancers from the 2010 National Health Interview Survey (N = 1,777). Multivariable logistic regression models examined factors associated with receipt of and satisfaction with psychosocial care. Results Most survivors (55.1%) reported neither provider discussions nor use of PCSG; 31.4% reported provider discussion only, 4.4% reported use of PCSG only, and 8.9% reported both. Non-Hispanic blacks (v non-Hispanic whites), married survivors, survivors of breast cancer (v prostate or less prevalent cancers), those treated with chemotherapy, and survivors reporting past research study/clinical trial participation were more likely to report provider discussion(s) (P < .01). Hispanics (v non-Hispanic whites), survivors age 40 to 49 years (v ≤ 39 years), survivors of breast cancer (v melanoma or less prevalent cancers), those diagnosed ≤ 1 year ago (v > 5 years ago), survivors treated with radiation, and past research participants were more likely to report use of PCSG (P < .05). Survivors reporting any psychosocial care were more likely to be “very satisfied” with how their needs were met (P < .001). Conclusion Many survivors do not report a discussion with providers about the psychosocial effects of cancer, which reflects a missed opportunity to connect survivors to psychosocial services. These data can benchmark the success of efforts to improve access to cancer-related psychosocial care.


2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 38-38
Author(s):  
Keith Edward Argenbright ◽  
Emily Berry ◽  
Tracy Mazour ◽  
Stephanie L. Lawrence

38 Background: As survival rates continue to improve, many forms of cancer are now regarded as chronic diseases requiring long-term follow-up. This survivorship phase of care represents a distinct opportunity to improve the health and quality of life for cancer survivors, addressing the lingering medical and psychosocial effects of illness, recurrent or new cancers, and promoting health behavior changes. Evidence-based cancer survivorship programs are typically limited in scope and only found in large cancer centers because they are costly and poorly reimbursed. As a result, UT Southwestern Moncrief Cancer Institute (UTSW-MCI) mobilized its clinic to provide essential survivorship services to the estimated 15,000 underserved cancer survivors in geographically remote areas of North Texas. Methods: UTSW-MCI provides survivorship care to Medicaid-enrolled and uninsured patients within a nine county service area using a custom-built mobile health unit. Staffed with an experienced team of nurses, social workers, dietitians, exercise specialists and physician assistant, services on the mobile clinic include: cancer screening and surveillance; medical management of long-term side effects of treatment; treatment summary and care plans; dietary evaluations and healthy lifestyle education; psychosocial evaluations, care coordination and navigation to financial assistance; and assessments for balance, immobility, range of motion, and safe physical activity. In-house providers with the ambulatory clinic are also able to see patients on the mobile unit using telemedicine. These services include genetic counseling, physician assistant evaluations, and psychological counseling. Results: After six months, mobile clinic enrollments represent more than 10% (N = 28) of the survivorship program patient population and nearly 15% (N = 130) of completed encounters, including 28 RN assessments, 26 Social Work evaluations, 21 Dietitian assessments, 53 Exercise sessions, and 3 PA consultations. Conclusions: This innovative survivorship care model addresses barriers that impede access to care to improve both the health of medically underserved cancer survivors and the experience of care while reducing the cost of care without compromising quality.


2018 ◽  
Vol 36 (30_suppl) ◽  
pp. 162-162
Author(s):  
Martha Raymond

162 Background: The latest 2016 data from the National Cancer Institute’s Surveillance, Epidemiology & End Results (SEER) Program estimates there are 15.5 million cancer survivors in the U.S. Millions of cancer survivors rely on cancer caregivers every day. Cancer caregivers play a vital role throughout the care continuum, and greatly impact a patient’s quality of life. Caring for a cancer patient affects all aspects of a caregiver’s life, including: changes to daily routine, work and family life; financial hardship; and emotional and psychological distress. Our study explores the cancer burden, unmet needs and well-being of cancer caregivers. Methods: Beginning in September 2015-September 2017, our professional facilitator with over 25 years of cancer advocacy experience hosted nationwide caregiver focus groups. Primary goals were reaching caregivers in rural, urban and community oncology settings to gain perspective from diverse populations. We met with cancer caregivers in 32 states via traditional focus group settings and online via facetime conferencing. Results: 778 caregivers (42% male, 58% female) participated in our focus groups. 88% reported high levels of stress and anxiety (I struggle to concentrate & walk around feeling like I was kicked in the stomach); 78% were employed full time with an average of an additional 20+ hours per week devoted to caregiving responsibilities (Pulled in every direction – need balance); 66% reported self-health decline (No time for me – worry I will get sick and then what?) Describing in one word their current feelings, the top three responses were: Exhausted; Lonely; Overwhelmed. Conclusions: The burden of caring for a cancer patient is immense and all-consuming. Our conversations with caregivers will continue as we collaborate with partners, develop meaningful programs, and expand our outreach and resources to help lessen the burdens of cancer on caregivers.


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