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The prevalence of and mortality from chronic kidney disease (CKD) are high among African Americans. Interventions to improve knowledge of the likely illness course and the benefits and risks of life-sustaining treatment at the end-of-life are needed for African Americans with CKD and their surrogate decision makers. Nineteen African Americans with stage 5 CKD and their surrogates were randomized to either patient-centered advance care planning (PC-ACP) or usual care. PC-ACP dyads showed greater improvement in congruence in end-of-life treatment preferences (p < .05) and higher perceived quality of communication (p < .05) than do control dyads, but the two groups did not differ on other primary outcomes or acceptability measures, such as perceptions of cultural appropriateness. At posttest, 80% of patients in the intervention group reported that they would choose to continue all life-sustaining treatments in a situation of a low chance of survival, whereas 28.6% of patients in the control group reported that they would make that choice. At posttest, 90% of patients in the intervention group reported that they would choose to undergo cardiopulmonary resuscitation even if the chance of surviving the attempt would be low, whereas 57% of patients in the control group reported that they would make that choice. PC-ACP can be effective in improving patient and surrogate congruence in end-of-life treatment preferences. However, the results suggest a need for further improvements in the intervention to enhance cultural appropriateness for African Americans with CKD. ©2010 Elsevier Inc. All rights reserved.Copyright © 2010 by Elsevier Inc. [ABSTRACT FROM AUTHOR]

BACKGROUND: The vast majority of cases of ovarian cancer are diagnosed at stage III or IV, and five-year survival rates after diagnosis at these stages are 71% and 31%, respectively. Although a consensus among researchers on the signs and symptoms of ovarian cancer has evolved over time, whether women themselves know them isn't clear. OBJECTIVE: To assess how well informed women ages 40 and older are of ovarian cancer symptoms and risk factors. METHODS: In 2006 the National Ovarian Cancer Coalition developed an online survey with a private research firm that asked respondents about their familiarity with ovarian cancer symptoms and risk factors. Women were also asked whether they thought the Papanicolaou test diagnosed ovarian cancer (a common misconception) and whether they had discussed ovarian cancer with a physician. If they had discussed the issue, they were asked who had initiated the conversation. Data from a convenience sample of 1,235 responses to the online survey were analyzed, using descriptive and comparative statistics. Respondents were categorized by age, education level, race or ethnicity, and whether or not they knew someone with ovarian cancer. Comparisons were made to determine whether demographic factors were associated with women's knowledge of specific symptoms and risk factors associated with ovarian cancer. RESULTS: Only 15% of respondents were familiar with ovarian cancer symptoms, and more than two-thirds incorrectly believed that the Papanicolaou test diagnoses the disease. Four out of five had never had a conversation with a physician about symptoms and risk factors; among these, more than half assumed that because their physician had not initiated such a discussion, ovarian cancer was 'not an issue.' Of the 19% of women who'd had such discussions, two-thirds had initiated them themselves. Respondents were more knowledgeable about risk factors; 59% correctly identified personal or family history of breast, ovarian, or colon cancer, and half of respondents correctly identified genetic predisposition, as risk factors. CONCLUSIONS: Awareness of ovarian cancer symptoms and risk factors among women in the general population is low. Ovarian cancer is often diagnosed at late stages, when cure is difficult; consequently, heightening women's awareness of risk factors and symptoms might help to reduce delays in diagnosis. Nurses should provide women with specific information on symptoms and risk factors in educating them on ovarian cancer. [ABSTRACT FROM AUTHOR]

OBJECTIVE: The goal of this study was to determine whether the provision of individually tailored sensory and coping information about side effects and specific information to counter misconceptions would enhance pain management.DESIGN: Pilot.SETTING: Outpatient clinic of a comprehensive cancer center affiliated with a mid-western university hospital.POPULATION: Seventy-seven women with metastatic or progressive gynecologic cancer who had experienced cancer-related pain in the last 2 weeks were invited to participate, and 43 (56%) agreed to do so. Participants ranged in age from 37 to 79 years.INTERVENTIONS: Women received individually tailored sensory and coping information about side effects and specific information to counter misconceptions about pain management. The impact of the intervention was assessed by (a) presence of patient-related barriers to pain management as measured by the Barriers Questionnaire, (b) adequacy of analgesic used as measured by the Pain Management Index, (c) severity of analgesic side effects as measured by the Medication Side Effect Checklist (MSEC), (d) pain intensity as measured by the Brief Pain Inventory (BPI), (e) pain interference as measured by the BPI, (f) overall quality of life as measured by the (FACT-G) Functional Assessment Cancer Therapy-General, and (g) participant satisfaction as measured by Information Evaluation.MAIN OUTCOME MEASURE(S): The intervention appears to have had no impact on selected outcomes, given that participants in the experimental condition did not show differential improvement on any of these variables when compared to participants in the control group. On the other hand, it appears that being in the study may have had an impact because all women experienced a decrease in barriers scores and a decrease in pain interference with life. It may be that completing baseline measures sensitized study participants to significant issues in pain management, leading all of them (not just those in the experimental group) to seek out information about pain control.RESULTS/CONCLUSIONS: Current work is in progress testing an intervention that explores persons' cognitive representations (schema) of cancer pain. By discussing all facets of the representation of cancer pain, both the patient and the intervener will see how the beliefs we are seeking to change (barriers) are embedded in and connected to other important ideas. In this way we hope to enhance the possibility of changing beliefs and behaviors that may act as barriers to effective pain control. [CINAHL abstract] [ABSTRACT FROM AUTHOR]

OBJECTIVE: Based on a stress-coping perspective, the present study was designed to examine links between patients' beliefs (barriers), coping (analgesic use), and quality of life (QOL) outcomes. DESIGN: Not given. SETTING: Outpatient clinic. POPULATION: Participants were outpatients from either a comprehensive cancer center or a private oncology clinic. Inclusion criteria for the parent (intervention) study were diagnosis of metastatic breast or prostate cancer, lung cancer or multiple myeloma. Three hundred sixteen persons were invited to join the study and 240 did so. Of those, 182 reported cancer-related pain; these are the participants involved in this report. Participants were 114 women and 68 men who ranged in age from 31 to 84 years. INTERVENTIONS: Eligible patients were approached by a nurse in the outpatient clinic. After consent, study personnel interviewed the patient to collect data about pain history and recent (past week) analgesic use. The patient was asked to complete the packet of self-report questionnaires while waiting to be seen by a clinician. The Barriers Questionnaire (BQ) is a 27-item instrument designed to measure the extent to which patients have concerns about reporting pain and using analgesics. Three items from the Brief Pain Inventory (BPI) were used to assess pain severity. Coping was operationalized as analgesic use and was measured with a revised version of the Pain Management Index (PMI). The Medication Side-Effect Checklist (MSEC) was used to assess severity of analgesic side-effects. Three facets of impaired QOL were examined. The Center for Epidemiologic Studies Depression Scale (CES-D) was used to assess depressed mood. MAIN OUTCOME MEASURE(S): Means for pain severity, barriers, side-effect severity, and interference with life activities were low to moderate. Depression scores were moderate to high. Perceived health varied, with 2 (1%) of the patients viewing their health as very poor, 25 (14%) seeing it as poor, 50 (28%) as fair, 87 (48%) as good, and 17 (9%) as excellent. Coping was inversely associated with pain severity: the more effective the analgesic use the lower was the patient's 'pain now' score. Unexpectedly, coping was not associated with side-effect severity. However, both pain severity and side effects were positively related to impairments in QOL, with the exception that pain severity was not significantly related to depression. RESULTS/CONCLUSIONS: Taken as a whole, the findings point to two areas in which interventions are needed in order to maximize QOL. First, it would be useful to test the impact of informational interventions on beliefs that are barriers to analgesic use. In addition, further attention should be given to refining a measure of coping. As recommended by current practice guidelines (U.S. Department of Health and Human Services, 1994), proactive management of analgesic side effects needs to become a routine facet of pain management. [CINAHL abstract] [ABSTRACT FROM AUTHOR]

PURPOSE/OBJECTIVES: To identify and compare symptom clusters in individuals with chronic health problems with cancer as a comorbidity versus individuals with chronic health problems who do not have cancer as a comorbidity and to explore the effect of symptoms on their quality of life. DESIGN: Secondary analysis of data from two studies. Study 1 was an investigation of the efficacy of an intervention to improve medication adherence in patients with rheumatoid arthritis (RA). Study 2 was an investigation of the efficacy of an intervention for urinary incontinence (UI) in older adults. SETTING: School of Nursing at the University of Pittsburgh. SAMPLE: The sample for study 1 was comprised of 639 adults with RA. The sample for study 2 was comprised of 407 adults with UI. A total of 154 (15%) subjects had a history of cancer, 56 (9%) of the subjects with RA and 98 (25%) of the subjects with UI. METHODS: Analysis of existing comorbidity and symptom data collected from both studies. MAIN RESEARCH VARIABLES: Symptom clusters, chronic disease, and cancer as a comorbidity. FINDINGS: Individuals with chronic health problems who have cancer may not have unique symptom clusters compared to individuals with chronic health problems who do not have cancer. CONCLUSIONS: The symptom clusters experienced by the study participants may be more related to their primary chronic health problems and comorbidities. IMPLICATIONS FOR NURSING: Additional studies are needed to examine symptom clusters in cancer survivors. As individuals are living longer with the disease, a comprehensive understanding of the symptom clusters that may be unique to cancer survivors with comorbidities is critical. [Abstract for this article also available on page 41 of printed version. The full text of this article can be accessed at www.ons.org/publications/journals/ONF [ABSTRACT FROM AUTHOR]

Understanding gender variations in self-advocacy can help oncology clinicians support the educational needs of cancer survivors. This study aims to examine the role of gender along with additional other sociodemographic variables in how cancer survivors self-advocate including their engagement in decision-making, communication with healthcare providers, and use of social support. Data from two cross-sectional descriptive studies were combined for analyses. Each study used convenience sampling methods to recruit adults (≥ 18 years old) with a history of invasive cancer who had English literacy from cancer clinics and community advocacy groups. The first study recruited women (n = 317), and the second study recruited men (n = 179). In both studies, participants completed two assessments of self-advocacy: Self-Advocacy in Cancer Survivorship (SACS) Scale and the Patient Self-Advocacy Scale. We built a linear regression model to test the association between gender and self-advocacy total and subscale scores controlling for covariates. N = 496 participants completed study procedures between 2014 and 2022. On both self-advocacy scales, women reported higher self-advocacy scores compared to men, with women's higher scores on the SACS subscales of connected strength and informed decision-making driving the gender difference in cancer-specific self-advocacy. Self-advocacy behaviors are associated with gender, most notably by way of individuals' ability to derive strength through social connection. Women tend to have greater engagement in care with larger and more meaningful social networks, while men report less engagement. Educational materials for cancer survivors should leverage gender-associated self-advocacy skills and bolster skills that require support., (© 2024. The Author(s) under exclusive licence to American Association for Cancer Education.)

Background: Family caregivers of individuals with gynecologic cancer experience high levels of distress. Web-based caregiver support interventions have demonstrated efficacy in improving caregiver outcomes. However, the lack of portability could be a limitation. Mobile health (mHealth) apps could fill this gap and facilitate communication between patient-caregiver dyads., Objective: We sought to obtain information on desired usage and features to be used to design an mHealth self-management support app targeting both patients with gynecologic cancer and their caregivers., Methods: We conducted Zoom focus groups with women who had been treated for gynecologic cancers (ovarian, fallopian, primary peritoneal, uterine, endometrial, cervical, and vulvar); patients were also asked to invite a self-identified "closest support person" (caregiver). A semistructured focus group guide was used to elicit information on patients' and caregivers' perceived gaps in information and support, desired features of an mHealth app, and interest in and preferences for app usage. After transcription, rapid qualitative analysis using a thematic matrix was used to identify common themes across groups., Results: A total of 8 groups were held. The final sample included 41 individuals with gynecologic cancer and 22 support persons or caregivers (total n=63). Patients were aged between 32 and 84 years, and most (38/41, 93%) were White and married. For caregivers (n=22), 15 (68%) identified as male and 7 (32%) as female, with ages ranging between 19 and 81 years. Overall, 59% (n=13) of caregivers were spouses. Questions geared at eliciting 3 a priori topics yielded the following themes: topic 1-gaps in information and support: finding relevant information is time-consuming; patients and caregivers lack confidence in deciding the urgency of problems that arise and from whom to seek information and guidance; topic 2-desired features of the mHealth app: patients and caregivers desire centralized, curated, trustworthy information; they desire timely recommendations tailored to specific personal and cancer-related needs; they desire opportunities to interact with clinical and peer experts through the app; and topic 3-interest and preferences for app usage: need for private space in the app for patients and caregivers to get information and support without the others' knowledge; patients and caregivers desire having control over sharing of information with other family members., Conclusions: Designing a single mHealth app to be used by patients and caregivers presents unique challenges for intervention designers and app developers. Implications of the study suggest that app developers need to prioritize flexibility in app functionality and provide individuals the ability to control information sharing between patients and caregivers., (©Grace B Campbell, Hansol Kim, Tara C Klinedinst, Julie Klinger, Young Ji Lee, Heidi S Donovan. Originally published in JMIR Cancer (https://cancer.jmir.org), 03.10.2024.)

Purpose: Family caregivers (CGs) of individuals with cancer are increasingly relied upon to provide long-term, sometimes intense care, although their integration into clinical cancer care remains minimal. The Caregiver Advocacy, Research, and Education (CARE) Center is a novel nurse-led academic-clinical partnership to support family CGs of individuals with gynecologic cancer. This study aims to describe the implementation of the Center protocols and report metrics of CG needs and Center support., Materials and Methods: The Center's goals are to identify, assess, and provide tailored support to CGs. Initially, Center protocols included assessment of CGs' self-identified distress (distress thermometer, 0 = no distress to 10 = extreme distress) and needs (yes or no). Tailored support on the basis of CG distress was provided by in-person and remote staff who provided complementary, concurrent support based on CG need: evidence-based self-management guides, self-management support, referral to specialty services. Center documentation was analyzed to describe Center reach and CG distress., Results: From November 2019 to June 2023, CGs (N = 1,250) were identified through referrals, new patient outreach, and inpatient visits. Seven hundred and six CGs (56.5%) were assessed through a needs-based assessment, and 515 (41.2%) CGs received tailored support. CGs were mostly men (53.0%) and the mean distress was 4.4/10 (standard deviation, 3.1). CG distress was moderately associated with CG needs including maintaining emotional (ρ = 0.40; P < .001) and physical (ρ = 0.31; P < .001) health and managing patient symptoms (ρ = 0.33; P < .001)., Conclusion: Center protocols facilitate identification of high-need CGs within a cancer clinic. Future research will longitudinally evaluate the impact of Center protocols on CG and patient outcomes, incorporating updated assessment tools.

Objectives: Minimally invasive surgery for treatment of gynecologic malignancies is associated with decreased pain, fewer complications, earlier return to activity, lower cost, and shorter hospital stays. Patients are often discharged the day of surgery, but occasionally stay overnight due to prolonged post-anesthesia care unit (PACU) stays. The objective of this study was to identify risk factors for prolonged PACU length of stay (LOS)., Methods: This is a single institution retrospective review of patients who underwent minimally invasive hysterectomy for gynecologic cancer from 2019 to 2022 and had a hospital stay <24-h. The primary outcome was PACU LOS. Demographics, pre-operative diagnoses, and surgical characteristics were recorded. After Box-Cox transformation, linear regression was used to determine significant predictors of PACU LOS., Results: For the 661 patients identified, median PACU LOS was 5.04 h (range 2.16-23.76 h). On univariate analysis, longer PACU LOS was associated with increased age (ρ = 0.106, p = 0.006), non-partnered status [mean difference (MD) = 0.019, p = 0.099], increased alcohol use (MD = 0.018, p = 0.102), increased Charlson Comorbidity Index (CCI) score (ρ = 0.065, p = 0.097), and ASA class ≥3 (MD = 0.033, p = 0.002). Using multivariate linear regression, increased age (R 2  = 0.0011, p = 0.043), non-partnered status (R 2  = 0.0389, p < 0.001), and ASA class ≥3 (R 2  = 0.0250, p = 0.023) were associated with increased PACU LOS., Conclusions: Identifying patients at risk for prolonged PACU LOS, including patients who are older, non-partnered, and have an ASA class ≥3, may allow for interventions to improve patient experience, better utilize hospital resources, decrease PACU overcrowding, and limit postoperative admissions and complications. The relationship between non-partnered status and PACU LOS is the most novel relationship identified in this study., Competing Interests: Declaration of competing interest The authors have no conflicts of interest to disclose., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Background: Pain and mood disturbances, such as anxiety and depression, are common symptoms in gynecologic cancer. Their associations and the role of personality traits in pain adaptation during chemotherapy remain unclear. This ancillary data analysis aimed to investigate these relationships., Aim: To (1) depict the temporal trend of daily pain severity; (2) evaluate dynamic associations between mood and pain; and (3) explore personality traits (neuroticism and conscientiousness) as moderators of the mood-pain relationship during chemotherapy for gynecologic cancer., Method: Symptom severity was assessed daily throughout chemotherapy, while personality, clinical, and demographic characteristics were assessed at baseline. Twenty-seven women with gynecologic cancer who completed daily symptom assessments for at least four cycles were included in the analyses., Results: Pain severity decreased slightly during chemotherapy. Multilevel modeling supported significant associations between pain and anxiety (b = 0.24, standard error [SE] = 0.06, p = .001) and depression (b = 0.30, SE = 0.08, p = .002). Time-varying effect modeling showed significant associations between anxiety and pain that initially increased and then decreased; and significant associations between depression and pain steadily decreased over the first four cycles of chemotherapy. Neuroticism moderated the association between anxiety and pain (b = 0.15, SE = 0.06, p < .05), with anxiety more strongly associated with pain in those with higher neuroticism., Conclusions: This study highlights the dynamic nature of pain and its associations with anxiety and depression in individuals with gynecologic cancer undergoing chemotherapy. The findings have implications for understanding pain and developing tailored psychosocial symptom management interventions to prevent pain during chemotherapy., Competing Interests: Declaration of Competing Interest The study sponsors had no involvement in the study design; the collection, analysis, and interpretation of data; in the writing of the manuscript; or in the decision to submit the manuscript for publication., (Copyright © 2023. Published by Elsevier Inc.)

Objective: To develop and psychometrically evaluate an adapted version of the Female Self-Advocacy in Cancer Survivorship (FSACS) Scale in men with a history of cancer., Methods: This psychometric instrument development and validation study used a two-phase approach to first adapt the FSACS Scale items to reflect the experience of men with a history of cancer and then evaluate the psychometric properties of the adapted scale compared to the original FSACS Scale. The study was conducted from December 2018 through April 2022 through cancer clinics, patient registries, and national advocacy organizations. We evaluated scale reliability and validity using reliability coefficients, exploratory and confirmatory factor analyses, and item analyses to determine a final set of scale items., Results: Item responses from N = 171 men with a history of cancer were evaluated to determine scale validity. After removing poor-performing items based on item-level analyses, factor analyses confirmed that a 3-factor structure of both the adapted and original FSACS Scale best fit the scale. The 10 new items did not outperform the original 20-item scale and were therefore excluded from the final scale. The final 20-item scale explained 87.94% of item variance and subscale's Cronbach α varied from 0.65 to 0.86., Conclusion: The SACS Scale can be used in research and clinical contexts to assess the propensity of men and women to get their needs, values, and priorities met in the face of a challenge., (© 2023 John Wiley & Sons Ltd.)

Abstract: BACKGROUND: Negative physical health results from the emotional stress of providing care to a family member with a primary malignant brain tumor; however, the downstream effects on caregivers' healthcare utilization (HCU) are unknown. This analysis examined associations between caregivers' emotional health and markers of HCU during the 6 months after patients' diagnoses. METHODS: Caregivers' self-report HCU data from a longitudinal study with 116 neuro-oncology caregivers were analyzed. Healthcare utilization was operationalized as number of prescription medications, reporting visits to primary care providers (PCPs), nature of PCP visit, number of comorbid conditions, and change in comorbid conditions. Potential predictors were caregivers' depressive symptoms (Center for Epidemiologic Studies-Depression Scale), hours providing care per day, mastery (Pearlin and Schooler), and burden (Caregiver Reaction Assessment). Logistic mixed effects modeling were used. RESULTS : Caregivers with higher levels of depressive symptoms ( P < .01), anxiety ( P = .02), burden related to schedule ( P = .02), and abandonment ( P < .01) were more likely to report worsening comorbid conditions. Those with higher mastery ( P = .02) were less likely to report worsening comorbid conditions. Caregivers who had a PCP visit and reported higher burden related to feelings of self-esteem ( P = .03) were more likely to report an illness-related visit. CONCLUSION : Findings suggest a relationship between neuro-oncology caregivers' emotional health and their HCU. Data highlight the importance of caregivers' PCPs identifying caregivers at risk for deteriorating health and increased HCU and intervene to ensure caregivers' self-care., Competing Interests: The authors declare no conflicts of interest., (Copyright © 2023 American Association of Neuroscience Nurses.)

Background: Survivors of critical illness experience high rates of serious health-related suffering. The delivery of palliative care may assist in decreasing this burden for survivors and their families. Objectives: To understand beliefs, attitudes, and experiences of post-intensive care unit (ICU) program clinicians regarding palliative care and explore barriers and facilitators to incorporating palliative care into critical illness survivorship care. Design: Qualitative inquiry using semistructured interviews and framework analysis. Results were mapped using the Consolidated Framework for Implementation Research. Setting/Subjects: We interviewed 29 international members (United States, United Kingdom, Canada) of the Critical and Acute Illness Recovery Organization post-ICU clinic collaborative. Results: All interprofessional clinicians described components of palliative care as essential to post-ICU clinic practice, including symptom management, patient/family support, facilitation of goal-concordant care, expectation management and anticipatory guidance, spiritual support, and discussion of future health care wishes and advance care planning. Facilitators promoting palliative care strategies were clinician level, including first-hand experience, perceived value, and a positive attitude regarding palliative care. Clinician-level barriers were reciprocals and included insufficient palliative care knowledge, lack of self-efficacy, and a perceived need to protect ICU survivors from interventions the clinician felt may adversely affect recovery or change the care trajectory. System-level barriers included time constraints, cost, and lack of specialty palliative care services. Conclusion: Palliative care may be an essential element of post-ICU clinic care. Implementation efforts focused on tailoring strategies to improve post-ICU program clinicians' palliative care knowledge and self-efficacy could be a key to enhanced care delivery for survivors of critical illness.

Background: Cancer clinicians and systems aim to provide patient-centered care, but not all patients have the self-advocacy skills necessary to ensure their care reflects their needs and priorities. This study examines the feasibility, acceptability, and preliminary efficacy of a self-advocacy serious game (an educational video game) intervention in women with advanced breast or gynecologic cancer., Methods: Women with recently diagnosed (<3 months) metastatic breast or advanced gynecologic cancer were randomized 2:1 to receive a tablet-based serious game (Strong Together) (n = 52) or enhanced care as usual (n = 26). Feasibility was based on recruitment, retention, data completion, and intervention engagement. Acceptability was assessed via a postintervention questionnaire and exit interview. Preliminary efficacy was assessed on the basis of change scores from baseline to 3 and 6 months in self-advocacy (Female Self-Advocacy in Cancer Survivorship Scale) using intention-to-treat analysis., Results: Seventy-eight women (55.1% with breast cancer; 44.9% with gynecologic cancer) were enrolled. Feasibility was demonstrated by satisfactory recruitment (69% approach-to-consent rate; 93% enroll-to-randomize rate), retention (90% and 86% at 3 and 6 months, respectively; 85% data completion), and intervention engagement (84% completed ≥75% of the game). Participants endorsed the intervention's (75%) and trial's (87%) acceptability. Participants in the intervention group experienced significant improvements in self-advocacy at 3 and 6 months compared to participants in the control group., Conclusions: Strong Together is feasible and acceptable among women with advanced breast or gynecologic cancer. This intervention demonstrates promising evidence of clinical efficacy. A future confirmatory trial is warranted to test the efficacy of the intervention for patient and health system outcomes., (© 2023 American Cancer Society.)

Objective: To examine the needs of adult survivors of critical illness through a lens of palliative care., Research Methodology: A qualitative study of adult survivors of critical illness using semi-structured interviews and framework analysis., Setting: Participants were recruited from the post-intensive care unit clinic of a mid-Atlantic academic medical center in the United States., Findings: Seventeen survivors of critical illness aged 34-80 (median, 66) participated in the study. The majority of patients were female (64.7 %, n = 11) with a median length of index ICU stay of 12 days (interquartile range [IQR] 8-19). Interviews were conducted February to March 2021 and occurred a median of 20 months following the index intensive care stay (range, 13-33 months). We identified six key themes which align with palliative care principles: 1) persistent symptom burden; 2) critical illness as a life-altering experience; 3) spiritual changes and significance; 4) interpreting/managing the survivor experience; 5) feelings of loss and burden; and 6) social support needs., Conclusion: Our findings suggest that palliative care components such as symptom management, goals of care discussions, care coordination, and spiritual and social support may assist in the assessment and treatment of survivors of critical illness., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Published by Elsevier Ltd.)

Background: Glioblastoma multiforme (GBM) is an aggressive brain tumor. Patients commonly rely on family caregivers for physical and emotional support. We previously demonstrated that caregiver mastery measured shortly after diagnosis was predictive of GBM patient survival, corrected for known predictors of survival (n = 88)., Objective: The aims of this study were to verify the contribution of caregiver mastery and investigate the added value of mastery over other predictors to predict 15-month survival., Methods: Data collected for a longitudinal study (NCT02058745) were used. Multivariable Cox regression analyses were performed for models with known clinical predictors (patient age, Karnofsky Performance Status, type of surgery, O6-methylguanine-DNA-methyltransferase promotor methylation status), with and without adding caregiver mastery to predict mortality. The added value of each model in discriminating between patients with the lowest and highest chances of survival at 15 months was investigated through Harrell's concordance index., Results: In total, 41 caregiver-patient dyads were included. When evaluating solely clinical predictors, Karnofsky Performance Status and patient age were significant predictors of mortality (hazard ratio [HR], 0.974; 95% confidence interval [CI], 0.949-1.000; and HR, 1.045; 95% CI, 1.002-1.091, respectively). Adding caregiver mastery, these clinical predictors remained statistically significant, and mastery showed an HR of 0.843 (95% CI, 0.755-0.940). The discriminative value improved from C = 0.641 (model with known clinical predictors) to C = 0.778 (model with mastery), indicating the latter is superior., Conclusions: We confirm that caregiver mastery is associated with GBM patient survival., Implications for Practice: Incorporating support and guidance for caregivers into standard care could lead to benefits for caregiver well-being and patient outcomes., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

Background: Women receiving chemotherapy for gynecologic cancer (GC) experience severe symptoms with associated functional changes. Understanding day-to-day symptom and function variation within and across chemotherapy treatment cycles could inform improved symptom management, but such studies are rare and may be infeasible in clinical care., Objective: The aim of this study was to evaluate feasibility and acceptability of daily symptom monitoring combined with objective and self-reported functional assessments every 21 days during active chemotherapy for GC., Methods: Thirty women enrolled in a prospective observational study during first-line chemotherapy completed a daily symptom and falls diary during their entire chemotherapy treatment period. Patient-reported outcomes and objective symptom and function testing were assessed before each chemotherapy appointment. Study outcomes included accrual and attrition rates, completion of study assessments, and qualitative perceptions of study participation., Results: Participants were 92% White, 60% had high school or higher education, 68% were married/partnered, and 62% had stage III or IV cancer at diagnosis. The study had an 83% accrual rate, 6.6% early withdrawal rate, and 17% total attrition rate. Missing assessments for prechemotherapy patient-reported outcomes and objective assessments ranged from 27% to 35% and 35% to 47% respectively, with a general decrease across cycles. Daily diary completion rate was 83% overall. Participants rated study participation positively., Conclusions: Intensive daily symptom and function monitoring was feasible and acceptable to GC patients and may provide a sense of symptom controllability., Implications for Practice: Daily symptom and function monitoring in research studies may provide patients with information to support symptom discussions with the clinical team. Future work should develop proactive symptom management interventions using personalized symptom trajectories., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2022 Wolters Kluwer Health, Inc. All rights reserved.)

Teaching patients with cancer the skill of self-advocacy shifts the focus of their cancer care onto what is important to them, leading to optimized patient-centered care. As oncology nurses, providing support to patients as they self-advocate to get their needs met fosters a collaborative relationship, creating an environment in which patients feel comfortable verbalizing their needs and concerns.

Purpose: GOG-259 was a 3-arm randomized controlled trial of two web-based symptom management interventions for patients with recurrent ovarian cancer. Primary aims were to compare the efficacy of the nurse-guided (Nurse-WRITE) and self-directed (SD-WRITE) interventions to Enhanced Usual Care (EUC) in improving symptoms (burden and controllability) and quality of life (QOL)., Methods: Patients with recurrent or persistent ovarian, fallopian, or primary peritoneal cancer with 3+ symptoms were eligible for the study. Participants completed baseline (BL) surveys (symptom burden and controllability and QOL) before random assignment. WRITE interventions lasted 8 weeks to develop symptom management plans for three target symptoms. All women received EUC: monthly online symptom assessment with provider reports; online resources; and every 2-week e-mails. Outcomes were evaluated at 8 and 12 weeks after BL. Repeated-measures modeling with linear contrasts evaluated group by time effects on symptom burden, controllability, and QOL, controlling for key covariates., Results: Participants (N = 497) reported mean age of 59.3 ± 9.2 years. At BL, 84% were receiving chemotherapy and reported a mean of 14.2 ± 4.9 concurrent symptoms, most commonly fatigue, constipation, and peripheral neuropathy. Symptom burden and QOL improved significantly over time ( P < .001) for all three groups. A group by time interaction ( P < .001) for symptom controllability was noted whereby both WRITE intervention groups had similar improvements from BL to 8 and 12 weeks, whereas EUC did not improve over time., Conclusion: Both WRITE Intervention groups showed significantly greater improvements in symptom controllability from BL to 8 and BL to 12 weeks compared with EUC. There were no significant differences between Nurse-WRITE and SD-WRITE. SD-WRITE has potential as a scalable intervention for a future implementation study., Competing Interests: Lari B. WenzelConsulting or Advisory Role: Array BioPharma Robert P. EdwardsResearch Funding: Merck Mary C. RobergeResearch Funding: Clovis Oncology (Inst) Teresa H. ThomasConsulting or Advisory Role: Healthline Media, Mashup Media David G. MutchConsulting or Advisory Role: Lilly Carolyn Y. MullerResearch Funding: AstraZeneca (Inst), Genmab (Inst), VBL Therapeutics (Inst), Roche/Genentech (Inst), TapImmune Inc (Inst), Linnaeus Therapeutics (Inst), Agenus (Inst), Incyte (Inst), Merck (Inst)Patents, Royalties, Other Intellectual Property: Have a pending patent on the cancer use for R-ketorolac—not yet its own new drug (Inst)Other Relationship: NCI, Department of DefenseNo other potential conflicts of interest were reported.

Objectives: Spiritual and social support may be key facilitators for critical illness recovery and are identified as high priority for research. Understanding the prevalence of spiritual and social support needs in critical illness survivors may guide development of targeted interventions for support, which, in turn, may improve critical illness survivor quality of life. To characterize unmet spiritual and social support needs in critical illness survivors approximately 1 month after hospital discharge and examine the association of these needs with postintensive care syndrome (PICS)-related symptom burden., Design: Retrospective, cross-sectional study., Setting: University-affiliated hospital in Pittsburgh, PA., Patients: One hundred ninety-six consecutive adult critical illness survivors seen during an initial post-ICU clinic visit from June 2018 to March 2020., Interventions: None., Measurements and Main Results: Patient-reported clinical outcome measures assessing spiritual and social support needs and PICS-related symptoms were extracted from the electronic health record. Patients had a median age of 61 (interquartile range [IQR], 51-68.5), and majority were male (55.1%) with a moderate comorbidity burden (Charlson comorbidity index median score, 3; IQR, 2-5). Social support and spiritual needs were prevalent. Of the 196 patients, over 50% reported unpreparedness/fearful for the future, half of patients reported not feeling in control of their care, and over one-third reported needing more support than their family, friends, or insurance can provide. Nearly 13% of respondents reported feeling abandoned or punished by God/not supported by their church/faith. Many patients reported overlapping PICS-related symptom domains (physical, psychologic, and cognitive). Univariate and multivariate analyses revealed associations between reported PICS-related symptoms and the presence of spiritual and social needs., Conclusions: Patients surviving critical illness experience significant social support and spiritual needs independent of commonly identified manifestations of PICS. These findings support the need for formal assessment and tailored interventions for social support and spiritual needs in critical illness survivors., Competing Interests: Dr. Eaton acknowledges fellowship support from the National Clinician Scholars Program. The remaining authors have disclosed that they do not have any potential conflicts of interest., (Copyright © 2022 The Authors. Published by Wolters Kluwer Health, Inc. on behalf of the Society of Critical Care Medicine.)

Purpose: Patients with primary malignant brain tumors have high symptom burden and commonly rely on family caregivers for practical and emotional support. This can lead to negative mental and physical consequences for caregivers. We investigated effectiveness of an 8-week nurse-led online needs-based support program (SmartCare © ) with and without online self-guided cognitive behavioral therapy (CBT) for depression compared to enhanced care as usual (ECAU) on depressive symptoms, caregiving-specific distress, anxiety, mastery, and burden., Methods: Family caregivers scoring ≥ 6 on a depressive symptoms inventory were randomized to three groups: ECAU plus self-guided CBT and SmartCare © ; ECAU plus SmartCare © ; ECAU only. Primary outcomes (depressive symptoms; caregiving-specific distress) and secondary outcomes (anxiety, caregiver mastery, and caregiver burden) were assessed online. Intention to treat (ITT) and per protocol (PP) analyses of covariance corrected for baseline scores were performed for outcomes at 4 months., Results: In total, 120 family caregivers participated. Accrual and CBT engagement were lower than expected, therefore intervention groups were combined (n = 80) and compared to ECAU (n = 40). For depressive symptoms, no statistically significant group differences were found. Caregiving-specific distress decreased in the intervention group compared with ECAU (ITT: p = 0.01, partial ɳ 2  = 0.08; PP: p = 0.02, partial ɳ 2  = 0.08). A trend towards improvement in mastery for the intervention group compared with ECAU was identified (ITT: p = 0.08, partial ɳ 2  = 0.04; PP: p = 0.07, partial ɳ 2  = 0.05)., Conclusions: SmartCare © , with or without self-guided CBT, reduced caregiving-specific distress with a trend towards improving mastery. SmartCare © has the potential to improve the lives of families coping with a brain tumor diagnosis., Trial Registration Number: NCT02058745; 10 February 2014., (© 2021. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Purpose: Caregivers of people with cancer represent a large, overburdened, and under-recognized part of the cancer care workforce. Research efforts to address the unmet needs of these caregivers are expanding with studies focused on caregivers' skill sets, physical and psychological health, and integration into healthcare delivery. As this field of research continues to expand, integrating caregivers' input is vital to studies to ensure that research aligns with their experiences., Methods: This is a focus group study of 15 cancer caregivers conducted during a cancer caregiving workshop at the University of Pittsburgh in February 2020. During the workshop, caregivers reviewed, critiqued, and proposed priorities to support caregivers of adults with cancer. We used a multistage consensus building approach to identify priority areas of research and clinical practice to address caregivers' experiences and needs. We used descriptive content analysis to summarize caregivers' priorities., Results: Caregiver-identified priorities included (1) training and information about cancer and treatment, (2) caregiver integration into the patient's healthcare delivery, (3) assistance with navigating the healthcare system, (4) focus on caregiver health and well-being, and (5) policy reform to address caregiver needs. We identified ways in which these priorities can inform cancer caregiving research and practice., Conclusion: These recommendations should be considered by researchers, clinicians, cancer center leadership, and policymakers interested in creating caregiver-focused research protocols, interventions, and support systems.

Researchers define self-advocacy as the ability of an individual with cancer to overcome challenges in getting their preferences, needs, and values met. While imperative in all health care settings, self-advocacy is especially important in cancer care. The goal of this article is to present a conceptual framework for self-advocacy in cancer. We review foundational studies in self-advocacy, define the elements of the conceptual framework, discuss underlying assumptions of the framework, and suggest future directions in this research area. This framework provides an empirical and conceptual basis for studies designed to understand and improve self-advocacy among women with cancer., (Copyright © 2020 Wolters Kluwer Health, Inc. All rights reserved.)

Purpose: A needs assessment of family caregivers (CGs) in our gynecologic oncology clinic found that 50% of CGs report nine or more distressing unmet needs, but only 19% of patients had a documented CG. We conducted an ASCO Quality Training Program project with the following aims: (1) to identify and document primary CGs for 85% of patients within two clinic visits of a gynecologic cancer diagnosis, and (2) assess the needs of and provide interventions to 75% of identified family CGs., Methods: Plan-Do-Study-Act (PDSA) methodology and tools endorsed by the ASCO Quality Training Program were used. An interprofessional team reviewed baseline data (ie, any mention of a family CG in the electronic health record visit note; CG distress survey), defined the problem and project aims, created process maps, and identified root causes of poor CG identification and documentation. Eight successive PDSA cycles were implemented between October 2018 and March 2019 to address identified root causes., Results: For aim 1, CG identification increased from 19% at baseline to 57% postimplementation, whereas for aim 2, assessment improved from 28% at baseline to 60% postimplementation. Results fell somewhat short of initial goals, but they represent an important initial improvement in care. The core team has begun additional PDSA cycles to improve CG identification rates and extend the momentum of the project., Conclusion: This project demonstrated that a CG assessment protocol can be implemented in a large, academic, gynecologic oncology clinic. Additional efforts to integrate CG identification, assessment, and intervention more fully within the clinic and electronic health record are under way.

Objective: Survivors of multiple primary cancers (MPC) are at increased risk for poor health outcomes compared with survivors of single cancers. Using an adapted psychobehavioral stress-response model, the study purpose was to identify pathways and individual risk factors associated with poor health outcomes in adults with MPC., Methods: Adult MPC survivors (N = 211) with first cancers (stages I-III) diagnosed within 1 to 10 years were recruited via tumor registry. Employing a cross-sectional design, established questionnaires were used to operationalize patient characteristics and theoretical constructs including perceived stress, psychological and behavioral responses, financial hardship, social role function, and physical health. Disease and treatment data were obtained via registry and medical records. Structural equation modeling (SEM) was performed to fit, test, and modify the hypothesized psychobehavioral model., Results: Following measurement model refinement, an SEM linking self-management behaviors, distress, financial hardship, and functional health demonstrated a good fit: χ 2 (200, N = 206) = 332.06, P < .01; Tucker-Lewis index (TLI) = .95, comparative fit index (CFI) = .96, standardized root mean residual (SRMR) = .06, root-mean-square error of approximation (RMSEA) = .06. Less use of self-management behaviors predicted higher distress which, in turn, predicted higher financial hardship; higher distress and financial hardship predicted poorer functional health. Several sociodemographic and personal factors predicted self-management behaviors and distress., Conclusions: The hypothesized stress-response model was partially supported. Data supported pathways among self-management behaviors, distress, financial hardship, and functional health. Self-management and distress may represent modifiable intervention targets for MPC survivors. High body mass index (BMI), less education, greater neuroticism, and lower social support were associated with less use of self-management behaviors and higher distress and should be further evaluated as potential markers of vulnerability., (© 2019 John Wiley & Sons, Ltd.)

Background and Purpose: The informal care demands of primary malignant brain tumor (PMBT) patients include unique issues associated with neurological and cognitive symptoms. Existing caregiver needs questionnaires do not include these disease-specific symptoms, which are particularly distressing. Therefore, we have developed the neuro-oncology Caregiver Needs Screen (CNS) and evaluated its psychometric properties., Methods: The 32-item instrument was developed based on PMBT caregiver interviews ( N = 109) and expert review. The CNS was tested along measures of depression, anxiety, burden, and mastery in 122 PMBT caregivers. Principal components analysis was used to examine item properties and internal structure. Internal consistency reliability and construct validity were assessed., Results: Six subscales were identified with internal consistency ranging between alpha = .653 and .857. Convergent validity was verified by moderate/high correlations between measures of caregiver well-being and CNS scale scores., Conclusions: Findings provide preliminary evidence of reliability and validity for the CNS. This instrument can be useful when assessing caregivers' needs for supportive care., (© Copyright 2019 Springer Publishing Company, LLC.)

Purpose: Family caregivers are instrumental to patients with gynecologic cancer and can be deeply affected by the demands of caregiving. Our aims were as follows: (1) increase awareness of unmet needs of caregivers and (2) identify and prioritize the unmet needs of caregivers and essential support services to be provided in gynecologic cancer centers., Methods: From July 2017 to June 2018, a 16-person steering committee and 40 stakeholders, including caregivers, patients, and clinicians, participated in a modified Delphi approach to generate, review, and prioritize a set of essential elements for caregiver support. Stakeholders prioritized caregiver needs and brainstormed, discussed, and prioritized essential support services to meet those needs, using three rounds of a consensus-building protocol. Basic descriptive statistics were performed to feed means and rankings back to stakeholders before each round., Results: The top three caregiver needs were as follows: (1) to obtain information about their loved one's cancer, (2) how to provide support and comfort to their loved one, and (3) how to maintain their own emotional health and well-being. Fifteen essential elements of support for caregivers of patients with gynecologic cancer were identified and ranged from elements currently attainable (eg, information on managing symptoms, skilled-care training, a point person to help navigate the system) to more aspirational elements (eg, integrative services to promote caregiver well-being)., Conclusion: To ensure comprehensive quality care, clinicians and health care providers should strive to provide caregivers with the identified essential elements of support. Health care settings should work to incorporate caregiver needs into cancer care delivery.

Objective: To define important aspects of survivorship care for the more than 1.2million survivors of gynecologic cancer currently living in the US., Data Sources: Research articles, reviews, position statements and white papers, and evidence-based guidelines., Conclusion: Survivorship care includes a coordinated plan of care, ongoing surveillance, health promotion support, and management of long-term and late effects of treatment., Implications for Nursing Practice: Nurses need to be aware of the current guidelines for post-treatment surveillance and health promotion recommendations for survivors of gynecologic cancers. Early identification of long-term and late effects of treatment followed by coordinated medical intervention and self-management education are essential to improve quality of life., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Objective: Evaluate the ability of an office-administered phenotypic frailty assessment to predict chemotherapy tolerance in older adult gynecologic oncology patients, and describe practice patterns for chemotherapy administration in this population., Methods: Prospective, single-institution cohort study of gynecologic oncology patients 65 or older initiating chemotherapy. Phenotypic frailty testing at an office visit encompassed components of two validated frailty assessments: Fried Score (physical testing and patient response) and FRAIL Scale (patient response only). Patients were followed through three cycles of neoadjuvant chemotherapy or six cycles of adjuvant chemotherapy. Standard statistics examined the relationship of frailty to chemotherapy regimen, ability to complete chemotherapy, and complications., Results: Eighty patients were included, 65% with ovarian and 34% with endometrial cancer. On average 57% of patients were fit, 32% intermediately frail, and 11% frail. 68% received adjuvant chemotherapy versus 32% neoadjuvant. The majority (81%) received IV chemotherapy on a 21-day cycle and 81% initially received a regimen consistent with standard-of-care chemotherapy (SOCC). Age was not associated with receiving SOCC, or tolerance or completion of chemotherapy. Frailty was associated with non-initiation of SOCC in all patients and inability to complete SOCC in adjuvant patients. Complications and regimen alterations were common but were not associated with frailty., Conclusions: There is a need to develop tools to help physicians predict chemotherapy tolerance among older adult gynecologic oncology patients in order to prevent both under- and over-treatment while minimizing morbidity. However, in this study phenotypic frailty assessment had limited predictive utility. Among adjuvant chemotherapy patients, frailty was associated with inability to complete SOCC and thus may be helpful in selecting patients appropriate for less aggressive chemotherapy regimens., (Copyright © 2018 Elsevier Inc. All rights reserved.)

Objective: Sexual health is important to quality of life; however, the sexual health of gynecologic cancer patients is infrequently and inadequately addressed. We sought to understand patient experiences and preferences for sexual health care to help inform strategies for improvement., Methods/materials: An anonymous, cross-sectional survey of outpatient gynecologic cancer patients at a large academic medical center was performed as part of a larger study examining patient and caregiver needs. The survey explored patient-provider discussions about sexuality across 3 domains (experiences, preferences, barriers) and 4 phases of cancer care (diagnosis, treatment, treatment completion, follow-up). Age, relationship status, sexual activity, and cancer type were recorded., Results: Mean age was 63 years. Most patients had ovarian cancer (38%) or endometrial cancer (32%). Thirty-seven percent received treatment within the last month, 55% were in a relationship, and 35% were sexuality active. Thirty-four percent reported sexuality as somewhat or very important, whereas 27% felt that it was somewhat or very important to discuss. Importance of sexuality was associated with age, relationship status, and sexual activity but not cancer type. Fifty-seven percent reported never discussing sexuality. Age was associated with sexuality discussions, whereas relationship status, sexual activity, and cancer type were not. The most common barrier to discussion was patient discomfort. Follow-up was identified as the best time for discussion. Sexuality was most often discussed with a physician or advanced practice provider and usually brought up by the provider., Conclusions: Demographic predictors of importance of sexuality to the patient are age, relationship status, and sexual activity. Providers primarily use age as a proxy for importance of sexuality; however, relationship status and sexual activity may represent additional ways to screen for patients interested in discussing sexual health. Patient discomfort with discussing sexuality is the primary barrier to sexual health discussions, and awareness of this is key to developing effective approaches to providing sexual health care.

Objectives: As gynecologic cancer care shifts to the outpatient setting, caregivers are instrumental in helping patients navigate the demands of the disease and treatment. Through social media, we aimed to understand the needs of caregivers of patients with gynecologic cancers and support services necessary to meet these needs., Methods: On January 10, 2018, a monthly Twitter discussion session was hosted by the GYNecologic Cancer Social Media community (handle @GYNCSM) using the hashtag #GYNCSM. Five topics regarding caregiver needs and support were discussed. Basic descriptive statistics, including means and frequencies of tweets, and a content analysis of the tweets were performed., Results: Forty-six participants posted a total of 471 tweets, with 1.725 million impressions. Four main themes of caregiver needs emerged, including accepting help from others, a need to care for themselves as caregivers, increased access to information and resources, and a need for the health care team to communicate with caregivers. Themes relating to barriers to obtaining support services included practical barriers, a lack of awareness, negative emotions, and a need to do it all themselves. Participants suggested that caregiver support programs include convenient resources, caregiver peer support programs, support for the "work" of caregiving, and support to improve the emotional and physical health of the caregiver., Conclusions: Experts, patients, and caregivers effectively engaged in social media to identify a wide range of needs of caregivers of women with gynecologic cancers. Further research is needed to identify specific support services that could meet the priority needs of a broader network of caregivers.

Aim: To develop and psychometrically test the validity of the Female Self-Advocacy in Cancer Survivorship Scale., Background: Female cancer survivors need to self-advocate to overcome challenges associated with cancer yet no valid measure of self-advocacy exists., Design: Instrument development. Mixed-mode cross-sectional survey design., Participants: We recruited adult females (18+ years; N = 317) with a history of invasive cancer from local and national tumour registries and advocacy organizations to complete online or paper questionnaires., Methods: Between July 2014 - March 2015 to evaluate the construct validity based on evidence of the scale's: (1) internal structure consistent with the underlying model of self-advocacy; (2) sensitivity to differences between groups known to differ in self-advocacy skills; (3) relationships between self-advocacy and key potential predictors (openness and conscientiousness; information engagement; social support) and outcomes (symptom burden and healthcare utilization); (4) relationships between self-advocacy and related concepts (patient activation; self-advocacy within another patient population); and (5) relationships between self-advocacy and criterion measures. Analyses included an exploratory factor analysis, t tests, and bivariate correlations using validated, reliable measures for constructs., Results: Evidence from all five hypotheses supported the construct validity of the Female Self-Advocacy in Cancer Survivorship Scale. The factor analysis confirmed the three underlying dimensions of self-advocacy resulting in a 20-item measure with strong internal consistency that explained almost half of response variance., Conclusion: The Female Self-Advocacy in Cancer Survivorship Scale is a valid, reliable measure of how well adult female cancer survivors can get their needs met in the face of adversity., (© 2017 John Wiley & Sons Ltd.)

Background: Although patient self-advocacy is a critical component of patient-centered care, the association between symptom burden and self-
advocacy has received little attention. 
., Objectives: This analysis evaluates the degree to which self-advocacy is associated with symptom burden among women with a history of cancer. 
., Methods: Participants completed online or paper questionnaires. Descriptive statistics and ordinary least squares regression models were used to analyze the association between the three dimensions of self-advocacy and two dimensions of symptom burden., Findings: Participants reported moderate levels of symptom burden. Fatigue, disturbed sleep, and memory problems were most common. Informed decision making was positively associated with symptom burden and participants' burden across the three most severe symptoms. Effective communication was negatively associated with total symptom burden and the degree to which symptoms interfered with daily life.

Objective: The incidence of multiple primary cancers (MPCs) is increasing, but little is known about psychological distress in this population. The purpose of this study is to review and synthesize the literature regarding what is known about psychological distress in adults who have experienced MPC diagnoses., Methods: All potentially eligible studies identified in PubMed and CINAHL were reviewed by 2 independent evaluators, and each relevant article was assessed for methodological quality. Data were extracted, organized, and recorded using a coding log, PRISMA flow diagram, and a standardized table of evidence. Effect size (ES) values were calculated using Cohen's d., Results: Five of the 562 potentially relevant articles were selected for final analysis. MPC survivors, when compared with single cancer survivors, had lower global quality of life (d = 0.32-0.37), poorer emotional role function and stress (d = 0.08-0.20), greater and more frequent distress (d = 0.11-0.37), and greater subclinical anxiety (d = 0.15). Depressive symptoms were variable (d = 0.01-0.22), and no differences between MPC and single cancer groups were identified for sleep and suicidal ideation., Conclusion: There is a substantial lack of evidence focused on psychological distress among the growing MPC survivor population. ES noted in the 5 studies reflect small but potentially significant increases in psychological distress in survivors of MPC compared with survivors of a single cancer. Clinicians should be aware of this at-risk population when screening for distress in cancer survivors. Suggestions for future research are provided., (Copyright © 2016 John Wiley & Sons, Ltd.)

Purpose/objectives: To evaluate whether survivorship of multiple primary cancers (MPCs) is associated with psychological distress, positive health behaviors, and benefit finding.
., Design: Secondary analysis of the 2010 Livestrong cross-sectional survey.
., Setting: Online survey.
., Sample: 238 MPC survivors and 3,295 single cancer survivors.
., Methods: Chi-square and t tests for group comparisons were used. Multivariate linear regression, adjusted for covariates, was used to determine associations between variables.
., Main Research Variables: MPC versus single cancer; psychological distress, health behavior (healthy lifestyle and positive healthcare utilization), and benefit-finding scores.
., Findings: Survivors of MPCs (compared to single cancer survivors) were significantly older, less likely to have a spouse or partner, further out from original cancer diagnosis, and less likely to be employed full-time, and they differed by cancer diagnoses and survivorship stage. Having MPCs was associated with significantly higher psychological distress and healthcare utilization but not healthy lifestyle or benefit finding.
., Conclusions: Relative to those with single cancers, MPC survivors are at increased risk for psychological distress and are more likely to receive recommended cancer screenings. Additional research is needed to understand mechanisms surrounding psychological distress in MPC survivors.
., Implications for Nursing: Targeted distress screening in MPC survivors may allow for early identification and interventions to ameliorate distress and reduce negative downstream health effects.

Crowdsourcing is "the practice of obtaining participants, services, ideas, or content by soliciting contributions from a large group of people, especially via the Internet." (Ranard et al. J. Gen. Intern. Med. 29:187, 2014) Although crowdsourcing has been adopted in healthcare research and its potential for analyzing large datasets and obtaining rapid feedback has recently been recognized, no systematic reviews of crowdsourcing in cancer research have been conducted. Therefore, we sought to identify applications of and explore potential uses for crowdsourcing in cancer research. We conducted a systematic review of articles published between January 2005 and June 2016 on crowdsourcing in cancer research, using PubMed, CINAHL, Scopus, PsychINFO, and Embase. Data from the 12 identified articles were summarized but not combined statistically. The studies addressed a range of cancers (e.g., breast, skin, gynecologic, colorectal, prostate). Eleven studies collected data on the Internet using web-based platforms; one recruited participants in a shopping mall using paper-and-pen data collection. Four studies used Amazon Mechanical Turk for recruiting and/or data collection. Study objectives comprised categorizing biopsy images (n = 6), assessing cancer knowledge (n = 3), refining a decision support system (n = 1), standardizing survivorship care-planning (n = 1), and designing a clinical trial (n = 1). Although one study demonstrated that "the wisdom of the crowd" (NCI Budget Fact Book, 2017) could not replace trained experts, five studies suggest that distributed human intelligence could approximate or support the work of trained experts. Despite limitations, crowdsourcing has the potential to improve the quality and speed of research while reducing costs. Longitudinal studies should confirm and refine these findings., (© 2017 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

Context: Researchers administering surveys seek to balance data quality, sources of error, and practical concerns when selecting an administration mode. Rarely are decisions about survey administration based on the background of study participants, although socio-demographic characteristics like age, education, and race may contribute to participants' (non)responses., Objectives: In this study, we describe differences in paper- and web-based surveys administered in a national cancer survivor study of women with a history of cancer to compare the ability of each survey administrative mode to provide quality, generalizable data., Methods: We compared paper- and web-based survey data by socio-demographic characteristics of respondents, missing data rates, scores on primary outcome measure, and administrative costs and time using descriptive statistics, tests of mean group differences, and linear regression., Results: Our findings indicate that more potentially vulnerable patients preferred paper questionnaires and that data quality, responses, and costs significantly varied by mode and participants' demographic information. We provide targeted suggestions for researchers conducting survey research to reduce survey error and increase generalizability of study results to the patient population of interest., Conclusion: Researchers must carefully weigh the pros and cons of survey administration modes to ensure a representative sample and high-quality data., (Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Primary brain tumors (PBTs) are rare but have a great impact on both patient and family caregiver wellbeing. Supporting caregivers can help them to continue their caregiving activities to maintain the patients' best possible level of quality of life. Efforts to improve PBT caregiver wellbeing should take into account country- or culture-specific differences in care issues and supportive care needs to serve larger caregiver groups. We aimed to explore PBT caregivers' satisfaction with the current supportive care provision, as well as their thoughts on monitoring their care issues with both paper-based and digital instruments. Twelve PBT caregivers were interviewed in the United States. The semi-structured interviews were transcribed verbatim and analyzed by two coders independently. Data were combined with those collected in the Netherlands, following similar methodology (N = 15). We found that PBT caregivers utilize both formal and informal support services, but that those who experience more care issues would prefer more support, particularly in the early disease phase. Keeping track of care issues was thought to provide more insight into unmet needs and help them find professional help, but it requires investment of time and takes discipline. Caregivers preferred a brief and easy-to-use 'blended care' instrument that combines digital monitoring with personal feedback. The present study shows that the preferences of family caregivers in neuro-oncology toward keeping track of care issues are likely not heavily influenced by country- or culture-specific differences. The development of any instrument thus has the potential to benefit a large group of family caregivers.

Background: Cancer-related fatigue (CRF) is one of the most common symptoms among women with recurrent ovarian cancer, yet it remains extremely difficult to manage. Symptom management typically requires patients to set goals and strategies to manage their CRF, but little is known about how to create individualized CRF symptom management goals and strategies., Objective: The aim of this study was to describe cancer patients' goals and strategies for managing CRF along with their process of individualizing both., Methods: This study is a qualitative analysis with supportive quantitative description of a Web-based symptom management randomized clinical trial, the WRITE (Written Representational Intervention to Ease) Symptoms study. Researchers conducted a content analysis on 47 participants' CRF symptom care plans to identify common themes in participants' goals, categorize strategies, and describe the individualization process., Results: Four general themes were identified among participants' CRF goals: (1) enjoying time with friends and family, (2) doing the things I enjoy, (3) having energy to be physically active, and (4) keeping up with what I need to do. Cancer-related fatigue strategies were categorized into 13 groups including conserving energy, increasing activity, and talking with healthcare providers. A multistep individualization process resulted in personally meaningful strategies., Conclusions: The process by which participants individualized their CRF strategies consisted of identifying, confirming, testing, and evaluating different CRF strategies and resulted in refined, specific, and individualized strategies intended to eventually ensure participants achieve their goal., Implications for Practice: Clinicians can assist patients in individualizing their CRF goals and strategies. Individualization of CRF goals and strategies assists patients in visualizing how improving CRF will impact their life.

Background: Glioblastoma multiforme (GBM) is associated with a poor prognosis, and patients rely heavily on family caregivers for physical and emotional support. The capability and mental health of family caregivers may influence their ability to provide care and affect patient outcomes. The objective of the current study was to investigate whether caregivers' anxiety, depressive symptoms, burden, and mastery influenced survival in a sample of patients newly diagnosed with GBM., Methods: Baseline data from caregiver-patient dyads participating in a longitudinal study funded by the National Institutes of Health were used. Cox regression analyses were performed to determine whether caregiver anxiety (Profile of Mood States-Anxiety), depressive symptoms (Center for Epidemiologic Studies-Depression Scale), burden (Caregiver Reaction Assessment), and feelings of mastery (Mastery Scale) predicted the survival time of patients with GBM after controlling for known covariates (patient age, Karnofsky performance status, type of surgery, and postsurgical treatment)., Results: A total of 88 caregiver-patient dyads were included. The median overall survival for the sample was 14.5 months (range, 0-88 months). After controlling for covariates, caregiver mastery was found to be predictive of patient survival. With each unit increase in mastery, there was a 16.1% risk reduction in patient death (95% confidence interval, 0.771-0.913; P<.001)., Conclusions: To the authors' knowledge, the results of the current study are among the first to explore the impact of family caregiving on the outcomes of patients with GBM. If these results are supported in other studies, providing neuro-oncology caregivers with more structured support and guidance in clinical practice has the potential to improve caregivers' feelings of mastery, thereby influencing patients' well-being for the better. Cancer 2017;123:832-40. © 2016 American Cancer Society., (© 2016 American Cancer Society.)

Illness representations are cognitive structures that individuals rely on to understand and explain their illnesses and associated symptoms. The Representational Approach (RA) to patient education offers a theoretically based, clinically useful model that can support oncology nurses to develop a shared understanding of patients' illness representations to collaboratively develop highly personalized plans for symptom management and other important self-management behaviors. This article discusses theoretical underpinnings, practical applications, challenges, and future directions for incorporating illness representations and the RA in clinical and research endeavors.

Objective: We sought to compare symptoms identified as a priority by patients with recurrent ovarian cancer to symptoms most frequently documented by their clinicians, and examine the association between clinician documentation of symptoms and subsequent clinical intervention., Methods: Single-institution, retrospective chart review of patients enrolled in WRITE Symptoms Study (GOG 259), a randomized controlled trial of internet-based recurrent ovarian cancer symptom management. As part of the trial, women completed the Symptom Representation Questionnaire for 28 symptoms and selected 3 priority symptoms (PS). We compared patient-reported PS to clinician documentation of symptoms and interventions over the time period corresponding to study enrollment., Results: At least one PS was documented in 92% of patients. Of 150 PS reported by patients, 53% were never documented by clinicians; these symptoms tended to be less directly related to disease or treatment status. Symptoms not identified by patients as PS were frequently documented by clinicians; these symptoms tended to relate to physiologic effects of disease and treatment toxicity. 58% of patients had at least one PS intervention. PS intervened for were documented at 2.58 visits vs 0.50 visits for PS not receiving intervention (p≤0.0001)., Conclusions: Discordance was identified between symptoms reported by patients as important and symptoms documented by clinicians. Symptoms more frequently documented were also more frequently intervened for. Our study illustrates the need to improve identification of symptoms important to patients, and suggests that improving communication between patients and clinicians could increase intervention rates to enhance quality of life in women with recurrent ovarian cancer., Competing Interests: Statement The remaining authors listed on this manuscript have no conflicts of interest to disclose., (Copyright © 2016 Elsevier Inc. All rights reserved.)

Purpose: Nausea is a common and potentially serious effect of cytotoxic chemotherapy for recurrent ovarian cancer and may function as a sentinel symptom reflecting adverse effects on the gut-brain axis (GBA) more generally, but research is scant. As a first exploratory test of this GBA hypothesis, we compared women reporting nausea to women not reporting nausea with regard to the severity of other commonly reported symptoms in this patient population., Methods: A secondary analysis of data systematically collected from women in active chemotherapy treatment for recurrent ovarian cancer (n = 158) was conducted. The Symptom Representation Questionnaire (SRQ) provided severity ratings for 22 common symptoms related to cancer and chemotherapy. Independent sample t tests and regression analyses were used to compare women with and without nausea with regard to their experience of other symptoms., Results: Nausea was reported by 89 (56.2 %) women. Symptoms that were significantly associated with nausea in bivariate and regression analyses included abdominal bloating, bowel disturbances, dizziness, depression, drowsiness, fatigue, headache, lack of appetite, memory problems, mood swings, shortness of breath, pain, sleep disturbance, urinary problems, vomiting, and weight loss. Symptoms that were not associated with nausea included hair loss, numbness and tingling, sexuality concerns, and weight gain., Conclusions: Nausea experienced during chemotherapy for recurrent ovarian cancer may be an indicator of broader effects on the gut-brain axis. A better understanding of the mechanisms underlying these effects could lead to the development of novel supportive therapies to increase the tolerability and effectiveness of cancer treatment.

Prolonged periods of family caregiving can induce stress levels that may negatively influence caregiver health. However, the physiologic effect of psychological distress in oncology family caregivers has received little attention. Therefore we aimed to determine longitudinal profiles of inflammatory cytokines (IL-6 and IL-1ra) in neuro-oncology caregivers and identify associations between psychological distress and cytokine levels. Depressive symptoms, anxiety, caregiver burden and blood were collected from 108 adult caregivers at adult patients' diagnosis, 4-, 8-, and 12-months. Trajectory analyses of log transformed cytokine levels were performed. Multiple logistic regression analyses evaluated the impact of psychological distress on cytokine levels. For both cytokines, two distinct populations were identified, neither of which changed over time. High IL-1ra was associated with male caregivers with anxiety (OR = 1.7; 95 %CI 1.06-2.83) and obese caregivers (BMI = 40) who felt burdened due to disrupted schedules (OR = 1.3; 95 %CI 1.02-1.77). Conversely, caregivers with a healthy weight (BMI = 25) who felt burdened due to disrupted schedules were less likely to have high IL-1ra (OR = 0.71; 95 %CI 0.54-0.92). Caregivers ≤30 years old with lower self-esteem from caregiving were 1.16 times (95 %CI 1.04-1.30) more likely to have high IL-6. Analysis demonstrated groups of family caregivers with high and low levels of systemic inflammation and these levels did not change longitudinally over the care trajectory. Poor physical health in family caregivers may have a negative impact on the burden placed on the healthcare system in general and on the well-being of neuro-oncology patients in particular.