Search

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. mHealth apps could fill this gap and facilitate communication between patient-caregiver dyads. OBJECTIVE To obtain information on desired usage and features to be used to design an mHealth self-management support app targeting dyads. METHODS We conducted Zoom focus groups with women who had been treated for gynecologic cancers (ovarian, fallopian, primary peritoneal, uterine, endometrial, cervical, vulvar) and their self-identified closest support person. A semi-structured interview guide informed by the Consolidated Framework for Implementation Research (CFIR) was used to elicit information on intervention characteristics, outer setting, inner setting, characteristics of individuals, and processes relevant to app design and implementation. After transcription, rapid qualitative analysis using a thematic matrix was used to identify common themes across groups. RESULTS The final sample included 41 individuals with gynecologic cancer and 22 support persons/caregivers (total n=63). Patients were aged between 32-84 years old, and most (94%) were white and married. For caregivers, 15 individuals identified as male and 7 as female, with ages ranging between 19 and 81 years old. Almost 60% of CGs were spouses. Seven themes emerged related to our three topic areas: 1) Gaps in Information & Support: i) Finding relevant information is time-consuming and emotionally draining; ii) Caregivers and patients lack confidence in determining when, how, and from whom to obtain assistance with new or concerning problems; 2) Desired features of mhealth app: Caregivers and patients desire iii) centralized, trustworthy information; iv) timely recommendations tailored to specific personal and cancer related needs; v) opportunities to interact with clinical and peer experts through the app; 3) Interest and preferences for app usage: Caregivers and patients were interested in the app, but expressed needs to vi) have private space in the app for each member of the dyad; and vii) have control over sharing of information with other family members. CONCLUSIONS Designing a single mHealth app to be used by both members of the cancer dyad presents unique challenges for intervention designers and app developers. Results of the present study highlight the need for flexibility in app functionality and sharing information between members of the dyad. CLINICALTRIAL Not applicable.

Teaching patients with cancer the skill of self-advocacy shifts the focus of their cancer care on what is important to them, leading to optimized patient-centered care. As oncology nurses, providing support to our 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. This article provides oncology nurses with background knowledge of self-advocacy; key ways in which they can support patients in self-advocating; and a case study to provide contextual understanding of how and why nurses can promote patient self-advocacy.

Background Online health communities (OHCs) can be a source for clinicians to learn the needs of cancer patients and caregivers. Ovarian cancer (OvCa) patients and caregivers deal with a wide range of unmet needs, many of which are expressed in OHCs. An automated need classification model could help clinicians more easily understand and prioritize information available in the OHCs. Objective The aim of this study was to use initial OHC postings to develop an automated model for the classification of OvCa patient and caregiver needs. Methods We collected data from the OvCa OHC and analyzed the initial postings of patients and caregivers (n = 853). Two annotators coded each posting with 12 types of needs. Then, we applied the machine learning approach with bag-of-words features to build a model to classify needs. F1 score, an indicator of model accuracy, was used to evaluate the model. Results The most reported needs were information, social, psychological/emotional, and physical. Thirty-nine percent of postings described information and social needs in the same posting. Our model reported a high level of accuracy for classifying those top needs. Psychological terms were important for classifying psychological/emotional and social needs. Medical terms were important for physical and information needs. Conclusions We demonstrate the potential of using OHCs to supplement traditional needs assessment. Further research would incorporate additional information (eg, trajectory, stage) for more sophisticated models. Implications for practice This study shows the potential of automated classification to leverage OHCs for needs assessment. Our approach can be applied to different types of cancer and enhanced by using domain-specific information.

Background and Objectives The coronavirus disease 2019 (COVID-19) pandemic has negatively affected persons with existing chronic health conditions. The pandemic also has the potential to exacerbate the stresses of family caregiving. We compare family caregivers with noncaregivers on physical, psychosocial, and financial well-being outcomes during the pandemic and determine family caregivers most at risk for adverse outcomes. Research Design and Methods We conducted a cross-sectional online survey of 576 family caregivers and 2,933 noncaregivers from April to May 2020 in Pittsburgh, PA region with a national supplement. Outcome measures included concurrent anxiety, depression, fatigue, sleep disturbance, social participation, and financial well-being and perceived changes due to COVID-19 (loneliness, financial well-being, food security). We also measured sociodemographic, caregiving contextual variables, and COVID-19-related caregiver stressors (COVID Caregiver Risk Index). Results Controlling for sociodemographics, family caregivers reported higher anxiety, depression, fatigue, sleep disturbance, lower social participation, lower financial well-being, increased food insecurity (all p < .01), and increased financial worries (p = .01). Caregivers who reported more COVID-19-related caregiver stressors and disruptions reported more adverse outcomes (all p < .01). In addition, caregivers who were female, younger, lower income, providing both personal/medical care, and providing care for cognitive/behavioral/emotional problems reported more adverse outcomes. Discussion and Implications Challenges of caregiving are exacerbated by the COVID-19 pandemic. Family caregivers reported increased duties, burdens, and resulting adverse health, psychosocial, and financial outcomes. Results were generally consistent with caregiver stress–health process models. Family caregivers should receive increased support during this serious public health crisis.

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.

To examine the needs of adult survivors of critical illness through a lens of palliative care.A qualitative study of adult survivors of critical illness using semi-structured interviews and framework analysis.Participants were recruited from the post-intensive care unit clinic of a mid-Atlantic academic medical center in the United States.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.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.

Purpose\ud \ud 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.\ud \ud \ud \ud Methods\ud \ud 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.\ud \ud \ud \ud Results\ud \ud 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 ɳ2 = 0.08; PP: p = 0.02, partial ɳ2 = 0.08). A trend towards improvement in mastery for the intervention group compared with ECAU was identified (ITT: p = 0.08, partial ɳ2 = 0.04; PP: p = 0.07, partial ɳ2 = 0.05).\ud \ud \ud \ud Conclusions\ud \ud 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.\ud \ud \ud \ud Trial registration number\ud \ud NCT02058745; 10 February 2014

Background \ud \ud 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).\ud \ud \ud \ud Objective \ud \ud 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.\ud \ud \ud \ud Methods \ud \ud 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.\ud \ud \ud \ud Results \ud \ud 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.\ud \ud \ud \ud Conclusions \ud \ud We confirm that caregiver mastery is associated with GBM patient survival.\ud \ud \ud \ud Implications for Practice \ud \ud Incorporating support and guidance for caregivers into standard care could lead to benefits for caregiver well-being and patient outcomes.

BACKGROUND 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. MATERIAL AND METHODS Family caregivers with depressive symptoms were randomized to three groups: SmartCare© plus/minus self-guided CBT, or ECAU. Primary outcomes (depressive symptoms (CES-D); caregiving-specific distress (Caregiver Needs Screen)) and secondary outcomes (anxiety (POMS-A), caregiver mastery (Caregiver Mastery Scale), and caregiver burden (Caregiver Reactions Assessment)) were assessed online. Intention to treat analyses of covariance corrected for baseline scores were performed for outcomes at four 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 (p=0.01, partial ɳ 2=0.08). Among secondary outcomes, there was a trend towards improvement in mastery for the intervention group compared with ECAU (p=0.08, partial ɳ 2=0.04). CONCLUSION 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.

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: χ2 (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.

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.

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 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.

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 (SmartCareFamily caregivers scoring ≥ 6 on a depressive symptoms inventory were randomized to three groups: ECAU plus self-guided CBT and SmartCareIn 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 ɳSmartCareNCT02058745; 10 February 2014.

Gynecologic cancer, which includes cancers of the ovary, endometrium, uterus, cervix, vagina, and vulva and trophoblastic disease, is the third most common cancer and the third leading cause of cancer deaths among women in the United States. Gynecologic cancer and treatment lead to a wide range of physical, psychological, and social challenges. Disparities based on race/ethnicity, socioeconomic status, and healthcare access are also prevalent for cervical cancer. Impairments in reproductive and sexual function are some of the most distressing consequences of gynecologic cancers. There is some evidence to support the use of psychological interventions, psycho-education to promote self-management of psychological and physical symptoms, sexuality counseling, and social support interventions.

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.

Background Ovarian cancer (OvCa) patients suffer from symptoms that severely affect quality of life. To optimally manage these symptoms, their symptom experiences must be better understood. Social media have emerged as a data source to understand these experiences. Objective The objective of this study was to use topic modeling (ie, latent Dirichlet allocation [LDA]) to understand the symptom experience of OvCa patients through analysis of online forum posts from OvCa patients and their caregivers. Interventions/methods Ovarian cancer patient/caregiver posts (n = 50 626) were collected from an online OvCa forum. We developed a symptom dictionary to identify symptoms described therein, selected the top 5 most frequently discussed symptoms, extracted posts that mentioned at least one of those symptoms, and conducted LDA on those extracted posts. Results Pain, nausea, anxiety, fatigue, and skin rash were the top 5 most frequently discussed symptoms (n = 4536, 1296, 967, 878, and 657, respectively). Using LDA, we identified 11 topic categories, which differed across symptoms. For example, chemotherapy-related adverse effects likely reflected fatigue, nausea, and rash; social and spiritual support likely reflected anxiety; and diagnosis and treatment often reflected pain. Conclusion The frequency of a symptom discussed on a social media platform may not include all symptom experience and their severity. Indeed, users, who are experiencing different symptoms, mentioned different topics on the forum. Subsequent studies should consider the influence of additional factors (eg, cancer stage) from discussions. Implications for practice Social media have the potential to prioritize and answer the questions about clinical care that are frequently asked by cancer patients and their caregivers.

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.

ObjectiveSexual 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/MaterialsAn 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.ResultsMean 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.ConclusionsDemographic 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.

ObjectivesAs 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.MethodsOn 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.ResultsForty-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.ConclusionsExperts, 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.

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.

BACKGROUND 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 with depressive symptoms were randomized to three groups: SmartCare© plus/minus self-guided CBT, or ECAU. Primary outcomes (depressive symptoms (CES-D); caregiving-specific distress (Caregiver Needs Screen)) and secondary outcomes (anxiety (POMS-A), caregiver mastery (Caregiver Mastery Scale), and caregiver burden (Caregiver Reactions Assessment)) were assessed online. Intention to treat analyses of covariance corrected for baseline scores were performed for outcomes at four 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 (p=0.01, partial ɳ 2=0.08). Among secondary outcomes, there was a trend towards improvement in mastery for the intervention group compared with ECAU (p=0.08, partial ɳ 2=0.04). CONCLUSION 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.

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.

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.

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.

Chemotherapy for gynecologic (GYN) cancer leads to high symptom burden and low quality of life. Pain is common, distressing, and often co-occurs with mood symptoms (e.g. anxiety, depression). Traditional analytical methods assume a constant effect of mood on pain, even for longitudinal data. Little evidence has examined the dynamic, daily relationship between anxiety/depression and pain during chemotherapy. Thus, we aimed to examine dynamic associations between daily pain and mood during 4 cycles of chemotherapy for CYN cancer. In this secondary analysis, daily self-reported symptoms were collected for 84 days (21 days/cycle * 4 cycles) during a longitudinal study of symptoms in GYN cancer treatment. Women (N=24, M age=60.5 years) initiating outpatient chemotherapy for newly diagnosed GYN cancer rated the severity of multiple symptoms (including anxiety, depression and pain) at their worst in the past 24 hours on a validated 0 to 10 scale. We used the time-varying effect model (TVEM) to examine daily associations between mood and pain over time. The nonparametric trajectory of pain was decreasing over time, with a significant association between daily anxiety and pain from day 2 through day 80 (from day 1 to day 84, regression coefficient of anxiety range [CoR-anxiety]=0.23-0.66). The magnitude of association was stable until day 70 before decreasing. There was also a significant association between daily depression and pain until day 58 (CoR-depression=0.43-1.21), with a steady decrease in the magnitude of association over time. TVEM identified patterns of association between mood and pain that varied in magnitude over chemotherapy. Overall, the influence of anxiety/depression on pain decreased with more cycles of chemotherapy, which may suggest adaptation of pain intensity. These dynamic associations can advance understanding of relationships between mood and physical symptoms and provide insight into the everyday challenges faced by women undergoing chemotherapy for GYN cancer. A Pilot Study of Falls and Near Falls in Women with Ovarian Cancer Receiving Neurotoxic Chemotherapy. Funding: Rehabilitation Nursing Foundation. No grant number since this is a private foundation.

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.

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

Most cancer care occurs within infusion rooms at ambulatory cancer centers, which are staffed by RNs administering chemotherapies and other cancer care medications. Many patients receiving these therapies have basic palliative care needs that could be addressed by the RNs. However, the extent to which these RNs spend their time on basic, or "primary," palliative care is unknown.The aim of this project was to conduct a work sampling assessment of infusion room RNs' work activities and provision of primary palliative care.A single observer conducted direct observation work sampling at three academic cancer center infusion rooms. Nursing tasks were recorded via freehand text and later assigned an appropriate task code.Observed infusion room RNs spent about 1% of their time on direct care palliative care tasks, primarily symptom assessment. The remainder of their time was divided among direct (28%) and indirect (56%) nonpalliative care activities, unit-related activities (7%), and personal time (9%). Infusion room RNs spent less than a third of their time on administering direct patient care and very minimal time on performing palliative care activities.

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.

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.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.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.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.

Background and Purpose: Self-advocacy is well appreciated but poorly defined concept in oncology. Methods: The development of the Female Self-Advocacy in Cancer Survivorship (FSACS) Scale’s theoretical underpinnings and item development led to evaluations of the measure’s content validity and reliability. Results: The construct of self-advocacy contains 3 subdimensions with 57 Likert-type self-report items. Content validity results (S-CVI = 0.81 and S-CVI/UA = 0.83) indicated strong relevancy of items. Reliability results for each of the 3 subdimensions supported the consistency of the FSACS Scale scores, with strong internal consistency (Cronbach’s alphas = .88, .81, and .90) and test–retest reliability (PPMC r = .85, .97, and .88). Conclusions: The FSACS Scale captures the construct of self-advocacy, and its scores show strong reliability.

IntroductionIntraperitoneal (IP) chemotherapy improves survival in ovarian cancer but its use has been limited by toxicity with cisplatin-based regimens. The primary objective of this study was to define the maximum tolerated dose and dose-limiting toxicity of intravenous (IV) oxaliplatin and IP docetaxel in women with recurrent ovarian, fallopian tube or peritoneal cancer. Secondary objectives were response rate, time to progression, symptom interference with quality of life, and pharmacokinetics.MethodsPatients received a constant dose of oxaliplatin 75 mg/m2IV on day 1 and docetaxel escalating from 50 mg/m2IP on day 2 every 3 weeks using a 3 + 3 design. Treatment continued until disease progression, remission, or intolerable toxicity occurred. Plasma and IP samples were taken to determine drug concentrations. Patients completed the MD Anderson Symptom Inventory weekly.ResultsTwelve patients were included. The median number of cycles was 4 (range 2–6) with a median time to progression of 4.5 months. Among eight patients with measurable disease, the best responses were partial response in two patients, stable disease in five, and progressive disease in one. A total of 14 grade 3–4 toxicities were noted, most commonly hematologic. Four patients, all dose level 3, had six dose-limiting toxicities: two with prolonged neutropenia, one with infection, one with hyponatremia, and two with abdominal pain. Dose level 3 was therefore considered intolerable. The mean±SD ratio of docetaxel area under the curve (AUC) in IP fluid to AUC in plasma was 229±111. Symptom interference with life activities steadily decreased from cycle 1 to 5.ConclusionsOxaliplatin 75 mg/m2IV on day 1 and docetaxel 75 mg/m2IP on day 2 was the maximum tolerated dose. Most patients had partial response or stable disease, even in a heavily pre-treated population. At this dose level, patient-reported outcomes demonstrate temporary but tolerable decrements in quality of life.

Objective The primary objective was to define the maximum tolerated dose (MTD) and dose-limiting toxicity (DLT) of IV docetaxel and IP oxaliplatin in women with recurrent ovarian (OV), fallopian tube (FT) or peritoneal (PP) cancer. Secondary objectives included response rate, time to progression, pharmacokinetics (PK) and quality of life (QoL). Methods Patients received docetaxel 75mg/m 2 IV day (d) 1 and oxaliplatin escalating from 50mg/m 2 IP d2 every 3weeks using a 3+3 design. Treatment continued until disease progression, remission, or intolerable toxicity. Plasma and IP samples were taken to determine drug concentrations. MD Anderson Symptom Inventory and symptom interference scale were completed weekly. Results Thirteen patients were included. Median number of cycles was 6 (range 1–10). Ten patients had measureable disease. Best response was partial response (PR-2), stable disease (SD-7), and progressive disease (PD-1). Twenty-one Grades 3–4 toxicities were noted, commonly hematologic. Two patients had DLTs: prolonged neutropenia (1) and abdominal pain (1). MTD was d1 docetaxel 75mg/m 2 IV and d2 oxaliplatin 50mg/m 2 IP. Symptom burden peaked week one and returned to baseline by week two of each cycle on dose level 1. Dose level 2 had persistently high symptom burden and interference. At IP oxaliplatin doses of 50mg/m 2 , total unbound drug exposure (AUC) averaged 8 times larger and C max reached concentrations 50-fold greater in IP fluid compared to plasma. Conclusions Docetaxel 75mg/m 2 IV d1 and oxaliplatin 50mg/m 2 IP d2 is the MTD. Most patients had PR or SD. Patient-reported outcomes demonstrate temporary but tolerable decrements in QoL. IP oxaliplatin provides PK advantages over IV administration.

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.

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.

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.

Adjuvant endocrine therapy (AET) utilization is linked to improved clinical outcomes among breast cancer survivors (BCS); yet, AET adherence rates remain suboptimal. Little is known about provider perspectives regarding barriers and facilitators to AET-related symptom management (SM). In this study, we examined provider perspectives on the barriers and facilitators to AET-related SM among BCS and opportunities for improvement. We conducted three focus groups (FGs) with a multidisciplinary group of healthcare providers (n = 13) experienced in caring for BCS undergoing AET. We utilized semi-structured discussion guides to elicit provider perspectives on AET-related SM. FGs were audiotaped, transcribed, and analyzed using qualitative software to identify key themes. Providers described patient-, provider-, and system-level barriers and facilitators to AET-related SM. At the patient-level, barriers included competing demands, limited time/resources, and possible misattribution of some symptoms to AET, while family/social relationships and insurance emerged as important facilitators. Discomfort with SM, limited time, and challenges distinguishing AET-related symptoms from other conditions were key provider-level barriers. Provider-level facilitators included routine symptom documentation and strong provider relationships. Care fragmentation and complexity of the cancer care delivery system were described as system-level barriers; however, survivor clinics were endorsed by providers. Provider perspectives on AET-related SM can shed light on SM barriers and facilitators spanning multiple levels of the cancer care delivery system. Strategies for improving AET-related SM in BCS include increasing patients’ knowledge and engagement in SM, equipping providers with efficient SM strategies, and improving coordination of symptom-related services through survivorship programs.

Purpose/objectives To describe and compare survivors' and providers' views of the uses of and perceived benefits and drawbacks of survivor self-advocacy. Design A cross-sectional, two-group, mixed-methods survey. Setting Survivors were recruited from local and national registries and advocacy organizations. Providers were recruited from the University of Pittsburgh Medical Center Cancer Center and a regional Oncology Nursing Society chapter. Sample 122 female cancer survivors and 39 providers involved in their direct care. Methods Quantitative survey data were summarized using descriptive statistics, including means and frequencies. Qualitative survey data were collected and analyzed using content analysis techniques, and main themes were counted and summarized. Main research variables Perceptions of the uses, benefits, and drawbacks of female cancer survivor self-advocacy. Findings Survivors and providers perceived similar but distinct uses of self-advocacy. Survivors and providers generally agreed on the potential benefits of self-advocacy but had different views of the potential drawbacks. Survivors were most concerned with finding and making sense of information, that their questions would not be answered, and having a worse relationship with their provider; providers were concerned with increases in clinic time and difficulties developing treatment plans. Conclusions Although survivors and providers recognized similar benefits to survivor self-advocacy, they had different views of the uses and drawbacks of female cancer survivor self-advocacy. Implications for nursing Attempts to increase self-advocacy among female cancer survivors must address survivors’ and providers’ views and apprehensions about self-advocacy.

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.

BackgroundThe aim of chemotherapy in patients with platinum resistant ovarian cancer is palliation. Patients’ experience of symptoms is not well documented, and the impact of treatment on symptoms has not been evaluated in clinical trials. We report symptom burden and treatment outcomes from stage 1 of the Gynecological Cancer Intergroup (GCIG) Symptom Benefit Study.MethodsOne hundred twenty-six patients receiving palliative chemotherapy completed 5 validated health-related quality-of-life questionnaires before starting treatment and before each cycle. They also reported their expected and perceived benefits from treatment. Physicians documented the reasons for treatment and adverse events including symptoms at baseline and estimated the number of cycles of treatment that patients would receive.ResultsPalliation was the major reason for chemotherapy. At baseline, all patients were symptomatic (almost 70% had ≥9 symptoms). Patients had high expectation of benefit from treatment. Only 41% of patients received the predicted number of cycles with most stopping early (≤2 cycles) due to progression, death, or adverse effects. Treatment was associated with significant toxicity, with discordance between patient report and physician grading. Although RECIST response rates were low (8.5%), 40% of the patients were reported to have had a clinical benefit and almost 50% of symptomatic patients also reported symptom improvement.ConclusionsPatients had a complex array of symptoms and significant symptom burden, which was commonly the reason for treatment. Although chemotherapy improved symptoms in about half of the patients, many did not benefit and progressed rapidly. Our findings support research into the use of patient reported outcome measures to document symptoms, adverse events, and subjective benefit, both in clinical trials and in clinical practice, in this patient population. Our findings highlight the need to develop prognostic models to better select patients for treatment, and this is an aim of stage 2 of the GCIG Symptom Benefit Study.

ObjectiveThe aim of this study was to determine the optimal patient-reported outcome measure (PROM) for assessing symptom benefit in trials of palliative chemotherapy for women with symptomatic ovarian cancer.MethodsCandidate PROMs were EORTC QLQ-C30 plus ovarian-specific QLQ-OV28, Functional Assessment of Cancer Therapy-Ovarian (FACT-O), FACT Ovarian Symptom Index (FOSI), and gynecologic cancer-specific Symptom Representation Questionnaire. Predefined optimality criteria were inclusion of all symptoms necessary for the specified purpose, recall period covering typical length of palliative chemotherapy, numerical item rating scales, and all necessary symptoms included in a single symptom index. Qualitative and quantitative methods were applied to data from stage 1 of the Gynecologic Cancer Intergroup Symptom Benefit Study to determine the set of necessary symptoms and to objectively assess candidate PROMs against the optimality criteria.ResultsTen necessary symptoms were identified: pain, fatigue, abdominal bloating/discomfort, sleep disturbance, bowel disturbance, nausea and vomiting, shortness of breath, poor appetite, urinary symptoms, and weight changes. Although QLQ-C30 and QLQ-OV28 together cover all these symptoms, they split them into numerous scales, dissipating potential symptom-benefit signal. Conversely, FACT-O does not cover all necessary symptoms and contains many other HRQoL-related items and treatment side effects, diluting potential symptom-benefit signal when summed into scales. Item response scales and composite scoring of all candidate PROMs were suboptimal to our specific purpose. We therefore developed a new PROM, the Measure of Ovarian Symptoms and Treatment (MOST) concerns, to provide optimal measurement for the specified purpose.ConclusionsThis article documents the development of the MOST, a new PROM designed to assess patient-reported benefits and burden as end points in clinical trials of palliative chemotherapy for women with symptomatic ovarian cancer. The validity, reliability, and statistical efficiency of the MOST, relative to the best candidate scales of existing PROMs, will be assessed in the stage 2 of Gynecologic Cancer Intergroup Symptom Benefit Study.

Context Little research has focused on symptom management among women with ovarian cancer. Written Representational Intervention To Ease Symptoms (WRITE Symptoms) is an educational intervention delivered through asynchronous web-based message boards between a study participant and a nurse. Objectives We evaluated WRITE Symptoms for 1) feasibility of conducting the study via message boards, 2) system usability, 3) participant satisfaction, and 4) initial efficacy. Methods Participants were 65 women (mean age, 56.5; SD = 9.23) with recurrent ovarian cancer randomized using minimization with race/ethnicity (non-Hispanic white vs. minority) as the stratification factor. Measures were obtained at baseline and two and six weeks after intervention. Outcomes were feasibility of conducting the study, system usability, participant satisfaction, and efficacy (symptom severity, distress, consequences, and controllability). Results Fifty-six (87.5%) participants were retained, and the mean usability score (range 1–7) was 6.18 (SD = 1.29). All satisfaction items were scored at 5 (of 7) or higher. There were significant between-group effects at T2 for symptom distress, with those in the WRITE Symptoms group reporting lower distress than those in the control group [t(88.4) = −2.57; P = 0.012], with a similar trend for symptom severity [t(40.4) = −1.95; P = 0.058]. Repeated measures analysis also supported a group effect, with those in the WRITE Symptoms group reporting lower symptom distress than those in the control condition [F(1, 56.7) = 4.59; P = 0.037]. Conclusion Participants found the intervention and assessment system easy to use and had high levels of satisfaction. Initial efficacy was supported by decreases in symptom severity and distress.