Self-report of symptom cluster experiences in cancer patient-caregiver dyads.

PURPOSE: Symptom clusters have important health implications in the context of cancer, but the symptom cluster experiences of cancer caregivers and patient-caregiver dyads are not well studied. To date, most studies report statistically derived symptom clusters among patients and fail to consider the caregivers' experience. This study aimed to assess and characterize self-reported symptom cluster experiences in cancer patient-caregiver dyads. METHODS: We recruited 30 patient-caregiver dyads from the outpatient oncology clinics at a Comprehensive Cancer Center in the Midwestern U.S. Participants completed web-based surveys reporting their symptom clusters at weekly intervals over 8 weeks of cancer treatment. RESULTS: Among 48 eligible dyads, 30 (63%) agreed to participate, 29 provided data, and ≥ 80% (24 patients, 26 caregivers) completed the study. Twenty-eight patients (97%) and twenty-two caregivers (76%) reported experiencing symptoms in clusters. There was substantial variability in the symptoms reported, perceived causality, and directional relationships among symptoms, however both patients' and caregivers' frequently described symptom clusters with psychoneurologic components (co-occurring pain, fatigue, sleep disturbance, anxiety, depression, lack of appetite and/or cognitive disturbance). Symptom clusters were perceived to have a moderate impact on patients' daily lives and a mild-to-moderate impact on caregivers' daily lives. CONCLUSION: Dyad members experienced and successfully self-reported symptom clusters, with psychoneurologic symptom clusters prevalent among both patients and their caregivers. Self-report of symptom cluster experiences provides unique insight relevant to clinical management. Findings provide foundational support for development and testing of dyad-based interventions to mitigate symptom clusters and their negative impact on daily life among cancer-patient caregiver dyads.

"There is no expiration date": a qualitative analysis using the Social Cognitive Theory to identify factors influencing physical activity among adults living with advanced cancer.

PURPOSE: To identify cognitive, behavioral, environmental, and other factors that influence physical activity in adults with advanced cancer using qualitative, semi-structured interviews. METHODS: Eighteen semi-structured interviews were conducted with adults living with stage IV breast, prostate, or colorectal cancer; or multiple myeloma recruited from the University of Wisconsin Carbone Cancer Center. We used the Social Cognitive Theory to design the interview guide and a reflexive thematic approach for analysis. RESULTS: Participants were 62 years old on average and currently receiving treatment. Despite reporting numerous barriers to physical activity, most participants discussed engaging in some physical activity. Participants reported difficulties coping with changes in physical functioning especially due to fatigue, weakness, neuropathy, and pain. While cold weather was seen as a deterrent for activity, access to sidewalks was a commonly reported feature of neighborhood conduciveness for physical activity. Regardless of current activity levels, adults with advanced cancer were interested in engaging in activities to meet their goals of gaining strength and maintaining independence. Having a conversation with a provider from their cancer care team about physical activity was seen as encouraging for pursuing some activity. CONCLUSIONS: Adults living with advanced cancer are interested in pursuing activity to gain strength and maintain independence despite reported barriers to physical activity. To ensure patients are encouraged to be active, accessible resources, targeted referrals, and interventions designed to address their goals are critical next steps. RELEVANCE: Integrating conversations about physical activity into oncology care for adults living with advanced cancer is an important next step to encourage patients to remain active and help them improve strength and maintain quality of life and independence.

The role of spirituality in symptom experiences among adults with cancer.

PURPOSE: Adults with cancer experience symptoms such as pain, fatigue, depression, and sleep disturbance, which can impede quality of life. Research suggests that addressing spirituality may be one route to support holistic symptom management. The purpose of this study is to explore how spirituality relates to common cancer-related symptoms (including severity, distress, and interference) among a sample of adults with cancer. METHODS: This is a secondary analysis of data from N = 200 solid tumor cancer patients undergoing chemotherapy. Symptom experiences were assessed with a modified version of the Memorial Symptom Assessment Scale and the M. D. Anderson Symptom Inventory-Interference Subscale. Spirituality was assessed using a subset of items from the Fox Simple Quality of Life Scale. A series of ordinal and linear regressions were used to examine the relationship between spirituality and symptom severity, symptom-related distress, and symptom interference across four cancer-related symptoms (pain, fatigue, depression, and sleep disturbance). RESULTS: Higher spirituality trended toward an association with lower pain severity, although results were not significant (p < .058). Higher spirituality was significantly associated with lower severity of fatigue (p < .003), depression (p < .006), and sleep disturbance (p < .004). Spirituality was not significantly associated with any of the four symptom-related distress outcomes. Higher spirituality was significantly associated with lower overall symptom interference (p < .004). DISCUSSION: This study highlights the role of spirituality in the experience of cancer-related symptoms. Additional research is needed among more diverse samples of people with cancer. This foundational work could lead to the development of symptom management interventions that incorporate aspects of spirituality.

Biopsychosocial characteristics associated with engagement in art making among older adults.

In order to design patient-centered art making interventions for health and well-being, investigators need to understand the population of interest regarding their relationship to engagement in art making activities. This study, therefore, aimed to examine older adults' characteristics that were associated with engagement in art making activities, and to provide practical examples of how to use the identified characteristics. We conducted correlation analyses to evaluate such associations, using cross-sectional survey data from the 2014 Health and Retirement Study (n=731). Female sex, higher education, personality traits, positive attitude toward the arts, and a larger social network size were positively associated with engagement in art making activities (p<.05). Males and those with lower education could be targeted, while the type of art making activity could be tailored based on personality traits for patient-centered art making interventions. Future studies can use this information to empirically study art making interventions for older adults.

Systematic Review and Meta-analysis of Psychosocial Uncertainty Management Interventions.

BACKGROUND: Psychosocial uncertainty management interventions (UMIs) targeting patients and their family members might help to alleviate the negative influences of illness-related uncertainty, such as diminished quality of life and poor adjustment. OBJECTIVES: The aims of this study were to evaluate the key characteristics of psychosocial UMIs and assess intervention effects on patients' and their family members' short-term and long-term illness-related uncertainty. METHODS: We conducted a systematic review and meta-analysis of psychosocial UMIs published through 2017. We performed a comprehensive electronic search and manual review. The outcome indicator was illness-related uncertainty experienced by patients or their family members. RESULTS: We included 29 studies in the systematic review and 14 studies in the meta-analysis. The main intervention components were information and resource provision, coping skills training, social and emotional support, communication skills, symptom management and self-care, coordination of care, and exercise. Compared to usual care, patients who received UMIs reported less uncertainty immediately after intervention delivery (g = -0.44, 95% confidence interval [CI] [-0.71, -0.16]) and at later follow-up points (g = -0.47, 95% CI [-0.91, -0.03]). Family members who received UMIs also reported less uncertainty immediately after intervention delivery (g = -0.20, 95% CI [-0.33, -0.06]) and at later follow-up points (g = -0.20, 95% CI [-0.36, -0.04]). DISCUSSION: Psychosocial UMIs had small to medium beneficial effects for both patients and their family members. Questions remain regarding what intervention components, modes of delivery, or dosages influence effect size. More rigorously designed randomized controlled trials are needed to validate intervention effects on patients' and family members' uncertainty management.

Barriers to Goal-concordant Care for Older Patients With Acute Surgical Illness: Communication Patterns Extrinsic to Decision Aids.

OBJECTIVE: We sought to characterize patterns of communication extrinsic to a decision aid that may impede goal-concordant care. BACKGROUND: Decision aids are designed to facilitate difficult clinical decisions by providing better treatment information. However, these interventions may not be sufficient to effectively reveal patient values and promote preference-aligned decisions for seriously ill, older adults. METHODS: We conducted a secondary analysis of 31 decision-making conversations between surgeons and frail, older inpatients with acute surgical problems at a single tertiary care hospital. Conversations occurred before and after surgeons were trained to use a decision aid. We used directed qualitative content analysis to characterize patterns within 3 communication elements: disclosure of prognosis, elicitation of patient preferences, and integration of preferences into a treatment recommendation. RESULTS: First, surgeons missed an opportunity to break bad news. By focusing on the acute surgical problem and need to make a treatment decision, surgeons failed to expose the life-limiting nature of the patient's illness. Second, surgeons asked patients to express preference for a specific treatment without gaining knowledge about the patient's priorities or exploring how patients might value specific health states or disabilities. Third, many surgeons struggled to integrate patients' goals and values to make a treatment recommendation. Instead, they presented options and noted, "It's your decision." CONCLUSIONS: A decision aid alone may be insufficient to facilitate a decision that is truly shared. Attention to elements beyond provision of treatment information has the potential to improve communication and promote goal-concordant care for seriously ill older patients.

Randomized controlled trial of a brief cognitive-behavioral strategies intervention for the pain, fatigue, and sleep disturbance symptom cluster in advanced cancer.

OBJECTIVE: Patients receiving treatment for advanced cancer suffer significant symptom burden, including co-occurring pain, fatigue, and sleep disturbance. There is limited evidence for effective interventions targeting this common symptom cluster. METHODS: A randomized controlled trial of a brief cognitive-behavioral strategies (CBS) intervention was conducted. A sample of 164 patients with advanced cancer receiving chemotherapy practiced imagery, relaxation, and distraction exercises or listened to cancer education recordings (attention-control) to manage co-occurring pain, fatigue, and sleep disturbance over a 9-week period. Symptom cluster severity, distress, and interference with daily life were measured at baseline and 3, 6, and 9 weeks. We also evaluated the moderating influence of imaging ability and number of concurrent symptoms, and mediating effects of changes in stress, anxiety, outcome expectancy, and perceived control over symptoms. RESULTS: Compared with the cancer education condition, participants receiving the CBS intervention reported less symptom cluster distress at week 6 (M = 1.82 vs 2.15 on a 0-4 scale, P < .05). No other group differences were statistically significant. The number of concurrent symptoms moderated the intervention effect on symptom cluster interference. Changes in stress, outcome expectancy, and perceived control mediated the extent of intervention effects on symptom outcomes, primarily at weeks 6 and 9. CONCLUSIONS: The brief CBS intervention had limited effects in this trial. However, findings regarding potential mediators affirm hypothesized mechanisms and provide insight into ways to strengthen future interventions to reduce the suffering associated with co-occurring pain, fatigue, and sleep disturbance.

A Systematic Review of Relaxation, Meditation, and Guided Imagery Strategies for Symptom Management in Heart Failure.

BACKGROUND: Pain, dyspnea, fatigue, and sleep disturbance are prevalent and distressing symptoms in persons with advanced heart failure. Although many lifestyle and self-care interventions have been developed to control heart failure progression, very few studies have explored treatments exclusively for symptom palliation. Cognitive-behavioral strategies may be effective treatment for these symptoms in advanced heart failure. OBJECTIVE: A systemic review was conducted to describe the effect of cognitive-behavioral strategies on pain, dyspnea, fatigue, and sleep disturbance in patients with heart failure. METHODS: CINAHL, Medline, and PsychINFO were searched from inception through December 2014. Articles were selected for inclusion if they tested a cognitive-behavioral strategy using a quasi-experimental or experimental design, involved a sample of adults with heart failure, and measured pain, dyspnea, fatigue, sleep disturbance, or symptom-related quality of life. The 2 authors evaluated study quality, abstracted data elements from each study, and synthesized findings. RESULTS: Thirteen articles describing 9 unique studies met criteria and were included in the review. Five studies tested relaxation strategies, 3 tested meditation strategies, and 1 tested a guided imagery strategy. Of the 9 studies, 7 demonstrated some improvement in symptom outcomes. Relaxation, meditation, guided imagery, or combinations of these strategies resulted in less dyspnea and better sleep compared with attention control or usual care conditions and reduced pain, dyspnea, fatigue, and sleep disturbance within treatment groups (pretreatment to posttreatment). Symptom-related quality of life was improved with meditation compared with attention control and usual care conditions and improved pre- to post-guided imagery. CONCLUSIONS: Studies exploring cognitive-behavioral symptom management strategies in heart failure vary in quality and report mixed findings but indicate potential beneficial effects of relaxation, meditation, and guided imagery on heart failure-related symptoms. Future research should test cognitive-behavioral strategies in rigorously designed efficacy trials, using samples selected for their symptom experience, and measure pain, dyspnea, fatigue, and sleep disturbance outcomes with targeted symptom measures.

Beliefs About Dysmenorrhea and Their Relationship to Self-Management.

Dysmenorrhea is highly prevalent and is the leading cause of work and school absences among women of reproductive age. However, self-management of dysmenorrhea is not well understood in the US, and little evidence is available on factors that influence dysmenorrhea self-management. Guided by the Common Sense Model, we examined women's representations of dysmenorrhea (beliefs about causes, symptoms, consequences, timeline, controllability, coherence, and emotional responses), described their dysmenorrhea self-management behaviors, and investigated the relationship between representations and self-management behaviors. We conducted a cross-sectional, web-based survey of 762 adult women who had dysmenorrhea symptoms in the last six months. Participants had varied beliefs about the causes of their dysmenorrhea symptoms, which were perceived as a normal part of life. Dysmenorrhea symptoms were reported as moderately severe, with consequences that moderately affected daily life. Women believed they understood their symptoms moderately well and perceived them as moderately controllable but them to continue through menopause. Most women did not seek professional care but rather used a variety of pharmacologic and complementary health approaches. Care-seeking and use of self-management strategies were associated with common sense beliefs about dysmenorrhea cause, consequences, timeline, and controllability. The findings may inform development and testing of self-management interventions that address dysmenorrhea representations and facilitate evidence-based management. © 2016 Wiley Periodicals, Inc.

A Systematic Review of the Characteristics and Effects of Physical Activity Interventions on Physical Activity Engagement, Long-Term and Late Effects, and Quality of Life in Adolescent and Young Adult Cancer Survivors.

Physical activity (PA) may minimize long-term and late effects experienced by cancer survivors. However, the efficacy of PA interventions in increasing PA engagement among adolescent and young adult (AYA) cancer survivors diagnosed between 15 and 39 is not well understood. This systematic review aimed to examine the effects of moderate- to high-intensity or strength training PA interventions on PA engagement in AYA cancer survivors. Secondary aims included describing intervention components unique to efficacious interventions, identifying symptom management in PA interventions, and evaluating intervention effects on quality of life (QoL), and long-term or late effects of cancer. We searched PubMed, CINAHL, PsycINFO, SportDiscus, Cochrane Library, and Scopus databases from inception to August 2022 and identified 12 articles, including 8 randomized controlled trials and 4 quasi-experimental studies. The effect of PA interventions on PA engagement was mixed, with four studies reporting increases in PA engagement ranging from 18.4 to 113.8 min/week postintervention. There was great diversity in PA intervention components. Motivational interviewing, supervised and unsupervised PA sessions together, moderate-intensity PA only, and mindful meditation were components unique to efficacious interventions. No intervention incorporated symptom management components. Studies provided some evidence of PA interventions on potential long-term effects of cancer, with positive impact on fatigue, and some evidence of improved anxiety, sleep, and QoL. Given limited research with AYA cancer survivors, additional research is needed to identify effective intervention components, integrate symptom management strategies into PA interventions, and track effects of PA interventions on late and long-term effects of cancer in this population.

Common patient-reported sources of cancer-related distress in adults with cancer: A systematic review.

BACKGROUND: Cancer-related distress (CRD) is widely experienced by people with cancer and is associated with poor outcomes. CRD screening is a recommended practice; however, CRD remains under-treated due to limited resources targeting unique sources (problems) contributing to CRD. Understanding which sources of CRD are most commonly reported will allow allocation of resources including equipping healthcare providers for intervention. METHODS: We conducted a systematic review to describe the frequency of patient-reported sources of CRD and to identify relationships with CRD severity, demographics, and clinical characteristics. We included empirical studies that screened adults with cancer using the NCCN or similar problem list. Most and least common sources of CRD were identified using weighted proportions computed across studies. Relationships between sources of CRD and CRD severity, demographics, and clinical characteristics were summarized narratively. RESULTS: Forty-eight studies were included. The most frequent sources of CRD were worry (55%), fatigue (54%), fears (45%), sadness (44%), pain (41%), and sleep disturbance (40%). Having enough food (0%), substance abuse (3%), childbearing ability (5%), fevers (5%), and spiritual concerns (5%) were infrequently reported. Sources of CRD were related to CRD severity, sex, age, race, marital status, income, education, rurality, treatment type, cancer grade, performance status, and timing of screening. CONCLUSIONS: Sources of CRD were most frequently emotional and physical, and resources should be targeted to these sources. Relationships between sources of CRD and demographic and clinical variables may suggest profiles of patient subgroups that share similar sources of CRD. Further investigation is necessary to direct intervention development and testing.

A Midwest Stakeholder Evaluation of an Adolescent and Young Adult Cancer Survivor Needs Assessment Survey.

Purpose: Over 87,000 adolescents and young adults (AYAs) are diagnosed with cancer in the United States each year. Improvement in outcomes in the AYA population has lagged that of both younger and older patients. This decrement may be attributable to several factors, including insufficient supportive care services. Our team modified the Needs Assessment & Service Bridge (NA-SB) tool, utilizing an iterative approach with patient and clinician stakeholders to meet the needs of the AYA population at a large Midwestern Cancer Center. Methods: We recruited a 10-member AYA Advisory Board (AB) from our Cancer Center patients, and met five times over 9 months to discuss supportive care and the NA-SB. We recruited a multidisciplinary group of oncology clinicians to assess content validity and conducted interviews with nine clinician stakeholders to discuss implementation. Results: The AB generated a 59-item-modified NA-SB, retaining most of the original NA-SB items and adding several more. Five items with concerns for relevance and/or clarity were revised to create the final 58-item-modified NA-SB. Priorities for implementation were identified by AB and clinician stakeholders. Conclusions: The modified NA-SB thoroughly reflects supportive care needs of our Midwestern AYA cancer survivors. When implemented, the tool may facilitate patient-care team communication and provide data to prioritize development of new supportive care resources. AYA cancer survivors have unique supportive care needs that are insufficiently addressed by current care models; using the modified NA-SB may help address those needs, leading to improved AYA outcomes.

Exploring Inflammation and Stress as Biological Correlates of Symptoms in Children With Advanced Cancer: A Longitudinal Feasibility Study.

Background: Few studies have examined biomarkers of stress and inflammation as underlying mechanisms of symptoms in adolescents and young adults with cancer. This study determined the feasibility of collecting blood and saliva samples across time, described the range and distribution of biomarkers, and explored the association of biomarkers with symptom adverse events (AEs). Method: This longitudinal, prospective repeated-measures single-site feasibility study recruited N = 10 children (M = 12.5 years) receiving treatment for advanced cancer. Symptom AE data and inflammation (cytokines and C-reactive protein) and physiologic response to stress (salivary cortisol and salivary alpha-amylase) biomarker levels were collected at three time points. Descriptive statistics were used to examine feasibility and acceptability and to summarize symptom AE, stress, and inflammatory biomarker data. A linear regression model was used to determine cortisol diurnal slopes. The relationship between symptom and inflammatory biomarker data was explored and Hedges's g statistic was used to determine its effect size. Results: Participants provided 83% of saliva samples (n = 199/240) and 185 samples were sufficient to be analyzed. Nurses collected 97% (n = 29/30) of blood samples. Participants reported the saliva collection instructions, kits, and reminders were clear and helpful. Insomnia, pain, fatigue, and anxiety demonstrated the most medium and large negative effects with inflammatory markers. Symptom AEs demonstrated the highest number of medium and large negative effects with interleukin-8 and tumor necrosis factor-alpha (-0.53 to -2.00). Discussion: The results indicate longitudinal concurrent collection of symptom and biomarker data is feasible and inflammatory and stress biomarkers merit consideration for inclusion in future studies.

Embedding an Education Intervention about Shared Decision Making into an RCT: Ensuring competency and fidelity.

Objective: To describe the outcomes of training nephrology clinicians and clinical research participants, to use the Best Case/Worst Case Communication intervention, for discussions about dialysis initiation for patients with life-limiting illness, during a randomized clinical trial to ensure competency, fidelity to the intervention, and adherence to study protocols and the intervention throughout the trial. Methods: We enrolled 68 nephrologists at ten study sites and randomized them to receive training or wait-list control. We collected copies of completed graphic aids (component of the intervention), used with study-enrolled patients, to measure fidelity and adherence. Results: We trained 34 of 36 nephrologists to competence and 27 completed the entire program. We received 60 graphic aids for study-enrolled patients for a 73% return rate in the intervention arm. The intervention fidelity score for the graphic aid reflected completion of all elements throughout the study. Conclusion: We successfully taught the Best Case/Worst Case Communication intervention to clinicians as research participants within a randomized clinical trial. Innovation: Decisions about dialysis are an opportunity to discuss prognosis and uncertainty in relation to consideration of prolonged life supporting therapy. Our study reveals a strategy to evaluate adherence to a communication intervention in real time during a clinical study.

Cancer-Related Symptom Frameworks Using a Biopsychosocial-Spiritual Perspective: A Scoping Review.

BACKGROUND: Research to understand and manage cancer-related symptoms continues to advance, yet work that more fully adopts a biopsychosocial-spiritual view of symptoms is needed. OBJECTIVE: The purpose of this article is to review existing frameworks that have the potential to guide research on cancer-related symptoms, to explore the characteristics of each framework, and to appraise each using a biopsychosocial-spiritual lens. METHODS: A scoping review was conducted to identify available frameworks that could be applied to guide cancer-related symptom research and to assess their characteristics. Research questions and criteria were formulated at the outset, followed by identifying relevant publications detailing novel frameworks, charting data, and collating results. Upon identification of available frameworks, each was appraised for alignment with a standard definition of "biopsychosocial-spiritual." RESULTS: Eleven frameworks were identified to guide cancer-related symptom research. All were developed in the United States, led by nurse scientists, including symptom experiences as well as their antecedents and outcomes, and could be applied to one or more concurrent cancer-related symptoms. While all 11 frameworks included biopsychosocial dimensions, only 4 included spirituality. CONCLUSIONS: Four biopsychosocial-spiritual frameworks offer unique insight to support advancement of cancer-related symptom research and practice from a holistic perspective. This foundational work could lead to development and validation of new frameworks and modification of existing frameworks to more closely align with a biopsychosocial-spiritual view of cancer-related symptoms. This review offers a starting point to carefully and explicitly adopt frameworks in research and practice with increased emphasis on considering spiritual dimensions of symptoms.

Change in alcohol consumption during the Covid-19 pandemic and associations with mental health and financial hardship: results from a survey of Wisconsin patients with cancer.

PURPOSE: Alcohol consumption increases health risks for patients with cancer. The Covid-19 pandemic may have affected drinking habits for these individuals. We surveyed patients with cancer to examine whether changes in drinking habits were related to mental health or financial effects of the pandemic. METHODS: From October 2020 to April 2021, adult patients (age 18-80 years at diagnosis) treated for cancer in southcentral Wisconsin were invited to complete a survey. Age-adjusted percentages for history of anxiety or depression, emotional distress, and financial impacts of Covid-19 overall and by change in alcohol consumption (non-drinker, stable, decreased, or increased) were obtained via logistic regression. RESULTS: In total, 1,875 patients were included in the analysis (median age 64, range 19-87 years), including 9% who increased and 23% who decreased drinking. Compared to stable drinkers (32% of sample), a higher proportion of participants who increased drinking alcohol also reported anxiety or depression (45% vs. 26%), moderate to severe emotional distress (61% vs. 37%) and viewing Covid-19 as a threat to their community (67% vs. 55%). Decreased (vs. stable) drinking was associated with higher prevalence of depression or anxiety diagnosis, emotional distress, and negative financial impacts of the pandemic. Compared to non-drinkers (36% of sample), participants who increased drinking were more likely to report emotional distress (61% vs. 48%). CONCLUSIONS: Patients with cancer from Wisconsin who changed their alcohol consumption during the Covid-19 pandemic were more likely to report poor mental health including anxiety, depression, and emotional distress than persons whose alcohol consumption was stable. IMPLICATIONS FOR CANCER SURVIVORS: Clinicians working with cancer survivors should be aware of the link between poor mental health and increased alcohol consumption and be prepared to offer guidance or referrals to counseling, as needed.

A systematic review of sexual concerns reported by gynecological cancer survivors.

OBJECTIVE: To identify physical, psychological and social sexual concerns reported by gynecological (GYN) cancer survivors. METHODS: A systematic review of the literature was conducted using CINAHL, PubMed and PsycInfo databases. Reference lists from articles provided additional relevant literature. Only research articles from peer-reviewed journals were included. A total of 37 articles were located; 34 explored women's sexual concerns following gynecological cancer diagnosis and treatment and 3 tested interventions for sexual concerns in women with gynecological cancer. RESULTS: Sexual concerns were identified across all dimensions of sexuality. Common concerns in the physical dimension were dyspareunia, changes in the vagina, and decreased sexual activity. In the psychological dimension, common concerns were decreased libido, alterations in body image, and anxiety related to sexual performance. And in the social dimension, common concerns were difficulty maintaining previous sexual roles, emotional distancing from the partner, and perceived change in the partner's level of sexual interest. Of the three psychoeducational intervention studies, two reported improvements in physical aspects of sexual function, and one reported improved knowledge, but without resolution of sexual concerns. CONCLUSION: Gynecological cancer survivors experience a broad range of sexual concerns after diagnosis and treatment, but the majority of studies emphasized physical aspects of sexuality, and may not adequately represent women's psychological and social sexual concerns. Health care providers should remain mindful of psychological and social sexual concerns when caring for gynecologic cancer survivors. Future research should systematically evaluate the full range of sexual concerns in large, representative samples of GYN cancer survivors and develop and test interventions to address those concerns.

Characteristics of Cancer Symptom Clusters Reported through a Patient-Centered Symptom Cluster Assessment.

In the scope of symptom cluster research, few investigators have obtained patients' perceptions of their symptom clusters, even though this information is central to designing effective interventions. In this cross-sectional study, 38 adults with cancer completed measures of demographics, health outcomes (functional status, well-being, quality of life) and a symptom cluster assessment that captured symptom occurrence, severity, distress, clustering, a priority cluster, causal attributions, duration, directional relationships, and cluster interference with daily life. Participants described 72 distinct symptom clusters. Symptoms were most frequently attributed to the cancer diagnosis. Participants' priority symptom cluster typically included two symptoms of continuous duration and one intermittent symptom. Temporal order and direction of symptom relationships varied, with 75 different relationships described among symptom pairs. Greater symptom cluster burden and interference were related to poorer health outcomes. This patient-centered view of symptom clusters revealed substantial variability in symptom cluster characteristics with important implications for symptom management.

Best Case/Worst Case: protocol for a multisite randomised clinical trial of a scenario planning intervention for patients with kidney failure.

INTRODUCTION: Given the burdens of treatment and poor prognosis, older adults with kidney failure would benefit from improved decision making and palliative care to clarify goals, address symptoms, and reduce unwanted procedures. Best Case/Worst Case (BC/WC) is a communication tool that uses scenario planning to support patients' decision making. This article describes the protocol for a multisite, cluster randomised trial to test the effect of training nephrologists to use the BC/WC communication tool on patient receipt of palliative care, and quality of life and communication. METHODS AND ANALYSIS: We are enrolling attending nephrologists, at 10 study sites in the USA, who see outpatients with advanced chronic kidney disease considering dialysis. We aim to enrol 320 patients with an estimated glomerular filtration rate of ≤24 mL/min/1.73 m2 who are age 60 and older and have a predicted survival of 18 months or less. Nephrologists will be randomised in a 1:1 ratio to receive training to use the communication tool (intervention) at study initiation or after study completion (wait-list control). Patients in the intervention group will receive care from a nephrologist trained to use the BC/WC communication tool. Patients in the control group will receive usual care. Using chart review and surveys of patients and caregivers, we will test the efficacy of the BC/WC intervention with receipt of palliative care as the primary outcome. Secondary outcomes include intensity of treatment at the end of life, the effect of the intervention on quality of communication (QOC) between nephrologists and patients (using the QOC scale), the change in quality of life (using the Functional Assessment of Chronic Illness Therapy-Palliative Care scale) and receipt of dialysis. ETHICS AND DISSEMINATION: Approvals have been granted by the Institutional Review Board at the University of Wisconsin (ID: 2022-0193), with each study site ceding review to the primary IRB. All nephrologists will be consented and given a copy of the consent form. No patients or caregivers will be recruited or consented until their nephrology provider has chosen to participate in the study. Results will be disseminated via submission for publication in a peer-reviewed journal and at national meetings. TRIAL REGISTRATION NUMBER: NCT04466865.

Revisiting patient-related barriers to cancer pain management in the context of the US opioid crisis.

ABSTRACT: Patient fear of addiction is a well-documented barrier to the use of analgesic medications for cancer pain control. Over the past 2 decades in the United States, an "opioid crisis" has arisen, accompanied by risk messages delivered through news outlets, public health education, and patient-provider communication. The purpose of this study was to determine if patient-related barriers to cancer pain management-specifically, fears of addiction-and related pain outcomes (pain severity, pain interference with daily life, and adequacy of pain management) have worsened over the last 20 years. A sample of 157 outpatients with active recurrent or active metastatic cancer completed the Barriers Questionnaire-II (BQ-II) and measures of pain and analgesic use. We identified 7 comparison studies published between 2002 and 2020 that reported patient-related barriers using the BQ-II. Significant linear relationships were found between later year of publication and greater fear of addiction (harmful effect subscale score, B = 0.0350, R2 = 0.0347, F1,637 = 23.19, P < 0.0001) and between year of publication and more pain management barriers overall (total BQ-II score, B = 0.039, R2 = 0.065, F1,923 = 73.79, P < 0.0001). Relationships between BQ-II scores (harmful effect and total) and pain outcomes did not change over time. Despite worsening in patient-related barriers, the proportion of patients with adequate vs inadequate analgesic use did not differ over time. Notably, 40% of participants reported inadequate analgesic use, a statistic that has not improved in 20 years. Additional research is necessary to clarify factors contributing to changing beliefs. Findings indicate a continuing need for clinical and possibly system/policy-level interventions to support adequate cancer pain management.