Priorities to improve cancer caregiving: report of a caregiver stakeholder workshop.

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.

Psychobehavioral risk factors for financial hardship and poor functional outcomes in survivors of multiple primary cancers.

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.

Examining the relationship between multiple primary cancers and psychological distress: A review of current literature.

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

A Qualitative Study of the Pain Experience of Black Individuals With Cancer Taking Long-Acting Opioids.

BACKGROUND: Little is known about the experience of Black individuals with cancer taking long-acting opioids for cancer pain. OBJECTIVE: This study aimed to describe the day-to-day experience of living with pain and the experiences of taking opioids for pain management among Black individuals with cancer prescribed with long-acting opioids. METHODS: This qualitative descriptive study was part of a larger investigation focused on opioid adherence. Participants (N = 14) were interviewed using a semistructured interview guide. Analysis followed conventional content analysis and constant comparison approaches. Sociodemographics, clinical information, and the Brief Pain Inventory form were collected. RESULTS: The majority of the subsample was female (64.3%), not married (78.6%), and with a median age of 52.5 years. Participants were taking either MS Contin (85.7%) or OxyContin (14.3%). The Brief Pain Inventory median "average" pain severity scores and pain interference scores were 5.1/10 (interquartile range [IQR] = 6.1) and 3.5/10 (IQR = 6.7), respectively. Three themes are reported from the analyses: desire for control, barriers to pain relief, and isolation versus connectedness. CONCLUSION: Our findings highlight the persistent nature of moderate to severe cancer pain and how pain and its treatment interfere with patients' lives. The findings describe ways that patients learn to manage and exert control over pain despite conflicting attitudes and dealing with opioid stigma. IMPLICATION FOR PRACTICE: Clinicians should partner with patients with cancer, especially people of color, who may experience intersecting stigmas related to their cancer pain and opioid use, to best provide an individualized and culturally sensitive pain treatment plan.

Epigenomic Links Between Social Determinants of Health and Symptoms: A Scoping Review.

Social determinants of health (SDoH) impact health and wellness. The link between SDoH and adverse health outcomes, including symptom occurrence and severity, may be explained by an individual's physiologic response to one or more SDoH. One potential mechanism underlying this physiologic response linking SDoH and symptoms is the dynamic epigenome. The purpose of this scoping review of the literature was to examine differential susceptibility for symptoms by identifying and summarizing research linking SDoH and symptoms through epigenomic mechanisms. PubMed was searched to identify empirical research where at least one SDoH was an independent or dependent variable, at least one symptom was investigated, and the investigation included an epigenomic measure. Of the 484 articles initially retrieved, after thorough vetting, 41 articles met eligibility. The most studied symptom was depressive symptoms followed by anxiety, cognitive function, sleep dysfunction, and pain. The most frequently studied SDoH were: 1) stress, particularly early life stress and acculturative stress; and 2) trauma, predominantly childhood trauma. DNA methylation and telomere length were the most studied epigenomic measures. Four genes (SLC6A4, BDNF, NR3C1, OXTR) had evidence from multiple studies and across methodological approaches linking SDoH to symptoms. This review supports the inclusion of epigenomic approaches to better understand the link between SDoH and symptoms and provides evidence that SDoH impact telomere length and the methylation of genes involved in neurotransmitter signaling, neuronal survival, behavior, inflammation and stress response.

Financial Hardship and its Associations with Perceived Sleep Quality in Participants with Type 2 Diabetes and Obstructive Sleep Apnea.

OBJECTIVES: The purpose of this study was to explore social determinants of health (SDoH), and disease severity as predictors of sleep quality in persons with both Obstructive Sleep Apnea (OSA) and type 2 diabetes (T2D). METHODS: Disease severity was measured by Apnea-Hypopnea Index [(AHI) ≥ 5] and HbA1c for glycemic control. SDoH included subjective and objective financial hardship, race, sex, marital status, education, and age. Sleep quality was measured by Pittsburgh Sleep Quality Index (PSQI). RESULTS: The sample (N = 209) was middle-aged (57.6 ± 10.0); 66% White and 34% African American; and 54% men and 46% women. Participants carried a high burden of disease (mean AHI = 20.7 ± 18.1, mean HbA1c = 7.9% ± 1.7%). Disease severity was not significantly associated with sleep quality (all p >.05). Worse sleep quality was associated with both worse subjective (b = -1.54, p = .015) and objective (b = 2.58, p <.001) financial hardship. Characteristics significantly associated with both subjective and objective financial hardship included being African American, female, ≤ 2 years post high school, and of younger ages (all p < .01).Discussion: Financial hardship is a more important predictor of sleep quality than disease severity, age, sex, race, marital status, and educational attainment, in patients with OSA and T2D.

Financial Hardship and Quality of Life Among Patients With Advanced Cancer Receiving Outpatient Palliative Care: A Pilot Study.

BACKGROUND: Patients with advanced cancer are increasingly experiencing financial hardship (FH) and associated negative health outcomes. OBJECTIVE: The aims of this study were to describe FH and explore its relationship to quality of life (QOL) in patients with advanced cancer receiving outpatient palliative care (PC). METHODS: Validated questionnaires assessed FH, QOL dimensions, symptom burden, and sociodemographic and clinical characteristics. Descriptive statistics characterized the sample and described FH. Pearson correlation and linear regression assessed relationships between FH and QOL. RESULTS: The average participant (n = 78) age was 56.6 (SD, 12.2) years. Most were female (56.4%), White (50%) or Black (46.2%), and had a range of education, partner statuses, and cancer diagnoses. Median time since cancer diagnosis was 35.5 months (interquartile range, 9-57.3 months). Highest mean symptom burden scores were for pain (2.5 [SD, 1.0]) and fatigue (2.0 [SD, 1.1]), on a 0- to 3-point scale (higher score representing worse symptom burden). The median COST (COmphrehensive Score for financial Toxicity) score was 15.0 (interquartile range, 9.0-23.0). Most (70%) had some (n = 43) or extreme (n = 9) difficulty paying for basic needs. Greater than 28% (n = 21) incurred cancer-related debt. Multivariate models indicated that FH negatively affected role limitations due to physical health ( P = .008), pain ( P = .003), and emotional well-being ( P = .017) QOL dimensions. CONCLUSIONS: Financial hardship, QOL, and symptom burden scores demonstrate need for continued support for and research among patients with advanced cancer. Data support links between FH and important QOL dimensions. Larger, longitudinal studies are needed to understand how FH affects QOL in patients with advanced cancer. IMPLICATIONS FOR PRACTICE: Proactive financial assessment and interventions are needed to support patients with advanced cancer experiencing the cumulative effects of cancer and its treatment.

Intensive Daily Symptom and Function Monitoring Is Feasible and Acceptable to Women Undergoing First-Line Chemotherapy for Gynecologic Cancer.

BACKGROUND: Women receiving chemotherapy for gynecologic cancer (GC) experience severe symptoms with associated functional changes. Understanding day-to-day symptom and function variation within and across chemotherapy treatment cycles could inform improved symptom management, but such studies are rare and may be infeasible in clinical care. OBJECTIVE: The aim of this study was to evaluate feasibility and acceptability of daily symptom monitoring combined with objective and self-reported functional assessments every 21 days during active chemotherapy for GC. METHODS: Thirty women enrolled in a prospective observational study during first-line chemotherapy completed a daily symptom and falls diary during their entire chemotherapy treatment period. Patient-reported outcomes and objective symptom and function testing were assessed before each chemotherapy appointment. Study outcomes included accrual and attrition rates, completion of study assessments, and qualitative perceptions of study participation. RESULTS: Participants were 92% White, 60% had high school or higher education, 68% were married/partnered, and 62% had stage III or IV cancer at diagnosis. The study had an 83% accrual rate, 6.6% early withdrawal rate, and 17% total attrition rate. Missing assessments for prechemotherapy patient-reported outcomes and objective assessments ranged from 27% to 35% and 35% to 47% respectively, with a general decrease across cycles. Daily diary completion rate was 83% overall. Participants rated study participation positively. CONCLUSIONS: Intensive daily symptom and function monitoring was feasible and acceptable to GC patients and may provide a sense of symptom controllability. IMPLICATIONS FOR PRACTICE: Daily symptom and function monitoring in research studies may provide patients with information to support symptom discussions with the clinical team. Future work should develop proactive symptom management interventions using personalized symptom trajectories.

Domains of Structured Oral Anticancer Medication Programs: A Scoping Review.

PROBLEM IDENTIFICATION: An interprofessional approach is necessary to support the multifactorial process of patient adherence to oral anticancer medications (OAMs). This scoping review aims to identify structured OAM programs in published literature, identify components within studies, and propose a framework for institutions developing or maintaining OAM programs. LITERATURE SEARCH: Embase®, PubMed®, and CINAHL® databases were searched for studies published between January 2000 and April 2021. DATA EVALUATION: Two reviewers screened studies and extracted data. Characteristics and specific domains of the OAM programs were captured. Key components of the programs were identified, and a framework was created to guide program development. SYNTHESIS: Components identified among the 21 studies were education; counseling; follow-up; dedicated clinician contact; adverse event and toxicity monitoring; adherence monitoring; drug procurement, delivery, and supply; patient- and system-level cost reduction; information technology; and risk assessment. IMPLICATIONS FOR RESEARCH: Based on the findings, a framework for building and evaluating OAM adherence programs is proposed. Future studies should evaluate the reliability and validity of this framework because further testing may lead to the development of additional components.

ONS Guidelines™ to Support Patient Adherence to Oral Anticancer Medications.

PURPOSE: This evidence-based guideline intends to support patients, clinicians, and others regarding interventions and processes to support patient adherence to oral anticancer medications (OAMs). METHODOLOGIC APPROACH: A panel of healthcare professionals and patient representatives developed a clinical practice guideline to support patients taking OAMs. GRADE (Grading of Recommendations Assessment, Development, and Evaluation) methodology and criteria for trustworthy guidelines were followed. Risk of bias was assessed using the Cochrane Risk of Bias 2 tool. A quantitative or narrative synthesis of the evidence was completed. Certainty of the evidence was assessed using GRADE. FINDINGS: The panel agreed on recommendations and suggested an adherence risk assessment, education addressing adherence, ongoing assessment, proactive follow-up, coaching, and motivational interviewing in addition to usual care. The panel suggested the implementation of a structured OAM program. IMPLICATIONS FOR NURSING: As cancer treatment shifts from clinic to home settings, interventions and programs to support patients on OAMs are needed.

Comparisons of Depression, Sexual Function, and Quality of Life Between Women With Gynecological Cancers and Race-Matched Healthy Controls.

BACKGROUND: Although higher incidence and mortality of gynecological cancer (GynCa) are documented in black compared with white women, few studies have documented quality of life (QOL) or healthy control comparisons. OBJECTIVE: This study compared depression, sexual function, and QOL between patients with GynCa and race-matched healthy controls. METHODS: Patients with GynCa and healthy controls completed the Patient Health Questionnaire-9, Female Sexual Function Index, and Functional Assessment of Cancer Therapy-General measures at baseline; GynCa patients were assessed again at 6 months post-radiation therapy (RT). RESULTS: Analyses included 84 participants (51% white, 49% black), including 28 GynCa patients and 56 controls with similar marital status. Compared with healthy controls, patients were younger, had a higher body mass index, and had more depression (P = .01); 82% of the patients and 71% of the healthy controls met criteria for sexual dysfunction at baseline (P = .29). Patients pre-RT had greater sexual dysfunction and lower QOL (P = .001) than controls did; patients at 6-month post-RT showed improved sexual function scores compared with pre-RT, with similar results to controls. White GynCa patients reported less sexual desire (P = .02), more pain (P = .05), and lower total Female Sexual Function Index scores (P = .01) than did black GynCa patients. Both black and white GynCa patients reported lower total QOL than their race-matched controls did (P = .07 and P = .002). CONCLUSIONS: Women with GynCa reported more depression and lower QOL than did healthy controls pre-RT. Among GynCa patients, white women had more sexual dysfunction than black women did. IMPLICATIONS FOR PRACTICE: The differences in sexual dysfunction between white and black women with GynCa suggest developing guidelines directing routine sexual assessment and rehabilitation in women treated for GynCa.

Characterizing Pain Experiences: African American Patients With Multiple Myeloma Taking Around-the-Clock Opioids.

BACKGROUND: Despite known disparities by race, studies to date have not focused on pain characterization among African American patients with multiple myeloma. OBJECTIVES: This study aimed to characterize the pain experience, beliefs about pain and pain control, and additional symptoms among African American patients with multiple myeloma taking around-the-clock opioids. METHODS: This study employed secondary analysis of baseline data from a completed longitudinal study of opioid adherence. Descriptive statistics were used to characterize the sample, pain experience, beliefs regarding pain and pain control, and related symptoms. FINDINGS: Participants (N = 34) experienced everyday pain and additional symptoms, and half experienced depression. Pain management barriers included dislike of pills, fear of addiction, and bothersome side effects from pain and medication. Additional larger studies can incorporate multilevel factors contributing to high symptom burden.

Financial Toxicity: A Review of the Literature and Nursing Opportunities.

BACKGROUND: Studies have demonstrated the negative effects of the costs of cancer care on the health and well-being of patients with cancer. Nurses require knowledge of the risk factors, experiences, and outcomes associated with financial toxicity prior to designing evidence-based studies and protocols to address financial toxicity. OBJECTIVES: This article summarizes the state of the science in financial toxicity among patients with cancer, with the goal of guiding nurses in leading research and evidence-based practice efforts to decrease the impact of financial toxicity on patient outcomes. METHODS: The authors reviewed published research, theoretical models, and research grants that focus on financial toxicity among patients with cancer. The authors also synthesized study findings and project goals while emphasizing opportunities for nurses to meaningfully engage within this area as researchers and clinicians. FINDINGS: Substantial cross-sectional descriptive work documents the risk factors, experiences, and outcomes of financial toxicity. Future work should address methodologic concerns by using comprehensive, validated measures and applying conceptual models to design and test financial toxicity interventions using prospective, rigorous methodologies. The authors propose a conceptual model to assist researchers and clinicians.

Mind the Mode: Differences in Paper vs. Web-Based Survey Modes Among Women With Cancer.

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.

Psychological Distress, Health Behaviors, and Benefit Finding in Survivors of Multiple Primary Cancers: Results From the 2010 Livestrong Survey.

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.