Patients with advanced cancer and their spouses parenting minor children: The role of the relationship context in parenting concerns.

OBJECTIVE: Patients with advanced cancer who parent minor children report parenting concerns and increased psychological distress. This cross-sectional study seeks to understand parenting-related issues in patients and spousal caregivers from a relationship perspective. METHODS: Patients with a metastatic solid malignancy and their spouses independently completed cross-sectional assessments of psychological distress (Hospital Anxiety and Depression Scale), parenting concerns (Parenting Concern Questionnaire) and efficacy (Cancer-Related Parenting Self-Efficacy Scale), and relationship measures (DAS-7, Couples' Illness Communication Scale, and Family Relationship Index). RESULTS: Of the 51 patients (57% female, 49% NHW, mean age 42 years) and spouses (43% female, 43% NHW, mean age of 42 years), approximately 50% couples endorsed psychological distress and were at risk for family dysfunction. Spouses reported significantly higher levels of parenting-related concerns (t = -2.0, p < 0.05) and anxiety (t = -2.8, p < 0.001) than patients. Parenting concerns were significantly associated with illness communication (r = -0.56, p < 0.001) and family function (r = -0.38, p < 0.001). Although the expected interactions between parenting concerns and relationship variables (i.e., illness communication, dyadic adjustment, and family function) were significant for depressive symptoms at p < 0.05, the associations were not in the expected direction. Relationship function buffered against depressive symptoms for those with low rather than high parenting concerns. CONCLUSIONS: Not only patients but also spouses report cancer-related parenting concerns. The associations between parenting concerns and distress were stronger for spouses than patients. Dual caregiving appears to be a particularly stressful role. Because relationship function was associated with parenting concerns, we suggest that parent support programs that are couple-based and include both parenting-specific and relationship-specific content may be most effective in reducing distress for this vulnerable population.

Patient competence in chronic illness: A concept derivation.

AIMS AND OBJECTIVES: This paper aims to inform nursing and other healthcare disciplines by clearly defining patient competence and the skills required to improve self-care behaviours. BACKGROUND: Competence has been defined in education and leadership. However, competence in persons with chronic disease has not been expanded upon since one publication in 1983. Patient competence needs to be developed and defined so that healthcare disciplines can understand the attributes necessary for a patient to be deemed competent to promote self-care behaviours. DESIGN: A concept derivation. METHODS: Walker and Avant's approach to concept derivation was used to identify a base concept (competence) that is well-defined in another field, define the concepts associated with the parent field, and transpose that definition to a new field to formulate a redefined concept. PsycINFO, Scopus, Web of Science and Medline were searched, and 21 articles were included. RESULTS: Patient competence is defined as the ability of a person with a chronic illness to reach skill mastery, achieve knowledge, maintain a positive attitude and develop trust in themselves and in healthcare providers that will facilitate active engagement to improve self-care behaviours. CONCLUSIONS: Defining patient competence is important in assisting nurses and other healthcare providers in understanding the attributes needed to deem a patient competent, especially those living with chronic illnesses requiring lifelong self-care behaviours. More research is needed to aid in the designing of a precise instrument for measuring this phenomenon. RELEVANCE TO CLINICAL PRACTICE: Concept derivation of patient competence provides a framework for nurses and other members of the healthcare profession to understand the attributes needed to determine patient competence.

The Symptom Experience of Patients with Advanced Melanoma Undergoing Immune Checkpoint Inhibitor (ICI) Therapy.

OBJECTIVES: The advent of immune checkpoint inhibitor (ICI) therapy has vastly improved outcomes for patients with advanced melanoma. However, the symptom burden and intensity with their impact on quality-of-life (HRQoL) and functionality are heterogeneous and unpredictable. We used descriptive exploratory content analysis from interviews to capture the patient experience after they had completed quantitative data collection of their symptom burden and interference with the use of two patient-reported outcome (PRO) instruments. DATA SOURCES: Participants from a single center with advanced melanoma (n = 19) who are undergoing ICI therapy completed the Modified MD Anderson Symptom Inventory and Functional Assessment of Cancer Therapy-Melanoma and recorded semistructured interviews. Interpretive description informed the inductive and iterative analysis approach. CONCLUSION: Participants had a heterogenous experience of ICI and melanoma-related symptoms: distress (84%), fatigue (68%), rash or skin changes (53%), pain (30%), diarrhea (30%), itching (26%), and shortness of breath (21%), with varying interference within HRQoL domains, mood (47%), relations with other people (26%), and activity (21%). Some noted a lack of physical interference (79%). Uncertainty was a pervasive theme in the interviews (68%) despite the majority having positive thoughts about ICI therapy (58%) and expectations of the success of therapy (53%). The physical and emotional burden of a melanoma diagnosis, undergoing therapy, and the uncertainty of the outcomes are pervasive for patients. IMPLICATIONS FOR NURSING PRACTICE: Communication surrounding the diagnosis, prognosis, treatment options, and outcomes need to be clear and acknowledge there are unknowns. Nurses may benefit from using a validated PRO instrument to help document and understand the patient's symptom experience while undergoing ICI therapy.

Impact of an automated, remote monitoring and coaching intervention in reducing hospice cancer family caregiving burden: A multisite randomized controlled trial.

BACKGROUND: Care for those with life-limiting cancer heavily involves family caregivers who may experience significant physical and emotional burden. The purpose of this study was to test the impact of Symptom Care at Home (SCH), an automated digital family caregiver coaching intervention, during home hospice, when compared to usual hospice care (UC) on the primary outcome of overall caregiver burden. Secondary outcomes included Caregiver Burden at weeks 1 and 8, Mood and Vitality subscales, overall moderate-to-severe caregiving symptoms, and sixth month spouse/partner bereavement outcomes. METHODS: Using a randomized, multisite, nonblinded controlled trial, 332 cancer family caregivers were enrolled and analyzed (159 SCH vs. 173 UC). Caregivers were primarily White (92%), female (69%), and spouse caregivers (53%). Caregivers provided daily reports on severity levels (0-10 scale) for their anxiety, depressed mood, fatigue, disturbed sleep, and caregiving interference with normal activities. These scores combined constituted the Caregiver Burden primary outcome. Based on reported symptoms, SCH caregivers received automated, tailored coaching about improving their well-being. Reports of moderate-to-severe caregiving symptoms also triggered hospice nurse notification. Secondary outcomes of Mood and Vitality were subcomponents of the Caregiver Burden score. A combined bereavement adjustment tool captured sixth month bereavement. RESULTS: The SCH intervention reduced overall Caregiver Burden compared to UC (p < .001), with a 38% reduction at 8 weeks and a medium-to-large effect size (d = .61). SCH caregivers experienced less (p < .001) disruption in both Mood and Vitality. There were higher levels of moderate-to-severe caregiving symptoms overtime in UC (OR, 2.722). All SCH caregivers benefited regardless of caregiver: sex, caregiver relationship, age, patient diagnosis and family income. SCH spouse/partner caregivers achieved better sixth month bereavement adjustment than UC (p < .007). CONCLUSIONS: The SCH intervention significantly decreased caregiving burden over UC and supports the maintenance of family caregiver mood and vitality throughout caregiving with extended benefit into bereavement.

Inflammatory Breast Cancer: Understanding the Patient Experience.

BACKGROUND: Inflammatory breast cancer (IBC) is an aggressive, locally advanced cancer with a 5-year survival rate of approximately 40%. Although patients with IBC likely experience significant and variable symptom burden from diagnosis through survivorship, the description of the symptom burden in this population is limited. OBJECTIVES: The purpose of this study was to describe the experience of patients with IBC and define the content domain for a patient-reported outcome measure of IBC symptom burden. METHODS: Twenty patients with IBC described their experience in single qualitative interviews. Content analysis was used to define the symptom burden content domain. Relevance ratings by a panel of experts reduced the number of items for a preliminary patient-reported outcome symptom burden measure. RESULTS: The mean (SD) participant age was 52.8 (12.0) years; 50.0% had distant metastatic disease, and 85.0% were currently receiving treatment. Content analysis revealed 45 symptoms, with 20 symptoms reported by greater than or equal to 20% of participants. All participants described localized disease-related symptoms. Treatment-related symptoms varied among participants based on the modalities received. CONCLUSION: Patients with IBC experience symptom burden that is distinct from the symptom burden experienced by patients with non-IBC. IMPLICATIONS FOR PRACTICE: Differentiating the disease-related symptoms of IBC may assist clinicians in making timely and accurate diagnoses for IBC. A disease- and treatment-specific measure of the symptom burden of IBC should be incorporated in clinical practice to allow for regular assessment and evaluation of symptom burden and implementation of evidence-based interventions for symptom management.

Impact of Immune Checkpoint Inhibitor Therapy on Quality of Life in Patients With Advanced Melanoma: A Systematic Review.

BACKGROUND: Immune checkpoint inhibitors (ICIs) were approved to treat advanced melanoma (AM) because of meaningful clinical benefit. These early data reported that ICI therapy is generally well tolerated, and despite symptoms, patients reported a high global health-related quality of life (HRQOL). OBJECTIVE: Immune checkpoint inhibitors are widely used in the oncology community; the aim of this systematic review was to evaluate current data on ICI therapy and its impact on HRQOL of patients with AM. METHODS: The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were followed during this systematic review to identify and select studies from the PubMed, OVID, EMBASE, and Cochrane databases. Selected studies were downloaded into Covidence and analyzed for trends in how ICI therapy impacts HRQOL in patients with AM. Multiple tools were used to assess the quality of the studies. RESULTS: The 16 studies included 12 quantitative, 2 qualitative, and 2 mixed-methods studies. The quality of the studies was moderate (n = 7) or strong (n = 9). Symptoms that impacted HRQOL were fatigue, endocrine dysfunction, rash, diarrhea, cognitive impairment, emotional impact (anxiety and depression), and financial toxicity. Suicidal ideation and 1 attempt were reported in 2 studies, which had not been previously published. CONCLUSION: Patient-reported symptoms due to ICI negatively impacted HRQOL. Anxiety and depression are prevalent. Current QOL instruments do not capture the entire patient experience. IMPLICATIONS FOR PRACTICE: Patients need to be asked if their symptoms are impacting their HRQOL. Further prospective research is needed to develop or adjust current patient-reported outcome instruments to adequately capture the impact of ICIs on HRQOL.

Supportive Care for Dual Caregivers who Care for Their Partner With Cancer and Their Young Children.

PURPOSE: Advanced cancer patients and their spouses who parent minor children report parenting concerns and increased psychological distress. This single-arm trial examined the feasibility and initial evidence for efficacy of a novel parent support program. METHODS: Patients with a metastatic solid malignancy and their spouses completed self-reported assessments of psychological distress (HADS), parenting concerns (PCQ) and efficacy (CaPSE) at baseline. Both patients and spouses jointly attended the first two sessions addressing illness communication and family routines. Spouses individually attended two additional sessions focusing on caregiver support and death preparedness. All four sessions were delivered via videoconference by a licensed psychological counselor. Dyads completed program evaluations and were reassessed six and 12 weeks postintervention. RESULTS: With a consent rate of 61%, 10 patients (50% female; 90% non-Hispanic White; mean age = 42 years) and their spouses (50% female; 70% non-Hispanic White; mean age = 42 years) completed the assessments. All patients and 90% of spouses attended all intervention sessions and evaluated the program favorably. Paired t-tests revealed significant improvements in patients' parenting concerns at the six weeks (P = 0.003) and parenting efficacy at the six weeks (P = 0.03) and 12 weeks (P = 0.03) follow-ups. For spouses, we found significant improvements in parenting efficacy (P < 0.001) and depressive symptoms (P = 0.04) at six weeks and parenting concerns at both six weeks (P = 0.006) and 12 weeks (P = 0.001) follow-ups. CONCLUSIONS: The initial testing of our parenting intervention yielded promising results regarding feasibility and an initial signal of intervention efficacy. Thus, a randomized controlled trial for further testing is warranted.

Measuring symptom burden in patients with cancer during a pandemic: the MD Anderson symptom inventory for COVID-19 (MDASI-COVID).

BACKGROUND: Symptom expression in SARS-CoV-2 infection (COVID-19) may affect patients already symptomatic with cancer. Patient-reported outcomes (PROs) can describe symptom burden during the acute and postacute stages of COVID-19 and support risk stratification for levels of care. At the start of the COVID-19 pandemic, our purpose was to rapidly develop, launch through an electronic patient portal, and provide initial validation for a PRO measure of COVID-19 symptom burden in patients with cancer. METHODS: We conducted a CDC/WHO web-based scan for COVID-19 symptoms and a relevance review of symptoms by an expert panel of clinicians treating cancer patients with COVID-19 to create a provisional MD Anderson Symptom Inventory for COVID-19 (MDASI-COVID). English-speaking adults with cancer who tested positive for COVID-19 participated in the psychometric testing phase. Patients completed longitudinal assessments of the MDASI-COVID and the EuroQOL 5 Dimensions 5 Levels (EQ-5D-5L) utility index and visual analog scale, which were presented through an electronic health record patient portal. To test the validity of the MDASI-COVID to distinguish between known groups of patients, we hypothesized that patients hospitalized, including having a hospitalization extended, for COVID-19 versus those not hospitalized would experience higher symptom burden. Correlation of mean symptom severity and interference scores with relevant EQ-5D-5L scores tested concurrent validity. The reliability of the MDASI-COVID was evaluated by calculating Cronbach alpha coefficients and test-retest reliability was evaluated by calculating Pearson correlation coefficients between the initial assessment and a second assessment no more than 14 days later. RESULTS: The web-based scan found 31 COVID-19-related symptoms; rankings of a 14-clinician expert panel reduced this list to 11 COVID-specific items to be added to the core MDASI. Time from literature scan start in March 2020 to instrument launch in May 2020 was 2 months. Psychometric analysis established the MDASI-COVID's reliability, known-group validity, and concurrent validity. CONCLUSIONS: We were able to rapidly develop and electronically launch a PRO measure of COVID-19 symptom burden in patients with cancer. Additional research is needed to confirm the content domain and predictive validity of the MDASI-COVID and define the symptom burden trajectory of COVID-19.

Living With an Advanced Cancer While Parenting Minor Children: A Needs Assessment Study.

BACKGROUND: Evidence-based interventions addressing the needs of couples co-parenting young children while facing an advanced cancer diagnosis are lacking. Thus, this study seeks to identify parenting-related intervention needs and delivery preferences of advanced cancer patients and their spouses/co-parents. METHODS: Twenty-one couples completed quantitative measures of cancer-related parenting concerns, relationship and family functioning, and service needs along with individual semi-structured interviews. RESULTS: Patients (mean age=44 years, 48% female, 91% White) and spouses (mean age=45 years, 52% female, 91% White) reported family distress (62% of couples) and marital distress (29% of couples). Parenting concerns were generally high with patients revealing concerns particularly regarding the practical impact of the cancer on the child(ren). Spouses rated concerns about the co-parent significantly higher (P<.001) than patients. Parenting concerns were inversely associated with relationship (P<.001 for patients; P=.03 for spouses) and family functioning (P<.001 for patients). Themes identified through qualitative interviews include needs related to maintenance of family routines and traditions, childcare, transportation, meals, home maintenance, and finances. Couples who endorsed marital distress also indicated a need for conflict resolution skills. All patients and 89% of spouses would like to receive parenting-related education/services; up to 50% of couples preferred targeted, self-led readings without therapist support; and up to 50% desired counseling sessions indicating a preference towards dyadic and video conferenced intervention delivery. CONCLUSIONS: The delivery of optimal supportive care involves a family-focused perspective such as screening for parenting status and referrals to social work services to address the need of tangible resources and manage parenting-related distress.

Technology-Assisted mHealth Caregiver Support to Manage Cancer Patient Symptoms: A Randomized Controlled Trial.

CONTEXT: Caregivers managing symptoms of family members with cancer during home hospice care, often feel ill-prepared and need patient care coaching. OBJECTIVES: This study tested the efficacy of an automated mHealth platform that included caregiver coaching on patient symptom care and nurse notifications of poorly controlled symptoms. The primary outcome was caregiver perception of patients' overall symptom severity throughout hospice care and at weeks one, two, four, and eight. Secondary outcomes compared individual symptom severity. METHODS: Caregivers (n = 298) were randomly assigned to the Symptom Care at Home (SCH) intervention (n = 144) or usual hospice care (UC) (n = 154). All caregivers placed daily calls to the automated system that assessed the presence and severity of 11 end-of-life patient physical and psychosocial symptoms. SCH caregivers received automated coaching on symptom care based on reported patient symptoms and their severity. Moderate-to-severe symptoms were also relayed to the hospice nurse. RESULTS: The SCH intervention produced a mean overall symptom reduction benefit, over UC, of 4.89 severity points (95% CI 2.86-6.92) (P < 0.001), with a moderate effect size (d = 0.55). The SCH benefit also occurred at each timepoint (P < 0.001- 0.020). There was a 38% reduction in days reporting moderate-to-severe patient symptoms compared to UC (P < 0.001) with 10/11 symptoms significantly reduced in SCH compared to UC. CONCLUSION: Automated mHealth symptom reporting by caregivers, paired with tailored caregiver coaching on symptom management and nurse notifications, reduces cancer patients' physical and psychosocial symptoms during home hospice, providing a novel and efficient approach to improving end-of-life care.

Development and validation of a patient-reported outcome measure to assess symptom burden after chimeric antigen receptor T-cell therapy.

This cross-sectional study aimed to develop and validate a patient-reported outcomes (PROs) assessment tool to assess symptom burden and daily functioning in patients after chimeric antigen receptor (CAR) T-cell therapy, the MD Anderson Symptom Inventory (MDASI-CAR). The items were generated based on literature review, content elicitation interviews with patients, and clinician's review. The patients completed the MDASI core and module, single-item quality-of-life (QoL) measure and Patient-Reported Outcomes Measurement Information System-29 (PROMIS-29). The psychometric validation analysis was based on the acceptability after item reduction process. The final 10 MDASI-CAR module items included tremors, fever/chills, headache, balance, dizziness, attention, difficulty speaking, coughing, sexual dysfunction, and diarrhoea with high internal consistency (Cronbach's alpha: MDASI Core, 0.865; MDASI Interference, 0.915; CAR-T module, 0.746). The MDASI-CAR has excellent known-group validity that was demonstrated by differentiate patients based on patient's performance status (Cohen's d for MDASI core = -1.008, interference = -0.771, module = -0.835). Criterion validity was demonstrated by the significant correlations between the MDASI-CAR composite score, the single QoL item and the relevant domains on PROMIS-29 (all p < 0.05). This study established the MDASI-CAR module as a reliable and valid PRO tool for monitoring symptom burden after CAR T-cell therapy in patients with haematological malignancies. The findings need to be validated with a longitudinal design.

A scoping review on the nurse scientist role within healthcare systems.

BACKGROUND: The role of the nurse scientist in the clinical setting is not well defined, which contributes to variability in role implementation, scope, administration, funding, and affiliation across healthcare sites. AIMS: The aim of this scoping review was to identify attributes of the clinical nurse scientist role and its operationalization in the clinical setting through available evidence. METHODS: A comprehensive, computerized search of the literature in PubMed, Medline, and CINAHL was conducted in early May 2020 by a medical research librarian and repeated in July 2021 and April 2022. The 5-step framework described by Arskey and O'Malley guided the review methodology. Two reviewers conducted an independent screen of all articles, followed by a full-text review of eligible articles by two independent reviewers each using a standardized data extraction template. Themes were then organized and synthesized using descriptive content analysis from the included articles. RESULTS: A final sample of 55 full-text articles were included in the review. Overall, the findings suggest that the nurse scientist role in a clinical setting can be challenging to implement in complex healthcare environments. Successful models include the nurse scientist in a leadership role, alignment of research with institutional priorities, and strong support from senior leadership. LINKING EVIDENCE TO ACTION: Findings suggest that standardized guidelines are lacking to govern the implementation of the nurse scientist role in the clinical setting. To succeed, the nurse scientist role must be valued and supported by organizational leaders. Further, access to resources to build infrastructure must be provided. The magnitude and scope of individual organizational support can be tailored based on the resources of the institution; however, the foundation of having institutional leadership support is critical to role success of the clinical nurse researcher.

Factors of maladaptive coping in emergency healthcare professionals: A systematic review.

BACKGROUND: Emergency healthcare professionals (EHPs) face significant occupational stressors requiring the skilled use of adaptive coping strategies. Some EHP resort to maladaptive coping (MC) strategies that negatively impact their mental health, yet MC strategies are not clearly defined in the literature. Examining factors that predispose EHP to MC can support interventions to improve coping and well-being. OBJECTIVE: This systematic review examined MC among EHP working in pre-hospital and hospital-based settings. The primary aim was to identify factors associated with MC strategies used by EHP. METHODS: Embase, Ovid, CINAHL Plus, PsychInfo, and the Cochrane Library were systematically searched for quantitative studies measuring MC use among EHP. Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) 2020 checklist was used to guide the review. Studies were included if they: (a) targeted licensed healthcare professionals providing patient care, (b) occurred in emergency department or pre-hospital emergency setting, and (c) examined provider coping. Studies were excluded if they: (a) did not include EHPs, (b) did not differentiate results in mixed samples, (c) did not clearly measure coping strategies, (d) failed to include MC strategies in the results, or (e) were not available in full text. Risk of bias and study quality was appraised using Joanna Briggs Institute (JBI) Critical Appraisal Checklist. Bandura's Social Cognitive Theory (SCT) guided the final synthesis, drawing conclusions from the evidence to identify factors associated with MC in EHP. RESULTS: A total of 14 cross-sectional studies, published between 2003 and 2021, were included in the review. Included studies were conducted in either pre-hospital, hospital, or a combination of both settings. Most studies included mixed samples or emergency physicians. A variety of coping strategies were significantly correlated with poor mental health outcomes including venting, denial, disengagement, self-blame, and substance use. Among personal factors, EHPs who were female, older than 50, living alone, with personal trauma history were significantly more likely to use MC strategies. Additionally, EHP with children, work experience, higher life satisfaction, and resilience were negatively associated with MC. Environmental factors positively associated with MC included work stress, workload, and poor benefits. Trauma exposure had a positive, but non-significant relationship. CONCLUSIONS: Emergency healthcare professionals use a variety of coping strategies, many of which are maladaptive and significantly related to poor mental health outcomes. Several personal and environmental factors contribute to behavior that reflect the use of MC strategies, but findings are sparse. Researchers should consider current limitations and challenges, particularly mental health stigma, when designing future studies. CLINICAL RELEVANCE: The evidence in this review suggests that certain factors predispose EHP for use of MC strategies. This review highlights an important research gap necessitating more robust studies to identify MC risk factors among EHP in chronically high-stress environments.

Dyadic versus individual delivery of a yoga program for family caregivers of glioma patients undergoing radiotherapy: Results of a 3-arm randomized controlled trial.

BACKGROUND: Despite their significant distress, supportive care interventions for caregivers of glioma patients are generally lacking. And, whether caregivers are more likely to benefit from interventions targeting patient-caregiver dyads or caregivers individually is unknown. This pilot randomized controlled trial compared the feasibility and preliminary efficacy of a dyadic yoga (DY) versus an individual caregiver yoga (CY) intervention as a supportive care strategy for family caregivers. METHODS: Patient-caregiver dyads were randomized to a DY, CY or usual care (UC) arm. DY and CY interventions were delivered over 15 sessions. Caregivers completed assessments of their depressive symptoms, quality of life (QOL), and caregiving reactions at baseline, 6 weeks, and 12 weeks, and a subset completed qualitative interviews at 12 weeks. RESULTS: With a consent rate of 63%, 67 dyads were randomized. Attendance in the DY was higher than in the CY group (session means, DY = 12.23, CY = 9.00; p = 0.06). Caregivers (79% female; 78% non-Hispanic White; mean age, 53 years) reported significantly more subjective benefit in the CY arm than in the DY arm (d = 2.1; p < .01), which was consistent with the qualitative assessment. There were medium effect sizes for improved mental QOL (d = 0.46) and financial burden (d = 0.53) in favor of the CY over the UC group. Caregivers in the CY group reported more caregiving esteem (d = 0.56) and less health decline (d = 0.60) than those in the DY group. CONCLUSION: Individual rather than dyadic delivery may be a superior supportive care approach for this vulnerable caregiver population. A larger, adequately powered efficacy trial is warranted.

Patient voice in metastatic cancer: A conceptual analysis.

AIM: To analyze the concept of patient voice and discuss implications for clinical care of individuals with metastatic cancer. BACKGROUND: The diagnosis of metastatic cancer requires increased patient support and healthcare resource utilization. The patient voice should be heard and incorporated into care planning to improve the overall experience of individual with metastatic cancer. DESIGN: Concept analysis. DATA SOURCES: Dictionary definitions and scientific literature from electronic databases, including PubMed. REVIEW METHODS: Using Walker and Avant's method of concept analysis, we identified attributes, antecedents, and consequences. RESULTS: Patient voice is defined as verbal or written communication by the patient to their healthcare partner to positively influence their quantity and quality of life. Attributes of patient voice include context, healthcare partner, safety, time, active listening, communication, and incorporation. Antecedents to patient voice include patient, baseline knowledge, continuing education, medical system culture, and emotional intelligence, and consequences include improved quality of life, adherence to treatment plan, overall satisfaction, and sense of control. Every instance of patient voice prepares the individual for future experiences that can positively impact their care. CONCLUSIONS: The concept of patient voice is vital to integrate into care to ensure individual's wishes and goals are incorporated in advanced disease populations. Systematically incorporating the patient voice into the care of individuals with metastatic cancer will allow patients to experience treatment and the progression to end-of-life care according to their preferences.

Characterization of Symptoms and Symptom Clusters for Type 2 Diabetes Using a Large Nationwide Electronic Health Record Database.

OBJECTIVE: A variety of symptoms may be associated with type 2 diabetes and its complications. Symptoms in chronic diseases may be described in terms of prevalence, severity, and trajectory and often co-occur in groups, known as symptom clusters, which may be representative of a common etiology. The purpose of this study was to characterize type 2 diabetes-related symptoms using a large nationwide electronic health record (EHR) database. Methods: We acquired the Cerner Health Facts, a nationwide EHR database. The type 2 diabetes cohort (n = 1,136,301 patients) was identified using a rule-based phenotype method. A multistep procedure was then used to identify type 2 diabetes-related symptoms based on International Classification of Diseases, 9th and 10th revisions, diagnosis codes. Type 2 diabetes-related symptoms and co-occurring symptom clusters, including their temporal patterns, were characterized based the longitudinal EHR data. Results: Patients had a mean age of 61.4 years, 51.2% were female, and 70.0% were White. Among 1,136,301 patients, there were 8,008,276 occurrences of 59 symptoms. The most frequently reported symptoms included pain, heartburn, shortness of breath, fatigue, and swelling, which occurred in 21-60% of the patients. We also observed over-represented type 2 diabetes symptoms, including difficulty speaking, feeling confused, trouble remembering, weakness, and drowsiness/sleepiness. Some of these are rare and difficult to detect by traditional patient-reported outcomes studies. Conclusion: To the best of our knowledge, this is the first study to use a nationwide EHR database to characterize type 2 diabetes-related symptoms and their temporal patterns. Fifty-nine symptoms, including both over-represented and rare diabetes-related symptoms, were identified.

The Bereavement Experience for Partners of Patients With Central Nervous System Tumors.

PURPOSE: To describe the experience of caregivers who have lost a partner to a central nervous system (CNS) tumor. PARTICIPANTS & SETTING: 8 bereaved partners of patients with CNS tumors enrolled in a dyadic, behavioral randomized controlled trial at a comprehensive cancer center in the southern United States. METHODOLOGIC APPROACH: Participants took part in a semistructured qualitative interview to describe the experience of their partner's death. Descriptive exploratory analysis was used to identify themes emerging from the interviews. FINDINGS: Themes identified from bereaved participants' experiences were related to caring for their partner, separating from their partner on patient death, and continuing without their partner following patient death. IMPLICATIONS FOR NURSING: Bereaved partners of patients with CNS tumors described how difficult it was to experience the patient's health decline and feeling unprepared for the patient's death, regardless of advance notice. Interventions targeting caregiver distress to improve their experience prior to and following the patient's death are needed.

Identification of Breast Cancer Survivors With High Symptom Burden.

BACKGROUND: While women diagnosed with breast cancer have increased survival when compared with other cancers, survivorship may include residual symptom burden from treatment and continuing endocrine therapies. OBJECTIVE: The objective of this study was to identify subgroups of breast cancer survivors experiencing similar symptom severity. METHODS: Participants were 498 women with breast cancer, not on active treatment. Symptom severity was self-reported using the MD Anderson Symptom Inventory. Target symptoms were included in a latent profile analysis. Factors related to subgroup membership and differences in quality of life (QOL) and functioning were explored using logistic regression. RESULTS: Mean age was 60.11 (SD, 11.32) years, 86.1% were white, and 79.1% were receiving endocrine therapy. Target symptoms included fatigue (reported at ≥5 by 22.8% of women), sleep disturbance (24.8%), and trouble remembering (17.2%). Two subgroups were identified: low symptom severity (77.0% of women) and high (23.0%). Older women (odds ratio [OR], 0.971; 95% confidence interval [CI], 0.952-0.989) and employed women (OR, 0.621; 95% CI, 0404-0.956) were less likely to be in the high subgroup; women with poorer performance status (OR, 1.653; 95% CI, 1.188-2.299) were more likely to be in the high subgroup. Women in the high subgroup reported lower QOL (P = .000) and greater interference with functioning (P = .000). CONCLUSIONS: Two subgroups of women with distinct symptom severity were identified. IMPLICATIONS FOR PRACTICE: Identification of women at risk for high symptoms during survivorship may allow clinicians to intensify their approach to symptom management, thereby mitigating poor outcomes and impairments in QOL.

Symptom-related patient-provider communication among women with breast cancer receiving chemotherapy.

PURPOSE: The purpose of this study was to determine the extent to which women being treated for breast cancer discussed their symptoms during the week prior to a clinic visit. METHOD: Women reported the severity of 11 symptoms (0-10 scale) daily using an automated patient-reported outcomes system. Clinic visits were audio recorded, and symptom discussions were coded. Moderate to severe symptoms reported in the week prior to the visit were compared to the symptoms discussed at the visit. RESULTS: Twenty-six clinic visits of 10 women (mean age, 51.6 years; half had advanced disease) were recorded. In the week prior to their visits, participants provided 183 reports of moderate to severe symptoms. Reported symptoms were discussed at 49.5% of visits, with 36% of discussions initiated by patients. These discussions were more likely to include assessment and normalizing and were less focused on intensifying symptom management. Symptom discussions were more likely with younger women and the time spent discussing symptoms decreased over subsequent visits for all women. CONCLUSIONS: Women who are symptomatic during treatment are not systematically queried about their symptoms, nor are women effectively reporting their symptoms. Attention should be directed at eliciting symptoms from older women; symptoms should be discussed throughout the duration of chemotherapy.

The Unique Symptom Burden of Patients Receiving CAR T-Cell Therapy.

OBJECTIVES: There is little research on the patient experience of symptom burden from CAR T-cell therapy, and no validated measure specific to the symptoms of CAR T-cell therapy currently exists. The purpose of this study was to identify symptoms experienced and to determine the content domain for a patient-reported outcome (PRO) measuring symptom burden for patients who had received standard of care CAR T-cell therapy for advanced B-cell lymphoid malignancies. DATA SOURCES: Semi-structured qualitative interviews were conducted with a sample of 21 patients who had received CAR T-cell therapy. Content analysis was used to define the symptom burden content domain. CONCLUSION: Sixty-two percent of patients were interviewed within 3 months of therapy; 81.0% experienced cytokine release syndrome and 28.6% experienced neurotoxicity. Content analysis found 31 symptoms related to disease and treatment. The most common disease-related symptom identified by patients was pain (43%). The most common symptoms identified by patients as related to CAR T-cell therapy included fatigue (tiredness) (62%), lack of appetite (29%), headache (29%), chills or feeling cold (24%), and feeling confused (24%). The qualitative analysis also confirmed that symptoms interfere with daily activities, work, walking, relationships with others, mood, and enjoyment of life. IMPLICATIONS FOR NURSING PRACTICE: Patients who receive standard CAR T-cell therapy experience numerous symptoms related to disease and CAR T-cell therapy, including symptoms related to the T-cell infusion. Symptoms may result in interference with daily activities, relationships, treatment adherence, and mood. Oncology nurses should be aware of and assess symptom related to CAR T-cell therapy.