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BACKGROUND: Patients with peritoneal carcinomatosis (PC) frequently undergo palliative procedures, yet these patients and their caregivers report being unprepared to manage ostomies, drains, and other complex care needs at home. The purpose of this study was to characterize the unique needs of these patients and their caregivers during care transitions. METHODS: Patients completed measures of health status and advance care planning, caregivers completed measures of preparedness and burden, and all participants completed measures of depression and anxiety. Participants detailed their experiences in individual, semi-structured interviews. We analyzed data using descriptive statistics and conventional content analysis. RESULTS: Sixty-one patients and 39 caregivers completed baseline measures. Twenty-four (39.3%) patients acknowledged their terminal illness and seven (11.5%) had discussed end-of-life care preferences with clinicians. Most (26/39, 66.7%) caregivers provided daily care. Among caregivers who managed symptoms, few were taught how to do so (6/20, 30%). Seven patients (11.5%) and seven caregivers (17.9%) met case criteria for anxiety, while 15 patients (24.6%) and two caregivers (5.1%) met case criteria for depression. Interview participants described a diagnosis of PC as a turning point for which there is no road map and identified the need for health systems change to minimize suffering. CONCLUSION: Patients with PC and their caregivers are highly burdened by symptoms and care needs. Patients' prognostic understanding and advance care planning are suboptimal. Interventions that train patients with PC and their caregivers to perform clinical care tasks, facilitate serious illness conversations, and provide psychosocial support are needed.
Subject(s)
Hospice Care , Peritoneal Neoplasms , Terminal Care , Humans , Caregivers/psychology , Palliative Care/methods , Peritoneal Neoplasms/therapy , Terminal Care/methodsABSTRACT
BACKGROUND: Peritoneal carcinomatosis (PC) is common in patients with advanced gynecologic and gastrointestinal cancers. Frequently, patients with PC undergo palliative surgery or procedures to manage disease-related complications and side effects. However, there are limited data regarding patients' and family caregivers' decision-making processes about these procedures. Thus, we sought to describe the decision-making experiences of patients with PC who elect to pursue palliative surgical procedures and their family caregivers. METHODS: We conducted a secondary analysis of qualitative data collected during a pilot randomized controlled trial of BOLSTER, a nurse-led telehealth intervention for patients with PC and their caregivers after an acute hospitalization and palliative procedure. Participants in both study arms described their experiences in semi-structured interviews. We re-analyzed coded qualitative data with a focus on understanding decision-making experiences surrounding palliative surgery and procedures using conventional content analysis. RESULTS: Interviews from 32 participants, 23 patients and 9 caregivers, were analyzed. Participants reported their decision-making was complicated by illness uncertainty and a desire for clear, effective communication with surgical and medical oncology teams. Participants requested more information about the impact of palliative procedures on their daily life. Several also noted that, without improved understanding, a misalignment between patient and family caregiver goals and palliative procedures may inadvertently increase suffering. CONCLUSION: Discussions related to patients' goals and preferences can improve the quality of treatment decision-making in patients with PC and their caregivers. Future research should test interventions to improve advanced cancer patients' illness understanding and decision-making surrounding palliative surgery and procedures.
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OBJECTIVE: Patients with advanced gynecologic (GYN) and gastrointestinal (GI) cancers frequently develop peritoneal carcinomatosis (PC), which limits prognosis and diminishes health-related quality of life (HRQoL). Palliative procedures may improve PC symptoms, yet patients and caregivers report feeling unprepared to manage ostomies, catheters, and other complex needs. Our objectives were to (1) assess the feasibility of an efficacy trial of a nurse-led telehealth intervention (BOLSTER) for patients with PC and their caregivers; and (2) assess BOLSTER's acceptability, potential to improve patients' HRQoL and self-efficacy, and potential impact on advance care planning (ACP). METHODS: Pilot feasibility RCT. Recently hospitalized adults with advanced GYN and GI cancers, PC, and a new complex care need and their caregivers were randomized 1:1 to BOLSTER or enhanced discharge planning (EDP). We defined feasibility as a ≥ 50% approach-to-consent ratio and acceptability as ≥70% satisfaction with BOLSTER. We assessed patients' HRQoL and self-efficacy at baseline and six weeks, then compared the proportion experiencing meaningful improvements by arm. ACP documentation was identified using natural language processing. RESULTS: We consented 77% of approached patients. In the BOLSTER arm, 91.0% of patients and 100.0% of caregivers were satisfied. Compared to EDP, more patients receiving BOLSTER experienced improvements in HRQoL (68.4% vs. 40.0%) and self-efficacy for managing symptoms (78.9% vs. 35.0%) and treatment (52.9% vs. 42.9%). The BOLSTER arm had more ACP documentation. CONCLUSIONS: BOLSTER is a feasible and acceptable intervention with the potential to improve patients' HRQoL and promote ACP. An efficacy trial comparing BOLSTER to usual care is underway. TRIAL REGISTRATION: ClinicalTrials.gov: NCT03367247; PI: Wright.
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Pathogenic and likely pathogenic variants in BRCA1 and BRCA2 (BRCA1/2) are medically actionable and may inform hereditary breast and ovarian cancer (HBOC) treatment and prevention. However, rates of germline genetic testing (GT) in people with and without cancer are suboptimal. Individuals' knowledge, attitudes, and beliefs may influence GT decisions. While genetic counseling (GC) provides decision support, the supply of genetic counselors is insufficient to meet demand. Accordingly, there is a need to explore the evidence on interventions that aim to support BRCA1/2 testing decisions. We conducted a scoping review of PubMed, CINAHL, Web of Science, and PsycINFO using search terms related to HBOC, GT, and decision making. First, we screened records to identify peer-reviewed reports that described interventions to support BRCA1/2 testing decisions. Next, we reviewed full-text reports and excluded studies that lacked statistical comparisons or enrolled previously tested individuals. Finally, we extracted study characteristics and findings into a table. All records and reports were reviewed independently by two authors; decisions were tracked in Rayyan, and discrepancies were resolved through discussion. Of 2116 unique citations, 25 met the eligibility criteria. Articles were published between 1997 and 2021 and described randomized trials and nonrandomized, quasi-experimental studies. Most studies tested technology-based (12/25, 48%) or written (9/25, 36%) interventions. Nearly half (12/25, 48%) of interventions were designed to complement traditional GC. Of the interventions compared to GC, 75% (6/8) increased or had a noninferior effect on knowledge, and 67% (4/6) decreased or had a noninferior effect on decisional conflict. Intervention effects on GT uptake were mixed, which may reflect evolving eligibility criteria for GT. Our findings suggest novel interventions may promote informed GT decision making, but many were developed to complement traditional GC. Trials that assess the effects of decision support interventions in diverse samples and evaluate implementation strategies for efficacious interventions are warranted.
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OBJECTIVE: To systematically review and synthesize the patient-clinician communication experiences of individuals with ovarian cancer. METHODS: The CINAHL, Embase, MEDLINE, PsycINFO, and Web of Science databases were reviewed for articles that described (a) original qualitative or mixed methods research, (b) the experiences of individuals with ovarian cancer, and (c) findings related to patient-clinician communication. Relevant data were extracted from study results sections, then coded for descriptive and analytical themes in accordance with Thomas and Harden's approach to thematic synthesis. Data were coded by two authors and discrepancies were resolved through discussion. RESULTS: Of 1,390 unique articles, 65 met criteria for inclusion. Four descriptive themes captured participants' experiences communicating with clinicians: respecting me, seeing me, supporting me, and advocating for myself. Findings were synthesized into three analytical themes: communication is analogous to caring, communication is essential to personalized care, and communication may mitigate or exacerbate the burden of illness. SIGNIFICANCE OF RESULTS: Patient-clinician communication is a process by which individuals with ovarian cancer may engage in self-advocacy and appraise the extent to which they are seen, respected, and supported by clinicians. Strategies to enhance patient-clinician communication in the ovarian cancer care setting may promote patient perceptions of patient-centered care.
Subject(s)
Ovarian Neoplasms , Female , Humans , Qualitative Research , Ovarian Neoplasms/complications , Patient-Centered Care , CommunicationABSTRACT
OBJECTIVE: Greater perceived patient-centered communication (PCC) is associated with better health-related quality of life (HRQoL) in patients with ovarian cancer. Quantitative measures of PCC and HRQoL do little to explain this association. We interviewed patients with high and low ratings of PCC to understand how it is associated with HRQoL. METHODS: Explanatory sequential mixed methods study. Participants were English-speaking U.S. adults with ovarian cancer. We assessed PCC with the Patient-Centered Communication - Cancer (PCC-Ca)-36 (possible score range 1-5; higher scores represent greater patient-centeredness), and purposively sampled 14 participants with total scores in the top and bottom quartiles. Participants completed individual, semi-structured interviews about their communication experiences. Guided by the National Cancer Institute Framework for PCC in Cancer Care, we analyzed interview transcripts using directed content analysis. We integrated survey and interview findings in a joint display. RESULTS: Among 176 survey respondents, PCC-Ca-36 total scores ranged from 1.7 to 5.0. Participants with scores in the top quartile (4.8-5.0) perceived clinicians as proactive and attentive to psychosocial concerns. Those with scores in the bottom quartile (1.7-3.5) described not feeling known as an individual and receiving limited support for self-management. CONCLUSIONS: The association between PCC and QoL may be partially explained by differences in perceived support for psychosocial concerns and self-management. PCC may facilitate receipt of proactive, personalized care.
Subject(s)
Ovarian Neoplasms , Quality of Life , Adult , Humans , Female , Patient-Centered Care/methods , Surveys and Questionnaires , Ovarian Neoplasms/therapy , CommunicationABSTRACT
BACKGROUND: Although treatment decisions for localized prostate cancer (LPC) are preference-sensitive, the extent to which individuals with LPC receive preference-concordant treatment is unclear. In a sample of individuals with LPC, the purpose of this study was to (a) assess concordance between the influence of potential adverse treatment outcomes and treatment choice; (b) determine whether receipt of a decision aid predicts higher odds of concordance; and (c) identify predictors of concordance from a set of participant characteristics and influential personal factors. METHODS: Participants reported the influence of potential adverse treatment outcomes and personal factors on treatment decisions at baseline. Preference-concordant treatment was defined as (a) any treatment if risk of adverse outcomes did not have a lot of influence, (b) active surveillance if risk of adverse outcomes had a lot of influence, or (c) radical prostatectomy or active surveillance if risk of adverse bowel outcomes had a lot of influence and risk of other adverse outcomes did not have a lot of influence. Data were analyzed using descriptive statistics and logistic regression. RESULTS: Of 224 participants, 137 (61%) pursued treatment concordant with preferences related to adverse treatment outcomes. Receipt of a decision aid did not predict higher odds of concordance. Low tumor risk and age ≥ 60 years predicted higher odds of concordance, while attributing a lot of influence to the impact of treatment on recreation predicted lower odds of concordance. CONCLUSIONS: Risk of potential adverse treatment outcomes may not be the foremost consideration of some patients with LPC. Assessment of the relative importance of patients' stated values and preferences is warranted in the setting of LPC treatment decision making. CLINICAL TRIAL REGISTRATION: NCT01844999 ( www. CLINICALTRIALS: gov ).
Subject(s)
Decision Making , Prostatic Neoplasms , Humans , Logistic Models , Male , Middle Aged , Prostatectomy , Prostatic Neoplasms/surgery , Treatment OutcomeABSTRACT
OBJECTIVE: In a sample of patients with gynecologic cancer receiving chemotherapy, we sought to identify subgroups of patients with distinct sleep disturbance profiles and assess for differences in patient characteristics and the severity of co-occurring symptoms among these subgroups. METHODS: Adults with gynecologic cancer (n = 232) completed questionnaires six times over two chemotherapy cycles. Sleep disturbance was assessed using the General Sleep Disturbance Scale (GSDS). Clinically meaningful sleep disturbance was defined as a GSDS total score of ≥43. Subgroups of patients with distinct sleep disturbance profiles were identified using latent profile analysis. Differences in patient characteristics and co-occurring symptoms were assessed using Chi-square, Kruskal Wallis, and one-way analysis of variance. RESULTS: Four distinct sleep disturbance profiles were identified: Low (18.5%), Moderate (43.6%), High (29.3%), and Very High (8.6%). Compared to the Low class, patients in the other three classes had lower functional status scores and higher levels of depressive symptoms, trait anxiety, and morning and evening fatigue. Compared to the Low class, patients in the Very High class were younger, had a higher body mass index, and were more likely to report a diagnosis of depression or back pain. CONCLUSIONS: Over 80% of the patients with gynecologic cancer reported sleep disturbance that persisted over two cycles of chemotherapy. Patients in the Very High class experienced problems with both sleep initiation and maintenance. Clinicians should routinely assess sleep disturbance alongside depression, anxiety, and fatigue. Interventions that target the underlying mechanisms of these co-occurring symptoms are warranted.
Subject(s)
Antineoplastic Combined Chemotherapy Protocols/adverse effects , Genital Neoplasms, Female/drug therapy , Sleep Wake Disorders/epidemiology , Adult , Age Factors , Aged , Female , Genital Neoplasms, Female/complications , Humans , Longitudinal Studies , Middle Aged , Prevalence , Risk Factors , Severity of Illness Index , Sleep Wake Disorders/diagnosis , Sleep Wake Disorders/etiology , Surveys and Questionnaires/statistics & numerical dataABSTRACT
OBJECTIVE: To describe perceptions of patient-centered communication (PCC); assess whether physician specialty, patient characteristics, or health system characteristics are associated with PCC; and identify associations between PCC, health-related quality of life (HRQoL), and symptom burden among individuals with ovarian cancer. METHODS: Cross-sectional, descriptive survey of English-speaking adults with ovarian cancer. PCC, HRQoL, and ovarian cancer symptom burden were assessed with the PCC-Ca-36, the FACT-G, and the FOSI-18, respectively. PCC-Ca-36 scores were summarized using descriptive statistics. Predictors of PCC-Ca-36, FACT-G, and FOSI-18 scores were identified using multiple linear regression. RESULTS: Participants (n = 176) had a mean age of 59.4 years (SD = 12.1). The majority (65.9%) had advanced-stage disease, while 42.0% were receiving treatment. The mean PCC-Ca-36 total score was 4.09 (SD = 0.78) out of a possible 5, indicating participants often perceived that clinicians engaged in PCC. Among the PCC functions, participants reported that clinicians least often enabled patient self-management (M = 3.65, SD = 0.99), responded to emotions (M = 3.84, SD = 1.04), and managed uncertainty (M = 3.91, SD = 0.93). In multivariable analyses, neither physician specialty nor patient and health system characteristics were significantly associated with overall PCC. Greater overall PCC predicted better overall HRQoL; better social/family, emotional, and functional well-being; and lower overall and physical symptom burden (all p ≤ 0.05). CONCLUSION: Greater PCC is significantly associated with better HRQoL and lower symptom burden among individuals with ovarian cancer. PRACTICE IMPLICATIONS: Promotion of PCC is a promising strategy to improve patient-reported outcomes in the ovarian cancer care setting.
Subject(s)
Cost of Illness , Ovarian Neoplasms/psychology , Patient Reported Outcome Measures , Physician-Patient Relations , Quality of Life , Aged , Communication , Cross-Sectional Studies , Female , Humans , Middle Aged , Ovarian Neoplasms/diagnosis , Ovarian Neoplasms/therapy , Patient-Centered Care , Qualitative Research , Self Report , UncertaintyABSTRACT
BACKGROUND: Decisional conflict is associated with decision quality and may affect decision outcomes. In the health sciences literature, the Decisional Conflict Scale is widely used to measure decisional conflict, yet limited research has described the psychometric properties of the Decisional Conflict Scale subscales and of the low literacy version of the scale. The purpose of this secondary data analysis was therefore to examine properties of the original (DCS-12) and low literacy (LL DCS-10) Decisional Conflict Scales using Classical Measurement Theory and Item Response Theory. METHODS: Data from two multi-site trials of men with prostate cancer were used to analyze the DCS-12, LL DCS-10, and an aggregated DCS-12 dataset in which five response options were aggregated into three. Internal consistency was estimated with Cronbach's alphas. Subscale correlations were evaluated with Pearson's correlation coefficient. Item difficulty, item discrimination, and test information were evaluated using Graded Response Modeling (GRM). The likelihood ratio test guided model selection. RESULTS: Cronbach's alphas for the total scales and three of four subscales were ≥ 0.85. Alphas ranged from 0.34-0.57 for the support subscales. Subscale correlations ranged from 0.42-0.71 (P < 0.001). Items on the DCS-12 exhibited the widest range of difficulty. Two items on the support subscale had low to moderate discrimination and contributed little information. Only the DCS-12 was informative across the full range of decisional conflict values. CONCLUSIONS: Lack of precision in the support subscale raises concerns about subscale validity. The DCS-12 is most capable of discriminating between respondents with high and low decisional conflict. Evaluation of interventions to reduce decisional conflict must consider the above findings.
Subject(s)
Clinical Decision-Making , Prostatic Neoplasms/therapy , Psychometrics/standards , Aged , Clinical Trials as Topic , Humans , Male , Middle Aged , Multicenter Studies as TopicABSTRACT
OBJECTIVE: To (a) determine what is known about the individual and contextual factors that may influence whether a woman with ovarian cancer receives guideline care, and (b) identify patient-centered research priorities in ovarian cancer. METHODS: A systematic review of the PubMed, MEDLINE, CINAHL Complete, and PsycInfo online databases. Eligible articles were published in English, described original research, and either (a) identified factors associated with the receipt of guideline care for ovarian cancer, or (b) described treatment decision making by women with ovarian cancer. Studies were excluded in which women with ovarian cancer did not comprise the entire sample of patient participants. Data were collected in accordance with Garrard's Matrix Method. Study quality was evaluated using the QualSyst tool for evaluating primary research papers. Relevant study findings were imported into NVivo Pro 11 for qualitative synthesis. RESULTS: The search strategy yielded 502 unique citations, of which 78 full-text articles were reviewed. Thirty-three articles met the criteria for inclusion. Study quality was high overall. Factors associated with the receipt of guideline care included race and ethnicity, socioeconomic status, insurance type, age, comorbidity, disease stage, tumor characteristics, hospital volume, hospital type, physician volume, and geographic location. Influences on treatment decision making among women with ovarian cancer included the desire to prolong survival, the patient-provider relationship, perceived ability to participate in the treatment decision, values and preferences, information needs, side effects, cost of care, and past experiences with chemotherapy. CONCLUSIONS: There is a need for further research that examines ovarian cancer treatment decision making from the perspective of the patient. Priority topics for future research may include the experiences of diverse women receiving treatment for ovarian cancer and the role of shared decision making with providers, referral networks, and practice patterns in the delivery of guideline care.
Subject(s)
Ovarian Neoplasms/therapy , Patient-Centered Care , Female , Humans , IndividualityABSTRACT
OBJECTIVES: Patient-centered communication (PCC) occurs when clinicians respond to patients' needs, preferences, and concerns. While PCC is associated with better health-related quality of life in patients with cancer, patients with ovarian cancer have reported unmet communication needs. We used design thinking to develop an intervention to promote PCC in ovarian cancer care. METHODS: Following the steps of design thinking, we empathized with stakeholders by reviewing the literature, then created stakeholder and journey maps to define the design challenge. To ideate solutions, we developed a challenge map. Finally, we developed wireframe prototypes and tested them with stakeholders. RESULTS: Empathizing revealed that misaligned visit priorities precipitated suboptimal communication. Defining the design challenge and ideating solutions highlighted the need to normalize preference assessments, promote communication self-efficacy, and enhance visit efficiency. The Collaborative Agenda-Setting Intervention (CASI) elicits patients' needs and preferences and delivers communication guidance at the point of care. Stakeholders approved of the prototype. CONCLUSION: Design thinking provided a systematic approach to empathizing with stakeholders, identifying challenges, and innovating solutions. PRACTICE IMPLICATIONS: To our knowledge, the CASI is the first intervention to set the visit agenda and support communication from within the electronic health record. Future research will assess its usability and acceptability.
Subject(s)
Ovarian Neoplasms , Quality of Life , Humans , Female , Ovarian Neoplasms/therapy , Patients , Patient-Centered Care , CommunicationABSTRACT
OBJECTIVE: To review the state of oncology nursing science as it pertains to big data. The authors aim to define and characterize big data, describe key considerations for accessing and analyzing big data, provide examples of analyses of big data in oncology nursing science, and highlight ethical considerations related to the collection and analysis of big data. DATA SOURCES: Peer-reviewed articles published by investigators specializing in oncology, nursing, and related disciplines. CONCLUSION: Big data is defined as data that are high in volume, velocity, and variety. To date, oncology nurse scientists have used big data to predict patient outcomes from clinician notes, identify distinct symptom phenotypes, and identify predictors of chemotherapy toxicity, among other applications. Although the emergence of big data and advances in computational methods provide new and exciting opportunities to advance oncology nursing science, several challenges are associated with accessing and using big data. Data security, research participant privacy, and the underrepresentation of minoritized individuals in big data are important concerns. IMPLICATIONS FOR NURSING PRACTICE: With their unique focus on the interplay between the whole person, the environment, and health, nurses bring an indispensable perspective to the interpretation and application of big data research findings. Given the increasing ubiquity of passive data collection, all nurses should be taught the definition, characteristics, applications, and limitations of big data. Nurses who are trained in big data and advanced computational methods will be poised to contribute to guidelines and policies that preserve the rights of human research participants.
Subject(s)
Big Data , Nursing Research , Humans , Medical Oncology , Nursing Research/methods , Oncology Nursing , Research PersonnelABSTRACT
OBJECTIVES: In a sample of patients with gynecologic cancers who are receiving chemotherapy, subgroups of patients with distinct state anxiety profiles were identified, and differences among the subgroups in demographic and clinical characteristics, stress, exposure to stressful life events, resilience, and coping behaviors were evaluated. DATA SOURCES: Patients (nâ¯=â¯230) completed questionnaires six times over two chemotherapy cycles. State anxiety was measured using the Spielberger State Anxiety Inventory. Subgroups of patients with distinct state anxiety profiles were identified using latent profile analysis. Differences among the classes were assessed using parametric and nonparametric tests. CONCLUSION: Three distinct state anxiety profiles were identified: low (55.2%), moderate (38.3%), and very high (6.5%). Compared with the low class, persons in the other two classes had lower functional status, more comorbidities, higher perceived stress, and lower resilience and were more likely to report a history of depression and to use disengagement coping strategies. Compared with the low class, the very high class was more likely to report childcare responsibilities; have a history of lung disease, stomach disease, or low back pain; have experienced physical neglect, serious money problems, a serious disaster, or foster care; or were a caregiver for someone with a severe disability. IMPLICATIONS FOR NURSING PRACTICE: Nearly 45% of patients reported clinically meaningful levels of state anxiety that persisted over two cycles of chemotherapy. Experiences with a variety of stressors may be risk factors for higher levels of anxiety during chemotherapy. Clinicians need to perform comprehensive social histories and assess for anxiety in patients receiving chemotherapy.
Subject(s)
Adaptation, Psychological , Neoplasms , Humans , Female , Anxiety , Comorbidity , Surveys and Questionnaires , Neoplasms/epidemiologyABSTRACT
In a sample of individuals with ovarian cancer, we aimed to (a) identify factors associated with the psychosocial impact of genetic counseling and multigene panel testing, (b) identify factors associated with cancer genetics knowledge, and (c) summarize patient-reported recommendations to improve the genetic counseling and multigene panel testing process. Eligible participants in this secondary analysis of quantitative and qualitative survey data were English-speaking adults with ovarian cancer. Psychosocial impact was assessed using the Multidimensional Impact of Cancer Risk Assessment (MICRA) questionnaire. Knowledge of cancer genetics was assessed using the KnowGene scale. Significant predictors of MICRA and KnowGene scores were identified using multiple regression. Open-ended survey item responses were analyzed using conventional content analysis. Eighty-seven participants met eligibility criteria. A positive genetic test result was associated with greater adverse psychosocial impact (B = 1.13, p = 0.002). Older age (B = - 0.07, p = 0.044) and being a member of a minority racial or ethnic group (B = - 3.075, p = 0.033) were associated with lower knowledge, while a personal history of at least one other type of cancer (B = 1.975, p = 0.015) was associated with higher knowledge. In open-ended item responses, participants wanted clinicians to assist with family communication, improve result disclosure, and enhance patient and family understanding of results. A subset of individuals with ovarian cancer who receive a positive genetic test result may be at risk for adverse psychosocial outcomes. Tailored cancer genetics education is necessary to promote the equitable uptake of targeted ovarian cancer treatment and risk-reducing therapies. Interventions to enhance patient-clinician communication in this setting are a research priority.
Subject(s)
Breast Neoplasms , Ovarian Neoplasms , Adult , Breast Neoplasms/genetics , Carcinoma, Ovarian Epithelial/genetics , Female , Genetic Counseling/psychology , Genetic Predisposition to Disease , Genetic Testing/methods , Humans , Ovarian Neoplasms/genetics , Ovarian Neoplasms/psychologyABSTRACT
OBJECTIVE: To assess the role of self-efficacy as a mediator of the association between patient-centred communication (PCC) and health-related quality of life (HRQoL) in a sample of participants with ovarian cancer. METHODS: English-speaking adults with ovarian cancer completed a cross-sectional survey. We assessed self-efficacy with the Self-Efficacy for Managing Chronic Disease scale, PCC with the Patient-Centred Communication in Cancer Care-36, and HRQoL with the Functional Assessment of Cancer Therapy-General. We used the PROCESS macro to calculate regression coefficients for the total effect of PCC on HRQoL and direct effect of PCC on HRQoL. We calculated a 95% CI for the indirect effect of PCC on HRQoL using 10 000 bootstrapped samples. RESULTS: The total effect of PCC on HRQoL (9.47, 95% CI 6.21 to 12.74) was greater than the direct effect of PCC on HRQoL (3.47, 95% CI 0.73 to 6.21). The indirect effect of PCC on HRQoL was 6.00 (95% CI 3.56 to 8.95). Self-efficacy explained approximately 63.4% of the association between PCC and HRQoL. CONCLUSIONS: Self-efficacy partially mediated the association between PCC and HRQoL. Self-efficacy is a potential target for communication interventions that aim to improve HRQoL. Research to validate this finding in the setting of a randomised trial is warranted.
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BACKGROUND: Patients with gynecologic cancer undergoing chemotherapy experience multiple co-occurring symptoms. Understanding how symptom clusters change over time is essential to the development of interventions that target multiple co-occurring symptoms. OBJECTIVE: The aim of this study was to assess the relative stability of symptom clusters across a chemotherapy cycle in patients with gynecologic cancer. METHODS: This is a longitudinal, descriptive study. Eligible patients (n = 232) were English-speaking adults (≥18 years old) with gynecologic cancer. Data were collected in the week before patients' second or third cycle of chemotherapy (T1) and at 1 (T2) and 2 (T3) weeks after chemotherapy. Three dimensions of the symptom experience (occurrence, severity, and distress) were assessed using a modified version of the Memorial Symptom Assessment Scale. Symptom clusters for each dimension and time point were identified through exploratory factor analysis. RESULTS: A 5-factor solution was selected for each exploratory factor analysis. Hormonal, respiratory, and weight change clusters were identified across all dimensions and time points. A psychological symptom cluster was identified at T1 for occurrence and severity and at T2 and T3 for all 3 dimensions. A gastrointestinal symptom cluster was identified at T1 for occurrence and at T2 and T3 for all 3 dimensions. The hormonal, respiratory, psychological, and weight change symptom clusters exhibited common symptoms across dimensions and time points. CONCLUSIONS: Hormonal, respiratory, weight change, and psychological symptom clusters are relatively stable across a cycle of chemotherapy in patients with gynecologic cancer. IMPLICATIONS FOR PRACTICE: Clinicians need to assess patients for multiple co-occurring symptoms and initiate multimodal interventions.
Subject(s)
Antineoplastic Agents , Genital Neoplasms, Female , Adolescent , Adult , Antineoplastic Agents/adverse effects , Factor Analysis, Statistical , Female , Genital Neoplasms, Female/drug therapy , Humans , Longitudinal Studies , SyndromeABSTRACT
Introduction: Peritoneal carcinomatosis (PC) afflicts women with advanced gynecologic cancers. Patients with PC often require ostomies, gastric tubes, or catheters to palliate symptoms, yet patients and caregivers report feeling unprepared to manage these devices. The purpose of this study was to develop and field test the Building Out Lifelines for Safety, Trust, Empowerment, and Renewal (BOLSTER) intervention to support patients and their caregivers after hospitalization for PC. Materials and Methods: We adapted components of the Standard Nursing Intervention Protocol with stakeholders and topical experts. We developed educational content; built a smartphone application to assess patients' symptoms; and assessed preliminary feasibility and acceptability in two single-arm prepilot studies. Eligible participants were English-speaking adults hospitalized for gynecologic cancer-associated PC and their caregivers. Feasibility criteria were a ≥50% consent-to-approach ratio and ≥80% outcome measure completion. The acceptability criterion was ≥70% of participants recommending BOLSTER. Results: During the first prepilot, BOLSTER was a 10-week intervention. While 7/8 (87.5%) approached patients consented, we experienced high attrition to hospice. Less than half of patients (3/7) and caregivers (3/7) completed outcome measures. For the second prepilot, BOLSTER was a four-week intervention. All (7/7) approached patients consented. Two withdrew before participating in any study activity because they were "too overwhelmed." We excluded data from one caregiver who completed baseline measures with the patient's assistance. All remaining patients (5/5) and caregivers (4/4) completed outcome measures and recommended BOLSTER. Conclusion: BOLSTER is a technology-enhanced, nurse-led intervention that is feasible and acceptable to patients with gynecologic cancer-associated PC and their caregivers.
Subject(s)
Genital Neoplasms, Female , Peritoneal Neoplasms , Adult , Caregivers , Feasibility Studies , Female , Hospitalization , Humans , Nurse's RoleABSTRACT
The coronavirus disease 2019 (COVID-19) pandemic has had a detrimental effect on research. However, little has been done to identify and solve the unique challenges faced by early career investigators (ECIs). As a group of American Cancer Society-funded ECIs, we provide recommendations for solving these challenges in the aftermath of the pandemic.
Subject(s)
COVID-19 , Career Mobility , Research Personnel , Work-Life Balance , Humans , Mentoring , Research Personnel/economics , Societies, ScientificABSTRACT
OBJECTIVES: To describe ratings of symptom occurrence, severity, and distress for 38 symptoms and to identify and compare the number and types of symptom clusters identified using these ratings. Although patients with gynecologic cancer experience multiple co-occurring symptoms, little is known about how these symptoms cluster together. SAMPLE & SETTING: Eligible patients (N = 232) had gynecologic cancer and were receiving chemotherapy. METHODS & VARIABLES: Symptoms were assessed using the Memorial Symptom Assessment Scale. Symptom clusters were identified through exploratory factor analysis. Geomin-rotated factor loadings with absolute values of 0.3 or greater were considered meaningful. Factor solutions (i.e., symptom clusters) were assessed for simple structure and clinical relevance. RESULTS: Lack of energy, hair loss, and "I don't look like myself" were the most common, severe, and distressing symptoms. Hormonal, respiratory, and weight change clusters were identified across all three dimensions. IMPLICATIONS FOR NURSING: Research that explores how symptom clusters change over time and their underlying mechanisms is warranted.