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1.
Gynecol Oncol ; 186: 211-215, 2024 Jun 07.
Article in English | MEDLINE | ID: mdl-38850766

ABSTRACT

OBJECTIVES: Minimally invasive surgery for treatment of gynecologic malignancies is associated with decreased pain, fewer complications, earlier return to activity, lower cost, and shorter hospital stays. Patients are often discharged the day of surgery, but occasionally stay overnight due to prolonged post-anesthesia care unit (PACU) stays. The objective of this study was to identify risk factors for prolonged PACU length of stay (LOS). METHODS: This is a single institution retrospective review of patients who underwent minimally invasive hysterectomy for gynecologic cancer from 2019 to 2022 and had a hospital stay <24-h. The primary outcome was PACU LOS. Demographics, pre-operative diagnoses, and surgical characteristics were recorded. After Box-Cox transformation, linear regression was used to determine significant predictors of PACU LOS. RESULTS: For the 661 patients identified, median PACU LOS was 5.04 h (range 2.16-23.76 h). On univariate analysis, longer PACU LOS was associated with increased age (ρ = 0.106, p = 0.006), non-partnered status [mean difference (MD) = 0.019, p = 0.099], increased alcohol use (MD = 0.018, p = 0.102), increased Charlson Comorbidity Index (CCI) score (ρ = 0.065, p = 0.097), and ASA class ≥3 (MD = 0.033, p = 0.002). Using multivariate linear regression, increased age (R2 = 0.0011, p = 0.043), non-partnered status (R2 = 0.0389, p < 0.001), and ASA class ≥3 (R2 = 0.0250, p = 0.023) were associated with increased PACU LOS. CONCLUSIONS: Identifying patients at risk for prolonged PACU LOS, including patients who are older, non-partnered, and have an ASA class ≥3, may allow for interventions to improve patient experience, better utilize hospital resources, decrease PACU overcrowding, and limit postoperative admissions and complications. The relationship between non-partnered status and PACU LOS is the most novel relationship identified in this study.

2.
Pain Manag Nurs ; 25(1): 56-61, 2024 Feb.
Article in English | MEDLINE | ID: mdl-37563052

ABSTRACT

BACKGROUND: Pain and mood disturbances, such as anxiety and depression, are common symptoms in gynecologic cancer. Their associations and the role of personality traits in pain adaptation during chemotherapy remain unclear. This ancillary data analysis aimed to investigate these relationships. AIM: To (1) depict the temporal trend of daily pain severity; (2) evaluate dynamic associations between mood and pain; and (3) explore personality traits (neuroticism and conscientiousness) as moderators of the mood-pain relationship during chemotherapy for gynecologic cancer. METHOD: Symptom severity was assessed daily throughout chemotherapy, while personality, clinical, and demographic characteristics were assessed at baseline. Twenty-seven women with gynecologic cancer who completed daily symptom assessments for at least four cycles were included in the analyses. RESULTS: Pain severity decreased slightly during chemotherapy. Multilevel modeling supported significant associations between pain and anxiety (b = 0.24, standard error [SE] = 0.06, p = .001) and depression (b = 0.30, SE = 0.08, p = .002). Time-varying effect modeling showed significant associations between anxiety and pain that initially increased and then decreased; and significant associations between depression and pain steadily decreased over the first four cycles of chemotherapy. Neuroticism moderated the association between anxiety and pain (b = 0.15, SE = 0.06, p < .05), with anxiety more strongly associated with pain in those with higher neuroticism. CONCLUSIONS: This study highlights the dynamic nature of pain and its associations with anxiety and depression in individuals with gynecologic cancer undergoing chemotherapy. The findings have implications for understanding pain and developing tailored psychosocial symptom management interventions to prevent pain during chemotherapy.


Subject(s)
Neoplasms , Pain , Humans , Female , Affect , Anxiety/psychology , Personality , Depression/etiology , Depression/psychology
3.
Psychooncology ; 33(1): e6269, 2024 Jan.
Article in English | MEDLINE | ID: mdl-38095337

ABSTRACT

OBJECTIVE: To develop and psychometrically evaluate an adapted version of the Female Self-Advocacy in Cancer Survivorship (FSACS) Scale in men with a history of cancer. METHODS: This psychometric instrument development and validation study used a two-phase approach to first adapt the FSACS Scale items to reflect the experience of men with a history of cancer and then evaluate the psychometric properties of the adapted scale compared to the original FSACS Scale. The study was conducted from December 2018 through April 2022 through cancer clinics, patient registries, and national advocacy organizations. We evaluated scale reliability and validity using reliability coefficients, exploratory and confirmatory factor analyses, and item analyses to determine a final set of scale items. RESULTS: Item responses from N = 171 men with a history of cancer were evaluated to determine scale validity. After removing poor-performing items based on item-level analyses, factor analyses confirmed that a 3-factor structure of both the adapted and original FSACS Scale best fit the scale. The 10 new items did not outperform the original 20-item scale and were therefore excluded from the final scale. The final 20-item scale explained 87.94% of item variance and subscale's Cronbach α varied from 0.65 to 0.86. CONCLUSION: The SACS Scale can be used in research and clinical contexts to assess the propensity of men and women to get their needs, values, and priorities met in the face of a challenge.


Subject(s)
Cancer Survivors , Neoplasms , Humans , Male , Female , Reproducibility of Results , Surveys and Questionnaires , Psychometrics
4.
J Palliat Med ; 26(12): 1644-1653, 2023 12.
Article in English | MEDLINE | ID: mdl-37831930

ABSTRACT

Background: Survivors of critical illness experience high rates of serious health-related suffering. The delivery of palliative care may assist in decreasing this burden for survivors and their families. Objectives: To understand beliefs, attitudes, and experiences of post-intensive care unit (ICU) program clinicians regarding palliative care and explore barriers and facilitators to incorporating palliative care into critical illness survivorship care. Design: Qualitative inquiry using semistructured interviews and framework analysis. Results were mapped using the Consolidated Framework for Implementation Research. Setting/Subjects: We interviewed 29 international members (United States, United Kingdom, Canada) of the Critical and Acute Illness Recovery Organization post-ICU clinic collaborative. Results: All interprofessional clinicians described components of palliative care as essential to post-ICU clinic practice, including symptom management, patient/family support, facilitation of goal-concordant care, expectation management and anticipatory guidance, spiritual support, and discussion of future health care wishes and advance care planning. Facilitators promoting palliative care strategies were clinician level, including first-hand experience, perceived value, and a positive attitude regarding palliative care. Clinician-level barriers were reciprocals and included insufficient palliative care knowledge, lack of self-efficacy, and a perceived need to protect ICU survivors from interventions the clinician felt may adversely affect recovery or change the care trajectory. System-level barriers included time constraints, cost, and lack of specialty palliative care services. Conclusion: Palliative care may be an essential element of post-ICU clinic care. Implementation efforts focused on tailoring strategies to improve post-ICU program clinicians' palliative care knowledge and self-efficacy could be a key to enhanced care delivery for survivors of critical illness.


Subject(s)
Critical Illness , Palliative Care , Humans , United States , Palliative Care/methods , Intensive Care Units , Critical Care , Survivors , Qualitative Research
5.
J Neurosci Nurs ; 55(6): 222-227, 2023 Dec 01.
Article in English | MEDLINE | ID: mdl-37782769

ABSTRACT

ABSTRACT: BACKGROUND: Negative physical health results from the emotional stress of providing care to a family member with a primary malignant brain tumor; however, the downstream effects on caregivers' healthcare utilization (HCU) are unknown. This analysis examined associations between caregivers' emotional health and markers of HCU during the 6 months after patients' diagnoses. METHODS: Caregivers' self-report HCU data from a longitudinal study with 116 neuro-oncology caregivers were analyzed. Healthcare utilization was operationalized as number of prescription medications, reporting visits to primary care providers (PCPs), nature of PCP visit, number of comorbid conditions, and change in comorbid conditions. Potential predictors were caregivers' depressive symptoms (Center for Epidemiologic Studies-Depression Scale), hours providing care per day, mastery (Pearlin and Schooler), and burden (Caregiver Reaction Assessment). Logistic mixed effects modeling were used. RESULTS : Caregivers with higher levels of depressive symptoms ( P < .01), anxiety ( P = .02), burden related to schedule ( P = .02), and abandonment ( P < .01) were more likely to report worsening comorbid conditions. Those with higher mastery ( P = .02) were less likely to report worsening comorbid conditions. Caregivers who had a PCP visit and reported higher burden related to feelings of self-esteem ( P = .03) were more likely to report an illness-related visit. CONCLUSION : Findings suggest a relationship between neuro-oncology caregivers' emotional health and their HCU. Data highlight the importance of caregivers' PCPs identifying caregivers at risk for deteriorating health and increased HCU and intervene to ensure caregivers' self-care.


Subject(s)
Brain Neoplasms , Caregivers , Humans , Caregivers/psychology , Longitudinal Studies , Depression/psychology , Family/psychology , Patient Acceptance of Health Care
6.
Cancer ; 129(19): 3034-3043, 2023 10 01.
Article in English | MEDLINE | ID: mdl-37243943

ABSTRACT

BACKGROUND: Cancer clinicians and systems aim to provide patient-centered care, but not all patients have the self-advocacy skills necessary to ensure their care reflects their needs and priorities. This study examines the feasibility, acceptability, and preliminary efficacy of a self-advocacy serious game (an educational video game) intervention in women with advanced breast or gynecologic cancer. METHODS: Women with recently diagnosed (<3 months) metastatic breast or advanced gynecologic cancer were randomized 2:1 to receive a tablet-based serious game (Strong Together) (n = 52) or enhanced care as usual (n = 26). Feasibility was based on recruitment, retention, data completion, and intervention engagement. Acceptability was assessed via a postintervention questionnaire and exit interview. Preliminary efficacy was assessed on the basis of change scores from baseline to 3 and 6 months in self-advocacy (Female Self-Advocacy in Cancer Survivorship Scale) using intention-to-treat analysis. RESULTS: Seventy-eight women (55.1% with breast cancer; 44.9% with gynecologic cancer) were enrolled. Feasibility was demonstrated by satisfactory recruitment (69% approach-to-consent rate; 93% enroll-to-randomize rate), retention (90% and 86% at 3 and 6 months, respectively; 85% data completion), and intervention engagement (84% completed ≥75% of the game). Participants endorsed the intervention's (75%) and trial's (87%) acceptability. Participants in the intervention group experienced significant improvements in self-advocacy at 3 and 6 months compared to participants in the control group. CONCLUSIONS: Strong Together is feasible and acceptable among women with advanced breast or gynecologic cancer. This intervention demonstrates promising evidence of clinical efficacy. A future confirmatory trial is warranted to test the efficacy of the intervention for patient and health system outcomes.


Subject(s)
Breast Neoplasms , Genital Neoplasms, Female , Humans , Female , Feasibility Studies , Breast Neoplasms/therapy , Breast Neoplasms/pathology , Genital Neoplasms, Female/therapy , Treatment Outcome , Surveys and Questionnaires
7.
Intensive Crit Care Nurs ; 75: 103362, 2023 Apr.
Article in English | MEDLINE | ID: mdl-36528461

ABSTRACT

OBJECTIVE: To examine the needs of adult survivors of critical illness through a lens of palliative care. RESEARCH METHODOLOGY: A qualitative study of adult survivors of critical illness using semi-structured interviews and framework analysis. SETTING: Participants were recruited from the post-intensive care unit clinic of a mid-Atlantic academic medical center in the United States. FINDINGS: Seventeen survivors of critical illness aged 34-80 (median, 66) participated in the study. The majority of patients were female (64.7 %, n = 11) with a median length of index ICU stay of 12 days (interquartile range [IQR] 8-19). Interviews were conducted February to March 2021 and occurred a median of 20 months following the index intensive care stay (range, 13-33 months). We identified six key themes which align with palliative care principles: 1) persistent symptom burden; 2) critical illness as a life-altering experience; 3) spiritual changes and significance; 4) interpreting/managing the survivor experience; 5) feelings of loss and burden; and 6) social support needs. CONCLUSION: Our findings suggest that palliative care components such as symptom management, goals of care discussions, care coordination, and spiritual and social support may assist in the assessment and treatment of survivors of critical illness.


Subject(s)
Critical Illness , Palliative Care , Adult , Humans , Male , Female , United States , Critical Illness/therapy , Intensive Care Units , Critical Care , Survivors , Qualitative Research
9.
Clin J Oncol Nurs ; 26(3): 239-243, 2022 06 01.
Article in English | MEDLINE | ID: mdl-35604742

ABSTRACT

Teaching patients with cancer the skill of self-advocacy shifts the focus of their cancer care onto what is important to them, leading to optimized patient-centered care. As oncology nurses, providing support to patients as they self-advocate to get their needs met fosters a collaborative relationship, creating an environment in which patients feel comfortable verbalizing their needs and concerns.


Subject(s)
Neoplasms , Nurse's Role , Oncology Nursing , Patient Advocacy , Humans , Neoplasms/nursing , Neoplasms/therapy , Nurse-Patient Relations , Nurses , Patient-Centered Care
10.
Crit Care Explor ; 4(4): e0676, 2022 Apr.
Article in English | MEDLINE | ID: mdl-35425905

ABSTRACT

OBJECTIVES: Spiritual and social support may be key facilitators for critical illness recovery and are identified as high priority for research. Understanding the prevalence of spiritual and social support needs in critical illness survivors may guide development of targeted interventions for support, which, in turn, may improve critical illness survivor quality of life. To characterize unmet spiritual and social support needs in critical illness survivors approximately 1 month after hospital discharge and examine the association of these needs with postintensive care syndrome (PICS)-related symptom burden. DESIGN: Retrospective, cross-sectional study. SETTING: University-affiliated hospital in Pittsburgh, PA. PATIENTS: One hundred ninety-six consecutive adult critical illness survivors seen during an initial post-ICU clinic visit from June 2018 to March 2020. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Patient-reported clinical outcome measures assessing spiritual and social support needs and PICS-related symptoms were extracted from the electronic health record. Patients had a median age of 61 (interquartile range [IQR], 51-68.5), and majority were male (55.1%) with a moderate comorbidity burden (Charlson comorbidity index median score, 3; IQR, 2-5). Social support and spiritual needs were prevalent. Of the 196 patients, over 50% reported unpreparedness/fearful for the future, half of patients reported not feeling in control of their care, and over one-third reported needing more support than their family, friends, or insurance can provide. Nearly 13% of respondents reported feeling abandoned or punished by God/not supported by their church/faith. Many patients reported overlapping PICS-related symptom domains (physical, psychologic, and cognitive). Univariate and multivariate analyses revealed associations between reported PICS-related symptoms and the presence of spiritual and social needs. CONCLUSIONS: Patients surviving critical illness experience significant social support and spiritual needs independent of commonly identified manifestations of PICS. These findings support the need for formal assessment and tailored interventions for social support and spiritual needs in critical illness survivors.

11.
J Clin Oncol ; 40(13): 1464-1473, 2022 05 01.
Article in English | MEDLINE | ID: mdl-35130043

ABSTRACT

PURPOSE: GOG-259 was a 3-arm randomized controlled trial of two web-based symptom management interventions for patients with recurrent ovarian cancer. Primary aims were to compare the efficacy of the nurse-guided (Nurse-WRITE) and self-directed (SD-WRITE) interventions to Enhanced Usual Care (EUC) in improving symptoms (burden and controllability) and quality of life (QOL). METHODS: Patients with recurrent or persistent ovarian, fallopian, or primary peritoneal cancer with 3+ symptoms were eligible for the study. Participants completed baseline (BL) surveys (symptom burden and controllability and QOL) before random assignment. WRITE interventions lasted 8 weeks to develop symptom management plans for three target symptoms. All women received EUC: monthly online symptom assessment with provider reports; online resources; and every 2-week e-mails. Outcomes were evaluated at 8 and 12 weeks after BL. Repeated-measures modeling with linear contrasts evaluated group by time effects on symptom burden, controllability, and QOL, controlling for key covariates. RESULTS: Participants (N = 497) reported mean age of 59.3 ± 9.2 years. At BL, 84% were receiving chemotherapy and reported a mean of 14.2 ± 4.9 concurrent symptoms, most commonly fatigue, constipation, and peripheral neuropathy. Symptom burden and QOL improved significantly over time (P < .001) for all three groups. A group by time interaction (P < .001) for symptom controllability was noted whereby both WRITE intervention groups had similar improvements from BL to 8 and 12 weeks, whereas EUC did not improve over time. CONCLUSION: Both WRITE Intervention groups showed significantly greater improvements in symptom controllability from BL to 8 and BL to 12 weeks compared with EUC. There were no significant differences between Nurse-WRITE and SD-WRITE. SD-WRITE has potential as a scalable intervention for a future implementation study.


Subject(s)
Ovarian Neoplasms , Quality of Life , Aged , Carcinoma, Ovarian Epithelial , Fatigue , Female , Humans , Middle Aged , Ovarian Neoplasms/drug therapy , Palliative Care , Symptom Assessment
12.
Cancer Nurs ; 45(5): 369-377, 2022.
Article in English | MEDLINE | ID: mdl-35025773

ABSTRACT

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.


Subject(s)
Genital Neoplasms, Female , Female , Genital Neoplasms, Female/drug therapy , Humans , Palliative Care , Patient Reported Outcome Measures , Self Report
13.
Cancer Nurs ; 45(5): 363-368, 2022.
Article in English | MEDLINE | ID: mdl-34608049

ABSTRACT

BACKGROUND: Glioblastoma multiforme (GBM) is an aggressive brain tumor. Patients commonly rely on family caregivers for physical and emotional support. We previously demonstrated that caregiver mastery measured shortly after diagnosis was predictive of GBM patient survival, corrected for known predictors of survival (n = 88). OBJECTIVE: The aims of this study were to verify the contribution of caregiver mastery and investigate the added value of mastery over other predictors to predict 15-month survival. METHODS: Data collected for a longitudinal study (NCT02058745) were used. Multivariable Cox regression analyses were performed for models with known clinical predictors (patient age, Karnofsky Performance Status, type of surgery, O6-methylguanine-DNA-methyltransferase promotor methylation status), with and without adding caregiver mastery to predict mortality. The added value of each model in discriminating between patients with the lowest and highest chances of survival at 15 months was investigated through Harrell's concordance index. RESULTS: In total, 41 caregiver-patient dyads were included. When evaluating solely clinical predictors, Karnofsky Performance Status and patient age were significant predictors of mortality (hazard ratio [HR], 0.974; 95% confidence interval [CI], 0.949-1.000; and HR, 1.045; 95% CI, 1.002-1.091, respectively). Adding caregiver mastery, these clinical predictors remained statistically significant, and mastery showed an HR of 0.843 (95% CI, 0.755-0.940). The discriminative value improved from C = 0.641 (model with known clinical predictors) to C = 0.778 (model with mastery), indicating the latter is superior. CONCLUSIONS: We confirm that caregiver mastery is associated with GBM patient survival. IMPLICATIONS FOR PRACTICE: Incorporating support and guidance for caregivers into standard care could lead to benefits for caregiver well-being and patient outcomes.


Subject(s)
Brain Neoplasms , Glioblastoma , Caregivers/psychology , Glioblastoma/pathology , Humans , Longitudinal Studies
14.
Support Care Cancer ; 30(3): 2059-2068, 2022 Mar.
Article in English | MEDLINE | ID: mdl-34655326

ABSTRACT

PURPOSE: Patients with primary malignant brain tumors have high symptom burden and commonly rely on family caregivers for practical and emotional support. This can lead to negative mental and physical consequences for caregivers. We investigated effectiveness of an 8-week nurse-led online needs-based support program (SmartCare©) with and without online self-guided cognitive behavioral therapy (CBT) for depression compared to enhanced care as usual (ECAU) on depressive symptoms, caregiving-specific distress, anxiety, mastery, and burden. METHODS: Family caregivers scoring ≥ 6 on a depressive symptoms inventory were randomized to three groups: ECAU plus self-guided CBT and SmartCare©; ECAU plus SmartCare©; ECAU only. Primary outcomes (depressive symptoms; caregiving-specific distress) and secondary outcomes (anxiety, caregiver mastery, and caregiver burden) were assessed online. Intention to treat (ITT) and per protocol (PP) analyses of covariance corrected for baseline scores were performed for outcomes at 4 months. RESULTS: In total, 120 family caregivers participated. Accrual and CBT engagement were lower than expected, therefore intervention groups were combined (n = 80) and compared to ECAU (n = 40). For depressive symptoms, no statistically significant group differences were found. Caregiving-specific distress decreased in the intervention group compared with ECAU (ITT: p = 0.01, partial ɳ2 = 0.08; PP: p = 0.02, partial ɳ2 = 0.08). A trend towards improvement in mastery for the intervention group compared with ECAU was identified (ITT: p = 0.08, partial ɳ2 = 0.04; PP: p = 0.07, partial ɳ2 = 0.05). CONCLUSIONS: SmartCare©, with or without self-guided CBT, reduced caregiving-specific distress with a trend towards improving mastery. SmartCare© has the potential to improve the lives of families coping with a brain tumor diagnosis. TRIAL REGISTRATION NUMBER: NCT02058745; 10 February 2014.


Subject(s)
Brain Neoplasms , Cognitive Behavioral Therapy , Adaptation, Psychological , Anxiety/therapy , Caregivers , Humans , Quality of Life
15.
Support Care Cancer ; 29(5): 2423-2434, 2021 May.
Article in English | MEDLINE | ID: mdl-32918611

ABSTRACT

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.


Subject(s)
Caregivers/psychology , Delivery of Health Care/methods , Neoplasms/therapy , Stakeholder Participation/psychology , Aged , Female , Humans , Male , Neoplasms/psychology
16.
ANS Adv Nurs Sci ; 44(1): E1-E13, 2021.
Article in English | MEDLINE | ID: mdl-33181568

ABSTRACT

Researchers define self-advocacy as the ability of an individual with cancer to overcome challenges in getting their preferences, needs, and values met. While imperative in all health care settings, self-advocacy is especially important in cancer care. The goal of this article is to present a conceptual framework for self-advocacy in cancer. We review foundational studies in self-advocacy, define the elements of the conceptual framework, discuss underlying assumptions of the framework, and suggest future directions in this research area. This framework provides an empirical and conceptual basis for studies designed to understand and improve self-advocacy among women with cancer.


Subject(s)
Neoplasms , Patient Advocacy , Female , Humans
17.
JCO Oncol Pract ; 16(3): e264-e270, 2020 03.
Article in English | MEDLINE | ID: mdl-31496394

ABSTRACT

PURPOSE: A needs assessment of family caregivers (CGs) in our gynecologic oncology clinic found that 50% of CGs report nine or more distressing unmet needs, but only 19% of patients had a documented CG. We conducted an ASCO Quality Training Program project with the following aims: (1) to identify and document primary CGs for 85% of patients within two clinic visits of a gynecologic cancer diagnosis, and (2) assess the needs of and provide interventions to 75% of identified family CGs. METHODS: Plan-Do-Study-Act (PDSA) methodology and tools endorsed by the ASCO Quality Training Program were used. An interprofessional team reviewed baseline data (ie, any mention of a family CG in the electronic health record visit note; CG distress survey), defined the problem and project aims, created process maps, and identified root causes of poor CG identification and documentation. Eight successive PDSA cycles were implemented between October 2018 and March 2019 to address identified root causes. RESULTS: For aim 1, CG identification increased from 19% at baseline to 57% postimplementation, whereas for aim 2, assessment improved from 28% at baseline to 60% postimplementation. Results fell somewhat short of initial goals, but they represent an important initial improvement in care. The core team has begun additional PDSA cycles to improve CG identification rates and extend the momentum of the project. CONCLUSION: This project demonstrated that a CG assessment protocol can be implemented in a large, academic, gynecologic oncology clinic. Additional efforts to integrate CG identification, assessment, and intervention more fully within the clinic and electronic health record are under way.


Subject(s)
Caregivers/standards , Genital Neoplasms, Female/therapy , Female , Humans , Male
18.
Psychooncology ; 29(3): 507-516, 2020 03.
Article in English | MEDLINE | ID: mdl-31733024

ABSTRACT

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.


Subject(s)
Cancer Survivors/psychology , Health Behavior , Neoplasms, Multiple Primary/psychology , Social Support , Stress, Psychological/psychology , Adult , Body Mass Index , Cross-Sectional Studies , Female , Health Status , Humans , Male , Middle Aged , Risk Factors , Self-Management , Socioeconomic Factors , Surveys and Questionnaires
19.
J Nurs Meas ; 27(2): 162-176, 2019 08 01.
Article in English | MEDLINE | ID: mdl-31511403

ABSTRACT

BACKGROUND AND PURPOSE: The informal care demands of primary malignant brain tumor (PMBT) patients include unique issues associated with neurological and cognitive symptoms. Existing caregiver needs questionnaires do not include these disease-specific symptoms, which are particularly distressing. Therefore, we have developed the neuro-oncology Caregiver Needs Screen (CNS) and evaluated its psychometric properties. METHODS: The 32-item instrument was developed based on PMBT caregiver interviews (N = 109) and expert review. The CNS was tested along measures of depression, anxiety, burden, and mastery in 122 PMBT caregivers. Principal components analysis was used to examine item properties and internal structure. Internal consistency reliability and construct validity were assessed. RESULTS: Six subscales were identified with internal consistency ranging between alpha = .653 and .857. Convergent validity was verified by moderate/high correlations between measures of caregiver well-being and CNS scale scores. CONCLUSIONS: Findings provide preliminary evidence of reliability and validity for the CNS. This instrument can be useful when assessing caregivers' needs for supportive care.


Subject(s)
Adaptation, Psychological , Brain Neoplasms/nursing , Caregivers/psychology , Family/psychology , Health Services Needs and Demand , Psychometrics/methods , Stress, Psychological/psychology , Adult , Female , Humans , Male , Middle Aged , Principal Component Analysis , Randomized Controlled Trials as Topic , Reproducibility of Results
20.
Semin Oncol Nurs ; 35(2): 192-201, 2019 Apr.
Article in English | MEDLINE | ID: mdl-30867102

ABSTRACT

OBJECTIVE: To define important aspects of survivorship care for the more than 1.2million survivors of gynecologic cancer currently living in the US. DATA SOURCES: Research articles, reviews, position statements and white papers, and evidence-based guidelines. CONCLUSION: Survivorship care includes a coordinated plan of care, ongoing surveillance, health promotion support, and management of long-term and late effects of treatment. IMPLICATIONS FOR NURSING PRACTICE: Nurses need to be aware of the current guidelines for post-treatment surveillance and health promotion recommendations for survivors of gynecologic cancers. Early identification of long-term and late effects of treatment followed by coordinated medical intervention and self-management education are essential to improve quality of life.


Subject(s)
Genital Neoplasms, Female/nursing , Survivorship , Female , Genital Neoplasms, Female/complications , Genital Neoplasms, Female/physiopathology , Genital Neoplasms, Female/therapy , Humans , Life Style , Practice Guidelines as Topic , Quality of Life , United States
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