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1.
Gynecol Oncol ; 188: 125-130, 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38954989

RESUMO

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.

2.
Oncol Nurs Forum ; 51(4): 292-293, 2024 Jun 14.
Artigo em Inglês | MEDLINE | ID: mdl-38950097

RESUMO

Precision health is an emerging approach to predicting, preventing, treating, and managing disease. A goal of precision health symptom science research is the reliable prediction of patients' symptom burden to optimize robu.


Assuntos
Neoplasias , Enfermagem Oncológica , Medicina de Precisão , Humanos , Enfermagem Oncológica/normas , Enfermagem Oncológica/métodos , Medicina de Precisão/métodos , Neoplasias/enfermagem , Feminino , Pessoa de Meia-Idade , Masculino , Adulto , Idoso , Avaliação de Sintomas/métodos
3.
Gynecol Oncol ; 188: 1-7, 2024 Jun 07.
Artigo em Inglês | MEDLINE | ID: mdl-38851039

RESUMO

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.

4.
Semin Oncol Nurs ; 40(3): 151644, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38692969

RESUMO

OBJECTIVES: Evidence suggests that energy is a distinct symptom from fatigue in patients with cancer. The purpose of this paper is to present the Multidimensional Model of Energy in Patients with Cancer (MMEPC) that is based on emerging evidence and to make recommendations for clinical practice and future research. METHODS: The literature was reviewed to determine various factors associated with variations in energy in patients with cancer. In addition, some of the emerging evidence in the model is supported by studies of energy in the general population and in patients with other chronic conditions. RESULTS: Based on a review of the literature, specific concepts in the MMEPC include: person factors, clinical factors, cancer-related factors, biological factors, factors associated with energy balance, and co-occurring symptoms. The evidence to support the association between each of these factors and variations in energy levels in patients with cancer is described and synthesized. CONCLUSION: This article provides emerging evidence on factors that influence variations in energy levels in patients with cancer. While the fundamental biobehavioral and biologic mechanisms that underlie variations in energy levels are not well understood, the model can be used to design pre-clinical and clinical studies of energy in patients with cancer. In addition, while emerging evidence supports the hypothesis that fatigue and energy are distinct symptoms, additional research on common and distinct risk factors and underlying mechanisms is warranted to be able to develop and test precision interventions for one or both symptoms. IMPLICATIONS FOR NURSING PRACTICE: The risk factors (eg, being female, sleep quality) associated with variations in energy levels in patients with cancer identified in this paper have important clinical implications. Clinicians can use the identified risk factors to guide their assessments; identify high-risk patients with decrements in energy decrement; and develop targeted energy conservation interventions for the patients.


Assuntos
Fadiga , Neoplasias , Humanos , Neoplasias/complicações , Metabolismo Energético/fisiologia
5.
Semin Oncol Nurs ; 40(1): 151572, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38246840

RESUMO

OBJECTIVE: Patients with gynecologic cancers experience a very high symptom burden that has a negative impact on their quality of life. This systematic review aims to identify the common co-occurring symptoms, the prevalence of common symptoms, common instruments used to measure symptoms, associated risk factors, and the symptom burden in patients with gynecologic cancers. DATA SOURCES: A search of four databases (ie, PubMed, Embase, Web of Science, and CINAHL) was done from January 1, 2012, through September 5, 2022. A qualitative synthesis of the extant literature was performed using Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines (PRISMA 2020). CONCLUSION: A total of 118 studies met the prespecified inclusion criteria. Ninety-six symptoms were assessed across these studies. The top six symptoms and their grand mean prevalence rates were lack of energy (64.4%), fatigue (62.1%), abdominal pain (53.3%), depression (52.6%), concentration dysfunction (52.0%), and drowsiness (51.9%). Numerous methodologic challenges were evident across studies. Future research needs to develop a disease-specific symptom assessment measure, evaluate for risk factors associated with a higher symptom burden, and determine the impact of multiple symptoms on patient outcomes. IMPLICATION FOR NURSING PRACTICE: The results are relevant for oncology clinicians to assess patients with gynecologic cancers for the presence of common symptoms and risk factors for higher symptom burden in the patients and to offer effective management interventions.

6.
BMJ Support Palliat Care ; 13(e3): e1351-e1362, 2024 Jan 08.
Artigo em Inglês | MEDLINE | ID: mdl-37541779

RESUMO

OBJECTIVES: In a sample of patients with cancer (n=1145) who were assessed during the height of the COVID-19 pandemic, latent profile analysis was used to identify subgroups of patients with distinct stress profiles and to evaluate for differences in demographic and clinical characteristics and symptom severity scores among these subgroups. METHODS: Patients completed measures of cancer-specific and COVID-19 stress, global stress, social isolation, loneliness, depression, state and trait anxiety, morning and evening fatigue, morning and evening energy, sleep disturbance, cognitive function, and pain. Latent profile analysis was used to identify subgroups of patients with distinct stress profiles. Differences among the subgroups in study measures were evaluated using parametric and non-parametric tests. RESULTS: Using clinically meaningful cut-off scores for the stress measures, four distinct stress profiles were identified (ie, none class (51.3%); low stress and moderate loneliness class (24.4%), high stress and moderate loneliness class (14.0%), and very high stress and moderately high loneliness class (high, 10.3%)). Risk factors associated with membership in the high class included: younger age, lower annual household income, lower functional status and higher comorbidity burden. The two worst stress profiles reported clinically meaningful levels of all of the common symptoms associated with cancer and its treatments. CONCLUSION: Findings from this study, obtained prior to the availability of COVID-19 vaccines and anti-viral medications, provide important 'benchmark data' to evaluate for changes in stress and symptom burden in patients with cancer in the postvaccine era and in patients with long COVID-19.


Assuntos
COVID-19 , Neoplasias , Humanos , COVID-19/epidemiologia , Carga de Sintomas , Vacinas contra COVID-19 , Pandemias , Síndrome de COVID-19 Pós-Aguda , Neoplasias/complicações , Neoplasias/epidemiologia , Neoplasias/diagnóstico , Fadiga/epidemiologia , Fadiga/etiologia
7.
Patient Educ Couns ; 120: 108099, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38086227

RESUMO

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.


Assuntos
Neoplasias Ovarianas , Qualidade de Vida , Humanos , Feminino , Neoplasias Ovarianas/terapia , Pacientes , Assistência Centrada no Paciente , Comunicação
8.
Gynecol Oncol ; 181: 68-75, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38141533

RESUMO

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.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Neoplasias Peritoneais , Assistência Terminal , Humanos , Cuidadores/psicologia , Cuidados Paliativos/métodos , Neoplasias Peritoneais/terapia , Assistência Terminal/métodos
9.
Oncol Nurs Forum ; 50(5): 647-664, 2023 08 17.
Artigo em Inglês | MEDLINE | ID: mdl-37677766

RESUMO

OBJECTIVES: To evaluate for subgroups of patients with distinct symptom profiles and differences in demographic and clinical characteristics and stress and resilience among these subgroups. SAMPLE & SETTING: 1,145 patients with cancer aged 18 years or older completed a survey online. Data were collected between May 2020 and February 2021. METHODS & VARIABLES: Patients completed measures for depression, state anxiety, cognitive function, morning fatigue, evening fatigue, morning energy, evening energy, sleep disturbance, pain, stress, and resilience. Latent class profile analysis was used to identify subgroups of patients with distinct symptom profiles. Differences among the subgroups on study measures were evaluated using parametric and nonparametric tests. RESULTS: Four distinct profiles were identified (none, low, high, and very high). Patients in the high and very high classes reported clinically meaningful levels of all nine symptoms. Differences among the four profiles for stress and resilience exhibited a dose-response effect. IMPLICATIONS FOR NURSING: Findings can serve as benchmark data of the symptom burden of patients with cancer following the COVID-19 pandemic.


Assuntos
COVID-19 , Neoplasias , Humanos , Pandemias , Fatores de Risco , Fadiga/etiologia
10.
Support Care Cancer ; 31(8): 485, 2023 Jul 22.
Artigo em Inglês | MEDLINE | ID: mdl-37480403

RESUMO

PURPOSE: Pain, fatigue, sleep disturbance, and depression are four of the most common symptoms in patients with gynecologic cancer. The purposes were to identify subgroups of patients with distinct co-occurring pain, fatigue, sleep disturbance, and depression profiles (i.e., pre-specified symptom cluster) in a sample of patients with gynecologic cancer receiving chemotherapy and assess for differences in demographic and clinical characteristics, as well as the severity of other common symptoms and QOL outcomes among these subgroups. METHODS: Patients completed symptom questionnaires prior to their second or third cycle of chemotherapy. Latent profile analysis was used to identify subgroups of patients using the pre-specified symptom cluster. Parametric and nonparametric tests were used to evaluate for differences between the subgroups. RESULTS: In the sample of 233 patients, two distinct latent classes were identified (i.e., low (64.8%) and high (35.2%)) indicating lower and higher levels of symptom burden. Patients in high class were younger, had child care responsibilities, were unemployed, and had a lower annual income. In addition, these women had a higher body mass index, a higher comorbidity burden, and a lower functional status. Patients in the high class reported higher levels of anxiety, as well as lower levels of energy and cognitive function and poorer quality of life scores. CONCLUSIONS: This study identified a number of modifiable and non-modifiable risk factors associated with membership in the high class. Clinicians can use this information to refer patients to dieticians and physical therapists for tailored interventions.


Assuntos
Neoplasias dos Genitais Femininos , Qualidade de Vida , Humanos , Feminino , Síndrome , Fadiga/epidemiologia , Fadiga/etiologia , Neoplasias dos Genitais Femininos/complicações , Dor
11.
J Genet Couns ; 2023 Jun 16.
Artigo em Inglês | MEDLINE | ID: mdl-37328917

RESUMO

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.

12.
Semin Oncol Nurs ; 39(4): 151431, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37164885

RESUMO

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 (n = 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.


Assuntos
Adaptação Psicológica , Neoplasias , Humanos , Feminino , Ansiedade , Comorbidade , Inquéritos e Questionários , Neoplasias/epidemiologia
13.
Semin Oncol Nurs ; 39(3): 151428, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-37085404

RESUMO

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.


Assuntos
Big Data , Pesquisa em Enfermagem , Humanos , Oncologia , Pesquisa em Enfermagem/métodos , Enfermagem Oncológica , Pesquisadores
14.
Palliat Support Care ; 21(3): 515-533, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-35582975

RESUMO

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.


Assuntos
Neoplasias Ovarianas , Feminino , Humanos , Pesquisa Qualitativa , Neoplasias Ovarianas/complicações , Assistência Centrada no Paciente , Comunicação
15.
Artigo em Inglês | MEDLINE | ID: mdl-36376058

RESUMO

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.

16.
Gynecol Oncol ; 167(2): 261-268, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-36057465

RESUMO

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.


Assuntos
Neoplasias Ovarianas , Qualidade de Vida , Adulto , Humanos , Feminino , Assistência Centrada no Paciente/métodos , Inquéritos e Questionários , Neoplasias Ovarianas/terapia , Comunicação
17.
BMC Med Inform Decis Mak ; 22(1): 223, 2022 08 24.
Artigo em Inglês | MEDLINE | ID: mdl-36002847

RESUMO

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 ).


Assuntos
Tomada de Decisões , Neoplasias da Próstata , Humanos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Prostatectomia , Neoplasias da Próstata/cirurgia , Resultado do Tratamento
18.
J Palliat Med ; 25(9): 1367-1375, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35297744

RESUMO

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.


Assuntos
Neoplasias dos Genitais Femininos , Neoplasias Peritoneais , Adulto , Cuidadores , Estudos de Viabilidade , Feminino , Hospitalização , Humanos , Papel do Profissional de Enfermagem
19.
Fam Cancer ; 21(1): 35-47, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-33751319

RESUMO

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.


Assuntos
Neoplasias da Mama , Neoplasias Ovarianas , Adulto , Neoplasias da Mama/genética , Carcinoma Epitelial do Ovário/genética , Feminino , Aconselhamento Genético/psicologia , Predisposição Genética para Doença , Testes Genéticos/métodos , Humanos , Neoplasias Ovarianas/genética , Neoplasias Ovarianas/psicologia
20.
Cancer Nurs ; 45(4): E706-E718, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-34560709

RESUMO

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.


Assuntos
Antineoplásicos , Neoplasias dos Genitais Femininos , Adolescente , Adulto , Antineoplásicos/efeitos adversos , Análise Fatorial , Feminino , Neoplasias dos Genitais Femininos/tratamento farmacológico , Humanos , Estudos Longitudinais , Síndrome
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