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1.
JMIR Cancer ; 10: e52322, 2024 Mar 19.
Artigo em Inglês | MEDLINE | ID: mdl-38502171

RESUMO

BACKGROUND: People with cancer frequently experience severe and distressing symptoms associated with cancer and its treatments. Predicting symptoms in patients with cancer continues to be a significant challenge for both clinicians and researchers. The rapid evolution of machine learning (ML) highlights the need for a current systematic review to improve cancer symptom prediction. OBJECTIVE: This systematic review aims to synthesize the literature that has used ML algorithms to predict the development of cancer symptoms and to identify the predictors of these symptoms. This is essential for integrating new developments and identifying gaps in existing literature. METHODS: We conducted this systematic review in accordance with the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) checklist. We conducted a systematic search of CINAHL, Embase, and PubMed for English records published from 1984 to August 11, 2023, using the following search terms: cancer, neoplasm, specific symptoms, neural networks, machine learning, specific algorithm names, and deep learning. All records that met the eligibility criteria were individually reviewed by 2 coauthors, and key findings were extracted and synthesized. We focused on studies using ML algorithms to predict cancer symptoms, excluding nonhuman research, technical reports, reviews, book chapters, conference proceedings, and inaccessible full texts. RESULTS: A total of 42 studies were included, the majority of which were published after 2017. Most studies were conducted in North America (18/42, 43%) and Asia (16/42, 38%). The sample sizes in most studies (27/42, 64%) typically ranged from 100 to 1000 participants. The most prevalent category of algorithms was supervised ML, accounting for 39 (93%) of the 42 studies. Each of the methods-deep learning, ensemble classifiers, and unsupervised ML-constituted 3 (3%) of the 42 studies. The ML algorithms with the best performance were logistic regression (9/42, 17%), random forest (7/42, 13%), artificial neural networks (5/42, 9%), and decision trees (5/42, 9%). The most commonly included primary cancer sites were the head and neck (9/42, 22%) and breast (8/42, 19%), with 17 (41%) of the 42 studies not specifying the site. The most frequently studied symptoms were xerostomia (9/42, 14%), depression (8/42, 13%), pain (8/42, 13%), and fatigue (6/42, 10%). The significant predictors were age, gender, treatment type, treatment number, cancer site, cancer stage, chemotherapy, radiotherapy, chronic diseases, comorbidities, physical factors, and psychological factors. CONCLUSIONS: This review outlines the algorithms used for predicting symptoms in individuals with cancer. Given the diversity of symptoms people with cancer experience, analytic approaches that can handle complex and nonlinear relationships are critical. This knowledge can pave the way for crafting algorithms tailored to a specific symptom. In addition, to improve prediction precision, future research should compare cutting-edge ML strategies such as deep learning and ensemble methods with traditional statistical models.

2.
JCO Clin Cancer Inform ; 8: e2300039, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38471054

RESUMO

PURPOSE: Ability to predict symptom severity and progression across treatment trajectories would allow clinicians to provide timely intervention and treatment planning. However, such predictions are difficult because of sparse and inconsistent assessment, and simplistic measures such as the last observed symptom severity are often used. The purpose of this study is to develop a model for predicting future cancer symptom experiences on the basis of past symptom experiences. PATIENTS AND METHODS: We performed a retrospective, longitudinal analysis using records of patients with cancer (n = 208) hospitalized between 2008 and 2014. A long short-term memory (LSTM)-based recurrent neural network, a linear regression, and random forest models were trained on previous symptoms experienced and used to predict future symptom trajectories. RESULTS: We found that at least one of three tested models (LSTM, linear regression, and random forest) outperform predictions based solely on the previous clinical observation. LSTM models significantly outperformed linear regression and random forest models in predicting nausea (P < .1) and psychosocial status (P < .01). Linear regression outperformed all models when predicting oral health (P < .01), while random forest outperformed all models when predicting mobility (P < .01) and nutrition (P < .01). CONCLUSION: We can successfully predict patients' symptom trajectories with a prediction model, built with sparse assessment data, using routinely collected nursing documentation. The results of this project can be applied to better individualize symptom management to support cancer patients' quality of life.


Assuntos
Registros Eletrônicos de Saúde , Neoplasias , Humanos , Estudos Retrospectivos , Memória de Curto Prazo , Qualidade de Vida , Redes Neurais de Computação
3.
Clin Nurs Res ; : 10547738241232018, 2024 Feb 20.
Artigo em Inglês | MEDLINE | ID: mdl-38375791

RESUMO

Social determinants of health (SDOH) are structural factors that yield health inequities. Within the context of cancer, these inequities include screening rates and survival rates, as well as higher symptom burden during and after treatment. While pain is one of the most frequently reported symptoms, the relationship between SDOHs and cancer pain is not well understood. The purpose of this study is to describe and synthesize the published research that has evaluated the relationships between SDOH and cancer pain. A systematic search of PubMed, CINAHL, and Embase was conducted to identify studies in which cancer pain and SDOH were described. In all, 20 studies met the inclusion criteria. In total, 14 studies reported a primary aim related to SDOH and cancer pain. Demographic variables including education or income were used most frequently. Six specific measurements were utilized to measure SDOH, such as the acculturation scale, the composite measure of zip codes for poverty level and blight prevalence, or the segregation index. Among the five domains of SDOH based on Healthy People 2030, social and community was the most studied, followed by economic stability, and education access and quality. The neighborhood and built environment domain was the least studied. Despite increasing attention to SDOH, the majority of published studies use single-dimension variables derived from demographic data to evaluate the relationships between SDOH and cancer pain. Future research is needed to explore the intersectionality of SDOH domains and their impact on cancer pain. Additionally, intervention studies should be conducted to address existing disparities and to reduce the incidence and impact of cancer pain.

4.
Biol Res Nurs ; 26(2): 219-230, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37830211

RESUMO

BACKGROUND: Alterations in the naturally occurring bacteria of the gut, known as the gastrointestinal (GI) microbiome, may influence GI symptoms in women with breast cancer. OBJECTIVE: This work aims to describe GI symptom occurrence, duration, severity, and distress and measures of the GI microbiome among women with breast cancer receiving chemotherapy compared to age- and sex-matched healthy controls. INTERVENTIONS/METHODS: 22 women with breast cancer receiving chemotherapy and 17 healthy control women provided stool specimens and GI symptom data using the modified Memorial Symptom Assessment Scale (MSAS). The fecal microbiome was profiled by metagenomic sequencing of 16S Ribosomal RNA (rRNA). GI microbiome was compared between groups using alpha-diversity (Observed OTU number and Shannon index), beta-diversity (UniFrac distances), and relative abundance of select genera. RESULTS: GI symptoms with high symptom reports among breast cancer patients included nausea, diarrhea, flatulence, dry mouth, taste change, and poor appetite. Indices of differential abundance (beta diversity) significantly distinguished between breast cancer patients and healthy controls. Unique bacterial features differentiating the 2 groups were Prevotella_9, Akkermansia, Lachnospira, Lachnospiraceae_NK4A136, Lachnoclostridium, and Oscillibacter. CONCLUSIONS: Gut bacteria are associated with GI inflammation and mucus degradation, suggesting the potential role of the GI microbiome in GI symptom burden. Understanding the influence of GI bacteria on gut health and symptoms will help harness the enormous potential of the GI microbiome as a future diagnostic and therapeutic agent to reduce the symptom burden associated with chemotherapy.


Assuntos
Neoplasias da Mama , Microbioma Gastrointestinal , Humanos , Feminino , Microbioma Gastrointestinal/genética , Neoplasias da Mama/tratamento farmacológico , Carga de Sintomas , Trato Gastrointestinal/microbiologia , Fezes/microbiologia , Bactérias/genética
5.
Palliat Support Care ; : 1-8, 2023 Mar 24.
Artigo em Inglês | MEDLINE | ID: mdl-36960613

RESUMO

OBJECTIVES: This study aims to explore seriously ill patients' experiences during goals-of-care discussions and perspectives of end-of-life (EOL) decision-making in the Middle Eastern country of Jordan. METHODS: This is a qualitative descriptive study with semi-structured, one-on-one interviews. Settings were 2 large hospitals in Jordan. Patients were a purposeful sample of 14 Arabic-speaking adults who were seriously ill and hospitalized with palliative care needs. RESULTS: Conventional content analysis identified 4 main themes: perceived suffering during serious illness, attitudes toward discussing EOL decision-making, goals of care and preferences for EOL, and actions to enhance EOL decision-making. Disease and treatment burdens and concerns about life, family, and death were sources of suffering during serious illness. What matters most to patients at EOL were alleviating suffering and getting support from family, friends, and care providers. Although patients expressed reluctance and inaction toward EOL decision-making due to uncertainties, lacking awareness, and assumptions of fear, their potential goals of care were to live longer, be with their families, and die with dignity. SIGNIFICANCE OF RESULTS: Jordanians and culturally similar Arabs could benefit from goals-of-care discussions. The proper, culturally sensitive implementation of goals-of-care discussions in Arab populations with similar cultural norms requires raising public awareness and clarifying the legitimacy of goals-of-care discussions, preparing patients and their families for the discussions, and considering individual variations in handling the discussions.

6.
PLoS One ; 18(1): e0280049, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36649225

RESUMO

COVID-19 has led to an unprecedented surge in unemployment associated with increased anxiety, stress, and loneliness impacting the well-being of various groups of people (based on gender and age). Given the increased unemployment rate, this study intends to understand if the different dimensions of well-being change across age and gender. By quantifying sentiment, stress, and loneliness with natural language processing tools and one-way, between-group multivariate analysis of variance (MANOVA) using Reddit data, we assessed the differences in well-being characteristics for age groups and gender. We see a noticeable increase in the number of mental health-related subreddits for younger women since March 2020 and the trigger words used by them indicate poor mental health caused by relationship and career challenges posed by the pandemic. The MANOVA results show that women under 30 have significantly (p = 0.05) higher negative sentiment, stress, and loneliness levels than other age and gender groups. The results suggest that younger women express their vulnerability on social media more strongly than older women or men. The huge disruption of job routines caused by COVID-19 alongside inadequate relief and benefit programs has wrecked the economy and forced millions of women and families to the edge of bankruptcy. Women had to choose between being home managers and financial providers due to the countrywide shutdown of schools and day-cares. These findings open opportunities to reconsider how policy supports women's responsibilities.


Assuntos
COVID-19 , Mulheres Trabalhadoras , Masculino , Humanos , Feminino , Idoso , Pandemias , COVID-19/epidemiologia , Saúde Mental , Análise de Variância
7.
Am J Hosp Palliat Care ; 40(10): 1049-1057, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-36448659

RESUMO

Introduction: Previous research has shown limited palliative care (PC) utilization among patients evaluated for liver transplantation (LT) despite the cohort's significant symptom burden, high frequency of hospitalization and risk of rapid decompensation. Our aim was to evaluate patient characteristics and end-of-life (EOL) outcomes (i.e. ICU utilization, code status, advance care planning) associated with the use of PC services in patients who were evaluated for LT. Methods: We performed a single-center cross-sectional study comprised of 223 deceased patients evaluated for LT between 1/1/2017 and 12/31/2021. We evaluated demographic characteristics and EOL outcomes for differences between patients who received PC consultation and those who did not. EOL outcomes associated with PC use were assessed using logistic and linear regression analysis adjusted for patient demographics. Results: Patients who received PC consultation were younger (mean 57 vs. 61; P = 0.048), had higher Model for end-stage Liver Disease (MELD) scores (27.5 vs. 22; P = 0.001), higher rates of hepatic encephalopathy (96% vs. 84%, P = 0.005), and were more frequently declined for LT (77% vs. 57%; P = 0.008). Patients who received PC services were less likely to die in the ICU (OR = 0.07 [0.02-0.18]) and were more likely to have documented advance care planning (OR = 3.16 [1.47-6.97]), family meetings (OR = 6.58 [2.72-17.08]), and goals-of-care discussions (OR = 14.83 [4.39-69.29]). Conclusion: For patients being evaluated for LT, PC utilization differed based on demographics, disease complications and severity, and transplant status. Those who received PC services had higher quality EOL care planning and fewer ICU admissions.


Assuntos
Doença Hepática Terminal , Transplante de Fígado , Assistência Terminal , Humanos , Cuidados Paliativos , Doença Hepática Terminal/cirurgia , Estudos Transversais , Índice de Gravidade de Doença , Morte , Estudos Retrospectivos
8.
J Palliat Med ; 25(12): 1865-1876, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-36178473

RESUMO

Although pain management is integral to the caregiving role, there is a paucity of evidence synthesizing specific challenges family caregivers (FCs) face when managing pain for their care partners. This review comprehensively identified and summarized such challenges in the setting of advanced illnesses. Electronic databases (PubMed, CINAHL, PsycINFO, Scopus, and Health and Psychosocial Instruments) were searched using index and keyword methods for all articles published before April 2021. Fifty-five studies were included in this review. Most articles were published within the last 10 years (54%) in community settings, with home hospice care comprising the majority (50%). Most studies included patients with an advanced cancer diagnosis (84%), and 16% of the studies included patients with a noncancer diagnosis. Four major categories of challenges were identified: (1) caregiver-related issues (e.g., fears, beliefs, function), (2) caregivers' limited knowledge and skills in pain management (e.g., verbal and nonverbal pain assessment skills, pharmacological knowledge, documentation, safe management of medication), (3) communication challenges with health care providers, and (4) patient-related issues (e.g., inability to report pain). Many of these challenges have not been fully addressed in prior literature. Thus, this review provides a framework for needed future research to develop interventions that target FCs' specific challenges in providing pain management. The results also highlight a significant lack of research surrounding challenges faced by caregivers of care partners having a noncancer, dementia, or multimorbidity diagnosis.


Assuntos
Cuidadores , Manejo da Dor , Humanos , Dor
9.
Oncol Nurs Forum ; 49(4): E17-E30, 2022 06 17.
Artigo em Inglês | MEDLINE | ID: mdl-35788741

RESUMO

PROBLEM IDENTIFICATION: The purpose of this integrative review is to identify literature describing (a) subgrouping patients with cancer based on symptom experiences and their patterns of symptom changes over time and (b) methodologies of subgrouping patients with cancer based on symptom experiences. LITERATURE SEARCH: PubMed®, CINAHL®, and PsycINFO® were searched through January 2019. DATA EVALUATION: Studies were appraised for patterns of symptom change over time and methodologic approach using the QualSyst quality rating scale. SYNTHESIS: 11 studies met inclusion criteria. Clinical variables that influence symptom patterns were diverse. The most common clustering method was latent variable analysis (73%), and all studies collected symptom data prospectively using survey analysis to assess symptoms. IMPLICATIONS FOR PRACTICE: The majority of studies (91%) observed that the symptom experience within the group of patients with cancer changed over time. Identifying groups of patients with similar symptom experiences is useful to determine which patients need more intensive symptom management over the trajectory of cancer treatment, which is essential to improve symptoms and quality of life.


Assuntos
Neoplasias , Qualidade de Vida , Humanos , Neoplasias/terapia , Cuidados Paliativos , Projetos de Pesquisa
10.
Pregnancy Hypertens ; 27: 110-114, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-34998224

RESUMO

Blood pressure is the key vital sign to detecting hypertensive disorders in pregnancy. The importance of taking blood pressure properly was recently underscored by the publication of updated ACC/AHA guidelines for measuring blood pressure in patients. However, the recommended position of seating with arms and back supported is not always feasible to achieve clinically, especially for inpatient women who are pregnant. Therefore, it is clinically important to understand the effects of alternative patient positioning on blood pressure measurements. We conducted a review of studies which considered patient position on the effect of blood pressure in pregnancy. This review demonstrates that clinically significant differences may occur based on patient positioning. Despite the small number of primary studies that include pregnant women, notable reductions in blood pressure measurements have been observed in the left lateral recumbent position, a common position during labor or during monitoring, in comparison to measurements taken in the supported seated position. Ultimately, these differences could affect the clinical management of patients and care should be taken to document and consider the position in which the reading was taken.


Assuntos
Determinação da Pressão Arterial/métodos , Posicionamento do Paciente/métodos , Pressão Sanguínea , Feminino , Humanos , Gravidez
11.
J Palliat Med ; 25(3): 455-460, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-34981972

RESUMO

Background: Our previous study to understand end-of-life care of adolescents and young adults (AYAs) had a suboptimal survey response rate by bereaved caregivers. Objective: To identify sociodemographic factors associated with caregiver nonparticipation. Design/Setting/Subjects:Post hoc analysis of a retrospective multicenter cohort study of caregivers of deceased AYAs from 2013 to 2016. Measurements: Exposures: race, ethnicity, area-, and household-poverty. Primary outcome: survey participation. Secondary outcomes: loss to follow-up at each recruitment step. Results: Thirty-five of 263 eligible caregivers participated in the survey (13.3%). Caregivers of AYAs living in high-poverty zip codes were significantly more likely to have a disconnected or incorrect phone number (odds ratio [OR] 2.12; 95% confidence interval [CI] 1.04-4.58; p = 0.03). Caregivers of nonwhite AYAs were significantly less likely to participate (OR 0.35; 95% CI 0.12-0.87; p = 0.01). Conclusions: Caregivers of patients living in poverty are less likely to be reached by traditional recruitment efforts. Caregivers of racial/ethnic minority patients are less likely to participate overall.


Assuntos
Cuidadores , Etnicidade , Adolescente , Estudos de Coortes , Humanos , Grupos Minoritários , Cuidados Paliativos , Estudos Retrospectivos , Adulto Jovem
12.
Support Care Cancer ; 30(4): 3029-3042, 2022 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-34735601

RESUMO

PURPOSE: This review aims to critically evaluate the efficacy of web or mobile-based (WMB) interventions impacting emotional symptoms in patients with advanced cancer. METHOD: Articles published from 1991 to 2019 were identified using PubMed, PsycINFO, CINAHL, and Scopus. Only interventions involving adults with advanced cancer using a WMB intervention to manage emotional symptoms were included. Risk of bias was assessed using ROBINS-I and ROB2 tools. Studies that reported mean symptom scores were pooled using a random-effects model, and standardized mean difference (SMD) and 95% CIs were calculated. RESULTS: Twenty-three of the 1177 screened studies met the inclusion criteria, and a total sample of 2558 patients were included. The sample was 57% female, and 33% had advanced cancer with mean age of 57.15 years. Thirteen studies evaluated anxiety, nineteen evaluated depression, and eleven evaluated distress. Intervention components included general information, tracking, communication, multimedia choice, interactive online activities, tailoring/feedback, symptom management support content, and self-monitoring. Overall pooled results showed that WMB interventions' effects on decreasing anxiety (SMD - 0.20, - 0.45 to 0.05, I2 = 72%), depression (SMD - 0.10, - 0.30 to 0.11, I2 = 73%), and distress (SMD - 0.20, - 0.47 to 0.06, I2 = 60%) were not significant for randomized controlled trials (RCTs). In contrast, WMB interventions significantly decreased symptoms of anxiety (p = .002) in a sub-group analysis of non-RCTs. CONCLUSION: This meta-analysis demonstrated that WMB interventions were not efficacious in alleviating emotional symptoms in adults with advanced cancer. Considering the diversity of interventions, the efficacy of WMB interventions and its impacts on emotional symptoms should be further explored.


Assuntos
Ansiedade , Neoplasias , Adulto , Ansiedade/etiologia , Ansiedade/terapia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Neoplasias/terapia , Cuidados Paliativos , Qualidade de Vida
13.
J Rural Health ; 38(1): 63-69, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-33856695

RESUMO

PURPOSE: Culturally competent health care has led to increasing interest in how patients' identities influence the management of their health. The ways rural patients with advanced cancer process emotions and cope with their disease may be influenced by their rural context. The aims for this study were to (1) describe the emotions rural cancer patients experience, (2) describe how rural cancer patients manage their emotions within their rural context, and (3) interlace the themes related to coping with emotions. METHODS: This paper is a subanalysis of a larger project focused on symptom management among rural patients living with advanced cancer. Using a qualitative descriptive design, authors read and coded patient interview transcripts to extract key perspectives related to managing emotions within a rural context. FINDINGS: Sixteen participants, 10 men and 6 women, with a mean age of 68.75 years completed this study. Participants described a spectrum of emotional experiences. Some participants reported no distress, and some described high levels of distress. While previous writers described low levels of religious coping among rural patients, participants in this study often named their faith/spirituality as a major source of emotional coping. Participants also galvanized their social support network, particularly those in their religious community. Finally, participants in this study reported the use of medication as a last resort. CONCLUSION: Results from this study might be influenced from cultural variables found in the rural community; specifically, religiosity and close social networks. Future interventions need to be tailored to the unique responses of rural patients.


Assuntos
Neoplasias , População Rural , Adaptação Psicológica , Idoso , Emoções , Feminino , Humanos , Masculino , Religião
14.
J Palliat Care ; 37(2): 87-92, 2022 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-33752501

RESUMO

Background: The quality of palliative and end-of-life (EOL) care for adolescents and young adults (AYAs) with cancer remains largely unknown. Objective: To describe caregivers of AYA cancer decedents perspectives' on EOL care quality related to EOL care communication. Design: Cross-sectional observational study. Setting/Subjects: Caregivers (n = 35) of AYAs who died from a cancer diagnosis from 2013-2016 were recruited from 3 U.S. academic medical centers. Measurements: Caregiver participants completed structured surveys (FAMCARE scale and the Toolkit After-Death Bereaved Family Member Interview) by telephone to gather perceptions of quality of EOL care of their AYA cancer decedents. Results: Caregivers reported unmet needs regarding preparation for the time of death (50%), the dying process (45%) and unmet spiritual/ religious needs (38%). Lowest quality of EOL care scores related to communication and emotional support. Conclusions: Our findings call for special focus on providing information about what to expect during the dying process and adequately addressing spiritual and religious preferences during EOL care for AYAs.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Assistência Terminal , Adolescente , Cuidadores/psicologia , Estudos Transversais , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Assistência Terminal/psicologia , Adulto Jovem
15.
Cancer Nurs ; 45(1): E279-E290, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-33577204

RESUMO

BACKGROUND: People with cancer who also have multiple chronic conditions (MCCs) experience co-occurring symptoms known as symptom clusters. OBJECTIVE: To describe MCC and symptom clusters in people with cancer and to evaluate the relationships between MCCs and symptom severity, symptom interference with daily life, and quality of life (QoL). METHODS: Weekly over a 3-week chemotherapy cycle, 182 adults with solid tumor cancer receiving chemotherapy completed measures of symptom severity, symptom interference with daily life, and QoL. Medical records reviewed to count number of MCCs in addition to cancer. Exploratory factor analysis was performed to identify symptom clusters. The relationships between the number of MCCs and the outcomes (symptom severity and symptom interference with daily life and QoL) at each time point were examined using the χ2 test. Longitudinal changes in outcomes were examined graphically. RESULTS: The number of MCCs ranged from 0 to 9, but most participants (62.1%) had 2 or fewer MCCs. Obesity was the most prevalent chronic condition. Four symptom clusters were identified: nutrition, neurocognitive, abdominal discomfort, and respiratory clusters. At each time point, no significant differences were found for MCCs and any outcome. However, symptom severity in all the symptom clusters, symptom interference with daily life, and QoL demonstrated a worsening in the week following chemotherapy. CONCLUSION: A majority of our sample had 2 or fewer MCCs, and MCCs did contribute to patient outcomes. Rather, timing of chemotherapy cycle had the greatest influence of patient outcomes. IMPLICATIONS FOR PRACTICE: Additional support on day 7 of chemotherapy treatment is needed for people with MCCs.


Assuntos
Múltiplas Afecções Crônicas , Neoplasias , Adulto , Análise Fatorial , Humanos , Neoplasias/complicações , Neoplasias/tratamento farmacológico , Qualidade de Vida , Síndrome
16.
J Adolesc Young Adult Oncol ; 11(5): 498-505, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-34870475

RESUMO

Purpose: High-quality communication is a standard of palliative care for adolescents and young adults (AYAs) with cancer. Yet, few studies have characterized the negative communication experiences of AYAs near the end of life (EOL). Methods: We performed a secondary analysis of 27 qualitative interviews with bereaved caregivers of AYAs with cancer who died between 2013 and 2016 at 1 of 3 sites. Interviews focused on barriers to optimal EOL care for AYAs. We used thematic analysis using iterative consensus coding to analyze transcripts. Results: Participants were predominantly white (85%), non-Hispanic (93%), and female (74%). Half of the participants were bereaved parents, and 37% were bereaved partners or spouses. Overall, 23/27 (85%) caregivers described at least one negative communication experience related to one of three themes: (1) Insensitivity to patients' needs, preferences, and values; (2) Insufficient discussions of prognosis and/or EOL; and (3) Loss of support from the clinical team near EOL. Both clinician- and patient-related factors contributed to limited EOL discussions. Lack of care continuity related to both clinician factors and systems of care that required new or changing clinical care teams near the EOL. Conclusions: Caregivers report a desire for clinician sensitivity to their needs and values, information about the future, and longitudinal connections with individual clinicians. Clinicians might improve caregivers' EOL experiences by eliciting patient preferences, engaging in EOL discussions, adapting to the AYA's developmental and emotional needs, and demonstrating a commitment to AYAs and caregivers as they approach the EOL.


Assuntos
Neoplasias , Assistência Terminal , Humanos , Adulto Jovem , Adolescente , Feminino , Cuidadores/psicologia , Comunicação , Neoplasias/psicologia , Morte
17.
Palliat Med ; 35(6): 1020-1038, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33840271

RESUMO

BACKGROUND: Symptom management is a critical aspect of comprehensive palliative care for people with advanced cancer. Web and mobile-based applications are promising e-Health modalities that can facilitate timely access to symptom management interventions for this population. AIM: To evaluate the efficacy of web and mobile-based symptom management interventions in alleviating physical symptom burden in people with advanced cancer. DESIGN: A systematic review and meta-analysis was conducted. PROSPERO ID = CRD42020155295. DATA SOURCES: We searched databases including PubMed, PsycINFO, and CINAHL from 1991 until 2019. Inclusion criteria were: adults with advanced cancer, web or mobile-based interventions targeting symptom management, and report of physical symptom data. Risk of bias was assessed using the ROBINS-I and RoB2. Using RevMan, standardized mean difference (SMD) and 95% confidence intervals were calculated. Heterogeneity was assessed using the I2 statistic. An assessment of interventions was conducted by evaluating the delivery mode, duration, and evaluation of application feature and theoretical elements. RESULTS: A total of 19 studies are included in the systematic review and 18 in the meta-analysis. Majority of the studies were deemed to have high risk of bias. Most of the interventions used a web-application for delivering their education (n = 17). While the interventions varied regarding duration and content, they were mainly guided by a symptom management theory. Web and mobile-based interventions significantly improved the overall physical symptom burden (SMD = -0.18; 95% CI = -0.28 to -0.09; I2 = 0%; p = 0.0002). CONCLUSIONS: Web and mobile-based intervention are efficacious in decreasing the overall physical symptom burden in people with advanced cancer.


Assuntos
Neoplasias , Cuidados Paliativos , Adulto , Humanos , Neoplasias/complicações
18.
Am J Hosp Palliat Care ; 38(12): 1516-1525, 2021 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-33792405

RESUMO

BACKGROUND: Oral disease is highly prevalent in persons receiving palliative care (PRPC). Yet, little is known about how PRPC perceive their oral health status and related treatment needs. METHODS: This mixed-method study included 49 English-speaking PRPC (age≥18) recruited from the University of Iowa Palliative Care Clinic. Participants first completed a structured review of oral symptoms, followed by an oral exam. A nested sample of 11 participants also completed a semi-structured, in-depth interview querying their perceived oral health concerns and related treatment needs. Quantitative and qualitative data was analyzed and integrated for interpretation. RESULTS: Participants averaged 58.4 years. Nearly 70% had terminal cancer and 25% had advanced organ failure. Eighty-six percent of participants reported at least one oral symptom, including dry mouth (83.7%), a pain-related symptom (40.8%), or oral function difficulties (51.0%). Among the 31 dentate participants, 52% had untreated decayed/broken teeth and 33.3% had oral soft tissue lesions. Ill-fitting dentures and denture sores were common among denture users. About 40% of participants reported compromised health and/or quality of life due to oral conditions; however, the perceived impacts were modest. With the exception of painful conditions, oral treatment was not a priority for most of the participants. CONCLUSION: Oral disease was highly prevalent in PRPC, yet its overall impact was modest. In the absence of painful symptoms, most participants reported limited desire to seek treatment for oral health conditions. However, given the serious impacts of untreated oral diseases, oral healthcare decision should not be based solely on self-reported symptoms or distress.


Assuntos
Doenças da Boca , Xerostomia , Adolescente , Adulto , Humanos , Doenças da Boca/epidemiologia , Saúde Bucal , Cuidados Paliativos , Qualidade de Vida , Xerostomia/epidemiologia
19.
Eur J Oncol Nurs ; 52: 101944, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33774374

RESUMO

PURPOSE: Post-treatment head and neck cancer (HNC) survivors contend with distinct, long-term challenges related to cancer treatments that impact their day-to-day lives. Alongside follow-up cancer care, they also must be responsible for the daily management of often intrusive physical and psychological symptoms, as well as maintaining their health and a lifestyle to promote their well-being. The purpose of this study was to identify HNC survivors' approaches toward engagement in self-management activities. METHODS: Post-treatment HNC survivors (N=22) participated in the study through purposeful sampling. Participants were eligible if they 1) had a history of upper aerodigestive tract cancer; 2) completed their most recent primary treatment (i.e. chemotherapy, radiation, and surgery) more than eighteen months prior and had no evidence of HNC, and 3) could speak in English. A semi-structured interview was used. Data was analyzed using content analysis. RESULTS: We identified three approaches that survivors took towards self-management activities: taking charge, living with it, and engaging as needed. Our results showed that taking charge is when survivors take an active role in evaluating their health and taking action subsequently; as needed represents engaging in self-management as necessary; and living with it reflects adapting to the symptoms and side effects without managing them. CONCLUSIONS: We propose self-management approaches as a novel mechanism to understand the relationship between survivors' characteristics and health preferences and their self-management. It is important for clinicians to highlight the variation in individuals 'self-management approaches as they work to identify tailored patient-centered strategies that compliment specific patient needs.


Assuntos
Sobreviventes de Câncer/psicologia , Neoplasias de Cabeça e Pescoço/psicologia , Autogestão/métodos , Autogestão/psicologia , Centros Médicos Acadêmicos , Atividades Cotidianas/psicologia , Adaptação Psicológica , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Neoplasias de Cabeça e Pescoço/terapia , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Psico-Oncologia , Pesquisa Qualitativa , Qualidade de Vida
20.
J Hosp Palliat Nurs ; 23(4): 316-322, 2021 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-33605646

RESUMO

Palliative and end-of-life care has been pushed to the forefront of medical care during the pandemic caused by the coronavirus-2019 (COVID-19). Palliative care organizations have responded to the growing demand for the rapid dissemination of research, clinical guidance, and instructions for care to clinicians, patients with COVID-19, and their caregivers by creating COVID-19 resource Web pages. Here, end users can access resources that can be updated in real time. These Web pages, however, can be variable in what resources they offer and for whom they are designed for (clinicians, patients, caregivers). Therefore, this project was conducted to consolidate these resources via summary tables of specific contents available through each Web page grouped by palliative care domains (eg, care discussion and planning, communication, symptom management, care access) and to identify the target audience. This environmental scan was conducted by compiling a comprehensive list of COVID-19 resource Web pages of palliative care organizations generated by reviewing previously published research studies and consulting with palliative care research experts. Snowballing techniques were used to identify resource Web pages not captured in the initial scan. Two reviewers independently evaluated eligible Web pages for content via a form developed for the study, and Cohen κ statistic was calculated to ensure interrater reliability. The final κ statistic was 0.76. Of the 24 websites screened, 15 websites met our eligibility criteria. Among the eligible resource Web pages, most (n = 12, 80%) had specific target audiences and care settings, whereas the rest presented information targeted to all audiences. Although 11 Web pages offered resources that addressed all 4 domains, only 1 Web page conveyed all 12 subdomains. We recommend the use of this guide to all frontline clinicians who require guidance in clinically managing patients with COVID-19 receiving palliative care and/or end-of-life care.


Assuntos
Planejamento Antecipado de Cuidados/organização & administração , Bibliografias como Assunto , Cuidados Paliativos na Terminalidade da Vida/organização & administração , Cuidados Paliativos/organização & administração , Assistência Terminal/organização & administração , COVID-19/epidemiologia , COVID-19/terapia , Humanos , Internet , Pandemias , SARS-CoV-2
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