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1.
J Sex Med ; 20(6): 871-877, 2023 05 26.
Artículo en Inglés | MEDLINE | ID: mdl-37057601

RESUMEN

BACKGROUND: Patient-reported outcome measures for sexual health were often designed for research studies that included only heterosexual, partnered, and cisgender participants; as such, they may have limited applicability for clinical use among sexual and gender minority (SGM) individuals or those without a partner. AIM: We aimed to conduct cognitive interviews with SGM persons and heterosexual women to determine the readability, comprehension, and applicability of questionnaire items to assess sexual function among diverse sexual and gender identities. METHODS: We conducted 4 rounds of cognitive interviews with 52 participants (28 SGM; 24 cisgender, heterosexual) who provided feedback on the comprehension and wording of questionnaire items and response scales. We used items from the Female Sexual Function Index (FSFI) and focused on establishing content validity of a modified measure. Participants made recommendations for changes to the questionnaire, which was iteratively revised between interview rounds. Two independent coders analyzed the transcripts using structural coding based on 5 predefined codes: satisfaction with item, specificity/language change needed, missing/suggested item, patient definitions of concepts, and confusion with item. OUTCOMES: Content validity. RESULTS: After 3 rounds of cognitive interviews and revisions to the questionnaire, participants found the final version acceptable and understandable, thereby reaching thematic saturation and establishing content validity of the modified FSFI. Modifications included the following: replacing all instances of "sexual stimulation" and "intercourse" with "sexual activity (alone or with a partner)," broadening the definition of "vaginal penetration" beyond penile-vaginal penetration, and adding skip logic to include the option "no sexual activity." Participants identified missing concepts important to their sexual health, such as use of an external lubricant. CLINICAL IMPLICATIONS: The FSFI and similar questionnaires need to be adapted to broader clinical practice populations such that all persons' experiences are accurately reflected and assessed, ensuring that sexual health needs can be met more inclusively. STRENGTH AND LIMITATIONS: A strength of the study was using cognitive interviews engaging patient perspectives, which is considered the gold standard for establishing content validity. One limitation is that participants included predominantly White and highly educated women. CONCLUSION: Feedback from interviews supports modifying FSFI items and further psychometric testing, and future studies should evaluate the measure among racially and educationally diverse groups.


Asunto(s)
Heterosexualidad , Minorías Sexuales y de Género , Humanos , Femenino , Identidad de Género , Conducta Sexual/psicología , Cognición
2.
Palliat Med ; 37(4): 460-474, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36475950

RESUMEN

BACKGROUND: Lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ+) individuals experience discrimination throughout the care continuum, including during serious illness and at end of life. High-quality palliative care requires that health professionals deliver individualized services that reflect the needs, experiences, and preferences of LGBTQ+ persons. AIM: To identify and appraise existing evidence related to the needs, experiences, and preferences for palliative and end of life care among LGBTQ+ individuals with serious illness. DESIGN: Data-based convergent synthesis design reported per the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. DATA SOURCES: PubMed, Embase, Cochrane CENTRAL, PsycINFO, CINAHL, and Scopus from January 1, 2010 to November 6, 2020. RESULTS: Of 4875 results captured, 69 articles underwent full-text review and 13 were retained for analysis. Most studies were from North America with trans individuals represented in 10 of 13 studies. Needs (n = 6) included increased social support, institutional safety, economic and legal supports, and advocacy to mitigate health barriers.Experiences (n = 12) were driven by fear and worry associated with discrimination/stigma,providers' hetero-/cisnormative assumptions, homophobia and transphobia, social isolation, and an undignified death. Preferences (n = 6) pertained to inclusion of chosen families in decision-making, disclosure of LGBTQ+ identity based on safety of the clinical environment, and a desire to maintain autonomy. CONCLUSIONS: The robustness of the science has improved regarding the needs, experiences, and preferences of trans individuals. Actionable, inclusive policies coupled with sustained and integrated cultural sensitivity training for health workers are mandatory. Interventional research is critical to enhance tailored palliative care for LGBTQ+ people and their chosen families.


Asunto(s)
Cuidados Paliativos al Final de la Vida , Minorías Sexuales y de Género , Cuidado Terminal , Femenino , Humanos , Conducta Sexual , Cuidados Paliativos
3.
J Sex Med ; 18(12): 2020-2027, 2021 12.
Artículo en Inglés | MEDLINE | ID: mdl-34732309

RESUMEN

BACKGROUND: Patient-reported outcome instruments to assess sexual functioning typically assume that patients are heterosexual and have a single sexual partner, thus they may have limited applicability for sexual and gender minority (SGM) populations as well as for nonpartnered individuals or those with multiple partners. AIM: To explore the perceptions of SGM persons regarding the Female Sexual Function Index (FSFI), a commonly used sexual functioning questionnaire. METHODS: We conducted 2 rounds of cognitive interviews with 27 SGM persons with and without a cancer diagnosis. Interviews were audio-recorded and transcribed. Two researchers independently coded the transcripts using inductive thematic analysis to identify major themes. OUTCOMES: Themes identified via qualitative analysis. RESULTS: Cognitive debriefing with the participants provided critical insights about the way we ask questions about sexual functioning in the oncology clinic. Three overarching themes arose from the data: (i) Certain aspects of the questionnaire were felt to unnecessarily medicalize sexuality; (ii) FSFI domains were perceived to represent a narrow and heteronormative experience of sexuality focused on penile-vaginal intercourse; (iii) Questionnaire domains emphasizing sexual "performance" were perceived as male-oriented. CLINICAL IMPLICATIONS: Questionnaires such as the FSFI that were developed in research studies with specific eligibility criteria need to be adapted to the broader population seen in clinical practice. STRENGTHS & LIMITATIONS: Strengths of the study include purposive sampling of SGM persons through LGBTQ networks. Our sample included individuals of different sexual orientations, gender identities, marital status, and cancer histories. However, a limitation is that the the majority of the sample was white and college-educated. Other limitations of the study include the potential sampling bias of self-selected participants with a particular interest in the study questions. CONCLUSION: The findings provide important evidence for the development of a more inclusive sexual function measure, moving away from the traditional heteronormative, cisnormative approach to measuring sexual function. Austria MD, Lynch K, Le T, et al. Sexual and Gender Minority Persons' Perception of the Female Sexual Function Index. J Sex Med 2021;18:2020-2027.


Asunto(s)
Minorías Sexuales y de Género , Femenino , Identidad de Género , Heterosexualidad , Humanos , Masculino , Percepción , Conducta Sexual/psicología
5.
Anesth Analg ; 127(2): 359-366, 2018 08.
Artículo en Inglés | MEDLINE | ID: mdl-29757779

RESUMEN

An estimated 25 million people identify as transgender worldwide, approximately 1 million of whom reside in the United States. The increasing visibility and acceptance of transgender people makes it likely that they will present in general surgical settings; therefore, perioperative health care providers must develop the knowledge and skills requisite for the safe management of transgender patients in the perioperative setting. Extant guidelines, such as those published by the World Professional Association for Transgender Health and the University of California San Francisco Center of Excellence for Transgender Health, serve as critical resources to those caring for transgender patients; however, they do not address their unique perioperative needs. It is essential that anesthesia providers develop the knowledge and skills necessary for safely managing transgender patients in the perioperative setting. This review provides an overview of relevant terminology, the imperative for the provision of culturally sensitive care, and guidelines for preoperative, intraoperative, and postoperative management of the transgender patient.


Asunto(s)
Anestesiología/métodos , Anestesiología/normas , Atención Perioperativa/métodos , Cirugía de Reasignación de Sexo/métodos , Personas Transgénero , Transexualidad/cirugía , Asistencia Sanitaria Culturalmente Competente , Femenino , Personal de Salud , Accesibilidad a los Servicios de Salud , Hormonas/uso terapéutico , Humanos , Masculino , Cuidados Posoperatorios , San Francisco , Terminología como Asunto , Estados Unidos , Universidades
6.
J Health Commun ; 23(4): 329-339, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-29521575

RESUMEN

Delivery of culturally competent care toward lesbian, gay, bisexual, and transgender (LGBT) patients depends on how health-care providers (HCPs) communicate with them; however, research about knowledge, attitude, and behavior of HCPs toward LGBT patients is scant. The objectives of our study were to describe oncology HCPs' knowledge and examine if beliefs about LGB and transgender patients mediate the effects of LGBT health-care knowledge on open communication behaviors with LGB and transgender patients, respectively. A total of 1253 HCPs (187 physicians, 153 advance practice professionals (APPs), 828 nurses, and 41 others) at a Comprehensive Cancer Center completed an online survey that included the following measures: LGBT health-care knowledge, beliefs, communication behaviors, willingness to treat LGBT patients, encouraging LGBT disclosure, and perceived importance of LGBT sensitivity training. Only 50 participants (5%) correctly answered all 7 knowledge items, and about half the respondents answered 3 (out of 7) items correctly. Favorable beliefs about LGBT health care mediated the effect of higher LGBT health-care knowledge on open communication behaviors with transgender patients, controlling for effects of type of profession, religious orientation, gender identity, sexual orientation, and having LGBT friends/family. The results of this study demonstrated an overall lack of medical knowledge and the need for more education about LGBT health care among oncology HCPs.


Asunto(s)
Comunicación , Conocimientos, Actitudes y Práctica en Salud , Personal de Salud/psicología , Neoplasias/terapia , Minorías Sexuales y de Género , Adolescente , Adulto , Anciano , Femenino , Personal de Salud/estadística & datos numéricos , Humanos , Masculino , Oncología Médica , Persona de Mediana Edad , Encuestas y Cuestionarios , Adulto Joven
7.
JCO Oncol Pract ; 20(5): 657-665, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38382002

RESUMEN

PURPOSE: Improving care transitions for patients with cancer discharged from the hospital is considered an important component of quality care. Digital monitoring has the potential to better the delivery of transitional care through improved patient-provider communication and enhanced symptom management. However, remote patient monitoring (RPM) interventions have not been widely implemented for oncology patients after discharge, an innovative setting in which to apply this technology. METHODS: We implemented a RPM intervention which identifies medical oncology patients at discharge, monitors their symptoms for 10 days, and intervenes as necessary to manage symptoms. We evaluated the feasibility (>50% patient engagement with symptom assessment), appropriateness (symptom alerts), and acceptability (net promoter score >0.7) of the intervention and the initial effect on acute care visits and return on investment. RESULTS: During the study period, January 1, 2021, to December 31, 2022, we evaluated 2,257 medical oncology discharges representing 1,857 unique patients. We found that 65.9% of patients discharged (N = 1,489) completed at least one symptom assessment postdischarge and of them, 45.5% (n = 678) generated a severe symptom alert that we helped to manage. Patients expressed high satisfaction with the intervention with a net promoter score of 84%. In preliminary analysis of patients with GI malignancies (n = 449), we found a nonsignificant decrease in 30-day readmissions for the intervention cohort (n = 269) by 5.8% as compared with the control (n = 180; from 33.3% to 27.5%; P = .22). CONCLUSION: Digital transitional care management was feasible and demonstrated that patients transitioning from the hospital to home have a substantial symptom burden. The intervention was associated with high patient satisfaction but will require further refinement and evaluation to increase its impact on 30-day readmission.


Asunto(s)
Cuidado de Transición , Humanos , Cuidado de Transición/normas , Masculino , Femenino , Persona de Mediana Edad , Anciano , Neoplasias/terapia , Oncología Médica/métodos , Alta del Paciente , Telemedicina/métodos , Adulto
8.
Oncol Nurs Forum ; 50(2): 157-167, 2023 02 17.
Artículo en Inglés | MEDLINE | ID: mdl-37677801

RESUMEN

OBJECTIVES: To describe cancer screening characteristics and better understand individual-, environmental-, and organizational-level barriers of sexual and gender minority (SGM) populations. . SAMPLE & SETTING: This study was conducted using a combined sample from the Behavioral Risk Factor Surveillance System (BRFSS) national dataset from 2014 and 2016. METHODS & VARIABLES: Chi-square tests for independence and logistic regression analysis tests were performed to determine whether relationships existed between SGM status and demographics. RESULTS: Black respondents or those who reported their race as other, were female, had some college or technical school or more, and had healthcare coverage were less likely to present for cancer screening. SGM respondents who were in good or better health; were unmarried; were aged 18-44 years or 45-55 years; or were Asian, Native American, or Hawaiian, or reported their race as other, had higher odds of screening for cancer. IMPLICATIONS FOR NURSING: Disparities in cancer screening among SGM populations are not well documented. These findings will inform structured education and preventative interventions to improve screening participation among SGM populations.


Asunto(s)
Sistema de Vigilancia de Factor de Riesgo Conductual , Detección Precoz del Cáncer , Neoplasias , Minorías Sexuales y de Género , Femenino , Humanos , Masculino , Asiático , Detección Precoz del Cáncer/estadística & datos numéricos , Neoplasias/diagnóstico , Neoplasias/epidemiología , Neoplasias/etnología , Minorías Sexuales y de Género/estadística & datos numéricos , Aceptación de la Atención de Salud/estadística & datos numéricos , Estados Unidos/epidemiología , Adolescente , Adulto Joven , Adulto , Persona de Mediana Edad , Negro o Afroamericano , Indio Americano o Nativo de Alaska , Grupos Raciales , Escolaridad , Cobertura del Seguro , Seguro de Salud
9.
Transgend Health ; 8(3): 254-263, 2023 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-37342477

RESUMEN

Purpose: Patients identifying as transgender report that a lack of access to providers with trans-specific medical knowledge represents one of the largest barriers to equitable health care access. Through an institutional survey, we assessed and analyzed the attitudes, knowledge, behaviors, and education of perioperative clinical staff when caring for transgender patients with cancer. Methods: A web-based survey was distributed to 1100 perioperative clinical staff at the National Cancer Institute (NCI)-Designated Comprehensive Cancer Center in New York City between January 14, 2020, and February 28, 2020, and received 276 responses. The survey instrument consisted of 42 nondemographic questions about attitudes, knowledge, behaviors, and education regarding transgender health care and 14 demographic questions. Questions were presented as a mix of Yes/No, free text response, and a 5-point Likert scale. Results: Certain demographic groups (younger, lesbian, gay, or bisexual [LGB], fewer years employment at the institution) held more favorable attitudes toward the transgender population and were more knowledgeable regarding their health needs. Respondents underreported the rates of mental illness and risk factors for cancer like HIV and substance use among the transgender population. A greater proportion of respondents identifying as LGB endorsed witnessing an interaction wherein a colleague exhibited attitudes/beliefs about the transgender population that were barriers to care. Only 23.2% of respondents were ever trained on the health needs of transgender patients. Conclusion: There is a need for institutions to assess the cultural competency of perioperative clinical staff toward transgender health, especially within certain demographics. This survey may inform quality education initiatives to eliminate biases and knowledge gaps.

10.
Health Soc Care Community ; 29(2): 305-318, 2021 03.
Artículo en Inglés | MEDLINE | ID: mdl-32767722

RESUMEN

The Institute of Medicine reports lesbian, gay, bisexual and transgender (LGBT) individuals having the highest rates of tobacco, alcohol and drug use leading to elevated cancer risks. Due to fear of discrimination and lack of healthcare practitioner education, LGBT patients may be more likely to present with advanced stages of cancer resulting in suboptimal palliative care. The purpose of this scoping review is to explore what is known from the existing literature about the barriers to providing culturally competent cancer-related palliative care to LGBT patients. This review will use the five-stage framework for conducting a scoping review developed by Arksey and O'Malley. The PubMed, Scopus, PsychINFO and Cochrane electronic databases were searched resulting in 1,442 citations. Eligibility criteria consisted of all peer-reviewed journal articles in the English language between 2007 and 2020 resulting in 10 manuscripts. Barriers to palliative cancer care for the LGBT include discrimination, criminalisation, persecution, fear, distress, social isolation, disenfranchised grief, bereavement, tacit acknowledgment, homophobia and mistrust of healthcare providers. Limited healthcare-specific knowledge by both providers and patients, poor preparation of legal aspects of advanced care planning and end-of-life care were underprovided to LGBT persons. As a result of these barriers, palliative care is likely to be provided for LGBT patients with cancer in a deficient manner, perpetuating marginalisation and healthcare inequities. Minimal research investigates these barriers and healthcare curriculums do not provide practitioners skills for administering culturally sensitive palliative care to LGBT patients.


Asunto(s)
Neoplasias , Minorías Sexuales y de Género , Personas Transgénero , Bisexualidad , Femenino , Humanos , Neoplasias/terapia , Cuidados Paliativos , Conducta Sexual
11.
Ann LGBTQ Public Popul Health ; 2(1): 35-52, 2021 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-37475763

RESUMEN

Enhancing communicative competence of healthcare providers (HCPs) is a critical initiative for improving the healthcare experience of sexual and gender minority (SGM) cancer patients. This study presents the development, implementation, and preliminary efficacy of a new training curriculum for improving oncology HCPs' skills in providing a safe and welcoming environment for SGM cancer patients (SGM Comskil training). Thirty-three (N = 33) oncology HCPs including nurses, nurse leaders, and nurse practitioners participated in a 4.25-hour SGM Comskil Training between July and August 2019. Overall, participants reported highly favorable evaluations of the training, with more than 80% of the participants reacting positively to 12 of the 15 evaluation items assessing engagement and reflectiveness for experiential role-plays with lesbian, gay, bisexual (LGB) and transgender standardized patients (SPs), respectively. Participants also demonstrated significant improvements in SGM healthcare knowledge, self-efficacy, beliefs toward LGB and transgender persons, and SGM-sensitive language use skills following the training. Encouraged by the feasibility of conducting this experiential training with busy cancer care HCPs and the initial favorable participant evaluation of the SGM Comskil training, results clearly indicate that this training can be rolled out into clinical settings to ensure its translational potential. The next steps should assess observable changes in communication skills and SGM-sensitive language skills with SGM patients and improvements in SGM patients' healthcare experience.

12.
JCO Oncol Pract ; 17(9): e1278-e1285, 2021 09.
Artículo en Inglés | MEDLINE | ID: mdl-34085536

RESUMEN

PURPOSE: Oncology patients are vulnerable to adverse outcomes associated with COVID-19, and clinical deterioration must be identified early. Several institutions launched remote patient monitoring programs (RPMPs) to care for patients with COVID-19. We describe patients' perspectives on a COVID-19 RPMP at a National Comprehensive Cancer Center. METHODS: Patients who tested positive for COVID-19 were eligible. Enrolled patients received a daily electronic COVID-19 symptom assessment, and a subset of high-risk patients also received a pulse oximeter. Monitoring was provided by a centralized team and was discontinued 14 days after a patient's positive test result and following 3 days without worsening symptoms. Patients who completed at least one assessment and exited the program were sent a patient engagement survey to evaluate the patient's experience with digital monitoring for COVID-19. RESULTS: The survey was distributed to 491 patients, and 257 responded (52% completion rate). The net promoter score was 85%. Most patients agreed that the RPMP was worthwhile, enabled better management of their COVID-19 symptoms, made them feel more connected to their healthcare team, and helped prevent emergency room visits. Identified themes regarding patient-perceived value of a RPMP included (1) security: a clinical safety net; (2) connection: a link to their clinical team during a period of isolation; and (3) empowerment: an education on the virus and symptom management. CONCLUSION: RPMPs are perceived to be of value to oncology patients with COVID-19. Policymakers should consider how these programs can be reimbursed to keep vulnerable patients at home and out of the acute care setting.


Asunto(s)
COVID-19 , Neoplasias , Humanos , Oncología Médica , Monitoreo Fisiológico , Neoplasias/terapia , SARS-CoV-2
13.
Patient Educ Couns ; 103(5): 1041-1048, 2020 05.
Artículo en Inglés | MEDLINE | ID: mdl-31862127

RESUMEN

OBJECTIVE: Disproportionate rates of certain cancers exist among sexual and gender minority (SGM) older adults. Collecting sexual orientation and gender identity (SOGI) information is important in providing individualized care. This study assessed cancer patients' perceptions regarding SOGI questions, preferred ways to communicate SOGI information to healthcare providers and comfort in sharing room with SGM patients. METHODS: 225 oncology patients completed self-reported surveys. Descriptive and stratified analyses were utilized to analyze patient perceptions regarding SOGI questions and to explore differences by demographic characteristics. RESULTS: Participants reported favorable perceptions regarding gender, M = 4.48 (SD = .81), sex-at-birth, M = 4.51 (SD = .77), pronoun, M = 4.36 (SD = .87), and sexual orientation, M = 4.53 (SD = .74) questions, regardless of demographic characteristics (p > 0.05, for all stratified analyses). Overall, 56.7 % participants reported comfort in sharing room with someone of a different SO, 59.2 % cisgender men reported comfort in sharing room with a transgender man, and 37.8 % cisgender women reported comfort in sharing room with a transgender woman. CONCLUSION: This study examined oncology patient perceptions regarding SOGI disclosure. The invisibility of SGM populations in the context of cancer care is directly attributable to the lack of SOGI data collection. PRACTICE IMPLICATIONS: Cancer care institutions should gather SOGI data to provide individualized care to all cancer patients.


Asunto(s)
Revelación , Neoplasias , Prioridad del Paciente , Minorías Sexuales y de Género/psicología , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Identidad de Género , Humanos , Masculino , Oncología Médica , Persona de Mediana Edad
14.
Transl Behav Med ; 10(4): 918-927, 2020 10 08.
Artículo en Inglés | MEDLINE | ID: mdl-30476333

RESUMEN

A compelling touted strategy for reducing discrimination towards lesbian, gay, bisexual, and transgender (LGBT) patients is improving communicative competence of health care providers (HCPs); however, evidence base for describing communication practices between HCPs and LGBT patients is scarce. The purpose of this study was to qualitatively examine HCP experiences and perspectives as they relate to patient sexual orientation and gender identity (SOGI) disclosure, perceived communication and structural/administrative challenges in interactions with LGBT patients, and suggestions for improving care of LGBT patients. The sample consisted of 1,253 HCPs, who provided open-ended responses to an online cross-sectional survey conducted at a Comprehensive Cancer Center in the Northeastern United States. The open-ended responses were inductively and deductively coded for key themes and sub-themes. The results demonstrated an array of useful communication strategies employed by oncology HCPs to encourage LGBT patients' SOGI disclosure (direct questions regarding sexual orientation, use of the term "partner," and using correct pronouns), communication and structural/administrative challenges faced by HCPs in providing care (HCP own fears and biases, transgender patient care, insurance issues, and procedural challenges for LGBT patients), and suggested recommendations from oncology HCPs to improve their care delivery for LGBT patients (more provider-based training, improving awareness of LGBT-friendly resources, establishing trusting relationships, and not assuming sexuality or gender identity). These findings have implications for developing and evaluating training programs to improve LGBT sensitivity and communication among HCPs, and encourage SOGI disclosure in an open and judgment-free health care environment.


Asunto(s)
Minorías Sexuales y de Género , Personas Transgénero , Estudios Transversales , Femenino , Identidad de Género , Personal de Salud , Humanos , Masculino , Conducta Sexual
15.
JCO Oncol Pract ; 16(10): e1050-e1059, 2020 10.
Artículo en Inglés | MEDLINE | ID: mdl-32468925

RESUMEN

PURPOSE: Early detection and management of symptoms in patients with cancer improves outcomes. However, the optimal approach to symptom monitoring and management is unknown. InSight Care is a mobile health intervention that captures symptom data and facilitates patient-provider communication to mitigate symptom escalation. PATIENTS AND METHODS: Patients initiating antineoplastic treatment at a Memorial Sloan Kettering regional location were eligible. Technology supporting the program included the following: a predictive model that identified patient risk for a potentially preventable acute care visit; a secure patient portal enabling communication, televisits, and daily delivery of patient symptom assessments; alerts for concerning symptoms; and a symptom-trending application. The main outcomes of the pilot were feasibility and acceptability evaluated through enrollment and response rates and symptom alerts, and perceived value evaluated on the basis of qualitative patient and provider interviews. RESULTS: The pilot program enrolled 100 high-risk patients with solid tumors and lymphoma (29% of new treatment starts v goal of 25%). Over 6 months of follow-up, the daily symptom assessment response rate was 56% (the goal was 50%), and 93% of patients generated a severe symptom alert. Patients and providers perceived value in the program, and archetypes were developed for program improvement. Enrolled patients were less likely to use acute care than were other high-risk patients. CONCLUSION: InSight Care was feasible and holds the potential to improve patient care and decrease facility-based care. Future work should focus on optimizing the cadence of patient assessments, the workforce supporting remote symptom management, and the return of symptom data to patients and clinical teams.


Asunto(s)
Neoplasias , Manejo de Atención al Paciente , Telemedicina , Humanos , Linfoma/terapia , Neoplasias/terapia , Proyectos Piloto , Evaluación de Síntomas
16.
J Pain Symptom Manage ; 58(6): 1048-1055.e2, 2019 12.
Artículo en Inglés | MEDLINE | ID: mdl-31472276

RESUMEN

CONTEXT: Advanced cancer patients have unrecognized gaps in their understanding about palliative radiation therapy (PRT). OBJECTIVES: To build a video decision aid for hospitalized patients with advanced cancer referred for PRT and prospectively test its efficacy in reducing decisional uncertainty, improving knowledge, increasing treatment readiness and readiness for palliative care consultation, and its acceptability among patients. METHODS: Forty patients with advanced cancer hospitalized at Memorial Sloan Kettering Cancer Center watched a video decision aid about PRT and palliative care. Patients' conceptual and logistical knowledge of PRT, decisional uncertainty, treatment readiness, and readiness for palliative care consultation were assessed before and after watching the video with a six-item knowledge survey, the decisional uncertainty subscale of the Decisional Conflict Scale, and Likert instruments to assess readiness to accept radiation treatment and/or palliative care consultation, respectively. A postvideo survey assessed the video's acceptability among patients. RESULTS: After watching the video, decisional uncertainty was reduced (28.3 vs. 21.7; P = 0.02), knowledge of PRT improved (60.4 vs. 88.3; P < 0.001), and PRT readiness increased (2.0 vs. 1.3; P = 0.04). Readiness for palliative care consultation was unchanged (P = 0.58). Patients felt very comfortable (70%) watching the video and would highly recommend it (75%) to others. CONCLUSION: Among hospitalized patients with advanced cancer, a video decision aid reduced decisional uncertainty, improved knowledge of PRT, increased readiness for PRT, and was well received by patient viewers.


Asunto(s)
Toma de Decisiones Clínicas/métodos , Neoplasias/radioterapia , Cuidados Paliativos/métodos , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Aceptación de la Atención de Salud , Educación del Paciente como Asunto , Satisfacción del Paciente , Estudios Prospectivos , Derivación y Consulta , Encuestas y Cuestionarios , Resultado del Tratamiento
17.
J Oncol Pract ; 15(4): e277-e288, 2019 04.
Artículo en Inglés | MEDLINE | ID: mdl-30689492

RESUMEN

PURPOSE: IBM Watson for Oncology trained by Memorial Sloan Kettering (WFO) is a clinical decision support tool designed to assist physicians in choosing therapies for patients with cancer. Although substantial technical and clinical expertise has guided the development of WFO, patients' perspectives of this technology have not been examined. To facilitate the optimal delivery and implementation of this tool, we solicited patients' perceptions and preferences about WFO. METHODS: We conducted nine focus groups with 46 patients with breast, lung, or colorectal cancer with various treatment experiences: neoadjuvant/adjuvant chemotherapy, chemotherapy for metastatic disease, or systemic therapy through a clinical trial. In-depth qualitative and quantitative data were collected and analyzed to describe patients' attitudes and perspectives concerning WFO and how it may be used in clinical care. RESULTS: Analysis of the qualitative data identified three main themes: patient acceptance of WFO, physician competence and the physician-patient relationship, and practical and logistic aspects of WFO. Overall, participant feedback suggested high levels of patient interest, perceived value, and acceptance of WFO, as long as it was used as a supplementary tool to inform their physicians' decision making. Participants also described important concerns, including the need for strict processes to guarantee the integrity and completeness of the data presented and the possibility of physician overreliance on WFO. CONCLUSION: Participants generally reacted favorably to the prospect of WFO being integrated into the cancer treatment decision-making process, but with caveats regarding the comprehensiveness and accuracy of the data powering the system and the potential for giving WFO excessive emphasis in the decision-making process. Addressing patients' perspectives will be critical to ensuring the smooth integration of WFO into cancer care.


Asunto(s)
Oncología Médica/educación , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Grupos Focales , Humanos , Masculino , Persona de Mediana Edad , Estados Unidos , Adulto Joven
18.
Patient Educ Couns ; 101(3): 490-496, 2018 03.
Artículo en Inglés | MEDLINE | ID: mdl-28899713

RESUMEN

OBJECTIVE: To assess the interrater reliability (IRR) and usability of the Patient Education Materials Assessment Tool (PEMAT) and the relationship between PEMAT scores and readability levels. METHODS: One hundred ten materials (80 print, 30 audiovisual) were evaluated, each by two raters, using the PEMAT. IRR was calculated using Gwet's AC1 and summarized across items in each PEMAT domain (understandability and actionability) and by material type. A survey was conducted to solicit raters' experience using the PEMAT. Readability of each material was assessed using the SMOG Index. RESULTS: The median IRR was 0.92 for understandability and 0.93 for actionability across all relevant items, indicating good IRR. Eight PEMAT items had Gwet's AC1 values less than 0.81. PEMAT and SMOG Index scores were inversely correlated, with a Spearman's rho of -0.20 (p=0.081) for understandability and -0.15 (p=0.194) for actionability. While 92% of raters agreed the PEMAT was easy to use, survey results suggested specific items for clarification. CONCLUSION: While the PEMAT demonstrates moderate to excellent IRR overall, amendments to items with lower IRR may increase the usefulness of the tool. PRACTICE IMPLICATIONS: The PEMAT is a useful supplement to reading level alone in the assessment of educational materials.


Asunto(s)
Comprensión , Alfabetización en Salud/normas , Internet , Materiales de Enseñanza/normas , Recursos Audiovisuales , Humanos , Educación del Paciente como Asunto/normas , Lectura , Reproducibilidad de los Resultados
19.
Semin Oncol Nurs ; 34(1): 30-36, 2018 02.
Artículo en Inglés | MEDLINE | ID: mdl-29325815

RESUMEN

OBJECTIVES: To present the ways in which race, ethnicity, class, gender, and sexual orientation interact in the context of cancer risk, access to care, and treatment by health care providers. Cancer risk factors, access to care, and treatment for lesbian, gay, bisexual, and transgender (LGBT) patients are discussed within the context of intersectionality and cultural humility. DATA SOURCES: Peer reviewed articles, cancer organizations, and clinical practice. CONCLUSION: LGBT patients have multiple identities that intersect to create unique experiences. These experiences shape their interactions with the health care system with the potential for positive or negative consequences. More data is needed to describe the outcomes of those experiences and inform clinical practice. IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses have an obligation to acknowledge patients' multiple identities and use the practice of cultural humility to provide individualized, patient-centered care.


Asunto(s)
Características Culturales , Neoplasias/psicología , Neoplasias/terapia , Minorías Sexuales y de Género , Educación Continua/organización & administración , Femenino , Accesibilidad a los Servicios de Salud , Fuerza Laboral en Salud , Humanos , Masculino , Neoplasias/epidemiología , Neoplasias/enfermería , Relaciones Enfermero-Paciente , Atención Dirigida al Paciente , Factores de Riesgo , Estados Unidos/epidemiología
20.
Oncol Nurs Forum ; 44(6): 712-718, 2017 11 01.
Artículo en Inglés | MEDLINE | ID: mdl-29052666

RESUMEN

PURPOSE/OBJECTIVES: To describe patient engagement as a safety strategy from the perspective of hospitalized surgical patients with cancer.
. RESEARCH APPROACH: Qualitative, descriptive approach using grounded theory.
. SETTING: Memorial Sloan Kettering Cancer Center in New York, New York.
. PARTICIPANTS: 13 hospitalized surgical patients with cancer.
. METHODOLOGIC APPROACH: Grounded theory with maximum variation sampling.
. FINDINGS: Participants' perceptions regarding their engagement as a patient safety strategy were expressed through three overarching themes. CONCLUSIONS: Using direct messaging, such as "your safety" as opposed to "patient safety," and teaching patients specific behaviors to maintain their safety appeared to facilitate patient engagement and increase awareness of safety issues. Patients may be willing to accept some responsibility for ensuring their safety by engaging in behaviors that are intuitive or that they are clearly instructed to do; however, they described their involvement in their safety as a right, not an obligation.
. INTERPRETATION: Clear, inviting, multimodal communication appears to have the greatest potential to enhance patients' engagement in their safety. Nurses' ongoing assessment of patients' ability to engage is critical insofar as it provides the opportunity to encourage engagement without placing undue burden on them. By employing communication techniques that consider patients' perspectives, nurses can support patient engagement.


Asunto(s)
Alfabetización en Salud , Pacientes Internos/psicología , Participación del Paciente/psicología , Seguridad del Paciente/normas , Administración de la Seguridad/estadística & datos numéricos , Administración de la Seguridad/normas , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Teoría Fundamentada , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/enfermería , New York , Seguridad del Paciente/estadística & datos numéricos , Enfermería Posanestésica
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