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1.
Cancer ; 130(8): 1292-1302, 2024 Apr 15.
Artigo em Inglês | MEDLINE | ID: mdl-38117467

RESUMO

BACKGROUND: Few studies have attempted to characterize the cancer care experiences and outcomes of sexual and gender minority (SGM) patients with cancer, despite indications that this population experiences disparities across the cancer continuum. The current study used descriptive and exploratory methods to assess factors related to SGM cancer patients' satisfaction with cancer care and self-reported physical and mental health. METHODS: The authors designed a cross-sectional self-report online survey and recruited 3750 SGM cancer patient participants (mixed cancers; 85.6% White; 57% gay, 24% lesbian, 6.7% bisexual, and 6.2% transgender/gender nonbinary) using social media posts, partner organizations, and paid advertisements. They analyzed data using descriptive approaches and exploratory multivariate logistic regression models. RESULTS: Overall, 70.6% of participants reported feeling satisfied with the cancer care they received, 70% rated their physical health as very good or excellent, and 46% reported experiencing less than 5 days of poor mental health in the last month. In models including all participants, complete cases, and Black, Indigenous, and people of color (BIPOC), satisfaction with care was consistently associated with receiving treatment in an SGM welcoming environment. Physical health was consistently associated with having strong social support after cancer. Mental health was consistently associated with feeling safe disclosing SGM identities. CONCLUSIONS: SGM cancer patients treated in SGM-welcoming environments were over six times more likely to be satisfied with the care they received than those treated in nonwelcoming environments; this and other modifiable factors could be the target of further study and intervention.


Assuntos
Sobreviventes de Câncer , Neoplasias , Minorias Sexuais e de Gênero , Feminino , Humanos , Saúde Mental , Estudos Transversais , Comportamento Sexual/psicologia , Neoplasias/epidemiologia , Neoplasias/terapia , Nível de Saúde , Satisfação Pessoal
2.
Cancer ; 127(4): 639-647, 2021 02 15.
Artigo em Inglês | MEDLINE | ID: mdl-33136296

RESUMO

BACKGROUND: Supportive care interventions have demonstrated benefits for both informal and/or family cancer caregivers and their patients, but uptake generally is poor. To the authors' knowledge, little is known regarding the availability of supportive care services in community oncology practices, as well as engagement practices to connect caregivers with these services. METHODS: Questions from the National Cancer Institute Community Oncology Research Program (NCORP)'s 2017 Landscape Survey examined caregiver engagement practices (ie, caregiver identification, needs assessment, and supportive care service availability). Logistic regression was used to assess the relationship between the caregiver engagement outcomes and practice group characteristics. RESULTS: A total of 204 practice groups responded to each of the primary outcome questions. Only 40.2% of practice groups endorsed having a process with which to systematically identify and document caregivers, although approximately 76% were routinely using assessment tools to identify caregiver needs and approximately 63.7% had supportive care services available to caregivers. Caregiver identification was more common in sites affiliated with a critical access hospital (odds ratio [OR], 2.44; P = .013), and assessments were less common in safety-net practices (OR, 0.41; P = .013). Supportive care services were more commonly available in the Western region of the United States, in practices with inpatient services (OR, 2.96; P = .012), and in practices affiliated with a critical access hospital (OR, 3.31; P = .010). CONCLUSIONS: Although many practice groups provide supportive care services, fewer than one-half systematically identify and document informal cancer caregivers. Expanding fundamental engagement practices such as caregiver identification, assessment, and service provision will be critical to support recent calls to improve caregivers' well-being and skills to perform caregiving tasks.


Assuntos
Cuidadores/estatística & dados numéricos , Oncologia , Neoplasias/epidemiologia , Aceitação pelo Paciente de Cuidados de Saúde , Família/psicologia , Humanos , National Cancer Institute (U.S.) , Neoplasias/psicologia , Apoio Social , Estados Unidos/epidemiologia
3.
Breast Cancer Res Treat ; 187(1): 275-285, 2021 May.
Artigo em Inglês | MEDLINE | ID: mdl-33392843

RESUMO

PURPOSE: Fatigue and anxiety are common and significant symptoms reported by cancer patients. Few studies have examined the trajectory of multidimensional fatigue and anxiety, the relationships between them and with quality of life. METHODS: Breast cancer patients (n = 580) from community oncology clinics and age-matched controls (n = 364) completed fatigue and anxiety questionnaires prior to chemotherapy (A1), at chemotherapy completion (A2), and six months post-chemotherapy (A3). Linear mixed models (LMM) compared trajectories of fatigue /anxiety over time in patients and controls and estimated their relationship with quality of life. Models adjusted for age, education, race, BMI, marital status, menopausal status, and sleep symptoms. RESULTS: Patients reported greater fatigue and anxiety compared to controls at all time points (p's < 0.001, 35% clinically meaningful anxiety at baseline). From A1 to A2 patients experienced a significant increase in fatigue (ß = 8.3 95%CI 6.6,10.0) which returned to A1 values at A3 but remained greater than controls' (p < 0.001). General, mental, and physical fatigue subscales increased from A1 to A2 remaining significantly higher than A1 at A3 (p < 0.001). Anxiety improved over time (A1 to A3 ß = - 4.3 95%CI -2.6,-3.3) but remained higher than controls at A3 (p < 0.001). Among patients, fatigue and anxiety significantly predicted one another and quality of life. Menopausal status, higher BMI, mastectomy, and sleep problems also significantly predicted change in fatigue. CONCLUSION: Breast cancer patients experience significant fatigue and anxiety up to six months post-chemotherapy that is associated with worse quality of life. Future interventions should simultaneously address anxiety and fatigue, focusing on mental and physical fatigue subdomains.


Assuntos
Neoplasias da Mama , Qualidade de Vida , Ansiedade/epidemiologia , Ansiedade/etiologia , Neoplasias da Mama/complicações , Neoplasias da Mama/tratamento farmacológico , Neoplasias da Mama/epidemiologia , Depressão , Fadiga/epidemiologia , Fadiga/etiologia , Feminino , Humanos , Mastectomia
4.
Oncologist ; 25(12): 1032-1038, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32820842

RESUMO

BACKGROUND: American Society of Clinical Oncology guidelines recommend that patients ≥65 years of age starting chemotherapy undergo a geriatric assessment (GA) to inform and guide management; however, little is known about resources available in community oncology practices to implement these guidelines and to facilitate geriatric oncology research. MATERIALS AND METHODS: Oncology practices within the National Cancer Institute Community Oncology Research Program (NCORP) were electronically surveyed in 2017 regarding the availability of specialty providers, supportive services, and practice characteristics, as part of a larger survey of cancer care delivery research capacity. RESULTS: Of the 943 NCORP practices, 504 (54%) responded to the survey, representing 210 practice groups. The median new cancer cases per year ≥65 years of age was 457 (interquartile range 227-939). Of respondents, only 2.0% of practices had a fellowship-trained geriatric oncologist on staff. Geriatricians were available for consultation or comanagement at 37% of sites, and of those, only 13% had availability within the oncology clinic (5% of overall). Practice size of ≥1,000 new adult cancer cases (ages ≥18) per year was associated with higher odds (1.81, confidence interval 1.02-3.23) of geriatrician availability. Other multidisciplinary care professionals that could support GA were variably available onsite: social worker (84%), nurse navigator (81%), pharmacist (77%), dietician (71%), rehabilitative medicine (57%), psychologist (42%), and psychiatrist (37%). CONCLUSION: Only a third of community oncology practices have access to a geriatrician within their group and only 5% of community sites have access within the oncology clinic. Use of primarily self-administered GA tools that direct referrals to available services may be an effective implementation strategy for guideline-based care. IMPLICATIONS FOR PRACTICE: Only a minority of community oncology practices in the U.S. have access to geriatric specialty care. Developing models of care that use patient-reported measures and/or other geriatric screening tools to assess and guide interventions in older adults, rather than geriatric consultations, are likely the most practical methods to improve the care of this vulnerable population.


Assuntos
Neoplasias , Oncologistas , Idoso , Avaliação Geriátrica , Humanos , Oncologia , Neoplasias/epidemiologia , Neoplasias/terapia , Encaminhamento e Consulta
5.
Health Commun ; 35(10): 1289-1294, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-31167572

RESUMO

We examined whether the patient-provider relationship (PPR) is associated with Black survivors' health outcomes and whether this association was mediated by the quality of care. The outcome variables were survivors' quality of care and health outcome, and the predictor variable was PPR (communication, emotional support, time spent, and survivors' shared-decision making). A sample of 223 Black cancer survivors (age 63.0 ± 14.0 years) provided evaluable data. The most common cancer types reported by the participants were: gynecologic (32.7%), genitourinary (21.5%), and gastrointestinal cancers (11.2%). After controlling for covariates. A Structural Equation Model (SEM) showed that PPR was significantly associated with both health outcome (p = .015) and quality of care (p = .002). When PPR and quality of care were tested in the mediation model, the direct association between PPR and health outcome was attenuated, and it was no longer significant (b = -0.05, SE = 0.11, p = .65). However, indirectly, there was a strong association between PPR and health outcome through the quality of care (b = 0.22, SE = 0.08, p = .003), indicating full mediation. Providers' interpersonal relationships had a significant influence on the health of Black survivors, and this influence may be due to the increased positive perception of the quality of care. The implications of these findings for further research are discussed.


Assuntos
Negro ou Afro-Americano , Neoplasias , Idoso , Comunicação , Feminino , Humanos , Pessoa de Meia-Idade , Neoplasias/terapia , Avaliação de Resultados em Cuidados de Saúde , Relações Profissional-Paciente , Qualidade da Assistência à Saúde
6.
J Cancer Educ ; 35(2): 292-300, 2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-30612315

RESUMO

To examine whether (a) non-minority participants differed from racial minority participants in the understanding of biospecimens collected for research purposes, (b) patients differed from comparison group in their understanding of the ways their biospecimens could be used by researchers, and (c) participants received adequate information before consenting to donate blood for research studies. We analyzed cross-sectional data from female breast cancer patients scheduled to receive chemotherapy at the National Cancer Institute (NCI) Community Oncology Research Program (NCORP) clinical sites and a healthy comparison group. After reading a consent form related to biospecimens and consenting to participate in a clinical trial, participants' understanding of biospecimen collection was evaluated. Linear models were used to compare scores between non-minority and racial minority participants as well as cancer and non-cancer comparisons adjusting for possible confounding factors. A total of 650 participants provided evaluable data; 592 were non-minority (Caucasian) and 58 participants were a racial minority (71% Black and 29% other). There were 427 cancer patients and 223 comparisons. Non-minority participants scored higher than racial minorities on relevance-to-care items (diff. = 0.48, CI 0.13-0.80, p = 0.001). Comparison group scored higher than cancer patients on relevance-to-care items (diff. = 0.58, CI 0.37-0.78). A moderate number of the participants exhibited a poor understanding of biospecimen collection across all racial/ethnic backgrounds, but racial minority participants' scores remained lower in the relevance-to-care subscale even after adjusting for education and reading level. Differences were also noted among the patients and comparison group. Researchers should facilitate comprehension of biospecimen collection for all study participants, especially racial minority participants.


Assuntos
Bancos de Espécimes Biológicos/estatística & dados numéricos , Neoplasias da Mama/etnologia , Ensaios Clínicos como Assunto/estatística & dados numéricos , Compreensão , Etnicidade/educação , Etnicidade/psicologia , Disparidades nos Níveis de Saúde , Adulto , Negro ou Afro-Americano/educação , Idoso , Idoso de 80 Anos ou mais , Neoplasias da Mama/tratamento farmacológico , Neoplasias da Mama/psicologia , Estudos de Casos e Controles , Estudos Transversais , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Pessoa de Meia-Idade , Participação do Paciente , Manejo de Espécimes , População Branca/educação , Adulto Jovem
7.
Support Care Cancer ; 27(7): 2525-2532, 2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-30411237

RESUMO

PURPOSE: Despite indications that lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients have unique needs when seeking healthcare, the experiences of LGBTQ patients in the context of cancer care have not been fully explored. This qualitative study investigated recommendations offered by LGBTQ patients with cancer for improving cancer care. METHODS: Two hundred seventy-three LGBTQ people across the USA who had been diagnosed with cancer completed an online survey that included open-ended questions. Using responses to these questions, two researchers independently conducted open coding. A code book was generated collaboratively and the data were coded independently. Codes were clustered and refined and the data were independently re-coded. RESULTS: Five themes emerged. LGBTQ patients with cancer: (1) are affected by providers' LGBTQ-specific knowledge and skills, assumptions, and mistreatment; (2) negotiate disclosure of identities based on safety of clinical encounters; (3) have differing experiences based on multiple intersecting identities; (4) receive more effective care when members of their support networks are included; and (5) are self-advocates and undergo transformative experiences in the face of morbidity and marginalization. CONCLUSIONS: LGBTQ cancer survivors report challenges accessing competent cancer treatment. To address this, cancer care providers should provide safe clinical encounters, inquire about and respond professionally to patients' identities and identifiers, include chosen support people, provide care relevant to patients' gender identities, and address treatments' effects on sexuality. Training providers about diverse LGBTQ communities and acknowledging the strengths of LGBTQ patients with cancer may improve provider/patient relationships. Provider training could be created based on these principles.


Assuntos
Neoplasias/psicologia , Comportamento Sexual/psicologia , Minorias Sexuais e de Gênero/psicologia , Feminino , Humanos , Masculino , Pesquisa Qualitativa , Inquéritos e Questionários
8.
Cancer ; 124(23): 4504-4511, 2018 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-30291797

RESUMO

BACKGROUND: Supporting patients' decision making about clinical trials may enhance trial participation. To date, few theory-based interventions have been tested to address this issue. The objective of the current study was aimed to evaluate the effect of a multimedia psychoeducation (MP) intervention, relative to a print education (PE) intervention, on patients' decision support needs and attitudes about clinical trials. METHODS: Patients with cancer who were eligible for participation in a National Cancer Institute therapeutic cancer clinical trial were recruited through the nationwide University of Rochester Cancer Center National Cancer Institute Community Oncology Research Program from 2014 to 2016 and were randomized to the MP or PE intervention. Assessments at baseline (before intervention), postintervention, and at a 2-month follow-up visit included patients' decision support needs, attitudes regarding clinical trials, and clinical trial participation. RESULTS: In total, 418 patients with various types of cancer were recruited (ages 26-89 years). Relative to the PE intervention, the MP intervention did not significantly affect decision support needs. However, patients in the MP arm reported significantly more positive attitudes about clinical trials and were more likely to participate in a clinical trial than those in the PE arm (69% vs 62%; P = .01). Furthermore, an improvement in attitudes about clinical trials significantly mediated the effect of the intervention on participation in clinical trials. CONCLUSIONS: The MP intervention was able to improve patient attitudes toward clinical trials compared with the PE intervention, and this improvement led to increased rates of participation in trials. The MP intervention could be disseminated to improve attitudes about clinical trials among patients with cancer.


Assuntos
Neoplasias/psicologia , Educação de Pacientes como Assunto/métodos , Participação do Paciente/psicologia , Idoso , Tomada de Decisões , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Multimídia , National Cancer Institute (U.S.) , Folhetos , Estados Unidos
9.
Curr Oncol Rep ; 20(1): 5, 2018 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-29388071

RESUMO

PURPOSE OF REVIEW: To (1) explain what yoga is, (2) summarize published literature on the efficacy of yoga for managing cancer treatment-related toxicities, (3) provide clinical recommendations on the use of yoga for oncology professionals, and (4) suggest promising areas for future research. RECENT FINDINGS: Based on a total of 24 phase II and one phase III clinical trials, low-intensity forms of yoga, specifically gentle hatha and restorative, are feasible, safe, and effective for treating sleep disruption, cancer-related fatigue, cognitive impairment, psychosocial distress, and musculoskeletal symptoms in cancer patients receiving chemotherapy and radiation and cancer survivors. Clinicians should consider prescribing yoga for their patients suffering with these toxicities by referring them to qualified yoga professionals. More definitive phase III clinical trials are needed to confirm these findings and to investigate other types, doses, and delivery modes of yoga for treating cancer-related toxicities in patients and survivors.


Assuntos
Neoplasias/psicologia , Neoplasias/terapia , Yoga/psicologia , Animais , Ensaios Clínicos Fase I como Assunto , Ensaios Clínicos Fase III como Assunto , Humanos , Sobreviventes
10.
J Clin Psychopharmacol ; 36(1): 82-5, 2016 02.
Artigo em Inglês | MEDLINE | ID: mdl-26658264

RESUMO

OBJECTIVE: The aim of this study was to examine the effect of modafinil on depression via a secondary data analysis of a randomized clinical trial of modafinil for fatigue in cancer patients. The primary aim is to elucidate factors that contributed to the effectiveness of modafinil in the parent trial. METHODS: Five hundred forty-one cancer patients receiving chemotherapy and experiencing fatigue (Brief Fatigue Inventory [BFI] item 3 of ≥3) were randomized to receive 200 mg modafinil (n = 260) or placebo (n = 281) daily from baseline (cycle 2) to posttest (cycle 4). Patients completed the Center for Epidemiological Studies-Depression Scale (CES-D) and Profile of Mood States depression-dejection subscale at baseline and posttest. We used linear regression to address the hypothesis that modafinil would be associated with reduced depression, particularly in those experiencing severe fatigue (BFI ≥7). RESULTS: Modafinil did not have a significant effect on depression, even for those patients with severe fatigue. However, for subjects with severe fatigue (BFI ≥7), those receiving modafinil had lower depression scores than did control subjects. Modafinil significantly moderated the relationship between baseline fatigue and CES-D total scores (P = 0.04) and was marginally significant as a moderator for the relationship between baseline fatigue and Profile of Mood States depression-dejection subscale scores (P = 0.07). Modafinil also significantly moderated the relationship between baseline fatigue and CES-D positive affect subscale scores (P = 0.003), but not CES-D somatic, negative affect, or interpersonal subscale scores. CONCLUSIONS: Modafinil differentially impacts depression based on a patient's level of fatigue and reduced depressive symptoms only in those with extreme fatigue. This effect may be driven by increases in positive affective symptoms. These results have significant implications for intervention; in patients with high levels of fatigue, modafinil might also reduce depression. Future randomized clinical trials are needed to confirm these results.


Assuntos
Compostos Benzidrílicos/uso terapêutico , Depressão/tratamento farmacológico , Fadiga/tratamento farmacológico , Neoplasias/complicações , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Depressão/etiologia , Método Duplo-Cego , Fadiga/etiologia , Feminino , Humanos , Modelos Lineares , Masculino , Pessoa de Meia-Idade , Modafinila , Estudos Prospectivos , Promotores da Vigília/uso terapêutico , Adulto Jovem
11.
J Psychosoc Oncol ; 34(1-2): 28-38, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-26577277

RESUMO

Satisfaction with care is important to cancer survivors' health outcomes. Satisfaction with care is not equal for all cancer survivors, and sexual minority (i.e., lesbian, gay, and bisexual) cancer survivors may experience poor satisfaction with care. Data were drawn from the 2010 LIVESTRONG national survey. The final sample included 207 sexual minority cancer survivors and 4,899 heterosexual cancer survivors. Satisfaction with care was compared by sexual orientation, and a Poisson regression model was computed to test the associations between sexual orientation and satisfaction with care, controlling for other relevant variables. Sexual minority cancer survivors had lower satisfaction with care than did heterosexual cancer survivors (B = -0.12, SE = 0.04, Wald χ(2) = 9.25, p< .002), even controlling for demographic and clinical variables associated with care. Sexual minorities experience poorer satisfaction with care compared to heterosexual cancer survivors. Satisfaction with care is especially relevant to cancer survivorship in light of the cancer-related health disparities reported among sexual minority cancer survivors.


Assuntos
Grupos Minoritários/psicologia , Neoplasias/terapia , Satisfação do Paciente/estatística & dados numéricos , Comportamento Sexual/estatística & dados numéricos , Sobreviventes/psicologia , Adulto , Bissexualidade/psicologia , Bissexualidade/estatística & dados numéricos , Feminino , Pesquisas sobre Atenção à Saúde , Heterossexualidade/psicologia , Heterossexualidade/estatística & dados numéricos , Homossexualidade/psicologia , Homossexualidade/estatística & dados numéricos , Homossexualidade Feminina/psicologia , Homossexualidade Feminina/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Grupos Minoritários/estatística & dados numéricos , Modelos Estatísticos , Distribuição de Poisson , Análise de Regressão , Sobreviventes/estatística & dados numéricos , Pessoas Transgênero/psicologia , Pessoas Transgênero/estatística & dados numéricos
13.
JCO Oncol Pract ; 19(11): 959-966, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-37793079

RESUMO

In 2017, ASCO issued the position statement, Strategies for Reducing Cancer Health Disparities Among Sexual and Gender Minority Populations, outlining five areas of recommendations to address the needs of both sexual and gender minority (SGM, eg, LGBTQ+) populations affected by cancer and members of the oncology workforce who identify as SGM: (1) patient education and support; (2) workforce development and diversity; (3) quality improvement strategies; (4) policy solutions; and (5) research strategies. In 2019, ASCO convened the SGM Task Force to help actualize the recommendations of the 2017 position statement. The percentage of the US population who publicly identify as SGM has increased dramatically over the past few years. Although increased national interest in SGM health equity has accompanied a general interest in research, policy change, and education around diversity, equity, and inclusion, resulting from public concern over discrimination in health care against Black, Indigenous, and People of Color, this has been accompanied by a surge in discriminatory legislation directly impacting the SGM community. Although much progress has been made in advancing SGM cancer health equity since 2017, more progress is needed to reduce disparities and advance equity. The five focus areas outlined in the 2017 ASCO position statement remain relevant, as we must continue to promote and advance equity in quality improvement, workforce development, patient care, research, and SGM-affirming policies. This article reports on the progress toward reducing SGM cancer disparities and achieving equity across these five areas and identifies future directions for the work that still remains.


Assuntos
Equidade em Saúde , Neoplasias , Minorias Sexuais e de Gênero , Humanos , Neoplasias/epidemiologia , Neoplasias/terapia , Oncologia , Atenção à Saúde
14.
LGBT Health ; 9(1): 8-17, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34495755

RESUMO

The psychosocial needs and experiences of transgender and gender diverse (TGD) people is an understudied area of oncology research. In response to calls to action from past researchers, we conducted a scoping review, which included published and gray literature. From the included articles, the following key themes were identified: (1) lack of coordination between gender-affirming care and cancer care; (2) impact of cancer care on gender affirmation; (3) navigating gendered assumptions; (4) variation in providers' understanding of the needs of TGD patients; and (5) lack of TGD-specific cancer resources. Following this review, we consulted 18 key stakeholders with TGD-relevant personal and/or professional experience to gain further insight into issues that were not encompassed by the original themes. Based on these themes and stakeholder feedback, we offer recommendations for future research and clinical practice to increase awareness of the psychosocial needs of TGD people who have been diagnosed with cancer and to improve patient care.


Assuntos
Neoplasias , Pessoas Transgênero , Transexualidade , Identidade de Gênero , Humanos , Neoplasias/terapia , Pessoas Transgênero/psicologia
15.
Front Oncol ; 12: 873491, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35800052

RESUMO

Background: Lesbian, gay, bisexual, transgender, and other LGBTQIA cancer patients experience significant disparities in cancer-related outcomes. Their relationships may not be acknowledged in care systems designed to serve primarily heterosexual and cisgender (H/C) patients, and resources for partners and caregivers of H/C patients may not address the needs of LGBTQIA caregivers. Tailored interventions are needed to address disparities in LGBTQIA patients and caregivers. Methods: To address this gap, researchers from Karmanos Cancer Institute in Detroit, MI and Wilmot Cancer Institute in Rochester, NY worked with a cancer action council (CAC) of LGBTQIA stakeholders with lived experience of cancer in a community-academic partnership. This group used the ADAPT-ITT model to guide their process of assessing needs in this community, identifying evidence-based interventions that could be adapted to meet those needs, and beginning the process of adapting an existing intervention to meet the needs of a new population. Results: In the Assessment phase of the model, CAC members shared their own experiences and concerns related to cancer and identified cancer caregiving as a priority area for intervention. In the Decision-Making phase of the model, researchers and CAC members performed a review of the literature on interventions that reported outcomes for cancer caregiver, identifying 13 promising interventions. Each of these interventions was evaluated over a series of meetings using a scoring rubric. Based on this rubric, the FOCUS intervention was established as an appropriate target for adaptation to the LGBTQIA population. In the first stage of the Adaptation phase, CAC members reacted to the intervention content and identified principal components for adaptation. Conclusion: While the FOCUS intervention adaptation is still in process, this manuscript can serve as a guide for others establishing community-academic partnerships to adapt interventions, as well as those developing interventions and resources for LGBTQIA persons coping with cancer.

16.
Front Health Serv ; 2: 958274, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36925900

RESUMO

Background: Multiple national organizations recommend that cancer care providers and oncology practices be responsive to the needs of sexual and gender minority (SGM) patients. Oncology practices have attempted to incorporate this recommendation through SGM-focused cultural humility training interventions. It is unclear how best to adapt and implement such training across practices. This manuscript outlines one process for adapting a widely-used SGM training from The Fenway Institute to the context of oncology settings using the Framework for Reporting Adaptations and Modifications-Enhanced (FRAME) model. Methods: We conducted training sessions in two oncology care settings: a breast oncology center and a radiation oncology department. Subsequently, we conducted in-depth interviews with the three trainers involved in adapting The Fenway Institute's training to these two practices. Two independent investigators coded the interviews using components of the FRAME model as an analytic guide. Results: Training team members described the mechanisms by which FRAME adaption occurred both proactively and reactively; the importance of involving SGM-identified trainers of diverse backgrounds as well as champions from within oncology practices in which trainings were conducted; the importance of adapting both the context and content of training to be relevant to oncology audiences; and the ways in which fidelity to the core principles of improving health care for SGM patients was maintained throughout the process. Discussion: SGM cultural humility training for oncology providers and staff must undergo iterative adaptation to address the political and social context of specific practice environments and advocate for broader institutional culture change to achieve responsiveness to SGM health needs.

17.
JCO Oncol Pract ; 18(8): e1297-e1305, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35605183

RESUMO

PURPOSE: Lack of collection of sexual orientation and gender identity (SOGI) data in oncology practices limits assessment of sexual and gender minority (SGM) cancer patients' experiences and restricts opportunities to improve health outcomes of SGM patients. Despite national calls for routine SOGI data collection, individual-level and institutional barriers hinder progress. This study aimed to identify these barriers in oncology. METHODS: An online survey of ASCO members and others assessed SOGI data collection in oncology practices, institutional characteristics related to SOGI data collection, respondents' attitudes about SOGI data and SGM patients, and respondent demographics. Logistic regression calculated adjusted odds ratios (ORs) and 95% CIs for factors associated with sexual orientation (SO) and gender identity (GI) data collection. RESULTS: Less than half of 257 respondents reported institutional SO and GI data collection (40% and 46%, respectively), whereas over a third reported no institutional data collection (34% and 32%, respectively) and the remainder were unsure (21% and 17%, respectively). Most respondents felt that knowing both SO and GI was important for quality care (77% and 85%, respectively). Collection of SO and GI was significantly associated in separate models with leadership support (ORs = 8.01 and 6.02, respectively), having resources for SOGI data collection (ORs = 10.6 and 18.7, respectively), and respondents' belief that knowing patient SO and GI is important (ORs = 4.28 and 2.76, respectively). Themes from qualitative comments mirrored the key factors identified in our quantitative analysis. CONCLUSION: Three self-reinforcing factors emerged as critical drivers for collecting SOGI data: leadership support, dedicated resources, and individual respondents' attitudes. Policy mandates, implementation science, and clinical reimbursement are strategies to advance meaningful data collection and use in clinical practice.


Assuntos
Identidade de Gênero , Minorias Sexuais e de Gênero , Feminino , Humanos , Masculino , Oncologia , Comportamento Sexual , Inquéritos e Questionários
18.
J Cancer Surviv ; 2022 Oct 24.
Artigo em Inglês | MEDLINE | ID: mdl-36274101

RESUMO

PURPOSE: People with cancer commonly rely on loved ones as informal caregivers during and after treatment. Costs related to caregiving and their association with caregiver financial burden are not well understood. METHODS: Results include data from 964 caregivers of African American cancer survivors in the Detroit Research on Cancer Survivors (ROCS) cohort. Caregiving costs include those related to medications, logistics (e.g., transportation), and medical bills. Financial burden measures included caregiver financial resources, strain, and difficulty paying caregiving costs. Prevalence ratios (PR) and 95% confidence intervals (CI) of associations between costs and high financial burden were calculated using modified Poisson models controlling for caregiver characteristics. RESULTS: Caregivers included spouses (36%), non-married partners (8%), family members (48%), and friends (9%). Nearly two-thirds (64%) of caregivers reported costs related to caregiving. Logistical costs were the most common (58%), followed by medication costs (35%) and medical bills (17%). High financial hardship was reported by 38% of caregivers. Prevalence of high financial hardship was 52% (95% CI: 24%, 86%) higher among caregivers who reported any versus no caregiver costs. Associations between caregiver costs and high financial burden were evident for costs related to medications (PR: 1.33, 95% CI: 1.12, 1.58), logistics (PR: 1.57, 95% CI: 1.29, 1.92), and medical bills (PR: 1.57, 95% CI: 1.28, 1.92). CONCLUSIONS: Most caregivers experienced costs related to caregiving, and these costs were associated with higher prevalence of high caregiver financial burden. IMPLICATIONS FOR CANCER SURVIVORS: Informal caregivers experience financial hardship related to cancer along with cancer survivors.

19.
Patient Educ Couns ; 104(10): 2552-2558, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-33745786

RESUMO

OBJECTIVES: Understanding barriers to care for transgender people with cancer is necessary to increase oncologic care access. Little has been published regarding the experiences of transgender people with cancer. We sought to explore these experiences, assess barriers to oncologic care, and elucidate potential solutions. METHODS: Using an interpretive descriptive approach, we conducted two group interviews with transgender people who had been diagnosed with cancer and one with physicians who treat patients with cancer. Two investigators independently analyzed verbatim transcripts and, together, refined themes, resolving disagreements with consensus. Member checking and peer debriefing were used to confirm and elaborate on findings. RESULTS: Seven people who had been diagnosed with cancer and five physicians who treat people with cancer participated in group interviews. Themes included: (a) experiences with cancer may uniquely impact transgender people; (b) enforcement of clinician and systemic gender expectations creates barriers to cancer care; and (c) resistance to gender expectations may facilitate care. CONCLUSIONS: Gender expectations create barriers to oncologic care, which can be resisted by patients, clinicians, and institutions. IMPLICATIONS FOR PRACTICE: Clinicians and institutions should create gender-inclusive oncologic spaces, demonstrate allyship, and support patient autonomy to decrease barriers to care for transgender people with cancer.


Assuntos
Neoplasias , Pessoas Transgênero , Identidade de Gênero , Humanos , Motivação , Neoplasias/terapia
20.
Artigo em Inglês | MEDLINE | ID: mdl-33810269

RESUMO

The purpose of this study was to identify the perspectives from key leaders of community-based organizations (CBOs) and clinics serving people living with HIV on barriers and facilitators of smoking cessation among Latino smokers living with HIV. Semi-structured interviews were conducted in English and Spanish with 10 key leaders. Using a social ecological model, qualitative theoretical analysis was used to analyze the results. Participants identified barriers at the individual (e.g., low education level, HIV, and financial stress), interpersonal (e.g., language barriers, low social support), organizational (e.g., lack of smoking cessation resources and targeted interventions), community (e.g., HIV and mental health stigma), and policy (e.g., paperwork for insurance) level. Participants identified facilitators at the individual (e.g., high participation in trials, good medication adherence), interpersonal (e.g., no smoking in social circles), organizational (e.g., bilingual staff, culturally competent care), community (e.g., providing transportation, the coronavirus disease 2019 as an opportunity for smoking cessation), and policy level (e.g., existence of funding, comprehensive insurance programs). These results provide operational strategies to address smoking disparities among Latino smokers living with HIV. Further research is needed on how to integrate these perspectives into effective smoking cessation interventions.


Assuntos
COVID-19 , Infecções por HIV , Abandono do Hábito de Fumar , Hispânico ou Latino , Humanos , Pesquisa Qualitativa , SARS-CoV-2
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