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1.
Cancer Med ; 13(10): e7298, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38770644

RESUMO

INTRODUCTION: Despite the importance of clinical trial participation among cancer patients, few participate-and even fewer patients from ethnic and racial minoritized groups. It is unclear whether suggested approaches to increase accrual are successful. We conducted a scoping review to identify evidence-based approaches to increase participation in cancer treatment clinical trials that demonstrated clear increases in accrual. Notably, more stringent than other published reviews, only those studies with comparison data to measure a difference in accrual rates were included. METHODS: We searched PubMed/MEDLINE, Embase, CINAHL, and Web of Science for English-language articles published from January 1, 2012, to August 8, 2022. Studies were included if they were conducted in the United States, described single or multicomponent interventions, and provided data to measure accrual relative to baseline levels or that compared accrual rates with other interventions. RESULTS: Sixteen articles were included: six with interventions addressing patient barriers, two addressing provider barriers, seven describing institutional change, and one describing policy change. Key themes emerged, such as a focus on patient education, cultural competency, and building the capacity of clinics. Few studies provide comparative accrual data, making it difficult to identify with certainty any effective, evidence-based approaches for increasing accrual. Some patient- and system-level interventions studies showed modest increases in accrual primarily through pre-post measurement. CONCLUSION: Despite an extensive body of literature about the barriers that impede cancer treatment trial accrual, along with numerous recommendations for how to overcome these barriers, results reveal surprisingly little evidence published in the last 10 years on interventions that increase accrual relative to baseline levels or compared with other interventions. As clinical trials are a primary vehicle through which we improve cancer care, it is critical that evidence-based approaches are used to inform all efforts to increase accrual. Strategies for increasing participation in cancer clinical trials must be developed and rigorously evaluated so that these strategies can be disseminated, participation in trials can increase and become more equitable, and trial results can become more generalizable.


Assuntos
Ensaios Clínicos como Assunto , Neoplasias , Seleção de Pacientes , Humanos , Neoplasias/terapia , Participação do Paciente
2.
J Rural Health ; 40(1): 114-120, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37389421

RESUMO

PURPOSE: The proportion of cancer patients who participate in clinical trials (CTs) remains low, despite an understanding of barriers to enrollment. The barrier of rural residence is relevant to Veterans, who more commonly live in rural areas than non-Veterans. In this exploratory study, we aimed to examine geographic factors that could impede CT enrollment and to improve access to CTs for Veterans. METHODS: To assess the influence of rurality on the availability of CTs, we performed simulated searches using The Leukemia & Lymphoma Society's Clinical Trial Support Center (LLS CTSC) database. The LLS CTSC provides free CT education and navigation. In the second part of this study, we offered Veterans with blood cancers who received care at the Durham, Salem, Clarksburg, Sioux Falls, and Houston Veterans Administration (VA) Medical Centers referral to the LLS CTSC. FINDINGS: In simulated searches, we found significantly lower numbers of CTs open to enrollment in rural areas, compared to urban areas. In actual referrals, 33 Veterans were referred to the LLS CTSC, of which 15 (45%) lived in rural areas. Three Veterans enrolled in CTs. Patients declined referral or did not enroll in CTs for various reasons, including a desire to maintain care within the VA and/or to initiate therapy quickly. CONCLUSIONS: We identified "clinical trial deserts," which might hinder access and reduce CT participation for rural Veterans. Referral to the LLS CTSC promoted CT education and enrollment among a highly rural cohort of Veterans receiving care in the VA system.


Assuntos
Neoplasias Hematológicas , Veteranos , Humanos , População Rural , Estados Unidos , United States Department of Veterans Affairs , Ensaios Clínicos como Assunto
3.
PEC Innov ; 3: 100198, 2023 Dec 15.
Artigo em Inglês | MEDLINE | ID: mdl-37662692

RESUMO

Rationale: Parents of a child or adolescent (CA) or young adult (YA) diagnosed with a hematologic cancer often face uncertainty. Managing uncertainty is critical to reduce the psychosocial burden of illness-related stressors. Objective: This study sought to identify: 1) sources of uncertainty among parents of a child diagnosed with a hematologic cancer, 2) strategies used by parents to manage uncertainty, and 3) clinicians' responses to parents' online information-seeking approach to managing uncertainty. Methods: Parents of CAs/YAs diagnosed with a hematologic cancer within the past 1-18 months and living in the U.S. participated in an in-depth, semi-structured phone interview (n = 20). Data were analyzed thematically. Results: Parents reported uncertainty about treatment (options, efficacy, and side effects or risks) and uncertainty about the future (recurrence, whether worry would subside, and how to approach the child's future). Parents managed uncertainty by seeking information online, talking to clinicians, and joining support groups. Clinicians' responses to online information-seeking were described as supportive and unsupportive. Conclusion: Parents described struggling with uncertainty across the cancer continuum (from primary treatment to survivorship). Parents' psychosocial health may benefit from individual and systems level interventions that help address and manage uncertainty, especially interventions focusing on parent caregiver-clinician communication.

4.
Palliat Support Care ; : 1-7, 2023 Aug 22.
Artigo em Inglês | MEDLINE | ID: mdl-37606295

RESUMO

OBJECTIVES: This study investigated the challenges and support needs of adults aged 75 and older during and after treatment for a blood cancer to aid targeted supportive resource development. METHODS: Adults aged 75 and older with a blood cancer participated in in-depth, semi-structured interviews about challenges and unmet support needs. Participants recruited through The Leukemia & Lymphoma Society were (1) in treatment or previously in treatment for a blood cancer at age 75 or older and (2) living in the United States or its territories. A thematic analysis was conducted with findings compared between 2 groups: (1) chronic -living with a chronic blood cancer; (2) acute -living with an acute blood cancer or both an acute and chronic blood cancer. RESULTS: Participants (n = 50) ranged from 75 to 91 years old. Both groups described similar experiences and identified 5 challenges and support needs: (1) socioemotional impact, (2) activities of daily living and instrumental activities of daily living (ADLs/iADLs), (3) uncertainty management, (4) treatment-related stressors, and (5) COVID-19-related strain. Properties for these themes illustrate challenges and support needs, with some differences between groups. For instance, those living with a chronic blood cancer highlighted financial strain with treatment-related stressors, while those with an acute blood cancer focused more on iADLs. SIGNIFICANCE OF RESULTS: Findings inform an agenda for targeted resource development for older adults with a blood cancer nearing the end of the life span. Results demonstrate the need for supportive services and family communication interventions to help patients manage iADLs and navigate socioemotional needs and challenges.

5.
J Cancer Surviv ; 2023 Jul 07.
Artigo em Inglês | MEDLINE | ID: mdl-37420150

RESUMO

PURPOSE: Survivorship care often refers to continued healthcare after cancer treatment. Jacobsen and colleagues advocated to expand this to include patients on extended treatments and maintenance/prophylactic therapies, recognizing the care continuum as more complex. Transitions of care for individuals diagnosed with a blood cancer can be complicated. We sought to better understand blood cancer caregivers' experiences as their diagnosed family member encountered "survivorship transitions" across the continuum. METHODS: We conducted semi-structured interviews with adults caring for a parent or a child with a blood cancer. Caregivers were segmented into survivorship groups based on two transitional contexts: (1) when patients transitioned to a new line of therapy (active treatment or maintenance therapy); (2) when patients ended treatment. We conducted a thematic analysis and triangulated findings to compare transitional experiences. RESULTS: Caregivers in both groups reported experiencing a "new normal," which included personal, relational, and environmental adjustments. Caregivers in the treatment transitions group (n = 23) also described uncertainty challenges (e.g., losing their "safety net") and disrupted expectations (e.g., feeling "caught off guard" by challenges). Whereas caregivers in the end-of-treatment transitions group (n = 15) described relief coupled with worry (e.g., feeling hopeful yet worried). CONCLUSIONS: Survivorship transitions for caregivers are riddled with challenges that include difficult readjustments, uncertainty/worry, and unmet expectations. While there seems to be a cohesive experience of "survivorship transitions," each transition group revealed nuanced distinctions. IMPLICATIONS FOR CANCER SURVIVORS: Tailored supportive resources are needed for caregivers throughout survivorship transitions.

6.
Cancers (Basel) ; 15(12)2023 Jun 14.
Artigo em Inglês | MEDLINE | ID: mdl-37370787

RESUMO

Adult-child caregivers of an aging parent living with a blood cancer describe struggling to communicate with one another and within the family system. They may avoid critical care conversations, which may impede care and their ability to receive social support. We examined what approaches adult-child caregivers of a parent diagnosed with a blood cancer use to enhance their family communication, the topics they find most challenging to discuss, and the roles of openness and support. We used qualitative and quantitative approaches to analyze data from a larger online survey study. In partnership with the Leukemia & Lymphoma Society, we recruited 121 adult-child caregivers. Responses to one open-ended item were analyzed to capture strategies used to enhance communication with their parent and family. They reported utilizing digital communication modalities, prioritizing frequent communication, engaging in openness, establishing boundaries, kinkeeping, and enacting support. Within the quantitative data, we further explored two of these themes (openness and support) and their relationships to other variables using t-tests and regression analysis. Adult-child caregivers and diagnosed parents avoid talking about mortality and negative feelings. Openness in the family about cancer was linked to caregivers' perceptions of receiving social support. Findings demonstrate that cultivating openness between midlife adult children and diagnosed parents may enhance opportunities to receive support.

7.
J Clin Med ; 12(4)2023 Feb 18.
Artigo em Inglês | MEDLINE | ID: mdl-36836183

RESUMO

Chronic lymphocytic leukemia (CLL) caregivers play a central role in disease management-a role that has been heightened during the COVID-19 pandemic given the healthcare system's reliance on frontline family caregivers and CLL patients' increased risk of infection and mortality. Using a mixed-method design, we investigated the impact of the pandemic on CLL caregivers (Aim 1) and their perceived resource needs (Aim 2): 575 CLL caregivers responded to an online survey; 12 spousal CLL caregivers were interviewed. Two open-ended survey items were thematically analyzed and compared with interview findings. Aim 1 results showed that two years into the pandemic, CLL caregivers continue to struggle with coping with distress, living in isolation, and losing in-person care opportunities. Caregivers described experiencing increasing caregiving burden, realizing the vaccine may not work or didn't work for their loved one with CLL, feeling cautiously hopeful about EVUSHELD, and dealing with unsupportive/skeptical individuals. Aim 2 results indicate that CLL caregivers needed reliable, ongoing information about COVID-19 risk, information about and access to vaccination, safety/precautionary measures, and monoclonal infusions. Findings illustrate ongoing challenges facing CLL caregivers and provide an agenda to better support the caregivers of this vulnerable population during the COVID-19 pandemic.

8.
Fam Syst Health ; 41(2): 140-148, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-36222643

RESUMO

INTRODUCTION: An older parent's blood cancer diagnosis impacts the entire family system, including adult siblings, an often overlooked subsystem of the family. Yet, adult siblings are typically involved in their parents' care needs. We explored sibling-related experiences adult child caregivers identify while caring for a parent diagnosed with a blood cancer to capture information useful for caregiving intervention development. METHOD: Fifteen adult child caregivers with at least 1 sibling participated in an in-depth, semistructured interview. Participants were 87% white and 80% daughters. A majority of caregivers were in midlife (M age = 44), with parents diagnosed between age 56 and 90. A thematic analysis was conducted on transcripts using the constant comparative method. RESULTS: Caregivers described 3 types of sibling-related experiences that centered on (a) caregiving responsibilities (e.g., sharing/not sharing tasks; challenging feelings about lack of involvement); (b) expectations about the caregiver role (e.g., gender, family status, and birth order expectations); and (c) coping together and apart (e.g., receiving information together, enhanced relationships, divergent maladaptive coping). DISCUSSION: Findings illustrate how a parent's blood cancer diagnosis can enhance the sibling bond and family system as well as contribute to tension, particularly regarding the experiences of not sharing caregiving tasks or having divergent approaches to coping. Findings also provide insight into areas in which supportive interventions or resources are needed (e.g., helping siblings talk about caregiving involvement) to promote healthy family functioning after a blood cancer diagnosis. (PsycInfo Database Record (c) 2023 APA, all rights reserved).


Assuntos
Neoplasias Hematológicas , Irmãos , Adulto , Humanos , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Pais , Adaptação Psicológica , Filhos Adultos , Cuidadores
9.
JCO Oncol Pract ; 19(2): e167-e175, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36351207

RESUMO

PURPOSE: Patients with and survivors of hematologic malignancies are particularly vulnerable to COVID-19 disease and complications. This study examined patients' vaccination attitudes and behaviors and their correlates. METHODS: A two-wave survey was fielded in December 2020 and June 2021 among hematologic malignancy patients and survivors (N = 2,272). Demographic characteristics, intent to get vaccinated, vaccination status, attitudes toward vaccination, and level of trust in specific sources of information about COVID-19 vaccines were assessed. Descriptive statistics were calculated, and linear probability models were estimated to examine binary outcomes and their correlates. RESULTS: In December 2020, before COVID-19 vaccines were available, 73% stated they were likely or very likely to get vaccinated if an FDA-approved vaccine became available; however, in June 2021 over 90% reported being vaccinated. Being younger, unmarried, trusting local faith leaders, and not having a bachelor's degree or more were negatively associated with getting vaccinated. Among those hesitant in December 2020, those who expressed a distrust of vaccines in general were least likely to get vaccinated. Being vaccinated in June 2021 was positively associated with the degree to which respondents trust their oncologist, federal agencies, and pharmaceutical companies. Oncologists and primary care physicians were reported as the most trusted sources for information about vaccines. DISCUSSION: COVID-19 vaccine hesitancy remains a public policy concern even now, as additional boosters are recommended among vulnerable populations. Our findings suggest that patient trust in their treating physicians can play a critical role in promoting individual patient and public health goals.


Assuntos
COVID-19 , Neoplasias Hematológicas , Humanos , Vacinas contra COVID-19/uso terapêutico , COVID-19/complicações , COVID-19/epidemiologia , COVID-19/prevenção & controle , Confiança , Sobreviventes , Neoplasias Hematológicas/complicações , Neoplasias Hematológicas/terapia
10.
Psychooncology ; 31(7): 1212-1220, 2022 07.
Artigo em Inglês | MEDLINE | ID: mdl-35218278

RESUMO

OBJECTIVE: We examined the effects of the family communication environment (conversation orientation) on adult child caregivers' burden and clinical interactions and if the effects are mediated by openness to communicate about cancer, avoidant cancer communication, and social support (SS). METHOD: Caregivers of a parent diagnosed with a blood cancer (N = 121) completed an online survey of validated measures of conversation orientation (i.e., the extent to which families openly communicate), SS, cancer openness, avoidance, caregiver burden, clinical communication skills, and quality of clinical interactions (QCI). RESULTS: Conversation orientation had significant indirect effects on caregiver burden, mediated by SS (ß = -0.11, p < 0.001), as well as cancer openness and avoidance (ß = -0.07, p < 0.001). Conversation orientation also had significant indirect effects on caregivers' communication skills with a parent's clinician, mediated by avoidance (ß = 0.08, p < 0.01) and SS (ß = 0.06, p < 0.001). Finally, conversation orientation had significant indirect effects on caregivers' QCI mediated by avoidance (ß = 0.71, p < 0.05). CONCLUSIONS: Adult child caregivers whose families communicate more openly exhibit less caregiver burden and report better clinical interaction skills and perceived quality of the clinical interaction. Avoidance emerged as a key mediating factor. Caregivers from less open communication environments may benefit from interventions that help them navigate challenging but critical caregiving conversations.


Assuntos
Sobrecarga do Cuidador , Comunicação , Neoplasias Hematológicas , Relações Interpessoais , Adulto , Filhos Adultos , Cuidadores , Família , Neoplasias Hematológicas/terapia , Humanos , Apoio Social , Inquéritos e Questionários
11.
Palliat Support Care ; 20(1): 22-29, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-33890563

RESUMO

OBJECTIVES: The study examined the diagnosis experience of midlife family caregivers of a patient with a blood cancer, exploring similarities and differences between parent caregivers and adult-child caregivers. METHODS: Participants were between 30 and 65 years old and were family caregivers of a living patient with acute myeloid leukemia, acute lymphoblastic leukemia, or lymphoma. We conducted semi-structured interviews with parent caregivers (n = 20) and adult-child caregivers (n = 19) and a thematic analysis of the interview data. RESULTS: Both types of caregivers report the patient experiencing (1) mis- and missed diagnosis (facing delayed diagnosis or treatment and having symptoms dismissed or overlooked) and (2) emotional distress (being in shock and survival mode, struggling with uncertainty, and confronting mortality). Adult-child caregivers also experienced relational shifts in assuming control of their parent's care, sometimes despite geographic distance, and struggled to distribute the care burden among family members. SIGNIFICANCE OF RESULTS: Differences between the caregivers' experiences emerged based on the relational role and the patient's place in the lifespan. Findings can be used to inform the development of support resources to address the needs of each group.


Assuntos
Cuidadores , Neoplasias , Adulto , Filhos Adultos , Idoso , Cuidadores/psicologia , Família/psicologia , Humanos , Longevidade , Pessoa de Meia-Idade , Incerteza
12.
J Prev Health Promot ; 3(3): 271-299, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38566802

RESUMO

Low-income women of color receive fewer cancer screenings and have higher rates of depression, which can interfere with cancer screening participation. This study assessed the comparative effectiveness of two interventions for improving colorectal, breast, and cervical cancer screening participation and reducing depression among underserved women in Bronx, NY, with depression. This comparative effectiveness randomized controlled trial (RCT) with assessments at study entry, 6, and 12 months utilized an intent-to-treat statistical approach. Eligible women were aged 50 to 64, screened positive for depression, and were overdue for ≥ 1 cancer screening (colorectal, breast, and/or cervical). Participants were randomized to a collaborative depression care plus cancer screening intervention (CCI + PCM) or cancer screening intervention alone (PCM). Interventions were telephone-based, available in English or Spanish, delivered over 12 months, and facilitated by a skilled care manager. Cancer screening data were extracted from electronic health records. Depression was measured with a validated self-report instrument (PHQ-9). Seven hundred fifty seven women consented and were randomized (CCI + PCM, n = 378; PCM, n = 379). Analyses revealed statistically significant increases in up-to-date status for all three cancer screenings; depression improved in both intervention groups. There were no statistically significant differences between the interventions in improving cancer screening rates or reducing depression. CCI and PCM both improved breast, cervical, and colorectal cancer screening and depression in clinical settings in underserved communities; however, neither intervention showed an advantage in outcomes. Decisions about which approach to implement may depend on the nature of the practice and alignment of the interventions with other ongoing priorities and resources.

13.
JCO Oncol Pract ; 17(12): e1866-e1878, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-34077244

RESUMO

PURPOSE: There are numerous barriers to cancer clinical trial participation in the United States. This paper describes the approach and outcomes of The Leukemia & Lymphoma Society's Clinical Trial Support Center (CTSC), whose nurse navigators assist patients with a blood cancer and their oncologists by identifying all appropriate trials based on clinical data and patient preference, facilitating informed and shared decision making, and minimizing enrollment barriers. METHODS: Data on patients served from October 2017 to October 2019 were analyzed using bivariate and multivariate analyses to determine demographic and clinical characteristics associated with enrollment. Reasons for nonenrollment were examined. RESULTS: The CTSC opened 906 patient cases during this time frame. Among all US patients with a closed case (n = 750), the clinical trial enrollment rate was 16.1%. Among those with a known enrollment outcome after a trial search (n = 537), the enrollment rate was 22.5%. Multivariate analysis controlling for variables significant in bivariate analyses (insurance, treatment status, Eastern Cooperative Oncology Group performance status, and urban or rural residence) revealed that patients with Medicaid were less likely to enroll than those with private or commercial insurance (adjusted odds ratio, 0.054; CI, 0.003 to 0.899), and patients in treatment or maintenance were less likely to enroll than those relapsed or refractory to most recent therapy (adjusted odds ratio, 0.312; CI, 0.139 to 0.702). Primary reasons for nonenrollment were preference for standard of care (66.3%) and patient passed away (16.1%). CONCLUSION: The CTSC is an effective, replicable model for addressing multilevel barriers to clinical trial participation. The findings highlight the need to increase opportunities for trial participation sooner after diagnosis and among patients with Medicaid.


Assuntos
Neoplasias Hematológicas , Neoplasias , Humanos , Medicaid , Neoplasias/terapia , Preferência do Paciente , Estados Unidos
14.
Transl Behav Med ; 11(5): 1187-1197, 2021 05 25.
Artigo em Inglês | MEDLINE | ID: mdl-34042962

RESUMO

The COVID-19 pandemic likely exacerbated caregiving challenges for caregivers of parents diagnosed with a blood cancer. Providing care during a public health crisis presents a complex web of uncertainties regarding cancer care, personal health, and COVID-19 risk. Identifying caregivers' uncertainty experiences during the COVID-19 pandemic can be a first step in learning where to direct resources or alter policies to ensure that they can not only perform their caregiver role but also cope in health-promoting ways. Using uncertainty management theory, this study explored how the pandemic has impacted adult child caregivers' experiences caring for a parent diagnosed with a blood cancer, as well as their experiences of uncertainty and uncertainty management. As part of a larger study on blood cancer caregivers' needs, a survey was administered from March 30 to June 1, 2020, to recruit caregivers through the Leukemia and Lymphoma Society. A qualitative and quantitative content analysis was conducted on open-ended responses from 84 caregivers. Caregivers described changes illustrating the complexity of providing care during a pandemic: (a) increased fears and uncertainty-related distress, b) reduced in-person care opportunities, (c) increased isolation, and (d) enhanced family communication. Caregivers with parents diagnosed with acute blood cancers used significantly more uncertainty management strategies and had more sources of uncertainty than caregivers with parents living with chronic blood cancer types. Findings highlight the need for supportive services to help caregivers manage uncertainty and improve their capacity to provide care in an unpredictable global health crisis. Such support may reduce poor psychosocial outcomes.


Assuntos
COVID-19 , Cuidadores/psicologia , Neoplasias Hematológicas/terapia , Adaptação Psicológica , Adulto , Humanos , Avaliação das Necessidades , Pandemias , Inquéritos e Questionários , Incerteza
15.
Support Care Cancer ; 29(6): 3069-3076, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33051829

RESUMO

PURPOSE: Research on the impact of family cancer caregiving is primarily dyadic in focus. How caregiving affects the larger family system is less understood, yet knowing this is vital to developing supportive resources for caregivers, patients, and their families. To better understand how blood cancer caregiving impacts the family system, we explored the experiences of adult child caregivers of diagnosed parents and parent caregivers of diagnosed children. METHODS: We conducted semi-structured interviews with 39 midlife parent and adult child caregivers of patients with leukemia or lymphoma. Using a family systems theory lens, we conducted a thematic analysis using the constant comparative method to identify how caregiving impacts the larger family system. RESULTS: Caregivers ranged from age 30 to 64 (M = 43). They described four ways that caregiving impacted themselves and the larger family system: (1) disruption of home life, (2) emotional (dis)connection, (3) juggling competing roles, and (4) developing resiliency and intimacy. Perspectives within each category differed based on their relational role to the patient or in the broader family. CONCLUSIONS: Themes identify ways to provide support to both caregiver types. Support care resources could help families navigate gains and losses impacting the family system after a blood cancer diagnosis. Both caregiver types described experiencing (and/or their family experiencing) a loss in relational connection, feeling alone, and members distancing themselves. Both caregiver types also described gains in family functioning, like strengthened bonds and togetherness. Findings validate the need for family-centered support with key areas to address for healthy family functioning.


Assuntos
Cuidadores/psicologia , Família/psicologia , Neoplasias Hematológicas/psicologia , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
16.
J Cancer Educ ; 36(5): 1039-1044, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-32157570

RESUMO

Participation in cancer clinical trials (CCTs) is critical to improving cancer treatments and quality of care. However, rates of patient participation remain low. Research has shown that a trusted physician recommendation is an important influence on patients' decisions to enroll in a CCT. Improving primary care providers' (PCPs') knowledge, attitudes, and beliefs about CCTs is a promising potential path for improving CCT participation. The aim of this pilot study was to test the effect of an online educational course for PCPs about clinical trials on primary care providers' knowledge, attitudes and beliefs, and behavior. Forty-one PCPs in the New York City area participated in a 1-h online training session on cancer clinical trials. These PCPs had self-selected to complete the training in a previous survey. The objectives of the training module were to (1) educate the PCPs about clinical trials, with a focus on overcoming misconceptions; and (2) discuss roles of PCPs in partnering with oncologists to help patients gain access to clinical trials. The training module included didactics, audio excerpts, and case descriptions. Participants completed a pre-test immediately before taking the course, a post-test immediately after taking the course, and a 3-month post-course survey. All three assessments included a general T/F knowledge test, a 7-item attitude/belief scale, and a knowledge test focused specifically on local resources and access for clinical trials. Forty-one PCPs completed the module and the pre-post course surveys. Eighty percent (33/41) also completed the 3-month post-course survey. General knowledge and local knowledge increased significantly (p < .05) from pre- to post-course. At 3 months post-training, both general and local knowledge scores remained significantly increased from baseline. For those who completed the 3-month post-course survey, attitudes and beliefs increased significantly from pre- to post-course, but this change was not sustained at 3 months post-training. At 3 months post-training, 52% of the PCPs who had an interaction with a recently diagnosed cancer patient reported speaking with patients about CCTs as a result of the training. A brief online course showed significant and sustained improvement in PCPs' general and local knowledge about cancer clinical trials, which translated into self-reported behavior change. Future dissemination of the course and further research into its impact are important next steps.


Assuntos
Neoplasias , Médicos de Atenção Primária , Atitude do Pessoal de Saúde , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Neoplasias/terapia , Projetos Piloto , Inquéritos e Questionários
17.
J Cancer Surviv ; 14(1): 43-47, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31741249

RESUMO

PURPOSE: This study explored survivorship services provided at National Cancer Institute (NCI)-Designated Cancer Centers for patients with blood cancer to identify gaps in services, unmet needs, and barriers to access. METHODS: Qualitative interviews with national experts and blood cancer survivors aided the development of an online survey distributed to a survivorship clinic director or staff at 63 NCI-Designated Cancer Centers. RESULTS: Staff at 71% of centers participated (n = 45). Survivorship needs identified as most important-follow-up for health issues due to treatment side effects, healthy behavior programming, and individual mental health services-were reported as offered at 91%, 84%, and 84% of centers, respectively. However, respondents indicated that satellite centers offered these services 20% of the time or less. Forty-five percent reported that they believed the majority of survivorship needs of patients with blood cancer who have completed treatment were not adequately met by their center or other organizations. Most frequently indicated barriers to accessing services were distance from the patient's home and lack of primary care physician adherence to best practices or knowledge of late/long-term effects. CONCLUSIONS: To enhance survivorship services for patients with blood cancer, NCI-Designated Cancer Centers and non-profits should focus on increasing access to services for survivors who do not reside near the main center and improving coordination between oncology, mental health, and primary care. IMPLICATIONS FOR CANCER SURVIVORS: Understanding survivorship service delivery is an important step toward developing solutions that help survivors seek and access support at their site of care and from other non-profit organizations.


Assuntos
Atenção à Saúde/métodos , Neoplasias Hematológicas/mortalidade , Sobrevivência , Feminino , Humanos , National Cancer Institute (U.S.) , Estados Unidos
18.
Prog Community Health Partnersh ; 13(3): 273-282, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31564668

RESUMO

BACKGROUND: Collaborations between community health and academic partners hold promise for improving community health through research. OBJECTIVES: To develop, implement, and evaluate a partnership to build capacity for community-based research. METHODS: Development of the partnership was based on a participatory model that aimed to nurture strong infrastructure, clear communication, and trust between partners. Research training was individualized to assessed needs. Methods of evaluation included online surveys of partnership members comparing years 1 and 2 and appreciative inquiry (AI) interviews in year 3.Results and Lessons Learned: Course corrections from year 1 responses were implemented, and reflected in improvements on the second survey. Interviews highlighted mutual benefits of infrastructure developed in partnership; threats to sustainability were identified. Lessons learned included the importance of early course correction based on feedback, opportunities for communication, and building trust and a shared language. CONCLUSIONS: Partnerships develop through commitment and trust. Routine assessments and course correction may enable productive research partnerships.


Assuntos
Serviços de Saúde Comunitária/organização & administração , Pesquisa Participativa Baseada na Comunidade/organização & administração , Relações Comunidade-Instituição , Pesquisa sobre Serviços de Saúde/organização & administração , Universidades/organização & administração , Serviços de Saúde Comunitária/métodos , Pesquisa Participativa Baseada na Comunidade/métodos , Acessibilidade aos Serviços de Saúde/organização & administração , Pesquisa sobre Serviços de Saúde/métodos , Humanos , Relações Interinstitucionais , Cidade de Nova Iorque , Qualidade da Assistência à Saúde/organização & administração
19.
Clin Trials ; 14(5): 518-525, 2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-28693389

RESUMO

BACKGROUND/AIMS: Cancer clinical trials give patients access to state-of-the-art treatments and facilitate the translation of findings into mainstream clinical care. However, patients from racial and ethnic minority groups remain underrepresented in clinical trials. Primary care physicians are a trusted source of information for patients, yet their role in decision-making about cancer treatment and referrals to trial participation has received little attention. The aim of this study was to determine physicians' knowledge, attitudes, and beliefs about cancer clinical trials, their experience with trials, and their interest in appropriate training about trials. METHODS: A total of 613 physicians in the New York City area primarily serving patients from ethnic and racial minority groups were invited via email to participate in a 20-min online survey. Physicians were asked about their patient population, trial knowledge and attitudes, interest in training, and personal demographics. Using calculated scale variables, we used descriptive statistical analyses to better understand physicians' knowledge, attitudes, and beliefs about trials. RESULTS: A total of 127 physicians completed the survey. Overall, they had low knowledge about and little experience with trials. However, they generally had positive attitudes toward trials, with 41.4% indicating a strong interest in learning more about their role in trials, and 35.7% indicating that they might be interested. Results suggest that Black and Latino physicians and those with more positive attitudes and beliefs were more likely to be interested in future training opportunities. CONCLUSION: Primary care physicians may be an important group to target in trying to improve cancer clinical trial participation among minority patients. Future work should explore methods of educational intervention for such interested providers.


Assuntos
Atitude do Pessoal de Saúde , Ensaios Clínicos como Assunto , Conhecimentos, Atitudes e Prática em Saúde , Neoplasias/terapia , Médicos de Atenção Primária/psicologia , Adulto , Negro ou Afro-Americano/psicologia , Negro ou Afro-Americano/estatística & dados numéricos , Asiático/psicologia , Asiático/estatística & dados numéricos , Feminino , Hispânico ou Latino/psicologia , Hispânico ou Latino/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Cidade de Nova Iorque , Pesquisa Qualitativa , Encaminhamento e Consulta , Inquéritos e Questionários , População Branca/psicologia , População Branca/estatística & dados numéricos
20.
J Oncol Pract ; 12(11): 1101-1113, 2016 11.
Artigo em Inglês | MEDLINE | ID: mdl-27577619

RESUMO

Cancer care is highly complex and suffers from fragmentation and lack of coordination across provider specialties and clinical domains. As a result, patients often find that they must coordinate care on their own. Coordinated delivery teams may address these challenges and improve quality of cancer care. Task interdependence is a core principle of rigorous teamwork and is essential to addressing the complexity of cancer care, which is highly interdependent across specialties and modalities. We examined challenges faced by a patient with early-stage breast cancer that resulted from difficulties in understanding and managing task interdependence across clinical domains involved in this patient's care. We used team science supported by the project management discipline to discuss how various task interdependence aspects can be recognized, deliberately designed, and systematically managed to prevent care breakdowns. This case highlights how effective task interdependence management facilitated by project management methods could markedly improve the course of a patient's care. This work informs efforts of cancer centers and practices to redesign cancer care delivery through innovative, practical, and patient-centered approaches to management of task interdependence in cancer care. Future patient-reported outcomes research will help to determine optimal ways to engage patients, including those who are medically underserved, in managing task interdependence in their own care.


Assuntos
Neoplasias da Mama/terapia , Equipe de Assistência ao Paciente/organização & administração , Adulto , Atenção à Saúde/organização & administração , Feminino , Humanos , Medicare , Terapia Neoadjuvante , Estados Unidos
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