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1.
BMC Cancer ; 23(1): 1127, 2023 Nov 18.
Artigo em Inglês | MEDLINE | ID: mdl-37980511

RESUMO

BACKGROUND: Bladder cancer poses a significant public health burden, with high recurrence and progression rates in patients with non-muscle-invasive bladder cancer (NMIBC). Current treatment options include bladder-sparing therapies (BST) and radical cystectomy, both with associated risks and benefits. However, evidence supporting optimal management decisions for patients with recurrent high-grade NMIBC remains limited, leading to uncertainty for patients and clinicians. The CISTO (Comparison of Intravesical Therapy and Surgery as Treatment Options) Study aims to address this critical knowledge gap by comparing outcomes between patients undergoing BST and radical cystectomy. METHODS: The CISTO Study is a pragmatic, prospective observational cohort trial across 36 academic and community urology practices in the US. The study will enroll 572 patients with a diagnosis of recurrent high-grade NMIBC who select management with either BST or radical cystectomy. The primary outcome is health-related quality of life (QOL) at 12 months as measured with the EORTC-QLQ-C30. Secondary outcomes include bladder cancer-specific QOL, progression-free survival, cancer-specific survival, and financial toxicity. The study will also assess patient preferences for treatment outcomes. Statistical analyses will employ targeted maximum likelihood estimation (TMLE) to address treatment selection bias and confounding by indication. DISCUSSION: The CISTO Study is powered to detect clinically important differences in QOL and cancer-specific survival between the two treatment approaches. By including a diverse patient population, the study also aims to assess outcomes across the following patient characteristics: age, gender, race, burden of comorbid health conditions, cancer severity, caregiver status, social determinants of health, and rurality. Treatment outcomes may also vary by patient preferences, health literacy, and baseline QOL. The CISTO Study will fill a crucial evidence gap in the management of recurrent high-grade NMIBC, providing evidence-based guidance for patients and clinicians in choosing between BST and radical cystectomy. The CISTO study will provide an evidence-based approach to identifying the right treatment for the right patient at the right time in the challenging clinical setting of recurrent high-grade NMIBC. TRIAL REGISTRATION: ClinicalTrials.gov, NCT03933826. Registered on May 1, 2019.


Assuntos
Neoplasias não Músculo Invasivas da Bexiga , Neoplasias da Bexiga Urinária , Humanos , Adjuvantes Imunológicos/uso terapêutico , Administração Intravesical , Vacina BCG/uso terapêutico , Cistectomia , Estudos Multicêntricos como Assunto , Invasividade Neoplásica , Recidiva Local de Neoplasia/tratamento farmacológico , Estudos Observacionais como Assunto , Estudos Prospectivos , Qualidade de Vida , Neoplasias da Bexiga Urinária/tratamento farmacológico , Neoplasias da Bexiga Urinária/cirurgia , Ensaios Clínicos Pragmáticos como Assunto
2.
Cancer ; 128(1): 103-111, 2022 Jan 01.
Artigo em Inglês | MEDLINE | ID: mdl-34495550

RESUMO

BACKGROUND: Patient-centered approaches to research design are particularly important for diseases with complex treatment decision-making, such as recurrent, high-grade non-muscle-invasive bladder cancer (NMIBC). The objective of this article is to describe patient and public involvement (PPI) in designing a large, pragmatic observational trial and to articulate barriers, challenges, and lessons learned for future design. METHODS: Through multistakeholder involvement, a large, pragmatic observational trial was designed to investigate the outcomes of high-risk, recurrent NMIBC, and it was titled Comparison of Intravesical Therapy and Surgery as Treatment Options for Bladder Cancer (CISTO). CISTO's design used the Guidance for Reporting Involvement of Patients and the Public 2 reporting checklist for PPI and built on prior engagement infrastructure in partnership with the Bladder Cancer Advocacy Network. RESULTS: CISTO's PPI began with research prioritization to identify the highest priority questions facing patients with NMIBC. A pragmatic observational study design was selected and refined through stakeholder input. PPI included patients and caregivers organized into an advocate advisory board and clinicians, researchers, payers, and industry representatives organized into an external advisory board. An engagement plan was created to define the stages of PPI and the level and nature of the involvement of each group. PPI was measured quantitatively and qualitatively through evaluation surveys and iterative feedback from board members, with changes made for continuous improvement. CONCLUSIONS: Through intentional PPI, CISTO aims to produce pragmatic and generalizable results that will allow patients to make informed decisions for recurrent, high-risk NMIBC based on their personal experiences. LAY SUMMARY: Involving patients and other stakeholders in research ensures that it reflects the outcomes that matter most to them. This is especially important when research focuses on conditions in which patients face difficult decisions about treatment options. This article describes the key role that stakeholders played in shaping the Comparison of Intravesical Therapy and Surgery as Treatment Options for Bladder Cancer (CISTO) study. It compares treatments for recurrent noninvasive bladder cancer and describes how stakeholders were engaged to design and develop the study and the practices that supported their involvement.


Assuntos
Neoplasias da Bexiga Urinária , Humanos , Recidiva Local de Neoplasia/terapia , Participação do Paciente , Pesquisadores , Bexiga Urinária , Neoplasias da Bexiga Urinária/terapia
3.
Support Care Cancer ; 30(8): 7015-7020, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-35583826

RESUMO

PURPOSE: We sought to describe patient experiences during COVID-19 related delays in urologic cancer treatment. METHODS: We conducted a mixed methods study with an explanatory-sequential design. Survey findings are presented here. Patients from a Midwestern Cancer Center and the Bladder Cancer Advocacy Network (BCAN) self-reported via survey their experience of treatment delay, patient-provider communication, and coping strategies. We quantified patient distress with an ordinal scale (0-10), based on the National Comprehensive Cancer Network Distress Thermometer (NCCN-DT). RESULTS: Forty-four patients with bladder, prostate, and kidney cancers consented to the survey. Most individuals were male (n = 29; 66%) and older than 61 years of age (n = 34; 77%). Median time since diagnosis was 6 months. Dominant reactions to treatment delay included fear that cancer would progress (n = 22; 50%) and relief at avoiding COVID-19 exposure (n = 19; 43%). Most patients reported feeling that their providers acknowledged their emotions (n = 31; 70%), yet 23 patients (52%) did not receive follow-up phone calls and only 24 (55%) felt continually supported by their providers. Patients' median distress level was 5/10 with 68% (n = 30) of patients reaching a clinically significant level of distress (≥ 4). Thematically grouped suggestions for providers included better communication, more personalized support, and better patient education. CONCLUSION: During the COVID-19 pandemic, a high proportion of urologic cancer patients reached a clinically significant level of distress. While they felt concern from providers, they desired more engagement and personalized care.


Assuntos
Tratamento Farmacológico da COVID-19 , Neoplasias Urológicas , Feminino , Humanos , Masculino , Oncologia , Pandemias , Neoplasias Urológicas/terapia
4.
Eur J Cancer Care (Engl) ; 31(6): e13677, 2022 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-35942930

RESUMO

OBJECTIVE: To understand experiences of patients with genitourinary cancer who experienced delayed cancer care due to the COVID-19 pandemic. METHODS: We conducted a mixed methods study with an explanatory sequential design. Qualitative findings are reported here. Patients with muscle invasive bladder, advanced prostate or kidney cancer were eligible. Participants were selected for interviews if they self-reported low (0-3/10) or high (6-10/10) levels of distress on a previous survey. Participants were interviewed about their experiences. Interviews were transcribed, coded and categorised using thematic data analysis methodology. RESULTS: Eighteen patients were interviewed. Seven had prostate cancer, six bladder cancer and five kidney cancer. Six themes were derived from the interviews: (1) arriving at cancer diagnosis was hard enough, (2) response to treatment delay, (3) labelling cancer surgery as elective, (4) fear of COVID-19 infection, (5) quality of patient-provider relationship and communication and (6) what could have been done differently. CONCLUSION: These findings offer insight into the concerns of patients with genitourinary cancers who experienced treatment delays due to COVID-19. This information can be applied to support patients with cancers more broadly, should treatment delays occur in the future.


Assuntos
COVID-19 , Neoplasias Renais , Neoplasias Urogenitais , Neoplasias Urológicas , Urologia , Masculino , Humanos , Pandemias , Neoplasias Urológicas/terapia , Neoplasias Urogenitais/terapia , Pesquisa Qualitativa , Neoplasias Renais/terapia
5.
Cancer ; 124(15): 3136-3144, 2018 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-29727033

RESUMO

BACKGROUND: Patient-centered research requires the meaningful involvement of patients and caregivers throughout the research process. The objective of this study was to create a process for sustainable engagement for research prioritization within oncology. METHODS: From December 2014 to 2016, a network of engaged patients for research prioritization was created in partnership with the Bladder Cancer Advocacy Network (BCAN): the BCAN Patient Survey Network (PSN). The PSN leveraged an online bladder cancer community with additional recruitment through print advertisements and social media campaigns. Prioritized research questions were developed through a modified Delphi process and were iterated through multidisciplinary working groups and a repeat survey. RESULTS: In year 1 of the PSN, 354 patients and caregivers responded to the research prioritization survey; the number of responses increased to 1034 in year 2. The majority of respondents had non-muscle-invasive bladder cancer (NMIBC), and the mean time since diagnosis was 5 years. Stakeholder-identified questions for noninvasive, invasive, and metastatic disease were prioritized by the PSN. Free-text questions were sorted with thematic mapping. Several questions submitted by respondents were among the prioritized research questions. A final prioritized list of research questions was disseminated to various funding agencies, and a highly ranked NMIBC research question was included as a priority area in the 2017 Patient-Centered Outcomes Research Institute announcement of pragmatic trial funding. CONCLUSIONS: Patient engagement is needed to identify high-priority research questions in oncology. The BCAN PSN provides a successful example of an engagement infrastructure for annual research prioritization in bladder cancer. The creation of an engagement network sets the groundwork for additional phases of engagement, including design, conduct, and dissemination. Cancer 2018. © 2018 American Cancer Society.


Assuntos
Pesquisa Biomédica/tendências , Oncologia , Neoplasias da Bexiga Urinária/epidemiologia , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados da Assistência ao Paciente , Participação do Paciente , Assistência Centrada no Paciente , Bexiga Urinária/metabolismo , Bexiga Urinária/patologia , Neoplasias da Bexiga Urinária/genética , Neoplasias da Bexiga Urinária/patologia
6.
Urol Oncol ; 42(2): 29.e17-29.e22, 2024 02.
Artigo em Inglês | MEDLINE | ID: mdl-37993341

RESUMO

PURPOSE: To quantify patient reported treatment burden while receiving intravesical therapy for bladder cancer and to survey patient perspectives on in-home intravesical therapy. MATERIALS AND METHODS: We conducted a cross-sectional survey of the Bladder Cancer Advocacy Network Patient Survey Network. Survey questions were developed by investigators, then iteratively revised by clinician and patient advocates. Eligible participants had to have received at least 1 dose of intravesical therapy delivered in an ambulatory setting. RESULTS: Two hundred thirty-three patients responded to the survey with median age of 70 years (range 33-88 years). Two-thirds of respondents (66%, 151/232) had received greater than 12 bladder instillations. A travel time of >30 minutes to an intravesical treatment facility was reported by 55% (126/231) of respondents. Fifty-six percent (128/232) brought caregivers to their appointments, and 36% (82/230) missed work to receive treatment. Sixty-one respondents (26%) felt the process of receiving bladder instillations adversely affected their ability to perform regular daily activities. Among those surveyed, 72% (168/232) reported openness to receiving in-home intravesical instillations and 54% (122/228) answered that in-home instillations would make the treatment process less disruptive to their lives. CONCLUSIONS: Bladder cancer patients reported considerable travel distances, time requirements, and need for caregiver support when receiving intravesical therapy. Nearly three-quarters of survey respondents reported openness to receiving intravesical instillations in their home, with many identifying potential benefits for home over clinic-based therapy.


Assuntos
Neoplasias da Bexiga Urinária , Humanos , Adulto , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Neoplasias da Bexiga Urinária/tratamento farmacológico , Administração Intravesical , Medidas de Resultados Relatados pelo Paciente , Vacina BCG/uso terapêutico , Adjuvantes Imunológicos/uso terapêutico
7.
Urol Oncol ; 41(2): 108.e1-108.e9, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36529652

RESUMO

OBJECTIVES: Palliative care is underutilized amongst patients with bladder cancer despite guideline recommendations and known benefits. In order to uncover potential access barriers, we sought to describe patient and caregiver knowledge, attitudes and experiences surrounding palliative care. METHODS: We surveyed 272 patients with bladder cancer and their caregivers through the Bladder Cancer Advocacy Network Patient Survey Network. In addition to collecting demographic, socioeconomic, and clinical characteristics, previously studied and validated questionnaires on palliative care knowledge and beliefs were administered. Patients and caregivers were also queried regarding their experiences with palliative care consultation. RESULTS: Survey respondents demonstrated highly accurate knowledge of palliative care services. Attitudes and beliefs surrounding palliative care were overall positive. Caregivers demonstrated better knowledge and more positive beliefs of palliative care compared to patients. Despite an overall positive sentiment toward palliative care, only 9% of the cohort had palliative care consultation as part of their cancer treatment plan. Most patients with muscle-invasive or metastatic bladder cancer wished that palliative care had been discussed by their providers. CONCLUSIONS: A subset of bladder cancer patients possess accurate knowledge and positive beliefs of palliative care. Palliative care is infrequently discussed during the treatment of bladder cancer, with patients and their caregivers expressing desire for palliative care to be discussed more often. Provider education surrounding palliative care services is imperative to improving access for bladder cancer patients and caregivers.


Assuntos
Cuidados Paliativos , Neoplasias da Bexiga Urinária , Humanos , Cuidadores , Conhecimentos, Atitudes e Prática em Saúde , Neoplasias da Bexiga Urinária/terapia , Inquéritos e Questionários
8.
Urol Oncol ; 41(6): 293.e15-293.e21, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-36990941

RESUMO

OBJECTIVE: To describe the impact of bladder-preserving treatment vs. cystectomy on work productivity and activity impairment (WPAI) among patients with bladder cancer. METHODS: Using cross-sectional survey data, we constructed 2-part models involving both logistic and linear prediction to describe the relationship between WPAI and treatment modality among patients with non-muscle-invasive bladder cancer (NMIBC) and muscle-invasive bladder cancer (MIBC). RESULTS: A total of 848 patients were included in the analysis. Patients with NMIBC who had cystectomy were more likely to experience activity impairment compared with those receiving bladder-preserving treatment (OR: 4.25, 95% CI: 2.28-7.93). Among patients with MIBC, cystectomy was protective against increasing presenteeism (e^ß: 0.41, 95% CI: 0.23-0.71) and productivity loss (e^ß: 0.44, 95% CI: 0.21-0.88); however, the opposite effect was seen for absenteeism treatment (e^ß: 4.82, 95% CI: 1.72-13.49). CONCLUSION: Cystectomy increased the odds of experiencing activity impairment for patients with NMIBC. However, for patients with MIBC, cystectomy appears to be protective for presenteeism and productivity loss. Further work is needed in order to better understand these important relationships and improve both patient counseling and shared decision-making.


Assuntos
Neoplasias da Bexiga Urinária , Humanos , Estudos Transversais , Neoplasias da Bexiga Urinária/cirurgia , Cistectomia , Invasividade Neoplásica
9.
Urol Oncol ; 41(11): 457.e9-457.e16, 2023 11.
Artigo em Inglês | MEDLINE | ID: mdl-37805339

RESUMO

BACKGROUND: Smoking is the most common risk factor for bladder cancer and is associated with adverse clinical and cancer-related outcomes. Increasing understanding of the patient and provider perspectives on smoking cessation may provide insight into improving smoking cessation rates among bladder cancer survivors. We sought to inform strategies for providers promoting cessation efforts and help patients quit smoking. METHODS: Using a modified Delphi process with multidisciplinary input from bladder cancer providers, researchers, and a patient advocate, 2 surveys were created for bladder cancer patients and providers. Surveys included multiple-choice questions and free answers. The survey was administered electronically and queried participants' perspectives on barriers and facilitators associated with smoking cessation. Survey responses were anonymous, and participants were provided with a $20 Amazon gift card for participating. Patients were approached through the previously established Bladder Cancer Advocacy Network (BCAN) Patient Survey Network, an online bladder cancer patient and caregiver community. Providers were recruited from the Society of Urologic Oncology (SUO) and the Large Urology Group Practice Association (LUGPA). RESULTS: From May to June 2021, 308 patients and 103 providers completed their respective surveys. Among patients who quit smoking, most (64%) preferred no pharmacologic intervention ("cold turkey") followed by nicotine replacement therapy (28%). Repeated efforts at cessation commonly occurred, and 67% reported making more than one attempt at quitting prior to eventual smoking cessation. Approximately 1 in 10 patients were unaware of the association between bladder cancer and smoking. Among providers, 75% felt that barriers to provide cessation include a lack of clinical time, adequate training, and reimbursement concerns. However, 79% of providers endorsed a willingness to receive continuing education on smoking cessation. CONCLUSIONS: Bladder cancer patients utilize a variety of cessation strategies with "cold turkey" being the most used method, and many patients make multiple attempts at smoking cessation. Providers confront multiple barriers to conducting smoking cessation, including inadequate time and training in cessation methods; however, most would be willing to receive additional education. These results inform future interventions tailored to bladder cancer clinicians to better support provider efforts to provide smoking cessation counseling.


Assuntos
Abandono do Hábito de Fumar , Neoplasias da Bexiga Urinária , Humanos , Abandono do Hábito de Fumar/métodos , Bexiga Urinária , Dispositivos para o Abandono do Uso de Tabaco , Fumar/efeitos adversos , Neoplasias da Bexiga Urinária/etiologia , Neoplasias da Bexiga Urinária/terapia
10.
Bladder Cancer ; 8(1): 55-70, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-38994519

RESUMO

BACKGROUND: Bladder cancer treatments may variably impact health-related quality of life (QOL). OBJECTIVE: To characterize the quality of life of patients with bladder cancer at various time points across the continuum of bladder cancer care from non-muscle-invasive disease to metastatic bladder cancer and develop utility scores to inform cost-effective analyses. METHODS: We performed a cross-sectional survey of bladder cancer patients in the Bladder Cancer Advocacy Network Patient Survey Network. Participants were classified into mutually exclusive health states based upon non-muscle invasive (NMIBC), muscle-invasive (MIBC), or metastatic bladder cancer and completed surveys of generic cancer and bladder cancer-specific quality of life, financial toxicity, and work impairment. We constructed generalized linear mixed models to identify patient, clinical, and treatment factors associated with quality of life over time and derived health state utilities. RESULTS: Among 911 self-identified patients with bladder cancer, overall QOL scores and function domains were worse among those with advanced cancer. Financial toxicity was similar among non-metastatic disease states. Work and activity impairment increased with advancing disease (13%and 12%among non-recurrent NMIBC to 63%and 31%for metastatic disease respectively; p < 0.01). On multivariable analysis, bowel-related QOL was diminished among patients with MIBC, with urinary symptoms and physical function most diminished among patients with metastatic disease. Patients with metastatic and MIBC experienced worse emotional functioning (p = 0.04; p = 0.048). Health state utilities were calculated, highest among those with non-recurrent NMIBC and lowest among those with metastatic disease. CONCLUSION: Generic and bladder cancer-specific QOL diminishes with advancing disease. Health state utility estimates derived from this study can inform shared decision making with patients and may be used to inform future cost-effective analyses.

11.
Urol Oncol ; 40(1): 9.e19-9.e27, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34162499

RESUMO

OBJECTIVE: To evaluate the degree of discomfort among patients with bladder cancer undergoing office-based cystoscopy and identify factors and interventions that influence discomfort and anxiety. METHODS: We conducted a survey of the Bladder Cancer Advocacy Network Patient Survey Network (BCAN PSN) to investigate the degree of discomfort associated with office-based cystoscopy and prevalence of interventions used to reduce discomfort. All patients had undergone at least one previous cystoscopy. Bivariable and multivariable logistic regression were used to identify factors associated with moderate-to-severe cystoscopy discomfort. RESULTS: Among 488 BCAN PSN respondents (50% response rate), 392 responded with demographic data and discomfort score. Cystoscopy was associated with moderate-to-severe discomfort in 52% of patients. Respondents who reported moderate-to-severe discomfort were more likely to describe their most recent cystoscopy discomfort as worse than prior (P<0.001) and to be interested in planning discomfort mitigation for cystoscopy (P<0.001). On multivariable analysis, gender was the only factor independently associated with discomfort, with women reporting less discomfort than men (OR 0.59, 95%CI 0.37-0.95,P=0.03). Patients reported a wide variety of cystoscopy-specific interventions with differing perceived effectiveness, the most common being intraurethral lidocaine. CONCLUSIONS: Over half of patients undergoing office-based cystoscopy for bladder cancer report moderate-to-severe discomfort, constituting a substantial problem among patients undergoing the procedure. Future large pragmatic comparative effectiveness trials are needed to better understand which interventions work most effectively to reduce discomfort associated with cystoscopy.


Assuntos
Ansiedade/etiologia , Cistoscopia , Neoplasias da Bexiga Urinária/patologia , Idoso , Ansiedade/epidemiologia , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Visita a Consultório Médico , Autorrelato
12.
Nat Rev Urol ; 19(1): 37-46, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34508246

RESUMO

The success of the use of novel therapies in the treatment of advanced urothelial carcinoma has contributed to growing interest in evaluating these therapies at earlier stages of the disease. However, trials evaluating these therapies in the neoadjuvant setting must have clearly defined study elements and appropriately selected end points to ensure the applicability of the trial and enable interpretation of the study results. To advance the development of rational trial design, a public workshop jointly sponsored by the US Food and Drug Administration and the Bladder Cancer Advocacy Network convened in August 2019. Clinicians, clinical trialists, radiologists, biostatisticians, patients, advocates and other stakeholders discussed key elements and end points when designing trials of neoadjuvant therapy for muscle-invasive bladder cancer (MIBC), identifying opportunities to refine eligibility, design and end points for neoadjuvant trials in MIBC. Although pathological complete response (pCR) is already being used as a co-primary end point, both individual-level and trial-level surrogacy for time-to-event end points, such as event-free survival or overall survival, remain incompletely characterized in MIBC. Additionally, use of pCR is limited by heterogeneity in pathological evaluation and the fact that the magnitude of pCR improvement that might translate into a meaningful clinical benefit remains unclear. Given existing knowledge gaps, capture of highly granular patient-related, tumour-related and treatment-related characteristics in the current generation of neoadjuvant MIBC trials will be critical to informing the design of future trials.


Assuntos
Carcinoma de Células de Transição/terapia , Ensaios Clínicos como Assunto/métodos , Terapia Neoadjuvante , Neoplasias da Bexiga Urinária/terapia , Carcinoma de Células de Transição/patologia , Humanos , Estados Unidos , United States Food and Drug Administration , Neoplasias da Bexiga Urinária/patologia
13.
Urol Oncol ; 39(3): 193.e13-193.e19, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-32863122

RESUMO

BACKGROUND: The Bladder Cancer Advocacy Network's (BCAN) Patient Survey Network established a diverse bladder cancer patient community who contribute to the prioritization of bladder cancer research topics through surveys and summits. This study describes our experience establishing an online learning program to train this population in research methods specific to bladder cancer and to subsequently engage patients in various stages of bladder cancer research. METHODS: We created online learning modules that addressed scientific concepts related to bladder cancer, creating the patient empowerment through engagement in research (PEER) program. Bladder cancer patients and caregivers who completed the program were invited to participate in the annual BCAN Bladder Cancer Summit to develop research study concepts. We then facilitated the promoting implementation of patient engagement in research conference to identify methods of connecting patient research advocates with research teams and find ways to disseminate patient-centered outcomes research. RESULTS: After completing the online training, 2 cohorts of PEER trainees attended the 2017 (n = 19) and 2018 (n = 18) Bladder Cancer Summits. These research advocates contributed to the prioritization of bladder cancer research topics that appeared on the Patient Survey Network and developed 3 patient-centered research studies. BCAN research advocates participated in promoting implementation of patient engagement the following year (n = 57) and identified these priorities: (1) the need to expand the patient research advocate cohort, (2) the need to streamline links between patient research advocates and research teams, and (3) approaches for patient-centered dissemination of research results. CONCLUSIONS: The PEER program provides an exemplar for disease-specific research training for fostering patient engagement in research. This framework can be extrapolated to facilitate patient engagement in the research of other disease processes and malignancies.


Assuntos
Pesquisa Biomédica , Educação de Pacientes como Assunto , Participação do Paciente , Projetos de Pesquisa , Neoplasias da Bexiga Urinária , Estudos de Coortes , Humanos , Autorrelato
14.
Bladder Cancer ; 7(1): 43-52, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-38993209

RESUMO

BACKGROUND: The unique burden of treatment and survivorship of patients with bladder cancer can negatively impact caregiver experience and their use of supportive care resources. OBJECTIVE: To assess caregivers' well-being and their perception of potential supportive resources. METHODS: In this cross-sectional survey, caregivers of patients with bladder cancer (N = 630) were recruited through the nationwide Bladder Cancer Advocacy Network Patient Survey Network. We used stakeholder-developed questionnaires to examine caregiver well-being (i.e., physical well-being, tiredness, fear, worry, sadness), the perceived helpfulness of potential resources (i.e., web-based and print-based information, specialized support, personal stories of other caregivers, phone-call and online chat with other caregivers), and influencing factors. RESULTS: Caregivers more frequently reported emotional well-being as a moderate to serious problem (67% for fear, 78% for worry, 66% for sadness) compared with physical well-being (30%) and tiredness (47%). Decreased well-being was associated with female gender of the caregiver, higher than high school education, or caring for a patient with advanced (versus non-invasive) bladder cancer. Of six potential resources, "web-based information" was perceived as "very helpful" among 79% of respondents, followed by "personal stories from other caregivers" (62%). Caregiver preferences for "web-based information" was not associated with any specific demographic or clinical factors. CONCLUSIONS: Caregivers reported moderate to serious problems with emotional and physical well-being. Web-based platforms were perceived as beneficial supportive resources for bladder cancer caregivers. Future intervention research should target the influencing factors identified in this study to optimize the health outcomes of caregivers and enhance the supportive care resources for improving their well-being.

15.
Cancer Med ; 8(2): 543-553, 2019 02.
Artigo em Inglês | MEDLINE | ID: mdl-30632713

RESUMO

BACKGROUND: Fatigue is distressing and affects quality of life (QoL) among patients with myelodysplastic syndrome (MDS), aplastic anemia (AA), and paroxysmal nocturnal hemoglobinuria (PNH). Limited data exist on the impact of fatigue, QoL, and related symptoms in these patients. OBJECTIVE: Prospectively assess fatigue (functional assessment of cancer therapy-anemia [FACT-An]); QoL (FACT-An subscales); pain (brief pain inventory); and depression, anxiety, and stress (depression anxiety stress scale-21) and strategies used to manage these symptoms in patients with MDS, AA, and PNH. METHODS: Surveys were administered via the AA and MDS International Foundation website and database from October 2014 through April 2015 in a cross-sectional study. Results were summarized using descriptive statistics. RESULTS: Of 303 patients, 145 (48%) had MDS, 84 (28%) had AA, and 74 (24%) had PNH; 31 (10%) had >1 diagnosis. The mean age was 57 years, 200 (66%) were female, and 195 (92%) were white. The mean fatigue scores were 25 (range 1-52) for the whole cohort, 28 for AA, 25 for MDS, and 24 for PNH (P = 0.117); these are all considered severe level. The mean QoL score was 68 (range 10-104) for the whole cohort, 67 for AA, 69 for MDS, and 67 for PNH (P = 0.821). The ranges for stress were normal; pain and depression, mild; and anxiety, moderate. The most common management strategies perceived as helpful for fatigue in the past month were preserving energy, physical activity, and naps. CONCLUSIONS: Many patients with MDS, AA, and PNH report severe fatigue. The helpfulness of fatigue management strategies may impact patients' continued use; whether these strategies are beneficial and decrease fatigue levels needs more study.


Assuntos
Anemia Aplástica/complicações , Fadiga/etiologia , Hemoglobinúria Paroxística/complicações , Síndromes Mielodisplásicas/complicações , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Anemia Aplástica/reabilitação , Ansiedade/etiologia , Depressão/etiologia , Exercício Físico , Fadiga/reabilitação , Feminino , Hemoglobinúria Paroxística/reabilitação , Humanos , Masculino , Pessoa de Meia-Idade , Síndromes Mielodisplásicas/reabilitação , Dor/etiologia , Qualidade de Vida , Sono , Adulto Jovem
17.
Bladder Cancer ; 2(2): 203-213, 2016 Apr 27.
Artigo em Inglês | MEDLINE | ID: mdl-27376139

RESUMO

The 10th Annual Bladder Cancer Think Tank was hosted by the Bladder Cancer Advocacy Network and brought together a multidisciplinary group of clinicians, researchers, representatives and Industry to advance bladder cancer research efforts. Think Tank expert panels, group discussions, and networking opportunities helped generate ideas and strengthen collaborations between researchers and physicians across disciplines and between institutions. Interactive panel discussions addressed a variety of timely issues: 1) data sharing, privacy and social media; 2) improving patient navigation through therapy; 3) promising developments in immunotherapy; 4) and moving bladder cancer research from bench to bedside. Lastly, early career researchers presented their bladder cancer studies and had opportunities to network with leading experts.

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