From Diagnosis to Survivorship: Bladder Cancer Survivors Unmet Needs

从诊断到生存：膀胱癌幸存者的需求未得到满足

• 批准号: 8507648
• 负责人: Nihal Mohamed
• 金额: $ 7.97万
• 依托单位: ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI
• 依托单位国家: 美国
• 财政年份: 2012
• 资助国家: 美国
• 起止时间: 2012-07-09 至 2014-12-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8507648
• 关键词: Activities of Daily Living; Advertisements; Advocacy; Aftercare; Age; Bladder; Blast Cell; Body Image; Cancer Advocacy; Cancer Patient; Cancer Survivor; Caregivers; Caring; Characteristics; Clinical; Continent Reservoir; Counseling; Data Analyses; Decision Making; Development; Diagnosis; Disease; Early treatment; Electronic Mail; Emotional; Evaluation; Excision; Face; Family; Family health status; Focus Groups; Foundations; Future; Gender; Goals; Health Communication; Health Information System; Health Personnel; Health Professional; Healthcare; Home environment; Ileal conduit procedure; Individual; Informal Social Control; Intervention; Life; Literature; Long Term Survivorship; Malignant Neoplasms; Malignant neoplasm of urinary bladder; Measures; Medical; Mental Health; Methods; Modeling; Muscle; National Cancer Institute; Needs Assessment; Newly Diagnosed; Nurses; Online Systems; Operative Surgical Procedures; Ostomy; Outcome Study; Participant; Patient Care; Patient Education; Patients; Personal Communication; Phase; Physicians; Prevalence; Procedures; Psychologist; Psychosocial Assessment and Care; Qualitative Research; Quality of life; Questionnaires; Recruitment Activity; Recurrence; Research; Research Personnel; Resources; Self Management; Services; Social Impacts; Support Groups; Surveys; Survival Rate; Survivors; Techniques; Testing; Theoretical model; Time; Urinary Diversion; Urine; Urologist; Urology; Woman; cancer diagnosis; cancer prevention; cancer therapy; care delivery; design; emotional adjustment; experience; follow-up; gastrointestinal function; improved; innovation; medical schools; member; men; patient advocacy group; psychologic; psychosocial; social; survivorship; theories; urinary

DESCRIPTION (provided by applicant): The National Cancer Institute (NCI) estimates that in 2011, 69,250 new cases of Bladder Cancer (BC) will be diagnosed and 14,990 patients will die of this disease in the US. Surgery to remove the bladder is the standard therapy when bladder cancer is muscle-invasive (MIBC), which is the case for approximately 30% of newly diagnosed patients. Removal of the bladder necessitates the diversion of urine following three reconstructive techniques; ileal conduit, continent reservoir, and neobladder. Although all types of urinary diversions offer similar recurrence-free survival rates (87% -76% in 5-10-year), the three procedures can have severe effects on patients' urinary, sexual, and gastrointestinal functioning, body-image, and post-treatment quality of life. In spite of recent developments in health communication and QOL research among cancer patients, no study has examined informational, psychological, and health care needs of MIBC patients. This represents an important deficit in the literature given the magnitude and the devastating impact of MIBC treatment on patients QOL. The main objective of this study is to increase the understanding of MIBC patients' unmet needs throughout the illness experience. Identifying these unmet needs is vital in providing necessary support to reduce patients' burden and ultimately to guide the design and evaluation of future psychosocial interventions. Study aims are: Aim 1, to explore and identify MIBC patients' unmet needs during the time of diagnosis, treatment, and survivorship through focus groups (N = 40); and AIM 2, to conduct a web-based survey among patients (N = 150) to assess their unmet needs in different domains across the illness trajectory. Patients will be recruited through the Bladder Cancer Advocacy Network (BCAN). Analyses will explore demographic and clinical predictors of identified unmet needs and associations among unmet needs, QOL, and emotional adjustment. Expected outcomes of this study are: a) a comprehensive description of MIBC patients' unmet needs, and their associations with QOL b) improved understanding of clinical and demographic predictors of unmet needs, and d) an experienced investigator with a well-developed foundation of research in cancer prevention/control. The proposed study is significant and innovative as: a) it is aligned with NCI priorities which emphasize improving care and QOL of life for cancer patients, survivors, and their families; b) it is the first study to systematically assess and quantify unmet needs of MIBC patients across all important domains; c) it explores demographic and clinical predictors of unmet needs which will help the design of future interventions by tailoring information and targeting specific groups of patients; d) need assessments will be informed through the input of patients, survivors, physicians, nurses and an advocacy group (BCAN); e) it is a multi-disciplinary collaborative effort bringing together experts in BC patients' experiences of treatment, decision-making, qualitative research, and quantitative data analysis.

描述（由申请人提供）：美国国家癌症研究所 (NCI) 估计，2011 年，美国将诊断出 69,250 例新的膀胱癌 (BC) 病例，并将有 14,990 名患者死于该疾病。当膀胱癌呈肌层浸润性 (MIBC) 时，手术切除膀胱是标准疗法，大约 30% 的新诊断患者属于这种情况。膀胱切除需要通过三种重建技术进行尿液改道；回肠导管、大陆库和新膀胱。尽管所有类型的尿流改道术的无复发生存率相似（5-10 年为 87% -76%），但这三种手术可能对患者的泌尿、性和胃肠功能、身体形象和健康产生严重影响。治疗后的生活质量。尽管癌症患者的健康沟通和生活质量研究最近取得了进展，但还没有研究调查 MIBC 患者的信息、心理和医疗保健需求。考虑到 MIBC 治疗对患者生活质量的严重性和破坏性影响，这代表了文献中的一个重要缺陷。本研究的主要目的是加深对 MIBC 患者在整个疾病过程中未满足的需求的了解。确定这些未满足的需求对于提供必要的支持以减轻患者的负担并最终指导未来社会心理干预措施的设计和评估至关重要。研究目的是： 目标1，通过焦点小组（N = 40）探索和识别MIBC患者在诊断、治疗和生存期间未满足的需求； AIM 2，对患者（N = 150）进行基于网络的调查，以评估他们在整个疾病轨迹中不同领域未得到满足的需求。将通过膀胱癌倡导网络 (BCAN) 招募患者。分析将探讨已确定的未满足需求的人口统计和临床预测因素以及未满足需求、生活质量和情绪调整之间的关联。本研究的预期结果是：a) 全面描述 MIBC 患者未满足的需求及其与生活质量的关系 b) 提高​​对未满足需求的临床和人口预测因素的理解，以及 d) 一位经验丰富的研究者，具有良好的基础癌症预防/控制研究。拟议的研究具有重要意义和创新性，因为：a）它与 NCI 的优先事项一致，强调改善癌症患者、幸存者及其家人的护理和生活质量； b) 这是第一项系统评估和量化 MIBC 患者在所有重要领域未满足需求的研究； c) 它探索未满足需求的人口和临床预测因素，这将有助于通过定制信息和针对特定患者群体来设计未来的干预措施； d) 将通过患者、幸存者、医生、护士和倡导小组 (BCAN) 的意见来进行需求评估； e) 这是一项多学科合作的成果，汇集了 BC 患者治疗、决策、定性研究和定量数据分析经验方面的专家。

项目成果

Unmet informational and supportive care needs of patients following cystectomy for bladder cancer based on age, sex, and treatment choices.

根据年龄、性别和治疗选择，膀胱癌膀胱切除术后患者未满足的信息和支持性护理需求。

• DOI: 10.1016/j.urolonc.2016.06.010
• 发表时间: 2016-12-01
• 期刊: Urologic oncology
• 作者: N. Mohamed;S. Pisipati;Cheryl T. Lee;H. Goltz;D. Latini;F. Gilbert;D. Wittmann;C. Knauer;R. Mehrazin;J. Sfakianos;G. McWilliams;D. Quale;S. Hall
• 通讯作者: S. Hall

Involving Patients in the Development and Evaluation of an Educational and Training Experiential Intervention (ETEI) to Improve Muscle Invasive Bladder Cancer Treatment Decision-making and Post-operative Self-care: a Mixed Methods Approach.

让患者参与教育和培训体验干预 (ETEI) 的制定和评估，以改善肌肉侵袭性膀胱癌的治疗决策和术后自我护理：混合方法。

• 发表时间: 2020
• 作者: Mohamed, Nihal;Leung, Tung Ming;Shah, Qainat N;Pisipati, Sailaja;Berry, Donna L;Benn, Emma K T;Lee, Cheryl T;Hall, Simon;Mehrazin, Reza;Sfakianos, John
• 通讯作者: Sfakianos, John

Depression and anxiety among patients treated for bladder cancer: examining clinical, demographic, and psychosocial predictors.

膀胱癌治疗患者的抑郁和焦虑：检查临床、人口统计学和心理社会预测因素。

• 发表时间: 2023
• 作者: Mohamed, Nihal E;Leung, Tung;Benn, Emma Kt;Korn, Talia G;Ali, Imran;Patel, Dhruti;Gonzalez, Adam;Quale, Diane Z
• 通讯作者: Quale, Diane Z