Patient Resources Available to Bladder Cancer Patients: A Pilot Study of Healthcare Providers

Lee, Cheryl T.; Mei, Minghua; Ashley, J; Breslow, Gene; O’Donnell, Michael A.; Gilbert, Scott M.; Lemmy, Simon; Saxton, Claire; Sagalowsky, Arthur I.; Sansgiry, Shubhada; Latini, David

doi:10.1016/j.urology.2011.07.1405

Cited by 17 publications

(11 citation statements)

References 20 publications

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“…Our results also suggest that there is also a need to develop and refine targeted interventions for urinary and bowel symptoms, and abdominal pain. These are symptoms for which fewer intervention approaches have been tested in cancer survivors, and the results of a recent survey further emphasize the need to develop and disseminate resources for bladder cancer survivors [27]. Our observation that some symptom distress is procedurally related also appears to be a novel finding that warrants focused study.…”

Section: Discussionmentioning

confidence: 84%

The importance of symptom surveillance during follow-up care of leukemia, bladder, and colorectal cancer survivors

Kent

Mitchell

Oakley-Girvan

et al. 2013

Support Care Cancer

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Purpose We examined cancer survivors’ experience of bothersome symptoms, association of symptom bother with health-related quality of life (HRQOL), survivors’ perception of symptom care, and their symptom-related information needs. Methods Using self-report survey measures, survivors of leukemia, bladder, or colorectal cancer who were 2–5 years post-diagnosis and received follow-up care in the past year (N = 623) provided information about the presence of bothersome symptoms, symptom-related information needs, adequacy of symptom-related care, and their physical and mental HRQOL. Multivariable statistical analyses were conducted to identify correlates of symptom bother, inadequate care, and symptom information needs and to examine the association between symptom bother and HRQOL. Results Twenty-eight percent of the 606 respondents experienced symptom bother in the past year (46 % of leukemia, 24 % of bladder, and 26 % of colorectal cancer survivors). Younger survivors, those of Hispanic ethnicity, with low income, those with recurrent cancer, and chemotherapy recipients were more likely to report symptom bother (all p <0.05). Symptom bother was associated with lower physical and mental HRQOL (p <0.001). While 92 % of survivors with symptoms discussed them with their follow-up care physician, 52 % of these reported receiving inadequate symptom care. Survivors reporting inadequate symptom care were 2.5 times as likely to identify symptom information needs compared to those who received adequate care (p <0.05). Conclusions One in four cancer survivors report symptoms 2–5 years post-diagnosis, and only half of these survivors receive adequate care to address those symptoms. Research that refines and tests symptom care interventions for this population is warranted.

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Section: Discussionmentioning

confidence: 84%

The importance of symptom surveillance during follow-up care of leukemia, bladder, and colorectal cancer survivors

Kent

Mitchell

Oakley-Girvan

et al. 2013

Support Care Cancer

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“…Guidelines for SCPs recommended by the IOM, NCCN, and CoC informed the content, structure, and design of the BC-SCP [5,7]. Following these guidelines, our BC-SCP (Additional file 1) incorporates sections for general and background information (Sections I and II), prior and planned treatment (Section III), and cancer surveillance (Section IV).…”

Section: Phase I: the Development Of The Bc-scpmentioning

confidence: 99%

“…We and others have shown that significant unmet informational needs and supportive care needs persist throughout the BC trajectory including survivorship [ 2 – 4 ]. Although the need for information about BC, treatment options, short-term side-effects, and self-care skills is readily apparent after cancer diagnosis and treatment, the need for management of long-term side-effects (e.g., urinary incontinence, sexual dysfunction, and psychological adjustment to altered body-image) is often unrecognized [ 2 , 4 , 5 ]. In spite of the importance, variability, and persistence of information and supportive care needs in BC patients, resources to meet these needs are very limited (e.g., support groups, survivorship programming, and patient navigation/information) [ 2 , 4 , 5 ].…”

Section: Introductionmentioning

confidence: 99%

“…Consequently, the American Society of Clinical Oncology (ASCO) recommends a shared care model between oncologists and PCPs for breast cancer survivorship; the level of shared care would be dependent upon the preferences of providers and survivors as well as available resources [ 8 , 9 ]. Challenges to the community-based survivorship model include a lack of specialized experience in managing the complex needs of survivors [ 10 , 11 ], scarcity of time to counsel patients about survivorship issues, complications of cancer treatments, psychosocial support, symptom management, and self-care [ 4 , 5 , 11 , 12 ].…”

Section: Introductionmentioning

confidence: 99%

“…The Institute of Medicine (IOM), the National Comprehensive Cancer Network (NCCN), and American College of Surgeons Commission on Cancer (CoC) efforts to improve survivorship have led to major recommendations for enhancing cancer survivor’s care quality and follow-up care [ 5 , 7 ]. One of these recommendations is the provision of Survivorship Care Plans (SCPs) to patients and their PCPs [ 13 ].…”

Section: Introductionmentioning

confidence: 99%

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Development and evaluation of a bladder Cancer specific survivorship care plan by patients and clinical care providers: a multi-methods approach

Lee

Mohamed

Pisipati

et al. 2020

BMC Health Serv Res

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Background, context and purpose: In spite of the mixed evidence for their impact, survivorship Care Plans (SCPs) are recommended to enhance quality of care for cancer survivors. Data on the feasibility of SCPs in bladder cancer (BC) is sparse. Using a mixed-methods approach, this study describes the iterative development, acceptability and feasibility of BC specific SCP (BC-SCP) in clinical settings. Methods: In Phase I, we developed the BC-SCP. In Phase II, we conducted four focus groups with 19 patients and 15 providers to examine its acceptability and usability challenges. Data analyses using the Atlas.ti program, informed refinement of the BC-SCP. In Phase III, we conducted feasibility testing of the refined BC-SCP with 18 providers from 12 health-centers. An encounter survey was completed after each assessment to examine the feasibility of the BC-SCP. Chi-square and Fisher Exact tests were used for comparative analyses. Results: During phase I, we observed high patient and provider acceptability of the BC-SCP and substantial engagement in improving its content, design, and structure. In Phase II, providers completed 59 BC-SCPs. Mean time for BC-SCP completion was 12.3 min. Providers reported that BC-SCP content was clear, did not hamper clinic flow and was readily completed with easy-to-access information. Comparative analyses to examine differences in SCP completion time by patient clinico-demographic characteristics and provider type revealed no significant differences. Conclusions: Our BC-SCP has clinical relevance, and can be used in an active practice setting. However, considerable progress will be necessary to achieve implementation of and sharing the BC-SCP with patients and care providers, particularly within the electronic medical record. In summary, BC-SCPs are essential to improve the follow up care of BC survivors. Clinical resources are required to ensure appropriate implementation of BC-SCPs.

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Impact of health services on compliance and outcomes

et al. 2015

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Patient Resources Available to Bladder Cancer Patients: A Pilot Study of Healthcare Providers

Cited by 17 publications

References 20 publications

The importance of symptom surveillance during follow-up care of leukemia, bladder, and colorectal cancer survivors

The importance of symptom surveillance during follow-up care of leukemia, bladder, and colorectal cancer survivors

Development and evaluation of a bladder Cancer specific survivorship care plan by patients and clinical care providers: a multi-methods approach

Impact of health services on compliance and outcomes

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