Patient-centered development of a bladder cancer survivorship care plan.

PURPOSE: This study aimed to develop a patient-centered survivorship care plan (SCP) for US military Veteran bladder cancer (BC) survivors in accordance with the National Academy of Medicine recommendation that survivors receive an SCP at treatment completion. BC, which differentially impacts older men, is a costly and highly recurrent cancer associated with invasive procedures and long-term surveillance. Veteran BC survivors may face challenges navigating the patient-to-survivor transition due to their age and comorbidities. METHODS: We conducted 20 one-on-one qualitative interviews and 2 focus groups with Veteran BC survivors to understand their preferences for information and support to inform SCP development. Data were analyzed using rapid analysis. RESULTS: Participants voiced concerns about BC's impact on their psychosocial functioning and quality of life. They suggested information on BC recurrences, recommended surveillance schedules, long-term side effects and healthy living, and how and when to seek help if a medical problem arises should be included on the SCP to help manage expectations and access key resources during survivorship. Although participants had varying needs, many recommended including information on supportive resources (e.g., support groups, peer support programs) to manage cancer-related anxiety. Participants also suggested including Veteran-centered information (e.g., Veterans' BC risk factors). CONCLUSION: We developed an SCP to help Veteran BC survivors navigate the transition from patient to survivor. Adapting an SCP to address specific needs of the Veteran population was an important step in supporting Veteran BC survivors. Future research should evaluate the potential effectiveness of this SCP at improving Veterans' health outcomes and healthcare experiences.

Associations of practical, emotional, and physical problems with psychosocial distress among cancer patients.

OBJECTIVE: To better understand the relationship between cancer patient distress and psychosocial variables, including problem types, to improve ability to predict and address psychosocial need. METHODS: A variation of National Comprehensive Cancer Network (NCCN) Distress Thermometer (DT) was administered and collected at four sites from an Integrated Network Cancer Program (INCP). The presence of moderate/severe distress was examined relative to patient demographics, disease characteristics, and psychosocial problems. RESULTS: Distress scores were positively correlated with all problem counts. For every count increase of practical, emotional, and physical problems, and for every cancer stage increase the odds of reporting a moderate/severe distress score was significantly higher. Relative to patients with one cancer treatment type, patients with three cancer treatment types were significantly less likely to report moderate/severe distress. CONCLUSION: Problem count could be a useful indicator for clinical intervention. Stage and number of treatment types may also be considered clinically relevant distress predictors.

Implications for Psychosocial ResearchThis study found that NCCN Distress Thermometer distress levels and problem counts are highly correlated in most cancer patients.In addition to distress level, problem count on NCCN Distress Thermometer should be considered a potential trigger for psychosocial intervention.NCCN Distress Thermometer problem count may be a more durable indicator of need for psychosocial intervention then distress level alone. Psychosocial problems are rarely transient, while distress level can fluctuate day-to-day.Future research should examine the role of psychosocial problems on continuous distress scores and the relative contribution of each set of problem types on distress.

Collaboration Between Oncology Social Workers and Nurses: A Patient-Centered Interdisciplinary Model of Bladder Cancer Care.

OBJECTIVES: We propose a bladder cancer patient-centered, interdisciplinary collaboration model of care adapted from an earlier model by Black, Dornan, and Allegrante (1986). The Bladder Patient-Centered Interdisciplinary Team (BPIT) model provides a conceptual foundation for assembling interdisciplinary teams and emphasizes the patient as an active participant in treatment and member of the care team, along with oncology nurses, wound ostomy and continence nurses, and oncology social workers. DATA SOURCES: This model integrates scopes of practice and practice standards from nursing and social work professional organizations, findings from peer-reviewed articles, and expert clinical opinion in conceptualizing interdisciplinary bladder cancer care. CONCLUSION: BPIT is not meant to be an exhaustive or proscriptive catalog of roles and responsibilities. Future research is needed in this area to further refine and delineate the oncology social worker and nursing scopes of practice and standards for collaborative teamwork. IMPLICATIONS FOR NURSING PRACTICE: The unmet supportive care needs of patients with bladder cancer across all phases of the cancer continuum are well documented. Oncology and wound ostomy and continence nurses are of critical importance to holistically addressing these needs and enhancing the health-related quality of life. The BPIT model provides a broad overview of the discipline-specific and interdisciplinary team-specific roles and responsibilities for bladder cancer care.

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

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. TRIAL REGISTRATION: Study HUM00056082.

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

PURPOSE: Assessing the unmet needs of cancer patients can help providers tailor health care services to patients' specific needs. This study examines whether the unmet informational and supportive care needs of the patients with muscle-invasive bladder cancer vary by the patients' age, sex, or individual treatment choices. METHODS AND MATERIALS: Participants (N = 30 survivors; 73.3% men) were recruited from the Mount Sinai Medical Center and through advertisements posted on a national Bladder Cancer Advocacy Network website between December 2011 and September 2012. Data were collected through individual interviews and electronic medical record review. A prior qualitative study of this cohort, using immersion/crystallization approach, confirmed the prevalence of unmet needs across the disease trajectory. This is a secondary quantitative analysis of the initial interview data we collected (i.e., quantitative analyses of transformed qualitative data using Chi-square and Fisher exact tests) to examine differences in unmet needs based on the patient's age, sex, and treatment choices. RESULTS: Younger patients (<60y) were less satisfied with the treatment information received presurgery and more likely to report posttreatment complications, choose a neobladder, and seek and receive professional support regarding sexual function, than were older patients (P<0.05). More women than men reported difficulties with self-care and relied on themselves in disease self-management as opposed to relying on spousal support (P<0.05). Patients with neobladder were more likely to report difficulties with urinary incontinence and deterioration in sexual function, whereas patients with ileal conduit were more likely to require spousal help with self-care. Patients who received chemotherapy were significantly more likely to report changes in everyday life (P<0.05). Lastly, regardless of age, sex, or treatment choice, up to 50% of patients reported feeling depressed before or after treatment. CONCLUSIONS: Unmet informational and supportive needs of patients with muscle-invasive bladder cancer during survivorship, and vary by age, sex, and treatment choices. Educational and psychological assessments as well as clinical interventions should be tailored to a patient's specific unmet needs, and to specific clinical and demographic characteristics.

Changes in sexual roles and quality of life for gay men after prostate cancer: challenges for sexual health providers.

INTRODUCTION: Gay men with prostate cancer (GMPCa) may have differential health-related quality of life (HRQOL) and sexual health outcomes than heterosexual men with prostate cancer (PCa), but existing information is based on clinical experience and small studies. AIMS: Our goals were to: (i) describe HRQOL and examine changes in sexual functioning and bother; (ii) explore the psychosocial aspects of sexual health after PCa; and (iii) examine whether there were significant differences on HRQOL and sexual behavior between GMPCa and published norms. METHODS: A convenience sample of GMPCa completed validated disease-specific and general measures of HRQOL, ejaculatory function and bother, fear of cancer recurrence, and satisfaction with prostate cancer care. Measures of self-efficacy for PCa management, illness intrusiveness, and disclosure of sexual orientation were also completed. Where possible, scores were compared against published norms. MAIN OUTCOME MEASURES: Main outcome measures were self-reported sexual functioning and bother on the Expanded Prostate Cancer Index. RESULTS: Compared with norms, GMPCa reported significantly worse functioning and more severe bother scores on urinary, bowel, hormonal symptom scales (Ps < 0.015-0.0001), worse mental health functioning (P < 0.0001), greater fear of cancer recurrence (P < 0.0001), and were more dissatisfied with their PCa medical care. However, GMPCa reported better sexual functioning scores (P < 0.002) compared with norms. Many of the observed differences met criteria for clinical significance. Physical functioning HRQOL and sexual bother scores were similar to that of published samples. GMPCa tended to be more "out" about their sexual orientation than other samples of gay men. CONCLUSIONS: GMPCa reported substantial changes in sexual functioning after PCa treatment. They also reported significantly worse disease-specific and general HRQOL, fear of recurrence, and were less satisfied with their medical care than other published PCa samples. Sexual health providers must have an awareness of the unique functional and HRQOL differences between gay and heterosexual men with PCa.