Muscle invasive bladder cancer: examining survivor burden and unmet needs.

Although improvements in perioperative care have decreased surgical morbidity after radical cystectomy for muscle invasive bladder cancer, treatment side effects still have a negative impact on patient quality of life. We examined unmet patient needs along the illness trajectory. A total of 30 patients (26.7% women) treated with cystectomy and urinary diversion for muscle invasive bladder cancer participated in the study. Patients were recruited from the Department of Urology at Mount Sinai and through advertisements on the Bladder Cancer Advocacy Network (BCAN) website between December 2011 and September 2012. Data were collected at individual interviews, which were audiotaped and transcribed. Transcribed data were quantitatively analyzed to explore key unmet needs. At diagnosis unmet informational needs were predominant, consisting of insufficient discussion of certain topics, including urinary diversion options and their side effects, self-care, the recovery process and medical insurance. Unmet psychological needs related to depression, and worries about changes in body image and sexual function were reported. Postoperative unmet needs revolved around medical needs (eg pain and bowel dysfunction) and instrumental needs (eg need of support for stomal appliances, catheters and incontinence). During survivorship (ie 6 to 72 months postoperatively) unmet needs centered around psychological support (ie depression, poor body image and sexual dysfunction) and instrumental support (eg difficulty adjusting to changes in daily living). Meeting patient needs is imperative to ensure adequate patient involvement in health care and enhance postoperative quality of life. An effective support provision plan should follow changes in patient needs.

Mohamed NE ，Chaoprang Herrera P ，Hudson S ，Revenson TA ，Lee CT ，Quale DZ ，Zarcadoolas C ，Hall SJ ，Diefenbach MA ... -  《-》

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

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. 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. 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. 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.

Mohamed NE ，Pisipati S ，Lee CT ，Goltz HH ，Latini DM ，Gilbert FS ，Wittmann D ，Knauer CJ ，Mehrazin R ，Sfakianos JP ，McWilliams GW ，Quale DZ ，Hall SJ ... -  《-》

Assessment of quality of life, information, and supportive care needs in patients with muscle and non-muscle invasive bladder cancer across the illness trajectory.

Chung J ，Kulkarni GS ，Morash R ，Matthew A ，Papadakos J ，Breau RH ，Guttman D ，Bender J ，Jones JM ... -  《-》

Dealing With the Unthinkable: Bladder and Colorectal Cancer Patients' and Informal Caregivers' Unmet Needs and Challenges in Life After Ostomies.

We examined patient and informal caregiver unmet needs to identify areas for targeted supportive care interventions and programs to enhance both patient and informal caregiver experience. A total of 30 patients who underwent ostomy surgeries for bladder or colorectal cancers and 13 informal caregivers participated in the study. Patients were enrolled at the Icahn School of Medicine at Mount Sinai between 2017 and 2018. Qualitative data were collected by individual interviews, audiotaped, and transcribed verbatim. Transcribed data were iteratively analyzed using Atlas.ti to explore patient and caregiver unmet needs. Patients and informal caregivers reported having insufficient psychological preparation for ostomy surgeries, and very limited hands-on training on stoma care and utility of stomal appliances. Unmet psychological needs related to depression, anxiety, and distress caused by changes in body image and sexual, urinary, and bowel function were reported. Patients and caregivers also reported significant patient medical needs in the acute postoperative period including pain, fatigue, sleep disturbance, inflammation, and complications resulting in hospital readmissions. Colorectal cancer patients specifically experienced significant challenges with changes in diet and nutrition that contributed to ostomy care burden. Both patients and caregivers recommended seeking psychological and social support to enhance both patient and caregiver emotional adjustment to life after ostomies. Meeting patient and informal caregiver unmet informational and supportive care needs is imperative to improve their quality of life and adjustment. An effective supportive care plan should be designed and utilized in clinical care to improve ostomy patients' and caregivers' outcomes.

Mohamed NE ，Shah QN ，Kata HE ，Sfakianos J ，Given B ... -  《-》

Unmet informational and supportive care needs of patients with muscle invasive bladder cancer: A systematic review of the evidence.

Little is known about the unmet supportive care needs of patients affected by muscle invasive bladder cancer (MIBC). We set out to determine the different domains of unmet supportive care needs for patients affected by MIBC. A systematic review was conducted according to the PRISMA Statement Guidelines. A sensitive search was performed in electronic databases (DARE, Cochrane, MEDLINE, BNI, PsychINFO, EMBASE and CIHAHL) from the earliest date available to January 2017. 1405 references were retrieved, 8 articles met the eligibility criteria and were appraised and ranked by strength using the levels of evidence. Individual unmet needs were classified into the following domains: patient-clinician communication, daily living needs, health system/information needs, practical needs, family-related needs, social needs, psychological needs, physical needs and intimacy needs. Patients reported high unmet needs at diagnosis and into survivorship. This review contributes to a greater understanding of the unmet supportive care needs of patients affected by MIBC. Findings reflect a paucity of research, but existing studies indicated needs commonly related to intimacy, informational, physical and psychological needs. Despite the emerging evidence-base, the current within study limitations precludes our understanding about how the needs of patients evolve over time.

Paterson C ，Jensen BT ，Jensen JB ，Nabi G ... -  《-》