Manan M. Nayak

Treatment Decision Making in Patients with Bladder Cancer

Abstract Background: Each stage of bladder cancer involves varying treatment issues and concerns that are discussed between patients and providers during the pre-treatment consultation. There is no documentation of how patients engage in decision making. Objective: To describe aspects of treatment decision making perceived by patients with bladder cancer using qualitative analysis of data from individual interviews. Methods: Patients with any stage bladder cancer were recruited from urology and medical oncology services at a comprehensive cancer center. A qualitative approach to data collection and analysis was applied. Individual, semi-structured interviews were conducted, recorded and transcribed. Coding of the transcripts was conducted by research team members, discussed for consensus and major themes derived. Results: 45 men and 15 women, the majority college educated, were recruited. Where to receive care, including from whom, was the initial and major decision. Challenges of decisions regarding urinary reconstruction were dominant. Personal characteristics, including age and being active, were considered. Participants with early stage tumors (n = 28) typically perceived only one treatment option and followed the physician’s recommendation. The 18 participants with stage II-III were aware of multiple options. In 14 stage IV participants, balancing quality of life and outcomes between treatments was common to the decision process. Conclusions: For this educated sample with bladder cancer, recruited at a comprehensive cancer center, the major decision was to seek treatment at a location with the highest level of physician expertise. Personal preferences informed decisions surrounding bladder reconstruction. Further research will be conducted in a diverse sample of patients making decisions in a non-urban, community setting.

Feasibility and acceptability of “healthy directions” a lifestyle intervention for adults with lung cancer

The aims of this feasibility study of an adapted lifestyle intervention for adults with lung cancer were to (1) determine rates of enrollment, attrition, and completion of 5 nurse‐patient contacts; (2) examine demographic characteristics of those more likely to enroll into the program; (3) determine acceptability of the intervention; and (4) identify patient preferences for the format of supplemental educational intervention materials.

Clinician perspectives on symptom and quality of life experiences of patients during cancer therapies: Implications for eHealth

The purpose of this study was to explore clinician experiences with cancer symptom and quality of life (SQL) management from diagnosis throughout therapy in the ambulatory setting, plus identify preferences for a future SQL decision support system.

Experts' perspectives on the role of medical marijuana in oncology: A semistructured interview study

Expansion of medical marijuana (MM) laws in the United States may offer oncology new therapeutic options. However, the scientific evidence for MM remains in infancy. This study qualitatively explored professional opinion around the role of MM in cancer care.

Understanding health decision making: An exploration of homophily

The phenomenon of homophily first was described in Lazarsfeld and Mertons classic 1954 friendship analysis as a tendency for friendships to form between those who are alike in some respect. Although theories of decision making address a host of factors that affect the process, the influence of individuals with homophilic ties remains unaccounted for and unexplained. The purpose of this paper is to review theories relevant to decision making and describe what is known about the relationship between homophily and health care decision making. Further, we provide new evidence suggesting the influence of homophily on decision making in results from a randomized, multi-center clinical trial of American men with localized prostate cancer. A diverse sample of 293 men with a new diagnosis of localized prostate cancer reported relevant personal factors influencing the care management decision before randomization to a decision aid or usual care, between 2013 and 2015. Among these personal factors were the level of influence or importance ascribed to various individuals at the time of the treatment decision. One month later, participants reported how prepared they were for decision making. 123 men (42%) reported friends and/or coworkers as information sources, of which 65 (53%) indicated that friends and/or coworkers influenced the care decision. Men who reported friends/coworkers as information sources had significantly higher one-month preparation scores. Our review of decision making theories and practical applicability suggests the influence of homophilic relationships manifests in health care decision making. Faced with a list of options to manage health conditions, decision makers turn to known individuals in their environments, particularly those individuals with whom the decision maker can identify. Clinicians may solicit information from patients about influential others and explain how that support fits into the health decision at hand without dishonoring the importance of the homophilic relationship.

Cancer Anorexia and Cachexia: Screening in an Ambulatory Infusion Service and Nutrition Consultation

BACKGROUND: Cancer anorexia‐cachexia syndrome compromises physical function and nutritional and emotional well‐being. Systematic screening followed by nutrition referral for appropriate interventions is rare. OBJECTIVES: The purpose of this study was to pilot a screening process followed by nutritional assessment and intervention when warranted for patients with lung malignancies. METHODS: Adult patients with lung malignancies were invited to complete the 12‐item Anorexia/Cachexia Scale (A/CS‐12) on the day of chemotherapy initiation in ambulatory infusion. Those who scored at a preset threshold were referred to nutrition services for a comprehensive assessment and intervention plan. Those who scored better than the threshold completed the A/CS‐12 at each infusion visit for as many as 16 weeks. FINDINGS: 90 participants enrolled, and 46 scored in a moderate‐to‐severe‐risk category; of those, 42 were referred to nutrition services.

Algorithm-based decision support for symptom self-management among adults with Cancer: results of usability testing

BackgroundIt is essential that cancer patients understand anticipated symptoms, how to self-manage these symptoms, and when to call their clinicians. However, patients are often ill-prepared to manage symptoms at home. Clinical decision support (CDS) is a potentially innovative way to provide information to patients where and when they need it. The purpose of this project was to design and evaluate a simulated model of an algorithm-based CDS program for self-management of cancer symptoms.MethodsThis study consisted of three phases; development of computable algorithms for self-management of cancer symptoms using a modified ADAPTE process, evaluation of a simulated model of the CDS program, and identification of design objectives and lessons learned from the evaluation of patient-centered CDS. In phase 1, algorithms for pain, constipation and nausea/vomiting were developed by an expert panel. In phase 2, we conducted usability testing of a simulated symptom assessment and management intervention for self-care (SAMI-Self-Care) CDS program involving focus groups, interviews and surveys with cancer patients, their caregivers and clinicians. The Acceptability E-scale measured acceptability of the program. In phase 3, we developed design objectives and identified barriers to uptake of patient-centered CDS based on the data gathered from stakeholders.ResultsIn phase 1, algorithms were reviewed and approved through a consensus meeting and majority vote. In phase 2, 24 patients & caregivers and 13 clinicians participated in the formative evaluation. Iterative changes were made in a simulated SAMI-Self-Care CDS program. Acceptability scores were high among patients, caregivers and clinicians. In phase 3, we formulated CDS design objectives, which included: 1) ensure patient safety, 2) communicate clinical concepts effectively, 3) promote communication with clinicians, 4) support patient activation, and 5) facilitate navigation and use. We identified patient barriers and clinician concerns to using CDS for symptom self-management, which were consistent with the chronic care model, a theoretical framework used to enhance patient-clinician communication and patient self-management.ConclusionPatient safety and tool navigation were critical features of CDS for patient self-management. Insights gleaned from this study may be used to inform the development of CDS resources for symptom self-management in patients with other chronic conditions.