Centralized Interactive Phenomics Resource: an integrated online phenomics knowledgebase for health data users.

OBJECTIVE: Development of clinical phenotypes from electronic health records (EHRs) can be resource intensive. Several phenotype libraries have been created to facilitate reuse of definitions. However, these platforms vary in target audience and utility. We describe the development of the Centralized Interactive Phenomics Resource (CIPHER) knowledgebase, a comprehensive public-facing phenotype library, which aims to facilitate clinical and health services research. MATERIALS AND METHODS: The platform was designed to collect and catalog EHR-based computable phenotype algorithms from any healthcare system, scale metadata management, facilitate phenotype discovery, and allow for integration of tools and user workflows. Phenomics experts were engaged in the development and testing of the site. RESULTS: The knowledgebase stores phenotype metadata using the CIPHER standard, and definitions are accessible through complex searching. Phenotypes are contributed to the knowledgebase via webform, allowing metadata validation. Data visualization tools linking to the knowledgebase enhance user interaction with content and accelerate phenotype development. DISCUSSION: The CIPHER knowledgebase was developed in the largest healthcare system in the United States and piloted with external partners. The design of the CIPHER website supports a variety of front-end tools and features to facilitate phenotype development and reuse. Health data users are encouraged to contribute their algorithms to the knowledgebase for wider dissemination to the research community, and to use the platform as a springboard for phenotyping. CONCLUSION: CIPHER is a public resource for all health data users available at https://phenomics.va.ornl.gov/ which facilitates phenotype reuse, development, and dissemination of phenotyping knowledge.

Nurse-led supportive Coordinated Transitional Care (CTraC) program improves care for veterans with serious illness.

BACKGROUND: The Coordinated Transitional Care (CTraC) program is a telephone-based, nurse-driven program shown to decrease readmissions. The aim of this project was to implement and evaluate an adapted version of CTraC, Supportive CTraC, to improve the quality of transitional and end-of-life care for veterans with serious illness. METHODS: We used the Replicating Effective Programs framework to guide adaptation and implementation. An RN nurse case manager (NCM) with experience in geriatrics and palliative care worked closely with inpatient and outpatient care teams to coordinate care. Eligible patients had a life-limiting diagnosis with substantial functional impairment and were not enrolled in hospice. The NCM identified veterans at VA Boston Healthcare System during an acute admission and delivered a protocolized intervention to define care needs and preferences, align care with patient values, optimize discharge plans, and provide ongoing, intensive phone-based case management. To evaluate efficacy, we matched each Supportive CTraC enrollee 1:1 to a contemporary comparison subject by age, risk of death or hospitalization, and discharge diagnosis. We used Kaplan-Meier plots and Cox-Proportional Hazards models to evaluate outcomes. Outcomes included palliative and hospice care use, acute care use, Massachusetts Medical Orders for Life Sustaining Treatment documentation, and survival. RESULTS: The NCM enrolled 104 veterans with high protocol fidelity. Over 1.5 years of follow-up, Supportive CTraC enrollees were 61% more likely to enroll in hospice than the comparison group (n = 57 vs. 39; HR = 1.61; 95% CI = 1.07-2.43). While overall acute care use was similar between groups, Supportive CTraC patients had fewer ICU admissions (n = 36 vs. 53; p = 0.005), were more likely to die in hospice (53 vs. 34; p = 0.008), and twice as likely to die at home with hospice (32.0 vs. 15.5; p = 0.02). There was no difference in survival between groups. CONCLUSIONS: A nurse-driven transitional care program for veterans with serious illness is feasible and effective at improving end-of-life outcomes.

Framework of the Centralized Interactive Phenomics Resource (CIPHER) standard for electronic health data-based phenomics knowledgebase.

The development of phenotypes using electronic health records is a resource-intensive process. Therefore, the cataloging of phenotype algorithm metadata for reuse is critical to accelerate clinical research. The Department of Veterans Affairs (VA) has developed a standard for phenotype metadata collection which is currently used in the VA phenomics knowledgebase library, CIPHER (Centralized Interactive Phenomics Resource), to capture over 5000 phenotypes. The CIPHER standard improves upon existing phenotype library metadata collection by capturing the context of algorithm development, phenotyping method used, and approach to validation. While the standard was iteratively developed with VA phenomics experts, it is applicable to the capture of phenotypes across healthcare systems. We describe the framework of the CIPHER standard for phenotype metadata collection, the rationale for its development, and its current application to the largest healthcare system in the United States.

Making meaning of cancer: A qualitative analysis of oral-digestive cancer survivors' reflections.

This qualitative study aimed to confirm and extend research on meaning making after cancer. In all, 119 adults aged 41 to 88 years (M = 65.50 years and standard deviation = 9.16 years) were interviewed 12 months after diagnosis of oral-digestive cancers. About half tried to understand why they got cancer (43%) and said that cancer changed their view of life (53%). Most (75%) reported that previous life experiences helped them cope with cancer. Cancer survivors made meanings in the areas of existential, social, and personal domains with both positive and negative content. Practitioners may wish to examine meaning making in these areas for those in distress after cancer.

Coordinated-Transitional Care for Veterans with Heart Failure and Chronic Lung Disease.

OBJECTIVES: Patients with congestive heart failure (CHF) and chronic obstructive pulmonary disease (COPD) account for most 30-day hospital readmissions nationwide. The Coordinated-Transitional Care (C-TraC) program is a telephone-based, nurse-driven intervention shown to decrease readmissions in Veterans Affairs (VA) and non-VA hospitals. The goal of this project was to assess the feasibility and efficacy of adapting C-TraC to meet the needs of complex patients with CHF and COPD in a large urban tertiary care VA medical center. DESIGN: We used the Replicating Effective Programs model to guide the implementation. The C-TraC nurse received intensive training in cardiology and pulmonology and worked closely with both inpatient and outpatient providers to coordinate care. Eligible patients were admitted with CHF or COPD and had at least one additional risk for readmission. SETTING: The nurse met patients in the hospital, participated in their discharge planning, and then provided intensive case management for up to 4 weeks. PARTICIPANTS: Over its initial 14 months, the program successfully enrolled 299 veterans with good fidelity to the protocol. MEASUREMENTS: A total of 43 (15.8%) C-TraC participants were rehospitalized within 30 days compared with 172 (21.0%) of historical controls matched 3:1 on age, risk of 90-day hospital admission, and discharge diagnosis. RESULTS: Participants were 54% less likely to be rehospitalized (odds ratio = .46; 95% CI = .24-.89). CONCLUSION: The program was financially sustainable. The total cost of care in the 30-day postdischarge period was $1842.52 less per C-TraC patient than per controls, leading the medical center to sustain and expand the program.

The Rural PILL Program: A Postdischarge Telepharmacy Intervention for Rural Veterans.

PURPOSE: To evaluate the efficacy of the Rural Pharmacological Intervention in Late Life (PILL) program, a quality improvement initiative in which a Boston-based pharmacist provided postdischarge telepharmacy care to veterans from rural Maine. METHODS: Using an automated screening tool, we identified 100 veterans aged 65 and older who had an acute care admission to VA medical centers in Boston or Maine and were at risk of problems with medication management. The PILL pharmacist called patients the week after hospital discharge to reconcile medications, assess adherence, and identify potentially inappropriate drugs. The pharmacist worked with each veteran's family and providers to resolve problems and increase support. To determine whether the intervention decreased acute care admissions, rehospitalizations, or deaths, we matched 1 unique control to each PILL patient by age, hospital location, length of stay, admitting service, and reason for admission. Logistic regression was performed to determine the OR and 95% CI of the outcomes. RESULTS: Patients were discharged on an average of 16 medications and with 4.4 medication changes. Overall, 61% of patients had clerical errors in the discharge summary, and potential clinical concerns were identified in over 75%. Veterans who received the intervention were 70% less likely than controls to have an acute care visit at 30 days postdischarge (7 vs 20 patients; OR = 0.30; 95% CI: 0.12-0.75). There was no difference in rates of hospital readmission or mortality. CONCLUSION: This pharmacist-led phone-based program was effective in decreasing acute care utilization within 30 days after hospital discharge.

Pain is prevalent and persisting in cancer survivors: differential factors across age groups.

OBJECTIVE: The Institute of Medicine documents a significant gap in care for long term side effects of cancer treatment, including pain. This paper characterizes age differences in the prevalence and predictive characteristics of pain to guide clinicians in identification and treatment. MATERIALS AND METHODS: A sample of 170 adults with head and neck, esophageal, gastric, or colorectal cancers were recruited from two regional Veterans Administration Medical Centers. Face to face interviews were conducted 6, 12, and 18 months after diagnosis with the PROMIS scale to assess pain and PHQ-9 scale to assess depression. Descriptive statistics characterized incidence and prevalence of pain impact and intensity ratings. Multivariate linear hierarchical regression identified clinical characteristics associated with pain in older versus younger age groups. RESULTS: Clinically significant pain was endorsed in one third (32%) of the sample, with younger adults reporting higher levels of the impact of pain on daily activities and work, and also higher pain intensity ratings than older adults. In younger adults, pain ratings were most associated with lower social support and higher depression, as well as advanced cancer stage. In older adults, pain was multifactorial, associated with baseline comorbidities, adjuvant treatment, and both combat post-traumatic stress disorder (PTSD) and depression. CONCLUSIONS: Pain is a significant persisting problem for one in three cancer survivors, requiring ongoing assessment, even months later. Important differences in pain's determinants and impact are present by age group. Identification and treatment of pain, as well as associated conditions such as depression, may improve the quality of life in cancer survivors.

Implementing yoga therapy adapted for older veterans who are cancer survivors.

OBJECTIVES: This goal of this paper is to describe the reach, application, and effectiveness of an 8-week yoga therapy protocol with older cancer survivors within a Veterans Health Administration setting. METHODS: To document the reach of this intervention, recruitment efforts, attendance, and practice rates were tracked. To explore the application of the protocol to this population, physical therapy preassessment and observations by the yoga therapist were recorded to ascertain necessary pose modifications. Effectiveness was measured through pre- and post-course structured interviews, tracking self-reported symptoms of combat-related posttraumatic stress disorder, depression, anxiety, fatigue, insomnia, and pain. RESULTS: Regarding reach, 15% of eligible veterans (n = 14) enrolled, participated in 3-16 classes (M±SD = 11.64±3.39), and practiced at home for 0-56 days (M±SD = 26.36±17.87). Participants were primarily Caucasian (n = 13), male (n = 13), ranged in age from 55 to 78 years (M±SD = 65.64±5.15), and had multiple medical problems. During application, substantial individualized modifications to the yoga therapy protocol were necessary. Effectiveness of the intervention was mixed. During post-course interviews, participants reported a variety of qualitative benefits. Notably, the majority of participants reported that breathing and relaxation techniques were the most useful to learn. Group comparisons of mean pre- and post-course scores on standardized measures showed no significant differences. CONCLUSIONS: A minority of older veterans express an interest in yoga, but those who do have high rates of class attendance and home practice. Careful physical pre-assessment and attentive therapists are required to undertake the adaptations required by participants with multiple comorbidities. The effectiveness of yoga in this setting requires additional study.

Implementing Yoga Therapy Adapted for Older Veterans Who Are Cancer Survivors.

OBJECTIVES: This goal of this paper is to describe the reach, application, and effectiveness of an 8-week yoga therapy protocol with older cancer survivors within a Veterans Health Administration setting. METHODS: To document the reach of this intervention, recruitment efforts, attendance, and practice rates were tracked. To explore the application of the protocol to this population, physical therapy pre-assessment and observations by the yoga therapist were recorded to ascertain necessary pose modifications. Effectiveness was measured through pre- and post-course structured interviews, tracking self-reported symptoms of combat-related posttraumatic stress disorder, depression, anxiety, fatigue, insomnia, and pain. RESULTS: Regarding reach, 15% of eligible veterans (n = 14) enrolled, participated in 3-16 classes (M±SD = 11.64±3.39), and practiced at home for 0-56 days (M±SD = 26.36±17.87). Participants were primarily Caucasian (n = 13), male (n = 13), ranged in age from 55 to 78 years (M±SD = 65.64±5.15), and had multiple medical problems. During application, substantial individualized modifications to the yoga therapy protocol were necessary. Effectiveness of the intervention was mixed. During post-course interviews, participants reported a variety of qualitative benefits. Notably, the majority of participants reported that breathing and relaxation techniques were the most useful to learn. Group comparisons of mean pre- and post-course scores on standardized measures showed no significant differences. CONCLUSIONS: A minority of older veterans express an interest in yoga, but those who do have high rates of class attendance and home practice. Careful physical pre-assessment and attentive therapists are required to undertake the adaptations required by participants with multiple comorbidities. The effectiveness of yoga in this setting requires additional study.

Cancer as a Criterion A Traumatic Stressor for Veterans: Prevalence and Correlates.

The diagnosis of cancer is an uncontrollable stressor posing the threat of death and disfigurement, often followed by repeated exposure to aversive reminders in the form of noxious treatments, persisting side effects, reengagement at times of surveillance, and the threat of recurrence. The phenomenon of cancer as a traumatic stressor is explored in this study, with a focus on the prevalence and correlates of posttraumatic stress disorder (PTSD) Criterion A in a sample of 170 mostly male adults who received health care at VA Medical Centers in Boston or Houston. Participants were interviewed 6 months after diagnosis with head and neck, gastro-esophageal, or colorectal cancers. Approximately half-42.9% to 65.9% depending on cut-score used-perceived cancer to be a traumatic stressor involving actual/threatened death or injury or threat to physical integrity as well as fear, helplessness, or horror. Younger veterans and those with current combat PTSD symptoms were more likely to perceive cancer as a traumatic stressor, as were those who perceived their prognosis as uncertain; 12% had PTSD symptoms above a PCLC cut score of 50, which is similar to incidence rates of PTSD associated with other traumatic stressors. Cancer, therefore, appears to be a serious and for some, traumatic stressor, suggesting the importance of screening for cancer related PTSD in cancer survivors, particularly those most at risk.

Cancer survivor rehabilitation and recovery: protocol for the Veterans Cancer Rehabilitation Study (Vet-CaRes).

BACKGROUND: Cancer survivors are a rapidly growing and aging population in the U.S., but there are many challenges associated with the survivorship experience such as functional disabilities and psychosocial distress. When viewed next to the general population, Veterans are especially at risk for these challenges as they are older and have a high incidence of co-morbid conditions. While the Institute of Medicine (IOM) has called for further cancer survivorship research to address these challenges, we still know little about this experience from the perspective of aging Veterans. METHODS/DESIGN: We conducted a longitudinal, mixed-methods study over the course of three and a half years at the Boston and Houston VA Medical Centers. We recruited 170 Veterans diagnosed with head and neck, colorectal and esophageal/gastric cancers that were identified from the VA tumor registry. Veterans completed three in-depth interviews, conducted at 6, 12 and 18 months after pathology confirmation, measuring the physical, social and psychological factors related to cancer survivorship. The longitudinal design allowed us to assess any changes in cancer related disability and distress over time. DISCUSSION: Weekly teleconference study team meetings were a key aspect to the research process. Issues related to recruitment, data management and analysis, and the dissemination of research results was discussed. Interviewers presented detailed case reports of completed interviews that allowed us to refine our interview protocols. We also discussed issues relevant to the Veteran population of which we were previously unaware and some of the challenges of the research process itself. This novel study produced a robust data set that documents the functional and psychosocial cancer survivorship experiences of aging Veterans. The longitudinal design will help us more fully understand the recovery patterns for this specific population, and identify the unique needs and gaps in health services.

Sexual self-esteem and psychosocial functioning in military veterans after cancer.

Little is known about the sexual well-being of male Veteran cancer survivors, or the relationship of sexual concerns to psychosocial adaptation postcancer. This study examined the association between sexual self-esteem and psychosocial concerns in male Veteran cancer survivors. Forty-one male survivors were recruited from a Veterans Affairs (VA) hospital to participate in a pilot study addressing cancer survivorship care for Veterans. Sixty- to 90-minute interviews were conducted, assessing sociodemographic, medical, stress/burden (cancer-related posttraumatic stress disorder [PTSD], depression), and resource (social support, post-traumatic growth) variables. Twenty-one (51.2%) Veteran cancer survivors reported lowered sexual self-esteem as a result of cancer, which corresponded to significantly higher levels of depression and cancer-related PTSD. The lowered sexual self-esteem group also indicated significantly lower social support. Veteran cancer survivors with lowered sexual self-esteem tend to have higher levels of stress and lower levels of resources, putting them at risk for lowered quality of life. This increased risk highlights the importance of addressing sexual well-being in the survivorship care of Veterans.

In the Veteran's Voice: Psychosocial Needs After Cancer Treatment.

To better understand psychosocial distress in veterans treated for cancer, these researchers conducted a series of 3 focus groups. Emerging themes suggest that cancer survivorship is a process, and interventions need to be tailored to each patient.