Griffin, Joan M.

Background Perceived social isolation has been shown to have a negative impact on health outcomes, particularly among older adults. However, these relationships have not been fully examined among patients with heart failure. Methods and Results Residents from 11 southeast Minnesota counties with a first‐ever International Classification of Diseases, Ninth Revision ( ICD‐9 ) code 428 for heart failure between January 1, 2013, and March 31, 2015 (N=3867), were prospectively surveyed to measure perceived social isolation. A total of 2003 patients returned the survey (response rate, 52%); 1681 patients completed all questions and were retained for analysis. Among these patients (53% men; mean age, 73 years), ≈19% (n=312) had moderate perceived social isolation and 6% (n=108) had high perceived social isolation. After adjustment, patients reporting moderate perceived social isolation did not have an increased risk of death, hospitalizations, or emergency department visits compared with patients reporting low perceived social isolation; however, patients reporting high perceived social isolation had >3.5 times increased risk of death (hazard ratio, 3.74; 95% confidence interval [ CI ], 1.82–7.70), 68% increased risk of hospitalization (hazard ratio, 1.68; 95% CI , 1.18–2.39), and 57% increased risk of emergency department visits (hazard ratio, 1.57; 95% CI , 1.09–2.27). Compared with patients who self‐reported low perceived social isolation, patients reporting moderate perceived social isolation had a 16% increased risk of outpatient visits (rate ratio, 1.16; 95% CI , 1.03–1.31), whereas those reporting high perceived social isolation had a 26% increased risk (rate ratio, 1.26; 95% CI , 1.04–1.53). Conclusions In patients with heart failure, greater perceived social isolation is associated with an increased risk of death and healthcare use. Assessing perceived social isolation during the clinical encounter with a brief screening tool may help identify patients with heart failure at greater risk of poor outcomes.

Objectives To (1) test whether patient attitudes toward intake forms at three Midwestern outpatient clinics are significantly more negative among those who are asked to complete SOGI questions versus those who are not; and (2) gain an in‐depth understanding of patient concerns about SOGI questions. Study Setting Data were collected between 6/29/2015 and 2/29/2016 from new patients ( N = 491) who presented at three outpatient clinics in a large academic medical center. This study was originally a quality improvement project, and later, institutional review board approval was obtained for secondary data analysis. Study Design Two‐stage mixed‐methods study. (1) Experimental: New patients at three sites were randomly assigned to complete either routine intake forms (control) or routine intake forms with SOGI questions (experimental); and (2) qualitative: interviews with patients who responded negatively to SOGI questions. Principal Findings There were no significant differences in patient attitudes between experimental and control groups ( p > .05). Of those who received SOGI questions, only 3 percent reported being distressed, upset, or offended by the SOGI questions. Conclusions Collection of SOGI data as a part of the routine clinical patient intake process is not distressing to 97 percent of patients who are heterosexual, cisgender, and older than 50 years.

Background: A diagnosis of heart failure (HF) often requires a comprehensive lifestyle change to maintain disease stability. When patients with HF are married, the spouse frequently assumes the caregiving role. Our objectives were to describe the health of spouses of married patients with HF, and examine whether the health of a spouse impacts patient outcomes. Methods and Results: We identified 905 patients that were married at the time of incident HF diagnosis in Olmsted County, MN, from 2000 to 2012. Using Rochester Epidemiology Project resources, the patient and their spouse’s comprehensive longitudinal health histories were linked. Spousal health at patient HF diagnosis was assessed by comorbidity burden, self-reported difficulty with activities of daily living and prior hospitalizations. The associations of spousal health with patient outcomes and patient death with spousal outcomes were examined using Cox and Andersen–Gill models. Spouses of patients with HF were elderly (mean age, 71 years), often had comorbid conditions, and 16% had difficulty with ≥1 activities of daily living. After adjustment for patient age, sex, and comorbidity, there were no independent associations of spousal health and patient risk of death or hospitalization after HF diagnosis. However, the risk of hospitalization (adjusted hazard ratio, 1.34; 95% confidence interval, 1.11–1.60; P =0.002) and death (hazard ratio, 2.10; 95% confidence interval, 1.60–2.75; P <0.001) increased in the surviving spouse after patient death. Conclusions: We found no evidence that the health of a spouse impacts patient outcomes after HF diagnosis. However, after a patient with HF dies, their surviving spouse’s risk of hospitalization and death increases.

Financial burden from cancer treatment is increasingly being recognized as a threat to optimal access, quality, and outcomes of cancer care for patients. Although research in the area is moving at a fast pace, multiple questions remain unanswered, such as how to practically integrate the assessment and management of financial burden into routine health care delivery for patients with cancer. Although psychological distress screening for patients undergoing cancer treatment now is commonplace, the authors raise the provocative idea of universal screening for financial distress to identify and assist vulnerable groups of patients. Herein, the authors outline the arguments to support screening for financial burden in addition to psychological distress, examining it as an independent patient‐reported outcome for all patients with cancer at various time points during their treatment. The authors describe the proximal and downstream impact of such a strategy and reflect on some challenges and potential solutions to help integrate this concept into routine cancer care delivery. Cancer 2017;123:4092–4096. © 2017 American Cancer Society.

Abstract We sought to understand the comprehensiveness of consumer-oriented information describing the availability of shared access to adult patient portals from publicly reported information on institutional websites of 20 large and geographically diverse health systems. All 20 health systems reported that they offer patients the ability to share access to their patient portal account with a family member or friend; however, the comprehensiveness of information regarding registration procedures, features, and terminology varied widely. Half of the systems (n = 10) reported having shared access available on their patient portal registration webpage. Few systems (n = 2) reported affording patients the ability to differentiate specific role-based privileges. No systems reported uptake of shared access among adult patients, which was variably described as “proxy,” “caregiver,” “parental,” or “delegate” access. Findings suggest that engaging families through health information technology will require greater efforts to promote awareness and differentiate privileges that respect patients’ choice and control in information-sharing preferences.

While dementia caregivers are regarded as a population with high unmet needs, there is little consensus as to how caregivers’ needs should be conceptualized and measured. This article describes how dementia caregivers’ needs are currently assessed in the scientific literature with the goal of suggesting guidelines for the enhancement of future measurement of caregiver needs. A review of 26 articles identified overarching themes within measurement approaches including variation in methodological rigor, proxy indicators of need, dual needs assessment of caregiver and person with dementia (PWD), and third-party needs assessment. We recommend future research dedicate theoretical attention to the conceptualization and classification of caregivers’ needs to build a stronger foundation for measurement. The measurement development process should capitalize on mixed-methodology and follow instrument development and validation guidelines set forth by measurement theory. Reliable and valid instruments are essential to developing services and policies that address dementia caregivers’ needs.

187 Background: Patient-reported evaluations of interpersonal quality of care are essential elements of quality of cancer care assessment. At times, patients may be unable to report themselves on their care experience and systems may rely on proxy reports. The validity of this approach is dependent on the degree to which family caregiver assessments are concordant with patient assessments. Methods: A VA cohort of colorectal cancer (CRC) patients and their caregivers both completed a self-administered questionnaire on the quality of VA cancer care in 3 specific domains: surgery, chemotherapy overall and chemotherapy nursing care, all measured on a 5-point Likert scale. Because the kappa statistic penalizes skewed distributions which are commonly seen in patient satisfaction reports, agreement between patients and caregivers on perceptions of quality care were measured using Gwet’s AC2 statistic. Stratified analyses on caregiver burden, race, education, and age as well as patient’s stage of disease were used to assess variation in agreement. Results: 417 caregiver-patient dyads completed the survey (70% response rate), of whom 362 (86.8%) had surgery and 195 (46.8%) had chemotherapy. Overall agreement was high for the 3 quality of care domains: AC2 (95% CI): 0.870 (0.838, 0.903) for surgery, 0.835 (0.786, 0.884) for chemotherapy overall and 0.906 (0.868, 0.944) for chemotherapy nurses. Stratified analyses of agreement showed particular populations of higher or lower agreement; however the findings were inconsistent across the three domains and most were not statistically significant. Patients with lower stage (I-II) had higher agreement than higher stages (III-IV) (AC2: 0.967 and 0.879 respectively, P = 0.006) but only in the chemotherapy nurses domain. For the surgery domain, age was the only significant difference in agreement (0.816, 0.912, and 0.838 for < 50, 51-65, and > 65 respectively, P = 0.03). Conclusions: Family caregiver reports on the quality of CRC care were highly concordant with patient reports. Therefore, family caregivers may be able to provide reasonable proxy report on measures of quality of cancer care when patient reports are unavailable.

226 Background: Patients undergoing cancer treatment often need support from an informal caregiver to help manage symptoms. Self-efficacy (SE) in caregiving refers to confidence in being able to care for the patient’s needs. Low SE has been associated with increased caregiver burden and mental health symptoms, which in turn, can affect the quality of informal care provided. The objective of this study was to examine the relationship between caregiver training received from cancer care providers and SE in caregivers of patients with colorectal cancer (CRC). Methods: Caregivers of CRC patients diagnosed in 2009 were invited to complete a self-administered questionnaire. Caregivers were asked about specific patient problems (pain, bowel, fatigue, medications, and other). Caregiver perceptions of training adequacy and SE were assessed on a problem specific basis. The patient’s stage of disease was obtained from cancer registry data. Associations between training and SE were examined for each problem using multivariate logistic regression and adjusted for age, relationship to patient, race, care burden, level of education, stage of disease, perception of patient’s health, and general confidence as a caregiver. Results: 417 caregivers completed the survey (70% response rate), of whom 374 (90%) were female and 284 (68%) were the patient’s spouse/partner. The number of caregivers reporting inadequate training for CRC-related problems were pain 77 (38%), bowel 80 (38%), fatigue 121 (48%), medication 65 (26%), and other 101 (40%). The odds of having low SE were significantly higher among those with perceptions of inadequate training across the following CRC-related problems: pain, 10.10 (3.36, 30.39); bowel, 5.04 (1.98, 12.82); fatigue, 8.45 (3.22, 22.15); managing medications, 9.00 (3.30, 24.51); and other, 3.87 (1.68, 8.93). Conclusions: This study showed a significant association between caregiver training and SE in a cross-sectional study. Given that the perception of inadequate training among caregivers was common, further exploration of the longitudinal impact of training on caregiver SE should be done to identify interventions to help improve the experience of cancer caregivers.