BACKGROUND: As cancer survivorship increases, health care systems will be challenged to meet patient needs. With the limited availability of clinician time and resources, novel methods of using patient-reported outcomes may improve the quality and efficiency of follow-up care in patients with breast cancer. METHODS: The authors conducted a randomized trial in patients with TNM stage I to III breast cancer comparing standard care with SIS.NET (System for Individualized Survivorship Care, based on patient self-reported data, with review by Nurse practitioners, targeted Education, and Triage), a follow-up protocol including integration of online health questionnaires at 3-month intervals and the evaluation of self-reported symptoms monitored and addressed remotely by a nurse practitioner (NP). The primary endpoint was to quantify the time between symptom reporting and remote evaluation of symptoms. The secondary endpoint was to compare use of health care resources (breast cancer-related visits, total medical appointments, and laboratory and imaging studies) over an 18-month period. RESULTS: A total of 102 participants were enrolled; 2 patients were excluded due to cancer recurrence. In the SIS.NET arm, 74% of new or changed self-reported symptoms were reviewed by a NP in <3 days. SIS.NET patients reported more new or changed symptoms compared with standard care patients (7.36 vs 3.2; P 5.0045). During the 18-month trial, there were no statistically significant differences noted between the SIS.NET and standard care arms with regard to oncology-related appointments (mean, 4.2 vs 4.1 appointments), number of physician visits (mean, 10.8 vs 9.6 visits), or medical tests (mean, 5.5 vs 5 tests). CONCLUSIONS: Integration of online health questionnaires with remote review by a NP facilitated symptom reporting and may provide a means of convenient symptom assessment, but it did not appear to reduce health care resource use. Cancer 2015;121:893-9.

IntroductionThe Advancing Research and Treatment in Frontotemporal Lobar Degeneration and Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects longitudinal studies were designed to describe the natural history of familial‐frontotemporal lobar degeneration due to autosomal dominant mutations.MethodsWe examined cognitive performance, behavioral ratings, and brain volumes from the first time point in 320 MAPT, GRN, and C9orf72 family members, including 102 non–mutation carriers, 103 asymptomatic carriers, 43 mildly/questionably symptomatic carriers, and 72 carriers with dementia.ResultsAsymptomatic carriers showed similar scores on all clinical measures compared with noncarriers but reduced frontal and temporal volumes. Those with mild/questionable impairment showed decreased verbal recall, fluency, and Trail Making Test performance and impaired mood and self‐monitoring. Dementia was associated with impairment in all measures. All MAPT carriers with dementia showed temporal atrophy, but otherwise, there was no single cognitive test or brain region that was abnormal in all subjects.DiscussionImaging changes appear to precede clinical changes in familial‐frontotemporal lobar degeneration, but specific early clinical and imaging changes vary across individuals.

Our objective was to evaluate the association between cognitive-behavioral deficits and patient quality of life (QoL), caregiver burden, and disease stage in a population of patients with amyotrophic lateral sclerosis (ALS). We administered the ALS Cognitive-Behavioral Screen™ to 86 patients with ALS. Multiple regression was used to evaluate the association between cognitive or behavioral deficits and disease stage, patient QoL, and caregiver burden while controlling for clinically important variables. Of 86 participants enrolled, 53 (62%) had some degree of cognitive impairment, 32 (37%) were behaviorally impaired and four met both cognitive and behavioral screening criteria for frontotemporal dementia (FTD). The severity of cognitive-behavioral deficits was not associated with patient QoL. More pronounced cognitive deficits (beta = -1.4, p = 0.04) and behavioral symptoms (-0.69, p < 0.001) predicted higher caregiver burden. Self-reported QoL was lower in patients with more depressive symptoms (beta = -0.32, p < 0.001) and more advanced disease (beta =0.10, p = 0.01). In conclusion, general QoL for patients with ALS is not associated with cognitive or behavioral deficits. More severe cognitive deficits and caregiver-reported behavioral symptoms predict higher caregiver burden. Routine cognitive-behavioral screening can identify patients who require full neuropsychological examination, inform patient counseling, and identify caregivers in need of early, targeted interventions.

Cognitive-behavioral change is a key aspect of disease heterogeneity in ALS. Executive function in ALS overall remains stable over 7 months as detected by an administered screening tool. However, patients may develop caregiver-reported behavioral symptoms in that time period. Screening for caregiver-reported symptoms has a particular utility in predicting future clinical decline, increased caregiver burden, and worsening patient QOL.

Breast cancer (BC) patients experience multiple symptoms as a result of diagnosis and treatment. While surveillance for detecting cancer recurrence is fundamental to follow-up care, managing symptoms, and promoting health behaviors are equally important. UCSF has implemented a secure online health questionnaire enabling BC patients to provide updates of their health history and symptoms. We randomly selected a sample of stage I-III BC patients (n = 106) who completed a questionnaire before a medical oncology visit between August 2010 and January 2011 and consented to have data used for research. We conducted a chart review calculating the number of symptoms reported in the questionnaire, the clinic note only, and both questionnaire and clinic note, excluding chronic symptoms addressed previously. Self-reported data on exercise and alcohol consumption was compared to documentation of these lifestyle factors in clinic notes. Patients reported significantly more symptoms using the online questionnaire (mean = 3.8, range 0-13) than were documented by the provider in clinic notes (mean = 1.8, range 0-7; p < 0.001 for the difference). A regression plot comparing the percentage of symptoms agreed upon by the patient and provider and the percentage of symptoms addressed yields a slope of 0.56 (95 % CI 0.41-0.71). The number of self-reported symptoms correlates with self-reported Karnofsky scale such that the number of symptoms reported by the patient increases linearly with this score until a threshold and it then plateaus (p < 0.001). Exercise behavior and alcohol consumption were reported in 100 % of the online questionnaires, but was documented in only 30/106 (28 %) and 75/106 (70 %) of charts reviewed. In 19/75 (25 %) charts with alcohol consumption documented, there was substantial discordance between patient and clinician reporting. Electronic data collection of BC patient-reported outcomes has a positive effect on symptom management and identification of opportunities for risk-reducing behavior change.

Background:There is growing interest in health-related quality of life (HRQOL) as a comprehensive view of the patient’s well-being, guiding concept for the treating clinician, and therapeutic trial outcome measure for patients with PD. The key determinants of HRQOL have not been investigated in large populations of people with PD (PwPD). Our objective was to evaluate correlates of health-related quality of life (HRQOL) in a large, online cohort of PwPD.Methods:As part of an ongoing online cohort study, we performed a cross-sectional analysis at enrollment of 23,058 PwPD. We conducted univariate and stepwise multivariate linear regression analyses of HRQOL as measured by the EQ-5D-5L tool. In addition, we performed an interaction analysis to evaluate heterogeneity of the effect of motor symptoms on HRQOL and Spearman correlation analysis to evaluate the association of non-motor symptoms with HRQOL.Results:In the multivariate linear regression model, participants with moderate or severe depression, more severe motor symptoms, and a higher burden of medical comorbidities had the most substantially decreased HRQOL as measured by the EQ index (beta=-0.11, -0.18, -0.02, -0.01 respectively, p<0.001 for all). An interaction analysis showed that more severe motor symptoms had a higher impact on individuals of female sex, lower educational level, lower income, more severe depression, and more severe cognitive impairment (p<0.01 for interaction terms). Neuropsychiatric symptoms and falls had the most negative associations with HRQOL (rho=-0.31-0.37, p<0.0001).Discussion:Potentially treatable motor and non-motor symptoms, particularly neuropsychiatric symptoms, account for a large amount of the variation in HRQOL in PwPD. Motor symptoms may have differential effects on HRQOL in different demographic and clinical subpopulations, highlighting important areas for future health disparities research. Our findings provide targets for clinician intervention and future research on symptom management to optimize HRQOL in PD.Classification of Evidence:This study provides Class II evidence that motor and neuropsychiatric symptoms are associated with HRQOL in PwPD.

ObjectiveTo evaluate the association between baseline apathy and probable incident dementia in a population-based sample of community-dwelling older adults.MethodsWe studied 2,018 white and black community-dwelling older adults from the Health, Aging, and Body Composition (Health ABC) study. We measured apathy at year 6 (our study baseline) with the modified Apathy Evaluation Scale and divided participants into tertiles based on low, moderate, or severe apathy symptoms. Incident dementia was ascertained over 9 years by dementia medication use, hospital records, or clinically relevant cognitive decline on global cognition. We examined the association between apathy and probable incident dementia using a Cox proportional hazards model adjusting for demographics, cardiovascular risk factors, APOE-4 status, and depressed mood. We also evaluated the association between the apathy group and cognitive change (as measured by the Modified Mini Mental State Examination and Digit Symbol Substitution Test over 5 years) using linear mixed effects models.ResultsOver 9 years of follow-up, 381 participants developed probable dementia. Severe apathy was associated with an increased risk of dementia compared to low apathy (25% vs 14%) in unadjusted (HR 1.9, 95% CI 1.5–2.5) and adjusted models (HR 1.7, 95% CI 1.3–2.2). Greater apathy was associated with worse cognitive score at baseline, but not rate of change over time.ConclusionIn a diverse cohort of community-dwelling adults, apathy was associated with increased risk of developing probable dementia. This study provides novel evidence for apathy as a prodrome of dementia.

Summary During the haematogenous dissemination of this acute rat T-cell (Roser) leukaemia, infiltration of both epididymal and testicular interstitial tissue has now been demonstrated, probably as an invariable occurrence. The gonadal duct system itself was not invaded. In contrast to an earlier histopathological study with this leukaemia, meningeal invasion has also been encountered during routine passage. Furthermore, subsequent to remissions induced by carmustine (BCNU), relapse could occur as long as 80 days after the 20 day end point in control animals. This was associated with extensive infiltration of the meninges as well as in the male gonadal interstitium, the proximal epididymis being particularly vulnerable. Two doses of carmustine at intervals of one week could eradicate the disease even during the phase of logarithmic growth of the leukaemic cells, this result depending upon the level of treatment and time of dosing post-inoculation with leukaemic cells. Females carrying the disease were shown to be more readily cured than males, probably related to entry of leukaemia cells into the gonadal interstitium.This T-cell leukaemia appears to be an excellent model for the study and prospective chemotherapy of testicular relapse in acute lymphoblastic leukaemia.