Predictors of Spiritual Well-Being in Family Caregivers for Individuals with Parkinson's Disease.

Background: Parkinson's disease (PD) is a common neurodegenerative illness that causes disability through both motor and nonmotor symptoms. Family caregivers provide substantial care to persons living with PD, often at great personal cost. While spiritual well-being and spirituality have been suggested to promote resiliency in caregivers of persons living with cancer and dementia, this issue has not been explored in PD. Objective: The aim of this study was to identify predictors of spiritual well-being in PD patients' caregivers. Design: A cross-sectional analysis was performed. Our primary outcome measure, the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp), was measured in caregivers alongside measures of patient quality of life, symptom burden, global function, grief, and spiritual well-being and caregiver mood, burden, and perceptions of patient quality of life. Univariate correlation and multiple regression were used to determine associations between predictor variables and caregiver FACIT-Sp. Setting/Subjects: PD patient/caregiver dyads were recruited through three academic medical centers in the United States and Canada and regional community support groups. Results: We recruited 183 dyads. Patient faith, symptom burden, health-related quality of life, depression, motor function, and grief were significant predictors of caregiver spiritual well-being. Predictive caregiver factors included caregiver depression and anxiety. These factors remained significant in combined models, suggesting that both patient and caregiver factors make independent contributions to caregiver spiritual well-being. Conclusions: The present study suggests that both patient and caregiver factors are associated with spiritual well-being in PD. Further study is needed to understand the causal relationship of these factors and whether interventions to support caregiver spiritual well-being improve outcomes for caregivers or patients. Clinicaltrials.gov registration NCT02533921.

Predictors of general and health-related quality of life in Parkinson's disease and related disorders including caregiver perspectives.

INTRODUCTION: Our understanding of the determinants of quality of life (QOL) in people living with Parkinson's disease and related disorders (PDRD) has grown remarkably in the past decade. However, several areas remain understudied including determinants of general vs. health-related QOL, determinants in high-need patients, drivers of perceptions of caregivers vs. patients, and exploration of potential determinants outside of the traditional medical model. METHODS: This was a cross-sectional study of 210 PDRD patients and 175 caregivers who completed a battery of measures regarding general QOL (QOL-Alzheimer's disease; QOL-AD), health-related QOL (Parkinson's disease Questionnaire; PDQ-39), cognitive function, mood, grief, spiritual wellbeing, symptom burden, disease severity, disease stage, overall function, socioeconomic status, and healthcare utilization. Elastic net regularization modeling of variables significantly associated with our outcomes of interest were performed to determine predictors of general QOL, compare predictors of general vs. health-related QOL, and compare predictors of patient and caregiver perspectives on patient general QOL. RESULTS: General QOL was associated with spiritual wellbeing, depression, cognitive function, presence of a caregiver, and recent emergency department visits. In contrast, health-related QOL was associated with grief, symptom burden, income, disease stage, and utilization of counseling services. Caregiver ratings of patient general QOL were associated with patient symptom burden, patient grief, patient global function, caregiver burden, and caregiver spiritual wellbeing. CONCLUSIONS: There are notable differences in the predictors of general QOL, health-related QOL and caregiver perspectives on patient general QOL. These differences have important implications for clinical research and models of clinical care.

Patient and caregiver characteristics associated with caregiver burden in Parkinson's disease: a palliative care approach.

BACKGROUND: Parkinson's disease (PD) is a neurodegenerative disorder associated with caregiver burden. Higher rates of burden are associated with adverse outcomes for caregivers and patients. Our aim was to understand patient and caregiver predictors of caregiver burden in PD from a palliative care approach. METHODS: We conducted a cross-sectional analysis of baseline data from PD patients and caregivers in a randomized trial of outpatient palliative care at three study sites: University of Colorado, University of Alberta, and University of California San Francisco. The primary outcome measure of caregiver burden, the Zarit Burden Interview (ZBI), was compared against the following patient and caregiver variables: site of care, age, disease/caretaking duration, presence of atypical parkinsonism, race, income, education level, deep brain stimulation status, the Unified Parkinson's Disease Rating Scale (UPDRS) and Edmonton Symptom Assessment System Revised: Parkinson Disease (ESAS) for symptom severity and burden, the Montreal Cognitive Assessment (MoCA) for cognitive function, Quality of Life in Alzheimer's Disease (QOL-AD) scale for patient and caregiver perspectives on patient general quality of life, Parkinson's Disease Questionnaire 39 (PDQ-39) scale for health-related quality of life, Hospital Anxiety and Depression Scale (HADS) for patient and caregiver mood, Prolonged Grief Questionnaire, Functional Assessment of Chronic Illness Therapy- Spiritual Well-Being (FACIT-SP) of patient and caregiver, and Palliative Performance Scale for functional status. A stepwise multivariate linear regression model was used to determine associations with ZBI. RESULTS: A total of 175 patients (70.9% male; average age 70.7±8.1 years; average disease duration 117.2±82.6 months), and 175 caregivers (73.1% female; average age 66.1±11.1 years) were included. Patient spiritual well-being (FACIT-SP Faith subscale, r2=0.024, P=0.0380), patient health-related quality of life (PDQ-39, r2=0.161, P<0.0001), caregiver depression (HADS Depression, r2=0.062, P=0.0014), caregiver anxiety (HADS Anxiety, r2=0.077, P=0.0002), and caregiver perspective on patient quality of life (QOL-AD Caregiver Perspective, r2=0.088, P<0.0001) were significant contributors to ZBI scores. CONCLUSIONS: Patient and caregiver factors contribute to caregiver burden in persons living with PD. These results suggest targets for future interventions to improve caregiver support.

Yield of laboratory testing in pediatric ketogenic diet patients: Critical assessment of abnormal results and impact on clinical care.

OBJECTIVES: To retrospectively assess the incidence of high beta hydroxybutyrate, low bicarbonate (BIC), high acyl carnitine, low selenium, low magnesium, low zinc, low phosphorus, in a cohort of supplemented patients treated with the ketogenic diet (KD) for medically intractable epilepsy. To analyze effect of age, duration of exposure to KD, type of KD, and route of KD intake on lab abnormalities. To analyze the incidence of clinically actionable results, resulting in medical interventions based on abnormal results and to analyze costs of testing. METHODS: Retrospective chart review and statistical analysis. Association between abnormal values (binary) and categorical variables was tested with Chi-square/Fisher's exact test. Associations between abnormal values (binary) and continuous variables were analyzed with logistic regression. Statistical analyses were performed in SAS 9.4. RESULTS: We included 91 patients with average duration on diet of 46.73 months (IQR 18.8-75.5 months). Most patients were on the classic KD (81 KD- 59% on 4:1 ratio, 10 modified Atkins diet). 74% were orally fed and 70% completed lab visits to the 12-month mark. There was no significant association between abnormal laboratory parameters and duration of exposure, type of diet, route of administration. Younger children were more likely to have low BIC, high acyl carnitine. Older children were more likely to have low phosphorus. Less than 15% of patients reported clinical changes to suggest dietary deficiency in vitamins/ minerals and in < 11% of cases was an actionable laboratory parameter found. SIGNIFICANCE: Our study is the first to document the real-life incidence of selected tests being abnormal when following consensus guidelines on lab testing. Elimination of tests with low yield will result in cost savings of up to $USD 185 per visit. Low phosphorus is frequently found in patients on KD.

Validation of a performance-based assessment of cognitive functional ability in Parkinson's disease.

BACKGROUND: Outcome measures that capture functional abilities related to cognition offer the potential to demonstrate real-world effectiveness of cognitive-enhancing treatments. However, distinguishing functional disability related to cognition from that attributed to motor symptoms can be difficult in PD. A performance-based functional assessment allows for direct observation of activity of daily living skills and separation of cognitive from motoric disabilities. OBJECTIVES: Validate the University of California San Diego Performance-Based Skills Assessment in PD. METHODS: One hundred PD participants, ranging from normal cognition to dementia, completed the University of California San Diego Performance-Based Skills Assessment, a performance-based measure of cognitively demanding activities of daily living, as well as a neuropsychological battery and motor examination. Cognitive classification was determined by consensus conference, blinded to University of California San Diego Performance-Based Skills Assessment scores. Psychometric properties of the University of California San Diego Performance-Based Skills Assessment, including internal consistency, test-retest and inter-rater reliability, and discriminant validity for dementia, were examined. RESULTS: The University of California San Diego Performance-Based Skills Assessment demonstrated strong internal consistency (Cronbach's α = 0.82) and test-retest reliability (r = 0.89) and correlated strongly with global cognition (Mattis Dementia Rating Scale: r = 0.80; P < 0.001). University of California San Diego Performance-Based Skills Assessment regression models indicated greater contribution from cognitive explanatory variables (marginal partial: R2 = 0.33) than motor variables (marginal partial: R2 = 0.05), controlling for age, education, disease duration, and l-dopa equivalent dose. Additionally, the University of California San Diego Performance-Based Skills Assessment exhibited strong discriminant validity for dementia (area under the curve = 0.91). CONCLUSIONS: The University of California San Diego Performance-Based Skills Assessment is a valid measure of functional abilities related to cognition rather than motor symptoms in PD. Furthermore, it reliably distinguishes demented from nondemented participants. The University of California San Diego Performance-Based Skills Assessment may be considered as an outcome measure that combines cognitive and functional abilities in treatment trials for cognitive impairment in PD. © 2018 International Parkinson and Movement Disorder Society.

New-onset seizure during and after brain tumor excision: a risk assessment analysis.

OBJECTIVE Prophylactic use of antiepileptic drugs (AEDs) in seizure-naïve brain tumor patients remains a topic of debate. This study aimed to characterize a subset of patients at highest risk for new-onset perioperative seizures (i.e., intraoperative and postoperative seizures occurring within 30 days of surgery) who may benefit from prophylactic AEDs. METHODS The authors conducted a retrospective case-control study of all adults who had undergone tumor resection or biopsy at the authors' institution between January 1, 2004, and June 31, 2015. All patients with a history of preoperative seizures, posterior fossa tumors, pituitary tumors, and parasellar tumors were excluded. A control group was matched to the seizure patients according to age (± 0 years). Demographic data, clinical status, operative data, and postoperative course data were collected and analyzed. RESULTS Among 1693 patients who underwent tumor resection or biopsy, 549 (32.4%) had never had a preoperative seizure. Of these 549 patients, 25 (4.6%) suffered a perioperative seizure (Group 1). A total of 524 patients (95.4%) who remained seizure free were matched to Group 1 according to age (± 0 years), resulting in 132 control patients (Group 2), at an approximate ratio of 1:5. There were no differences between the patient groups in terms of age, sex, race, relationship status, and neurological deficits on presentation. Histological subtype (infiltrating glioma vs meningioma vs other, p = 0.041), intradural tumor location (p < 0.001), intraoperative cortical stimulation (p = 0.004), and extent of resection (less than gross total, p = 0.002) were associated with the occurrence of perioperative seizures. CONCLUSIONS While most seizure-naïve brain tumor patients do not benefit from perioperative seizure prophylaxis, such treatment should be considered in high-risk patients with supratentorial intradural tumors, in patients undergoing intraoperative cortical stimulation, and in patients in whom subtotal resection is likely.

The S.T.O.N.E. Score: a new assessment tool to predict stone free rates in ureteroscopy from pre-operative radiological features.

OBJECTIVE: To develop a user friendly system (S.T.O.N.E. Score) to quantify and describe stone characteristics provided by computed axial tomography scan to predict ureteroscopy outcomes and to evaluate the characteristics that are thought to affect stone free rates. MATERIALS AND METHODS: The S.T.O.N.E. score consists of 5 stone characteristics: (S) ize, (T)opography (location of stone), (O)bstruction, (N)umber of stones present, and (E)valuation of Hounsfield Units. Each component is scored on a 1-3 point scale. The S.T.O.N.E. Score was applied to 200 rigid and flexible ureteroscopies performed at our institution. A logistic model was applied to evaluate our data for stone free rates (SFR). RESULTS: SFR were found to be correlated to S.T.O.N.E. Score. As S.T.O.N.E. Score increased, the SFR decreased with a logical regression trend (p < 0.001). The logistic model found was SFR=1/(1+e^(-z)), where z=7.02-0.57•Score with an area under the curve of 0.764. A S.T.O.N.E. Score ≤ 9 points obtains stone free rates > 90% and typically falls off by 10% per point thereafter. CONCLUSIONS: The S.T.O.N.E. Score is a novel assessment tool to predict SFR in patients who require URS for the surgical therapy of ureteral and renal stone disease. The features of S.T.O.N.E. are relevant in predicting SFR with URS. Size, location, and degree of hydronephrosis were statistically significant factors in multivariate analysis. The S.T.O.N.E. Score establishes the framework for future analysis of the treatment of urolithiasis.

Demographic factors affect willingness to register as an organ donor more than a personal relationship with a transplant candidate.

BACKGROUND: Transplant candidate caregivers (TCCs) are an under-utilized but potentially devoted pool of advocates who themselves may be recruited to register for deceased organ donation. AIM: The purpose of this study was to assess and compare recruitment barriers to deceased donor registration efforts in TCCs and health fair attendees (HFAs). METHODS: A 42-item questionnaire assessing willingness to register as an organ donor and perceptions and knowledge about organ donation was administered to 452 participants (174 in Denver, 278 in San Francisco). Logistic regression, stratified by study site, was used to assess associations between explanatory variables and willingness to register as an organ donor. RESULTS: In Denver, 83 % of TCCs versus 68 % of HFAs indicated a willingness to register (p = 0.03). Controlling for study group (TCC vs HFA), predictors of willingness to register were female gender [odds ratio (OR) 2.4], Caucasian race (OR 2.3), college graduate (OR 11.1), married (OR 2.4) and higher positive perception of organ donation (OR 1.2), each p < 0.05. In San Francisco, 58 % of TCCs versus 70 % of HFAs indicated a willingness to register (p = 0.03). Controlling for study group (TCC vs HFA), predictors of willingness to register were Caucasian race (OR 3.5), college graduate (OR 2.2), married (OR 1.9), higher knowledge (OR 1.6) and higher positive perception of organ donation (OR 1.2), each p < 0.05. In both locales, Caucasians were more likely to have positive perceptions about organ donation and were more willing to register. CONCLUSIONS: Demographic characteristics, not personal connection to a transplant candidate, explain willingness to register as an organ donor.

Refugees in Denver and their perceptions of their health and health care.

BACKGROUND: Colorado receives approximately 2,500 refugees each year from countries all over the world. We assessed the self-perceived health of and barriers to care for refugees in the Denver metro area in order to understand better the needs of this population. METHODS: A 61-item questionnaire was completed by a convenience sample of 120 local refugees between June and December of 2009. RESULTS: Only 10% of respondents reported their health as excellent, while 31% rated it as either poor or fair. The most prominent barriers to care included unemployment (91%), language (46%), lack of health insurance (41%), lack of transportation (43%), and distrust of doctors (22%). CONCLUSIONS: Our study suggests that refugees in Denver face significant barriers that affect their access to health care. Recommendations include improved job and language skill programs, a health navigator program, and health care provider training on culturally effective care of this population.

The S.T.O.N.E. Score: A new assessment tool to predict stone free rates in ureteroscopy from pre-operative radiological features

Objective: To develop a user friendly system (S.T.O.N.E. Score) to quantify and describe stone characteristics provided by computed axial tomography scan to predict ureteroscopy outcomes and to evaluate the characteristics that are thought to affect stone free rates. Materials and Methods: The S.T.O.N.E. score consists of 5 stone characteristics: (S)ize, (T)opography (location of stone), (O)bstruction, (N)umber of stones present, and (E)valuation of Hounsfield Units. Each component is scored on a 1-3 point scale. The S.T.O.N.E. Score was applied to 200 rigid and flexible ureteroscopies performed at our institution. A logistic model was applied to evaluate our data for stone free rates (SFR). Results: SFR were found to be correlated to S.T.O.N.E. Score. As S.T.O.N.E. Score increased, the SFR decreased with a logical regression trend (p < 0.001). The logistic model found was SFR=1/(1+e.

Regression calibration for models with two predictor variables measured with error and their interaction, using instrumental variables and longitudinal data.

Regression calibration provides a way to obtain unbiased estimators of fixed effects in regression models when one or more predictors are measured with error. Recent development of measurement error methods has focused on models that include interaction terms between measured-with-error predictors, and separately, methods for estimation in models that account for correlated data. In this work, we derive explicit and novel forms of regression calibration estimators and associated asymptotic variances for longitudinal models that include interaction terms, when data from instrumental and unbiased surrogate variables are available but not the actual predictors of interest. The longitudinal data are fit using linear mixed models that contain random intercepts and account for serial correlation and unequally spaced observations. The motivating application involves a longitudinal study of exposure to two pollutants (predictors) - outdoor fine particulate matter and cigarette smoke - and their association in interactive form with levels of a biomarker of inflammation, leukotriene E4 (LTE 4 , outcome) in asthmatic children. Because the exposure concentrations could not be directly observed, we used measurements from a fixed outdoor monitor and urinary cotinine concentrations as instrumental variables, and we used concentrations of fine ambient particulate matter and cigarette smoke measured with error by personal monitors as unbiased surrogate variables. We applied the derived regression calibration methods to estimate coefficients of the unobserved predictors and their interaction, allowing for direct comparison of toxicity of the different pollutants. We used simulations to verify accuracy of inferential methods based on asymptotic theory.