Medicine and Health Sciences Commons^™

Older Adults' Health Care Utilization A Year After Experiencing Fear Or Distress From Hurricane Sandy, Laura P Sands, Yimeng Xie, Rachel Pruchno, Allison Heid, Yili Hong

Rowan-Virtua School of Osteopathic Medicine Faculty Scholarship

OBJECTIVE: To determine whether self-reports of disaster-related psychological distress predict older adults' health care utilization during the year after Hurricane Sandy, which hit New Jersey on October 29, 2012.

METHODS: Respondents were from the ORANJ BOWL Study, a random-digit dialed sample from New Jersey recruited from 2006 to 2008. Medicare hospital, emergency department (ED) and outpatient claims data from 2012 and 2013 were matched to 1607 people age 65 and older in 2012 who responded to follow-up surveys conducted from July 2013 to July 2015 to determine their hurricane-related experiences.

RESULTS: In total, 7% (107) of respondents reported they experienced …

Relationships Among Apathy, Health-Related Quality Of Life, And Function In Huntington's Disease., Nora E Fritz, Nicholas R Boileau, Julie C Stout, Rebecca Ready, Joel S Perlmutter, Jane S Paulsen, Kimberly Quaid, Stacey Barton, Michael K Mccormack, Susan L Perlman, Noelle E Carlozzi

Rowan-Virtua School of Osteopathic Medicine Faculty Scholarship

Up to 90% of individuals with Huntington's disease (HD)-a progressive, inherited neurodegenerative disorder-experience apathy. Apathy is particularly debilitating because it is marked by a reduction in goal-directed behaviors, including self-care, social interactions, and mobility. The objective of this study was to examine relationships between variables of apathy, functional status, physical function, cognitive function, behavioral status/emotional function, and health-related quality of life. Clinician-rated measures of physical, cognitive, and behavioral function, including one clinician-rated item on apathy, and self-reported measures of physical function, health-related quality of life, and emotional, cognitive, and social function were collected in a single session from 487 persons …

A New Measure For End Of Life Planning, Preparation, And Preferences In Huntington Disease: Hdqlife End Of Life Planning, Noelle E Carlozzi, E A Hahn, S A Frank, J S Perlmutter, N D Downing, M K Mccormack, S Barton, M A Nance, S G Schilling, Hdqlife Site Investigators And Coordinators

Rowan-Virtua School of Osteopathic Medicine Faculty Scholarship

BACKGROUND: Huntington disease is a fatal inherited neurodegenerative disease. Because the end result of Huntington disease is death due to Huntington disease-related causes, there is a need for better understanding and caring for individuals at their end of life.

AIM: The purpose of this study was to develop a new measure to evaluate end of life planning.

DESIGN: We conducted qualitative focus groups, solicited expert input, and completed a literature review to develop a 16-item measure to evaluate important aspects of end of life planning for Huntington disease. Item response theory and differential item functioning analyses were utilized to examine …

Reliability And Validity Of The Hd-Pro-Triadtm, A Health-Related Quality Of Life Measure Designed To Assess The Symptom Triad Of Huntington's Disease., Nicholas R Boileau, Julie C Stout, Janes S Paulsen, David Cella, Michael K Mccormack, Martha A Nance, Samuel Frank, Jin-Shei Lai, Noelle E Carlozzi

Rowan-Virtua School of Osteopathic Medicine Faculty Scholarship

BACKGROUND: Huntington's disease (HD), is a neurodegenerative disorder that is associated with cognitive, behavioral, and motor impairments that diminish health related quality of life (HRQOL). The HD-PRO-TRIADTM is a quality of life measure that assesses health concerns specific to individuals with HD. Preliminary psychometric characterization was limited to a convenience sample of HD participants who completed measures at home so clinician-ratings were unavailable.

OBJECTIVES: The current study evaluates the reliability and validity of the HD-PRO-TRIADTM in a well-characterized sample of individuals with HD.

METHODS: Four-hundred and eighty-two individuals with HD (n = 192 prodromal, n = 193 early, and n …

New Measures To Capture End Of Life Concerns In Huntington Disease: Meaning And Purpose And Concern With Death And Dying From Hdqlife (A Patient-Reported Outcomes Measurement System)., N E Carlozzi, N R Downing, M K Mccormack, S G Schilling, J S Perlmutter, E A Hahn, J S Lai, S Frank, K A Quaid, J S Paulsen, D Cella, S M Goodnight, J A Miner, M A Nance

Rowan-Virtua School of Osteopathic Medicine Faculty Scholarship

PURPOSE: Huntington disease (HD) is an incurable terminal disease. Thus, end of life (EOL) concerns are common in these individuals. A quantitative measure of EOL concerns in HD would enable a better understanding of how these concerns impact health-related quality of life. Therefore, we developed new measures of EOL for use in HD.

METHODS: An EOL item pool of 45 items was field tested in 507 individuals with prodromal or manifest HD. Exploratory and confirmatory factor analyses (EFA and CFA, respectively) were conducted to establish unidimensional item pools. Item response theory (IRT) and differential item functioning analyses were applied to …

Hdqlife: Development And Assessment Of Health-Related Quality Of Life In Huntington Disease (Hd), N E Carlozzi, S G Schilling, J-S Lai, J S Paulsen, E A Hahn, J S Perlmutter, C A Ross, N R Downing, A L Kratz, M K Mccormack, M A Nance, K A Quaid, J C Stout, R C Gershon, R E Ready, J A Miner, S K Barton, S L Perlman, S M Rao, S Frank, I Shoulson, H Marin, M D Geschwind, P Dayalu, S M Goodnight, D Cella

Rowan-Virtua School of Osteopathic Medicine Faculty Scholarship

PURPOSE: Huntington disease (HD) is a chronic, debilitating genetic disease that affects physical, emotional, cognitive, and social health. Existing patient-reported outcomes (PROs) of health-related quality of life (HRQOL) used in HD are neither comprehensive, nor do they adequately account for clinically meaningful changes in function. While new PROs examining HRQOL (i.e., Neuro-QoL-Quality of Life in Neurological Disorders and PROMIS-Patient-Reported Outcomes Measurement Information System) offer solutions to many of these shortcomings, they do not include HD-specific content, nor have they been validated in HD. HDQLIFE addresses this by validating 12 PROMIS/Neuro-QoL domains in individuals with HD and by using established PROMIS …

Effects Of Caregiver Burden And Satisfaction On Affect Of Older End-Stage Renal Disease Patients And Their Spouses, Maureen Wilson-Genderson, Rachel A Pruchno, Francine P Cartwright

Rowan-Virtua School of Osteopathic Medicine Faculty Scholarship

We examined the extent to which a 2-factor model of affect explains how the burdens and satisfactions experienced by caregivers influence their own well-being and that of the spouses for whom they provide care. Using data from 315 older patients with end-stage renal disease and their spouses, we extended tests of Lawton et al.'s (1991) 2-factor model both longitudinally and dyadically. Multilevel modeling analyses partially support the 2-factor model. Consistent with the model, mean caregiver burden has a stronger effect on both caregiver and patient negative affect than does mean caregiver satisfaction. Contrary to the model, mean caregiver satisfaction has …

Depressive Symptoms And Marital Satisfaction In The Context Of Chronic Disease: A Longitudinal Dyadic Analysis, Rachel Pruchno, Maureen Wilson-Genderson, Francine P Cartwright

Rowan-Virtua School of Osteopathic Medicine Faculty Scholarship

These analyses examined the longitudinal relationships between depressive symptoms and marital satisfaction over a 2-year period as experienced by 315 patients with end-stage renal disease and their spouses. Using multilevel modeling, the authors examined both individual and cross-partner effects of depressive symptoms and marital satisfaction on patients and spouses, testing bidirectional causality. Results indicate that mean and time-varying depressive symptoms of both patients and spouses were associated with their own marital satisfaction. Although mean marital satisfaction was associated with own depressive symptoms for both patients and spouses, time-varying marital satisfaction did not affect depressive symptoms for either patients or spouses. …