Medicine and Health Sciences Commons^™

Experiences Of Working Sandwich Generation Caregivers, Kimberly Ben, Susan Macdermott

Spring 2024 Virtual OTD Capstone Symposium

This poster presents an insightful exploration into the lives of Working Sandwich Generation Caregivers (WSCs), a group defined as individuals aged 30-65 who simultaneously provide care for both aging adults (over 65 years old) and younger dependents (29 years old or younger), while also managing their careers. The study delves deep into the unique challenges and experiences faced by WSCs, aiming to highlight the occupational, emotional, and physical demands inherent in their roles. Through qualitative research methods, including interviews and occupational therapy assessments, the manuscript offers a comprehensive look at the balancing act WSCs perform daily. It seeks to inform …

Health Care Use Experiences Of Ethnoculturally Diverse Immigrant Older Adults: A Meta-Ethnography, Lorna De Witt, Kathryn A. Pfaff, Roger Reka, Noeman Ahmad Mirza

Nursing Publications

Purpose

Current and predicted continued dramatic increases in international migration and ethnocultural diversity of older adult cohorts pose challenges for health care services. Review studies on ethnoculturally diverse older adults and health care show a lack of focus on their service use experiences. This study aims to report a meta-ethnography that addresses this knowledge gap through answering the review question: How do ethnoculturally diverse older adults who are immigrants experience health care services?

Design/methodology/approach

The authors applied a seven-phase method of meta-ethnography to guide the review. The authors conducted two literature searches (April 2018 and June 2020) in MEDLINE, CINAHL, …

Changes In Sleep Effort Mediate Insomnia Severity In Older Adults Following Online Cognitive Behavioural Therapy, Yvonne Kutzer, Lisa Whitehead, Eimear Quigley, Mandy Stanley

Research outputs 2022 to 2026

Background

To examine treatment mechanisms of digitally delivered cognitive behavioural therapy for insomnia (CBT-I), this study assessed the mediating effects of dysfunctional beliefs, hyperarousal, locus of control, self-efficacy, sleep effort, and safety behaviours on self-reported insomnia severity in older adults before and following the completion of a self-guided, online CBT-I program.

Methods

The baseline and follow-up measurements were completed by 62 older adults (55 female, 89%). This was a two-condition within-participant design. Mediation analysis using a parallel mediation model was conducted using the MEMORE macro for repeated measure designs.

Results

Out of all the included mediator variables, only a reduction …

Barriers To Colorectal Cancer Screening For Low-Income Hispanic Men In Urban Areas Between 50-75, Alex Vega

Rowan-Virtua Research Day

Colorectal cancer (CRC) is the second leading cause of cancer-related deaths in the United States. Although CRC screening rates have improved in non-Hispanic whites (NHW), Hispanic adult males (HAM) aged 50-75 in urban areas continue to experience low screening rates and higher CRC morbidity and mortality. This review aims to identify the barriers to CRC screening among HAM and propose targeted interventions to increase screening rates. A comprehensive literature review was conducted using databases such as PubMed, Scopus, and Google Scholar. Key search terms included "colorectal cancer", "screening", "Hispanic adult males", "urban", "barriers", and "interventions". Factors identified include poverty, language …

Fruit And Vegetable Intake And Home Nutrition Environment Among Low-Income Minority Households With Elementary-Aged Children, Brittni Naylor Metoyer, Ru-Jye Chuang, Minjae Lee, Christine Markham, Eric L Brown, Maha Almohamad, Jayna M Dave, Shreela V Sharma

Journal Articles

Racial/ethnic and socioeconomic differences were shown to have an influence on child fruit and vegetable intake. This study examined the associations between parent and child fruit and vegetable intake and the home nutrition environment among Hispanic/Latino and African American families. Through a cross-sectional study design, self-reported surveys (

Personal Mastery And All-Cause Mortality Among Older Americans Living With Diabetes, Ho-Jui Tung, Ming-Chin Yeh, Randall Ford, Gulzar H. Shah

Department of Health Policy and Community Health Faculty Publications

Introduction: Higher personal mastery is associated with better physical functioning, wellbeing, and longevity among older populations. However, few studies have focused on whether personal mastery is protective against mortality among older adults living with diabetes over time.
Methods: A total of 1,779 participants were identified from an off-year survey of the Health and Retirement Study. Proportional Hazard Models were used to evaluate the significance of selected variables in predicting the survival of participants over a 13-year period.
Results: A substantial proportion (46.7%) of the diabetic patients had survived by the end of 2016. Adults with lower mastery …

Usability Of Electronic Health Record-Generated Discharge Summaries: Heuristic Evaluation., Patrice Dolhonde Tremoulet, Priyanka D Shah, Alisha A Acosta, Christian W Grant, Jon T Kurtz, Peter Mounas, Michael Kirchhoff, Elizabeth Wade

Faculty Scholarship for the College of Science & Mathematics

BACKGROUND: Obtaining accurate clinical information about recent acute care visits is extremely important for outpatient providers. However, documents used to communicate this information are often difficult to use. This puts patients at risk of adverse events. Elderly patients who are seen by more providers and have more care transitions are especially vulnerable.

OBJECTIVE: This study aimed to (1) identify the information about elderly patients' recent acute care visits needed to coordinate their care, (2) use this information to assess discharge summaries, and (3) provide recommendations to help improve the quality of electronic health record (EHR)-generated discharge summaries, thereby increasing patient …

Implementation Of Post Falls Huddles In Skilled Nursing Facility, Princess Lomax

Evidence-Based Practice Project Reports

The purpose of this paper is to discuss the quality improvement project, implementation of the post fall huddle in a long-term care facility. Falls are the most common problem in adults 65 years and older. Falls in this population can have devastating effects, often leading to significant changes in morbidity or death. Adults in long term care settings have an increased risk of falling and having a subsequent fall due to an acute illness, weakness, or confusion (CDC, 2015). At the skilled facility, there has been a significant increase in hospitalizations due to injuries sustained from falls. To address this …

Post-Acquisition Processing Confounds In Brain Volumetric Quantification Of White Matter Hyperintensities, Ahmed A. Bahrani, Omar M. Al-Janabi, Erin L. Abner, Shoshana H. Bardach, Richard J. Kryscio, Donna M. Wilcock, Charles D. Smith, Gregory A. Jicha

Neurology Faculty Publications

BACKGROUND: Disparate research sites using identical or near-identical magnetic resonance imaging (MRI) acquisition techniques often produce results that demonstrate significant variability regarding volumetric quantification of white matter hyperintensities (WMH) in the aging population. The sources of such variability have not previously been fully explored.

NEW METHOD: 3D FLAIR sequences from a group of randomly selected aged subjects were analyzed to identify sources-of-variability in post-acquisition processing that can be problematic when comparing WMH volumetric data across disparate sites. The methods developed focused on standardizing post-acquisition protocol processing methods to develop a protocol with less than 0.5% inter-rater variance.

RESULTS: A series …

Co-Prescription Network Reveals Social Dynamics Of Opioid Doctor Shopping, Brea L. Perry, Kai Cheng Yang, Patrick Kaminski, Meltem Odabas, Jaehyuk Park, Michelle M. Martel, Carrie B. Oser, Patricia R. Freeman, Yong-Yeol Ahn, Jeffery C. Talbert

Psychology Faculty Publications

This paper examines network prominence in a co-prescription network as an indicator of opioid doctor shopping (i.e., fraudulent solicitation of opioids from multiple prescribers). Using longitudinal data from a large commercially insured population, we construct a network where a tie between patients is weighted by the number of shared opioid prescribers. Given prior research suggesting that doctor shopping may be a social process, we hypothesize that active doctor shoppers will occupy central structural positions in this network. We show that network prominence, operationalized using PageRank, is associated with more opioid prescriptions, higher predicted risk for dangerous morphine dosage, opioid overdose, …

Socioemotional Selectivity And Psychological Health In Amyotrophic Lateral Sclerosis Patients And Caregivers: A Longitudinal, Dyadic Analysis, Suzanne C. Segerstrom, Edward J. Kasarskis, David W. Fardo, Philip M. Westgate

Psychology Faculty Publications

Objective: Socioemotional selectivity theory predicts that as the end of life approaches, goals and resources that provide immediate, hedonic reward become more important than those that provide delayed rewards. This study tested whether these goal domains differentially affected psychological health in the context of marital dyads in which one partner had been diagnosed with amyotrophic lateral sclerosis (ALS), a life-limiting disease.

Design: ALS patients (N = 102) being treated in three multidisciplinary clinics and their spouses (N = 100) reported their loneliness, financial worry and psychological health every 3 months for up to 18 months.

Main …

Digital Information Technology Use And Patient Preferences For Internet-Based Health Education Modalities: Cross-Sectional Survey Study Of Middle-Aged And Older Adults With Chronic Health Conditions, Nancy P. Gordon, Elizabeth L. Crouch

Faculty Publications

Background: Health information, patient education, and self-management (health information and advice, HIA) tools are increasingly being made available to adults with chronic health conditions through internet-based health and mobile health (mHealth) digital information technologies. However, there is limited information about patient preferences for using specific types of health information and advice resources and how preferences and usage differ by age group and education.

Objective: The objective of this study was to examine how use of digital information technologies and preferred methods for obtaining health information and advice varies by age group and education among middle-aged and older adults with chronic …

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 …

Residential Settings And Healthcare Use Of The Rural "Oldest-Old" Medicare Population, Nathan Paluso Mph, Zachariah T. Croll Mph, Deborah Thayer Mba, Jean A. Talbot Phd, Mph, Andrew F. Coburn Phd

Long Term Services and Supports

The aging of the baby boom generation is projected to dramatically increase the population aged 65 and older in the coming decades. In particular, those aged 85 and older (the ‘oldest old’) are expanding at a faster rate than any other age group and by 2050 are expected to make up 4.5 percent of the population, compared to 1.9 percent in 2012. Faster growth in the percentage of older people (65+) in rural than in urban areas is likely to challenge the healthcare and long term services and supports (LTSS) capacity in many rural communities.

This study used Medicare Current …

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 …

Effects Of Long-Term Participation In Tennis On Cognitive Function In Elderly Individuals, Scott Culpin

Theses: Doctorates and Masters

Many studies have reported the relationship between exercise and cognition with conflicting results. This may be due to differences in intervention durations, session lengths, intensities, and type of exercise. It has been suggested that exercises requiring greater cognitive demand such as football, basketball and racquet sports, are protective against cognitive decline, compared to less cognitively demanding exercises such as swimming, cycling and running, however, research concerning exercise types are currently limited. The present study tested the hypothesis that elderly individuals who had been regularly playing tennis more than 10 years, would have greater cognitive function than those who had been …

Influence Of Dietary Salt Knowledge, Perceptions, And Beliefs On Consumption Choices After Stroke In Uganda, Martin N. Kaddumukasa, Elly Katabira, Martha Sajatovic, Svetlana Pundik, Mark Kaddumukasa, Larry B. Goldstein

Neurology Faculty Publications

Background

Previous research on Uganda's poststroke population revealed that their level of dietary salt knowledge did not lead to healthier consumption choices.

Purpose

Identify barriers and motivators for healthy dietary behaviors and evaluate the understanding of widely accepted salt regulation mechanisms among poststroke patients in Uganda.

Methods

Convergent parallel mixed methods triangulation design comprised a cross-sectional survey (n = 81) and 8 focus group discussions with 7-10 poststroke participants in each group. We assessed participant characteristics and obtained insights into their salt consumption attitudes, perceptions, and knowledge. Qualitative responses were analyzed using an inductive approach with thematic analytic procedures. Relationships …

Pro-Angiogenesis Therapy And Aging: A Mini-Review, Charles T. Ambrose

Microbiology, Immunology, and Molecular Genetics Faculty Publications

Apart from major illnesses and chronic afflictions, the elderly experience lesser ailments, such as muscle weakness, cold intolerance, and transient memory lapses. Physical signs in the aged include wrinkled skin and the slow healing of skin abrasions. These ailments and signs are grouped together because they may be due in part to an age-linked, waning microcirculation. A reduced capillary density (CD) throughout the body of aged people and animals has been reported in over 40 papers. The reduced CD is due in turn to declining levels of angiogenic growth factors (AGFs) throughout the body during old age, as documented in …

Impact Of Home Visit Capacity On Genetic Association Studies Of Late-Onset Alzheimer's Disease, David W. Fardo, Laura E. Gibbons, Shubhabrata Mukherjee, M. Maria Glymour, Wayne Mccormick, Susan M. Mccurry, James D. Bowen, Eric B. Larson, Paul K. Crane

Biostatistics Faculty Publications

INTRODUCTION—Findings for genetic correlates of late-onset Alzheimer's disease (LOAD) in studies that rely solely on clinic visits may differ from those with capacity to follow participants unable to attend clinic visits.

METHODS—We evaluated previously identified LOAD-risk single nucleotide variants in the prospective Adult Changes in Thought study, comparing hazard ratios (HRs) estimated using the full data set of both in-home and clinic visits (n = 1697) to HRs estimated using only data that were obtained from clinic visits (n = 1308). Models were adjusted for age, sex, principal components to account for ancestry, and additional health indicators.

RESULTS …

Exploring Overlaps Between The Genomic And Environmental Determinants Of Lvh And Stroke: A Multicenter Study In West Africa, Abiodun M. Adeoye, Bruce Ovbiagele, Philip Kolo, Lambert Appiah, Akinyemi Aje, Oladimeji Adebayo, Fred Sarfo, Joshua Akinyemi, Gregory Adekunle, Francis Agyekum, Vincent Shidali, Okechukwu Ogah, Dan Lackland, Mulugeta Gebregziabher, Donna K. Arnett, Hemant K. Tiwari, Rufus Akinyemi, Ojo Olakanmi Olagoke, Ayodipupo Sikiru Oguntade, Taiwo Olunuga, Kelechi Uwanruochi, Carolyn Jenkins, Patrick Adadey, Henry Iheonye, Lukman Owolabi, Reginald Obiako, Samuel Akinjopo, Kevin Armstrong, Albert Akpalu, Adekunle Fakunle

Epidemiology and Environmental Health Faculty Publications

Background

Whether left ventricular hypertrophy (LVH) is determined by similar genomic and environmental risk factors with stroke, or is simply an intermediate stroke marker, is unknown.

Objectives

We present a research plan and preliminary findings to explore the overlap in the genomic and environmental determinants of LVH and stroke among Africans participating in the SIREN (Stroke Investigative Research and Education Network) study.

Methods

SIREN is a transnational, multicenter study involving acute stroke patients and age-, ethnicity-, and sex-matched control subjects recruited from 9 sites in Ghana and Nigeria. Genomic and environmental risk factors and other relevant phenotypes for stroke and …

Csf Protein Changes Associated With Hippocampal Sclerosis Risk Gene Variants Highlight Impact Of Grn/Pgrn, David W. Fardo, Yuriko Katsumata, John S. K. Kauwe, Yuetiva Deming, Oscar Harari, Carlos Cruchaga, Alzheimer’S Disease Neuroimaging Initiative, Peter T. Nelson

Sanders-Brown Center on Aging Faculty Publications

Objective—Hippocampal sclerosis of aging (HS-Aging) is a common cause of dementia in older adults. We tested the variability in cerebrospinal fluid (CSF) proteins associated with previously identified HS-Aging risk single nucleotide polymorphisms (SNPs).

Methods—Alzheimer’s Disease Neuroimaging Initiative cohort (ADNI; n=237) data, combining both multiplexed proteomics CSF and genotype data, were used to assess the association between CSF analytes and risk SNPs in four genes (SNPs): GRN (rs5848), TMEM106B (rs1990622), ABCC9 (rs704180), and KCNMB2 (rs9637454). For controls, non-HS-Aging SNPs in APOE (rs429358/rs7412) and MAPT (rs8070723) were also analyzed against Aβ1-42 and total tau CSF analytes.

Results—The GRN risk …

Adverse Events And Treatment Discontinuations Of Antimuscarinics For The Treatment Of Overactive Bladder In Older Adults: A Systematic Review And Meta-Analysis, Scott Martin Vouri, Clark D. Kebodeaux, Paul M. Stranges, Besu F. Teshome

Pharmacy Practice and Science Faculty Publications

Introduction

Antimuscarinics should be used with caution in older adults with overactive bladder (OAB) due to anticholinergic adverse events (AEs). Systematic reviews and meta-analyses (SRMAs) have analyzed safety-related outcomes but have not specified risk in the elderly, the population at highest risk for AEs. The aim of this review is to explore and evaluate AEs and treatment discontinuations in adults 65 or older taking antimuscarinics for OAB.

Methods

Keywords were searched in MEDLINE, EMBASE, SCOPUS, and Cochrane Central Register for Controlled Trials. Randomized controlled trials (RCTs) along with sub-analyses and pooled analyses that compared antimuscarinics to placebo or another antimuscarinic …

Cytomegalovirus Serostatus, Inflammation, And Antibody Response To Influenza Vaccination In Older Adults: The Moderating Effect Of Beta Blockade, Rebecca G. Reed, Richard N. Greenberg, Suzanne C. Segerstrom

Psychology Faculty Publications

Cytomegalovirus (CMV) has been implicated as a factor in immunosenescence, including poor antibody response to vaccination and higher immune activation and inflammation. Some people may be more or less vulnerable to the negative effects of CMV. The present investigation tested the effects of beta-blocker use and chronological age on the associations between CMV and immunity in adults aged 60–91 (N=98; 69% CMV seropositive) who were administered the trivalent influenza vaccine for up to 5 years. Peak antibody response, corrected for baseline, and spring (persistent) antibody response, corrected for peak, were assessed, as well as beta-2 microglobulin (β2μ) and interleukin-6 (IL-6). …

Neighborhood Environment And Falls Among Community-Dwelling Older Adults, Emily Nicklett, Matthew Lohman, Matthew Smith

Dartmouth Scholarship

Falls present a major challenge to active aging, but the relationship between neighborhood factors and falls is poorly understood. This study examined the relationship between fall events and neighborhood factors, including neighborhood social cohesion (sense of belonging, trust, friendliness, and helpfulness) and physical environment (vandalism/graffiti, rubbish, vacant/deserted houses, and perceived safety walking home at night).

The Use Of Physical Restraints In Long-Term Care In Spain: A Multi-Center Cross-Sectional Study, Gabriel J. Estévez-Guerra, Emilio Fariña-López, Eduardo Núñez-González, Manuel Gandoy-Crego, Fernando Calvo-Francés, Elizabeth Capezuti

Publications and Research

Background: Physical restraint is a procedure used frequently in long-term care. It is a controversial practice because its use is associated with numerous complications and also affects freedom and individual autonomy. The objective of this study was to examine the use of physical restraint of long-term care residents with the ability to move voluntarily.

Methods: We conducted a cross-sectional observational and correlational multi-center study. Nine centers agreed to participate. Of the 1,200 people present at the time of data collection, those without voluntary movement or in the facility for less than a month were excluded. Thus, the final sample was …

Mental Health Treatment Seeking Patterns And Preferences Of Appalachian Women With Depression, Claire Snell-Rood, Emily Hauenstein, Carl G. Leukefeld, Frances Feltner, Amber Marcum, Nancy E. Schoenberg

Behavioral Science Faculty Publications

This qualitative study explored social-cultural factors that shape treatment seeking behaviors among depressed rural, low-income women in Appalachia—a region with high rates of depression and a shortage of mental health services. Recent research shows that increasingly rural women are receiving some form of treatment and identifying their symptoms as depression. Using purposive sampling, investigators recruited 28 depressed low-income women living in Appalachian Kentucky and conducted semistructured interviews on participants’ perceptions of depression and treatment seeking. Even in this sample of women with diverse treatment behaviors (half reported current treatment), participants expressed ambivalence about treatment and its potential to promote recovery. …

Intimate Partner Violence And Women's Cancer Quality Of Life, Ann L. Coker, Diane R. Follingstad, Lisandra S. Garcia, Heather M. Bush

CRVAW Faculty Journal Articles

Purpose

Because intimate partner violence (IPV) may disproportionately impact women’s quality of life (QOL) when undergoing cancer treatment, women experiencing IPV were hypothesized to have (a) more symptoms of depression or stress and (b) lower QOL as measured with the Functional Assessment of Cancer Therapy (FACT-B) and Functional Assessment of Chronic Illness Therapy—Spiritual Well-being (FACIT-SP) Scales relative to those never experiencing IPV.

Methods

Women, aged 18–79, who were included in one of two state cancer registries from 2009 to 2015 with a recent incident, primary, invasive biopsy-confirmed cancer diagnosis were recruited and asked to complete a phone interview, within 12 …

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 …

Usage Of Swi (Susceptibility Weighted Imaging) Acquired At 7t For Qualitative Evaluation Of Temporal Lobe Epilepsy Patients With Histopathological And Clinical Correlation: An Initial Pilot Study., Benjamin Y M Kwan, Fateme Salehi, Pavlo Ohorodnyk, Donald H Lee, Jorge G Burneo, Seyed M Mirsattari, David Steven, Robert Hammond, Terry M Peters, Ali R Khan

Brain and Mind Institute Researchers' Publications

OBJECTIVES: Ultra high field MRI at 7T is able to provide much improved spatial and contrast resolution which may aid in the diagnosis of hippocampal abnormalities. This paper presents a preliminary experience on qualitative evaluation of 7T MRI in temporal lobe epilepsy patients with a focus on comparison to histopathology.

METHODS: 7T ultra high field MRI data, using T1-weighted, T2*-weighted and susceptibility-weighted images (SWI), were acquired for 13 patients with drug resistant temporal lobe epilepsy (TLE) during evaluation for potential epilepsy surgery. Qualitative evaluation of the imaging data for scan quality and presence of hippocampal and temporal lobe abnormalities were …

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 …