Nancy Downing

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Psychometric properties and responsiveness of the Turkish version of the Diabetes Treatment Satisfaction Questionnaire (s) on a sample of diabetics of three consecutive monitoring periods

Acta Diabetologica, 2009

The aim of this study is to test the psychometric properties and the responsiveness of the origin... more The aim of this study is to test the psychometric properties and the responsiveness of the original (status) version of Turkish DTSQ. The study sample included 88 patients with diabetes mellitus who were evaluated in three consecutive time points. The first data collection time point was during their initial contact to the clinic, and the two following (3rd month and 6th month) were during the monitoring visits to the Celal Bayar University Endocrinology Department in 2007. After the adaptation of the DTSQ to Turkish language by following standard procedures, this instrument was applied to the patients along with WBQ-12 and World Health Organization Quality of Life Measure (WHO-QOL-Bref). The reliability of the DTSQ was evaluated by running internal consistency analysis (Cronbach Alpha) and item analysis. Construct validity of the instrument was evaluated by various tests such as Principal Components analysis, Confirmatory Factor Analysis, Concurrent validity and ''Known Groups'' comparisons. Finally the sensitivity (responsiveness to change) of the DTSQ scores to the changes of the metabolic conditions were assessed. 50.0% of the participants were male with a mean age of 51.1 ± 11.4 (min 22, max 78). Majority of them had type 2 diabetes (86.4%) and 72.7% of these patients had at least one co-morbid chronic conditions. While 53.4% of the patients had been treated by insulin the remaining 46.6% had been taking oral anti-diabetic agents. The results revealed satisfactory alpha values for DTSQ (a [ 0.70). All of the three metabolic measures (i.e., FBG, PBG, and HbA1c) had significant correlations with the DTSQ scores. The criterion and construct validity of the scale were found to be very satisfactory. The Turkish version of the DTSQ showed acceptable fit indices (RMSEA = 0.03, CFI [ 0.90) with the original (hypothetic) construct. Almost all of the sub-dimensions of the WBQ and WHOQOL were correlated with the DTSQ as expected, indicating a good concurrent validity. DTSQ status version was found to be a reliable and valid instrument for the assessment of treatment satisfaction in Turkish diabetes mellitus patients.

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A Psychoeducational Group for Adult Children of Alcoholics

Journal of Counseling & Development, 1987

The authors describe a campus‐based psychoeducational support group for adult children of alcohol... more The authors describe a campus‐based psychoeducational support group for adult children of alcoholics. Group goals are outlined, recruitment procedures identified, and sessions described and evaluated. This successful group format could easily be adapted to other settings and age groups (e.g., high schools, community mental health centers).

Factors Associated With End-of-Life Planning in Huntington Disease

by Nancy Downing and Stacey Barton

The American journal of hospice & palliative care, 2017

Knowledge of one's gene status for adult onset conditions provides opportunity to make advanc... more Knowledge of one's gene status for adult onset conditions provides opportunity to make advance end-of-life (EOL) plans. The purposes of these analyses were to (1) determine the prevalence of EOL plans, including advance directives (ADs) among persons across 3 stages of Huntington disease (HD) and (2) examine factors associated with having ADs in this sample. Data are from 503 participants in the HD Quality of Life study. Participants completed an online health-related quality-of-life survey that included questions regarding EOL planning and self-reported HD symptoms. Frequencies were calculated for EOL planning by the HD stage. Bivariate analysis and logistic regression were used to identify variables associated with having ADs. A total of 38.2% of participants stated they had ADs and fewer than half had other EOL plans. Being older, increased HD stage, more years of education, lower anxiety, more swallowing symptoms, and higher meaning and purpose were associated with having AD...

Increasing Access to Forensic Nursing Services in Rural and Underserved Areas of Texas

Journal of Forensic Nursing

Couples' Attributions of Functional Changes in Prodromal Huntington Disease

International Association of Forensic Nurses President's Message

Journal of Forensic Nursing

Forensic Nursing Research

Journal of Forensic Nursing

Supplemental digital content is available in the text. ABSTRACT As a growing profession, forensic... more Supplemental digital content is available in the text. ABSTRACT As a growing profession, forensic nursing requires research to establish best practice guidelines leading to evidence-based practice. In addition, forensic nursing quality improvement projects are necessary to evaluate and improve practices and policies. The purpose of this article is to provide step-by-step guidelines on research and quality improvement projects to encourage all forensic nurses to actively contribute to and utilize research in practice. Research will expand our forensic nursing science and knowledge base. Ultimately, forensic nursing research will benefit our patients and communities by establishing enhanced, evidence-based care.

Couples' illness representation and coping procedures in prodromal Huntington disease

Huntington disease (HD) is a degenerative neurological disease that leads to severe impairment in... more Huntington disease (HD) is a degenerative neurological disease that leads to severe impairment in cognitive, behavioral, and motor function and premature death. Persons who test positive for the HD gene expansion know they will develop the disease, typically in mid life. Research indicates changes are detectable several years before onset of distinctive motor symptoms. The period of time between a positive test result and diagnosis has thus been called prodromal HD (prHD). Little is known whether persons with prHD or their companions notice changes, or how they cope with them. The purpose of this thesis was to use the Common Sense Model to explore and describe illness representations in persons with prHD and their companions in three papers. The first paper was a preliminary analysis of interview data from eight persons with prHD and seven companions. Results indicated participants noticed and made attributions for changes in work function but were unsure whether some changes were related to HD. Results were preliminary because participants were not asked to make attributions and the sample size was small. In the next two papers, 23 couples were interviewed. The purpose of the second paper was to explore illness representations in persons with prHD and their companions and evaluate the usefulness of the CSM in anticipated illness. Results supported preliminary findings: Participants noticed changes and made attributions; again, most did not attribute them to HD. Participants also used and evaluated coping strategies. Other elements of the CSM were partially supported. The third paper used mixed methods to explore coping in persons with prHD and companions. Participants were asked open-ended questions about how they coped with changes and were verbally administered the Brief COPE scale. Participants used active coping, acceptance, planning, and social support and rarely used denial or substance abuse. Persons with prHD used more coping strategies than companions. Three major To the brave and generous people from families affected by Huntington disease who are willing to participate in research iii ACKNOWLDGEMENTS This research project was supported in part by a grant awarded to Dr. Jane Paulsen by NINDS NS40068 and CHDI, Inc. There is no financial relationship with either of these organizations. In addition, The University of Iowa College of Nursing Parent, Child, Family Area provided support for participant compensation through its indirect cost recovery funds. Anne Leserman, MSW, LISW, Huntington Disease Center Coordinator with the PREDICT-HD study, provided valuable assistance in identifying potential participants for this study and shared her expertise on this population.

format_quoteFamily members lack clarity on attributing changes in prodromal HD to the disease, expressing a need for more information from healthcare providers.format_quote

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Understanding the need for assistance with survey completion in people with Huntington disease

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, Mar 1, 2018

In Huntington disease (HD), motor, cognitive, and psychiatric changes can have a detrimental impa... more In Huntington disease (HD), motor, cognitive, and psychiatric changes can have a detrimental impact on health-related quality of life (HRQOL). The purpose of this paper is to describe the extent and type of assistance needed to complete online HRQOL surveys, and the impact of assistance on HRQOL scores. A patient-reported outcome measurement system was developed for HD-specific HRQOL. Individuals across the prodromal and diagnosed disease severity spectrum (n = 532) completed surveys by computer, and reported the amount and type of assistance they received. Some participants (n = 56; 10.5%) did not complete all surveys; this group had larger proportions with late stage disease, racial/ethnic minority status, low education and single marital status, and poorer motor, independence and cognitive function compared to those who completed all surveys (n = 476). Overall, 72% of individuals did not receive assistance, 11% received computer assistance only, and 17% received assistance answer...

Relationships Among Apathy, Health-Related Quality of Life, and Function in Huntington's Disease

The Journal of neuropsychiatry and clinical neurosciences, Jan 21, 2018

Up to 90% of individuals with Huntington's disease (HD)-a progressive, inherited neurodegener... more 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 with the HD mutation (prodromal, N=193; early-stage manifest, N=186; late-stage manifest, N=108). Multiple linear regression models were used to examine which outcomes best predicted clinician-...

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Evaluating cognition in individuals with Huntington disease: Neuro-QoL cognitive functioning measures

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, Mar 8, 2017

Cognitive functioning impacts health-related quality of life (HRQOL) for individuals with Hunting... more Cognitive functioning impacts health-related quality of life (HRQOL) for individuals with Huntington disease (HD). The Neuro-QoL includes two patient-reported outcome (PRO) measures of cognition-Executive Function (EF) and General Concerns (GC). These measures have not previously been validated for use in HD. The purpose of this analysis is to evaluate the reliability and validity of the Neuro-QoL Cognitive Function measures for use in HD. Five hundred ten individuals with prodromal or manifest HD completed the Neuro-QoL Cognition measures, two other PRO measures of HRQOL (WHODAS 2.0 and EQ5D), and a depression measure (PROMIS Depression). Measures of functioning The Total Functional Capacity and behavior (Problem Behaviors Assessment) were completed by clinician interview. Objective measures of cognition were obtained using clinician-administered Symbol Digit Modalities Test and the Stroop Test (Word, Color, and Interference). Self-rated, clinician-rated, and objective composite sc...

format_quoteNeuro-QoL EF showed high sensitivity (85.2%) and moderate specificity (55.4%), aiding in distinguishing prodromal from manifest HD.format_quote

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Forensic Nursing State of the Science: Research and Practice Opportunities

Journal of forensic nursing, Jan 3, 2018

The International Association of Forensic Nurses (IAFN) is the only nursing organization advancin... more The International Association of Forensic Nurses (IAFN) is the only nursing organization advancing the forensic nursing specialty. The organization seeks to advance the profession, and one mechanism for doing so is development of a research agenda. The purpose of this action-based research study was to aid in the development of a forensic nursing research agenda. The study was carried out in two integral stages: (a) focus groups with IAFN members attending the annual conference and (b) reviewing posted IAFN member listserv material. The findings of this study identified similar gaps of other nursing specialties experiencing "growing pains," including role confusion and variation in educational preparation. Findings from this study will inform development of the IAFN 5-year research agenda to advance forensic nursing science and evidence-based practice.

Factors Associated With End-of-Life Planning in Huntington Disease

The American journal of hospice & palliative care, 2017

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Phenotype Characterization of HD Intermediate Alleles in PREDICT-HD

Journal of Huntington's Disease, 2016

has served on an advisory board for Lundbeck, LLC and has a consulting agreement with ProPhase, L... more

format_quoteNo significant differences between IA and NA groups were found, indicating minimal subtle motor or cognitive impairments in intermediate allele carriers.format_quote

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Is There an Association of Physical Activity with Brain Volume, Behavior, and Day-to-day Functioning? A Cross Sectional Design in Prodromal and Early Huntington Disease

PLoS currents, Jan 17, 2016

Huntington disease (HD) is a genetic neurodegenerative disease leading to progressive motor, cogn... more Huntington disease (HD) is a genetic neurodegenerative disease leading to progressive motor, cognitive, and behavioral decline. Subtle changes in these domains are detectable up to 15 years before a definitive motor diagnosis is made. This period, called prodromal HD, provides an opportunity to examine lifestyle behaviors that may impact disease progression. Physical activity relates to decreased rates of brain atrophy and improved cognitive and day-to-day functioning in Alzheimer disease and healthy aging populations. Previous research has yielded mixed results regarding the impact of physical activity on disease progression in HD and paid little attention to the prodromal phase. We conducted analyses of associations among current physical activity level, current and retrospective rate of change for hippocampus and striatum volume, and cognitive, motor, and day-to-day functioning variables. Participants were 48 gene-expanded cases with prodromal and early-diagnosed HD and 27 nongen...

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Couples' illness representations and coping procedures in prodromal Huntington disease

A Preliminary Examination of New Measures of Health-related Quality of Life in Huntington Disease

Neurotherapeutics

Developing strategic interventions to reduce cardiovascular disease risk among law enforcement officers: the art and science of data triangulation

AAOHN journal : official journal of the American Association of Occupational Health Nurses, 2008

The purpose of this study was to use data triangulation to inform interventions targeted at reduc... more The purpose of this study was to use data triangulation to inform interventions targeted at reducing morbidity from cardiovascular disease (CVD) and associated risk factors among law enforcement officers. Using the Precede-Proceed Health Promotion Planning Model, survey data (n = 672) and focus group data (n = 8 groups) from the Milwaukee Police Department were analyzed. Narrative transcripts disclosed that law enforcement officers encounter potential barriers and motivators to a healthy lifestyle. Survey results indicated rates of overweight (71.1% vs. 60.8%) and hypertension (27.4% vs. 17.6%) were significantly (p < or = .001) higher among Milwaukee Police Department law enforcement officers than the general population of Wisconsin (n = 2,855). The best predictor of CVD was diabetes (p = .030). Occupational health nurses are uniquely positioned to identify health risks, design appropriate interventions, and advocate for policy changes that improve the health of those employed i...

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Performance of the 12-item WHODAS 2.0 in prodromal Huntington disease

European journal of human genetics : EJHG, Jan 4, 2015

The Diagnostic and Statistical Manual for Mental Disorders, Fifth Edition (DSM-5), recommends the... more The Diagnostic and Statistical Manual for Mental Disorders, Fifth Edition (DSM-5), recommends the World Health Organization Disability Assessment Schedule (WHODAS) 2.0 for routine clinical use. We tested the utility of the 12-item WHODAS 2.0 in prodromal Huntington disease. Using data from 726 participants and 630 companions over a 3-year follow-up, linear mixed models were fitted to test (1) baseline and longitudinal differences by progression group; (2) participant and companion differences within each group; and (3) sensitivity of the 12-item WHODAS in comparison to the 36-item WHODAS and the Total Functional Capacity (TFC) score from the Unified Huntington's Disease Rating Scale. Participants showed baseline group differences whereas companions showed baseline and longitudinal group differences. Companions reported worse functional decline over time than participants as the disease progresses. The 12-item WHODAS detected longitudinal change better than the 36-item WHODAS and...

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Disclosure of incidental genomic findings involving children: are we making progress?

Personalized Medicine, 2013

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