Browsing by Subject "Quality of Life"
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Item Adapting Behavioral Interventions to Better Support Alzheimer's Disease and Lewy Body Dementia Care Partners Based on Their Unique Needs and Differences(2021-12-16) Kew, Chung Lin; Krumwiede, Kimberly Hoggatt; Juengst, Shannon B.; Osborne, Candice L.; Tzen, Yi-Ting; Kelley, Brendan; Smith, Scott AlanCare partners of individuals with Alzheimer's disease (AD) and Lewy body dementia (LBD) are typically family members or friends. They often experience physical and psychological strain associated with caregiving. Hence, the long-term goal is to improve the physical and psychological health and well-being of care partners of individuals with AD and LBD through the provision of a self-management intervention, problem-solving training (PST). To achieve this goal, the following gap in literature has to be addressed. Firstly, although AD and LBD have different symptom presentations, little is known about challenges specific to LBD care partners and how these challenges differ between AD and LBD care partners. Next, research to date has yet to identify specific care partner characteristics that could impact uptake and outcomes of behavioral interventions that promote self-management, like PST. Therefore, this (ORBIT model Phase I) study aims to (1) identify differences between the challenges faced by care partners of AD and LBD patients to support the transferability of care partner interventions to all care partners, and (2) identify whether PST needs to be adapted (i.e., optimized) to account for unique individual differences that may affect how much a person benefits from the intervention. Results of both these aims will provide a concrete understanding of both AD and LBD care partner experiences and specific care partner characteristics and intervention components that could impact how we can better support care partners.Item Analysis of Association Between Keloids and Other Medical Conditions(2016-01-19) Rutherford, Audrey; Glass, Donald A., IIBACKGROUND: Keloids are an exaggerated response to cutaneous wound healing. Keloids negatively affect patients' quality of life and there is no 100% effective treatment to prevent occurrence or recurrence. Previous results from the Genetic Causes of Keloid Formation Study (GCKFS), an IRB-approved keloid registry, showed that hypertension and obesity may be more prevalent in African-Americans with keloids versus the general African-American population. This suggests that there are possible common mechanisms between keloids and these comorbidities. OBJECTIVE: The aim was to assess for an association between hypertension and/or obesity with keloid-affected patients, and to evaluate various subcategories of keloid-affected patients. METHODS: Seventy-nine GCKFS participants with diagnosed keloids were matched to controls from the Dallas Heart Study (at a 1 GCKFS:7 DHS ratio). Participants were categorized into hypertensive and obese cohorts using objective recorded measurements and calculations made using Fisher's exact test (significance P < 0.05). Sub-analyses were assessed among the GCKFS cohort using number of keloids, location, and number of anatomic sites involved. RESULTS: There were 504 total keloids distributed among six designated anatomical sites (ears, neck up, extremities, trunk, abdomen, other). Thirty (37.97%) GCKFS participants were hypertensive, and thirty-six (45.57%) were obese. The GCKFS participants showed an association with hypertension (p=0.045) but not with obesity (p=0.903). On subanalyses, keloid-affected individuals under age 30 had a higher prevalence of hypertension (p=0.042) and participants with multiple keloid sites had a higher prevalence of obesity (p=0.024). CONCLUSIONS: The results are consistent with hypertensive associations with keloids found in the literature. Data collection will continue by increasing the GCKFS cohort to determine if the trending data will reach statistical significance. Further research is encouraged to delve into the mechanisms between the association between hypertension and/or obesity and keloids.Item Assessing Self-Care Perception in Patients Living with Type 2 Diabetes and Their Physicians(2021-05-01T05:00:00.000Z) Balakrishnan, Naveen Kishore; Day, Philip; Kale, Neelima; Schneider, DavidBACKGROUND: Type 2 diabetes mellitus (T2D) is chronic illness affecting millions in the United States. Patients living with T2D require highly individualized care and significant patient effort. This effort is comprised of the patient's self-care with regards to medication, diet, lifestyle, and mental health. Self-efficacy is a patient's ability to feel agency over their illness and therefore feel able to maintain self-care. Previous literature suggests that improving a patient's self-efficacy through various behavioral health interventions may improve a patient's ability to manage their T2D. Additionally, interventions on self-efficacy are thought to work regardless of health literacy level and might be a generalizable intervention. However, while validated surveys assessing patient diabetes distress, quality-of-life, social determinants of health, adverse childhood events, and more exist, no literature was found attempting to understand a patient's perspective on their self-care, and by extension, their self-efficacy. Under the premise that consistent beliefs between patient and physician regarding self-care are necessary to make meaningful plans promoting self-care and self-efficacy, the authors developed the term self-care perception consistency to assess relationship between patient and physician perceptions of a patient's self-care. OBJECTIVE: The objective is to assess the consistency between patient and physician perceptions of patient self-care through a biopsychosocial and structural/social determinants of health lens. METHODS: This study uses a cross-sectional, quantitative data set obtained by the Research Residency Network of Texas (RRNeT) through a 71-item survey study. This survey was completed across 12 Family Medicine residencies in Texas and included individuals between 18-75 who were living with T2D. Responses ranged from short free response to Likert-scale based questions and covered topics such as demographics, social determinants of health, patient self-care, diabetes distress, quality-of-life, adverse childhood events, and more. The physicians of each patient were asked to complete a shorter 10-item survey with broader analogous questions to the patient survey. This data was collected through RedCap and analyzed through RStudio. RESULTS: The term self-care perception consistency was coined to describe the relationship between the patient's and physician's perception of the patient's self-care. Self-care perception consistency was found to be lacking 31.2% of the time. Only HgA1c (p<0.01) was inversely correlated with self-care perception consistency in both the univariate and multivariate analyses of demographic factors and social determinants of health. Additional analysis was completed to assess the relationship of HgA1c control, patient diabetes distress, patient quality-of-life, and the physician survey with self-care perception consistency. Self-care perception consistent and inconsistent groups were found to have significantly different HgA1c control distributions (p < 0.01) in the subset of patients that rated their self-care positively, but no significant difference was found in the group that rated their self-care negatively. Patient self-care ratings were best correlated with their diabetes distress (p<0.01) and HgA1c (p<0.01) while physician ratings of patient self-care were best correlated with their perception of HgA1c, perception of patient diabetes distress, perception of patient quality-of-life, and perception of patient social connectedness (p<0.01 for all). Notably, trending diabetes distress, quality-of-life, the physician survey, and social determinants of health across patient self-care ratings in self-care perception consistent versus inconsistent groups revealed that only the physician survey showed opposite trends across the consistent and inconsistent groups. CONCLUSION: Self-care perception consistency was found to be lacking 31.2% of the time. Notably, HgA1c is correlated with patient and physician perceptions of patient self-care (p<0.01 for both); however, in instances of patient-physician self-care perception inconsistency, HgA1c is not correlated with patient self-care perception. Instead, diabetes distress remains predictive of patient self-care rating in all instances (p<0.01). Patient-physician self-care perception inconsistency is also associated with inconsistency in patient and physician perceptions of the patient's diabetes distress. As diabetes distress remains consistently correlated with patient self-care rating, using the validated diabetes distress survey-17 with an additional question regarding self-care may help physicians better understand patients and therefore target appropriate education and psychosocial interventions.Item Cardiovascular Risk Indicators and Health-Related Quality of Life in Women Veterans with PTSD(2018-07-26) Anderson, Elizabeth Hallen; Surís, Alina; Fu, Qi; Pai, Anushka; Shivakumar, Geetha; Smith, JuliaPosttraumatic stress disorder (PTSD) is one of the most prevalent disorders among women veterans treated at the Veterans Health Administration and is associated with a wide range of negative physical health outcomes, including the development of cardiovascular disease. In addition, PTSD has a negative impact on an individual's subjective perception of the health-related quality of his or her own life. The majority of studies examining the complex relationship between PTSD and health have utilized primarily male populations. To better understand the impact of PTSD on laboratory-based and self-reported measures of health in women veterans, this study used multivariate analyses of variance to compare cardiovascular risk indicators (resting heart rate, blood pressure, and muscle sympathetic nerve activity) and physical and mental health-related quality of life (SF-36) in a sample of women veterans with PTSD to a sample of nonveteran women without PTSD. In addition, hierarchical multiple regression analyses were used to examine the relationship between PTSD symptom criteria groups and sympathetic nervous system activity indicators and physical and mental health-related quality of life. Results revealed no significant differences between women veterans with PTSD and healthy controls in regards to cardiovascular risk indicators, however women veterans with PTSD reported significantly worse physical and mental health related quality of life. Contrary to expectations, the hyperarousal symptom criteria group was not found to be a significant and unique predictor of sympathetic nervous system activity indicators nor health related quality of life. However, clinician-rated non-hyperarousal PTSD symptom severity was found to be a significant and unique predictor of physical health-related quality of life. Further analysis demonstrated that, of the four PTSD symptom criteria groups, only clinician-rated re-experiencing symptom severity approached being a significant predictor of worse physical health-related quality of life. Since re-experiencing symptoms appear to be an important mechanism by which women veterans make judgments about their physical health, clinically targeting such symptoms in PTSD interventions may result in improved health-related quality of life. Given the relatively young state of research in women veterans with PTSD, it is important to confirm and build on previous research findings for this unique population.Item Characterizing Morphea Subsets Using a Multi-Center, Prospective, Cross-Sectional Analysis of Morphea in Adults and Children(2020-05-01T05:00:00.000Z) Prasad, Smriti; Jacobe, Heidi; Haley, Robert; Chong, Benjamin F.BACKGROUND: There are few prospective studies in morphea. Most that exist focus exclusively on adults or children, or are insufficiently powered. Others are retrospective, which have limitations in understanding subsets. As a result, there is limited understanding of the demographic and clinical features of morphea, particularly of the less frequent subtypes. There is also little known about the differences between adults and children. OBJECTIVE: To determine the clinical and demographic features of the inception cohort of two prospectively-collected datasets and to determine novel latent disease phenotypes among this cohort. METHODS: This is a cross sectional analysis of initial visits of the Morphea in Adults and Children (MAC) and the National Registry of Childhood-Onset Scleroderma (NRCOS) cohorts, two prospectively collected databases that collect demographic, physical exam and clinical data. We performed traditional univariate analyses as well as multivariate analyses, include a principal component analysis (PCA) of certain variables. RESULTS: Of the total 944 participants, 500 (53%) had pediatric onset morphea, and 444 (47%) had adult onset morphea. Whites (76%) and females (78%) comprised the majority of participants. The median age at onset was 16 years overall. Five factors were extracted from the PCA based on the inflection point in the scree plot (CF1-5). CF2 described a clustering of patients with depression and high comorbidities of headaches, joint pain, muscle pain, and fatigue. Based on this, we did a post-hoc analysis on the quality of life measures collected in adults, which was derived from the SKINDEX 29+3. CONCLUSION: We've described the clinical and demographic features in the largest cohort of morphea patients to date. Here we describe subsets of patients that have been previously described, such as a group of patients with depression and somatic symptoms.Item Comparing PROMIS-29 to SF-12 in Evaluating Quality of Life in Patients with Diabetes-Related Foot Disease(2020-05-01T05:00:00.000Z) Ahn, Junho; Wukich, Dane K.; Raspovic, Katherine M.; Liu, George T.BACKGROUND: With the increasing prevalence of diabetes mellitus (DM), DM-related foot disease (DFD) is an underappreciated problem with far-reaching consequences. Understanding the impact of DFD on clinical outcomes and patient-reported quality of life (QOL) is an important step for improving patient care. Historically, the 12-item Short Form (SF-12) has been commonly used to evaluate QOL in this population. However, with recent innovations in survey methods such as in the Patient-Reported Outcomes Measurement Information System (PROMIS) and computer adaptive testing (CAT), these emerging surveys should be evaluated and compared to the legacy surveys for effectiveness in measuring patient QOL. OBJECTIVE: The aim of this research was to describe patient-reported quality of life in those with and without DFD using the SF-12 and the PROMIS-29. METHODS: All patients included in the study were treated in a foot and ankle clinic in a tertiary care hospital and completed both the SF-12 and the PROMIS surveys. Patients who did not complete both surveys during the same clinic visit were not included. Patient-reported QOL was compared statistically between those with and without DFD. RESULTS: One-hundred fifty patients were included in the study. Seventy-two (48%) had DFD. Between groups, those with DFD were younger, more often male, and had poorer DM-related parameters. Patient responses on the SF-12 and PROMIS surveys correlated significantly on most parameters including SF-12 mental component summary (MCS-12) and PROMIS Depression and Anxiety subscales as well as SF-12 physical component summary (PCS-12) and PROMIS physical function. However, when evaluating ceiling and floor effects, the PROMIS survey was found to have a longer ceiling effect in patients with DFD than the SF-12. CONCLUSION: The PROMIS survey correlates well with the legacy standard, SF-12, for patient-reported QOL in those with and without DFD. In addition, the PROMIS survey may be less sensitive to ceiling effects correlated with the effects of DFD on physical and mental health, potentially being a more effective tool than SF-12 for long-term monitoring of patient QOL. In addition, the technologic advance of CAT in surveys, the patient burden of repeated survey evaluation may be diminished.Item Cross-Cultural Comparison of Parental Perspectives of Health-Related Quality of Life in Children with Cochlear Implants(2012-11-28) Kumar, Roshini Ruth; Silver, Cheryl H.; Warner-Czyz, Andrea D.; Tobey, Emily A.BACKGROUND: Assessing health-related quality of life (HRQoL) is a useful way to quantify benefits that cochlear implants (CI) provide children with hearing loss. Since children often are too young or lack communication skills to convey their HRQoL, parents serve as a reliable proxy. This study examines parent report of HRQoL (categorized in eight domains) and demographic variables in children with CI. Lastly, this study compares parent HRQoL ratings in the United States (US) to parent ratings in the Netherlands, Finland and the United Kingdom (UK). SUBJECTS: Parents of 33 children with CIs participated in the US component of this study. METHOD: An analysis of variance was used to measure differences among HRQoL domains. Correlations between HRQoL and demographic variables, and correlations among HRQoL domains were assessed using Spearman and point bi-serial correlations. Cross-cultural differences in HRQoL domain scores were computed using one sample t-tests. RESULTS: In this US sample, education and effects of CI domains were rated least positively. Cross-culturally, US parents rated HRQoL more positively than parents in the Netherlands, generally less positively than parents in Finland and aligned most closely with parents in the UK. DISCUSSION: Limited access to CI-related accommodations and varying parent expectations likely explain the differences in low ratings of education and effects of implantation in the US, as well as the differences seen cross-culturally. Providing useful CI accommodations at school and preparing parents for realistic outcomes could greatly benefit children with CI and their families.Item Demographics and Quality of Life in Unfunded Patients Receiving Regular Emergent Dialysis(2014-02-04) Hogan, Andrew; Rigdon, Daniel; Suter, RobertINTRODUCTION: Patients with End Stage Renal Disease (ESRD) must undergo hemodialysis several times per week for renal dysfunction. Chronic dialysis drastically affects the lifestyles of ESRD patients, as it is time-consuming and uncomfortable. A high number of unfunded ESRD patients present to the Emergency Department (ED) at Parkland Hospital for dialysis. These patients accounted for over 7300 ED visits in 2009. Providing emergent dialysis via the ED has been shown to be more costly than providing scheduled dialysis. To date, all psychometric analyses of demographics and quality of life in chronic dialysis patients focus on insured patients in traditional dialysis centers. This study attempts to acquire and analyze such data on the emergent dialysis population at Parkland Hospital. Data will ultimately be compared to control patients from the Parkland system. METHODS: A demographic survey developed at UT Southwestern and the established "Kidney Disease Quality Of Life (KDQOL(TM)) Instrument" were presented to ESRD patients seeking dialysis in the Parkland ED. A comprehensive list of 165 suitable patients was obtained from Parkland Nephrology. With a goal of 80% recruitment of those identified, patients were recruited upon presentation 24 hours a day, 7 days a week for a 4-week period beginning on July 8, 2013. In total, 55 data points from each patient were aggregated. RESULTS: Of 101 chronic dialysis patients approached during the initial 4 weeks, 88 completed the survey. Although 39% of listed patients were not surveyed by the end of the 4 weeks, raw data collection has recently been completed. Demographic data reveal a predominantly male, Hispanic, middle-aged, undocumented, and uninsured ESRD patient population seeking dialysis in the Parkland ED. The KDQOL data indicate a majority of surveyed patients rate their current health negatively, while only 9% do so positively. Additional data quantifying the impact of chronic dialysis on patient lifestyles await analysis. DISCUSSION: The demographic data reveal that 68% of the chronic dialysis patients thus surveyed have lived in the USA for more than 5 years, yet only 15% received a diagnosis requiring dialysis over 5 years ago. This finding seems to contradict the currently accepted idea that the need for dialysis is the primary motivating factor bringing most of these patients to the USA. Quality of life data remains to be compared between the unfunded emergent population and the Nephrology clinic population. Descriptors for the emergent patients are expected to be more negative, or at best equivalent to those for the scheduled patients. Considering the higher cost of emergent dialysis, the results of this comparison are expected to support an argument for providing scheduled dialysis for unfunded ESRD patients.Item Dignity in later life (The Daniel W. Foster, M.D., Visiting Lectureship in Medical Ethics)(2023-12-12) Jecker, Nancy S.Some argue dignity is a useless concept that bioethics can do without. Against this view, I show dignity is a central concern for bioethics, particularly for older people. Dignity's importance during later life is part of a broader view I call the life stage relativity of values. It holds that different values emerge as central at different periods of our lives. During early life, caring, trust, and nurturing figure prominently due to vulnerabilities that characterize infancy and childhood. By adulthood, greater physical and emotional independence leads to autonomy and self-reliance taking center stage. During later life, heightened risk for chronic disease and disability makes keeping dignity intact a critical concern. Across the lifespan, the highest value for an individual relates to their life stage circumstances. Ignoring this can lead to life stage bias, especially midlife bias, which occurs when we apply values central during midlife to all life stages.Item Effects of Surgical Intervention on Parent Reported Quality of Life in Children and Adolescents with Craniofacial Conditions(2014-12-22) Perrin, Lauren Kacey; Heppner, Celia; Wetherington, Crista E.; Kane, AlexBACKGROUND: This study compared parent-reported quality of life pre- and post-surgery in children with craniofacial conditions. Many psychosocial difficulties associated with craniofacial conditions have been identified in the literature; however, research has not yet looked specifically at parent reports of patients’ quality of life and psychosocial functioning before and after surgery. OBJECTIVE: The aim of this study was to examine changes in parent-reported quality of life over time in relation to surgical intervention in children and adolescents with craniofacial conditions. DESIGN: A retrospective chart review was conducted of patients seen in a multidisciplinary craniofacial team clinic. Data were examined for two time points: initial visit and follow-up visit to team clinic. Participants included in the chart review were patients seen twice by psychology in team clinic between March 2011 and August 2014, with PedsQL™ ratings from parents at both time points. Patients ages 0 to 23 years were eligible for inclusion in the sample. Data collected from patient charts included demographic information, medical and surgical history, and scores from the PedsQL™ TM 4.0 Generic Core Scales. RESULTS: Parenting stress reported at follow-up had a significant relationship with parent reported quality of life reported at follow-up for this sample; however, surgery was not a significant predictor of outcome quality of life. DISCUSSION: Current parenting stress and initial reports of quality of life may be important variables for clinicians to consider when working with the craniofacial population. Surgery should be investigated further in terms of its impact on quality of life in relation to other psychosocial variables.Item Embracing electronic tools to improve patient outcomes(2017-08-18) Beg, MuhammadItem The Exploratory Study of Consumers' Experience of Using Food Pantries and Their Self-Sufficiency and Quality of Life(2013-09-10) Sims, Candice M.; Chiu, Chung-Yi; Brewer-Mixon, Karen; McClintock, Shawn MichaelBACKGROUND: Food insecurity and consumers' chronic dependence on social welfare designed for emergency use has raised concern for food banks and food pantry directors who are interested in consumers' experience of using food pantries and their self-sufficiency during the period of relying on food pantries. In addition to knowing the demographic and socioeconomic status of consumers, there is still a need to understand consumers' satisfaction with food pantry services, experience of using a food pantry, self-sufficiency, motivation, and quality of life. These subjects were addressed in the present study. SUBJECTS: From 12 randomly selected food pantries in the greater Dallas area that are serviced by the North Texas Food Bank, 151consumers were surveyed, which included 112 females and 39 males. There were 51 Caucasians, 70 African Americans, 28 Hispanics and 2 other races/ethnicities. The average age of consumers surveyed was 44.45 (Range= 20-65, SD = 20.65). Additionally, a total of 28 surveys were completed by food pantry directors. The total sample included 17 female and 11 male directors. The average age of directors surveyed was 55.65 (Range= 27-69, SD= 12.82). Only 1 director (3.6%) reported being of Hispanic/Latino or Spanish origin. Twenty-three directors (82.1%) were Caucasian, three (10.7%) were African American, and one (3.6%) reported being American Indian or Alaska Native. METHODS: A descriptive research design was used. SPSS 19.0 was used to analyze the data. The following scales were used: Consumer Demographic Questionnaire, Food Pantry Services Questionnaire, Service Satisfaction Questionnaire, Food Pantry Use Reason Questionnaire, Service Perception and Emotion Questionnaire, Dependence Questionnaire, Stages of Change in Employment, Work Intention Scale, Life Crisis Solution Questionnaire, Kessler Psychological Distress Scale, and the SF-12. RESULTS: Around 40% (n=58) of consumers had a high school diploma and less than 11th grade education. Forty-seven consumers (31.1%) were currently unemployed and 40 (26.5%) unable to work. Thirty-nine consumers' income came from SSI (25.8%) and 23 consumers' (15.2%) income came from SSDI. Eighty-seven consumers' (57.6%) annual household income was under $11,999. Overall, consumers were satisfied with food pantry services and felt appreciated and relieved when receiving services and food. There was no significant difference of service satisfaction evaluation between directors and consumers. Their motivation of returning to work and being self-sufficient was moderate. Consumers' quality of life was significantly lower than the general population. However, there was a very significant difference in the way consumers and directors rated food pantry use reason importance (t(53.85)= -9.65, p = .000), with consumers' overall ratings being significantly lower than directors. DISCUSSION: Studies have shown that demographic factors such as household income, race, gender, marital status, employment and accessibility of social welfare are mediating factors for food insecurity and poverty. All of these factors contribute to increased reliance on food pantry services. The responses from consumers regarding their dependence on food pantries has supported the fact that consumers need assistance in finding good paying jobs, education in learning to budget, and classes where job skills can be learned. Additionally, in order to best serve food pantry consumers and to meet the ultimate goal of encouraging self-sufficiency, food pantry directors must understand their consumers' quality of life and the factors that contribute to it. IMPLICATIONS: The ability of the food bank's top-down approach to promote self-sufficiency has been questioned. Developing community initiatives that promote self-sufficiency through community development brings accountability and pride back into the community. At the center of this facilitation is the much-needed strong leadership of the directors, serving as life coaches to consumers.Item Factors Influencing Quality of Life in Parkinson's Disease(2015-08-31) Chansard, Matthieu; Lacritz, Laura H.; Ringe, Wendy; McClintock, Shawn MichaelBACKGROUND: Parkinson’s Disease (PD) is a progressive neurodegenerative disease, that encompasses a broad range of motor and non-motor symptoms, each of which has the potential to negatively impact health-related quality of life. Depression, disease duration, and level of disability have been found to significantly influence quality of life in PD. However, there is a paucity of research examining the combined influences of depression, PD motor symptom severity and cognition on overall HRQoL, as well as various domains of HRQoL, in a PD population. SUBJECTS: This study used data collected from 124 participants with PD, aged 50 to 85, who were enrolled in a larger study, and gave informed consent for the parent study, with no knowledge of the current study. Inclusion criteria consisted of a PD diagnosis and a response to levodopa treatment for at least 30 days. Participants meeting DSM-IV-TR criteria for Axis I disorders other than MDD were excluded. METHOD: The current study utilized linear and multiple regression analyses to explore the relationships between HRQoL and depression severity, PD motor symptom severity and global cognitive ability. HRQoL was measured by the Parkinson’s Disease Questionnaire – 39 Item, a PD specific disease questionnaire designed to assess HRQoL in a variety of domains. Measures included the Quick Inventory of Depressive Symptomatology-Clinician Version, the United Parkinson’s Disease Rating Scale Part III, selected disease characteristics, and a battery of cognitive tests. RESULTS: Depression severity (QIDS-C16) and PD motor symptom severity (UPDRS) and global cognitive ability accounted for approximately 30% of the variance in PDQ-39 Single Index scores. Depression severity and motor symptom severity were the most significant predictors of HRQoL (PDQ-39). The multiple regression analysis results aligned closely with separate, linear regression analyses designed to control for the redundancy in the independent and dependent variables, which showed that depression severity accounted for 18.7% of the variance in HRQoL, motor severity accounted for 12%, and that global cognitive ability accounted for 3.8%. Depression severity accounted for the greatest amount of variance in all domain scores comprising the PDQ-39 except for Mobility and Activities of Daily Living, of which PD motor symptom severity accounted for the largest amount of variance. Depression severity was significantly correlated with all PDQ-39 domains, (rs=0.22 to 0.48), while PD symptom severity was significantly correlated (rs=0.23 to 0.51) with Mobility, ADL, Cognition, Communication and Bodily Discomfort domains. Global cognitive functioning did not significantly predict overall HRQoL but did significantly influence the Communication domain. The PDQ-39 Single Index score was significantly correlated with measures visual learning and memory (BVMT-R) and processing speed (Trail Making Test Part A and Part B, and Symbol Search). Of all the significant Pearson correlations, Symbol Search scaled scores had the strongest correlation (r=0.29). In an ANCOVA analysis using QIDS-C16 scores as a covariate, verbal learning and memory (RAVLT) achieved statistical significance. When controlling for depression severity and age, no significant differences in HRQoL were found between individuals classified as bradykinetic/rigid motor subtype and those classified as tremor dominant motor subtype. DISCUSSION: The primary aim of the study was to examine the relative influence of depressive symptoms, PD motor symptoms and cognition on HRQoL in individuals with PD. Both depression severity and motor symptom severity significantly influenced HRQoL, while global cognitive ability did not. The influence of depression severity in the sample is impressive, given the low prevalence and severity of depression present. This suggests that although depression severity may be subclinical, early identification and management of these symptoms may positively influence HRQoL. The most frequently reported depressive symptoms included difficulties staying asleep, sad mood and low energy, which indicate that targeting these specific symptoms, even when subclinical, holds potential for improving the HRQoL of individuals with PD. In exploring the relationship between cognition and HRQoL in PD further, Pearson correlational analyses indicated that HRQoL was significantly correlated with measures of visual and verbal learning and memory, working memory and processing speed, even though a global cognition screening measure was not predictive of overall HRQoL. In summary, the collective findings from this study support the influence of motor severity and even subclinical depression on HRQoL in PD, suggesting that interventions designed to improve mood and the capacity to complete activities of daily living may positively impact quality of life.Item Factors Involved in Health-Related Quality of Life in Children with Immune Thrombocytopenia: A Study from the Dallas ITP Cohort(2013-06-01) Flores, Adolfo; Neunert, Cindy E.; Klaassen, Robert J.; Adix, Leah; Winborn, Anna; Buchanan, George R.; Flores, Adolfo; Buchanan, George R.BACKGROUND: Medication costs and side effects, bleeding severity, and activity restrictions may all play a role in parental/child disease burden in childhood ITP. However, the precise factors involved in health-related quality of life (HRQoL) changes reported by these patients and their families are largely unknown. Our aim was to prospectively explore relationships between clinical/demographic factors that may negatively impact HRQoL in childhood ITP during the first year following diagnosis. METHODS: This was a prospective, single-institution study of newly diagnosed children with ITP ages 12 weeks to < 18 years. Serial evaluations of HRQoL were performed using the recently validated Kid’s ITP Tools (KIT) at enrollment and 1 week, 6 months and 12 months following diagnosis. All visits included a CBC and bleeding severity grade. Demographic and baseline characteristics were summarized using descriptive statistics, with Kruskal-Wallis and Mann-Whitney tests performed when necessary. Multiple linear regression analysis was used to identify significant associations of patient/parent HRQoL at each study visit. RESULTS: A total of 163 patients with newly diagnosed ITP were evaluated since study commencement, with 96 patients meeting all eligibility criteria. Mean parental disease burden was higher at enrollment (i.e. lower KIT score) compared to child-self and proxy HRQoL scores. HRQoL improved in parent, child and proxy reports between diagnosis and 12 month follow-up, but only parent and proxy reports were statistically significant, with changes in scores between the 1 week and 6 month visits displaying the greatest degree of improvement. There was a considerably higher disease burden present at enrollment for children and parents of children who received drug therapy at diagnosis compared to those who were managed with close observation. Multiple linear regression analysis failed to identify associations of parental disease burden other than drug treatment at enrollment and sustained skin bleeding at 12 months. Alternatively, fatigue, drug treatment, and activity restrictions remained key variables of diminished HRQoL for child and proxy reports. CONCLUSIONS: The findings in this study suggest that in spite of concerns and frustrations with bleeding symptoms, drug treatment, fatigue and activity restrictions, HRQoL in children with ITP is not exceedingly low at diagnosis and shows modest improvement with time.Item Health Related Quality of Life of Transgender Adolescents Undergoing Hormonal Transition or Elective Pubertal Delay(2018-04-03) Moore, Antoinette Marie; Gimpel, Nora; Lau, May; McGregor, TamaraBACKGROUND: Research concerning the health and well-being of gender non-conforming and transgender adolescents following pubertal suppression and cross-sex hormone administration has grown dramatically in recent years, providing further evidence supporting a gender-affirming approach to this vulnerable population. Improvement in psychological functioning has been demonstrated in both transgender male and transgender female adolescents following these mentioned medical interventions. Further research is necessary to demonstrate whether a gender-affirming medical approach improves health-related quality of life, which includes not only psychological functioning but physical and social functioning as well. The gender-affirming medical approach also relies heavily on self-reported observations from adolescents, which has come under scrutiny by critics who believe adolescents are incapable of making semi-permanent and permanent gender affirming medical decisions. More research is needed to compare adolescent observations of their quality of life to the observations of their parents/guardians as an index of reliability of reported behaviors and feelings. This will further inform how medical and mental health professionals weigh adolescent and guardian reports in the ongoing debate regarding the appropriate age for cross-sex hormonal transition in gender non-conforming and transgender adolescents. OBJECTIVE: Following medical intervention (pubertal suppression and later cross-sex hormone initiation), adolescents will report a significant increase in their health-related quality of life from their self-reported baseline prior to intervention. METHODS: Adolescents experiencing gender dysphoria were recruited to participate in this study beginning at their intake into GENECIS, a center located in Dallas, Texas, specializing in interdisciplinary gender affirming care of this population. At intake, adolescents agreeable to participate in this study included 108 trans-males (natal female, gender identity male) and 71 trans-females (natal male, gender identity female) as well as their caregivers. All were administered the PedsQL, a validated instrument that quantifies perceived general self-reported and parent-reported quality of life in several core domains. This tool, first developed to assess baseline risk, health status, and outcomes of pediatric cancer patients has since been validated in multiple chronic health conditions. The PedsQL was administered again to adolescents and parents which at one-year follow up, which at the time included 71 adolescents and 90 parents. Paired t-test was performed on baseline and one year follow up PedsQL scores for this group, comparing the gender affirming care model to the gender affirming care model plus medical intervention (cross-sex hormones or pubertal delay, n=56). The PedsQL Family Impact tool was also administered to parents of transgender adolescents at initial intake and one year follow up (n=94). This tool assists in analyzing the health related quality of life of the parents and family when considering the stresses caused by raising a transgender adolescent. RESULTS: The initial assessment provided results regarding baseline QL of transgender adolescents. Out of 179 adolescents, 160 identified as White, 5 African American, 1 American Indian/Alaskan Native, 4 Asian, and 9 Unknown. Ethnically, 15 identifed as Hispanic or Latino, with 164 identifying as Non-Hispanic or Latino. Domain means for all adolescents were as follows, with a score of 100 as a perfect score: Physical functioning 77.98, Emotional functioning 56.92, Social functioning 70.81, School functioning 63.88, Psychosocial health summary score 64.12, and Total Score 68.95. Trans males (n=108) had the following domain means: Physical functioning 74.26, Emotional functioning 53.01, Social functioning 68.01, School functioning 60.46, Psychosocial health 60.89, Total score 65.53. Trans females (n=71) had the following domain means: Physical functioning 83.65, Emotional functioning 62.87, Social functioning 75.07, School functioning 69.08, Psychosocial health 69.03, Total score 74.15. Patients who completed both an initial PedsQL assessment and one year reassessment (n=71) provided data for a Paired T Test (95% CI) with the following results: Physical functioning Initial 80.76, Year 1 78.97, p=.304; Emotional functioning Initial 55.58, Year 1 64.03 p=.004*; Social functioning initial 72.04, Year 1 77.82, p=.006*; School functioning Initial 65.07, Year 1 67.68 p=.396; Psychosocial 64.62, Year 1 70.49, p=.004*; Total score Initial 70.25, Year 1 73.41, p=.065. Of this paired data, Trans Males (n=45) demonstrated the following results: Physical functioning Initial 76.42, Year 1 76.40, p=.99; Emotional functioning Initial 52.67, Year 1 61.02 p=.01*; Social functioning Initial 70.78, Year 1 75.00, p=.12; School functioning Initial 63.44, Year 1 63.56 p=.97; Psychosocial Initial 62.89, Year 1 67.18, p=.06; Total score Initial 67.58, Year 1 70.36, p=.16. Trans Females (n=26) demonstrated the following results: Physical functioning Initial 88.27, Year 1 83.42, p=.17; Emotional functioning Initial 60.62, Year 1 69.23 p=.14; Social functioning Initial 74.23, Year 1 82.69, p=.01*; School functioning Initial 67.88, Year 1 74.81 p=.17; Psychosocial Initial 67.62, Year 1 76.23, p=.03*; Total score Initial 74.88, Year 1 78.69, p=.24. Patients who completed both an initial PedsQL assessment, began cross-sex hormones or elective pubertal delay following initial assessment, and completed a one year reassessment (n=56) provided data for a Paired T Test (95% CI) with the following results: Physical functioning Initial 78.56, Year 1 79.84, p=.53; Emotional functioning Initial 55.27, Year 1 66.71 p=.0004*; Social functioning Initial 69.46, Year 1 77.21, p=.003*; School functioning Initial 63.39, Year 1 70.55 p=.024*; Psychosocial Initial 63.18, Year 1 71.39, p=.0001*; Total score Initial 68.55, Year 1 74.30, p=.002*. Of this paired data, Trans Males (n=38) demonstrated the following results: Physical functioning Initial 73.92, Year 1 77.29, p=.17; Emotional functioning Initial 50.53, Year 1 64.50 p=.00003*; Social functioning Initial 69.34, Year 1 76.29, p=.04*; School functioning Initial 62.11, Year 1 68.55 p=.09; Psychosocial Initial 61.34, Year 1 69.76, p=.0009*; Total score Initial 65.71, Year 1 72.39, p=.002*. Trans Females (n=18) demonstrated the following results: Physical functioning Initial 88.39, Year 1 85.22, p=.38; Emotional functioning Initial 65.28, Year 1 71.39 p=.39; Social functioning initial 69.72, Year 1 79.17, p=.02*; School functioning Initial 66.11, Year 1 75.00 p=.12; Psychosocial Initial 67.06, Year 1 74.83, p=.06; Total score Initial 74.57, Year 1 78.33, p=.26. Parents who also completed an initial PedsQL assessment (parent proxy) and a one year reassessment (n=90) provided data for a Paired T Test (95% CI) with the following results: Physical functioning Initial 78.74, Year 1 81.47 p=.179; Emotional functioning Initial 59.33, Year 1 62.81 p=.08; Social functioning initial 71.23, Year 1 76.78, p=.02*; School functioning Initial 69.18, Year 1 72.36 p=.28; Psychosocial Initial 66.84, Year 1 71.02, p=.03*; Total score Initial 70.96, Year 1 74.59, p=04*. Regarding scores on the PedsQL Family Impact assessment, a Paired T Test (n=94) had the following results: Physical functioning Initial 77.95, Year 1 79.61 p=.49; Emotional functioning Initial 65.59, Year 1 71.01 p=.02*; Social functioning initial 75.31, Year 1 80.18, p=.07; Cognitive Functioning Initial 78.78, Year 1 80.43 p=.44; Communication Health Summary Initial 63.57, Year 1 68.44, p=.047*; Worry Initial 49.34, Year 1 58.55 p=.001*; Daily Activities Initial 74.76, Year 1 80.73, p=.09; Family Relationships Initial 69.73, Year 1 73.56, p= .001*; Parent HRQL Summary Score Initial 74.63, Year 1 77.82, p= .001*; Family Functioning Summary 71.68, Year 1 76.31, p=.178; Total Score Initial 69.70, Year 1 74.70, p=.12. CONCLUSION: By focusing on functionality as demonstrated by the PedsQL, this research has demonstrated that transgender adolescents achieve a significant improvement across multiple QOL domains via medical care rooted in a gender-affirming approach, but adolescents achieved the greatest gains in QOL scores when medical therapy in the form of cross-sex hormones or pubertal suppression was introduced. Trans males had greater improvements in QOL scoring, possibly explained the larger sample size of trans males in the GENECIS clinic, the faster onset of desired side effects of testosterone administration versus estrogen, and the larger percentage of trans males on cross-sex hormones in versus pubertal blockers alone. The similarities in how adolescents reported their quality of life compared to the reported observations of their guardian suggest parents of adolescents at GENECIS can accurately estimate the impact gender dysphoria has on their child's life, and adolescent self-reporting is as accurate to parental proxy. This potentially has great importance in regard to informed decision making, particularly age at which cross-sex hormones are administered. The PedsQL Family Impact instrument provided strong data suggesting that not only do adolescents benefit from receiving care from a gender affirming center (as demonstrated by the PedsQL tool) but that the family unit and the parent also achieve an improved quality of life. Based on these findings, we conclude that this early research on QOL in transgender adolescents continues to support administration of cross-sex hormones and pubertal blockade and consider lowering the age of transition below sixteen years of age as improvement in QOL of the adolescent and family unit is demonstrable and desirable.Item Health-Related Quality of Life in Morphea(2015-03-20) Klimas, Natasha; Jacobe, Heidi; Bernstein, Ira; Cayce, RachaelOBJECTIVE: Little is known about health-related quality of life (HRQOL) of patients with morphea (localized scleroderma). We determined the impact of morphea on HRQOL and clinical and demographic correlates of HRQOL. METHODS: Cross sectional survey of Morphea in Adults and Children (MAC) cohort. RESULTS: Morphea impairs HRQOL. Patients were particularly affected with respect to emotional well-being and concerns that the disease will progress to their internal organs. Patients with morphea had worse skin-specific HRQOL than those with other skin diseases, including non-melanoma skin cancer, vitiligo, and alopecia (lowest P <.0001). The morphea population was found to have significantly worse global HRQOL scores than the general U.S. population for all subscales (all P ≤.004) with the exception of bodily pain. Comorbidity (r =.35-.51, P ≤ .0029 -.0001) and symptoms of pruritus (r =.38 -.64, P ≤.001-.0001) and pain (r =.46-.74, P <.0001) were associated with impairment in multiple domains of skin-specific and global HRQOL. Physician-based measures of disease severity correlated with patient-reported HRQOL. CONCLUSION: Patients with morphea have negative impact on HRQOL particularly if symptoms or concerns regarding internal manifestations are present. Providers should be aware of this when evaluating and treating patients.Item The Impact of Morphea on Quality of Life Over Time(2014-02-04) Grewal, Simer; Grabell, Daniel; Jacobe, HeidiBACKGROUND: Morphea is an inflammatory disorder that has subsequent clinical manifestations of sclerosis and atrophy of the dermis and underlying tissue. Resulting cosmetic disfigurement or functional impairments are likely to persist even after the transition to inactive disease. The impact of Morphea on a patient's self-reported health-related quality of life (HRQOL) is not well described in medical literature. OBJECTIVE: To determine the impact of specific clinical, treatment, and demographic variables on self-reported QoL over time of the Morphea in adults and children (MAC) cohort. As a secondary objective, to correlate physician measures to patient reported QoL measures in order to determine which aspects of morphea are important to patients that might not be addressed in physician based outcomes. METHODS: Adult patients of the MAC cohort with ≥ 2 visits with a recorded HRQOL measure were studied. Self-reported HRQOL was examined via three previously validated questionnaires. Each included patient had at least 2 Dermatology Life Quality Indexes (DLQI). In addition, the Skindex-29+3 with an added morphea specific subscale and the Short Form 36 were included when available. In order to capture physician assessment of disease, Physician Global Assessment of disease (PGA), Modified Rodnan Skin Score (MRSS) and Localized Scleroderma Skin Severity Index (LOSSI) with its damage correlate LOSDI were employed. RESULTS: A total of 110 adult patients with 307 visits were included in these analyses. The QoL for patients with morphea is shown to be worse than the general population, with mean scores below 50 for SF-36 PCS and MCS scores. Though there was a marked decrease in activity, as measured by a 68 percent change in both PGA-A and LOSSI, QoL measures only had slight improvement with an 11.34 percent change over the same course of time. The damage measures (PGA-D, LOSDI) had an average 6.66 percent improvement. Limitations: All patients were seen at one referral center, which resulted in a skew towards more severe forms of morphea. The sample size, though larger than anything to date, limits complexity of statistical analysis. CONCLUSION: A decrease in disease severity does not mean an improvement in QoL. Lesions often don't disappear even as they transition to inactivity but rather leave frequent permanent sequalae. This indicates a need for further studies examining treatment of residual cosmetic and functional sequalae.Item Impact of Psychological Variables on Health Status Over Time in Adolescents With Inflammatory Bowel Disease(2014-07-25) Martinez, Dailyn; Donewar, Crista W.; Iteld, Lily; Patel, Ashish; Reed, Gabriela; Stewart, Sunita M.The relationship between psychological factors and health outcomes over time in adolescents with Inflammatory Bowel Disease (IBD) is complex. The pediatric IBD literature with respect to these relationships is limited, yet the broader IBD and health psychology literatures offer clues as to the negative impact of alexithymia, depressive symptoms, and stress on health status and health care utilization. Studies have revealed higher rates of alexithymia in adult IBD populations, which in turn has been associated with worse emotional functioning and lower quality of life (QOL). Depression has been associated with worse disease status in children with IBD, but this relationship requires additional exploration, as it remains equivocal. In the adult IBD literature, stress has been associated with disease relapse and avoidant coping. Our study sought to understand the relationship between these psychological factors, health status as determined by disease severity, and health care utilization (i.e., outpatient GI visits, ED visits, nights hospitalized, and time to medical care) over the course of 3 months and 12 months after baseline. Our study revealed correlations between disease severity and age, race, and ethnicity. However, no associations emerged between disease severity and our psychological factors of interest. Conversely, significant associations emerged between our health care utilization variables and psychological factors. For instance, stress was predictive of nights hospitalized over the course of 3 months post-baseline while both alexithymia and depressive symptoms emerged as significantly predictive of number of nights hospitalized over the course of 12 months. Additionally, increasing depressive symptoms were associated with shorter time to hospitalization post-baseline. These results highlight the complex and important relationship between psychological factors and markers of health outcome, and the importance of continuing research efforts to elucidate the mechanisms underlying these relationships. Ultimately, clearer understanding of these dynamics has important implications for pediatric IBD patients and the providers who treat them.Item The Impact of Specialized Family Camps on Quality of Life and Hope in Families Who Are Coping with Pediatric Cancer(2012-08-15) Cook, Ellen Claire; Wetherington, Crista E.; Germann, Julie; Chiu, Chung-Yi; Leavey, PatrickBACKGROUND: Over the past several decades, specialized summer camps for children with cancer have been shown to have various positive results in those who attend. Family camps have become increasingly popular over the past few years, but the efficacy of family camps for specialized populations has not been well established through research. In addition, few studies have addressed the benefits of the camp experience over time, especially in regard to its impact on quality of life. The aim of this study was to learn whether or not the family camp experience increases the quality of life of families with a child with cancer, and whether or not these changes are maintained after the camp experience ends. In addition, this study examined the impact of camp on levels of hope, and analyzed how hope and social support contribute to the quality of life of those who attend camp. SUBJECTS: A total of 66 families participated in this study. Participants include parents, cancer patients or survivors, and siblings. Thirty-nine families who attended a specialized weekend camp participated in the study, and a control sample of 27 families who did not attend camp was recruited as well. METHOD: Questionnaire data was collected at three time points: pre-camp, post-camp, and a three-month follow up. Measures included a demographic questionnaire, age appropriate versions of the PedsQLTM 4.0 Generic Core Scales, the PedsQLTM 2.0 PedsQLTM 2.0 Family Impact Module, the Hope Scale (Adult and Child versions), the Young Children’s Hope Scale, and a brief follow-up questionnaire. RESULTS: Quality of life did not significantly increase in the camp group in the overall family unit. However, quality of life was shown to be significantly higher in the camp group than the control group at the beginning and end of camp. Siblings demonstrated a significant increase in quality of life when examined separately from the family unit. No significant changes in hope or differences in hope between groups were observed. DISCUSSION: Though this study did not demonstrate the efficacy of family camp as predicted, it did show that individual family members are impacted by camp in different ways. Camp has been show to benefit siblings in particular, which is indicated by improvement in quality of life, hope, and social support in this population. This study also shows that different results may be found using different measures of the same variables.Item The Influence of Demographic Factors, Resilience, and Other Psychological Factors in Predicting Caregiver Burden in Trauma ICU Populations(2020-12-01T06:00:00.000Z) Patel, Sarita; Warren, Ann Marie; Bennett, Monica; Robinson, Richard C.; Howe-Martin, Laura; Foreman, Michael; Petrey, LauraAlthough only a small number of studies specifically focus on caregivers of ICU patients, findings suggest that these caregivers can experience a substantial burden. Although negative psychological states, including depression and posttraumatic stress disorder (PTSD), are gaining attention in the literature following the injury of a family member, less attention has been paid to the role that potentially protective psychological factors, such as resilience, may have in one's response to injury or critical illness in a family member. The purpose of this study is to examine the role of specific demographics factors and resilience in predicting caregiver burden, depression, and PTSD symptoms in caregivers of trauma patients. Eligible individuals were identified based on their family member's medical diagnosis through the trauma service admission list at Baylor University Medical Center (BUMC), a Level I trauma center and part of the Baylor Scott & White Healthcare system. Participants (aged 18-82, N=91, 73.6% female) completed brief self-report measures assessing depression, PTSD and resilience at baseline, and completed brief self-report measures assessing depression, PTSD, and caregiver burden at three-month follow-up. Regression analyses were used to determine the association between resilience and each outcome (caregiver burden, depression, and PTSD). Results illustrated significant associations between resilience and depression and PTSD separately. Exploratory analyses were conducted to determine the role of demographic factors in predicting caregiver burden, depression, and PTSD over time. A series of linear and logistic regressions were conducted to evaluate the intersectionality of the demographic factors and each outcome. Findings suggest that higher levels of resilience may significantly be associated with lower rates of depression and PTSD. Additionally, the interaction of several demographic factors may significantly be associated with higher rates of depression and PTSD. Current study findings suggest that certain demographic factors are associated with higher levels of depression and PTSD in caregivers. Although further exploration is warranted before drawing firm conclusions, this novel information may be used to direct future research, educate caregivers, clinicians and researchers, and inform the development of interventions specific to this population.
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