• Differences in Parkinson Disease Presentation and Progression by Sex and Reproductive Health Characteristics

      Abraham, Danielle SuzAnne; Gruber-Baldini, Ann L. (2018)
      Background: Female sex and reproductive health characteristics indicative of higher estrogen exposure are associated with a reduced risk of Parkinson disease (PD). However, it is unclear if those risk factors also act as prognostic factors. Past studies examining PD progression have methodological limitations or have only focused on physician assessed, impairment progression. Objective: To examine differences in physician assessed and patient reported PD presentation and progression by sex and reproductive health characteristics. Methods: Analysis was conducted on PD patients who sought care at the University of Maryland PD and Movement Disorders Center. Bivariate analysis was used to compare patient sociodemographics, clinical characteristics, care patterns, and outcomes by sex and reproductive health characteristics. Multiple models of PD progression were explored; linear mixed-effects models with five year spline intervals were selected to examine patient impairment, disability, and health-related quality of life progression and heterogeneity. Sex and reproductive health characteristic interaction terms were added to the mixed-effects models to examine differences. Results: The final study sample included 914 males, 549 females, and 463 post-menopausal females. Females had less social support, more psychological distress, and worse self-reported (but not physician assessed) disability and health-related quality of life at initial PD visits, compared to males. Progression patterns differed by outcome measure and were heterogeneous. For all outcome measures but one, patients improved in the first year of clinical care at the Center. However, there were minimal differences in PD progression by sex and inconsistent differences by reproductive health characteristics. A mediation analysis demonstrated that managing patient psychological distress had the largest impact on reducing sex differences in self-reported disability and health-related quality of life at initial PD visits. Conclusions: The findings emphasize the difference in patient-reported and physician assessed outcome measures as well as the challenge of prognostic counseling in PD. The improvement seen in the first year of care at the Center highlights the need for specialist referral in PD. Females perceived their disease to be worse than males. To improve this difference, psychological distress interventions and management, particularly targeting females, should be implemented as part of PD clinical care.
    • Effectiveness of practice guidelines for disease modifying therapy in multiple sclerosis within the Veteran's Health Administration

      Culpepper, William; Magder, Laurence S. (2009)
      Background: Multiple Sclerosis (MS) is a chronic, degenerative neurologic disorder and is the most common neurologic disorder in young adults; however, its etiology has yet to be fully elucidated. The efficacy of disease modifying therapy (DMT) has been documented, but compliance is an issue and only one study appears in the literature that specifically assessed the effectiveness of DMT. Objectives: This study had four objectives: 1) enroll a large cohort of veterans with MS into the VHA MS Surveillance Registry (MSSR); 2) assess the representativeness of the MSSR as compared with other published MS cohorts; 3) assess how well DMT practice guidelines are applied across the VHA system; and 4) assess the effectiveness of DMT in the treatment of MS. Methods: A cross-sectional, mail-based survey was administered to a stratified, random sample of 3,905 VHA users with MS. Detailed demographic and clinical data were collected as well as patient-reported outcomes assessing disability and QOL. Results: There were 1,227 respondents (31% response rate) that were enrolled into the VHA MS Surveillance Registry (MMSR). Respondents did not differ from non-respondents or from the larger VHA MS population with regard to demographics or region and the MSSR cohort was very similar in demographic and clinical characteristics when compared with other published MS cohorts. Overall, 86% of eligible patients had tried at least one DMT and 72% were compliant with therapy. In general, a dose-response type of association was found such that low DMT compliance was associated with increased disability, more MS-related symptoms, and poorer physical QOL compared with high DMT-compliance. DMT-use was not associated with the psychological QOL scale. Conclusions: The MSSR provides a representative cohort of veterans with MS that reflects the larger VHA MS population and adequately represents the general MS population as well. The DMT-use rates observed in this study exceeded those in other studies and provide a system-wide assessment that could contribute to the development of a national benchmark criterion. This study is only the second to provide empirical support for the effectiveness of DMT in a "real world" cohort of MS patients and highlights the importance of patient compliance. Additional research is needed regarding the factors associated with compliance to ensure therapeutic benefit in all DMT users.
    • Exploring the Factors that Influence Quality of Life Among Nursing Home Residents

      Adler, Efrat; Resnick, Barbara (2010)
      Background: Optimal quality of life is a universally desired outcome for nursing home residents, their families, and policy makers. To comprehensively evaluate the factors that influence quality of life among NH residents the biopsychosocial ecological (BPSE) model was used. Design: A secondary analysis using baseline data from the Restorative-Care Study was performed. Sample: The sample included 391 NH residents from 12 different NHs. Participants had a mean age of 83.7 years (SD=8.4) and the majority was female (80.3%), white (65.5%), and unmarried (83%). Measures: Measurement included socio-demographic variables (age, race, gender, marital status, length of stay), physical factors (pain, anemia, cognitive status), psychosocial factors (self-efficacy, outcome expectations) , and functional performance (activities of daily living, grip strength, gait and balance and falls). The dependent variable, quality of life, was measured using the Dementia Quality of Life Measure (total score and subscales: positive affect, negative affect, self- esteem, feeling of belonging, sense of aesthetics) and a single item individualized quality of life measure. Data analysis: Model testing was done using structural equation modeling and the Amos statistical program. Seven empirical based hypothesized models were tested (total quality of life score, each subscale, and the individualized single item measure). Results: None of the data fit the models, with each having 𝒳2 /df ratios greater than 3. However, education, gender, efficacy expectations, falls, cognitive status, pain and length of stay were all directly related to at least one of the subscales or total quality of life. The total variance in QOL explained by any of the hypothesized models was less than 10% indicating that additional factors not included in the hypothesized models are needed to optimally explain QOL of nursing home residents. Conclusion: The hypothesized models, developed based on the BPSE model and empirical research did not comprehensively explain the variance in QOL among NH residents. Further research is needed to test factors not included in this study (e.g., other comorbities, nutritional status, interpersonal relationships with staff, and social support) and thereby more comprehensively explain and intervene to optimize quality of life among these individuals.
    • Health-related Quality of Life and Mortality in Incident Heart Failure from the Cardiovascular Health Study (CHS)

      Woltz, Patricia Clark; Friedmann, Erika (2014)
      Heart failure (HF) is a debilitating clinical syndrome and the end stage of many heart diseases. Despite recent advances in treatment, it is a growing problem with a steadily increasing number of deaths annually. Costs of care have been rising and are projected to continue to do so over the next 20 years. Studies report that health related quality of life (HRQL) in HF adds prognostic information beyond that of traditional demographic and clinical risk factors, however findings vary. This research was conducted on data from The Cardiovascular Health Study (CHS), a large, population based cohort study of community dwelling older adults recruited in 2 annual waves (1989-1990; 1992-1993) and followed through 2009. The data were aligned into a data set that began at participant intake and continued with a maximum 20 year follow up (median 13.56) to examine changes in HRQL in participants newly diagnosed with HF. Changes in self-reported health, life satisfaction, depressive symptoms, physical functioning, and perceived social support were evaluated from the annual study visit immediately before to immediately after new HF diagnosis (N=987). In linear mixed models analysis, depressive symptoms (t(3150) = 3.13, p = .003), self-reported health (t(2968) = 4.85, p < .001), and self-reported physical functioning (t(3139) = 3.16, p = .002) deteriorated more in those diagnosed with HF than in an age/gender matched comparison group over a similar period. In Cox proportional hazard regression, changes in self-reported physical functioning in the year of HF diagnosis and self-reported health prior to diagnosis contributed independently to mortality after adjusting for age, gender, and functional status (walk time). Mortality risk increased 9% for every one-point worsening in physical functioning from before to after diagnosis (HR 1.09, 95%CI 1.02, 1.17) and 17% for every one-point worse self-reported health prior to diagnosis (HR 1.17, 95%CI 1.04, 1.33). Missing data introduced potential selection bias. Understanding the contributors to mortality in HF may help develop interventions and assist in the selection of patient centered treatment options. Assessment of HRQL in routine practice is recommended. Further research is needed to improve the sensitivity of HRQL measures to detect change.
    • New treatment targets in heart failure: Patient reported outcome measures and subjective well-being

      Russo, Marguerite M.; Wiegand, Debra J. Lynn-McHale (2015)
      Background: Despite costly advances in heart failure management, heart failure is characterized by pervasive adverse and complex symptoms, functional decline, and poor quality of life. A robust theoretical framework comprehending provider and patient paradigms guided this study seeking new treatment targets to augment existing advanced therapies. Aims: The aim of this study is to examine subjective well-being associations with other patient reported outcome measures, and disease and treatment outcomes, in individuals with heart failure. Methods: This cross sectional, correlational study used data collected from 88 individuals undergoing inpatient heart failure treatment in a large urban academic medical center (50% male, average age 67±6. 9, median duration of heart failure >4 years, mean vEF =32%). Following consent, patients completed a 30 minute interview consisting of valid, reliable ‘patient reported outcome measures’ of subjective well-being, symptom burden, intrusion of illness and treatment in meaningful life pursuits, and health related quality of life. Disease, treatment and social characteristics were abstracted from medical records. Data analyses were conducted using correlation, non parametric statistics and regression models. Results: ‘Patient reported outcome measures’ had good internal reliability (Cronbach’s alpha >.8). Subjective well-being scores detected differences based on age, functional, employment and insurance statuses. Health related quality of life and subjective well-being measures correlated with illness intrusiveness (.53, -.40). The most prevalent symptoms reported (75-97%), were xerostomia, dyspnea, fatigue, pain, worry and sleep disruption. In multiple regression models, illness intrusiveness predicted subjective well-being (R2 change=.29, p≤.01) health related quality of life (R2 change= .24, p≤.01), after controlling for functional and insurance statuses. Conclusion: ‘Patient reported outcome measures’ including subjective well-being scales contribute unique findings to inform individualized heart failure treatment. New heart failure treatment targets identified in this sample include multidimensional symptom management, functional support, prognostication and advance care planning, all components of primary palliative care.
    • Patient and spouse health related quality of life after radical retropublic prostatectomy

      Marschke, Penny LaRue Schultz; Morton, Patricia Gonce, 1952- (2000)
      The purpose of this study was to describe longitudinally, the health-related and disease-specific quality of life of patients who underwent a radical retropubic prostatectomy as treatment for localized prostate cancer and to describe the health-related quality of life of the wife of the radical retropubic prostatectomy patient. Pre-operatively, and at 6-weeks and 3-months post-operatively, 67 married couples completed and returned the SF-12, the Quality of Life Index - Cancer Version, and the Cantril Self-Anchoring Scale. The UCLA - Prostate Cancer Index (disease-specific instrument) was completed by the patient, pre-operatively and at 3-months post-operatively. Another instrument entitled Shared Visions, developed by the investigator, was administered at both post-op data points to assess the couples' recuperative concerns and suggested strategies for recovery. Repeated measures analysis of variance was performed to determine the differences in the patients' health-related quality of life and disease-specific quality of life, as well as the wives' health-related quality of life. Patient age and pathological stage of the prostate cancer were investigated to assess their impact on the patients' disease-specific quality of life. Finally, the relationship between the scores of the Quality of Life Index - Cancer Version and the scores on the SF-12 were investigated using the Pearson Product Moment Correlation. The patients' scores yielded significant (p < .05) main effects for the physical component summary of the SF-12 and for all of the scores for the Quality of Life Index - Cancer Version. The wives' scores yielded only one significant (p < .05) main effect---the health and functioning subscale of the Quality of Life Index. Significant (p < .001) main effects were noted for all areas of the patients' disease-specific quality of life. No significant interactions were noted between either patient age or pathological stage of the prostate cancer and disease-specific quality of life. The mental component summary score of the SF-12 demonstrated significant (p < .05 to p < .01) correlations with most of the Quality of Life Index. The most frequently mentioned recuperative concerns of the radical retropubic couples were sexual dysfunction, family stress and concerns about prognosis. The most frequently mentioned suggested strategies for recovery included: educating oneself about prostate cancer and its treatment to make an informed decision about care, mutual support between the patient and wife, and networking/support groups. For this sample of highly educated, affluent patients from one academic institution, these data indicate that patients experience changes in their health-related quality of life that begins to return to baseline by 3-months post-op. However, at 3-months post-op the patients are still experiencing poor disease-specific quality of life. The wives experienced good to very good health-related quality of life throughout the pre- and post-op periods. Data were collected too soon after surgery to determine the impact of the patient's age and pathological stage of prostate cancer on disease-specific quality of life.
    • Psychosocial, Clinical, and Demographic Predictors of Quality of Life in Pharmacologically Managed and Catheter Ablation Atrial Fibrillation and Atrial Flutter Patients

      Akintade, Bim Fola; Thomas, Sue Ann, 1947- (2011)
      Background: Atrial fibrillation (AF) and atrial flutter (AFL) are the most diagnosed symptomatic cardiac arrhythmias in the United States. Much is known about the Quality of Life (QoL) of AF/AFL patients, but no published study specifically examined the impact of ablation procedures on the QoL of AF/AFL patients with comorbid depression and/or anxiety. Purpose: This study evaluates the contributions of psychosocial, clinical, and demographic variables to QoL in pharmacologically managed and pre-ablated AF and AFL patients, and the change in QoL of these patients after successful catheter ablation procedures. Methods: This was a prospective hypothesis-generating quasi-experimental study with a control group. The study consisted of 75 pharmacologically managed AF/AFL patients and 75 consecutive individuals scheduled for catheter ablation procedures for AF/AFL at the Washington Hospital Center and University of Maryland Medical Center Arrhythmia Center's from April 2010 to March 2011. Hypotheses were tested with cross tabulations, t-tests, ANOVAs, repeated measures ANOVAs, and linear regression analyses. The instruments utilized in the current study include the Beck Depression Inventory II to measure depression, the STAI to measure anxiety, and the subscales of SF-36v2, and SSCL to evaluate QoL. Results: Female and younger AF/ AFL patients have worse QoL, and elevated baseline depressive and anxiety symptoms were significant predictors of baseline QoL. After successful catheter ablation procedures, AF/ AFL patient's demonstrated significant improvements in QoL and depressive and anxiety symptoms compared to control patients over 1 month. Results also demonstrated that females, elevated baseline depressive symptoms, and baseline scores on QoL questionnaire subscales were significant predictors of change in QoL over 1 month. Conclusion: Depression, anxiety, and female gender should be considered as risk factors identifying patients who may require additional evaluation and treatment efforts to manage their cardiac conditions. The implementation of early depressive and anxiety symptom screening may provide information for cost effective and comprehensive approaches to the management of AF/ AFL patients.
    • Quality of life and physiological status as predictors of mortality in patients with implantable cardioverter defibrillators

      Kao, Chi-Wen; Thomas, Sue Ann, 1947- (2006)
      Background. Sudden cardiac death (SCD) is one of the most common causes of death in developed countries throughout the world. The implantable cardioverter-defibrillator (ICD) has been established as an efficient treatment for prevention of SCD. Patients with ICDs commonly experience psychological distress and life change. It is important to assess the impact of the ICD treatment not only on improving survival but also on patients' life quality. Purpose. This study aimed to examine the predictors of quality of life and mortality, and to determine the relationship between quality of life and mortality in patients with ICDs. Methods. This study used the dataset from the Antiarrhythmic Versus Implanted Defibrillator (AVID) controlled clinical trial conducted by the National Institutes of Health (NIH), National Heart, Lung, and Blood Institute. The 507 patients randomly assigned to the ICD treatment in AVID study were recruited in the analysis. The subjects were mostly male (78.3%), with mean age of 64.85+/-10.81 years, mean ejection fraction (EF) of 32.2+/-13.45%, and 19.7% in NYHA (New York Heart Association) I, 28.4% in NYHA II, and 6.7% in NYHA III. The QOL was measured by the SF-36 at baseline, 3 months, 6 months, and 1 year follow-up and by the Quality of Life Index-Cardiac Version (QLI-CV) at baseline and 1 year follow-up. Depression was evaluated by the Mental Health Inventory-5 Items (MHI-5). Data were analyzed by descriptive statistics, multiple regression, logistic regression and Cox regression. Results. The mean total survival time for the ICD patients was 2.61+/-1.24 years. Approximately 25% of the ICD patients (n = 125) died during the period of AVID study. Among these 125 patients, 54 patients survived less than one year. Comparing the scores of QOL measurement at baseline with the scores at one year, PCS (physical component summary score) and MCS (mental component summary score) significantly improved, and QOL-CV increased but did not achieve significance. The ICD patients who received ACEI (angiotensin-converting enzyme inhibitor) therapy, who were younger, who had more stress perception at baseline, and who had better QOL (QLI-CV) had higher possibility of surviving more than one year after ICD implantation. Beyond the effect of bio-psycho-social factors, better QOL (QLI-CV) predicted more than one year survival. For the long-term mortality, the ICD patients who were older, who had more abnormal ECGs (electrocardiogram), who had a history of diabetes, and who perceived their physical health status as worse at last assessment (PCS time-dependent covariate) had a higher risk of dying. Adjusting for the bio-psycho-social factors, worse physical health status (PCS time-dependent covariate) still predicted mortality. Conclusion. Quality of life is an important factor predicting mortality in patients with ICDs. Large numbers of abnormal ECGs, having a history of diabetes, without receiving ACEI therapy, less stress perception at baseline, and older age predict mortality as well.
    • Quality of life, perceived social support and adherence to fluid restriction and treatment schedule among hemodialysis patients

      Schneider, Robert Andrew; Goldmeier, John (1995)
      Issues of quality-of-life and social support are important to nephrology social workers in delivering psychological and concrete services to dialysis patients. However, the patients are often non-compliant with a restriction of fluid gain and their regular treatment schedules. The result of this non-adherence is likely to be excess weight gain leading to hospitalization or even death from pulmonary edema and/or congestive heart failure. There were two aims of the study. One was to associate measures of compliance to both fluid restriction and adherence to treatment schedules with quality-of-life measures, as operationalized by the Medical Outcomes Study SF-36 scales. Secondly, the study sought to examine whether social support was independently associated with quality-of-life or whether it would buffer the ill effects of fluid gain. The hypotheses also tested the association between quality-of-life and social support while controlling for compliance measures. Social support was measured by two instruments, an existing perceived social support scale, and another similar instrument designed by the author. A pilot test of the latter, the Perceived Social Support-Dialysis Scale, yielded a high alpha coefficient (.81). The construct of social support was also confirmed in a LISREL analysis. Fluid-gain data were recorded from patients' charts. The sample consisted of fifty-eight hemodialysis outpatients from an inner-city dialysis site in Baltimore. After correcting for multiple statistical tests, none of the hypothetical associations was supported in the regression analyses although some associations were close to significance. Explanations for lack of positive findings and an interpretation of trends, including a discussion of the potential usefulness of the dialysis social support instrument are addressed. For example, it was noted that the associations between age and the SF-36 scales, while not truly significant, indicated a trend of decreased quality-of-life with age.
    • The relationship of pain characteristics, type of cancer, and opioid consumption to quality of life, psychological distress, and pain outcomes

      Polomano, Rosemary Carol; Belcher, Anne E. (1995)
      The relationship of pain to quality of life (QOL) outcomes has been studied; yet, for the most part, the presence and magnitude of pain have been the major variables of interest. Little is known about the impact of pain types (somatic, visceral and neuropathic) on QOL. The primary purpose of this study was to evaluate the extent to which physiological source(s) of pain, pain duration, intensity, location(s), number of sites, relief, sensory and affective components, and opioid consumption affect perceptions of QOL and psychological distress. In addition, the association and validity of pain language in predicting physiologic pain were evaluated. A convenience sample (N = 100) of subjects with chronic pain from advanced cancer was recruited for study from three outpatient medical oncology practices. Information was collected on age, sex, tumor type, treatment information, average daily opioid requirement, physiologic source(s) of pain, pain location(s), number of painful sites, and duration of pain. Each subject completed the following measures: (a) a Numeric Pain Rating (NRS) Scale for present pain intensity (PPI) and average worst pain intensity (WPI); (b) pain relief scale (VASPR); (c) the sensory and affective Short Form-McGill Pain Questionnaire (SF-MPQ); (d) The Brief Symptom Inventory (BSI) (psychological distress); and, (e) The Quality of Life Survey (QOLS). Data analyses were conducted using The SSPS-PC Program and the SAS Software System. Multiple regression analysis determined that SF-MPQ affective component, VASPR and age accounted for a significant portion (25.3%) of the variance in the QOLS scores, while WPI, VASPR and age explained 21.3% of the model for psychological distress. Discriminant Analysis, Chi-Square analyses and linear logistic regression evaluated significant associations of pain language to physiological pain categories. No significant differences in the QOLS, BSI and average pain intensity were found for pain location and cancer diagnosis using MANOVA's. ANOVA and Student's t-tests assessed differences among pain types. Subjects with a component of neuropathic pain experienced significantly more psychological distress, (p<.05), average pain (p<.01), greater sensory and affective pain (SF-MPQ) (p<.001), and present pain (p<.01).
    • Socio-demographic Factors, Social Supports, and Quality of Life among People Living with HIV/AIDS in Ghana

      Abrefa-Gyan, Tina; Cornelius, Llewellyn Joseph, 1959-; Okundaye, Joshua Nosakhare (2014)
      This study aimed to determine whether quality of life and social support differ by socio-demographic factors and whether socio-demographic characteristics and social support are associated with quality of life in individuals diagnosed with HIV/AIDS in Ghana. This study utilized concepts from the intersection domains of social capital, social network, and social support theories. Using a cross sectional design, survey data were collected from 300 participants selected because they attend support groups meetings, are a convenient sample, and also have experience in participating in research studies. The Medical Outcome Studies (MOS) HIV Health Survey and the MOS Social Support Survey (MOS-SSS) instruments were used to assess quality of life and social support respectively. A demographic questionnaire developed by this researcher was also used to gather demographic information about the respondents. The study used independent sample t-tests to determine possible differences in quality of life and social supports among individuals across socio-demographic factors, Multiple regression was used to determine if socio-demographic factors moderated the relationship between social support and quality of life, and to also identify factors associated with quality of life. Social support was higher for men, married individuals, and those with more than 12 years of education while the reports on quality of life was higher for men. There was a positive association between overall social support and overall quality of life (r = .51). Sex contributed most to quality of life. Males reported poorer quality of life at low social support but better quality of life at higher social support. Females, on the other hand reported lower quality of life compared to the males but their reports of quality of life were approximately the same at both low and high social support. Similarly, those who have children reported slightly better quality of life than those who do not have children but these two groups reported about the same quality of life at high social support. Overall, the findings from this study indicate that the combination of socio-demographic factors and social support related to quality of life. Implications of the findings for practice, research, and policy in Ghana were discussed.