Browsing by Subject "Quality of Life"
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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.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. [Keywords: Health-related quality of life, pediatric cochlear implants, parent proxy, cross-cultural.]Item Disease-Specific Symptoms and Health-Related Quality of Life in Children and Adolescents with Inflammatory Bowel Disease(2013-07-17) Vaughan-Dark, Chelsea AnnThis study assesses generic and disease-specific Health-Related Quality of Life (HRQOL) in children and adolescents with Inflammatory Bowel Disease (IBD). More specifically, the purpose of the study is to address the relationship between disease- specific indicators, both on a symptom-by-symptom basis and as a whole, to overall HRQOL. Self- and proxy-report versions of the Pediatric Quality of Life Inventory? (PedsQL?) Generic Core Scales and the newly developed Pediatric Quality of Life Inventory? Gastrointestinal Symptoms Module were administered to 187 parent-child dyads at ten study sites across the United States. Disease-specific indicators included: stomach pain, stomach upset, trouble swallowing, heartburn and reflux, gas and bloating, constipation, and diarrhea. It was hypothesized that caregiver- and child-reported disease-specific HRQOL would be positively correlated with generic HRQOL, and that physical disease-specific indicators would contribute the greatest variance in total generic HRQOL scores, for both self and proxy report. Results confirmed the hypothesis that disease-specific HRQOL would be positively correlated with generic HRQOL for children and caregivers. Multivariate regression results revealed that the Stomach Pain and Hurt, Worry, Medicines, and Communication scales contributed the most variance to overall HRQOL scores for children. The same analysis performed for parent ratings yielded one statistically significant scale: Worry. In essence, intervention efforts aimed at reducing the influence of worry and anxiety may prove more effective in improving HRQOL outcomes than interventions targeting reduction of physical symptoms.Item Factors Involved in Health-Related Quality of Life in Children with Immune Thrombocytopenia: A Study from the Dallas ITP Cohort(2013-08-01) 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 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.BACKGROUND: 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. [Keywords: camp, quality of life, hope, family, cancer]Item Predicting Quality of Life Five Years Following Medical Discharge for a Traumatically-Acquired Spinal Cord Injury(2012-10-19) Erosa, NormaThis dissertation presents the prediction of quality of life (QoL), composed of by life satisfaction and self-perceived health status, across 5 years post a spinal cord injury (SCI) hospital discharge. Predictor variables of functional independence, pain, and family satisfaction, as mediated by environmental accessibility are examined. Environmental accessibility is conceptualized as being composed of mobility and social integration. Data are a subset from a longitudinal study of adjustment following disability. Two models were examined in order to predict QoL, Model 1 (Life Satisfaction) and Model 2 (Self-Perceived Health Status). Results from this study were obtained by testing models using path modeling. Evaluation indices suggest good to adequate model fit, CFI, RMSEA, and SRMR for Model 1 and Model 2. In Model 1, results indicated that mobility and social integration, components of environmental accessibility, mediated the relationship between functional independence and life satisfaction (beta = 0.243, p = 0.009 and beta = 0.120, p = 0.038, respectively). In Model 2, the component of mobility of environmental accessibility mediated the relationship between functional independence and self-perceived health status (beta = 0.288, p = 0.002). Results indicate that access to the environment is an important predictor of life satisfaction and perceived health status five years after medical discharge for a traumatically-acquired SCI. These factors of environmental access ? mobility and social integration ? appear to be more important determinants of quality of life post-SCI than functional impairment or the presence of pain. Programs that enhance mobility and social integration following return to the community following SCI may be indicated. Furthermore, given that the construct of environmental accessibility is relatively new, studies that examine this construct are needed in order to better understand how it is best conceptualized.Item Predictors of Quality of Life in Multiple Sclerosis: Relationships between Cognitive, Physical, and Subjective Measures of Disease Burden(2011-12-14) Noll, Kyle Richard; Lacritz, Laura H.The varied constellation of symptoms characteristic of multiple sclerosis (MS) are often functionally impairing, affecting the health-related quality of life (QoL) of many of those afflicted. However, it remains unclear to what extent subjective, cognitive, and physical measures differentially predict overall health-related QoL in MS, and which (combination of) factors are most useful when making clinical inferences regarding patient well-being. Stepwise linear regression analyses were used to investigate predictors of QoL in 55 consecutive MS patients, recruited as part of the Cognition and Demyelinating Disease project at the UTSW MS Clinic. Out of all cognitive, physical, and self-report predictors of overall health-related QoL, only the Modified Fatigue Impact Scale (MFIS) was significant, accounting for 31% of the variance in Overall scores on the MSQOL-54 (p < .001). Significant predictors of mental health-related QoL included the Quick Inventory of Depressive Symptoms (QIDS) and the Modified Fatigue Impact Scale (MFIS) (p < .001). The QIDS alone accounted for 64% of the variance in MSQOL-54 Mental Composite scores, which increased to 71% with the inclusion of the MFIS. Significant predictors of physical health-related QoL included the MFIS, Timed 25-Foot Walk (T25FW), and Multiple Sclerosis Neuropsychological Questionnaire (MSNQ) (p < .001). The MFIS alone accounted for 72% of the variance in MSQOL-54 Physical Composite scores, which increased to 76% with the inclusion of the T25FW, and 78% when the MSNQ was also added. These results suggested that measures of self-reported fatigue and depression were the best predictors of health-related QoL in the domains of overall, physical, and mental functioning. In light of these findings, screening for fatigue and mood dysregulation should be incorporated into routine clinical evaluations of MS patients. Results of ROC analyses revealed that the QIDS and MFIS were both significant discriminators of level of QoL (high vs. low) for each of the three MSQOL-54 summary measures (AUCs = .79 to .92). Examining rates of correct classification, specificity, and sensitivity, indicated that cut-scores of greater than nine on the QIDS and greater than 37 on the MFIS were optimal for discriminating between low and high QoL.Item Psychosocial Variables in Outpatients Receiving Intrathecal Baclofen or Pain-Pump Therapy(2013-01-17) Edwards, Deidre Marie; Gatchel, Robert J., Ph.D., ABBPNumerous studies have demonstrated that patients suffering from chronic health conditions are at an increased risk for experiencing psychosocial distress and developing psychological difficulties. Spasticity, a chronic condition generally defined as an increase in muscle tone while at rest, is frequently observed in a variety of medical populations. Spasticity is not only painful, it can also significantly impair mobility, daily functioning, and quality of life. Intrathecal baclofen and pain pump therapy have been viable treatment options for those patients with severe spasticity who have not responded to less invasive treatments. Several small studies have examined quality of life and patient-reported efficacy for spasticity patients receiving implantable intrathecal baclofen (ITB) therapy. However, no research has examined what variables may play a role in quality of life outcomes for spasticity patients across and between the varied diagnostic populations treated with ITB or baclofen pain-pump therapy in a large sample. The proposed study examined several psychosocial variables (e.g. health-related quality of life [HRQOL], level of social functioning, self-reported levels of optimism/pessimism) and psychological variables (e.g. depressive and other psychiatric symptoms, as well as self-reported pain ratings) within a heterogeneous population of patients that receive ongoing care with intrathecal baclofen or baclofen pain-pump therapy. A sample of 125 adults, aged 19 - 82 years (M=49.06) who had been treated with ITB and other intrathecal pain medications, were assessed. Participants individually completed a packet of questionnaires measuring the primary study constructs. Analyses (One-way ANOVAs and t-tests) showed that the sample differed greatly from the normative population across measures of depression, quality of life, pain, and social functioning. Additionally, group differences were discovered between subgroups of spasticity patients. Multiple regression analyses showed that higher satisfaction with oneÕs social roles, lower levels of feeling limited in oneÕs roles by his/her emotional health, and higher rates of vitality were predictive of quality of life.Item Quality of Life Assessment as a Preliminary Study on the Spatial Appraisal and Valuation of Environment and Ecosystems Methodology(2011-02-22) Klein, Ross HunterThe concept of quality of life (QOL) has been addressed for decades. It was not until recent times when geographical information systems (GIS) have become available that a locale-specific approach could be enabled. Even then, analysis to date has been conducted mostly at the resolution of city or county level. The study presented describes an innovative methodology that may appraise QOL at finer resolutions, i.e. more localespecific. The new approach is called Spatial Appraisal and Valuation of Environment and Ecosystems, or SAVEE. This thesis research is a proof-of-concept study as the first account of the SAVEE methodology. It is to set the stage for future studies toward a more comprehensive framework. In this preliminary study of locale-specific QOL, the SAVEE methodology was used to illustrate the possibility of handling QOL factors in a dynamic manner. The assessment includes three major steps: 1) data preparation, 2) data conversion and normalization, and 3) combining contributions of factors being considered. In the first step, the geospatial data layer of a factor in consideration was input into GIS to plot a proximity map of the feature, e.g. parks or fire stations. In Step Two, each factor was first assigned a range of weight according to the location of a site on a proximity map in terms of the factor?s favorability-unfavorability. In the third step, weights from each factor were combined in a pair-wise manner, e.g. park and fire station proximities, or two factors at a time. The weight combining is done by deploying map algebra formula derived from the expert system algorithm EMYCIN. The computation was done iteratively until all factors were exhausted. The final results were coded as a gradient map of an integrated and locale-specific QOL index in the range of (-1, 1). In this preliminary study, the City of College Station, Texas was used as the study site. A set of factors and their respective ranges of weight were used in the study. By adjusting the incorporation of various factors and their ranges, a series of QOL maps for the city was generated. The resulting QOL maps indicate what factors and ranges may or may not have contributions toward a holistic overall picture of the QOL of a city in the locale-specific context. The SAVEE methodology proved to be successful in handling qualitative hedonic factors in a locale-specific quantitative manner through the GIS interface.Item Quality of Life Associations with Caries Experience and Behavioral Challenges in the Dental Setting Among Children with Orofacial Clefts(2015-02-06) Cook, AngelaChildren with orofacial clefts experience many challenges beyond facial differences including risks for psychosocial and behavioral problems. As a result, evaluation for negative impacts on health-related quality of life (HRQOL) is highly important. Because the cleft condition manifests orally, more research is needed with regard to the dental impact on HRQOL. It is currently unknown how significantly HRQOL correlates with dental status or behavior of these children. The objective of this study was to evaluate HRQOL and surgical history of children with orofacial clefts to see if these measures correlate with caries experience and/or behavior in the dental chair. Patient data was obtained with IRB-approval. The study population included patients with a non-syndromic orofacial cleft diagnosis between the ages of 4 and 10. Parent-reported data was obtained for 79 patients. Self-reported data was obtained for 23 patients. PedsQL Psychosocial Summary scores, PedsQL Total scores, number of surgeries and demographics were collected from the psychology department craniofacial clinic database. Decayed, missing, filled teeth (dmft) scores and Frankl scores during dental exams were collected from dental records. Median time between encounters with the psychology providers and the dental clinic for all patients was 42 days. Spearman?s Rank Correlation test identified significant correlations between parent-reported PedsQL Psychosocial Summary scores and dmft scores (p = 0.006) and PedsQL Total scores and dmft scores (p = 0.022), indicating that for the parent-reported group higher caries experience is significantly correlated with lower HRQOL. Parent-reported PedsQL data were not correlated with Frankl scores. There is also no correlation between dmft or Frankl scores and the number of surgeries in the parent-reported group. For the self-reported group, significance was demonstrated between PedsQL Psychosocial Summary scores and Frankl scores (p = 0.002) and PedsQL Total scores and Frankl scores (p < 0.000), indicating that for the self-reported group lower HRQOL is significantly associated with poorer behavior in the dental chair. Self-reported PedsQL data were not correlated with dmft scores. There is also no correlation between dmft or Frankl scores and the number of surgeries in the self-reported group. This study demonstrates that higher caries experience is associated with significantly lower HRQOL in children with orofacial clefts for the parent-reported group. Also, significantly lower HRQOL in children with orofacial clefts is associated with poorer behavior in the dental chair for the self-reported group. The number of surgeries a child with orofacial clefts has undergone is not associated with caries experience or behavior in the dental chair.Item Screening of Mood Disorders Using Self-Reports In Patients with Epilepsy: Sensitivity and Specificity(2007-08-08) Banta Jr., Albert Stephen; Trivedi, MadhukarThe prevalence of mood and anxiety disorders in outpatients with epilepsy seen at a tertiary care epilepsy center and the impact of these disorders on patient quality of life are not well defined. Also methods designed to assist physicians in the rapid diagnosis of these disorders, such as those used by Jones et al 2005a;b, need further assessment. Eligible outpatients (N = 88) with a diagnosis of epilepsy presenting at a tertiary care center were enrolled in the study during October 2006 to May 2007. After providing consent, patients had undergone the 16 item Quick Inventory of Depressive Symptomatology-Self Rating (QIDS-SR16), Beck Depression Inventory-II (BDI-II), Quality of Life Inventory in Epilepsy-31 (QOLE-31) and the Mood Disorders Questionnaire (MDQ). Eligible patients were contacted within three days of initial screening via telephone and underwent the Mini International Neuropsychiatric Interview (MINI) and the 16 item Quick Inventory of Depressive Symptomatology-Clinician Rating (QIDS-C16). A total of 76 patients completed all items and the results indicated a prevalence rate of 32% for current Axis I disorders. The QIDSSR16, QIDS-C16, and BDI-II appeared to be useful in screening for mood and anxiety disorders when compared to psychiatric disorders detected by the MINI. Anxiety disorders were found to be more common than mood disorders and also had a significant negative effect on patients' QOL. The mood disorder group, mood and anxiety disorder group, and mood disorder plus group in this study experienced a greater negative impact on QOL when compared to the Axis I group and the anxiety alone group. Based on this study and Jones et al. (2005a;b) physicians treating patients with epilepsy in tertiary care settings could expect approximately 16-24% of their patients to experience a comorbid mood disorder. Implementation of screening programs that include self-reports are effective at assisting in the clinical identification of patients with mood and/or anxiety disorders so that treatment can be initiated. These psychiatric conditions are associated with a particularly poor quality of life in patients with epilepsy. Increased attention to the presence of psychiatric conditions in patients with epilepsy is important to patient QOL.Item Trajectories of Life Satisfaction During the First 10 Years Following Traumatic Brain Injury(2014-05-23) Williamson, MeredithTo examine the predictive relationships of functional ability, gender, and age on the longitudinal trajectories of life satisfaction across 10 years following onset of traumatic brain injury (TBI). Participants were part of the Traumatic Brain Injury Model Systems (TBIMS) longitudinal study of outcomes following TBI. Hierarchical linear modeling (HLM) was employed to assess changes in life satisfaction across 10 years post-injury as a function of functional ability, gender and age. The sample included 7,813 participants (2,170 women, 5,643 men) who were included in the TBIMS database. Satisfaction with life across 10 years post-injury was measured by the Satisfaction with Life Scale administered at 1, 2, 5, and 10 years post-injury. The Functional Independence Measure (FIM?) was administered to measure functional ability at 1, 2, 5, and 10 years post-injury. Additional predictor variables included gender and age. Participants? life satisfaction scores remained stable across 10 years post-injury. Greater functional ability as measured by the FIM? Total scale, FIM? Cognitive subscale, and FIM? Motor subscale was associated with greater life satisfaction across time. A significant interaction effect between age and functional ability was present. Gender was not a significant predictor of life satisfaction. Life satisfaction across 10 years post-injury is relatively stable. Greater functional ability was associated with greater life satisfaction. Older participants with greater functional impairments had higher life satisfaction scores across 10 years post-injury compared to their younger counterparts.Item Utilizing Discrepancy Theory to Quantitate Quality Of Life in Chronically Ill Children(2007-12-03) Webb, Bryn; Birod, Carlos E.BACKGROUND: Quality of Life (QoL) is a ubiquitous yet poorly defined concept in clinical medicine. Many widely used instruments to measure QoL lack a theoretical basis and therefore may not provide accurate assessment. Multiple discrepancy theory advocates that net satisfaction is determined by evaluating the difference or gap between current life circumstances and a standard of comparison. A QoL instrument based on discrepancy theory has been developed by our research group to evaluate children with chronic diseases. OBJECTIVE: To evaluate the parent-child agreement for discrepancy theory items on the GAP QoL Questionnaire for children with chronic illness. DESIGN/METHODS: Children and parents were recruited for this pilot study when attending regularly scheduled appointments in a variety of outpatient clinics at The Hospital for Sick Children (SickKids). Trained interviewers administered the GAP Questionnaire to parents- and to their children if older than age 10. Children and parents answered the questionnaire blind to each other's answers. RESULTS: 77 participants (28 children, 49 parents: 24 parent/child pairs) were enrolled. The most important items for determining QoL generated by the GAP Questionnaire differed for children and parents (See Table). The overall weighted Kappa value for parent-child agreement on the GAP Questionnaire was 0.349 indicating moderate agreement. Items with the highest agreement were having pets (0.6962), getting along with brothers/sisters (0.5886), and the place religion has in your life (0.549).Item Where There Is a Will There Is a Way: Defining the Path between Hope, Pain and Quality Of Life in Pediatric Acute Lymphoblastic Leukemia Survivors(2011-12-12) Foxwell, Aleksandra Aceska; Germann, JulieAcute Lymphoblastic Leukemia (ALL) is the most common childhood cancer, with an expected long-term survival rate of approximately 80 – 85%. Observations have lead researchers to believe that adolescent and young adult survivors of childhood ALL have an unexpectedly high frequency of lower back pain. This increase of pain is attributed to the number of lumber punctures during treatment. Various factors influence levels of pain (i.e. BMI, exercise and neuroticism) and pain has been shown to have a negative effect on quality of life. Hope, a construct that has not been widely studied in the oncology literature, may be a buffer between pain and quality of life, meaning that those with higher hope are able to cope with their pain more effectively and in turn have a better quality of life. Moreover, because survivors have had an aversive experience, they may have increased levels of hope, thus despite high pain levels have a positive quality of life. Results suggested that ALL survivors reported higher pain ratings than siblings, but lower total hope and agency. Agency and total hope were significant predictors of QoL at time 2 over and above QoL at time 1 and mediated the relationship between pain time 1 and QoL time 2 when QoL time was not a covariate. These results conclude that hope and more specifically, agency, should be further examined in pediatric oncology and merits the development and investigation of a hope intervention.