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QUALITY OF LIFE/AFTERCARE

ABSTRACT: INTRODUCTION: Obesity is a long-term morbidity for children diagnosed with CNS tumors. BMI normally declines until the age of adiposity rebound (AR), after which it increases. Tumor location, radiation therapy, or surgery near the hypothalamus increases the risk of obesity. We hypothesized involvement of the hypothalamus would result in a greater BMI, and diagnosis/treatment before AR would lead to the greatest BMI. STUDY METHODS: Retrospective cohort of brain tumor survivors diagnosed from 2001-2011 at Children's Hospital of Wisconsin: chart review extracted BMI z score at diagnosis and two-year follow-up. Children were categorized into six groups, based on age at diagnosis and hypothalamic involvement (HI). Consistent with CDC growth curves, ages were classified as "before AR" (0-41.99 months), "during AR" (42-83.99 months) and "after AR" (84.00 - 120 months old). BMI z-scores were compared using Wilcoxon signed ranks tests. RESULTS: 116 children had two-year follow-up. BMI z score at diagnosis was similar across groups. Children pre-AR and post-AR with HI had higher BMI z scores at two-year follow up than at diagnosis (before AR 0.466 to 1.589 p = 0.004 N = 12, after AR 0.519 to 1.268 p = 0.001 N = 18). No group without HI had increased BMI z score at two year follow up (before AR 0.663 to 0.518 N = 24, during AR 0.279 to 0.278 N = 18, after AR 0.658 to 0.793 N = 24). The before AR and during AR cohort with HI had a higher BMI z score at two-year follow up then those without HI (p = 0.004 and 0.015). The after AR cohort did not significantly differ from those without HI at two-year follow up. CONCLUSIONS: Except for after rebound, tumors survivors with HI have increased BMI compared to those without involvement. Diagnosis before AR is associated with a greater BMI than diagnosis at later age. Future studies can help elucidate endocrine causes of these changes.

SUBMITTER: Strobel K

PROVIDER: S-EPMC4046295 | biostudies-literature | 2014 Jun

REPOSITORIES: biostudies-literature

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Project description:BACKGROUND:Domains other than those commonly measured (physical, psychological, social, and sometimes existential/spiritual) are important to the quality of life of people with life-threatening illness. The McGill Quality of Life Questionnaire (MQOL) - Revised measures the four common domains. The aim of this study was to create a psychometrically sound instrument, MQOL - Expanded, to comprehensively measure quality of life by adding to MQOL-Revised the domains of cognition, healthcare, environment, (feeling like a) burden, and possibly, finance. METHODS:Confirmatory factor analyses were conducted on three datasets to ascertain whether seven new items belonged with existing MQOL-Revised domains, whether good model fit was obtained with their addition as five separate domains to MQOL-Revised, and whether a second-order factor representing overall quality of life was present. People with life-threatening illnesses (mainly cancer) or aged > 80 were recruited from 15 healthcare sites in seven Canadian provinces. Settings included: palliative home care and inpatient units; acute care units; oncology outpatient clinics. RESULTS:Good model fit was obtained when adding each of the five domains separately to MQOL-Revised and for the nine correlated domains. Fit was acceptable for a second-order factor model. The financial domain was removed because of low importance. The resulting MQOL-Expanded is a 21-item instrument with eight domains (fit of eight correlated domains: Comparative Fit Index = .96; Root Mean Square Error of Approximation = .033). CONCLUSIONS:MQOL-Expanded builds on MQOL-Revised to more comprehensively measure the quality of life of people with life-threatening illness. Our analyses provide validity evidence for the MQOL-Expanded domain and summary scores; the need for further validation research is discussed. Use of MQOL-Expanded will enable a more holistic understanding of the quality of life of people with a life-threatening illness and the impact of treatments and interventions upon it. It will allow for a better understanding of less commonly assessed but important life domains (cognition, healthcare, environment, feeling like a burden) and their relationship to the more commonly assessed domains (physical, psychological, social, existential/spiritual).

Project description:OBJECTIVE:To demonstrate challenges in the estimation of change in quality of life (QOL). METHODS:Data were taken from a completed clinical trial with negative results. Responses to 13 QOL items were obtained 12 months apart from 258 persons with Alzheimer's disease (AD) participating in a randomized, placebo-controlled clinical trial with two treatment arms. Two analyses to estimate whether "change" in QOL occurred over 12 months are described. A simple difference (later - earlier) was calculated from total scores (standard approach). A Qualified Change algorithm (novel approach) was applied to each item: differences in ratings were classified as either: improved, worsened, stayed poor, or stayed "positive" (fair, good, excellent). The strengths of evidence supporting a claim that "QOL changed", derived from the two analyses, were compared by considering plausible alternative explanations for, and interpretations of, results obtained under each approach. RESULTS:Total score approach: QOL total scores decreased, on average, in the two treatment (both -1.0, p < 0.05), but not the placebo (=-0.59, p > 0.3) groups. Qualified change approach: Roughly 60% of all change in QOL items was worsening in every arm; 17% - 42% of all subjects experienced change in each item. CONCLUSIONS:Totalling the subjective QOL item ratings collapses over items, and suggests a potentially misleading "overall" level of change (or no change, as in the placebo arm). Leaving the items as individual components of "quality" of life they were intended to capture, and qualifying the direction and amount of change in each, suggests that at least 17% of any group experienced change on every item, with 60% of all observed change being worsening. DISCUSSION:Summarizing QOL item ratings as a total "score" collapses over the face-valid, multi-dimensional components of the construct "quality of life". Qualified Change provides robust evidence of changes to QOL or "enhancements of" life quality.

Project description:The Adult Strabismus Quality of Life Questionnaire (AS-20) and the Amblyopia & Strabismus Questionnaire (A&SQ) both measure health-related quality of life in strabismus patients. We evaluated to what extent these instruments cover similar domains by identifying the underlying quality-of-life factors of the combined questionnaires.Participants were adults from a historic cohort with available orthoptic childhood data documenting strabismus and/or amblyopia. They had previously completed the A&SQ and were now asked to complete the AS-20. Factor analysis was performed on the correlation-matrix of the combined AS-20 and A&SQ data to identify common underlying factors. The identified factors were correlated with the clinical variables of angle of strabismus, degree of binocular vision, and visual acuity of the worse eye.One hundred ten patients completed both questionnaires (mean age, 44 years; range, 38-51 years). Six factors were found that together explained 78% of the total variance. The factor structure was dominated by the first four factors. One factor contained psychosocial and social-contact items, and another factor depth-perception items from both questionnaires. A third factor contained seven items-only from the AS-20-on eye strain, stress, and difficulties with reading and with concentrating. A fourth factor contained seven items-only from the A&SQ-on fear of losing the better eye and visual disorientation, specific for amblyopia. Current visual acuity of the worse eye correlated with depth-perception items and vision-related items, whereas current binocular vision correlated with psychosocial and social-contact items, in 93 patients.Factor analysis suggests that the AS-20 and A&SQ measure a similar psychosocial quality-of-life domain. However, functional problems like avoidance of reading, difficulty in concentrating, eye stress, reading problems, inability to enjoy hobbies, and need for frequent breaks when reading are represented only in the AS-20. During the development of the A&SQ, asthenopia items were considered insufficiently specific for strabismus and were excluded a priori. The patients who generated the items for the AS-20 had, in majority, adulthood-onset strabismus and diplopia and were, hence, more likely to develop such complaints than our adult patients with childhood-onset strabismus and/or amblyopia.

Project description:Knowledge of experiences from prostate cancer is sparse in a longitudinal perspective. From a nursing perspective, results from combined qualitative and quantitative studies are lacking however would present the broadest knowledge base for best practice. Present descriptions of medical-physical symptoms such as urinary, bowel and sexual dysfunction from quantitative inquiries need be complemented with qualitative results. Such knowledge is essential in relation to treatment and communication with patients over the years and not only shortly after surgery.A longitudinal study was formatted to investigate general and specific health quality and sense of coherence quantitative alterations over three years. A general health quality module (EORTC QLC-C30) and a disease-specific module (EORTC PR-25) were applied for the longitudinal study together with the Orientation to life questionnaire (SOC), measuring a persons' sense of coherence. In order to strengthen reliability and compensate for low participation we used the Directed content analysis for interviewing and analysis. The method allows using findings from earlier research when interviewing along with detecting new areas. Twenty-one men were followed over three years and six of them, in the third year, accepted to be interviewed.We found high quality of life ratings and extended the study with follow-up interviews in year three, to investigate whether questionnaire results were in line with interview findings. We found high life quality and functioning ratings that were in line with qualitative descriptions. Interview analysis showed retrieval of life as lived before, yet in a different way, the men never forgot the diagnosis event, had a unique illness history worth hearing, and had come to terms with most treatment-related shortcomings. Sense of coherence ratings were medium to high and confirmed stability over time in comprehensibility, manageability and meaningfulness after prostate cancer treatment.Over the years, the men's negative experiences from shifted into 'a good life' though in a different way than before. The interpretation is supported in the study by quantitative results showing a high degree of functioning. The men's sense of coherence seamed to support their handling of life three years after prostate cancer treatment.

Project description:BACKGROUND:Burden of stroke is rising due to the demographic and epidemiological transitions in Sri Lanka. Assessment of success of stroke-management requires tools to assess the quality of life (QOL) of stroke survivors. Most of currently used QOL tools are developed in high-income countries and may not reflect characteristics relevant to resource-constrained countries. The aim was to develop and validate a new QOL tool for stroke survivors in Sri Lanka. METHODS:The COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) checklist was referred. A conceptual framework was prepared. Item generation was done reviewing the existing QOL tools, inputs from experts and from stroke survivors. Non-statistical item reduction was done for the 36 generated items with modified-Delphi technique. Retained 21 items were included in the draft tool. A cross sectional study was done with 180 stroke survivors. Exploratory Factor Analysis was done and identified factors were subjected to varimax rotation. Further construct validity was tested with 6 a-priori hypothesis using already validated tools (SF-36, EQ-5D-3?L) and a formed construct. Internal consistency reliability was assessed with Cronbach alpha. RESULTS:Four factors identified with principal-component-analysis explained 72.02% of the total variance. All 21 items loaded with a level?>?0.4. The developed tool was named as the Post-stroke QOL Index (PQOLI). Four domains were named as "physical and social function", "environment", "financial-independence" and "pain and emotional-wellbeing". Four domain scores of PQOLI correlated as expected with the SF-36, EQ-5D Index and EQ-5D-VAS scores. Higher domain scores were obtained for ambulatory-group than the hospitalized-group. Higher scores for financial-independence domain were obtained for the group without financial-instability. Five a-priori hypothesis were completely proven to be true. Cronbach-alpha level ranged from 0.682 to 0.906 for the four domains. CONCLUSIONS:There is first evidence for sufficient construct validity of the PQOLI as a valid QOL tool for measuring the QOL of stroke survivors with satisfactory internal consistency reliability.

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