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At least 775 records · Page 43Linked to original sources
PubMed2006

Health-related quality of life of patients with juvenile idiopathic arthritis coming from 3 different geographic areas. The PRINTO multinational quality of life cohort study.

OBJECTIVES: To compare health-related quality of life (HRQL) and to identify clinical determinants for poor HRQL of patients with juvenile idiopathic arthritis (JIA) coming from three geographic areas. METHODS: The HRQL was assessed through the Child Health Questionnaire (CHQ). A total of 30 countries were included grouped in three geographic areas: 16 countries in Western Europe; 10 in Eastern Europe; and four in Latin America. Potential determinants of poor HRQL included demographic data, physician's and parent's global assessments, measures of joint inflammation, disability as measured by Childhood Health Assessment Questionnaire (CHAQ) and erythrocyte sedimentation rate. Poor HRQL was defined as a CHQ physical summary score (PhS) or psychosocial summary score (PsS) <2 S.D. from that of healthy children. RESULTS: A total of 3167 patients with JIA, younger than 18 yrs, were included in this study. The most affected health concepts (<2 S.D. from healthy children) that differentiate the three geographic areas include physical functioning, bodily pain/discomfort, global health, general health perception, change in health with respect to the previous year, self-esteem and family cohesion. Determinants for poor HRQL were similar across geographic areas with physical well-being mostly affected by the level of disability while the psychosocial well-being by the intensity of pain. CONCLUSION: We found that patients with JIA have a significant impairment of their HRQL compared with healthy peers, particularly in the physical domain. Disability and pain are the most important determinants of physical and psychosocial well-being irrespective of the geographic area of origin.

Adolescent↗
PubMed2006

Human development II: we need an integrated theory for matter, life and consciousness to understand life and healing.

For almost a decade, we have experimented with supporting the philosophical development of severely ill patients to induce recovery and spontaneous healing. Recently, we have observed a new pattern of extremely rapid, spontaneous healing that apparently can facilitate even the spontaneous remission of cancer and the spontaneous recovery of mental diseases like schizophrenia and borderline schizophrenia. Our working hypothesis is that the accelerated healing is a function of the patient's brain-mind and body-mind coming closer together due to the development of what we call "deep" cosmology. To understand and describe what happens at a biological level, we have suggested naming the process adult human metamorphosis, a possibility that is opened by the human genome showing full generic equipment for metamorphosis. To understand the mechanistic details in the complicated interaction between consciousness and biology, we need an adequate theory for biological information. In a series of papers, we propose what we call "holistic biology for holistic medicine". We suggest that a relatively simple model based on interacting wholenesses instead of isolated parts can shed a new light on a number of difficult issues that we need to explain and understand in biology and medicine in order to understand and use metamorphosis in the holistic medical clinic. We aim to give a holistic theoretical interpretation of biological phenomena at large, morphogenesis, evolution, immune system regulation (self-nonself discrimination), brain function, consciousness, and health in particular. We start at the most fundamental problem: what is biological information at the subcellular, cellular, and supracellular levels if we presume that it is the same phenomenon on all levels (using Occam's razor), and how can this be described scientifically? The problems we address are all connected to the information flow in the functioning, living organism: function of the brain and consciousness, the regulations of the immune system and cell growth, the dynamics of health and disease. We suggest that life utilizes an unseen fine structure of the physical energy of the universe at a subparticular or quantum level to give information-directed self-organization; we give a first sketch of a possible fractal structure of the energy able to both contain and communicate biological information and carry individual and collective consciousness. Finally, thorough our analysis, we put up a model for adult human metamorphosis.

Adult↗
PubMed2004

Development of a health-related quality of life measure for boys with haemophilia: the Canadian Haemophilia Outcomes--Kids Life Assessment Tool (CHO-KLAT).

Several measures of quality of life (QoL) are available for children with haemophilia. However, most are not disease-specific and few focus on children's perspectives. The purpose of this study was to develop a psychometrically sound measure of QoL that included the perspectives of boys with haemophilia. A list of potential items was developed from the literature, other measures, and input from five discussion sessions with adults with haemophilia, children with haemophilia and their parents and haemophilia nurses. The list was augmented with items generated by three focus groups with children and three focus groups with parents. These groups also prioritized items and recommended a domain structure. Supplemental information was gathered by surveying haematologists. Data from all sources were analysed to reduce the number of items using a two-step approach, based on rules that weighted the children's priorities most heavily. The remaining items were compiled into a questionnaire that was pilot tested with 10 children and their parents. The total item pool contained 228 potential items. Of these, 33 were removed based on three focus groups and survey responses, 72 were removed after the completion of all focus groups and 46 were removed due to redundancy. This resulted in a 77-item version of the CHO-KLAT. Pilot testing identified the need to subdivide two items, resulting in a 79-item CHO-KLAT. The CHO-KLAT is a promising disease-specific measure of QoL that reflects children's unique perspectives. This child-centric focus distinguishes the CHO-KLAT from alternative measures of QoL. Further research will assess the measurement properties of the CHO-KLAT.

Adolescent↗
PubMed2006

The beneficial effect of alfuzosin 10 mg once daily in 'real-life' practice on lower urinary tract symptoms (LUTS), quality of life and sexual dysfunction in men with LUTS and painful ejaculation.

OBJECTIVE: To determine the efficacy and safety of the selective alpha(1)-blocker alfuzosin in men with lower urinary tract symptoms (LUTS) and painful ejaculation, compared with those with LUTS only, as painful ejaculation is one of the most prevalent, differentiating and bothersome symptoms in men with chronic prostatitis/chronic pelvic pain syndrome. PATIENTS AND METHODS: In all, 4857 sexually active men with LUTS had an evaluable answer to the Danish Prostate Symptom Score for Sexual Symptoms question related to pain/discomfort on ejaculation at enrolment in a 6-month open-label study with alfuzosin 10 mg once daily. Efficacy was analysed at the endpoint in the intent-to-treat population. RESULTS: Of the 4857 men, 997 (20.5%) had pain/discomfort on ejaculation and 889/997 (89.2%) considered it was a problem. At inclusion, men with painful ejaculation had more severe LUTS and bother than men with LUTS only. Erectile dysfunction (ED) and reduced ejaculation were more prevalent (74.5% and 71.9%, respectively) and bothersome in men with painful ejaculation than in those with no pain (59.6% and 57.4%, respectively). Under alfuzosin treatment, all variables in both groups significantly improved from baseline; men with painful ejaculation compared to LUTS-only had similar improvements in weighted scores for LUTS (-7.8 vs -7.7), bother (-1.7 vs -1.7), and reduced ejaculate (-0.5 vs -0.4) but greater improvements in ED (-0.6 vs -0.4; P < 0.001). The weighted score for painful ejaculation decreased from 2.2 to 0.8 (P < 0.001). Alfuzosin was well tolerated in both groups. CONCLUSIONS: This 6-month open-label study suggests that alfuzosin 10 mg once daily significantly improves LUTS, quality of life and sexual function in men with prostatitis-like symptoms, and is well tolerated.

Adrenergic alpha-Antagonists↗
PubMed2000

Origin of life. Life as we don't know it.

There are two main groups of theories for the origin of life on Earth, the prebiotic broth theories and the hydrothermal theories, exemplified by the iron-sulfur world theory. In his Perspective, Wächtershäuser discusses the report by Cody et al., which provides key support for the latter proposal.

Carbon Monoxide↗
PubMed2000

The EQ-5D--a generic quality of life measure-is a useful instrument to measure quality of life in patients with Parkinson's disease.

OBJECTIVE: To test the feasibility and validity of the EQ-5D (a widely used generic (disease non-specific) quality of life (QoL) instrument which allows comparisons between different patient groups and the general population) to assess QoL in patients with Parkinson's disease. METHODS: All 124 patients with Parkinson's disease seen in a community based study on the prevalence of parkinsonism were asked to complete a QoL battery comprising the EQ-5D, the medical outcome study short form (SF-36), the PDQ-39, a disease specific instrument to assess QoL in PD, and the Beck depression inventory. A structured questionnaire interview and a complete neurological examination including the Hoehn and Yahr stage of illness scale, the Schwab and England disability scale, the motor section of the unified Parkinson's disease rating scale (UPDRS), and the mini mental state examination (MMSE) were performed on the same day. RESULTS: The response rate was 78% and the completion rate of the EQ-5D among responders was 96%. The EQ-5D summary index correlated strongly with the PDQ-39 (r=-0.75, p<0.0001) as well as the physical score of the SF-36 (r=0.61, p<0.0001). There was a significant correlation of the EQ-5D summary index with disease severity, as measured by the Hoehn and Yahr stage of illness, the Schwab and England disability scale, the motor section of the UPDRS, and the depression score. The EQ-5D summary index also distinguished between patients with and without depression, falls, postural instability, cognitive impairment hallucinations, and those with deterioration of health over the previous year. CONCLUSION: The EQ-5D is a feasible and valid instrument to measure QoL in Parkinson's disease and reflects the severity and complications of the disease.

Activities of Daily Living↗
PubMed1992

Measuring the quality of life of patients with benign prostatic hyperplasia. Assessment of the usefulness of a new quality of life questionnaire specially adapted to benign prostatic hyperplasia patients.

A questionnaire consisting of 36 questions based on a visual analogue scale for measuring the quality of life (QOL) of benign prostatic hyperplasia (BPH) patients is presented and assessed. The sensitivity of the questionnaire is demonstrated by its ability to register a statistically significant (p less than 0.01) improvement of QOL after prostate surgery (transurethral resection of the prostate). Its reliability is shown by its ability to give reproducible results in a nonoperated BPH patient group. Patient compliance has been excellent. It is discussed to what extent questions directly concerning symptoms from prostatism should be included in QOL questionnaires for BPH patients. Nonparametric statistics are applied. It is concluded that questionnaires like this are useful tools in the assessment of BPH patients, irrespective of the treatment modality. They will probably be of particular value in studies of drug therapy of BPH, complementing methods of assessment like symptom score and urodynamic parameters.

Humans↗
PubMed1997

Remaining active in later life. The role of locus of control in seniors' leisure activity participation, health, and life satisfaction.

Although the physical and psychological benefits of feeling in control are well-documented in the research literature, the mechanisms that account for these effects have received less attention. The present study was designed to examine the potential mediating role of exercising and participation in nonphysical leisure activities, such as attending cultural events, involvement in volunteer organizations, and so on, in the relation between perceived control and well-being in seniors. The results indicated that an internal locus of control was positively related to exercising and participation in leisure activities. Exercising and leisure activity participation, in turn, were predictive of better perceived health and greater life satisfaction. These findings point to the potential benefits of increasing seniors' sense of control as a means to promote exercising and to increase leisure activity participation and, consequently, to enhance well-being.

Aged↗
PubMed1994

Quality of life, symptoms and pulmonary function in asthma: long-term treatment with nedocromil sodium examined in a controlled multicentre trial. Nedocromil Sodium Quality of Life Study Group.

This study was designed to measure improvement in quality of life of patients with asthma, using a standardized disease-specific questionnaire, the St George's Respiratory Questionnaire, in a year long double-blind, placebo-controlled, group comparative study with nedocromil sodium. Two other questionnaires were used: the Sickness Impact Profile (a measure of general health) and the Hospital Anxiety and Depression Scale. Measurements were made at baseline and following 24 and 48 weeks of treatment. Response to therapy was also evaluated using daily diary card and peak flow measurements, clinic assessments and spirometry. Following a 4 week baseline, 719 adult asthmatics were randomized to treatment with 4 mg nedocromil sodium or placebo. Patients currently maintained on inhaled corticosteroids received treatments four times daily, those on bronchodilator alone received treatments twice daily. The Impacts component of the St George's Respiratory Questionnaire was significantly improved in patients receiving nedocromil sodium, as were night-time asthma, asthma severity at clinic, and daytime inhaled bronchodilator use. In patients receiving placebo, most of the traditional variables improved, and all three questionnaires recorded significant improvements in health. Patients and clinicians judged nedocromil sodium more effective than placebo. The improvement in St George's Questionnaire score in the nedocromil sodium treated patients was approximately double the change considered to be clinically significant. The study has shown that improvements in health with prophylactic therapy for asthma may be quantified by the use of a standardized disease-specific questionnaire.

Adolescent↗
PubMed2006

Parsimonious and efficient assessment of health-related quality of life in osteoarthritis research: validation of the Assessment of Quality of Life (AQoL) instrument.

BACKGROUND: The Assessment of Quality of Life (AQoL) utility instrument was psychometrically developed for the general population. This study aimed to explore its potential as an osteoarthritis (OA) outcome measure. METHODS: WOMAC, Lequesne index, SF-36, Visual analogue scales and the AQoL were administered to 222 people with OA. The ability of each questionnaire to detect differences between groups was based on (i) self-rated health (SRH) and, (ii) differences between people on an orthopedic waiting list (WL) vs people with OA in the community (C). Comparisons included effect size, relative efficiency and receiver operator characteristic curves. RESULTS: All instruments detected differences between groups; however no one instrument exhibited superior efficiency. The AQoL demonstrated strong psychometric properties. CONCLUSION: The AQoL has equivalent performance to comparator questionnaires commonly used in OA research and would be a useful adjunct to well-established disease specific scales. The AQoL has important advantages; brevity (12 items), facilitates comparisons between disease groups, and delivers a utility score that can be used in health economic evaluations.

Aged↗
PubMed1998

Life after breast cancer: understanding women's health-related quality of life and sexual functioning.

PURPOSE: To describe the health-related quality of life (HRQL), partner relationships, sexual functioning, and body image concerns of breast cancer survivors (BCS) in relation to age, menopausal status, and type of cancer treatment. PATIENTS AND METHODS: A cross-sectional sample of BCS in two large metropolitan areas was invited to participate in a survey study that included the following standardized measures: the RAND 36-Item Health Survey; the Centers for Epidemiologic Studies-Depression Scale (CES-D); the Dyadic Adjustment Scale (DAS); the Breast Cancer Prevention Trial (BCPT) Symptom Checklist; the Watts Sexual Functioning Questionnaire (WSFQ); and subscales from the Cancer Rehabilitation Evaluation System (CARES). RESULTS: Eight hundred sixty-four BCS completed the survey. RAND Health Survey scores were as good or better than those of healthy, age-matched women, and the frequency of depression was similar to general population samples. Marital/partner adjustment was similar to normal healthy samples, and sexual functioning mirrored that of healthy, age-matched postmenopausal women. However, these BCS reported higher rates of physical symptoms (eg, joint pains, headaches, and hot flashes) than healthy women. Sexual dysfunction occurred more frequently in women who had received chemotherapy (all ages), and in younger women who were no longer menstruating. In women > or = 50 years, tamoxifen therapy was unrelated to sexual functioning. CONCLUSION: BCS report more frequent physical and menopausal symptoms than healthy women, yet report HRQL and sexual functioning comparable to that of healthy, age-matched women. Nevertheless, some survivors still experience poorer functioning, and clinicians should inquire about common symptoms to provide symptomatic management or counseling for these women.

Aged↗
PubMed2005

Profile of daily life in children with brain tumors: an assessment of health-related quality of life.

PURPOSE: The survival of children with CNS tumors approaches 70%, yet health-related quality of life (HRQOL) has not been investigated rigorously in this population. We aimed to show that universal assessment of HRQOL could be obtained easily by using the PedsQL 4.0 and to provide a composite profile of their daily lives. PATIENTS AND METHODS: The PedsQL was administered to all patients seen in the neuro-oncology clinic at Lucile Packard Children's Hospital (Palo Alto, CA) from December 2001, to September 2002. Patients were compared with healthy controls by using two-sided t tests to evaluate statistically significant differences. RESULTS: One hundred thirty-four patients (73 male; mean age +/- standard deviation, 11.8 +/- 5.4 years; 55 had low-grade glioma, 32 had medulloblastoma/primitive neuroectodermal tumor/embryonal tumor, 17 had malignant astrocytoma, nine had germ-cell tumor, and 21 had other types of tumors) were assessed, each in less than 20 minutes. Scores on both child and parent-proxy reports for the total HRQOL, psychosocial, physical, emotional, social, and school-functioning scales were all significantly lower than controls (P < .01). Patients with low-grade glioma were reported to have the highest total HRQOL. Children receiving radiation therapy (XRT) but no chemotherapy had significantly lower total, psychosocial, emotional, and social functioning than those receiving other treatments, including XRT plus chemotherapy. CONCLUSION: The PedsQL can be used to assess HRQOL rapidly and easily in children with CNS tumors, who have significantly worse HRQOL than healthy children. Children receiving XRT fare worse overall; chemotherapy added to XRT does not seem to worsen HRQOL. Assessment of HRQOL should be included as an outcome in future clinical trials.

Adolescent↗
PubMed2001

The "quality of life-assessment of growth hormone deficiency in adults" questionnaire: can it be used to assess quality of life in hypopituitarism?

Patients with hypopituitarism often have a multitude of physical and psychological complaints, collectively referred to as low quality of life (QoL). It has been asserted that GH deficiency (GHD) is the causative factor, and improved QoL scores have been reported during GH replacement. Qol-assessment of GHD (QoL-AGHDA) is the newest psychometric instrument with the purportedly high specificity for the issues encountered by patients with GHD. QoL-AGHDA was administered to 30 normal control subjects, 20 patients with severe GHD, and 22 patients with active acromegaly. QoL-AGHDA scores in controls (3.3 +/- 0.7) were significantly (P < 0.001) different from those in patients with hypopituitarism with unsubstituted GHD (10.6 +/- 1.5) and active acromegaly (11.6 +/- 1.6). However, QoL-AGHDA was unable to discriminate between the latter two groups, one with GHD and the other with GH excess. We conclude that as QoL-AGHDA cannot distinguish between the extremes of GH output, its ability to detect an improvement in QoL during GH replacement has to be viewed with skepticism. This can be dispelled only by double blind, placebo-controlled studies.

Adult↗
PubMed2005

A prospective study of quality of life in adults with newly diagnosed high-grade gliomas: the impact of the extent of resection on quality of life and survival.

OBJECTIVE: To describe the quality of life (QOL) over time for adults with newly diagnosed high-grade gliomas and to examine the relationship between QOL and outcome data collected in three prospective cooperative group clinical trials. METHODS: The QOL study was a companion protocol for three Phase II high-grade glioma protocols. Five self-administered forms were completed by patients to assess QOL at study entry, 2 months, and 4 months after enrollment. RESULTS: QOL data were available for baseline, first, and second subsequent follow-up evaluations for 89%, 71%, and 69% of patients, respectively. A significant proportion of patients (47.1%) experienced impaired QOL (QOL < or = 50) in at least one measure at subsequent evaluations, whereas most patients (88%) with impaired QOL at baseline continued to have impaired QOL at subsequent evaluations. On multivariable analyses, baseline QOL measures were predictive of QOL at the time of follow-up. In addition, patients who underwent a gross total resection were much less likely to have impaired QOL (P = 0.006), were less likely to experience worsening depression (P = 0.0008), and were more likely to have improved QOL (P = 0.003) at their first follow-up evaluation. Changes in QOL measures over time were not found to be associated with survival in multivariable analyses that adjusted for known prognostic variables; variables that were independently associated with improved survival were better performance status (P < 0.001), younger age (P < 0.001), and greater extent of resection (P < 0.001). CONCLUSION: Baseline QOL was predictive of QOL over time. Gross total resection was associated with longer survival and improved QOL over time for patients with high-grade gliomas.

Adult↗
PubMed2001

Quality-of-life assessment of morbidly obese patients who have undergone a Lap-Band operation: 2-year follow-up study. Is the MOS SF-36 a useful instrument to measure quality of life in morbidly obese patients?

BACKGROUND: Quality of life (QoL) was tested in a 2-year postoperative study using the Medical Outcome Study Short Form 36 (MOS SF-36) to assess preoperative and 1 and 2 year postoperative QoL among one group of female patients (group 1, n = 42) and a 2 year postoperative QoL study in a second group of female patients (group 2, n = 9) who underwent a stomach reduction operation involving open surgical placement of a Lap-Band during the year 1997. METHODS: The QoL of 42 patients (group 1) was assessed at most 20 hours before surgery and 1 and 2 years (12 and 24 months) postoperatively using a randomized pre-test/post-test design. The QoL of 9 patients (group 2) was assessed 2 years (24 months) postoperatively using a randomized post-test design only. The results were compared with the standardized Dutch norm datascale. Statistical data were analyzed with SPSS versions 10.0. RESULTS: The placement of a Lap-Band in group 1 resulted in a significant reduction in Body Mass Index (BMI) in the first and second-year follow-up. Mean BMI declined significantly from 40.7 kg/m2 preoperatively to 33.1 kg/m2 at the 1-year follow-up, to 31.3 kg/m2 at 2-year follow-up. In group 2 BMI also declined significantly from 43.0 kg/m2 preoperatively to 34.2 kg/m2 at 1-year follow-up to 32.1 kg/m2 at the 2-year follow-up. Compared to the MOS SF-36 standardized Dutch norm data, a significant improvement in the QoL was seen on the effect variable bodily pain, mental health and general health perceptions in group 1. Although the bodily pain, general health and mental health perceptions increased significantly 2 years postoperatively (group 1) compared with the Dutch standardized norm data, the preoperative general health and mental health perceptions of morbidly obese patients were, like all other preoperative effect variables, not significantly different from the scores on the Dutch standardized norm scale. CONCLUSION: Although other authors found that QoL improves after surgical-induced weight loss, showing significant improvements on patients' perception of their health status, these findings were not confirmed in the present study. The findings show only a significant difference in bodily pain, general health and mental health perception before and after surgical intervention and preoperatively in group 1 compared to the Dutch standardized norm data. Because of small sample size (n = 9), no significant results were found in group 2 compared to the Dutch Standardized norm data. Based on earlier and present findings, further study is recommended to ascertain whether the MOS SF-36 is valid in morbidly obese patients and whether the response set has an influence on QoL studies of these patients.

Adult↗
PubMed2005

Do age and comorbidity affect quality of life or PTA-induced quality-of-life improvements in patients with symptomatic pad?

PURPOSE: To elucidate whether age or comorbidity influences (1) quality of life (QoL) or (2) the gain in QoL due to percutaneous angioplasty procedures in symptomatic peripheral arterial disease (PAD) patients. METHODS: One hundred two consecutive patients (81 men; mean age 66.3+/-9.1 years, range 44-83) with symptomatic PAD (83.2% with intermittent claudication, 16.8% with chronic critical limb ischemia) were tested cross-sectionally for their self-reported QoL and degree of leg pain during walking or rest according to standardized scales. A subgroup of 48 patients with a comparable clinical profile was prospectively investigated before and shortly after angioplasty. Quantitative indices of comorbidity burden and hemodynamic parameters were also obtained. RESULTS: QoL impairment significantly increased with a greater comorbidity burden and greater degree of leg pain during exercise or at rest, but decreased with advancing age (R = 0.91, p < 0.0001, stepwise regression). The angioplasty-associated gain in QoL, however, was positively correlated with the initial degree of QoL impairment and the degree of improvement in intermittent claudication (R = 0.873, p < 0.0001, multiple regression). By contrast, neither age nor comorbidity burden adversely affected angioplasty-induced QoL improvements. CONCLUSIONS: PAD patients with higher levels of leg pain or a greater comorbidity burden generally have more pronounced QoL impairment. They can gain considerable QoL benefits from percutaneous procedures, especially if they have greater QoL impairment initially, and experience substantial improvements in exertional leg pain after treatment. In general, neither age nor comorbidity should negatively influence the decision for percutaneous therapy in symptomatic PAD patients.

Adult↗
PubMed2000

[Quality of life evaluation scale (AUQEI--Autoquestionnaire Qualité de Vie Enfant Imagé). Validity and reliability of a quality of life scale for children 4 to 12 years-old].

It should take into account the pediatric context and the child's development moment to evaluate the quality of life in childhood from a standardized instrument. We present the questionnaire AUQEI validation by its application in 353 children, between 4 and 12 years-old, obtaining a cut off point of 48, internal consistency with a Crombach's alpha of 0.71 and construct validity (r = 0.497). With these psychometrical qualities, the scale shows its importance as a diagnostic tool.

Child↗
PubMed2005

Experiencing the "good life": literary views of craniofacial conditions and quality of life.

OBJECTIVE: This article is a qualitative approach to understanding how people with craniofacial conditions see quality in their lives and how they understand the components of building a sense of well-being or goodness in their lives. Literary selections from fiction, Web sites, and first-person accounts are examined and categorized into domains and themes to offer some insight into how quality of life is built into the lives of people with craniofacial conditions. Three domains are noted: (1) a personality and psychological domain; (2) a family, work, and social interactive domain; and (3) a cultural and societal domain. Within each domain, a number of themes are noted and discussed. Quotes from affected people and their families are offered to illustrate how they respond to and alter their lives and their world views. Many adults with craniofacial conditions find ways to live with their difference and to succeed using the measures they construct.

Adaptation, Psychological↗