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PubMed2005

Life history constraints on the evolution of abbreviated life cycles in parasitic trematodes.

Abbreviations of the complex life cycle of trematodes, from three to two hosts, have occurred repeatedly and independently among trematode lineages. This is usually facultative and achieved via progenesis: following encystment in the second intermediate host, the metacercaria develops precociously into an egg-producing adult, bypassing the need to reach a definitive host. Given that it provides relatively cheap insurance against a shortage of definitive hosts, it is not clear why facultative progenesis has only evolved in a few taxa. Here a comparative approach is used to test whether progenetic trematodes are characterized by larger body size and egg volumes, two traits that correlate with other key life history features, than other trematodes. These traits may constrain the evolution of progenesis, because precocious maturation might be impossible when the size difference between the metacercaria and a reproductive adult is too large. First, trematode species belonging to genera in which progenesis has been documented were found not to differ significantly from other trematode species. Second, using within-genus paired comparisons across 19 genera in which progenesis has been reported, progenetic species did not differ, with respect to body size or egg size, from their non-progenetic congeners. Third, using intraspecific paired comparisons in species where progenesis is facultative, no difference was observed in the sizes of eggs produced by worms in both the intermediate and definitive host, suggesting that opting for progenesis does not influence the size of a worm's eggs. Overall, the lack of obvious differences in body or egg size between trematodes with truncated life cycles and those with the normal three-host cycle indicates that basic life history characteristics are not acting as constraints on the evolution of progenesis; trematodes of all sizes can do it. Why facultative progenesis is not more widespread remains a mystery.

Animals↗
PubMed2004

Quality of life: the contested rhetoric of resource allocation and end-of-life decision making.

The term"quality of life" has a long history in the bioethics literature. It is usually used in one of two contexts: in resource allocation discussions in the hope of arriving at an objective measure of the worth of an intervention; and in end-of-life discussions as a concept that can justify the forgoing of life-sustaining treatment. In both contexts, the term has valid uses as it is meant to measure the efficacy of a treatment. However, the term has the unfortunate rhetorical problem that it often seems to be a judgment on the life of a human being. As such, it is highly inflammatory. We suggest that a return to a rhetoric that suggests a judgment on the treatment rather than the person is needed.

Aged↗
PubMed2005

Quality of life in people with severe mental illness. Reliability and validity of the Manchester Short Assessment of Quality of Life (MANSA).

The Manchester Short Assessment of Quality of Life (MANSA) is a short interview, which has received a recent interest in research investigating quality of life in people with mental illness. In the present study, the Swedish version of MANSA is examined with regard to reliability, in terms of internal consistency and construct validity. Ninety-two persons with severe mental illness were interviewed regarding quality of life, social network, psychosocial functioning, psychiatric symptoms, needs for care, empowerment and experiences of stigma. Internal consistency was adequate (alpha = 0.81). Positive correlations were found between MANSA and social network, empowerment and psychosocial functioning, and negative correlations with psychopathology, number of needs for care, perceived devaluation and discrimination, and rejection experiences. Social network, psychosocial functioning and beliefs of devaluation and discrimination altogether explained 67% of the variance in quality of life. The Swedish version of MANSA showed a satisfactory reliability in terms of internal consistency. The construct of validity of the scale was satisfactory insofar as associations with validation measures were of considerable magnitude and in expected directions.

Adult↗
PubMedDate not supplied

A questionnaire study of the quality of life and quality of family life of individuals complaining of tinnitus pre- and post-attendance at a tinnitus clinic.

Tinnitus is a condition that is difficult to treat, and treatment outcomes are difficult to measure The majority of people who experience tinnitus are not troubled by it; however, the troubled minority are referred by an otorhinolaryngologist for specialist clinic help. The aim of this study was to investigate how the impact of tinnitus changes following attendance at a tinnitus clinic and to find out how acceptable the questionnaires used were for measuring recovery. Fifty-seven tinnitus sufferers completed three questionnaires covering the characteristics of tinnitus, and its effect on daily life, quality of life, and quality of family life, before and after treatment at the Nottingham Tinnitus Clinic. Questionnaires were answered at patients' homes while they were on the waiting list to attend the clinic, and again I year after their first attendance. Measures of functional and social handicap were significantly reduced following attendance at the clinic (mean change in functional handicap = 13%, p<0.01, and mean change in social handicap = 8%, p<0.01). Quality of life was significantly better after treatment at the clinic (mean visual analog scale difference = 6.5%, p = 0.01). We conclude that attendance at the Nottingham Tinnitus Clinic had a positive effect on the impact of tinnitus on patients and their families, and that the questionnaires gave an accurate measure of patient distress.

Family↗
PubMed2002

Quality of life and rehabilitation in social and professional life after autologous stem cell transplantation.

BACKGROUND: In this study, we report on quality of life (QOL) in long-term survivors after high-dose chemotherapy and autologous stem cell transplantation (ASCT) with special emphasis on rehabilitation in social and professional life. PATIENTS AND METHODS: The European Organization of Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ)-C30 questionnaire was sent by mail to 391 patients 1 to 12 years (median 31 months) after ASCT. The procedure was performed at our institution alone. Of the questionnaires 78% were returned and evaluated. RESULTS: Of the 238 patients who had an occupation and were employed, 132 (55%) have returned full time (68%) or part time (32%) to their previous occupation. A total of 139 patients (46%) received a 3- to 4-week inpatient rehabilitation treatment in specialised institutions following ASCT. Employment status post-transplantation and QOL were similar in these patients as compared with those who did not participate in rehabilitation programmes. Of the 304 evaluable patients, 39% reported physical problems that reduced their satisfaction with sex and intimacy. The general QOL was significantly reduced in the first year, improved with interval to transplant, and reached the level of the general population after 4 years. CONCLUSIONS: Our retrospective data showed that ASCT has a significant, unfavourable impact on QOL, including reintegration into social and professional life. Most symptoms and scores returned to normal after 3 to 6 years. Employment status and QOL were similar in patients who participated in a rehabilitation programme and those who did not.

Adolescent↗
PubMed2002

What impact do setting and transitions have on the quality of life at the end of life and the quality of the dying process?

PURPOSE: The aim of this article was to identify major research needs related to quality of life at the end of life and quality of the dying process for vulnerable older people at home, in assisted living facilities, in skilled nursing facilities, and in prisons. DESIGN AND METHODS: Review and analysis of the literature was used. RESULTS: The science is generally weak in relationship to what is known about quality of life at the end of life and quality of dying for vulnerable older adults in different settings. Few studies address actively dying patients and the reasons for transfers between home and other settings. Existing studies are primarily anecdotal, descriptive, have small samples, and involve a single setting. Participant decisional capacity is a barrier to conducting research in these settings. IMPLICATIONS: Research recommendations for each setting and across settings are provided. The National Institutes of Health should clarify criteria for enrollment of persons with diminished, fluctuating, and absent decisional capacity in research.

Aged↗
PubMedDate not supplied

Effect of raloxifene on quality of life: a prospective study using the Utian Quality of Life (UQOL) Scale.

OBJECTIVE: The Utian Quality of Life Scale (UQOL) is a new questionnaire used to quantify patient perception of quality of life in postmenopausal women. The current study is the first to use the UQOL in ascertaining treatment effects on quality of life in postmenopausal women. DESIGN: This was a randomized, double-blind, placebo-controlled study of healthy postmenopausal women. Participants were randomized to raloxifene 60 mg/day or placebo. Participants completed the UQOL at baseline, at 3 months, and at the 6-month study endpoint. RESULTS: A total of 74 women (mean age, 55.6 years) were randomized. In the overall population, there were no significant changes from baseline to 6 months within or between treatment groups in any of the domains or total score, although raloxifene was associated with positive changes from baseline in the occupational (P = 0.093) and health (P = 0.055) domains. In women who completed the study, raloxifene was associated with a significant improvement from baseline in the occupational (P = 0.041) and health (P = 0.025) domains and in the total score (P = 0.044), whereas placebo had no effect. There were no statistically significant differences between raloxifene and placebo in any of the domains or total score. CONCLUSION: Although there were no treatment group differences, raloxifene was associated with an improvement from baseline in the occupational and health domains and in the overall score of the UQOL. Larger studies are needed using the UQOL as a primary endpoint to determine whether the positive effects of raloxifene on quality of life observed in this trial are real or a chance finding.

Adult↗
PubMed2004

Age-related macular degeneration and quality of life: how to interpret a research paper in health-related quality of life.

PURPOSE OF REVIEW: To review how to critically appraise a research article pertaining to changes in health-related quality of life (HRQoL) related to interventions for age-related macular degeneration (AMD). RECENT FINDINGS: We searched PubMed using a strategy that combined the text-words, "macular degeneration" and "quality of life" (n = 73; January 17, 2004), while limiting the search to "clinical trials" (n = 6; of which 3 were published within the past year). A randomized clinical trial evaluating the efficacy of self-management as an intervention for AMD has been selected to introduce the reader to the concept of how to critically review a research paper pertaining to HRQoL in AMD. Other pertinent articles used in this review include recent results published from the Age-Related Eye Disease Study and the Submacular Surgery Trial. SUMMARY: The NEI-VFQ is a reliable, valid, and responsive tool when applied to patients with AMD. Self-management of patients with AMD has been demonstrated to improve their HRQoL by way of an internally valid randomized clinical trial. In this issue of Current Opinion in Ophthalmology, we confront the issue of how to assess the validity and importance of a research paper pertaining to the issue of quality of life. To introduce this topic, we will present a real world clinical example to better understand how quality of life may aid in medical decision making.

Clinical Trials as Topic↗
PubMed2003

Measurement of quality of life VII. Statistical covariation and global quality of life data: the method of weight-modified linear regression.

Existing standard statistical procedures do not seem to fulfill the needs of the researcher in global quality-of-life (QOL) research, because the most interesting question seems to be the exact size of statistical covariations. A method is necessary if we are to isolate the most important factors connected to quality of life among the thousands of possible factors in life. We have developed a new procedure we call "weight-modified linear regression". Unfortunately as demonstrated in the discussion, the procedure is not totally without problems and weaknesses. In spite of the critique, we believe the procedure to be valid for the purpose of estimating the size of the covariation in population studies including psychometric measures of global quality of life. As we need to be certain that the procedure is valid, we hereby invite the scientific community to give us further critique of the method and suggestions for its improvement.

Humans↗
PubMed2002

Life cycle emission distributions within the economy: implications for life cycle impact assessment.

Refinements of methods for life cycle impact assessment (LCIA) are directed at removing unjustified simplifications and quantifying and reducing uncertainties in results. The amount of uncertainty reduction that is actually achieved through LCIA method refinement depends on the structure of the life cycle inventory model. We investigate the general structure of inventory models using an economic input/output (I/O) life cycle assessment model of the U.S. economy. In particular, we study the results of applying a streamlining algorithm to the I/O LCA model. The streamlining algorithm retains only those "branches" of the process tree that are jointly required to account for a specified fraction of the total impacts upstream of each point in the tree. We examine the implications of these "tree pruning" results for site-informed LCIA. Percentiles are presented for U.S. commodities and several important pollutants, for the share of total upstream emissions contributed by the set of processes in each supply tier, that is, each set of processes that directly supply inputs to another set of processes Capturing at least 90% of the total direct plus upstream emissions for criteria air pollutants and toxic releases for at least 75% of the commodities in the U.S. economy requires full modeling of direct emissions plus the first five supply tiers. The requirements for capturing a high percentage (e.g., >80%) of total emissions vary widely across products or commodities. To capture more than 60% of total emissions for more than half of all commodities requires models with more than 4,000 process instances. To well characterize the total impacts of products, life cycle impact assessment methods must characterize foreground process impacts in a site-informed way and mean impacts of far-removed processes in an unbiased way.

Air Pollutants↗
PubMed2005

Assessment of quality of life in patients with uncontrolled vs. controlled acromegaly using the Acromegaly Quality of Life Questionnaire (AcroQoL).

OBJECTIVE: Acromegaly is a chronic disease with an important impact on quality of life. An acromegaly disease-generated quality of life questionnaire (AcroQoL) has recently been developed. We aimed to confirm reliability, construct validity and disease-specificity of the AcroQoL questionnaire. Second, we investigated the effect of remission status on health-related quality of life (HRQoL) in patients with acromegaly. DESIGN AND PATIENTS: Using a prospective, cross-sectional design, 33 patients with treated acromegaly and 22 patients with treated hormone-inactive pituitary adenoma under stable replacement therapy completed the German version of the AcroQoL questionnaire. MEASUREMENTS AND RESULTS: Cronbach's alpha analysis showed high reliability of the total score and the different scales and subscales in patients with acromegaly (alpha ranging from 0.83 to 0.93, item-total correlation 0.41-0.84). Patients with hormone-inactive pituitary adenoma showed lower reliability (alpha ranging from 0.17 to 0.75). Exploratory factor analysis in patients with acromegaly suggested a two-factorial solution with item distribution largely matching the scaling of the original Spanish questionnaire. Multiple regression analysis revealed significantly lower results of the total score and the different scales and subscales (indicating worse HRQoL) in patients with persistent acromegalic activity compared to patients with acromegaly in remission or discordant remission status. Consistently, IGF-I was an independent negative predictor of the different scores of the questionnaire. CONCLUSIONS: The AcroQoL questionnaire represents a reliable, construct valid and disease-specific tool for assessing health-related quality of life in patients with acromegaly. Patients with biochemically uncontrolled acromegaly showed significantly lower HRQoL than patients with acromegaly in remission or discordant remission status.

Acromegaly↗
PubMed1996

Life after the mental hospital: the way of life of deinstitutionalized psychiatric patients.

This article describes and analyses the way of life of deinstitutionalized long-term psychiatric patients in Northern Finland. The major focus of the paper is the central areas of life of the outpatients as one dimension of subjectivity. The data were collected by interviewing 25 discharged long-term psychiatric patients. The findings suggest that home was the central area of life for the outpatients but they differed in their relation to it. Some of the patients were actively building their home. For some others home was an asylum in which to hide from social life. Many patients had hobbies that only took place inside their homes. One of the problems that the outpatients had to face was lack of work. The elderly patients who generally regarded work as a virtue experienced difficulties in finding something to do in their modern suburban homes. Social participation was mostly labelled by the old and familiar hospital models. The patients had no new acquaintances. They kept contact with their former fellow patients.

Adaptation, Psychological↗
PubMed2005

A new tool to evaluate the impact of chronic urticaria on quality of life: chronic urticaria quality of life questionnaire (CU-QoL).

BACKGROUND: Health-related quality of Life in patients with chronic urticaria is evaluated by mean of generic instruments or questionnaire designed for skin diseases. No disease-specific tool is now available for the assessment of chronic urticaria impact from patients' viewpoint. OBJECTIVE: The aim of our study is to develop and validate a new questionnaire specifically designed for the assessment of quality of life in chronic urticaria (Chronic Urticaria Quality of Life Questionnaire -- CU-Q(2)oL). METHODS: In the development phase of CU-Q(2)oL an initial list of items of 37 items was compiled and given to 80 patients with chronic urticaria; the 23 most significant items were selected and converted into questions evaluating the answers on a Likert scale of five steps. The validation procedure involved 125 patients (86 F and 39 M) (age 42.17 +/- 9.24 years). RESULTS: Following a statistical analysis, CU-Q(2)oL showed a six-dimensional structure and good levels of internal consistency for the extracted factors: Pruritus (0.79), Swelling (0.65), Impact on life activities (0.83), Sleep problems (0.77), Looks (0.83) and Limits (0.74). In stable conditions CU-Q(2)oL showed a good reliability, ranged between 0.64 and 0.92. Responsiveness to clinical changes was accomplished. DISCUSSION: These results provide evidence that CU-Q(2)oL has specificity enough for being a valid tool for detecting the relative burden of CU on subjective wellbeing, and for obtaining a global evaluation both of CU impact and of treatments, taking into account the patient's point of view. The CU-Q(2)oL was easily and quickly filled up and well accepted by the patients.

Adult↗
PubMed2006

Treatment of paediatric atopic dermatitis with pimecrolimus (Elidel, SDZ ASM 981): impact on quality of life and health-related quality of life.

AIM: To report on quality of life (QoL) and health-related quality of life (HRQL) impacts of pimecrolimus (Elidel, Novartis A.G., Basel, Switzerland, SDZ ASM 981) 1% cream in the long-term treatment of paediatric atopic dermatitis. METHODS: QoL and HRQL data are presented from two 12-month international clinical trials evaluating the efficacy and safety of pimecrolimus 1% cream. Both trials were randomized and double blinded and compared two treatment strategies, one involving the use of emollients, pimecrolimus and topical corticosteroids, the other is 'usual care' (emollients plus topical corticosteroids) with a vehicle cream to maintain study blinding. The first trial (the infant trial) involved patients between ages 3 months and 2 years, whereas the children trial included patients aged 2-17 years. In both trials, QoL of the affected child's parent was evaluated with the parent's index of quality of life in atopic dermatitis (PIQoL-AD). HRQL was assessed in the children trial only with the children's dermatology life quality index (CDLQI). QoL and HRQL assessments were conducted at baseline, 6 weeks, 6 months and 12 months. RESULTS: Generalized linear modelling of PIQoL-AD scores at each post-baseline visit showed a greater impact on parent's QoL for pimecrolimus compared with control at all time-points in both trials. HRQL scores showed a greater improvement from baseline for children in the pimecrolimus group compared with those in the control group at all time-points. CONCLUSIONS: The results show a beneficial impact of pimecrolimus on parents' QoL in paediatric atopic dermatitis, confirming findings from earlier shorter term trials. There was also a clear benefit to the HRQL of the children treated.

Administration, Cutaneous↗
PubMedDate not supplied

Dialysis: prolonging life or prolonging dying? Ethical, legal and professional considerations for end of life decision making.

There are over 7,000 people on dialysis in Australia and this is predicted to increase due to the ageing population and the high incidence of diabetes mellitus. Discontinuation of dialysis is the second most frequent cause of death in dialysis patients in Australia. Risk factors for the discontinuation of dialysis include: co-morbidities (especially diabetes mellitus) and being older. Because the decision to discontinue dialysis is a major life choice, collaborative decision making should be encouraged, and the patient needs assurances of the continuation of care and kindness, a palliative care plan, and the alleviation of suffering. Patients decide to discontinue dialysis because of an unacceptable quality of life, depression and a chronic failure to thrive. Health professionals need to support end of life decision making using an ethical decision framework. A review of current literature was undertaken and revealed a paucity of information in regard to palliation in those with end stage renal disease who had discontinued dialysis. The fear of dying, pain, suffering, and abandonment that a patient and/or their family may perceive as being associated with death may create barriers to decisions to discontinue with dialysis treatments. Therefore health care personnel should provide information with honesty to allow patients to predict their quality of life and death. Support for the patient and family during the dying period should be multi-disciplinary, with clear and timely communication between all members of the team.

Advance Care Planning↗
PubMedDate not supplied

Quality of life in animals as a new outcome for surgical research: G-CSF as a quality of life improving factor.

Sepsis is still a major problem in human medicine with a high mortality rate. Nearly all attempts to improve the outcome of septic patients with immune modulators failed. In most of these trials only mechanistic endpoints such as mortality rate, complication rate, cytokine levels and physiological parameters were assessed. Only in a very few trials quality of life had been chosen as primary endpoint. In basic research and especially in animal experiments in the field of sepsis and oncology, only molecular investigations which explain drug and treatment interactions were in the focus of the scientific community. Animal models simulating clinical complexity and investigating outcomes like quality of life were very rare. The aim of this study was to demonstrate alterations in sickness behaviour -- the animal equivalent to quality of life in man -- in rats as a response to sepsis after prophylaxis with G-CSF and antibiotics. Sickness behaviour was assessed by measurement of core body temperature, food and water intake, locomotor activity and circadian rhythm of these parameters. Complex animal experiments in rats were performed including anaesthesia, antibiotic and cytokine (G-CSF) prophylaxis, volume substitution, laparotomy, contamination and infection with human faecal suspension and postoperative analgesia. In group A (sham) and D (antibiotic + G-CSF) the mortality rate was 0%, but in group B (no prophylaxis) 33% (3/9) and in group C (antibiotic prophylaxis) 11% (1/9) of the animals died. Before infection all rats showed clear circadian patterns of locomotor activity and body temperature with physiologically higher values during the night-time. Immediately after operation and infection temperature increased, water and food intake, locomotor activity decreased and circadian rhythms were lost. Body temperature and water consumption were already normalised at day 2 after infection in all groups. Normal food intake was re-established in group C and D at day 3 while one more day was needed for recovery in Group C. Restoration of locomotor activity occurred in group D at day 5, in group C at day 7. In group B locomotor activity remained suppressed during the whole observation period of 8 days postoperatively. In conclusion, in septic rats sickness behaviour, an equivalent to quality of life in humans, is improved rapidly by a prophylaxis with G-CSF in combination with antibiotics and can be used as a new outcome in preclinical surgical research.

Animals↗
PubMed2003

Life situation, coping and quality of life in people with high and low risk of developing Alzheimer's disease.

The psychosocial consequences of being at different risk for inheriting Alzheimer's disease (AD) were investigated in a high-risk group (n = 106) and a low-risk group (n = 37). Non-affected individuals from families with AD in two or more generations answered questions about their life situation, quality of life and coping. Their answers were compared with a population sample (n = 408). The high-risk group assessed the quality of their personal relationships and everyday life higher than did the population sample. They also used less emotive and supportive coping strategies compared with the population sample. Nearly 90% in the high-risk group felt anxiety concerning their own risk or the risk of their children and grandchildren of developing AD. About 50% of the respondents complained about a lack of information. The pieces of information they asked for were early signs of the disease, treatment, and practical information on how to handle everyday life with an affected relative.

Adaptation, Psychological↗
PubMed1998

Effects of acupuncture treatment on daily life activities and quality of life: a controlled, prospective, and randomized study of acute stroke patients.

BACKGROUND AND PURPOSE: A number of studies have indicated that acupuncture might improve the functional recovery of stroke patients. These studies vary in inclusion criteria, sample size, and evaluation methods. The present study was designed to investigate whether electroacupuncture treatment favorably affects stroke patients' ability to perform daily life activities, their health-related quality of life, and their use of health care and social services. METHODS: One hundred four consecutive patients >40 years of age admitted to hospital because of an acute stroke were randomized to 3 groups: deep, superficial, and no acupuncture treatment. The acupuncture treatment given by 4 physiotherapists started 4 to 10 days after randomization and was given twice a week for 10 weeks. All patients underwent conventional stroke rehabilitation as well. Two occupational therapists, blinded regarding the patients' allocation, evaluated the treatment effects. The assessments were performed 4 times during the first year after randomization by means of interviews and observations. RESULTS: There were no differences between the groups with reference to changes in the neurological score and the Barthel and Sunnaas activities of daily living index scores after 3 and 12 months. Regarding the Nottingham Health Profile, the no acupuncture group had somewhat fewer mobility problems. No differences in health care and social services were found between the groups. CONCLUSIONS: The present study does not give support to the previous studies, which indicates that acupuncture treatment may have a beneficial effect on acute stroke patients' ability to perform daily life activities, their health-related quality of life, and their use of health care and social services.

Activities of Daily Living↗