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PubMed1996

Measurement of quality of life in women with breast cancer. Development of a Life Satisfaction Questionnaire (LSQ-32) and a comparison with the EORTC QLQ-C30.

The purpose was to develop and validate a new instrument suitable for measuring perceived quality of life in women with breast cancer. The instrument is to be used within conventional cancer therapy as well as in complementary care, and is called the LSQ-32 (Life Satisfaction Questionnaire). The subjects were 362 women with breast cancer in all cancer stages. Cronbach's alpha reliability coefficient of the LSQ was 0.89. The construct validity was estimated by a principal component analysis. Six orthogonal factors were identified: (1) 'Quality of family relation', (2) 'Physical symptoms', (3) 'Socioeconomic situation', (4) 'Quality of daily activities', (5) 'Sickness impact' and (6) 'Quality of close friend relation'. The criterion-related validity was estimated by comparing the LSQ-32 and the EORTC QLQ-C30. The scales/items of the EORTC QLQ-C30 were represented in the LSQ-32, but the factors 'Quality of family relation' and 'Quality of close friend relation' were not found in the EORTC QLQ-C30. It was concluded that the LSQ-32 as well as the EORTC QLQ-C30 are valuable tools in the measurement of quality of life in women with breast cancer. The LSQ-32, however, also contains an existential factor.

Adult↗
PubMed1994

The change of life, the sorrow of life: menopause, bad blood and cancer among Italian-Australian working class women.

This paper explores the discourse of menopause, health and illness among 20 middle aged Italo-Australian working class women living in Melbourne. Using the methods of interpretative anthropology and the perspectives of critical feminist theory, I argue that women's discourse about health and illness is one way in which they express feelings of loss over the fertility of their youth, ambivalences about their lives in Australia, and grief over a life left behind in Italy. These losses are experienced physically and expressed metaphorically through conditions of bad blood and nerves and are perceived to contribute to their vulnerability to a range of diseases including cancer. For these women, the change of life is experienced as the end of life and their fear of cancer is representative of their fears of social and physical death. Cancer is also seen to be a disease more common in Australia and is used as a metaphor for expressing anxieties relating to feelings of placelessness, of being disconnected from one's roots, and anxieties about becoming old and dying far from "home."

Adult↗
PubMed1995

The quality of life in adult female patients with congenital adrenal hyperplasia: a comprehensive study of the impact of genital malformations and chronic disease on female patients life.

Female patients with congenital adrenal hyperplasia have been frequently studied in order to determine the impact of prenatal androgen exposure on various aspects of psychological, psychosocial and psychosexual development. There is no published study to evaluate the impact of the genital malformation, genital operations and chronic medication on the quality of life in adult females with congenital adrenal hyperplasia. We performed a quality-of-life evaluation in adult female patients with congenital adrenal hyperplasia due to a 21-hydroxylation defect. The patients were asked to fill out questionnaires covering the four domains of health-related quality of life, namely physical state, psychological well-being, social relationships and functional capacity as well as questionnaires covering the areas of psychosexual identification and psychosocial integration. In addition a semistructured interview was performed covering medical history as well as physical, emotional, social and psychosexual development. The results were evaluated using a computerized statistical program for social sciences. Forty-five patients agreed to participate (44 could be interviewed) and their medical data did not differ from the 20 patients (medical data were available from 16 patients) who refused to participate. Median age at diagnosis was below 1 year in 54.8 of the participating patients; range was from 0 to 30 years. Of the participants, 48.6%, 34.2% and 17.2% suffered from the simple-virilizing-, salt-wasting-, and late-onset-form of congenital adrenal hyperplasia, respectively. The mean adult height was 157.8 cm, and mean weight was 56.8 kg. In 35.7% the degree of genital virilization was classified as Prader stage 3 or 4.(ABSTRACT TRUNCATED AT 250 WORDS)

Adrenal Hyperplasia, Congenital↗
PubMed1991

Nursing home care: factors influencing the quality of life in a restricted life situation.

The quality of life and care situation of 191 patients living in 4 nursing homes (NHs) were evaluated with regard to patient functional impairment and staff competence. Patient disability levels in the different NHs were similar. A high incidence of dementia in combination with somatic diseases were limitations to achieve quality of life. The patients had limited access to privacy. Their possibilities to communicate with the world outside, interpersonally, and via mass-media were small. Only about half of them went out of the NHs during their mean stay of 1.8 years, but they were often visited by relatives and friends. The staff seemed to be indifferent to the patients' needs, which was reflected in insufficient physical and mental training, bad mealtime routines and only a minute of time allowed for personal acquaintance at admittance. The competence of the nursing staff and their working in a nursing team seemed to be of major importance in the care situation for the quality of life available. It was evident that there was a great need to improve the care situation.

Activities of Daily Living↗
PubMed2002

Measurement of quality of life in head and neck cancer patients utilizing the quality of life radiation therapy questionnaire.

BACKGROUND: Quality of life (QOL) measures give patients the possibility to express subjective changes in wellbeing. We aimed to translate the radiation specific quality of life questionnaire (QOL-RTI) and the companion head and neck module (H&N) questionnaire into German and to test its reliability, validity and sensitivity. PATIENTS AND METHODS: After translation and final revisions based on qualitative interviews with ten patients, 97 head and neck cancer patients were screened for eligibility. Patients answered the 38 items questionnaire at baseline and twice in week 4 of radiotherapy for test-retest reliability. Internal consistency was calculated using Chronbach's alpha. Patients also completed the functional assessment of cancer tool plus head and neck (FACT-G plus H&N) for concurrent validity. Item analyses were performed to test the sensitivity. RESULTS: Chronbach's alpha yielded alpha = 0.85 for the QOL-RTI and alpha = 0.80 for the H&N module, test-retest reliability scores were r = 0.87 and r = 0.83, respectively. The correlation of the QOL-RTI plus H&N and the FACT plus H&N was r = 0.79. Questionnaire sensitivity was supported by significant changes in the mean score of 45.8% of the QOL-RTI items and 78.6% of the H&N items between baseline and week 4 of radiotherapy. CONCLUSIONS: The German version of the QOL-RTI was shown to be a reliable, valid and sensitive tool to assess the quality of life of patients undergoing radiotherapy. The H&N module is useful for patients undergoing treatment for head and neck cancer.

Adult↗
PubMed2007

[The RHINASTHMA-Quality of Life Scale German Adapted Version: validation of a new disease specific quality of life scale for patients suffering from allergic rhinitis and bronchial hyperreactivity].

BACKGROUND: In 2003 Baiardini et al. presented the RHINASTHMA questionnaire, which measures the impairment of quality of life in patients with rhinitis and asthma and takes the "united airway disease" model into its account. The aim of our study was to create a valid version of this questionnaire adapted for use with German-speaking subjects. METHODS: Datasets recorded for 85 patients were analysed for sensitivity, reliability and validity of the new questionnaire. For this purpose, as well as the symptom scores, disease-specific and generic quality of life questionnaires were also used as a measure of validity. RESULTS: A correlation analysis and Cronbach's alpha indicated that the RHINASTHMA scale is satisfactory from the aspect of reliability. Good validity was also shown in terms of discrimination and agreement for all items and scores. In addition, all the observed parameters reacted sensitively to clinical improvements of the health status. CONCLUSION: The RHINASTHMA questionnaire makes it possible to determine how badly the quality of life is impaired by rhinitis and asthma, based on the paradigm of "united airway disease".

Adolescent↗
PubMed2001

[Quality of life stress in patients with larger tumors of the mouth. A descriptive study of psychosocial effects of illness and primary surgery therapy in 3 parts--1: Quantity and quality of life].

Up to about 40 years ago, the therapy of large tumors of the oral cavity often resulted in severe disfigurement and dysfunctions. Modern resection and reconstruction techniques now enable tumors of this type to be removed in such a way that virtually normal eating and speech functions are restored and traces of the extensive surgery are barely noticeable in many patients. After rehabilitation, most of these patients seem objectively to have a high quality of life, but it is less clear whether their subjective experience is the same. In a three-part empirical study the "limitations of quality of life" (LQL) of 50 patients with large tumors of the oral cavity were investigated at four points of time: preoperatively as well as 1, 4 and 12 months postoperatively. Our self constructed questionnaire for LQL includes 241 questions covering 19 fields of limitation. The results were compared with those of a group of patients after total laryngectomy (n = 34) and a group of patients "without cancer" (n = 40). One year after surgery the limitations of quality of life of patients with large tumors of the oral cavity are still large but seem less so than those of patients after total laryngectomy. However, objectively marginal problems such as a change of body image through a minor disfigurement, slightly indistinct articulation, or a prolonged period of accustomization to dentures are experienced as a severe strain by many patients. The apparent hypersensitivity of many patients to minor discomfort is seen as an effect of the demands made by modern society for fast, subtle adaptive processes. The second part of the study deals with the coping strategies applied by patients, and the third part is focused on a search for variables which could serve as preoperative indicators of the individual ability to bear the burden of illness and therapy.

Activities of Daily Living↗
PubMed2000

Quality of life in psychiatry: a systematic contribution to construct validation and the development of the integrative assessment tool "modular system for quality of life".

The aim of the present study is to contribute to an ongoing validation process of the Quality of Life (QoL) construct in the clinical field by investigating its internal structure. Eight (inter)nationally validated questionnaires have been analyzed by an integrative approach in a multicenter study. Data has been collected in a mentally healthy (n = 479), a depressed (n = 171) and a schizophrenic (n = 139) sample. Apart from conventional psychometric criteria a similarity structure analysis (SSA) within a facet analytic methodology has been applied. A dimensional structure of the resulting integrative questionnaire "Modular System for Quality of Life" (MSQoL) could be generated that consists of one "G-factor" (life in general) and six specific dimensions (physical health, vitality, psychosocial relationships, material resources, affect, leisure time). This basic structure represents a core module measured by 47 items which is sufficiently valid for all three samples. The empirical structures of healthy, depressed and schizophrenic samples fulfill the first law of attitude and share a common variance of 95%. In addition, there are four specific modules (demography, family, partnership, profession). No specific modules could be identified for the psychopathological subgroups. The conclusion can be drawn that QoL is construed very similar by all three investigated populations which is the base for searching for quantitative differences and profiles. The MSQoL integrates the non-redundant components of eight QoL-instruments, is psychometrically able to assess the basic structure and can be completed within a cumulative research design by items specific for a particular setting.

Adolescent↗
PubMed2005

Quality of life of testicular cancer survivors and the relationship with sociodemographics, cancer-related variables, and life events.

GOALS OF WORK: The aim of this study was to (1) assess the quality of life (QoL) of testicular cancer survivors (TCSs) by comparing them to a reference group; (2) investigate the relationship between the QoL of TCSs and sociodemographics, cancer-related variables, and life events; and (3) identify TCSs at risk for an impaired QoL. PATIENTS AND METHODS: Of the TCSs approached, 50% (n=354) participated and completed a generic QoL questionnaire (RAND-36) once. Time since completion of treatment varied from 3 months to 24 years. MAIN RESULTS: (1) TCSs had significantly higher mean scores on the subscales physical functioning (p=0.02) and pain (p=0.001), but lower mean scores on mental health (p=0.04) and vitality (p<0.001) than a reference group of men. The effect sizes of these differences were small to insignificant. (2) Employment status and chronic disease were the main correlates of the QoL of TCSs. Age, negative life events, type of treatment, and the experience of a second cancer event were moderately associated with some subscales as well. (3) The joint burden of unemployment and a chronic disease was the strongest predictor for an impaired functioning. CONCLUSIONS: On a group level, TCSs experience a good QoL, but a small group appeared to be at risk for an impaired functioning, namely, those who were unemployed and had a chronic disease. The variance explained by the variables studied was low, indicating that more important predictors remain to be identified.

Activities of Daily Living↗
PubMed2005

Quality of life and life satisfaction in patients with Behçet's disease: relationship with disease activity.

Quality of life (QoL) and life satisfaction (LS) are important outcome factors in chronic inflammatory conditions such as Behçet's disease (BD). The aim of this study was to investigate QoL and LS in patients with BD and determine the relationship with disease activity. Forty-one patients with BD and 40 control subjects were involved in the study. Demographic properties were obtained. Disease activity was assessed by Turkish version of BD Current Activity Form (BDCAF) in BD patients. QoL and psychological well-being were assessed by Nottingham Health Profile (NHP) and Life Satisfaction Index (LSI), respectively, in both patients and control groups. The related disease activity measures of QoL and LS were determined. Twenty-two male and 19 female BD patients with a mean age of 33.3+/-9.3 years and 20 male and 20 female control subjects with a mean age of 33.3+/-4.1 years were involved. According to BDCAF, no patient had central nervous system involvement. Thirty-four patients had headache, 33 patients had fatigue, 30 patients had articular involvement, 29 had mucocutaneous lesions, 27 had gastrointestinal involvement, 21 patients had ocular involvement, and 7 patients had vascular involvement. The scores of all dimensions of NHP were significantly higher and the mean score of LSI was significantly lower in BD patients than in control subjects (p<0.001). Correlation analysis indicated that the scores of fatigue, joint involvement, and oral ulcers were the most related factors for physical domains of NHP, whereas joint involvement and genital ulcers were the most related activity measures for psychosocial subscales of NHP. LS was found to be most related with the scores of patient's and physician's impression of disease activity and joint involvement. In conclusion, patients with BD have impaired QoL and disturbed psychological well-being. Current management strategies focusing on fatigue, arthralgia, mucocutaneous lesions, and efforts to measure psychosocial aspects and symptoms of the patients by their point of view will help to improve QoL and raise the LS in patients suffering from BD.

Adult↗
PubMed2004

Cross-life stage and cross-generational effects of gamma irradiations at the egg stage on Drosophila melanogaster life histories.

The long-term effects of X-irradiation with 0.25, 0.5, 0.75 and 1 Gy of 1 h eggs on the fitness-related life history traits in adult Drosophila melanogaster fruit flies and their offspring were investigated. Following irradiation with 0.25, 0.5 and 0.75 Gy, both F0 and F1 flies have decreased adult body weight and increased locomotor (photo- and geotactic) activity, whereas metabolic rate measured as the rate of CO2 production was unchanged or even increased, and female fecundity was slightly reduced compared to appropriate controls. In some cases, irradiation resulted in hormetic effects increased resistance to both starvation and heat shock stresses as well as life extension. An explanation of the beneficial long lasting effects induced by early irradiation is offered, which suggests that these effects are due to cross-life stage and cross-generational adaptive phenotypic plasticity.

Animals↗
PubMed2006

The Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR): a measure of health-related quality of life and quality of life for patients with pulmonary hypertension.

OBJECTIVE: No outcome measures specific to pulmonary hypertension (PH) currently exist. The aim of the study was to develop health-related quality of life (symptoms and functioning) scales and a quality of life scale that would allow comprehensive, accurate and valid patient-reported outcome assessment in clinical studies. METHODS: The content of the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) was derived from qualitative interviews conducted with 35 patients. Item reduction was based on the analysis of responses to a postal survey (n=75) and patient interviews (n=15) designed to determine face and content validity. A final postal validation study (n=91) was performed to determine reproducibility and construct validity. RESULTS: The questionnaire was well received by participants who found it to be relevant, comprehensible and quick and easy to complete. Rasch and factor analyses were conducted to ensure unidimensionality of the final CAMPHOR scales; Overall symptoms (made up of Energy, Breathlessness and Mood subscales), Functioning and Quality of life. The CAMPHOR scales had good internal consistency (alpha=0.90-0.92) and reproducibility (test-retest correlations=0.86-0.92). They also exhibited convergent, divergent and known groups validity. CONCLUSIONS: The CAMPHOR is a valuable new instrument for assessing patient-reported outcome in PH clinical trials and routine practice.

Activities of Daily Living↗
PubMed1996

Quality of life in elderly patients with recurrent major depression: a factor analysis of the General Life Functioning Scale.

Quality of life profiles measured by the General Life Functioning (GLF) Scale were examined in elderly patients with recurrent major depression, before and during combined treatment with nortriptyline and interpersonal psychotherapy. The study group included 110 patients, 91 recovered and 19 nonrecovered, aged 60 to 80 years, suffering from at least their second lifetime episode of major depression. Repeated measures analysis of covariance (with Hamilton and Beck depression scores as time-dependent covariates) was used to compare the temporal course of overall GLF scores for the recovered and the nonrecovered groups. Factor analysis was used to examine whether the GLF Scale yielded an overall score and measured specific aspects of well-being and coping. There were significant differences in the overall GLF scores between recovered and nonrecovered patients, with the differences increasing from week 8 of treatment onward. Analysis revealed significant improvements in quality of life, as measured by overall GLF scores, over the course of treatment in both recovered and nonrecovered patients. Even when changes in Hamilton and Beck depression ratings were controlled for in the statistical analysis, improvements in GLF scores were found to be greater in recovered than in nonrecovered patients. Thus, the GLF measures more than change in level of depression. Its overall score also has high internal reliability.

Adaptation, Psychological↗
PubMed1996

Determination of half-life for mRNA expressed in few copies and with short life.

Determination of stability of mRNA expressed in low abundance and with short life requires a sensitive method for detection and an accurate measurement of mRNA level. The method described here meets both of these criteria. An uniformly labeled single-stranded probe with high specific activity was used for the increased sensitivity in detection and quantitation of mRNA. The levels of mRNA were normalized with an invariant mRNA specie with longer half-life under the same experimental conditions in the same cells. These modifications may be helpful for situations where measurement of mRNA half-life for short-lived few copies of mRNA is necessary.

Animals↗
PubMed2006

Modified Dermatology Life Quality Index as a measure of quality of life in patients with filarial lymphoedema.

The quality of life (QoL) and correlates of the QoL of lymphoedema patients attending filariasis clinics and a hospital outpatient department were studied using a Life Quality Index (LQI) in a region endemic for Bancroftian filariasis in Sri Lanka. The index was derived by modifying a previously validated Dermatology Life Quality Index (DLQI) to focus on the oedematous limb rather than the skin. The index was scored from 0 (normal) to 30 (severely affects QoL). Lymphoedema was graded using criteria recommended by the WHO. Another semi-structured questionnaire was used to assess the patient's socioeconomic status, frequency of acute adenolymphangitis attacks (ADLA) and measures practiced for morbidity control. Ninety-one patients (62 females, 29 males; mean age 50.4 years) were studied. A single lower limb, both lower limbs or a single upper limb were affected in 78 (85.7%), 10 (11.0%) and 3 (3.3%) patients, respectively. The severity of lymphoedema ranged from stage 1 (mild) to stage 6 (severe). The mean LQI was 8.2 (SD 5.2, range 0-20). The modified DLQI scores showed a significant positive correlation with severity of lymphoedema and a negative correlation with age (R=0.59 and R=-0.1, respectively). The frequency of ADLAs correlated with an increased modified DLQI score. Local pain, embarrassment and limitations of physical activities were the most distressing aspects of lymphoedema. Disease severity and early onset lymphoedema were found to be significantly associated with poorer QoL in filarial lymphoedema.

Activities of Daily Living↗
PubMed1999

Modifiable factors associated with improved cardiac arrest survival in a multicenter basic life support/defibrillation system: OPALS Study Phase I results. Ontario Prehospital Advanced Life Support.

STUDY OBJECTIVES: This study was conducted to identify modifiable factors associated with survival for prehospital cardiac arrest in a large, multicenter EMS system with basic life support/defibrillation (BLS-D) level of care. METHODS: This observational cohort study constitutes Phase I of the 3-phase Ontario Prehospital Advanced Life Support (OPALS) Study. Included were all adults who had cardiac arrest before EMS arrival in 21 urban/suburban communities that operate under the jurisdiction of 1 ambulance services branch, have 911 telephone service, and provide ambulance defibrillation but no prehospital advanced life support (ALS). Central dispatch and ambulance records were reviewed according to the Utstein guidelines. Associations between multiple patient and EMS factors and survival to discharge were assessed by univariate then stepwise logistic regression analyses. RESULTS: From January 1, 1991, to January 31, 1995, 5,335 eligible patients were treated. Of these, 46.8% of cardiac arrests were witnessed by citizens, 14.5% received bystander CPR, 25.6% received CPR by fire or police, and 38.2% had an initial rhythm of ventricular fibrillation/ventricular tachycardia (VF/VT). The mean interval from call received to vehicle stopped was 6.7 minutes. Survival was 3.5% overall and 8.8% for VF/VT. Multivariate analysis found the following factors to be independently associated with survival (odds ratio with 95% confidence intervals): age.81 (. 73,.89), bystander-witnessed arrest 4.05 (2.78, 5.90), bystander CPR 2.98 (2.07, 4.29), CPR by fire or police 2.20 (1.46, 3.31), and response interval call received to vehicle stopped.76 (.71,.82). CONCLUSION: This represents the largest multicenter BLS-D study of prehospital cardiac arrest yet conducted and clearly indicates that patient survival may be improved by optimization of EMS response intervals, bystander CPR, as well as first-responder CPR by fire or police.

Adolescent↗
PubMed1991

Evaluation of quality of life in clinical trials. Selecting quality-of-life measures.

The strategy for evaluating quality of life in clinical trials is an important and complex issue. By comparing the performance of different quality-of-life measures before and after estrogen replacement therapy, it was shown that disease-specific measures had obvious advantages. Although narrow in applicability to the particular patient group, they were the most responsive measures in detecting small, clinically important changes. In clinical trials more attention should be given to how side effects, which often have important implications with regard to quality-of-life, are recorded.

Administration, Cutaneous↗
PubMed2003

Putting the Q into quality of life; the identification of subjective constructions of health-related quality of life using Q methodology.

Health related quality of life (HRQOL) is presented as a largely subjective construct of increasing importance in health discourse and practice. Key difficulties with the assessment and measurement of quality of life (QOL) are discussed. A Q methodological investigation of subjective constructions of health-related QOL is then reported using importance items derived from studies of the WHOQOL. Eight factors emerged from a factor analysis of the Q sorts of 90 healthy participants, each corresponding to a distinct construction of the meaning and relevance of QOL. The factors are interpreted and discussed under the following headings: 'Happy families, 'Stand on my own two feet', 'Emotional independence', 'Just do it!', 'Life as a positive challenge', 'In God we trust', 'Staying healthy enough to bring home the bacon' and 'You can't choose your family'. This diversity of views has implications for QOL testing.

Adult↗