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Showing papers on "Quality of life published in 1994"


Journal ArticleDOI
TL;DR: The Inflammatory Bowel Disease Questionnaire is a valid reliable assessment tool that reflects important changes in the health status of patients with IBD and should be used in future clinical trials in IBD.

677 citations


Journal ArticleDOI
TL;DR: In this article, a validation study of a new symptom assessment instrument, inpatients and outpatients with prostate, colon, breast or ovarian cancer were evaluated using the Memorial Symptom Assessment Scale and other measures of psychological condition, performance status, symptom distress and overall quality of life.
Abstract: Despite the importance of symptom control in the cancer population, few studies have systematically assessed the prevalence and characteristics of symptoms or the interactions between various symptom characteristics and other factors related to quality of life (QOL). As part of a validation study of a new symptom assessment instrument, inpatients and out-patients with prostate, colon, breast or ovarian cancer were evaluated using the Memorial Symptom Assessment Scale and other measures of psychological condition, performance status, symptom distress and overall quality of life. The mean age of the 243 avaluable patients was 55.5 years (range 23–86 years); over 60% were women and almost two-thirds had metastatic disease. The Karnofsky Performance Status (KPS) score was≤80 in 49.8% and 123 were inpatients at the time of assessment. Across tumour types, 40–80% experienced lack of energy, pain, feeling drowsy, dry mouth, insomnia, or symptoms indicative of psychological distress. Although symptom characteristics were variable, the proportion of patients who described a symptom as relatively intense or frequent always exceeded the proportion who reported it as highly distressing. The mean (±SD, range) number of symptoms per patient was 11.5±6.0 (0–25); inpatients had more symptoms than outpatients (13.5±5.4 vs. 9.7±6.0, p 80 (14.8±5.5 vs. 9.2±4.9, p<0.0001). The number of symptoms was highly associated with heightened psychological distress and poorer quality of life (for example, r=0.67 for the relationship with the Functional Living Index-Cancer, a QOL measure). These data clarify the prevalence and characteristics of cancer-related symptoms and suggest that the number of symptoms per patient may be a useful quality of life indicator.

628 citations


Journal ArticleDOI
25 May 1994-JAMA
TL;DR: In this article, the authors evaluated the impact on survival and health-related quality of life of two follow-up protocols in patients with early stage I, II, and III unilateral primary breast cancer.
Abstract: Objective. —To assess prospectively the impact on survival and health-related quality of life of two follow-up protocols in patients with early breast cancer. Design. —Randomized controlled clinical trial. Setting. —Multicenter study involving 26 general hospitals in Italy. Patients. —A consecutive sample of 1320 women younger than 70 years with stage I, II, and III unilateral primary breast cancer. Intervention. —Patients were randomly assigned to an intensive surveillance, which included physician visits and performance of bone scan, liver echography, chest roentgenography, and laboratory tests at predefined intervals (n=655), or to a control regimen (n=665), in which patients were seen by their physicians at the same frequency but only clinically indicated tests were performed. Both groups received a yearly mammogram aimed at detecting contralateral breast cancer. Main Outcome Measures. —Primary end points were overall survival and health-related quality of life. Results. —Compliance to the two follow-up protocols was more than 80%. At a median follow-up of 71 months, no difference was apparent in overall survival with 132 deaths (20%) in the intensive group and 122 deaths (18%) in the control group. No significant differences were apparent in time to detection of recurrence between the two groups. Measurements of health-related quality of life (ie, overall health and quality-of-life perception, emotional well-being, body image, social functioning, symptoms, and satisfaction with care) at 6,12, 24, and 60 months of follow-up did not show differences by type of care received. Conclusions. —Results of this trial support the view that a protocol of frequent laboratory tests and roentgenography after primary treatment for breast cancer does not improve survival or influence health-related quality of life. Routine use of these tests should be discouraged. (JAMA. 1994;271:1587-1592)

603 citations


BookDOI
01 Jan 1994
TL;DR: The development of Cross-Cultural Quality of Life Assessment Instruments and Ensuring International Equivalence of quality of Life Measures: Problems and Approaches to Solutions.
Abstract: The Development of Cross-Cultural Quality of Life Assessment Instruments.- Translation of Health Status Instruments.- Cross-Cultural Validation of Quality of Life Measures.- Ensuring International Equivalence of Quality of Life Measures: Problems and Approaches to Solutions.- The Development of the WHO Quality of Life Assessment Instrument (The WHOQOL).- Perspectives on Quality of Life.- The Relationship Between Health Economics and Health-Related Quality of Life.- The PCASEE Model: An Approach to Subjective Well-Being.- Quality of Life Assessment in Cancer.- Quality of Life Assessment in SWOG Cancer Clinical Trials: Translating and Validating a Spanish Questionnaire.- Quality of Life Assessment in Cancer Patients in India: Cross-Cultural Issues.- Measuring the Quality of Life in Breast Cancer.- Quality of Life Assessment in Specific Populations.- The Experiences and Quality of Life of Informal Caregivers.- Quality of Life Assessment in Arthritis.- The Assessment of Quality of Life in Refugees.- Quality of Life in Hypertensives and Normotensives in Israel: Introducing a Self-Structured Subjective Measure.- Subjective Quality of Life Assessment in Therapeutic Trials: Presentation of a New Instrument in France (SQLP: Subjective Quality for Life Profile) and First Results.

533 citations


Journal ArticleDOI
TL;DR: Improvements in exercise tolerance and quality of life can be achieved and sustained for 6 months in patients undergoing respiratory rehabilitation compared with those receiving conventional care.

517 citations


Journal ArticleDOI
TL;DR: This study provides evidence for the reliability and validity of two measures of quality of life and suggests that the DQOL seems more sensitive to lifestyle issues and contains special questions and worry scales oriented toward younger patients, whereas the SF-36 provides more information about functional health status.
Abstract: OBJECTIVE To examine the effects of type I and type II diabetes on patient perceptions of their quality of life and compare the psychometric properties of a generic versus a diabetes-specific quality of life measure. RESEARCH DESIGN AND METHODS Consecutive outpatients ( n = 240) from a large multispecialty diabetes clinic were studied on a single occasion using two measures of quality of life—Diabetes Quality of Life Measure (DQOL) and the Medical Outcome Study Health Survey 36-Item Short Form (SF-36). No interventions were performed. This study examines three issues: 1 ) the reliability(internal consistency) of the two measures; 2 ) the relationship between the DQOL and SF-36 scales; and 3 ) the influence of clinical patient characteristics, such as number and severity of diabetes complications, on quality of life. Examination of this issue provides information about the construct validity of the two quality of life measures. RESULTS The estimates of internal consistency (Cronbach9s alpha) for the DQOL and SF-36 subscales ranged from 0.47 to 0.97. These values werevery similar to the published findings from previous studies. The subscales of the two measures were variably correlated with one another (range of correlations: —0.003 to 0.60), indicating that the areas of functioning addressed by the DQOL and SF-36 overlapped only to a modest degree. Examination of the relationship of demographic factors to the DQOL measures suggests that they are not generally confounded by factors such as education, sex, or duration of diabetes. Health-related quality of life is affected by the marital status of both type I and type II diabetic patients, with separated and divorced individuals generally experiencing lower levels of quality of life. The quality of life measures were sensitive to clinical characteristics, such as frequency and severity of complications. Even after factors such as marital status and, among type II diabetic patients, type of treatment, patients9 severity of diabetes complications was a significant predictor of both the diabetes-related and the more broad-based measure of quality of life. For type II diabetic patients, insulin treatment was associated with lower levels of satisfaction with diabetes and greater impact of diabetes on quality of life. CONCLUSIONS This study provides evidence for the reliability and validity of two measures of quality of life. The two measures examine quality of life from different but complimentary perspectives. The DQOL seems more sensitive to lifestyle issues and contains special questions and worry scales oriented toward younger patients, whereas the SF-36 provides more information about functional health status. Thus, the measures may be used usefully in combination in studies of both type I and type II diabetic patients.

505 citations


Journal ArticleDOI
TL;DR: The SF-36 Health Status Questionnaire allows discrimination between patients with perennial allergic rhinitis and healthy subjects and most QOL scores were highly reliable.
Abstract: Background and aim: Perennial allergic rhinitis may impair social life. General scales of quality of life (QOL) are used to detect the importance of social life impairment, but the reliability and validity of QOL measures should be tested in patients with perennial allergic rhinitis. The extent to which QOL scores differ in patients with rhinitis and healthy subjects is unknown. Methods: A cross-sectional study was carried out in 111 patients with moderate to severe perennial allergic rhinitis and 116 healthy subjects to assess the validity of a general QOL scale, the SF-36 Health Status Questionnaire. This scale is based on 36 items selected to represent nine health concepts (dimensions). The internal reliability of each dimension of the questionnaire was examined. The differences in QOL scores between patients with rhinitis and healthy subjects were studied. Results: Most QOL scores were highly reliable. There was a significant impairment in eight of nine QOL dimensions in patients with perennial allergic rhinitis in comparison with healthy subjects. Conclusions: The SF-36 Health Status Questionnaire allows discrimination between patients with perennial allergic rhinitis and healthy subjects.

422 citations


Journal ArticleDOI
Bousquet, Bullinger, Fayol, Marquis, Valentin, Burtin 
TL;DR: The SF-36 Health Status Questionnaire allows discrimination between patients with perennial allergic rhinitis and healthy subjects as discussed by the authors, and the internal reliability of each dimension of the questionnaire was examined.
Abstract: Background and aim: Perennial allergic rhinitis may impair social life General scales of quality of life (QOL) are used to detect the importance of social life impairment, but the reliability and validity of QOL measures should be tested in patients with perennial allergic rhinitis The extent to which QOL scores differ in patients with rhinitis and healthy subjects is unknown Methods: A cross-sectional study was carried out in 111 patients with moderate to severe perennial allergic rhinitis and 116 healthy subjects to assess the validity of a general QOL scale, the SF-36 Health Status Questionnaire This scale is based on 36 items selected to represent nine health concepts (dimensions) The internal reliability of each dimension of the questionnaire was examined The differences in QOL scores between patients with rhinitis and healthy subjects were studied Results: Most QOL scores were highly reliable There was a significant impairment in eight of nine QOL dimensions in patients with perennial allergic rhinitis in comparison with healthy subjects Conclusions: The SF-36 Health Status Questionnaire allows discrimination between patients with perennial allergic rhinitis and healthy subjects (J ALLERGYCLINIMMUNOL1994;94:182-8)

390 citations


Journal Article
TL;DR: In this article, a study was carried out in 252 patients with asthma of variable severity (FEV) to assess the validity of a general QOL scale, the first French version of the SF-36 health status questionnaire (SF-36)
Abstract: Asthma is a chronic disease in which social life is altered. The importance of restrictions on social life may be greater in severe asthma or when symptoms are not adequately controlled. General scales of quality-of-life (QOL) may be used to detect the importance of social life impairment, but it is not yet known whether the scores of such QOL measures are reliable and valid in asthmatic patients. A study was carried out in 252 patients with asthma of variable severity (FEV, ranging from 25 to 131% of predicted) to assess the validity of a general QOL scale, the first French version of the SF-36 health status questionnaire (SF-36)

368 citations


Journal ArticleDOI
TL;DR: The SF-36 questionnaire is valid and reliable in asthma and can therefore be used to examine QOL in asthmatic and nonasthmatic patients and to determine to what extent asthma impairs social life.
Abstract: Asthma is a chronic disease in which social life is altered. The importance of restrictions on social life may be greater in severe asthma or when symptoms are not adequately controlled. General scales of quality-of-life (QOL) may be used to detect the importance of social life impairment, but it is not yet known whether the scores of such QOL measures are reliable and valid in asthmatic patients. A study was carried out in 252 patients with asthma of variable severity (FEV1 ranging from 25 to 131% of predicted) to assess the validity of a general QOL scale, the first French version of the SF-36 health status questionnaire (SF-36). This is based on 36 items selected to represent nine health concepts (physical, social, and role functioning; mental health; health perceptions; energy or fatigue; pain; and general health). All nine SF-36 category scores were highly significantly correlated with the severity of asthma assessed by the clinical score of Aas (p < 0.0007 to p < 0.0001). Eight SF-36 category scores were highly significantly correlated with FEV1 (p < 0.003 to p < 0.0001). A high internal reliability of SF-36 was found using the alpha coefficient of Cronbach (0.91 for the whole questionnaire). The SF-36 questionnaire is valid and reliable in asthma and can therefore be used to examine QOL in asthmatic and nonasthmatic patients and to determine to what extent asthma impairs social life.

362 citations


Journal ArticleDOI
TL;DR: It is concluded that patients who survive cancer do not return to a state of normal health and greater efforts need to be made early in diagnosis and treatment to understand rehabilitation problems and target interventions in the hope of reducing later sequelae.
Abstract: In a cross-sectional study design, a disease free sample of 57 lung, 117 colon, and 104 prostate cancer survivors who represented short, intermediate and long-term survivors completed a detailed assessment of quality of life (QOL) and rehabilitation needs using the CAncer Rehabilitation Evaluation System (CARES). Demographic and medical data, social support, and a global QOL rating were also assessed. Lung cancer patients showed no differences in QOL with respect to their period of survival. QOL improved for survivors of colon cancer as they lived for longer periods, but declined with time for survivors of prostate cancer. The best predictor of QOL for all groups was KPS, although other variables such as type of hospital, gender, and work status were predictive for survivors of colon cancer. For survivors of prostate cancer comorbidity with other medical illnesses, time since diagnosis and comorbidity due to psychiatric difficulties were predictive of QOL. All groups had significant rehabilitation problems in the domains of physical, psychosocial, sexual, medical interaction, and marital relationships. Lung cancer survivors had more problems than the other cancer survivors. We conclude that patients who survive cancer do not return to a state of normal health. They demonstrate a variety of difficulties with which they must cope as they continue to survive. Greater efforts need to be made early in diagnosis and treatment to understand rehabilitation problems and target interventions in the hope of reducing later sequelae.

Journal ArticleDOI
01 Jun 1994-Cancer
TL;DR: A data base was established to examine the nature and extent of problems in patients' and spouses' adaptation and their interrelationships and the effect of disease stage combined with treatment regimen on patients' quality of life.
Abstract: Background. Because of the dearth of information concerning the quality of life of patients with prostate cancer, a data base was established to examine the nature and extent of problems in patients’ and spouses’ adaptation and their interrelationships and to examine the effect of disease stage combined with treatment regimen on patients’ quality of life. Methods. One hundred seventy-two patients and 83 spouses/partners completed quality of life questionnaires in a prostate cancer health education lecture series. The measures used were the European Organization for Research and Treatment of Cancer (EORTC) Prostate Cancer Quality of Life Questionnaire, the Intrusion subscale (IS) of the Impact of Event Scale; and Selby’s QL Uniscale. Fifty-five percent of patients had received medical and/or surgical hormonal therapy, 28% had received a radical prostatectomy and/or radiation therapy only, and 18% had not been placed on any treatment. Results. Patients experiencing problems in adaptation were significantly more likely to have advanced stage disease: received surgical or medical hormonal therapy: and were reporting greater pain, fatigue, urinary problems, and deteriorating physical functioning. Spouses reported significantly greater psychological distress than did patients (EORTC Psychological Distress subscale, P < 0.001; IS, P < 0.001). Conclusions. A two-stage clinical evaluation is recommended, in which quality of life questionnaires would initially be used to identify patients and spouses experi

Journal ArticleDOI
TL;DR: Rehabilitation of COPD patients at home may improve quality of life; this improvement is not correlated with an improvement in lung function and exercise tolerance.
Abstract: We have developed a rehabilitation programme at home and have investigated its effects on quality of life (QOL), lung function, and exercise tolerance in patients with chronic obstructive pulmonary disease (COPD). We studied 43 patients with severe airflow obstruction: forced expiratory volume in one second (FEV1) 1.3 +/- 0.4 l (mean +/- SD), FEV1/inspiratory vital capacity (IVC) 37 +/- 7.9%. After stratification, 28 patients were randomly allocated in a home rehabilitation programme for 12 weeks. Fifteen patients in a control group received no rehabilitation. The rehabilitation group received physiotherapy by the local physiotherapist, and supervision by a nurse and a general practitioner. Quality of life was assessed by the four dimensions of the Chronic Respiratory Questionnaire (CRQ). We found a highly significant improvement in the rehabilitation group compared to the control group for the dimensions dyspnoea, emotion, and mastery. Lung function showed no changes in the rehabilitation group. The exercise tolerance improved significantly in the rehabilitation group compared to the control group. The improvement in quality of life was not correlated with the improvement in exercise tolerance. Rehabilitation of COPD patients at home may improve quality of life; this improvement is not correlated with an improvement in lung function and exercise tolerance.

Journal ArticleDOI
TL;DR: Strategies for future trials in head and neck cancer should continue to attempt to stress conservative surgical approaches and coordinated adjuvant therapy to maximize local regional control and quality of life.
Abstract: Purpose : To compare health-related quality of life factors in 845 head and neck cancer patients randomized to receive either conventional radiotherapy (2 Gy, 5 days-a-week) or a hypofractionated regimen (2.35 Gy, 4 days-aweek), a follow-up study was carried out 7 to 11 years after treatment in the surviving patients, representing 30% of the original patient number. Methods and Materials : The cancer-specific EORTC Core Quality of Life Questionnaire (30 item version; the EORTC QLQ-C30) and a 19 item head and neck cancer-specific questionnaire were mailed to the 245 surviving patients of the trial. The EORTC QLQ-C30 is comprised of six multi-item function scales, three symptom scales, and six single items which assess both symptoms and economic consequences of the disease. Two hundred and four patients (83%) completed the questionnaire. The two groups of patients (N = 103 and N = 101) treated by different fractionating schedules, were comparable with regard to sociodemographic variables, tumor site, treatment variables (including different types of surgical treatment), and secondary primary cancers. Patients in the conventional group had more advanced disease and a higher recurrence rate compared to patients in the hypofractionated group. Results : Unexpectedly, patients in the hypofractionated group, reported similar or better quality of life compared to patients in the conventional fractionated group. Patients in both groups described a high level of symptoms, like dryness in the mouth and mucus production. Clinical and sociodemographic variables did not explain variance in social function, emotional function or fatigue, except for the type of surgery performed, which significantly influenced the patients' emotional function. Conclusion : Long-term survivors of head and neck cancer reported a high level of disease and treatment related symptoms. Emotional function was significantly influenced by the type of surgical procedure. Strategies for future trials in head and neck cancer should continue to attempt to stress conservative surgical approaches and coordinated adjuvant therapy to maximize local regional control and quality of life. Functional and emotional outcome are important parameters which should prospectively be evaluated in future clinical trials in head and neck cancer.

Journal ArticleDOI
TL;DR: It may be possible to assess the preferences, aversions, and response to interventions of dementia patients even when the patients cannot report their evaluations, according to a preliminary report of ongoing research to evaluate a special care unit for patients with AD.
Abstract: Quality of life (QOL) in dementing illness comprises the same areas as in people in general. Domains of QOL in patients with Alzheimer disease (AD) include competent cognitive functioning, the ability to perform activities of daily living and to engage in meaningful time use and social behavior, and a favorable balance between positive emotion and absence of negative emotion. Dementing illness can strip the person of normal indicators of personhood. Formal assessment of such QOL indicators can counteract the tendency to view QOL as irrelevant to dementing illness. A preliminary report of ongoing research to evaluate a special care unit for patients with AD includes findings on measuring positive behaviors and both positive and negative emotion. Emotions judged from direct observation showed promising reliability and validity. Thus, it may be possible to assess the preferences, aversions, and response to interventions of dementia patients even when the patients cannot report their evaluations.

Journal ArticleDOI
01 Feb 1994-Thorax
TL;DR: Quality of life measures in patients with COPD are reviewed with the emphasis on issues important to the clinician who seeks an understanding of quality ofLife measures as they are used in therapeutic trials.
Abstract: Chronic obstructive pulmonary disease (COPD) is a leading cause of morbidity and mortality in industrialised nations. It is essentially incurable and, for many, inexorably progressive; health care providers spend much effort trying to minimise patients' symptoms and to improve their ability to function in dayto-day life. While improved survival time is an important aim of treatment, there is growing recognition that improving the quantity of an individual's life may not be the only goal; for some, improving the quality of life may be far more important. Since reducing symptoms, increasing function, and improving the quality of life are central therapeutic goals for patients with COPD, as for many chronic diseases, it is important for researchers and clinicians to develop a common understanding of what is meant by these phrases and how these concepts can be measured. In the past 10 years there has been an increasing body of literature on measurement of quality of life in patients with COPD and, more recently, on the efficacy of therapeutic agents based on quality of life measures. Studies measuring the quality of life in these patients appeared in the mid 1980s'4 when quality of life measures were used to assess continuous oxygen therapy,' intermittent positive pressure breathing,6 and, more recently, in the assessment of theophylline,7 inhaled bronchodilators,8 home respiratory nursing care,9 and pulmonary rehabilitation programmes.'0 As this trend continues it is important for clinicians to understand and assess these measures to help decide whether a new treatment is valuable. We will review quality of life measures in patients with COPD with the emphasis on issues important to the clinician who seeks an understanding of quality of life measures as they are used in therapeutic trials.

Journal ArticleDOI
TL;DR: The relationship between glycemic control and health-related quality of life was examined in patients with non-insulin-dependent diabetes mellitus (NIDDM) in a randomized controlled trial as discussed by the authors.
Abstract: The relationship between glycemic control and health-related quality of life was examined in patients with non-insulin-dependent diabetes mellitus (NIDDM). Within the context of a randomized controlled trial, 275 patients with NIDDM receiving primary care from a Veteran's Administration general medical clinic were enrolled and monitored for 1 year. Glycemic control (glycosylated hemoglobin levels) and health-related quality of life (Medical Outcomes Study Short-Form 36-item Health Survey [SF-36]) were assessed at baseline and at 1 year. Multivariate regression modeling using baseline and change scores during a 1-year period did not find a linear or curvilinear relationship between glycosylated hemoglobin and SF-36 scores (P = .15); this was true even after controlling for five covariates identified a priori (insulin use, number of diabetic complications, duration of diabetes, education, number of hyper-, or hypoglycemic episodes during the preceding month). Health services researchers and clinicians alike need to be aware that these two important outcomes may not be directly related. This lack of association could contribute to the high noncompliance rates observed among patients prescribed complex diabetic regimens. Unless patients perceive a benefit from following such regimens, good glycemic control may continue to be an elusive therapeutic goal, especially in patients with long-standing disease.

Journal ArticleDOI
TL;DR: Much of the negative effect of mental illness attributions is explained by perceived stigma, lower self-esteem, and a higher level of depressive symptomatology.

Journal ArticleDOI
15 May 1994-Cancer
TL;DR: Improvements in quality of life after treatment with recombinant human erythropoietin (rHuEPO) often have been reported in patients with endstage renal disease and chronic anemia of cancer, and comparatively few systemic investigations have been performed.
Abstract: Background. Improvements in quality of life after treatment with recombinant human erythropoietin (rHuEPO) often have been reported in patients with endstage renal disease. In patients with chronic anemia of cancer, comparatively few systemic investigations have been performed. Methods. Various aspects of quality of life were selfreported on linear analogue scales of a slightly modified questionnaire that was first developed to assess toxicity of chemotherapy in patients with breast cancer. Thirty-four patients with chronic anemia of cancer completed 10 items (feelings of well-being, mood, level of activity, pain, nausea, appetite, physical ability, social activities, anxiety, and helpfulness of therapy) before and after 8 and 12 weeks of rHuEPO therapy. Results. Patients with response to the therapy significantly improved after 8 weeks of treatment in some items and after 12 weeks in all items. Patients with no response also had some improvement after 12 weeks of therapy. Hemoglobin levels correlated strongly with mood and appetite. World Health Organization (WHO) performance status improved significantly in patients with response but tended to diminish in those without. Median survival was 4.1 months in patients with no response and 12.0 months in those with response. After 12 weeks of therapy, the scores of the items “physical ability” and “social activities” proved to be significant prognostic factors, which surpassed the prognostic power of the WHO performance status. Conclusions. The results of rHuEPO therapy in chronic anemia of cancer are far more than cosmetics of laboratory values. They enable the patients with response to lead a physically and socially more active life with less anxiety, brighter moods, and an increased general feeling of well-being.

Journal ArticleDOI
TL;DR: The Life Situation Survey, a subjective indicator of life quality developed to address issues in chronic disability, served as the primary assessment tool as mentioned in this paper for identifying issues associated with quality of life after spinal cord injury.

Journal ArticleDOI
TL;DR: Relations between the QLMI and other measures provide moderate to strong evidence of its validity in discriminating between patients following AMI according to their health- related quality of life, and in measuring changes in health-related quality oflife over time.

Journal ArticleDOI
TL;DR: Development of a 21-item, parent report measure for assessing the quality of life of children with cancer demonstrated good concurrent and discriminant relationships with scores on measures of adjustment hypothesized to covary with the dimensions of QOL assessed.
Abstract: This study describes the development of a 21-item, parent report measure for assessing the quality of life (QOL) of children with cancer. The Pediatric Oncology Quality of Life Scale (POQOLS) provides a total score and three factor scores that assess physical function and role restriction, emotional distress, and reaction to current medical treatment. Internal consistency reliabilities of the total scale and the three factors were high, as was interparent agreement. In addition, POQOLS scores demonstrated good concurrent and discriminant relationships with scores on measures of adjustment hypothesized to covary with the dimensions of QOL assessed

Journal ArticleDOI
TL;DR: Health‐related quality of life (HRQOL) among patients who have undergone “curative” epilepsy surgery is better than that of patients with hypertension, diabetes, heart disease, or depressive symptoms.
Abstract: Health-related quality of life (HRQOL) of 166 adults who had previously undergone surgical treatment for intractable epilepsy was compared with that of outpatients with hypertension, diabetes, heart disease, and/or depressive symptoms. Eight self-reported HRQOL domains were evaluated and compared by the RAND 36-Item Health Survey 1.0: emotional well-being, social function, role limitations due to emotional problems, energy/fatigue, pain, role limitations due to physical problems, physical function, and general health perceptions. A pictorial item on overall QOL was also administered, for a total of 9 HRQOL domains. With adjustment made for age, gender, education, and comorbid conditions, 55 completely seizure-free patients scored higher (i.e., better health) than patients with hypertension in 6 of 9 domains, higher than diabetic patients in 8 of 9, higher than those with heart disease in all 9, and higher than those with depressive symptoms in all 9 (all p < 0.05). Sixty-seven patients still having seizures with impaired consciousness scored worse than hypertensive patients in 5 domains, worse than diabetic patients in 3, and worse than heart disease patients in 2; for all 3 conditions, these domains included emotional well-being and overall QOL (p < 0.05). These 67 patients, however, scored better than patients with depressive symptoms in all 9 domains, better than those with heart disease in 2, and better than those with diabetes in 1 (all p < 0.05). Forty-four other patients had only simple partial seizures (SPS); their scores were comparable to those of diabetic and heart disease patients on mental and social health scales but were higher ("better") than those of these patients on physical health scales. HRQOL among patients who have undergone "curative" epilepsy surgery is better than that of patients who have hypertension, diabetes, heart disease, or depressive symptoms. Patients who have continued seizures with altered consciousness are worse off in terms of emotional well-being and overall QOL than all other patients, except for those with depressive symptoms.

Journal ArticleDOI
TL;DR: The results demonstrate that from the perspective of the general population, the overall long-term burden experienced by ELBW children is greater than that for reference children.

Journal ArticleDOI
01 Feb 1994-Cancer
TL;DR: The palliative effects of chemotherapy in patients with symptomatic advanced colorectal cancer was studied in a randomized multicenter trial comparing a regimen of methotrexate/5‐fluorouracil followed by leucovorin rescue (MFL) with a program of 5‐FU/leucovOrin (FLv).
Abstract: Background. To increase the knowledge about the palliative effects of chemotherapy in patients with symptomatic advanced colorectal cancer, physician- and patient-rated “quality of life” was studied in a randomized multicenter trial comparing a regimen of methotrexate/5-fluorouracil (5-FU) followed by leucovorin rescue (MFL) with a regimen of 5-FU/leucovorin (FLv). Methods. Between January 1989 and December 1990, 70 patients completed a quality of life questionnaire at randomization and after every fourth treatment course. At one of the hospitals, the evaluation was done as an interview (interview group, n = 24), whereas a questionnaire was used at the other hospitals (questionnaire group, n = 46). Results. Objective responses (complete response plus partial response) were obtained in 15 (21%) patients, subjective responses in 29 (41%) patients, and an overall improved quality of life in 25 (36%) patients. In addition, 16 (23%) patients had unchanged quality of life during at least 4 months. There was a correlation between objective responses, subjective responses, and improvements in quality of life, although discrepancies were noticed, particularly in patients with only slight symptoms. Response rates were higher in the interview group than in the questionnaire group (P < 0.01). This difference could be related to a more favorable outcome when 5-FU was given as a bolus injection, rather than as a short-term infusion (more than 5 minutes). Conclusions. Improvements or prolonged stabilization of disease in quality of life can be achieved in at least half of the patients with tumor-related symptoms. However, factors related to the administration of chemotherapy may influence this proportion.

Journal ArticleDOI
TL;DR: The results suggest that the palliative treatment of advanced cancer and the terminally ill should be guided by a broad concept of well-being that goes beyond one based only on physical functioning.
Abstract: A cross-validation of the Karnofsky Performance Status (KPS) and quality of life (QOL) as measured by item 30 of the quality of life questionnaire developed by the European Organization for Research and Treatment of Cancer Study Group (EORTC QLQ-C30) was conducted using ordered logit analysis and prospective data from a continuous sample of 139 lung cancer patients. The QOL is found to be a much broader concept than the KPS, since it likely captures not only physical functioning but also functioning in the non-physical dimensions of social, emotional, and possibly cognitive well-being as well as the level of distress in the physical dimensions of pain, breathing and fatigue. These results suggest that the palliative treatment of advanced cancer and the terminally ill should be guided by a broad concept of well-being that goes beyond one based only on physical functioning.

Journal ArticleDOI
01 Nov 1994-BJUI
TL;DR: There was a strong correlation between the well-being scale and the EORTC scales for overall quality of life and psychological distress, and psychosocial treatment might be helpful for patients with mental symptoms.
Abstract: Objectives To study the long-term psychosocial wellbeing of patients following successful physical treatment for cancer of the penis. Patients and methods Thirty patients (median age at follow-up 57 years, range 28–75) were followed up for a median of 80 months after treatment for penile cancer (local excision/laser beam treatment, 5; radiotherapy, 12; partial penectomy, 9; total penectomy, 4). They underwent a semi-structured interview and completed the Impact of Events Scale, General Health Questionnaire and the EORTC QLQ C-30 questionnaire. Global scales for measuring sexual function, subjective well-being and social activity were constructed and found reliable and valid. Results There was a strong correlation between the well-being scale and the EORTC scales for overall quality of life and psychological distress. Patients treated with partial or total penectomy had a worse outcome with regard to sexual function than patients treated conservatively, but there was no difference in the other domains of quality of life, indicating that even the more radically treated patients usually adapted adequately. Half of the individuals had mental symptoms at follow-up, and these patients were less satisfied and showed less social activity. Seven men reported that, if asked again, they would choose treatment with lower long-term survival to increase the chance of remaining sexually potent, but the majority gave priority to higher long-term survival. Conclusion Before treatment of penile cancer, physicians should thoroughly discuss the expected outcome and consequences of the different treatment options with the patient. Psychosocial treatment might be helpful for patients with mental symptoms.

Journal ArticleDOI
TL;DR: There were clear changes in quality of life following 12 weeks in a community leg ulcer clinic, which were related to the healing of the ulcer, and systems of care that offer rapid healing and improve patients' well-being must be considered.
Abstract: Objective:To investigate changes in the quality of life of patients with leg ulcers being treated in community leg ulcer clinics.Design:Patients were interviewed using a standard questionnaire, and...

Journal ArticleDOI
TL;DR: The self-reported health status and quality of life of recurrence-free survivors of Hodgkin's disease is still affected 10 to 18 years after treatment, and physical and role functioning, sexuality, and overall health perceptions appear to be compromised.

Journal Article
TL;DR: Caregivers of terminally ill people with cancer can maintain their quality of life during the first month of hospice care, and evidence exists that the CQLI is valid and reliable.
Abstract: Purpose/objectives To evaluate the effects of hospice services on the quality of life of primary caregivers and to evaluate the validity and reliability of a new tool Design Exploratory, descriptive Setting A nonprofit hospice in Florida; clients are cared for primarily in the home Sample 68 adult primary caregivers of 68 patients with cancer enrolled in hospice care and 62 noncaregiving adults Methods Subjects were recruited on admission to hospice and completed the Caregiver Quality of Life Index (CQLI) and the Hospice Quality of Life Index (HQLI) on admission and during week four of hospice care Main research variables Caregivers' assessment of their own physical, social, financial, and emotional quality of life; patients' assessment of their physical, psychological, spiritual, social, and financial well-being Findings No significant differences were found in caregiver quality-of-life scores from admission to week four, and no correlations existed between quality-of-life scores and age or education A significant positive correlation was found between the caregivers' quality of life and their estimate of the patients' quality of life Evidence exists that the CQLI is valid and reliable Conclusions Caregivers of terminally ill people with cancer can maintain their quality of life during the first month of hospice care The caregiver's perception of the patient's quality of life may affect the caregiver's quality of life Implications for nursing practice When offering support to primary caregivers, the hospice team should include the four domains (physical, emotional, social, and financial) and should focus on the interrelatedness of the patient's and caregiver's quality of life