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Life quality vs the 'quality of life': assumptions underlying prospective quality of life instruments in health care planning.
Quality of Life is a broad construct used in health planning, health economics, and medical decision-making. It is also a term that has a long currency in social and sociological literatures. This paper considers the assumptions underlying prospective QL instruments in an historical and contemporary context. It argues that as a tool in health planning and in clinical decision making life quality as a measurement has its origins in the early eugenics literature and the social policies that derived from it in first North America, the primary focus of this paper, and later in Europe. Reference to narrative and social literatures, as well as those involving coping and adaptation, are then used to critique the assumptions underlying this class of QL instruments. It concludes that to the degree now current prospective instruments reflect a purely physical perspective of "disease burden" irrespective of social conditions they create a context that works against life quality, and in some cases, the continuance of persons with physical differences.
A needs assessment of perceived life quality and life stressors among medical hospital employees.
This study was designed to assist an employee-counseling program in a medical hospital by assessing the life quality and life stressors of its employees. 246 employees completed a written questionnaire which included a life events inventory and the Perceived Quality of Life (PQOL) Inventory (Andrews & Withey, 1976). Items on both inventories covered the areas of job, family/support, and financial affairs. Items measuring self-efficacy from the PQOL scale served as the criterion for potential counseling service utilization. Results indicated that family-support concerns were the most predictive of perceptions of self-efficacy. In addition, negatively perceived life changes were more powerful predictors of life quality than were life changes per se. Finally, employees who were identified as less satisfied in the various quality of life areas were separated from their spouses, over 55 years of age, and had lower education levels, large families, and low incomes.
[Progress in surgery and quality of life, quality of life after organ transplantation].
Kidney and liver transplantations are well established surgical procedures. During the past years survival rates have improved 3% of kidney transplantations have 1-year mortality. Subjective quality of life and professional rehabilitation are associated with the graft function parameters of successful therapy. Seventy-six percent of liver-transplanted patients consider their quality of life improved after the operation. 52% are able to return to work. Future efforts must focus on improving immunosuppression for specific tolerance and sensitizing the public to the problems of obtaining organs for transplantation.
Development and validation of an instrument to measure the effects of a mistletoe preparation on quality of life of cancer patients: the Life Quality Lectin-53 (LQL-53) Questionnaire.
Mistletoe preparations standardised to the content of mistletoe lectin are supposed to improve quality of life (QoL) in patients with cancer. To obtain a validated and sensitive research instrument, the Life Quality Lectin-53 (LQL-53) Questionnaire was developed in three phases: item generation via interviews with 42 patients, item selection by means of a study with 109 cancer patients, and psychometric testing. The LQL-53 includes 46 items assigned to the subscales 'General well-being', 'Emotional well-being', 'Vitality' 'Hope', 'Locus of control', Social relationships', and 'Physical complaints', plus seven items dealing with possible adverse effects of mistletoe treatment. Psychometric testing was carried out in a study with 112 patients with solid tumours who were treated with a mistletoe preparation standardised to mistletoe lectins for 12 weeks. Internal consistency (Cronbach's alpha) was between 0.72 and 0.94. Test-retest reliability was > or = r of 0.72. Subscales correlated highly with external criteria. Construct validity, as determined by Multitrait Scaling Analysis, resulted in an optimal assignment of items to subscales (scaling success) for four of the subscales. During the course of the therapy, significant improvement in QoL was found in all subscales. In two of the subscales, effect size was high (>0.80), and in five other subscales it varied between 0.53 and 0.78.
Skin cancer and quality of life: assessment with the Dermatology Life Quality Index.
BACKGROUND: Quality of life (QOL) has been identified as an important outcome in cancer research, yet the most common malignancy among humans, nonmelanoma skin cancer (NMSC), has been poorly studied in this regard. OBJECTIVE: To determine whether change occurred in the QOL of NMSC patients after surgery using a general, validated dermatology QOL instrument: the Dermatology Life Quality Index (DLQI). METHODS: A prospective study was conducted on 121 consecutive patients referred to a dermatologic Mohs surgery clinic with NMSC of the head and neck. QOL assessment was performed using the DLQI before (n=121) and after surgical treatment at 4 months (n=101). RESULTS: QOL scores demonstrated little handicap at initial diagnosis. The total DLQI scores showed little change over time, but an item analysis revealed that 2 of the 10 items demonstrated statistically significant change over time, with QOL improving after treatment-decreased painfulness/itchiness/soreness and less necessity to use concealing clothing. CONCLUSIONS: General dermatology QOL instruments demonstrated minimal handicap at initial diagnosis and little change after treatment of NMSC. Although the associations were modest, improvement in some aspects of well-being after treatment of NMSC was demonstrated. A more disease-specific instrument may be necessary to study this disease process further.
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.
Development of the multidimensional index of life quality. A quality of life measure for cardiovascular disease.
OBJECTIVES: The purpose of this study was to design a multidimensional measure of health-related quality of life appropriate for patients with cardiovascular disease that was psychometrically sound, brief, and easy to administer. METHODS: Qualitative interviews conducted with healthy subjects and patients with cardiovascular diseases identified nine major quality of life domains. Based on the responses of 129 cardiovascular disease patients recruited from hospitals and clinics, a criterion-based approach was used to select 35 questionnaire items that best tapped these domains. Psychometric properties of the Multidimensional Index of Life Quality (MILQ) were tested with a sample of 348 patients with various cardiovascular diseases. RESULTS: Cronbach's alpha was 0.76 or higher for eight of the nine MILQ domains. Test-retest reliability coefficients were 0.73 or greater in all but two domains. Individual domain scores as well as a weighted overall quality of life index were correlated highly with self-assessed health and the number of heart-related symptoms. CONCLUSIONS: The Multidimensional Index of Life Quality is a psychometrically reliable and valid instrument for measuring quality of life in patients with cardiovascular diseases. The MILQ also may be a suitable measure for other types of chronic diseases.
Translating the science of quality of life into practice: What do dermatology life quality index scores mean?
This study's aim was to determine the relationship between Dermatology Life Quality Index (DLQI) scores and a Global Question (GQ) concerning patients' views of the overall impairment of their skin-related quality of life (QoL), and to express this relationship by identifying bands of DLQI scores equivalent to each GQ descriptor. A DLQI questionnaire and the GQ were mailed to 3834 adult general dermatology outpatients. There were 1993 (52%) responses: male 841; female 1152. Mean DLQI score = 4.86 (range 0-30, standard deviation (SD) = 5.83). Mean GQ score = 1.22 (range 0-4, SD = 1.20). The mean, mode, and median of the GQ scores for each DLQI score were used to devise several sets of bands of DLQI scores, and kappa coefficients of agreement calculated. The set proposed for adoption is: DLQI scores 0-1 = no effect on patient's life (GQ = 0, n = 754); DLQI scores 2-5 = small effect on patient's life (GQ = 1, n = 611); DLQI scores 6-10 = moderate effect on patient's life (GQ = 2, n = 327); DLQI scores 11-20 = very large effect on patient's life (GQ = 3, n = 242); DLQI scores 21-30 = extremely large effect on patient's life (GQ = 4, n = 59); kappa coefficient 0.489. Banding of the DLQI will aid the clinical interpretation of an individual's DLQI score and allow DLQI scores to inform clinical decisions.
Quality of life and acne in Scottish adolescent schoolchildren: use of the Children's Dermatology Life Quality Index (CDLQI) and the Cardiff Acne Disability Index (CADI).
BACKGROUND: Acne vulgaris is known to adversely affect all aspects of quality of life. However, although acne is thought to occur in the majority of adolescents, there are few data currently available on the impact of acne in this age group. OBJECTIVES: Measurement of the impairment of health-related quality of life (HRQoL) in teenage Scottish schoolchildren in a comparative study using two HRQoL questionnaires. A secondary objective was to collect data on the use and perceived efficacy of medical and over-the-counter (OTC) preparations. STUDY DESIGN: An anonymous cross-sectional survey of 200 adolescent (15-18 years) Dundee schoolchildren was conducted by means of two self-reported questionnaires: the Children's Dermatology Life Quality Index (CDLQI) and the Cardiff Acne Disability Index (CADI). Data on demographics and therapeutic modalities and their perceived efficacy were also collected. ANALYSIS: Statistical analysis was performed using the package Stata 7.0. RESULTS: Self-reported acne was present in 83% of teenagers (147/178), with similar sex distribution (54% male, 46% female). The overall mean CDLQI score (max. 30) was low 1.7 {6% impairment} (CI -1 to 0), range 0-19. Nine pupils scored between 5 and 9 {17-30% impairment} suggesting moderate HRQoL impairment and three scored > 10 {> 33% impairment} indicating severe impairment. The overall mean CADI score (max. 15) of 1.9 {13% impairment}, CI 0 to 1 (range 0-15) was also low, but 12 pupils scored between 5 and 9 {33-60% impairment}, one scoring 10 + {> 67% impairment} and one scoring the maximum, 15 {100% impairment}. There was no significant difference in mean scores between the sexes in either questionnaire (P = 0.5). There was good correlation between the results from the two questionnaires (Spearman's rho = 0.62). Three-quarters (75%) had used OTC products, of which only a third (33%) felt they helped 'a lot'. Fifteen per cent were receiving prescribed treatment from their doctors of which 66% found it helpful. CONCLUSIONS: Self-reported acne occurred in 83% (147/178) of the Scottish teenagers involved in this study, which confirms previous reports of a high prevalence of acne in teenagers. Cross-validation of the CLDQI and CADI demonstrated good correlation and both scales were easy to administer and identified 11% (16/147) of teenagers who perceive their lives to be significantly affected by their acne (8% moderately to severely, 3% severely). It is important to identify and treat such teenagers early to reduce the future socio-economic burden of their acne.
Validation of the Dermatology Life Quality Index as an outcome measure for urticaria-related quality of life.
BACKGROUND: Chronic idiopathic urticaria (CIU) is a debilitating skin disease that affects patients' quality of life (QOL). The Dermatology Life Quality Index (DLQI) assesses QOL parameters across several types of dermatologic conditions. However, an evaluation of the validity of the DLQI for use in CIU patients has not been undertaken, because CIU, unlike other chronic skin conditions, is subject to daily or weekly symptom fluctuations. OBJECTIVE: To test the reliability and validity of the DLQI in 2 samples of CIU patients treated with fexofenadine hydrochloride (20, 60, 120, or 240 mg twice daily). METHODS: Data were obtained from 2 similar multicenter, double-blind, randomized, placebo-controlled, parallel-group studies of CIU patients (n = 418 and n = 439). Patients completed the 10-item DLQI during 3 clinic visits (approximately 2 weeks apart). Clinic personnel also recorded patients' symptoms. RESULTS: The results of the DLQI items were similar to those obtained with other skin disease populations, indicating the presence of relatively symmetrical distributions. Reliability was high, demonstrating the lack of excessive random measurement error (alpha coefficient = .89 and .87 for samples 1 and 2). Factor analysis resulted in a unidimensional pattern, supporting the use of a total DLQI score. Most DLQI items distinguished patients with varying degrees of QOL impairment, highlighting the sensitivity of this instrument. Construct validity was moderate, providing evidence that the DLQI was responsive to changes in patients' clinical status. CONCLUSIONS: The DLQI is a valid, reliable, and clinically useful outcome measure for assessing QOL in CIU patients.
Quality of life, quality of care, and patient satisfaction: perceptions of patients undergoing outpatient autologous stem cell transplantation.
PURPOSE/OBJECTIVES: To further expand the limited body of knowledge of the perceptions of quality of life (QOL), quality of care, and patient satisfaction among patients who receive high-dose chemotherapy with an autologous stem cell transplant (ASCT) on an outpatient basis. DESIGN: Descriptive longitudinal. SETTING: Nine clinical sites associated with a national oncology practice management network in locations across the United States. SAMPLE: 36 patients scheduled to receive high-dose chemotherapy with ASCT selected by nonprobability consecutive sampling. METHODS: Subjects completed the Functional Assessment of Cancer Therapy Bone Marrow Transplant (FACT-BMT) before high-dose chemotherapy, four to six weeks postchemotherapy, and six months postchemotherapy. An independent nurse researcher conducted telephone interviews about the treatment experience, perceptions of quality of care, and satisfaction with care. FACT-BMT data were analyzed using descriptive statistics and multivariate analysis of variance, and qualitative data about perceptions of care were analyzed using Giorgis methodologic reduction. Bivariate associations were made between overall degree of satisfaction with care and QOL as measured by the FACT-BMT. MAIN RESEARCH VARIABLES: Clinical outcome, QOL, patient satisfaction, and patient perceptions of care quality. FINDINGS: Mean FACT-BMT scores were lower one month post-treatment than at baseline and highest six months post-treatment. Subjects with progressive disease reported lower QOL at one and six months post-treatment, noted more complaints, and ranked their satisfaction with care lower than subjects with no evidence of disease. Subjects offered ASCT program improvement recommendations in the areas of communication, information, nursing care, ancillary needs assistance, ancillary agencies, and survivor support. CONCLUSIONS: In this study, the QOL of patients undergoing outpatient high-dose chemotherapy with ASCT decreased post-treatment but increased to levels higher than those found at pretreatment by six months. A good clinical outcome following high-dose chemotherapy and ASCT was associated with higher QOL and greater satisfaction with care. IMPLICATIONS FOR NURSING: Knowledge of the outpatient ASCT experience and its effect on QOL can be used to further refine the content and timing of educational and supportive interventions for patients undergoing ASCT. Information about patients satisfaction with treatment and perceptions of quality of care provides insight about their expectations and perceived needs and can be used to redesign outpatient ASCT programs.
The relationship between quality of care, quality of life, quality of work life and research.
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A national study of the importance of oral health to life quality to inform scales of oral health related quality of life.
OBJECTIVES: To assess the content validity of traditional oral health status scales as measures of oral health related quality of life (OHQOL), based on a general public's perception of the most important ways in which oral health affects quality of life (QoL). METHODS: A nationwide United Kingdom study involving a random probability sample of 1778 adults. Data were collected by face-to-face interviews in participants homes. RESULTS: Most 75% (1332) perceived oral health as being important to QoL. Among them, 53% (699/1332) identified oral health's importance to QoL as being in a positive manner. Existing scales predominantly fail to include this dimension. The general public ranked oral health's importance to QoL through a range of physical, social and psychological domains. Most frequently though affecting eating or comfort; domains considered by all instruments. Other domains/ways are presented. It is apparent that even when some of the multidomain scales are employed, they frequently omit items that the public perceives as being most important to QoL. CONCLUSION: The study raises concerns about the appropriateness of utilising many of the existing oral health status scales as measures of OHQOL because the concepts do not appear to be interchangeable.
[Methodical approach to studying quality life of patients which underwent plastic operation].
The obtained results of the study are based on observation of life quality of 98 patients which have undergone traditional and combined operation. The article presents quality life indices of healthy subjects and those operated. Traditionally operated patients were established to have lower quality life indices in 6 years after the operation provided in comparison with healthy subjects. It is explained by not-long lasting cosmetic effect of the face-lifting. Combined cosmetic operation was characterized by considerably higher quality life indices reflecting physical activity as well as social and role-emotional life. These data assure that efficiency of combined operation is higher than a traditional one.
Ten years of "extended" life: quality of life among heart transplantation survivors.
BACKGROUND: Long-term quality of life (QOL) outcome in heart transplant recipients still remains uncertain. This study evaluates the health status and QOL of survivors with associated predictors 10 years after heart transplantation. PATIENTS AND METHODS: A total of 276 patients who underwent heart transplantation in the Department of Cardiac Surgery, University of Pavia, between 1985 and 1992 were included in a cross-sectional study. Patients still alive 10 years after transplantation (n=122) were asked to complete the SF36 questionnaire and then received a full clinical examination. All QOL instruments that were used had acceptable reliability and validity. Descriptive statistics, Kaplan-Meier estimate, correlation coefficients, and general linear regression were used to analyze the data. RESULTS: Survival rates 1, 5, and 10 years after transplantation were 87%, 77%, and 57%, respectively, and the average life expectancy was 9.16 years. The mental QOL of patients 10 years after heart transplantation was similar to that among the general population. The physical QOL was worse among patients when compared with the QOL of the general population, with predictors including older age, being married, the presence of complications, and impaired renal function. CONCLUSIONS: Heart transplantation ensures a relatively high QOL even 10 years after surgery. Predictors of a poor QOL were determined, which may help to identify those patients for whom a poor outcome is likely so treatment can be tailored accordingly.
[Life quality of patients with muscular failure, using permanent respiratory support, seen from their point of view. 1. Information, choice and quality of life].
Sixteen patients with neuromuscular disease receiving long-term assisted ventilation participated in a combined questionnaire/interview investigation with the purpose of illustrating: 1. What information the patient had received prior to institution of the respirator treatment, 2. The difficult choice which had to be made, 3. Whether life as a severely disabled person with assisted ventilation is worth living, and 4. The factors on which successful respirator treatment depends. It is concluded that the general information on use of assisted ventilation should be implemented at an early stage, preferably before problems of respiratory insufficiency occur, and that information should be carried out by people other than merely professionals and be as broad and truthful as possible in order to provide the disabled person with sufficient foundation and sufficient time to consider his personal choice of potential respirator treatment. Further, it is concluded that life for these sixteen ventilator-dependent persons definitely is worth living. The fact that the respirator implies the prospect of longer life, partly freed from symptoms of hypoventilation, means that they have got strength and time for education, work, family and dreams. No correlation was found between the success of the respirator treatment and the patients' sense of achieved quality of life and factors such as age, family-/working situation, extent of disability etc., and professionals should not attach importance to such factors in the selection of "suitable" patients for assisted ventilation.
[Contribution of health services to public health. Longer life, quality of life and functional capacity].
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