Measurement of health-related quality of life of patients receiving conservative treatment for limb lymphoedema using the Nottingham Health Profile

There is increasing interest in the health-related quality of life (HRQOL) of patients with chronic oedema. Studies in this area have tended to be exploratory and little work has examined the potential for HRQOL as a treatment outcome indicator in this context. This study aimed to ascertain whether or not conservative treatment for lymphoedema results in a measurable change in HRQOL, using the Nottingham Health Profile Part 1 (NHP-1) as the study instrument. Thirty-four patients participated. The patients received a range of conservative treatments. The participants completed the NHP-1 prior to treatment and 4 weeks after completion of the initial treatment phase. The overall post-treatment NHP-1 scores were significantly lower than the overall pre-treatment scores (z = 3.1 and p < 0.01), indicating an improvement in the HRQOL. The greatest change in a single dimension was in physical mobility (z = 2.3 and p < 0.05). The change in limb volume was not associated with a change in any NHP-1 subscale. A significant correlation was found between an improvement in skin condition and an improvement in scores on the 'pain' subscale (r = 0.53 and P < 0.01). It is concluded that the NHP-1 was useful in the assessment of the 'physical' domains of HRQOL in this context, but was less useful with regard to psychological and emotional domains.     

Rasch measurement for reducing the items of the Nottingham Health Profile

The present study aimed to develop a short form of the Spanish version of the Nottingham Health Profile (NHP) by means of Rasch analysis. Data from several Spanish studies that included the NHP since 1987 were collected in a common database. Forty-five different studies were included, covering a total of 9,419 subjects both from the general population and with different clinical pathologies. The overall questionnaire (38 items) was simultaneously analyzed using the dichotomous response model. Parameter estimates, model-data fit and separation statistics were computed. The items of the NHP were additionally regrouped into two different scales: Physical (19 items) and Psychological (19 items). Separated Physical and Psychological parameter estimates were produced using the simultaneous item calibrations as anchor values. Misfitting items were deleted, resulting in a 22 item final short form (NHP22)-11 Physical and 11 Psychological-. The evaluation of the item hierarchies confirmed the construct validity of the new questionnaire. To demonstrate the invariance of the NHP22 item calibrations, Rasch analyses were performed separately for each study included in the sample and for several sociodemographic and health status variables. Results confirmed the validity of using the NHP22 item calibrations to measure different groups of people categorized by gender, clinical and health status.     

Assessing health-related quality of life in chronic hepatitis C using the Sickness Impact Profile

In a randomized, controlled trial that demonstrated the efficacy of interferon alfa-2b 3 million units three times a week for 24 weeks in controlling chronic hepatitic C (non-A, non-B), the Sickness Impact Profile (SIP) was used to evaluate the impact of disease and treatment on health-related quality of life (HRQOL). The SIP was self-administered by 160 patients before treatment, at the end of treatment, and at the study endpoint. Before treatment, patients with chronic hepatitis C scored significantly (P < 0.05) higher (worse) than an historical control group of the general population in mean total SIP score and in all categories except eating. The highest degree of impairment was observed in the work, sleep and rest, and recreation and pastimes categories. After treatment, patients who received interferon alfa-2b had significant (P < or = 0.05) improvement in work, sleep and rest, and recreation and pastimes scores. Numerical improvement was observed in total score, physical and psychosocial dimension scores, and most individual category scores. Mean SIP scores were unchanged or slightly worsened in untreated control patients. In responders (patients with improvement in serum alanine aminotransferase levels), the largest improvement was seen in work scores. The SIP appears to be a reliable and valid instrument for describing the impact of chronic hepatitis C on HRQOL but lacks disease-specificity and the ability to reflect clinically relevant changes. Thus the SIP is not the best instrument to evaluate the HRQOL effects of treatment with interferon alfa-2b in patients with chronic hepatitis C.     

The MOS SF-36 health survey questionnaire in severe chronic airflow limitation: comparison with the Nottingham Health Profile

This study documents the cross-sectional, health-related quality of life (HRQOL) measures obtained at baseline for patients with severe chronic airways limitation (CAL) being assessed for home oxygen therapy (HOT) at the Flinders Medical Centre, Adelaide, South Australia. Two generic quality of life instruments, the Nottingham Health Profile (NHP) and the Medical Outcomes Study (MOS) short form 36-item questionnaire (SF-36), were administered by interview to the same patients to permit comparisons to be made between the two instruments. SF-36 mean scores were also compared with scores obtained in separate studies of a South Australian elderly general population and of groups of Australian subjects with various medical and psychiatric conditions. NHP mean scores were compared with scores from an elderly group of Adelaide residents from a household survey. HRQOL measures were obtained for 60 patients, 32 males and 28 females. At assessment for HOT, patients with severe CAL were experiencing severe impairment in their quality of life in comparison to age-matched South Australian norms, with physical disability the major limitation. There were several significant correlations between the domains of the SF-36 and the NHP which were predominantly gender-specific. Only small decrements in mental health were found with the SF-36 questionnaire. The SF-36 and the NHP appear to provide discrepant information for severely disabled CAL patients for the subjective domains of emotional and mental health.     

Evaluation of quality of life in oncology

Studies of quality of life are more and more becoming an integral part of cancer care in situations when treatment of cancer patients is burdened with significant toxicity, and results of survival of these patients are unsatisfactory. Modern concept of health-related quality of life measurement means consensus about its two basic features: multidimensionality of concept, and essentially subjective experience in a treated person. As a minimum, domains of physical, psychological and social are assessed, and the patient is considered to be the primary source of information. The most widely used instruments for quality of life assessment are questionnaires, especially developed for cancer patients, with supplemental items for particular diagnosis. These instruments must satisfy the basic psychometric properties-validity and reliability. Quality of life studies are focused mostly on phase III trials, where differences between treatment arms for tumour response and survival are expected to be small. Another approach is developed in parallel which, based upon quality of life measurement, initiates decisions for the treatment of a set of patients up to health policy level. In these "cost-utility" studies, efficacy and cost of the treatment, and improvement of patients' quality of life are independently estimated, and then integrated in medical decision making.     

Evaluation of quality of life in sarcoidosis patients

The Western blot method, using antigens from epimastigote forms of the Trypanosoma cruzi Y strain, was evaluated for the confirmatory diagnosis of Chagas' disease. Serum samples were obtained from 136 chagasic patients (Group I), 23 patients with inconclusive serologic results for Chagas' disease (Group II), 53 patients with other diseases (Group III), and 50 healthy individuals (Group IV). The Western blot results for Group I gave a confirmatory diagnosis of Chagas' diseases in 118 (86.80%), an indeterminate pattern of reactivity in 16 (11.76%), and a negative pattern in only two (1.47%). Of the samples from Groups II, III and IV, none had a positive result in the Western blot; 60.86%, 52.83%, and 16.0%, respectively, showed indeterminate results; and 39.13%, 47,16% and 84,0%, respectively, showed negative results. The Western blot method showed a sensitivity of 86.60%, a specificity of 100.0%, a positive predictive value of 100.0%, and a negative predictive value of 73.50%, and the concordance coefficient kappa was high (0.7789). The results suggest that the previous serologic results for Chagas' disease could be confirmed by Western blot for the detection of specific antibodies to T. cruzi antigenic fractions, which may reduce the medical, legal, and social consequences of an inconclusive serologic result for Chagas' disease and also underscore the need for additional studies for continued efforts in the development of an ideal standard confirmatory test for Chagas' disease.     

Health status and quality of life following cardiac transplantation

There is little information regarding the functional status and quality of life of cardiac transplant patients. This investigation is the largest study describing outcome up to 10 years after cardiac transplantation. We conducted a cross-sectional survey of 200 cardiac transplant recipients using the Sickness Impact Profile and a supplementary questionnaire. The response rate was 48%. The median duration post-cardiac transplantation was 2.3 years (range, 0.5 to 9.7 years). The median age was 53 years (range, 27.1 to 68.7). In comparison to previously published studies, our sample of cardiac transplant recipients had worse quality of life than normals, similar scores to cardiac arrest survivors and post-myocardial infarction patients, and better quality of life than patients with low back pain. We found that those not working (44%) reported a lower quality of life. Musculoskeletal-neurologic complaints were highly prevalent, with generalized weakness in 54% responding, fatigue in 42%, and low back pain in 37%. Lower quality of life was found in patients reporting a higher number of musculoskeletal-neurological disorders. We conclude that there are specific areas for rehabilitation intervention in patients post-cardiac transplantation, and suggest areas for future research directed towards enhancing quality of life for cardiac transplant recipients.     

Evaluation of health-related quality of life in hospitalized schizophrenics

N-ribohydrolases and transferases act on nucleosides, nucleotides and oligonucleotides to effect base removal. Advances in mechanistic and structural analysis have established that enzymes of N-riboside scission act by combinations of leaving-group and ribosyl activation. Alternative O-riboside substrates have been developed for mechanistic diagnosis. Transition-state structures have been determined, and powerful inhibitors have been designed from structural and transition-state information.     

Health promotion, wellness programs, quality of life and the marketing of psychology.

This paper focusses on 15 yrs of research into the definition of quality of life and the factors that influence it. Four studies with 3 samples of 780 residents of London, Ontario, are presented. Results suggest (1) that different measures of global quality of life and well being are measuring essentially the same thing; (2) that there may be some basis for viewing the mental health component measure on the SF-36 Health Survey as highly indicative of quality of life; and (3) that important psychological factors contributing to health and quality of life include such personality factors as hardiness, self-esteem, optimism, locus of control, and extraversion. The application of the research to health promotion and the development of wellness programs is discussed. A strategy to enhance quality of life using the Quality of Life Questionnaire, and group interventions to enhance specific personality characteristics are described. The current research program is used as a case study to demonstrate some of the factors that contribute to the invisibility of psychology. (PsycINFO Database Record (c) 2010 APA, all rights reserved)     

Evaluation of quality of life and symptoms after translabyrinthine acoustic neuroma surgery

OBJECTIVE: This study aimed to describe the consequences of acoustic neuroma surgery in terms of symptoms and quality of life. STUDY DESIGN: This study was a retrospective case review. SETTING: The surgery was conducted in Uppsala, Sweden. PATIENTS: A consecutive sample of acoustic neuroma patients operated on between 1988 and 1994. INTERVENTION: All patients had been operated on with the translabyrinthine technique. MAIN OUTCOME MEASURES: A questionnaire was constructed including questions about the surgery and symptoms. The House and Brackmann scale was used for grading facial function and the Brackmann and Bars scale was used for self-assessment of facial function. RESULTS: Follow-up data were collected by a postal questionnaire sent out and returned by 141 patients, which yielded a 90% response rate. Normal to moderately impaired facial function (House I-III) was evident in 85.2% of patients, although residual facial problems were reported. Most considered hearing to be worse after surgery (80%), and tinnitus was found in 60% of the sample. Balance problems (45%), dizziness (19%), and headache/pain (22%) were also reported. Work ability was affected in 23%, and 37% reported a continued need for medical consultations, mainly because of facial problems and pain. Most (89%) were pleased with the preoperative information. CONCLUSIONS: This study showed that few patients with acoustic neuroma had experienced negative social consequences after surgery. Although not linked to the operation, residual symptoms were reported that may necessitate further rehabilitation.     

Spanish study of quality of life in migraine (I). Profile of the patient with migraine attending neurology clinics

This study reports our experience with 67 intrauterine transfusions (IUTs) carried out for 27 cases of severe Rh alloimmunization, which could be useful to other developing countries with similar situations. Most of the mothers were from sections of India other than Mumbai, their socioeconomic status was low, and they were referred during the second or third trimester. The mean gestation age at first IUT was 27+/-2.9 weeks and maternal anti-D titer ranged from 1:32 to 1:512. Ultrasonography (USG) was normal in eight cases, but showed minimal or gross ascites in 8 and 11 cases, respectively. The mean +/- SD hematocrit (HCT) in three groups defined by USG was 23.5+/-1.7, 15.9+/-4, and 12+/-5.9, respectively. Amniotic fluid analysis, which proved to be an important investigation, indicated IUT in eight cases having normal USG. Six cases were severely anemic (Hb deficit >7 g/dl). By fetal cell staining, the percentage of the donor's red cells in the fetal circulation was determined. Besides Hb, blood group, direct antiglobulin test, and mean cell volume, this parameter was also useful in assessing efficacy of IUT and the need for an exchange transfusion after birth. Of 11 fetuses having gross ascites, eight and one each from the remaining two groups, were stillborn. One death may be procedure related. Two neonates died due to hemorrhagic disorder and prematurity. The overall survival rate was 55.6%. Late referral, severe Rh alloimmunization, volume overload, delay in IUT because of nonavailability of blood and use of nonirradiated blood could be the reasons for the poor outcome. Strategies for improving results are discussed.     

Investigating the relationship between pain and discomfort and quality of life, using the WHOQOL

The aim of this study was to examine the impact of pain on quality of life and its components in a representative sample of 320 well people, and patients selected from all major categories of illness. Quality of life was assessed using a new, multidimensional, multilingual, generic profile designed for cross-cultural use in health care, i.e. the WHOQOL. Within the WHOQOL, pain and discomfort is one of 29 areas or facets of quality of life, grouped into six domains. It was found that pain and discomfort made a significant impact on perceptions of general quality of life related to health. Furthermore, the presence of pain affected perceptions of five of the six domains of quality of life; the domain of spirituality, religion and personal beliefs being the exception. When quality of life is assessed, negative feelings are most closely associated with reports of pain and discomfort than any other facet. But quality of life surrounding pain and discomfort is more fully explained by the inclusion of six additional facets; the availability of social care, mobility, activities of daily living, positive mood and to a lesser extent, sleep and dependence on medication. Together, these seven facets represent criteria against which the success of pain treatments may be evaluated. As predicted, those who were pain-free had significantly better quality of life than those in pain. A longer duration of pain is associated with increasingly poorer quality of life. Intense affective pain is particularly detrimental to a good quality of life. The psychometric properties of the pain and discomfort facet of the WHOQOL and WHOQOL-100 were assessed. Internal consistency (reliability), discriminant and criterion/concurrent validity were found to be good to excellent, justifying the use of this instrument with a range of chronic and acute pain patients.     

Organ preservation and quality of life: the quality of life of patients undergoing radiation therapy

In the definition of quality of life (QL) conventional medical indicators (rate of cure, disease-free survival, side-effects, costs) should be combined with those of the patient's personality the impact of the disease, the level of satisfaction, the general health conditions. This assessment being complex, obviously needs an integration of competences for correct decision making in diagnosis and treatment. In oncology, numerous attempts have been made towards the systematization of toxicity in radiotherapy based on physical and functional rather than multidimensional criteria. However the categorization of possible side-effects according to scoring systems already marks an improvement towards the quality assurance of care and thus the patient's quality of life.     

Measuring quality of life for patients with terminal illness: the Missoula-VITAS quality of life index

OBJECTIVE: To investigate whether fibronectin fragments (Fn-fs), shown to damage cultured cartilage, can be found in cartilage from patients with osteoarthritis (OA) or rheumatoid arthritis, or can be generated from fibronectin (Fn) within synovial fluids or from Fn in the matrix of cultured cartilage. To also determine whether cartilage or synovial fluid Fn-fs are active and, thus, could contribute to cartilage damage in vivo. METHODS: Fn-fs were immunochemically identified in cartilage extracts from patients with OA or rheumatoid arthritis or in bovine cartilage cultured with IL-1 alpha or in bovine synovial fluids treated with stromelysin-1 (MMP-3). The effect of removal of Fn-fs from OA synovial fluids was tested by passing fluids over an anti-Fn column and adding the resultant fluids to bovine cartilage cultures to measure proteoglycan (PG) degradation. Gelatin-Sepharose purified Fns from bovine plasma, synovial fluid or cartilage were digested with MMP-3 and the Fn-fs tested for degradation of PG in cultured cartilage. RESULTS: Extracts of cartilage from patients with rheumatoid arthritis or with OA contained a range of Fn-fs. Removal of Fn-fs from OA synovial fluids significantly reduced the resultant damage when the fluids were added to cultured cartilage. Addition of IL-1 alpha to cultured cartilage or of MMP-3 to synovial fluids enhanced generation of Fn-fs. Fn-fs, whether derived from bovine plasma or synovial fluid or cartilage Fns, damaged cartilage. CONCLUSIONS: These data demonstrate that although Fn-fs could be generated in vivo within synovial fluids and Fn-fs found in OA synovial fluid may contribute to cartilage damage in vivo, Fn-fs could also be generated within cartilage and amplify cartilage damage. Thus, Fn-fs may be both autocrine and paracrine regulators of cartilage metabolism.     

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.     

Evaluation of the quality of life in pediatrics: how to collect the point of view of children

There are very few available child quality of life questionnaires. We describe here a French questionnaire (AUQUEI) which consists of a structured format scale (26 items). The first part of the questionnaire studies child satisfaction. Response levels are measured by checking faces expressing different emotional states. The validation is satisfactory, and the questionnaire is able to differentiate healthy children from sick children (HIV positive). A second part of the questionnaire focuses on the child's own quality of life, and is based upon open-ended questions. This second approach allows to broaden the structured format scale and improves the understanding of the child's quality of life. It constitutes a necessary complement to the first part as it avoids using mechanically adult-specific concepts for children. We also found it to be sensitive enough to distinguish sick children from healthy ones. The AUQUEI questionnaire with its two complementary parts appears to be a potentially valuable tool to better understand the experience of sick children, in the various aspects of their life, and to follow their evolution.     

Evaluation of the short-form 36-item questionnaire to measure health-related quality of life in patients with COPD

STUDY OBJECTIVE: To evaluate the short-form 36-item questionnaire (SF-36) as an instrument for measuring health-related quality of life (HRQL) in patients with symptomatic COPD. DESIGN: Observational data at a single point in time. SETTING: Outpatient pulmonary clinic. PATIENTS: Fifty male patients with COPD and no significant comorbidity. MEASUREMENTS AND RESULTS: HRQL was assessed with the SF-36, which consists of 36 questions that cover nine health domains. Clinical ratings of dyspnea were measured by the multidimensional baseline dyspnea index (BDI). Pulmonary function tests included forced vital capacity (FVC), forced expiratory volume in 1 s (FEV1), and maximal inspiratory mouth pressure (PImax). The mean (+/- SD) age of the patients was 72 +/- 8 years. The BDI focal score was 5.6 +/- 2.3, FEV1 was 1.32 +/- 0.60 L (48 +/- 22% pred), and PImax was 62 +/- 23 cm H2O. The BDI focal score was significantly correlated with seven of nine components of the SF-36 (range of r, 0.42 to 0.91; p < 0.05). The FEV1 percent of predicted and PImax were significantly correlated with five of nine health components (range of r, 0.30 to 0.65 and 0.31 to 0.61, respectively). Using linear regression model analysis with the different SF-36 components as the dependent variable and BDI, FVC, FEV1, and PImax as independent variables, the BDI score was the only significant predictor of social and physical functioning, role-physical, vitality, pain, health perceptions, and health transition (p < 0.05). CONCLUSIONS: The SF-36 is a valid instrument to measure HRQL in patients with COPD. The severity of dyspnea but not respiratory function was a significant predictor of various components of HRQL.