The stability of preferences for life-sustaining care among persons with AIDS in the Boston Health Study

In 1982, the World Health Organization (WHO) identified inadequate relief from cancer pain as an international health problem. WHO recommended that governments develop and implement national policies and programs for cancer pain relief. This report evaluates national health policy and the systems of health care delivery in relation to cancer pain management in the new South Africa. This field study included multiple methods of data collection: analysis of documents, field trips with participant observation in sites of care delivery, focused interviews, and in-depth interviews of key informants. The purposive sample of key informants (n = 33) represented multiple stakeholders in a variety of settings. Strengths of the developing health policy include specific recommendations related to palliative care; the shift to universal primary care; policies to support drug availability; the inclusion of morphine and codeine as essential drug at the primary health care level; and the development of a national standard related to cancer pain management. Health services are characterized by two parallel systems of care (private and public) with numerous vestiges of the inequities of apartheid. The management of pain varies by provider and setting; major problems with access exist in the rural areas. Health services in South Africa have been plagued by inequity and inadequate resources. New health policies have set a path to ensure universal access to health care including palliative care for cancer. Their successful implementation is the next necessary step toward improving health services and alleviating the suffering of increasing numbers of individuals with cancer.     

The impact of asthma on health-related quality of life

Although a substantial body of epidemiological and economic literature on asthma exists, relatively little is known about the impact of asthma on health-related quality of life (HRQL). The purpose of this review was to synthesize results from recent studies, profile the factors influencing HRQL in asthmatics, discuss the impact of treatment on HRQL outcomes, and offer recommendations for further research. The results of this review support the premise that asthma can adversely affect the physical, psychological, and social domains of HRQL. Published data suggest that females, those from lower socioeconomic groups, and ethnic minorities experience poorer quality of life as a result of their asthma symptoms. Results of published clinical trials indicate treatment regimens can have a significant impact on HRQL outcomes. Pharmacological interventions appear to effect change primarily in the physical domain and behavioral interventions lead to improvements in both physical and psychosocial domains. Future research should focus on precise a priori delineation of research hypotheses, including the selection of primary and secondary endpoints, the clarification and consistent application of criteria for defining asthma severity, thoughtful selection of HRQL instruments appropriate for the research hypotheses and target population, and careful delineation of clinically meaningful change scores of asthma-specific outcome measures.     

The relationship between glycemic control and health-related quality of life in patients with non-insulin-dependent diabetes mellitus

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.     

MOS-SF-36 in evaluating health-related quality of life in alcohol-dependent patients

OBJECT: It is possible to diagnose hydrocephalus prenatally based on the morphological appearance of the fetus on neurodiagnostic images; however, the prognosis of this disease shows wide variation. The authors previously proposed a classification system for the prediction of postnatal outcome based on progression of hydrocephalus and affected brain development, known as the "Perspective Classification of Congenital Hydrocephalus (PCCH)." In this study the authors have used their classification system to analyze long-term follow-up results obtained in each clinicoembryological stage of fetal hydrocephalus. METHODS: Sixty-one fetuses with hydrocephalus were examined to predict postnatal outcome by using this newly developed classification. The authors' recently developed method of using heavily T2-weighted imaging with a superconducting magnet clearly delineated the cerebrospinal fluid (CSF) space and the malformed brain and spinal cord. Imaging was achieved in less than 1 second per slice and required no sedation of the fetus. The technique appears to be simple and good at delineating intrauterine anatomy. Hydrocephalus was diagnosed in two fetuses at PCCH embryological Stage I (8-21 gestational weeks), in 28 fetuses at Stage II (22-31 weeks), and in 31 fetuses at Stage III (32-40 weeks). Among these 61 fetuses, clinicopathological typing showed that 19 had primary hydrocephalus (nine in Stage II and 10 in Stage III), 34 had dysgenetic hydrocephalus (two in Stage I, 16 in Stage II, and 16 in Stage III), and eight had secondary hydrocephalus (three in Stage II and five in Stage III). When the hydrocephalic state developed during PCCH Stage I or II, the prognosis was very poor, and only one of 18 fetuses with dysgenetic hydrocephalus and none of three fetuses with secondary hydrocephalus had an acceptable postnatal outcome. Even within the same category or subtype of fetal hydrocephalus, such as primary hydrocephalus in its simple form, or hydrocephalus with spina bifida aperta (myeloschisis), the postnatal outcomes differed depending on the time of onset of hydrocephalus. When the diagnosis of hydrocephalus was made during PCCH Stage II, the fetuses had a poorer postnatal outcome compared with those at Stage III (p < 0.05). CONCLUSIONS: It is emphasized that postnatal prognosis is not simply a function of the form of the diagnosis but is also dependent on the progression of hydrocephalus and the degree to which that process affects neuronal development. Early decompressive procedures, conventionally performed after but, hopefully, performed before birth, are indicated to obtain the optimal postnatal prognosis of fetuses with hydrocephalus diagnosed at PCCH Stage II.     

Effect of domperidone on the health-related quality of life of patients with symptoms of diabetic gastroparesis

OBJECTIVE: To describe the health-related quality of life (HRQOL) of patients with insulin-treated diabetes and symptoms of diabetic gastroparesis and to assess the impact of domperidone on HRQOL in these patients. RESEARCH DESIGN AND METHODS: This two-phase multicenter study was part of a safety and efficacy investigation. Phase I involved 4-week single-blind treatment with domperidone 20 mg q.i.d. (n=269). Patients demonstrating significant symptomatic improvement (n=208) continued to phase 11, a 4-week, double-blind, parallel-group study with patients receiving placebo (n=103) or domperidone (n=105). Patients completed the Medical Outcomes Study Short-Form-36 Health Survey at selection and at the end of each phase. Physical component summary (PCS) and mental component summary (MCS) scores served as primary parameters, and the eight subscales were secondary parameters. RESULTS: HRQOL scores of subjects enrolled in the trial were significantly lower than norms from the general population and people with diabetes (P < 0.001). Subjects experiencing symptomatic improvement after 4 weeks of single-blind treatment demonstrated significant improvement in all HRQOL parameters (P < 0.001); PCS, MCS, and six subscale scores of nonresponders did not change. Between-group change score differences were significant for PCS, MCS, and seven subscales (P < 0.05 to P < 0.001). During phase II, the domperidone group maintained their HRQOL; the placebo group showed a significant decline in PCS and four subscales (P < 0.05). The between-group difference in the PCS score change was statistically significant (-1.77 vs. 0.65, P=0.05). CONCLUSIONS: Results suggest that patients with symptoms of diabetic gastroparesis experience notable HRQOL impairment and that symptomatic relief with domperidone is accompanied by improvements in HRQOL that can be sustained over 4 weeks of treatment.     

Reliability of two measures of health-related quality of life in patients with multiple sclerosis

Fourty-five patients with progressive FIGO IIIc (36/45 pts.) and IV (9/45 pts.) ovarian cancer, who were in progression under prior cisplatin-based chemotherapy, were submitted to aortic infusion and stop flow infusion with the same drugs. 36/45 patients (80%) had four-quadrant and 9/45 patients (20%) had two-quadrant peritoneal carcinosis, 33/45 with severe ascites. Overall clinical response was 93%: 5/45 CR (11%), 21/45 PR (47%), 16/45 MR (35%). Complete resolution of ascites occurred in 9/33 patients (27%), a substantial reduction of ascites of more than 50% in 14/33 patients (43%). Median survival time was 12.5 months, median time to progression 8.6 months. Toxicity was minimal and in most patients performance and quality of life improved shortly after therapy.     

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.     

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.     

Use of hospital services by AIDS patients with psychiatric illness

The purpose of this study was to assess the effect of psychiatric illness on length of stay and patterns of admission among AIDS patients hospitalized for medical illnesses. Medical records were abstracted for AIDS patients admitted to hospitals in Washington State from 1990 through 1992. Psychiatric comorbidity was defined by the presence of an International Classification of Disease-9 code reflecting psychiatric illness. Medical morbidity was addressed using CD4 count and AIDS-defining illnesses as markers of disease severity. Of 2834 admissions, 15% included one or more psychiatric diagnoses. Psychiatric illness (F 39.1; df 1,2830; p < 0.001) and discharge disposition (F 81.2; df 2,2830; p < 0.001) contributed significantly to the model, explaining increased length of stay (F 67.2; df 3,2830; p < 0.001). Future research needs to address the possible etiology of psychiatric comorbidity's contribution to length of stay and the effect on quality and cost of care.     

Health-related quality of life in patients served by the Department of Veterans Affairs: results from the Veterans Health Study

In a curative resection for advanced sigmoid or rectal cancer, an extensive dissection of the regional lymph nodes is generally required. This often necessitates the removal of the autonomic nerves around the inferior mesenteric artery. The present study was done in an attempt to clarify the influence of a neurectomy around the inferior mesenteric ganglion and plexus on the motility of the colon. In eight dogs, we resected the ganglion and plexus around the inferior mesenteric artery, together with an implantation of strain gauge force transducers in various parts of the colon, and 7-10 days later, colonic motility was examined. The percentage of contractile states and contractile forces increased at both the distal colon in fasting dogs, as well as at the middle colon in the late postprandial period. At the distal colon, contractile forces were noted in the early and late postprandial periods. These contractile abnormalities at the middle and distal colon may thus explain the frequent bowel movements or diarrhea often observed after extensive surgery in patients with sigmoid or rectal cancer.     

Reduction of health-related quality of life in chronic hepatitis C and improvement with interferon therapy. The Consensus Interferon Study Group

The natural history, prognosis, and clinical significance of chronic hepatitis C are highly variable and somewhat controversial. The purpose of this study was to evaluate the effect of chronic hepatitis C infection on patients' perceptions of health-related quality of life (HRQOL) and to evaluate whether treatment with interferon improves HRQOL. A total of 642 patients with compensated liver disease who were enrolled in a multicenter trial of interferon therapy for chronic hepatitis C had evaluation of HRQOL using the SF-36 and other instruments derived from the Medical Outcomes Study (MOS). These instruments were self-administered by patients at baseline and at the end of a 24-week post-treatment observation period after 24 weeks of interferon treatment. Patients with chronic hepatitis C were compared with healthy controls (n = 750) selected from a representative sample of adults in the United States. Unadjusted and age/gender-adjusted results were similar, as were analyses using parametric or nonparametric methods. Compared with healthy controls, patients with chronic hepatitis C at baseline had lower HRQOL on all eight scales of the SF-36 (P <.001 for all). Patients without cirrhosis (n = 284 ) showed similar although slightly smaller differences. The differences were highly significant, clinically and socially relevant, and greatest for those scales that were more reflective of physical than mental or emotional disease. Patients who had a sustained viral response to interferon therapy (n = 41) exhibited marked improvements in HRQOL, and these improvements exceeded those of nonresponders on 13 of 14 HRQOL scales (8 were statistically significant). Similar improvements were noted in patients with sustained biochemical responses. The authors concluded that patients with chronic hepatitis C with or without cirrhosis have markedly reduced HRQOL. Patients who had a sustained response (virological or biochemical) to interferon therapy experienced significant improvements in perceived wellness and functional status. Successful interferon therapy provides meaningful improvements in HRQOL in patients with chronic hepatitis C.     

Evaluation of the RFIPC, a disease-specific health-related quality of life questionnaire, in Swedish patients with ulcerative colitis

BACKGROUND: We wanted to characterize a Swedish version of the Rating Form of Inflammatory Bowel Disease Patient Concerns (RFIPC) with regard to validity, reliability, and responsiveness. METHODS: Two hundred and three consecutive patients with ulcerative colitis were studied. Health-related quality of life (HRQOL) was measured with the disease-specific questionnaire, the RFIPC, and a general questionnaire, the Sickness Impact Profile (SIP). Concerns about general well-being were also reported. Disease activity was measured by means of symptom cards, laboratory tests, and two clinical indices for disease activity. RESULTS: Test-retest reliability using Spearman's r (rs) was 0.79, and internal consistency measured with Cronbach's alpha was 0.95. RFIPC had a fair correlation with concerns about general well-being (rs = 0.69, P < 0.001). There was also a stronger correlation with another measure of HRQOL, the overall SIP score (rs = 0.43), than with measures of disease activity such as stool frequency (rs = 0.28) and sigmoidoscopic grading (NS). The group of patients in relapse had a higher RFIPC sum score than patients in remission (P = 0.001). Measures of HRQOL had a low correlation with disease activity and did not respond to changes in disease activity. CONCLUSION: The Swedish version of the RFIPC is a valid and reliable measure of HRQOL. The SIP and the RFIPC have a good discriminative ability between groups of patients in remission and in relapse. However, they do not seem to be useful in predicting the disease activity or change in disease activity over time in the individual patient.     

Evaluating health-related quality of life in patients with facial acne: development of a self-administered questionnaire for clinical trials

Although psychosocial aspects of skin diseases are well known, disease-specific questionnaires validated for use in clinical trials are not available to assess the impact of facial acne on health-related quality of life or to evaluate therapeutic change. Development of such an instrument was undertaken and included item generation, reduction and pilot-testing phases. By interviewing acne subjects and dermatologists and literature review, 168 possible items were identified. Next, 165 acne subjects identified which items affected them and rated importance on a 5-point scale. Reduction to a brief questionnaire was performed by evaluating patient-perceived importance and factor analysis; four domains were identified (self-perception, role-emotional, role-social, acne symptoms). After pilot-testing for comprehension in acne subjects, further revisions were made to improve clarity and applicability. The resulting instrument takes 10 minutes to complete, and consists of 24 questions assessing how acne affected certain aspects of patients' lives during the past week on a 7-point scale. Thus, an instrument with excellent content validity was developed to assess health-related quality of life in patients with facial acne, and is comprised of statistically meaningful items of importance to patients. Other measurement characteristics are being assessed in a recently initiated study to evaluate test-retest reliability and responsiveness to therapy.     

The influence of progress in the treatment of severe burns on the quality of life

The problems related to burns treatment can be considered among the oldest and most passionating in history of medicine. Since the early forties amazing progresses have been done in the comprehension of the physiopathology of burns. The fast development of resuscitating techniques determined a remarkable reduction of mortality in the first phase; in a similar way through new concepts in the project and construction of intensive care facilities dedicated to burns, where patients can be isolated and a high standard of environmental control can be guaranteed, together with new topical and systemic antibacterial treatment protocols, a significant reduction of infectious complications has been achieved. Concerning surgical treatment early tangential excision and cultured epidermal grafts can be considered the cornerstones of burn therapy. Quality of life of burnt patients have been greatly ameliorated by these technical advances. Burn sequelae however remain the main concern of survivors because of the many controversial aspects of burn scar physiopathology and treatment. Along my career many endeavours I dedicated in this important research field. I will then report the results of most interesting clinical and experimental studies carried out in the last 30 years by our group in collaboration with basic researchers. All the work done in this domain enhance our hope that good results can really improve quality of life in burns: this is the goal for those who dedicated the whole life to relieve the suffering of these badly injured patients.     

Side effects of alpha-interferon therapy and impact on health-related quality of life in children with chronic viral hepatitis

BACKGROUND: Interferon (IFN) is standard therapy for chronic viral hepatitis in children. The aim of this study was to evaluate the side effects of alpha-interferon (IFN) in 94 consecutive children (58 males; age range, 3 to 14 years) affected by chronic viral hepatitis treated with different schedules ranging from 3 to 10 MU and from 3 to 12 months, and the impact of this therapy on health-related quality of life. METHODS: Side effects were evaluated with clinical and laboratory examinations and were recorded on a diary card. The health-related quality of life was evaluated with a modified version of the Sickness Impact Profile. RESULTS: All patients experienced at least one adverse reaction to IFN treatment; 80% had more than five side effects. There were no life-threatening reactions. Three children experienced severe reactions (febrile seizure, severe hypertransaminasemia and relapsing episodes of epistaxis, respectively) that required permanent IFN withdrawal. Another child had a febrile seizure requiring temporary IFN withdrawal. In seven children the neutrophil count fell below 1000/mm3 and promptly increased when IFN was temporarily discontinued. The remaining children had mild or moderate clinical and/or laboratory adverse reactions. Age, sex, viral etiology of chronic hepatitis and response to therapy were not significantly associated with the appearance of side effects. The pre-IFN health-related quality of life was good in all children; it deteriorated significantly during IFN therapy and returned to basal standards within 3 months after IFN withdrawal. No patient required suspension of IFN therapy because of worsening of health-related quality of life. CONCLUSION: Children have a low risk of developing severe IFN-induced side effects. Adverse reactions and worsening of health-related quality of life were tolerable and did not seem to be a limiting factor for IFN therapy in young candidates.     

The unequal clinical profile, quality of life and hospital mortality in patients undergoing aortocoronary bypass in the public and private centers of Catalonia. The CIRCORCA Study

INTRODUCTION AND AIMS: The influence of the type of health care funding and management of hospital centres on hospital mortality in coronary artery bypass surgery (CABG) has not been analyzed in detail. We therefore assessed clinical and quality of life preoperative profiles and in-hospital mortality in public and private patients undergoing coronary bypass surgery in Catalonia. METHODS: Clinical questionnaires, Duke Activity Status Index (DASI) and SF-36 were preoperatively administered to all patients undergoing first coronary bypass surgery without associated procedures in Catalonia between November 1996-June 1997. In-hospital morbidity and mortality were recorded. RESULTS: Predictors of in-hospital death, including DASI, SF-36 and comorbidity scores, were significantly worse in public than in private patients. In-hospital mortality rate was more than ten times greater in public than in private patients (8.2% vs 0.7%; p < 0.001). Multivariate analysis identified private funding of health care, among others, as an independent predictor of in-hospital survival. Non evidence-based indications for surgery were significantly more common in private than in public patients (6% vs 0.7%, p < 0.001). CONCLUSIONS: a) In catalonia, the risk profile of public patients undergoing coronary bypass surgery was significantly higher than that of private patients, accounting, at least in part, for a remarkable mortality difference; b) non evidence-based indications for surgery were more common in private than in public patients; c) these unequal patterns raise questions about the adequacy of care and referral patterns in both private and public sectors.     

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.     

Randomized trial of physical exercise alone or combined with bright light on mood and health-related quality of life

OBJECTIVE: To present our experience with liver fine needle aspiration (FNA) diagnosis based on Riu's stain. STUDY DESIGN: We reviewed a total of 322 liver fine needle aspirates from 286 patients seen in a seven-year period from April 1990 to April 1997 at Koo Foundation Sun Yat-Sen Cancer Center, Taipei. Surgical and/or clinical follow-up was available for confirmation in 292 aspirates. RESULTS: The cytologic diagnosis was categorized into four groups: benign in 81 cases, suspicious in 13, malignant in 225, and inadequate specimen in 3 cases. There were 16 false negative and no false positive diagnoses. Two suspicious aspirates were negative. Our results showed a sensitivity of 93.3% and a specificity of 100% for the detection of malignancy. If suspicious cases were considered positive, the specificity decreased to 95.1%, while the sensitivity increased to 93.6%. Among 87 hepatocellular carcinomas (HCCs) in our series, correct FNA diagnosis was made in 84 cases with an accuracy of 96.6%. Out of 135 cases of non-HCCs, 1 was incorrectly diagnosed. The accuracy of identifying a liver malignancy as non-HCC was 99.3%. CONCLUSION: Cytologic features of HCC are well demonstrated by Riu's stain, with high accuracy in identifying them. Liver FNAs using Riu's stain combined with cell block study and clinicopathologic correlation can achieve very high sensitivity and specificity in the detection of hepatic malignancies.