Showing papers on "Quality of life published in 1998"

Reliability and validity testing of the Michigan Hand Outcomes Questionnaire.

Abstract: In this study, psychometric principles were used to develop an outcomes questionnaire capable of measuring health state domains important to patients with hand disorders. These domains were hypothesized to include (1) overall hand function, (2) activities of daily living (ADL), (3) pain, (4) work performance, (5) aesthetics, and (6) patient satisfaction with hand function. An initial pool of 100 questions was pilot-tested for clarity in 20 patients; following factor analysis, the number of questions was reduced to a 37-item Michigan Hand Outcomes Questionnaire (MHQ). The MHQ, along with the Short Form-12, a generic health status outcomes questionnaire, was then administered to 200 consecutive patients at a university-based hand surgery clinic and was subjected to reliability and validity testing. The mean time required to complete the questionnaire was 10 minutes (range, 7–20 minutes). Factor analysis supported the 6 hypothesized scales. Test-retest reliability using Spearman's correlation demonstrated substantial agreement, ranging from 0.81 for the aesthetics scale to 0.97 for the ADL scale. In testing for internal consistency, Cronbach's alphas ranged from 0.86 for the pain scale to 0.97 for the ADL scale (values >0.7 for Cronbach's alpha are considered a good internal consistency). Correlation between scales gave evidence of construct validity. In comparing similar scales in the MHQ and the Short Form-12, a moderate correlation (range, 0.54–0.79) for the ADL, work performance, and pain scales was found. In evaluating the discriminate validity of the aesthetics scale, a significant difference (p=.0012) was found between the aesthetics scores for patients with carpal tunnel syndrome and patients with rheumatoid arthritis. The MHQ is a reliable and valid instrument for measuring hand outcomes. It can be used in a clinic setting with minimal burden to patients. The questions in the MHQ have undergone rigorous psychometric testing, and the MHQ is a promising instrument for evaluation of outcomes following hand surgery.

The UCLA Prostate Cancer Index: development, reliability, and validity of a health-related quality of life measure.

Abstract: Objectives.The need for accurate measures of health-related quality of life (HRQOL) in men treated for prostate cancer is of paramount importance because patients may survive for many years after their diagnosis. Hence, interest has increased in choosing treatments that optimize both the quality

The proxy problem: Child report versus parent report in health-related quality of life research

Abstract: This study evaluates the agreement between child and parent reports on children's health-related quality of life (HRQoL) in a representative sample of 1,105 Dutch children (age 8-11 years old). Both children and their parents completed a 56 item questionnaire (TACQOL). The questionnaire contains seven eight-item scales: physical complaints, motor functioning, autonomy, cognitive functioning, social functioning, positive emotions and negative emotions. The Pearson correlations between the child and parent reports were between 0.44 and 0.61 (p < 0.001). The intraclass correlations were between 0.39 and 0.62. On average, the children reported a significantly lower HRQoL than their parents on the physical complaints, motor functioning, autonomy, cognitive functioning and positive emotions scales (paired t-test: p < 0.05). Agreement on all of the scales was related to the magnitude of the HRQoL scores and to some background variables (gender, age, temporary illness and visiting a physician). According to multitrait-multimethod analyses, both the child and parent reports proved to be valid.

The Development and Evaluation of a Disease-Specific Quality of Life Measurement Tool for Shoulder Instability The Western Ontario Shoulder Instability Index (WOSI)

Abstract: The purpose of this study was to develop a valid, reliable, and responsive disease-specific quality of life measurement tool for patients with shoulder instability. Development included 1) identification of a specific patient population; 2) generation of issues specific to the “disease” (“items”) from reviewing the literature, interviewing health caregivers, and interviewing patients representing all demographics, disease type and severity, and treatments; 3) item reduction using patient-generated frequency-importance products and correlation matrices; and 4) pretesting the prototype instrument on 2 groups of 10 patients. The final instrument, the Western Ontario Shoulder Instability Index, has 21 items representing 4 domains. The instrument attributes (validity, reliability, and responsiveness) were evaluated. Construct validation demonstrated that this index correlated predictably with other measures. Reliability was very high at 2 weeks and 3 months, and the index was more responsive (sensitive to chan...

Swedish obese subjects (SOS)--an intervention study of obesity. Two-year follow-up of health-related quality of life (HRQL) and eating behavior after gastric surgery for severe obesity.

Abstract: OBJECTIVE: To examine the effects of weight loss on health-related quality of life (HRQL) in subjects with severe obesity. DESIGN: Controlled clinical trial of the outcomes of surgical vs conventional weight reduction treatment. SUBJECTS: The first 487 surgical cases and their conventionally treated, matched controls were followed for two years in the Swedish Obese Subjects (SOS) intervention study. MEASUREMENTS: A battery of generic and study-specific self-assessment instruments or subscales was used to characterize HRQL in the severely obese (BMI) ≥34 kg/m2 for males and BMI ≥38 kg/m2 for females). Measures of general health perceptions (general health rating index; current health), mental well-being (mood adjective check list; pleasantness, activation and calmness), mood disorders (hospital anxiety and depression scale; anxiety and depression) and social interaction (sickness impact profile), were supplemented by obesity-specific modules on obesity-related psychosocial problems and eating behavior (three-factor eating questionnaire; restrained eating, disinhibition and perceived hunger). Assessments were conducted prior to treatment and repeated after 6, 12 and 24 months. RESULTS: Poor HRQL before intervention was dramatically improved after gastric restriction surgery, while only minor fluctuations in HRQL scores were observed in the conventionally treated controls. Peak values were observed in the surgical group at 6 or 12 months after intervention with a slight to moderate decrease at the two-year follow-up. The positive changes in HRQL after two years were related to the magnitude of weight loss, that is, the greater the weight reduction, the greater the HRQL improvements. Eating behavior improved accordingly. CONCLUSION: Quality of life in the severely obese is improved by substantial weight loss. Most patients benefit from weight reduction surgery, while HRQL in surgical patients with minor reduction in overweight is less positive. Further research is needed to determine outcome predictors of the surgical management of severe obesity and to ensure that HRQL improvements are maintained.

Bariatric Analysis and Reporting Outcome System (BAROS)

Abstract: Background: The lack of standards for comparison of results was identified by the NIH Consensus Conference panellsts as one of the key problems in evaluating reports in the surgical treatment of severe obesity. The analysis of outcomes after bariatric surgery should include weight loss, improvement in comorbidities related to obesity, and quality-of-life (QOL) assessment. Definitions of success and failure should be established and the presentation of results standardized. Methods: A survey among experienced bariatric surgeons was conducted to study the reporting of results. The concept of evaluating outcomes by using a scoring system was introduced in 1997 and has now been refined further. Psychologists with expertise in bariatrics were asked to recommend a disease-specific instrument to analyze QOL after surgery. Results: The system defines five outcome groups (failure, fair, good, very good, and excellent), based on a scoring table that adds or subtracts points while evaluating three main areas: percentage of excess weight loss, changes in medical conditions, and QOL. To assess changes in QOL after treatment, this method incorporates a specifically designed patient questionnaire that addresses self-esteem and four daily activities. Complications and reoperative surgery deduct points, thus avoiding the controversy of considering reoperations as failures. Conclusions: The Bariatric Analysis and Reporting Outcome System (BAROS) analyzes outcomes in a simple, objective, unbiased, and evidence-based fashion. It can be adapted to evaluate other forms of medical intervention for the control of obesity. This method should be considered by international organizations for the adoption of standards for the outcome assessment of bariatric treatments, and for the comparison of results among surgical series. These standards could also be used to compare the long-term effects of surgery with nonoperative weight loss methods.

The Relationship Between Self-Determination and Quality of Life for Adults with Mental Retardation

Abstract: There is growing mindfulness in the fields of disability services, rehabilitation, education and psychology of the need to promote self-determination for individuals with mental retardation and developmental disabilities, based at least partially on the importance of this outcome for people to experience an enhanced quality of life. In the present study data were collected on the quality of life and self- determination of 50 individuals with mental retardation, and data were analyzed, using discriminant function analysis and correlational analyses, to determine the contribution of self -determination to quality of life and examine the relationship between these constructs. People who reported a higher quality of life were also identified as more self-determined. The results support the continued effort to promote self- determination for people with mental retardation and developmental disabilities.

Health-related quality of life in chronic disorders: a comparison across studies using the MOS SF-36.

Abstract: The purpose of this report is to examine health-related quality of life (HRQoL) as measured by the Medical Outcomes Study Short Form-36, across patient populations with chronic disorders and to compare quality of life (QoL) in these subjects with normative data on healthy persons. Six studies, within the Center for Research in Chronic Disorders at the University of Pittsburgh School of Nursing, in patients with urinary incontinence, prostate cancer, chronic obstructive pulmonary disease (COPD), acquired immune deficiency syndrome (AIDS), fibromyalgia and hyperlipidaemia provided the data for analysis. The results demonstrated that not only did the prostate cancer and hyperlipidaemia patients have the highest QoL across the chronic disorders, but their QoL was comparable to normative data on healthy persons. Homebound, elderly, incontinent patients had the lowest QoL for physical functioning, whereas patients hospitalized with AIDS had the lowest QoL in general health and social functioning. Patients with COPD had the lowest QoL in role-physical, role-emotional and mental health. Patients with fibromyalgia had the lowest QoL in bodily pain and vitality. Compared to normative data, patients with urinary incontinence, COPD, AIDS and fibromyalgia generally had lower QoL. Prostate cancer and hyperlipidaemia patients had QoL comparable to normative data. Compared to normative data, patients with urinary incontinence, COPD, AIDS and fibromyalgia had more variability for role-emotional. AIDS patients had more variability on physical functioning, bodily pain and social functioning compared to the normative data. These data suggest that patients with various chronic disorders may have QoL that is lower in most domains compared to a healthy population. However, there may be differences in the domains affected as well as the extent of variation across specific chronic disorders.

Quality of Life in Long-Term Survivors of Adult-Onset Cancers

Abstract: The long-term survival of cancer patients has risen dramatically during the last few decades, yet little is known about the quality of life experienced by these survivors. This paper reviews research on the quality of life in long-term cancer survivors to identify quality-of-life concerns in this population, to provide a critical evaluation of the literature, and to suggest areas for future research. Searches of computerized literature databases were conducted to identify all studies of quality of life in cancer survivors that were published in English language journals during the period from January 1, 1980, through February 12, 1998, and that were based on responses from individuals who have survived 5 or more years after the diagnosis of adult-onset cancers. Thirty-four papers were identified. Most studies utilized self-report questionnaires to measure quality of life. Although methodologies and cancer patient populations varied greatly, most studies showed that many survivors continue to experience negative effects of cancer and/or treatment on their daily lives well beyond the completion of therapy. Sexual functioning and/or satisfaction and psychological functioning were found to be concerns for many survivors. Several reports documented positive coping strategies and enhanced quality of life in long-term cancer survivors, supporting the need to measure positive aspects of quality of life as well as problems in this population. Study designs that more accurately measure quality of life among survivors of cancer by adjusting for the effects of aging and long-term therapy and the impact of second cancers should be utilized. Additional data are needed to understand the needs of long-term survivors, especially of those in groups underrepresented in published quality-of-life studies, and to determine what kinds of support survivors want.

Quality of life and preferences for treatment following systemic adjuvant therapy for early-stage breast cancer.

Abstract: PURPOSETo evaluate the quality of life (QOL) of breast cancer patients who survived 2 to 5 years following initiation of adjuvant cytotoxic and/or hormonal therapy and to characterize relationships between QOL and patient physical symptoms, sexual function, and preferences regarding adjuvant treatment.PATIENTS AND METHODSEighty-six patients who had completed systemic adjuvant therapy for early-stage breast cancer between 1988 and 1991 were surveyed by written questionnaire and telephone interview. Sociodemographic information was obtained for each patient, and patients were asked to complete the Functional Living Index-Cancer (FLIC), the Symptom Distress Scale (SDS), the Medical Outcomes Study (MOS) Short Form 36 (SF-36), a series of questions regarding sexual function, and a survey about preferences for adjuvant therapy in relation to possible benefit.RESULTSThe mean FLIC score among all patients was 138.3 (+/- 12.2), which suggests a high level of QOL. The reported frequency of moderate to severe sympto...

Quality of Life in Reflux and Dyspepsia patients. Psychometric documentation of a new disease-specific questionnaire (QOLRAD).

Abstract: OBJECTIVE To develop a disease-specific QOL instrument (QOLRAD) addressing patient concerns in gastroesophageal reflux disease (GERD) and dyspepsia. Patients. 759 male (45%) and female (55%) patients with a mean age of 48.4 years (sd 15.2) were used in the psychometric evaluation. MAIN OUTCOME MEASURES A pilot version of QOLRAD, the Gastrointestinal Symptoms Rating Scale (GSRS) and the SF-36 were completed prior to endoscopy. Items with a high ceiling effect, items measuring a different construct, i.e. with a low squared multiple correlation (R 0.80) with another item were removed. A confirmatory factor analysis was also performed. RESULTS The final questionnaire included 25 items depicting problems with emotions, vitality, sleep, eating/drinking, and physical/social functioning. The internal consistency reliability was high (alpha value overall 0.97, dimensions 0.89-94). Construct validity, i.e. the associations between similar constructs in the QOLRAD, the SF-36 and the GSRS scores was confirmed. Pain and symptom severity were markers of impaired QOL. The impact on health-related QOL was similar across the functional gastrointestinal disorders with the exception of patients with a normal endoscopy, who did slightly worse. CONCLUSION The QOLRAD is a short and user-friendly instrument with excellent psychometric properties. Its responsiveness to change in (AVMC1) clinical trials is currently being explored.

Development of a disease-specific health-related Quality of Life questionnaire for Sleep Apnea

Abstract: The Calgary Sleep Apnea Quality of Life Index (SAQLI) was developed to record key elements of the disease that are important to patients. All items felt to influence the quality of life of these patients were identified. Final questionnaire items were selected by interviewing 113 patients with sleep apnea and 50 snorers who rated each item on whether it was a problem and the importance of it to their overall quality of life. Items for the final questionnaire were selected based on the rank order of the frequency ximportance product. The rank ordering was similar across strata of disease severity and between sexes. The Calgary SAQLI has 35 questions organized into four domains: daily functioning, social interactions, emotional functioning, and symptoms. A fifth domain, treatment-related symptoms, can be added for clinical intervention trials to record the possible negative impacts of treatment. The SAQLI has a high degree of internal consistency, face validity as judged by content experts and patients, and construct validity as shown by its positive correlations with the SF-36 and the improvement in scores in patients successfully completing a 4-wk trial of continuous positive airway pressure. It includes items shown to be important to patients with sleep apnea and is designed as a measure of outcome in clinical trials in sleep apnea. Flemons WW, Reimer MA. Development of a disease-specific health-related quality of life questionnaire for sleep apnea.

Health-related quality of life in men with erectile dysfunction.

Abstract: OBJECTIVE: To assess health-related quality of life (HRQOL) DESIGN: Descriptive survey with general and disease-specific measures. The instrument contained three established, validated HRQOL measures, a validated comorbidity checklist,] and sociodemographics. The RAND 36-Item Health Survey 1.0 (SF-36) was used to assess general HRQOL. Sexual function and sexual bother were assessed using the UCLA Prostate Cancer Index. The marital interaction scale from the Cancer Rehabilitation Evaluation System Short Form (CARES-SF) was used to assess each patient’s relationship with his sexual partner. SETTING: Urology clinics at a university medical center and the affiliated Veterans Affairs (VA) Medical Center. PARTICIPANTS: Thirty-five (67%) of 54 consecutive university patients presenting for erectile dysfunction and 22 (42%) of 52 VA patients who were awaiting a previously prescribed vacuum erection device participated. MAIN RESULTS: The university respondents scored slightly lower than population normals in social function, role limitations due to emotional problems, and emotional well-being. The VA respondents scored lower than expected in all eight domains. Scores for the VA population were significantly lower than those for the university population in physical function, role limitations due to physical problems, bodily pain, and social function. A significant correlation was seen between marital interaction and sexual function (r = –.33, p = .01) but not between marital interaction and sexual bother (r = –.15, p = .26) in the total sample. Sexual function also correlated significantly with general health perceptions (r = .34, p = .01), role limitations due to physical problems (r = .29, p = .03), and role limitations due to emotional problems (r = .30, p = .03). Sexual bother did not correlate with any of the general HRQOL domains. Affluent men reported better sexual function (p = .03). CONCLUSIONS: The emotional domains of the SF-36 are associated with more profound impairment than are the physical domains in men with erectile dysfunction. Erectile dysfunction and the bother it causes are discrete domains of HRQOL and distinct from each other in these patients. With increased attention to patient-centered medical outcomes, greater emphasis has been placed on such variables as HRQOL. This should be particularly true for a patient-driven symptom, such as erectile dysfunction.

Quality of life assessment in clinical trials : methods and practice

Abstract: Part 1 - Introduction Understanding and using health-related QOL instruments within clinical research studies Part 2 - Primary issues specific to quality of life trials Guidelines for measuring health-related QOL in clinical trials Sample sizes for randomized trials measuring QOL Cross-cultural issues in the use of QOL measures in randomized controlled trials Profile versus utility based measures of outcome for clinical trials Part 3 - Decision theory and preference assessment Introduction to decision theory and utilities Using decision theory in clinical research: applications of QALY Possibilities for summarizing health-related QOL when using a profile instrument Part 4 - Psychometry Questionnaire scaling: models and issues Assessing reliability and validity of measurement in clinical trials Item response theory models Factor analysis Part 5 - Data analysis Methods of analysis for longitudinal studies of health-related QOL Analysis of incomplete QOL data in clinical trials Using the Q-Twist method for treatment comparisons in clinical trials Part 6 - Interpreting and reporting results of QOL clinical trials Clinical interpretation of health-related QOL data Summarizing QOL data using graphical methods Guidelines for reporting results of QOL assessment in clinical trials Index

Diabetic peripheral neuropathy and quality of life.

Abstract: The quality of life (QOL) of 79 people with type 1 and type 2 diabetes and 37 non-diabetic controls was assessed using the Nottingham Health Profile (NHP). The NHP consists of six domains assessing energy, sleep, pain, physical mobility, emotional reactions and social isolation. Symptomatic diabetic neuropathy was present in 41 of the patients. The neuropathy patients had significantly higher scores (impaired QOL) in 5/6 NHP domains than either the other diabetic patients (p < 0.01) or the non-diabetic (p < 0.001) controls. These were: emotional reaction, energy, pain, physical mobility and sleep. The diabetic patients without neuropathy also had significantly impaired QOL for 4/6 NHP domains compared with the non-diabetic control group (p < 0.05) (energy, pain, physical mobility and sleep). This quantification of the detrimental effect on QOL of diabetes, and in particular of chronic symptomatic peripheral diabetic neuropathy, emphasizes the need for further research into effective management of these patients.

Characteristics of patients with asthma within a large HMO: A comparison by age and gender

Abstract: Adequate information about characteristics of asthmatic patients in large health maintenance organizations (HMOs) is still lacking. As part of an ongoing longitudinal study, baseline data were collected on 914 individuals aged 3 to 55 yr with physician-diagnosed asthma within a large HMO, Kaiser Permanente, NW Region. There were no significant differences between men and women in post-bronchodilator FEV1 when expressed as percent (%) predicted yet women with asthma reported more daytime and nocturnal symptoms than men (p = 0.002), and worse quality of life in all but three of 14 subscales in two asthma quality of life instruments. Specifically, women in the 35-55 yr age group uniformly reported worse physical functioning on the SF-36 quality of life scale (71 +/- 23 versus 85 +/- 18; p = 0.001), social functioning (73 +/- 21 versus 77 +/- 20; p = 0.016), and bodily pain (63 +/- 27 versus 72 +/- 24; p < 0.001). Also these women reported use of more health care (p = 0.002) and more medications for asthma than men (p < 0.01). Our data suggest that men and women respond differently to their asthma, and observed gender differences in various measures of asthma such as hospital admissions, quality of life, and use of metered dose inhalers (MDIs), may be related to this difference in response to disease, rather than to real differences in the disease between men and women. Understanding gender related differences in response to a chronic disease such as asthma is important in tailoring an education and management plan to each individual patient.

Quality of life measurement in schizophrenia: reconciling the quest for subjectivity with the question of reliability

Abstract: Background The patients' ability to appraise their quality of life in schizophrenia was studied by examining the reliability and the validity of self-rated quality of life estimates. Methods Sixty-three symptomatically stable patients with schizophrenia (DSM-IV) receiving maintenance treatment were evaluated over a 4-week period. The subjects were asked to appraise their quality of life at weekly intervals on a single item global quality of life measure, as well as the self-administered sickness impact profile. The patients' quality of life was also rated by a clinician using the social performance schedule and the global assessment scale of functioning; and clinical aspects such as the severity of psychotic symptoms, neurocognitive deficits, dose of medications, and side effects were documented with standardized measures. Results The results indicated that the patients' self-reports were highly consistent over the 4 weeks, and the quality of life ratings correlated significantly with the clinician's estimates. The patients' quality of life was predictably influenced by the severity of their symptoms, side effects, cognitive deficits and the dose of their antipsychotic medication, but the reliability of their reports was not materially affected by these factors. Conclusions It is concluded that clinically compliant and stable patients with schizophrenia can evaluate and report their quality of life with a high degree of reliability and concurrent validity, implying that self-report measures are potentially useful tools in clinical trials and outcome studies.

Quality of life 10 years after a very severe traumatic brain injury (TBI): the perspective of the injured and the closest relative

Abstract: This study is a further follow-up of a group of 15 very severely injured TBI patients who have earlier been followed-up 5 years after the injury, and their closest relatives. The aim of this study was to evaluate the factors related to the quality of life of the injured and the strain felt by the relatives. The information was gathered by questionnaires for the injured and the relative and clinical ratings based on the observations of a clinician. The self-reported quality of life of both the injured and their closest relatives was rather high in spite of the various physical, cognitive and emotional/behavioral disturbances. However, the strain felt by many of the relatives was still high 10 years after the injury although it had decreased over the years. The neurobehavioral and emotional disturbances had the most significant effect on the quality of life of the injured and strain felt by the relative. The relationship between the quality of life of the injured and strain felt by the relative was not linear. The implications of the findings for developing different forms of rehabilitation and support systems is discussed.

Development of a disease specific quality of life questionnaire for patients with Graves' ophthalmopathy: the GO-QOL

Abstract: Aim—To develop a reliable and valid disease specific quality of life questionnaire (the GO-QOL) for patients with Graves’ ophthalmopathy (GO), that can be used to describe the health related quality of life and changes in health related quality of life over time as a consequence of disease and treatment. Methods—70 consecutive GO patients (age >18 years) who were referred for the first time to the combined outpatient clinic of the orbital centre and the department of endocrinology completed the 16 questions of the GO-QOL. Additional information on general quality of life and disease characteristics was obtained. Construct validity and internal consistency of the disease specific questionnaire was determined, based on principal component analysis, Cronbach alphas and correlations with MOS-24, three subscales of the SIP, demographic, and clinical measures. Results—The a priori expected subdivision of the questionnaire in two subscales, one measuring the consequences of double vision and decreased visual acuity on visual functioning, and one measuring the psychosocial consequences of a changed appearance, was confirmed in the principal component analysis. Both scales had a good reliability and high face validity. Correlations with other measures supported construct validity. Mean scores (range 0‐100) were 54.7 (SD 22.8) for visual functioning and 60.1 (24.8) for appearance (higher score = better health). Conclusion—The GO-QOL is a promising tool to measure disease specific aspects of quality of life in patients with GO and provides additional information to traditional physiological or biological measures of health status. (Br J Ophthalmol 1998;82:773‐779) Graves’ ophthalmopathy (GO), associated with Graves’ thyroid disease (GTD), is an incapacitating eye disease, causing disfiguring proptosis, pain, redness, and swelling of the eyelids, grittiness of the eyes, diplopia, and sometimes even blindness. 12

Randomized comparison of four tools measuring overall quality of life in patients with advanced cancer.

Abstract: PURPOSEWe report on a clinical trial developed to compare four different instruments that provide overall quality-of-life (QOL) scores, ranging from a simple, one-item instrument to more detailed instruments. Two issues addressed were (1) Will QOL tools suffer from missing data when used in a community-based cooperative group setting?, and (2) Are there additional data generated by a more detailed multiitem instrument over that provided by a single-item global QOL question?MATERIALS AND METHODSA four-arm randomized trial was designed to compare four instruments that provide overall QOL scores in patients with advanced colorectal cancer. Patients and physicians completed the single-item Spitzer Uniscale (UNISCALE) at baseline and monthly. Patients were randomly assigned to complete, in addition, either the 22-item Functional Living Index-Cancer (FLIC), the five-item Spitzer QOL index (QLI), a picture-face scale (PICT), or nothing else.RESULTSA total of 128 patients were randomized. Greater than 90% complet...

Measuring quality of life in children with rhinoconjunctivitis

Abstract: Objective: The objective of this study was to develop, pretest, and validate a questionnaire to measure quality of life in children with seasonal allergic rhinoconjunctivitis (SAR). Methods (development study): Thirty-four children with SAR were enrolled from summer camps, notices in the media, and an allergy clinic (Southern Ontario). After generating a pool of 48 potentially important quality of life items, the children identified the ones that they experienced with their SAR and scored each for bother (1 = a little bothered to 4 = extremely bothered). Items identified most frequently and with the highest bother score were included in the Paediatric Rhinoconjunctivitis Quality of Life Questionnaire (PRQLQ). The PRQLQ was pretested for ease completion and accuracy of understanding. Results (development study): The PRQLQ has 23 items in five domains (nose symptoms, eye symptoms, practical problems, other symptoms, and activities). Responses are given on a seven-point scale, and children are asked to score their experiences during the previous 7 days. Methods (validation study): Seventy-five children with symptomatic SAR were enrolled from notices in the media and a pediatric allergy clinic (Austin, Tex.). A single cohort design was used, with children assessed at 0, 1, and 3 weeks. The PRQLQ was administered to the children by a trained interviewer at 1 and 3 weeks. A conventional nasal symptom daily diary was completed for 1 week before each of these clinic visits. Global ratings were completed at the final visit. Results (validation study): In patients who were stable between clinic visits, the PRQLQ demonstrated good reliability (intraclass correlation coefficient=0.93). The questionnaire was very responsive to change ( p p = 0.005). Correlations between the PRQLQ and diary scores were close to predicted and supported both the cross-sectional and longitudinal validity of the PRQLQ. Conclusions: The PRQLQ measures the quality of life impairments important to children with SAR. Children provide reliable and accurate responses, the measurement properties are strong, and the questionnaire can be used with confidence in clinical trials, clinical practice, and surveys. (J Allergy Clin Immunol 1998;101:163-70.)

Stroke Unit Treatment Improves Long-term Quality of Life A Randomized Controlled Trial

Abstract: Background and Purpose —We have previously shown that treatment of acute stroke patients in the combined acute and rehabilitation stroke unit in our hospital improves survival and functional outcome compared with treatment in general wards. The primary aim of the present trial was to examine whether the treatment in our stroke unit had an effect on different aspects of quality of life (QoL) for stroke patients 5 years after the onset of stroke. Methods —In a randomized controlled trial, 110 patients with symptoms and signs of an acute stroke were allocated to the stroke unit and 110 to general wards. No significant differences existed in baseline characteristics between the two groups. The patients alive after 5 years were assessed by the Nottingham Health Profile (NHP) and the Frenchay Activities Index (FAI), which were the scales used as primary outcome measures for QoL. As secondary outcome measures we used a global score for the NHP and a simple visual analogue scale (VAS). Results —After 5 years, 45 of the patients treated in the stroke unit and 32 of those treated in general wards were alive. All surviving patients were assessed by the FAI. Thirty-seven (82.2%) of the stroke unit patients and 25 (78.1%) of the general wards patients were assessed by the NHP; 38 (84.4%) and 28 (87.5%), respectively, were assessed by the VAS. Patients treated in the stroke unit had a higher score on the FAI ( P =0.0142). Assessment with the NHP showed better results in the stroke unit group for the dimensions of energy ( P =0.0323), physical mobility ( P =0.0415), emotional reactions ( P =0.0290), social isolation ( P =0.0089), and sleep ( P =0.0436), although there was no difference in pain ( P =0.3186). The global NHP score and VAS score also showed significantly better results in the stroke unit group (NHP, P <0.01; VAS, P <0.001). Patients who were independent in activities of daily living had significantly better QoL assessed by these scales than patients who were dependent. Conclusions —Our study shows for the first time that stroke unit care improves different aspects of long-term QoL for stroke patients.

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

Abstract: Quality of life (QOL) is an important outcome measure in caring for terminally ill patients. The Missoula-VITAS Quality of Life index (MVQOLI) has been developed to provide a measure of quality of life that is meaningful to both clinicians and patients. Unique features of the instrument include its focus on the terminal phase of life, the item structure and a scoring system that allows the weighting of each dimension of QOL by the respondent, and the subjective wording of the items that allows respondents to interpret the measured elements according to their own experience. The validity and reliability of the patient-reported survey instrument were tested by administering the 25-item questionnaire to 257 patients in 10 community-based hospices. Participants were incurably ill with predicted survival of six months or less. Exclusion criteria included inability to communicate, dementia, or psychological symptoms that might be intensified by completing the index. Reliability and validity of the new index were examined using standard statistical and psychometrical analyses. The MVQOLI demonstrated internal consistency (Cronbach's alpha = 0.77). MVQOLI total scores were correlated with scores on the Multidimensional Quality of Life Scale--Cancer 2 and with patient-reported global QOL ratings. MVQOLI scores did not correlate with observer-rated functional status scores indicating divergent validity. The MVQOLI could be completed by patients of varied educational level, age, functional status, and length of time with a terminal illness. The instrument is designed to contribute to the task of planning care by evaluating patient-identified sources of distress, strength and satisfaction, including issues of life closure. This information contributes to crafting highly specific interventions. Further studies are necessary to determine the usefulness of the instrument in measuring outcomes of end-of-life care in nonhospice settings, and for racial and diagnostic groups under-represented in this sample.