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Restorative sleep is an important component of quality of life. Disturbances in sleep after burn injury were reported but all based on uncontrolled or nonstandardized data. The occurrence and the effect of long-term sleep problems in young adult burn survivors have not been well defined. This 5-year (2003-2008) prospective multicenter longitudinal study included adults with burn injuries ages 19 to 30 years who completed the Young Adult Burn Outcome Questionnaire (YABOQ) up to 36 months after injury. The items measured 15 patient-reported outcomes including physical, psychological, and social statuses and symptoms such as itch and pain. Scores of these 15 YABOQ outcome domains were standardized to a mean of 50 and a SD of 10 based on an age-matched nonburned reference group of young adults. Sleep quality was assessed using the item 'How satisfied are you now with your sleep,' rated by a 5-point Likert scale. Patients responding with very and somewhat dissatisfied were classified as having sleep dissatisfaction and the remaining as less or not dissatisfied. The associations between sleep dissatisfaction (yes/no) and YABOQ outcome domains were analyzed longitudinally using mixed-effect generalized linear models, adjusted for %TBSA burned, age, gender, and race. Generalized estimating equations were used to take into account correlated error resulting from repeated surveys on each patient over time. One hundred and fifty-two burn survivors participated in the YABOQ survey at baseline and during the follow-up who had at least one survey with a response to the sleep item. Among them, sleep dissatisfaction was twice as prevalent (76/152, 50%) when compared with the nonburned reference group (29/112, 26%). The likelihood of a burn survivor being dissatisfied with sleep was reduced over time after the burn injury. Sleep dissatisfaction following burns was significantly associated, in a dose-dependent manner, with increasing burn size (P = .001). Better sleep was associated with better outcomes in all domains (P < .05) except Fine Motor Function, and this association was significantly more apparent in the longer term compared with the shorter term with the same domains (P < .05). Dissatisfaction with sleep is highly prevalent following burn injuries in young adults. Lower satisfaction with sleep is associated with poorer scores in nearly all quality of life measures. Satisfaction with sleep should be addressed during the long-term clinical follow-up of young adults with burn injuries. Further research should be undertaken to understand the components of sleep quality that are important to burn survivors and which ones might be modified and tested in future intervention studies.

Background: The Long-Form Psychosocial Questionnaire (LFPQ) includes full versions of the Child Stress Reaction Checklist, the Family Environment Scale, and the Parenting Stress Index. Condensed versions of these measures were used to create a Short-Form Psychosocial Questionnaire (SFPQ) that could be used as an indicator of child well-being and specific areas of child, parent, and family functioning in children aged 0 years to 18 years with burn injury., Methods: Parents of 830 children aged 0 years to 18 years with acute burn injury from the Shriners Hospitals for Children Multi-Center Benchmarking Study completed the LFPQ at baseline and follow-up visits up to 48 months at four major burn centers. The internal consistency reliability and variability of the LFPQ explained by the SFPQ for each of the measures were calculated. The construct validity of the SFPQ measures was determined by factor analysis. The magnitude of the change for the SFPQ measures during 48 months of follow-up was examined., Results: The internal consistency reliability of the short-form measures ranged from 0.62 to 0.90. The variability of the long-form measures explained by the short-form measures was 61% for the Child Stress Reaction Checklist (average of six long-form scales), 60% for the Family Environment Scale (conflict), and 90% for the Parenting Stress Index (average of 13 scales). Factor analysis supported the construct validity of the model for the short-form measures. The magnitude of change for the short-form measures showed clinical improvement for 48 months., Conclusion: The SFPQ is both a reliable and valid assessment for evaluating the psychosocial functioning of children following burn injuries.

Objective: To develop the Self-Administered Comorbidity Questionnaire (SCQ) and assess its psychometric properties, including the predictive validity of the instrument, as reflected by its association with health status and health care utilization after 1 year., Methods: A cross-sectional comparison of the SCQ with a standard, chart abstraction-based measure (Charlson Index) was conducted on 170 inpatients from medical and surgical care units. The association of the SCQ with the chart-based comorbidity instrument and health status (short form 36) was evaluated cross sectionally. The association between these measures and health status and resource utilization was assessed after 1 year., Results: The Spearman correlation coefficient for the association between the SCQ and the Charlson Index was 0.32. After restricting each measure to include only comparable items, the correlation between measures was stronger (Spearman r = 0.55). The SCQ had modest associations with measures of resource utilization during the index admission, and with health status and resource utilization after 1 year., Conclusion: The SCQ has modest correlations with a widely used medical record-based comorbidity instrument, and with subsequent health status and utilization. This new measure represents an efficient method to assess comorbid conditions in clinical and health services research. It will be particularly useful in settings where medical records are unavailable.

The goal of this work was to develop an economical way of tracking disease activity for large groups of systemic lupus erythematosus (SLE) patients in clinical studies. A Systemic Lupus Activity Questionnaire (SLAQ) was developed to screen for possible disease activity using items from the Systemic Lupus Activity Measure (SLAM) and tested for its measurement properties. The SLAQ was completed by 93 SLE patients just prior to a scheduled visit. At the visit, a rheumatologist, blinded to SLAQ results, examined the subject and completed a SLAM. Associations among SLAQ, and SLAM (omitting laboratory items) and between individual items from each instrument were assessed with Pearson correlations. Correlations between pairs of instruments were compared using Student's t-tests. The mean score across all 24 SLAQ items was 11.5 (range 0-33); mean SLAM without labs was 3.0 (range 0-13). The SLAQ had a moderately high correlation with SLAM-nolab (r = 0.62, P < 0.0001). Correlations between patient-clinician matched pairs of items ranged from r = 0.06 to 0.71. Positive predictive values for the SLAQ ranged from 56 to 89% for detecting clinically significant disease activity. In studies of SLE, symptoms suggesting disease can be screened by self-report using the SLAQ and then verified by further evaluation.

The 12-member American Burn Association/Shriners Hospitals for Children Outcomes Task Force was charged with developing a health outcomes questionnaire for use in children 5 years of age and younger that was clinically based and valid. A 55-item form was tested using a cross-sectional design on the basis of a range of 184 infants and children between 0 and 5 years of age at 8 burn centers, nationally. A total of 131 subjects completed a follow-up health outcomes questionnaire 6 months after the baseline assessment. A comparison group of 285 normal nonburn children was also obtained. Internal consistency reliability of the scales ranged from 0.74 to 0.94. Tests of clinical validity were significant in the hypothesized direction for the majority of scales for length of hospital stay, duration since the burn, percent of body surface area burned, overall clinician assessment of severity of burn injury, and number of comorbidities. The criterion validity of the instrument was supported using the Child Developmental Inventories for Burn Children in early childhood and preschool stages of development comparing normal vs abnormal children. The instrument was sensitive to changes over time following a clinical course observed by physicians in practice. The Health Outcomes Burn Questionnaire for Infants and Children 5 years of age and younger is a clinically based reliable and valid assessment tool that is sensitive to change over time for assessing burn outcomes in this age group.

Background: The measurement of the patient's experience with a condition or an illness is an important and quantifiable outcome and an example of action research. By making these concerns paramount, the goals and processes of health care can be redirected from anatomical and physiologic restoration to patient-oriented outcomes. At the same time, research can illuminate the complex mechanisms responsible., Methods: Critical, analytic synthesis and review of the research evaluating the ability of self-administered questionnaires to capture clinically meaningful changes., Results: Responsiveness is differentiated from sensitivity, and statistical methods for evaluating sensitivity of instruments are referenced. Techniques for evaluating whether differences in instrument sensitivity could have occurred by chance are presented, and methods for assessing a clinically meaningful change are discussed., Conclusion: Responsiveness is the key psychometric property of an instrument if it is to be incorporated into daily practice. Improving responsiveness is a major research priority.

Objective: New scales for the clinical assessment of patients with systemic lupus erythematosus (SLE) are valid and reliable, and quantitate disease activity. We assessed the responsiveness to change of 2 widely used standardized multi-item lupus activity measures, the revised Systemic Lupus Activity Measure (SLAM-R) and the Systemic Lupus Erythematosus Disease Activity Index (SLEDAI), and their ability to detect clinically relevant changes., Methods: Ninety-six (96) patients with definite SLE participated in this study. The group mean age was 45.0 (13.7) years, 91% were female, and the mean disease duration was 14.9 (7.5) years. Sociodemographic information, lupus activity (SLAM-R, SLEDAI), and damage were recorded at baseline. At each of the 5 monthly followup visits, the activity measures were repeated and a transition scale asked the physician if their patient's lupus activity had changed. Five different methods were used to compare the responsiveness of the activity measures studied: 1. the effect size; 2. the standardized response mean; 3. the control standardized response mean; 4. the area under the curve of a receiver operating characteristic (ROC) curve; and 5. a new multiple response modeling approach., Results: Both SLAM-R and SLEDAI are responsive. SLAM-R is consistently, although moderately, more responsive than SLEDAI. All 5 methods of evaluating responsiveness yielded a consistent ranking of disease activity measures., Conclusion: SLAM-R and SLEDAI are responsive measures of lupus activity. SLAM-R appears to be more responsive than SLEDAI.

To develop a standardized, practical, self-administered questionnaire to monitor pediatric patients with burns and to evaluate the effectiveness of comprehensive pediatric burn management treatments, a group of experts generated a set of items to measure relevant burn outcomes. Children between the ages of 5 and 18 years were assessed in a cross-sectional study. Both parent and adolescent responses were obtained from children 11 to 18 years old. The internal reliability of final scales ranged from 0.82 to 0.93 among parents and from 0.75 to 0.92 among adolescents. Mean differences between parent and adolescent were small; the greatest difference occurred in the appearance subscale. Parental scales showed evidence of validity and potential for sensitivity to change. In an effort to support the construct validity of the new scales, they were compared with the Child Health Questionnaire and related to each other in clinically sensible ways. These burn outcomes scales reliably and validly assess function in patients with burns, and the scales have been developed in such a way that they are likely to be sensitive to change over time.

The goal of orthopaedic interventions is to improve the functional health of patients, particularly physical function. The American Academy of Orthopaedic Surgeons and the Pediatric Orthopaedic Society of North America (POSNA) commissioned a work group to construct functional health outcomes scales for children and adolescents, focusing on musculoskeletal health. The work group developed scales assessing upper extremity function, transfers and mobility, physical function and sports, comfort (pain free), happiness and satisfaction, and expectations for treatment. Parent and adolescent self-report forms were developed and tested on 470 subjects aged 2-18 years. The POSNA scales demonstrated good reliability, construct validity, sensitivity to change over a 9-month period, and ability to outperform a standard instrument, the Child Health Questionnaire physical functioning scale. They were useful for a wide variety of ages and diagnoses. They appear to be ideally suited for orthopaedic surgeons to assess the functional health and efficacy of treatment of their patients at baseline and follow-up.

Study Design: The measurement properties and validity of a newly developed patient questionnaire for the assessment of patients with lumbar spinal stenosis was tested in an ongoing prospective multicenter observational study of patients undergoing decompressive surgery in three teaching hospitals., Objective: The goal of the study was to develop a short, self-administered questionnaire on symptom severity, physical functional status, and patient satisfaction., Summary of Background Data: The measure is intended to complement existing generic measures of spinal-related disability and health status. The questionnaire includes three scales with seven questions on symptom severity, five on physical function, and six on satisfaction., Methods: The internal consistency of the scales was assessed with Cronbach's coefficient alpha on cross-sectional data from 193 patients before surgery. The test-retest reliability was assessed on data from a random sample of 23 patients using Spearman's rank correlation coefficient. The responsiveness was assessed on 130 patients with 6-month follow-up data using the standardized response mean., Results: The test-retest reliability of the scales ranged from 0.82 to 0.96, the internal consistency from 0.64 to 0.92, and the responsiveness from 0.96 to 1.07. The direction, statistical significance, and strength of hypothesized relationships with external criteria were as expected., Conclusions: This short self-administered spinal stenosis measure is reproducible, internally consistent, valid, and highly responsive. It can be used to complement generic instruments in outcome assessment of patients with lumbar spinal stenosis.

Strategies to improve responsiveness of quantitative questionnaires and methods for evaluating responsiveness are reviewed. Current methods of evaluating responsiveness are not standardized and are themselves unevaluated. A conceptual model of assessing responsiveness is proposed.

Responsiveness, the ability to detect meaningful clinical change, is a critical attribute of instruments used to evaluate outcomes of treatments. The authors hypothesized that self-administered symptom severity and functional status questionnaires are more responsive to clinical improvement after carpal tunnel release than traditional physical examination measures of strength and sensibility. Data were obtained from a randomized clinical trial of endoscopic versus open carpal tunnel release conducted in four university medical centers. Patients were evaluated before surgery and 3 months after surgery. Seventy-four patients indicating that they were more than 80% satisfied with the results of surgery were assumed to have clinically meaningful improvement and were the focus of the analysis. Evaluations included questionnaires assessing symptom severity, functional status, and activities of daily living as well as measurement of grip, pinch, and abductor pollicus brevis strength, and 2-point discrimination and Semmes-Weinstein pressure sensibility. Responsiveness was calculated with the standardized response mean (mean change/standard deviation of change) as well as the effect size (mean change/standard deviation of baseline values). The symptom severity scale was four times as responsive, and the functional status and activities of daily living scales were twice as responsive, as the measures of strength and sensibility. Self-administered symptom severity and functional status scales are much more responsive to clinical improvement than measures of neuromuscular impairment and should severe as primary outcomes in clinical studies of therapy for carpal tunnel syndrome.

Short measures of health status are used increasingly in health services research, yet their sensitivities to clinical change have not been compared with longer, established instruments. In this study, 5 health status measures were administered preoperatively and 3 months postoperatively to 54 patients undergoing total hip arthroplasty. These instruments included the Sickness Impact Profile (SIP)--an established, long measure--and 4 short forms: the SF-36, Functional Status Questionnaire, shortened Arthritis Impact Measurement Scales, and Modified Health Assessment Questionnaire. Scores for physical, psychological, and global dimensions were constructed by aggregating subscales. Sensitivity to change, or responsiveness, was expressed with the standardized response mean (SRM), calculated as the mean change in score divided by the standard deviation of the change in score. The sampling distribution of the SRM was estimated with a jackknife procedure. Preoperative scores were moderately to highly correlated across instruments. The physical and global dimension SRMs of the brief health status measures ranged from 0.85 to 1.27 and were as large as or larger than the corresponding SIP SRMs. The SIP had the highest SRM on the psychological dimension. None of the instruments was significantly more sensitive than the others at the critical value (P = 0.005) adjusted for multiple comparisons. The brief health status measures were equally or more responsive than the SIP after total hip arthroplasty in the physical and global dimensions. Much larger samples are required to demonstrate statistically significant differences in SRMs among instruments.