42391433
Retrospectively patient-reported pre-event health status showed strong association and agreement with contemporaneous reports.
OBJECTIVE
The unpredictability of the occurrence of illnesses and injuries leading to most emergency admissions to hospital makes it impossible prospectively to collect preadmission patient-reported outcome measures (PROMs). Our aims were to review the evidence for using retrospective PROMs to determine pre-event health status and the validity of using general population norms instead of retrospective PROMs.


STUDY DESIGN AND SETTING
Searches of Medline, PsycINFO, Embase, Global Health, and Health Management information. Six studies met the inclusion criteria for the first aim, and 11 studies addressed the second aim. Narrative syntheses were conducted.


RESULTS
Strong associations were found between retrospective and contemporary PROMs in 21 of 30 comparisons (correlation coefficients over 0.68) and 20 of 24 showed strong agreement for continuous measures (intraclass correlations over 0.75). Categorical measures revealed only fair to moderate levels of agreement (kappa 0.3-0.6). Associations were stronger for indices than for individual items and for shorter time intervals. The direction of differences was inconsistent. Retrospective PROMs reported by elderly patients were similar to the general population but younger adults had been healthier.


CONCLUSION
Retrospective collection offers a means of assessing PROMs in unexpected emergency admissions. However, further research is needed to establish the best policy for their use.
142642100
Injury Control: A Guide to Research and Program Evaluation
1. An Overview of Injury Research Frederick P. Rivara 2. Classifying and Counting Injury Lois A. Fingerhut and Elizabeth McLoughlin 3. Measurement of Injury Severity and Co-morbidity Grant O'Keefe and Gregory J. Jurkovich 4. Data Linkages and Using Administrative and Secondary Databases Beth A. Mueller 5. Rates, Rate Denominators and Rate Comparisons Peter Cummings, Robyn Norton and Thomas D. Koepsell 6. Data Collection Methods Carol W. Runyan and J. Michael Bowling 7. Selecting a Study Design for Injury Research Thomas D. Koepsell 8. Qualitative Methods in Injury Research David C. Grossman and Lorna Rhodes 9. Randomised Trials Thomas D. Koepsell 10. Cohort Studies in Injury Research Jess F. Kraus 11. Case-Control Studies in Injury Research Peter Cummings, Thomas D. Koepsell and Ian Roberts 12. Ecologic Studies Ralph Hingson, Jonathan Howland, Thomas D. Koepsell and Peter Cummings 13. Case Studies and Trauma Registries Charles Mock 14. Systematic Reviews of Injury Studies Frances Bunn, Carolyn G. DiGuiseppe and Ian Roberts 15. Evaluating an Injury Intervention or Program Robert S. Thompson and Jeffrey J. Sacks 16. The Development of Clinical Decision Rules for Injury Care Ian G. Stiell 17. Trauma Performance Improvement Ronald V. Maier and Michael Rhodes 18. Measuring Disability and Quality of Life Post-injury Ellen J. MacKenzie 19. Economic Evaluation of Injury Control John D. Graham and Maria Segui-Gomez 20. Ethical Issues Helen McGough and Marsha E. Wolf Index.
3099706
Optimal recall periods for patient-reported outcomes: challenges and potential solutions.
OBJECTIVES
As the role and importance of patient-reported outcomes (PROs) increase, the validity and reliability of PRO measures come under greater scientific and regulatory scrutiny. One key issue is selecting the 'most appropriate' recall period for capturing PROs in clinical trials. This paper draws on survey research, health-specific literature, and results from clinical trials to summarize factors that can influence recall and provide guidance on selecting an optimal recall period.


METHODS
We conducted a systematic review of six databases and additional literature drawn from bibliographies of the selected articles.


RESULTS
Six major factors can influence recall; these can be classified into two broad areas: characteristics of the recalled phenomenon (recency, attributes, complexity) and context or meaning of the recalled phenomenon (salience, patient experience, mood). Results of different recall periods for three classes of PROs are presented: health behaviors, symptoms, and health-related quality of life. We present findings on the effect of alternative recall periods for three commonly used PROs. Finally, we propose a heuristic model to link the concept under investigation with an optimal recall period.


CONCLUSIONS
No single recall period is best for all measures or all phenomena. The recall period must correspond to the characteristics of the phenomenon of interest and the purpose of the assessment. Recall period is an issue of internal validity. An incorrect recall period introduces measurement error that may reduce the chances of detecting a treatment effect. Researchers should consider recall period as seriously as they do other measurement properties.
21055497
Patient recall and recall bias of health state and health status
The reliability of recall patient reported outcomes, such as health-related quality of life, satisfaction and symptoms, varies substantially. The objectives of this special report are to identify key issues to consider in study design and provide suggestions for minimizing bias in studies including patient reported outcomes. A MEDLINE search identified several areas in which patient recall is subject to bias. Concordance between patient recall and baseline assessments (e.g., prior to an event or medical intervention) for these patient reported outcomes varies depending on the event being recalled, time since the event, and patient clinical and demographic characteristics. Symptom recall tends to be better than recall of health-related quality of life or pain intensity. Specific questionnaire techniques may help minimize the impact of recall bias. Further research is required to determine what factors or patient characteristics predict improved recall and what techniques minimize recall bias.
34603142
The health-related quality of life of adults with Gaucher's disease receiving enzyme replacement therapy: results from a retrospective study
Few studies have reported on the effect of Gaucher's disease on patient-reported, health-related quality of life (HRQoL) and we do not know how the HRQoL burden of Gaucher's disease compares to that of other chronic conditions, what areas of HRQoL are most affected or how the course of change in HRQoL compares with that observed for other conditions or for the general adult population. The purpose of this study was to estimate (1) the HRQoL burden associated with Gaucher's disease managed by enzyme replacement therapy (ERT), (2) recalled changes in HRQoL since ERT initiation and (3) risk factors predictive of HRQoL outcomes. We sampled 212 patients with Gaucher's disease recruited from 146 physicians prescribing ERT in the US. The patients were at least 14 years of age and had been on ERT from 1 to 51 months. The mean (SD) age of the participants was 45 (17) years. Forty-nine percent had had a prior splenectomy and 26% had had a joint replacement. We administered the SF-36 Health Survey (SF-36) and three questions about changes in physical, mental and general HRQoL since starting ERT. The patients with Gaucher's disease scored significantly worse than the age- and gender-adjusted US norms on five of the eight SF-36 subscales (p<0.05). Age (p<0.0001) and joint replacement (p<0.001) were negatively associated with physical health. The presence of an intact spleen (p<0.01) and a longer duration of ERT (p<0.01) were associated with better mental health. When asked about changes in HRQoL since starting ERT, at least half of the patients reported fewer limitations in physical activities (53%), better general health perceptions (77%) and less negative emotions (49%) at the time of the interview. Patients who had been receiving ERT for approximately 4 years recalled four and five times more improvement in general HRQoL in comparison with recalled changes over a 4 year period among adults in the general population (p<0.001) and a congestive heart failure population (p<0.01), respectively. Odds ratios (ORs) revealed that female patients were more likely to report improvements in general HRQoL than males (OR=4.50 and 95% CI=2.19–9.25) and 45 year old patients were less likely to report improvements than 35 year olds (OR=0.76 and 95% CI=0.62–0.94). Relative to patients who had been receiving ERT for 1 year, those who had been receiving ERT for 2 and 4 years were 1.40 (95% CI=1.06–1.84) and 2.75 (95% CI=1.20–6.27) times more likely to report improvements in general HRQoL, respectively. In summary, patients with Gaucher's disease on ERT reported an improvement in HRQoL that was greater than that reported by patients with other chronic diseases. However, Gaucher's patients treated for up to 51 months scored below equivalent adults in the general population. The risk factors, including age and history of splenectomy and joint replacement, warrant further study. Standardized HRQoL measures are likely to prove useful in understanding better the outcomes from the Gaucher's patient's perspective.
20959396
The development of a quality appraisal tool for studies of diagnostic reliability (QAREL).
BACKGROUND AND OBJECTIVE
In systematic reviews of the reliability of diagnostic tests, no quality assessment tool has been used consistently. The aim of this study was to develop a specific quality appraisal tool for studies of diagnostic reliability.


METHODS
Key principles for the quality of studies of diagnostic reliability were identified with reference to epidemiologic principles, existing quality appraisal checklists, and the Standards for Reporting of Diagnostic Accuracy (STARD) and Quality Assessment of Diagnostic Accuracy Studies (QUADAS) resources. Specific items that encompassed each of the principles were developed. Experts in diagnostic research provided feedback on the items that were to form the appraisal tool. This process was iterative and continued until consensus among experts was reached.


RESULTS
The Quality Appraisal of Reliability Studies (QAREL) checklist includes 11 items that explore seven principles. Items cover the spectrum of subjects, spectrum of examiners, examiner blinding, order effects of examination, suitability of the time interval among repeated measurements, appropriate test application and interpretation, and appropriate statistical analysis.


CONCLUSIONS
QAREL has been developed as a specific quality appraisal tool for studies of diagnostic reliability. The reliability of this tool in different contexts needs to be evaluated.
42710686
Recollected versus contemporary patient reports of pre-operative symptoms in men undergoing transurethral prostatic resection for benign disease.
The objective of the study was to investigate the reliability of patients' recollected pre-intervention symptom status and the impact of those symptoms compared with contemporary pre-operative reports, and to test the stability of recollected views. In design (A) a self-completed symptom questionnaire was administered before (contemporary) and 3 months after (recollected) surgery. In design (B) a self-completed symptom questionnaire on recollected pre-operative symptoms was administered 12 and 14 weeks after surgery. Setting (A) comprised the twin consultant urological unit in the Chesterfield and North Derbyshire Royal Hospital NHS Trust, and setting (B) a sample from the National Prostatectomy Audit of 5281 patients. The subjects were 77 consecutive patients scheduled for transurethral resection of the prostate (TURP), and 170 consecutive respondents undergoing TURP. The main outcome measures were the difference in group mean scores for The American Urological Association (AUA) Symptom Index, Impact Index (a score of symptom impact), and 14 constituent questions; association assessed using Pearson's correlation coefficient; agreement assessed using weighted Kappa statistics. Complete paired data sets were available for 58 (75%) men for the Symptom Index, and for 61 (79%) men for the Impact Index. Pre-operative mean Symptom Index scores for contemporary and recollected were similar, as were mean scores for the Impact Index. However, only poor to fair levels of association and agreement were obtained for the Symptom Index (r = 0.6, kappa (w) = 0.3) and Impact Index (r = 0.6, kappa (w) = 0.3). Results for the constituent questions were similar.(ABSTRACT TRUNCATED AT 250 WORDS)
45605727
Pitfalls of Using Patient Recall to Derive Preoperative Status in Outcome Studies of Total Knee Arthroplasty
Background: It is essential to adjust for the level of preoperative pain and functional status when measuring the outcome of total knee arthroplasty. Some study designs rely on postoperative patient recall to derive preoperative status. In this study, we compared prospectively collected preoperative data with data derived from patient recall of preoperative status three months after total knee arthroplasty. Methods: Patients were recruited as part of a prospective observational study of the outcome of primary total knee arthroplasty for osteoarthritis at four centers in the United States, six centers in the United Kingdom, and two centers in Australia. Independent research assistants recruited patients and collected data with use of a uniform documentation system preoperatively and three months postoperatively. Preoperative data included the findings of a clinical history and physical examination, demographic information, socioeconomic status, and scores from two health-status instruments: the Western Ontario and McMaster University Osteoarthritis Index (WOMAC) and the Medical Outcomes Study Short Form‐36 Health Survey (SF‐36). Postoperative data included the WOMAC and SF‐36 scores and patient recall of preoperative status on selected items from these health-status measures. Results: A total of 862 patients were recruited, and recall data were available for 770 patients (89%). The mean age was seventy years (range, thirty‐eight to ninety years), and 59% of the patients were women. Comparisons of prospective and recall data on individual pain and function items showed poor-to-fair agreement (weighted kappa, 0.20 to 0.41). Patients recalled significantly more pain than they had reported preoperatively (p < 0.001), but there were random recollection errors for the function items. There was only moderate correlation between the prospective and recalled summary scores for pain (Spearman r = 0.53) and function (Spearman r = 0.48). In addition, 61% of the recalled pain scores and 50% of the recalled function scores differed from the prospective scores by more than 10 points (10% of the total range). Conclusions: Patients’ recall of preoperative pain and functional status three months after total knee arthroplasty demonstrated only moderate agreement with what the patients had reported prospectively. Researchers who use recall data to derive preoperative status must recognize these limitations when drawing conclusions about the effectiveness of total knee arthroplasty.
8801097
Patients undergoing knee surgery provided accurate ratings of preoperative quality of life and function 2 weeks after surgery.
OBJECTIVE
To evaluate patients' ability to recall their preoperative self-reported quality of life, function, and general health 2 weeks postoperatively.


STUDY DESIGN AND SETTING
We randomized consecutive patients undergoing arthroscopic knee surgery to group I (assessments at 4 weeks preoperatively, on the day of surgery, and 2 weeks and 12 months postoperatively) or group II (assessments at 2 weeks and 12 months postoperatively). At each visit patients completed disease-specific, knee-specific, and generic health rating scales. At a median of 2 weeks postoperative (range, 0.6 to 14 weeks), patients completed questionnaires according to their recollection of their health 2 weeks before surgery.


RESULTS
Agreement between actual and recalled data was excellent for disease-specific (ICC(WOMET)=0.88 (95% CI 0.82-0.91), ICC(ACL-QOL)=0.86 (95% CI 0.75-0.91)), knee-specific (ICC(IKDC)=0.92 (95% CI 0.90-0.94), ICC(KOOS)=0.93 (95% CI 0.91 to 0.95), and general physical health (ICC(SF-36(PCS))=0.81 (95% CI 0.75-0.86)) instruments. Agreement for general mental health was moderate (ICC(SF-36(MCS))=0.67 (95% CI 0.58-0.75). Greater error associated with recalled ratings contributed to small increases in sample size requirements or small decreases in power to detect differences between groups.


CONCLUSION
Patients recalled their preoperative quality of life, function, and general health at 2 weeks postoperative with sufficiently high accuracy to warrant substituting prospectively collected baseline data with recalled ratings.
9584801
A comparison between patient recall and concurrent measurement of preoperative quality of life outcome in total hip arthroplasty.
The objective is to evaluate the reliability of patients' recall of preoperative pain and function during the immediate postoperation period after total hip arthroplasty. A prospective cohort of 104 patients completed a survey about their quality of life before operation, and recalled preoperative status at 3 days, 6 weeks, and 12 weeks after operation. Quality of life was measured by the Western Ontario and McMaster University Osteoarthritis Index, the Oxford-12 hip score, and the 12-item Short-Form score. The intraclass correlation coefficient and Spearman correlation coefficient were used to compare preoperative quality of life scores to the scores recalled. The reliability of recall remained high up to 3 months postoperation. Patients are able to accurately recall their preoperative function for up to 3 months after total hip arthroplasty.
998691
Determining the utility of recalled lower urinary tract symptoms.
OBJECTIVES
To assess the utility of recalled American Urological Association Symptom Index (AUA-SI) scores 6 months after an initial outpatient clinic visit. The AUA-SI is a validated questionnaire used to assess a patient's lower urinary tract symptoms (LUTS) over a 4-week period. However, patient recall of their LUTS at greater time points is currently unknown.


METHODS
Between May 2007 and August 2008, 98 patients completed the AUA-SI questionnaire at their initial visit ("Past"). At 6-month follow-up, patients recalled their AUA-SI and quality of life (QoL) scores ("Recall"). As a reference, patients also reported their current symptom scores ("Present"). Descriptive statistics, correlations, regression models, and kappa statistics were performed to assess the associations between the "Past" and "Recall" symptom scores as either categorical (mild, moderate, severe) or continuous (0-35 points) variables. Similar analyses were performed for QoL scores.


RESULTS
Analyses indicated significant correlations between the "Recall" and "Past" AUA-SI and QoL scores. Although 70% of patients remained in the same categorical groupings, 62% of patients had clinically significant differences (>or= 3 points) between "Recall" and "Past" scores. Approximately, 80% of patients recalled their QoL score accurately (<or= 1 point).


CONCLUSIONS
In an outpatient setting, only approximately one-third of patients can accurately recall AUA-SI scores as a continuous variable from 6 months prior. However, when used as a categorical variable, "Recall" scores may provide some insight into a patient's "Past" urinary symptoms. Future validation in other populations is required.
8813742
Baseline quality of life before intensive care: A comparison of patient versus proxy responses
Objective:To compare acute lung injury patients' self-reported, retrospective baseline quality of life before their intensive care hospitalization with population norms and retrospective proxy estimates. Design:Prospective cohort study using the Short Form 36 quality-of-life survey. Setting:Thirteen intensive care units at four teaching hospitals in Baltimore, Maryland. Patients:One hundred thirty-six acute lung injury survivors and their designated proxies. Interventions:Both patients and proxies were asked to estimate patient baseline quality of life before hospital admission using the Short Form 36 survey. Measurements and Main Results:Compared with population norms, quality-of-life scores were lower in acute lung injury patients across all eight domains, but the difference was significantly greater than the minimum clinically important difference in only two of eight domains (Physical Role and General Health). The mean paired difference between patient and proxy responses revealed no clinically important difference. However, &kgr; statistics demonstrated only fair to moderate agreement for all domains. Bland-Altman analysis revealed that, for all domains, proxies tended to overestimate quality of life when patient scores were low and underestimate the quality of life when patient scores were high. Conclusion:Retrospective assessment of quality of life before hospitalization revealed that acute lung injury patients' scores were consistently lower than population norms, but the magnitude of this difference may not be clinically important. Proxy assessments had only fair to moderate agreement with patient assessments. Across all eight Short Form 36 quality-of-life domains, proxy responses represented an attenuation of patient quality-of-life estimates.
22089634
Femoral neck fractures in the elderly: Functional outcome and quality of life according to EuroQol
The main purpose of this prospective study was to investigate the functional outcome and health-related quality of life according to EuroQol (EQ-5D) after a femoral neck fracture treated with internal fixation in relatively healthy elderly patients. We also aimed to validate the use of the EQ-5D in routine clinical follow-ups of this group of patients. The inclusion criteria were more than 65 years of age, absence of severe cognitive dysfunction, living independently, and unhindered walking ability preoperatively. The mean follow-up period was 17 months. The rated prefracture EQ-5Dindex scores showed good correspondence with the scores of an age-matched Swedish reference population. The EQ-5Dindex scores decreased from 0.78 before the fracture (based on recall) to 0.59 at 4 months and 0.51 at 17 months after surgery. The decrease was significantly larger among patients with fracture healing complications. There was a good correlation between the EQ-5Dindex scores and other outcome measures such as pain, mobility, independence in ADL and independent living status. The questionnaire response rate (EQ-5D) was 89–100% on different follow-up occasions. The EQ-5D appears to be an easy-to-use instrument even for elderly patients with femoral neck fractures. Changes in the quality of life may be useful to identify patients who might benefit from reoperation, i.e. arthroplasty. The EQ-5D also appears to be a relevant clinical end-point in outcome studies.
23586190
A population-based cohort study of longer-term changes in health of car drivers involved in serious crashes.
STUDY OBJECTIVE
Evidence about the burden of disability after motor vehicle crashes has relied primarily on trauma center-based studies. We examine the impact of serious crashes on the longer-term health of car drivers, independent of natural variation, in a population-based study in Auckland, New Zealand.


METHODS
The study population comprised 218 car drivers surviving nonfatal crashes in Auckland, in which at least 1 occupant in the vehicle was admitted to a hospital, and a representative sample of 254 car drivers in the region, recruited from roadside surveys. All participants were interviewed at recruitment (subjects reported their precrash health) and 5 and 18 months later. The drivers' changes in health were obtained with a global health transition indicator and the Short Form-36, with analyses adjusting for potential confounders.


RESULTS
Compared with 7% of drivers in the comparison group, 43% of crash drivers admitted to the hospital (adjusted odds ratio 10.4; 95% confidence interval 5.5 to 19.6) and 20% of those not admitted (odds ratio 3.3; 95% confidence interval 1.4 to 8.3) reported that their overall health at 18-month follow-up was worse than at baseline (precrash). Among the drivers reporting worsened health, prospectively ascertained Short Form-36 scores revealed greater reductions in physical health in those admitted after the crash, but these scores improved from 5 to 18 months. In contrast, mental and general health scores worsened from 5 to 18 months in admitted and nonadmitted crash drivers.


CONCLUSION
A substantial proportion of drivers surviving serious crashes experience reductions in longer-term health, a burden likely to be underappreciated among those not admitted to a hospital. Emergency departments could serve as useful settings in which to develop and validate clinical decision rules that can help target services for crash survivors at increased risk of adverse outcomes.
72744857
Traditional injury scoring underestimates the relative consequences of orthopedic injury.
Objective: To demonstrate that patients with multiple injuries who have orthopedic injuries (ORTHO) face greater challenges regarding functional outcome than those without, to identify domains of postinjury dysfunction, and to illustrate the increasing discordance of functional recovery over time for ORTHO patients in relation to nonORTHO patients. Methods: A convenience sample of adult blunt force trauma patients admitted to a Level I trauma center was evaluated at admission, and at 6 and 12 months after injury. Data were collected from the trauma registry (Trauma One), chart review, and interviews. Mailed surveys were completed 6 and 12 months after injury. The Short Form 36 (SF36) general health survey and the Sickness Impact Profile work scale (SIPw) were administered at both time points. Data are presented as mean ± SEM or percent (%). To compare means, t tests were conducted, and Injury Severity Score (ISS) was controlled by linear regression before the evaluation of the role of ORTHO injury pattern on outcome measures. Significance is noted at the 95% confidence level (p < 0.05). Results: The 165 patients studied averaged 37.2 ± 1.1 years in age and were 67% men. The mean ISS was 14.4 ± 0.6 and 61% had ORTHO injury. ORTHO patients were no different from nonORTHO in any measure of baseline status including the SIPw score and all domains of the SF36, except that the ISS was greater in the ORTHO group (15.6 ± 0.96 vs. 12.7 ± 0.73, p = 0.017). Baseline SF36 values were similar to national norms. Follow-up was 75% at 6 months, and 51% at 12 months. Those lost to follow-up differed only in that they were more likely to be men. Sixty-four percent had returned to work 12 months after injury. After controlling for ISS with linear regression, the ORTHO patients had worse scores on all physical measures of the SF36 (bodily pain, physical function, and role-physical). By 12 months after injury, the relative dysfunction of the ORTHO patients had expanded to include the SIPw score (p = 0.016) and six of eight SF36 domains (bodily pain, physical function, role-physical, mental health, role-emotional, and social function, all p < 0.05). Conclusion: Injury severity affects both mortality and the potentially more consequential issues of long-term morbidity. Patients with ORTHO injury have relatively worse functional recovery, and this worsens with time. As trauma centers approach the limits of achievable survival, new advances in trauma care can be directed more toward the quality of recovery for our patients. This will be contingent on further development of screening, scoring, and treatment systems designed to address issues of functional outcome across injury boundaries for those who survive.
45526087
Preinjury Status: Are Orthopaedic Trauma Patients Different Than the General Population?
Objective: To describe the preinjury health-related quality of life (HRQL) of orthopaedic trauma patients admitted to Level I trauma centers relative to the general population. Design: Prospective cohort study using retrospectively collected preinjury HRQL measures. Setting: Two Level I adult trauma centers in Melbourne, Australia. Participants: A total of 2388 admitted orthopaedic trauma patients aged ≥18 years were included, captured by the Victorian Orthopaedic Trauma Outcomes Registry (VOTOR) between October 2003 and January 2006. Patients with a significant head injury (Abbreviated Injury Scale severity score >2), dementia, mental illness, mental disability, who were non-English speakers, or who were postoperatively confused were excluded. Main Outcome Measurements: The 12-item Short Form Health Survey (SF-12). Results: The preinjury SF-12 was obtained for 1839 patients [median (interquartile range) of 6 (3-12) days postinjury]. The VOTOR population reported mean physical SF-12 scores above population norms (50.9 vs. 48.9, P < 0.001). The differences were predominant in men and confined to patients aged 18 to 54 years. The mean mental SF-12 scores of the VOTOR population were also greater than population norms (54.5 vs. 52.4, P < 0.001) and this was most apparent for women. Conclusions: Establishing the preinjury HRQL of trauma patients is important for evaluating the quality of orthopaedic trauma patient outcomes. Reliance on population norms for this purpose may lead to an underestimation of the impact of injury in particular age and sex subgroups, but given the size of the differences seen, any underestimation would be small. Where individual preinjury data cannot be collected, population norms could be used as a reasonable estimate of preinjury patient status for assessing quality of recovery.
34317917
Retrospective baseline measurement of self-reported health status and health-related quality of life versus population norms in the evaluation of post-injury losses
Background: Owing to the difficulty in prospectively measuring pre-injury health status and health-related quality of life (HRQL) in an injured cohort, population norms or retrospective baseline scores are often used as comparators for evaluating post-injury losses. However, there has been little discussion in the literature or research into the soundness of these approaches for this purpose. Objectives: To investigate the appropriateness of the retrospectively measured baseline health status and HRQL in an injured population for the purpose of evaluating post-injury losses. Methods: A cohort of injured admitted to hospital (n = 186) was followed up for 12 months after injury. Retrospectively measured pre-injury health status and HRQL scores were compared with those at 12 months after injury for participants who reported complete recovery (n = 61) and those who did not. Retrospective baseline scores for the whole cohort were also compared with Australian population norms. Results: For participants who completely recovered, no significant difference was observed between scores at baseline (measured retrospectively) and those at 12 months after injury (36-item Short Form Questionnaire physical component summary z = −1.274, p = 0.203; 36-item Short Form Questionnaire mental component summary z = −1.634, p = 0.102; Short Form 6 Dimensions: z = −1.405, p = 0.296). A borderline significant difference was observed in HRQL as measured by the Assessment of Quality of Life (z = −1.970, p = 0.049). Retrospectively measured pre-injury scores were consistently higher than Australian norms for all measures. Conclusions: The injured population may not be representative of the general population. Consequently, retrospective baseline measurement of pre-injury health states may be more appropriate than general population norms for the purpose of evaluating post-injury losses in this population.
16498790
Measuring the Population Burden of Injuries—Implications for Global and National Estimates: A Multi-centre Prospective UK Longitudinal Study
Ronan Lyons and colleagues compared the population burden of injuries using different approaches from the UK Burden of Injury and Global Burden of Disease studies and find that the absolute UK burden of injury is higher than previously estimated.
31658871
Post-concussion symptom reporting and the "good-old-days" bias following mild traumatic brain injury.
The purpose of this study was to examine the influence of the "good-old-days" bias on symptom reporting following mild traumatic brain injury (MTBI). The MTBI sample consisted of 86 patients (51.2% men) referred to a hospital-based concussion clinic in Vancouver, Canada. The majority of patients (83.7%) were evaluated within 3 months following their injury (M = 1.8 months, SD = 1.7, range = 0.2-8.0 months). Patients provided retrospective preinjury symptom ratings on the British Columbia Post-Concussion Symptom Inventory (BC-PSI). Ratings were compared with 177 healthy controls recruited from the community and a local university. MTBI retrospective ratings were significantly lower than the control group on the BC-PSI total score (p < .01, d = 0.27, small effect size) and 6 of the 13 individual items (all p < .05, d = 0.23-0.36, small to small-medium effect sizes). Patients who were currently in litigation reported more post-injury symptoms (p = .009, d = 0.63, medium-large effect size). However, litigation status was not associated with self-reported preinjury retrospective symptom ratings. Consistent with the "good-old-days" bias, patients with MTBI appear to misperceive their preinjury functioning as better than the average person.
16143453
Health related quality of life in trauma patients. Data from a one-year follow up study compared with the general population
BackgroundTrauma patients have impaired health-related quality of life (HRQOL) after trauma. The aim of the study was to assess HRQOL during the first year after trauma and hospital stay in trauma patients admitted to an intensive-care unit (ICU) for >24 hours compared with non-ICU trauma patients and the general population, and to identify predictors of HRQOL.MethodsA prospective one-year follow-up study of 242 trauma patients received by the trauma team of a trauma referral centre in Norway was performed. HRQOL was measured using the Medical Outcomes Study Short Form 36 (SF-36) at 3 and 12 months.ResultsThe mean age of the cohort was 42.3 years (95% CI, 40.4-44.3 years). The median Injury Severity Score (ISS) was 10, interquartile range 16. The HRQOL improved significantly from the 3 to the 12 months follow up in the trauma patients. However their scores were significantly lower for most subscales of SF-36 compared to the general population. Significant differences between ICU and non-ICU patients at 12 months were observed only for physical functioning and role physical subscales. Optimism was an independent predictor of good HRQOL at 12 months, in all dimensions (beta, 0.95-2.45). A higher depression score at baseline predicted lower HRQOL in four of eight dimensions (beta -1.1 to -1.70). In addition, better physical functioning was predicted by lower age (beta, -0.20), and having head injury (reference) as the most severe injury vs. spine or extremity injuries (beta, -9.49 and -10.85), and better mental health by higher age (beta, 0.21) and being employed or studying before the trauma (beta, 12.27). In addition to optimism good general health was predicted by lower score for post-traumatic stress (PTS) symptoms at baseline (beta, -0.27) and lower ISS score (beta -10.59).ConclusionsThe HRQOL improved significantly from the 3 to the 12 months follow up in our sample. However their scores were significantly lower for most subscales of SF-36 compared to the general population. Significant differences between ICU and non-ICU patients were observed for only two subscales. Better HRQOL at 12 months was predicted mainly by optimism, low score for depression and PTS symptoms at baseline. High ISS predicted low general health exclusively.
2740018
Retrospective evaluation versus population norms for the measurement of baseline health status
BackgroundPatient recall or the application of population norms are commonly used methods to estimate (unobservable) health status prior to acute-onset illness or injury; however, both measures are potentially subject to bias. This article reports tests of the validity of both approaches, and discusses the implications for reporting changes in health-related quality of life following acute-onset illness or injury.MethodsRecalled pre-injury health status and health status at 5- and 12-months post-injury were collected from participants in a prospective cohort study of people injured in New Zealand. Reported post-injury health status was compared with recalled pre-injury status and New Zealand norms for two groups: those who reported having fully recovered, and those who had not.ResultsThere was a small but statistically significant difference between pre- and post-injury health state valuations for people who had fully recovered, with recalled pre-injury health status being higher than reported post-injury health. Perceived health status for those who had fully recovered was significantly higher than the population norm.ConclusionsRetrospective evaluation of health status is more appropriate than the application of population norms to estimate health status prior to acute-onset injury or illness, although there may be a small upward bias in such measurements.
186568
Determinants of disability after lower extremity fracture.
BACKGROUND
Factors influencing the progression of physical impairment to patient-perceived disability are not well known. We sought to better understand this relationship in the setting of injury.


METHODS
We followed a cohort of 302 patients with lower extremity fractures over a 1-year period. Physical impairment was assessed by range of motion, strength, and pain. Range of motion and strength were assessed together as a proportion of normal function of the extremity (impairment score). Pain was assessed using a Visual Analogue Scale (VAS) pain score. Disability was assessed using the Sickness Impact Profile (SIP), a widely used measure of patient-perceived limitations of everyday activities attributable to illness. The SIP was administered during hospitalization to assess preinjury baseline. Impairment assessment and readministration of the SIP were performed at 12 months after injury.


RESULTS
Impairment in leg function (range of motion and strength) was highly correlated (p < 0.001) with overall SIP score at 12 months, but accounted for only 23% of the variance in overall SIP scores. Likewise, VAS pain score was highly correlated (p < 0.001) with overall SIP score at 12 months, but accounted for only 29% of the variance in overall SIP scores. In a multivariate linear regression analysis, variables that were independently associated with overall SIP score included impairment score, VAS pain score, preinjury SIP, poverty status, education status, social support, having hired a lawyer, and involvement with workers' compensation. These variables accounted for 52% of the variance in overall SIP scores at 12 months.


CONCLUSION
The degree of physical impairment accounts for only a small amount of the variance in disability from lower extremity fracture. Identifiable patient characteristics including age, socioeconomic status, preinjury health, and social support together with impairment account for over half of the variance in long-term disability. Further research is needed to increase understanding of other factors that influence the progression of impairment to disability, especially those factors that may be amenable to intervention.
44250233
Social memory in everyday life: Recall of self-events and other-events.
A self- and other-diary method was used to investigate the factors affecting memory for different aspects of real-world events
22506760
Answering autobiographical questions: the impact of memory and inference on surveys.
Survey questions often probe respondents for quantitative facts about events in their past: "During the last 2 weeks, on days when you drank liquor, about how many drinks did you have?" "During the past 12 months, how many visits did you make to a dentist?" "When did you last work at a full-time job?" are all examples from national surveys. Although questions like these make an implicit demand to remember and enumerate specific autobiographical episodes, respondents frequently have trouble complying because of limits on their ability to recall. In these situations, respondents resort to inferences that use partial information from memory to construct a numeric answer. Results from cognitive psychology can be useful in understanding and investigating these phenomena. In particular, cognitive research can help in identifying situations that inhibit or facilitate recall and can reveal inferences that affect the accuracy of respondents' answers.
42015414
Response-shift bias: a challenge to the assessment of patients' quality of life in cancer clinical trials.
Quality of life (QL) has become an increasingly important outcome parameter in randomized phase III clinical trials in patients with cancer. Such trials may evaluate the efficacy of both standard and experimental therapies in terms of patients’ physical, psychological and social functioning. A number of standardized QL self-report questionnaires that are designed specifically for the evaluation of cancer therapies are currently available, including the Functional Living Index-Cancer (FLIC) (11, the Functional Assessment of Cancer Therapy (FACT) (21, and the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30) (3). The psychometric properties of these measures are well documented. With the release of these instruments for general use, an important methodological impediment to the
22483119
Methods to detect response shift in quality of life data: A convergent validity study
When measuring changes in quality of life (QL) with a pretest-posttest design, response shift can affect results. We investigated the convergent validity of three approaches to detect response shift. (1) In the thentest approach, response shift is measured using a retrospective judgment of pretest QL-levels (thentest). (2) In the anchor–recalibration approach response shift is measured, assessing shifts in patients’ individual definitions of the scale-anchors (worst and best imaginable QL) over time. (3) In the Structural Equation Modeling (SEM) approach response shift is indicated by mathematically defined changes in factor solutions and variance–covariance matrices over time. Prior to and three months after invasive surgery, 170 cancer patients completed the SF-36, the Multidimensional Fatigue Inventory (as pre-, post-, and thentest), and the anchor–recalibration task (as pre-, and posttest). Results showed agreement between the thentest and SEM approach on the absence (6 scales) and presence (2 scales) of response shift in 8 of the 9 scales. For the ninth scale both methods detected response shift, but in opposite directions. Possible explanations for this discrepancy are discussed. The anchor–recalibration task agreed with the other approaches on only the absence of response shift in 4 of the 7 scales. The convergent results of thentest and SEM support their validity, especially because they use statistically independent operationalizations of response shift. In this study, recall bias did not invalidate thentest results.
540736
Response shift theory: an application for health-related quality of life in rehabilitation research and practice.
Evaluating change in patients over time can be challenging to any health care provider. Response shift theory is based on the change typology of alpha, beta, and gamma change and proposes that residual changes in self-response measures occur over time. These changes are the result of recalibration, reconceptualization, and reprioritization of internal standards and references utilized for self-appraisal. Failing to account for response shift may result in over- or under-reporting of true physiologic change. The purpose of this paper is to review the components of response shift, identify research designs used to detect it, and present a model for its practical application to rehabilitation of both acute and chronic disabilities. Awareness of response shifts throughout the rehabilitation process may be beneficial in guiding patient goal-setting, treatment, and education. Of particular emphasis is the role that the rehabilitation specialist can have in using the response shift process to result in the highest possible perceived quality of life for each individual patient.
29024339
International variation in intervention rates. What are the implications for patient selection?
While international variations in intervention rates are well recognized, little is known about their implications for patient selection. This paper describes an exploratory study in which the probability of undergoing an elective intervention (surgery for benign prostatic hyperplasia) in an area in the United Kingdom was compared with an area in the United States. It found that the area with high intervention rates was associated with higher levels of surgery in men with low levels of need who are unlikely to gain much benefit.
39527202
Questionnaire on the perceptions of patients about total hip replacement.
We developed a 12-item questionnaire for completion by patients having total hip replacement (THR). A prospective study of 220 patients was undertaken before operation and at follow-up six months later. Each completed the new questionnaire as well as the SF36, and some the Arthritis Impact Measurement Scales (AIMS). An orthopaedic surgeon assessed the Charnley hip score. The single score derived from the questionnaire had a high internal consistency. Reproducibility was examined by test-retest reliability and was found to be satisfactory. The validity of the questionnaire was established by obtaining significant correlation in the expected direction with the Charnley scores and relevant scales of the SF36 and the AIMS. Sensitivity to change was assessed by analysing the differences between the preoperative scores and those at the follow-up. The standardised effect size for the new questionnaire compared favourably with that for the SF36 and the AIMS. The new questionnaire provides a measure of outcome for THR which is short, practical, reliable, valid and sensitive to clinically important changes.
57493200
SF-36 health survey: Manual and interpretation guide
The SF-36 is a generic health status measure which has gained popularity as a measure of outcome in a wide variety of patient groups and social. The 36-Item Short-Form Health Survey (SF-36) and its shorter version, the SF-12, are the measures SF-36 Health Survey manual and interpretation guide. Health Services Research Unit, University of Oxford, Headington. Postal survey using a questionnaire booklet, containing the SF-36-II and questions. The SMFA, the health survey short form (SF-36) along with a region-specific questionnaire Gandek B. SF-36 Health Survey: Manual and Interpretation Guide. The SF Health Surveys capture practical, reliable and valid information about or need assistance with an FDA dossier, we will guide you every step of the way. The 36 Item Short Form Health Survey (SF-36) is a generic patient-reported outcome measure, SF-36 health survey: Manual and interpretation guide. Boston. The SF-36 Health Survey is a self-administered questionnaire of 36 questions to M, and Gendek, B. SF-36 Health Survey: Manual and Interpretation Guide. The patients' self-assessment of QL was measured with the SF-36TM form at 3, M & Gandek B. SF-36 Health Survey: Manual and Interpretation Guide 1993. We aimed to determine whether health outcomes (pain severity and quality of life Gandeck B. SF-36 Health survey manual and interpretation Guide. Boston:. Ware JE (1993) Health survey manual and interpretation guide. Thomas KJ, Usherwood T et al (1992) Validating the SF-36 health survey questionnaire: new. Health Related Quality of Life (HRQL) is one of the increasing subjects used Jr, Kristin KS., Kosinski M, SF-36 Health Survey Manual and Interpretation Guide. They commonly take up low paid manual jobs and work long hours (6), mostly live in conditions that SF-36 health survey : manual and interpretation guide. Additionally, the contribution of baseline health, sociodemographic and work-related factors to the SF-36 Health Survey: manual and interpretation guide. cal Outcomes Study 36-Item Short-Form Health Survey (SF-36) to reproduce the Physical Component SF-36 health survey: Manual and interpretation guide. results from a national survey. Archives of to test the construct validity of the SF-36 Health Survey in Ten Countries: Survey: manual and interpretation guide. The Short Form-36 health survey (SF-36v2) is a widely used patient-reported Dewey JE, Gandek B. SF-36 health survey: manual and interpretation guide. Ware JE, Snow KK, Kosinski M, Gandek B. SF-36 Health Survey Manual and Interpretation Guide. Boston, MA: New England Medical Center, the Health Institute. The Short Form Health Survey 36 (SF-36) and a cross-cultural validated Snow KK, Kosinski M. SF-36 Health Survey: Manual and Interpretation Guide. the SF-36 Health Survey subscales, the Hospital Anxiety and Depression Scale. Social Provisions activities emerged as enhancing meaning in life for the residents. A systematic their experience regarding the questions in the interview guide. SF-36 Health Survey manual and interpretation guide. Boston:. ABSTRACT Regression methods were used to select and score 12 items from the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36). SF-36 physical function tended to be better with the HFC (p=0.08) in addition to SF-36 SF-36 Health Survey Manual and Interpretation Guide. Boston: The. HRQL was measured by the Greek version of SF-36 Health Survey and further B., Kosinski, M. SF-36 Health Survey Manual and Interpretation Guide. SF-36 ® (MOS 36-Item Short-Form Health Survey) SF-36 ® ? PDFSF-36 Health Survey Manual and Interpretation Guide John E. Ware, Jr., Ph.D. with Kristin K. Subjects (N = 79) completed the SF-36 at baseline and every three weeks throughout the treatment SF-36v2 health survey: manual and interpretation guide.
39147382
Comparison of the WOMAC (Western Ontario and McMaster Universities) osteoarthritis index and a self-report format of the self-administered Lequesne-Algofunctional index in patients with knee and hip osteoarthritis.
OBJECTIVE
To compare the metric properties and validity of German versions of the WOMAC (Western Ontario and McMaster Universities) and a self-administered questionnaire-format of the Lequesne-Algofunctional-Index in patients with osteoarthritis (OA) of the lower extremities.


DESIGN
Cross-sectional analysis of the instruments' internal consistency (Cronbach's coefficient alpha) and construct validity (correlation with radiological OA-severity and limitation in range-of-motion) in ambulatory patients and patients before hip arthroplasty. Test-retest reliability was assessed on a subsample after 10 days.


RESULTS
Data from 51 patients out of 91 contacted could be analyzed. Twenty-nine patients had knee and 22 patients had hip OA. Both the WOMAC and Lequesne OA-indices and their scales or sections had a satisfactory test-retest reliability (Intraclass correlation coefficient 0.43-0.96). All scales of the WOMAC were internally consistent (Cronbach's coefficient alpha 0.81-0.96) and associated with radiological OA-severity and joint range of motion. However, only the function but not the symptom sections (Cronbach's coefficient alpha knee: 0.55; hip: 0.63) of the self-administered Lequesne OA index were internally consistent for both, patients with knee and hip OA. Also, the symptom components were not or only weakly associated with radiological OA-severity and joint range of motion.


CONCLUSIONS
Although our results are based on a German version using a self-report format we may caution using the self-administered Lequesne OA index without prior testing of its metric properties and validity.
20152484
THE AMERICAN UROLOGICAL ASSOCIATION SYMPTOM INDEX FOR BENIGN PROSTATIC HYPERPLASIA
&NA; A symptom index for benign prostatic hyperplasia (BPH) was developed and validated by a multidisciplinary measurement committee of the American Urological Association (AUA). Validation studies were conducted involving a total of 210 BPH patients and 108 control subjects. The final AUA symptom index includes 7 questions covering frequency, nocturia, weak urinary stream, hesitancy, intermittence, incomplete emptying and urgency. On revalidation, the index was internally consistent (Cronbach's &agr; = 0.86) and the score generated had excellent test‐retest reliability (r = 0.92). Scores were highly correlated with subjects' global ratings of the magnitude of their urinary problem (r = 0.65 to 0.72) and powerfully discriminated between BPH and control subjects (receiver operating characteristic area 0.85). Finally, the index was sensitive to change, with preoperative scores decreasing from a mean of 17.6 to 7.1 by 4 weeks after prostatectomy (p <0.001). The AUA symptom index is clinically sensible, reliable, valid and responsive. It is practical for use in practice and for inclusion in research protocols.
74544288
IKDC Subjective Knee Form and Marx Activity Rating Scale are suitable to evaluate all orthopaedic sports medicine knee conditions: a systematic review
Importance Given the increasing importance and number of knee-related patient-reported outcome measures (PROMs), it would be desirable to have one PROM for assessing the outcomes of all patients with orthopaedic sports medicine knee conditions. Objective The purpose of this review was to evaluate whether the existing literature supports the use and interpretation of the International Knee Documentation Committee Subjective Knee Form (IKDC-SKF) and Marx Activity Rating Scale (MARS) as the primary PROMs in the setting of orthopaedic research or clinical practice. We hypothesised that the reported data for the psychometric properties of the IKDC-SKF and MARS would meet accepted standards for interpretation and use of PROMs. Evidence review A systematic search of MEDLINE was performed using PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines to identify articles reporting the development and psychometric properties of the IKDC-SKF and MARS. References of included articles were hand-searched to identify additional articles for inclusion. The results of these studies were extracted to determine if the reported psychometric properties for the IKDC-SKF and MARS met established standards. Findings The reported test–retest intraclass correlations (ICCs) for the IKDC-SKF and the MARS respectively range from 0.85 to 0.99 and 0.81 to 0.97 (ICC>0.70 considered acceptable). The reported effect sizes (ES) and standardised response means (SRM) ranged from 0.76 to 2.11 for the IKDC-SKF and from 0.57 to 1.5 for the MARS (ES/SRM >0.5 or >0.8 are respectively considered moderate and large). The IKDC-SKF has been reported to show moderate/excellent correlations with 60/72 (83%) concomitantly administered measures of physical health and poor/fair correlations with 28/31 (90%) measures of mental health, thus demonstrating its convergent and divergent validity. The MARS has shown moderate/excellent correlations with 3/3 (100%) concomitantly administered measures of level of sports activities, which demonstrates its convergent validity. Standards for interpreting the IKDC-SKF, including the minimal detectable change, minimum clinically important difference, normative data and the patient acceptable symptom state, are also summarised. Conclusions and relevance This review suggests that the IKDC-SKF and MARS have acceptable psychometric properties to support their use and interpretation to assess the clinical response of patients with a variety of knee conditions in clinical practice and research settings.
20565731
Development and Validation of the Quality Of Life Outcome Measure (Questionnaire) for Chronic Anterior Cruciate Ligament Deficiency
A patient-based, subjective outcome measure for chronic anterior cruciate ligament deficiency was developed, pretested, and validated. The development of the outcome measure was completed in four stages: 1) item generation (167 items), 2) item reduction (by surveying 79 patients), 3) questionnaire formation and pretesting (20 patients), and 4) reliability, responsiveness, and validity assessment (100 patients). This disease-specific quality of life measure is a 32-item questionnaire using a 100-mm visual analog scale response format. Face validity was derived from extensive direct patient input. Content validity was determined by consensus among 20 knee surgeons. There was no significant difference on test-retest reliability, with an overall average error of 6%. The outcome measure demonstrated responsiveness to clinical change correctly in 21 of 25 patients (84%). Construct validity was shown by the ability of the questionnaire to measure the full spectrum of disease; scores ranged from 8 to 99 out of a maximum score of 100. The questionnaire was able to distinguish patients who went on to have surgery (average score, 31) from those who would be treated nonoperatively (average score, 79). The quality of life outcome measure for chronic anterior cruciate ligament deficiency is the first subjective knee scale of its kind to be validated to measure quality of life in patients with chronic anterior cruciate ligament deficiency.