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The COVID-19 pandemic had a global impact on daily lives, and this study aimed to assess the effects on broader aspects of health in the general population of Norway. This population-based cohort study assessed changes in health of the Norwegian general population from 3 months before to 9 months during the COVID-19 pandemic. Sampling was based on the results of Norwegian surveys designed for collecting general population norms for health measurement instruments. In December 2019, 12,790 randomly selected adults aged ≥18 years received a postal questionnaire. The 3,200 respondents received a similar follow-up postal questionnaire including the EQ-5D-5L, PROMIS-29 instruments, and questions about respondents having or having had COVID-19. Score changes were compared to estimates for the minimal important change (MIC) and age-related change. Association of instrument change scores with baseline characteristics, health problems, and having had COVID-19 was determined using multivariable linear regression. Of 3101 respondents with unchanged addresses, 2423 (78.1%) responded to the second survey. For all respondents, EQ VAS and PROMIS-29 scores for 6 of 8 domains were slightly poorer (p<0.01) than before COVID-19, and the mean change was below the MIC. In multivariable analyses, the greatest number of poorer outcomes were associated with being female, 18–29 years, or ≥80 years of age (p<0.01); > MIC for ≥ 80 years of age and EQ-5D index, PROMIS-29 physical function and social participation. Respondents who had COVID-19 had poorer outcomes for PROMIS-29 social participation (> MIC). Those reporting COVID-19 in their partner/family and not themselves, had poorer outcomes for PROMIS-29 anxiety and social participation. About 9 months into the COVID-19 pandemic, EQ-5D-5L and PROMIS-29 domain scores showed slightly poorer health in the Norwegian adult general population compared to 1 year earlier in the same respondents. The overall changes were less than expected for age-related change. Relatively poor outcomes defined as important, included general health and social participation for the elderly, and the latter for those having had COVID-19. In conclusion, this study found no evidence for a decline in important aspects of adult general population health in Norway that might be attributed to the pandemic at approximately 9 months. [ABSTRACT FROM AUTHOR]

Purpose: To develop the Norwegian value set for the EQ-5D-5L based on interviews with a representative sample of the Norwegian adult population.Random and quota sampling were used to recruit the sample of adults (age> 18 years) representative of the Norwegian general population. Data collection followed EQ-VT 2.1 undertaken before and after the COVID-19 pandemic from November 2019 to December 2022, using PC-assisted and video conferencing interviews, respectively. Each respondent valued 10 health states using composite time trade-off (cTTO) and 7 health states using a discrete choice experiment (DCE). Different statistical models were assessed for logical consistency and predictive accuracy using cTTO and DCE data alone or in combination as hybrid models.Of the 1,321 respondents, 1,237 met inclusion criteria. All statistical models demonstrated logical consistency. The weighted hybrid model combining both cTTOand DCE data was preferred and had the highest predictive accuracy. Predicted values ranged from -0.453 to 1, and the dimension of anxiety/depression was the most highly valued by respondents, followed by pain/discomfort, self-care, mobility, and usual activities. These findings are not dissimilar to those for most Western European countries, and regression coefficients are closest to those for other Scandinavian countries.This study provides the Norwegian value set for the EQ-5D-5L based on health state values obtained from members of the adult general population in Norway. This is an important contribution to economic evaluation and the broader application ofthe EQ-5D-5L in Norway including clinical and health services research, and quality measurement.Methods: To develop the Norwegian value set for the EQ-5D-5L based on interviews with a representative sample of the Norwegian adult population.Random and quota sampling were used to recruit the sample of adults (age> 18 years) representative of the Norwegian general population. Data collection followed EQ-VT 2.1 undertaken before and after the COVID-19 pandemic from November 2019 to December 2022, using PC-assisted and video conferencing interviews, respectively. Each respondent valued 10 health states using composite time trade-off (cTTO) and 7 health states using a discrete choice experiment (DCE). Different statistical models were assessed for logical consistency and predictive accuracy using cTTO and DCE data alone or in combination as hybrid models.Of the 1,321 respondents, 1,237 met inclusion criteria. All statistical models demonstrated logical consistency. The weighted hybrid model combining both cTTOand DCE data was preferred and had the highest predictive accuracy. Predicted values ranged from -0.453 to 1, and the dimension of anxiety/depression was the most highly valued by respondents, followed by pain/discomfort, self-care, mobility, and usual activities. These findings are not dissimilar to those for most Western European countries, and regression coefficients are closest to those for other Scandinavian countries.This study provides the Norwegian value set for the EQ-5D-5L based on health state values obtained from members of the adult general population in Norway. This is an important contribution to economic evaluation and the broader application ofthe EQ-5D-5L in Norway including clinical and health services research, and quality measurement.Results: To develop the Norwegian value set for the EQ-5D-5L based on interviews with a representative sample of the Norwegian adult population.Random and quota sampling were used to recruit the sample of adults (age> 18 years) representative of the Norwegian general population. Data collection followed EQ-VT 2.1 undertaken before and after the COVID-19 pandemic from November 2019 to December 2022, using PC-assisted and video conferencing interviews, respectively. Each respondent valued 10 health states using composite time trade-off (cTTO) and 7 health states using a discrete choice experiment (DCE). Different statistical models were assessed for logical consistency and predictive accuracy using cTTO and DCE data alone or in combination as hybrid models.Of the 1,321 respondents, 1,237 met inclusion criteria. All statistical models demonstrated logical consistency. The weighted hybrid model combining both cTTOand DCE data was preferred and had the highest predictive accuracy. Predicted values ranged from -0.453 to 1, and the dimension of anxiety/depression was the most highly valued by respondents, followed by pain/discomfort, self-care, mobility, and usual activities. These findings are not dissimilar to those for most Western European countries, and regression coefficients are closest to those for other Scandinavian countries.This study provides the Norwegian value set for the EQ-5D-5L based on health state values obtained from members of the adult general population in Norway. This is an important contribution to economic evaluation and the broader application ofthe EQ-5D-5L in Norway including clinical and health services research, and quality measurement.Conclusion: To develop the Norwegian value set for the EQ-5D-5L based on interviews with a representative sample of the Norwegian adult population.Random and quota sampling were used to recruit the sample of adults (age> 18 years) representative of the Norwegian general population. Data collection followed EQ-VT 2.1 undertaken before and after the COVID-19 pandemic from November 2019 to December 2022, using PC-assisted and video conferencing interviews, respectively. Each respondent valued 10 health states using composite time trade-off (cTTO) and 7 health states using a discrete choice experiment (DCE). Different statistical models were assessed for logical consistency and predictive accuracy using cTTO and DCE data alone or in combination as hybrid models.Of the 1,321 respondents, 1,237 met inclusion criteria. All statistical models demonstrated logical consistency. The weighted hybrid model combining both cTTOand DCE data was preferred and had the highest predictive accuracy. Predicted values ranged from -0.453 to 1, and the dimension of anxiety/depression was the most highly valued by respondents, followed by pain/discomfort, self-care, mobility, and usual activities. These findings are not dissimilar to those for most Western European countries, and regression coefficients are closest to those for other Scandinavian countries.This study provides the Norwegian value set for the EQ-5D-5L based on health state values obtained from members of the adult general population in Norway. This is an important contribution to economic evaluation and the broader application ofthe EQ-5D-5L in Norway including clinical and health services research, and quality measurement. [ABSTRACT FROM AUTHOR]

Purpose: To undertake the first testing and comparison of measurement properties for the EuroQol EQ-5D-3L and 5L in patients with ankle problems. Methods: The cross-sectional postal survey of 959 patients aged ≥ 18 years, who underwent surgical treatment (ORIF) for unstable and closed ankle fractures in Eastern Norway. Both the EQ-5D-3L and 5L were included in a postal questionnaire in 2015, 3–6 years post surgery. Missing data, floor and ceiling effects, and response consistency were assessed. Tests of validity included comparisons with scores for the SF-36 and widely used ankle-specific instruments. The 5L version was assessed for test–retest reliability. Results: There were 567 (59%) respondents; 501 completed both versions and 182 (61%) the 5L retest questionnaire. The 5L outperformed the 3L in tests of data quality and classification efficiency. Correlations with scores for other instruments largely met expectations, those for the 5L being slightly higher. All 5L scores had acceptable levels of reliability. For the 5L index, the smallest detectable differences for group and individual comparisons were 0.02 and 0.20, respectively. Conclusion: The 5L outperformed the 3L in terms of data quality, number of health states assessed and tests of validity. The 5L is recommended in research and other applications following surgery for ankle fracture but further testing including responsiveness to change is recommended at clinically relevant follow-up periods. [ABSTRACT FROM AUTHOR]

Background: Patient engagement is recommended for improving health care services, and to evaluate its organisation and impact appropriate, and rigorously evaluated outcome measures are needed.Methods: Interviews (N = 12) were conducted to assess relevance of the Canadian Public and Patient Engagement Evaluation Tool (PPEET) in a Norwegian setting were performed. The tool was translated, back translated, and assessed following cognitive interviews (N = 13), according to the COSMIN checklist. Data quality was assessed in a cross-sectional survey of patient advisory board members from different rehabilitation institutions (N = 47).Results: Interviews with patient board representatives confirmed the relevance of the PPEET Organisational questionnaire in a Norwegian setting and contributed five additional items. Translation and back translation of the original PPEET showed no major content differences. Differences in vocabulary and sentence structure were solved by discussion among the translators. Comments from cognitive interviews mainly related to the use of different synonyms, layout, and minor differences in semantic structure. Results of the cross-sectional survey support the data quality and construct validity of PPEET items, including 95 score comparisons where 76 (80%) were as hypothesized.Conclusions: The PPEET Organisational questionnaire has been thoroughly translated and tested, and the resulting Evalueringsverktøy for Brukermedvirkning (EBNOR) has adequate levels of comprehensibility and content validity. Further testing for measurement properties is recommended, but given these results, the EBNOR should be considered for assessing patient engagement in a Norwegian health care organisational context. [ABSTRACT FROM AUTHOR]

Purpose: To provide the first Norwegian EQ-5D-5L and EQ VAS population norms for the adult general population. Methods: Postal survey of a random sample of 12,790 Norwegians identified through the National Registry of the Norwegian Tax Administration. Norms, weighted for Norwegian general population characteristics, are shown for the five EQ-5D-5L dimensions, EQ-5D index, and EQ VAS scores for seven age categories, females, males, and education level. Results: There were 3200 (25.9%) respondents to 12,263 correctly addressed questionnaires. The EQ-5D-5L dimensions, EQ VAS, and background questions were completed by 3120 (24.6%) respondents. The mean age (SD) was 50.9 (21.7) and range was 18–97 years. The youngest age group of 18–29 years and oldest of 80 years and over had the highest (n = 691) and lowest (n = 239) number of respondents, respectively. Compared to the general population, the respondents comprised a greater number of females, younger and older ages, and had a higher education level. 32% of respondents reported no health problems on the EQ-5D-5L. From the youngest to oldest age groups, there was a general decline in health as assessed by the EQ-5D-5L. The exception was for anxiety/depression, where the youngest age groups had the poorest health. Apart from self-care, women reported poorer health than men, as assessed by the EQ-5D-5L; EQ VAS scores were similar for men and women. Higher levels of health (EQ-5D index, EQ VAS scores) were found with increasing levels of education. Conclusion: The population norms will improve interpretation of EQ-5D-5L and EQ VAS scores in Norwegian applications including clinical practice, clinical and health services research, and national quality registers where EQ-5D-5L is the most widely used patient-reported instrument. [ABSTRACT FROM AUTHOR]

Purpose: Standard gamble (SG) is the preferred method of assessing preferences in situations with uncertainty and risk, which makes it relevant to patients considered for aortic valve replacement (AVR). The present study assesses SG preferences in patients with severe aortic stenosis (AS).Methods: All patients >18 years old with severe AS referred for AVR to our institution were invited to enroll in the study. The SG was administered by a clinical research nurse. The SF-36, EQ-5D 3L, Hospital Anxiety and Depression Scale (HADS), and AS symptoms were administered by self-completed questionnaire. We hypothesized that SG utilities would have low-to-moderate correlations with physical and mental aspects of health based on our pathophysiological understanding of severe AS. No correlations were expected with echocardiographic measures of the aortic valve.Results: The response rate for SG was 98 %. SG moderately correlated with physical aspects of SF-36 (PCS, role-physical, vitality), health transition, AS symptoms, and EQ-VAS (ρ S = 0.31-0.39, p < 0.001) and had low correlation with mental aspects of SF-36 and EQ-5D (ρ S = 0.17-0.28, p < 0.001). No correlation was found between SG and HADS, echocardiographic measures, age, gender, or education level (ρ S = 0.01-0.06).Conclusions: SG is an acceptable and feasible method of assessing preferences in patients with severe AS that has evidence for validity. The inclusion of uncertainty lends the SG face validity in this population as a direct approach to assessing preferences and basis for QALY calculations. [ABSTRACT FROM AUTHOR]

Purpose: To evaluate the stages of completion and approaches to scoring the PGI for reliability, validity and responsiveness.Methods: Participants of inpatient rehabilitation or self-management programmes completed the closed PGI with the same areas at 1 year as baseline. Test-retest reliability, validity and responsiveness were assessed for area scores (stage one), points (stage two) and methods of scoring the PGI.Results: One hundred and forty-five patients participated, and 118 (81 %) completed the PGI correctly. Test-retest intraclass correlations were over 0.90 for area scores (stage two) and were 0.87 and 0.86 for final PGI scores with and without the sixth "rest of life" box. Individual area scores had the highest correlations with those for instruments assessing similar constructs; those for the area "rest of life" were lower. Compared to scores based on the sum of the stage two areas, PGI scores had higher correlations of a moderate level with those for patient-reported instruments widely used within rheumatology. Correlations were of a similar level with and without the sixth "rest of life" area, and those based on baseline points at follow-up were highest. The PGI had higher SRMs than the other instruments at 1 year, the highest being for PGI scores based on baseline points.Conclusions: The fully closed version of the PGI, which uses baseline areas and baseline stage three points at follow-up, is most appropriate for assessing outcomes within healthcare evaluation. The sixth "rest of life" area has poorer measurement properties, and its removal does not adversely affect the measurement properties of the PGI. [ABSTRACT FROM AUTHOR]

Background: An individualized patient reported outcome (PRO) has recently been recommended within LBP research, but no study has evaluated this instrument with commonly applied PROs. Moreover, the impact of psychological factors has mostly been assessed for disease-specific instruments. The objective of this study was to assess the predictive value of illness perceptions, pain catastrophizing and psychological distress on 12 month outcomes assessed by specific, generic and individualized PROs recommended in low back pain (LBP).Methods: Secondary analysis of patients with sub-acute or chronic LBP recruited for a cluster randomized controlled trial in primary care who completed a self-administered questionnaire at baseline and 12 months. 12 month scores for the Roland Morris Disability Questionnaire (RMDQ), the EuroQol (EQ-5D), and the Patient Generated Index (PGI) were dependent variables in hierarchical regression analysis. Independent variables included baseline scores for the Brief Illness Perceptions Questionnaire (Brief IPQ), Hopkins Symptom Check List (HSCL-25), Pain Catastrophizing Scale (PCS), health/clinical and sociodemographic variables.Results: Of the 216 eligible patients included, 203 patients responded to the baseline questionnaire and 150 (74%) responded at 12 months. The mean age was 38.3 (SD 10.2) years and 57.6% were female. The Brief IPQ showed a statistically significant variation in the 12-months score of all the PROs, explaining 2.5% in RMDQ, 7.9% in EQ-5D, and 3.6% in PGI. Most of the explained variation for EQ-5D scores related to illness perceptions. The PCS explained 3.7% of the RMDQ and 2.5% in the EQ-5D scores. The HSCL-25 did not make a significant contribution.Conclusion: Illness perceptions and pain catastrophizing were associated with 12-month outcomes as assessed by condition-specific, generic and individualized PROs. The Brief IPQ and PCS have relevance to applications in primary care that include interventions designed to enhance psychological aspects of health and where the contribution of such variables to outcomes is of interest. Further studies should assess whether the Brief IPQ perform similarly in LBP populations in other health care settings. [ABSTRACT FROM AUTHOR]

The measurement properties of instruments assessing self-efficacy (SE) in patients with rheumatic diseases were reviewed. The consensus-based standards for the selection of health measurement instruments (COSMIN) checklist was applied following systematic searches of seven electronic databases from 1989 to December 2011. Fifteen articles met the inclusion criteria that included the arthritis SE scales (ASES), generalized SE scale (GSES), joint protection SE scale (JP-SES), Marcus & Resnick SE exercise behaviour (SEEB) instruments, and RA SE scale (RASE). The ASES and RASE have undergone more than one evaluation. There was little formal evaluation of content validity for the instruments. Evidence for the RASE suggests that it is not unidimensional. The JP-SES and SEEB were evaluated using modern psychometric methods. The instruments require further evaluation before application. The quality of the evidence for the ASES and RASE is generally poor. The generic focus of the GSES limits its relevance. The JP-SES and SEEB have only undergone one evaluation and that relating to the latter was narrow in scope. Future studies should address these methodological weaknesses. [ABSTRACT FROM PUBLISHER]

Objectives: To assess the responsiveness of the KQoL-26 and demonstrate minimal change for this instrument in two different samples of patients with suspected internal derangement of the knee. Methods: Data were collected from two surveys conducted alongside a clinical trial: the arthroscopy sample and the general practitioner (GP) sample. The effect size (ES) was used to assess responsiveness. Anchor-based minimal change included minimal clinical important difference (MCID) and receiver operator characteristic curves; standardized error of measurement and minimal detectable change (MDC) was employed for distribution-based approaches. The KQoL-26 results are compared with those for the Lysholm Knee Score, EQ-5D and SF-36. Results: The arthroscopy sample consisted of 121 participants and the GP sample of 218 participants at baseline. The largest ES was found for the KQoL-26 emotional functioning scale in both samples. The results were in favour of the condition-specific instrument. The MCID for KQoL-26 physical functioning, activities limitations and emotional functioning scales were 3, 15 and 18, respectively, in the arthroscopy sample; they were 11, 16 and 24 in the GP sample. The MDC 95 % was estimated as 18, 28 and 34, and 15, 24 and 30 in each sample, respectively. Conclusions: The KQoL-26 emotional functional scale was the most responsive of all scales. It is recommended that an instrument such as the KQoL-26 that includes emotional functioning should be included rather than the Lysholm in future clinical trials of patients with suspected internal derangement of the knee. [ABSTRACT FROM AUTHOR]

Background The national survey of parent experiences with inpatient pediatric care contribute to the Norwegian system of health care quality indicators. This article reports on the statistical association between parent experiences of inpatient pediatric care and aspects of health care delivery, child health status and health outcome as assessed by the parents, and the parents' sociodemographic characteristics. Methods 6,160 parents of children who were inpatients at one of Norway's 20 pediatric departments in 2005 were contacted to take part in a survey that included the Parent Experience of Pediatric Care questionnaire. It includes 25 items that form six scales measuring parent experiences: doctor services, hospital facilities, information discharge, information about examinations and tests, nursing services and organization. The six scales were analyzed using OLS-regression. Results 3,308 (53.8%) responded. Mean scores ranged from 62.81 (organization) to 72.80 (hospital facilities) on a 0-100 scale where 100 is the best possible experience. Disappointment with staff, unexpected waiting, information regarding new medication, whether the staff were successful in easing the child's pain, incorrect treatment and number of previous admissions had a statistically significant association with at least five of the PEPC scale scores. Disappointment with staff had the strongest association. Most sociodemographic characteristics had weak or no associations with parent experiences. Conclusions The complete relief of the child's pain, reducing unexpected waiting and disappointment with staff, and providing good information about new medication are aspects of health care that should be considered in initiatives designed to improve parent experiences. In the Norwegian context parent experiences vary little by parents' socio demographic characteristics. [ABSTRACT FROM AUTHOR]

Background. There is little evidence for the measurement properties of instruments commonly used for women with pelvic girdle pain. Objective. The aim of this study was to examine the internal consistency, test-retest reliability, and construct validity of instruments used for women with pelvic girdle pain. Design. This was a cross-sectional methodology study, including test-retest reliability assessment. Methods. Women with pelvic girdle pain in pregnancy and after delivery participated in a postal survey that included the Pelvic Girdle Questionnaire (PGQ), Oswestry Disability Index (ODI), Disability Rating Index (DRI), Fear-Avoidance Beliefs Questionnaire (FABQ), Pain Catastrophizing Scale (PCS), and 8-item version of the Medical Outcomes Study 36-Item Short-Form Health Survey questionnaire (SF-36). Test-retest reliability was assessed with a random subsample 1 week later. Internal consistency was assessed with the Cronbach alpha, and test-retest reliability was assessed with the intraclass correlation coefficient (ICC) and minimal detectable change (MDC). Construct validity based on hypotheses was assessed by correlation analysis. Discriminant validity was assessed with the area under the receiver operating characteristic curve. Results. All participants responded to the main (N=87) and test-retest (n=42) surveys. Cronbach alpha values ranged from .88 to .94, and ICCs ranged from .78 to .94. The MDC at the individual level constituted about 7% to 14% of total scores for the 8-item version of the SF-36, ODI, and PGQ activity subscale; about 18% to 22% for the DRI, PGQ symptom subscale, and PCS; and about 25% for the FABQ. Hypotheses were mostly confirmed by correlations between the instruments. The PGQ was the only instrument that significantly discriminated participants who were pregnant from participants who were not pregnant as well as pain locations. Limitations. A comparison of responsiveness to change of the various instruments used in this study was not undertaken, but will be carried out in a future study. Conclusions. Self-report instruments for assessing health showed good internal consistency, test-retest reliability, and construct validity for women with pelvic girdle pain. The PGQ was the only instrument with satisfactory discriminant validity, thus, it is recommended for evaluating symptoms and disability in patients with pelvic girdle pain. [ABSTRACT FROM AUTHOR]

Background. No appropriate measures have been specifically developed for pelvic girdle pain (PGP). There is a need for suitable outcome measures that are reliable and valid for people with PGP for use in research and clinical practice. Objective. The objective of this study was to develop a condition-specific measure, the Pelvic Girdle Questionnaire (PGQ), for use during pregnancy and postpartum. Design. This was a methodology study. Methods. Items were developed from a literature review and information from a focus group of people who consulted physical therapists for PGP. Face validity and content validity were assessed by classifying the items according to the World Health Organization's International Classification of Functioning, Disability and Health. After a pilot study, the PGQ was administered to participants with clinically verified PGP by means of a postal questionnaire in 2 surveys. The first survey included 94 participants (52 pregnant), and the second survey included 87 participants (43 pregnant). Rasch analysis was used for item reduction, and the PGQ was assessed for unidimensionality, item fit, redundancy, and differential item functioning. Test-retest reliability was assessed with a random sample of 42 participants. Results. The analysis resulted in a questionnaire consisting of 20 activity items and 5 symptom items on a 4-point response scale. The items in both subscales showed a good fit to the Rasch model, with acceptable internal consistency, satisfactory fit residuals, and no disordered threshold. Test-retest reliability showed high intraclass correlation coefficient estimates: .93 (95% confidence interval=0.86-0.96) for the PGQ activity subscale and .91 (95% confidence interval=0.84-0.95) for the PGQ symptom subscale. Limitations. The PGQ should be compared with low back pain questionnaires as part of a concurrent evaluation of measurement properties, including validity and responsiveness to change. Conclusions. The PGQ is the first condition-specific measure developed for people with PGP. The PGQ had acceptably high reliability and validity in people with PGP both during pregnancy and postpartum, it is simple to administer, and it is feasible for use in clinical practice. [ABSTRACT FROM AUTHOR]

Abstract: Objective: To assess the data quality of two approaches to scaling items within the Patient Experiences Questionnaire (PEQ); a five-point scale with descriptors for all scale points and a 10-point scale with descriptors only at the end points. Study Design and Setting: The two versions were pretested through cognitive interviews with 14 patients. The PEQ was then mailed to 1,000 patients after inpatient treatment at a large university hospital in Norway, randomized to receive the 5- or 10-point scale versions. Response rates, missing data, item means, floor, and ceiling effects were assessed. Regression analysis was used to examine the impact of response scale on missing data, floor, and ceiling effects after controlling for age, education level, and health status. Results: The five-point scale produced data with unimodal and fairly symmetric distributions in contrast to the highly skewed J- and U-shaped distributions for the 10-point scale. The five-point scale data had significantly lower item means, floor, and ceiling effects. Regression analysis showed that the type of scale explained a significant component of the variation in both floor and ceiling effects. Conclusion: The five-point scale performed better than the 10-point scale and is more suitable for assessing patient experiences. The revised PEQ will be used in Norwegian national surveys. [Copyright &y& Elsevier]

Background: Development and evaluation of the PEQ-CAMHS Outpatients, a parent completed questionnaire to measure experiences of outpatient child and adolescent mental health services (CAMHS) in Norway. Methods: Literature review, parent interviews, pre-testing and a national survey of 17,080 parents of children who received care at one of the 86 outpatient CAMHS in Norway in 2006. Telephone interviews were conducted with a random sample of non-respondents. Levels of missing data, factor structure, internal consistency and construct validity were assessed. Results: 7,906 (46.0%) parents or primary caregivers responded to the questionnaire. Low levels of missing data suggest that the PEQ-CAMHS is acceptable. The questionnaire includes three scales supported by the results of factor analysis: relationship with health personnel (8 items), information and participation (4 items), and outcome (3 items). Item-total correlations were all above 0.6 and Cronbach's alpha correlations ranged from 0.88-0.94. The results of comparisons of scale scores with several variables relating to global satisfaction, outcome, cooperation, information, involvement and waiting time support the construct validity of the instrument. Conclusions: The PEQ-CAMHS Outpatients questionnaire includes important aspects of outpatient CAMHS from the perspective of the parent. It has evidence for data quality, internal consistency and validity and is recommended in surveys of parent experiences of these services. Future research should assess test-retest reliability and further tests of construct validity that include clinical data are recommended. [ABSTRACT FROM AUTHOR]

Objectives. Concurrent evaluation of data quality, internal consistency, test–retest reliability and validity of two patient-reported outcome measures (PROMs) for measuring functional impairment in hand OA (HOA); the Australian/Canadian Osteoarthritis Hand Index (AUSCAN; 15 items) and the Functional Index of HOA (FIHOA; 10 items).Methods. Patients from an HOA cohort [n = 128, mean age 68.6 (s.d. 5.8) years, 91% women] completed PROMs and performance measures during routine follow-up. One week later, a subsample (n = 40) reporting no change on an HOA-specific transition question contributed with test–retest data.Results. Both instruments had satisfactory levels of data quality, internal consistency, test–retest reliability and construct validity. The AUSCAN performed slightly better than the FIHOA relating to levels of missing data (0 vs 5%), floor effects, principal component analysis loadings (0.62–0.83 vs 0.52–0.83), item-total correlation (0.77–0.91 vs 0.45–0.76) and Cronbach’s α (0.94–0.96 vs 0.90), respectively. AUSCAN items had slightly lower test–retest κ-values (0.29–0.77 vs FIHOA 0.41–0.77) and AUSCAN scales lower intra-class correlations (0.80–0.92 vs FIHOA 0.94). Correlations between the two instruments ranged from 0.58 to 0.88 for the AUSCAN scales of stiffness and physical function, respectively. AUSCAN physical function scale was generally slightly strongly correlated with the other PROMS and performance measures.Conclusion. The AUSCAN and the FIHOA are reliable and valid instruments suitable for measuring physical functioning in HOA. The FIHOA had higher test–retest reliability and is shorter, but the AUSCAN performed slightly better concerning data quality and construct validity. [ABSTRACT FROM PUBLISHER]

Background. The General Practitioner Experiences Questionnaire (GPEQ) measures community mental health centres from the perspective of GP but lacked accessibility scales and documentation of centre level reliability. [ABSTRACT FROM AUTHOR]

Objective. To develop and evaluate the Patient Experiences Questionnaire for Out-of-Hours Care (PEQ-OHC) in Norway. Design. Questionnaire development was based on a systematic literature review of existing questionnaires, interviews with users, and expert group consultation. Questionnaire testing followed a postal survey of users who had attended out-of-hours centres in the North, West, and South of Norway. Setting. Primary care out-of-hours services. Subjects. The questionnaire was pre-tested with 13 users and was then mailed to 542 users who had had telephone contact and/or had a consultation with one of three out-of-hours centres. Main outcome measures. Data quality, internal consistency, reliability, and construct validity. Results. The questionnaire was considered to have good content validity by the expert group. There were 225 (41.51%) respondents to the postal questionnaire. Levels of missing data at the item and scale level were acceptable. Principal component analysis supported the four scales of user experiences relating to telephone contact, doctor services, nursing services, and organization. Item-total correlations were all above 0.5 and Cronbach's alpha was above 0.80 for all scales. Statistically significant associations based on explicit hypotheses were evidence for the construct validity of the PEQ-OHC. Conclusion. The development of the PEQ-OHC followed a rigorous process based on a systematic review, interviews with users, and an expert group which lend the questionnaire content validity. The PEQ-OHC has evidence for data quality, internal consistency, reliability, and construct validity. [ABSTRACT FROM AUTHOR]

Background. Clinical course and outcome connected to rehabilitation after hip or knee arthroplasty have been studied extensively, but few studies have assessed the content of team rehabilitation care for these patients. Objective. The purpose of this study was to provide a thorough description of the structure, process, and outcome of team rehabilitation care for patients with hip or knee arthroplasty for osteoarthritis. Design. This was a multicenter, longitudinal observational study. Methods. Patients (N=183) from 6 rehabilitation centers in Norway who were undergoing inpatient rehabilitation following hip or knee arthroplasty were included in the study. Structure and process components were recorded by participants and health care professionals in a patient diary. Participants also completed questionnaires regarding their experiences during their rehabilitation stay and recorded data for outcome measures at admission, at discharge, and 6 months after discharge. The main outcome measures were pain intensity and physical function, as assessed with the physical function scale of the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36). Results. Data were complete for 172 participants (94%) at discharge and for 148 patients (81%) at the 6-month follow-up. Health care professionals, physical therapists, nurses, and physicians were most often involved in team care. Occupational therapists, social workers, and psychologists were seldom part of the rehabilitation team. Exercises provided by physical therapists were the most common treatment modality. Patient education, massage, and manual therapy also frequently were provided. The participants were very satisfied with their care and its organization, information, and communication and with the availability of health care professionals. They were moderately satisfied with the social environment of the rehabilitation setting. The participants had large improvements in the outcome measures during the rehabilitation stay and at the 6-month follow-up. Limitations. For typical physical therapy modalities such as exercises, electrotherapy, and acupuncture, there are limited descriptions and assessments of treatment doses. Conclusions. Current team rehabilitation care involves a traditional team with physical therapists, nurses, and physicians. Several types of treatment modalities are used, with greatest emphasis on physical training. This detailed description of current team rehabilitation practice might help clinicians and researchers in planning clinical trials within a rehabilitation setting, as well as in improving rehabilitation practice. [ABSTRACT FROM AUTHOR]

Background: The Psychiatric Out-Patient Experiences Questionnaire (POPEQ) is an 11-item core measure of psychiatric out-patients experiences of the perceived outcome of the treatment, the quality of interaction with the clinician, and the quality of information provision. The POPEQ was found to have evidence for reliability and validity following the application of classical test theory but has not previously been assessed by Rasch analysis. Methods: Two national postal surveys of psychiatric outpatients took place in Norway in 2004 and 2007. The performance of the POPEQ, including item functioning and differential item functioning, was assessed by Rasch analysis. Principal component analysis of item residuals was used to assess the presence of subdimensions. Results: 6,677 (43.3%) and 11,085 (35.2%) psychiatric out patients responded to the questionnaire in 2004 and 2007, respectively. All items in the scale were retained after the Rasch analysis. The resulting scale had reasonably good fit to the Rasch model. The items performed the same for the two survey years and there was no differential item functioning relating to patient characteristics. Principal component analysis of the residuals confirmed that the measure to a high degree is unidimensional. However, the data also reflects three potential subscales, each relating to one of the three included aspects of health care. Conclusions: The POPEQ had excellent psychometric properties and Rasch analysis further supported the construct validity of the scale by also identifying the three subdimensions originally included as components in the instrument development. The 11-item instrument is recommended in future research on psychiatric out-patient experiences. Future development may lead to the construction of more precise measures of the three subdomains that the POPEQ is based on. [ABSTRACT FROM AUTHOR]

Background: The Effective Musculoskeletal Consumer Scale (EC-17) is a self-administered questionnaire for evaluating self-management interventions that empower and educate people with rheumatic conditions. The aim of the study was to translate and evaluate the Norwegian version of EC-17 against the necessary criteria for a patient-reported outcome measure, including responsiveness to change. Methods: Data quality, reliability, validity and responsiveness were assessed in two groups. One group comprising 103 patients received a questionnaire before and at the end of a self-management programme. The second group comprising 96 patients' received the questionnaire two weeks before and on arrival of the program. Internal consistency and test-retest reliability were assessed. Construct validity was assessed through comparisons with the Brief Approach/Avoidance Coping Questionnaire, (BACQ), the Emotional Approach Coping Scale (EAC) and the General Health Questionnaire (GHQ-20). Responsiveness was assessed with the Standardised Response Mean (SRM). Results: Respondents included 66 (64%) and 52 (54%) patients from the first and second groups respectively. Levels of missing data were low for all items. There was good evidence for unidimensionality, item-total correlations ranged from 0.59 to 0.82 and Cronbach's Alpha and test-retest correlations were over 0.90. As hypothesised EC-17 scores had statistically significant low to moderate correlations with the BACQ, EAC and GHQ- 20 in the range 0.26 to 0.42. Following the self-management program, EC-17 scores showed a significant improvement with an SRM of 0.48. Conclusion: The Norwegian version of the EC-17 has evidence for data quality, internal consistency and test-retest reliability, construct validity and responsiveness to change. The EC-17 seems promising as an outcome measure for evaluating self-management interventions for people with rheumatic conditions, but further studies are needed. [ABSTRACT FROM AUTHOR]

Background. GPs and patients are frequently asked to evaluate mental health care, but studies including evaluations from both groups are rare. [ABSTRACT FROM PUBLISHER]

The data quality, reliability and validity of the Norwegian version of VEINES-QOL/Sym were assessed in 74 patients with deep vein thrombosis (DVT). This patient-reported questionnaire produces two scale scores of venous disease-specific quality of life and venous symptoms. Items had low levels of missing data. Item-total correlations ranged from 0.41 to 0.78 with the exception of 0.29 for the symptom item ‘night cramps’. Internal consistency was supported by Cronbach’s alpha of 0.88 and 0.94 for VEINES-Sym and VEINES-QOL, respectively. Test–retest reliability assessed for 40 patients gave intraclass correlation coefficients of 0.83 and 0.88 for VEINES-Sym and VEINES-QOL, respectively. Assessment of correlation between the two scales and other clinical measures supports the construct validity of the scales. The results indicate acceptable internal consistency, test–retest reliability and validity of the Norwegian version of the VEINES-QOL/Sym questionnaire in patients with DVT. The results follow those of previous studies, and support the use of VEINES-QOL/Sym in the evaluation of patient outcomes and burden of illness in clinical studies of venous thrombosis. [ABSTRACT FROM AUTHOR]

To survey continence specialists (CSs) about their assessment practice including their use of quality of life (QoL) information, perceived barriers, benefits and training needs. Cross-sectional national postal survey of 624 practicing CSs in the UK. The questionnaire included open and closed questions relating to assessment practice. Completed questionnaires were returned by 299 (49%) CSs. Although 80% routinely assessed QoL, fewer than 54% demonstrated awareness of published questionnaires. The majority used structured questions (41%) many of which were non-standardised single items (26%) or locally developed questionnaires (19%). Only 22% used standardised patient-completed questionnaires such as the King’s Health Questionnaire and the Incontinence Quality of Life questionnaire. Perceived assessment barriers included the availability of appropriate questionnaires, patient disability, limited guidance, resources and time. Of those routinely assessing QoL, 77% wanted more support; the most useful media cited being the internet, followed by professional guidance and training courses. Although QoL measurement is highly valued, there was wide variation in assessment practice with few adopting standardised approaches. Most CSs require greater guidance and support that takes account of their diverse needs. Familiar assessment barriers exist which the use of web-based information, in association with professional guidance might help overcome. Clear mechanisms are required to direct standardised and appropriate assessment practice. [ABSTRACT FROM AUTHOR]

The study compared patient experiences with psychiatric treatment provided by private practitioners and public outpatient clinics. Questionnaires were completed by 642 outpatients in private practice and 6,677 outpatients in public clinics. The questionnaire included a measure of patient experiences comprising six items: treatment outcome, enough time for contact and dialogue with clinician, clinicians’ understanding of patient's situation, suitability of therapy and treatment, clinician follow-up of planned actions, and influence on treatment. Patients in private practice had generally better experiences than patients in public outpatient treatment. The difference between private and public patients was largest for patients with poor self-evaluated mental health or those who had just one consultation in the previous three months. Private practitioners appear to have an important role in mental health services delivery, and patients have relatively good experiences with services. Further studies that assess the patient – clinician interaction in different mental health services may give further insights into potential service improvements. [ABSTRACT FROM AUTHOR]

To evaluate the measurement properties of the EuroQoL EQ-5D and two condition-specific patient-reported outcome measures—the Symptom Severity Index (SSI) and the Urinary Incontinence-Specific Quality of Life instrument (I-QoL)—in women with urinary incontinence. A questionnaire comprising all instruments was completed by women taking part in a clinical trial of physiotherapy for urinary incontinence. Follow-up questionnaires were at 6 weeks and 5 months. Data quality, internal consistency reliability, validity and responsiveness were assessed. One hundred and seventy-four patients taking part in the clinical trial completed the questionnaire. Instruments had low levels of missing data. The EQ-5D had a large ceiling effect and poor responsiveness. The SSI had poor validity and responsiveness. The I-QoL had levels of reliability that supported application in group assessment, and in some cases, individual assessment, and good evidence of validity. The I-QoL was the most responsive instrument at both 6 weeks and 5 months. The I-QoL was the best performing instrument and is recommended as a continence-specific measure of quality of life in a clinical trial setting. The SSI and EQ-5D are not recommended. Alternative generic instruments, which support economic evaluation, require further evaluation in trials of female urinary incontinence. [ABSTRACT FROM AUTHOR]

Low response rates are a common problem in surveys of family physicians leading to uncertainty about the validity of results. In this study, the authors examined the association between multiple reminders and nonresponse bias, survey estimates and costs in a survey of family physicians in Norway (N = 3,463). After three postal reminders and one telephone follow-up, the response rate was 65.9%. They analyzed differences in nine demographic and practice variables between respondents and nonrespondents, the effect of non-response bias on survey estimates, and the cost-effectiveness of each reminder. Statistically significant differences between respondents and nonrespondents were found for six variables. However, demographic and practice variables had little association with the main outcome variables, and the overall survey estimates changed little with additional reminders. In addition, the cost-effectiveness of the final reminders was poor. [ABSTRACT FROM AUTHOR]

Background: This article describes the development and validation of a self -reported questionnaire, the KQoL-26, that is based on the views of patients with a suspected ligamentous or meniscal injury of the knee that assesses the impact of their knee problem on the quality of their lives. Methods: Patient interviews and focus groups were used to derive questionnaire content. The instrument was assessed for data quality, reliability, validity, and responsiveness using data from a randomised trial and patient survey about general practitioners' use of Magnetic Resonance Imaging for patients with a suspected ligamentous or meniscal injury. Results: Interview and focus group data produced a 40-item questionnaire designed for self-completion. 559 trial patients and 323 survey patients responded to the questionnaire. Following principal components analysis and Rasch analysis, 26 items were found to contribute to three scales of knee-related quality of life: physical functioning, activity limitations, and emotional functioning. Item-total correlations ranged from 0.60-0.82. Cronbach's alpha and test retest reliability estimates were 0.91-0.94 and 0.80-0.93 respectively. Hypothesised correlations with the Lysholm Knee Scale, EQ-5D, SF-36 and knee symptom questions were evidence for construct validity. The instrument produced highly significant change scores for 65 trial patients indicating that their knee was a little or somewhat better at six months. The new instrument had higher effect sizes (range 0.86-1.13) and responsiveness statistics (range 1.50-2.13) than the EQ-5D and SF-36. Conclusion: The KQoL-26 has good evidence for internal reliability, test-retest reliability, validity and responsiveness, and is recommended for use in randomised trials and other evaluative studies of patients with a suspected ligamentous or meniscal injury. [ABSTRACT FROM AUTHOR]

Aims: This article describes the development of a questionnaire designed for comparisons of patient experiences of hospital care within the Nordic countries. The results of testing for data quality, reliability, and validity are presented following a Norwegian survey. Methods: Following a literature review and consultation within an expert group six items were developed measuring patient experiences together with two items assessing global satisfaction and perception of incorrect treatment. The questions were included in a questionnaire that was mailed to 500 patients randomly selected from patients receiving inpatient treatment at a large university hospital in Norway. Principal component analysis was used to assess dimensionality. Reliability was assessed by the internal consistency and test-retest methods. Construct validity was assessed by the scale's correlation with variables known to be related to patient experiences. Results: A total of 244 (48.8%) patients responded. Levels of missing data ranged from 0.4% to 2.5%. The six items in the questionnaire that measured important aspects of patient experiences with the services contributed to a single scale with item-total correlations in the range 0.59-0.71 and a Cronbach's alpha of 0.85. The test-retest intraclass correlation was 0.88. Conclusions: The NORPEQ is a brief measure of patient experiences that covers important aspects of the healthcare encounter. It shows good evidence of reliability and validity and is relatively easy to apply alongside existing national surveys. [ABSTRACT FROM AUTHOR]

Background: The measurement of patient experiences and satisfaction is recognized as an important component of health care evaluation, quality indicators, and performance. Aim: To identify factors of importance for perceived patient experiences among psychiatric outpatients. Methods: A validated questionnaire was administered as part of a postal survey of 15,422 adult outpatients attending psychiatric outpatient clinics across Norway. Results: 6,677 (43.3%) responded to the survey. Analyses identified significant differences in patients' experiences related to age, gender, education, native language and daily activities. Regression analysis explained 71% of the variance in patient experiences. The three most important predictors of better experiences accounting for 45% of this variation were whether patients could influence the assignment of their own therapist, politeness and respect from the clinical staff and health professionals' cooperation with the patient's family. Conclusions: Patient-centeredness and staff conduct were identified as the most important aspects of health care delivery that should be considered by outpatient clinics wishing to improve patients' experiences of care. Declaration of interest: None. [ABSTRACT FROM AUTHOR]

Aim: To describe the development and evaluation of a parent completed questionnaire to measure parent experiences of inpatient paediatric care, the parent experiences of paediatric care (PEPC).Methods: Literature review, parent interviews, pre-testing and a national survey of 6144 parents of children who were inpatients at one of the 20 paediatric departments within Norway in 2005.Results: Three thousand three hundred and eight (53.8%) parents responded to the questionnaire. Low levels of missing data suggest that the PEPC is acceptable. The questionnaire includes six scales as supported by the results of factor analysis: nursing services (seven items), doctor services (five items), organisation (four items), information--examinations and tests (two items), information--discharge (three items) and hospital facilities (four items). Cronbach's alpha and test-retest correlations ranged from 0.7 to 0.9. Comparisons of scale scores with several variables including overall satisfaction with care and pain control, supported validity.Conclusion: The PEPC questionnaire includes important aspects of hospital care from the perspective of the parent. It has good evidence for internal consistency, test-retest reliability and validity and is recommended in surveys of parent experiences of paediatric inpatient care. [ABSTRACT FROM AUTHOR]

Aims: To assess the association between patient experiences, aspects of healthcare delivery, and patient characteristics for adult somatic inpatients attending hospitals throughout Norway. Methods: The Patient Experiences Questionnaire (PEQ) was mailed to 26,938 patients attending inpatient clinics at 62 Norwegian hospitals during 2002 and 2003 within a six-week period. Reminders were mailed at four weeks. Scores for the PEQ were regressed on whether the patient felt that he/she had received incorrect treatment, had spent the night in a corridor bed, had been an emergency or routine admission, his/her number of previous admissions, hospital teaching status, hospital size and location, health status, and sociodemographic variables. Results: A total of 13,700 (50.9%) patients responded. Patients who felt that they had received incorrect treatment had significantly poorer scores for all 10 PEQ dimensions. Those spending the night in a corridor bed had significantly poorer scores for six dimensions. Emergency admissions and the previous number of inpatient stays were significantly associated with poorer experiences for 10 and 7 dimensions respectively. Hospital size and university status had negative relationships with scores for six and four dimensions respectively. Conclusions: Whether the patient felt that he/she had received the incorrect treatment had by far the strongest association with patient experiences. Future studies of patient experiences and satisfaction should include this variable. As found in previous research, patient experiences were significantly associated with age and health status. [ABSTRACT FROM AUTHOR]

The aim of this study was to develop and evaluate the Psychiatric Out-Patient Experiences Questionnaire (POPEQ). The instrument was developed following a literature review, patient interviews and pre-testing of questionnaire items. The POPEQ was administered as part of a postal survey of 15,422 adult outpatients attending Norwegian clinics; 6677 (43.3%) patients responded to the questionnaire. Items had low levels of missing data. Factor analysis showed that 11 widely applicable items contribute to a measure of overall experiences. Sub-dimensions include clinician interaction (six items) information (two items) and outcomes (three items). Item-total correlations ranged from 0.5 to 0.8. Cronbach's alpha and test–retest reliability estimates exceeded the criterion of 0.7; the majority were over 0.8 and total scores over 0.9. Construct validity was supported by the results of 128 tests. The POPEQ includes important aspects of patient experience for psychiatric outpatients and has excellent evidence for reliability and construct validity. The instrument is recommended for the measurement of psychiatric outpatient experiences. [ABSTRACT FROM AUTHOR]

To review evidence relating to the measurement properties of older people specific self-assessed, multi-dimensional measures of health status. Systematic literature searches to identify instruments. Pre-defined criteria relating to reliability, validity, responsiveness, precision and acceptability. A total of 46 articles relating to 18 instruments met the inclusion criteria. Most evidence was found for the OARS Multidimensional Functional Assessment Questionnaire (OMFAQ), CARE, Functional Assessment Inventory (FAI) and Quality of Life Profile – Seniors Version (QOLPSV). Most instruments have been evaluated in single studies. Four instruments have evidence of internal consistency and test–retest reliability – LEIPAD, Philadelphia Geriatrics Centre Multilevel Assessment Inventory, Perceived Well-being Scale, Wellness Index (WI). Two instruments lack evidence of reliability – Brief Screening Questionnaire, Geriatric Quality of Life Questionnaire (GQLQ). Older people contributed to the content of the GQLQ, QOLPSV and WI. Most instruments were assessed for validity through comparisons with other instruments, global judgements of health, or clinical and socio-demographic variables. Limited evidence of responsiveness was found for five instruments – GQLQ, OMFAQ, PGCMAI, QOLPSV, Self-Evaluation of Life Scale (SELF). Although most evidence was found for the OMFAQ this was largely for the ADL domain; evidence for reliability and responsiveness is limited. Limited evidence of reliability, validity and responsiveness was found for the PGCMAI, QOLPSV and SELF. The lack of evidence for measurement properties restricts instrument recommendation. Instrument content should be assessed for relevance before application and the concurrent evaluation of specific and widely used generic instruments is recommended. Several instruments, including the BSQ and EASY-Care, were developed recently and further evidence of instrument performance is required. [ABSTRACT FROM AUTHOR]

Studies the development of a condition-specific quality of life measure for patients with dentofacial deformity. Measurement of quality of life for purposes of health care evaluation; Evaluation of healthcare interventions.

The assessment of quality of life is becoming increasingly important in clinical research. Its importance in dentistry has been realised only relatively recently. Health-related quality of life is concerned with the aspects of quality of life that relate specifically to an individual's health. This may be measured using two groups of instruments: (i) generic measures, which provide a summary of health-related quality of life and sometimes generate a single index measure of health or (ii) condition-specific measures, which focus on a particular condition, disease, population or problem and are potentially more responsive to small, but clinically important, changes in health. Objectives: The aim of this study was to develop a condition-specific quality of life measure for those patients with severe dentofacial deformity who were requesting orthognathic treatment and to assess the reliability of this instrument. Method: Instrument content was derived through a literature review and interviews with clinicians and patients. The resulting instrument was tested for internal consistency and test-retest reliability. Results and conclusions: The instrument was found to divide into four clinically meaningful domains. Internal consistency and test-retest reliability were good. Patient acceptance of the questionnaire was also encouraging. [ABSTRACT FROM AUTHOR]

Evaluates the validity, reliability and acceptability of the short form 36 health survey questionnaire as a measure of patient outcome for patients in Great Britain. Potential of the SF 36 as a measure for patient outcome; Acceptability of the SF 36 to patients; Study on the sensitivity of SF 36 to changes in health status over time.

Objectives To assess the growth of quality of life measures and to examine the availability of measures across specialties. Design Systematic searches of electronic databases to identify developmental and evaluative work relating to health outcome measures assessed by patients. Main outcome measures Types of measures: disease or population specific, dimension specific, generic, individualised, and utility. Specialties in which measures have been developed and evaluated. Results 3921 reports that described the development and evaluation of patient assessed measures met the inclusion criteria. Of those that were classifiable, 1819 (46%) were disease or population specific, 865 (22%) were generic, 690 (18%) were dimension specific, 409 (10%) were utility, and 62 (1%) were individualised measures. During 1990-9 the number of new reports of development and evaluation rose from 144 to 650 per year. Reports of disease specific measures rose exponentially. Over 30% of evaluations were in cancer, rheumatology and musculoskeletal disorders, and older people's health. The generic measures--SF-36, sickness impact profile, and Nottingham health profile--accounted for 612 (16%) reports. Conclusions In some specialties there are numerous measures of quality of life and little standardisation. Primary research through the concurrent evaluation of measures and secondary research through structured reviews of measures are prerequisites for standardisation. Recommendations for the selection of patient assessed measures of health outcome are needed. [ABSTRACT FROM AUTHOR]

Background: Several patient reported outcome measures (PROMs) are available for assessing the outcomes of ankle fracture but few have been compared for recommended measurement properties. This study compares the measurement properties of the Lower Extremity Function Scale (LEFS), Olerud Molander Ankle Score (OMAS) and Self-Reported Foot and Ankle Score (SEFAS) following ankle surgery.Methods: The retrospective cohort study included 959 patients aged 18 years and over who underwent surgical treatment (ORIF) for unstable and closed ankle fractures in SE Norway. The PROMs were included in a postal questionnaire sent to patients' homes in 2015, three years after surgery. Missing data, structural validity, internal consistency, test-retest reliability and validity were assessed.Results: Confirmatory factor analysis results showed model fit for the SEFAS and a bi-dimensional LEFS with scales of easy and difficult items. The OMAS performed less satisfactorily. Cronbach's alpha and test-retest correlations ranged from 0.82 to 0.96 and 0.91 to 0.93 respectively. The smallest detectable differences for group and individual comparisons were 14.1 to 20.6 and 0.93 to 1.55; SEFAS performed best. As hypothesised, instrument scores were highly correlated and with those for the EQ-5D and SF-36 physical functioning. Mean imputation where half or more items are completed increased usable scores by 1.4-15.7% without affecting measurement properties.Conclusions: The three instruments largely performed satisfactorily in relation to important measurement properties but the LEFS had evidence for two dimensions relating to easier and more difficult aspects of function. Mean imputation where half or more items are completed increased the number of usable responses for all three instruments. The three instruments represent different approaches to measuring outcomes and their content should be considered carefully when choosing between them. The SEFAS is designed for a range of foot disorders including ankle fractures and has the best measurement properties in this population. [ABSTRACT FROM AUTHOR]

The article discusses patient reported outcomes measures in clinical trials. Measures that are specific to a disease or population and those that can be applied across populations are discussed. The short form 36 item (SF-36) health survey questionnaire is described. The authors explain that the use of the SF-36 survey is not standardised. They support initiatives that will contribute to the standardised application of measures that include aspects of health and quality of life.

OBJECTIVES: Health-related quality of life (HRQoL) is an important outcome after surgical aortic valve replacement (SAVR). To improve interpretation of HRQoL, mean score change and change in terms of minimal important difference (MID) were assessed using validated instruments for measuring patient-reported outcomes in patients with severe aortic stenosis referred for possible SAVR. METHODS: Of the 442 included patients with severe aortic stenosis evaluated for possible SAVR, 351 were referred to SAVR (operated) and 91 to medical treatment (unoperated). At presurgical evaluation and 1 year postoperatively, HRQoL was assessed using SF-36v2 and EQ-5D. Results were compared with outcomes reported in unoperated patients. We explored the association of clinical factors and improvements corresponding to MID. RESULTS: Among the operated patients, statistically significant change was found for EQ-5D scores and SF-36 scale scores for physical functioning, role-physical, bodily pain, general health, vitality and physical summary score. The largest proportion of operated patients achieving change corresponding to at least MID was 61.5% for physical summary score. Change in unoperated patients also related largely to physical scales of the SF-36. However, smaller proportions of unoperated patients reported improvements, and larger proportions reported decline reaching MID. Baseline scores, but no clinical covariates, were consistently associated with improved HRQoL reaching MID across instruments for those referred to SAVR. CONCLUSIONS: This study found improvement in HRQoL 1 year after SAVR for patients with severe aortic stenosis. Results in unoperated patients suggest that HRQoL deteriorates 1 year after evaluation of possible SAVR. [ABSTRACT FROM AUTHOR]

Purpose: Surveys of patients' experiences typically show results that are indicative of positive experiences. Unbalanced response scales have reduced positive skew for responses to items within the Universal Patient Centeredness Questionnaire (UPC-Q). The objective of this study was to compare the unbalanced response scale with another unbalanced approach to scaling to assess whether the positive skew might be further reduced. Patients and methods: The UPC-Q was included in a patient experience survey conducted at the ward level at six hospitals in Norway in 2015. The postal survey included two reminders to nonrespondents. For patients in the first month of inclusion, UPC-Q items had standard scaling: poor, fairly good, good, very good, and excellent. For patients in the second month, the scaling was more positive: poor, good, very good, exceptionally good, and excellent. The effect of scaling on UPC-Q scores was tested with independent samples t-tests and multilevel linear regression analysis, the latter controlling for the hierarchical structure of data and known predictors of patient-reported experiences. Results: The response rate was 54.6% (n=4,970). Significantly lower scores were found for all items of the more positively worded scale: UPC-Q total score difference was 7.9 (P<0.001), on a scale from 0 to 100 where 100 is the best possible score. Differences between the four items of the UPC-Q ranged from 7.1 (P<0.001) to 10.4 (P<0.001). Multivariate multilevel regression analysis confirmed the difference between the response groups, after controlling for other background variables; UPC-Q total score difference estimate was 8.3 (P<0.001). Conclusion: The more positively worded scaling significantly lowered the mean scores, potentially increasing the sensitivity of the UPC-Q to identify differences over time and between providers. However, none of the groups exhibited large positive skew and ceiling effects, implying that such effects might not be a big measurement problem for either scaling format. We recommend using the standard scaling in surveys producing external indicators for inter-provider comparisons. The more positively worded scaling has greater relevance for local measurement work where the results of patient experience surveys have shown large positive skew, and intra-provider comparison is the primary goal. [ABSTRACT FROM AUTHOR]

Background: Illness perceptions have been found to change over time and following health care. Hence, addressing illness perceptions alongside existing health care interventions may be important for the sustainment of health gains following rehabilitation. The aim of this study was to measure the illness perceptions of patients receiving inpatient rheumatology rehabilitation and assess the association with aspects of health and outcomes at baseline, discharge and 12 months. Methods: Patients with a rehabilitation stay of one week or more at three institutions in Norway in 2009 were invited to participate in the study. At baseline, discharge and 12 months, patients completed The Rheumatic Disease Illness Perception Questionnaire (RD-IPQ) which includes aspects of illness perceptions important to patients with rheumatic diseases. Stepwise regression analysis was used to assess associations between RD-IPQ scores and different aspects of health at baseline and follow-up after controlling for other aspects of health and sociodemographic variables. Results: For the 134 patients included in the study, baseline RD-IPQ scores had a mean of 58.2 (SD 14.9) on a 0-100 scale, where 100 is the worst possible. Scores showed improvement after the rehabilitation stay which were maintained at 12 months. RD-IPQ scores were positively associated with health and outcomes. At baseline RD-IPQ scores were statistically significant in explaining variation in pain, physical function and SF-36 mental health scores. Baseline RD-IPQ scores were significant in explaining fatigue, pain, SF-36 role limitations and social function scores following rehabilitation and at 12 months. Conclusion: Illness perceptions as measured by the RD-IPQ were associated with health and outcomes as measured by rheumatology-specific and generic instruments. The consideration of illness perceptions as a component of rehabilitation may be important in achieving desired outcomes. [ABSTRACT FROM AUTHOR]

Background: User reported experiences and satisfaction are increasingly used as basis for quality indicators in the health sector. However, there is limited understanding of factors associated with user reported experiences and satisfaction with casualty clinics. Methods: A random sample of 542 patients that had contacted any of three casualty clinics from mid April to mid May 2008 was mailed a questionnaire. A reminder was sent to non-respondents after six weeks. Descriptive statistics for four user reported experiences scales and 20 single items are presented. Multivariate regression analysis was used to assess associations between background variables and user reported experiences, and between user reported experiences and user satisfaction. Results: 225 (41.5%) patients, carers and guardians returned a completed questionnaire. Users reported most positive experiences with the doctor services and the nursing services at the casualty clinics; on a scale from 0 to 100, where 100 is the best possible experience the doctor scale was 82 and the nursing scale 81. Users reported least positive experiences with the organization of the casualty clinic, with a scale score of 65. Self perceived health was associated with user satisfaction, while self perceived health and age were associated with user reported experiences with organization of the clinics. A range of user reported experience domains were related to user satisfaction, after controlling for socio-demographic variables, including experiences with doctor services at the clinics, organization of the clinics, information and self perceived incorrect treatment. Conclusions: Users report positive experiences with the three casualty clinics, with organization as the aspect with largest improvement potential. The importance of age and health status for users' experiences and satisfaction with casualty clinics was shown, but a range of user reported experiences with the clinics were the most important predictors for user satisfaction. [ABSTRACT FROM AUTHOR]

Background: There is variation in the number of response alternatives used within health-related questionnaires. This study compared a four-and a five-point scale version of the Norwegian Function Assessment Scale (NFAS) by evaluating data quality, internal consistency and validity. Methods: All inhabitants in seven birth cohorts in the Ullensaker municipality of Norway were approached by means of a postal questionnaire. The NFAS was included as part of The Ullensaker Study 2004. The instrument comprises 39 items derived from the activities/participation component in the International Classification for Functioning, Disabilities and Health (ICF). The sample was computer-randomised to either the four-point or the five-point scale version. Results: Both versions of the NFAS had acceptable response rates and good data quality and internal consistency. The five-point scale version had better data quality in terms of missing data, end effects at the item and scale level, as well as higher levels of internal consistency. Construct validity was acceptable for both versions, demonstrated by correlations with instruments assessing similar aspects of health and comparisons with groups of individuals known to differ in their functioning according to existing evidence. Conclusion: Data quality, internal consistency and discriminative validity suggest that the five-point scale version should be used in future applications. [ABSTRACT FROM AUTHOR]

The structural relations between patient experiences with information provided by hospital staff, coping behaviour and changes in self-rated health were studied in a cohort of people with chronic illness (n=556) over a period of 2 years. A structural equation approach was applied to model cross-sectional and longitudinal effects. Positive experiences with information were cross-sectionally but not longitudinally associated with improved self-rated health. Patient experiences with information are not related to avoidance coping, but positive experiences contribute to more frequent use of supportant coping. The findings in the present study indicate that measures of patient experiences with information are not merely a reflection of patients' health or coping behaviour. More theoretical work is required to describe the relationships between different patient reported outcomes. The insight into mechanisms underlying changes in physical and mental health in chronic illness could be further improved by evaluating the effects of specific educational and psychosocial interventions in a longitudinal design. [ABSTRACT FROM AUTHOR]

Objective. In rehabilitation, treatment is individually tailored to each patient's goals. Individualized instruments allow patients to choose domains that they consider important, which may make them particularly appropriate as evaluative tools in this setting. We aimed to evaluate the psychometric properties of the Norwegian version of the Patient Generated Index (PGI) in patients with rheumatic diseases participating in inpatient rehabilitation or self-management programmes. Methods. Patients completed the PGI together with other outcome measures at arrival and 5 and 52 weeks after arrival. The PGI was assessed for data quality by completion rates, reliability by the intraclass correlation coefficient (ICC), agreement by standard error of measurement (SEM) and smallest detectable change (SDC). Construct validity was assessed by testing a priori hypotheses regarding correlation between PGI scores and other outcome measures. Responsiveness was assessed by an a priori hypothesis regarding the correlation of different change scores and standardized response means (SRMs). Results. A total of 145 patients participated and 118 (81%) completed the PGI correctly. The ICC was 0.87, SEM 7.25 and SDC 20.10. Ninety-three per cent of the hypotheses of correlation were confirmed in tests for construct validity. Responsiveness was confirmed in 53% and 71% of hypotheses tested at 5 and 52 weeks. SRMs were 0.2 and 0.4, respectively. Conclusion. The results support the validity, reliability and responsiveness of the Norwegian version of the PGI in patients with rheumatic diseases and its application as an outcome measure in rehabilitation or self-management programmes. Further research is needed to improve completion rates for the PGI. [ABSTRACT FROM AUTHOR]

Objective. To determine the responsiveness and minimal important change (MIC) of Evaluation of Ankylosing Spondylitis Quality of Life (EASi-QoL), a reliable and valid patient-reported measure of AS-specific quality of life with four domains: physical function (PF), disease activity (DA), emotional well-being (EWB) and social participation (SP).Methods. A total of 1000 UK AS patients received a postal questionnaire including EASi-QoL. Comparative responsiveness of EASi-QoL was assessed against measures reflecting similar health domains in patients self-reporting an improvement in their AS-specific health at 6 months on a health transition question. Effect size (ES) statistics were calculated for all measures and MIC was determined for EASi-QoL. Comparative responsiveness was determined in a randomized trial of AS patients receiving etanercept (ETN) 50 mg weekly or SSZ 3 g daily.Results. Of 470 patients, 80 responding at 6 months reported health improvement. Responsiveness (ES) for EASi-QoL domains was superior or similar to comparator measures: DA 0.72 vs BASDAI 0.58; SP 0.52 vs SF-36 social functioning 0.29; PF 0.32 vs BASFI 0.28 and SF-36 PF 0.24; EWB 0.40 vs HADS-anxiety 0.13, HADS-depression 0.21 and SF-36 mental health 0.35. ES for the ASQoL was 0.40. Superior ES was seen in those improving somewhat. In the randomized trial, all EASi-QoL domains had superior responsiveness to comparator measures following ETN treatment. Following SSZ treatment, all EASi-QoL domains were highly responsive, but BASDAI and BASFI was more responsive than EASi-QoL(DA) and (PF), respectively.Conclusion. In patients reporting improvement during routine clinical practice or following treatment with ETN or SSZ, EASi-QoL domains have superior or comparable responsiveness than comparable measures. [ABSTRACT FROM PUBLISHER]