Chronic spontaneous urticaria (CSU) is a complex skin disease characterized by the spontaneous appearance of wheals, angioedema, or both, for more than 6 weeks. Many patients experience a ...relapsing–remitting disease course for years. Owing to the unpredictability of wheal recurrence and the severity of pruritis, patients suffer considerable impairment in their quality of life. Physicians face multiple challenges, not least of which is a lack of clear guidance on what constitutes “treatment success”. There is a lack of awareness of which measures should be used to best assess the various aspects of CSU, including disease activity, disease control, and quality of life—which themselves each comprise multiple components—and how to apply the results of each score to treatment decision-making. Although the overarching aim of treatment is for patients to be completely free of signs and symptoms of CSU, a more realistic definition of “treatment success” is needed to guide ongoing, long-term disease management for each individual patient. In this review, we consider what lessons can be learned from the current evidence base to provide further direction toward a universal definition of “treatment success”.
Research on performance measurement by nonprofit organizations increasingly focuses on the use of outcome measurement (OM) to assess organizational effectiveness. This article applies a strategic ...choice framework to analyze how nonprofit managers’ evaluation of the importance of organizational stakeholders is associated with patterns of OM. The article introduces a multidimensional measure of nonprofits’ implementation of OM that incorporates its extent of program use, as well as whether resources are specifically allocated for this evaluative practice. This multidimensional measure is examined using data from a new survey of service providing nonprofits in the city of Boston. Our multivariate analysis investigates how three sets of influences—resource providers, networks, and internal stakeholders—impact patterns of OM. The findings indicate that the factors driving program use (internal stakeholders) are distinct from those that impact resource allocation (resource providers).
ObjectivesTo translate and adapt the Western Ontario Shoulder Instability (WOSI) questionnaire into Danish and, to evaluate measurement properties of an electronic Danish WOSI version.MethodsThe ...Swedish WOSI version was used for translation and adaptation into Danish followed by examination of test-retest reproducibility (14-day interval) besides concurrent and construct validity. Concurrent validity was examined by comparing WOSI in paper version with an electronic version, whereas construct validity was examined by comparing WOSI with Numeric Pain Rating Scale (NPRS) and the Oxford Shoulder Score (OSS). Reproducibility was evaluated with Intraclass correlations (ICC), Standard Error of Measurement (SEM), minimal detectable change (MDC) and limits of agreement (LOA). Validity was evaluated with Pearson’s (r) and Concordance Correlation Coefficients (CCC).Results41 subjects (median age 34, range 18–57) were included in the analysis of reproducibility. An ICC of 0.97 (95% CI 0.95 to 0.99) for the total WOSI score was found. SEM was 100.1, resulting in an MDC of 277.5 and LOAs within the range of -246.4 and 308.6. 25 subjects (median age 34, range 18–72) were included in the analysis of concurrent validity obtaining a CCC of 0.96 (95% CI 0.91 to 0.98). Construct validity was investigated in 62 subjects (median age 31, range 18–72) obtaining correlations of 0.83 (95% CI 0.68 to 0.97) (NPRS) and 0.79 (95% CI 0.62 to 0.94) (OSS).ConclusionsAn electronic Danish version of WOSI presented excellent test-retest reproducibility and acceptable measurement errors. Also, concurrent validity between paper and electronic version was highly satisfactory as was the construct validity. Surprisingly, though, the NPRS correlated more with WOSI than OSS.
Background
The Timed Up and Go (TUG) test is a reliable tool for evaluating objective functional impairment (OFI) in patients with degenerative disc disease before a surgical intervention. The aim of ...this study is to assess the validity of the TUG test to measure change in function postoperatively.
Methods
In a prospective two-center study, OFI was assessed by the TUG test in patients scheduled for lumbar spine surgery, as well as 3 days (D3) and 6 weeks (W6) postoperatively. At each time point, the TUG test results were correlated with established subjective measures of pain intensity (visual analogue scale (VAS) for back and leg pain), functional impairment (Oswestry Disability Index (ODI)) and health-related quality of life (HRQoL; Short Form-12 (SF12)).
Results
The patient cohort comprised 136 patients with a mean age of 57.7 years; 76 were males, 54 had a microdiscectomy for lumbar disc herniation, 58 a decompression for a lumbar spinal stenosis, 24 had a surgical fusion procedure. The mean OFI t-score was 125.1 before surgery, and as patients improved on the subjective measures in the postoperative interval, the OFI t-score likewise decreased to 118.8 (D3) and 103.4 (W6). The Pearson correlation coefficient (PCC) between the OFI t-score and VAS leg pain was 0.187 preoperatively (
p
= 0.029) and 0.252 at W6 (
p
= 0.003). The PCC between OFI t-score and the ODI was 0.324 preoperatively (
p
< 0.001) and 0.413 at W6 (
p
< 0.001). The PCC between OFI t-score and physical HRQoL (SF12) was −0.091 preoperatively (
p
= 0.293) and −0.330 at W6 (
p
< 0.001).
Conclusions
The TUG test is sensitive to change, and reflects the postoperative functional outcome even more exact than preoperatively, as indicated by better correlation coefficients of the OFI t-score with subjective measures of pain intensity, functional impairment and HRQoL.
Background:
Over the last decades, patient-reported outcome measures (PROM) have been developed for a better understanding of patient needs. The Integrated Palliative Care Outcome Scale (IPOS) is an ...internationally recommended PROM in palliative care. The validated electronic version of IPOS (eIPOS) was implemented in four German specialist palliative home care (SPHC) teams for use in everyday clinical practice. Patients reported symptoms and concerns via eIPOS, which were transmitted directly to the electronic patient record of the respective SPHC team.
Objectives:
The aim of the study was to describe and explore the health care professionals’ (HCPs’) experiences regarding acceptance and use of eIPOS in clinical practice in SPHC.
Design:
The mixed-methods sequential explanatory design comprised an anonymized quantitative online survey followed by qualitative focus groups.
Methods:
The online survey asked in both closed and open questions for HCP’s experience with eIPOS. Ambiguous results from the survey were discussed in two focus groups. Survey data were analysed with descriptive and univariable statistics, and the framework approach was used for qualitative data. In a further step, we conducted integrated analysis of quantitative and qualitative results using joint displays.
Results:
All HCPs of the four SPHC teams (n = 52) were invited to participate. HCPs participating in the survey (n = 32) and the focus groups (n = 7) saw potentials for implementing ePROM in palliative home care – as far as it is technically easy to handle and can be easily integrated into clinical practice.
Conclusion:
Successful use of ePROMs is affected by the possibility of easy integration into the teams’ different structures and processes and the HCPs’ perceptions of potentials regarding ePROM use in SPHC.
Registration
The study is registered on clinicaltrials.org (NCT03879668).
Plain Language Summary
The use of electronic patient-reported outcome measures in specialist palliative home care: what do professionals think about it? A mixed-methods study
Patient-reported outcome measures (PROMs) are short questionnaires developed to assess a patient’s health status at a particular point in time. The Integrated Palliative Care Outcome Scale (IPOS) is such a questionnaire, and eIPOS is an electronic version of IPOS. IPOS asks about patients’ symptoms and problems when they suffer from advanced diseases. We conducted this study to understand what health care professionals (HCPs) think about electronic PROMs (ePROMs) in palliative home care. We first asked the HCPs to answer questions in an online survey. Then, HCPs discussed the use of eIPOS in small discussion groups. This study design is called ‘Mixed-Methods sequential design’. We found that all HCPs used the information they received through eIPOS – some frequently and some less often. Many HCPs see potential in using ePROMs to support care. For example, because ePROMs help them to understand patients’ symptoms and problems better. However, they also pointed out that eIPOS needs technical improvement. Also, the procedures of eIPOS need to fit into the work routine of the palliative care team. The findings demonstrate the perspectives of HCPs on ePROM. These are valuable to understand how ePROM can be implemented in palliative home care. We can also learn about how to implement other digital tools in other settings of palliative care.
Background:
Surveying volunteer members of a multiple sclerosis registry is a very cost-effective way of assessing the impact of the disease on life outcomes. However, whether the data from such a ...study can be generalised to the whole population of persons living with MS in a country or region is unclear.
Methods:
Here we compare the demographic and disease characteristics of participants in one such study, the Australian Multiple Sclerosis Longitudinal Study (AMSLS), with two well-characterised MS prevalence studies with near-complete ascertainment of MS in their study regions.
Results:
Although some differences were found, these largely represented the effects of geography (sex ratios) and local factors (national immunomodulatory therapy prescribing requirements), and the cohorts were otherwise comparable. Overall, despite comprising only 12–16% of MS cases in Australia, the AMSLS is highly representative of the MS population.
Conclusions:
Therefore with some minor caveats, the AMSLS data can be generalised to the whole Australasian MS population. Volunteer disease registries such as this can be highly representative and provide an excellent convenience sample when studying rare conditions such as MS.
In mental health, outcomes are currently measured by changes of individual scores. However, such an analysis on individual scores does not take into account the interaction between symptoms, which ...could yield crucial information while investigating outcomes. Network analysis techniques can be used to routinely study these systems of interacting symptoms. The present study aimed at comparing outcomes using individual scores vs. symptom networks, after a 1 year intervention at a local community mental health centre.
We used the Health of the Nation Outcomes Scales, which defines a set of 12 scales investigating mental health and social functioning. We first assessed how individual scores varied from baseline to end point and which items were associated to treatment response. Second, using network analysis techniques, we measured the overall connectivity of the networks and determined the most important symptoms.
The individual scores analysis revealed a significant improvement amongst most scales. No specific factors were related to treatment response at end point. At end point, network analysis revealed a very densely connected network while agitation and substance use were the most connected symptoms.
Individual scores and symptom network analysis resulted in very different outcomes, with network analysis toning down positive results gained from individual scores analysis. The strong connectivity of patients' network at end point may reflect their increased complexity. Allocating more resources to interventions tailored to symptoms that are the most connected would decrease network connectivity and improve patients' prognosis. When investigating outcomes, network analysis could give insights complementary to standard analysis on individual scores.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Progress monitoring data are central to making informed decisions on intervention intensification for struggling learners. The general outcome measure (GOM) of curriculum-based measurement of oral ...reading fluency (CBM-R) has been found to correlate with high-stakes assessment; however, data are highly variable, resulting in decisions that must be made 15 weeks after implementation of intervention. Recent researchers have recommended the use of both GOM and specific subskill mastery measurement (SSMM) to overcome the challenges presented with the use of GOM alone, but research on the efficacy of this approach is limited. Using Bayesian and ordinary least squares regression, we compared the GOM of CBM-R with SSMM slopes for words read correctly per minute (wcpm) per week at 5, 7, and 12 weeks, and explored the relation of the respective slopes with subsequent standardized assessment tools for struggling upper elementary students receiving word reading intervention. We found that the SSMM had a similar slope to that noted in prior research (i.e., β = 1.46 wcpm per week). This slope was significant and related to future standardized assessment outcomes across the various time points. The slope for CBM-R was not significant or related to future assessment outcomes. Implications for research and practice are discussed.
Background
Prior studies suggest comparable effectiveness of dimethyl fumarate (DMF) and fingolimod (FTY) in multiple sclerosis (MS) using relapse, Expanded Disability Status Scale (EDSS), and ...magnetic resonance imaging (MRI) lesion metrics.
Objective
Compare the real-world effectiveness of DMF versus FTY using quantitative, validated neuroperformance tests, MRI, and serum neurofilament light chain (sNfL) outcomes while controlling for between-group differences.
Methods
Patients were eligible if on DMF or FTY when first enrolled in the MS Partners Advancing Technology and Health Solutions (MS PATHS) network and had ≥1-year follow-up in MS PATHS. Sensitivity analysis included a subgroup who started DMF/FTY ≤2 years from enrolment. After propensity score weighting, differences in means and in mean 1-year change of neuroperformance and MRI outcomes were compared. sNfL levels were assessed. This was a non-randomized comparison.
Results
In the overall cohort, no significant differences were observed between DMF (n = 702) and FTY (n = 600) in neuroperformance or MRI outcomes including brain volume loss; mean time (SD) since treatment initiation was 1.98 (0.68) years for DMF and 2.02 (0.75) years for FTY. A sensitivity analysis controlling for DMF and FTY treatment duration yielded similar results.
Conclusion
In this study, DMF and FTY demonstrated similar effects on physical and cognitive neuroperformance and MRI outcomes. Direct comparisons to other fumarates and S1P receptor modulators were not conducted.
•UPDRS II is a recommended disability outcome measure in Parkinson’s disease.•A content review shows only about half of UPDRS II items represent disability.•Traditional psychometric analyses support ...the validity of the UPDRS II.•Rasch measurement theory reveals fundamental measurement problems with the UPDRS II.•Rasch measurement theory provides a basis for improved outcome measurement.
Parkinson’s disease (PD) is a progressive neurodegenerative disorder associated with increasing disability and limitations in performance of activities of daily living (ADL) despite availability of effective symptomatic therapy. Following an overview of classical test theory (CTT) and Rasch measurement theory (RMT), the case of a clinical PD trial aiming to demonstrate ADL improvements by using the ADL section (part II) of the Unified PD Rating Scale (UPDRS) to measure ADL outcomes is considered and central questions related to its validity and interpretation are addressed. It is found that while CTT did not detect any issues, RMT in combination with conceptual considerations seriously challenged the role of the UPDRS II as an ADL outcome measure. Results are discussed from historical, methodological and clinical perspectives.
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