Dataset Information

Assessing Four Quality Indicators for Multiple Sclerosis Management Through Patient-Reported Data.

ABSTRACT:

Background

Although hundreds of quality indicators (QIs) have been developed for various chronic conditions, QIs specific to multiple sclerosis (MS) care have only recently been developed. We sought to examine the extent to which the self-reported care of individuals with MS meets four recently developed MS QIs related to treatment of depression, spasticity, and fatigue and timely initiation of disease-modifying agents (DMAs) for relapsing MS.

Methods

Using the Sonya Slifka Study data, we examined the proportion of the MS population meeting four QIs (based on patient-reported data) in a sample of individuals with MS in 2007-2009. For the three diagnoses, meeting the QI was defined as receiving appropriate medication or seeing a provider for treatment of the diagnosis; for timely initiation, it was defined as receiving a DMA within 3 months of a relapsing MS diagnosis. We also examined differences in characteristics between respondents who met the QI versus those who did not.

Results

Approximately two-thirds of people with MS in this sample, per the predefined criteria, met the QIs for treatment of depression, management of spasticity, and DMA initiation within 3 months of a relapsing diagnosis, and approximately one-fifth met the QI for management of fatigue. There were some significant differences in characteristics between respondents who met the QIs and those who did not.

Conclusions

This study examined a subset of MS QIs based on patient-reported data. Additional data sources are needed to fully assess compliance with MS QIs.

SUBMITTER: Shoemaker SJ

PROVIDER: S-EPMC4984792 | biostudies-literature | 2016 Jul-Aug

REPOSITORIES: biostudies-literature

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Publications

Assessing Four Quality Indicators for Multiple Sclerosis Management Through Patient-Reported Data.

Shoemaker Sarah J SJ Pozniak Alyssa A Hadden Louise L

International journal of MS care 20160701 4

<h4>Background</h4>Although hundreds of quality indicators (QIs) have been developed for various chronic conditions, QIs specific to multiple sclerosis (MS) care have only recently been developed. We sought to examine the extent to which the self-reported care of individuals with MS meets four recently developed MS QIs related to treatment of depression, spasticity, and fatigue and timely initiation of disease-modifying agents (DMAs) for relapsing MS.<h4>Methods</h4>Using the Sonya Slifka Study ...[more]

PMID: 27551245

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Project description:BackgroundStarting in 2005, Germany's health law required hospital quality reports to be published every two years by all acute care hospitals. The reports were intended to help patients and physicians make informed choices of hospitals. However, while establishing the quality indicators that form the content of the reports, the information needs of the target groups were not explicitly taken into account. Therefore, the aim of our study was to determine patient and physician opinion of the relevance of the reported quality indicators for choosing or referring to a hospital.MethodsConvenience samples of 50 patients and 50 physicians were asked to rate the understandability (patients), suitability (physicians) and relevance (both groups) of a set of 29 quality indicators. The set was drawn from the reports (24 indicators) and supplemented by five indicators commonly used in hospital quality reports. We analysed the differences in patient and physician ratings of relevance of all indicators by applying descriptive statistics, t-tests and Wilcoxon tests.ResultsOnly three indicators were considered not understandable by the interviewed patients and unsuitable by the interviewed physicians. The patients rated 19 indicators as highly or very relevant, whereas the physicians chose 15 indicators. The most relevant indicator for the patients was "qualification of doctors", and for the physicians "volume of specified surgical procedures". Patient and physician rankings of individual indicators differed for 25 indicators. However, three groups of indicators could be differentiated, in which the relevance ratings of patients and physicians differed only within the groups. Four of the five indicators that were added to the existing set of reported indicators ranked in the first or second group ("kindness of staff", "patient satisfaction", "recommendation", and "distance to place of living").ConclusionMost of the content of Germany's hospital quality reports seems to be useful for patients and physicians and influence their choice of hospitals. However, the target groups revealed that approximately one third of the indicators (mostly hospital structural characteristics), were not useful and hence could have been omitted from the reports. To enhance the usefulness of the reports, indicators on patient experiences should be added.

Project description:Abstract Registries have the potential to tackle some of the current limitations in determining the long-term impact of multiple sclerosis. Online assessments using patient-reported outcomes can streamline follow-up enabling large-scale, long-term, cost-effective, home-based, and patient-focused data collection. However, registry data are sparsely sampled and the sensitivity of patient-reported outcomes relative to clinician-reported scales is unknown, making it hard to fully leverage their unique scope and scale to derive insights. This retrospective and prospective cohort study over 11 years involved 15 976 patients with multiple sclerosis from the United Kingdom Multiples Sclerosis Register. Primary outcomes were changes in two patient-reported outcomes: Multiple Sclerosis Impact Scale motor component, and Multiple Sclerosis Walking Scale. First, we investigated their validity in measuring the impact of physical disability in multiple sclerosis, by looking at their sensitivity to disease subtype and duration. We grouped the available records (91 351 for Multiple Sclerosis Impact Scale motor and 68 092 for Multiple Sclerosis Walking Scale) by these two factors, and statistically compared the resulting groups using a novel approach based on Monte Carlo permutation analysis that was designed to cope with the intrinsic sparsity of registry data. Next, we used the patient-reported outcomes to draw novel insights into the developmental time course of subtypes; in particular, the period preceding the transition from relapsing to progressive forms. We report a robust main effect of disease subtype on the patient-reported outcomes and interactions of disease subtype with duration (all P < 0.0001). Specifically, patient-reported outcomes worsen with disease duration for all subtypes (all P < 0.0001) apart from benign multiple sclerosis (Multiple Sclerosis Impact Scale motor: P = 0.796; Multiple Sclerosis Walking Scale: P = 0.983). Furthermore, the patient-reported outcomes of each subtype are statistically different from those of the other subtypes at all time bins (Multiple Sclerosis Impact Scale motor: all P < 0.05; Multiple Sclerosis Walking Scale: all P < 0.01) except when comparing relapsing-remitting multiple sclerosis with benign multiple sclerosis and primary progressive multiple sclerosis with secondary progressive multiple sclerosis. Notably, there were statistically significant differences between relapsing-remitting and progressive subtypes at disease onset. Critically, the patient-reported outcomes are sensitive to future transitions to progressive subtypes, with individuals who transition presenting with higher patient-reported outcomes in their relapsing-remitting phase compared to individuals who don’t transition since onset (all P < 0.0001). Patient-reported outcomes capture different patterns of physical worsening over disease length and across subtypes; therefore, they are a valid tool to measure the physical impact of multiple sclerosis over the long-term and cost-effectively. Furthermore, more advanced physical disability manifests years before clinical detection of progressive subtypes, adding evidence to the presence of a multiple sclerosis prodrome. Lerede et al. found patient-reported outcomes to be a useful tool for tracking multiple sclerosis progression across subtypes and identifying early disability differences. They used permutation-based methods to analyse patient registry data, demonstrating the potential of online monitoring technologies to estimate multiple sclerosis progression risk early and support clinical decision-making. Graphical Abstract Graphical abstract

Dataset Information

Assessing Four Quality Indicators for Multiple Sclerosis Management Through Patient-Reported Data.

Background

Methods

Results

Conclusions

Publications

Assessing Four Quality Indicators for Multiple Sclerosis Management Through Patient-Reported Data.

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