Adding a subjective dimension to an ICF-based disability measure for people with multiple sclerosis: development and use of a measure for perception of disabilities

OBJECTIVE: The subjective dimension of disability, the perception of disability, is a dimension missing from the International Classification of Functioning, Disability and Health (ICF), and from health-related quality of life (HRQOL) instruments. However, it is a highly relevant dimension for clinical practice as perceived disability may identify care needs. We therefore developed a measure for this subjective dimension of disability in multiple sclerosis (MS) and examined the contribution of this dimension to QOL. METHOD: A measure named the Multiple Sclerosis Impact Profile-Disability Perception (MSIP-DP) was developed to reflect a person's perception of disabilities reported using the original MSIP-disability (MSIP-D) items. MS patients (n=530) completed both MSIP sections, the medical outcome study short form questionnaire (SF-36), the World Health Organisation Quality Of Life-BREF (WHOQOL-BREF) and questions concerning disease severity. The contribution of disability perception (DP) to QOL in MS was estimated using hierarchical multiple regression analyses after controlling for MS severity. RESULTS: Confirmative factor analysis confirmed the hypothesised disability perception domains that correspond with the related disability domains in the MSIP. DP scales yielded sufficient reliability. DP explained a unique and substantial part of the variance in QOL, particularly the perception of impairments in mental functions. DISCUSSION: Results indicated that the subjective dimension of functioning and health operationalised in the MSIP-DP is a relevant concept in explaining QOL in MS. In clinical practice psychological interventions addressing a patient's perception of disability, particularly of impairments in mental functioning, may contribute to QOL

Developing Student, Family, and School Constructs From NLTS2 Data

The purpose of this study was to use data from the National Longitudinal Transition Study–2 (NLTS2) to (a) conceptually identify and empirically establish student, family, and school constructs; (b) explore the degree to which the constructs can be measured equivalently across disability groups; and (c) examine latent differences (means, variances, and correlations) in the constructs across disability groups. Conceptual analysis of NLTS2 individual survey items yielded 21 student, family, and school constructs, and 16 were empirically supported. Partial strong metric invariance was established across disability groups, and in the latent space, a complex pattern of mean and variance differences across disability groups was found. Disability group moderated the correlational relationships between multiple predictor constructs, suggesting the key role of disability-related characteristics in understanding the experiences of youth with disabilities. Implications for future research and practice are discussed

On making disability in rural places more visible: challenges and opportunities [Introduction to a special issue]

This essay prefaces a special issue of the Journal of Rural Studies (JRS) concerned with a sub-field of inquiry that might be termed the rural geography of disability, addressing multiple dimensions of disability, physical and mental, associated with life in rural localities (as conventionally identified). Drawing on three vignettes where rurality and disability co-mingle, the authors explore both bad and good rurals with respect to disability: meaning properties of rural areas that can generate, exacerbate or stigmatise disability, on the one hand, and qualities of rural environments that may prevent, alleviate or mollify disability, on the other. Through a brief review of papers in JRS where disability has made an appearance, together with references across to relevant studies elsewhere, this essay lays the groundwork for a rural geography of disability as well as serving to introduce the papers that follow in the special issue

Using normalisation process theory to understand barriers and facilitators to implementing mindfulness-based stress reduction for people with multiple sclerosis

Objectives: To study barriers and facilitators to implementation of mindfulness-based stress reduction for people with multiple sclerosis. Methods: Qualitative interviews were used to explore barriers and facilitators to implementation of mindfulness-based stress reduction, including 33 people with multiple sclerosis, 6 multiple sclerosis clinicians and 2 course instructors. Normalisation process theory provided the underpinning conceptual framework. Data were analysed deductively using normalisation process theory constructs (coherence, cognitive participation, collective action and reflexive monitoring). Results: Key barriers included mismatched stakeholder expectations, lack of knowledge about mindfulness-based stress reduction, high levels of comorbidity and disability and skepticism about embedding mindfulness-based stress reduction in routine multiple sclerosis care. Facilitators to implementation included introducing a pre-course orientation session; adaptations to mindfulness-based stress reduction to accommodate comorbidity and disability and participants suggested smaller, shorter classes, shortened practices, exclusion of mindful-walking and more time with peers. Post-mindfulness-based stress reduction booster sessions may be required, and objective and subjective reports of benefit would increase clinician confidence in mindfulness-based stress reduction. Discussion: Multiple sclerosis patients and clinicians know little about mindfulness-based stress reduction. Mismatched expectations are a barrier to participation, as is rigid application of mindfulness-based stress reduction in the context of disability. Course adaptations in response to patient needs would facilitate uptake and utilisation. Rendering access to mindfulness-based stress reduction rapid and flexible could facilitate implementation. Embedded outcome assessment is desirable

Functioning and disability in multiple sclerosis from the patient perspective

Multiple sclerosis (MS) has a great impact on functioning and disability. The perspective of those who experience the health problem has to be taken into account to obtain an in-depth understanding of functioning and disability. The objective was to describe the areas of functioning and disability and relevant contextual factors in MS from the patient perspective. A qualitative study using focus group methodology was performed. The sample size was determined by saturation. The focus groups were digitally recorded and transcribed verbatim. The meaning condensation procedure was used for data analysis. Identified concepts were linked to International Classification of Functioning, Disability and Health (ICF) categories according to established linking rules. Six focus groups with a total of 27 participants were performed. In total, 1327 concepts were identified and linked to 106 ICF categories of the ICF components Body Functions, Activities and Participation and Environmental Factors. This qualitative study reports on the impact of MS on functioning and disability from the patient perspective. The participants in this study provided information about all physical aspects and areas of daily life affected by the disease, as well as the environmental factors influencing their lives

Rates and predictors of recurrent work disability due to common mental health disorders in the United States.

ContextDespite the high prevalence of work disability due to common mental disorders (CMD), no information exists on the rates and predictors of recurrence in a United States population.ObjectiveTo estimate recurrent work disability statistics and evaluate factors associated with recurrence due to CMDs including adjustment, anxiety, bipolar, and depressive disorders.MethodsRecurrent work disability statistics were calculated using a nationwide database of disability claims. For the CMDs, univariate and multiple variable analyses were used to examine demographic factors and comorbidities associated with the time to recurrence.ResultsOf the CMDs, cases with bipolar (n = 3,017) and depressive disorders (n = 20,058) had the highest recurrence densities, 98.7 and 70.9 per 1000 person-years, respectively. These rates were more than three times higher than recurrence rates for other chronic disorders (e.g., diabetes, asthma; n = 105,558) and non-chronic disorders (e.g., injury, acute illnesses; n = 153,786). Individuals with CMD were also more likely to have a subsequent disability distinct from their mental health condition. Risk factors for recurrent CMD disability included being younger, being an hourly employee, living in a geographic area with more college graduates, having more previous psychiatric visits, having a previous work leave, and the type of work industry.ConclusionsResults indicate that CMD patients may benefit from additional care and disability management both during and after their work absence to help prevent subsequent CMD and non-CMD related leaves

Writing Centers and Disability: Enabling Writers Through an Inclusive Philosophy

In its Position Statement on Disability and Writing Centers, the International Writing Centers Association (IWCA) recognizes and emphasizes the relationship between writing centers and disability and “encourages scholarship that explores the ways disability intersects with writing center work.” The IWCA further encourages writing centers to be inclusive to all writers by adopting “communication that takes into account various learning styles or ways of processing language.” We too, argue that writing centers should be welcoming environments for all writers and that they should engage with their writers as unique beings, making accessible to them the individuation of instruction and support. Writing centers should be spaces where the multiple barriers that students experience in their writing are addressed and a variety of options are provided.University Writing Cente

A Guide to Disability Statistics from the Survey of Income and Program Participation

This paper discusses the utility of the SIPP in disability analyses, including a summary of descriptive statistics on people with disabilities from multiple SIPP panels, including the most recent SIPP panel (2001). The findings provide insights into the various health, employment, income, and program participation outcomes that may be associated with different definitions of disability and illustrates the potential for using SIPP data in further disability analyses. Our descriptive findings highlight the differences in the demographic composition and outcomes across disability definitions, underscoring the importance of carefully selecting an appropriate disability conceptualization in generating disability statistics

Effect of natalizumab on disease progression in secondary progressive multiple sclerosis (ASCEND). a phase 3, randomised, double-blind, placebo-controlled trial with an open-label extension

Background: Although several disease-modifying treatments are available for relapsing multiple sclerosis, treatment effects have been more modest in progressive multiple sclerosis and have been observed particularly in actively relapsing subgroups or those with lesion activity on imaging. We sought to assess whether natalizumab slows disease progression in secondary progressive multiple sclerosis, independent of relapses. Methods: ASCEND was a phase 3, randomised, double-blind, placebo-controlled trial (part 1) with an optional 2 year open-label extension (part 2). Enrolled patients aged 18–58 years were natalizumab-naive and had secondary progressive multiple sclerosis for 2 years or more, disability progression unrelated to relapses in the previous year, and Expanded Disability Status Scale (EDSS) scores of 3·0–6·5. In part 1, patients from 163 sites in 17 countries were randomly assigned (1:1) to receive 300 mg intravenous natalizumab or placebo every 4 weeks for 2 years. Patients were stratified by site and by EDSS score (3·0–5·5 vs 6·0–6·5). Patients completing part 1 could enrol in part 2, in which all patients received natalizumab every 4 weeks until the end of the study. Throughout both parts, patients and staff were masked to the treatment received in part 1. The primary outcome in part 1 was the proportion of patients with sustained disability progression, assessed by one or more of three measures: the EDSS, Timed 25-Foot Walk (T25FW), and 9-Hole Peg Test (9HPT). The primary outcome in part 2 was the incidence of adverse events and serious adverse events. Efficacy and safety analyses were done in the intention-to-treat population. This trial is registered with ClinicalTrials.gov, number NCT01416181. Findings: Between Sept 13, 2011, and July 16, 2015, 889 patients were randomly assigned (n=440 to the natalizumab group, n=449 to the placebo group). In part 1, 195 (44%) of 439 natalizumab-treated patients and 214 (48%) of 448 placebo-treated patients had confirmed disability progression (odds ratio [OR] 0·86; 95% CI 0·66–1·13; p=0·287). No treatment effect was observed on the EDSS (OR 1·06, 95% CI 0·74–1·53; nominal p=0·753) or the T25FW (0·98, 0·74–1·30; nominal p=0·914) components of the primary outcome. However, natalizumab treatment reduced 9HPT progression (OR 0·56, 95% CI 0·40–0·80; nominal p=0·001). In part 1, 100 (22%) placebo-treated and 90 (20%) natalizumab-treated patients had serious adverse events. In part 2, 291 natalizumab-continuing patients and 274 natalizumab-naive patients received natalizumab (median follow-up 160 weeks [range 108–221]). Serious adverse events occurred in 39 (13%) patients continuing natalizumab and in 24 (9%) patients initiating natalizumab. Two deaths occurred in part 1, neither of which was considered related to study treatment. No progressive multifocal leukoencephalopathy occurred. Interpretation: Natalizumab treatment for secondary progressive multiple sclerosis did not reduce progression on the primary multicomponent disability endpoint in part 1, but it did reduce progression on its upper-limb component. Longer-term trials are needed to assess whether treatment of secondary progressive multiple sclerosis might produce benefits on additional disability components. Funding: Biogen

A longitudinal study of abnormalities on MRI and disability from multiple sclerosis

Background: In patients with isolated syndromes that are clinically suggestive of multiple sclerosis, such as optic neuritis or brain-stem or spinal cord syndromes, the presence of lesions as determined by T2-weighted magnetic resonance imaging (MRI) of the brain increases the likelihood that multiple sclerosis will develop. We sought to determine the relation between early lesion volume, changes in volume, and long-term disability. Methods: Seventy-one patients in a serial MRI study of patients with isolated syndromes were reassessed after a mean of 14.1 years. Disability was measured with the use of Kurtzke's Expanded Disability Status Scale (EDSS; possible range, 0 to 10, with a higher score indicating a greater degree of disability). Results: Clinically definite multiple sclerosis developed in 44 of the 50 patients (88 percent) with abnormal results on MRI at presentation and in 4 of 21 patients (19 percent) with normal results on MRI. The median EDSS score at follow-up for those with multiple sclerosis was 3.25 (range, 0 to 10); 31 percent had an EDSS score of 6 or more (including three patients whose deaths were due to multiple sclerosis). The EDSS score at 14 years correlated moderately with lesion volume on MRI at 5 years (r=0.60) and with the increase in lesion volume over the first 5 years (r=0.61). Conclusions: In patients who first present with isolated syndromes suggestive of multiple sclerosis, the increases in the volume of the lesions seen on magnetic resonance imaging of the brain in the first five years correlate with the degree of long-term disability from multiple sclerosis. This relation is only moderate, so the volume of the lesions alone may not be an adequate basis for decisions about the use of disease-modifying treatment