Portrait of mental health identified by people with the post-covid syndrome.

OBJECTIVES: This study aimed to produce a patient-centered understanding of mental health symptoms of people with the post-COVID-19 syndrome (PCS). METHODS: A cross-sectional analysis of 414 participants in a longitudinal study was carried out involving people who self-identified as having symptoms of PCS. People were asked to name their most frequent and most bothersome mental health symptoms affected by PCS using the structure of the Patient Generated Index (PGI). The text threads from the PGI were grouped into topics using BERTopic analysis. RESULTS: 20 topics were identified from 818 text threads referring to PCS mental health symptoms. 35% of threads were identified as relating to anxiety, discussed in terms of five topics: generalized/social anxiety, fear/worry, post-traumatic stress, panic, and nervous. 29% of threads were identified as relating to low mood, represented by five topics: depression, discouragement, emotional distress, sadness, and loneliness. A cognitive domain (22% of threads) was covered by four topics referring to concentration, memory, brain fog, and mental fatigue. Topics related to frustration, anger, irritability. and mood swings (7%) were considered as one domain and there were separate topics related to motivation, insomnia, and isolation. CONCLUSIONS: This novel method of digital transformation of unstructured text data uncovered different ways in which people think about classical mental health domains. This information could be used to evaluate whether existing measures cover the content identified by people with PCS, to initiate a clinical conversation, or to justify the development of a new measure of the mental health impact of PCS.

Admission and discharge profiles of people with MS accessing in-patient rehabilitation in Canada.

BACKGROUND: Rehabilitation is the mainstay of management for people with disabilities of neurological origin to maximize function and reduce disability. Access to in-patient rehabilitation is usually reserved for people after crises or those who are discharged from acute care such as in stroke or trauma. Access to people with Multiple Sclerosis (MS) differs across countries and unknown for Canada. With the progression of MS, quality of life (QOL) becomes more closely coupled with independence and hence timely access to rehabilitation is important. The objectives of this paper are (i) to characterize the disability profiles of people with MS admitted to in-patient rehabilitation in Canada; and (ii) to estimate the extent to which disability profiles differ from admission to discharge. METHODS: A longitudinal study of a rehabilitation admission-to-discharge cohort of 3500 people with MS was conducting using latent class analysis on the five Functional Independence Measure (FIM) subscales for Self-care, Transfers, Locomotion, Bladder/Bowel, and Cognition. The extent to which age, sex, and calendar time was associated with latent class membership, at both admission and discharge, was estimated using ordinal logistic regression, and proportional odds model was calculated for each age and sex. RESULTS: At admission five classes were identified. The two most prevalent classes included people with total or moderate dependency in all FIM subscales except cognition (n = 1205 and n = 1099). The third most common was dependent in ambulation only (n = 523), followed by dependence in ambulation with varying degree of limitation in self-care and transfers (n = 465, and n = 208). At discharge four classes were identified with the largest class comprising of people dependent in ambulation and to a lesser degree in transfers (n = 1010). The second most prevalent class was no dependency (n = 946), followed by two classes with varying dependency in all subscales but cognition (n = 678 and n = 771). CONCLUSION: Overall 62.3% of admissions transitioned to a more functional class by discharge. By discharge 28% of the population was characterized by no dependencies; however, 23% remained with dependencies in all areas. Those in the most dependent classes showed the greatest probability of transitioning to a better class at discharge highlighting the importance of reserving scarce rehabilitation services to those with more disability.

Reducing research wastage by starting off on the right foot: optimally framing the research question.

PURPOSE: Strongly framed research questions are clear as to the population (P), the exposures or interventions (E/I), comparison groups (C), outcomes (O), time when relevant (T), and what the investigator wants to know. A solid framework sets up the measurement model, analysis, and anticipated results. The purpose of this study was to estimate the extent to which research questions in journals that focused on patient-reported outcome measures (PROM) and quality of life (QOL) are clear. METHODS: All 440 research articles published in four PROM journals in 2020. excluding reviews, psychometric, and qualitative papers, were reviewed. Research questions were classified as: (i) adequately framed (ii) poorly framed; or (iii) unframed based on clarity criteria. Examples from each journal were presented and reframed to match results in the article. RESULTS: Of 440 articles, 195 (44.3%) were classified as adequately framed; 230 (52.2%) as poorly framed; and 15 (3.4%) as unframed. There was heterogeneity across journals (Chi-square: 20.8; 6 df; p = 0.002). Only 29% were framed according to what the investigators wanted to know; 72% were framed like a "to do" list; and 6% were framed as a research agenda. CONCLUSION: Almost half of the questions were poorly framed or unframed a practice that could contribute to research wastage. Even "adequately framed" questions rarely stated what they wanted to know a priori, increasing the risk of biased reporting. Researchers, reviewers, and editors should encourage the use established frameworks for research questions.

Are the Items of the Starkstein Apathy Scale Fit for the Purpose of Measuring Apathy Post-stroke?

Importance: Given the importance of apathy for stroke, we felt it was time to scrutinize the psychometric properties of the commonly used Starkstein Apathy Scale (SAS) for this purpose. Objectives: The objectives were to: (i) estimate the extent to which the SAS items fit a hierarchical continuum of the Rasch Model; and (ii) estimate the strength of the relationships between the Rasch analyzed SAS and converging constructs related to stroke outcomes. Methods: Data was from a clinical trial of a community-based intervention targeting participation. A total of 857 SAS questionnaires were completed by 238 people with stroke from up to 5 time points. SAS has 14 items, rated on a 4-point scale with higher values indicating more apathy. Psychometric properties were tested using Rasch partial-credit model, correlation, and regression. Items were rescored so higher scores are interpreted as lower apathy levels. Results: Rasch analysis indicated that the response options were disordered for 8/14 items, pointing to unreliability in the interpretation of the response options; they were consequently reduced from 4 to 3. Only 9/14 items fit the Rasch model and therefore suitable for creating a total score. The new rSAS was deemed unidimensional (residual correlations: < 0.3), reasonably reliable (person separation index: 0.74), with item-locations uniform across time, age, sex, and education. However, 30% of scores were > 2 SD above the standardized mean but only 2/9 items covered this range (construct mistargeting). Apathy (rSAS/SAS) was correlated weakly with anxiety/depression and uncorrelated with physical capacity. Regression showed that the effect of apathy on participation and health perception was similar for rSAS/SAS versions: R2 participation measures ranged from 0.11 to 0.29; R2 for health perception was ∼0.25. When placed on the same scale (0-42), rSAS value was 6.5 units lower than SAS value with minimal floor/ceiling effects. Estimated change over time was identical (0.12 units/month) which was not substantial (1.44 units/year) but greater than expected assuming no change (t: 3.6 and 2.4). Conclusion: The retained items of the rSAS targeted domains of behaviors more than beliefs and results support the rSAS as a robust measure of apathy in people with chronic stroke.

Properties of common anxiety scales among patients with bipolar disorder.

OBJECTIVES: Almost half of the patients with a bipolar disorder (BD) have anxiety disorder(s) (AD) during their lifetime, but feasible measures for all AD are few. Furthermore, cognitive impairments can compromise reliability of existing scales, since many are needed for full coverage. Thus, we investigated how reliably patients responded to anxiety scales and any symptom overlap to propose future improvements to anxiety assessments. METHODS: We collected 152 observations in patients with BD with the Clinically Useful Anxiety Outcome Scale, Social Phobia Inventory, Panic Disorder Severity Measurement, and Trauma Screening Questionnaire (in total, 57 items). The scales were analyzed as a set in a Rasch model. RESULTS: During our analyses, we found indication that BD outpatients had difficulty differentiating response options to 70% (40/57) of items which were rescored or deleted. Only one case was misfitting (-2.65±.41). In total, 22 items were locally dependent and one indicated misfit. The final model included 25-items and fit the Rasch model (χ2=35.92, DF=50, p=.93). The model was unidimensional, without losing appropriate associations with depression (r = 0.62), suicidality (r = 0.37), and hypomania (r= -0.01). LIMITATIONS: Bolstering the size of less frequent subgroups should be accomplished in future work. CONCLUSION: A unidimensional rather than categorical approach to severity of anxiety might be both useful and feasible in this population. Further development of screens is necessary to enable systematic screening and measurement of anxiety in BD.

Functioning Profiles of Young People with MS in Inpatient Rehabilitation: Data from the National Rehabilitation Reporting System in Canada.

BACKGROUND: Recent evidence has suggested an existence of a MS prodome, indicating that symptoms of neurodegeneration were present before the first clinical event. These early signs of MS are usually not recognized as a symptom of MS and some young adults with MS are very likely to have had these symptoms in their childhood or adolescence. It is thus of interest to examine the differences in disability profiles of young people with MS. This study focused on young people with MS with severe enough disability as to need rehabilitation services. The most likely reason for this need is poor recovery from a relapse. OBJECTIVES: The purpose of the study is to characterize and compare the functional profiles (as reflected by Functional Independence Measure scores) of people with MS admitted to in-patient rehabilitation in Canada across two age groups (younger than 25 and 26 to 35 years old) with specific aims to estimate the extent to which these profiles change over time; and to identify the proportions of people who made a reliable change. METHODS: Data from the National Rehabilitation Reporting System (NRS) in Canada was analyzed. The dataset contained information of 457 people with MS aged 16 to 35 who were admitted to inpatient rehabilitation. Scores on the Functional Independence Measure at admission and discharge were analyzed using latent class analysis. Change in FIM was estimated using reliable change index. Probability of making a reliable change across the different classes, age and sex was estimated using logistic regression. RESULTS: There were four functional classes at admission and three classes at discharge. The four functional classes at admission were: A). Minimal assistance/Supervision in walking, B). Assistance in Activities of Daily Living (ADL)/Mobility, C). Assistance/dependent in ADL/Mobility, and D). Dependent in ADL and mobility. At admission, 19.7% of patients belonged to the best class, but at discharge, 66.8% of people belonged to the best class, indicating that 45% of the patients improved. Across the two age groups, disability profiles differed at admission and discharge. People who are 25 years and younger were more likely to belong to the lower functioning profiles classes (Class C and D) compared to the older group who were more likely to belong to Class B and C, indicating that younger people were more impaired at admission. The probability of making reliable change was also different between the latent classes. People in the lowest two classes at admission, were more likely to make reliable change (OR=10.9, OR=7.2). CONCLUSIONS: The results of this study suggest that younger people were admitted with a more severe disability profile when compared to a slightly older group but were more likely to make improvements during rehabilitation. The functional profiles in MS differed across sex and age, signaling a need to tailor rehabilitation interventions across the functional profiles, age and sex. Accessing existing sources of data is a useful method for filling in gaps about outcomes for populations with rare diseases.

Trajectory of MS disease course for men and women over three eras.

BACKGROUND: Heterogeneity in disease course exists within multiple sclerosis (MS) subtypes. OBJECTIVE: The objective was to estimate disease course heterogeneity over three distinct onset periods (pre-1995, 1995-2004, and 2005-present) for men and women. METHODS: Group-based trajectory model (GBTM) was used to estimate clusters of patients following stable or unstable disease progression trajectories based on the Expanded Disability Status Scale (EDSS). Inception cohorts were generated from the Montreal Neurological Institute MS Clinic registry. Stable trajectories were defined as an EDSS ⩽3.0 and change ⩽1 point over the study period. Annualized relapse rate (ARR) based on the first 5 years of disease was an explanatory variable. RESULTS: Proportion of women classified as stable was 0% for pre-1995, 69.0% for 1995-2004, and 83.9% post-2005; for men, these proportions were 18.4%, 41.4%, and 53.8%, respectively. Men had lower percentage of stable disease than women in both post-1995 cohorts (chi-square p < 0.0001). ARR was associated with higher disability trajectories in both post-1995 cohort (odds ratios >1.0) but not in the pre-1995 cohort. CONCLUSION: Large proportions of patients remain stable at their initial disability level for at least 15 years. Higher ARR increases the odds of patients being in a higher disability trajectory in the latter cohorts.

How have research questions and methods used in clinical trials published in Clinical Rehabilitation changed over the last 30 years?

Research in rehabilitation has grown from a rare phenomenon to a mature science and clinical trials are now common. The purpose of this study is to estimate the extent to which questions posed and methods applied in clinical trials published in Clinical Rehabilitation have evolved over three decades with respect to accepted standards of scientific rigour. Studies were identified by journal, database, and hand searching for the years 1986 to 2016.A total of 390 articles whose titles suggested a clinical trial of an intervention, with or without randomization to form groups, were reviewed. Questions often still focused on methods to be used (57%) rather than what knowledge was to be gained. Less than half (43%) of the studies delineated between primary and secondary outcomes; multiple outcomes were common; and sample sizes were relatively small (mean 83, range 5 to 3312). Blinding of assessors was common (72%); blinding of study subjects was rare (19%). In less than one-third of studies was intention-to-treat analysis done correctly; power was reported in 43%. There is evidence of publication bias as 83% of studies reported either a between-group or a within-group effect. Over time, there was an increase in the use of parameter estimation rather than hypothesis testing and there was evidence that methodological rigour improved.Rehabilitation trialists are answering important questions about their interventions. Outcomes need to be more patient-centred and a measurement framework needs to be explicit. More advanced statistical methods are needed as interventions are complex. Suggestions for moving forward over the next decades are given.

Methods and measures: what's new for MS?

At no other time in the history of multiple sclerosis (MS) has the accurate measurement of health outcomes been so important. There are now many kinds of interventions of proven or potential efficacy available for people with MS and many other methods are under investigation. Not all outcomes that matter can be measured with a biological parameter. Many important outcomes of treatment can be assessed only by asking the patient directly. For clinical decision making, asking one good question, asking it consistently, and writing down the answer will produce historically accurate data to judge MS progression on life-altering constructs like fatigue, depression and pain. To get a total score from items in a questionnaire, Rasch Measurement Theory provides a way of estimating the extent to which the items form a linear continuum with mathematical properties. Preference-based measures, when the preferences are derived from patients, permit the impact of the multiple health dimensions associated with MS to be valued. The bottom line is, ask a good question and you will likely get a good answer, ask a poor question and assuredly, you will not.

Pharmacotherapy in pediatric critical illness: a prospective observational study.

BACKGROUND AND OBJECTIVES: Pharmacotherapy is an under-evaluated element of critical care medicine. In order to better understand pharmacotherapy in pediatric critical illness, we evaluated a cohort of emergency admissions to a university-affiliated pediatric intensive care unit (PICU). METHODS: A prospective, observational study was performed. Eligible patients were admitted to this medical-surgical ICU for at least 24 hours. The primary outcomes were the number of drug orders written, the number of different medications ordered, and the number of drug administrations. Multiple regression analyses were used to identify factors independently associated with each primary outcome. RESULTS: We studied 100 patients with a median age of 40 months (interquartile range [IQR] 9-82), who were admitted for a total of 851 ICU days. These patients received 4419 drug orders and 11 911 intermittent dose-administrations of 241 different medications. Each patient received a median of 29.5 (IQR 16.5-48.5) drug orders, 14 (IQR 9-18.5) different medications, and 58 (IQR 28-129) drug administrations while in the ICU. The most frequent orders were for morphine 457 (10.6%), furosemide (frusemide) 337 (7.8%), potassium 237 (5.5%), lorazepam 226 (5.2%), and albuterol (salbutamol) 158 (3.7%). The duration of PICU stay and severity of illness were independently associated with all primary outcomes. CONCLUSIONS: Pharmacotherapy is an active component in the practice of pediatric critical care medicine. We demonstrated that increasing numbers of ordered medications, drug orders, and drug administrations were associated with increasing duration of ICU therapies and the length of ICU stay. These data underscore the potential importance of improved safety and efficacy of medicines used to treat critically ill children.