A multi-center international study on the spinal cord independence measure, version IV: Rasch psychometric validation.

CONTEXT: The Spinal Cord Independence Measure is a comprehensive functional rating scale for individuals with spinal cord lesion (SCL). OBJECTIVE: To validate the scores of the three subscales of SCIM IV, the fourth version of SCIM, using advanced statistical methods. STUDY DESIGN: Multi-center cohort study. SETTING: Nineteen SCL units in 11 countries. METHODS: SCIM developers created SCIM IV following comments by experts, included more accurate definitions of scoring criteria in the SCIM IV form, and adjusted it to assess specific conditions or situations that the third version, SCIM III, does not address. Professional staff members assessed 648 SCL inpatients, using SCIM IV and SCIM III, at admission to rehabilitation, and at discharge. The authors examined the validity and reliability of SCIM IV subscale scores using Rasch analysis. RESULTS: The study included inpatients aged 16-87 years old. SCIM IV subscale scores fit the Rasch model. All item infit and most item outfit mean-square indices were below 1.4; statistically distinct strata of abilities were 2.6-6; most categories were properly ordered; item hierarchy was stable across most clinical subgroups and countries. In a few items, however, we found misfit or category threshold disordering. We found SCIM III and SCIM IV Rasch properties to be comparable. CONCLUSIONS: Rasch analysis suggests that the scores of each SCIM IV subscale are reliable and valid. This reinforces the justification for using SCIM IV in clinical practice and research.

Protocol for a living systematic review for the management of concussion in adults.

INTRODUCTION: Concussion/mild traumatic brain injury (mTBI) often presents initially with disabling symptoms that resolve, but for an unfortunate minority some of these symptoms may become prolonged. Although research into diagnosis and interventions for concussion is increasing, study quality overall remains low. A living systematic review that is updated as evidence becomes available is the ideal research activity to inform a living guideline targeting clinicians and patients. The purpose of this paper is to present the protocol of an ongoing living systematic review for the management of adult concussion that will inform living guidelines building off the Guideline for Concussion/Mild Traumatic Brain Injury and Persistent Symptoms: third Edition. METHODS AND ANALYSIS: The Preferred Reporting Items for Systematic Review and Meta-Analysis Protocol guidelines were followed in the reporting of this systematic review protocol. We are including English peer-reviewed observational studies, trials, qualitative studies, systematic reviews and clinical practice guidelines related to diagnosis/assessment or treatment of adult concussion. Future searches will be conducted at minimum every 6 months using the following databases: MEDLINE ALL, EMBASE, Cochrane, PsycInfo and CINAHL. The data are managed in the Covidence website. Screening, data extraction and risk-of-bias assessments are being done through multiple raters working independently. Multiple validated tools are being used to assess risk of bias, and the tool applied matches the document or study design (eg, Downs and Black Scale for healthcare interventions). Many concussion experts in various clinical disciplines from across North America have volunteered to examine the evidence in order to make recommendations for the living guidelines. ETHICS AND DISSEMINATION: No ethical approval is necessary because primary data are not collected. The results will be disseminated through peer-reviewed publications and on the living guidelines website once built. PROSPERO REGISTRATION NUMBER: CRD42022301786.

Reliability Validity and Responsiveness of the Spinal Cord Independence Measure 4th Version in a Multicultural Setup.

OBJECTIVE: To examine the fourth version of the Spinal Cord Independence Measure for reliability and validity. DESIGN: Partly blinded comparison with the criterion standard Spinal Cord Independence Measure III, and between examiners and examinations. SETTING: A multicultural cohort from 19 spinal cord injury units in 11 countries. PARTICIPANTS: A total of 648 patients with spinal cord injury. INTERVENTION: Assessment with Spinal Cord Independence Measure (SCIM IV) and Spinal Cord Independence Measure (SCIM III) on admission to inpatient rehabilitation and before discharge. MAIN OUTCOME MEASURES: SCIM IV interrater reliability, internal consistency, correlation with and difference from SCIM III, and responsiveness. RESULTS: Total agreement between examiners was above 80% on most SCIM IV tasks. All Kappa coefficients were above 0.70 and statistically significant (P<.001). Pearson's coefficients of the correlation between the examiners were above 0.90, and intraclass correlation coefficients were above 0.90. Cronbach's alpha was above 0.96 for the entire SCIM IV, above 0.66 for the subscales, and usually decreased when an item was eliminated. Reliability values were lower for the subscale of respiration and sphincter management, and on admission than at discharge. SCIM IV and SCIM III mean values were very close, and the coefficients of Pearson correlation between them were 0.91-0.96 (P<.001). The responsiveness of SCIM IV was not significantly different from that of SCIM III in most of the comparisons. CONCLUSIONS: The validity, reliability, and responsiveness of SCIM IV, which was adjusted to assess specific patient conditions or situations that SCIM III does not address, and which includes more accurate definitions of certain scoring criteria, are very good and quite similar to those of SCIM III. SCIM IV can be used for clinical and research trials, including international multi-center studies, and its group scores can be compared with those of SCIM III.

How can we improve the experiences of patients and families who request medical assistance in dying? A multi-centre qualitative study.

BACKGROUND: Medical assistance in dying has been available in Canada for 5 years, but it is unclear which practices contribute to high-quality care. We aimed to describe patient and family perspectives of quality of care for medical assistance in dying. METHODS: We conducted a multi-centre, qualitative descriptive study, including face to face or virtual one-hour interviews using a semi-structured guide. We interviewed 21 english-speaking patients found eligible for medical assistance in dying and 17 family members at four sites in Canada, between November 2017 and September 2019. Interviews were de-identified, and analyzed in an iterative process of thematic analysis. RESULTS: We identified 18 themes. Sixteen themes were related to a single step in the process of medical assistance in dying (MAID requests, MAID assessments, preparation for dying, death and aftercare). Two themes (coordination and patient-centred care) were theme consistently across multiple steps in the MAID process. From these themes, alongside participant recommendations, we developed clinical practice suggestions which can guide care. CONCLUSIONS: Patients and families identified process-specific successes and challenges during the process of medical assistance in dying. Most importantly, they identified the need for care coordination and a patient-centred approach as central to high-quality care. More research is required to characterize which aspects of care most influence patient and family satisfaction.

How We Can Improve the Quality of Care for Patients Requesting Medical Assistance in Dying: A Qualitative Study of Health Care Providers.

CONTEXT: Since Canada decriminalized medical assistance in dying (MAID) in 2015, clinicians and organizations have developed policies and protocols to implement assisted dying in clinical practice. Five years on, there is little consensus as to what constitutes high-quality care in MAID. OBJECTIVES: To describe MAID clinicians' perspectives on quality of care in MAID, including challenges, successes, and clinical practice suggestions. METHODS: We conducted an exploratory, multicenter, and qualitative study at four Canadian centers. Using a semistructured interview guide, we conducted interviews with 20 health care providers. Interviews were transcribed and deidentified before analysis. Adopting a qualitative descriptive approach, we used a thematic analysis to identify primary and secondary themes in the interviews and practice suggestions to improve quality of care to patients who request MAID. RESULTS: We identified three major themes. 1) Improving access and patient experience: clinicians described struggles in ensuring equitable access to MAID and supporting MAID patients and their families. 2) Supporting providers and sustainability: clinicians described managing MAID workload, remuneration, educational needs, and the emotional impact of participating in assisted dying. 3) Institutional support: descriptions of MAID communication tools and training, use of standardized care pathways, interprofessional collaboration, and human resource planning. Clinicians also described suggestions for clinical practice to improve quality of care. CONCLUSION: Canadian health care providers described unique challenges in caring for patients who request MAID, along with practices to improve the quality of care.

Feasibility of an Interactive Coaching App to Enhance Post-concussion Outpatient Care.

Objectives: To determine the feasibility of patients to use a web-based health app for management of post-concussion (mTBI) symptoms in an out-patient setting. Participants: Seven (7) patients who were referred to an outpatient specialist clinic (physiatry) with persisting symptoms following a concussion. Participants had to be 18 years of age or older and more than 3 months post injury. Design: This was a prospective cohort study using a web-based platform for chronic disease management to guide patients in managing symptoms based on individual clinical recommendations. Each patient received weekly Symptom Management Plans created by a health coach and a physician specialist, designed to reinforce positive progress with clinical recommendations. Main Measures: Adherence to tracking daily recommendations and symptoms (data collected through the web-interface), The Rivermead Post-Concussion Questionnaire (self report) and a Satisfaction Questionnaire (self report). Results: Adherence to assigned clinical recommendations was close to 100%. Pre-post results on the patient reported outcome measure (Rivermead Post Concussion Tool) showed improvement for most patients in their experience of symptoms. The Satisfaction Questionnaire showed high rates of satisfaction with the App and the intervention in general. Conclusions: Use of a web-based health app with a health coach is feasible in this patient population from both the patient and clinician perspective based on high adherence. There is also some evidence of improvement of symptoms with this intervention over time. Further exploration of the use of this type of intervention with post-concussion patients could potentially impact long-term outcomes.

Impact of Palliative Care Consultations on Resource Utilization in the Final 48 to 72 Hours of Life at an Acute Care Hospital in Ontario, Canada.

A wealth of literature and economic analyses has shown that palliative care is associated with significant cost reductions compared to nonpalliative care. However, no one has assessed the impact of an inpatient palliative care consultation service on costs at the very end of life (48 to 72 hours before death). This retrospective cohort review of 100 inpatients at a large hospital in Ontario examines the effect of palliative care consultations on seven independent cost categories during this period: medical-imaging costs, physician costs, laboratory costs, pharmaceutical costs, other health professional costs, food services costs, and unit costs. Our study shows that patients who receive palliative care consultations are associated with significantly lower costs in the final 48 to 72 hours of life than their nonpalliative counterparts. Another significant finding was that the degree of cost reduction at the very end of life appears to be relative to how soon after the patient's admission the palliative care consultation was initiated.

Documentation of capacity and identification of substitute decisionmakers in Ontario.

Documenting capacity assessments and identifying substitute decisionmakers (SDMs) in healthcare facilities is ethically required for optimal patient care. Lack of such documentation has the potential to generate confusion and contention among patients, their family members, and members of the healthcare team. An overview of our research at the Ottawa Hospital and issues that influence the consistency of documentation in the Canadian context are presented here, as well as ideas for the mitigation of these issues and ways to encourage better documentation.

Formal ventilation patient education for ALS predicts real-life choices.

Our objective was to evaluate a single-session, hands-on education programme on mechanical ventilation for ALS patients and caregivers in terms of knowledge, change in affect and to determine whether ventilator decisions made after the education sessions predict those made later in life. Questionnaires were administered to 26 patients and 26 caregivers on four separate occasions. The questionnaires assessed knowledge of ventilatory support, feedback on the nature of the education programme, as well as self-reported emotional well-being. All patients were followed until their death or until initiation of invasive ventilation. Both groups demonstrated significant improvements in knowledge as a result of the education session which was retained after one month. There was no change in patient or caregiver reports' self-reported emotional well-being. The choices of ventilatory support expressed at one month (T4) accurately predicted the real-life clinical choices made by 76% of patients. Any difference resulted from choosing palliative care. Hands-on patient and caregiver education results in improved knowledge, assists in decision-making with respect to ventilatory support, and is not associated with a worsening of affect. It also provides for an accurate prediction of real-life choices and avoids undesired life support interventions and critical care admissions.

Mind the gap: the lack of common language in healthcare ethics.

Ethics consultation services provide support to staff, patients, and family members who find themselves in morally difficult situations in healthcare settings. Not unlike other clinical consultation services, ethics consultation activities should be well documented. Good documentation allows for evaluation of the consultation process and the ability to refer back to consults when needed, and provides data for future research in healthcare ethics (HCE). In our exploration of existing HCE documentation systems, we identified two main points of interest. First, HCE information documentation systems are powerful tools for providing information on ethics consultation services.These documentation systems can be used to produce detailed reports on various HCE activities both institutionally and cross-institutionally. Second, our findings indicate greater agreement in the language and terminology of HCE needs to be established. Cultivation of such common language is needed in order to develop a standard healthcare ethicists can use to document and categorize consults. Standardization of language would allow data to be readily comparable and lead to more consistency in documentation of ethics consultations. Ultimately, standardization of documentation can also constitute a standard of practice for HCE in general.The development of such standards is essential for any developing profession, and will be required for HCE as it moves in towards professionalization in Canada.

Concordance in goal setting between patients with multiple sclerosis and their rehabilitation team.

OBJECTIVE: To determine the concordance between patients with multiple sclerosis and their clinical team members on the identification of goals for an inpatient rehabilitation stay. DESIGN: Prospective cohort study of patients admitted for rehabilitation in an adult inpatient neurospinal unit at a Rehabilitation Centre in Ottawa, Canada. Twenty-seven patients (11 men and 16 women, mean age of 45.3 yrs) with either a laboratory or a clinically supported diagnosis of multiple sclerosis. Patients rated 55 goals from a preexisting list, indicating the importance of each goal to be addressed during the inpatient stay. The goals fell into five broad domains of health/medical issues, daily activities, mobility, community life, and personal well-being. Patients also identified their five most important individual goals. In a separate session, the clinical team also rated the 55 goals in relation to each patient and identified an independent list of the five most important rehabilitation goals. Main outcome measures included concordance between patient and team ratings in the identification of goals, ratings of the likelihood of success of achieving each goal, and ratings of the amount of change required to realize a minimal clinically important difference. RESULTS: The patients and the team agreed on an average of 1.7 of the patient's five top-rated goals. Compared with the team, patients gave higher importance ratings to goals within the health/medical, mobility, and daily activities domains. They also considered that a greater average improvement would be required to achieve a meaningful benefit, and they gave higher ratings of the likelihood of success in achieving their selected goals. CONCLUSION: Patients with multiple sclerosis and clinical team members do not necessarily agree on specific goals for a rehabilitation stay. Patients may also have greater expectations than clinicians with respect to the amount of improvement and the likelihood of achieving their goals.

Delay of supraspinatus repair by up to 12 weeks does not impair enthesis formation: a quantitative histologic study in rabbits.

The purpose of this study was to find out whether supraspinatus repair delayed by up to12 weeks affects the formation of a new enthesis when compared to an immediate repair. In 67 rabbits, the supraspinatus fibrocartilaginous enthesis of one shoulder was resected. The tendon was attached to the greater tuberosity either immediately, after a 6-week, or after a 12-week delay. Five histologic variables were used to assess enthesis formation: number of non-chondrocytes, number of chondrocytes, alignment of chondrocytes in rows, area of metachromasia on toluidine blue (TB)-stained sections indicating proteoglycan content, and area of diffracted polarized light indicating spatial alignment of collagen fibers. For every variable, progressive enthesis formation was observed. Again, for every variable and at every time point studied, no statistically significant difference was observed between tendons repaired immediately, after 6, or after 12 weeks (all p>0.05). Supraspinatus tendon repairs delayed by 6 and 12 weeks constituted an enthesis which proceeded identically to one immediately repaired. Formation of a fibrocartilaginous enthesis depended on the elapsed time after repair and not on the duration between detachment and repair. Despite stated limitations, these results support both a trial of conservative treatment after a rotator cuff tear and a positive outcome of rotator cuff repair even if delayed by up to 12 weeks.

A burden to others: a common source of distress for the terminally ill.

Recent research into the desire for death among people with terminal illness has begun to recognize the importance of "feeling oneself a burden to others" as a factor in suicidal behaviour. In this study, 69 patients with advanced cancer underwent semi-structured interviews. The sense of self-perceived burden was found to be a common experience, reported by 39.1% of participants as a minimal or mild concern and by 38% as a moderate to extreme concern. The sense of burden showed a low correlation with physical symptoms (r = 0.02-0.24) and higher correlations with psychological problems (r = 0.35-0.39) and existential issues (r = 0.45-0.49). Comparisons of participants with high or low levels of self-perceived burden showed the importance of this factor for overall quality of life. In summary, self-perceived burden is an important but underestimated dimension of social cognition in the medically ill.

Clinical significance and predictors of treatment response to cognitive-behavior therapy for insomnia secondary to chronic pain.

We examined individual responses to cognitive-behavior therapy for insomnia in 51 persons with chronic pain to determine the rate of clinically significant change and to identify predictors of successful treatment response. Outcome measures consisted of the Pittsburgh Sleep Quality Index (PSQI) and diary measures of sleep latency and sleep continuity. Using reliable change indices, 57% of participants were statistically improved on the PSQI after 7 weeks of treatment, but only 18% were considered fully recovered from their sleep problems. No demographic variables predicted treatment response but persons who reliably improved on the PSQI had a lower sleep self-efficacy at baseline. Improvers showed a significant increase in sleep self-efficacy ratings and a decrease in self-reported levels of distress and pain-related disability. These results suggest that patients with insomnia secondary to chronic medical conditions can be helped with cognitive-behavior therapy, although most individuals continue to have mild or subthreshold sleep problems at posttreatment.