Predicting non-response in patient-reported outcome measures: results from the Swiss quality assurance programme in cardiac inpatient rehabilitation

Background Quality assurance programmes measure and compare certain health outcomes to ensure high quality care in the health care sector. The outcome health related quality of life (HRQOL) is typically measured by patient-reported outcome measures (PROMs). However, certain patient groups are less likely to respond to PROMs than others. This non-response bias can potentially distort results in quality assurance programmes. Our study aims to identify relevant predictors for non-response during assessment using the PROM MacNew Heart Disease questionnaire in cardiac rehabilitation. Methods This is a cross-sectional study based on data from the Swiss external quality assurance programme. All patients aged 18 years or older who underwent inpatient cardiac rehabilitation in 16 Swiss rehabilitation clinics between 2016 and 2019 were included. Patients’ sociodemographic and basic medical data were analysed descriptively by comparing two groups: non-responders and responders. We used a random intercept logistic regression model to estimate associations of patient characteristics and clinic differences with non-response. Results Of 24 572 patients, there were 33.3% non-responders and 66.7% responders. The mean age was 70; 31.0% were women. The regression model showed that being female was associated with non-response (odds ratio (OR) 1.22; 95% confidence interval (95% CI) 1.14–1.30), as well as having no supplementary health insurance (OR 1.49; 95% CI 1.39–1.59). Each additional year of age increased the chance of non-response by an OR of 1.02 (95% CI 1.02–1.02). Not being a first language speaker of German, French, or Italian increased the chance of non-response by an OR of 6.94 (95% CI 6.03–7.99). Patients admitted directly from acute care had a higher chance of non-response (OR 1.23; 95% CI 1.10–1.38), as well as patients being discharged back into acute care after rehabilitation (OR 3.89; 95% CI 3.00–5.04). Each point on the cumulative illness rating scale (CIRS) total score increased the chance of non-response by an OR of 1.05 (95% CI 1.04–1.05). Certain diagnoses also influenced the chance of non-response. Even after adjustment for known confounders, response rates differed substantially between the 16 clinics. Conclusion We have found significant non-response bias among certain patient groups, as well as across different treatment facilities. Measures to improve response rates among patients with known barriers to participation, as well as among different treatment facilities need to be considered, particularly when PROMs are being used for comparison of providers in quality assurance programmes or outcome evaluation

Assessments and interventions on body functions, structures and activity to prepare adults with acute spinal cord injury or disease for participation: a scoping review

IntroductionIn the acute phase after a spinal cord injury or disease (SCI/D), various therapeutic assessments and interventions are applied with the goal of restoring structures, preventing complications and preparing the patient as best as possible for further activity and finally participation. The goal was to identify and evaluate the available evidence on assessments and interventions for body functions and structures to prepare adults with acute spinal cord SCI/D for activity and participation during the first 14 days.MethodsA scoping review was conducted. The search was performed on June 19, 2023 using the databases PubMed, PEDro, Cochrane library and Embase. These were screened for studies including patients with acute SCI/D and physiotherapeutic or occupational therapy assessments and interventions. Only studies in English or German published between 2012 and 2023 were included.ResultsTwelve publications met the inclusion criteria, namely three systematic reviews, two randomized controlled trials, two observational studies and five clinical practice guidelines. Assessments as the Spinal Cord Independence Measure, as well as exercises such as daily passive mobilization of body structures against contractures were used in the entire population, while others were only applied in subgroups of SCI/D such as the Graded Redefined Assessment of Strength, Sensation and Prehension or functional electrical stimulation with and without additional movements. The methodological quality of the studies found varied greatly from good to very poor.DiscussionHeterogeneity in research design and study population as well as lack of high-quality studies do not cover the standard of clinical management in the acute phase and further comprehensive research is needed

Internal consistency and convergent validity of the International Spinal Cord Injury Quality of Life Basic Data Set at discharge from first rehabilitation

Study design This study is a cross-sectional analysis using data from the Swiss Spinal Cord Injury Cohort Study. Objectives To examine internal consistency and convergent validity of the International Spinal Cord Injury Quality of Life Basic Data Set (QoL-BDS) at discharge from first inpatient rehabilitation. Setting The study was performed at four rehabilitation centers in Switzerland. Methods Participants were Swiss residents aged over 16 years newly diagnosed with traumatic or non-traumatic spinal cord injury (SCI). Measures included the QoL-BDS, World Health Organization Quality of Life (WHOQOL) items, Hospital Anxiety and Depression Scale (HADS), and Spinal Cord Independence Measure III (SCIM). Results A total of 495 participants were included. In all, 57% had a traumatic SCI, 71.1% a motor complete SCI, and 33.3% had tetraplegia. Mean age was 53 (SD = 16.4) years and 68% were male. No floor or ceiling effects were found. Inter-correlations were strong (0.73-0.80) and Cronbach's alpha was good (0.88). QoL-BDS mean scores were 6.4 (SD = 2.2) for life satisfaction, 5.8 (SD = 2.4) for physical health, 6.9 (SD = 2.4) for psychological health, and 6.4 (SD = 2.1) for total QoL. Correlations with reference measures were strongest for QoL-BDS total and WHOQOL general quality of life (r = 0.67), QoL-BDS physical health and WHOQOL health and daily activities (r = 0.64 and 0.53), and QoL-BDS psychological health and HADS depression and anxiety (r = -0.64 and -0.69). SCIM correlated weakly with all QoL-BDS items. Conclusions The QoL-BDS revealed no floor or ceiling effects and demonstrated good internal consistency and convergent validity in individuals with SCI assessed at discharge from first rehabilitation. This study supports the clinical routine use of the QoL-BDS

Use of professional home care in persons with spinal cord injury in Switzerland: a cross-sectional study

BACKGROUND Persons with spinal cord injury (SCI) living in the community often require care. The boundaries between professional home care and informal care are blurred, and it is unclear who the typical user of home care is. The objective of this study was to describe the characteristics of persons with SCI using professional home care in Switzerland, determine the frequency of home care visits, and investigate the association of sociodemographic factors, SCI-specific characteristics, secondary health conditions, and functional independence with the use of home care. METHODS We used cross-sectional data from the 2017 community survey of the Swiss Spinal Cord Injury Cohort Study (SwiSCI). Out of 3,959 eligible individuals 1294 completed the questionnaire and were included in the analysis (response rate 33%). Using descriptive statistics, differences between home care users and non-users as well as the frequency of home care visits were investigated. The association between sociodemographic factors, SCI-specific characteristics, secondary health conditions, functional independence and the use of home care was analyzed using multivariable logistic regression. Multiple imputation was used to account for missing data. RESULTS Of 1,294 participants, 280 (22%) used professional home care. The median weekly professional home care duration was 6 h (Q1 = 2, Q3 = 12). More home care was used in persons with lower functional independence (Odds ratio (OR) 0.30 per 10 unit decrease in the Spinal Cord Independence Measure, 95%-Confidence interval (CI) 0.24-0.37), fewer secondary health conditions (OR 0.96 per unit Spinal Cord Injury Secondary Conditions Scale, 95%-CI 0.94-0.99), tetraplegia (OR 2.77, 95%-CI 1.92-4.00), women (OR 2.42, 95%-CI 1.70-3.43), higher age (OR 1.22 per 10 years increase, 95%-CI 1.06-1.39), living alone (OR 2.48, 95%-CI 1.53-4.03), and those receiving support from an informal caregiver (OR 1.88, 95%-CI 1.27-2.77). CONCLUSIONS This is the first study to examine the use of professional home care from the perspective of persons with SCI in Switzerland. Lower functional independence strongly predicts increased home care use. The findings showed that professional home care complements informal care and is more likely to be used by individuals with SCI who live alone, have tetraplegia, and are female

Shoulder load during synchronous handcycling and handrim wheelchair propulsion in persons with paraplegia

Objective: To compare the shoulder load during handcycling and wheelchair propulsion under similar conditions of external power in persons with spinal cord injury. Design: Cross-sectional. Subjects: Eight men with spinal cord injury. Methods: Kinetics and kinematics were measured during handbike and wheelchair propulsion at 25, 35, 45 and 55 W on a treadmill. Shoulder load (glenohumeral contact forces, relative muscle forces) was calculated with the Delft Shoulder and Elbow Model. Results: At all power output levels, glenohumeral contact forces were significantly lower during handcycling compared with wheelchair propulsion (p < 0.001). At 55 W, the mean glenohumeral contact force was 345 N for handcycling, whereas it was 585 N for wheelchair propulsion. Also, relative muscle forces were lower during handcycling. The largest differences between handbike and wheelchair propulsion were found in the supraspinatus (4.5% vs. 20.7%), infraspinatus (3.7% vs. 16.5%) and biceps (5.0% vs. 17.7%). Conclusion: Due to continuous force application in handcycling, shoulder load was lower compared with wheelchair propulsion. Furthermore, muscles that are prone to overuse injuries were less stressed during handcycling. Therefore, handcycling may be a good alternative for outdoor mobility and may help prevent overuse injuries of the shoulder complex. © 2012 The Authors

Detecting subgroups in social participation among individuals living with spinal cord injury:a longitudinal analysis of community survey data

STUDY DESIGN: Longitudinal community survey. OBJECTIVES: To determine subgroups in social participation of individuals living with spinal cord injury (SCI). SETTING: Community. METHODS: Data were collected in 2012 and 2017 as part of the community survey of the Swiss Spinal Cord Injury cohort. Participation was assessed using the 33-item Utrecht Scale of Evaluation of Rehabilitation-Participation evaluating frequency of, restrictions in and satisfaction with productive, leisure, and social activities. Linear mixed-effects model trees were used to distinguish subgroups in participation associated with sociodemographic and lesion characteristics. RESULTS: In all, 3079 observations were used for the analysis, of which 1549 originated from Survey 2012, 1530 from Survey 2017, and 761 from both surveys. Participants were mostly male (2012: 71.5%; 2017: 71.2%), aged on average 50 years (2012: 52.3; 2017: 56.5), with an incomplete paraplegia (2012: 37.5%; 2017: 41.8%) of traumatic origin (2012: 84.7%; 2017: 79.3%). There was limited within-person variation in participation over the 5-year period. Participation varied with age, SCI severity, education, financial strain, number of self-reported health conditions (SHCs), and disability pension level. Among modifiable parameters, the number of SHCs and disability pension level emerged as the most frequent partitioning variables, while education was most informative for participation in productive, leisure, and social activities. CONCLUSIONS: Long-term rehabilitation management and clinical practice should target people most prone to decreased participation in major life domains. Our study indicates that the alleviation of SHCs, engagement in further education, or adjusting disability pension level are promising areas to improve participation of persons living with SCI

Qualität aus Patientenperspektive

PROMs Dank Patient Reported Outcome Measures erhält die Patientenperspektive in der Qualitätsbeurteilung von Gesundheitseinrichtungen und -angeboten ihren festen Platz. Gleichzeitig stellen diese Indikatoren Health Care Professionals, Direktionen und Public-Health-Organisationen vor neue Herausforderungen

Endocrinological and inflammatory markers in individuals with spinal cord injury: A systematic review and meta-analysis.

Spinal cord injury (SCI) can lead to dramatic physiological changes which can be a factor in developing secondary health conditions and might be reflected in biomarker changes in this elevated risk group. We focused specifically on the endocrine and inflammation profile differences between SCI and able-bodied individuals (ABI). Our aim was to determine the differences in inflammatory markers and endocrine profiles between SCI and ABI. We systematically searched 4 electronic databases for relevant studies. Human observational (cross-sectional, cohort, case-control) studies that compared biomarkers of interest between SCI and ABI population were included. Weighted mean difference between SCI and ABI was calculated using random-effects models. Heterogeneity was computed using I2 statistic and chi-squared test. Study quality was evaluated through the Newcastle-Ottawa Scale. The search strategy yielded a total of 2,603 studies from which 256 articles were selected for full-text assessment. Sixty-two studies were included in the meta-analysis. SCI individuals had higher levels of pro-inflammatory C-reactive protein and IL-6 than ABI. Creatinine and 25-hydroxyvitamin D3 levels were lower in SCI than ABI. Total testosterone levels and IGF-1 were also found to be lower, while cortisol and leptin levels were higher in SCI when compared to ABI. Accordingly, meta-regression, subgroup analysis, and leave-one-out analysis were performed, however, they were only able to partially explain the high levels of heterogeneity. Individuals with SCI show higher levels of inflammatory markers and present significant endocrinological changes when compared to ABI. Moreover, higher incidence of obesity, diabetes, osteoporosis, and hypogonadism in SCI individuals, together with decreased creatinine levels reflect some of the readily measurable aspects of the phenotype changes in the SCI group. These findings need to be considered in anticipating medically related complications and personalizing SCI medical care

Needs and Research Priorities for Young People with Spinal Cord Lesion or Spina Bifida and Their Caregivers: A National Survey in Switzerland within the PEPSCI Collaboration.

The aim of this study was to describe the needs and research priorities of Swiss children/adolescents and young adults (from here, "young people") with spinal cord injury/disorder (SCI/D) or spina bifida (SB) and their parents in the health and life domains as part of the international Pan-European Pediatric Spinal Cord Injury (PEPSCI) collaboration. Surveys included queries about the satisfaction, importance, research priorities, quality of life (QoL), and characteristics of the young people. Fifty-three surveys with corresponding parent-proxy reports were collected between April and November 2019. The self-report QoL sum scores from young people with SCI/D and SB were 77% and 73%, respectively. Parent-proxy report QoL sum scores were lower, with 70% scores for parents of young people with SCI/D and 64% scores for parents of young people with SB. "Having fun", "relation to family members", and "physical functioning" were found to be highly important for all young people. "Physical functioning", "prevention of pressure injuries", "general health", and "bowel management" received the highest scores for research priority in at least one of the subgroups. As parents tend to underestimate the QoL of their children and young people prioritized research topics differently, both young peoples' and caregivers' perspectives should be included in the selection of research topics