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

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

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

Peran Ayah dalam Praktik Menyusui

Background: In Indonesia the prevalence of exclusive breastfeeding in 2007 was 32%. Although breastfeeding is a common practice, exclusive breastfeeding remains unpracticed optimally due to some influential factors. One factor to be considered here is father\u27s role. However, until recently studies regarding father\u27s role in breastfeeding practice have not been fully explored in Indonesia. In Bukittinggi exclusive breastfeeding rate was 63,5% in 2008.Objective: To investigate the relationship between the father\u27s role and breastfeeding practices in Bukittinggi Municipality.Method: This was an observational study with cross-sectional study design. Subjects were families with babies aged 0 – 6 months using non probability sampling. The independent variable was the father\u27s role and the dependent variable was breastfeeding practices. Meanwhile, the extraneous variables included knowledge, attitude, mother\u27s occupation; father\u27s working hours in a day, and income. The data were analyzed using univariable analysis, bivariable analysis with chi-square test, and multivariable analysis with logistic regression.Results: The result of multivariable analysis showed that there was a significant relationship between the father\u27s role and breastfeeding practice, by including father\u27s knowledge, mother\u27s knowledge, father\u27s attitude and mother\u27s attitude that could predict by 12% (RP= 1.93; 95% CI= 1.36 – 2.74).Conclusion: The prevalence of exclusive breastfeeding practices in the supporting father group was greater than in the group that non-supporting father. The recommendations are that fathers should be targeted audience in the breastfeeding promotion

Functional connectivity and amplitude of low-frequency fluctuations changes in people with complete subacute and chronic spinal cord injury.

After spinal cord injury (SCI), reorganization processes and changes in brain connectivity occur. Besides the sensorimotor cortex, the subcortical areas are strongly involved in motion and executive control. This exploratory study focusses on the cerebellum and vermis. Resting-state functional magnetic resonance imaging (fMRI) was performed. Between-group differences were computed using analysis of covariance and post-hoc tests for the seed-based connectivity measure with vermis and cerebellum as regions of interest. Twenty participants with complete SCI (five subacute SCI, 15 with chronic SCI) and 14 healthy controls (HC) were included. Functional connectivity (FC) was lower in all subjects with SCI compared with HC in vermis IX, right superior frontal gyrus (pFDR = 0.008) and right lateral occipital cortex (pFDR = 0.036). In addition, functional connectivity was lower in participants with chronic SCI compared with subacute SCI in bilateral cerebellar crus I, left precentral- and middle frontal gyrus (pFDR = 0.001). Furthermore, higher amplitude of low-frequency fluctuations (ALFF) was found in the left thalamus in individuals with subacute SCI (pFDR = 0.002). Reduced FC in SCI indicates adaptation with associated deficit in sensory and motor function. The increased ALFF in subacute SCI might reflect reorganization processes in the subacute phase