Methodology and study population of the second Swiss national community survey of functioning after spinal cord injury.

STUDY DESIGN: Descriptive study of the second community survey of the Swiss Spinal Cord Injury Cohort Study (Survey 2017) conducted between 03/2017 and 03/2018. OBJECTIVES: To describe the methodology, recruitment results, characteristics of participants and non-participants, and non-response of the Survey 2017. SETTING: Community. METHODS: Description of the sampling strategy and sampling frame. Recruitment results and characteristics of participants and non-participants of the two Survey 2017 questionnaire modules were analyzed using descriptive statistics. Determinants of survey participation were examined using multivariable logistic regression, and the impact of non-response bias on survey results was evaluated using inverse-probability weighting. RESULTS: Out of 3959 persons who met the eligibility criteria, 1530 responded to module 1 (response rate 38.6%) and 1294 to module 2 (response rate 32.7%) of the Survey 2017. Of the 4493 invited persons, 1549 had participated in the first SwiSCI community survey conducted in 2012/2013. Of these, 1332 were invited to the Survey 2017 and 761 participated in module 1 (response rate 58.9%) and 685 in module 2 (response rate 53.1%). The majority of module 1 participants were male (71.2%, 95% CI: 68.9, 73.5), with a median age of 57 (IQR: 46.0, 67.0) years and incomplete paraplegia (41.9%, 95% CI: 39.3, 44.5). Survey non-response was higher in the oldest age group, among females, and those with tetraplegia. CONCLUSIONS: The design of the Survey 2017 was successful in recruiting a substantial proportion of the SCI source population in Switzerland. To counteract survey non-response, survey weights may be applied to subsequent analyses. SPONSORSHIP: none.

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.

Participation in People Living With Spinal Cord Injury in Switzerland: Degree and Associated Factors.

OBJECTIVE: To describe different domains of participation such as productive, leisure and social activities and describe sociodemographic and spinal cord injury (SCI)-related characteristics that are associated with participation in these domains in a large sample of community-dwelling individuals with SCI in Switzerland. DESIGN: Cross-sectional population-based survey within the Swiss Spinal Cord Injury Cohort Study. Participation in major life domains was measured by the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-Participation). Univariable unconditional analysis and unbiased recursive partitioning were used to identify the predominant associations of sociodemographic and SCI-related characteristics with multiple dimensions of participation. SETTING: Community. PARTICIPANTS: Swiss residents aged 16 years or older and living with traumatic or nontraumatic SCI (N=1549). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: The USER-Participation, a 32-item self-report questionnaire with 3 scales (Frequency, Restrictions, and Satisfaction) to assess key domains of participation (productive, leisure, social). RESULTS: Frequency (median 34.5 out of 100) in productive, outdoor leisure, and social activities was reduced with distinctive perceived restrictions in work and education, sports, and partner relationships. Domestic leisure activities (65.4%) and maintaining social relationships (76.1%) were those activities most often performed and with least perceived restrictions. Participants were generally satisfied with their current daily life activities. Lower scores across all participation scales were associated with more severe SCI, higher age, being female, not having a partner, and lower level of education. CONCLUSIONS: This study provides a thorough analysis of participation in major life domains of individuals with SCI in Switzerland. Different risk groups for reduced levels in participation in productive, leisure, and social activities were identified. This population-based evidence is instrumental to the better targeting of rehabilitation and policy interventions that aim to improve community participation.

Temporal Patterns of Infant Regulatory Behaviors in Relation to Maternal Mood and Soothing Strategies.

This study investigates the temporal patterning of infant self-regulatory behaviors (crying/fussing, sleeping) in relation to both infant (age, sex, regulatory problems) and maternal variables (soothing behaviors, mood). Self-regulatory and soothing behaviors were assessed in 121 mother-infant dyads (4-44 weeks) by the Baby's Day Diary at 5 min intervals over 3 days. Further infant characteristics and maternal mood were assessed by questionnaires (DASS, CES-D, STAI) and the Diagnostic Interview for the Assessment of Regulatory Problems in Infancy and Toddlerhood. Data were analyzed using generalized additive mixed models. Negative maternal mood was associated with a deviant course of crying/fussing during the day. Body contact was associated with reduced variability in the 24 h course of sleep. Mother-infant transactional processes-above and beyond known relationships with overall levels of crying/fussing and sleeping-might play out on the temporal dimension of infant regulatory behaviors.

The Cross-Cultural Societal Response to SCI: Health and Related Systems.

OBJECTIVE: The Learning Health System for Spinal Cord Injury (LHS-SCI) is an initiative aligned with the World Health Organization's (WHO) Global Disability Action Plan. Based on the outcomes of this initiative, countries will be able to shape their health systems to better respond to the needs of persons with SCI. This paper describes and compares the macroeconomic situation and societal response to SCI across 27 countries from all 6 WHO regions that will participate in the LHS-SCI initiative. METHODS: A concurrent mixed-methods study was conducted to identify key indicators that describe the situation of persons with SCI, the general societal response, the health and rehabilitation system, and the experience for a SCI person after discharge from inpatient rehabilitation. RESULTS: A strong correlation was found between the efficiency of a healthcare system and the amount a country invests in health. Higher availability of resources does not necessarily imply that unrestricted access to the healthcare system is warranted. Variations in the health systems were found for various domains of the health and rehabilitation systems. CONCLUSIONS: The evaluation and comparative analysis of the societal response to SCI raise the awareness of the need of more standardized data to identify current needs and gaps in the quality and access to SCI-specific health system.

Study Protocol of the International Spinal Cord Injury (InSCI) Community Survey.

OBJECTIVE: The Learning Health System for Spinal Cord Injury (LHS-SCI) is an initiative embedded in the World Health Organization's (WHO's) Global Disability Plan and requires the statistical collection of data on the lived experience of persons with SCI to consequently formulate recommendations and policies. The International Spinal Cord Injury (InSCI) community survey has been developed as an initial step to gain information about the lived experience of persons with SCI within and across diverse nations. DESIGN: InSCI is a multinational community survey based on the International Classification of Functioning, Disability and Health Core Sets for SCI and involves 28 countries from all six WHO regions. The study will be implemented in 2017. Overall aims, guiding principles on sampling strategies, data collection modes, and reminder management are described. CONCLUSIONS: InSCI will be the first survey to be conducted simultaneously in many countries and in all six WHO world regions that identifies the factors associated with functioning, health, and well-being of persons living with SCI. Expected results of the survey will be used for the basis of conducting stakeholder dialogs for policy reforms designed to improve the functioning, health maintenance, and well-being of persons with SCI.