Does cardiometabolic risk profile differ among individuals with traumatic and non-traumatic spinal cord injury (SCI): the evidence from the multicenter SCI cohort in Switzerland (SwiSCI).

STUDY DESIGN: Longitudinal study. OBJECTIVE: To explore whether individuals with traumatic spinal cord injury (TSCI) and non-traumatic SCI (NTSCI) experience different trajectories in changes of cardiometabolic disease (CMD) factors during initial rehabilitation stay. SETTING: Multicenter Swiss Spinal Cord Injury Cohort (SwiSCI) study. METHODS: Individuals without history of cardiovascular diseases were included. CMD factors and Framingham risk score (FRS) were compared between TSCI and NTSCI. Linear mixed models' analysis was employed to explore the trajectory in CMD factors changes over rehabilitation period and a multivariate linear regression analysis was used at discharge from inpatient rehabilitation to explore factors associated with CMD risk profile in TSCI and NTSCI. We performed age and sex-stratified analyses. RESULTS: We analyzed 530 individuals with SCI (64% with TSCI and 36% NTSCI). The median age was 53 years (IQR:39-64) with 67.9% (n = 363) of the study cohort being male. The median rehabilitation duration was 4.4 months (IQR 2.4-6.4). At admission to rehabilitation, FRS (9.61 vs. 5.89) and prevalence of hypertension (33.16% vs. 13.62%), diabetes (13.68% vs. 4.06%), and obesity (79.05% vs. 66.67%) were higher in NTSCI as compared to TSCI, No difference was observed in cardiometabolic syndrome between the groups (around 40% in both groups). Overall, we observed longitudinal increases in total cholesterol, HDL-C and HDL/total cholesterol ratio, and a decrease in fasting glucose over the rehabilitation period. No differences in longitudinal changes in cardiovascular risk factors were observed between TSCI and NTSCI. CONCLUSIONS: There was no deterioration in cardiometabolic risk factors over rehabilitation period, at discharge from initial rehabilitation stay. Both TSCI and NTSCI experienced high burden of cardiometabolic syndrome components with NTSCI experiencing more disadvantageous risk profile. The effectiveness of therapeutic and lifestyle/behavioral strategies to decrease burden of cardiometabolic disease and its components in early phase should be explored in future studies.

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.

Labor market costs for long-term family caregivers: the situation of caregivers of persons with spinal cord injury in Switzerland.

BACKGROUND: Family members are key in the provision of care to persons facing disability. To undertake the role as caregivers, they face many costs, being the setback in the labor market one of the most relevant. METHODS: We analyze comprehensive data from long-term family caregivers of persons with spinal cord injury (SCI) in Switzerland. Using information about their working situation before and after becoming caregivers, we estimated the reduction in working hours and the associated income loss. RESULTS: On average, family caregivers reduced their working hours by about 23% (8.4 h per week), which has a monetary value of CHF 970 per month (EUR 845). Women, older caregivers, and less educated caregivers have a much higher opportunity cost in the labor market: CHF 995 (EUR 867), CHF 1,070 (EUR 932), and CHF 1,137 (EUR 990) respectively. In contrast, family members who care for a person that works have a much lower impact on their working status, CHF 651 (EUR 567). Interestingly, the reduction in their working time is only a third of the extra work they face as caregivers. CONCLUSION: Health and social systems rely on the unpaid work of family caregivers. To guarantee their long-term involvement, family caregivers need to be recognized for their work and potentially compensated. Without family caregivers, it is very unlikely societies can cope with the increasing need for care, as professional services are limited and expensive.

Physical activity and cardiometabolic risk factors in individuals with spinal cord injury: a systematic review and meta-analysis.

Physical inactivity in individuals with spinal cord injury (SCI) has been suggested to be an important determinant of increased cardiometabolic disease (CMD) risk. However, it remains unclear whether physically active SCI individuals as compared to inactive or less active individuals have truly better cardiometabolic risk profile. We aimed to systematically review and quantify the association between engagement in regular physical activity and/or exercise interventions and CMD risk factors in individuals with SCI. Four medical databases were searched and studies were included if they were clinical trials or observational studies conducted in adult individuals with SCI and provided information of interest. The Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach was applied to rate the certainty of evidence. Of 5816 unique citations, 11 randomized clinical trials, 3 non-randomized trial and 32 cross-sectional studies comprising more than 5500 SCI individuals were included in the systematic review. In meta-analysis of RCTs and based on evidence of moderate certainty, physical activity in comparison to control intervention was associated with: (i) better glucose homeostasis profile [WMD of glucose, insulin and Assessment of Insulin Resistance (HOMA-IR) were - 3.26 mg/dl (95% CI - 5.12 to - 1.39), - 3.19 µU/ml (95% CI - 3.96 to - 2.43)] and - 0.47 (95% CI - 0.60 to - 0.35), respectively], and (ii) improved cardiorespiratory fitness [WMD of relative and absolute oxygen uptake relative (VO2) were 4.53 ml/kg/min (95% CI 3.11, 5.96) and 0.26 L/min (95% CI 0.21, 0.32) respectively]. No differences were observed in blood pressure, heart rate and lipids (based on evidence of low/moderate certainty). In meta-analysis of cross-sectional studies and based on the evidence of very low to low certainty, glucose [WMD - 3.25 mg/dl (95% CI - 5.36, - 1.14)], insulin [- 2.12 µU/ml (95% CI - 4.21 to - 0.03)] and total cholesterol [WMD - 6.72 mg/dl (95% CI - 13.09, - 0.34)] were lower and HDL [WMD 3.86 mg/dl (95% CI 0.66, 7.05)] and catalase [0.07 UgHb-1 (95% CI 0.03, 0.11)] were higher in physically active SCI individuals in comparison to reference groups. Based on limited number of cross-sectional studies, better parameters of systolic and diastolic cardiac function and lower carotid intima media thickness were found in physically active groups. Methodologically sound clinical trials and prospective observational studies are required to further elaborate the impact of different physical activity prescriptions alone or in combination with other life-style interventions on CMD risk factors in SCI individuals.

A Rasch-Based Comparison of the Functional Independence Measure and Spinal Cord Independence Measure for Outcome and Quality in the Rehabilitation of Persons with Spinal Cord Injury.

OBJECTIVE: The Functional Independence Measure (FIM™) and spinal cord injury (SCI)-specific Spinal Cord Independence Measure (SCIM) are commonly used tools for outcome measurement and quality reporting in rehabilitation. The objective of this study was to investigate the psychometric properties of FIM™ and SCIM and to equate the 2 scales. METHODS: First, content equivalence of FIM™ and SCIM was established through qualitative linking with the International Classification for Functioning, Disability and Health (ICF). Secondly, a Rasch analysis of overlapping contents determined the metric properties of the scales and provided the empirical basis for scale equating. Furthermore, a transformation table for FIM™ and SCIM was created and evaluated. SUBJECTS: Patients with SCI in Swiss inpatient rehabilitation in 2017-18. RESULTS: The ICF linking and a separate Rasch analysis of FIM™ restricted the analysis to the motor scales of FIM™ and SCIM. The Rasch analysis of these scales showed good metric properties. The co-calibration of FIM™ and SCIM motor scores was supported with good fit to the Rasch model. The operational range of SCIM is larger than for FIM™ motor scale. DISCUSSION: This study supports the advantage of using SCIM compared with FIM™ for assessing the functional independence of patients with SCI in rehabilitation.

The economic value of long-term family caregiving. The situation of caregivers of persons with spinal cord injury in Switzerland.

Health systems rely on the unpaid work of family caregivers. Nevertheless, demographic changes suggest a shortage of caregivers in the near future, which can constrain the long-term care policy in many countries. In order to find ways to support family caregivers, a primary effort would be to estimate how much their work is worth. This paper estimates the economic value of long-term family caregivers and how these costs would be shared by the health system, the social insurances and the cared-for person in the absence of informal caregivers. We use data of 717 family caregivers of persons with spinal cord injury (SCI) in Switzerland. We implemented the proxy-good method and estimated the market value of their work if performed by professional caregivers. Our results show that family caregivers in the sample spent an average of 27 hr per week caring for a relative for almost 12 years. This work, if undertaken by professional home care, has a market value of CHF 62,732 (EUR 56,455) per year. In the absence of family caregivers, these costs should be financed by the health insurances (47%), by the cared-for person (24%) and by the social insurances (29%). It is in the best interest of the cared-for person and of the healthcare and social systems to keep a sustained supply of family caregivers. One option is finding ways to recognise and compensate them for their work and make it less cumbersome.

Coping strategies of family caregivers in spinal cord injury: a qualitative study.

PURPOSE: To identify the coping strategies used by family caregivers of persons with spinal cord injury (SCI) in Switzerland in order to develop tailored support programs. MATERIALS AND METHODS: Purposive sample of >18 years participants, speaking an official Swiss language fluently, being family caregivers of persons with SCI for at least 4 years, and perceiving either a high or low burden in relation to caregiving. Data were collected through face-to-face semi-structured interviews (N = 22). Thematic analysis was performed. RESULTS: Four main coping strategies were identified: reappraisal, active acceptance, setting limits to the caregiver role, and seeking support. These strategies can be used one at a time or combined, and at different times of a caregiver pathway. Our analysis highlighted that caregivers need skills to implement these strategies (e.g., self-evaluation skills). CONCLUSIONS: Caregivers of persons with SCI develop cognitive coping strategies to make sense of the situation and establish a "new normal" and problem-focused coping strategies to deal with their new tasks and role. These strategies do not seem to be typical only of SCI caregivers. Hence, interventions that worked for caregivers in other fields could be adapted. Rehabilitation centers should systematically integrate programs targeted to caregivers into their offerings.IMPLICATIONS FOR REHABILITATIONHealthcare systems need to develop educational and support measures for both persons with a health condition and their caregivers.Caregivers should become long-term partners in rehabilitation and a regular and structured needs assessment should be offered.Interventions that worked for caregivers in other fields can be adapted to support also caregivers in SCI.Educational and support programs dedicated to caregivers should teach not only how to perform caregiving tasks but also how to balance between responding to the care recipient's needs and their own needs.

First contact of care for persons with spinal cord injury: a general practitioner or a spinal cord injury specialist?

BACKGROUND: Although general practitioners (GPs) are generally considered as the first point of contact for care, this may be different for persons with complex conditions, such as those with spinal cord injury (SCI). The objective of this study is to understand the differences in long-term care provision by GPs and SCI-specialists, by examining (1) the first contact of care for SCI health problems, (2) the morbidity profile and use of health-care services in relation to first contact, and (3) the factors associated with the choice of first contact. METHODS: In this cross-sectional study based on data derived from the Swiss Spinal Cord Injury Cohort Study Community Survey 2017, the main outcome measure was the reported first contact for SCI-specific care. This information was analysed using the chi-square test and logistic regression analysis of groups based on patient characteristics, use of health-care services and secondary health conditions assessed using the Spinal Cord Injury Secondary Conditions Scale (SCI-SCS). RESULTS: Out of 1294 respondents, 1095 reported their first contact for SCI-specific care; 56% indicated SCI-specialists and 44% specified GPs. On average, participants who first contacted a GP reported higher number of GP consultations (5.1 ± 5.2 vs. 3.9 ± 7.2), planned visits to ambulatory clinics (3.7 ± 7.3 vs. 3.6 ± 6.7) and hospital admissions (GP, 1.9 ± 1.7 vs. 1.5 ± 1.3), but lower number of visits to SCI-specialists (1.7 ± 1.8 vs. 2.6 ± 1.7) and of hospital days (22.8 ± 43.2 vs. 31.0 ± 42.8). The likelihood to contact a GP first was significantly higher in persons ≥75 years old (OR = 4.44, 95% CI = 1.85-10.69), Italian speakers (OR = 5.06, 95% CI = 2.44-10.47), had incomplete lesions (OR = 2.39, 95% CI = 1.71-3.35), experiencing pain (OR = 1.47, 95% CI = 1.04-2.09) or diabetes mellitus (OR = 1.85, 95% CI = 1.05-3.27), but lower for those situated closer to SCI centres (OR = 0.69, 95% CI = 0.51-0.93) or had higher SCI-SCS scores (OR = 0.92, 95% CI = 0.86-0.99). CONCLUSION: Age, language region, travel distance to SCI centres, lesion completeness, and occurrence of secondary conditions play a significant role in determining the choice of first contact of care, however there is still some unwarranted variation that remains unclear and requires further research.

Body Composition According to Spinal Cord Injury Level: A Systematic Review and Meta-Analysis.

The level of injury is linked with biochemical alterations and limitations in physical activity among individuals with spinal cord injury (SCI), which are crucial determinants of body composition. We searched five electronic databases from inception until 22 July 2021. The pooled effect estimates were computed using random-effects models, and heterogeneity was calculated using I2 statistics and the chi-squared test. Study quality was assessed using the Newcastle-Ottawa Scale. We pooled 40 studies comprising 4872 individuals with SCI (3991 males, 825 females, and 56 sex-unknown) in addition to chronic SCI (median injury duration 12.3 y, IQR 8.03-14.8). Individuals with tetraplegia had a higher fat percentage (weighted mean difference (WMD) 1.9%, 95% CI 0.6, 3.1) and lower lean mass (WMD -3.0 kg, 95% CI -5.9, -0.2) compared to those with paraplegia. Those with tetraplegia also had higher indicators of central adiposity (WMD, visceral adipose tissue area 0.24 dm2 95% CI 0.05, 0.43 and volume 1.05 L 95% CI 0.14, 1.95), whereas body mass index was lower in individuals with tetraplegia than paraplegia (WMD -0.9 kg/mg2, 95% CI -1.4, -0.5). Sex, age, and injury characteristics were observed to be sources of heterogeneity. Thus, individuals with tetraplegia have higher fat composition compared to paraplegia. Anthropometric measures, such as body mass index, may be inaccurate in describing adiposity in SCI individuals.

The challenges characterizing the lived experience of caregiving. A qualitative study in the field of spinal cord injury.

STUDY DESIGN: Qualitative exploratory study. OBJECTIVES: To explore the lived experience of SCI caregivers, with a focus on the challenges of their role. SETTING: Caregivers of people with SCI living in the community in Switzerland. METHODS: Data were collected through semi-structured interviews. Thematic analysis was performed. RESULTS: The sample included 22 participants (16 women, 15 life partners) with a mean age of 61 years who had been caregivers for an average of 18 years. Caregiving in SCI seemed to be characterized by two phases. The first phase was relatively short and was central to becoming a caregiver; it was marked by challenges related to adjusting to the role of caregiver (e.g., dealing with shock, feeling unprepared). The second phase is lifelong and is characterized by a number of recurrent challenges related to balancing caregiving and personal life (e.g., having to prioritize caregiving over personal wishes, negotiating tasks and workload). Challenges related to lacking appropriate housing, facing financial uncertainty and dealing with bureaucracy were noted during both phases. Caregivers had to deal with these challenges to stay in step with life changes and newly emerging needs. CONCLUSIONS: Informal caregivers have a major role in supporting people with SCI. But their needs are not static. Any strategy to empower them has to adapt to an evolving role characterized by multiple tasks and challenges. A functional relationship between caregivers and care recipients is based on the recognition of their individualities and the different phases of adaptation, which is also an enriching process.

Utilization of health care providers by individuals with chronic spinal cord injury.

STUDY DESIGN: Questionnaire survey conducted in 2017 as part of the Swiss Spinal Cord Injury Cohort Study (SwiSCI). OBJECTIVES: To elucidate the use of outpatient health care providers by individuals with chronic spinal cord injury in a situation of free choice and ample supply. SETTING: Community, nationwide. METHODS: The frequency of visits was compared to that of a survey conducted five years earlier. Using regression tree analysis, the characteristics of individuals with extensive use of health care providers' services were investigated. Substitution effects, where health care users replace one provider type by another, were quantified using likelihood ratios for positive outcomes. RESULTS: The questionnaire was returned by 1,294 persons (response rate 33%). Participants reported visits to 14 different health care providers within the previous 12 months. Most often visited was the general practitioner (GP) by 82%. Older individuals used fewer health care providers than younger participants. Individuals with spasticity and females visited a broader variety of health care providers than the average user. The participants used fewer providers than they did five years ago. Health care users were not found to be substituting one provider type with another. CONCLUSIONS: Individuals with spinal cord injury in Switzerland use a wide array of medical service providers. All providers were used complementary to each other without redundancies between providers. The use of providers is driven by health-related factors and gender. Old age was not as much a driver for high utilization as described in other settings.

Factors influencing specialized health care utilization by individuals with spinal cord injury: a cross-sectional survey.

STUDY DESIGN: Cross-sectional observational study using data from the second community survey of the Swiss Spinal Cord Injury Cohort Study (Survey 2017) conducted between 03/2017 and 03/2018. OBJECTIVES: To identify facilitators of and barriers to utilizing SCI-specialized outpatient clinic and inpatient care by individuals with spinal cord injury (SCI). SETTING: Community. METHODS: Multivariable logistic regression was used to identify factors influencing (1) the attendance at annual check-ups at SCI-specialized treatment facilities, (2) the utilization of SCI-specialized outpatient clinic care by those who utilized any outpatient clinic care, and (3) the utilization of SCI-specialized inpatient care by those who were hospitalized. Multiple imputation was used to account for missing data. RESULTS: Out of 3959 eligible individuals, 1294 completed the questionnaire (response rate 33%). In the last 12 months, 51% of study participants attended the annual check-up, 33% of outpatient clinic care users utilized SCI-specialized outpatient clinic care, and 44% of those who were hospitalized were hospitalized at a SCI center. Annual check-ups were attended less by women, the elderly, and those with nontraumatic SCI. SCI-specialized outpatient clinic care was less likely to be utilized when individuals with SCI were living with cancer, lived farther away from SCI-specialized treatment facilities or in a minority language region. Specialized inpatient care was less likely to be utilized by women and those with incomplete lesions. CONCLUSIONS: SCI-specialized outpatient clinic care must be provided near the residence of individuals with SCI, otherwise non-specialized care is utilized. The reasons why women utilize SCI-specialized care less frequently than men merits further investigation.

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.

Professional home care and the objective care burden for family caregivers of persons with spinal cord injury: Cross sectional survey.

Background: Spinal cord injury imposes high demands on family caregivers providing long-term care. Professional home care has been suggested for family caregivers' relief. However, it is not clear whether professional home care can achieve the goal of relieving family caregivers. Objective: To quantify to what extent professional home care was used as a relief or replacement for family caregivers, using the case of care for persons with spinal cord injury in Switzerland. Design: Cross-sectional survey. Setting: Community setting in Switzerland. Participants: 717 family caregivers of persons with spinal cord injury living at home. Methods: Linear regression analyses were applied to investigate the relationship between care hours by family caregivers and the use of professional home care. Percentages of family caregivers that assisted in different tasks, and their time investment in the tasks, were contrasted between those with and without professional home care. Multiple logistic regression compared the likelihood of specific tasks being assisted by family caregivers dependent on whether professional home care was in place. The reasons given for not hiring more professional home care despite unmet needs were described with relative frequencies. Results: Adjusted for non-utilization, care hours of family caregivers had a positive, but insignificant, relationship with the hours of professional home care (Coef. = 0.21, 95% CI: -0.05-0.47). Assistance in activities of daily living was more frequent in family caregivers with professional home care. Eating and drinking assistance was provided by 47% of family caregivers with professional home care (versus 18% of those without professional home care). The most frequent task in instrumental activities of daily living was housekeeping (88% of family caregivers with professional home care and 83% of those without professional home care). After adjusting for characteristics of the caregivers and care recipients, significantly lower odds of assistance were found in washing feet (OR 0.39, 95% CI: 0.22-0.71), transferring to the toilet or bathtub (OR 0.53, 95% CI: 0.29-0.96), and climbing stairs (OR 0.26, 95% CI: 0.09-0.69). Higher odds of assistance were found in respiratory care (OR 2.22, 95% CI: 1.04-4.74) and bladder management (OR 1.99, 95% CI: 1.05-3.76) with professional home care in place. No significant difference was found in other tasks. Conclusion: Professional home care is a strong support to caregivers in high care demand situations, but it is not a replacement. The present study recommends further relief, empowerment, and acknowledgement for family caregivers.What is already known about the topic?• Evidence has shown that family caregivers replace paid domestic help or postpone the use of professional home care in the elderly population.• The large involvement translates into highly stressed family caregivers, for whom professional home care could serve as a relief.• Family caregivers reported low utilization of professional home care and some frustration with its use.What this paper adds• Family caregivers' time investment and involvement in tasks were adjusted based on the care demand of the care recipients.• Despite the presence of professional home care, family caregivers still invested a considerable amount of time and were heavily involved in activities of daily living.• Professional home care provided strong support for family caregivers in instances of higher care demand.

Opportunities and Challenges of a Self-Management App to Support People With Spinal Cord Injury in the Prevention of Pressure Injuries: Qualitative Study.

BACKGROUND: Mobile health applications can offer tailored self-management support to individuals living with chronic health conditions. However, there are several challenges to the adoption of these technologies in practice. Co-design is a promising approach to overcoming some of these challenges by enabling the development of solutions that meet the actual needs and preferences of the relevant stakeholder groups. OBJECTIVE: Taking spinal cord injury as a case in point, the overall objectives of this study were to identify the perceived benefits of a co-designed self-management app that could promote its uptake and to explore the factors that may impede adoption. METHODS: We adopted a qualitative research approach guided by the Technology Acceptance Model. Data were collected through semistructured interviews with individuals with spinal cord injury (n=15) and two focus groups with health care professionals specialized in spinal cord injury (n=7, n=5). Prior to the interviews and focus groups, study participants were given time to explore the app prototype. All interviews were transcribed verbatim and analyzed using inductive thematic analysis. RESULTS: Findings of our analysis indicate that study participants perceived the app prototype as potentially useful for supporting individuals with spinal cord injury in preventing pressure injuries. In particular, we identified three concrete use cases highlighting the benefits of the app for different audiences: (1) a companion for newly injured individuals, (2) an emergency kit and motivational support, and 3) a guide for informal caregivers and family members. We also uncovered several challenges that might impede the adoption of the self-management app in practice, including (1) challenges in motivating individuals to use the app, (2) concerns about the misuse and abuse of the app, and (3) organizational and maintenance challenges. CONCLUSIONS: This study adds to a growing body of research that investigates individuals' adoption and nonadoption behavior regarding mobile health solutions. Building on earlier work, we make recommendations on how to address the barriers to the adoption of mobile health solutions identified by this study. In particular, there is a need to foster trust in mobile health among prospective users, including both patients and health care professionals. Moreover, increasing personal relevance of mobile health solutions through personalization may be a promising approach to promote uptake. Last but not least, organizational support also plays an instrumental role in mobile health adoption. We conclude that even though co-design is promoted as a promising approach to develop self-management tools, co-design does not guarantee adoption. More research is needed to identify the most promising strategies to promote the adoption of evidence-based mobile health solutions in practice.

Living situation of family caregivers of persons with spinal cord injury.

OBJECTIVE: To describe the living situation of family caregivers of persons with spinal cord injury. DESIGN: Cross-sectional questionnaire. SUBJECTS: Primary family caregivers of persons with chronic spinal cord injury in Switzerland. METHODS: Cross-sectional study of family caregivers of persons with spinal cord injury. For comparison, the study population was matched to family care-givers of persons dealing with long-term health conditions in the general population, using a propensity-score based algorithm. RESULTS: A total of 717 family caregivers participat-ed in the survey (35% response rate). Participants were mostly female (72%), mean age 57 years, and had spent approximately 13 years caring for their relative. A mean of 21 h/week was spent providing care and assistance. The vast majority of family care-givers reported coping well with their situation. However, support from public services was deemed inadequate. Compared with family caregivers in the general population, family caregivers of persons with spinal cord injury performed more caring tasks and reported a slightly lower quality of life. CONCLUSION: Family caregivers of persons with spinal cord injury are self-reliant to cope with their situation, but report discontent with public support ser-vices. The healthcare system could provide alternative support measures, such as direct financial compensation.

Co-designing a Self-Management App Prototype to Support People With Spinal Cord Injury in the Prevention of Pressure Injuries: Mixed Methods Study.

BACKGROUND: Spinal cord injury is a complex chronic health condition that requires individuals to actively self-manage. Therefore, an evidence-based, self-management app would be of value to support individuals with spinal cord injury in the prevention of pressure injuries. OBJECTIVE: The main objectives of this study were to (1) establish a co-design approach for developing a high-fidelity prototype app for the self-management of individuals with spinal cord injury, (2) design the prototype that resulted from this process, and (3) conduct the first usability assessment of the prototype app. METHODS: We adopted a co-design approach to develop an evidence-based app prototype. Starting from a preliminary content model (based on clinical guidelines for the prevention of pressure injuries) and three research-based user personas, we conducted an ideation workshop involving individuals with spinal cord injury and health care professionals. The ideation workshop formed the basis for two consecutive design sprints. The result of this co-design phase was an interactive app prototype. The prototype was evaluated in two rounds of usability testing (N=4 and N=15, respectively) using a combination of qualitative and quantitative methods. RESULTS: The co-design process resulted in a high-fidelity prototype with two key components: a self-management component and a communication component. The final prototype included a combination of features to support individuals with spinal cord injury in the prevention of pressure injuries, namely a smart camera, pressure injury diary, expert consultation, reminders, and knowledge repository. Findings of the usability testing showed that most participants navigated the app fluently with little back and forth navigation and were able to successfully complete a set of assigned tasks. These positive results are supported by the average system usability score achieved (78.5/100; range 47.5-95.0) and our qualitative analysis of the semistructured interviews. Despite an overall positive evaluation of the app prototype, we identified areas for improvement (eg, inclusion of a search function). CONCLUSIONS: Individuals with spinal cord injury often need to navigate competing interests and priorities, paired with uncertainty about the accuracy and relevance of clinical recommendations. Understanding what matters to individuals with spinal cord injury can help guide the design of behavioral interventions that are useful and acceptable to these individuals in their daily lives. This study shows that involving individuals with spinal cord injury and health care professionals in co-designing a self-management app can foster knowledge cocreation at the intersection of lived experience, medical expertise, and technical solutions.

Cohort Profile of the International Spinal Cord Injury Community Survey Implemented in 22 Countries.

OBJECTIVES: To detail the methodological features of the first International Spinal Cord Injury (InSCI) Community Survey by describing recruitment and data collection procedures, and to report on the recruitment results and basic characteristics of participants by country and income setting. DESIGN: Cross-sectional survey. SETTING: Community setting in 22 countries representing all 6 World Health Organization regions. PARTICIPANTS: Individuals (N=12,591) with traumatic or non-traumatic spinal cord injury (SCI) aged over 18 years. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Recruitment and data collection procedures, recruitment results, and basic sociodemographic and lesion characteristics of participants. RESULTS: Eight countries used predefined sampling frames and 14 countries applied convenience sampling for recruitment. Most countries recruited participants through specialized rehabilitation facilities, patient organizations, or acute and general hospitals. Modes of approaching potential participants depended on the sampling strategy and multiple response modes were offered to maximize participation. Contact rates ranged from 33% to 98%, cooperation rates ranged from 29% to 90%, and response rates ranged from 23% to 54%. The majority of participants were men (73%), the median age was 52 years (interquartile range, 40-63y), 60% had a partner, 8% reported that they were born in another country than where they were currently residing, and the median length of education was 12 years (interquartile range, 9-15y). Paraplegia was the main diagnosis (63%), traumatic etiologies were the major cause of injury (81%), and the median time since injury (TSI) was 9 years (interquartile range, 4-19y). Compared with participants from lower income settings, participants from higher income settings were over-represented and, in general, were older, more often diagnosed with tetraplegia, had a longer TSI, higher education, and were more often born in a country different than their current residence country. CONCLUSIONS: The successful implementation of the InSCI survey enables the comparison of the situation of individuals with SCI around the world and constitutes a crucial starting point for an international learning experience.

Selecting Evidence-Based Content for Inclusion in Self-Management Apps for Pressure Injuries in Individuals With Spinal Cord Injury: Participatory Design Study.

BACKGROUND: Technological solutions, particularly mobile health (mHealth), have been shown to be potentially viable approaches for sustaining individuals' self-management of chronic health conditions. Theory-based interventions are more successful, as evidence-based information is an essential prerequisite for appropriate self-management. However, several reviews have shown that many existing mobile apps fail to be either theoretically grounded or based on evidence. Although some authors have attempted to address these two issues by focusing on the design and development processes of apps, concrete efforts to systematically select evidence-based content are scant. OBJECTIVE: The objective of this study was to present a procedure for the participatory identification of evidence-based content to ground the development of a self-management app. METHODS: To illustrate the procedure, we focused on the prevention and management of pressure injuries (PIs) in individuals with spinal cord injury (SCI). The procedure involves the following three steps: (1) identification of existing evidence through review and synthesis of existing recommendations on the prevention and self-management of PIs in SCI; (2) a consensus meeting with experts from the field of SCI and individuals with SCI to select the recommendations that are relevant and applicable to community-dwelling individuals in their daily lives; and (3) consolidation of the results of the study. RESULTS: In this case study, at the end of the three-step procedure, the content for an mHealth intervention was selected in the form of 98 recommendations. CONCLUSIONS: This study describes a procedure for the participatory identification and selection of disease-specific evidence and professional best practices to inform self-management interventions. This procedure might be especially useful in cases of complex chronic health conditions, as every recommendation in these cases needs to be evaluated and considered in light of all other self-management requirements. Hence, the agreement of experts and affected individuals is essential to ensure the selection of evidence-based content that is considered to be relevant and applicable.

Information seeking behavior and perceived health literacy of family caregivers of persons living with a chronic condition. The case of spinal cord injury in Switzerland.

OBJECTIVE: To examine the information seeking behavior and health literacy of caregivers of individuals living with spinal cord injury in Switzerland and their impact on the caregiving experience. METHODS: Nationwide survey of family caregivers of people with spinal cord injury (N = 717). Caregivers aged 18+ who assisted with activities of daily living were included. Self-reported information seeking behavior, including topics, preferred sources, and health literacy were assessed and analyzed. RESULTS: Health professionals were the most trusted source of information. Among information-seekers, higher health literacy levels were shown to be associated with lower subjective caregiver burden and, in turn, with higher caregivers' satisfaction with own health. CONCLUSION: Caregivers use information on different topics and coming from different sources. In order for information to improve the caregiving experience, however, caregivers need health literacy skills to make sense of it. PRACTICE IMPLICATIONS: Building health literacy is a promising approach to support caregivers in their activities, reduce their subjective burden, and even to improve their health. Interventions should consider involving health professionals, as the most trusted source of information, and address both health-related and more practical issues.