Ageing, functioning patterns and their environmental determinants in the spinal cord injury (SCI) population: A comparative analysis across eleven European countries implementing the International Spinal Cord Injury Community Survey.

BACKGROUND: As the European population with Spinal Cord Injury (SCI) is expected to become older, a better understanding of ageing with SCI using functioning, the health indicator used to model healthy ageing trajectories, is needed. We aimed to describe patterns of functioning in SCI by chronological age, age at injury and time since injury across eleven European countries using a common functioning metric, and to identify country-specific environmental determinants of functioning. METHODS: Data from 6'635 participants of the International Spinal Cord Injury Community Survey was used. The hierarchical version of Generalized Partial Credit Model, casted in a Bayesian framework, was used to create a common functioning metric and overall scores. For each country, linear regression was used to investigate associations between functioning, chronological age, age at SCI or time since injury for persons with para- and tetraplegia. Multiple linear regression and the proportional marginal variance decomposition technique were used to identify environmental determinants. RESULTS: In countries with representative samples older chronological age was consistently associated with a decline in functioning for paraplegia but not for tetraplegia. Age at injury and functioning level were associated, but patterns differed across countries. An association between time since injury and functioning was not observed in most countries, neither for paraplegia nor for tetraplegia. Problems with the accessibility of homes of friends and relatives, access to public places and long-distance transportation were consistently key determinants of functioning. CONCLUSIONS: Functioning is a key health indicator and the fundament of ageing research. Enhancing methods traditionally used to develop metrics with Bayesian approach, we were able to create a common metric of functioning with cardinal properties and to estimate overall scores comparable across countries. Focusing on functioning, our study complements epidemiological evidence on SCI-specific mortality and morbidity in Europe and identify initial targets for evidence-informed policy-making.

Robot-assisted laparoscopic cystectomy with non-continent urinary diversion for neurogenic lower urinary tract dysfunction: Midterm outcomes.

OBJECTIVES: The aim of this study was to assess midterm functional outcomes and complications of robot-assisted laparoscopic cystectomy with non-continent urinary diversion in patients with neurogenic lower urinary tract dysfunction. MATERIALS AND METHODS: We performed a retrospective single center study including all patients who underwent robot-assisted laparoscopic cystectomy with non-continent urinary diversion between January 2008 and December 2018 for neurogenic lower urinary tract dysfunction. Perioperative data, early and late complications, reoperation rate, renal function, and patient satisfaction (PGI-I) were evaluated. RESULTS: One hundred and forty patients were included (70 multiple sclerosis, 37 spinal cord injuries, 33 others) with a median follow-up of 29 months (12-49). The main indication for surgery was an inability to perform intermittent self-catheterization (n = 125, 89%). The early complication rate (<30 days) was 41% (n = 58), including 72% (n = 45) minor complications (Clavien I-II) and 29% (n = 17) major complications (Clavien III-V). Three patients died in the early postoperative period. Late complications appear in 41% (n = 57), with 9% (n = 13) being ureteroileal anastomotic stricture. The overall reintervention rate was 19% (n = 27), mainly for lithiasis surgery. Pre- and postoperative renal function were comparable. Most of patients reported an improvement in their quality of life following their surgery (PGI-I 1-2). CONCLUSION: Robot-assisted laparoscopic cystectomy with non-continent urinary diversion may be of particular interest in patients with neurogenic lower urinary tract dysfunction who are unable to benefit from conservative treatment, as it provides midterm protection of the upper urinary tract and an improvement in quality of life.

Organizational ethics in urgent transfers of severely disabled people to intensive care units - a qualitative study.

PURPOSE: Urgent transfers of severely impaired patients with chronic neurological disability (PwND) from a neurological physical and rehabilitation medicine (nPRM) to an intensive care unit (ICU) or an emergency room (ER) served as the basis for this study. We hypothesized that human and structural factors interfered with but were not directly related to the acute context. METHODS: We decided to use a qualitative methodology, based on in-depth interviews with 16 ICU/ER physicians. We used mixed bottom-up and top-down methods. We interpreted our data using a thematic approach based on the key principles of grounded theory, which were modified with consideration of the literature. RESULTS: Three main domains emerged. The impact of the clinical setting notably implied the patient's clinical typology between the acute event and the chronic background, but also bed availability. Key elements of the telephone negotiation were confidence and perceived usefulness of the transfer. Finally, the otherness of some categories of patients, transferred with more difficulty, involved those with cognitive impairment. CONCLUSIONS: The existence of healthcare pathways for many years has created an organizational culture between departments of nPRM and ICUs. But urgent transfers also imply organizational ethics, as a balance should be struck between utility and equity. IMPLICATIONS FOR REHABILITATIONStructural and human factors interfere in urgent transfers, involving the settings within health pathways, the key elements of negotiation to get confidence and a perceived utility of transfer, and certain categories of people, especially those with cognitive impairment.Transfers that imply negotiation between practitioners from physical and rehabilitation medicine and intensive care unit departments, lead to a need of organizational ethics, as a balance should be struck between the principles of utility and equity.The development of facilitating tools such as a commitment charter is of paramount importance as it can support ethical decision-making.

Physical Health Conditions in Persons with Spinal Cord Injury Across 21 Countries Worldwide.

OBJECTIVES: To describe the 3-month prevalence and correlates of self-reported physical health conditions in persons with spinal cord injury (SCI) worldwide. STUDY DESIGN: Multinational cross-sectional survey. SUBJECTS: Community-living persons with traumatic or non-traumatic SCI aged >18 years from 21 countries representing all the 6 World Health Organization regions. METHODS: The study used data from 11,058 participants in the International SCI Community Survey (InSCI). The survey, based on the International Classification of Functioning, Disability and Health (ICF) Core Sets for SCI, was conducted in 2017-19 simultaneously in the participating countries. The health conditions were reported on a modified version of the SCI Secondary Conditions Scale. RESULTS: Overall, 95.8% of the participants reported having experienced 1 or more health problems secondary to SCI. Having pain was the most prevalent problem (77.3%), followed by spasticity/muscle spasms (73.5%) and sexual dysfunction (71.3%), and the least prevalent was respiratory problems (28.8%). The participants reported a mean of 7.4 concurrent health conditions. Unmet healthcare needs, being a smoker, being a female, having a complete lesion, and a traumatic injury exhibited significant associations with comorbidity. CONCLUSION: Physical health problems secondary to SCI are extremely common worldwide and demand investment in appropriate management, medical care and preventative measures.

Adherence to long-term medical follow-up: A qualitative, experience-focused study of people with spinal cord injury.

BACKGROUND: Scientific evidence indicates the presence of secondary conditions (such as pressure injuries) after spinal cord injury (SCI). Treatment methods focusing on the management of paraplegia and tetraplegia include systematic preventive follow-up. These advances have significantly improved the functional and vital prognosis of people with SCI, but some people may not have access to these specialized organizations or may not adhere closely to this medicalized vision. We used a narrative approach to explore the perceptions of people with SCI to better understand their adherence to follow-up. OBJECTIVES: We aimed to determine the "common denominators" that lead to adherence or non-adherence to long-term follow-up after SCI. METHODS: People with SCI who had completed their first rehabilitation period for > 1 year were included with regard to 2 variables: 1) an actual medical follow-up or not and 2) a history of pressure injury or not. A review of the literature was used as preparation for semi-directive interviews, which were prospectively analysed by using qualitative analysis software. Thematic saturation was reached at 28 interviews, and 32 interviews were ultimately completed. RESULT: Three main areas concerning participants' perceptions emerged: people's readiness, appropriation and modulation of the systematic follow-up. We developed a broad conceptual framework representing follow-up and the promotion of the long-term health of people with SCI from their perspectives. CONCLUSIONS: The medical environment should ensure that people with SCI are ready to actively consider the implementation of prevention strategies and should take into account their ability to establish their own truth, to integrate various life stages after SCI and to negotiate systematic follow-up. The implementation of data about functioning should be conducted using the concept of the Learning Health System.

Use of multilayer silicone foam dressings as adjuvant therapy to prevent pressure injuries.

Despite progress in the prevention of pressure injuries (PIs), they remain a challenging public health problem because of their frequency and morbidity. Protection of the skin by multilayer silicone foam dressings may be an adjuvant measure to prevent PIs in high-risk patients. Despite the available clinical data and published recommendations on this measure, caregivers face difficulties in identifying patients who would benefit from this adjuvant measure. The objective of this work was to define the profiles of high-risk patients who would benefit optimally from this measure in combination with basic preventive procedures. This consensual expert opinion was drawn up using two methods: the Nominal Group Technique with eight medical and paramedical experts, and the Delphi process with 16 experts. The bases for this expert consensual opinion were a formal search and analysis of the published literature regarding evidence on the prevention of PIs using multilayer silicone foam dressings. The consensual expert opinion reported here addresses five proposals mostly intended to define patients who would benefit from the use of a multilayer silicone foam dressing (≥4 layers) to prevent PIs (sacrum and heels).

Socioeconomic status and social relationships in persons with spinal cord injury from 22 countries: Does the countries' socioeconomic development moderate associations?

BACKGROUND: Social relationships are powerful determinants of health and inequalities in social relationships across socioeconomic status (SES) groups may contribute to social inequalities in health. This study investigates inequalities in social relationships in an international sample of persons with spinal cord injury and explores whether social gradients in relationships are moderated by the countries' socioeconomic development (SED). METHODS: Data from 12,330 participants of the International SCI Community Survey (InSCI) performed in 22 countries were used. We regressed social relationships (belongingness, relationship satisfaction, social interactions) on individual SES (education, income, employment, financial hardship, subjective status) and countries' SED (Human Development Index) using multi-level models (main effects). To test potential moderation of the SED, interaction terms between individual SES and countries' SED were entered into multi-level models. RESULTS: Paid work, absence of financial hardship and higher subjective status were related to higher belongingness (OR, 95% CI: 1.50, 1.34-1.67; 1.76, 1.53-2.03; 1.16, 1.12-1.19, respectively), higher relationship satisfaction (OR, 95% CI: 1.28, 1.15-1.42; 1.97, 1.72-2.27; 1.20, 1.17-1.24, respectively) and fewer problems with social interactions (Coeff, 95% CI: 0.96, 0.82-1.10; 1.93, 1.74-2.12; 0.26, 0.22-0.29, respectively), whereas associations with education and income were less consistent. Main effects for countries' SED showed that persons from lower SED countries reported somewhat higher relationship satisfaction (OR, 95% CI: 0.97, 0.94-0.99) and less problems with social interactions (Coeff, 95% CI: -0.04, -0.09- -0.003). Results from moderation analysis revealed that having paid work was more important for relationships in lower SED countries, while education and subjective status were more important for relationships in higher SED countries (interaction terms p<0.05). CONCLUSION: Social relationships in persons with spinal cord injury are patterned according to individual SES and the countries' SED and larger socioeconomic structures partly moderate associations between individual SES and social relationships.

Health inequalities and income for people with spinal cord injury. A comparison between and within countries.

Income and health are related in a bi-directional manner, whereby level of income affects health and vice versa. People in poorer households tend to experience worse health status and higher mortality rates than people in wealthier households, and, at the same time, having poor health could restrict workability leading to less income. This gap exists in almost every country, and it is more pronounced in more unequal countries and in vulnerable populations, such as people experiencing disability. The goal of this paper is to estimate the health-income gap in people with a Spinal Cord Injury (SCI), which is a chronic health condition often associated with multiple comorbidities that leads to disability. As data on mortality is inexistent, to estimate the health-income gap for persons with SCI, this paper uses two health outcomes: the number of years a person has lived with the injury, and a comorbidity index. Data was obtained from the International Spinal Cord Injury survey (InSCI), which is the first worldwide survey on community-dwelling persons with SCI. To compare across countries, the health outcomes were adjusted through hierarchical models, accounting for country fixed-effects, individual characteristics such as age and gender, and injury characteristics (cause, type and degree). Our results suggest that for the years living with SCI, the gap varies from 1 to 6 years between the lowest and the highest income groups. The main driver of such a difference is the cause of injury, where injuries caused by work accidents showed the biggest gap. Similarly, for the comorbidity index, persons with SCI in poorer deciles reported significantly more comorbidities, forty times more, than people in richer deciles.

The functioning of social support in long-term prevention after spinal cord injury. A qualitative study.

BACKGROUND: The impact of social support on the long-term condition after a spinal cord injury (SCI) varies across studies mainly involving self-report questionnaires. OBJECTIVE: We aimed to establish the common factors associated with social support leading individuals with an SCI to the effective prevention of secondary complications, including via adherence to medical follow-up. METHODS: Inclusion criteria were a history of acquired SCI of any etiology, wheelchair use, and age≥18 years at the time of the study. Participants should have completed their initial rehabilitation program in France≥1 year earlier and were also enrolled according to 2 related study variables: routine medical follow-up (patients were or were not followed up) and the medically supervised reporting of a pressure ulcer after the initial rehabilitation session (0 or≥1 pressure ulcers). We performed a preparatory quantitative and qualitative literature review to identify factors affecting long-term follow-up after SCI, then adopted a narrative design with semi-structured interviews, transcribed and analyzed progressively by using qualitative analysis software. RESULTS: We included 32 participants. We categorized our results based on the knowledge, attitudes, beliefs and practices of participants with respect to pressure ulcer prevention and long-term medical follow-up. Our narrative approach allowed us to identify 3 main domains relevant to social support: reciprocity, self-management and timing related to social support. CONCLUSIONS: Our study showed social support as a dynamic process, a reciprocal phenomenon evolving in variations over time. These findings should be central to short- and long-term therapeutic education programs for patients and for people providing social support. Effective changes should also be implemented through the concept of the Learning Health System.

Partnership Status and Living Situation in Persons Experiencing Physical Disability in 22 Countries: Are There Patterns According to Individual and Country-Level Characteristics?

Persons experiencing disabilities often face difficulties to establish and maintain intimate partnerships and the decision whether to live alone or with others is often not their own to make. This study investigates whether individual and country-level characteristics predict the partnership status and the living situation of persons with spinal cord injury (SCI) from 22 countries. We used data from 12,591 participants of the International SCI Community Survey (InSCI) and regressed partnership status and living situation on individual (sociodemographic and injury characteristics) and country-level characteristics (Human Development Index, HDI) using multilevel models. Females, younger persons, those with lower income, without paid work, more severe injuries, and longer time since injury were more often single. Males, older persons, those with higher income, paid work, less severe injuries, and those from countries with higher HDI more often lived alone. This study provides initial evidence for the claim that the partnership status and the living situation of people with SCI are influenced by sociodemographic and socioeconomic factors and are not merely a matter of choice, in particular for those with severe injuries.

Surgical management of lower limb fractures in patients with spinal cord injury less associated with complications than non-operative management: A retrospective series of cases.

OBJECTIVES: To evaluate the difference in terms of overall complications between surgical and non-surgical management of lower limb fractures in patients with chronic spinal cord injury (SCI). DESIGN: A 13-year retrospective study including patients with chronic spinal cord lesion admitted for sublesional lower limb fractures. SETTING: University hospital SCI reference departments (Rehabilitation department and orthopedic department). PARTICIPANTS: Forty patients with SCI were included, 24 men and 16 women. Fifty-six distinct fracture occurrences were responsible for a total of 59 lower limb fractures. We compared the number of overall complications between surgical and non-surgical management of fractures. RESULTS: Non-surgical management was realized for 19 fractures and surgery for 40. Characteristics of operated and non-operated patients at the time of each fracture occurrence did not differ concerning age (P = 0.430), sex (P = 0.890), lesion levels (P = 0.410) and AIS classification (P = 0.790). Data analysis highlighted 20 complications directly due to the fracture site for 16 distinct fractures. Seven medical complications were found in 5 distinct fracture events. Only 10 (25.0%) of 40 surgical managements had at least one medical or post-surgical complication, whereas 12 (63.2%) of 19 non-operative managements had at least one complication. Therefore, the overall rate of complications was significantly higher after non-surgical treatment (P = 0.044). CONCLUSION: Lower extremity fractures due to osteoporosis in patients with SCI are responsible for local and general complications. When possible, surgery may be the best management to propose because of fewer overall complications.

Ten years of myocutaneous flaps for pressure ulcers in patients with spinal lesions: Analysis of complications in the framework of a specialised medical-surgical pathway.

INTRODUCTION: The objective of the study is to analyse complications associated with surgery for pelvic pressure ulcers in terms of their frequency, nature and rate of surgical revisions. The secondary aims are to analyse the rate of recurrence, length of stay and time to healing, and to determine factors associated with complications and recurrence. METHODS: It is a single-centre, retrospective cohort study with a 10-year follow-up setting in Nantes University Hospital, France, a specialist centre for spinal cord injury (SCI). All patients who were admitted to the Neurological Physical Medicine and Rehabilitation (PMR) department for surgery (flap coverage) for pelvic pressure ulcers between 1st of January 2004 and 30th September 2014 were included. The main outcome measures were the rate of complications, rate of recurrence, length of stay and time to healing, as well as factors associated with complications and recurrence. RESULTS: One hundred and sixty-six patients underwent 252 flap procedures in 239 operations. The majority of patients had SCI (78.3%). The ulcer sites were mainly ischial (67%), sacral (20%) and trochanteric (12%). Gluteus maximus was used most often (75.3% of flaps) (ischial and sacral ulcers), followed by tensor fascia lata (16.2%) (trochanteric ulcers). The rate of complications that delayed return to wheelchair at 6 weeks was 34.5%. The factors associated with complications were more than one surgical ulcer and drainage time greater than 10 days. The rate of recurrence was 20.04%. The factors related to recurrence were young age, scoliosis and an oblique pelvis. CONCLUSIONS: Management within a specialised medical-surgical pathway limited post-operative complications and recurrences in this sample of subjects who mostly had SCI.

Risk of pressure ulcers in tetraplegic people: a French survey crossing regional experience with a long-term follow-up.

Background: Pressure ulcer risk assessment provides an indicator of quality of care in French health establishments. The reliability and validity of assessment tools have been shown to be lower for people with spinal cord injury (SCI). We hypothesized that skin complications would be less frequent in people with traumatic SCI and tetraplegia (TSCIt), who were initially managed in French regions with a high level of specialized SCI rehabilitation experience. Methods: First, we used the most recent French territorial survey about SCI to determine a 'Level of Regional Experience (LRE) in Specialized Physical Medicine and Rehabilitation'. We then studied the individual variables reported in the Tetrafigap survey (which compiled a cohort of TSCIts people to assess their trajectory and life conditions following their return to community life by questionnaires) using univariate analysis according to these LREs (chi2 test using a significance threshold of P < 0.05). Finally, we performed a series of logistic regressions to determine the link between LREs and pressure ulcers. Results: Management in high-LRE regions was linked with a lower declaration of pressure ulcers during early treatment and in the long term (on average, 8 years post-trauma). Conclusions: Using pressure ulcers as a marker, our study showed the protective element of regional experience in the early management of TSCIts patients. A dilution effect between SCI specialized units and more polyvalent physical medicine and rehabilitation departments should be prevented within each region within the scope of a regional organization that would link referral centres and local health care networks.

Risk Analyses of Pressure Ulcer in Tetraplegic Spinal Cord-Injured Persons: A French Long-Term Survey.

OBJECTIVE: To identify the long-term clinical, individual, and social risk factors for the development of pressure ulcers (PUs) in traumatic spinal cord-injured persons with tetraplegia (TSCIt). DESIGN: Cohort survey with self-applied questionnaires in 1995 and 2006. SETTING: Thirty-five French-speaking European physical medicine and rehabilitation centers participating in the Tetrafigap surveys. PARTICIPANTS: Tetraplegic adults (N=1641) were surveyed after an initial posttraumatic period of at least 2 years. Eleven years later, a follow-up was done for 1327 TSCIt, among whom 221 had died and 547 could be surveyed again. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The proportion of PUs documented at the various defined time points, relative to the medical and social situations of the TSCIt, by using univariate analyses followed by logistic regression. RESULTS: Of the participants, 73.4% presented with a PU during at least 1 period after their injury. Four factors had an effect on the occurrence of PUs in the long-term. Protective features for this population were incomplete motor impairment (odds ratio, 0.5) and the ability to walk (odds ratio, 0.2), whereas a strong predictive factor was the development of a PU during the initial posttrauma phase (odds ratio, 2.7). Finally, a significant situational factor was the lack of a social network (odds ratio, 3.1). CONCLUSIONS: We believe that the highlighting of a motor incomplete feature of SCI (protective against the development of a PU) and of a medical risk factor, an early PU (which served as a definitive marker of the trajectory of TSCIt), together with a social situational factor, indicates the crucial role of initial management and long-term follow-up.

[The catheterized bladder]. / La vessie sondée.

Whatever the cause is, the retention of urine needs a bladder drainage whose mode must not be considered as an evidence. Otherwise, the immediate easiness is likely to be the only criterion of choice. The indwelling catheterization is thus overused, whereas its complications (infectious, cancerous, patient comfort...), which are particularly frequent, should make it be perceived secondarily difficult to manage. Its alternatives, particularly clean intermittent self-catherization and suprapubic catheter, have to be first and systematically discusseed, as well as the relevance of the bladder catherization itself.