Recommendations for long-term follow-up care of secondary health conditions in spinal cord injury/disorder: a systematic review.

Objectives: The purpose of this systematic review is to provide an overview of published follow-up care programs of primary and secondary health conditions (SHCs) in spinal cord injury/disorder (SCI/D) and spina bifida and describe recommendations on content, frequency, setting of follow-up care programs for persons with SCI/D and spina bifida. Methods: According to the sequence of procedures of the AWMF (Association of the Scientific Medical Societies in Germany) a systematic literature search was performed (in PubMed, Cochrane Library and nine additional databases for guidelines) between 5 September 2019 and 22 September 2019. Publications (Jan. 2008-Dec. 2018) and guidelines (up to 2018) published in English or German and describing an evidence-based follow-up care program for persons with SCI/D or spina bifida were included. Results: The systematic literature search found 1973 publications in PubMed and Cochrane Library, resulting in 19 papers for SCI/D and 6 for Spina bifida. Additionally, we included 34 guidelines developed by reputable committees or medical associations. All eligible guidelines, and publications, were rated and classified according to the guidance of AWMF. Of the retrieved publications, and guidelines, level of evidence of follow-up care programs was mostly based on informal procedures and expert opinion or formally consent based expert opinion. None of the guidelines, or publications described an evidence based comprehensive clinical practice guideline (CPG) for follow-up care for people with SCI/D or spina bifida. Conclusion: Based on the comprehensive and extensive literature research conducted, regular (annual) follow-up care appointments at specialized SCI clinics are recommended. There is a notable absence of a comprehensive CPG covering all relevant health conditions for long-term follow-up in SCI/D or spina bifida. In order to provide persons with SCI/D with up-to-date and best possible medical and rehabilitative care, a CPG for follow-up care is urgently needed. In response to this gap, the German-speaking Medical Society of Paraplegia (DMGP) has commissioned its members to establish a guideline for follow-up care for individuals with SCI/D. The current review serves as an evidence-based framework for the development of this guideline.

Health status, functioning and risk profiles for secondary health conditions in adolescents and young adults with spina bifida: a cross-sectional study at time of transition.

INTRODUCTION: The transition from paediatric to adult medical care is a critical period for adolescents with spina bifida, often marked by deteriorating health and functional status. OBJECTIVES: To describe the health status and functioning of individuals with spina bifida at the time of transition from paediatric to adult care and to identify risk profiles for potentially modifiable secondary health conditions (urinary tract infections, pressure injuries, respiratory problems and obesity). METHODS: Descriptive study of data (derived from medical records) from all adolescents and young adults with spina bifida aged 15-25 years who were referred to a single specialised spinal cord injury centre as part of the transition programme during the period from 1 September 2015 to 31 May 2022. Descriptive statistics were used to describe the study population and to analyse the frequency and co-occurrence of congenital and acquired secondary health conditions. The equality of proportions test was used to test the prevalence of secondary health conditions based on important personal and clinical characteristics. RESULTS: We included 43 adolescents with spina bifida with a mean age of 18.4 years (SD 2.5); in 63% of them the neurological level was lumbar, and around 50% of them were wheelchair-dependent. The median Spinal Cord Injury Measure (SCIM) III score was 72 (IQR 61-89). The mean number of secondary health conditions at time of transition was 8.8. The most prevalent secondary health conditions were lower urinary tract dysfunction, bowel dysfunction, sexual dysfunction and contractures. Respiratory problems were more prevalent in females and in individuals with lower SCIM III scores, whereas no differences were observed in the prevalence of other modifiable secondary health conditions. Clustering of secondary health conditions was mainly seen for urinary tract infection + pressure injury and for urinary tract infection + pressure injury + obesity. CONCLUSION: The prevalence of secondary health conditions among individuals with spina bifida at time of transition is alarmingly high and functional profiles underscore the need for supporting adolescents and young adults with daily medical issues. The study highlights the critical role of transition programmes and interdisciplinary follow-up care in preventing health problems and improving functioning and independence in everyday life.

Evidence based clinical practice guideline for follow-up care in persons with spinal cord injury.

Introduction: While it is well-established that follow-up care programs play a crucial role in preventing and early detecting secondary health conditions (SHCs) in persons with spinal cord injury [SCI, including spina bifida (SB)], the availability of evidence-based follow-up care programs remains limited. Under the leadership of the German-speaking Medical Society for Paraplegiology (DMGP), we have developed an evidence based clinical practice guideline for follow-up care of SHCs in persons with SCI and identify research gaps. Methods: This guideline was developed in accordance with the regulations of the Association of the Scientific Medical Societies in Germany (AWMF e.V.). To ensure an evidence-based guidance, we utilized the International Classification of Functioning, Disability and Health (ICF) generic core set and ICF Core Set for individuals with SCI in long-term context as our foundational framework. We conducted a comprehensive literature review to identify existing recommendations for follow-up care and graded the level of evidence according to relevant instruments. Subsequently, we formulated recommendations and achieved consensus through a structured nominal group process involving defined steps and neutral moderation, while adhering to the criteria outlined in the German guideline development instrument (DELBI). Results: Although there is a fair number of literatures describing prevalence and severity of SHCs after SCI, the amount of literature including recommendations was low (19 for SCI and 6 for SB). Based on the current evidence on prevalence and severity of SHCs and available recommendations, a clinical practice guideline on follow-up care of most relevant SHCs was defined. The recommendations for follow-up care are described in the following chapters: (1) Nervous system; (2) (Neuropathic) pain; (3) Cardiovascular diseases; (4) Respiratory System; (5) Immunological system, vaccination and allergies; (6) Gastrointestinal tract and function; (7) Endocrinological system and nutrition; (8) Urogenital system; (9) Contraception, pregnancy, birth and postpartum care; (10) Musculoskeletal system; (11) Pressure injuries; (12) Psychological health; (13) Medication and polypharmacy. Conclusion: We could successfully establish an evidence based clinical practice guideline for follow-up care of SHCs in individuals with SCI. There is however a notable lack of high-quality recommendations for SCI follow-up care.

Prevalence, causes, and risk profile of rehospitalizations in persons with spinal cord injury within the first 10 years after primary rehabilitation.

STUDY DESIGN: Retrospective cohort study. OBJECTIVES: This study aims to identify the prevalence, causes, time pattern and risk profile of rehospitalizations in persons with spinal cord injury (SCI) within a 10-year period following primary rehabilitation and identify most common secondary health conditions (SHCs) and risk profile leading to rehospitalizations. SETTING: Specialized hospital and rehabilitation center for SCI in Switzerland. METHODS: A retrospective analysis was conducted on clinical data from persons with SCI, discharged from initial rehabilitation between January 1, 2010, and December 31, 2012, and followed up over a period of ten years post-discharge. Descriptive statistical methods were utilized to compute the rehospitalization prevalence and to identify the primary reasons. RESULTS: 225 participants were included, 70% were male (n = 179), and the mean age was 50 years (SD 19, Range 17-88). 54% were classified as having paraplegia (n = 122), and 77% incomplete injuries (n = 180). Over the 10-year observation period post-discharge, 120 were readmitted at least once, (prevalence 53%). In total, 66 persons (29%) were rehospitalized once or twice, while 54 persons (24%) were rehospitalized three or more times, with a maximum of 14 times. In the 10-year period, the most common SHCs leading to rehospitalization were infections (19%), pressure injuries (18%), and gastrointestinal problems (16%). During the study period, 57 persons (25%) passed away. CONCLUSIONS: Rehospitalization after primary rehabilitation is frequent and in the majority of the cases due to SHCs. The study findings are valuable for resource planning in healthcare and can guide the implementation of preventive measures to avoid SHCs.

Non-adherence to follow-up care in persons with spinal cord injury within 10 years after initial rehabilitation.

OBJECTIVE: This study aimed to describe the temporal dynamics of and risk factors for non-adherence to outpatient follow-up care in the first 10 years after spinal cord injury. DESIGN: Retrospective single-centre cohort study using data from medical records and municipal resident registers. SUBJECTS/PATIENTS: Patients admitted to a specialized spinal cord injury centre in Switzerland discharged between 1 January 2010 and 31 December 2012 (n = 225). Time-to-event analysis was used to investigate the timing of the first non-adherence event, its association with spinal cord injury, and sociodemographic characteristics. RESULTS: 36% of patients were adherent to annual follow-up appointments; 2% formally transferred to another SCI centre; 44% were non-adherent for general reasons (patient's will to discontinue care [12%] or unknown reasons [32%]); and 18% were non-adherent due to death. Risk factors for non-adherence included older age, lack of long-term partner, and more than 2 h of travel time to the clinic. In the youngest age group (18-30 years), 55% were non-adherent after 10 years. CONCLUSION: A relevant proportion of individuals with spinal cord injury were lost to annual follow-up care. A holistic approach to patient engagement integrating solutions such as telemedicine and involvement of support networks could reduce the risk of non-adherence.

COVID-19 and spinal cord injury: clinical presentation, clinical course, and clinical outcomes of people hospitalised.

STUDY DESIGN: Retrospective study OBJECTIVES: To describe the presenting symptoms/signs, clinical course and outcomes in hospitalised people with spinal cord injury (SCI) and symptomatic COVID-19 infections. SETTING: One university hospital and two SCI centres in Switzerland. METHODS: Descriptive analysis of symptoms/signs, clinical course and outcomes of people with SCI with symptomatic COVID-19 infections and need for hospitalisation. RESULTS: Twenty-two people with SCI were included, 15 (68%) were male, median age 64.5 years (interquartile range, IQR, 52-73 years). Nine (41%) had tetraplegia, and eight (36%) were classified with motor-complete lesions. Frequent clinical symptoms were fever (59%), coughing (54%), fatigue (50%), and dyspnoea (27%). Most frequent complications were bacterial pulmonary superinfection (18%), and acute respiratory distress syndrome (18%). Fifteen persons (68%) needed oxygen therapy during the course of hospitalisation, and 7 (32%) people were ventilated. Median length of stay (LOS) was 23 days (IQR 15-35), varying by age for people under 60 years with a median LOS of 9 days (IQR 8-27), and for those older than 60 years with a median of 34 days (IQR 17-39), respectively. In total, 3 persons (14%) died during hospitalisation, all older with paraplegia. CONCLUSIONS: Typical symptoms like fever and coughing were not present in all people. People with tetraplegia did not demonstrate worse outcomes, on the contrary, they had shorter LOS, no difference in ventilation needs, and no higher mortality compared to people with paraplegia. Older people showed longer LOS. This study recommends close supervision of the SCI population to detect early signs and symptoms of COVID-19 infection.

Unplanned hospital admissions due to secondary health conditions after spinal cord injury: a population-based description of determinants of length of stay.

STUDY DESIGN: Population-based prospective study. OBJECTIVES: To provide a population-based description of length of stay (LOS) and person-related risk factors following unplanned hospital admission due to a secondary health condition (SHC) in persons with spinal cord injury (SCI). SETTING: Specialized SCI hospital and rehabilitation center in Switzerland. METHODS: Descriptive analysis of LOS using routine clinical data of persons with SCI, who were acutely hospitalized between 01.01.2017-30.06.2018. Multivariable regression analysis was used to derive marginal predictions of LOS by acute SHCs and person characteristics. RESULTS: The study included 183 persons, 83% were male, and the median age was 57 years (interquartile range, IQR, 49-67 years). SCI cause was traumatic in 160 (88.4%) cases, 92 (50.3%) were persons with tetraplegia, 147 (80.3%) were classified as motor complete lesions (American Spinal Injury Association Impairment Scale (AIS) A or B) and median time since injury (TSI) was 24 (IQR 13-34) years. Median LOS was 19 (IQR 9-39) days, varying from 74 (IQR 39-92) days for pressure ulcers, 13 (IQR 8-24) days for urinary tract infections (UTI), to 27 (IQR 18-47) days for fractures. LOS was prolonged in persons with multiple co-morbidities or those developing complications during hospitalization. Sex, SCI etiology and lesion level were not associated with LOS. CONCLUSIONS: This population-based description identified substantial variation in LOS between acute SHCs and clinical complications as the main, potentially modifiable, person-related risk factors for extended hospital stay.