Environmental barriers perceived by the Finnish population with spinal cord injury: a cross-sectional survey.

STUDY DESIGN: Cross-sectional survey of the Finnish population with spinal cord injury (SCI). OBJECTIVES: To explore the frequencies of perceived environmental barriers (EB) that made participation harder for the Finnish population with SCI and to compare the occurrence of perceived EBs by gender, age, time since injury, and injury severity. SETTING: Participants were recruited from the registers of the three SCI outpatient clinics responsible for the lifelong care of people with SCI in Finland. METHODS: The self-administered Nottwil Environmental Factors Inventory Short Form (NEFI-SF) collected in the Finnish Spinal Cord Injury Study (FinSCI) (n = 1772) was used. Nonparametric tests and multinomial logistic regression models were utilized. RESULTS: 880 individuals responded to the NEFI-SF items (response rate 50%). Climate was perceived as a barrier by 72% and a serious one by 44% of the respondents. The rates regarding public access were 59% and 24%, private home access 46% and 18%, and long-distance transport 45% and 20%. Four out of ten respondents reported that finances, lack of assistive devices for short-distance transport, and political decisions restricted their participation. The NEFI-SF total scores were higher (meaning more perceived restrictions by EBs) for those more severely injured. CONCLUSIONS: Climate, access to public and private places, challenges with transport, finances, and political decisions were the EBs most frequently perceived to restrict participation by the Finnish population with SCI. Most EBs that were prominent causes of restrictions are modifiable. Greater accessibility to the built environment, equal services to all, and positive special treatment could reduce their effects.

ICF-linking and psychometric properties of upper extremity mobility outcome measures in spinal cord injury - a scoping review.

OBJECTIVE: The purpose of this study was to explore the outcome measures used in upper extremity rehabilitation and research in spinal cord injury and to investigate their psychometry. DESIGN: Scoping review. DATA SOURCES: PubMed, the Cochrane library, PEDro, Medline (Ovid). ELIGIBILITY CRITERIA FOR SELECTING STUDIES: The search process and study selection was carried out as follows: Firstly, a systematic search was carried out for articles on upper extremity rehabilitation after SCI. Performance or observational outcome measures which were designed for a clinical setting were collected from selected studies. Secondly, eligible outcome measures were linked to the ICF. The ICF-linked outcome measures were further screened for inclusion according to how comprehensively they covered ICF categories. Finally, a search of the selected outcome measures was performed to investigate their psychometry. RESULTS: A total of four outcome measures and nine psychometric studies were selected for the scoping review; six studies addressed GRASSP, one addressed AuSpinal, one addressed SHFT and one addressed TRI-HFT. Of the 13 COSMIN measurement properties, studies of GRASSP covered seven, AuSpinal covered five and both SHFT and TRI-HFT covered three properties. CONCLUSIONS: The psychometric properties of GRASSP were most extensively studied showing eligible reliability and validity. Although there are still some measurement properties to be explored, GRASSP can be recommended for use in the evaluation of upper extremity mobility in the SCI rehabilitation and research. More research is needed on the psychometrics of other outcome measures in people with spinal cord injuries before the outcome measures can be unconditionally recommended.

Self-reported functioning among patients with ultra-rare nemaline myopathy or a related disorder in Finland: a pilot study.

BACKGROUND: Nemaline myopathy (NM) and related disorders (NMr) form a heterogenous group of ultra-rare (1:50,000 live births or less) congenital muscle disorders. To elucidate the self-reported physical, psychological, and social functioning in the daily lives of adult persons with congenital muscle disorders, we designed a survey using items primarily from the Patient Reported Outcomes Measurement Information System, PROMIS®, and conducted a pilot study in patients with NM and NMr in Finland. The items were linked to International Classification of Functioning, Disability and Health (ICF) categories. RESULTS: In total, 20 (62.5%) out of 32 invited persons resident in Finland participated in the study; 12 had NM and 8 NMr, 15 were women and 5 men aged 19-75 years. Sixteen (80%) were ambulatory and 4 (20%) NM patients used wheelchairs. The results from the PROMIS measuring system and ICF categories both indicated that non-ambulatory patients of this study faced more challenges in all areas of functioning than ambulatory ones, but the differences were smaller in the domains measuring psychological and social functioning than in physical functioning. In addition, the COVID-19 pandemic adversely affected the functioning of non-ambulatory patients more than that of ambulatory patients. The interindividual differences were, however, noticeable. CONCLUSIONS: To our knowledge, this pilot study is the first comprehensive survey-based study of the physical, psychological, and social functioning of adult persons with nemaline myopathy or related disorders. The results indicate vulnerability of non-ambulatory patients being at higher risk to a decrease in general functioning during global or national exceptional periods. The responses also gave directions for modifying and improving the survey for future studies.

Telerehabilitation in the Finnish Outpatient Rehabilitation Setting from the Perspective of the Socio-Technical Systems Theory.

BACKGROUND: In the development of effective telerehabilitation (TR) interventions, understanding the various characteristics affecting its practice is essential. Remote connection creates a new technically shaped environment for therapy and, therefore, previous therapy methods do not work the same way as before. OBJECTIVE: The objective of this survey was to describe the practice of TR through the socio-technical theory approach. METHODS: The 629 respondents to the online questionnaire included music therapists, occupational therapists, speech and language therapists, physiotherapists, and neuropsychologists. The materials consisted of five open-ended questions. The analysis combined data-based and theory-based analysis. RESULTS: In the data-based content analysis, we identified three main categories and eight generic categories, whereas in the theory-based, we categorised the main results according to the Fit Between Individuals, Tasks, Technology, and Environment (FITTE) framework dimensions. TR is everyday-life based, it requires shared participation, and the approach has to include coaching and collaboration with the client and their close associates. The everyday-life environment is one of the main dimensions that affect all the other dimensions. CONCLUSIONS: TR can be seen as technology-mediated home-based rehabilitation, as it can integrate rehabilitation into the client's everyday life. In TR, therapy becomes multilateral and it creates a new kind of shared partnership into outpatient therapy.

Facilitators and barriers in the rehabilitation process described by persons with spinal cord injury: a deductive-inductive analysis from the Finnish spinal cord injury study.

BACKGROUND: This study aimed to determine the factors that promote and facilitate rehabilitation as well as challenges and possible barriers perceived by people with spinal cord injury (SCI). MATERIALS AND METHODS: This study was part of a larger, mixed-method Finnish Spinal Cord Injury (FinSCI) study. We interviewed 45 persons with SCI representing participants from the FinSCI study and used a qualitative approach and a deductive-inductive content analysis to analyse the data. RESULTS: We identified 28 facilitators and 19 barriers in the rehabilitation process. The majority of the facilitators and barriers were related to the rehabilitation planning phase. There were more barriers than facilitators in applying for and accessing treatment or rehabilitation and during the implementation of rehabilitation. Facilitators consisted of successful, realized, or planned treatments or rehabilitation events; clear goals; multidisciplinary teamwork; support and monitoring in various changing situations; and the rehabilitees' own capabilities and activities, among other things. The barriers included delays, challenges and deficiencies in the planning and implementation of treatment or rehabilitation; the lack of different skills; and resources of rehabilitation professionals; and different personal factors, which made the rehabilitation process cumbersome. CONCLUSIONS: Good communication and interaction between stakeholders are crucial for the progress of rehabilitation.

Functional independence in the Finnish spinal cord injury population.

STUDY DESIGN: A cross-sectional survey of the Finnish population with spinal cord injury (FinSCI database). OBJECTIVES: To describe the functional independence of the population with spinal cord injury (SCI) in Finland and to identify how generic and lesion characteristics affect their functional independence. SETTING: The participants were recruited from the registers of three SCI outpatient clinics responsible for lifelong follow-up and care for people with SCI in Finland. METHODS: The data were retrieved from FinSCI (n = 1772). The response rate was 50% (n = 884). The Spinal Cord Independence Measure-Self Report (SCIM-SR) was used. The data were analyzed with univariate testing, factor analyses, and multiple linear regression models. RESULTS: The median (percentiles 25; 75) SCIM-SR total score was 76.0 (58.8; 89.0), and the score was 18.0 (13.0; 20:0) for the self-care sub-scale, 33.0 (25.0; 39.0) for the respiration and sphincter management sub-scale and 29.0 (16.0; 36.8) for the mobility sub-scale. The higher the neurological level in groups AIS A, B, and C, the lower the functional ability. Group AIS D at any injury level had the highest level of functional ability. Age and the number of years since injury negatively influenced the SCIM-SR scores for every sub-scale. CONCLUSION: Based on the International Spinal Cord Injury Core Data Set, the severity of SCI can differentiate persons with SCI according to their functional ability. The results suggest that SCI affects individuals' health more than ageing alone does, thereby reducing the functional ability and independence of persons with SCI over time.

Prevalence of comorbidities and secondary health conditions among the Finnish population with spinal cord injury.

STUDY DESIGN: A cross-sectional study. OBJECTIVES: To explore the prevalence of comorbidities, secondary health conditions (SHCs), and multimorbidity in the Finnish population with spinal cord injury (SCI). SETTING: The data were collected from the Finnish Spinal Cord Injury Study (FinSCI). Participants were identified from three SCI outpatient clinics responsible for the lifelong follow-up of persons with SCI in Finland, (n = 884 participants, response rate; 50%). METHODS: The FinSCI-questionnaire included a question from the National Study of Health, Well-being, and Service (FinSote) for screening 12 comorbidities. The reference data of the general population for that question were received from the Finnish Institute for Health and Welfare. The Spinal Cord Injury Secondary Condition Scale (SCI-SCS) was used to screen 16 SHCs. The data were analysed with univariate testing and multivariable negative binomial regression modelling. RESULTS: The most common comorbidities were high blood pressure/hypertension (38%), back problems (28%), and high cholesterol (22%). The most common SHCs were joint and muscle pain (81%), muscle spasms (74%), chronic pain (71%), and bowel problems (71%). The prevalence of comorbidities was highest among persons aged ≥76 years (mean; 2.0; scale range; 0-12). The prevalence of SHCs was highest in the severity of SCI group C1-4 AIS A, B, and C (mean; 8.9; scale range; 0-16). CONCLUSIONS: Further research on geriatrics in SCI, non-traumatic SCI, and knowledge of the needs of persons with cervical lesion AIS A, B, or C is required, due to the fact that the prevalence of multimorbidity is high in these groups.

Physical health among the Finnish spinal cord injury population according to the Patient Reported Outcome Measurement Information System (PROMIS®).

OBJECTIVE: The aim of this study is to assess the physical health in the Finnish Spinal cord injury (SCI) population using the Patient Reported Outcome Measurement Information System (PROMIS®) and make a comparison to the general United States (US) population. Furthermore, the aim is to explore the associations between pain interference, pain intensity, sleep disturbance, and fatigue and physical function. DESIGN: Cross-sectional study. This study is part of the Finnish Spinal Cord Injury (FinSCI) community survey study. SETTING: Community, Finland. PARTICIPANTS: 884 persons with SCI. INTERVENTIONS: Not applicable. OUTCOME MEASURES: Physical health was measured with custom Patient Reported Outcome Measure System (PROMIS®) short forms. RESULTS: Higher age and lesion level indicated more severe physical function impairments. Persons ≥46 years exhibited more pain interference symptoms compared to younger participants. On average, the Finnish SCI population had 1.3 SD lower physical function and 0.9 SD higher pain interference T-scores compared to the US general population (P < 0.001). The most significant association was observed between pain interference and physical function (r = -0.364, P < 0.001). CONCLUSIONS: The present study provides a description of the state of physical health in the Finnish spinal cord injury population, as well as the associations between the physical health areas. The results highlight the substantiality of pain management in terms of improving physical function. TRIAL REGISTRATION NUMBER: NCT04649814.

Health-related factors for work participation in persons with spinal cord injury in Finland.

OBJECTIVE: To explore work participation and the health-related factors affecting work participation among the Finnish Spinal Cord injury (FinSCI) study population (n = 884). METHODS: A cross-sectional explorative observational study in the FinSCI community survey applying Patient-Reported Outcomes Measurement Information System (PROMIS®) forms on Social Health and Global Health. Analyses of socio-demographic and injury-related data were performed. RESULTS: Employment among the study population (n = 452) was 26.5%. Physical, Mental, Social and General Health were better in the employed group compared with work-age persons not working. Logistic regression showed that work participation was related to all health domains, but Physical Health and Ability to Participate in Social Roles and Activities in Social Health were the strongest indicators of likelihood of being at work. Paraplegia and young age were associated with increased likelihood of work participation. CONCLUSION: The first national survey among people with spinal cord injury in Finland shows low level of employment. The results suggest that pain, physical function, and ability to participate in social roles should be monitored by health and vocational professionals when assessing a person's likelihood of being in work.

Towards an ICF-based self-report questionnaire for people with skeletal dysplasia to study health, functioning, disability and accessibility.

BACKGROUND: Little is known about the spectrum of everyday challenges that people with skeletal dysplasia face because of their health and functioning. We aimed to identify factors related to health, functioning and disability in people with skeletal dysplasia, and their challenges with accessibility in order to form a self-reported questionnaire for national data collection. The comprehensive musculoskeletal post-acute core set of the International Classification of Functioning, Disability and Health (ICF) was used as a framework. METHODS: An iterative, participatory and qualitative process was used to formulate a questionnaire. Items were searched from Patient-Reported Outcomes Measurement Information System and from other self-report instruments, additional items were formulated using ICF linking rules. Expert panels from the target population assessed the face and content validity in thematic interviews. RESULTS: The questionnaire demonstrated its relevance, comprehensiveness and feasibility for people with skeletal dysplasia. The ICF linkages showed the contents' correspondence to the construct. Expert panels added 15 categories and one on chapter level to the core set and confirmed content validity. The final survey covers 86 ICF categories and 173 ICF-linked items that were grouped to 33 questions. CONCLUSIONS: The content of the questionnaire proved to be sufficiently valid for people with skeletal dysplasia. It can be used to explore their health, functioning, disability and accessibility to develop care and rehabilitation policies, to plan services and to provide information to various parties involved.

Functioning and equality according to International Classification of Functioning, Disability and Health (ICF) in people with skeletal dysplasia compared to matched control subjects - a cross-sectional survey study.

BACKGROUND: Skeletal dysplasias are rare disorders often leading to severe short stature. This study aimed to gain new comprehensive information about functioning and equality in people affected by skeletal dysplasia compared to matched controls without skeletal dysplasia. METHODS: Functioning was assessed by questionnaire, which was formed by operationalizing International Classification of Functioning, Disability and Health (ICF) core set's categories into the items according to the ICF linking rules, using primarily Patient Reported Outcomes Measurement Information System PROMIS® - items. RESULTS: Altogether 80 subjects with skeletal dysplasia and 55 age-, gender- and place of residence -matched controls participated. People with skeletal dysplasia experienced more pain (p < 0.001) and the pain interfered more their daily lives (p = 0.037) compared to the controls. They had more problems related to musculoskeletal functions and exercise tolerance, difficulties in mobility, used more assistive products and technology and were more affected by climate and seasonal changes (p < 0.001). They met challenges in self-care, acquisition of goods and services and household tasks (p < 0.001) and in participating in close social relationships, leisure time activities (p < 0.001) and associations and organizational services (p = 0.007). They felt less satisfied with remunerative work (p = 0.003), felt more inequality (p = 0.008), met more negative attitudes of others (p < 0.001) and felt having less support given by family and friends (p = 0.022). They used more social and health services and experienced more dissatisfaction with those. CONCLUSIONS: Our study indicates that skeletal dysplasias restrict functioning extensively and significantly affect daily living. By building accessible environment and improving equal services, functioning could be improved.

Health, functioning and accessibility among spinal cord injury population in Finland: Protocol for the FinSCI study.

BACKGROUND AND PURPOSE: The purpose of the Finnish Spinal Cord Injury Study (FinSCI) is to identify factors related to the health and functioning of people with spinal cord injury, their challenges with accessibility, and how such factors are interconnected. The International Classification of Functioning, Disability and Health (ICF) is used as a structured framework in the study. DESIGN: Protocol of mixed methods study. RESULTS: Study participants were recruited from all 3 SCI outpatient clinics in Finland. The final target group consists of 1,789 subjects with spinal cord injury. The final questionnaire was formed from 5 different patient-reported instruments. The spinal cord injury-specified instruments are the Spinal Cord Injury Secondary Condition Scale, the Spinal Cord Independence Measure, and the Nottwil Environmental Factors Inventory Short Form. In addition, questions from the following generic instruments were chosen after a selection process: the Patient-Reported Outcomes Measurement Information System, PROMIS®, and the National Study of Health, Well-being and Service, FinSote. Altogether, the final questionnaire covers 64 ICF categories and consists of 151 ICF-linked questions. CONCLUSION: The formulated questionnaire covers widely different aspects of health, functioning and accessibility. The questionnaire results and subsequent interviews will help in developing care and rehabilitation policies and services for people with spinal cord injury.

Translating experimental evidence to finding novel ways to promote motor recovery in stroke patients - a review.

Recent advances in basic research have revealed the complex structural plasticity associated with the spontaneous motor recovery after stroke. Various rehabilitative interventions seem to act through the same repair mechanisms to further enhance recovery processes. In this review, we first summarize the current understanding on brain plasticity and repair after stroke. We then outline experimental approaches for studying stroke rehabilitation in rodents and review current rehabilitative practices in stroke patients. Although experimental approaches are valuable in providing details regarding mechanisms and proof-of-concept data, relatively modest treatment effects in stroke patients highlight the translational gap. Further studies will be needed to find optimal treatment paradigms through emerging knowledge of brain repair, whilst appreciating the important differences between rodent and patient studies that complicate the translation of experimental data.

Functioning and Challenges in Equality and Accessibility Among People with Short Stature.

Accessibility is not the same for all of us. This study concerns people with short stature, their functioning and challenges in equality and accessibility in our environment based on average measures.

Longitudinal study on modulated corticospinal excitability throughout recovery in supratentorial stroke.

Corticospinal excitability (CSE) is modulated by stroke-induced lesions affecting the brain. This modulation is known to be dependent on the timing of the evaluation, and strongest abnormalities are often found in the acute stage. Our study aimed to characterize changes in CSE asymmetry between the affected and the unaffected hemisphere (AH and UH) during the first month after stroke onset and at 6 month follow-up. Neuronavigated transcranial magnetic stimulation (nTMS) was used to assess the CSE of the abductor pollicis brevis (APB) muscle of the hand and tibialis anterior (TA) muscle of the leg in 16 patients over 5 time-points. AH excitability recovered significantly during 6 months, whereas interhemispheric asymmetry remained significant up to 1 month post-stroke in the APB muscle. Greater initial CSE was associated with good motor function at 6 months. The motor cortical excitatory recovery initiated within week of the stroke and was most prominent within 1 month after stroke onset. Lesion size correlated with CSE of the UH at 10 days, while overall severity of the symptoms correlated inversely with CSE of the AH. This study demonstrates the quick improvement in the CSE via estimation of interhemispheric asymmetry; however, the recovery in the asymmetry continues to normalize even after reaching the threshold for normal values in CSE.