Icelandic stroke survivors: Functioning and contextual factors and ActivABLES for home-based exercise and physical activity

Aims: The aims of this thesis were: (1) to describe functioning and contextual factors of community-dwelling stroke survivors 1-2 years after their first stroke, based on the International Classification of Functioning, Disability and Health (ICF) with focus on potential differences between age-groups, (2) to describe the process of developing ActivABLES, which aims to increase home-based therapeutic exercise and daily physical activity among stroke survivors, and (3) to investigate the feasibility of ActivABLES in terms of acceptability, demand, implementation and practicality. Methods: A cross-sectional national survey was used to collect data. Potential participants were identified through registries from the two main hospitals in Iceland and included community-dwelling stroke survivors who had been admitted with their first stroke 1-2 years earlier. Exclusion criteria included living in nursing homes, diagnosis of dementia, not having an Icelandic national insurance number and living abroad. Participants were 114 (56.2% response rate), 50% men, 27 to 94 years old (71.6±12.9 years), and categorized into the age-groups: ≥75 years(n=51), 65-74 years (n=34) and <65 years (n=29). They answered questions on health, functioning (body function, activities, participation) and contextual factors (environmental, personal) along with two standardized questionnaires, the Stroke Impact Scale (SIS) and the Behavioural Regulation Exercise Questionnaire-2 (BREQ-2). The process of developing ActivABLES was guided by principles of human-centred design and the Medical Research Council framework for development and evaluation of complex interventions. A mixed methods design was utilized to test the feasibility of ActivABLES among ten stroke survivors (55–79 years) who used six prototypes for four weeks with support from their informal caregivers. Data collection included measures on balance, mobility and hand function before and after the four-week period, along with adherence diaries and motion detectors. Semi-structured interviews were conducted with the stroke survivors and their caregivers after the four-week period. Themes were identified related to four domains of feasibility: acceptability, demand, implementation and practicality. Data was integrated by examining any (dis)congruence in the quantitative and qualitative findings. Results: The results from the cross-sectional survey revealed a complex and informative pattern of functioning and contextual factors in the lives of community-dwelling stroke survivors, where the most common symptom immediately after the stroke was balance impairments. Some differences and similarities in functioning and contextual factors were found between the age- groups. The oldest participants reported more comorbidities, used more walking devices and fewer smart devices than both younger groups. In the SIS, the oldest participants had lower scores than both younger groups in the domains of activities of daily living and mobility. The development of ActivABLES resulted in six prototypes which were tested in the feasibility study: (1) ActivFOAM for balance exercises, (2) WalkingSTARR to facilitate walking, (3) ActivBALL for hand exercises, (4) ActivSTICKS for upper arm exercises, and (5) ActivLAMP and (6) ActivTREE which both give visual feedback on progress of exercise and physical activity. ActivFOAM, ActivBALL and ActivSTICKS were all connected to a tablet which gave exercise instructions. All the exercise prototypes could be connected to ActivLAMP and ActivTREE to give feedback on the magnitude of exercise. Settings could be individualised and recommended in daily time and/or repetition could easily be progressed to match higher activity levels. In the feasibility study, improvements in functional measures were shown after the four-week use and more physical activity was detected with motion detectors. The themes identified from the interviews for each feasibility domain were: (1) acceptability: appreciation, functional improvements, self-initiated activities and expressed potential use for future stroke survivors; (2) demand: reported use, interest in further use and need for follow-up; (3) implementation: importance of feedback, variety of exercises and progression of exercises; and (4) practicality: need for support and technical problems. The quantitative and qualitative findings converged well with each other and supported the feasibility of ActivABLES. Conclusion: This thesis is a good example of how the international language of ICF can be used to holistically describe functioning and contextual factors of a population and how a technical application can be developed and used by stroke survivors to increase exercise and physical activity. Our results show that stroke survivors are highly capable of using ActivABLES in community rehabilitation. Future research should focus on further studies in larger samples to prepare full development and marketing of ActivABLES. Thereby, it is important to focus on heterogeneity among older stroke survivors and the fact that they need person-centred rehabilitation but not “one fit for all”.Markmið: Markmið doktorsverkefnisins voru að: (1) lýsa færni og aðstæðum einstaklinga sem búa í heimahúsum 1-2 árum eftir að hafa fengið fyrsta heilaslag, á grundvelli alþjóða flokkunarkerfisins ICF um færni, fötlun og heilsu og með áherslu á mögulegan mun á milli einstaklinga í þremur aldurshópum, (2) lýsa þróun á tæknibúnaðinum ActivABLES sem miðar að því að auka þátttöku einstaklinga sem hafa fengið heilaslag í markvissum heimaæfingum og daglegri hreyfingu og (3) meta fýsileika ActivABLES með því að rýna í ásættanleika, eftirspurn, útbúnað og hentugleika tæknibúnaðarins. Aðferðir: Þversniðskönnun á landsvísu þar sem upplýsingar um mögulega þátttakendur komu úr sjúkraskrám um þá sem höfðu verið lagðir inn með sjúkdómsgreininguna heilaslag í fyrsta sinn á tímabilinu 1.apríl 2016 – 31.mars 2017. Útilokunarskilyrði voru búseta á hjúkrunarheimili, vitræn skerðing samkvæmt sjúkdómsgreiningu, íslenska kennitölu vantar og búseta erlendis. Þátttakendur voru 114 (56,2% þátttökuhlutfall), 50% karlar, á aldrinum 27-94 ára (71,6±12,9 ára) og úr þremur aldurshópum: 75 ára og eldri (n=51), 65-74 ára (n=34) og yngri en 65 ára (n=29). Könnunin samanstóð af spurningum um heilsufar, færni (líkamsstarfsemi, athafnir og þátttöku) og aðstæður (persónubundnar og umhverfistengdar) ásamt tveimur stöðluðum spurningalistum; Mælistiku um áhrif heilaslags (SIS) og Spurningalista um viðhorf til æfinga (BREQ-2). Þróun ActivABLES var byggð á persónumiðaðri nálgun og líkani um þróun og mat á margþátta íhlutunum frá Medical Research Council í Bretlandi. Blandað snið var notað til að rannsaka fýsileika ActivABLES með tíu einstaklingum (55-79 ára) sem höfðu fengið heilaslag og notuðu sex frumgerðir af tæknibúnaðinum til æfinga og hreyfingar yfir fjögurra vikna tímabil með aðstoð aðstandenda. Jafnvægi, hreyfifærni og færni handa var metin með stöðluðum mælitækjum fyrir og eftir tímabilið, dagleg hreyfing var metin með hreyfimælum og þátttakendur skráðu notkun og athugasemdir í dagbók. Í lokin voru tekin hálf-stöðluð viðtöl við þátttakendur og aðstandendur. Við þemagreiningu viðtalsgagna var tekið tillit til fjögurra þátta fýsileika; ásættanleika, krafna, útbúnaðar og hentugleika. Megindleg og eigindleg gögn voru síðan sameinuð og greint hvort niðurstöður voru samhljóma. Niðurstöður: Niðurstöður könnunarinnar sýndu margbreytilegt og flókið samspil færni og aðstæðna hjá þátttakendum. Algengasta einkennið strax í kjölfar heilaslags var skerðing á jafnvægi. Við samanburð á færni og aðstæðum milli aldurshópa kom fram munur en einnig líkindi á milli hópa. Elsti hópurinn hafði meiri fjölkvilla, notaði frekar gönguhjálpartæki og síður snjalltæki en yngri hóparnir. Jafnframt fékk elsti hópurinn færri stig en yngri hóparnir í þáttum í SIS-spurningalistanum sem lúta að athöfnum dagslegs lífs og hreyfanleika. Þróunarferli ActivABLES skilaði sex frumgerðum sem voru prófaðar í fýsileikarannsókninni: (1) ActivFOAM fyrir jafnvægisæfingar, (2) WalkingSTARR til að ýta undir göngu, (3) ActivBALL til að æfa færni handa og efri útlima, (4) ActivSTICKS til að æfa færni efri útlima, og (5) ActivLAMP og (6) ActivTREE sem veittu endurgjöf í formi ljóss eftir því sem þátttakandanum miðaði áfram í heimaæfingum og hreyfingu. ActivFOAM, ActivBALL og ActivSTICKS voru öll tengd við spjaldtölvu sem sýndi æfingarnar. Þær fjórar frumgerðir sem voru til æfinga og þjálfunar voru tengdar við ActivLAMP eða ActivTREE sem veittu sjónræna endurgjöf um magn æfinga og hreyfingar. Stillingar voru einstaklingsmiðaðar og einfalt var að breyta ráðleggingum um tímalengd og/eða fjölda endurtekninga fyrir viðeigandi stignun. Í fýsileikarannsókninni komu fram bætingar í stöðluðum mælingum að lokinni fjögurra vikna notkun og hreyfimælar sýndu meiri líkamlega virkni. Greining á niðurstöðum fyrir hvern þátt fýsileika leiddi í ljós eftirfarandi þemu: (1) ásættanleiki: þakklæti, meiri færni, frumkvæði í virkni og möguleg notkun fyrir einstaklinga sem munu fá heilaslag í framtíðinni; (2) eftirspurn: raunveruleg notkun, áhugi á frekari notkun og þörf fyrir eftirfylgd; (3) útbúnaður: mikilvægi endurgjafar, fjölbreytni í æfingu og framgangur í æfingum; og (4) hentugleiki: þörf á aðstoð og tæknileg vandkvæði. Megindlegar og eigindlegar niðurstöður voru mjög samhljóma og studdu vel við fýsileika ActivABLES. Ályktun: Þetta verkefni er gott dæmi um hvernig nýta má alþjóðlega flokkunarkerfi ICF fyrir heildræna lýsingu á færni og aðstæðum ákveðins hóps af einstaklingum og hvernig þróa má tæknibúnað tengdan snjalltækjum fyrir einstaklinga sem hafa fengið heilaslag fyrir markvissar heimaæfingar og daglegra hreyfingu. Fýsileiki ActivABLES fyrir einstaklinga sem hafa fengið heilaslag rennir stoðum undir mikilvægi tæknibúnaðar í endurhæfingu þessa hóps og kallar á frekari rannsóknir í stærri hópum til að fullvinna tæknibúnaðinn og koma honum á markað. Frekari rannsóknir á færni og aðstæðum eldri einstaklinga eru einnig nauðsynlegar til að sýna fram á þá staðreynd að endurhæfing einstaklinga eftir heilaslag þarf að vera fjölbreytt og einstaklingsmiðuð.NordForsk, Ranní

Feasibility of ActivABLES to promote home-based exercise and physical activity of community-dwelling stroke survivors with support from caregivers : A mixed methods study

BackgroundTechnical applications can promote home-based exercise and physical activity of community-dwelling stroke survivors. Caregivers are often able and willing to assist with home-based exercise and physical activity but lack the knowledge and resources to do so. ActivABLES was established to promote home-based exercise and physical activity among community-dwelling stroke survivors, with support from their caregivers. The aim of our study is to investigate the feasibility of ActivABLES in terms of acceptability, demand, implementation and practicality.MethodsA convergent design of mixed methods research in which quantitative results were combined with personal experiences of a four-week use of ActivABLES by community-dwelling stroke survivors with support from their caregivers. Data collection before, during and after the four-week period included the Berg Balance Scale (BBS), Activities-Specific Balance Confidence Scale (ABC), Timed-Up-and-Go (TUG) and Five Times Sit to Stand Test (5xSST) and data from motion detectors. Semi-structured interviews were conducted with stroke survivors and caregivers after the four-week period. Descriptive statistics were used for quantitative data. Qualitative data was analysed with direct content analysis. Themes were identified related to the domains of feasibility: acceptability, demand, implementation and practicality. Data was integrated by examining any (dis)congruence in the quantitative and qualitative findings.ResultsTen stroke survivors aged 55-79years participated with their informal caregivers. Functional improvements were shown in BBS (+2.5), ABC (+0.9), TUG (-4.2) and 5xSST (-2.7). More physical activity was detected with motion detectors (stand up/sit down +2, number of steps +227, standing +0.3h, hours sitting/lying -0.3h). The qualitative interviews identified themes for each feasibility domain: (i) acceptability: appreciation, functional improvements, self-initiated activities and expressed potential for future stroke survivors; (2) demand: reported use, interest in further use and need for follow-up; (3) implementation: importance of feedback, variety of exercises and progression of exercises and (4) practicality: need for support and technical problems. The quantitative and qualitative findings converged well with each other and supported the feasibility of ActivABLES.ConclusionsActivABLES is feasible and can be a good asset for stroke survivors with slight or moderate disability to use in their homes. Further studies are needed with larger samples.Peer reviewe

Detecting changes in the Arctic Ecosystem – Long-Term Benthos Monitoring network for detecting changes in the Arctic benthic ecosystem (LTM-Benthos) 2017-2020

publishedVersio

Developing ActivABLES for community-dwelling stroke survivors using the Medical Research Council framework for complex interventions.

To access publisher's full text version of this article, please click on the hyperlink in Additional Links field or click on the hyperlink at the top of the page marked DownloadBackground: Novel technical solutions are called for to promote home-based exercise among community-dwelling stroke survivors supported by their caregivers. Lack of resources and knowledge about how to accomplish it, has been demonstrated. The objective of this study is to describe in detail the development of ActivABLES, a technical intervention to promote home-based exercise and physical activity engagement of community-dwelling stroke survivors with support from their caregivers. Methods: The technical development process of ActivABLES was guided by the Medical Research Council (MRC) framework for development and evaluation of complex interventions as well as by principles of human-centred design and co-design. The main steps included: (1) Synthesis of evidence supporting the inclusion of balance exercises, mobility and walking exercises and exercises for the upper arm; (2) Implementation of initial user studies with qualitative data collection from individual interviews with stroke survivors, and focus group interviews with caregivers and health professionals; (3) Preliminary testing of eight prototypes with seven stroke survivors and their caregivers. Results: After the preliminary testing of eight prototypes, four prototypes were not further developed whereas four prototypes were modified further. In addition, two new prototypes were developed, leaving six prototypes for further modification: 1) ActivFOAM for balance exercises, 2) WalkingSTARR to facilitate walking, 3) ActivBALL for hand exercises, 4) ActivSTICKS for upper arm exercises, and 5) ActivLAMP and 6) ActivTREE which both give visual feedback on progress of daily exercise and physical activities. ActivFOAM, ActivBALL and ActivSTICKS are all connected to a tablet where exercise instructions are given. All the exercise prototypes can be connected to ActivLAMP and ActivTREE to give feedback on how much exercise the user has done. Settings can be individualised and recommended daily time and/or repetition can easily be changed as the user progresses to higher activity levels. Conclusions: The development process of ActivABLES was guided by the principles of human-centred design, with iterative testing of future users, and by the MRC framework of complex intervention, with a repeated process of development and testing. This process resulted in six prototypes which are available for feasibility testing among a small group of community-dwelling stroke survivors. Keywords: Home-based exercise; Stroke survivors; Technical intervention.NordForsk ActivABLES project Icelandic Physiotherapy Association Icelandic Ministry of Welfar

Physical and cognitive impact following SARS-CoV-2 infection in a large population-based case-control study

© 2023. The Author(s).BACKGROUND: Persistent symptoms are common after SARS-CoV-2 infection but correlation with objective measures is unclear. METHODS: We invited all 3098 adults who tested SARS-CoV-2 positive in Iceland before October 2020 to the deCODE Health Study. We compared multiple symptoms and physical measures between 1706 Icelanders with confirmed prior infection (cases) who participated, and 619 contemporary and 13,779 historical controls. Cases participated in the study 5-18 months after infection. RESULTS: Here we report that 41 of 88 symptoms are associated with prior infection, most significantly disturbed smell and taste, memory disturbance, and dyspnea. Measured objectively, cases had poorer smell and taste results, less grip strength, and poorer memory recall. Differences in grip strength and memory recall were small. No other objective measure associated with prior infection including heart rate, blood pressure, postural orthostatic tachycardia, oxygen saturation, exercise tolerance, hearing, and traditional inflammatory, cardiac, liver, and kidney blood biomarkers. There was no evidence of more anxiety or depression among cases. We estimate the prevalence of long Covid to be 7% at a median of 8 months after infection. CONCLUSIONS: We confirm that diverse symptoms are common months after SARS-CoV-2 infection but find few differences between cases and controls in objective parameters measured. These discrepancies between symptoms and physical measures suggest a more complicated contribution to symptoms related to prior infection than is captured with conventional tests. Traditional clinical assessment is not expected to be particularly informative in relating symptoms to a past SARS-CoV-2 infection.Peer reviewe

Age-inclusive Arctic outdoor spaces: a policy review in four Nordic countries

In the last decade, policy strategies were adopted in response to population ageing in the Nordic countries. Governmental actions have to be evaluated in terms of their efficacy. The objective of this article is to identify and review the policies related to age-inclusive outdoor spaces in the Arctic regions of Nordic countries. Our analysis focuses on central government white papers that address the older adults in Finland, Norway, Sweden, and Iceland. A review of such policy documents provides insights into the predominant understandings of older adults and healthy ageing. Moreover, such analysis may identify “blind spots” in the national policies, especially regarding the sparsely researched northernmost and rural Arctic territories. Our results demonstrate how the older populations in the Nordic Arctic and their access to outdoor spaces are addressed in the policy documents. We found that with few exceptions, the older people of the rural Arctic is strikingly absent in the Nordic national governmental papers. Moreover, access to outdoor spaces is mentioned in general terms, and specific challenges of the rural Arctic context, such as the harsh climate, long winters and geographical distances are not addressed. The noticed omissions might be the result of “urban-rural”, “south-north”, “indoor-outdoor”, and “generalisation” biases.Validerad;2024;Nivå 2;2024-04-15 (signyg);Funder: The Nordic Arctic Co-operation Programme;Full text license: CC BY-NC</p

Age differences in functioning and contextual factors in community-dwelling stroke survivors: A national cross-sectional survey

Our study aimed to map functioning and contextual factors among community-dwelling stroke survivors after first stroke, based on the International Classification of Functioning, Disability and Health (ICF), and to explore if these factors differ among older-old (75 years and older), younger-old (65–74 years), and young (18–65 years) stroke survivors.  Methods A cross-sectional population-based national survey among community-dwelling stroke survivors, 1–2 years after their first stroke. Potential participants were approached through hospital registries. The survey had 56.2% response rate. Participants (N = 114, 50% men), 27 to 94 years old (71.6±12.9 years), were categorized as: older-old (n = 51), younger-old (n = 34) and young (n = 29). They answered questions on health, functioning and contextual factors, the Stroke Impact Scale (SIS) and the Behavioural Regulation Exercise Questionnaire 2. Descriptive analysis was used, along with analysis of variance for continuous data and Fisher´s exact tests for categorical variables. TukeyHSD, was used for comparing possible age-group pairings. Results The responses reflected ICF´s personal and environmental factors as well as body function, activities, and participation. Comparisons between age-groups revealed that the oldest participants reported more anxiety and depression and used more walking devices and fewer smart devices than individuals in both the younger-old and young groups. In the SIS, the  oldest participants had  ion has good access to smart devices which can be used in community integration. Moreover, our results support the need for analysis in subgroups of age among the heterogenous group of older individuals in this population. Conclusion These findings provide important information on needs and opportunities in communitybased rehabilitation for first-time stroke survivors and reveal that this populatlusion These findings provide important information on needs and opportunities in community based rehabilitation for first-time stroke survivors and reveal that this population has good access to smart devices which can be used in community integration. Moreover, our results support the need for analysis in subgroups of age among the heterogenous group of older individuals in this population. lower scores than both younger groups in the domains of activities of daily living and mobility   </p

Lifelong Reduction in LDL (Low-Density Lipoprotein) Cholesterol due to a Gain-of-Function Mutation in LDLR

To access publisher's full text version of this article click on the hyperlink belowBackground: Loss-of-function mutations in the LDL (low-density lipoprotein) receptor gene (LDLR) cause elevated levels of LDL cholesterol and premature cardiovascular disease. To date, a gain-of-function mutation in LDLR with a large effect on LDL cholesterol levels has not been described. Here, we searched for sequence variants in LDLR that have a large effect on LDL cholesterol levels. Methods: We analyzed whole-genome sequencing data from 43 202 Icelanders. Single-nucleotide polymorphisms and structural variants including deletions, insertions, and duplications were genotyped using whole-genome sequencing-based data. LDL cholesterol associations were carried out in a sample of >100 000 Icelanders with genetic information (imputed or whole-genome sequencing). Molecular analyses were performed using RNA sequencing and protein expression assays in Epstein-Barr virus-transformed lymphocytes. Results: We discovered a 2.5-kb deletion (del2.5) overlapping the 3' untranslated region of LDLR in 7 heterozygous carriers from a single family. Mean level of LDL cholesterol was 74% lower in del2.5 carriers than in 101 851 noncarriers, a difference of 2.48 mmol/L (96 mg/dL; P=8.4×10-8). Del2.5 results in production of an alternative mRNA isoform with a truncated 3' untranslated region. The truncation leads to a loss of target sites for microRNAs known to repress translation of LDLR. In Epstein-Barr virus-transformed lymphocytes derived from del2.5 carriers, expression of alternative mRNA isoform was 1.84-fold higher than the wild-type isoform (P=0.0013), and there was 1.79-fold higher surface expression of the LDL receptor than in noncarriers (P=0.0086). We did not find a highly penetrant detrimental impact of lifelong very low levels of LDL cholesterol due to del2.5 on health of the carriers. Conclusions: Del2.5 is the first reported gain-of-function mutation in LDLR causing a large reduction in LDL cholesterol. These data point to a role for alternative polyadenylation of LDLR mRNA as a potent regulator of LDL receptor expression in humans. Keywords: cardiovascular disease; genetics; lipids; microRNA; polyadenylation.deCODE genetics/Amgen, In

Humoral Immune Response to SARS-CoV-2 in Iceland.

To access publisher's full text version of this article click on the hyperlink belowBackground: Little is known about the nature and durability of the humoral immune response to infection with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). Methods: We measured antibodies in serum samples from 30,576 persons in Iceland, using six assays (including two pan-immunoglobulin [pan-Ig] assays), and we determined that the appropriate measure of seropositivity was a positive result with both pan-Ig assays. We tested 2102 samples collected from 1237 persons up to 4 months after diagnosis by a quantitative polymerase-chain-reaction (qPCR) assay. We measured antibodies in 4222 quarantined persons who had been exposed to SARS-CoV-2 and in 23,452 persons not known to have been exposed. Results: Of the 1797 persons who had recovered from SARS-CoV-2 infection, 1107 of the 1215 who were tested (91.1%) were seropositive; antiviral antibody titers assayed by two pan-Ig assays increased during 2 months after diagnosis by qPCR and remained on a plateau for the remainder of the study. Of quarantined persons, 2.3% were seropositive; of those with unknown exposure, 0.3% were positive. We estimate that 0.9% of Icelanders were infected with SARS-CoV-2 and that the infection was fatal in 0.3%. We also estimate that 56% of all SARS-CoV-2 infections in Iceland had been diagnosed with qPCR, 14% had occurred in quarantined persons who had not been tested with qPCR (or who had not received a positive result, if tested), and 30% had occurred in persons outside quarantine and not tested with qPCR. Conclusions: Our results indicate that antiviral antibodies against SARS-CoV-2 did not decline within 4 months after diagnosis. We estimate that the risk of death from infection was 0.3% and that 44% of persons infected with SARS-CoV-2 in Iceland were not diagnosed by qPCR

Many sequence variants affecting diversity of adult human height.

Contains fulltext : 69151.pdf (publisher's version ) (Closed access)Adult human height is one of the classical complex human traits. We searched for sequence variants that affect height by scanning the genomes of 25,174 Icelanders, 2,876 Dutch, 1,770 European Americans and 1,148 African Americans. We then combined these results with previously published results from the Diabetes Genetics Initiative on 3,024 Scandinavians and tested a selected subset of SNPs in 5,517 Danes. We identified 27 regions of the genome with one or more sequence variants showing significant association with height. The estimated effects per allele of these variants ranged between 0.3 and 0.6 cm and, taken together, they explain around 3.7% of the population variation in height. The genes neighboring the identified loci cluster in biological processes related to skeletal development and mitosis. Association to three previously reported loci are replicated in our analyses, and the strongest association was with SNPs in the ZBTB38 gene