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Purpose:The aim of the present paper was to study preferences for web based self-administered questionnaires (web SAQs) vs. paper-based self-administered questionnaires (paper SAQs) and to evaluate the feasibility of using web SAQs in patients referred to cardiac, lung, occupational and cancer rehabilitation programs. Methods:The patients were approached by mail and given the choice to answer the compulsory SAQs either on paper or on a web-based platform. Results:Hundred and twenty seven out of 183 eligible patients (69.3%) were willing to participate and 126 completed the study. Web SAQs were preferred by 77.7%, and these patients were significantly younger, more often cohabiting and tended to have higher level of education than paper SAQ users. Mean number of data missing per patient was less among the web SAQ users than the paper SAQ users (0.55 vs. 2.15,p < 0.001). Costs related to human resources were estimated to be 60% lower with web SAQs compared to paper SAQs. Conclusions:Web SAQs were well accepted among the patients scheduled for rehabilitation, led to less missing data and considerable cost savings related to human resources. Patients referred to rehabilitation should be offered the choice to complete self-administered questionnaires on internet platforms when internet access is common and available.Implications for RehabilitationThe high acceptability of web-based self-administered questionnaires among rehabilitation patients suggests that internet platforms are suitable tools to collect patient information for rehabilitation units.Web-based modes of patient data collection demonstrate low number of missing data and can therefore improve the quality of data collection from rehabilitation patients.Use of web-based questionnaires considerably reduces administrative costs of data collection in rehabilitation settings compared to traditional pen and paper methods. [ABSTRACT FROM PUBLISHER]

To study psychological distress and fatigue among persons with spina bifida (SB) 50 years or older and living in Norway. In 2017, cross-sectional data were collected (n = 30). The Hospital Anxiety and Depression Scale (HADS) and the Fatigue Severity Scale (FSS) were used. Descriptive statistics, non-parametric tests, and Spearman correlations were performed. Relevant information from previous studies on adults with chronic spinal cord injury (SCI) and the general population, were collected for comparison. Participants were 18 women and 12 men, mean age 57.5 (SD 5.6), 26 with myelomeningocele, and six with hydrocephalus. Thirty percent scored above the HADS-A- and 20% above the HADS-D thresholds, thus in the same range as previous studies of SB, but higher compared to persons with SCI and norms. HADS-D correlated with pain and FSS scores. Forty percent reported fatigue symptoms (9/15 without hydrocephalus, 3/6 with hydrocephalus). The study revealed a high prevalence of fatigue symptomatology among middle-aged and older adults with SB. Symptoms of anxiety and depression were more common than among persons with chronic SCI and norms. SB follow-ups should include awareness of psychological distress and fatigue, and investigate pain and medication side effects among possible influencing factors. Clinicians treating adult persons with SB should be aware of possible psychological distress and fatigue symptomatology among these patients. We suggest an initial screening for psychological distress and fatigue in persons with SB during follow-up visits and rehabilitation. Interventions to reduce pain may influence levels of psychological distress and/or fatigue in patients with SB. Clinicians should enquire about the effects of medication on fatigue when assessing and prescribing new medications; a thorough medication review helps to assess the benefits and risks. [ABSTRACT FROM AUTHOR]

Follow-up care (FU-care) and self-management are recognized as important to ensure prolonged effects of rehabilitation. Objectives of this study were to explore current FU-care and self-management after specialized rehabilitation for patients with rheumatic and musculoskeletal diseases. This multicentre cohort study included 523 patients who self-reported need and plans for FU-care and plans for self-management activities (SMAs) at rehabilitation discharge. The FU-care received and adherence to SMA were self-reported after 4-, 8-, and 12-months. Predictors for received FU-care and adherence to SMA were explored in multiple logistic regression models. Plans for FU-care were significantly associated with received FU-care. Younger age, better coping skills, and performing regular social activities and hobbies were significant predictors for received FU-care. Throughout the follow-up year, 221 (51%) participants had adherence to their SMA plans. Older age, regular physical activity, more severe pain, and performing regular social activities and hobbies were significant predictors for adherence to SMA. Participants with SMA adherence more often reported planned FU-care, and more frequently received the FU-care they needed. Planning FU-care should be integrated in specialized rehabilitation. Patients with poor coping skills and sedentary lifestyle may need more support over longer time to implement behavioral changes for healthy self-management. Planning follow-up should be integrated in specialized rehabilitation as it supports self-management and receiving follow-up at home. Patients with sedentary lifestyle, poor coping skills, and depression may need more support over longer time to implement healthy self-management. Structure and routines in daily life enhance self-management. [ABSTRACT FROM AUTHOR]

To study patient experiences with physical activity among persons with Loeys-Dietz- or vascular Ehlers-Danlos syndrome. A postal questionnaire survey in 2018. Seventy adults with molecularly verified Loeys-Dietz syndrome types 1-4, or vascular Ehlers-Danlos syndrome recruited through a National Resource Centre for Rare Disorders in Norway. The response rate was 74%, (Loeys-Dietz n = 34, vascular Ehlers-Danlos n = 18), aged 18 to 68 years, 58% women. In total, 88.5% reported they had received advice regarding physical activity and most (77%) had modified their habits. Fifty percent had an appropriate- and 40% a low mean physical activity sum score. Another 10% had too high physical activity levels due to high intensity scores. Lower scores with the Fatigue Severity Scale (p = 0.033) and the anxiety subscale of the Hospital Anxiety and Depression Scale (p = 0.021), were associated with high physical activity levels. About a third reported unmet rehabilitation needs. Many adults with Loeys-Dietz- or vascular Ehlers-Danlos syndrome may have a potential to reach more favorable physical activity levels by increasing the frequency and duration of activities. Future directions should include evaluation of effects of professional-led practical and safe physical activity sessions as well as customized multidisciplinary rehabilitation programs for these patient groups. [ABSTRACT FROM AUTHOR]

To explore participation in real-life activities during early childhood, compare children's participation based on motor function and investigate relationships between participation and parental empowerment. Data derived from the Cerebral Palsy Follow-up Program (CPOP) in Norway and the research registry Habilitation Trajectories, Interventions, and Services for Young Children with CP (CPHAB). Fifty-six children (12–56 months, GMFCS levels I–IV, MACS levels I–V) and their families were included. Frequency and enjoyment of participation were assessed by the Child Engagement in Daily Life Questionnaire and parental empowerment in family and service situations by the Family Empowerment Scale at least twice during the preschool years. Differences between groups based on motor function were explored by the Kruskal–Wallis tests. A linear mixed model was conducted to explore relationships between child participation and parental empowerment. Similarities and differences in participation between children at different motor function levels varied between the activities explored. Fluctuations in frequency and stable enjoyment scores over time were most common. A statistically significant relationship was revealed between child participation and parental empowerment in family situations, but not in service situations. Child participation appears as context-dependent and complexly influenced by both motor function and parental empowerment. This supports a focus on transactional processes when exploring and promoting child participation. Family and recreational activities represent real-life contexts providing opportunities for interactions and experiences supporting development and learning. Children with CP appreciate a wide range of activities in the home and community, which emphasizes the importance of providing opportunities for such participation in order to fulfill their desires and interests. Child participation appears as complexly influenced by the unique activity setting, motor function and characteristics of the family environment, requiring attention to transactional processes when aiming to explore and promote participation. [ABSTRACT FROM AUTHOR]

To compare stroke-specific health related quality of life in two country-regions with organisational differences in subacute rehabilitation services, and to reveal whether organisational factors or individual factors impact outcome. A prospective multicentre study with one-year follow-up of 369 first-ever stroke survivors with ischaemic or haemorrhagic stroke, recruited from stroke units in North Norway (n = 208) and Central Denmark (n = 161). The 12-domain Stroke-Specific Quality of Life scale was the primary outcome-measure. The Norwegian participants were older than the Danish (Mage= 69.8 vs. 66.7 years, respectively), had higher initial stroke severity, and longer stroke unit stays. Both cohorts reported more problems with cognitive, social, and emotional functioning compared to physical functioning. Two scale components were revealed. Between-country differences in the cognitive-social-mental component showed slightly better function in the Norwegian participants. Depression, anxiety, pre-stroke dependency, initial stroke severity, and older age were substantially associated to scale scores. Successful improvements in one-year functioning in both country-regions may result from optimising long-term rehabilitation services to address cognitive, emotional, and social functioning. Stroke-Specific Quality of Life one-year post-stroke could be explained by individual factors, such as pre-stroke dependency and mental health, rather than differences in the organisation of subacute rehabilitation services. The stroke-specific health related quality of life (SS-QOL) assessment tool captures multidimensional effects of a stroke from the perspective of the patient, which is clinically important information for the rehabilitation services. The cognitive-social-mental component and the physical health component, indicate specific functional problems which may vary across and within countries and regions with different organisation of rehabilitation services. For persons with mild to moderate stroke, longer-term functional improvements may be better optimised if the rehabilitation services particularly address cognitive, emotional, and social functioning. [ABSTRACT FROM AUTHOR]

Purpose: The aim was to investigate the feasibility of introducing a novel transdiagnostic occupational rehabilitation program delivered in groups mixing participants with chronic pain, chronic fatigue and common mental disorders. Materials and methods: Observational data on group climate and individual participation were triangulated with qualitative data from focus group interviews on the participants' experiences with transdiagnostic groups. Results: The study included 222 participants receiving a temporary work disability benefit. Self-reported chronic pain (75%), chronic fatigue (79%), and mental distress (62%) were prevalent and the majority reported overlapping conditions (78%). Program completion among participants was high (96%). Those completing participated actively (95%) in the program. Overall group climate was stable with moderately high engagement. Participants with clinically confirmed mental disorders (22%) showed similar outcomes. Self-reported problems with "working in a group" prior to rehabilitation were not associated with how participants experienced group climate. Qualitative data supported the findings of positive participant experiences with transdiagnostic group settings. Conclusions: Transdiagnostic groups showed high participation rates, moderately high group engagement across symptom profiles and positive participant experiences. Implementing transdiagnostic occupational rehabilitation in groups mixing participants with chronic pain, chronic fatigue and common mental disorders was feasible and acceptable to participants. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this study was to explore if and how immigrant women suffering from chronic pain experience and maintain their dignity, during rehabilitation. Methods: The study was designed as a field study, with participant observation and in-depth interviews. Participant observations were carried out during a rehabilitation course for 14 immigrant women on an outpatient clinic at a rehabilitation hospital in southern Norway. In-depth interviews were performed after the rehabilitation period. Hermeneutic analysis was applied to interpret the data. Results: Findings show that the immigrant women experienced dignity by being seen, respected and believed by family-members, healthcare personnel and other patients at the outpatient clinic. Moreover, they maintained their dignity through a sense of their own value, integrity, religious faith and hope for the future. Conclusions: The immigrant women maintained and protected their dignity by finding strength, pride, and self-worth in their religion and through their family-members' affection. Taking responsibility for themselves and others and experiencing fellowship and equality with other women, they enhanced their dignity during their rehabilitation process. The caring attitudes and behavior of some healthcare personnel promoted patient dignity. They also gained hope and dignity by experiencing goodness, cultural competence, and sensitivity from healthcare personnel. [ABSTRACT FROM AUTHOR]

Purpose:The aim of this study was to test the validity and reliability of the translated Norwegian version of the Chronic Pain Acceptance Questionnaire (CPAQ-20) and the shorter version CPAQ-8 based on the same data. Method:The sample consisted of 120 women with chronic widespread musculoskeletal pain (CWP). The respondents completed CPAQ-20 and visual analogue scales (pain, fatigue, sleep problems and depression), General Health Questionnaire-12, The Pain Catastrophizing Scale, Fibromyalgia Impact Questionnaire and SF-8. Confirmatory factor analyses were performed on a one-factor baseline model, the previous validated CPAQ-20 and CPAQ-8 models, as well as an exploratory generated model based on the current sample. Results:The two-factor model of CPAQ-20 and a two-factor model of CPAQ-8 obtained adequate model fit and outperformed the baseline model. The exploratory factor, analysis-generated two-factor model obtained only a marginally better fit, supporting the two-dimensional model of CPAQ-20. CPAQ-20 and CPAQ-8 had Cronbach’s alphas between 0.75 (Pain Willingness subscales both versions) and 0.85. Both scales correlated significantly in the hypothesised direction with all the other scales. Conclusion:The Norwegian versions of CPAQ-20 and CPAQ-8 are reliable assessment tools with good construct validity for measurement of acceptance. Future studies should validate the scales in other Norwegian samples.Implication for RehabilitationCPAQ-20 and CPAQ-8 are valid Norwegian instruments for measuring acceptance of pain.Acceptance of pain is an important process in the rehabilitation of persons with chronic widespread pain.Treatment models supporting acceptance can now be developed and measured further in Norway. [ABSTRACT FROM PUBLISHER]

Purpose:To examine subjective health-related quality of life (HRQoL) in adults with congenital unilateral upper limb deficiency (UULD) in Norway and to explore the associations between demographic and clinical factors and HRQoL. Method:Cross-sectional study comparing HRQoL, measured by SF-36, among adults with UULD and an age- and gender-matched control group from the Norwegian general population (NGP). Results:Seventy-seven respondents, median age 42 years (range: 20–82); 71% were women. Most had left-sided (61%), below elbow (53%), transverse (73%) deficiency. Compared to the NGP, the UULD group reported reduced HRQoL on all SF-36 subscales except for the role emotional (RE) scale (p=0.321), mental health (MH) (p=0.055) and mental component summary (MCS) (p=0.064). The greatest difference was on the bodily pain (BP) scale (point difference of 20.0). Multiple linear regression models showed significant association between several physical- and mental SF-36 subscales and occupational status, occurrence of comorbidity and chronic pain. Conclusions:Persons with UULD reported reduced HRQoL on most SF-36 subscales, mostly in the physical health domain. Employment status, occurrence of comorbidity and chronic pain seem to have a negative impact on the HRQoL. Measures that can reduce pain and loss of function should be given particular attention in UULD rehabilitation.Implications for RehabilitationPersons with congenital unilateral upper limb deficiency (UULD) who experience pain and discomfort should seek professional help for evaluating their everyday coping strategies.Professionals who meet persons with UULD should examine anomalies, comorbidity, pain and employment status before choosing advices and actions.Individually adapted grip-improving devices, environments, physical exercise and pain management programs should be implemented early to reduce pain, loss of function and decreased HRQoL.A multidisciplinary approach is often necessary when counseling persons with UULD. [ABSTRACT FROM PUBLISHER]

Purpose: To describe an adult population with congenital limb deficiency (CLD) recruited through the National Resource Centre for Rare Disorders (TRS) in Norway: (1) demographic factors, (2) clinical features, (3) pain and (4) use of health care and welfare services.Methods: Cross-sectional study. In 2012, a postal questionnaire was sent to 186 eligible persons with CLD, age 20 years and older.Results: Ninety-seven respondents, median-age 39 years (range: 20–82); 71% were women. The population was divided into two subgroups: (1) unilateral upper-limb deficiency (UULD)n = 77, (2) multiple and/or lower-limb deficiency (MLD/LLD). About 40% worked full-time, 18% received disability pensions and 64% reported chronic pain, mostly bilateral pain. Grip-improving devices were used more often than prostheses; 23% were previous prosthesis users. Use of health care and welfare services are described. No significant differences were found between the subgroups regarding pain or employment status.Conclusions: Persons with CLD reported increased prevalence of chronic pain, mostly bilateral, and increased prevalence of early retirement. A greater focus on the benefits of the use of assistive devices, the consequences of overuse and vocational guidance may moderate pain and prevent early retirement. Further studies of more representative samples should be conducted to confirm our findings.Implications for RehabilitationMost adults with congenital limb deficiency (CLD) live ordinary lives and experience normal life events. However, several report chronic pain and retire before normal retirement age.In spite of free and accessible prosthetic services, a large fraction chooses not to use prosthesis, more use grip-improving devices for specific activities. These preferences should be acknowledged by rehabilitation specialists.Focus on individually adapted environments, more information about the consequences of overuse, and vocational guidance may moderate pain and prevent early retirement. [ABSTRACT FROM AUTHOR]