Self-care Domains Research Articles

Child welfare workers’ self-care activities and impacts on health and well-being

Child welfare workers experience high levels of emotional and physical health problems stemming from their work. Though self-care among social services professionals is often encouraged, only recently have scholars begun to examine the self-care behaviors of child welfare workers. Despite plentiful research on the positive impact of self-care in reducing stress and burnout, limited research with child welfare workers shows only modest engagement in self-care practices. The present study used closed and open-ended survey responses to explore the type and frequency of self-care activities of a cohort of child welfare workers in Florida (n = 1006), and the impact of those activities on workers’ health and well-being, to include measures of burnout, secondary traumatic stress, job satisfaction, and work-life balance. Workers’ responses to open-ended survey questions were analyzed for themes across physical, emotional, and spiritual self-care domains. Chi-square tests determined differences in physical and emotional health ratings for workers who regularly engaged in self-care practices. Linear regression results showed that physical and motional self-care practices were associated with workers’ well-being. The overwhelming participation in self-care activities among child welfare workers and their impact on their health and well-being suggests the importance of an organizational approach to self-care and well-being in the workplace.

Self-report versus performance based executive functioning in people with psychotic disorders

BackgroundAlthough executive functioning is often measured using performance-based measures, these measures have their limits, and self-report measures may provide added value. Especially since these two types of measures often do not correlate with one another. It thus has been proposed they might measure different aspects of the same construct. To explore the differences between a performance-based measure of executive functioning and a self-report measure, we examined their associations in patients with a psychotic disorder with the following: other neurocognitive measures; psychotic symptoms; anxiety and depression symptoms, and daily-life outcome measures. MethodThis cross-sectional study consisted of baseline measures collected as part of a cohort study of people with a psychotic disorder (the UP'S study; n = 301). The Behavioral Rating Inventory of Executive Functioning Adult version (BRIEF-A) was used to assess self-rated executive functioning, and the Tower of London (TOL) to assess performance-based executive functioning. Generalized linear models (GLM) were used with the appropriate distribution and link function to study the associations between TOL and BRIEF-A, and the other variables, including the Brief Assessment of Cognition in Schizophrenia (BACS), the Positive and Negative Symptoms Scale-Remission (PANSS-R), the General Anxiety Disorder – 7 (GAD-7), the Patient Health Questionnaire – 9 (PHQ-9) and the WHO Disability Assessment Schedule 2.0 (WHODAS 2.0). Model selection was based on the Wald test. ResultsThe TOL was associated with other neurocognitive measures, such as verbal list learning (β = 0.24), digit sequencing (β = 0.35); token motor task (β = 0.20); verbal fluency (β = 0.24); symbol coding (β = 0.43); and a screener for intelligence (β = 2.02). It was not associated with PANNS-R or WHO-DAS scores. In contrast, the BRIEF-A was associated not with other neurocognitive measures, but with the PANSS-R (β = 0.32); PHQ-9 (β = 0.52); and GAD-7 (β = 0.55); and with all the WHODAS domains: cognition domain (β = 0.54), mobility domain (β = 0.30) and selfcare domain (β = 0.22). ConclusionPerformance-based and self-report measures of executive functioning measure different aspects of executive functioning. Both have different associations with neurocognition, symptomatology and daily functioning measures. The difference between the two instruments is probably due to differences in the underlying construct assessed.

Impact of caregiver relationship on self-care in patients with Parkinson's disease: A cross-sectional study using Riegel's theory of self-care of chronic illness.

To explore how the characteristics of patients and caregivers affect self-care in patients with Parkinson's disease (PD). A multicentre cross-sectional study. We followed the STROBE checklist. Parkinson's disease patients aged 50 years and older and their caregivers were recruited from two tertiary hospitals and the Korean Parkinson's Disease Association website. Patient characteristics, including social support, relationship quality with caregivers, self-care efficacy and self-care, were analysed. Caregiver characteristics were also evaluated, including caregiving duration, social support, relationship quality with patients, contribution to patients' self-care efficacy and contribution to patients' self-care. The characteristics of patients and caregivers (103 pairs) were hierarchically regressed into patient self-care domains (maintenance, monitoring and management). Most patients and caregivers gave a self-care efficacy and self-care management rating of moderate. In three regression models, patient self-care efficacy was positively related to three domains of patient self-care. Self-care maintenance decreased as patients' disease duration increased. Self-care monitoring was positively related to the education level of patients and caregiving duration. Self-care management showed an inverse relationship with caregiving duration and a positive relationship with caregiver contribution. Self-care efficacy was important in promoting PD patients' self-care maintenance, monitoring and management. The contributions of caregivers were also critical in increasing PD patients' self-care management. To increase patients' self-care efficacy and self-care, educational interventions containing information about the disease, symptom management, and problem-solving should be implemented. Since caregivers are deeply involved in patients' self-care, educational interventions for caregivers should also be provided. This study closed the literature gap by examining the self-care efficacy and self-care of Korean PD patients. Findings demonstrated the importance of caregiver roles on patients' self-care and health. Two tertiary hospitals and the Korean Parkinson's Disease Association assisted during the recruitment process.

B - 57 An Analysis of the Activities of Daily Living Questionnaire (ADLQ): Is Executive Dysfunction Associated with Functional Decline?

The ADLQ measures the ability to perform basic and instrumental activities of daily living (ADLs). Several factors, including cognition, may play a role in someone's ability to perform ADLs. The purpose of this study was to understand how executive functioning (EF) impacts abilities measured by the ADLQ. Data were retrospectively collected from a mixed sample of patients with cognitive impairment (MCI: 29; dementia: 34) who underwent neuropsychological evaluation at a private practice in the Portland, Oregon area (n = 63, mean age = 76.65, mean education = 14.92years). Patients with a history of moderate-to-severe TBI or severe psychiatric history were excluded. Six ADLQ scales and measures of EF (phonemic fluency, DKEFS Tower, Trails B, Stroop Interference) were analyzed using nonparametric Spearman's rank correlations. A p-level of 0.01 was used to reduce likelihood of type I errors. There was a negative correlation between phonemic fluency and both self-care (ρ= -0.485, p = 0.002) and shopping (ρ= -0.474, p = 0.003). There was a negative correlation between travel and performance on both Trails B (ρ= -0.490, p = 0.009) and Stroop Interference (ρ= -0.634, p = 0.000). For the above EF tests, worse performance was associated with more impairment in the associated ADLs. Other correlations were not significant. Performance on certain EF tests is associated with impairment in the domains of self-care, shopping, and travel. Executive dysfunction appears related to functional decline on the ADLQ, but further analysis using larger samples is warranted to better understand this relationship.

Early development and adaptive functioning in children with Bardet-Biedl syndrome.

This study had two aims. Aim one investigated achievement of 10 developmental milestones in children with Bardet-Biedl syndrome (BBS). Aim one data were derived from retrospective responses by caregivers of individuals with BBS who are enrolled in the Clinical Registry Investigating Bardet-Biedl syndrome (CRIBBS). CRIBBS is a natural history registry acquiring serial observations. Aim two investigated early adaptive skills using the Adaptive Behavior Assessment System (ABAS-II 0-5) completed by caregivers of children with BBS aged from 0 to 5. There were 652 individuals with milestone information (with some variability based on availability of information for specific milestones), and 101 individuals (including 95 among the 652) with ABAS-II information. Results revealed wide-ranging delays in adaptive skills, particularly in the domain of Self-Care. Expressive language appears to be the most frequently delayed developmental milestone. We found a difference by BBS genotype wherein individuals with BBS1 had higher adaptive/developmental scores than individuals with BBS10. Age also carried a significant association with adaptive skills diverging farther from a normative trajectory as children with BBS progress through early childhood.

Reliability and Validity of the Avoidance of Daily Activities Photo Scale for Patients With Shoulder Pain (ADAP Shoulder Scale).

The Avoidance of Daily Activities Photo Scale for Patients With Shoulder Pain (ADAP Shoulder Scale) was developed to assess pain-related avoidance behavior during daily activities in people with shoulder pain. However, its measurement properties must be verified according to international guidelines. As such, this study investigated the following 4 measurement properties of the ADAP Shoulder Scale: reliability, measurement errors, convergent validity, and floor and ceiling effects. The sample comprised 100 individuals with chronic shoulder pain (43 men and 57 women; mean duration of symptoms of 29.7 [SD = 89.0] months; mean age of 44.9 [SD = 15.9] years). The mean test-retest reliability range was 5days via the intraclass correlation coefficient (ICC). Measurement errors included the standard error of measurement and the minimal detectable change. Convergent validity was analyzed by applying the Pearson correlation with the Tampa Scale for Kinesiophobia, Pain Catastrophizing Scale, and Shoulder Pain and Disability Index. The ADAP Shoulder Scale showed excellent test-retest reliability, both in all domains and in the total score [ICC(2,1) = 0.94; 95% CI = 0.92-0.96]. The standard errors of measurement for the free-movement, high-effort, and self-care domains were 8.1%, 6.0%, and 7.6%, respectively. The minimal detectable change for the total score of the ADAP Shoulder Scale was 16.0%. The total score of the ADAP Shoulder Scale was low to moderately correlated with the total scores of the Tampa Scale for Kinesiophobia (r = 0.52), Pain Catastrophizing Scale (r = 0.30), and Shoulder Pain and Disability Index (r = 0.72). No floor or ceiling effects were detected in the total score. The ADAP Shoulder Scale is a reliable, valid instrument for assessing avoidance behavior in adults who have chronic shoulder pain and are not athletes. This study provides evidence that the ADAP Shoulder Scale is appropriate for clinical and practical use in people with chronic shoulder pain.

Quality of Life at a 10-Year Follow-Up of Children Born Preterm with Post-Hemorrhagic Ventricular Dilatation: A Cohort Study

Background: Post-haemorrhagic ventricular dilatation (PHVD) is commonly seen in extremely preterm babies, carries significant morbidity, and may cause neonatal mortality. There is a lack of literature on the subsequent health-related quality of life (HRQoL) in childhood. The aim of this work was to assess the quality of life of preterm babies after PHVD at 10 years of age using two validated questionnaires. Methods: Children with PHVD were assessed as part of the 10-year follow-up of the drainage, irrigation, and fibrinolytic therapy trial. The HRQoL outcome was measured using parent-reported EQ-5D-5L and HUI-3 questionnaires. Both questionnaires produce a summary score anchored at 1 (best health) and 0 (equivalent to death). Results: Median scores at follow-up were 0.65 (IQR 0.36–0.84; n = 44) for the EQ-5D-5L and 0.52 (IQR 0.22–0.87; n = 51) for the HUI-3. Similar proportions had a score below 0.2 (HRQoL [20%], HUI-3 [21%]), while 20% had a HRQoL score above 0.80 compared to 34% using HUI-3. The most severe problems from the EQ-5D-5L were reported in the self-care, mobility, and activity domains, while the HUI-3 reported worse problems in ambulation, cognition, and dexterity domains. Infants with worse (grade 4) intraventricular haemorrhage had poorer HRQoL than those with grade 3 bleeds. Conclusion: Children who survive to 10 years of age after PHVD have on average lower HRQoL than their peers. However, the reported range is wide, with a quarter of the children having scores above 0.87 (similar to population norms), while a fifth have very low HRQol scores. Impact was not uniform across domains, with mobility/ambulation a concern across both measures.

Poster (Clinical/Best Practice Implementation) ID 1998248

Background It is essential that individuals with spinal cord injury set their goals prior to their peripheral nerve transfer (PNT) surgery. Goal setting is a significant factor in pre-operative planning and is one way in which we can track performance and outcomes for these patients. Objectives To describe goal types identified by patients managed in the PNT-SCI rehab program at Lyndhurst-UHN. Cite and report the COPM outcomes in the domains of Self-care and Productivity. Methods A retrospective case series was conducted (n=14), charts were reviewed for type of goals and patient’s perception of goal attainment using COPM for a case series of three patients with tetraplegia who received PNT-SCI surgery and comprehensive rehabilitation. The changes in COPM are reported from baseline to 12 months post-surgery. Each patient identified three goals pre-surgery; their goals and the COPM were used to measure change over time. Results Ninety two percent of the identified goals were in the area of Self Care, and 8% were in the Productivity areas. Two of the patients who received PNT-SCI rehabilitation had an increase of 1 on the COPM, while one individual regressed by 2 points. That individual did not receive comprehensive rehabilitation. Conclusion It is known that recovery after PNT-SCI surgery can take 24 or more months. We reported COPM change scores at 12 months post surgery. The MCID is two points for COPM, ideally over 24 months we will see MCID of three or higher.

Heterogeneity of Functional Improvement in Patients with Spinal Tetraplegia: a Retrospective Observational Longitudinal Study

INTRODUCTION. The prevalence of severe spine and spinal cord injuries worldwide is increasing, while the structure and nature of recovery of lost functions remain poorly understood. AIM. To study the variability of functional activities during continued rehabilitation to distinguish pure rehabilitation goals MATERIAL AND METHODS. 190 patients with C4D1 tetraplegia 1860 years old whose were under clinical and functional follow up over a period for 57 years after spinal cord injury were examined. They were examed using the motor section of the FIM scale (FIMm), the VLT scale. The rehabilitation program was standardized and based on the National Clinical Guidelines for physical rehabilitation in spinal cord injured patients. RESULTS. At admission, the age of the patients was 31 (24.0; 43.0) years, the proportion of patients with DU C4C6 was 117 (62 %), with complete damage types A and B was 134 (70 %) patients, men 151 (79 %). Functional improvement was 19 (12.0; 28.0) points on the VLT scale; 14 (5.0; 21.0) points on the FIMm scale over the entire observation period, and was predominantly noted in the first rehabilitation cycle. The proportion of patients completely independent increased on FIMm activities: eating by 25 %, dressing the upper body by 33 %, dressing the lower body by 20 %, self-care domain by +34 %, wheelchair transfer by 21 %, walking by 5 %, and the proportion of patients completely dependent decreased: eating by 9 %, upper dressing by 13 %, lower dressing by 12 %, self-care domain by 7 %, wheelchair transfer by 21 %, wheelchair mobility by 11 %, and walking by 4.5 %. Changes on the VLT scale domains were balance domain 14 %, 1 finger 18 %, hand 26 %, and manipulation 11 %. The gain in food intake activity (FIM) was higher in patients with DU C6C8 (4050 %) and incomplete motor damage (43 %), on the VLT scale domains similar to C6C8 (1218 %), and incomplete motor damage (20 %). CONCLUSION. The most significant functional recovery occurred in self-care and transfer activities, as well as hand and pinch grasping.

Developing a common metric using current scales for assessing functioning in patients with knee osteoarthritis.

Various scales exist to assess different domains of functioning in knee osteoarthritis (OA). This study aimed to explore whether it is possible to develop a common metric (CM) from the frequently used scales to assess functioning in knee OA. The methodological study evaluated 411 patients (81 males, 330 females; mean age: 61.8±10.5 years; range, 41 to 88 years) with knee OA. Data from the Health Assessment Questionnaire, Oxford Knee Score, Medical Outcomes Study Short Form 36, Knee Injury and Osteoarthritis Outcome Score, Western Ontario and McMaster Universities Arthritis Index, and the Nottingham Health Profile were used, and the items focusing on self-care, mobility, and domestic activity domains based on the activities and participation component of the International Classification of Functioning, Disability, and Health were included. Concurrent calibration was performed to combine the items of the scales. The CM parameters were estimated using the Rasch measurement model. Reliability was assessed using the person separation index. The CM was utilized to generate a transformation table to convert the scale scores to each other based on the reference metric score. Each scale fitted the Rasch model. Item invariance was achieved for the CM (p=0.775). The CM had a person separation index of 0.827. Age, sex, and disease duration did not cause difference in item functions. The CM satisfied the assumptions of unidimensionality and local independence. A reliable CM was created from the commonly used scales to measure functioning in individuals with knee OA. Thus, clinicians and researchers can refer to the transformation table to directly compare scores of those scales and use them interchangeably.

Effectiveness of Telerehabilitation in Persons With Spinal Cord Injury During the COVID-19 Pandemic (TELE-SCOPE): A Single-Center, Double-Blind, Randomized Controlled Trial.

Introduction The COVID-19 pandemic has posed numerous challenges in accessing adequate healthcare services, particularly for individuals with spinal cord injury (SCI). On the other hand, telerehabilitation has emerged as a promising solution to address healthcare needs. Since there was no study during the pandemic, we started this study with the aim of assessing the efficacy of telerehabilitation for individuals with SCI during the COVID-19 pandemic. Methods This is a prospective double-blind, randomized, controlled trial conducted in a tertiary rehabilitation care center hospital. Thirty participants with traumatic spinal cord injuries (age 18 years or more, either gender) were equally randomized to the telerehabilitation or control group (1:1). Biweekly telerehabilitation sessions (each session: 30 minutes) were provided. Participants in the control group were advised to continue standard usual care as advised previously during outpatient or inpatient rehabilitation. The Spinal Cord Independence Measure (SCIM III) (primary outcome measure) and Coronavirus Anxiety Scale (CAS) (secondary outcome measure) were evaluated at baseline, four weeks, and eight weeks. Results The mean age of the intervention group was 28.2±6.9 years, and the mean age of the control group was 26.3±7.7 years. The self-care (P = 0.03) and mobility domains (P=0.01) of the SCIM III in the intervention group compared to the control group, as determined through a between-group analysis, showed statistically significant differences. CAS also showed improvement in the intervention group compared to the control group. Within-group analysis showed a mean difference of 6.3 points in the intervention group compared to the control group (1.3 points). Conclusion Telerehabilitation intervention is safe, feasible, and effective in improving self-care and mobility domains in persons with spinal cord injuries during the pandemic. It is also effective in reducing the anxiety related to the coronavirus in this population. Further research with a larger sample size and a longer duration is needed to evaluate long-term effectiveness during such crises.

Disability and its correlates among persons with bipolar disorder: Exploratory findings from the bipolar disorder course and outcome study from India (BiD-CoIN study).

This study aimed to evaluate the disability and its correlates in persons with Bipolar Disorder during the remission phase. As part of the multicentric study, 773 patients with bipolar disorder, currently in clinical remission, were evaluated for disability on the Indian Disability Assessment Evaluation Scale. About one-fifth of the participants had some level of disability in the domain of self-care, one-third had some level of disability in the interpersonal domain, one-fourth had some level of disability in communication and understanding, and a maximum proportion (43.7%) had some disability in the domain of work. Overall, about one-fifth (18.4%) were considered to have a benchmark disability (i.e., disability >40%). In terms of correlates, those with a disability had a short duration of current remission, a higher number of manic and mixed episodes, a higher mean number of total episodes, spent more time in the episodes, had lower severity of the depressive episodes, higher residual depressive and manic symptoms, had overall higher manic affective morbidity, had a higher level of cognitive deficits, and had poorer insight. A significant proportion of patients with bipolar disorder have disability in work domain, and the presence of residual symptoms of either polarity are associated with higher level of disability.

Comparative Study for Characteristics of Locomotive Syndrome in Patients with Lumbar Stenosis and Adult Spinal Deformity.

The differential diagnoses of lumbar spinal stenosis (LSS) and adult spinal deformity (ASD) have been demonstrated primarily using sagittal radiographic spinopelvic parameters. However, it is more important to know the differences in the characteristic clinical symptoms to make accurate treatment decisions. Recently, the relationship between spinal disease and Locomotive Syndrome (LS) has been reported. Additionally, the Geriatric Locomotive Function Scale-25 (GLFS-25) was reported to be a useful scale to evaluate disease severity and characteristic clinical symptoms in spinal disease. Sixty-nine consecutive patients with ASD and 196 patients with LSS who underwent spinal surgery were included. Locomotive dysfunction was evaluated using the GLFS-25 questionnaire and physical performance tests including the two-step test and the stand-up test, measured preoperatively. The correlations between sagittal spinopelvic parameters of ASD and LS were examined. All subjects with lumbar degenerative disease in the present study were diagnosed with LS preoperatively. The severity of LS in patients with LSS and ASD were statistically similar. GLFS-25 scores in the mobility and community domain were similarly poor in both groups. Several scores in the domestic life and self-care domains were significantly worse in the ASD group. Question 20 of the GLFS-25, related to load-bearing tasks and housework, was significantly associated with a large pelvic incidence in ASD patients. Lumbar degenerative disease requiring surgery severely affects the LS of older people. ASD patients had more difficulty with load-bearing tasks and housework such as cleaning the yard, carrying heavy bedding, dressing, and bathing compared to LSS patients.

The Impact of Multidisciplinary Approaches to Social Functioning on Surgical Outcomes After Surgery for Cervical Myelopathy.

Prospective cohort study. To identify the effects of multidisciplinary approaches (MAs) to improve social functioning (SF) on 1-year surgical outcomes in patients with cervical myelopathy. Despite significant improvement in cervical myelopathy, a patient's quality of life (QOL) sometimes does not improve postoperatively. A previous study revealed that SF, rather than myelopathy severity, correlated with QOL improvement after decompression surgery for cervical myelopathy. This study compared two prospective cohorts in Japan. Patients who underwent cervical laminoplasty for cervical myelopathy from 2018 to 2020 were enrolled in the control cohort. Patients who underwent the same surgery with the same indications between 2020 and 2021 were enrolled in the MA cohort. Patients in the control cohort were treated with a standard care protocol, and those in the MA cohort were treated with a multidisciplinary protocol that focused on SF improvement. The changes in the total Japanese Orthopedic Association (JOA) score and in the domains of the JOA scores (upper limb function, lower limb function, upper limb sensory, and lower limb sensory) from preoperatively to 1 year postoperatively were compared between the control and MA cohorts using a mixed-effect model. The control and MA cohorts comprised 140 and 31 patients, respectively. The improvement in the JOA score was significantly better in the MA cohort than in the control cohort ( P = 0.040). In analyses of each JOA score domain, the improvement of upper limb function was significantly better in the MA cohort than in the control cohort ( P = 0.033). Similarly, the MA cohort demonstrated significantly higher patient-reported outcomes for upper extremity function than the control cohort ( P < 0.001). In addition, the self-care domain of QOL score at 1 year postoperatively was significantly higher in the MA cohort than in the control cohort ( P = 0.047). MAs to improve/rebuild a patient's SF were effective in improving cervical myelopathy and the self-care domain of QOL. This study is the first to demonstrate the effectiveness of postoperative MAs in patients with cervical myelopathy. Level 3.

Associations between pre-stroke physical activity levels and health-related quality of life 3 months after stroke: A registry-based study (part of PAPSIGOT).

Whether pre-stroke physical activity is associated with health-related quality of life after stroke has been sparsely investigated. To explore associations between pre-stroke physical activity and health-related quality of life 3 months after stroke onset. A consecutively collected cohort study with data from registries. Included were adult patients with first stroke in the period 2014-2018 who were hospitalized at any one of the three stroke units in Gothenburg, Sweden. Pre-stroke physical activity was assessed with the Saltin-Grimby Physical Activity Level Scale (SGPALS) after hospital admission for acute stroke. Health-related quality of life was assessed with the EuroQoL 5 Dimensions 5 Level Version (EQ-5D-5L) 3 months after stroke. Data were analyzed with the Kruskal-Wallis test and binary logistic regression. Data were included from 2044 patients; 91% had ischemic stroke, 46% were female, and mean age was 73 years, with mild stroke severity median National Institute of Health Stroke Scale (NIHSS) of 2. Patients who were pre-stroke physically active reported better overall health-related quality of life by the EQ-5D-5L index value, all the domains in EQ-5D-5L, and the EuroQoL-Visual Analogue Scale (EQ-VAS) compared with pre-stroke physically inactive patients (all p < 0.001). Better health-related quality of life 3 months after stroke was associated with pre-stroke light and moderate physical activity: adjusted odds ratio (95% confidence interval), 1.9 (1.5-2.3) and 2.3 (1.5-3.4), respectively. Pre-stroke physical activity is associated with better health-related quality of life 3 months after stroke. For the domains of mobility, self-care, and pain/discomfort, physical activity with higher intensity is even more beneficial.

Construction and Validation of a Protocol Targeting Patients on Oral Anticoagulation with Warfarin.

Warfarin is an oral anticoagulant that is very useful in preventing thromboembolism, though it is considered a drug with a high risk of causing adverse events. Considering the practical challenges in controlling oral anticoagulation, the patients on warfarin could benefit from educational strategies aimed at behavioral changes, active participation in self-care, and adherence to drug therapy. The aim was to construct and validate the EmpoderACO protocol for behavioral changes in warfarin patients. The methodological steps were: definition of concepts and domains of self-care, identification of objectives, construction and selection of items, assessment of content validity, and pre-test in the target population. Relevance, adequacy, clarity, and internal reliability of the instrument's items were assessed by a multidisciplinary judges committee (JC) through the E-surv web platform, obtaining an average agreement of ≥0.91. The understanding of the instrument measured by the target population revealed adequate clarity with a coefficient average of 0.96. EmpoderACO can aid in qualifying the communication process between medical professionals and patients, as well as in improving adherence to both treatment and clinical outcomes, and can be replicated in healthcare settings.

P006 A national patient-reported experience survey (PREM) of advanced nurse practitioners in rheumatology, Ireland

Abstract Background/Aims Data collection to assess the impact of rheumatology advanced nurse practitioners (RANPs) on service quality tends to prioritise the quantitative impact on waiting lists and hospital admissions. However, patients’ views on the quality of service experienced is fundamental and essential to achieve high quality of care. Recording patients experience of care has the potential to improve quality of care. The Irish Rheumatology Nursing Forum (IRNF) wanted to measure patients' experience of care by an RANP and highlight triggers for change to enhance the quality of care delivery nationally. Methods The IRNF conducted a service evaluation postal survey using patient reported experience measure (RA PREM), previously designed, and validated for use with rheumatology patients. This tool examines eight domains of care specific to patients with inflammatory arthritis (need and preferences; care coordination; information about care; daily living; emotional support; family and friends; access to care) and is proven to be effective in measuring and monitoring patient experience. Minor adjustments were made to the questionnaire specific to the role of the advanced nurse practitioner. Patients seen by an advanced nurse practitioner within the previous 12-months were supplied with a questionnaire and a stamped address envelope during a 6-week period, in early 2022. Patient participation was voluntary, postal return of a complete survey implied consent. Results Eleven eligible rheumatology centres with twenty advanced nurse practitioners participated nationally. A total 350 questionnaires were disseminated, 188 completed questionnaires were returned, (54% response rate). In the previous 12-month period 38% of respondents had at least 2 appointments. Appointments with the advance nurse practitioner were predominantly face-to-face (73%), and a further 26% were telephone consultations. Most patients reported involvement in their care decisions, being emotionally supported, and that communication and service access were timely. Patients endorsed a good experience of care for their inflammatory arthritis (67% strongly agreed, 25% agreed). Most patients (71%) reported good control of their arthritis which allowed them to get on with usually daily life activities. Results from the self-care domain demonstrated low levels of knowledge about patient organisations and self-management programmes. Conclusion Optimising the quality of care delivered by advance nurse practitioners is contingent on measuring patient experience. The self-management organisations/programme knowledge deficit among patients will be addressed by the IRNF in partnership with the patient organisation Arthritis Ireland. It is incumbent on advanced practice nurses to undertake service evaluations for quality improvement and further service development. Periodic use of PREMS is a feasible way to inform service evaluation for quality improvement. Disclosure U.E. Martin: None.

Intensive Neurophysiological Rehabilitation System for children with cerebral palsy: a quasi-randomized controlled trial

BackgroundRecent research indicates that intensive rehabilitation tends to be effective for children with cerebral palsy (CP). Intensive Neurophysiological Rehabilitation System (INRS) is a multi-component approach that combines various interventions and addresses different functional goals.. This study aimed to examine the effectiveness of the INRS treatment in children with bilateral CP.MethodsIn this quasi-randomized controlled study, 48 children with spastic bilateral CP (age 5–12 years, GMFCS Levels I-IV, MACS Levels I-IV) were assigned to an experimental or control group in order they have been enrolled. The experimental group underwent INRS treatment in the tertiary care facility for about four hours daily for ten days and continued routine home treatment for four weeks. After the first evaluation, participants from the control group stayed on the waiting list for four weeks receiving home treatment and then starting the INRS treatment. Thereby, all participants were assessed three times. The primary outcome measure was a Gross Motor Function Measure 66 Item Set (GMFM). The secondary outcome measures included the Jebsen-Taylor Hand Function test, Box and Blocks test, ABILHAND-Kids Questionnaire, Self-care and Mobility domain of the Pediatric Evaluation of Disability Inventory, and the ankle dorsiflexion passive range of motion.ResultsThere was a statistically significant increase in the GMFM score after the INRS treatment in both the experimental group (mean difference (MD) 2.0, P < 0.01) and control group (MD 1.5, P < 0.05), with a large size effect (partial eta squared (η2) = 0.21 and η2 = 0.14). The mean difference between groups during the first study period was 2.89 points (p < 0.01) in the GMFM score with a medium effect size (η2 = 0.12). Statistically significant superiority of the INRS treatment over home treatment was also obtained by Jebsen-Taylor Hand Function Test and the Box and Blocks Test in both dominant and non-dominant hands.ConclusionsThe study indicates that the INRS treatment can be beneficial for improving both gross motor functions and hand function in children with bilateral CP. Further longitudinal studies are required to evaluate the effects of the INRS treatment on the participation level of children with CP.Trial registrationThe study protocol was registered on ClinicalTrials.gov under the identifier: NCT04093180 on 17/09/2019.

Knowledge of arteriovenous fistula care in patients with end-stage kidney disease in south Asian countries: A systematic review and meta-analysis.

To find the prevalence of knowledge of arteriovenous fistula (AVF) self-care, its characteristics, and associated factors among hemodialysis patients and summarize the findings of various domains of AVF self-care in south Asian countries. The systematic literature search was performed on online databases and additional sources to retrieve published articles on AVF self-care. We estimated the pooled prevalence using a random effects model in meta-analysis. Additionally, thematic knowledge regarding various aspects of AVF self-care was narratively summarized. Among the articles retrieved seven studies met our inclusion and exclusion criteria. The prevalence of AVF self-care in individual studies ranged from 59% to 99%, with an overall random pooled prevalence of 81% (95% CI, 68% to 94%). Major factors associated with self-care of AVF knowledge included patients' educational status, age, vintage of hemodialysis, and healthcare personnel's advice. Knowledge scarcity regarding potential measures of AVF self-care obligates the need for continuous education in hemodialysis patients. A multidisciplinary approach is vital to enhance self-care from pre- to post-creation of AVF in hemodialysis patients as well as their caregivers in order to prolong the patency rates and decrease the subsequent morbidity and mortality due to failure of AVF.

Association of activities of daily living and cognitive function with thickness of the upper extremity muscles in children and adults with cerebral palsy

We examined the association of activities of daily living (ADL) and cognitive function with the upper extremity muscle thickness and upper extremity range of motion (ROM) and spasticity in children and adults with cerebral palsy (CP). The subjects were 20 children and adults with CP. The ADL performed using the upper extremities and cognitive function were assessed using the self-care domain of the Pediatric Evaluation of Disability Inventory (PEDI) and the full-scale intelligence quotient (FSIQ) of the Wechsler Intelligence Scale for Children, fourth edition (WISC-IV), respectively. The WISC-IV was assessed in only seven of 20 subjects able to undergo evaluation. The thickness of the upper extremity muscles was measured using an ultrasound imaging device. Moreover, ROM and spasticity of the upper extremities were assessed using the Modified Ashworth Scale (MAS). Manual manipulation ability was also assessed using the Manual Ability Classification System (MACS). Stepwise regression analysis revealed that the extensor digitorum muscle thickness and MACS level were significant and independent factors of self-care in the PEDI. Partial correlation analysis with MACS level and age as control variables showed that the FSIQ of the WISC-IV was significantly associated with the thickness of the anterior fibers of the deltoid and flexor digitorum superficialis muscles. Reduced ADL performed using the upper extremities is associated with decreased extensor digitorum muscle thickness rather than ROM and spasticity of the upper extremities in children and adults with CP.