[Occupational balance, disability and functionality in people with rheumatic disease]. / Equilibrio ocupacional, discapacidad y funcionalidad en personas con enfermedades reumáticaS

BACKGROUND: We aimed to assess the occupational balance of people with rheumatic disease, analyze its relationship with participation, performance, and satisfaction with daily life activities, and evaluate whether age or receiving non-pharmacological treatment affects the outcome. METHODS: Cross-sectional study carried out between March and November 2021; patients with non-advanced stage of rheumatic disease from the ConArtritis Association - selected through simple random sampling -, were included. Sociodemographic data and scores from the OBQ, IMPACT-S, COPM questionnaires, and a questionnaire created ad hoc for daily life activities were collected online and/or by telephone. RESULTS: The occupational balance of the 47 participants was low (OBQ: 34.2; SD: 13.7). Despite a high participation in daily life activities (IMPACT-S: 76.8; SD: 13.1), the degree of performance and satisfaction with these activities was far from optimal (COPM-R: 3.9; SD: 2.0 and COPM-S: 4.3; SD: 2.5); 46.8% of the participants found limitations in at least four daily life activities (basic and instrumental) and 61.7% used at least one support product in their daily lives. These limitations reduced their resting time and affected their jobs, hobbies, and personal relationships. The level of performance was negatively related to age (p=0.04); No changes in the scores were found in patients who received non-pharmacological treatment. CONCLUSIONS: Our results suggest that individuals with non- advanced stage of a rheumatic disease perceive that their occupational balance may be improved should they have fewer limitations in daily life activities.

Spanish Cultural Adaptation and Inter-Rater Reliability of the Revised Knox Preschool Play Scale.

BACKGROUND: The Revised Knox Preschool Play Scale (RKPPS) is a comprehensive assessment test that observes the level of play development; however, there is no culturally adapted version available with stable psychometric values that would allow its widespread use and provide objective information during clinical evaluations. METHODS: Cross-cultural adaptation included direct and retrospective translations, along with cognitive interviews with pediatric occupational therapists to analyze the comprehensibility of the translation. In addition, a final phase of linguistic revision was carried out to determine the grammatical and semantic fit of the adapted version. Finally, inter-rater reliability was analyzed in a sample of typically developing children aged four to six years old. RESULTS: The processes of translation and back-translation, cognitive interview, and linguistic review determined an adequate grammatical and semantic equivalence to the Spanish cultural context. Almost perfect agreement, with values between 0.82 and 0.94, was obtained for items and play dimensions, indicating that the precision of the measurements between both evaluators was excellent. CONCLUSIONS: The cross-culturally adapted version of the RKPPS meets the necessary adjustments for the sociocultural context and can be used in the clinical practice of occupational therapy.

Prospective One-Year Follow-Up of Sensory Processing in Phelan-McDermid Syndrome.

BACKGROUND: Phelan-McDermid syndrome (PMS) is caused by the loss (deletion) of a small portion of chromosome 22 in a region designated q13.3 (22q13.3 deletion). PMS is one of the most common genetic forms of autism spectrum disorder (ASD) in which sensory reactivity difficulties have been described on limited occasions. METHODS: The objective of this study is to identify whether changes in sensory reactivity skills occur after one year of follow-up in a group of 44 participants diagnosed with PMS. All participants completed the Short Sensory Profile (SSP). Two-factor ANOVA tests were performed with repeated measures for the study of the evolution of the scores. RESULTS: Participants with PMS showed significant changes after one year of follow-up in sensory reactivity skills associated with tactile hyperreactivity (p = 0.003). The rest of the study variables did not show significant differences compared to the baseline assessment, showing definite differences associated with patterns of hypo-responsiveness and sensory seeking, low/weak energy, and difficulties in auditory filtering. CONCLUSIONS: Understanding the evolution of sensory reactivity skills can facilitate the adjustment to behavioral changes in people with PMS and design-targeted interventions to address sensory reactivity challenges.

The Impact of Social Distancing Due to COVID-19 on Activities of Daily Living in Parkinson's Disease.

INTRODUCTION: To explore the impact of the lockdown and social distancing measures, applied for one year, due to the COVID-19 pandemic on Activities of Daily Living in patients with Parkinson's disease, as well as to determine the association between daily performance and tasks requiring more manipulative dexterity. METHODS: Data collection was carried out between 18 January and 22 March 2021 through telephone interviews. Patients were recruited from associations of patients with Parkinson's disease in Spain. A questionnaire was designed including items from standardized tools of the Activities of Daily Living Questionnaire to measure the level of independence and from the Dexterity Questionnaire for manipulative dexterity. RESULTS: There were 126 participants aged 36-89 years, 58% of whom were male. The results of our study reveal a significant decline in almost all the ADLs assessed. There is a moderate correlation between the degree of dependence in ADLs and the difficulty in performing activities requiring manipulative dexterity. CONCLUSIONS: Social isolation related to the COVID-19 pandemic and its consequences may have contributed to an increase in the deterioration of manipulative ability, leading to a loss of ability to perform ADLs. These results show specific needs to be considered in the rehabilitation treatment of these patients.

How Do Motor and Sensory Function Correlate with Daily Performance Recovery after Post-Stroke Robotic Intervention? A Secondary Analysis of a Non-Randomized Controlled Trial.

New technologies have been developed to complement conventional interventions to better target the specific needs of people with stroke, and they have been shown to improve both function and performance. However, it is unknown whether the baseline levels of sensorimotor function and performance interrelate with the improvement in upper limb and daily performance. Thus, the aim of this study was to examine the relationship between baseline levels of sensorimotor function and daily performance and its impact on post-intervention improvement in people with stroke following a robotic intervention. A single-blind, non-randomized, controlled clinical trial was conducted. Participants in the experimental group (n = 9) received a robotic intervention in addition to conventional treatment. Sensorimotor function was measured with Semmes-Weinstein Monofilaments® and the Fugl-Meyer Assessment Upper Extremity Scale. Upper limb and daily performance were measured with the MAL and SIS-16 scales. The multivariate regression models showed that baseline levels of upper limb performance and motor function predicted >95% of the variance in upper limb performance (p < 0.001), while pre-intervention levels of daily performance explained >75% of the post-intervention variance (p < 0.05). These findings indicate that basal upper limb motor function is associated with improved performance following a combined intervention of conventional treatment and robotic intervention.

Experiences surrounding the diagnostic process and care among parents of children diagnosed with Phelan-McDermid syndrome: A qualitative study.

AIM: To explore the experience of parents of children diagnosed with Phelan-McDermid syndrome (PMS) with regard to the diagnostic process, treatment, and medical care. METHOD: A qualitative descriptive study was conducted. Participants were recruited using non-probabilistic purposeful sampling. In total, 32 parents with children with PMS were included. In-depth interviews and researcher field notes were used. An inductive thematic analysis was performed. RESULTS: Five themes were identified: (1) the 'diagnostic process' describes the diagnostic process and how it is communicated to the parents; (2) 'treatment and expectations' describes the expectations and hopes placed on future treatment; (3) 'family planning' describes how parents deal with genetic counselling when planning to have more children after a diagnosis of PMS; (4) 'the world of disability' describes the entry of parents into an environment of dependency and disability after the diagnosis; (5) 'family's financial situation' highlights the financial difficulties due to the high cost of therapies and daily care products. INTERPRETATION: Our results provide insight on how a diagnosis of PMS and its consequences are experienced by parents of children with PMS. These results can be used by health professionals to help and support parents.

Descriptive Analysis of Adaptive Behavior in Phelan-McDermid Syndrome and Autism Spectrum Disorder.

Introduction: The variety in symptomatology and clinical presentation of individuals diagnosed with Phelan-McDermid Syndrome (PMS) can delay medical diagnosis, so identifying specific neurobehavioral variables and facilitating differential diagnosis with patients with idiopathic Autism Spectrum Disorder (ASD) can guide early detection. Methods: A descriptive analysis of the level of adaptive behavior in 50 patients diagnosed with PMS was performed (SHANK3 deletion: N = 44; SHANK mutation : N = 6). Subsequently, a comparative analysis was performed with 28 children aged between 4 years and 6 years and 11 months (SHANK3 deletion = 14; ASD = 14). Differences between the two groups were evaluated and Bonferroni correction was applied for multiple comparisons. Results: Differences were identified in the variables of communication (z = -2.715, p = 0.007), Self-Direction (z = -2.199, p = 0.028) and social participation (z = -3.190, p = 0.001), with better adaptive behavior skills being observed in participants with a SHANK3 mutation . Better adaptive skills in the sample of participants with ASD , were found and statistically significant differences were identified in the variables of academic skills (z = -3.084, p = 0.002), use of community resources (z = -1.889, p = 0.050) and health and safety (z = -2.90, p = 0.004). Conclusion: Participants with SHANK3 mutation show better communication and social participation skills than those with a diagnosis of SHANK3 deletion. The observed differences between ASD and individuals with PMS reflect deficits in practical and conceptual adaptive skills that may limit and hinder daily adaptive functioning.

Mental Practice and Manipulative Skills Training Among People With Multiple Sclerosis: A Pilot Study.

IMPORTANCE: Multiple sclerosis (MS) is a demyelinating disease of the central nervous system that produces both motor and cognitive dysfunctions. Impairments in limb function as a result of MS cause a decline in the performance of activities of daily living (ADLs). OBJECTIVE: To determine whether the use of mental practice (MP) or MP combined with training in motor manipulation skills (skills training) would improve gross and fine motor skills and treatment satisfaction among people with MS. DESIGN: Pilot study with a duration of 3 mo plus 3-mo follow-up. SETTING: Two MS associations. PARTICIPANTS: Thirty-five patients diagnosed with MS of the relapsing-remitting and progressive secondary subtypes, ages 25 to 60 yr. INTERVENTION: The participants were allocated to one of three groups according to their order of inclusion in the study: (1) MP, (2) MP + skills training, or (3) control group. The treatment protocol had a 6-wk duration and a total of 12 sessions. Outcomes and Measures: Blinded evaluators performed three assessments for each patient (pretreatment, posttreatment, and 3-mo follow-up) using the Nine-Hole Peg Test, Box and Block Test, ABILHAND, and Canadian Occupational Performance Measure (COPM). RESULTS: We found no evidence of benefits in self-perceived performance of ADLs with respect to gross and fine motor skills; however, there was an improvement in perceived satisfaction and in the performance of activities, independent of the treatment received. CONCLUSIONS AND RELEVANCE: Perceived ADL performance and satisfaction with performance increases among people with MS when they receive MP, MP + skills training, and conventional rehabilitation treatment. What This Article Adds: Mental practice combined with conventional treatment could contribute to patients perceiving improved performance of ADLs. Self-reported outcome measures, such as the COPM, could provide highly valuable information about occupation performance that may not match the objective evidence.

The Influence of Self-Perception on Manipulative Dexterity in Adults with Multiple Sclerosis.

BACKGROUND: Multiple sclerosis is a disorder which causes a loss of functionality, affecting the person's ability to perform activities of daily living, such as interpersonal interactions and relationship, dressing, self-care, or bathing, as well as having a negative impact on work and leisure activities. AIMS: This study examined the relationship (correlational or associations/predictive) between self-perceived quality of life and performance of manipulative dexterity. Also, this study sought to measure predictors of dexterity. Study Design. A cross-sectional study from two associations of MS within the Community of Madrid, Spain. Methods and Procedures. A final sample of 30 people with multiple sclerosis. The outcome measures used were the ABILHAND questionnaire, the Purdue Pegboard Test, the Nine Hole Peg Test, and the Box and Block Test. RESULTS: No significant correlations were found between dexterity and self-perception tests; however, correlations were found between perceived dexterity and quality of life (p < 0.001). Scores for the ABILHAND questionnaire, which measures the perception of skills in daily living, predicted up to 60% of the variance in the dexterity tests. CONCLUSIONS: The results of this study suggest that interventions for improving the manipulative dexterity of people with multiple sclerosis should address the person's perception of improving their manipulative dexterity and the perceived of quality of life, as both factors may influence manipulative dexterity.

The Impact of Anxiety and Upper Limb Disability on Participation Levels in People With Dystonia: An Observational Cross-Sectional Case-Control Study.

OBJECTIVE: This study sought to evaluate the level of anxiety in people with dystonia and to examine a possible relationship between the level of participation, anxiety, and functional limitations. DESIGN: This is an observational, cross-sectional, case-control study with 12 cases of focal dystonia and 12 healthy controls aged between 18 and 75 yrs. The Hamilton Anxiety Rating Scale, the QuickDASH scale, and the Measure of Participation and Activities were used. Differences in scores and effect size were analyzed through the Student t test and Cohen d test. A multiple regression model was performed to determine the relationship between variables. RESULTS: People with dystonia obtained higher scores in the three subsections of the Hamilton Anxiety Rating Scale (total anxiety, psychiatric anxiety, and somatic anxiety; P < 0.05) and on the QuickDASH scale, together with lower scores in participation in activities of daily living of the Measure of Participation and Activities (P = 0.01). Greater upper limb disability was associated with a greater negative impact on participation in activities of daily living (P < 0.01); however, no significant relationship was found with anxiety (P > 0.05). CONCLUSIONS: This study suggests that the ability of people with dystonia to participate in society is negatively affected by the level of disability of the upper limb, but even when anxiety-age-related differences were controlled for, no relationship was found between variables.

Occupational performance in multiple sclerosis and its relationship with quality of life and fatigue.

BACKGROUND: Performance and perceived satisfaction of daily occupations in people with multiple sclerosis (MS) can affect the perception of their quality of life and be impacted by the level of fatigue. AIM: To describe the performance and occupational self-perception, as well as to analyze whether there is a relationship between the perception of occupational performance and the quality of life and perceived fatigue. DESIGN: A descriptive cross-sectional study. SETTING: Participants were referred by the services of Neurology of the various hospitals in Madrid. The assessment process was performed either at the MS' associations, in the participants' home, or at the Laboratory of Cognitive Intervention of the Health Sciences Faculty of the University. POPULATION: A total sample of 30 people with MS (pwMS) selected by non-probabilistic consecutive sampling during a three-months uptake patient recruitment period. METHODS: The outcome measures used were the Canadian Occupational Performance Measure (COPM), the Modified Fatigue Impact Scale (MFIS) and the Multiple Sclerosis Quality of Life 54 (MSQoL-54). Descriptive analysis, parametric and non-parametric tests and multiple linear regression models were used. RESULTS: A statistically significant positive correlation was found between occupational performance and physical and mental health. Also, high physical health scores were associated with high satisfaction scores. Multiple regression models indicated that high levels of satisfaction were associated with high levels of physical health (P= 0.013). CONCLUSIONS: The better the perception of the physical aspects that influence the quality of life, the better the perceived satisfaction of pwMS. Fatigue may not influence self-perceived satisfaction and performance. CLINICAL REHABILITATION IMPACT: The physical factors affecting perceived satisfaction should be considered when planning interventions to promote quality of life in pwMS. Although fatigue associated with MS may influence perceived performance and satisfaction, no relevant associations were found between variables.

Bilateral deficits in fine motor control ability and manual dexterity in women with fibromyalgia syndrome.

The aim of the current study was to investigate fine motor control ability and manual dexterity women with fibromyalgia syndrome (FMS) without symptoms in the upper extremity compared to healthy women. Subtests of the Purdue Pegboard Test (one-hand, bilateral and assembly) and of the Jebsen-Taylor hand-function test (writing, turning cards, picking up small, light and large heavy objects, simulated feeding and stacking checkers) were evaluated bilaterally in 20 women with FMS (aged 35-55 years) without symptoms in the upper limb and 20 age- and hand dominance-matched healthy women. Differences between sides and groups were analysed with several analysis of variance (ANOVA). The ANOVA revealed significant differences between groups (P < 0.001) and sides (P = 0.007) for one-hand pin placement subtest: women with FMS showed bilateral worse scores than controls. Patients also exhibited significantly lower scores in bilateral pin placement and assembly subtests when compared to healthy controls (P < 0.001). The ANOVA also revealed significant differences between groups for writing, turning over cards, picking up small objects, stacking checkers, picking up large light objects and picking up large heavy objects (all, P < 0.001): women with FMS needed more time for these subtests than healthy women with both hands. No difference for simulated feeding was found between groups. Our findings revealed bilateral deficits in fine motor control ability and manual dexterity in patients with FMS without symptoms in the upper extremity. These deficits are not related to the clinical features of the symptoms supporting an underlying central mechanism of altered motor control.