Satisfaction with health care services in young people with cerebral palsy in the transition period: results from a European multicenter study.

Background: Young people with chronic health conditions and disabilities rely on the healthcare system to maintain their best possible health. The appropriate delivery and utilization of healthcare services are key to improve their autonomy, self-efficacy and employment outcomes. The research question of our study is directed toward investigating if poor availability and accessibility of healthcare services in general, as identified by unmet needs in healthcare, are associated with dissatisfaction with healthcare. Methods: Within a European multicenter observational study, 357 young adults with cerebral palsy aged 19-28 were included. We assessed special healthcare needs, utilization of healthcare services, and satisfaction with healthcare applying the short-form of the YHC-SUN-SF, environmental and social variables (EAEQ) as well as indicators for severity of condition and functionality (e.g., GMFCS) of these participants based on a self-, assisted self- or proxy-reports. We used correlation analyses to explore associations between satisfaction with healthcare and respective indicators related to availability and accessibility of healthcare services as well as severity of the condition. In addition, we included reference values for satisfaction with heath care from young adults with various chronic conditions assessed within population-based surveys from some of the European countries included in the study. Results: We identified several unmet healthcare needs, especially for widely used and established services (e.g., physical therapy). Satisfaction with healthcare (YHC-SUN-SF general and subscale scores) was moderate to high and almost consistently better for the sample of young adults with cerebral palsy as compared to reference values for young adults with various chronic conditions assessed within general population surveys). Correlation coefficients between satisfaction with healthcare and utilization of services and (unmet) healthcare needs were low, also with different indicators for severity of the condition or functionality. Conclusion: Young adults with cerebral palsy reports of unmet healthcare needs varied largely but showed substantial deficits in some aspects. This seems to have no impact on the satisfaction with healthcare those patients currently receive. We conclude that these are two different constructs and somewhat independent indicators to evaluate the quality of healthcare. Clinicians and other practitioners should consider this distinction when monitoring patient needs in their daily practice.

Assessing the Adequacy of the Physical, Social, and Attitudinal Environment to the Specific Needs of Young Adults With Cerebral Palsy: The European Adult Environment Questionnaire.

OBJECTIVES: To present the development of the European Adult Environment Questionnaire (EAEQ), to assess to what extent it covers the International Classification of Functioning, Disability and Health (ICF), and to describe the adequacy of the physical, social, and attitudinal environment to the specific needs of young adults with cerebral palsy (CP). DESIGN: Cross-sectional. SETTING: Administrative regions in France, Germany, Italy, Portugal, and Sweden. PARTICIPANTS: Young adults with CP (N=357), with varying severity profiles, aged 19-28 years at time of interview (2018-20). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE(S): Physical, social, and attitudinal environment unmet needs. RESULTS: Relevant environmental factors (EFs) for young adults with CP were identified during focus groups in England and Portugal. EFs were mapped to the ICF environmental classification and the EAEQ analytical structure resulted from this linking procedure. It comprised 61 items, linked to 31 ICF environmental classification categories, and covered 4 of its 5 chapters. Content validity assessed with the bandwidth index (percentage coverage of ICF Core Sets for adults with CP) was satisfactory (79.3%). A descriptive analysis was carried out. Participants had a mean age of 24 years, 56% were men, 38% had severely limited mobility. Less than 16% reported unmet needs for EFs relating to home, college/work/day placement, and communication in the Products and technology chapter. Unmet needs were higher (>20%) for the other items in the Public use and Land development categories. Social support, attitudes, and understanding of relatives were often adequate to the participants' needs. The proportion of unmet needs varied by sex (women were more often concerned) and raised with increasing gross motor impairment. CONCLUSION: The EAEQ describes in detail the adequacy of the environment to the specific needs of young adults with CP. Its ICF-based structure opens up possibilities for use in a universal conceptual framework.

Communication and swallowing training of stroke-specialized health professionals using transdisciplinary knowledge in a patient-actor scenario: A case report.

BACKGROUND: Most people with stroke exhibit a variety of impairments that need to be addressed by a multidisciplinary team. Communication and swallowing disorders are common and should be screened very early. To guarantee a patient-centred approach, all patients, even those with speech and language disorders, must be actively engaged in the healthcare process. Effective communication is essential to success in many of the needed interventions. However, healthcare professionals often do not receive formal training in communicating with these patients, thus increasing the risk of preventable adverse events. AIMS: To describe the design, implementation and evaluation of a post-acute stroke multidisciplinary team training using patient actors in a simulation approach. METHODS & PROCEDURES: A 2-day course focused on the transdisciplinary knowledge related to communication and swallowing that all members of the multidisciplinary stroke team should acquire was implemented. A case-based learning methodology used simulation and resorting to patients' actors. Learning outcomes were evaluated by comparing the results obtained in two knowledge tests, one for each topic, which participants performed before and after each day course. Reaction to the training was gathered concerning the content, teacher quality and course organization. The follow-up was performed 6 months later to assess training skills transfer to the workplace environment. OUTCOMES & RESULTS: All the participants considered that the programme objectives were relevant or truly relevant and revealed that the programme's dynamic, rhythm and scenarios set were excellent. After the end of the programme, both communication and swallowing knowledge increased. Most participants had the opportunity to employ the acquired training skills in their work environment. The main barriers identified to implementing these skills were the 'need for additional training', the 'lack of time' or 'the lack of opportunities'. CONCLUSIONS & IMPLICATIONS: Simulation is a central method to increase and improve health professionals' skills when intervening with stroke patients. Using simulation with patient actors allows flexibility and diversification of clinical situations under analysis, which can provide a multiplier effect of reflection and learning. The implemented training achieved its objectives. WHAT THIS PAPER ADDS: What is already known on this subject Simulation in the training of health professionals is increasingly used as a good practice, allowing the recreation of scenarios identical to those in the context of professional practice. This strategy is used not only in initial training but also for the development of advanced skills. What this study adds to the existing knowledge This study reports the use of simulation using actor patients for the development of transdisciplinary skills in the topics of communication and swallowing in people with stroke What are the clinical and practical implications of this work? The study demonstrates that in a short period of training, the use of simulation with actor patients favours the development of transdisciplinary skills in the topics of communication and swallowing in people with stroke. At the same time, the skills developed are transferable to professional practice.

Determinants of participation and quality of life of young adults with cerebral palsy: longitudinal approach and comparison with the general population - SPARCLE 3 study protocol.

BACKGROUND: Effective inclusion in society for young people with disabilities is increasingly seen as generating opportunities for self-development, and improving well-being. However, significant barriers remain in the vast majority of activities meaningful for young adults. Research argues that various personal (disabilities, health) and environmental (access to the resources needed, accessible environment, discrimination, lack of personal economic independence) factors contribute to limited participation. However, previous studies conducted in young people with cerebral palsy (CP) mainly investigated the transition period to adulthood, and did not fully consider the whole range of impairment severity profiles or environmental barriers. In this study, we will use the follow-up of the SPARCLE cohort and a comparison group from the general population (1) to investigate the impact of the environment on participation and quality of life of young adults with CP, (2) to determine predictors of a successful young adulthood in educational, professional, health and social fields, (3) to compare quality of life and frequency of participation in social, work and recreational activities with the general population, (4) to document on participation and quality of life in those with severe disabilities. METHODS: The SPARCLE3 study has a combined longitudinal and cross-sectional design. Young adults with CP aged 22 to 27 years in 6 European regions previously enrolled in the SPARCLE cohort or newly recruited will be invited to self-complete a comprehensive set of questionnaires exploring participation (daily life and discretionary activities), health-related quality of life, body function, personal factors (health, personal resources), and contextual factors (availability of needed environmental items, family environment, services provision) during home visits supervised by trained researchers. Proxy-reports or adapted questionnaires will be used for those with the most severe impairments. The recruitment of a large group from the general population (online survey) will enable to identify life areas where the discrepancies between young people with CP and their able-bodied peers are the most significant. DISCUSSION: This study will help identify to what extent disabilities and barriers in environment negatively affect participation and quality of life, and how previous valued experiences during childhood or adolescence might modulate these effects.

Healthcare professionals and volunteers education in palliative care to promote the best practice-an integrative review.

BACKGROUND: Family caregivers' empowerment can assume strategic importance in palliative care. Healthcare professionals and volunteers have been showing significant gaps in this field. Hence, education has been advocated as an effective strategy to fill this gap. While several educational initiatives exist, a comprehensive evidence synthesis on the effectiveness of educational training on healthcare professionals and volunteers is lacking. AIMS: An integrative review was conducted to explore worldwide initiatives, aiming to improve healthcare professionals and volunteers' competence in a palliative care setting especially in relation to the family caregiver. METHOD: A scoping literature review was conducted with systematic searches in multiple databases - REDALYC, CINAHL, SCIELO, EBSCO, ERIC and MEDLINE since January 2012. Studies were selected based on programmes content and its impact evaluation. Four researchers assessed the studies regarding their eligibility with reference to the inclusion and exclusion criteria. FINDINGS: Twenty-two studies met the eligibility criteria. Multi-professional learning was reported, emphasising nurses and physician's enrolment. Only few studies showed participants' learning outcomes. Inconsistencies in delivery mode and duration were identified. Impact evaluations were heterogeneous and relied on no validated instruments. Family caregiver's content was addressed only in three initiatives. CONCLUSIONS: Further research is needed using a more reliable design, mode of delivery and impact measurement of educational training. In addition, more initiatives associated with cost-effectiveness, shorter- and longer-term clinical impact are needed. Despite the strides already made towards the establishment of an evidence base for healthcare professionals in the field of palliative care, either greater consideration is required for family care providers in the education of healthcare professionals and respect for the cultural diversity.

Inter-rater reliability, standard error of measurement and minimal detectable change of the 12-item WHODAS 2.0 and four performance tests in institutionalized ambulatory older adults.

PURPOSE: Self-reported and performance-based instruments are both necessary for a comprehensive view of the functioning of institutionalized older adults. Our aim was to assess the reliability and measurement error of the 12-item World Health Organization Disability assessment Schedule and compare these indexes against performance-based tests. MATERIALS AND METHODS: One hundred participants from Nursing Homes and Day Care Centers were assessed twice (two days to one week apart) by two independent assessors. Reliability and measurement error indexes were calculated. RESULTS: Reliability of the World Health Organization Disability assessment Schedule total score, and of three performance tests was appropriate for individual comparisons (ICC ≥ 0.92). Reliability for the five times seat to stand test was appropriate for group comparisons only (ICC = 0.84). The high measurement error of the timed up and go test (SEM = 4.25; MDC = 11.78) and of the five times seat to stand test (SEM = 3.47; MDC = 9.62) and the number of participants unable to perform them (TUG: n = 11; FTSST: n = 41) suggest that these tests are less suitable to monitor individual changes. CONCLUSIONS: The 12-item World Health Organization Disability Assessment Schedule total score, the gait speed and hand grip tests could be used to monitor changes at both the individual and group level in a population with decreased functioning. Implications for Rehabilitation The 12-item World Health Organization Disability assessment Schedule, could be used to monitor changes in perceived functioning both at the individual and group level in institutionalized ambulatory older adults. The gait speed and hand grip tests could be used to monitor changes in performance both at the individual and group level in institutionalized ambulatory older adults' functioning. The utility of the time up and go and of the five times seat to stand test might be of limited value when aiming to monitor changes in institutionalized older adults' functioning.

Remote Care Technology: A Systematic Overview.

The present study was based on a systematic review of reviews and meta-analyses and aimed to identify technologies being used to provide home monitoring to support older adults with chronic diseases and to promote their empowerment, as well as to identify how these technologies impact health related outcomes.

Validation of European Portuguese Version of the Kwazo Instrument.

Kwazo instrument was designed to assess the customer's satisfaction with prescription and attribution services of assistive technology. This paper presents the cross-cultural translation and validation of the European Portuguese version of the Kwazo, whose psychometric proprieties were assessed by customers of rehabilitation facilities of North and Centre of Portugal.

Goal setting for cerebral palsy children in context therapy: improve reliability when linking to ICF.

The linking process of information to ICF is a common task in different strategies used in rehabilitation practise but is a time consuming process mainly due to reliability issues. This work aims to developed additional rules to those already published in order to improve reliability of the linking process to ICF. The results are encouraging and this work could help to develop information technologies tools for facilitate this process.

Adaptation and validation of WHODAS 2.0 in patients with musculoskeletal pain.

OBJECTIVE: To validate the Portuguese version of the World Health Organization Disability Assessment Schedule (WHODAS 2.0). METHODS: The original, 36 item version of the WHODAS 2.0, administered through an interview, was translated into Portuguese following international guidelines and tested on 9 participants from the general population. The Portuguese version was then administered to 204 patients with musculoskeletal pain. The patients' socio-demographic and health data were collected, as were the number of sites where they were experiencing pain and the intensity of that pain. The WHODAS 2.0 was administered again by a second interviewer within three days to determine its inter-rater reliability. Construct validity was assessed according to the ability of WHODAS 2.0 to discriminate between patients with different numbers of pain sites and the correlation between WHODAS 2.0 scores and pain intensity. Internal consistency was also assessed. RESULTS: The Portuguese version of the WHODAS 2.0 is easily understood and has good internal consistency (α = 0.84), as well as, very good inter-rater reliability (ICC = 0.95). In addition, it was able to detect statistically significant differences between patients with different numbers of pain sites (p < 0.01) and showed that higher levels of disability are associated with more intense pain (r = 0.44, p < 0.01), indicating that it has construct validity. CONCLUSIONS: The Portuguese version of the WHODAS 2.0 has shown to be reliable and valid when administered to patients with musculoskeletal pain.

Pain intensity is associated with self-reported disability for several domains of life in a sample of patients with musculoskeletal pain aged 50 or more.

BACKGROUND: Most studies that investigate the impact of pain on function have focused on a particular pain site and use unidimensional measures of disability, making it difficult to know how pain impacts on different areas of functioning and whether different pain characteristics impact differently on function. AIM: To investigate the relationship between pain characteristics and self-reported disability in patients with musculoskeletal pain aged ≥50 years. METHODS: Two hundred and four consecutive patients with musculoskeletal pain aged ≥50 years had their pain assessed (frequency, global pain intensity, pain intensity for the most painful site, location and number of pain sites) and were asked to fill in the World Health Organization Disability Assessment Schedule (WHODAS 2.0) that assesses disability in 6 domains of daily life. RESULTS: Most patients reported chronic (77.5%), multisite or widespread (55.4%) pain that was always present (90.2%) and of moderate to severe intensity (mean score for global pain intensity = 5.91; SD = 2.02). Mean WHODAS 2.0 total score was 28.06 and SD was 19.86, corresponding to moderate disability. When entering age, sex, level of education, depression, number of comorbid chronic conditions and pain characteristics in a stepwise regression analysis, global pain intensity was the most important predictor for the domains of getting around (adjusted R(2) = 0.21, p < 0.001), self-care (adjusted R(2) = 0.14, p < 0.001), household activities (adjusted R(2) = 0.20, p < 0.001) and work (adjusted R(2) = 0.34, p < 0.001) and total score (adjusted R(2) = 0.19, p < 0.001). CONCLUSIONS: Pain intensity seems to be an important predictor of disability for several domains of life, suggesting that pain-related disability should be assessed for these domains.

Adaptacao e validacao do WHODAS 2.0 em utentes com dor musculoesqueletica / Adaptacion y validacion del WHODAS 2.0 en usuarios con dolor musculoesqueletico / Adaptation and validation of WHODAS 2.0 in patients with musculoskeletal pain

OBJETIVO Validar a versão em português do World Health Organization Disability Assessment Schedule (WHODAS 2.0). MÉTODOS A versão original de 36 itens do WHODAS 2.0, administrada por entrevista, foi traduzida para o português de acordo com orientações internacionais e testada em nove participantes da população em geral. A versão em português foi administrada em 204 pacientes com patologia musculoesquelética. Foram coletados os dados sociodemográficos e de saúde dos pacientes, assim como o número de locais onde apresentavam dor e sua intensidade. O WHODAS 2.0 foi novamente administrado por um segundo entrevistador, um a três dias após a primeira entrevista, para avaliar a confiabilidade interavaliadores. A validade de constructo foi avaliada quanto a: capacidade do WHODAS 2.0 para diferenciar participantes com diferentes locais com dor e associação entre o WHODAS 2.0 e a intensidade da dor. A consistência interna também foi avaliada. RESULTADOS A versão portuguesa do WHODAS 2.0 teve fácil compreensão, apresentou boa consistência interna (α = 0,84) e confiabilidade interavaliadores (CCI = 0,95). Mostrou ser capaz de detectar diferenças estatisticamente significativas entre indivíduos com diferente número de locais com dor (p < 0,01) e indicar que maior incapacidade está associada à maior intensidade da dor (r = 0,44, p < 0,01), indicando validade de constructo. CONCLUSÕES A versão portuguesa do WHODAS 2.0 mostrou-se confiável e válida quando utilizada em pacientes com dor associada à patologia musculoesquelética. .

OBJETIVO Validar la versión en portugués del World Health Organisation Disability Assessment Schedule (WHODAS 2.0). MÉTODOS La versión original con 36 ítems del WHODAS 2.0, administrada por entrevista, fue traducida al portugués de acuerdo con orientaciones internacionales, y evaluada en nueve participantes de la población en general. La versión en portugués fue aplicada en 204 pacientes con patología musculoesquelética. Se colectaron los datos sociodemográficos y de salud de los pacientes, así como el número de lugares donde presentaban dolor y su intensidad. El WHODAS 2.0 fue nuevamente aplicado por un segundo entrevistador, uno a tres días posteriores a la primera entrevista para evaluar la confiabilidad inter-evaluadores. La validez del constructo fue evaluado con relación a: capacidad del WHODAS 2.0 para diferenciar participantes con diferentes lugares con dolor y asociación entre el WHODAS 2.0 y la intensidad del dolor. La consistencia interna también fue evaluada. RESULTADOS La versión en portugués del WHODAS 2.0 fue de fácil comprensión, presentó buena consistencia interna (α= 0,84) y confiabilidad inter evaluadores (CCI=0,95). Mostró ser capaz de detectar diferencias estadísticamente significativas entre individuos con diferente número de lugares con dolor (p˂0,01) e indicar que mayor incapacidad está asociada con la mayor intensidad del dolor (r=0,44, p˂0,01), indicando validez del constructo. CONCLUSIONES la versión en portugués del WHODAS 2.0 se mostró confiable y valida al ser utilizada en pacientes con dolor asociado a la patología musculo esquelética. .

OBJECTIVE To validate the Portuguese version of the World Health Organization Disability Assessment Schedule (WHODAS 2.0). METHODS The original, 36 item version of the WHODAS 2.0, administered through an interview, was translated into Portuguese following international guidelines and tested on 9 participants from the general population. The Portuguese version was then administered to 204 patients with musculoskeletal pain. The patients’ socio-demographic and health data were collected, as were the number of sites where they were experiencing pain and the intensity of that pain. The WHODAS 2.0 was administered again by a second interviewer within three days to determine its inter-rater reliability. Construct validity was assessed according to the ability of WHODAS 2.0 to discriminate between patients with different numbers of pain sites and the correlation between WHODAS 2.0 scores and pain intensity. Internal consistency was also assessed. RESULTS The Portuguese version of the WHODAS 2.0 is easily understood and has good internal consistency (α = 0.84), as well as, very good inter-rater reliability (ICC = 0.95). In addition, it was able to detect statistically significant differences between patients with different numbers of pain sites (p < 0.01) and showed that higher levels of disability are associated with more intense pain (r = 0.44, p < 0.01), indicating that it has construct validity. CONCLUSIONS The Portuguese version of the WHODAS 2.0 has shown to be reliable and valid when administered to patients with musculoskeletal pain. .