Further development in measuring communicative participation: identifying items to extend the applicability of the communicative participation item bank

Background: The ability to communicate is a prerequisite for participation in today’s society. To measure participation in adults with communication disorders, the Communicative Participation Item Bank (CPIB) was developed in 2006. Since then, several new PROMs have been developed to measure communication and the impact of communication disorders on participation. Moreover, the CPIB items do not all appear to be relevant to certain populations with communication problems and context of communicative participation is changing rapidly, given the increased use of digital communication forms. The purpose of this study was to identify new PROMs developed since 2006 that aim to measure (aspects of) communication, in order to select items that are suitable for expanding the Communicative Participation Item Bank to make the item bank more widely applicable (e.g., to the hearing-impaired population) and tailored to the current societal context. Methods: Medline and Embase were used to search for PROMs that aim to measure (aspects of) communication. Each new PROM as well as the CPIB, was evaluated to determine to what extent it contains items that measure communicative participation and to what extent these items capture all communicative participation domains by linking each item to the ICF Activities and Participation domains. Results: This study identified 31 new PROMs, containing 391 items that were labelled as measuring communicative participation. The majority of the 391 items measure aspects of ICF Activities and Participation domain ‘communication’, followed by the domain ‘interpersonal interactions and relationships’. The other ICF Activity and Participation domains were less often addressed. Analysis of the CPIB showed that items do not cover all domains of participation as defined in the ICF, such as the ‘major life areas’ domain. Conclusions: We found a potential pool of 391 items measuring communicative participation that could be considered for extending the CPIB. We found items in domains that are already present in the CPIB, but also items that relate to new domains, such as an item on talking with customers or clients for the ‘major life areas’ domain. Inclusion of new items in other domains would benefit the comprehensiveness of the item bank

Neurobiological basis and risk factors of persistent fatigue and concentration problems after COVID-19: study protocol for a prospective case–control study (VeCosCO)

Introduction: The risk factors for persistent fatigue and cognitive complaints after infection with SARS-CoV-2 and the underlying pathophysiology are largely unknown. Both clinical factors and cognitive-behavioural factors have been suggested to play a role in the perpetuation of complaints. A neurobiological aetiology, such as neuroinflammation, could be the underlying pathophysiological mechanism for persisting complaints. To unravel factors associated with persisting complaints, VeCosCO will compare individuals with and without persistent fatigue and cognitive complaints >3 months after infection with SARS-CoV-2. The study consists of two work packages. The first work package aims to (1) investigate the relation between persisting complaints and neuropsychological functioning; (2) determine risk factors and at-risk phenotypes for the development of persistent fatigue and cognitive complaints, including the presence of postexertional malaise and (3) describe consequences of persistent complaints on quality of life, healthcare consumption and physical functioning. The second work package aims to (1) determine the presence of neuroinflammation with [18F]DPA-714 whole-body positron emission tomography (PET) scans in patients with persisting complaints and (2) explore the relationship between (neuro)inflammation and brain structure and functioning measured with MRI. / Methods and analysis: This is a prospective case–control study in participants with and without persistent fatigue and cognitive complaints, >3 months after laboratory-confirmed SARS-CoV-2 infection. Participants will be mainly included from existing COVID-19 cohorts in the Netherlands covering the full spectrum of COVID-19 acute disease severity. Primary outcomes are neuropsychological functioning, postexertional malaise, neuroinflammation measured using [18F]DPA-714 PET, and brain functioning and structure using (f)MRI. / Ethics and dissemination: Work package 1 (NL79575.018.21) and 2 (NL77033.029.21) were approved by the medical ethical review board of the Amsterdam University Medical Centers (The Netherlands). Informed consent is required prior to participation in the study. Results of this study will be submitted for publication in peer-reviewed journals and shared with the key population

Poststroke hand swelling and oedema:prevalence and relationship with impairment and disability

Objective: To examine the prevalence of swelling and oedema of the hand in stroke patients and relationships with impairments and disability. Design: Cross-sectional. Setting: Stroke unit at Rehabilitation Centre De Hoogstraat, the Netherlands. Subjects: Eighty-eight adult stroke patients who were admitted for clinical rehabilitation during one year (2000). Measurements and methods: Assessment took place two weeks after admission to the rehabilitation centre. Degree of swelling was measured with a hand volumeter and oedema was defined as a volumeter score deviating more than two standard deviations from the expected score derived from population data. Further assessment included tonus (Modified Ashworth Score), sensibility, tactile inattention, carefulness, and motor function (Utrecht Arm/Hand Test). Arm disability was measured with Frenchay Arm Test and Nine-hole Peg Test. Results: Some degree of hand swelling was present in 72.7% and oedema in 33.0% of our patients. Swelling and oedema were significantly more often seen in patients with hypertonic fingers and impaired sensibility. Patients with hand oedema had significantly worse Frenchay Arm Test and Nine-hole Peg Test scores. Conclusions: Swelling and oedema of the hand are common among stroke patients in clinical rehabilitation

Measures used to assess burden among caregivers of stroke patients: a review

Objective: To describe measures used to evaluate the burden of caregiving experienced by caregivers of stroke patients and their clinimetric properties. Design: A review of the literature was conducted to examine burden scales with regard to concept, feasibility, internal consistency, validity, reliability and responsiveness. Results: The literature search resulted in 45 measures of caregiver outcomes, including 16 different measures of caregiver burden. About half of the scales were used only once and were not further described. Nearly all instruments measure the various dimensions of burden (competency, negative feelings, social relations, participation problems, physical and mental health and economic aspects), but not in the same proportions. Most measures showed good internal consistency, and validity was demonstrated for all measures except one. However, not much is known about the reliability and responsiveness of these measures. Conclusions: No measure has proven superiority above others. Future research should focus on comparisons between existing instruments and on their reliability and responsiveness

Course of Social Participation in the First 2 Years After Stroke and Its Associations With Demographic and Stroke-Related Factors

BACKGROUND: Many persons with stroke experience physical, cognitive, and emotional problems that contribute to restrictions in social participation. There is, however, a lack of knowledge on the long-term course of participation over time post-stroke. OBJECTIVE: To describe the time course of participation up to 2 years post-stroke and to identify which demographic and stroke-related factors are associated with this time course. METHODS: This was a multicenter, prospective cohort study following 390 persons with stroke from hospital admission up to 2 years (at 2, 6, 12, and 24 months). Multilevel modeling with linear and quadratic time effects was used to examine the course of the frequency of vocational and social/leisure activities, experienced restrictions, and satisfaction with participation. RESULTS: The frequency of vocational activities increased up to 1 year post-stroke and leveled off thereafter. Older and lower-educated persons showed less favorable courses of participation than younger and higher-educated persons, respectively. The frequency of social/leisure activities decreased post-stroke. Participation restrictions declined up to 1 year post-stroke and leveled off thereafter. Persons dependent in activities of daily living (ADL) kept experiencing more restrictions throughout time than independent persons. Satisfaction with participation increased slightly over time. CONCLUSIONS: Changes in participation occurred mostly in the first year post-stroke. Particularly older and lower-educated persons, and those dependent in ADL showed less favorable courses of participation up to 2 years post-stroke. Clinicians can apply these findings in identifying persons most at risk of long-term unfavorable participation outcome and, thus, target rehabilitation programs accordingly