'The doctor doesn't understand Xhosa and the service user doesn't understand English' - exploring the role of security guards acting as informal interpreters in psychiatric care in South Africa. [PDF]
Hanft-Robert S +6 more
europepmc +1 more source
Perception of mental health services during the COVID-19 pandemic – a German service user survey
Ni E +14 more
europepmc +1 more source
Clinically Relevant Outcome Measures in Women With Adrenoleukodystrophy
ABSTRACT Adrenoleukodystrophy is a rare inherited peroxisomal disease caused by pathogenic variants in the ABCD1 gene located on the X chromosome. Although the most severe central nervous system and adrenal complications typically affect only men with adrenoleukodystrophy, the majority of women develop myeloneuropathy symptoms in adulthood.
Chenwei Yan +3 more
wiley +1 more source
Mental health service user organizations in times of crises: adaptions, challenges and opportunities experienced by local associations during COVID-19. [PDF]
Grim K, Markström U.
europepmc +1 more source
Remote Assessment of Ataxia Severity in SCA3 Across Multiple Centers and Time Points
ABSTRACT Objective Spinocerebellar ataxia type 3 (SCA3) is a genetically defined ataxia. The Scale for Assessment and Rating of Ataxia (SARA) is a clinician‐reported outcome that measures ataxia severity at a single time point. In its standard application, SARA fails to capture short‐term fluctuations, limiting its sensitivity in trials.
Marcus Grobe‐Einsler +20 more
wiley +1 more source
Use of patient-centred outcome measures alongside the personal wheelchair budget process in NHS England: A mixed methods approach to exploring the staff and service user experience of using the WATCh and WATCh-Ad. [PDF]
Tuersley L +4 more
europepmc +1 more source
Value of MRI Outcomes for Preventive and Early‐Stage Trials in Spinocerebellar Ataxias 1 and 3
ABSTRACT Objective To examine the value of MRI outcomes as endpoints for preventive and early‐stage trials of two polyglutamine spinocerebellar ataxias (SCAs). Methods A cohort of 100 participants (23 SCA1, 63 SCA3, median Scale for the Assessment and Rating of Ataxia (SARA) score = 5, 42% preataxic, and 14 gene‐negative controls) was scanned at 3T up ...
Thiago J. R. Rezende +26 more
wiley +1 more source
Care coordinator delivered Method of Levels therapy for people reporting first-episode psychosis: Experiences and views of service user, care coordinator, and team manager participants of the CAMEO trial. [PDF]
Griffiths R +8 more
europepmc +1 more source
ABSTRACT Background Accessing brain magnetic resonance imaging (MRI) can be challenging, especially for underserved patients, which may lead to disparities in neurological diagnosis. Method This mixed‐methods study enrolled adults with one of four neurological disorders: mild cognitive impairment or dementia of the Alzheimer type, multiple sclerosis ...
Maya L. Mastick +19 more
wiley +1 more source

