BACKGROUND: Monocarboxylate transporter 8 (MCT8) deficiency is a rare neurodevelopmental and metabolic disorder, with daily care posing a heavy burden on caregivers. A comprehensive overview of these complex needs and daily care challenges is lacking.
METHODS: We established an international prospective registry to systemically capture data from parents and physicians caring for patients with MCT8 deficiency. Parent-reported data on complex needs and daily care challenges were extracted.
RESULTS: Between July 17, 2018, and May 16, 2022, 51 patients were registered. Difficulties in daily life care were mostly related to feeding and nutritional status (17/33 patients), limited motor skills (12/33 patients), and sleeping (11/33 patients). Dietary advice was provided for 11/36 patients. Two of 32 patients were under care of a cardiologist. Common difficulties in the diagnostic trajectory included late diagnosis (20/35 patients) and visiting a multitude of specialists (15/35 patients). Median diagnostic delay was significantly shorter in patients born in or after 2017 vs before 2017 (8 vs 19 months, P < .0001).
CONCLUSIONS: Feeding and sleeping problems and limited motor skills mostly contribute to difficulties in daily care. The majority of patients did not receive professional dietary advice, although being underweight is a key disease feature, strongly linked with poor survival. Despite sudden death being a prominent cause of death, potentially related to the cardiovascular abnormalities frequently observed, patients were hardly seen by cardiologists. These findings can directly improve patient-centered multidisciplinary care and define patient-centered outcome measures for intervention studies in patients with MCT8 deficiency.

To assess the effect of aerobic exercise (AZ) on global cognition and different cognition domains in patients with schizophrenia (SZ) in daily care. Selection of the literature was done through the Pubmed, Web of Science, Embase and Cochrane Library databases. Standardized mean difference (SMD) and 95% confidence intervals (CIs) were used to assess the effect of AZ on cognition of SZ patients. All assessment indicators were subjected to sensitivity analysis to test the stability of the result. Subgroup analysis was conducted on study type, follow-up time, supervisor and control method. Totally, 23 articles enrolling 1014 participants were included. The global cognition of SZ patients was improved after 6 months of follow-up. AE guided by an occupational therapist improved the global cognition of SZ patients. AE was associated with improved verbal learning and memory, reasoning and problem solving (SMD: 0.375, 95%CI: 0.009 to 0.741, P = 0.045). However, effects on speed of processing, attention/vigilance, work memory, visual learning and memory, social cognition were not significant. The effect of AE training on global cognition may be maintained over the long-term, and be domain specific. Patients with SZ can do AE guided by professional occupational therapist in their daily lives settings.

OBJECTIVE: To review the literature on how older people perceive opportunities and limitations with regard to participation in autonomous decisions concerning their daily care in their own homes.
BACKGROUND: The perception of personal control plays a critical role in an older person\'s health and well-being. Little is known about factors that facilitate or hinder older people\'s autonomous decision-making in their own homes.
METHODS: The study has been carried out as a literature review. The following databases were used: CINAHL, PubMed, PsykInfo, Cochrane, SweMed, Embase. Research studies range from 2009 to 2014.
RESULTS: The review includes 12 publications. Four core themes are generated: older person\'s autonomy in their own home; autonomy and relationship; the balance between autonomy and dependency; older people\'s autonomy and the organisation of home care.
CONCLUSIONS: Older people have a strong inner drive to maintain autonomy in their own home. The autonomy is challenged when the person becomes increasingly dependent on help. The relationship with carers is of vital importance with regard to the person\'s ability to make autonomous decisions. The organisation of home care restricts older people\' scope for autonomy.
CONCLUSIONS: Older people\'s own perspectives on autonomous decisions can contribute to the ongoing debate about how nursing care can be developed with respect to their autonomy. Nursing care demands attention to an older person\'s desire for autonomy despite dependency. A framework for systematic ethical discussions among carers may improve awareness about factors that facilitate or hinder good personalised care. The organisation of nursing care needs to be shaped in line with best practice for older people.