Implementation of a real-world based ICF set for the rehabilitation of respiratory diseases: a pilot study.

BACKGROUND: International Classification Functioning (ICF) Core Sets represent a holistic approach to functioning within rehabilitation field. Information-reporting efficacy of a rehabilitation-based Respiratory ICF set applied on a large scale throughout the ICS Maugeri network was tested. METHODS: A prospective multi-center study (May-November 2018) was conducted for all respiratory inpatients consecutively admitted for rehabilitation. Doctors, physiotherapists, psychologists, nurses used an electronic Respiratory ICF set (33 items among the ICF body functions, activity and participations components) at admission and at discharge to assess the disability changes. The ICF report qualifiers, from 0 (no impairment) to 4 (maximum impairment), guided clinical, diagnostic and rehabilitation prescriptions. RESULTS: 1886 patients (69.6±10.8 years; M=1045) were admitted (589 chronic obstructive pulmonary disease, 494 chronic respiratory failure [CRF], 21 prolonged mechanical ventilation [PMV], 496 with other respiratory diseases), of whom 15 died, and 117 were transferred to acute care. The mean length of stay was 23.1±11.8 days (range 1-122). The mean time to fill in the ICF set was 23.16±0.70 min. The rate of filled charts improved from 16% in May to 100% in November. The baseline distribution of the more severe qualifiers (>2) progressively increased from the whole sample to the PMV subgroup. After rehabilitation, in the whole sample and in the CRF and PMV subgroups, the severity qualifiers significantly decreased (P<0.0001), showing a positive effect of the intervention on patients' disability. CONCLUSIONS: Routine use of a Respiratory ICF set for chronic respiratory diseases helps to prepare a personalized rehabilitation program discriminating disability level in different respiratory diseases and assessing disability outcomes pre-post rehabilitation.

[Towards a baseline ontology for information technology in rehabilitation medicine: the nomenclator of the rehabilitation procedures]. / Verso un'ontologia di riferimento per i sistemi informativi in medicina riabilitativa: il nomenclatore delle prestazioni riabilitative.

SUMMARY: One of the main aims of Healthcare Information Technology is the safe and efficient management of significant amounts of clinical data. Now more than ever, such goal requires the creation of common semantics to ontologically organize knowledge enclosed in databases. By means of the application of the WHO ICD-ICF frameworks, the ensemble of rehabilitative activities lead in all the Maugeri institutes in Italy, has been formally standardized to create a Nomenclator, with the aim to: a) support clinicians in the definition of the individualized Care Pathway; b) program, optimize and maximize patient's rehabilitation activities, according to clinical and organizational requirements; c) qualitatively and quantitatively report the daily health-care professionals' workflows; d) provide a structured and detailed medical record meeting appropriateness requirements. In this regard, the application of the ICD-ICF framework as a baseline ontology, paves the path to an ongoing tracking of the rehabilitation processes, leading to a more accurate description of patient's functioning profile. The upcoming challenge for rehabilitation is the ultimate overcoming of a solely epidemiological perspective, in order to embrace a holistic approach, fostered by ontologically-based information technologies.

Healthcare professionals' moral distress in adult palliative care: a systematic review.

OBJECTIVES: Palliative care providers may be exposed to numerous detrimental psychological and existential challenges. Ethical issues in the healthcare arena are subject to continual debate, being fuelled with ongoing medical, technological and legal advancements. This work aims to systematically review studies addressing the moral distress experienced by healthcare professionals who provide adult palliative care. METHODS: A literature search was performed on PubMed, Scopus, Web of Science and PsycINFO databases, searching for the terms 'moral distress' AND 'palliative care'. The review process has followed the international PRISMA statement guidelines. RESULTS: The initial search identified 248 papers and 10 of them were considered eligible. Four main areas were identified: (1) personal factors, (2) patients and caregivers, (3) colleagues and superiors and (4) environment and organisation. Managing emotions of self and others, witnessing sufferance and disability, caring for highly demanding patients and caregivers, as well as poor communication were identified as distressing. Moreover, the relationship with colleagues and superiors, and organisational constraints often led to actions which contravened personal values invoking moral distress. The authors also summarised some supportive and preventive recommendations including self-empowerment, communication improvement, management of emotions and specific educational programmes for palliative care providers. A holistic model of moral distress in adult palliative care (integrating emotional, cognitive, behavioural and organisational factors) was also proposed. CONCLUSIONS: Cognisance of risk and protective factors associated with the moral distress phenomenon may help reframe palliative healthcare systems, enabling effective and tailored actions that safeguard the well-being of providers, and consequently enhance patient care.

F4-neuroprostanes mediate neurological severity in Rett syndrome.

BACKGROUND: Rett syndrome (RTT) is a pervasive development disorder, mainly caused by mutations in the methyl-CpG binding protein 2 (MeCP2) gene. No reliable biochemical markers of the disease are available. Here we assess F4-neuroprostanes (F4-NeuroPs), lipid peroxidation products of the docosahexaenoic acid, as a novel disease marker in RTT and correlate it with clinical presentation, MeCP2 mutation type, and disease progression. In addition, we investigate on the impact of ω-3 polyunsaturated fatty acids (ω-3 PUFAs) supplementation on F4-NeuroPs levels. METHODS: A case-control study design was used. A cohort of RTT patients (n=144) exhibiting different clinical presentations, disease stages, and MeCP2 gene mutations were evaluated. F4-NeuroPs were measured in free form using a GC/NICI-MS/MS technique. Plasma F4-NeuroPs levels in patients were compared to healthy controls and related to RTT forms, disease progression, and response to ω-3 PUFAs supplementation. RESULTS: Plasma F4-NeuroPs levels were i) higher in RTT than in controls; ii) increased with the severity of neurological symptoms; iii) significantly elevated during the typical disease progression; iv) higher in MeCP2-nonsense as compared to missense mutation carriers; v) higher in typical RTT as compared to RTT variants; and vi) decreased in response to 12 months ω-3 PUFAs oral supplementation. CONCLUSIONS: Quantification of plasma F4-NeuroPs provides a novel RTT marker, related to neurological symptoms severity, mutation type and clinical presentation.