Background: 22q11 Deletion Syndrome (22q11DS) is the most common microdeletion syndrome with broad phenotypic variability, leading to significant morbidity and some mortality. The varied health problems associated with 22q11DS and the evolving phenotype (both medical and developmental/behavioural) across the lifespan can strongly impact the mental health of patients as well as their caregivers. Like caregivers of children with other chronic diseases, caregivers of children with 22q11DS may experience an increased risk of traumatisation and mental health symptoms.Objective: The study\'s primary objective was to assess the frequency of traumatic experiences and mental health symptoms among mothers of children with 22q11DS. The secondary objective was to compare their traumatic experiences to those of mothers of children with other neurodevelopmental disorders (NDDs).Method: A total of 71 mothers of children diagnosed with 22q11DS completed an online survey about their mental health symptoms and traumatic experiences. Descriptive statistics were used to summarise the prevalence of their mental health symptoms and traumatic experiences. Logistic regression models were run to compare the traumatic experiences of mothers of children with 22q11DS to those of 335 mothers of children with other neurodevelopmental disorders (NDDs).Results: Many mothers of children with 22q11DS experienced clinically significant mental health symptoms, including depression (39%), anxiety (25%), and post-traumatic stress disorder (PTSD) symptoms (30%). The types of traumatic events experienced by mothers of children with 22q11DS differed from those of mothers of children with other NDDs as they were more likely to observe their child undergoing a medical procedure, a life-threatening surgery, or have been with their child in the intensive care unit.Conclusion: 22q11DS caregivers are likely to require mental health support and trauma-informed care, tailored to the specific needs of this population as they experience different kinds of traumatic events compared to caregivers of children with other NDDS.
Mothers of children with 22q11DS experience clinically significant levels of depression, anxiety, and PTSD.Mothers of children with 22q11DS experience many and diverse trauma particularly related to medical interventions of their child.The types of traumatic events experienced by mothers of children with 22q11DS are different from those of the mothers of children with other neurodevelopmental disorders.

BACKGROUND: Given the growing increase in dementia, the need to control these patients, together with the rise of new technologies, makes a change in the current control system imperative.
METHODS: We have carried out a single-center, clinical study with two groups, a control group of 72 patients/caregivers, who followed the usual controls in consultations, and another telematic group of 76 patients/caregivers, who followed the controls through of the Tecuide platform. The platform had a survey part to detect problems in patients and caregiver claudication, another training part and another chat for direct communication when the caregiver needed it and also served to respond when a problem was detected.
RESULTS: After a year of monitoring with the platform we have obtained: a)in patients, reduce behavioral disorders and use of drugs, increase physical exercise and delay institutionalization (DS not found); b)in caregivers there is an improvement in satisfaction with respect to the control of patients with cognitive impairment, and c)in terms of resources, visits to emergency services and dementia consultations have decreased, although admissions to the psychogeriatric unit have increased.
CONCLUSIONS: The use of Tecuide as a telematic tool in the control of patients with cognitive impairment does not seem to be inferior to the usual controls in consultations and improves caregiver satisfaction.

To determine the incidence of primary caregiver burden in a cohort of family members of critically ill patients admitted to ICU and to identify risk factors related to its development in both the patient and the family member.
Prospective observational cohort study was conducted for 24 months.
Hospital Universitario Clínico San Cecilio, Granada.
The sample was the primary caregivers of all patients with risk factors for development of PICS (Post-Intensive Care Syndrome).
The follow-up protocol consisted of evaluation 3 months after discharge from the ICU in a specific consultation.
The scales used in patients were Barthel, SF-12, HADS, Pfeiffer, IES-6 and in relatives the Apgar and Zarit.
A total of 93 patients and caregivers were included in the follow-up. 15 relatives did not complete the follow-up questionnaires and were excluded from the study. The incidence of PICS-F (Family Post Intensive Care Syndrome) defined by the presence of primary caregiver burden in our cohort of patients is 34.6% (n=27), 95% CI 25.0-45.7. The risk factors for the development of caregiver burden are the presence of physical impairment, anxiety or post-traumatic stress in the patient, with no relationship found with the characteristics studied in the family member.
One out of 3 relatives of patients with risk factors for the development of PICS presents at 3 months caregiver burden. This is related to factors dependent on the patient\'s state of health.

BACKGROUND: Percutaneous endoscopic gastrostomy (PEG) is a useful intervention for patients with impaired swallowing and a functional gastrointestinal system. Neurological diseases that cause neuromotor dysphagia, brain tumors, and cerebrovascular disease are the most frequent indications; complications are rare, and morbidity and mortality rates are low.
OBJECTIVE: To describe the usefulness of PEG in patients with neurological diseases, and its impact on care, survival, and costs and benefits.
METHODS: We performed a retrospective observational study, reviewing clinical files of patients hospitalised at the National Institute of Neurology and Neurosurgery (years 2015-2017) who underwent PEG placement.
RESULTS: The sample included 51 patients: 62.7% were women and the mean (SD) age was 54.4 (18.6) years (range, 18-86). Diagnosis was tumor in 37.3% of cases and cerebrovascular disease in 33.3%. Sixteen patients (33.3%) died and 11 presented minor complications. The PEG tube remained in place for a mean of 9.14 months; in 52.9% of patients it was removed due to lack of improvement and/or tolerated oral intake, with removal occurring after a mean of 5.1 (4.4) months. Among patients\' family members, 78.4% reported a great benefit, 43.1% reported difficulty caring for the PEG, and 45.1% reported complicated care in general. The monthly cost of maintaining the PEG was €175.78 on average (range, 38.38-293.45).
CONCLUSIONS: This preliminary study reveals that PEG was well indicated in patients with neurological diseases, with survival rates similar to those reported in other studies with long follow-up periods. In patients with cerebrovascular disease, the PEG tube remained in place a mean of 9.14 months, during recovery of swallowing function; however, the cost is high for our population.

To know the influence of the companion in triadic clinical encounter on the quality of doctor-patient communication and the duration of the interview.
Cross-sectional descriptive study.
10 Primary Care Centers.
Resident doctors of Family and Community Medicine.
Peer review of video recordings of clinical demand consultations.
CICAA-2 questionnaire to assess communication skills (improvable, acceptable or adequate); age and sex, reasons for consultation and duration of the interview. Bivariate and multivariate analyses. Ethical authorization, oral informed consent and custody of the video recordings.
73 RD (53.8% women, 32.9±7.7 years) participated with 260 interviews (60.3% women and 2.1±1.0 clinical demands). 27.7% of consultations with a companion (female sex 65.3%). The mean duration of the interviews was 8.5±4.0min. Clinical encounters lasted longer when a companion attended (2.7±0.5min more; p<.001 Student t) and with a greater number of clinical demands (40% with ≥3 reasons, p=0.048 X2). The mean value of the total score of the CICAA-2 scale (46.9±16.5; difference 4.6±2.3) and Task 2 (39.3±15.8 with difference 4.4±2.2) were higher when companion was present (p<.05 Student t). The model obtained with logistic regression shows a longer duration of the consultation with a companion (OR 1.2; CI [1.1-1.3]) and possibly a better score in Task 2 communication skills (OR 1.02; CI [0.99-1.1]).
Triadic communications challenge the clinician\'s communication skills, improving their abilities to identify and understand patient problems, albeit at the cost of a greater investment of time.

BACKGROUND: Information on experience/management of severe hypoglycaemic events (SHEs) among people with insulin-treated diabetes (PWD) and caregivers (CGs) providing care to PWD was sought.
METHODS: An online cross-sectional survey was conducted in eight countries.
METHODS: PWD (aged≥18 years; self-reported type 1 [T1D] or insulin-treated type 2 [T2D] diabetes; experienced ≥1 SHE [hypoglycaemia requiring external assistance] in past 3 years); CGs (layperson aged ≥18 years; caring for PWD meeting all criteria above except age [≥4 years]). This descriptive analysis provides data from Spain. SHE-associated data relate to the most recent SHE.
RESULTS: Across all groups (T1D PWD, n=106; T2D PWD, n=88, T1D CG, n=87; T2D CG, n=96), 76-89% reported that the SHE occurred at home; most common cause was eating less than planned (38-53%). Most usual action during the SHE was to intake carbohydrates (67-84%); glucagon use was low (9-36%). Discussion of the SHE with their healthcare provider (HCP) was reported by 70-75% of PWD. During the SHE, 35-69% of PWD/CGs reported feeling scared, unprepared and/or helpless.
CONCLUSIONS: Most SHEs occurred outside the healthcare setting; treatment therefore depends greatly on CGs. SHEs have a negative emotional impact on PWD/CGs, underscoring the need for HCPs to discuss SHEs with PWD/CGs, and to provide tools and strategies to prevent and effectively manage SHEs.

OBJECTIVE: To develop an insight scale for Prader-Willi Syndrome (PWS), a genetically determined neurodevelopmental disorder with different psychopathological and behavioural problems.
METHODS: A sample of 36 PWS patients (58.3% women) attended at the Endocrinological Department of the Corporació Sanitària Parc Taulí (Sabadell, Barcelona) was evaluated. Insight was assessed by means of an adapted version of the Scale of Unawareness of Mental Disorder (SUMD), including three general insight dimensions: awareness of having a PWS, awareness of the effects of psychopharmacological medication and awareness of the social consequences, as well as three items that assess awareness of each particular symptom of the disease (obesity/overweight, excessive appetite and excessive food intake).
RESULTS: The final Scale included six items and demonstrated an adequate internal consistency (Cronbach Alfa of 0.857 for Caregivers and 0.798 for Clinicians) but a high inter-rate variability. External validation using an Analytical-Visual Insight Scale was adequate.
CONCLUSIONS: The Adapted version for Prader-Willi patients of the Scale of Unawareness of Mental Disorder (APW-SUD) showed adequate psychometric properties and it is an easy to administer means to assess insight in this population.

Dementia is a neurodegenerative disease that requires the accompaniment of a caregiver who is in charge of assisting and supervising basic and psychosocial needs. The objective of this article was to determine the influence of the caregiver on the cognitive and functional decline of patients with dementia. The method was a systematic review by searching the Scopus, Pubmed and Science Direct databases between the years 2010-2020. In conclusion, the informal caregiver condition was the most reported by the investigations, generally assumed by wives and children; Caregiver characteristics such as personality, subjective interpretations of the functional status of adults with dementia, and caregivers\' coping strategies were associated with a decrease in the rate of cognitive and functional impairment of people with dementia.

BACKGROUND: Type 1 diabetes mellitus (DM-1) is one of the most common chronic childhood diseases, and it is essential to optimize glycemic control in order to avoid complications. For years, interstitial glucose measurement systems (MGI systems) have been among the new technologies at the forefront of self-care.
OBJECTIVE: To determine the impact on the well-being of the caregivers of patients with DM-1 under 18 years of age, controlled at a Pediatric Diabetes Unit of a third level hospital, of the use of MGI systems.
METHODS: This was an observational, descriptive and analytical cohort study based on a questionnaire completed by the patients\' caregivers, as well as from the patient\'s clinical history.
RESULTS: There were 120 participants (55.5% males), with a mean age 13.20 +/- 3.71 years and mean glycosylated haemoglobin (HbA1c) 7.36% +/- 0.90. 52.5% of the sample used MGI systems. The caregivers of patients using MGI systems showed significantly higher scores (p < 0.05) regarding well-being, compared to the caregivers of patients not using this technology. In the former, a significant improvement (p < 0.05) in these variables with respect to the values prior to the beginning of their use was observed.
CONCLUSIONS: The use of MGI systems for diabetes self-management in our study led to a greater sense of well-being on the part of caregivers compared with before their introduction, as well as in comparison with those who continued to perform measurements using daily capillary glycemias.

To summarize the qualitative evidence on the role of care providers in the prevention of falls of persons over 65 years of age in centres and in the community.
Meta-summary of qualitative evidence following the aggregation method.
Extensive manual search of 16 databases (CINAHL, Pubmed/Medline, Embase, PsycInfo, Cochrane Library, PeDRO, Opengrey (Reports), Cuiden, Cuidatge, Enfispo, Medes, Lilacs, Teseo, Dissertation and Thesis Global and Ibecs), in English, French, Spanish and Portuguese; no time limit.
Selection and blind critical appraisal by pairs. A first relevance and relevance screening and a second critical appraisal screening were carried out. A total of 4170 articles were located; 41 qualitative articles were critically appraised and 31 were selected.
Data regarding author, year, study design, location, participants (number, age, sex and occupation), study methods and findings were extracted.
The analysis revealed four major themes: precipitating factors, preventive models, feelings and decision-making process. It also highlights the difficult act of ethical balance, the role of the institution in prevention and the fragmentation of care, as keys to successful implementation.
The findings show the complexity of fall prevention and the need to incorporate care providers\' opinions in preventive models.