Signal quality of home polygraphy in children and adolescents

Aim: The aims of the study were to examine the signal quality (SQ) of home polygraphy (PG) in children and adolescents and to compare automatic and manual scoring of the PGs. Methods: Clinical Trials Registration: NCT04964830. Participants and caregivers were instructed to set up the equipment and perform home PGs themselves. The PGs were analysed according to SQ and their interpretability and differences in automatic vs. manual scoring regarding apnoea-hypopnoea index (AHI), apnoea index (AI), hypopnoea index (HI) and oxygen desaturation index (ODI) were examined. Results: 54 healthy children aged 9-14 years participated in the study. 86% of the PGs were interpretable with mean SQ of 79.1% (CI 95%: 73.5%; 84.8%). Significant differences between the automatic and manual scoring were found for AHI, AI, HI and ODI (p < 0.0001). Conclusion: Home PGs of children and adolescents are feasible to be performed with good SQ. Significantly higher markers of sleep-disordered breathing were achieved in the automatic scoring in comparison with the manual scoring

Communication experience of individuals treated with home mechanical ventilation.

Background: Mechanical ventilatory support seriously affects speaking and communication, and earlier studies show that many ventilator-supported patients experience difficulties and frustration with their speech and voice production. Since there is a growing number of individuals who require mechanical ventilatory support and there is a paucity of studies that examine ventilator-supported communication, this research area needs to be developed to ensure adequate health services for this population. The present study focused on ventilator-supported communication from the point of view of individuals receiving home mechanical ventilation (HMV). Aims: The specific aim was to examine the communication experience of individuals receiving HMV. Methods & Procedures: A qualitative approach was adopted for this study, and data were collected by means of semi-structured interviews. Qualitative content analysis was used to structure, condense and interpret the data. The participants were recruited from the National Respiratory Centre (NRC) in Sweden, and included 19 individuals receiving HMV. Outcomes & Results: The main theme A long and lonely struggle to find a voice and six subthemes detailing different facets of it emerged from data analysis: Managing changed speech conditions, Prioritising voice, A third party supporting communication, Using communication to get things done, Depending on technology, and Facing ignorance. Important aspects influencing the ventilator-supported individuals' communicative performance (speech, support from others and technological solutions) are discussed. Conclusions & Implications: The study revealed that healthcare practitioners involved in the care of individuals receiving HMV need to improve their understanding and knowledge of issues related to ventilator-supported communication. Individuals receiving HMV encounter a needlessly long and lonely struggle to achieve effective communication. They face numerous challenges regarding their communication, and they need to be heard in both literal and figurative senses. To overcome these challenges they need support from competent healthcare practitioners and personal assistants, and continuous follow-up by speech and language therapists tailoring communicative solutions to fit individual needs

Strategy of changing from tracheostomy and non‐invasive mechanical ventilation to diaphragm pacing in children with congenital central hypoventilation syndrome

Congenital central hypoventilation syndrome (CCHS) is a rare disorder that affects central control of breathing and paediatric treatment varies worldwide. One approach is diaphragm pacing (DP), by phrenic nerve stimulation or direct diaphragm muscle stimulation, with or without a tracheostomy. In Sweden, non-invasive ventilation (NIV) has been the first-line ventilator support for patients with CCHS. However, disadvantages such as midface hypoplasia and unintentional leakage have required assessment over time. DP implants are provided at the National Reference Center for Diaphragm Pacing at Uppsala University Hospital, Sweden, at 3-4 years of age, when the upper airways have become more stable. Some international centres wait until children are older. Our aim was to evaluate switching patients with CCHS from mechanical ventilation, namely tracheostomy or NIV, to DP

Rapid maxillary expansion in children with nocturnal enuresis : A randomized placebo-controlled trial

Objective: To investigate whether rapid maxillary expansion (RME) is a useful treatment method for nocturnal enuresis (NE) and whether the treatment effect is due to placebo. The study also aimed to identify prognostic variables in patients responding to treatment. Materials and Methods: Thirty-eight children with therapy-resistant NE were recruited and randomized into two groups: the intervention group or placebo group. Both groups were treated with RME, but the placebo group received treatment with a sham appliance for 2 weeks before having the actual treatment. A medical history focused on micturition habits, previous treatment, heredity, and sleep disorders was taken. Daytime voided volumes and nocturnal urine production during wet nights were recorded before the intervention. Results: Of the 38 patients recruited, two dropped out as one patient was unable to take dental impressions and one refused to have the appliance fitted. There was a statistically significant reduction of wet nights after the RME treatment (P<.001). No significant reduction was found after the placebo treatment (P<.40). Eleven patients (35%) had their enuresis frequency reduced by >50%. Large voiding volume and a wide maxilla at baseline had a strong association with positive treatment outcome. Conclusions: RME has a modest effect on children with therapy-resistant NE. The treatment outcome does not seem to be due to a placebo effect of the appliance. A wide maxillary width and large voiding volume at baseline seem to be positive predictors regarding response to treatment

Young adults’ narratives about living with home mechanical ventilation – a phenomenological hermeneutical study

Purpose An increasing number of children and young adults with complex medical conditions and respiratory failure are treated with home mechanical ventilation (HMV). The current study aimed to describe how young adults using HMV experience their everyday life with the ventilator, their physical impairments and their opportunities for an educational and professional career. Materials and methods Data were collected via narrative interviews with nine young HMV users (3 females and 6 males, aged 18–31 years) in their homes. Two were ventilated invasively, six were ventilated non-invasively and one was treated with continuous positive airway pressure (CPAP) via facemask. Data were analysed using a phenomenological hermeneutical method. Result A multi-professional team contributed to participants’ safety and ability to participate in society through higher education and professional work. A good and valuable life, mostly feeling healthy were experienced but also prejudice and stiffened social society structures. Conclusion The findings of this study prove the importance of having long-standing access to a competent and supportive available multi-professional healthcare team when living with a long-term complex condition. These teams provided well-functioning human and technological support in everyday lives. Implications for Rehabilitation · An increasing number of children and young adults are treated with home mechanical ventilation due to respiratory failure. · The home mechanical ventilation treatment provided rest from breathing and improved sleep quality in such a way that work and higher studies could be managed. · Longstanding access to a supportive multi-professional healthcare team provided feelings of being safe, which in turn boosted self-confidence in life and preparedness to meet new challenges