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| 2. |
- Dellenmark-Blom, Michaela, 1983, et al.
(författare)
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Postoperative morbidity and health-related quality of life in children with delayed reconstruction of esophageal atresia: a nationwide Swedish study
- 2022
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Ingår i: Orphanet Journal of Rare Diseases. - : Springer Science and Business Media LLC. - 1750-1172. ; 17:1
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Tidskriftsartikel (refereegranskat)abstract
- Background In 10-15% of children with esophageal atresia (EA) delayed reconstruction of esophageal atresia (DREA) is necessary due to long-gap EA and/or prematurity/low birth weight. They represent a patient subgroup with high risk of complications. We aimed to evaluate postoperative morbidity and health-related quality of life (HRQOL) in a Swedish national cohort of children with DREA. Methods Postoperative morbidity, age-specific generic HRQOL (PedsQL((TM)) 4.0) and condition-specific HRQOL (The EA-QOL questionnaires) in children with DREA were compared with children with EA who had primary anastomosis (PA). Factors associated with the DREA group's HRQOL scores were analyzed using Mann-Whitney U-test and Spearman's rho. Clinical data was extracted from the medical records. Significance level was p < 0.05. Results Thirty-four out of 45 families of children with DREA were included and 30 returned the questionnaires(n = 8 children aged 2-7 years; n = 22 children aged 8-18 years). Compared to children with PA(42 children aged 2-7 years; 64 children aged 8-18 years), there were no significant differences in most early postoperative complications. At follow-up, symptom prevalence in children aged 2-7 with DREA ranged from 37.5% (heartburn) to 75% (cough). Further digestive and respiratory symptoms were present in >= 50%. In children aged 8-18, it ranged from 14.3% (vomiting) to 40.9% (cough), with other digestive and airway symptoms present in 19.0-27.3%. Except for chest tightness (2-7 years), there were no significant differences in symptom prevalence between children with DREA and PA, nor between their generic or condition-specific HRQOL scores (p > 0.05). More children with DREA underwent esophageal dilatations (both age groups), gastrostomy feeding (2-7 years), and antireflux treatment (8-18 years), p < 0.05. Days to hospital discharge after EA repair and a number of associated anomalies showed a strong negative correlation with HRQOL scores (2-7 years). Presence of cough, airway infection, swallowing difficulties and heartburn were associated with lower HRQOL scores (8-18 years), p < 0.05. Conclusions Although children with DREA need more treatments, they are not a risk group for postoperative morbidity and impaired HRQOL compared with children with PA. However, those with a long initial hospital stay, several associated anomalies and digestive or respiratory symptoms risk worse HRQOL. This is important information for clinical practice, families and patient stakeholders.
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| 3. |
- Dellenmark-Blom, Michaela, et al.
(författare)
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Prevalence of Mental Health Problems, Associated Factors, and Health-Related Quality of Life in Children with Long-Gap Esophageal Atresia in Sweden
- 2023
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Ingår i: Journal of Pediatric Surgery. - : Elsevier. - 0022-3468 .- 1531-5037. ; 58:9, s. 1646-1655
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Tidskriftsartikel (refereegranskat)abstract
- Background: Children with long-gap esophageal atresia (LGEA) face a high risk of digestive and respiratory morbidity, but their mental health outcomes have not been investigated. We aimed to identify the prevalence of mental health problems in children with LGEA, associated factors and health-related quality of life (HRQOL).Methods: Twenty-six children with LGEA aged 3-17 were recruited nationwide in Sweden. One of their parents and adolescents aged 11-17 completed information on the child's mental health (Strength and Difficulties Questionnaire), generic (PedsQL 4.0) and condition-specific HRQOL (EA-QOL). Parents gave information on current child symptomatology. Mental health level was determined using validated norms; abnormal >= 90 percentile/borderline >= 80 percentile/normal. Elevated levels were considered borderline/abnormal. Data were analyzed using descriptives, correlation and Mann-Whitney-U test. Significance level was p < 0.05.Results: Twelve children with LGEA aged 3-17 (46%) had elevated scores of >= 1 mental health domain in parent-reports, whereas 2 adolescents (15%) in self-reports. In parent-reports, 31% of the children had elevated levels of peer relationship problems, with associated factors being child sex male (p = 0.037), airway infections (p = 0.002) and disturbed night sleep (p = 0.025). Similarly, 31% showed elevated levels of hyperactivity/inattention, and associated factors were male sex (p = 0.005), asthma (p = 0.028) and disturbed night sleep (p = 0.036). Elevated levels of emotional symptoms, seen in 20%, were related to swallowing difficulties (p = 0.038) and vomiting problems (p = 0.045). Mental health problems correlated negatively with many HRQOL domains (p < 0.05).Conclusions: Children with LGEA risk mental health difficulties according to parent-reports, especially peer relationship problems and hyperactivity/inattention, with main risk factors being male sex, airway problems and sleep disturbances. This should be considered in follow-up care and research, particularly since their mental health problems may impair HRQOL.
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| 4. |
- Dellenmark-Blom, Michaela, 1983, et al.
(författare)
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Schooling experiences in children with long-gap esophageal atresia compared with children with esophageal atresia and primary anastomosis: a Swedish study
- 2023
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Ingår i: Orphanet Journal of Rare Diseases. - : BioMed Central (BMC). - 1750-1172. ; 18:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundChildren with long-gap esophageal atresia (LGEA) risk living with aerodigestive morbidity and mental health difficulties. No previous study has investigated their experiences of schooling, despite the importance of schools in children's development, learning and social relationships. We aimed to describe experiences of schooling in children with LGEA in Sweden in comparison with children with EA who had primary anastomosis.MethodChildren with LGEA aged 3-17 were recruited nationwide in Sweden. One parent completed a survey on their child's school-based supports (according to definitions from the Swedish National Agency for Education), school absence, school satisfaction, school functioning (PedsQL 4.0), mental health (Strength and Difficulties Questionnaire) and current symptomatology. School data were compared between 26 children with LGEA to that from 95 children with EA who had PA, a hypothesized milder affected group. Mental health level was determined using validated norms; abnormal & GE; 90 percentile. Data were analyzed using descriptives, correlation and Mann-Whitney-U test. Significance level was p < 0.05.ResultsFormal school-based support was reported in 17 (65.4%) children with LGEA and concerned support with nutritional intake (60%), education (50%) and medical/special health needs (35%). The prevalence of school-based support was significantly higher compared to children with PA overall (36.8%, p = 0.013) and regarding nutritional intake support (20%, p < 0.001). In children with LGEA, school-based support was related to low birth weight (p = 0.036), young child age (p = 0.014), height & LE; -2SD for age/sex (p = 0.024) and an increased number of aerodigestive symptoms (p < 0.05). All children with LGEA who had abnormal mental health scores had school-based support, except for one child. Nine children with LGEA (36%) had school absence & GE; 1times/month the past year, more frequently because of colds/airway infections (p = 0.045) and GI-specific problems compared to PA (p = 0.003). School functioning scores were not significantly different from children with PA (p = 0.34) but correlated negatively with school-based support (< 0.001) and school absence (p = 0.002). One parent out of 26 reported their child's school satisfaction as "not good".ConclusionsChildren with LGEA commonly receive school-based support, reflecting multifaceted daily needs and disease severity. School absence is frequent and related to poorer school functioning. Future research focusing on academic achievement in children with EA is needed.
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| 5. |
- Jarpestam, S., et al.
(författare)
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Post-cardiac arrest intensive care in Sweden: A survey of current clinical practice
- 2023
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Ingår i: Acta Anaesthesiologica Scandinavica. - 0001-5172 .- 1399-6576. ; 67:9, s. 1249-1255
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Tidskriftsartikel (refereegranskat)abstract
- Background: European guidelines recommend targeted temperature management (TTM) in post-cardiac arrest care. A large multicentre clinical trial, however, showed no difference in mortality and neurological outcome when comparing hypothermia to normothermia with early treatment of fever. The study results were valid given a strict protocol for the assessment of prognosis using defined neurological examinations. With the current range of recommended TTM temperatures, and applicable neurological examinations, procedures may differ between hospitals and the variation of clinical practice in Sweden is not known. Aim: The aim of this study was to investigate current practice in post-resuscitation care after cardiac arrest as to temperature targets and assessment of neurological prognosis in Swedish intensive care units (ICUs). Methods: A structured survey was conducted by telephone or e-mail in all Levels 2 and 3 (= 53) Swedish ICUs during the spring of 2022 with a secondary survey in April 2023. Results: Five units were not providing post-cardiac arrest care and were excluded. The response rate was 43/48 (90%) of the eligible units. Among the responding ICUs, normothermia (36-37.7 degrees C) was applied in all centres (2023). There was a detailed routine for the assessment of neurological prognosis in 38/43 (88%) ICUs. Neurological assessment was applied 72-96 h after return of spontaneous circulation in 32/38 (84%) units. Electroencephalogram and computed tomography and/or magnetic resonance imaging were the most common technical methods available. Conclusion: Swedish ICUs use normothermia including early treatment of fever in post-resuscitation care after cardiac arrest and almost all apply a detailed routine for the assessment of neurological prognosis. However, available methods for prognostic evaluation varies between hospitals.
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| 6. |
- Jönsson, Linus, et al.
(författare)
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Progression analysis versus traditional methods to quantify slowing of disease progression in Alzheimer’s disease
- 2024
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Ingår i: Alzheimer's Research and Therapy. - 1758-9193. ; 16:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: The clinical meaningfulness of the effects of recently approved disease-modifying treatments (DMT) in Alzheimer’s disease is under debate. Available evidence is limited to short-term effects on clinical rating scales which may be difficult to interpret and have limited intrinsic meaning to patients. The main value of DMTs accrues over the long term as they are expected to cause a delay or slowing of disease progression. While awaiting such evidence, the translation of short-term effects to time delays or slowing of progression could offer a powerful and readily interpretable representation of clinical outcomes. Methods: We simulated disease progression trajectories representing two arms, active and placebo, of a hypothetical clinical trial of a DMT. The placebo arm was simulated based on estimated mean trajectories of clinical dementia rating scale–sum of boxes (CDR-SB) recordings from amyloid-positive subjects with mild cognitive impairment (MCI) from Alzheimer’s Disease Neuroimaging Initiative (ADNI). The active arm was simulated to show an average slowing of disease progression versus placebo of 20% at each visit. The treatment effects in the simulated trials were estimated with a progression model for repeated measures (PMRM) and a mixed model for repeated measures (MMRM) for comparison. For PMRM, the treatment effect is expressed in units of time (e.g., days) and for MMRM in units of the outcome (e.g., CDR-SB points). PMRM results were implemented in a health economics Markov model extrapolating disease progression and death over 15 years. Results: The PMRM model estimated a 19% delay in disease progression at 18 months and 20% (~ 7 months delay) at 36 months, while the MMRM model estimated a 25% reduction in CDR-SB (~ 0.5 points) at 36 months. The PMRM model had slightly greater power compared to MMRM. The health economic model based on the estimated time delay suggested an increase in life expectancy (10 months) without extending time in severe stages of disease. Conclusion: PMRM methods can be used to estimate treatment effects in terms of slowing of progression which translates to time metrics that can be readily interpreted and appreciated as meaningful outcomes for patients, care partners, and health care practitioners.
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| 7. |
- Lilja, Linus, et al.
(författare)
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Application of a standardized EEG pattern classification in the assessment of neurological prognosis after cardiac arrest: A retrospective analysis
- 2021
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Ingår i: Resuscitation. - : Elsevier BV. - 0300-9572. ; 165, s. 38-44
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Electroencephalogram (EEG) is used in the neurological prognostication after cardiac arrest. “Highly malignant” EEG patterns classified according to Westhall have a high specificity for poor neurological outcome when applied within protocols of recent studies. However, their predictive performance when applied in everyday clinical practice has not been investigated. We studied the prognostic accuracy and the interrater agreement when standardized EEG patterns were analysed and compared to neurological outcome in a patient cohort at a tertiary centre not involved in the original study of the standardized EEG pattern classification. Methods: Comatose patients treated for out-of-hospital cardiac arrest were included. Poor outcome was defined as Cerebral Performance Category 3–5. Two senior consultants and one resident in clinical neurophysiology, blinded to clinical data and outcome, independently reviewed their EEG registrations and categorised the pattern as “highly malignant”, “malignant” or “benign”. These categories were compared to neurological outcome at hospital discharge. Interrater agreement was assessed using Cohen's Kappa. Results: In total, 62 patients were included. The median (IQR) time to EEG was 59 (42–91) h after return of spontaneous circulation. Poor outcome was found in 52 (84%) patients. In 21 patients at least one of the raters considered the EEG to contain a “highly malignant” pattern, all with poor outcome (42% sensitivity, 100% specificity). The interrater agreement varied from kappa 0.62 to 0.29. Conclusion: “Highly malignant” patterns predict poor neurological outcome with a high specificity in everyday practice. However, interrater agreement may vary substantially even between experienced EEG interpreters. © 2021
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| 8. |
- Lilja, Linus, et al.
(författare)
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Assessing neurological prognosis in post-cardiac arrest patients from short vs plain text EEG reports : A survey among intensive care clinicians
- 2021
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Ingår i: Resuscitation. - : Elsevier. - 0300-9572 .- 1873-1570. ; 159, s. 7-12
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Tidskriftsartikel (refereegranskat)abstract
- bElectroencephalography (EEG) patterns are predictive of neurological prognosis in comatose survivors from cardiac arrest but intensive care clinicians are dependent of neurophysiologist reports to identify specific patterns. We hypothesized that the proportion of correct assessment of neurological prognosis would be higher from short statements confirming specific EEG patterns compared with descriptive plain text reports.Methods: Volunteering intensive care clinicians at two university hospitals were asked to assess the neurological prognosis of a fictional patient with high neuron specific enolase. They were presented with 17 authentic plain text reports and three short statements, confirming whether a “highly malignant”, “malignant” or “benign” EEG pattern was present. Primary outcome was the proportion of clinicians who correctly identified poor neurological prognosis from reports consistent with highly malignant EEG patterns. Secondary outcomes were how the prognosis was assessed from reports consistent with malignant and benign patterns.Results: Out of 57 participants, poor prognosis was correctly identified by 61% from plain text reports and by 93% from the short statement “highly malignant” EEG patterns. Unaffected prognosis was correctly identified by 28% from plain text reports and by 40% from the short statement “malignant” patterns. Good prognosis was correctly identified by 64% from plain text reports and by 93% from the short statement “benign” pattern.Conclusion: Standardized short statement, “highly malignant EEG pattern present”, as compared to plain text EEG descriptions in neurophysiologist reports, is associated with more accurate identification of poor neurological prognosis in comatose survivors of cardiac arrest. © 2020 The Authors
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| 9. |
- Lilja, Linus
(författare)
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Assessment of neurological prognosis after cardiac arrest – clinical and neurophysiological aspects
- 2021
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Post-resuscitation care after cardiac arrest in adults includes targeted temperature management (TTM) to mitigate secondary brain injury. The recommended target temperature is between 32°C and 36°C after a large, international, randomized trial showed comparable outcomes (33°C vs. 36°C). Neurological prognostication is an essential part of post-resuscitation care, where clinical neurologic examination, including pupillary light reflex, is the cornerstone. Neurophysiologic methods such as electroencephalogram (EEG) and somatosensory evoked potentials (SSEP), are often used because of their relative insensitivity to other organ failures. Aim: The aim was to evaluate a clinical routine change in TTM from 34°C to 36°C (Paper I) and prognostic accuracy, as well as the interrater agreement of standardized EEG patterns (Paper II). Additionally, we described how the information in written EEG reports is perceived by intensive care unit (ICU) clinicians assessing neurological prognosis (Paper III). The study protocol is provided for an ongoing study focused on describing possible interrelationships between the neurological pupil index (NPi) and SSEP (Paper IV). Methods: The first study was a retrospective, before-and-after, observational study that included out-of-hospital cardiac arrest (OHCA) patients admitted to the central-ICU, Sahlgrenska University Hospital, either 2010 or 2014. The EEG studies (Papers II and III) were retrospective and included OHCA patients evaluated with EEG, during the period 2010–2014. The EEG recordings were reviewed by three clinical neurophysiologists and classified according to standardized EEG pattern categories (“highly malignant”, “malignant”, and “benign”), and the pattern category was compared with patient neurological performance at hospital discharge (Paper II). The third study (Paper III) was an answer-sheet survey based on a fictional, cardiac arrest patient with one marker of poor neurological prognosis present. ICU clinicians at two university hospitals were presented with two types of EEG reports (plain-text and short standardized statement) and then asked to assess the neurological prognosis of the patient (“poor”, “not affected”, or “good”). The study protocol (Paper IV) describes a prospective, observational study with consecutive inclusion. Results: The 34°C and 36°C TTM groups displayed similar survival and neurological outcomes at all time points (Paper I). “Highly malignant” patterns were 100% specific for poor prognosis, whereas many survivors had a “malignant” pattern. The interrater agreement varied between kappa 0.62 and 0.29 (Paper II). The standardized statement “highly malignant EEG pattern present” was associated with a higher proportion of correct identification of poor prognosis by clinicians as compared with the descriptive plain-text reports (Paper III). The study protocol (Paper IV) will include all post-cardiac patients evaluated with pupillometry, including NPi, and SSEP, at >48 h after cardiac arrest. The ability of NPi to predict an absent SSEP response and their prognostic accuracy for poor outcome will be calculated based on neurological performance at hospital discharge. Conclusion: Either 34°C or 36°C can be used for TTM at our department with sustained patient outcomes. “Highly malignant EEG patterns” are highly specific for poor prognosis and the clinical value of the EEG report might be improved by clearly stating the presence of such patterns. If specific NPi thresholds can predict the absence of SSEP response, a bedside NPi measurement can be used as a proxy for SSEP testing. In certain patients, SSEP can be excluded to save resources during multimodal prognostication after cardiac arrest.
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| 10. |
- Lilja, Linus, et al.
(författare)
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Target temperature 34 vs. 36°C after out-of-hospital cardiac arrest - a retrospective observational study.
- 2017
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Ingår i: Acta anaesthesiologica Scandinavica. - : Wiley. - 1399-6576 .- 0001-5172. ; 61:9, s. 1176-1183
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Tidskriftsartikel (refereegranskat)abstract
- Intensive care for comatose survivors of cardiac arrest includes targeted temperature management (TTM) to attenuate cerebral reperfusion injury. A recent multi-center clinical trial did not show any difference in mortality or neurological outcome between TTM targeting 33°C or 36°C after out-of-hospital-cardiac-arrest (OHCA). In our institution, the TTM target was changed accordingly from 34 to 36°C. The aim of this retrospective study was to analyze if this change had affected patient outcome.Intensive care registry and medical record data from 79 adult patients treated for OHCA with TTM during 2010 (n=38; 34°C) and 2014 (n=41; 36°C) were analyzed for mortality and neurological outcome were assessed as cerebral performance category. Student's t-test was used for continuous data and Fischer's exact test for categorical data, and multivariable logistic regression was applied to detect influence from patient factors differing between the groups.Witnessed arrest was more common in 2010 (95%) vs. 2014 (76%) (P=0.03) and coronary angiography was more common in 2014 (95%) vs. 2010 (76%) (P=0.02). The number of patients awakening later than 72h after the arrest did not differ. After adjusting for gender, hypertension, and witnessed arrest, neither 1-year mortality (P=0.77), nor 1-year good neurological outcome (P=0.85) differed between the groups.Our results, showing no difference between TTM at 34°C and TTM at 36°C as to mortality or neurological outcome after OHCA, are in line with the previous TTM-trial results, supporting the use of either target temperature in our institution.
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