Transplantation-free survival after Norwood surgery for hypoplastic left heart syndrome with aortic atresia: A Swedish national cohort study.

BACKGROUND: Norwood surgery has been available in Sweden since 1993. In this national cohort study, we analysed transplantation-free survival after Norwood surgery for hypoplastic left heart syndrome with aortic atresia. METHODS: Patients were identified from the complete national cohort of live-born with hypoplastic left heart syndrome/aortic atresia 1993-2010. Analysis of survival after surgery was performed using Cox proportional hazards models for the total cohort and for birth period and gender separately. Thirty-day mortality and inter-stage mortality were analysed. Patients were followed until September 2016. RESULTS: The 1993-2010 cohort consisted of 208 live-born infants. Norwood surgery was performed in 121/208 (58%). The overall transplantation-free survival was 61/121 (50%). The survival was higher in the late period (10-year survival 63%) than in the early period (10-year survival 40%) (p = 0.010) and lower for female (10-year survival 34%) than for male patients (10-year survival 59%) (p = 0.002). Inter-stage mortality between stages I and II decreased from 23 to 8% (p = 0.008). For male patients, low birthweight in relation to gestational age was a factor associated with poor outcome. CONCLUSION: The survival after Norwood surgery for hypoplastic left heart syndrome/aortic atresia improved by era of surgery, mainly explained by improved survival between stages I and II. Female gender was a significant risk factor for death or transplantation. For male patients, there was an increased risk of death when birthweight was lower than expected in relation to gestational age.

Using an interactive digital calendar with mobile phone reminders by senior people - a focus group study.

BACKGROUND: New technologies such as mobile/smartphones have the potential to help senior people perform everyday activities. However, senior people may find it difficult using mobile/smartphones, especially the digital calendar and short text message features. Therefore, senior people might need user-friendly, flexible, and interactive digital calendars that provide them with active reminders about their everyday activities. This study focuses on community dwelling seniors' experiences learning and using RemindMe, an interactive digital calendar with active reminders, as part of customizing an intervention appropriate for senior people with cognitive impairments. METHODS: Four focus groups were conducted with 20 community dwelling seniors (11 men and 9 women) who all had used RemindMe for six weeks. The focus groups were tape recorded, transcribed verbatim, and analysed using content analysis. RESULTS: For participants in this study, using a calendar was an essential part of their everyday lives, but only a few had experiences using a digital calendar. Although the participants described RemindMe as easy to use, they had a difficult time incorporating RemindMe into their daily routines. In part, these difficulties were the result of the participants needing to change their mobile/smartphone routines. Some participants felt that using an interactive digital calendar was a sign of modernity allowing them to take part in the society at large, but others felt that their inability to use the technology was due to their age, dependence, and loss of function. Participants found that receiving active reminders through short text messages followed by actively acknowledging the reminder helped them perform more everyday life activities. This feature gave them a higher sense of independence and control. CONCLUSIONS: Community dwelling seniors found that RemindMe was easy to learn and to use, although they also found it challenging to integrate into their everyday lives. For senior people to make the effort to develop new routines for mobile/smartphone use, a prerequisite for using a digital calendar, they need to be motivated and believe that the technology will make their lives better.

Development of a Questionnaire to Evaluate Out-of-Home Participation for People With Dementia.

OBJECTIVE: We describe the development of a questionnaire, Participation in Activities and Places Outside Home (ACT-OUT), for older adults with cognitive impairment and align it to people with mild- to moderate-stage dementia. METHOD: ACT-OUT was developed in a cross-cultural collaboration in combination with three rounds of cognitive interviews in Switzerland with 26 older adults without cognitive impairment and five older adults with dementia. Qualitative data from the interviews were analyzed using a constant comparison approach. RESULTS: The final ACT-OUT Version 1.0 consists of three parts: (1) questions targeting places older adults visit; (2) questions on aspects influencing participation, such as transportation, familiarity, and risk perception; and (3) questions on perception of self. CONCLUSION: The development of an instrument such as ACT-OUT is more a cyclical than a linear process. This study is a first step toward a more systematic evaluation of out-of-home participation among older adults with and without dementia.

Can the everyday technology use questionnaire predict overall functional level among older adults with mild cognitive impairment or mild-stage alzheimer's disease? - a pilot study.

INTRODUCTION: The number of older adults living with mild cognitive impairment (MCI) or mild-stage Alzheimer's disease (AD) is increasing and they are often expected to live in their own homes without support, despite limited ability to perform daily life activities. The Everyday Technology Use Questionnaire (ETUQ) has proven to be able to separate these groups and might also have potential to predict overall functional level (need of assistance in daily life activities) among them. AIM: To investigate whether the ETUQ can predict overall functional level among older adults with MCI or mild-stage AD. METHOD: Participants were older adults with a mean age of 76 years with MCI (n = 28) or mild-stage AD (n = 39). A three-step scale indicating (i) independence, (ii) need for minimal assistance or (iii) need for moderate to maximal assistance in daily life was dichotomised in two ways and used as outcome variables in two logistic regression models. Predictors in both models were perceived ability to use everyday technology (ET) and amount of relevant everyday technologies measured by the ETUQ. Ethical approval was obtained from the regional Ethical Committee. RESULT: Perceived ability to use ET discriminated individuals who were independent or in need of minimal support from those in need of moderate to maximal assistance (OR = 1.82, p < 0.01, confidence interval = 95%; 1.76-2.82). The amount of relevant everyday technologies discriminated individuals who were independent from those in need of assistance at any level (OR = 1.39; p < 0.01; confidence interval = 95%; 1.11-1.75). CONCLUSION: Both perceived ability to use ET and amount of relevant everyday technologies had potential to predict overall function but at different levels. The findings support the predictive validity of the ETUQ and suggest further research for the development of clinical cut-off criteria.

The hemodynamics of late-onset intrauterine growth restriction by MRI.

BACKGROUND: Late-onset intrauterine growth restriction (IUGR) results from a failure of the placenta to supply adequate nutrients and oxygen to the rapidly growing late-gestation fetus. Limitations in current monitoring methods present the need for additional techniques for more accurate diagnosis of IUGR in utero. New magnetic resonance imaging (MRI) technology now provides a noninvasive technique for fetal hemodynamic assessment, which could provide additional information over conventional Doppler methods. OBJECTIVE: The objective of the study was to use new MRI techniques to measure hemodynamic parameters and brain growth in late-onset IUGR fetuses. STUDY DESIGN: This was a prospective observational case control study to compare the flow and T2 of blood in the major fetal vessels and brain imaging findings using MRI. Indexed fetal oxygen delivery and consumption were calculated. Middle cerebral artery and umbilical artery pulsatility indexes and cerebroplacental ratio were acquired using ultrasound. A score of ≥ 2 of the 4 following parameters defined IUGR: (1) birthweight the third centile or less or 20% or greater drop in the centile in estimated fetal weight; (2) lowest cerebroplacental ratio after 30 weeks less than the fifth centile; (3) ponderal index < 2.2; and (4) placental histology meets predefined criteria for placental underperfusion. Measurements were compared between the 2 groups (Student t test) and correlations between parameters were analyzed (Pearson's correlation). MRI measurements were compared with Doppler parameters for identifying IUGR defined by postnatal criteria (birthweight, placental histology, ponderal index) using receiver-operating characteristic curves. RESULTS: We studied 14 IUGR and 26 non-IUGR fetuses at 35 weeks' gestation. IUGR fetuses had lower umbilical vein (P = .004) and pulmonary blood flow (P = .01) and higher superior vena caval flow (P < .0001) by MRI. IUGR fetuses had asymmetric growth but smaller brains than normal fetuses (P < .0001). Newborns with IUGR also had smaller brains with otherwise essentially normal findings on MRI. Vessel T2s, oxygen delivery, oxygen consumption, middle cerebral artery pulsatility index, and cerebroplacental ratio were all significantly lower in IUGR fetuses, whereas there was no significant difference in umbilical artery pulsatility index. IUGR score correlated positively with superior vena caval flow and inversely with oxygen delivery, oxygen consumption, umbilical vein T2, and cerebroplacental ratio. Receiver-operating characteristic curves revealed equivalent performance of MRI and Doppler techniques in identifying IUGR that was defined based on postnatal parameters with superior vena caval flow area under the curve of 0.94 (95% confidence interval, 0.87-1.00) vs a cerebroplacental ratio area under the curve of 0.80 (95% confidence interval, 0.64-0.97). CONCLUSION: MRI revealed the expected circulatory redistribution in response to hypoxia in IUGR fetuses. The reduced oxygen delivery in IUGR fetuses indicated impaired placental oxygen transport, whereas reduced oxygen consumption presumably reflected metabolic adaptation to diminished substrate delivery, resulting in slower fetal growth. Despite brain sparing, placental insufficiency limits fetal brain growth. Superior vena caval flow and umbilical vein T2 by MRI may be useful new markers of late-onset IUGR.

Pulse oximetry home monitoring in infants with single-ventricle physiology and a surgical shunt as the only source of pulmonary blood flow.

BACKGROUND: Shunt occlusion is a major cause of death in children with single ventricle. We evaluated whether one daily measurement of oxygen saturation at home could detect life-threatening shunt dysfunction. METHODS: A total of 28 infants were included. Parents were instructed to measure saturation once daily and if less than or equal to 70% repeat the measurement. Home monitoring was defined as positive when a patient was admitted to Queen Silvia Children's Hospital because of saturation less than or equal to 70% on repeated measurement at home. A shunt complication was defined as arterial desaturation and a narrowing of the shunt that resulted in an intervention to relieve the obstruction or in death. Parents' attitude towards the method was investigated using a questionnaire. RESULTS: A shunt complication occurred out of hospital eight times in eight patients. Home monitoring was positive in five out of eight patients. In two patients, home monitoring was probably life saving; in one of them, the shunt was replaced the same day and the other had an emergency balloon dilatation of the shunt. In three out of eight patients, home monitoring was negative; one had an earlier stage II and survived, but two died suddenly at home from thrombotic shunt occlusion. On seven occasions in three patients home monitoring was positive but there was no shunt complication. The method was well accepted by the parents according to the results of the questionnaire. CONCLUSION: Home monitoring of oxygen saturation has the potential to detect some of the life-threatening shunt obstructions between stages I and II in infants with single-ventricle physiology.

Frail community-dwelling older persons' everyday lives and their experiences of rehabilitation - a qualitative study.

BACKGROUND: The number of older persons with frailty is increasing, and rehabilitation to improve the consequences of frailty are important for both the individual and society. However, the perspective of older persons themselves in research and planning of interventions is scarce. AIM: The aim of this study was to describe frail older persons' everyday lives and their experiences and views of rehabilitation. MATERIAL AND METHODS: Twenty older persons were interviewed, and analyses were performed using a qualitative content analysis method. RESULTS: The two main categories were 'Frailty impacts everyday lifé and 'Experiences and perceptions of rehabilitation'. The participants described that they had to adapt their everyday lives in line with their health conditions. They all used strategies and were dependent on support in their activities of daily living. Their social network had decreased. All participants strived to stay active and independent, and wanted rehabilitation and support from professionals, experiencing decreased access to rehabilitation. CONCLUSIONS AND SIGNIFICANCE: Frail older persons are a vulnerable group who often need support in everyday life. There is room for improvement when it comes to helping frail older persons to stay active and facilitate participation in both individual and group interventions.

Development of heart block in children of SSA/SSB-autoantibody-positive women is associated with maternal age and displays a season-of-birth pattern.

OBJECTIVE: Congenital heart block may develop in the fetuses of Ro/SSA-positive and La/SSB-positive mothers. Recurrence rates of only 10-20% despite persisting maternal antibodies indicate that additional factors are critical for the establishment of heart block. The authors investigated the influence of other maternal and fetal factors on heart block development in a Swedish population-based cohort. METHODS: The influence of fetal gender, maternal age, parity and time of birth on heart block development was analysed in 145 families, including Ro/La-positive (n=190) and Ro/La-negative (n=165) pregnancies. RESULTS: There was a recurrence rate of 12.1% in Ro/La-positive women, and no recurrence in Ro/La-negative women. Fetal gender and parity did not influence the development of heart block in either group. Maternal age in Ro/La-positive pregnancies with a child affected by heart block was, however, significantly higher than in pregnancies resulting in babies without heart block (p<0.05).Seasonal timing of pregnancy influenced the outcome. Gestational susceptibility weeks 18-24 occurring during January-March correlated with a higher proportion of children with heart block and lower vitamin D levels during the same period in a representative sample of Swedish women and a corresponding higher proportion of children with heart block born in the summer (p<0.02). Maternal age or seasonal timing of pregnancy did not affect the outcome in Ro/La-negative pregnancies. CONCLUSION: This study identifies maternal age and seasonal timing of pregnancy as novel risk factors for heart block development in children of Ro/La-positive women. These observations may be useful for counselling when pregnancy is considered.

Treatment decision in a 4-year-old-boy with left ventricular outpouching after advanced hemodynamical flow evaluation with 4Dflow CMR: A case report.

Background: The present study presents a diagnostic course for the characterization of a congenital left ventricular outpouching (LVO) in a 4-year-old boy with severe neonatal heart failure, evaluating the added value of cardiac magnetic resonance (CMR) 4Dflow. Case presentation: A boy, born at full term, presented with heart failure immediately after birth. Echocardiography showed dilated left ventricle with poor function and LVO was initially interpreted as an aneurysm. No infection, inflammation, or other cause for heart failure was found. With intensive medical treatment, the heart function returned to normal, and eventually, all medication was terminated. At follow-up, surgical treatment of the LVO was discussed but after CMR 4Dflow, a thorough evaluation of the function of the left ventricle as well as the LVO was possible and the LVO was determined a double-chambered left ventricle with a good prognosis. Conclusions: The present case demonstrates the clinical usability of CMR 4Dflow for improved decision-making and risk assessment, revealing advanced hemodynamic flow patterns with no need for operation.

Familiarity and participation outside home for persons living with dementia.

Familiarity is important for persons living with dementia who participate outside home. When familiarity is challenged, such participation may be difficult. This ethnographic study clarifies how familiarity is experienced by persons with dementia in performing activities and visiting places, and how familiarity contributes to maintaining participation outside home. Nine participants were interviewed in their home and while visiting familiar places. Data were content analysed using a constant comparative method. The findings suggest that persons with dementia experience familiarity as continuous and whole, through occurrences that support personal territories. Landmarks and objects enhance the experience of familiarity. Familiarity that is continuously challenged may render participation outside home fragile.

How accessible are grocery shops for people with dementia? A qualitative study using photo documentation and focus group interviews.

BACKGROUND: People with dementia who live in ordinary housing need to perform activities outside the home such as visiting friends, talking walks and doing grocery shopping. This article identifies and examines characteristics that may influence accessibility in the space of a grocery shop as perceived by people with dementia. METHODS: This is a qualitative study with a grounded theory approach. The data collection was done with two different methods. It started with photo documentation and continued with focus group interviews in combination with photo elicitation. Data from both photo documentation and focus groups were analysed according to a grounded theory approach. RESULTS: The categories "illogical arrangement", "overload of products, information and people", "visual illusions" and "intrusive auditory stimuli" showed characteristics in the grocery shop that influenced how accessible and usable the informants experienced a shop to be. Furthermore, personal capacities in relation to the specific characteristics of the grocery shop space had an influence on how accessible and usable the informants experienced the grocery shop to be. Capacities to find, stay focused and concentrated, meet stress, remember, interpret and discriminate sensory impressions through hearing and sight came to the fore as important. CONCLUSIONS: Characteristics of both the shop and the person need to be taken into account when supporting people with dementia in grocery shopping.

Changing Epidemiology of Hypoplastic Left Heart Syndrome: Results of a National Swedish Cohort Study.

Background Norwood surgery provides a palliative surgical option for hypoplastic left heart syndrome and has been available in Sweden since 1993. The practice of prenatal ultrasound screening was gradually implemented in the same era, resulting in an increased prenatal detection rate. Our primary aims were to study changes in the incidence of live births, prenatal detection rate, and the termination of pregnancies over time. The secondary aims were to study the proportion of live-borns undergoing surgery and to identify factors that influenced whether surgery was or was not performed. Methods and Results Neonates with hypoplastic left heart syndrome with aortic atresia born 1990-2010 were identified through national databases, surgical files, and medical records. The fetal incidence was estimated from the period when prenatal screening was rudimentary. The study period was divided into the presurgical, early surgical, and late surgical periods. The incidence was calculated as the overall yearly incidence for each time period and sex separately. Factors influencing whether surgery was performed were analyzed using Cox-logistic regression. The incidence at live birth decreased from 15.4 to 8.4 per 100 000. The prenatal detection rate increased from 27% to 63%, and terminations increased from 19% to 56%. The odds of having surgery was higher in the late period and higher in the group with prenatal diagnosis. Conclusions We observed a decrease in incidence of live-borns with hypoplastic left heart syndrome aortic atresia. There was in increase in prenatal detection rate and an increase in termination of pregnancy. The proportion of live-borns who underwent surgery increased between time periods.

Awareness through interaction in everyday occupations: experiences of people with Alzheimer's disease.

The aim of this study was to explore and describe the characteristics of awareness of the consequences of having Alzheimer's disease on everyday life occupations. Six community-dwelling participants with Alzheimer's disease were interviewed on repeated occasions about their lived experiences of everyday occupations. A phenomenological method was adopted for the analysis. The findings show that the participants discovered and explored the changes in how they performed everyday occupations in the context of their social relations and through immediate reflections on their forgetfulness. They attempted to handle the changes by adapting their behaviour. Awareness of the changes in their lives was evident in their reflections, as they tried to make sense of what was happening to them. This seemed to be related to an elusive perception of change in situations that they found impossible to influence. The participants reflected on the impact their condition had on other people near them. Their reflections also involved emotional reactions to the shortcomings they experienced. In conclusion, the findings show how these people with Alzheimer's disease were able to express awareness of the consequences of their illness through their reflections on their experiences of interaction with the occupations and the social environment.

Assessing occupational performance in special housing in Sweden.

BACKGROUND: Assessing occupational performance is commonly done by occupational therapists [OTs] working in special housing in municipal elder care. Assessments should be relevant and evidence-based. Even so, we know little about how assessment of occupational performance is conducted in special housing. AIM: The aim of this study was to identify OTs' use and perceptions of different methods to assess occupational performance for elderly clients living in special housing. METHOD: An email questionnaire was sent to OTs working in special housing in Sweden. Data was analyzed using descriptive and parametric statistics. RESULTS: The findings, based on data from 660 respondents, showed that OTs regularly assessed occupational performance but did not use standardized assessment instruments or structured methods to any great extent. In general, OTs reported that they were not pleased with their ability to assess their clients; however, OTs with higher education and with responsibility for fewer clients were more pleased with their assessments and stated that they had more knowledge about assessment methods. CONCLUSIONS: To support OTs in using structured assessments of occupational performance in everyday practice, organization as well as structures in the work environment and educational development need to be taken into consideration.

Fetal and Neonatal Arrhythmias.

Cardiac arrhythmias are an important aspect of fetal and neonatal medicine. Premature complexes of atrial or ventricular origin are the main cause of an irregular heart rhythm. The finding is typically unrelated to an identifiable cause and no treatment is required. Tachyarrhythmia most commonly relates to supraventricular reentrant tachycardia, atrial flutter, and sinus tachycardia. Several antiarrhythmic agents are available for the perinatal treatment of tachyarrhythmias. Enduring bradycardia may result from sinus node dysfunction, complete heart block and nonconducted atrial bigeminy as the main arrhythmia mechanisms. The management and outcome of bradycardia depend on the underlying mechanism.

Being a pedestrian with dementia: A qualitative study using photo documentation and focus group interviews.

The aim of the study was to identify problematic situations in using zebra crossings. They were identified from photo documentations comprising film sequences and the perspectives of people with dementia. The aim was also to identify how they would understand, interpret and act in these problematic situations based on their previous experiences and linked to the film sequences.A qualitative grounded theory approach was used. Film sequences from five zebra crossings were analysed. The same film sequences were used as triggers in two focus group interviews with persons with dementia. Individual interviews with three informants were also performed.The core category, the hazard of meeting unfolding problematic traffic situations when only one layer at a time can be kept in focus, showed how a problematic situation as a whole consisted of different layers of problematic situations. The first category, adding layers of problematic traffic situations to each other, was characterized by the informants' creation of a problematic situation as a whole. The different layers were described in the subcategories of layout of streets and zebra crossings, weather conditions, vehicles and crowding of pedestrians. The second category, actions used to meet different layers of problematic traffic situations, was characterized by avoiding problematic situations, using traffic lights as reminders and security precautions, following the flow at the zebra crossing and being cautious pedestrians.In conclusion, as community-dwelling people with dementia commonly are pedestrians, it is important that health care professionals and caregivers take their experiences and management of problematic traffic situations into account when providing support.

Associations between performance of activities of daily living and everyday technology use among older adults with mild stage Alzheimer's disease or mild cognitive impairment.

BACKGROUND: The use of everyday technology (ET) is important for many activities in daily life (ADL) and can be especially challenging for older adults with cognitive impairments. OBJECTIVE: The aim was to explore associations between ADL performance and perceived ability to use ET among older adults with mild stage Alzheimer's disease (AD) and mild cognitive impairment (MCI). ADL motor and process ability, and ability to use ET were also compared between the groups. METHODS: Participants with AD (n = 39) and MCI (n = 28) were included. Associations and group differences were explored with non-parametric statistics. RESULTS: Significant correlations were found between ADL process ability and ET use in both groups (Rs = 0.44 and 0.32, p < 0.05), but for ADL motor ability and ET use, correlations were only found in the MCI group (Rs = 0.51, p < 0.01). The MCI group had significantly higher measures of ADL process ability (p < 0.001) and ET use (p < 0.05). CONCLUSION: ADL performance ability and perceived ability to use ET are important to consider in evaluations of older adults with cognitive impairments. Group differences indicate that measures of ADL performance ability and ET use are sensitive enough to discriminate the MCI group from the AD group with individually overlapping measures.

Managing critical incidents in grocery shopping by community-living people with Alzheimer's disease.

AIM: People with Alzheimer's disease (AD) remain in their ordinary housing and continue to use public space despite increasing disabilities. The aim of this study was to discover and describe problematic situations and critical incidents that took place when people with AD performed the ordinary outside-home activity of grocery shopping and how these were met by them. METHODS: Individual interviews (n = 12) and participant observations (n = 8) with six informants were performed and analysed using a grounded theory approach. RESULTS: The findings are presented in six categories and each category describes different critical incidents and actions used to meet these. The categories were: (a) Remembering to bring things when leaving home, (b) Finding the way to and from the grocery shop without getting lost, (c) Finding a way through traffic when not feeling safe, (d) Finding objects when organization is disrupted, (e) Choosing when a lot of objects and products are available, and (f) Finding a method to pay when payment opportunities are restricted. The core category, "A challenging and unstable process of meeting critical incidents in grocery shopping", was characterised by reflections and creativity to achieve relative harmony in each critical incident. CONCLUSIONS: In conclusion, it is important that relatives and professionals take into account relevant actions to help people with AD coordinate with their environment.

Occupational performance and awareness of disability in mild cognitive impairment or dementia.

Limited awareness of disabilities is common in mild cognitive impairment and dementia. In order to get a broader base in planning interventions, it is important to consider a person's awareness of his/her disability encountered in performance. The aim of this study was to examine the relationship between occupational performance and awareness of disability in older adults with mild cognitive impairment or dementia. Thirty-five older adults were evaluated with the AMPS (Assessment of Motor and Process Skills) and with the AAD (Assessment of Awareness of Disability). Many-faceted Rasch models generated individual measures of ADL performance and awareness of disability. Non-parametric correlation statistics were used to analyse the relationships. The findings showed that there was an overall positive relationship between occupational performance and awareness of disability. However, individual variations in the sample implied that limitations in performance were not equivalent to a limited awareness of disability. In conclusion, awareness of disability should be individually evaluated when planning interventions together with clients and their families.