AEPC PSYCHOSOCIAL CARE FROM FETUS TO ADULT WORKING GROUP
BIANNUAL MEETING
23-25 MARCH 2011
LAKE BALATON, HUNGARY
ABSTRACTS
COPING STRATEGIES OF PARENTS WITH CHILDREN WITH SEVERE CONGENITAL HEART DISEASE– FIRST DATAMarkova M.I, Angelova D. I., Kaneva-Nencheva A.I., Tzonzarova M.R.
Department of pediatric and pediatric cardiology, National Heart Hospital, Sofia, Bulgaria
Congenital heart diseases /CHD/ affect not only the child, but also the whole family system.
A project was developed in order: to determine different types of coping strategies that parents use when having a child with severe CHD; to provide trainings in order to gain helpful skills for an easier coping with the disease; to create a handbook for parents.
This study presents the first data from the research project. After interviewing the parents a special questionnaire was developed. It consists 5 main areas: demographic data and social, medical, family and psychological coping strategies. The target group are parents /mothers and/or fathers/ of the children with severe CHD, aged 3 years to 14 years and after their corrective or palliative heart operation. An SPSS statistical system was used to analyze the data.
The preliminary results show that parents accept, understand and present the stressful situation in a different way. They are using different types of coping mechanisms to deal with the stress. Mothers are more likely to use passive and emotional coping strategies, while fathers prefer more active and problem solving focused ones.
A training program and a handbook for parents have to be developed during the next stages of the project to give the parents a possibility to learn how to use new coping strategies and to be more flexible. / “The art of the heart”: Art therapy for hospitalised congenital heart disease patients
E. Quadri, E. Callus, M. Bedoni, S. Bonfanti, G. Campioni, M. Carminati, A. Giamberti, M. Chessa
Department of Pediatric Cardiology & Adult with Congenital Heart Defects, IRCCS Policlinico San Donato, Italy
Objectives: Congenital heart disease patients often have to undergo cardiac surgery and catheterisms. For this reason, we developed art therapy interventions in order to contain pre-interventional anxiety, fears and emotional stress. The study had two main objectives: (1) to assess whether patients and their parents perceive art therapy as being helpful during hospitalization and (2) to outline in which way art therapy is perceived as helpful.
Methods: The sample consisted of 20 patients with congenital heart disease (4-18 years of age). The following activities were proposed by the psychologist and the educator pre and post intervention; structured and free drawing and role-playing games in order to monitor and promote emotional expression.
Results and Conclusions: Most of the patients and their parents found the interventions as being helpful in the reduction of stress and anxiety, in the facilitation of emotional expression and of bodily perception and a sensation of empowerment when it comes to the condition. Art therapy seems to be useful to support patients during hospitalization; it is important to personalize the treatment in order to fulfil the patients’ different needs.
Nutrition and motor skill assessments in children with complex congenital heart disease
C. Brattström1, L. J. Söderberg2, I. Axelsson1, G. Björkhem1
1Children and Adolescent Hospital, Lund, 2Children and Adolescent Centre, Malmö 1&2Skåne University Hospital, Sweden.
Objectives
Evaluate nutrition and motor skill in children with complex congenital heart disease.
Methods
Ten years of data from a follow-up program with 69 children, 0-17 years, was classified by a dietician concerning need of extra nutrition and by a physiotherapist concerning motor skill assessment.
Results
In the age groups 0-2 years 93-97% of the children had moderate or large nutritional problems. In the group of children age 10-17 years 68% had no nutritional problems. In general, nutritional problems decreased with age (p<0,001, Spearman Rank Correlation).
In age groups 1-17 years 40-74% of children had no motor skill problems and 10-19% showed large motor skill problems. Moderate motor skill problems were most common in age groups up to three years (25-56%) but no correlation between age and frequency of motor skill problems was found (p>0.5, Spearman Rank Correlation).
Out of 31 children with assessments from five years of age, ten still had problems with both nutrition and motor skill, seven of these children had Hypoplastic left heart syndrome.
Conclusion
Nutrition problems are common in children with complex congenital heart disease. These problems decline over years but can still be present in adolescence. Motor skill problems are found at all ages but the majority of the children did not show such problems. It appears that some complex congenital heart defects can be more related to nutrition and motor skill problems than others. Our study illustrates the importance of follow-up of nutrition and motor skill at all ages in children with complex congenital heart disease, so appropriate interventions can be offered. / SWEDCON – The Swedish Registry of Congenital Heart Disease
Björkhem, G. and Thilén, U. Skåne University Hospital, Lund, Sweden
Objectives: To create a nationwide registry for children and adults with congenital heart disease in Sweden. Diagnoses, operations, interventions, hospital care, out-patient visits, examinations and quality of life are entered. The registry should provide information about long-time outcome for different cardiac malformations and results of treatment. The patients can be followed from birth to adult age and the quality of care in different parts of Sweden can be compared.
Methods: The new registry SWEDCON is based on the previous GUCH registry. It is web-based and data from the GUCH registry and local registries for pediatric cardiology were imported. Quality of life is registered for children using DISABKIDS and for adults using EQ-5D. Every hospital has access to its own data and can compare data to the whole country´s data but cannot see data from any other specific hospital.
Results: At the start in February 2009 SWEDCON included 21 387 imported patients, 6815 from the previous GUCH registry and the rest from the regional pediatric registries. 1500 patients were present both in the pediatric and the GUCH parts of the registry. After the first 2 years the registry is now routinely used by the 7 major GUCH centers and the 4 major pediatric cardiac centers including the 2 operating centers in the country. The registry is also used by 24 regional hospitals with pediatric cardiology units and this number is increasing rapidly. A total of 18 844 out-patient visits have been registered in SWEDCON since the start.
Conclusions: SWEDCON now covers all congenital cardiac surgery and all specialized GUCH and pediatric cardiology units in Sweden. It also covers most local pediatric cardiology clinics. Major success-factors have been the joint creation of the registry and the easy availability of data for each separate hospital.
Assessment of quality of life (QoL) in children with heart disease in a national registry
Birgitta Svensson, RN and Gudrun Björkhem, MD, PhD, Department of Pediatric Cardiology, Skåne University Hospital, Lund, Sweden
Background: SWEDCON is a Swedish national registry for children and adults with congenital heart disease in use since 2009. All major pediatric cardiac centers participate and most of the smaller, a total of 28 units. Recently evaluation of QoL for children has been added, based on physical, cognitive, and psychosocial performance and on the DISABKIDS self estimate questionnaire (short version). Registrations are done twice, at ages 9-11 years and 14-17 years.
The aim of this work is to describe how assessment of QoL has been introduced at the registering units and to present some preliminary data.
Method: QoL data from the SWEDCON has been analyzed. In addition, some data from our own department has been analyzed in more detail.
Results: 7/28 units have started to register QoL. The registrations are usually done by the nurse at the out-patients clinics. 413 children have been evaluated in Sweden. 273 of these registrations were done at our unit, 33% in the age group 9-11 years and 67% in the group 14-17 years.
DISABKIDS gives the result as a percentile compared to children of the same age with chronic disease. The mean percentile for all studied children was 75, while it was 61 for children with univentricular heart. 39 individuals out of 278 needed professional support (psychologist, physical therapist, dietician, occupational therapist). Psychologist support was most needed. Extra sports was also studied and 139/278 performed >3 hours of extra sports per week including 7/15 children with univentricular heart.
Conclusions: QoL registration has been easily integrated in the daily clinical work in our out-patient’s clinic and the number of participating clinics is increasing.
Preliminary results from DISABKIDS indicate a fairly good QoL for cardiac children. In the future the SWEDCON registry will provide more QoL data for different diagnostic groups and changes over time. / Pre-operative psychological wellbeing in grown-up congenital heart disease patients
E. Callus, E. Quadri, C. Ricci, M. Carminati, A. Frigiola, A. Giamberti,M. Chessa
Department of Pediatric Cardiology & Adult with Congenital Heart Defect, IRCCS Policlinico San Donato, Via Morandi, 30, 20097 San Donato M.se, Milan, Italy
Objectives: The objective of this study was to investigate if specific cardiac conditions and patient disease severity evaluations are related to psychological wellbeing and illness behavior during the pre-operative period.
Methods: 115 patients (52 male, 16-73 years old) with congenital heart disease evaluated the severity of their condition, using a numerical rating scale ranging from 0 = least to 100 = most severe condition. Psychological wellbeing was assessed with the Psychological General Wellbeing Index (total score of < 60 indicating severe distress) and illness behavior with the Illness Behavior Questionnaire.
Results: Pre-operative psychological wellbeing was not found to be related to both objectively evaluated medical parameters regarding the condition and also subjective patient disease severity evaluation. Psychological scores were similar to reference values from the Italian population except for the Denial and Hypochondria score from the IBQ questionnaire, Hypochondria being related to the patient’s education.
Conclusions: This study outlines the importance of assessing the patients’ preoperative psychological state independently of the severity of their condition. Targeted educational interventions regarding the cardiac condition are recommended especially in patients with lower education. The role of denial in this population, needs to be further investigated.
Home Audiovisual Monitoring – A new way to support families of children with congenital heart disease
Catherine Michaelides, Rosie Browne, Brian McCrossan†, Gareth Morgan†, Brian Grant†, Andrew Sands†, Brian Craig†, Nichola Doherty‡, & Frank Casey†
† Department of Paediatric Cardiology, Royal Belfast Hospital for Sick Children, Belfast, Northern Ireland, UK.
‡ Department of Clinical Psychology, Royal Belfast Hospital for Sick Children, Belfast, Northern Ireland, UK.
Aims: Paediatric cardiology is a highly centralised subspecialty with patients living often living large distances from the tertiary care centre. A tele homecare programme for infants with major congenital heart disease (CHD) was devised to support patients and families during the stressful and vulnerable period following discharge from hospital. This study aimed to assess the sustainability, clinical utility and acceptability to clinicians and parents of the tele homecare programme. Most importantly, this study aimed to assess the impact on health service utilisation.
Methods & Results: Over 41 months, 83 infants with major CHD were randomised to one of three groups: videoconferencing support (n=35), telephone support (n=24) and a control group (n=24). Patients in the two intervention groups received regular, standardised remote consultations. Videoconferences were facilitated by Integrated Systems Digital Network lines and replaced by home broadband connections later in the study. Clinicians were more confident making medical decisions following videoconferences compared with telephone consultations (p = 0.01). Both videoconference and telephone support were very well received but parents expressed significantly higher levels of satisfaction with videoconference support (p=0.001). Parental anxiety was addressed more effectively in the video group compared with the telephone group (Anxiety score reduction = 6.1 vs 2.7, p <0.001). Health service utilisation was 37% lower in the videoconferencing group compared with both telephone support and control groups (p<0.001) as was the risk of hospitalisation (p=0.006).
Conclusions: A telemedicine home support programme for families of infants with major CHD is feasible, sustainable and effective. Home support with videoconferencing is superior to telephone consultations. Parents are highly satisfied with tele-homecare. Tele-homecare significantly reduces parental anxiety, health service utilisation and, in particular, risk of hospital admission. Tele-homecare is now established as a nurse led service and has become an integral part of our outpatient care. / The creation of a national peer to peer group support system for adults with congenital heart disease in Italy
E. Callus, E. Quadri, G. Campioni, S. Savini, D. Lucarini, M. Bedoni, M. Carminati, A. Giamberti, M. Chessa
Department of Pediatric Cardiology & Adult with Congenital Heart Defects, IRCCS Policlinico San Donato, Italy
Objectives: To set up a national support system network for adults with congenital heart disease in the following branches: Lombardy, Sardinia, Calabria, Puglia, and Sicily.
Methods: Focus groups will be conducted in order to determine the necessities of the patients in each Italian region in order to create an optimal start-up of the groups and to decide how and when they will take place. The focus groups will be recorded, transcribed and analysed using Grounded Theory procedures.
Results & Conclusions: The first focus group has been held in Lombardy, the group has decided to meet once every two months in this phase. The considerations which emerged will be utilised in the successive focus groups.
Psychosocial impact of implantable cardioverter defibrillators (ICD) in young adults with Tetralogy of Fallot
Petra Opić1, Elisabeth M.W.J. Utens2, Philip Moons3, Dominic A.M.J Theuns1, Arie P.J. van Dijk4, Elke S. Hoendermis5, Hubert W. Vliegen6, Natasja M.S. de Groot1 Maarten Witsenburg1, Martin Schalij6, Jolien W. Roos-Hesselink1
1Department of Cardiology, Thoraxcenter, Erasmus Medical Center, Rotterdam, The Netherlands;
2Department of Child and Adolescent Psychiatry, Erasmus Medical Center- Sophia Children’s Hospital, Rotterdam, The Netherlands;
3Center for Health Services and Nursing Research, Katholieke Universiteit Leuven, Leuven, Belgium;
4Department of Cardiology, University Medical Center Nijmegen, Nijmegen, The Netherlands;
5Department of Cardiology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands;