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A correct picture drawn by Allan, aged 14 years, diagnosed with bicuspid aortic valve, completed at home.
Source publication
Following advances in overall management and improved outcomes, an increasing number of adolescents with cardiac disease are reaching adult age. Patients in general, including adolescents, seem to have a poor knowledge of their illness, which may further reflect in a less optimal quality of life. As a guide to their knowledge of their cardiac condi...
Contexts in source publication
Context 1
... 60 (50%) of the patients completed the drawing, of whom one-third did so at the time of attendance. Only three patients, all completed at home, drew an accurate diagram (Figs 1-3). A further nine patients, four completed at home, drew a reasonably correct diagram (Figs 4-6), 13 patients, nine at home, only a partially correct diagram (Figs 7-9), whereas 35 patients, 24 at home, submitted incorrect diagrams (Figs 10-12). ...
Context 2
... three patients, all completed at home, drew an accurate diagram (Figs 1-3). A further nine patients, four completed at home, drew a reasonably correct diagram (Figs 4-6), 13 patients, nine at home, only a partially correct diagram (Figs 7-9), whereas 35 patients, 24 at home, submitted incorrect diagrams (Figs 10-12). There was no significant difference in the accuracy of the adolescents' drawing between adolescents who completed at home or at the clinic. ...
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Citations
... 7 Of these, disease-related knowledge has ben evaluated in numerous studies, with CHD/ACHD patients shown to have limited knowledge. 8 Furthermore, previous studies showed that disease-related knowledge can be improved by transitional care programs. [9][10][11][12] In all these studies, patients' disease-related knowledge was evaluated objectively. ...
Background:Disease understanding in patients with congenital heart disease is important in transitional and lifelong care. This study aimed to develop the Japanese version of the Leuven Knowledge Questionnaire for Congenital Heart Disease (LKQCHD) and identify factors associated with disease-related knowledge.
Methods and Results:After confirming the content and face validity of the scale, a questionnaire including the LKQCHD was distributed to 59 eligible patients aged >16 years attending a university hospital. For the 58 participants who responded (30 males, 28 females; median age 22 years), the mean (±SD) LKQCHD total score was 53.7±15.4, with mean (±SD) scores for each domain as follows: Disease and Treatment, 68.3±19.7; Preventing Complications, 45.8±19.0; Physical Activity, 74.1±34.1; Sex and Heredity, 37.9±35.4; and Contraception and Pregnancy, 40.2±29.1. Regarding known-groups validity, we found a positive correlation between the LKQCHD score and age (ρ=0.268, P=0.042), and a significantly low LKQCHD score in the moderate/severe disease group (η²=0.131, P=0.021). Regarding convergent validity, the LKQCHD score was positively correlated with the total and subscale scores of the Resilience Assessment Tool (r=0.213 [P=0.109] andr=0.405 [P=0.002], respectively).
Conclusions:We confirmed the validity of the Japanese version of the LKQCHD, concluding that patient education regarding long-term complications, prevention methods, heredity, pregnancy, and childbirth is needed.
... Similarly, in patients with acromegaly, distorted drawings of the right hand were associated with clinicians' morphometric scores (Imran et al., 2016). Greater accuracy was associated with more knowledgeable written descriptions of cardiac abnormalities by children (Wang, Hay, Clarke, & Menahem, 2011). Written explanations were associated with higher concern, lower control, and fewer illness episodes in patients with lupus (Daleboudt et al., 2011). ...
Recent research has examined patients’ drawings of their illness as a means to identify patients’ illness representations. The aim of this systematic review was to examine which representations are evident in patients’ drawings, and whether drawing assessments are associated with patient outcomes. Ten electronic databases were searched for published journal papers in English up to July 1 2017. Narrative synthesis summarized findings by participant characteristics, study design, illness representations, and associations with outcomes. There were 101 eligible studies, published across 29 different countries, with 27 different disease categories; 54 of the studies were with adults and 80 were cross-sectional. All core illness perception domains were evident; the most common being identity and related concepts (including symptoms, anatomy, pathophysiology), and emotional representations (including fear, denial, stigma). Perceptions of treatment and the clinical and social environment were evident. More organ damage drawn and larger drawing size were associated with worse perceptions and health outcomes, and drawings distinguished between patient groups. Limitations include the inability to conduct meta-analysis. In conclusion, patients’ drawings reveal additional domains of illness representations, specifically perceptions of pathophysiology, treatment and social environments, as well as illness pre-occupation. These findings expand theories of self-regulation and suggest image-based intervention strategies.
... Na ausência de peças anatômicas adequadas, o estudo da anatomia cardíaca é extremamente dependente de representações artísticas em duas e três dimensões, como desenhos e gráficos, além de imagens ecocardiográficas, tomográficas, etc. 4 . Além desses usos, é estudado o impacto de intervenções artísticas no tratamento de pacientes com cardiopatia, sobretudo crianças e adolescentes [5][6][7] . ...
RESUMO INTRODUÇÃO A anatomia e a fisiologia do coração humano há muito tempo despertam curiosidade, dada a complexidade da morfologia cardíaca, a sua importância para a manutenção da vida e seu grande valor simbólico. O entendimento da fisiologia cardíaca e sua representação nas diversas modalidades artísticas têm ajudado até hoje na formação de profissionais de saúde que trabalham com cardiologia e também na comunicação com familiares. Este artigo apresenta a experiência de um especializando em um serviço de referência no ensino de cardiologia pediátrica, na construção de modelos de corações normais e patológicos em massa de modelar e massa de biscuit, e as implicações no processo de ensino-aprendizagem do grupo de preceptores e residentes da instituição. RELATO DE EXPERIÊNCIA Um residente do primeiro ano de cardiologia pediátrica, sem treinamento ou experiência prévia com artes plásticas, foi estimulado pela preceptoria do programa a moldar corações normais e com cardiopatias congênitas para fins de aprendizado da anatomia interna e externa do órgão. Os materiais utilizados foram massa de modelar e massa de biscuit. RESULTADOS Dez peças foram produzidas ao longo de um ano de especialização, com melhora progressiva nos aspectos artísticos e anatômicos. Entre os modelos patológicos, foram produzidas peças representativas de tetralogia de Fallot, transposição dos grandes vasos, persistência do canal arterial e comunicação interventricular. CONCLUSÃO A experiência proporcionou três efeitos positivos constatados pela equipe: maior entendimento da anatomia cardíaca normal e patológica por parte do especializando envolvido, o qual se refletiu, por exemplo, em melhor compreensão de imagens médicas, como ecocardiografia, tomografia computadorizada e ressonância magnética cardíacas, maior aproximação dos residentes do programa com as artes plásticas em uma especialidade que sempre teve uma relação muito estreita com o desenho e a escultura, e produção de modelos em três dimensões de estruturas normais e patológicas que podem ser usadas em aulas e encontros científicos para discussão da disciplina.
... 37,39,40 Previous studies on patients' drawings in which drawing characteristics were scored were identified by a PubMed search (March 20, 2015) and resulted in 18 studies (Table I). 2,37,[40][41][42][43][44][45][46][47][48][49][50][51][52][53][54][55] These studies demonstrate that drawings made by patients reveal their perceptions on their illness. Furthermore, positive patient perceptions of their medical condition represented in their drawing were found to be related to faster recovery, earlier return to work, and a higher QoL. ...
Objectives/hypothesis:
Drawings made by patients are an innovative way to assess the perceptions of patients on their illness. The objective of this study, at a university tertiary referral center, on patients who have recently been diagnosed with vestibular schwannoma, was to examine whether patients' illness perceptions can be assessed by drawings and are related to their quality of life.
Study design:
Cross-sectional study.
Methods:
Patients diagnosed with vestibular schwannoma (mean age [range], 55.4 [17-85] years) between April 2011 and October 2012 were included (N = 253). Sociodemographics, illness perceptions (Brief Illness Perception Questionnaire [B-IPQ]), and disease-specific quality of life (Penn Acoustic Neuroma Quality of Life [PANQOL] scale) were assessed to evaluate the impact of being diagnosed with vestibular schwannoma. Furthermore, patients' drawings of their tumor were analyzed to explore the association between illness perceptions, drawings, and quality of life.
Results:
Comparison of the B-IPQ scores of the current sample (N = 139; response rate 54.9%) with other disease samples shows a significantly lower score for patients with vestibular schwannoma on the Coherence dimension, indicating a low understanding of the illness. Illustration of emotions (N = 12) in the drawings gave a negative association with quality of life. Intercorrelations indicate a positive association between a low amount of physical and emotional consequences of the illness and a higher score on the Balance, Hearing, and Energy dimensions of the PANQOL.
Conclusions:
Patients' drawings give an insight into their perception of the tumor inside their head. Use of drawings may be helpful when developing and offering self-management programs. Quality of life appears to be significantly affected by the diagnosis.
Level of evidence:
4 Laryngoscope, 2015.
... In line with previous reports, our study showed that young people with CHD generally possess poor knowledge of their condition prior to education. 11,[25][26][27][28][29] Our results also confirm poor-to-moderate levels of understanding of the diagnosis, alarming symptoms, cardiovascular risk factors, reproductive issues, and possible preventive measures against infective endocarditis, as previously reported in a comparable but smaller sample of young people who were not exposed to an educational program. 22 Before exposure to the educational session, the prevalence of health-compromising behaviors in our sample was low. ...
... 19 To establish a heart-healthy lifestyle, young people with CHD are assumed to have a good understanding of their heart condition, treatment and preventive measures. 20,21 Studies, however, found that patients have poor to moderate understanding of their heart condition, [22][23][24][25][26][27][28][29] hereditariness of CHD, 2,30 reproductive issues, 23,24 safe levels of physical activity 23,24,31 and aspects of self-care activities preventing endocarditis. 23,26,27,29,32 The level of knowledge concerning the treatment regimen varied from poor to adequate. ...
... When comparing our results to previous research, it was apparent that for three out of the eight thematic subscales -knowledge of CHD diagnosis, symptoms of deterioration and follow-up -previous studies consistently reported similarly low knowledge levels. [22][23][24][25][26][27][28][29] However, for the five other thematic subscales, prior research reported variable study results, 23,24,26,27,29,31 particularly due to a large variability in the research aims, age ranges of included subjects and assessment tools across the studies. These overall suboptimal knowledge levels may reflect the consequences of the current health care system in which only 0.9% of the healthcare budget is invested in preventive care. ...
Background: In order to prevent cardiac complications, young people with congenital heart disease (CHD) should conduct heart-healthy behaviours. Therefore, they are assumed to have a good understanding of their disease. However, empirical data on the relationship between disease-related knowledge and health behaviours in this population is lacking.
Aims: This study aimed (a) to describe the health risk behaviours of young people with CHD; (b) to describe their level of disease-related knowledge; and (c) to explore the relationship between the level of disease-related knowledge and health risk behaviours.
Methods: Data were collected in 429 young people with CHD. Health risk behaviours were assessed using the Health Behaviour Scale for CHD and the Baecke questionnaire. Disease-related knowledge was evaluated using the Leuven Knowledge Questionnaire for CHD. An overall health behaviour risk score, a total knowledge score and eight thematic knowledge subscale scores were calculated. Eight relationships between knowledge and health risk behaviours were tested.
Results: Patients presented moderate to good overall health behaviour. Disease-related knowledge was found to be relatively poor. Furthermore, better understanding of endocarditis was significantly associated with the performance of annual dental visits.
Conclusions: This study was the first to explore the relationship between disease-related knowledge and health risk behaviours in young people with CHD. Little evidence, however, was found to support this relationship. Additional studies are needed to evaluate the effectiveness of other strategies altering the health- ompromising behaviours of these patients.
... [13][14][15] Similar concerns were raised in a study done on adult patients with congenital heart disease. 16 Drawings have been widely used in both adult 17 and pediatric health research 18,19 and are considered one way to obtain further information as to how older children and adolescents understand their cardiac anomaly. This study aimed to determine how a Correspondence: Samuel Menahem, Emeritus Head, Paediatric Cardiology Unit, Monash Medical Centre, 246 Clayton Road, Clayton, Victoria 3168, Australia. ...
... A subsequent study of a larger cohort of adolescents with congenital heart disease also found that the participants had little knowledge of their cardiac abnormality despite many having had surgery. 19 That was further evidenced in their drawings, which bore little resemblance to their cardiac abnormality, 19 a finding also noted by Veldtman et al. 24 ...
... A subsequent study of a larger cohort of adolescents with congenital heart disease also found that the participants had little knowledge of their cardiac abnormality despite many having had surgery. 19 That was further evidenced in their drawings, which bore little resemblance to their cardiac abnormality, 19 a finding also noted by Veldtman et al. 24 ...
Congenital heart disease is common yet poorly understood in childhood. We reviewed the understanding of older children and adolescents with the commonest congenital heart defect, namely, a small ventricular septal defect (VSD), through a questionnaire and/or their drawings of their abnormality.
As part of a wider study, older children and adolescents with a small VSD were asked to draw a picture of their cardiac defect in addition to completing a questionnaire.
Twelve of an initial cohort of 20 participants, who were between the ages of 8 and 20 years, completed a drawing of their malformation. Further drawings were obtained from five additional participants recruited from a private practice over the next few years. There were almost equal number of male and female participants overall. Nearly all participants had a limited understanding of their cardiac abnormality as reflected by their drawings. Nevertheless none reported restricting their physical activity.
While most older children and adolescents did not seem to have a clear understanding of their small VSD, it did not appear to affect their daily activity. The participants placed a greater reliance on the information provided by their parents rather than their doctor, emphasizing the importance of informing both the parents and the patient.
Background
Patients with congenital heart disease are a chronically ill population. Knowledge of the disease is a key factor in promoting an appropriate attitude towards health. The aim of this study is to evaluate the understanding of heart involvement by describing the heart disease and drawing a picture of the heart by patients and parents.
Methods
Descriptive cross-sectional study over an 8-month period in a tertiary pediatric cardiology center, involving 201 parents and 123 patients, of whom 74 were between 8 and 14 years old and 49 were older than 14 years old. A questionnaire was used in which they had to name and describe the disease, and where a blank box was included in which they were asked to draw their congenital heart disease.
Results
68.8% of the patients correctly named their heart disease, however only 32.4% described it adequately and only 3.5% drew a correct picture of it. Divided by age groups, of the patients between 8 and 14 years old 45.9% named their cardiopathy correctly, 28.2% described it adequately and 4.1% drew a correct picture of it. Of those over 14 years of age, 83.6% correctly named their cardiopathy, 26.5% knew how to describe it and only 2% managed to draw it properly. In the group of parents, 79.1% correctly named their child's congenital heart disease, 45.8% described it adequately and only 3.5% drew a correct picture (p value 0.55).
Conclusions
Most parents and patients with congenital heart disease are unaware of fundamental aspects of their heart disease. An effort should be made by the professionals to try to explain congenital heart disease in an illustrative way, in order to achieve a better understanding of the disease and thus optimize the behavior in terms of health.
Aim:
To examine how children with sleep-disordered breathing express their own sleep through drawing.
Methods:
Children hospitalised for a sleep study in a sleep laboratory of a tertiary hospital were asked to draw a human figure and themselves while asleep. Characteristics of the two drawings were analysed and compared along with a descriptive analysis of some drawings.
Results:
Children with sleep-disordered breathing and an associated disorder, n=34, age 5 to 11 years, participated to the study. The size of the human figure, the colours used, the orientation of the sheet, the type of drawing strokes, and the objective quality of the drawing were comparable between the two drawings. On the sleep drawing, 71% of the children drew a bed, 15% drew themselves asleep, 19% represented snoring, and 12% night elements. Sixty two percent of the children preferred the human drawing to the sleep drawing. A descriptive analysis of 12 drawings showed the influence of the associated disorder on the two drawings.
Conclusion:
This study showed how the associated disease of children with sleep-disordered breathing infiltrated their imaginary life. The sleep drawing gave useful information about representation, fears and wishes in relation to the associated disease and the child's sleeping.
