Hsiao-Ling Yang

Measuring knowledge of patients with congenital heart disease and their parents: validity of the ‘Leuven Knowledge Questionnaire for Congenital Heart Disease’

Background: Patients with congenital heart disease (CHD) and their parents need to have sufficient knowledge on their condition, treatment, medication, and preventive measures. The Leuven Knowledge Questionnaire for Congenital Heart Disease (LKQCHD) was developed to comprehensively measure the level of knowledge in patients with CHD. Aims: This study aimed to translate the LKQCHD into Chinese and to test its validity to be used in patients with CHD and their parents. Method: Questionnaire translation was guided by a three-step linguistic validation method. Evidence based on test content and on relation with other variables was obtained. For test content, we included five experts in CHD and research methods. Furthermore, the instrument was tested in 89 pairs of adolescents with CHD and their parents. Results: We found a high item-level content validity index (>0.78 in all except two items), high scale-level content validity index (>0.90), high free-marginal multirater Kappa (>0.75), and low average proportion of missing values (0.49% in adolescents; 0.51% in parents), showing an excellent content validity. The hypothesized positive correlations between parental knowledge and parental educational level and between patient’s knowledge and patient’s age, as well as the hypothesis that parents have more knowledge than their children, were confirmed. This provides validity evidence based on relation with other variables. Conclusions: The Chinese version of the LKQCHD is valid to assess the level of knowledge in patients with CHD and their parents.

An evaluation of disease knowledge in dyads of parents and their adolescent children with congenital heart disease.

Background:Congenital heart disease (CGHD) can be considered a chronic disease for many patients. To adopt a healthy lifestyle and to avoid complications, patients with CGHD and their parents need to have good knowledge of the heart defect and its consequences. Objective:The aims of this study were to evaluate patient and parental knowledge of CGHD and to explore the related factors of their respective disease knowledge. Methods:This study included 116 dyads of adolescents with CGHD (43.1% male adolescents; aged 12–18 years) and one of their parents (79.3% mothers; median age, 46 years). All participants completed the Leuven Knowledge Questionnaire for Congenital Heart Disease, and then we calculated a correct rate score to determine the overall disease knowledge of the respondents. Results:The correct rate score was 38.8% for adolescents with CGHD and 51.4% for parents (t = 7.69; P < .001). The only determinant of knowledge in parents was their educational level (standardized estimate = 6.160, P < .001). In adolescents, knowledge was determined by age (standardized estimate = 2.242, P = .002) and parental knowledge (standardized estimate = 0.311, P < .001). Conclusions:Although parents have significantly greater disease knowledge than their children do, the level of knowledge in both parents and adolescents is suboptimal. Because parents’ knowledge influenced their adolescents’ knowledge, educational interventions should target both adolescent patients and parents. Transition programs can play a pivotal role in this respect.

Physical self-concept and its link to cardiopulmonary exercise tolerance among adolescents with mild congenital heart disease

Background: Due to medical advances, most children with congenital heart disease (CHD) are expected to survive into adulthood. Establishing adequate physical self-concept and cardiopulmonary tolerance during the adolescent period can primarily enhance overall well-being. Aim: The purpose of this study was to undertake a gender-specific evaluation of the domain of physical self-concept among adolescents with mild CHD, and to examine the relationships between physical self-concept and cardiopulmonary exercise tolerance among adolescents with mild CHD. Methods: Four hundred and thirteen adolescents 12–20 years of age, whose cardiologists had not recommended any limitation of exercise, completed Physical Self-Description Questionnaires and three-minute step tests in two outpatient cardiology departments. Results: The male participants had significantly greater scores in measures of overall physical self-concept, competence in sports, physical appearance, body fat, physical activity, endurance, and strength than did the female participants. More than 80% of the participants had at least an average cardiopulmonary exercise tolerance index. The perception of not being ‘too fat’ and being more physically active were significant correlates of better cardiopulmonary exercise tolerance for adolescents with mild CHD. Conclusions: The results provided evidence for gender-specific evaluation of domains of physical self-concept among adolescents with mild CHD. The three-minute step test to measure cardiopulmonary exercise tolerance in adolescents with mild CHD may be an appropriate objective measure for use in future research. Continued efforts are needed in early intervention to promote cardiopulmonary exercise tolerance.

The use of complementary and alternative medicine for patients with traumatic brain injury in Taiwan.

BackgroundThe use of complementary and alternative medicine (CAM) continues to increase in Taiwan. This study examined the use of CAM and beliefs about CAM as expressed by patients with traumatic brain injury (TBI) in Taiwan.MethodsTBI patients and their accompanying relatives were interviewed by using a structured questionnaire at an outpatient clinic in a medical center in northern Taiwan.ResultsA total of 101 patients with TBI participated in the study. Sixty-four (63%) patients had used at least one form of CAM after sustaining TBI. CAM users had used an average of 2.72 forms of CAM after sustaining TBI. The most frequently used CAM category was traditional Chinese medicine (37; 57.8%), followed by folk and religious therapies (30; 46.9%), and dietary supplements (30; 46.9%). The majority of the patients (45; 70.3%) did not report CAM use because they felt it was unnecessary to do so. Patients who used CAM had a significantly stronger positive belief in CAM than those who did not (t = −2.72; P = .008). After using CAM, most of the patients (54; 85%) perceived moderate satisfaction (2.89 ± 0.44), according to a 4-point Likert scale.ConclusionAlthough the use of CAM is common for TBI patients receiving conventional medical health care in Taiwan, most patients did not inform health care personnel about their CAM use. TBI patients perceive combined use of CAM and conventional medicine as beneficial for their overall health.

Patient-reported outcomes in adults with congenital heart disease: Inter-country variation, standard of living and healthcare system factors

AIMSnGeographical differences in patient-reported outcomes (PROs) of adults with congenital heart disease (ConHD) have been observed, but are poorly understood. We aimed to: (1) investigate inter-country variation in PROs in adults with ConHD; (2) identify patient-related predictors of PROs; and (3) explore standard of living and healthcare system characteristics as predictors of PROs.nnnMETHODS AND RESULTSnAssessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS) was a cross-sectional, observational study, in which 4028 patients from 15 countries in 5 continents were enrolled. Self-report questionnaires were administered: patient-reported health (12-item Short Form Health Survey; EuroQOL-5D Visual Analog Scale); psychological functioning (Hospital Anxiety and Depression Scale); health behaviors (Health Behavior Scale-Congenital Heart Disease) and quality of life (Linear Analog Scale for quality of life; Satisfaction With Life Scale). A composite PRO score was calculated. Standard of living was expressed as Gross Domestic Product per capita and Human Development Index. Healthcare systems were operationalized as the total health expenditure per capita and the overall health system performance. Substantial inter-country variation in PROs was observed, with Switzerland having the highest composite PRO score (81.0) and India the lowest (71.3). Functional class, age, and unemployment status were patient-related factors that independently and consistently predicted PROs. Standard of living and healthcare system characteristics predicted PROs above and beyond patient characteristics.nnnCONCLUSIONSnThis international collaboration allowed us to determine that PROs in ConHD vary as a function of patient-related factors as well as the countries in which patients live.

Trend Analysis of Nursing Intervention Studies Published by Taiwan Nurses Association between 1954 and 2006

This study reviewed historical nursing intervention studies in Taiwan and analyzed results based on sample characteristics, methodology characteristics, and content characteristics. Historical studies were split into four groups, G1970, G1980, G1990, and G2000, based on the decade in which they were published. A comparison was then made to identify significant differences between G2000 and other groups. A total of 103 nursing intervention studies were analyzed in this study. Results included sample characteristics of studies conducted primarily by single-disciplinary research teams, although multidisciplinary studies showed a growth trend across decades, with the number of multidisciplinary studies significantly greater in G2000 than in other decades. Nursing practice was the main area of research, clients were the major participants studied, and hospitals provided the principal research setting. No statistical difference was noted in the above mentioned variables. In terms of methodology characteristics, questionnaires were used most frequently to collect data. A quasi-experimental design was the primary research design employed. Although the number of experimental designs has increased significantly in recent years, most studies specified their inclusion criteria. Reliability and validity of instruments were more clearly specified in recent decade groups than in earlier decade groups. Methodology rigor has improved in recent years, achieving a statistically significant difference between G2000 and other groups in all categories, with the exception of instrument validity. In terms of content characteristics, health education was the leading intervention type. Most interventions were categorized as tertiary prevention, with perceptual outcome used most often as the outcome indicator. However, no statistical differences in content dimension variables were identified between G2000 and other groups. In summary, the number of nursing intervention research cases has risen, and research methodology rigor has improved in recent decades. However, no statistically significant differences in sample characteristics and content characteristics between the most recent and earlier decade groups were found. Suggestions for future domestic nursing intervention studies based on study findings are made at the conclusion of this article.

A positive perspective of knowledge, attitude, and practices for health-promoting behaviors of adolescents with congenital heart disease

Background: Health-promoting behaviors could serve as a major strategy to optimize long-term outcomes for adolescents with congenital heart disease. The associations assessed from a positive perspective of knowledge, attitudes, and practice model would potentially cultivate health-promoting behaviors during adolescence. Aim: The purpose of this study was to examine the relationships between disease knowledge, resilience, family functioning, and health-promoting behaviors in adolescents with congenital heart disease. Methods: A total of 320 adolescents with congenital heart disease who were aged 12–18 years were recruited from pediatric cardiology outpatient departments, and participated in a cross-sectional survey. The participants completed the Leuven Knowledge Questionnaire for Congenital Heart Disease; Haase Adolescent Resilience in Illness Scale; Family Adaptability, Partnership, Growth, Affection, and Resolve; and Adolescent Health Promotion scales. The collected data were analyzed using descriptive statistics and three multiple regression models. Results: Greater knowledge of prevention of complications and higher resilience had a more powerful effect in enhancing health-promoting behaviors. Having symptoms and moderate or severe family dysfunction were significantly more negatively predictive of health-promoting behaviors than not having symptoms and positive family function. The third model explained 40% of the variance in engaging in health-promoting behaviors among adolescents with congenital heart disease. Conclusion: The findings of this study provide new insights into the role of disease knowledge, resilience, and family functioning in the health-promoting behavior of adolescents with congenital heart disease. Continued efforts are required to plan family care programs that promote the acquisition of sufficient disease knowledge and the development of resilience for adolescents with congenital heart disease.

A multinational observational investigation of illness perceptions and quality of life among patients with a Fontan circulation

OBJECTIVEnFirst, to compare QOL and illness perceptions between patients with a Fontan circulation and patients with anatomically simple defects (ie, atrial septal defects [ASD] or ventricular septal defects [VSD]). Second, to explore illness perceptions as a mediator of the association between congenital heart disease (CHD) diagnosis and QOL.nnnDESIGNnCross-sectional observational study.nnnSETTINGnTwenty-four cardiology centers from 15 countries across five continents.nnnPATIENTSnFour hundred thirty-five adult patients with congenital heart disease (177 Fontan and 258 ASD/VSD) ages 18-83 years.nnnOUTCOME MEASURESnQOL and illness perceptions were assessed by the Satisfaction With Life Scale and the Brief Illness Perceptions Questionnaire, respectively.nnnRESULTSnPatients with a Fontan circulation reported lower QOL (Wald Z = -3.59, pu2009=u2009<.001) and more negative perceptions of their CHD (Wald Zu2009=u2009-7.66, pu2009<u2009.001) compared with patients with ASD/VSD. After controlling for demographics, anxiety, depressive symptoms, and New York Heart Association functional class, path analyses revealed a significant mediation model, αβu2009=u20090.15, pu2009=u2009.002, 95% CIu2009=u20090.06-0.25, such that CHD diagnosis was indirectly related to QOL through illness perceptions.nnnCONCLUSIONSnThe Fontan samples more negative perceptions of CHD were likely a reflection of life with a more complex defect. Illness perceptions appear to account for unique differences in QOL between groups of varying CHD complexity. Psychosocial screening and interventions may be important treatment components for patients with CHD, particularly those with Fontan circulations.

Religion and spirituality as predictors of patient-reported outcomes in adults with congenital heart disease around the globe

AIMSnReligion and spirituality can be resources for internal strength and resilience, and may assist with managing lifes challenges. Prior studies have been undertaken primarily in countries with high proportions of religious/spiritual people. We investigated (i) whether being religious/spiritual is an independent predictor of patient-reported outcomes (PROs) in a large international sample of adults with congenital heart disease, (ii) whether the individual level of importance of religion/spirituality is an independent predictor for PROs, and (iii) if these relationships are moderated by the degree to which the respective countries are religious or secular.nnnMETHODS AND RESULTSnAPPROACH-IS was a cross-sectional study, in which 4028 patients from 15 countries were enrolled. Patients completed questionnaires to measure perceived health status; psychological functioning; health behaviors; and quality of life. Religion/spirituality was measured using three questions: Do you consider yourself religious or spiritual?; How important is religion, spirituality, or faith in your life?; and If religious, to what religion do you belong?. The country level of religiosity/secularity was appraised using data from the Gallup Poll 2005-2009. General linear mixed models, adjusting for patient characteristics and country differences were applied. Overall, 49.2% of patients considered themselves to be religious/spiritual. Being religious/spiritual and considering religion/spirituality as important in ones life was positively associated with quality of life, satisfaction with life and health behaviors. However, among patients living in more secular countries, religion/spirituality was negatively associated with physical and mental health.nnnCONCLUSIONnReligiosity/spirituality is an independent predictor for some PROs, but has differential impact across countries.