The impact of the severity of disease and social disadvantage on quality of life in families with congenital cardiac disease

2006 ◽  
Vol 16 (1) ◽  
pp. 67-75 ◽  
Author(s):  
Lutz Goldbeck ◽  
Juliane Melches
Keyword(s):  
Quality Of Life ◽  
Cardiac Disease ◽  
Parental Education ◽  
Social Disadvantage ◽  
Computer Assisted ◽  
Severity Of Disease ◽  
Congenital Cardiac Disease ◽  
Severity Of The Disease ◽  
The Impact

Objective: Increasing rates of survival have raised the question of medical and psychosocial factors contributing to quality of life of patients with congenital cardiac disease. We investigated the impact of the severity of disease, and social disadvantage, on the quality of life of patients and their primary caregivers. Methods: One hundred and thirty two families participated in a computer-assisted evaluation of their quality of life in a German outpatient centre for paediatric cardiac diseases. Quality of life for the patients was evaluated by a multi-dimensional proxy-measure. The quality of life of the caregivers was evaluated by a multi-dimensional self-reporting measure. Severity of the disease was evaluated by the responsible paediatrician. Social disadvantage was defined as single-parent status, ethnic minority status, unfinished parental education or professional training, and/or unemployment. Analyses of variance were calculated with mild, moderate, or severe forms of disease, and risk as opposed to no risk for social status, both factors being treated independently, and the quality of life of the patients and their caregivers as dependent variables. Results: We demonstrated significant effects of the severity of disease on the quality of life of the children, and of social disadvantage on the quality of life of both the children and their parents. A significant interactive effect indicated a cumulative negative impact of the severity of the disease and social disadvantage on the quality of life of the patients. Conclusion: Programmes providing psychosocial support for children with cardiac disease and their caregivers should consider risk factors which are both medical and social.

The impact of oral health on the quality of life of young patients with congenital cardiac disease

2009 ◽  
Vol 19 (03) ◽  
pp. 252 ◽  
Author(s):  
Marcio A. da Fonseca ◽  
Meredith Evans ◽  
Douglas Teske ◽  
Sarat Thikkurissy ◽  
Homa Amini
Keyword(s):  
Quality Of Life ◽  
Oral Health ◽  
Cardiac Disease ◽  
Young Patients ◽  
Congenital Cardiac Disease ◽  
The Impact

Health-related quality of life in chronic liver disease: the impact of type and severity of disease

2001 ◽  
Vol 96 (7) ◽  
pp. 2199-2205 ◽  
Author(s):  
Zobair M Younossi ◽  
Navdeep Boparai ◽  
Lori Lyn Price ◽  
Michelle L Kiwi ◽  
Marilyn McCormick ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Liver Disease ◽  
Chronic Liver Disease ◽  
Chronic Liver ◽  
Health Related Quality ◽  
Severity Of Disease ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Quality of life following surgery for congenital cardiac malformations in neonates and infants

2005 ◽  
Vol 15 (S1) ◽  
pp. 174-178 ◽  
Author(s):  
Kathleen Mussatto ◽  
James Tweddell
Keyword(s):  
Quality Of Life ◽  
Future Research ◽  
Cardiac Malformations ◽  
The Past ◽  
Congenital Cardiac Disease ◽  
Major Shift ◽  
Neonates And Infants ◽  
The Impact

The past two decades have witnessed a major shift towards repair of most congenital cardiac malformations during the neonatal or infant periods of life.1 Early anatomic correction or palliation, dramatic improvements in survival, and reduced morbidity due to improvements in perioperative and long-term medical management, have resulted in new populations of children that have reaped the benefits of the best care currently available for treatment of congenital cardiac disease. The impact of the congenital cardiac malformations, however, extends far beyond the walls of the hospital or clinic where we diagnose, treat, and follow our patients. The breakthrough of achieving predictable results with repair or palliation of most lesions during the neonatal and infant periods mandates us to look beyond survival, and to examine the lives our patients lead when they are outside of our care. Our purpose in this review is to discuss the measures of psychosocial outcome that are appropriate for exploration in those neonates and infants who survive cardiac surgery, to explore what is known about the psychosocial outcomes and quality of life for these patients, and what needs exist for future research.

Identity formation in adolescents with congenital cardiac disease: a forgotten issue in the transition to adulthood

2011 ◽  
Vol 21 (4) ◽  
pp. 411-420 ◽  
Author(s):  
Koen Luyckx ◽  
Eva Goossens ◽  
Carolien Van Damme ◽  
Philip Moons
Keyword(s):  
Quality Of Life ◽  
Depressive Symptoms ◽  
Identity Formation ◽  
Cardiac Disease ◽  
Strong Sense ◽  
Developmental Task ◽  
Identity Statuses ◽  
Congenital Cardiac Disease ◽  
Sense Of Identity

AbstractIdentity formation is a core developmental task in adolescence and functions as a key resource for transitioning to adulthood. This study investigated how adolescents with congenital cardiac disease form their identity and how it relates to demographic and medical parameters, quality of life, perceived health, depressive symptoms, and loneliness. A total of 429 adolescents aged 14–18 years with congenital cardiac disease and 403 matched controls completed questionnaires on identity and all outcome variables. There were five meaningful identity statuses, similar to those obtained in the control sample, which were found in the patient sample. Of them, two statuses – achievement and foreclosure – were characterised by a strong sense of identity; one status – diffused diffusion – especially was characterised by a weak sense of identity combined with high scores on worry about the future. These identity statuses were differentially related to outcome variables, with individuals in diffused diffusion especially scoring highest on depressive symptoms, problems in school, treatment anxiety, and communication problems with clinicians, and lowest on quality of life. Having a strong sense of personal identity was found to protect against such maladaptive outcomes. In sum, most adolescents with congenital cardiac disease moved through their identity formation process in a similar manner to other adolescents. Adolescents with a diffused identity were particularly at risk of experiencing maladjustment and problems in treatment adherence. Hence, developing intervention strategies to provide continuity of care on the road to adulthood involves paying attention to core developmental tasks, such as identity formation in adolescents with congenital cardiac disease.

Impact of arrhythmias on health-related quality of life in adults with congenital cardiac disease

2005 ◽  
Vol 15 (06) ◽  
pp. 627 ◽  
Author(s):  
Thiemo A. Irtel ◽  
Christian Vetter ◽  
Thomas Stuber ◽  
Alexa Kuemin ◽  
Thilo Heimes ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cardiac Disease ◽  
Health Related Quality ◽  
Congenital Cardiac Disease ◽  
Related Quality ◽  
Health Related

Patient-reported outcomes in congenital cardiac disease: are they as good as you think they are?

2010 ◽  
Vol 20 (S3) ◽  
pp. 143-148 ◽  
Author(s):  
Philip Moons
Keyword(s):  
Quality Of Life ◽  
Cardiac Disease ◽  
Patient Reported Outcomes ◽  
Well Being ◽  
Main Question ◽  
Congenital Cardiac Disease ◽  
Patient Reported ◽  
Satisfaction With Treatment

AbstractPatient-reported outcomes are “any outcome based on data provided by patients or patient proxy as opposed to data provided from other sources”. Examples of patient-reported outcomes are quality of life, well-being, functional status, symptoms, adherence to treatment, satisfaction with treatment, and utility or preference-based measures. The main question of this manuscript is whether patient-reported outcomes in patients with congenital cardiac disease are as good as we think they are. In general, we could say yes, because numerous studies show that patients with congenital cardiac disease have an excellent quality of life. By contrast, we could say no, because patients generally overestimate their functioning, and up to two out of three patients are not compliant with the prescribed therapy or recommendations for follow-up. However, most importantly, we have to say that we do not know whether the patient-reported outcomes are good, because research with patient-reported outcomes in congenital cardiac disease is limited. Hence, patient-reported outcomes should be a priority on the agenda for research in the domain of congenital cardiac disease.

scholarly journals The development of a new measure of quality of life for children with congenital cardiac disease

2006 ◽  
Vol 16 (2) ◽  
pp. 165-172 ◽  
Author(s):  
Susan Macran ◽  
Yvonne Birks ◽  
Jonathan Parsons ◽  
Patricia Sloper ◽  
Geoff Hardman ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young People ◽  
Cardiac Disease ◽  
Clinical Context ◽  
Children And Young People ◽  
The United Kingdom ◽  
Congenital Cardiac Disease ◽  
Reliable Instrument ◽  
Health Related

The purpose of the study was to develop a questionnaire measuring health-related R1 quality of life for children and adolescents with congenital heart disease, the ConQol, that would have both clinical and research applications. We describe here the process of construction of a questionnaire, the piloting and the development of a weighted scoring system, and data on the psychometric performance of the measure in a sample of 640 children and young people recruited via 6 regional centres for paediatric cardiology from across the United Kingdom. The ConQol has two versions, one designed for children aged from 8 to 11 years, and the other for young people aged from 12 to 16 years. Initial findings suggest that it is a valid and reliable instrument, is acceptable to respondents, and is simple to administer in both a research and clinical context.

scholarly journals PEDIATRIC ASTHMA: IMPACT OF THE DISEASE IN CHILDREN RECEIVING OUTPATIENT TREATMENT IN SOUTHERN BRAZIL

2020 ◽  
Vol 38 ◽  
Author(s):  
Cristian Roncada ◽  
Rodrigo Godinho de Souza ◽  
Daniela Duarte Costa ◽  
Paulo Márcio Pitrez
Keyword(s):  
Quality Of Life ◽  
Severe Asthma ◽  
Pediatric Asthma ◽  
Mild Asthma ◽  
Southern Brazil ◽  
Adherence To Treatment ◽  
Related Quality ◽  
Severity Of The Disease ◽  
The Impact

ABSTRACT Objective: To evaluate the impact of pediatric asthma on patients of a specialized outpatient clinic in Southern Brazil. Methods: The study included children aged 8 to 17 years old with asthma diagnosis (mild, moderate and severe) under treatment at the asthma clinic of Hospital São Lucas da Pontifícia Universidade Católica do Rio Grande do Sul (PUCRS), Brazil. Measurements of spirometry, quality of life, disease control and atopy tests were applied. Results: A total of 66 children were included in the study and divided into groups, according to the severity of the disease: mild, moderate or severe asthma. The results showed similarities in both the treatment and the impact of asthma between groups, except for adherence to treatment: the group with mild asthma showed least adherence to treatment, and the group with severe asthma, greater adherence (p=0.011). As to school absenteeism, the group with severe asthma showed higher frequency (p=0.012), with over 10 days per year (p=0.043). Spirometry showed lower volume/capacity for the group with moderate asthma, followed by the groups with severe and mild asthma. All groups had a high prevalence of allergic asthma, with mites as the main allergens. For quality of life (QOL), and health-related quality of life (HRQOL) levels, there were no differences between groups. In addition, the values were close to the acceptable levels for the total score and for each one of the six domains. The same occurred for the HRQOL-asthma module. Conclusions: QOL and HRQOL present acceptable levels regardless of the severity of the disease.

scholarly journals The Impact of Parents Education Level on Career Aspiration Enhancement

2018 ◽  
Author(s):  
Rahmi Dwi Febriani ◽  
Zadrian Ardi ◽  
Puji Gusri Handayani
Keyword(s):  
Quality Of Life ◽  
Student Attitudes ◽  
Parental Education ◽  
Education Level ◽  
Career Aspiration ◽  
Career Achievement ◽  
The Family ◽  
The Future ◽  
The Impact

Career aspiration is a very important because aspiration is one indicator ofindividual career achievement in the future. Students who have prepared careeroptions in the future have a better quality of life than those who have notprepared yet. But the fact in the field there are still students who are notinterested to continue education to college, but education is the beginning ofdetermining one's career. The formation of student attitudes about careeraspirations is the result of interaction with the family. Of the variouscharacteristics of the family, the level of parental education is one of the factorsthat affect the aspirations of a child's career.Parents who come from highereducation tend to be able to create a child who has personally constructed andeducated among them in the desire to obtain a successful career in the future.

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