| 1. |
- Bay, Annika, 1970-, et al.
(författare)
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Facilitators and barriers for physical activity in adults with congenital heart disease
- 2018
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Ingår i: European Heart Journal. - : Oxford University Press. - 0195-668X .- 1522-9645. ; 39:suppl_1, s. 1120-1121
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Tidskriftsartikel (refereegranskat)abstract
- Background: A majority of adults with congenital heart disease (CHD) have reduced exercise capacity and do not reach the recommended level of physical activity. A physically active lifestyle is essential to maintain health and counteract acquired cardiovascular disease. This study illuminates aspects that may be relevant for performing physical activity.Purpose: To describe facilitators and barriers for physical activity in adults with CHD.Methods: Semi-structured interviews were performed individually with fourteen adults (age 19–68 years, women=7) with complex CHD. The interviews were analyzed using qualitative content analysis.Results: Aspects that may enable or inhibit physical activity were found in two domains; Facilitators and Barriers, which both consisted of four categories physical, psychological, psychosocial and environmental aspects (Table 1).
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| 2. |
- Bay, Annika, 1970-, et al.
(författare)
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Symptoms during pregnancy in primiparous women with congenital heart disease.
- 2024
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Ingår i: Scandinavian Cardiovascular Journal. - : Taylor & Francis. - 1401-7431 .- 1651-2006. ; 58:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: As more women with congenital heart disease (CHD) are reaching childbearing age, it becomes more common for their symptoms to be evaluated during pregnancy. However, pregnancy-related symptoms are similar to those caused by heart disease. This study investigated the prevalence of factors associated with symptoms during pregnancy in women with CHD.Methods: The national birth register was searched for primiparous women with CHD who were registered in the national quality register for patients with CHD.Results: Symptoms during the third trimester were reported in 104 of 465 evaluated women. The most common symptom was palpitations followed by dyspnea. Factors associated with symptoms were tested in a univariable model; higher NYHA classification (>1) (OR 11.3, 95%CI 5.5-23.2), low physical activity (≤3 h/week) (OR 2.1 95%CI 1.3-3.6) and educational level ≤ 12 years (OR 1.9 95%CI 1.2-3.0) were associated with having symptoms. In multivariable analysis, low physical activity level (OR 2.4 95%CI 1.2-5.0) and higher NYHA class (OR 11.3 95%CI 5.0-25.6) remained associated with symptoms during pregnancy. There were no cases with new onset of impaired systemic ventricular function during pregnancy.Conclusion: Symptoms during pregnancy are common in women with CHD but are often already present before pregnancy. Because ordinary symptoms during pregnancy often overlap with symptoms of heart disease, it is important to know if symptoms were present before pregnancy and if they became worse during pregnancy. These results should be included in pre-pregnancy counselling and considered in the monitoring during pregnancy.
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| 3. |
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| 4. |
- Bratt, Ewa-Lena, 1970, et al.
(författare)
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Adolescents with congenital heart disease - Parent’s perceptions and expectations about transition and transfer to adult care
- 2016
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Ingår i: 46th Nordic Meeting in Paediatric Cardiology. 21-23 September 2016. Båstad, Sweden.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: People with congenital heart disease (CHD) might need life-long medical follow-up and transfer to adult care (ACHD). An optimal transition process involves collaboration where parents and other family members are integrated, along with the patient and healthcare providers. The active role might be difficult for parents. Aim: Explore parent’s perceptions and expectations about transition and transfer to adult care. Method: Semi-structured interviews with 18 parents to adolescents with CHD, 14-18 years of age, were conducted in four pediatric cardiology settings in Sweden. Results: Three different categories were formulated: Need of knowledge; information addressed to the adolescent regarding the CHD, coming treatment and late-effects, but also general information about the ACHD-organization and future follow-up was emphasized. Other important aspects were smoking, alcohol, contraceptives, sex and pregnancy. Information given in a group and face-to face information was preferred included a visit to ACHD-outpatient clinic before transfer. Mixed feelings; the parents knew that transfer was a natural step, but were concerned and worried due to lack of knowledge about the process and new caregivers. Being involved made them feel secure. Timing; the parents expressed concerns over when and how the process should start. The majority considered the age of 11-12 year too early, while 15-16 years were considered more appropriate to start the transition process, depending of the adolescent’s maturity. Most parents had started handing over the responsibility for the medical treatment, but none the contact with the health care providers. Conclusion: The parents’ plea for involvement in the transition planning, being aware of the shift in roles and gradually giving the responsibility to the adolescent. One important aspect was to inform about the new caregiver and future follow-up. Parents considered disease specific information given by the nurse or physician as optimal using different learning methods.
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| 5. |
- Bratt, Ewa-Lena, 1970, et al.
(författare)
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Do not forget the parents : Parents' concerns during transition to adult care for adolescents with congenital heart disease
- 2018
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Ingår i: Child Care Health and Development. - : Wiley. - 0305-1862 .- 1365-2214. ; 44:2, s. 278-284
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Growing up with congenital heart disease (CHD) often means transfer to adult care and lifelong medical follow-up. An optimal transition process usually involves a multipart collaboration between the patient, their parents and other family members, and the healthcare providers. Taking an active role while knowing when it is time to step aside can be difficult for all the concerned parties, even the healthcare professionals. The aim of the present study therefore, was to explore parents' expectations and needs during their adolescent's transition to adult care.METHOD: Semi-structured interviews were conducted with 18 parents of 16 adolescents (aged 13-18 years) with CHD in 4 pediatric cardiology settings in Sweden. The interviews were analysed with qualitative content analysis.RESULTS: The analysis resulted in 2 main themes: (a) Feeling secure-the importance of being prepared and informed. This theme focused on the need to be prepared and informed about transition and future transfer to adult care. (b) Recognizing when to hand over at the right time. This theme addressed the process of handing over the responsibility from the parent to the adolescents and contained handing over from pediatric care to adult care.CONCLUSION: Being prepared and informed about the upcoming transition process was essential. The parents underlined the importance of being involved in the transition planning for gradually handing over responsibility to the adolescent. They also considered establishing contact with the adult healthcare team before transfer as important and needed to be assured that CHD-related information of importance for the young person's daily life would be given.
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| 6. |
- Sparud Lundin, Carina, 1964, et al.
(författare)
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Health care providers' attitudes towards transfer and transition in young persons with long term illness : a web-based survey
- 2017
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Ingår i: BMC Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 17:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Transition programs in health care for young persons with special health care needs aim to maximize lifelong functioning. Exploring health care professionals' perspective may increase the possibility of successful implementation of transition programs. The aim was to survey health care professionals' attitudes towards components and barriers on transition and transfer in young people with long-term medical conditions with special health care needs.METHODS: A cross-sectional web-based survey was sent by e-mail to 529 physicians and nurses in Swedish pediatric and adult outpatient clinics. Response rate was 38% (n = 201). The survey consisted of 59 questions regarding different aspects of components and barriers on transition and transfer. Descriptive statistics were computed to summarize demographic data and categorized responses. The Chi square test was used for comparison between proportions of categories.RESULTS: Most respondents agreed on the destinations of care for adolescents within their specialty. Age and psychosocial aspects such as maturity and family situations were considered the most important initiators for transfer. Joint meeting with the patient (82%); presence of a transition coordinator (76%) and a written individualized transfer plan (55%) were reported as important transition components. Pediatric care professionals found the absence of a transition coordinator to be more of a transition barrier than adult care professionals (p = 0.018) and also a more important transfer component (p = 0.017). Other barriers were lack of funding (45%) and limited clinical space (19%). Transition programs were more common in university hospitals than in regional hospitals (12% vs 2%, p = <0.001) as well as having a transition coordinator (12% vs 3%, p = 0.004).CONCLUSION: The findings highlight a willingness to work on new transition strategies and provide direction for improvement, taking local transition components as well as potential barriers into consideration when implementing future transition programs. Some differences in attitudes towards transitional care remain among pediatric and adult care professionals.
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| 7. |
- Apers, Silke, et al.
(författare)
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Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS) : Rationale, design, and methods
- 2015
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Ingår i: International Journal of Cardiology. - : Elsevier BV. - 0167-5273 .- 1874-1754. ; 179, s. 334-342
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Tidskriftsartikel (refereegranskat)abstract
- Background: Data on patient-reported outcomes (PROs) in adults with congenital heart disease (CHD) are inconsistent and vary across the world. Better understanding of PROs and their differences across cultural and geographic barriers can best be accomplished via international studies using uniform research methods. The APPROACH-IS consortium (Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study) was created for this purpose and investigates PROs in adults with CHD worldwide. This paper outlines the project rationale, design, and methods. Methods/design: APPROACH-IS is a cross-sectional study. The goal is to recruit 3500-4000 adults with CHD from 15 countries in five major regions of the world (Asia, Australia, Europe, North and South America). Self-report questionnaires are administered to capture information on PRO domains: (i) perceived health status (12-item Short-form Health Survey & EuroQOL-5D); (ii) psychological functioning (Hospital Anxiety and Depression Scale); (iii) health behaviors (Health-Behavior Scale-Congenital Heart Disease); and (iv) quality of life (Linear Analog Scale & Satisfaction With Life Scale). Additionally, potential explanatory variables are assessed: (i) socio-demographic variables; (ii) medical history (chart review); (iii) sense of coherence (Orientation to Life Questionnaire); and (iv) illness perceptions (Brief Illness Perception Questionnaire). Descriptive analyses and multilevel models will examine differences in PROs and investigate potential explanatory variables. Discussion: APPROACH-IS represents a global effort to increase research understanding and capacity in the field of CHD, and will have major implications for patient care. Results will generate valuable information for developing interventions to optimize patients' health and well-being.
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| 8. |
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| 9. |
- Bay, Annika, 1970-
(författare)
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Being physically active as an adult with congenital heart disease
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Due to advances in medical and surgical care adults with congenital heart disease (CHD) is a growing and aging population, that now outnumbers the children with CHD. In general, adults with CHD have reduced aerobic exercise capacity and nearly half of the patients do not reach current recommendations on physical activity. It is known that a low level of physical activity is associated with an increased risk for acquired cardiovascular disease. Studies has shown that adults with CHD are at the same, or even higher risk as the general population, for developing acquired cardiovascular disease.Aim: The overall aim was to explore physical activity in adults with CHD with respect to associated factors, exercise self-efficacy and their own experiences.Methods: This thesis is based on four papers. Paper I included 471 adults with CHD from three tertiary care centres in Sweden. The participants completed questionnaires measuring patient reported outcomes (e.g. SF-12) including physical activity level. Paper II was based on data from 79 adults with CHD from two tertiary care centers in Sweden and 42 matched controls. All participants completed questionnaires on exercise self-efficacy and quality of life, wore an activity monitor during four consecutive days and performed muscle endurance tests. Paper I and II were of cross-sectional design and analyses were done using logistic regression. In paper III and IV data were collected through structured interviews for 14 participants. They were asked about their experiences of being physically active (paper III), what they considered as physical activities, and their experiences of enablers and barriers to physical activity (paper IV). Qualitative content analysis was used in papers III and IV.Results: Physical activity level (paper I) and exercise self-efficacy (paper II) were strongly associated with age where those over 40 years had a lower level of physical activity and lower exercise self-efficacy. Further, in paper I, it appeared that patient reported outcomes from SF-12 were strongly associated with physical activity level. In paper II, exercise self-efficacy was associated with performance in a muscle endurance tests. Paper III revealed an overall theme – It´s like balancing on a slackline that illustrates how adults with CHD described themselves in relation to physical activity. This overall theme consisted of four themes: (1) Being an adventurer – enjoying the challenges of physical activity; (2) Being a realist – adapting to physical ability; (3) Being a non-doer – lacking prerequisites for physical activity and (4) Being an outsider – feeling excluded depending on physical ability. In paper IV, the analysis revealed a description of what adults with CHD consider to be physical activity and considered as enablers and barriers for physical activity. Four categories appeared; physical aspects, psychological aspects, psychosocial aspects and environmental aspects. In the psychosocial aspect, social support and encouragement in childhood to be physically active and no restrictions from e.g. parents, teachers and health care increased physical activity in adulthood.Conclusions: Age, social support and accepting physical limitations seem to have an important impact regarding physical activity level and exercise self-efficacy. In contrast, the complexity of CHD and other medical factors appear to be of less importance for adults with CHD in relation to physical activity. In order to support adults with CHD to increase their physical activity and reach their full potential, it is important to explore and consider the various aspects that may affect physical activity in this population.
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| 10. |
- Bay, Annika, et al.
(författare)
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Enablers and barriers for being physically active : experiences from adults with congenital heart disease
- 2021
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Ingår i: European Journal of Cardiovascular Nursing. - : Sage Publications. - 1474-5151 .- 1873-1953. ; 20:3, s. 276-284
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Tidskriftsartikel (refereegranskat)abstract
- Background: In general, adults with congenital heart disease have reduced exercise capacity and many do not reach the recommended level of physical activity. A physically active lifestyle is essential to maintain health and to counteract acquired cardiovascular disease, therefore enablers and barriers for being physically active are important to identify.Aim: To describe what adults with complex congenital heart diseases consider as physical activity, and what they experience as enablers and barriers for being physically active. Methods: A qualitative study using semi-structured interviews in which 14 adults with complex congenital heart disease (seven women) participated. The interviews were analysed using qualitative content analysis.Results: The analysis revealed four categories considered enablers and barriers - encouragement, energy level, approach and environment. The following is exemplified by the category encouragement as an enabler: if one had experienced support and encouragement to be physically active as a child, they were more positive to be physically active as an adult. In contrast, as a barrier, if the child lacked support and encouragement from others, they had never had the opportunity to learn to be physically active.Conclusion: It is important for adults with congenital heart disease to have the opportunity to identify barriers and enablers for being physically active. They need knowledge about their own exercise capacity and need to feel safe that physical activity is not harmful. This knowledge can be used by healthcare professionals to promote, support and eliminate misconceptions about physical activity. Barriers can potentially be transformed into enablers through increased knowledge about attitudes and prerequisites. © The European Society of Cardiology 2020.
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| 11. |
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| 12. |
- Bay, Annika, 1970-, et al.
(författare)
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It ́s like balancing on a slackline : A description from adults living with congenital heart disease
- 2018
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Ingår i: Cardiology in the Young. - : Cambridge University Press. - 1047-9511 .- 1467-1107. ; 28:Suppl. S1, s. S37-S37
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Several studies have shown that adults with congenital heart disease have reduced exercise capacity and do not reach the recommended daily level of physical activity. With this in view, it is of great importance to investigate how this population experiences physical activity. The aim of the study is to illuminate how adults with congenital heart disease describes themselves in relation to physical activity.Methods: Semi-structured interviews with fourteen adults with complex congenital heart disease were performed. Patients were recruited from the clinic waiting list, based on their scheduled follow up and diagnosis. Interviews were analysed by qualitative content analysis.Results: The overall theme It´s like balancing on a slackline illustrates how adults with congenital heart disease described themselves in relation to physical activity. The overall theme consists of four themes: Being an adventurer- enjoying the challenges of physical activity, Being a realist- adapting to physical ability, Beinga non-doer- lacking prerequisites for physical activity and Being an outsider- feeling excluded depending on physical ability.Conclusions: The descriptions on themselves as a physically active were not constant or one-dimensional and the descriptions varied during the interviews, related to different time periods in life. It meant that they could described themselves as being an adventurer liking tough challenges, but at the same time describing themselves as being a non-doer with uncertainty over their physical strength. The findings point out specific factors for adults with CHD that might constitute as obstacles, but also possibilities for being physically active.
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| 13. |
- Bay, Annika, et al.
(författare)
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It's like balancing on a slackline : A description of how adults with congenital heart disease describe themselves in relation to physical activity
- 2018
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 27:15-16, s. 3131-3138
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Tidskriftsartikel (refereegranskat)abstract
- AIMS AND OBJECTIVES: To illuminate how adults with CHD describe themselves in relation to physical activity.BACKGROUND: Several studies have shown that adults with congenital heart disease (CHD) have reduced exercise capacity and do not reach the recommended daily level of physical activity. With this in view, it is of immense importance to investigate how this population experiences physical activity.DESIGN: Qualitative study with semi-structured interviews analysed with qualitative content analysis.METHODS: Semi-structured interviews were individually performed with fourteen adults (women=7, age 19-68 years) with complex CHD. Patients were purposively recruited from the clinic waiting list, based on a scheduled follow-up and diagnosis.RESULTS: The overall theme, It's like balancing on a slackline, illustrates how adults with CHD described themselves in relation to physical activity. This overall theme consisted of four subthemes: (1) Being an adventurer- enjoying the challenges of physical activity; (2) Being a realist- adapting to physical ability; (3) Being a non-doer- lacking prerequisites for physical activity; and (4) Being an outsider- feeling excluded depending on physical ability.CONCLUSIONS: Adults with CHD seem to have a diverse relationship to physical activity and it involves various aspects throughout the lifespan. The findings point out factors that might constitute as obstacles for being physically active, specific for people with chronic conditions like CHD. This highlights the importance of further exploring the hindering and facilitating factors for being physically active in order to get a deeper understanding of how to support adults with CHD to be physically active.RELEVANCE TO CLINICAL PRACTICE: Given the diverse relationship to physical activity, nurses have to further investigate the patients' relationship to physical activity, in order to support a healthy lifestyle. Nurses and allied health professionals should offer individualized exercise prescriptions and education about suitable physical activities in relation to physical ability. This article is protected by copyright. All rights reserved.
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| 14. |
- Bay, Annika, et al.
(författare)
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Patient reported outcomes are associated with physical activity level in adults with congenital heart disease.
- 2017
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Ingår i: International Journal of Cardiology. - : Elsevier BV. - 0167-5273 .- 1874-1754. ; 243, s. 174-179
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: In general, adults with congenital heart disease (CHD) have impaired exercise capacity, and approximately 50% do not reach current recommendations on physical activity. Herein we analysed factors associated with physical activity level (PAL) in adults with CHD by using patient-reported outcomes (PRO).METHODS: Patients with CHD (n=471) were randomly selected from the national register on CHD and categorized according to complexity of lesions - simple (n=172, 39.1±14.6years), moderate (n=212, 39±14.1years), and severe (n=87, 31.7±10.7years). Participants completed a standardized questionnaire measuring PRO-domains including PAL. Variables associated with PAL were tested in multivariate logistic regression.RESULTS: PAL was categorized into high (≥3 METs ≥2.5h/week, n=192) and low (≥3 METs <2.5h/week, n=279). Patients with low PAL were older (42.6 vs. 35.8years, p≤0.001), had more prescribed medications (51% vs. 39%, p=0.009), more symptoms (25% vs. 16%, p=0.02) and comorbidity (45% vs. 34% p=0.02). Patients with low PAL rated a lower quality of life (76.6 vs. 83.4, p<0.001), satisfaction with life (25.6 vs. 27.3, p=0.003), a lower Physical Component Summary score (PCS) (78.1 vs. 90.5, p<0.001) and Mental Component Summary score (MCS) (73.5 vs. 79.5, p<0.001). Complexity of heart lesion was not associated with PAL. The included PROs - separately tested in the model, together with age were associated with PAL.CONCLUSIONS: PCS and MCS are stronger associated with PAL than age and medical factors. The use of these PROs could therefore provide valuable information of benefit for individualized advice regarding physical activity to patients with CHD.
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| 15. |
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| 16. |
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| 17. |
- Berghammer, Malin, 1970
(författare)
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children, adolescenst and adults with congenital heart disease- a view over a new population
- 2008
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Ingår i: Joint Meeting in peadiatric cardiology.
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Konferensbidrag (refereegranskat)abstract
- Children, adolescents and young adults with congenital heart disease- a view over a new population from different perspectives Malin Berghammer; RN, MSc, PhD student Dept of Pediatric, Queen Silvias Children Hospital Sahlgrenska Academy at Goteborg University, Sweden Advances in diagnosis, medical management and surgical intervention have improved the longevity and quality of life for children with congenital heart diseases (CHD). The population of grown-up with congenital heart disease (GUCH) is a new population and unique in many ways since the population to a great extent is created by the admirable development. At present time, there are as many adults with CHD as there are children and the adult population is estimated to grow at a rate of 5 % per year. Compared to the teenage-period, earlier studies has indicated that young adulthood is a more difficult time since many dimensions are being actualised during this period, regarding the physical health, relationships, work and future. The state of health often worsen in adult age, it can be seen as arrhythmias, heart failure, endocarditis or degeneration in earlier made surgery. The experienced state of health is also changing over time; the big adjustment after the operation is turning pale and the experience of the effect of the heart disease is increasing with time. Clinical practise has also indicated that the cardiac lesion is not always the major problem for these persons, rather psychosocial issues pertain to quality of life is of more relevance. One group where life expectancy has increased significantly during the last two decades is children born with only one functional ventricle. For these children it requires a three or more staged palliative series of heart surgery, where the surgical goal is to improve hemodynamics through different developmental stages, where the final stage is now called a Total Cavo Pulmonary Connection, (TCPC). Many centres can today report an improving survival rate, but only reporting survival rate makes the picture incomplete and therefore there is a gap of knowledge to be filled. Four studies will be included in the thesis and the main focus and interest is to study the health related quality of life within different perspectives, the impact of illness and how QoL measurement correlate to different variables, such as diagnose, age, gender, NYHA-classification. The following studies are planned to be included and at the conference I will present some preliminary data from the two first studies. 1) Health related quality of life in adults with congenital heart disease in relation with physiological, anatomical and demographic data- an analysis of the Swedish GUCH-registry 2) Young adult’s experiences of living with congenital heart disease- an interview study 3) Quality of Life in children operated with TCPC-procedure, from the parent’s perspective, compared with longitudinal data 4) Health related Quality of Life in children and adolescents corrected with a TCPC procedure
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| 18. |
- Berghammer, Malin, 1970-, et al.
(författare)
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Committed to Life : Adolescents’ and Young Adults’ Experiences of Living with Fontan Circulation
- 2015
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Ingår i: Congenital Heart Disease. - : Computers, Materials and Continua (Tech Science Press). - 1747-079X .- 1747-0803. ; 10:5, s. 403-412
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Tidskriftsartikel (refereegranskat)abstract
- Background Single ventricle defects are among the most complex congenital heart defects and the development of advanced surgical procedures in recent decades has created the first generation of adolescents and young adults living with this condition. Yet little is known about how these individuals experience life and what impact the heart defect has on their life in general. Objective The aim was to illuminate and gain a deeper understanding of adolescents’ and young adults’ experiences of living with a surgically palliated univentricular heart. Design Seven open-ended in-depth interviews were conducted, transcribed, and analyzed according to the henomenological hermeneutical method. All adolescents and young adults operated before 1995 according to the Fontan procedure or the total cavo-pulmonary connection procedure at one pediatric cardiology unit were included in the study. They were 17–32 years of age (median age 22 years). Results The interpretation of the interview transcripts showed that the participants experienced living with a surgically palliated univentricular heart in terms of feeling exceptional, strong, and healthy. This was supported by two structural analyses, where three themes emerged: happiness over being me, focusing on possibilities, and being committed to life. Conclusion Living with a Fontan circulation included negative experiences but the analyses clearly demonstrated a feeling of being strong and healthy. An appreciation of having survived and being committed to life was found to be an integral part of the development of the interviewees’ existential growth. This probably strengthens them further in their ability to balance expectations and hurdles in life. This study provides valuable insights into the experience of patients after the Fontan procedure and the importance of a positive health care environment throughout their lives.
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| 19. |
- Berghammer, Malin, 1970-, et al.
(författare)
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Comparison of participants and non-participants in patient-reported outcome surveys : the case of Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study
- 2017
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Ingår i: Cardiology in the Young. - : CAMBRIDGE UNIV PRESS. - 1047-9511 .- 1467-1107. ; 27:3, s. 427-434
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Tidskriftsartikel (refereegranskat)abstract
- Background: The last decade has seen a vast increase in the use of patient-reported outcomes. As patientreported outcomes are used in order to capture patients' perspectives of their health and illness, it is a prerequisite for accurate patient-reported outcome evaluations to use representative samples. In order to evaluate representativeness, the present study focussed on the comparison between participants and non-participants in the Swedish branch of the international study APPROACH-IS (Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study), regarding demographic, clinical, and health status characteristics. Methods: Eligible patients for APPROACH-IS were identified and selected from SWEDCON, the Swedish registry for congenital heart disease (CHD). Overall, 912 eligible patients were identified, of whom 471 participated, 398 did not participate, and 43 were either unreachable or declined to participate in APPROACH-IS. The participants and nonparticipants were compared in terms of statistical significance and effect sizes. Results: Significant differences were observed between participants and non-participants for sex, age, primary diagnosis, number of cardiac operations, and fatigue; however, the effect sizes were in general small, except for the difference in primary diagnosis. No differences between the two groups were found in number of catheterisations, implanted device, the distribution of NYHA functional class, or health status and symptoms. Conclusions: This study shows that participants and non-participants are relatively comparable groups, which confirms the representativeness of the participants. The Swedish data from APPROACH-IS can therefore be reliably generalised to the population of adults with CHD in Sweden.
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| 20. |
- Berghammer, Malin, 1970-, et al.
(författare)
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Exploration of disagreement between the patient’s self reported limitations and limitations assessed by caregivers in adults with congenital heart disease
- 2018
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Ingår i: European Heart Journal. - : Oxford University Press (OUP). - 0195-668X .- 1522-9645. ; 39:Suppl 1
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Tidskriftsartikel (refereegranskat)abstract
- Background: The New York Heart Association (NYHA) classification is applied in a wide spectrum of heart diseases including adult patients with congenital heart disease (ACHD). The NYHA-class assessment is often based on the evaluation by the caregiver, but to what extent it correlates with the patient's view of their function is not fully known.Purpose: To investigate the relation between the patient's self-reported physical limitations, symptoms, other heart defect related factors and NYHA-class assessed by the caregiver.Methods: Eligible patients (n=333, age 39.2±13.6 years) were identified and randomly selected from the national registry for CHD. All of the patients completed a standardized questionnaire measuring different PRO-domains. By combing self-reported data with registry data including NYHA-class, analyses of agreement of physical limitations were performed.Results: Almost 30% of the patients rated their limitations higher compared to the NYHA-class estimated by the caregiver. Patients with self-reported limitations and their NYHA-class underestimated by caregivers, more often reported symptoms, anxiety, lower health and worked fewer hours/week compared to other patients with CHD. There were no differences regarding sex, type of symptoms, prescribed medications, or complexity of cardiac lesion. In patients without self-reported limitations agreement with NYHA-class estimated by caregivers was 97%.Conclusion: Adult patients with CHD and self-reported limitations may not be correctly identified by the care-giver. Instruments for patient reported outcomes might improve the assessment of physical limitations and could further improve the correctness in evaluating the patient's status.
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| 21. |
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| 22. |
- Berghammer, Malin, 1970
(författare)
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Living with a congenital heart disease - adolescents' and young adults' experiences
- 2012
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- LIVING WITH A CONGENITAL HEART DISEASE: ADOLESCENTS’ AND YOUNG ADULTS’ EXPERIENCES Malin Berghammer Institute of Health and Caring Sciences, University of Gothenburg, Gothenburg, Sweden Abstract Adolescents and young adults with a congenital heart disease (CHD) belong to a new and in several respects unexplored population within health research. They represent a diversity of heart defects requiring different surgical procedures and interventions that create different physiological and anatomical structures, with various impacts on life. Extensive improvements in congenital cardiology and heart surgery have created new groups of children surviving into adolescence and adulthood. One of these new groups comprises adolescents and young adults living with a surgically palliated univentricular heart. The overall aim in this thesis was to illuminate how adolescents and young adults with a CHD experience life and their life situation. Furthermore, the thesis aims to describe the impact of a CHD on health perception, sense of coherence, quality of life and satisfaction with life in adolescents and young adults with a CHD or, in particular, a surgically palliated univentricular heart. A multi‐method approach was used, consisting of in‐depth interviews and surveys. The first two studies involved adults with various kinds of CHD. Study I involved six in‐depth interviews, analysed with the phenomenological‐hermeneutical method. Study II consisted of statistical analysis of EQ‐5D questionnaire data from 1435 adults included in the GUCH registry. The last two studies involved adolescents and young adults living with a surgically palliated univentricular heart. Seven in‐depth interviews in Study III were complemented by a survey in Study IV using the Sense of Coherence scale and the modified study‐specific Essence of Existence questionnaire. The 33 responses were analysed with a combination of content analysis and descriptive statistics. The results show that adolescents and adults with a CHD in most cases perceive their health to be good, and the same as their peers. Pain or discomfort and anxiety or depression were found to be prevalent health problems, but adults with a CHD reported less pain or discomfort than a general population. It was further shown that symptoms may occur even if the adult with a CHD reports himself/herself to be asymptomatic. Despite limitations in everyday life, adolescents and young adults with a surgically palliated univentricular heart experience satisfaction with their lives and see themselves as exceptional, strong and healthy. This indicate that there is no direct association between the severity of the heart defect and the experience of satisfaction with life. The findings suggest that the existential maturity they had developed, along with their experienced happiness over “being me”, may promote a stronger sense of coherence. The conclusion from this thesis was that, through a process of adaptation, the CHD becomes integrated and a normal part of life. However, adolescents and young adults could at the same time be seen as “walking a fine line” when balancing the aspects of health and disease that co‐exist in the life of a person with a CHD. Thus, the concept of “health within disease” (as opposed to “health within illness”) emerges to describe this population, since they experience themselves most of the time as healthy. Key words: congenital heart disease, health, hermeneutics, interviews, quality of life, sense of coherence ISBN 978-91-628-8506-9 http://hdl.handle.net/2077/29713
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- Berghammer, Malin, 1970
(författare)
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Medfödda hjärtfel hos vuxna
- 2005
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Ingår i: Medfödda hjärtfel hos vuxna : samlingsvolym. - Södertälje : Astra Zeneca. - 9186058983
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Bokkapitel (övrigt vetenskapligt/konstnärligt)
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| 24. |
- Berghammer, Malin, 1970, et al.
(författare)
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Self-reported health status (EQ-5D) in adults with congenital heart disease
- 2013
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Ingår i: International Journal of Cardiology. - : Elsevier BV. - 0167-5273 .- 1874-1754. ; 165:3, s. 537-543
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: Today, more patients with congenital heart disease (CHD) reach adulthood. There are conflicting findings concerning the relationship between quality of life (QoL) or health state for adults with CHD and the complexity of their CHD. The aim of the study was, firstly, to compare the reported health status and health perception of adult patients with CHD and, secondly, to investigate what variables influenced the patients' health status and health perception. Methods: Data from 1435 patients completing the EQ-5D questionnaire, which includes reported health status and health perception, were analyzed. Results: Valid EQ-5D data were reported by 1274 patients, showing overall results indicating a good health status. Problems were most frequently reported in the dimension "pain/discomfort" (31.9%) and "anxiety/depression" (29.8%). Higher occurrence of problems were reported by patients with complex disease i.e. single ventricle (p<0.001) and by female patients (p<0.0001). Symptomatic patients reported a lower health status (p<0.0001) and a lower perceived health on EQ-VAS (p<0.0001). Of the asymptomatic patients, 20.5% nevertheless reported problems in "pain/discomfort" and 22.2% in the "anxiety/depression" dimension. Conclusion: The health status of adults with CHD is influenced by symptoms, NYHA-classification, age and gender. Adults with CHD report a lower occurrence of problems in comparison to previously published results from a general population, but the importance of actively asking about the patient's experience is demonstrated by the high degree of asymptomatic patients reporting problems on EQ-5D. (c) 2011 Elsevier Ireland Ltd. All rights reserved.
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