| 1. |
- Goossens, Eva, et al.
(författare)
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Are missed appointments in an outpatient clinic for adults with congenital heart disease the harbinger for care gaps?
- 2022
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Ingår i: European journal of cardiovascular nursing : journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology. - : Oxford University Press (OUP). - 1873-1953. ; 21:2, s. 127-134
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Tidskriftsartikel (refereegranskat)abstract
- Life-long follow-up is vital for patients with congenital heart disease (CHD) to safeguard longevity. Missing scheduled appointments might be prodromal to subsequent care gaps, but our understanding of their occurrence and impact is limited. This study determined the occurrence and predictors of missed appointments (MA), assess its predictive value for care gaps, and explored if MA or care gaps are associated with increased mortality.From 2007 to 2009, the occurrence of MA in 2075 CHD patients was documented at an adult CHD clinic. The frequency of outpatient visits in 1363 adults with moderate to complex CHD was calculated from 2009 to 2012. Patients without a visit were considered to have a care gap. Data on mortality were collected from 2013 to 2017. Missed appointments occurred in 11% of patients and were more common in men [odds ratio (OR) = 1.57; 95% confidence interval (CI): 1.18-2.08], without a history of cardiac procedures (OR = 1.46; 95% CI: 1.08-1.97), and for morning visits (OR = 1.45; 95% CI: 1.10-1.92). Care gaps were identified in 6% of moderate to complex CHD. A MA was significantly associated with an increased likelihood of care gaps (OR = 19.55; 95% CI: 11.92-32.07; R2 = 26.5%). In moderate to complex CHD, no difference in mortality rates was related to the occurrence of discontinued care.The occurrence of MA was related to patients' gender, no history of cardiac interventions, and time of day of the outpatient visits. Care gaps were associated by the preceding MA. No association with increased mortality rates was observed. Interventions reducing missed appointments, such as SMS-reminders prior to visits, need investigation.
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| 2. |
- Janssens, Astrid, et al.
(författare)
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Exploring the relationship between disease-related knowledge and health risk behaviours in young people with congenital heart disease.
- 2016
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Ingår i: European journal of cardiovascular nursing : journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology. - : Oxford University Press (OUP). - 1873-1953. ; 15:4, s. 231-240
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 3. |
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| 4. |
- Moons, Philip, 1968, et al.
(författare)
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Rapid reviews: the pros and cons of an accelerated review process.
- 2021
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Ingår i: European journal of cardiovascular nursing : journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology. - : Oxford University Press (OUP). - 1873-1953. ; 20:5
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Tidskriftsartikel (refereegranskat)abstract
- Although systematic reviews are the method of choice to synthesize scientific evidence, they can take years to complete and publish. Clinicians, managers, and policy-makers often need input from scientific evidence in a more timely and resource-efficient manner. For this purpose, rapid reviews are conducted. Rapid reviews are performed using an accelerated process. However, they should not be less systematic than standard systematic reviews, and the introduction of bias must be avoided. In this article, we describe what rapid reviews are, present their characteristics, give some examples, highlight potential pitfalls, and draw attention to the importance of evidence summaries in order to facilitate adoption in clinical decision-making.
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| 5. |
- Moons, Philip, 1968, et al.
(författare)
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The COVID-19 pandemic as experienced by adults with congenital heart disease from Belgium, Norway, and South Korea: impact on life domains, patient-reported outcomes, and experiences with care.
- 2022
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Ingår i: European journal of cardiovascular nursing. - : Oxford University Press (OUP). - 1873-1953 .- 1474-5151. ; 21:6, s. 620-629
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Tidskriftsartikel (refereegranskat)abstract
- The coronavirus disease-2019 (COVID-19) pandemic poses significant challenges to many groups within societies, and especially for people with chronic health conditions. It is, however, unknown whether and how the pandemic has thus far affected the physical and mental health of patient populations. Therefore, we investigated how the pandemic affected the lives of adults with congenital heart disease (CHD), compared pre- and peri-pandemic patient-reported outcome measures (PROMs) and a patient-reported experience measure (PREM), and investigated whether having had COVID-19 impacted pre-/peri-pandemic differences of the PROMs and PREM.As part of the ongoing APPROACH-IS II project, we longitudinally surveyed 716 adults with CHD from Belgium, Norway, and South Korea. Pre-pandemic measures were administered from August 2019 to February 2020 and the peri-pandemic surveys were completed September 2020-April 2021. The majority of patients indicated that their social lives (80%), mental health (58%), and professional lives/education (51%) were negatively impacted by the pandemic. Patients felt worried (65%), were afraid (55%), reported the pandemic felt 'close' to them (53%), and were stressed (52%). However, differences between pre- and peri-pandemic scores on the PROMs and PREM were negligibly small (Cohen's d < 0.20). Across measures, 5.8-15.8% of patients demonstrated changes (improved or worsened scores) that exceeded the minimal clinically important difference. There were no difference-in-differences for PROMs and PREM between patients who did vs. did not have COVID-19.Although the COVID-19 pandemic has been disruptive in many ways, pre- to peri-pandemic changes in PROMs and PREM of adults with CHD were negligibly small.
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| 6. |
- Na, Inwon, et al.
(författare)
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Absence from work or school in young adults with congenital heart disease: is illness identity associated with absenteeism?
- 2022
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Ingår i: European journal of cardiovascular nursing : journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology. - : Oxford University Press (OUP). - 1873-1953. ; 21:5
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Tidskriftsartikel (refereegranskat)abstract
- Absence from work or school in patients with congenital heart disease (CHD) is an understudied domain. Illness identity, which is the degree to which a chronic illness is integrated into one's identity, could be hypothesized to be a predictor for absenteeism. This study determined the proportion of young adults with CHD absent from work or school and examined if illness identity dimensions were related to absenteeism.In a cross-sectional study, we included 255 patients with CHD. Data on absence from work or school over the past 12 months were obtained using self-report. The Illness Identity Questionnaire was used, which comprises four illness identity dimensions: rejection, engulfment, acceptance, and enrichment. Linear models with doubly robust estimations were computed after groups were balanced using propensity weighting. Absence from work/school occurred in 69% of young adults with CHD. Absence because of CHD specifically was present in 15% of the patients. Engulfment was significantly related to both all-cause absence and absence for CHD reasons.Patients who strongly define themselves in terms of their heart disease were more likely to be absent from work or school than those who did not. If this finding can be confirmed in future research, it has the potential to be a target for intervention to influence work/school absence.
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| 9. |
- Van Bulck, Liesbet, et al.
(författare)
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Patient-reported outcomes of adults with congenital heart disease from eight European countries : scrutinising the association with healthcare system performance
- 2019
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Ingår i: European Journal of Cardiovascular Nursing. - : Sage Publications. - 1474-5151 .- 1873-1953. ; 18:6, s. 465-473
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Tidskriftsartikel (refereegranskat)abstract
- Background: Inter-country variation in patient-reported outcomes of adults with congenital heart disease has been observed. Country-specific characteristics may play a role. A previous study found an association between healthcare system performance and patient-reported outcomes. However, it remains unknown which specific components of the countries’ healthcare system performance are of importance for patient-reported outcomes.Aims: The aim of this study was to investigate the relationship between components of healthcare system performance and patient-reported outcomes in a large sample of adults with congenital heart disease.Methods: A total of 1591 adults with congenital heart disease (median age 34 years; 51% men; 32% simple, 48% moderate and 20% complex defects) from eight European countries were included in this cross-sectional study. The following patient-reported outcomes were measured: perceived physical and mental health, psychological distress, health behaviours and quality of life. The Euro Health Consumer Index 2015 and the Euro Heart Index 2016 were used as measures of healthcare system performance. General linear mixed models were conducted, adjusting for patient-specific variables and unmeasured country differences.Results: Health risk behaviours were associated with the Euro Health Consumer Index subdomains about patient rights and information, health outcomes and financing and access to pharmaceuticals. Perceived physical health was associated with the Euro Health Consumer Index subdomain about prevention of chronic diseases. Subscales of the Euro Heart Index were not associated with patient-reported outcomes.Conclusion: Several features of healthcare system performance are associated with perceived physical health and health risk behaviour in adults with congenital heart disease. Before recommendations for policy-makers and clinicians can be conducted, future research ought to investigate the impact of the healthcare system performance on outcomes further.
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