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

Moons, Philip; Kovacs, Adrienne H.; Luyckx, Koen; Thomet, Corina; Budts, Werner; Enomoto, Junko; Sluman, Maayke A.; Yang, Hsuan-Chia; Jackson, Jamie L.; Khairy, Paul; Cook, Stephen C.; Subramanyan, Raghavan; Alday, Luis; Eriksen, Katrine; Dellborg, Mikael; Berghammer, Malin; Johansson, Bengt; Mackie, Andrew S.; Menahem, Samuel; Caruana, Maryanne; Veldtman, Gruschen; Soufi, Alexandra; Fernandes, Susan M.; White, Kamila S.; Callus, Edward; Kutty, Shelby; Bulck, Liesbet Van; Apers, Silke

doi:10.1016/j.ijcard.2017.10.064

Cited by 72 publications

(82 citation statements)

References 27 publications

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“…These factors explained 20% of the variance of QoL, indicating that there was still a large portion of the variance that could not be explained. APPROACH‐IS reported that sex, educational level and the complexity of the heart defect were not associated with QoL . The finding that disease complexity did not play a role in predicting QoL could be explained by the fact that we measured QoL from a holistic point of view, instead of a merely functional perspective.…”

Section: Approach‐ismentioning

confidence: 90%

“…Socio‐demographic data were collected by self‐reports and information on medical history was retrieved by chart reviews. Details on the methodology of APPROACH‐IS have been provided in a methods paper , and numerous papers have described findings obtained from this global sample or from patients from specific countries or regions .…”

Section: Approach‐ismentioning

confidence: 99%

“…A number of factors were associated with worse QoL in this large international sample of patients with CHD. These were as follows: older age, job seeking, being unemployed or disabled, never having been married and higher New York Heart Association functional classes, indicating worse functional status . These factors explained 20% of the variance of QoL, indicating that there was still a large portion of the variance that could not be explained.…”

Section: Approach‐ismentioning

confidence: 99%

“…In addition to identify more patient characteristics that could be of relevance, it is worthwhile to explore country‐specific features and healthcare system factors that may explain variances of QoL above and beyond patient qualities. APPROACH‐IS investigated the roles that the level of national happiness , cultural dimensions , standard of living and healthcare system factors played in predicting QoL. These analyses demonstrated that QoL was not related to any of these country‐specific or healthcare system factors .…”

Section: Approach‐ismentioning

confidence: 99%

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Quality‐of‐life research in adult patients with congenital heart disease: current status and the way forward

Moons

Luyckx

2019

Acta Paediatrica

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Over the past four decades, the number of papers on quality of life (QoL) in congenital heart disease (CHD) has grown exponentially. However, firm conclusions have been hard to draw, because conceptual issues occurred and methodological differences prevented direct comparisons of studies. In general, QoL in CHD patients is good and it can be even better than in healthy peers when measured as life satisfaction. When QoL is measured as physical functioning, patients with complex CHD do worse than patients with moderate or mild defects or healthy individuals. APPROACH-IS was a large-scale international project that confirmed international variations in QoL, with Australian patients reporting the best QoL. Poor QoL was predicted by older age, being a job seeker, unemployed or disabled, never having married and those with worse functional status. Perceived illness and religion and spirituality were also significant predictors for QoL. On the other hand, country-specific characteristics and healthcare system factors did not play a significant role in explaining variances in QoL of patients with CHD around the globe. Future studies should rely on a sound conceptual basis, use longitudinal research designs, be conducted in international, multi-centre settings and evaluate interventions that promote patients' QoL.

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Section: Approach‐ismentioning

confidence: 90%

Section: Approach‐ismentioning

confidence: 99%

Section: Approach‐ismentioning

confidence: 99%

Section: Approach‐ismentioning

confidence: 99%

See 2 more Smart Citations

Quality‐of‐life research in adult patients with congenital heart disease: current status and the way forward

Moons

Luyckx

2019

Acta Paediatrica

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“…However, any observed change is highly likely to be multifactorial. Having comorbidities or mental health issues may make a difference for example, as could age, gender, type of cancer, and socioeconomic status as well as time and type of intervention. Secondary aim of this study was therefore to identify potential predictors of (a) increased levels of concern at initial visit and (b) change in severity scores at reassessment.…”

Section: Introductionmentioning

confidence: 99%

Proactive community support tailored to holistic needs: A cohort study

2018

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BackgroundIt is increasingly internationally recognized that a cancer diagnosis impacts on people practically and financially as well as physically and psychologically. It is less clear what to do about this. This study introduces an original community service designed to mitigate this wider impact. Nonclinical “link officers” use holistic needs assessment (HNA) to help newly diagnosed people identify and quantify the severity of their physical, psychological, practical, financial, and social concerns. A care plan is then agreed, usually involving community interventions from partner agencies. Following intervention, assessment is repeated. The primary aim of this study was to establish whether there was a significant difference between initial assessment and follow‐up, postintervention. Secondary aim was to identify potential predictors of increased levels of concern at baseline and follow‐up.MethodPre‐ and postintervention observational cohort study. Paired t test examined the difference in mean (SD) concern severity between baseline and follow‐up. Multiple linear regression models were computed to hypothesize potential predictors of initial concern severity and severity change.ResultsThe service saw 2413 people 2014‐2017. Participants identified average 5.5 (4.7) concerns, financial concerns being most frequent. Mean severity at baseline was 7.12 (out of 10) (2.50), reducing to 3.83 (3.49) post‐treatment, paired t(4454) = 64.68, P < 0.0001, reduction of 3.31 (95% CI 3.21‐3.41). Factors associated with higher initial concern included unemployment and caring responsibilities. Unemployment was also associated with a smaller reduction of concern severity at follow‐up.ConclusionPatient level of concern went from a level associated with specialist referral to a much more manageable level. This original finding is internationally significant because it extends Khera et al's (2017) “provocative idea” that all patients should be screened for financial problems to show that they can be helped with all their concerns. This article describes a successful, transferable model of community care.

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Future Research

Dimopoulos¹,

David²

2018

Heart Failure in Adult Congenital Heart Disease

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

Abstract: This 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.

Cited by 72 publications

References 27 publications

Quality‐of‐life research in adult patients with congenital heart disease: current status and the way forward

Quality‐of‐life research in adult patients with congenital heart disease: current status and the way forward

Proactive community support tailored to holistic needs: A cohort study

Future Research

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