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

Holbein, Christina E.; Fogleman, Nicholas D.; Hommel, Kevin A.; Apers, Silke; Rassart, Jessica; Moons, Philip; Luyckx, Koen; Sluman, Maayke A.; Enomoto, Junko; Johansson, Bengt; Yang, Hsuan-Chia; Dellborg, Mikael; Subramanyan, Raghavan; Jackson, Jamie L.; Budts, Werner; Kovacs, Adrienne H.; Morrison, Stacey; Tomlin, Martha; Gosney, Kathy; Soufi, Alexandra; Eriksen, Katrine; Thomet, Corina; Berghammer, Malin; Alday, Luis; Callus, Edward; Fernandes, Susan M.; Caruana, Maryanne; Menahem, Samuel; Cook, Stephen C.; Rempel, Gwen R.; White, Kamila S.; Khairy, Paul; Kutty, Shelby; Veldtman, Gruschen

doi:10.1111/chd.12583

Cited by 29 publications

(20 citation statements)

References 38 publications

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“…People with a Fontan circulation or other forms of congenital heart disease (CHD) tend to see themselves as more well and less limited than objective evidence would suggest [7,8]. This is important because subjective perceptions are central to quality of life [9][10][11]. A meta-analysis exploring chronic childhood diseases and emotional outcomes showed a small increased risk of emotional difficulties that persisted into early adulthood [12].…”

Section: Challenges Of Having a Chronic Health Conditionmentioning

confidence: 99%

Management of People With a Fontan Circulation: a Cardiac Society of Australia and New Zealand Position statement

Zentner

Celermajer

Gentles

et al. 2020

Heart, Lung and Circulation

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The Fontan circulation describes the circulatory state resulting from an operation in congenital heart disease where systemic venous return is directed to the lungs without an intervening active pumping chamber. As survival increases, so too does recognition of the potential health challenges. This document aims to allow clinicians, people with a Fontan circulation, and their families to benefit from consensus agreement about management of the person with a Fontan circulation. The document was crafted with input from a multidisciplinary group of health care providers as well as individuals with a Fontan circulation and families. It is hoped that the shared common vision of long-term wellbeing will continue to drive improvements in care and quality of life in this patient population and eventually translate into improved survival.

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Section: Challenges Of Having a Chronic Health Conditionmentioning

confidence: 99%

Management of People With a Fontan Circulation: a Cardiac Society of Australia and New Zealand Position statement

Zentner

Celermajer

Gentles

et al. 2020

Heart, Lung and Circulation

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“…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%

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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“…Patients with Fontan circulation might experience an affected quality of life (37). Studies have reported a negatively affected quality of life (37)(38)(39)(40)(41)(42)(43) and reduced exercise performance even in patients without severe complications during surgical procedures and medical follow-ups (23,25,26,30). Also, it has been shown that patients with Fontan circulation have a lower quality of life compared with patients with less severe heart defects (38).…”

Section: Long-term Outcomementioning

confidence: 99%

Impaired lung function in children and adolescents with Fontan circulation may improve after endurance training

et al. 2018

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Fontan patients have a restrictive lung pattern, reduced pulmonary diffusing capacity, and reduced maximal oxygen uptake compared with healthy controls. Endurance training may improve vital capacity in Fontan patients. The normal increase in pulmonary diffusing capacity with age and growth was reduced in Fontan patients, which is concerning. Apart from general health effects, exercise may improve lung function in young Fontan patients and should be encouraged.

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

Cited by 29 publications

References 38 publications

Management of People With a Fontan Circulation: a Cardiac Society of Australia and New Zealand Position statement

Management of People With a Fontan Circulation: a Cardiac Society of Australia and New Zealand Position statement

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

Impaired lung function in children and adolescents with Fontan circulation may improve after endurance training

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