Illness perceptions of adults with congenital heart disease and their predictive value for quality of life two years later

Schoormans, Dounya; Mulder, Barbara J.M.; Melle, Joost P. van; Pieper, Petronella G.; Dijk, Arie P.J. van; Sieswerda, Gertjan T.; Hulsbergen-Zwarts, Mariet S.; Plokker, Thijs H. W. M.; Brunninkhuis, Leo G. H.; Vliegen, Hubert W.; Sprangers, Mirjam A. G.

doi:10.1177/1474515113481908

Cited by 55 publications

(73 citation statements)

References 57 publications

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“…To facilitate a successful transition, two important goals have been suggested: to prevent loss of follow-up care and to foster and encourage patients' self-care behaviors34). An accurate knowledge of CHD by patients has been associated with improved psychological functioning and the patients' QoL4,29,35). Although clear insight about their CHD is known to reduce patients' confusion and improve healthy behaviors for dealing with a chronic heart condition29), only 30% of child and adolescent patients indicated good insight into their CHD, and 77% of patients did not know the medical diagnosis of their own CHD, which meant that children and adolescents appeared to be less concerned about their CHD36).…”

Section: Solutions To Improve Psychosocial Function and Qol Of Adolesmentioning

confidence: 99%

Psychosocial adjustment and quality of life of adolescents and adults with congenital heart disease

Kim

2014

Korean J Pediatr

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The incidence of people living with congenital heart disease (CHD) has been increasing every year owing to remarkable advances in surgical and catheter intervention techniques and devices, and improved knowledge of critical care for patients with CHD. However, these patients continue to face physical, psychosocial, and environmental challenges, and a number of studies have shown higher rates of depression and anxiety disorders than the general population. To improve psychosocial functioning and quality of life for adults with CHD, health care providers are recommended to inform CHD patients of an accurate diagnosis, and overall treatment process, beginning in adolescence to facilitate a smooth transition from adolescence to adulthood. Active cooperation with psychiatrists, psychologists, social workers, chaplains, and family members is highly recommended to help CHD patients feel normal and optimistic and to promote good social interactions, close family relationships, and a strong sense of coherence.

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Section: Solutions To Improve Psychosocial Function and Qol Of Adolesmentioning

confidence: 99%

Psychosocial adjustment and quality of life of adolescents and adults with congenital heart disease

Kim

2014

Korean J Pediatr

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“…We found, not surprisingly, that overall symptom burden is greater among patients with disease of great complexity as compared to those with less complex ACHD 9,10 . Some of the specific symptoms responsible for this difference are intuitive.…”

Section: Discussionmentioning

confidence: 60%

Adult Congenital Heart Disease Patients Experience Similar Symptoms of Disease Activity

Cedars

Schmidt

Broberg

et al. 2016

Circ: Cardiovascular Quality and Outcomes

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Background There is a lack of objective data on the symptoms characterizing disease activity among adults with congenital heart disease (ACHD). The purpose of this study was to elicit the most important symptoms from patients across the spectrum of ACHD and to examine whether reported symptoms were similar across the spectrum of ACHD as a foundation for creating a patient-reported outcome measure(s). Methods and Results We constructed a 39-item survey using input from physicians specializing in ACHD to assess the symptoms patients associate with disease activity. Patients (n=124) prospectively completed this survey and the results were analyzed based on underlying anatomy and disease complexity. A confirmatory cohort of patients (n=40) was then recruited prospectively to confirm the validity of the initial data. When grouped based on underlying anatomy, significant differences in disease-related symptom rankings were found for only six of thirty-nine symptoms. Six symptoms were identified which were of particular significance to patients regardless of underlying anatomy. Patients with anatomy of great complexity experienced greater overall symptom severity than those with anatomy of low or moderate complexity, attributable exclusively to higher ranking of 5 symptoms. The second patient cohort had symptom experiences very similar to that of the initial cohort, differing in only 5 of 39 symptoms. Conclusions This study identified 6 symptoms relevant to patients across the spectrum of ACHD, and remarkable homogeneity of patient experience, suggesting that a single disease-specific PRO can be created for quality and outcomes assessments.

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“…Illness perceptions are defined as the cognitive representations and beliefs that patients have about their illness [51] and have also been related to PROs in adults with CHD [52]. The Brief Illness Perception Questionnaire (Brief IPQ) is administered to assess cognitive and emotional representations of illness on a nine-item scale [53].…”

Section: Secondary Outcomesmentioning

confidence: 99%

Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease — International Study (APPROACH-IS): Rationale, design, and methods

Apers

Kovacs

Luyckx

et al. 2015

International Journal of Cardiology

124

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Illness perceptions of adults with congenital heart disease and their predictive value for quality of life two years later

Abstract: Illness perceptions independently predict QoL, suggesting that QoL may be improved by altering patients' beliefs about their illness. For example, increasing patients' knowledge regarding their disease and informing them about treatment opportunities may enhance their QoL.

Cited by 55 publications

References 57 publications

Psychosocial adjustment and quality of life of adolescents and adults with congenital heart disease

Psychosocial adjustment and quality of life of adolescents and adults with congenital heart disease

Adult Congenital Heart Disease Patients Experience Similar Symptoms of Disease Activity

Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease — International Study (APPROACH-IS): Rationale, design, and methods

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