FITHRIANI SALMA MARDHIYAH

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

Introduction

Increase in the number of children with congenital heart disease (CHD) reaching adulthood.

Adult with CHD often has residual lesions that have an adverse effect on daily life.

Previous research: Results are mixed; some studies report that patients with a

CHD have impairments in their QoL, whereas others found that the QoL of patients is similiar to that of their peers.

Association between QoL and demographic characteristics, clinical factors, and psychological factors findings tend to be inconsistent

Background

Inconsistant findings form previous research

Identify modifiable determinants

ILNESS PERCEPTION

To improve QoL

Cognitive representations/beliefspatients have about their illness

- Health behaviour- Emotional reactions

regulates

Affecting QoL

Aims

Patient characteristics

><Ilness

Perception

The independent predictive value of illness perception

for future QoL

to examine:

Methods

845 adult patients

with CHD

Illness perception

Patients characteristi

csQoL

relation with:

Using 3 questionnaire:- Illlness perception (1)

- QoL (2) (after 2 years follow up)

Measurements

1. Clinical Factors Disease complexity:

CONCOR database Functional status:

NYHA class (patient based questionnaire)

2. Illness perception Using IPQ-R (Illness Perception Questionnaire - Revised)

Simple

Moderate

Complex

Emotional representation

Changeability

Coherence

ConsequencyControl

3. QoL

Generic:Short Form

Health Survey-36 (SF-36)

Spesific:TNO/AZL

Adult Quality Of Life-CHD (TAAQOL-

CHD)

Mental Component Summary (MCS):• Vitality• Social function• Role emotional• Mental health

Physical Component Summary (PCS):• Physical function• Role physical• Bodily pain• General health

SymptomsWorriesImpact Cardiac Surveillance

Results

Participants: 1670Eligible patients

1109(66,4%)Filled out

1100follow up

questionnaire sent

Sent baseline questionnaire

2 years later9 patients died

845patients

responded

Results

Aims

Patient characteristics

><Ilness

Perception

The independent predictive value of illness perception

for future QoL

to examine:

1. Relation between patient characteristics & Illness perception

Illness perceptions

Patients Charactheristics

Sex (Males)

Complexity (complete

heart defect)

Functional status (NYHA ↑)

Control ↓↓

Coherence ↓↓

Changeability ↓↓ ↑↑

Consequences ↑↑ ↑↑ ↑↑

Emotional representation

↑↑

2. The independent predictive value of illness perception for future QoL

Patient Charactheristics

QoL

MCS PCS Symptoms

Worries

Males (♂) ↑↑ ↑↑

↑ Age ↑↑ ↓↓

↓ Functional status ↓↓ ↓↓

Illness Perception

↑ Consequences ↓↓ ↓↓ ↓↓

↑ Control ↑↑

↑ Coherence ↑↑

↑ Changeability ↓↓ ↓↓

↑ Negative emotions ↓↓ ↑↑ ↓↓

Discussion

Good illness perception adequate health

behaviour

Severe cases (including complex defect & poor

functional status) poor illness perception

inadequate health behaviour

Clinical implications

Improving illness perception QoL:

Quality of life may be improved by altering illness

perceptions.

Proffesionals should focus on increasing patients

knowledge.

Inform patients about treatment options.

Facilitate psychological counselling to reduce negative

consequences and emotions.

Conclusions

In adults patients with CHD, a complex defect and poor functional status are related to poor illness perceptions.

Poor illness perceptions are predictive of a poor QoL two years later, independent of these patient characteristics.

Patients belief regarding their illness

The functional effect

The received treatment

affecting