Illness perception of adults with congenital

heart disease and their predictive value for

quality of life two years later

FITHRIANI SALMA MARDHIYAH

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/beliefs
patients have about their illness

regulates
- Health behaviour
- Emotional
reactions

Affecting QoL

Aims
to examine:

Patient
characteristics
><
Ilness Perception

The independent
predictive value of
illness perception for
future QoL

Methods
845 adult
patients with
CHD
Using 3 questionnaire:
- Illlness perception (1)
- QoL (2) (after 2 years follow up)
Illness
perception
relation with:

Patients
characteristics

QoL

Measurements
1.

Clinical Factors

2.

Simple
Disease complexity:
CONCOR database
Moderate
Functional status:
Complex
NYHA class (patient based questionnaire)

Illness perception

Using IPQ-R (Illness Perception Questionnaire - Revised)

Consequency
Control
Coherence
Changeability
Emotional representation

Mental Component Summary

(MCS):

3. QoL
Generic:
Short Form
Health Survey-36
(SF-36)

Spesific:
TNO/AZL Adult
Quality Of LifeCHD (TAAQOLCHD)

Vitality
Social function
Role emotional
Mental health

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

Symptoms
Worries
Impact Cardiac Surveillance

Results
Participants:

1670
Eligible
patients

Sent baseline questionnaire

1109
(66,4%)
Filled out
2 years later
9 patients died

1100
follow up
questionnaire sent

845
patients
responded

Results

Aims
to examine:

Patient
characteristics
><
Ilness Perception

The independent
predictive value of
illness perception for
future QoL

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

Males ()

PCS

Symptoms

Age

Functional status

Worries

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

behaviour

inadequate health

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

affecting
The received treatment