Quality

of

life

in

couples

living

with

Huntington

's

disease

the

role

of

patients

and

partners

illness

perceptions

Research

suggests

that

chronically

ill

patients

and

their

partners

perceive

illness

differently

and

that

these

differences

have

a

negative

impact

on

patients

quality

of

life

-LRB-

QoL

-RRB-

This

study

assessed

whether

illness

perceptions

of

patients

with

Huntington

's

disease

-LRB-

HD

-RRB-

differ

from

those

of

their

partners

and

examined

whether

spousal

illness

perceptions

are

important

for

the

QoL

of

the

couples

-LRB-

n

couples

-RRB-

Partners

reported

that

their

HD-patient

spouses

suffered

more

symptoms

and

experienced

less

control

than

the

patients

themselves

reported

Illness

perceptions

of

patients

and

partners

correlated

significantly

with

patient

QoL

Partners

beliefs

in

a

long

duration

of

the

patients

illness

and

less

belief

in

cure

were

associated

with

patient

vitality

scores

Suggestions

for

future

research

emphasize

the

importance

of

qualitative

research

approaches

in

combination

with

cognitive-behavioural

approaches

Quality

of

life

research

is

increasingly

being

directed

at

both

the

impact

of

the

social

environment

on

the

quality

of

life

-LRB-

QoL

-RRB-

of

chronically

ill

individuals

and

at

the

toll

the

illness

exacts

on

the

QoL

of

close

family

members

-LSB-

-RSB-

One

of

the

most

influential

members

of

the

social

network

of

chronically

ill

individuals

is

the

spouse

Research

conducted

in

chronically

ill

individuals

and

their

healthy

spouses

revealed

that

the

spouses

role

problems

-LSB-

-RSB-

their

unsupportive

behaviour

-LSB-

-RSB-

and

the

marital

relationship

itself

-LSB-

-RSB-

are

some

of

the

factors

influencing

patients

QoL

Studies

examining

adaptation

in

caregivers

have

identified

negative

social

support

-LSB-

-RSB-

patients

cognitive

impairment

-LSB-

-RSB-

and

the

caregivers

overestimation

of

the

patient

's

functional

disabilities

-LSB-

-RSB-

as

some

of

the

factors

influencing

the

partners

QoL

Recent

findings

suggest

that

patients

QoL

is

also

dependent

on

beliefs

fostered

by

the

social

environment

regarding

the

patient

's

illness

Illness

beliefs

or

illness

perceptions

can

be

subdivided

into

five

components

identity

-LRB-

the

label

the

patient

places

on

the

illness

and

the

symptoms

he/she

experiences

-RRB-

cause

-LRB-

the

personal

ideas

patients

have

about

the

cause

of

their

illness

-RRB-

timeline

-LRB-

the

duration

of

the

illness

according

to

the

patient

-RRB-

consequences

-LRB-

the

expected

effects

and

outcome

of

the

illness

-RRB-

and

cure/control

-LRB-

the

curability

or

controllability

of

the

illness

according

to

the

patient

-RRB-

-LSB-

-RSB-

In

the

area

of

physical

health

problems

illness

perceptions

have

been

found

to

be

related

to

the

ways

patients

react

and

cope

with

their

illness

A

strong

illness

identity

combined

with

a

perceived

long

duration

and

perceived

more

severe

consequences

of

the

disease

for

daily

life

have

been

associated

with

poor

physical

and

psychological

well-being

Stronger

beliefs

regarding

the

curability

or

controllability

of

a

disease

have

been

found

to

have

positive

effects

on

patients

QoL

-LSB-

-RSB-

Research

shows

that

illness

beliefs

of

spouses

significantly

affect

patients

beliefs

the

coping

mechanisms

they

adopt

to

deal

with

their

disease

and

ultimately

their

functioning

and

well-being

-LSB-

-RSB-

Heijmans

and

colleagues

found

that

dissimilarities

between

the

illness

perceptions

of

chronically

ill

patients

-LRB-

patients

with

Addison

's

disease

and

patients

with

Chronic

Fatigue

Syndrome

-RRB-

and

those

of

their

healthy

spouses

were

associated

with

higher

impairments

in

predicted

patients

adaptive

outcome

-LSB-

-RSB-

In

another

study

Figueiras

and

Weinman

explored

whether

the

degree

of

similarity

in

patients

and

spouses

illness

perceptions

was

related

to

recovery

following

myocardial

infarction

-LSB-

-RSB-

Few

studies

have

focused

on

the

role

of

illness

perceptions

for

caregiver

outcomes

and

have

examined

the

role

of

patients

illness

perceptions

on

the

QoL

of

their

healthy

partners

Barrowclough

et

al.

-LSB-

-RSB-

and

Fortune

et

al.

-LSB-

-RSB-

studied

illness

perceptions

in

carers

of

schizophrenia

patients

Their

findings

suggest

that

carer

perceptions

about

identity

consequences

and

control

may

have

important

implications

for

carer

outcomes

in

schizophrenia

In

this

study

we

will

focus

on

Huntington

's

disease

-LRB-

HD

-RRB-

which

is

an

inherited

neurodegenerative

disorder

characterized

by

clearly

defined

clinical

features

such

as

involuntary

movements

and

hypokinesia

dementia

and

personality

changes

The

first

symptoms

of

HD

typically

manifest

between

the

ages

of

and

and

the

disease

has

a

mean

duration

of

years

-LSB-

-RSB-

At

present

there

is

no

cure

for

HD

Little

empirical

data

has

been

gathered

on

the

psychosocial

aspects

of

living

with

HD

but

some

research

findings

suggest

that

HD

contributes

to

marital

breakdown

-LSB-

-RSB-

One

of

the

most

important

reasons

for

this

is

believed

to

be

the

changes

HD

brings

about

in

the

relationship

Spouses

of

HD

patients

often

consider

their

partners

to

be

lost

-LSB-

-RSB-

particularly

when

dementia

and

changes

in

personality

and

behaviour

develop

-LSB-

-RSB-

In

addition

over

time

the

spouse

takes

on

an

increasing

nursing

role

which

creates

a

psychological

distance

between

the

patient

and

his/her

spouse

-LSB-

-RSB-

HD

greatly

impacts

the

patients

physical

and

psychosocial

well-being

-LSB-

-RSB-

and

places

a

heavy

burden

on

families

-LSB-

-RSB-

Interestingly

some

research

has

indicated

that

there

is

a

discrepancy

between

the

aspects

of

HD

the

patient

finds

most

disturbing

and

those

the

spouse

or

partner

finds

most

disturbing

Partners

are

most

disturbed

by

mental

and

personality

changes

in

the

patients

-LSB-

-RSB-

In

all

studies

examining

the

role

of

spousal

illness

perceptions

for

patient

outcomes

researchers

have

concentrated

on

the

degree

of

similarity

dissimilarity

in

patients

and

spouses

illness

perceptions

as

a

predictor

of

patient

outcome

thereby

ignoring

alternative

possible

relationship

patterns

between

spouses

illness

beliefs

and

patient

outcome

Results

from

Figueiras

and

Weinman

-LSB-

-RSB-

showed

that

not

only

similar

positive

perceptions

in

couples

but

also

conflicting

representations

were

predictive

of

lower

levels

of

disability

-LRB-

as

compared

to

similar

negative

perceptions

-RRB-

This

suggests

that

it

might

be

more

important

that

at

least

one

member

of

a

couple

has

positive

perceptions

However

the

results

obtained

in

the

Heijmans

et

al.

-LSB-

-RSB-

study

show

that

better

patient

adjustment

in

Addison

's

Disease

is

related

to

spouses

negative

perceptions

about

timeline

while

better

patient

adjustment

in

Chronic

Fatigue

Syndrome

is

related

to

spouses

positive

perceptions

of

a

short

illness

duration

From

these

studies

it

seems

that

both

contrasting

and

concordant

perceptions

in

couples

can

be

related

to

better

patient

adjustment

and

further

study

is

needed

to

evaluate

the

extent

to

which

spouses

illness

perceptions

can

influence

outcomes

which

have

been

found

to

be

related

to

the

patient

's

own

perceptions

Thus

the

first

aim

of

this

study

was

to

examine

if

patients

and

partners

hold

similar

views

about

HD

Our

second

aim

was

to

compare

the

relationship

patterns

between

patients

and

partners

own

illness

perceptions

and

QoL

The

third

aim

was

to

contribute

to

the

understanding

of

the

cognitive

factors

related

to

QoL

in

couples

dealing

with

HD

by

examining

which

spousal

illness

beliefs

are

important

in

both

patients

and

partners

quality

of

life

Method

Sample

and

procedure

Participants

in

this

study

were

couples

-LRB-

HD

patients

and

their

partners

-RRB-

who

were

recruited

from

the

outpatient

clinic

of

the

Department

of

Neurology

of

the

Leiden

University

Medical

Centre

-LRB-

LUMC

n

couples

-RRB-

and

the

Dutch

Huntington

Association

-LRB-

n

couples

-RRB-

HD

patients

from

the

LUMC

were

selected

if

they

had

received

a

clinical

diagnosis

of

HD

at

least

year

prior

to

commencement

of

the

study

and

if

they

were

capable

-LRB-

mentally

emotionally

and

physically

-RRB-

of

participating

in

an

interview

lasting

approximately

h

The

selected

patients

-LRB-

n

-RRB-

and

their

spouses

were

invited

by

post

to

participate

A

total

of

patients

and

spouses

agreed

to

participate

The

main

reason

for

not

participating

were

the

verbal

communication

difficulties

that

patients

were

experiencing

and

having

participated

in

other

research

projects

before

Non-participants

did

not

differ

from

participants

with

respect

to

age

sex

or

duration

of

HD

HD

patients

and

their

spouses

recruited

from

the

Dutch

Huntington

Association

were

invited

to

participate

by

means

of

a

letter

sent

to

all

the

members

of

the

association

-LRB-

n

-RRB-

The

selection

criteria

for

participation

were

the

same

as

those

applied

to

the

patients

selected

from

the

Department

of

Neurology

of

the

LUMC

A

total

of

patients

and

spouses

agreed

to

participate

No

information

could

be

gathered

on

non-participants

due

to

the

fact

that

members

of

the

Dutch

Huntington

Association

are

not

registered

on

the

basis

of

their

patient

status

Members

include

HD

patients

and

their

partners

as

well

as

their

family

members

friends

and

researchers

in

the

field

of

HD

A

total

of

couples

-LRB-

married

or

living

together

-RRB-

were

identified

Patients

and

their

partners

were

interviewed

separately

at

their

homes

by

a

psychologist

Measures

Demographic

variables

HD

patients

and

their

partners

were

asked

their

age

sex

marital

status

the

duration

of

their

relationship

number

of

children

their

employment

status

and

the

duration

of

HD

Unified

Huntington

Disease

Rating

Scale

-LSB-

-RSB-

We

used

the

motor

section

of

the

UHDRS

to

assess

HD

patients

motor

performance

The

motor

section

is

composed

of

items

rating

ocular

motor

function

dysarthria

chorea

dystonia

gait

and

postural

stability

The

Total

Motor

Score

-LRB-

TMS

-RRB-

is

the

sum

of

all

the

individual

items

higher

scores

indicating

worse

motor

performance

-LRB-

maximum

score

-RRB-

Mini-Mental

State

-LSB-

-RSB-

We

used

this

scale

to

assess

HD

patients

cognitive

performance

It

comprises

items

covering

a

number

of

cognitive

domains

including

orientation

registration

attention

memory

language

and

visuo-constructional

abilities

The

maximum

score

is

lower

scores

indicating

worse

performance

Scores

of

or

less

have

been

associated

with

dementia

delirium

schizophrenia

or

affective

disorder

-LSB-

-RSB-

The

Illness

Perception

Questionnaire

-LSB-

-RSB-

This

questionnaire

was

used

to

assess

the

illness

perceptions

of

HD

patients

and

those

of

their

partners

-LRB-

not

yet

validated

in

Dutch

-RRB-

The

latter

were

interviewed

by

means

of

a

partner-version

of

the

IPQ

-LSB-

-RSB-

The

IPQ

consists

of

the

following

five

subscales

Identity

Timeline

Cause

Consequences

and

Cure/Control

In

this

study

we

divided

the

last

subscale

into

Cure

and

Control

thus

creating

a

sixth

scale

This

is

in

line

with

current

revisions

of

the

IPQ

in

which

these

scales

are

generally

separated

-LSB-

-RSB-

The

identity

scale

was

composed

of

items

each

corresponding

to

a

symptom

commonly

reported

in

HD

Patients

are

asked

to

rate

whether

or

not

they

have

experienced

each

symptom

since

their

illness

began

and

if

they

believe

the

symptom

to

be

specifically

related

to

their

illness

-LRB-

yes

or

no

-RRB-

Partners

were

asked

whether

or

not

their

partner

-LRB-

the

patient

-RRB-

had

experienced

each

symptom

since

onset

of

their

illness

and

to

report

if

they

believed

the

symptom

to

be

specifically

related

to

their

partners

illness

-LRB-

yes

or

no

-RRB-

The

summed

yes-rated

items

on

the

second

questions

were

divided

by

the

number

of

items

to

form

the

illness

identity

scale

with

higher

scores

indicating

a

stronger

belief

that

the

experienced

symptoms

are

part

of

the

patient

's

illness

Cronbach

's

alpha

for

patients

and

partners

was

and

respectively

For

the

remaining

scales

patients

and

their

partners

were

asked

to

indicate

whether

they

agreed

with

statements

on

a

five-point

scale

ranging

from

strongly

agree

to

strongly

disagree

The

Timeline

scale

contained

two

statements

about

the

perceived

duration

of

the

disease

with

high

scores

indicating

strong

beliefs

in

a

chronic

long-term

disease

Cronbach

's

alpha

for

patients

and

partners

was

and

respectively

Consequences

consisted

of

five

items

assessing

beliefs

about

the

impact

of

HD

on

everyday

life

High

scores

indicate

stronger

beliefs

in

serious

consequences

of

the

disease

Cronbach

's

alpha

for

patients

and

partners

was

and

respectively

High

scores

on

the

Cure

scale

-LRB-

two

items

-RRB-

indicate

strong

beliefs

in

the

effectiveness

of

treatment

Cronbach

's

alpha

for

patients

and

partners

was

and

respectively

Control

contained

two

items

pertaining

to

the

degree

to

which

patients

and

partners

believe

they

have

the

ability

to

influence

the

course

of

illness

Cronbach

's

alpha

for

patients

and

partners

was

and

respectively

The

weight

of

all

the

items

per

scale

were

summed

and

divided

by

the

number

of

items

with

the

exception

of

those

of

the

Cause

subscale

Each

item

in

this

subscale

was

considered

individually

because

each

causal

item

represents

a

specific

causal

belief

The

Medical

Outcome

Study

Short

Form

Health

Survey

-LSB-

-RSB-

We

assessed

the

QoL

of

HD

patients

and

the

QoL

of

partners

by

means

of

seven

subscales

of

the

MOS

-LRB-

Physical

functioning

Role

functioning-physical

General

health

Vitality

Social

functioning

Role

functioning-emotional

and

Mental

health

-RRB-

The

raw

scores

are

transformed

in

order

to

obtain

a

scale

with

higher

scores

indicating

a

better

outcome

Analysis

plan

First

the

samples

of

HD

patients

and

partners

from

the

outpatient

clinic

and

the

Dutch

Huntington

Association

involved

in

this

study

were

compared

for

demographic

and

illness

related

variables

-LRB-

age

sex

marital

status

duration

of

the

relationship

number

of

children

employment

status

duration

of

HD

patients

TMS

and

patients

scores

on

the

MMS

-RRB-

by

means

of

t-tests

To

examine

the

extent

of

-LRB-

dis

-RRB-

agreement

that

HD

patients

and

their

partners

held

with

regard

to

their

beliefs

about

HD

Pearson

correlations

and

paired

sample

t-tests

were

computed

To

assess

whether

spousal

illness

perceptions

are

related

to

patients

and

partners

QoL

we

conducted

hierarchical

regression

analyses

with

scores

on

the

MOS

as

criteria

For

patients

illness

related

variables

-LRB-

disease

duration

TMS

and

MMS

scores

-RRB-

were

entered

as

control

variables

prior

to

the

steps

containing

the

patients

and

partners

scores

on

the

IPQ

-LRB-

step

and

respectively

-RRB-

For

partners

parallel

analyses

were

conducted

but

no

control

variables

were

entered

The

variables

for

the

regression

analyses

were

selected

based

on

an

examination

of

bivariate

correlations

between

the

illness

perception

dimensions

and

the

QoL

scales

Results

Sample

characteristics

Couples

recruited

from

the

Department

of

Neurology

of

the

LUMC

did

not

differ

significantly

in

demographic

or

illness

related

variables

from

couples

from

the

Dutch

Huntington

Association

Further

analyses

were

thus

conducted

on

the

combined

data

In

total

HD

patients

-LRB-

males

females

-RRB-

and

their

partners

-LRB-

males

females

-RRB-

were

included

in

this

study

The

mean

age

of

both

patients

and

partners

was

years

-LRB-

SD

-RRB-

Forty-seven

couples

were

married

and

four

were

living

together

The

mean

duration

of

the

relationship

was

years

-LRB-

range

years

-RRB-

and

the

mean

number

of

children

was

-LRB-

range

-RRB-

Eight

couples

did

not

have

children

Thirty-nine

patients

-LRB-

-RRB-

were

unemployed

of

which

-LRB-

males

females

-RRB-

stopped

working

because

of

HD

whereas

-LRB-

males

females

-RRB-

were

still

working

and

-LRB-

males

-RRB-

were

retired

and

receiving

pension

Thirty-four

partners

-LRB-

males

females

-RRB-

were

employed

-LRB-

-RRB-

were

unemployed

-LRB-

for

different

reasons

including

marriage

and

childbearing

females

had

never

had

gainful

employment

-RRB-

and

-LRB-

males

-RRB-

were

retired

and

receiving

a

pension

The

mean

duration

of

HD

was

years

-LRB-

SD

range

-RRB-

Patients

mean

Total

Motor

Score

-LRB-

TMS

-RRB-

was

-LRB-

SD

-RRB-

and

their

mean

score

on

the

MMS

was

-LRB-

SD

-RRB-

Patient-partner

differences

in

illness

perceptions

HD

patients

and

their

partners

did

not

differ

significantly

on

the

Timeline

Consequences

Cure

or

Cause

subscales

of

the

IPQ

-LRB-

see

Table

-RRB-

Both

groups

of

respondents

reported

perceiving

HD

as

having

a

long

duration

and

having

many

consequences

for

their

daily

lives

without

either

of

them

believing

in

a

cure

for

HD

Patients

and

partners

-LRB-

with

the

exception

of

four

patients

and

one

partner

-RRB-

attributed

HD

to

genetic

causes

Six

HD

patients

-LRB-

-RRB-

reported

believing

that

stress

was

an

important

contributing

factor

to

the

development

of

the

symptoms

of

HD

they

were

experiencing

Table

standard

deviations

-LRB-

SD

-RRB-

correlations

and

t-test

statistics

comparing

Huntington

's

Disease

-LRB-

HD

-RRB-

patients

and

their

partners

on

the

Illness

Perception

Questionnaire

-LRB-

IPQ

-RRB-

IPQ

subscalesHD

patientsPartnersPatient-partner

correlation

coefficientaPatient-partner

differencebMean

-LRB-

SD

-RRB-

Mean

-LRB-

SD

-RRB-

tIdentity

-LRB-

-RRB-

-LRB-

-RRB-

-LRB-

-RRB-

-LRB-

-RRB-

-LRB-

-RRB-

-LRB-

-RRB-

-LRB-

-RRB-

-LRB-

-RRB-

-LRB-

-RRB-

-LRB-

-RRB-

aPearson

correlation

b

Paired

t-test

P

P

P

Partners

reported

that

the

HD

patients

were

suffering

from

significantly

more

symptoms

-LRB-

on

the

Identity

subscale

-RRB-

of

HD

than

the

patients

did

themselves

and

reported

experiencing

significantly

less

control

over

HD

than

the

patients

did

Correlations

between

illness

perceptions

and

QoL

Tables

and

display

the

bivariate

correlations

between

the

study

variables

As

expected

examination

of

the

correlations

between

patients

and

partners

illness

perceptions

and

patients

QoL

-LRB-

presented

in

Table

-RRB-

shows

that

patients

QoL

was

most

strongly

associated

with

their

own

illness

perceptions

A

higher

QOL

correlated

with

a

less

strong

illness

identity

a

longer

perceived

illness

-LRB-

and

thus

life

-RRB-

duration

less

perceived

consequences

more

control

and

less

belief

in

treatment

With

regard

to

partners

perceptions

the

same

associations

-LRB-

albeit

fewer

-RRB-

were

found

with

the

exception

of

partners

cure

perceptions

Partner

but

not

patient

belief

in

cure

through

treatment

was

significantly

related

to

patients

vitality

and

social

functioning

ratings

Also

partners

identity

and

consequences

perceptions

were

not

significantly

related

to

patients

vitality

social

functioning

and

mental

health

ratings

Except

for

the

MOS

subscales

Role

Functioning

emotional

and

Mental

Health

illness

perceptions

of

both

patients

and

partners

correlated

significantly

with

patient

QoL

Thus

regression

analyses

were

conducted

on

the

remaining

MOS

subscales

including

only

the

illness

perceptions

dimensions

that

correlated

significantly

with

QoL

Table

correlations

between

Illness

Perceptions

-LRB-

IPQ

-RRB-

and

patients

QoL

-LRB-

MOS

-RRB-

IPQ

patientsIPQ

partnersIdentityTimelineConsequencesControlCureIdentityTimelineConsequencesControlCureMOS

subscalesPhysical

functioning

Role

functioning

-LRB-

physical

-RRB-

General

health

Vitality

Social

functioning

Role

functioning

-LRB-

emotional

-RRB-

Mental

health

Note

Only

significant

correlations

are

depicted

P

P

P

Bivariate

correlations

between

illness

perceptions

and

partners

QoL

are

presented

in

Table

The

quality

of

life

of

partners

was

associated

with

their

own

beliefs

about

the

patients

illness

with

a

stronger

belief

in

a

long

duration

of

the

patients

illness

being

related

to

better

physical

functioning

and

more

vitality

and

less

perceived

consequences

being

related

to

better

physical

role

functioning

more

vitality

and

to

better

mental

health

Partners

vitality

and

mental

health

were

also

associated

with

illness

perceptions

of

patients

Stronger

patient

beliefs

in

control

over

the

illness

and

less

serious

perceived

consequences

were

related

to

better

partner

QoL

Interestingly

the

only

significant

correlations

between

partners

ratings

of

general

health

and

emotional

role

functioning

and

illness

perceptions

were

correlations

with

patient

beliefs

in

control

over

the

illness

Table

correlations

between

Partners

and

Patients

Illness

Perceptions

-LRB-

IPQ

-RRB-

and

Partners

QoL

-LRB-

MOS

-RRB-

IPQ

partnersIPQ

patientsIdentityTimelineConsequencesControlCureIdentityTimelineConsequencesControlCureMOS

subscalesPhysical

functioning

Role

functioning

-LRB-

physical

-RRB-

General

health

Vitality

Social

functioningRole

functioning

-LRB-

emotional

-RRB-

Mental

health

Note

Only

significant

correlations

are

depicted

P

P

P

Importance

of

spousal

illness

perceptions

for

patients

QoL

To

determine

the

relative

extent

that

partners

illness

perceptions

are

predictive

of

patients

QoL

hierarchical

stepwise

multiple

regression

analyses

were

conducted

for

patients

physical

functioning

role

functioning

-LRB-

physical

-RRB-

general

health

vitality

and

social

functioning

The

results

of

the

regressions

are

summarized

in

Table

After

controlling

for

patients

illness

related

variables

and

their

own

scores

on

the

IPQ

partners

IPQ

scores

added

a

significant

amount

of

explained

variance

-LRB-

-RRB-

to

patient

scores

on

the

Vitality

subscale

only

A

stronger

partner

belief

in

a

long

duration

of

the

patients

illness

-LRB-

ß

P

-RRB-

and

less

belief

in

cure

through

treatment

-LRB-

ß

P

-RRB-

both

added

to

the

prediction

of

higher

patient

vitality

Table

regressions

examining

if

spousal

illness

perceptions

explain

additional

variance

in

patients

QoLStep

and

variablesAdj

R

²

R

²

changeF

for

R

²

changeMOS

physical

Control

variablesa

Illness

perceptions

-LRB-

patient

-RRB-

identity

timeline

consequences

control

cure

Illness

perceptions

-LRB-

partner

-RRB-

identity

timeline

consequences

control

cure

MOS

role

functioning

-LRB-

physical

-RRB-

Control

variablesa

Illness

perceptions

-LRB-

patient

-RRB-

cure

Illness

perceptions

-LRB-

partner

-RRB-

cure

MOS

general

Control

variablesa

Illness

perceptions

-LRB-

patient

-RRB-

identity

consequences

Illness

perceptions

-LRB-

partner

-RRB-

identity

MOS

Control

variablesa

Illness

perceptions

-LRB-

patient

-RRB-

identity

timeline

consequences

Illness

perceptions

-LRB-

partner

-RRB-

timeline

cure

MOS

social

Control

variablesa

Illness

perceptions

-LRB-

patient

-RRB-

identity

consequences

Illness

perceptions

-LRB-

partner

-RRB-

cure

aDisease

duration

TMS

and

MMS

scores

P

P

P

The

variance

in

patients

scores

on

the

other

subscales

of

the

MOS

was

explained

mainly

by

patients

own

IPQ

scores

with

the

amount

of

added

explained

variance

ranging

from

to

Less

perceived

consequences

a

less

strong

illness

identity

more

control

and

less

belief

in

treatment

contributed

significantly

to

better

QoL

Importance

of

patients

illness

perceptions

for

partners

QoL

To

determine

the

relative

extent

that

patients

illness

perceptions

are

predictive

of

partners

QoL

hierarchical

stepwise

multiple

regression

analyses

were

conducted

for

partners

vitality

and

mental

health

The

results

of

the

regressions

are

summarized

in

Table

Patients

IPQ

scores

added

a

significant

amount

of

explained

variance

-LRB-

-RRB-

to

partner

scores

on

the

Vitality

subscale

only

Stronger

patient

beliefs

in

control

over

the

illness

-LRB-

ß

P

-RRB-

added

to

the

prediction

of

higher

partner

vitality

Table

regressions

examining

if

spousal

illness

perceptions

explain

additional

variance

in

partners

QoLStep

and

variablesAdj

R

²

R

²

changeF

for

R

²

changeMOS

Illness

perceptions

-LRB-

partner

-RRB-

timeline

consequences

Illness

perceptions

-LRB-

patient

-RRB-

control

MOS

mental

Illness

perceptions

-LRB-

partner

-RRB-

consequences

Illness

perceptions

-LRB-

patient

-RRB-

consequences

P

P

P

Most

variance

was

explained

by

partners

own

IPQ

scores

with

amount

of

explained

variance

ranging

from

to

A

longer

perceived

illness

-LRB-

and

thus

life

-RRB-

duration

and

less

perceived

consequences

contributed

significantly

to

better

QoL

Discussion

Our

results

indicate

that

HD

patients

and

their

partners

did

not

differ

significantly

in

their

beliefs

regarding

the

duration

consequences

causality

and

curability

of

the

disease

HD

was

attributed

in

all

but

four

HD

patients

and

one

partner

to

a

genetic

cause

There

were

however

significant

differences

between

the

illness

identity

of

HD

patients

and

that

of

their

partners

Partners

attributed

significantly

more

symptoms

to

HD

than

patients

In

addition

HD

patients

and

their

partners

differed

significantly

in

the

degree

of

control

they

believed

they

had

over

the

disease

process

HD

patients

perceived

their

disease

as

being

more

controllable

than

their

partners

In

general

as

was

the

case

in

couples

dealing

with

Addison

's

disease

-LSB-

-RSB-

patients

held

more

positive

beliefs

about

HD

than

their

partners

did

Examining

the

relationships

between

spousal

illness

perceptions

and

patients

QoL

the

results

indicate

that

of

the

partners

perceptions

-LRB-

whether

consonant

or

dissimilar

-RRB-

are

relevant

in

being

associated

with

patients

quality

of

life

in

the

areas

of

mental

health

and

emotional

role

functioning

Partners

identity

and

consequences

perceptions

-LRB-

whether

consonant

or

dissimilar

-RRB-

are

not

associated

with

patients

quality

of

life

in

the

areas

of

social

functioning

and

vitality

Partners

consequences

perceptions

-LRB-

whether

consonant

or

dissimilar

-RRB-

are

not

relevant

for

patients

quality

of

life

in

the

area

of

general

health

Also

less

partner

-LRB-

but

not

patient

-RRB-

belief

in

cure

through

treatment

was

related

to

higher

patients

vitality

and

social

functioning

ratings

Thus

our

results

suggest

that

except

for

patients

physical

functioning

it

is

of

limited

use

to

investigate

-LRB-

only

-RRB-

dissimilarities

in

illness

perceptions

of

patients

and

partners

as

determinants

of

patient

outcomes

in

HD

With

regard

to

the

third

aim

of

this

study

although

patients

and

partners

own

illness

perceptions

explained

the

largest

amount

of

variance

in

QoL

spousal

illness

perceptions

were

related

to

patients

and

partners

quality

of

life

but

only

to

their

vitality

ratings

After

controlling

for

patients

illness

related

variables

and

patients

own

beliefs

a

stronger

partner

belief

in

a

long

duration

of

the

patients

illness

and

less

belief

in

cure

through

treatment

both

added

to

the

association

with

higher

patient

vitality

The

results

are

in

line

with

those

of

Heijmans

et

al.

-LSB-

-RSB-

who

found

positive

relationships

between

spousal

maximization

of

illness

duration

and

patients

vitality

ratings

in

Addison

's

disease

Stronger

patient

beliefs

in

control

over

the

illness

added

to

higher

vitality

scores

in

partners

From

both

our

results

and

those

of

Heijmans

et

al.

it

appears

that

it

is

most

beneficial

to

have

a

spouse

who

is

realistic

-LRB-

albeit

negative

-RRB-

about

the

possibilities

for

cure

and

who

expects

the

illness

to

be

long-lasting

Research

on

how

realistic

optimism

may

impact

on

vitality

in

healthy

persons

and

patient

samples

supports

these

findings

-LSB-

-RSB-

The

results

obtained

in

this

study

must

be

regarded

in

the

light

of

some

limitations

The

lack

of

information

on

the

non-response

rate

in

the

sample

of

members

of

the

Dutch

Huntington

Association

makes

selection

bias

likely

Also

the

patients

involved

in

this

study

were

in

the

early

to

middle

stages

of

HD

as

shown

by

their

scores

on

the

UHDRS

and

MMS

This

prevents

extrapolation

of

our

results

to

other

samples

of

patients

with

Huntington

's

disease

On

the

other

hand

our

results

indicate

that

the

patients

in

our

study

did

not

differ

significantly

from

those

patients

with

Huntington

's

Disease

involved

in

other

studies

with

regard

to

important

disease

related

characteristics

such

as

motor

and

cognitive

functioning

-LSB-

-RSB-

Our

results

could

therefore

be

instrumental

in

future

research

on

quality

of

life

in

patients

-LRB-

and

their

partners

-RRB-

who

are

in

these

stages

of

HD

The

relatively

small

number

of

couples

included

and

the

relatively

large

number

of

variables

entered

into

the

regression

analyses

must

be

taken

into

account

as

well

More

research

is

justified

on

the

unique

contributions

of

the

spouses

perceptions

of

the

illness

that

may

be

associated

with

outcome

in

chronically

ill

patients

and

their

partners

Examining

these

associations

further

and

studying

which

psychological

mechanisms

may

be

involved

for

instance

by

interviewing

pairs

in

whom

these

associations

are

clearly

discernable

are

areas

for

future

research

From

a

clinical

perspective

an

understanding

of

the

cognitive

factors

that

are

related

to

quality

of

life

in

couples

dealing

with

chronic

illness

will

help

to

guide

family

interventions

Given

the

relative

paucity

of

research

on

biopsychosocial

aspects

of

Huntington

's

disease

qualititative

research

on

quality

of

life

may

be

helpful

in

future

research

e.g.

in

the

work

by

Brouwer-Dudokdewit

et

al.

-LSB-

-RSB-

where

qualitative

research

in

a

case-study

format

that

was

carefully

embedded

in

a

theoretical

framework

helped

explore

quality

of

life

issues

in

pre-symptomatic

testing

for

HD

These

researchers

emphasize

the

relevance

of

adding

an

existential

and/or

spiritual

approach

in

exploring

quality

of

life

issues

in

HD

patients

-LSB-

-RSB-

Empirical

studies

in

other

neurological

disorders

support

these

suggestions

Hodgson

et

al.

-LSB-

-RSB-

for

example

describe

the

lives

of

couples

living

with

Parkinson

's

disease

and

outline

how

these

couples

preferred

a

multidisciplinary

approach

to

their

treatment

and

believed

in

taking

an

active

role

in

their

health

care

Qualitative

approaches

to

assessing

QoL

in

Huntington

's

disease

spousal

carers

are

described

in

a

recent

paper

by

Aubeeluck

Buchanan

-LSB-

-RSB-

where

visual

representations

of

QoL

were

gathered

by

using

Photovoice

spousal

carers

photographed

and

described

elements

of

their

life

Finally

cognitive-behavioural

approaches

in

patients

with

dementia

and

their

caregivers

were

recently

shown

in

a

randomized

controlled

trial

to

result

in

improvements

in

patients

daily

functioning

and

reduced

burden

in

the

caregiver

These

studies

and

ours

illustrate

possible

directions

for

future

research

in

patients

-LRB-

and

their

partners

-RRB-

who

experience

an

extreme

negative

impact

on

quality

of

life

-LSB-

-RSB-

O O O O B O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O B I O O O O O O O B O O O O B O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O B O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B O O O O O O O O O O O B O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B O O O O O O O O O O O O O O O O O O O O B O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O B I O O O O O O O O O O O O O O O O B I O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O B I O O O O O O O O O O O O O O O O B I O O O O O O O O O O O B I O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O B I O O O O O O O O O O O O B I O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B I O O O O O O O O O O B I O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O B O O O O O O O O O O B O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O O

illness perceptions
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