DISCUSSION
to the mRS correlates to higher self-perceived impact
of strength, ADL and hand function. These correlations
were moderate. Moderate correlation was seen between
more severe stroke and health-related quality of life.
Self-perceived impact of stroke
From 1 to 5 years post-stroke, participants reported a
worsening in the self-perceived impact of stroke. Most
pronounced were changes in strength, emotion, and
participation, as well as autonomy indoors and social
life. There were moderate correlations between depen-
dency at discharge from hospital (mRS) and strength,
ADL and hand function (SIS) as well as with health-
related quality of life (EQ5D) 5 years post stroke.
The results that self-perceived impact of stroke
could be more pronounced after several years are
shown in a recent longitudinal study over 6 years (9).
Similarly, the same trend can be seen in another study
(18) where deterioration could be seen in functional
outcome during the first year after stroke. An interview
study (19) showed that persons with stroke are still
facing challenges 5 years post-stroke and view it as an
ongoing process. Persons with stroke have fewer social
relations and participate less in society after 5 years.
Furthermore, persons adjust their life after stroke by,
for example, developing new skills and realizing their
limitations (19). The results of that study can explain
the results of the present study, which showed a lower
score for the participation dimension after 5 years.
In the present study, the emotion domain showed
significant deterioration at 5 years compared with 1
year. Other studies (20, 21) have shown a relationship
between mood state and participation, and this could
not be ruled out in the present study. Poor community
participation has been shown to be a predictive factor
for depression in persons with stroke (20). Another
study showed that mood disorders, as measured by
Hospital Anxiety and Depression Scale (HADS), was
a contributing factor of participation restriction (21).
In the IPA, there was a significant deterioration in the
autonomy indoors and social life subscales in 1–5
years. A recent study (22) indicated that between 1 and
6 years, the proportion who were satisfied with their
family life were lower. This is in line with the present
results, with more perceived problems regarding indoor
autonomy, which will affect family life.
Previous studies (23, 24) with shorter follow-up
periods of 3 and 6 months, respectively, have shown
that outdoor autonomy was most affected. It is pos-
sible that, with time, people refrain from using mo-
bility devices indoors, and therefore a deterioration
in autonomy indoors occurs. It is also possible that
the inability to continue doing the same activities as
663
before stroke contributes to the feeling of restrictions
in social life (3).
The present study showed moderate correlations bet-
ween the strength, ADL and hand function dimensions
of the SIS and dependency measured by mRS. Consi-
dering that mRS measures functional dependency, it
seems natural that these dimensions have the strongest
correlations with mRS. The correlation in the present
study between mRS and ADL was slightly weaker than
was seen in another study (25) conducted approxima-
tely 3 weeks into rehabilitation. In the present study,
the analysis was performed 5 years post-stroke, when
the rehabilitation period is completed and people have
probably adjusted themselves to their new situation
post-stroke.
Limitations
The present study has some limitations that should be
taken into account. The study only includes patients
who were treated at 1 hospital, where all the throm-
bolysis and thrombectomy treatments in the region
take place, resulting in, for instance, a selection bias
towards younger people (since, at the time, there was
an age limit on thrombolysis). Furthermore, participants
included in the study initially all had impaired upper
extremity function, which results in a selected group of
participants and may limit the possibility to generalize
the results. The method of gathering information, with
interviews at 1 year and postal surveys at 5 years, may
have influenced the results. However, it has been shown
previously that there is a moderate agreement between
postal surveys and interviews (26). There is a response
bias, with persons with less severe stroke participating
in the follow-up. This, as well as the small sample size,
reduces the generalizability of the results. This indicates
a need for longer, larger follow-up studies. The fact that
there is no control population means that the normal
ageing process, which could have an influence, is not
addressed in the study design. However, since the mean
age at stroke onset was 64 years, the healthy normal
ageing process between 64 and 69 years will probably
not have a large impact on participation.
Conclusion
It appears that the perceived impact of stroke becomes
more prominent with time. This is the case even for
persons with mild-to-moderate stroke. Some of the
most affected areas are emotion and participation.
The present study highlights the need for regular long-
term follow up for persons with stroke. The content at
follow-up should contain not only secondary preven-
tion, but also an assessment of the whole situation for
the person. The World Stroke Organization endorsed
J Rehabil Med 51, 2019