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RESEARCH
Background
In certain circumstances, the EQ-5D is insensitive to changes or differences in health status.
‘Bolt-on’ dimensions could provide additional information about certain conditions or symptoms.
Previous research has highlighted cognition and vision as good candidates for bolt-ons.
Cognition and vision bolt-ons have been used in the past, but with limited development.
No study has developed bolt-on descriptors in a programme of qualitative and quantitative research.
Chris Sampson
Rebecca Addo
Phil Haywood
Mike Herdman
Bas Janssen
Brendan Mulhern
Katie Page
Oona Reardon
Marina Rodes Sanchez
Justine Schneider
Koonal Shah
Clare Thetford
CONTACT
csampson@ohe.org
Aim
●To identify the dimensions of health-
related quality of life that are important to
people with lived experience of cognitive
impairment and visual impairment.
●To develop EQ-5D-5L bolt-on descriptors
for cognition and vision, using suitable
terminology.
Methods
●Recruitment of people with a range of
experiences, including carers.
●Focus groups: two for each bolt-on, 4-9
participants.
●Semi-structured interviews: three for
each bolt-on.
●Thematic analysis of transcriptions.
Results
Dimensions
●Participants identified a variety of distinct cognition-specific dimensions.
●These were described using various terms, which we grouped together for coding.
●The vision group mostly described their experiences with reference to their level of vision in general.
●Specific characteristics of visual function were not framed as capturing the impact on quality of life.
●Similar generic dimensions arose in both groups, in varying degrees.
Terminology
●Certain terminology used in the study, including ‘impairment’, was identified as problematic.
●The term ‘cognition’ was not recognised as useful.
●The vision group tended to use the term ‘sight’ or ‘seeing’ rather than ‘vision’.
●Some participants preferred the term ‘difficulties’ to ‘problems’.
●In general, the existing ‘severity’ terminology of the EQ-5D-5L was acceptable (e.g.
slight/moderate/severe).
Discussion
●This is the first study to report on the development of bolt-ons using focus groups.
●To develop a generic descriptor, it is necessary to recruit people with a range of different
experiences. It was very difficult to coordinate focus groups with such a group, which meant that
we needed to conduct interviews in lieu of more focus groups.
●People do not conceptualise the impact of impairment on their health-related quality of life in terms
of their functioning. Rather, people consider broader impacts on quality of life. This made the
identification of specific terminology relating to functioning a challenge.
●Without prompting, the participants identified dimensions (both specific and broad) that are not
currently captured by the EQ-5D, implying the legitimacy of the bolt-ons research.
●Cognitive impairment is made of up distinct functional impacts, implying the need for a multi-item
bolt-on.
●The functional impact of visual impairment was described in general terms. Some people spoke
about characteristics of visual function, but these were too diverse to be useful as bolt-ons.
●Some participants disliked negative framing (e.g. “problems”) or ‘clinical’ terms (e.g. “impairment”).
Conclusions
●The development of bolt-on descriptors using focus groups is challenging
because of the need to recruit a heterogeneous population.
●A cognition bolt-on will probably require multiple items.
●‘Vision in general’ may be a suitable single-item bolt-on.
●The current structure of the EQ-5D-5L is amenable to bolt-ons for cognition
and vision.
●Terminology is very important –certain words are not meaningful to people
with lived experience.
●It will be necessary to test a range of wordings in qualitative interviews.
●Quantitative research is needed to determine the additional information
provided by the candidate bolt-ons.
This study was commissioned by
the EuroQol Research Foundation.
Views expressed are those of the authors and do not necessarily reflect the views of the EuroQol Group
Concentration
Attention
Focus
Mental stamina
Confusion
Muddled
Foggy
Understanding things
Language
Speaking
Conversation
Understanding words
Memory
Forgetfulness
Remembering things
Recall
Reasoning
Decision-making
Thinking
Figuring things out
Vision in general
Sight, seeing, blindness, light perception
Vision-related activities
Driving, reading
Characteristics of visual function
Colours, depth perception, distance, visual field
Emotional
Confidence
Enjoyment
Mood
Environmental
Control
Independence
Safety
Personal characteristics
Self-esteem
Sense of self
Dignity
Social
Relationships
Isolation
Social identity
Symptomatic
Fatigue
“Difficulties”
✓
“Problems”
✗
“Impairment”
✗
“Cognition”
✗
“Sight”
✓