Abstract
PurposeThe aim of this study was to validate the Long-Term Conditions Questionnaire (LTCQ) among patients using memory clinic services in England. LTCQ is a short self-administered measure of ‘living well with long-term conditions’ that has not been previously tested in patients with cognitive impairment.MethodsThe mixed-methods study included cognitive interviews to test the comprehensibility and content validity of LTCQ from the patient’s perspective, followed by a pilot survey to test the measure’s internal consistency, construct validity, structural validity, and responsiveness. Participants were recruited through memory clinics following a diagnosis of mild cognitive impairment or dementia.ResultsInterview respondents (n = 12) all found LTCQ’s content relevant, with only minor formatting modifications required. Among survey respondents (n = 105), most patients (86%) were able to self-report answers to LTCQ. High multimorbidity among the sample was associated with reduced LTCQ and EQ-5D scores. Internal consistency of LTCQ was high (Cronbach’s α = 0.93), no floor or ceiling effects were observed, and missing data levels were low. Factor analysis results further supported LTCQ’s structural validity, and predicted positive correlation with EQ-5D indicated construct validity. Score changes observed in a four-month follow-up survey (n = 61) are suggestive of LTCQ’s responsiveness.ConclusionLTCQ is a valid means of assessing health-related quality of life for people living with cognitive impairment (including dementia) in the early period of support following diagnosis. Owing to high levels of multimorbidity in this patient population, LTCQ offers an advantage over dementia-specific measures in capturing the cumulative impact of all LTCs experienced by the patient.
Highlights
Enhancing health-related quality of life (HRQoL) for people affected by dementia has been a key focus of national and international policy for more than a decade [1,2,3]
A separate proxy version of Long-Term Conditions Questionnaire (LTCQ) was trialled with carers, which only differed from the original LTCQ in referring to ‘them/their’ rather than ‘you/your’ health conditions
As a more holistic measure that captures the impact of multimorbidity, LTCQ could play a key role in monitoring longer-term changes in HRQoL, which will be impacted by the experience of cognitive impairment and its effects on the management of other long-term conditions
Summary
Enhancing health-related quality of life (HRQoL) for people affected by dementia has been a key focus of national and international policy for more than a decade [1,2,3]. As numbers of people living with dementia and other forms of cognitive impairment increase [4], defining and delivering person-centred care for this patient population remains a challenge [5]. Current priorities include ensuring that people affected by dementia have meaningful care after diagnosis, with appropriate metrics in place for monitoring this [2]. Current work seeks to identify appropriate HRQoL outcomes for people living with cognitive impairment including dementia [10, 11], with direct input from patients a critical element for success [12]. Monitoring HRQoL in people with cognitive impairment (including dementia) presents unique challenges: the extent to which patients are able to take part in self-administered measures is unclear [13], and the role that informal carers (i.e. family and friends who provide regular support) could play in routine quality-of-life monitoring is not well defined [14]
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