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/Background: The Long-Term Conditions Questionnaire (LTCQ) was developed as a person-centred tool for measuring the cumulative impact of long-term health conditions (LTCs) and health-related services. Its 20 items were developed through in-depth patient interviews to generate content (Peters et al. 2016) and item refinement with lay and professional stakeholders (Kelly et al. 2016). A larger-scale study among primary care and social care recipients in England demonstrated the LTCQ’s measurement reliability and validity of its broad construct, ‘living well with LTCs’ (Potter et al. 2017). Methods: This study tested the LTCQ’s potential for use with people affected by memory problems, including carers. Participants were recruited following diagnosis of dementia or mild cognitive impairment at one of 14 memory clinics in South East England. Interviews with patients and carers (n=22) were undertaken to test the appropriateness of LTCQ for this patient population and to adapt the LTCQ content for use with carers. Surveys including the LTCQ/LTCQ-Carer and EQ-5D-5L were then distributed by memory clinic staff from February-August 2018 and returned by post. Results: Patients (n=102) had a mean age of 79 years (range 58-91), and 78% of the sample reported multi-morbidity. An LTCQ score could be calculated for 99% of the sample, with 85% fully completing the measure. Carers (n=102) had a mean age of 68 years (range 41-90) and were 64% female, with 56% reporting a long-term health condition. For both measures, missing data levels were low (0% to 5% per item), internal consistency was high (Cronbach’s α=0.92 and α=0.95 for LTCQ and LTCQ-Carer, respectively), and all items correlated with a single general construct. Scores for LTCQ (mean 70.9 of max 100, SD=19.0) and LTCQ-Carer (mean 72.9 of max 100, SD=19.2) correlated at least moderately with EQ-5D-5L values but were less skewed than EQ5D towards the most positive health state.   Discussion: Results from this study indicate that patients with mild/moderate memory problems, many of whom have multiple LTCs, can complete LTCQ as a meaningful measure of ‘living well’ while drawing on a complex array of health-related services. Furthermore, LTCQ-Carer shows promise as a concurrent measure for evaluating how well family/informal carers are supported as they engage with these services. Conclusions: LTCQ and LTCQ-Carer could play a role in the evaluation of integrated people-centred services, for patients with complex care needs (including those with memory problems) and their carers. Lessons learned: Low response rates (ranging from 6% to 43% for participating memory clinics) reflected the difficulty of research recruitment just after diagnosis of memory problems. Data might be better collected prior to memory clinic assessment and/or during periods of longer-term follow-up. Limitations: Although sufficient for these analyses, the relatively small sample sizes prevent generalisation of results for larger populations. Results should also not be applied cross-culturally owing to limited ethnic diversity of the sample (over 90% white British). Future research: The responsiveness of LTCQ and LTCQ-Carer to changes in health status has not yet been tested. A four-month follow-up study of memory clinic patients and their carers is in progress.

international journal of integrated care

Long-Term Conditions Questionnaire (LTCQ): a new tool for evaluation of integrated people-centred services in the context of multi-morbidity and complex care needs