Are PROMs just for patients? Piloting the Long-Term Conditions Questionnaire for use with patients and carers in memory clinic settings
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Caroline Potter, Michele Peters, Maureen Cundell, Rupert McShane, Ray Fitzpatrick. Are PROMs just for patients? Piloting the Long-Term Conditions Questionnaire for use with patients and carers in memory clinic settings. J Patient Rep Outcomes. 2020 May; 4(Suppl 1): 28.
Background & Aims The Long-Term Conditions Questionnaire (LTCQ) was developed for assessing the overall impact of long-term health conditions (LTCs) on quality of life. Enhancing quality of life for people affected by dementia is a key focus of English health policy. Acknowledging that most dementia patients are supported by an informal carer, and noting LTCQ’s general construct of ‘living well’ whilst managing illness, we tested LTCQ’s potential for use with both patients and carers in memory clinic settings. Methods Participants were recruited through one of 14 memory clinics in South East England. Surveys including the LTCQ/LTCQ-Carer, EQ5D (5-level version), and ASCOT-Carer (carer surveys only) were distributed by memory clinic staff from February-September 2018 and returned by post. Results Patients (n=105) had a mean age of 79 years (range 58-91), with multi-morbidity reported for 78% of the sample. Carers (n=107) had a mean age of 67 years (range 41-90), with 57% reporting a long-term health condition. For both measures, missing data was low (5% or less per item), internal consistency was high (Cronbach’s α=0.93 and α=0.95 for LTCQ and LTCQ-Carer, respectively), and all items correlated with a single general construct. Scores for LTCQ (mean 71.0 of max 100, SD=18.9) and LTCQ-Carer (mean 72.4 of max 100, SD=19.3) correlated moderately with EQ5D scores with less skew towards the most positive health state. LTCQ-Carer scores correlated strongly with ASCOT-Carer scores while covering a broader range of content. Memory clinic staff reported that offering LTCQ-Carer during assessment visits encouraged early dialogue about carer needs. Conclusions Patients with mild/moderate memory problems, many of whom have multiple LTCs, can complete LTCQ as a meaningful measure of ‘living well’ following diagnosis of MCI or dementia. LTCQ-Carer shows promise as a concurrent measure for evaluating how well carers are supported during the post-diagnosis period.