Long-Term Conditions Questionnaire (LTCQ): initial validation survey among primary care patients and social care recipients in England

Abstract

ObjectiveThe aim of this study was to validate a new generic patient-reported outcome measure, the Long-Term Conditions Questionnaire (LTCQ), among a diverse sample of health and social care users in England.DesignCross-sectional validation survey. Data were collected through postal surveys (February 2016–January 2017). The sample included a healthcare cohort of patients recruited through primary care practices, and a social care cohort recruited through local government bodies that provide social care services.Participants1211 participants (24% confirmed social care recipients) took part in the study. Healthcare participants were recruited on the basis of having one of 11 specified long-term conditions (LTCs), and social care participants were recruited on the basis of receiving social care support for at least one LTC. The sample exhibited high multimorbidity, with 93% reporting two or more LTCs and 43% reporting a mental health condition.Outcome measuresThe LTCQ’s construct validity was tested with reference to the EQ-5D (5-level version), the Self-Efficacy for Managing Chronic Disease scale, an Activities of Daily Living scale and the Bayliss burden of morbidity scale.ResultsLow levels of missing data for each item indicate acceptability of the LTCQ across the sample. The LTCQ exhibits high internal consistency (Cronbach’s α=0.95) across the scale’s 20 items and excellent test–retest reliability (intraclass correlation coefficient=0.94, 95% CI 0.93 to 0.95). Associations between the LTCQ and all reference measures were moderate to strong and in the expected directions, indicating convergent construct validity.ConclusionsThis study provides evidence for the reliability and validity of the LTCQ, which has potential for use in both health and social care settings. The LTCQ could meet a need for holistic outcome measurement that goes beyond symptoms and physical function, complementing existing measures to capture fully what it means to live well with LTCs.

Measuring the benefits of the integration of health and social care: qualitative interviews with professional stakeholders and patient representatives

“…The development of measures of health status, often referred to as patient-reported outcome measures, has been hailed as the most important scientific break-through in fifty years, permitting the evaluation of services by means of broad measures of health as viewed and valued by patients and the public [21]. There are now readily available validated measures of health intended to capture the benefits of system innovations in health and social care [22,23]. There are, in addition, attempts to define sets of indicators to assess and monitor integrated care [24], and logic models that delineate relationships between systems and outcomes [25].…”

Estimating EQ-5D utilities based on the Short-Form Long Term Conditions Questionnaire (LTCQ-8)

“…Three different datasets were used in this study. The first dataset was derived from the validation study of the LTCQ, where 1211 patients with at least one of 11 specified LTCs (cancer, chronic back pain, COPD, diabetes, depression, irritable bowel syndrome, ischemic heart disease, multiple sclerosis, osteoarthritis, severe mental health conditions including schizophrenia, stroke) were recruited from geographically diverse regions in England representing urban and rural communities, as well as areas of high and low deprivation [7]. Approximately three-quarters of the participants (health care cohort) were recruited through 15 primary care (GP) practices in 3 regions (South East, North West, Yorkshire and Humber), and the remaining quarter (social care cohort) were recruited through 4 Local Authorities (in North West, East of England, South West, and Greater London).…”

“…It enables patients to self-report on the overall impact of living with one or multiple long-term conditions (LTCs), including physical and/or mental health conditions of varying severity. LTCQ was initially validated amongst a diverse sample of health and social care users in England [ 7 ], demonstrating strong psychometric properties of internal consistency, construct validity, and test-retest reliability. It has since been validated for use in memory clinics by patients with mild cognitive impairment or dementia [ 8 ], and it is being used to evaluate clinical interventions for schizophrenia [ 9 ].…”

Rasch analysis of the long-term conditions questionnaire (LTCQ) and development of a short-form (LTCQ-8)

“…The Long-Term Conditions Questionnaire (LTCQ) was developed to address these limitations [11][12][13][14]. The LTCQ is a 20-item PROM developed to assess and monitor outcomes in patients with either single or multiple LTCs (physical and/or mental health condition(s)) and is applicable in both health and social care contexts.…”

“…The LTCQ total score is calculated by summing the item scores and recalibrating the sum to give an overall LTCQ score, ranging from 0-100. Higher scores indicate a better level of 'living well' [14].…”