Use of the Long-Term Conditions Questionnaire (LTCQ) for monitoring health-related quality of life in people affected by cognitive impairment including dementia: pilot study in UK memory clinic services

Diagnosis of dementia and mild cognitive impairment (MCI) is improving, but people affected by cognitive impairment need ongoing support to maintain a good quality of life. Current health and social care policy states that improved health-related quality of life should be an outcome of effective services following diagnosis, but this is currently not being measured. The Long-Term Condition Questionnaire (LTCQ) is a patient-reported measure of ‘living well with long-term health conditions’ that could be used to monitor how well people are supported following a diagnosis of cognitive impairment. The purpose of this study was to test the use of LTCQ in English memory clinic settings. For the first phase of research, 12 people affected by cognitive impairment completed LTCQ during interviews and gave feedback about their experiences. A modified version of LTCQ was then completed through a survey taken by 105 people with a new diagnosis of MCI or dementia. Survey results showed that LTCQ scores were worse for patients with multiple long-term conditions (including MCI/dementia) and for patients who required more help in completing the survey. But most patients were able to respond to LTCQ questions themselves, to directly report their  health-related quality of life. 61 patients completed LTCQ again 4 months later, and changes in LTCQ scores reflected whether patients’ health had gotten better or worse since diagnosis. We concluded that LTCQ could potentially be used to monitor health-related quality of life following a diagnosis of cognitive impairment and should be tested further among larger numbers of patients.

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 [1‐3]. 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]. Earlier work to increase rates of diagnosis in order to accelerate access to appropriate care has been successful [6]. Current priorities include ensuring that people affected by dementia have meaningful care after diagnosis, with appropriate metrics in place for monitoring this [2]. The intention to monitor ‘the effectiveness of post-diagnosis care in sustaining independence and improving [health-related] quality of life’ for people affected by dementia is well established in England, through both the National Health Service (NHS) Outcomes Framework (indicator 2.6ii) and the Adult Social Care Outcomes Framework (indicator 2F); yet metrics for these indicators remain undefined [7, 8].

It is increasingly recognized that ‘living well’ with dementia is reflected in the patient’s perspective on their own health-related quality of life [9]. 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].

HRQoL is “generally considered to reflect the impact of disease and treatment on disability and daily functioning; it has also been considered to reflect the impact of perceived health on an individual’s ability to live a fulfilling life” [15]. It is a subjective assessment that reflects personal aspirations and contexts, so it is essential to measure HRQoL from the direct perspectives of patients as far as possible. An important contribution to the field was the development of the DEMQOL suite of measures for individuals with dementia and their carers [16, 17]. However, as DEMQOL is an interviewer-administered (rather than self-administered) measure, its application for ongoing monitoring of outcomes in clinical practice may be limited. The comorbidity of cognitive impairment with other long-term health conditions (LTCs) also potentially limits the use of dementia-specific measures to clearly defined populations, e.g. those participating in clinical trials. In contexts of high multimorbidity [18, 19], a generic HRQoL measure might be preferred for assessing overall outcomes of joined-up services.

The Long-Term Conditions Questionnaire (LTCQ) is a short self-administered measure of the cumulative impact of long-term conditions. It was designed as a holistic measure to capture traditional and non-traditional domains of HRQoL within a general construct of ‘living well with LTCs’, potentially complementing symptom-burden assessments through disease-specific measures. LTCQ was developed through a series of literature reviews, stakeholder and public consultation, qualitative and cognitive interviews with patients, a translatability assessment, and a first validation survey. Results from the stakeholder phase [20] and qualitative interviews [21] demonstrated in-principle support from health professionals and patients for a quality-of-life measure that works across a large range of conditions. Results from cognitive interviews and the translatability assessment [22] indicated that LTCQ captures areas of importance to people with LTCs, and that questionnaire items are comprehensible and meaningful. The 20-item LTCQ captures a broad range of domains (most represented by a single item) including: sense of control, ability to do meaningful activities, safety inside and outside the home, burden of treatments and services, negative experiences including loneliness and stigma, confidence to self-manage LTCs, and ability to live life as one wants. Results from the first validation study among a diverse sample of patients using general practice and social care services in England [23] indicated that the LTCQ’s psychometric properties including internal consistency and test–retest reliability are excellent. Further Rasch analysis [24] confirmed a single scale for the construct ‘living well with LTCs’. Collectively these studies suggest LTCQ’s potential for use in monitoring HRQoL across a wide range of clinical settings. But to date, the LTCQ has not been tested among patients with cognitive impairment, nor has its potential use by informal carers been assessed.

The aim of this study was to validate LTCQ for use among patients with recently diagnosed dementia or mild cognitive impairment. Through this research, we sought to assess the relevance of LTCQ items (content validity) and feasibility of self-completion among the study population; to understand the burden of LTC management experienced by patients referred to memory clinics; and to identify preferred approaches for, and potential barriers to, the use of the LTCQ as an outcome measure for evaluating post-diagnosis memory services.

This study was the first to test use of the Long-Term Conditions Questionnaire within a clinical population of people affected by cognitive impairment including dementia. It served as further validation of LTCQ beyond its initial sample, which included people living with a wide range of LTCs, e.g. cancer, chronic back pain, chronic obstructive pulmonary disease, depression, diabetes, ischemic heart disease, irritable bowel syndrome, schizophrenia, multiple sclerosis, osteoarthritis, and stroke. Consistency of results from the current and earlier study [23] suggests that the range of LTCQ scores observed is potentially generalizable to the wider population of people living with LTCs, including those with cognitive impairment. It was noted that among this clinical sample a peak in frequency occurred in the LTCQ score range 55–60, which was also observed among a sub-sample of social care service users in the initial validation study but which was not observed among the initial validation sample as a whole. This suggests that patients diagnosed with cognitive impairment may already experience reduced health-related quality of life and may require higher levels of support from services at the point of diagnosis, in comparison to patients diagnosed with other LTCs.

A striking finding was the high burden of multimorbidity within the sample. Those with at least one LTC in addition to MCI/dementia reported reduced HRQoL across all measures, with the effect more pronounced as the number of comorbidities increased. The interplay between cognitive impairment and other LTCs was observed during a patient interview in which the difficulty of managing diabetes was highlighted as the main impact of cognitive impairment; the interview ended prematurely as the patient required help from their carer to address uncontrolled insulin levels after feeling unwell. While condition-specific measures are valuable for their sensitivity in detecting changes associated with that condition (and thus may be preferred in clinical trials for testing efficacy of treatments targeted towards specific symptom reduction) [34], in daily life patients manage the cumulative impacts of all their LTCs. 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.

This study highlighted the capability of many patients with cognitive impairment to self-report their own health-related quality of life. Most patients who took part in interviews were able to complete the questionnaire independently and could engage with the researcher on the relevance of LTCQ’s content for their personal circumstances. When prompted to reflect on whether or not completing LTCQ would be useful within health and social care settings, interview participants saw its value as a tool for reflection on their current health status – but only if completion of the questionnaire resulted in dialogue with health professionals. Several patients anticipated that progression of cognitive impairment would affect their answers to LTCQ, which could be used to track changes in their HRQoL over time. Longitudinal collection of LTCQ data could potentially highlight new support needs from services (both within and outside of memory clinics) as the cumulative impacts of LTCs change.

Nonetheless, high variation of cognitive function among this patient population presents a specific challenge for routine collection of patient-reported outcomes. While the majority of memory clinic patients in this study (10 of 12 interview participants, 86% of survey respondents) were able to give their own answers to LTCQ items, many had some level of help in completing the questionnaire, e.g. help from a carer to stay focused (observed in two interviews) or physical help in filling out the form (reported by 43% of survey respondents). In two interviews and 12% of survey respondents, a carer fully answered LTCQ items on the patient’s behalf. The difficulty of accurately anticipating the level of help needed was noted by memory clinic staff during the first round of interviews, when trying to decide whether participants should be given the self-complete or proxy version of the questionnaire. In the interviews, it was observed that help would likely be given by a carer if this was the usual dynamic in the relationship (e.g. if the carer habitually handled the patient’s written correspondence, or took active part in the patient’s medical consultations). A recognized issue in proxy-reported outcomes is that carers may perceive and report patients’ health-related quality of life differently than patients themselves [35]. This potential limitation in interpretation must be balanced by the need to collect patient-reported outcomes as far as possible for people with cognitive impairment, particularly for ‘seldom heard’ groups for whom HRQoL assessment is often absent from consideration of their service support needs [36].

The small sample size is a limitation of the study. While meeting the ‘very good’ quality threshold for internal consistency and construct validity analyses, with ‘adequate’ sample sizes for factor analysis and responsiveness [27], the study team initially aimed for a larger sample that would have enabled more detailed sub-group analysis (e.g. by specific comorbidities) and more thorough testing of responsiveness. As the first study collecting longitudinal LTCQ data, the follow-up survey results are encouraging: LTCQ scores changed as predicted in the same direction as self-reported change in health status, with a statistically significant decrease in LTCQ scores for participants reporting ‘worse health than four months ago’. However, as the sample size for Survey 2 is only of ‘adequate’ (rather than ‘very good’) quality for responsiveness analysis [27], with change scores for those reporting better health not reaching statistical significance, results should be verified in larger samples.

The sample size reflects modest response to the initial study invitation at clinics, which limits generalizability of the findings. We were somewhat surprised to observe that mean scores for both LTCQ and EQ-5D were higher for this sample than for the initial validation sample, which excluded patients with cognitive impairment [23]. This observation, coupled with slower-than-anticipated participant recruitment, suggests a potential bias in the study results towards the most well patients within the target clinical population. LTCQ’s validity among patients whose cognitive impairment is more severe is therefore uncertain and needs to be tested further in studies for which linked data on individuals’ diagnosis and level of cognitive function are available. In seeking to explain the difficulty of recruitment to the study, we noted that in Phase 1 interviews participants spoke of the diagnosis period as potentially overwhelming, both emotionally and in terms of the amount of information received. For routine collection of patient-reported outcomes we recommend that baseline data are gathered prior to the memory clinic assessment appointment, and/or at a first follow-up assessment to allow for a period of adjustment to the diagnosis.

The Long-Term Conditions Questionnaire 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. Initial results suggest that LTCQ captures changes in HRQoL as a patient’s health improves or deteriorates over time, but larger-scale studies with linked data on severity of cognitive impairment are needed to further test LTCQ’s responsiveness and use in longitudinal outcomes assessment. It is essential that people with cognitive impairment are given the opportunity to report, as far as possible, on if the health and care services they use enable them to maintain or improve their health-related quality of life. Validation of LTCQ within this patient population increases its utility as a tool for person-centred care across the full range of long-term conditions.