The Long-Term Conditions Questionnaire (LTCQ): Conceptual framework and item development

Purpose: To identify the main issues of importance when living with long-term conditions to refine a conceptual framework for informing the item development of a patient-reported outcome measure for long-term conditions. Methods: Semi-structured qualitative interviews (n=48) were conducted with people living with at least one long-term condition. Participants were recruited through primary care. The interviews were transcribed verbatim and analysed by thematic analysis. The analysis served to refine the conceptual framework, based on reviews of the literature and stakeholder consultations, for developing candidate items for a new measure for long-term conditions. Results: Three main organising concepts were identified ‘Impact of long-term conditions’, ‘Experience of services and support’ and ‘Self-care’. The findings helped to refine a conceptual framework leading to the development of 23 items that represent issues of importance in long-term conditions. The 23 candidate items formed the first draft of the measure, currently named the Long-Term Conditions Questionnaire (LTCQ). Conclusions: The aim of this study was to refine the conceptual framework and develop items for a patient-reported outcome measure for long-term conditions, including single and multiple morbidities, and physical and mental health conditions. Qualitative interviews identified the key themes for assessing outcomes in long-term conditions and these underpinned the development of the initial draft of the measure. These initial items will undergo cognitive testing to refine the items prior to further validation in a survey

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

Objective: The 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. Design: Cross-sectional validation survey. Data were collected through postal surveys (February 2016 - January 2017). The sample included a health care cohort of patients recruited through primary care practices, and a social care cohort recruited through local government bodies that provide social care services. Participants: 1,211 participants (24% confirmed social care recipients) took part in the study. Health care participants were recruited on the basis of having one of eleven specified LTCs, and social care participants were recruited on the basis of receiving social care support for at least one LTC. The sample exhibited high multi-morbidity, with 93% reporting two or more LTCs and 43% reporting a mental health condition. Outcome measures: The 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. Results: Low 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 (ICC = 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. Conclusions: This study provides evidence for the reliability and validity of the Long-Term Conditions Questionnaire, 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 fully capture what it means to live well with LTCs

Understanding heart failure; explaining telehealth – a hermeneutic systematic review

Abstract Background Enthusiasts for telehealth extol its potential for supporting heart failure management. But randomised trials have been slow to recruit and produced conflicting findings; real-world roll-out has been slow. We sought to inform policy by making sense of a complex literature on heart failure and its remote management. Methods Through database searching and citation tracking, we identified 7 systematic reviews of systematic reviews, 32 systematic reviews (including 17 meta-analyses and 8 qualitative reviews); six mega-trials and over 60 additional relevant empirical studies and commentaries. We synthesised these using Boell’s hermeneutic methodology for systematic review, which emphasises the quest for understanding. Results Heart failure is a complex and serious condition with frequent co-morbidity and diverse manifestations including severe tiredness. Patients are often frightened, bewildered, socially isolated and variably able to self-manage. Remote monitoring technologies are many and varied; they create new forms of knowledge and new possibilities for care but require fundamental changes to clinical roles and service models and place substantial burdens on patients, carers and staff. The policy innovation of remote biomarker monitoring enabling timely adjustment of medication, mediated by “activated” patients, is based on a modernist vision of efficient, rational, technology-mediated and guideline-driven (“cold”) care. It contrasts with relationship-based (“warm”) care valued by some clinicians and by patients who are older, sicker and less technically savvy. Limited uptake of telehealth can be analysed in terms of key tensions: between tidy, “textbook” heart failure and the reality of multiple comorbidities; between basic and intensive telehealth; between activated, well-supported patients and vulnerable, unsupported ones; between “cold” and “warm” telehealth; and between fixed and agile care programmes. Conclusion The limited adoption of telehealth for heart failure has complex clinical, professional and institutional causes, which are unlikely to be elucidated by adding more randomised trials of technology-on versus technology-off to an already-crowded literature. An alternative approach is proposed, based on naturalistic study designs, application of social and organisational theory, and co-design of new service models based on socio-technical principles. Conventional systematic reviews (whose goal is synthesising data) can be usefully supplemented by hermeneutic reviews (whose goal is deepening understanding)

Are there enough GPs in England to detect hypertension and maintain access?

We read with interest the paper by Baker et al exploring the interrelationship between size of hypertension register, GP provision, and access (defined as the ability to get an appointment within 48 hours), assessed in 8052 practices. It suggests a conundrum in primary care: the ‘better’ a practice’s recognition and presumably management of hypertension, the worse the access, given finite staffing resources. The same inverse relationship may apply in other chronic diseases such as diabetes mellitus, where the recognition of risk factors or disease in often asymptomatic individuals also leads to additional workload. As acknowledged by the authors, no information was available on how different members of the primary healthcare team are used, but it appears that, ‘an extra GP per 1000 patients would be associated with a 6% increase in detected hypertension’