Capturing the Lived Experience of Long-Term Conditions
29th September 2025
The Long-Term Conditions Questionnaire (LTCQ) provides a validated way to capture how long-term health conditions affect everyday life, independence, and wellbeing.
Long-term conditions (LTCs) represent a significant and growing challenge for healthcare systems globally, with millions of people managing their impact on daily life, independence, and wellbeing. Understanding these broader consequences is essential for delivering person-centred care and designing services that respond to real patient needs. The Long-Term Conditions Questionnaire (LTCQ) offers a robust and validated way of achieving this.
The LTCQ is a 20-item patient-reported outcome measure (PROM), designed specifically to capture the lived experience of individuals with LTCs. Developed through a comprehensive programme of qualitative and cognitive interviews, it ensures that the patient perspective is central to its framework. The LTCQ assesses key domains that are critical to living well with LTCs, including:
- Role functioning
- Social participation
- Treatment burden
- Confidence to self-manage illness
The measure has been extensively validated across health and social care contexts, with evidence of utility in both clinical practice and research on a global scale. Recent applications have demonstrated its relevance for populations with mild cognitive impairment and early-stage dementia, further underlining its adaptability to different clinical settings. In research, the LTCQ provides valuable insights into how conditions and interventions affect everyday life.
The LTCQ is also available in a short-form version (LTCQ-8), which reduces respondent burden while capturing essential aspects of patient experience. In addition, the LTCQ-Carer has been developed and validated with carers of people with cognitive impairment and dementia. This companion tool provides a means of evaluating the effectiveness of support provided to carers, acknowledging their vital contribution to long-term condition management.
As the prevalence of LTCs continues to rise, the importance of reliable, patient-centred measures such as the LTCQ cannot be overstated. By systematically incorporating patient and carer perspectives across multiple domains of life, the LTCQ equips healthcare professionals, researchers, and policymakers with the evidence needed to design, evaluate, and deliver services that genuinely improve quality of life.
If you have any questions related to the LTCQ or would like to find out more information on other Clinical Outcome Assessment’s available through OUI, please contact the Clinical Outcomes team via healthoutcomes@innovation.ox.ac.uk .
