Validation of the living with chronic illness scale in an English-speaking population with Long-term conditions

Principal Investigator:

Professor Mari-Carmen Portillo (Professor of Long-Term Conditions. School of Health Sciences. University of Southampton)

Team members: Professor Mari-Carmen Portillo (Professor of Long-Term Conditions. School of Health Sciences. University of Southampton), Dr Kelly Hislop-Lennie (Lecturer, School of Health Sciences. University of Southampton), Dr Emily Arden-Close (Department of Psychology, Bournemouth University), Dr Jo Hope (Research Fellow, School of Health Sciences, University of Southampton), Dr David Culliford (Senior Medical Statistician, School of Health Sciences, University of Southampton), Dr James Bennett (Primary Care Research Locality Lead, Clinical Research Network Wessex), Dr Simon Fraser (Associate Professor of Public Health. University of Southampton), Dr Leire Ambrosio (Lecturer, Faculty of Nursing. University of Navarra, Spain)

Start: 1 October 2019 Ends: 30 September 2021

Project Partners:

Clinical Research Network (CRN) Wessex, Primary Care Dorset, Bournemouth University, University Hospital Southampton NHS Foundation Trust

Lay summary

Long term conditions (LTCs) are a worldwide challenge because of their complications, increasing numbers, costs and impact on people’s lives. In order to develop interventions that improve the adaptation to illness and quality of life, we need appropriate, reliable and valid tools, which reflect cultural and language diversities and individual needs. This would benefit both patients and health/social care professionals in the management of LTC, by allowing the patients a way to express their needs and therefore, allow the health/social care professional to direct the patient to specific, relevant resources.

The present study aims to produce an English version of the Living with Chronic Illness Scale and establish if it can be useful and applicable to English speaking people with LTCs in the UK.

The Living with Chronic Illness Scale is the only available tool, which comprehensively evaluates the experience of living with a long-term condition, focusing on the person and not on the disease. This scale was created after previous research, and successfully used with people with Parkinson’s Disease from Spain and South America, in Spanish.

In this study we will first translate the Spanish version of the scale into English, making any necessary cultural changes. After this, we will test the understanding of the approved English version with 15 people with LTCs. Then, we will use the final English version of the scale with at least 1,650 people with different LTCs in community settings from Wessex. Apart from the Living with Chronic Illness Scale, we will ask participants about perceived social support, life satisfaction, quality of life, and the perceived severity of their LTC(s), using tools for English speakers.

Finally, 2 discussion groups will take place with people with LTC, 2 with family-carers and 2 with health professionals to explore and compare their views about the usefulness of this scale in the daily management of LTC.

People with long-term conditions and associations have contributed to the choice of topic, research and dissemination plan.