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:

Dr Kelly Hislop-Lennie (Principal Investigator). Senior Lecturer in Adult Nursing. University of Bournemouth.

Dr Leire Ambrosio. Senior Research Fellow. School of Health Sciences and NIHR Applied Research Collaboration Wessex, University of Southampton.

Ms Hannah Barker. PhD student at the School of Geography, University of Southampton.

Dr David Culliford. Principal Research Fellow and Senior Medical Statistician. School of Health Sciences, University of Southampton.

Dr Emily Arden-Close. Principal Academic in the Department of Psychology, Bournemouth University.

Dr Jo Hope. Lecturer. School of Health Sciences and NIHR Applied Research Collaboration Wessex, University of Southampton.

Dr James Bennet. Primary Care Research Locality Lead, Clinical Research Network Wessex.

Dr Simon Fraser. Associate Professor of Public Health. University of Southampton

Dr Corine Driessens. Senior Research Fellow in Statistics. NIHR Applied Research Collaboration Wessex, University of Southampton.

Dr Nestor Serrano-Fuentes. Senior Research Fellow. School of Health Sciences and NIHR Applied Research Collaboration Wessex, University of Southampton.

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

NHS: Alresford Surgery. Alresford, Angel Hill Surgery. Bury St. Edmunds, Banbury Cross Health Centre. Oxfordshire, Buchanan Road Surgery. Sheffield, Buttercross Health Centre. Somerton, Glastonbury Health Centre. Glastonbury, Heeley Green Surgery. Sheffield, Ixworth Surgery. Ixworth, Newquay Health Centre. Newquay, Oaks Healthcare. Waterlooville, Park Road Surgery. Teddington, Rosedale Surgery. Lowestoft, Shreeji Medical Centre. Slough, Swanage Health Centre. Swanage, The Park Medical Practice. Shepton Mallet, Trafalgar Medical Group Practice. Portsmouth, Wareham Surgery. Wareham, White Horse Medical Practice. Faringdon.

Charity Partners: Parkinson’s UK, Diabetes UK and Asthma UK

What did we find out?

• The scale successfully measures individuals’ experiences of living with one or more long-term conditions

• We found that the scale was acceptable to 577 people from the United Kingdom living with different long-term conditions.

• The results recommend shortening the original version of the scale for better use in clinical practice.

What difference can this new knowledge make?

The scale does not focus on the disease but on how the person lives with the disease; therefore, identifying physical, emotional, spiritual, and social complex needs and what is meaningful and relevant to people.

Utilising the scale as an assessment and diagnostic tool in primary care could result in better health care. For example, it could support the development of more comprehensive and individualised care plans, a more effective and directed referral to specialists and community support groups, and regular monitoring.

Its use could bridge health and social care services, developing and evaluating care pathways based on the commonalities across conditions (not medical diagnosis), and improving patient experience.

Why is this important?

This work has led to a new understanding of key elements that health and social care interventions must address to improve the lives of people living with long-term conditions. It highlights the need to focus on capturing the things that matter to people living with one or more long-term conditions in the UK.

What next?

The next step is to carry out a feasibility implementation study of the scale in clinical practice, particularly for people living with type 2 diabetes.  The use of this scale in clinical practice has the potential to improve the daily lives of people with multiple conditions, improving their quality of life and well-being. It can also help improve referral processes and coordinate care.

Outputs from research:

Ambrosio, L., Hislop-Lennie, K., Serrano-Fuentes, N., Driessens, C., & Portillo, M. C. (2023). First validation study of the living with long term conditions scale (LwLTCs) among English-speaking population living with Parkinson's disease. Health and quality of life outcomes, 21(1), 69. https://doi.org/10.1186/s12955-023-02154-6

Ambrosio, L., Hislop-Lennie, K., Barker, H., Culliford, D., & Portillo, M. C. (2021). Living with Long term condition Scale: A pilot validation study of a new person centred tool in the UK. Nursing open, 8(4), 1909–1919. https://doi.org/10.1002/nop2.859

Ambrosio L, Navarta-Sánchez MV, Portillo MC, Martin-Lanas R, Recio M, Riverol M. Psychosocial Adjustment to Illness Scale in family caregivers of patients with Parkinson's Disease: Spanish validation study. Health Soc Care Community. 2021 Jul;29(4):1030-1040. https://doi.org/10.1111/hsc.13137

Ambrosio L, Hislop-Lennie K, Serrano-Fuentes N, Driessens C, Portillo MC. Psychometric properties of the living with long term conditions scale in an English-speaking population living with long term conditions in the UK. BMJ Open. 2024 Jan 10;14(1):e077978. https://doi.org/10.1136/bmjopen-2023-077978

Background and origina 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.