Long Term Conditions publications

 Interventions to Foster Resilience in Family Caregivers of People with Alzheimer's Disease: A Scoping Review.

Santonja-Ayuso   L, Corchón-Arreche S, Portillo MC

The family caregiver of a person with Alzheimer's disease still experiences, in most cases, negative consequences in their biopsychosocial environment, which are related to the acquisition of this role. 

However, it has been observed that this fact is not universal in this type of population since benefits can be obtained in the act of caring through the development of resilience. Given this possibility and given that nurses are the health professionals who support people in this illness process, there is an urgent need to identify which non-pharmacological interventions could improve or promote resilience in family caregivers of people with Alzheimer's disease.

https://doi.org/10.3390/ijerph21040485

April 2024

Methodological Proposal for the Adaptation of the Living with Long-Term Conditions Scale to the Family Caregiver

Marín-Maicas   P, Portillo MC, Corchón S, Ambrosio L

Caring for people living with LTCs has a negative impact on the quality of life of caregivers, affecting their psychological, emotional, social, physical, and financial well-being. Evaluating how the family caregivers live with LTC can provide social health professionals with important information when planning interventions that favor better living . Therefore, it would be useful to have a tool available that allows for objectifying the degree to which people live with LTCs, for both the individuals affected by LTCs and the family caregiver. 

Presently, many scales exist that allow for measuring different concepts in family caregivers.However, although an instrument exists that measures the degree of living with LTC, according to the people with LTCs the “Living with Chronic Illness Scale” , no instrument was found that measures the degree of living with LTCs of family caregivers that includes all the dimensions that shape said process. This gap in the literature, in relation to measurement instruments that evaluate how the family caregiver experiences living with LTCs, is the common thread in this work. 

Based on an instrument created for people living with LTCs, an adaptation of this scale was planned to extend the reach of the instrument to family caregivers. Numerous recommendations exist on the process of adaptation of a scale to a context different from which it was created, but the available guides only refer to the methodological process for their transcultural adaptation, and especially to the guidelines established that allow the use of the scale in a language that is different from the one used for its creation. However, no specific system with the necessary methodological steps to be taken for the adaptation of the EC-PC to the family caregiver was found. 

Therefore, the aim of this study is to present a detailed description of the methodological process of adapting the EC-PC to the family caregiver (EC-PC-Family), providing transparency to the process followed to construct a robust instrument, to contribute towards filling the gap found in the scientific literature.

https://doi.org/10.3390/nursrep14010041

March 2024

Change in treatment burden among people with multimorbidity: a follow-up survey

Hounkpatin HO, Roderick P, Harris S, Morris JE, Smith D, Walsh B, Roberts HC, Dambha-Miller H, Tan QY, Watson F, Fraser SD

Background: Treatment burden is the effort required of patients to look after their health and the impact this has on their functioning and wellbeing. Little is known about change in treatment burden over time for people with multimorbidity.

Aim: To quantify change in treatment burden, determine factors associated with this change, and evaluate a revised single-item measure for high treatment burden in older adults with multimorbidity.

https://doi.org/10.3399/bjgp.2022.0103

October 2022

Person-centred integrated care for people living with Parkinson's, Huntington's and Multiple Sclerosis: A systematic review

Bartolomeu Pires S,  Kunke Dl, Kipps   C, Goodwin N, Portillo MC

People living with long-term neurological conditions (LTNCs) have complex needs that demand intensive care coordination between sectors. This review aimed to establish if integrated care improves outcomes for people, and what characterises successful interventions.

https://doi.org/10.1111/hex.13948

January 2024

Psychometric properties of the living with long term conditions scale in an English-speaking population living with long term conditions in the UK

Ambrosio   L, Hislop-Lennie K, Serrano-Fuentes N, Driessens C, Portillo MC

Objective: To present the psychometric properties of the living with long-term condition (LwLTCs) scale in an English-speaking population of people with different LTCs.

Design: An observational and cross-sectional study, with retest was conducted. Psychometric properties including feasibility, internal consistency, confirmatory factor analysis, reproducibility and content validity were tested.

https://doi.org/10.1136/bmjopen-2023-077978

January 2024

Exploring Adherence to Pelvic Floor Muscle Training in Women Using Mobile Apps: Scoping Review

Harper RC, Sheppard S, Stewart C, Clark CJ

Pelvic floor dysfunction is a public health issue, with 1 in 3 women experiencing symptoms at some point in their lifetime. The gold standard of treatment for pelvic floor dysfunction is supervised pelvic floor muscle training (PFMT); however, adherence to PFMT in women is poor. Mobile apps are increasingly being used in the National Health Service to enable equity in the distribution of health care and increase accessibility to services. However, it is unclear how PFMT mobile apps influence PFMT adherence in women.

We aimed to identify which behavior change techniques (BCTs) have been used in PFMT mobile apps, to distinguish the core "capability, opportunity, and motivation" (COM) behaviors targeted by the BCTs used in PFMT mobile apps, and to compare the levels of PFMT adherence in women between those using PFMT mobile apps and those receiving usual care.

https://doi.org/10.2196/45947

December 2023

English Validation of the Living with Long Term conditions scale

Ambrosio   L, Hislop-Lennie K, Serrano-Fuentes N, Driessens C, Portillo MC

Background:

The English version of the living with long term conditions (LwLTCs) scale is a comprehensive person-centred measure that evaluates the complex process of living with long term conditions.

Objectives:

To present the psychometric properties of the LwLTCs scale in an English-speaking population in people with different long term conditions.

https://doi.org/10.1093/eurpub/ckad160.811

October 2023

Reducing the impact of COVID-19 on physical activity and mental health 

Ambrosio   L, Faulkner J, Lambrick D, Morris J, Compton E, Portillo MC

Background:

During the COVID-19 pandemic the United Kingdom government released regular guidance on limiting the spread of COVID-19. People, including those with long term conditions, were told to use physical distancing, self-isolation and/or shielding during COVID-19 to protect themselves and others. A consequence of these interventions was to exacerbate poor lifestyle behaviours, namely less physical activity.

Objectives:

To propose recommendations to support and sustain their physical activity of people with long term conditions during and after COVID-19 or other pandemics.

https://doi.org/10.1093/eurpub/ckad160.1570

October 2023

A conceptual framework for characterising lifecourse determinants of multiple long-term condition multimorbidity

Stannard   S, Berrington A, Paranjothy S, Owen R, Fraser S, Hoyle R et al

Social, biological and environmental factors in early-life, defined as the period from preconception until age 18, play a role in shaping the risk of multiple long-term condition multimorbidity. However, there is a need to conceptualise these early-life factors, how they relate to each other, and provide conceptual framing for future research on aetiology and modelling prevention scenarios of multimorbidity. We develop a conceptual framework to characterise the population-level domains of early-life determinants of future multimorbidity.

https://doi.org/10.1177/26335565231193951

September 2023

Multidisciplinary ecosystem to study lifecourse determinants and prevention of early-onset burdensome multimorbidity (MELD-B) – protocol for a research collaboration

Fraser SD, Stannard S, Holland S, Boniface M, Hoyle RB, Wilkinson R et al

Most people living with multiple long-term condition multimorbidity (MLTC-M) are under 65 (defined as ‘early onset’). Earlier and greater accrual of long-term conditions (LTCs) may be influenced by the timing and nature of exposure to key risk factors, wider determinants or other LTCs at different life stages. We have established a research collaboration titled ‘MELD-B’ to understand how wider determinants, sentinel conditions (the first LTC in the lifecourse) and LTC accrual sequence affect risk of early-onset, burdensome MLTC-M, and to inform prevention interventions.

https://doi.org/10.1177/26335565231204544

September 2023

Improving personalised care, through the development of a service evaluation tool to assess, understand and monitor delivery

Johnson L, Kirk H, Clark B, Heath S, Royse C, Adams C, Portillo MC

Systematically implementing personalised care has far reaching benefits to individuals, communities and health and social care systems. If done well, personalised care can result in better health outcomes and experiences, more efficient use of health services and reduced health inequalities. Despite these known benefits, implementation of personalised care has been slow. 

Evaluation is an important step towards achieving the ambition of universally delivered personalised care. There are currently few comprehensive assessments or tools that are designed to understand the implementation of personalised care at a service or system level, or the cultural, practical and behavioural factors influencing this. The aim of this paper is to describe the development and testing of a system-wide evaluation tool.

https://doi.org/10.1136/bmjoq-2023-002324

September 2023

A conceptual framework for characterising lifecourse determinants of multiple long-term condition multimorbidity

Stannard S, Berrington A, Paranjothy S, Owen R, Fraser S, Hoyle R, Boniface M, Wilkinson B, Akbari A, Batchelor S, Jones W, Ashworth M, Welch J, Mair FS, Alwan NA

Social, biological and environmental factors in early-life, defined as the period from preconception until age 18, play a role in shaping the risk of multiple long-term condition multimorbidity. However, there is a need to conceptualise these early-life factors, how they relate to each other, and provide conceptual framing for future research on aetiology and modelling prevention scenarios of multimorbidity. We develop a conceptual framework to characterise the population-level domains of early-life determinants of future multimorbidity.

https://doi.org/10.1177/26335565231193951

September 2023