Long Term Conditions publications

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

A Parkinson care-coordinator may make a difference: A scoping review on multi-sectoral integrated care initiatives for people living with Parkinson's disease and their caregivers

Vester LB, Haahr A, Nielsen TL, Bartolomeu S, Portillo MC

Objective: To identify multi-sectoral integrated care initiatives for people with Parkinson's disease and caregivers.

Method: Following the Matrix Method we created a synthesis of literature across methodological approaches. The search was conducted in four databases until June 2022, and included studies focusing on multi-sectoral integrated care initiatives, and how they helped people with Parkinson's disease and caregivers in everyday living.

https://doi.org/10.1016/j.pec.2023.107931

August 2023

Guidance and standard operating procedures for functional exercise testing in cystic fibrosis

Saynor ZL, Gruet M, McNarry MA, Button B, Morrison L, Wagner M, Sawyer A, Hebestreit H, Radtke T, Urquhart DS; European Cystic Fibrosis Society Exercise Working Group

Regular exercise testing is recommended for all people with cystic fibrosis (PwCF). A range of validated tests, which integrate both strength and aerobic function, are available and increasingly being used. Together, these tests offer the ability for comprehensive exercise evaluation. Extensive research and expert consensus over recent years has enabled the adaptation and standardisation of a range of exercise tests to aid the understanding of the pathophysiology related to exercise limitation in PwCF and has led to the development of novel exercise tests which may be applied to PwCF. 

This article provides expert, opinion-based clinical practice guidance, along with test instructions, for a selection of commonly used valid tests which have documented clinimetric properties for PwCF. Importantly, this document also highlights previously used tests that are no longer suggested for PwCF and areas where research is mandated. This collaboration, on behalf of the European Cystic Fibrosis Society Exercise Working Group, represents expert consensus by a multidisciplinary panel of physiotherapists, exercise scientists and clinicians and aims to improve global standardisation of functional exercise testing of PwCF. In short, the standardised use of a small selection of tests performed to a high standard is advocated.

https://doi.org/10.1183/16000617.0029-2023

August 2023

First validation study of the living with long term conditions scale (LwLTCs) among English-speaking population living with Parkinson's disease

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

Introduction: Parkinson's disease is the second most prevalent neurodegenerative disease, affecting 10 million people worldwide. Health and social care professionals need to have personalised tools to evaluate the process of living with Parkinson's disease and consequently, plan individualised and targeted interventions. Recently, the English version of the Living with Long term conditions (LwLTCs) scale has been developed filling an important gap related to person-centred tools to evaluate the process of living with long term conditions among English-speaking population. However, no validation studies for testing its psychometric properties have been conducted.

Aim: To analyse the psychometric properties of the LwLTCs scale in a wide English-speaking population living with Parkinson's disease.

https://doi.org/10.1186/s12955-023-02154-6

July 2023

Physical activity and mental health experiences of people living with long term conditions during COVID-19 pandemic: A qualitative study

Ambrosio L, Morris J, Compton E, Portillo MC

Introduction: Regular physical activity is a strategy that is effective in the physical management of long term conditions. The COVID-19 pandemic, led to disruption of physical activity routines for many people with long term conditions. It is important, to understand the experiences of people with long term conditions regarding physical activity during COVID-19 to enable future identification of strategies to mitigate the impact of restrictions on health.

Objective: To explore perceptions and experiences of people with long term conditions of the impact of the UK Government physical distancing restrictions on their physical activity participation during the COVID-19 pandemic.

https://doi.org/10.1371/journal.pone.0285785

July 2023

A proposal to embed patient and public involvement within qualitative data collection and analysis phases of a primary care based implementation study

Moult A, McGrath C, Lippiett K, Coope C, Chilcott S, Mann C, Evans N, Turner A, Dziedzic K, Portillo MC, Johnson R

Patient and public involvement (PPI) is increasingly seen as essential to health service research. There are strong moral and ethical arguments for good quality PPI. Despite the development of guidance aimed at addressing the inconsistent reporting of PPI activities within research, little progress has been made in documenting the steps taken to undertake PPI and how it influences the direction of a study. Without this information, there are minimal opportunities to share learnings across projects and strengthen future PPI practices. The aim of this paper is to present details on the processes and activities planned to integrate PPI into the qualitative research component of a mixed-methods, multi-site study evaluating the implementation of a smart template to promote personalised primary care for patients with multiple long-term conditions.

https://doi.org/10.1186/s40900-023-00440-7

June 2023

 Filling the gap in service provision. Partners as family carers to people with Parkinson's disease: A Scandinavian perspective

Hjelle   EG, Rønn-Smidt H, Haahr A, Haavaag SB, Sørensen D, Navarta-Sánchez MV,   Portillo MC, Bragstad LK

Objectives: The purpose of this study was to explore the expectations of and experiences with the public healthcare system of domestic partners of people with Parkinson`s disease (PD) in Denmark and Norway.

http://10.1177/17423953231174470

May 2023

The Causes and Impact of Crisis for People with Parkinson's Disease: A Patient and Carer Perspective

Fearn S, Bartolomeu Pires S, Agarwal V, Roberts HC, Spreadbury J, Kipps C.

21 June 2021

Background: The reasons for acute hospital admissions among people with Parkinson's disease are well documented. However, understanding of crises that are managed in the community is comparatively lacking. Most existing literature on the causes of crisis for people with Parkinson's disease (PwP) uses hospital data and excludes the individual's own perspective on the crisis trigger and the impact of the crisis on their care needs.

Objective: To identify the causes and impact of crises in both community and hospital settings, from a patient and carer perspective.

Methods: A total of 550 UK-based PwP and carers completed a survey on (a) their own personal experiences of crisis, and (b) their general awareness of potential crisis triggers for PwP.

Results: In addition to well-recognised causes of crisis such as falls, events less widely associated with crisis were identified, including difficulties with activities of daily living and carer absence. The less-recognised crisis triggers tended to be managed more frequently in the community. Many of these community-based crises had a greater impact on care needs than the better-known causes of crisis that more frequently required hospital care. PwP and carer responses indicated a good general knowledge of potential crisis triggers. PwP were more aware of mental health issues and carers were more aware of cognitive impairment and issues with medications.

Conclusion: These findings could improve care of Parkinson's by increasing understanding of crisis events from the patient and carer perspective, identifying under-recognised crisis triggers, and informing strategies for best recording symptoms from PwP and carers.

https://pubmed.ncbi.nlm.nih.gov/34250952/

What are the modifiable factors of treatment burden and capacity among people with Parkinson’s disease and their caregivers: A qualitative study

Qian Yue Tan , Helen C. Roberts, Simon D. S. Fraser, Khaled Amar, Kinda Ibrahim

March 30, 2023

Background

People with long-term conditions must complete many healthcare tasks such as take medications, attend appointments, and change their lifestyle. This treatment burden and ability to manage it (capacity) is not well-researched in Parkinson’s disease.

Objective

To explore and identify potentially modifiable factors contributing to treatment burden and capacity in people with Parkinson’s disease and caregivers.

Methods

Semi-structured interviews with nine people with Parkinson’s disease and eight caregivers recruited from Parkinson’s disease clinics in England (ages 59–84 years, duration of Parkinson’s disease diagnosis 1–17 years, Hoehn and Yahr (severity of Parkinson’s disease) stages 1–4) were conducted. Interviews were recorded and analyzed thematically.

Results

Four themes of treatment burden with modifiable factors were identified: 1) Challenges with appointments and healthcare access: organizing appointments, seeking help and advice, interactions with healthcare professionals, and caregiver role during appointments; 2) Issues obtaining satisfactory information: sourcing and understanding information, and satisfaction with information provision; 3) Managing medications: getting prescriptions right, organizing polypharmacy, and autonomy to adjust treatments; and 4) Lifestyle changes: exercise, dietary changes, and financial expenses. Aspects of capacity included access to car and technology, health literacy, financial capacity, physical and mental ability, personal attributes and life circumstances, and support from social networks.

Conclusions

There are potentially modifiable factors of treatment burden including addressing the frequency of appointments, improving healthcare interactions and continuity of care, improving health literacy and information provision, and reducing polypharmacy. Some changes could be implemented at individual and system levels to reduce treatment burden for people with Parkinson’s and their caregivers. Recognition of these by healthcare professionals and adopting a patient-centered approach may improve health outcomes in Parkinson’s disease.