Long Term Conditions publications

A mixed-methods study to explore the modifiable aspects of treatment burden in Parkinson’s disease and develop recommendations for improvement

Tan QY, Ibrahim K, Roberts HC, Amar K, Fraser SDS

People with Parkinson's (PwP) and their caregivers have to manage multiple daily healthcare tasks (treatment burden). This can be challenging and may lead to poor health outcomes.

The objective of this study was to assess the extent of treatment burden in Parkinson's disease(PD), identify key modifiable factors, and develop recommendations to improve treatment burden.

https://doi.org/10.1371/journal.pone.0338620

December 2025

eHealth interventions to support colorectal cancer patients' self-management after discharge from surgery-an integrative literature review

Husebø ALM, Søreide JA, Kørner H, Storm M, Wathne HB, Richardson A, Morken IM, Urstad KH, Nordfonn OK, Karlsen B

Colorectal cancer (CRC) creates elevated self-management demands and unmet support needs post-discharge. Follow-up care through eHealth post-primary surgery may be an effective means of supporting patients' needs. This integrative review describes the evidence regarding eHealth interventions post-hospital discharge focusing on delivery mode, user-interface and content, patient intervention adherence, impact on patient-reported outcomes and experiences of eHealth.

https://doi.org/10.1007/s00520-023-08191-7

Dcember 2023

A Co-Produced Stakeholder Workshop to Identify Key Time Points and Targets for Life-Course Prevention of Multiple Long-Term Conditions

Stannard S, Wilkinson R, Gill JK, McMahon J, Welch J, Fraser SDS, Alwan NA

The MELD-B project is a multidisciplinary research consortium with one of its aims focused on identifying childhood targets for the prevention of multiple long-term conditions (MLTCs). Drawing upon the expertise of policy and practice stakeholders can inform research questions, data analysis, and contribute to meaningful and practical outputs. In pursuit of this collaborative approach, a stakeholder workshop, co-designed with people with lived experience, was conducted to inform the next steps of the early prevention workstream of the MELD-B project.

https://doi.org/10.1111/hex.70475

December 2025

Understanding the potential role of Social Prescribing Link Workers in supporting identified needs of people with physical and mental long-term conditions: a qualitative study

Linceviciute S, Ambrosio L, Baldwin DS, Portillo MC

The Social Prescribing Link Worker (SPLW) approach is a means for supporting individuals and communities with diverse needs, with its reach and impact widely recognised in health and community systems. However, SPLW support for people with long-term physical and mental health conditions (P + MH LTCs) has been variable and there are knowledge gaps such as unheard voices of those with a varied engagement in SPLW support.

We undertook a study to better understand the potential relevance of SPLW support for addressing the needs of individuals with P + MH LTCs. Its aim was to explore a range of health and psychosocial needs of people living with P + MH LTCs and to examine perspectives on how the SPLW role supports the complex needs of this group.

https://doi.org/10.1186/s12875-025-02990-z

November 2025

Modelling the joint impact of early-life interventions on adult health: an illustrative example of multiple long-term conditions with role limitations in midlife using the 1970 British Cohort Study (BCS70)

Stannard S, Berrington A, Ziauddeen N, Fraser SDS, Paranjothy S, Owen RK, Alwan NA

Evidence on how policy interventions early in childhood can prevent or delay multiple long-term conditions (MLTCs) is limited. We modelled prevention scenarios using five early-life domains on the outcome of MLTCs with role-limitation using effectiveness data of combined real-life early interventions.

https://doi.org/10.1186/s12916-025-04467-3

November 2025

Management of Parkinson's in the Community: Interests and Expectations of People Living with Parkinson's, Family Carers, Healthcare Professionals and Stakeholders in Spain.

Pedraz-Marcos   A, Palmar-Santos AM, Portillo MC, Navarta-Sánchez MV

This study aimed to explore the interests and expectations of people living with Parkinson’s disease (PD), family carers, health and social care professionals, and key stakeholders regarding relevant systems of support and community resources for PD management. As part of the OPTIM-PARK project (Optimisation of Community Resources and Systems of Support to Enhance the Process of Living with PD), an exploratory qualitative study was conducted in Spain. 

Forty-one participants completed a GENIE concentric circles mapping exercise to identify existing support systems and community resources. These maps informed subsequent semi-structured interviews. All interviews were digitally recorded and transcribed verbatim for thematic analysis. Participants identified several barriers to effective collaboration across healthcare and social care systems, including poor understanding of PD, limited financial resources, and insufficient communication among professionals and sectors. Facilitators for improved community-based PD management included personalised care pathways, shared decision-making, improved access to professional services and local resources, and the strategic use of Information and Communication Technologies (ICTs). Participants emphasised the need for long-term investment and strong institutional commitment to reinforce community-based support networks for individuals living with PD.

https://doi.org/10.1177/23333936251384434

November 2025

Safety, feasibility and efficacy of exercise as an airway clearance technique in cystic fibrosis: a randomised pilot feasibility trial

Urquhart DS, Taylor E, Cunningham S, Lewis S, Neilson AR, Soilemezi D, Ensor H, Vogiatzis I, Allen LJ, Saynor ZL; ExACT-CF Study Group

Cystic fibrosis (CF) is an inherited disorder characterised by thick mucus accumulation in vital organs. Clearing secretions from the lungs through airway clearance techniques (ACTs), such as chest physiotherapy, combined with mucoactive agents, is essential to prevent recurrent infections and airway inflammation that may lead to airway obstruction and mucus plugging, airway damage, loss of respiratory function and eventual respiratory failure. ACTs employ various methods and devices to remove excess mucus secretions, aiming to alleviate airway obstruction and prevent respiratory tract infections, as well as to re-expand atelectatic areas, improve gas exchange and reduce inflammation.

For over 60 years, performing regular chest physiotherapy has been central to CF care. Standard practice globally involves at least daily chest physiotherapy, increasing during exacerbations. To meet the diverse needs of people with CF (pwCF), chest physiotherapy as ‘usual care’ for airway clearance encompasses a variety of techniques, including positive expiratory pressure, oscillating devices, active cycle of breathing techniques and autogenic drainage. 

Despite the range of available options, chest physiotherapy is often performed with low quality. Many pwCF find it both time-consuming and burdensome,leading to poor adherence. The landscape of CF has changed with widespread availability of highly effective modulator therapy (HEMT), which reduces exacerbations and improves life expectancy, prompting exploration of alternative approaches to reduce treatment burden.

Exercise is emerging as a potential alternative to ACT, acting to enhance mucociliary clearance and facilitate secretion removal. Structured exercise is already a recommended component of ‘usual care’ for pwCF, with aerobic exercise capacity being an important survival predictor. While current usual care recommendations advocate exercise in addition to chest physiotherapy, pwCF are already changing their approach based on preference to either incorporate exercise into their airway clearance regimens or to omit chest physiotherapy if they exercise. This preference underscores the need to investigate exercise as a primary ACT, engaging with patient priorities to address the question of whether exercise could replace chest physiotherapy, a priority highlighted by the James Lind Alliance.

Whether exercise alone can serve as an effective ACT remains unknown.

A recent UK Delphi consensus defined a bespoke exercise as an ACT (ExACT) intervention, proposing it as a potential substitute for chest physiotherapy during stable periods, that warranted further study. ExACT involves >20 minutes of aerobic exercise inducing deep breathing and is performed by predominantly weight-bearing exercise types that incorporate vibration. Huffing and coughing (forced expiratory techniques) are integral to ExACT, with pre- and post-session breaths to check for, and remove mucus. ExACT is self-administered, promoting independence and flexibility. Combining daily exercise and ACT recommendations as ‘ExACT’ could yield significant time savings and health benefits. With the widespread availability of HEMT, such as Elexacaftor/Tezacaftor/Ivacaftor (ETI), realigning treatment burden is now a top priority in CF care. High-quality evidence is needed to guide clinical practice.

The ‘Exercise as an Airway Clearance Technique in CF (ExACT-CF)’ randomised pilot trial aimed to test the primary hypothesis of the feasibility and acceptability of the ExACT intervention when compared with usual care, together with safety and early signals of efficacy.

https://doi.org/10.1136/thorax-2025-223080

October 2025

Design and deployment of digital health interventions to reduce the risk of the digital divide and to inform development of the living with COVID recovery: a systematic scoping review.

Hamilton FL, Imran S, Mahmood A, Dobbin J, Bradbury K, Poduval S, Scuffell J, Thomas F, Stevenson F

Digital health interventions can support health-related knowledge transfer, for example through websites or mobile applications, and may reduce health inequalities by making health care available, where access is difficult, and by translating content to overcome language barriers. However, digital health intervention can also increase health inequalities due to the digital divide. To reach digitally excluded populations, design and delivery mechanisms need to specifically address this issue. 

This review was conducted during the evolving COVID-19 pandemic and informed the rapid design, deployment and evaluation of a post-COVID-19 rehabilitation digital health intervention: 'Living with COVID Recovery' (LWCR). LWCR needed to be engaging and usable for patients and to avoid exacerbating health inequalities. LWCR was introduced as a service into 33 NHS clinics, was used by 7679 patients, and evaluation ran from August 2020 to December 2022.

https://doi.org/10.3310/gjhg1331

October 2025

Understanding the tightrope walk between interoception sensibility and hypervigilance in cardiovascular diseases

Burnett D, Austin RC

Self-care of cardiovascular diseases (CVD) has been recommended as a core competent to treatment strategies for years. Although self-care is not a new concept, studies on interventions to improve self-care in those with CVD often have mixed results. The recent publication lead by Giulia Locatelli presented data on the associations between interoception and self-care in people with CVD. The aim of this commentary is to provide a summary of their article, discuss the tightrope between interoception and hypervigilance, critically examine the paper, and finally discuss how this research contributes to the evidence base.

https://doi.org/10.1093/eurjcn/zvaf180

October 2025

Mapping how responsibility for poor diets is framed in the United Kingdom: a scoping review

Serrano-Fuentes N, Ellett L, Vogel C, Baird J, Tavares N, Portillo MC

The United Kingdom (UK) has diets with the highest proportion of ultra-processed food in  Europe . The population’s diet is also too high in carbohydrates, total fats, saturated fats,  salt and free sugars, and does not meet fibre, protein and potassium recommendations. This  suboptimal nutrition underlies an increase in diet-related conditions, such as obesity, type 2  diabetes, cardiovascular disease, and several types of cancer, and the financial costs attached  to them. In the UK, the combined cost of obesity and associated health issues in reducing  life expectancy, National Health Service (NHS) funds, and lost workforce productivity is £98 billion yearly.

A major cause of poor diets is the influence of the obesogenic food environment. This term  describes settings in which unhealthy food is widely accessible, available and affordable,  creating conditions that drive people to make unhealthy food choices and fuelling obesity at a  population level.

Evidence shows that government enforced regularatory approaches improve obesogenic food environments by levelling the playing field. In contrast, industry-led  voluntary or corporate social responsibility initiatives like the Public Health Responsibility  Deal (2011-2015) have proven ineffective.

While many working in the field of public health are calling for stronger government  regulation of the food industry, this effort faces significant barriers without greater public  support for these policies. Public support may be limited by a critical disconnect. 

While research  evidence demonstrates that environmental and commercial factors are primary drivers of poor  diets, many citizens may largely perceive that individuals are responsible for their food  choices. Understanding this disconnect requires examining how responsibility is framed across the  key domains that shape public understanding in their everyday lives. If responsibility framing fails to acknowledge societal barriers and instead  emphasises individual choice, it may perpetuate stigma and reduce support for policies that  could address the root causes of dietary inequalities

This study aims to address these evidence gaps by conducting the first systematic synthesis of  how responsibility for poor diets is framed across public perceptions, mass media, and  government policy in the UK, with particular attention to the representation of  socioeconomically disadvantaged groups.

https://doi.org/10.1017/s1368980025101079

September 2025

Care for sexual health in oncology survey: a regression analysis of variables associated with the likelihood of people with cancer having a sexual health discussion with the hospital cancer team

Sheppard S, Culliford D, Glen T, Lee S, Sheppard ZA, Porter S

Despite high levels of sexual dysfunction following cancer treatment, people with cancer report that sexual health is infrequently discussed during cancer care. Reasons for this infrequency have been identified in the qualitative literature. The purpose of this paper is to identify statistically significant barriers to, or facilitators of sexual health care identified by people with cancer.

https://doi.org/10.1016/j.ejon.2025.102977

September 2025

Taxonomy of chronic illness research recruitment: a restricted scoping review

Austin RC, Karlsen B, Richardson A, Elwyn G, Storm M, Husebø AML, Urstad KH

Chronic illness prevalence is increasing and research recruitment in these populations remains challenging. Individuals with chronic illness often have poorer quality of life, restricted access to hospitals where research occurs, and can be reluctant to participate. Researchers need multiple simultaneous strategies to achieve success. 

No taxonomy of recruitment factors in chronic illness research could be identified in the literature. This paper aims to describe a comprehensive taxonomy of recruitment for chronic illness research (inclusive of a nursing focus) to inform the design and reporting of recruitment strategies by creating a list of practical questions.

https://doi.org/10.1186/s12913-025-13115-8

July 2025