Long Term Conditions publications

Reliability of the Spanish version of the pain beliefs and perceptions inventory among women with fibromyalgia in Catalonia, Spain

Sole S, Serrat M, Martinez-Rubio D,Martinez-Navarro O, Fuente-Vidal A, Bravo C et al

Fibromyalgia presents a significant challenge to individsuals due to its pervasive pain symptoms. The Pain Beliefs and Perceptions Inventory (PBPI) offers a structured tool to delve into the nuanced beliefs surrounding pain. We aim to explore the feasibility of a condensed version of PBPI in assessing pain perceptions among individuals living with fibromyalgia in Catalonia, Spain.

https://doi.org/10.1016/j.ssmmh.2025.100404

March 2025

Mixed methods scoping review of patients' experiences of urgent and emergency cancer care

Hurley-Wallace   AL, Defty J, Richardson A, Wagland R

Patients with oncological emergencies require immediate specialist cancer care to ensure optimum outcomes. This is often a stressful, time-sensitive situation for patients and their families who describe having to navigate complex care pathways to access urgent treatment. Acute oncology was established as a subspecialty in the UK in 2009, with the goal to streamline emergency cancer care. 

Patient experiences of urgent care in acute oncology contexts have not specifically been explored; hence, it is unknown whether patient experiences of emergency cancer care have improved. This may be due to lack of a patient-reported experience measure for this purpose.

https://doi.org/10.1007/s00520-025-09245-8

February 2025

Developing a Smart Sensing Sock to Prevent Diabetic Foot Ulcers: Qualitative Focus Group and Interview Study

Corser J, Yoldi I, Reeves ND, Culmer P, Venkatraman PD, Orlando G, Turnbull RP, Boakes P, Woodin E, Lightup R, Ponton G, Bradbury K

Diabetic foot ulcers are common and costly. Most cases are preventable, although few interventions exist to reliably support patients in performing self-care. Emerging technologies are showing promise in this domain, although patient and health care provider perspectives are rarely incorporated into digital intervention designs.

This study explored patient and health care provider feedback on a smart sensing sock to detect shear strain and alert the wearer to change their behavior (ie, pause activity and check their feet) and considered how patient experience and attitudes toward self-care are likely to impact uptake and long-term effective engagement with the device to curate guiding principles for successful future intervention development.

https://doi.org/10.2196/59608

February 2025

Cohort profile for the creation of the SAIL MELD-B e-cohort (SMC) and SAIL MELD-B children and Young adult e-cohort (SMYC)

Chiovoloni R, Dylag JJ, Alwan NA, Berrington A, Boniface M, Fair N, Holland E, Hoyle R, Shiranirad M, Stannard S, Zlatev Z, Owen RK, Fraser S, Akbari A.

We have established the SAIL MELD-B electronic cohort (e-cohort SMC) and the SAIL MELD-B children and Young adults e-cohort (SMYC) as a part of the Multidisciplinary Ecosystem to study Lifecourse Determinants and Prevention of Early-onset Burdensome Multimorbidity (MELD-B) project. Each cohort has been created to investigate and develop a deeper understanding of the lived experience of the 'burdensomeness' of multimorbidity by identifying new clusters of burdensomeness concepts, exploring early life risk factors of multimorbidity and modelling hypothetical prevention scenarios.

https://doi.org/10.1136/bmjopen-2024-087946

April 2024

Use of the chronic illness research recruitment taxonomy to evaluate recruitment strategies in an eHealth feasibility study.

Austin   RC, Lunde Husebø AM, Wathne H, Storm M, Urstad KH, Morken I, Karlsen B

Chronic illness research has many challenges making research recruitment difficult. Despite reports of facilitators and barriers to research recruitment challenges remain. The reporting of research strategies and their impact on recruitment and subsequent randomised control trials is not sufficient. 

A newly developed chronic illness research recruitment taxonomy (CIRRT) details factors and elements observed to impact recruitment around the components of Project, People, and Place. This paper aims to use the chronic illness research recruitment taxonomy to report and evaluate the recruitment strategies, impact they had on recruitment, and alterations to an eHealth feasibility study.

https://doi.org/10.1016/j.conctc.2024.101420

January 2025

Improving recruitment and retention of people with Parkinson's disease to clinical studies: A scoping review

Petty,   R, Agarwal V, Allison J, Bartolomeu-Pires S, Bartlett M, Boey T et al

Recruiting patients to clinical studies and ensuring participants complete them (known as “retention”) is challenging in Parkinson's disease (PD). If studies take longer this increases costs, and if the right people do not take part in studies this can mean that results may not be representative of the PD community. Our objective is to find out what effective strategies there are to support recruitment and retention to clinical research studies in PD. 

We reviewed literature within five study databases. We used the population, intervention, comparator, outcome and studies (PICOS) framework to create a search strategy based on our research question, and inclusion criteria for study selection. Important criteria were: (1) studies had to test a recruitment or retention strategy in a PD clinical research study, (2) studies had to provide evidence on how well the strategy worked. 

We found 4608 unique research papers, six of which described and evaluated recruitment strategies. No papers on retention strategies were found that met eligibility criteria. Successful recruitment strategies included digital marketing (n = 3), research registries (n = 3), supporting study sites (n = 1) and multiple sources to refer people with Parkinson's (PwP) to studies (n = 1). Recruitment of PwP from diverse backgrounds was enhanced by (1) online campaigns, (2) funders requesting that 10% of study participants come from diverse backgrounds 3) additional funding for research teams.

This scoping review identified methods that can be used to increase the rate and diversity of recruitment to PD clinical studies. Retention methodologies are under-researched.

https://doi.org/10.1177/1877718X241291986

January 2025

Medication review interventions for adults living with advanced chronic kidney disease: A scoping review

Pogson   CM, Austin R, Patel JP, Wheeler DC

Structured medication reviews (SMRs) were introduced into the National Health Service (NHS) Primary Care to support the delivery of the NHS Long-Term Plan for medicines optimization. SMRs improve the quality of care, reduce harm and offer value for money. However, evidence to support SMRs for patients with chronic kidney disease (CKD) stage G4-5D with elevated risk of cardiovascular disease and premature mortality is unknown. This scoping review aimed to assess the extent and nature of SMR research in the population of patients with CKD stage G4-5D

https://doi.org/10.1111/bcp.16363

December 2024

The effectiveness of digital tools to maintain physical activity among people with a long-term condition(s): A systematic review and meta-analysis

Howes S, Stephenson A, Grimmett C, Argent R, Clarkson P, Khan A, Lait E, McDonough LR, Tanner G, McDonough SM

Given the well-accepted health benefits, it is important to identify scalable ways to support people with long-term conditions (LTCs) to remain physically active. This systematic review aimed to evaluate the effect of digital tools on the maintenance of physical activity (PA) amongst this population.

https://doi.org/10.1177/20552076241299864

December 2024

The impact of living with multiple long-term conditions (multimorbidity) on everyday life - a qualitative evidence synthesis

Holland E, Matthews K, Macdonald S, Ashworth M, Laidlaw L, Cheung KSY, Stannard S, Francis NA, Mair FS, Gooding C, Alwan NA, Fraser SDS

Multiple long-term conditions (MLTCs), living with two or more long-term conditions (LTCs), often termed multimorbidity, has a high and increasing prevalence globally with earlier age of onset in people living in deprived communities. A holistic understanding of the patient's perspective of the work associated with living with MLTCs is needed. This study aimed to synthesise qualitative evidence describing the experiences of people living with MLTCs (multimorbidity) and to develop a greater understanding of the effect on people's lives and ways in which living with MLTCs is 'burdensome' for people.

https://doi.org/10.1186/s12889-024-20763-8

December 2024

Trajectories of functional limitations, health-related quality of life and societal costs in individuals with long COVID: a population-based longitudinal cohort study

Wang J, Goodfellow H, Walker S, Blandford A, Pfeffer P, Hurst JR, Sunkersing D, Bradbury K, Robson C, Henley W, Gomes M

Long COVID, as defined by the National Institute for Health and Care Excellence, refers to the persistence of symptoms lasting for at least 12 weeks following COVID-19 infection. It has been suggested that at least 1 in 10 patients who had COVID-19 experiences long COVID symptoms. By March 2024 (latest figures made available by the Office for National Statistics), an estimated 2 million people in the UK (3.3% of the population) reported experiencing symptoms consistent with long COVID. These symptoms have a particularly significant impact on the working-age population, leading to both absenteeism (productivity loss due to time off work) and presenteeism (lower productivity due to illness while working). It has been estimated that these productivity losses amounted to £5.7 billion in the UK between 2022 and 2023.

This paper reports on the trajectories of functional limitations, fatigue, health-related quality of life (HRQL) and societal costs within the first 6 months after registration in the Living With Covid Recovery programme. In addition, we investigate whether these trajectories differ according to patient characteristics or the extent of the individuals’ participation in the LWCR programme.

https://doi.org/10.1136/bmjopen-2024-088538

November 2024

Subthalamic Stimulation Improves Short-Term Satisfaction with Life and Treatment in Parkinson's Disease

Sauerbier A, Bachon P, Ambrosio L, Loehrer PA, Rizos A, Jost ST, Gronostay A, Fink GR, Ashkan K, Nimsky C, Visser-Vandewalle V, Chaudhuri KR, Timmermann L, Martinez-Martin P, Dafsari HS; EUROPAR, the Non-Motor Parkinson’s Disease Research Group and the German Parkinson Society Non-Motor Symptoms Study Group

The effect of subthalamic stimulation (STN-DBS) on patients' personal satisfaction with life and their Parkinson's disease (PD) treatment is understudied, as is its correlation with quality of life (QoL). Therefore, we tested the hypothesis that STN-DBS for PD enhances satisfaction with life and treatment. In a prospective, multicenter study with a 6-month follow-up involving 121 patients, we measured the main outcomes using the Satisfaction with Life and Treatment Scale (SLTS-7)

https://doi.org/10.3390/jpm14101023

October 2024

Are people living with Huntington's disease experiencing person-centered integrated care?

Bartolomeu-pires   S, Kunkel D, Goodwin N, Dace S, Culliford D, Kipps C

Huntington's disease (HD) is among the most complex long-term neurological conditions, necessitating care and management from multiple partners within and beyond the health sector. However, there is a paucity of evidence describing how individuals receive this multifaceted care and whether current care provision adequately meets their needs. 

Our objective was to understand if current care provision is meeting the complex needs of people living with HD in England and assess their perceived need for integrated care.

https://doi.org/10.1177/18796397241288449

October 2024