Long Term Conditions publications

Misaligned or misheard? Physical activity and healthy eating messaging to ethnic minority communities during the COVID-19 pandemic: A qualitative study and scoping review

Gafari O, Agyapong-Badu S, Alwan NA, Tully MA, McDonough S, Stokes M, Barker M

This mixed-methods study identified physical activity (PA) and healthy eating messages produced during the COVID-19 pandemic and explored how they were received by UK ethnic minority communities. A scoping review of research and grey literature identified categories of PA and healthy eating messaging targeted at ethnic minorities. Individual and group interviews were conducted, audio-recorded, transcribed and analysed using inductive thematic analysis. There was active community engagement in all study phases to ensure relevance and co-production of findings.

Interviews were held with 41 study participants aged 18–86 years (20 men) residing in England and Wales using digital conferencing and in person. The scoping review identified 24 records containing messages grouped into three categories: 1) PA messages; 2) healthy eating messages; 3) risk messages. Five themes described participants’ views of these messages: 1) lack of awareness of messaging; 2) responses to PA messaging; 3) responses to healthy eating messaging; 4) perceptions of risk messaging and 5) perceptions of conflict in messages. 

The review revealed that physical activity and healthy eating messaging specifically targeting ethnic minority communities is limited. This limited messaging was almost entirely missed by these communities. When received, the messaging was not interpreted as intended, perceived to be conflicting and risk messaging was perceived as blaming. More work with ethnic minority communities needs to be done to co-produce meaningful and appropriate PA and healthy eating messaging in a timely manner

https://doi.org/10.1371/journal.pgph.0003345

OCtober 2024

Building trust and increasing inclusion in public health research: co-produced strategies for engaging UK ethnic minority communities in research

Gafari O, Bahrami-Hessari M, Norton J, Parmar R, Hudson M, Ndegwa L, Agyapong-Badu S, Asante KP, Alwan NA, McDonough S, Tully MA, Calder PC, Barker M, Stokes M

Involving members of the public in health and medical research is important to improve quality, outcomes and applicability of research. Public involvement contributes to an effective translation of research findings for public health improvement, therefore improving health equity and reducing health research waste. Although different terminologies are used to formally describe the involvement of the public in research, the term patient and public involvement and engagement (PPIE), most widely used in the UK is adopted for the purposes of the present article. This article is to suggest methods for addressing the lack of diversity in public representation in research.

https://doi.org/10.1016/j.puhe.2024.05.007

August 2025

Capturing the human impact of living with multiple long-term conditions in routine electronic health records – lost in translation?

Fraser   SD, Holland E, Laidlaw L, Francis NA, Macdonald S, Mair FS et al

Living with multiple long-term conditions (MLTCs) involves ‘work’. A recent qualitative synthesis identified eight patient-centred work themes: ‘learning and adapting’, ‘accumulation and complexity’, ‘investigation and monitoring’, ‘health service and administration’ and ‘symptom’, ‘emotional’, ‘medication’ and ‘financial’ work. These themes may be underrepresented in electronic health records (EHRs). 

This study aimed to evaluate the representation of these themes and their constituent concepts in EHR data in a general population and among individuals with history of a mental health condition.

https://doi.org/10.1177/26335565251329869

April 2025

In-shoe plantar temperature, normal and shear stress relationships during gait and rest periods for people living with and without diabetes

Haron A, Li L, Shuang J, Lin C, Mansoubi M, Shi X, Horn D, Reeves N, Bowling F, Bradbury K, Eccles A, Dogan S, Dawes H, Cooper G, Weightman A

Diabetic foot ulcers (DFUs) are a common complication of diabetes. This study aims to investigate the relationships between in-shoe plantar temperature, normal and shear stress during walking and rest periods for participants with and without diabetes. 

For this purpose, a novel temperature, normal and shear stress sensing system was developed and embedded in an insole at the hallux, first metatarsal head and calcaneus region. Ten participants living with diabetes with no history of previous ulceration and ten healthy participants were recruited. Participants walked on a treadmill for 15 min and then rested for 20 min wearing the sensing insole. Results showed high correlation (Spearman’s rs ≥ 0.917) between heat energy, total plantar temperature change, during walking and strain energy, cumulative stress squared in all participants. Importantly, between-group comparisons showed indications of thermal regulation differences in participants with and without diabetes, with the first metatarsal head site showing significantly higher temperature at the end of the active period (P = 0.0097) although walking speed and mechanical stress were similar. 

This research demonstrates for the first time the correlation between strain energy and heat energy in-shoe during gait. Further research is needed to quantify relationships and investigate thermal regulation as a mechanism for DFU formation.

https://doi.org/10.1038/s41598-025-91934-9

March 2025

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