Long Term Conditions publications

Treatment Decision-Making in West African Women With Breast Cancer: A Critical Ethnography

Shewbridge A, Wiseman T, Richardson A

This study aimed to understand and characterize how culture affected behavior and decision-making about treatment and care in West African women with breast cancer living in the United Kingdom.

A critical ethnographic design was used with a sample consisting of 32 West African women, 27 supporters, and 18 health care professionals. Data were collected through 263 hours of participant observation and 98 informal and 10 formal interviews in a London cancer unit. Study materials and approach were informed by patient and public involvement group recommendations. Data were analyzed using an adapted Carspecken critical ethnographic approach.

https://doi.org/10.1016/j.soncn.2025.151878

April 2025

Risk factors for ill health: How do we specify what is 'modifiable'?

Alwan NA, Stannard S, Berrington A, Paranjothy S, Hoyle RB, Owen RK, Fraser SDS

If you work in public health or epidemiology, you will be familiar with the term ‘modifiable risk factors’. Searching PubMed in December 2023 for titles that included the term ‘modifiable risk’ returned 1222 results. Expanding this search to include both titles and abstracts returned 13,958 results. The term often refers to health behaviours such as smoking, alcohol intake, exercise, and diet. However, there does not seem to be a specific definition of what is classed as ‘modifiable’ in the context of the risk of ill health. Although the term is also used to refer to factors indirectly affecting health, such as education or housing, current use tends to focus on individual behaviours, largely neglecting the role of systemic and structural determinants of disease and health inequities.

https://doi.org/10.1371/journal.pgph.0002887

March 2024

Mapping domains of early life determinants of future multimorbidity across three UK longitudinal cohort studies

Stannard S, Berrington A, Fraser SDS, Paranjothy S, Hoyle RB, Owen RK, Akbari A, Shiranirad M, Chiovoloni R, Alwan NA

Many studies use a reductionist approach to isolate the influence of one factor in childhood on multimorbidity rather than consider the combined effect of wider determinants. We explored how potential multiple early life determinants of multimorbidity can be characterised across three UK cohort studies. We used the National Child Development Study (NCDS), the 1970 British Cohort Study (BCS70), and the Aberdeen Children of the 1950s Study (ACONF) to identified early life variables that fit into 12 conceptualised domains of early life determinants of multimorbidity. Variables were assigned into 12 domains; principal component analysis reduced the dimensionality of the data and structured variables into subgroups. The data audit identified 7 domains in ACONF, 10 domains in NCDS and 12 domains in BCS70. Dominant components included maternal fertility histories within the prenatal, antenatal and birth domain, long-term illnesses within the child health domain, educational ability within the child education and health literacy domain, ethnicity within the demography domain, parental health behaviours within the transgenerational domain, housing within the socioeconomic domain and parental-child interactions within the parental-family domain. We demonstrated that if multiple large scale longitudinal studies are used, there is enough data available for researchers to consider conceptualising early life risk factors of multimorbidity across groups or domains. Such conceptualisation can help challenge the existing understanding of disease aetiology and develop new ideas for prevention of multimorbidity.

https://doi.org/10.1038/s41598-024-72275-5

September 2024

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