Long Term Conditions publications

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

Marín-Maicas P, Ambrosio L, Corchon S, González-Moreno J, Portillo MC

Living with long-term conditions: validation of a new instrument for family   caregivers in a Spanish-speaking population

Optimising the management of chronicity has been a global challenge for decades. Individuals with long-term conditions (LTCs) and their families live with them for years. Thus, it is necessary to include both of their perspectives in the management and adaptation of the interventions proposed. The psychometric properties of the living with LTCs scale from the perspective of the family caregiver are unknown. The objective of the present study is to describe the psychometric properties of the EC-PC-Fam in a Spanish-speaking population.

https://doi.org/10.1136/bmjopen-2024-088773

September 2024

Care for sexual health in oncology survey: Discussions about sexual health with people with cancer in the context of the obligation to provide informed consent

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

The purpose of this paper is to describe the impacts of cancer treatment on sexual health in a sample of people who had been treated for mixed types of cancer; to describe discussions they had with professionals about sexual health that occurred during cancer care; and to consider the extent to which these discussions were sufficient to enable participants to give informed consent for the sexual side effect of cancer treatment.

https://doi.org/10.1016/j.ejon.2024.102669

August 2024

What services are currently provided to people with HFpEF in the UK and what are their components? A protocol for a scoping literature review

Forsyth F, Deaton C, Kalra PR, Green M, Harrison ME, Tavares S, Dirksen A, Kuhn I, Farquharson B, Austin RC

Heart failure with preserved ejection fraction (HFpEF) is increasing in incidence and is increasingly the most common heart failure (HF) diagnosis. Patients with HFpEF are often excluded from specialist HF services which has negative impacts on their healthcare experiences and health-related outcomes. As emerging evidence-based treatments are being incorporated into clinical guidelines, it is timely to focus on the management of this phenotype. 

This review aims to explore literature around care provision for HFpEF in the United Kingdom; to characterise and assess HFpEF care pathways against current standards, and to generate evidence to create an optimised framework of care.

https://doi.org/10.1093/eurjcn/zvae119

August 2024

Systematic review and narrative synthesis of the experiences of individuals with chronic pain participating in digital pain management interventions

Strain   JDR, Welch L, Sadler E

The use of digital pain management interventions has grown since the Covid 19 pandemic. The aim of this study was to systematically review and synthesise evidence from qualitative studies regarding the experiences of individuals with chronic pain participating in digital pain management interventions in primary care and community settings.

https://doi.org/10.1371/journal.pone.0306455

July 2024