Long Term Conditions publications

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

Beyond individual responsibility: Exploring lay understandings of the contribution of environments on personal trajectories of obesity

Serrano-Fuentes N, Rogers A, Portillo MC

Reversing the upward trajectory of obesity requires responding by including the multiple influences on weight control. Research has focused on individual behaviours, overlooking the environments where individuals spend their lives and shape lifestyles. Thus, there is a need for lay understandings of the impact of environments as a cause and solution to obesity. This research aimed to understand the influence of environments on the adoption of health practices in adults with obesity and to identify lay strategies with which to address environmental barriers to behaviour change.

https://doi.org/10.1371/journal.pone.0302927

May 2024

 Interventions to Foster Resilience in Family Caregivers of People with Alzheimer's Disease: A Scoping Review.

Santonja-Ayuso   L, Corchón-Arreche S, Portillo MC

The family caregiver of a person with Alzheimer's disease still experiences, in most cases, negative consequences in their biopsychosocial environment, which are related to the acquisition of this role. 

However, it has been observed that this fact is not universal in this type of population since benefits can be obtained in the act of caring through the development of resilience. Given this possibility and given that nurses are the health professionals who support people in this illness process, there is an urgent need to identify which non-pharmacological interventions could improve or promote resilience in family caregivers of people with Alzheimer's disease.

https://doi.org/10.3390/ijerph21040485

April 2024

Methodological Proposal for the Adaptation of the Living with Long-Term Conditions Scale to the Family Caregiver

Marín-Maicas   P, Portillo MC, Corchón S, Ambrosio L

Caring for people living with LTCs has a negative impact on the quality of life of caregivers, affecting their psychological, emotional, social, physical, and financial well-being. Evaluating how the family caregivers live with LTC can provide social health professionals with important information when planning interventions that favor better living . Therefore, it would be useful to have a tool available that allows for objectifying the degree to which people live with LTCs, for both the individuals affected by LTCs and the family caregiver. 

Presently, many scales exist that allow for measuring different concepts in family caregivers.However, although an instrument exists that measures the degree of living with LTC, according to the people with LTCs the “Living with Chronic Illness Scale” , no instrument was found that measures the degree of living with LTCs of family caregivers that includes all the dimensions that shape said process. This gap in the literature, in relation to measurement instruments that evaluate how the family caregiver experiences living with LTCs, is the common thread in this work. 

Based on an instrument created for people living with LTCs, an adaptation of this scale was planned to extend the reach of the instrument to family caregivers. Numerous recommendations exist on the process of adaptation of a scale to a context different from which it was created, but the available guides only refer to the methodological process for their transcultural adaptation, and especially to the guidelines established that allow the use of the scale in a language that is different from the one used for its creation. However, no specific system with the necessary methodological steps to be taken for the adaptation of the EC-PC to the family caregiver was found. 

Therefore, the aim of this study is to present a detailed description of the methodological process of adapting the EC-PC to the family caregiver (EC-PC-Family), providing transparency to the process followed to construct a robust instrument, to contribute towards filling the gap found in the scientific literature.

https://doi.org/10.3390/nursrep14010041

March 2024

Change in treatment burden among people with multimorbidity: a follow-up survey

Hounkpatin HO, Roderick P, Harris S, Morris JE, Smith D, Walsh B, Roberts HC, Dambha-Miller H, Tan QY, Watson F, Fraser SD

Background: Treatment burden is the effort required of patients to look after their health and the impact this has on their functioning and wellbeing. Little is known about change in treatment burden over time for people with multimorbidity.

Aim: To quantify change in treatment burden, determine factors associated with this change, and evaluate a revised single-item measure for high treatment burden in older adults with multimorbidity.

https://doi.org/10.3399/bjgp.2022.0103

October 2022

Person-centred integrated care for people living with Parkinson's, Huntington's and Multiple Sclerosis: A systematic review

Bartolomeu Pires S,  Kunke Dl, Kipps   C, Goodwin N, Portillo MC

People living with long-term neurological conditions (LTNCs) have complex needs that demand intensive care coordination between sectors. This review aimed to establish if integrated care improves outcomes for people, and what characterises successful interventions.

https://doi.org/10.1111/hex.13948

January 2024