Management Of Long-term Conditions Research Articles

Supporting long-term condition management: a workflow framework for the co-development and operationalization of machine learning models using electronic health record data insights.

The prevalence of long-term conditions such as cardiovascular disease, chronic obstructive pulmonary disease (COPD), asthma, and diabetes mellitus is rising. These conditions are leading sources of premature mortality, hospital admission, and healthcare expenditure. Machine learning approaches to improve the management of these conditions have been widely explored, with data-driven insights demonstrating the potential to support earlier diagnosis, triage, and treatment selection. The translation of this research into tools used in live clinical practice has however been limited, with many projects lacking clinical involvement and planning beyond the initial model development stage. To support the move toward a more coordinated and collaborative working process from concept to investigative use in a live clinical environment, we present a multistage workflow framework for the co-development and operationalization of machine learning models which use routine clinical data derived from electronic health records. The approach outlined in this framework has been informed by our multidisciplinary team's experience of co-developing and operationalizing risk prediction models for COPD within NHS Greater Glasgow & Clyde. In this paper, we provide a detailed overview of this framework, alongside a description of the development and operationalization of two of these risk-prediction models as case studies of this approach.

Project Health Resilience: a health literacy programme for 16–19-year-olds delivered by doctors

Abstract Background Project Health Resilience is an education-setting based health literacy pilot for Londoners aged 16-19. This is a transitional age when young people independently engage with health services. Greater health literacy levels improve use of preventive services, successful management of long-term health conditions and reduce emergency service use. Research during the COVID pandemic also demonstrated the importance of building trust with health professionals to reduce health inequalities. The impact of poor health literacy is observed universally. This intervention was developed to empower young people at a critical time. Methods 3 bespoke modules (healthcare access; medical emergencies; mental health resilience) were co-produced with young people and delivered by doctors. During 2023, 46 sessions were carried out with 712 attendances across 8 London settings. A mixed-methods approach, including questionnaires and interviews, was used for the evaluation. The study explored whether taking part resulted in increased awareness of services, knowledge, confidence and trust in health professionals. Results Participants reported that topics filled a crucial gap in their learning. Awareness and confidence increased for: awareness of different health services (increase of 18%) and mental health services (38%), confidence calling emergency services (13%), confidence dealing with medical (34%) or mental health emergencies (40%). Knowledge questions answered correctly increased across the 3 modules (46% pre vs 60% post). Trust levels increased and findings suggest that doctors delivering sessions was a key component. Conclusions Findings add to the evidence base around education-setting based health interventions improving health literacy. Providing a unique opportunity for adolescents to engage with health professionals can increase trust levels. Doctors delivering health education at this critical age is a pioneering model which can be replicated in other settings. Key messages • Health literacy education is particularly impactful at this critical age of transition; this can contribute to reducing health inequities across the life course. • Trust, collaboration, and co-production were core principles upon which this pilot thrived. Without input from young people, it is difficult to design appropriate and impactful interventions.

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

IntroductionOptimising 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...

Challenges to quality in contemporary, hybrid general practice: a multi-site longitudinal case study.

Since 2022, general practice has shifted from responding to the acute challenges of COVID-19 to restoring full services using a hybrid of remote, digital, and in-person care. To examine how quality domains are addressed in contemporary UK general practice. Multi-site, mostly qualitative longitudinal case study, placed in UK national policy context. Data were collected from longitudinal ethnographic case studies of 12 general practices (2021-2023), multi-stakeholder workshops, stakeholder interviews, patient surveys, official reports, and publicly accessible patient experience data. Data were coded thematically and analysed using multiple theories of quality. Quality efforts in UK general practice occur in the context of cumulative impacts of financial austerity, loss of resilience, increasingly complex patterns of illness and need, a diverse and fragmented workforce, material and digital infrastructure that is unfit for purpose, and physically distant and asynchronous ways of working. Providing the human elements of traditional general practice (such as relationship-based care, compassion, and support) is difficult and sometimes even impossible. Systems designed to increase efficiency have introduced new forms of inefficiency and have compromised other quality domains such as accessibility, patient-centredness, and equity. Long-term condition management varies in quality. Measures to mitigate digital exclusion (such as digital navigators) are welcome but do not compensate for extremes of structural disadvantage. Many staff are stressed and demoralised. Contemporary hybrid general practice features changes (digitalisation, physical distancing, extension of roles, and protocolisation) that have had the unintended effect of dehumanising, compromising, and fragmenting care. Policymakers and practices should urgently address the risks to patients and the traditional core values of general practice should be urgently addressed.

PEER CONNECT: a pragmatic feasibility randomised controlled trial of peer coaching for adults with long-term conditions

ObjectiveTo test the feasibility of a targeted peer coaching intervention on the health and well-being of people with long-term health conditions and low activation attending outpatient clinics at a UK...

The effectiveness of social prescribing in the management of long-term conditions in community-based adults: A systematic review and meta-analysis

Objective The objective of this systematic review and meta-analysis was to evaluate the effectiveness of social prescribing interventions in the management of long-term conditions in adults. Data sources Eleven electronic databases were searched for randomised and quasi-randomised controlled trials. Review Methods Outcomes of interest were quality of life, physical activity, psychological well-being and disease-specific measures. Bias was assessed with the Cochrane Risk of Bias 2 tool. A narrative synthesis and meta-analysis were performed. Results Twelve studies (n = 3566) were included in this review. Social prescribing interventions were heterogeneous and the most common risks of bias were poor blinding and high attrition. Social prescribing interventions designed to target specific long-term conditions i.e., cancer and diabetes demonstrated significant improvements in quality of life (n = 2 studies) and disease-specific psychological outcomes respectively (n = 3 studies). There was some evidence for improvement in physical activity (n = 2 studies) but most changes were within group only (n = 4 studies). Social prescribing interventions did not demonstrate any significant changes in general psychological well-being. Conclusion Social prescribing interventions demonstrated some improvements across a range of outcomes although the quality of evidence remains poor.

The Lived Experience of Informal Caregivers of People Who Have Severe Mental Illness and Coexisting Long-Term Conditions: A Qualitative Study.

People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long-term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carersand a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout. This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically. We identified two overarching themes and five subthemes. The themes included 'Fighting on all fronts: Mounting strain between demands and resources', which described the challenge of providing care in the context of coexisting SMI and LTCs, and 'Safekeeping: The necessity of chronic hypervigilance', which captured how informal carers' roles were defined by managing high-risk situations, leading to hypervigilance and paternalistic approaches to care. The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influencecaregiver burden. Our PPI panel DIAMONDS Voice provided guidance on this study fromconception, designand development of interview guides and recruitment materialsto final write-up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors.

Addressing challenges in the management of long-term conditions in prisons

Addressing challenges in the management of long-term conditions in prisons

Social determinants of health and long-term conditions in people of Black African and Black Caribbean ethnicity living with HIV in London: Aqualitative study.

People living with human immunodeficiency virus (HIV) are disproportionately impacted by socioeconomic deprivation and are at increased risk of developing other long-term conditions (LTCs). These illnesses require transformative action to tackle the adverse effects on their health. Data on lived experiences of LTCs among people living with HIV of Black African and Black Caribbean ethnicities are sparse, and how people with LTCs are impacted by social determinants of health (SDoH). Through a phenomenological study design this qualitative study, conducted in 2022, comprised four focus group discussions (FGDs) with 20 people of Black ethnicities living with HIV were purposively invited from a community organisation (CO) in London, including four semistructured interviews with CO staff. Following transcription, qualitative data were analysed thematically and measures to validate the findings were implemented. The findings are presented in terms of the following four levels of SDoH: (1) individual determinants (such as the impact of SDoH on lifestyle modification and self-management); (2) interpersonal determinants (such as positive experiences of accessing healthcare for LTCs); (3) clinical determinants (such as care pathway barriers)and (4) systemic determinants (such as systemic barriers related to race/ethnicity). It is necessary to provide ongoing and interactive education to community members who live with HIV, focusing on risks and management of LTCs. Additionally, individuals would benefit from support to navigate increasingly complex and fragmented health services. Health Service staff require cultural competence when caring for patients of Black African and Black Caribbean ethnicities with complex health and psychosocial needs. The research team collaborated with an HIVCOin South London from the very start of the project to agree the study design and learn about the realities of their daily lived experiences. Community collaborators helped to develop the semistructured interview and FGDtopic guides, and were directly involved in the data gathering, analysis and validation.

P121 Understanding barriers to digital inclusion from Urdu speakers’ perspective: remote monitoring of rheumatoid arthritis

Abstract Background/Aims Chronic musculoskeletal conditions are more prevalent in South Asian (SA) communities, particularly for women and older adults, who face existing barriers in accessing healthcare services. Remote patient monitoring (RPM) has the potential to enhance management of long-term conditions like rheumatoid arthritis, offering insights into disease activity and supporting shared decision-making. However, SA communities in the UK and elsewhere, are commonly underrepresented in the development and evaluation of digital health technologies where language and other barriers may limit adoption and use. This research aimed to explore perspectives of Urdu speaking members of South Asian communities on barriers for engaging with RPM using an app designed for people with rheumatoid arthritis (RA). The focus on Urdu speakers provides an example to ensure RPM benefits South Asian communities, and particularly where language may be a barrier. Methods The study included nine participants, primarily females with one male participant, aged 55-75, who were Urdu speakers and diagnosed with or suspected of having RA. They were recruited from community organisations in Greater Manchester and introduced to the RPM app for monitoring symptoms. Semi-structured interviews were conducted in Urdu to investigate barriers to digital inclusion. The interviews were transcribed and analysed in Urdu (by Urdu speaking members of the team) with selective translation into English. Thematic analysis was used to identify themes and subthemes related to digital exclusion and strategies for addressing these issues. Results Participants’ responses were themed into five key areas concerning digital inclusion and potential solutions: 1. Existing use of digital devices and resources ; most expressed limited use of digital technology in day to day living, 2. Concerns about privacy ; some expressing caution and lack of confidence in security, 3. Views about symptom tracking; many were positive about tracking symptoms to share with doctors, though some said they would not want the constant reminder of their condition, 4. Barriers to engagement with the app; women, older individuals, and those with limited tech exposure, emphasizing the need for translated versions and family support, 5.Social Support to engagement with technology; Suggestions included workshops to improve digital literacy, translated materials (including audio) and reminders, as well as family support. Conclusion The study revealed challenges faced by women, older individuals, and those with limited tech exposure when using the app, emphasizing the need for translated versions and family support. The study also highlighted a need to consider intersectional dimensions of inequality for tailoring solutions. Overall, the study emphasizes the significance of tailored support and accessibility measures for the diverse communities like SA Urdu community when implementing digital health solutions. Disclosure Y. Masood: None. S. Ali: None. H. Chadwick: None. K. Staniland: None. S. van der Veer: None. W. Dixon: Consultancies; WGD has received consultancy fees from Google unrelated to this work. C. Sanders: None.

Reviews for multimorbidity risk in people with inflammatory conditions: a qualitative study.

People with inflammatory rheumatological conditions (IRCs) are at high risk of developing other conditions including cardiovascular disease (CVD) and mood disorders. To explore perspectives of people with IRCs and healthcare practitioners (HCPs) on the content and delivery of a review consultation aimed at identification and management of multiple long-term conditions (mLTCs). Semi-structured interviews and focus groups with people with IRCs and HCPs in primary and secondary care. People with IRCs participated in individual semi-structured interviews by telephone or online platform. HCPs (including primary and secondary care clinicians) participated in online focus groups. Data were transcribed verbatim and analysed using inductive thematic analysis. Fifteen people with IRCs were interviewed; three focus groups with HCPs were conducted. The following two main themes were identified: reflecting on the value of review consultations; and what would a new review look like? Overall, people with IRCs and HCPs reflected that access to reviews is inequitable, leading to duplication of reviews and fragmentation in care. People with IRCs, at times, had difficulty conceptualising reviews, especially when discussing their future risk of conditions. People suggested that preparation before the healthcare review could align patient and HCP agendas as part of a flexible and person-centred discussion. Any review introduced for people with IRCs must move beyond a 'tick-box' exercise. To gain maximum value from a review, preparation from both patient and HCP may be required alongside a person-centred approach while ensuring they are targeted at people most likely to benefit.

Feasibility and acceptability of multidisciplinary team training in health coaching: Case study in adolescent rheumatology

The central importance of the biopsychosocial model of chronic disease is increasingly recognised in the management of long-term conditions (LTC), which are often associated with chronic pain, fatigue and disability. Despite the physical and mental health impact, 'struggle' to maintain self-efficacy, gap in effective transition to adult pathways and long term consequences of poor disease control and lifestyle choices in young people with LTCs, innovation in this age range is rarely reported in generic journals. This paper explores the feasibility and acceptability of health coaching with young service users to increase engagement and self-management, achieved through multidisciplinary team (MDT) training in Adolescent Rheumatology.

1992 Long-term condition reviews in General Practice: The experiences of people with Dementia and their informal carers

Abstract “I would imagine it needed a review…” A Qualitative Study Exploring the Experiences of People with Dementia and their Informal Carers of Long-term Condition Reviews in Primary Care Introduction Multimorbidity is common for people with dementia (PWD) and is associated with increased healthcare utilisation and poorer outcomes. Part of the management of long-term conditions (LTCs) occurs through annual LTC reviews conducted in primary care. Little is known about the experiences or needs of people with dementia and informal carers in regard to LTC reviews. Aim To explore the experiences of PWD and their informal carers of the review and management of LTCs in primary care. Method Qualitative research study, protocol informed by discussion with people with lived experience as an informal carer. Institutional ethical approval (ref ETH2122-1035, University of East Anglia) was granted 25/3/2022. Semi-structured interviews were conducted with PWD and informal carers recruited through Join Dementia Research and local (to Norfolk, UK) charities. Thematic analysis was undertaken with reference to Braun and Clarke (2006). Results 16 participants were interviewed: two PWD, 10 informal carers and two informal care/PWD dyads. Our findings fall into four main themes: 1) What matters to people; medication optimisation and holistic care 2) What is a review; the diversity of experiences 3) The importance of communication and 4) Preference for shared decision making. Conclusion Consideration should be given to ensuring patients and carers are aware when a LTC review will take place and providing an opportunity to be involved, thus allowing shared decision making and patient centred care. Further research into the clinician experience and their views on patients’ needs and how to meet them is required to inform how LTC reviews for people with dementia can be optimised.

Using FLO text-messages to enhance health behaviours and self-management of long-term conditions in South-Asian patients.

Cultural and communication differences faced by South-Asian (SA) ethnic minority groups have led to challenges in the delivery of health care and complex management of long-term conditions (LTCs). We aim to explore the use of text-messaging in SA communities, through the Florence (FLO) health messaging system utilised within U.K. health sectors, to enhance positive health behaviours and self-management. A mixed-methods approach was used for this study involving two phases. Phase 1 includes the administration of the patient activation measure to assess SA patient level of skills, knowledge, and confidence to self-manage their LTC; whilst in Phase 2 semi-structured interviews were conducted, exploring the experiences of users and non-users of FLO text messaging to promote self-management behaviours. Forty participants (Florence users (n = 20) and non-users (n = 20)) completed the patient activation survey once after using FLO, and took part in interviews. Differences were noted to exist between the two groups (p < .01). Users appeared to have higher activation levels and better self-management behaviours (p < .01 (p = .00). Interviews elicit participants' perceptions of the text messaging system, along with key themes relative to behavioural constructs: socio-demographical factors; influencing behaviour changes, self-management, and uptake of text messages amongst SA ethnic minorities. Text messaging and mHealth are being extensively used amongst general populations to monitor and enhance health. The study of SA patient experiences and their use of text messages within the United Kingdom (UK) remains scarce. Therefore, results from the study identify health beliefs that influence patient engagement with digital health interventions and their self-management. Developing policies and culturally appropriate education guidelines for healthcare practitioners can allow for the provision of culturally sensitive interventions tailored in terms of normative, cultural, and religious beliefs; which in turn will address crucial aspects including SA patient information and educational needs supporting their self-management journey.

Facilitating self-care through community pharmacy in England

In England, almost all the population are within a short walk of a community pharmacy. This network of pharmacies provides a range of services, most of which are commissioned and remunerated through a nationally agreed contract with the National Health Service (NHS). Over time this contract has seen funding move from the traditional core service of dispensing medicines, toward patient-facing clinical services. All of these services have elements of self-care built in to the service specification, which pharmacists are mandated to deliver. These services significantly expand the role of the community pharmacist beyond facilitating self-care by supplying “over the counter” (OTC) medication. The increased public health role, where promotion of healthy living and prevention of disease is now seen as an essential activity by and for pharmacists. Changes to UK health policy, where the focus has been on delivering care closer to the patients' home, means community pharmacists have an increasing role in the effective management of acute and long-term conditions. The most recent contract afforded to pharmacy has now started to integrate pharmacy services with medical services, in both primary and secondary care, in attempt to provide greater continuity for the patient. It is very likely that self-care activities provided by community pharmacy will expand further, especially around the management of long-term conditions as the pharmacy workforce transitions in to having prescribing rights for medicines other than non-prescription medicines.

Pharmacy users' perceptions, awareness and future expectations of community pharmacy in England: a focus group study.

To explore pharmacy users' perceptions of current and future provision of community pharmacy services in England. Qualitative, reconvened focus groups were conducted with community pharmacy users. An initial focus group explored preliminary views. Participants were then given an evidence brief describing community pharmacy before a reconvened focus group two weeks later. Transcripts were analysed using inductive thematic analysis. Eleven individuals participated across two reconvened focus groups. Participants valued community pharmacies and staff, but lacked awareness of their services and roles: '… I don't think the general public is aware of all of this … it gives you a very different perspective'. Urgent care and long-term conditions management were identified as suitable for future development, facilitated by training, closer collaboration with general practices, shared access to health records, and premises with more space and confidentiality: 'I still think of it as a retail space more than as a health service'. Concerns were expressed about working conditions in community pharmacy and unplanned closures: 'doesn't sound like a great place to work'. Participants anticipated greater use of technology but did not want this to replace face-to-face contact with pharmacy staff: 'I am not saying it's inaccurate, it is so remote and impersonal'. Pharmacy users would value a greater role for community pharmacy in addressing the challenges currently faced by the health service in England, provided that their concerns on a range of issues are addressed.

Feasibility and outcomes of using DIALOG+ in primary care to improve quality of life and mental distress of patients with long-term physical conditions: an exploratory non-controlled study in Bosnia and Herzegovina, Colombia and Uganda

IntroductionThe management of long-term physical conditions is a challenge worldwide, absorbing a majority resources despite the importance of acute care. The management of these conditions is done largely in primary care and so interventions to improve primary care could have an enormous impact. However, very little data exist on how to do this. Mental distress is frequently comorbid with long term physical conditions, and can impact on health behaviour and adherence, leading to poorer outcomes. DIALOG+ is a low-cost, patient-centred and solution-focused intervention, which is used in routine patient-clinician meetings and has been shown to improve outcomes in mental health care. The question arises as to whether it could also be used in primary care to improve the quality of life and mental health of patients with long-term physical conditions. This is particularly important for low- and middle-income countries with limited health care resources.MethodsAn exploratory non-controlled multi-site trial was conducted in Bosnia and Herzegovina, Colombia, and Uganda. Feasibility was determined by recruitment, retention, and session completion. Patient outcomes (quality of life, anxiety and depression symptoms, objective social situation) were assessed at baseline and after three approximately monthly DIALOG+ sessions.ResultsA total of 117 patients were enrolled in the study, 25 in Bosnia and Herzegovina, 32 in Colombia, and 60 in Uganda. In each country, more than 75% of anticipated participants were recruited, with retention rates over 90% and completion of the intervention exceeding 92%. Patients had significantly higher quality of life and fewer anxiety and depression symptoms at post-intervention follow-up, with moderate to large effect sizes. There were no significant improvements in objective social situation.ConclusionThe findings from this exploratory trial suggest that DIALOG+ is feasible in primary care settings for patients with long-term physical conditions and may substantially improve patient outcomes. Future research may test implementation and effectiveness of DIALOG+ in randomized controlled trials in wider primary care settings in low- and middle-income countries.Trial registrationAll studies were registered prospectively within the ISRCTN Registry. ISRCTN17003451, 02/12/2020 (Bosnia and Herzegovina), ISRCTN14018729, 01/12/2020 (Colombia) and ISRCTN50335796, 02/12/2020 (Uganda).

Role of community pharmacy and pharmacists in self care in Sweden

BackgroundSelf care is an important concept, which is increasingly being applied by policy makers on a large scale. It is associated with improved health literacy and technological advances. Community pharmacy practitioners are easily accessible for self care counselling, purchase of non-prescription products and for referrals to other healthcare providers. ObjectiveTo describe self care policies and strategies in Swedish healthcare authorities, pharmaceutical organizations and community pharmacy. MethodsA search was conducted to retrieve self care policy documents and strategies in Swedish healthcare authorities, pharmaceutical organizations and community pharmacy on respective websites, as well as personal contacts with key persons in pharmaceutical organizations and community pharmacy practice. ResultsA new law on self care was adopted by the Swedish Parliament becoming effective in 2023. The law defines self care as a healthcare measure that has been assessed by a treating licenced healthcare practitioner to be possible to be performed by the patient him/herself. The law includes a wide range of measures. According to a Government Commission that followed Sweden's the National Pharmaceutical Strategy's Action Plan in 2018, the Medical Products Agency (MPA) was assigned to establish requirements of qualifications in self care counselling. In its report in late 2022, the MPA stated that self care counselling by community pharmacy practitioners plays an important role in society. The new requirements are expected to become effective in mid-2023. None of the four community pharmacy chains operating 97% of Sweden's community pharmacies have developed any specific self care policies, although self care counselling and sales of non-prescription products, as well as provision of some primary healthcare services, constitute important components of their operations. Furthermore, all Swedish pharmacies offer several digital self care solutions, supporting people to manage their own health. Neither the Swedish Pharmacy Association, representing most pharmacies, nor the Swedish Pharmacists Association, the trade union, have developed any self care policies. However, the Swedish Association of the Pharmaceutical Industry is promulgating Swedish self care reform using a systematic review of self care and which medicines should be over-the-counter. ConclusionsSelf care is not currently established as a core pillar of a Swedish national health strategy. There are further opportunities to enable pharmacists to fulfil their potential in supporting individual wellbeing and promoting self care interventions. A new system needs to be created which fully integrates the promotion of everyday wellbeing, self care for self-treatable conditions and the management of long-term conditions.

Embedding a multiple health condition approach across NHS Greater Manchester

Here, we present two real-world examples of how a prioritised, person-centred, multiple health condition approach - also termed a multimorbidity approach - has been applied to long-term condition management in general practice in Greater Manchester. The first example is the implementation of targeted multiple health condition reviews via a population health management approach across general practice in the City of Manchester. The second example is the development of a person-centred risk stratification tool, focused on unmet cardiovascular need, called 'CVNeed'. This tool provides a unique approach to highlighting the highest unmet need and, thus, the largest return on investment to the system from proactive efforts. These examples demonstrate how a person-centred, multiple health condition approach to long-term condition management, enabled by data intelligence to drive prioritisation of clinical need, can help to address longstanding health inequalities and unwarranted variation in health outcomes. This work also highlights the potential for integrated care systems (ICS) to work collaboratively to tackle health inequalities at a system, locality and neighbourhood level, thus making significant strides toward achieving the vision set out in the Greater Manchester Integrated Care Partnership (ICP) Strategy.

Professional stakeholders’ expectations for the future of community pharmacy practice in England: a qualitative study

ObjectivesTo explore the views of professional stakeholders on the future of community pharmacy services in England. Specific objectives related to expectations of how community pharmacy services will be provided by...