Experiences of hospital care for people with multiple long-term conditions: a scoping review of qualitative research.

BACKGROUND: Multiple long-term conditions-the co-existence of two or more chronic health conditions in an individual-present an increasing challenge to populations and healthcare systems worldwide. This challenge is keenly felt in hospital settings where care is oriented around specialist provision for single conditions. The aim of this scoping review was to identify and summarise published qualitative research on the experiences of hospital care for people living with multiple long-term conditions, their informal caregivers and healthcare professionals. METHODS: We undertook a scoping review, following established guidelines, of primary qualitative research on experiences of hospital care for people living with multiple long-term conditions published in peer-reviewed journals between Jan 2010 and June 2022. We conducted systematic electronic searches of MEDLINE, CINAHL, PsycInfo, Proquest Social Science Premium, Web of Science, Scopus and Embase, supplemented by citation tracking. Studies were selected for inclusion by two reviewers using an independent screening process. Data extraction included study populations, study design, findings and author conclusions. We took a narrative approach to reporting the findings. RESULTS: Of 8002 titles and abstracts screened, 54 papers reporting findings from 41 studies conducted in 14 countries were identified as eligible for inclusion. The perspectives of people living with multiple long-term conditions (21 studies), informal caregivers (n = 13) and healthcare professionals (n = 27) were represented, with 15 studies reporting experiences of more than one group. Findings included poor service integration and lack of person-centred care, limited confidence of healthcare professionals to treat conditions outside of their specialty, and time pressures leading to hurried care transitions. Few studies explored inequities in experiences of hospital care. CONCLUSIONS: Qualitative research evidence on the experiences of hospital care for multiple long-term conditions illuminates a tension between the desire to provide and receive person-centred care and time pressures inherent within a target-driven system focussed on increasing specialisation, reduced inpatient provision and accelerated journeys through the care system. A move towards more integrated models of care may enable the needs of people living with multiple long-term conditions to be better met. Future research should address how social circumstances shape experiences of care.

The interrelationship between multiple long-term conditions (MLTC) and delirium: a scoping review.

INTRODUCTION: Delirium and multiple long-term conditions (MLTC) share numerous risk factors and have been shown individually to be associated with adverse outcomes following hospitalisation. However, the extent to which these common ageing syndromes have been studied together is unknown. This scoping review aims to summarise our knowledge to date on the interrelationship between MLTC and delirium. METHODS: Searches including terms for delirium and MLTC in adult human participants were performed in PubMed, EMBASE, Medline, Psycinfo and CINAHL. Descriptive analysis was used to summarise findings, structured according to Synthesis Without Meta-analysis reporting guidelines. RESULTS: After removing duplicates, 5256 abstracts were screened for eligibility, with 313 full-texts sought along with 17 additional full-texts from references in review articles. In total, 140 met inclusion criteria and were included in the final review. Much of the literature explored MLTC as a risk factor for delirium (n = 125). Fewer studies explored the impact of MLTC on delirium presentation (n = 5), duration (n = 3) or outcomes (n = 6) and no studies explored how MLTC impacts the treatment of delirium or whether having delirium increases risk of developing MLTC. The most frequently used measures of MLTC and delirium were the Charlson Comorbidity Index (n = 98/140) and Confusion Assessment Method (n = 81/140), respectively. CONCLUSION: Existing literature largely evaluates MLTC as a risk factor for delirium. Major knowledge gaps identified include the impact of MLTC on delirium treatment and the effect of delirium on MLTC trajectories. Current research in this field is limited by significant heterogeneity in defining both MLTC and delirium.

Prevalence of Unmet Rehabilitation Needs Among Canadians Living With Long-term Conditions or Disabilities During the First Wave of the COVID-19 Pandemic.

OBJECTIVE: We aimed to describe the prevalence of unmet rehabilitation needs among a sample of Canadians living with long-term conditions or disabilities during the first wave of the COVID-19 pandemic. DESIGN: Cross-sectional survey. SETTING: Individuals residing in Canada during the first wave of the COVID-19 pandemic. PARTICIPANTS: Eligible participants were Canadians living with long-term conditions or disabilities, 15 years or older living in 1 of the 10 provinces or 3 territories (n=13,487). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: We defined unmet rehabilitation needs as those who reported needing rehabilitation (ie, physiotherapy/massage therapy/chiropractic, speech, or occupational therapy, counseling services, support groups) but did not receive it because of the COVID-19 pandemic. We calculated the national, age, gender, and province/territory-specific prevalence and 95% confidence interval of unmet rehabilitation needs. RESULTS: During the first wave of the pandemic, the prevalence of unmet rehabilitation needs among Canadians with long-term conditions or disabilities was 49.3% (95% confidence interval [CI]; 48.3, 50.3]). The age-specific prevalence was higher among individuals 15-49 years old (55.6%; 95% CI [54.2, 57.1]) than those 50 years and older (46.0%; 95% CI [44.5, 47.4]). Females (53.7%; 95% CI [52.6, 54.9]) had higher unmet needs than males (44.1%; 95% CI [42.3, 45.9]). Unmet rehabilitation needs varied across provinces and territories. CONCLUSIONS: In this sample, almost 50% of Canadians living with long-term conditions or disabilities had unmet rehabilitation needs during the first wave of the COVID-19 pandemic. This suggests that a significant gap between the needs for and delivery of rehabilitation care existed during the early phase of the pandemic.

Accessing care for Long Covid from the perspectives of patients and healthcare practitioners: A qualitative study.

BACKGROUND: Long Covid is an emerging long-term condition, with those affected raising concerns about lack of healthcare support. OBJECTIVE: We conducted a qualitative study to identify facilitators and barriers to healthcare access for people with Long Covid, aiming to enhance our understanding of the specific nature of these barriers and how patient experiences may vary. SETTING AND PARTICIPANTS: In the context of the Symptoms, Trajectory, Inequalities and Management: Understanding Long-COVID to Address and Transform Existing Integrated Care Pathways (STIMULATE-ICP) Delphi study, a nationally distributed online survey was conducted. Eight patients and eight healthcare practitioners (HCP) were interviewed via telephone or video call. Framework analysis, sensitised by the candidacy theory, was used to identify barriers and facilitators over four levels of access to care. RESULTS: Three themes were identified: (i) patients' efforts to navigate emerging pathways for Long Covid, (ii) the patient-HCP interaction and (iii) service resources and structural constraints. Barriers to specialist care included long waiting times, communication gaps across services and a lack of continuity in care. Facilitators included collaborative, patient-centred approaches, patients' active role in their healthcare and blended approaches for appointments. The perspectives of both patients and HCPs largely aligned. DISCUSSION: The candidacy framework was valuable in understanding the experiences of people with Long Covid seeking access to healthcare. Individuals perceived themselves as eligible for care, but they often encountered obstacles in obtaining the expected level of care or, in some cases, did not receive it at all. Our findings are discussed in the context of the candidacy model through multiple processes of identification, negotiation, permeability and appearances at health services. These themes seem to be especially important for the emerging new pathway model and are relevant to both primary and secondary care. CONCLUSIONS: This study highlights that despite these interviews being conducted two years after the start of the COVID-19 pandemic, people with Long Covid still struggle to access healthcare, emphasising the ongoing need to provide equitable timely healthcare access for people with Long Covid. PATIENT OR PUBLIC CONTRIBUTION: People with Long Covid advised on all stages of this research.

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

BACKGROUND: 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). METHODS: 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. RESULTS: 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). CONCLUSIONS: 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. PATIENT OR PUBLIC CONTRIBUTION: The research team collaborated with an HIV CO in 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 FGD topic guides, and were directly involved in the data gathering, analysis and validation.

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

BACKGROUND: 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 carers and 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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 influence caregiver burden. PATIENT OR PUBLIC CONTRIBUTION: Our PPI panel DIAMONDS Voice provided guidance on this study from conception, design and development of interview guides and recruitment materials to 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.

Gaining consensus on emotional wellbeing themes and preferences for digital intervention type and content to support the mental health of young people with long-term health conditions: A Delphi study.

BACKGROUND: Young people (YP) with long-term conditions (LTCs) are at greater risk of psychological distress than those without LTCs. Despite this, there is a scarcity of quality digital interventions designed to help improve mental wellbeing in this population. The aim of this study was to determine what YP, parents and health professionals preferred for future interventions. METHODS: Twenty-six YP with asthma, diabetes and/or epilepsy (the three most common LTCs in YP), 23 parents of YP with LTCs and 10 health professionals mainly in paediatric specialisms (total n = 59) took part in an online Delphi study to gain consensus (set at 75% agreement) on four questions across three rounds. Participants ordered psychological themes that may be experienced by YP with LTCs by importance and ranked digital intervention types and delivery modes by importance or usefulness. The most common results were reported if no consensus was reached by round 3. RESULTS: Participants preferred a mobile phone app (73% agreement) and a mixture of one-on-one and group support for an intervention (75% agreement). The two highest ranked psychological themes were anxiety (44%) and wanting to appear 'normal' (38%), and the top intervention type was 'general counselling' (54% agreement). CONCLUSION: There was a clear desire for an app to help with the psychological aspects of living with LTCs and for a combination of one-to-one and group intervention elements. Anxiety and wanting to appear 'normal' might be two closely linked psychological challenges that could be addressed by a single intervention. IMPLICATIONS: The results will be important to consider for a future intervention, although further consultation will be needed for app development. PATIENT OR PUBLIC CONTRIBUTION: Two YP with a LTC provided feedback on the study protocol including the aims and procedures of the project. Another six YP with LTCs were consulted on an early draft of the study questionnaire (the four questions), which was subsequently revised. Once the project began, a patient and public involvement group consisting of two YP with LTCs and one parent of a YP with an LTC gave feedback on the research process, lay report of the results and dissemination plan.

A qualitative exploration of the barriers and facilitators to self-managing multiple long-term conditions amongst people experiencing socioeconomic deprivation.

BACKGROUND: Globally, it is estimated that one in three adults live with two or more long-term conditions (multiple long-term conditions, MLTCs), that require self-management. People who experience socioeconomic deprivation face significant health inequalities due to a range of interrelated characteristics that lead to a lack of resources and opportunities. Previous research with underserved populations indicate low levels of trust towards primary care providers and potential barriers for developing patient-healthcare professional relationships. The purpose of this paper is to explore the barriers and facilitators to self-managing MLTCs, amongst people who experience socioeconomic deprivation. METHODS: Semistructured one-to-one interviews with adults (n = 28) living in London and Sheffield, United Kingdom with MLTCs who are experiencing socioeconomic deprivation. Participants were recruited through general practices, community channels and social media. Data were analysed in NVivo using reflexive thematic analysis methods. FINDINGS: Four analytical themes were developed: (1) challenges in accessing healthcare services, financial assistance, and cultural awareness; (2) empowerment and disempowerment through technology, including digital exclusion, and use of technology; (3) impact and causes of exclusion on self-management, including social isolation, area-based and economic exclusion, and health-related stigma and (4) adapting self-management strategies, including cost-effective, and culturally/lifestyle appropriate strategies. CONCLUSIONS: Future health interventions and services need to be developed with consideration of the combined complexities of managing MLTCs while experiencing socioeconomic deprivation. Increased awareness in practitioners and commissioners of the complexities surrounding the lives of people experiencing socioeconomic deprivation, and the need for targeted strategies to promote self-management of MLTCs are of great importa. PATIENT OR PUBLIC CONTRIBUTION: A patient advisory group contributed to all stages of the study, including providing important feedback on study documents (topic guides and recruitment materials), as well as providing critical insights surrounding the interpretation of interview data.

Lost in the System: Responsibilisation and Burden for Women With Multiple Long-Term Health Conditions During Pregnancy.

INTRODUCTION: Over a fifth of pregnant women are living with multiple long-term health conditions, which is associated with increased risks of adverse outcomes for mothers and infants. While there are many examples of research exploring individuals' experiences and care pathways for pregnancy with a single health condition, evidence relating to multiple health conditions is limited. This study aimed to explore experiences and care of women with multiple long-term health conditions around the time of pregnancy. METHODS: Semistructured interviews were conducted between March 2022 and May 2023 with women with multiple long-term health conditions who were at least 28 weeks pregnant or had had a baby in the last 2 years, and healthcare professionals with experience of caring for these women. Participants were recruited from across the United Kingdom. Data were analysed using thematic analysis. RESULTS: Fifty-seven women and 51 healthcare professionals participated. Five themes were identified. Women with long-term health conditions and professionals recognised that it takes a team to avoid inconsistent care and communication, for example, medication management. Often, women were required to take a care navigation role to link up their healthcare providers. Women described mixed experiences regarding care for their multiple identities and the whole person. Postnatally, women and professionals recognised a downgrade in care, particularly for women's long-term health conditions. Some professionals detailed the importance of engaging with women's knowledge, and recognising their own professional boundaries of expertise. Many participants described difficulties in providing informational continuity and subsequent impacts on care. Specifically, the setup of care systems made it difficult for everyone to access necessary information, especially when care involved multiple sites. CONCLUSION: Pregnant women with long-term health conditions can experience a substantial burden of responsibility to maintain communication with their care team, often feeling vulnerable, patronised, and let down by a lack of acknowledgement of their expertise. These results will be used to inform the content of coproduction workshops aimed at developing a list of care recommendations for affected women. It will also inform future interventional studies aimed at improving outcomes for these women and their babies. PATIENT OR PUBLIC CONTRIBUTION: Our Patient and Public Involvement group were involved in the design of the study and the analysis and interpretation of the data, and a public study investigator was part of the author group.

Tackling physical inactivity and inequalities: implementing a whole systems approach to transform community provision for disabled people and people with long-term health conditions.

BACKGROUND: Physical inactivity is a global public health priority. There are known health and well-being consequences of being inactive, and the benefits of being physically active are well established. However, there are persistent inequalities when it comes to how physically active people are, with disabled people, people living with long-term health conditions, and people residing in areas of socio-economic deprivation being particularly affected. Methods such as whole system approaches (WSAs), which are dynamic, multifaceted, and engage all relevant stakeholders, have gained momentum as an approach to address such complex public health problems. However, evidence relating to the implementation of WSAs to address physical inactivity is lacking. The aim of the Prevention and Enablement Model (PEM) was to take a whole system approach in Essex to encourage and support disabled people and/or individuals living with long-term health conditions to be more active, happier, and to live more independently. METHODS: The aim of this study was to explore the enablers, challenges, and reflections associated with the process of designing and implementing the PEM. Semi-structured interviews (n = 12) were used to collect data from people involved in the PEM's design, implementation and/or delivery. Data was analysed using Braun and Clarke's reflexive thematic analysis. RESULTS: Four themes were identified: (1) Working collaboratively: Specific enablers of time and space were identified as important in the planning and implementation of a WSA (2) Leadership and planning: Distributed and flexible leadership was identified as central to successful implementation (3) Re-orientating practice: Highlighted the transformative potential of a whole system approach and how it contrasts with conventional work practices, and (4) Reflection and learning: Informing ongoing refinements and further implementation of successful system change. CONCLUSIONS: These findings highlight the challenge and complexity of implementing a WSA that involves diverse stakeholders from across adult social care, the NHS, and the third sector. Several important enablers are identified, such as leadership and planning, and the challenges and discomfort that can arise whilst changing systems. Ongoing efforts are required to ensure that different elements of the system collaborate effectively to address inequalities in physical activity participation, through the implementation of a WSA.

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.

Polypharmacy during pregnancy and associated risk factors: a retrospective analysis of 577 medication exposures among 1.5 million pregnancies in the UK, 2000-2019.

BACKGROUND: The number of medications prescribed during pregnancy has increased over the past few decades. Few studies have described the prevalence of multiple medication use among pregnant women. This study aims to describe the overall prevalence over the last two decades among all pregnant women and those with multimorbidity and to identify risk factors for polypharmacy in pregnancy. METHODS: A retrospective cohort study was conducted between 2000 and 2019 using the Clinical Practice Research Datalink (CPRD) pregnancy register. Prescription records for 577 medication categories were obtained. Prevalence estimates for polypharmacy (ranging from 2+ to 11+ medications) were presented along with the medications commonly prescribed individually and in pairs during the first trimester and the entire pregnancy period. Logistic regression models were performed to identify risk factors for polypharmacy. RESULTS: During the first trimester (812,354 pregnancies), the prevalence of polypharmacy ranged from 24.6% (2+ medications) to 0.1% (11+ medications). During the entire pregnancy period (774,247 pregnancies), the prevalence ranged from 58.7 to 1.4%. Broad-spectrum penicillin (6.6%), compound analgesics (4.5%) and treatment of candidiasis (4.3%) were commonly prescribed. Pairs of medication prescribed to manage different long-term conditions commonly included selective beta 2 agonists or selective serotonin re-uptake inhibitors (SSRIs). Risk factors for being prescribed 2+ medications during the first trimester of pregnancy include being overweight or obese [aOR: 1.16 (1.14-1.18) and 1.55 (1.53-1.57)], belonging to an ethnic minority group [aOR: 2.40 (2.33-2.47), 1.71 (1.65-1.76), 1.41 (1.35-1.47) and 1.39 (1.30-1.49) among women from South Asian, Black, other and mixed ethnicities compared to white women] and smoking or previously smoking [aOR: 1.19 (1.18-1.20) and 1.05 (1.03-1.06)]. Higher and lower age, higher gravidity, increasing number of comorbidities and increasing level of deprivation were also associated with increased odds of polypharmacy. CONCLUSIONS: The prevalence of polypharmacy during pregnancy has increased over the past two decades and is particularly high in younger and older women; women with high BMI, smokers and ex-smokers; and women with multimorbidity, higher gravidity and higher levels of deprivation. Well-conducted pharmaco-epidemiological research is needed to understand the effects of multiple medication use on the developing foetus.

Ethnic inequalities in the impact of COVID-19 on primary care consultations: a time series analysis of 460,084 individuals with multimorbidity in South London.

BACKGROUND: The COVID-19 pandemic caused rapid changes in primary care delivery in the UK, with concerns that certain groups of the population may have faced increased barriers to access. This study assesses the impact of the response to the COVID-19 pandemic on primary care consultations for individuals with multimorbidity and identifies ethnic inequalities. METHODS: A longitudinal study based on monthly data from primary care health records of 460,084 patients aged ≥18 years from 41 GP practices in South London, from February 2018 to March 2021. Descriptive analysis and interrupted time series (ITS) models were used to analyse the effect of the pandemic on primary care consultations for people with multimorbidity and to identify if the effect varied by ethnic groups and consultation type. RESULTS: Individuals with multimorbidity experienced a smaller initial fall in trend at the start of the pandemic. Their primary care consultation rates remained stable (879 (95% CI 869-890) per 1000 patients in February to 882 (870-894) March 2020), compared with a 7% decline among people without multimorbidity (223 consultations (95% CI 221-226) to 208 (205-210)). The gap in consultations between the two groups reduced after July 2020. The effect among individuals with multimorbidity varied by ethnic group. Ethnic minority groups experienced a slightly larger fall at the start of the pandemic. Individuals of Black, Asian, and Other ethnic backgrounds also switched from face-to-face to telephone at a higher rate than other ethnic groups. The largest fall in face-to-face consultations was observed among people from Asian backgrounds (their consultation rates declined from 676 (659-693) in February to 348 (338-359) in April 2020), which may have disproportionately affected their quality of care. CONCLUSIONS: The COVID-19 pandemic significantly affected primary care utilisation in patients with multimorbidity. While there is evidence of a successful needs-based prioritisation of multimorbidity patients within primary care at the start of the pandemic, inequalities among ethnic minority groups were found. Strengthening disease management for these groups may be necessary to control widening inequalities in future health outcomes.

The development of a core outcome set for studies of pregnant women with multimorbidity.

BACKGROUND: Heterogeneity in reported outcomes can limit the synthesis of research evidence. A core outcome set informs what outcomes are important and should be measured as a minimum in all future studies. We report the development of a core outcome set applicable to observational and interventional studies of pregnant women with multimorbidity. METHODS: We developed the core outcome set in four stages: (i) a systematic literature search, (ii) three focus groups with UK stakeholders, (iii) two rounds of Delphi surveys with international stakeholders and (iv) two international virtual consensus meetings. Stakeholders included women with multimorbidity and experience of pregnancy in the last 5 years, or are planning a pregnancy, their partners, health or social care professionals and researchers. Study adverts were shared through stakeholder charities and organisations. RESULTS: Twenty-six studies were included in the systematic literature search (2017 to 2021) reporting 185 outcomes. Thematic analysis of the focus groups added a further 28 outcomes. Two hundred and nine stakeholders completed the first Delphi survey. One hundred and sixteen stakeholders completed the second Delphi survey where 45 outcomes reached Consensus In (≥70% of all participants rating an outcome as Critically Important). Thirteen stakeholders reviewed 15 Borderline outcomes in the first consensus meeting and included seven additional outcomes. Seventeen stakeholders reviewed these 52 outcomes in a second consensus meeting, the threshold was ≥80% of all participants voting for inclusion. The final core outcome set included 11 outcomes. The five maternal outcomes were as follows: maternal death, severe maternal morbidity, change in existing long-term conditions (physical and mental), quality and experience of care and development of new mental health conditions. The six child outcomes were as follows: survival of baby, gestational age at birth, neurodevelopmental conditions/impairment, quality of life, birth weight and separation of baby from mother for health care needs. CONCLUSIONS: Multimorbidity in pregnancy is a new and complex clinical research area. Following a rigorous process, this complexity was meaningfully reduced to a core outcome set that balances the views of a diverse stakeholder group.

Simple approaches to characterising multiple long-term conditions (multimorbidity) and rates of emergency hospital admission: Findings from 495,465 UK Biobank participants.

BACKGROUND: Numerous approaches are used to characterise multiple long-term conditions (MLTC), including counts and indices. Few studies have compared approaches within the same dataset. We aimed to characterise MLTC using simple approaches, and compare their prevalence estimates of MLTC and associations with emergency hospital admission in the UK Biobank. METHODS: We used baseline data from 495,465 participants (age 38-73 years) to characterise MLTC using four approaches: Charlson index (CI), Byles index (BI), count of 43 conditions (CC) and count of body systems affected (BC). We defined MLTC as more than two conditions using CI, BI and CC, and more than two body systems using BC. We categorised scores (incorporating weightings for the indices) from each approach as 0, 1, 2 and 3+. We used linked hospital episode statistics and performed survival analyses to test associations with an endpoint of emergency hospital admission or death over 5 years. RESULTS: The prevalence of MLTC was 44% (BC), 33% (CC), 6% (BI) and 2% (CI). Higher scores using all approaches were associated with greater outcome rates independent of sex and age group. For example, using CC, compared with score 0, score 2 had 1.95 (95% CI: 1.91, 1.99) and a score of 3+ had 3.12 (95% CI: 3.06, 3.18) times greater outcome rates. The discriminant value of all approaches was modest (C-statistics 0.60-0.63). CONCLUSIONS: The counts classified a greater proportion as having MLTC than the indices, highlighting that prevalence estimates of MLTC vary depending on the approach. All approaches had strong statistical associations with emergency hospital admission but a modest ability to identify individuals at risk.

First validation study of the living with long term conditions scale (LwLTCs) among English-speaking population living with Parkinson's disease.

INTRODUCTION: Parkinson's disease is the second most prevalent neurodegenerative disease, affecting 10 million people worldwide. Health and social care professionals need to have personalised tools to evaluate the process of living with Parkinson's disease and consequently, plan individualised and targeted interventions. Recently, the English version of the Living with Long term conditions (LwLTCs) scale has been developed filling an important gap related to person-centred tools to evaluate the process of living with long term conditions among English-speaking population. However, no validation studies for testing its psychometric properties have been conducted. AIM: To analyse the psychometric properties of the LwLTCs scale in a wide English-speaking population living with Parkinson's disease. METHODS: Validation study, with an observational and cross-sectional design. The sample was composed of individuals living with Parkinson's disease from non-NHS services in the community. Psychometric properties including feasibility and acceptability, internal consistency, reproducibility, and construct, internal and known-groups validity were tested. RESULTS: A total sample of 241 people living with Parkinson's disease were included. 6 individuals did not complete 1 or 2 items on the scale. Ordinal alpha was 0.89 for the total scale. The intraclass correlation coefficient for the total scale was 0.88. The LwLTCs scale is strongly correlated with scales measuring satisfaction with life (rs=0.67), quality of life (rs=0.54), and moderately correlated with social support (rs=0.45). Statistically significant difference just for therapy and co-morbidity, yet no for gender, employment situation, or lifestyle changes. CONCLUSIONS: The LwLTCs scale is a valid scale to evaluate how the person is living with Parkinson's disease. Future validation studies to prove the repeatability of the total scale and particularly, domains 3-Self-management, and 4-Integration and internal consistency will be needed. Developing further studies on the English version of the LwLTC in people with other long term conditions is also proposed.

Key outcomes for reporting in studies of pregnant women with multiple long-term conditions: a qualitative study.

BACKGROUND: Maternal multiple long-term conditions are associated with adverse outcomes for mother and child. We conducted a qualitative study to inform a core outcome set for studies of pregnant women with multiple long-term conditions. METHODS: Women with two or more pre-existing long-term physical or mental health conditions, who had been pregnant in the last five years or planning a pregnancy, their partners and health care professionals were eligible. Recruitment was through social media, patients and health care professionals' organisations and personal contacts. Participants who contacted the study team were purposively sampled for maximum variation. Three virtual focus groups were conducted from December 2021 to March 2022 in the United Kingdom: (i) health care professionals (n = 8), (ii) women with multiple long-term conditions (n = 6), and (iii) women with multiple long-term conditions (n = 6) and partners (n = 2). There was representation from women with 20 different physical health conditions and four mental health conditions; health care professionals from obstetrics, obstetric/maternal medicine, midwifery, neonatology, perinatal psychiatry, and general practice. Participants were asked what outcomes should be reported in all studies of pregnant women with multiple long-term conditions. Inductive thematic analysis was conducted. Outcomes identified in the focus groups were mapped to those identified in a systematic literature search in the core outcome set development. RESULTS: The focus groups identified 63 outcomes, including maternal (n = 43), children's (n = 16) and health care utilisation (n = 4) outcomes. Twenty-eight outcomes were new when mapped to the systematic literature search. Outcomes considered important were generally similar across stakeholder groups. Women emphasised outcomes related to care processes, such as information sharing when transitioning between health care teams and stages of pregnancy (continuity of care). Both women and partners wanted to be involved in care decisions and to feel informed of the risks to the pregnancy and baby. Health care professionals additionally prioritised non-clinical outcomes, including quality of life and financial implications for the women; and longer-term outcomes, such as children's developmental outcomes. CONCLUSIONS: The findings will inform the design of a core outcome set. Participants' experiences provided useful insights of how maternity care for pregnant women with multiple long-term conditions can be improved.

A qualitative exploration of the psychosocial needs of people living with long-term conditions and their perspectives on online peer support.

INTRODUCTION: Approximately 20% of people with a long-term condition (LTC) experience depressive symptoms (subthreshold depression [SUBD]). People with SUBD experience depressive symptoms that do not meet the diagnostic criteria for major depressive disorder. However, there is currently no targeted psychological support for people with LTCs also experiencing SUBD. Online peer support is accessible, inexpensive and scalable, and might offer a way of bridging the gap in psychosocial care for LTC patients. This article explores the psychosocial needs of people living with LTCs and investigates their perspectives on online peer support interventions to inform their future design. METHODS: Through a co-produced participatory approach, online focus groups were completed with people with lived experience of LTCs. Focus groups were audio recorded and transcribed verbatim. Reflexive thematic analysis (TA) was conducted adopting a critical-realist approach and an inductive analysis methodology that sought to follow participants' priorities and concerns. RESULTS: Ten people with a range of LTCs participated across three online focus groups, lasting an average of 95 (±10.1) min. The mean age was 57 (±11.4) years and 60% of participants identified as female. The three key emerging themes were: (1) relationship between self and outside world; (2) past experiences of peer support; and (3) philosophy and vision of peer support. Adults living with LTCs shared their past experiences of peer support and explored their perspectives on how future online peer support platforms may support their psychosocial needs. CONCLUSION: Despite the negative impact(s) of having a long-term physical health condition on mental health, physical and mental healthcare are often treated as separate entities. The need for an integrated approach for people with LTCs was clear. Implementation of online peer support to bridge this gap was supported, but there was a clear consensus that these interventions need to be co-produced and carefully designed to ensure they feel safe and not commercialised or prescriptive. Shared explorations of the potential benefits and concerns of these online spaces can shape the philosophy and vision of future platforms. PATIENT OR PUBLIC CONTRIBUTION: This work is set within a wider project which is developing an online peer support platform for those living with LTCs. A participatory, co-produced approach is integral to this work. The initial vision was steered by the experiences of our Patient and Public Involvement (PPI) groups, who emphasised the therapeutic value of peer-to-peer interaction. The focus groups confirmed the importance and potential benefit of this project. This paper represents the perspectives of PPI members who collaborate on research and public engagement at the mental-physical interface. A separate, independent Research Advisory Group (RAG), formed of members also living with LTCs, co-produced study documents, topic guides, and informed key decision-making processes. Finally, our co-investigator with lived experience (E. A.F.) undertook the analysis and write-up alongside colleagues, further strengthening the interpretation and resonance of our work. She shares first joint authorship, and as a core member of the research team, ensures that the conduct of the study is firmly grounded in the experience of people living with LTCs.

Understanding support systems for Parkinson's disease management in community settings: A cross-national qualitative study.

BACKGROUND: Health and social care systems face difficulties in managing multimorbidity, disease burden and complex needs in long-term conditions such as Parkinson's disease. OBJECTIVE: This study aimed to develop a European understanding of how health and social care professionals can collaborate with stakeholders from different organizations and sectors to enhance the management of Parkinson's disease in a community setting by identifying the existing gaps in this process and how people with Parkinson's disease and their family carers could benefit from these partnerships. METHODS: A mixed-methods sequential study was conducted in Denmark, Norway, Spain and the United Kingdom. The findings from the qualitative phase are presented. Individual semistructured interviews were analysed using Braun's and Clarke's thematic analysis. A meta-ethnography approach was used to analyse and synthesize cross-national findings. RESULTS: A total of 41 healthcare professionals and 39 stakeholders from different disciplines and sectors were interviewed in the four countries. The participants acknowledged a lack of awareness of available resources and poor communication between the different support systems in the management of Parkinson's disease. To promote multiagency collaborations, the participants highlighted the need to organize services along the Parkinson's disease journey, patient involvement and strategic involvement of carers in organizing resources and Parkinson's disease care pathways. According to the participants, the benefits from multiagency partnerships could lead to an enhanced continuity of care and specialized knowledge, mobilization of resources in the community, personalized support and improved access to services. CONCLUSIONS: Policymakers are called upon to create formal structures that facilitate multisectoral collaborations to promote an integrated system of care for the management of Parkinson's disease in the community. To address this challenge, we propose five strategies showing how organizations can work together to optimize the use of resources and enhance the management of Parkinson's disease throughout the illness trajectory. PATIENT OR PUBLIC CONTRIBUTION: Patient and Public Involvement groups made up of stakeholders, healthcare professionals, patients with Parkinson's disease and family carers participated in the design of the study, the development of the interview guides and the validation of the findings.

Ethnic inequalities in multiple long-term health conditions in the United Kingdom: a systematic review and narrative synthesis.

Indicative evidence suggests that minoritised ethnic groups have higher risk of developing multiple long-term conditions (MLTCs), and do so earlier than the majority white population. While there is evidence on ethnic inequalities in single health conditions and comorbidities, no review has attempted to look across these from a MLTCs perspective. As such, we currently have an incomplete understanding of the extent of ethnic inequalities in the prevalence of MLTCs. Further, concerns have been raised about variations in the way ethnicity is operationalised and how this impedes our understanding of health inequalities. In this systematic review we aimed to 1) describe the literature that provides evidence of ethnicity and prevalence of MLTCs amongst people living in the UK, 2) summarise the prevalence estimates of MLTCs across ethnic groups and 3) to assess the ways in which ethnicity is conceptualised and operationalised. We focus on the state of the evidence prior to, and during the very early stages of the pandemic. We registered the protocol on PROSPERO (CRD42020218061). Between October and December 2020, we searched ASSIA, Cochrane Library, EMBASE, MEDLINE, PsycINFO, PubMed, ScienceDirect, Scopus, Web of Science, OpenGrey, and reference lists of key studies/reviews. The main outcome was prevalence estimates for MLTCs for at least one minoritised ethnic group, compared to the majority white population. We included studies conducted in the UK reporting on ethnicity and prevalence of MLTCs. To summarise the prevalence estimates of MLTCs across ethnic groups we included only studies of MLTCs that provided estimates adjusted at least for age. Two reviewers screened and extracted data from a random sample of studies (10%). Data were synthesised using narrative synthesis. Of the 7949 studies identified, 84 met criteria for inclusion. Of these, seven contributed to the evidence of ethnic inequalities in MLTCs. Five of the seven studies point to higher prevalence of MLTCs in at least one minoritised ethnic group compared to their white counterparts. Because the number/types of health conditions varied between studies and some ethnic populations were aggregated or omitted, the findings may not accurately reflect the true level of ethnic inequality. Future research should consider key explanatory factors, including those at the macrolevel (e.g. racism, discrimination), as they may play a role in the development and severity of MLTCs in different ethnic groups. Research is also needed to ascertain the extent to which the COVID19 pandemic has exacerbated these inequalities.