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.

Young adults' experiences of biographical retrogression whilst living with long COVID.

During the early years (2020-2021) of the COVID-19 pandemic, relatively little attention focused on experiences of people with long-lasting symptoms, particularly young adults who were commonly understood to be invulnerable to serious effects of the virus. Drawing on narrative interviews with 15 adults in their twenties and living in the UK when they became ill with long COVID, we explore contextual factors which made their long COVID illness experience, and the wholescale disruption to their lives, challenging. We propose that existing adaptations of the concept of biographical disruption are problematic for this group, and instead suggest that 'biographical retrogression' may more accurately reflect these young adults' experiences. For many of these young adults, their illness occurred at a crucial stage in forming or solidifying (presumed) adult trajectories. Secondly, the recency of long COVID did not allow for comparison with an existing 'grand narrative' of recovery, so the future course of their illness was not just unknown for them as individuals; there was no prognostic map against which to assess their symptoms. Thirdly, the lives of people with long COVID have been disrupted in the context of global societal disruption by the same virus, rendering their experiences both topical yet invisible.

Implementation of a Web-Based Outpatient Asynchronous Consultation Service: Mixed Methods Study.

BACKGROUND: Asynchronous outpatient patient-to-provider communication is expanding in UK health care, requiring evaluation. During the pandemic, Aberdeen Royal Infirmary in Scotland expanded its outpatient asynchronous consultation service from dermatology (deployed in May 2020) to gastroenterology and pain management clinics. OBJECTIVE: We conducted a mixed methods study using staff, patient, and public perspectives and National Health Service (NHS) numerical data to obtain a rounded picture of innovation as it happened. METHODS: Focus groups (3 web-based and 1 face-to-face; n=22) assessed public readiness for this service, and 14 interviews with staff focused on service design and delivery. The service's effects were examined using NHS Grampian service use data, a patient satisfaction survey (n=66), and 6 follow-up patient interviews. Survey responses were descriptively analyzed. Demographics, acceptability, nonattendance rates, and appointment outcomes of users were compared across levels of area deprivation in which they live and medical specialties. Interviews and focus groups underwent theory-informed thematic analysis. RESULTS: Staff anticipated a simple technical system transfer from dermatology to other receptive medical specialties, but despite a favorable setting and organizational assistance, it was complicated. Key implementation difficulties included pandemic-induced technical integration delays, misalignment with existing administrative processes, and discontinuity in project management. The pain management clinic began asynchronous consultations (digital appointments) in December 2021, followed by the gastroenterology clinic in February 2022. Staff quickly learned how to explain and use this service. It was thought to function better for pain management as it fitted preexisting practices. From May to September 2022, the dermatology (adult and pediatric), gastroenterology, and pain management clinics offered 1709 appointments to a range of patients (n=1417). Digital appointments reduced travel by an estimated 44,712 miles (~71,956.81 km) compared to the face-to-face mode. The deprivation profile of people who chose to use this service closely mirrored that of NHS Grampian's population overall. There was no evidence that deprivation impacted whether digital appointment users subsequently received treatment. Only 18% (12/66) of survey respondents were unhappy or very unhappy with being offered a digital appointment. The benefits mentioned included better access, convenience, decreased travel and waiting time, information sharing, and clinical flexibility. Overall, patients, the public, and staff recognized its potential as an NHS service but highlighted informed choice and flexibility. Better communication-including the use of the term assessment instead of appointment-may increase patient acceptance. CONCLUSIONS: Asynchronous pain management and gastroenterology consultations are viable and acceptable. Implementing this service is easiest when existing administrative processes face minimal disruption, although continuous support is needed. This study can inform practical strategies for supporting staff in adopting asynchronous consultations (eg, preparing for nonlinearity and addressing task issues). Patients need clear explanations and access to technical support, along with varied consultation options, to ensure digital inclusion.

Identifying key health system components associated with improved outcomes to inform the re-configuration of services for adults with rare autoimmune rheumatic diseases: a mixed-methods study.

BACKGROUND: Adults with rare autoimmune rheumatic diseases face unique challenges and struggles to navigate health-care systems designed to manage common conditions. Evidence to inform an optimal service framework for their care is scarce. Using systemic vasculitis as an exemplar, we aimed to identify and explain the key service components underpinning effective care for rare diseases. METHODS: In this mixed-methods study, data were collected as part of a survey of vasculitis service providers across the UK and Ireland, interviews with patients, and from organisational case studies to identify key service components that enable good care. The association between these components and patient outcomes (eg, serious infections, mortality) and provider outcomes (eg, emergency hospital admissions) were examined in a population-based data linkage study using routine health-care data obtained from patients with antineutrophil cytoplasmic antibody (ANCA)-associated vasculitis from national health datasets in Scotland. We did univariable and multivariable analyses using Bayesian poisson and negative binomial regression to estimate incident rate ratios (IRRs), and Cox proportional hazards models to estimate hazard ratios (HRs). People with lived experiences were involved in the research and writing process. FINDINGS: Good care was characterised by service components that supported timely access to services, integrated care, and expertise. In 1420 patients with ANCA-associated vasculitis identified from national health datasets, service-reported average waiting times for new patients of less than 1 week were associated with fewer serious infections (IRR 0·70 [95% credibility interval 0·55-0·88]) and fewer emergency hospital admissions (0·78 [0·68-0·92]). Nurse-led advice lines were associated with fewer serious infections (0·76 [0·58-0·93]) and fewer emergency hospital admissions (0·85 [0·74-0·96]). Average waiting times for new patients of less than 1 week were also associated with reduced mortality (HR 0·59 [95% credibility interval 0·37-0·93]). Cohorted clinics, nurse-led clinics, and specialist vasculitis multi-disciplinary team meetings were associated with fewer serious infections (IRR 0·75 [0·59-0·96] for cohorted clinics; 0·65 [0·39-0·84] for nurse-led clinics; 0·72 [0·57-0·90] for specialist vasculitis multi-disciplinary team meetings) and emergency hospital admissions (0·81 [0·71-0·91]; 0·75 [0·65-0·94]; 0·86 [0·75-0·96]). Key components were characterised by their ability to overcome professional tensions between specialties. INTERPRETATION: Key service components associated with important health outcomes and underpinning factors were identified to inform initiatives to improve the design, delivery, and effectiveness of health-care models for rare autoimmune rheumatic diseases. FUNDING: Versus Arthritis.

Experiences of predictive genetic testing in inherited motor neuron disease: Findings from a qualitative interview study.

Predictive genetic testing is increasingly available for individuals with a heightened risk of motor neuron disease (MND). However, little is known about how they decide whether or not to get tested, and how they experience this process. This paper reports findings from a constructivist grounded theory-informed interview study with 24 family members of people with identified or suspected inherited MND (iMND). Fourteen did not know their genetic status, and nine had decided to have predictive testing, of whom six tested positive for the pathogenic gene variant identified in their family and three tested negative. One additional person was identified as negative through a parent's negative result. This paper explores the diverse ways people approached testing, and the many factors and motivations involved, based on personal attitudes and goals, experiences of living with genetic risk, and wider family considerations and circumstances. Results were met with a range of emotions; whatever the outcome, the news disrupted each person's view of the future, and they adapted in their own way and time. Support after results was variable and a perceived lack of support impacted coping and the ability to move forwards. This paper situates findings against literature on other genetic conditions, highlighting experiences as grounded in the unique characteristics of iMND. Thus, it emphasizes the need for disease-specific guidelines and support structures around predictive genetic testing in this context. Understanding people's experiences and responding to these needs is particularly timely given the uptake of testing amongst this group is anticipated to rise with increasing access to genetic testing for people with MND, and gene-specific clinical trials.

Fluctuating salience in those living with genetic risk of motor neuron disease: A qualitative interview study.

BACKGROUND: Motor neuron disease (MND) (also known as amyotrophic lateral sclerosis) is a life-limiting neurodegenerative condition. In up to 20% of people with MND, a pathogenic variant associated with autosomal dominant inheritance can be identified. Children of people carrying a pathogenic variant have a 50% chance of inheriting this and a higher, although harder to predict, chance of developing the disease compared to the general adult population. This paper explores the experience of living with the genetic risk of MND. METHODS: We undertook a UK-based interview study with 35 individuals, including: 7 people living with genetically-mediated forms of MND; 24 asymptomatic relatives, the majority of whom had an increased risk of developing the disease; and 4 unrelated partners. RESULTS: We explore how individuals make sense of genetic risk, unpacking the interplay between genetic knowledge, personal perception, experiences of the disease in the family, age and life stage and the implications that living with risk has for different aspects of their lives. We balance an emphasis on the emotional and psychological impact described by participants, with a recognition that the salience of risk fluctuates over time. Furthermore, we highlight the diverse strategies and approaches people employ to live well in the face of uncertainty and the complex ways they engage with the possibility of developing symptoms in the future. Finally, we outline the need for open-ended, tailored support and information provision. CONCLUSIONS: Drawing on wider literature on genetic risk, we foreground how knowledge of MND risk can disrupt individuals' taken-for-granted assumptions on life and perceptions of the future, but also its contextuality, whereby its relevance becomes more prominent at critical junctures. This research has been used in the development of a public-facing resource on the healthtalk.org website. PATIENT OR PUBLIC CONTRIBUTION: People with experience of living with genetic risk were involved throughout the design and conduct of the study and advised on aspects including the topic guide, sampling and recruitment and the developing analysis. Two patient and public involvement contributors joined a formal advisory panel.

Rurality, healthcare and crises: Investigating experiences, differences, and changes to medical care for people living in rural areas.

Healthcare provision in rural areas is a global challenge, characterised by a dispersed patient population, difficulties in the recruitment and retention of healthcare professionals and a physical distance from hospital care. This research brings together both public and doctor perspectives to explore the experience of healthcare across rural Scotland, against the backdrop of contemporary crises, including a global pandemic and extreme weather events. We draw on two studies on rural healthcare provision to understand how healthcare services have been experienced, changed and might move on after periods of short- and longer-term change caused by such crises. We highlight the importance of communicating service changes to aid in setting healthcare expectations and advocate a mixed approach to the introduction of digital solutions to best balance access to services in rural areas with the challenges of digital connectivity and literacy.

Supporting people with type 2 diabetes in effective use of their medicine through mobile health technology integrated with clinical care (SuMMiT-D pilot): results of a feasibility randomised trial.

BACKGROUND: The purpose of this 6-month intervention pilot feasibility randomised trial was to test sending brief messages using mobile phones to promote self-management through taking medication as prescribed to people with type 2 diabetes. This was to inform the design and conduct of a future large-scale United Kingdom-based clinical trial and establish the feasibility of recruitment, the technology used, follow-up, and data collection. METHODS: A multicentre individually randomised, controlled parallel group trial in primary care, recruiting adults (≥ 35 years) with type 2 diabetes in England. Consenting participants were randomly allocated to receive short message system text messages up to four times a week, or usual care, for a period of 6 months; messages contained behavioural change techniques targeting medication use. The primary outcome was the rate of recruitment to randomisation of participants to the trial with a planned rate of 22 participants randomised per month. The study also aimed to establish the feasibility of follow-up at 6 months, with an aim of retaining more than 80% of participants. Data, including patient-reported measures, were collected at baseline and the end of the 6-month follow-up period, and a notes review was completed at 24 months. RESULTS: The trial took place between 26 November 2018 and 30 September 2019. In total 209 participants were randomly allocated to intervention (n = 103) or usual care (n = 106). The maximum rate of monthly recruitment to the trial was 60-80 participants per month. In total, 12,734 messages were sent to participants. Of these messages, 47 were identified as having failed to be sent by the service provider. Participants sent 2,864 messages to the automated messaging system. Baseline data from medical records were available for > 90% of participants with the exception of cholesterol (78.9%). At 6 months, a further HbA1c measurement was reported for 67% of participants. In total medical record data were available at 6 months for 207 (99.0%) of participants and completed self-report data were available for 177 (84.7%) of participants. CONCLUSION: The feasibility of a large-scale randomised evaluation of brief message intervention for people with type 2 diabetes appears to be high using this efficient design. Failure rate of sending messages is low, rapid recruitment was achieved among people with type 2 diabetes, clinical data is available on participants from routine medical records and self-report of economic measures was acceptable. TRIAL REGISTRATION: ISCTRN ISRCTN13404264. Registered on 10 October 2018.

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.

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.

Is bureaucracy being busted in research ethics and governance for health services research in the UK? Experiences and perspectives reported by stakeholders through an online survey.

BACKGROUND: It has long been noted that the chain from identification of need (research gap) to impact in the real world is both long and tortuous. This study aimed to contribute evidence about research ethics and governance arrangements and processes in the UK with a focus on: what works well; problems; impacts on delivery; and potential improvements. METHODS: Online questionnaire widely distributed 20th May 2021, with request to forward to other interested parties. The survey closed on 18th June 2021. Questionnaire included closed and open questions related to demographics, role, study objectives. RESULTS: Responses were received from 252 respondents, 68% based in universities 25% in the NHS. Research methods used by respondents included interviews/focus groups (64%); surveys/questionnaires (63%); and experimental/quasi experimental (57%). Respondents reported that participants in the research they conducted most commonly included: patients (91%); NHS staff (64%) and public (50%). Aspects of research ethics and governance reported to work well were: online centralised systems; confidence in rigorous, respected systems; and helpful staff. Problems with workload, frustration and delays were reported, related to overly bureaucratic, unclear, repetitive, inflexible and inconsistent processes. Disproportionality of requirements for low-risk studies was raised across all areas, with systems reported to be risk averse, defensive and taking little account of the risks associated with delaying or deterring research. Some requirements were reported to have unintended effects on inclusion and diversity, particularly impacting Patient and Public Involvement (PPI) and engagement processes. Existing processes and requirements were reported to cause stress and demoralisation, particularly as many researchers are employed on fixed term contracts. High negative impacts on research delivery were reported, in terms of timescales for completing studies, discouraging research particularly for clinicians and students, quality of outputs and costs. Suggested improvements related to system level changes / overall approach and specific refinements to existing processes. CONCLUSIONS: Consultation with those involved in Health Services Research in the UK revealed a picture of overwhelming and increasing bureaucracy, delays, costs and demoralisation related to gaining the approvals necessary to conduct research in the NHS. Suggestions for improvement across all three areas focused on reducing duplication and unnecessary paperwork/form filling and reaching a better balance between risks of harm through research and harms which occur because research to inform practice is delayed or deterred.

Implementing a text message-based intervention to support type 2 diabetes medication adherence in primary care: a qualitative study with general practice staff.

BACKGROUND: The Support through Mobile Messaging and digital health Technology for Diabetes (SuMMiT-D) project has developed, and is evaluating, a mobile phone-based intervention delivering brief messages targeting identified behaviour change techniques promoting medication use to people with type 2 diabetes in general practice. The present study aimed to inform refinement and future implementation of the SuMMiT-D intervention by investigating general practice staff perceptions of how a text message-based intervention to support medication adherence should be implemented within current and future diabetes care. METHODS: Seven focus groups and five interviews were conducted with 46 general practice staff (including GPs, nurses, healthcare assistants, receptionists and linked pharmacists) with a potential role in the implementation of a text message-based intervention for people with type 2 diabetes. Interviews and focus groups were audio-recorded, transcribed and analysed using an inductive thematic analysis approach. RESULTS: Five themes were developed. One theme 'The potential of technology as a patient ally' described a need for diabetes support and the potential of technology to support medication use. Two themes outlined challenges to implementation, 'Limited resources and assigning responsibility' and 'Treating the patient; more than diabetes medication adherence'. The final two themes described recommendations to support implementation, 'Selling the intervention: what do general practice staff need to see?' and 'Fitting the mould; complementing current service delivery'. CONCLUSIONS: Staff see the potential for a text message-based support intervention to address unmet needs and to enhance care for people with diabetes. Digital interventions, such as SuMMiT-D, need to be compatible with existing systems, demonstrate measurable benefits, be incentivised and be quick and easy for staff to engage with. Interventions also need to be perceived to address general practice priorities, such as taking a holistic approach to care and having multi-cultural reach and relevance. Findings from this study are being combined with parallel work with people with type 2 diabetes to ensure stakeholder views inform further refinement and implementation of the SuMMiT-D intervention.

Visual identifiers for people with dementia in hospitals: a qualitative study to unravel mechanisms of action for improving quality of care.

BACKGROUND: Hospitalised people with dementia (PwD) experience worse care and more patient safety incidents than non-dementia patients. Visual identifiers are commonly used to identify patients who have a diagnosis of dementia, with the aim of promoting more personalised care. However, little is known about how they work in practice, nor about the potential unintended consequences that might arise from their use. We aim to identify the mechanisms through which visual identifiers could support good care for PwD, how and why their use may have negative consequences and the conditions for their effective use. METHODS: We conducted interviews with 21 dementia leads and healthcare professionals, 19 carers and two PwD, and produced case studies of visual identification systems in four UK acute hospital trusts between 2019 and 2021. Analysis drew on the concept of classification to identify and explore mechanisms of action. RESULTS: We identified four mechanisms through which visual identifiers could help towards providing good care for PwD: enabling coordination of care at organisational level; signalling eligibility for dementia-specific interventions; informing prioritisation of resources on wards; and acting as a quick reference cue for staff. But identifier effectiveness could be undermined by: lack of standardisation and consistency; a lack of closely coupled information about individual needs; and stigma associated with a dementia diagnosis. Identifier effectiveness was dependent on their implementation being supported through staff training, resources directed and efforts to develop a supportive culture for caring for this patient group. CONCLUSION: Our research highlights the potential mechanisms of action of visual identifiers and their possible negative consequences. Optimising the use of identifiers requires consensus on the rules of classification and the symbols used, and closely coupled patient information. Organisations need to provide support, offer the right resources and training and engage meaningfully with carers and patients about the use of identifiers.

Treatment burden in survivors of prostate and colorectal cancers: a qualitative interview study.

OBJECTIVES: Treatment burden is the workload of healthcare and the impact this has on the individual. Treatment burden is associated with poorer patient outcomes in several chronic diseases. Illness burden has been extensively studied in cancer, but little is known about treatment burden, particularly in those who have completed primary treatment for cancer. The aim of this study was to investigate treatment burden in survivors of prostate and colorectal cancers and their caregivers. DESIGN: Semistructured interview study. Interviews were analysed using Framework and thematic analysis. SETTING: Participants were recruited via general practices in Northeast Scotland. PARTICIPANTS: Eligible participants were individuals who had been diagnosed with colorectal or prostate cancer without distant metastases within the previous 5 years and their caregivers. Thirty-five patients and six caregivers participated: 22 patients had prostate and 13 had colorectal cancers (six male, seven female). RESULTS: The term 'burden' did not resonate with most survivors, who expressed gratitude that time invested in cancer care could translate into improved survival. Cancer management was time consuming, but workload reduced over time. Cancer was usually considered as a discrete episode. Individual, disease and health system factors protected against or increased treatment burden. Some factors, such as health service configuration, were potentially modifiable. Multimorbidity contributed most to treatment burden and influenced treatment decisions and engagement with follow-up. The presence of a caregiver protected against treatment burden, but caregivers also experienced burden. CONCLUSIONS: Intensive cancer treatment and follow-up regimens do not necessarily lead to perceived burden. A cancer diagnosis serves as a strong motivator to engage in health management, but a careful balance exists between positive perceptions and burden. Treatment burden could lead to poorer cancer outcomes by influencing engagement with and decisions about care. Clinicians should ask about treatment burden and its impact, particularly in those with multimorbidity. TRIAL REGISTRATION NUMBER: NCT04163068.

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.

Negotiation of collective and individual candidacy for long Covid healthcare in the early phases of the Covid-19 pandemic: Validated, diverted and rejected candidacy.

This analysis of people's accounts of establishing their need and experiences of healthcare for long Covid (LC) symptoms draws on interview data from five countries (UK, US, Netherlands, Canada, Australia) during the first ∼18 months of the Covid-19 pandemic when LC was an emerging, sometimes contested, condition with scant scientific or lay knowledge to guide patients and professionals in their sense-making of often bewildering constellations of symptoms. We extend the construct of candidacy to explore positive and (more often) negative experiences that patients reported in their quest to understand their symptoms and seek appropriate care. Candidacy usually considers how individuals negotiate healthcare access. We argue a crucial step preceding individual claims to candidacy is recognition of their condition through generation of collective candidacy. "Vanguard patients" collectively identified, named and fought for recognition of long Covid in the context of limited scientific knowledge and no established treatment pathways. This process was technologically accelerated via social media use. Patients commonly experienced "rejected" candidacy (feeling disbelieved, discounted/uncounted and abandoned, and that their suffering was invisible to the medical gaze and society). Patients who felt their candidacy was "validated" had more positive experiences; they appreciated being believed and recognition of their changed lives/bodies and uncertain futures. More positive healthcare encounters were described as a process of "co-experting" through which patient and healthcare professional collaborated in a joint quest towards a pathway to recovery. The findings underpin the importance of believing and learning from patient experience, particularly vanguard patients with new and emerging illnesses.

Valuing place in doctors' decisions to work in remote and rural locations.

Recruitment and retention of medical practitioners is a challenging contemporary issue for rural and remote areas. In this paper, we explore the importance of what it is that doctors value in rural and remote places from their own personal, organisational, social and spatial lives. We do this by drawing on original research from Scotland that explored doctors' decisions on choosing, or not, to work in remote and rural locations. Three themes are explored: moving and staying, using place to think holistically about places beyond the language of work that recruitment and retention implies; how doctors' professional values and their capacity to enact those values change with time; and how policy landscapes interact and shape rural and remote locations as valued places for doctors to live and work. We end the paper by reiterating the World Health Organization findings that a whole-of-society approach is required to support rural and remote communities to flourish, thus, encouraging doctors and their families to value such places and, ultimately, move and stay.

Practising in a pandemic: A real time study of primary care practitioners' experience of working through the first year of COVID-19.

This article presents reflections on the lessons learnt from developing and initiating a rapid research project in 4 weeks during the first year of the COVID-19 pandemic. The article highlights the importance of selecting methods appropriate to rapid research, discusses the challenges of data collection in a shifting context, and the importance of the research team being prepared to cede some degree of control over the data collection process. To protect staff and patients and prevent the spread of COVID-19, general practice shifted to remote service delivery and consultations occurred via the telephone or online platforms. In the study, submissions were collected from those working in general practice to capture their experiences of the first year of the COVID-19 pandemic. Participants could choose how to submit their narratives, with some preferring to be interviewed and others contributing self-recorded submissions. This article offers practical reflections in response to the challenges of carrying out rapid research during a pandemic, including the importance of constructing a research team which can respond to the demands of the study, as well as the benefits of an expedited ethical review process. The study highlighted the importance of selecting appropriate methods to facilitate the rapid collection of data. In particular, the authors reflect on the differences between participants' response to interviews, written submissions, and audio diaries. Open approaches to data collection were found to encourage participation and reflexivity and also generated rich narrative accounts. Rapid research has progressed our understanding of general practice's experience of the first year of COVID-19.

The Baby Box scheme in Scotland: A study of public attitudes and social value.

BACKGROUND: The Scottish Government introduced a free Baby Box scheme for all new parents in 2017, modelled on the Finnish scheme, to give every baby 'an equal start in life'. There is little evidence that it results in better health outcomes, but there has been limited research into different perspectives and discourses on such schemes. METHODS: Four focus groups were conducted with 21 parents in North-East Scotland. Recordings were transcribed verbatim, anonymized and analysed thematically with NVivo 12 software. Our thematic analysis was both inductive and deductive-remaining open to themes identified by participants themselves but also informed by the social policy literature on universalism and social cohesion. RESULTS: Across all the focus groups, we found a high degree of positivity about the principle of the Baby Box scheme, and for the most part the practical value of the contents. This was remarkably consistent across different communities and backgrounds. There was little evidence of the strongly polarized views present in media reporting. Parents seemed considerably less focused than the media on safety and health outcomes, and more focused on practical, material and social impacts. They reported little in the way of feeling patronized or monitored by the government. CONCLUSION: Our findings have important implications for future economic evaluations of the baby box. Such evaluations should broaden the valuation space beyond health outcomes to allow for the value of feelings of inclusion, solidarity and being part of a community. PATIENT OR PUBLIC CONTRIBUTION: This small project was designed in response to parent views already collected in the early roll-out of the Baby Box scheme in Scotland, about their priorities and responses to the scheme. Additional views were sought on the topic guide for the focus groups, and local community groups advised us on recruitment and the best timing and location for the focus groups to be held. The focus groups themselves were conducted as research, but with the intent of ensuring parent views featured more prominently in a debate that has been largely dominated by clinical and public health perspectives.

'Language has been granted too much power'.1,p.1 Challenging the power of words with time and flexibility in the precommencement stage of research involving those with cognitive impairment.

Meaningful and inclusive involvement of all people affected by research in the design, management and dissemination of that research requires skills, time, flexibility and resources. There continue to be research practices that create implicit and explicit exclusion of some members of the public who may be 'seldom heard' or 'frequently ignored'. Our focus is particularly on the involvement of people living with cognitive impairment, including people with one of the many forms of dementia and people with learning disabilities. We reflect especially on issues relating to the precommencement stage of research. We suggest that despite pockets of creative good practice, research culture remains a distinct habitus that continues to privilege cognition and articulacy in numerous ways. We argue that in perpetuating this system, some researchers and the institutions that govern research are committing a form of bureaucratic violence. We call for a reimagining of the models of research governance, funding and processes to incorporate the time and flexibility that are essential for meaningful involved research, particularly at the precommencement stage. Only then will academic health and social science research that is truly collaborative, engaged, accessible and inclusive be commonplace. PUBLIC AND PATIENT CONTRIBUTION: This viewpoint article was written by a research network of academics with substantial experience in undertaking and researching patient and public involvement and codesign work with representatives of the public and patients right across the health system. Our work guided the focus of this viewpoint as we reflected on our experiences.