Background Effective communication during consultations is facilitated by clinical empathy and realistic optimism, and can enhance patient satisfaction with care, alleviate symptoms, and improve quality of life. However, primary care systems are under significant strain and changing rapidly, which may affect practitioners' ability to communicate empathically and convey realistic optimism, with implications for the patient-practitioner relationship and patient outcomes. Understanding patients' perspectives of healthcare communication in the current clinical context is therefore important. We aimed to explore patients' experiences and perceptions of communication in UK primary care consultations, focussing on the communication of clinical empathy and realistic optimism. Methods A qualitative interview study was conducted as part of a multi-centre cluster-randomised trial of EMPathicO, a brief e-learning package for Primary Care Practitioners (PCPs) on communicating clinical empathy and realistic optimism. Participants were not aware whether their general practice had access to EMPathicO or not. Interviews were conducted within 7-14 days of participants' consultations, explored their views and experiences of clinical empathy and realistic optimism, and were transcribed verbatim. Interviews were analysed using Ritchie and Spencer's Framework Method. Results We conducted semi-structured audio-recorded qualitative telephone interviews with 71 participants from 29 primary care practices taking part in the EMPathicO trial. Following comprehensive mapping of data to the framework derived following initial analysis, four themes were agreed. Overall, most participants described positive empathic consultations with their PCPs, however, participants' experiences were shaped by wider systemic and contextual factors. They described a stretched and inefficient primary care system impacting empathy and optimism; the impact of PCP 'preparedness' as a marker for empathy; how consultation modality (i.e. in-person or telephone) shaped perceptions of empathy, and how PCPs sharing next steps in participants' treatment and management could foster realistic optimism. Conclusions While clinical empathy and realistic optimism may be experienced by patients during consultations with practitioners, the wider contextual challenges of accessing and navigating primary care systems can threaten overall perceptions of feeling cared for. Future primary care policy and workforce training must consider these system pressures to preserve effective communication in consultations and positive patient-practitioner encounters.
Multiple long-term conditions (MLTC) are increasingly prevalent among UK adults, yet the extent to which remission of long-term conditions is recorded in routine primary care remains poorly understood. Accurate documentation of remission has implications for clinical management, disease trajectories, and the use of electronic health records in research. Examining remission in the context of MLTC is important because remission in one condition may alter overall disease burden and treatment needs in people living with several coexisting conditions. We aimed to describe the frequency and variation of recorded remission across multiple long-term conditions among adults. We conducted a retrospective cohort study using linked primary care, hospital, and CPRD Aurum data. Adults aged ≥ 18 with MLTC (≥ 2 long-term conditions) between Jan 1, 1987, and Dec 31, 2020, were included. Remission was defined using condition-specific criteria based on remission or resolution codes, relevant clinical measurements meeting predefined thresholds, treatment patterns, and condition-specific clinical events recorded in electronic health records. We examined remission for 10 conditions with operationalizable definitions. Analyses were descriptive, summarising remission frequencies and sociodemographic patterns. Among 4,745,099 adults followed for a median of 8 years, 900,609 (19
BackgroundThe importance of inclusivity in health care and health research is increasingly recognised in the UK. However, there are currently no UK standards for collecting self-reported demographic data from research participants. To address this gap, we undertook a public involvement activity. We worked with patient and public involvement partners and members of the public to establish an acceptable set of demographic questions for adult participants, taken from national survey questions to ensure comparable data.MethodsOur project team, which included two patient and public involvement partners, selected demographic questions that covered characteristics protected by the UKs Equality Act 2010 or groups identified as potentially underserved in research. These questions covered health, disability, and unpaid care; education and employment; sexual orientation and gender identity; and ethnicity, language, and religion. We conducted four discussion groups to review the proposed questions with diverse members of the public. We explored their views on questions, the explanatory text for the purpose of data collection, data storage (i.e. pseudonymised or anonymous), the length of the question set and any missing topics.ResultsTwenty-nine public contributors took part. Of these, at least ten were from a minority ethnic background and eleven had one or more disabilities or long-term health conditions. Five contributors were people of faith, three were members of the LGBTQIA+ community, and seven had experience of providing unpaid care. Of the 18 questions, three were removed and ten were modified. This resulted in a revised question set of 15 items.ConclusionsThe implementation of this question set will help to standardise data collection across studies, increasing comparability and researchers' ability to evaluate inclusivity. The demographic question set is now available to non-commercial researchers across the UK as part of a pilot study to evaluate and improve its utility and performance.
BackgroundMultiple long-term conditions (MLTCs) require complex and prolonged treatment regimens. Remission in long-term conditions (LTCs) is important for understanding disease progression and evaluating treatment effectiveness. Electronic health records (EHRs) are increasingly used to monitor clinical outcomes, but how remission is defined within EHRs remains unclear. ObjectiveThis study aimed to summarize and collate the previous literature on how remission of LTCs has been defined in EHRs. MethodsSystematic electronic searches were performed on OVID MEDLINE, Embase, CINAHL EBSCO, the Cochrane Library, and the Bielefeld Academic Search Engine for eligible studies published from inception to November 27, 2025. Quantitative studies, published in any language, on adult populations, and using EHRs to assess remission of LTCs, were eligible for inclusion. Studies that did not clearly define remission and studies on cancer remission were excluded. Data were extracted from each eligible study using a structured table. Risk of bias was not assessed, in line with scoping review methodology. A narrative approach was taken to summarize and present data from the included studies. The number and characteristics of studies were described, both overall and by condition. Findings were discussed with clinicians and data experts to ensure applicability in clinical practice. ResultsNinety-one studies were included. Sample sizes ranged from 12 to 72.9 million adults. Studies were conducted in 18 countries, with the majority being from the United States. The majority of included studies used a cohort study design. Studies assessed how remission was defined in 12 LTCs, including inflammatory bowel disease (41/91, 45.1%), type 2 diabetes (n=15, 16.5%), depression (n=15, 16.5%), alcohol or drug misuse (n=8, 8.8%), asthma (n=3, 3.3%), multiple sclerosis (n=3, 3.3%), epilepsy (n=1, 1.1%), anemia (n=1, 1.1%), chronic kidney disease (n=1, 1.1%), autoimmune pancreatitis (n=1, 1.1%), hypertension (n=1, 1.1%), heart failure (n=1, 1.1%), and MLTC (n=1, 1.1%). Remission was typically defined using a combination of clinical codes (n=7, 7.7%), validated rating scales (n=56, 61.5%), biochemical markers (n=29, 31.9%), absence of symptoms (n=10, 11%), absence of condition-specific events (eg, hospital admissions; n=4, 4.4%), and cessation of pharmacological treatments (n=26, 28.6%). There was substantial variation in the criteria and duration of follow-up used to define remission across studies. ConclusionsThis review demonstrates that remission of LTCs can be identified and operationalized within EHRs, although remission criteria varied across studies. The review extends the literature on remission in EHRs by combining evidence synthesis and consultation with clinical and data experts to propose standardized comprehensive definitions to reliably define and implement remission of multiple LTCs in EHR-based research. This will allow cross-study comparisons and present an opportunity to advance understanding of disease trajectories and improve evaluation and monitoring of patient outcomes. Further research may apply, compare, and evaluate standardized definitions across different data sources to assess generalizability and further improve our understanding of remission of LTCs.
BACKGROUND:In countries with well-resourced primary care, most children with eczema are managed by their general practitioner, but we know little about how often they are seen or how they are treated. OBJECTIVES:To describe patterns of consultations and prescribing by eczema severity for children with eczema. METHODS:Analysis of electronic medical record data from 422 participants in the BATHE study. We used descriptive statistics to compare participants' characteristics, consultation and prescribing patterns. We explored associations with eczema severity [Patient-Oriented Eczema Measure (POEM)], age and sex using Poisson and linear regression models. RESULTS:Mean age 4.8 (SD 2.9) years and POEM 10.0 (SD 5.8). Over 12 months, 386 children had a median of 4.0 (interquartile range 2.0-7.0) consultations. Of 2049 encounters, 1421 (69.4%) were for an eczema flare. Emollients were the most commonly prescribed item, with a mean of 4.6 (SD 4.5) prescriptions (median total quantity 1500 g or mL) per child over 12 months, yet 32.2% (136/422) were not prescribed any. On average, children were prescribed 1.3 (SD 0.5) different emollient types, with cream being most common [74.3% (211/284) children, 59.8% (778/1300) prescriptions]. In total, 51.7% (218/422) were prescribed a topical corticosteroid (TCS) with a mean of 2.8 (SD 2.5) prescriptions (90 g or mL) per child over 12 months and a mean of 1.4 (SD 0.6) different TCS potency types [mild being the most common 71.6% (151/211) children, 54.2% (316/583) prescriptions]. The number of consultations, but not the quantity of emollients and TCS prescribed, was associated with age and eczema severity. CONCLUSIONS:Children with eczema are seen frequently in primary care but are prescribed less emollient and TCS than might be appropriate for age and severity.
Background:Cognitive impairment affects health and social care. Intensive multicomponent interventions work but are impractical for primary care. The study aimed to trial brief approaches for cognitive health. Methods:This was an open-label trial among adults aged 60-85 years with internet access and low cognitive scores (SD ≥1 below normal on the Baddeley verbal reasoning test, the cognitive criteria for age-associated-cognitive decline [AACD]). We used computer-generated random numbers to allocate participants to one of three groups: (1) Active Brains website (supporting physical activity, a Mediterranean diet, and cognitive exercises); (2) Active Brains plus brief support (three email or telephone sessions); or (3) control (evidence-based advice for cognitive health). The primary outcome was Baddeley verbal reasoning score at 12 months analysed by intention-to-treat with multiple imputation for missing data; follow-up for a co-primary outcome of dementia at 5 years is ongoing. The key secondary outcome was to describe the clinically important cutpoints of the Baddeley test. The trial is registered with International Standard Randomised Controlled Trial (ISRCTN17349359), is closed to new participants, and follow-up is ongoing. Findings:Between Oct 3, 2020, and Oct 30, 2023, 11 563 participants from 670 practices were randomly assigned to either the active brains group (n=3169), active brains plus support (n=3087), or control (n=3927; intention-to-treat population). Participants were predominantly White (11 087 [95·8%]), 6697 (57·9%) were female, and 8142 (70·4%) were retired. Recruitment and 12-month follow-up (median 366 days in all groups) are complete. Baseline mean Baddeley verbal reasoning score was 15·1 (SD 6·4) in the control group, 15·3 (6·2) in the Active Brains group, and 15·1 (6·4) in the Active Brains plus support group. 12-month data were available for the primary outcome for 3113 (79·3%) of 3927 participants in the control group, 2564 (67·3%) of 3810 in the Active Brains group, and 2566 (67·1%) of 3826 in the Active Brains plus support group. At 12 months, mean Baddeley verbal reasoning score was 18·3 (SE 0·14) in the control group, 18·7 (SE 0·16) in the Active Brains group (adjusted mean difference vs control +0·50, 95% CI 0·13-0·87), and 19·2 (SE 0·16) in the Active Brains plus support group (+0·97, 0·59-1·34). This resulted in a substantial minority in all groups no longer meeting the cognitive criteria for AACD (883 [28·4%] of 3113 in the control group; 842 [32·8%] of 2566 in the Active Brains group; 811 [31·6%] of 2546 in the Active Brains plus support group), and fewer in the Active Brains plus support group (but not the Active Brains group) met cognitive criteria for mild or severe cognitive impairment. Serious adverse events and deaths, all unrelated to treatment, were similar in all groups. Serious adverse events occurred in 33 (0·87%) of 3810 in the Active Brains group, 32 (0·84%) of 3826 in the Active Brains plus support group, and 28 (0·71%) of 3927 in the control group. Deaths occurred in 20 (0·5%) in the Active Brains group, 17 (0·4%) in the Active Brains plus support group, and 19 (0·5%) in the control group. Interpretation:Very brief intervention (eg, cognitive testing, documenting brain-stimulating activities, and evidence-based advice on brain health) in primary care is likely to improve cognitive health among individuals with low cognitive functioning. This study further supports the additional use of scalable online interventions for cognitive impairment in that require minimal support. Research is needed to assess the longer term effects of these interventions. Funding:National Institute for Health and Care Research Programme Grants for Applied Research.
Background Acne is common with substantial impact on quality of life and health care costs. Antibiotics are frequently prescribed, leading to antibiotic resistance. Guidelines recommend topical treatments as first-line therapy, but they are under-used due to low awareness, avoidable side effects or delayed onset of action. AcneCareOnline, an online behavioural intervention, was developed to support self-management for young people with acne. Methods Multi-centre 1:1 randomized controlled trial with economic evaluation and process evaluation of AcneCareOnline. The trial will recruit people aged 13–25 years with self-defined acne and active lesions (on self-assessment scale). Participants will be recruited through English general practices, community pharmacies, schools/colleges, community and social media advertising. Intervention group receive access to AcneCareOnline. Control group are signposted to NHS advice and given access to the intervention after follow-up. Both groups have access to usual care. Follow-up is for 52 weeks. Target sample size is 908 participants. Outcomes Primary outcome is acne severity at 12 weeks, measured using Acne-QoL symptoms subscale. Secondary outcomes include; acne severity evaluated over 12 months (Acne-QoL symptoms subscale), other Acne-QoL subscales; self-reported treatment use, Patient Enablement Instrument, Brief Illness Perceptions Questionnaire, Patient Health Questionnaire, EQ-5D-5L, Short Warwick Edinburgh Mental Well-being Scale, and resource use. Process evaluation includes qualitative interviews to explore trial participants’ engagement with the intervention and quantitative examination of potential moderator effects on intervention engagement. Economic evaluation includes cost utility analyses to estimate the cost-effectiveness of the online intervention compared to usual care alone from NHS and participant perspectives.
Abstract Background Mental ill-health and loneliness represent major challenges for today’s youth, exacerbated by unprecedented societal demands, including concurrent socialisation in physical and digital worlds. A strong sense of belonging can buffer against these challenges, and in adolescents is largely constituted in schools. Augmented Social Play (ASP) involves smartphone-led cooperative face-to-face gameplay which integrates immersive storytelling, augmented reality, and evidence-based psychology to strengthen belonging. Building on this foundation, Lina is a multi-session intervention designed for classroom-based delivery during routine school lessons. Methods Three parallel hybrid type II cluster pragmatic randomised controlled trials will be conducted in secondary schools in Czechia, Portugal and the UK. The independently powered and analysed trials will examine the effectiveness of Lina —compared to standard lessons—in strengthening classroom belonging, reducing symptoms of mental ill-health and improving wellbeing, loneliness and stigma. Forty classes of students whose modal age is 12–13 years will participate in each country. Effectiveness will be examined on completion of Lina and after 6 months, using the student-report Delaware School Climate Survey, the Social Anxiety Scale for Adolescents, the Patient Health Questionnaire-8, the Social Awareness subscale of the Social-Emotional Learning Edition of the Strengths and Difficulties Inventory System, the WHO-5 Well-being Index, the UCLA Loneliness Scale and a tailored version of the Peer Mental Health Stigmatisation Scale-Revised. To examine cost-effectiveness, quality of life will be measured in a corresponding manner, using the Child Health Utility 9D and the EQ-5D-Y-3L, and analysed alongside bespoke resource-use inventories, completed via teachers and/or school records. An embedded developmental evaluation of implementation will draw on researcher observations of Lina , teacher-reported Feasibility, Acceptability and Appropriateness of Intervention questionnaires and teacher focus groups. A second developmental phase of implementation evaluation will follow the effectiveness trial, while control classes do Lina with their teachers. An integrated qualitative evaluation will examine students’ experiences of Lina using individual interviews and focus groups, including a particular focus on students with characteristics that put their sense of belonging at risk. Discussion Findings will speak to the potential impact of Lina on youth mental health. They will also inform Lina implementation guidance for diverse national and international school contexts. Trial registry information This trial is prospectively registered with ISRCTN (Identifier: ISRCTN11613092), registered on 15 September 2025, https://doi.org/10.1186/ISRCTN11613092 .
Introduction Regular physical activity and limiting sedentary behaviour are important aspects in managing multiple sclerosis (MS). Fatigue is a common and disabling symptom in MS, contributing to impairments in activities of daily living and poorer quality of life. This study aims to determine the effectiveness of a physical activity and sedentary behaviour intervention, called iStep-MS, for reducing fatigue in people with MS when delivered across the MS care pathway.Methods and analysis This is a multicentre, two-arm randomised controlled superiority trial with embedded economic and process evaluations. The study will take place across South-East England in acute and community National Health Service settings and charity-funded MS and neurological therapy centres. Intervention deliverers will include a range of healthcare staff such as physiotherapists, occupational therapists, therapy assistants, nurses and exercise therapists. A target sample size of n=198 participants will be randomised 1:1 to the intervention (iStep-MS behaviour change intervention plus usual care) or control (usual care only) arms. Participants will be adults with any type of MS, experiencing MS-related fatigue, relapse-free for >3 months, with a Self-Reported Disability Status Scale category of ≤3.5 (no disability to moderate disability) or 4–6.5 (significant disability). The iStep-MS intervention includes four one-to-one consultation sessions in-person or online with an intervention deliverer over 3 months, incorporating behaviour change techniques aimed at increasing physical activity and reducing sedentary behaviour. The consultations are supported by a handbook designed to help individuals with MS set goals and achieve behavioural changes and a wearable activity tracker for self-monitoring. Outcomes (assessed at baseline, 3 months and 9 months) include self-reported fatigue, quality of life, MS-impact, walking capability, pain, self-efficacy and waist circumference. Sitting, standing and stepping will be measured over 8 days using the activPAL4 device. A process evaluation will assess intervention acceptability, adherence and fidelity, including questionnaires and focus groups with participants and deliverers. A cost-effectiveness analysis will evaluate the value for money of the intervention against usual care.Ethics and dissemination Ethical approval has been granted by the NHS London—Bloomsbury Research Ethics Committee (reference 25/LO/0272). Results will be disseminated in scientific journals, conferences and to the wider public (eg, newsletters and social media).Trial registration number ISRCTN16944301.
BACKGROUND:Making Every Contact Count' (MECC) is a person-centred initiative that enables service providers across settings to support behaviour change through conversations about health and wellbeing. MECC has been widely implemented across the UK and internationally, although training approaches vary considerably and do not consistently translate into MECC delivery. Evidence suggests that Healthy Conversation Skills (HCS) training, which supports service users to identify their own solutions, may be an acceptable and effective means of delivering MECC across settings. This realist evaluation aims to understand which elements of HCS training work, for whom, under what circumstances, in what respects, to what extent, and why, to inform the adaptation of HCS across settings to ensure that all recipients are equipped to deliver MECC. METHODS:This mixed-methods realist evaluation will comprise pre- and post-training surveys (at baseline, immediately post-training, and approximately eight weeks post-training) and realist interviews. Two participant groups were selected for comparison: service providers working or volunteering in the voluntary, community, and social enterprise (VCSE) sector, and undergraduate pharmacy students. Initial programme theories were developed through abductive reasoning, literature scoping, and stakeholder engagement. Survey data will assess outcomes of HCS training, while realist interviews will explore how these outcomes are generated by underlying mechanisms within specific contexts. DISCUSSION:A refined programme theory will be produced, explaining how and why HCS training leads to MECC delivery across different settings. Findings will inform how HCS training can be adapted for distinct audiences, identify the core components of MECC training that must be preserved, and guide future evaluations by examining whether HCS training translates into sustained MECC delivery. The findings of this study will inform resource allocation for preventative health interventions outside of healthcare settings and thus have the potential to shape public health policy, empower non-specialist providers, and strengthen strategies for disease prevention.
Abstract Depressive symptoms are commonly experienced by people with persistent musculoskeletal (MSK) pain. There is evidence for some individuals that this may be best characterised as pain-related distress; a reaction to living with the impact of pain, rather than a depressive illness. No explorations exist of how to differentiate between these in primary care. This study aimed to explore key factors that may differentiate between pain-related distress and depression, and the effectiveness of existing symptom screening tools (Patient Health Questionnaire-9 [PHQ-9] and 4-Dimensional Symptom Questionnaire [4DSQ]) in identifying distress through a mixed methods approach. First, 21 general practitioners and 21 people with pain were interviewed about their experiences of pain-related distress. Second, 597 primary care patients with MSK pain completed a cross-sectional questionnaire study reporting on their pain, mental health symptoms, and other life events. Qualitative data suggested key factors distinguishing between pain-related distress and depression included general positive outlook, physical function, and acceptance. Quantitative findings showed that the PHQ-9 may overcategorise participants as depressed; of the 207 participants classified as distressed (but not depressed) on the 4DSQ, 118 (57%) were categorised as moderately or severely depressed on the PHQ-9. Lower positive outlook and sleep interference scores, and higher PHQ-9 and perceived stress scores significantly predicted participants experiencing distress only compared with distress and depression, matching the qualitative findings. These findings indicate that differentiation between pain-related distress and depression may be possible in primary care consultations for persistent musculoskeletal pain. This is essential to ensure that patients are offered appropriate, acceptable, and effective management.
Introduction:People with persistent musculoskeletal (MSK) pain often experience distress, distinct from depression. Current referral pathways and interventions are suboptimal for this group. We developed and tested the acceptability and proof of concept of De-Stress Pain, an intervention to reduce pain-related distress. Methods:Guided by principles from Acceptance and Commitment Therapy, behavioural activation, and the Person-Based Approach (PBA) De-Stress Pain provided 4-6 social prescriber sessions over 12 weeks, plus access to a mental wellbeing website promoting engagement in meaningful and pleasurable activities. Acceptability of the intervention and study procedures was assessed qualitatively using semi-structured interviews with participants and social prescribers before and after the intervention programme. Results:Sixteen participants were recruited and 11 completed the intervention alongside four social prescribers. Participants described the intervention as acceptable and valued the combination of social prescriber support, accountability, and encouragement to re-engage in meaningful and pleasurable activities. Social prescribers reported that the intervention was acceptable to deliver and aligned with their existing practice, although limited appointment time and participants' financial constraints could affect engagement. Some participants initially viewed pleasurable activities as indulgent, which acted as a barrier to engagement. Findings also suggested that future iterations may benefit from refining eligibility criteria to better identify individuals experiencing sufficient pain-related distress. Improvements in mood measures and participant reports of increased hope, activity, and wellbeing suggested the intervention showed promise for supporting people with pain-related distress. Conclusions:This study demonstrates that De-Stress Pain was acceptable to both participants and social prescribers and feasible to deliver within social prescribing services. The findings identified several factors requiring consideration in future iterations, including participant selection, time constraints, and financial barriers to engagement. De-Stress Pain is, to our knowledge, among the few pain-related interventions specifically designed for delivery by social prescribers within primary care settings.
BACKGROUND:The Immune Defence trial documented a short-term impact on respiratory tract infections (RTIs) for nasal sprays and a stress management and physical activity website. AIM:To estimate the impact of sprays and the website after 12 months. DESIGN AND SETTING:A four-arm parallel randomised controlled trial. Participants with comorbidities and/or ≥3 self-reported recurrent RTIs were recruited. METHOD:Participants were randomised by online software (stratified by recurrent illness and comorbidities) to a) usual care (n = 3451); b) Vicks First Defence (VFD) spray (n = 3448) (two sprays/nostril, ≤6 times a day; c) isotonic saline spray (n = 3450) (same dosing); or d) a website promoting physical activity and stress management (n = 3450). The primary outcome was respiratory illness days. RESULTS:Usual care participants (n = 3052) had on average 21.8 (standard deviation [SD] 35.2) illness days, reduced by VFD (n = 3076; 17.8 [SD 27.9] days, adjusted incidence rate ratio [IRR] 0.84, 99% confidence interval [CI] = 0.79 to 0.90, P<0.0001), and saline (n = 3142; 17.7 [SD 21.1 ] days, IRR 0.83, 99% CI = 0.78 to 0.89, P<0.0001), but not the website (n = 2811; 19.5 [SD 31.2] days, IRR 0.94, 99% CI = 0.88 to 1.01, P = 0.03). The website reduced incident infections (adjusted risk ratio [RR] 0.96, 95% CI = 0.93 to 0.99, P = 0.006). All interventions reduced symptom severity and work days lost, both spray groups reported lower intention to consult and fewer falls, and there were fewer antibiotic courses and practice visits with saline. Among those with recurrent illness, saline had the most impact on both recurrence and symptom days (RR 0.93, 95% CI = 0.87 to 0.99 and RR 0.70, 95% CI = 0.60 to 0.82, respectively). Headaches were higher for VFD and lower for saline (7.8% and 3.4%, respectively; 4.7% usual care). CONCLUSION:Widely available, inexpensive sprays and a website promoting self-care reduce the incidence, duration, and/or severity of RTIs and have an impact on work days lost and healthcare use.
BACKGROUND:Underuse of emollients and topical corticosteroids (TCS) contributes to uncontrolled atopic eczema, but variations between countries remain unclear. AIM:To compare the actual use of emollient and TCS use in childhood eczema in the UK and The Netherlands (NL) and examine treatment adherence in relation to guidelines. DESIGN & SETTING:A secondary analysis of data from the Rotterdam Eczema cohort study (n=367) (NL), the BATHE trial (n=482) (UK) and BEE trial (n=520) (UK). METHODS:Frequency of emollient and TCS use were compared at baseline and after 12-16 weeks of follow-up by age, sex and disease severity. Treatment adherence was defined as: 1 a) not using an emollient at all, 1b) not using an emollient when a TCS was used, 2) not using a TCS when eczema is mild or worse. Overall undertreatment was defined as category 1 and 2 combined. RESULTS:In total, questionnaire data from 1312 children (aged 3 months-17 years) with mostly mild (26-37%) or moderate (45-48%) eczema were analysed. Not using an emollient was significantly more prevalent in NL at baseline (14%) and follow-up (19%) than in the UK (4% and 7.6%, respectively). Not using a TCS when eczema is mild or worse differed significantly (P<0.05) between countries. The overall undertreatment rate was high and did not differ significantly between countries at baseline (UK 52.0%-NL 48.2%) and follow-up (UK 45.0%-NL 49.8%). CONCLUSION:Undertreatment with emollients and TCS are common and a reminder for clinicians to explain treatment rationale and check treatment adherence. Differences in treatment practices between countries warrant further exploration.
Background Multimorbidity is increasingly prevalent among UK adults, yet the extent to which remission of long-term conditions is recorded in routine primary care remains poorly understood. Accurate documentation of remission has implications for clinical management, disease trajectories, and interpretation of electronic health records for research. We aimed to describe the frequency and variation of recorded remission across multiple long-term conditions among adults with multimorbidity. Methods We conducted a retrospective cohort study using linked primary care, hospital, and CPRD Aurum data. Adults aged ≥18 with multimorbidity (≥2 long-term conditions) between Jan 1, 1987, and Dec 31, 2020, were included. Remission was defined using condition-specific criteria based on diagnostic or resolution codes, clinical measurements, treatment patterns, and relevant clinical events. We examined remission for 11 conditions with operationalizable definitions. Analyses were descriptive, summarising remission frequencies and sociodemographic patterns. Findings Among 4,745,099 adults followed for a median of 8 years, 900,609 (18.1%) had recorded remission of at least one condition. Remission varied substantially by condition and was highest for endometriosis (90.36%), anaemia (63.0%), asthma (44.71%), and diabetes (15.51%), calculated among individuals with an ever-recorded diagnosis of each condition. Individuals with remission were slightly younger and more often male; Asian and Black ethnic groups were under-represented, while deprivation patterns were broadly similar. Interpretation Recorded remission in multimorbidity is highly heterogeneous and often rare. Variation between conditions and low rates of sustained remission likely reflect coding practices and clinical recording behaviours. Standardised remission definitions and consistent Systematized Nomenclature of Medicine (SNOMED) coding could improve data quality and support more reliable research on remission and disease trajectories.
Background There are increasing numbers of cancer survivors who have finished their primary treatment, but whose quality of life remains consistently poor over years. There is limited evidence for pragmatic, brief interventions to support cancer survivors in primary care, where most patients are managed. Objective To develop, trial and assess the effectiveness and cost-effectiveness of a digital intervention to support cancer survivors (named ‘Renewed’) designed to require minimal health service resources. Design Qualitative development of the intervention, then open randomised controlled trial, with a process analysis and health economic analysis. Setting United Kingdom primary care Interventions: Development of the intervention We systematically reviewed the relevant qualitative and quantitative literature to inform initial intervention planning, intervention content and design features of a digital intervention. This was followed by iterative development and optimisation of intervention content and the human support component – in qualitative studies of the views of cancer survivor, and of National Health Service, volunteer and charity workers. Main trial: Participants People who had finished primary treatment for colorectal, breast or prostate cancer with lower quality of life (European Organization for Research and Treatment of Cancer QLQ-C30 score < 85) within the last 10 years. Participants were randomised to one of three groups: (1) ‘generic’ advice: detailed digital National Health Service support for healthier living (‘Living Well’), (2) a bespoke digital intervention (‘Renewed’) addressing symptom management, physical activity, diet, weight, distress and/or fear of recurrence, or (3) ‘Renewed’ plus support (additional brief support by e-mail, telephone, or face to face) Main outcome measures Primary outcome: European Organization for Research and Treatment of Cancer QLQ-C30 (overall score). Secondary outcomes: subscales of European Organization for Research and Treatment of Cancer QLQ-C30 (global self-rated health; functional subscales; symptom subscales), EuroQol-5 Dimensions, five-level version, psychological measures and costs. Results At the primary time point of 6 months, there were clinically important improvements in European Organization for Research and Treatment of Cancer QLQ-C30 score contrary to the expected trajectory of quality of life in this population, but with no evidence of differences between groups. By 12 months, the Renewed plus support group had continued to improve and was better than generic advice (1.42, 95% confidence intervals 0.33 to 2.51), with the largest differences in the prostate cancer subgroup. 13 of the 14 subscales also improved compared to generic advice, statistically significant for self-rated global health (Renewed: 3.06, 1.39 to 4.74; Renewed plus support: 2.78, 1.08 to 4.48), dyspnoea, constipation and enablement. For Renewed plus support, there were also statistically significant differences for physical, cognitive and emotional functioning and fatigue. Renewed and Renewed plus support were dominant given improved effectiveness combined with and lower mean primary care National Health Service costs per patient (respectively −£141, −153 to −128; −£77, −90 to −65). Limitations Of those sent invitation letters, 14% (7883/59,295) were assessed for eligibility and 35% (2732/7883) of those assessed were eligible and agreed to participate – which is normal with the ‘cold calling’ method of invitation. The digital intervention would not suit people who find technology or the internet difficult to access, but only 25% (2649/10,697) of those who gave reasons for declining did so due to lack of internet access. The extensive generic advice available to participants in the National Health Service limited the ability to assess the specific benefits of Renewed in the short term, but nevertheless longer-term benefit and lower National Health Service costs are likely to be achieved with the bespoke intervention. Conclusions Cancer survivors with lower quality of life given detailed generic online support improve significantly. Providing robustly developed, low-cost, bespoke digital support can provide further modest long-term improvements in enablement, symptom management and self-rated global health, with substantially lower National Health Service costs. Future work The cost-effectiveness and benefits for symptom management on self-rated health suggest a more widespread implementation study should be undertaken. Trial registration This trial is registered as Current Controlled Trials ISRCTN 96374224. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Programme Grants for Applied Research programme (NIHR award ref: RP-PG-0514-20001) and is published in full in Programme Grants for Applied Research; Vol. 14, No. 4. See the NIHR Funding and Awards website for further award information. Plain language summary We aimed to make and assess a website for use in general practices to support people who have poor quality of life after their initial cancer treatment. We made our website, called ‘Renewed’, based on the few studies about websites or apps. We tested ‘Renewed’ with people who had finished their initial treatment, National Health Service staff and others, and used their feedback to improve it. Then we asked others to join a study to see how well ‘Renewed’ works. Each person invited to join the study had finished initial treatment for bowel, breast or prostate cancer but had poor quality of life. We placed them at random (by chance) into one of three groups: given general advice from the NHS website for more healthy living (‘Living Well’) given ‘Renewed’, with help designed for cancer survivors in managing symptoms, exercise, diet, weight, distress, and fear of cancer coming back given ‘Renewed’, plus brief support by e-mail, telephone or face to face. After 6 months, all groups reported better quality of life. After 12 months, the Renewed plus support group carried on improving and was a little better than general advice for quality of life. At this time both the Renewed groups had improved in their rating of their health, shortness of breath, constipation and feeling more able to manage their problems. People in the Renewed plus support group also had improved physical and emotional functioning and less fatigue. Both Renewed and Renewed plus support not only had improved outcomes but also lower costs for the NHS. This study suggests that the online support provided by the Renewed website can help improve the quality of life of people who have finished initial cancer treatment, with both better outcomes and lower costs for the National Health Service. Scientific summary Background There are increasing numbers of cancer survivors who have finished their primary treatment, but quality of life remains consistently poor over years for many patients. There is limited evidence for pragmatic, brief interventions to support cancer survivors in primary care, where most patients are managed. Objective To develop, trial and assess the effectiveness and cost-effectiveness of a digital intervention to support cancer survivors (‘Renewed’) designed to require minimal health service resources. Methods Intervention development Collating the evidence Rapid review of web-based interventions designed to improve quality of life in adults who have completed primary treatment for breast, prostate and colorectal cancer. A range of study designs were included, and information about intervention characteristics, experiences and outcomes was extracted. The data were analysed using thematic analysis. Rapid scoping review of barriers and facilitators. A search identified studies during the past 20 years and further studies were identified by experts in the team and examination of reference lists. Development of Guiding Principles The rapid scoping review was used to identify key context-specific behavioural issues, and key intervention features were developed to meet each design objective. These Guiding Principles were improved in consultation with the development team and an expert stakeholder panel. Behavioural analysis A behavioural analysis table documented likely barriers for target behaviours, and for each barrier, interventions were described and coded according to three theoretical frameworks [Behaviour Change Techniques Taxonomy (BCTv1); Behaviour Change Wheel (BCW); Normalisation Process Theory (NPT)]. Logic model Using Medical Research Council guidance, the behavioural analysis was used to develop the logic model – describing the problem, intervention targets/ingredients to resolve the problem, mechanisms of action, and outcomes. Qualitative research: think-aloud interviews with cancer survivors Think-aloud interviews were conducted with 32 cancer survivors. Positive and negative comments were then collated, modifications made, and further rounds of interviews conducted with the modified versions of the prototype until no important further changes were required. Qualitative research: focus groups with National Health Service and cancer charity staff and volunteers Seven focus groups were carried out with staff from five general practitioner practices, staff and volunteers from two cancer charities, addressing support and training materials, and the integration of the intervention in everyday practice. Modifications were made and further rounds of focus groups were organised until no further improvements were identified. Main trial Participants For the main trial, people who had finished primary treatment for colorectal, breast or prostate cancer up to 10 years previously, reporting suboptimal quality of life [European Organization for Research and Treatment of Cancer QLQ-C30 (EORTCQLQ-C30) score < 85]. Interventions Participants were randomised to one of three groups: (1) ‘Generic’ advice: detailed digital NHS support for healthier living (‘Living Well’), (2) a bespoke digital intervention (‘Renewed’) addressing symptom management, physical activity, diet, weight loss, distress management and/or fear of recurrence, or (3) ‘Renewed’ with additional brief support by e-mail, telephone, and face to face. Automated randomisation with stratification was implemented using LifeGuide software (www.lifeguideonline.org) with a 1 : 1 allocation ratio stratified by: cancer type: breast/prostate/colorectal and EORTCQLQ-C30 score (64 or less/65 or more). Main outcome measures Primary outcome: EORTCQLQ-C30 (overall score). Secondary outcomes: subscales of EORTCQLQ-C30 (global self-rated health; functional subscales; symptom subscales), psychological measures, quality of life measured by EuroQol-5 Dimensions, five-level version (EQ-5D-5L) and costs. Main statistical analysis All participant data were analysed on an intention-to-treat basis, that is, as randomised. The primary analysis used imputed data, employing a chained equation multiple imputation model for missing data. A complete-case analysis was a sensitivity analysis. Generalised linear mixed regression models were used for continuous variables, controlling for baseline and stratification variables, including a random effect for practice. Pre-planned subgroup analyses were set out in the statistical analysis plan for age, gender and comorbidities. We also performed post hoc within-group analyses documenting the changes from baseline. Health economic analysis Cost per quality-adjusted life-year (QALY) was estimated. The base case took an NHS perspective using primary care consultation and medication costs, but with sensitivity analyses including secondary care costs. Resource use data were collected by a medical record review in primary care. Unit costs of primary care consultation, community services, outpatient visits and accident and emergency attendances were costed based on the Personal Social Services Research Unit. National reference costs were used to cost hospital stay based on corresponding diagnostic categories. Medications were priced based on the British National Formulary. All costs were based on 2019 prices. QALYs were estimated using the EQ-5D-5L and were based on the recommended national tariff. Process analyses Qualitative analysis Forty-two patients were interviewed to explore their experiences of using the Renewed intervention and to understand the potential barriers and facilitators to using Renewed. Quantitative analysis Patients were included if they completed the 12-month follow-up measures and were classified according to how much of the intervention was accessed, and this was then related to the impact on outcomes. Results Intervention development Rapid review The database search identified 6327 papers, and 16 relevant papers relating to 9 interventions fulfilled eligibility criteria. Identified themes addressed aspects of intervention design (participant factors, characteristics of the online intervention, techniques used to change behaviour and preferred features of web-based interventions), including issues of uptake, adherence and attrition, engagement, feasibility, efficacy, positive behaviour change and acceptability of the interventions. Scoping review Facilitators and barriers were grouped according to key characteristics, including factors influencing participation; information included in the intervention; motivation/self-esteem/self-efficacy; self management/monitoring; emotions/mood; social support; intervention design/content; technical aspects and various practical issues. Guiding principles Target users did not see themselves as having health needs, so the content promoted well-being, rather than illness management. Cancer survivors felt that their usual behaviour in part caused their cancer, so suggestions for behavioural change did not stigmatise users’ current behaviour. Target users form a heterogeneous group; hence the intervention provided tailored information to each user, based on answers to baseline questions. Participants wanted brief accessible information; hence short sessions on specific topics were provided and the intervention targeted behaviours which had the potential to improve multiple symptoms. Behavioural analysis Three target behaviours were identified (physical activity, diet and intervention engagement) and specific intervention components included to minimise barriers to each, mapped to elements of the BCTv1, BCW and NPT theoretical frameworks. Qualitative research: think-aloud interview with cancer survivors Participants found the intervention to be generally easy to navigate and the content being relevant and useful. Negative comments described barriers to engagement which resulted in modifications to the prototype; for example some were worried about overdoing physical activity, so changes emphasised that increasing physical activity should be done gradually. Qualitative research: focus groups with National Health Service and cancer charity staff and volunteers Several concerns were raised which led to further modifications; for example some questioned the use of the Congratulate, Ask, Reassure, Encourage approach, so additional information about how to provide support with patients who had not achieved their goals was added. Main trial At the primary time point of 6 months, there were clinically important improvements in EORTCQLQ-C30 score contrary to the expected trajectory of quality of life in this population, but with no evidence of differences between groups. By 12 months, the Renewed plus support group continued to improve and was better than generic advice (1.42, 95% confidence intervals 0.33 to 2.51), with the largest differences in the prostate cancer subgroup. Thirteen of the 14 functional and symptom subscales also improved compared to generic advice, statistically significant for self-rated global health (Renewed: 3.06, 1.39 to 4.74; Renewed plus support: 2.78, 1.08 to 4.48), dyspnoea, constipation and enablement. For Renewed plus support, there were also significant differences for physical, cognitive and emotional functioning and fatigue. Renewed and Renewed plus support demonstrated little or no change in QALY estimates using the EQ-5D-5L, but were dominant – with both a range of better health outcomes while incurring lower mean NHS primary care costs per patient (respectively −£141, −153 to −128; −£77, −90 to −65). Process analyses Qualitative process study The results showed that even limited usage of Renewed Online may provide enough information to motivate behaviour change in those with less need for more tailored support. Novel information may need to be presented earlier in the intervention to motivate further engagement with Renewed in those who need more detailed and tailored information to make behaviour changes. Quantitative process analysis The majority of patients accessed the Core content of Renewed and completed the Core content. Approximately half of participants continued to use Renewed past the Homepage to access the Optional content. Those who used Optional content had higher quality of life (QoL) scores compared to those who only accessed the Core content. Conclusions Cancer survivors with lower quality of life given detailed generic online support improve significantly. Providing robustly developed, low cost, bespoke digital support can provide further modest long-term improvements in enablement, symptom management, and self-rated global health, with substantially lower primary care NHS costs. Implications for health care The current study provides reasonable evidence that a novel bespoke intervention to support cancer survivors could be integrated into current practice since there are both some longer-term benefits combined with lower costs to the NHS. However, all trial participants by definition had to engage with the trial and trial procedures, and so may not represent the wider patient population, and all were followed up with questionnaires and with phone calls where questionnaires were not returned. This could be mimicked in routine practice by brief follow-up contacts, which could be assessed in a larger implementation study. Recommendations for research The cost-effectiveness and benefits for symptom management self-rated health for both Renewed interventions suggest that an implementation study is the next step, including further assessment of the impact in different socio-economic groups and cancer types. To consider using and/or developing more sensitive primary outcome measures among cancer survivors, particularly for briefer, low resource interventions – since the overall EORTCQLQ-C30 summary score is not sensitive to change, in contrast to both symptom subscales and self-rating of health. To develop QALY measures that capture the benefit to QoL for low intensity, low resource interventions among cancer survivors given that neither the EQ-5D-5L or the EORTC-8d reflected important changes in patients’ self-rating of health. Further work is indicated to explore why people with some cancers may not be as willing to use the intervention as others and exploration of the key barriers for those from ethnic minority backgrounds to take part. Trial registration This trial is registered as Current Controlled Trials ISRCTN 96374224. Funding This award was funded by the National Institute for Health and Care Research (NIHR) Programme Grants for Applied Research programme (NIHR award ref: RP-PG-0514-20001) and is published in full in Programme Grants for Applied Research; Vol. 14, No. 4. See the NIHR Funding and Awards website for further award information.
Abstract Background Acne vulgaris is common and has a substantial impact on patients’ quality of life. Low adherence to acne treatments is a barrier to successful management. Objectives To examine the prevalence of adherence to oral and topical treatments for acne, factors associated with adherence and reasons for nonadherence. Methods We included primary quantitative studies that investigated acne-related experiences and behaviours, including predictors, determinants and outcomes associated with treatment adherence. We searched the following databases from inception until 24 March 2025, with no language restrictions: MEDLINE, PubMed, Embase, PsycINFO and CINAHL. Quality was appraised using the Mixed Methods Appraisal Tool. We present the findings related to observational studies, analysed using narrative synthesis. Results Twenty-six eligible papers reported studies in the Americas, Europe and Asia. Thirteen papers reported quantitative descriptive studies (8111 survey participants plus 2 studies that reported data from electronic health records) and 13 papers (12 studies, 37 884 participants) reported other designs such as analytic cross-sectional or cohort studies. Methods for evaluating adherence varied: 21 studies used self-report with differing questionnaire designs, 3 used prescription data to evaluate medication possession ratio, 3 assessed drug refills, 1 carried out database drug survival analysis and 1 used pill count or tube weighing. Four studies used more than one method. The prevalence of adherence estimates varied from 6% to 84%, with larger studies estimating 50–65% adherence. Adherence was lower among younger people, but there was inconsistent evidence for differences between men and women, or between topical and oral treatments. Reasons for nonadherence included cost, side effects, perceived treatment ineffectiveness or symptom resolution. Conclusions Improving treatment adherence in acne remains a priority, particularly for younger people. Interventions addressing the management of side effects and time to effectiveness of treatments may be beneficial.
BACKGROUND:Previous longitudinal studies have linked multimorbidity to loneliness (feeling alienated) and social isolation (having reduced social contact). However, the nature of these associations over time is unclear. OBJECTIVE:To examine bidirectional associations of multimorbidity with loneliness and social isolation over a 14-year follow-up in a nationally representative cohort of adults aged ≥ 50 years. METHODS:This retrospective cohort study used seven waves of data (collected between 2004/2005 and 2018/2019) from adults in the English Longitudinal Study of Ageing. Multimorbidity was defined as the presence of ≥2 long-term conditions. Loneliness was measured using the 3-item University of California Los Angeles (UCLA) scale. Social isolation was derived based on cohabitation status, frequency of contact with children, relatives, and friends, and social organisation membership. We used Cox proportional hazards models adjusted for social isolation or loneliness, demographic and health behaviour variables. RESULTS:The cohort consisted of 6031 adults with baseline and follow-up data on loneliness, social isolation, multimorbidity, and other covariates. Loneliness was associated with increased risk of incident multimorbidity [aHR (95 % CI): 1.38 (1.15-1.65)], whereas social isolation was not [aHR (95 % CI): 0.97 (0.81-1.16)]. Multimorbidity was associated with increased risk of incident loneliness [aHR (95 % CI): 1.55 (1.30-1.84)], but not significantly associated with subsequent risk of incident social isolation [aHR (95 % CI): 1.09 (0.92-1.28)]. CONCLUSIONS:An independent bidirectional association exists between loneliness and multimorbidity. Interventions targeting loneliness may prevent or delay multimorbidity and also improve wellbeing for people with multimorbidity.