BACKGROUND:The UK National Institute for Health and Care (NICE) recommends that GPs inform patients referred onto the urgent suspected cancer (USC) pathway about what to expect from the service. However, there is a lack of evidence on patient experience and information needs at the point of referral. It is a challenge for GPs to communicate the reasons for referral and provide reassurance. AIM:To examine how GPs communicate a potential cancer diagnosis and USC referral in practice. DESIGN & SETTING:This is a secondary analysis of a dataset of 23 audio-recorded GP-patient consultations, selected from a larger dataset of 200 consultations collected in Surrey and London, UK in 2017-2018. The consultations were selected based on inclusion criteria related to cancer discussions. METHOD:This is a qualitative analysis of video-recordings of face-to-face patient consultations. RESULTS:We found that most GPs informed patients that they might have cancer and engaged in reassurance using personalised risk statements. Some GPs avoided all mention of cancer, using symptom-led language instead. GPs focused on communicating practical rather than support-based information. Although most GPs informed patients that they would be seen by a specialist within 2 weeks, few discussed patients' support needs during the referral period. CONCLUSION:Clear communication about cancer in primary care is promoted in UK policy, and has an important role driving patient investigations attendance. The study highlights the need for further research on communication practices around cancer referral to improve patient understanding and experience. Our recommendations for enhanced communication may improve patient outcomes by optimising routes to diagnosis via primary care.

BackgroundWith the right support, people with learning disabilities can be 'good enough' parents (Coren et al., 2011; Murphy & Feldman, 2002). Parenting programmes exist to support parents and are made accessible for people with learning disabilities who are expecting a baby, but evaluation of the benefit of these interventions is poor due to a lack of accessible outcome measures (May & Harris, 2020; Wade et al., 2008). The Tool to Measure Parenting Self-Efficacy in the antenatal period (TOPSE- ante-natal) measures the impact of parenting interventions on an individual's self-efficacy during the antenatal period. This study aimed to modify the TOPSE ante-natal tool through a process of inclusive research, to support a consistent approach to evaluating parenting interventions from the perspective of parents-to-be with learning disabilities.MethodsA two-phase study using interviews and discussion groups was conducted in a process of inclusive research to modify the TOPSE ante-natal tool. Phase one involved conducting eight cognitive interviews (interviews to understand how individuals process and recall information) with parents with learning disabilities. These were conducted remotely via Microsoft Teams, transcribed verbatim and analysed using content analysis (Krippendorff, 2013). Participants were recruited using snowballing techniques through the advisory groups' networks. Phase two included three discussion groups with study collaborators and advisors (n = 14) to assess the accessibility and acceptability of adaptations of the tool, each making further refinements for consideration.FindingsInterviews and discussion groups highlighted how parents-to-be with learning disabilities experienced some of the original TOPSE-ante-natal negative statements, including negative points on a Likert scale, difficult to comprehend. Figurative statements and unfamiliar words also caused confusion, and statements focussed on the pressures of parenting were experienced as confrontational by people with learning disabilities. Statements were removed or replaced and agreed upon in discussion groups to ensure that the tool was accessible and meaningful to people with learning disabilities.ConclusionsWe have used a process of inclusive research to modify a self-efficacy tool for parents-to-be with learning disabilities that is freely available on the TOPSE website (). The next steps are for this tool to be used and validated in future studies evaluating parenting interventions for people with learning disabilities. This will inform a knowledge base of what interventions should be used by practitioners who are supporting people with learning disabilities to prepare for parenthood. People with learning disabilities may need support to be good parents.There are parenting programmes to support people with learning disabilities who are expecting a baby, but it is difficult to find out how helpful they are, as questionnaires to measure this are not accessible for people with learning disabilities.This article describes how we worked with parents with learning disabilities and advisors (advocates, researchers and health professionals) to make an accessible and meaningful version of a questionnaire.This questionnaire can be used to find out if and how parenting programmes help people with learning disabilities feel more confident in how they will parent their babies.

Background Managing diagnostic uncertainty is a major challenge in primary care due to factors such as the absence of definitive tests, variable symptom presentations and disease evolution. Maintaining patient trust during a period of investigative uncertainty, whilst minimising scope for diagnostic error is a challenge. Mismanagement can lead to diagnostic errors, treatment delays, and suboptimal patient outcomes. Objective Our aim was to explore how UK primary care physicians (GPs) address and communicate diagnostic uncertainty in practice. Design This qualitative study used video and audio-recordings. Verbatim transcripts were coded with a modified, validated tool to capture GPs’ actions and communication in primary care consultations that included diagnostic uncertainty. The tool includes items relating to advice regarding new symptoms or symptom deterioration (sometimes called ‘safety netting’). Video data was analysed to identify GP and patient body postures during and after the delivery of the management plan. Participants All patient participants had a consultation with a GP, were over the age of 50 and had (1) at least one new presenting problem or (2) one persistent problem that was undiagnosed. Approach Data collection occurred in GP-patient consultations during 2017-2018 across 7 practices in UK during 2017-2018. Key Results GPs used various management strategies to address diagnostic uncertainty, including (1) symptom monitoring without treatment, (2) prescribed treatment with symptom monitoring, and (3) addressing risks that could arise from administrative tasks. GPs did not make management plans for potential treatment side effects. Specificity of uncertainty management plans varied among GPs, with only some offering detailed actions and timescales. The transfer of responsibility for the management plan to patients was usually delivered rather than negotiated, with most patients confirming acceptance before concluding the discussion. Conclusions We offer guidance to healthcare professionals, improving awareness of using and communicating management plans for diagnostic uncertainty.

Background Low levels of cancer awareness may contribute to delays in seeking medical help and subsequent delays in diagnosis. For blood cancer this may be a particularly prominent problem due to the high prevalence of undifferentiated symptoms such as bodily pain, weakness, nausea and weight loss, resulting in low symptom awareness. The delay is exacerbated by the dismissal of similar symptoms which are often interpreted as mild disease, resulting in multiple consultations prior to diagnosis. This study describes the development of a Cancer Awareness Measure for Blood Cancer (Blood CAM) and presents results from a population-representative survey using the measure. Methods A rapid systematic review identified constructs relevant to blood cancer. Items were taken from previous awareness measures and other literature and reviewed by expert groups including health care professionals and patients. Cognitive interviews were conducted with ten members of the public to check comprehension and clarity. A total sample of 434 participants completed the survey at Time 1 and n = 302 at Time 2 (two weeks later). Results Internal reliability was high across the different constructs included in the questionnaire (> 0.70) and test-retest reliability was moderate to good (0.49–0.79). The most commonly recognised blood cancer symptoms were unexplained weight loss (68.9%) and unexplained bleeding (64.9%) and the least commonly recognised symptoms were night sweats (31.3%) breathlessness and rash/itchy skin (both 44%). In terms of symptom experience, fatigue was the most commonly reported symptom (26.7%) followed by night sweats (25.4%). Exploratory factor analysis of barriers to presenting at primary care revealed three distinct categories of barriers; emotional, external/practical and service/healthcare professional related. Service and emotional barriers were most common. Conclusions We developed a valid and reliable tool to assess blood cancer awareness and showed variable awareness of blood cancer symptoms which can help target public health campaigns. We also incorporated additional measures (e.g. confidence to re-consult, ability to understand symptoms) that could be used to tailor public messaging for blood cancer and for other harder to suspect and diagnose cancers.

Background The COVID-19 pandemic changed the way in which people were diagnosed and treated for cancer. We explored healthcare professional and patient perceptions of the main changes to colorectal cancer delivery during the COVID-19 pandemic and how they impacted on socioeconomic inequalities in care. Methods In 2020, using a qualitative approach, we interviewed patients (n = 15) who accessed primary care with colorectal cancer symptoms and were referred for further investigations. In 2021, we interviewed a wide range of healthcare professionals (n = 30) across the cancer care pathway and gathered national and local documents/guidelines regarding changes in colorectal cancer care. Results Changes with the potential to exacerbate inequalities in care, included: the move to remote consultations; changes in symptomatic triage, new COVID testing procedures/ways to access healthcare, changes in visitor policies and treatment (e.g., shorter course radiotherapy). Changes that improved patient access/convenience or the diagnostic process have the potential to reduce inequalities in care. Discussion Changes in healthcare delivery during the COVID-19 pandemic have the ongoing potential to exacerbate existing health inequalities due to changes in how patients are triaged, changes to diagnostic and disease management processes, reduced social support available to patients and potential over-reliance on digital first approaches. We provide several recommendations to help mitigate these harms, whilst harnessing the gains.

COVID-19 has resulted in an unprecedented expansion of virtual consultations in primary and community care services.[1][1] Although virtual consultations have been available for a long time, they were not widely adopted before COVID-19.[2][2] There has now been a rapid deployment of virtual

BACKGROUND:Acne is a common skin condition that is most prevalent in young people. It can have a substantial impact on the quality of life, which can be minimized with the appropriate use of topical treatments. Nonadherence to topical treatments for acne is common and often leads to treatment failure.OBJECTIVE:The aim of this study is to develop a web-based behavioral intervention to support the self-management of acne and to assess the feasibility of recruitment, retention, and engagement of users with the intervention.METHODS:The intervention was developed iteratively using the LifeGuide software and following the person-based approach for intervention development. The target behavior was appropriate use of topical treatments. Barriers and facilitators identified from the qualitative research and evidence from the wider literature were used to identify techniques to improve and promote their use. Young people with acne aged 14-25 years who had received treatment for acne in the past 6 months were invited to participate through mail-out from primary care practices in the South of England in a parallel, unblinded randomized trial. Participants were automatically randomized using a computer-generated algorithm to usual care or to usual care plus access to the web-based intervention. Usage data was collected, and a series of questionnaires, including the primary outcome measure for skin-specific quality of life (Skindex-16), were collected at baseline and at the 4- and 6-week follow-ups.RESULTS:A total of 1193 participants were invited, and 53 young people with acne were randomized to usual care (27/53, 51%) or usual care plus intervention (26/53, 49%). The response rate for the primary outcome measure (Skindex-16) was 87% at 4 weeks, 6 weeks, and at both time points. The estimate of mean scores between groups (with 95% CI) using linear regression showed a trend in the direction of benefit for the web-based intervention group in the primary outcome measure (Skindex-16) and secondary measures (Patient Health Questionnaire-4 and the Problematic Experiences of Therapy Scale). Intervention usage data showed high uptake of the core module in the usual care plus web-based intervention group, with 88% (23/26) of participants completing the module. Uptake of the optional modules was low, with less than half visiting each (myth-busting quiz: 27%; living with spots or acne: 42%; oral antibiotics: 19%; what are spots or acne: 27%; other treatments: 27%; talking to your general practitioner: 12%).CONCLUSIONS:This study demonstrated the feasibility of delivering a trial of a web-based intervention to support self-management in young people with acne. Additional work is needed before a full definitive trial, including enhancing engagement with the intervention, recruitment, and follow-up rates.TRIAL REGISTRATION:ISRCTN 78626638; https://tinyurl.com/n4wackrw.

Objectives The objective of this study was to systematically review and synthesise qualitative papers exploring views and experiences of acne and its treatments among people with acne, their carers and healthcare professionals (HCPs). Design Systematic review and synthesis of qualitative papers. Methods Papers were identified through Medline, EMBASE, PubMed, PsychINFO and CINAHL on 05 November 2019, forward and backward citation searching, Google Scholar and contacting authors. Inclusion criteria were studies reporting qualitative data and analysis, studies carried out among people with acne, their carers or HCPs and studies comprising different skin conditions, including acne. The title and abstracts of papers were independently screened by three researchers. Appraisal was carried out using the adapted Critical Appraisal Skills Programme tool. Thematic synthesis was used to synthesise findings. Results A total of 20 papers were included from six countries. Papers explored; experiences living with acne, psychosocial impact of acne, views on causation of acne, perceptions of acne treatments, ambivalence and ambiguity in young people’s experience of acne and HCPs’ attitudes towards acne management. Findings suggest that people often viewed acne as short-term and that this had implications for acne management, particularly long-term treatment adherence. People often felt that the substantial impact of acne was not recognised by others, or that their condition was ‘trivialised’ by HCPs. The sense of a lack of control over acne and control over treatment was linked to both psychological impact and treatment adherence. Concerns and uncertainty over acne treatments were influenced by variable advice and information from others. Conclusions People need support with understanding the long-term management of acne, building control over acne and its treatments, acknowledging the impact and appropriate information to reduce the barriers to effective treatment use. PROSPERO registration number CRD42016050525.

Problem: Parents with learning disabilities are often disadvantaged and their needs not well understood in maternity services. Background: Despite a global vision to improve maternity care, current evidence confirms poor pre- and postnatal care for parents with learning disabilities and their families. Midwives have expressed a need for support in the delivery of good care to this population of parents. Aim: To test the feasibility of implementing and evaluating two evidence -based and values -based resources - the Together Toolkit and Maternity Passport - to support good maternity care for people with learning disabilities. Methods: A qualitative feasibility study employing semi -structured interviews with 17 midwives and 6 parents who had used the resources in practice in four NHS Trusts in the south of England. Findings: Midwives and parents described how the resources positively impacted maternity care by enabling midwives, connecting networks and empowering parents. Factors affecting effective implementation of the resources were reported at an individual and setting level. Discussion: Staff training to raise awareness and confidence in supporting parents with learning disabilities, and improved systems for recording parent 's individual needs are required to enable the delivery of personalised care. Conclusion: Reasonable adjustments need to be prioritised to facilitate implementation of resources to support personalised maternity care and to address inequity for parents with learning disabilities. Aspirations for equity suggested commitment from midwives to challenge and overcome barriers to implementation. Recommendations were made to improve the resources and their implementation. These resources are free and accessible for use [www.surrey.ac.uk/togetherproject].