Dr Athena Ip

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

Background: With the right support, people with learning disabilities can be ‘good enough’ parents (Coren, Thomae, & Hutchfield, 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, Llewellyn, & Matthews, 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 ante-natal 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. Methods: A 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 via 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. Findings: Interviews 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 focused on 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 the tool was accessible and meaningful to people with learning disabilities. Conclusions: We have used a process of inclusive research to modify a self-efficacy tool for parents-to-be with learning disabilities which is freely available on the TOPSE website (https://www.topse.org.uk/site/). 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.

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 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 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.

Background COVID-19 has led to rapid changes in healthcare delivery, raising concern that these changes may exacerbate existing inequalities in patient outcomes. Aim To understand how patients’ help-seeking experiences in primary care for colorectal cancer symptoms during COVID-19 were affected by their socioeconomic status (SES). Design and setting Qualitative semi-structured interviews with males and females across the UK, recruited using purposive sampling by SES. Method Interviews were carried out with 39 participants (20 higher SES; 19 lower SES) who contacted primary care about possible symptoms of colorectal cancer during COVID-19. Data were analysed using framework analysis followed by comparative thematic analysis to explore differences between groups. Results Three themes were identified with differences between SES groups: 1) how people decided to seek medical help through appraisal of symptoms; 2) how people navigated services; and 3) impact of COVID-19 on how patients interacted with healthcare professionals. The lower SES group expressed uncertainty appraising symptoms and navigating services (in terms of new processes resulting from COVID-19 and worries about infection). There was also potential for increased disparity in diagnosis and management, with other methods of getting in touch (for example, email or 111) taken up more readily by higher SES patients. Conclusion The findings suggest that COVID-19 exacerbated disparities between higher and lower SES participants. This study raises awareness around challenges in help seeking in the context of the pandemic, which are likely to persist (post-COVID-19) as healthcare systems settle on new models of care (for example, digital). Recommendations are provided to reduce inequalities of care.

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.

Background Acne vulgaris is a common skin condition affecting approximately 95% of adolescents to some extent. First‐line treatments are topical preparations but nonadherence is common. A substantial proportion of patients take long courses of oral antibiotics, associated with antibiotic resistance. Objectives This study aimed to explore young people's views and experiences of acne and its treatments. Methods We report a secondary thematic analysis of interview data collected by researchers in the Health Experiences Research Group (HERG), University of Oxford. A total of 25 transcripts from young people aged 13–24 years with acne were included. Results Acne is often perceived as a short‐term self‐limiting condition of adolescence and this appears to have implications for seeking treatment or advice. Participants widely perceived topical treatments as being ineffective, which seemed related to unrealistic expectations around speed of onset of action. Many participants felt they had tried all available topical treatments, although were unsure what was in them or unaware of differences between cosmetic and pharmaceutical treatments. They had concerns around how to use topicals ‘properly’ and how to avoid side‐effects. They were also concerned about the side‐effects or necessity of oral treatments, although few seemed aware of antibiotic resistance. Conclusions People with acne need support to manage their condition effectively, particularly a better understanding of different topicals, how to use them and how to avoid side‐effects. Unrealistic expectations about the onset of action of treatments appears to be a common cause of frustration and nonadherence. Directing people towards accessible evidence‐based information is crucial. What's already known about this topic? There is a common perception that acne is a short‐term condition that will resolve without treatment. Previous research has shown that nonadherence to topical treatments is common and that oral antibiotics are the most commonly prescribed treatment for acne in the U.K. Further research is needed to understand how young people perceive acne treatments and the implications of this for treatment adherence and self‐management. What does this study add? People often said they had tried all available topical preparations for acne, but seemed confused between cosmetic and pharmaceutical treatments. People seemed unsure how to use topical treatments ‘properly’ or how to avoid side‐effects. This was rarely discussed with health professionals. People's perception of acne as a short‐term condition appeared to influence their expectations around onset of action of treatment and their views about its effectiveness and necessity. What are the clinical implications of the work? The perception of acne as a short‐term condition has implications for self‐management and motivation to seek and adhere to treatments. Providing advice about onset of action of treatments and how to prevent side‐effects is crucial, including directing people towards accessible, written, evidence‐based information. People's confusion about the different topical treatments available may be alleviated by such information, or by encouraging photos or other recordings of treatments tried and for how long. Linked Comment: Prior. Br J Dermatol 2020; 183:208–209.