Assessing awareness of blood cancer symptoms and barriers to symptomatic presentation: measure development and results from a population survey in the UK.

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.

Healthcare Professional and Patient Perceptions of Changes in Colorectal Cancer Care Delivery During the COVID-19 Pandemic and Impact on Health Inequalities.

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.

Examining the application of behaviour change theories in the context of infectious disease outbreaks and emergency response: a review of reviews.

BACKGROUND: Behavioural science can play a critical role in combatting the effects of an infectious disease outbreak or public health emergency, such as the COVID-19 pandemic. The current paper presents a synthesis of review literature discussing the application of behaviour change theories within an infectious disease and emergency response context, with a view to informing infectious disease modelling, research and public health practice. METHODS: A scoping review procedure was adopted for the searches. Searches were run on PubMed, PsychInfo and Medline with search terms covering four major categories: behaviour, emergency response (e.g., infectious disease, preparedness, mass emergency), theoretical models, and reviews. Three further top-up reviews was also conducted using Google Scholar. Papers were included if they presented a review of theoretical models as applied to understanding preventative health behaviours in the context of emergency preparedness and response, and/or infectious disease outbreaks. RESULTS: Thirteen papers were included in the final synthesis. Across the reviews, several theories of behaviour change were identified as more commonly cited within this context, specifically, Health Belief Model, Theory of Planned Behaviour, and Protection Motivation Theory, with support (although not universal) for their effectiveness in this context. Furthermore, the application of these theories in previous primary research within this context was found to be patchy, and so further work is required to systematically incorporate and test behaviour change models within public health emergency research and interventions. CONCLUSION: Overall, this review identifies a range of more commonly applied theories with broad support for their use within an infectious disease and emergency response context. The Discussion section details several key recommendations to help researchers, practitioners, and infectious disease modellers to incorporate these theories into their work. Specifically, researchers and practitioners should base future research and practice on a systematic application of theories, beginning with those reported herein. Furthermore, infectious disease modellers should consult the theories reported herein to ensure that the full range of relevant constructs (cognitive, emotional and social) are incorporated into their models. In all cases, consultation with behavioural scientists throughout these processes is strongly recommended to ensure the appropriate application of theory.

Implementing and evaluating resources to support good maternity care for parents with learning disabilities: A qualitative feasibility study in England.

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 post-natal 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].

How is diagnostic uncertainty communicated and managed in real world primary care settings?

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.

Socioeconomic differences in help seeking for colorectal cancer symptoms during COVID-19: a UK-wide qualitative interview study.

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.

Views and experiences of people with acne vulgaris and healthcare professionals about treatments: systematic review and thematic synthesis of qualitative research.

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.

Supporting Self-management Among Young People With Acne Vulgaris Through a Web-Based Behavioral Intervention: Development and Feasibility Randomized Controlled Trial.

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.