Katriina L. Whitaker

Background: In England, people from marginalised groups are more likely to be diagnosed with, and treated for, late-stage breast cancer. Differences in routes to diagnosis, time to diagnosis and time to treatment may be contributing factors. Methods: Data from the Clinical Practice Research Datalink and the Cancer Registration Tumour and Treatment datasets were assessed for 86,564 adults diagnosed between 01 January 2009 and 31 December 2018. Associations between patient characteristics and route to diagnosis, time to diagnosis and time to treatment were examined using logistic regression and accelerated failure time models. Results: People of Asian (aOR: 0.87, CI 0.79, 0.97), Black (aOR: 0.71, CI 0.62, 0.82), or Mixed ethnicity (aOR: 0.67, CI 0.51, 0.88), those experiencing deprivation (aOR: 0.89, CI 0.85, 0.95), and those with severe mental illness (aOR: 0.87, CI 0.78, 0.98) were less likely to be diagnosed via screening. Conversely, these groups were more likely to be diagnosed via urgent suspected cancer referral and/or emergency presentation. Time to diagnosis was longer for people with a learning disability (aTR: 1.18, CI 1.06, 1.32), while time to treatment was longer for people with a learning disability (1.08, CI 1.03, 1.13), people with severe mental illness (aTR: 1.07, CI 1.04, 1.09) and people of Black (aTR: 1.10, CI 1.07, 1.13) or Other ethnicity (aTR: 1.06 CI 1.03, 1.10). Conclusions: This study provides insights into which patient groups experience inequalities in routes to diagnosis, time to diagnosis and time to treatment. The findings can be used to target strategies to reduce inequalities in stage at diagnosis and treatment.

Background: Language barriers in primary care contribute to health inequalities, limiting access to services and affecting patient outcomes. Professional interpreting services are emphasised in UK guidance, but evidence on how policy-makers and commissioners deliver these services is lacking. This study aimed to explore the commissioning and implementation of interpreting services in UK primary care from the perspectives of commissioners, policy-makers, interpreters, and interpreting service providers. Methods: Semi-structured interviews were conducted with 31 participants (12 national policy-makers, 6 commissioners, 7 interpreters, and 6 interpreting service providers). Thematic analysis was conducted to explore delivery and identify best practices and key challenges in delivery. Results: The study found variation in commissioning models, with some areas favouring large national providers for widened scope and cost efficiency, while others prioritised local interpreting services for higher quality. The UK was seen as world-leading in interpreting provision, however fragmentation, lack of standardisation, accountability gaps, funding constraints within a publicly-funded healthcare system, and varied interpreter competencies and renumeration led to inconsistency in delivery. The healthcare sector was reported as having lower interpreting standards compared with other UK public sectors. Technological solutions were used in delivery and offered key advantages but sometimes failed to meet patient and provider needs. Conclusion: Strengthening national regulation, funding allocation, and service integration is essential to addressing systemic issues and improving interpreting service delivery in UK primary care. Policy recommendations include promoting "what good looks like," standardising interpreter qualifications and adopting approaches tailored to local population needs.

Objective: We explored the literature on timely cancer diagnosis and its significance on psychological outcomes or quality of life in cancer patients. Design: A scoping review to map existing literature in this area, following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. Results: Six studies were identified. Four studies used cross-sectional surveys, and one each used qualitative and mixed-method designs. Quantitative evidence suggests that timely diagnosis was associated with better psychological outcomes and quality of life. Qualitative and mixed-method evidence found an incidental relationship, but it was not a focus of the studies. There were varied definitions of timely diagnosis, and a diverse range of measures were used to identify outcomes. No study satisfied all quality appraisal criteria, with key dates in the diagnostic journey being the least reported (0/6 studies). Conclusions: Preliminary evidence indicates that timely diagnosis may be associated with variations in psychological outcomes and quality of life in patients with cancer; however, methodological heterogeneity restricts the generalisability of the findings. More high-quality longitudinal quantitative and qualitative research is needed to explore the direction of the association and lived experience during the adjustment process.

Introduction: Interpreting services for patients with no/limited English proficiency are key in healthcare communication and quality of care; yet little evidence exists on interpreting service delivery. This study investigated delivery of interpreting services in UK primary care, particularly how models differ by population needs, and contextual factors impacting delivery. Methods: Four primary care sites were purposively selected to represent a range of population and practice characteristics. 24 episodes/spaces were observed and semistructured interviews were conducted with 22 frontline staff. Data were analysed using the Rapid Research and Evaluation Lab (RREAL) Rapid Assessment Procedure sheets and inductive thematic analysis. Results: General practices typically fell under three categories of interpreting needs (high, moderate and low), with models and modalities of interpreting delivery designed around these differing needs. High needs practices, with high migrant populations, had on-site interpreting due to impracticalities of arranging per-appointment interpreting and the perception that face-to-face interpreting is the gold standard. In contrast, low needs areas primarily used telephone interpreting due to perceived ease of access, variety of languages and interpreters and mitigating interpreter travel constraints in rural areas. Similarities across sites included using Google Translate as a supporting interpreting tool and the rarity of video interpreting. Frontline staff across sites held similar expectations of interpreters (having knowledge, interpersonal skills and social/cultural acumen) and interpreting service providers (smooth information technology, high standards and language variety). Factors impacting interpreting delivery were needs-specific and cross-cutting. High needs sites experienced resource pressures, ‘mop-up’ work from secondary care, patients having complex needs and doing extra ‘hidden’ work such as handling non-medical problems. All sites encountered issues with interpreting delivery systems. Conclusions: Interpreting services tailored to population needs and primary care priorities are fundamental to delivery of interpreting services. Policy and national guidance should take language need into account and support local contexts to deliver approaches tailored to their needs.

Background: Communication difficulties due to unmet language needs are a driver of inequality in healthcare access. The provision of professional interpreting services should mitigate these, and their use is associated with improved patient outcomes. However, interpreting uptake in England is suboptimal and there has been limited research focused on understanding patient experiences and the potential impact on uptake. This multilingual study explored patient perspectives of access to and experience of language support in general practice (primary care) in England, including the use of professional interpreting services and informal language support (i.e. family/friends). Method: This is a qualitative study based on face-to-face semi-structured interviews with 30 participants from South Asian backgrounds (Pakistani, Indian, Bangladeshi), with no/limited proficiency, living in England. Interviews were analysed with inductive thematic analysis. Patient advisors were involved in all aspects of the research and interpretation of the findings was supported by public engagement focus groups. Results: Three main themes described participants challenges related to uptake of professional interpreting services including (1) the burden of articulating need, (2) prioritisation of different types of language support (professional/informal), and (3) perceptions of professional interpreting services. Participants described an onus on them to arrange interpreting themselves, whilst regular use of informal language support could inhibit offers of professional language support. Online/digital booking systems perpetuated these challenges. Patient illness appraisal impacted decision making, with informal language support prioritised for less serious matters. Patients highlighted the importance of having confidence in these services, and face-to-face interpreting was preferred to remote interpreting. Conclusions: No/low English proficiency patients need additional support when booking interpreted-assisted appointments. Increasing patient awareness of and confidence in professional language support is vital to uptake of services. Emphasising the benefits of professional support over informal options is important, with links to patient safety. We provide recommendations for general practice in how to support the uptake of professional interpreting services.

Background: Exploring the role of structural power in relation to an individual's location in society can yield novel insights into cancer inequities. We aimed to understand how minority ethnic women's identities (age, gender, ethnicity, social position) intersected with social networks and healthcare services to influence their experiences of breast cancer care.Methods: Semi‐structured interviews with 20 women aged 31–60 years with a breast cancer diagnosis identifying as: Asian (n = 7), Black (n = 9), and of mixed ethnicity (n = 4) about their breast cancer journey. Data were analysed using Framework Analysis.Results: We developed four themes; feeling stereotyped by (a) healthcare professionals (HCPs) and (b) social networks; influence of HCPs' knowledge, attitudes, and behaviours; perceived barriers in healthcare services; and influence of cultural beliefs. We provided a visual representation to illustrate the multifaceted factors that explain pathways to breast cancer inequities for these groups.Conclusion: Our findings underscored that minority ethnic women negotiated complex processes that influence their coping responses, access to services, and management of their disease. Our study exposed institutional deficiencies that systematically disadvantage minority ethnic women. These findings suggest that policymakers and clinicians should reformulate policies and cancer services to ensure all women with breast cancer receive equal and optimal care.

Background: Nonattendance at colonoscopy is associated with reduced colorectal cancer (CRC) survival. Purpose: The aim of this research was to quantify barriers to colonoscopy and test the effectiveness of behavior change techniques (BCTs) to address them. Methods: Two studies were conducted. In the first study, participants were asked to imagine their next CRC screening result was abnormal, and were presented with the standard abnormal result letter used in the English CRC Screening Programme. Participants then completed a short survey. Multivariate regression tested associations between perceived barriers and intentions. In the second study, participants were randomly presented with a modified version of the abnormal results letter, which incorporated one or more BCTs, designed to target barriers identified in study 1, using a 28 factorial design. Participants then completed the same survey used in study 1. Multivariate regression tested the effectiveness of the BCTs to modify target barriers and intentions. Results: In study 1, 5 items were associated with intentions, namely “Lack of understanding that CRC can be asymptomatic,” “Perceived importance of screening,” “Transport/travel,” “Shared decision making and family influenced participation,” and “Fear of pain and discomfort” (all P’s < .05). In study 2, the inclusion of a social support message, targeting “shared decision-making and family influenced participation,” facilitated independent decision making and increased intentions (both P’s < .05). There was no evidence to support the remaining 7 BCTs to modify barriers or intentions (all P’s < .05). Conclusions: Inclusion of a social support message facilitated independent decision-making and improved intentions.

Interpreting services bridge language barriers that may prevent patients and clinicians from understanding each other, impacting quality of care and health outcomes. Despite this, there is limited up-to-date evidence regarding the barriers to and facilitators of uptake in primary care. The aim of this study was to ascertain current national uptake and experience of interpreting services in primary care (general practice) by South Asian communities in England. We conducted a national cross-sectional survey in 2023 with people with limited or no English language proficiency (n = 609). Multilingual researchers interviewed people from Bangladeshi (n = 213), Indian (n = 200), and Pakistani (n = 196) backgrounds from four regions in England (Greater London, Midlands, Yorkshire and the Humber, North West). Sixty-three percent of participants reported using professional interpreting services in primary care. The most common modality was face-to-face interpreting (55%), followed by telephone (17%) and video (8%). Multivariable analysis identified several correlates of lower uptake: participants from Indian backgrounds, those living in the Midlands, and those whose family member/friend interpreted for them within the past year were less likely to have used a professional interpreter provided by their general/family practice. Participants who had visited primary care within the last 12 months, had requested an interpreter but were told they could not have one, were informed about professional interpreting services, and were given choice in their language support were more likely to have used a professional interpreter. Our approach provides novel data on professional interpreting service use and evidence about the factors that may play a role in patient uptake and experience.

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.

Background: Primary care electronic health records provide a rich source of information for inequalities research. However, the reliability and validity of the research derived from these records depends on the completeness and resolution of the codelists used to identify marginalised populations. Aim: The aim of this project was to develop comprehensive codelists for identifying ethnic minorities, people with learning disabilities (LD), people with severe mental illness (SMI) and people who are transgender. Design and setting: This study was a codelist development project, conducted using primary care data from the United Kingdom. Method: Groups of interest were defined a priori. Relevant clinical codes were identified by searching Clinical Practice Research Datalink (CPRD) publications, codelist repositories and the CPRD code browser. Relevant codelists were downloaded and merged according to marginalised group. Duplicates were removed and remaining codes reviewed by two general practitioners. Comprehensiveness was assessed in a representative CPRD population of 10,966,759 people, by comparing the frequencies of individuals identified when using the curated codelists, compared to commonly used alternatives. Results: A total of 52 codelists were identified. 1,420 unique codes were selected after removal of duplicates and GP review. Compared with comparator codelists, an additional 48,017 (76.6%), 52,953 (68.9%) and 508 (36.9%) people with a LD, SMI or transgender code were identified. The frequencies identified for ethnicity were consistent with expectations for the UK population. Conclusion: The codelists curated through this project will improve inequalities research by improving standards of identifying marginalised groups in primary care data. HOW THIS FITS IN: The reliability and validity of primary care data for inequalities research depends on the comprehensiveness of the codes used to identify people from marginalised groups. This study set out to develop comprehensive codelists for the identification of four key groups, known to experience health inequalities. We developed comprehensive codelists for identifying ethnic minorities, learning disabilities, severe mental illness and people who are transgender, using a systematic approach. The codelists were validated by two general practitioners, assessed in a representative sample, and can now be used in primary care practice and research, both nationally and internationally.