Internet and Telephone Support for Discontinuing Long-Term Antidepressants: The REDUCE Cluster Randomized Trial.

Importance: There is significant concern regarding increasing long-term antidepressant treatment for depression beyond an evidence-based duration. Objective: To determine whether adding internet and telephone support to a family practitioner review to consider discontinuing long-term antidepressant treatment is safe and more effective than a practitioner review alone. Design, Setting, and Participants: In this cluster randomized clinical trial, 131 UK family practices were randomized between December 1, 2018, and March 31, 2022, with remote computerized allocation and 12 months of follow-up. Participants and researchers were aware of allocation, but analysis was blind. Participants were adults who were receiving antidepressants for more than 1 year for a first episode of depression or more than 2 years for recurrent depression who were currently well enough to consider discontinuation and wished to do so and who were at low risk of relapse. Of 6725 patients mailed invitations, 330 (4.9%) were eligible and consented. Interventions: Internet and telephone self-management support, codesigned and coproduced with patients and practitioners. Main Outcomes and Measures: The primary (safety) outcome was depression at 6 months (prespecified complete-case analysis), testing for noninferiority of the intervention to under 2 points on the 9-item Patient Health Questionnaire (PHQ-9). Secondary outcomes (testing for superiority) were antidepressant discontinuation, anxiety, quality of life, antidepressant withdrawal symptoms, mental well-being, enablement, satisfaction, use of health care services, and adverse events. Analyses for the main outcomes were performed on a complete-case basis, and multiple imputation sensitivity analysis was performed on an intention-to-treat basis. Results: Of 330 participants recruited (325 eligible for inclusion; 178 in intervention practices and 147 in control practices; mean [SD] age at baseline, 54.0 [14.9] years; 223 women [68.6%]), 276 (83.6%) were followed up at 6 months, and 240 (72.7%) at 12 months. The intervention proved noninferior; mean (SD) PHQ-9 scores at 6 months were slightly lower in the intervention arm than in the control arm in the complete-case analysis (4.0 [4.3] vs 5.0 [4.7]; adjusted difference, -1.1; 95% CI, -2.1 to -0.1; P = .03) but not significantly different in an intention-to-treat multiple imputation sensitivity analysis (adjusted difference, -0.9 (95% CI, -1.9 to 0.1; P = .08). By 6 months, antidepressants had been discontinued by 66 of 145 intervention arm participants (45.5%) who provided discontinuation data and 54 of 129 control arm participants (41.9%) (adjusted odds ratio, 1.02; 95% CI, 0.52-1.99; P = .96). In the intervention arm, antidepressant withdrawal symptoms were less severe, and mental well-being was better compared with the control arm; differences were small but significant. There were no significant differences in the other outcomes; 28 of 179 intervention arm participants (15.6%) and 22 of 151 control arm participants (14.6%) experienced adverse events. Conclusions and Relevance: In this cluster randomized clinical trial of adding internet and telephone support to a practitioner review for possible antidepressant discontinuation, depression was slightly better with support, but the rate of discontinuation of antidepressants did not significantly increase. Improvements in antidepressant withdrawal symptoms and mental well-being were also small. There were no significant harms. Family practitioner review for possible discontinuation of antidepressants appeared safe and effective for more than 40% of patients willing and well enough to discontinue. Trial Registration: ISRCTN registry Identifiers: ISRCTN15036829 (internal pilot trial) and ISRCTN12417565 (main trial).

Where are the inequalities in colorectal cancer care in a country with universal healthcare? A systematic review and narrative synthesis.

OBJECTIVE: Patients diagnosed with colorectal cancer living in more deprived areas experience worse survival than those in more affluent areas. Those living in more deprived areas face barriers to accessing timely, quality healthcare. These barriers may contribute to socioeconomic inequalities in survival. We evaluated the literature for any association between socioeconomic group, hospital delay and treatments received among patients with colorectal cancer in the UK, a country with universal healthcare. DESIGN: MEDLINE, EMBASE, CINAHL, CENTRAL, SCIE, AMED and PsycINFO were searched from inception to January 2023. Grey literature, including HMIC, BASE and Google Advanced Search, and forward and backward citation searches were conducted. Two reviewers independently reviewed titles, abstracts and full-text articles. Observational UK-based studies were included if they reported socioeconomic measures and an association with either hospital delay or treatments received. The QUIPS tool assessed bias risk, and a narrative synthesis was conducted. The review is reported to Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2020. RESULTS: 41 of the 7209 identified references were included. 12 studies evaluated 7 different hospital intervals. There was a significant association between area-level deprivation and a longer time from first presentation in primary care to diagnosis. 32 studies evaluated treatments received. There were socioeconomic inequalities in surgery and chemotherapy but not radiotherapy. CONCLUSION: Patients with colorectal cancer face inequalities across the cancer care continuum. Further research is needed to understand why and what evidence-based actions can reduce these inequalities in treatment. Qualitative research of patients and clinicians conducted across various settings would provide a rich understanding of the complex factors that drive these inequalities. Further research should also consider using a causal approach to future studies to considerably strengthen the interpretation. Clinicians can try and mitigate some potential causes of colorectal cancer inequalities, including signposting to financial advice and patient transport schemes. PROSPERO REGISTRATION NUMBER: CRD42022347652.

Turning a Curve: How People Use Everyday Resources to Negotiate Recovery From Cancer Treatment With Curative Intent.

Many more cancers are treated with intent to cure now than in previous decades, but for most, this involves significant effects from which people need to recover psychologically and socially, as well as physically. This longitudinal photo-elicitation interview study uses grounded theory to explain how people discharged from specialist care made use of everyday social and material resources to manage this process at home. Recovery is presented as a curve in life's pathway requiring gradual reorientation, drawing on social worlds and domestic resources to calibrate this process. Findings are described in three stages: (1) responding to diagnosis and treatment, (2) using social resources for meaning-making, and (3) developing assets for recovery. During treatment, participants drew on past identities to reinforce their sense of self, and personalized health care communication supported this process. In the weeks after treatment, new frameworks of understanding were constructed from perspectives on cancer encountered in the family, workplace, and outpatient clinics. Recovery processes included the negotiation of personal change, the renegotiation of close relationships, and the use of everyday resources to regain three sensations: control, comfort, and continuity. Supportive care would benefit from an individualized exploration of the assets that can help people to negotiate this challenging phase as treatment comes to a close. Possibilities for self-care (the maintenance of health and well-being in the context of everyday life) can be explored and assessed through personalized discussion around the identities, social worlds, and everyday resources available to each individual.

Where are the inequalities in ovarian cancer care in a country with universal healthcare? A systematic review and narrative synthesis.

INTRODUCTION: Patients diagnosed with ovarian cancer from more deprived areas may face barriers to accessing timely, quality healthcare. We evaluated the literature for any association between socioeconomic group, treatments received and hospital delay among patients diagnosed with ovarian cancer in the United Kingdom, a country with universal healthcare. METHODS: We searched MEDLINE, EMBASE, CINAHL, CENTRAL, SCIE, AMED, PsycINFO and HMIC from inception to January 2023. Forward and backward citation searches were conducted. Two reviewers independently reviewed titles, abstracts, and full-text articles. UK-based studies were included if they reported socioeconomic measures and an association with either treatments received or hospital delay. The inclusion of studies from one country ensured greater comparability. Risk of bias was assessed using the QUIPS tool, and a narrative synthesis was conducted. The review is reported to PRISMA 2020 and registered with PROSPERO [CRD42022332071]. RESULTS: Out of 2876 references screened, ten were included. Eight studies evaluated treatments received, and two evaluated hospital delays. We consistently observed socioeconomic inequalities in the likelihood of surgery (range of odds ratios 0.24-0.99) and chemotherapy (range of odds ratios 0.70-0.99) among patients from the most, compared with the least, deprived areas. There were no associations between socioeconomic groups and hospital delay. POLICY SUMMARY: Ovarian cancer treatments differed between socioeconomic groups despite the availability of universal healthcare. Further research is needed to understand why, though suggested reasons include patient choice, health literacy, and financial and employment factors. Qualitative research would provide a rich understanding of the complex factors that drive these inequalities.

Challenges and opportunities for cervical screening in women over the age of 50 years: a qualitative study.

BACKGROUND: Cervical cancer is a preventable disease. Cases in women age >50 years are predicted to rise by 60% in the next two decades, yet this group are less likely to attend for screening than younger women. AIM: To seek novel solutions to the challenges of cervical screening in women >50 years of age by examining practitioner and service-user experiences. DESIGN AND SETTING: Semi-structured interviews were conducted with 28 practitioners and 24 service users >50 years of age, recruited via UK primary care networks in Northern England in 2016-2017, to explore experiences related to cervical screening. METHOD: An inductive thematic analysis was conducted to explore the data. RESULTS: Findings are presented under three key themes. The first, exploring the barriers to successful cervical screening, examines the influences of sexuality and early experiences of screening on attendance, and how preventive health care becomes a low priority as women age. The second, the role of relationships, explores how peer talk shapes attitudes towards cervical screening, how teamwork between practitioners engenders investment in cervical screening, and how interactions between service users and primary care over time can significantly affect intentions to screen. The third, what constitutes good practice, describes practical and sensitive approaches to screening tailored to women aged >50 years. CONCLUSION: Good practice involves attention to structural and practical challenges, and an understanding of the role of relationships in shaping screening intentions. Experienced practitioners adapt procedures to increase sensitivity, and balance time invested in problem solving against the benefits of reaching practice targets for attendance. Building networks of expertise across multiple practices can increase practitioner skill in screening this age group.

Translating qualitative data into intervention content using the Theoretical Domains Framework and stakeholder co-design: a worked example from a study of cervical screening attendance in older women.

BACKGROUND: Previous screening interventions have demonstrated a series of features related to social determinants which have increased uptake in targeted populations, including the assessment of health beliefs and barriers to screening attendance as part of intervention development. Many studies cite the use of theory to identify methods of behaviour change, but fail to describe in detail how theoretical constructs are transformed into intervention content. The aim of this study was to use data from a qualitative exploration of cervical screening in women over 50 in the UK as the basis of intervention co-design with stakeholders using behavioural change frameworks. We describe the identification of behavioural mechanisms from qualitative data, and how these were used to develop content for a service-user leaflet and a video animation for practitioner training. The interventions aimed to encourage sustained commitment to cervical screening among women over 50, and to increase sensitivity to age-related problems in screening among primary care practitioners. METHODS: Secondary coding of a qualitative data set to extract barriers and facilitators of cervical screening attendance. Barrier and facilitator statements were categorised using the Theoretical Domains Framework (TDF) to identify relevant behaviour change techniques (BCTs). Key TDF domains and associated BCTs were presented in stakeholder focus groups to guide the design of intervention content and mode of delivery. RESULTS: Behavioural determinants relating to attendance clustered under three domains: beliefs about consequences, emotion and social influences, which mapped to three BCTs respectively: (1) persuasive communication/information provision; (2) stress management; (3) role modelling and encouragement. Service-user stakeholders translated these into three pragmatic intervention components: (i) addressing unanswered questions, (ii) problem-solving practitioner challenges and (iii) peer group communication. Based on (ii), practitioner stakeholders developed a call to action in three areas - clinical networking, history-taking, and flexibility in screening processes. APEASE informed modes of delivery (a service-user leaflet and a cartoon animation for practitioners). CONCLUSION: The application of the TDF to qualitative data can provide an auditable protocol for the translation of qualitative data into intervention content.

Geographical distance and reduced access to palliative radiotherapy: systematic review and meta-analysis.

BACKGROUND: Palliative radiotherapy (PRT) is an effective way of reducing symptoms caused by advanced incurable cancer. Several studies have investigated factors that contribute to inequalities in access to PRT; distance to a radiotherapy centre has been identified as one potential barrier. AIM: To assess whether there is an association between distance to a radiotherapy centre and utilisation rates of PRT in adults with cancer. METHODS: A systematic review and meta-analysis protocol was registered in the PROSPERO database (CRD42020190772). MEDLINE, EMBASE, CINAHL and APA-PsycINFO were searched for relevant papers up to 28 February 2021. RESULTS: Twenty-one studies were included. Twelve studies focused on whether patients with incurable cancer received PRT, as part of their treatment package. Pooled results reported that living ≥50 km vs <50 km from the radiotherapy centre was associated with a reduced likelihood of receiving PRT (OR 0.84 (95%CI 0.80, 0.88)). Nine focused on distance from the radiotherapy centre and compared single-fraction (SF) versus multiple-fraction PRT, indicating that patients living further away were more likely to receive SF. Pooled results comparing ≥50 km versus <50 km showed increased odds of receiving SF for those living ≥50 km (OR 1.48 (95%CI 1.26,1.75)). CONCLUSION: Patients living further away from radiotherapy centres were less likely to receive PRT and those who received PRT were more likely to receive SF PRT, providing some evidence of inequalities in access to PRT treatment based on proximity to centres providing radiotherapy. Further research is needed to understand whether these inequalities are influenced by clinical referral patterns or by patients unwilling or unable to travel longer distances. PROSPERO REGISTRATION NUMBER: CRD42020190772.

A qualitative exploration of women's perspectives and acceptability of including new cancer awareness information in all-clear breast or cervical screening results.

OBJECTIVE: This study explored women's perspectives on the acceptability of including new cancer information with an all-clear breast or cervical screening result letter (using ovarian cancer as a case study). METHODS: In 2016, six focus group discussions were conducted with women aged 25-70 years old, eligible for invitation to the NHS breast or cervical screening programme and resident in England. The focus groups lasted 60-90 min and were held in community venues. Data were analysed using thematic analysis. RESULTS: Thirty-eight women aged 25-67 years old participated in the focus groups. Data analysis yielded six descriptive themes: general cancer awareness, taking advantage of a 'teachable moment', a double-edge sword, barriers to accepting and using new cancer information, motivators for accepting and using new cancer information and wider strategies to increase cancer awareness in women. Women welcomed the inclusion of new cancer information in all-clear screening results but highlighted pertinent lessons to be considered to maximise the usefulness of the approach. CONCLUSION: While women perceived this approach as acceptable, it is pertinent to note the potential of the new cancer information to stimulate anxiety and potentially widen inequalities by excluding non-attenders at screening programmes. Specific complementary and tailored approaches are necessary to mitigate these limitations.

A cluster randomised trial of a Needs Assessment Tool for adult Cancer patients and their carers (NAT-C) in primary care: A feasibility study.

BACKGROUND: People with cancer often have unidentified symptoms and social care needs. The Needs Assessment Tool-Cancer (NAT-C) is a validated, structured method of assessing patient/carer concerns and prompting action, to address unmet need. AIMS: Assess feasibility and acceptability of a definitive two-armed cluster randomised trial of NAT-C in primary care by evaluating: recruitment of GP practices, patients and carers; most effective approach of ensuring NAT-C appointments, acceptability of study measures and follow-up. METHODS: Non-blinded, feasibility study in four General Practices, with cluster randomisation to method of NAT-C appointment delivery, and process evaluation. Adults with active cancer were invited to participate with or without carer. Practices cluster randomised (1:1) to Arm I: promotion and use of NAT-C with a NAT-C trained clinician or Arm II: clinician of choice irrespective of training status. Participants completed study questionnaires at: baseline, 1, 3 and 6 months. Patients booked a 20 minute needs-assessment appointment post-baseline. Patients, carers and GP practice staff views regarding the study sought through interviews/focus groups. Quantitative data were analysed descriptively. Qualitative data were analysed thematically, informed by Normalisation Process Theory. Progression to a definitive trial was assessed against feasibility outcomes, relating to: recruitment rate, uptake and delivery of the NAT-C, data collection and quality. RESULTS: Five GP practices approached, four recruited and trained to use the NAT-C. Forty-seven participants and 17 carers recruited. At baseline, 34/47 (72%) participants reported at least one moderate-severe unmet need, confirming study rationale. 32/47 (68%) participants received a NAT-C-guided consultation, 19 of which on Arm I. Study attrition at one month (n = 44 (94%), n = 16 (94%)), three months (n = 38 (81%), n = 14 (82%)) and six months (n = 32 (68%), n = 10 (59%)). Fifteen patient interviews conducted across the whole study and one focus group at each GP practice. Participants supported a definitive study and found measures acceptable. CONCLUSION: The feasibility trial indicated that recruitment rate, intervention uptake and data collection were appropriate, with refinements, for a definitive multi-centre cluster randomised controlled trial. Feasibility outcomes informed the design of a 2-armed cluster randomised controlled trial to test the effectiveness and cost-effectiveness of the NAT-C compared with usual care.

Yorkshire Lung Screening Trial (YLST): protocol for a randomised controlled trial to evaluate invitation to community-based low-dose CT screening for lung cancer versus usual care in a targeted population at risk.

INTRODUCTION: Lung cancer is the world's leading cause of cancer death. Low-dose computed tomography (LDCT) screening reduced lung cancer mortality by 20% in the US National Lung Screening Trial. Here, we present the Yorkshire Lung Screening Trial (YLST), which will address key questions of relevance for screening implementation. METHODS AND ANALYSIS: Using a single-consent Zelen's design, ever-smokers aged 55-80 years registered with a general practice in Leeds will be randomised (1:1) to invitation to a telephone-based risk-assessment for a Lung Health Check or to usual care. The anticipated number randomised by household is 62 980 individuals. Responders at high risk will be invited for LDCT scanning for lung cancer on a mobile van in the community. There will be two rounds of screening at an interval of 2 years. Primary objectives are (1) measure participation rates, (2) compare the performance of PLCOM2012 (threshold ≥1.51%), Liverpool Lung Project (V.2) (threshold ≥5%) and US Preventive Services Task Force eligibility criteria for screening population selection and (3) assess lung cancer outcomes in the intervention and usual care arms. Secondary evaluations include health economics, quality of life, smoking rates according to intervention arm, screening programme performance with ancillary biomarker and smoking cessation studies. ETHICS AND DISSEMINATION: The study has been approved by the Greater Manchester West research ethics committee (18-NW-0012) and the Health Research Authority following review by the Confidentiality Advisory Group. The results will be disseminated through publication in peer-reviewed scientific journals, presentation at conferences and on the YLST website. TRIAL REGISTRATION NUMBERS: ISRCTN42704678 and NCT03750110.

REDUCE (Reviewing long-term antidepressant use by careful monitoring in everyday practice) internet and telephone support to people coming off long-term antidepressants: protocol for a randomised controlled trial.

BACKGROUND: Around one in ten adults take antidepressants for depression in England, and their long-term use is increasing. Some need them to prevent relapse, but 30-50% could possibly stop them without relapsing and avoid adverse effects and complications of long-term use. However, stopping is not always easy due to withdrawal symptoms and a fear of relapse of depression. When general practitioners review patients on long-term antidepressants and recommend to those who are suitable to stop the medication, only 6-8% are able to stop. The Reviewing long-term antidepressant use by careful monitoring in everyday practice (REDUCE) research programme aims to identify safe and cost-effective ways of helping patients taking long-term antidepressants taper off treatment when appropriate. METHODS: Design: REDUCE is a two-arm, 1:1 parallel group randomised controlled trial, with randomisation clustered by participating family practices. SETTING: England and north Wales. POPULATION: patients taking antidepressants for longer than 1 year for a first episode of depression or longer than 2 years for repeated episodes of depression who are no longer depressed and want to try to taper off their antidepressant use. INTERVENTION: provision of 'ADvisor' internet programmes to general practitioners or nurse practitioners and to patients designed to support antidepressant withdrawal, plus three patient telephone calls from a psychological wellbeing practitioner. The control arm receives usual care. Blinding of patients, practitioners and researchers is not possible in an open pragmatic trial, but statistical and health economic data analysts will remain blind to allocation. OUTCOME MEASURES: the primary outcome is self-reported nine-item Patient Health Questionnaire at 6 months for depressive symptoms. SECONDARY OUTCOMES: depressive symptoms at other follow-up time points, anxiety, discontinuation of antidepressants, social functioning, wellbeing, enablement, quality of life, satisfaction, and use of health services for costs. SAMPLE SIZE: 402 patients (201 intervention and 201 controls) from 134 general practices recruited over 15-18 months, and followed-up at 3, 6, 9 and 12 months. A qualitative process evaluation will be conducted through interviews with 15-20 patients and 15-20 practitioners in each arm to explore why the interventions were effective or not, depending on the results. DISCUSSION: Helping patients reduce and stop antidepressants is often challenging for practitioners and time-consuming for very busy primary care practices. If REDUCE provides evidence showing that access to internet and telephone support enables more patients to stop treatment without increasing depression we will try to implement the intervention throughout the National Health Service, publishing practical guidance for professionals and advice for patients to follow, publicised through patient support groups. TRIAL REGISTRATION: ISRCTN:12417565. Registered on 7 October 2019.

'Unpacking' pathways to lymphoma and myeloma diagnosis: Do experiences align with the Model of Pathways to Treatment? Findings from a UK qualitative study with patients and relatives.

OBJECTIVES: To explore alignment of experiences before lymphoma and myeloma diagnosis with the appraisal, help seeking and diagnostic intervals in the Model of Pathways to Treatment (MPT). DESIGN: A qualitative study using in-depth semistructured interviews with patients and relatives. Interviews were transcribed verbatim, anonymised and analysed using qualitative description. SETTING: A UK population-based haematological malignancy patient cohort. PARTICIPANTS: Fifty-five patients (35 lymphoma, 20 myeloma: diagnosed 2014-2016) and 28 relatives participated, within around a year of the patient's diagnosis. Patients were selected from those in the cohort who had returned a questionnaire about their symptoms and help seeking, and consented to contact for further research. Sampling was purposive, to achieve maximum variation in age, sex and time to diagnosis. RESULTS: Participants described time from symptom onset to diagnosis as ranging from several weeks to years. Pathways largely aligned with MPT components and help seeking could lead to the rapid investigations and identification of abnormalities. However, symptoms could be vague and/or inadvertently interpreted as other conditions, which if perpetuated, could cause diagnostic delay. The latter was associated with chaotic pathways, with activities rarely occurring only once or in a linear sequence. Rather, intermittent or ongoing processes were described, moving forward and backwards through intervals. This is 'unpacked' within five themes: (1) appraisal and reappraisal; (2) patient-initiated self-management/treatment; (3) initial help seeking; (4) re-presentation; and (5) patient-initiated actions, decisions and emotions during re-presentation. Within these themes, various healthcare professionals were consulted, often many times, as symptoms persisted/progressed. Input from family/friends was described as substantial, as was the extent to which information seeking occurred. CONCLUSION: Lymphoma and myeloma pathways align with the MPT, but do not fully capture the repetition and complexity described by participants. Time to diagnosis was often prolonged, despite the best efforts of patients, relatives and healthcare professionals. The impact of National Health Service England's Multi-diagnostic Disciplinary Centres on time to haematological cancer diagnosis remains to be seen.

Palliative care for non-cancer conditions in primary care: a time trend analysis in the UK (2009-2014).

OBJECTIVES: While guidelines recommend palliative care in non-cancer conditions, this has not been widely implemented. We examined whether the recording of a palliative care approach and the numbers of hospital deaths for deceased patients with heart failure, dementia, chronic obstructive pulmonary disease (COPD) and cancer have changed since the UK End-of-Life Care Strategy was introduced. METHODS: We conducted sequential cross-sectional studies of decedents within the UK's Clinical Practice Research Datalink and Hospital Episode Statistics. All adults with a primary care record of COPD (n=5426), dementia (n=7339), heart failure (n=6409) or cancer (n=18 668) who died during three 1 year periods (April 2009 to March 2014) were included. Evidence of a palliative care approach was identified from primary care records, and death in hospital from secondary care data. RESULTS: From 2009 to 2014, proportions with a primary care record of palliative care increased for COPD from 13.6% to 21.2%; dementia from 20.9% to 40.7%; and heart failure from 12.6% to 21.2%; but remained substantially lower than for cancer (57.6% to 61.9%). Median days before death of recording improved for COPD (145 to 224) and dementia (44 to 209); but not for heart failure (168.5 to 153) and cancer (123 to 114). Trends in hospital deaths were not consistently downward, although the proportions of patients dying in hospital were lower in the last period compared with the first. CONCLUSIONS: Recording of a palliative care approach for non-cancer conditions has increased since the introduction of the UK End-of-Life Care Strategy, but remains inadequate.

Non-attendance at urgent referral appointments for suspected cancer: a qualitative study to gain understanding from patients and GPs.

BACKGROUND: The 2-week-wait urgent referral policy in the UK has sought to improve cancer outcomes by accelerating diagnosis and treatment. However, around 5-7% of symptomatic referred patients cancel or do not attend their hospital appointment. While subsequent cancer diagnosis was less likely in non-attenders, those with a diagnosis had worse early mortality outcomes. AIM: To examine how interpersonal, communication, social, and organisational factors influence a patient's non-attendance. DESIGN AND SETTING: Qualitative study in GP practices in one Northern English city. METHOD: In-depth, individual interviews were undertaken face-to-face or by telephone between December 2016 and May 2018, followed by thematic framework analysis. RESULTS: In this study 21 GPs, and 24 patients who did not attend or had cancelled their appointment were interviewed, deriving a range of potential explanations for non-attendance, including: system flaws; GP difficulties with booking appointments; patient difficulties with navigating the appointment system, particularly older patients and those from more deprived areas; patients leading 'difficult lives'; and patients' expectations of the referral, informed by their beliefs, circumstances, priorities, and the perceived prognosis. GPs recognised the importance of communication with the patient, particularly the need to tailor communication to perceived patient understanding and anxiety. GPs and practices varied in their responses to patient non-attendance, influenced by time pressures and perceptions of patient responsibility. CONCLUSION: Failure to be seen within 2 weeks of urgent referral resulted from a number of patient and provider factors. The urgent referral process in general practice and cancer services should accommodate patient perceptions and responses, facilitate referral and attendance, and enable responses to patient non-attendance.

Non-attendance at urgent referral appointments for suspected cancer: a qualitative study to gain understanding from patients and GPs.

BACKGROUND: The 2-week-wait urgent referral policy in the UK has sought to improve cancer outcomes by accelerating diagnosis and treatment. However, around 5-7% of symptomatic referred patients cancel or do not attend their hospital appointment. While subsequent cancer diagnosis was less likely in non-attenders, those with a diagnosis had worse early mortality outcomes. AIM: To examine how interpersonal, communication, social, and organisational factors influence a patient's non-attendance. DESIGN AND SETTING: Qualitative study in GP practices in one Northern English city. METHOD: In-depth, individual interviews were undertaken face-to-face or by telephone between December 2016 and May 2018, followed by thematic framework analysis. RESULTS: In this study 21 GPs, and 24 patients who did not attend or had cancelled their appointment were interviewed, deriving a range of potential explanations for non-attendance, including: system flaws; GP difficulties with booking appointments; patient difficulties with navigating the appointment system, particularly older patients and those from more deprived areas; patients leading 'difficult lives'; and patients' expectations of the referral, informed by their beliefs, circumstances, priorities, and the perceived prognosis. GPs recognised the importance of communication with the patient, particularly the need to tailor communication to perceived patient understanding and anxiety. GPs and practices varied in their responses to patient non-attendance, influenced by time pressures and perceptions of patient responsibility. CONCLUSION: Failure to be seen within 2 weeks of urgent referral resulted from a number of patient and provider factors. The urgent referral process in general practice and cancer services should accommodate patient perceptions and responses, facilitate referral and attendance, and enable responses to patient non-attendance.

Patient non-attendance at urgent referral appointments for suspected cancer and its links to cancer diagnosis and one year mortality: A cohort study of patients referred on the Two Week Wait pathway.

BACKGROUND: The 'Two Week Wait' policy aims to ensure patients with suspected cancer are seen within two weeks of referral. However, patient non-attendance can result in this target being missed. This study aimed to identify predictors of non-attendance; and analyse the relationship between attendance and outcomes including cancer diagnosis and early mortality. METHODS: A cohort study of 109,433 adults registered at 105 general practices, referred to a cancer centre within a large NHS hospital trust (April 2009 to December 2016) on the 'Two Week Wait' pathway. RESULTS: 5673 (5.2%) patients did not attend. Non-attendance was largely predicted by patient factors (younger and older age, male gender, greater deprivation, suspected cancer site, earlier year of referral, greater distance to the hospital) over practice factors (greater deprivation, lower Quality and Outcomes Framework score, lower cancer conversion rate, lower cancer detection rate). 10,360 (9.6%) patients were diagnosed with cancer within six months of referral (9.8% attending patients, 5.6% non-attending patients). Among these patients, 2029 (19.6%) died within 12 months of diagnosis: early mortality risk was 31.3% in non-attenders and 19.2% in attending patients. CONCLUSIONS: Non-attendance at urgent referral appointments for suspected cancer involves a minority of patients but happens in predictable groups. Cancer diagnosis was less likely in non-attending patients but these patients had worse early mortality outcomes than attending patients. The study findings have implications for cancer services and policy.

An integrated understanding of the complex drivers of emergency presentations and admissions in cancer patients: Qualitative modelling of secondary-care health professionals' experiences and views.

The number of cancer-related emergency presentations and admissions has been steadily increasing in the UK. Drivers of this phenomenon are complex, multifactorial and interlinked. The main objective of this study was to understand the complexity of emergency hospital use in cancer patients. We conducted semi-structured interviews with 42 senior clinicians (20 doctors, 22 nurses) with diverse expertise and experience in caring for acutely ill cancer patients in the secondary care setting. Data analysis included thematic analysis and purposive text analysis to develop Causal Loop Diagrams. Our Causal Loop Diagrams represent an integrated understanding of the complex factors (13) influencing emergency hospital use in cancer patients. Eight factors formed five reinforcing feedback loops and therefore were high-leverage influences: Ability of patients and carers to self-care and cope; Effective and timely management of ambulatory care sensitive conditions by primary and community care; Sufficient and effective social care for patients and carers; Avoidable emergency hospital use; Bed capacity; Patients accessing timely appropriate specialist inpatient or ambulatory care; Prompt and effective management and prevention of acute episode; Timely and safe discharge with appropriate support. The loops show that reduction of avoidable hospital use helps relieve hospital bed pressure; improved bed capacity then has a decisive, positive influence on patient pathway and thus outcome and experience in the hospital; in turn, better in-hospital care and discharge help patients and carers self-care and cope better back home with better support from community-based health and social care services, which then reduces their future emergency hospital use. To optimise acute and emergency cancer care, it is also essential that patients, carers and other clinicians caring for cancer patients have prompt access to senior cancer specialists for advice, assessment, clinical decision and other support. The findings provide a useful framework and focus for service planners aiming to optimise care.

Facilitated group work for people with long-term conditions: a systematic review of benefits from studies of group-work interventions.

BACKGROUND: About 15.4 million people in the UK live with a long-term condition. Of the health and social care spend, 70% is invested in caring for this population. Evidence suggests that group-work interventions offer patient support, improved outcomes, and reduce the costs of care. AIM: To review the current evidence base examining the effectiveness of group work in long-term physical disease where such groups are facilitated by healthcare professionals. DESIGN AND SETTING: Systematic review and narrative synthesis of studies of group-work interventions led by health professionals for adults with specified long-term illnesses. METHOD: MEDLINE, EMBASE, PsycINFO, and Cochrane databases were systematically searched using terms relating to group work and long-term conditions. Studies were included if they were randomised controlled trials (RCTs) with a control group that did not include group work. RESULTS: The 14 included studies demonstrated a high degree of heterogeneity in terms of participant characteristics, interventions, and outcome measures and were of varying quality. The studies demonstrated some statistically significant improvements in pain, psychological outcomes, self-efficacy, self-care, and quality of life resulting from intervention. CONCLUSION: This review demonstrates significant benefits resulting from group participation, in adults with long-term disease. Results were mixed and some benefits were short-lived. Nevertheless, these results suggest that group work should be more widely used in the management and support of adults with long-term illness. There is a need for larger and better-quality studies to explore this potentially important area further.

Making sense of bodily sensations: Do shared cancer narratives influence symptom appraisal?

Though new or altered bodily sensations are a common occurrence they rarely transition to biomedically defined symptoms. When they do, sensations are subject to an appraisal process that can culminate in help-seeking. The transition has particular relevance for cancer diagnoses. Studies of 'symptom appraisal' in cancer patients typically conclude that failure to regard sensations as serious or 'symptom misattribution' results in lengthier help-seeking intervals. Though multiple influences on appraisal processes are acknowledged, including the socio-cultural context, detailed description and analyses of how socio-cultural factors shape appraisal is lacking. In this paper we explore one substantial component of the sociocultural context, namely, publicly recognised shared cancer narratives, and their impact on appraisal. We undertook a secondary analysis of 24 interviews with Scottish colorectal cancer patients originally completed in 2006-2007. Our analysis showed that fear, death and severity dominated cancer narratives and were frequently restated throughout interviews. Yet, early bodily changes were often mild and vague, were commonly experienced in the context of 'feeling well' and failed to match preconceived ideas of what cancer 'feels like'. Moreover, few perceived themselves to be 'at risk' of cancer and diagnoses were characterised as 'shocking' events. Participants engaged in self-monitoring strategies and severe or painful changes prompted help-seeking. Far from misattributing symptoms, responses to bodily changes were sensible and measured; responses are particularly apt in relation to current policy rhetoric, which urges measured use of services. Our findings have resonance across healthcare settings as patients are required to negotiate a narrow and challenging space when making decisions to seek help. There is a pressing need for a more realistic approach to symptom appraisal in order to reduce help-seeking intervals. Future awareness campaigns should emphasise the importance of vague/minor bodily changes although this will necessitate discussions with health professionals on referral thresholds to achieve earlier detection.

Disease-related factors affecting timely lymphoma diagnosis: a qualitative study exploring patient experiences.

BACKGROUND: Expediting cancer diagnosis is widely perceived as one way to improve patient outcomes. Evidence indicates that lymphoma diagnosis is often delayed, yet understanding of issues influencing this is incomplete. AIM: To explore patients' and their relatives' perceptions of disease-related factors affecting time to diagnosis of Hodgkin and non-Hodgkin lymphoma. DESIGN AND SETTING: Qualitative UK study involving patients with indolent and aggressive lymphomas, and their relatives, from an established population-based cohort in the north of England. METHOD: Semi-structured interviews with 35 patients and 15 of their relatives. Interviews were audiorecorded and transcribed, and qualitative descriptive analysis was undertaken. RESULTS: Participant accounts suggest that certain features of lymphoma can impact on patients' and healthcare providers' (HCPs) responses to disease onset. Three characteristics stand out: disease occurrence (rare), manifestation (varied), and investigative options (often inconclusive). Interviewees described how they, and some HCPs, lacked familiarity with lymphoma, seldom considering it a likely explanation for their symptoms. Symptoms reported were highly variable, frequently non-specific, and often initially thought to be associated with various benign, self-limiting causes. Blood tests and other investigations, while frequently able to detect abnormalities, did not reliably indicate malignancy. Interviewees reported the potential for improvements among HCPs in information gathering, communication of uncertainty, and re-presentation advice for non-resolving/progressive health changes. CONCLUSION: This study demonstrates the complex characteristics of lymphoma, perceived by patients as prolonging time to diagnosis, often despite significant effort by themselves, their relatives, and HCPs to expedite this process. The findings also illustrate why simple solutions to delayed diagnosis of lymphoma are lacking.