Background Pancreatic cystic neoplasms (PCN) are considered premalignant conditions to pancreatic adenocarcinoma with varying degrees of cancerous potential. Management for individuals who do not require surgical treatment involves surveillance to assess for cancerous progression. Little is known about patients’ experience and the impact of living with surveillance for these lesions.Aims To explore the experiences of patients living with surveillance for PCNs.Methods Semi-structured qualitative interviews were conducted with patients under surveillance for pancreatic cystic neoplasms in the UK. Age, gender, time from surveillance and surveillance method were used to purposively sample the patient group. Data were analysed using reflexive thematic analysis.Results A PCN diagnosis is incidental and unexpected and for some, the beginning of a disruptive experience. How patients make sense of their PCN diagnosis is influenced by their existing understanding of pancreatic cancer, explanations from clinicians and the presence of coexisting health concerns. A lack of understanding of the diagnosis and its meaning for their future led to an overarching theme of uncertainty for the PCN population. Surveillance for PCN could be seen as a reminder of fears of PCN and cancer, or as an opportunity for reassurance.Conclusions Currently, individuals living with surveillance for PCNs experience uncertainty with a lack of support in making sense of a prognostically uncertain diagnosis with no immediate treatment. More research is needed to identify the needs of this population to make improvements to patient care and reduce negative experiences.
Concepts of patient-centredness and shared decision-making inform expectations that clinicians should display sensitivity to patients' expressed preferences. This study examines the organisation of treatment-related preferences expressed by patients and their partners during clinical consultations for people with localised prostate cancer. A conversation analysis of twenty-eight diagnosis and treatment consultations was conducted with data recorded from four clinical sites across England. When clinicians disaligned from expressions of preference such as directing talk away from expressions, or moving to redress perceived misunderstandings, it caused discordance in the unfolding interaction. This led to couples silencing themselves. Two deviant cases were identified that did not feature the misalignment found in all other collected cases. In these two cases, the interaction remained collaborative. These findings highlight the immediate consequences of expressions of preference being resisted, rejected, and dismissed in a context where clinicians are expected to explore expressed preferences in service of SDM. The deviant case analysis offers an alternative practice to the pattern observed across the collection, offering a comparison between misaligned sequences, and cases where social solidarity was maintained. By acknowledging couple's expressions as valid contributions, rather than acting to inform or correct them, clinicians can create opportunity spaces for discussion around treatment preferences.
Introduction: NICE (CG164; 2019) recommends use of computer programmes to determine breast cancer familial risk. It is felt that IBIS (through FaHRAS interface) as used in our family history clinics estimates higher risk than BOADICEA (through CanRisk) used by our Genetics team. This evaluation compares risk estimates provided through both.
Objective: This research examines how partners contribute to clinical consultations for people with prostate cancer. It highlights a social practice where a partner responds to talk that addresses a patient. Methods: A conversation analysis of twenty-eight prostate cancer treatment and diagnostic consultations was carried out using data collected from four clinical sites across England. Results: The analysis demonstrated that this practice was prosocial and patient enabling. Partners oriented to the patient's primary rights to take their turn as the selected next speaker, only initiating after a substantial delay from the clinician's turn-at-talk. Consequently, the partner consistently opened an opportunity space that the patient took to elaborate upon, or collaborate with the partners' turn as they regularly took up a unified stance resisting the individualised configuration of the encounter. Conclusion: This research highlights the social and clinical utility of partners during these consultations, as they served as important, yet underutilised interactional and informational resources for clinicians and patients. Practice implications: This research indicates a need to reconsider the configuration of these consultations and sanction partners as formal participants. Absent of this, partners will continue to have to work to insert their contributions into consultations while resisting the dyadic structure of these interactions.
Introduction Dynamic contrast-enhanced CT (DCE-CT) and positron emission tomography/CT (PET/CT) have a high reported accuracy for the diagnosis of malignancy in solitary pulmonary nodules (SPNs). The aim of this study was to compare the accuracy and cost-effectiveness of these. Methods In this prospective multicentre trial, 380 participants with an SPN (8–30 mm) and no recent history of malignancy underwent DCE-CT and PET/CT. All patients underwent either biopsy with histological diagnosis or completed CT follow-up. Primary outcome measures were sensitivity, specificity and overall diagnostic accuracy for PET/CT and DCE-CT. Costs and cost-effectiveness were estimated from a healthcare provider perspective using a decision-model. Results 312 participants (47% female, 68.1±9.0 years) completed the study, with 61% rate of malignancy at 2 years. The sensitivity, specificity, positive predictive value and negative predictive values for DCE-CT were 95.3% (95% CI 91.3 to 97.5), 29.8% (95% CI 22.3 to 38.4), 68.2% (95% CI 62.4% to 73.5%) and 80.0% (95% CI 66.2 to 89.1), respectively, and for PET/CT were 79.1% (95% CI 72.7 to 84.2), 81.8% (95% CI 74.0 to 87.7), 87.3% (95% CI 81.5 to 91.5) and 71.2% (95% CI 63.2 to 78.1). The area under the receiver operator characteristic curve (AUROC) for DCE-CT and PET/CT was 0.62 (95% CI 0.58 to 0.67) and 0.80 (95% CI 0.76 to 0.85), respectively (p<0.001). Combined results significantly increased diagnostic accuracy over PET/CT alone (AUROC=0.90 (95% CI 0.86 to 0.93), p<0.001). DCE-CT was preferred when the willingness to pay per incremental cost per correctly treated malignancy was below £9000. Above £15 500 a combined approach was preferred. Conclusions PET/CT has a superior diagnostic accuracy to DCE-CT for the diagnosis of SPNs. Combining both techniques improves the diagnostic accuracy over either test alone and could be cost-effective. Trial registration number NCT02013063
BACKGROUND:Current pathways recommend positron emission tomography-computerised tomography for the characterisation of solitary pulmonary nodules. Dynamic contrast-enhanced computerised tomography may be a more cost-effective approach. OBJECTIVES:To determine the diagnostic performances of dynamic contrast-enhanced computerised tomography and positron emission tomography-computerised tomography in the NHS for solitary pulmonary nodules. Systematic reviews and a health economic evaluation contributed to the decision-analytic modelling to assess the likely costs and health outcomes resulting from incorporation of dynamic contrast-enhanced computerised tomography into management strategies. DESIGN:Multicentre comparative accuracy trial. SETTING:Secondary or tertiary outpatient settings at 16 hospitals in the UK. PARTICIPANTS:Participants with solitary pulmonary nodules of ≥ 8 mm and of ≤ 30 mm in size with no malignancy in the previous 2 years were included. INTERVENTIONS:Baseline positron emission tomography-computerised tomography and dynamic contrast-enhanced computer tomography with 2 years' follow-up. MAIN OUTCOME MEASURES:Primary outcome measures were sensitivity, specificity and diagnostic accuracy for positron emission tomography-computerised tomography and dynamic contrast-enhanced computerised tomography. Incremental cost-effectiveness ratios compared management strategies that used dynamic contrast-enhanced computerised tomography with management strategies that did not use dynamic contrast-enhanced computerised tomography. RESULTS:A total of 380 patients were recruited (median age 69 years). Of 312 patients with matched dynamic contrast-enhanced computer tomography and positron emission tomography-computerised tomography examinations, 191 (61%) were cancer patients. The sensitivity, specificity and diagnostic accuracy for positron emission tomography-computerised tomography and dynamic contrast-enhanced computer tomography were 72.8% (95% confidence interval 66.1% to 78.6%), 81.8% (95% confidence interval 74.0% to 87.7%), 76.3% (95% confidence interval 71.3% to 80.7%) and 95.3% (95% confidence interval 91.3% to 97.5%), 29.8% (95% confidence interval 22.3% to 38.4%) and 69.9% (95% confidence interval 64.6% to 74.7%), respectively. Exploratory modelling showed that maximum standardised uptake values had the best diagnostic accuracy, with an area under the curve of 0.87, which increased to 0.90 if combined with dynamic contrast-enhanced computerised tomography peak enhancement. The economic analysis showed that, over 24 months, dynamic contrast-enhanced computerised tomography was less costly (£3305, 95% confidence interval £2952 to £3746) than positron emission tomography-computerised tomography (£4013, 95% confidence interval £3673 to £4498) or a strategy combining the two tests (£4058, 95% confidence interval £3702 to £4547). Positron emission tomography-computerised tomography led to more patients with malignant nodules being correctly managed, 0.44 on average (95% confidence interval 0.39 to 0.49), compared with 0.40 (95% confidence interval 0.35 to 0.45); using both tests further increased this (0.47, 95% confidence interval 0.42 to 0.51). LIMITATIONS:The high prevalence of malignancy in nodules observed in this trial, compared with that observed in nodules identified within screening programmes, limits the generalisation of the current results to nodules identified by screening. CONCLUSIONS:Findings from this research indicate that positron emission tomography-computerised tomography is more accurate than dynamic contrast-enhanced computerised tomography for the characterisation of solitary pulmonary nodules. A combination of maximum standardised uptake value and peak enhancement had the highest accuracy with a small increase in costs. Findings from this research also indicate that a combined positron emission tomography-dynamic contrast-enhanced computerised tomography approach with a slightly higher willingness to pay to avoid missing small cancers or to avoid a 'watch and wait' policy may be an approach to consider. FUTURE WORK:Integration of the dynamic contrast-enhanced component into the positron emission tomography-computerised tomography examination and the feasibility of dynamic contrast-enhanced computerised tomography at lung screening for the characterisation of solitary pulmonary nodules should be explored, together with a lower radiation dose protocol. STUDY REGISTRATION:This study is registered as PROSPERO CRD42018112215 and CRD42019124299, and the trial is registered as ISRCTN30784948 and ClinicalTrials.gov NCT02013063. FUNDING:This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 26, No. 17. See the NIHR Journals Library website for further project information.
Objective: To review the currently available research into romantic partner involvement during oncology consultations. Methods: Studies were identified via database searches plus hand-searching. A narrative review was performed using the principles of Thematic, and Framework syntheses. The search strategy was performed according to the principles of PRISMA. Results: From 631 results, 18 studies were included. The findings indicate that romantic partners are most valued by patients when they provide emotional, practical, and informational support. It is also indicated that psychosocial and sexual concerns are rarely discussed. Couples' self-reported satisfaction with consultations appear related to the extent of romantic partner involvement, the roles that they enacted, and the extent to which psychosocial and sexual concerns were addressed. Conclusion: This review indicates that romantic partner involvement during clinical consultations enhances the couple's experience. However, there are methodological limitations to this body of research, which are discussed in this review. Practice implications: Research to date has yet to offer an exploration of the social practices and conversational actions relating to romantic partner involvement during triadic oncology consultations. Future studies that draw upon recordings of these consultations, using methods capable of analysing situated social practices can address this gap. (C) 2020 The Author(s). Published by Elsevier B.V.
BackgroundPROACTIVE is a psycho-educational support intervention for prostate cancer patients managed on Active Surveillance. PROACTIVE is composed of two interdependent components: group workshops and internet-delivered information modules. AimsWe conducted a feasibility study to determine the practicality of delivering PROACTIVE at two prostate cancer centres. Methods and ResultsThe feasibility study was a mixed-methods randomized parallel-group exploratory trial. Participants were randomised using a ratio of 3:1 PROACTIVE group to treatment as usual. Qualitative semi-structured interviews and quantitative measures were completed at baseline, intervention completion (week 6), and at 6-month follow-up. Interview transcripts were analysed thematically using Framework analysis. Descriptive statistics were used to examine recruitment and retention rates and changing trends in outcome measures. Most aspects of the research design and PROACTIVE intervention were acceptable to those participating in the study. In particular, participants valued the opportunity to share and discuss experiences with other prostate cancer patients on Active Surveillance and receive detailed authoritative information. However, three issues were identified: (a) a low response rate (13 participants recruited, response rate 16%), (b) low utilisation of internet delivered information modules, (c) self-perceived low levels of anxiety amongst participants with the majority perceiving their cancer as not impacting on their day-to-day life or causing anxiety. ConclusionsDue to these significant research design issues, it is not recommended PROACTIVE be evaluated in a large-scale randomised controlled trial. Further research is required to explore the impact of Active Surveillance on anxiety amongst men with localized prostate cancer managed by Active Surveillance.
Objective: Explore how partners are involved in treatment-related decision-making within triadic clinical encounters. Methods: Studies were identified via database searches and reference lists. One author assessed eligibility of studies, which were verified by an additional co-author. Data were extracted by one author and crosschecked for accuracy by a second. Quality of articles was assessed using Qualsyst. Retrieved studies were categorised by one author, and agreed through discussion. Results: From 2442 records, 14 studies were included and categorised as: (1) Descriptions of partner role and behaviour; (2) Role intentions of partners; (3) Relationship between partner and patient behaviour; (4) HCP-Partner interactions. Conclusion: Partners are often involved in triadic clinical consultations that have implications for treatment-related decision making. Most studies offered general descriptions but lacked detailed investigation of communicative processes in triads and how these may operate with partners vs. other companions. Practice implications: Existing studies lack detailed investigation through direct observation of the processes of partner involvement. Research in other areas of clinical communication suggests that future interventions could be informed by attention to the following areas: partner behaviour vs. other companion types in triads; relationships between partner involvement and decision-making processes; partner involvement in triads vs. other groups (e.g. quadratic). (C) 2019 Elsevier B.V. All rights reserved.
OBJECTIVE To identify call handlers' key experiences of providing telephone help on a cancer helpline. METHODS Semi-structured qualitative interviews with 30 call handlers from three UK-based cancer helplines. Transcribed interview data were analysed thematically. RESULTS Thematic analysis identified three themes: (a) call handlers' perceptions of their role on the helpline, (b) challenges of working on a helpline and (c) the need for training/keeping up with competencies. Call handlers reported satisfaction with their experience. However, there are tensions: whilst advice is formally not part of the remit of the helpline, in practice the boundary between giving advice and giving information can be blurred. No follow-up with callers could be difficult and experienced as a lost opportunity to help. Managing patient expectations could be challenging, and interviewees described particular difficulties with distressed callers. Training for the role was commonplace, but there was sometimes a desire for more opportunities. CONCLUSION There are challenges faced by helpline staff, and it can be difficult to manage callers' distress and expectations of what they might get from a call experience. Recognising the skill and complexity of the call handler role is important, as it is meeting call handlers' support and training needs. Support is important to minimise the risk to their own emotional well-being.
Objectives: To establish: a) feasibility of training GPs in a communication intervention to solicit additional patient concerns early in the consultation, using specific lexical formulations ("do you have 'any' vs. 'some' other concerns?") noting the impact on consultation length, and b) whether patients attend with multiple concerns and whether they voiced them in the consultation. Methods: A mixed-methods three arm RCT feasibility study to assess the feasibility of the communication intervention. Results: Intervention fidelity was high. GPs can be trained to solicit additional concerns early in the consultation (once patients have presented their first concern). Whilst feasible the particular lexical variation of 'any' vs 'some' seemed to have no bearing on the number of patient concerns elicited, on consultation length or on patient satisfaction. The level of missing questionnaire data was low, suggesting patients found completion of questionnaires acceptable. Conclusion: GPs can solicit for additional concerns without increasing consultation length, but the particular wording, specifically 'any' vs. 'some' may not be as important as the placement of the GP solicitation. Practice implications: GPs can solicit early for additional concerns and GPs can establish patients' additional concerns in the opening of the consultation, which can help to plan and prioritise patients multiple concerns. (C) 2018 Published by Elsevier B.V.
Early diagnosis of lung cancer (LC) is a policy priority. However, symptoms are vague, associated with other morbidities, and frequently unrecognised by both patients and general practitioners (GPs). This qualitative study, part of a larger mixed methods study, explored GP views regarding the potential for early diagnosis of LC within primary care. Five focus group discussions (FGDs) were conducted with GPs (n = 16) at primary care practices (n = 5) across four counties in south England. FGDs were audio-recorded, transcribed verbatim and analysed using a framework approach. Four broad themes emerged: patients' reporting of symptoms; GP response to symptoms; investigating LC, and; potential initiatives for early diagnosis. GPs reported they often required high levels of suspicion to refer patients on to specialist respiratory consultations, and concerns of 'system overload' were prevalent. Greater access to more sensitive diagnostic investigations such as computed tomography, was argued for by some, particularly for symptomatic patients with negative chest X-rays. GPs challenged current approaches to promoting earlier diagnosis through national symptom awareness campaigns, arguing instead that interventions targeted at high-risk individuals might be more effective without burdening services already under pressure. Further work is needed to identify primary care patients who might most benefit from such targeted interventions.
As possibilities for the early detection of indolent cancers, and precursors to cancer, multiply, GPs will increasingly be involved in discussions with patients about risks and benefits of early diagnosis and treatment. Over time, improvements in evidence may decrease uncertainty about outcomes for patients and clinicians. However, where survival benefits are small, or uncertain, or risks are unacceptable to patients, grounds for preference-sensitive decision-making will remain. How risks and benefits of early detection, and the significance of indolent or low risk cancers, are communicated, will be key, if overtreatment and overdiagnosis are to be avoided.
Background: There are more than 1500 UK health helplines in operation, yet we have scant knowledge about the resources in place to support the seeking and delivering of cancer-related telephone help and support. This research aimed to identify and describe cancer and cancer-related helpline service provision: the number of helplines available, the variety of services provided, and the accessibility of those services.Method: This study used online national questionnaire survey sent to 95 cancer and cancer-related helplines in the United Kingdom.Results: A total of 69 (73%) of 95 surveyed cancer and cancer-related helplines completed the survey. Most helplines/organizations were registered charities, supported by donations; 73.5% of helplines had national coverage. Most helplines served all age-groups, ethnic groups, and men and women. Only 13.4% had a number that was free from landlines and most mobile networks, and 56.6% could only be contacted during working hours. More than 50% of helplines reported no provisions for callers with additional needs, and 55% had no clinical staff available to callers. Ongoing support and training for helpline staff was available but variable.Conclusion: Although cancer helplines in the United Kingdom offer reasonably broad coverage across the country, there are still potential barriers to accessibility. There are also opportunities to optimize the training of staff/volunteers across the sector. There are further prospects for helplines to enhance services and sustain appropriate and realistic quality standards.
BACKGROUND:Lung cancer symptoms are vague and difficult to detect. Interventions are needed to promote early diagnosis, however health services are already pressurised. This study explored symptomology and help-seeking behaviours of primary care patients at 'high-risk' of lung cancer (≥50 years old, recent smoking history), to inform targeted interventions. METHODS:Mixed method study with patients at eight general practitioner (GP) practices across south England. Study incorporated: postal symptom questionnaire; clinical records review of participant consultation behaviour 12 months pre- and post-questionnaire; qualitative participant interviews (n = 38) with a purposive sample. RESULTS:A small, clinically relevant group (n = 61/908, 6.7%) of primary care patients was identified who, despite reporting potential symptoms of lung cancer in questionnaires, had not consulted a GP ≥12 months. Of nine symptoms associated with lung cancer, 53.4% (629/1172) of total respondents reported ≥1, and 35% (411/1172) reported ≥2. Most participants (77.3%, n = 686/908) had comorbid conditions; 47.8%, (n = 414/908) associated with chest and respiratory symptoms. Participant consulting behaviour significantly increased in the 3-month period following questionnaire completion compared with the previous 3-month period (p = .002), indicating questionnaires impacted upon consulting behaviour. Symptomatic non-consulters were predominantly younger, employed, with higher multiple deprivation scores than their GP practice mean. Of symptomatic non-consulters, 30% (18/61) consulted ≤1 month post-questionnaire, with comorbidities subsequently diagnosed for five participants. Interviews (n = 39) indicated three overarching differences between the views of consulting and non-consulting participants: concern over wasting their own as well as GP time; high tolerance threshold for symptoms; a greater tendency to self-manage symptoms. CONCLUSIONS:This first study to examine symptoms and consulting behaviour amongst a primary care population at 'high- risk' of lung cancer, found symptomatic patients who rarely consult GPs, might respond to a targeted symptom elicitation intervention. Such GP-based interventions may promote early diagnosis of lung cancer or other comorbidities, without burdening already pressurised services.
INTRODUCTION:Solitary pulmonary nodules (SPNs) are common on CT. The most cost-effective investigation algorithm is still to be determined. Dynamic contrast-enhanced CT (DCE-CT) is an established diagnostic test not widely available in the UK currently. METHODS AND ANALYSIS:The SPUtNIk study will assess the diagnostic accuracy, clinical utility and cost-effectiveness of DCE-CT, alongside the current CT and 18-flurodeoxyglucose-positron emission tomography) (18FDG-PET)-CT nodule characterisation strategies in the National Health Service (NHS). Image acquisition and data analysis for 18FDG-PET-CT and DCE-CT will follow a standardised protocol with central review of 10% to ensure quality assurance. Decision analytic modelling will assess the likely costs and health outcomes resulting from incorporation of DCE-CT into management strategies for patients with SPNs. ETHICS AND DISSEMINATION:Approval has been granted by the South West Research Ethics Committee. Ethics reference number 12/SW/0206. The results of the trial will be presented at national and international meetings and published in an Health Technology Assessment (HTA) Monograph and in peer-reviewed journals. TRIAL REGISTRATION NUMBER:ISRCTN30784948; Pre-results.
Objective - To investigate the perspectives of general practitioners (GPs) on the practice of soliciting additional concerns (ACs) and the acceptability and utility of two brief interventions (prompts) designed to aid the solicitation. Methods - Eighteen GPs participating in a feasibility randomised controlled trial were interviewed. Interviews were semi-structured and audio-recorded. Data were analysed using a Framework Approach. Results - Participants perceived eliciting ACs as important for: reducing the need for multiple visits, identifying serious illness early, and increasing patient and GP satisfaction. GPs found the prompts easy to use and some continued their use after the study had ended to aid time management. Others noted similarities between the intervention and their usual practice. Nevertheless, soliciting ACs in every consultation was not unanimously supported. Conclusion - The prompts were acceptable to GPs within a trial context, but there was disagreement as to whether ACs should be solicited routinely. Some GPs considered the intervention to aid their prioritisation efficiency within consultations. Practice implications - Some GPs will find prompts which encourage ACs to be solicited early in the consultation enable them to better organise priorities and manage time-limited consultations more effectively.
Background: There is a growing population of older patients with End Stage Renal Disease (ESRD) managed without dialysis in Thailand, and services have yet to be developed to specifically respond to the needs of this group. As a consequence this population are likely to have unmet needs with respect to health care and suffer from symptoms that could be better managed. Objective: This qualitative study explored experiences and health care needs during the last year of life among older people with ESRD, managed without dialysis, from the perspective of bereaved carers. Methods: A retrospective post-bereavement approach was adopted to collect qualitative interview data. Purposive sampling was used to select 12 bereaved relatives of older patients with ESRD, managed without dialysis, who had died in the previous 5-10 months. Semi-structured interviews were conducted. Data were digitally recorded, transcribed and analysed through framework analysis. Results: Four main themes were identified: symptom experiences, impacts of being managed without dialysis, symptom management, and health care needs and utilisation of services. Conclusions: Findings confirmed patients' needs were not being met and identified the need to develop approaches to symptom management at home, health education, and psychological and spiritual support at the end of life.