A randomised controlled trial of a digital intervention (Renewed) to support symptom management, wellbeing and quality of life in cancer survivors.

BACKGROUND: Many cancer survivors following primary treatment have prolonged poor quality of life. AIM: To determine the effectiveness of a bespoke digital intervention to support cancer survivors. DESIGN: Pragmatic parallel open randomised trial. SETTING: UK general practices. METHODS: People having finished primary treatment (<= 10 years previously) for colo-rectal, breast or prostate cancers, with European-Organization-for-Research-and-Treatment-of-Cancer QLQ-C30 score <85, were randomised by online software to: 1)detailed 'generic' digital NHS support ('LiveWell';n=906), 2) a bespoke complex digital intervention ('Renewed';n=903) addressing symptom management, physical activity, diet, weight loss, distress, or 3) 'Renewed-with-support' (n=903): 'Renewed' with additional brief email and telephone support. RESULTS: Mixed linear regression provided estimates of the differences between each intervention group and generic advice: at 6 months (primary time point: n's respectively 806;749;705) all groups improved, with no significant between-group differences for EORTC QLQ-C30, but global health improved more in both intervention groups. By 12 months there were: small improvements in EORTC QLQ-C30 for Renewed-with-support (versus generic advice: 1.42, 95% CIs 0.33-2.51); both groups improved global health (12 months: renewed: 3.06, 1.39-4.74; renewed-with-support: 2.78, 1.08-4.48), dyspnoea, constipation, and enablement, and lower NHS costs (generic advice £265: in comparison respectively £141 (153-128) and £77 (90-65) lower); and for Renewed-with-support improvement in several other symptom subscales. No harms were identified. CONCLUSION: Cancer survivors quality of life improved with detailed generic online support. Robustly developed bespoke digital support provides limited additional short term benefit, but additional longer term improvement in global health enablement and symptom management, with substantially lower NHS costs.

A feasibility study of a psycho-educational support intervention for men with prostate cancer on active surveillance.

BACKGROUND: PROACTIVE 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. AIMS: We conducted a feasibility study to determine the practicality of delivering PROACTIVE at two prostate cancer centres. METHODS AND RESULTS: The 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. CONCLUSIONS: Due 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.

Specialist call handlers' perspectives on providing help on a cancer helpline: A qualitative interview study.

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.

Renewed: Protocol for a randomised controlled trial of a digital intervention to support quality of life in cancer survivors.

INTRODUCTION: Low quality of life is common in cancer survivors. Increasing physical activity, improving diet, supporting psychological well-being and weight loss can improve quality of life in several cancers and may limit relapse. The aim of the randomised controlled trial outlined in this protocol is to examine whether a digital intervention (Renewed), with or without human support, can improve quality of life in cancer survivors. Renewed provides support for increasing physical activity, managing difficult emotions, eating a healthier diet and weight management. METHODS AND ANALYSIS: A randomised controlled trial is being conducted comparing usual care, access to Renewed or access to Renewed with brief human support. Cancer survivors who have had colorectal, breast or prostate cancer will be identified and invited through general practice searches and mail-outs. Participants are asked to complete baseline measures immediately after screening and will then be randomised to a study group; this is all completed on the Renewed website. The primary outcome is quality of life measured by the European Organization for Research and Treatment of Cancer QLQ-c30. Secondary outcomes include anxiety and depression, fear of cancer recurrence, general well-being, enablement and items relating to costs for a health economics analysis. Process measures include perceptions of human support, intervention usage and satisfaction, and adherence to behavioural changes. Qualitative process evaluations will be conducted with patients and healthcare staff providing support. ETHICS AND DISSEMINATION: The trial has been approved by the NHS Research Ethics Committee (Reference 18/NW/0013). The results of this trial will be published in peer-reviewed journals and through conference presentations. TRIAL REGISTRATION NUMBER: ISRCTN96374224; Pre-results.

Decision-making for people with dementia and advanced kidney disease: a secondary qualitative analysis of interviews from the Conservative Kidney Management Assessment of Practice Patterns Study.

OBJECTIVE: To explore dialysis decision-making for adults who lack capacity due to cognitive impairment, a common and under-recognised condition in those with advanced chronic kidney disease (CKD). DESIGN: Secondary analysis of qualitative data collected during the Conservative Kidney Management Assessment of Practice Patterns Study programme of research was performed. Sixty semistructured interviews were conducted with multiprofessional team members from UK renal centres. Staff were asked about local facilities, the value of conservative kidney management (CKM), when and with whom CKM was discussed and how CKM could be improved. Thematic analysis was employed to identify, characterise and report on themes that emerged from the data, focused on the specific issues experienced by people with dementia. SETTING: A purposive sample of nine UK renal centres differing in the scale of their CKM programmes. PARTICIPANTS: Clinical directors of renal centres identified staff involved in CKM. Staff were asked to participate if they had experience of low clearance clinics or of caring for patients with advanced CKD (estimated glomerular filtration rate <20mL/min/1.732 or >65 years with end-stage kidney disease). RESULTS: Two overarching themes were identified: factors taken into consideration during decision-making, and the process of decision-making itself. Comorbidity, social support, quality of life and the feasibility of dialysis were reported as factors pertinent to clinicians' decisions regarding suitability. The majority of renal centres practised multidisciplinary 'best interests' decision-making for those without capacity. Attitudes to advance care planning were divided. CONCLUSIONS: In view of the prevalence of cognitive impairment among those with advanced CKD, we suggest consideration of routine assessment of cognition and capacity. In the UK, dialysis is initiated and continued for individuals with dementia and services should be adapted to meet the needs of this population.

Assessing Consensus Between UK Renal Clinicians on Listing for Kidney Transplantation: A Modified Delphi Study.

BACKGROUND: It is well recognized that there is significant variation between centers in access to kidney transplantation. In the absence of high-grade evidence, it is unclear whether variation is due to patient case mix, other center factors, or individual clinician decisions. This study sought consensus between UK clinicians on factors that should influence access to kidney transplantation. METHODS: As part of the Access to Transplantation and Transplant Outcome Measures project, consultant nephrologists and transplant surgeons in 71 centers were invited to participate in a Delphi study involving 2 rounds. During rounds 1 and 2, participants rated their agreement to 29 statements covering 8 topics regarding kidney transplantation. A stakeholder meeting was used to discuss statements of interest after the 2 rounds. RESULTS: In total, 122 nephrologists and 16 transplant surgeons from 45 units participated in rounds 1 and 2. After 2 rounds, 12 of 29 statements reached consensus. Fifty people participated in the stakeholder meeting. After the stakeholder meeting, a further 4 statements reached agreement. Of the 8 topics covered, consensus was reached in 6: use of a transplant protocol, patient age, body mass index, patient compliance with treatment, cardiac workup, and use of multidisciplinary meetings. Consensus was not reached on screening for malignancy and use of peripheral Doppler studies. CONCLUSIONS: The Delphi process identified factors upon which clinicians agreed and areas where consensus could not be achieved. The findings should inform national guidelines to support decision making in the absence of high quality evidence and to guide areas that warrant future research.

A descriptive survey of cancer helplines in the United Kingdom: Who they are, the services offered, and the accessibility of those services.

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.

Understanding cost of care for patients on renal replacement therapy: looking beyond fixed tariffs.

BACKGROUND: In a number of countries, reimbursement to hospitals providing renal dialysis services is set according to a fixed tariff. While the cost of maintenance dialysis and transplant surgery are amenable to a system of fixed tariffs, patients with established renal failure commonly present with comorbid conditions that can lead to variations in the need for hospitalization beyond the provision of renal replacement therapy. METHODS: Patient-level cost data for incident renal replacement therapy patients in England were obtained as a result of linkage of the Hospital Episodes Statistics dataset to UK Renal Registry data. Regression models were developed to explore variations in hospital costs in relation to treatment modality, number of years on treatment and factors such as age and comorbidities. The final models were then used to predict annual costs for patients with different sets of characteristics. RESULTS: Excluding the cost of renal replacement therapy itself, inpatient costs generally decreased with number of years on treatment for haemodialysis and transplant patients, whereas costs for patients receiving peritoneal dialysis remained constant. Diabetes was associated with higher mean annual costs for all patients irrespective of treatment modality and hospital setting. Age did not have a consistent effect on costs. CONCLUSIONS: Combining predicted hospital costs with the fixed costs of renal replacement therapy showed that the total cost differential for a patient continuing on dialysis rather than receiving a transplant is considerable following the first year of renal replacement therapy, thus reinforcing the longer-term economic advantage of transplantation over dialysis for the health service.

A quantitative analysis of the prevalence of clinical depression and anxiety in patients with prostate cancer undergoing active surveillance.

OBJECTIVE: To quantitatively determine the prevalence of anxiety and depression in men on active surveillance (AS). DESIGN: Cross-sectional questionnaire survey. SETTING: Secondary care prostate cancer (PCa) clinics across South, Central and Western England. PARTICIPANTS: 313 men from a total sample of 426 with a histological diagnosis of PCa currently managed with AS were identified from seven UK urology departments. The mean age of respondents was 70 (51-86) years with the majority (76%) being married or in civil partnerships. 94% of responders were of white British ethnicity. PRIMARY OUTCOME MEASURES: The prevalence of clinically meaningful depression and anxiety as assessed by the Hospital Anxiety and Depression Scale (HADS; score ≥8/21). SECONDARY OUTCOME MEASURES: Patient demographic data (age, employment, relationship, ethnic and educational status). Each demographic variable was cross-tabulated against patients identified as depressed or anxious to allow for the identification of variables that were significantly associated with depression and anxiety. In order to determine predictors for depression and anxiety among the demographic variables, logistic regression analyses were conducted, with p<0.05 considered as indicating statistical significance. RESULTS: The prevalence of clinical anxiety and depression as determined via the HADS (HADS ≥8) was 23% (n=73) and 12.5% (n=39), respectively. Published data from men in the general population of similar age has shown prevalence rates of 8% and 6%, respectively, indicating a twofold increase in depression and a threefold increase in anxiety among AS patients. Our findings also suggest that AS patients experience substantially greater levels of anxiety than patients with PCa treated radically. The only demographic predictor for anxiety or depression was divorce. CONCLUSIONS: Patients with PCa managed with AS experienced substantially higher rates of anxiety and depression than that expected in the general population. Strategies to address this are needed to improve the management of this population and their quality of life.

Closing calls to a cancer helpline: Expressions of caller satisfaction.

OBJECTIVE: This study provides an alternative approach to assessing caller satisfaction focussing on how callers express their appreciation of the service provided during the call, as the calls draw to a close. METHODS: Conversation analysis is used to analyse 99 calls between callers and cancer specialist nurses on a leading cancer helpline in the UK. RESULTS: Caller satisfaction is expressed through upgraded forms of the appreciations through which callers begin to close the call. Dissatisfaction is conveyed in what are by comparison with expressions of satisfaction, downgraded forms which acknowledge but do not fully or enthusiastically appreciate the information/advice given. With latter calls, nurses begin to 're-open' aspects of information/advice giving, thereby leading to more protracted call closings. CONCLUSION: Endogenous indicators of caller satisfaction are displayed through callers' upgraded appreciations in the closing moments of helpline calls. Difficulties in terminating calls (protracted by nurses re-opening information-giving etc.) arise when callers do not convey their satisfaction with the service provided. PRACTICE IMPLICATIONS: An understanding of endogenous indicators of satisfaction may benefit helpline organisations and further their understanding of effective call-handling, particularly through identifying the features common to those calls in which callers do not display their satisfaction with the call.

Mindfulness for the self-management of fatigue, anxiety, and depression in women with metastatic breast cancer: a mixed methods feasibility study.

The impact of living with metastatic breast cancer (MBC) is considerable and psychosocial support can be beneficial. Mindfulness-based stress reduction (MBSR) can help self-management of anxiety, depression, quality of life (QoL), and fatigue and has been evaluated in early-stage breast cancer but not MBC. This study investigated the acceptability and feasibility of providing MBSR for women with MBC and of introducing MBSR into a National Health Service (NHS) setting. A mixed methods convergent design was used. Eligible women with MBC, an Eastern Cooperative Oncology Group (ECOG) score of 0 to 2, stable disease, and life expectancy of at least 6 months were invited to attend (by their oncologist) an 8-week MBSR course. Qualitative interviews with patients, a focus group, and interview with NHS staff were held to explore acceptability and feasibility of MBSR. Questionnaires at baseline, during (weeks 4, 8), and after (weeks 16, 24) the course measured fatigue, anxiety and depression, mindfulness, disease-specific QoL, and generic preference based QoL. Of 100 women approached, 20 joined the study. One woman dropped out prior to the intervention due to illness progression. Nineteen women took part in 3 MBSR courses. Recruitment to 2 of the 3 courses was slow. Commitment to 8 weeks was a reason for non-participation, and proved challenging to participants during the course. Participants found the course acceptable and reported many cumulative and ongoing benefits. These included feeling less reactive to emotional distress and more accepting of the disruption to life that occurs with living with MBC. There was high attendance, completion of course sessions, adherence to home practice, excellent follow-up rates, and high questionnaire return rates. MBSR was acceptable to MBC patients, who perceived benefits such as improved anxiety and QoL; but the MBSR course requires a considerable time commitment. There is scope to tailor the intervention so that it is less intensive.

Depression and anxiety in prostate cancer: a systematic review and meta-analysis of prevalence rates.

OBJECTIVES: To systematically review the literature pertaining to the prevalence of depression and anxiety in patients with prostate cancer as a function of treatment stage. DESIGN: Systematic review and meta-analysis. PARTICIPANTS: 4494 patients with prostate cancer from primary research investigations. PRIMARY OUTCOME MEASURE: The prevalence of clinical depression and anxiety in patients with prostate cancer as a function of treatment stage. RESULTS: We identified 27 full journal articles that met the inclusion criteria for entry into the meta-analysis resulting in a pooled sample size of 4494 patients. The meta-analysis of prevalence rates identified pretreatment, on-treatment and post-treatment depression prevalences of 17.27% (95% CI 15.06% to 19.72%), 14.70% (95% CI 11.92% to 17.99%) and 18.44% (95% CI 15.18% to 22.22%), respectively. Pretreatment, on-treatment and post-treatment anxiety prevalences were 27.04% (95% CI 24.26% to 30.01%), 15.09% (95% CI 12.15% to 18.60%) and 18.49% (95% CI 13.81% to 24.31%), respectively. CONCLUSIONS: Our findings suggest that the prevalence of depression and anxiety in men with prostate cancer, across the treatment spectrum, is relatively high. In light of the growing emphasis placed on cancer survivorship, we consider that further research within this area is warranted to ensure that psychological distress in patients with prostate cancer is not underdiagnosed and undertreated.

The role of helplines in cancer care: intertwining emotional support with information or advice-seeking needs.

Helplines are core feature of the contemporary U.K. health care system, however little is known about callers' experiences of seeking cancer-related telephone help. Qualitative interviews were conducted with 32 cancer helpline callers. The findings suggest cancer helplines offer callers (1) time to discuss their issues, (2) anonymity, (3) convenience, and (4) an open outlet for anyone affected by cancer including family/friends. Further, the findings highlighted that callers' help-seeking behavior was multifaceted, with their psychosocial needs being intrinsically intertwined with their information or advice-seeking needs. The implications are discussed in relation to the role of cancer helplines in the healthcare system.

Improving ethnic monitoring for telephone-based healthcare: a conversation analytic study.

OBJECTIVES: Medical and healthcare organisations-including the national cancer support and helpline organisation that is the subject of this study-are expected to collect and monitor information about the ethnicity of their client populations. Information about ethnicity is important for a variety of reasons, including monitoring need and targeting healthcare services appropriately. Previous survey and interview research has suggested that collecting ethnicity data from service users can be incomplete and of variable quality-pointing to a need for an improved understanding of the (interactional) difficulties involved when call-handlers ask callers about their ethnicity. DESIGN: This study analyses a corpus of real-life audio-recorded calls to a national cancer helpline in the UK, focusing on the way that call-handlers collect the ethnic monitoring data. SETTING: A major national cancer helpline in the UK. PARTICIPANTS: A sample of 273 recorded calls were recorded, of which 267 were frontline calls in which call-handlers are expected to ask the ethnicity monitoring question. RESULTS: Findings suggest that caller uncertainty about how to answer the question, resistance to answering and call-handler presumption can compromise the effectiveness of ethnic monitoring. It is likely to be improved by changing how the ethnicity monitoring question is asked. Changes include avoiding open question formats to ease caller uncertainty; offering callers a rationale (account) for the question to minimise resistance and confirming the accuracy of the ethnic category recorded. CONCLUSIONS: We recommend that telephone-based healthcare personnel avoid asking the ethnicity monitoring question in an 'open' format; instead, a question containing a (short) standardised list can assist callers in responding. A training tool has been developed that applies this and other findings, with a view to improving ethnic monitoring.

"How can I help?" Nurse call openings on a cancer helpline and implications for call progressivity.

OBJECTIVE: Helplines are a key service used for information and support by people affected by cancer. Little is known about the process of delivering and seeking cancer related telephone help. METHODS: Using conversation analysis 52 calls between callers and specialist nurses on a major UK cancer helpline are analysed; focusing on the openings of helpline calls by specialist nurses. The helpline involves a triage system from a frontline call-taker to a specialist nurse. RESULTS: The triage system introduces challenges to the interactions for nurses and callers. This paper demonstrates how calls commence, and outlines implications for how they progress. Four key elements to the nurse's initial opening of the call were identified, which together contribute to managing an effective transition from the frontline call-taker to the current call with the specialist cancer nurse. CONCLUSION: The smooth exchange of information and provision of support in a trusted call environment is a critical goal of the cancer helpline; an effective call opening in a triage environment may significantly optimise the possibility of this goal being realised. PRACTICE IMPLICATIONS: A simple strategy is recommended to avoid the difficulties identified, a script for how the triaged call openings may be optimally formulated.

Eliciting symptoms interpreted as normal by patients with early-stage lung cancer: could GP elicitation of normalised symptoms reduce delay in diagnosis? Cross-sectional interview study.

OBJECTIVES: To investigate why symptoms indicative of early-stage lung cancer (LC) were not presented to general practitioners (GPs) and how early symptoms might be better elicited within primary care. DESIGN, SETTING AND PARTICIPANTS: A qualitative cross-sectional interview study about symptoms and help-seeking in 20 patients from three south England counties, awaiting resection of LC (suspected or histologically confirmed). Analysis drew on principles of discourse analysis and constant comparison to identify processes involved in interpretation and communication about symptoms, and explain non-presentation. RESULTS: Most participants experienced health changes possibly indicative of LC which had not been presented during GP consultations. Symptoms that were episodic, or potentially caused by ageing or lifestyle, were frequently not presented to GPs. In interviews, open questions about health changes/symptoms in general did not elicit these symptoms; they only emerged in response to closed questions detailing specific changes in health. Questions using disease-related labels, for example, pain or breathlessness, were less likely to elicit symptoms than questions that used non-disease terminology, such as aches, discomfort or 'getting out of breath'. Most participants described themselves as feeling well and were reluctant to associate potentially explained, non-specific or episodic symptoms with LC, even after diagnosis. CONCLUSIONS: Patients with early LC are unlikely to present symptoms possibly indicative of LC that they associate with normal processes, when attending primary care before diagnosis. Faced with patients at high LC risk, GPs will need to actively elicit potential LC symptoms not presented by the patient. Closed questions using non-disease terminology might better elicit normalised symptoms.

Hospital admissions from nursing homes: a qualitative study of GP decision making.

BACKGROUND: Decisions regarding the hospitalisation of nursing home residents may present a difficult dilemma for GPs. There are pressures to admit very frail patients with exacerbations of illness even though such frailty may limit the possible health gains. As 'gatekeepers' to NHS, GPs are expected to make best use of resources and may be criticised for 'inappropriate' admissions. Little is understood about the influences on GPs as they make such decisions. AIM: To explore GPs views on factors influencing decisions on admitting frail nursing home residents to hospital. DESIGN AND SETTING: A purposive sample of 21 GPs from two counties in the South of England. METHOD: Data from semi-structured, one-to-one interviews with GPs were analysed using thematic analysis following principles of the constant comparative method. RESULTS: This study suggests that while clinical assessment, perceived benefits and risks of admission, and patients' and relatives' preferences are key factors in determining admissions, other important factors influencing decision making include medico-legal concerns, communications, capability of nursing homes and GP workload. These factors were also perceived by GPs as influencing the feasibility of keeping patients in the nursing home when this was clinically appropriate. Key areas suggested by GPs to improve practice were improving communication (particularly informational continuity), training and support for nursing staff, and peer support for GPs. Local initiatives to address these issues were very variable. CONCLUSION: Developing a systematic palliative care approach to address poor documentation and communication, the capability of nursing homes, and medico-legal concerns has the potential to improve decision-making regarding hospital admissions.

'What matters to me': an international online survey of people treating, affected by and living with lung cancer.

AIM: Lung cancer is a common malignancy that occurs worldwide and generally has a poor prognosis. Its diagnosis presents significant physical and emotional challenges for patients and their family, friends and caregivers (FFCs). This study aimed to gain insights into patients' and FFCs' perspectives regarding lung cancer and its treatment, as well as physicians' perceptions of patients' thoughts about their illness. PATIENTS & METHODS: An international online survey was conducted, assessing 113 patients diagnosed with non-small-cell lung cancer, 70 corresponding FFCs and 188 treating physicians. Data were collected using an interactive internet-based tool, in order to establish respondents' priorities. RESULTS: Interesting differences between patients', FFCs' and physicians' perspectives on lung cancer were revealed. For all respondents, the primary feeling about lung cancer was described as "sadness". Patients were more likely to express a determination to be positive, whereas fear was a common response for FFCs and was a perspective also reported by physicians. Physicians' views on how they had communicated disease information were more positive than those of the patients, with many patients detecting physician hesitancy to communicate negative news. CONCLUSION: This study provides important insights into the self-reported thoughts and feelings of patients with lung cancer, their personal networks of FFCs and the physicians who care for them.

Communication challenges of HPV vaccination.

BACKGROUND: The UK has introduced a national human papillomavirus (HPV) immunisation programme for girls aged 12-13 from autumn 2008. Previous research has explored public understanding of the causes of cervical cancer and found little awareness of the role of HPV. OBJECTIVE: To explore GPs' and practice nurses' views of HPV vaccination, prior to implementation of the national immunisation programme, with a focus on their role and anticipated difficulties. METHODS: Qualitative semi-structured interviews were conducted with 17 GPs and practice nurses from practices in Hampshire and Wiltshire, in March 2008. RESULTS: The prevailing theme of new communication challenges was identified and these were connected to the activities of (i) explaining, (ii) consenting and (iii) managing conflicts between parents and their children with respect to vaccination decisions. The importance of decisions being fully informed was emphasized and concern was expressed about the adequacy of the information provided to girls and their parents in schools. Whether consent would be granted by the parent or by the child and how potential disagreements should be managed remained ambiguous. Participants considered it appropriate to offer the vaccine without parental consent if other criteria, such as an assessment of competency, were met. CONCLUSIONS: Success of the national immunization programme will depend on overcoming the challenges of providing explanations to ensure that individuals understand the potential benefits of HPV vaccination. Primary care can play an important role, but this study suggests there are fundamental issues that need further clarification.

'Yours is potentially serious but most of these are cured': optimistic communication in UK outpatient oncology consultations.

OBJECTIVE: To describe how experienced doctors discuss radiotherapy and chemotherapy with cancer patients about to undergo such treatment. METHODS: Qualitative analysis of 27 consultations( )between consultant oncologists and patients with breast, head, and neck cancer or gastrointestinal cancer. Set in outpatient oncology clinics: one in the South West, one in the Midlands, and a large London teaching hospital. Participants included three experienced consultant oncologists and 27 patients diagnosed with cancer attending outpatient oncology consultations to discuss radiotherapy or chemotherapy. RESULTS: Doctors repeatedly invoked optimism when discussing bad and uncertain information about radiotherapy and chemotherapy. This was achieved by following relatively bad or uncertain information with some good information. Patients tended to collaborate in the construction of optimism. CONCLUSIONS: Doctors talked optimistically while sharing information about chemotherapy and radiotherapy with patients about to undergo such treatment. Research indicates that patients want their doctors to openly share bad and uncertain information, but to do so sensitively. Following uncertain or bad tidings with relatively better news was one way in which doctors delivered information honestly without diminishing opportunities for hope in the consultation room or optimism about the future. Findings from qualitative empirical studies, such as that described, provide a valuable educational adjunct to the role play and simulated patient interactions, often used in conventional communication skills training and research.