National Cancer Diagnosis Audits for England 2018 versus 2014: a comparative analysis.

BACKGROUND: Timely diagnosis of cancer in patients who present with symptoms in primary care is a quality-improvement priority. AIM: To examine possible changes to aspects of the diagnostic process, and its timeliness, before and after publication of the National Institute for Health and Care Excellence's (2015) guidance on the referral of suspected cancer in primary care. DESIGN AND SETTING: Comparison of findings from population-based clinical audits of cancer diagnosis in general practices in England for patients diagnosed in 2018 or 2014. METHOD: GPs in 1878 (2018) and 439 (2014) practices collected primary care information on the diagnostic pathway of cancer patients. Key measures including patient characteristics, place of presentation, number of pre-referral consultations, use of primary care investigations, and referral type were compared between the two audits by descriptive analysis and regression models. RESULTS: Among 64 489 (2018) and 17 042 (2014) records of a new cancer diagnosis, the percentage of patients with same-day referral (denoted by a primary care interval of 0 days) was higher in 2018 (42.7% versus 37.7%) than in 2014, with similar improvements in median diagnostic interval (36 days versus 40 days). Compared with 2014, in 2018: fewer patients had ≥3 pre-referral consultations (18.8% versus 26.2%); use of primary care investigations increased (47.9% versus 45.4%); urgent cancer referrals increased (54.8% versus 51.8%); emergency referrals decreased (13.4% versus 16.5%); and recorded use of safety netting decreased (40.0% versus 44.4%). CONCLUSION: In the 5-year period, including the year when national guidelines were updated (that is, 2015), there were substantial improvements to the diagnostic process of patients who present to general practice in England with symptoms of a subsequently diagnosed cancer.

Impact of geography on Scottish cancer diagnoses in primary care: Results from a national cancer diagnosis audit.

BACKGROUND: A recent meta-analysis of global research found cancer patients living in rural locations are 5% less likely to survive than their urban counterparts, a survival disadvantage that has never been satisfactorily explained. AIMS: [1] To describe and compare primary-care involvement in the diagnosis of cancer between rural and urban patients in Scotland. [2] To compare the length of key diagnostic pathway intervals between rural and urban cancer patients in Scotland. METHODS: Participating GPs in the Scottish National Cancer Audit of cancer diagnosis (2017) collected data from primary-care medical records on the diagnostic pathway of patients diagnosed in 2014. Residential postcodes designated the patients as rural or urban dwellers. Key cancer diagnostic pathway intervals (primary, diagnostic, secondary, and treatment) were compared using binary logistic regression. Descriptive analysis included comparison of patient characteristics, and routes to diagnosis. RESULTS: 73 Scottish general practices provided data on 1,905 cancer diagnoses. Rural patients did not have higher odds of prolonged diagnostic intervals compared to urban patients but were significantly more likely to have had a cancer alarm feature at presentation and three or more primary-care consultations prior to referral. Rural GPs were significantly more likely to perceive an avoidable delay in their patient's diagnostic pathway. CONCLUSION: There was no evidence that rural patients were more likely to be subject to prolonged cancer diagnostic delays than urban patients. Rural patients may experience primary care differently in the lead-up to a cancer diagnosis. The effect on outcome is probably negligible, but further research is required to confirm this.

Cancer diagnosis in Scottish primary care: Results from the National Cancer Diagnosis Audit.

OBJECTIVE: To characterize cancer diagnosis in Scottish primary care and draw comparisons with cancer diagnostic activity in England. METHOD: A national audit of cancer diagnosis was conducted in Scottish and English general practices. Participating GPs collected diagnostic pathway data on patients diagnosed in 2014 from medical records. Data were supplemented by linkage to national cancer registries. Analysis explored and compared patient characteristics, diagnostic intervals, and routes to diagnosis. RESULTS: 7.7% of all Scottish general practices in 2017 provided data on 2,014 cancer diagnoses. 71.5% of cases presented to GPs and 37.4% were referred using the "Urgent-Suspected Cancer" route. The median primary care interval was 5 days (IQR 0-23 days) and median diagnostic interval was 30 days (IQR 13-68). Both varied by cancer-site. Diagnostic intervals were longer in the most remote patients and those with more comorbidities. Scottish and English samples corresponded closely in key characteristics. CONCLUSIONS: Most people diagnosed with cancer in Scotland present to a GP first. Most are referred and diagnosed quickly, with variations by cancer-site. Intervals were longest for the most remote patients. GPs in Scotland and England appear to perform equally but, in view of growing differences between health systems, future comparative audits may be informative.

Perspectives of patients, family caregivers and health professionals on the use of outcome measures in palliative care and lessons for implementation: a multi-method qualitative study.

BACKGROUND: Routine use of outcome measures in palliative care is recommended to demonstrate and improve quality of care. The use of outcome measures is relatively recent in UK specialist palliative care services and understanding their use in practice is key to successful implementation. We therefore aimed to explore how patient-centred outcome measures are used in specialist palliative care, and identify key considerations for implementation. METHODS: Multi-method qualitative study (semi-structured interviews and non-participant observation). Patients, family caregivers and health professionals were purposively sampled from nine specialist palliative care services (hospice, hospital and community settings) in London, UK. Framework analysis, informed by the Consolidated Framework for Implementation Research (CFIR), was undertaken. RESULTS: Thirty eight interviews and nine observations were conducted. Findings are presented according to the five CFIR domains: (I) intervention: participants highlighted advantages, disadvantages and appropriateness of outcome measures in palliative care; (II) outer setting: policy and national drivers are necessary to encourage use of outcome measures; (III) inner setting: information technology infrastructure, organisational drive, and support from peers and leadership were institutional factors that shaped the use of outcome measures; (IV) individual: clear rationale for using outcome measures and skills to use them in practice were essential; (V) implementation: stepwise introduction of outcome measures, regular feedback sessions, and champions/facilitators were important to strengthen routine use. CONCLUSIONS: All CFIR domains need consideration for effective implementation. Outcome data needs to be fed back to and interpreted for professionals in order to improve and sustain outcome data collection, and drive meaningful improvements in palliative care.

Taking patient and public involvement online: qualitative evaluation of an online forum for palliative care and rehabilitation research.

PLAIN ENGLISH SUMMARY: Patient and public involvement (PPI) is increasingly recognised as important in research. Most PPI takes place face-to-face, but this can be difficult for people who are unwell or have caring responsibilities. As these challenges are particularly common in palliative care and rehabilitation research, we developed an online forum for PPI: www.csipublicinvolvement.co.uk. In this study, we explored how well the online forum worked, if it is a suitable method for PPI, and how PPI members and researchers reacted to using it. We used an existing theory about online interventions to help choose the 'right' questions to ask participants. We invited PPI members and researchers who had used the online forum to participate in focus groups, and identified the most important themes discussed. Within this study, PPI members have helped with the interview questions, analysis, and write up. Overall, four PPI members and five researchers participated in the focus groups. Participants felt the online forum worked well and had multiple benefits. From the discussions, we identified four key questions to consider when developing online methods for PPI: how does the forum work, how does it engage people, how does it empower people, and what is the impact? Participants suggested the forum could be improved by being more PPI and less researcher focused. We conclude that when developing online methods of PPI, a functioning forum is not enough: it also needs to be engaging and empowering to have an impact. Future work can use these four domains when developing their own online PPI methods. BACKGROUND: Patient and public involvement (PPI) in research is increasingly recognised as important. Most PPI activities take place face-to-face, yet this can be difficult for people with ill health or caring responsibilities, and may exclude people from hard-to-reach populations (e.g. living in vulnerable social circumstances and/or remote geographical locations). These challenges are particularly pertinent in palliative care and rehabilitation research where people often live with, or care for someone with, advanced illness. In response to this, we aimed to test the functionality, feasibility, and acceptability of an online forum for PPI for palliative care and rehabilitation research (www.csipublicinvolvement.co.uk). METHODS: We conducted separate focus groups with PPI members and researchers who had used the online forum. Data collection was underpinned by DeLone and Mclean's model of information systems success. Focus groups were recorded, transcribed, and analysed using inductive thematic analysis. Dual coding by two authors ensured rigour, and attention was paid to divergent cases. RESULTS: Four PPI members and five researchers participated in the focus groups (two PPI focus groups, one researcher focus group). The online forum was perceived as functional, feasible, and acceptable. Our analysis identified four key questions to consider when developing online methods for PPI: (1) how does the forum work, (2) how does it engage people, (3) how does it empower people, and (4) what is the impact? PPI members felt that the online forum was too researcher led, and needed to be more PPI focussed. CONCLUSIONS: When developing online methods of PPI, a functioning forum is not enough: it also needs to be engaging and empowering to have an impact. To optimise online involvement, future work should refer to these four domains and balance the needs of researchers and PPI members.

Diagnosing cancer in primary care: results from the National Cancer Diagnosis Audit.

BACKGROUND: Continual improvements in diagnostic processes are needed to minimise the proportion of patients with cancer who experience diagnostic delays. Clinical audit is a means of achieving this. AIM: To characterise key aspects of the diagnostic process for cancer and to generate baseline measures for future re-audit. DESIGN AND SETTING: Clinical audit of cancer diagnosis in general practices in England. METHOD: Information on patient and tumour characteristics held in the English National Cancer Registry was supplemented by information from GPs in participating practices. Data items included diagnostic timepoints, patient characteristics, and clinical management. RESULTS: Data were collected on 17 042 patients with a new diagnosis of cancer during 2014 from 439 practices. Participating practices were similar to non-participating ones, particularly regarding population age, urban/rural location, and practice-based patient experience measures. The median diagnostic interval for all patients was 40 days (interquartile range [IQR] 15-86 days). Most patients were referred promptly (median primary care interval 5 days [IQR 0-27 days]). Where GPs deemed diagnostic delays to have occurred (22% of cases), patient, clinician, or system factors were responsible in 26%, 28%, and 34% of instances, respectively. Safety netting was recorded for 44% of patients. At least one primary care-led investigation was carried out for 45% of patients. Most patients (76%) had at least one existing comorbid condition; 21% had three or more. CONCLUSION: The findings identify avenues for quality improvement activity and provide a baseline for future audit of the impact of 2015 National Institute for Health and Care Excellence guidance on management and referral of suspected cancer.

A Systematic Review of the Use of the Palliative Care Outcome Scale and the Support Team Assessment Schedule in Palliative Care.

CONTEXT: The Palliative care Outcome Scale (POS) and the Support Team Assessment Schedule (STAS) are two outcome measures used in palliative care settings to assess palliative concerns, needs, and quality of care. OBJECTIVES: This systematic review builds on the findings of a previous review to appraise the use of the POS and STAS since 2010, particularly the context and nature of their use. METHODS: MEDLINE, Embase, PsycINFO, British Nursing Index, and CINAHL were searched for studies published between February 2010 and June 2014. Relevant authors were contacted, and reference lists of included studies were searched. Studies reporting validation or the use of the POS or STAS were included, and data on sample population, how the outcome measure was being used, study design, study aim, and results of the study were extracted. RESULTS: Forty-three studies were included (POS n = 35, STAS n = 8). There was an increase in the use of the POS and STAS in Europe and Africa with the publication of 13 new translations of the POS. Most studies focused on the use, rather than further validation, of the POS and STAS. There has been increasing use of these measures within non-cancer patient groups. CONCLUSION: The POS and STAS are now used in a wide variety of settings and countries. These tools may be used in the future to compare palliative care needs and quality of care across diverse contexts and patient groups.

Understanding older women's decision making and coping in the context of breast cancer treatment.

BACKGROUND: Primary endocrine therapy (PET) is a recognised alternative to surgery followed by endocrine therapy for a subset of older, frailer women with breast cancer. Choice of treatment is preference-sensitive and may require decision support. Older patients are often conceptualised as passive decision-makers. The present study used the Coping in Deliberation (CODE) framework to gain insight into decision making and coping processes in a group of older women who have faced breast cancer treatment decisions, and to inform the development of a decision support intervention (DSI). METHODS: Semi-structured interviews were carried out with older women who had been offered a choice of PET or surgery from five UK hospital clinics. Women's information and support needs, their breast cancer diagnosis and treatment decisions were explored. A secondary analysis of these interviews was conducted using the CODE framework to examine women's appraisals of health threat and coping throughout the deliberation process. RESULTS: Interviews with 35 women aged 75-98 years were analysed. Appraisals of breast cancer and treatment options were sometimes only partial, with most women forming a preference for treatment relatively quickly. However, a number of considerations which women made throughout the deliberation process were identified, including: past experiences of cancer and its treatment; scope for choice; risks, benefits and consequences of treatment; instincts about treatment choice; and healthcare professionals' recommendations. Women also described various strategies to cope with breast cancer and their treatment decisions. These included seeking information, obtaining practical and emotional support from healthcare professionals, friends and relatives, and relying on personal faith. Based on these findings, key questions were identified that women may ask during deliberation. CONCLUSIONS: Many older women with breast cancer may be considered involved rather than passive decision-makers, and may benefit from DSIs designed to support decision making and coping within and beyond the clinic setting.

Results of a transparent expert consultation on patient and public involvement in palliative care research.

BACKGROUND: Support and evidence for patient, unpaid caregiver and public involvement in research (user involvement) are growing. Consensus on how best to involve users in palliative care research is lacking. AIM: To determine an optimal user-involvement model for palliative care research. DESIGN: We hosted a consultation workshop using expert presentations, discussion and nominal group technique to generate recommendations and consensus on agreement of importance. A total of 35 users and 32 researchers were approached to attend the workshop, which included break-out groups and a ranking exercise. Descriptive statistical analysis to establish consensus and highlight divergence was applied. Qualitative analysis of discussions was completed to aid interpretation of findings. SETTING/PARTICIPANTS: Participants involved in palliative care research were invited to a global research institute, UK. RESULTS: A total of 12 users and 5 researchers participated. Users wanted their involvement to be more visible, including during dissemination, with a greater emphasis on the difference their involvement makes. Researchers wanted to improve productivity, relevance and quality through involvement. Users and researchers agreed that an optimal model should consist of (a) early involvement to ensure meaningful involvement and impact and (b) diverse virtual and face-to-face involvement methods to ensure flexibility. CONCLUSION: For involvement in palliative care research to succeed, early and flexible involvement is required. Researchers should advertise opportunities for involvement and promote impact of involvement via dissemination plans. Users should prioritise adding value to research through enhancing productivity, quality and relevance. More research is needed not only to inform implementation and ensure effectiveness but also to investigate the cost-effectiveness of involvement in palliative care research.

Minimum standards for the certification of patient decision support interventions: feasibility and application.

OBJECTIVE: Patient decision support interventions are not currently subject to standardized quality control. The current study aims to assess the feasibility of applying a proposed set of minimum standards (previously developed as part of a possible certification process) to a selection of existing patient decision support interventions. METHODS: A convenience sample of interventions selected from those included in the 2009 Cochrane systematic review of patient decision aids was scored by trained raters using the International Patient Decision Aids Standards (IPDAS) instrument. Scores were then evaluated against the published proposed minimum standards. RESULTS: Twenty-five out of thirty included interventions met all qualifying criteria while only three met the proposed certification criteria. The changes required for an intervention to meet the proposed certification standards were relatively minor. There was considerable variation between raters' mean scores. CONCLUSIONS: Most interventions did not meet the certification criteria due to lack of information on modifiable items such as update policy and funding source. PRACTICE IMPLICATIONS: Specifying minimum standards for patient decision support interventions is a feasible development. However, it remains unclear whether the minimum standards can be applied to interventions designed for use within clinical encounters and to those that target screening and diagnostic tests.

Capture, transfer, and feedback of patient-centered outcomes data in palliative care populations: does it make a difference? A systematic review.

CONTEXT: Patient-centered outcome measures (PCOMs) are an important way of promoting patient-professional communication. However, evidence regarding their implementation in palliative care is limited, as is evidence of the impact on care quality and outcomes. OBJECTIVES: The aim was to systematically review evidence on capture and feedback of PCOMs in palliative care populations and determine the effects on processes and outcomes of care. METHODS: We searched Medline, Embase, CINAHL, BNI, PsycINFO, and gray literature from 1985 to October 2013 for peer-reviewed articles focusing on collection, transfer, and feedback of PCOMs in palliative care populations. Two researchers independently reviewed all included articles. Review articles, feasibility studies, and those not measuring PCOMs in clinical practice were excluded. We quality assessed articles using modified Edwards criteria and undertook narrative synthesis. RESULTS: One hundred eighty-four articles used 122 different PCOMs in 70,466 patients. Of these, 16 articles corresponding to 13 studies met the full inclusion criteria. Most evidence was from outpatient oncology. There was strong evidence for an impact of PCOMs feedback on processes of care including better symptom recognition, more discussion of quality of life, and increased referrals based on PCOMs reporting. There was evidence of improved emotional and psychological patient outcomes but no effect on overall quality of life or symptom burden. CONCLUSION: In palliative care populations, PCOMs feedback improves awareness of unmet need and allows professionals to act to address patients' needs. It consequently benefits patients' emotional and psychological quality of life. However, more high-quality evidence is needed in noncancer populations and across a wider range of settings.

Adapting the coping in deliberation (CODE) framework: a multi-method approach in the context of familial ovarian cancer risk management.

OBJECTIVE: To test whether the coping in deliberation (CODE) framework can be adapted to a specific preference-sensitive medical decision: risk-reducing bilateral salpingo-oophorectomy (RRSO) in women at increased risk of ovarian cancer. METHODS: We performed a systematic literature search to identify issues important to women during deliberations about RRSO. Three focus groups with patients (most were pre-menopausal and untested for genetic mutations) and 11 interviews with health professionals were conducted to determine which issues mattered in the UK context. Data were used to adapt the generic CODE framework. RESULTS: The literature search yielded 49 relevant studies, which highlighted various issues and coping options important during deliberations, including mutation status, risks of surgery, family obligations, physician recommendation, peer support and reliable information sources. Consultations with UK stakeholders confirmed most of these factors as pertinent influences on deliberations. Questions in the generic framework were adapted to reflect the issues and coping options identified. CONCLUSIONS: The generic CODE framework was readily adapted to a specific preference-sensitive medical decision, showing that deliberations and coping are linked during deliberations about RRSO. PRACTICE IMPLICATIONS: Adapted versions of the CODE framework may be used to develop tailored decision support methods and materials in order to improve patient-centred care.

Decision making and coping in healthcare: the Coping in Deliberation (CODE) framework.

OBJECTIVE: To develop a framework of decision making and coping in healthcare that describes the twin processes of appraisal and coping faced by patients making preference-sensitive healthcare decisions. METHODS: We briefly review the literature for decision making theories and coping theories applicable to preference-sensitive decisions in healthcare settings. We describe first decision making, then coping and finally attempt to integrate these processes by building on current theory. RESULTS: Deliberation in healthcare may be described as a six step process, comprised of the presentation of a health threat, choice, options, preference construction, the decision itself and consolidation post-decision. Coping can be depicted in three stages, beginning with a threat, followed by primary and secondary appraisal and ultimately resulting in a coping effort. CONCLUSIONS: Drawing together concepts from prominent decision making theories and coping theories, we propose a multidimensional, interactive framework which integrates both processes and describes coping in deliberation. PRACTICE IMPLICATIONS: The proposed framework offers an insight into the complexity of decision making in preference-sensitive healthcare contexts from a patient perspective and may act as theoretical basis for decision support.