Using Primary Care Data to Report Real-World Pancreatic Cancer Survival and Symptomatology.

Pancreatic cancer is the 10th most common cancer diagnosed; despite recent advances in many areas of oncology, survival remains poor, in part owing to late diagnosis. Whilst primary care data are used widely for epidemiology and pharmacovigilance, they are less used for observing survival. In this study we extracted a pancreatic cancer cohort from a nationally representative English primary care database of electronic health records (EHRs) and reported on their symptom and mortality data. A total of 11, 649 cases were identified within the Oxford Royal College of General Practitioners (RCGP) Clinical Informatics Digital Hub network. All-cause mortality data was recorded for 4623 (39.69%). Mean age at recording of cancer diagnosis was 71.4 years (SD 12.0 years). 1-year and 5-year survival was 22.06% and 3.27% respectively. Within a multivariate model, age had a significant impact on survival; those diagnosed under the age of 60 had the longest survival, as compared to those age 60 - 79 (HR: 1.36, 95% CI: 1.20 - 1.54, p < 0.001) and 80+ (HR: 2.13, 95% CI: 1.86 - 2.44, p < 0.01). Symptomatology was examined; at any time point abdominal pain was the most commonly reported symptom present in 5271 cases (45.2%), but within the 12 months preceding diagnosis jaundice was the most common feature, present in 2587 patients (22.2%). Future studies clarifying other contributing factors on survival outcomes and patterns of symptomatology are needed; primary care EHRs provide an opportunity to evaluate real-world cancer patient cohort data.

The European Prostate Cancer Centres of Excellence: A Novel Proposal from the European Association of Urology Prostate Cancer Centre Consensus Meeting.

BACKGROUND: High-quality management of prostate cancer is needed in the fields of clinics, research, and education. OBJECTIVE: The objective of this project was to develop the concept of "European Prostate Cancer Centres of Excellence" (EPCCE), with the specific aim of identifying European centres characterised by high-quality cancer care, research, and education. DESIGN, SETTING, AND PARTICIPANTS: A task force of experts aimed at identifying the general criteria to define the EPCCE. Discussion took place in conference calls and by e-mail from March 2017 to November 2017, and the final consensus meeting named "European Association of Urology (EAU) Prostate Cancer Centre Consensus Meeting" was held in Barcelona on November 16, 2017. OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS: The required criteria were grouped into three main steps: (1) clinics, (2) research, and (3) education. A quality control approach for the three steps was defined. RESULTS AND LIMITATIONS: The definition of EPCCE consisted of the following steps: (1) clinical step-five items were identified and classified as core team, associated services, multidisciplinary approach, diagnostic pathway, and therapeutic pathway; (2) research step-internal monitoring of outcomes was required; clinical data had to be collected through a prespecified database, clinical outcomes had to be periodically assessed, and prospective trials had to be conducted; (3) educational step-it consists of structured fellowship programmes of 1yr, including 6mo of research and 6mo of clinics; and (4) quality assurance and quality control procedures, related to the quality assessment of the previous three steps. A limitation of this project was that the definition of standards and items was mainly based on a consensus among experts rather than being an evidence-based process. CONCLUSIONS: The EAU Prostate Cancer Centre Consensus Meeting defined the criteria for the identification of the EPCCE in the fields of clinics, research, and education. The inclusion of a quality control approach represents the novelty that supports the excellence of these centres. PATIENT SUMMARY: A task force of experts defined the criteria for the identification of European Prostate Cancer Centres of Excellence, in order to certify the high-quality centres for prostate cancer management.

The Siconolfi step test: a valid and reliable assessment of cardiopulmonary fitness in older men with prostate cancer.

BACKGROUND: Assessing fitness and promoting regular physical activity can improve health outcomes and early recovery in prostate cancer. This is however, underutilised in clinical practice. The cardiopulmonary exercise test (CPET) is increasingly being used pre-treatment to measure aerobic capacity and peak oxygen consumption (VO2peak - a gold standard in cardiopulmonary fitness assessment). However, CPET requires expensive equipment and may not always be appropriate. The Siconolfi step test (SST) is simpler and cheaper, and could provide an alternative.The aim of this study was to evaluate the validity and reliability of SST for predicting cardiopulmonary fitness in men with prostate cancer. Men were recruited to this two-centre study (Surrey and Newcastle, United Kingdom) after treatment for locally advanced prostate cancer. They had one or more of three risk factors: elevated blood pressure, overweight (BMI > 25), or androgen deprivation therapy (ADT). Cardiopulmonary fitness was measured using SST and cycle ergometry CPET, at two visits three months apart. The validity of SST was assessed by comparing it to CPET. The VO2peak predicted from SST was compared to the VO2peak directly measured with CPET. The reliability of SST was assessed by comparing repeated measures. Bland-Altman analysis was used to derive limits of agreement in validity and reliability analysis. RESULTS: Sixty-six men provided data for both SST and CPET. These data were used for validity analysis. 56 men provided SST data on both visits. These data were used for reliability analysis. SST provided valid prediction of the cardiopulmonary fitness in men > 60 years old. The average difference between CPET and SST was 0.64 ml/kg/min with non-significant positive bias towards CPET (P = 0.217). Bland-Altman 95% limits of agreement of SST with CPET were ± 7.62 ml/kg/min. SST was reliable across the whole age range. Predicted VO2peak was on average 0.53 ml/kg/min higher at Visit 2 than at Visit 1 (P = 0.181). Bland-Altman 95% limits of agreement between repeated SST measures were ± 5.84 ml/kg/min. CONCLUSIONS: SST provides a valid and reliable alternative to CPET for the assessment of cardiopulmonary fitness in older men with prostate cancer. Caution is advised when assessing men 60 years old or younger because the VO2peak predicted with SST was significantly lower than that measured with CPET.

Physical activity interventions are delivered consistently across hospitalized older adults but multimorbidity is associated with poorer rehabilitation outcomes: A population-based cohort study.

BACKGROUND: Older adults live with multimorbidity including frailty and cognitive impairment often requiring hospitalization. While physical activity interventions (PAIs) are a normal rehabilitative treatment, their clinical effect in hospitalized older adults is uncertain. OBJECTIVE: To observe PAI dosing characteristics and determine their impact on clinical performance parameters. DESIGN: A single-site prospective observational cohort study in an older persons' unit. SUBJECTS: Seventy-five older persons' unit patients ≥65 years. INTERVENTION: PAI; therapeutic contact between physiotherapy clinician and patient. MEASUREMENTS: Parameters included changes in activities-of-daily-living (Barthel Index), handgrip strength, balance confidence, and gait velocity, measured between admission and discharge (episode). Dosing characteristics were PAI temporal initiation, frequency, and duration. Frailty/cognition status was dichotomized independently per participant yielding 4 subgroups: frail/nonfrail and cognitively-impaired/cognitively-unimpaired. RESULTS: Median (interquartile range) PAI initiation occurred after 2 days (1-4), frequency was 0.4 PAIs per day (0.3-0.5), and PAI duration per episode was 3.75 hours (1.8-7.2). All clinical parameters improved significantly across episodes: grip strength median (interquartile range) change, 2.0 kg (0.0-2.3) (P < .01); Barthel Index, 5 (3-8) (P < .01); gait velocity, 0.06 m.∙s-1 (0.06-0.16) (P < .01); and balance confidence, -3 (-6 to -1) (P < .01). Physical activity intervention dosing remained consistent within subgroups. While several moderate to large associations between amount of PAIs and change in clinical parameters were observed, most were within unimpaired subgroups. CONCLUSIONS: PAI dosing is consistent. However, while clinical changes during hospital episodes are positive, more favourable responses to PAIs occur if patients are nonfrail/cognitively-unimpaired. Therefore, to deliver a personalized rehabilitation approach, adaptation of PAI dose based on patient presentation is desirable.

Symptoms, unmet needs, psychological well-being and health status in survivors of prostate cancer: implications for redesigning follow-up.

OBJECTIVE: To explore ongoing symptoms, unmet needs, psychological wellbeing, self-efficacy and overall health status in survivors of prostate cancer. PATIENTS AND METHODS: An invitation to participate in a postal questionnaire survey was sent to 546 men, diagnosed with prostate cancer 9-24 months previously at two UK cancer centres. The study group comprised men who had been subject to a range of treatments: surgery, radiotherapy, hormone therapy and active surveillance. The questionnaire included measures of prostate-related quality of life (Expanded Prostate cancer Index Composite 26-item version, EPIC-26); unmet needs (Supportive Care Needs Survey 34-item version, SCNS-SF34); anxiety and depression (Hospital Anxiety and Depression Scale, HADS), self-efficacy (modified Self-efficacy Scale), health status (EuroQol 5D, EQ-5D) and satisfaction with care (questions developed for this study). A single reminder was sent to non-responders after 3 weeks. Data were analysed by age, co-morbidities, and treatment group. RESULTS: In all, 316 men completed questionnaires (64.1% response rate). Overall satisfaction with follow-up care was high, but was lower for psychosocial than physical aspects of care. Urinary, bowel, and sexual functioning was reported as a moderate/big problem in the last month for 15.2% (n = 48), 5.1% (n = 16), and 36.5% (n = 105) men, respectively. The most commonly reported moderate/high unmet needs related to changes in sexual feelings/relationships, managing fear of recurrence/uncertainty, and concerns about the worries of significant others. It was found that 17% of men (51/307) reported potentially moderate-to-severe levels of anxiety and 10.2% (32/308) reported moderate-to-severe levels of depression. The presence of problematic side-effects was associated with higher psychological morbidity, poorer self-efficacy, greater unmet needs, and poorer overall health status. CONCLUSION: While some men report relatively few problems after prostate cancer treatment, this study highlights important physical and psycho-social issues for a significant minority of survivors of prostate cancer. Strategies for identifying those men with on-going problems, alongside new interventions and models of care, tailored to individual needs, are needed to improve quality of life.

Working patterns and perceived contribution of prostate cancer clinical nurse specialists: a mixed method investigation.

BACKGROUND: Prostate cancer is prevalent worldwide. In England, men living with this malignancy often report unmet psychological, informational, urological and sexual needs. Their experience of care is correspondingly lower than that of other patient groups with cancer. To address this, prostate cancer clinical nurse specialist posts were established across England and Scotland. Their intent was to support men with this form of cancer, enhance symptom management and improve quality of service provision. OBJECTIVES: The research sought to investigate prostate cancer clinical nurse specialists' roles, determine whom they targeted services at, and determine their work practices and perceived contribution. DESIGN: A mixed method multi-site exploratory-descriptive design was employed. SETTINGS: Data were collected across four acute NHS Trusts-one in the South of England, one in the Midlands, one in Northern England and one in Scotland, respectively. PARTICIPANTS: Participants included 4 prostate cancer clinical nurse specialists, 19 of their clinical colleagues and 40 men they provided care to. METHODS: Data were collected through nurse specialists' completion of a Diary and Contact Sheets. Interviews were conducted concurrently with the nurses, stakeholders they worked alongside and patients on their caseload. Data were collected between November 2004 and January 2006. RESULTS: There was great variation in the qualifications and experience of nurse specialists and in the services they provided. Services ranged from generic support and information provided across the disease trajectory to provision of services to meet specific care needs, e.g. providing nurse-led clinics for erectile dysfunction. Patients and members of the multidisciplinary team welcomed the introduction of nurse specialists but were aware they could become over burdened through their rapidly growing caseloads. CONCLUSIONS: Variability in services provided by the prostate cancer nurse specialists arose from differences in local demand for nursing services and the skills and experiences of those appointed. Such variability - whilst understandable - has implications for access and equity across patient groups. Further, it can compromise efforts to define clinical nurse specialists' contribution to care, can impede others' expectation of their role, and render their outcomes difficult to evaluate.

Integrated care: utilisation of complementary and alternative medicine within a conventional cancer treatment centre.

OBJECTIVES: To estimate the proportion of cancer outpatients who visit a Complementary and Alternative Medicine (CAM) unit that is located within a conventional cancer treatment centre; to compare the characteristics of CAM unit visitors with those of all outpatients; to monitor the demand for 20 CAM therapies delivered by professionals, and the use of the CAM unit for waiting, gathering information and informal support from volunteer staff. DESIGN: Prospective, observational, over a six month period. SETTING: CAM unit within a NHS cancer treatment centre. MAIN OUTCOME MEASURES: Utilisation of the CAM unit for 20 complementary therapies, and for waiting, gathering information, informal support; characteristics of CAM users compared with those of all cancer outpatients attending the cancer centre; predictors of CAM therapy use and frequent use. RESULTS: 761 (95% of those approached) people were recruited, 498 (65.4%) cancer patients, 202 (26.5%) relatives, 37 (4.8%) friends/carers, 24 (3.2%) staff. Women predominated (n=560, 73.6%). Of all outpatients attending the cancer centre, 498 (15.8%) visited the CAM unit, 290 (9.2%) accessed therapies. Compared to all outpatients, those visiting the CAM unit were: younger (mean 63.7 vs. 58.4 years), more likely to be female (57.9% vs. 78.7%), have breast (14.8% vs. 51.9%), gynaecological (5.0% vs. 9.1%) cancer, live in local postal district (57.3% vs. 61.6%). Significant predictors of therapy use and frequent visits were being a patient, female, higher education, living closer to the cancer centre. CONCLUSIONS: Despite easy access to CAM therapies, a relatively small number of people regularly used them, whilst a larger number selectively tried a few. The integrated CAM unit meets a demand for information and informal support. The findings inform emerging policy on integrating CAM and conventional cancer treatment to address psychosocial needs of people with cancer. More research is needed on why people do not use integrated CAM services and how charges affect demand.

Delivering sensitive health care information: challenging the taboo of women's sexual health after pelvic radiotherapy.

OBJECTIVE: The aim of this study was to elicit current practice with regard to the content and delivery of patient education for women undergoing pelvic radiotherapy. METHODS: A 38-item questionnaire was sent to all radiotherapy departments (n=65) and a convenience sample of specialist gynaecological oncology nurses (n=166), with response rates of 62% (n=40) and 42% (n=52), respectively. Data analysis of 32 different patient education leaflets from individual cancer units, cancer networks and vaginal dilator manufacturers was conducted. Content was evaluated on the inclusion and accuracy of the key knowledge women should receive before completing pelvic radiotherapy. RESULTS: Patient education focused on the technical aspects of vaginal dilation with minimal content on psychosocial 6% (n=2) or sexual health components 44% (n=14). It was evident from the information leaflets reviewed and questionnaire responses that there was duplication of verbal and written information provision in the clinical setting as opposed to using different information strategies to provide more comprehensive coverage of knowledge gaps in post-treatment sexual rehabilitation. CONCLUSION: Results suggest the provision of vaginal dilation advice and sexual health information may benefit from being placed in the wider context of assessing treatment impact on women's health. PRACTICE IMPLICATIONS: It is important to analyse the management of sensitive content, within both written information materials and verbal consultations, to determine the most effective information provision strategies that support sexual health interventions in cancer practice.

Palliative care of patients with a primary malignant brain tumour: case review of service use and support provided.

Individuals with a primary malignant brain tumour require intensive palliative care services because of the symptoms and cognitive problems they experience. Many of these patients stay with their families at home, being supported by palliative care home teams rather than being admitted for hospice care. The provision of respite care and community services to support these families goes largely unreported. This study arises out of a need to review support services for patients and carers within one cancer and palliative care service. This retrospective case analysis identifies that there are a range of services used in the community to support patients with primary malignant brain tumours but that only a small proportion receive inpatient hospice care. District nursing services were extensively used but also a high number (74%) of patients were admitted to local hospitals for symptom management. This paper attempts to explore the services utilized but also questions the apparently limited provision of hospice care for supporting individuals in the palliative care stages of such an illness. This paper considers the illness trajectory, the complex symptoms experienced by patients and respite services utilized. Issues of those engaged in informal care giving and in the provision of support for those with a primary malignant glioma are also considered.

Exploring nursing values in the development of a nurse-led service.

This article considers the development of nurse-led services as a part of a pilot study and explores the therapeutic nature of the role of the nurse. In particular it suggests a need for reconsideration of the fundamental values of nurse-led care in the context of changing organizational culture. Within the UK there has been pressure from policy makers to extend the role of the specialist nurse and create new nursing roles, shifting the boundaries between professional health groups. The philosophy of nurse-led initiatives has therefore been driven mainly from a service redesign and clinical need standpoint rather than necessarily focusing on enhancing patients' experience and the changes in organizational culture required to achieve this. While several studies have focused on the safety, comparative cost and comparative patient outcomes in nurse-led care in relation to traditional or doctor-led care, little attention has been given to the changing organizational values underlying the nursing role. Exploring this context is essential if new nursing roles are to provide more than relief for bottlenecks in the system and also meet their potential for providing patient centred and innovative models of care.

Implementation of capecitabine (Xeloda) into a cancer centre: UK experience.

Switching patients from intravenous 5-FU/LV to oral capecitabine (Xeloda) for the treatment of metastatic colorectal cancer is associated with a reduction in the need for hospitalisations to manage 5-FU-associated delivery and complications, with resulting healthcare savings. However, implementing oral therapy with capecitabine within a cancer centre in the UK has required a considerable change in attitude within healthcare services. The resulting need for patients to take an active role in their treatment, and the co-ordination and monitoring of such a service at home has raised issues for chemotherapy services. To enhance patient involvement and compliance with medication a patient guide was developed to educate, and support individuals and enable them to understand the rationale for treatment and when to seek help. In addition, patients are encouraged to monitor and record symptoms in a diary. This change in service focus has required an investment in time educating and informing patients, community health workers and hospital practitioners. This change has been co-ordinated through the chemotherapy outpatient clinic. Effective communication between hospital and home has been important in implementing oral chemotherapy. While the initial challenge of monitoring and educating patients receiving capecitabine has been met, the Primary Care team and cancer centre need to continue to assess side effects and patient compliance in order to improve knowledge of capecitabine among healthcare professionals and ensure safe practice.