Defining a standard set of patient-centred outcomes for lung cancer.

In lung cancer, outcome measurement has been mostly limited to survival. Proper assessment of the value of lung cancer treatments, and the performance of institutions delivering care, requires more comprehensive measurement of standardised outcomes.The International Consortium for Health Outcomes Measurement convened an international, multidisciplinary working group of patient representatives, medical oncologists, surgeons, radiation oncologists, pulmonologists, palliative care specialists, registry experts and specialist nurses to review existing data and practices. Using a modified Delphi method, the group developed a consensus recommendation ("the set") on the outcomes most essential to track for patients with lung cancer, along with baseline demographic, clinical and tumour characteristics (case-mix variables) for risk adjustment.The set applies to patients diagnosed with nonsmall cell lung cancer and small cell lung cancer. Our working group recommends the collection of the following outcomes: survival, complications during or within 6 months of treatment and patient-reported domains of health-related quality of life including pain, fatigue, cough and dyspnoea. Case-mix variables were defined to improve interpretation of comparisons.We defined an international consensus recommendation of the most important outcomes for lung cancer patients, along with relevant case-mix variables, and are working to support adoption and reporting of these measures globally.

Do working practices of cancer nurse specialists improve clinical outcomes? Retrospective cohort analysis from the English National Lung Cancer Audit.

BACKGROUND: Cancer nurse specialists are advanced practitioners who offer continuity of care and expert support for people diagnosed with specific cancers. Health Education England's Cancer Workforce Plan prioritises expansion of cancer nurse specialist numbers by 2021 as part of the Cancer Taskforce Strategy for England. OBJECTIVE: To assess whether working practices of advanced practice specialist nurses are associated with clinical outcomes for people with lung cancer. METHODS: Adults with non-small cell lung cancer followed from 30 days post-diagnosis in English secondary care were obtained from the English National Lung Cancer Audit, 2007 to 2011. A national survey of lung cancer nurse specialists provided information on self-reported working practices. Mortality and unplanned admissions from 30 days to 12 months post diagnosis were respectively analysed using Cox and Poisson regression. Outcomes were assessed according to patients' receipt of initial assessments by a lung cancer nurse specialist and according to trust-level reported working practices. Regression models were adjusted for individual sociodemographic and clinical characteristics, error adjusted for intracorrelations within regional cancer networks, and presented separately according to patients' treatment pathways (surgery, chemotherapy, radiotherapy, or no anti-cancer therapy). RESULTS: Data for 108,115 people with lung cancer were analysed and associations with mortality and unplanned admissions were infrequent. Among people receiving only radiotherapy, however, the hazard for death was 17% lower among those who received an assessment by a lung cancer nurse specialist, compared with no assessment (hazard ratio = 0.83, 95% confidence interval 0.73-0.94; p = 0.003). The hazard was also lower among those receiving surgery (hazard ratio = 0.91, 0.84-0.99; p = 0.028). Among those receiving radiotherapy, nurse specialists' reported confidence within multidisciplinary team settings was associated with a lower risk of death (hazard ratio = 0.88, 0.78-1.00; p = 0.049) and a lower rate of unplanned cancer-related admissions (incidence rate ratio = 0.83, 0.73-0.95; p = 0.007). Lung cancer nurse specialist assessments before/at diagnosis, were associated with a 5% lower rate of unplanned admissions, compared to when assessments occurred after diagnosis. CONCLUSION: The contribution of nurse specialist working practices was occasionally associated with better outcomes for people with lung cancer. These were not limited to a single treatment pathway, but do indicate discrete relationships within pathways. Our study provides initial measures of overall lung cancer nurse specialist working practices at trusts, however, more detailed studies with longitudinal measurement of lung cancer nurse specialist-patient interaction are needed to better ascertain impacts on long-term patient outcomes. The findings highlight opportunities for potential improvement in effectiveness of service and care management.

Barriers to delivering advanced cancer nursing: A workload analysis of specialist nurse practice linked to the English National Lung Cancer Audit.

PURPOSE: Health services across the world utilise advanced practice in cancer care. In the UK, lung cancer nurse specialists (LCNS) are recognised as key components of quality care in national guidelines, yet access to LCNS contact is unequal and some responsibilities are reportedly left undone. We assess whether any variation in working practices of LCNS is attributable to factors of the lung cancer service at the hospital trust. METHOD: Nationwide workload analysis of LCNS working practices in England, linked at trust level to patient data from the National Lung Cancer Audit. Chi-squared tests were performed to assess whether patient contact, workload, involvement in multidisciplinary teams (MDT), and provision of key interventions were related to 1) the trust's lung cancer service size, 2) LCNS caseload, 3) anti-cancer treatment facilities and 4) lung cancer patient survival. RESULTS: Unpaid overtime was substantial for over 60% of nurses and not associated with particular service factors assessed; lack of administrative support was associated with large caseloads and chemotherapy facilities. LCNS at trusts with no specialty were more likely to challenge all MDT members (80%) compared with those at surgical (53%) or chemotherapy (58%) trusts. The most frequent specialist nursing intervention to not be routinely offered was proactive case management. CONCLUSION: Working practices of LCNS vary according to service factors, most frequently associated with trust anti-cancer treatment facilities. High workload pressures and limited ability to provide key interventions should be addressed across all services to ensure patients have access to recommended standards of care.

Are working practices of lung cancer nurse specialists associated with variation in peoples' receipt of anticancer therapy?

OBJECTIVES: Treatment choices for people with lung cancer may be influenced by contact and engagement with lung cancer nurse specialists (LCNSs). We investigated how service factors, LCNS workload, and LCNS working practices may influence the receipt of anticancer treatment. MATERIALS AND METHODS: English National Lung Cancer Audit data and inpatient Hospital Episode Statistics for 109,079 people with lung cancer surviving 30 days from diagnosis were linked along with LCNS workforce census data and a bespoke nationwide LCNS survey. Multinomial logistic regression was used to determine adjusted relative risk ratios (RRRs) for receipt of anticancer therapies associated with LCNS assessment, LCNS workforce composition, caseload, LCNS reported working practices, treatment facilities at the patients' attending hospitals, and the size of the lung cancer service. RESULTS: Assessment by an LCNS was the strongest independent predictor for receipt of anticancer therapy, with early LCNS assessments being particularly associated with greater receipt of surgery (RRR 1.85, 95%CI 1.63-2.11). For people we considered clinically suitable for surgery, receipt was 55%. Large LCNS caseloads were associated with decreased receipt of surgery among suitable patients (RRR 0.71, 95%CI 0.51-0.97) for caseloads >250 compared to ≤150. Reported LCNS working practices were associated with receipt of surgery, particularly provision of psychological support (RRR 1.60, 95%CI 1.02-2.51) and social support (RRR 1.56, 95%CI 1.07-2.28). CONCLUSION: LCNS assessment, workload, and working practices are associated with the likelihood of patients receiving anticancer therapy. Enabling and supporting LCNSs to undertake key case management interventions offers an opportunity to improve treatment uptake and reduce the apparent gap in receipt of surgery for those suitable.

Which patients are assessed by lung cancer nurse specialists? A national lung cancer audit study of over 128,000 patients across england.

BACKGROUND: Lung cancer nurse specialists (LCNS) are integral to the multidisciplinary clinical team, providing personalised physical and psycho-social interventions, and care management for people with lung cancer. The National Institute of Health and Care Excellence (NICE) recommend that all patients have access to a LCNS. We conducted a national study assessing whether there is variation in access to and timing of LCNS assessment. METHODS: The National Cancer Action Team's LCNS workforce census in England was linked with patient and hospital Trust data from the English National Lung Cancer Audit. Multivariate logistic regression was used to assess features associated with LCNS assessment. RESULTS: 128,124 lung cancer patients were seen from 2007 to 2011. LCNS assessment confirmation was 'yes' in 62%, 'no' in 6% and 'missing' in 32%. Where (in clinic versus ward) and when (before versus after diagnosis) patients were assessed by a LCNS also varied. Older patients with poor performance status, early cancer stage, and comorbidities were less likely to be assessed; there was no difference with sex or socioeconomic group. Patients receiving any anti-cancer treatment were more likely to be assessed. Assessment was lower in Trusts with high annual patient numbers (odds ratio=0.58, 95% confidence interval 0.37-0.91) and where LCNS caseload>250 (0.69, 0.41-1.16, although not statistically significant), but increased where workload was conducted mostly by band 8 nurses (2.22, 1.22-4.02). CONCLUSION: LCNS assessment varied by patient and Trust features, which may indicate unmet need for some patients. The current workforce needs to expand as well as retain experienced LCNSs.

Lung cancer treatment rates and the role of the lung cancer nurse specialist: a qualitative study.

OBJECTIVES: This qualitative study examines how the Lung Cancer Nurse Specialist (LCNS) role operates and why they may be able to increase access to treatment. SETTING: 4 Hospital NHS Foundation Trusts in England. DESIGN: A multiple case study design using semistructured interviews, observation and Framework Analysis techniques. PARTICIPANTS: Four LCNSs, comprised the 'cases'. Twenty four clinicians who worked with the LCNS participated in individual interviews. Six LCNSs took part in a group interview and 60 lung cancer multidisciplinary team (MDT) members and coordinators were observed in the MDT meeting. RESULTS: The LCNS is crucial within the MDT and can act as a catalyst to patient access to treatment. The study identified the clinical activity (assessment, managing symptoms, psychological support and information provision) and role characteristics that can facilitate treatment access. These characteristics are the LCNS's presence across the patient pathway, acting as the 'hub' of the MDT, maintaining a holistic patient focus and working to an advanced level of practice. The findings indicate how factors may have a cumulative impact on treatment access. CONCLUSIONS: If UK patient with lung cancer survival rates are to improve in line with comparable countries, we need to employ every advantage. This study demonstrates how the LCNS role may open doors to positive patient outcomes, including treatment. Further research is required to explore patients' experiences, decision-making and attitudes to treatment.

Assessing fatigue and self-care strategies in patients receiving radiotherapy for non-small cell lung cancer.

Lung cancer represents a major public health problem worldwide (ISD 2000) with approximately 80% of patients presenting with locally advanced or metastatic disease. Treatment is essentially palliative; therefore, symptom management is important. This paper describes the findings from a prospective study of fatigue in newly diagnosed patients with non-small cell lung cancer. Fifty-three patients undergoing radical or high-dose palliative radiotherapy for Stage I, II and III disease were recruited to the study. Patients completed a structured health diary throughout radiotherapy and for up to 1 month post-treatment. Tape-recorded interviews were conducted with a sub-sample (n=11) to explore the nature of fatigue. Complete data sets were available on 46 patients. Consistent with current literature, the study findings demonstrated the progressive nature of this symptom throughout treatment; however, the levels of distress reported and interference with daily living were not found to be as overwhelming in this group of patients as the literature thus far suggests.