European Respiratory Society guideline on various aspects of quality in lung cancer care.

This European Respiratory Society guideline is dedicated to the provision of good quality recommendations in lung cancer care. All the clinical recommendations contained were based on a comprehensive systematic review and evidence syntheses based on eight PICO (Patients, Intervention, Comparison, Outcomes) questions. The evidence was appraised in compliance with the GRADE (Grading of Recommendations Assessment, Development and Evaluation) approach. Evidence profiles and the GRADE Evidence to Decision frameworks were used to summarise results and to make the decision-making process transparent. A multidisciplinary Task Force panel of lung cancer experts formulated and consented the clinical recommendations following thorough discussions of the systematic review results. In particular, we have made recommendations relating to the following quality improvement measures deemed applicable to routine lung cancer care: 1) avoidance of delay in the diagnostic and therapeutic period, 2) integration of multidisciplinary teams and multidisciplinary consultations, 3) implementation of and adherence to lung cancer guidelines, 4) benefit of higher institutional/individual volume and advanced specialisation in lung cancer surgery and other procedures, 5) need for pathological confirmation of lesions in patients with pulmonary lesions and suspected lung cancer, and histological subtyping and molecular characterisation for actionable targets or response to treatment of confirmed lung cancers, 6) added value of early integration of palliative care teams or specialists, 7) advantage of integrating specific quality improvement measures, and 8) benefit of using patient decision tools. These recommendations should be reconsidered and updated, as appropriate, as new evidence becomes available.

Advanced Symptom Management System for Patients with Malignant Pleural Mesothelioma (ASyMSmeso): Mixed Methods Study.

BACKGROUND: Patients with malignant pleural mesothelioma (MPM) have a life-limiting illness and short prognosis and experience many debilitating symptoms from early in the illness. Innovations such as remote symptom monitoring are needed to enable patients to maintain wellbeing and manage symptoms in a proactive and timely manner. The Advanced Symptom Management System (ASyMS) has been successfully used to monitor symptoms associated with cancer. OBJECTIVE: This study aimed to determine the feasibility and acceptability of using an ASyMS adapted for use by patients with MPM, called ASyMSmeso, enabling the remote monitoring of symptoms using a smartphone. METHODS: This was a convergent mixed methods study using patient-reported outcome measures (PROMs) at key time points over a period of 2-3 months with 18 patients. The Sheffield Profile for Assessment and Referral for Care (SPARC), Technology Acceptance Model (TAM) measure for eHealth, and Lung Cancer Symptom Scale-Mesothelioma (LCSS-Meso) were the PROMs used in the study. Patients were also asked to complete a daily symptom questionnaire on a smartphone throughout the study. At the end of the study, semistructured interviews with 11 health professionals, 8 patients, and 3 carers were conducted to collect their experience with using ASyMSmeso. RESULTS: Eighteen patients with MPM agreed to participate in the study (33.3% response rate). The completion rates of study PROMs were high (97.2%-100%), and completion rates of the daily symptom questionnaire were also high, at 88.5%. There were no significant changes in quality of life, as measured by LCSS-Meso. There were statistically significant improvements in the SPARC psychological need domain (P=.049) and in the "Usefulness" domain of the TAM (P=.022). End-of-study interviews identified that both patients and clinicians found the system quick and easy to use. For patients, in particular, the system provided reassurance about symptom experience and the feeling of being listened to. The clinicians largely viewed the system as feasible and acceptable, and areas that were mentioned included the early management of symptoms and connectivity between patients and clinicians, leading to enhanced communication. CONCLUSIONS: This study demonstrates that remote monitoring and management of symptoms of people with MPM using a mobile phone are feasible and acceptable. The evidence supports future trials using remote symptom monitoring to support patients with MPM at home.

ERS statement on harmonised standards for lung cancer registration and lung cancer services in Europe.

The European Respiratory Society (ERS) task force for harmonised standards for lung cancer registration and lung cancer services in Europe recognised the need to create a single dataset for use in pan-European data collection and a manual of standards for European lung cancer services.The multidisciplinary task force considered evidence from two different sources, reviewing existing national and international datasets alongside the results of a survey of clinical data collection on lung cancer in 35 European countries. A similar process was followed for the manual of lung cancer services, with the task force using existing guidelines and national or international recommendations for lung cancer services to develop a manual of standards for services in Europe.The task force developed essential and minimum datasets for lung cancer registration to enable all countries to collect the same essential data and some to collect data with greater detail. The task force also developed a manual specifying standards for lung cancer services in Europe.Despite the wide variation in the sociopolitical landscape across Europe, the ERS is determined to encourage the delivery of high-quality lung cancer care. Both the manual of lung cancer services and the minimum dataset for lung cancer registration will support this aspiration.

Using patient-reported outcome measures to deliver enhanced supportive care to people with lung cancer: feasibility and acceptability of a nurse-led consultation model.

PURPOSE: Developing new supportive/palliative care services for lung cancer should encompass effective ways to promptly identify and address patients' healthcare needs. We examined whether an in-clinic, nurse-led consultation model, which was driven by use of a patient-reported outcomes (PRO) measure, was feasible and acceptable in the identification of unmet needs in patients with lung cancer. METHODS: A two-part, repeated-measures, mixed-methods study was conducted. Part 1 employed literature reviews and stakeholder focus group interviews to inform selection of a population-appropriate needs assessment PRO measure. In Part 2, lung cancer nurse specialists (CNS) conducted three consecutive monthly consultations with patients. Recruitment/retention data, PRO data, and exit interview data were analysed. RESULTS: The Sheffield Profile for Assessment and Referral to Care was the PRO measure selected based on Part 1 data. Twenty patients (response rate: 26%) participated in Part 2; 13 (65%) participated in all three consultations/assessments. The PRO measure helped patients to structure their thinking and prompted them to discuss previously underreported and/or sensitive issues, including such topics as family concerns, or death and dying. Lung CNS highlighted how PRO-measures-driven consultations differed from previous ones, in that their scope was broadened to allow nurses to offer personalised care. Small-to-moderate reductions in all domains of need were noted over time. CONCLUSIONS: Nurse-led PRO-measures-driven consultations are acceptable and conditionally feasible to holistically identify and effectively manage patient needs in modern lung cancer care. PRO data should be systematically collected and audited to assist in the provision of supportive care to people with lung cancer.

The European initiative for quality management in lung cancer care.

Lung cancer is the commonest cause of cancer-related death worldwide and poses a significant respiratory disease burden. Little is known about the provision of lung cancer care across Europe. The overall aim of the Task Force was to investigate current practice in lung cancer care across Europe. The Task Force undertook four projects: 1) a narrative literature search on quality management of lung cancer; 2) a survey of national and local infrastructure for lung cancer care in Europe; 3) a benchmarking project on the quality of (inter)national lung cancer guidelines in Europe; and 4) a feasibility study of prospective data collection in a pan-European setting. There is little peer-reviewed literature on quality management in lung cancer care. The survey revealed important differences in the infrastructure of lung cancer care in Europe. The European guidelines that were assessed displayed wide variation in content and scope, as well as methodological quality but at the same time there was relevant duplication. The feasibility study demonstrated that it is, in principle, feasible to collect prospective demographic and clinical data on patients with lung cancer. Legal obligations vary among countries. The European Initiative for Quality Management in Lung Cancer Care has provided the first comprehensive snapshot of lung cancer care in Europe.

A systematic review of the barriers and facilitators impacting patient enrolment in clinical trials for lung cancer.

PURPOSE: Clinical research trials are needed to enhance the medical care and treatment for lung cancer, which remains the leading cause of cancer-related deaths worldwide. While clinical trials allow for the development of novel therapies to treat cancer, the recruitment of lung cancer patients to trials is low. This review aimed to identify and synthesise the available literature concerning barriers and facilitators affecting lung cancer patients' decisions to enrol in clinical trials to guide future cancer research efforts. METHODS: Four databases were systematically searched: Academic Search Complete, CINHAL, PubMed, and PsycINFO in August 2023. A supplemental grey literature search was also conducted alongside this. Articles were quality appraised using CASP and JMI checklists, and results were narratively synthesised. RESULTS: Eighteen articles of varied design met the inclusion criteria, and results were mapped onto the Capability, Opportunity, and Motivation Behaviour (COM-B) Model to help structure and conceptualise review findings. Evidence suggests that the decision to enrol in a trial is multifaceted and informed by: when and how study information is presented, travel and trial eligibility, and altruistic hopes and fears. CONCLUSIONS: There is need to address the many different concerns that lung cancer patients have about participating in a clinical trial through the supply of accessible and timely trial information, and via the reduction of travel, expansion of study eligibility criteria, and recognition of a person's altruistic wishes, hopes, fears, and family-oriented concerns. Future research should aim to work alongside lung cancer patients, clinicians, and other stakeholders to increase research accessibility.

A snapshot of innovation: chemotherapy delivery in the UK.

Chemotherapy is a major part of NHS care. Aroud 200 hospitals deliver chemotherapy services within their facilities, in community clinics and in the patients' homes. The safety of such services has attracted attention resulting in the production of a service template for the future by the National Chemotherapy Advisory Board in 2009. Its report recognized opportunities for redesigning services and recommended optimising the development of non-medical staff. The UK chemotherapy partnership was established to help professionals involved in chemotherapy share their experiences of improving and developing services and roles. This short article places the need for the UK Chemotherapy Partnership website in context and describes the origins of the Partnership as well as future plans.

Expert consensus on the management of erlotinib-associated cutaneous toxicity in the u.k.

Rash has been reported in up to 76% of patients with lung cancer who have received the epidermal growth factor receptor inhibitor (EGFRI) erlotinib. It has also been observed in patients treated with other agents that have a similar mode of action. Erlotinib-associated skin toxicity typically presents as a papulopustular, follicular, acneiform rash. In most cases, it is mild, transient, and well tolerated, but in 8%-12% of patients, it may be sufficiently severe and persistent to necessitate intervention. Increasingly strong data suggest that the incidence and severity of skin toxicity may be predictive of response and survival in patients treated with erlotinib. This has prompted some clinicians to consider "treatment to rash" (i.e., increasing the dosage until a rash appears) as a rational management strategy. In 2007, an international consensus was developed for the management of EGFRI-associated skin toxicity. Subsequently, a multidisciplinary group (the U.K. Erlotinib Skin Toxicity Management Consensus Group) met to validate and modify the international recommendations for U.K. use, with specific reference to erlotinib. Although many aspects of the international consensus were approved by the group as being relevant for the U.K., certain parts were modified. The resulting expert opinion is a practical and workable version of the international proposal that considers all applicable national issues regarding the management of erlotinib-associated skin toxicity.

Lung cancer stigma: A concept with consequences for patients.

BACKGROUND: Patients with lung cancer (LC) report lower quality of life (QoL) and higher levels of psychological distress compared with other cancer populations. Lung cancer stigma (LCS) may in part explain these findings. AIM: We investigated the prevalence of patient-perceived lung cancer stigma (LCS) and its relationships to symptom burden/severity, depression, and deficits in health-related quality of life (HR-QoL). METHODS: In this descriptive, observational, and cross-sectional study, 201 participants were sent questionnaires. These included the Cataldo Lung Cancer Stigma Scale (CLCSS), the Lung Cancer Symptom Scale, the Centre for Epidemiologic Studies-Depression Scale, and the Quality of Life Inventory. RESULTS: Participants were on average 69 years old, 52% women, 95% ever smokers, and 18.5% current smokers. The mean total CLCSS score was 53.1 (SD = 14.1; range = 31-94). LCS was significantly correlated with younger age (P < .001), greater social deprivation (P < .05), being unemployed (P < .001), depression (P < .001), symptom burden (P < .001), and HR-QoL deficits (P < .001). Symptom burden explained 18% of variance in LCS (P < .001). LCS explained 8.5% and 14.3% of the variance in depression (P < .001) and HR-QoL (P < .001), respectively. CONCLUSION: Patients with lung cancer are vulnerable to LCS. Symptom burden can directly contribute to greater perceived LCS. Greater perceived LCS can be directly related to greater levels of depression and lower HR-QoL. A tailored approach is required to screen for LCS and implement interventions to enhance the psychosocial well-being of patients with perceived LCS.

Development of a novel remote patient monitoring system: the advanced symptom management system for radiotherapy to improve the symptom experience of patients with lung cancer receiving radiotherapy.

BACKGROUND: The use of technology-enhanced patient-reported outcome measures to monitor the symptoms experienced by people with cancer is an effective way to offer timely care. OBJECTIVE: This study aimed to (a) explore the feasibility and acceptability of the Advanced Symptom Management System with patients with lung cancer receiving radiotherapy and clinicians involved in their care and (b) assess changes in patient outcomes during implementation of the Advanced Symptom Management System with patients with lung cancer receiving radiotherapy in clinical practice. METHODS: A repeated-measures, single-arm, mixed-methods study design was used involving poststudy interviews and completion of patient-reported outcome measures at baseline and end of treatment with 16 patients with lung cancer and 13 clinicians who used this mobile phone-based symptom monitoring system. RESULTS: Only rarely did patients report problems in using the handset and they felt that the system covered all relevant symptoms and helped them to manage their symptoms and effectively communicate with clinicians. Clinical improvements in patient anxiety, drowsiness, and self-care self-efficacy were also observed. Clinicians perceived the use of "real-time" risk algorithms and automated self-care advice provided to patients as positively contributing to clinical care. Reducing the complexity of the system was seen as important to promote its utility. CONCLUSIONS: Although preliminary, these results suggest that monitoring patient symptoms using mobile technology in the context of radiotherapy for lung cancer is feasible and acceptable in clinical practice. IMPLICATIONS FOR PRACTICE: Future research would be most beneficial if the use of this technology was focused on the postradiotherapy phase and expanded the scope of the system to encompass a wider range of supportive care needs.

An Interpretative Phenomenological Analysis of the lived experience of multiple concurrent symptoms in patients with lung cancer: a contribution to the study of symptom clusters.

PURPOSE OF THE RESEARCH: To explore the lived experience of multiple concurrent symptoms in people with advanced lung cancer to contribute to the understanding of the experience of symptom clusters. METHODS AND SAMPLE: Purposive sampling recruited ten people with advanced lung cancer who were experiencing three or more concurrent symptoms, were at least 18 years of age and were able to provide written informed consent. The participants took part in two consecutive, in-depth interviews, 3-5 weeks apart. Interpretative Phenomenological Analysis was used to analyse the data. FINDINGS: Participants experienced 4-11 concurrent symptoms with fatigue, cough, pain and breathlessness featuring prominently in their interviews. The participants commonly identified associations between the symptoms that they experienced, with the occurrence of one symptom often used to explain the occurrence of another. Reductions in physical and social functioning were often associated with the experience of multiple concurrent symptoms, particularly at times of high symptom severity. The participants' highlighted breathlessness and cough as being of particular salience, due to the association of these symptoms with fear of death and visibility and embarrassment in public. CONCLUSIONS: People with lung cancer experience multiple concurrent symptoms and perceive relationships between the symptoms experienced. Within the experience of multiple symptoms, people with lung cancer highlight individual symptoms that are of particular importance, based on their concomitant meanings. Such findings provide vital information for the future development of meaning-based symptom cluster interventions.

Patient-reported outcome measures for the identification of supportive care needs in people with lung cancer: are we there yet?

BACKGROUND: The use of patient-reported outcome measures is a method of identifying and addressing supportive care needs (SCN) of people with lung cancer, which are often overlooked. OBJECTIVE: The objectives of this study were to identify and evaluate existing SCN tools previously used in studies with patients with lung cancer and to establish their suitability for use in research and clinical practice. METHODS: A systematic search was carried out in the MEDLINE, CINAHL, EMBASE, PsychINFO, and British Nursing Index databases to locate studies conducted between January 2000 and November 2010 that made use of validated self-report SCN tools with patients with lung cancer. RESULTS: Twelve articles introducing 8 instruments met prespecified selection criteria. All tools were appraised for their content, comprehensiveness, appropriateness, psychometric properties, and feasibility and acceptability. Only 1 lung cancer-specific SCN tool was identified. Whereas the majority of tools had acceptable psychometric properties, only 1 tool had gone through a systematic development process specifically in the context of lung cancer. Therefore, it is questionable whether existing tools can adequately identify healthcare needs that people with lung cancer consider most important. CONCLUSIONS: To ensure that SCNs of people with lung cancer are adequately and promptly identified, rigorous development and systematic testing of content-specific SCN tools are warranted. IMPLICATIONS FOR PRACTICE: Collaborative work between patients with lung cancer, health professionals, and tool developers is required for an SCN tool not only to be content-specific but also to take into consideration the reality of clinical practice in providing supportive care to people with lung cancer.

A systematic review of supportive care needs of people living with lung cancer.

BACKGROUND AND PURPOSE: Supportive care for people living with a diagnosis of lung cancer is paramount. The purpose of this systematic review was to determine the supportive care needs of people with lung cancer, and explore trends and gaps in the assessment of these needs emerging from this literature. METHODS: Through use of a wide range "free text" terms, a systematic search of five electronic databases (Medline, CINAHL, EMBASE, PsychINFO and BNI) was carried out for the period between January 2000 and September 2012. Two validated scoring systems were used to appraise eligible studies for methodological quality and level of evidence. RESULTS: Based on pre-specified selection criteria, 59 articles (25 of quantitative methodology; 34 of qualitative methodology) reporting on 53 studies were retrieved and considered for further analysis. Overall, studies were of acceptable methodological quality. A wide spectrum of health care needs was evident among people with lung cancer. These needs were classified into nine domains: physical; daily living; psychological/emotional; spiritual/existential; informational; practical; patient-clinician communication; social and family-related; and cognitive. Daily living, practical, and cognitive needs were given less attention in this literature. CONCLUSIONS: People with lung cancer have a complex array of supportive care needs that impact on various life aspects. Yet, our knowledge still remains fragmentary. Embarking on new longitudinal exploratory studies and well-designed clinical trials is therefore strongly encouraged. The use of patient reported outcome measures as a clinical intervention tool may be viewed as a means of identifying and managing unmet needs in this patient population.