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.
The UK has the highest incidence of mesothelioma in the world. Evidence in the United States suggests that mesothelioma may disproportionately affect military veterans. However, there has been no investigation of the experience of UK veterans living with mesothelioma. The Military Mesothelioma Experience Study (MiMES) aimed to understand the experience and health/support needs of British Armed Forces personnel/veterans with mesothelioma. Methods: Semi-structured interviews were conducted with 13 veterans living with mesothelioma, and nine family members of veterans living with mesothelioma. Participants were recruited via charities and asbestos support groups. Data were analysed using thematic analysis. Results: Participants' experiences are presented using three themes, i) exposure to asbestos and awareness of asbestos related diseases, ii) using military strategies to cope with mesothelioma and iii) preferences for information and support. MiMES indicates that the nature and range of UK military veterans' asbestos exposure is varied and not limited to high risk occupations. Participants' knowledge of asbestos and experience of mesothelioma influenced their experiences of diagnosis. Participants had coping strategies influenced by their military experiences. Assistance in navigating health and military systems was considered beneficial, especially if support was provided by professionals with knowledge or experience of the military. Attributes which may inhibit veterans from seeking professional support are discussed. Conclusion: MiMES provides insight into how UK military veterans experience and cope with mesothelioma. Key implications focus on the role that Mesothelioma Nurse Specialists, Asbestos Support Groups and veterans groups play in providing acceptable support for UK veterans.
Background: The heritage of occupational and environmental asbestos exposure in Piedmont, Italy, is an enduring epidemic of malignant pleural mesothelioma (MPM). Pleural biopsy (PB) performed via thoracoscopy (or video-assisted thoracic surgery (VATS)) remains the diagnostic gold standard for patients with suspected mesothelioma. The aim of our study was to investigate the accuracy of PB via VATS and to analyze the diagnostic path of the patients who experienced an initial MPM misdiagnosis. Method: Patients who underwent PB by VATS for suspected MPM from 2004 to 2013 were analyzed. The Registry of Malignant Mesothelioma (RMM) records were examined to crosscheck incident cases and to recognize misdiagnosed MPM. Sensitivity and specificity of the initial PB assessment versus the final classification of cases by RMM were evaluated. Overall survival (OS) was estimated using the Kaplan-Meier method and compared using log-rank test.Result: Data of 552 patients were analyzed. Of those, MPM was diagnosed in 178 cases (32%) and no false-positive PBs were observed. Sensitivity and specificity were 93% and 100%, respectively. The number of false-negative PBs was 14 (2%). Of those, 10 (71%) had an initial diagnosis of chronic pleuritis, 3 (28.5%) of atypical mesothelial proliferation and 1 had reactive mesothelial proliferation. All of them reported a history of asbestos exposure and the correct diagnosis was reached after a median of 160 days (interquartile range 86-243) as follow: 9 (64%) after a further PB by VATS, 3 (22%) by cytology examination of a pleural effusion, 1 (7%) by fine-needle biopsy and 1 (7%) by open surgery. The median survival time of the patients with eventual MPM diagnosis was 13.8 months (CI 95%: 10.3-16.6).). Oneand 4-year survival were 52% and 10% in MPM PB positive cases and 50% and 19% in false-negative cases (P¼0.66) (Figure 1). Conclusion: When a history of asbestos exposure is reported and a strong clinical suspicion persists after a negative PB, iterative biopsy attempts should be considered. In high-volume centers, MPM misdiagnosis rate remains small and future advancement in diagnostic technologies could further increase the accuracy of diagnosis.
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