Physician requests by patients with malignant pleural mesothelioma in Japan

Abstract

Background Malignant pleural mesothelioma (MPM) is a fatal and rare disease that is caused by the inhalation of asbestos. Treatment and care requests made by MPM patients to their physicians were collected and analyzed. Methods This cross-sectional survey was part of a larger study ( N = 133) regarding the quality of life of MPM patients. Specific responses to two open-ended questions related to patients’ requests regarding treatment and care were quantified, analyzed and divided into categories based on content. Results Responses ( N = 217) from MPM patients ( N = 73) were categorized into 24 subcategories and then abstracted into 6 categories. The majority of requests were related to patient-physician communication. Patients wanted clear and understandable explanations about MPM and wanted their physician to deliver treatment based on the patient’s perspective by accepting and empathizing with their anxiety and pain. Patients expected physicians to be dedicated to their care and establish an improved medical support system for MPM patients. Conclusion Patients with MPM had a variety of unmet needs from their physicians. Physicians who provide care to MPM patients should receive training in both communication skills and stress management. A multidisciplinary care system that includes respiratory and palliative care for MPM patients should be established. Electronic supplementary material The online version of this article (10.1186/s12885-019-5591-7) contains supplementary material, which is available to authorized users.

What are the psychological effects of mesothelioma on patients and their carers? A scoping review

“…However, alongside the certainty came distressing uncertainty about disease progression and the future 6,35 . Issues of timing caused distress at diagnosis, for example, the appointment not being long enough; inappropriate levels of information about the illness and compensation 32,33,40 …”

“…Issues around the sharing of information and positive/negative aspects of communication (Table 1) were reported by 16 articles. In Nagamatsu et al's 40 study of patients' requests to doctors, most focused on communication. Inept or thoughtless information delivery caused huge distress and hopelessness.…”

“…The timing of compensation/benefits information needed special care 6 . Participants wanted clear, understandable explanations, with opportunity to ask questions 32,40 . Getting accurate information at the right time could be very helpful, for example, by lessening worries about progression, or giving comfort and a feeling of agency about finances 6,30,40 …”

“…The importance of getting the balance right for each individual was stressed, using a customised, patient‐centred approach to reflect the huge variation in what people want and can take in Reference 32,33,40. Whilst the majority of Nagamatsu et al's 40 participants wanted honesty, a significant minority preferred only good news.…”

“…Effective multi‐disciplinary team‐working meant informing specialist nurses immediately mesothelioma was suspected; BBN was shared across the team; participants knew what to expect; and hope could be maintained 12,32 . A kind, warm, inclusive way of talking was appreciated 32,40 . Caseworkers were useful for communicating across the gap between physicians and patients/carers, and providing much needed individual emotional support 15,33 …”