A systematic literature review comparing the psychological care needs of patients with mesothelioma and advanced lung cancer.

PURPOSE: Psychological distress which adversely affects a person's experience of cancer has been shown to be highly prevalent in patients with mesothelioma. Historically, the assumption has been made that the evidence guiding the supportive care needs for lung cancer is relevant to those with mesothelioma. The objective of the study was to evaluate if the psychological care needs differ between patients with pleural mesothelioma and those with advanced lung cancer. METHODS: A search of MEDLINE, CINAHL, PsycARTICLES, Psychology and Behavioural Sciences Collection, PsycINFO databases, grey literature and the Cochrane Library of Systematic Reviews identified 17 studies meeting a predefined inclusion criteria. These were critically appraised for quality. Data relating to psychological experiences was extracted which was then synthesised narratively and through a process of meta ethnography. RESULTS: Common themes identified across the studies created 10 key concepts. These were uncertainty, normality, hope/hopelessness, stigma/blame/guilt, family/carer concern, physical symptoms, experience of diagnosis, iatrogenic distress, financial/legal and death and dying. Key similarities and differences were identified between the mesothelioma and lung cancer evidence. CONCLUSIONS: There is limited research exploring the lived experiences of those with mesothelioma and lung cancer, with the majority of them having methodological and/or reporting concerns compromising the conclusions made. However, reoccurring themes in the evidence were found suggesting a number of areas where the psychological experience of mesothelioma differs from that of advanced lung cancer. These findings warrant further research to explore further and if proven, the need for the provision of specialist mesothelioma care services is affirmed.

Testing mapping algorithms of the cancer-specific EORTC QLQ-C30 onto EQ-5D in malignant mesothelioma.

BACKGROUND: In order to estimate utilities for cancer studies where the EQ-5D was not used, the EORTC QLQ-C30 can be used to estimate EQ-5D using existing mapping algorithms. Several mapping algorithms exist for this transformation, however, algorithms tend to lose accuracy in patients in poor health states. The aim of this study was to test all existing mapping algorithms of QLQ-C30 onto EQ-5D, in a dataset of patients with malignant pleural mesothelioma, an invariably fatal malignancy where no previous mapping estimation has been published. METHODS: Health related quality of life (HRQoL) data where both the EQ-5D and QLQ-C30 were used simultaneously was obtained from the UK-based prospective observational SWAMP (South West Area Mesothelioma and Pemetrexed) trial. In the original trial 73 patients with pleural mesothelioma were offered palliative chemotherapy and their HRQoL was assessed across five time points. This data was used to test the nine available mapping algorithms found in the literature, comparing predicted against observed EQ-5D values. The ability of algorithms to predict the mean, minimise error and detect clinically significant differences was assessed. RESULTS: The dataset had a total of 250 observations across 5 timepoints. The linear regression mapping algorithms tested generally performed poorly, over-estimating the predicted compared to observed EQ-5D values, especially when observed EQ-5D was below 0.5. The best performing algorithm used a response mapping method and predicted the mean EQ-5D with accuracy with an average root mean squared error of 0.17 (Standard Deviation; 0.22). This algorithm reliably discriminated between clinically distinct subgroups seen in the primary dataset. CONCLUSIONS: This study tested mapping algorithms in a population with poor health states, where they have been previously shown to perform poorly. Further research into EQ-5D estimation should be directed at response mapping methods given its superior performance in this study.

A multicentre non-blinded randomised controlled trial to assess the impact of regular early specialist symptom control treatment on quality of life in malignant mesothelioma (RESPECT-MESO): study protocol for a randomised controlled trial.

BACKGROUND: Malignant pleural mesothelioma is an incurable cancer caused by exposure to asbestos. The United Kingdom has the highest death rate from mesothelioma in the world and this figure is increasing. Median survival is 8 to 12 months, and most patients have symptoms at diagnosis. The fittest patients may be offered chemotherapy with palliative intent. For patients not fit for systemic anticancer treatment, best supportive care remains the mainstay of management. A study from the United States examining advanced lung cancer showed that early specialist palliative care input improved patient health related quality of life and depression symptoms 12 weeks after diagnosis. While mesothelioma and advanced lung cancer share many symptoms and have a poor prognosis, oncology and palliative care services in the United Kingdom, and many other countries, vary considerably compared to the United States. The aim of this trial is to assess whether regular early symptom control treatment provided by palliative care specialists can improve health related quality of life in patients newly diagnosed with mesothelioma. METHODS: This multicentre study is an non-blinded, randomised controlled, parallel group trial. A total of 174 patients with a new diagnosis of malignant pleural mesothelioma will be minimised with a random element in a 1:1 ratio to receive either 4 weekly regular early specialist symptom control care, or standard care. The primary outcome is health related quality of life for patients at 12 weeks. Secondary outcomes include health related quality of life for patients at 24 weeks, carer health related quality of life at 12 and 24 weeks, patient and carer mood at 12 and 24 weeks, overall survival and analysis of healthcare utilisation and cost. DISCUSSION: Current practice in the United Kingdom is to involve specialist palliative care towards the final weeks or months of a life-limiting illness. This study aims to investigate whether early, regular specialist care input can result in significant health related quality of life gains for patients with mesothelioma and if this change in treatment model is cost-effective. The results will be widely applicable to many institutions and patients both in the United Kingdom and internationally. TRIAL REGISTRATION: Current controlled trials ISRCTN18955704. Date ISRCTN assigned: 31 January 2014.

The impact of individual quality of life assessment on psychosocial attention in patients with chest malignancies: a randomized study.

PURPOSE: The aims of this study were to investigate the impact of individual health-related quality of life (HRQL) evaluation on the attention towards symptom control and psychosocial function in advanced cancer patients. METHODS: Patients with advanced lung cancer or mesothelioma who attended a pulmonary oncology outpatient clinic were randomized to either of two strategies for HRQL assessment. The experimental group (EG) answered the EORTC QLQ-C30 + LC13 questionnaire using a digital table interface, with outprint of aggregated scale scores presented to the consulting physician as a support for evaluation. The control group (CG) answered a paper version of the same questionnaire, which was stored for later analysis. Consultations were audio-recorded. Outcome measures were a quantitative content analysis of audio-recorded consultations and medical and psychosocial interventions abstracted from clinical records. RESULTS: One hundred seventy-one patients were randomized and participated in the study. Issues regarding emotional function were more frequently discussed during consultations in the EG (p < 0.05). Similarly, interventions directed to emotional and social concerns were more frequent in the EG (p = 0.013 and p = 0.0036, respectively). HRQL measures over time were similar across the groups. CONCLUSION: Individual HRQL assessment increased the attention to psychosocial functioning in patients with chest malignancies.

What should a support program for people with lung cancer look like? Differing attitudes of patients and support group facilitators.

INTRODUCTION: Patients with lung cancer have higher levels of unmet need for psychosocial support than those with other cancers. However, uptake of existing support programs by patients with lung cancer is low. We explored this issue by seeking the views of patients and support group facilitators. METHODS: Surveys of a convenience sample of 100 patients with lung cancer and all support group facilitators registered with Cancer Council Victoria (n = 145) were performed. Respondents were asked about preferred content, location, running, and potential barriers to attendance of a lung cancer support program. RESULTS: The response rate from facilitators was 51%. Fifty-three percent of patients reported willingness to attend a support program, although only 12% had previously attended a group. Patients showed a preference for any program to be held at a hospital (p = 0.01), whereas facilitators preferred a community setting (p < 0.001). Patients preferred facilitation by a health professional, rather than a volunteer p < 0.001), whereas facilitators preferred a volunteer. Patients preferred sessions primarily focused on cancer information provision rather than emotional support, whereas facilitators rated emotional support as highly as cancer information. Overall, patients perceived fewer barriers to attendance than facilitators. Both agreed that a group environment, discussing their cancer, parking, and travel were barriers to attendance. CONCLUSIONS: Disparities in the views of patients and facilitators about the preferred location, type of facilitator, and content of a support program may in part explain the poor uptake of existing support programs by patients with lung cancer and should be considered in the design of future programs.

Palliative physicians persuade procurators fiscal.

Mesothelioma caused by occupational exposure to asbestos is well recognized and sufferers who have been employed in a prescribed occupation can claim compensation. Stringent criteria must be fulfilled in order to establish the link between occupational exposure and mesothelioma, and to this end the procurator fiscal is involved after the patient's death, both to elucidate the individual situation and 'for the common good'. Problems were experienced locally by the use of uniformed police officers, as the appointed Crown agents, as interviewers of recently bereaved relatives, irrespective of the degree of tact and sensitivity shown. The likelihood of an autopsy was also distressing. It is important to recognize the role of the procurator fiscal and to ensure that workers' compensation procedures exist and are followed. However, in order to minimize grief and distress to relatives, discussion took place with the local procurator fiscal. He was appreciative of the issues raised and practice has now changed substantially. In particular, police officers are no longer required to interview relatives either for the purpose of identification or to ascertain the deceased's occupational history. A pro forma has been produced and agreed locally to obviate the need for medical staff to be interviewed by police officers. Following subsequent discussion with the Crown Office our local arrangements have been incorporated in Crown Office guidance for national use.