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M. Hesdorffer
Moderator of
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ED 05 - Case Presentations (3 Lung Cancer and 1 Mesothelioma) Discussed in Round Table Format (ID 5)
- Event: WCLC 2015
- Type: Education Session
- Track: Nursing and Allied Professionals
- Presentations: 7
- Moderators:M. Duffy, M. Hesdorffer
- Coordinates: 9/07/2015, 14:15 - 15:45, 708+710+712
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Introduction (ID 2052)
14:15 - 15:45 | Author(s): M. Duffy
- Abstract
- Presentation
Abstract not provided
Only Members that have purchased this event or have registered via an access code will be able to view this content. To view this presentation, please login, select "Add to Cart" and proceed to checkout. If you would like to become a member of IASLC, please click here.
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ED05.01 - Nursing (ID 1788)
14:15 - 15:45 | Author(s): P. Palmer
- Abstract
Abstract not provided
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ED05.02 - Respiratory Therapy (ID 1789)
14:15 - 15:45 | Author(s): L. Di Fabrizio
- Abstract
Abstract not provided
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ED05.03 - Approach to Offering Remote Support to Mesothelioma Patients: The Mesothelioma Survivor Project (ID 1790)
14:15 - 15:45 | Author(s): G. Bates, T. Bressler, A.K. Hashmi, J. Zajac, G. Shelton, E. Smith, Y. Bressler, R. Taub, M. Hesdorffer
- Abstract
- Presentation
Abstract:
Background: From the moment of diagnosis, malignant mesothelioma (MM), decreases health-related quality-of-life (QOL) in patients and their caregivers. In addition to the symptoms of the disease itself, aggressive treatments options such as surgery, radiation, and chemotherapy can cause side effects which border on the intolerable. Specifically, chemotherapy is associated with side effects such as fatigue, nausea, vomiting, and systemic pain which has been described as unpleasant and stressful. The side effects of treatments can be burdensome enough to lead to noncompliance or outright refusal of continuation of care. Data from 13 frequently cited QOL studies conducted in the United States and Europe between 1990 and 2009 focus on chest pain and shortness of breath as the two chief symptoms of pleural mesothelioma. The largest QOL study to date, conducted across five continents, enrolled 495 patients in a multicenter study evaluating MM using the LCSS (lung cancer symptom scale). Investigators reported the most common symptoms as: fatigue (94%), dyspnea (89%), loss of appetite (86%), Chest pain (85%), cough (75%), and hemoptysis (24%). Ninety-two percent of patients experienced three or more above symptoms. Research on the psychological aspects of patients living with mesothelioma has shown their disregard for their exposure to asbestos in respect to their diagnosis. One such study investigated the reactions of 38 patients upon diagnoses with mesothelioma. Interestingly, although most patients had exposure to asbestos, only 17% of patients reported being concerned about their health prior to diagnosis, and, perhaps most interestingly, 65% of those with asbestos exposure denied anger towards the asbestos industry. Such studies’ preliminary findings suggest the need for better information about asbestos and mesothelioma, especially for high-risk individuals. Mesothelioma has a number of emotional consequences as well. A study conducted by the British Lung Foundation (BLF) reported significant impairment of emotional function and/or emotional state in patients with mesothelioma and their family members. The BLF’s study further reported a more positive response amongst patients versus caregivers in regards to supportive treatment to their emotional functioning. However, the authors did not provide a definition for significantly impaired emotional functioning, opacifying the results of such support. Recent psychological studies have demonstrated health benefits in cancer patients when sharing their illness experiences through online blogs. It has been suggested that blogging creates a survivor identity and facilitates a social support network for patients. Further, studies suggest that expressive writing increases self-management of chronic pain and lowers depressive symptoms. Methods: The platform for the support group was remote, consisting of both online and telephone domains. Each participant received an email a week prior to support sessions with an access code to the online and phone conference systems. Participants would utilize both online and phone systems during sessions, which were held once a week during evenings for a total of 6 weeks. Sessions were guided (by a team of healthcare professionals consisting of: a social worker, nurse, and community group leader) and kept closed, available only to those affected by mesothelioma – confidentiality was kept strong to encourage dialogue. The only non-patient participants were the group’s facilitators. The platform facilitated anonymity, should a patient have wished to remain so. Session summaries and follow-up information were provided online after support meetings. Conclusions: Active participation in a guided support group allowed participants to share their feelings and concerns about their diagnosis without feeling judged by their peers or healthcare providers while getting the emotional, mental, and post-active treatment support they needed facilitating the transition to follow-p care. The online portion of the platform was particularly helpful in assuaging common negative concerns like: fear of healthcare provider judgment, confidentiality, self-editing, emotional backlash from loved ones, and disapproval of lifestyle post-active treatment. Analysis of support session dialogue allowed facilitators to gauge information available to patients as well as to provide information about life after active treatment. Online space (on our blogs) gave participants a place to provide more communicative responses outside the main dialogue of support sessions.
Only Members that have purchased this event or have registered via an access code will be able to view this content. To view this presentation, please login, select "Add to Cart" and proceed to checkout. If you would like to become a member of IASLC, please click here.
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ED05.04 - Physician Assistant (ID 1791)
14:15 - 15:45 | Author(s): H. Grillo
- Abstract
Abstract not provided
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ED05.05 - PharmD (ID 1792)
14:15 - 15:45 | Author(s): E. McGrath
- Abstract
Abstract not provided
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ED05.06 - Nurse Practitioner (ID 1793)
14:15 - 15:45 | Author(s): M. Turner
- Abstract
Abstract:
Multi-disciplinary care has become an essential part of medicine, especially in oncology. This care is not limited to the disciplines of medical, surgical and radiation oncology. We as providers must start, if we haven't already, expanding our thinking to involving other disciplines such as nutrition, social work, respiratory therapy, palliative care, physical therapy, psychiatry etc. Even though medicine is becoming more personalized with targeted therapies, we cannot allow this to narrow our focus of treating the patient as a whole. Our panel of experts from different disciplines will review and discuss lung cancer and mesothelioma cases highlighting the importance of a multi-disciplinary approach to patient care.
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ORAL 43 - Enhancing Physical Wellbeing in Lung Cancer (ID 168)
- Event: WCLC 2015
- Type: Oral Session
- Track: Nursing and Allied Professionals
- Presentations: 8
- Moderators:G. Bates, M. Hesdorffer
- Coordinates: 9/09/2015, 18:30 - 20:00, 102+104+106
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ORAL43.01 - Guideline for Patient Information on Enhanced Recovery in Thoracic Surgery (ID 185)
18:30 - 20:00 | Author(s): J. Mitchell
- Abstract
- Presentation
Background:
On behalf of the Thoracic Surgery Group, National Lung Cancer Forum for Nurses The Thoracic Surgery Group is a sub-group of the National Lung Cancer forum for Nurses with a membership of thoracic nurse specialists, lung cancer nurse specialists, research nurses and allied health professional. The objective of the group is to develop links to other health professionals working within the specialism of thoracic surgery to enhance the care and support of patients undergoing surgical procedures for suspected or confirmed thoracic malignancies. The group has previously produced guidelines on supporting patients having lung resection surgery and telephone follow-up following thoracic surgery. Enhanced recovery is an approach to the care of patients undergoing surgery that aims to ensure that patients are in the best possible condition for surgery, have the best possible management during and after their operation, and experience the best post-operative rehabilitation. Patients on enhanced recovery programs are partners in their care pathways. This guideline has been developed, by a multi-professional group, to provide guidance to healthcare professionals involved in providing patient information on enhanced recovery programs.
Methods:
Following a literature review and review of practice in UK thoracic surgery centers the group have developed this guidance on the information required by patients undertaking an enhanced recovery program. Guidance is provided about: Thoracic surgery enhanced recovery program information Written patient information Verbal patient information Information about the enhanced recovery pathway Information about thoracic surgery Patient diary Quality assurance and patient information
Results:
Central to the enhanced recovery concept is the involvement, empowerment and partnership with the patient. Evidence shows that patients participating in enhanced recovery programs have fewer post-operative complications and reduced rates of readmission. To increase understanding of the enhanced recovery pathway it is vital that patients are provided with relevant information. The aim of this guideline is to support the provision of patient information regarding enhanced recovery programs so that patients are in partnership with healthcare professionals thereby improving patient experience and clinical outcomes. This guideline is based on evidence available and identified best practice in UK thoracic surgical centers.
Conclusion:
The guideline is relevant to all thoracic surgery centers that are running or wish to set up an enhanced recovery program, it could also be adapted for other surgical specialties. This guideline is a series of broad statements and where necessary local procedures should be developed to complement the guideline in each clinical area. This document compliments the ‘Guideline for Telephone Follow-up for Patients Undergoing Thoracic Surgery’ and the ‘Guideline to Prepare and Support Patients Undergoing Lung Resection’ also produced by the Thoracic Surgical Group. All of the guidance produce by the group are available on the National Lung Cancer Forum for Nurses (NLCFN) website
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ORAL43.02 - Which Patients Are Assessed by a Lung Cancer Nurse Specialist: A UK National Lung Cancer Audit Study (ID 1258)
18:30 - 20:00 | Author(s): A. Khakwani, R.B. Hubbard, P. Beckett, D. Borthwick, A.M. Tod, A. Leary, J. White, L.J. Tata
- Abstract
- Presentation
Background:
Lung cancer nurse specialists (LCNS) are an integral part of the multidisciplinary team, supporting, managing and coordinating of care for people with lung cancer. In the UK the National Institute of Health and Care Excellence (NICE) recommends that all patients have access to a LCNS in a trust, but recent National Lung Cancer Audit (NLCA) reports show that LCNS access varies across England. The aim of this study was to examine how access to a LCNS varies by patient and National Health Service (NHS) trust characteristics.
Methods:
We used data on all lung cancer patients in the NLCA first presenting to 150 English NHS trusts between January 1[st] 2007 and December 31[st] 2011. NHS trusts are health care organisations typically 1-3 hospitals collectively covering regional catchment populations. The NLCA collects key clinical information, including LCNS assessment on all individuals with a diagnosis of lung cancer presenting to NHS trusts. Data from 146/150 trusts were successfully linked with the National Cancer Action Team (NCAT) census of the LCNS workforce (number, salary grades) for 2011. Multinomial logistic regression was used to calculate the likelihood of being assessed by a LCNS by patients clinical and LCNS workforce at each trust.
Results:
Across 146 NHS trusts there were128,124 patients and 321 LCNSs. LCNS assessment records showed80,113 (62%) patients were assessed, 7,544 (6%) were not assessed, and 40,467 (32%) had missing information on assessment. Missing assessment information was random and not biased to certain types of patients or trust and data completeness increased over the years. Patients (>75 years old), those with poor performance status (i.e. PS 4) and those with comorbidities were less likely to be assessed (adjusted relative risk ratios (RRR) (95% confidence interval) 0.84 (0.75 – 0.93), 0.34 (0.24 – 0.47) & 0.71 (0.63 – 0.79) respectively). There was no difference in assessment rates by socioeconomic groups. Patients who received anti-cancer treatment (surgery, chemotherapy with radiotherapy or chemotherapy alone) were over twice likely to have been assessed by a LCNS compared with those who did not receive treatment 2.09 (1.75 – 2.50), 3.96 (3.11 – 5.04) & 3.45(2.71 – 4.38). Annual LCNS patient caseload did not appear to impact access, but there was an association between assessment and a higher salary grade of the LCNS workforce in a trust (RRR 1.59 (0.86 – 2.92) for trusts with LCNS salary band 7 & 8).
Conclusion:
We found variations in access to LCNSs by both patient and trust a feature, which indicates an unmet need for people with lung cancer in England. To meet the needs of all people with lung cancer and the clear targets set out by NICE, we need to expand the current LCNS workforce and ensure that we retain experienced nurses as LCNS are an integral part of the lung cancer team and provide help to people with lung cancer.
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ORAL43.03 - The Rationale of Exercise in Patients with Inoperable Lung Cancer (ID 2554)
18:30 - 20:00 | Author(s): M. Quist, S. Langer, L. Adamsen, M. Roerth
- Abstract
- Presentation
Background:
Patients with lung cancer often experience severe physical and psychological symptoms, such as decreased exercise capacity, muscle weakness, compromised health-related quality of life (HRQOL) and increased anxiety and depression levels, as a direct consequence of the disease or the antineoplastic therapy. The main concern of patients with lung cancer is the fear of losing independence and not being able to perform daily activities. In recent years, several studies show that exercise training is safe, feasible and beneficial for patients with inoperable lung cancer. Results have shown increased physical capacity, increases muscle strength and functionality, and reduced anxiety and depression levels.
Methods:
This presentation will focus on the rationale of exeicse in patients with inoperable lung cancer and will present results from the EXHALE study, a prospective, clinical and explorative study.
Results:
Patients showed significant improvement in physical capacity, functional capacity, muscle strength and “emotional well-being”, as well as a significant reduction in “social well-being” and the level of anxiety. No serious adverse events (SAE) or adverse events (AE) were reported.
Conclusion:
This presentation will document that the patients with inoperable lung cancer are able to complete a six-week exercise and relaxation intervention without exercise-related SAE. In addition we can conclude that patients with inoperable lung cancer can increase VO2max, functional capacity (6MWD)and muscle strength significantly. We also found that the intervention significantly reduced the patients’ level of anxiety. The patients did not improve their HRQOL significantly, but we did observe a significant improvement in emotional well-being
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ORAL43.04 - Discussant for ORAL43.01, ORAL43.02, ORAL43.03 (ID 3447)
18:30 - 20:00 | Author(s): M. Davies
- Abstract
- Presentation
Abstract not provided
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ORAL43.05 - Development and Evaluation of Health and Wellbeing Events for People Affected by Lung Cancer (ID 891)
18:30 - 20:00 | Author(s): S. Moore, M. Johnson, N. Doyle, B. Quinn, L. Askins, D. Brown, L. Eldridge, M. Evans, R. Hargreaves, B. Hartley, L. Hutton, K. Jones, C. L'Hermenier, J. Vick, T. Wiseman
- Abstract
- Presentation
Background:
In the UK, Health and Wellbeing Events for people with cancer have developed as part of the National Cancer Survivorship Initiative. They are aimed at supporting people living with and beyond cancer to live as healthy and active lives as possible for as long as possible (Richards et al 2011). They are designed to provide an opportunity for people with cancer and their family members to gain information and support, to help them manage the consequences of cancer and make positive life-style changes where appropriate (NCSI 2013). Early pilot work suggests events of this kind may not only benefit attendees in terms of improved levels of knowledge, confidence and physical and emotional wellbeing, but may also lead to more appropriate use of services, and potentially reduce unplanned consultations and admissions. However, to date, much of this early work has been in the context of breast and urological cancers, and there has been little exploration and evaluation of events aimed specifically at helping people affected by lung cancer (Office for Public Management/Macmillan Cancer Support 2011). The poster will address this knowledge deficit by reporting data from an ongoing collaborative project undertaken at three London NHS Foundation Trusts. The project aims to develop and evaluate a series of Lung Cancer Health and Wellbeing Events. Specifically, data will describe the process of developing and delivering events for people with lung cancer, and identify the perceived feasibility, acceptability and usefulness of these events from the perspective of attendees (patients and their family members/close friends) and professionals involved in organising the events.
Methods:
Design: A prospective mixed method service evaluation including; 1) Event attendance rates and demographics (i.e. patient/family member, gender, age, ethnicity), 2) Participants’ perceptions of how useful the events are (using questionnaires administered immediately after the event and at 4-6 weeks), 3) Health professionals’ perceptions of the usefulness and impact of the events (using questionnaires and group discussions), 4) Analysis of the costs and resources required to host the events (e.g. professionals' time, administration and organisation, additional financial expenditure etc). Analysis: Descriptive statistics and qualitative thematic analysis will be used.
Results:
The poster will present data from the first two events held in 2015. At the time of writing, intial analysis from the first event suggests that although only a small proportion of patients with lung cancer may choose to attend these kinds of events (7% of 257 invited) , the experience of attendees (patients and family members) is reported as largely positive. For example, 71% (15/21) found the event ‘quite’ or ‘very helpful’ and 91% (20/22) would recommend it to others in a similar situation. Initial feedback from professionals is also positive whilst elucidating the resource required to develop and deliver events.
Conclusion:
Health and Wellbeing Events are a recent initiative in the UK to help support people living with and beyond a diagnosis of cancer. This poster will present results of an evaluation of lung cancers-specific events. The findings will indicate their feasibility, acceptability and accessibility to patients and family members, Implications for future service development and delivery will be discussed.
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ORAL43.06 - Improving Surviorship through Prehabiltiation for Thoracic Cancer Patients (ID 43)
18:30 - 20:00 | Author(s): K.J. Clayton, V. Beattie, J. Roberts, A. McIver, J. Draffen, M. Guerin, D. Hodges, K. Bridges
- Abstract
- Presentation
Background:
Prognosis for lung cancer is poor, with 5 year survival of 8.8% in men and 11.1% in women. (MCS 2013) It is essential to enhance performance status and timely access to treatment. NICE recommends that patients have access to specialist services from the start of the pathway. This includes the expertise of the Lung CNS (DOH 2011). It is essential that people with a thoracic malignancy have their health and wellbeing maximised before diagnosis and treatment decision to improve outcomes and quality of lie. The Lung CNS’s management of the pathway leads to improved treatment outcomes (NLCA 2013)
Methods:
Lung CNS’s have a consensus that pre-diagnosis services are currently ad hoc and inequitable. The NLCFN undertook literature reviews using key words “PREHABILITATION & LUNG CANCER”; this did not identify any significant results. The search was therefore widened to include “PULMONARY DISEASE”. This showed that the most common co morbidity associated with lung cancer was COPD. To understand Lung CNS practice, a short electronic survey was devised and distributed to all NLCFN members.
Results:
118 Lung CNS’s responded to the questionnaire (34%). Questions covered current practice with regard to: Symptom control, health promotion, co-morbidity management Availability of assessment tools. Availability of support/pre- rehabilitation services
Conclusion:
Following the literature search and questionnaire, the NLCFN devised a prompt checklist. This aide memoire captures key areas of assessments at pre-diagnosis to enable effective referrals to appropriate services which will ultimately improve the patients’ health and wellbeing in preparation for treatment.
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ORAL43.07 - Performance Status (PS): Is There a Correlation Between Doctor and Patient? (ID 203)
18:30 - 20:00 | Author(s): K.J. Clayton, L. Creech, K. Cannon, S. Iyer, M. Babores
- Abstract
- Presentation
Background:
PS is a very useful marker which is used to determine suitability for treatment on patients with lung cancer. Previous studies have shown good correlation between PS and survival. To assess the correlation between the Respiratory specialist (consultants and SpRs) and the patient’s own assessment.
Methods:
A random selection of patients attending our Rapid Access Lung Clinic were given, prior to the consultation with the doctor, the ECOG guidelines and were asked to score themselves.
Results:
50 patients were given the questionnaire but one preferred not to answer it. The results are reflected in the table below:
from Rapid Access Lung clinic on the same day without a diagnosis of malignancy Out of the patients that scored themselves higher than the doctors, only 2/ 14 gave themselves All the patients that did not have a PS documented by the doctor were discharged a score two points higher.Identical score 21 / 50 (42%) Patient score higher than doctor 14 / 50 (28%) Patient score lower than doctor 4 / 50 (8%) Not documented by doctor 11 / 50 (22%)
Conclusion:
Although nearly half of the scores between patients and doctors were the same there is a significant number of patients that scores themselves higher than the medical professionals. This is likely to be a combination of the fact that the doctors could be overlooking some co-morbidities and that they are keen to give the patient the best opportunity for treatment.
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ORAL43.08 - Discussant for ORAL43.05, ORAL43.06, ORAL43.07 (ID 3448)
18:30 - 20:00 | Author(s): B. Ivimey
- Abstract
- Presentation
Abstract not provided
Only Members that have purchased this event or have registered via an access code will be able to view this content. To view this presentation, please login, select "Add to Cart" and proceed to checkout. If you would like to become a member of IASLC, please click here.
Author of
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ED 05 - Case Presentations (3 Lung Cancer and 1 Mesothelioma) Discussed in Round Table Format (ID 5)
- Event: WCLC 2015
- Type: Education Session
- Track: Nursing and Allied Professionals
- Presentations: 1
- Moderators:M. Duffy, M. Hesdorffer
- Coordinates: 9/07/2015, 14:15 - 15:45, 708+710+712
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ED05.03 - Approach to Offering Remote Support to Mesothelioma Patients: The Mesothelioma Survivor Project (ID 1790)
14:15 - 15:45 | Author(s): M. Hesdorffer
- Abstract
- Presentation
Abstract:
Background: From the moment of diagnosis, malignant mesothelioma (MM), decreases health-related quality-of-life (QOL) in patients and their caregivers. In addition to the symptoms of the disease itself, aggressive treatments options such as surgery, radiation, and chemotherapy can cause side effects which border on the intolerable. Specifically, chemotherapy is associated with side effects such as fatigue, nausea, vomiting, and systemic pain which has been described as unpleasant and stressful. The side effects of treatments can be burdensome enough to lead to noncompliance or outright refusal of continuation of care. Data from 13 frequently cited QOL studies conducted in the United States and Europe between 1990 and 2009 focus on chest pain and shortness of breath as the two chief symptoms of pleural mesothelioma. The largest QOL study to date, conducted across five continents, enrolled 495 patients in a multicenter study evaluating MM using the LCSS (lung cancer symptom scale). Investigators reported the most common symptoms as: fatigue (94%), dyspnea (89%), loss of appetite (86%), Chest pain (85%), cough (75%), and hemoptysis (24%). Ninety-two percent of patients experienced three or more above symptoms. Research on the psychological aspects of patients living with mesothelioma has shown their disregard for their exposure to asbestos in respect to their diagnosis. One such study investigated the reactions of 38 patients upon diagnoses with mesothelioma. Interestingly, although most patients had exposure to asbestos, only 17% of patients reported being concerned about their health prior to diagnosis, and, perhaps most interestingly, 65% of those with asbestos exposure denied anger towards the asbestos industry. Such studies’ preliminary findings suggest the need for better information about asbestos and mesothelioma, especially for high-risk individuals. Mesothelioma has a number of emotional consequences as well. A study conducted by the British Lung Foundation (BLF) reported significant impairment of emotional function and/or emotional state in patients with mesothelioma and their family members. The BLF’s study further reported a more positive response amongst patients versus caregivers in regards to supportive treatment to their emotional functioning. However, the authors did not provide a definition for significantly impaired emotional functioning, opacifying the results of such support. Recent psychological studies have demonstrated health benefits in cancer patients when sharing their illness experiences through online blogs. It has been suggested that blogging creates a survivor identity and facilitates a social support network for patients. Further, studies suggest that expressive writing increases self-management of chronic pain and lowers depressive symptoms. Methods: The platform for the support group was remote, consisting of both online and telephone domains. Each participant received an email a week prior to support sessions with an access code to the online and phone conference systems. Participants would utilize both online and phone systems during sessions, which were held once a week during evenings for a total of 6 weeks. Sessions were guided (by a team of healthcare professionals consisting of: a social worker, nurse, and community group leader) and kept closed, available only to those affected by mesothelioma – confidentiality was kept strong to encourage dialogue. The only non-patient participants were the group’s facilitators. The platform facilitated anonymity, should a patient have wished to remain so. Session summaries and follow-up information were provided online after support meetings. Conclusions: Active participation in a guided support group allowed participants to share their feelings and concerns about their diagnosis without feeling judged by their peers or healthcare providers while getting the emotional, mental, and post-active treatment support they needed facilitating the transition to follow-p care. The online portion of the platform was particularly helpful in assuaging common negative concerns like: fear of healthcare provider judgment, confidentiality, self-editing, emotional backlash from loved ones, and disapproval of lifestyle post-active treatment. Analysis of support session dialogue allowed facilitators to gauge information available to patients as well as to provide information about life after active treatment. Online space (on our blogs) gave participants a place to provide more communicative responses outside the main dialogue of support sessions.
Only Members that have purchased this event or have registered via an access code will be able to view this content. To view this presentation, please login, select "Add to Cart" and proceed to checkout. If you would like to become a member of IASLC, please click here.
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GR 02 - Difficult Mesothelioma Cases (ID 15)
- Event: WCLC 2015
- Type: Grand Rounds
- Track: Thymoma, Mesothelioma and Other Thoracic Malignancies
- Presentations: 1
- Moderators:J. de la Garza, A. Rimner, A. Tsao
- Coordinates: 9/08/2015, 14:15 - 15:45, 102+104+106
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GR02.04 - Addressing the Needs of the Mesothelioma Patient Who Has Exhausted Treatment Options: Palliation and Support for Family and Patient (ID 1835)
14:15 - 15:45 | Author(s): M. Hesdorffer
- Abstract
Abstract:
The care of people with end-stage mesothelioma is complex due to the interplay of severe physical symptoms, intense psychological distress, and social factors related to mesothelioma being a fatal occupational disease. In comparison with people suffering from lung cancer, patients with mesothelioma experience more pain and greater negative impact on role and functioning and insomnia (1). Patients and family members should expect effective management of symptoms, support during the continuum of the illness and a rapid response to crisis. The high symptom burden experienced by patients with mesothelioma in the last year of life is shown in the table below (2):
Patients with incurable disease deserve and need to receive clear information and to share in the decision-making about each stage of their cancer journey. Once oncological treatments are exhausted, healthcare professionals hold the responsibility for helping patients and their families shift their expectation from “cure” to palliation of symptoms. A care plan for a good death needs to be sensitively eased into the clinical discussions, taking into account each individual patient’s preferences (3). In rare diseases such as mesothelioma a feeling of isolation tends to overwhelm the patient and their family. Unlike most cancers mesothelioma has an explained occupational and/or environmental cause. In many cases understanding that the fatal illness was caused by asbestos exposure due to neglect of health and safety precautions at work can lead to blame, anger, depression and inability to cope. The complicated processes concerning claims for welfare benefits and civil compensation litigation often exacerbate this psychological distress. Meeting the care needs of patients and their families in this situation requires a compassionate and specialised multi-disciplinary approach. Expert timely supportive and palliative care can address the burdens associated with advanced disease and guide the patient and family in accepting and planning for a good death. Transition to focus care on the family during the grief process completes the cycle in the care of the mesothelioma patient and family. Panel discussion will include the following areas: · Advanced education and the expanded role of a nursing team solely focused on mesothelioma (4). · The roles and availability of on-line, in person and telephone support groups · The need for early referral into palliative, supportive and hospice care References 1. Nowak AK, Stockler MR, Byrne MJ (2004) Assessing quality of life during chemotherapy for pleural mesothelioma: feasibility, validity, and results of using the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire and Lung Cancer Module. J Clin Oncol. Aug 1;22 (15):3172-80. 2. Clayson H (2007) Thesis: The Experience of Mesothelioma in Northern England. University of Sheffield. Available online at etheses.whiterose.ac.uk/1775/ 3. Pass HI, Hesdorfer M, Lake SE, Lake SA. (2012) 100 Questions and Answers about Mesothelioma. Third Edition 4. Moore S, Darlison L (2011) Improving the nursing care of patients with mesothelioma. Nurs Stand May 25-31;25(38):35-8Pleural mesothelioma: Symptoms in the last year of life Breathlessness 96% Social 16% Pain 91% Nausea 14% Cough 41% Fatigue 13% Weight loss 41% Dysphagia 11% Anxiety 31% Psychiatric 10% Anorexia (loss of appetite) 25% Constipation 8% Depression 19% Ascites 8% Sweating 18% Vomiting 5% Emotional disturbance 16% Painful metastasis 5%
