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Angela Mary Tod



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    ES07 - Beyond the Diagnosis - Collaborative Care for Change (ID 775)

    • Event: WCLC 2018
    • Type: Educational Session
    • Track: Nursing and Allied Professionals
    • Presentations: 1
    • Now Available
    • Moderators:
    • Coordinates: 9/26/2018, 13:30 - 15:00, Room 205 BD
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      ES07.05 - Research Update: Patient’s Perspective on Living with Malignant Pleural Mesothelioma (Now Available) (ID 11382)

      14:30 - 14:50  |  Presenting Author(s): Angela Mary Tod

      • Abstract
      • Presentation
      • Slides

      Abstract

      Malignant pleural mesothelioma (MPM) is an aggressive, rare cancer due to exposure to and inhalation of asbestos (Odgerel et al 2017). Incidence is higher in certain occupational groups including asbestos mining and disposal and construction industries (Rake et al 2009). Rates vary within and across countries. The UK has approximately 2700 new diagnosis a year, one of the highest internationally. Rates of MPM show no signs of reducing and global incidence and burden is likely to be underreported due to poor data capture in some countries. Whilst asbestos use has drastically reduced in developed countries, significant amounts of asbestos are still used in India, China, Russia, and some developing countries (Frank&Joshi 2016)

      The latency period for MPM varies from 30 and 50 years with an average of 40. Occasionally exposure to diagnosis can be 10 years or less, but this is uncommon.

      MPM is an incurable cancer but there are new treatments offering promise in terms of length of life and palliation of symptoms. New radical surgical procedures are being performed and novel drug treatments provide better patient outcomes. In addition there are new procedures for the consequences of MPM such as trapped lung and malignant pleural effusion (MPE).

      Although showing no signs of the global burden reducing, and the increase of new treatment and procedures, there is little research exploring the experience of living with mesothelioma from the perspective of the person with the disease and their family. This presentation will shine a light on existing research, and provides us with an understanding of the experiences of living with MPM. It will draw on the wider literature as well as recent and current studies being conducted by the author and colleagues. International literature will be included but many references will be to the UK context.

      The journey of the person with MPM will provide the structure for the presentation. Starting with the long road to diagnosis, the experiences of coming to terms with and understanding the diagnosis will be considered. This will be followed by research on people’s experiences of treatment and trials and care related to end of life. An underpinning theme will be balancing the bleak with the positive.

      The diagnostic process is a challenging experience for patients. Many people describe it as a long and winding road, full of dead ends and false trails, as other possible diagnosis are offered prior to confirmation of MPM. For others whose first symptom is a MPE the distress of the symptoms are compounded by the shock of being delivered a terminal diagnosis. Although challenging, for some actually getting a diagnosis confirmed has the benefit of the end of uncertainty.

      Understanding and coming to terms with a MPM diagnosis is fraught and perplexing. Not only is the diagnosis life limiting, it was due to exposure to asbestos many years ago. The extent to which people remember and expected consequences of this exposure will impact upon ability to accept the diagnosis.

      It is not uncommon for people to have never heard of MPM and people can struggle to understand the nature of the tumour and their prognosis. Many people see cancer as a solid tumour or lump, so a diffuse cancer such as MPM is difficult for people to understand. Balancing the needs of patients and family members can be difficult especially if they conflict in terms of the nature of information and the time in the pathway it is requested. Prognostic facts are an example as patients and family carers may differ when and if they want such information.

      For those with a MPE, there is an urgency to have that treated. Unless the MPE and related symptoms are addresses, people are unable to assimilate information about the underlying diagnosis of MPM. This highlights the importance of timing related to information delivery.

      As new treatments become available, this will increase the information burden for patients. There are also challenges regarding decision making and tolerating the burden of treatments and interventions (Hughes&Arber 2008, Clayson et al 2005). People will have to understand procedures and eligibility criteria for treatments and face the consequences of being eligible or not eligible. Finding themselves not eligible can be experienced as a ‘failure’ as well as a loss of hope. For those receiving aggressive treatments they will have to endure any potential side effects and consequences.

      Legal and compensation processes add additional challenges to the patient journey. Again there may be a time pressure for people to resolve this for family members before the person with MPM dies (Hughes&Arber 2008).

      Finally research findings regarding end of life are considered, including the access to timely palliative care, pressures on family members in coping with MPM as an industrial disease requiring post-mortem and coroner involvement (Clayson et al 2005).

      Psychosocial impacts emerge across the pathway as patient’s and carers deal with stress, shock, changes to identify, relationships and the demands of managing uncertainty.

      Throughout the pathway, research indicates the need for people with MPM to balance out the bleak with the positive (Taylor 2018). Understanding this can help health professionals better meet the needs of patients and family.

      Much of the research on MPM experience highlights the enormity and range of information people have to take on board. Some of this has a time pressure as it is linked to treatment or trial decisions.

      In conclusion, the contribution of Relationship-centred care’ (RCC) will be considered. This expands on and enhances the notion of person-centred care. The proposition is that RCC will help address the complex and challenging nature of improving the MPM patient and carer experiences (Taylor et al 2018).

      The experience of patient and family carers experiences of MPM is relatively unexplored. We need more evidence to help us understand what is important to them and how care priorities can best be met. At the impact of increased asbestos use in developing countries emerges, with an increase in asbestos related diseases, research to illuminate patients perspectives and experiences in those nations will be required.

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    MA12 - Mesothelioma Surgery and Novel Targets for Prognosis and Therapy (ID 913)

    • Event: WCLC 2018
    • Type: Mini Oral Abstract Session
    • Track: Mesothelioma
    • Presentations: 1
    • Now Available
    • Moderators:
    • Coordinates: 9/25/2018, 10:30 - 12:00, Room 202 BD
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      MA12.01 - The Information Pathway to Randomisation: Patients Experience of the Mesothelioma and Radical Surgery (MARS2) Feasibility Trial (Now Available) (ID 11200)

      10:30 - 10:35  |  Presenting Author(s): Angela Mary Tod

      • Abstract
      • Presentation
      • Slides

      Background

      The Mesothelioma and Radical Surgery 2 (MARS 2) trial was established in the UK to evaluate the role of radical surgery, (Pleurectomy decortication), for the treatment of malignant pleural mesothelioma (MPM). It compares chemotherapy and surgery to chemotherapy alone. The feasibility trial included a nested qualitative sub-study. The sub study aimed to 1) understand the patient experience of MARS2 trial process and interventions and 2) Identify any information and support needs required by patients. We present here the results related to MARS2 participant’s information experiences and needs at the point of randomisation. Implications for information provision to enhance patient experience and overcome recruitment barriers1 within MPM trials are considered.

      a9ded1e5ce5d75814730bb4caaf49419 Method

      41 in-depth longitudinal qualitative methods were used with 15 participants following randomisation. 9 participants received chemotherapy and surgery and 6 received chemotherapy alone. Interviews were conducted following randomisation, and at 6 and 12 months after the initial interviews. Participants randomised to surgery also had an interview after post-operative discharge. Data was collected between August 2015 and March 2017 and analysed using Framework analysis2

      4c3880bb027f159e801041b1021e88e8 Result

      The findings provide insight into the challenging context within which potential participants have to assimilate knowledge about a trial such as MARS2. Prior to hearing about the trial participants had encountered a diverse range of new and concerning experiences. These included worrying symptoms, diagnostic tests, investigations and the drainage of litres of fluid from the lung. They had to absorb an array of life-changing facts in a short time including that they had a rare incurable cancer with a poor prognosis; their illness was an occupational disease with legal and financial implications due to asbestos exposure. Participants attended their trial consultation soon after this challenging diagnostic information provision. The study reveals variations in understanding of the trial procedures, specifically decision-making regarding treatments, equipoise and the process of randomisation. Motivations for participating in the trial were identified along with preferences for information formats.

      8eea62084ca7e541d918e823422bd82e Conclusion

      This study provides unique insight into the information pathway of MPM trail participants, from diagnosis to randomisation. Results suggest that improvements in presentation of trial information and the development of formats that can be tailored to individual needs and preferred ways of learning, many enhance experience of and recruitment to MPM trials. Working with patients to co-produce information that communicates challenging concepts effectively, (such as randomisation and equipoise), may be a useful approach to meeting this challenge.

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    P3.07 - Nursing and Allied Professionals (Not CME Accredited Session) (ID 973)

    • Event: WCLC 2018
    • Type: Poster Viewing in the Exhibit Hall
    • Track:
    • Presentations: 2
    • Now Available
    • Moderators:
    • Coordinates: 9/26/2018, 12:00 - 13:30, Exhibit Hall
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      P3.07-06 - Receiving a Diagnosis Of MESOthelioma (RADIO Meso): Recommendations for Practice to Improve the Patient Experience (Now Available) (ID 11258)

      12:00 - 13:30  |  Author(s): Angela Mary Tod

      • Abstract
      • Slides

      Background

      Communicating a diagnosis of mesothelioma is complex and highly skilled1, 2. If done badly, ‘it can cause long lasting distress, confusion and resentment’1. Receiving A DIagnosis Of MESOthelioma (RADIO Meso) is a qualitative research project designed to identify ways to improve patient and family carer experience of receiving a mesothelioma diagnosis by generating evidence based recommendations for practice. This abstract provides an overview of the findings and a summary of recommendations.

      a9ded1e5ce5d75814730bb4caaf49419 Method

      The study utilised a descriptive qualitative approach. Individual telephone interviews were conducted with people who had experience of giving or receiving a diagnosis of mesothelioma. This included patients, family carers (N=16) and health care professionals (N=16). Two separate focus groups were also carried out with patients and carers (N=27) and mesothelioma nurse specialists (N=15). A national web-based consultation with staff and patients/ family carers was then undertaken. Interview recruitment and the consultation were conducted via electronic mailshots and social media run by Mesothelioma UK, the National Lung Cancer Forum for Nurses and British Thoracic Oncology Group. Interview data was collected between January and December 2017. Consultation data was collected between January and March 2018. Framework analysis methods were used3.

      4c3880bb027f159e801041b1021e88e8 Result

      The findings provide an in-depth understanding of patient, family carer and staff experiences of receiving a mesothelioma diagnosis. A number of patient centred requirements to improve this experience were identified. These requirements form the basis of the recommendations developed and refined through consultation. The recommendations highlight the importance of providing consistency and continuity in terms of who the patient sees and what is said on the diagnostic journey. The recommendations also emphasise the value in health professions having the following: specialist knowledge and skills of both mesothelioma and communication, a patient-centred approach, a quiet and private environment to facilitate communication, sufficient time to address patient and family concerns, access to good quality information resources, and effective partnerships for timely referrals to specialist services. Participants indicated that the involvement of the Clinical Nurse Specialist enhanced diagnostic experience.

      8eea62084ca7e541d918e823422bd82e Conclusion

      The study provides unique insight into the mesothelioma diagnostic experience. The recommendations will be launched by Mesothelioma UK on 1st May 2018. These recommendations will help to inform health professional’s decisions and practice regarding the communication of a mesothelioma diagnosis and improve patient experience. The goal is to make the patient feel like the most important person in the room, and at the centre of the communication process.

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      P3.07-10 - What Do People Living with Lung Cancer Want and Need from the Recovery Package (ID 11930)

      12:00 - 13:30  |  Author(s): Angela Mary Tod

      • Abstract
      • Slides

      Background

      The National Cancer Survivorship Initiative (NCSI 2013) supported by Macmillan and NHS England identified the Recovery Package as a key outcome for people living with and beyond cancer, yet little is known about whether it meets the needs of people with lung cancer. The aim of the research was to examine the experience, treatment and the recovery of people living with and surviving lung cancer.

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      a9ded1e5ce5d75814730bb4caaf49419 Method

      The research was a single site, mixed methods study, incuding a survey and interviews of patients .

      ► a survey to identify and understand what people have experienced in terms of on-going support to enhance their recovery.

      ► interviews to improve understanding of the patient and family experience

      ► to generate initial recommendations through analysis of survey and interview data.

      100 invites were sent out to those who met the eligibility criteria; 34 completed the questionairre and 17 agreed to be interviewed.

      4c3880bb027f159e801041b1021e88e8 Result

      ► Understanding of the recovery package was lacking

      ► There was a mixed response of positive and negative comments related to the various health professionals involved in The Recovery Package

      ► Health and wellbeing programmes were welcomed

      ► An individualised exercise and rehabiliation programme would be preferable

      ► 70% surveyed wanted to know more about The Recovery Package

      8eea62084ca7e541d918e823422bd82e Conclusion

      For The Recovery Package to be effective it needs to be managed and maintained by all health care professionals involved in the patient pathway. Patients and carers need to be made aware of what is available locally and nationally to enhance their recovery and quality of life. Implementing a dedicated rehabilitation programme to promote the enhanced physical recovery and to address psycho-social needs of people living with and beyond lung cancer is required.

      6f8b794f3246b0c1e1780bb4d4d5dc53

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    P3.15 - Treatment in the Real World - Support, Survivorship, Systems Research (Not CME Accredited Session) (ID 981)

    • Event: WCLC 2018
    • Type: Poster Viewing in the Exhibit Hall
    • Track:
    • Presentations: 1
    • Moderators:
    • Coordinates: 9/26/2018, 12:00 - 13:30, Exhibit Hall
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      P3.15-14 - Using Creative Co-Production to Develop a Treatment Decision Support Tool for People with Malignant Pleural Effusion (ID 11337)

      12:00 - 13:30  |  Presenting Author(s): Angela Mary Tod

      • Abstract
      • Slides

      Background

      Malignant pleural effusion (MPE) is a common, serious problem predominantly seen in metastatic lung and breast cancer and malignant pleural mesothelioma (MPM). Recurrence of MPE is common, and symptoms significantly impact on people’s daily lives.

      No ideal treatment strategy for MPE currently exists. However, there are four main treatment options aimed at relieving symptoms and improving quality of life. These include aspiration, thoracoscopy with pleurodesis, bedside pleurodesis and indwelling pleural catheter Choosing which option is best depends on many factors and making decisions can be challenging in pressured clinical environments. This project aimed to develop a support tool to help this decision making process for people with MPE.

      a9ded1e5ce5d75814730bb4caaf49419 Method

      Pleural teams from three sites in the UK undertook a creative co-production (CC-P) approach led by the translating knowledge into action (TK2A) team of the NIHR Research Collaboration and Leadership in Applied Health Research and Care Yorkshire and Humber.

      The geographical distance between the three sites and the ill-health of service users meant a novel distributed model of CC-P was used. This comprised of three locally run workshops with clinicians, patients and carers that were designed and structured by the TK2A CC-P experts. This was followed by a joint national workshop with representatives from all stakeholder groups to consider findings and outputs from local meetings.

      The design team worked with participants to develop outputs including patient timelines and personas. These were used as the basis to develop and test visible and tangible prototype ideas.

      4c3880bb027f159e801041b1021e88e8 Result

      Some key messages emerged that informed prototype development. Understanding and managing their pleural effusion was the priority for patients, not their overall cancer journey. Preferred methods for receiving information were varied but visual and graphic approaches were favoured. The main influences on people’s decisions about their MPE treatment were personal aspects of their lives (e.g. how active they are, what support they have at home).

      The design team developed a first prototype (i.e. a video representing a web-based support tool) to help people identify personal priorities and guide shared treatment decisions. This requires further development before implementation into practice.

      8eea62084ca7e541d918e823422bd82e Conclusion

      The creative design methods and distributed model of co-production used in this project overcame many of the barriers to traditional co-production methods such as power, language and time. They allowed specialist pleural teams and service users to work together to create a patient-facing decision support tool owned by those who will use it.

      6f8b794f3246b0c1e1780bb4d4d5dc53

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    WS05 - ITONF Workshop: Excellence in Thoracic Oncology Care (ID 889)

    • Event: WCLC 2018
    • Type: Workshop
    • Track: Nursing and Allied Professionals
    • Presentations: 1
    • Now Available
    • Moderators:
    • Coordinates: 9/23/2018, 12:00 - 18:00, Room 206 BD
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      WS05.12 - 2017-18 Year in Review: Scientific Poster Session (Now Available) (ID 14695)

      17:00 - 17:30  |  Presenting Author(s): Angela Mary Tod

      • Abstract
      • Presentation
      • Slides

      Abstract not provided

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