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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
    • 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 (ID 11382)

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

      • Abstract

      Abstract not provided

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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
    • 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 (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
    • 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 (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.

      6f8b794f3246b0c1e1780bb4d4d5dc53

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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.

      recovery package.png

      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
    • 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 (ID 14695)

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

      • Abstract
      • Presentation
      • Slides

      Abstract not provided

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