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Liz Darlison



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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  |  Author(s): Liz Darlison

      • 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.

      6f8b794f3246b0c1e1780bb4d4d5dc53

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    MTE06 - Symptom Management in Mesothelioma (Ticketed Session) (ID 816)

    • Event: WCLC 2018
    • Type: Meet the Expert Session
    • Track: Mesothelioma
    • Presentations: 1
    • Now Available
    • Moderators:
    • Coordinates: 9/24/2018, 07:00 - 08:00, Room 206 BD
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      MTE06.02 - How to Register Toxicity and Guide Patients (Now Available) (ID 11557)

      07:30 - 08:00  |  Presenting Author(s): Liz Darlison

      • Abstract
      • Presentation
      • Slides

      Abstract

      There are 125 million people exposed to asbestos in the workplace and it causes over 100,000 deaths annually (IOSH 2018). The UK has the highest incidence of Malignant Mesothelioma in the world with 2697 cases in 2015 (CRUK 2018).

      Approved treatment in the UK has not changed for over a decade with Pemetrexed and Cisplatin being the only standard treatment widely available. However the last 2 years has seen an increase in clinical trial opportunities using both targeted and immunotherapy drugs. To help promote equitable access, Mesothelioma UK publishes a regular clinical trials update listing all trials that are open to recruitment (Mesothelioma UK 2018).

      These new treatment options have brought with them new challenges in terms of patient expectation, accessing treatment and side effects.McCambridge et al (2018) describe 2017 as a year characterised by several important advances in the field although only a minority are considered practice changing. This results in patients feeling anxious about the ongoing limited treatment options and frustrated by difficulties experienced in trying to access new treatment modalities.

      This presentation will briefly review current treatment options in the UK and how patients and health care professionals are kept informed about treatment and trial opportunities. Approaches to managing treatment expectation are explored and finally how health care professionals and patients are educated about side effects from new treatment modalities in and out of clinical trials.

      References

      IOSH 2018 (Institute of Occupational Safety and Health) No Time to Lose Campaign https://www.iosh.co.uk/VP/Home/Toolkit/IOSH-No-Time-to-Lose-Campaign.aspx (Last viewed June 18th 2018)

      CRUK 2018 (Cancer Research UK) Mesothelioma Incidence Statistics https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/mesothelioma/incidence (Last viewed June 28th 2018)

      Mesothelioma UK 2018 Clinical Trials http://www.mesothelioma.uk.com/information-support/information/clinical-trials/ (Last viewed July 4th 2018)

      McCambridge AJ, Napolitano A, Mansfield AS, Fennell DA, Sekido Y, Nowak AK, Reungwetwattana T, Mao W, Pass HI, Carbone M, Yang H, Peikert T, 2018. Progress in the Management of Malignant Pleural Mesothelioma in 2017. Journal of Thoracic Oncology Vol 13 No 5 606-623.

      e353dbe42c8654f33588d4da0b517469

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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: 1
    • 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): Liz Darlison

      • 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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    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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      WS05.04 - Tag, Tweet or Follow: Top Tips for using Social Media in your Clinical Practice (Now Available) (ID 14544)

      13:30 - 13:50  |  Presenting Author(s): Liz Darlison

      • Abstract
      • Presentation
      • Slides

      Abstract not provided

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