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Vanessa Beattie
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ES19 - Patient-Reported Outcomes, Patient Registries and Real-World Evidence: Learning Directly from Patients (ID 224)
- Event: WCLC 2020
- Type: Educational Session
- Track: Patient Advocacy
- Presentations: 1
- Moderators:
- Coordinates: 1/30/2021, 16:45 - 17:45, Scientific Program Auditorium
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ES19.02 - Chair (ID 4057)
16:45 - 17:45 | Presenting Author(s): Vanessa Beattie
- Abstract
- Presentation
Abstract not provided
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MA07 - Improving Care for People with Lung Cancer: Decision Making, Survivorship, and New Challenges During COVID-19 (ID 167)
- Event: WCLC 2020
- Type: Mini Oral
- Track: Patient Advocacy
- Presentations: 1
- Moderators:
- Coordinates: 1/30/2021, 15:30 - 16:30, Scientific Program Auditorium
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MA07.02 - Are People with Lung Cancer Satisfied with the Care they Receive? (ID 2979)
15:30 - 16:30 | Author(s): Vanessa Beattie
- Abstract
- Presentation
Introduction
Feedback from healthcare service users is fundamental to informing healthcare quality. The United Kingdom Department of Health commissions an annual survey of people aged 16 years and older with a primary cancer diagnosis. We examined how experiences of lung cancer care varied according to demographic and clinical features.
Methods
We analysed responses from over 15,000 people with a lung cancer diagnosis in the English Cancer Patient Experience Survey 2010 to 2015, linked to the National Cancer Registry. Item response theory was used to assess underlying traits of satisfaction of NHS care overall and within distinct clinical areas. We modelled multiple questions by grouping within a single trait. Adjusted regression models were used to assess which features were associated with negative and positive tertiles of satisfaction, compared to neutral experiences (central tertile).
Results
People with later stage disease and those from more deprived areas were more likely to report positive experiences of healthcare overall (Stage IV Relative Risk Ratio 1.22 95%Confidence Interval 1.05-1.42; most deprived socioeconomic quintile RRR 1.23 95%CI 1.08-1.39), relative to neutral experiences. Older individuals were less likely to report negative experiences compared to younger (>80 RRR 0.69 95%CI 0.59-0.81); females were more likely to report negative experiences (RRR 1.22 95%CI 1.12-1.31). Under-represented populations were more likely to report negative experiences. Discrepancies in findings arose between single summary question responses and multi-question traits.
Conclusion
Reports of positive pathway experiences are associated with advanced lung cancer staging and greater socioeconomic deprivation. These features are also considered risk factors for late diagnosis and poor clinical outcomes. Our use of item response theory shows that reported experiences from questionnaires can offer further insight when modelled together.
So, what:
We highlight differences in patient experience across patient features that can inform policies to improve provision of optimal care and communication for all healthcare service users. Methods to model complex patient experiences should be utilised more frequently for people with cancer, distilling further value from these important personal contributions.
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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P28 - Nursing and Allied Health Professionals - Regional Roles of Nurses and Allied Health Professionals (ID 159)
- Event: WCLC 2020
- Type: Posters
- Track: Nursing and Allied Health Professionals
- Presentations: 1
- Moderators:
- Coordinates: 1/28/2021, 00:00 - 00:00, ePoster Hall
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P28.03 - An Autoethnographic Study Exploring the Role of the Lung Cancer Nurse Specialist in the National Optimal Lung Cancer Pathway (ID 954)
00:00 - 00:00 | Author(s): Vanessa Beattie
- Abstract
Introduction
Background: The National Optimal Lung Cancer Pathway (NOLCP) is a pathway hospitals in the UK are expected to follow which advocates a standardised care pathway. The pathway is aimed at improving lung cancer care to enable time to treatment within 49 days.
The Lung Cancer Nurse Specialist is a core member of the Multidisciplinary Team providing expert knowledge, specialist assessment and advanced communication. They also act as an advocate for patients on the NOLCP. The aim of study was to explore the role of Lung Cancer Nurse Specialist in the NOLCP and the Lung Cancer Specialist Nurse's experience of the “meet the Lung CNS “ aspect of the NOLCP.
Methods
An autoethnographic study of 16 practicing Lung Cancer Nurse Specialist’s from different centres across the country who reflected on the first meeting with two patients on the NOLCP. Written reflections were subjected to thematic analysis and Gibbs reflective model was used to complete the reflections.
Results
Four key themes were identified:
1. Co-ordination of complex care. This is delivering care in accordance with the NOLCP, avoiding delays and ensuring right care, right time in the right place.
2. Relationship building and advanced communication. Utilising specialised knowledge along woth advanced listening and communication skills. Being accessible and providing accurate information and advice
3. Specialist patient assessment and management. This involves the undertaking of specialist holistic assessments to support the treatment and management of lung cancer and its symptoms.
4. Support and management of emotions and expectations. Providing emotional support and management of unrealistic expectations for patients and relatives, as well as themselves and the wider healthcare community
These four themes were underpinned by a fifth cross-cutting theme which was effective utilisation of resources.
Conclusion
Lung Cancer Nurse Specilaists are pivotal in the delivery of high quality lung cancer care. Through the provision of specialist and expert nursing care, Lung Cancer Nurse Specialists co-ordinate complex care, undertake holistic patient assessment and support and management expectations. This is achieved through successful relationship building and advanced communication skills and appropriate and effective utilisation of resources.
Recommendations
Clarification of the Lung Cancer Nurse Specialist role is required both locally & nationally. Implementation of the NOLCP will add increased demand on Lung Cancer Nurse Specialist services which are already under-resourced.
Adequate provision must be made to meet this requirement.
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P39 - Patient Advocacy (ID 168)
- Event: WCLC 2020
- Type: Posters
- Track: Patient Advocacy
- Presentations: 2
- Moderators:
- Coordinates: 1/28/2021, 00:00 - 00:00, ePoster Hall
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P39.01 - Satisfaction with the Lung Cancer Care Pathway. Is it time to Revise the way we Monitor and Assess Patient Experience? (ID 2980)
00:00 - 00:00 | Author(s): Vanessa Beattie
- Abstract
Introduction
The National Cancer Patient Experience Survey is a uniquely valuable tool to monitor satisfaction with care. Consisting of over 80 multiple choice questions, it can be considered overwhelming, particularly for individuals with a poor prognosis such as lung cancer. We evaluated how this information is currently used, and whether alternative methods may offer further value or efficiencies.
Methods
We analysed responses from over 15,000 people with a lung cancer diagnosis in the English Cancer Patient Experience Survey 2010 to 2015, linked to the National Cancer Registry. Item response theory was used to assess a question’s ability to discriminate positive and negative experiences, and model multiple questions as a single trait. Adjusted regression models were used to determine associations of experience with demographics, and survival analysis was performed based on experience. Results were compared to those from a single summary question of overall satisfaction.
Results
Current survey guidance dichotomises complex responses and excludes uncertain views. Model assumptions could be met in a total of 19 questions with sufficient discrimination ability, providing an overall care domain inclusive of diagnosis, information and support. Model assumptions could not be met in treatment domains. People reporting positive experiences in the overall domain had more advanced staging and shorter median survival compared to negative experiences (-58 days). In contrast, positive responses to the single summary question had a longer median survival (+122 days), and associations were frequently non-significant.
Conclusion
Differing insights from multi-question domains indicate that current methods of evaluating patient experience result in a loss of detail in valuable personal views. Analysing the high number of questions individually can lead to false positive findings, a single summary question cannot provide sufficient insight for interventions. Inconsistencies in treatment questions make longitudinal analyses problematic. We recommend multi-question methods to refine the number, consistency and value of questions in patient experience surveys.
So, what:
The time and personal views contributed by people with a diagnosis of cancer are an invaluable resource in patient centred medicine. Approaches to record and analyse these insights can be revised and refined to reduce pressures on individuals and gain reliable evidence for intervention.
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P39.07 - Evaluating the Success of the First Global Lung Cancer Coalition Patient Experience Survey (ID 3298)
00:00 - 00:00 | Presenting Author(s): Vanessa Beattie
- Abstract
Introduction
The Global Lung Cancer Coalition (GLCC) is a partnership of 40 patient organisations across 29 nations, dedicated to improving outcomes for lung cancer patients.
The GLCC wanted to understand the experiences of lung cancer patients in different countries, identifying common themes and differences. However, little comparative data on patient experience exists. The GLCC therefore set out to run a global online survey of patients using its members’ networks. This was the first time the GLCC had attempted such a survey.
Methods
The GLCC convened a steering group with representatives from the UK, Ireland, Netherlands and USA, including patients, clinicians and advocates. The group devised 10 questions which were translated into multiple languages, checking terminology was applicable. In addition to demographic questions, the survey asked what treatment types people had received, and considered how people felt about their care, as well as how they describe themselves.
The survey was distributed by GLCC members via supporter emails, newsletters and social media. One organisation distributed hard copies in hospitals. The survey was open throughout January 2020. The results were collated and analysed by the steering group.
The GLCC produced a global report with findings for all participating countries. Each member received a bespoke briefing with information on how patients in their country answered the survey compared to global respondents, for use in national campaigning.
Results
The survey was distributed in 17 of the 40 countries where the GLCC has members. 907 patients responded. There was variation in the number of responses, ranging from 157 in the UK (most responses) to one in Turkey (least responses). More women than men responded (74% were women). Most patients (66%) had been diagnosed in the past three years.
The number of responses indicates the willingness of patients to contribute their time and insights to a global endeavour. The responses showed considerable variation in patients’ experience of their care, including their level of involvement in decision-making and whether they felt treated with dignity and respect by their care team. These initial findings merit further exploration at a national level, to test whether they are representative of the wider lung cancer patient population’s experience (particularly for countries with fewer responses).
For future research, the GLCC would consider:
How to increase the number of countries participating and overall volume of responses
How to achieve a balance of women and men (for example, using other distribution channels)
How to reach more patients who have survived for longer
Other topics such as where patients look for information and who they trust to provide it
Supplementing the survey with qualitative interviews
Conclusion
The first GLCC survey is proof of principle: it is feasible to undertake a multi-nation patient experience survey and patients are willing to participate. We are grateful to all patients who responded. The GLCC’s members are using the global and national findings to support their advocacy work and would consider a similar initiative in the future.
