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P. Wheatley-Price
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OA16 - Improving the Quality of Lung Cancer Care - Patients Perspective (ID 399)
- Event: WCLC 2016
- Type: Oral Session
- Track: Patient Support and Advocacy Groups
- Presentations: 1
- Moderators:G. Kreye, D. Tan
- Coordinates: 12/06/2016, 16:00 - 17:30, Schubert 6
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OA16.01 - The Role of Patient Groups in Integrating the Patient Voice into Drug Funding Decisions (ID 4291)
16:00 - 16:10 | Author(s): P. Wheatley-Price
- Abstract
- Presentation
Background:
The recent emergence of multiple new targeted therapies and immunotherapy drugs has significantly increased options in the systemic treatment of lung cancer (LC). While great news for patients, in the current environment of scarce health care resources, government agencies deliberating on public funding of cancer drugs struggle with ensuring sustainability of the public health system due to increasingly expensive drug costs. In Canada, the Pan-Canadian Oncology Drug Review (pCODR), a program of the Canadian Agency for Drugs and Technologies in Health (CADTH), provides recommendations that informs public funding decisions for cancer drugs. pCODR’s recommendations apply an evidence-based deliberative framework which considers the drugs clinical benefit, patient-based values, cost-effectiveness and adoption feasibility. As part of the pCODR review, patient input is integrated into the clinical and economic reports and recommendations. Patient groups, such as Lung Cancer Canada (LCC), can play a pivotal role by synthesizing the evidence gathered from patients and caregivers to inform the pCODR process.
Methods:
Both quantitative and qualitative techniques were used to gather data for LCC’s pCODR submissions. A national survey – the Faces of Lung Cancer (FOLC) - illustrated the perceptions and general unmet needs of those living with LC. Focus groups, one-on-one interviews and audits of patient discussion boards gathered the insights of patients and caregivers with experience on the drug under consideration. Patients were identified through LCC’s Medical Advisory Committee and their networks, clinical trial investigators, outreach to other patient groups and scans of LC patient/caregiver discussion boards.
Results:
Since 2014, LCC has made five pCODR submissions. 91 patients and 72 caregivers participated in the FOLC survey. The insights of an additional 62 patients and 38 caregivers with experience on the drugs under consideration were gathered qualitatively. LCC’s submissions describe the emotional, practical and logistical challenges of living with LC, and illustrate the “life impact” of the drug under consideration. - factors not traditionally included in clinical trial design.
Conclusion:
pCODR’s deliberative process, partnered with LCC’s methodology, may be an effective model to aid public funding discussions of new cancer drugs. pCODR and the reviewers have found patient group submissions valuable in providing lived-experience insight, at times changing perspectives. LCC’s contribution has been strongly reflected in the funding guidance reports. To supplement its process, pCODR recently launched a pilot project to include clinician input in the review process. The impact of the pilot will be assessed as data becomes available.
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P2.08 - Poster Session with Presenters Present (ID 491)
- Event: WCLC 2016
- Type: Poster Presenters Present
- Track: Patient Support and Advocacy Groups
- Presentations: 1
- Moderators:
- Coordinates: 12/06/2016, 14:30 - 15:45, Hall B (Poster Area)
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P2.08-001 - Giving a Voice to Patients and Caregivers through the Lung Cancer Canada ‘Faces of Lung Cancer’ Survey (ID 4340)
14:30 - 14:30 | Author(s): P. Wheatley-Price
- Abstract
Background:
Lung cancer (LC) is a major cause of cancer death, morbidity and loss of function. Caregivers of LC patients provide emotional, physical, and financial support, but their contribution is under-reported. The Lung Cancer Canada (LCC) Faces of Lung Cancer Survey aimed to study the impact of LC diagnosis and treatment on patients and caregivers.
Methods:
This 15-minute online survey for patients and caregivers was conducted in August 2015. Participants were recruited from a database of patients and caregivers, who previously consented to survey participation; targeted emails, social media postings and other patient groups were also utilized. The questionnaire covered demographics, emotional issues and stigma, symptom burden, quality of life, treatment experiences, and unmet needs. Anonymously collected results were collated by LCC.
Results:
Overall, 91 patients and 72 caregivers completed 163 interviews. Of surveyed patients, 57% had no active cancer. Fatigue, depression, and respiratory complaints were the most challenging symptoms for patients. Fear/uncertainty was reported as the hardest thing about LC by 40% of patients and 17% of caregivers. Most caregivers were partners (54%) or parents (38%). 60% were the primary caregiver, and 79% were former caregivers: 68% of their care receivers had died. Most caregivers coped well (79%), but stressors included care-receiver’s declining health, their own emotions, and balancing responsibilities. Caregivers reported more negative feelings than patients: anxious/stressed 61%v42%, depressed/hopeless 32%v11%, cared for 13%v38%, confident/encouraged 11%v25%. Caregivers felt less support than patients from their healthcare team (75%v92%) and family/friends (65%v87%). Treatment satisfaction was lower among caregivers: only 58% felt very/somewhat satisfied (v 82% patients). 60% of patients and 68% of caregivers reported a negative stigma attached to LC. 35% of respondents felt there was less empathy toward LC than other cancers, and 38% of caregivers felt they had to advocate harder for LC than other cancers. Notably, some caregivers (8%) and patients (5%) reported a lack of compassion from medical professionals after a LC diagnosis. 37% of patients and 50% of caregivers reported a negative household financial impact from LC diagnosis.
Conclusion:
This report on the experiences of lung cancer patients and their caregivers highlights their reactions to the illness, and the associated prejudice and stigma. Lung Cancer Canada is working to improve patient access to supportive services, to decrease caregiver burden through support initiatives such as peer-to-peer support programs, to educate patients and caregivers on LC and their treatment options, and to advocate for LC patients in the face of established stigma.
