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T. Perloff
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P3.05 - Poster Session with Presenters Present (ID 475)
- Event: WCLC 2016
- Type: Poster Presenters Present
- Track: Palliative Care/Ethics
- Presentations: 1
- Moderators:
- Coordinates: 12/07/2016, 14:30 - 15:45, Hall B (Poster Area)
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P3.05-017 - Survivor Guilt: The Secret Burden of Lung Cancer Survivorship (ID 5171)
14:30 - 14:30 | Author(s): T. Perloff
- Abstract
Background:
The 5-year observed survival rate for a stage IV non-small cell lung cancer patient is less than five percent. Such a small survival rate begs the questions of how these survivors might feel. Many survivors feel a deep-seated sense of guilt; a phenomenon known as survivor guilt. The goal of the present study was to identify the prevalence of survivor guilt among lung cancer patients, while also pinpointing themes among those who are affected.
Methods:
A questionnaire containing a subset of the published IGQ-67 Interpersonal Guilt Questionnaire was completed via Survey Monkey by 108 respondents. Respondents were also given a definition of survivor guilt with an open-ended question on their feelings toward surviving lung cancer when others did not. Qualitative analysis was conducted on open-ended text responses for respondents with the most measured survivor guilt. After key qualitative themes were established from the initial survey, focus groups were held in survivors who experienced high and low levels of survivor guilt to further explore the themes.
Results:
This study indicates that a significant amount of survivor guilt is experienced among lung cancer survivors. 55% of respondents identified as having experienced survivor guilt, yet 63.9% of respondents scored above average on the IGQ-67 Survivor Guilt Scale. Qualitative analysis established five recurring themes among 25% of respondents with the highest measured survivor guilt. Targeted focus groups revealed further commonalities among those with high and low levels of measured survivor guilt.
Conclusion:
This study identifies the prevalence of survivor guilt in lung cancer survivors and shows survivor guilt as a major psychosocial challenge. Further research across all cancer types must be explored in order to develop effective coping mechanisms for sufferers. This study develops the basis for future research directions in creating tools to identify, assess and treat survivor guilt in survivors of all cancers.
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P3.07 - Poster Session with Presenters Present (ID 493)
- Event: WCLC 2016
- Type: Poster Presenters Present
- Track: Regional Aspects/Health Policy/Public Health
- Presentations: 1
- Moderators:
- Coordinates: 12/07/2016, 14:30 - 15:45, Hall B (Poster Area)
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P3.07-014 - Patient and Caregiver Experiences: Identifying Gaps in Access to High Quality Care for Lung Cancer Patients (ID 4381)
14:30 - 14:30 | Author(s): T. Perloff
- Abstract
Background:
A growing number of clinical guidelines recommend expansion of multidisciplinary care to include supportive/palliative care and survivorship care for oncology patients. Health care delivery systems vary and lung cancer patients may not have the education/awareness or ability to access these recommended services. Our goal was to assess treatment and care planning from the patient and caregiver perspective and to determine whether lung cancer patients are receiving the recommended high-quality care.
Methods:
A Community Needs Assessment survey was distributed to lung cancer patients and caregivers electronically between 11/9/2015 and 2/8/2016. 820 people responded, including 471 patients/survivors and 349 caregivers, 181 of whom were the primary caregiver. The overall completion rate was 72.6%. The survey queried the composition of the patient’s care team, incorporation of values-based discussions in care planning, discussions and plans for palliative care and, where applicable, survivorship care. Demographic information was asked to identify whether patterns of care varied with geographical or socio-economic factors.
Results:
Patient and caregiver reported experiences revealed multiple gaps in the delivery of high-quality patient care. Less than half of patients reported having a conversation about their values and care goals with their treatment team before determining their treatment plan. Less than 30% of patients reported having a psychiatrist/psychologist, social worker, palliative care professional, or nurse navigator as part of their care team in any time period – treatment or survivorship. For palliative care, only 26.9% of active patients had discussed it and 20.13% reported receiving it, despite lung cancer data showing its potential survival benefit. Caregivers reported a higher percentage – roughly 50% reported both palliative care discussions and care receipt. However, for caregiver-reported data, the patients receiving care generally had more advanced cancer and had often not survived. Survivorship care planning was also seen at significantly lower levels than current recommendations. Of those who had completed treatment and survived more than 5 years past diagnosis, only 22% of patients and 15% of caregivers reported having a survivorship care plan.
Conclusion:
Despite recommendations and guidelines for incorporation of palliative care, survivorship care plans, values-based care planning and appropriate psycho-social support into lung cancer treatment, the majority of lung cancer patients and caregivers surveyed reported not receiving these services. Respondents were technology-enabled and generally health-literate indicating that these problems could be more widespread in rural, lower-socioeconomic areas where lung cancer is common. Addressing these problems in health care delivery could positively impact lung cancer patients and their families.
