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Maureen Rigney
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MA22 - Partnering with Patients to Understand Stigma, Disparities and Values Leading to Improved Lung Cancer Care (ID 154)
- Event: WCLC 2019
- Type: Mini Oral Session
- Track: Advocacy
- Presentations: 1
- Now Available
- Moderators:Diego Villalón, Christina Sit
- Coordinates: 9/09/2019, 15:45 - 17:15, Amsterdam (2011)
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MA22.10 - The Role of Stigma in Differential Care for Lung Cancer Patients: A Decade of Patient and Oncologist Attitudes (Now Available) (ID 2540)
15:45 - 17:15 | Author(s): Maureen Rigney
- Abstract
- Presentation
Background
The presence of lung cancer stigma is well documented (Chapple et al, 2004; Chambers et al, 2012; Marlow et al, 2015) and has been shown to impact the care and treatment of lung cancer survivors (Tod et al. 2008; Carter-Harris et al 2014). In 2008, a large survey of over 200 patients, 200 oncologists, and 1000 members of the general population revealed that most participants felt that lung cancer was principally caused by external factors, that it was preventable, and that lung cancer patients were at least partly to blame for their illness (Weiss et al. 2014; Weiss et al. 2017). The last decade has brought significant changes in the treatment paradigm for lung cancer but it was unknown if the perceptions that affect the care of lung cancer patients have changed.
Method
1001 members of the general public, 208 patients with lung cancer, and 205 oncologists who treat lung cancer were surveyed with the identical survey instrument from 2008 survey along with 5-15 additional questions at the end. The survey was carried out by phone and online between June 6 and July 26, 2018. Statistical analysis was performed comparing 2008 and 2018 datasets using paired t-tests if normally distributed or Mann-Whitney U tests for continuous data and Chi-squared or Fisher’s exact test for categorical data.
Result
In 2018, significantly more oncologists feel they have adequate treatment options for metastatic lung cancer (67% vs 36%, p<.001) and the majority of patients report being satisfied with their medical care (87%) and treatment options (71%).
Nevertheless, significantly more patients felt that there was a stigma associated with having lung cancer (70% vs. 54%, p<.0001) and that society treats them differently (63% vs 45%, p<.0001). There was a non-significant increase in oncologists indicating that there is a stigma associated with lung cancer (68% in 2018 vs 60% in 2008) and that patients blame themselves (67% vs 57%).
Despite the improvements in lung cancer treatment over the past decade, stigma is still evident in care for those with lung cancer. Similar to 2008, 57% of oncologists indicated that patients with different types of cancer were thought about, approached, or handled differently and lung cancer patients were most frequently cited. In 2018, more patients reported that patients with lung cancer are treated differently by doctors and nurses (40% vs. 26%, p=.01). For both groups, the most common differential treatment referenced was “received less sympathy from medical staff.”
Conclusion
After a decade of research progress in lung cancer, stigma surrounding the disease remains a critical problem even in a healthcare setting. Patients are perceiving stigma at higher levels and oncologists are not reporting any improvement. This work underscores the need to address stigma with proactive multilevel approaches including the need for medical providers to practice empathic communication.
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P1.07 - Nursing and Allied Professionals (ID 171)
- Event: WCLC 2019
- Type: Poster Viewing in the Exhibit Hall
- Track: Nursing and Allied Professionals
- Presentations: 1
- Moderators:
- Coordinates: 9/08/2019, 09:45 - 18:00, Exhibit Hall
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P1.07-01 - Lung Cancer Support Groups: Still Relevant in a Digital World? (ID 1796)
09:45 - 18:00 | Presenting Author(s): Maureen Rigney
- Abstract
Background
People diagnosed with lung cancer experience high levels of distress and have greater unmet emotional needs than those with other types of cancer.
Historically, an important way to meet unmet social support needs has been through in-person groups, the benefits of which extend beyond psychosocial support and may include increased feelings of control and confidence and decreased depression and distress.
Thirty years after the value of in-person support groups was first study documented, in a world where we can instantaneously connect with others from all over the world through a tap or swipe, are support groups still relevant? This study sought to examine overall satisfaction with and impact of in-person lung cancer support group participation on distress, loneliness, self-efficacy and overall quality of life.
Method
Lung cancer patients, survivors and loved ones enrolled in seven in-person lung cancer-specific support groups and completed baseline questionnaires at their first group with follow-up surveys administered after six months. Validated measures assessed cancer-related distress (15-item CSS, CancerSupportSource®); loneliness (UCLA Three-Item Loneliness Scale); and group satisfaction (Helpful Group Experiences Questionnaire). Three self-efficacy questions were also included and developed specifically for this study. Qualitative data was gathered through focus groups.
Statistical comparisons of baseline vs. six-month levels of cancer-related distress, loneliness and positive affect were conducted using paired-samples t-tests.
Result
Eighty-six participants completed baseline questionnaires with 29 completing/partially completing follow-up surveys.
Univariate Analyses demonstrated statistically significant decreases in total cancer-related distress but not loneliness or positive affect.
Responses to self-efficacy questions showed high confidence in making treatment decisions (86%). Confidence was also high in communicating with healthcare teams and the ability to access information and resources (both 90%).
Group satisfaction was high with 100% (n=27) indicating they would recommend their group to others. The highest rated group experiences included sense of belonging and receiving support and encouragement. The lowest rated experiences included feeling they had helped others and having talked about recurrence fears.
Conclusion
These results indicate in-person support groups serve an important role in relieving distress and providing connection for people with lung cancer and their loved ones.
Convenient digital support platforms like online communities and apps may help to meet the emotional needs of people some people with lung cancer and their loved ones but perhaps are not a replacement for the in-person experience of community.
