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M. Rigney
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OA21 - Palliative and Supportive Care for Lung Cancer Patients (ID 405)
- Event: WCLC 2016
- Type: Oral Session
- Track: Palliative Care/Ethics
- Presentations: 1
- Moderators:C.A. Silva, H. Watzke
- Coordinates: 12/07/2016, 11:00 - 12:30, Schubert 5
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OA21.03 - Unmet Needs in Physical and Emotional Side Effects during Lung Cancer Treatment and Survivorship (ID 4380)
11:20 - 11:30 | Author(s): M. Rigney
- Abstract
- Presentation
Background:
Previous research has shown that supportive care needs in lung cancer patients are high and that this population may have significantly more unmet care needs than other cancer patients. Our goals for this study were to determine the most prevalent and problematic side-effects of lung cancer and lung cancer treatment in our community and to understand where both patients and caregivers felt there were unmet needs.
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 identified as the primary caregiver. The overall completion rate was 72.6%, similar for both groups. Respondents identified all side effects they or their loved one experienced during and after treatment, as well as 5+ years after diagnosis. They also indicated which of these side-effects were most problematic during those time periods. Respondents were also for demographic information and for open-ended responses about their unmet needs during care and follow-up.
Results:
Respondents indicated a high rate of side effects, with over 95% reporting at least one. Importantly, both patients and caregivers reported that physical side effects were significantly more problematic during treatment but that emotional side effects were more problematic after treatment and in the long-term. Patients rated anxiety, fatigue, and shortness of breath as the most problematic short and long-term post-treatment side effects, with 18-29% of patients indicating these items at a particular time period. During treatment, gastrointestinal issues including constipation (18%), diarrhea (17%), and nausea (14%) were also identified as highly problematic side effects by the patients. Caregivers reported similar effects but also rated pain as problematic across all time periods (15-24%) and identified loss of appetite (28%) and weight loss (25%) during treatment. When questioned about unmet needs during treatment and survivorship, respondents frequently commented that their treatment team focused on treatment and survival and not on managing side effects.
Conclusion:
Side effect management is a clear unmet need for lung cancer patients and to help support their caregivers. Our data show high levels of emotional and physical side effects and a perceived lack of support for proper management. Notably, emotional side effects are prevalent after treatment for lung cancer into long-term survivorship and are frequently cited as the most problematic issue for those no longer in active treatment.
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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: 3
- Moderators:
- Coordinates: 12/06/2016, 14:30 - 15:45, Hall B (Poster Area)
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P2.08-003 - Quality of Life and Patient Reported Outcome Measures for Lung Cancer Patients; Treatment Outcomes, and Patient Management (ID 3896)
14:30 - 14:30 | Author(s): M. Rigney
- Abstract
Background:
Patients with lung cancer rank maintaining their independence and being able to care for themselves as being of greater importance than the symptoms of their disease. Quality of life (QOL) and patient reported outcomes (PRO) provide measures of patients’ physical, functional, and psychosocial wellbeing.
Methods:
In October 2015, advocacy organization executives met to review and evaluate the importance of QOL and PROs within the context of clinical trials and their usefulness during the care of patients with lung cancer by community oncologists. The discussion included the impact of QOL, cancer-related weight changes, diet, and exercise on patients’ overall health and advocating the importance of QOL and PRO assessments in patients with lung cancer through social media.
Results:
QOL and PRO measures are associated with treatment outcomes and may be useful in patient management to evaluate individual treatments and survival. Malnourishment, common in patients with lung cancer, reduces survival. Reduced appetite contributes to cancer cachexia and sarcopenia. Sarcopenia can lead to frailty, decreasing patients’ independence and tolerance and responsiveness to treatment. Early intervention to improve diet and prevent weight loss of greater than >10% greatly improves patients’ functional status and facilitates cancer treatment. Where possible, activity should be encouraged. Exercise throughout cancer treatment is safe for cancer patients and improves physical function and QOL. Information about the importance of enhanced diet and exercise and the usefulness of QOL and PROs in the management of patients with lung cancer could be shared via social media.
Conclusion:
Patients with lung cancer value QOL more than symptom management. Clinical trial data suggest that higher baseline QOL and PROs correlate with better disease outcome; these tools may be useful in the overall management of patients (Hollen 2014). Treatments should be evaluated based on their impact on QOL and PROs as well as survival. Weight maintenance and exercise are essential for patients overall health and QOL, and should be included in patients’ treatment planning. Social media may be effective in raising awareness among patients with lung cancer and their caregivers about the importance of enhanced diet and exercise. Further discussion and research about the usefulness of QOL and PRO measures in the management of patients with lung cancer is warranted. Reference: Hollen PJ, Gralla RJ, Kris MG, et al. Measurement of quality of life in patients with lung cancer in multicenter trials of new therapies. Psychometric assessment of the Lung Cancer Symptom Scale. Cancer. 1994;73(8)2087-98.
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P2.08-011 - Fashion Forward: Stigma Busting in Style in Egypt (ID 3710)
14:30 - 14:30 | Author(s): M. Rigney
- Abstract
Background:
In Egypt, cancer remains a taboo subject. Misconceptions that cancer is unpreventable and always fatal persist. Often seen as punishment, it is common for those diagnosed to be ostracized and abandoned. Awareness-raising and survivor stories are crucial in eradicating cancer stigma. The finale of the Cancer from Patients’ Perspective (CPP) Summit used a revolutionary approach to confronting stigma: a fashion show with survivors modeling powerful creations by famous Egyptian designers to communicate their individual cancer journeys.
Methods:
In October 2015, an online campaign was launched via Facebook to engage survivors and fashion designers. All interested survivors were accepted, those not online were registered for the project by the organizers. Survivor profiles were added to a separate, password protected Facebook group open only to the fashion designers, who then selected a survivor to dress by commenting on her story. After being matched, survivors and designers met an average of four times over two months to discuss and interpret the journey, collaborate on sketches, agree upon designs and for fittings. At the event, each design was rated from 1-10 by a panel of local, regional and international judges with the winner being the creation with the most points.
Results:
A cancer survivor moderated the fashion show, which over 350 attended. Lung cancer survivors joined those diagnosed with five other cancers, 35 in all participated. One by one, each survivor, wearing her creation, took the stage with her designer and together they told their story. The survivor then took her dramatic turn on the “catwalk.” Designs ranged from elegant evening dresses to edgy, theatrical concepts that displayed resiliency and triumph. At the end, results were tallied and the winner took her final turn on the runway.
Conclusion:
Experts say cancer stigma in the Middle East can be eradicated through education, positive survivor stories and media coverage. The CCP Summit hit all these elements and gave survivors voice in a unique and powerful manner. While there were challenges, including survivors not being allowed to participate over objections of male relatives and designers being cautioned against participating by their studios, the catwalk proves a movement to confront cancer stigma in the Middle East is underway. Through their participation, these survivor “warriors” raised awareness, gave hope to others and, by telling their stories, challenged misconceptions with grace, strength and beauty.
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P2.08-012 - Evaluation of Lung Cancer Support Group Participation: Preliminary Results (ID 3693)
14:30 - 14:30 | Author(s): M. Rigney
- Abstract
Background:
In-person support group attendance can address the greater unmet physical and emotional needs and high rates of distress experienced by those diagnosed with lung cancer. However, survivors tend to prefer lung cancer-specific groups, which can be challenging to start and maintain. As a result, there are <100 groups currently active in the US, inadequate to serve the 224,000 people diagnosed annually. The National Lung Cancer Support Group Network was established in 2015 to strengthen existing groups and form seven new groups in areas of high need. This study evaluates the psychosocial impact and benefits of group participation of the new lung cancer support groups.
Methods:
Using a pre/post-test design, consenting participants completed a baseline questionnaire including the CSS-15 Distress screening tool, Positive Affect Scale and Loneliness Scale prior to joining the group. After six months of attendance, follow-up was completed. The follow-up questionnaire included the CSS-15 Distress screening tool, Positive Affect and Loneliness scales and additional self-efficacy measures and 14 questions about group helpfulness. These are preliminary results from the first group at Gilda’s Club Nashville.
Results:
Demographics: At baseline, the participants (N=20) were mostly patients or survivors (68%), white (80%), female (64%) with an average age of 54.8. More than half reported being diagnosed at Stage IV. All were at risk for depression upon enrollment. Ten participants remained and completed the 6 month follow-up survey. Psychosocial outcomes: There was a significant decrease in overall distress (p=0.0067) following group participation but no change in positive affect or loneliness. Fewer participants reported life disruptions and feeling nervous or afraid at post-test. Eight of the follow-up participants (80%) remained at risk for depression. Group helpfulness: Eighty percent strongly agreed that after attending the group, they were better able to ask questions of their healthcare team, make treatment decisions and access information and resources. Participants felt more interested and determined after attending the group. Feelings of being isolated remained unchanged. All participants indicated that they would recommend this group to others and agreed that participation resulted in having a sense of belonging, acceptance and development of new friendships.
Conclusion:
Preliminary results show potential psychosocial improvements related to decreased distress, increased self-efficacy and positive benefits from group participation. Further data from this and the additional six groups will add statistical power to the findings. Study findings may provide evidence that participating in lung-cancer specific groups can be helpful in improving psychosocial outcomes.
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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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P3.05-013 - Development of the Kentucky LEADS Collaborative Lung Cancer Survivorship Care Program (ID 4979)
14:30 - 14:30 | Author(s): M. Rigney
- Abstract
Background:
Individuals diagnosed with lung cancer commonly suffer many threats to preserving quality of life, including substantial symptom burden, clinically significant distress, limited social and economic resources, and considerable stigma/bias. Despite these notable challenges, relatively little clinical research is dedicated to developing, evaluating, and disseminating survivorship interventions that address the unique experience of lung cancer survivors and their caregivers.
Methods:
To expand and enhance lung cancer survivorship care, the investigative team developed a targeted and tailored psychosocial intervention to address the diverse needs of lung cancer survivors and the challenges faced by their caregivers. Principles of motivational interviewing and shared decision making guided the design of the Kentucky LEADS Collaborative Lung Cancer Survivorship Care program, a flexible and scalable survivorship intervention.
Results:
Selection of intervention content was guided by a review of the literature, input from experienced lung cancer survivorship care clinicians, and feedback from an engaged community advisory board. During the development phase, the investigative team confronted the challenge of designing a psychosocial intervention that could be feasibly delivered in diverse cancer care settings and would be acceptable to an underserved and stigmatized population. To promote implementation feasibility, the investigative team “designed for dissemination,” creating an intervention that was discipline, delivery, and setting neutral. To enhance program acceptability, intervention design focused on common unmet needs and involves a content menu that allows lung cancer survivors to select modules aligned with their personal concerns and preferences. After conducting online and in-person interventionist training, program feasibility, acceptability, and preliminary efficacy are being evaluated in a single-arm trial in 10 Kentucky (USA) cancer care facilities. Approximately 300 lung cancer survivors and caregivers are completing three waves of validated patient-reported outcome measures and program acceptability assessments. Measures are being administered at baseline (PRE), immediately after the intervention (POST), and six months after baseline (FOL).
Conclusion:
Individuals diagnosed with lung cancer and their caregivers remain an underserved and stigmatized group. With the emergence of lung cancer screening and innovations in lung cancer care that are leading to improved lung cancer outcomes, there is need to invest in lung cancer survivorship research, including the development of survivorship interventions. Based on initial study results, the investigative team plans to modify the survivorship care intervention and training program and then conduct a group randomized trial of the Kentucky Lung Cancer Survivorship Care Program, which will be tested against an enhanced usual care condition in collaboration with the Kentucky Clinical Trials Network.
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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): M. Rigney
- 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.
