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W. Boerckel
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ORAL 12 - Quality of Life and Trials (ID 96)
- Event: WCLC 2015
- Type: Oral Session
- Track: Advocacy
- Presentations: 1
- Moderators:E. Bachrach Makovsky, C. Malnati
- Coordinates: 9/07/2015, 10:45 - 12:15, 708+710+712
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ORAL12.01 - Priority of Daily Life v's Medical Care Challenges for Lung Cancer Patients and Carers (ID 2632)
10:45 - 10:56 | Author(s): W. Boerckel
- Abstract
- Presentation
Background:
People living with lung cancer (LC), LC survivors and carers are impacted by LC in different ways. The Global Lung Cancer Coalition (GLCC) recognises lung cancer patients’ and carers’ isolation and the challenges they face (GLCC, 2015). However for those affected by LC, limited data exists on the priority of their challenges, their ability to cope with these challenges and if enough relevant information and support is available. Identifiable variances between patient and carer experience and how challenges differ based on gender, age and nationality are also unknown. In 2013, The GLCC and Boehringer Ingelheim collaborated to create a global survey to identify these priorities and variances.
Methods:
A unique web-based survey was designed to isolate the single greatest challenge faced by individuals affected by LC. 200 specific and globally relevant challenges were identified by LC experts from the GLCC, grouped into categories and illustrated, with a small text descriptor. At survey entry, respondents identified their greatest challenge relevant to either daily life or medical care. Via an associated illustration, respondents chose subsequent sub-categories of challenges until one specific challenge was identified as the most significant. Respondents answered 3 questions in relation to that challenge regarding 1) availability of information 2) ability to cope 3) level of support required. Screening was conducted for age, gender, treatment and nationality. Respondents were asked to identify if they were living with LC, a LC survivor or a carer. The survey was available in 11 languages and promoted through the GLCC, LC clinicians, charities and associated support groups.
Results:
2871 individuals visited the survey site. 725 (25%) completed the survey. 64% of LC patients chose a daily life challenge as their most significant, compared to a medical care challenge (36%); 55% of carers also chose a daily life challenge, compared to a medical care challenge (45%). Of all participants who chose daily life, 19.8% identified emotional and/or social needs as the most significant sub-topic, 14.8% identified survivorship/ caring for myself; 13.8% body image and 7.6% stigma. Of all participants who chose medical care, 20.5% identified diagnosis as the most significant sub-topic; 18.9% identified treatment planning & options; 14.9% receiving treatment and 10.2% end of life issues. 56.2% of individuals who chose one of the top 16 challenges (n=589, 81% of all participants) requested more information about the challenge identified.
Conclusion:
Psychosocial issues related to daily life and a lack of relevant information posed some of the greatest challenges to LC patients. LC patients were more likely to identify daily life issues such as dealing with emotional needs, self-care, body image or changing relationships as their greatest challenge rather than medical care issues such as diagnosis, treatment planning or screening. Lung cancer patients have the right to have the enormous burden of lung cancer acknowledged by professional carers, policy makers and the general public (GLCC, 2015). Daily life challenges should be identified and alleviated as part of routine LC care to ensure LC patients and carers receive the necessary spectrum of support and information.
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P1.10 - Poster Session/ Advocacy (ID 228)
- Event: WCLC 2015
- Type: Poster
- Track: Advocacy
- Presentations: 1
- Moderators:
- Coordinates: 9/07/2015, 09:30 - 17:00, Exhibit Hall (Hall B+C)
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P1.10-004 - Novel Survey to Identify Single Greatest Challenge for Lung Cancer Patients and Carers (ID 2593)
09:30 - 09:30 | Author(s): W. Boerckel
- Abstract
Background:
People living with lung cancer (LC), LC survivors and carers are impacted by LC in different ways. The Global Lung Cancer Coalition (GLCC) recognises lung cancer patients’ and carers’ isolation and the challenges they face (GLCC, 2015). However for those affected by LC, limited data exists on the priority of their challenges, their ability to cope with these challenges and if enough relevant information and support is available. Identifiable variances between patient and carer experience and how challenges differ based on gender, age and nationality are also unknown. In 2013, The GLCC and Boehringer Ingelheim collaborated to create a global survey to identify these priorities and variances.
Methods:
A unique web-based survey was designed to isolate the single greatest challenge faced by individuals affected by LC. 200 specific and globally relevant challenges related to medical and psychosocial topics were identified by LC experts from the GLCC, grouped into categories and illustrated, with a small text descriptor. Each illustration was designed to represent a specific challenge, to be culturally sensitive and to overcome potential language barriers. At survey entry, respondents identified their greatest challenge as relevant to either daily life or medical care. Via an associated illustration, respondents chose subsequent sub-categories of challenges until one specific challenge was identified as being the most significant. Respondents answered 3 questions in relation to that challenge regarding: 1) availability of information 2) ability to cope 3) level of support required. Screening was conducted for age, gender, treatment and nationality. Respondents were asked whether they were living with LC, a LC survivor or a carer. The survey was available in 11 languages and promoted through the GLCC, LC clinicians, charities and associated support groups.
Results:
2871 individuals visited the survey site. 725 (25%) completed the survey. 17% were from North America, 38% Europe, 31% Asia/Pacific, 7% Central/ South America, 7% Middle East / Africa. 52% were carers, 18% were LC survivors and 30% were living with LC. 64% of LC patients chose a daily life challenge as their most significant, compared to a medical care challenge (36%); 55% of carers also chose a daily life challenge, compared to a medical care challenge (45%).
Conclusion:
A unique survey to effectively isolate the single greatest challenge for individuals affected by LC and to identify current gaps in care, support and information. Bespoke illustrations, combined with a simple and easy-to-complete method, created a globally relevant tool that could produce specific, action-orientated results in order to shape global and local approaches to LC patient care and carer support; alleviate potential shortcomings and optimise patient experience.
