The Journal of community and supportive oncology, 2015
Qualitative studies have identified barriers to communication and informed decision making among ... more Qualitative studies have identified barriers to communication and informed decision making among breast cancer survivors making treatment decisions. The prevalence of these barriers is unknown. To quantify the need for decision support among breast cancer survivors. We surveyed 2,521 breast cancer survivors participating in an online registry hosted by the Cancer Support Community to find out what proportion of breast cancer patients: made decisions during their first visit with a specialist; received satisfactory information before that visit; asked questions and received responses; and endorsed expanded use of decision support. We received 1,017 (41%) responses and analyzed 917 surveys from women who lived in the United States. Most of the respondents recalled making treatment decisions during their first visit (52%). A minority (14%) received information before the first specialist visit. At least 25% of respondents rated their satisfaction below 7 on a scale of 10 for decision-m...
... Jyotsna Changrani, MD, MPH, Morton Lieberman, PhD, Mitch Golant, PhD, Peggy Rios, PhD, Jennif... more ... Jyotsna Changrani, MD, MPH, Morton Lieberman, PhD, Mitch Golant, PhD, Peggy Rios, PhD, Jennifer Damman, BA, Francesca Gany, MD, MS ... This study examines the viability of OSGs for Hispanic immigrants with breast cancer and attempts to bridge the digital divide with a ...
The Journal of community and supportive oncology, 2015
Qualitative studies have identified barriers to communication and informed decision making among ... more Qualitative studies have identified barriers to communication and informed decision making among breast cancer survivors making treatment decisions. The prevalence of these barriers is unknown. To quantify the need for decision support among breast cancer survivors. We surveyed 2,521 breast cancer survivors participating in an online registry hosted by the Cancer Support Community to find out what proportion of breast cancer patients: made decisions during their first visit with a specialist; received satisfactory information before that visit; asked questions and received responses; and endorsed expanded use of decision support. We received 1,017 (41%) responses and analyzed 917 surveys from women who lived in the United States. Most of the respondents recalled making treatment decisions during their first visit (52%). A minority (14%) received information before the first specialist visit. At least 25% of respondents rated their satisfaction below 7 on a scale of 10 for decision-m...
In this cross-sectional study, we tested whether the coping styles of emotional suppression and f... more In this cross-sectional study, we tested whether the coping styles of emotional suppression and fighting spirit were associated with mood disturbance in cancer patients participating in professionally led community-based support groups even when demographic, medical, and group support variables were taken into account. A heterogeneous sample of 121 cancer patients (71% female, 29% male) completed the Courtauld Emotional Control Scale (CECS), the Mini-Mental Adjustment to Cancer Scale (Mini-MAC), a measure of perceived group support, and the Profile of Mood States (POMS). Consistent with hypotheses, lower emotional suppression and greater adoption of a fighting spirit, in addition to older age and higher income, were associated with lower mood disturbance. Gender, time since diagnosis, presence of metastatic disease, time in the support group, perceived group support, cognitive avoidance, and fatalism were unrelated to mood disturbance. Expression of negative affect and an attitude o...
Proceedings of the 17th ACM international conference on Supporting group work - GROUP '12, 2012
ABSTRACT For users of online support groups, prior research has suggested that a positive social ... more ABSTRACT For users of online support groups, prior research has suggested that a positive social environment is a key enabler of coping. Typically, demonstrating such claims about social interaction would be approached through the lens of sentiment analysis. In this work, we argue instead for a multifaceted view of emotional state, which incorporates both a static view of emotion (sentiment) with a dynamic view based on the behaviors present in a text. We codify this dynamic view through data annotations marking information sharing, sentiment, and coping efficacy. Through machine learning analysis of these annotations, we demonstrate that while sentiment predicts a user's stress at the beginning of a chat, dynamic views of efficacy are stronger indicators of stress reduction.
The Journal of community and supportive oncology, 2014
As non-small-cell lung cancer (NSCLC) treatments improve and patients live longer, it is importan... more As non-small-cell lung cancer (NSCLC) treatments improve and patients live longer, it is important to develop interventions to help patients live fuller lives. We sought to identify key components of quality of life (QOL) in determining therapeutic decision making and overall value of life extension in patients with NSCLC. Three focus groups (n = 16) and telephone interviews (n = 15) were conducted with NSCLC patients (N = 31) to explore symptoms considered important to QOL. A trade-off format was used to assess the value of life extension relative to QOL. Patients were asked to consider a hypothetical treatment option offering a modest (3 month) life extension. Patients' mean age was 61.6 years, 67.6% were women, 77.4% were white, and 48.4% had stage III/IV disease. In all, 68% of patients conceptualized emotions as symptoms of NSCLC. Key symptoms changed over time: Patients reported feeling shock and fear at diagnosis (74%), and feeling fear or loneliness during the beginning ...
The Journal of community and supportive oncology, 2015
Qualitative studies have identified barriers to communication and informed decision making among ... more Qualitative studies have identified barriers to communication and informed decision making among breast cancer survivors making treatment decisions. The prevalence of these barriers is unknown. To quantify the need for decision support among breast cancer survivors. We surveyed 2,521 breast cancer survivors participating in an online registry hosted by the Cancer Support Community to find out what proportion of breast cancer patients: made decisions during their first visit with a specialist; received satisfactory information before that visit; asked questions and received responses; and endorsed expanded use of decision support. We received 1,017 (41%) responses and analyzed 917 surveys from women who lived in the United States. Most of the respondents recalled making treatment decisions during their first visit (52%). A minority (14%) received information before the first specialist visit. At least 25% of respondents rated their satisfaction below 7 on a scale of 10 for decision-m...
... Jyotsna Changrani, MD, MPH, Morton Lieberman, PhD, Mitch Golant, PhD, Peggy Rios, PhD, Jennif... more ... Jyotsna Changrani, MD, MPH, Morton Lieberman, PhD, Mitch Golant, PhD, Peggy Rios, PhD, Jennifer Damman, BA, Francesca Gany, MD, MS ... This study examines the viability of OSGs for Hispanic immigrants with breast cancer and attempts to bridge the digital divide with a ...
The Journal of community and supportive oncology, 2015
Qualitative studies have identified barriers to communication and informed decision making among ... more Qualitative studies have identified barriers to communication and informed decision making among breast cancer survivors making treatment decisions. The prevalence of these barriers is unknown. To quantify the need for decision support among breast cancer survivors. We surveyed 2,521 breast cancer survivors participating in an online registry hosted by the Cancer Support Community to find out what proportion of breast cancer patients: made decisions during their first visit with a specialist; received satisfactory information before that visit; asked questions and received responses; and endorsed expanded use of decision support. We received 1,017 (41%) responses and analyzed 917 surveys from women who lived in the United States. Most of the respondents recalled making treatment decisions during their first visit (52%). A minority (14%) received information before the first specialist visit. At least 25% of respondents rated their satisfaction below 7 on a scale of 10 for decision-m...
In this cross-sectional study, we tested whether the coping styles of emotional suppression and f... more In this cross-sectional study, we tested whether the coping styles of emotional suppression and fighting spirit were associated with mood disturbance in cancer patients participating in professionally led community-based support groups even when demographic, medical, and group support variables were taken into account. A heterogeneous sample of 121 cancer patients (71% female, 29% male) completed the Courtauld Emotional Control Scale (CECS), the Mini-Mental Adjustment to Cancer Scale (Mini-MAC), a measure of perceived group support, and the Profile of Mood States (POMS). Consistent with hypotheses, lower emotional suppression and greater adoption of a fighting spirit, in addition to older age and higher income, were associated with lower mood disturbance. Gender, time since diagnosis, presence of metastatic disease, time in the support group, perceived group support, cognitive avoidance, and fatalism were unrelated to mood disturbance. Expression of negative affect and an attitude o...
Proceedings of the 17th ACM international conference on Supporting group work - GROUP '12, 2012
ABSTRACT For users of online support groups, prior research has suggested that a positive social ... more ABSTRACT For users of online support groups, prior research has suggested that a positive social environment is a key enabler of coping. Typically, demonstrating such claims about social interaction would be approached through the lens of sentiment analysis. In this work, we argue instead for a multifaceted view of emotional state, which incorporates both a static view of emotion (sentiment) with a dynamic view based on the behaviors present in a text. We codify this dynamic view through data annotations marking information sharing, sentiment, and coping efficacy. Through machine learning analysis of these annotations, we demonstrate that while sentiment predicts a user's stress at the beginning of a chat, dynamic views of efficacy are stronger indicators of stress reduction.
The Journal of community and supportive oncology, 2014
As non-small-cell lung cancer (NSCLC) treatments improve and patients live longer, it is importan... more As non-small-cell lung cancer (NSCLC) treatments improve and patients live longer, it is important to develop interventions to help patients live fuller lives. We sought to identify key components of quality of life (QOL) in determining therapeutic decision making and overall value of life extension in patients with NSCLC. Three focus groups (n = 16) and telephone interviews (n = 15) were conducted with NSCLC patients (N = 31) to explore symptoms considered important to QOL. A trade-off format was used to assess the value of life extension relative to QOL. Patients were asked to consider a hypothetical treatment option offering a modest (3 month) life extension. Patients' mean age was 61.6 years, 67.6% were women, 77.4% were white, and 48.4% had stage III/IV disease. In all, 68% of patients conceptualized emotions as symptoms of NSCLC. Key symptoms changed over time: Patients reported feeling shock and fear at diagnosis (74%), and feeling fear or loneliness during the beginning ...
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