Presentation
PS3 - Challenges and Recommendations With Data Collection on the Cancer Care Continuum
SessionPoster Session 2
DescriptionBackground:
Cancer entails significant, life-changing experiences, and many families will encounter these experiences due to the overwhelming prevalence of cancer. To illustrate, approximately 40% of men and women will be diagnosed with cancer at some point throughout their lives. In fact, the National Cancer Institute estimates that there will be over 2 million new cases of cancer with over 600,000 cancer related deaths in 2024 alone (NCI). Although these facts are alarming, they do not reflect the complete cancer picture as these statistics are only relevant for one phase of the cancer care continuum (i.e., diagnosis).
Cancer care applies to healthy individuals as much as it does to those who have been diagnosed, and the care continuum consisting of multiple phases for each individual, including risk assessment, primary prevention, detection, diagnosis, treatment, post-treatment survivorship, and end-of-life care (Taplin; Zapka Taplin et al., 2012). The phase of risk assessment entails the identification of the environmental (e.g., radiation exposure), behavioral (e.g., smoking), and familial factors (e.g., genetics) that influence health and cancer. Prevention refers to mechanisms or strategies that could be employed to reduce the overall risk of acquiring cancer. Detection encompasses screening and testing for precursors as well as symptoms. Diagnosis involves a formal evaluation following abnormal tests and procedures to identify the presence of cancer. Following the diagnosis is the treatment of cancer. For patients exhibiting precursors to cancer, the primary objective of treatment is to eliminate the development towards actual cancer. For patients who are already symptomatic, cancer treatments vary based upon the individual case with treatments often consisting of surgery, radiation, chemotherapy, and immunotherapies. At the conclusion of treatment, patients move to post-treatment survivorship, which consists of the surveillance and management of potentially long lasting side effects, the identification of recurrences of previous cancers, and the establishment of new cancers. If survivorship becomes nonviable, patients move to the end-of-life care phase, which targets advanced care planning, palliative care, and bereavement support.
Each phase of the continuum has some similarities with one another, but they also have distinct differences that necessitate varied organizations, people, processes, equipment, and considerations. Thus, when conducting investigations and studies throughout the cancer care continuum, researchers must employ a nuanced approach. New insights pertinent to managing aspects of cancer care require thoughtful studies and data collection, and these insights are especially crucial considering the significance and gravity of cancer as well as the profound impact cancer has on individual’s lives and the people surrounding them. The purpose of this poster is to present challenges associated with collecting data throughout the cancer care continuum, in hopes of collating information and strategies to offer recommendations to aid research recruitment for cancer and similar diseases. These aim to mitigate some of the difficulties associated with collecting data across different phases of the care continuum, and are briefly introduced below.
Challenges with Data Collection within the Cancer Care Continuum and Associated Strategies:
The risk assessment, prevention, and detection phases have similar and unique difficulties given their distance from the other phases on the cancer care continuum. Individuals in these phases are not directly labeled as cancer patients, and their knowledge surrounding cancer prevention can vary drastically. Unless they have a personal history with cancer (e.g., a friend or family member), their association with the disease and willingness to commit to participation in research may be lower. Additionally, it may be difficult for some to discuss and learn about their family history or any genetic predispositions to cancer. These issues make it challenging to both identify and understand individuals’ knowledge in this phase. Within the detection phase, for some, it can be difficult to access the necessary testing facilities or have the knowledge of how often to get tested. If the participant pool of interest is not getting regularly tested, it is challenging to understand their experience and know where to provide support. This is an area where personal connections to the disease may strongly influence participants' understanding of the risk of cancer and their willingness to pursue further testing. Within these phases, it can be valuable to partner with public health strategy teams that produce national screening campaigns and cancer care fundraising efforts to access the greatest population. With the general population serving as a potential participant pool utilizing public survey platforms like MTurk and Prolific alongside social media platforms could serve as valuable data sources. Utilizing flyers, word of mouth, and provider referrals can be valuable in gathering individuals in the early detection phase of cancer care.
Receiving a cancer diagnosis is an emotional time for both the patient and their support system because it affects every aspect of their lives. In this heightened emotional state, it can be challenging to find time and space to participate in research. The quantity of information and planning that must occur to begin planning for treatment can be immense, making it difficult for patient’s to provide their insights. There may also be the mental toll of future treatment costs coming up with their individualized treatment plans. In the diagnosis phase, a more specific approach is required for participant identification. Thus, collaboration with testing centers, family practices, lab facilities, and mammogram centers is critical to identifying participants. There is also potential to utilize both healthcare and community resources. For example, utilizing both oncology centers as well as local community support groups are valuable resources. When patients are in the diagnosis phase, engaging the oncological team and support systems around the patient are necessary to supplement some patient insights.
The experience of going through treatment is typically traumatic for the patient and their family, so discussing that experience may be triggering for some people. Treatment not only puts the patient, but also their support systems, under a large amount of stress. The amount of stress placed on the body during treatment can leave patients without much energy left to discuss their experience or fill out surveys. For those that do go through chemotherapy, there can be long term side effects with the memories they have during that time, creating a gap in understanding the patient’s experience in their words. There is potential to reach out to volunteers at local cancer fundraising events or cancer support centers to identify potential participants. Individuals in this phase may also be sharing their experience through social media or blogs. These online resources in conjunction with local services provide potential opportunities for participant data collection.
Attempting to gather insights from patients in their end-of-life care has been a well established problem for researchers (McMillan & Weitzner, 2003). This is an emotional stage where people want to spend time with their loved ones and may not be interested in spending their final moments with researchers. If patients are in the end-of-life care state of their treatment, employing patient family members, hospice teams, and oncologists may be necessary to aid in understanding a patient’s experience. This stage can vary by patient; thus, utilizing the individual’s closest to the patient is critical to supplement for patient insights when not possible.
Conclusion:
There are phase dependencies for data collection and the data collection methods utilized in the various stages of cancer care. The individual care plans may vary by patient, however this poster aims to identify general data collection challenges for future researchers as well as provide recommendations for mitigation.
Cancer entails significant, life-changing experiences, and many families will encounter these experiences due to the overwhelming prevalence of cancer. To illustrate, approximately 40% of men and women will be diagnosed with cancer at some point throughout their lives. In fact, the National Cancer Institute estimates that there will be over 2 million new cases of cancer with over 600,000 cancer related deaths in 2024 alone (NCI). Although these facts are alarming, they do not reflect the complete cancer picture as these statistics are only relevant for one phase of the cancer care continuum (i.e., diagnosis).
Cancer care applies to healthy individuals as much as it does to those who have been diagnosed, and the care continuum consisting of multiple phases for each individual, including risk assessment, primary prevention, detection, diagnosis, treatment, post-treatment survivorship, and end-of-life care (Taplin; Zapka Taplin et al., 2012). The phase of risk assessment entails the identification of the environmental (e.g., radiation exposure), behavioral (e.g., smoking), and familial factors (e.g., genetics) that influence health and cancer. Prevention refers to mechanisms or strategies that could be employed to reduce the overall risk of acquiring cancer. Detection encompasses screening and testing for precursors as well as symptoms. Diagnosis involves a formal evaluation following abnormal tests and procedures to identify the presence of cancer. Following the diagnosis is the treatment of cancer. For patients exhibiting precursors to cancer, the primary objective of treatment is to eliminate the development towards actual cancer. For patients who are already symptomatic, cancer treatments vary based upon the individual case with treatments often consisting of surgery, radiation, chemotherapy, and immunotherapies. At the conclusion of treatment, patients move to post-treatment survivorship, which consists of the surveillance and management of potentially long lasting side effects, the identification of recurrences of previous cancers, and the establishment of new cancers. If survivorship becomes nonviable, patients move to the end-of-life care phase, which targets advanced care planning, palliative care, and bereavement support.
Each phase of the continuum has some similarities with one another, but they also have distinct differences that necessitate varied organizations, people, processes, equipment, and considerations. Thus, when conducting investigations and studies throughout the cancer care continuum, researchers must employ a nuanced approach. New insights pertinent to managing aspects of cancer care require thoughtful studies and data collection, and these insights are especially crucial considering the significance and gravity of cancer as well as the profound impact cancer has on individual’s lives and the people surrounding them. The purpose of this poster is to present challenges associated with collecting data throughout the cancer care continuum, in hopes of collating information and strategies to offer recommendations to aid research recruitment for cancer and similar diseases. These aim to mitigate some of the difficulties associated with collecting data across different phases of the care continuum, and are briefly introduced below.
Challenges with Data Collection within the Cancer Care Continuum and Associated Strategies:
The risk assessment, prevention, and detection phases have similar and unique difficulties given their distance from the other phases on the cancer care continuum. Individuals in these phases are not directly labeled as cancer patients, and their knowledge surrounding cancer prevention can vary drastically. Unless they have a personal history with cancer (e.g., a friend or family member), their association with the disease and willingness to commit to participation in research may be lower. Additionally, it may be difficult for some to discuss and learn about their family history or any genetic predispositions to cancer. These issues make it challenging to both identify and understand individuals’ knowledge in this phase. Within the detection phase, for some, it can be difficult to access the necessary testing facilities or have the knowledge of how often to get tested. If the participant pool of interest is not getting regularly tested, it is challenging to understand their experience and know where to provide support. This is an area where personal connections to the disease may strongly influence participants' understanding of the risk of cancer and their willingness to pursue further testing. Within these phases, it can be valuable to partner with public health strategy teams that produce national screening campaigns and cancer care fundraising efforts to access the greatest population. With the general population serving as a potential participant pool utilizing public survey platforms like MTurk and Prolific alongside social media platforms could serve as valuable data sources. Utilizing flyers, word of mouth, and provider referrals can be valuable in gathering individuals in the early detection phase of cancer care.
Receiving a cancer diagnosis is an emotional time for both the patient and their support system because it affects every aspect of their lives. In this heightened emotional state, it can be challenging to find time and space to participate in research. The quantity of information and planning that must occur to begin planning for treatment can be immense, making it difficult for patient’s to provide their insights. There may also be the mental toll of future treatment costs coming up with their individualized treatment plans. In the diagnosis phase, a more specific approach is required for participant identification. Thus, collaboration with testing centers, family practices, lab facilities, and mammogram centers is critical to identifying participants. There is also potential to utilize both healthcare and community resources. For example, utilizing both oncology centers as well as local community support groups are valuable resources. When patients are in the diagnosis phase, engaging the oncological team and support systems around the patient are necessary to supplement some patient insights.
The experience of going through treatment is typically traumatic for the patient and their family, so discussing that experience may be triggering for some people. Treatment not only puts the patient, but also their support systems, under a large amount of stress. The amount of stress placed on the body during treatment can leave patients without much energy left to discuss their experience or fill out surveys. For those that do go through chemotherapy, there can be long term side effects with the memories they have during that time, creating a gap in understanding the patient’s experience in their words. There is potential to reach out to volunteers at local cancer fundraising events or cancer support centers to identify potential participants. Individuals in this phase may also be sharing their experience through social media or blogs. These online resources in conjunction with local services provide potential opportunities for participant data collection.
Attempting to gather insights from patients in their end-of-life care has been a well established problem for researchers (McMillan & Weitzner, 2003). This is an emotional stage where people want to spend time with their loved ones and may not be interested in spending their final moments with researchers. If patients are in the end-of-life care state of their treatment, employing patient family members, hospice teams, and oncologists may be necessary to aid in understanding a patient’s experience. This stage can vary by patient; thus, utilizing the individual’s closest to the patient is critical to supplement for patient insights when not possible.
Conclusion:
There are phase dependencies for data collection and the data collection methods utilized in the various stages of cancer care. The individual care plans may vary by patient, however this poster aims to identify general data collection challenges for future researchers as well as provide recommendations for mitigation.
Authors
Event Type
Poster Presentation
TimeTuesday, April 14:45pm - 6:15pm EDT
LocationFrontenac Foyer