Leukemia and Lymphoma Society

Introduction

The Leukemia and Lymphoma Society (LLS) Greater Illinois Chapter serves the state of Illinois. Volunteers work in communities throughout Illinois providing free education and support programs for individuals and families with leukemia and lymphoma. LLS is also involved with fundraising, policy and advocacy, and increasing awareness of the effects leukemia and lymphoma has on patients and society as whole. The purpose of this paper is to provide an overview of our health intervention project focusing on the community assessment, community diagnosis, selected health intervention model, the implemented health intervention plan, and commencing with the project evaluation and dissemination.

Community Assessment

Assessment of the Community Setting

The Leukemia and Lymphoma Society hosts tabling events throughout the city of Chicago. Chicago is the largest city in Illinois and the third largest city in the United States, with a population of almost three million people. Chicago is a global city, a thriving center of international trade and commerce, and encompasses a diverse population of all nationalities and cultures (City of Chicago, 2019).

Demographics

According to the United States Census Bureau (2017), the total population in Chicago is around 2,705,994. 51.5% of the population is female and 48.5% of the population is male. 78.5% of the population is over the age of 18 and 6.6% of the population is under 5 years of age. Multiple races and ethnicities reside in the greater Chicago area. The two most prominent races are whites (42% of the population) and African American (36.8% of the population). 2.9% of the population identifies as being two or more races (Data Access and Dissemination Systems (DADS, 2017).

Socioeconomic status

According to the United States Census Bureau (2017), 66.4% of the population is working and the unemployment rate is 9.9%. Regarding income distribution, 12.7% of the population have annual incomes between $100,000-149,999; 15.8% of the population have annual incomes between $50,000-74,999; 11.9% of the population have annual incomes between $35,000-49,000; 10.9% of the population have annual incomes between $15,000-24,999; and 10.3% of the population have incomes below $10,000. 20.1% of the population between the ages of 18-34 years old are reported to be below the poverty line (Data Access and Dissemination Systems (DADS), 2017).

Assessment of the Community Partner Site

Mission Statement/Vision

The Leukemia & Lymphoma Society (LLS) is the world’s largest voluntary health agency dedicated to blood cancer. The LLS mission is to: Cure leukemia, lymphoma, Hodgkin’s disease and myeloma, and improve the quality of life of patients and their families. LLS funds lifesaving blood cancer research around the world and provides free information and support services (LLS, 2016). LLS focuses on three key areas: research, education and support, and policy and advocacy.

History of Organization

LLS was born out of a family’s grief following the death of their teenage son. Robert “Robbie” Roesler de Villiers, son of a well-to-do New York family, was only 16 when he quickly fell ill with leukemia in 1944. Five years later, frustrated by the lack of effective treatments for what was then considered a hopeless disease, parents Rudolph and Antoinette de Villiers started a fundraising and education organization in their son’s name (LLS, 2016).

Headquartered in a small Wall Street office, the Robert Roesler de Villiers Foundation had only a few volunteers and a tiny budget.  Most leukemia patients, especially children, died within three months. Even by the mid-1950s, when the first-generation chemotherapy drugs began appearing, the disease remained a stubborn challenge (LLS, 2016). The Foundation reported in its 1955 annual report: “As of this date, Leukemia is 100% fatal. This is almost a unique situation among the many diseases to which man is susceptible” (LLS, 2016).

Driven by the de Villiers’ nearly boundless belief that leukemia and other blood cancers were indeed curable, the Foundation grew steadily, first opening in the New York City area. The organization, after changing its name to The Leukemia Society, was renamed The Leukemia Society of America in the 1960s to communicate a broad, national reach (LLS, 2016).

Organizational Structure and Staffing

LLS is a national organization, but within the Illinois Chapter (Chicago), there are employees (staff) and volunteers. There is a President & CEO, who is Dr. Louis Degennaro, Director Staff, Donor Development, Field Patient Access Staff, Leukemia Cup Staff, Light The Night Staff, Man & Woman of the Year Staff, Student Series Staff, Team in Training Staff, Support Staff and News & Media.

Funding Sources

The Leukemia & Lymphoma Society (LLS), has an office of public policy (OPP) who supports a policy agenda aimed at accelerating the development of new treatments for cancer and breaking down the barriers to care that patients often encounter. OPP may decide to develop a policy position on an issue, update and/or amend OPP’s position on an issue, or remain entirely neutral on an issue by not taking a formal position (LLS, 2016). Once LLS decides to engage on an issue affecting blood cancer patients, OPP works to identify a policy solution, assess internal and external capacity to engage on that issue, engage stakeholder partners, and leverage opportunities for progress (LLS, 2016). OPP then mobilizes to educate policymakers and apply pressure. Advocate volunteers are crucial to this effort.

OPP’s work to develop solutions, mobilize advocates and educate policymakers takes place on two fronts: legislators and executive officials.  The legislators work with both the state and federal lawmakers to advance laws that break down barriers to care for people with blood cancer and other pre-existing conditions—including limiting patients’ out-of-pocket costs; securing patients’ access to quality, affordable health insurance; and increasing funding for cancer research and drug reviews (LLS, 2016).  The executive officials of LLS strives to ensure that the patient voice is heard and considered by federal and state agencies like the Food and Drug Administration, the Centers for Medicare & Medicaid Services, and state insurance commissions and Medicaid agencies. LLS works with these policymakers to advance changes that expedite the approval of safe and effective drugs and hold insurance companies accountable for providing quality care to cancer patients (LLS, 2016).

Along with the different policies established, LLS has many fundraising events throughout the year, such as, Light The Night Walk, Leukemia Cup Regatta, Big Climb, Man & Woman of the Year and Students of the Year. LLS has also partnered with many places, such as, Burlington and UFCW.

Programs and Services

LLS offers many programs and services, such as, patient access, support for patients, education (videos, webcasts, booklets, drug lists).

Patient Access:

As the leading source of free blood cancer information, education and support for patients, survivors, families and healthcare professionals, LLS helps patients navigate their cancer treatment and ensures they have access to quality, affordable and coordinated care. Research will help us achieve an end to cancer. In the meantime, patients need help before, during and after their diagnosis and treatment. LLS is the leading nonprofit that does just that.

Reach Out to Others for Support:

The Leukemia & Lymphoma Society’s (LLS’s) support groups are the perfect place to talk with other people affected by blood cancers, including patients, family members and caregivers. The groups provide mutual support and offer the opportunity to discuss anxieties and concerns with others who share the same experiences. This sharing strengthens the family bond and enhances everyone’s ability to cope with cancer.

Family Support Groups:

The Leukemia & Lymphoma Society (LLS) Family Support Groups program gives patients and their families a place to go where they can share information, education and feelings in a comfortable and caring environment. Family Support Groups are for anyone affected by blood cancer and are free. There are currently 130 groups near some of our chapters and in outlying areas, with the number of groups growing each year. Groups generally meet once a month at a library, a local conference room or at LLS’s chapters. Two credentialed health/mental health professionals who have extensive oncology and group work experience facilitate all Family Support Groups. They’re prepared to handle sensitive issues such as loss, guilt, treatment questions and family stressors.

Education:

LLS provides many educational resources for patients and families. Some educational materials that LLS provides are, webcasts, booklets, videos and drug lists. The following is a list of past webcast that LLS did; General Treatment and Support, Childhood Blood Cancer, Leukemia, Lymphoma, Myeloma, Myelodysplastic Syndromes, Myeloproliferative Neoplasms (LLS, 2016).

Assessment of the Priority Population Description

Demographics of Target Population Served

The population that LLS serves is a wide variety (old, young, minorities, non minorities).

Social and Physical Determinants of Health

The social and physical determinants of health for the LLS population can vary because the population is so diverse. Some social and physical determinants include a person’s environment and neighborhood, education, income, employment, access to food, access to health services, physical and emotional support systems, and many more.

Assets to support health

The greater Chicago area has multiple hospitals and health clinics available to support the health of residents. Some of the major hospitals include Lurie Children’s Hospital, Mercy Hospital and Medical Center, Rush University Medical Center, and Northwestern Memorial Hospital. Additional assets to support health include green space such as parks and playgrounds, community gardens and farmers markets, health clinics, public transportation such as bus and train systems, grocery stores, schools and youth services to name a few.

Needs that create barriers to health

Some health barriers identified within some of the communities in Chicago include limited or lack of access to health care, limited access to healthcare providers and pharmacies, unsafe neighborhoods, lack of accessible grocery stores and limited access to healthy food options.

Knowledge, Beliefs, and Perceived Health Needs

The LLS has been at the forefront of fighting cancer since it was formed in 1949. The society has had a notable contribution by adding new knowledge and vision into the healthcare system. The LLS believes that cancer is a disease that is subject to extensive research. In this case, society prioritizes research based on the probable unmet medical needs (Harrison et al. 2012). In this case, the LLS seeks to usher in an era of cancer therapy, giving priority to the right treatment at the right time to the right patient. LLS believes that cancer is curable and treatable disease, and its hazards in society can be curbed. Besides, LLS believes that only the right treatment to the right patients is the solution to blood cancer and other types of cancers. Most importantly, the LLS considers that there is no mission impossible as far as cancer is concerned. The beliefs govern the operations of LLS since its formation.

In Chicago, LLS focuses mostly on creating awareness of blood cancer. In most cases, the knowledge of blood cancer, among other cancers, is limited within societies. Consequently, many deaths have been reported due to a lack of proper measures for dealing with the disease. As mentioned earlier, LLS believes that the right treatment to the right patient at the right time is the best way of fighting blood cancer. Thus, its perceived health needs include the creation of cancer awareness in an attempt to access cancer patients at the right time. Besides, LLS focuses mostly on offering survivorship clinics (Harrison et al., 2012). These are follow-up clinics for blood cancer, providing a comprehensive approach to supporting and monitoring cancer survivors. Alongside treatment, LLS extends its services to cancer survivors after treatment. In most cases, many organizations focus on cancer treatment and give less attention to the survivors. In this case, LLS terms this as a health need for cancer patients in the Chicago area.

Community Diagnosis

At The Leukemia and Lymphoma Society (LLS), we found that the lack of communication and interaction with the patients was a big problem. The volunteers at LLS will set up a table regarding information, education, support, etc. outside of the hospital’s cancer center, so that the patients could come up and talk to us about any issues or concerns they may have or for us to provide more insight about the cancer and some steps they can take.  When there, the lack of interaction with the patients is concerning. We need to figure out a way to get our information about their cancer to them and make sure they are being heard.

The problem with lack of communication and interaction with the patients is that we have so much information and support for them that could be helpful for them and their families. Without the information and support we can provide the patients, they can be uneducated on their cancer, have many questions they are afraid to ask, or they feel like they have no support from a community. LLS needs to come up with a better way to get our material to the patients.

Health Intervention Model

Peplau’s Interpersonal Relations Theory focuses on the nurse-client relationship and the therapeutic process that takes place (Gonzao, 2019). We believe that this particular theory could help LLS in achieving more interaction and better communication with the patients. Communication that occurs in this context involves complex factors such as environment, in addition to attitudes, practices and beliefs in the dominant culture (Gonzao, 2019). According to Gonzalo, Peplau’s interpersonal relations theory defines four stages of the relationship that achieve a common goal: the orientation phase, identification phase, exploitation phase, and resolution phase. Below is a description of the phases by Gonzalo.

• Orientation Phase: The nurse engages the patient in treatment, and the patient is able to ask questions and receive explanations and information. This stage helps the patient develop trust and is where first impressions about the nurse and health care system begin to evolve. Make sure the patient is able to define needs.
• Identification Phase: The patient and nurse begin to work together. These interactions provide the basis for understanding, trust and acceptance as the patient becomes an active participant in treatment. Interdependent goal setting.
• Exploitation Phase: The patient takes advantage of all the services offered, exploiting the nurse-patient relationship to address treatment goals. Patient actively seeking and utilizing help.
• Resolution Phase: This phase occurs after other phases are completed successfully. As a result of effective communication, the patient’s needs are met, and he or she moves toward full independence. The patient no longer needs help, and the relationship ends.”

Communication is so essential for being successful with our patients. There are many types of communication that we need to keep in mind when educating. The Transactional model of communication is the exchange of messages between sender and receiver where each person takes turns to send or receive messages (Edelman, 2018). Here, both sender and receiver are known as communicators and their role reverses each time in the communication process as both processes of sending and receiving occurs at the same time (Edelman, 2018). Through the transactional model, we are actively listening and educating the clients about the services that we provide through LLS. Through this, we are creating a relationship with the clients, family and friends, to show that we are here to support them and provide any education they might need regarding their cancer (Edelman, 2018).

Fit, Relevance, and Application of Model

Peplau’s Interpersonal Relations Therapy would address the problem of lack of communication and interaction with the patient at LLS. The theory explains the purpose of nursing is to help others identify their felt difficulties and that nurses should apply principles of human relations to the problems that arise at all levels of experience. Through Peplau’s Theory, LLS can help by using therapeutic interaction to help the patients. LLS would then be able to provide the information that these patients need about their cancer and provide support.

Our main planned intervention is to improve the engagement with individuals at tabling events. Communicating with the patients at hospitals is our primary way of spreading awareness of LLS. The resources and services that LLS provides can significantly alleviate stress from a patient’s life; however, many times there is a lack of awareness that LLS is tabling. If doctors and other hospital staff are aware of the days we are tabling, then they can communicate that to their specific patients. That way patients are more likely to stop by at the table and learn about the services. Once a patient signs up to be a part of LLS, it’s important to maintain that relationship and work together towards a goal. The four phases of this theory can help that relationship grow because communication and keeping in contact is key until the patient’s needs are met. LLS focuses on advocacy and education as a means to improve the quality of life of patients and their families and this theory can help us achieve that therapeutic relationship with the patient, family and community.

Health Promotion Intervention

Peplau’s theory involves the development of interpersonal relationships between nurses and patients. As a way of putting the theory into practice, there is a need to set measurable goals on how to provide a lasting solution to problems facing the patients (Senn, 2012). Planned intervention is practiced by medical practitioners to intercede in health situations by offering services such as counseling. The process involves continuous efforts to rectify the patient’s conditions for a better environment and health. The planned intervention goes hand in hand with Peplau’s theory because it reinforces the method and helps nurses interact with patients for psychological motivation (Senn, 2012). There is a need for having a close relationship with the patients and their relatives to provide counseling and self-care knowledge. As a medical practitioner, every nurse should oversee the health condition of a patient and advise accordingly.

However, the planned intervention of training the patients fit with Peplau’s theory since it provides a therapeutic relationship between a nurse and their clients. The response reflects Peplau’s approach of interpersonal relations by exerting a force of personality development as well as maturing. Through the intervention, there is an exhibition of nurse-patient relationship processes such as communication and integration of therapeutic patterns (Senn, 2012). In this fostered relationship, the roles of the nurse are highly valuable, and the wellbeing of a patient is dependent on these roles. The problem-solving skills of the nurse are essential in such interventions to help the patient overcome psychological distress. The nurses may get directly involved in improving the health status of the patient or producing behavior changes. However, planned intervention may influence patients indirectly through running campaigns focused on health promotion.

Goals/Objectives (SMART)

SMART Goal 1: Increase awareness about LLS’s presence at the hospitals we partner with.

1. Specific: Develop a monthly calendar for the days LLS will be tabling and distribute it to the medical staff. If they know in advance the days we are tabling, they can encourage patients to meet with us before or after their appointments.
2. Measurable: Track how many patients or family members stop by our table though a simple tally system in Excel or other electronic documents.
3. Attainable/achievable: Set a goal to engage with three to five patients at each tabling event. Again, this can be measured through an electronic tally system or document.
4. Relevant/realistic: By increasing awareness among staff, there is a higher probability that more patients will be referred to our services. If we are able to reach more patients, we will be able to provide them with invaluable resources to assist them through their treatment/medical course. This will hopefully provide some stress relief during this difficult time and improve outcomes for our patients and their families.
5. Time bound: An electronic, printable calendar with our upcoming tabling events will be created by the end of quarter 4 and distribution will begin over spring break for all known quarter 5 dates.

SMART Goal 2: Create a digital communication platform.

1. Specific: create a digital educational platform that is specific to the diagnosis of the patient with both digital and mailed written materials
2. Measurable: Analyze the amount of passed out business cards versus the number of emails with interest in more information.
3. Attainable/achievable: It is attainable by implementing this project plan and making adjustments as needed.
4. Relevant/Realistic: This goal is related to the specific diagnosis of the patient within our defined population of blood cancer.
5. Time Bound: Timing is dependent on the patient and their ability to reach out to the email. The emails will be responded to within 3 days.

Implementation

Barriers and Facilitators

The major barrier resulting in the inability to implement our health intervention project was the development and spread of COVID-19. Implementing our project involved in person collaboration with LLS staff, clinicians and health care workers at the hospital LLS partners with, and most importantly, our patients. Given that most of our patients are immunocompromised and we could no longer meet with them in person, we were unable to connect with them and track the number of patients we were meeting with. In regards to developing our digital platform, we were unable to meet with additional volunteers and LLS support staff who would have assisted in creating our patient portal. Without the unfortunate disruptions of COVID-19, the probability of implementing our intervention project was high and involved several facilitators.

The main facilitators included the development of our SMART goals and the use of LLS volunteers to assist with implementing them. LLS has a robust network of volunteers with backgrounds in multiple disciplines and careers ranging from IT to social work. Under the guidance of our LLS supervisor, our plan included meeting with a specific number of patients during each tabling event and recording our interactions to track our progress. In developing a calendar with each hospital and facility LLS partners with, staff would be able to alert patients to the days LLS would be at each facility. This would allow patients to prepare in advance to meet with us and discuss any pertinent health needs.

With regards to our online patient portal, LLS volunteers would have helped in creating templates and education materials specific to patient requests. Volunteers would review patient information cards from tabling events, compiling an email with specific information requested by the patient. This would ensure our patients are receiving health information related to their specific diagnosis, enabling them to fully utilize LLS benefits.

Actual Timeline

Our proposed timeline was around two weeks for the calendar development and tracking method. We were planning on collaborating with LLS support staff and volunteers during the spring break in 2019. However, it was during this time that the city of Chicago initiated the stay at home order. Two weeks is still a reasonable timeline to develop a master calendar and begin collaboration with support staff on the design of the patient portal. Full development and utilization of the patient portal will likely take around five to six months, as this will allow for modifications and technical troubleshooting.

Changes to Original Health Intervention Plan

As stated above, Peplau’s theory involves the development of interpersonal relationships between nurses and patients. Since COVID-19, we unfortunately had some changes to our original health intervention plan. We were not able to get into the hospitals and interact with the patients as planned. We were also not able to do our online patient portal due to not being able to interact with the patients at tabling events. During these hard times, LLS had us instead make phone calls to all patients making sure they knew about the financial resources that LLS was able to provide during the pandemic. We also were able to make sure that all resources to doctors, caregivers and patients, were well known.

Evaluation

Formative Evaluation

The health intervention would have been evaluated by providing surveys through the online portal system and at tabling events. The surveys would have included questions regarding the effectiveness of communication between LLS staff and patients. It would also include questions about applicability and appropriateness of education materials available on the online portal. Through these surveys, patients would have the opportunity to voice their opinions regarding areas of improvement and types of education material and services they would like offered. Then, LLS staff members would evaluate the surveys and identify areas of improvement. Once these areas of improvement are determined, the patient support committee would meet and establish new goals to enhance patient satisfaction regarding communication, education and support with the online portal.

At LLS, our community diagnosis and primary health need is to improve communication and interactions with patients. This diagnosis would be addressed through our survey intervention. The surveys would help determine where the deficits are and what areas need to be improved. Patients have mentioned how invaluable LLS resources are and how LLS has impacted their lives for the better. These resources are supplemental and can only benefit patients. Therefore, it is important for LLS to spread awareness and cultivate a better connection with the patients.

Due to the pandemic, our goal has been delayed. The goal was to increase awareness about LLS’ presence at hospitals in order to offer patients more resources. By creating a digital communication platform, we could provide more health education to our patients. Since it is an online platform, this goal is still appropriate and relevant. However, due to COVID-19, we needed to alter some of our intervention to meet our goal appropriately. Our goal was to increase awareness with a monthly calendar at our tabling events at the hospital’s cancer centers and create a digital educational platform. We have not been able to undertake tabling events and activities due to the pandemic, but we have been able to make calls to patients and still stay in contact with them. We have been able to provide necessary information and resources that they may need due to the pandemic, such as financial assistance and education. The intervention is culturally sound because it is able to accommodate all cultures. Our resources have multiple language options. The brochures show culturally diverse groups of the people. LLS understands the importance of different cultures and strives to offer culturally competent care to everyone.

Summative Evaluation

The long term goal of our health intervention is to increase awareness and interest about the resources LLS offers. The goal is to improve communication between patients and LLS and provide valuable health information. The health intervention will increase the capacity of the community. By increasing awareness of our presence, we will gain more interested people in the community. The community will use our resources and see how beneficial they are. Thus, we will see an increase in patient education and knowledge.

Our interventions are sustainable due to the fact that they would be on a digital platform. The online platform helps keep everything organized and in one place. We can collect information electronically and can easily update information, which would improve continuity of care. Accessibility will help keep it sustainable. We would be able to contact patients more frequently and send them online resources. Patients can also refer to the material at any time since it is online, which can help in the long run. Increasing access and usability to internet connection is something that would need to be in place. For those with limited internet access, we can still offer them paper resources via mail rather than in-person due to COVID-19. However, for long term growth of our intervention, internet accessibility, which could require funding in some communities, would be ideal to sustain our goal.

From our online survey results, we will be able to identify areas of improvement. This will help us become a better resource to our patients and be a sustainable program. LLS and the tabling hospitals can work together to create a way to allow nursing students to shadow the doctors of blood cancer patients. We would be able connect better with the patients and they will be more inclined to receive resources that LLS provides. Due to the COVID-19, we could set up Zoom events with the volunteer service at the hospitals to allow LLS to continue forming long-lasting and sustainable relationships with the patients.

 

1. Dissemination
   1. How was this evaluative data reported, shared, and distributed?

 

1. What changes are recommended for improvements to the health intervention project to promote health and prevent disease?

There are no known preventive measures for leukemia and Lymphoma. However, minimizing triggers can significantly lower the risk of developing the disease. Lifestyle modifications are ideal for promoting health and preventing leukemia and lymphoma (Parodi et al., 2016). Interventions such as physical fitness, staying at a healthy weight, and observing a healthy eating pattern can help protect individuals against lymphoma. People can also avoid exposure to industrial chemicals and pesticides, alongside desisting from tobacco use (Parodi et al., 2016). Preventive measures involve avoiding all risk factors associated with the disease. Availing information on effective means of preventing the development of leukemia and lymphoma would promote healthy lifestyle choices. The proposed preventive measures are inexpensive and applicable at the individual level. To reach a broad target audience, the project will use the internet, especially social media, where there is a large number of consumers.

 

1. What are recommendations for collaboration between future DePaul Nursing Students and LLS Site?

Some recommendations for collaboration between future DePaul nursing students and LLS include shadowing the doctors so we can have direct access to patients to provide them material and resources. Also, keeping a list of hospitals that allow shadowing, who we have tabling events with, and who have been able to have us have direct communication with the patients.

 

1. Conclusion

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