Bone Marrow Transplant Survivorship Care Plan: Bridging the Knowledge and Care Access Gap: A Pilot Study

In 2006, the Institute of Medicine (IOM), now known as National Academy of Medicine (NAM), recognized that there is a lack of continuation of cancer survivor care in the United States. The IOM recommended that all comprehensive cancer centers address the need of survivor care by using survivorship care plans (SCP) for all patients who have received chemotherapy with curative intent. The SCP is a personalized documentation that includes treatment summaries, potential side effects, complications, late effects of chemotherapy, recommendation for follow up care, secondary cancer screening recommendations, immunization recommendations, and community resources. The purpose of this DNP project is to address care access and knowledge gap of patients and their primary care and/or referring providers with the use of the SCP in patients who have received allogeneic hematopoietic stem cell transplant. The SCP will be integrated into the electronic health record (EHR) system in the local comprehensive cancer center. The objectives and implementation steps for this project are: (1) Develop a bone marrow transplant (BMT) SCP that will be implemented in a comprehensive cancer facility (2) Conduct telephone interviews to gather information to be used to create a formal survey to be used on a larger scale for the SCP (3) Develop and administer formal survey to all patients to identify potential knowledge gap and gain insight on what information should be included in SCP (4) Develop BMT SCP with the use of electronic health record (EHR) (5) Disseminate study findings. Evidenced literature was utilized to evaluate survivorship care and the utilization of SCP in the United States. Pros and cons of existing SCP that have been utilized for other types of cancers were assessed to guide the development of the SCP in this project. Survivorship care plans in other cancers have been found to increase patient and referring/primary care provider's knowledge on treatment received and how to manage lasting effects of cancer treatments. The SCP also empowers patients to allow for greater autonomy. The biggest challenge of implementing SCP is amount of time involved in completing the care plan. There is currently no literature on the use of SCP in the bone marrow transplant (BMT) population. Five patients were selected for a telephone interview to guide the research team in developing a formal survey that was administered to all patients who had received allogeneic hematopoietic stem cell transplant at least one year prior. At the beginning of the project, a total of 76 patients were alive and fit the inclusion criteria of the study. The surveys would assist the research team in modifying the existing SCP that could be individualized and customized. The SCP had been integrated into the EHR system for easy modification per individual's needs. Results of the surveys will be evaluated and utilized in developing programs that will improve BMT patients' quality of life.

Running head: BONE MARROW TRANSPLANT SURVIVORSHIP Bone Marrow Transplant Survivorship Care Plan: Bridging the Knowledge and Care Access Gap: A Pilot Study Wenny Lee, BSN, RN University of Utah, College of Nursing In partial fulfillment of the requirements for the Doctor of Nursing Practice 1 BONE MARROW TRANSPLANT SURVIVORSHIP 2 DNP Scholarly Project Executive Summary In 2006, the Institute of Medicine (IOM), now known as National Academy of Medicine (NAM), recognized that there is a lack of continuation of cancer survivor care in the United States. The IOM recommended that all comprehensive cancer centers address the need of survivor care by using survivorship care plans (SCP) for all patients who have received chemotherapy with curative intent. The SCP is a personalized documentation that includes treatment summaries, potential side effects, complications, late effects of chemotherapy, recommendation for follow up care, secondary cancer screening recommendations, immunization recommendations, and community resources. The purpose of this DNP project is to address care access and knowledge gap of patients and their primary care and/or referring providers with the use of the SCP in patients who have received allogeneic hematopoietic stem cell transplant. The SCP will be integrated into the electronic health record (EHR) system in the local comprehensive cancer center. The objectives and implementation steps for this project are: (1) Develop a bone marrow transplant (BMT) SCP that will be implemented in a comprehensive cancer facility (2) Conduct telephone interviews to gather information to be used to create a formal survey to be used on a larger scale for the SCP (3) Develop and administer formal survey to all patients to identify potential knowledge gap and gain insight on what information should be included in SCP (4) Develop BMT SCP with the use of electronic health record (EHR) (5) Disseminate study findings. Evidenced literature was utilized to evaluate survivorship care and the utilization of SCP in the United States. Pros and cons of existing SCP that have been utilized for other types of cancers were assessed to guide the development of the SCP in this project. Survivorship care plans in other cancers have been found to increase patient and referring/primary care provider's knowledge on treatment received and how to manage lasting effects of cancer treatments. The SCP also empowers patients to allow for greater autonomy. The biggest challenge of implementing SCP is amount of time involved in completing the care plan. There is currently no literature on the use of SCP in the bone marrow transplant (BMT) population. Five patients were selected for a telephone interview to guide the research team in developing a formal survey that was administered to all patients who had received allogeneic hematopoietic stem cell transplant at least one year prior. At the beginning of the project, a total of 76 patients were alive and fit the inclusion criteria of the study. The surveys would assist the research team in modifying the existing SCP that could be individualized and customized. The SCP had been integrated into the EHR system for easy modification per individual's needs. Results of the surveys will be evaluated and utilized in developing programs that will improve BMT patients' quality of life. The committee for this project include Linda Johnson, DNP, AG-ACNP (chair); Julie Balk, DNP, FNP, program director; and Pam Hardin, PhD, RN, assistant dean. The content experts are Catherine Lee, MD, BMT/Hematology assistant professor at Huntsman Cancer Institute; and Daniel Couriel, MD, BMT program director, BMT/Hematology professor at Huntsman Cancer Institute. BONE MARROW TRANSPLANT SURVIVORSHIP 3 Acknowledgements Project Chair Linda Johnson, APRN, AG-ACNP. Thank you for your guidance, encouragement, for being my advocate when I ran into delays, and for keeping me calm when I was stressed. I sincerely appreciate you!!! Content Experts Catherine J. Lee, MD. Thank you for being such a good and down to earth doctor who helps me with this project and for making it possible for me to graduate. I also want to extend my gratitude to you for giving me the support in my last year of school. Without you, I would not have been able to harvest my interest in survivor care. I am so lucky to have met you. Thank you! Daniel Couriel, MD. Thank you for your guidance so this project is a possibility. Additional thanks… I would like to thank the BMT patients whom I called for the interviews and surveys. Those were long interviews and surveys and without their willingness to share their stories, this project could not have continued. I admire their strength and will in their continued effort to power through after such a difficult procedure. I hope this project will bring positive changes in their future care. Last, but not the least… My family. Thank you, Chad, for supporting me and giving me encouragements. Most importantly, for being the housekeeper in the past few years. My children, Brendan and Kristabelle, thank you for being patient when I did not always have time to play with you and thank you for being good kids even during the rough times. My mother and father, thank you for coming often from Taiwan to help with the kids when I could not and for your support in the past few years. My father-in-law and mother-in-law, Mike and Susan, for helping out with the kids when I needed a break. Thank you to the rest of my family, friends, classmates, and professors for their love and support throughout this program. Without you, I couldn't do it. This is for all of you. BONE MARROW TRANSPLANT SURVIVORSHIP Table of Contents Executive Summary…………………………………………………………..……….....2 Problem Statement………………………………………………………………….....…6 Clinical Implications………………………………………………………………..……7 Purpose & Objectives…..………………………………………………………………..8 Review of the Literature..………………….…………………………………………….8 Incorporating SCP in Survivor Care……………………………………….8 Role of SCP in Post-BMT Survivors……………………………………….9 Cancer Survival Statistics…………………………………………………..9 Hematologic Cancer Survival Statistics……….………………………......10 Healthcare Satisfaction with SCP Implementation…………..…………….11 Patient Perspectives……………….……………………………………..…11 Clinician Perspectives………………………………………………………12 Theoretical Framework……………………………………………………….…..12 Implementation of BMT Survivorship Care Plans………………………………13 Table 1. Project Objectives, Implementation and Evaluation Plan……………..15 Evaluation…………………………………………………………….……………..16 Survey Development………..………………………………………………..17 Surveying Post-BMT Patients………………………………………………..17 Results………………………………………………………………………………..18 Outcomes & Recommendations……………………………………………………20 4 BONE MARROW TRANSPLANT SURVIVORSHIP 5 Future Implications…………………………………………………………………….21 Doctor of Nursing Practice Essentials…………………………………………………22 Conclusion………………………………………………………………………………24 References……………………………………………...………………………………..25 Appendices Appendix A: Telephone Interview Questions Scripts …………………………...29 Appendix B: Proposal Defense……………………………………………...…...34 Appendix C: IRB Submission..…………………………………………………..40 Appendix D: Telephone Interview Questions…………………………………....41 Appendix E: Forma Survey Telephone Version………………………………….45 BONE MARROW TRANSPLANT SURVIVORSHIP 6 Bone Marrow Transplant Survivorship Care Plan: Bridging the Knowledge and Care Access Gap: A Pilot Study Problem Statement The Institute of Medicine (IOM), known as National Academy of Medicine (NAM), recommended that all cancer centers address the needs for cancer survivorship in 2006 (Zabora et al, 2015). The recommendation suggested the use of survivor care plans (SCP) and treatment summaries (TS) to improve the health outcomes of cancer survivors. Starting in 2015, cancer centers accredited by American College of Surgeons Commission on Cancer are required to deliver SCPs to all patients who have had chemotherapy with curative intent (Garcia et al., 2016). Cancer SCP provides detailed treatment summaries, surveillance, follow up care needs, long-term effects management, support services, and health maintenance information. The SCPs are often tailored to the patient's individual needs to promote healthy behaviors and selfadvocacy (Garcia et al., 2016). However, less than half of IOM's recommendations were met for TS (M-46%) and less than two thirds for SCPs (M=59%) (Stricker et al., 2011). Cancer survivors often feel scared and isolated after they return to the care of primary care providers (PCP) when their treatments are completed (Denlinger et al. 2014). Primary care providers often have knowledge gap in the treatments received and how to further manage this patient population. The purpose of SCP is to address the knowledge and care access gap. Bone marrow transplant patients are a unique population. The process of bone marrow transplant and the chemotherapy used often has long-lasting effects. However, there has been no BONE MARROW TRANSPLANT SURVIVORSHIP 7 SCP developed for this patient population and the effects of lacking SCP in place is largely unknown. Clinical Significance & Policy Implications The main stakeholders for implementing survivor care plan (SCP) are the survivors/patients, their families, and their other medical providers, specifically the primary care providers (PCP). The lack of support patients perceive after cancer treatments may have adverse effects on their recovery process. The emotional, financial, and physical toll from cancer treatments can be tremendous on cancer survivors and their families. Survivors often report anxiety leaving cancer treatment facilities after treatments are completed (Kenzik et al., 2016). Therefore, it is essential to implement SCP and treatment summary (TS) to allow for selfefficacy. Survivorship care plan also allows for medical providers to understand treatments associated with specific cancers and the long term effects these survivors may experience while recovering, hence, providing the best and the most appropriate follow up care these patients need. Cancer SCPs offer a guide for PCPs to provide the best possible care by guiding providers on follow up plans and health maintenance issues. Survivorship care plans also improve communication between oncologists and PCPs by providing an open communication pathway allowing PCPs to contact oncologists openly. One of the biggest challenges with SCP implementation is the time required for preparing and developing the survivorship care plan. Dulko et al. (2013) stated the average time needed to prepare a SCP is 53.9 minutes (p.6). Utilizing the electronic medical record (EHR) system may shorten the time required to formulate the survivorship care plan. BONE MARROW TRANSPLANT SURVIVORSHIP 8 Lastly, there is currently no established billing code that bills for survivorship care, completion of SCP, and some survivorship care providers cannot bill for services in some states (American Society of Clinical Oncology (ASCO), 2016). However, ASCO (2016) stated that oncologists may bill for total time spent examining and counseling patients and services provided by advance practice providers may be billed and reimbursed. Purpose and Objectives The purpose of this project is to evaluate patient satisfaction of current care received and the satisfaction of SCP post BMT after transitioning patients back to referring providers with the implementation of SCP. Objective 1: Develop and implement a BMT SCP that will be implemented in a comprehensive cancer facility. Objective 2: Conduct telephone interviews to gather information to develop a formal survey to be used on a larger scale for the survivorship care plan. Objective 3: Develop and administer formal survey to all patients who fit inclusion criteria to identify potential knowledge gap and gain insight on what information should be included in SCP. Objective 4: Develop and modify BMT SCP with the use of electronic health record (EHR). Objective 5: Disseminate study findings with poster sessions at local cancer center and submit abstract to Journal of Oncology Practice. Literature Review: Bone Marrow Transplant Survivorship Care Plans Incorporating SCP in Survivor Care Cancer survivors face unique challenges in terms of secondary cancer screening and other disease screening due to late effects of previous cancer treatments. There are other physical and BONE MARROW TRANSPLANT SURVIVORSHIP 9 psychosocial late effects from the cancer that may be debilitating, severe, and potentially permanent (Denlinger et al., 2014). The Institute of Medicine (IOM) released a report in 2006 stating that the current U.S. health care system lacks comprehensive and coordinated follow up care for the cancer survivors (National Academy of Sciences, 2006). The American College of Surgeons Commission on Cancer (CoC) is now requiring all accredited comprehensive cancer institutions to deliver SCPs to patients completing cancer treatments in response to the IOM findings (Garcia et al., 2016). A survivorship care plan is a comprehensive individualized treatment summary that includes guidelines on maintaining and monitoring the survivor's ongoing health (Survivorship care plans, n.d.). It is designed for adult survivors whose cancer is in remission, those whose cancer has become a chronic disease, and for those who are cured (Denlinger et al., 2014). Survivorship care plan provides the framework for care coordination between primary care providers, referring providers, other healthcare providers who contribute to the survivor's health, and the oncologists. Survivorship care plan also provides information on signs of cancer reoccurrence, identifies potential late effects, and recommendations for healthy living (Denlinger et al., 2014). Role of SCP in Post-BMT Survivors There has been no study information in the literatures evaluating the use of SCP in the population of post-BMT hematologic cancer survivors. Survivorship care plan has been implemented in breast cancer, other gynecological cancers, and limited use in colorectal and prostate cancers. Cancer Survival Statistics BONE MARROW TRANSPLANT SURVIVORSHIP 10 An estimated of 1,685,210 new cases of cancer will be diagnosed in the United States in 2016 (National Cancer Institute (NCI), 2016). As medicine advances, the lifespan and the numbers of cancer survivors will increase. American Cancer Society (ACS) (2016) stated that 5year relative survival rate for all cancer types increased from 49% in 1975-1977 to 69% in 20052011. A report released by Center of Disease Control and Prevention (CDC) and ACS estimated that the number of cancer survivors will increase from 3 million to 13.7 million from 1971 to 2012 (Denlinger et al., 2014). The Institute of Medicine estimated that there will be 18 million cancer survivors by 2022 and cancer incidence is expected to rise by 2.3 million new cases per year (National Academy of Sciences, 2013). In 2016, NCI (2016) released a reported stating that cancer survivors reached an astounding number of 14.5 million in 2014 and it is expected to rise to almost 19 million by 2024. Hematologic Cancer Survival Statistics There are three major categories of hematologic cancers including myeloma, lymphoma, and leukemia. Hematologic cancers affect all age groups of the population. The majority of these cancer subtypes, myeloid and lymphoid, are diagnosed above 70 years of age (Smith, Howell, Patmore, Jack, & Roman, 2011). One of the treatments involved with these cancers is bone marrow transplant, hence the need for BMT survivorship care plans. Nearly 20,000 people, between 0-74 years of age, would benefit from BMT each year and in 2014, just under 20,000 people received BMT including autologous and allogeneic (Bone Marrow Transplant General FAQ, n.d.). An estimate of 171,550 people in the United States will be diagnosed with any of these cancers in 2016 (Leukemia & Lymphoma Society, 2016). Survival rate of hematologic cancers are highly dependent on the type of cancer diagnosed. However, the five-year relative survival BONE MARROW TRANSPLANT SURVIVORSHIP 11 rate of these cancers have doubled to quadrupled from 2005 to 2011 (Leukemia & Lymphoma, 2016). The increased survival rate is attributed to advances in treatments in recent years, specifically for leukemia (ACS, 2016). Nicolaije et al (2015) found that SCP amplified patient's concerns, perceived symptoms, emotional impact, and cancer-related contacts with the primary care providers (PCPs). The effects of this finding is yet to be determined. Healthcare Satisfaction with SCP Implementation Patient Perspectives The primary goal of the SCP is to improve health outcomes and healthcare satisfaction of survivors. Most of the current data evaluating patient satisfaction are very limited due to the study design and limited use of SCP in various cancer types. In a comprehensive review of SCP by Mayer, Birken, Check, & Chen (2014), they found that there has been no significant benefit from the SCP on any health outcome, i.e. distress, quality of life, and satisfaction. This finding is consistent at time of care transition and up to 12 months after transition of care. It was found that survivors were satisfied with the SCP itself; SCP was also associated with improved communication between and with providers, improved knowledge of cancer, treatments and follow-up care (Mayer et al., 2014). Most recently, Mayer et al. (2016) conducted a randomized study on delivering SCP to patients coupled with and without scheduled subsequent primary care provider (PCP) follow-up visits. They noted that survivors' confidence in survivorship knowledge improved with the use the survivorship care plan. The delivery of SCP increased worries in survivors, however, the group with scheduled PCP visits had decreased level in worry (Mayer et al., 2016). BONE MARROW TRANSPLANT SURVIVORSHIP 12 In addition, it was noted that high patient satisfaction was associated with receipt of the SCP for patients and caregivers since survivors believed that PCPs lacked the necessary expertise to provide survivorship care (Brant et al., 2016). The receipt of SCP made patients and caregivers less anxious in terms of seeking care from PCP (Brant et al., 2016). Clinician Perspectives Brant et al. (2016) found that PCPs were highly satisfied with the survivorship care plan. In addition, Garcia et al. (2016) discovered that most clinicians shared positive attitudes toward the use of SCP but they were concerned about the burdens associated with survivorship care planning. Most clinicians prefer to incorporate survivorship care planning within the workflow and in favor of using electronic health record (EHR) systems compare to other formats (Garcia et al., 2016). Primary care providers whose patients were provided with SCP were found to be nine times more likely to discuss survivor care issues with the patients than those patients who were not provided with a SCP (Blanch-Hartigan et al., 2014). Blanch-Hartigan et al. (2014) attributed the increase in discussion to improved knowledge of treatments received by patients and providing follow up care and care coordination guidance with the use of survivorship care plan. Bone marrow transplant patients are a unique population within the oncology specialty. Treatments for hematologic cancers are very complex and carry numerous potential toxicity risks. Patients who have had BMT also are much more complicated in their recovery phase and may have more long term care needs. The effects of SCP are yet to be determined in this population. Theoretical Framework: Ottawa Model of Research Use Ottawa Model of Research Use is a comprehensive, interdisciplinary framework that affects the process of knowledge transfer and adopts innovations with social factors taken into BONE MARROW TRANSPLANT SURVIVORSHIP 13 account (Shojania, McDonald, Wachter, & Owens, 2004). The model consists of three phases, assess, monitor, and evaluate. It also contains six elements to identify change needs. The six elements are the practice environment, potential adopters of the evidence, the evidence-based innovation, research transfer strategies, the evidence adoption, and health-related and other outcomes (Logan, & Graham, 1998). First, using the six step approach from the model, the BMT outpatient clinic is identified as the project site, potential barriers, and patient attitudes toward current care are recognized. The BMT SCP is determined to be the innovation to change the practice. Integration of the SCP in the current EHR system with proper provider training lead to decreased knowledge gap and increased care access for BMT survivors. In the assessment phase, evidence-based recommendations are made; suitable practice environment and potential adopters are identified (Shojania, McDonald, Wachter, & Owens, 2004). In 2006, the Institute of Medicine (IOM) recommended that all cancer centers address the needs for cancer survivorship (Zabora et al, 2015). The recommendation fits into the assessment phase of the model. In the monitoring phase, strategies to implement change are recognized and barriers are identified (National Collaborating Centre for Methods and Tools, 2010). Change product is then developed for adoption into practice. In this BMT SCP project, the SCP is the change product that will be implemented in the clinical setting to standardize post BMT survivor care. Lastly, in the evaluation phase of Ottawa Model is evaluation of the innovation. Practitioners and patients will evaluate the effectiveness of the innovation. In this project, patient satisfaction of the SCP will be measured. Implementation and Evaluation of Bone Marrow Transplant Survivorship Care Plans BONE MARROW TRANSPLANT SURVIVORSHIP 14 The purpose of this DNP project is to address the knowledge and care access gap of BMT patients. It also aims to improve follow-up care and long-term surveillance for this population with the use of BMT SCP in an attempt to address the inadequacy of cancer survivorship care in the Mountain West region. This project is to comply with the IOM recommendation that SCPs should be utilized for all cancer survivors. See Table 1 for an outline of the objectives, implementation, and evaluation plan. Currently, a beta version of the SCP is in place, however, the beta version was developed without input from patients and referring providers. The first part of the project involved administering telephone interviews (see appendix I) to five patients to determine patient satisfaction of current care received before and after BMT, identify barriers that may hinder patient care and care access, assess patient knowledge on the BMT procedure, and follow-up care. The information collected provided insight on what should be included in the care plans and would further assist the research team in developing survey questions. During the interviews, the research team identified several keys areas that the formal survey should address further. These areas include financial impacts of the BMT, functional status change and quality of life change before and after BMT, care needed post-transplant, and specific survivor care issues/challenges specific to the BMT population. A written survey is developed with the expertise of the team's bio-statistician and administered to all existing allogeneic transplant survivors that fit the inclusion criteria of this research project. The formal survey allows the research team to modify the existing SCP to address patient and provider needs appropriately. Using the information the research team collected from the five telephone interviews, formal survey is developed by multiple team members. Questions are categorized into various BONE MARROW TRANSPLANT SURVIVORSHIP 15 sections, basic demographic, financial, social, sexual, mental health, physical activity and integrative medicine, late effects, medical, and survivor care issues. These questions consist of Likert scales, yes-no questions, and open-ended questions specific on survivor care issues. Once the formal survey is developed, it will be proof read by the team's biostatistician, then administered via telephone to patients who fit the research's inclusion criteria. Once the SCP is in place, a personalized copy of the SCP will be provided to all new and existing patients who have received allogeneic hematopoietic stem cell transplantation (SCT) at the local cancer center. The team will finally administer a final telephone survey to selected five patients to assess for satisfaction and feasibility of the BMT SCP. Table 1 Project Objectives, Implementation and Evaluation Plan Objective 1. Develop and implement Implementation • BMT SCP that will be implanted in a comprehensive cancer facility. • • 2. Conduct telephone interviews to gather information to develop a formal survey to be used on a larger scale for the SCP. • • Obtain content expert and team members who have vested interest in improving survivorship care for post BMT patients. Survivorship care plan will be implemented in a comprehensive cancer facility. IRB submission. Develop telephone interview questions to be conducted on 5 patients. Data collected from telephone interview will be used to develop formal survey. Evaluation • • • The QI members will be assigned tasks for the project. Content expert present on all aspect of the project. Interview questions developed with the expertise of a survey expert and the content experts. BONE MARROW TRANSPLANT SURVIVORSHIP 3. Develop and administer formal survey to all patients who fit inclusion criteria to identify potential knowledge gap and gain insight on what information should be included in SCP. 4. Develop and modify BMT SCP with the use of electronic health record (EHR) system. • • • • • 5. Disseminate study findings with poster sessions at local cancer center and submit abstract to Journal of Oncology Practice. • • • 16 Develop formal survey utilizing information gathered from telephone interview. Administer formal survey to patients. • Data collected from survey will be analyzed and evaluated by statistician. Build SCP template in the EHR system. Incorporate the SCP in the EHR system and modify the SCP as necessary. Collaborate with IT personnel to develop a special tab for the SCP in the EHR for easy identification. Results will be disseminated by submitting abstract to Journal of Oncology Practice for publishing. Poster sessions at the local cancer center and local hospitals. Presentation will be given at local oncology center. • SCP will be placed in the EHR system. • Project chair, health care providers, content expert, and administrative personnel will be present. Abstract will be submitted to Journal of Oncology Practice. Abstract will be submitted for poster session at local cancer center and local hospital • • Evaluation There had been no recommendation on how to address survivorship care prior to NAM's recommendation. Utilizing the SCP to address the continuing care of hematologic malignancy BONE MARROW TRANSPLANT SURVIVORSHIP 17 survivors after stem cell transplant is the principal goal of this project. The project is based on this goal and the evaluation of the project is by surveying patients who have been through stem cell transplant to assist in future edits on the SCP to fulfill compliance and recommendation of the National Academy of Medicine. Survey Development Open-ended interview questions (see Appendix D) were developed and administered to five patients to assess for appropriate questions that can be used in the formal survey later. The interview questions were divided into multiple sections, basic demographic, medical health, mental health, sexual health, physical activity/integrative medicine, and survivor specific issues. Five patients were selected in this process due to limited numbers of patients at the time of interviews. A total of 76 patients who fit the study criteria were alive at the time. The biostatistician recommended no more than five patients for the interviews to protect the integrity of the study. Surveying Post-BMT Survivors A formal survey was developed, based on interview results, to assess potential barriers to obtain adequate access to post-BMT care and to evaluate potential knowledge deficit and barriers in post-transplant care. Additionally, the survey also assessed patients' post-transplant quality of life (QoL) to determine whether QoL may be affected by adequate care access. QoL was evaluated using validated instruments, such as PHQ-9, FACT-BMT, SF-36, Lee chronic graft vs host disease (GVHD) Symptom Scale, and FSI. All validated instrument usage was approved by original developers as necessary and/or given credit for use. An IRB was submitted and submission document is provided in Appendix C. The finalized survey is included in Appendix D. BONE MARROW TRANSPLANT SURVIVORSHIP 18 Results To fulfill the first objective, the content expert, Dr. Catherine J. Lee, at a local cancer center developed a beta version of a survivorship care plan for the BMT patients due to NAM's recommendation and the CoC requirement. The beta version contains information that the medical providers believe BMT patients should know regardless of patients' perspectives on what need to be included. The project aims to identify specific survivorship related issues that need to be addressed and incorporate the information identified in the survivorship care plan. This project has the full support of the BMT department at this local cancer center. During the planning phase of the research project, an inter-disciplinary approach was used to gain various perspectives from each discipline on how best to address knowledge and care access gaps in the BMT population. Team members consist of BMT providers, social worker, DNP student/clinical nurse, and a biostatistician. Study inclusion criteria was also determined and listed as follows: 1. Male or female patient 18 years or older at the time of transplant. 2. Any diagnosis warranting allogeneic hematopoietic cell transplantation 3. Received allogeneic hematopoietic cell transplantation between January 1, 2013 to April 1, 2016 at the Huntsman Cancer Center 4. Alive for a minimum of 1 year following their transplant 5. Alive at the time of sampling 6. Patients must be able to speak and comprehend English The research team then developed open-ended interview questions to inquire patients of their experiences of the bone marrow transplant, specifically identifying any lifestyle changes that may be attributed to the transplant experience. The interview questions also emphasized on BONE MARROW TRANSPLANT SURVIVORSHIP 19 what information patients think may be helpful and useful to receive prior and after the transplant in addition to identifying potential barriers that may hinder their abilities to obtain follow up care. In the initial phone interview phase of the research, only 76 patients fit the inclusion criteria. The research team consulted with the biostatistician to determine that no more than five patients can be contacted to conduct telephone interviews to protect the integrity of the research study. These five patients were selected by the BMT care team and they were determined to be the most responsive patients at the time to share diverse experiences. Three of those patients were males and two were females. The two female patients coincidentally were both nurses who live in very rural settings. One of the male patients lived in rural settings and the other two lived in urban settings. The interviews took one to one and a half hours to complete and the interviews were consented and recorded. Monetary compensation was provided to these five patients from the research fund. After completion of the phone interviews, information was used to help develop a formal survey. The research team identified questions that needed further investigation and developed questions specific to those areas. The areas that needed further clarification and investigations include GVHD symptoms, follow up care, and financial concerns. During the development phase of the survey, the research team decided to further evaluate quality of life issues to allow for extension of this study in the future. Currently, the survey is approximately 30 pages long and contains three main sections for QoL questions, survivorship experiences, and demographic information. Initially, the research team intended to conduct the formal survey via telephone. Four patients were contacted to conduct test surveys and only three responded to the request to BONE MARROW TRANSPLANT SURVIVORSHIP 20 schedule a separate time to complete the survey. However, due to the time it required and the length of the survey, only two patients completed the survey. Upon completion of the test surveys, the research team decided to change the method of survey administration to paper format to mail to all the remainder patients who fit the inclusion criteria, currently, 115 of them, due to complexity of completing phone surveys. The formal survey is presently undergoing further modification to ensure formatting of the survey is easy for patients to do on paper. After the survey has completed the modification process, they will be mailed to patients. The research team members will contact patients via phone after they receive the paper survey to offer assistance for survey completion, if needed, since some patients with GVHD may experience eye symptoms that affect vision. Due to the delay in survey administration, objective four of modifying the SCP cannot be fulfilled currently. However, participation in this study will continue beyond completion of the DNP program. The first abstract will be submitted by the end of this year from the survey findings. Outcomes and Recommendations This DNP project has opened up more opportunities for future QI projects related to survivorship care plans within the local cancer center. Since this project has not been completed, continued effort is needed to eventually modify the SCP according to completed survey data. In addition, there are many cancers for which the SCP still need to be created in this institution. Preliminary results from the telephone interviews and test surveys suggest that quality of life in the BMT population is moderately to severely affected after transplant due to treatment related long term effects. All five patients interviewed identified decreased stamina and increased BONE MARROW TRANSPLANT SURVIVORSHIP 21 fatigue has affected their quality of life post-transplant. Future studies on how to improve QoL issues in the BMT population is in needed. Furthermore, all five patients interviewed desire peer-to-peer mentoring program to help them understand the day-to-day challenges they may be faced with post-transplant. They also would like someone who has gone through the bone marrow transplant experience to prepare them for the life-altering experiences. Moreover, patient navigation program to help these patients navigate within the complicated healthcare system while going through a highly complex procedure, such as the bone marrow transplant, is another area that may be beneficial for the BMT population. Wells et al (2008) stated that having a patient navigation program increases the patients' adherence to follow-up care by 21%-29.2%. In the BMT population, follow-up care is very important since these patients are high risk of developing second cancers, GVHD, and other long term effects. Lastly, incorporating telemedicine for patients living in rural communities can potentially decrease financial burden that are associated with follow-up care after bone marrow transplant. In addition, BMT patients tend to have lower immunity and being present in crowded clinic settings may adversely hinder their recovery. More research also needs to be conducted to investigate whether the use of telemedicine for some follow-up care may decrease potential infection risks. However, the logistics of utilizing telemedicine is a challenge that needs to be resolved. Future Implications Looking ahead, the research team will use the data collected from the paper surveys to modify the existing SCP to reflect a well-designed SCP incorporating patients' input. Currently, the SCP is written from medical providers' perspectives assuming what may be important for BONE MARROW TRANSPLANT SURVIVORSHIP 22 BMT patients. The research team's hope is to improve the SCP to contain more relevant and useful information from the patients' perspectives. Nevertheless, this research project has yet to address primary care provider and referring providers' perspectives. A future arm from this project will be extended to assess other providers' viewpoints on the survivorship care plan and how it can be utilized more effectively and efficiently. Provider satisfaction of the SCP will also be assessed in the future arm. Lastly, as cancer incidences increase, hematologic malignancy incidences are also expected to rise. The number of patients who need allogeneic transplants due to hematologic malignancies will subsequently increase and with advancing treatments, patients are expected to live longer. The unique challenges of BMT survivors face will need to be addressed by having trained and qualified providers who are well-versed in BMT survivor care. The personalized SCP will guide primary care providers and referring providers on how to provide adequate follow-up care to these patients. In addition, a BMT nurse practitioner-led survivorship clinic can also provide quality long term follow-up care for this unique patient population. The possibilities on how to address BMT survivor care is endless in this developing field. DNP Essentials Essential I: Scientific Underpinning for Practice This project addresses BMT cancer survivor care by utilizing nursing science and theory. The intent is to improve care for the BMT population and to improve care delivery by addressing care coordination between BMT providers and patients' primary care/referring providers. The project also attempts to bridge knowledge gap of the patients and referring providers by offering complete information on treatment effects and subsequent care recommendations, which ultimately integrates this patient population back into their original social circles. BONE MARROW TRANSPLANT SURVIVORSHIP 23 Essential II: Organizational and Systems Leadership for Quality Improvement and Systems Thinking The BMT SCP project fulfills the DNP essential of quality improvement. It is identified that survivor care in this group of population is lacking. No official guidance on follow up care and surveillance has been offered to post BMT patients after the first 100 days from literature reviews. This is a population of patients who will benefit from having SCP guiding their follow up care. Essential IV: Information Systems/Technology and Patient Care Technology for the Improvement and Transformation of Health Care & VI: Inter-professional Collaboration for Improving Patient and Population Health Outcomes This project involved heavy inter-professional collaboration. The research team consists of multiple professionals from various inter-disciplinary personnel, biostatistician, physicians, nurse/nurse practitioner student, and social worker. Each inter-disciplinary member developed survey questions that are within their scope of practice to allow for maximal utilization of each member's knowledge and expertise. In addition, collaboration with information technology (IT) department was also necessary to implement the survivorship care plan in the EHR system. Essential VIII: Advanced Nursing Practice A comprehensive and detailed care plan is developed for the BMT survivors. The plan of care for long-term follow up in the SCP provides a holistic approach to living a healthy life after bone marrow transplant. Community resources along with wellness center resources are also included in the long term follow up plan to ensure that patients would maximize quality of life. In addition, the care plan offers guidance for other healthcare providers to provide optimal care for these patients according to evidence-based guidelines. BONE MARROW TRANSPLANT SURVIVORSHIP 24 Conclusion This DNP project is to address the gap in cancer survivor care since the publication of "From Cancer Patient to Cancer Survivor: Lost in Transition" by the Institute of Medicine a.k.a. National Academy of Medicine (2006). This project also fulfills CoC's requirement of addressing cancer survivor care by implementation of survivorship care plan. In the recent years, survivorship care has become a field of medicine where extensive research has been conducted. Nurse practitioners can play an instrumental role in expanding survivorship care and participate in continued effort to conduct further research in improving cancer survivor experiences. The purpose of this research project had the goal of modifying the existing beta version of the SCP. However, due to the nature of this pilot study and the potential for developing future arms from this study, the research team also aimed to collect data to further evaluate QoL measures. The end goal of modifying the SCP has yet to be reached. Nevertheless, the existing information the research team has collected so far has shed glimpse of light on the everyday struggles of post-transplant patients. The overarching goal of this research project is to improve survivor care for future patients and to bridge care access and knowledge gap for this unique patient population. BONE MARROW TRANSPLANT SURVIVORSHIP 25 References Brant, J. M., Blaseg, K., Aders, K., Oliver, D., Gray, E., & Dudley, W. N. (2016, November). Navigating the Transition From Cancer Care to Primary Care: Assistance of a Survivorship Care Plan. Oncology Nursing Form, 43(6), 710-719. doi:10.1188/16.ONF.710-719 Bone Marrow Transplant General FAQ. (n.d.). Retrieved August 22, 2016, from http://bloodcell.transplant.hrsa.gov/about/general_faqs/index.html Cancer Facts & Figures. (2016). American Cancer Society. Retrieved on July 30, 2016, from http://www.cancer.org/acs/groups/content/@research/documents/document/acspc047079.pdf Cancer Statistics. (2016). National Cancer Institute. Retrieved on July 30, 2016, from http://www.cancer.gov/about-cancer/understanding/statistics Coverage & Reimbursement for Survivorship Care Services. (2016). American Society of Clinical Oncology. Retrieved on July 28, 2016, from https://www.asco.org/practiceguidelines/cancer-care-initiatives/prevention-survivorship/survivorship/survivorship-8 Blanch-Hartigan, D., Forsythe, L. P., Alfano, C. M., Smith, T., Nekhlyudov, L., Ganz, P. A., & Rowland, J. H. (2014). Provision and discussion of survivorship care plans among cancer survivors: results of a nationally representative survey of oncologists and primary care physicians. Journal of Clinical Oncology, 32(15), 1578-1585 1578p. doi:10.1200/JCO.2013.51.7540 Denlinger, C. S., Carlson, R. W., Are, M., Baker, K. S., Davis, E., Edge, S. B., . . . FreedmanCass, D. (2014). Survivorship: Introduction and definition. Clinical practice guidelines in oncology. J Natl Compr Canc Netw, 12(1), 34-45. BONE MARROW TRANSPLANT SURVIVORSHIP 26 Dulko, D., Pace, C. M., Dittus, K. L., Sprague, B. L., Pollack, L. A., Hawkins, N. A., & Geller, B. M. (2013). Barriers and Facilitators to Implementing Cancer Survivorship Care Plans.Oncology Nursing Forum, 40(6), 575-580 576p. doi:10.1188/13.ONF.575-580 Facts and Statistics. (2016). Leukemia & Lymphoma Society. Retrieved July 21, 2016, from https://www.lls.org/http:/llsorg.prod.acquia-sites.com/facts-and-statistics/facts-andstatistics-overview/facts-and-statistics Garcia, S. F., Kircher, S. M., Oden, M., Veneruso, A., McKoy, J. M., Pearman, T., & Penedo, F. J. (2016). Survivorship care planning in a comprehensive cancer center using an implementation framework. J Community Support Oncol, 14(5), 192-199. doi:10.12788/jcso.0255 Kenzik, K. M., Kvale, E. A., Rocque, G. B., Demark-Wahnefried, W., Martin, M. Y., Jackson, B. E., . . . Pisu, M. (2016). Treatment Summaries and Follow-Up Care Instructions for Cancer Survivors: Improving Survivor Self-Efficacy and Health Care Utilization. The Oncologist, 21, 1-9. doi:10.1634/theoncologist.2015-0517 Logan, J., & Graham, I. D. (1998). Toward a Comprehensive Interdisciplinary Model of Health Care Research Use. Science Communication, 20(2), 227-246. Doi: 10.1177/1075547098020002004 Mayer, D. K., Birken, S. A., Check, D. K., & Chen, R. C. (2014, April 01). Summing it up: An integrative review of studies of cancer survivorship care plans (2006-2013). Cancer, 121(7), 978-996. doi:10.1002/cncr.28884 Mayer, D., Deal, A., Crane, J., Chen, R., Asher, G., Hanson, L., . . . Rosenstein, D. (2016). Using Survivorship Care Plans to Enhance Communication and Cancer Care Coordination: BONE MARROW TRANSPLANT SURVIVORSHIP 27 Results of a Pilot Study. Oncology Nursing Forum, 43(5), 636-645. doi:10.1188/16.onf.636-645 National Academy of Sciences. (2006). From cancer patient to cancer survivor: Lost in translation. Washington, D.C: The National Academies Press. Retrieved from http://georgiacore.org/articleImages/articlePDF_396.pdf National Collaborating Centre for Methods and Tools (2010). Ottawa Model of Research Use: A Framework for Adopting Innovations. Hamilton, ON: McMaster University. (Updated 30 August, 2010) Retrieved from http://www.nccmt.ca/resources/search/65. Nicolaije, K. A., Ezendam, N. P., Vos, M. C., Pijnenborg, J. M., Boll, D., Boss, E. A., . . . PollFranse, L. V. (2015). Impact of an Automatically Generated Cancer Survivorship Care Plan on Patient-Reported Outcomes in Routine Clinical Practice: Longitudinal Outcomes of a Pragmatic, Cluster Randomized Trial.Journal of Clinical Oncology, 33(31), 35503559. doi:10.1200/jco.2014.60.3399 Shojania, K.G., McDonald, K.M., Wachter, R.M., & Owens, D.K. (2004). Closing the Quality Gap: A Critical Analysis of Quality Improvement Strategies (290-02-0017). Rockville, MD: Agency for Healthcare Research and Quality. Retrieved from http://www.ncbi.nlm.nih.gov/books/NBK43908/pdf/Bookshelf_NBK43908.pdf Smith, A., Howell, D., Patmore, R., Jack, A., & Roman, E. (2011). Incidence of haematological malignancy by sub-type: a report from the Haematological Malignancy Research Network. British Journal of Cancer, 105(11), 1684-1692. http://doi.org/10.1038/bjc.2011.450 Stricker, C. T., Jacobs, L. A., Risendal, B., Jones, A., Panzer, S., Ganz, P. A., . . . Palmer, S. C. (2011). Survivorship care planning after the Institute of Medicine recommendations: How BONE MARROW TRANSPLANT SURVIVORSHIP 28 are we faring? Journal of Cancer Survivorship J Cancer Surviv, 5(4), 358-370. doi:10.1007/s11764-011-0196-4 Wells, K. J., Battaglia, T. A., Dudley, D. J., Garcia, R., Greene, A., Calhoun, E., …Raich, P (2008). Patient Navigation: State of the Art, or Is It Science? Cancer, 113(8), 1999-2010. http://doi.org/10.1002/cncr.23815 Zabora, J. R., Bolte, S., Brethwaite, D., Weller, S., & Friedman, C. (2015, February). The Challenges of the Integration of Cancer Survivorship Care Plans with Electronic Medical Records. Seminars in Oncology Nursing, 31(1), 73-78. doi:10.1016/j.soncn.2014.12.001 BONE MARROW TRANSPLANT SURVIVORSHIP 29 Appendix A: Telephone Interview Questions and Scripts Date: □ Consent completed □ Recorder turned on My name is Wenny Lee. I'm a nurse working in Huntsman Cancer Hospital BMT clinic. We're conducting a research study to find out about patient's BMT experiences and challenges patients face to improve the process. This study is overseen by Dr. Catherine Lee at the BMT clinic. First of all, I'd like to thank you for participating in this interview on behalf of our research team. The information from this interview will help our research team learn about patient's experiences with BMT and how to improve this experience, in turn, will benefit your future care needs. The information collected will assist us in developing a survivorship care plan (SCP) for patients who have gone through bone marrow transplant. As you know, the BMT procedure is very complex and many of the chemotherapy agents used in BMT may produce undesirable side effects/complications that may last a long time. The SCP will include treatment summaries, potential side effects and what can be done for them, recommendation for follow up care, secondary cancer screening recommendations, immunizations recommendations, and community resources. The purpose of the SCP is to provide patients with helpful information about their treatment and possible side effects and guide patients and their physicians in determining how to best handle the patients' ongoing and future health care needs. This interview will help us understand what information we need to include in the SCP to maximize the benefits of its use. BONE MARROW TRANSPLANT SURVIVORSHIP 30 Before we get started on the interview, I want to thank you for taking time to talk with me today. Please know that we only ask you to share what you are comfortable discussing. To thank you for your participation, you will be given a $20 gift card at the end of the interview. Do you have any questions before we begin? Do you give us permission to conduct this telephone survey? Basic Demographic Info First of all, I'd like to find out some basic demographic information. 1. Have you moved since your BMT? a. Type of dwelling b. Rural to urban and vice versa? 2. Has your job/occupation changed since BMT? Yes, not working What was the reason for the change? a. Employment status 3. Have you had change in your social support? a. Has anyone in your household moved away? If yes, is the reason related to your treatments? b. Have you had change in your social circle, e.g. friends? 4. Marital status change? 5. Have you had change in religious beliefs? If yes, why? 6. Have you had changes to your financial status? a. Did you have to use up your savings? Tapping into retirement funds prematurely? Medical Health 1. Do you have a primary care provider or a specific provider that you routinely follow up you're your post BMT related needs? a. How often do you follow up with your provider? b. How frequently would you prefer to follow up with your provider? c. Provider knowledge 2. Do you feel confident that your current provider is knowledgeable of your post-transplant care? 3. Have you been diagnosed with any new cx since the BMT? (brief review of hx at time of BMT) a. Do you think this is related to your BMT procedure? BONE MARROW TRANSPLANT SURVIVORSHIP 31 4. Are you getting secondary cancer screening? a. Mammogram, prostate exam, colonoscopy, skin cancer screening, pap smear, etc. 5. Have you experienced relapse or secondary cancers? a. Skin cancer, colon cancers, other blood cancers, gynecologic cancers, etc. 6. Have you started or stopped any substance use? a. What substance stopped or started? 7. Has your current provider re-vaccinated you? a. Are you up to date on your vaccines? GVHD patients: 1. What kind of complications have you experienced with GVHD? 2. Has GVHD complicated or hindered your treatments with other chronic conditions? Mental Health Briefly review medical status at time of BMT. 1. Since BMT, have you been diagnosed with depression, anxiety, PTSD, etc. since the BMT procedure? a. Are you taking any medication for any of the conditions? b. Are you in counselling or therapy? c. Is your condition well-controlled? 2. Have you experienced any memory loss, delayed verbal response, or trouble with communication since BMT? 3. Have you experienced low self-esteem since your BMT procedure? a. Do you feel more self-conscious? GVHD patients: 1. How has GVHD affected your mental well-being? Sexual Health 1. What is your sexual orientation? Are you sexual active? a. (If female) Was fertility an issue for you post-transplant? 2. Are you satisfied with your sexual health? yes a. Using any supplement or performance enhancing drugs? b. How would you compare your current sexual relationships now to prior to BMT? c. Do you have sx that hinders your sexual relationships, e.g. dyspareunia, erectile dysfunction, decreased libido, impotence? d. What kind of follow up care are you receiving with your sx? e. Do you feel comfortable discussing your sexual sx with your provider? BONE MARROW TRANSPLANT SURVIVORSHIP 32 f. Self esteem 3. How has your relationship changed since the BMT? a. Are you in marriage or couple counselling? b. Has the transplant change your own body image? c. Have you experienced any change in sexual self-esteem? Physical Activities/Supplements/Integrative Medicine 1. Have you noticed any change in how you tolerate various daily activities that you had no trouble with prior to BMT? 2. Have you started or stopped your exercise regimen since BMT? a. What activities did you and are you doing? How often? How many minutes each session? 3. Have you had changes in diet since BMT? a. Any taste or smell change? b. Weight gain or weight loss? c. Have you made any changes to your dietary intake? E.g. fruits/vegetable/meats? 4. Have you utilized any integrative medicine therapy, e.g. acupuncture, cupping? a. Do you have a different view on integrative medicine since BMT? 5. Have you started or stopped taking supplements? GVHD patients: 1. Are you using any integrative medicine therapy specific to GVHD? Has it been helpful? If so, how? Review of System 1. Do you feel you are having any long term side effects from transplant? IF yes, describe. Survivor Issues 1. Taken into consideration of your quality of life now, if you are given BMT as a treatment option in the future, would you do it again? 2. What information or education would you prefer to have received regarding post BMT care? a. How do you think your BMT providers can facilitate transition better? 3. Would you have wanted to learn more about the after effects of BMT? 4. What do you wish could have been different during your BMT experience? 5. In what areas can we improve as BMT providers to facilitate post BMT care? 6. Given the purpose of the SCP providing information on treatment summaries, potential side effects, recommendation for follow up care, secondary cancer screening BONE MARROW TRANSPLANT SURVIVORSHIP 33 recommendations, immunizations recommendations, and community resources. Do you feel like it will improve post BMT care? 7. What kind of barriers/difficulties do you foresee with a SCP, if there's any? 8. Do you think where you live impact quality of care you receive? a. What are challenges related to receiving quality care? b. What resources would you need? 9. How often do you follow up with your BMT providers? 10. What do you think about telemedicine? Thank you for your participation. BONE MARROW TRANSPLANT SURVIVORSHIP Appendix B: Proposal Defense 34 BONE MARROW TRANSPLANT SURVIVORSHIP 35 BONE MARROW TRANSPLANT SURVIVORSHIP 36 BONE MARROW TRANSPLANT SURVIVORSHIP 37 BONE MARROW TRANSPLANT SURVIVORSHIP 38 BONE MARROW TRANSPLANT SURVIVORSHIP 39 BONE MARROW TRANSPLANT SURVIVORSHIP Appendix C: IRB Submission 40 BONE MARROW TRANSPLANT SURVIVORSHIP 41 Appendix D: Telephone Interview Questions Bone Marrow Transplant Survivorship Care Plan Interview Scripts/Questions Date: □ Consent completed □ Recorder turned on MY name is Wenny Lee. I'm a nurse working in Huntsman Cancer Hospital BMT clinic. We're conducting a research study to find out about patient's BMT experiences and challenges patients face to improve the process. This study is overseen by Dr. Catherine Lee at the BMT clinic. First of all, I'd like to thank you for participating in this interview on behalf of our research team. The information from this interview will help our research team learn about patient's experiences with BMT and how to improve this experience, in turn, will benefit your future care needs. The information collected will assist us in developing a survivorship care plan (SCP) for patients who have gone through bone marrow transplant. As you know, the BMT procedure is very complex and many of the chemotherapy agents used in BMT may produce undesirable side effects/complications that may last a long time. The SCP will include treatment summaries, potential side effects and what can be done for them, recommendation for follow up care, secondary cancer screening recommendations, immunizations recommendations, and community resources. The purpose of the SCP is to provide patients with helpful information about their treatment and possible side effects and guide patients and their physicians in determining how to best handle the patients' ongoing and future health care needs. This interview will help us understand what information we need to include in the SCP to maximize the benefits of its use. BONE MARROW TRANSPLANT SURVIVORSHIP 42 Before we get started on the interview, I want to thank you for taking time to talk with me today. Please know that we only ask you to share what you are comfortable discussing. To thank you for your participation, you will be given a $25 gift card at the end of the interview. Do you have any questions before we begin? Do you give us permission to conduct this telephone survey? Basic Demographic Info First of all, I'd like to find out some basic demographic information. 7. Have you moved since your BMT? a. Type of dwelling b. Rural to urban and vice versa? 8. Has your job/occupation changed since BMT? Yes, not working What was the reason for the change? a. Employment status 9. Have you had change in your social support? a. Has anyone in your household moved away? If yes, is the reason related to your treatments? b. Have you had change in your social circle, e.g. friends? 10. Marital status change? 11. Have you had change in religious beliefs? If yes, why? 12. Have you had changes to your financial status? a. Did you have to use up your savings? Tapping into retirement funds prematurely? Medical Health 8. Do you have a primary care provider or a specific provider that you routinely follow up you're your post bmt related needs? a. How often do you follow up with your provider? b. How frequently would you prefer to follow up with your provider? c. Provider knowledge 9. Do you feel confident that your current provider is knowledgeable of your post-transplant care? 10. Have you been diagnosed with any new cx since the BMT? (brief review of hx at time of BMT) a. Do you think this is related to your bmt procedure? BONE MARROW TRANSPLANT SURVIVORSHIP 43 11. Are you getting secondary cancer screening? a. Myelodysplasia (MDS) and acute myeloid leukemia (AML); B-cell posttransplant lymphoproliferative disorders (BCLD) and solid tumors (ST). 12. Have you experienced relapse or secondary cancers? 13. Have you started or stopped any substance use? a. What substance stopped or started? 14. Has your current provider re-vaccinated you? a. Are you up to date on your vaccines? GVHD patients: 3. What kind of complications have you experienced with GVHD? 4. Has GVHD complicated or hindered your treatments with other chronic conditions? Mental Health Briefly review medical status at time of BMT. 4. Since BMT, have you been diagnosed with depression, anxiety, PTSD, etc. since the BMT procedure? a. Are you taking any medication for any of the conditions? b. Are you in counselling or therapy? c. Is your condition well-controlled? 5. Have you experienced any memory loss, delayed verbal response, or trouble with communication since BMT? 6. Have you experienced low self-esteem since your BMT procedure? a. Do you feel more self-conscious? GVHD patients: 2. How has GVHD affected your mental well-being? Sexual Health 4. What is your sexual orientation? Are you sexual active? a. (If female) Was fertility an issue for you post transplant? 5. Are you satisfied with your sexual health? yes a. Using any supplement or performance enhancing drugs? b. How would you compare your current sexual relationships now to prior to BMT? c. Do you have sx that hinders your sexual relationships, e.g. dyspareunia, erectile dysfunction, decreased libido, impotence? d. What kind of follow up care are you receiving with your sx? e. Do you feel comfortable discussing your sexual sx with your provider? BONE MARROW TRANSPLANT SURVIVORSHIP 44 f. Self esteem 6. How has your relationship changed since the BMT? a. Are you in marriage or couple counselling? b. Has the transplant change your own body image? c. Have you experienced any change in sexual self-esteem? Physical Activities/Supplements/Integrative Medicine 6. Have you noticed any change in how you tolerate various daily activities that you had no trouble with prior to BMT? 7. Have you started or stopped your exercise regimen since BMT? a. What activities did you and are you doing? How often? How many minutes each session? 8. Have you had changes in diet since BMT? a. Any taste or smell change? b. Weight gain or weight loss? c. Have you made any changes to your dietary intake? E.g. fruits/vegetable/meats? 9. Have you utilized any integrative medicine therapy, e.g. acupuncture, cupping? a. Do you have a different view on integrative medicine since BMT? 10. Have you started or stopped taking supplements? GVHD patients: 2. Are you using any integrative medicine therapy specific to GVHD? Has it been helpful? If so, how? Review of System 2. Do you feel you are having any long term side effects from transplant? IF yes, describe. Survivor Issues 11. Taken into consideration of your quality of life now, if you are given BMT as a treatment option in the future, would you do it again? 12. What information or education would you prefer to have received regarding post BMT care? a. How do you think your BMT providers can facilitate transition better? 13. Would you have wanted to learn more about the after effects of BMT? 14. What do you wish could have been different during your BMT experience? 15. In what areas can we improve as BMT providers to facilitate post BMT care? 16. Given the purpose of the SCP providing information on treatment summaries, potential side effects, recommendation for follow up care, secondary cancer screening BONE MARROW TRANSPLANT SURVIVORSHIP 45 recommendations, immunizations recommendations, and community resources. Do you feel like it will improve post BMT care? 17. What kind of barriers/difficulties do you foresee with a SCP, if there's any? 18. Do you think where you live impact quality of care you receive? a. What are challenges related to receiving quality care? b. What resources would you need? 19. How often do you follow up with your BMT providers? 20. What do you think about telemedicine? Thank you for your participation. Patient's address (for gift card distribution): BONE MARROW TRANSPLANT SURVIVORSHIP 46 Appendix E: Forma Survey Telephone Version Consent: My name is Wenny Lee. I'm a nurse working in Huntsman Cancer Hospital Bone Marrow Transplant clinic, otherwise known as the BMT clinic. I am calling on behalf of Dr. Catherine Lee, one of the BMT physicians at Huntsman Cancer Center. We are conducting a research study to assess quality of life and the post-transplant experience among our BMT survivors so that we can improve the experience for future patients who receive a transplant. Dr. Lee is the principle investigator and is overseeing this project. The complete survey is divided in 3 sections. The first section includes 2-3 sets of questions that will ask about your current quality of life. The second section will include questions related to your survivorship experience after transplant. Lastly, the third section will be related to demographic information. We expect it will take about one hour to complete the survey. There is no direct medical benefit for participating to you at this time, but our hope is that we can significantly improve the post-transplant experience for future patients who receive their transplant at the Huntsman Cancer Center. Before we get started on the survey, I want to thank you for taking time to complete this survey with me today. To thank you for your participation, you will be given a $25 gift card at the end of the interview. Do you have any questions before we begin? Do you give us permission to conduct this telephone survey? If yes, please listen to each question carefully and only select choices provided unless specified otherwise. I. Health Related Quality of Life BONE MARROW TRANSPLANT SURVIVORSHIP 47 BONE MARROW TRANSPLANT SURVIVORSHIP 48 BONE MARROW TRANSPLANT SURVIVORSHIP 49 BONE MARROW TRANSPLANT SURVIVORSHIP 50 BONE MARROW TRANSPLANT SURVIVORSHIP 51 BONE MARROW TRANSPLANT SURVIVORSHIP 52 BONE MARROW TRANSPLANT SURVIVORSHIP 53 BONE MARROW TRANSPLANT SURVIVORSHIP 54 BONE MARROW TRANSPLANT SURVIVORSHIP 55 BONE MARROW TRANSPLANT SURVIVORSHIP 56 II. Survivorship Experience Medical/GVHD 1. First, I'm going to read a list of medical conditions. I'd like to know if you've been diagnosed with any of these medical conditions following your transplant. Please tell me yes or no for each. Yes/No/Not sure (Don't read this option but have it available if they say it.) a. Have you been diagnosed with Avascular necrosis (death of bone tissue)? b. Cataracts c. Cognitive Decline (slowness, memory loss) d. Congestive heart failure (EF < 40%) e. Chronic pancreatitis f. Chronic kidney injury g. Diabetes h. Gonadal dysfunction/infertility i. Hypothyroidism or other thyroid problems j. Heart attack k. Iron overload l. Liver Disease m. Lung disease n. Osteopenia/Osteoporosis o. Recurrent respiratory tract infection p. Stroke/TIA/seizure q. Others, please list: _________________________ r. None 2. I'd like to know if you've been diagnosed with any of the following cancers since your transplant. Please tell me yes or no for each. a. Myelodysplastic syndrome/Acute myeloid leukemia b. Acute lymphoblastic leukemia c. Multiple myeloma d. Non-Hodgkin's lymphoma e. Hodgkin's Lymphoma f. Central nervous system malignancy g. Skin cancer: squamous, basal or melanoma h. Other cancers, please specify: ____________________ i. None 3. Have you experienced recurrent infections requiring hospitalization following your transplant? o Yes o No Chronic Graft versus host disease 1. Have you ever been diagnosed with chronic graft versus host disease, otherwise called GVHD? BONE MARROW TRANSPLANT SURVIVORSHIP 2. 3. 4. 5. 6. 57 o Yes o No (skip Lee cGVHD symptom burden scale and go to Provider Questions Section) o I don't know Who primarily monitored or treated your GVHD? o BMT doctor-this is the doctor who did your bone marrow transplant o Oncologist- this is your cancer doctor o Primary Care Provider, such as family medicine/internal medicine provider How would you rate your main provider's management of your GHVD? Would you say it has been: o Excellent o Very good o Good o Fair o Poor Were you treated with steroids for more than 3 months? o Yes, continue to Q5. o No, skip to cGVHD Sx scale o Don't remember/don't know, skip to cGVHD Sx scale If you were treated with steroids for more than 3 months, did you receive routine yearly screening for osteoporosis with a DEXA scan? (this is an XRAY that takes pictures of your bones) o Yes o No o Not sure If you were treated with steroids for more than 3 months, did you receive a medication to help strengthen your bones? (such as a bisphosphonate, e.g. Fosamax, Aredia, or Zometa) o Yes o No o Not sure 7. Did any of your doctors start daily calcium and vitamin D pill for you? o Yes o No o Not sure BONE MARROW TRANSPLANT SURVIVORSHIP 58 BONE MARROW TRANSPLANT SURVIVORSHIP 59 BONE MARROW TRANSPLANT SURVIVORSHIP 60 Provider Questions 1. Who manages your medical care as related to your transplant? a. PCP, continue to Q2-5 b. Oncologist, continue to Q2-5 c. BMT provider, go straight to Q6 d. Other, please specify: _________________, continue to Q2-5 2. About how often do you see this doctor? o Every 1-2 months o About once every 3-6 months o About once every 7-11 months o About Once a year o Less than once a year 3. How far away is this doctor's office from where you live? o Less than 5 miles o Between 5 and 10 miles o Between 11 and 20 miles o Between 21 and 50 miles o Between 51 and 100 miles o More than 100 miles away 4. On a scale of 1-5, how confident do you feel that this physician is capable of taking care of your transplant- related healthcare needs? o Not at all confident (1) o Not very confident (2) o Somewhat confident (3) o Mostly confident (4) o Completely confident (5) 5. As this person is not your BMT doctor, how often do you see your BMT doctor? o Every 1-2 months o About once every 3-6 months o About once every 7-11 months o About Once a year o Less than once a year 6. What is the distance to your BMT provider? (ask everyone) o Less than 5 miles o Between 5 and 10 miles o Between 11 and 20 miles o Between 21 and 50 miles o Between 51 and 100 miles o More than 100 miles away 7. How close is the nearest emergency facility (for example ER or urgent care) to you? o Less than 5 miles o Between 5 and 10 miles o Between 11 and 20 miles o Between 21 and 50 miles o Between 51 and 100 miles BONE MARROW TRANSPLANT SURVIVORSHIP o More than 100 miles away 8. Who is responsible for making sure that you take all of the medications that are prescribed to you? o You manage them yourself, go to Q9 o A Family member (skip Q9) o Another caretaker (Skip Q9) 9. On a scale of 1-5, how confident are you that you're taking the medications as prescribed? o Not at all confident (1) o Not very confident (2) o Somewhat confident (3) o Mostly confident (4) o Completely confident (5) 61 BONE MARROW TRANSPLANT SURVIVORSHIP Mental Health 62 BONE MARROW TRANSPLANT SURVIVORSHIP 63 Do you believe the fatigue you just described in the prior questions is related to your history of cancer and its treatment, including BMT. BONE MARROW TRANSPLANT SURVIVORSHIP • • • Yes No Not sure 64 BONE MARROW TRANSPLANT SURVIVORSHIP 65 BONE MARROW TRANSPLANT SURVIVORSHIP 66 If you have experienced low moods as reflected by your answers to this survey, do you believe the low moods is related to your history of cancer and its treatment, including BMT? o Yes o No o Not sure 1. Prior to your transplant, has a doctor or other health care provider ever told you that you have depression, anxiety, or bipolar disorder? o Yes o No 2. Have you visited a mental health professional, such as a social worker, psychologist, or psychiatrist since your transplant? o Yes o No 3. Have you had thoughts of harming yourself or suicide since your transplant? o Yes, if yes, provide UNI crisis line: 801-587-3000. o No 4. Have you been dependent on any of the following substances after the transplant? Please answer yes or no to the following. o Alcohol o Tobacco o Marijuana o Cocaine o Methamphetamines o Hallucinogens o Heroin o Ecstacy o Prescription stimulants, such as Ritalin/Adderall o If yes, were you taking them as prescribed? o Prescription controlled substances, e.g. pain meds, benzodiazepines, or Ambien o If yes, were you taking them as prescribed? 5. Were you ever dependent on any of the following before transplant? o Alcohol o Tobacco o Marijuana o Cocaine o Methamphetamines o Hallucinogens o Heroin or other opiates o Ecstasy o Prescription stimulants, such as Ritalin/Adderall o If yes, were you taking them as prescribed? o Prescription controlled substances, e.g. pain meds, benzodiazepines, or Ambien o If yes, are you taking them as prescribed? BONE MARROW TRANSPLANT SURVIVORSHIP 67 Sexual Health 1. Are you currently sexually active? o Yes • How would you rate your satisfaction with your sexual relationships? Would you say you are: o Very dissatisfied o Somewhat dissatisfied o Neither satisfied nor dissatisfied o Somewhat satisfied o Very satisfied o No • To what extent do you agree or disagree that this is directly related to your transplant? Would you say that you: o completely disagree o Somewhat disagree o Neither agree nor disagree o Somewhat agree o completely agree 2. Do you feel that your transplant has lowered your self-esteem? o Yes o No 3. Have you experienced any fertility problems since your BMT? Fertility means the ability to have children. o Yes o No Physical Activities 1. Prior to your transplant, about how many times per week did you exercise for at least 30 minutes at a time? o 0 times per week o 1-2 times per week o 2-3 times per week o 3-4 times per week o 5 or more times per week 2. Since your transplant, about how many times per week do you exercise at least 30 minutes at a time? o 0 times per week o 1-2 times per week o 3-4 times per week o 5 or more times per week BONE MARROW TRANSPLANT SURVIVORSHIP 68 3. Did you receive any physical rehabilitation, such as physical therapy, after transplant? o Yes, go to Q3a. o No 3a. To what extent did physical therapy help with your physical functioning? By physical functioning, we mean the ability to carry out various activities that require physical capability, including self-care (basic activities of daily living [ADL] ) activities and activities that are required to maintain independence. o o o o o Not at all A little Somewhat Quite a bit Very much 4. To what extent would you say your post-bone marrow transplant physical functioning has increased or decreased, compared to pre-transplant? Compared to before transplant, has your functioning: o Decreased a lot o Decreased slightly o Not changed o Improved slightly o Improved a lot Financial 1. Overall, to what extent has your bone marrow transplant made it more difficult to work? o Not at all o A little o Somewhat o Quite a bit o Very much 2. Compared to before your bone marrow transplant, would you say that your financial situation is: o Much less secure than before the transplant o A little less secure than before the transplant o About the same as before the transplant o A little more secure than before the transplant o Much more secure than before the transplant 3. How would you rate your current financial situation? o Excellent o Good o Fair o Poor, ask Q4 and Q5 4. Have you had to declare bankruptcy because of costs related to your BMT? o Yes BONE MARROW TRANSPLANT SURVIVORSHIP 69 o No 5. Has your financial situation made it more difficult to see your doctors or get the medical care you need? o Yes, ask Q5A o No 5a. Have any of the following things happened to you as a result of your financial situation or not being able to afford them? o Skipped medications o Skipped routine medical appointments o Did not seek out medical care for a health problem 6. Is there anything you wish you had known about the financial impacts of the bone marrow transplant before you had it? o No o Yes, please describe : ___________________________________________ Post-transplant Care 1. How satisfied or dissatisfied are you with your post-bone marrow transplant care? o Very satisfied o Somewhat satisfied o Neutral o Somewhat dissatisfied o Very dissatisfied 2. Which resource component did you receive after the transplant? Please answer yes/no to each of the component. o Education regarding post- transplant complications o annual physical exam and laboratory evaluation for any organ damage or other late effects of transplant o Tests to monitor for subsequent cancers o Information about healthy living and wellness o Re-immunizations o Information or resources for dealing with financial hardship o Coordinated care between your local provider and the BMT physician o Physical therapy and/or dietary education o Did you receive any other resources other than those I just listed? (if yes, ask: can you tell me what those were?): _____________________________ 3. To what extent do you agree or disagree that a BMT physician should be the doctor who takes care of your BMT-related care? o Strongly Agree o Agree o Neutral o Disagree o Strongly Disagree 4. How much do you feel the quality of your post-transplant care has been affected by where you live? BONE MARROW TRANSPLANT SURVIVORSHIP 5. 6. 7. 8. 9. 70 o A great deal o Very Much o Somewhat o Not too much o Not at all Have any of the following factors been a barrier to getting the care you need for transplant-related health issues? o Has finding Transportation been a barrier to getting care? Yes/no o Has the Distance between your home and health care facilities been a barrier? o Is the Time it takes to travel to your health care provider been a barrier? o Are Financial considerations a barrier? o Are there any other things that have been a barrier to getting transplant-related care? (if yes, can you tell me what those are?)________________ How helpful do you think it would be for your post-transplant care if there was a peer-topeer mentoring system between other patients who had a BMT? (Peer-to-peer mentoring system means having another individual who may have gone through BMT to offer you support and advice.) o Not at all helpful o Slightly helpful o Moderately helpful o Helpful o Very helpful How helpful do you think it would be for your post-transplant care if a telemedicine service with a BMT provider were to be available? Telemedicine is a service that allows patients to connect with a provider remotely through the internet, rather than having to travel to a clinic to see your doctor. Would you say that a telemedicine service would be: o Not at all helpful o Slightly helpful o Moderately helpful o Helpful o Very helpful How helpful do you think it would be for your post-transplant care if a designated person was assigned to you that could help direct and support all your post-transplant needs and ensure coordination of care between all your healthcare providers? o Not at all helpful o Slightly helpful o Moderately helpful o Helpful o Very helpful Do you have high speed internet access at home? High speed internet, for our study purposes, is defined as the internet speed that allows you to stream video or music. o Yes BONE MARROW TRANSPLANT SURVIVORSHIP 71 o No 10. How comfortable are you with using the internet? o Very comfortable o Somewhat Comfortable o Not very comfortable Not at all comfortable The following questions will be based on the concept of a survivorship care plan. A survivorship care plan is a personalized document containing a summary of your medical history, cancer treatment, and potential long term effects from your cancer treatments. The document can help ensure that you get the best future care possible, to keep you as healthy as possible. It also contains information on wellness promotion. It is given to you and your primary care physician at the end of the cancer treatment so that your needs are met and that any followup care needed after your cancer treatment can be well coordinated. A. Based on this description, how helpful do you think having a survivorship care plan would be in improving your care after bone marrow transplant? o Not at all helpful o Slightly helpful o Moderately helpful o Helpful o Very helpful B. Based on this description and your experiences since transplant, what 3 pieces of information do you think would be of most importance to include in a survivorship care plan? ____________________________________________________________________ C. Do you see any limitations or downsides to providing a survivorship care plan for patients who have had a bone marrow transplant? o Yes, please explain: ____________________ o No Now, we will ask you some basic demographic questions. Demographic information o Has your address changed since you received your bone marrow transplant? We have your address listed as _________ in our records. o Yes ->ask Q1A o No  Skip to Q2 1a. If yes, what is your current address? [Note: make sure to gather zip code] ______________________________________ (Street Address) ________________, _____ ___________ (City, State, ZIP) Education, Employment, and Financial History BONE MARROW TRANSPLANT SURVIVORSHIP 72 Next, we'd like to ask a bit about your educational background, employment, and financial background. o What is the highest level of schooling you have completed? o Less than high school o High school graduate or GED (this includes technical or vocational training that does not count for college credit) o 2 year college degree/associate's degree o 4 year college degree/bachelor's degree o Graduate or professional degree, including master's, doctorate, medical, or law degree) o Were you employed prior to BMT? By employment, we mean working a job for pay. o Yes-Ask question 2A & 2B o No 2a: What was your occupation prior to BMT? List:_________________ 2b: What was your employment status prior to BMT? o Employed full time (30 hours per week or more) o Employed part time (Less than 30 hours per week) 3. Are you currently employed? o Yes-Ask question 3A o No, Skip to Q4 3a. What is your current employment status? o Employed full time (30 hours per week or more) o Employed part time (Less than 30 hours per week) o Unemployed and looking for work o Not working, and not looking for work o Retired o On short-term disability o On long-term disability 3b. [if employed:] What is your current occupation? ________________ 3c. [if employed:] About how many months after your bone marrow transplant did you resume working? ______ # of months 4. If employment status has changed since transplant, was your change in employment status a result of your bone marrow transplant? o Yes o No 5. What was your household's total annual income, before taxes, before you received your transplant? Was it o Less than 15 thousand dollars per year o 15 thousand to less than 25 thousand dollars per year BONE MARROW TRANSPLANT SURVIVORSHIP 73 o 25 thousand to less than 50 thousand dollars per year o 50 thousand to less than less than 75 thousand dollars per year o 75 thousand to less than less than 100k thousand dollars per year o More than 100 thousand dollars per year o Prefer not to say 6. Has your household's annual income changed since your transplant? o Yes, ask Q7 o No 7. What would you estimate your current household annual income to be, before taxes? o Less than 15 thousand dollars per year o 15 thousand to less than 25 thousand dollars per year o 25 thousand to less than 50 thousand dollars per year o 50 thousand to less than less than 75 thousand dollars per year o 75 thousand to less than less than 100k thousand dollars per year o More than 100 thousand dollars per year o Prefer not to say Finally, we would like to ask you some basic household questions. Social Information 1. What was your relationship status prior to the bone marrow transplant? o Single o Married o Living with partner, not married o Widowed o Divorced 2. Has your relationship status changed since your transplant? (yes/no) (if yes: What is your current relationship status? o Single o Married o Living with partner, not married o Widowed o Divorced 3. At the time of bone marrow transplant, were you the parent of any children under the age of 18 in your household? o Yes, ask 3A o No 3a. If yes, did your bone marrow transplant affect your ability to take care of these children? o Yes o No 4. What is your religious or spiritual preference? BONE MARROW TRANSPLANT SURVIVORSHIP 74 o Protestant (for example, Baptist, Methodist, Non-denominational, Lutheran, Presbyterian, Pentecostal, Episcopalian, Reformed, Church of Christ, etc.) o Roman Catholic o Mormon (LDS or Church of Jesus Christ of Latter-day Saints) o Orthodox (such as Greek, Russian, or some other Orthodox Church) o Jewish o Jewish o Muslim o Buddhist o Hindu o Atheist o Agnostic o Some other religion, please specify: ______________________ o Nothing in particular This concludes our survey. Thank you very much for your time and participation of this questionnaire. Appendix E: Final Poster Defense