Acceptability of the MD Anderson Symptom Inventory and qualitative analysis of barriers to palliative care services for rural and non-rural populations

The United States health system strives to improve the care patients receive while reducing healthcare expenditures. A significant portion of the nation’s healthcare expenditure is spent on end of life care. Palliative care provides one solution to reducing healthcare expenditures while improving the patient experience. Reducing symptom intensity is one example of palliative care’s success. A midwest palliative care program was tasked to gather quality data on the service’s ability to manage patient symptoms. The program selected the MD Anderson Symptom Inventory to improve symptom assessment and provide quality metrics for the organization. Additionally, research suggests rural populations have poorer access to palliative care services compared to non-rural patients. In response, a qualitative questionnaire was administered to rural and non-rural patients at consultation to gather information regarding barriers to palliative care services. Finally, the quality improvement initiative was evaluated for acceptability, feasibility, and sustainability. The scholarly project provided the organization characteristics of the population served, accurately assessed symptoms, and tracked performance of symptom management over time. The implications of this project is the MD Anderson Symptom Inventory provided a sustainable and feasible plan for a community based palliative care program to generate and gather quality data. The perceived barrier questionnaire revealed that patients experience symptoms for a long time prior to a palliative care referral and a knowledge gap exists regarding the role and existence of palliative care. ACCEPTABILITY OF THE MDASI AND ANALYSIS OF BARRIERS 6 Executive Summary A midwest palliative care program was tasked to gather quality data on the service’s ability to manage patient symptoms. Therefore, the MD Anderson Symptom Inventory (MDASI) was administered to new home-based palliative care referrals to improve symptom assessment and provide quality metrics for the organization. Additionally, research suggests rural populations have poorer access to palliative care services compared to non-rural populations. In response, a qualitative questionnaire was administered to rural and non-rural patients at consultation to gather information regarding barriers to palliative care services. Implementing the MDASI provided characteristics of the patient population’s symptoms at consultation. The MDASI demonstrated that patients consulted for pain were in significant distress with an average pain rating of 7.93 out of 10 at consultation. However, patients who were consulted for pain and had a follow up interaction in 1 week had a mean pain improvement score of 6. The project design demonstrated that the MDASI is capable of measuring program effectiveness in managing symptoms over time. Upon evaluation of the scholarly project, it was learned that implementing the MDASI at consultation, 1 week after consultation, and 1 month after consultation was acceptable, feasible, and sustainable for the organization. Immediately following the administration of the MDASI, 4 short answer questions were posed to patients during the consultation phone call. The 4 questions were analyzed for themes and patterns. Responses to the 4 short answer questions revealed that patients experience symptoms for long durations of time prior to receiving a palliative care referral. Additionally, patients reported a number of barriers to palliative care services. The most frequently reported barrier was a lack of knowledge of the existence and role of palliative care. In all, 17 of 25 ACCEPTABILITY OF THE MDASI AND ANALYSIS OF BARRIERS 7 patients did not receive palliative care sooner because of a knowledge gap. Of these 17 patients, 15 responded identically by saying, “I didn’t know about it. ” Patients learned about palliative care most frequently from a primary care provider (PCP). Specifically, 9 of the 25 patients learned about palliative care from a PCP. An analysis of co-occurrences deduced that 4 of the 5 patients that reported symptom duration in years learned about palliative care from a PCP. Oncologists were the second most frequent source of palliative care knowledge, educating 4 patients. Lastly, all patients responded, “no” when asked, “Do you believe where you live impacted your ability to receive palliative care? ” The qualitative analysis of patient perceived barriers to palliative care is consistent with the concerns already described in literature. Patients in both rural and non-rural communities suffer from unrelieved symptoms for long durations of time prior to receiving palliative care. The qualitative analysis was also consistent with literature that suggests a knowledge gap in rural and non-rural communities. Although this knowledge is not new, it validates the need for improved widespread education of palliative care’s existence and role. ACCEPTABILITY OF THE MDASI AND ANALYSIS OF BARRIERS 8 Acceptability of the MD Anderson Symptom Inventory and qualitative analysis of barriers to palliative care services for rural and non-rural populations The goal of current healthcare reform known as the triple aim is to improve the health of populations, reduce cost, and improve the patient experience through quality care and improved patient satisfaction (Berwick, Nolan, & Whittington, 2008). The United States spends more money on healthcare than any other country yet our health outcomes are inferior to most developed countries (Bharadwaj et al., 2016). Moreover, in the United States there is a significant disparity in the allocation of healthcare resources among the population. In fact, in the United States two thirds of the nation’s healthcare expenditures are spent on just 5-10% of the population. This disproportionate utilization of limited healthcare resources is largely accrued during end of life. Although only 5% of patients with Medicare die each year, end of life care accounts for roughly 25% of Medicare expenditures (Riley & Lubitz, 2010). Background and Significance Almost one quarter of seniors live with at least 4 chronic medical conditions (Chen et al., 2015). The final stage of life in patients with chronic conditions is often characterized by heavy and aggressive healthcare utilization. However, research demonstrates that aggressive medical interventions in the final weeks of a patient’s life such as emergency department visits, hospitalizations, intensive care unit admissions, and chemotherapy administration are all associated with poor quality of life, poor quality of death, and perceived poor quality of end of life care by caregivers (Higgins, Garrido, & Prigerson, 2015; Hui et al., 2014). Palliative care can address this issue by providing guidance to patients and families to choose appropriate therapies that coincide with a patient’s goals and wishes. ACCEPTABILITY OF THE MDASI AND ANALYSIS OF BARRIERS 9 Palliative care is an interprofessional discipline that focuses on quality of life for patients with a life limiting illness by managing symptoms, facilitating communication, and guiding patients through medical decision-making (Hui et al., 2014). Quality palliative care is associated with reduced symptom burden, improved quality of life, increased patient and family satisfaction, cost avoidance, and reduced hospitalizations (Kerr, Tangeman, et al., 2014). Hospital systems have adopted palliative care programs in order to improve quality indicators and reduce costs. More recently, new recommendations encourage hospital systems to build and implement community based palliative care programs as an effort to involve palliative care earlier in a patient’s experience with a life limiting illness (Kerr, Tangeman, et al., 2014). Earlier palliative care engagement guides proactive rather than reactive decision-making, assessment and treatment of distressing symptoms sooner, and improves quality of life. In fact, an outpatient palliative care referral has been observed as an independent factor for improved end of life care (Hui et al., 2014). Problem Statement According to a comprehensive organizational assessment, a midwest community based hospice and palliative care program had a strong desire to gather metrics of program performance in order to evaluate the organization’s progress towards achieving the mission and vision. The purpose of this project was to implement and evaluate an evidence-based symptom inventory tool in a community based palliative care program. Community based palliative care teams are known to reduce cost and improve quality of life by managing distressing symptoms (Brumley et al., 2007). These services however are unavailable to many rural communities (M. A. Bakitas et al., 2015). In this project, the patient population was divided between rural and non-rural areas. To investigate this concern, ACCEPTABILITY OF THE MDASI AND ANALYSIS OF BARRIERS 10 additional focused assessment on the differences between rural and non-rural palliative care patients was completed to procure insights regarding perceived barriers to accessing palliative care services. The Theory of Distressing Symptoms was used as a theoretical framework to guide the selection and implementation of the symptom inventory tool. Short answer questions were formulated to inquire about patient knowledge of palliative care services, establish the duration of time the patient experienced symptoms prior to referral, determine perceived barriers to accessing services, and perceptions of how demographics may impact access to services. Finally, the organization’s acceptance of the implementation was measured through staff questionnaires. The evidence for the chosen tool and a plan for implementation and evaluation was outlined and discussed. The Theory of Unpleasant Symptoms guided conceptualization of the symptom experience and the PARiHS model directed implementation of the quality improvement project. Finally, the project describ