Care of Sickle Cell Disease Patients: Process Improvement & Change with Nurses

Editor's Notes

• #2: Hello, my name is Tosin Ola and today we will be discussing the implementation of a change initiative, the Sickle Cell Vulnerability Assessment, a tool that I created that is part of the handouts presented to you.
• #3: Sickle cell disease (SCD) is a hereditary blood disorder characterized by defective hemoglobin in the red blood cells (National Heart, Lung and Blood Institute [NHLBI], 2007). SCD patients have red blood cells that are shaped like inverted C’s, which can cause clusters and blockage in small blood vessels (NHLBI). This blockage leads to painful episodes, frequent hospitalizations and serious life-threatening complications (Tanabe & Myers, 2007, ¶ 1). Sickle cell disease (SCD) primarily affects those of African descent and Hispanics of Caribbean ancestry, but the “trait has also been found in those with Middle Eastern, Indian, Latin American, Native American, and Mediterranean heritage” (Strickland et al., 2001, p. 36). Approximately 12, 000 people in the western United States are affected by SCD (Steiner & Miller, 2006).The nurses at Providence Willamette Falls Hospital, particularly in the emergency room and med-surg units, voiced concerns with the care and management of this vulnerable population. One nurse stated, “We often get patients with sickle cell disease. So when we do, no one really understands how to manage their pain. I feel like I’m not doing anything because no matter how much pain medicine I give, they are still in pain.”
• #4: Populations with SCD are at risk for disparities primarily because of the lack of knowledge on the part of the healthcare providers regarding the disease; inadequate pain management and prejudice among the staff (Tanabe & Myers, 2007). On interviewing several nurses in the hospital, many acknowledge that they have never taken care of a patient with SCD and do not know what to assess for. The only nurse with experience of taking care of a SCD patient did not know the complications of the disease and wondered why sickle cell patients “always request pain medication when it’s obvious they are not in pain.”This presentation is a guide providing essential information to medical professionals on dealing with patients that have sickle cell anemia. In addition, the SCD questionnaire is designed to enhance the assessment of SCD patients by medical professionals in the emergency room and serve as a platform for understanding their vulnerabilities during assessment.Emphasis of this questionnaire is placed on identifying risk factors for depression, the patient’s socio-economic barriers, lifestyle habits, transportation issues, safe home environment, effective pain management and avenues for possible genetic counseling all of which sickle cell patients have shown vulnerability to (Dorsey & Murdaugh, 2003).
• #5: The Healthy People 2020 initiative, a set of health promotion and disease prevention objectives for the nation, aims to eliminate health disparities by the year 2020 (Goldberg et al., 2004, p. 2). Health disparities refer to gaps in the quality of health and healthcare across racial, ethnic and socioeconomic groups (U.S. Department of Health and Human Services [HHS], January, 2000, p. 2). Populations with SCD are at risk for disparities primarily because of the lack of knowledge on the part of the healthcare providers regarding the disease; inadequate assessment,inadequate pain management and prejudice among the staff (Tanabe & Myers, 2007). Other objectives listed by Healthy People 2020 in regards to sickle cell include “reduce hospitalizations related to sickle cell disease” and “improve transfusion safety and treatment of blood disorders” (Healthy People 2020 website).The World Health Organization lists infection prevention as a regulation for 2010 on its website. Sickle cell patients are prone to developing infection, and this can lead to further complications that may lead to death if not properly addressed (Tanabe & Myers, 2007).The Joint Commissions National Patient Safety Goals of 2009 stress patient involvement in care, early assessment of complications, early identification of at-risk patients and prevention of infection.
• #6: The American Society of Hematology (ASH) purports that, “Hospitals with low volumes of patients with sickle cell disease may have higher rates of adjusted mortality compared with hospitals with high numbers of patients with sickle cell disease (ASH, 2008). The cost of health care for children and adults with sickle cell disease annually is over $1.1 billion (Kauf, Coates, Huazhi, Mody-Patel, & Hartzema, 2009, p. 323). Elevated hospitalization rates for patients with sickle cell disease are largely a result of frequent vaso-occlusive crises (ASH, 2009). For sickle cell disease, 30 day re-hospitalization has become a benchmark for care quality. Previous reports have shown 30 day re-hospitalization rates as high as 30-47% and propose outpatient follow-up as a preventive measure (ASH, 2009). Proper assessment and treatment of SCD patients can prevent patient morbidities, enhance patient care and reduce the costs associated with hospitalization and re-hospitalization.
• #7: African Americans and Hispanics are more likely than whites to feel they have been treated disrespectfully during a health care visit—spoken to rudely, talked down to, or ignored (Goldberg et al., p. 14). Communication between patients and physicians is critical to the delivery of appropriate and effective treatment and care (Tanabe & Myers, 2006). SCD patients frequently report dissatisfaction with care they receive, which is often related to inadequate pain relief (Dorsey & Murdaugh, p. 45).During clinical sessions, two patients were interviewed in the hospital with sickle cell disease. They both had complaints of inadequate pain management at Willamette Falls Hospital. One stated that she would never return, “to this evil, heartless hospital.”On the other hand, the patient’s nurse stated that she did not, “believe the patient still had that much pain. She had gotten 4 mg of IV Dilaudid and was still complaining of pain.” The nurse also stated that she did not feel comfortable administering the maximum dose that was ordered by the physician because she did not want the patient to stop breathing. Inadequate pain relief results in a poor quality of life, passivity and aggressiveness when dealing with care providers and heightened distrust between SCD patients and their providers (Strickland et al., p. 37). Emergency clinicians often perceive sickle cell patients to be drug seeking (Tanabe & Myers, 2007, p. 419). This leads to long wait times in the emergency room, inadequate pain relief, and hardened attitudes by medical providers to SCD patients (Tanabe & Myers).
• #8: Using the Sickle Cell Vulnerability Assessment [SCVA] will improve efficiency of diagnosing and assessment of SCD patients in the emergency room. The nurses on the med-surg unit can also use the SCVA to guide them in preparing the nursing care plan, advocating for the patient, management of vulnerabilities and promotion of self-care management. Although modern medicine is able to detect SCD, these patients are vulnerable, often receive inadequate healthcare, have an inability to influence the quality of their care, and may lack the skills needed to improve self care and quality of life (Dorsey & Murdaugh, 2003). Many adults with SCD experience negative socio-economic effects related to the chronicity of SCD (Dorsey & Murdaugh, p. 45). Patients report that the painful episodes of SCD interfere with employment and school attendance, resulting in unemployment and interrupted career plans and eventually leading to unstable financial situations and or loss of employment (Strickland et al., p. 30).
• #9: The Sickle Cell Vulnerability Assessment is crafted based on existing research about sickle cell disease. The first section focuses on demographics, and asks questions about the patients full name, address, Date of birth, sex, and physician. These answers can be deduced from the patients medical file. The second section focuses on the patients educational background, giving the practitioner information on the best way to teach the patient using written, visual or spoken word.In the next section, the assessment focuses on the patient’s medical history. Questions on immunizations, allergies, childhood history, other illnesses, ailments, surgeries and previous hospitalizations are addressed here.The Medical section goes into the patients’ co-morbidities related to sickle cell. Since complications due to sickle cell can often develop quickly and lead to sepsis, stroke or death, knowledge of previous conditions is essential (Tanabe & Myers, 2006). Possible complications listed include Acute chest syndrome, Stroke, Peripheral Vascular disease, Pulmonary Hypertension, Leg ulcers, Priapism, Gallstones, Kidney problems, Hypertension, Avascular necrosis, Syncope, Osteomyelitis, Spleen problems, Retinopathy (eye), Meningitis, Pre-eclampsia and a section titled Other.The next section asks questions about if the patient has had blood transfusions, blood type, normal H&H (for new patients), if they object to transfusions and if they consent to transfusions. Since blood transfusions are given often in patients with SCD, understanding their beliefs surrounding this is essential.The Pain Assessment section focuses on identifying what kind of pain the patient is in, what the normal pain levels are, if one has daily pain, chest pain (which might signal acute chest syndrome), swelling in joints and pain medications taken previously, prescribed and used at home. It also asks the question “What medication/dose do you get in the hospital,” to further enhance the ER physician’s understanding when prescribing pain medicines in the ER. The same pain yardstick cannot be used for all sickle cell patients, since each one has different thresholds and types of pain (Strickland).The SCVA then asks questions of possible sickle cell vulnerabilities. Emphasis is placed on financial constraints (i.e. lack of insurance, co-pays) etc. so that the case manager can suggest programs to the patient that might help with paying medical bills and find patients eligible for Medicare. The next section deals with transportation, another issue that social work can help address prior to discharge. The next section deals with possible triggers of sickle cell crises/emergency room visit. Examples are airplane flight, travel to areas of high/low altitude (mountains, scuba diving, deep sea fishing, snowboarding etc.), Episodes of over-exertion, Menstruation, Cold, cough or sore throat, high fever; Dehydration, Been in extreme cold/hot weather conditions, Swimming. Practitioners can use this to note trends that lead to hospital visits in each SCD patients and counsel them on ways to reduce these risk factors.
• #10: The Lifestyle section allows the practitioner to understand the patient’s lifestyle, exercise regimen, use of alcohol (which may cause dehydration and lead to a crises), use of illicit drugs (some SCD patients use marijuana), herbal remedies (which may interfere with treatment plan) and a snapshot of the patient’s management of the disease. Education can then be geared toward fostering healthy lifestyle choices like exercise (low impact exercise recommended for SCD patients). If the patient uses marijuana, the patient can be given information on registering with the medical marijuana program in the state of Oregon. TheSexual activity asks questions about the patient’s sexual history, use of contraceptives (some contraception like Yazmin and Ortho-Evra have been shown to increase the risk of blood clots), if the patient is pregnant or wanting to become pregnant (SCD patients are in the high-risk pregnancy zone), genetic counseling to prevent the patient from having children with full blown sickle cell disease. Personal safety addresses living arrangements to assist social work in assessing for a safe home environment, placement for homeless patients and protection of SCD patients in abusive situations (Sutton, 2008). Since mental and emotional health is a huge component of a healthy body, the last section focuses on assessment of the patient’s mental state. Questions are geared towards addressing levels of depression, suicidal ideations, stress and how the patient deals with stress.
• #11: Unfreezing is the first stage in which group members become dissatisfied with the status quo and a motivation to change is created (Spector, 2010). This can be the most difficult part of change, since people are ingrained to old traditions and patterns. Resistance occurs when the members do not believe, accept or choose to ignore the problem (Spector). In the unfreezing stage, the staff must understand that there is a huge issue with the present treatment and assessment methods for sickle cell patients. The second stage is moving, also known as the transition stage; and this occurs when the employees alter their patterns of behavior and adopt new patterns of thinking and behavior (Schien, 2002, p. 36). Key precepts of the moving stage involve changing, learning new concepts, new meanings, and new standards. During this phase, the SCVA questionnaire will be implemented according to the previous timeline. The staff must gain familiarity, acceptance and comfort with the tool.Refreezing is the final stage; where structures and systems align with and reinforce new behaviors (Spector, 2010). Fundamentals of the refreezing stage include “internalizing new concepts, meanings, and standards, incorporating the behaviors into self-concept and identity and incorporating behaviors into ongoing relationships and groups” (Schien, 2002, p. 38). The Willamette Falls Hospital staff should re-freeze into using the SCVA questionnaire with all sickle cell patients.To implement this change, the best leader would be an achievement-oriented leader. An achievement-oriented leader would focus on setting challenging goals, seeking performance improvements, emphasizing excellence in performance, and showing confidence that employees will attain high levels of performance (Sullivan & Decker, 2009, p. 52). Since using the SCVA is a results oriented directive, creating an achievement model will help motivate employees into improving their performance and treatment towards sickle cell patients.
• #12: The plan will encompass education and training for nurses and staff at Willamette Falls Hospital on the sickle cell disease complications and vulnerabilities. Training will consist of stakeholders (Key Monitors), who will then continue the education throughout the three units in the facility. The SCVA questionnaire will be used as a tool to assess vulnerabilities in the target population, and then the practitioner will use the SCVA to create the patient care plan, educate and facilitate improved patient care for the SCD population.In the test phase, the SCVA will be used on the smaller CCU unit and pod A of the emergency department prior to be rolled out facility wide. This way, any kinks or questions can be handled before full implementation. Pre-existing bias, judgments and negative attitudes exist in the health care field toward sickle cell patients (Steiner & Miller, 2006), therefore, increasing education on the painful realities of living with SCD and creating greater empathetic levels of sensitivity and understanding among hospital employees toward SCD patients will be the largest hurdle. To overcome this issue, educational workshops and seminars presented to the faculty, staff and employees on biophysical factors, vulnerability issues, and personal hurdles of sickle cell patients will occur.
• #13: Week One: Review SCVA with stakeholders i.e. nursing supervisor, CNO, medical director, charge nurses, ED physicians, social work department. These key stakeholders will be trained to use the SCVA and can serve as Key Monitors when full implementation beginsWeek Two: Roll out test implementation in emergency room Pod A. Implementation should start on a smaller scale until all the kinks are worked out. Nurses will use the questionnaire for 2-3 weeks and then fill out a survey regarding its utility.Week Four: Reassessment and evaluation of outcomes. Based on the survey results, some changes will be implemented in the survey to improve its efficacy and ease of use.Week Five: Roll out SCVA on all medical units and emergency department. The SCVA will be implemented hospital wide with the stakeholders i.e. Key Monitors serving as point people on each unit to train and answer questions until all the staff is comfortable with using the SCVA.Week Six: Full implementation of SCVA hospital wide should be effective.
• #14: Implementation:The first seminar with key stakeholders will explain each of the risk factors and vulnerabilities the SCVA is assessing and what to do if the patient presents with any. Attention will be directed to case management and social work departments since majority of the vulnerabilities will fall within their scope of practice. Physicians must be educated on stronger pain management protocols based off the results from SCVA. A multidisciplinary approach is essential across the spectrum of care so that each unit and staff member understands their responsibilities and role in regards to sickle cell disease management. During the hour long education hour on each unit, an explanation and description of using the SCVA will occur. Staff will be given opportunity to ask questions. Key monitors and charge nurses are also available should staff need any assistance. Evaluation:During the Planning phase, satisfaction surveys will be sent to all sickle cell patients that have visited WFH in the last 90 days. 90 days after full implementation of the SCVA model, another set of surveys will be sent out to patients to garner feedback from their experiences. Every 3 months for the first year, the satisfaction survey will be collected and collated to improve quality and the level of care. To evaluate full implementation, weekly audits will be conducted by the nursing supervisor hospital wide to check the charts of patients admitted with sickle cell. The SCVA questionnaire should be completed on each patient in the hospital to achieve 100% full utilization. The staff will be notified of unit audits do not have the SCVA survey in the chart so that the nurse will work on it that shift. Charge nurses on each shift can also be delegated to remind nurses to fill out the questionnaire. To visualize quality of the WFH against the whole organization, the hospital can also participate in the annual Providence People Pulse and Press Ganey surveys.
• #15: Tanabe & Myers (2007), advocates that proper assessment in the emergency room is crucial to the care of sickle cell patients. Steiner & Miller (2006), state that sickle cell patients should be encouraged to increase their role in health care maintenance and self management. It is especially pertinent in the management of sickle cell disease, where the prevention and recognition of complications by the patient and their family remains a crucial part of the health maintenance process (Prabakhar, 2009). SCD is a painful, chronic, genetic disorder that affects many individuals and their families (AAP, 2002, p. 525). Adults with SCD face vulnerability factors that may lead to poor health status and quality of life (Dorsey & Murdaugh, 2003, p. 49). Improved self-care practices, family support, increased knowledge base and education are essential to improved quality of life and health status of SCD patients in both medical populations and the public (Dorsey & Murdaugh, p. 50).
• #16: This presentation examined the need for proper assessment and treatment for patients with SCD at Willamette Falls Hospital due to their particular vulnerabilities and disparity in healthcare. The Sickle cell vulnerability assessment is a tool that will be implemented in the hospital for all staff to use in understanding and developing a treatment plan for sickle cell patients. Upon successful implementation, our facility will be able to provide the best multidisciplinary care approach to sickle cell patients and give them tools in increasing their self-management abilities, thereby leading to a decrease in early morbidity, complications, and frequent hospitalizations. We must all work together to make this happen. Thank you for your participation, and I look forward to working with you in implementing this change initiative.