Effects of the New Sickle Cell Disease Report

Nurses Perception: Effects of the New Sickle Cell Disease Program on the Management and Care Ofadults With Sickle Cell Disease

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Nurses Perception: Effects of the New Sickle Cell Disease Program on the Management and Care of Adults with Sickle Cell Disease.

The purpose of this research was to examine and assess the perception of the nurses who work with Sickle Cell Disease (SCD) patients and their experience on the newly structured SCD program at Yale New Haven Hospital (YNHH), which was opened on April 2012 and focuses on the treatment of adult SCD patients.

Aims: The overarching goal of this study was to examine nurse perceptions of their experiences with the SCD program at YNHH. The study had the following sub-goals:

1. Learning the perceptions of nurses working in a dedicated SCD unit on pain management for patients with Sickle Cell Disease.

2. Learning the perceptions of nurses working in a dedicated SCD unit on continuity of care for patients with Sickle Cell Disease.

3. Learning the perceptions of nurses working in a dedicated SCD unit on interdisciplinary communication related to the care of patients with Sickle Cell Disease.

Research Questions that framed the study: In addition to determine how the nurses perceived the SCD program, the study had to develop research questions that were focused on those questions. There were thirteen core research questions that framed the direction of the study. These thirteen core research questions were the questions that were targeted by the survey questions. They include the following questions: How well did the use of Patient Controlled Analgesia (PCA) improve the management of patients’ pain? How well tiered oral dosing improve the management of patients’ pain? Are patients expressing satisfaction with the use of PCA? Are patients satisfied with Tiered Oral Dosing? How well did the PCA pumps reduce nurses’ time spent in medication administration activities? How significant is the reduction in noncompliant behavior of patients after the integrated care plans were implemented? How better equipped do nurses feel on dealing with escalating patients after having the education session on De-escalation was completed? How well did interdisciplinary rounds improve the nurses’ knowledge about each patient’s goals of care? Did interdisciplinary rounds improve nurses’ involvement in decisions on goals of care? Did interdisciplinary rounds improve the patients’ involvement in decisions on goals of care? Are interdisciplinary rounds improving patients’ abilities to verbalize their goals of care? Does the SCD program/unit including specialized staff education and training provide the nurses the ability to successfully care for patients with SCD? Is the inpatient-outpatient cross coverage by Advanced Practice Registered Nurses improving patient continuity of care? Together, these thirteen questions formed the survey that was administered to the nurses.

Literature Review: Literature resources included the following articles:

Nurses’ Attitudes and Practices in Sickle Cell Pain Management by Ardie Pack-Mabien, E Labbe, D. Herbert and J. Haynes, Jr.

Factors Affecting Hospital Staff Judgments About Sickle Cell Disease Pain by James Elander, Malgorzata Marczewska, Roger Amos, Aldine Thomas and Sekayi Tangayi

Race Matters: Perceptions of Race and Racism in a Sickle Cell Center by Stephen Nelson and Heather Hackman

A Video- Intervention to Improve Clinician Attitudes Toward Patients with Sickle Cell Disease: The Results of a Randomized Experiment by Carlton Haywood, Sopie Lanzkron, Mark hughes, Rochelle Brown, Michele Masa, Neda Ratanawongsa, and Mary Catherine Beach

Sickle Cell Disease: The Need for a Public Health Agenda by Hussain Yusuf, Michele Lloyd-Puryear, Althea Grant, Christopher Parker, Melissa Creary, and Hany Atrash

Barriers to Better Pain Control in Hospitalized Patients by Rebecca Drayer, Jessica Henderson and Marcus Reidenberg

A Review of the Literature on the Multiple Dimensions of Chronic Pain in Adults with Sickle Cell Disease by Lou Ella Taylor, Nancy Stotts, Janice Humphreys, Marsha Treadwell and Christine Miaskowski

Population Estimates of Sickle Cell Disease in the U.S. By Kathryn Hassell

Disability Among Individuals with Sickle Cell Disease by Mark Swanson, Scott Grosse and Roshni Kulkarni

Preventing Morbidity and Mortality from Sickle Cell Disease by Richard Olney

Research Design: This mixed-method descriptive study involved a survey conducted over a two-week period, which was administered to twenty six Registered Nurses (RN) who are currently working in the inpatient SCD unit. The study is descriptive because it asks for personal perceptions, which can be quantified through the use of a Likert scale, but is seeking qualitative information. The goal of the study was to assess the perception of nurses on the new SCD program, which opened on April 2012 in YNHH. The survey was developed for the purposes of the study and used a Likert scale to measure participant responses regarding nurse perception of the SCD program. The survey was created and reviewed by a multidisciplinary team composed of two Service Line Nursing Educators, two frontline registered nurses, Assistant Patient Services Manager, and Patient Services Manager. After development, the SCD Director and Director of Medicine Patient Services reviewed and approved the survey. The survey was the conducted anonymously over a two-year period. At the end of a two-week period, the data was collected, then analyzed by the YNHH Nursing Research director.

Reason for selecting this topic: The author has personal experience as an administrator-level employee at YNHH and has been involved with the SCD program since its April 2012 inception. Therefore, the author is aware of the challenges and successes that have been associated with the program. YNHH actively treats 150 or more adult patients with SCD each year, in a combination of inpatient and outpatient settings. In the past, inpatient care has been fragmented, challenging, and expensive. To help streamline the inpatient process, the administration created the Adult SCD program. The goal of the SCD unit was to provide a coordinated, structured multidisciplinary approach to caring for patients with SCD. As the Patient Service Manager of the Comprehensive Sickle Cell Medicine Unit, this study will help me to determine the overall perception of the frontline nursing staff on the effectiveness of the program. The results may be used as a validation of the effectiveness of the program as well as to identify areas of improvement.

Significance of research: The research is significant in that it will study the perceived efficacy of a nursing program at a specific hospital, allowing the administration to tailor the program to increase benefits based upon the study results. The results of the study can be shared with the YNHH as a performance improvement initiative. The study may also have utility beyond the SCD unit at YNHH; Sickle Cell Disease is a genetic disease that afflicts millions of people world-wide. If this program proves beneficial at YNHH, there is no reason that similar programs would not be beneficial at other hospitals.

Research Outcomes:

The data from this study will allow the identification of the nurses’ perceptions on the specific areas of the SCD program that are working well and also to identify shortfalls in practice and to develop strategies to improve care. The study determined that the nurses’ perceptions of the SCD were largely positive, although the survey did reveal information about areas where the nurses may have perceived possible room for improvement.

Stated assumptions/biases:

I have been working as the Patient Services Manager for the dedicated inpatient SCD unit for the past 18 months. Eighty percent of the registered nurses were novice when the unit opened. The leadership strategy that I implemented was transforming patient care (TPC). The focus of TPC is on a culture of safe and reliable care through TEAM- Teamwork, Excellence, Accountability and Mentorship. Before beginning the study, I was aware that the SCD had led to improvements in patient care, including improvements in patient’s hospitalization and utilization patterns. There is a decrease in average length of stay from 12.5 days to 7.5 in the first 9 months of FY 2012 and continuing to FY 2013. ED visits decreased by 13% in the first 9 months of FY 2013 comparing to FY 2012. Inpatient discharges decreased by 25% and patient days decreased by 55% respectively in FY 2013. In addition, outpatient visits increased by 16% since the program was implemented. The recent YNHH Employee Engagement survey results that 75.9% of nursing staff working in the unit are engaged. The patient satisfaction report showed great outcomes in patient’s experience. Anecdotal reports indicate greatly improved patient and staff satisfaction since implementation of the program. With all of these outcomes, I assumed that the nurses staff perceptions will be positive. In addition, I assumed that the registered nurses would be cooperative and willing to participate in this study and they were engaged and cooperative. I also realized that there were limited studies conducted about nurses perception on overall new adult SCD program.

Section I: Introduction

Sickle Cell Disease is a common disease that impacts millions of people worldwide. While it is a worldwide problem, its impact is felt disproportionately in different countries and among different subgroups. It is a genetically-linked disease, impacting people from certain populations at greater rates than people from other populations. Those at-risk populations have ancestors from Africa; the Mediterranean, India, South America, Central America, and parts of the Caribbean. In some areas, SCD is a major public health problem. Even in the United States, SCD is the most common inherited blood disorder, and it disproportionately impacts African-Americans and Hispanic-Americans. Furthermore, the disease impacts its victims differently; for some, the disease causes minor symptoms, while in others it is a life-altering disease with frequent hospitalization and requiring extensive treatment.

SCD is a disease impacting hemoglobin. Hemoglobin is the red protein that transports oxygen in the blood. Each molecule of hemoglobin has four subunits, which consist of an iron and a heme group; two of the subunits are alpha-globin and two of the subunits are beta-globin. SCD refers to a person having at least one of his or her beta-globin subunits replaced with hemoglobin-S. In SCD, the HBB gene’s instructions for the beta-globin are different from the normal population, and different mutations of the gene are responsible for different versions of SCD. Sickle cell anemia refers to patients who have both beta-globin units replaced with hemoglobin-S.

SCD is a genetic disorder, and, as such, it is passed from parents to children. However, many people are asymptomatic carriers of the disease and pass the disease along to their children unknowingly. That is due to the fact that SCD requires both parents to be carriers of the disease in order to cause an active problem in the recipient. It is an autosomal recessive gene, which means that both copies of the gene have mutations; if only one parent has mutations, then the recipient may be a carrier, but will not have signs or symptoms of the disease. Therefore, it can be important, especially in high risk groups, to engage in genetic counseling prior to conception or genetic testing as part of pre-natal care to evaluate risks and prepare and educate parents to deal with a child with a chronic health condition.

While considered a single disease, SCD may better be described as a group of disorders. SCD effects hemoglobin and people with SCD have atypical hemoglobin molecules (hemoglobin S), which distort their red blood cells from their normal shape into a sickle shape; hence, the name sickle cell. The change in shape of the blood cells can have a profound impact on the normal function of blood in the body. Sickle-shaped cells break down before regular-shape cells would break down, living an average of 10-20 days as compared to the normal 120 day life cycle of healthy hemoglobin. This rapid breakdown of cells can cause anemia, which is a low red blood cell count. This anemia can then lead to a variety of other health care problems.

The rapid breakdown is also responsible for the pain that is associated with SCD. The damaged sickle cells have a tendency to clump in the body. This causes them to stick, not only to one another, but also to the walls of blood vessels, restricting blood flow. The restricted blood flow can cause pain. Even more significant, the restricted blood flow can result in permanent damage to impacted organs. Severe pain is referred to an acute sickle cell crises. Some patients with SCD may develop acute chest syndrome, which is a vaso-occlusive crisis of the pulmonary vasculature.

SCD is a lifelong disease, but the sign and symptoms generally appear in childhood, though generally not until about 4 months of age. The most obvious sign of SCD is anemia. However, in addition to low red blood cells, a person may experience infections and pain. The severity of the infections can range from mild to severe, with some patients requiring hospitalization for treatment. Although anemia can be confirmed with a blood test, there are signs and symptoms related to anemia including: shortness of breath, dizziness, headaches, coldness in the extremities, jaundice, and paleness in the mucous membranes. Furthermore, there are two types of pain related to SCD: acute and chronic. Acute pain is linked to a sickle cell crises, has a sudden onset, and is considered an emergency. The duration, intensity, and frequency of sickle cell crises-relate pain varies from patient-to-patient. In addition, some SCD patients also experience chronic pain, particularly bone pain.

SCD is not generally a curable disease, though there is treatment and management available for the symptoms of the disease, which can help mitigate its impact. These treatments are aimed at pain relief, infection preventing, preventing organ damage, and dealing with or preventing strokes. Although generally not considered curable, some people with SCD have been cured through blood and marrow stem cell transplants. Infants with SCD may be treated with preventative antibiotics and need to adhere to a vaccination schedule to prevent viral infections. People who have severe sickle cell anemia may take a preventative drug hydroxyurea, which causes the body to make fetal hemoglobin. Fetal hemoglobin will not sickle. While it does not replace all of the hemoglobin in a patient’s body, this treatment can reduce the frequency and severity of SCD-related symptoms. However, hydroxyurea can reduce white blood count, making patient more prone to infections, so that treatment requires careful monitoring.

Many patients with SCD receive blood transfusions. Transfusions are used to treat anemia, but can also be aimed at helping with other complications from SCD. For many people, transfusions are a responsive treatment, and are used when anemia grows worse, when the patient has an infection, or when a patient’s spleen is enlarged. However, some SCD patients need regular blood transfusions. These transfusions are preventative and reduce the risk of acute chest syndrome, stroke, and spleen problems. However, transfusions are not risk free: patients can have allergic reactions to blood transfusions, multiple transfusions can lead to a buildup of iron in the body, and there is a risk, though minimal, of infections from blood transfusions.

Infections are one of the risks associated with SCD. While SCD patients do not outgrow their risk of infection as they age, the risk of infection is greater in childhood. This results in a preventative routine of daily antibiotics from infancy through preschool years, routine vaccinations, and possible preventative treatment later in life for high-risk patients. Even lower-risk patients are considered high-risk of infection, so that routine illnesses should be treated by a healthcare professional.

Finally, pain is one of the most critical issues facing SCD patients. Pain may be managed in a variety of ways, depending on severity. Mild pain may be treated with over-the-counter (OTC) medications, rest, fluids, and heating pads. More severe pain may require medical intervention including prescription medication, introduction of fluids, and, at times, hospitalization.

Yale New Haven Hospital is a world-class health care provider located in New Haven, Connecticut. YNHH is ranked among the best hospitals in the United States and is known for its excellent care in several disciplines, including: cancer, diabetes, endocrinology, gynecology, cardiac, neurology, and psychiatry. In April 2012, YNHH launched its new SCD program. The SCD program is a comprehensive program aimed at meeting the needs of patients with SCD. While treatment for SCD has always been available at the hospital, it was not always coordinated, with patients receiving treatment for the disease according to symptom. As a result, communication between service providers was limited, which may have had a negative impact on patient care. One of the goals of the SCD program is to coordinate that treatment and provide comprehensive services for SCD patients and their families. A secondary goal of the SCD program is to educate patients, families, and health care providers about the treatment of SCD, and thus reduce medical emergencies. Finally, through the SCD program, YNHH’s Hematology Clinic is available to high-risk patients.

This research developed and evolved from a desire to examine whether nurses believed that this coordinated SCD program was improving their ability to provide services to SCD patients. Three overriding questions surrounded the development of the research: whether the SCD program helped with pain management; whether the SCD program provided a greater continuity of care for SCD patients than existed before the program; and whether the existence of the SCD program increased interdisciplinary communication about the needs and treatment of patients with SCD. If the nurses responded positively to questions aimed at discovering their feelings about those three core areas, then the SCD program would appear to be accomplishing its goals. However, if the nurses failed to respond positively to those questions, then the negative responses could be indicative of problems with the program, and may even be able to offer suggestions for improvement with perceived problem areas.

I have been working as the Patient Services Manager for the dedicated inpatient SCD unit since the program transition in April 2012. When the unit opened, most of the nurses were novices and had not previously worked in any similar units. As a leader, I implemented a leadership strategy of TPC, which focused on providing the best quality care for patients by creating a culture of safety and reliability. I used the TEAM approach to create this culture, focusing on teamwork, excellence, accountability, and mentorship.

I was able to witness some of the improvements that the SCD brought to patient care, which prompted my interest in investigating how nurses on the unit perceived those changes. The changes I had observed were focused on patient’s hospitalization and utilization patterns. One of the primary goals of the SCD program was to reduce patient hospitalization by increasing education of the disease and promoting preventative care, so that patients would have a reduced need for acute care services. The program appears to have had significant success in that area. I have observed a decrease in average length of stay from 12.5 days to 7.5 in the first 9 months of fiscal year (FY) 2012 and continuing to FY 2013. ED visits decreased by 13% in the first 9 months of FY 2013 comparing to FY 2012. Inpatient discharges decreased by 25% and patient days decreased by 55% respectively in FY 2013. In addition, outpatient visits increased by 16% since the program was implemented.

In addition to information about the SCD program specifically, I am also aware of nurse and patient satisfaction surveys, which reflect high levels of engagement by YNHH’s nursing staff and high satisfaction by patients. However, none of these surveys have specifically focused on the SCD program. Anecdotal reports indicate greatly improved patient and staff satisfaction since implementation of the program. As a result, I decided to develop a survey to examine the three core areas of SCD programs, as they relate to nurse perception: pain management, continuity of care, and interdisciplinary communication.

Section II: Literature Review

Because the term SCD actually refers to a variety of syndromes, most notably sickle cell anemia, and covers a range of different patient symptomatology, it is important to examine whether the dedicated SCD program is sufficient to meet the needs of those patients. Healthcare workers, who deal with SCD patients on a daily basis, may be able to provide insight into the efficacy of services by sharing their perceptions of patient care issues. This literature review will discuss the patient care issues that occur most frequently in treating patients with SCD, and examine how the established SCD program may enhance YNHH’s ability to provide high-quality care to patients, based upon their needs.

YNHH’s SCD program is aimed at helping provide improved adult patient care while also driving down costs to patients and healthcare providers. The fact that the program is aimed at providing adult care is significant. SCD used to kill people in childhood, with the life expectancy of most patients with SCD limited to their teens until the mid 1970s (Taylor et al., 2010). Medical advances in the last forty years have made a tremendous difference, tripling the average survival rate of SCD patients since the mid1970s (Taylor et al., 2010). What this has meant for practitioners is that they have had to grow programs aimed at handling an adult patient population.

Understanding the pathophysiology of SCD is critical to understanding treatment, why there is currently no cure, and why the disease is associated with significant pain. Rees et al. undertook a literature review to examine the modern scholarship surrounding the disease (2010). They describe how the sickle shaped cell is created and the implications of both the underlying and resulting changes. “HbS is caused by a mutation in the ?-globin gene in which the 17th nucleotide is changed from thymine to adenine and the sixth aminoacid in the ?-globin chain becomes valine instead of glutamic acid. This mutation produces a hydrophobic motif in the deoxygenated HbS tetramer that results in binding between ?1 and ?2 chains of two aemoglobin molecules. This crystallisation produces a polymer nucleus, which grows and fills the erythrocyte, disrupting its architecture and flexibility and promoting cellular dehydration, with physical and oxidative cellular stress” (Rees et al., 2010). What determines the severity of the disease is the “rate and extent of HbS polymerization” (Rees et. al, 2010). Moreover, it appears that genetic factors are linked to the severity of the disease, including whether or not there is a hereditary persistence of fetal haemoglobin (Rees et al., 2010). Not surprisingly, hereditary factos can impact treatment and disease prognosis. The disease results in two conditions: anemia and vaso-occlusion. It is the vaso-occlusion that is linked with the pain associated with ACD. “Acute vaso-occlusive pain is thought to be caused by entrapment of erythrocytes and leucocytes in the microcirculation, causing vascular obstruction and tissue ischaemia. Although this process requires HbS polymerisation, the event that triggers the vascular obstruction by sickle erythrocytes is often inflammatory” (Rees et al., 2010). In other words, not only are patients with SCD more likely to have compromised immune systems, but they are also more likely to suffer from severe side effects from infection, because infection often leads to inflammation. What this means is that SCD patients must have a comprehensive health care system that is established, not only to treat the disease and its complications, but also to ensure routine prevention.

One of the hurdles to establishing effective care for patients with SCD is that the population of SCD patients is uncertain. There is no national registry for SCD patients, which can make it difficult to focus an appropriate level of resources on the disease, ensuring adequate care for all patients suffering from SCD. Hassell undertook a study to determine the prevalence of SCD in modern America. She used population estimates from the 2008 U.S. Census, including estimates of both African-American and Hispanic births because of their high-risk status, to account for birth-cohort disease prevalence, then corrected for early mortality (2010). Doing so, Hassell was able to estimate 72,000-98,000 people living with SCD (2010). However, she acknowledges that her figures are hampered due to a lack of available information (Hassell, 2010). The natural conclusion of a lack of information is that there may not be an appropriate level of resources available to people with SCD because of a lack of knowledge about the community.

Furthermore, changes in treatment efficacy have altered what it means to receive a SCD diagnosis. In the 1970s, SCD was synonymous with an early death and life expectancy was not expected to exceed one’s teens. Preventative medicine and developing treatments have changed that reality, making early death from SCD rarer. While this is a plus, it has also created a vacuum in medical knowledge, because prior SCD specialists were faced with different conditions and a population of a different age. In fact, “as early deaths from sickle cell disease become less frequent, longitudinal studies of morbidity will be important for policy makers interested in assessing measures for preventing such morbidity among people with sickle cell disease” (Olney, 1999). So far, research is indicating that preventative treatment provides significant contributions to declining mortality rates and may also reduce hospitalization rates and costs (Olney, 1999).

While modern treatments have been able to prolong the lifespan and improve living conditions for many patients with SCD, the reality remains that it can be a harsh, debilitating disease. Some may dismiss the disease as little more than a blood disorder, ignoring the fact that blood plays a critical role in the survival of all bodily systems. As a result, patients with SCD often experience complications in other organ systems. For some patients, these complications are mild. For other patients, the complications are of sufficient severity to impact the patient’s quality of life and ability to participate in the community (Swanson et al., 2011). Moreover, these effects are cumulative. For example, a child with SCD may fall behind in school work because of frequent hospitalizations, which not only puts the child at an academic disadvantage, but also a social disadvantage. When SCD was equated with mortality in childhood, the fact that patients with SCD did not have the same opportunities as other children did not have long-term impacts. However, “As most children born with SCD now survive to adulthood, they have a right to expect to live productive, independent lives, with full participation in work, community, and relationships. Health providers and parents need to track function in academic, cognitive, social, and emotional domains to identify children who need help” (Swanson et al., 2011). Further, one might suggest that these interventions should not be limited to pediatric patients, but that comprehensive SCD care would also focus on meeting the unmet social, educational, and cognitive needs of these patients (Swanson et al., 2011).

The fact that there are unmet needs associated with SCD reinforces the idea that SCD should be examined from a public health perspective. There have been some initiatives that have focused on the newborn screening programs for early identification of SCD as well as initiatives that have focused on genetic screening in at-risk populations (Yusuf et al., 2011). However, examining disease occurrence, health outcomes, and access to healthcare are important public health initiatives that should be developed in order to further the progress of SCD. Without focusing on the public health initiatives associated with the disease, it is unlikely that the next few decades will see the same gains in the treatment of SCD as the last four decades. For example, the current practice of penicillin prophylaxis from 2 months through 5 years can only be understood through a comprehensive public health perspective, which takes into account, not only what is known about SCD, but also what is known about other diseases and how they spread in the community (Yusuf et al., 2011). Unlike some other public health efforts, public health programs focusing on SCD will not focus on prevention, but may focus on prevention of symptom development.

In both pediatric and adult populations, SCD treatment oftentimes focuses on pain. Pain is the primary reason that SCD patients are hospitalized, and these hospitalizations carry a significant financial cost. For example, “in 2004, 83,149 adults were hospitalized in the U.S. For SCD, incurring approximately $488 million in associated costs” (Taylor et al., 2010). Those figures had risen over the prior decade. However, studies have shown that having programs available to treat uncomplicated pain crises in an outpatient hospital setting not only reduce the costs of acute pain care, but also the likelihood that patients will require overnight hospitalization (Taylor et al., 2010).

In fact, pain may be the most pressing concern for many patients with SCD. This is not simply because pain hurts, but also because sickle cell pain (SCP) is linked to severity, and “the mortality rate for SCD has been linked to the frequency of SCP episodes” (Taylor et al., 2010). In fact, patients who experience significantly more pain are much more likely to die young (Taylor et al., 2010). Furthermore, pain impacts hospital utilization among SCD patients in a different manner than it might impact hospital utilization in patients with different diseases. “Most hospitalizations of patients with SCD are for a pain crisis. Another study observed that the number of pain episodes was significantly associated (P < 0.001) with the patients’ use of hospital services, even more so than demographic and clinical variables (i.e., comorbidities, hemoglobin [Hgb] level). A lifetime of unpredictable, recurrent, intense, and frequently persistent pain experiences and the accompanying recurrent use of opioids make pain associated with SCD unique among pain syndromes” (Taylor et al., 2010). In other words, unlike most other pain syndromes, SCD onsets during childhood, so that the patient may experience pain, both chronic and acute, at various points throughout one’s lifetime. Furthermore, unlike many other diseases where pain is a component of the disease, because there is no cure for most forms of SCD, the patient can expect pain management, but not a disease cure.

Most research of SCD pain focuses on acute pain and its management. However, chronic pain is a substantial problem for many SCD patients, as well. “Chronic pain in adults with SCD is a multifaceted experience that involves sensations, emotions, cognitions, memories, and context” (Taylor et al., 2010). Evaluating chronic pain involves an examination of multiple factors: pain occurrence, pattern, pain episodes, duration, quality, location, and intensity (Taylor et al., 2010). When all of the factors are considered, it becomes clear that there are aggravating factors that can exacerbate the chronic pain experienced by many with SCD. These factors include: “stress, negative affect (NA), physical exertion, exposure to extreme temperatures, and the number of sickle cell episodes” (Taylor et al., 2010). While a patient may not be able to control the number of sickle cell episodes, the other factors are within patient control. Therefore, one would anticipate that an educational program aimed at educating patients, families, and community healthcare providers about how to reduce hospitalizations would be able to incorporate that information into prevention education programs.

Furthermore, specialized SCD units can focus on the pain that is part of the disease, helping ensure that patients have greater access to pain treatment methods. For a variety of reasons, pain treatment in hospitals is frequently inadequate. Although hospitals generally have the ability to provide patients with medications that will adequately treat their pain, in many instances patients are denied access to these medications. The most common reasons for denying adequate pain control for hospitalized patients include: a fear of iatrogenic addiction; belief by staff that patients exaggerate their levels of pain; a belief that intense pain leads to intense pain behaviors; and disagreement among hospital medical personnel about how to assess and treat pain (Drayer et al., 1999). The reality is that some people do present in emergency rooms with pain in an effort to get medication, and emergency room physicians and nurses has to beware of treating med-seekers with medications, particularly addictive medications. However, given that SCD patients will have medical histories that reflect their claims and are known to experience significant levels of both chronic and acute pain, it would be erroneous to treat them as med-seekers. Moreover, while the risk of addiction may be greater in those who suffer from chronic pain than it is for the generic hospitalized population, medication addiction may be a secondary issue for some SCD patients. Furthermore, adult SCD patients, who have generally experienced both chronic and acute pain episodes in the past may not behave in a manner that is indicative of their pain level. Therefore, relying on non-specialized staff to help assess patient pain levels may be particularly unhelpful with this group of people. Having medical personnel who are familiar with the pain that is specific to SCD and aware that it is episodic and recurring can be critical to ensuring timely and effective pain management in patients presenting with acute or chronic pain episodes.

There are several factors specifically linked to hospital judgments about pain in SCD patients. Medical professionals use contextual cues to help them determine whether pain is genuine. A lack of familiarity with SCD patients can deprive them of much-needed context, leading to conclusions that genuine SCD pain is actually driven by addiction. Elander et al. specifically engaged in a comparison of hospital staff reactions to patients who presented with genuine symptoms of analgesic addiction and SCD patients whose symptoms merely resembled the symptoms of such addiction (2006). These patient descriptions included two common factors that are frequently associated with addiction: pain behavior resembling addiction and disputes with staff (Elander et al., 2006). Their results were fascinating. The study suggested that the medical professionals were able to differentiate actual addiction from patients presenting with symptoms similar to addiction. However, despite that ability to differentiate between non-addicted and addicted patients, the staff did not differentiate in their perception of the analgesic needs of the two groups (Elander et al., 2006). As a result, even though SCD patients were not consciously treated by staff as having addictions, they were subconsciously treated that way, which may have reduced their ability to get much-needed pain relieving medications (Elander et al., 2006). In fact, the increasing need for pain killers in some SCD patients, combined with the fact that they may use more than the prescribed amount to deal with SCD pain can present as a pseudo-addiction (Elander et al., 2006). However, rather than focusing on ending the patient’s use of pain medications, those scenarios might better be explored by examining other pain control options for that patient.

Furthermore, even for professionals who are accustomed to dealing with patients who present with SCD pain, it is important to realize that pain presents differently in different individuals, so that patients with symptoms that are otherwise identical may actually experience very different levels of pain. “It is important to understand that an individual’s perception and appreciation of pain are complex phenomena influenced by numerous variables such as coping mechanisms, chronicity, accessibility to health care, support structure, culture, age, and gender” (Pack-Mabien et al., 2001). Therefore, pain-relief must be focused on the individual’s perception and experience of pain, as well as focusing on more objective criteria, such as functioning and the ability to live a normal life-style (Pack-Mabien et al., 2001). Examining nurses who have exposure to patients with SCD, Pack-Mabien found some interesting results about nursing attitudes towards patients. “The majority (63%) of the surveyed nurses believed that drug addiction frequently develops in the treatment of sickle cell pain episodes. One hundred and three (97%) of the surveyed respondents believed that individuals with SCD who are addicted to opioids can also have pain episodes. Ninety-four (87%) of the respondents believed drug addiction should not be a primary nursing concern when caring for a patient with sickle cell pain episodes” (Pack-Mabien et al., 2001). In other words, the nurses recognized the possibility of addiction, they seemed aware that the patient could still be experiencing pain, and they also rated treatment for that addiction as secondary to any secondary addiction problems (Pack-Mabien et al., 2001). Furthermore, the greater the nurse’s age and nursing experience, the less likely they were to believe that drug addiction was likely to develop in the treatment of SCD (Pack-Mabien et al., 2001). A master’s education was also inversely related to the belief that SCD pain treatment leads to addiction (Pack-Mabien et al., 2001). Taken together, this constellation of factors suggests that education can be a powerful tool in helping healthcare providers treat SCD patients with appropriate levels of respect, and helping remove suspicion that SCD patients seeking treatment for pain are addicts.

The Pack-Mabien study also provides interesting insight into the ideal composition of SCD Units. The older nurses and nurses with higher educational levels and greater experience seemed far less judgmental than younger nurses. The study did not go so far as to suggest that empathy developed with age and experience, but it did reveal significant differences between younger, less-experienced nurses and older, more-experienced nurses. YNHH’s SCD unit was staffed primarily with novice nurses at its inception in April 2012. This could have resulted in a decline in patient care as compared to older, more-experienced nursing populations.

One may wonder why a specialized SCD unit would treat SCD patients presenting with pain any differently than other hospital staff would treat them, given that the health care professionals are going to share common experiences and perceptions about addiction and pain, regardless of the area of specialty. Furthermore, several studies have documented how these perceptions change attitudes towards patients with SCD and that these attitudes can have a significant impact on the healthcare received by SCD patients. These attitudes are not limited to pain-relieving behavior, though they can significantly impact patient access to pain relief. The attitudes include, but are not limited to stigmatizing SCD patients as addicts, disbelief in patient pain reports, not involving the patients in developing their own health care plans, and failing to demonstrate sympathy for the patients (Haywood et al., 2010) . However, research has demonstrated that targeted training can help improve physician attitude towards patients with SCD. Haywood et al. devised a study with a short video intervention (2010). In the video, a patient with SCD described some of the barriers the patient experienced when seeking pain medication for his condition. The results demonstrated that the eight-minute intervention was effective in changing short-term clinician attitudes towards SCD patients (Haywood et al., 2010). This research would be relevant to a specialized SCD unit in two ways. First, it suggests that healthcare providers working in a specialized SCD unit be given such training to sensitize them to the needs of SCD patients. Second, it suggests that routine and consistent exposure to SCD patients may have its own sensitizing impact on healthcare workers.

The benefits of a specialized SCD unit are not limited to pain management. In fact, a specialized SCD unit can take a chronic care approach to treating disease. This chronic care approach is believed to be effective in helping improve patient care. The six components of a chronic care model are: “(1) community resources and policies, (2) health care organization, (3) self-management support, (4) delivery system design, (5) decision support, and (6) clinical information systems” (Artz et al., 2010). Investigating the use of a chronic care model to deliver services to SCD patients helps explain whether YNHH’s SCD program, which has the attributes of a chronic care model, should be resulting in improved patient care. Artz et al. examine a SCD program at an academic tertiary care medical center in Chicago. What they discovered was that a comprehensive care program did improve patient care in ways that went beyond pain management. For example, hydroxyurea, which is currently the only FDA approved drug to treat SCD, was underprescribed at the beginning of the study, despite it having many benefits for patients. Involvement in a comprehensive care program changed utilization/prescription from 14% of the patients to 44% of patients (Artz et al., 2010). Furthermore, only 3% of patients had undocumented failure to utilize hydroxyurea by the conclusion of the study; almost all of the patients who were not on the medication had documented health contraindications (Artz et al., 2010). Furthermore, there were other indications that the program was proving helpful to patients: there was a decrease in the number of admissions, a decrease in 30-day readmissions, and a decrease in length of stay (Artz et al., 2010).

While appropriate pain management may be one of the goals of the SCD unit, it is not the only goal of the unit. The unit also hopes to reduce hospitalizations, and therefore costs, for patients with SCD. One way to do this is to ensure that patients have access to the appropriate care when first presenting to the hospital. Rehospitalization rate studies focusing on SCD patients have been difficult because most studies have focused on sub-groups within the population. These difficulties have been so significant that Brousseau et al., questioned whether it was even appropriate to use the 30 day rehospitalization benchmark as a clinical indicator of quality of care for SCD patients (2010). Therefore, they instituted a study to investigate benchmark rehospitalization rates of patients with SCD. What they found was that rehospitalization, even within the 30 day window, was relatively common for patients with SCD of sufficient severity to prompt a hospitalization in the first place. Their study focused on eight hospitals spread throughout different geographical areas in the United States, and encompassed 21,112 people with SCD (Brousseau et al., 2010). These patients had 109,344 encounters, which included both ER visits and hospitalizations. This was a mean of 2.59 encounters per patient, per year (Brousseau et al., 2010). They found that certain groups were likely to have more encounters, including those aged 18-30, and those with public insurance (Brousseau et al., 2010). The 30- day and 14-day rehospitalization rates were high for the patients; the 30 day rate was 33.4% and the 14-day was 22.1% (Brousseau et al., 2010). Moreover, in the groups most likely to have more encounters, rehospitalization rates were also high (Brousseau et al., 2010). These high rehospitalization numbers suggest that a 30-day benchmark may not adequately reflect some of the needs of the SCD patient community. Instead, focusing, like YNHH’s program does, on reducing the overall rate of hospitalization, rather than the rate of rehospitalization, may give a better indication of the success of the overall program.

When considering care issues surrounding SCD, it is impossible to ignore the impact of race and socioeconomic status. It is well established that both race and lower socioeconomic status impact access to health care. SCD disproportionately impacts African-Americans and Hispanics, who are not only more likely to experience race-based discrimination, but are also more likely to be members of lower socioeconomic class groups. It has already been established that some healthcare providers assume that SCD patients are addicted to their painkillers and that this feeling alters their treatment of the patients. When one factors in race, the treatment problems become more complicated. Staff and family members in SCD centers have admitted to perceptions that whites receive better treatment than blacks (Nelson & Hackman, 2013). That does not mean that all patients and staff at SCD centers believe that race alters treatment at their facility. Moreover, the feeling that race is impacting health care may have as much to do with how people are socialized to view race as with the actual provision of care. Nelson and Hackman investigated perceptions of how race impacted health care at a SCD center. They found that there were differences in staff perceptions and patient and family perceptions, with patients and families more likely to believe that race impacted health care than staff was (Nelson & Hackman, 2013). There is also a racial impact on those results. “Only 4% of white physicians felt that our health care system frequently treats people unfairly based on race, while 41% of black physicians felt this way. Similarly, in our survey half of patients and families saw race as affecting health care, but less than one-third of staff perceived this. This was less of an issue with our patients and families who identified as African when compared to our African-American families. More African respondents than African-Americans disagreed with the statement that race influences the quality of healthcare (38.4% vs. 14.2%, P 1/4-0.009, OR 3.4). This is likely related to the amount of time a person of color has lived in our racialized society” (Nelson & Hackman, 2013). However, in many instances, patients and families perceived race as less of an issue than staff, which those authors attributed to the idea of comparative racism, and the notion that the SCD center might exhibit racial bias and still be less biased than other institutions encountered in daily life (Nelson & Hackman, 2013). What all of this suggests is that there is a perception that race impacts treatment in SCD centers, and, especially when one considers that SCD disproportionately impacts minorities, such a perception could lead to a lack of patient confidence in the care received. Unfortunately, their research also demonstrates that provider attitudes are not changing, suggesting than a targeted intervention, such as racial awareness training, may be necessary to change attitudes (Nelson & Hackman, 2013). As a result, specialized SCD centers should focus on racial sensitivity and awareness issues.

How much this systemic racism impact provider attitudes towards patients is unknown. Anecdotally, SCD patients often report negative provider attitudes. However, little has been done to examine these reports and attempt to quantify them. Ratanawongsa et al. engaged in a study to investigate the validity and reliability of a scale they created to measure provider attitudes towards SCD patients suffering from vao-occlusive crises. They developed a 7-item Positive Provider Attitude toward Sickle Cell Patients Scale (PASS), with higher scores indicating more positive attitudes. Their findings, which substantiated some of the hypotheses they had about the results, made them feel that the PASS may be a valid measuring instrument for examining provider attitudes (Ratanawongsa et al., 2009). The results also suggested that nurses and inpatient providers had higher PASS scores (Ratanawongsa et al., 2009). Patient characteristics also impacted PASS scores, so that patient with more frequent hospitalizations and who had previously had disputes with the hospital staff were associated with lower PASS scores, while more highly educated and employed patients were associated with higher PASS scores (Ratanawongsa et al., 2009). This suggests either that hospital staff treats some patients better or that patients with certain characteristics have better perceptions of staff treatment.

References

Artz, N., Whelan, C., Feehan, S. (2010). Caring for the adult with Sickle Cell Disease: Results of a multidisciplinary pilot program. J Natl Med Assoc, 102, 1009-1016.

Brousseau, D., Owens, P., Mosso, A., Panepinto, J., & Steiner, C. (2010). Acute care utilization and rehospitalizations for Sickle Cell Disease. JAMA, 303(13), 1288-1294.

Drayer, R.A., Henderson, J., & Reidenberg, M. (1999). Barriers to better pain control in hospitalized patients. Journal of Pain and Symptom Management, 17(6), 434-440.

Elander, J., Marczewska, M., Amos, R., Thomas, A., & Tangayi, S. (2006). Factors affecting hospital staff judgments about sickle Cell Disease pain. Journal of Behavioral Medicine, 29(2), 203-214.

Hassell, K. (2010). Population estimates of Sickle Cell Disease in the U.S. Am J. Prev Med

38(4S), S512 — S521.

Haywood, C., Lanzkron, S., Hughes, M.T., Brown, R., Massa, M., Ratanawongsa, N., & Beach,

M.C. (2010). A video-intervention to improve clinician attitudes toward patients with sickle cell disease: The results of a randomized experiment. Journal of General Internal Medicine, 26(5), 518-523.

Nelson, S. & Hackman, H. (2013). Race matters: Perceptions of race and racism in a Sickle

Cell center. Pediatr Blood Cancer, 60, 451-454.

Olney, R. (1999). Preventing morbidity and mortality from Sickle Cell Disease: A public health perspective. Am J. Prev Med, 16(2), 116-121.

Pack-Mabien, A., Labbe, E., Herbert, D., & Haynes, J. (2001). Nurses’ attitudes and practices in Sickle Cell pain management. Applied Nursing Research, 14(4), 187-192.

Ratanawongsa, N., Haywood, C., Bediako, S., Lattimer, L., Lanzkron, S., Hill, P., Powe, N., & Beach, M.C. (2009). Health care provider attitudes towards patients with acute vaso-occlusive crisis due to sickle cell disease: Development of a scale. Patient Education and Counseling, 76, 272-278.

Rees, D., Williams, T., & Gladwin, M. (2010). Sickle-cell disease. Lancet, 376, 2018-31.

Swanson, M., Grosse, S., & Kulkarni, R. (2011). Disability among individuals with Sickle Cell

Disease: Literature review from a public health perspective. Am J. Prev Med, 41(6S4), S391-S397.

Taylor, L.E.V., Stotts, N.A., Humphreys, J., Treadwell, M.J., & Miaskowski, C. (2010). A

review of the literature on the multiple dimensions of chronic pain in adults with Sickle Cell Disease. Journal of Pain and Symptom Management, 40(3), 416-435.

Yusuf, H., Lloyd-Puryear, M., & Grant, A. (2011). Sickle Cell Disease: The need for a public health agenda. Am J. Prev Med, 41(6S4): S376-S383.


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