Pain Management and Quality of Life for Sickle Cell Disease Patients This is a review of literature examining how frequent recurring episodes of pain affect the quality of life in the sickle cell disease patients. Several studies conducted concerning pain management and quality of life for sickle cell disease patients indicate additional studies needed. Identifying additional effective complementary alternate therapies is vital for a more improved quality of life. This will be necessary in order to reduce the number of painful episodes experienced by the sickle cell patient. Sickle cell disease is a genetic disorder of the red blood cells and further characterized by painful acute vaso-occlusive episodes where the sickle cell is stuck in the blood vessels, blocking the blood flow. This is one of the most common reasons leading up to hospitalization, the vaso-occlusive episodes. These episodes can lead to ischemia and infarctions over the entire body region with painful recurring, unpredictable, intense, and relentless episodes, lasting approximately 3-14 days (Yaster, Kost-Byerly, & Maxwell, 2000). According to Granados and Jacob (2009), the purpose of their study was to examine pain experienced and the effectiveness of analgesics for hospitalized adults with sickle cell disease. The literature review indicates a variety of reasons why inadequate pain management is ongoing in the adult (SCD) patients admitted with vaso-occlusive episodes. The focus is mainly on factors that affect the management of pain, including methods of analgesic administration, and non-pharmacologic regimens, therefore the perception of the provider is important in regards to treating sickle cell pain as identified in the study by (Shapiro, Benjamin, Payne & Heidrich, 1997; Steinberg, 1999; Yale et al., 2000). Little attention in the way of research studies has been examined in relation to the pain experience of the sickle cell adults. Ballas and Lusardi (2005) evaluated the sequence of hospital admissions of patients with sickle cell disease, reviewing the causes of recurring admissions, and the importance of the patient’s outcome of illness. All readmissions examined specifically within seven to thirty days from the initial admission discharge assessing for the rationale of the recurrence of hospital admission and relation to the prognosis of the sickle cell disease patient. The researchers evaluated the pain by a descriptive underlying research design knowledgeable by the sickle cell disease patients for intensity, location, and quality of pain. Fifty percent of patients admitted for intense painful episodes were readmitted within one month after discharge, and another estimated 16% were readmitted within one week after discharge. Severe pain is described as a degree of pain greater than six on a zero to ten numerical rating scales. A mean score of seven or greater indicates prematurity in discharging the sickle cell disease patients from the hospital. In conclusion, the patients admitted to the hospital with high pain scores were more likely to have lengthy hospitalizations, and to be discharged home with equally higher pain scores. The pain intensity scores from the previous discharge examined by the researchers indicated 71 readmission, in which 52 patients were readmitted for vaso-occlusive episodes, (Ballas & Lusardi, 2005). The pain score of study participants indicated a high pain intensity score, and the scores did not change consequently during prolonged episodes. Even higher pain intensity more so on days seven and eight were indicated for increase pain significance. Researchers further indicated that the main reason for hospital readmissions were early discharge to home settings, signs and symptoms of medication/drug withdrawal, that brought about the intense reoccurring episodes of vaso-occlusive illnesses. It was noted that readmissions to the hospital for the adult sickle cell disease patient is more common and researchers recommended future studies for improvement in pain management in the hospital and at home. In future studies, researchers will need to use a larger sample size to evaluate patterns of pain management, effectiveness and influence on quality of life in the sickle cell disease patient. Although, no evidence was identified where upward titration of analgesics was done it is recommended that development of algorithms be encouraged to help carefully plan decisions regarding titration of medications in adult patients with sickle cell disease during hospitalizations. Jiles and Morris, (2008) made known in their descriptive study of 62 patients (18 years of age and older) using Burckhardt and Anderson’s 16 item self-report and a demographic questionnaire used for data collection. The purpose of the study was to investigate the quality of life in adults with sickle cell anemia, hemoglobin SC, or Hemoglobin S beta thalassemia. The results revealed that the healthy populations average scores for quality of life scale is 90 and in this study the overall mean QOL score was 83.6 (SD=13.2) lower than those of the overall general population. The outcome of this study indicated additional research is necessary to advance the understanding of the factors that greatly affect quality of life in the management of sickle cell disease in order for patients to enjoy normal activities of life. A cross sectional descriptive study conducted by Yoon and Black (2006) researched both pharmacologic and complementary therapies used for pain management by caregivers of children with sickle cell disease (SCD). They further studied the prevalence and types of complementary therapies used for pain management by caregivers of children with SCD and made inquiries of caregivers’ concerning their interests in using complementary therapies in the future. Since there was no obtainable questionnaire to meet the principle of the study, a questionnaire was created by the chief researcher. Items included on the questionnaire was age of child, age of caregiver, use of analgesic, annual income estimate, caregivers educational level, and type of health insurance their child had available. Divisions were randomly ordered and included massage, chiropractic, acupuncture, energy healing, relaxation techniques, imagery, meditation, hypnosis, biofeedback, self-prayer, spiritual healing by others, music therapy, herbal or fold remedies, megavitiamins, yoga, tai chi and other body works, and transcutaneous electrical nerve stimulation. The prospective patients were identified, approached, and invited to participate in the study by the clinical coordinator of the sickle cell disease clinic. The study was explained and potential participants were provided an informed consent letter. All subjects were provided a room for privacy and questionnaires were completed either by the caregivers of the participants or by the research assistance. The research assistant was nearby in either case to answer any questions that might arise by the caregivers when completing his/her form. The instructions provided to the caregivers indicated the questionnaires listing of the sixteen complementary therapies. The caregivers were to indicate any usage of them within the last six months and were asked would they be interested in using any of the listed complementary therapies in the future. Statistical analyses was used including how often an event repeats itself over a set amount of time and expected values with standard deviations, were used to compare demographic variables, research use of pharmacological therapies for pain management between age groups, and evaluate pharmacologic/analgesic and complementary therapy use. Chi-square tests were done in the beginning of the study and carried through to completion comparing the demographic variables, scrutinized use of pharmacologic therapies for pain management between age groups, and compared use of pharmacologic and complementary therapies. The results of the most frequently used pain medication for children revealed a mean age of 9 years. The results indicated children using pain medications most frequently identified was ibuprofen (37.5%), acetaminophen with codeine (32.1%), and acetaminophen with oxycodone (14.5%). Complementary and alternative medicine use among children as well as adults has increased in the last ten years. In the study, caregivers with a mean age of 33 years was 70% of the 63 caregivers identified as using some form of complementary therapy. African American mothers made up 79% of the predominant race of caregivers and (56.9%) indicated an annual income less than $20,000. Sixty percent of caregivers had twelve years of education or less, and twenty-four percent reported at least 2 years of college education. Medicaid (76%) was the major source of coverage for the children, although 24% had private or other identifying insurance. Future studies should include investigating the safety and effectiveness of the most commonly used complementary therapies reported in this study as well as recognizing possible ways complementary and alternative medicine (CAM) may be used effectively with pharmacologic therapies for pain management in children with Sickle cell disease in order to offer greater longevity and overall improved quality of life. Yoon and Black (2006), Jiles and Morris (2008) and Granados and Jacob (2009) all indicate the need for future studies in management of pain in the sickle cell disease patients. All studies indicate that the genetic disorder most commonly found in the African- American affects approximately 70,000 in the United States. This genetic disorder affects the red blood cells causing a stasis of sickle shaped erythrocytes, in which occlusion of the cells microcirculation, causing ischemia, and infarction. These recurring, unpredictable, intensified, and persistent painful episodes prevent stability and overall quality of life in the sickle cell disease patient and all authors indicate the need for future studies. The purpose of this review of literature is to identify all of the effective therapies of pain management for sickle cell disease patients. Whether the therapies used are complementary or alternative therapies vs. analgesic regimens. There must be future studies to seek out the answers for improved methods of pain treatment in order to improve the quality of life for the patients with sickle cell disease to exceed living past the age of forty-two with an increased zest and quality of life.
Granados, R., & Jacob, E., (2009, May/June). Pain Experience in Hospitalized Adults with Sickle Cell Disease. Medsurg Nursing, 18 (3), 161-167,182. Jiles, V.M., & Morris, D. L., (2009). Quality of Life of adult patients with sickle cell disease. Journal of the American Academy of Nurse Practitioners, Volume 21, 340-349. doi: 10.1111/j.1745-7599.2009.00416x Yoon, S. L., & Black, S., (2006) Comprehensive, Integrative Management of Pain for Patients with Sickle-Cell Disease. The Journal of Alternative and Complementary Medicine, Volume 12, Number 10, pp. 995-1001.