Call System to Increase Compliance with Clinic Visits in Patients with a Diagnosis of Sickle Cell Disease Pain

Paul A, Shaparin N and Dobson C

Published on: 2021-02-20


In 2009, the Comprehensive Sickle Cell Centers (CSCC) that provided care for sickle cell disease patients were forced to discontinue services, because the National Institute of Health funding opportunities ceased causing significant changes in patients care. There was an increase in emergency department (ED) visits, and an increase in hospitalization. In an effort to maintain the successes of the Bronx Comprehensive Sickle Cell Center (BCSCC) before the closure, a call system was initiated.

A pre-post-test design was used to fully capture the effectiveness of the call system and its impact on clinic visits. Data was collected for hospital admissions, ED visits, and clinic visits. Subjects were instructed to call when they had no medications and before ED visits.

A convenience sample of 12 consented participant was obtained; n = 5 males, n = 7 females. The inclusion criteria include, diagnosis of sickle cell disease, hospital stay of eight per year, clinic appointments of two per year and ED visits of eight per year. As a result, 2.75 fewer ED visits, 1.25 more clinic visits: fewer hospital admissions -0.9167.

The need for continued research is warranted in an effort to improved health care with less inpatient visits. Increase compliance with outpatient specialty visits; medicine, hematology, pain and sickle cell.


Sickle cell pain; Hospitalization; Emergency room visits; Clinic visits; Pain


Pain is considered a hallmark of sickle cell disease (SCD) and the number one reason for patients to seek medical care. It is defined as “an unpleasant sensory and emotional experience associated with actual and potential tissue damage” [1]. Pain that is not controlled often results in an increase in hospitalizations, and an increased demand for experienced clinicians to treat pain complaints [2]. According to the center for disease control (CDC) [3]; the categories identified for the reasons for hospitalizations are symptoms of the SCD process because sickle cell crisis pain is unpredictable and labile in presentation. Data examined on SCD patients with high use of acute-care services; emergency department (ED) visits and hospitalizations for 2005 and 2006. The data came from States with 33% of the United States (US) population with SCD. There were 109,344 acute care encounters at an overall rate of 2.9 encounters per patient per year for both inpatient and ED visits [4]. Most patients with multiple hospital admissions often do not keep their clinic appointments.


In 2009, the Comprehensive Sickle Cell Centers (CSCC) which had provided care for sickle cell disease patients, was forced to discontinue services because the National Institute of Health funding opportunities had ceased. The Bronx Comprehensive Sickle Cell Centers (BCSCC) in the New York metropolitan area operated for more than 20 years and provided comprehensive services to the patients with SCD. Two of the successes of the CSCC were fewer emergency room visits and less in-patient admissions [5]. Due to the closure of BCSCC, patient care had changed significantly. As a result of the closure, the ED visits and the hospital admissions increased significantly in comparison to outpatient visits. Health care providers were forced to implement an innovative and cost-effective way to improve the management of the patient’s healthcare needs. In an effort to improve pain management and re-establish care in the community a call system was implemented.


To initiate a call system that is a cost-effective intervention that prevents over utilization of services, making care available thus changing behavior of the patients.

Overview of the Call System

The call system may improve the patient’s compliance with appointment management; pain service needs and hematology clinic visits. In addition, the facilitation of communication between clinicians and the patients may be more effective, when the patient is reminded of their scheduled appointments 24 hours before. A call system must be instituted for both new and existing patients. Patients are able to call the Nurse Practitioner (NP) 5 days a week, 12 hours a day with questions about their medications, pain complaints, and disease states. Patients should be encouraged to call the system before going to the ED. When patients call the NP with questions and no one is immediately available, a message system should be function able for retrievable voice messages. The NP returned all calls to discuss the reason for the call and appropriate interventions will be initiated. The telephone number of the clinic, the NP’s telephone numbers including office and pager information will be provided to patients.

Research has reported the use of short message service (SMS) reminder for ophthalmology outpatient appointments which was associated with a reduction of 38% in appointment compared to those who did not receive the SMS reminders in the clinic [6]. SMS text message reminders are effective in reducing the nonattendance rate in outpatient clinics though may not be as effective in all specialties. Yousef et al reported that a rapidly spreading technology in both developed and developing countries have the potential to reach a large number of individuals at a relatively low-cost SMS [7].

Need Assessment

An assessment of the problem was done before the study. It revealed the number of admissions for all patients with sickle cell was n=907, the number of patients with more than four admissions was n=81, from January 1, to December 31 of 2009. The outpatient visits were less than 2 visits per year per patient. There was no outpatient follow up appointments attached to the ED visits. The need to implement a way to communicate with patients in the outpatient setting was urgent. In comparison, after hospitalization, follow up appointments were made but were not kept by patients. Appointment non-adherence is a health behavior concern that represents a burden to the health care systems [8,9]. No-show prevalence rates vary across health care settings and populations. Achieving performance targets and reducing acute care utilization for patients is an increasingly and important goal for the healthcare delivery systems [10]. Patients who often miss their appointment, frequently refer to “no-show” for their outpatient appointments may represent one easily identifiable high-risk group [11]. The use of targeted interventions may be of interest to practices taking on increased accountability for population health [12].

Management of SCD Pain

Clinical Practice Guidelines (CPG) was introduced for the management of acute painful crisis in SCS. It was noted that treatment should be initiated after a rapid clinical assessment until the acute phase of pain is over. This is followed by arranging for necessary outpatient follow-up in the community for continued monitoring and management of pain complaints. The follow-up rates for this population is about five percent. The problems encountered because of no community follow-up, improper management of the disease, under and over treatment of pain, multiple admissions and discharges with increased number of adverse effects of opioids, as well as improper care that is given by multiple clinicians [13]. Maxwell [14], believes a comprehensive, multimodal approach to therapy that includes education, cognitive therapies, anti-inflammatory drugs, and adjuvant therapy are the gold standards of care. In 2014, the National Heart, Lung, and Blood Institute released guidelines for the care of SCD patients, including recommendations for the management of acute sickle cell pain in the ED. These guidelines provide a framework to understand the elements of ideal emergency sickle cell pain care [15]. 


For the purpose of this paper a pre-posttest designed was used to compare patients who maintained follow up appointments before and after the call system was instituted. The participants were randomly selected from the clinic, the in-hospital pain consultation list and from the medicine discharge list. The method of randomization used was an even numerical method in place of the subject’s name in order to ensure anonymity and confidentiality of the subjects. An even number was assigned to each subject starting from an interval 2 to 26. A power analysis was done to determine the sample size. For a power analysis of .80 and a level of significance at p.05, a sample of n = 29 subjects would be needed. However, the project sample size consisted of 12 subjects because of attrition rates. Each participant in this project was identified to have a history of multiple ED visits and low clinic visits. These 2 criteria were significant for this project because they affect both the subject’s pain care and impacted the care cost.


The study took place in a University hospital in the North-East section of the Bronx.

Montefiore Medical Center that provides service to over 1600, patients, from all of its hospitals and outpatient centers. The hospital is one of the largest health care provider system in the Bronx that provide care to the underserve and the diverse population that it serves [16,17]. The pain clinic provides services to the community with focus on the sickle cell patient’s pain care. Nurse practitioners provide one on one care to the patients focusing on a treatment plan that is individualized. The NP believes that building relationships to improve pain quality of care is important for the population. Trust between the clinician and the patient impacts the overall care and treatment compliance.

Data Collection

The data collection was done with the technological use of the electronic medical record (EMR) that included visit history, demographic data, and scheduled appointments. EMR is the computer program the hospital used. The EMR also included detailed information like visit frequency, clinic dates, test results and hospital admissions. The data was collected in 2 phases. The first phase assessed data before the call system initiation and the second phase-collected data during the call system study. Thus a 60-day period with focus on the number of ED visits, clinic visits, and hospital admissions was carried out. Then the data was compared to the 60-day period after the call system was initiated.


The application to the Institutional Review Board (IRB) was submitted to the Medical Center. After approval was granted, patients were recruited according to criteria. A pre and posttest design was used to fully capture the effectiveness of a call system and its impact on clinic visits for the patient with SCD. Pre-study data from January 1, 2009 to December 31, 2009 was reviewed and analyzed. The data focused on patients who were hospitalized with a diagnosis of SCD with a painful event. A number of patients had multiple admissions with prolonged length of stay (LOS) that ranged from 6 days to 100 days. The patients with more than 8 admissions, 60 percent had 1 non-pain clinic visit and 40 percent had no follow up community visit from the Pain and Hematology clinics. The total number of patients hospitalized was 295. Out of that number, 40 percent had a LOS greater than 8 days. The treatment for the painful crisis was opioids, and the patients were discharged with prescriptions for opioids with primary care and hematology clinic follow-up appointments but not with the pain clinic [18].

Implementation Strategies

When the patients are admitted to the hospital and needed pain evaluations, the NP pain specialist sees the patients for management of their pain and evaluation for pain clinic follow-up appointments were completed. For the purpose of the study, the patients were evaluated for the inclusion criteria. Those who meet the inclusion criteria and agreed to participate were given detailed information about the study. The pain NP reviewed the project details with each potential subject. The discussion included: the purpose, the length, and the data collection information. Each participant was provided with the following information; the telephone numbers of the pain NP; office and beeper numbers, the time to call, and the reasons for the call. Each participant was informed that they would be reminded of their appointment via phone calls 24 hours before the visit by the pain NP. The readmissions and ED visits were less than 4 days from discharge date, indicating a need to implement a change in current protocol. The call system may be one such strategy that may improve patient clinic visits and decrease ED and readmission rates.


Cost associated with care is an area of healthcare that is significant and is sometimes compared with quality of care. There are many ways to maintain cost and provide excellent care; initiation of the call system in the pain clinic is a benefit. This service does not incur any additional cost to the institution. Telephone usage, which include making and receiving calls as well as triaging calls are all part of the health care provider’s daily responsibility. The cost comparison of outpatient versus inpatient treatment for adult patients with SCD in one calendar year; $126,420 for seven days patient encounter. Emergency room visits average cost is $820 per visit. The other factors identified are laboratory services and test; diagnostic tests, medications; routes of administration and blood transfusions. An average annual fee for health care for an adult patient with SCD is $231,050 [19].

According to Healthcare Cost & Utilization Project (HCUP), SCD was 5 out of the top 10 super utilizers for Medicaid in 2012 for common principal diagnosis. Hospital stays 33,880 for support utilizers versus all Medicaid patients 59,517. Average days per patient was 5.1 for super utilizers versus 1.4 for all Medicaid patients, average LOS for super utilizer was 6.1 versus 4.7 and cost for super utilizers $11,766 versus $9,423 [20].

Data Analysis

The data was collected and recorded systematically on each participant. The 3 research variables were the number of ED visits made pre and post call system initiation, the number of admissions pre and post call system initiation, and the number of clinic visits pre and post call system initiation. The data pre-call system was compared to the post call system data. A t-test was used to compare the difference between the means of the pre and post call system use, as well as the Wilcoxon Sign Rank test for paired observation.


The findings were as indicated, a p-value of less than .05 was considered statistically significant. The total number of ED visits (n=12) before the call system was 67 visits and during the call system was 34 visits, a difference of 33 less visits. The number of hospital admissions (n=12) before the call system was 26 and during the call system was 14, a total of 12 less admissions. The number of clinic visits (n=12) before the call system was 11 and during the call system it was 26 visits, which is 15 more clinic visits in a 60-day period. The table below shows the time and the frequency of phone calls made during the extent of the project [Table 1].

Table 1: Description of Telephone calls.

Time of phone calls

n= #  calls

made between 7 am and 7 pm by patient


made between 7 pm and 7 am by patient


made on the week end by patient


made to reschedule clinic visit


made to remind patients of clinic appointment by clinician


made to inform of ED visit




There were 18 rescheduled clinic visits during the call system project. The calls made to reschedule the clinic visits were the highest number of calls made by the patients and this was statistically significant. Some reasons for the increase in the number of rescheduling of clinic visits that was made by the patient caused fewer hospital admissions. Other reasons for telephone calls made by the patients included running low on medications, pain complaint that was not controlled on current medications, increased frequency of pain crisis, and lingering pain. There were a total number of n=8 no show clinic visits during the 60-day period because of hospital admissions. Most of the patients called to inform the clinician of the ED visits and some called when they were admitted to the hospital. There was 1 no show visit with no phone call reporting the reason for the no show visit, [Table 2].

Table 2: Table of Summary Statistics.






Difference in ED visits





Difference in Admissions





Difference in Clinic Visits (n=12)






The statistical analysis for the pre-post call system for the difference of ED visits is shown with a Mean of (-2.75). The p-value is (p =.0020) which is less than .05 indicating that the difference from the pre to the post call system is statistically significant. The statistical analysis and p-value for the difference from the pre to the post call system for the number of admissions with a difference of (-0.9167) and can be interpreted as, on average; there were (-0.9167) fewer hospital admissions during the call system compared with prior to the call system. The p-value is (p = 0.0469) which is less than p.05 indicating that the difference from the pre to the post call system is statistically significant.

The statistical analysis and p-value for the difference from the pre to the post call system for the number of clinic visits is noted as a mean difference of (1.25), and can be interpreted as on average; there were (1.25) more clinic visits during the call system compared with prior to the call system. The p-value is (p = 0.0078) which is less than p.05 indicating that the difference from the pre to the post call system is statistically significant.


A team approach was the primary focus during the call system initiative, reminding team members of the importance of the change process and the challenges that accompanies change. These challenges were necessary to work through before the initiation of the call system to improve success, as this evidence-based practice change is important for both the patients and the clinician.

Jenerette et al. [21], noted that most patients who visit the ED have already exhausted home remedies with no pain relief, so they visit the ED when their pain is unbearable. However, because care often continues beyond the ED and more patients are being admitted to medical-surgical units, it is important to understand the care beyond the ED and continuity is important to decrease the frequency of the visits. Telephone calls follow up of older patients discharged from the ED resulted in expedited follow up for patients with their primary care physicians [22].

Convincing the patients and the staff that proper management of pain and optimal pain control should be focused on prevention of unnecessary visits to the acute care setting was imperative. This was not difficult for the staff to understand but some patients verbalized feelings of distrust among the different services: the ED staff, clinics, and the hospital staff. Revision of the call system purpose and its benefits were the focus for all stakeholders with every patient’s encounter.

Many patients continued using the ED for their chronic pain symptoms even when they were aware that the NP was available to communicate over the phone and adjust treatments as needed to avoid unnecessary visit to the ED. The ED clinicians deferred those patients to the pain clinic and appointments were scheduled. Some patients reported multiple reasons for going to the ED that include; running out of prescriptions and uncontrolled pain. Before the call system was implemented, clinicians dispensed prescriptions for opioids but after the call system was implemented prescriptions were dispensed only on the weekend and if their monthly supply was out. These patients will either continue going to the ED or get no prescriptions or was instructed to call the NP to schedule a follow-up clinic appointment. Panepinto et al. [23], identified experiences that the patients face is fragmented care that can further impact longer hospital stay and maybe increase hospital admissions.


This study was undertaken to determine whether a call system for the pain clinic would affect the care of the patients because of a clinician’s practice behavior change. The patients reported optimal care, verbalized that the support they received was unparalleled to the uncontrolled frequent ED care. Receiving a phone call from the NP reminding the patients of their clinic appointment gave the patients hope. In addition, they believed this was a “win, win” situation when the NP is someone they were familiar with and was the same person who cared for them when they were admitted to the hospital.

The gradual transfer of care from the unnecessary use of acute care setting to the community care setting may continue to impact change and the patients will become more tolerant to the change in practice by the NP, thus understanding how their needs may be met if they adhere to the call system. As a result, they will use the acute care setting for acute care problems and the clinic for chronic and nonacute complaints. The pain NP works primarily alongside the ED and medical teams. The ED team will continue to collaborate with the pain NP when the patients visit the ED. The medical team will continue to work with the pain team to discuss and schedule follow up appointments and treatment plans. Getting the clerical and nursing staff involved to schedule and reschedule appointments will be a topic for ongoing negotiation.

Implications for NP

The role of the pain NP was challenging as the impact of change evolved. The workload increased in order to maintain the restructuring of the services. The decrease in the number of ED visits was partly due to patient keeping rescheduled clinic visits because of the telephone call which reminded the patients of their appointments as well as the availability of the NP who return phone calls, and make treatment adjustments in order to have continuity of care and compliance with this call system.

A 30-month assessment by Cline et al. [24], on ED observation, day hospital admissions and hospital admissions for adult patients with SCD, are the focus of healthcare utilization. The author reported that utilization varied dramatically between individual patients. Two cohorts were assessed. One cohort had 5 encounters per month for 30 months. The same cohort had more hospital admissions and ED encounters, while the other cohort had more day-hospital encounters. The admission rates following an acute care encounter was lower for the site that had fewer ED encounters and hospital admissions per patient. One third of patients visited hospitals for acute care outside of their care providers’ institutions.

The need for continued research is warranted in an effort to improve the healthcare for this population with less inpatient visits. Increasing compliance with outpatient specialty may benefit both the hospital and the patients. Compliance with all outpatient specialty clinic visits may influence health care and improve outcomes. According to the pre-call system data, ED visits were high for most of the patients. Getting the patients detach from the behavior of going to the ED with every pain episode before calling the pain NP was imperative and successful. Yusuf et al. [25], stated that the most commonly cited reason for the emergency department visits for the patients with SCD was pain in approximately 78% of patients.

It is important to reinforce the NPs’ role in this process. The patients wanted the reassurance that the NP was available to answer questions if they did not go to the ED. The result shows that there is a statistically significant difference in both the ED visits and the hospital admissions. Despite the statistically significant difference, it creates challenges for this population as well as for the clinicians and healthcare in general because of the labile and unpredictable painful crisis that requires frequent assessments in this patient population. If this call system can work in this community, it may work beyond this community and help the general population.

Empowering other clinicians to embrace evidence-based practice has helped in this changed process and as a result, the changed became infectious affecting the patients’ receptiveness. Clinician’s behavior may also improve patient care. Larrabee and Sions [26], believed that evidence-based practice is the integration of the best evidence with provider experience and patient preferences for treatment alternatives. In addition, the belief that nurse leaders are increasingly motivated to improve outcomes of care through systemic evidence-based practice change was an encouraging force behind this project [27].


It was a challenge to keep track of all the patients’ activities in other hospitals. Some of the subjects in the pretest were not participants in the posttest. The project lasted 60 days, which may or may not be sufficient time to evaluate the long-term effect of the call system intervention. Other limitations are the pain NP was only available 12 hours a day, and was not able to answer phone calls after 7pm.


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