The Cancer Supportive Care Model

A Patient-Partnered Paradigm Shift in Health Care Delivery

Elias Anaissie, MD; Tara Mink, RN

Disclosures

J Participat Med. 2011;3 

In This Article

The MIRT Approach

A key goal of the MIRT care model is to foster patient partnership and participation using various strategies (Figure 1 and Table 1).

Figure 1.

Opportunities for Patient-Clinician Partnership

Highly Integrated Care Delivery Model

The MIRT care model provides an integrated care delivery system including continuous patient involvement during and after the administration of anti-myeloma therapy (Figure 2). The MIRT oncologist completes the initial patient evaluation in the clinic and develops a treatment plan in collaboration with the patient. The plan is further discussed with a multidisciplinary team including all MIRT oncologists, pathologists and radiologists with myeloma expertise, a MIRT Supportive Care team of physicians and Advanced Practice Nurses (APN), registered nurses (RNs), social workers, and insurance case managers. Patients may attend the meeting but only during the discussion of their own plan of therapy. The plan is then presented to the patient, who is given an opportunity to further discuss the benefits and risks of alternative options. Once finalized, the treatment plan is communicated to the outpatient supportive care and nursing teams via daily participatory meetings, electronic medical record (EMR) documentation, phone calls, text messages, and emails.

Figure 2.

Patient Flow in the Supportive Care Model.

The MIRT Supportive Care Service consists of 10 physicians and 10 APNs who assume responsibility for executing the plan of care. This service is unique to the MIRT and is directed by a senior physician with dual training and experience in hematology/oncology and infectious diseases (ID), the latter being common complications of cancer therapy and ASCT.

The choice of inpatient versus outpatient therapy is made in collaboration with the patient after discussion of the potential benefits of each approach. Treatment is usually initiated in the outpatient setting unless the patient meets predefined criteria for admission including, but not limited to, conditions requiring close monitoring and/or frequent intravenous treatment, such as severe uncontrolled pain or nausea/vomiting, hemodynamic instability, confusion/mental status changes, spinal cord compression, and others. Outpatient treatment is recommended because it fosters patient-partnered care (Table 2) and avoids the risk for serious hospital-acquired complications.[10]

The Outpatient Infusion Center is critical to the success of the MIRT's strategy. Care is delivered in a state-of-the-art facility staffed by highly trained health care professionals who specialize in the care of patients with MM. The center consists of 14 private rooms and 44 treatment chairs staffed by three physicians (including an ID specialist), 10 APNs, and an RN team who provide care to approximately 140 patients, seven days a week from 7 AM to 7 PM. Local lodging is available within a five-mile radius of the hospital, and MIRT regularly evaluates the hotels it recommends to patients to ensure they meet predefined quality standards.

The Inpatient Unit is reserved for patients who fulfill the predefined criteria described above. It consists of 30 single bedrooms and is staffed by several hospitalists, three ID specialists, a senior hematologist/oncologist/ID specialist, and a team of RNs who provide care to an average of 35 patients per day. Seamless continuity of patient care is accomplished through daily communication of the plan of care between MIRT provider staff via EMR, phone calls, text messages, emails, and two weekly meetings. Upon recovery, patients are discharged home by the MIRT oncologist, and patient care is transferred from MIRT to the patient's local physician with regular followup by three MIRT Phone nurses who have immediate access to MIRT physicians. Regular communication is conducted between the local physician and MIRT clinicians working together as a team to ensure delivery of optimal care.

Patient-partnered Care: The Patient Initiated Quality Improvement Project (PIQIP)

The PIQIP process fosters a partnership between providers and patients to ensure immediate response to patient suggestions for process improvement and was piloted at the MIRT in January 2006 under the leadership of Drs. Thomas Ferguson, Charles Smith, and Elias Anaissie. In Phase I, 12 patient volunteers were asked to keep a daily journal during their care at MIRT and email their experience with recommendations for process improvement (PI) in specific services to Dr. Smith, who would forward them to Dr. Anaissie and the pertinent services for implementation and followup. Subgroups were then formed to develop and implement specific PI projects. Negative patient feedback regarding specific employees was communicated to their supervisors, while employees identified by patients as particularly helpful were publicly recognized with a small gift certificate funded generously by Dr. Ferguson. This public reward system led to improved staff morale and additional receptiveness to the PIQIP.

In Phase II, one-page patient feedback forms were provided to all patients. The forms were collected weekly in locked drop boxes located in the MIRT outpatient areas of care and their findings compiled into a database for Drs. Smith and Anaissie to review. The information provided on the "one-page" forms and the information flow back to the care teams largely mirrored the Phase I approach.

The implementation of the PIQIP contributed to patient empowerment, improved patient-health care worker communications, and provided an avenue for rapid response leading to PIs on patient-identified deficiencies. Examples of successful PIs 'include a reduction in outpatient clinic patient wait time, more timely release of medications from pharmacy to the infusion center, the provision of complimentary snacks, drinks and sandwiches during wait time, and the installation of television and desktop computer stations in the waiting rooms. Additional PIs included posting the café menu daily in the waiting room and the development of campus maps that identify MIRT-specific testing areas and campus restaurants serving warm food.

Open Medical Record Access and MyUAMSHealth Portal System

To overcome the anxiety associated with cancer and to foster patient participation, the MIRT has a longstanding open medical record policy; ie, patients have instantaneous and unlimited access to their own medical records. All patients are educated about this policy and are provided with a copy of the results of their testing and treatment plans after each medical encounter. These results are discussed with patients with emphasis on answering their questions, particularly when results are abnormal and a cause for concern to patients. This policy is also extended to caregivers if approved by the patient. In addition, patients and caregivers can use the secure MyUAMSHealth portal, which allows patients to have immediate online access to their laboratory results (including the physician's correspondence explaining results), schedule a doctor's appointment, pre-register, refill a prescription, and pay their bills. Access to other medical records, such as physician progress notes or radiology results, is not yet available through the portal system and is pending implementation by the UAMS Information Technology staff. Until this becomes available, these results will continue to be provided to patients by their medical team. The MyUAMSHealth portal is heavily utilized, and has had more than 205,000 views by patients since its introduction in October 2009.

Patient Stories

An empowered patient saves the day. On December 27, 2010, a 25-year old male patient with Castleman's disease was preparing to leave his hotel to take a flight home to North Carolina when he accessed the UAMS Patient Lab Portal system and identified significant abnormalities in his laboratory results. These results were still pending during his initial consult with the MIRT oncologist, preceding the decision to initiate therapy under the care of his local physician in North Carolina. Concerned, the patient canceled his flight and returned to MIRT for followup. Upon evaluation, it was determined that these abnormal results indicated a need for immediate initiation of a highly complex treatment regimen, and the patient had an excellent outcome.

Outpatient Therapy and "My Quality of Life." A 75-year old male from London, UK was diagnosed with MM in May 2009. He was treated at a university hospital in London with radiation therapy and was told by his physician that he would also need intensive chemotherapy over several months, most of which will be given in the hospital setting. The patient self-referred to the MIRT in July 2009. Evaluation confirmed that the patient had active disease requiring immediate therapy. The patient discussed his expectations with his MIRT physician, who recommended several months of outpatient intensive chemotherapy followed by two years of maintenance therapy with regular trips to Little Rock. The patient decided to proceed with outpatient treatment at MIRT and received induction with a seven-drug chemotherapy regimen, followed by two high-dose chemotherapies with ASCT and a repeat of the induction regimen without spending a single day in the hospital. The patient achieved complete remission (CR) and remains in CR to date.

The patient had initially expressed strong reservations regarding the receipt of such intensive chemotherapy in the outpatient setting and the need for physical therapy with focus on strength training. Before coming to MIRT, he had been advised in favor of therapy in the hospital and against strength training because of "potential risks for fractures." Following his first outpatient chemotherapy regimen, however, the patient's greatest concern was the development of complications requiring hospitalization because this "would interfere with quality of life" which he was enjoying as outpatient.

Special Provisions to Honor a Child's Wish to "Hit a Good One for Dad." A 40-year old male from Illinois was diagnosed with MM in May 2005 and referred himself to MIRT in August 2008 because his disease was no longer responding to the treatment he was receiving in his hometown and had metastasized to the liver, a very ominous sign usually associated with very short survival. He moved to Little Rock with his wife and their 4-year-old son to undergo MM treatment with the expressed desire to be treated as an outpatient because he wanted to spend as much quality time with his young son as possible. The patient responded well to therapy for more than two years during which he actively participated in raising his son, playing their favorite game of baseball with him. By early 2011, the patient's MM became less responsive to therapy and he expired on the inpatient service in late April 2011. Two days before his death, the patient expressed his desire to watch his son's baseball game because the boy had told him, "Dad, I want to hit a good one for you." The medical team made special provisions to honor his request so he could experience his son's excitement when he did indeed score one for him.

Managing Myeloma Via Email. A 67-year old male from Texas was diagnosed with MM in 1991 and was treated in Houston until March 2003, when he referred himself to MIRT because of disease progression. A physician and a national leader in participatory medicine, the patient received his chemotherapy in MIRT's outpatient unit as he requested. Following his discharge to Texas, the management of his MM was continued via regular email communications, often daily, between the patient and his MIRT physician, with return visits to Little Rock for more intensive therapies when needed. This practice is a model for future patient-physician partnerships in health care, one of many needed solutions for the US health care system.

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