Abstract

Summary: A cancer program specialized in treating patients with multiple myeloma developed a participatory care model. Various strategies were used to foster patient participation, including a) partnership in care management (treatment decisions and location of care; eg, hospital or outpatient unit), b) significant caregiver involvement (family and friends), c) patient/caregiver education and networking, d) emphasis on therapy in the outpatient setting, e) patient self-administration of intravenous and subcutaneous medications , f) a patient-initiated quality improvement program, g) an open access medical record policy and online access to test results, and h) uninterrupted access to program clinicians, even after discharge to another city or state.

An independent evaluation indicates this program is a US leader in the field of outpatient cancer therapy. This care model is well received by patients, caregivers, health care workers, and the hospital, and it is associated with superior clinical outcomes.

Broadly applied, this model could lead to a changing paradigm in health care delivery with major benefits to patients and lower costs for health care in the US.

Keywords: Cancer, supportive care, patient-partnered care, patient participation, open medical record policy.
Citation: Anaissie E, Mink T. The cancer supportive care model: a patient-partnered paradigm shift in health care delivery. J Participat Med. 2011 Jun 10; 3:e26.
Published: June 10, 2011.
Competing Interests: The authors have declared that no competing interests exist.
 

This manuscript is dedicated to Thomas Ferguson, MD, a pioneer in patient participation who coined the term “e-patient” to describe individuals who are educated about and engaged in all decisions related to their health. Dr. Ferguson envisioned a health care delivery system built on an equal partnership between e-patients and health professionals and systems that support them.[1] Before Tom’s untimely death in 2006, he was putting the final touches on the White Paper in consultation with the group of advisors he dubbed the e-Patient Scholars Working Group.[2] His vision continues to guide the authors in their quest for a patient-partnered health care delivery system.

Introduction

The authors describe a model of health care delivery for patients with multiple myeloma (MM) in which the patient is a partner and active participant, rather than a mere recipient of care. The authors compare this model to the care provided at various national institutions and report the positive results achieved using this participatory care model. Finally, the authors propose that the application of this model to other medical conditions has the potential to positively impact not only patient outcomes but also the cost of health care delivery.

Indeed, the cost of US health care continues to soar, with negative implications for the economic health of the country.[3] Attempts to curb costs are now focused on rationing health care as done in the UK, including cost-benefit analyses of drugs and procedures by expert commissions, use of generic medications, and emphasis on primary care physicians for every citizen. These measures, however, did not prevent the doubling of the cost of the British health care system[4] and have been associated with poorer outcomes; for example, the survival of patients with breast cancer treated in the UK is substantially lower than their US counterparts.[5][6] Medicare has also recently instituted a system of penalites when certain benchmarks are not met (eg, as of October 1, 2008, Medicare no longer pays for what it considers “never events,” ie preventable inpatient complications including pressure ulcers, falls, trauma, and others).[7][8] Moreover, the latest health care overhaul was proposed without significant input from patients. Without buy-in from all stakeholders, even a great design can be doomed to failure. Fortunately, many patients have taken the initiative to become better informed and to participate in making decisions about their health, a move facilitated by the widespread access to credible online medical resources. But provider support for this important patient-initiated participation process is limited.

Multiple Myeloma

Multiple myeloma (MM) is a disease primarily affecting the older population with a median age of 62-73 years, with 15,000 new cases per year in the US alone.[9] Major treatment advances in MM have occurred over the past two decades, including the introduction of novel agents and application of high-dose chemotherapy (HD) followed by autologous hematopoietic stem cell transplantation (ASCT).[9] Typically, HD-ASCT causes profound suppression of hematopoiesis leading to increased risk for infection and is usually performed in the hospital setting until hematopoietic recovery (approximately 21 days).[10] Despite these treatment advances, patients with MM receiving therapy suffer various complications as a result of the interaction between three factors: 1) The disease, which increases the risk for infection, renal failure, symptomatic anemia and fractures causing severe pain and decreased mobility[10]; 2) the treatment given to reverse these complications and extend survival but which may cause severe diarrhea, nausea, vomiting, infections and other complications; and 3) the older age of this population which puts them at risk for hospital-related complications such as infections, muscle wasting, malnutrition, depression, a sense of isolation, frailty, delirium, and others.[10][11]

Disempowerment and loss of dignity

Patients with a life-threatening condition such as MM experience a loss of control over their lives. This feeling is compounded by confinement in a hospital, where staff shortages and cost-cutting measures may interfere with a timely response to their basic needs such as calls for toileting, pain control, and others. These unmet needs leave patients with a feeling of loss of dignity.

The Myeloma Institute for Research and Therapy (MIRT)

MIRT was established by Dr. Bart Barlogie, a world-renowned expert in MM with the goal of improving patient survival, at the University of Arkansas for Medical Sciences (UAMS) in Little Rock, Arkansas. The MIRT Supportive Care Program was developed to further improve outcomes by fostering active patient participation in the treatment process, including the prevention of prolonged hospitalization and hospital-associated complications.

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.

Table 1: Patient and Caregiver Participation: The Focus of the MIRT Approach to Care Delivery.

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.

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]

Table 2: Patient – Partnered Care: Benefits of Outpatient Therapy vs Hospitalization.

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.

Figure 2: Patient Flow in the Supportive Care Model.

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 57-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.

Impact

Superior Patient Outcomes

The development and implementation of the Supportive Care Model have shown that therapy for MM can be safely delivered using this strategy. Indeed, the outcome of patients with MM treated at the MIRT has been consistently shown to produce superior outcomes in terms of patient survival and disease control.[9][12][13]

Independent Evaluation

An independent data analysis conducted by the University HealthSystem Consortium in January 2010 concluded that MIRT is the national leader in the paradigm shift from an inpatient to an outpatient model of care, and in which patient participation is strongly emphasized. “We have been able to find out that Arkansas’ program is truly unique. Arkansas’ percentage of bone marrow transplant (BMT) outpatients is the highest by far [see Figure 3]….In addition, because you are unique, UHC’s models do not give you the credit you deserve for the severity of your inpatients.[14]”

Figure 3: Percentage of MIRT Outpatients Requiring BMT.

This patient-clinician partnership has been well received by patients, their caregivers, and the treatment team because it fosters patient empowerment and active participation in the decision process throughout therapy. The Cancer Supportive Care model continues to be actively used at MIRT and the authors believe this model can be easily and safely expanded beyond the elderly population with cancer to other patient populations. Shifting patient care from the inpatient to the outpatient setting is expected to improve the overall patient experience by fostering patient empowerment, comfort, convenience, reduction in length of hospitalization and decreased overall cost to the patient and provider.

Barriers to Implementation

Identified barriers to implementation of the Cancer Supportive Care Model were limited to initial physician/patient reluctance, logistical (including space limitation and geographical contiguity of patient care areas) and technical (EMR). The latter two barriers interfered with the continuity of care during patient transition between various MIRT patient care areas.

The initial physician and patient reluctance were overcome through education based on actual MIRT outcome data including improved survival with similarly treated patients[9][12][13] and through patient networking. Indeed, patients are now more reluctant to be hospitalized even when their condition is deemed to require hospitalization on the basis of MIRT’s research and standards of care. The completion of the Winthrop P. Rockefeller Cancer Institute in 2010 allowed relocation of all MIRT outpatient treatment areas into one state-of-the-art facility, hence eliminating the logistical barrier. Adapting the outpatient EMR to the inpatient unit improved communication during patient transition between various MIRT areas of care and hence the continuity of care. This project was developed through a collaborative effort with the UAMS Information Technology EMR team including weekly meetings to build documentation forms, flow sheets of medication administration and laboratory results, quick-texts (automatically populated standardized but editable texts), toxicity grading forms, patient education material, and others.

Conclusion and Future Direction

The MIRT model of health care delivery relies on active participation of patients and their caregivers. This model is effective, benefits patients (see Table 1), caregivers, health care workers, and hospitals, and will reduce costs because the cost of outpatient therapy is much lower than that provided in the hospital.[15] Hence, the MIRT model’s emphasis on outpatient therapy and patient-partnership will undoubtedly impact health care costs by reducing the need for 24 hour staffing and maintenance of inpatient units, decreasing the rate of expensive hospital-acquired complications[10][11] and the need for large capital investments for hospital expansion.

Applying the MIRT model to other medical conditions and settings will face challenges because it requires a change in the “health care culture” from one driven by health professionals and systems to one which embraces active patient participation. The major issues now facing the US health care system represent a unique opportunity to embrace such a paradigm shift. It will also be critically important to educate students in training about the powerful impact of patient partnership on health care outcomes.

MIRT’s program will continue to strive for excellence in patient care through partnership with patients to identify and implement novel strategies such as the use of a MM-specific smart-phone application, which will allow patients direct downloading of their test results, as well as the broader implementation of patient/physician electronic communications and the adaptation of novel technologies that enable remote electronic monitoring of vital signs, cardiac, and respiratory functions. These measures will likely further encourage patient participation in their care and decrease the frequency of the need for visits to MIRT’s health care facility and, hence, enhance patient comfort, convenience, and satisfaction with the care delivered.
 

“…[When patients] participate more actively in the process of medical care, we can create a new health care system with higher quality services, better outcomes, lower costs, fewer medical mistakes, and happier, healthier patients. We must make this the new gold standard of health care quality and the ultimate goal of all our improvement efforts:
Not better hospitals,
Not better physician practices,
Not more sophisticated electronic medical systems,
Happier, healthier patients.”
–Charles Safran

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13. Barlogie B, Anaissie E, Haessler J, van Rhee F, Pineda-Roman M, Hollmig K, Alsayed Y, Epstein J, Shaughnessy JD Jr, Crowley J. Complete remission sustained 3 years from treatment initiation is a powerful surrogate for extended survivalin multiple myeloma. Cancer. 2008 Jul 15;113(2):355-9. ↩
14. Meurer S. Length of stay for multiple myeloma patients having bone marrow transplant as inpatients at University of Arkansas for Medical Sciences (UAMS) medical center: an analysis of the UHC CDB data. [PowerPoint slides], University HealthSystem Consortium, January 2010. ↩
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Copyright: © 2011 Elias Anaissie and Tara Mink. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.