Is the Medical Home for Adult Patients with Sickle Cell Disease a Reality or an Illusion?by Samir K. Ballas, Elliott P. Vichinsky



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ISSN: 0363-0269 (print), 1532-432X (electronic)

Hemoglobin, 2015; 39(2): 130–133 ! 2015 Informa Healthcare USA, Inc. DOI: 10.3109/03630269.2015.1023312


Is the Medical Home for Adult Patients with Sickle Cell Disease a Reality or an Illusion?

Samir K. Ballas1 and Elliott P. Vichinsky2 1Department of Medicine, Cardeza Foundation, Jefferson Medical College, Thomas Jefferson University, Philadelphia, Pennsylvania, USA and 2Research Center, Benioff Children’s Hospital Oakland, Oakland, California, USA


Recently, the patient-centered medical home (PCMH) emerged as a viable method to improve delivery of medical care. Due to all the promotion about the effectiveness of the PCMH, patients with sickle cell disease, their families and the community hoped that this could be a possible solution to the problems that arise in the treatment of adult patients with sickle cell disease. Review of the literature and review of the criteria for the establishment of a PCMH show that the PCMH is not an ideal model for patients with sickle cell disease because finding a personal physician, which is the first criteria of a functional PCMH, is a major problem in the process of transitioning the care of patients with sickle cell disease from pediatrics to adult care.

Moreover, garnering hospital support to defray the initial costs to establish a PCMH for adults with sickle cell disease is unlikely given the already high costs of care for patients with sickle cell disease. Moreover, recent studies have shown insufficient evidence to determine the presumed beneficial effects of the PCMH, especially in patients with chronic disease.


Medical home, patient-centered medical home (PCMH), sickle cell anemia, sickle cell disease


Received 25 August 2014

Accepted 10 November 2014

Published online 25 March 2015

The majority of adult patients with sickle cell disease are forced to become medical ‘‘nomads’’ within a complex system. Discrimination based on ethnicity, socioeconomic status, opioid utilization, frequent necessity for acute medical care, and poor insurance coverage create a hostile medical environment that pushes patients to drift from hospital to hospital, and emergency department (ED) to ED. This often results in providers in their community stigmatizing these ill patients as drug-seekers, addicts, frequent flyers, etc. (1,2).

Their journey through this intricate maze of a system in search of an oasis of empathy is almost always in vain.

This conundrum of adult patients with sickle cell disease, their families, their providers and the community are desperate for a radical change. Any new concept, idea or program sparks hope for a solution. Within this state of affairs the concept of the Medical Home emerged. Almost immediately it triggered hope for a remedy for the chronic care of patients with sickle cell disease. Is the ‘‘medical home’’ model a true solution for sickle cell disease, or just a false hope born out of desperation?

The term ‘‘medical home’’ was first introduced in 1967 by the Council on Pediatric Practice of the American Academy of Pediatrics (AAP) (3). The AAP focused on the creation and implementation of the medical home in the 1970s and as a result, all the AAP chapter presidents were requested to create a child health plan for their state (4). Dr. Steve Edwards suggested the creation of a medical home to the North

Carolina state legislature in 1978, but the idea was negatively received due to lack of clarity as to what constituted a medical home and hence was not signed into law (4). The concept of a medical home did not arise again until 1980, when Dr. Calvin

Sia, from Honolulu, Hawaii, led a campaign to have the concept that ‘‘every child deserves a medical home’’ included in the Hawaii Child Health Plan (4). He was successful in his efforts, which led to the discussion of how a medical home could become a viable mode of medical treatment (4). The prevailing view at the time was that ‘‘a medical home would be family centered; community based; offer continuity, comprehensive, and coordinated care; and use the resources of related services of the area’’ (4).

Initially, the concept of the medical home was geared towards pediatric care but it is now viewed as a model for patients of all ages (5). The name, therefore, was changed and is now commonly referred to as the patient-centered medical home (PCMH) (6). The general broad definition of PCMH is that it is a method of providing comprehensive and continuous care to children and adults by a team of physicians; the emphasis is on care coordination and communication to change primary care so that the patients and their families are not passive participants but active partners in their care (7,8). A successful PCMH would enrich

Address correspondence to Samir K. Ballas, M.D., F.A.C.P., Department of Medicine, Cardeza Foundation, 1020 Locust Street, Philadelphia, PA 19107, USA. Tel: +865-745-6380. Fax: +865-795-0809. E-mail: the experience of patients and providers, lead to higher quality of care and reduce costs. Moreover, the goals of the program would be supported by external payment reform designed to enhance the delivery of quality care. The American Academy of Family Physicians, AAP, American College of Physicians, and American Osteopathic Association released a joint statement in 2007 indicating the seven principles of the

PMCH (6). These seven principles are as follows: 1) Personal physician: ‘‘Each patient has an ongoing relationship with a personal physician trained to provide first contact, continuous and comprehensive care.’’ 2) Physician-directed medical practice: ‘‘The personal physician leads a team of individuals at the practice level who collectively take responsibility for the ongoing care of patients.’’ 3) Whole-person orientation: ‘‘The personal physician is responsible for providing for the entire patient’s healthcare needs and taking responsibility for appropriately arranging care with other qualified professionals.’’ 4) Care is coordinated and/or integrated ‘‘across all elements of the complex healthcare system (e.g., subspecialty care, hospitals, home health agencies, nursing homes) and the patient’s community (e.g., family, public and private community based services). Care is facilitated by registries, information technology, health information exchange and other means.’’ 5) Quality and safety ‘‘are hallmarks of medical home by incorporating a care planning process, evidence based medicine, accountability, performance measurement, mutual participation and decision making.’’ 6) Enhanced access ‘‘to care is available through systems such as open scheduling, expanded hours and new options for communication between patients, their personal physician, and practice staff.’’ 7) Payment ‘‘appropriately recognizes the added value provided to patients who have a patient-centered medical home beyond the traditional fee-forservice encounter.’’