Since the beginning of 2020 and the genesis of the COVID-19 pandemic, there has been much concern about the effects of care disruptions and interruptions. Especially during the early phases of the pandemic, studies showed reductions in outpatient visits and increases in treatment delays or deferrals.1
The pandemic has been an unprecedented event for modern hematologists but is just one example of the kinds of care interruptions that people with hematologic conditions might experience. ASH Clinical News spoke with clinicians about the realities of two types of care interruption – the transition of patients with sickle cell disease (SCD) from pediatric to adult care and transitioning the care of older adults who spend half the year in one state and the other half in another – and how best to deal with them, as well as how to empower patients to participate in their own care transitions.
Growing Up With SCD
Lewis L. Hsu, MD, PhD, a professor at the University of Illinois at Chicago (UIC), is a pediatric hematologist dedicated to the treatment of patients with SCD.
“The two main reasons that patients in my practice are forced to switch providers are changes in insurance and aging out of pediatric care,” said Dr. Hsu, who is also chief medical officer of the Sickle Cell Disease Association of America.
Once viewed only as a disease of childhood, the outlook for patients with SCD has improved, meaning many children will eventually need to transition to adult care. This transition can be complicated, Dr. Hsu said.
When patients with SCD are forced to switch providers because of their age, Dr. Hsu said the predominant issues they face are a lack of adult providers and access to specialized care.
There are about one-third as many adult SCD centers in the U.S. as there are centers for children.2 Additionally, according to the American Society of Hematology (ASH) State of Sickle Cell Disease report, “children with SCD are more likely than adults to receive care in an academic center” compared with adults who “are more likely to receive care in community hospitals, where SCD-specific expertise is much less common.”3
“People can’t just shop anywhere for a physician they like or one who is convenient,” Dr. Hsu said. “There may hardly be anyone who treats adults with SCD in a whole city or region.”
Complications that arise from these care interruptions can vary based on the severity of the disease.
“Patients with milder disease may be falling out of care during their teenage years,” said Julie Kanter, MD, director of the University of Alabama Birmingham (UAB) Adult Sickle Cell Clinic and associate professor in the Division of Hematology and Oncology. “Some patients stop coming because they feel okay. As they enter their late teenage years or their early 20s, though, we often see a spike in vaso-occlusive pain or other complications.”
Interruption in care continuity has also been shown to increase the use of acute care among people with SCD transitioning from pediatric to adult care.4 A retrospective study showed that among 172 patients transitioning care, those who had interrupted care for six months or longer after leaving pediatric care had double the rate of emergency department visits compared to those who completed their first adult visit within six months of leaving pediatric care.
Dr. Kanter said that with the increased attention given to SCD in recent years, most patients are getting “from point A to point B” in their care transitions. How successful that transition may be is another matter.
Caring for Part-Time Residents
For Azam Farooqui, MD, of Ironwood Cancer & Research Centers in Chandler, Arizona, the biggest cause of care interruptions for his patients involves climate and lifestyle.
“Chandler is outside of Phoenix, and locally we have a lot of elderly patients who have a retirement home here where they spend the winter months, and they return back east or north for the summer months,” Dr. Farooqui said. “Patients may do this for the weather, to spend time with family back home, or help with their grandchildren during summer breaks. There are a variety of reasons, but we have a lot of people splitting their year this way.”
Andrew Kuykendall, MD, assistant member at Moffitt Cancer Center in the Department of Malignant Hematology, in Tampa, Florida, can relate.
“We have a large population that comes down [in] September or October and stays through April or May,” Dr. Kuykendall said. “It is notable within the institution – and the city itself – during those periods; the clinical schedule and procedure schedules get quite busy.”
Dr. Kuykendall, who specializes in treating patients with chronic leukemias and myeloproliferative neoplasms, tends to see his patients every three to six months for many years. Although the visits may not be frequent, seeing patients only half of the year can still present challenges.
“A patient may need a change in treatment or dose,” Dr. Kuykendall said. “I may want to initiate a new therapy or monitor a therapy, and that can be challenging to do effectively in a remote fashion, or in conjunction with another busy physician.”
That other physician may be a primary care physician in another state, a community oncologist, or another specialist.
“There can occasionally be issues related to there being ‘too many cooks in the kitchen,’” Dr. Kuykendall said. “I may have an idea of why I am doing something for the patient, but that can be difficult for someone else to understand, especially in cases where [that person] is not a specialist. It may not be that there is disagreement, but patients may feel like they are being told different things, and that can be stressful.”
Dr. Farooqui practices in all areas of adult cancers and hematologic disorders. Some of his patients have simpler hematology diagnoses where he is following their blood counts and the patients only need to get lab work done while they are away.
“I ask them to continue any lab monitoring we are doing and walk them through a list of symptoms to look out for that would prompt me to get the lab work done sooner if they were here with me in Arizona,” Dr. Farooqui said.
There are other patients that he treats who either leave or return in the middle of chemotherapy treatments.
“I have had patients show up and tell me that they are due within the next week for an infusion. That can be challenging,” Dr. Farooqui said, since starting a patient on chemotherapy is not simple and involves obtaining medical records, ordering the treatment, and gathering insurance approvals.
This type of scenario with no communication or advanced planning is often the worst case. Patients may move to a new area without looking for a doctor until they arrive, and that can leave them with fewer options.
How best to set patients and providers up for a successful patient handoff is the million-dollar question, according to Dr. Kanter.
“There are a lot of ways to define it,” she said.
One version of a successful handoff is when a patient with SCD arrives and initiates care in an adult program in a timely manner and continues to engage in care and follow-up. Others may define success for patients with SCD based on the use of acute care services.
At UAB, adult SCD providers try to work hand in hand with the pediatric clinic.
“We see patients in the pediatric clinic before they transition care,” Dr. Kanter said. “There are times when we see a patient once and they are fine for transition. Other times the patient may have acute health issues that need to be resolved or be finishing a life transition and we decide it’s best to keep them in the pediatric setting a little longer.”
The adult SCD team also meets with the pediatric care team to discuss each patient who is of transition age and identify risks or barriers to address before moving to adult care.
However, Dr. Kanter said that many patients she sees at the adult care clinic are already within the UAB care umbrella.
From Dr. Hsu’s perspective, a successful transition for patients with SCD is having access to a provider who they get along with and is covered by insurance. Ideally, that provider also has expertise on the standard of care for SCD.
“There really are so many ways this transition can fall short,” Dr. Hsu said. “Sometimes a patient may find a provider who says they will take on an SCD case, but their practice gets saturated or full and the amount of care coordination that someone with SCD needs can’t be handled.”
For patients with care interruption as a result of relocation, transitions occur more often. Success in these situations is often defined by the quality of planning and communication.
In the case of a hypothetical patient who spends half the year in Michigan and half in Florida, Dr. Kuykendall said he would work to schedule an appointment at his practice within a month of the patient’s arrival in Florida and about a month before the patient returns to Michigan. In successful situations, he would receive a call from the physician in Michigan to get an update on how things went with the patient over the summer and discuss any acute issues that arose.
Dr. Farooqui has a similar outlook and said, “The best scenarios are always when a plan has been laid out well in advance.”
If patients know their schedule in advance, a plan can be made, even in cases where the patient is on active treatment, Dr. Farooqui said.
“As soon as they know they are going to travel, I ask the patient to start selecting a physician immediately. We encourage them to call and schedule an appointment and make sure their insurance is accepted,” Dr. Farooqui explained. “We also look at the timing of their chemotherapy and may ask them to delay their departure a week or two in order to get in a last infusion before they depart.”
In cases where the patient has selected a clinician well in advance, Dr. Farooqui reaches out to discuss the case, because physicians in states with a smaller transitory population may not be as familiar with the care transition process.
Clinicians not only are sending patients out for care at new practices or institutions, but they may be the new providers themselves. In the case of SCD, receiving a new patient requires detailed records of medical and psychosocial history for context.
“We would like to see records that touch on both aspects so that we don’t have to spend tremendous amounts of time to rediscover everything,” Dr. Hsu said. “I want to be able to review lung function tests, head scans, neurocognitive testing, and notes about psychosocial coping.”
A “warm hand off” is also highly desirable, he said, although it only happens about one-third to one-half of the time.
“A phone call would be best, but a cover letter with a summary transition note is also lovely,” Dr. Hsu said.
On the whole, health care is an imperfect system, and it is often not aided by electronic medical records (EMRs).
“There is not a good, consistent system in place for communication and the transfer of records,” Dr. Kuykendall said, agreeing that phone calls are still ideal.
Emailing another provider about a patient is often more work than a phone call. The email must be encrypted and the recipient then has to log in to a system and create credentials to view it.
The transfer of records can be a frustrating process as well. Dr. Kuykendall said this can be an issue with institutions both small and large, with varying processes in place to obtain access to these records. Even in the same health care system, the EMRs between the pediatric and adult centers may not communicate. This means patients’ records are often exported and scanned into a new EMR system with each transition of care.
“Commercial EMR vendors have developed great programs or add-ons that summarize your diabetes care or your cancer care, but that doesn’t exist yet for rare hematologic conditions like SCD,” Dr. Hsu said.
Efforts such as the ASH Research Collaborative Data Hub, GRNDad Registry, and other SCD registry programs that capture continuous patient data could one day help address this issue.
An Empowered Patient
Without good methods of information exchange, patients themselves become the conduit for successful transitions. Patient engagement and empowerment in health care are very important when it comes to care interruptions.
An empowered patient with SCD is one who has an understanding of one’s own health history and medications, and can independently make an appointment or call for a refill, Dr. Kanter said, adding that this is something most 18-year-olds without a chronic condition would likely struggle to do.
Dr. Hsu has worked for more than a decade on how best to ready adolescents with SCD to be empowered patients. Among other things, UIC has an adolescent transition program that serves as a stepping stone to adult care.
“Knowledge is important, and we have included knowledge quizzes to assess how prepared they are,” Dr. Hsu said. “Knowledge does not always translate to behavior for every patient.”
Patients also must learn how to speak for themselves, manage emotions, and communicate even when they are in tremendous pain and not at their best, Dr. Hsu said.
“During acute sickle cell pain that is 10 on a scale of 10, we expect these patients to communicate in a thoughtful way and convey their medical history to a new doctor sometimes after seeing the same doctor for the last 17 years,” Dr. Hsu said.
Research into patient empowerment has shown that although “knowledge” was the most commonly used technique intervention for patient empowerment, it was “not sufficient to empower.” Instead, goal setting or action planning were more likely to be applied in successful patient empowerment inerventions.5
Dr. Kuykendall noted that patients who are educated about their disease are also empowered and that he encounters a lot of very well-educated patients at his practice.
“There is something about chronic leukemias where patients get very educated, read about it, and meet other people with it,” Dr. Kuykendall said.
He strives to prepare patients not only to be educated but to advocate for themselves in their own care. To that end, Dr. Kuykendall provides additional education on the potential for challenges when seeing multiple doctors.
“I know patients have had issues where there are a lot of people involved or they bounce questions off multiple people. That can get confusing in the wrong situations,” Dr. Kuykendall said. “As a patient, you have to understand what the communication is going to be between your doctors, how that communication is going to occur, and how often.”
This communication may be easy if the providers know each other, but it is getting harder for physicians to reach each other if they’re not already acquainted, so it helps when patients can be their own best advocates.
One tool to help facilitate patient self-advocacy is the 21st Century Cures Act, which was signed into law in 2016. The act aims to empower patients by providing better access to information about their care, including information from their medical records.6
“Patients are allowed to do a lot more with their records than we are,” Dr. Kuykendall said. “I make sure my patients know how to access the portal with their labs and records.”
Dr. Kuykendall also stresses to his patients that they should encourage communication between their physicians and double-check that it is occurring. They should ask questions like, “Are you going to call my specialist about these results, or do I need to reach out to say there is a concern?”
Successful transitions of care are possible with good planning and physician-physician and patient-physician communication. At the same time, Dr. Farooqui said, there definitely need to be “research efforts put toward care interruptions and creating systems to make [them] easier.”
- Powis M, Milley-Daigle C, Hack S, Alibhai S, Singh S, Krzyzanowska MK. Impact of the early phase of the COVID pandemic on cancer treatment delivery and the quality of cancer care: a scoping review and conceptual model. Int J Qual Health Care. 2021;33(2):mzab088.
- Nowogrodski A. No adult left behind: bridge the health-care gap for sickle-cell disease. Nature. 2021;596:S13-S15.
- American Society of Hematology. State of Sickle Cell Disease: 2016 Report. Accessed July 12, 2022. http://www.scdcoalition.org/pdfs/ASH%20State%20of%20Sickle%20Cell%20Disease%202016%20Report.pdf.
- Podila PSB, Nolan V, Saulsberry AC, et al. Interruption in care continuity during healthcare transition from pediatric to adult care increases acute care utilization. Blood. 2018;132 (Supplement 1):2226.
- Werbouck A, Swinnen E, Kerckhofs E, et al. How to empower patients? A systematic review and meta-analysis. Transl Behav Med. 2018;8(5):660-674.
- ONC’s Cures Act Final Rule. Empowering patients in the U.S. health care system. May 1, 2020. Accessed July 13, 2022. https://www.healthit.gov/curesrule/final-rule-policy/empowering-patients-us-health-care-system.