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Experts emphasize the fundamental principles of integrative care, the success seen in treating rare diseases, and how it can be applied to all chronic diseases.
The importance of an integrative approach for patients living with chronic disease has been evident as it gains momentum across various healthcare specialties. With many rare diseases persisting as chronic conditions, these patient populations must learn to assimilate their care into their lifestyle.
The role of multidisciplinary teams, shared decision-making, and ongoing efforts to address unmet needs in the pursuit of optimal patient care has been addressed by experts from a variety of rare specialties to HCPLive. Chronic diseases have a broad impact not only on the individual but also on their wider circle of caregivers and family members, friends, and other aspects of life such as work and leisure activities.
"How do we create the entire spectrum of care for individual patients so that they can be managed, whether they have a chronic disease or their primary health needs to be managed?" Edward Ivy, MD, MPH, Vice Chief Medical Officer, Sickle Cell Disease Association of America (SCDAA), said in an interview with HCPLive.1
Integrative healthcare refers to an approach that combines conventional medicine with evidence-based complementary therapies to address the physical, mental, and emotional wellbeing of patients. Existing care centers within the rare disease community serve as prominent examples of both the need and the success of practicing integrative care.
The implementation of integrative care varies but certain foundations are widely accepted2:
Based on experience treating patients with hemophilia, Young believes the multidisciplinary care approach is crucial.3
“For chronic diseases that often affect more than one system that often may result in impacts that are both economic and psychosocial, having a multidisciplinary team like we do in hemophilia is really critical,” he shared. “In hemophilia, we have physicians, specialized nurses, and then we have physical therapists to help us with the physical impacts—we have social workers and psychologists to help us with the psychosocial impacts, social workers to help us with the work-related and family-related impacts.”
Young spoke about the impact shared decision-making can have on patient care and outcomes, with many physicians agreeing on this approach. He emphasized the necessity of shared decision-making when discussing new therapies with patients.
In the interview with HCPLive, he was specifically referring to the recent US Food and Drug Administration (FDA) approval of Roctavian (valoctocogene - roxaparvovec-rvox) gene therapy for the treatment of severe hemophilia A in adults—which denoted a significant breakthrough in treatment as the first gene therapy approved for the rare disease in the US.
“Shared decision making is a process whereby we inform patients of their options, discuss the pros and cons, understand where they're coming from, not just what they're looking for in a treatment and their values, but also their appetite for risk,” Young said. “Then together, we make a decision on what would be best for them.”
With new interventions like gene therapy, patients must accept some long-term risks as the effectiveness and safety of the treatment in the distant future remain uncertain. Some patients are early adopters who view gene therapy as a potentially life-changing opportunity and are willing to take on the associated risks. On the other hand, he explained, there are patients who feel nervous about receiving a novel treatment.
Ragni highlighted the importance of patient engagement and the expertise of individuals who have lived with the disease, emphasizing the need for their involvement in research and decision-making processes.4
“We're more and more listening to the patient, we cannot move forward without them, absolutely, hand in hand, from the beginning,” Ragni, said. “If they are not engaged–if we're not working with the lived experienced experts–we are missing the target, we are missing the whole game because they know what they've lived through, they know what they want, they know what they're not going to put up with.”
While discussing the FDA decision in an interview, Ragni emphasized the significance of listening to the patient perspective and involving them from the beginning in research and decision-making processes.
She also expressed excitement about the current efforts of the medical and scientific advisory committee that helps to set policy and guidelines through the National Hemophilia Foundation. The committee is actively working on guidance for both physicians and patients with regard to gene therapy and liver health in community engagement and community voices.
Integrative models like this improve adherence and compliance, which is particularly critical among patients with SCD. Fasipe told HCPLive that shared decision-making between patients and healthcare providers is a driving factor in treatment adherence.5
“Being cognizant of the burden of what it means to get therapy is important,” she said. “I think adherence is multifactorial, on the understanding part of the individual, there should always be, what we call, shared medical decision making, meaning the patient has the power to listen to their provider, hear the various options, and together work on a plan that works because when patients have ownership in that plan, they're more likely to adhere to it.”
Great advancements have been made in hematology, and specifically in sickle cell disease care contributing to better healthcare access and the development of more robust medical homes.1
Ivy explained the term "medical home" is a concept where patients have an understanding of their disease and actively participate in managing it with guidance from their healthcare providers who can share the knowledge and skills necessary to treat the disease effectively.
“If you can create an effective relationship there, then that could lead to improved outcomes,” Ivy said. “But we know that that relationship happens in an environment–there are regulations, there is insurance, there are other factors that play a role in that relationship.”
What can HCPs and patients do in order to achieve this?
“That’s the medical home model. And then what emerges from that is called a medical neighbor,” Ivy explained. "We need to look at a map of the medical neighborhood model that helps us treat the whole patient.”
He continued, “I'm happy to say that there has been a lot of progress made at the national level, in sickle cell in particular, to develop models that allow hematologists to more effectively connect to primary care providers and get that information."
Within the past year, findings illuminated the nuance around addressing the sickle cell trait (SCT) and the impact it can have on a patient and their future family. A study evaluated the awareness and perceived competence of healthcare practitioners (HCPs) in diagnosing SCT after newborn screening.
Lead investigator Schultz discussed how the conversation needs to continue beyond the initial screening results indicating SCT with HCPLive. Her investigation suggested HCPs knew it needed to be addressed with caregivers, but lacked the understanding or confidence as to what that involves.6
"They're often discussing just that the child has sickle cell trait, and not necessarily talking about inheritance patterns, or potential medical complications, or reproductive decision-making in the future," Schultz explained.
"We (as physicians) know we should say the words,” she continued, “but not necessarily knowing that there are medical complications that can come with sickle cell trait, or how to answer questions about those, or where to direct people to if they wanted more information.”
Rare chronic diseases have wide-ranging impacts, not only on individuals but also on their support systems. Experts acknowledged the significance of patient-centered care, collaboration among healthcare professionals, and the personalization of treatment plans based on unique patient needs and circumstances.
According to interviews with these experts, the integration of evidence-based conventional medicine with complementary therapies was recognized as a core aspect of integrative healthcare. Additionally, promoting health, preventing illness, and addressing the mind-body connection were underscored in the approach.
By considering the individual needs and perspectives of patients, HCPs can enhance treatment adherence and overall patient outcomes in the pursuit of optimal care.