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Patient-centered care ideal for primary immune deficiencies
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HOUSTON — Primary immune deficiencies affect approximately 500,000 people in the United States, according to the National Institute of Allergy and Infectious Diseases.
To help physicians manage these patients, experts discussed the importance of patient-centered care, medical complications associated with primary immune deficiencies, and tips for how to communicate with patients who have these conditions during a symposium at the American College of Asthma, Allergy & Immunology Scientific Meeting.
Patient-centered health care
Mark Ballow, MD, a professor of pediatrics in the division of allergy and immunology at the University of South Florida, explained that patient-centered care is a “partnership between the patient and the provider in which the provider considers more than just the disease entity, but [the disease entity’s] impact on the patient and, of course, including the patient’s perspective and preferences as well.”
One important consideration for patient-centered health care is the burden of treatment and how it could impact the patient’s quality of life. Ballow explained that physicians should consider the time and effort that patients make to attend medical visits, undergo testing, manage treatment, and adjust to the lifestyle changes that are necessary to accommodate their treatment.
He noted that studies have found that patients had significant improvements in quality of life and were more satisfied when given subcutaneous immunoglobulin at home rather than IV immunoglobulin in the hospital.
“Patient satisfaction leads to adherence, and that’s important,” he said.
Medical complications
Kenneth Paris, MD, MPH, associate professor of Louisiana State University Health Science Center, presented slides from Alexandra Freeman, MD, director of the primary immune deficiency clinic of NIAID, about medical complications associated with primary immune deficiency diseases, including:
- bronchiectasis;
- immune dysregulation;
- long-term antimicrobial use;
- infection “quirks,” like Helicobacter bacteremia with cellulitis/osteomyelitis; and
- difficulties with surgical management, such as long-term steroid use and difficulty healing.
“Medical management of individuals with primary immune deficiencies is complex, obviously, and immune dysregulation that is seen in those patients is difficult to recognize and is constantly evolving,” Paris said during the presentation.
He noted that as researchers find genetic etiology for more patients with these diseases, therapy becomes more precise, which should prompt physicians to take advantage of medications new to the treatment of primary immune deficiencies, such as abatacept (Orencia, Bristol-Myers Squibb) and sirolimus.
Patient communication
Richard L. Wasserman, MD, PhD, medical director of pediatric allergy and immunology at Medical City Children’s Hospital, discussed tips for communicating with patients with primary immune deficiencies, including maintaining eye contact, keeping communication simple, listening to and acknowledging patient concerns, and being truthful.
When talking to patients recently diagnosed with primary immune deficiencies, he recommended briefly explaining host defense, telling the patient the specific name of their disorder, and describing how the disease relates to the individual patients’ history and what they should expect from their diagnosis.
Wasserman also noted that it is important to be truthful; however, physicians do not need to tell patients everything about their condition. In addition, he said that while physicians should inform patients about all the treatments available to them and how their diagnosis will impact their lives, physicians do not necessarily need to discuss increased risk for cancer, autoimmunity, or anti-IgA antibodies unless they are specifically asked.
“When something comes up, there will be plenty time to talk about that,” Wasserman said. “Getting into those issues at this point does two things: it creates unnecessary fear, and it distracts from the important information that will help them cope with their diagnosis.”
He also noted that shared decision-making for treatments is important, as it helps patients understand their treatment and how it will impact their life. – by Erin Michael
References:
Ballow M, et al. Primary immune deficiency: Optimal care for optimal outcomes. Presented at: American College of Asthma, Allergy & Immunology Scientific Meeting; Nov. 7-11, 2019; Houston.
NIAID. Primary Immune Deficiency Diseases. https://www.niaid.nih.gov/diseases-conditions/primary-immune-deficiency-diseases-pidds. Accessed Nov. 12, 2019.
Disclosures: Ballow reports serving on the advisory board for Baxter, CSL Behring and Grifols, and the data safety monitoring board for CSL Behring, Glenmark Pharma, Green Cross and Prometic. He also reports being a speaker for Baxter and CSL Behring as well as the consulting medical director of the Immune Deficiency Foundation. Freeman reports no relevant financial disclosures. Wasserman reports being an investigator for CSL Behring, Kedrion, Korean Green Cross, Prometic, Takeda, and TherapureBio, a consultant for Korean Green Cross, Takeda, and TherapureBio, and a speaker for CSL Behring and Takeda.