By Marcia Frellick

BARCELONA, Spain — For patients with primary immunodeficiency disease, information about daily routines and relationships can help determine whether an intravenous or subcutaneous regimen is best for the lifelong immunoglobulin replacement therapy typically required to prevent recurrent infections.

Clinicians should ask patients about work hours, school activities, and how much family support they have, said Joris van Montfrans, MD, PhD, a pediatric immunologist at Wilhelmina Children’s Hospital, University Medical Center, in Utrecht, the Netherlands.

He described his diagnostic consultation process during a satellite symposium here at European Society for Immunodeficiencies 2016 Biennial Meeting.

First, Dr van Montfrans said, he informs the patient of the diagnosis and treatment options, without recommending one regimen over the other. He then checks whether the patient understands the treatment options and answers any questions the person has.

“Preferably, I let patients reach their own decisions on what treatment modality to choose,” he explained.

 Preferably, I let patients reach their own decisions on what treatment modality to choose.
During the symposium, he asked the few hundred members of the audience — who were equipped with a smartphone response tool — who should make the final treatment decision. Results showed that 79% said it should be a combined decision between the doctor, patient, and family members; 7% said the doctor alone should make the decision; and 14% said the patient and/or a family member should make the decision.

At Wilhelmina Children’s Hospital, interviews about lifestyle and preferences are typically conducted by nurses trained in primary immunodeficiency disease, who have time for in-depth questioning, Dr van Montfrans reported.

“I request the information, but I don’t need to interview these patients myself, so my personal workload does not preclude getting this done,” he said.

Treatment preferences change continually as life circumstances change, said Emily Carne, an advanced nurse practitioner at the University Hospital of Wales in Cardiff, United Kingdom, who conducts such interviews as a clinical nurse specialist.

“Every opportunity you have to speak with a patient, you ask if it’s going okay,” she said.

Intravenous vs Subcutaneous Therapy

In the consultation room, some treatment decisions will be dictated by the patient’s condition, clotting risk, or reaction to intravenous products, she explained, but some will depend on what adverse effects are acceptable to the patient.

“One patient who has a relatively minor headache with intravenous administration may absolutely detest the itching at the site of subcutaneous injection,” Carne pointed out. “We really have to listen to what affects patients the most.”

And a big consideration is whether they can give themselves subcutaneous infusions, she said.

Carne also asks about the home environment. Do patients want to keep their children out of the picture when they undergo treatment? Is the environment clean? Is the atmosphere chaotic?

The cognitive ability of the patient to take on home treatment should be assessed by the clinician, as should access to transportation to treatment centers.

In addition, patients’ relationships should be addressed.

In one case, she reported, the patient blamed the spouse for failed cannulation, which led to a discontinuation of treatment and almost to divorce. “You have to drill into relationships and support the spouse as well,” Carne said.

Although the interactions described during this symposium “are very positive, the reality is a little worse,” said Reinhold Schmidt, MD, director of the Department of Immunology and Rheumatology at Hannover Medical School in Germany.

Most clinicians don’t have the time to conduct such in-depth interviews, he told Medscape Medical News. Nurses and doctors already strain to convey the necessary information in short appointments, he added.

This satellite symposium was sponsored by Shire. Dr van Montfrans, Ms Carne, and Dr Schmidt have disclosed no relevant financial relationships.

European Society for Immunodeficiencies (ESID) 2016 Biennial Meeting. Presented September 22, 2016.