BARCELONA, Spain — Communicating effectively with young patients and their families as they face chronic conditions, treatment burdens, and developmental milestones is as important as diagnostic accuracy and prescribing the correct therapy, experts agreed at the European Respiratory Society (ERS) 2026 International Congress. “Excellent care is shaped truly by the conversations we have, not just by the diagnosis we make,” said Deepa Patel, MBChB, clinical lead for the Primary Ciliary Dyskinesia (PCD) Management Service at University Hospitals of Leicester, Leicester, England.

When a family receives a new diagnosis of a chronic suppurative lung disease, such as PCD or noncystic fibrosis bronchiectasis, clinicians must help them see a manageable future rather than focusing solely on irreversible damage, she said. “This is part of their life but should not take over their life.”

Difficult interactions with parents or teenagers in the consultation room can be challenging, but understanding the underlying emotion can help resolve conflict. “If there is some aggression during the conversation, often there is fear behind the aggression,” Bernhard Schwerk, MD, pediatric pulmonologist at Hannover Medical School, Hanover, Germany, told Medscape Medical News. “If families or even children are not able to understand what you are doing, some of them react with aggression.”

Dominic A. Fitzgerald, MBBS, PhD, pediatric respiratory and sleep physician at The Children’s Hospital at Westmead in Sydney, Australia, agreed, adding that conflict often reflects a loss of control. “For families and for children, [the diagnosis] can be quite confronting,” Fitzgerald said.

Shared Decision-Making Under Uncertainty

When caring for children with complex or rare respiratory conditions, clinicians sometimes need to make diagnostic and treatment plans with limited evidence or high clinical uncertainty, said Schwerk.

In these scenarios, shared decision-making is not simply about giving parents a list of options, nor is it about offloading medical responsibility or uncertainty onto the family, he explained. It also does not mean remaining neutral when families explicitly seek professional guidance, he said. “My recommendation in this very, very difficult conversation with the parents is to be transparent and honest in transporting this uncertainty and talking about what we do know and what we do not know.”

According to Schwerk, shared decision-making in the face of uncertainty requires:

• Transparency: Clearly communicating what is known and what remains unknown
• Offering balanced options: Discussing potential benefits, risks, and the implications of nonintervention
• Understanding family goals: Exploring the family’s expectations, fears, and lived experience
• Collaborative recommendations: Synthesizing clinical evidence, medical expertise, and family values into agreed-upon next steps, with early re-evaluation to reassess progress.

“The most important thing is to re-evaluate very early — that means to review, to reassess, and to adapt if the steps are not successful for the next time,” Schwerk added.

From Diagnosis to Transition

As children grow, their understanding of their condition evolves, and the nature of clinical interactions must adapt accordingly, said Patel. She suggested taking a child-centered approach to the visit. Starting annual review consultations directly with the child builds self-advocacy over time, she said. “When I start my PCD annual review clinics, I actually turn to the child: ‘So why did you come to see me? What do you understand about your condition? And let me help you fill your gaps,’” Patel explained. “By the time they hit adulthood, they become self-advocates.”

At age 6, questions might be directed primarily to parents. By age 15, consultations focus on the adolescent’s direct questions, their autonomy, and how treatment fits into their daily life. If treatment adherence is poor, for example, clinicians might shift from questioning the “why” to understanding the difficulties. “My first question is no longer ‘why aren’t you doing it?’ but ‘What have we failed to understand about how treatment fits into your life?’” Patel said.

At the PCD Management Service at University Hospitals of Leicester, transition to adult services is a continuous multi-year process rather than a single event. Structured transition programs that start around age 14, introduce adult care teams early, and gradually transfer care ownership significantly improve patient engagement and prevent drop-off in adult clinics. Research indicates that if young adults do not have a follow-up appointment within the first 3 months in adult services, the risk for disengagement rises sharply, Patel explained.

Personalized Triggers and Remedies in Asthma Care

In childhood asthma management, generic allergen-avoidance checklists are increasingly being replaced by personalized environmental histories. “Really what we’re after these days is knowing what the child is actually exposed to, rather than more generic advice,” said Fitzgerald. “We need to specifically ask about exposure, and we need to promote specific remedies for the problems the family have.”

According to Fitzgerald, key environmental management strategies include asking specifically about indoor and vehicle exposure to smoking and vaping and offering cessation support; presence of mold, dust mites, cockroaches, and mice in the house suggesting remedies such as improving cross-ventilation before recommending air filtration systems, impermeable mattress and low toxicity traps rather than spraying chemicals.

Engaging Teenagers

Adherence to asthma treatment can be a challenge among teenagers. Teenagers might be forgetful, have low perception of risks when asymptomatic, have fears of side effects such as growth suppression, desire independence, or feel embarrassment using inhalers in public.

Behavioral change in adolescents is a slow, incremental process, Fitzgerald said. “We need to create a nonjudgmental, curious environment, clarify goals and have a shared understanding of asthma. We need to be on the same page in order to move forward.”

He suggested that clinicians can use Motivational Interviewing during brief 10- to 15-minute consultations to increase patients’ participation in disease management. He said that acknowledging that daily preventer inhalers are difficult to maintain is a first step, and then allowing adolescents to choose small, realistic changes to their daily regimen. “Ask open-ended questions like, ‘What worries you most about your asthma?’ or ‘What might be better if the inhaler was used more regularly?’”

Patel, Schwerk, and Fitzgerald reported having no relevant financial relationships.

Manuela Callari is a freelance science journalist specializing in human and planetary health. Her work has been published in The Medical Republic, Rare Disease Advisor, New Scientist, The Guardian, MIT Technology Review, and others.