Consistent food rules help families manage PWS hunger across a lifetime

Having predictable rules and routines around food is not only a useful management tool for people with Prader-Willi syndrome (PWS) but also absolutely central to managing hyperphagia, a hallmark symptom of the disease characterized by uncontrollable hunger, according to new research.

In the study, an international team of experts noted that while emerging medications may benefit patients and their families, these therapies need to be combined with predictable routines around food access, which remain the foundation of day-to-day care.

The study, “Hyperphagia in Prader–Willi syndrome: linking hypothalamic dysfunction to clinical assessment and management across the lifespan,” was published in the Orphanet Journal of Rare Diseases.

The work was funded by Soleno Therapeutics (a subsidiary of Neurocrine Biosciences), which markets Vykat XR (diazoxide choline), an approved treatment for PWS-associated hyperphagia.

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“By connecting the underlying disease biology with the daily experience of hyperphagia, these expert perspectives can help inform how best to assess and manage the symptoms and thus support continued progress in care for the PWS community,” Eiry W. Roberts, MD, Neurocrine’s chief medical officer, said in a company press release announcing the study’s publication.

Hyperphagia is often one of the most difficult symptoms of PWS to manage. Out-of-control eating often results in obesity and related complications, and patients’ attempts to seek food can be disruptive and life-threatening.

The consensus stems from a late-2024 expert meeting in France that brought together clinicians to synthesize current research on hyperphagia in PWS and best practices for managing it.

The experts emphasized that hyperphagia itself is more complex than simply feeling very hungry. It is the result of problems in the nervous system that make it impossible for the body to tell when it does or does not need food.

“In individuals without PWS, appetite is regulated by internal signals that guide food intake in response to physiological needs,” the researchers wrote. “In PWS, these signals are unreliable or absent, necessitating external structures to fulfil a similar regulatory role.”

Establishing food security as an external guide

That’s where food security, summarized in the mantra “NO DOUBT, NO HOPE, NO DISAPPOINTMENT,” can be key. The idea is that people with PWS should know precisely what, when, and how much food will be served, removing both the uncertainty and the false hope of obtaining extra food.

The researchers described this system as an external satiety system, stepping in to perform the signaling job the brain cannot manage. Environmental measures such as set meal times and secured pantries are not mere behavioral strategies, but “essential components of physiological regulation in PWS.”

These routines need to remain consistent across different environments, whether at home or away, and be flexible and adaptable as patients grow from childhood through adolescence and into adulthood.

Finally, while food security is essential for controlling excessive eating and reducing overt food-seeking behaviors, this may interfere with clinical assessments of both hyperphagia and treatment response.

“Observable behaviours may reflect the success of environmental management rather than the underlying biological drive,” the researchers wrote. In addition, medications that effectively reduce internal food drive “may not lead to large observable behavioural changes in a tightly controlled environment but could still represent meaningful clinical benefit.”

To address this, the experts called for broader evaluation tools. Future clinical assessments should measure internal hunger experiences, caregiver burden, supervision needs, and developmental stage alongside visible eating behaviors.

“Improving care will rely on a truly integrated approach,” said Maithé Tauber, MD, the study’s first author at Université Toulouse III in France, “one that deepens our understanding of the underlying biology, reflects the experience of individuals and their families, and actively engages healthcare teams within well-coordinated systems of care that support patients from birth throughout their lives.”