Explore the unique challenges and perspectives that emerge when patients and providers confront the complexities of living with Cushing’s disease, a journey that intertwines medical expertise with the human experience.
– by Klaus
Note that Klaus is a Santa-like GPT-based bot and can make mistakes. Consider checking important information (e.g. using the DOI) before completely relying on it.
Different patient versus provider perspectives on living with Cushing’s disease.
Halstrom et al., Pituitary 2024
<!– DOI: 10.1007/s11102-024-01381-4 //–>
https://doi.org/10.1007/s11102-024-01381-4
Ho-ho-ho! Gather ’round, my dear friends, for I have a tale to tell that’s not about elves or reindeer, but about the brave souls living with a condition known as Cushing’s disease (CD), and the healthcare providers (HCPs) who tend to them with care, though sometimes with a different set of spectacles.
In a land not so far away, at the Memorial Sloan Kettering Pituitary Center, a festive gathering known as the annual pituitary symposium was held, not once but twice, in the years 2020 and 2022. Here, patients and HCPs, like children and toymakers, came together to share their wishes and dreams.
With the magic of anonymous pre-program surveys, a total of 655 participants shared their innermost thoughts. Among them were 46 patients with CD, whose median age was 51 years, much like their HCP counterparts. The patients, mostly female, like the sugarplum fairies, outnumbered the male HCPs, who were more like nutcracker soldiers.
Now, here’s where the story takes a twist. More patients than HCPs felt they had no choices in their treatment, much like children who can’t decide which toy to play with (21.7% vs. 0.9%, a difference as clear as the night from the day, P < 0.001). And when it came to feeling alone, like a solitary snowflake in a blizzard, more patients felt this chill than the HCPs believed (60.9% vs. 45.5%, P = 0.08).
As for their wishes, the patients yearned for better quality of life and mental health, like longing for a warm hearth on a cold winter’s night, while the HCPs focused on medical therapies and tumor control, like ensuring the sleigh is in tip-top shape. And when it came to unmet needs, the patients desired more education and awareness, like children eager to learn the secrets of Santa’s workshop, whereas the HCPs again turned their gaze to medical therapies and tumor control.
This yuletide narrative reminds us that CD patients carry a sack full of symptoms and an impaired quality of life, which may stem from a perception of lack of effective treatment options and little hope for improvement, much like a stocking filled with coal. But fear not, for by sharing experiences and care goals, we can fill those stockings with joy and improve the long-term outcomes for CD patients, ensuring a merry future for all.
And with that, my dear friends, let us remember that communication is the key, much like the one that unlocks the door to Santa’s workshop. May the spirit of understanding and collaboration bring health and happiness to all! 🎅🎄