Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest or importance and go more in-depth. In this story we will talk about the details of the study and explain why it’s important, who will be impacted, and more.

If you read our short form research stories and find yourself wanting to learn more, you’ve come to the right place.

This week’s study is…

The psychological impact of adult-onset craniopharyngioma: A qualitative study of the experience of patients and clinicians

We previously published about this research in a story titled “People with Craniopharyngioma Lack Mental Health Support, Study Says” which can be found here. The study was originally published in the research publication the European Journal of Oncology Nursing. You can read the full text of the study here. 

This research team was affiliated with the University of Essex.

What Happened?

Craniopharyngioma is a rare tumor affecting the brain which hasn’t received a lot of attention from the medical field. This tumor grows near the pituitary gland, which can lead to major impacts on a patient’s quality of life. In this study, researchers evaluated the mental health impacts of craniopharyngioma in adult-onset cases of the tumor. Previously, no in-depth analysis of this patient population had been conducted.

Treatment is usually successful for this disease, but challenges for patients don’t necessarily end there. Eight patients and 10 clinicians were recruited for the small-scale study and participated in structured interviews. These participants were recruited from across the United Kingdom (UK). The research team found that following treatment for their disease, patients often struggled to access therapy or other forms of mental health support and treatment.

The interviews revealed that mental health challenges, such as anxiety and depression, were widespread among patients living with craniopharyngioma. Many participants expressed anger at their situation or broke down in tears. Following treatment, weight gain and fatigue were common, but many patients were more concerned about their mental health and the decline of their social lives. 

Meanwhile, the clinicians that were involved in the study believed that specialized mental health services were needed for patients in the long run, and more immediately, that these patients needed access to the same services that were available for cancer patients. The researchers also concluded that more study in this field is needed in order to get a better understanding of the impacts of craniopharyngioma.

About Craniopharyngioma

Craniopharyngioma is a rare brain tumor which originates in embryonic tissue of the pituitary gland. While this tumor usually appears in children, adults are also affected. It can occur at any age, but pediatric cases typically appear in the age range of 5-14 years; in adults, the most common age range is 50-74 years. This tumor is almost always benign, but because of its location, it inflicts a range of symptoms on patients. These include hypersomnia, headaches, severe hypothyroidism, vision loss, polyuria, polydipsia, pituitary insufficiency, growth hormone insufficiency (results in stunted growth and delayed puberty in children; causes fatigue and muscle atrophy in adults), and adrenal insufficiency. Some symptoms continue following treatment, which typically includes surgery. Radiotherapy may be used if total removal isn’t possible. Chemotherapy may be used in malignant craniopharyngioma. Outcomes vary, and this tumor can recur after surgery. To learn more about craniopharyngioma, click here. 

Why Does it Matter?

This groundbreaking study is one of the very first to investigate the mental health impacts of craniopharyngioma. While the finding that this tumor has major mental health effects and quality of life impacts on patients is hardly surprising, the results should bring awareness to the urgency of providing this patient population with greater support and access to mental health resources:

“Most people have never heard of craniopharyngiomas, however, for those that have, they know how awful these tumors can be.

An experienced neurosurgeon who took part in the study described these tumors as ‘about the most horrible condition I look after’, while patients reported that they ‘don’t feel like I’m the same person I was before the diagnosis’.

We understand that patients suffer a poorer quality of life, but until now, we haven’t actually asked patients, and the people who treat them, how the tumor has impacted their lives outside of hospital.

What we learned is that the impact can be devastating and, importantly, this study shows they’re not receiving the psychological support they need.” – Dr. Katie Daughters, University of Essex

This research also gives a clear path for future research into the challenges faced by these patients:

 “Now we have a clear picture of the kinds of strengths and difficulties adult-onset craniopharyngioma patients experience in their day-to-day lives, we can design further studies to examine these processes and ultimately design new interventions to improve the social lives of these patients.”