Newswise — University of Essex researchers have discovered that individuals afflicted with the "most dreadful" uncommon brain tumor are slipping through the gaps of mental health care.
In a recent survey involving patients and clinicians, it was revealed that individuals who have survived this severe condition encounter difficulties in obtaining the therapy that is readily accessible for other grave ailments like cancer. Moreover, there is a notable absence of tailored assistance in place.
Psychologists have conducted a groundbreaking examination of the mental well-being of British patients with rare brain tumors, leading researchers to urgently advocate for reforms within the healthcare system.
With her findings published in the European Journal of Oncology Nursing, Dr. Katie Daughters expresses her aspiration that they will pave the way for an augmentation of mental health services within the NHS specifically tailored to patients with brain tumors. She emphasizes the importance of doctors receiving crucial training and the necessity of establishing additional specialized services.
Dr. Daughters' research primarily concentrated on examining the ramifications of adult-onset craniopharyngioma, a condition that typically afflicts individuals between the ages of 50 and 74. However, it is worth noting that this tumor can be diagnosed in individuals older than 18 years old.
Craniopharyngiomas develop in close proximity to the pituitary gland, a crucial hub for hormone production, as well as the optic nerve. Consequently, patients frequently encounter visual disturbances, weight gain, and alterations in their personality due to the tumor's impact on these vital structures.
Fortunately, surgical removal of the tumour has a high survival rate, but the intrusive treatment can be just the beginning of a very long road.
Dr Daughters discovered that after physical treatment patients struggled to receive therapy or counselling – despite the illness causing widespread psychological difficulties.
Dr Daughters said: “Most people have never heard of craniopharyngiomas, however, for those that have, they know how awful these tumours can be.
A participating neurosurgeon with extensive expertise in the field characterized these tumors as "one of the most dreadful conditions I handle." In addition, patients expressed sentiments such as "I no longer feel like the person I was prior to the diagnosis," underscoring the profound impact of the condition on their sense of identity and well-being.
While recognizing that patients experience a diminished quality of life, it has been acknowledged that there has been a lack of direct inquiry into how the tumor specifically affects their lives beyond the hospital setting. The significance of seeking input from both patients and healthcare providers on the broader impact of the tumor on various aspects of life has been acknowledged.
The study findings reveal that the consequences of the tumor can be profoundly devastating, and notably, it highlights the alarming fact that patients are not receiving the necessary psychological support they require. This underscores the urgent need to address the inadequate provision of psychological assistance for individuals affected by the condition.
As part of the study, Dr Daughters interviewed patients and doctors at the frontline of the rare condition.
Dr. Daughters' research uncovered a high prevalence of depression and anxiety among patients, with many experiencing difficulties in managing their emotions. Instances were reported where patients would break into tears easily or feel inexplicably angry. These findings highlight the emotional challenges faced by individuals affected by the condition.
Although many patients experienced physical symptoms such as fatigue and weight gain, their primary concern revolved around the repercussions these symptoms had on their social lives and, ultimately, their mental well-being. The study revealed that the impact on their social interactions and mental health was the most significant aspect that worried them.
Both doctors and patients expressed the urgent need for further efforts to comprehend the psychological consequences of adult-onset craniopharyngioma. They emphasized that merely listening to the experiences of other patients would provide a sense of solace, making them feel less isolated or stigmatized in their journey. The collective consensus emphasized the importance of increasing awareness and support to address the psychological aspects of this condition.
Clinicians are advocating for the establishment of more specialized mental health services in the long run to cater to the unique needs of craniopharyngioma patients. Simultaneously, they are urging for immediate access to the existing mental health services currently provided to cancer patients. This dual approach aims to address the immediate requirements of craniopharyngioma patients while working towards long-term solutions for their mental health care.
Dr. Daughters further emphasized that with a comprehensive understanding of the challenges and strengths that adult-onset craniopharyngioma patients face in their daily lives, further studies can be designed to delve into these processes. The goal is to develop new interventions that enhance the social lives of these patients, ultimately leading to improved overall well-being. This acknowledgment paves the way for future research aimed at developing tailored interventions and support for individuals affected by this condition.
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