From Lewis S. Blevins Jr, MD – I delivered an address on this topic in 2008. Here are the main themes extracted from a summary of a document that I prepared for the working group.
“A great majority of those patients with pituitary disorders do not have the opportunity to avail themselves of the very best in medical care for their particular disorder. Pituitary centers have been created at a few academic institutions. These “centers” are only beginning to meet the needs of the affected patients and in some instances, despite their best efforts, they fall short and providing comprehensive, user-friendly, versatile, multidisciplinary care. At the December in the Desert Conference, sponsored by the Pituitary Network Association and the Department of Neurological Surgery at the University of California, San Francisco, and held in Palm Springs California over 3 days in mid December 2008, the question, as to “what constitutes a pituitary Center of excellence” was debated by health care providers, patients, families, and the allied health and mental health professionals. This treatise seeks to incorporate the information gleaned from the meeting in order to provide a structured document, or proposal, that may act not only as a roadmap for institutions developing centers but also as an instrument to be used to identify capable centers by patients, their families, and referring physicians.
Components of a Successful Center
A Pituitary Center of Excellence should, first and foremost, meet all of the needs of patients who may be referred for evaluation and management. Supplemental, nearly equally important, missions of a Center include the provision for teaching so that future pituitary specialists may be trained, a plan to educate referring physicians, etc., and the advancement of our knowledge of pituitary disorders through scientific research, reports of experiences, etc.
Clinical services should be delivered by a multidisciplinary team of interested, well-educated, dedicated health care providers and their support staff.
The central core of the team should be composed of one or more dedicated pituitary endocrinologists and one or more experienced pituitary neurological surgeons. These health care providers should work closely in the evaluation and management of all patients referred for evaluation, preferably within the spectrum of a joint clinic, and should work together in the inpatient setting as well. With rare exceptions, the endocrinologist should function as the team leader as a majority of the care provided to patients with pituitary disorders is of a medical rather than of a surgical nature. The endocrinologist should conduct preoperative evaluations of the adequacy of pituitary function, participate in decisions regarding the need for medical and surgical interventions, see patients postoperatively to determine the extent of tumor resection and to evaluate postoperative pituitary functions, and manage hypopituitarism as well as persistent disorders of hormone hypersecretion, etc. The endocrinologist would be expected to act as the gatekeeper and make appropriate referrals for evaluation of related disorders. Ideally, the pituitary neurosurgeon would be dedicated to performing all of the transsphenoidal surgical procedures at the Center and would have sufficient clinical experience to justify performing the relevant surgical procedures.
The provision of a successful clinical service also requires subspecialty consultants in the following fields who may be called upon to assist in evaluation and management:
- Radiation oncology- provision for conventional or stereotactic radiosurgery for residual disease
- Neuroradiology- evaluation of radiographic images was ability to perform dynamic contrast-enhanced thin slice MRI analysis of sella and parasellar structures
- Interventional Neuroradiology-performance of bilateral inferior petrosal sinus sampling
- Otolaryngology-evaluation and management skull base invasion, assistance with complex surgical procedures, evaluation and management of her spinal fluid leak, postoperative sinusitis, etc.
- Neuro-Ophthalmology-evaluation of the pre-and postoperative visual apparatus; must have appropriate equipment to provide visual field assessments, etc.
- Neuropathology-comprehensive analysis of surgical specimens with ability to employee immunochemistry, electron microscopy, and other advanced techniques
- Neurologists-evaluation and management of headaches
- Neuroanesthesiology-with particular reference to the challenges the anesthetizing patients with acromegaly, adrenal insufficiency, etc.
- Neuropsychology-evaluate functional status, cognitive performance, etc. in patients who require transcranial procedures, those with hypothalamic disturbances, etc.
- Psychiatry-to assist in the evaluation and management of patients who have psychological consequences of their underlying disorders
- Marriage and Family Therapists- to counsel patients on a multitude of relevant psychosocial and behavioral issues
- and a wide array of consultants-to assist in the management of co-morbidities.
It is of critical importance to involve the patient’s primary physicians in the evaluation and management when necessary. Primary physicians prefer to maintain control over secondary consequences of pituitary diseases such as hypertension, diabetes mellitus, depression, etc.
Communication is essential. A pituitary Center of excellence should be able to communicate within itself, with referring and primary care physicians, and, most importantly, with patients and designated family members. Most of the barriers to communication can be overcome by changes in attitude. Each center should, however, ensure that their institution-specific mechanism for transmittal of information is reliable, timely, comprehensive, and all-inclusive.
A Pituitary Center of Excellence should build its educational mission around that of educating the patient about their disease process, treatment options, expected risks and benefits of treatment, long-term outcomes, and long-term follow-up.
It is critical that the “physicians of tomorrow” be trained to expertly evaluate and manage patients with pituitary disorders. When possible, endocrine, internal medicine, family practice, and neurosurgical trainees should be involved in the evaluation and management of patients with pituitary disorders to a limited extent and in keeping with the traditional Socratic methods of teaching. At no time, however, should the patient’s care be compromised so that a trainee may gain experience. Furthermore, trainees should be involved in research in order to advance the knowledge of pituitary disorders, to report outcomes, and to share interesting case reports with the medical community.
A program of outreach should be developed by each center so that community physicians may be educated regarding pituitary disorders so they may more readily recognized and diagnose affected patients, so that the need for referral to a tertiary institution for Center can be emphasized, and so a dialogue can be established between the center and physicians in the community.
One of the most important aspects of the educational mission should be to provide sufficient education to patients. There should be provisions for educational resources, both printed an electronic, for the benefit of patients and their families. Centers of excellence should initiate and support local patient support groups and, when possible, assist in the selection of speakers, coordination of meeting space, and other elements top make the support group successful.
Advancement in our understanding of pituitary disorders, approaches to laboratory testing, improvements in surgical technique, and development of new medical therapeutics are just a few of the important benefits derived from basic science and clinical research in the field of pituitary diseases. A center of excellence should actively engage in research and scholarship in one or more arenas in order to better serve our patients.”
That address and document led to a location of the following manuscript .
Truthfully, however, from the patient’s perspective, it comes down to the experience and the abilities of the operating neurosurgeon and the endocrinologist involved in the patient’s care. I recommend that you seek endocrinologist who spends more than 50% of his or her time caring for patients with pituitary disorders. As for neurosurgeons, there are a few complications that illustrate better success rates and this complication rates for experience surgeons when compared to an experienced surgeons.
The following manuscript illustrates that neurosurgeons that have performed more than 500 pituitary operations have fewer complications. It is definitely worth reading the abstract. As a physician, if I had a pituitary tumor, I would not let anyone who had been fewer than 500 pituitary operations perform the surgical procedure on me!
Several published manuscripts suggest that the remission rates for acromegaly, and other disease processes, or are higher when performed by an experienced surgeon compared with a group of less experience surgeons. This topic, in regards to acromegaly, is addressed in the discussion section of the following article and it is well worth reading.
Unfortunately, socioeconomic and other factors make the availability of expert care to those who “have” much more accessible than for those who “have not.” Still, there are avenues to find the very best care available. My recommendation is to call centers of excellence and inquire as to how you might be able to avail yourself of opportunities for care. First and foremost, and this is just a commentary on the times, maintain quality health insurance. You’ll never know when you’ll need it!
I have seen a manuscript , but cannot locate it at the present time, indicating that performance of 50 or so transsphenoidal pituitary surgical procedures annually constitutes a sufficient level of experience to qualify as an expert in the performance of pituitary surgery. In many ways, however, it’s not about the numbers. I have encountered surgeons who perform more procedures done this benchmark annually who, in my opinion, should probably refer patients elsewhere.
In the end, it comes down to a combination of experience and team work, but perhaps more importantly, the judgment of the operating neurosurgeon. And, by judgment, I mean intraoperative judgment that guidance the surgeon to determine how to perform the procedure, wayfinding, how to address the intraoperative findings, when to stop, when to continue, etc. Further, good judgment is also necessary in the selection of patients for surgery, the preoperative evaluation and planning stages, and in the postoperative evaluation and management.
Photo by Niall Kennedy Original photograph no modifications.
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