Superregional Referral Units

The concept of Super-regional referral units could serve as the "engine" of change for some of the above dilemmas as few surgeons see sufficient cases to develop expertise. Small surgical volumes probably impact on outcomes for individual patients. Currently there is a paucity of prospective studies and little by way of multi-disciplinary care available. Unfortunately to date there has been only one prospective study addressing quality of life, psychosexual well being, and social issues relating to penile cancer and its treatment.44 This deficit needs to be addressed by referral centers treating a high volume of cases.

To address these dilemmas, a number of countries have developed compulsory referral networks, whereby all new cases of penile cancer are referred to specialized units. In the UK, it is recommended that such a unit covers a population of at least four million people.45 Other countries may require different stipulations according to the national incidence. There are several advantages to this healthcare network.

• It concentrates skill-sets into one disease-based unit. The care is patient centered with a full range of service that should include dedicated nursing, psychosexual counseling, radiology, pathology, urology, plastic surgery and administrative support, as well as access to social and spiritual support teams. Such units should have academic links, working with biostatisticians, tumor registries, tissue banks, and laboratory scientists.

• The network can collect all cases from a prescribed geographical area. This means that research will represent a larger cohort, including a whole spectrum of the endemic disease rather than highly selected cases that may be found with other referral systems.

• These networks are better placed to design and recruit for clinical trials. Due to the holistic approach of such a unit, they have the potential for multimodal therapy for advanced disease and may perform quality of life studies. Being at the frontline of delivery of care, they can advise on the development of preventa-tive strategies.

• They may reduce morbidity of inguinal lymph node dissection (ILND), by evolving techniques such as DSNB or VEIL. They may work with surgical oncologists who manage inguinal nodes for other pathologic entities (e.g., melanoma, vulval cancer, head and neck) to draw on the experience gained in more common malignancies where appropriate.

• Due to enhanced patient flow, networks should provide higher level evidence by virtue of prospective studies, with better follow-up addressing not just direct oncological parameters but also survivorship issues.

• Using agreed upon international staging, management, and reporting systems, there is potential (and need) for multinational studies as well as specific clinical trials.

There are also some theoretical and practical disadvantages to this approach.

• Research and development is limited to fewer clinicians/scientists, although it is doubtful that the other extreme of dilution of case volumes is preferable.

• Patients may dislike having to travel for management of their cancer and subsequent follow-up. This may affect compliance. Hopefully the prospect of holistic management with potentially improved cancer outcomes would outweigh this disadvantage for the individual.

• There may be resistance of clinicians to refer cases to the unit, but national guidelines should overcome such obstacles.

• Adequate funding for the unit to achieve optimal clinical, research, and administrative goals may be difficult in the setting of a rare disease; however, collectively the units could generate more of a political lobby.

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