Every year, approximately 5,000 Canadians are diagnosed and treated for cancers of the head and neck (HNC) (CCS, 2011). Approximately 750 new patients are treated for HNCs at the Princess Margaret Cancer Centre (the PM), University Health Network (UHN) each year, with over 18,000 annual patient visits. Survival rates are improving through changes in case mix and more effective treatment. Treatment can be particularly debilitating and patients can suffer a host of short and long term problems, including pain, fatigue, difficulties with dry mouth, chewing amd eating, swallowing, pain with swallowing, loss of taste and appetite, weight loss, speech, reduced mouth opening, dental issues, facial disfigurement and skin reactions and fibrosis. The impact on patients and families is profound and relatively fewer resources are available for ongoing support and rehabilitation as compared to patients with more common types of cancer for which strong advocacy groups exist. In addition, patient populations are increasingly heterogeneous, with significant minorities of non-English speaking patients, lower socioeconomic and often marginalized individuals, the very elderly, and younger patients with virally associated (HPV+) cancers.

The HNC Survivorship Program at UHN was developed to address the unique and diverse needs of people affected by a diagnosis of HNC and includes supportive care from the time of diagnosis, through treatment and long term follow-up. The program is interdisciplinary and holistic. The model for HNC Survivorship program supports an integrated philosophy of survivorship care. This addresses the needs and complexities across the spectrum of care from the time of diagnosis through treatment and long term follow up. The focus includes medical care, monitoring for late effects, risk reduction, symptom control, and psychosocial functioning and support. The majority of patients may be supported with interventions related to information, patient education, self-management, community resources and volunteer support. Specialist management is required for a smaller proportion of the population. Some patients may require case management or navigation; we envision the ability for an individual to transition between these levels of care as needs evolve. Specialist management may be provided through identification and referral to the Clinical Nurse Specialist, Nurse Practitioner, Registered Dietitian, Speech Language Pathologist, Social Worker, Spiritual Care Provider, Physical Therapist, Occupational Therapist, Psychologist or Psychiatrist, Dentist, Reconstructive Surgeon, Late Effects clinic and/or other community partners and specialists.

Care is being transformed from medical treatment and post treatment cancer surveillance to improved support throughout the cancer trajectory, focusing on the physical, functional, rehabilitation and psychosocial needs of patients and families. Collaboration with internal and external partners has been crucial to the development of the HNC Survivorship Program that is unique in North America.

Contact Information:

Title: Manager, Patient Safety and Clinical Risk

Contact information: ruxandra.nedu@uhn.ca

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