Summary of Fellowship:
This project entitled Using a patient centered approach to engage head and neck patients and their families: Improving their experiences and outcomes arose from needs I observed when working as a patient designated oncology nurse in the cancer clinic. Most of my practice involved those diagnosed with a head and neck cancer. These patients are very complex due to the intensity of their treatment, its side effects and other psychosocial issues common to the patient group. In addition, there has been a recent increase in numbers of patients (~ 20%) diagnosed with this type of cancer due to the effect of the human papilloma virus (HPV). Due to the fact that this is a relatively small patient cohort as compared to lung, breast, colorectal and prostate, there is a paucity of patient support and education tools. Therefore, I applied for an RNAO fellowship to have dedicated time to assess and address these gaps in care. As part of the project I worked under the guidance of my mentor(s) to develop specific educational resources for patients, families and health care providers. The Ottawa Hospital Cancer Program had previously developed materials for lung, breast, colorectal and prostate patients. Therefore it was not unrealistic to expect success in a short time frame of three months. In addition, other resources were easily available to enhance this project. Some of these included: an active Patient and Family Advisory Committee to review materials, an on-site design and printing department to facilitate completion of patient education materials, an extensive inter-professional health care team with expertise in the management and care of this patient population, access to dedicated space, computers, and library services to enhance my experience. Lastly, I had access and support from my mentors and senior management to ensure the success of this fellowship.

My overall goal for learning was to broaden my knowledge and expertise in a patient centered approach to care specifically related to the unique needs of the head and neck cancer patient population. Throughout the fellowship I have learned new skills and improved others in the following areas: conducting a comprehensive literature review; completing an annotated bibliography; performing an environmental scan; developing, implementing and analyzing electronic surveys to obtain health care professional opinions on gaps in care and potential solutions; formulating a quality improvement plan using PDSA methodology; finalizing a SWOT analysis, and developing educational materials. In addition, one important goal was to enhance my own baseline knowledge and develop skills in mentoring and teaching my colleagues to ensure that all of our patients receive safe, effective patient-centered care. I had the opportunity to assess what our nurses identified as knowledge gaps when working with this patient population. Then I was able to create a fact sheet for the nurses as well as to teach a lunch and learn focused on care of head neck patients. From the patient perspective, I was able to improve my interviewing and teaching skills by having dialogues with patients and families to determine what was important for them. This was followed by the development and implementation of specialized teaching sessions to address their unique needs.

Outcomes:
From the literature review, multidisciplinary team survey, and patient interviews one specific gap identified was a lack of written information available for patients and family members. During this fellowship a patient information resource guide and a patient passport were developed for patients and family members. Information included in the guide was based on the identified gaps from the environmental scan, patient interviews, health care professional surveys and the literature review. The passport was designed to help patients and families track their care plan, appointments, medications, symptoms and tests in an easily accessible and portable format. An education class was also developed for patient and family members to be held and delivered every two weeks by inter-professional health care team members including nurses, dietitians, speech-language pathologists, and physiotherapists. The presentation for this class designed specifically for the head and neck population was developed and vetted by all team members. To date the class has been attended by 23 patients and family members. The class is now mandatory for these patients and has been well received according to our post class evaluations to date. This class will be sustained as an integral part of the education for this patient population. In addition, a proposal was intensive treatment regimen when there was a planned gap in scheduled cancer centre visits. Assessment and intervention by a specialized head and neck oncology nurse during this nursing clinic is expected to address this gap as well as prevent emergency room visits and frequent calls to the telephone support line.
A lack of knowledge and consistency in best practices amongst the head and neck oncology nurses was identified through the environmental scan. A large range in baseline knowledge existed amongst the nurses currently working with the head and neck oncology patient population. An electronic survey was conducted to determine what information the nurses required to provide consistent, safe care to this patient population. An information fact sheet was created and distributed to the nurses to help familiarize everyone with basic of head and neck oncology knowledge. A lunch and learn session was designed and delivered to 68 oncology nurses to provide a more comprehensive overview of head and neck cancer. Both the fact sheet and the lunch and learn were tailored to address the identified gaps. The class is also planned for presentation to the radiation therapists in October. The patient education materials developed (patient guide, passport and class) are now readily available for all health care providers thereby standardizing the information provided regardless of who is addressing patient information needs. As we are currently getting prepared for hospital and cancer program accreditation, these materials will help to meet accreditation requirements for this patient population. In addition, since this is the first smaller patient population to have specific materials designed it will set the standard for other small patient populations such as sarcoma, dermatology and hepatobiliary etc .

Overall Experience:
The opportunity to complete this fellowship has been amazing. I applied to do this fellowship because I am very passionate about the head and neck patient population and I wanted to improve the care and resources available to them. I also wanted to do the fellowship to help determine what would be the next steps for me in my career. I was unsure what type of position I would like to hold in the future. Throughout the fellowship I was able to determine what would be the right fit for me as a job. The fellowship has encouraged me to go back to school for my masters. My favorite moment from my fellowship was being able to see the collaboration and willingness to help from the entire multidisciplinary team. The entire team was more than happy to answer my numerous questions, suggest strategies, and help review designed materials throughout the entire fellowship. The openness from the team helped to solidify what a need there was for this patient population and also what a great multidisciplinary team we have. In addition, I was able to write and submit an abstract to the Canadian Association of Nurses in Oncology. I was accepted for an oral presentation and will be travelling to Calgary in October to attend and present at this national oncology nursing conference. This will provide me with an opportunity to learn from my Canadian oncology colleagues and to share this wonderful fellowship opportunity.