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«Difazio, Rachel October 10, 2013 AACN Awards Committee American Association of Colleges of Nursing One Dupont Circle, NW Suite 530 Washington, DC ...»

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Difazio, Rachel

October 10, 2013

AACN Awards Committee

American Association of Colleges of Nursing

One Dupont Circle, NW Suite 530

Washington, DC 20036

Dear Awards Committee Members:

As Dr. Rachel DiFazio’s dissertation chairperson and with the full support of the Boston

College William F. Connell School of Nursing’s Dean and PhD Program Committee, it is with

great enthusiasm that I am nominating Dr. DiFazio for the AACN Excellence in Advancing

Nursing Science Award. Dr. DiFazio graduated in May 2013 with the Doctor of Philosophy in Nursing degree from Boston College. Her dissertation, an original piece of research, is entitled “Patient-Centered Outcomes of Orthopedic Surgery in Children with Cerebral Palsy”. First, I will present a description of this noteworthy work, initially through the inclusion of the project’s

Abstract

with further comments to illuminate its significance. Following this, Dr. DiFazio’s unique, substantive contributions to the advancement of science, practice, policy, and nursing and interprofessional education will be explicated.

Dr. Difazio’s dissertation specifically stems from her extensive experience as a pediatric orthopedic nurse practitioner and the challenges she sees families face when caring for profoundly impaired children who have undergone complex spinal and hip surgeries. While her medical colleagues measure clinical success by improved radiographic findings, Dr. DiFazio expanded this view to include the surgical impact on the psychosocial and economic influences on family life, with specific attention given to the child’s quality of life, caregiver burden, and non-medical, non-reimbursable expenses families incur during their child’s hospitalization. The

abstract is as follows:

Purpose: The study’s purpose was to elucidate changes in parents’ perceptions of health related quality of life (HRQOL), functional status, and caregiver burden in children with severe CP following extensive orthopedic surgery and to determine the amount of nonmedical out-of-pocket expenses (NOOPEs) incurred during hospitalization.

Background: CP is the most common cause of childhood physical disability. Children with severe non-ambulatory CP have multiple complex medical problems usually developing hip dislocations and neuromuscular scoliosis; these require extensive orthopaedic surgical interventions to prevent progression. The surgical trajectory is costly, resource intensive, and complications are common. Decision-making by families and providers need to extend beyond anticipated physical and radiographic improvements to include patient-centered outcomes including HRQOL, functional status, caregiver impact, and financial burden. Prior research on this second group of outcomes does not exist.

–  –  –

Methods: A single group prospective cohort study (N=48) design was used to measure changes pre- and post- surgery. NOOPEs were collected on a daily basis from parents during their child’s hospitalization. A linear mixed-model regression analysis for longitudinal data, incorporating serial patient measurements over one year, was used to assess changes in HRQOL, functional status, and caregiver impact using measures normed for this population (i.e., CPCHILD, ACEND). NOOPEs were calculated using descriptive statistics.

Results: Significant declines in HRQOL and functional status were noted at six weeks postoperative with return to baseline at three months. Long-term significant (p =.005) improvements, however, were noted beginning at six months. Caregiver impact did not change significantly over time. The total NOOPEs for the inpatient ranged from $59.00Median = $479.30) with 1971.5 missed hours from work.

Conclusion: Children with severe CP who undergo extensive orthopaedic surgery and their families experience improvements across a variety of patient-centered outcomes in the longterm following surgery. Nursing has a critical role in assisting families in decision-making around surgery and providing anticipatory guidance and support.

Current and projected outcomes of this work are numerous and are advancing science, practice, policy, and education. In order to conduct this study, Dr. DiFazio needed the full support of her physician colleagues as the results had real implications for whether these surgeries should be conducted, especially as this population in general has a significantly shortened life span, is particularly prone to post-surgical complications, and the peri-surgical course is very expensive, often costing well in excess of $100,000 for non-complicated cases. The most immediate impact of this study is that its results are being used as pilot work for a major research project entitled “Evaluation of Outcomes of Hip Interventions for Children with Cerebral Palsy: An International Multi-centre Prospective Longitudinal Comparative Cohort Study”. This study is sponsored the Pediatric Orthopaedic Society of North America research working group; its design was approved this past April and data collection is set to begin. A series of manuscripts reporting the primary research findings as well as advancing what is known about the psychometric properties of the CPCHILD are in progress. As a result, changes in patient and family education to facilitate decision-making and planning also have occurred at Boston Children’s Hospital.





A second outcome is the initiation of investigations resulting from the study’s findings designed to continue advancing the science, including a case control study on post-surgical complications of children with severe CP. Although the design of her dissertation research required that Dr. DiFazio follow the participants for a year post-surgery, the results of this work were so intriguing to her medical and nursing colleagues that her study population will continue to be followed for the minimum of an additional year, adding significant information regarding the long-term physical and psychosocial impact of intensive surgeries. Of note, this continuation is funded by the Boston Children’s Hospital Department of Orthopaedics. Dr. DiFazio plans to advance this line of work, including the submission of additional research grant proposals and a National Institute of Nursing Research’s Mentored Research Scientist Career Development (K01) Award proposal. The emphasis of the K01 proposal will be additional training in measuring clinical efficacy, cost-effectiveness, and its measurement, with an emphasis on critical nursing variables; thus preparing Dr. DiFazio to become a leading nurse scholar in the measurement of clinical outcomes.

A third outcome is related to the advancement of statistical methodologies; Dr. DiFazio’s methodology serves as a model for nursing and interprofessional research investigating the quality of procedures for individuals with rare or orphan conditions. Studies such as hers where

Difazio, Rachel

the relative numbers of affected individuals are small despite the disproportionate use of healthcare resources are critical. Dr. DiFazio employed a statistical technique, linear mixed method regression analysis for longitudinal data, that to date, has rarely been used in nursing and other healthcare research. Despite it shows great promise for examining clinical questions of interest to nursing.

Fourth, Dr. DiFazio’s choice of topic and resultant work has significant policy implications for vulnerable populations such as those with profound cerebral palsy. Because her study was informed by the emergent changes in healthcare delivery and financing and specifically the reimbursement implications for high cost surgeries with limited evidence of effectiveness, it design and results are useful in the determination of the most clinically efficacious treatment protocols and ensuring that the necessary insurance coverage is in place.

The last and perhaps most important outcome is that Dr. DiFazio’s enthusiastic involvement in clinical research has had a significant impact on the nurses with whom she works. The Department of Orthopaedics research assistant assigned to the project was so taken with its meaning she abandoned her plans for a career in medicine and now is enrolled in a Master’s entry nursing program with plans to become a nurse practitioner. A series of in-services have helped staff nurses at Boston Children’s Hospital who are working in the peri-operative and orthopaedic arenas reconsider their practices and changes are occurring they are more aware of the burdens faced by these families, proactively involving families in a the wide array of available family-centered resources. Other nurses are planning related evidence-based practice projects. Dr. DiFazio values academic-practice partnerships and their role in preparing new nurses and nurse practitioners to embrace today’s challenges and tomorrow’s opportunities with aplomb. She has been and continues to serve as a faculty member to undergraduate senior synthesis students and as clinical preceptor to graduate pediatric nurse practitioner students. Her reputation precedes her with many students specifically requesting to work with her. In short, Dr.

DiFazio’s enthusiasm for research and evidence-based practice is contagious. She also is directly involved with supervising orthopaedic residents, including mentoring them in their scholarly projects, and with her nursing and medical colleagues at the University of Moscow, the Leningrad Children’s Hospital, and the Russian Nurses’ Association.

As a doctoral student, she has taken ‘the road less traveled’ in choosing a dissertation topic that required interprofessional support and trust, a longitudinal approach, and major commitments in time and money—but one that has significant implications for youths with severe CP and their families. Dr. DiFazio recognized, however, that she had the clinical expertise and research training needed to conduct such a rigorous study. A role model, she clearly is positioned to advance the AACN’s vision as a well-educated nursing professional posed to lead the delivery of quality health care and generate new knowledge to improve health and delivery of care services.

It is with pleasure that I nominate and wholeheartedly support Dr. DiFazio for this prestigious award.

Sincerely, Judith A. Vessey, PhD, PNP, MBA, FAAN Leila Holden Carroll Professor in Nursing

–  –  –

October 14, 2013 AACN Awards Committee American Association of Colleges of Nursing One Dupont Circle, NW Suite 530 Washington, DC 20036

Dear Awards Committee Members:

Please consider my dissertation study “Patient Centered Outcomes of Orthopedic Surgery in Children with Cerebral Palsy” for the American Association of Colleges of Nursing Excellence in Advancing Nursing Science Award. I successfully defended my dissertation in March 2013 and graduated from Boston College with a PhD in Nursing in May 2013. My dissertation study and research goals have the potential to advance nursing practice, foster interprofessional collaboration, educate healthcare professionals, and inform policy. My long term research and career goals are fully congruent with the vision and mission of AACN.

My clinical expertise in pediatric orthopedics, my educational background, and my commitment to family-centered nursing care placed me in the ideal position to have conducted my dissertation research. I fully appreciate that for the best clinical outcomes to be fully recognized, attention must be given not only the clinical efficacy of medical interventions, but also to the needs of patients and families during hospitalization, upon discharge, and after integration back into the community. It is only natural that my study focused on patient- and family-centered outcomes of orthopedic surgical interventions for children with severe cerebral palsy, including changes in patients’ health-related quality of life (HRQOL) and the burden experienced by their caregivers.

The incidence of children being diagnosed and surviving with cerebral palsy is increasing;

virtually all of the severely impaired children will undergo extensive orthopedic surgical interventions. Yet, little is known as to the impact of these surgeries beyond their ability to correct the orthopedic defect. It is therefore critical to begin to gain a better understanding of the broader outcomes of these major surgeries in this population. The knowledge gained from this longitudinal study is being used by nurses, physicians, and others on the interprofessional care team to guide patient education, set realistic expectations for the children and their families, and assist in surgical decision making and discharge planning. The study’s findings also have the potential to inform policy development and resource allocation.

In designing my research study, I collaborated with the research team in Canada that developed and validated the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) questionnaire, which was used in my study to measure HRQOL, an important component of patient-centered care. At that time, the CPCHILD was newly developed and I was

Difazio, Rachel

one of the first researchers to use it in a prospective study to capture HRQOL changes in children with severe cerebral palsy following orthopaedic surgical interventions. Therefore, I have the largest cohorts of patients followed over time using the CPCHILD. Because of this, I was invited to Toronto, Canada in May, 2013 to participate in a planning meeting for an international multi-center prospective longitudinal comparative cohort study to evaluate the outcomes of hip interventions in children with cerebral palsy. The planning meeting and initial work were funded by the Pediatric Orthopedic Society of North America. My study results will be foundational to this larger study and Boston Children’s Hospital will serve as one of the study sites.



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