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imPROVE Breast Cancer Care

Drs. Andrea Pusic, Tari King and teams are leading an initiative to develop and implement a new electronic platform called imPROVE Breast Cancer Care. The imPROVE project is being conducted in collaboration with breast cancer care providers, patients and patient advocates at Brigham and Women’s Hospital (BWH) and Dana Farber Cancer Institute (DFCI), as well as members of the Harvard Business school (HBS) and the International Consortium of Outcomes Research (ICHOM). imPROVE consists of a patient-facing web-application and clinician- and administrative-facing portals, developed through iterative cycles of feedback from patients and key stakeholders. Over the past 18 months, our team has worked closely with our IT vendor (ADK Group) and key stakeholders to refine the content and build the platform. We have held 7 multidisciplinary stakeholder meetings with 24 experts in the field of breast cancer care (3 patient advocates, 6 breast and plastic surgeons, 4 medical oncologists, 3 radiation oncologists, 1 anaesthesiologist, 2 nurses, 5 resident and researchers), 3 Harvard Business School affiliates, with expertise in value-based healthcare, and 4 product developers/designers. Individual patient interview with 24 patients and two focus groups with 12 members of the DFCI Patient Family Advisory Council (PFAC) have also been performed. Findings from these meetings, interviews, and focus groups were used to generate design ideas, including the features, functionalities and content for the platform. Feedback was obtained in an iterative manner and brought back to our IT developers for refinement of the platform. Starting September 2020, we began user testing and implementation of the patient-facing web application within the Breast Surgery service at DFCI. We will also continue to build and implement the clinician- and administrative-facing portals over the coming year.

Primary Contact
Elena Tsangaris, PhD

Facial transplant surgery seeks to restore function as well as improve psychological health and social participation for patients who have experienced catastrophic injuries. Despite high clinician-reported success rates, the lack of a validated PROMs that captures important concepts for these patients makes it impossible to accurately measure the extent to which these operations improve quality of life from the patient perspective. The objective of this project is to develop and validate a patient-reported outcome measure specific for face vascularized composite tissue candidates and recipients. To-date, our team has conducted a systematic literature review to identify PROMs that are currently being used to measure outcomes in this patient population and develop a preliminary conceptual framework (manuscript in preparation). We have also performed in-depth qualitative and cognitive interviews with three post-operative patients. Qualitative interviews were conducted using a semi-structured interview guide and cognitive interviews involved the review of existing scales from our teams FACE-Q Head and Neck Cancer and Craniofacial Modules, using the think-aloud approach. Qualitative and cognitive interviews will continue with pre- and post-operative patients until saturation of concepts is achieved.

Primary Contact
Elena Tsangaris, PhD

Development of a Condition-Specific Patient-Reported Outcome Measure for Patients Undergoing Vascularized Composite Tissue Allotransplantation of the Face
Development of a Condition-Specific Patient-Reported Outcome Measure for Patients With Chronic Headaches

Headaches impose a tremendous burden on ones’ quality of life, including their physical and cognitive function. Traditionally, treatment for headaches has involved preventative and abortive medications, opioids, injectables and medical devices. More recently, surgical techniques have evolved to decompress the peripheral sensory nerves around the skull to improve the frequency, severity and duration of headaches. Trigger site deactivation surgery for headaches is available for patients who have failed conservative treatment and who meet other anatomic and clinical characteristics. To understand the effectiveness of headache surgery and its impact on one’s quality of life, there is a need for a new patient-reported outcome measure (PROMs). Our team is developing a new PROM to measure outcomes of headache treatment.

Primary contact
Lisa Gfrerer
Elena Tsangaris, PhD

Hormone treatment and gender-affirming surgery provided to transgender and gender diverse people can dramatically change how the face, body and genitals look and function. However, a critical barrier to measuring outcomes for such gender-affirming healthcare is the lack of a patient-reported outcome measure (PRO). To address this unmet need, the Canadian Institute of Health Research (CIHR) has provided Dr. Anne Klassen, our PROVE Center collaborator at McMaster University, with  grant funding ($2,080,000 CDN) to perform an international multiphase program of research to develop and implement a patient-reported outcome measure for gender-affirming treatments (GENDER-Q) .  This Foundation award will be used to cover the development of a PROM for gender-affirming treatment (GENDER-Q) and its implementation into clinical practice. The GENDER-Q will provide a comprehensive set of independently functioning scales that cover concepts such as appearance, body image, physical, sexual and psychosocial function. The PROVE Center will be a full partner in this program of research with funding provide for up to 4 PROVE Center postdoctoral research fellows.

Primary contact
Manraj Kaur

Development and Implementation of a Patient-Reported Outcome Measure for Gender-Affirming Treatments (GENDER-Q)
Understanding Health-Related Quality of Life and Psychological Well-Being During the Coronavirus Pandemic

The coronavirus pandemic has resulted in unprecedented, sudden interruptions or alterations to the general population’s lifestyle, fundamentally altering how Americans live their lives. These sudden changes may impose significant consequences on ones’ overall health-related quality of life (HRQOL) and psychological well-being. This study aims to understand the impact of coronavirus on self-reported HRQOL and psychological well-being (depression and anxiety), and to identify factors associated with and the experiences of stigma. HRQOL and psychological wellbeing were assessed using PROMIS 10 Global Health Questionnaire, Patient Health Questionnaire 9 item (PHQ-9) and Generalized Anxiety Disorder 7-item (GAD-7). In May 2020, the baseline survey was distributed through Prolific, an online community of members from around the world who are aged 18 years or older. Over 2000 participant provided data and analysis and manuscript preparation are currently underway. We will also continue to prospectively survey this patient population over time.

Primary contact
Elena Tsangaris
Manraj Kaur
Janina Kueper

Understanding “what matters most” to older adults considering surgical interventions has been recognized as a priority research area for the American College of Surgeons. This project has two complementary components: (1) to explore existing patient-reported data (PRD) that has been collected through the Patient Reported Outcome Measures (PROMs) initiative at Mass General Brigham from older adults; and, (2) to conduct semi-structured qualitative interviews with patients to identify common needs and expectations among older adults considering surgery. Through collaboration with our colleagues in the Department of Urology, particularly with surgeon and health services researcher Dr. Matthew Mossanen, we’ve explored available PRD from older adults undergoing radical cystectomy for bladder cancer, an operation with significant morbidity and mortality. The findings from this exploratory analysis will be presented at the International Society of Quality of Life Research (ISOQOL) 27th Annual Conference in October 2020. Through this work, we have determined that a significant cohort of patients did not complete their pre- and post-operative PRD. These findings triggered a new study to evaluate barriers to PRD completion. A scoping review will be conducted to identify literature reporting implementation strategies to generate higher collection rates and best practices. Second, continuing our collaboration with the Department of Urology, we will identify patients who do not complete PROMs prior to or during their pre-operative surgical visit to understand the barriers to PRD completion.

Primary contact
Claire Sokas

Understanding Patient-Reported Outcomes in Older Adults Undergoing Elective Surgery
INSPiRES – Innovative System for Patient-Reported Experience in Surgery

The objective of this study is to evaluate breast sensation and cold sensitivity after immediate implant or autologous breast reconstruction following mastectomy. Breast sensation is being evaluated using the new BREAST-Q Sensation Module (described above). We are also collecting infrared (IR) thermal images of participant breasts both pre- and 6-months post- immediate breast reconstruction (implant or autologous). Data will be used to evaluate correlations between the IR thermal images and the BREAST-Q sensation scale. Dr. Aska Arnautovic (PROVE Center fellow) was awarded $72,500 from the Plastic Surgery Foundation to support this research as a training grant. To date, 68 participants (45 implant, 18 autologous, and 5 undecided) have been enrolled. Unfortunately, due to the COVID-19 pandemic, recruitment has been paused. We plan to resume recruitment for the study once human subject research at Partners Healthcare is cleared to restart.

Primary contact
Jessica Means
Joanna O’Gorman

Our team has successfully developed a new machine learning-enhanced platform called INSPiRES (see bwhexperience.com). The INSPiRES team includes members of the PROVE Center and Department of Surgery. The project was funded by Brigham BCRISP ($50,000 USD). INSPiRES will be used to collect and report patient-reported experience data throughout the Department of Surgery (DOS). Data collected through this system will be used to facilitate evidence-based improvement initiatives within the DOS. INSPiRES Version 1 was launched in fall 2019. Over 70 content-rich comments from 9 divisions was obtained from our initial implementation. Comments highlighted actionable issues relating to racial discrimination, waiting times, communication, and cleanliness. INSPiRES Version 2 was launched in spring 2020, with enhanced reporting and analytics; and a beta version was rolled out in a stepwise manner with support from Medumo. INSPiRES Version 2 has been utilized across all divisions within the DOS (e.g., bariatrics, thoracic, ENT, plastics, breast, dentistry, urology) at BWH Main Campus and South Shore. Patients invited via a text link to complete the INSPiRES survey upon leaving their clinic appointments. Over 400 patients have provided comments relating to their experience during their clinic visit. This initiative is ongoing, with regular meetings held between the PROVE Center team and DOS representatives. Finally, together with Dr. Smink, the Director of General Surgery Residency, our team is exploring options for using INSPiRES to assess the experience for surgical trainees during their training at BWH.

Primary contact
Joanna O’Gorman

Evaluating Cold Sensitivity Following Autologous and Implant-Based Breast Reconstruction using Patient Reported Outcomes and Infrared Thermal Imaging
Social Determinants of Health, Social Risk Factors, and Patient Reported Outcomes

A collaboration between the PROVE Center and the Mass General Brigham Patient Reported Outcome Measures team, we aim to evaluate the impact of social determinants of health and social risk factors through the use of patient reported outcome measures collected within the Mass General Brigham network to assess surgical access and clinical outcomes.

 Primary contact
Gezzer Ortega

Under the co-mentorship of Drs. David W. Bates and Andrea L. Pusic, Dr. Gezzer Ortega, MD, MPH recently submitted an application for an NIH National Institute on Minority Health and Health Disparities K23 Mentored Patient-Oriented Research Career Development Award. The proposed research uses evidenced-based assessments of socio-ecological models of access to and outcomes of surgical care for patients with limited English proficiency (LEP). A secondary aim of this work will be to evaluate a mobile medical interpretation application that can potentially be scaled for broader impact. The findings of this research have the potential to inform the design and implementation of future health information technology interventions to support LEP patients throughout their care trajectory.

Primary contact
Gezzer Ortega

Improving Outcomes for Surgical Patients with Limited English Proficiency
Scaling and Spreading Electronic Capture of Patient-Reported Outcomes Using a National Surgical Quality Improvement Program (NSQIP)

Incorporating the patient’s perspective to evaluate surgical quality has yet to be achieved in the U.S. and represents a tremendous unrealized opportunity for continuous quality improvement. This is a $1.5M AHRQ R18 grant for which Dr. Pusic will serve as co-PI with Clifford Y. Ko, MD (American College of Surgeons) and Larissa Temple, MD (University of Rochester Medical Center). The study aims to scale and spread the routine, health IT-enabled collection of PROs from ambulatory surgical patients using a well-established national surgical quality improvement registry program. To date, over 2400 patients in 9 centers have contributed data. Results of this research will accelerate the uptake of using PROs for quality improvement across the US, identify best practices for implementation of such a program, and explore whether PROs can reliably identify quality improvement opportunities.

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