Measuring Outcomes and Experiences of Chronic Wound Patients (The WOUND-Q).
Wounds represent an important health problem and challenge to patients, healthcare professionals and healthcare systems alike. Wounds vary greatly in their impact on patients in terms of recovery and return to usual activities and health-related quality of life. The WOUND-Q© is a new patient-reported outcome measure developed by our team to assess wound characteristics, health-related quality of life, and experience of care and treatment in patients with all types of chronic wounds in any anatomic location.
The WOUND-Q can be licensed at http://qportfolio.org.
Klassen AF, van Haren ELWG, van Alphen TC, Cano S, Cross KM, van Dishoeck AM, Fan KL, Michael Hoogbergen M, Orgill D, Poulsen L, Ahm Sørensen J, Squitieri L, Tsangaris E, Vasilic D, Pusic AL. International study to develop the WOUND-Q patient-reported outcome measure for all types of chronic wounds. Int Wound J. 2021 Mar 10. Online ahead of print.
Squitieri L, Tsangaris E, Klassen AF, van Haren ELWG, Poulsen L, Longmire NM, van Alphen TC, Hoogbergen MM, Sorensen JA, Cross K, Pusic AL. Patient-reported experience measures are essential to improving quality of care for chronic wounds: An international qualitative study. Int Wound J. 2020 Aug;17(4):1052-1061. Epub 2020 Apr 21.
Klassen A, van Haren EL, Cross K, Fan KL, Gibbons C, Hoogbergen MM, Longmire NM, Poulsen L, Sorensen JA, Squitieri L, Tsangaris E, van Alphen TC, van Dishoeck AM, Vasilic D, Pusic AL. International mixed methods study protocol to develop a patient-reported outcome measure for all types of chronic wounds (the WOUND-Q). BMJ Open. 2020 Mar 25;10(3):e032332.
LYMPH-Q UPPER EXTREMITY
Breast cancer treatment is the most common cause of upper extremity lymphedema in Western countries. Arm lymphedema is a debilitating diagnosis that may significantly diminish a patient’s health-related quality of life due to symptoms (e.g., swelling, pain, infection) and reduced arm function. To better understand and measure outcomes of arm lymphedema, a valid and reliable patient-reported outcome measure (PROM) was developed through in-depth and semi-structured qualitative interviews with women diagnosed with arm lymphedema following breast cancer treatment. Scales were refined through cognitive interviews with patients and clinical experts. Finally, a field test was performed in an international sample of 3222 women in the USA (through the Love Research Army) and Denmark.
The LYMPH-Q Upper Extremity Module can be licensed at http://qportfolio.org.
Klassen AF, Tsangaris E, Kaur MN, Poulsen L, Beelen LM, Jacobsen AL, Jørgensen MG, Sørensen JA, Vasilic D, Dayan J, Mehrara B, Pusic AL. Development and psychometric validation of a patient-reported outcome measure for arm lymphedema: LYMPH-Q upper extremity module. Ann Surg Oncol. 2021 Feb 26. Online ahead of print.
Beelen LM, van Dishoeck A-M, Tsangaris E, Coriddi M, Dayan JH, Pusic AL, Klassen A, Vasilic D. Patient-Reported Outcome Measures in Lymphedema: A Systematic Review and COSMIN Analysis. Ann Surg Oncol. 2021 Mar;28(3):1656-1668.
Measuring Patient-reported Outcomes in Bariatric Surgery (The BODY-Q).
In collaboration with Brigham Health’s Center for Metabolic and Bariatric Surgery (CMBS), our team established an international collaboration with the Netherlands and Denmark to develop and validate new scales that form the BODY-Q Eating Module. Scale content was derived from 63 patient interviews. Scale refinement included cognitive interviews with 17 patients and feedback from 19 experts. An international field test was conducted with patients from Canada, Denmark, the Netherlands and USA. Data was also obtained through Prolific, a global online community of members who are aged 18 years or older. Over 4000 (2057 Prolific and 1947 clinical) participants were enrolled in the field-test study and data were used to refine and finalize the scales.
The BODY-Q Eating Module can be licensed at http://qportfolio.org.
Mou D, DeVries CEE, Pater N, Poulsen L, Makarawung DJS, Wiezer MJ, van Veen RN, Hoogbergen MM, Sorensen JA, Klassen AF, Pusic AL, Tavakkoli A. BODY-Q patient-reported outcomes measure (PROM) to assess sleeve gastrectomy vs. Roux-en-Y gastric bypass: eating behavior, eating-related distress, and eating-related symptoms. Surg Endosc. 2020 Aug 19. Online ahead of print.
Development and validation of new scales to measure outcomes related to breast cancer and its treatment.
The BREAST-Q is a patient-reported outcome measure (PROM) for breast surgery patients developed by our team that is widely used nationally and internationally. We developed additional BREAST-Q scales to further expand its use and support innovation in reconstructive surgery.
1. BREAST-Q© Sensation Module.
Surgical innovation and the availability of cadaveric nerves grafts have offered potential return of breast sensation. To support outcomes research in this area, we have developed new scales that form the BREAST-Q© Sensation Module. Content was developed and refined from 36 qualitative and seven cognitive interviews with patients, and feedback from 18 experts. In collaboration with the Love Research Army, a field-test study was performed and 1204 members provided data to finalize the scales. The new scales measure breast sensation, quality of life impact, and breast symptoms.
2. BREAST-Q Animation Deformity Scale.
Implants have traditionally been placed underneath the pectoralis muscle (subpectoral). This approach to implant placement results in animation deformity, where the shape of the reconstructed breast changes or distorts when the pectoralis muscle contracts and the implant moves. Treatment options to mitigate animation deformity have advanced to include pre-pectoral implant placement. To better understand the impact of animation deformity and its treatments, our team recently finalized the development of the animation deformity scale for the BREAST-Q Reconstruction Module. Field-test data from 651 members of the Love Research Army were used to finalize the scale.
The BREAST-Q© Sensation Module and Animation Deformity Scale can be licensed at http://qportfolio.org.
Tsangaris E, Pusic AL, Kaur MN, Voineskos S, Bordeleau L, Zhong T, Vidya R, Broyles J, Klassen AF. Development and Psychometric Validation of the BREAST-Q Animation Deformity Scale for Women Undergoing an Implant-Based Breast Reconstruction After Mastectomy. Ann Surg Oncol. 2021 Feb 26. Online ahead of print.
Tsangaris E, Klassen AF, Kaur MN, Voineskos S, Bordeleau L, Zhong T, Broyles J, Pusic AL. Development and Psychometric Validation of the BREAST-Q Sensation Module for Women Undergoing Post-Mastectomy Breast Reconstruction. Submitted to Ann Surg Oncol.
Prediction of individual patient-reported outcomes at two-year follow-up using machine learning.
Post-surgical satisfaction with breasts is a key outcome for women undergoing cancer-related mastectomy and reconstruction. Current decision-making relies on group-level evidence, which may not offer the optimal choice of treatment for individuals. We developed and validated machine learning algorithms to predict individual post-surgical breast satisfaction using clinical, perioperative, and patient-reported data from 3058 women who underwent breast reconstruction due to breast cancer across 11 sites in North America. We trained and evaluated four algorithms (regularized regression, Support Vector Machine, Neural Network, Regression Tree) to predict significant changes in satisfaction with breasts at 2-year follow-up using the validated BREAST-Q measure. Machine learning algorithms were able to accurately predict changes in women’s satisfaction with breasts.
American Society of Clinical Oncology (ASCO) 2020 (https://www.onclive.com/view/asco-2020-top-kols-select-vital-studies-ahead-of-virtual-meeting).
Pfob A, Mehrara BJ, Nelson JA, Wilkins EG, Pusic AL, Sidey-Gibbons C. Towards Patient-Centered Decision-Making in Breast Cancer Surgery: Machine Learning to Predict Individual Patient-Reported Outcomes at 1-Year Follow-up. Ann Surg. 2021 Mar 18.
Sidey-Gibbons C, Pfob A, Asaad M, Boukovalas S, Lin YL, Selber JC, Butler CE, Offodile AC 2nd. Development of Machine Learning Algorithms for the Prediction of Financial Toxicity in Localized Breast Cancer Following Surgical Treatment. JCO Clin Cancer Inform. 2021 Mar;5:338-347.
Time-Driven Activity-Based Costing (TDABC) in Breast Cancer Care Delivery.
Accurate measurement of healthcare costs is required to assess and improve the value of oncology care. The purpose of this study was to determine the cost of breast cancer care provision across two collaborating health care organizations, Brigham and Women’s Hospital and Dana-Farber Cancer Institute (DFCI). We used time-driven activity-based costing (TDABC) to calculate the complete cost of breast cancer care, including initial treatment planning, chemotherapy, radiation therapy, surgical resection and reconstruction, and ancillary services (e.g., psychosocial oncology, physical therapy).
Nagra NS, Tsangaris E, Means J, Hassett MJ, Dominici LS, Bellon JR, Kaplan RS, Feeley TW Pusic AL. Time-Driven Activity-Based Costing (TDABC) in Breast Cancer Care Delivery. Submitted to Ann Surg Onc.
Improving Efficiency of Patient-reported Outcome Measurement with Computer-Adaptive Testing (CAT).
The PROVE Center led an initiative to make advanced computerized adaptive tests (CATs) available to surgical practitioners around the world. This work, conducted in collaboration with the University of Cambridge, has created a solution that allows the user access to a secure system for assessing PROs using CATs at no cost.
Harrison CJ, Geerards D, Ottenhof MJ, Klassen AF, Riff KWYW, Swan MC, Pusic AL, Sidey-Gibbons C. Computerised adaptive testing accurately predicts CLEFT-Q scores by selecting fewer, more patient-focused questions. J Plast Reconstr Aesthet Surg. 2019 Nov;72(11):1819-1824. Epub 2019 Jun 11.
Geerards D, van den Berg L, Pusic AL, Hoogbergen MM, Klassen AF, van der Hulst RRWJ, Sidey-Gibbons C. Deriving an overall appearance domain score by applying bifactor IRT analysis to the BODY-Q appearance scales. J Qual Life Res. 2020 Apr;29(4):1065-1072.
Geerards D, Klassen AF, Hoogbergen MM, van der Hulst RRWJ, van den Berg L, Pusic AL, Gibbons C. Streamlining the Assessment of Patient-Reported Outcomes in Weight Loss and Body Contouring Patients: Applying Computerized Adaptive Testing to the BODY-Q. J Plast Reconstr Surg. 2019 May;143(5):946e-955e.
Geerards D, Pusic A, Hoogbergen M, van der Hulst R, Sidey-Gibbons C. Computerized Quality of Life Assessment: A Randomized Experiment to Determine the Impact of Individualized Feedback on Assessment Experience. J Med Internet Res. 2019 Jul 11;21(7):e12212.
Understanding how patient-reported outcomes data are used by physicians within the Mass General Brigham Healthcare system.
In collaboration with the Patient-Reported Outcome Measures (PROMs) initiative at Mass General Brigham and the Massachusetts General Physicians Organization leadership, surveys and qualitative interviews were performed to better understand how PROMs are being used in clinical settings.
Implementation of a digital patient intake form for bariatric surgery.
In partnership with Dr. Jennifer Shin and Brigham Health’s Center for Weight Management and Wellness (CWMW), our team has designed and implemented a digital patient intake form for BWH bariatric surgery patients.