2024
Mass General Brigham’s Patient-Reported Outcomes Measurement System: A Decade of Learnings
This article describes the strategies that leaders at the Mass General Brigham (MGB) health system have used in launching a standardized patient-reported outcome measure (PROM) collection program in 2012, a major step in the value-based transformation of health care.
Unmet social needs (SNs) often coexist in distinct patterns within specific population subgroups, yet these patterns are understudied. The authors objective is to identify patterns of social needs (PSNs) and characterize their associations with health-related quality-of-life (HRQoL) and healthcare utilization (HCU).
The quality of patient-reported outcome measures (PROMs) used to assess the outcomes of primary hyperparathyroidism (PHPT), a common endocrine disorder that can negatively affect patients’ health-related quality of life due to chronic symptoms, has not been rigorously examined. This systematic review aimed to summarize and evaluate evidence on the measurement properties of PROMs used in adult patients with PHPT, and to provide recommendations for appropriate measure selection.
Selecting Patient-Reported Outcome Measures: “What” and “For Whom”
This article provides a framework of the different types of PROMs by organizing them into four categories based upon “what” is being measured and “from whom” the questions are asked: (1) condition-specific and domain-specific, (2) condition-specific and global, (3) universal and global, and (4) universal and domain-specific.
Readability analysis and concept mapping of PROMs used for headache disorders
As the health-care landscape has evolved toward a patient-centric model, numerous PROMs have been developed to capture treatment outcomes in patients with headache disorders. For these PROMs to advance our understanding of headache disorders and their treatment impact, they must be easy to understand (i.e., reading grade level 6 or less) and comprehensively capture what matters to patients with headache. The aim of this study was to (a) assess the readability of PROMs utilized in headache disorders literature, and (b) assess the comprehensiveness of PROMs by mapping their content to a health-related quality of life framework.
As the aesthetics field continues to innovate, it is important that outcomes are carefully evaluated. Concept elicitation interviews were conducted and data were used to draft the SKIN-Q, which was refined with patient and expert feedback. The SKIN-Q represents an innovative way to measure satisfaction with skin (face and body) in the context of minimally invasive treatments.
Despite the profound impact of SDOH on health outcomes, studies examining the effect of SDOH needs on HRQOL among surgical patients are limited. A retrospective study was conducted using responses from the SDOH needs assessment and the Patient-Reported Outcomes Measurement Information Systems Global Health instrument of adults seen in surgical clinics at a single institution.
Patient-reported outcome measures (PROMs) are increasingly administered in high-income countries to monitor health-related quality of life of breast cancer patients undergoing breast reconstruction. Although low- and middle-income countries (LMICs) face a disproportionate burden of breast cancer, little is known about the use of PROMs in LMICs. This scoping review aims to examine the use of PROMs after post-mastectomy breast reconstruction among patients with breast cancer in LMICs.
We describe development of a short health-related quality of life measure, the patient-reported outcomes measurement information system® (PROMIS®)-16 Profile, which generates domain-specific scores for physical function, ability to participate in social roles and activities, anxiety, depression, sleep disturbance, pain interference, cognitive function, and fatigue.
The long-term impact of BS with or without BCS has not been established using rigorously developed and validated patient-reported outcome measures (PROM). The BODY-Q is a PROM developed to measure changes in HRQL and satisfaction with appearance in patients with BS and BCS.
Barriers to the Use of Patient-Reported Outcome Measures in Low- and Middle-income Countries
In the field of plastic surgery, many operations are performed primarily to improve quality of life, rendering the administration of PROMs particularly relevant. Despite the importance of PROMs, their use in low- and middle-income countries (LMICs) continues to be limited. Although further research is needed to comprehensively understand this issue, we discuss potential barriers of PROM use in LMICs.
“I Want to Look Natural”: Development and Validation of the FACE-Q Aesthetics Natural Module
The concept of natural after a facial aesthetic treatment represents an under-studied area. We added scales to FACE-Q Aesthetics to provide a means to measure this concept from the patient’s perspective. Concept elicitation interviews with people having minimally invasive treatments were conducted to explore the natural concept and develop scales.
Identifying health-related quality of life concepts to inform the development of the WOUND-Q
The impact of hard-to-heal wounds extends beyond traditional clinical metrics, negatively affecting a patient’s health-related quality of life (HRQoL). Yet treatment outcomes are seldom measured from the patient’s perspective. The purpose of the present study was to perform in-depth qualitative interviews with patients diagnosed with varying types of hard-to-heal wounds to identify outcomes important to them.
imPROVE is a new Health Information Technology platform that enables systematic patient-reported outcome measure (PROM) collection through a mobile phone application. The purpose of this study is to describe our initial experience and approach to implementing imPROVE among breast cancer patients treated in breast and plastic surgery clinics.
BODY-Q is a rigorously developed patient-reported outcome measure designed to measure outcomes of weight loss and body contouring patients. The aim of this study was to examine the psychometric properties of BODY-Q in the normative population.
Safety and Sustainability: Optimizing Outcomes and Changing Paradigms in Global Health Endeavors
This report focuses on cultural competence and humility, international collaboration, and the use of technology and innovation, all of which are needed to promote sustainability and patient safety, within global surgery efforts.
Patient centeredness is key to generating meaningful data and ensuring ongoing engagement in clinical research. In upper extremity lymphedema (LE), comprehensive PROMs that measure a range of HRQL concerns, especially psychosocial well-being, should be considered.
In this report, elucidate facilitators, barriers, and key lessons regarding the implementation of system-wide clinical patient-reported outcome measure (PROM) programs among United States (US) healthcare leaders.
Patient-Reported Outcome Measures in Gender-Affirming Surgery
PROMs that are specific to gender-affirming care (including surgery), such as the GENDER-Q, can be used to educate patients, align patients’ goals and preferences with realistic expectations about the surgical procedures’ purposes and outcomes, and conduct comparative effectiveness research.
The LARY-Q is a novel PROM designed to assess outcomes associated with total laryngectomy. The next step involves a field test study with a heterogenous sample of patients to assess the psychometric properties of the LARY-Q and perform item reduction.
The BREAST-Q is the most used patient-reported outcome measure (PROM) in breast cancer surgery. The purposes of this study were to re-examine the content validity of BREAST-Q cancer modules (mastectomy, lumpectomy and reconstruction) and to determine the need for new scales.
Sensory recovery of the breast is a compelling frontier in comprehensive postmastectomy breast reconstruction. This study uses the BREAST-Q Sensation Module to evaluate the differences in women who underwent an alloplastic versus autologous breast reconstruction.
The impact of the COVID-19 pandemic on psychological well-being will likely be long-lasting. This study assesses the psychological well-being of the United States general population during the early phase of the COVID-19 pandemic using patient-reported outcome measures.
General population normative scores for interpreting the BODY-Q
The BODY-Q is a patient-reported outcome measure that assesses patient-reported health outcomes in patients undergoing weight loss and/or body contouring surgery following massive weight loss. Normative values for the BODY-Q were determined to improve data interpretation and enable comparisons.
The aim of this study was to reach consensus on the symptoms most frequently associated with breast implant illness, which will subsequently inform the development of a symptom severity scale.
Enhancing Patient-Centered Surgical Care With Mobile Health Technology
In this review, we discuss experiences and future opportunities to use mHealth to enhance patient-centered surgical care.
There is a need for advancements in health information technology that will transform how patient-reported outcomes data are collected, reported, and used in breast cancer care. The objective of this study was to develop an innovative and customizable platform, called imPROVE to support PRO uptake in breast cancer care.
The purpose of this study was to identify and understand the issues that are relevant to patients with hand conditions. The data were used to develop a patient-reported outcome measure for adults with hand conditions, the HAND-Q and refine it with input from patients and clinician experts.
Patient-reported outcomes are used increasingly in routine clinical care, health policymaking, reimbursements, and quality improvement. Less is known regarding PRO implementation in routine clinical care for diverse and underrepresented patient populations.
Prioritizing Health Equity in Patient-reported Outcome Measurement to Improve Surgical Care
Patient- centered markers of care can be useful, to not only in reliably identify and track health disparities, but can inform effective interventions and policies to mitigate them.
The aim of this study is to understand how surgeons perceive value in PROMs. We conducted an exploratory qualitative study to understand the perceived value of PROMs from the perspective of surgeons in various subspecialties.
Facial vascularized composite allotransplantation (fVCA) is a life-enhancing procedure performed to improve health-related quality of life. A systematic literature review was performed to identify and appraise the content of PROMs used in fVCA.
The objective of this study was to assess the impact of sentinel lymph node dissection (SLND) and axillary lymph node dissection (ALND) on the health-related quality of life of women diagnosed with BCRL using a condition specific patient-reported outcome measure, the LYMPH-Q Upper Extremity (UE) module.
Time-Driven Activity-Based Costing in Breast Cancer Care Delivery
Using time-driven activity-based costing the cost of complete breast cancer care depended on (1) treatment protocols; (2) patient choice of reconstruction; and (3) the need for ancillary services (e.g., physical therapy). Understanding the actual costs and cost drivers of breast cancer care delivery may better inform resource utilization to lower the cost and improve care quality.
A Review of PROM Implementation in Surgical Practice
For surgeons, PROMs can provide valuable insight into changes in patient’s health-related quality of life before and after surgical interventions. Despite consensus within the surgical community regarding the promise of PROMs, this review catalogued the real-world implementation of PROMs in surgical care.
The BREAST-Q is a condition-specific patient-reported outcome measure for women with breast cancer. This study developed new BREAST-Q scales to measure Cancer Worry, Fatigue and Impact on Work.
The BREAST-Q is a patient-reported outcome measure that can be used to evaluate outcomes of breast cancer treatments; however, it previously lacked scales to measure breast sensation. This paper outlines the development and validation of the BREAST-Q Sensation Module.
A multi-phased mixed-methods study was performed to develop and validate a comprehensive patient-reported outcome measure for arm lymphedema in women with breast cancer (i.e., the LYMPH-Q Upper Extremity Module).
To assess the impact of animation deformity on health-related quality of life, a content-specific, valid, and reliable patient-reported outcome measure was developed. This report describes the development and validation of the BREAST-Q Animation Deformity scale.
Patient-reported outcome measures for chronic wounds mainly focus on specific types of wounds. Our team developed the WOUND-Q for use with all types of wounds in any anatomic location.
The BODY-Q Chest Module: Further Validation in a Canadian Chest Masculinization Surgery Sample
The BODY-Q Chest module is a patient-reported outcome measure that measures patient satisfaction with how the chest and nipples look. This study examined the psychometric performance of the BODY-Q Chest module in a new chest masculinization surgery sample.
The BODY-Q Cellulite Scale: A Development and Validation Study
Cellulite is a localized metabolic disorder of the subcutaneous tissue. The authors sought to develop and field test a new BODY-Q cellulite scale to measure the appearance of cellulite.
No breast cancer-specific preference-based measures (PBM), and the generic PBMs fail to capture the unique concerns of women with breast cancer (e.g., body image, appearance, treatment-specific adverse effects). This study developed a breast cancer-specific PBM, the BREAST-Q Utility module.
Patient-Reported Outcome Measures in Lymphedema: A Systematic Review and COSMIN Analysis
Patient-reported outcome measures can give valuable insight into the impact of lymphedema on a patient’s quality of life and can play an essential role in treatment decisions. This study identified PROMs used to assess health-related quality of life in patients with lymphedema; and assessed the quality of the lymphedema-specific PROMs.
This qualitative study identified patient experiences and health care processes that impact quality of care among patients with chronic wounds.
Development and Validation of the BREAST-Q Breast-Conserving Therapy Module
This study developed and validated a new BREAST-Q module to address the unique concerns of patients undergoing breast-conserving therapy.
This mixed method study describes the protocol for an international collaboration to develop and validate a new patient reported outcome measure called the WOUND-Q for adults with chronic wounds.
The study determined the association of patient-reported experiences and risk-adjusted surgical outcomes among group practices using ACS NSQIP data.
This Phase 1 protocol describes a mixed-methods study to develop and validate the descriptive health state classification system for a breast cancer-specific PBM, called the BREAST-Q Utility module.
Assessments of surgical quality should consider both surgeon and patient perspectives simultaneously. Focusing on patients undergoing major gastrointestinal cancer surgery, this study characterized hospitals, and their patients, on both these axes of quality.
The BODY-Q is a patient self-reported outcome measure developed for patients who undergo weight loss or body contouring. Based on patient and expert feedback, several new appearance scales were recently added for men undergoing chest contouring surgery and a stretch marks scale.
CLEFT-Q: Detecting Differences in Outcomes among 2434 Patients with Varying Cleft Types
The CLEFT-Q is a patient-reported outcome measure for patients with cleft lip and/or palate. The 12 CLEFT-Q scales measuring appearance, function, and health-related quality of life were field tested in a cross-sectional study in 30 centers in 12 countries.
The authors identified barriers to collection of PRO data from different locations (home or cosmetic surgery office) by means of different modes (paper vs e-PROM) from the perspective of patients, plastic surgeons, and clinic administrative staff. The study also explored patient preferences for the design of electronic platforms.
Nipple-sparing mastectomy and immediate reconstruction has become increasingly popular for prophylactic and therapeutic indications. The authors developed a new scale measuring nipple outcomes by adapting nipple reconstruction questions from the BREAST-Q breast reconstruction module.
Development of the BODY-Q Chest Module Evaluating Outcomes following Chest Contouring Surgery
The BODY-Q is a patient-reported outcome instrument designed for weight loss and/or body contouring. The authors described the development of a new module for masculinizing chest contouring surgery.
This phase I protocol describes an international collaboration between investigators in Canada, Denmark, the Netherlands and the USA who have coalesced to develop a new PROM (ie, the GENDER-Q) to evaluate outcomes of psychological, hormonal and surgical gender-affirming treatments.
Development of a New Patient-reported Outcome Measure for Ear Conditions: The EAR-Q
This study described the development of 2 ear-specific scales designed to measure outcomes important to children and young adults with ear conditions, including microtia and prominent ears.
A consequence of bariatric surgery is redundant skin for most patients. The authors measured health-related quality of life and appearance following bariatric surgery in relation to weight loss, excess skin, and need for body contouring.
Patients with cleft lip and/or palate can undergo numerous procedures to improve appearance, speech, dentition and hearing. The authors developed a cleft-specific patient-reported outcome instrument to facilitate rigorous international measurement and benchmarking.
This study developed a conceptual framework for a patient-reported outcome measures for individuals with clefts, called the CLEFT-Q, by developing an in-depth understanding of issues that patients consider to be important.
The CLEFT-Q is a new patient-reported outcome instrument designed to measure outcomes that matter to patients. This qualitative study established content validity of the CLEFT-Q in patients who differ by age and culture.
This mixed methods protocol describes the development of an internationally applicable patient reported outcome measure, the CLEFT-Q, for evaluating outcomes of treatment for cleft lip and/or palate (CL/P).