A5039848185- Childhood Cancer Survivors' Quality of Life
- Cancer survivorship and care
- Family Support in Illness
- Breast Implant and Reconstruction
- Adolescent and Pediatric Healthcare
- Breast Cancer Treatment Studies
- Cleft Lip and Palate Research
- Glioma Diagnosis and Treatment
- Lymphatic System and Diseases
- Craniofacial Disorders and Treatments
- Body Contouring and Surgery
- Wound Healing and Treatments
- Reconstructive Surgery and Microvascular Techniques
- Diagnosis and Treatment of Venous Diseases
- Body Image and Dysmorphia Studies
- Pressure Ulcer Prevention and Management
- Retinopathy of Prematurity Studies
- Palliative Care and End-of-Life Issues
- Economic and Financial Impacts of Cancer
- Ubiquitin and proteasome pathways
- Blood disorders and treatments
- Health Systems, Economic Evaluations, Quality of Life
- Obesity and Health Practices
- Neurofibromatosis and Schwannoma Cases
- Facial Rejuvenation and Surgery Techniques
Brigham and Women's Hospital
2018-2024
Harvard University
2018-2024
Creative Commons
2023
New York Proton Center
2023
McMaster University
2011-2021
Impact
2017-2021
University Hospitals Birmingham NHS Foundation Trust
2021
University of Birmingham
2021
Boston University
2021
Memorial Sloan Kettering Cancer Center
2019
Recent studies have revealed that the majority of pediatric low-grade astrocytomas (PLGA) harbor BRAF-KIAA1549 (B-K) fusion gene resulting in constitutive activation RAS/MAPK pathway. However, clinical significance this genetic alteration is yet to be determined. We aimed test prognostic role B-K progression incompletely resected PLGA.We retrospectively identified 70 consecutive patients with "clinically relevant" PLGA. added 76 tumors diagnosed at our institution between 1985 and 2010 as...
<h3>BACKGROUND:</h3> Patients with cleft lip and/or palate can undergo numerous procedures to improve appearance, speech, dentition and hearing. We developed a cleft-specific patient-reported outcome instrument facilitate rigorous international measurement benchmarking. <h3>METHODS:</h3> Data were collected from patients aged 8–29 years at 30 hospitals in 12 countries between October 2014 November 2016. Rasch theory analysis was used refine the scales examine reliability validity. Normative...
Abstract Aim To develop a generic self‐management skills scale for use with adolescents diagnosed chronic health condition who are aged 12 to 18 years. Background There is lack of methodologically sound scales healthcare teams measure in conditions transitioning adult care. Methods Adolescents years broad range conditions, including neurodevelopmental were recruited from M ay A ugust 2013 nine outpatient clinics at c aster C hildren's H ospital ( anada). Thirty‐two participated cognitive...
Patient-reported outcome (PRO) instruments should be developed according to rigorous guidelines in order provide clinically meaningful, scientifically sound measurement. Understanding the methodology behind instrument development informs selection of most appropriate tool. This mixed methods protocol describes an internationally applicable PRO instrument, CLEFT-Q, for evaluating outcomes treatment cleft lip and/or palate (CL/P).
Objective: The goal of treatment for individuals with cleft lip and/or palate (CL/P) is to improve physical, psychological, and social health. Outcomes are rarely measured from the patient’s perspective. aim study was develop a conceptual framework patient-reported outcome (PRO) instrument clefts (CLEFT-Q) by developing an in-depth understanding issues that consider be important. Design: qualitative methodology interpretive description used. Setting, Participants, Intervention: We performed...
The CLEFT-Q is a new patient-reported outcome instrument designed to measure outcomes that matter patients. aim of this qualitative study was establish content validity the in patients who differ by age and culture.
<h3>Introduction</h3> Inherited bone marrow failure syndromes (IBMFSs) often have substantial phenotypic overlap, thus genotyping is critical for establishing a diagnosis. <h3>Objectives and methods</h3> To determine the genetic characteristics mutation profiles of IBMFSs, comprehensive population-based study that prospectively enrols all typical atypical cases without bias required. The Canadian Marrow Failure Study such study, was used to extract clinical information patients enrolled up...
Cleft lip and/or palate (CL/P) is a common congenital craniofacial anomaly that may negatively affect an individual's appearance, health-related quality of life, or speech. In Spain, Colombia, and Chile the overall prevalence CL/P ranges from 0.53 to 1.59 cases per 1000 live births. Currently, there no patient-reported outcome (PRO) instrument specific for patients with CL/P. The CLEFT-Q new PRO developed measure outcomes treatment in 8 29 years age aim this study was translate culturally...
Background: Measuring the patient perspective is important in evaluating outcomes of cleft care. Understanding how treatment vary depending on type may allow for better planning treatments, setting expectations, and more accurate benchmarking efforts. The CLEFT-Q a patient-reported outcome measure patients with lip and/or palate. Methods: 12 scales measuring appearance (i.e., face, nose, nostrils, lips, scar, teeth, jaws), function speech), health-related quality life psychological, school,...
Abstract Background A multiphased mixed-methods study was performed to develop and validate a comprehensive patient-reported outcome measure (PROM) for arm lymphedema in women with breast cancer (i.e., the LYMPH-Q Upper Extremity Module). Methods Qualitative interviews (January 2017 June 2018) were 15 elicit concepts specific after treatment. Data audio-recorded, transcribed, coded. Scales refined through cognitive (October Decemeber 16 patients input from 12 clinical experts. The scales...
Abstract Background The concept of “natural” after a facial aesthetic treatment represents an understudied area. We added scales to FACE-Q Aesthetics provide means measure this from the patient's perspective. Objectives objective study was develop and validate Aesthetic Natural module. Methods Concept elicitation interviews with people having minimally invasive treatments were conducted explore natural scales. Patient expert input refined scale content. An online sample (ie, Prolific) who...
Objective: The impact of hard-to-heal wounds extends beyond traditional clinical metrics, negatively affecting a patient's health-related quality life (HRQoL). Yet treatment outcomes are seldom measured from the perspective. purpose present study was to perform in-depth qualitative interviews with patients diagnosed varying types identify important them. Method: Participants were recruited wound care clinics in Canada, Denmark, Netherlands and US, included if they had (i.e., lasting ≥3...
Background: As the aesthetics field continues to innovate, it is important that outcomes are carefully evaluated. Objectives: To develop item libraries measure how skin looks and feels from patient perspective, is, SKIN-Q. Methods: Concept elicitation interviews were conducted data used draft SKIN-Q, which was refined with expert feedback. An online sample (i.e., Prolific) provided field-test data. Results: We 26 qualitative (88% women; 65% ≥ 40 years of age). A SKIN-Q formed revised input...
Abstract Purpose The BREAST-Q is the most used patient-reported outcome measure (PROM) in breast cancer surgery. purposes of this study were to re-examine content validity modules (mastectomy, lumpectomy and reconstruction) determine need for new scales. Methods Interviews conducted with women (Stage 0–4, any treatment), audio-recorded transcribed verbatim. Deductive (based on original conceptual framework) inductive (new codes from data) analysis approaches analyze data. number that mapped...
Abstract Background Survivors of childhood acute lymphoblastic leukemia (ALL) are at risk for overweight, predisposing them to long‐term morbidity. We examined the relationship between body mass index (BMI) and demographic lifestyle factors in a cohort ALL survivors. Procedure enrolled consecutive survivors who attended institutional AfterCare Clinic over 1‐year period. BMI (kg/m 2 ) diagnosis, end‐therapy, current time were calculated. classified as overweight/obese ( overweight group; age...
There is a need for advancements in health information technology that will transform how patient-reported outcomes (PRO) data are collected, reported, and used breast cancer care. The objective of this study was to develop an innovative customizable platform, called imPROVE support PRO uptake care.User-centered design agile development were employed. Recurrent stakeholder meetings with experts the field care, in-depth one-on-one qualitative interviews clinical sample patients cancer, focus...