Quality of Life Research

Introduction to special section: measuring what matters

• Editorial

Steven I. Blum, Sara Ahmed, Emuella Flood, Frans J. Oort, Carolyn E. Schwartz

Beyond study participants: a framework for engaging patients in the selection or development of clinical outcome assessments for evaluating the benefits of treatment in medical product development

• Special Section: Measuring What Matters (by invitation only)

Hilary Wilson, Ebony Dashiell-Aje, Milena Anatchkova, Karin Coyne, Asha Hareendran, Nancy Kline Leidy, Colleen A. McHorney, Kathy Wyrwich

Methods and impact of engagement in research, from theory to practice and back again: early findings from the Patient-Centered Outcomes Research Institute

• Open Access
• Special Section: Measuring What Matters (by invitation only)

Laura Forsythe, Andrea Heckert, Mary Kay Margolis, Suzanne Schrandt, Lori Frank

Moving from significance to real-world meaning: methods for interpreting change in clinical outcome assessment scores

• Special Section: Measuring What Matters (by invitation only)

Cheryl D. Coon, Karon F. Cook

Prioritizing research topics: a comparison of crowdsourcing and patient registry

• Special Section: Measuring What Matters (by invitation only)

Anjali R. Truitt, Sarah E. Monsell, Andrew L. Avins, David R. Nerenz, Sarah O. Lawrence, Zoya Bauer, Bryan A. Comstock, Todd C. Edwards, Donald L. Patrick, Jeffrey G. Jarvik, Danielle C. Lavallee

Development of a care guidance index based on what matters to patients

• Special Section: Measuring What Matters (by invitation only)

John H. Wasson, Laura Soloway, L. Gordon Moore, Paul Labrec, Lynn Ho

Measuring what matters MOST: validation of the Measure of Ovarian Symptoms and Treatment, a patient-reported outcome measure of symptom burden and impact of chemotherapy in recurrent ovarian cancer

• Special Section: Measuring What Matters (by invitation only)

Madeleine T. King, Martin R. Stockler, Rachel L. O’Connell, Luke Buizen, Florence Joly, Anne Lanceley, Felix Hilpert, Aikou Okamoto, Eriko Aotani, Jane Bryce, Paul Donnellan, Amit Oza, Elisabeth Avall-Lundqvist, Jonathan S. Berek, Jalid Sehouli, Amanda Feeney, Dominique Berton-Rigaud, Daniel S. J. Costa, Michael L. Friedlander

Presenting comparative study PRO results to clinicians and researchers: beyond the eye of the beholder

• Open Access

Michael Brundage, Amanda Blackford, Elliott Tolbert, Katherine Smith, Elissa Bantug, Claire Snyder, Neil K. Aaronson, Patricia A. Ganz, Ravin Garg, Michael Fisch, Vanessa Hoffman, Bryce B. Reeve, Eden Stotsky-Himelfarb, Ellen Stovall, Matthew Zachary

Self-rated health as a predictor of mid-term and long-term mortality in older Afro-Caribbeans hospitalised via the emergency department

Lidvine Godaert, C. Godard-Sebillotte, L. Allard Saint-Albin, L. Bousquet, I. Bourdel-Marchasson, J.-L. Fanon, M. Dramé

Prevalence of patient-reported gastrointestinal symptoms and agreement with clinician toxicity assessments in radiation therapy for anal cancer

Ashlyn Tom, Antonia V. Bennett, Diana Rothenstein, Ethel Law, Karyn A. Goodman

Effects of risk factors for and components of metabolic syndrome on the quality of life of patients with systemic lupus erythematosus: a structural equation modeling approach

Jeong-Won Lee, Ji-Hyoun Kang, Kyung-Eun Lee, Dong-Jin Park, Seong Wook Kang, Seung-Ki Kwok, Seong-Kyu Kim, Jung-Yoon Choe, Hyoun-Ah Kim, Yoon-Kyoung Sung, Kichul Shin, Sang-Il Lee, Chang Hoon Lee, Sung Jae Choi, Shin-Seok Lee

Health-related quality of life and its determinants in patients with metastatic renal cell carcinoma

• Open Access

S. de Groot, W. K. Redekop, M. M. Versteegh, S. Sleijfer, E. Oosterwijk, L. A. L. M. Kiemeney, C. A. Uyl-de Groot

Everyday life following hematopoietic stem cell transplantation: decline in physical symptoms within the first month and change-related predictors

• Open Access

Aleksandra Kroemeke, Małgorzata Sobczyk-Kruszelnicka, Zuzanna Kwissa-Gajewska

Combat exposure, emotional and physical role limitations, and substance use among male United States Army Reserve and National Guard soldiers

R. A. Hoopsick, B. M. Vest, D. L. Homish, G. G. Homish

Assessing health-related quality of life in patients with breast cancer: a reply to Maratia et al

• Commentary

Karin Ribi, Alan Coates, Lynette Blacher, Meredith M. Regan, Richard D. Gelber, Jürg Bernhard

The relationship of five boarding school experiences and physical health status among Northern Plains Tribes

• Brief Communication

Ursula Running Bear, Calvin D. Croy, Carol E. Kaufman, Zaneta M. Thayer, Spero M. Manson

Health-related quality of life, developmental milestones, and self-esteem in young adults with bleeding disorders

• Open Access

P. F. Limperg, L. Haverman, H. Maurice-Stam, M. Coppens, C. Valk, M. J. H. A. Kruip, J. Eikenboom, M. Peters, M. A. Grootenhuis

How is weight stigma related to children’s health-related quality of life? A model comparison approach

Veronica Guardabassi, Alberto Mirisola, Carlo Tomasetto

The roles of physical activity and sedentary behavior on Hispanic children’s mental health: a motor skill perspective

Xiangli Gu, M. Jean Keller, Karen H. Weiller-Abels, Tao Zhang

Perceived medication adherence barriers mediating effects between gastrointestinal symptoms and health-related quality of life in pediatric inflammatory bowel disease

James W. Varni, Robert J. Shulman, Mariella M. Self, Shehzad A. Saeed, George M. Zacur, Ashish S. Patel, Samuel Nurko, Deborah A. Neigut, James P. Franciosi, Miguel Saps, Jolanda M. Denham, Chelsea Vaughan Dark, Cristiane B. Bendo, John F. Pohl, James W. Varni, Jolanda Denham, Robert J. Shulman, Mariella M. Self, Deborah A. Neigut, Samuel Nurko, Ashish S. Patel, James P. Franciosi, Shehzad Saeed, George M. Zacur, Miguel Saps, Barbara Verga, John F. Pohl

Physical activity and health-related quality of life among schoolchildren from disadvantaged neighbourhoods in Port Elizabeth, South Africa

Marina Salvini, Stefanie Gall, Ivan Müller, Cheryl Walter, Rosa du Randt, Peter Steinmann, Jürg Utzinger, Uwe Pühse, Markus Gerber

Development and psychometric evaluation of the PROMIS Pediatric Life Satisfaction item banks, child-report, and parent-proxy editions

Christopher B. Forrest, Janine Devine, Katherine B. Bevans, Brandon D. Becker, Adam C. Carle, Rachel E. Teneralli, JeanHee Moon, Carole A. Tucker, Ulrike Ravens-Sieberer

Differential item functioning by language on the PROMIS® physical functioning items for children and adolescents

Ron D. Hays, José Luis Calderón, Karen L. Spritzer, Steve P. Reise, Sylvia H. Paz

Assessing responsiveness over time of the PROMIS® pediatric symptom and function measures in cancer, nephrotic syndrome, and sickle cell disease

Bryce B. Reeve, Lloyd J. Edwards, Byron C. Jaeger, Pamela S. Hinds, Carlton Dampier, Debbie S. Gipson, David T. Selewski, Jonathan P. Troost, David Thissen, Vaughn Barry, Heather E. Gross, Darren A. DeWalt

Assessing the measurement invariance of the Brief Multidimensional Students’ Life Satisfaction Scale in Chinese and American adolescents

Yifang Zeng, Yu Ling, E. Scott Huebner, Yushu He, Peng Fu

Cross-cultural adaptation and validation of the Danish version of the Short Musculoskeletal Function Assessment questionnaire (SMFA)

• Brief Communication

Marianne Lindahl, Signe Andersen, Annette Joergensen, Christian Frandsen, Liselotte Jensen, Eirikur Benedikz