Quality of Life Research

Introduction to special section on patient engagement

• Editorial

Carolyn E. Schwartz, Dennis A. Revicki

Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute

• Open Access
• Patient Engagement Special Section

Lori Frank, Laura Forsythe, Lauren Ellis, Suzanne Schrandt, Sue Sheridan, Jason Gerson, Kristen Konopka, Sarah Daugherty

Data collection challenges in community settings: insights from two field studies of patients with chronic disease

• Patient Engagement Special Section

Richard J. Holden, Amanda M. McDougald Scott, Peter L. T. Hoonakker, Ann S. Hundt, Pascale Carayon

Building new roles and relationships in research: a model of patient engagement research

• Patient Engagement Special Section

Nancy Marlett, Svetlana Shklarov, Deborah Marshall, Maria Jose Santana, Tracy Wasylak

Patient and public engagement in health-related quality of life and patient-reported outcomes research: what is important and why should we care? Findings from the first ISOQOL patient engagement symposium

• Patient Engagement Special Section

Kirstie Haywood, Jo Brett, Sam Salek, Nancy Marlett, Colin Penman, Svetlana Shklarov, Colleen Norris, Maria Jose Santana, Sophie Staniszewska

Beyond lip service and box ticking: how effective patient engagement is integral to the development and delivery of patient-reported outcomes

• Patient Engagement Special Section

K. Absolom, P. Holch, B. Woroncow, E. P. Wright, G. Velikova

Engaging patients to recover life projectuality: an Italian cross-disease framework

• Patient Engagement Special Section

Serena Barello, Guendalina Graffigna

Engaging stakeholders to develop a depression management decision support tool in a tribal health system

• Patient Engagement Special Section

Helene Starks, Jennifer L. Shaw, Vanessa Hiratsuka, Denise A. Dillard, Renee Robinson

Engaging Latina cancer survivors, their caregivers, and community partners in a randomized controlled trial: Nueva Vida intervention

• Patient Engagement Special Section

Christina L. Rush, Margaret Darling, Maria Gloria Elliott, Ivis Febus-Sampayo, Charlene Kuo, Juliana Muñoz, Ysabel Duron, Migdalia Torres, Claudia Campos Galván, Florencia Gonzalez, Larisa Caicedo, Anna Nápoles, Roxanne E. Jensen, Emily Anderson, Kristi D. Graves

Low-income minority patient engagement with automated telephonic depression assessment and impact on health outcomes

• Open Access
• Patient Engagement Special Section

Irene Vidyanti, Brian Wu, Shinyi Wu

Obese subjects involvement in a population-based survey: the use of information and communication technologies (ICT) to avoid stigmatization

• Patient Engagement Special Section

Benoit Pétré, Anne-Françoise Donneau, Céline Crutze, Eddy Husson, André Scheen, Michèle Guillaume

Gaps between patients’ reported current and preferred abilities versus clinicians’ emphases during an episode of care: Any agreement?

• Patient Engagement Special Section

Diane D. Allen, Carolina Talavera, Stephen Baxter, Kimberly Topp

Embedding the perceptions of people with dementia into quantitative research design

• Patient Engagement Special Section

Hannah M. O’Rourke, Wendy Duggleby, Kimberly D. Fraser

How recent health-related life events affected my perspective on quality-of-life research

• Commentary

Mirjam A. G. Sprangers

Genetic variations underlying self-reported physical functioning: a review

• Review

Melissa S. Y. Thong, Mirjam A. G. Sprangers, Jeff A. Sloan, Donald L. Patrick, Ping Yang, Cornelis J. F. van Noorden

Evaluation of cross-cultural adaptation and measurement properties of breast cancer-specific quality-of-life questionnaires: a systematic review

• Review

Indiara Soares Oliveira, Lucíola da Cunha Menezes Costa, Felipe Ribeiro Cabral Fagundes, Cristina Maria Nunes Cabral

“A gift wrapped in barbed wire” Positive and negative life changes after being diagnosed with inflammatory bowel disease

Rebecca Purc-Stephenson, Desirae Bowlby, S. T. Qaqish

Identifying changes in scores on the EORTC-QLQ-C30 representing a change in patients’ supportive care needs

Claire F. Snyder, Amanda L. Blackford, Jonathan Sussman, Daryl Bainbridge, Doris Howell, Hsien Y. Seow, Michael A. Carducci, Albert W. Wu

Predicting participation in meaningful activity for older adults with cancer

Mackenzi Pergolotti, Malcolm P. Cutchin, Hyman B. Muss

Insomnia, hypnotic use, and health-related quality of life in a nationally representative sample

Julieta Scalo, Pooja Desai, Karen Rascati

Health-related quality of life in women referred for bone density assessment: relationships with bone mineral density, fracture and co-morbidity

Sally Wilson, Christopher A. Sharp, Michael W. J. Davie

A confirmatory factor analysis of the Resilience Scale adapted to chronic pain (RS-18): new empirical evidence of the protective role of resilience on pain adjustment

Gema T. Ruiz-Párraga, Alicia E. López-Martínez, Rosa Esteve, Carmen Ramírez-Maestre, Gail Wagnild

Measuring caregiver outcomes in palliative care: a construct validation study of two instruments for use in economic evaluations

Renske Hoefman, Hareth Al-Janabi, Nikki McCaffrey, David Currow, Julie Ratcliffe

Cultural adaptation and psychometric assessment of Pain Catastrophizing Scale among young healthy Malay-speaking adults in military settings

• Brief Communication

F. H. Mohd Din, Victor C. W. Hoe, C. K. Chan, M. A. Muslan

Validation of the Care-Related Quality of Life Instrument in different study settings: findings from The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS)

J. E. Lutomski, N. J. A. van Exel, G. I. J. M. Kempen, E. P. Moll van Charante, W. P. J. den Elzen, A. P. D. Jansen, P. F. M. Krabbe, B. Steunenberg, E. W. Steyerberg, M. G. M. Olde Rikkert, R. J. F. Melis