Articles

Developing a patient-driven chronic obstructive pulmonary disease (COPD) research agenda in the U.S.

To document a generalizable process for developing a patient-prioritized chronic obstructive pulmonary disease (COPD) research agenda and to provide an overview of domains that were developed in response to pe...

Authors: Inga Gruß, Gretchen M. McCreary, Ilya Ivlev, Mary Ellen Houlihan, Barbara P. Yawn, Cara Pasquale, William Clark and Richard A. Mularski

Development of the Near Vision Presbyopia Task-based Questionnaire for use in evaluating the impact of presbyopia

Presbyopia is a progressive condition that reduces the eye’s ability to focus on near objects with increasing age. After a systematic literature review identified no existing presbyopia-specific patient-report...

Authors: Elaheh Shirneshan, Cheryl D. Coon, Nathan Johnson, Jonathan Stokes, Ted Wells, J. Jason Lundy, David A. Andrae, Christopher J. Evans and Joanna Campbell

Characterizing the quality-of-life impact of Duchenne muscular dystrophy on caregivers: a case-control investigation

This study examined the impact of Duchenne muscular dystrophy (DMD) on family-member caregivers in terms of quality of life, life stress, and indirect costs, as compared to a stratified comparison group of par...

Authors: Carolyn E. Schwartz, Roland B. Stark, Ivana F. Audhya and Katherine L. Gooch

The sensory-reactivity PROM set: identification of a parent reported outcome measure set for autism spectrum disorder

Most children with autism spectrum disorder (ASD) suffer from aberrant responses to sensory stimuli that significantly impact the quality of life. To develop sensory interventions, individually tailored outcom...

Authors: Dorinde M. van Andel, Henk F. van Stel, Floortje E. Scheepers, Kim J. Oostrom, Lotte Haverman and Hilgo Bruining

Translation and adaptation of the EORTC QLQ-LC 29 for use in Chinese patients with lung cancer

The latest European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire-Lung Cancer 29 (QLQ-LC29) has been translated and validated in several languages but not yet in simpl...

Authors: Wei Dai, Yaqin Wang, Yangjun Liu, Xing Wei, Ahmed M. Y. Osman, Cecilia Pompili, Michael Koller, Qifeng Wang, Yi Wang, Jun Ge, Tianpeng Xie and Qiang Li

Health-related quality of life for adults living with hepatitis B in the United States: a qualitative assessment

In 2019, an estimated 296 million people were living with chronic hepatitis B virus (HBV) globally with approximately 2.4 million living within the United States. Those living with HBV require years if not dec...

Authors: Catherine Freeland, Rhea Racho, Maureen Kamischke, Kate Moraras, Evangeline Wang, Chari Cohen and Stuart Kendrick

Cancer follow-up supported by patient-reported outcomes in patients undergoing intended curative complex surgery for advanced cancer

Patient activation (PA) and Patient Involvement (PI) are considered elements in good survivorship. We aimed to evaluate the effect of a follow-up supported by electronic patient-reported outcomes (ePRO) on PA ...

Authors: Sissel Ravn, Henriette Vind Thaysen, Victor Jilbert Verwaal, Lene Seibæk and Lene Hjerrild Iversen

Structural validity of the Arabic version of the disabilities of the Arm, Shoulder and Hand (DASH) using Rasch measurement model

The disabilities of the arm, shoulder and hand (DASH) is a commonly used region-specific patient-reported outcome measure (PROM) that quantify upper extremity function (activity limitation) and symptoms. Curre...

Authors: Ali H. Alnahdi

Development and equivalence of new faces for inclusion in the Childhood Asthma Control Test (C-ACT) response scale

Accurate symptom monitoring is vital when managing pediatric asthma, providing an opportunity to improve control and relieve associated burden. The CHILDHOOD ASTHMA CONTROL TEST (C-ACT) has been validated for ...

Authors: Kate Sully, Nicola Bonner, Helena Bradley, Robyn von Maltzahn, Rob Arbuckle, Louise Walker-Nthenda, Aoife Mahon, Brandon Becker, Louise O’Hara, Katherine B. Bevans, Mark Kosinski, Robert S. Zeiger, Ross Mackenzie and Linda Nelsen

Development of a conceptual model for research on cyclical variation of patient reported outcome measurements (PROMs) in patients with chronic conditions: a scoping review

Although circadian, seasonal, and other cycles have been observed for a number of chronic conditions, their impact on patient reported outcomes measurements (PROMs) has not been systematically explored, render...

Authors: A. F. Davey, J. Coombes, I. Porter, C. Green, A. J. Mewse and J. M. Valderas

Personalized outcomes for hip and knee replacement: the patients point of view

Patient reported outcome measures (PROMs) are increasingly being incorporated into clinical and surgical care for assessing outcomes. This study examined outcomes important to patients in their decision to hav...

Authors: Robin R. Whitebird, Leif I. Solberg, Jeanette Y. Ziegenfuss, Stephen E. Asche, Christine K. Norton, Marc F. Swiontkowski, Steven P. Dehmer and Elizabeth S. Grossman

Correction to: Patient-reported outcome measures in the care of in-centre hemodialysis patients

Authors: Sara N. Davison, Scott Klarenbach, Braden Manns, Kara Schick-Makaroff, Robert Buzinski, Bonnie Corradetti, Hilary Short and Jefrey A. Johnson

Understanding the visual function symptoms and associated functional impacts of phakic presbyopia

Presbyopia is defined as the age-related deterioration in the ability to focus on close objects, causing difficulty with near vision tasks. The study aim was to understand the lived experience of phakic presby...

Authors: Sarah Bentley, Amy Findley, Sima Chiva-Razavi, Christel Naujoks, Francesco Patalano, Chloe Johnson, Rob Arbuckle and James S. Wolffsohn

Translation and cultural validation of the University of Washington Caregiver Stress and Benefit Scales

English versions of the University of Washington Caregiver Stress (UW-CSS) and Benefit (UW-CBS) Scales were developed in the United States (US) to measure impact on caregivers of caring for a child/children. C...

Authors: Dagmar Amtmann, Alyssa M. Bamer, Rana Salem, Arnold R. Gammaitoni, Bradley S. Galer and Mark P. Jensen

Hepatic schistosomiasis, upper gastrointestinal bleeding, and health related quality of life measurements from the Albert Nile Basin

Health related quality of life measurements are vital elements of public health surveillance that uncover unmet health needs and predict the success of health interventions. We described health related quality...

Authors: Christopher K. Opio, Francis Kazibwe, Lalitha Rejani, Narcis B. Kabatereine and Ponsiano Ocama

Burden of mental health symptoms and perceptions of their management in in-centre hemodialysis care: a mixed methods study

We aimed to describe (1) depressive and anxiety symptom burdens reported by adults on in-centre hemodialysis in Northern Alberta, Canada and (2) patients’ and nurses’ perceptions of managing such symptoms usin...

Authors: Kara Schick-Makaroff, Lisa A. Wozniak, Hilary Short, Sara N. Davison, Scott Klarenbach, Robert Buzinski, Michael Walsh and Jeffrey A. Johnson

The burden of pharmacological treatment on health-related quality of life in people with a urea cycle disorder: a qualitative study

Urea cycle disorders (UCD) are inborn errors of metabolism, typically presenting neonatally. Excess ammonia builds rapidly within the body risking hyperammonemic episodes and potentially death. Long-term manag...

Authors: Gillian Yeowell, Danielle Stephanie Burns and Francis Fatoye

Evaluation of the content validity of patient-reported outcome (PRO) instruments developed for use with individuals with phakic presbyopia, including the Near Activity Visual Questionnaire-presbyopia (NAVQ-P) and the near vision correction independence (NVCI) instrument

Presbyopia is the age-related deterioration in the ability to focus on close objects. In order to develop a patient-reported outcome (PRO) instrument to assess near vision functioning, the Near Activity Visual...

Authors: Sarah Bentley, Amy Findley, Sima Chiva-Razavi, Christel Naujoks, Francesco Patalano, Chloe Johnson, Rob Arbuckle and James S. Wolffsohn

Psychometric properties of the Persian version of the quality of recovery-15 questionnaire

Recovery after surgery is a complex process since it depends on many factors, such as the patient’s sex, age, surgery type, and presence of other diseases. This study aimed to translate and evaluate the psycho...

Authors: Hooman Shahsavari, Golnar Ghane, Shahrzad Ghiyasvandian, Masoumeh Zakerimoghadam and Fatemeh Najafi

Patient-reported outcome measures for clinical decision-making in outpatient follow-up: validity and reliability of a renal disease questionnaire

Patient-reported outcome measures are increasingly used by clinicians to support communication in telephone- or face-to-face consultations with patients. A renal disease questionnaire has been developed, but n...

Authors: Birgith Engelst Grove, Liv Marit Valen Schougaard, Per Ramløv Ivarsen, Derek Kyte, Niels Henrik Hjollund and Annette de Thurah

Preferences on how to measure and discuss health related quality of life within integrated care for children with obesity

Childhood obesity can affect physical as well as psychosocial wellbeing. Therefore, childhood obesity care aims to improve all dimensions of health related quality of life (HRQoL). HRQoL can be measured with t...

Authors: Minke M. A. Eilander, Marieke M. A. van Mil, Leandra W. Koetsier, Jacob C. Seidell and Jutka Halberstadt

Psychometrics of three Swedish physical pediatric item banks from the Patient-Reported Outcomes Measurement Information System (PROMIS)®: pain interference, fatigue, and physical activity

The Patient-Reported Outcomes Measurement Information System (PROMIS®) aims to provide self-reported item banks for several dimensions of physical, mental and social health. Here we investigate the psychometri...

Authors: Frida Carlberg Rindestig, Marie Wiberg, John Eric Chaplin, Eva Henje and Inga Dennhag

Implementation of EQ-5D-5L as a routine outcome measure in Community Outpatient and Specialized Rehabilitation Services

Rehabilitation is a person-centred approach that optimizes functioning to reduce impairments in individuals with illness, injury or disability. Patient-reported outcome measures (PROMs) have a role in rehabili...

Authors: Katie Churchill, Lisa Warner, Eileen Keogh and Fatima Al Sayah

Selection of patient-reported outcome measures (PROMs) for use in health systems

Many healthcare systems around the world have been increasingly using patient-reported outcome measures (PROMs) in routine outcome measurement to enhance patient-centered care and incorporate the patient’s per...

Authors: Fatima Al Sayah, Xuejing Jin and Jeffrey A. Johnson

A multi-level approach for the use of routinely collected patient-reported outcome measures (PROMs) data in healthcare systems

Authors: Fatima Al Sayah, Markus Lahtinen, Gouke J. Bonsel, Arto Ohinmaa and Jeffrey A. Johnson

Utilizing Patient Reported Outcome Measures (PROMs) in ambulatory oncology in Alberta: Digital reporting at the micro, meso and macro level

Cancer patients experience numerous distressing symptoms and concerns across the course of their illness, which negatively influence their quality of life. Regardless of cancer type, unmanaged symptoms can lea...

Authors: Linda Watson, Andrea Delure, Siwei Qi, Claire Link, Lindsi Chmielewski, Éclair Photitai and Louise Smith

Advancing PROMs for health system use in Canada and beyond

PROMs are essential to delivering patient-centred health care, and when applied routinely they can enhance communication between patients and providers, inform decisions for value-based health system improveme...

Authors: Michael Terner, Krista Louie, Candy Chow and Greg Webster

Patient-reported outcome measures in the care of in-centre hemodialysis patients

Kidney failure requiring dialysis is associated with high symptom burden and low health-related quality of life (HRQL). Patient-reported outcome measures (PROMs) are standardized instruments that capture patie...

Authors: Sara N. Davison, Scott Klarenbach, Braden Manns, Kara Schnick-Makaroff, Robert Buzinski, Bonnie Corradetti, Hilary Short and Jeffrey A. Johnson

Measuring value in healthcare from a patients’ perspective

Authors: Stafford Dean, Fatima Al Sayah and Jeffrey A. Johnson

The use of patient-reported outcome measures in hip and knee arthroplasty in Alberta

PROMs are part of routine measurement for hip and knee replacement in Alberta, Canada. We provide an overview of how PROMs are implemented in routine care, and how we use PROMs data for decision-making at diff...

Authors: Deborah A. Marshall, Xuejing Jin, Lindsay B. Pittman and Christopher J. Smith

The use of patient-reported outcome measures in primary care: applications, benefits and challenges

PROMs use in primary care has expanded from simply describing patient populations to contributing to decision-making, in response to the increasingly complex, ever-changing healthcare environment. In Alberta, ...

Authors: Krista Brower, Margo Schmitt-Boshnick, Michel Haener, Shea Wilks and Allison Soprovich

The use of patient-reported measures in epilepsy care: the Calgary Comprehensive Epilepsy Program experience

The regular use of patient-reported measures (PRMs) has been associated with greater patient satisfaction and outcomes. In this article, we will review the Calgary Comprehensive Epilepsy Program's successful e...

Authors: Guillermo Delgado-García, Samuel Wiebe and Colin B. Josephson

Measuring respiratory symptoms in moderate/severe asthma: evaluation of a respiratory symptom tool, the E-RS®: COPD in asthma populations

Symptom constructs included in the Evaluating Respiratory Symptoms in Chronic Obstructive Pulmonary Disease (E-RS®: COPD) tool may be relevant to patients with asthma. The purpose of this study was to evaluate...

Authors: Maggie Tabberer, Robyn von Maltzahn, Elizabeth D. Bacci, Hayley Karn, Ray Hsieh, Timothy A. Howell, Zelie Bailes, Andrew Fowler, Laurie Lee and Lindsey T. Murray

PROMIS® Health Organization (PHO) 2021 Conference Abstracts

Authors:

A novel patient-reported outcome instrument assessing the symptoms of paroxysmal nocturnal hemoglobinuria, the PNH-SQ

Patient-reported outcome measures (PROs) used to measure symptoms of patients with paroxysmal nocturnal hemoglobinuria (PNH) in trials do not measure PNH symptoms comprehensively and do not assess daily fluctu...

Authors: R. Paola Daly, Jessica J. Jalbert, Shannon Keith, Tara Symonds and Jamile Shammo

Measurement properties of brief neuropathy screening items in cancer patients receiving taxanes, platinums, or proteasome inhibitors

Timely detection of chemotherapy-induced peripheral neuropathy (CIPN) is critical to effectively tailor chemotherapy dose levels and offer supportive care. The purpose of this secondary analysis was to determi...

Authors: Robert Knoerl, Emanuele Mazzola, Sandra A. Mitchell, Fangxin Hong, Elahe Salehi, Nadine McCleary, Jennifer A. Ligibel, Kaitlen Reyes and Donna L. Berry

Psychometric validation of the Female Sexual Distress Scale-Desire/Arousal/Orgasm

For the treatment of female sexual dysfunction, the most relevant outcome measures are patient-reported treatment effects and changes in symptoms, underscoring the need for reliable, validated patient-reported...

Authors: Leonard R. Derogatis, Dennis A. Revicki, Raymond C. Rosen, Robert Jordan, Johna Lucas and Carl Spana

Validation and reliability of the Dutch version of the EORTC QLQ-NMIBC24 Questionnaire Module for patients with non-muscle-invasive bladder cancer

The European Organisation for Research and Treatment of Cancer (EORTC) quality of life questionnaire for non-muscle invasive bladder cancer (QLQ-NMIBC24) has been available and applied for some years now, but ...

Authors: Theodora M. Ripping, Ellen Westhoff, Neil K. Aaronson, Mieke Van Hemelrijck, Elke Rammant, J. Alfred Witjes, Lambertus. A. Kiemeney, Katja K. H. Aben and Alina Vrieling

Score equivalence of paper-, tablet-, and interactive voice response system-based versions of PROMIS, PRO-CTCAE, and numerical rating scales among cancer patients

The study tests the effects of data collection modes on patient responses associated with the multi-item measures such as Patient-Reported Outcomes Measurement System (PROMIS^®), and single-item measures such as P...

Authors: Minji K. Lee, Timothy J. Beebe, Kathleen J. Yost, David T. Eton, Paul J. Novotny, Amylou C. Dueck, Marlene Frost and Jeff A. Sloan

Patient perspectives on digital patient reported outcomes in routine care of inflammatory bowel disease

Digital patient reported outcomes are used increasingly in daily care and treatment of inflammatory bowel disease. Their purpose includes increased focus on patient wellbeing, reduction in avoidable follow-up ...

Authors: Amalie Søgaard Nielsen, Charlotte W. Appel, Birgit Furstrand Larsen, Lars Kayser and Lisa Hanna

Implementation of a cloud-based electronic patient-reported outcome (ePRO) platform in patients with advanced cancer

Patient reported outcomes (PROs) have been associated with improved symptom management and quality of life in patients with cancer. However, the implementation of PROs in an academic clinical practice has not ...

Authors: Olga Generalova, Mohana Roy, Evan Hall, Sumit A. Shah, Kristen Cunanan, Touran Fardeen, Brianna Velazquez, Gilbert Chu, Bianca Bruzzone, Anna Cabot, George A. Fisher, Sandy Srinivas, Alice C. Fan, Sigurdis Haraldsdottir, Heather A. Wakelee, Joel W. Neal…

Patient understanding and experience of non-invasive imaging diagnostic techniques and the liver patient pathway

Clinical and patient-reported outcomes are positively affected when efforts to increase patient understanding of underlying diseases and foster patient participation are part of care pathways. The prevalence o...

Authors: Andy McKay, Carlos Pantoja, Richard Hall, Sarah Matthews, Phil Spalding and Rajarshi Banerjee

The Norwegian PROMIS-29: psychometric validation in the general population for Norway

The Patient Reported Outcome Measurement Information System profile instruments include “high information” items drawn from large item banks following the application of modern psychometric criteria. The short...

Authors: Andrew M. Garratt, Joël Coste, Alexandra Rouquette and José M. Valderas

Only two subscales of the Coping Strategies Questionnaire are culturally relevant for people with chronic low back pain in Nigerian Igbo populations: a cross-cultural adaptation and validation study

Pain coping strategies are important in the chronicity of low back pain and the associated disability. However, their exact influence is unknown in many African contexts such as rural Nigeria due to lack of ou...

Authors: Chinonso Nwamaka Igwesi-Chidobe, Isaac Olubunmi Sorinola and Emma Louise Godfrey

Patients’ satisfaction with long-acting injectable somatostatin analog therapy for neuroendocrine tumors

Long-acting somatostatin analogs (LA SSAs) are approved and recommended for the treatment of patients with advanced neuroendocrine tumors (NETs). Given the long duration of therapy and differences in administr...

Authors: Christina Darden, Mark Price, David Ray, Grace Goldstein, Diana Goss, Lee Bennett, Diana Garbinsky and Ramya Thota

Use of the PROMIS-10 global health in patients with chronic low back pain in outpatient physical therapy: a retrospective cohort study

Although evidence-based guidelines for physical therapy for patients with chronic low back pain (cLBP) are available, selecting patient-reported outcome measures to capture complexity of health status and qual...

Authors: Sang S. Pak, Matthew J. Miller and Victor A. Cheuy

Swedish translation and cross-cultural adaptation of eight pediatric item banks from the Patient-Reported Outcomes Measurement Information System (PROMIS)^®

This study is part of the Swedish initiative for the establishment of standardized, modern patient-reported measures for national use in Swedish healthcare. The goal was to translate and culturally adapt eight...

Authors: Ida Blomqvist, John Eric Chaplin, Evalill Nilsson, Eva Henje and Inga Dennhag

Translation and validation of the Urdu version of the European organization for research and treatment of cancer core quality of life questionnaire (EORTC QLQ-C30) and brain module (QLQ-BN20) in primary brain tumor patients

This study translated and validated the Urdu version of the European Organization for Research and Treatment of Cancer Quality of Life (QoL) Questionnaire (EORTC QLQ-C30) and Brain Module (QLQ-BN20) amongst pa...

Authors: Nida Zahid, Russell Seth Martins, Wajeeha Zahid, Wardah Khalid, Iqbal Azam, Shireen Shehzad Bhamani, Nargis Asad, Khabir Ahmad, Adnan Abdul Jabbar, Muhammad Shahzad Shamim, Rashid Jooma Khan, Gohar Javed, Ehsan Bari and Syed Ather Enam

Feasibility of assessing utilities with a single-item standard gamble questionnaire in patients with melanoma

To determine the feasibility of eliciting utilities with a standard gamble self-completion questionnaire that uses a single-item approach in melanoma patients.

Authors: Christine Blome, Katharina C. Kähler, Tobias Wagner, Axel Hauschild and Matthias Augustin

Translation and cross-cultural adaptation of a Nepali version of the Dutch Participation and Activity Inventory for Children and Youth (PAI - CY) with visual impairment

Visual impairment is an important cause of disability in children. There is a lack of information on rehabilitation needs and low vision support services for children with visual impairment in Nepal. This is a...

Authors: Srijana Adhikari, Ellen Bernadette Maria Elsman, Ruth Marie Antoinette van Nispen, Fleur van Rens, Radhika Upreti Oli, Suman S. Thapa and Gerardus Hermanus Maria Bartholomeus van Rens