Articles

PROMIS® Health Organization (PHO) 2021 Conference Abstracts

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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

A comparison of oncologist versus mental health provider attitudes towards standardized and tailored patient-reported outcomes

Patient-reported outcomes (PROs) can be used to monitor patients during treatment. Healthcare provider preferences for individualized vs. standardized PROs have been understudied.

Authors: Salene M. W. Jones, Aliana Gaffney and Joseph M. Unger

Symptoms and impacts of ambulatory nonsense mutation Duchenne muscular dystrophy: a qualitative study and the development of a patient-centred conceptual model

Duchenne muscular dystrophy is a rare genetic neuromuscular disorder, which can result in early death due to disease progression. Ataluren is indicated for the treatment of nonsense mutation Duchenne muscular ...

Authors: Kate Williams, Ian Davidson, Mark Rance, Axel Boehnke, Katharina Buesch and Sarah Acaster

Correction to: Patient-led use of patient-reported outcome measure in self-Management of a Rotator Cuff Injury

Authors: Maria J. Santana and Darrell J. Tomkins

Correction to: Validation of a novel patient reported tool to assess the impact of treatment in erythropoietic protoporphyria: the EPP-QoL

Authors: G. Biolcati, S. Hanneken, E. I. Minder, N. J. Neumann, J. H. P. Wilson, P. J. Wolgen, D. J. Wright and A. J. Lloyd

Development of a novel PRO instrument for use in familial chylomicronemia syndrome

Familial chylomicronemia syndrome (FCS), a rare genetic disorder characterized by high levels of circulating triglycerides, negatively impacts multiple organs, including the liver and pancreas.

Authors: David Davidson, Christina Slota, Montserrat Vera-Llonch, T. Michelle Brown, Andrew Hsieh and Sheri Fehnel

A qualitative study on the impact of caring for an ambulatory individual with nonsense mutation Duchenne muscular dystrophy

Duchenne muscular dystrophy is a rare genetic neuromuscular disorder, which can result in early death due to disease progression. Ataluren is indicated for the treatment of nonsense mutation Duchenne muscular ...

Authors: Kate Williams, Ian Davidson, Mark Rance, Katharina Buesch and Sarah Acaster

Psychometric validation of the Hypoparathyroidism Patient Experience Scales (HPES)

Hypoparathyroidism (HP) is a rare endocrine disorder characterized by absent or inappropriately low levels of circulating parathyroid hormone with associated significant physical and cognitive symptoms. This s...

Authors: Meryl Brod, Lori McLeod, Denka Markova, Jill Gianettoni, Sanchita Mourya, Zhengning Lin, Aimee Shu and Alden Smith

Development and validation of the Methotrexate Experience Questionnaire, a new methotrexate oral treatment adherence tool in rheumatoid arthritis

Despite the development of new biologic therapies, methotrexate (MTX) remains the preferred initial disease-modifying anti-rheumatic drug to treat rheumatoid arthritis (RA). Adherence to disease-modifying anti...

Authors: Jeffrey R. Curtis, Jan Michael Nebesky, Elodie de Bock, Christine de la Loge, Benoit Arnould, Robert Davey, Jenny Devenport and Attila Pethö-Schramm

Measuring post-discharge socioeconomic and quality of life outcomes in trauma patients: a scoping review

Trauma is a global public health challenge. Measuring post-discharge socioeconomic and quality-of-life outcomes can help better understand and reduce the consequences of trauma.

Authors: Siddarth Daniels David, Nobhojit Roy, Harris Solomon, Cecilia Stålsby Lundborg and Martin Gerdin Wärnberg

Responsiveness of Nepali version of Oswestry Disability Index (ODI) on individuals with non-specific low back pain

Low back pain (LBP) is a common musculoskeletal problem, associated with disability and high societal costs. The Oswestry Disability Index (ODI) is among the most commonly used patient reported outcome measure...

Authors: Kandel Binaya, Thapa Kajal, Acharya S. Ranjeeta and Nepal Govinda

The Swedish RAND-36: psychometric characteristics and reference data from the Mid-Swed Health Survey

This study aims to evaluate data quality, scaling properties, and reliability of the Swedish RAND-36 in a general population sample and to present reference data for the Swedish population.

Authors: Emma Ohlsson-Nevo, Ayako Hiyoshi, Paulina Norén, Margareta Möller and Jan Karlsson

Validation of a novel patient reported tool to assess the impact of treatment in erythropoietic protoporphyria: the EPP-QoL

A novel treatment has been developed for erythropoietic protoporphyria (EPP) (a rare condition that leaves patients highly sensitive to light). To fully understand the burden of EPP and the benefit of treatmen...

Authors: G. Biolcati, S. Hanneken, E. I. Minder, N. J. Neumann, J. H. P. Wilson, P. J. Wolgen, D. J. Wright and A. J. Lloyd

Validity arguments for patient-reported outcomes: justifying the intended interpretation and use of data

Contrary to common usage in the health sciences, the term “valid” refers not to the properties of a measurement instrument but to the extent to which data-derived inferences are appropriate, meaningful, and us...

Authors: Melanie Hawkins, Gerald R. Elsworth, Sandra Nolte and Richard H. Osborne

Content validation of a self-report daily diary in patients with sickle cell disease

Sickle Cell Disease (SCD) is a genetic progressive vascular disease that impacts patients overall health and quality of life. Sickle-cell pain crises (SCPCs) are a hallmark clinical presentation of SCD and hav...

Authors: Michelle K. White, Cory Saucier, Miranda Bailey, Denise D’Alessio, April Foster, Danielle St. Pierre and Kimberly Raymond

Correction to: Development of patient-reported outcomes item set to evaluate acute treatment toxicity to pelvic online magnetic resonance-guided radiotherapy

Authors: P. K. Møller, H. Pappot, U. Bernchou, T. Schytte and K. B. Dieperink

Measuring health-related quality of life in patients with rare disease

There has been a growing emphasis on health-related quality of life (HRQoL) as an important outcome in rare disease drug development, although its assessment may be useful outside the drug development context,...

Authors: William R. Lenderking, Milena Anatchkova, Robin Pokrzywinski, Anne Skalicky, Mona L. Martin and Heather Gelhorn

Measuring patient-reported physical functioning and fatigue in myelodysplastic syndromes using a modular approach based on EORTC QLQ-C30

Physical functioning and fatigue are key patient concerns in myelodysplastic syndromes (MDS), chronic myelomonocytic leukemia (CMML), and acute myeloid leukemia (AML). The objective of this research was to gen...

Authors: Antoine Regnault, Farrah Pompilus, Anna Ciesluk, Flora Mazerolle, Rafael Bejar, Robert J. Fram, Douglas V. Faller, Patrick Marquis and Jill A. Bell

Linking scores on the 4- and 5-item versions of the Satisfaction with Life Scale in people with traumatic brain, spinal cord, or burn injury: a National Institute on Disability, Independent Living, and Rehabilitation Research Model System study

The Satisfaction with Life Scale (SWLS) is a widely used measure of subjective well-being. Recent evidence indicates the fifth item of the scale reduces the reliability of the scale and is inappropriate for us...

Authors: Alyssa M. Bamer, Kara McMullen, Anne Deutsch, Mitch Sevigny, Tracy Mroz, Shelly A. Wiechman, Jeffrey C. Schneider and Dagmar Amtmann

Quality of life assessments in clinical practice using either the EORTC-QLQ-C30 or the SEIOQL-DW: a randomized study

Effective patient-physician communication can improve patient understanding, agreement on treatment and adherence. This may, in turn, impact on clinical outcomes and patient quality of life (QoL). One way to i...

Authors: Åsa Kettis, Hanna Fagerlind, Jan-Erik Frödin, Bengt Glimelius and Lena Ring

Creating idiometric short-form measures of cognitive appraisal: balancing theory and pragmatics

The Rapkin and Schwartz appraisal theory and measure provided a path toward documenting response-shift effects and describing individual differences in ways of thinking about quality of life (QOL) that disting...

Authors: Carolyn E. Schwartz, Roland B. Stark and Bruce D. Rapkin

Development of a short form of the Singapore Caregiver Quality of Life Scale – Dementia: SCQOLS-D-15

The Singapore Caregiver Quality of Life Scale – Dementia (SCQOLS-D), developed based on the Singapore Caregiver Quality of Life Scale (SCQOLS), comprises 5 domains and 63 items. It has been shown to be a valid...

Authors: Chun Fan Lee, Dennis C. C. Seow, Irene Teo, Shirlyn H. S. Neo, Grace M. Yang, Geok Ling Lee, Wee Shiong Lim, Allyn Hum and Yin Bun Cheung

From statistics to clinics: the visual feedback of PROMIS® CATs

To reduce the burden of completing Patient-Reported Outcome Measures (PROMs), PROMIS® Computerized Adaptive Tests (CATs) are being implemented in pediatric clinical practice. We aimed to develop recommendation...

Authors: Maud M. van Muilekom, Michiel A. J. Luijten, Hedy A. van Oers, Caroline B. Terwee, Raphaële R. L. van Litsenburg, Leo D. Roorda, Martha A. Grootenhuis and Lotte Haverman

Psychometric properties of the thyroid-specific quality of life questionnaire ThyPRO in Singaporean patients with Graves’ disease

Graves’ disease is the most common cause of hyperthyroidism. It results in accelerated tissue metabolism with multi-organ involvement ranging from cardiovascular to neuropsychological function. This results in...

Authors: Huiling Liew, Torquil Watt, Luo Nan, Alvin W. K. Tan, Yiong Huak Chan, Daniel Ek Kwang Chew and Rinkoo Dalan

Patient-proxy agreement on change in acute stroke patient-reported outcome measures: a prospective study

Research has indicated proxies overestimate symptoms on patients’ behalves, however it is unclear whether patients and proxies agree on meaningful change across domains over time. The objective of this study i...

Authors: Brittany R. Lapin, Nicolas R. Thompson, Andrew Schuster and Irene L. Katzan

Qualitative and psychometric approaches to evaluate the PROMIS pain interference and sleep disturbance item banks for use in patients with rheumatoid arthritis

Patients with rheumatoid arthritis (RA) commonly experience pain despite the availability of disease-modifying treatments. Sleep disturbances are frequently reported in RA, with pain often a contributing facto...

Authors: Brandon Becker, Kimberly Raymond, Carol Hawkes, April Mitchell Foster, Andrew Lovley, Cory Saucier, Avery A. Rizio, Jakob Bue Bjorner and Mark Kosinski

Symptoms, impacts, and suitability of the Pulmonary Arterial Hypertension – Symptoms and Impact (PAH-SYMPACT™) questionnaire in patients with chronic thromboembolic pulmonary hypertension (CTEPH): a qualitative interview study

Chronic thromboembolic pulmonary hypertension (CTEPH) is a rare form of pulmonary hypertension caused by blood clots and scar tissue in the blood vessels of the lungs. Health-related quality of life is often s...

Authors: Brooke Currie, Evan Davies, Amélie Beaudet, Larissa Stassek and Leah Kleinman

The value of the patient global health assessment in polyarticular juvenile idiopathic arthritis: a nested cohort study

The objectives were: 1) to explore the discordance between the Patient Global Health Assessment (PtGA) scores, the Physician Global Health Assessment (PhGA) scores, and Pain scores; and 2) to explore whether t...

Authors: Rebecca Trachtman, Rula Issa, Stephanie Pan, Karen M. Wilson, Daniel J. Lovell and Karen B. Onel

A qualitative study to explore symptoms and impacts of pediatric and adolescent Crohn’s disease from patient and caregiver perspective

Crohn’s disease (CD) is a chronic inflammatory condition of the gastrointestinal tract that affects people across the age spectrum but often starts in childhood or early adulthood. Despite this, almost all pub...

Authors: Louise Newton, Laure Delbecque, Ufuk Coşkun, Tara Symonds, Jennifer Clegg and Theresa Hunter

Crohn’s disease and ulcerative colitis patient-reported outcomes signs and symptoms for the remote management of inflammatory bowel disease during the COVID-19 pandemic

The COVID-19 pandemic has led to a deep reorganization of hospital services including inflammatory bowel disease (IBD) units. In this situation, conversion of in-person routine follow-up visits into phone cons...

Authors: Sergio Pinto, Erica Loddo, Salvatore Paba, Agnese Favale, Fabio Chicco, Sara Onali, Paolo Usai and Massimo Claudio Fantini

Development of patient-reported outcomes item set to evaluate acute treatment toxicity to pelvic online magnetic resonance-guided radiotherapy

A new technology in cancer treatment, the MR-linac, provides online magnetic resonance-guided radiotherapy (MRgRT) that combines real-time visualization of the tumor and surrounding tissue with radiation thera...

Authors: P. K. Møller, H. Pappot, U. Bernchou, T. Schytte and K. B. Dieperink

Engaging multi-stakeholder perspectives to identify dementia care research priorities

The purpose of this study was to partner with stakeholders to identify gaps in care for persons living with dementia and their family caregivers and from this list, identify priorities for dementia care research.

Authors: Neela K. Patel, Sara S. Masoud, Kylie Meyer, Angelica V. Davila, Sheran Rivette, Ashlie A. Glassner, Deborah James and Carole L. White

Concept confirmation of the Treatment Administration Satisfaction Questionnaire (TASQ) in rare paroxysmal nocturnal hemoglobinuria

This study was conducted to evaluate content validity of the IntraVenous and SubCutaneous Treatment Administration Satisfaction Questionnaires (TASQ-IV and TASQ-SC), for use in a clinical trial population of p...

Authors: Helen Doll, Ufuk Coşkun, Chris Hartford and Ioannis Tomazos

Patient-reported anxiety and depression measures for use in Indian head and neck cancer populations: a psychometric evaluation

Head and neck cancers (HNC) are one of the most traumatic forms of cancer because they affect essential aspects of life such as speech, swallowing, eating and disfigurement. HNCs are common in India, with over...

Authors: Chindhu Shunmugasundaram, Haryana M. Dhillon, Phyllis N. Butow, Puma Sundaresan, Mahati Chittem, Niveditha Akula, Surendran Veeraiah and Claudia Rutherford