Articles

Developing and pretesting a new patient reported outcome measure for paediatric Chronic Fatigue Syndrome/ Myalgic Encephalopathy (CFS/ME): cognitive interviews with children

There is a lack of patient derived, child specific outcome measures to capture what health outcomes are important to children with Chronic Fatigue Syndrome/ Myalgic Encephalopathy (CFS/ME). We developed a new ...

Authors: Roxanne M. Parslow, Alison Shaw, Kirstie L. Haywood and Esther Crawley

A qualitative study exploring the health-related quality of life and symptomatic experiences of adults and adolescents with ulcerative colitis

Ulcerative colitis (UC) often first presents during adolescence and early adulthood. Primary symptoms of UC are well known, yet similarities and differences of disease experience in adults and adolescents are ...

Authors: Louise Newton, Jason A. Randall, Theresa Hunter, Shannon Keith, Tara Symonds, Roberta J. Secrest, Wendy J. Komocsar, Sarah E. Curtis, Linda Abetz-Webb, Michael Kappelman and April N. Naegeli

Responsiveness of PROMIS® to change in chronic obstructive pulmonary disease

Chronic obstructive pulmonary disease (COPD) is a progressive chronic disease characterized by airflow obstruction that leads to shortness of breath and substantial negative impacts on health-related quality o...

Authors: Susan E. Yount, Charles Atwood, James Donohue, Ron D. Hays, Debra Irwin, Nancy Kline Leidy, Honghu Liu, Karen L. Spritzer and Darren A. DeWalt

Evaluation of meaningful change in bowel movement frequency for patients with carcinoid syndrome

Carcinoid syndrome is associated with a reduced quality of life that can be attributed to symptoms such as diarrhea and fatigue as well as social and financial issues. This study was conducted to psychometrica...

Authors: Stacie Hudgens, John Ramage, Matthew Kulke, Emily Bergsland, Lowell Anthony, Martyn Caplin, Kjell Öberg, Marianne Pavel, Jonathon Gable, Phillip Banks, Qi Melissa Yang and Pablo Lapuerta

Establishing the acceptability of a brief patient reported outcome measure and feasibility of implementing it in a breast device registry – a qualitative study

To examine the acceptability of a Patient Reported Outcome Measure (PROM) that assesses perceptions and experiences of implants for breast reconstruction or augmentation, and the feasibility of implementing it...

Authors: Sze Ng, Maggie Kirkman, Jane Fisher, Andrea Pusic, Emily Parker, Rodney D. Cooter, Elisabeth Elder, Colin Moore, John McNeil and Ingrid Hopper

Translation and validation of two disease-specific patient-reported outcome measures (Bladder Cancer Index and FACT-Bl-Cys) in Dutch bladder cancer patients

The Bladder Cancer Index (BCI) and Functional Assessment of Cancer Therapy-Bladder-Cystectomy (FACT-Bl-Cys) were developed to measure disease-specific health-related quality of life (HRQOL) in bladder cancer p...

Authors: Charlotte T. J. Michels, Carl J. Wijburg, Inger L. Abma, J. Alfred Witjes, Janneke P. C. Grutters and Maroeska M. Rovers

Patient-initiated versus fixed-interval patient-reported outcome-based follow-up in outpatients with epilepsy: a pragmatic randomized controlled trial

The use of patient-reported outcome (PRO) could potentially contribute to the reorganization of the health care system. AmbuFlex is a PRO system used in remote patient monitoring, in which questionnaires are s...

Authors: Liv Marit Valen Schougaard, Caroline Trillingsgaard Mejdahl, Jakob Christensen, Kirsten Lomborg, Helle Terkildsen Maindal, Annette de Thurah and Niels Henrik Hjollund

Adaptation and validation of the memorial anxiety scale for prostate cancer (MAX-PC) in a sample of French men

The Memorial Anxiety Scale for Prostate Cancer (MAX-PC, 18 items) was developed to assess anxiety in prostate cancer patients. In the absence of a French version of this scale, we adapted the original English ...

Authors: Rajae Touzani, Julien Mancini, Jaïs Troïan, Anne-Déborah Bouhnik, Olivier Cussenot, Gwenaelle Gravis and Patricia Marino

Development and validation of the Axillary Sweating Daily Diary: a patient-reported outcome measure to assess axillary sweating severity

Hyperhidrosis is estimated to affect ~ 4.8% of the US population, and most patients experience a negative psychological impact. Here, we describe development and psychometric evaluation of a patient-reported o...

Authors: L. M. Nelson, D. DiBenedetti, D. M. Pariser, D. A. Glaser, A. A. Hebert, H. Hofland, J. Drew, D. Ingolia, K. K. Gillard and S. Fehnel

Identifying symptom recurrences in primary brain tumor patients using the MDASI-BT and qualitative interviews

Identifying symptoms experienced throughout the disease trajectory is pivotal to understanding management of patient symptoms. Patient interviews to solicit input from those who have experienced these symptoms...

Authors: Alvina A. Acquaye, Samuel S. Payén, Elizabeth Vera, Loretta A. Williams, Mark R. Gilbert, Shiao-Pei Weathers and Terri S. Armstrong

Psychometric validation of the 1-month recall Uterine Fibroid Symptom and Health-Related Quality of Life questionnaire (UFS-QOL)

To evaluate the psychometric characteristics of the 1-month recall Uterine Fibroid Symptom and Health-Related Quality of Life questionnaire (UFS-QOL), including the Revised Activities subscale.

Authors: Karin S. Coyne, Amanda Harrington, Brooke M. Currie, Jun Chen, Patrick Gillard and James B. Spies

Patient-reported outcomes item selection for bladder cancer patients in chemo- or immunotherapy

Selection of specific patient-reported outcomes (PROs) for cancer patients requires careful consideration to the purpose and population at aim. Here we report the process of choosing which items to include in ...

Authors: Gry Assam Taarnhøj, Henriette Lindberg, Christoffer Johansen and Helle Pappot

Perception of illness among patients with heart failure is related to their general health independently of their mood and functional capacity

To explore the relationship between illness perceptions and self-reported general health of patients with chronic heart disease, using some core elements from the Common Sense Model.

Authors: Anners Lerdal, Dag Hofoss, Caryl L. Gay and May Solveig Fagermoen

Patient experience and challenges in group concept mapping for clinical research

Group concept mapping (GCM) is a research method that engages stakeholders in generating, structuring and representing ideas around a specific topic or question. GCM has been used with patients to answer quest...

Authors: Geoffrey D. Mills, Marianna LaNoue, Alexzandra T. Gentsch, Amanda M. B. Doty, Amy Cunningham, Garrison Nord and Kristin L. Rising

Feasibility and perception of a question prompt list in outpatient cancer care

Management of cancer is often characterized by difficult decisions. The National Coalition for Cancer Survivorship (NCCS) has developed the “Know Yourself” tool, a question prompt list (QPL) to enable patients...

Authors: Zackary Berger, Monica Tung, Pooja Yesantharao, Alice Zhou, Amanda Blackford, Thomas J. Smith and Claire Snyder

Shared decision making and the practice of community translation in presenting a pre-final Afrikaans for the Western Cape Disabilities of the Arm, Shoulder and Hand (DASH) questionnaire: a proposal for improved translation and cross-cultural adaptation

Translation and cross cultural adaptation of patient reported outcome measures (PROMs) involves a step referred to as harmonisation, following forward and backward translation of the measure. This article prop...

Authors: Susan de Klerk, Christina Jerosch-Herold, Helen Buchanan and Lana van Niekerk

State of the psychometric methods: patient-reported outcome measure development and refinement using item response theory

This paper is part of a series comparing different psychometric approaches to evaluate patient-reported outcome (PRO) measures using the same items and dataset. We provide an overview and example application t...

Authors: Angela M. Stover, Lori D. McLeod, Michelle M. Langer, Wen-Hung Chen and Bryce B. Reeve

State of the psychometric methods: comments on the ISOQOL SIG psychometric papers

Psychometric analyses of patient reported outcomes typically use either classical test theory (CTT), item response theory (IRT), or Rasch measurement theory (RTM). The three papers from the ISOQOL Psychometric...

Authors: Jakob B. Bjorner

Many ways to skin a cat: psychometric methods options illustrated

The three articles in this issue from members of the Psychometric Special Interest Group (SIG) of the International Society for Quality of Life Research (ISOQOL) examine three different psychometric techniques...

Authors: Donald L. Patrick

Psychometric performance of the PROMIS® depression item bank: a comparison of the 28- and 51-item versions using Rasch measurement theory

The aim of this study is to illustrate an example application of Rach Measurement Theory (RMT) in the evaluation of patient-reported outcome (PRO) measures. RMT diagnostic methods were applied to evaluate the ...

Authors: Sophie Cleanthous, Skye Pamela Barbic, Sarah Smith and Antoine Regnault

Psychometric evaluation of the PROMIS® Depression Item Bank: an illustration of classical test theory methods

Psychometric theory offers a range of tests that can be used as supportive evidence of both validity and reliability of instruments aimed at measuring patient-reported outcomes (PRO). The aim of this paper is ...

Authors: Sandra Nolte, Cheryl Coon, Stacie Hudgens and Mathilde G. E. Verdam

Use of a choice survey to identify adult, adolescent and parent preferences for vaccination in the United States

Adult and adolescent vaccination rates are far below coverage targets in the United States. Our objective was to identify the most influential factors related to vaccine uptake among adults, adolescents, and p...

Authors: Tara A. Lavelle, Mark Messonnier, Shannon Stokley, David Kim, Aparna Ramakrishnan, Achamyeleh Gebremariam, Norma-Jean E. Simon, Angela M. Rose and Lisa A. Prosser

Moderate-vigorous physical activity and health-related quality of life among Hispanic/Latino adults in the Hispanic Community Health Study/Study of Latinos (HCHS/SOL)

Physical activity is a modifiable healthy behavior that has been shown to positively influence health-related quality of life. However, research examining the link between physical activity and health-related ...

Authors: Priscilla M. Vásquez, Ramon A. Durazo-Arvizu, David X. Marquez, Maria Argos, Melissa Lamar, Angela Odoms-Young, Donghong Wu, Hector M. González, Wassim Tarraf, Daniela Sotres-Alvarez, Denise Vidot, Rosenda Murillo, Krista M. Perreira, Sheila F. Castañeda, Yasmin Mossavar-Rahmani, Jianwen Cai…

Assessing the impact on caregivers caring for patients with rare pediatric lysosomal storage diseases: development of the Caregiver Impact Questionnaire

Capturing the impact of caring for patients with debilitating rare disease is important for understanding disease burden. We aimed to develop and validate an instrument to measure the impact on caregivers of c...

Authors: Magdalena Harrington, Asha Hareendran, Anne Skalicky, Hilary Wilson, Marci Clark and Jaromir Mikl

Translation and cross-cultural adaptation of the Nepali version of the Rowland universal dementia assessment scale (RUDAS)

Mild Cognitive Impairment (MCI) is a transitional state between normal cognition and dementia during ageing process. Early screening of elderly for MCI can help for early prevention and treatment of dementia. ...

Authors: Govinda Mani Nepal, Asmita Shrestha and Ranjeeta Acharya

Patient factors affecting decision regret in the medical treatment process of gynecological diseases

To ensure that patients continue treatment, it is essential that the patient is satisfied with the decision-making process of the treatment. One way to address this is to assess the healthcare quality using th...

Authors: Kiyomi Tanno and Seiji Bito

Exploring content and psychometric validity of newly developed assessment tools for itch and skin pain in atopic dermatitis

Atopic dermatitis (AD) is a common skin disorder characterized by chronic inflammation, altered skin barrier function, and inflammatory cell skin infiltration that decreases health-related quality of life (HRQ...

Authors: Louise Newton, Amy M. DeLozier, Philip C. Griffiths, Jennifer N. Hill, Stacie Hudgens, Tara Symonds, Jonathon C. Gable, Jim Paik, Kathleen W. Wyrwich, Lawrence F. Eichenfield, Linda Abetz-Webb and Jonathan I. Silverberg

Patient reported outcomes can improve performance status assessment: a pilot study

Patient performance status is routinely used in oncology to estimate physical functioning, an important factor in clinical treatment decisions and eligibility for clinical trials. However, validity and reliabi...

Authors: Joan E. Broderick, Marcella May, Joseph E. Schwartz, Ming Li, Aaron Mejia, Luciano Nocera, Anand Kolatkar, Naoto T. Ueno, Sriram Yennu, Jerry S. H. Lee, Sean E. Hanlon, Frankie A. Cozzens Philips, Cyrus Shahabi, Peter Kuhn and Jorge Nieva

Cross-cultural adaptation and validation of the reintegration to normal living index into IGBO language among individuals with mobility disability

Community reintegration is one of the most important elements of disability rehabilitation globally. Hence, there is need for availability of psychometrically-sound and culturally-specific instruments for its ...

Authors: Emmanuel Chiebuka Okoye, Stella Onyinye Oyedum, Christopher Olusanjo Akosile, Ifeoma Uchenna Onwuakagba, Peter Olanrewaju Ibikunle, Uchenna Prosper Okonkwo and Ifeoma Adaigwe Okeke

Content validity of the Migraine-Specific Quality of Life Questionnaire version 2.1 electronic patient-reported outcome

A concept elicitation, cognitive debriefing, and usability study was undertaken to: 1) ascertain the migraine experience with a particular focus on the impact on roles and daily functioning; 2) determine the c...

Authors: Rebecca M. Speck, Huda Shalhoub, David W. Ayer, Janet H. Ford, Kathleen W. Wyrwich and Elizabeth N. Bush

A review of HIV-specific patient-reported measures of perceived barriers to antiretroviral therapy adherence: what themes are they covering?

Authors: Kim Engler, Isabelle Toupin, Serge Vicente, Sara Ahmed and Bertrand Lebouché

Translation and validation of the Korean version of PROMIS® pediatric and parent proxy measures for emotional distress

Authors: Heeseung Choi, Chanhee Kim, Heesung Ko and Chang Gi Park

A pragmatic patient-reported outcome strategy for rare disease clinical trials: application of the EORTC item library to myelodysplastic syndromes, chronic myelomonocytic leukemia, and acute myeloid leukemia

Novel, pragmatic, patient-centered strategies are needed to ensure fit-for-purpose patient-reported outcomes (PRO) instruments in clinical trial research for rare diseases such as myelodysplastic syndromes (MD...

Authors: Jill A. Bell, Aaron Galaznik, Farrah Pompilus, Sara Strzok, Rafael Bejar, Fatima Scipione, Robert J. Fram, Douglas V. Faller, Stefan Cano and Patrick Marquis

Evaluation of the psychometric properties and minimally important difference of the MD Anderson Symptom Inventory for malignant pleural mesothelioma (MDASI-MPM)

Symptom assessment requires psychometrically validated questionnaires that are easy to use, relevant to the disease, and quick to administer. The MD Anderson Symptom Inventory for malignant pleural mesotheliom...

Authors: Tito R. Mendoza, Loretta A. Williams, Karen N. Keating, Jonathan Siegel, Cem Elbi, Anna K. Nowak, Raffit Hassan, Brian Cuffel and Charles S. Cleeland

Maternal confidence after birth in at-risk and not-at-risk mothers: internal and external validity of the Danish version of the Karitane Parenting Confidence Scale (KPCS)

Parenting confidence is a key factor in predicting a range of outcomes for both parents and children, such as parental depression, parental stress, and child health development. This study examines maternal co...

Authors: Maiken Pontoppidan, Stefan Bastholm Andrade, Ingeborg Hedegaard Kristensen and Erik Lykke Mortensen

Response rate and costs for automated patient-reported outcomes collection alone compared to combined automated and manual collection

The response rate on patient-reported outcome measurements (PROMs) necessary to adequately evaluate a treatment and improve patient care is unknown. Hospitals generally aim for the highest possible response ra...

Authors: Yvette Pronk, Peter Pilot, Justus M. Brinkman, Ronald J. van Heerwaarden and Walter van der Weegen

Retraction Note to: Content validity and psychometric evaluation of functional assessment of chronic illness therapy-fatigue in patients with psoriatic arthritis

The publisher has retracted this article [1] because the incorrect version of the article was published in error.

Authors: David Cella, Hilary Wilson, Huda Shalhoub, Dennis A. Revicki, Joseph C. Cappelleri, Andrew G. Bushmakin, Elizabeth Kudlacz and Ming-Ann Hsu

Content validity and psychometric evaluation of Functional Assessment of Chronic Illness Therapy-Fatigue in patients with psoriatic arthritis

To evaluate the measurement properties (e.g., content validity, reliability, and ability to detect change) of the Functional Assessment of Chronic Illness Therapy (FACIT)-Fatigue scale in patients with active ...

Authors: David Cella, Hilary Wilson, Huda Shalhoub, Dennis A. Revicki, Joseph C. Cappelleri, Andrew G. Bushmakin, Elizabeth Kudlacz and Ming-Ann Hsu

Psychometric validation of three new condition-specific questionnaires to assess quality of life, symptoms and treatment satisfaction of patients with aortic aneurysm

To evaluate the psychometric properties of three new condition-specific questionnaires designed to assess outcomes amongst patients under pre-operative surveillance for a small abdominal aortic aneurysm (AAA) ...

Authors: Jacquelyn Romaine, George Peach, Matt Thompson, Robert J. Hinchliffe and Clare Bradley

Reliability and validity of the revised impact on family scale (RIOFS) in the hospital context

The lack of formal instruments to measure Burden in primary caregivers of Children in a hospital context is limited because mostly of published instruments are related to cancer survivors, ambulatory environme...

Authors: Yorschua F. Jalil, Gregory S. Villarroel, Alejandra A. Silva, Lilian S. Briceño, Vanessa Perez Ormeño, Nicolas S. Ibáñez, Paulina A. Méndez, Cristina F. Canales and Mireya A. Méndez

Patient voice on management of facial dermatological adverse events with targeted therapies: a qualitative study

With the increased use of targeted therapies in oncology, dermatological adverse events (dAEs) have drawn attention. Because the face is crucial for human identity and social interactions, facial dAEs have sig...

Authors: Kaori Yagasaki, Hayato Takahashi, Takeshi Ouchi, Jun Yamagami, Yasuo Hamamoto, Masayuki Amagai and Hiroko Komatsu

Development, psychometric evaluation, and initial feasibility assessment of a symptom tracker for use by patients with heart failure (HFaST)

This study aimed to develop and provide a psychometric and feasibility pilot evaluation of the Heart Failure (HF) Symptom Tracker (HFaST), a new patient-reported tool designed to facilitate communication betwe...

Authors: Eldrin F. Lewis, Theresa M. Coles, Sandy Lewis, Lauren M. Nelson, Amy Barrett, Carla DeMuro Romano, Donald E. Stull, Stuart J. Turner and Chunlan G. Chang

Accuracy of self-reported cancer treatment data in young breast cancer survivors

Patient-reports of cancer treatments are sometimes used in oncology research and clinically when medical records are unavailable. We aimed to evaluate the accuracy of patient recall in this setting.

Authors: Kelly C. Gast, Elizabeth J. Cathcart-Rake, Aaron Norman, Leah Eshraghi, Nwamaka Obidegwu, Fergus Couch, Celine Vachon and Kathryn J. Ruddy

We’re not all cut from the same cloth: TAILORing treatments for children with chronic conditions

Finding the optimal treatment for a chronic condition can be a complex and lengthy endeavor for both the patient and the clinician. To address this challenge, we developed an “N-of-1” quality improvement infra...

Authors: Rebecca N. Jerome, Jill M. Pulley, Terri L. Edwards, Alyssa B. Dickerson, Douglas Conway, Sara L. Van Driest, Gordon R. Bernard and Paul A. Harris

Patients’ responses to incidentally discovered silent brain infarcts – a qualitative study

Incidentally discovered silent brain infarcts (id-SBIs) are an understudied condition with probable clinical significance, but it is not known how patients respond to or prioritize this condition. We sought to...

Authors: Lester Y. Leung, Paul K. J. Han, Christine Lundquist, Gene Weinstein, David E. Thaler and David M. Kent

Evaluating minimal important differences and responder definitions for the asthma symptom diary in patients with moderate to severe asthma

The Asthma Symptom Diary was developed to assess severity of symptoms in patients with moderate to severe asthma, and has evidence supporting reliability and validity. Only limited information is available on ...

Authors: Gary Globe, Ingela Wiklund, Maria Mattera, Hao Zhang and Dennis A. Revicki

Exploring the responsiveness of goal attainment scaling in relation to number of goals set in a sample of hemophilia-A patients

Guidelines for the use of goal attainment scaling (GAS) recommend that the patient specify at least three goals. Even so, this may not always be feasible or align with patient preferences. Investigations into ...

Authors: Lisa McGarrigle, Jonathan C. Roberts, Michael Denne and Kenneth Rockwood

Do people with arthritis differ from healthy controls in their internal comparison standards for self-reports of health, fatigue, and pain?

Patient-reported outcomes are central for the assessment and treatment of people with chronic disease. The primary aim of this study was to determine if people with arthritis differed from healthy individuals ...

Authors: Doerte U. Junghaenel, Stefan Schneider and Arthur A. Stone

Selection of patient reported outcomes questions reflecting symptoms for patients with metastatic melanoma receiving immunotherapy

Toxicity-monitoring plays an important role in all cancer treatment, however, early recognition is vital for detecting and treating immune-related symptoms. Preparing a Patient Reported Outcomes tool and inclu...

Authors: Lærke K. Tolstrup, Lars Bastholt, Ann-Dorthe Zwisler, Karin B. Dieperink and Helle Pappot

Relationship between functional independence and psychosocial quality of life of stroke survivors undergoing outpatient rehabilitation in Maiduguri, Nigeria

There are divergent findings on the impact of functional independence on psychosocial quality of life (QoL) of stroke survivors.

Authors: Grace Vincent-Onabajo and Nyangwae Daniel Shaphant