Articles

Patient-reported outcomes feedback report for knee arthroplasty patients should present selective information in a simple design - findings of a qualitative study

Technical innovation to assess patient-reported outcomes (PROs) facilitates their implementation in clinical practice. In particular, mobile applications (apps) allow PROs to be assessed outside of the clinica...

Authors: Kathrin I. Fischer, Diarmuid De Faoite and Matthias Rose

Implementation of a Patient Reported Experience Measure in a Dutch disability care organisation: a qualitative study

Patient Reported Experience Measures are promoted to be used as an integrated measurement approach in which outcomes are used to improve individual care (micro level), organisational quality (meso level) and e...

Authors: Marjolein van Rooijen, Stephanie Lenzen, Ruth Dalemans, Albine Moser and Anna Beurskens

An emerging framework for fully incorporating public involvement (PI) into patient-reported outcome measures (PROMs)

Patient-reported outcome measures (PROMs) are widely used in the United Kingdom (UK) and internationally to report and monitor patients’ subjective assessments of their symptoms and functional status and also ...

Authors: J. Carlton, T. Peasgood, S. Khan, R. Barber, J. Bostock and A. D. Keetharuth

Patient-reported outcome measures in the interaction between patient and clinician – a multi-perspective qualitative study

This article addresses patient-reported outcome (PRO)-based follow-up used as a substitute for regularly scheduled follow-ups. In PRO-based follow-up, patients’ PRO data filled in by the patients at home are u...

Authors: Caroline Trillingsgaard Mejdahl, Liv Marit Valen Schougaard, Niels Henrik Hjollund, Erik Riiskjær and Kirsten Lomborg

Development of an item pool for a questionnaire on the psychosocial consequences of hypertension labelling

Hypertension is the most prevalent risk factor for cardiovascular disease globally. Roughly one-third of the adult population has hypertension. However, most people diagnosed with hypertension do not benefit f...

Authors: János Valery Gyuricza, Ana Flávia Pires Lucas d’Oliveira, Lucas Bastos Marcondes Machado and John Brodersen

Development and psychometric properties of the Thai Graves’ ophthalmopathy quality of life (GO-QOL) questionnaire

To develop and assess the psychometric properties of the Thai version of the Graves’ Ophthalmopathy Quality of Life (GO-QOL) questionnaire.

Authors: Mingkwan Lumyongsatien, Benjama Keeratidamkerngsakul, Kanokrat Pornpanich, Sumalee Vangveeravong, Preamjit Saonanon, Damrong Wiwatwongwana, Pornchai Mahaisavariya, Orapan Aryasit and Krit Pongpirul

Development of a framework with tools to support the selection and implementation of patient-reported outcome measures

Patient reported outcomes (PROs) provide information on a patient’s health status coming directly from the patient. Measuring PROs with patient reported outcome measures (PROMs) has gained wide interest in cli...

Authors: Philip J. van der Wees, Eva W. Verkerk, Marjolein E. A. Verbiest, Marloes Zuidgeest, Carla Bakker, Jozé Braspenning, Dolf de Boer, Caroline B. Terwee, Ildikó Vajda, Anna Beurskens and Simone A. van Dulmen

Haematologists’ experiences implementing patient reported outcome measures (PROMs) in an outpatient clinic: a qualitative study for applied practice

The patient-doctor relationship is crucial to provide person-centred care, allowing the alleviation of symptom burden caused by disease or treatment. Implementing Patient Reported Outcome Measures (PROMs) is s...

Authors: Stine Thestrup Hansen, Mette Kjerholt, Sarah Friis Christensen, Bibi Hølge-Hazelton and John Brodersen

Expectations of breast-conserving therapy: a qualitative study

Early-stage breast cancer is often treated with breast-conserving therapy (BCT), including lumpectomy with radiation therapy. Patients’ expectations of BCT remain largely unknown. Expectations affect perceptio...

Authors: Sarah Fuzesi, Karima Becetti, Anne F. Klassen, Mary L. Gemignani and Andrea L. Pusic

BOMET-QoL-10 questionnaire for breast cancer patients with bone metastasis: the prospective MABOMET GEICAM study

Bone metastasis (BM) is the most common site of disease in metastatic breast cancer (MBC) patients. BM impacts health-related quality of life (HRQoL). We tested prospectively the psychometric properties of the...

Authors: A. Barnadas, M. Muñoz, M. Margelí, J. I. Chacón, J. Cassinello, S. Antolin, E. Adrover, M. Ramos, E. Carrasco, M. A. Jimeno, B. Ojeda, X. González, S. González, M. Constenla, J. Florián, A. Miguel…

Development and content validation of the Healthcare Transition Outcomes Inventory for young adults with type 1 diabetes

The literature on the specification and measurement of the outcomes of the healthcare transition from pediatric to adult centered-care is scarce and methodologically weak. To address these gaps, we conducted a...

Authors: Jessica Pierce, Karen Aroian, Elizabeth Schifano, Anthony Gannon and Tim Wysocki

A systematic review of the measurement properties of patient reported outcome measures used for adults with an ankle fracture

Ankle fractures are painful and debilitating injuries that pose a significant burden to society and healthcare systems. Patient reported outcome measures (PROMs) are commonly used outcome measures in clinical ...

Authors: Rebecca McKeown, David R. Ellard, Abdul-Rasheed Rabiu, Eleni Karasouli and Rebecca S. Kearney

The expansion and validation of a new upper extremity item bank for the Patient-Reported Outcomes Measurement Information System® (PROMIS)

The Patient-Reported Outcomes Measurement Information System® (PROMIS) includes a Physical Function (PF) item bank and an Upper Extremity (UE) item bank, which is composed of a subset of items from the PF bank...

Authors: Aaron J. Kaat, Chester “ Trip” Buckenmaier III, Karon F. Cook, Nan E. Rothrock, Benjamin D. Schalet, Richard C. Gershon and Mark S. Vrahas

PHO 2019 Conference Abstracts

Authors:

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