Articles

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

Psychosocial developmental trajectory of a cohort of young adults born very preterm and/or with a very low birth weight in the Netherlands

The achievement of age-specific developmental milestones in youth is of great importance to the adjustment in adult life. Young adults who were born preterm, might go through a different developmental trajecto...

Authors: Sylvia M. van der Pal, Heleen Maurice-Stam, Martha A. Grootenhuis, Aleid G. van Wassenaer-Leemhuis and Gijsbert H. W. Verrips

An overview of using qualitative techniques to explore and define estimates of clinically important change on clinical outcome assessments

Establishing meaningful change thresholds for Clinical Outcome Assessments (COA) is critical for score interpretation. While anchor- and distribution-based statistical methods are well-established, qualitative...

Authors: Hannah Staunton, Tom Willgoss, Linda Nelsen, Claire Burbridge, Kate Sully, Diana Rofail and Rob Arbuckle

Measuring quality of life of primary antibody deficiency patients using a disease-specific health-related quality of life questionnaire for common variable immunodeficiency (CVID_QoL)

Common variable immunodeficiency (CVID) and other primary antibody deficiencies (PAD) are a heterogeneous group of > 300 congenital disorders affecting the immune system. Until recently, efforts to measure hea...

Authors: Jintana B. Andersen, Knut Midttun and Kristin J. B. Feragen

PROMIS Fatigue short forms are reliable and valid in adults with rheumatoid arthritis

Fatigue is prevalent and impactful in rheumatoid arthritis (RA). There is no standardized measure for its assessment nor data concerning the performance of PROMIS-Fatigue short forms (SFs) in people with RA. W...

Authors: Clifton O. Bingham III, Anna Kristina Gutierrez, Alessandra Butanis, Vivian P. Bykerk, Jeffrey R. Curtis, Amye Leong, Anne Lyddiatt, W. Benjamin Nowell, Ana Maria Orbai and Susan J. Bartlett

Correction to: do patients consider computer-adaptive measures more appropriate than static questionnaires?

Following publication of the original article [1], the authors reported three of their given name have been erroneously tagged as their family names. The correct names are: give name Caroline family name Marti...

Authors: Eva-Maria Gamper, Caroline Martini, Morten Aagaard Petersen, Irene Virgolini, Bernhard Holzner and Johannes M. Giesinger

Validation of a health screening questionnaire for primary care using Rasch models

Health inequality is on the rise due to various social and individual factors. While preventive health checks (PHC) aim to counteract health inequality, there is robust evidence against the use of PHC in gener...

Authors: Jonathan David Comins, Kirsten Schierup Freund, Karl Bang Christensen, Jørgen Lous and John Brodersen

Hearing siblings’ voices: exploring the (online) support needs of siblings of children with a chronic condition

Siblings of children and adolescents with a chronic condition are at risk for developing psychosocial problems. It is important, that they receive appropriate support according to their needs. A sibling-specif...

Authors: M. M. H. Joosten, H. Maurice-Stam, L. Scholten and M. A. Grootenhuis

Understanding key symptoms, side effects, and impacts of HR+/HER2- advanced breast cancer: qualitative study findings

Patients with breast cancer experience a variety of disease symptoms and treatment-related side effects that can adversely affect functioning. The breast cancer experience may differ across disease stages and ...

Authors: Nina Galipeau, Brittany Klooster, Meaghan Krohe, Derek H. Tang, Dennis A. Revicki and David Cella

Eliciting patient-important outcomes through group brainstorming: when is saturation reached?

Group brainstorming is a technique for the elicitation of patient input that has many potential uses, however no data demonstrate concept saturation. In this study we explore concept saturation in group brains...

Authors: Marianna LaNoue, Alexzandra Gentsch, Amy Cunningham, Geoffrey Mills, Amanda M. B. Doty, Judd E. Hollander, Brendan G. Carr, Larry Loebell, Gail Weingarten and Kristin L. Rising

The measurement of physical functioning among patients with Tenosynovial Giant Cell Tumor (TGCT) using the Patient-Reported Outcomes Measurement Information System (PROMIS)

Tenosynovial giant cell tumor (TGCT), a rare, locally aggressive neoplasm of the synovium of joints and tendon sheaths, is associated with joint destruction, pain and swelling. Impacts on physical function (PF...

Authors: Heather L. Gelhorn, Xin Ye, Rebecca M. Speck, Sandra Tong, John H. Healey, Susan V. Bukata, Richard D. Lackman, Lindsey Murray, Grant Maclaine, William R. Lenderking, Henry H. Hsu, Paul S. Lin and William D. Tap

Patient experience after kidney transplant: a conceptual framework of treatment burden

Kidney transplant recipients face a lifelong regimen of medications, health monitoring and medical appointments. This work involved in managing one’s health and its impact on well-being are referred to as trea...

Authors: Elizabeth C. Lorenz, Jason S. Egginton, Mark D. Stegall, Andrea L. Cheville, Raymond L. Heilman, Sumi Sukumaran Nair, Martin L. Mai and David T. Eton

Do patients consider computer-adaptive measures more appropriate than static questionnaires?

Computer-adaptive tests (CAT) use individualised sets of questions to assess patient-reported health states, whereas static (conventional) questionnaires present the same questions to all patients. CAT has bee...

Authors: Eva-Maria Gamper, Caroline Martini, Morten Aagaard Petersen, Irene Virgolini, Bernhard Holzner and Johannes M. Giesinger

RETRACTED ARTICLE: 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 ps...

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

Health utilities and parental quality of life effects for three rare conditions tested in newborns

Measurement of health utilities is required for economic evaluations. Few studies have evaluated health utilities for rare conditions; even fewer have incorporated disutility that may be experienced by caregiv...

Authors: Norma-Jean Simon, John Richardson, Ayesha Ahmad, Angela Rose, Eve Wittenberg, Brittany D’Cruz and Lisa A. Prosser

Adapting the Interpersonal Quality in Family Planning care scale to assess patient perspectives on abortion care

Women value receiving quality interpersonal care during abortion services, yet no measure exists to assess this outcome from patients’ perspectives. We sought to adapt the Interpersonal Quality in Family Plann...

Authors: Kyla Z. Donnelly, Christine Dehlendorf, Reiley Reed, Daniela Agusti and Rachel Thompson

Development and adaptation of patient-reported outcome measures for patients who experience itch associated with primary biliary cholangitis

To conduct qualitative interviews to evaluate and refine the Itch Diary (ID) and weekly version of the PBC-40 in patients with itching associated with primary biliary cholangitis (PBC).

Authors: Mona L. Martin, Larissa Stassek, Steven I. Blum, Ashish V. Joshi and David Jones

Psychometric properties of the 45-item supportive care needs survey—partners and caregivers - Dutch (SCNS-P&C45-D) in partners of patients with breast cancer

To test the psychometric properties of the Dutch 45-item Supportive Care Needs Survey—Partners and Caregivers (SCNS-P&C45-D) among partners of women with breast cancer living in the Netherlands.

Authors: Mark J. A. Rietveld, Esmee J. Peters, Olga Husson, Floortje K. Ploos van Amstel, Y. Kamm, Sieta Sijtsema, Marieke Diepenbroek, Josca Heier, Celine Zoetbrood, Marijke Zielstra, Sylvie D. Lambert, Judith B. Prins and Petronella B. Ottevanger

Exploring the implementation of patient-reported outcome measures in cancer care: need for more real-world evidence results in the peer reviewed literature

To explore the existing evidence of the real-world implementation of patient-reported outcomes (PROs) in oncology clinical practice and address two aims: (1) summarize available evidence of PRO use in clinical...

Authors: Milena Anatchkova, Sarah M. Donelson, Anne M. Skalicky, Colleen A. McHorney, Dayo Jagun and Jennifer Whiteley

Cross-cultural adaptatiion and validation of the stroke specific quality of life 2.0 scale into Hausa language

The Stroke Specific Quality of Life 2.0 (SS-QoL 2.0) is a widely used scale that has been cross-culturally adapted to many languages including Yoruba, one of the three major Nigerian languages. Non-availabilit...

Authors: Marufat O. Odetunde, Aderonke O. Akinpelu and Adesola C. Odole

Proceedings of Patient Reported Outcome Measures (PROMs) Conference Birmingham 2018

Authors:

Psychometric validation of the work productivity and activity impairment questionnaire in ulcerative colitis: results from a systematic literature review

Patients with ulcerative colitis, a type of inflammatory bowel disease, report negative impacts of disease symptoms on work-related outcomes, including absenteeism and presenteeism. As a way to better understa...

Authors: Aaron Yarlas, Stephen M. Maher, Martha S. Bayliss, Andrew Lovley, Joseph C. Cappelleri and Marco D. DiBonaventura

The content validity of the ANMS GCSI-DD in patients with idiopathic or diabetic gastroparesis

The American Neurogastroenterology and Motility Society Gastroparesis Cardinal Symptom Index-Daily Diary (ANMS GCSI-DD) was developed to meet Food and Drug Administration (FDA) recommendations for patient-repo...

Authors: Dennis A. Revicki, Sara Lavoie, Rebecca M. Speck, Jorge Puelles, Braden Kuo, Michael Camilleri, Cristina Almansa and Henry P. Parkman

Impact of short stature on health-related quality of life in long-term survivors of acute lymphoblastic leukemia in childhood and adolescence

Some survivors of acute lymphoblastic leukemia (ALL) in childhood and adolescence exhibit short stature, especially if their treatment included cranial irradiation. The impact of this outcome on health-related...

Authors: Laura Collins, Uma Athale, Amy Cranston and Ronald Barr

Bifactor model of the CASP-12’s general factor for measuring quality of life in older patients

Authors: Matthew J. Kerry

Application of a Bayesian graded response model to characterize areas of disagreement between clinician and patient grading of symptomatic adverse events

Traditional concordance metrics have shortcomings based on dataset characteristics (e.g., multiple attributes rated, missing data); therefore it is necessary to explore supplemental approaches to quantifying a...

Authors: Thomas M. Atkinson, Bryce B. Reeve, Amylou C. Dueck, Antonia V. Bennett, Tito R. Mendoza, Lauren J. Rogak, Ethan Basch and Yuelin Li

Development and psychometric evaluation of a Dutch-translated shorter Breast Cancer Treatment Outcome Scale (Dutch BCTOS-13)

To create a Dutch translated short version of the Breast Cancer Treatment Outcome Scale (BCTOS) and validate it in patients who have completed both breast conserving surgery and adjuvant radiotherapy.

Authors: Gerson M. Struik, Frank W. de Jongh, Erwin Birnie, Jean-Philippe Pignol and Taco M. Klem

Proceedings of the 4th Annual PROMIS® Health Organization Conference: Global Advances in Methodology and Clinical Science

Authors:

Depressive symptom prevalence after intracerebral hemorrhage: a multi-center study

Depressive symptoms in patients with intracerebral hemorrhage (ICH) are common and are associated with worse outcomes. It is not well described how often depressive symptoms are ascertained and treated in larg...

Authors: Brandon A. Francis, Jennifer Beaumont, Matthew B. Maas, Eric M. Liotta, David Cella, Shyam Prabhakaran, Jane Holl, Abel Kho and Andrew M. Naidech

Feasibility of collecting retrospective patient reported outcome measures (PROMs) in emergency hospital admissions

Outcome of emergency admissions is usually limited to mortality with little attempt to capture the views of health status of survivors. This is because of the challenge of determining patient reported outcome ...

Authors: Esther Kwong and Nick Black

How do depressed patients evaluate their quality of life? A qualitative study

This is a qualitative study that aims to investigate the effect of depressive status on responses to items on the WHO quality of life assessment instrument (WHOQOL-Bref), comparing which aspects of the individ...

Authors: Jacques J. Zimmermann, Maria Lucia Tiellet Nunes and Marcelo P. Fleck

Standard setting for a novel esophageal conduit questionnaire: CONDUIT Report Card

The purpose of this study was to establish the clinical thresholds for five domains (dysphagia, reflux, dumping-hypoglycemia, dumping-GI symptoms, pain) to support the use of the CONDUIT questionnaire as a scr...

Authors: Minji K. Lee, Kathleen J. Yost, Karlyn E. Pierson, Amy J. Schrandt, Bobbie J. Skaare and Shanda H. Blackmon

Patient centered research to improve community involvement (PaRTICIpate) in diabetes self-management: a conference series for developing collaborations between researchers, stakeholders, and patients

A patient-centered approach to research development is important to the creation of research evidence that is meaningful and beneficial to patients. Collaboration between patients, stakeholders, and researcher...

Authors: Ashley S. Crumby, Erin R. Holmes and Meagen Rosenthal

Mastering life together - symptom management, views, and experiences of relatives of persons with CPTSD: a grounded theory study

Complex posttraumatic stress disorder is described as a chronic condition with several severe and concurrent symptoms. Symptoms influence and impair not only the affected individuals but also their social surr...

Authors: Manuel P. Stadtmann, Andreas Maercker, Jochen Binder and Wilfried Schnepp

Health-related quality of life, culture and communication: a comparative study in children with cancer in Argentina and Sweden

Malignant disorders in childhood are life-threatening conditions, and issues regarding the children’s health-related quality of life (HRQOL) are crucial in paediatric oncology. The overall aim of this study wa...

Authors: Emelie Stenmarker, Karin Mellgren, Mónica Matus, Anna Schroder Hakansson and Margaretha Stenmarker

Important differences and meaningful changes for the Functional Assessment of Cancer Therapy-Cognitive Function (FACT-Cog)

We estimated clinically important, group-level differences in self-reported cognitive function for the Functional Assessment of Cancer Therapy-Cognitive Function (FACT-Cog) instrument. We also investigated ind...

Authors: M L Bell, H M Dhillon, V J Bray and J L Vardy

The facilitators and barriers to implementing patient reported outcome measures in organisations delivering health related services: a systematic review of reviews

There is increasing interest in using Patient Reported Outcome Measures (PROMs) within organisations delivering health related services. However, organisations have had mixed success in implementing PROMs and ...

Authors: Alexis Foster, Liz Croot, John Brazier, Janet Harris and Alicia O’Cathain

The association between pregnancy, pelvic girdle pain and health-related quality of life – a comparison of two instruments

The main purposes in this cross-sectional study were to study the impact of pregnancy and pelvic girdle pain (PGP) on health related quality of life (HRQoL), by comparing the scores on different domains of two...

Authors: Pernille Stendal Robinson, Arun Prasad Balasundaram, Nina Køpke Vøllestad and Hilde Stendal Robinson