Articles

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

Psychometric evaluation of the Diabetes Injection Device Experience Questionnaire (DID-EQ) and Diabetes Injection Device Preference Questionnaire (DID-PQ)

Previous research has examined patient perceptions of insulin injection devices. However, a range of injectable medications other than insulin are now used to treat type 2 diabetes. No patient-reported outcome...

Authors: Louis S. Matza, Katie D. Stewart, Rosirene Paczkowski, Karin S. Coyne, Brooke Currie and Kristina S. Boye

How do patient reported outcome measures (PROMs) support clinician-patient communication and patient care? A realist synthesis

In this paper, we report the findings of a realist synthesis that aimed to understand how and in what circumstances patient reported outcome measures (PROMs) support patient-clinician communication and subsequ...

Authors: Joanne Greenhalgh, Kate Gooding, Elizabeth Gibbons, Sonia Dalkin, Judy Wright, Jose Valderas and Nick Black

Development of the Diabetes Injection Device Experience Questionnaire (DID-EQ) and Diabetes Injection Device Preference Questionnaire (DID-PQ)

Previous research has examined patient perceptions of insulin injection devices. However, injectable medications other than insulin are increasingly used to treat type 2 diabetes, including GLP-1 receptor agon...

Authors: Louis S. Matza, Kristina S. Boye, Katie D. Stewart, Rosirene Paczkowski, Jessica Jordan and Lindsey T. Murray

Literature review to assemble the evidence for response scales used in patient-reported outcome measures

In the development of patient-reported outcome (PRO) instruments, little documentation is provided on the justification of response scale selection. The selection of response scales is often based on the devel...

Authors: Katharine Gries, Pamela Berry, Magdalena Harrington, Mabel Crescioni, Mira Patel, Katja Rudell, Shima Safikhani, Sheryl Pease and Margaret Vernon

Response scale selection in adult pain measures: results from a literature review

The purpose of this literature review was to examine the existing patient-reported outcome measurement literature to understand the empirical evidence supporting response scale selection in pain measurement fo...

Authors: Shima Safikhani, Katharine S. Gries, Jeremiah J. Trudeau, David Reasner, Katja Rüdell, Stephen Joel Coons, Elizabeth Nicole Bush, Jennifer Hanlon, Lucy Abraham and Margaret Vernon

Literature review to characterize the empirical basis for response scale selection in pediatric populations

Despite the importance of response option selection for patient-reported outcome measures, there seems to be little empirical evidence for the selected scale type. This article provides an overview of the publ...

Authors: April N. Naegeli, Jennifer Hanlon, Katharine S. Gries, Shima Safikhani, Anna Ryden, Mira Patel, Mabel Crescioni and Margaret Vernon

PRO-based follow-up as a means of self-management support – an interpretive description of the patient perspective

There is an increasing focus on the use of patient-reported outcome (PRO) measures to improve the quality and effectiveness of health care. PRO-based follow-up is a new model of service delivery, where the pat...

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

Consequences of screening in abdominal aortic aneurysm: development and dimensionality of a questionnaire

In interview studies, men under surveillance for screening-detected abdominal aortic aneurysms have reported ambivalence towards this diagnosis: the knowledge was welcomed together with worries, feelings of an...

Authors: John Brodersen, Anders Hansson, Minna Johansson, Volkert Siersma, Marcus Langenskiöld and Monica Pettersson

Design and introduction of a quality of life assessment and practice support system: perspectives from palliative care settings

Quality of life (QOL) assessment instruments, including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs), are increasingly promoted as a means of enabling clinicians t...

Authors: Richard Sawatzky, Esther Laforest, Kara Schick-Makaroff, Kelli Stajduhar, Sheryl Reimer-Kirkham, Marian Krawczyk, Joakim Öhlén, Barbara McLeod, Neil Hilliard, Carolyn Tayler and S. Robin Cohen

Integrating the patient voice with clinician reports to identify a hepatocellular carcinoma-specific subset of treatment-related symptomatic adverse events

Incorporating patient reporting of symptomatic adverse events (AEs) is important in evaluating safety and tolerability in cancer clinical trials. The Patient-Reported Outcomes version of the Common Terminology...

Authors: Rebecca M. Speck, William R. Lenderking and James W. Shaw

Patient reported outcomes – experiences with implementation in a University Health Care setting

Patient-reported outcomes (PROs) have traditionally been implemented through a manual process of paper and pencil with little standardization throughout a Healthcare System. Each practice has asked patients sp...

Authors: Joshua Biber, Dominik Ose, Jenny Reese, Anna Gardiner, Julio Facelli, Joshua Spuhl, Darrel Brodke, Vivian S. Lee, Rachel Hess and Howard Weeks

Patients’ experience of recurrent/metastatic head and neck squamous cell carcinoma and their perspective on the EORTC QLQ-C30 and QLQ-H&N35 questionnaires: a qualitative study

Head and neck squamous cell carcinoma (HNSCC) and its associated treatments may affect all aspects of patients’ health-related quality of life (HRQoL). Although the EORTC QLQ-H&N35 is regularly administered to...

Authors: Arnold Degboe, Sarah L. Knight, Katarina Halling, Andrew Trigg, Tamara Al-Zubeidi, Natalie Aldhouse, Helen Kitchen, Lori Wirth and Simon N. Rogers

The feasibility of implementing the ICHOM Standard Set for Hip and Knee Osteoarthritis: a mixed-methods evaluation in public and private hospital settings

There is growing international momentum for standardising patient outcome assessment and using patient-reported outcome measures (PROMs) to capture outcomes that matter to patients. The International Consortiu...

Authors: Ilana N. Ackerman, Bernarda Cavka, Jacob Lippa and Andrew Bucknill

Measurement properties of the German version of the IKDC subjective knee form (IKDC-SKF)

To examine the measurement properties of the German International Knee Documentation Committee Subjective Knee Form (IKDC-SKF) in knee disorder patients.

Authors: Danica Kümmel, Stefan Preiss, Laurent P. Harder, Michael Leunig and Franco M. Impellizzeri

Burden of renal angiomyolipomas associated with tuberous sclerosis complex: results of a patient and caregiver survey

Tuberous sclerosis complex (TSC) is a rare genetic disorder characterized by benign tumors in multiple organs, including non-cancerous kidney lesions known as renal angiomyolipomas. This study’s objective is t...

Authors: Anne M. Rentz, Anne M. Skalicky, Zhimei Liu, David W. Dunn, Michael D. Frost, Jo Anne Nakagawa, Judith Prestifilippo, Qayyim Said and James W. Wheless

The relationship between comorbidity medication adherence and health related quality of life among patients with cancer

Studies have demonstrated that comorbidities compound the adverse influence of cancer on health-related quality of life (HRQoL). Comorbidities adversely impact adherence to cancer treatment. Additionally, adhe...

Authors: Dana Drzayich Antol, Adrianne Waldman Casebeer, Raya Khoury, Todd Michael, Andrew Renda, Sari Hopson, Aparna Parikh, Alisha Stein, Mary Costantino, Stephen Stemkowski and Mikele Bunce

Health-related quality of life burden of nonalcoholic steatohepatitis: a robust pragmatic literature review

Nonalcoholic steatohepatitis (NASH) is a form of chronic liver disease (CLD): patients have an increased risk of developing cirrhosis, liver failure, and complications (e.g. hepatocellular carcinoma). NASH has...

Authors: Tessa Kennedy-Martin, Jay P. Bae, Rosirene Paczkowski and Emily Freeman

Patient-reported outcomes for patients with metastatic castration-resistant prostate cancer receiving docetaxel and Atrasentan versus docetaxel and placebo in a randomized phase III clinical trial (SWOG S0421)

SWOG S0421 was a large randomized trial comparing docetaxel/prednisone plus placebo (DPP) to docetaxel/prednisone plus atrasentan over 12 cycles for patients with metastatic castration-resistant prostate cance...

Authors: Joseph M. Unger, Katherine Griffin, Gary W. Donaldson, Karen M. Baranowski, Margorie J. Good, Eunicia Reburiano, Maha Hussain, Paul J. Monk, Peter J. Van Veldhuizen, Michael A. Carducci, Celestia S. Higano, Primo N. Lara, Catherine M. Tangen, David I. Quinn, James L. Wade, III…

Rasch analysis in the development of the NutriQoL® questionnaire, a specific health-related quality of life instrument for home enteral nutrition

Home enteral nutrition (HEN) is a therapeutic method used in patients who are unable to ingest the required amounts of nutrients but retain a functional gastrointestinal tract. The objective of this study was ...

Authors: Antonio Apezetxea, Lourdes Carrillo, Felipe Casanueva, Cristina de la Cuerda, Federico Cuesta, Jose Antonio Irles, Maria Nuria Virgili, Miquel Layola and Luis Lizán