Articles

Signs, meanings and practices of people living with human t-cell lymphotropic virus type 1 or tropical spastic myelopathy

Human T-cell lymphotropic virus type 1 (HTLV-1) spreads silently in the world’s population and causes several syndromes. Among these, HTLV-1 associated myelopathy, also called tropical spastic paraparesis (HAM...

Authors: Genildes Oliveira Santana, Ana Mary Libório, Ana Verena Galvão, Milena Pereira Pondé and Katia Nunes Sá

Development of an inventory to assess perceived barriers related to PKU treatment

According to studies of phenylketonuria (PKU), the Brazilian population’s metabolic control shows unsatisfactory indexes from childhood. Research on patients’ perceived difficulties or barriers to adherence to...

Authors: Katia Irie Teruya, Eduardo Remor and Ida Vanessa Doederlein Schwartz

Patient-reported outcomes and experiences from the perspective of colorectal cancer survivors: meta-synthesis of qualitative studies

Colorectal cancer (CRC) is prevalent in the developed world. Favourable survival rates highlight the need to better understand CRC survivors’ experiences of long-term impacts of treatment, which can in turn in...

Authors: Claudia Rutherford, Fabiola Müller, Nasiba Faiz, Madeleine T. King and Kate White

What are the optimal measures to identify anxiety and depression in people diagnosed with head and neck cancer (HNC): a systematic review

A cancer diagnosis is potentially life-threatening, likely causing distress and uncertainty, which may be psychologically debilitating. Depression and anxiety are commonly underdiagnosed and undertreated in ca...

Authors: Chindhu Shunmugasundaram, Claudia Rutherford, Phyllis N. Butow, Puma Sundaresan and Haryana M. Dhillon

Cross cultural adaptation and validation of burn specific health scale- brief in Nepali (BSHS-B-Np)

Burns are a global health problem affecting the survivors and disrupting many aspects of their lives. It is the second most common injury in rural Nepal accounting 5% of disabilities. Burn Specific Health Scal...

Authors: Regan Shakya, Misu Manandhar, Roshan Dangol and Archana Shrestha

Addressing power dynamics in community-engaged research partnerships

Successful community-engaged research depends on the quality of the collaborative partnerships between community -members and academic researchers and may take several forms depending on the purpose which dict...

Authors: Lauri Andress, Tristen Hall, Sheila Davis, Judith Levine, Kimberly Cripps and Dominique Guinn

Development of a multiplicative, multi-attribute utility function and eight single-attribute utility functions for the Health Utilities Index Mark 3 in Japan

The Health Utilities Index Mark 3 (HUI3) is a generic multi-attribute, preference-based system for assessing health-related quality of life. It is widely used overseas as an outcome measure and for estimating ...

Authors: Shinichi Noto, Takeru Shiroiwa, Makoto Kobayashi, Tatsunori Murata, Shunya Ikeda and Takashi Fukuda

Testing the validity and responsiveness of a new cancer-specific health utility measure (FACT-8D) in relapsed/refractory mantle cell lymphoma, and comparison to EQ-5D-5L

The FACT-8D is a new cancer-specific, preference-based measure (PBM) of health, derived from the Functional Assessment of Cancer Therapy – General (FACT-G) questionnaire. The FACT-8D’s measurement properties h...

Authors: Michael Herdman, Cicely Kerr, Marco Pavesi, Jamie Garside, Andrew Lloyd, Patricia Cubi-Molla and Nancy Devlin

A reporting checklist for HealthMeasures’ patient-reported outcomes: ASCQ-Me, Neuro-QoL, NIH Toolbox, and PROMIS

ASCQ-Me®, Neuro-QoL™, NIH Toolbox®, and PROMIS®, which are health-related quality of life measures collectively known as HealthMeasures, have experienced rapid uptake in the scientific community with over 1700...

Authors: Janel Hanmer, Roxanne E. Jensen and Nan Rothrock

Childhood vitiligo impacts emotional health of parents: a prospective, cross-sectional study of quality of life for primary caregivers

Individuals with vitiligo have an increased risk of depression, anxiety, social isolation and detrimental effects on body image/self-esteem. However, assessments of quality of life (QoL) impact have not focuse...

Authors: Gabriela Andrade, Sneha Rangu, Lauren Provini, Elana Putterman, Abigail Gauthier and Leslie Castelo-Soccio

A cohort study of quality of life in partners of young breast cancer survivors compared to partners of healthy controls

Partners of young breast cancer survivors (BCS) are at increased risk for deficits in quality of life (QoL). To intervene effectively, it is important to understand how the breast cancer experience impacts par...

Authors: Andrea Cohee, Susan Storey, Joseph G. Winger, David Cella, Timothy Stump, Patrick O. Monahan and Victoria L. Champion

Preliminary validation of the insomnia severity index in Danish outpatients with a medical condition

Insomnia is a frequent sleeping disorder in the general and clinical population. With an increasing proportion of health care services being provided as outpatient care, a short, valid and reliable tool is nee...

Authors: Karin Brochstedt Dieperink, Caroline Matilde Elnegaard, Bodil Winther, Anna Lohman, Ida Zerlang, Sören Möller and Graziella Zangger

No date for the PROM: the association between patient-reported health events and clinical coding in primary care

It is unclear whether data from patient-reported outcome measures (PROMs) are captured and used by clinicians despite policy initiatives. We examined the extent to which fall risk and urinary incontinence (UI)...

Authors: Paul J. Barr, Scott A. Berry, Wendolyn S. Gozansky, Deanna B. McQuillan, Colleen Ross, Don Carmichael, Andrea M. Austin, Travis D. Satterlund, Karen E. Schifferdecker, Lora Council, Michelle D. Dannenberg, Ariel T. Wampler, Eugene C. Nelson and Jonathan Skinner

Development and validation of an interpretive guide for PROMIS scores

Accurate score interpretation is required for the appropriate use of patient-reported outcome measures in clinical practice.

Authors: Nan E. Rothrock, Dagmar Amtmann and Karon F. Cook

The Treatment-induced Neuropathy Assessment Scale (TNAS): a psychometric update following qualitative enrichment

The validation of the Treatment-induced Neuropathy Assessment Scale (TNAS v2.0), a patient-reported outcome measure of symptoms associated with cancer treatment-induced peripheral neuropathy (TIPN), was previo...

Authors: Tito R. Mendoza, Loretta A. Williams, Qiuling Shi, Xin Shelley Wang, Oluwatosin Bamidele, Jeanie F. Woodruff and Charles S. Cleeland

Perception of quality of life in people experiencing or having experienced a Clostridioides difficile infection: a US population survey

Although the incidence, severity and mortality of Clostridioides (Clostridium) difficile infection (CDI) have been increasing, patients’ quality of life changes resulting from CDI have not been studied thoroughly...

Authors: Lise Lurienne, Pierre-Alain Bandinelli, Thibaut Galvain, Charles-Alexis Coursel, Caterina Oneto and Paul Feuerstadt

Development and content validation of two new patient-reported outcome measures for endometriosis: the Endometriosis Symptom Diary (ESD) and Endometriosis Impact Scale (EIS)

Endometriosis is a common, chronic, impactful condition in women of reproductive age. In the absence of established sensitive and specific biomarkers, disease severity is determined by patient-reported symptom...

Authors: Adam Gater, Fiona Taylor, Christian Seitz, Christoph Gerlinger, Kamonthip Wichmann and Claudia Haberland

The colon cancer screening behaviours survey for South Asians: a pilot study of feasibility and psychometric evaluation

The purpose of the study was to pilot test the English and Urdu version of the Colon Cancer Screening Behaviours Survey among South Asians in Canada. The first objective was to evaluate feasibility of administ...

Authors: Joanne Crawford, Frederick Morfaw, Farah Ahmad, Lehana Thabane and Angela Frisina

Establishing the content validity of PROMIS Pediatric pain interference, fatigue, sleep disturbance, and sleep-related impairment measures in children with chronic kidney disease and Crohn’s disease

PROMIS Pediatric patient-reported outcome measures were developed with children from the general population, and their content validity has not been established in children with chronic disease. This study was...

Authors: Christopher B. Forrest, Kathryn D. Forrest, Jennifer L. Clegg, Anna de la Motte, Sandra Amaral, Andrew B. Grossman and Susan L. Furth

The development of PROmunication: a training-tool for clinicians using patient-reported outcomes to promote patient-centred communication in clinical cancer settings

The value of using real-time patient-reported outcome (PRO) measures in cancer communication has gained attention both in the clinic and in research. Despite this, no internationally accepted guidelines or tra...

Authors: Pernille C. Skovlund, Sissel Ravn, Lene Seibaek, Henriette Vind Thaysen, Kirsten Lomborg and Berit Kjærside Nielsen

Japanese health utilities index mark 3 (HUI3): measurement properties in a community sample

The McMaster Health Utilities Index Mark 3 (HUI3) is a generic multi-attribute, preference-based system for assessing health-related quality of life (HRQOL). This study describes the translation procedures and...

Authors: Shinichi Noto and Takamoto Uemura

Does response shift impact interpretation of change even among scales developed using item response theory?

Response-shift effects impact the interpretation of change in quality-of-life (QOL) measures developed with classical test theory (CTT) methods. This study evaluated the impact of response shift on measures de...

Authors: Carolyn E. Schwartz, Brian D. Stucky, Wesley Michael and Bruce D. Rapkin

A scoping review and mapping exercise comparing the content of patient-reported outcome measures (PROMs) across heart disease-specific scales

Over the past decade, the importance of person-centered care has led to increased interest in patient-reported outcome measures (PROMs). In cardiovascular care, selecting an appropriate PROM for clinical use o...

Authors: Beatrix Algurén, Michaela Coenen, Dan Malm, Bengt Fridlund, Jan Mårtensson and Kristofer Årestedt

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