Articles

Patient-reported outcome measures for retinoblastoma: a scoping review

Retinoblastoma is a childhood retinal cancer with lifelong consequences such as vision loss and increased risk of second cancer. Patient-reported outcome measures (PROMs) are instruments that measure outcomes ...

Authors: Ana Janic, Sylvie Bowden, Sarah Levy, Jennifer Stinson and Helen Dimaras

Patients’ experiences of Parkinson’s disease: a qualitative study in glucocerebrosidase and idiopathic Parkinson’s disease

Approximately 7–10% of Parkinson’s disease (PD) patients carry a GBA (Glucocerebrosidase) mutation (GBA-PD patients), which may influence the disease’s clinical course.

Authors: N. Bonner, S. Bozzi, L. Morgan, B. Mason, M. J. Peterschmitt, T. Z. Fischer, R. Arbuckle and M. Reaney

Symptoms and impacts in anemia of chronic kidney disease

Anemia is a frequent complication of chronic kidney disease (CKD) that negatively affects patients’ health-related quality of life.

Authors: Susan D. Mathias, Steven I. Blum, Vanja Sikirica, Kirsten L. Johansen, Hilary H. Colwell and Tony Okoro

Intensive care unit (ICU) diaries and the experiences of patients’ families: a grounded theory approach in a lower middle-income country (LMIC)

An intensive care unit (ICU) diary is a relatively new concept in low middle-income countries (LMICs). Illiteracy and socio-cultural inhibitions may affect the use and utility of this intervention, which has p...

Authors: Swagata Tripathy, Swati Priyadarshini Acharya, Alok Kumar Sahoo, Jayanta Kumar Mitra, Kishen Goel, Suma Rabab Ahmad and Upendra Hansdah

First stage psychometric testing of a new instrument for adolescents with visual impairment: the Participation and Activity Inventory for Children and Youth (PAI-CY) 13–17 years

To assess participation of children with visual impairment, the Participation and Activity Inventory for Children and Youth (PAI-CY) was recently developed. This study assessed some initial psychometric proper...

Authors: Ellen B. M. Elsman, Ruth M. A. van Nispen and Gerardus H. M. B. van Rens

Psychometric properties of a custom Patient-Reported Outcomes Measurement Information System (PROMIS) physical function short form and worst stiffness numeric rating scale in tenosynovial giant cell tumors

The purpose of this study was to evaluate the psychometric properties of the PROMIS-Physical Function (PF) and Worst Stiffness Numeric Rating Scale (NRS) among patients with tenosynovial giant cell tumors (TGCT).

Authors: Rebecca M. Speck, Xin Ye, Nicholas M. Bernthal and Heather L. Gelhorn

Patient-reported quality-of-life outcomes in relation to provider-assessed adverse events during head and neck radiotherapy

To assess the relationship between patient-reported quality-of-life (QOL) outcomes and provider-assessed adverse events (AEs) during head-and-neck (H&N) radiotherapy (RT).

Authors: Joshua R. Niska, Cameron S. Thorpe, Michele Y. Halyard, Angelina D. Tan, Pamela J. Atherton, Amylou C. Dueck, Samir H. Patel and Jeff A. Sloan

Health-related quality of life, self-reported impairments and activities of daily living in relation to muscle function in post-polio syndrome

The symptoms of post-polio syndrome (PPS) and its resulting disabilities can affect quality of life and the ability to perform daily activities. No study has comprehensively analysed how various patient-report...

Authors: Vanya Gocheva, Patricia Hafner, Anna-Lena Orsini, Simone Schmidt, Sabine Schaedelin, Nicole Rueedi, Daniela Rubino-Nacht, Peter Weber and Dirk Fischer

Patient-reported outcome instruments used in immune-checkpoint inhibitor clinical trials in oncology: a systematic review

Immune-checkpoint inhibitors (ICI) have shown significant benefits for overall survival across various cancer types. Patient-reported outcomes (PROs) are assessed in clinical trials as a measure of efficacy. H...

Authors: Sara Colomer-Lahiguera, Denise Bryant-Lukosius, Sarah Rietkoetter, Lorraine Martelli, Karin Ribi, Donna Fitzpatrick-Lewis, Diana Sherifali, Angela Orcurto, Rosalyn Juergens and Manuela Eicher

Validation of the 3-item What Engagement Looks Like (WELL) scale in patients with diabetes

Patients’ behaviors play a key role in chronic disease management, but how effective they are may depend on how engaged they feel. The objective was to develop a short measure of how much patients felt engaged...

Authors: Suzanne Brodney, K. D. Valentine, Floyd J. Fowler Jr and Michael J. Barry

A multicenter paper-based and web-based system for collecting patient-reported outcome measures in patients undergoing local treatment for prostate cancer: first experiences

To give an overview of the multicenter Prostate Cancer Outcomes (PCO) study, involving paper-based and web-based collection of patient-reported outcome measures (PROM) in patients undergoing local treatment fo...

Authors: Christoph Kowalski, Rebecca Roth, Günther Carl, Günter Feick, Alisa Oesterle, Andreas Hinkel, Thomas Steiner, Marko Brock, Björn Kaftan, Rainer Borowitz, Niko Zantl, Axel Heidenreich, Andreas Neisius, Christopher Darr, Christian Bolenz, Burkhard Beyer…

Development of an electronic patient-reported outcome measure (ePROM) system to aid the management of patients with advanced chronic kidney disease

Effective management of patients with chronic kidney disease (CKD) relies on timely detection of clinical deterioration towards end stage kidney failure. We aimed to design an electronic Patient-Reported Outco...

Authors: Derek Kyte, Nicola Anderson, Ram Auti, Olalekan Lee Aiyegbusi, Jon Bishop, Andrew Bissell, Elizabeth Brettell, Melanie Calvert, Marie Chadburn, Paul Cockwell, Mary Dutton, Helen Eddington, Elliot Forster, Gabby Hadley, Natalie J. Ives, Louise Jackson…

A prospective study to validate the functional assessment of cancer therapy (FACT) for epidermal growth factor receptor inhibitor (EGFRI)-induced dermatologic toxicities FACT-EGFRI 18 questionnaire: SWOG S1013

Papulopustular rash is a common class effect of epidermal growth factor receptor inhibitors (EGFRI) that can affect patients’ health-related quality of life and cause disruptions to treatment. SWOG S1013 (NCT0...

Authors: Siu-Fun Wong, Joseph M. Unger, James L. Wade III, Lynne I. Wagner, Mario E. Lacouture, Keisha C. Humphries, Anna Moseley, Kathryn Arnold, Mario R. Velasco Jr, Justin D. Floyd, Benjamin T. Esparaz, Afsaneh Barzi, Heinz-Josef Lenz, Marianna Koczywas, Shaker Dakhil, Gary V. Burton…

A real-world analysis of patient-reported outcomes in patients with migraine by preventive treatment eligibility status in the US and Europe

Migraine has a severe impact on health-related quality of life (HRQoL) affecting physical, emotional, and social aspects of daily living of an individual. Preventive treatment has been demonstrated to improve ...

Authors: Janet H. Ford, Shonda A. Foster, Russell M. Nichols, Antje Tockhorn-Heidenreich, Wenyu Ye, James Jackson and Sarah Cotton

EQ-5D: a plea for accurate nomenclature

Between 1987 and 1990, the EuroQol Group developed a 5-dimension health-related quality of life instrument, originally known as ‘the EuroQol instrument’, which since 1995 has been called the ‘EQ-5D’. For sever...

Authors: Richard Brooks, Kristina S. Boye and Bernhard Slaap

The impact of patient-reported outcome data from clinical trials: perspectives from international stakeholders

Patient-reported outcomes (PROs) are increasingly collected in clinical trials as they provide unique information on the physical, functional and psychological impact of a treatment from the patient’s perspect...

Authors: Samantha Cruz Rivera, Christel McMullan, Laura Jones, Derek Kyte, Anita Slade and Melanie Calvert

Evaluation of the usefulness of EQ-5D as a patient-reported outcome measure using the Paretian classification of health change among patients with chronic heart failure

The aim of this study was to evaluate the usefulness of EQ-5D as a patient-reported outcome measure using different analytical methods. Especially we used the Paretian Classification of Health Change, to see i...

Authors: Åsa Jonsson, Lotti Orwelius, Ulf Dahlstrom and Margareta Kristenson

Randomized comparative study of child and caregiver responses to three software functions added to the Japanese version of the electronic Pediatric Quality of Life Inventory (ePedsQL) questionnaire

Patient-reported outcomes (PROs) refer to any report of the status of a patient’s health condition, health behavior, or experience with healthcare directly from the patient, without interpretation of the patie...

Authors: Iori Sato, Mariko Sakka, Takafumi Soejima, Sachiko Kita and Kiyoko Kamibeppu

Simple change in logistic procedure improves response rate to QOL assessment: a report from the Japan Children’s Cancer Group

Reducing non-completion of quality-of-life assessment in clinical trials is an important challenge in obtaining accurate data and unbiased interpretation of patients’ quality-of-life for each regimen. We evalu...

Authors: Iori Sato, Takafumi Soejima, Yasushi Ishida, Miho Maeda, Katsuyoshi Koh and Kiyoko Kamibeppu

Personalized symptom management: a quality improvement collaborative for implementation of patient reported outcomes (PROs) in ‘real-world’ oncology multisite practices

Little research has focused on implementation of electronic Patient Reported Outcomes (e-PROs) for meaningful use in patient management in ‘real-world’ oncology practices. Our quality improvement collaborative...

Authors: Doris Howell, Zeev Rosberger, Carole Mayer, Rosanna Faria, Marc Hamel, Anne Snider, Denise Bryant Lukosius, Nicole Montgomery, Mindaugas Mozuraitis and Madeline Li

Translation and cultural adaptation of EORTC QLQ-LC 29 into Nepalese language for lung cancer patients in Nepal

The quality of life (QoL) of patients with lung cancer (LC) may be affected by disease-related limitations such as patients’ functioning, the severity of symptoms, financial problems resulting along with the s...

Authors: Sunil Shrestha, Sudip Shrestha, Bhuvan KC, Binaya Sapkota, Anil Khadka, Saval Khanal and Michael Koller

Down syndrome and oral health: mothers’ perception on their children’s oral health and its impact

Individuals with Down syndrome exhibit particular oro-facial characteristics that may increase their risk of oral health problems. However, there is little research on the oral health of children and adults wi...

Authors: AlBandary H. AlJameel, Richard G. Watt, Georgios Tsakos and Blánaid Daly

PROMIS-deaf profile measure: cultural adaptation and psychometric validation in American sign language

Authors: P. Kushalnagar, R. Paludneviciene, M. Kallen, S. Atcherson and D. Cella

Adaptation and validation of the quality of life assessment of the Cambridge pulmonary hypertension outcome review (CAMPHOR) for Brazil

Pulmonary Hypertension (PH) impacts negatively on patients’ health-related quality of life (HRQoL). The Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) was the first PH-specific and validated instrum...

Authors: Ricardo Amorim Corrêa, Monica Corso Pereira, Mariana Ferreira Bizzi, Rafael W. R. de Oliveira, Camila Farnese Rezende, Bruna Cristina Marabita Tavares de Oliveira, Alice Heaney, Stephen P. McKenna and Antonio Ribeiro-Oliveira Jr

Describing the emotional exhaustion, depersonalization, and low personal accomplishment symptoms associated with Maslach Burnout Inventory subscale scores in US physicians: an item response theory analysis

Current US health policy discussions regarding physician burnout have largely been informed by studies employing the Maslach Burnout Inventory (MBI); yet, there is little in the literature focused on interpret...

Authors: Keri J. S. Brady, Pengsheng Ni, R. Christopher Sheldrick, Mickey T. Trockel, Tait D. Shanafelt, Susannah G. Rowe, Jeffrey I. Schneider and Lewis E. Kazis

International Hip Outcome Tool (12-items) as health-related quality-of-life measure in osteoarthritis: validation of Greek version

The 12-item International Hip Outcome Tool (iHOT12) is a patient-reported outcome (PRO) designed to evaluate quality of life. We assessed the psychometric properties of the Greek version (iHOT12-Gr) in hip ost...

Authors: Sophia Stasi, Magdalini Stamou, George Papathanasiou, Paraskevi Frantzeskaki, Emmanouil Kanavas, George Evaggelou-Sossidis, Adamantios Gouskos, Andreas Palantzas, Kyriakos Poursanidis and George A. Macheras

Pattern of recovery and outcomes of patient reported physical function and pain interference after ankle fusion: a retrospective cohort study

Research on outcomes after ankle fusion focuses on basic activities of daily living, fusion rates, and gait parameters. Little has been reported on the patient’s perspective after surgery. The purpose of this ...

Authors: Jessica M. Kohring, Jeffrey R. Houck, Irvin Oh, Adolf S. Flemister, John P. Ketz and Judith F. Baumhauer

Can Patient-Reported Outcomes Measurement Information System® (PROMIS) measures accurately enhance understanding of acceptable symptoms and functioning in primary care?

Value-based healthcare models will require prioritization of the patient’s voice in their own care toward better outcomes. The Patient-Reported Outcomes Measurement Information System® (PROMIS) gives patients ...

Authors: Ryan P. Jacobson, Daniel Kang and Jeff Houck

Use of a modified World Café process to discuss and set priorities for a Community of Practice supporting implementation of ReQoL a new mental health and quality of life Patient Reported Outcome Measure (PROM)

Authors: Elizabeth Taylor Buck, Christine M. Smith, Amanda Lane, Anju Devianee Keetharuth, Tracey Young and Jo Cooke

The long-term course of fatigue following breast cancer diagnosis

Fatigue following breast cancer is a well-known problem, with both high and persistent prevalence. Previous studies suffer from lack of repeated measurements, late recruitment and short periods of follow-up. T...

Authors: Karin Biering, Morten Frydenberg, Helle Pappot and Niels Henrik Hjollund

The Cystic Fibrosis Impact Questionnaire: qualitative development and cognitive evaluation of a new patient-reported outcome instrument to assess the life impacts of cystic fibrosis

Patients with cystic fibrosis (CF) experience significant disease burden, including progressive pulmonary decline and reduced survival. This multicenter qualitative study was conducted to develop a new patient...

Authors: Kelly P. McCarrier, Mariam Hassan, Paul Hodgkins, Ellison Suthoff, Lisa J. McGarry and Mona L. Martin

The responsiveness of goal attainment scaling using just one goal in controlled clinical trials: an exploratory analysis

Goal Attainment Scaling (GAS) is an individualized outcome measure that allows the setting of personalized treatment goals. We compared the responsiveness of GAS when individuals set only one goal instead of t...

Authors: Lisa McGarrigle and Kenneth Rockwood

Advances in Patient Reported Outcomes: Integration and Innovation

Authors:

Reference values for and interpretation of the Singapore Caregiver Quality of Life Scale: a quantile regression approach

The Singapore Caregiver Quality of Life Scale (SCQOLS) was recently developed and validated in two languages - English and Chinese. The total and domain scores are scaled to range from 0 to 100. However, the s...

Authors: Yin Bun Cheung, Shirlyn H. S. Neo, Grace M. Yang, Irene Teo, Geok Ling Lee, Debra L. M. Qu, Audrey R. X. Koh, Julian Thumboo and Hwee Lin Wee

Patients’ perspectives of endometriosis-related fatigue: qualitative interviews

Endometriosis-related fatigue is common and negatively impacts multiple areas of many women’s lives, particularly in day-to-day activities, social activities, physical activities, mood and emotions, relationsh...

Authors: Dana DiBenedetti, Ahmed M. Soliman, Catherine Gupta and Eric S. Surrey

Psychometric evaluation of the Chinese version of the Toronto Hospital Alertness Test

Alertness is an important part of attention which is different from the opposite of sleepiness. This study aimed to translate and assess the measurement properties of the Toronto Hospital Alertness Test (THAT)...

Authors: Sha Li, Daniel Yee Tak Fong, Janet Yuen Ha Wong, Kate Wilkinson, Colin Shapiro, Edmond Pui Hang Choi, Bradley McPherson, Cindy Lo Kuen Lam and Mary Sau Man Ip

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 the neurotrophic keratopathy questionnaire: qualitative research

Neurotrophic keratopathy/keratitis (NK) is a rare disease of the cornea that can lead to anatomical loss of the eye. Little is known about the NK experience from the patients’ perspective. The objectives of th...

Authors: Lindsey T. Murray, Julie McCormack, Ioana Grobeiu, Ingela Wiklund, Miriam Kimel and Floortje Van Nooten

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