Articles

Assessing quality of life in pediatric fibrous dysplasia and McCune Albright syndrome: PEDS-QL and HADS data from the Fibrous Dysplasia Foundation Patient Registry

The International FD/MAS Consortium recently encouraged using the Pediatric Quality of Life Inventory (PEDS-QL) and the Hospital Anxiety and Depression scales (HADS) in clinical care. This study examines score...

Authors: Amanda Konradi

Psychometric properties of FACIT-Fatigue in systemic lupus erythematosus: a pooled analysis of three phase 3 randomised, double-blind, parallel-group controlled studies (BLISS-SC, BLISS-52, BLISS-76)

Fatigue is a key symptom in patients with systemic lupus erythematosus (SLE), and regulatory bodies recommend its assessment in clinical trials of SLE therapies.

Authors: Regina Rendas-Baum, Nishtha Baranwal, Ashish V. Joshi, Josephine Park and Mark Kosinski

Cultural and linguistic adaptation of the multi-dimensional OXCAP-MH for outcome measurement of mental health among people living with HIV/AIDS in Uganda: the Luganda version

It is rare to find HIV/AIDS care providers in sub-Saharan Africa routinely providing mental health services, yet 8–30% of the people living with HIV have depression. In an ongoing trial to assess integration o...

Authors: Kenneth R. Katumba, Yoko V. Laurence, Patrick Tenywa, Joshua Ssebunnya, Agata Laszewska, Judit Simon, Anna Vassall, Eugene Kinyanda and Giulia Greco

Patient-centered outcomes used in pediatric focused manual therapies research studies: a secondary data analysis of a systematic review

Patient-reported outcome measurements (PROM) are instruments that seek a patient’s health or functional status. Inclusion of standardized PROMs in research studies and clinical practice provides a more compreh...

Authors: Beth Carleo, Kristian Anderson, Carol Parnell Prevost and Katherine A. Pohlman

What matters to children with lower limb deformities: an international qualitative study guiding the development of a new patient-reported outcome measure

Lower limb deformities include conditions such as leg length discrepancy, lower limb deficiency and associated angular and rotational deformities of the hips, knees, ankles and feet. Children with lower limb d...

Authors: Harpreet Chhina, Anne F. Klassen, Jacek A. Kopec, John Oliffe, Christopher Iobst, Noemi Dahan-Oliel, Aditya Aggarwal, Tim Nunn and Anthony P. Cooper

Consumer Assessment of Healthcare Providers and Systems (CAHPS®) survey of experiences with ambulatory healthcare for Asians and non-Hispanic Whites in the United States

Differences in experiences of care reported by Asian Americans (Asians) compared to non-Hispanic Whites (Whites) may be due to lack of measurement invariance.

Authors: Mohir Ahmedov, Nadereh Pourat, Honghu Liu and Ron D. Hays

Development of a Patient Reported Measure of Experimental Transplants with HIV and Ethics in the United States (PROMETHEUS)

Transplantation of HIV-positive (HIV+) donor organs for HIV+ recipients (HIV D+/R+) is now being performed as research in the United States, but raises ethical concerns. While patient-reported outcome measures...

Authors: Shanti Seaman, Diane Brown, Ann Eno, Sile Yu, Allan B. Massie, Aaron A. R. Tobian, Christine M. Durand, Dorry L. Segev, Albert W. Wu and Jeremy Sugarman

Content validity and psychometric evaluation of the Functional Assessment of Chronic Illness Therapy-Fatigue scale in patients with chronic lymphocytic leukemia

Fatigue is a prominent symptom in individuals with chronic lymphocytic leukemia (CLL). This work evaluates the content validity and psychometric properties of the Functional Assessment of Chronic Illness Thera...

Authors: Daniel Eek, Cristina Ivanescu, Laura Corredoira, Oren Meyers and David Cella

Discrete choice experiments or best-worst scaling? A qualitative study to determine the suitability of preference elicitation tasks in research with children and young people

Ordinal tasks are increasingly used to explore preferences for health states. This study aimed to determine the suitability of two ordinal preference elicitation tasks (discrete choice experiments (DCE) and be...

Authors: Helen J. Rogers, Zoe Marshman, Helen Rodd and Donna Rowen

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

An amendment to this paper has been published and can be accessed via the original article.

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

Experiences of patients who developed oral mucositis during solid neoplasms treatment: a Ugandan qualitative study

Research on the management of complications of chemotherapy is important in facilitating the growing approaches to individualized patient management. Hence the need to document patient’s perspectives about che...

Authors: Adriane Kamulegeya, Damalie Nakanjako, Jackson Orem and Harriet Mayanja-Kizza

Does scrolling affect measurement equivalence of electronic patient-reported outcome measures (ePROM)? Results of a quantitative equivalence study

Scrolling is a perceived barrier in the use of bring your own device (BYOD) to capture electronic patient reported outcomes (ePROs). This study explored the impact of scrolling on the measurement equivalence o...

Authors: Saeid Shahraz, Tan P. Pham, Marc Gibson, Marie De La Cruz, Munther Baara, Sachin Karnik, Christopher Dell, Sheryl Pease, Suyash Nigam, Joseph C. Cappelleri, Craig Lipset, Patrick Zornow, Jeff Lee and Bill Byrom

Adaptation of the barriers to help-seeking for trauma (BHS-TR) scale: a cross-cultural cognitive interview study with female intimate partner violence survivors in Iceland

Even though traumatization is linked to substantially reduced health-related quality of life, help-seeking and service utilization among trauma survivors are very low. To date, there has not been available in ...

Authors: Karen Birna Thorvaldsdottir, Sigridur Halldorsdottir, Rhonda M. Johnson, Sigrun Sigurdardottir and Denise Saint Arnault

Translation and psychometric evaluation of the Swedish versions of the Nuss Questionnaire modified for Adults and the Single Step Questionnaire

Pectus excavatum (PE) is the most common congenital chest wall deformity. Most individuals with PE suffer from psychosocial problems, with low self-esteem and poor body image. Correctional surgery for PE is av...

Authors: Louise Norlander, Jan Karlsson, Agneta Anderzén-Carlsson, Mårten Vidlund, Mats Dreifaldt, Jesper Andreasson and Ann-Sofie Sundqvist

Correction to: Establishing a common metric for patient-reported outcomes in cancer patients: linking patient reported outcomes measurement information system (PROMIS), numerical rating scale, and patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE)

An amendment to this paper has been published and can be accessed via the original article.

Authors: Minji K. Lee, Benjamin D. Schalet, David Cella, Kathleen J. Yost, Amylou C. Dueck, Paul J. Novotny and Jeff A. Sloan

Psychometric properties of a condition-specific PROM for the psychosocial consequences of Labelling hypertension by using Rasch analysis

A previous qualitative assessment of the psychosocial consequences of labelling hypertension describes the diagnosis of hypertension as a labelling event with potential unintended negative long-term psychosoci...

Authors: János Valery Gyuricza, Karl Bang Christensen, Ana Flávia Pires Lucas d’Oliveira and John Brodersen

A qualitative exploration of the patient experience of erosive and non-erosive hand osteoarthritis

Many patients with hand osteoarthritis (HOA) experience reduced health-related quality of life. This study sought to better understand the disease and treatment experience of individuals with HOA, explore any ...

Authors: Charlotte Panter, Pamela Berry, Deven Chauhan, Sofia Fernandes, Sally Gatsi, Josephine Park, Jane R. Wells and Rob Arbuckle

Reference values for the short forms of the Singapore Caregiver Quality of Life Scale

The 15- and 10-item short forms of the Singapore Caregiver Quality of Life Scale (SCQOLS-15 and SCQOLS-10) were recently developed as a quick assessment of caregiver quality of life. Reference values describin...

Authors: Chun Fan Lee, Hwee Lin Wee, Irene Teo, Geok Ling Lee, Julian Thumboo, Yin Bun Cheung and Shirlyn H. S. Neo

Epilepsy and quality of life in Iranian epileptic patients

Epilepsy is one of the most common neurological disorders with physical, emotional, and social consequences. Previous studies indicate that epilepsy symptoms can highly affect the epileptic patients’ satisfact...

Authors: Bahareh Honari, Seyed Mehran Homam, Maryam Nabipour, Zahra Mostafavian, Arezou Farajpour and Nyusha Sahbaie

Translation and cultural adaptation of IPOS (integrated palliative care outcome scale) in Estonia

Patient Reported Outcome Measures (PROMs) are questionnaires that could be used in palliative care (PC) to evaluate patient well-being and monitor their care. PROMs enable a focus on what is important to patie...

Authors: Merli Laissaar, Riina Hallik, Pille Sillaste, Ulvi Ragun, Mari-Leen Pärn and Kaiu Suija

Activity competence among infants and toddlers with developmental disabilities: Rasch analysis of the Infant Toddler Activity Card Sort (ITACS)

Development is rapid in the first years of life. Developmental delays appearing during this critical period have the potential to persist throughout the child’s life. Available standardized assessments for thi...

Authors: Catherine R. Hoyt, Allison J. L’Hotta, Anna H. Bauer, Chih-Hung Chang, Taniya E. Varughese, Regina A. Abel and Allison A. King

The German RECAP questionnaire: linguistic validation and cognitive debriefing in German adults with self-reported atopic eczema and parents of affected children

Recap of atopic eczema (RECAP) is a patient-reported outcome measure (PROM) assessing eczema control. Long-term control of eczema is one of the four core outcome domains for atopic eczema trials. This instrume...

Authors: Michaela Gabes, Christina Tischer, Anne Herrmann, Laura Howells and Christian Apfelbacher

Estimating health state utilities in hemophagocytic lymphohistiocytosis

Hemophagocyti.c lymphohistiocytosis (HLH) is a rare and severe disorder characterized by abnormal activation of the immune system. Primary HLH causes prolonged fever, spleen and liver enlargement, and organ dy...

Authors: Beenish Nafees, Andrew Lloyd and Sarah Dewilde

State of the Journal of Patient-Reported Outcomes

Authors: Ron D. Hays and Chih-Hung Chang

Development and content validation of the Satisfaction and Experience Questionnaire for Granulocyte Colony-Stimulating Factor (SEQ-G-CSF)

Several options for granulocyte colony-stimulating factor (G-CSF) prophylaxis of chemotherapy-induced febrile neutropenia are available to patients worldwide. We have developed a novel patient-reported outcome...

Authors: Aylin Yucel, Anne Skalicky, Olabimpe Ruth Eseyin, Emre Yucel, Rajesh Belani and Mark Bensink

Establishing content-validity of a disease-specific health-related quality of life instrument for patients with chronic hypersensitivity pneumonitis

Chronic Hypersensitivity Pneumonitis (CHP) is caused by an immune mediated response in the lung tissue after exposure to an inhaled environmental antigenic stimulant. We previously documented the ways in which...

Authors: Kerri I. Aronson, Maha Ali, Evgeniya Reshetynak, Robert J. Kaner, Fernando J. Martinez, Monika M. Safford and Laura C. Pinheiro

Patient-led use of patient-reported outcome measure in self-Management of a Rotator Cuff Injury

The patient is the person who experiences both the processes and the outcomes of care. Information held by the patient is vital for clinical and self-management, improving health outcomes, delivery of care, or...

Authors: Maria J. Santana and Darrell J. Tomkins

Vision-related quality of life in adults with severe peripheral vision loss: a qualitative interview study

Existing patient-reported outcome (PRO) measures may not be relevant to the full range of functional and vision-related quality of life (VR-QOL) concerns of individuals with vision impairment due to severe per...

Authors: Ryan Lange, Abigail Kumagai, Sara Weiss, Katherine B. Zaffke, Sherry Day, Donna Wicker, Ashley Howson, K. Thiran Jayasundera, Lori Smolinski, Christina Hedlich, Paul P. Lee, Robert W. Massof, Joan A. Stelmack, Noelle E. Carlozzi and Joshua R. Ehrlich

The impact of moderate and severe asthma exacerbations on quality of life: a post hoc analysis of randomised controlled trial data

This paper reports the duration of moderate and severe exacerbations in patients with house dust mite induced allergic asthma and the impact on patients’ quality of life.

Authors: Andrew Briggs, Shuaib Nasser, Eva Hammerby, Sarah Buchs and J. Christian Virchow

Development of a symptom menu to facilitate Goal Attainment Scaling in adults with Down syndrome-associated Alzheimer’s disease: a qualitative study to identify meaningful symptoms

As life expectancy of people with Down syndrome (DS) increases, so does the risk of Alzheimer’s disease (AD). Identifying symptoms and tracking disease progression is especially challenging whenever levels of ...

Authors: Kari Knox, Justin Stanley, James A. Hendrix, Hampus Hillerstrom, Taylor Dunn, Jillian Achenbach, Brian A. Chicoine, Florence Lai, Ira Lott, Sanja Stanojevic, Susan E. Howlett and Kenneth Rockwood

Assessing the acceptability, reliability, and validity of the EORTC Quality of Life Questionnaire (QLQ-C30) in Kenyan cancer patients: a cross-sectional study

In oncology practice, eliciting the patient’s perspective on their quality of life (QOL) adds important information and value to their treatment and care. The European Organization for Research and Treatment o...

Authors: Jasmine Davda, Hillary Kibet, Emmah Achieng, Lawrence Atundo and Truphena Komen

Patient-reported burden of hereditary transthyretin amyloidosis on functioning and well-being

Hereditary transthyretin (hATTR) amyloidosis is a rare, systemic, progressive, and life-threatening disease in which transthyretin proteins misfold and aggregate as insoluble amyloid deposits, disrupting nervo...

Authors: Andrew Lovley, Kimberly Raymond, Spencer D. Guthrie, Michael Pollock, Vaishali Sanchorawala and Michelle K. White

Impact of comorbidities and treatment burden on general well-being among women’s cancer survivors

Gains in cancer detection and treatment have meant that more patients are now living with both cancer and other chronic health conditions, which may become burdensome. We used the Patient Experience with Treat...

Authors: R. T. Anderson, D. T. Eton, F. T. Camacho, E. M. Kennedy, C. M. Brenin, P. B. DeGuzman, K. F. Carter, T. Guterbock, K. J. Ruddy and W. F. Cohn

Translation and content validity of the Dutch Impact of Vision Impairment questionnaire assessed by Three-Step Test-Interviewing

Patients suffering from exsudative retinal diseases may experience severe central vision loss and this might have impact on their daily activities and quality of life. To measure the disabilities these patient...

Authors: T. P. Rausch – Koster, A. J. van der Ham, C. B. Terwee, F. D. Verbraak, G. H. M. B. van Rens and R. M. A. van Nispen

Correction to: Content validity of a sleep numerical rating scale and a sleep diary in adults and adolescents with moderate-to-severe atopic dermatitis

An amendment to this paper has been published and can be accessed via the original article.

Authors: Carla Dias-Barbosa, Rodolfo Matos, Margaret Vernon, Colleen E. Carney, Andrew Krystal and Jorge Puelles

Establishing a common metric for patient-reported outcomes in cancer patients: linking patient reported outcomes measurement information system (PROMIS), numerical rating scale, and patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE)

Researchers and clinicians studying symptoms experienced by people with cancer must choose from various scales. It would be useful to know how the scores on one measure translate to another.

Authors: Minji K. Lee, Benjamin D. Schalet, David Cella, Kathleen J. Yost, Amylou C. Dueck, Paul J. Novotny and Jeff A. Sloan

Selection and validation of a classification system for a child-centred preference-based measure of oral health-related quality of life specific to dental caries

Caries Impacts and Experiences Questionnaire for Children (CARIES-QC) is a child-centred caries-specific quality of life measure. This study aimed to select, and validate with children, a classification system...

Authors: Helen J. Rogers, Fiona Gilchrist, Zoe Marshman, Helen D. Rodd and Donna Rowen

Validity and analysis of the Diabetes Injection Device Preference Questionnaire (DID-PQ)

The Diabetes Injection Device Preference Questionnaire (DID-PQ) was designed to assess patient preference between two non-insulin injection devices. In a recent crossover study, people with type 2 diabetes (T2...

Authors: Kristina S. Boye, Louis S. Matza, Brooke M. Currie and Karin S. Coyne

Development and internal validation of a predictive risk model for anxiety after completion of treatment for early stage breast cancer

To develop a predictive risk model (PRM) for patient-reported anxiety after treatment completion for early stage breast cancer suitable for use in practice and underpinned by advances in data science and risk ...

Authors: Jenny Harris, Edward Purssell, Victoria Cornelius, Emma Ream, Anne Jones and Jo Armes

Patient experiences with hypertrophic cardiomyopathy: a conceptual model of symptoms and impacts on quality of life

Hypertrophic cardiomyopathy (HCM) is a primary myocardial disorder defined by left ventricular hypertrophy that cannot be explained by another cardiac or systemic disease. There is a general lack of knowledge ...

Authors: Erica Zaiser, Amy J. Sehnert, Ashley Duenas, Sara Saberi, Ella Brookes and Matthew Reaney

Selecting, implementing and evaluating patient-reported outcome measures for routine clinical use in cancer: the Cancer Care Ontario approach

The use of Patient-Reported Outcome Measures (PROMs) in routine clinical care can help ensure symptoms are identified, acknowledged and addressed. In 2007, the provincial cancer agency, Cancer Care Ontario, be...

Authors: Nicole Montgomery, Doris Howell, Zahra Ismail, Susan J. Bartlett, Michael Brundage, Denise Bryant-Lukosius, Monika Krzyzanowska, Lesley Moody, Claire Snyder and Lisa Barbera

Content validity of a sleep numerical rating scale and a sleep diary in adults and adolescents with moderate-to-severe atopic dermatitis

The intense itching associated with atopic dermatitis (AD) often causes patients to experience severe sleep disturbance. Here, we describe the results of a two-phase concept elicitation and cognitive interview...

Authors: Carla Dias-Barbosa, Rodolfo Matos, Margaret Vernon, Colleen E. Carney, Andrew Krystal and Jorge Puelles

Psychometric evaluation of the DAILY EATS questionnaire in individuals living with obesity

Physiological and behavioral factors including hunger, satiety, food intake, and cravings are health determinants contributing to obesity. Patient-reported outcome (PRO) measures focused on eating-related fact...

Authors: John Fastenau, Heather Rozjabek, Shanshan Qin, Lori McLeod, Lauren Nelson, Jia Ma and Nimanee Harris

PROMIS® Health Organization (PHO) 2020 Conference Toward Patient-Centered Care: PROMIS Implementations and Advances Abstracts

Authors:

Ecological momentary assessment versus retrospective assessment for measuring change in health-related quality of life following cardiac intervention

Measuring change in health-related quality-of-life (HRQoL) is important to assess the impact of disease and/or treatment. Ecological momentary assessment (EMA) comprises the repeated assessment of momentary HR...

Authors: Tom H. Oreel, Philippe Delespaul, Iris D. Hartog, José P. S. Henriques, Justine E. Netjes, Alexander B. A. Vonk, Jorrit Lemkes, Michael Scherer-Rath, Hanneke W. M. van Laarhoven, Mirjam A. G. Sprangers and Pythia T. Nieuwkerk

Validation of a menstrual pictogram and a daily bleeding diary for assessment of uterine fibroid treatment efficacy in clinical studies

To evaluate the psychometric and measurement properties of two patient-reported outcome instruments, the menstrual pictogram superabsorbent polymer-containing version 3 (MP SAP-c v3) and Uterine Fibroid Daily ...

Authors: Claudia Haberland, Anna Filonenko, Christian Seitz, Matthias Börner, Christoph Gerlinger, Helen Doll and Dorothea Wessiepe

The needs of key-stakeholders for evaluating client’s experienced quality of home care: a qualitative approach

To optimize home care, it is essential to determine how care recipients experience quality of care. Traditionally, quality of care is measured with normative quality indicators such as safety, efficiency, or p...

Authors: Roy Haex, Theresa Thoma-Lürken, Sandra Zwakhalen and Anna Beurskens

Symptom burden and health-related quality of life impacts of smoldering multiple myeloma: the patient perspective

Smoldering multiple myeloma (SMM) is an early form of multiple myeloma (MM). SMM is typically considered asymptomatic, and research on how it affects health-related quality of life (HRQoL) is limited. This stu...

Authors: Milenka Jean-Baptiste, Katharine S. Gries, William R. Lenderking and John Fastenau

Validity and reliability testing of the Toddler and Infant (TANDI) Health Related Quality of Life instrument for very young children

Despite the high burden of disease in younger children there are few tools specifically designed to estimate Health Related Quality of Life (HRQoL) in children younger than 3 years of age. A previous paper des...

Authors: Janine Verstraete, Lebogang Ramma and Jennifer Jelsma

Quality of life among patients seeking treatment for substance use disorder, as measured with the EQ-5D-3L

There is a need to assess the quality of treatment for Substance Use Disorder (SUD), and document SUD patients’ health-related quality of life (HRQoL). The study aims to describe Norwegian SUD patients’ HRQoL ...

Authors: Kim Rand, Espen Ajo Arnevik and Espen Walderhaug