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  1. Contrary to common usage in the health sciences, the term “valid” refers not to the properties of a measurement instrument but to the extent to which data-derived inferences are appropriate, meaningful, and us...

    Authors: Melanie Hawkins, Gerald R. Elsworth, Sandra Nolte and Richard H. Osborne

    Citation: Journal of Patient-Reported Outcomes 2021 5:64

    Content type: Research

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  2. Sickle Cell Disease (SCD) is a genetic progressive vascular disease that impacts patients overall health and quality of life. Sickle-cell pain crises (SCPCs) are a hallmark clinical presentation of SCD and hav...

    Authors: Michelle K. White, Cory Saucier, Miranda Bailey, Denise D’Alessio, April Foster, Danielle St. Pierre and Kimberly Raymond

    Citation: Journal of Patient-Reported Outcomes 2021 5:63

    Content type: Research

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  3. There has been a growing emphasis on health-related quality of life (HRQoL) as an important outcome in rare disease drug development, although its assessment may be useful outside the drug development context,...

    Authors: William R. Lenderking, Milena Anatchkova, Robin Pokrzywinski, Anne Skalicky, Mona L. Martin and Heather Gelhorn

    Citation: Journal of Patient-Reported Outcomes 2021 5:61

    Content type: Commentary

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  4. Physical functioning and fatigue are key patient concerns in myelodysplastic syndromes (MDS), chronic myelomonocytic leukemia (CMML), and acute myeloid leukemia (AML). The objective of this research was to gen...

    Authors: Antoine Regnault, Farrah Pompilus, Anna Ciesluk, Flora Mazerolle, Rafael Bejar, Robert J. Fram, Douglas V. Faller, Patrick Marquis and Jill A. Bell

    Citation: Journal of Patient-Reported Outcomes 2021 5:60

    Content type: Research

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  5. The Satisfaction with Life Scale (SWLS) is a widely used measure of subjective well-being. Recent evidence indicates the fifth item of the scale reduces the reliability of the scale and is inappropriate for us...

    Authors: Alyssa M. Bamer, Kara McMullen, Anne Deutsch, Mitch Sevigny, Tracy Mroz, Shelly A. Wiechman, Jeffrey C. Schneider and Dagmar Amtmann

    Citation: Journal of Patient-Reported Outcomes 2021 5:59

    Content type: Short report

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  6. Effective patient-physician communication can improve patient understanding, agreement on treatment and adherence. This may, in turn, impact on clinical outcomes and patient quality of life (QoL). One way to i...

    Authors: Åsa Kettis, Hanna Fagerlind, Jan-Erik Frödin, Bengt Glimelius and Lena Ring

    Citation: Journal of Patient-Reported Outcomes 2021 5:58

    Content type: Research

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  7. The Rapkin and Schwartz appraisal theory and measure provided a path toward documenting response-shift effects and describing individual differences in ways of thinking about quality of life (QOL) that disting...

    Authors: Carolyn E. Schwartz, Roland B. Stark and Bruce D. Rapkin

    Citation: Journal of Patient-Reported Outcomes 2021 5:57

    Content type: Research

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  8. The Singapore Caregiver Quality of Life Scale – Dementia (SCQOLS-D), developed based on the Singapore Caregiver Quality of Life Scale (SCQOLS), comprises 5 domains and 63 items. It has been shown to be a valid...

    Authors: Chun Fan Lee, Dennis C. C. Seow, Irene Teo, Shirlyn H. S. Neo, Grace M. Yang, Geok Ling Lee, Wee Shiong Lim, Allyn Hum and Yin Bun Cheung

    Citation: Journal of Patient-Reported Outcomes 2021 5:56

    Content type: Research

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  9. To reduce the burden of completing Patient-Reported Outcome Measures (PROMs), PROMIS® Computerized Adaptive Tests (CATs) are being implemented in pediatric clinical practice. We aimed to develop recommendation...

    Authors: Maud M. van Muilekom, Michiel A. J. Luijten, Hedy A. van Oers, Caroline B. Terwee, Raphaële R. L. van Litsenburg, Leo D. Roorda, Martha A. Grootenhuis and Lotte Haverman

    Citation: Journal of Patient-Reported Outcomes 2021 5:55

    Content type: Research

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  10. Graves’ disease is the most common cause of hyperthyroidism. It results in accelerated tissue metabolism with multi-organ involvement ranging from cardiovascular to neuropsychological function. This results in...

    Authors: Huiling Liew, Torquil Watt, Luo Nan, Alvin W. K. Tan, Yiong Huak Chan, Daniel Ek Kwang Chew and Rinkoo Dalan

    Citation: Journal of Patient-Reported Outcomes 2021 5:54

    Content type: Research

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  11. Research has indicated proxies overestimate symptoms on patients’ behalves, however it is unclear whether patients and proxies agree on meaningful change across domains over time. The objective of this study i...

    Authors: Brittany R. Lapin, Nicolas R. Thompson, Andrew Schuster and Irene L. Katzan

    Citation: Journal of Patient-Reported Outcomes 2021 5:53

    Content type: Short report

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  12. Patients with rheumatoid arthritis (RA) commonly experience pain despite the availability of disease-modifying treatments. Sleep disturbances are frequently reported in RA, with pain often a contributing facto...

    Authors: Brandon Becker, Kimberly Raymond, Carol Hawkes, April Mitchell Foster, Andrew Lovley, Cory Saucier, Avery A. Rizio, Jakob Bue Bjorner and Mark Kosinski

    Citation: Journal of Patient-Reported Outcomes 2021 5:52

    Content type: Research

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  13. Chronic thromboembolic pulmonary hypertension (CTEPH) is a rare form of pulmonary hypertension caused by blood clots and scar tissue in the blood vessels of the lungs. Health-related quality of life is often s...

    Authors: Brooke Currie, Evan Davies, Amélie Beaudet, Larissa Stassek and Leah Kleinman

    Citation: Journal of Patient-Reported Outcomes 2021 5:51

    Content type: Research

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  14. The objectives were: 1) to explore the discordance between the Patient Global Health Assessment (PtGA) scores, the Physician Global Health Assessment (PhGA) scores, and Pain scores; and 2) to explore whether t...

    Authors: Rebecca Trachtman, Rula Issa, Stephanie Pan, Karen M. Wilson, Daniel J. Lovell and Karen B. Onel

    Citation: Journal of Patient-Reported Outcomes 2021 5:50

    Content type: Short report

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  15. Crohn’s disease (CD) is a chronic inflammatory condition of the gastrointestinal tract that affects people across the age spectrum but often starts in childhood or early adulthood. Despite this, almost all pub...

    Authors: Louise Newton, Laure Delbecque, Ufuk Coşkun, Tara Symonds, Jennifer Clegg and Theresa Hunter

    Citation: Journal of Patient-Reported Outcomes 2021 5:49

    Content type: Research

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  16. The COVID-19 pandemic has led to a deep reorganization of hospital services including inflammatory bowel disease (IBD) units. In this situation, conversion of in-person routine follow-up visits into phone cons...

    Authors: Sergio Pinto, Erica Loddo, Salvatore Paba, Agnese Favale, Fabio Chicco, Sara Onali, Paolo Usai and Massimo Claudio Fantini

    Citation: Journal of Patient-Reported Outcomes 2021 5:48

    Content type: Research

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  17. A new technology in cancer treatment, the MR-linac, provides online magnetic resonance-guided radiotherapy (MRgRT) that combines real-time visualization of the tumor and surrounding tissue with radiation thera...

    Authors: P. K. Møller, H. Pappot, U. Bernchou, T. Schytte and K. B. Dieperink

    Citation: Journal of Patient-Reported Outcomes 2021 5:47

    Content type: Research

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    The Correction to this article has been published in Journal of Patient-Reported Outcomes 2021 5:62

  18. The purpose of this study was to partner with stakeholders to identify gaps in care for persons living with dementia and their family caregivers and from this list, identify priorities for dementia care research.

    Authors: Neela K. Patel, Sara S. Masoud, Kylie Meyer, Angelica V. Davila, Sheran Rivette, Ashlie A. Glassner, Deborah James and Carole L. White

    Citation: Journal of Patient-Reported Outcomes 2021 5:46

    Content type: Research

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  19. This study was conducted to evaluate content validity of the IntraVenous and SubCutaneous Treatment Administration Satisfaction Questionnaires (TASQ-IV and TASQ-SC), for use in a clinical trial population of p...

    Authors: Helen Doll, Ufuk Coşkun, Chris Hartford and Ioannis Tomazos

    Citation: Journal of Patient-Reported Outcomes 2021 5:45

    Content type: Review

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  20. Head and neck cancers (HNC) are one of the most traumatic forms of cancer because they affect essential aspects of life such as speech, swallowing, eating and disfigurement. HNCs are common in India, with over...

    Authors: Chindhu Shunmugasundaram, Haryana M. Dhillon, Phyllis N. Butow, Puma Sundaresan, Mahati Chittem, Niveditha Akula, Surendran Veeraiah and Claudia Rutherford

    Citation: Journal of Patient-Reported Outcomes 2021 5:44

    Content type: Research

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  21. Disparities in US physician burnout rates across age, gender, and specialty groups as measured by the Maslach Burnout Inventory-Human Services Survey for Medical Personnel (MBI) are well documented. We evaluat...

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

    Citation: Journal of Patient-Reported Outcomes 2021 5:43

    Content type: Research

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  22. Citation: Journal of Patient-Reported Outcomes 2021 5:42

    Content type: Correction

    Published on:

    The original article was published in Journal of Patient-Reported Outcomes 2021 5:37

  23. While the Patient-Reported Outcomes Measurement Information System (PROMIS) is mainly designed for computer adaptive testing, its static short forms (SF) are used when a paper-pencil format is preferred or ite...

    Authors: Anika Stephan, Vincent A. Stadelmann, Michael Leunig and Franco M. Impellizzeri

    Citation: Journal of Patient-Reported Outcomes 2021 5:41

    Content type: Short report

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  24. The 12-item Medical Outcomes Study Sleep Scale (MOS Sleep Scale) has been used to capture patient-reported sleep problems in hundreds of studies. A revised version of the MOS Sleep Scale (MOS Sleep-R) was deve...

    Authors: Aaron Yarlas, Michelle K. White, Danielle G. St. Pierre and Jakob B. Bjorner

    Citation: Journal of Patient-Reported Outcomes 2021 5:40

    Content type: Research

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  25. To add context to the impact of medical conditions, it is important to interpret and compare health outcomes across studies and populations. We aimed to determine Dutch reference values for the Patient-Reporte...

    Authors: Ellen B. M. Elsman, Leo D. Roorda, Martine H. P. Crins, Maarten Boers and Caroline B. Terwee

    Citation: Journal of Patient-Reported Outcomes 2021 5:38

    Content type: Research

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  26. We evaluated the impact of menopause-associated vasomotor symptoms (VMS) on sleep. We also sought to establish the content validity of Patient-Reported Outcomes Measurement Information System (PROMIS) short fo...

    Authors: Marci English, Boyka Stoykova, Christina Slota, Lynda Doward, Emad Siddiqui, Rebecca Crawford and Dana DiBenedetti

    Citation: Journal of Patient-Reported Outcomes 2021 5:37

    Content type: Research

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    The Correction to this article has been published in Journal of Patient-Reported Outcomes 2021 5:42

  27. Patient-reported outcomes (PROs) can provide valuable information about drug benefit-risk tradeoffs from the patient perspective and are particularly important to patients with breast cancer due to its symptom...

    Authors: Kyungwan Hong, Kayleigh R. Majercak, Ester Villalonga-Olives and Eleanor M. Perfetto

    Citation: Journal of Patient-Reported Outcomes 2021 5:36

    Content type: Research

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  28. Post-stroke fatigue (PSF) is commonly reported and described as disabling by patients recovering from stroke. However, a major challenge is how to accurately diagnose and assess PSF. Therefore, the aim of this...

    Authors: Ingrid Johansen Skogestad, Marit Kirkevold, Petra Larsson, Christine Råheim Borge, Bent Indredavik, Caryl L. Gay and Anners Lerdal

    Citation: Journal of Patient-Reported Outcomes 2021 5:35

    Content type: Research

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  29. 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

    Citation: Journal of Patient-Reported Outcomes 2021 5:34

    Content type: Research

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  30. 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

    Citation: Journal of Patient-Reported Outcomes 2021 5:33

    Content type: Research

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  31. 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

    Citation: Journal of Patient-Reported Outcomes 2021 5:32

    Content type: Research

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  32. 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

    Citation: Journal of Patient-Reported Outcomes 2021 5:31

    Content type: Short report

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  33. 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

    Citation: Journal of Patient-Reported Outcomes 2021 5:30

    Content type: Research

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  34. 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

    Citation: Journal of Patient-Reported Outcomes 2021 5:29

    Content type: Research

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  35. 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

    Citation: Journal of Patient-Reported Outcomes 2021 5:28

    Content type: Research

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  36. 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

    Citation: Journal of Patient-Reported Outcomes 2021 5:27

    Content type: Research

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  37. 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

    Citation: Journal of Patient-Reported Outcomes 2021 5:26

    Content type: Research

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  38. 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

    Citation: Journal of Patient-Reported Outcomes 2021 5:25

    Content type: Correction

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    The original article was published in Journal of Patient-Reported Outcomes 2018 2:29

  39. 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

    Citation: Journal of Patient-Reported Outcomes 2021 5:24

    Content type: Research

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  40. 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

    Citation: Journal of Patient-Reported Outcomes 2021 5:23

    Content type: Research

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  41. 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

    Citation: Journal of Patient-Reported Outcomes 2021 5:22

    Content type: Research

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  42. 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

    Citation: Journal of Patient-Reported Outcomes 2021 5:21

    Content type: Research

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  43. 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

    Citation: Journal of Patient-Reported Outcomes 2021 5:20

    Content type: Correction

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    The original article was published in Journal of Patient-Reported Outcomes 2020 4:106

  44. 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

    Citation: Journal of Patient-Reported Outcomes 2021 5:19

    Content type: Research

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  45. 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

    Citation: Journal of Patient-Reported Outcomes 2021 5:18

    Content type: Research

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  46. 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

    Citation: Journal of Patient-Reported Outcomes 2021 5:17

    Content type: Research

    Published on:

  47. 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

    Citation: Journal of Patient-Reported Outcomes 2021 5:16

    Content type: Research

    Published on:

  48. 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

    Citation: Journal of Patient-Reported Outcomes 2021 5:15

    Content type: Research

    Published on:

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