Årg. 21 Nr. 39 (2023): Patient Rapporterede Oplysninger
Originalartikler

Exploring, describing, and mapping the constitutive elements of patient-reported outcomes (PROs) used in clinical practice

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  • Jeppe Eriksen,
  • Ann Bygholm,
  • Pernille Bertelsen
Ann Bygholm
Bio
Pernille Bertelsen
Bio
DOI: https://doi.org/10.7146/tfss.v21i39.133818

Publiceret 2023-12-07

Nøgleord

  • Engelsk

Citation/Eksport

Eriksen, J., Bygholm, A., & Bertelsen, P. (2023). Exploring, describing, and mapping the constitutive elements of patient-reported outcomes (PROs) used in clinical practice. Tidsskrift for Forskning I Sygdom Og Samfund, 21(39). https://doi.org/10.7146/tfss.v21i39.133818
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Resumé

Abstract

Background: The functionality and purpose of patient-reported outcomes (PROs) have evolved as a result of their digitalisation and extended application in clinical practice. The diffusion of PROs on various organisational levels in different sectors and disease areas has further shaped their usage and construction. Thus, this paper identifies the main elements constituting a PRO in the context of clinical practice. The aim is to create a concept map (PRO Elements) grounded in the extant literature, translating, combining, and mediating different interpretations of PRO among stakeholders, to enhance users’ understanding and use of PROs with a particular focus on patient participation.

Methods: The study is based on a systematic document analysis—a sub-study of an extensive scoping review (PubMed, Embase, CINAHL, Scopus) of PROs and patient participation in clinical practice.

Results: The mapping of PRO reveals that, in clinical practice, a combination of eight main elements constitutes a PRO— validated questionnaire(s), developers, content, measures, mediation, respondents, data, and outcomes – forming the concept map called PRO Elements.

Conclusion: The article provides an interdisciplinary mapping, presentation, and discussion of PROs’ constitutive elements, with an emphasis on patient participation. The holistic conceptualisation map illustrates various types of PROs that may prompt stakeholders to engage in discourse on the development, implementation, and evaluation of PROs to create more coherent and beneficial applications.

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Referencer

  1. Videnscenter for Brugerinddragelse i Sundhedsvæsenet (VibIS). Program PRO. 2016.
  2. https://danskepatienter.dk/temaer-projekter/projekter/program-pro, Accessed the 13
  3. March 2023
  4. PRO-secretariat. https://pro-danmark.dk/da/pro-english, Accessed the 13 March 2023
  5. Eriksen J, Bertelsen P, Bygholm AKM. The Digital transformation of Patient-Reported Outcomes’
  6. (PROs) Functionality within Healthcare. In: Pape-Haugaard LB, Lovis C, Madsen
  7. IC, Weber P, Nielsen PH, Scott P, Editors. Digital Personalized Health and Medicine:
  8. Proceedings of MIE 2020. Amsterdam: IOS Press.2020. doi:10.3233/SHTI200322.
  9. Eriksen J, Bygholm AKM, Bertelsen PS. The Purpose of Patient-Reported Outcome (PRO)
  10. Post Its Digitalization and Integration into Clinical Practice: An Interdisciplinary Redefinition
  11. Resembling PROs Theoretical and Practical Evolvement. Applied Sciences
  12. (Switzerland). 2020 okt. 26;10(21):7507. doi: 10.3390/app10217507
  13. Eriksen J. Purpose, Functionality and Reconceptualisation of Patient-Reported Outcome:
  14. a patient participation perspective on pro in clinical practice post its digitalisation.
  15. Aalborg Universitetsforlag, 2021. 266 s. (Ph.d.-serien for Det Tekniske Fakultet for IT og
  16. Design, Aalborg Universitet). doi: 10.54337/aau461776857
  17. Eriksen J, Byghom A, Bertelsen P. The association between patient- reported outcomes
  18. (PROs) and patient participation in chronic care: A scoping review. Patient Educ.
  19. Couns. 2022. p. 1852-1864.
  20. U.S. Food and Drug Association (USFDA). Guidance for industry - Patient-reported outcome
  21. measures: use in medical product development to support labelling claims.
  22. https://www.fda.gov/regulatory-information/search-fda-guidance-documents/
  23. patient-reported-outcome-measures-use-medical- product-development-support-labeling-
  24. claims. Accessed 13 Apr 2023.
  25. Black N, Burke L, Forrest CB, Ravens Sieberer UH, Ahmed S, Valderas JM, et al. Patientreported
  26. outcomes: pathways to better health, better services, and better societies Qual.
  27. Life Res. 2016;doi: 10.1007/s11136-015-1168-3.
  28. Meadows KA. Patient-reported outcome measures : an overview. Br. J. Community Nurs.
  29. ;16;146–151.
  30. Deshpande P, Rajan S, Sudeepthi BL, Abdul Nazir CP. Patient- reported outcomes: A new
  31. era in clinical research. Perspect. Clin. Res. 2011; doi:10.4103/2229-3485.86879.
  32. Greenhalgh, J. The applications of PROs in clinical practice: What are they, do they work,
  33. and why? Qual. Life Res. 2009; doi:10.1007/s11136-008-9430-6.
  34. PA Consulting Group. Analyse af patient-rapporterede oplysninger (PRO) – Hovedrapport.
  35. https://digst.dk/media/12417/analyseafprohovedrapportv10.pdf. Accessed 13
  36. March 2023.
  37. The Danish Ministry of Health (SM). A Coherent and Trustworthy Health Network for All –
  38. Digital Health Strategy 2018–2022. 2018. https://www.sum.dk/Aktuelt/Publikationer/ACoherent-
  39. andTrustworthy-Health-Network-for-All.aspx. Accessed 13 Apr 2021.
  40. Det Nationale Forsknings- og Analysecenter for Velfærd (VIVE). Fem megatrends der
  41. udfordrer fremtidens sundhedsvæsen. 2017. https://www.vive.dk/da/udgivelser/femmegatrends-
  42. der-udfordrer- fremtidens-sundhedsvaesen-8760/. Accessed 13 Apr 2021.
  43. exploring, describing, and mapping the constitutive elements 127
  44. of patient-reported outcomes used in clinical practice
  45. Beedholm K, Strøm Jensen A-L, Frederiksen K. Patientinddragelse og politiske styring.
  46. In. Jørgensen K, editor. Patientinddragelse – politik, profession og bruger. København:
  47. Samfundslitteratur; 2019. p. 25-46.
  48. Hostetter M, Klein S. Using Patient-Reported Outcomes to Improve Health Care Quality.
  49. Quality matters; 2011;6:1-3.
  50. Bumann J, Peter M. Action fields of digital transformation–a review and comparative analysis
  51. of digital transformation maturity models and frameworks, In: Verkuil AH, Hinkelmann
  52. K, Aeschbacher M, Editors. Digitalisierung und andere Innovationsformen
  53. im Management. Basel: Edition Gesowip. 2019.
  54. Ihde D. Philosophy of Technology - an introduction, 1st ed., Paragon House Publishers,
  55. New York, 1993.
  56. Braun V, Clarke V. Using thematic analysis in psychology. Qual. Res. Psychol. 2006; https://
  57. doi.org/10.1191/1478088706qp063oa.
  58. Basch E, Spertus J, Dudley RA, Wu A, Chuahan C, Cohen P, et al. Methods for Developing
  59. Patient-Reported Outcome-Based Performance Measures (PRO-PMs). Value Health.
  60. ; http://dx.doi.org/10.1016/j.jval.2015.02.018.
  61. Mokkink LB, Terwee CB, Knol DL, Stratford PW, Alonso J, Patrick DL, et al. The COSMIN
  62. checklist for evaluating the methodological quality of studies on measurement properties:
  63. A clarification of its content. BMC Medical Research Methodology 2010 10:22.
  64. Øvretveit J, Zubkoff L, Nelson EC, Frampton S, Knudsen JL, Zimlichman E. Using patientreported
  65. outcome measurement to improve patient care. Int. J. Qual. Health Care. 2017;
  66. doi:10.1093/intqhc/mzx108.
  67. Fleischmann M, Vaughan B. The challenges and opportunities of using patient reported
  68. outcome measures (PROMs) in clinical practice. Int. J. Osteopath. Med. 2018; https://
  69. doi.org/10.1016/j.ijosm.2018.03.003.
  70. Patrick DL, Burke LB, Gwaltney CJ, Leidy NK, Martin ML, Molsen E, et al. Content validity
  71. - Establishing and reporting the evidence in newly developed patient-reported outcomes
  72. (PRO) instruments for medical product evaluation: ISPOR PRO good research
  73. practices task force report: Part 2 - Assessing respondent understanding, Value Heal.
  74. (2011) 978–988. doi:10.1016/j.jval.2011.06.013.
  75. Patrick DL, Burke LB, Gwaltney CJ, Leidy NK, Martin ML, Molsen E, et al. Content validity
  76. - Establishing and reporting the evidence in newly developed patient-reported outcomes
  77. (PRO) instruments for medical product evaluation: ISPOR PRO good research
  78. practices task force report: Part 1 - Eliciting concepts for a new PRO instrument, Value
  79. Heal. 14 (2011) 967–977. doi:10.1016/j.jval.2011.06.014.
  80. Noonan VK, Lyddiatt A, Ware P, Jaglal SB, Riopelle RJ, Bingham III CO, et al. Montreal
  81. Accord on Patient-Reported Outcomes (PROs) use series – Paper 3: patient-reported
  82. outcomes can facilitate shared decision-making and guide self-management. J. Clin.
  83. Epidemiol. 2017; http://dx.doi.org/10.1016/j.jclinepi.2017.04.017.
  84. Ishaque S, Karnon J, Chen G, Nair R, Salter AB. A systematic review of randomised controlled
  85. trials evaluating the use of patientreported outcome measures (PROMs). Qual.
  86. Life Res. 2016; https://doi.org/10.1007/s11136-018-2016-z.
  87. Black N. Patient reported outcome measures could help transform healthcare. BMJ. 2013;
  88. https://doi.org/10.1136/bmj.f167.
  89. Appleby J, Devlin A and Parkin D. Using Patient Reported Outcomes to Improve Health
  90. Care. Oxford: Wiley-Blackwel; 2016.
  91. Tidsskrift for Forskning i Sygdom og Samfund, nr. 39, 100-132
  92. Mejdahl CT, Schougaard LMV, Hjollund NH, Riiskjær E, Lomborg, K. Exploring organisational
  93. mechanisms in PRO-based follow-up in routine outpatient care - an interpretive
  94. description of the clinician perspective. BMC Health Serv. Res. 2018; https://doi.
  95. org/10.1186/s12913-018-3352-y.
  96. Mejdahl CT, Nielsen BK, Hjøllund NH, Lomborg K. Use of patient-reported outcomes in
  97. outpatient settings as a means of patient involvement and self-management support – a
  98. qualitative study of the patient perspective. Eur. J. Pers. Cent. Healthc. 2016;4:359-367.
  99. Greenhalgh J, Abhyankar P, McCluskey S, Takeuchi E, Velikova G. How do doctors refer
  100. to patient-reported outcome measures (PROMS) in oncology consultations? Qual. Life
  101. Res. 2013; doi:10.1007/s11136-012-0218-3.
  102. Hughes EF, Wu AW, Carducci MA, Snyder CF. What can I do? Recommendations for responding
  103. to issues identified by patient-reported outcomes assessments used in clinical
  104. practice. The J. Support. Oncol. 2012; doi:10.1016/j.suponc.2012.02.002.
  105. Moss HA, Havrilesky LJ. The use of patient-reported outcome tools in Gynecologic Oncology
  106. research, clinical practice, and value-based care. Gynecol. Oncol. 2 0 1 8 ;
  107. https://doi.org/10.1016/j.ygyno.2017.11.011.
  108. Nielsen AS, Kidholm K, Kayser L. Patients’ reasons for non-use of digital patient-reported
  109. outcome concepts: A scoping review. Health Informatics J. 2020;26(4):2811-2833.
  110. doi:10.1177/1460458220942649
  111. Halyard MY. The use of real-time patient-reported outcomes and quality-of-life data in oncology
  112. clinical practice. Expert Rev. Pharmacoeconomics Outcomes Res. 2011;11 suppl.
  113. : 561–570.
  114. Zimlichman E. Using patient-reported outcomes to drive patientcentered care. In: Grando
  115. MA, Rozenblum R, Bates DW, editors. Information Technology for Patient Empowerment
  116. in Healthcare. De Gruyter; 2015. pp. 241-256.
  117. Tevis SE, James TA, Kuerer HM, Pusic AL, Yao KA, Merlino J, et al. Patient-Reported Outcomes
  118. for Breast Cancer. Ann. Surg. Oncol. 2018; https://doi.org/10.1245/s10434-018-
  119. -1.
  120. Kjær ASHK, Rasmussen TA, Hjollund NH, Rodkjært LO, Storgaard M. Patientreported
  121. outcomes in daily clinical practise in HIV outpatient care. Int. J. Infect. Dis. 2018; https://
  122. doi.org/10.1016/j.ijid.2018.02.015.
  123. Leblanc TW, Abernethy AP. Patient-reported outcomes in cancer care — hearing the patient
  124. voice at greater volume. Nat. Rev. Clin. Oncol. 2017; doi:10.1038/nrclinonc.2017.153.
  125. Nelson EC, Hvitfeldt H, Reid R, Grossman D, Lindblad S, Mastanduno MP, et al. Using Patient-
  126. Reported Information to Improve Health Outcomes and Health Care Value: Case
  127. studies from Dartmouth, Karolinska and Group Health. Lebanon, New Hampshire:
  128. The Dartmouth Institute for Health Policy and Clinical Practice; 2012. 54 p.
  129. Boyce MB, Browne JP, Greenhalgh J. The experiences of professionals with using information
  130. from patient-reported outcome measures to improve the quality of healthcare:
  131. a systematic review of qualitative research. BMJ Qual Saf. 2014;23:508–18. https://doi.
  132. org/10.1136/bmjqs-2013-002524.
  133. Rieckmann P, Boyko A, Centonze D, Elovaara I, Giovannoni G, Havrdová E, et al. Achieving
  134. patient engagement in multiple sclerosis: A perspective from the multiple sclerosis
  135. in the 21st Century Steering Group. Mult. Scler. Relat. Disord. 2015; http://dx.doi.
  136. org/10.1016/j.msard.2015.02.005.
  137. exploring, describing, and mapping the constitutive elements 129
  138. of patient-reported outcomes used in clinical practice
  139. Wang MC, Bellows J. Quality of Life and Patient-Reported Outcomes. In T. P. Daaleman,
  140. M.R. Helton, editors. Chronic Illness Care - Principles and Practice. Springer Nature;
  141. p. 95-111.
  142. Rose M, Bezjak A. Logistics of collecting patient-reported outcomes (PROs) in clinical practice:
  143. an overview and practical examples. Qual. Life Res. 2009; doi:10.1007/s11136-008-
  144. -0.
  145. Ysrraelit MC, Fiol MP, Gaitán MI, Correale. Quality of Life Assessment in Multiple Sclerosis:
  146. Different Perception between Patients and Neurologists. Front. Neurol. 2018;
  147. doi:10.3389/fneur.2017.00729.
  148. Staniszewska S, Haywood KL, Breet J, Tutton L. Patient and public involvement in patient-reported
  149. outcome measures: Evolution not revolution. Patient. 2012; doi:10.2165/11597150-
  150. -00000.
  151. Chang S, Newton PJ, Inglis S, Luckett T, Krum H, Macdonald P, et al. Are all outcomes in
  152. chronic heart failure rated equally? An argument for a patient-centred approach to
  153. outcome assessment. Heart Failure Reviews. 2014; doi:10.1007/s10741-012-9369-0.
  154. Cannella L, Efficace F, Giesinger J. How should we assess patient- reported outcomes
  155. in the onco-hematology clinic? Curr. Opin. Support Palliat. Care. 2018; doi:10.1097/
  156. SPC.0000000000000386.
  157. Haywood KL, De Wit M, Staniszewska S, Morel T, Salck S. Developing Patient-Reported
  158. and Relevant Outcome Measures. In: Facey KM, Hansen HP and Single ANV, editors.
  159. Patient Involvement in Health Technology Assessment. Singapore: Springer Nature
  160. Singapore; 2017. p. 103–120.
  161. Wiering B, De Boer D and Delnoij D. Patient involvement in the development of patient-reported
  162. outcome measures: a scoping review. Health Expect. 2017; doi:10.1111/hex.12442.
  163. McHorney MC. Health Status Assessment for Adults: Past Accomplishments and Future
  164. Challenges. Annu. Rev. Public Health. 1999;20:309-335.
  165. Lipscomb J, Gotay CC, Snyder CF. Patient-reported outcomes in cancer: A review of recent
  166. research and policy initiatives. CA Cancer J. Clin. 2007; doi:10.3322/CA.57.5.278.
  167. Glouberman, S. PROMs: a critical step, but only one of many. In: Leatt P, Smith T, Foster-
  168. Kent D, editors. Let’s go to the PROM: The Case for Routine Patient-Reported Outcome
  169. Measurement in Canadian Healthcare. HealthcarePapers; 2011. p. 29– 58.
  170. Velikova G, Booth L, Smith AB, Brown PM, Lynch P, Brown JM, et al. Measuring quality
  171. of life in routine oncology practice improves communication and patient well-being: A
  172. randomized controlled trial. J. Clin. Oncol. 2004; doi:10.1200/JCO.2004.06.078.
  173. Bingham III CO, Noonan VK, Auger C, Feldman DE, Ahmed S, Bartlett SJ. Montreal Accord
  174. on Patient-Reported Outcomes (PROs) use series – Paper 4: patient-reported outcomes
  175. can inform clinical decision making in chronic care. J. Clin. Epidemiol. 2017;
  176. http://dx.doi.org/10.1016/j.jclinepi.2017.04.014.
  177. Huebner J, Rosé C, Geissler J, Gleiter CH, Prott FJ, Muenstedt K, et al. Integrating cancer
  178. patients’ perspectives into treatment decisions and treatment evaluation using patientreported
  179. outcomes - A concept paper. Eur. J. Cancer Care. 2014; doi:10.1111/ecc.12095.
  180. Dean S, Mathers JM, Calvert M, Kyte DG, Conroy D, Folkard A, et al. ‘The patient is
  181. speaking’: Discovering the patient voice in ophthalmology. Br. J. Ophthalmol. 2017;
  182. doi:10.1136/bjophthalmol- 2016-309955.
  183. Tidsskrift for Forskning i Sygdom og Samfund, nr. 39, 100-132
  184. Snyder CF, Aaronson NK, Choucair AK, Elliott TE, Greenhalgh J, Halyard MY, et al. Implementing
  185. patient-reported outcomes assessment in clinical practice: A review of the
  186. options and considerations. Qual. Life Res. 2012; 10.1007/s11136-011-0054-x.
  187. Marquis P, Arnoud B, Acquadro C, Roberts WM. Patient-reported outcomes and healthrelated
  188. quality of life in effectiveness studies: Pros and cons. Drug Dev. Res. 2006;
  189. doi:10.1002/ddr.20077.
  190. Palfreyman S. Patient-reported outcome measures and how they are used. Nurs. Older
  191. People. 2011;23:31–36.
  192. Gensheimer SG, Wu AW, Snyder CF, PRO EHR Users’ Guide Steering Group, PRO EHR
  193. Users’ Guide Working Group. Oh, the places we’ll go: Patient-reported outcomes and
  194. electronic health records. Patient. 2018; https://doi.org/10.1007/s40271-018-0321-9.
  195. Smith S, Weldring T. Patient-Reported Outcomes (PROs) and Patient-Reported Outcome
  196. Measures (PROMs). Health Serv. Insights. 2013; doi:10.4137/HSI.S11093.
  197. Costal Tirado A, McDermott AM, Thomas C, Ferrick D, Harris J, Edwards A, et al. Using
  198. Patient-Reported Outcome Measures for Quality Improvement in Clinical Genetics: an
  199. Exploratory Study. J. Genet. Counsel. 2017; doi:10.1007/s10897-017-0079-6.
  200. Wu AW, White SM, Blackford AL, Wolff AC, Carducci MA, Herman JM, et al. Improving
  201. an electronic system for measuring PROs in routine oncology practice. J. Cancer Surviv.
  202. ; 10.1007/s11764-015-0503-6.
  203. Alonso J, Bartlett SJ, Rose M, Aaronson NK, Chapin JE, Efficace F, et al. The case for an
  204. international patient-reported outcomes measurement information system (PROMIS
  205. (R)) initiative. Health Qual. Life Outcomes. 2013; http://www.hqlo.com/content/11/1/210.
  206. Jayadevappa R, Chhatre S. Patient centered care—A conceptual model and review of the
  207. state of the art. Open Health Serv. Policy J. 2011, 4, 15–25.
  208. Bowyer A, Royse C. A matter of perspective – Objective versus subjective outcomes in the
  209. assessment of quality of recovery. Best Pract. Res. Clin. Anaesthesiol.
  210. ; https://doi.org/10.1016/j.bpa.2018.02.003.
  211. Hewlett SA. Patients and Clinicians Have Different Perspectives on Outcomes in Arthritis.
  212. J. Rheumatol. 2003;30:877-879.
  213. Haywood K, Marshall S, Fitzpatrick R. Patient participation in the consultation process:
  214. A structured review of intervention strategies. Patient Educ. Couns. 2006; doi:10.1016/j.
  215. pec.2005.10.005.
  216. Lavallee DC, Chenok KE, Love RM, Petersen C, Holve E, Segal CD, et al. Incorporating
  217. patient-reported outcomes into health care to engage patients and enhance care. Health
  218. Aff. 2016; 35:575-582.
  219. Chang CH. Patient-reported outcomes measurement and management with innovative
  220. methodologies and technologies. Qual. Life Res. 2007; doi:10.1007/s11136-007-9196-2.
  221. MedCom. Patientrapporterede oplysninger (PRO) i almen praksis. 2019. https://medcom.
  222. dk/statistik/patientrapporterede-oplysninger-pro-i-almen-praksis/. Accessed 13 March
  223. Settanni H. Holism – A Philosophy for Today Anticipating the Twenty First Century. Peter
  224. Lang Gmbh, Internationaler Verlag Der Wissenschaften; 1990.
  225. Børsen T. Identifying Interdisciplinary Core Competencies in Techno-Anthropology: Interactional
  226. expertise, social responsibility competence, and skills in anthropologydriven
  227. design. In: Børsen T, Botin L, editors. What is Techno-Anthropology? Aalborg:
  228. Aalborg University Press; 2013. p. 35-66.
  229. exploring, describing, and mapping the constitutive elements 131
  230. of patient-reported outcomes used in clinical practice
  231. Walton DM. Making (common) sense of outcome measures. Man. Ther. 2015; http://dx.doi.
  232. org/10.1016/j.math.2015.11.001.
  233. Torenholt R., Saltbæk L., & Langstrup H. Patient data work: filtering and sensing patient‐reported
  234. outcomes. Sociology of Health & Illness, 42(6), 1379-1393. 2020; doi: 10.1111/1467-
  235. 13114
  236. Ammenwerth E, Rigby M. Evidence-Based Health Informatics - Promoting Safety and Efficiency
  237. through Scientific Methods and Ethical Policy. Studies in Health Technology
  238. and Informatics, IOS Press; 2016.
  239. Exell S, Thristan M, Dangond F, Marhardt K, St Charles-Krohe M, Turner-Bowker DM. A
  240. novel electronic application of patient- reported outcomes in multiple sclerosis - Meeting
  241. the necessary challenge of assessing quality of life and outcomes in daily clinical
  242. practice. Eur. Neurol. Rev. 2014; doi:10.17925/ENR.2014.09.01.49.
  243. Mejdahl CT, Schougaard LMV, Hjollund NH, Riiskjær E, Thorne S, Lomborg K. PRO-based
  244. follow-up as a means of self-management support – an interpretive description of the
  245. patient perspective. JPRO. 2018; https://doi.org/10.1186/s41687-018-0067-0.
  246. Showell C, Turner P. The PLU problem: Are we designing personal Ehealth for people like
  247. us? Stud. Health Technol. Inform. 2013; doi: 10.3233/978-1-61499-203-5-276.
  248. Division of mental health and Prevention of Substance Abuse. Programme on Mental
  249. Health. World Health Organization (WHO). Programme on Mental Health.
  250. https://www.who.int/publications/i/item/WHO-HIS-HSI- Rev.2012 03. Accessed
  251. March 2023.
  252. Schwartz CE, Sprangers MAG. An introduction to quality of life asssessment in oncology:
  253. The value of measuring patientreported outcomes. Am. J. Manag. Care 2002;8 Suppl
  254. :550-559.
  255. McKenna SP, Wilburn J. Patient value: its nature, measurement, and role in real world evidence
  256. studies and outcomes-based reimbursement. J. Med. Econ. 2018; https://doi.or
  257. g/10.1080/13696998.2018.1450260.
  258. Vallgårda S. Hvordan mindsker vi uligheden i sundhed? Kbh: Informations forlag; 2019.
  259. Jahagirdar D, Kroll T, Ritchie K, Wyke S. Using patient reported outcome measures in
  260. health services: a qualitative study on including people with low literacy skills and
  261. learning disabilities. BMC Health Serv. Res. 2012; https://doi.org/10.1186/1472-6963-12-
  262. Kiltz U, Boonen A, Braun J, Richter JG. Electronic assessment of disease activity and functioning
  263. in patients with axial spondyloarthritis: challenges and unmet needs. Clin.
  264. Exp. Rheumatol. 2016;34 Suppl 5: 57–61.
  265. Segan L, Nanayakkara S, Mak V, Kaye D. Enhancing self-care strategies in heart failure
  266. through patient-reported outcome measures. Intern. Med. J. 2018; doi:10.1111/imj.13977.
  267. Luckett T, Butow PN, King MT. Improving patient outcomes through the routine use of
  268. patient-reported data in cancer clinics: Future directions. Psycho-Oncol. 2009; 10.1002/
  269. pon.1545.
  270. Schougaard LMV, Mejdahl CT, Petersen KH, Jessen A, de Thurah A, Sidenius P, et al. Effect
  271. of patient-initiated versus fixed-interval telePRO-based outpatient follow-up: Study
  272. protocol for a pragmatic randomised controlled study. BMC Health Serv. Res. 2017;
  273. doi:10.1186/s12913-017-2015-8.
  274. Bennett AV, Jensen RE, Basch E. Electronic patientreported outcome systems in oncology
  275. clinical practice. CA Cancer J. Clin. 2012; doi:10.3322/caac.21150.
  276. Tidsskrift for Forskning i Sygdom og Samfund, nr. 39, 100-132
  277. Lin H-C, Wu H-C, Chang C-H, Li T-C, Liang W-M, Wang J-Y. A real time online assessment
  278. system with modelized architecture on clinical infometrics for patient reported
  279. outcomes of prostate cancer. Comput. Methods Programs Biomed. 2012; doi:10.1016/j.
  280. cmpb.2010.10.003.
  281. Fautrel B, Alten R, Kirkham B, de la Torre I, Durand F, Barry J, et al. Call for action: how to
  282. improve use of patient-reported outcomes to guide clinical decision making in rheumatoid
  283. arthritis. Rheumatol. Int. 2018; https://doi.org/10.1007/s00296-018-4005-5.
  284. Chen J, Ou L, Hollis SJ. A systematic review of the impact of routine collection of patient
  285. reported outcome measures on patients, providers and health organisations in an oncologic
  286. setting. BMC Health Serv. Res. 2013; https://doi.org/10.1186/1472-6963-13-211.
  287. Porter ME. What Is Value in Health Care? N. Engl. J. Med. Perspective. 2010; doi: 10.1056/
  288. NEJMp1011024.
  289. Schougaard LMV, Larsen LP, Jessen A, Sidenius P, Dorflinger L, de Thurah A, et al. Ambu-
  290. Flex: telepatient-reported outcomes (telePRO) as the basis for follow-up in chronic and
  291. malignant diseases. Qual. Life Res. 2016; doi:10.1007/s11136-015-1207-0.
  292. Yang LY, Manhas DS, Howard AF, Olson RA. Patient-reported outcome use in oncology:
  293. a systematic review of the impact on patient-clinician communication. Support. Care
  294. Cancer. 2018; doi:10.1007/s00520-017-3865-7.
  295. Hughes TM, Merath K, Chen Q, Sun S, Palmer E, Idrees JJ, et al. Association of shared
  296. decision-making on patient-reported health outcomes and healthcare utilization. Am.
  297. J. Surg. 2018; https://doi.org/10.1016/j.amjsurg.2018.01.011.
  298. Brundage MD, Smith KC, Little EA, Bantug ET, Snyder CF, The Pro data Presentation
  299. Stakeholder Advisory Board. Communicating patient-reported outcome scores using
  300. graphic formats: results from a mixed-methods evaluation. Qual. Life Res. 2015;
  301. doi:10.1007/s11136-015-0974-y.
  302. Sartorius N. Patient-reported outcomes in psychiatry. Dialogues Clin. Neurosci.
  303. ;16:123–124.
  304. Antunes B, Rodrigues PP, Higginson IJ, Ferreira PL. Outcome measurement - a scoping review
  305. of the literature and future developments in palliative care clinical practice. Ann.
  306. Palliat. Med. 2018; 7 Suppl 3:196-206.
  307. Dansk Sygepleje Selskab (DASYS). http://www.dasys.dk/dokumentationsraad/afholdtekonferencer.
  308. aspx. Accessed 13 March 2023.