Skip to main content
Erschienen in: The Patient - Patient-Centered Outcomes Research 6/2016

01.12.2016 | Editorial

Using PROMs in Healthcare: Who Should Be in the Driving Seat—Policy Makers, Health Professionals, Methodologists or Patients?

verfasst von: Kirstie L. Haywood, Roger Wilson, Sophie Staniszewska, Sam Salek

Erschienen in: The Patient - Patient-Centered Outcomes Research | Ausgabe 6/2016

Einloggen, um Zugang zu erhalten

Excerpt

The recent Cancer Strategy for England (2016) highlights that by March 2017 NHS England will have agreed an approach for data collection which includes patient-reported outcome measures (PROMs) as a means for assessing long-term quality of life (QoL) for cancer patients [1]. Moreover, it indicates that “people affected by cancer (and clinical leaders) … will be in the driving seat for improving quality across cancer pathways” ([1] p. 18). …
Literatur
3.
Zurück zum Zitat Whitehead L, Perkins GD, Clarey A, Haywood KL. A systematic review of the outcomes reported in cardiac arrest clinical trials: the need for a core outcome set. Resuscitation. 2015;88:150–7. Whitehead L, Perkins GD, Clarey A, Haywood KL. A systematic review of the outcomes reported in cardiac arrest clinical trials: the need for a core outcome set. Resuscitation. 2015;88:150–7.
4.
Zurück zum Zitat Hewlett SA. Patients and clinicians have different perspectives on outcomes in arthritis. J Rheumatol. 2003;30(4):877–9. Hewlett SA. Patients and clinicians have different perspectives on outcomes in arthritis. J Rheumatol. 2003;30(4):877–9.
5.
Zurück zum Zitat Staniszewska S, Haywood KL, Brett J, Tutton L. Patient and public involvement in patient-reported outcome measures: evolution not revolution. Patient. 2012;5(2):79–87.CrossRefPubMed Staniszewska S, Haywood KL, Brett J, Tutton L. Patient and public involvement in patient-reported outcome measures: evolution not revolution. Patient. 2012;5(2):79–87.CrossRefPubMed
6.
Zurück zum Zitat Gough NJ, Smith C, Ross JR, Riley J, Judson I. Symptom burden, survival and palliative care in advanced soft tissue sarcoma. Sarcoma. 2011;2011. Article ID 325189 (Epub Dec 2011). Gough NJ, Smith C, Ross JR, Riley J, Judson I. Symptom burden, survival and palliative care in advanced soft tissue sarcoma. Sarcoma. 2011;2011. Article ID 325189 (Epub Dec 2011).
7.
Zurück zum Zitat Williamson PR, Altman DG, Blazeby JM, Clarke M, Devane D, Gargon E, Tugwell P. Developing core outcome sets for clinical trials: issues to consider. Trials. 2012;13:132. Williamson PR, Altman DG, Blazeby JM, Clarke M, Devane D, Gargon E, Tugwell P. Developing core outcome sets for clinical trials: issues to consider. Trials. 2012;13:132.
8.
Zurück zum Zitat Schmitt J, Langan S, Stamm T, Williams HC; Harmonizing Outcome Measurements in Eczema (HOME) Delphi panel. Core outcome domains for controlled trials and clinical recordkeeping in eczema: international multiperspective Delphi consensus process. J Invest Dermatol. 2011;131(3):623–30. Schmitt J, Langan S, Stamm T, Williams HC; Harmonizing Outcome Measurements in Eczema (HOME) Delphi panel. Core outcome domains for controlled trials and clinical recordkeeping in eczema: international multiperspective Delphi consensus process. J Invest Dermatol. 2011;131(3):623–30.
9.
Zurück zum Zitat Haywood KL, Whitehead L, Perkins GD. The psychosocial outcomes of cardiac arrest: relevant and robust patient-centred assessment is essential. Resuscitation. 2014;85(6):718. Haywood KL, Whitehead L, Perkins GD. The psychosocial outcomes of cardiac arrest: relevant and robust patient-centred assessment is essential. Resuscitation. 2014;85(6):718.
10.
Zurück zum Zitat Murdoch TB, Detsky AS. The inevitable application of big data to health care. JAMA. 2013;309(13):1351–2.CrossRefPubMed Murdoch TB, Detsky AS. The inevitable application of big data to health care. JAMA. 2013;309(13):1351–2.CrossRefPubMed
12.
Zurück zum Zitat Kirkham JJ, Dwan KM, Altman DG, Gamble C, Dodd S, Smyth R, Williamson PR. The impact of outcome reporting bias in randomised controlled trials on a cohort of systematic reviews. BMJ. 2010;340:c365. Kirkham JJ, Dwan KM, Altman DG, Gamble C, Dodd S, Smyth R, Williamson PR. The impact of outcome reporting bias in randomised controlled trials on a cohort of systematic reviews. BMJ. 2010;340:c365.
13.
Zurück zum Zitat Smith V, Clarke M, Williamson P, Gargon E. Survey of new 2007 and 2011 Cochrane reviews found 37 % of prespecified outcomes not reported. J Clin Epidemiol. 2015;68(3):237–45. Smith V, Clarke M, Williamson P, Gargon E. Survey of new 2007 and 2011 Cochrane reviews found 37 % of prespecified outcomes not reported. J Clin Epidemiol. 2015;68(3):237–45.
14.
Zurück zum Zitat Huber M, Knottnerus JA, Green L, van der Horst H, Jadad AR, Kromhout D, Leonard B, Lorig K, Loureiro MI, van der Meer JW, Schnabel P, Smith R, van Weel C, Smid H. How should we define health? BMJ. 2011;343:d4163. Huber M, Knottnerus JA, Green L, van der Horst H, Jadad AR, Kromhout D, Leonard B, Lorig K, Loureiro MI, van der Meer JW, Schnabel P, Smith R, van Weel C, Smid H. How should we define health? BMJ. 2011;343:d4163.
15.
Zurück zum Zitat Garratt A, Schmidt L, Mackintosh A, Fitzpatrick R. Quality of life measurement: bibliographic study of patient assessed health outcome measures. BMJ. 2002; 324(7351):1417. Garratt A, Schmidt L, Mackintosh A, Fitzpatrick R. Quality of life measurement: bibliographic study of patient assessed health outcome measures. BMJ. 2002; 324(7351):1417.
16.
Zurück zum Zitat Haywood KL, Staniszewska S, Chapman S. Quality and acceptability of patient-reported outcome measures used in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review. Qual Life Res. 2012;21(1):35–52. Haywood KL, Staniszewska S, Chapman S. Quality and acceptability of patient-reported outcome measures used in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review. Qual Life Res. 2012;21(1):35–52.
19.
Zurück zum Zitat Longworth L, Yang Y, Young T. Use of generic and condition-specific measures of health-related quality of life in NICE decision-making: a systematic review, statistical modelling and survey. Health Technol Assess. 2014;18(9). ISSN 1366-5278. Longworth L, Yang Y, Young T. Use of generic and condition-specific measures of health-related quality of life in NICE decision-making: a systematic review, statistical modelling and survey. Health Technol Assess. 2014;18(9). ISSN 1366-5278.
21.
Zurück zum Zitat Hobart JC, Cano SJ, Zajicek JP, Thompson AJ. Rating scales as outcome measures for clinical trials in neurology: problems, solutions, and recommendations. Lancet Neurol. 2007;6:1094–105.CrossRefPubMed Hobart JC, Cano SJ, Zajicek JP, Thompson AJ. Rating scales as outcome measures for clinical trials in neurology: problems, solutions, and recommendations. Lancet Neurol. 2007;6:1094–105.CrossRefPubMed
22.
Zurück zum Zitat de Wit M, Abma T, Koelewijn-van Loon M, Collins S, Kirwan J. Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences. BMJ Open. 2013;3(5) (pii: e002241). de Wit M, Abma T, Koelewijn-van Loon M, Collins S, Kirwan J. Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences. BMJ Open. 2013;3(5) (pii: e002241).
23.
Zurück zum Zitat Gossec L, de Wit M, Kiltz U, Braun J, Kalyoncu U, Scrivo R, Maccarone M, Carton L, Otsa K, Sooäär I, Heiberg T, Bertheussen H, Cañete JD, Sánchez Lombarte A, Balanescu A, Dinte A, de Vlam K, Smolen JS, Stamm T, Niedermayer D, Békés G, Veale D, Helliwell P, Parkinson A, Luger T, Kvien TK; EULAR PsAID Taskforce. A patient-derived and patient-reported outcome measure for assessing psoriatic arthritis: elaboration and preliminary validation of the Psoriatic Arthritis Impact of Disease (PsAID) questionnaire, a 13-country EULAR initiative. Ann Rheum Dis. 2014;73(6):1012–9. Gossec L, de Wit M, Kiltz U, Braun J, Kalyoncu U, Scrivo R, Maccarone M, Carton L, Otsa K, Sooäär I, Heiberg T, Bertheussen H, Cañete JD, Sánchez Lombarte A, Balanescu A, Dinte A, de Vlam K, Smolen JS, Stamm T, Niedermayer D, Békés G, Veale D, Helliwell P, Parkinson A, Luger T, Kvien TK; EULAR PsAID Taskforce. A patient-derived and patient-reported outcome measure for assessing psoriatic arthritis: elaboration and preliminary validation of the Psoriatic Arthritis Impact of Disease (PsAID) questionnaire, a 13-country EULAR initiative. Ann Rheum Dis. 2014;73(6):1012–9.
24.
Zurück zum Zitat US Food and Drug Administration Guidance for Industry: Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims. Rockville: Department of Health and Human Services, Food and Drug Administration, Centre for Drug Evaluation and Research; 2009. US Food and Drug Administration Guidance for Industry: Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims. Rockville: Department of Health and Human Services, Food and Drug Administration, Centre for Drug Evaluation and Research; 2009.
25.
Zurück zum Zitat Patrick DL, Burke LB, Gwaltney CJ, Leidy NK, Martin ML, Molsen E, Ring L. Content validity–establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: part 1–eliciting concepts for a new PRO instrument. Value Health. 2011;14(8):967–77. Patrick DL, Burke LB, Gwaltney CJ, Leidy NK, Martin ML, Molsen E, Ring L. Content validity–establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: part 1–eliciting concepts for a new PRO instrument. Value Health. 2011;14(8):967–77.
26.
Zurück zum Zitat de Wit MP, Kvien TK, Gossec L. Patient participation as an integral part of patient-reported outcomes development ensures the representation of the patient voice: a case study from the field of rheumatology. RMD Open. 2015;1(1):e000129. de Wit MP, Kvien TK, Gossec L. Patient participation as an integral part of patient-reported outcomes development ensures the representation of the patient voice: a case study from the field of rheumatology. RMD Open. 2015;1(1):e000129.
27.
Zurück zum Zitat Cheung PP, de Wit M, Bingham CO 3rd, Kirwan JR, Leong A, March LM, Montie P, Scholte-Voshaar M, Gossec L. Recommendations for the Involvement of Patient Research Partners (PRP) in OMERACT Working Groups. A Report from the OMERACT 2014 Working Group on PRP. J Rheumatol. 2016;43(1):187–93. Cheung PP, de Wit M, Bingham CO 3rd, Kirwan JR, Leong A, March LM, Montie P, Scholte-Voshaar M, Gossec L. Recommendations for the Involvement of Patient Research Partners (PRP) in OMERACT Working Groups. A Report from the OMERACT 2014 Working Group on PRP. J Rheumatol. 2016;43(1):187–93.
28.
Zurück zum Zitat Tillett W, Adebajo A, Brooke M, Campbell W, Coates LC, FitzGerald O, Gossec L, Helliwell P, Hewlett S, James J, Minnock P, Reast A, O’Sullivan D, de Wit M, McHugh N. Patient involvement in outcome measures for psoriatic arthritis. Curr Rheumatol Rep. 2014;16(5):418. Tillett W, Adebajo A, Brooke M, Campbell W, Coates LC, FitzGerald O, Gossec L, Helliwell P, Hewlett S, James J, Minnock P, Reast A, O’Sullivan D, de Wit M, McHugh N. Patient involvement in outcome measures for psoriatic arthritis. Curr Rheumatol Rep. 2014;16(5):418.
29.
Zurück zum Zitat Frank L, Forsythe L, Ellis L, Schrandt S, Sheridan S, Gerson J, Konopka K, Daugherty S. Conceptual and practical foundations of patient engagement in research at the patient-centred outcomes research institute. QLRes. 2015;24:1033–41. Frank L, Forsythe L, Ellis L, Schrandt S, Sheridan S, Gerson J, Konopka K, Daugherty S. Conceptual and practical foundations of patient engagement in research at the patient-centred outcomes research institute. QLRes. 2015;24:1033–41.
30.
Zurück zum Zitat Stewart D, Wilson R, Selby P, Darbyshire J. Patient and public involvement. Ann Oncol. 2011;22(Suppl 7):vii54–56. Stewart D, Wilson R, Selby P, Darbyshire J. Patient and public involvement. Ann Oncol. 2011;22(Suppl 7):vii54–56.
31.
Zurück zum Zitat de Vet HC, Terwee CB, Ostelo RW, Beckerman H, Knol DL, Bouter LM. Minimal changes in health status questionnaires: distinction between minimally detectable change and minimally important change. Health Qual Life Outcomes. 2006;4:54. de Vet HC, Terwee CB, Ostelo RW, Beckerman H, Knol DL, Bouter LM. Minimal changes in health status questionnaires: distinction between minimally detectable change and minimally important change. Health Qual Life Outcomes. 2006;4:54.
32.
Zurück zum Zitat de Vet HCW, Terwee CB, Mokkink L, Knol D. Measurement in medicine: a practical guide (Practical Guides to Biostatistics and Epidemiology). Cambridge: Cambridge University Press; 2011. de Vet HCW, Terwee CB, Mokkink L, Knol D. Measurement in medicine: a practical guide (Practical Guides to Biostatistics and Epidemiology). Cambridge: Cambridge University Press; 2011.
33.
Zurück zum Zitat Ahmed S, Bartlett SJ, Ernst P, Paré G, Kanter M, Perreault R, Grad R, Taylor L, Tamblyn R. Effect of a web-based chronic disease management system on asthma control and health-related quality of life: study protocol for a randomized controlled trial. Trials. 2011;12:260. Ahmed S, Bartlett SJ, Ernst P, Paré G, Kanter M, Perreault R, Grad R, Taylor L, Tamblyn R. Effect of a web-based chronic disease management system on asthma control and health-related quality of life: study protocol for a randomized controlled trial. Trials. 2011;12:260.
34.
Zurück zum Zitat Santana MJ1, Haverman L, Absolom K, Takeuchi E, Feeny D, Grootenhuis M, Velikova G. Training clinicians in how to use patient-reported outcome measures in routine clinical practice. Qual Life Res. 2015;24(7):1707–18 (Epub 2015 Jan 15). Santana MJ1, Haverman L, Absolom K, Takeuchi E, Feeny D, Grootenhuis M, Velikova G. Training clinicians in how to use patient-reported outcome measures in routine clinical practice. Qual Life Res. 2015;24(7):1707–18 (Epub 2015 Jan 15).
35.
Zurück zum Zitat Haywood K, Marshall S, Fitzpatrick R. Patient participation in the consultation process: a structured review of intervention strategies. Patient Educ Couns. 2006;63(1–2):12–23. Haywood K, Marshall S, Fitzpatrick R. Patient participation in the consultation process: a structured review of intervention strategies. Patient Educ Couns. 2006;63(1–2):12–23.
36.
Zurück zum Zitat Greenhalgh J, Long AF, Flynn R. The use of patient reported outcome measures in routine clinical practice: lack of impact or lack of theory? Soc Sci Med. 2005;60(4):833–43. Greenhalgh J, Long AF, Flynn R. The use of patient reported outcome measures in routine clinical practice: lack of impact or lack of theory? Soc Sci Med. 2005;60(4):833–43.
Metadaten
Titel
Using PROMs in Healthcare: Who Should Be in the Driving Seat—Policy Makers, Health Professionals, Methodologists or Patients?
verfasst von
Kirstie L. Haywood
Roger Wilson
Sophie Staniszewska
Sam Salek
Publikationsdatum
01.12.2016
Verlag
Springer International Publishing
Erschienen in
The Patient - Patient-Centered Outcomes Research / Ausgabe 6/2016
Print ISSN: 1178-1653
Elektronische ISSN: 1178-1661
DOI
https://doi.org/10.1007/s40271-016-0197-5

Weitere Artikel der Ausgabe 6/2016

The Patient - Patient-Centered Outcomes Research 6/2016 Zur Ausgabe