Patient-reported outcomes in the Swedish National Quality Registers

Journal of Internal Medicine

Volumn 279, Issue 2, 2016, Pages 141-153

  Nilsson, E ^a   Orwelius, L ^a   Kristenson, M ^a  

^a LINKÖPING UNIVERSITY   (Sweden)

Author keywords

PREM; PROM; Health related quality of life; Quality improvement; Quality register

Indexed keywords

ECONOMIC EVALUATION; FUNDING; HEALTH BEHAVIOR; HEALTH CARE QUALITY; HIP ARTHROPLASTY; HUMAN; INTENSIVE CARE; PATIENT REPORTED OUTCOME; PATIENT SATISFACTION; PRIORITY JOURNAL; QUALITY OF LIFE; REVIEW; SELF REPORT; SHORT FORM 36; SWEDEN; TOTAL QUALITY MANAGEMENT; TREATMENT OUTCOME; ARTHROPLASTY; CATARACT EXTRACTION; CEREBROVASCULAR ACCIDENT; ELECTRONIC HEALTH RECORD; FOLLOW UP; HIP; OUTCOME ASSESSMENT; PRACTICE GUIDELINE; PSYCHOLOGY; QUESTIONNAIRE; REGISTER;

ARTHROPLASTY; CATARACT EXTRACTION; CRITICAL CARE; ELECTRONIC HEALTH RECORDS; FOLLOW-UP STUDIES; HIP JOINT; HUMANS; PATIENT OUTCOME ASSESSMENT; PATIENT SATISFACTION; PRACTICE GUIDELINES AS TOPIC; QUALITY IMPROVEMENT; QUALITY OF LIFE; REGISTRIES; STROKE; SURVEYS AND QUESTIONNAIRES; SWEDEN;

EID: 84955062627     PISSN: 09546820     EISSN: 13652796     Source Type: Journal    
DOI: 10.1111/joim.12409     Document Type: Review

References (84)

1. Chassany O, Le-Jeunne P, Duracinsky M, Schwalm MS, Mathieu M. Discrepancies between patient-reported outcomes and clinician-reported outcomes in chronic venous disease, irritable bowel syndrome, and peripheral arterial occlusive disease. Value Health 2006; 9: 39-46.
2. Christodoulou M, McCloskey P, Stones N et al. Investigation of a Patient Reported Outcome tool to assess radiotherapy-related toxicity prospectively in patients with lung cancer. Radiotherapy Oncol 2014; 112: 244-9.
3. Thyberg I, Skogh T, Hass UA, Gerdle B. Recent-onset rheumatoid arthritis: a 1-year observational study of correlations between health-related quality of life and clinical/laboratory data. J Rehabil Med 2005; 37: 159-65.
4. Willke RJ, Burke LB, Erickson P. Measuring treatment impact: a review of patient-reported outcomes and other efficacy endpoints in approved product labels. Control Clin Trials 2004; 25: 535-52.
5. Liu J, Mittendorf T, von der Schulenburg JM. A structured review and guide through studies on health-related quality of life in kidney cancer, hepatocellular carcinoma, and leukemia. Cancer Invest 2010; 28: 312-22.
6. Both H, Essink-Bot ML, Busschbach J, Nijsten T. Critical review of generic and dermatology-specific health-related quality of life instruments. J Invest Dermatol 2007; 127: 2726-39.
7. Karlsson TS, Marions LB, Edlund MG. Heavy menstrual bleeding significantly affects quality of life. Acta Obstet Gynecol Scand 2014; 93: 52-7.
8. Hakkinen A, Kautiainen H, Sintonen H, Ylinen J. Health related quality of life after lumbar disc surgery: a prospective study of 145 patients. Disabil Rehabil 2005; 27: 94-100.
9. Korfage IJ, Essink-Bot ML, Mols F, van de Poll-Franse L, Kruitwagen R, van Ballegooijen M. Health-related quality of life in cervical cancer survivors: a population-based survey. Int J Radiat Oncol Biol Phys 2009; 73: 1501-9.
10. Brooks R. EuroQol: the current state of play. Health Policy 1996; 37: 53-72.
11. Brooks RG, Jendteg S, Lindgren B, Persson U, Bjork S. EuroQol: health-related quality of life measurement. Results of the Swedish questionnaire exercise. Health Policy 1991; 18: 37-48.
12. Devlin NJ, Parkin D, Browne J. Patient-reported outcome measures in the NHS: new methods for analysing and reporting EQ-5D data. Health Econ 2010; 19: 886-905.
13. Hays RD, Morales LS. The RAND-36 measure of health-related quality of life. Ann Med 2001; 33: 350-7.
14. Hays RD, Sherbourne CD, Mazel RM. The RAND 36-Item Health Survey 1.0. Health Econ 1993; 2: 217-27.
15. Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 1992; 30: 473-83.
16. Brazier J, Roberts J, Deverill M. The estimation of a preference-based measure of health from the SF-36. J Health Econom 2002; 21: 271-92.
17. Calvert M, Brundage M, Jacobsen PB, Schunemann HJ, Efficace F. The CONSORT Patient-Reported Outcome (PRO) extension: implications for clinical trials and practice. Health Qual Life Outcomes 2013; 11: 184.
18. Calvert M, Kyte D, Duffy H et al. Patient-reported outcome (PRO) assessment in clinical trials: a systematic review of guidance for trial protocol writers. PLoS One 2014; 9: e110216.
19. Reeve BB, Wyrwich KW, Wu AW et al. ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research. Quality Life Res 2013; 22: 1889-905.
20. Valderas JM, Ferrer M, Mendivil J et al. Development of EMPRO: a tool for the standardized assessment of patient-reported outcome measures. Value Health 2008; 11: 700-8.
21. Snyder CF, Watson ME, Jackson JD, Cella D, Halyard MY, Mayo FDAP-ROCMG. Patient-reported outcome instrument selection: designing a measurement strategy. Value Health 2007; 10 Suppl. 2: S76-85.
22. Anker SD, Agewall S, Borggrefe M et al. The importance of patient-reported outcomes: a call for their comprehensive integration in cardiovascular clinical trials. Eur Heart J 2014; 35: 2001-9.
23. Giesinger K, Hamilton DF, Jost B, Holzner B, Giesinger JM. Comparative responsiveness of outcome measures for total knee arthroplasty. Osteoarthr Cartil 2014; 22: 184-9.
24. Davidson M, Keating J. Patient-reported outcome measures (PROMs): how should I interpret reports of measurement properties? A practical guide for clinicians and researchers who are not biostatisticians. Br J Sports Med 2014; 48: 792-6.
25. Nilsson E, Wenemark M, Bendtsen P, Kristenson M. Respondent satisfaction regarding SF-36 and EQ-5D, and patients' perspectives concerning health outcome assessment within routine health care. Qual Life Res 2007; 16: 1647-54.
26. Staniszewska S, Haywood KL, Brett J, Tutton L. Patient and public involvement in patient-reported outcome measures: evolution not revolution. Patient 2012; 5: 79-87.
27. Macefield RC, Jacobs M, Korfage IJ et al. Developing core outcomes sets: methods for identifying and including patient-reported outcomes (PROs). Trials 2014; 15: 49.
28. Hudak PL, Wright JG. The characteristics of patient satisfaction measures. Spine 2000; 25: 3167-77.
29. Revicki DA. Patient assessment of treatment satisfaction: methods and practical issues. Gut 2004; 53 (Suppl. 4): iv40-4.
30. Jenkinson C, Coulter A, Bruster S, Richards N, Chandola T. Patients' experiences and satisfaction with health care: results of a questionnaire study of specific aspects of care. Qual Saf Health Care 2002; 11: 335-9.
31. Haas M. The relationship between expectations and satisfaction: a qualitative study of patients' experiences of surgery for gynaecological cancer. Health Exp 1999; 2: 51-60.
32. Lloyd H, Jenkinson C, Hadi M, Gibbons E, Fitzpatrick R. Patient reports of the outcomes of treatment: a structured review of approaches. Health Qual Life Outcomes 2014; 12: 5.
33. Baumann C, Rat AC, Osnowycz G, Mainard D, Cuny C, Guillemin F. Satisfaction with care after total hip or knee replacement predicts self-perceived health status after surgery. BMC Musculoskel Dis 2009; 10: 150.
34. Black N, Varaganum M, Hutchings A. Relationship between patient reported experience (PREMs) and patient reported outcomes (PROMs) in elective surgery. BMJ Quality & Safety 2014; 23: 534-42.
35. Howard PB, Rayens MK, El-Mallakh P, Clark JJ. Predictors of satisfaction among adult recipients of Medicaid mental health services. Arch Psychiatr Nurs 2007; 21: 257-69.
36. Lis CG, Rodeghier M, Grutsch JF, Gupta D. Distribution and determinants of patient satisfaction in oncology with a focus on health related quality of life. BMC Health Services Res 2009; 9: 190.
37. Wildes KA, Miller AR, de Majors SS, Otto PM, Ramirez AG. The satisfaction of Latina breast cancer survivors with their healthcare and health-related quality of life. J Women's Health 2011; 20: 1065-74.
38. Chow A, Mayer EK, Darzi AW, Athanasiou T. Patient-reported outcome measures: the importance of patient satisfaction in surgery. Surgery 2009; 146: 435-43.
39. Boyce MB, Browne JP. Does providing feedback on patient-reported outcomes to healthcare professionals result in better outcomes for patients? A systematic review. Qual Life Res 2013; 22: 2265-78.
40. Chen J, Ou L, Hollis SJ. A systematic review of the impact of routine collection of patient reported outcome measures on patients, providers and health organisations in an oncologic setting. BMC Health Services Res 2013; 13: 211.
41. Greenhalgh J, Abhyankar P, McCluskey S, Takeuchi E, Velikova G. How do doctors refer to patient-reported outcome measures (PROMS) in oncology consultations? Qual Life Res 2013; 22: 939-50.
42. Kotronoulas G, Kearney N, Maguire R et al. What is the value of the routine use of patient-reported outcome measures toward improvement of patient outcomes, processes of care, and health service outcomes in cancer care? A systematic review of controlled trials. J Clin Oncol 2014; 32: 1480-501.
43. Smith PC, Street AD. On the uses of routine patient-reported health outcome data. Health Econ 2013; 22: 119-31.
44. Cella D. Quality of life in patients with metastatic renal cell carcinoma: the importance of patient-reported outcomes. Cancer Treat Rev 2009; 35: 733-7.
45. Efficace F, Kemmler G, Vignetti M, Mandelli F, Molica S, Holzner B. Health-related quality of life assessment and reported outcomes in leukaemia randomised controlled trials - a systematic review to evaluate the added value in supporting clinical decision making. Eur J Cancer 2008; 44: 1497-506.
46. Espallargues M, Valderas JM, Alonso J. Provision of feedback on perceived health status to health care professionals: a systematic review of its impact. Med Care 2000; 38: 175-86.
47. Gilbody SM, House AO, Sheldon TA. Outcomes research in mental health. Systematic review. Br J Psychiatry 2002; 181: 8-16.
48. Gutteling JJ, Darlington AS, Janssen HL, Duivenvoorden HJ, Busschbach JJ, de Man RA. Effectiveness of health-related quality-of-life measurement in clinical practice: a prospective, randomized controlled trial in patients with chronic liver disease and their physicians. Qual Life Res 2008; 17: 195-205.
49. Higginson IJ, Carr AJ. Measuring quality of life: using quality of life measures in the clinical setting. BMJ 2001; 322: 1297-300.
50. Luckett T, Butow PN, King MT. Improving patient outcomes through the routine use of patient-reported data in cancer clinics: future directions. Psycho-Oncology 2009; 18: 1129-38.
51. Marshall S, Haywood K, Fitzpatrick R. Impact of patient-reported outcome measures on routine practice: a structured review. J Eval Clin Pract 2006; 12: 559-68.
52. Snyder CF, Blackford AL, Aaronson NK et al. Can patient-reported outcome measures identify cancer patients' most bothersome issues? J Clin Oncol 2011; 29: 1216-20.
53. Velikova G, Keding A, Harley C et al. Patients report improvements in continuity of care when quality of life assessments are used routinely in oncology practice: secondary outcomes of a randomised controlled trial. Eur J Cancer 2010; 46: 2381-8.
54. Wu WK, Sause RB, Zacker C. Use of health-related quality of life information in managed care formulary decision-making. Res Social Adm Pharm 2005; 1: 579-98.
55. Kettis-Lindblad A, Ring L, Widmark E, Bendtsen P, Glimelius B. Patients'and doctors' views of using the schedule for individual quality of life in clinical practice. J Support Oncol 2007; 5: 281-7.
56. Carlier IV, Meuldijk D, Van Vliet IM, Van Fenema E, Van der Wee NJ, Zitman FG. Routine outcome monitoring and feedback on physical or mental health status: evidence and theory. J Eval Clin Pract 2012; 18: 104-10.
57. Valderas JM, Fitzpatrick R, Roland M. Using health status to measure NHS performance: another step into the dark for the health reform in England. BMJ Quality & Safety 2012; 21: 352-3.
58. Black N. Patient reported outcome measures could help transform healthcare. BMJ 2013; 346: f167.
59. Faden R, Leplege A. Assessing quality of life. Moral implications for clinical practice. Med Care 1992; 30: MS166-75.
60. Rosenbloom SK, Victorson DE, Hahn EA, Peterman AH, Cella D. Assessment is not enough: a randomized controlled trial of the effects of HRQL assessment on quality of life and satisfaction in oncology clinical practice. Psycho-oncology 2007; 16: 1069-79.
61. Adami HO, Hernan MA. Learning how to improve healthcare delivery: the Swedish Quality Registers. J Intern Med 2015; 277: 87-9.
62. Emilsson L, Lindahl B, Koster M, Lambe M, Ludvigsson JF. Review of 103 Swedish Healthcare Quality Registries. J Intern Med 2015; 277: 94-136.
63. Osooli M, Berntorp E. Inhibitors in haemophilia: what have we learned from registries? A systematic review. J Intern Med 2015; 277: 1-15.
64. Rolfson O, Karrholm J, Dahlberg LE, Garellick G. Patient-reported outcomes in the Swedish Hip Arthroplasty Register: results of a nationwide prospective observational study. J Bone Joint Surg British 2011; 93: 867-75.
65. Greene ME, Rolfson O, Nemes S, Gordon M, Malchau H, Garellick G. Education attainment is associated with patient-reported outcomes: findings from the Swedish Hip Arthroplasty Register. Clin Orthop Relat Res 2014; 472: 1868-76.
66. Lindgren JV, Wretenberg P, Karrholm J, Garellick G, Rolfson O. Patient-reported outcome is influenced by surgical approach in total hip replacement: a study of the Swedish Hip Arthroplasty Register including 42, 233 patients. Bone & Joint J 2014; 96-B: 590-6.
67. Lundstrom M, Stenevi U. Analyzing patient-reported outcomes to improve cataract care. Optometry Vision Sci 2013; 90: 754-9.
68. Mollazadegan K, Lundstrom M. A study of the correlation between patient-reported outcomes and clinical outcomes after cataract surgery in ophthalmic clinics. Acta Ophthalmol 2015; 93: 293-8.
69. Berkius J, Engerstrom L, Orwelius L et al. A prospective longitudinal multicentre study of health related quality of life in ICU survivors with COPD. Crit Care 2013; 17: R211.
70. Rolfson O, Dahlberg LE, Nilsson JA, Malchau H, Garellick G. Variables determining outcome in total hip replacement surgery. J Bone Joint Surg British 2009; 91: 157-61.
71. Rolfson O, Rothwell A, Sedrakyan A et al. Use of patient-reported outcomes in the context of different levels of data. J Bone Joint Surg Am 2011; 93(Suppl. 3): 66-71.
72. Fritzell P, Knutsson B, Sanden B, Stromqvist B, Hagg O. Recurrent versus primary lumbar disc herniation surgery: patient-reported outcomes in the Swedish Spine Register Swespine. Clin Orthop Relat Res 2015; 473: 1978-84.
73. Franneby U, Sandblom G, Nyren O, Nordin P, Gunnarsson U. Self-reported adverse events after groin hernia repair, a study based on a national register. Value Health 2008; 11: 927-32.
74. Lundstrom M, Pesudovs K. Catquest-9SF patient outcomes questionnaire: nine-item short-form Rasch-scaled revision of the Catquest questionnaire. J Cataract Refract Surg 2009; 35: 504-13.
75. Pakbaz M, Mogren I, Lofgren M. Outcomes of vaginal hysterectomy for uterovaginal prolapse: a population-based, retrospective, cross-sectional study of patient perceptions of results including sexual activity, urinary symptoms, and provided care. BMC Women's Health 2009; 9: 9.
76. Asplund K, Hulter Asberg K, Appelros P et al. The Riks-Stroke story: building a sustainable national register for quality assessment of stroke care. Int J Stroke 2011; 6: 99-108.
77. Eriksson M, Glader EL, Norrving B, Terent A, Stegmayr B. Sex differences in stroke care and outcome in the Swedish national quality register for stroke care. Stroke 2009; 40: 909-14.
78. Glader EL, Stegmayr B, Asplund K. Poststroke fatigue: a 2-year follow-up study of stroke patients in Sweden. Stroke 2002; 33: 1327-33.
79. Glader EL, Stegmayr B, Norrving B et al. Sex differences in management and outcome after stroke: a Swedish national perspective. Stroke 2003; 34: 1970-5.
80. Norlin JM, Steen Carlsson K, Persson U, Schmitt-Egenolf M. Switch to biological agent in psoriasis significantly improved clinical and patient-reported outcomes in real-world practice. Dermatology 2012; 225: 326-32.
81. Ageberg E, Forssblad M, Herbertsson P, Roos EM. Sex differences in patient-reported outcomes after anterior cruciate ligament reconstruction: data from the Swedish knee ligament register. Am J Sports Med 2010; 38: 1334-42.
82. Ahlden M, Samuelsson K, Sernert N, Forssblad M, Karlsson J, Kartus J. The Swedish National Anterior Cruciate Ligament Register: a report on baseline variables and outcomes of surgery for almost 18, 000 patients. Am J Sports Med 2012; 40: 2230-5.
83. Barenius B, Forssblad M, Engstrom B, Eriksson K. Functional recovery after anterior cruciate ligament reconstruction, a study of health-related quality of life based on the Swedish National Knee Ligament Register. Knee Surg Sports Traumatol Arthros 2013; 21: 914-27.
84. Hultcrantz E, Ericsson E, Hemlin C et al. Paradigm shift in Sweden from tonsillectomy to tonsillotomy for children with upper airway obstructive symptoms due to tonsillar hypertrophy. Euro Arch of Oto-Rhino-Laryngol 2013; 270: 2531-6.