Skip to main content

Advertisement

SpringerLink
Log in

How is quality of life defined and assessed in published research?

  • Review
  • Published:
Quality of Life Research Aims and scope Submit manuscript

Abstract

Purpose

To ensure clarity in communication in the field of quality of life research, and meaningful use of ‘quality of life’ as a research outcome, requires two things: awareness that there is a range of conceptualisations and definitions of ‘quality of life’, and for any particular study, consistency between the way the term is defined and operationalised in that setting. We aimed to identify how frequently research articles described (HR)QOL as a construct of interest, how frequently they referred to “patient-reported outcome (measures)”, which patient-reported outcome measures were used, and how (HR)QOL was defined.

Methods

We reviewed all Quality of Life Research articles published in 2017 and recorded whether they described health-related quality of life or quality of life as constructs of interest, and/or mentioned the term(s) patient-reported outcome (measures). We recorded definitions of (HR)QOL stated and questionnaires used. We classified articles according to constructs assessed and instruments used, and examined whether articles citing the same definition used the same questionnaires.

Results

We reviewed 300 articles; 65% stated that (HR)QOL was a construct of interest, 27% mentioned patient-reported outcome (measures), and 20% mentioned neither. Fifty-one articles provided definitions of (HR)QOL, citing 66 sources, with 11 definitions cited more than once. PROMIS, SF, EQ-5D, and EORTC instruments were the most commonly used. The only definition and questionnaire consistently used together were the WHO definitions/instruments.

Conclusion

These results demonstrate considerable heterogeneity in the definition and operationalisation of (HR)QOL, between and within studies. This limits meaningful interpretation of (HR)QOL scores and complicates literature searches. Investigators should define constructs and select instruments aligned with their definitions.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

References

  1. Ferrans, C. E. (2005). Definitions and conceptual models of quality of life. In J. Lipscomb, C. C. Gotay, & C. Snyder (Eds.), Outcomes Research in Cancer: Measures, Methods and Applications. (pp. 14–30). Cambridge: Cambridge University Press.

    Google Scholar 

  2. Costa, D. S. J. (2015). Reflective, causal, and composite indicators of quality of life: A conceptual or an empirical distinction? Quality of Life Research, 24(9), 2057–2065.

    Article  Google Scholar 

  3. Cella, D. F., Tulsky, D. S., Gray, G., Sarafian, B., Linn, E., Bonomi, A., et al. (1993). The functional assessment of cancer therapy scale: Development and validation of the general measure. Journal of Clinical Oncology, 11(3), 570–579.

    Article  CAS  Google Scholar 

  4. Wilson, I. B., & Cleary, P. D. (1995). Linking clinical variables with health-related quality of life: a conceptual model of patient outcomes. Journal of American Medical Association, 273(1), 59–65.

    Article  CAS  Google Scholar 

  5. Aaronson, N. K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N. J., et al. (1993). The european organisation for research and treatment of cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. Journal of the National Cancer Institute, 85(5), 365–376.

    Article  CAS  Google Scholar 

  6. Feinstein, A. R. (1987). Clinimetrics. . New Haven: Yale University Press.

    Book  Google Scholar 

  7. Food and Drug Administration (2009). Guidance for Industry on Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims. Federal Register, 74(65132-3).

  8. Patrick, D. L., Burke, L. B., Powers, J. H., Scott, J. A., Rock, E. P., Dawisha, S., et al. (2007). Patient-reported outcomes to support medical product labeling claims: FDA perspective. Value in Health, 10, S125–S137.

    Article  Google Scholar 

  9. Patrick, D. L., & Erickson, P. (1993). Health Status and Health Policy. . Oxford: Oxford University Press.

    Google Scholar 

  10. Cella, D. F. (1995). Measuring quality of life in palliative care. Seminars in Oncology, 22, 73–81.

    CAS  PubMed  Google Scholar 

  11. Mayo, N. E. (2015). ISOQOL Dictionary of Quality of Life and Health Outcomes Measurement. . Milwaukee: International Society for Quality of Life Research.

    Google Scholar 

  12. Wang, M., Chen, R. C., Usinger, D. S., & Reeve, B. B. (2017). Evaluating measurement invariance across assessment modes of phone interview and computer self-administered survey for the PROMIS measures in a population-based cohort of localized prostate cancer survivors. Quality of Life Research, 26(11), 2973–2985. https://doi.org/10.1007/s11136-017-1640-3.

    Article  PubMed  PubMed Central  Google Scholar 

  13. Tobiasz-Adamczyk, B., Galas, A., Zawisza, K., Chatterji, S., Haro, J. M., Ayuso-Mateos, J. L., et al. (2017). Gender-related differences in the multi-pathway effect of social determinants on quality of life in older age-the COURAGE in Europe project. Quality of Life Research, 26(7), 1865–1878. https://doi.org/10.1007/s11136-017-1530-8.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Vanleerberghe, P., De Witte, N., Claes, C., Schalock, R. L., & Verte, D. (2017). The quality of life of older people aging in place: a literature review. Quality of Life Research, 26(11), 2899–2907. https://doi.org/10.1007/s11136-017-1651-0.

    Article  PubMed  Google Scholar 

  15. Henchoz, Y., Botrugno, F., Cornaz, S., Bula, C., Charef, S., Santos-Eggimann, B., et al. (2017). Determinants of quality of life in community-dwelling older adults: comparing three cut-offs on the excellent-to-poor spectrum. Quality of Life Research, 26(2), 283–289. https://doi.org/10.1007/s11136-016-1394-3.

    Article  PubMed  Google Scholar 

  16. Daigre, C., Grau-Lopez, L., Rodriguez-Cintas, L., Ros-Cucurull, E., Sorribes-Puertas, M., Esculies, O., et al. (2017). The role of dual diagnosis in health-related quality of life among treatment-seeking patients in Spain. Quality of Life Research, 26(12), 3201–3209. https://doi.org/10.1007/s11136-017-1668-4.

    Article  PubMed  Google Scholar 

  17. Locker, D., & Allen, F. (2007). What do measures of ‘oral healthrelated quality of life’ measure? Community Dentistry and Oral Epidemiology, 35(6), 401–411.

    Article  Google Scholar 

  18. WHOQoL Group. (1993). Study protocol for the World Health Organization project to develop a Quality of Life assessment instrument (WHOQOL). Quality of Life Research, 2(2), 153–159.

    Article  Google Scholar 

  19. WHOQOL Group. (1994). Development of the WHOQOL: Rationale and current status. International Journal of Mental Health, 23(3), 24–56.

    Article  Google Scholar 

  20. WHOQOL Group. (1995). The World Health Organization Quality of Life assessment (WHOQOL): Position paper from the World Health Organization. Social Science and Medicine, 41(10), 1403–1409.

    Article  Google Scholar 

  21. Harper, A., Power, M., & The WHOQOL Group. (1998). Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological Medicine, 28(3), 551–558.

    Article  Google Scholar 

  22. Centres for Disease Control and Prevention (2015). Health-related quality of life (HRQOL): HRQOL Concepts. http://www.cdc.gov/hrqol/concept.htm. Accessed 08 June 2015.

  23. Cummins, R. A. (2005). Moving from the quality of life concept to a theory. Journal of Intellectual Disability Research, 49(10), 699–706.

    Article  CAS  Google Scholar 

  24. Hennessy, C. H., Moriarty, D. G., Zack, M. M., Scherr, P. A., & Brackbill, R. (1994). Measuring health-related quality of life for public health surveillance. Public Health Reports, 109(5), 665–672.

    CAS  PubMed  PubMed Central  Google Scholar 

  25. Ravens-Sieberer, U., Herdman, M., Devine, J., Otto, C., Bullinger, M., Rose, M., et al. (2014). The European KIDSCREEN approach to measure quality of life and well-being in children: Development, current application, and future advances. Quality of Life Research, 23(3), 791–803.

    Article  Google Scholar 

  26. Schipper, H., Clinch, J. J., & Olweny, C. L. M. (1996). Quality of life studies: Definitions and conceptual issues. In B. Spilker (Ed.), Quality of life and pharmacoeconomics in clinical trials (2nd ed.). Philadelphia: Lippincott-Raven Publishers.

  27. Matza, L. S., Swensen, A. R., Flood, E. M., Secnik, K., & Leidy, N. K. (2004). Assessment of health-related quality of life in children: A review of conceptual, methodological, and regulatory issues. Value in Health, 7(1), 79–92.

    Article  Google Scholar 

  28. World Health Organization (1946). WHO definition of health. http://www.who.int/bulletin/archives/80%2812%29981.pdf. Accessed Accessed 21 Aug 2015.

  29. World Health Organization (1948). World health organization constitution. Basic Documents, 1.

  30. WHOQOL Group. (1998). The World Health Organization Quality of Life Assessment (WHOQOL): Development and general psychometric properties. Social Science & Medicine, 46(12), 1569–1585.

    Article  Google Scholar 

  31. Wong, C. C. Y., & Lu, Q. (2017). Match between culture and social support: Acculturation moderates the relationship between social support and well-being of Chinese American breast cancer survivors. Quality of Life Research, 26(1), 73–84.

    Article  Google Scholar 

  32. Ratcliffe, J., Lancsar, E., Flint, T., Kaambwa, B., Walker, R., Lewin, G., et al. (2017). Does one size fit all? Assessing the preferences of older and younger people for attributes of quality of life. Quality of Life Research, 26(2), 299–309. https://doi.org/10.1007/s11136-016-1391-6.

    Article  PubMed  Google Scholar 

  33. Litzelman, K., Tesauro, G., & Ferrer, R. (2017). Internal resources among informal caregivers: trajectories and associations with well-being. Quality of Life Research, 26(12), 3239–3250. https://doi.org/10.1007/s11136-017-1647-9.

    Article  PubMed  PubMed Central  Google Scholar 

  34. Al Sayah, F., Qiu, W., Xie, F., & Johnson, J. A. (2017). Comparative performance of the EQ-5D-5L and SF-6D index scores in adults with type 2 diabetes. Quality of Life Research, 26(8), 2057–2066. https://doi.org/10.1007/s11136-017-1559-8.

    Article  Google Scholar 

  35. Feng, Y., Herdman, M., van Nooten, F., Cleeland, C., Parkin, D., Ikeda, S., et al. (2017). An exploration of differences between Japan and two European countries in the self-reporting and valuation of pain and discomfort on the EQ-5D. Quality of Life Research, 26(8), 2067–2078. https://doi.org/10.1007/s11136-017-1541-5.

    Article  PubMed  PubMed Central  Google Scholar 

  36. Konnopka, A., & Koenig, H. H. (2017). The “no problems”-problem: an empirical analysis of ceiling effects on the EQ-5D 5L. Quality of Life Research, 26(8), 2079–2084. https://doi.org/10.1007/s11136-017-1551-3.

    Article  PubMed  Google Scholar 

  37. Shiroiwa, T., Fukuda, T., Shimozuma, K., Mouri, M., Hagiwara, Y., Doihara, H., et al. (2017). Long-term health status as measured by EQ-5D among patients with metastatic breast cancer: comparison of first-line oral S-1 and taxane therapies in the randomized phase III SELECT BC trial. [Clinical Trial, Phase III Randomized Controlled Trial]. Quality of Life Research, 26(2), 445–453. https://doi.org/10.1007/s11136-016-1388-1.

    Article  CAS  PubMed  Google Scholar 

  38. van den Hoek, D. J., Miller, C. T., Fraser, S. F., Selig, S. E., & Dixon, J. B. (2017). Does exercise training augment improvements in quality of life induced by energy restriction for obese populations? A systematic review. [Review Systematic Review]. Quality of Life Research, 26(10), 2593–2605. https://doi.org/10.1007/s11136-017-1602-9.

    Article  PubMed  Google Scholar 

  39. Merz, E. L., Malcarne, V. L., Roesch, S. C., Nair, D. K., Salazar, G., Assassi, S., et al. (2017). Longitudinal patterns of pain in patients with diffuse and limited systemic sclerosis: integrating medical, psychological, and social characteristics. Quality of Life Research, 26(1), 85–94. https://doi.org/10.1007/s11136-016-1370-y.

    Article  PubMed  Google Scholar 

  40. Tsai, W., & Lu, Q. (2017). Acculturation matters in the relation between ambivalence over emotional expressions and well-being among Chinese American breast cancer survivors. Quality of Life Research, 26(10), 2755–2762. https://doi.org/10.1007/s11136-017-1618-1.

    Article  PubMed  Google Scholar 

  41. Fonvig, C. E., Hamann, S. A., Nielsen, T. R. H., Johansen, M. O., Gronbaek, H. N., Mollerup, P. M., et al. (2017). Subjective evaluation of psychosocial well-being in children and youths with overweight or obesity: the impact of multidisciplinary obesity treatment. Quality of Life Research, 26(12), 3279–3288. https://doi.org/10.1007/s11136-017-1667-5.

    Article  PubMed  Google Scholar 

  42. Davis, J. C., Best, J. R., Dian, L., Khan, K. M., Hsu, C. L., Chan, W., et al. (2017). Are the EQ-5D-3L and the ICECAP-O responsive among older adults with impaired mobility? Evidence from the Vancouver Falls Prevention Cohort Study. [Validation Studies]. Quality of Life Research, 26(3), 737–747. https://doi.org/10.1007/s11136-016-1487-z.

    Article  PubMed  Google Scholar 

  43. Roydhouse, J. K., & Wilson, I. B. (2017). Systematic review of caregiver responses for patient health-related quality of life in adult cancer care. [Review Systematic Review]. Quality of Life Research, 26(8), 1925–1954. https://doi.org/10.1007/s11136-017-1540-6.

    Article  PubMed  PubMed Central  Google Scholar 

  44. Lemanska, A., Chen, T., Dearnaley, D. P., Jena, R., Sydes, M. R., & Faithfull, S. (2017). Symptom clusters for revising scale membership in the analysis of prostate cancer patient reported outcome measures: a secondary data analysis of the Medical Research Council RT01 trial (ISCRTN47772397). Quality of Life Research, 26(8), 2103–2116. https://doi.org/10.1007/s11136-017-1548-y.

    Article  PubMed  PubMed Central  Google Scholar 

  45. Laporta-Hoyos, O., Ballester-Plane, J., Poo, P., Macaya, A., Melendez-Plumed, M., Vazquez, E., et al. (2017). Proxy-reported quality of life in adolescents and adults with dyskinetic cerebral palsy is associated with executive functions and cortical thickness. Quality of Life Research, 26(5), 1209–1222. https://doi.org/10.1007/s11136-016-1433-0.

    Article  CAS  PubMed  Google Scholar 

  46. Wockel, A., Schwentner, L., Krockenberger, M., Kreienberg, R., Janni, W., Wischnewsky, M., et al. (2017). Predictors of the course of quality of life during therapy in women with primary breast cancer. Quality of Life Research, 26(8), 2201–2208. https://doi.org/10.1007/s11136-017-1570-0.

    Article  PubMed  Google Scholar 

  47. Park, S. (2017). Pathways linking obesity to health-related quality of life. Quality of Life Research, 26(8), 2209–2218. https://doi.org/10.1007/s11136-017-1565-x.

    Article  PubMed  Google Scholar 

  48. Kratz, A. L., Kalpakjian, C. Z., & Hanks, R. A. (2017). Are intensive data collection methods in pain research feasible in those with physical disability? A study in persons with chronic pain and spinal cord injury. Quality of Life Research, 26(3), 587–600. https://doi.org/10.1007/s11136-016-1494-0.

    Article  CAS  PubMed  Google Scholar 

  49. Busija, L., Tan, J., & Sanders, K. M. (2017). Associations between illness duration and health-related quality of life in specified mental and physical chronic health conditions: results from a population-based survey. Quality of Life Research, 26(10), 2671–2681. https://doi.org/10.1007/s11136-017-1592-7.

    Article  PubMed  Google Scholar 

  50. Cappelleri, J. C., Koduru, V., Bienen, E. J., & Sadosky, A. (2017). Mapping painDETECT, a neuropathic pain screening tool, to the EuroQol (EQ-5D-3L). Quality of Life Research, 26(2), 467–477. https://doi.org/10.1007/s11136-016-1379-2.

    Article  PubMed  Google Scholar 

  51. Eton, D. T., Yost, K. J., Lai, J. S., Ridgeway, J. L., Egginton, J. S., Rosedahl, J. K., et al. (2017). Development and validation of the Patient Experience with Treatment and Self-management (PETS): a patient-reported measure of treatment burden. Quality of Life Research, 26(2), 489–503. https://doi.org/10.1007/s11136-016-1397-0.

    Article  PubMed  Google Scholar 

  52. Moen, V. P., Drageset, J., Eide, G. E., Klokkerud, M., & Gjesdal, S. (2017). Validation of world health organization assessment schedule 2.0 in specialized somatic rehabilitation services in Norway. Quality of Life Research, 26(2), 505–514. https://doi.org/10.1007/s11136-016-1384-5.

    Article  PubMed  Google Scholar 

  53. Goodman, M. L., Johnson, T. M., Guillot-Wright, S., Porter, K. A., Keiser, P. H., & Gitari, S. (2017). How do Kenyan orphan girls experience less meaningful lives and how much does it matter for “health”? Quality of Life Research, 26(6), 1551–1559. https://doi.org/10.1007/s11136-017-1511-y.

    Article  PubMed  Google Scholar 

  54. Sherwin, L. B., Leary, E., & Henderson, W. A. (2017). The association of catastrophizing with quality-of-life outcomes in patients with irritable bowel syndrome. Quality of Life Research, 26(8), 2161–2170. https://doi.org/10.1007/s11136-017-1554-0.

    Article  PubMed  PubMed Central  Google Scholar 

  55. Liang, J. W., Cheung, Y. K., Willey, J. Z., Moon, Y. P., Sacco, R. L., Elkind, M. S. V., et al. (2017). Quality of life independently predicts long-term mortality but not vascular events: the Northern Manhattan Study. Quality of Life Research, 26(8), 2219–2228. https://doi.org/10.1007/s11136-017-1567-8.

    Article  PubMed  PubMed Central  Google Scholar 

  56. Niska, J. R., Halyard, M. Y., Tan, A. D., Atherton, P. J., Patel, S. H., & Sloan, J. A. (2017). Electronic patient-reported outcomes and toxicities during radiotherapy for head-and-neck cancer. Quality of Life Research, 26(7), 1721–1731. https://doi.org/10.1007/s11136-017-1528-2.

    Article  PubMed  PubMed Central  Google Scholar 

  57. Wilson, S. J., Davie, G., & Derrett, S. (2017). Two years after injury: prevalence and early post-injury predictors of ongoing injury-related problems. Quality of Life Research, 26(7), 1831–1838. https://doi.org/10.1007/s11136-017-1521-9.

    Article  PubMed  Google Scholar 

  58. Kronzer, V. L., Jerry, M. R., Ben Abdallah, A., Wildes, T. S., McKinnon, S. L., Sharma, A., et al. (2017). Changes in quality of life after elective surgery: an observational study comparing two measures. Quality of Life Research, 26(8), 2093–2102. https://doi.org/10.1007/s11136-017-1560-2.

    Article  PubMed  PubMed Central  Google Scholar 

  59. Obbarius, A., van Maasakkers, L., Baer, L., Clark, D. M., Crocker, A. G., de Beurs, E., et al. (2017). Standardization of health outcomes assessment for depression and anxiety: Recommendations from the ICHOM Depression and Anxiety Working Group. Quality of Life Research, 26(12), 3211–3225. https://doi.org/10.1007/s11136-017-1659-5.

    Article  PubMed  PubMed Central  Google Scholar 

  60. Gandhi, M., Tan, R. S., Ng, R., Choo, S. P., Chia, W. K., Toh, C. K., et al. (2017). Comparison of health state values derived from patients and individuals from the general population. Quality of Life Research, 26(12), 3353–3363. https://doi.org/10.1007/s11136-017-1683-5.

    Article  PubMed  Google Scholar 

  61. Kim, S. H., Lee, S. I., & Jo, M. W. (2017). Feasibility, comparability, and reliability of the standard gamble compared with the rating scale and time trade-off techniques in Korean population. Quality of Life Research, 26(12), 3387–3397. https://doi.org/10.1007/s11136-017-1676-4.

    Article  PubMed  Google Scholar 

  62. Poor, A. K., Rencz, F., Brodszky, V., Gulacsi, L., Beretzky, Z., Hidvegi, B., et al. (2017). Measurement properties of the EQ-5D-5L compared to the EQ-5D-3L in psoriasis patients. Quality of Life Research, 26(12), 3409–3419. https://doi.org/10.1007/s11136-017-1699-x.

    Article  PubMed  Google Scholar 

  63. Kularatna, S., Byrnes, J., Chan, Y. K., Ski, C. F., Carrington, M., Thompson, D., et al. (2017). Comparison of the EQ-5D-3L and the SF-6D (SF-12) contemporaneous utility scores in patients with cardiovascular disease. Quality of Life Research, 26(12), 3399–3408. https://doi.org/10.1007/s11136-017-1666-6.

    Article  PubMed  Google Scholar 

  64. Gandhi, M., Xu, Y., Luo, N., & Cheung, Y. B. (2017). Sample size determination for EQ-5D-5L value set studies. Quality of Life Research, 26(12), 3365–3376. https://doi.org/10.1007/s11136-017-1685-3.

    Article  PubMed  Google Scholar 

  65. Witjes, S., van Geenen, R. C., Koenraadt, K. L., van der Hart, C. P., Blankevoort, L., Kerkhoffs, G. M., et al. (2017). Expectations of younger patients concerning activities after knee arthroplasty: Are we asking the right questions? Quality of Life Research, 26(2), 403–417. https://doi.org/10.1007/s11136-016-1380-9.

    Article  PubMed  Google Scholar 

  66. Hakimi, Z., Herdman, M., Pavesi, M., Devlin, N., Nazir, J., Hoyle, C., et al. (2017). Using EQ-5D-3L and OAB-5D to assess changes in the health-related quality of life of men with lower urinary tract symptoms associated with benign prostatic hyperplasia. [Clinical Trial, Phase III Multicenter Study Randomized Controlled Trial]. Quality of Life Research, 26(5), 1187–1195. https://doi.org/10.1007/s11136-016-1460-x.

    Article  PubMed  Google Scholar 

  67. Al Sayah, F., Johnson, J. A., Ohinmaa, A., Xie, F., Bansback, N., & Canadian, E. Q. D. L. V. S. G. (2017). Health literacy and logical inconsistencies in valuations of hypothetical health states: results from the Canadian EQ-5D-5L valuation study. Quality of Life Research, 26(6), 1483–1492. https://doi.org/10.1007/s11136-016-1495-z.

    Article  PubMed  Google Scholar 

  68. Gong, X. H., Wang, J. W., Li, J., Chen, X. F., Sun, L., Yuan, Z. P., et al. (2017). Physical exercise, vegetable and fruit intake and health-related quality of life in Chinese breast cancer survivors: a cross-sectional study. Quality of Life Research, 26(6), 1541–1550. https://doi.org/10.1007/s11136-017-1496-6.

    Article  PubMed  Google Scholar 

  69. Weinstein, A. A., Diao, G., Baghi, H., Escheik, C., Gerber, L. H., & Younossi, Z. M. (2017). Demonstration of two types of fatigue in subjects with chronic liver disease using factor analysis. Quality of Life Research, 26(7), 1777–1784. https://doi.org/10.1007/s11136-017-1516-6.

    Article  PubMed  Google Scholar 

  70. McHorney, C. A., Ware, J. E., & Raczek, A. E. (1993). The MOS 36-Item short-form health survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Medical Care, 31(3), 247–263.

    Article  CAS  Google Scholar 

  71. Spitzer, W. O. (1987). State of science 1986: quality of life and functional status as target variables for research. Journal of Chronic Diseases, 40(6), 465–471.

    Article  CAS  Google Scholar 

  72. Patrick, D. L., & Bergner, M. (1990). Measurement of health status in the 1990s. Annual Review of Public Health, 11, 165–183.

    Article  CAS  Google Scholar 

  73. Calvert, M., Kyte, D., Mercieca-Bebber, R., Slade, A., Chan, A. W., King, M. T., et al. (2018). Guidelines for inclusion of patient-reported outcomes in clinical trial protocols: the SPIRIT-PRO extension. Journal of the American Medical Association, 319(5), 483–494.

    Article  Google Scholar 

  74. Nasvall, P., Dahlstrand, U., Lowenmark, T., Rutegard, J., Gunnarsson, U., & Strigard, K. (2017). Quality of life in patients with a permanent stoma after rectal cancer surgery. Quality of Life Research, 26(1), 55–64. https://doi.org/10.1007/s11136-016-1367-6.

    Article  PubMed  Google Scholar 

  75. Haraldstad, K., Wahl, A., Andenæs, R., Andersen, J. R., Andersen, M. H., Beisland, E., et al. (in press). A systematic review of quality of life research in medicine and health sciences. Quality of Life Research.

  76. Snyder, C., Watson, M. E., Jackson, J. D., Cella, D., Halyard, M. Y., & Mayo/FDA Patient-Reported Outcomes Consensus Meeting Group. (2007). Patient-reported outcome instrument selection: designing a measurement strategy. Value in Health, 10, S76–S85.

    Article  Google Scholar 

  77. Calvert, M., Brundage, M., Jacobsen, P. B., Schünemann, H. J., & Efficace, F. (2013). The CONSORT Patient-Reported Outcome (PRO) extension: implications for clinical trials and practice. Health and Quality of Life Outcomes, 11.

Download references

Funding

This study received no funding.

Author information

Authors and Affiliations

  1. Pain Management Research Institute, Royal North Shore Hospital, Reserve Road, St Leonards, NSW, 2065, Australia

    Daniel S. J. Costa

  2. Faculty of Science, School of Psychology, University of Sydney, Sydney, NSW, Australia

    Daniel S. J. Costa, Rebecca Mercieca-Bebber, Claudia Rutherford, Margaret-Ann Tait & Madeleine T. King

  3. Sydney Medical School, University of Sydney, Sydney, NSW, Australia

    Daniel S. J. Costa & Rebecca Mercieca-Bebber

  4. NHMRC Clinical Trials Centre, University of Sydney, Sydney, NSW, Australia

    Rebecca Mercieca-Bebber

  5. Sydney Nursing School, Cancer Nursing Research Unit (CNRU), University of Sydney, Sydney, NSW, Australia

    Claudia Rutherford

Authors
  1. Daniel S. J. Costa
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Rebecca Mercieca-Bebber
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Claudia Rutherford
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Margaret-Ann Tait
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Madeleine T. King
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Daniel S. J. Costa.

Ethics declarations

Conflict of interest

All authors declare that they have no conflicts of interest.

Ethical approval

This article does not contain any studies with human participants performed by any of the authors.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Below is the link to the electronic supplementary material.

Supplementary file1 (XLSX 87 kb)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Costa, D.S.J., Mercieca-Bebber, R., Rutherford, C. et al. How is quality of life defined and assessed in published research?. Qual Life Res 30, 2109–2121 (2021). https://doi.org/10.1007/s11136-021-02826-0

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-021-02826-0

Keywords

Search

Navigation