Suggested reading

The literature concerned with the assessment of HRQoL for health research purposes has burgeoned in recent years and continues to grow. To help guide your reading, we have compiled a suggested reading list, grouped according to topic. Further recommendations are made within relevant FAQs. Wherever possible, we have included articles that are freely available online.

One of the two dedicated international HRQoL journals – Health and Quality of Life Outcomes – is open access. The other journal - Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation – is the journal of the International Society for Quality of Life Research and is available with an annual subscription to that organisation. Finally, the Mapi Research Trust newsletter is freely available online and includes both peer-reviewed and non-peer reviewed articles on the use of patient reported outcome measures.

General

 

Carr AJ, Higginson IJ, Robinson PG (Eds). Quality of Life. London: BMJ Books; 2003.

Provides brief, practical summaries of various aspects of the state of the art of HRQoL assessment. Includes chapters, among others, on choosing a measure, using HRQoL measures in the clinical setting and assessing HRQoL in caregivers and children. Most chapters are also available as BMJ articles.

Fayers PM, Machin D. Quality of life: The assessment, analysis and interpretation of patient-reported outcomes. 2nd Ed. John Wiley and Sons, Ltd; 2007.

Perhaps the most authoritative generalist text on HRQoL assessment, this book includes all the information on measurement principles and analysing and interpreting data that most people will need. It also includes a section dedicated to assessment of HRQoL in clinical trials. View the table of contents here.

Gotay CC. Assessing cancer-related quality of life across a spectrum of applications. Journal of the National Cancer Institute Monographs. 2004;33:126-33. http://jncimono.oxfordjournals.org/cgi/reprint/2004/33/126

A useful roundup of the current state of the art across HRQoL's full range of applications.

Lipscomb J, Gotay CC, Snyder C, (Eds). Outcomes assessment in cancer: Measures, methods, and applications. Cambridge: Cambridge University Press; 2005

Expert opinion contributed by members of the National Cancer Institute's Cancer Outcomes Measurement Working Group. See http://www.cambridge.org/uk/catalogue/catalogue.asp?isbn=0521838908 for table of contents and to order.

O'Connor R. Measuring quality of life in health. Elsevier/Churchill Livingstone; 2004.

A conjoint Associate Professor at the University of New South Wales, Rod O’Connor walks the reader through the different approaches to questionnaire development and provides a template for evaluating candidate measures. See http://www.rodoconnorassoc.com/ for more information on the book and to download working papers on issues in measuring HRQoL.

Streiner DL, Norman GR. Health Measurement Scales: a Practical Guide to their Development and Use. 3rd ed. Oxford University Press; 2003.

Widely cited as the authority on health measurement development, this book is not limited to HRQoL but is concerned with any measure of “subjective states, attitudes or non-tangible outcomes” (from the jacket). The table of contents can be viewed here.

HRQoL in Clinical Trials

 

Fairclough D. Design and Analysis of Quality of Life Studies in Clinical Trials. New York: Chapman & Hall; 2002.

A comprehensive guide to study design and protocol development and data analysis (including how to deal with missing data). Table of contents can be viewed here.

Fayers PM, Hays RD, (Eds). Assessing quality of life in clinical trials. 2nd ed. Oxford, UK University Press; 2005.

Leaders in the field contribute chapters on developing and evaluating questionnaires, adapting and using questionnaires, analysis, interpretation and topics ‘beyond clinical trials’ (including meta-analyses and utility measurement).

Fayers PM, Hopwood P, Harvey A, Girling DJ, Machin D, Stephens R. Quality of life assessment in clinical trials--guidelines and a checklist for protocol writers: the U.K. Medical Research Council experience. MRC Cancer Trials Office. European Journal of Cancer. Jan 1997;33(1):20-28.

A good source of practical advice for minimising missing data.

Spilker B (Ed). Quality of life and pharmacoeconomics in clinical trials. 2nd Ed. Philadelphia: Lippincott-Raven Publishers; 1996.

Sadly now out of press, this classic text includes chapters by most of the field leaders of the day. It may not be the best choice for newcomers to the field, however.

Sprangers MAG, Moinpour CM, Moynihan TJ, Patrick DL, Revicki DA, Clinical Significance Consensus Meeting G. Assessing meaningful change in quality of life over time: a users' guide for clinicians. Mayo Clinic Proceedings. 2002 Jun;77(6):561-71.

A useful guide to interpreting reports of change in patient HRQoL in clinical trials.

 

Au H, Ringash J, Brundage M, et al. Added value of health-related quality of life measurement in cancer clinical trials: the experience. Expert Reviews in Pharmacoeconomics Outcomes Research, 2010: 10(2) 119-128.

A review and evaluation of the value added to Phase III Clinical Trials of the National Cancer Institute of Canada Clinical Trials Group within various cancer patient populations by HRQoL outcomes.

Choosing a questionnaire

 

Bowling A. Measuring disease. A review of disease specific quality of life measurement scales. 2nd ed. Buckingham: Open University Press; 2001.

Hays RD, Anderson R, Revicki D. Psychometric considerations in evaluating health-related quality of life measures. Quality of Life Research. 1993;2:441-449.

Luckett T & King MT. Choosing patient-reported outcome measures for cancer clinical research - Practical principles and an algorithm to assist non-specialist researchers. European Journal of Cancer, 2010: 46(18): 3149-3157.

Luckett T, King MT, Butow PN, Oguchi M, Rankin N, Price MA, Hackl NA, Heading G Choosing between the EORTC QLQ-C30 and FACT-G for measuring health-related quality of life in cancer clinical research: issues, evidence and recommendations. Annals of Oncology. 2011:22(10):2179-90.

Osoba D, Aaronson N, Till JE. A practical guide for selecting quality of life measures in clinical trials and practice. In: Osoba D, editor. Effect of cancer on quality of life. Boca Raton, Florida: CRC Press; 1991. p. 89-104.

Robinson PG, Carr AJ, Higginson IJ. How to choose a quality of life measure. In: Carr AJ, Higginson IJ, Robinson PG, eds. Quality of Life. London: BMJ Books; 2003:88-100.

Scientific Advisory Committee of the Medical Outcomes Trust. Assessing health status and quality-of-life instruments: Attributes and review criteria. Quality of Life Research. 2002;11:193-205.

Measuring HRQoL in children and adolescents and young adults (AYAs)

De Civita M, Regier D, Alamgir AH, Anis AH, Fitzgerald MJ, Marra CA. Evaluating health-related quality-of-life studies in paediatric populations: some conceptual, methodological and developmental considerations and recent applications. PharmacoEconomics. 2005;23(7):659-685.

Nathan PC, Furlong W, Barr RD. Challenges to the measurement of health-related quality of life in children receiving cancer therapy. Pediatric Blood & Cancer. Sep 2004;43(3):215-223.

Di Gallo A, Felder-Puig R, Topf RJ. Quality of life from research and clinical perspectives: an example from paediatric psycho-oncology. Clin Child Psychol Psychiatry. 2007 Oct;12(4):599-610.

Wakefield CE, Patterson P, McDonald FEJ, Wilson HL, Davis E, Sansom-Daly UM. Assessment of psychosocial outcomes in adolescents and young adults with cancer: a systematic review of available instruments. Clinical Oncology in Adolescents and Young Adults. 2013:3 13–27.

Measuring the HRQoL of caregivers

 

Edwards B, Ung L. Quality of life instruments for caregivers of patients with cancer: a review of their psychometric properties. Cancer Nursing. Oct 2002;25(5):342-349.

Sulch D, Kalra L. Quality of life of caregivers. In: Carr AJ, Higginson IJ, Robinson PG, eds. Quality of Life. London: BMJ Books; 2003:31-39.

Measuring HRQoL online

PROMIS

http://www.nihpromis.org/science/publications

Analysis and interpretation of HRQoL data

 

Cella D, Hahn EA, Dineen K. Meaningful change in cancer-specific quality of life scores: differences between improvement and worsening. Quality of Life Research. 2002;11:207-221.

Guyatt G, Osoba D, Wu A, et al. Methods to explain the clinical significance of health status measures. Mayo Clinic Proceedings. 2002;77:371-383.

 King MT. A point of minimal important difference (MID): a critique of terminology and methods. Expert Reviews in Pharmacoeconomics Outcomes Research, 2011: 11(2), 171-184.

Osoba D, Bezjak A, Brundage M, et al. Analysis and interpretation of health-related quality-of-life data from clinical trials: basic approach of The National Cancer Institute of Canada Clinical Trials Group. European Journal of Cancer. Jan 2005;41(2):280-287.

Schwartz CE, Sprangers MA. Adaptation to Changing Health: Response Shift in Quality-of-Life Research. 1 ed. Washington: American Psychological Association; 2000.

Wyrwich KW, Bullinger M, Aaronson N, et al. Estimating clinically significant differences in quality of life outcomes. Quality of Life Research. Mar 2005;14(2):285-295.

Missing data

Prevention

Bern Young T, De Haes HC, Curran D, Fayers P, Brandberg Y, on behalf of the EORTC Quality of Life Group. Guidelines for assessing quality of life in EORTC clinical trials. Brussels: EORTC;1999.

Fayers PM, Hopwood P, Harvey A, Girling DJ, Machin D, Stephens R. Quality of life assessment in clinical trials--guidelines and a checklist for protocol writers: the U.K. Medical Research Council experience. MRC Cancer Trials Office. European Journal of Cancer. Jan 1997;33(1):20-28.

 Revicki D. Preventing missing data. In: Fayers P, Hays RD, eds. Assessing quality of life in clinical trials. 2nd ed. Oxford: Oxford University Press; 2005:167-178.

Analysis

Bernhard J, Gelber RD, eds. Workshop on missing data in quality of life research in cancer clinical trials: practical and methodological issues. Statistics in Medicine. 1998;17(5-7):511-796. Plus other articles in this special issue.

Fairclough DL. Analysing studies with missing data. In: Fayers P, Hays RD, eds. Assessing quality of life in clinical trials. Oxford: Oxford University Press; 2005:179-194.

Fox-Wasylyshyn SM, Masri MM. Focus on research methods. Handling missing data in self-report measures. Research in Nursing & Health. 2005;28:488-495.

Myers WR. Handling missing data in clinical trials: An overview. Drug Information Journal. 2000;34(2):525-533

Reporting of HRQoL-related findings

 

Calvert M, Blazeby J, Altman DG, Revicki DA, Moher D, Brundage M on behalf of the CONSORT PRO Group. Reporting of Patient Reported Outcomes in Randomised Trials: the CONSORT PRO Extension. JAMA, 2013 Feb 27;309(8):814-22.

Efficace F, Bottomley A, Osoba D, et al. Beyond the development of health-related quality-of-life (HRQoL) measures: a checklist for evaluating HRQoL outcomes in cancer clinical trials--does HRQoL evaluation in prostate cancer research inform clinical decision making? Journal of Clinical Oncology. Sep 15 2003;21(18):3502-3511.

Staquet M, Berzon R, Osoba D, Machin D. Guidelines for reporting results of quality of life assessments in clinical trials. Quality of Life Research. 1996;5(5):496-502.

Assessing the quality of palliative care

Patient reported outcomes in clinical practice

 

Frost MH, Bonomi AE, Cappelleri JC, et al. Applying quality-of-life data formally and systematically into clinical practice. Mayo Clinic Proceedings. Oct 2007;82(10):1214-1228.

Higginson IJ, Carr AJ. Measuring quality of life: Using quality of life measures in the clinical setting. BMJ. May 26 2001;322(7297):1297-1300. 

Instrument reviews

 

Australian Government Department of Health and Ageing. National continence management strategy phase three action plan 2006 to 2010: Continence outcomes measure dissemination project. http://www.bladderbowel.gov.au/ncp/ncms/projects/phase3/evidence/comsds.htm

Barry MJ, Dancey JE. Instruments to measure the specific health impact of surgery, radiation, and chemotherapy on cancer patients. In: Lipscomb J, Gotay CC, Snyder C, eds. Outcomes assessment in cancer: Measures, methods, and applications. Cambridge: Cambridge University Press; 2005:201-215.

Boling W, Fouladi RT, Basen-Engquist K. Health-related quality of life in gynecological oncology: instruments and psychometric properties. International Journal of Gynecological Cancer. Jan-Feb 2003;13(1):5-14.

Cheung YB, Goh C, Thumboo J, Khoo K-S, Wee J. Quality of life scores differed according to mode of administration in a review of three major oncology questionnaires. Journal of Clinical Epidemiology. Feb 2006;59(2):185-191.

Clarke S-A, Eiser C. The measurement of health-related quality of life (QOL) in paediatric clinical trials: a systematic review. Health & Quality of Life Outcomes. 2004;2:66. http://www.hqlo.com/content/2/1/66

Coons SJ, Rao S, Keininger DL, Hays RD. A comparative review of generic quality-of-life instruments. Pharmacoeconomics. Jan 2000;17(1):13-35.

Cremeens J, Eiser C, Blades M. Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health & Quality of Life Outcomes. 2006;4:58. http://www.hqlo.com/content/4/1/58

Edwards B, Ung L. Quality of life instruments for caregivers of patients with cancer: a review of their psychometric properties. Cancer Nursing. Oct 2002;25(5):342-349.

Eiser C, Morse R. A review of measures of quality of life for children with chronic illness. Archives of Disease in Childhood. Mar 2001;84(3):205-211.

Fallowfield LJ, Harper P. Health-related quality of life in patients undergoing drug therapy for advanced non-small-cell lung cancer. Lung Cancer. Jun 2005;48(3):365-377.

Ferrans CE. Differences in what quality-of-life instruments measure. Journal of the National Cancer Institute. 2007; Monographs.(37):22-26. http://jncimonographs.oxfordjournals.org/cgi/reprint/2007/37/22

Grange A, Bekker H, Noyes J, Langley P. Adequacy of health-related quality of life measures in children under 5 years old: systematic review. Journal of Advanced Nursing. 2007;59(3):197-220.

Jensen MP. The validity and reliability of cancer pain measures. Journal of Pain. 2003;4(1):2-21.

Kirkova J, Davis MP, Walsh D, et al. Cancer symptom assessment instruments: a systematic review.[erratum appears in J Clin Oncol. 2006 Jun 20;24(18):2973]. Journal of Clinical Oncology. Mar 20 2006;24(9):1459-1473.

Krahn M, Bremner KE, Tomlinson G, Ritvo P, Irvine J, Naglie G. Responsiveness of disease-specific and generic utility instruments in prostate cancer patients. Quality of Life Research. 2007 Apr;16(3):509-22

Massaro T, McMillan SC. Instruments for assessing quality of life in palliative care settings. International Journal of Palliative Nursing. Oct 2000;6(9):429-433.

Mularski RA, Dy SM, Shugarman LR, et al. A Systematic Review of Measures of End-of-Life Care and Its Outcomes. Health Services Research. 2007;42(5):1848-1870.

National Breast and Ovarian Cancer Centre. The identification of psychological distress in women with breast cancer. http://www.nbocc.org.au/resources/documents/IPD_The_identification_of_psychological_distress_in_women_with_breast_cancer.pdf

Okamoto T, Shimozuma K, Katsumata N, et al. Measuring quality of life in patients with breast cancer: a systematic review of reliable and valid instruments available in Japan. Breast Cancer. 2003;10(3):204-213.

Pallis AG, Mouzas IA. Instruments for quality of life assessment in patients with gastrointestinal cancer. Anticancer Research. May-Jun 2004;24(3b):2117-2121.

Patel KK, Veenstra DL, Patrick DL. A review of selected patient-generated outcome measures and their application in clinical trials. Value in Health. Sep-Oct 2003;6(5):595-603.

Pearce NJM, Sanson-Fisher R, Campbell HS. Measuring quality of life in cancer survivors: a methodological review of existing scales. Psycho-Oncology. 2008;17:629–640.

Pusic A, Liu JC, Chen CM, et al. A systematic review of patient-reported outcome measures in head and neck cancer surgery. Otolaryngology - Head & Neck Surgery. Apr 2007;136(4):525-535.

Ringash J, Bezjak A. A structured review of quality of life instruments for head and neck cancer patients. Head & Neck. Mar 2001;23(3):201-213.

Sonis ST, Elting LS, Keefe D, et al. Perspectives on cancer therapy-induced mucosal injury: pathogenesis, measurement, epidemiology, and consequences for patients. Cancer. May 1 2004;100(9 Suppl):1995-2025.

Stromgren AS, Groenvold M, Pedersen L, Olsen AK, Sjogren P. Symptomatology of cancer patients in palliative care: content validation of self-assessment questionnaires against medical records. European Journal of Cancer. Apr 2002;38(6):788-794.

Wei JT. Contemporary measures for the assessment of health-related quality of life in prostate cancer. Expert Review of Pharmacoeconomics and Outcomes Research. 2001;1(2):205-214.

Wen K-Y, Gustafson DH. Needs assessment for cancer patients and their families. Health & Quality of Life Outcomes. Feb 26 2004;2:11. http://www.hqlo.com/content/2/1/11

 Wiebe S, Guyatt G, Weaver B, Matijevic S, Sidwell C. Comparative responsiveness of generic and specific quality-of-life instruments. Journal of Clinical Epidemiology. Jan 2003;56(1):52-60.

 



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