BMC Cancer | |
Are we missing the Institute of Medicine’s mark? A systematic review of patient-reported outcome measures assessing quality of patient-centred cancer care | |
Flora Tzelepis1  Shiho K Rose1  Robert W Sanson-Fisher1  Tara Clinton-McHarg1  Mariko L Carey1  Christine L Paul1  | |
[1] Health Behaviour Research Group, Priority Research Centre for Health Behaviour, University of Newcastle & Hunter Medical Research Institute, Newcastle, New South Wales, Australia | |
关键词: Systematic review; Validity; Reliability; Cancer; Patient-reported outcome measures; Quality of care; Patient-centred; | |
Others : 859115 DOI : 10.1186/1471-2407-14-41 |
|
received in 2013-08-10, accepted in 2014-01-20, 发布年份 2014 | |
【 摘 要 】
Background
The Institute of Medicine (IOM) has endorsed six dimensions of patient-centredness as crucial to providing quality healthcare. These dimensions outline that care must be: 1) respectful to patients’ values, preferences, and expressed needs; 2) coordinated and integrated; 3) provide information, communication, and education; 4) ensure physical comfort; 5) provide emotional support—relieving fear and anxiety; and 6) involve family and friends. However, whether patient-reported outcome measures (PROMs) comprehensively cover these dimensions remains unexplored. This systematic review examined whether PROMs designed to assess the quality of patient-centred cancer care addressed all six IOM dimensions of patient-centred care and the psychometric properties of these measures.
Methods
Medline, PsycINFO, Current Contents, Embase, CINAHL and Scopus were searched to retrieve published studies describing the development and psychometric properties of PROMs assessing the quality of patient-centred cancer care. Two authors determined if eligible PROMs included the six IOM dimensions of patient-centred care and evaluated the adequacy of psychometric properties based on recommended criteria for internal consistency, test-retest reliability, face/content validity, construct validity and cross-cultural adaptation.
Results
Across all 21 PROMs, the most commonly included IOM dimension of patient-centred care was “information, communication and education” (19 measures). In contrast, only five measures assessed the “involvement of family and friends.” Two measures included one IOM-endorsed patient-centred care dimension, two measures had two dimensions, seven measures had three dimensions, five measures had four dimensions, and four measures had five dimensions. One measure, the Indicators (Non-small Cell Lung Cancer), covered all six IOM dimensions of patient-centred care, but had adequate face/content validity only. Eighteen measures met the recommended adequacy criteria for construct validity, 15 for face/content validity, seven for internal consistency, three for cross-cultural adaptation and no measure for test-retest reliability.
Conclusions
There are no psychometrically rigorous PROMs developed with cancer patients that capture all six IOM dimensions of patient-centred care. Using more than one measure or expanding existing measures to cover all six patient-centred care dimensions could improve assessment and delivery of patient-centred care. Construction of new comprehensive measures with acceptable psychometric properties that can be used with the general cancer population may also be warranted.
【 授权许可】
2014 Tzelepis et al.; licensee BioMed Central Ltd.
【 预 览 】
Files | Size | Format | View |
---|---|---|---|
20140724075132522.pdf | 504KB | download | |
43KB | Image | download | |
88KB | Image | download |
【 图 表 】
【 参考文献 】
- [1]Institute of Medicine: Crossing The Quality Chasm: A New Health System for the 21st Century. Washington DC: National Academy Press; 2001.
- [2]Gerteis M, Edgman-Levitan S, Daley J: Through the Patient’s Eyes. Understanding and Promoting Patient-centered Care. San Francisco, CA: Jossey-Bass; 1993.
- [3]Hayman JA: Measuring the quality of care in radiation oncology. Semin Radiat Oncol 2008, 18:201-206.
- [4]Fink R: Pain assessment: the cornerstone to optimal pain management. BUMC Proceedings 2000, 13:236-239.
- [5]Wong WS, Fielding R: The association between patient satisfaction and quality of life in Chinese lung and liver cancer patients. Med Care 2008, 46:293-302.
- [6]Von Essen L, Larsson G, Oberg K, Sjoden PO: ‘Satisfaction with care’: associations with health-related quality of life and psychosocial function among Swedish patients with endocrine gastrointestinal tumours. Eur J Cancer Care 2002, 11:91-99.
- [7]Kim S, Bae J-M, Kim Y-W, Ryu KW, Lee JH, Noh J-H, Sohn T-S, Homg S-K, Lee MK, Park SM, Yun YH: Self-reported experience and outcomes of care among stomach cancer patients at a median follow-up time of 27 months from diagnosis. Support Care Cancer 2008, 16:831-839.
- [8]Frojd C, Lampic C, Larsson G, von Essen L: Is satisfaction with doctors’ care related to health-related quality of life, anxiety and depression among patients with carcinoid tumours? A longitudinal report. Scand J Caring Sci 2009, 23:107-116.
- [9]Mager WM, Andrykowski MA: Communication in the cancer ‘bad news’ consultation: patient perceptions and psychological adjustment. Psychooncology 2002, 11:35-46.
- [10]Bickell NA, Weidmann J, Fei K, Lin JJ, Leventhal H: Underuse of breast cancer adjuvant treatment: patient knowledge, beliefs, and medical mistrust. J Clin Oncol 2009, 27:5160-5167.
- [11]Kahn KL, Schneider EC, Malin JL, Adams JL, Epstein AM: Patient centered experiences in breast cancer: predicting long-term adherence to tamoxifen use. Med Care 2007, 45:431-439.
- [12]Mandelblatt JS, Sheppard VB, Hurria A, Kimmick G, Isaacs C, Taylor KL, et al.: Breast cancer adjuvant chemotherapy decisions in older women: the role of patient preference and interactions with physicians. J Clin Oncol 2010, 28:3146-3153.
- [13]Shin DW, Park JH, Shim EJ, Hahm MI, Park EC: Predictors and outcomes of feeling of insufficient consultation time in cancer care in Korea: results of a nationwide multicenter survey. Support Care Cancer 2012, 20:1965-1973.
- [14]Kowalski C, Nitzsche A, Scheibler F, Steffen P, Albert U-S, Pfaff H: Breast cancer patients’ trust in physicians: the impact of patients’ perception of physicians’ communication behaviors and hospital organizational climate. Patient Educ Couns 2009, 77:344-348.
- [15]Crow R, Gage H, Hampson S, Hart J, Kimber A, Storey L, Thomas H: The measurement of satisfaction with healthcare: implications for practice from a systematic review of the literature. Health Technol Assess 2002, 6:1-244.
- [16]Cleary PD, Edgman-Levitan S: Health care quality. Incorporating consumer perspectives. JAMA 1997, 278:1608-1612.
- [17]Mitchell PH, Heinrich J, Moritz P, Hinshaw AS: Measurement into practice. Summary and recommendations. Med Care 1997, 35(Suppl 11):NS124-127.
- [18]Lohr KN, Aaronson NK, Alonso J, Burnam MA, Patrick DL, Perrin EB, Roberts JS: Evaluating quality-of-life and health status instruments: development of scientific review criteria. Clin Ther 1996, 18:979-992.
- [19]McDowell I: Measuring Health: A Guide to Rating Scales and Questionnaires. New York: Oxford University Press; 2006.
- [20]Marx RG, Menezes A, Horovitz L, Jones EC, Warren RF: A comparison of two time intervals for test-retest reliability of health status instruments. J Clin Epidemiol 2003, 56:730-735.
- [21]Viswanathan M: Measurement Error and Research Design. CA: Sage Publications; 2005.
- [22]Anastasi A, Urbina S: Psychological Testing. Prentice Hall: Upper Saddle River, NJ; 1997.
- [23]Cohen J: Statistical Power Analysis for the Behavioural Sciences. Hillsdale, NJ: Erlbaum; 1988.
- [24]Kaiser HF: The application of electronic computers to factor analysis. Educ Psychol Meas 1960, 20:141-151.
- [25]Castle NG, Brown J, Hepner KA, Hays RD: Review of the literature on survey instruments used to collect data on hospital patients’ perceptions of care. Health Serv Res 2005, 40:1996-2017.
- [26]Rubin HR: Patient evaluations of hospital care. A review of the literature. Med Care 1990, 28(Suppl 9):S3-9.
- [27]Bredart A, Sultan S, Regnault A: Patient satisfaction instruments for cancer clinical research or practice. Expert Rev 2010, 10:129-141.
- [28]Hudon C, Fortin M, Haggerty JL, Lambert M, Poitras ME: Measuring patients’ perceptions of patient-centered care: a systematic review of tools for family medicine. Ann Fam Med 2011, 9:155-164.
- [29]Hearn J, Higginson IJ: Outcome measures in palliative care for advanced cancer patients: a review. J Public Health Med 1997, 19:193-199.
- [30]Clinton-McHarg T, Carey M, Sanson-Fisher R, Shakeshaft A, Rainbird K: Measuring the psychosocial health of adolescent and young adult (AYA) cancer survivors: a critical review. Health Qual Life Outcomes 2010, 8:25. BioMed Central Full Text
- [31]Poinsot R, Altmeyer A, Conroy T, Savignoni A, Asselain B, Léonard I, Marx E, Cosquer M, Sévellec M, Gledhill J: Multisite validation study of questionnaire assessing out-patient satisfaction with care questionnaire in ambulatory chemotherapy or radiotherapy treatment. Bull Cancer 2006, 93:315-327.
- [32]Arora NK, Reeve BB, Hays RD, Clauser SB, Oakley-Girvan I: Assessment of quality of cancer-related follow-up care from the cancer survivor’s perspective. J Clin Oncol 2011, 29:1280-1289.
- [33]Young JM, Walsh J, Butow PN, Solomon MJ, Shaw J: Measuring cancer care coordination: development and validation of a questionnaire for patients. BMC Cancer 2011, 11:298. BioMed Central Full Text
- [34]Fitch F, McAndrew A: A performance measurement tool for cancer patient information and satisfaction. J Cancer Educ 2011, 26:612-618.
- [35]Trask P, Tellefsen C, Epspindle D, Getter C, Hsu M: Psychometric validation of the Cancer Therapy Satisfaction Questionnaire. Value Health 2008, 11:669-679.
- [36]Abetz L, Coombs JH, Keininger DL, Earle CC, Wade C, Bury-Maynard D, Copley-Merriman K, Hsu M-A: Development of the cancer therapy satisfaction questionnaire: item generation and content validity testing. Value Health 2005, 8(Suppl 1):S41-53.
- [37]Damman OC, Hendriks M, Sixma HJ: Towards more patient centred healthcare: a new Consumer Quality Index instrument to assess patients’ experiences with breast care. Eur J Cancer 2009, 45:1569-1577.
- [38]Bredart A, Bottomley A, Blazeby JM, Conroy T, Coens C, D'Haese S, et al.: An international prospective study of the EORTC cancer in-patient satisfaction with care measure (EORTC IN-PATSAT32). Eur J Cancer 2005, 41:2120-2131.
- [39]Ouwens MM, Marres HA, Hermens RR, Hulscher MM, van den Hoogen FJ, Grol RP, Wollersheim HC: Quality of integrated care for patients with head and neck cancer: development and measurement of clinical indicators. Head Neck 2007, 29:378-386.
- [40]Ouwens M, Hermens R, Hulscher M, Vonk-Okhuijsen S, Tjan-Heijnen V, Termeer R, Marres H, Wollersheim H, Grol R: Development of indicators for patient-centred cancer care. Support Care Cancer 2010, 18:121-130.
- [41]Harley C, Adams J, Booth L, Selby P, Brown J, Velikova G: Patient experiences of continuity of cancer care: development of a new Medical Care Questionnaire (MCQ) for oncology outpatients. Value Health 2009, 12:1180-1186.
- [42]Smith MY, Winkel G, Egert J, Diaz-Wionczek M, DuHamel KN: Patient-physician communication in the context of persistent pain: validation of a Modified Version of the Patients’ Perceived Involvement in Care Scale. J Pain Symptom Manage 2006, 32:71-81.
- [43]Radwin L, Alster K, Rubin KM: Development and testing of the Oncology Patients’ Perceptions of the Quality of Nursing Care Scale. Oncol Nurs Forum 2003, 30:283-290.
- [44]Beck SL, Towsley GL, Pett MA, Berry PH, Smith EL, Brant JM, Guo J-W: Initial psychometric properties of the Pain Care Quality Survey (PainCQ). J Pain 2010, 11:1311-1319.
- [45]Beck SL, Towsley GL, Berry PH, Brant JM, Smith EM: Measuring the quality of care related to pain management: a multiple-method approach to instrument development. Nurs Res 2010, 59:85-92.
- [46]Kleeberg UR, Tews JT, Ruprecht T, Hoing M, Kuhlmann A, Runge C: Patient satisfaction and quality of life in cancer outpatients: results of the PASQOC study. Support Care Cancer 2005, 13:303-10.
- [47]Jean-Pierre P, Fiscella K, Freund KM, Clark J, Darnell J, Holden A, Post D, Patierno SR, Winters PC, Patient Navigation Research Program Group: Structural and reliability analysis of a patient satisfaction with cancer-related care measure: a multisite patient navigation research program study. Cancer 2011, 117:854-861.
- [48]Takayama T, Yamazaki Y, Katsumata N: Relationship between outpatients‘ perceptions of physicians’ communication styles and patients’ anxiety levels in a Japanese oncology setting. Soc Sci Med 2001, 53:1335-1350.
- [49]Tarrant C, Baker R, Colman AM, Sinfield P, Agarwal S, Mellon JK, Steward W, Kockelbergh R: The prostate care questionnaire for patients (PCQ-P): reliability, validity and acceptability. BMC Health Serv Res 2009, 9:199. BioMed Central Full Text
- [50]de Kok M, Sixma HJM, van der Weijden T, Kessels AGH, Dirksen CD, Spijkers KFJ, et al.: A patient-centred instrument for assessment of quality of breast cancer care: results of a pilot questionnaire. Qual Saf Health Care 2010, 19:e40.
- [51]de Kok M, Scholte RW, Sixma HJ, van der Weijden T, Spijkers KF, van de Velde CJ, Roukema JA, ven der Ent FW, Bell AV, von Meyenfeldt MF: The patient’s perspective of the quality of breast cancer care. The development of an instrument to measure quality of care through focus groups and concept mapping with breast cancer patients. Eur J Cancer 2007, 43:1257-1264.
- [52]van Weert JCM, Jansen J, de Bruijn GJ, Noordman J, van Dulmen S, Bensing JM: QUOTEchemo: a patient-centred instrument to measure quality of communication preceding chemotherapy treatment through the patient’s eyes. Eur J Cancer 2009, 45:2967-2976.
- [53]Defossez G, Mathoulin-Pelissier S, Ingrand I, Gasquet I, Sifer-Riviere L, Ingrand P, Salamon R, Migeot V, the REPERES research network: Satisfaction with care among patients with non-metastatic breast cancer: development and first steps of validation of the REPERES-60 questionnaire. BMC Cancer 2007, 7:129. BioMed Central Full Text
- [54]Llewellyn C, Horne R, McGurk M, Weinman J: Development and preliminary validation of a new measure to assess satisfaction with information among head and neck cancer patients: the Satisfaction with Cancer Information Profile (SCIP). Head Neck 2005, 28:540-548.
- [55]Bredart A, Morvan E, Savignoni A, Giraud P, Respiratory Gated Radiotherapy Study Group S-R: Patient’s perception of care quality during radiotherapy sessions using respiratory gating techniques: validation of a specific questionnaire. Cancer Invest 2011, 29:145-152.
- [56]Jayasekara H, Rajapaksa L, Bredart A: Psychometric evaluation of the European Organization for Research and Treatment of Cancer in-patient satisfaction with care questionnaire (‘Sinhala’ version) for use in a South-Asian setting. Int J Qual Health Care 2008, 20:221-226.
- [57]Jacobsen R, Samsanaviciene J, Liuabarskiene Z, Sciupokas A: Barriers to pain management among Lithuanian cancer patients. Pain Pract 2010, 10:145-157.
- [58]Can G, Akin S, Aydiner A, Ozdilli K, Durna Z: Evaluation of the effect of care given by nursing students on oncology patients’ satisfaction. Eur J Oncol Nurs 2008, 12:387-392.
- [59]Streiner D, Norman G: Health Measurement Scales: A Practical Guide to their Development and Use. New York: Oxford University Press, Fourth; 2008.
- [60]Terwee CB, Bot SD, de Boer MR, van der Windt DA, Knol DL, Dekker J, Bouter LM, de Vet HC: Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol 2007, 60:34-42.
- [61]Sanson-Fisher R, Carey M, Mackenzie L, Hill D, Campbell S, Turner D: Reducing inequities in cancer care: the role of cancer registries. Cancer 2009, 115:3597-3605.
- [62]Lawler S, Spathonis K, Masters J, Adams J, Eakin E: Follow-up care after breast cancer treatment: experiences and perceptions of service provision and provider interactions in rural Australian women. Support Care Cancer 2011, 19:1975-1982.
- [63]The Prostate Care Questionnaire for Patients (PCQ-P). http://winden.co.uk/Surveys/Prostate%20Disease/Appendix%2023%20Patient%20v5.1%2008-02-08%2020-02-08.pdf webcite. Accessed 16 November 2012. September 2007
- [64]Bredart A, Mignot V, Rousseau A, Dolbeault S, Beauloye N, Adam V, Elie C, Leonard I, Asselain B, Conroy T: Validation of the EORTC QLQ-SAT32 cancer inpatient satisfaction questionnaire by self- versus interview-assessment comparison. Patient Educ Couns 2004, 54:207-212.
- [65]Bredart A, Razavi D, Delvaux N, Goodman V, Farvacques C, Van Heer C: A comprehensive assessment of satisfaction with care for cancer patients. Support Care Cancer 1998, 6:518-523.