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Erschienen in: Journal of Cancer Survivorship 4/2017

03.04.2017 | Review

Cancer survivorship monitoring systems for the collection of patient-reported outcomes: a systematic narrative review of international approaches

verfasst von: N Corsini, J Fish, I Ramsey, G Sharplin, I Flight, R Damarell, B Wiggins, C Wilson, D Roder, M Eckert

Erschienen in: Journal of Cancer Survivorship | Ausgabe 4/2017

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Abstract

Purpose

This systematic narrative review describes and compares the development and operational approaches of monitoring systems without a clinical care component that collect patient-reported outcome (PRO) data from cancer survivors.

Methods

Searches were conducted using Medline, PubMed, PsycINFO, the Cochrane Library, CINAHL, Scopus, Joanna Briggs Institute EBP Database and Google Scholar (Advanced). Sources of grey literature and websites of relevant organisations were also searched for relevant published and unpublished material. Articles were included if they described the development (including piloting) of monitoring systems with ongoing recruitment that collect PRO at more than one time point, from 6 months post-diagnosis onward.

Results

The initial searches returned 7290 unique citations. After screening titles and abstracts, 39 full-text articles were retrieved for more detailed examination. Eleven articles were included in the review, representing seven international monitoring systems. Systems varied in their scope, implementation process, governance and administration, recruitment and data collection, consent rates, PRO collection, use of PRO and translation strategies.

Conclusions

The most suitable approach for setting-up and implementing a monitoring system for ongoing surveillance will differ depending on the unique requirements, aims and level of resourcing available within a particular context. Better specification and consideration of how PRO data will be used, for what purpose, and by whom, is required to inform effective translational strategies to improve outcomes for cancer survivors.

Implications for Cancer Survivors

The findings from this review may inform the future development of survivorship monitoring systems in varied environments, which in turn may improve practices that lead to better outcomes for survivors.
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Literatur
1.
Zurück zum Zitat American Cancer Society. Global Cancer Facts and Figures: 3rd Edn. Atlanta: American Cancer Society 2015. American Cancer Society. Global Cancer Facts and Figures: 3rd Edn. Atlanta: American Cancer Society 2015.
2.
Zurück zum Zitat Torre LA, Siegel RL, Ward EM, Jemal A. Global cancer incidence and mortality rates and trends—an update. Cancer Epidemiol Biomark Prev. 2016;25(1):16–27.CrossRef Torre LA, Siegel RL, Ward EM, Jemal A. Global cancer incidence and mortality rates and trends—an update. Cancer Epidemiol Biomark Prev. 2016;25(1):16–27.CrossRef
3.
Zurück zum Zitat Ferlay J, Soerjomataram I, Dikshit R, Eser C, Mathers C, Rebelo M, et al. Cancer incidence and mortality worldwide: sources, methods and major patterns in GLOBOCAN 2012. Int J Cancer. 2014; doi:10.1002/ijc.29210.PubMed Ferlay J, Soerjomataram I, Dikshit R, Eser C, Mathers C, Rebelo M, et al. Cancer incidence and mortality worldwide: sources, methods and major patterns in GLOBOCAN 2012. Int J Cancer. 2014; doi:10.​1002/​ijc.​29210.PubMed
4.
Zurück zum Zitat Aziz NM, Rowland JH. Trends and advances in cancer survivorship research: challenge and opportunity. Semin Radiat Oncol. 2003;13(3):248–66.CrossRefPubMed Aziz NM, Rowland JH. Trends and advances in cancer survivorship research: challenge and opportunity. Semin Radiat Oncol. 2003;13(3):248–66.CrossRefPubMed
5.
Zurück zum Zitat Grunfeld E, Earle CC, Stovall E. A framework for cancer survivorship research and translation to policy. Cancer Epidemiol Biomark Prev. 2011;20(10):2099–104.CrossRef Grunfeld E, Earle CC, Stovall E. A framework for cancer survivorship research and translation to policy. Cancer Epidemiol Biomark Prev. 2011;20(10):2099–104.CrossRef
6.
Zurück zum Zitat de Moor JS, Mariotto AB, Parry C, Alfano CM, Padgett L, Kent EE, et al. Cancer survivors in the United States: prevalence across the survivorship trajectory and implications for care. Cancer Epidemiol Biomark Prev. 2013;22(4):561–70.CrossRef de Moor JS, Mariotto AB, Parry C, Alfano CM, Padgett L, Kent EE, et al. Cancer survivors in the United States: prevalence across the survivorship trajectory and implications for care. Cancer Epidemiol Biomark Prev. 2013;22(4):561–70.CrossRef
7.
Zurück zum Zitat Aziz NM. Cancer survivorship research: challenge and opportunity. J Nutr. 2002;132(11 Suppl):3494S–503S.PubMed Aziz NM. Cancer survivorship research: challenge and opportunity. J Nutr. 2002;132(11 Suppl):3494S–503S.PubMed
8.
Zurück zum Zitat Food US, Administration D. Guidance for industry patient-reported outcome measures: use in medical product development to support labeling claims. Fed Regist. 2009;74(35):65132–3. Food US, Administration D. Guidance for industry patient-reported outcome measures: use in medical product development to support labeling claims. Fed Regist. 2009;74(35):65132–3.
10.
Zurück zum Zitat Glaser AW, Fraser LK, Corner J, Feltbower R, Morris EJ, Hartwell G, et al. Patient-reported outcomes of cancer survivors in England 1–5 years after diagnosis: a cross-sectional survey. BMJ Open. 2013;3(4):e002317.CrossRefPubMedPubMedCentral Glaser AW, Fraser LK, Corner J, Feltbower R, Morris EJ, Hartwell G, et al. Patient-reported outcomes of cancer survivors in England 1–5 years after diagnosis: a cross-sectional survey. BMJ Open. 2013;3(4):e002317.CrossRefPubMedPubMedCentral
11.
Zurück zum Zitat Jensen RE, Snyder CF, Abernethy AP, Basch E, Potosky A, Roberts AC, et al. Review of electronic patient-reported outcome systems used in cancer clinical care. Proc Am Soc Clin Oncol. 2013;10(4):e215–22. Jensen RE, Snyder CF, Abernethy AP, Basch E, Potosky A, Roberts AC, et al. Review of electronic patient-reported outcome systems used in cancer clinical care. Proc Am Soc Clin Oncol. 2013;10(4):e215–22.
12.
Zurück zum Zitat Thong MS, Mols F, Stein KD, Smith T, Coebergh JW, van de Poll-Franse LV. Population-based cancer registries for quality-of-life research: a work-in-progress resource for survivorship studies? Cancer. 2013;119(Suppl 11):2109–23. doi:10.1002/cncr.28056.CrossRefPubMed Thong MS, Mols F, Stein KD, Smith T, Coebergh JW, van de Poll-Franse LV. Population-based cancer registries for quality-of-life research: a work-in-progress resource for survivorship studies? Cancer. 2013;119(Suppl 11):2109–23. doi:10.​1002/​cncr.​28056.CrossRefPubMed
13.
Zurück zum Zitat Arora NK, Hamilton AS, Potosky AL, Rowland JH, Aziz NM, Bellizzi KM, et al. Population-based survivorship research using cancer registries: a study of non-Hodgkin’s lymphoma survivors. J Cancer Surviv. 2007;1(1):49–63. doi:10.1007/s11764-007-0004-3.CrossRefPubMed Arora NK, Hamilton AS, Potosky AL, Rowland JH, Aziz NM, Bellizzi KM, et al. Population-based survivorship research using cancer registries: a study of non-Hodgkin’s lymphoma survivors. J Cancer Surviv. 2007;1(1):49–63. doi:10.​1007/​s11764-007-0004-3.CrossRefPubMed
14.
Zurück zum Zitat Ganz PA, Earle CC, Goodwin PJ. Journal of clinical oncology update on progress in cancer survivorship care and research. J Clin Oncol. 2012;30(30):3655–6.CrossRefPubMed Ganz PA, Earle CC, Goodwin PJ. Journal of clinical oncology update on progress in cancer survivorship care and research. J Clin Oncol. 2012;30(30):3655–6.CrossRefPubMed
15.
Zurück zum Zitat van de Poll-Franse LV, Horevoorts N, Eenbergen Mv, Denollet J, Roukema JA, Aaronson NK et al. Eenbergen Mv, Denollet J, Roukema JA, Aaronson NK et al. The patient reported outcomes following initial treatment and long term evaluation of survivorship registry: scope, rationale and design of an infrastructure for the study of physical and psychosocial outcomes in cancer survivorship cohorts. Eur J Cancer 2011;47(14):2188–2194. doi:10.1016/j.ejca.2011.04.034. van de Poll-Franse LV, Horevoorts N, Eenbergen Mv, Denollet J, Roukema JA, Aaronson NK et al. Eenbergen Mv, Denollet J, Roukema JA, Aaronson NK et al. The patient reported outcomes following initial treatment and long term evaluation of survivorship registry: scope, rationale and design of an infrastructure for the study of physical and psychosocial outcomes in cancer survivorship cohorts. Eur J Cancer 2011;47(14):2188–2194. doi:10.​1016/​j.​ejca.​2011.​04.​034.
16.
Zurück zum Zitat Lubeck DP, Litwin MS, Henning JM, Carroll PR. Measurement of health-related quality of life in men with prostate cancer: the CaPSURE database. Qual Life Res. 1997;6(5):385–92.CrossRefPubMed Lubeck DP, Litwin MS, Henning JM, Carroll PR. Measurement of health-related quality of life in men with prostate cancer: the CaPSURE database. Qual Life Res. 1997;6(5):385–92.CrossRefPubMed
19.
Zurück zum Zitat Daly BJ, Douglas SL, Foley H, Lipson A, Liou CF, Bowman K, et al. Psychosocial registry for persons with cancer: a method of facilitating quality of life and symptom research. Psychooncology. 2007;16(4):358–64.CrossRefPubMed Daly BJ, Douglas SL, Foley H, Lipson A, Liou CF, Bowman K, et al. Psychosocial registry for persons with cancer: a method of facilitating quality of life and symptom research. Psychooncology. 2007;16(4):358–64.CrossRefPubMed
20.
Zurück zum Zitat Freeman D, Dickerson G, Perman M. Multi-institutional registry for prostate cancer radiosurgery: a prospective observational clinical trial. Front. 2014;4:369. doi:10.3389/fonc.2014.00369. Freeman D, Dickerson G, Perman M. Multi-institutional registry for prostate cancer radiosurgery: a prospective observational clinical trial. Front. 2014;4:369. doi:10.​3389/​fonc.​2014.​00369.
21.
Zurück zum Zitat Ashley L, Jones H, Forman D, Newsham A, Brown J, Downing A, et al. Feasibility test of a UK-scalable electronic system for regular collection of patient-reported outcome measures and linkage with clinical cancer registry data: the electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system. BMC Med Inf Decis Mak. 2011;11:66. doi:10.1186/1472-6947-11-66.CrossRef Ashley L, Jones H, Forman D, Newsham A, Brown J, Downing A, et al. Feasibility test of a UK-scalable electronic system for regular collection of patient-reported outcome measures and linkage with clinical cancer registry data: the electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system. BMC Med Inf Decis Mak. 2011;11:66. doi:10.​1186/​1472-6947-11-66.CrossRef
22.
Zurück zum Zitat Ashley L, Jones H, Thomas J, Forman D, Newsham A, Morris E, et al. Integrating cancer survivors' experiences into UK cancer registries: design and development of the ePOCS system (electronic Patient-reported Outcomes from Cancer Survivors). Br J Cancer. 2011;105(Suppl 1):S74–81. doi:10.1038/bjc.2011.424.CrossRefPubMedPubMedCentral Ashley L, Jones H, Thomas J, Forman D, Newsham A, Morris E, et al. Integrating cancer survivors' experiences into UK cancer registries: design and development of the ePOCS system (electronic Patient-reported Outcomes from Cancer Survivors). Br J Cancer. 2011;105(Suppl 1):S74–81. doi:10.​1038/​bjc.​2011.​424.CrossRefPubMedPubMedCentral
23.
Zurück zum Zitat Ashley L, Jones H, Thomas J, Newsham A, Downing A, Morris E, et al. Integrating patient reported outcomes with clinical cancer registry data: a feasibility study of the electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) system. J Med Internet Res. 2013;15(10):e230. doi:10.2196/jmir.2764.CrossRefPubMedPubMedCentral Ashley L, Jones H, Thomas J, Newsham A, Downing A, Morris E, et al. Integrating patient reported outcomes with clinical cancer registry data: a feasibility study of the electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) system. J Med Internet Res. 2013;15(10):e230. doi:10.​2196/​jmir.​2764.CrossRefPubMedPubMedCentral
25.
Zurück zum Zitat Stirling RG, Evans S, McLaughlin P, Senthuren M, Millar J, Gooi J, et al. The Victorian Lung Cancer Registry pilot: improving the quality of lung cancer care through the use of a disease quality registry. Lung. 2014;192(5):749–58.CrossRefPubMed Stirling RG, Evans S, McLaughlin P, Senthuren M, Millar J, Gooi J, et al. The Victorian Lung Cancer Registry pilot: improving the quality of lung cancer care through the use of a disease quality registry. Lung. 2014;192(5):749–58.CrossRefPubMed
26.
Zurück zum Zitat Howell D, Fitch M, Bakker D, Green E, Sussman J, Mayo S, et al. Core domains for a person-focused outcome measurement system in cancer (PROMS-Cancer Core) for routine care: a scoping review and Canadian Delphi Consensus. Value Health. 2013;16(1):76–87.CrossRefPubMed Howell D, Fitch M, Bakker D, Green E, Sussman J, Mayo S, et al. Core domains for a person-focused outcome measurement system in cancer (PROMS-Cancer Core) for routine care: a scoping review and Canadian Delphi Consensus. Value Health. 2013;16(1):76–87.CrossRefPubMed
27.
Zurück zum Zitat Chaudhry S, Jin L, Meltzer D. Use of a self-report-generated Charlson Comorbidity Index for predicting mortality. Med Care. 2005;43(6):607–15.CrossRefPubMed Chaudhry S, Jin L, Meltzer D. Use of a self-report-generated Charlson Comorbidity Index for predicting mortality. Med Care. 2005;43(6):607–15.CrossRefPubMed
28.
Zurück zum Zitat Litwin MS, Greenfield S, Elkin EP, Lubeck DP, Broering JM, Kaplan SH. Assessment of prognosis with the total illness burden index for prostate cancer: aiding clinicians in treatment choice. Cancer. 2007;109(9):1777–83.CrossRefPubMed Litwin MS, Greenfield S, Elkin EP, Lubeck DP, Broering JM, Kaplan SH. Assessment of prognosis with the total illness burden index for prostate cancer: aiding clinicians in treatment choice. Cancer. 2007;109(9):1777–83.CrossRefPubMed
29.
Zurück zum Zitat Sangha O, Stucki G, Liang MH, Fossel AH, Katz JN. The self-administered comorbidity questionnaire: a new method to assess comorbidity for clinical and health services research. Arthritis Care Res (Hoboken). 2003;49(2):156–63.CrossRef Sangha O, Stucki G, Liang MH, Fossel AH, Katz JN. The self-administered comorbidity questionnaire: a new method to assess comorbidity for clinical and health services research. Arthritis Care Res (Hoboken). 2003;49(2):156–63.CrossRef
30.
Zurück zum Zitat Mor V, Laliberte L, Morris JN, Wiemann M. The Karnofsky performance status scale: an examination of its reliability and validity in a research setting. Cancer. 1984;53(9):2002–7.CrossRefPubMed Mor V, Laliberte L, Morris JN, Wiemann M. The Karnofsky performance status scale: an examination of its reliability and validity in a research setting. Cancer. 1984;53(9):2002–7.CrossRefPubMed
31.
Zurück zum Zitat Karnofsky DA, Abelmann WH, Craver LF, Burchenal JH. The use of the nitrogen mustards in the palliative treatment of carcinoma. With particular reference to bronchogenic carcinoma. Cancer. 1948;1(4):634–56.CrossRef Karnofsky DA, Abelmann WH, Craver LF, Burchenal JH. The use of the nitrogen mustards in the palliative treatment of carcinoma. With particular reference to bronchogenic carcinoma. Cancer. 1948;1(4):634–56.CrossRef
32.
Zurück zum Zitat Buccheri G, Ferrigno D, Tamburini M. Karnofsky and ECOG performance status scoring in lung cancer: a prospective, longitudinal study of 536 patients from a single institution. Eur J Cancer. 1996;32(7):1135–41.CrossRef Buccheri G, Ferrigno D, Tamburini M. Karnofsky and ECOG performance status scoring in lung cancer: a prospective, longitudinal study of 536 patients from a single institution. Eur J Cancer. 1996;32(7):1135–41.CrossRef
33.
Zurück zum Zitat Oken MM, Creech RH, Tormey DC, Horton J, Davis TE, McFadden ET, et al. Toxicity and response criteria of the Eastern Cooperative Oncology Group. Am J Clin Oncol. 1982;5(6):649–56.CrossRefPubMed Oken MM, Creech RH, Tormey DC, Horton J, Davis TE, McFadden ET, et al. Toxicity and response criteria of the Eastern Cooperative Oncology Group. Am J Clin Oncol. 1982;5(6):649–56.CrossRefPubMed
34.
Zurück zum Zitat Michielsen HJ, De Vries J, Van Heck GL, Van de Vijver FJ, Sijtsma K. Examination of the dimensionality of fatigue: the construction of the fatigue assessment scale (FAS). Eur J Psychol Assess. 2004;20(1):39.CrossRef Michielsen HJ, De Vries J, Van Heck GL, Van de Vijver FJ, Sijtsma K. Examination of the dimensionality of fatigue: the construction of the fatigue assessment scale (FAS). Eur J Psychol Assess. 2004;20(1):39.CrossRef
35.
Zurück zum Zitat Szymanski KM, Wei JT, Dunn RL, Sanda MG. Development and validation of an abbreviated version of the expanded prostate cancer index composite instrument for measuring health-related quality of life among prostate cancer survivors. Urology. 2010;76(5):1245–50.CrossRefPubMedPubMedCentral Szymanski KM, Wei JT, Dunn RL, Sanda MG. Development and validation of an abbreviated version of the expanded prostate cancer index composite instrument for measuring health-related quality of life among prostate cancer survivors. Urology. 2010;76(5):1245–50.CrossRefPubMedPubMedCentral
36.
Zurück zum Zitat Barry MJ, Fowler Jr FJ, O'Leary MP, Bruskewitz R, Holtgrewe H, Mebust W, et al. The American Urological Association symptom index for benign prostatic hyperplasia. The Measurement Committee of the American Urological Association. J Urol. 1992;148(5):1549–57. discussion 64CrossRefPubMed Barry MJ, Fowler Jr FJ, O'Leary MP, Bruskewitz R, Holtgrewe H, Mebust W, et al. The American Urological Association symptom index for benign prostatic hyperplasia. The Measurement Committee of the American Urological Association. J Urol. 1992;148(5):1549–57. discussion 64CrossRefPubMed
37.
Zurück zum Zitat Rosen R, Cappelleri J, Smith M, Lipsky J, Pena B. Development and evaluation of an abridged, 5-item version of the International Index Of Erectile Function (IIEF-5) as a diagnostic tool for erectile dysfunction. Int J Impot Res. 1999;11(6):319–26.CrossRefPubMed Rosen R, Cappelleri J, Smith M, Lipsky J, Pena B. Development and evaluation of an abridged, 5-item version of the International Index Of Erectile Function (IIEF-5) as a diagnostic tool for erectile dysfunction. Int J Impot Res. 1999;11(6):319–26.CrossRefPubMed
38.
Zurück zum Zitat Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993;85(5):365–76.CrossRefPubMed Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993;85(5):365–76.CrossRefPubMed
39.
Zurück zum Zitat van Andel G, Bottomley A, Fosså SD, Efficace F, Coens C, Guerif S, et al. An international field study of the EORTC QLQ-PR25: a questionnaire for assessing the health-related quality of life of patients with prostate cancer. Eur J Cancer. 2008;44(16):2418–24.CrossRefPubMed van Andel G, Bottomley A, Fosså SD, Efficace F, Coens C, Guerif S, et al. An international field study of the EORTC QLQ-PR25: a questionnaire for assessing the health-related quality of life of patients with prostate cancer. Eur J Cancer. 2008;44(16):2418–24.CrossRefPubMed
40.
Zurück zum Zitat Gujral S, Conroy T, Fleissner C, Sezer O, King P, Avery K, et al. Assessing quality of life in patients with colorectal cancer: an update of the EORTC quality of life questionnaire. Eur J Cancer. 2007;43(10):1564–73.CrossRefPubMed Gujral S, Conroy T, Fleissner C, Sezer O, King P, Avery K, et al. Assessing quality of life in patients with colorectal cancer: an update of the EORTC quality of life questionnaire. Eur J Cancer. 2007;43(10):1564–73.CrossRefPubMed
41.
Zurück zum Zitat Sprangers M, Groenvold M, Arraras JI, Franklin J, te Velde A, Muller M, et al. The European Organization for Research and Treatment of Cancer breast cancer-specific quality-of-life questionnaire module: first results from a three-country field study. J Clin Oncol. 1996;14(10):2756–68.CrossRefPubMed Sprangers M, Groenvold M, Arraras JI, Franklin J, te Velde A, Muller M, et al. The European Organization for Research and Treatment of Cancer breast cancer-specific quality-of-life questionnaire module: first results from a three-country field study. J Clin Oncol. 1996;14(10):2756–68.CrossRefPubMed
42.
Zurück zum Zitat Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67(6):361–70.CrossRefPubMed Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67(6):361–70.CrossRefPubMed
43.
Zurück zum Zitat Andresen EM, Malmgren JA, Carter WB, Patrick DL. Screening for depression in well older adults: evaluation of a short form of the CES-D. Am J Prev Med. 1994. Andresen EM, Malmgren JA, Carter WB, Patrick DL. Screening for depression in well older adults: evaluation of a short form of the CES-D. Am J Prev Med. 1994.
44.
Zurück zum Zitat Cella DF, Jacobsen PB, Orav EJ, Holland JC, Silberfarb PM, Rafla S. A brief POMS measure of distress for cancer patients. J Chronic Dis. 1987;40(10):939–42.CrossRefPubMed Cella DF, Jacobsen PB, Orav EJ, Holland JC, Silberfarb PM, Rafla S. A brief POMS measure of distress for cancer patients. J Chronic Dis. 1987;40(10):939–42.CrossRefPubMed
45.
Zurück zum Zitat Moss-Morris R, Weinman J, Petrie K, Horne R, Cameron L, Buick D. The revised illness perception questionnaire (IPQ-R). Psychol Health. 2002;17(1):1–16.CrossRef Moss-Morris R, Weinman J, Petrie K, Horne R, Cameron L, Buick D. The revised illness perception questionnaire (IPQ-R). Psychol Health. 2002;17(1):1–16.CrossRef
46.
Zurück zum Zitat Peterman AH, Fitchett G, Brady MJ, Hernandez L, Cella D. Measuring spiritual well-being in people with cancer: the functional assessment of chronic illness therapy—spiritual well-being scale (FACIT-Sp). Ann Behav Med. 2002;24(1):49–58.CrossRefPubMed Peterman AH, Fitchett G, Brady MJ, Hernandez L, Cella D. Measuring spiritual well-being in people with cancer: the functional assessment of chronic illness therapy—spiritual well-being scale (FACIT-Sp). Ann Behav Med. 2002;24(1):49–58.CrossRefPubMed
47.
Zurück zum Zitat Scheier MF, Carver CS, Bridges MW. Distinguishing optimism from neuroticism (and trait anxiety, self-mastery, and self-esteem): a reevaluation of the life orientation test. J Pers Soc Psychol. 1994;67(6):1063.CrossRefPubMed Scheier MF, Carver CS, Bridges MW. Distinguishing optimism from neuroticism (and trait anxiety, self-mastery, and self-esteem): a reevaluation of the life orientation test. J Pers Soc Psychol. 1994;67(6):1063.CrossRefPubMed
48.
Zurück zum Zitat Wright E, Kiely M, Johnston C, Smith A, Cull A, Selby P. Development and evaluation of an instrument to assess social difficulties in routine oncology practice. Qual Life Res. 2005;14(2):373–86.CrossRefPubMed Wright E, Kiely M, Johnston C, Smith A, Cull A, Selby P. Development and evaluation of an instrument to assess social difficulties in routine oncology practice. Qual Life Res. 2005;14(2):373–86.CrossRefPubMed
49.
Zurück zum Zitat Wright P, Smith AB, Keding A, Velikova G. The social difficulties inventory (SDI): development of subscales and scoring guidance for staff. Psychooncology. 2011;20(1):36–43. doi:10.1002/pon.1705.CrossRefPubMed Wright P, Smith AB, Keding A, Velikova G. The social difficulties inventory (SDI): development of subscales and scoring guidance for staff. Psychooncology. 2011;20(1):36–43. doi:10.​1002/​pon.​1705.CrossRefPubMed
50.
Zurück zum Zitat Arraras JI, Kuljanic-Vlasic K, Bjordal K, Yun YH, Efficace F, Holzner B, et al. EORTC QLQ-INFO26: a questionnaire to assess information given to cancer patients a preliminary analysis in eight countries. Psycho-Oncology. 2007;16(3):249–54.CrossRefPubMed Arraras JI, Kuljanic-Vlasic K, Bjordal K, Yun YH, Efficace F, Holzner B, et al. EORTC QLQ-INFO26: a questionnaire to assess information given to cancer patients a preliminary analysis in eight countries. Psycho-Oncology. 2007;16(3):249–54.CrossRefPubMed
51.
Zurück zum Zitat Funch DP, Marshall JR, Gebhardt GP. Assessment of a short scale to measure social support. Soc Sci Med. 1986;23(3):337–44.CrossRefPubMed Funch DP, Marshall JR, Gebhardt GP. Assessment of a short scale to measure social support. Soc Sci Med. 1986;23(3):337–44.CrossRefPubMed
52.
Zurück zum Zitat Lubeck DP, Spitz PW, Fries JF, Wolfe F, Mitchell DM, Roth SH. A multicenter study of annual health service utilization and costs in rheumatoid arthritis. Arthritis Rheum. 1986;29(4):488–93.CrossRefPubMed Lubeck DP, Spitz PW, Fries JF, Wolfe F, Mitchell DM, Roth SH. A multicenter study of annual health service utilization and costs in rheumatoid arthritis. Arthritis Rheum. 1986;29(4):488–93.CrossRefPubMed
53.
Zurück zum Zitat Bruce B, Fries JF. The Stanford Health Assessment Questionnaire: a review of its history, issues, progress, and documentation. J Rheumatol. 2003;30(1):167–78.PubMed Bruce B, Fries JF. The Stanford Health Assessment Questionnaire: a review of its history, issues, progress, and documentation. J Rheumatol. 2003;30(1):167–78.PubMed
54.
55.
Zurück zum Zitat Bruce B, Fries J. The health assessment questionnaire (HAQ). Clin Exp Rheumatol. 2005;23(5):S14.PubMed Bruce B, Fries J. The health assessment questionnaire (HAQ). Clin Exp Rheumatol. 2005;23(5):S14.PubMed
56.
Zurück zum Zitat EuroQol Group. EuroQol—a new facility for the measurement of health-related quality of life. Health policy (Amsterdam, Netherlands). 1990;16(3):199.CrossRef EuroQol Group. EuroQol—a new facility for the measurement of health-related quality of life. Health policy (Amsterdam, Netherlands). 1990;16(3):199.CrossRef
58.
Zurück zum Zitat Ware Jr JE, Sherbourne CD. The MOS 36-item short-form health survey (SF-36): I. Conceptual framework and item selection. Med Care. 1992:473–83. Ware Jr JE, Sherbourne CD. The MOS 36-item short-form health survey (SF-36): I. Conceptual framework and item selection. Med Care. 1992:473–83.
59.
Zurück zum Zitat Ware J, Kosinski M, Dewey J. How to score version 2 of the SF-36 health survey. QualityMetric Incorporated: Lincoln, RI; 2000. Ware J, Kosinski M, Dewey J. How to score version 2 of the SF-36 health survey. QualityMetric Incorporated: Lincoln, RI; 2000.
60.
Zurück zum Zitat Ware Jr JE, Kosinski M, Keller SD. A 12-item short-form health survey: construction of scales and preliminary tests of reliability and validity. Med Care. 1996;34(3):220–33.CrossRefPubMed Ware Jr JE, Kosinski M, Keller SD. A 12-item short-form health survey: construction of scales and preliminary tests of reliability and validity. Med Care. 1996;34(3):220–33.CrossRefPubMed
61.
Zurück zum Zitat Ware J, Kosinski M, Turner-Bowker D, Gandek B. SF-12v2: how to score version 2 of the SF-12 health survey. Lincoln, RI: QualityMetric Incorporated; 2002. Ware J, Kosinski M, Turner-Bowker D, Gandek B. SF-12v2: how to score version 2 of the SF-12 health survey. Lincoln, RI: QualityMetric Incorporated; 2002.
62.
Zurück zum Zitat Ferrans CE. Definitions and conceptual models of quality of life. In: Lipscomb J, Gotay C, Snyder C, editors. Outcomes assessment in cancer. Cambridge: Cambridge University Press; 2005. p. 14–31. Ferrans CE. Definitions and conceptual models of quality of life. In: Lipscomb J, Gotay C, Snyder C, editors. Outcomes assessment in cancer. Cambridge: Cambridge University Press; 2005. p. 14–31.
63.
Zurück zum Zitat Cella DF, Tulsky DS, Gray G, Sarafian B, Linn E, Bonomi A, et al. The functional assessment of cancer therapy scale: development and validation of the general measure. J Clin Oncol. 1993;11(3):570–9.CrossRefPubMed Cella DF, Tulsky DS, Gray G, Sarafian B, Linn E, Bonomi A, et al. The functional assessment of cancer therapy scale: development and validation of the general measure. J Clin Oncol. 1993;11(3):570–9.CrossRefPubMed
64.
Zurück zum Zitat Avis NE, Smith KW, McGraw S, Smith RG, Petronis VM, Carver CS. Assessing quality of life in adult cancer survivors (QLACS). Qual Life Res. 2005;14(4):1007–23.CrossRefPubMed Avis NE, Smith KW, McGraw S, Smith RG, Petronis VM, Carver CS. Assessing quality of life in adult cancer survivors (QLACS). Qual Life Res. 2005;14(4):1007–23.CrossRefPubMed
65.
Zurück zum Zitat Nicolaije KA, Ezendam NP, Vos MC, Pijnenborg JM, Boll D, Boss EA, et al. Impact of an automatically generated cancer survivorship care plan on patient-reported outcomes in routine clinical practice: longitudinal outcomes of a pragmatic, cluster randomized trial. J Clin Oncol. 2015;33(31):3550–9.CrossRefPubMed Nicolaije KA, Ezendam NP, Vos MC, Pijnenborg JM, Boll D, Boss EA, et al. Impact of an automatically generated cancer survivorship care plan on patient-reported outcomes in routine clinical practice: longitudinal outcomes of a pragmatic, cluster randomized trial. J Clin Oncol. 2015;33(31):3550–9.CrossRefPubMed
66.
Zurück zum Zitat Nicolaije KA, Husson O, Ezendam NP, Vos MC, Kruitwagen RF, Lybeert ML, et al. Endometrial cancer survivors are unsatisfied with received information about diagnosis, treatment and follow-up: a study from the population-based PROFILES registry. Patient Educ Couns. 2012;88(3):427–35. doi:10.1016/j.pec.2012.05.002.CrossRefPubMed Nicolaije KA, Husson O, Ezendam NP, Vos MC, Kruitwagen RF, Lybeert ML, et al. Endometrial cancer survivors are unsatisfied with received information about diagnosis, treatment and follow-up: a study from the population-based PROFILES registry. Patient Educ Couns. 2012;88(3):427–35. doi:10.​1016/​j.​pec.​2012.​05.​002.CrossRefPubMed
67.
Zurück zum Zitat Oerlemans S, Issa DE, van den Broek EC, Nijziel MR, Coebergh JWW, Huijgens PC, et al. Health-related quality of life and persistent symptoms in relation to (R-) CHOP14,(R-) CHOP21, and other therapies among patients with diffuse large B-cell lymphoma: results of the population-based PHAROS-registry. Ann Hematol. 2014;93(10):1705–15.CrossRefPubMed Oerlemans S, Issa DE, van den Broek EC, Nijziel MR, Coebergh JWW, Huijgens PC, et al. Health-related quality of life and persistent symptoms in relation to (R-) CHOP14,(R-) CHOP21, and other therapies among patients with diffuse large B-cell lymphoma: results of the population-based PHAROS-registry. Ann Hematol. 2014;93(10):1705–15.CrossRefPubMed
68.
Zurück zum Zitat van de Poll-Franse LV, Pijnenborg JM, Boll D, Vos MC, van den Berg H, Lybeert ML, et al. Health related quality of life and symptoms after pelvic lymphadenectomy or radiotherapy vs. no adjuvant regional treatment in early-stage endometrial carcinoma: a large population-based study. Gynecol Oncol. 2012;127(1):153–60.CrossRefPubMed van de Poll-Franse LV, Pijnenborg JM, Boll D, Vos MC, van den Berg H, Lybeert ML, et al. Health related quality of life and symptoms after pelvic lymphadenectomy or radiotherapy vs. no adjuvant regional treatment in early-stage endometrial carcinoma: a large population-based study. Gynecol Oncol. 2012;127(1):153–60.CrossRefPubMed
70.
Zurück zum Zitat Treweek S, Lockhart P, Pitkethly M, Cook JA, Kjeldstrøm M, Johansen M et al. Methods to improve recruitment to randomised controlled trials: Cochrane systematic review and meta-analysis. BMJ Open. 2013;3(2). doi: 10.1136/bmjopen-2012-002360. Treweek S, Lockhart P, Pitkethly M, Cook JA, Kjeldstrøm M, Johansen M et al. Methods to improve recruitment to randomised controlled trials: Cochrane systematic review and meta-analysis. BMJ Open. 2013;3(2). doi: 10.​1136/​bmjopen-2012-002360.
73.
74.
Zurück zum Zitat Roder DM, Fong KM, Brown MP, Zalcberg J, Wainwright CE. Realising opportunities for evidence-based cancer service delivery and research: linking cancer registry and administrative data in Australia. Eur J Cancer Care (Engl). 2014;23(6):721–7. doi:10.1111/ecc.12242.CrossRef Roder DM, Fong KM, Brown MP, Zalcberg J, Wainwright CE. Realising opportunities for evidence-based cancer service delivery and research: linking cancer registry and administrative data in Australia. Eur J Cancer Care (Engl). 2014;23(6):721–7. doi:10.​1111/​ecc.​12242.CrossRef
75.
Zurück zum Zitat Roder D, Creighton N, Baker D, Walton R, Aranda S, Currow D. Changing roles of population-based cancer registries in Australia. Aust Health Rev. 2015;39(4):425–8. doi:10.1071/ah14250.CrossRefPubMed Roder D, Creighton N, Baker D, Walton R, Aranda S, Currow D. Changing roles of population-based cancer registries in Australia. Aust Health Rev. 2015;39(4):425–8. doi:10.​1071/​ah14250.CrossRefPubMed
76.
Zurück zum Zitat Ayanian JZ, Jacobsen PB. Enhancing research on cancer survivors. J Clin Oncol. 2006;24(32):5149–53.CrossRefPubMed Ayanian JZ, Jacobsen PB. Enhancing research on cancer survivors. J Clin Oncol. 2006;24(32):5149–53.CrossRefPubMed
77.
Zurück zum Zitat Ganz PA. Why and how to study the fate of cancer survivors: observations from the clinic and the research laboratory. Eur J Cancer. 2003;39(15):2136–41.CrossRefPubMed Ganz PA. Why and how to study the fate of cancer survivors: observations from the clinic and the research laboratory. Eur J Cancer. 2003;39(15):2136–41.CrossRefPubMed
78.
Zurück zum Zitat Beskow LM, Sandler RS, Weinberger M. Research recruitment through US central cancer registries: balancing privacy and scientific issues. Am J Public Health. 2006;96(11):1920.CrossRefPubMedPubMedCentral Beskow LM, Sandler RS, Weinberger M. Research recruitment through US central cancer registries: balancing privacy and scientific issues. Am J Public Health. 2006;96(11):1920.CrossRefPubMedPubMedCentral
79.
Zurück zum Zitat Barrett G, Cassell JA, Peacock JL, Coleman MP. National survey of British public's views on use of identifiable medical data by the National Cancer Registry. BMJ. 2006;332(7549):1068–72.CrossRefPubMedPubMedCentral Barrett G, Cassell JA, Peacock JL, Coleman MP. National survey of British public's views on use of identifiable medical data by the National Cancer Registry. BMJ. 2006;332(7549):1068–72.CrossRefPubMedPubMedCentral
80.
Zurück zum Zitat Smith TG, Castro KM, Troeschel AN, Arora NK, Lipscomb J, Jones SM, et al. The rationale for patient-reported outcomes surveillance in cancer and a reproducible method for achieving it. Cancer. 2016;122(3):344–51. doi:10.1002/cncr.29767.CrossRefPubMed Smith TG, Castro KM, Troeschel AN, Arora NK, Lipscomb J, Jones SM, et al. The rationale for patient-reported outcomes surveillance in cancer and a reproducible method for achieving it. Cancer. 2016;122(3):344–51. doi:10.​1002/​cncr.​29767.CrossRefPubMed
83.
Zurück zum Zitat Brundage M, Blazeby J, Revicki D, Bass B, de Vet H, Duffy H, et al. Patient-reported outcomes in randomized clinical trials: development of ISOQOL reporting standards. Qual Life Res. 2013;22(6):1161–75. doi:10.1007/s11136-012-0252-1.CrossRefPubMed Brundage M, Blazeby J, Revicki D, Bass B, de Vet H, Duffy H, et al. Patient-reported outcomes in randomized clinical trials: development of ISOQOL reporting standards. Qual Life Res. 2013;22(6):1161–75. doi:10.​1007/​s11136-012-0252-1.CrossRefPubMed
84.
Zurück zum Zitat Basch E, Abernethy AP, Mullins CD, Reeve BB, Smith ML, Coons SJ, et al. Recommendations for incorporating patient-reported outcomes into clinical comparative effectiveness research in adult oncology. J Clin Oncol. 2012;30(34):4249–55. doi:10.1200/jco.2012.42.5967.CrossRefPubMed Basch E, Abernethy AP, Mullins CD, Reeve BB, Smith ML, Coons SJ, et al. Recommendations for incorporating patient-reported outcomes into clinical comparative effectiveness research in adult oncology. J Clin Oncol. 2012;30(34):4249–55. doi:10.​1200/​jco.​2012.​42.​5967.CrossRefPubMed
85.
Zurück zum Zitat Reeve BB, Wyrwich KW, Wu AW, Velikova G, Terwee CB, Snyder CF, et al. ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research. Qual Life Res. 2013;22(8):1889–905. doi:10.1007/s11136-012-0344-y.CrossRefPubMed Reeve BB, Wyrwich KW, Wu AW, Velikova G, Terwee CB, Snyder CF, et al. ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research. Qual Life Res. 2013;22(8):1889–905. doi:10.​1007/​s11136-012-0344-y.CrossRefPubMed
86.
Zurück zum Zitat Journal of clinical epidemiology. 2010/08/06 ed 2010. The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008; p. 1179–94. Journal of clinical epidemiology. 2010/08/06 ed 2010. The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008; p. 1179–94.
89.
Zurück zum Zitat Pereira J, Green E, Molloy S, Dudgeon D, Howell D, Krzyzanowska MK et al. Population-based standardized symptom screening: cancer care ontario's edmonton symptom assessment system and performance status initiatives. Journal of Oncology Practice. 2014;10(3). Pereira J, Green E, Molloy S, Dudgeon D, Howell D, Krzyzanowska MK et al. Population-based standardized symptom screening: cancer care ontario's edmonton symptom assessment system and performance status initiatives. Journal of Oncology Practice. 2014;10(3).
Metadaten
Titel
Cancer survivorship monitoring systems for the collection of patient-reported outcomes: a systematic narrative review of international approaches
verfasst von
N Corsini
J Fish
I Ramsey
G Sharplin
I Flight
R Damarell
B Wiggins
C Wilson
D Roder
M Eckert
Publikationsdatum
03.04.2017
Verlag
Springer US
Erschienen in
Journal of Cancer Survivorship / Ausgabe 4/2017
Print ISSN: 1932-2259
Elektronische ISSN: 1932-2267
DOI
https://doi.org/10.1007/s11764-017-0607-2

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