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Supportive Care in Cancer

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Open Access 01-02-2017 | Original Article

Health-related problems in adult cancer survivors: development and validation of the Cancer Survivor Core Set

Authors: O.P. Geerse, K. Wynia, M. Kruijer, M.J. Schotsman, T.J.N. Hiltermann, A.J. Berendsen

Published in: Supportive Care in Cancer | Issue 2/2017

Abstract

Purpose

Improved survival rates from cancer have increased the need to understand the health-related problems of cancer treatment. We aimed to develop and validate the “Cancer Survivor Core Set” representing the most relevant health-related problems in adult cancer survivors using the International Classification of Functioning, Disability, and Health (ICF).

Methods

First, a Delphi study was conducted to select ICF categories representing the most relevant health-related problems. There were three Dutch expert panels, one each for lung, colorectal, and breast cancer. Each panel comprised lay experts and professionals. The experts reached within- and between-panel consensus in two rounds (≥70 % agreement). Second, a validation study was performed. Generic cancer survivorship questionnaires assessing health-related problems or quality of life among cancer survivors were selected. Items of selected questionnaires were linked to the best-fitting ICF category and to the selected ICF categories from the Delphi study, respectively.

Results

In total, 101 experts were included, of which 76 participated in both rounds, reaching consensus on 18 ICF categories. The Distress Thermometer and Problem List, the Impact of Cancer (v2), and the Quality of Life in Adult Cancer Survivors questionnaires were selected for the validation study, which led to the inclusion of one additional ICF category.

Conclusions

The developed Cancer Survivor Core Set consisted of 19 ICF categories representing the most relevant health-related problems in adult cancer survivors: five from the “body functions and structures” component, eight from the “activities and participation” component, and six from the “environmental factors” component.

Highlights

• Many adult cancer survivors have persistent health-related problems.

• The Cancer Survivor Core Set was developed using the Delphi method.

• The patients’ perspectives were prioritized in this Delphi study

• Content validity was confirmed by validated cancer survivorship questionnaires.

• The Cancer Survivor Core Set may help optimize care for cancer survivors.

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Berrino F, Verdecchia A, Lutz JM, Lombardo C, Micheli A, Capocaccia R (2009) Comparative cancer survival information in Europe. Eur J Cancer 45:901–908. doi:10.1016/j.ejca.2009.01.018 CrossRefPubMed

Maddams J, Utley M, Møller H (2012) Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer 107:1195–1202. doi:10.1038/bjc.2012.366 CrossRefPubMedPubMedCentral

Edwards BK, Noone AM, Mariotto AB, Simard EP, Boscoe FP, Henley SJ et al (2014) Annual Report to the Nation on the status of cancer, 1975-2010, featuring prevalence of comorbidity and impact on survival among persons with lung, colorectal, breast, or prostate cancer. Cancer 120:1290–1314. doi:10.1002/cncr.28509 CrossRefPubMed

Harrington CB, Hansen JA, Moskowitz M, Todd BL, Feuerstein M (2010) It’s not over when it’s over: long-term symptoms in cancer survivors—a systematic review. Int J Psychiatry Med 40:163–181CrossRefPubMed

Stein KD, Syrjala KL, Andrykowski MA (2008) Physical and psychological long-term and late effects of cancer. Cancer 112:2577–2592. doi:10.1002/cncr.23448 CrossRefPubMed

Stanton AL (2006) Psychosocial concerns and interventions for cancer survivors. J Clin Oncol 24:5132–5137. doi:10.1200/JCO.2006.06.8775 CrossRefPubMed

de Boer AGEM, Taskila T, Ojajärvi A, van Dijk FJH, Verbeek JHAM (2009) Cancer survivors and unemployment: a meta-analysis and meta-regression. JAMA 301:753–762. doi:10.1001/jama.2009.187 CrossRefPubMed

Ell K, Xie B, Wells A, Nedjat-Haiem F, Lee PJ, Vourlekis B (2008) Economic stress among low-income women with cancer: effects on quality of life. Cancer 112:616–625. doi:10.1002/cncr.23203 CrossRefPubMed

Howell D, Hack TF, Oliver TK, Chulak T, Mayo S, Aubin M et al (2012) Models of care for post-treatment follow-up of adult cancer survivors: a systematic review and quality appraisal of the evidence. J Cancer Surviv 6:359–371. doi:10.1007/s11764-012-0232-z CrossRefPubMed

10.

Avis NE, Smith KW, McGraw S, Smith RG, Petronis VM, Carver CS (2005) Assessing Quality of Life in Adult Cancer Survivors (QLACS). Qual Life Res 14:1007–1023. doi:10.1007/s11136-004-2147-2 CrossRefPubMed

11.

Dis FW, Mols F, Vingerhoets AJJM, Ferrell B, Poll-Franse LV (2006) A validation study of the Dutch version of the Quality of Life–Cancer Survivor (QOL-CS) questionnaire in a group of prostate cancer survivors. Qual Life Res 15:1607–1612. doi:10.1007/s11136-006-0015-y CrossRefPubMed

12.

Brach M, Cieza A, Stucki G, Füßl M, Cole A, Ellerin BE et al (2004) ICF Core Sets for breast cancer. J Rehabil Med 36:121–127. doi:10.1080/16501960410016811 CrossRef

13.

Yen T-H, Lin L-F, Wei T-S, Chang K-H, Wang Y-H, Liou T-H (2014) Delphi-based assessment of fall-related risk factors in acute rehabilitation settings according to the International Classification of Functioning, Disability and Health. Arch Phys Med Rehabil 95:50–57. doi:10.1016/j.apmr.2013.09.006 CrossRefPubMed

14.

Hsu C, Sandford B (2007) The Delphi technique: making sense of consensus. Pract Assess, Res Eval 12:1–8. doi:10.1016/S0169-2070(99)00018-7

15.

Cieza A, Brockow T, Ewert T, Amman E, Kollerits B, Chatterji S et al (2002) Linking health-status measurements to the International Classification of Functioning, Disability and Health. J Rehabil Med 34:205–210. doi:10.1080/165019702760279189 CrossRefPubMed

16.

Powell C (2003) The Delphi technique: myths and realities. Methodol Issues Nurs Res 41:376–382

17.

Hasson F, Keeney S, McKenna H (2000) Research guidelines for the Delphi survey technique. J Adv Nurs 32:1008–1015. doi:10.1046/j.1365-2648.2000.t01-1-01567.x PubMed

18.

Ganz PA (2011) The “three Ps” of cancer survivorship care. BMC Med 9:14. doi:10.1186/1741-7015-9-14 CrossRefPubMedPubMedCentral

19.

Hewitt M, Greenfield S, Stovall E (2006) From cancer patient to cancer survivor: lost in transition. Committee on cancer survivorship: improving care and quality of life national cancer policy board. Institute of Medicine and National Research Council of the National Academies Press, Washington, DC

20.

DeSantis CE, Lin CC, Mariotto AB, Siegel RL, Stein KD, Kramer JL et al (2014) Cancer treatment and survivorship statistics, 2014. CA Cancer J Clin 64:252–271. doi:10.3322/caac.21235 CrossRefPubMed

21.

World Health Organization (2002) Towards a common language for functioning , disability and health ICF. Int Classif 1149:1–22

22.

Wynia K, Middel B, Van Dijk JP, De Ruiter H, Lok W, Ha De Keyser J et al (2006) Broadening the scope on health problems among the chronically neurologically ill with the International Classification of Functioning (ICF). Disabil Rehabil 28:1445–1454. doi:10.1080/09638280600638356 CrossRefPubMed

23.

Spoorenberg SLW, Reijneveld SA, Middel B, Uittenbroek RJ, Kremer HPH, Wynia K (2015) The Geriatric ICF Core Set reflecting health-related problems in community-living older adults aged 75 years and older without dementia: development and validation. Disabil Rehabil 00:1–7. doi:10.3109/09638288.2015.1024337

24.

Polit DF, Beck CT (2006) The content validity index: are you sure you know what’s being reported? Critique and recommendations. Res Nurs Health 29:489–497. doi:10.1002/nur.20147 CrossRefPubMed

25.

Cieza A, Geyh S, Chatterji S, Kostanjsek N, Üstün B, Stucki G (2005) ICF linking rules: an update based on lessons learned. J Rehabil Med 37:212–218. doi:10.1080/16501970510040263 CrossRefPubMed

26.

Ma X, Zhang J, Zhong W, Shu C, Wang F, Wen J et al (2014) The diagnostic role of a short screening tool—the distress thermometer: a meta-analysis. Support Care Cancer 22:1741–1755. doi:10.1007/s00520-014-2143-1 CrossRefPubMed

27.

Holland JC, Reznik I (2005) Pathways for psychosocial care of cancer survivors. Cancer 104:2624–2637. doi:10.1002/cncr.21252 CrossRefPubMed

28.

Crespi CM, Ganz PA, Petersen L, Castillo A, Caan B (2008) Refinement and psychometric evaluation of the impact of cancer scale. J Natl Cancer Inst 100:1530–1541. doi:10.1093/jnci/djn340 CrossRefPubMedPubMedCentral

29.

Weigl M, Cieza A, Andersen C, Kollerits B, Amann E, Stucki G (2004) Identification of relevant ICF categories in patients with chronic health conditions: a Delphi exercise. J Rehabil Med (44 Suppl):12–21. doi:10.1080/16501960410015443

30.

Gerritsen A, Jacobs M, Henselmans I, van Hattum J, Efficace F, Creemers G-J et al (2016) Developing a core set of patient-reported outcomes in pancreatic cancer: a Delphi survey. Eur J Cancer 57:68–77. doi:10.1016/j.ejca.2016.01.001 CrossRefPubMed

31.

Hopman SMJ, Merks JHM, De Borgie CAJM, Aalfs CM, Biesecker LG, Cole T et al (2013) The development of a clinical screening instrument for tumour predisposition syndromes in childhood cancer patients. Eur J Cancer 49:3247–3254. doi:10.1016/j.ejca.2013.06.015 CrossRefPubMedPubMedCentral

Title: Health-related problems in adult cancer survivors: development and validation of the Cancer Survivor Core Set
Authors: O.P. Geerse
K. Wynia
M. Kruijer
M.J. Schotsman
T.J.N. Hiltermann
A.J. Berendsen
Publication date: 01-02-2017
Publisher: Springer Berlin Heidelberg
Published in: Supportive Care in Cancer / Issue 2/2017
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI: https://doi.org/10.1007/s00520-016-3439-0

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Abstract

Purpose

Methods

Results

Conclusions

Highlights

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