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Assessing the content based on ICF and quality based on COSMIN criteria of patient-reported outcome measures of functioning in breast cancer survivors: a systematic review

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Abstract

Purpose

To identify currently used patient-reported outcome measures (PROMs) to evaluate disability in breast cancer survivors (BC) and critically evaluate their content and measurement properties.

Methods

Four electronic databases (PubMed, EMBASE, CINAHL, Scopus and Google Scholar) were searched from 2001 to February 2021. PRISMA guidelines were followed. The content of the included PROM was evaluated by linking the items of the questionnaires to the International Classification of Functioning, Disability and Health (ICF) Core Set for BC using standard linking rules. Methodological quality and measurement properties were assessed using the COSMIN checklist. Qualitative synthesis was used to summarize the evidence on content validity and measurement properties. The overall quality of evidence on each measurement property was provided using GRADE principles.

Results

Ten eligible studies reported measurement properties of seven PROMs. The content of included PROMs mostly focused on disability (70% of items), and less on body function and structure (23%) or environmental factors (6%). There was high linkage to The Comprehensive Core Set for BC, Q-DASH (100%), UEFI (95%) and DASH (92%). The Core Set Unique Disability Representation for DASH, and WHODAS2 was 39% and BCSQ-BC, Lymph-ICF was 34%. BCSQ-BC, and Lymph-ICF represented 32, and 20% of the content of the Core Set for BC, respectively, however, the other questionnaires covered less than 20% of the content of the Core Set. High quality of evidence supports sufficient results for internal consistency, testretest, and measurement error for BCSQ-BC, Lymph-ICF, DASH and WHODAS2.

Conclusions

Despite a lack of evidence on all-important clinical measurement, two generic (DASH and WHODAS2) and two disease-specific (BCSQ-BC, Lymph-ICF) PROM demonstrated emerging evidence of adequate measurement properties. The stronger alignment of the BCSQ-BC to the breast cancer ICF core set makes it preferable is a disease-specific measure. The Lymph-ICF is recommended where lymphedema is a specific focus. The DASH and WHODAS2 might be most useful where patients with a variety of upper extremity conditions, including breast cancer survivors, are being evaluated in the clinic or research study.

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References

  1. Tarver T. Cancer facts and figures american cancer society (ACS). J Consum Health Internet. 2012;16(3):366–7.

    Google Scholar 

  2. Bray F, Ferlay J, Soerjomataram I, Siegel RL, Torre LA, Jemal A. Global cancer statistics GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA: Cancer J Clin. 2018;68(6):394–424.

    Google Scholar 

  3. Ibrahim M, Muanza T, Smirnow N, Sateren W, Fournier B, Kavan P, et al. Time course of upper limb function and return-to-work post-radiotherapy in young adults with breast cancer: a pilot randomized control trial on effects of targeted exercise program. J Cancer Surviv. 2017;11(6):791–9.

    PubMed  Google Scholar 

  4. Miller KD, Nogueira L, Mariotto AB, Rowland JH, Yabroff KR, Alfano CM, et al. Cancer treatment and survivorship statistics. CA: Cancer J Clin. 2019;69(5):363–85.

    Google Scholar 

  5. Mousavi SA, Kasaeian A, Pourkasmaee M, Ghavamzadeh A, Alimoghaddam K, Vaezi M, et al. Assessing the prognostic factors, survival, and recurrence incidence of triple negative breast cancer patients, a single center study in Iran. PLoS ONE. 2019;14(1):e0208701.

    CAS  PubMed  PubMed Central  Google Scholar 

  6. Rundquist PJ, Behrens BA, Happel AS, Kennedy K, Biggers L. Shoulder kinematics and function in breast cancer survivors with unilateral lymphedema: an observational study. Rehabilit Oncol. 2015;33(1):41–6.

    Google Scholar 

  7. Leblanc M, Stineman M, Demichele A, Stricker C, Mao JJ. Validation of QUICKDASH outcome measure in breast cancer survivors for upper extremity disability. Arch Phys Med Rehabil. 2014;95(3):493–8.

    PubMed  Google Scholar 

  8. Smoot B, Wong J, Cooper B, Wanek L, Topp K, Byl N, et al. Upper extremity impairments in women with or without lymphedema following breast cancer treatment. J Cancer Surviv. 2010;4(2):167–78.

    PubMed  PubMed Central  Google Scholar 

  9. Brandt DE, Ho P-S, Chan L, Rasch EK. Conceptualizing disability in US national surveys: application of the world health organization’s (WHO) international classification of functioning, disability, and health (ICF) FRAMEWORK. Qual Life Res. 2014;23(10):2663–71.

    PubMed  Google Scholar 

  10. Mayo NE, Poissant L, Ahmed S, Finch L, Higgins J, Salbach NM, et al. Incorporating the international classification of functioning, disability, and health (ICF) into an electronic health record to create indicators of function: proof of concept using the SF-12. J Am Med Inform Assoc. 2004;11(6):514–22.

    PubMed  PubMed Central  Google Scholar 

  11. Stucki G, Cieza A, Ewert T, Kostanjsek N, Chatterji S, Ustun TB. Application of the International Classification of Functioning, Disability and Health (ICF) in clinical practice. Disabil Rehabilit. 2002;24(5):281–282.

    CAS  PubMed  Google Scholar 

  12. Shamley DR, Srinanaganathan R, Weatherall R, Oskrochi R, Watson M, Ostlere S, et al. Changes in shoulder muscle size and activity following treatment for breast cancer. Breast Cancer Res Treat. 2007;106(1):19–27.

    PubMed  Google Scholar 

  13. Ewert T. Die internationale klassifikation der funktionsfähigkeit, behinderung und gesundheit (icf) als klassifikationshilfe der langfristigen krankheitsfolgen. Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz. 2012;55(4):459–67.

    CAS  PubMed  Google Scholar 

  14. Khan F, Amatya B, Demetrios M, Pallant JF. Relevance and completeness of the international classification of functioning, disability and health (ICF) comprehensive breast canc er core set: the patient perspective in an australian community cohort. J Rehabil Med. 2012;44(7):570–80.

    PubMed  Google Scholar 

  15. Miller KL. Patient centered care: A path to better health outcomes through engagement and activation. NeuroRehabilitation. [cites 2016 Oct 14] [cited 2021 Jul 8];39(4):465–70. Available from: https://pubmed.ncbi.nlm.nih.gov/27689606/

  16. Brach M, Cieza A, Stucki G, Füßl M, Cole A, Ellerin BE, et al. ICF Core Sets for breast cancer. J Rehabilit Med Suppl. 2004;36:121–7.

    Google Scholar 

  17. Brockow T, Duddeck K, Geyh S, Schwarzkopf SR, Weigl M, Franke T, et al. Identifying the concepts contained in outcome measures of clinical trials on breast cancer using the international classification of functioning, disability and health as a reference. J Rehabil Med Suppl. 2004;44:43–8.

    Google Scholar 

  18. Jelsma J. Use of the international classification of functioning, disability and health: a literature survey. J Rehabil Med. 2009;41:1–12.

    PubMed  Google Scholar 

  19. Hayes S, Battistutta D, Newman B. Objective and subjective upper body function six months following diagnosis of breast cancer. Breast Cancer Res Treat. 2005;94(1):1–10.

    PubMed  Google Scholar 

  20. Yang EJ, Kim BR, Shin HI, Lim JY. Use of the international classification of functioning, disability and health as a functional assessment tool for breast cancer survivors. J Breast Cancer. 2012;15(1):43–50.

    PubMed  PubMed Central  Google Scholar 

  21. Harrington S, Michener LA, Kendig T, Miale S, George SZ. Patient-reported upper extremity outcome measures used in breast cancer survivors: A systematic review. Arch Phys Med Rehabilit. 2014;95(1):153–62 (W.B. Saunders).

    Google Scholar 

  22. MacDermid JC. ICF Linking and Cognitive interviewing are complementary. - Google Scholar. Frontiers in Rehabilitation Sciences. 2021 [cited 2021 Oct 15];2:1–15. Available from: https://scholar.google.com/scholar?hl=en&as_sdt=0%2C5&q=ICF+Linking+and+Cognitive+Interviewing+Are+Complementary+Methods+for+Optimizing+Content+Validity+of+Outcome+Measures%3A+An+Integrated+Methods+Review&btnG=

  23. Prinsen CAC, Mokkink LB, Bouter LM, Alonso J, Patrick DL, de Vet HCW, et al. COSMIN guideline for systematic reviews of patient-reported outcome measures. Qual Life Res. 2018;27(5):1147–57.

    CAS  PubMed  PubMed Central  Google Scholar 

  24. Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ. 2021;29:372.

    Google Scholar 

  25. Cieza A, Fayed N, Bickenbach J, Prodinger B. Refinements of the ICF Linking Rules to strengthen their potential for establishing comparability of health information. [cited 2016 Feb 27] [cited 2021 Sep 22];41(5):574–83. Available from: https://www.tandfonline.com/doi/abs/https://doi.org/10.3109/09638288.2016.1145258

  26. Cieza A, Geyh S, Chatterji S, Kostanjsek N, Üstün B, Stucki G. ICF linking rules: an update based on lessons learned. J Rehabil Med. 2005;37(4):212–8.

    PubMed  Google Scholar 

  27. MacDermid JC. ICF Linkage indicators. 2014

  28. Mokkink LB, de Vet HCW, Prinsen CAC, Patrick DL, Alonso J, Bouter LM, et al. COSMIN risk of bias checklist for systematic reviews of patient-reported outcome measures. Qual Life Res. 2018;27(5):1171–9.

    CAS  PubMed  Google Scholar 

  29. Shafiee E, Farzad M, Karbalaei M. A systematic review of self-reported outcome measures assessing disability following hand and upper extremity conditions in persian population. Arch Bone Jt Surg. 2021;9(2):141.

    PubMed  PubMed Central  Google Scholar 

  30. Prinsen CAC, Vohra S, Rose MR, Boers M, Tugwell P, Clarke M, et al. How to select outcome measurement instruments for outcomes included in a “core outcome set” – a practical guideline. Trials. 2016;17(1):449.

    PubMed  PubMed Central  Google Scholar 

  31. Terwee CB, Bot SDM, de Boer MR, van der Windt DAWM, Knol DL, Dekker J, et al. Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol. 2007;60(1):34–42.

    PubMed  Google Scholar 

  32. Shafiee E, MacDermid J, Farzad M, Karbalaei M. A systematic review and meta-analysis of patient-rated wrist (and Hand) evaluation (PRWE/PRWHE) measurement properties, translation, and/ or cross-cultural adaptation. Disabil Rehabilit. 2021. p. 1–15. https://doi.org/10.1080/09638288.2021.1970250.

    Article  Google Scholar 

  33. Tavakol M, Dennick R. Making sense of Cronbach’s alpha. Int J Med Educ. 2011;2:53.

    PubMed  PubMed Central  Google Scholar 

  34. Bobos P, Nazari G, Lu Z, MacDermid JC. Measurement Properties of the hand grip strength assessment: a systematic review with meta-analysis. Arch Phys Med Rehabil. 2020;101(3):553–65.

    PubMed  Google Scholar 

  35. Evans JD. Straightforward statistics for the behavioral sciences. - PsycNET. Thomson Brooks/Cole Publishing Co.1996

  36. Shafiee E, MacDermid JC, Walton D, Vincent JI, Grewal R. Psychometric properties and cross-cultural adaptation of the patient-rated tennis elbow evaluation (PRTEE) a systematic review and meta-analysis. Disabil Rehabilit. 2021. p.1–16. https://doi.org/10.1080/09638288.2021.1938248.

    Article  Google Scholar 

  37. Balshem H, Helfand M, Schünemann HJ, Oxman AD, Kunz R, Brozek J, et al. GRADE guidelines: 3 rating the quality of evidence. J Clin Epidemiology. 2011;64(4):401–6.

    Google Scholar 

  38. Davies C, Brockopp D, Moe K. Internal consistency of the disability of arm, shoulder and hand (dash) outcome measure in assessing functional status among breast cancer survivors. Rehabilit Oncol. 2013;31(4):6–12.

    Google Scholar 

  39. Davies C, Brockopp D, Moe K. Test-retest and internal consistency of the disability of arm, shoulder and hand (DASH) outcome measure in assessing functional status among breast cancer survivors with lymphedema. Rehabilit Oncol. 2015;33(1):28–31.

    Google Scholar 

  40. Davies CC, Lengerich A, Bugajski A, Brockopp D. Detecting change in activity using the patient-specific functional scale with breast cancer survivors. Rehabilit Oncol. 2018;36(2):117–22.

    Google Scholar 

  41. Binkley JM, Stratford P, Kirkpatrick S, Farley CR, Okoli J, Gabram S. Estimating the reliability and validity of the upper extremity functional index in women after breast cancer surgery. Clin Breast Cancer. 2018;18(6):e1261–7.

    PubMed  Google Scholar 

  42. Devoogdt N, Van Kampen M, Geraerts I, Coremans T, Christiaens M-R. Lymphoedema functioning, disability and health questionnaire (Lymph-ICF): reliability and validity. Phys Ther. 2011;91(6):944–57.

    PubMed  Google Scholar 

  43. VriezeTessa D, VosLore, GebruersNick, GroefAn D, DamsLore, GuchtElien V der, et al. Revision of the lymphedema functioning, disability and health questionnaire for upper limb lymphedema (Lymph-ICF-UL) Reliability and Validity. 2019;17(3):347–55. https://home.liebertpub.com/lrb

  44. Vrieze T De, Gebruers N, Nevelsteen I, Tjalma WAA, Thomis S, Groef A De, et al. Responsiveness of the lymphedema functioning, disability, and health questionnaire for upper limb lymphedema in patients with breast cancer-related lymphedema. 2020;18(4):365–73. https://home.liebertpub.com/lrb

  45. Yang EJ, Shin E-K, Shin H-I, Lim J-Y. Psychometric properties of scale constructed from the international classification of functioning, disability and health (ICF) core set for breast cancer based on Rasch analysis. Support Care Cancer. 2014;22(10):2839–49.

    PubMed  Google Scholar 

  46. Zhao HP, Liu Y, Li HL, Ma L, Zhang YJ, Wang J. Activity limitation and participation restrictions of breast cancer patients receiving chemotherapy: psychometric properties and validation of the Chinese version of the WHODAS 2.0. Qual Life Res. 2012;22(4):897–906.

    PubMed  Google Scholar 

  47. Terwee CB, Prinsen CAC, Chiarotto A, Westerman MJ, Patrick DL, Alonso J, et al. COSMIN methodology for evaluating the content validity of patient-reported outcome measures: a delphi study. Qual Life Res. 2018;27(5):1159–70.

    CAS  PubMed  PubMed Central  Google Scholar 

  48. de Carvalho FN, Bergmann A, Koifman RJ. Functionality in women with breast cancer: the use of international classification of functioning, disability and health (ICF) in clinical practice. J Phys Ther Sci. 2014;26(5):721–30.

    Google Scholar 

  49. Befort CA, Austin H, Klemp JR. Weight control needs and experiences among rural breast cancer survivors. Psychooncology. 2011;20(10):1069–75.

    PubMed  Google Scholar 

  50. Bornbaum CC, Doyle PC, Skarakis-Doyle E, Theurer JA. A critical exploration of the international classification of functioning, disability, and health (ICF) framework from the perspective of oncology: recommendations for revision. J Multidiscip Healthc. 2013;8(6):75–86.

    Google Scholar 

  51. Harrington S, Padua D, Battaglini C, Michener LA, Giuliani C, Myers J, et al. Comparison of shoulder flexibility, strength, and function between breast cancer survivors and healthy participants. J Cancer Surviv. 2011;5(2):167–74.

    PubMed  Google Scholar 

  52. Alpozgen AZ, Ozdincler AR, Karanlik H, Agaoglu FY, Narin AN. Effectiveness of pilates-based exercises on upper extremity disorders related with breast cancer treatment. Eur J Cancer Care. 2017;26(6):e12532s.

    Google Scholar 

  53. Lee BG, Kim JK, Choi SH, Ahn HC, Chung MS. Is immediate reconstruction after mastectomy in breast cancer patients beneficial to shoulder function? ANZ J Surg. 2018;88(4):363–8.

    PubMed  Google Scholar 

  54. Levy EW, Pfalzer LA, Danoff J, Springer BA, McGarvey C, Shieh C, et al. Predictors of functional shoulder recovery at 1 and 12months after breast cancer surgery. Breast Cancer Res Treat. 2012;134(1):315–24.

    PubMed  Google Scholar 

  55. Bao T, Cai L, Giles JT, Gould J, Tarpinian K, Betts K, et al. A dual-center randomized controlled double blind trial assessing the effect of acupuncture in reducing musculoskeletal symptoms in breast cancer patients taking aromatase inhibitors. Breast Cancer Res Treat. 2013;138(1):167–74.

    CAS  PubMed  PubMed Central  Google Scholar 

  56. Ortiz A, Tirado M, Hughes DC, Gonzalez V, Song J, Mama SK, et al. Relationship between physical activity, disability, and physical fitness profile in sedentary Latina breast cancer survivors. Physiother Theory Pract. 2018;334(10):783–94. https://doi.org/10.1080/09593985.2018.1424978.

    Article  Google Scholar 

  57. Farzad M, MacDermid JC, Shafiee E, Beygi AS, Vafaei A, Varahra A, Beikpour H. Clinimetric testing of the persian version of the patient-rated tennis elbow evaluation (PRTEE) and the disabilities of the arm, shoulder, and hand (DASH) questionnaires in patients with lateral elbow tendinopathy. Disabil Rehabilit. 2020;1–6.

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Acknowledgements

Joy MacDermid was supported by a Canada Research Chair and the Dr James Roth Chair (both in Musculoskeletal Measurement and Knowledge Translation).

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Contributions

All of the research team contributed to the study conception and study design. FJ and MF: contributed to the literature search, data extraction, quality assessment, and linkage between the content of the outcome measurements and the ICF framework. MF and FJ: mutually performed the analyses. AV: prepared the first draft of the manuscript, and MF: commented on each subsequent versions of the manuscript and did the final revisions. JCM: guided methods and revised the manuscript for important intellectual content. All authors read and approved the final manuscript to be published.

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Correspondence to Maryam Farzad.

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Jamshidi, F., Farzad, M., MacDermid, J.C. et al. Assessing the content based on ICF and quality based on COSMIN criteria of patient-reported outcome measures of functioning in breast cancer survivors: a systematic review. Breast Cancer 29, 377–393 (2022). https://doi.org/10.1007/s12282-022-01340-6

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