Which symptoms and problems do advanced cancer patients admitted to specialized palliative care report in addition to those included in the EORTC QLQ-C15-PAL? A register-based national study
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Patients in palliative care are willing to answer short questionnaires, like the EORTC QLQ-C15-PAL; however, patients may suffer from other symptoms and problems (S/Ps) not covered by such questionnaires. Therefore, to identify which other S/Ps patients experience, in addition to those already included in the EORTC QLQ-C15-PAL, we developed a brief instrument to supplement this questionnaire named WISP (Write In three Symptoms/Problems), permitting patients to report 1–3 additional S/Ps and their severity. We aim to investigate the nature, prevalence, and severity of S/Ps reported on WISP.
A register-based study with data obtained from the Danish Palliative Care Database. This study included adults with advanced cancer admitted to specialized palliative care in Denmark, who reported S/Ps on WISP. S/Ps were categorized qualitatively, and their prevalence and severity were calculated.
Of the 5447 patients who completed the EORTC QLQ-C15-PAL, 1788 (32.8%) reported at least one symptom/problem using WISP. In total, 2796 S/Ps were reported; 24.8% were already covered by EORTC QLQ-C15-PAL; 63.6% were new, 10.1% were diagnoses and 1.6% could not be coded. S/Ps already covered and new were grouped into 61 categories. The most prevalent S/Ps reported were (in decreasing order) pain, edema, dizziness, impaired physical or emotional function, cough, and sweats. Overall, 85% of the S/Ps were rated as moderate to severe.
The WISP instrument strongly improves the recognition of S/Ps by combining standardization with individualization. We recommend its use for comprehensive symptom assessment alongside the EORTC QLQ-C15-PAL, and potentially also alongside the EORTC QLQ-C30.
KeywordsEORTC QLQ-C15-PAL Advanced cancer Palliative care Symptom assessment Prevalence
Compliance with ethical standards
Conflict of interest
The authors declared that they have no conflict of interest.
This study was based only on registers from the Danish Palliative Care Database requested through the Danish Clinical Registries - RKKP; therefore, it had not impact on any individual’s care and not required Scientific Ethics Committee approval according to Danish law. The study was conducted following the approval from the Danish Data Protection Agency (j.nr.: 2012-58-0004/local j.nr. BFH-2017-064 I-Suite no. 05590).
- 2.Moens K, Higginson IJ, Harding R, Brearley S, Caraceni A, Cohen J, Costantini M, Deliens L, Francke AL, Kaasa S, Linden K, Meeussen K, Miccinesi G, Onwuteaka-Philipsen B, Pardon K, Pasman R, Pautex S, Payne S, Van den Block L (2014) Are there differences in the prevalence of palliative care-related problems in people living with advanced cancer and eight non-cancer conditions? A systematic review. J Pain Symptom Manag 48(4):660–677. https://doi.org/10.1016/j.jpainsymman.2013.11.009 CrossRefGoogle Scholar
- 4.World Health Organization (2002) National cancer control programmes: policies and managerial guidelines.83–92Google Scholar
- 5.Osman H, Shrestha S, Temin S, Ali ZV, Corvera RA, Ddungu HD, Lima LD, Estevez-Diz MDP, Ferris FD, Gafer N, Gupta HK, Horton S, Jacob G, Jia R, Lu FL, Mosoiu D, Puchalski C, Seigel C, Soyannwo O, Cleary JF (2018) Palliative care in the global setting: ASCO resource-stratified practice guideline. J Glob Oncol 4(4):1–24. https://doi.org/10.1200/JGO.18.00026 Google Scholar
- 8.Robin Cohen S, Mount BM, Bruera E, Provost M, Rowe J, Tong K (1997) Validity of the McGill quality of life questionnaire in the palliative care setting: a multi-centre Canadian study demonstrating the importance of the existential domain. Palliat Med 11(1):3–20. https://doi.org/10.1177/026921639701100102 CrossRefGoogle Scholar
- 10.Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, Filiberti A, Flechtner H, Fleishman SB, Haes JCJM, Kaasa S, Klee M, Osoba D, Razavi D, Rofe PB, Schraub S, Sneeuw K, Sullivan M, Takeda F (1993) 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 85(5):365–376. https://doi.org/10.1093/jnci/85.5.365 CrossRefGoogle Scholar
- 14.Velikova G, Coens C, Efficace F, Greimel E, Groenvold M, Johnson C, Singer S, van de Poll-Franse L, Young T, Bottomley A (2012) Health-related quality of life in EORTC clinical trials — 30 years of progress from methodological developments to making a real impact on oncology practice. EJC Suppl 10(1):141–149. https://doi.org/10.1016/S1359-6349(12)70023-X CrossRefGoogle Scholar
- 15.Wintner LM, Sztankay M, Aaronson N, Bottomley A, Giesinger JM, Groenvold M, Petersen MA, van de Poll-Franse L, Velikova G, Verdonck-de Leeuw I (2016) The use of EORTC measures in daily clinical practice—a synopsis of a newly developed manual. Eur J Cancer 68:73–81. https://doi.org/10.1016/j.ejca.2016.08.024 CrossRefGoogle Scholar
- 16.Groenvold M, Petersen MA, Aaronson NK, Arraras JI, Blazeby JM, Bottomley A, Fayers PM, de Graeff A, Hammerlid E, Kaasa S, Sprangers MAG, Bjorner JB (2006) The development of the EORTC QLQ-C15-PAL: a shortened questionnaire for cancer patients in palliative care. Eur J Cancer 42(1):55–64. https://doi.org/10.1016/j.ejca.2005.06.022 CrossRefGoogle Scholar
- 17.Strömgren AS, Goldschmidt D, Groenvold M, Petersen MA, Jensen PT, Pedersen L, Hoermann L, Helleberg C, Sjogren P (2002) Self-assessment in cancer patients referred to palliative care: a study of feasibility and symptom epidemiology. Cancer 94(2):512–520. https://doi.org/10.1002/cncr.10222 CrossRefGoogle Scholar
- 19.Groenvold M, Lund L, Mikkelsen SS, Pedersen L, Petersen MA (2009) Which symptoms and problems do patients in palliative care report in addition to those included in the EORTC QLQ-C15-PAL? 11th congress of the European Association of Palliative Care, Vienna, Austria, 7–10 May 2009. [homepage on the Internet] https://www.eapcnet.eu/events/previous-eapc-events. Accessed 8 Dec 2018
- 21.Adsersen M, Hansen MB, Groenvold M (2017) Danish palliative care database. Annual report 2016.Copenhagen: DMCG-PAL. [homepage on the Internet] http://www.dmcgpal.dk/573/%C3%85rsrapport-fra-dansk-palliativ-database. Accessed 20 Nov 2018
- 22.The Danish Clinical Registries (RKKP). [homepage on the Internet] http://www.rkkp.dk/in-english/. Accessed 3 Jan 2019
- 23.Groenvold M, Klee MC, Sprangers MA, Aaronson NK (1997) Validation of the EORTC QLQ-C30 quality of life questionnaire through combined qualitative and quantitative assessment of patient-observer agreement. J Clin Epidemiol 50(4):441–450. https://doi.org/10.1016/S0895-4356(96)00428-3 CrossRefGoogle Scholar
- 24.Petersen MA, Groenvold M, Aaronson N, Blazeby J, Brandberg Y, de Graeff A, Fayers P, Hammerlid E, Sprangers M, Velikova G (2006) Item response theory was used to shorten EORTC QLQ-C30 scales for use in palliative care. J Clin Epidemiol 59(1):36–44. https://doi.org/10.1016/j.jclinepi.2005.04.010 CrossRefGoogle Scholar
- 25.Suárez-del-Real Y, Allende-Pérez S, Alférez-Mancera A, Rodríguez RB, Jiménez-Toxtle S, Mohar A, Oñate-Ocaña LF (2011) Validation of the Mexican–Spanish version of the EORTC QLQ-C15-PAL questionnaire for the evaluation of health-related quality of life in patients on palliative care. Psychooncology 20(8):889–896. https://doi.org/10.1002/pon.1801 CrossRefGoogle Scholar
- 26.Nunes NAH (2014) The quality of life of Brazilian patients in palliative care: validation of the European Organization for Research and Treatment of Cancer qQuality of Life Questionnaire Core 15 PAL (EORTC QLQ-C15-PAL). Support Care Cancer 22(6):1595–1600. https://doi.org/10.1007/s00520-014-2119-1 CrossRefGoogle Scholar
- 30.Caissie A, Culleton S, Nguyen J, Zhang L, Zeng L, Holden L, Dennis K, Chan E, Jon F, Tsao M, Danjoux C, Sahgal A, Barnes E, Koo K, Chow E (2012) EORTC QLQ-C15-PAL quality of life scores in patients with advanced cancer referred for palliative radiotherapy. Support Care Cancer 20(4):841–848. https://doi.org/10.1007/s00520-011-1160-6 CrossRefGoogle Scholar
- 36.Kluetz PG, Slagle A, Papadopoulos E, Johnson LL, Donoghue M, Kwitkowski VE, Chen W-H, Sridhara R, Farrell AT, Keegan P (2016) Focusing on core patient-reported outcomes in cancer clinical trials: symptomatic adverse events, physical function, and disease-related symptoms. Clin Cancer Res 22:1553–1558. https://doi.org/10.1158/1078-0432.CCR-15-2035 CrossRefGoogle Scholar
- 38.Strömgren AS, Groenvold M, Pedersen L, Olsen AK, Spile M, Sjøgren P (2001) Does the medical record cover the symptoms experienced by cancer patients receiving palliative care? A comparison of the record and patient self-rating. J Pain Symptom Manag 21(3):189–196. https://doi.org/10.1016/S0885-3924(01)00264-0 CrossRefGoogle Scholar