Quality of care and quality of life as experienced by patients with advanced cancer of a rare tumour type: results of the multicentre observational eQuiPe study

Ferlay J, Colombet M, Soerjomataram I, Dyba T, Randi G, Bettio M, et al. Cancer incidence and mortality patterns in Europe: estimates for 40 countries and 25 major cancers in 2018. Eur J Cancer. 2018;103:356–87. https://doi.org/10.1016/j.ejca.2018.07.005.

Article  CAS  Google Scholar 

Gatta G, Capocaccia R, Botta L, Mallone S, de Angelis R, Ardanaz E, et al. Burden and centralised treatment in Europe of rare tumours: results of RARECAREnet—a population-based study. Lancet Oncol. 2017;18(8):1022–39. https://doi.org/10.1016/S1470-2045(17)30445-X.

Article  Google Scholar 

Gatta G, van der Zwan JM, Casali PG, Siesling S, Dei Tos AP, Kunkler I, et al. Rare cancers are not so rare: the rare cancer burden in Europe. Eur J Canc. 2011;47(17):2493–511. https://doi.org/10.1016/j.ejca.2011.08.008.

Article  Google Scholar 

de Heus E, Duijts SFA, van der Zwan JM, Kapiteijn E, Nieveen van Dijkum EJM, van Herpen CML, et al. The gap between rare and common cancers still exists: results from a population-based study in the Netherlands. Eur J Canc. 2022;167:103–11. https://doi.org/10.1016/j.ejca.2022.03.001.

Article  CAS  Google Scholar 

Ray-Coquard I, Pujade Lauraine E, le Cesne A, Pautier P, Vacher Lavenue MC, Trama A, et al. Improving treatment results with reference centres for rare cancers: where do we stand? Eur J Canc. 2017;77:90–8. https://doi.org/10.1016/j.ejca.2017.02.006.

Article  Google Scholar 

DeSantis CE, Kramer JL, Jemal A. The burden of rare cancers in the United States. CA Cancer J Clin. 2017;67(4):261–72. https://doi.org/10.3322/caac.21400.

Article  Google Scholar 

Drabbe C, Grünhagen DJ, van Houdt WJ, Braam PM, Soomers VLMN, van der Hage JA, et al. Diagnosed with a rare cancer: experiences of adult sarcoma survivors with the healthcare system—results from the SURVSARC Study. Cancers. 2021;13(4):679. https://doi.org/10.3390/cancers13040679.

Article  Google Scholar 

Duijts SFA, van der Zwan JM. Rare cancers and cancer of unknown primary: here’s what you should know! Eur J Cancer Care. 2021;30(6):e13508. https://doi.org/10.1111/ecc.13508.

Article  Google Scholar 

Pillai RK, Jayasree K. Rare cancers: challenges & issues. Indian J Med Res. 2017;145(1):17. https://doi.org/10.4103/ijmr.IJMR_915_14.

Article  Google Scholar 

Loggers ET, Prigerson HG. The end-of-life experience of patients with rare cancers and their caregivers. Rare Tumors. 2014;6(1):5281. https://doi.org/10.4081/rt.2014.5281.

Article  Google Scholar 

Blaauwgeers H, Ho V, Kwast A, van der Zwan JM. Kankerzorg in beeld - Zeldzame kanker. Utrecht: IKNL; 2018.

Google Scholar 

Soomers VLMN, van der Graaf WTA, Zaidi S, Kaal SEJ, Hayes AJ, Schreuder BHWB, et al. The route to diagnosis of sarcoma patients: results from an interview study in the Netherlands and the United Kingdom. PLoS One. 2020;15(12): e0243439. https://doi.org/10.1371/journal.pone.0243439.

Article  CAS  Google Scholar 

Alessy SA, Alhajji M, Rawlinson J, Baker M, Davies EA. Factors influencing cancer patients’ experiences of care in the USA, United Kingdom, and Canada: a systematic review. eClinicalMedicine. 2022;47. https://doi.org/10.1016/j.eclinm.2022.101405.

Campbell SM, Roland MO, Buetow SA. Defining quality of care. Soc Sci Med. 2000;51(11):1611–25. https://doi.org/10.1016/S0277-9536(00)00057-5.

Article  CAS  Google Scholar 

de Vogel-Voogt E, van der Heide A, van Leeuwen AF, Visser AP, van der Rijt CCD, van der Maas PJ. Patient evaluation of end-of-life care. Palliat Med. 2007;21(3):243–8. https://doi.org/10.1177/0269216307077352.

Article  Google Scholar 

van Roij J, de Zeeuw B, Zijlstra M, Claessens N, Raijmakers N, van de Poll-Franse L, et al. Shared perspectives of patients with advanced cancer and their informal caregivers on essential aspects of health care: a qualitative study. J Palliat Care. 2021. https://doi.org/10.1177/0825859721989524

de Heus E, Engelen V, Dingemans I, Richel C, Schrieks M, van der Zwan JM, et al. Differences in health care experiences between rare cancer and common cancer patients: results from a national cross-sectional survey. Orphanet J Rare Dis. 2021;16(1):249. https://doi.org/10.21203/rs.3.rs-122659/v1.

Article  Google Scholar 

Feinberg Y, Law C, Singh S, Wright FC. Patient experiences of having a neuroendocrine tumour: a qualitative study. Eur J Oncol Nurs. 2013;17(5):541–5. https://doi.org/10.1016/j.ejon.2013.02.003.

Article  CAS  Google Scholar 

Griffiths J, Willard C, Burgess A, Amir Z, Luker K. Meeting the ongoing needs of survivors of rarer cancer. Eur J Oncol Nurs. 2007;11(5):434–41. https://doi.org/10.1016/j.ejon.2007.09.004.

Article  Google Scholar 

Haggerty JL, Reid RJ, Freeman GK, Starfield BH, Adair CE, McKendry R. Continuity of care: a multidisciplinary review. BMJ. 2003;327(7425):1219. https://doi.org/10.1136/bmj.327.7425.1219.

Article  Google Scholar 

Molster C, Urwin D, di Pietro L, Fookes M, Petrie D, van der Laan S, et al. Survey of healthcare experiences of Australian adults living with rare diseases. Orphanet J Rare Dis. 2016;11(1):1–12. https://doi.org/10.1186/s13023-016-0409-z.

Article  Google Scholar 

Hannon B, Swami N, Krzyzanowska MK, Leighl N, Rodin G, Le LW, et al. Satisfaction with oncology care among patients with advanced cancer and their caregivers. Qual Life Res. 2013;22(9):2341–9. https://doi.org/10.1007/s11136-013-0371-3.

Article  Google Scholar 

Engel M, Brinkman-Stoppelenburg A, Nieboer D, van der Heide A. Satisfaction with care of hospitalised patients with advanced cancer in the Netherlands. Eur J Cancer Care. 2018;27(5): e12874. https://doi.org/10.1111/ecc.12874.

Article  Google Scholar 

Bogart KR, Irvin VL. Health-related quality of life among adults with diverse rare disorders. Orphanet J Rare Dis. 2017;12(1):177. https://doi.org/10.1186/s13023-017-0730-1.

Article  Google Scholar 

Robinson KM, Christensen KB, Ottesen B, Krasnik A. Diagnostic delay, quality of life and patient satisfaction among women diagnosed with endometrial or ovarian cancer: a nationwide Danish study. Qual Life Res. 2012;21(9):1519–25. https://doi.org/10.1007/s11136-011-0077-3.

Article  Google Scholar 

Hasegawa T, Goto N, Matsumoto N, Sasaki Y, Ishiguro T, Kuzuya N, et al. Prevalence of unmet needs and correlated factors in advanced-stage cancer patients receiving rehabilitation. Supp Care Cancer. 2016;24(11):4761–7. https://doi.org/10.1007/s00520-016-3327-7.

Article  Google Scholar 

van Roij J, Brom L, Youssef-El Soud M, van de Poll-Franse L, Raijmakers NJH. Social consequences of advanced cancer in patients and their informal caregivers: a qualitative study. Support Care Cancer. 2019;27(4):1187. https://doi.org/10.1007/s00520-018-4437-1.

Article  Google Scholar 

Siemens W, Schönsteiner SS, Orellana-Rios CL, Schaekel U, Kessler J, Eschbach C, et al. Severe symptoms and very low quality-of-life among outpatients newly diagnosed with advanced cancer: data from a multicenter cohort study. Support Care Cancer. 2020;28(11):5547–55. https://doi.org/10.1007/s00520-020-05388-y.

Article  Google Scholar 

van Roij J, Raijmakers N, Ham L, van den Beuken-van EM, van den Borne B, Creemers GJ, et al. Quality of life and quality of care as experienced by patients with advanced cancer and their relatives: a multicentre observational cohort study (eQuiPe). Eur J Cancer. 2022;165:125–35. https://doi.org/10.1016/j.ejca.2022.01.039.

Article  Google Scholar 

RARECARENet. Cancer List. Available from: https://www.rarecarenet.eu/rarecarenet/index.php/cancerlist. Accessed 15 March 2022

van Roij J, Zijlstra M, Ham L, Brom L, Fransen H, Vreugdenhil A, et al. Prospective cohort study of patients with advanced cancer and their relatives on the experienced quality of care and life (eQuiPe study): a study protocol. BMC Palliat Care. 2020;19(1):1–9. https://doi.org/10.1186/s12904-020-00642-w.

Article  Google Scholar 

Claessen SJJ, Francke AL, Sixma HJ, de Veer AJE, Deliens L. Measuring patients’ experiences with palliative care: the Consumer Quality Index Palliative Care. BMJ Support Palliat Care. 2012;2(4):367–72. https://doi.org/10.1136/bmjspcare-2011-000055.

Article  Google Scholar 

Brédart 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(14):2120–31. https://doi.org/10.1016/j.ejca.2005.04.041.

Article  Google Scholar 

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. https://doi.org/10.1093/jnci/85.5.365.

Article  CAS  Google Scholar 

Fayers PM, Aaronson NK, Bjordal K, Groenvold M, Curran D, Bottomley A, et al. The EORTC QLQ-C30 scoring manual. 3rd ed. Brussels: European Organisation for Research and Treatment of Cancer; 2001.

Google Scholar 

Giesinger JM, Kieffer JM, Fayers PM, Groenvold M, Petersen MA, Scott NW, et al. Replication and validation of higher order models demonstrated that a summary score for the EORTC QLQ-C30 is robust. J Clin Epidemiol. 2016;69:79–88. https://doi.org/10.1016/j.jclinepi.2015.08.007.

Article  Google Scholar 

Efficace F, Cottone F, Sommer K, Kieffer J, Aaronson N, Fayers P, et al. Validation of the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 summary score in patients with hematologic malignancies. Value Health. 2019;22(11):1303–10. https://doi.org/10.1016/j.jval.2019.06.004.

Article  Google Scholar 

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. https://doi.org/10.1200/JCO.1993.11.3.570.

Article  CAS  Google Scholar 

Luckett T, King MT, Butow PN, Oguchi M, Rankin N, Price MA, et al. Choosing between the EORTC QLQ-C30 and FACT-G for measuring health-related quality of life in cancer clinical research: issues, evidence and recommendations. Ann Oncol. 2011;22(10):2179–90. https://doi.org/10.1093/annonc/mdq721.

Article  CAS  Google Scholar 

OECD, Eurostat, UNESCO Institute for Statistics. ISCED. Operational Manual: Guidelines for Classifying National Education Programmes and Related Qualifications. Paris: OECD Publishing; 2011. p. 2015.

Google Scholar 

Newton JC, O’Connor M, Saunders C, Ali S, Nowak AK, Halkett GKB. “Who can I ring? Where can I go?” Living with advanced cancer whilst navigating the health system: a qualitative study. Support Care Cancer. 2022;30(8):6817–26. https://doi.org/10.1007/s00520-022-07107-1.

Article  Google Scholar 

Oosterveld-Vlug MG, Custers B, Hofstede J, Donker GA, Rijken PM, Korevaar JC, et al. What are essential elements of high-quality palliative care at home? An interview study among patients and relatives faced with advanced cancer. BMC Palliat Care. 2019;18(1):1–10. https://doi.org/10.1186/s12904-019-0485-7.

Article  Google Scholar 

Lewis RA, Neal RD, Hendry M, France B, Williams NH, Russell D, et al. Patients’ and healthcare professionals’ views of cancer follow-up: systematic review. Br J Gen Pract. 2009;59(564):533–40. https://doi.org/10.3399/bjgp09X453576.

Article  Google Scholar 

Haggerty JL, Roberge D, Freeman GK, Beaulieu C. Experienced continuity of care when patients see multiple clinicians: a qualitative metasummary. Ann Fam Med. 2013;11(3):262–71. https://doi.org/10.1370/afm.1499.

Article  Google Scholar 

Jackson J, MacKean G, Cooke T, Lahtinen M. Patient and provider experiences with relationship, information, and management continuity. Patient Exp J. 2017;4(3):38–47. https://doi.org/10.35680/2372-0247.1192.

Article  Google Scholar 

NFK. Sociale steun, begrip en nazorg bij kanker: wat is jouw ervaring? 2021. [Internet].

Rodríguez AM, Mayo NE, Gagnon B. Independent contributors to overall quality of life in people with advanced cancer. Br J Cancer. 2013;108(9):1790–800. https://doi.org/10.1038/bjc.2013.146.

Article  Google Scholar 

Scott NW, Fayers PM, Aaronson NK, Bottomly A, de Graeff A, Groenvold M, et al. EORTC QLQ-C30 Reference Values. Brussels; 2008.

Raijmakers NJH, Zijlstra M, van Roij J, Husson O, Oerlemans S, van de Poll-Franse LV. Health-related quality of life among cancer patients in their last year of life: results from the PROFILES registry. Support Care Cancer. 2018;26(10):3397–404. https://doi.org/10.1007/s00520-018-4181-6.

留言 (0)

沒有登入
gif