Helping Patients Communicate With Oncologists When Cancer Treatment Resistance Occurs to Develop, Test, and Implement a Patient Communication Aid: Sequential Collaborative Mixed Methods Study

Anne Brédart, Aude Rault, Johanna Terrasson, Etienne Seigneur, Leanne De Koning, Elisabeth Hess, Alexia Savignoni, Paul Cottu, Jean-Yves Pierga, Sophie Piperno-Neumann, Manuel Rodrigues, Carole Bouleuc, Sylvie Dolbeault, Anne Brédart, Aude Rault, Johanna Terrasson, Etienne Seigneur, Leanne De Koning, Elisabeth Hess, Alexia Savignoni, Paul Cottu, Jean-Yves Pierga, Sophie Piperno-Neumann, Manuel Rodrigues, Carole Bouleuc, Sylvie Dolbeault

Abstract

Background: Most cancer-related deaths result from disseminated diseases that develop resistance to anticancer treatments. Inappropriate communication in this challenging situation may result in unmet patient information and support needs. Patient communication aids such as question prompt lists (QPLs) may help.

Objective: This study aims to develop and pilot-test a specific QPL in the following two contrasting clinical contexts in France after cancer resistance has developed: triple-negative and luminal B metastatic breast cancer (MBC) and metastatic uveal melanoma (MUM).

Methods: A sequential study design with a mixed methods collaborative approach will be applied. The first step aims to build a specific QPL. Step 1a will explore oncologist-patient communication issues from oncology professionals' interviews (n=20 approximately). Step 1b will appraise information and support needs experienced by patients with MBC or MUM both quantitatively (n=80) and qualitatively (n=40 approximately). These data will be used to develop and pilot-test a QPL specific to patients with cancer experiencing initial or acquired resistance to treatment. We expect to obtain a core QPL that comprises questions and concerns commonly expressed by patients with resistant cancer and is complemented by specific issues for either MBC or MUM cancer sites. In step 1c, 2 focus groups of patients with any type of metastatic cancer (n=4) and health care professionals (n=4) will be conducted to revise the content of a preliminary QPL and elaborate an acceptable and feasible clinical implementation. In step 1d, the content of the QPL version 1 and implementation guidance will be validated using a Delphi process. Step 2 will pilot-test the QPL version 1 in real practice with patients with MBC or MUM (n=80). Clinical utility will be assessed by comparing responses to questionnaires administered in step 1b (QPL-naive historical control group) and step 2 (QPL intervention group).

Results: This study received grants in March and December 2019 and was approved by the French national ethics committee in July 2019. As of October 2021, interviews with oncology professionals have been conducted and analyzed (N=26 to reach saturation), and 39 and 27 patients with MBC and MUM, respectively, have been recruited.

Conclusions: A clinically and culturally tailored QPL is expected to facilitate patients' participation in consultations, improve oncologists' responses to patients' information and support needs, and thus foster patients' psychological adjustment to the diagnosis and follow-up of cancer resistance to treatment.

Trial registration: ClinicalTrials.gov NCT04118062; https://ichgcp.net/clinical-trials-registry/NCT04118062.

International registered report identifier (irrid): DERR1-10.2196/26414.

Keywords: cancer resistance; collaborative research; mixed methods; patient participation; physician-patient communication; question prompt list.

Conflict of interest statement

Conflicts of Interest: None declared.

©Anne Brédart, Aude Rault, Johanna Terrasson, Etienne Seigneur, Leanne De Koning, Elisabeth Hess, Alexia Savignoni, Paul Cottu, Jean-Yves Pierga, Sophie Piperno-Neumann, Manuel Rodrigues, Carole Bouleuc, Sylvie Dolbeault. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 12.01.2022.

Figures

Figure 1
Figure 1
Sequential study design. MBC: metastatic breast cancer; MUM: metastatic uveal melanoma; QPL: question prompt list.

References

    1. Nikolaou M, Pavlopoulou A, Georgakilas AG, Kyrodimos E. The challenge of drug resistance in cancer treatment: a current overview. Clin Exp Metastasis. 2018 Apr;35(4):309–18. doi: 10.1007/s10585-018-9903-0.10.1007/s10585-018-9903-0
    1. Selim S, Kunkel E, Wegier P, Tanuseputro P, Downar J, Isenberg SR, Li A, Kyeremanteng K, Manuel D, Kobewka DM. A systematic review of interventions aiming to improve communication of prognosis to adult patients. Patient Educ Couns. 2020 Aug;103(8):1467–97. doi: 10.1016/j.pec.2020.02.029.S0738-3991(20)30100-2
    1. Elwyn G, Stiel M, Durand M, Boivin J. The design of patient decision support interventions: addressing the theory-practice gap. J Eval Clin Pract. 2011 Aug;17(4):565–74. doi: 10.1111/j.1365-2753.2010.01517.x.JEP1517
    1. Vasista A, Stockler MR, Martin A, Lawrence NJ, Kiely BE. Communicating prognostic information: what do oncologists think patients with incurable cancer should be told? Intern Med J. 2020 Dec;50(12):1492–9. doi: 10.1111/imj.14739.
    1. Harding R, Simms V, Calanzani N, Higginson IJ, Hall S, Gysels M, Meñaca A, Bausewein C, Deliens L, Ferreira P, Toscani F, Daveson BA, Ceulemans L, Gomes B, PRISMA If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis. Psychooncology. 2013 Oct;22(10):2298–305. doi: 10.1002/pon.3283.
    1. Butow PN, Clayton JM, Epstein RM. Prognostic awareness in adult oncology and palliative care. J Clin Oncol. 2020 Mar 20;38(9):877–84. doi: 10.1200/jco.18.02112.
    1. Hagerty RG, Butow PN, Ellis PM, Lobb EA, Pendlebury SC, Leighl N, MacLeod C, Mac Leod C, Tattersall MH. Communicating with realism and hope: incurable cancer patients' views on the disclosure of prognosis. J Clin Oncol. 2005 Feb 20;23(6):1278–88. doi: 10.1200/JCO.2005.11.138.23/6/1278
    1. Johnson M, Tod AM, Brummell S, Collins K. Prognostic communication in cancer: a critical interpretive synthesis of the literature. Eur J Oncol Nurs. 2015 Oct;19(5):554–67. doi: 10.1016/j.ejon.2015.03.001.S1462-3889(15)00044-7
    1. Henselmans I, Smets E, Han P, de Haes H, Laarhoven H. How long do I have? Observational study on communication about life expectancy with advanced cancer patients. Patient Educ Couns. 2017 Oct;100(10):1820–7. doi: 10.1016/j.pec.2017.05.012.S0738-3991(17)30284-7
    1. Elkin EB, Kim SH, Casper ES, Kissane DW, Schrag D. Desire for information and involvement in treatment decisions: elderly cancer patients' preferences and their physicians' perceptions. J Clin Oncol. 2007 Nov 20;25(33):5275–80. doi: 10.1200/JCO.2007.11.1922.25/33/5275
    1. Jenkins V, Solis-Trapala I, Langridge C, Catt S, Talbot DC, Fallowfield LJ. What oncologists believe they said and what patients believe they heard: an analysis of phase I trial discussions. J Clin Oncol. 2011 Jan 01;29(1):61–8. doi: 10.1200/JCO.2010.30.0814.JCO.2010.30.0814
    1. Weeks JC, Catalano PJ, Cronin A, Finkelman MD, Mack JW, Keating NL, Schrag D. Patients' expectations about effects of chemotherapy for advanced cancer. N Engl J Med. 2012 Oct 25;367(17):1616–25. doi: 10.1056/NEJMoa1204410.
    1. Street RJ, Gordon H, Ward M, Krupat E, Kravitz RL. Patient participation in medical consultations: why some patients are more involved than others. Med Care. 2005 Oct;43(10):960–9. doi: 10.1097/01.mlr.0000178172.40344.70.00005650-200510000-00003
    1. Clayton JM, Natalia C, Butow PN, Simpson JM, O'Brien AM, Devine R, Tattersall MH. Physician endorsement alone may not enhance question-asking by advanced cancer patients during consultations about palliative care. Support Care Cancer. 2012 Jul 26;20(7):1457–64. doi: 10.1007/s00520-011-1229-2.
    1. Dang BN, Westbrook RA, Njue SM, Giordano TP. Building trust and rapport early in the new doctor-patient relationship: a longitudinal qualitative study. BMC Med Educ. 2017 Feb 02;17(1):32. doi: 10.1186/s12909-017-0868-5. 10.1186/s12909-017-0868-5
    1. Beach WA, Dozier DM. Fears, uncertainties, and hopes: patient-initiated actions and doctors' responses during oncology interviews. J Health Commun. 2015;20(11):1243–54. doi: 10.1080/10810730.2015.1018644.
    1. Niranjan SJ, Turkman Y, Williams BR, Williams CP, Halilova KI, Smith T, Knight SJ, Bhatia S, Rocque GB. “I'd want to know, because a year's not a long time to prepare for a death”: role of prognostic information in shared decision making among women with metastatic breast cancer. J Palliative Med. 2020 Jul 01;23(7):937–43. doi: 10.1089/jpm.2019.0457.
    1. Henselmans I, Brugel SD, de Haes HC, Wolvetang KJ, de Vries LM, Pieterse AH, Baas-Thijssen MC, de Vos FY, van Laarhoven HW, Smets EM. Promoting shared decision making in advanced cancer: development and piloting of a patient communication aid. Patient Educ Couns. 2019 May;102(5):916–23. doi: 10.1016/j.pec.2018.12.018.S0738-3991(18)30412-9
    1. Leonhardt M, Aschenbrenner K, Kreis ME, Lauscher JC. Does migrant background predict to what extent colorectal cancer patients want to be informed about their life expectancy? - a cross-sectional analysis. Int J Equity Health. 2019 Dec 05;18(1):192. doi: 10.1186/s12939-019-1105-0. 10.1186/s12939-019-1105-0
    1. Douglas SL, Daly BJ, Meropol NJ, Lipson AR. Patient-physician discordance in goals of care for patients with advanced cancer. Curr Oncol. 2019 Dec;26(6):370–9. doi: 10.3747/co.26.5431. conc-26-370
    1. Bernacki RE, Block SD, American College of Physicians High Value Care Task Force Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med. 2014 Dec;174(12):1994–2003. doi: 10.1001/jamainternmed.2014.5271.1916912
    1. El-Jawahri A, Forst D, Fenech A, Brenner KO, Jankowski AL, Waldman L, Sereno I, Nipp R, Greer JA, Traeger L, Jackson V, Temel J. Relationship between perceptions of treatment goals and psychological distress in patients with advanced cancer. J Natl Compr Canc Netw. 2020 Jul;18(7):849–55. doi: 10.6004/jnccn.2019.7525.jnccn19231
    1. Levinson W. Patient-centred communication: a sophisticated procedure. BMJ Qual Saf. 2011 Oct;20(10):823–5. doi: 10.1136/bmjqs-2011-000323.bmjqs-2011-000323
    1. Girgis A, Sanson-Fisher RW. Breaking bad news: consensus guidelines for medical practitioners. J Clin Oncol. 1995 Sep;13(9):2449–56. doi: 10.1200/JCO.1995.13.9.2449.
    1. Clayton JM, Hancock KM, Butow PN, Tattersall MH, Currow DC, Australiannew Zealand Expert Advisory Group. Adler J, Aranda S, Auret K, Boyle F, Britton A, Chye R, Clark K, Davidson P, Davis JM, das A, Graham S, Hardy J, Introna K, Kearsley J, Kerridge I, Kristjanson L, Martin P, McBride A, Meller A, Mitchell G, Moore A, Noble B, Olver I, Parker S, Peters M, Saul P, Stewart C, Swinburne L, Tobin B, Tuckwell K, Yates P, Australasian Society of HIV Medicine. AustralianNew Zealand Society of Palliative Medicine. Australasian Chapter of Palliative Medicine. Royal Australasian College of Physicians. Australian College of RuralRemote Medicine. Australian General Practice Network. Australian Society of Geriatric Medicine. Cancer Voices Australia. Cardiac Society of AustraliaNew Zealand. Clinical Oncological Soceity of Australia. Motor Neurone Disease Association of Australia. Palliative Care Australia. Palliative Care Nurses Australia. Royal Australian College of General Practitioners. Royal College of Nursing‚ Australia. Thoracic Society of AustraliaNew Zealand Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers. Med J Aust. 2007 Jun 18;186(S12):77–105. doi: 10.5694/j.1326-5377.2007.tb01100.x.cla11246_fm
    1. Gilligan T, Coyle N, Frankel RM, Berry DL, Bohlke K, Epstein RM, Finlay E, Jackson VA, Lathan CS, Loprinzi CL, Nguyen LH, Seigel C, Baile WF. Patient-clinician communication: American Society of Clinical Oncology Consensus Guideline. J Clin Oncol. 2017 Nov 01;35(31):3618–32. doi: 10.1200/JCO.2017.75.2311.
    1. Libert Y, Peternelj L, Bragard I, Liénard A, Merckaert I, Reynaert C, Razavi D. Communication about uncertainty and hope: a randomized controlled trial assessing the efficacy of a communication skills training program for physicians caring for cancer patients. BMC Cancer. 2017 Jul 10;17(1):476. doi: 10.1186/s12885-017-3437-8. 10.1186/s12885-017-3437-8
    1. Stiefel F, Kiss A, Salmon P, Peters S, Razavi D, Cervantes A, Margulies A, Bourquin C, participants Training in communication of oncology clinicians: a position paper based on the third consensus meeting among European experts in 2018. Ann Oncol. 2018 Oct 01;29(10):2033–6. doi: 10.1093/annonc/mdy343. S0923-7534(19)34215-2
    1. Clayton JM, Hancock K, Parker S, Butow PN, Walder S, Carrick S, Currow D, Ghersi D, Glare P, Hagerty R, Olver IN, Tattersall MH. Sustaining hope when communicating with terminally ill patients and their families: a systematic review. Psychooncology. 2008 Jul;17(7):641–59. doi: 10.1002/pon.1288.
    1. Walczak A, Butow PN, Davidson PM, Bellemore FA, Tattersall MH, Clayton JM, Young J, Mazer B, Ladwig S, Epstein RM. Patient perspectives regarding communication about prognosis and end-of-life issues: how can it be optimised? Patient Educ Couns. 2013 Mar;90(3):307–14. doi: 10.1016/j.pec.2011.08.009.S0738-3991(11)00458-7
    1. Parker PA, Davison BJ, Tishelman C, Brundage MD, SCRN Communication Team What do we know about facilitating patient communication in the cancer care setting? Psychooncology. 2005 Oct;14(10):848–59. doi: 10.1002/pon.946.
    1. Haywood K, Marshall S, Fitzpatrick R. Patient participation in the consultation process: a structured review of intervention strategies. Patient Educ Couns. 2006 Oct;63(1-2):12–23. doi: 10.1016/j.pec.2005.10.005.S0738-3991(05)00314-9
    1. Cegala DJ, Chisolm DJ, Nwomeh BC. A communication skills intervention for parents of pediatric surgery patients. Patient Educ Couns. 2013 Oct;93(1):34–9. doi: 10.1016/j.pec.2013.03.015.S0738-3991(13)00124-9
    1. Street RL, Slee C, Kalauokalani DK, Dean DE, Tancredi DJ, Kravitz RL. Improving physician-patient communication about cancer pain with a tailored education-coaching intervention. Patient Educ Couns. 2010 Jul;80(1):42–7. doi: 10.1016/j.pec.2009.10.009. S0738-3991(09)00499-6
    1. Henselmans I, de Haes HC, Smets EM. Enhancing patient participation in oncology consultations: a best evidence synthesis of patient-targeted interventions. Psychooncology. 2013 May 14;22(5):961–77. doi: 10.1002/pon.3099.
    1. Epstein RM, Duberstein PR, Fenton JJ, Fiscella K, Hoerger M, Tancredi DJ, Xing G, Gramling R, Mohile S, Franks P, Kaesberg P, Plumb S, Cipri CS, Street RL, Shields CG, Back AL, Butow P, Walczak A, Tattersall M, Venuti A, Sullivan P, Robinson M, Hoh B, Lewis L, Kravitz RL. Effect of a patient-centered communication intervention on oncologist-patient communication, quality of life, and health care utilization in advanced cancer: the VOICE randomized clinical trial. JAMA Oncol. 2017 Jan 01;3(1):92–100. doi: 10.1001/jamaoncol.2016.4373. 2551984
    1. Walczak A, Mazer B, Butow PN, Tattersall MH, Clayton JM, Davidson PM, Young J, Ladwig S, Epstein RM. A question prompt list for patients with advanced cancer in the final year of life: development and cross-cultural evaluation. Palliat Med. 2013 Sep;27(8):779–88. doi: 10.1177/0269216313483659.0269216313483659
    1. Brandes K, Linn AJ, Butow PN, van Weert JC. The characteristics and effectiveness of Question Prompt List interventions in oncology: a systematic review of the literature. Psychooncology. 2015 Mar;24(3):245–52. doi: 10.1002/pon.3637.
    1. Butow P, Dunn S, Tattersall M, Jones Q. Patient participation in the cancer consultation: evaluation of a question prompt sheet. Ann Oncol. 1994 Mar;5(3):199–204. doi: 10.1093/oxfordjournals.annonc.a058793. S0923-7534(19)63009-7
    1. Brown RF, Bylund CL, Li Y, Edgerson S, Butow P. Testing the utility of a cancer clinical trial specific Question Prompt List (QPL-CT) during oncology consultations. Patient Educ Couns. 2012 Aug;88(2):311–7. doi: 10.1016/j.pec.2012.02.009. S0738-3991(12)00082-1
    1. Clayton J, Butow P, Tattersall M, Chye R, Noel M, Davis JM, Glare P. Asking questions can help: development and preliminary evaluation of a question prompt list for palliative care patients. Br J Cancer. 2003 Dec 01;89(11):2069–77. doi: 10.1038/sj.bjc.6601380. 6601380
    1. Keinki C, Momberg A, Clauß K, Bozkurt G, Hertel E, Freuding M, Josfeld L, Huebner J. Effect of question prompt lists for cancer patients on communication and mental health outcomes-A systematic review. Patient Educ Couns. 2021 Jun;104(6):1335–46. doi: 10.1016/j.pec.2021.01.012.S0738-3991(21)00039-2
    1. Zetzl T, Mann D, Gruner S, Schuler M, Jentschke E, Neuderth S, Roch C, van Oorschot B. Question prompts to empower cancer patients: results of a randomized controlled trial. Support Care Cancer. 2020 Jun 10;28(6):2571–9. doi: 10.1007/s00520-019-05036-0.10.1007/s00520-019-05036-0
    1. Glynne-Jones R, Ostler P, Lumley-Graybow S, Chait I, Hughes R, Grainger J, Leverton T. Can I look at my list? An evaluation of a 'prompt sheet' within an oncology outpatient clinic. Clin Oncol (R Coll Radiol) 2006 Jun;18(5):395–400. doi: 10.1016/j.clon.2006.01.005.S0936-6555(06)00021-5
    1. Walczak A, Butow PN, Bu S, Clayton JM. A systematic review of evidence for end-of-life communication interventions: who do they target, how are they structured and do they work? Patient Educ Couns. 2016 Jan;99(1):3–16. doi: 10.1016/j.pec.2015.08.017.S0738-3991(15)30054-9
    1. Miller N, Rogers S. A review of question prompt lists used in the oncology setting with comparison to the Patient Concerns Inventory. Eur J Cancer Care (Engl) 2018 Jan;27(1):e12489. doi: 10.1111/ecc.12489.
    1. Berger Z, Tung M, Yesantharao P, Zhou A, Blackford A, Smith TJ, Snyder C. Feasibility and perception of a question prompt list in outpatient cancer care. J Patient Rep Outcomes. 2019 Aug 15;3(1):53. doi: 10.1186/s41687-019-0145-y. doi: 10.1186/s41687-019-0145-y.10.1186/s41687-019-0145-y
    1. Licqurish SM, Cook OY, Pattuwage LP, Saunders C, Jefford M, Koczwara B, Johnson CE, Emery JD. Tools to facilitate communication during physician-patient consultations in cancer care: an overview of systematic reviews. CA Cancer J Clin. 2019 Nov;69(6):497–520. doi: 10.3322/caac.21573. doi: 10.3322/caac.21573.
    1. Dimoska A, Butow PN, Dent E, Arnold B, Brown RF, Tattersall MH. An examination of the initial cancer consultation of medical and radiation oncologists using the Cancode interaction analysis system. Br J Cancer. 2008 May 06;98(9):1508–14. doi: 10.1038/sj.bjc.6604348. 6604348
    1. Yeh JC, Cheng MJ, Chung CH, Smith TJ. Using a question prompt list as a communication aid in advanced cancer care. J Oncol Pract. 2014 May;10(3):137–41. doi: 10.1200/JOP.2013.001295. JOP.2013.001295
    1. Arthur J, Yennurajalingam S, Williams J, Tanco K, Liu D, Stephen S, Bruera E. Development of a question prompt sheet for cancer patients receiving outpatient palliative care. J Palliat Med. 2016 Aug;19(8):883–7. doi: 10.1089/jpm.2015.0545.
    1. Bouleuc C, Savignoni A, Chevrier M, Renault-Tessier E, Burnod A, Chvetzoff G, Poulain P, Copel L, Cottu P, Pierga J, Brédart A, Dolbeault S. A question prompt list for advanced cancer patients promoting advance care planning: a French randomized trial. J Pain Symptom Manage. 2021 Feb;61(2):331–41. doi: 10.1016/j.jpainsymman.2020.07.026. S0885-3924(20)30637-0
    1. Caminiti C, Diodati F, Filiberti S, Marcomini B, Annunziata MA, Ollari M, Passalacqua R. Cross-cultural adaptation and patients' judgments of a question prompt list for Italian-speaking cancer patients. BMC Health Serv Res. 2010 Jan 15;10:16. doi: 10.1186/1472-6963-10-16. 1472-6963-10-16
    1. Smets E, van Heijl M, van Wijngaarden AK, Henselmans I, van Berge Henegouwen MI. Addressing patients' information needs: a first evaluation of a question prompt sheet in the pretreatment consultation for patients with esophageal cancer. Dis Esophagus. 2012 Aug;25(6):512–9. doi: 10.1111/j.1442-2050.2011.01274.x.
    1. Jacobs M, Henselmans I, Arts DL, Ten Koppel M, Gisbertz SS, Lagarde SM, van Berge Henegouwen MI, Sprangers MA, de Haes HC, Smets EM. Development and feasibility of a web-based question prompt sheet to support information provision of health-related quality of life topics after oesophageal cancer surgery. Eur J Cancer Care (Engl) 2018 Jan;27(1):12593. doi: 10.1111/ecc.12593.
    1. Mancini J, Butow PN, Julian-Reynier C, Dring R, Festy P, Fenaux P, Vey N. Question prompt list responds to information needs of myelodysplastic syndromes patients and caregivers. Leuk Res. 2015 Jun;39(6):599–605. doi: 10.1016/j.leukres.2015.03.011.S0145-2126(15)00081-8
    1. Brown RF, Shuk E, Leighl N, Butow P, Ostroff J, Edgerson S, Tattersall M. Enhancing decision making about participation in cancer clinical trials: development of a question prompt list. Support Care Cancer. 2011 Aug;19(8):1227–38. doi: 10.1007/s00520-010-0942-6.
    1. van Weert JC, Jansen J, Spreeuwenberg PM, van Dulmen S, Bensing JM. Effects of communication skills training and a Question Prompt Sheet to improve communication with older cancer patients: a randomized controlled trial. Crit Rev Oncol Hematol. 2011 Oct;80(1):145–59. doi: 10.1016/j.critrevonc.2010.10.010.S1040-8428(10)00246-5
    1. Amundsen A, Ervik B, Butow P, Tattersall MH, Bergvik S, Sørlie T, Nordøy T. Adapting an Australian question prompt list in oncology to a Norwegian setting-a combined method approach. Support Care Cancer. 2017 Jan;25(1):51–8. doi: 10.1007/s00520-016-3380-2.10.1007/s00520-016-3380-2
    1. Arraras JI, Greimel E, Sezer O, Chie W, Bergenmar M, Costantini A, Young T, Vlasic KK, Velikova G. An international validation study of the EORTC QLQ-INFO25 questionnaire: an instrument to assess the information given to cancer patients. Eur J Cancer. 2010 Oct;46(15):2726–38. doi: 10.1016/j.ejca.2010.06.118.S0959-8049(10)00634-9
    1. El-Jawahri A, Traeger L, Park ER, Greer JA, Pirl WF, Lennes IT, Jackson VA, Gallagher ER, Temel JS. Associations among prognostic understanding, quality of life, and mood in patients with advanced cancer. Cancer. 2014 Jan 15;120(2):278–85. doi: 10.1002/cncr.28369. doi: 10.1002/cncr.28369.
    1. Wang T, Molassiotis A, Chung BP, Tan J. Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review. BMC Palliat Care. 2018 Jul 23;17(1):96. doi: 10.1186/s12904-018-0346-9. 10.1186/s12904-018-0346-9
    1. Teo I, Krishnan A, Lee GL. Psychosocial interventions for advanced cancer patients: a systematic review. Psychooncology. 2019 Jul;28(7):1394–407. doi: 10.1002/pon.5103.
    1. Brédart A, Kop J, Efficace F, Beaudeau A, Brito T, Dolbeault S, Aaronson N, EORTC Quality of Life Group Quality of care in the oncology outpatient setting from patients' perspective: a systematic review of questionnaires' content and psychometric performance. Psychooncology. 2015 Apr;24(4):382–94. doi: 10.1002/pon.3661.
    1. Arraras JI, Wintner LM, Sztankay M, Tomaszewski KA, Hofmeister D, Costantini A, Bredart A, Young T, Kuljanic K, Tomaszewska IM, Kontogianni M, Chie W, Kulis D, Greimel E, Conducted on behalf of the EORTC Quality of Life Group EORTC QLQ-COMU26: a questionnaire for the assessment of communication between patients and professionals. Phase III of the module development in ten countries. Support Care Cancer. 2017 May;25(5):1485–94. doi: 10.1007/s00520-016-3536-0.10.1007/s00520-016-3536-0
    1. Fouquet C, Brédart A, Bouleuc C. [French adaptation of a question prompt list for cancer patients and their carers in supportive and palliative care] Bull Cancer. 2012 Jun;99(6):693–701. doi: 10.1684/bdc.2012.1593. S0007-4551(15)30436-7
    1. Poortmans P. De-escalating and escalating radiation therapy in the management of early breast cancer. Breast. 2017 Mar;32(Supplement 1):2–3. doi: 10.1016/s0960-9776(17)30058-9.
    1. Gonzalez-Angulo A, Morales-Vasquez F, Hortobagyi G. Overview of resistance to systemic therapy in patients with breast cancer. Adv Exp Med Biol. 2007;608:1–22. doi: 10.1007/978-0-387-74039-3_1.
    1. Deluche E, Antoine A, Bachelot T, Robain M, Perol D, Delaloge S. A response letter to comments on "Contemporary outcomes of metastatic breast cancer among 22,000 women from the multicentre ESME cohort 2008-2016". Eur J Cancer. 2020 Nov;140:165–6. doi: 10.1016/j.ejca.2020.09.005.S0959-8049(20)30490-1
    1. Cardoso F, Paluch-Shimon S, Senkus E, Curigliano G, Aapro M, André F, Barrios C, Bergh J, Bhattacharyya G, Biganzoli L, Boyle F, Cardoso M, Carey L, Cortés J, El Saghir N, Elzayat M, Eniu A, Fallowfield L, Francis P, Gelmon K, Gligorov J, Haidinger R, Harbeck N, Hu X, Kaufman B, Kaur R, Kiely B, Kim S, Lin N, Mertz S, Neciosup S, Offersen B, Ohno S, Pagani O, Prat A, Penault-Llorca F, Rugo H, Sledge G, Thomssen C, Vorobiof D, Wiseman T, Xu B, Norton L, Costa A, Winer E. 5th ESO-ESMO international consensus guidelines for advanced breast cancer (ABC 5) Ann Oncol. 2020 Dec;31(12):1623–49. doi: 10.1016/j.annonc.2020.09.010. S0923-7534(20)42460-3
    1. Mathis T, Cassoux N, Tardy M, Piperno S, Gastaud L, Dendale R, Maschi C, Nguyen A, Meyer L, Bonnin N, Baillif S, Tick S, Mouriaux F, Jaspart F, Dellis J, Rosier L, Desjardins L, Herault J, Caujolle JP, Thariat J. [Management of uveal melanomas, guidelines for oncologists] Bull Cancer. 2018 Oct;105(10):967–80. doi: 10.1016/j.bulcan.2018.07.011.S0007-4551(18)30232-7
    1. Tuomaala S, Kivelä T. Metastatic pattern and survival in disseminated conjunctival melanoma: implications for sentinel lymph node biopsy. Ophthalmology. 2004 Apr;111(4):816–21. doi: 10.1016/j.ophtha.2003.11.001.S0161-6420(03)01626-9
    1. Mariani P, Almubarak M, Kollen M, Wagner M, Plancher C, Audollent R, Piperno-Neumann S, Cassoux N, Servois V. Radiofrequency ablation and surgical resection of liver metastases from uveal melanoma. Eur J Surg Oncol. 2016 May;42(5):706–12. doi: 10.1016/j.ejso.2016.02.019.S0748-7983(16)00114-1
    1. Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M. Developing and evaluating complex interventions: the new Medical Research Council guidance. Int J Nurs Stud. 2013 May;50(5):587–92. doi: 10.1016/j.ijnurstu.2012.09.010.S0020-7489(12)00306-9
    1. Creswell JD, Creswell JW. Research Design: Qualitative, Quantitative, and Mixed Methods Approaches 5th Edition. Thousand Oaks, California: SAGE Publications; 2018.
    1. Östlund U, Kidd L, Wengström Y, Rowa-Dewar N. Combining qualitative and quantitative research within mixed method research designs: a methodological review. Int J Nurs Stud. 2011 Mar;48(3):369–83. doi: 10.1016/j.ijnurstu.2010.10.005. S0020-7489(10)00363-9
    1. Sarradon-Eck A. Cancer(s) et psy(s) France: Érès; 2019. Le patient contemporain.
    1. Epstein S. The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials. Sci Technol Human Values. 1995;20(4):408–37. doi: 10.1177/016224399502000402.
    1. Abelson J, Li K, Wilson G, Shields K, Schneider C, Boesveld S. Supporting quality public and patient engagement in health system organizations: development and usability testing of the Public and Patient Engagement Evaluation Tool. Health Expect. 2016 Aug;19(4):817–27. doi: 10.1111/hex.12378. doi: 10.1111/hex.12378.
    1. Palinkas LA. Qualitative and mixed methods in mental health services and implementation research. J Clin Child Adolesc Psychol. 2014;43(6):851–61. doi: 10.1080/15374416.2014.910791.
    1. Brown CH, Curran G, Palinkas LA, Aarons GA, Wells KB, Jones L, Collins LM, Duan N, Mittman BS, Wallace A, Tabak RG, Ducharme L, Chambers DA, Neta G, Wiley T, Landsverk J, Cheung K, Cruden G. An overview of research and evaluation designs for dissemination and implementation. Annu Rev Public Health. 2017 Mar 20;38:1–22. doi: 10.1146/annurev-publhealth-031816-044215.
    1. Palinkas LA, Horwitz SM, Green CA, Wisdom JP, Duan N, Hoagwood K. Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Adm Policy Ment Health. 2015 Sep;42(5):533–44. doi: 10.1007/s10488-013-0528-y.
    1. Moser A, Korstjens I. Series: practical guidance to qualitative research. Part 3: sampling, data collection and analysis. Eur J Gen Pract. 2018 Dec;24(1):9–18. doi: 10.1080/13814788.2017.1375091.
    1. Morse JM. "Data were saturated . . . ". Qual Health Res. 2015 May;25(5):587–8. doi: 10.1177/1049732315576699.25/5/587
    1. Brédart A, Kop J, Griesser A, Zaman K, Panes-Ruedin B, Jeanneret W, Delaloye J, Zimmers S, Jacob A, Berthet V, Fiszer C, Dolbeault S. Validation of the 34-item Supportive Care Needs Survey and 8-item breast module French versions (SCNS-SF34-Fr and SCNS-BR8-Fr) in breast cancer patients. Eur J Cancer Care (Engl) 2012 Jul;21(4):450–9. doi: 10.1111/j.1365-2354.2012.01356.x.
    1. Razavi D, Delvaux N, Farvacques C, Robaye E. Screening for adjustment disorders and major depressive disorders in cancer in-patients. Br J Psychiatry. 1990 Jan;156:79–83. doi: 10.1192/bjp.156.1.79.S0007125000060530
    1. Muller L, Spitz E. [Multidimensional assessment of coping: validation of the Brief COPE among French population] Encephale. 2003;29(6):507–18.MDOI-ENC-12-2003-29-6-0013-7006-101019-ART5
    1. Kuliś D, Whittaker C, Greimel E, Bottomley A, Koller M. EORTC quality of life group translation procedure. EORTC. 2017. [2021-12-27]. .
    1. Hertzog MA. Considerations in determining sample size for pilot studies. Res Nurs Health. 2008 Apr;31(2):180–91. doi: 10.1002/nur.20247.
    1. Powell BJ, Waltz TJ, Chinman MJ, Damschroder LJ, Smith JL, Matthieu MM, Proctor EK, Kirchner JE. A refined compilation of implementation strategies: results from the Expert Recommendations for Implementing Change (ERIC) project. Implement Sci. 2015 Feb 12;10:21. doi: 10.1186/s13012-015-0209-1. 10.1186/s13012-015-0209-1
    1. Hasson F, Keeney S, McKenna H. Research guidelines for the Delphi survey technique. J Adv Nurs. 2000 Oct;32(4):1008–15.jan1567
    1. Thewes B, Rietjens JA, van den Berg SW, Compen FR, Abrahams H, Poort H, van de Wal M, Schellekens MP, Peters ME, Speckens AE, Knoop H, Prins JB. One way or another: the opportunities and pitfalls of self-referral and consecutive sampling as recruitment strategies for psycho-oncology intervention trials. Psychooncology. 2018 Aug;27(8):2056–9. doi: 10.1002/pon.4780.
    1. de Haes H, Bensing J. Endpoints in medical communication research, proposing a framework of functions and outcomes. Patient Educ Couns. 2009 Mar;74(3):287–94. doi: 10.1016/j.pec.2008.12.006.S0738-3991(08)00648-4
    1. Sansoni JE, Grootemaat P, Duncan C. Question Prompt Lists in health consultations: a review. Patient Educ Couns. 2015 Jun 03; doi: 10.1016/j.pec.2015.05.015.S0738-3991(15)00258-X
    1. Eggly S, Hamel LM, Foster TS, Albrecht TL, Chapman R, Harper FW, Thompson H, Griggs JJ, Gonzalez R, Berry-Bobovski L, Tkatch R, Simon M, Shields A, Gadgeel S, Loutfi R, Ali H, Wollner I, Penner LA. Randomized trial of a question prompt list to increase patient active participation during interactions with black patients and their oncologists. Patient Educ Couns. 2017 May;100(5):818–26. doi: 10.1016/j.pec.2016.12.026. S0738-3991(16)30579-1
    1. Rodenbach RA, Brandes K, Fiscella K, Kravitz RL, Butow PN, Walczak A, Duberstein PR, Sullivan P, Hoh B, Xing G, Plumb S, Epstein RM. Promoting end-of-life discussions in advanced cancer: effects of patient coaching and question prompt lists. J Clin Oncol. 2017 Mar 10;35(8):842–51. doi: 10.1200/jco.2016.68.5651.
    1. Walczak A, Butow PN, Tattersall MH, Davidson PM, Young J, Epstein RM, Costa DS, Clayton JM. Encouraging early discussion of life expectancy and end-of-life care: a randomised controlled trial of a nurse-led communication support program for patients and caregivers. Int J Nurs Stud. 2017 Feb;67:31–40. doi: 10.1016/j.ijnurstu.2016.10.008.S0020-7489(16)30198-5
    1. Stacey D, Kryworuchko J, Belkora J, Davison BJ, Durand M, Eden KB, Hoffman AS, Koerner M, Légaré F, Loiselle M, Street RL. Coaching and guidance with patient decision aids: a review of theoretical and empirical evidence. BMC Med Inform Decis Mak. 2013;13 Suppl 2:S11. doi: 10.1186/1472-6947-13-S2-S11. 1472-6947-13-S2-S11
    1. Porter LS, Pollak KI, Farrell D, Cooper M, Arnold RM, Jeffreys AS, Tulsky JA. Development and implementation of an online program to improve how patients communicate emotional concerns to their oncology providers. Support Care Cancer. 2015 Oct;23(10):2907–16. doi: 10.1007/s00520-015-2656-2. 10.1007/s00520-015-2656-2
    1. Duggleby W. What about focus group interaction data? Qual Health Res. 2005 Jul;15(6):832–40. doi: 10.1177/1049732304273916.15/6/832
    1. Damschroder LJ, Aron DC, Keith RE, Kirsh SR, Alexander JA, Lowery JC. Fostering implementation of health services research findings into practice: a consolidated framework for advancing implementation science. Implement Sci. 2009 Aug 07;4:50. doi: 10.1186/1748-5908-4-50. 1748-5908-4-50
    1. Shepherd HL, Geerligs L, Butow P, Masya L, Shaw J, Price M, Dhillon HM, Hack TF, Girgis A, Luckett T, Lovell M, Kelly B, Beale P, Grimison P, Shaw T, Viney R, Rankin NM. The elusive search for success: defining and measuring implementation outcomes in a real-world hospital trial. Front Public Health. 2019;7:293. doi: 10.3389/fpubh.2019.00293. doi: 10.3389/fpubh.2019.00293.
    1. Arthur J, Yennu S, Zapata KP, Cantu H, Wu J, Liu D, Bruera E. Perception of helpfulness of a question prompt sheet among cancer patients attending outpatient palliative care. J Pain Symptom Manage. 2017 Jan;53(1):124–30. doi: 10.1016/j.jpainsymman.2016.08.017. S0885-3924(16)30367-0
    1. Brandes K, van Weert JC. Implementing consultation audio-recordings and question prompt lists into routine cancer care: how can we address healthcare providers' barriers? Patient Educ Couns. 2017 Jun;100(6):1029–30. doi: 10.1016/j.pec.2017.04.002.S0738-3991(17)30216-1
    1. Wolderslund M, Kofoed P, Holst R, Axboe M, Ammentorp J. Digital audio recordings improve the outcomes of patient consultations: a randomised cluster trial. Patient Educ Couns. 2017 Feb;100(2):242–9. doi: 10.1016/j.pec.2016.08.029.S0738-3991(16)30405-0
    1. Yeganeh L, Johnston-Ataata K, Vincent AJ, Flore J, Kokanović R, Teede H, Boyle JA. Co-designing an early menopause digital resource: model for interdisciplinary knowledge translation. Semin Reprod Med. 2020 Sep;38(4-05):315–22. doi: 10.1055/s-0041-1726273.
    1. Aapro M, Bossi P, Dasari A, Fallowfield L, Gascón P, Geller M, Jordan K, Kim J, Martin K, Porzig S. Digital health for optimal supportive care in oncology: benefits, limits, and future perspectives. Support Care Cancer. 2020 Oct;28(10):4589–612. doi: 10.1007/s00520-020-05539-1. 10.1007/s00520-020-05539-1

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