Anxiety, depression and fear of cancer recurrence in uveal melanoma survivors and ophthalmologist/oncologist communication during survivorship in France - protocol of a prospective observational mixed-method study

被引:0
作者
Muller, Anita [1 ,2 ]
Dolbeault, Sylvie [2 ,3 ]
Piperno-Neumann, Sophie [4 ]
Clerc, Morgane [2 ]
Jarry, Paulin [5 ]
Cassoux, Nathalie [5 ,6 ,7 ]
Rouic, Livia Lumbroso-Le [5 ]
Matet, Alexandre [5 ,7 ,8 ]
Rodrigues, Manuel [4 ,9 ]
Holzner, Bernhard [10 ,11 ]
Malaise, Denis [5 ,8 ,12 ]
Bredart, Anne [1 ,2 ]
机构
[1] Paris City Univ, Psychol Inst, Psychopathol & Hlth Proc Lab, UR4057,ED 261, Boulogne Billancourt, France
[2] Inst Curie, Dept Support Care, Psycho Oncol Unit, Paris, France
[3] Univ Paris Sud, UMRS1018, INSERM, CESP Ctr Res Epidemiol & Populat Hlth,U1018, Villejuif, France
[4] PSL Res Univ, Inst Curie, Dept Med Oncol, Paris, France
[5] PSL Res Univ, Inst Curie, Dept Ocular Oncol, Paris, France
[6] PSL Res Univ, Inst Curie, Cell Biol & Canc Unit, CNRS,UMR144, Paris, France
[7] Paris Cite Univ, UFR Med, Paris, France
[8] Sorbonne Paris Cite Univ, Ctr Rech Cordeliers, Physiopathol Ocular Dis Clin Dev, INSERM,UMRS1138,Physiopathol Ocular Dis Clin Dev, Team 17, Paris, France
[9] PSL Res Univ, INSERM, Canc Heterogene Instabil & Plast, INSERM,Unit 830, Paris, France
[10] Med Univ Innsbruck, Univ Hosp Psychiat 2, Innsbruck, Austria
[11] Evaluat Software Dev Ltd, Innsbruck, Austria
[12] PSL Res Univ, Inst Curie, Translat Res Dept, Lab Preclin Invest, Paris, France
关键词
Uveal melanoma; Survivorship; Quality of life; Fear of recurrence; Anxiety; Depression; Genomic testing; QUALITY-OF-LIFE; BREAST-CANCER; INFORMATION PROVISION; CHOROIDAL MELANOMA; HOSPITAL ANXIETY; COMMON-SENSE; SATISFACTION; ENUCLEATION; UNCERTAINTY; EXPERIENCES;
D O I
10.1186/s12888-024-06265-2
中图分类号
R749 [精神病学];
学科分类号
100205 ;
摘要
BackgroundQuality of life (QoL) in patients undergoing surveillance for uveal melanoma (UM) can be affected by psychological sequelae. Fear of cancer recurrence (FCR) may be acute especially when prognostication indicates an increased risk of metastatic recurrence. Communication with an ophthalmologist or oncologist can then play a key role in impacting QoL.MethodsIn this prospective study co-designed with patient's partners and using a mixed-method approach, 250 patients at high versus low risk of metastatic recurrence are recruited in a national UM reference centre in France. At T1, after the 6-months post-treatment surveillance visit, dyads of clinicians and eligible patients complete a questionnaire to assess their respective experience of the communication during that consultation. Patients also complete questionnaires assessing their health literacy, information preference, and satisfaction with the information received (EORTC QLQ-INFO25), genomic testing knowledge, genomic test result receipt, satisfaction with medical care (EORTC PATSAT-C33), perceived recurrence risk, anxiety and depression (HADS), fear of cancer recurrence (FCRI) and quality of life (EORTC QLQ-C30 and QLQ-OPT30). At 12-months post-treatment (T2), patients complete again the HADS, FCRI, EORTC QLQ-C30 and QLQ-OPT30. Multilevel analyses will assess the effect of satisfaction with the information received on FCR and QoL accounting for the clinicians' and patients' characteristics. In-depth interviews planned sequentially with approximate to 25 patients will deepen understanding of patients' care experience.DiscussionAs information on prognosis based on medical parameters becomes widely integrated into oncology practice, this study will highlight UM survivors' information expectations and satisfaction with communication, and its effect on FCR and QoL. Culturally adapted recommendations for doctor-patient communication will be provided for contexts of oncology surveillance involving poor prognosis in cases of recurrence.Trial registrationNCT06073548 (October 4, 2023).
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页数:13
相关论文
共 90 条
[1]   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].
AARONSON, NK ;
AHMEDZAI, S ;
BERGMAN, B ;
BULLINGER, M ;
CULL, A ;
DUEZ, NJ ;
FILIBERTI, A ;
FLECHTNER, H ;
FLEISHMAN, SB ;
DEHAES, JCJM ;
KAASA, S ;
KLEE, M ;
OSOBA, D ;
RAZAVI, D ;
ROFE, PB ;
SCHRAUB, S ;
SNEEUW, K ;
SULLIVAN, M ;
TAKEDA, F .
JOURNAL OF THE NATIONAL CANCER INSTITUTE, 1993, 85 (05) :365-376
[2]   Depression and quality of life during treatment of ocular bulb removal in individuals with uveal melanoma [J].
Amaro, T. A. C. ;
Yazigi, L. ;
Erwenne, C. .
EUROPEAN JOURNAL OF CANCER CARE, 2010, 19 (04) :476-481
[3]   Quality of life considerations in uveal melanoma patients: a systematic review [J].
Anchouche, Sonia ;
Liu, Jiaru ;
Zaguia, Fatma ;
Nassrallah, Georges ;
Deschenes, Jean .
CANADIAN JOURNAL OF OPHTHALMOLOGY-JOURNAL CANADIEN D OPHTALMOLOGIE, 2020, 55 (05) :413-423
[4]  
Bell Melanie L, 2016, BMC Res Notes, V9, P479
[5]   Reactions to and Desire for Prognostic Testing in Choroidal Melanoma Patients [J].
Beran, Tammy M. ;
McCannel, Tara A. ;
Stanton, Annette L. ;
Straatsma, Bradley R. ;
Burgess, Barry L. .
JOURNAL OF GENETIC COUNSELING, 2009, 18 (03) :265-274
[6]   Patient perspectives on molecular tumor profiling: "Why wouldn't you?" [J].
Best, Megan C. ;
Bartley, Nicole ;
Jacobs, Chris ;
Juraskova, Ilona ;
Goldstein, David ;
Newson, Ainsley J. ;
Savard, Jacqueline ;
Meiser, Bettina ;
Ballinger, Mandy ;
Napier, Christine ;
Thomas, David ;
Biesecker, Barbara ;
Butow, Phyllis ;
Tucker, Katherine ;
Schlub, Timothy ;
Vines, Richard ;
Vines, Kate ;
Kirk, Judy ;
Young, Mary-Anne .
BMC CANCER, 2019, 19 (1)
[7]   Patients' perceptions of gene expression profiling in breast cancer treatment decisions [J].
Bombard, Y. ;
Rozmovits, L. ;
Trudeau, M. E. ;
Leighl, N. B. ;
Deal, K. ;
Marshall, D. A. .
CURRENT ONCOLOGY, 2014, 21 (02) :E203-E211
[8]   Sample size requirements for multiple regression interval estimation [J].
Bonett, Douglas G. ;
Wright, Thomas A. .
JOURNAL OF ORGANIZATIONAL BEHAVIOR, 2011, 32 (06) :822-830
[9]  
Brandberg Y, Development and Pre-Testing (Phase I-III)
[10]   Phase III study of the European Organisation for Research and Treatment of Cancer satisfaction with cancer care core questionnaire (EORTC PATSAT-C33) and specific complementary outpatient module (EORTC OUT-PATSAT7) [J].
Bredart, A. ;
Anota, A. ;
Young, T. ;
Tomaszewski, K. A. ;
Arraras, J. I. ;
Moura De Albuquerque Melo, H. ;
Schmidt, H. ;
Friend, E. ;
Bergenmar, M. ;
Costantini, A. ;
Vassiliou, V. ;
Hureaux, J. ;
Marchal, F. ;
Tomaszewska, I. M. ;
Chie, W. -C. ;
Ramage, J. ;
Beaudeau, A. ;
Conroy, T. ;
Bleiker, E. ;
Kulis, D. ;
Bonnetain, F. ;
Aaronson, N. K. .
EUROPEAN JOURNAL OF CANCER CARE, 2018, 27 (01)