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Bull Cancer. 2017 Mar;104(3):221-231. doi: 10.1016/j.bulcan.2017.01.007. Epub 2017 Feb 15.

[Conduct of epidemiologic studies in French cancer survivors: Methods, difficulties encountered and solutions provided. Lessons learned from the SIMONAL study on long-term toxicities after non-Hodgkin lymphoma treatment].

[Article in French]

Author information

1
CHU de Nice, délégation de la recherche clinique et de l'innovation, 4, avenue Reine-Victoria, 06003 Nice, France.
2
CHU de Nice, direction du système d'information, 4, avenue Reine-Victoria, 06003 Nice, France.
3
CHU Saint-Louis, 1, avenue Claude-Vellefaux, 75010 Paris, France.
4
Institut Gustave-Roussy, 114, rue Édouard-Vaillant, 94800 Villejuif, France.
5
Centre Henri-Becquerel, rue d'Amiens, 76000 Rouen, France.
6
CHU Henri-Mondor, 51, avenue du Maréchal-de-Lattre-de-Tassigny, 94010 Créteil, France.
7
CHU Le Bocage, 14, rue Paul-Gaffarel, 21000 Dijon, France.
8
CHU de Lille, hôpital Claude-Huriez, rue Michel-Polonowski, 59000 Lille, France.
9
CHU Nancy, 5, rue du Morvan, 54500 Vandœuvre-lès-Nancy, France.
10
AP-HP, hôpital universitaire Necker-Enfants-Malades, 149, rue de Sèvres, 75015 Paris, France.
11
Institut universitaire du cancer de Toulouse, oncopôle, avenue Hubert-Curien, 31100 Toulouse, France.
12
CLCC Berar, 28, promenade Léa-et-Napoléon-Bullukian, 69008 Lyon, France.
13
Centre hospitalier Lyon-Sud, LYSA-RC, secteur Sainte-Eugénie, pavillon 6(e), 69495 Pierre-Bénite, France.
14
CHU de Caen, avenue de la Côte-de-Nacre, 14003 Caen, France.
15
Institut régional fédératif de cancérologie, 3, boulevard Fleming, 25000 Besançon, France.
16
Université Paris Descartes, 12, rue de l'École-de-Médecine, 75006 Paris, France.
17
Hospices civils de Lyon, 3, quai des Céléstins, 69002 Lyon, France.
18
CLCC Baclesse, 3, avenue du Général-Harris, 14000 Caen, France.
19
CHU de Nice, hôpital l'Archet 1, service d'onco-hématologie, 151, route Saint-Antoine-Ginestière, 06202 Nice, France. Electronic address: mounier.n@chu-nice.fr.

Abstract

INTRODUCTION:

Since the introduction of targeted therapies, specific lymphoma mortality has decreased. Possible long-term toxicities, however, are not known yet. This article describes the implementation of the SIMONAL study that investigates the hypothesis of an overconsumption of care after lymphoma treatment with a 10-year follow-up.

METHODS:

After the mandatory regulatory steps (CCTIRS and CNIL) the vital status and address of 5247 patients treated in 131 French centers were retrieved using a secure web portal, in order to send a quality of life after lymphoma questionnaire. After an additional vital status validation request at the center for epidemiologic research and population health (CESP), the questionnaires were sent. Double data entry was performed on the collected data and a request to access data from France's public health insurance scheme information system (SNIIRAM) was formulated.

RESULTS:

Retrieval of the addresses via the portal has been slow and multiple reminders were needed. The CESP identified 9.4 % additional deaths not known by the treatment centers. Of the 3391 questionnaires sent, the response rate was 50%. A comparison between the responders and non-responders revealed no demographic differences but showed that the responders were more often treated with targeted drugs as they were included in more recent trials.

DISCUSSION:

Logistic and information technology (IT) aspects rendered the implementation of the SIMONAL study more complex, time consuming and costly. However, using the collected data, many future research questions will be addressed.

KEYWORDS:

Autogreffe; Autotransplantation; Chemotherapy; Chimiothérapie; Long-term follow-up; Lymphome non Hodgkinien; Non-Hodgkin lymphoma; Rituximab; Survivants; Survivorship; Toxicités tardives

PMID:
28214006
DOI:
10.1016/j.bulcan.2017.01.007
[Indexed for MEDLINE]

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