Perceived information provision and satisfaction among lymphoma and multiple myeloma survivors--results from a Dutch population-based study.
To improve posttreatment care for (long-term) lymphoma survivors in the Netherlands, survivorship clinics are being developed. As information provision is an important aspect of survivorship care, our aim was to evaluate the current perceived level of and satisfaction with information received by non-Hodgkin's lymphoma (NHL), Hodgkin's lymphoma (HL) and multiple myeloma (MM) survivors, and to identify associations with sociodemographic and clinical characteristics. The population-based Eindhoven Cancer Registry was used to select all patients diagnosed with NHL, HL and MM from 1999 to 2009. In total, 1,448 survivors received a questionnaire, and 1,135 of them responded (78.4 %). The EORTC QLQ-INFO25 was used to evaluate the perceived level of and satisfaction with information. Two thirds of survivors were satisfied with the amount of received information, with HL survivors being most satisfied (74 %). At least 25 % of survivors wanted more information. Young age, having had chemotherapy, having been diagnosed more recently, using internet for information and having no comorbidities were the most important factors associated with higher perceived levels of information provision. Although information provision and satisfaction with information seems relatively good in lymphoma and MM survivors, one third expressed unmet needs. Furthermore, variations between subgroups were observed. Good information provision is known to be associated with better quality of life. Survivorship care plans could be a way to achieve this.
Research Department, Comprehensive Cancer Centre South, PO Box 231, 5600 AE Eindhoven, the Netherlands. s.oerlemans@ikz.nl
Simone
S
Oerlemans
Olga
O
Husson
Floortje
F
Mols
Philip
P
Poortmans
Henk
H
Roerdink
Laurien A
LA
Daniels
Carien L
CL
Creutzberg
Lonneke V
LV
van de Poll-Franse
D000328:Adult; D000368:Aged; D005260:Female; D006801:Humans; D008223:Lymphoma / Q000453:epidemiology / Q000523:psychology* / Q000628:therapy; D008297:Male; D008875:Middle Aged; D009101:Multiple Myeloma / Q000453:epidemiology / Q000523:psychology* / Q000628:therapy; D009426:Netherlands / Q000453:epidemiology; D017060:Patient Satisfaction; D010465:Perception; D011159:Population Surveillance / Q000379:methods; D012042:Registries; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology*