Abstract
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.
Highlights
On January 1, 2009 there were approximately 21,000 non-Hodgkin lymphoma (NHL), 5,300 Hodgkin lymphoma (HL), and 3,300 multiple myeloma (MM) survivors in the Netherlands [1]. These numbers are expected to increase to approximately 32,000 NHL, 6,300 HL and 4,300 MM survivors by 2020 [1]
This substantial rise will result in an increasing health care burden in haematology, especially indolent lymphomas and MM, which both are characterised by a prolonged clinical course with repeated relapses and slow but ongoing progression [2]
Providing adequate information to cancer patients can reduce the psychological burden and improve patients’ quality of life (QoL) and their satisfaction with care [7, 8]. This is important since lymphoma and MM survivors report lower QoL compared to normative populations even years after diagnosis [9, 10]
Summary
On January 1, 2009 there were approximately 21,000 non-Hodgkin lymphoma (NHL), 5,300 Hodgkin lymphoma (HL), and 3,300 multiple myeloma (MM) survivors in the Netherlands [1]. To improve care for this growing group of cancer survivors, a nationwide initiative of haematologists, radiation oncologists, epidemiologists and internists has founded a Working Group named “BETTER” (“BETER” in Dutch), which is currently developing protocols for standardized long-term care for HL and NHL survivors and establishing survivorship clinics. The goals of these clinics are to minimize the occurrence and influence of late effects and to improve survivors’ quality of life (QoL) by: informing survivors about long-term risks, advice preventive measures, suggest screening and improve aftercare by providing rehabilitation programmes [3]. This is important since lymphoma and MM survivors report lower QoL compared to normative populations even years after diagnosis [9, 10]
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