Perceived information provision and satisfaction a

Authors: Simone Oerlemans Olga Husson Floortje Mols Philip Poortmans Henk Roerdink Laurien A Daniels Carien L Creutzberg Lonneke V van de PollFranse

Publish Date: 2012/05/26

Volume: 91, Issue: 10, Pages: 1587-1595

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Abstract

To improve posttreatment care for longterm 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 nonHodgkin’s lymphoma NHL Hodgkin’s lymphoma HL and multiple myeloma MM survivors and to identify associations with sociodemographic and clinical characteristics The populationbased Eindhoven Cancer Registry was used to select all patients diagnosed with NHL HL and MM from 1999 to 2009 In total 1448 survivors received a questionnaire and 1135 of them responded 784  The EORTC QLQINFO25 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 thisOn January 1 2009 there were approximately 21000 nonHodgkin lymphoma NHL 5300 Hodgkin lymphoma HL and 3300 multiple myeloma MM survivors in the Netherlands 1 These numbers are expected to increase to approximately 32000 NHL 6300 HL and 4300 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 2To 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 longterm 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 longterm risks advice preventive measures suggest screening and improve aftercare by providing rehabilitation programmes 3Patient information is an essential component of cancer care and rehabilitation 4 Patients who are well informed about their cancer treatment and aftercare are more likely to complete their therapy and are less anxious thereafter 5 6 Providing adequate information to cancer patients can reduce the psychological burden and improve patients’ 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 10Up to now no studies have investigated the perceived level of and satisfaction with information provision in NHL HL and MM survivors If factors associated with information satisfaction are known health care providers can better give adequate information to those who need it which can contribute to an improved quality of care and QoL The aim of the present study was therefore to measure the perceived level of and satisfaction with information received by survivors of indolent NHL INHL aggressive NHL ANHL HL and MM and to identify associations with sociodemographic and clinical characteristics for each tumour typeThis study is part of a dynamic longitudinal populationbased survey among lymphoma and MM survivors registered within the Eindhoven Cancer Registry ECR of the Comprehensive Cancer Centre South and is embedded in PopulationBased HAematological Registry for Observational Studies The ECR records data on all patients who are newly diagnosed with cancer in the southern part of the Netherlands an area with 23 million inhabitants 18 hospital locations and 2 large radiotherapy institutes The ECR was used to select all patients who were diagnosed with NHL HL and MM between January 1 1999 and January 1 2009 We included all subtypes of indolent including chronic lymphocytic leukaemialike and aggressive B cell NHL HL and MM as defined by the International Classification of Diseases for Oncology3 codes 11Data collection took place in 2009 and was done within PROFILES Patient Reported Outcomes Following Initial treatment and Longterm Evaluation of Survivorship PROFILES is a registry for the study of the physical and psychosocial impact of cancer and its treatment from a dynamic growing populationbased cohort of both short and longterm cancer survivors PROFILES contains a large webbased component and is linked directly to clinical data from ECR Details of the data collection method have been previously described 12 Data from the PROFILES registry will become available for noncommercial scientific research subject to study question privacy and confidentiality restrictions and registration wwwprofilesregistrynl

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