8/14/2019 Patient Charter Final

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International Lymphoma

Patient Charter

Ratified by Lymphoma Coalition

members march 2006Vision Statement

This international charter was created to ensure that the more than one million people living withlymphoma worldwide1 have access to the best available care, information and support. The number oflymphoma cases is increasing rapidly2 and there is a critical need for patients to be better informedregarding their disease.3 Much can be done to improve the current situation and this is the responsibilityof society as a whole, including healthcare professionals, patient groups/advocates, governments,insurers, payors/funders, clinicians, researchers and industry. To ensure that lymphoma patientsreceive the best treatment available, it is vital that the rights outlined in this charter are adopted globally.

All patients are entitled to the rights outlined in this charter regardless of age, gender, marital status,

ethnicity, religion, sexual orientation, educational or economic background. This charter supports everystage of the patient journey through diagnosis, treatment, follow-up care and monitoring.

DiagnosisAll lymphoma patients are entit led to timelyinvestigation and an accurate diagnosis by aqualified medical expert with a specialty in blooddiseases such as haematopathology. It is criticalthat specialised imaging and scanning proceduresare utilised to determine the extent of diseaseprogression for appropriate treatment planning. Allpatients are entitled to a second opinion and referral

to a haematopathologist, who can review their caseand diagnostic material.

TreatmentPatients are entitled to have access to optimaltreatment, based on an accurate diagnosis, stage ofthe disease and current evidence-based medicine.Patients have a right to know about all availabletreatment options and should be informed of relevantclinical trials. Financial status should neither be abarrier nor a determining factor in informing patientsabout treatment options, as all patients have a right

to optimal treatment and it is in their best interest toknow about the latest advances in the field. Patientsare entitled to be an active participant in thetreatment decision-making process.

Follow-upBecause lymphoma can recur, patients are entitledto regular follow-up care and close monitoring.Lymphoma patients have a right to receive acontinuum of care provided by a dedicated teamof healthcare specialists, counsellors, nurses,nutritionists and palliative care specialists, if required.

Long-term follow-up and ongoing interaction betweenall of these parties and the patient is crucial todetermine the best course of action.

InformationPatients are entitled to be provided with allnecessary information regarding their diagnosis,treatment and overall disease management andshould be encouraged to become activeparticipants in the treatment decision process.

This information should include:1) nature of the disease

2) treatment options3) risks and side effects of treatment4) clinical trial opportunities5) patient support tools and advocacy groups

SupportPatients are entitled to be informed of all availablesupport systems, including patient support toolsand advocacy groups. Patients are entitled to havea voice in their own disease management. Patientsupport tools and advocacy groups can play a keyrole in a patients recovery process and can help

them access a host of resources, frompsychological support to family counselling.Through advocacy groups, patients can alsobecome involved in health policy discussions thatcan impact disease management for alllymphoma patients. Having the right supportnetwork is invaluable for patients at all stages oftheir illness.

References:

1. GLOBOCAN 2002: Descriptive Epidemiology Group of theInternational Agency for Research on Cancer (IARC)

2. http://www.lymphoma.org/site/pp.asp?c=bfIKIVMIG&b=382403. NOP September 2005 data on file

The Lymphoma Coalition 2006. All information contained within the Lymphoma Patient Charter should not be reproduced without the

prior consent of the Lymphoma Coalition.