Information needs of patients with hematological malignancies

Introduction
In the Netherlands, approximately 5000 new cases of  hematological malignancy are diagnosed yearly. Hematological malignancies have some important differences with solid cancers. Although, these malignancies are almost always widespread at diagnosis, they often have a good prognosis. Because of the acute onset and need for immediate treatment, providing optimal information is often difficult. The need for information of patients about their disease and treatment has been studied frequently for cancer in general. However, detailed information on the need for infomation in patients with hematological malignancies is scarce.
From clinical practice, we suspect that the verbal and written information the patient receives after the start of the treatment sometimes does not always meet the patient needs. Unmet needs for information may cause several problems regarding decision-making and quality of life. Patiens who receive optimal information may be more involved in decision-making, have more realistic expectations, greater satisfaction with treatment choices, and a better quality of life.
The aim of this study is to gain more insight in the information needs of patients with a hematological malignancy. This study investigates satisfaction with current information and unmet needs. The results may contribute to development of information tailored to the individual patient.

Method
The project consists of several components. The first part of the project comprises a cross-sectional study on the information needs of patients with a hematological malignancy. A survey based on several existing questionnaires will be send out to a group of 450 patients after cancer treatment. Furthermore, in-depth interviews will be held with patients, their partners, and physicians and nurses. Based on these data, a new questionnaire will be developed. will be developed. In the second part, a longitudinal study will be carried out asking newly diagnosed patients with hematological malignancies to participate. These patients will be followed from diagnosis up to two years after treatment.

Funding
VU University Medical Center (VUmc) and Medical Center Alkmaar (2010 - 2013).

Staff
PhD student
J.A.J. Rood, MD, AIOS Internal Medicine, Medical Center Alkmaar and dpt. of Internal Medicine, VUmc
Project members
Prof P.C. Huijgens, PhD MD, Internist-Hematologist, dpt. of Hematology, VUmc.
Prof I.M. Verdonck-de Leeuw, PhD, Psychologist, Speech and Language Therapist, Linquist, dpt.of Clinical Psychology, VU Faculty of Psychology and Education.
F. Stam, PhD MD, Vascular Medicine Internist, dpt.of Internal Medicine, Medical Center Alkmaar.
F.J. van Zuuren, PhD, Clinical Psychologist, dpt.of Clinical Psychology, VU Faculty of Psychology and Education.
C. Eeltink, RN MA, Clinical Nurse Specialist, dpt. of Hematology, VUmc.

Questions?
For questions, please contact:
Janneke Rood, MD, AIOS Internal Medicine, PhD student
E-mail: J.Rood@vumc.nl, J.A.J.Rood@mca.nl