Critical parameters to be evaluated in each study that involves patient care are often dictated by the disease in question. With this in mind, and in order to allow progress and guidance to develop a comprehensive framework, we chose to concentrate on Chronic Lymphocytic Leukemia (CLL), an exemplary hematological cancer characterized by exceptional heterogeneity and unpredictable clinical course.
Our goal is to set the foundation for a new model in the management of CLL based on empowering patients to actively participate in decision-making through the following actions: (i) provision of support to patients and carers at multiple levels during the course of the disease; and, (ii) design of a specific training program aiming to guide health professionals through various points in the course of the disease (diagnosis, treatment initiation, announcing bad news, etc.) and through different challenges (non-compliance, refusal of treatment etc).
The proposed CLL patient empowerment program is structured in three distinct phases:
1) Phase I – “Needs Assessment”: Qualitative studies involving semi-structured, personal interviews with healthcare professionals and patients in order to assess current needs with regards to: more effective patient-doctor, patient-nurse communication, better self-management and management of the disease, enhancement of health literacy and communication of medical information by the expert to the non-expert, and support of the role of the healthcare professionals as well as the patients’ adjustment to the disease.
2) Phase II – “Program Design and Development of an Electronic Health Platform”: It involves the development of support actions, communication tools, self-evaluation and self-management tools as well as educational material (also in Czech) einitially guided by bibliographic research and further improved by the analysis of field data collected during the needs’ assessment phase. All of the above tools and materials will be hosted on a common, secure, specially designed online platform which will be user-friendly in order to promote active user engagement.
3) Phase III – “Implementation and Evaluation of the Program through a Pilot Study; Support of the Electronic Platform”: The objectives of the pilot study are to confirm the practical value of the proposed patient empowerment program and to indicate the points that need adjustments in order to achieve better implementation in everyday clinical practice. The support of the online platform is considered a continuous process necessary to ensure the smooth initiation and regular evaluation of the program, allowing for further future expansion.
The proposed CLL patient empowerment program aims to achieve:
• improved interaction between patients, carers and healthcare professionals, thus facilitating active patient involvement in disease management processes
• increased confidence in decision support systems for disease / patient management
• reduced hospitalization time thanks to improved disease management and the best possible therapeutic intervention at the time of need
• reduced days of work absences for both patients and their relatives who usually accompany them during their visits to doctors
• a real improvement in the daily activities of patients
• empowerment of patients to actively participate in managing the disease, which can inspire them to participate more actively in society: more active patients are more active citizens, more active professionals, more active parents and more active friends.
The program is supported by Gilead Sciences Greece, Janssen Cilag Greece and Janssen EMEA and is under the auspices of the Hellenic Society of Haematology (HSH) and the European Research Initiative for CLL (ERIC).
We kindly thank the Hellenic Group of Patients with Chronic Lymphocytic Leukemia (http://cll.gr/) for its significant help during all stages of development of the educational material.
Living and coping with chronic lymphocytic leukemia: A qualitative study of Greek patient’s experiences on behalf of ERIC, the European research initiative on CLL. Presented at Poster session (Poster number: RF698) of the 23rd European Hematology Association (EHA) Congress, June 2018, Stockholm, Sweden.
Patient Empowerment: What do Patients & Physicians Need? Presented at the CLL Horizons meeting, 2018, Prague, Czech Republic.
Do physicians need help to better communicate with patients? Presented at the Lymphoma Coalition Europe Members Meeting, 13th-14th March, 2017, Madrid, Spain
CLL Patient Empowerment Program. Presented at the European Initiative on CLL (ERIC) members meeting at the European Hematology Association (EHA) Congress, 21st-25th June, Madrid, Spain, 2017 http://www.ericll.org/pages/meeting/patientempowerment
Do physicians need help to adequately inform and support patients with Chronic Lymphocytic Leukemia? Results from a qualitative study in Greece. Presented at Poster session (Poster number: P378) of the 22nd European Hematology Association (EHA) Congress, June 2017, Madrid, Spain
The results of the physicians’ needs assessment phase as presented on the Video Journal of Hematological Oncology
Approaching empowerment holistically: Are physicians willing and able? Oral presentation at Dhealth forum, Athens, 2017
Patients show the way-a step towards empowerment. Oral presentation at Dhealth forum, Athens, 2017
Collaborative study with Lymphoma Coalition :
Correlation of Lymphoma Patient Information Level with Healthcare Experience. Natalie Dren, Lorna Warwick, Karen Van Rassel, Theodoros Moysiadis, Christina Karamanidou and Aliki Xochelli. Presented at Poster session (Poster number: 4782) of the 60th ASH annual meeting & Exposition , December 2018, San Diego, CA.
In early 2008, Lymphoma Coalition (LC) launched its first Global Patient Survey. Since then, LC has established the tradition of launching a global patient survey every two years. Through this survey, patient experience in lymphomas as well as the impact of treatment and care can be better understood, and LC and its global members can bring the patient voice forward.
The 2018 Global Patient Survey went live in January 2018 and closed in March 2018. It was prepared and made available in 19 languages through at least 65 patient organisations’ social media, the Lymphoma Hub, scientific partners, INTERLYMPH, and a small portion of the healthcare community. Overall, 6,631 participants took part from all over the world .
The Institute of Applied Biosciences at CERTH, The Centre for Research and Technology Hellas (INAB | CERTH) performed the analysis and wrote the report .
Aliki Xochelli (Hematologist) – firstname.lastname@example.org
Christina Karamanidou (Health Psychologist) – email@example.com
Kostas Stamatopoulos (Hematologist) – firstname.lastname@example.org