LIVING AND COPING WITH CHRONIC LYMPHOCYTIC LEUKEMIA: A QUALITATIVE STUDY OF GREEK PATIENTS’ EXPERIENCES ON BEHALF OF ERIC, THE EUROPEAN RESEARCH INITIATIVE ON CLL
Author(s): ,
Christina Karamanidou
Affiliations:
Institute of Applied Biosciences, CERTH,Thessaloniki,Greece
,
Aliki Xochelli
Affiliations:
Institute of Applied Biosciences, CERTH,Thessaloniki,Greece
,
Paolo Ghia
Affiliations:
Division of Experimental Oncology, IRCCS San Raffaele Scientific Institute and Università Vita-Salute San Raffaele,Milan ,Italy
,
Panagiotis Panayiotidis
Affiliations:
First Department of Propaedeutic Medicine, University of Athens,Athens,Greece
Kostas Stamatopoulos
Affiliations:
Institute of Applied Biosciences, CERTH,Thessaloniki,Greece
EHA Library. XOCHELLI A. 06/15/18; 215136; PF698
Aliki XOCHELLI
Aliki XOCHELLI
Contributions
Abstract

Abstract: PF698

Type: Poster Presentation

Presentation during EHA23: On Friday, June 15, 2018 from 17:30 - 19:00

Location: Poster area

Background

Chronic illnesses require complex management that includes patients’ active participation and engagement in care. Chronic lymphocytic leukemia (CLL) is a paradigmatic chronic hematologic malignancy whose management and nature are hard for both patients to understand and physicians to explain. Therefore, understanding CLL patients’ perspective is an essential first step towards communicating effectively, responding to needs and promoting active engagement in care thus enhancing quality of life (QoL).

Aims

To explore the illness experience of Greek CLL patients within the context of ERIC’s CLL patient empowerment program.

Methods

An in-depth qualitative study with semi-structured interviews was conducted with CLL patients from all over Greece (n=30; both treated and untreated). Data collection was considered as complete by the investigators when saturation was reached i.e. no new themes emerged. Interpretative Phenomenological Analysis (IPA) was performed separately by a health psychologist and a hematologist with a 98% inter-rater reliability score. IPA looks for patterns of convergence and divergence across cases. Main themes are generated from all participants’ accounts but an idiographic approach is maintained so that individual variations within a theme are not lost.

Results

Seven main themes emerged from the participants’ accounts. (i) Diagnosis: The announcement of the word leukemia and its association with an aggressive disease cause patients concern, insecurity, depression, anxiety as well as worry for loved ones. (ii) The illness: Most patients consider themselves fortunate to be diagnosed with ‘the good leukemia’. However, CLL still causes uncertainty in patients who are baffled by the lack of symptoms and anxious about the efficacy, availability and cost of therapy. (iii) Causes: Patients attribute their illness to environmental factors e.g. exposure to chemicals; lifestyle factors e.g. consumption of certain foods; but also emotional factors like sadness or stress after negative life experiences. (iv) Life with CLL: Changes are experienced by patients on a social, professional, emotional and personal level. Most view their illness experience as an important life lesson and hold a positive outlook on life. (v) Relationship with physician: Patients clearly appreciate their physician, whom they regard as “a friend”, “a family member” and sometimes referred to him/her as “god”. They emphasize the need for a holistic approach including practical and emotional support, empathy, truth, trust, and equality (vi) Coping and self-management: Patients use a spectrum of strategies to cope with their illness and manage their emotions. These include active coping strategies such as information seeking, lifestyle changes, creative hobbies or volunteering; also, emotion-focused coping strategies such as humor, acceptance, positive thinking, social support etc. (vii) Past and current needs: A variety of elements mentioned would have helped patients throughout the course of the illness namely, reliable information regarding the disease and treatment, peer contact, experience exchange, psychological support and emergency preparedness.

Conclusion
This study’s findings have captured an insider’s perspective into the CLL illness experience and identified patient needs throughout the illness course. More studies are ongoing within ERIC at an international level so as to identify CLL patient needs in different healthcare contexts that will guide and inform the design of CLL specific patient empowerment programs.

Session topic: 36. Quality of life, palliative care, ethics and health economics

Keyword(s): Chronic Lymphocytic Leukemia, Patient, Quality of Life

Abstract: PF698

Type: Poster Presentation

Presentation during EHA23: On Friday, June 15, 2018 from 17:30 - 19:00

Location: Poster area

Background

Chronic illnesses require complex management that includes patients’ active participation and engagement in care. Chronic lymphocytic leukemia (CLL) is a paradigmatic chronic hematologic malignancy whose management and nature are hard for both patients to understand and physicians to explain. Therefore, understanding CLL patients’ perspective is an essential first step towards communicating effectively, responding to needs and promoting active engagement in care thus enhancing quality of life (QoL).

Aims

To explore the illness experience of Greek CLL patients within the context of ERIC’s CLL patient empowerment program.

Methods

An in-depth qualitative study with semi-structured interviews was conducted with CLL patients from all over Greece (n=30; both treated and untreated). Data collection was considered as complete by the investigators when saturation was reached i.e. no new themes emerged. Interpretative Phenomenological Analysis (IPA) was performed separately by a health psychologist and a hematologist with a 98% inter-rater reliability score. IPA looks for patterns of convergence and divergence across cases. Main themes are generated from all participants’ accounts but an idiographic approach is maintained so that individual variations within a theme are not lost.

Results

Seven main themes emerged from the participants’ accounts. (i) Diagnosis: The announcement of the word leukemia and its association with an aggressive disease cause patients concern, insecurity, depression, anxiety as well as worry for loved ones. (ii) The illness: Most patients consider themselves fortunate to be diagnosed with ‘the good leukemia’. However, CLL still causes uncertainty in patients who are baffled by the lack of symptoms and anxious about the efficacy, availability and cost of therapy. (iii) Causes: Patients attribute their illness to environmental factors e.g. exposure to chemicals; lifestyle factors e.g. consumption of certain foods; but also emotional factors like sadness or stress after negative life experiences. (iv) Life with CLL: Changes are experienced by patients on a social, professional, emotional and personal level. Most view their illness experience as an important life lesson and hold a positive outlook on life. (v) Relationship with physician: Patients clearly appreciate their physician, whom they regard as “a friend”, “a family member” and sometimes referred to him/her as “god”. They emphasize the need for a holistic approach including practical and emotional support, empathy, truth, trust, and equality (vi) Coping and self-management: Patients use a spectrum of strategies to cope with their illness and manage their emotions. These include active coping strategies such as information seeking, lifestyle changes, creative hobbies or volunteering; also, emotion-focused coping strategies such as humor, acceptance, positive thinking, social support etc. (vii) Past and current needs: A variety of elements mentioned would have helped patients throughout the course of the illness namely, reliable information regarding the disease and treatment, peer contact, experience exchange, psychological support and emergency preparedness.

Conclusion
This study’s findings have captured an insider’s perspective into the CLL illness experience and identified patient needs throughout the illness course. More studies are ongoing within ERIC at an international level so as to identify CLL patient needs in different healthcare contexts that will guide and inform the design of CLL specific patient empowerment programs.

Session topic: 36. Quality of life, palliative care, ethics and health economics

Keyword(s): Chronic Lymphocytic Leukemia, Patient, Quality of Life

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