Contributions
Abstract: PB1501
Type: Publication Only
Session title: Chronic lymphocytic leukemia and related disorders - Clinical
Background
Chronic lymphocytic leukemia (CLL) is a B-cell hematological malignancy of elderly population with varied presentation and multiple therapeutic options available for disease management. There are lack of studies on patient journeys in India which would provide key insights about the disease, impact the current management and quality of life of patients.
Aims
This study aims to leverage the benefits to provide the patient perspective of CLL in India which may help mitigate the current gaps and expectations regarding comprehensive care.
Methods
A focused group discussion was conducted on an online platform using a semi-structured discussion guide, with four CLL patients and two caregivers of CLL patients, of India. The duration of the meeting was 90 minutes. The discussions were focused on understanding the symptoms, diagnosis, treatment, follow up and quality of life of CLL patients. The information obtained was analyzed to identify the common trends and patterns related to the patient’s health, emotional state and challenges encountered throughout the clinical course of the disease.
Results
Common symptoms observed by patients that led to primary care physician visits were unexplained weight loss, fever, fatigue, breathlessness and repetitive infections. The first point of contact were primary care physicians where patient were treated and there was a delay of 6-7 months from onset of symptoms to diagnosis of CLL and reaching specialist. Patients were anxious about the disease progression despite of completing treatment and there were psychological, emotional and financial burden associated with the disease which lead to treatment discontinuation and impact in patient morale. There is a need for psychological counselling, guidance and patient advocacy group support, peer to peer interaction, disease awareness initiatives and cost effective treatment options to improve the patient related outcomes in CLL.
Conclusion
The present study highlights the need for disease education, support to reduce diagnosis time, recurrence of disease and additionally patients support groups and counseling to improve patient’s morale and adherence to treatment thus enhancing the quality of life in CLL patients.
Keyword(s): Chronic lymphocytic leukemia, Quality of life
Abstract: PB1501
Type: Publication Only
Session title: Chronic lymphocytic leukemia and related disorders - Clinical
Background
Chronic lymphocytic leukemia (CLL) is a B-cell hematological malignancy of elderly population with varied presentation and multiple therapeutic options available for disease management. There are lack of studies on patient journeys in India which would provide key insights about the disease, impact the current management and quality of life of patients.
Aims
This study aims to leverage the benefits to provide the patient perspective of CLL in India which may help mitigate the current gaps and expectations regarding comprehensive care.
Methods
A focused group discussion was conducted on an online platform using a semi-structured discussion guide, with four CLL patients and two caregivers of CLL patients, of India. The duration of the meeting was 90 minutes. The discussions were focused on understanding the symptoms, diagnosis, treatment, follow up and quality of life of CLL patients. The information obtained was analyzed to identify the common trends and patterns related to the patient’s health, emotional state and challenges encountered throughout the clinical course of the disease.
Results
Common symptoms observed by patients that led to primary care physician visits were unexplained weight loss, fever, fatigue, breathlessness and repetitive infections. The first point of contact were primary care physicians where patient were treated and there was a delay of 6-7 months from onset of symptoms to diagnosis of CLL and reaching specialist. Patients were anxious about the disease progression despite of completing treatment and there were psychological, emotional and financial burden associated with the disease which lead to treatment discontinuation and impact in patient morale. There is a need for psychological counselling, guidance and patient advocacy group support, peer to peer interaction, disease awareness initiatives and cost effective treatment options to improve the patient related outcomes in CLL.
Conclusion
The present study highlights the need for disease education, support to reduce diagnosis time, recurrence of disease and additionally patients support groups and counseling to improve patient’s morale and adherence to treatment thus enhancing the quality of life in CLL patients.
Keyword(s): Chronic lymphocytic leukemia, Quality of life