Abstract:Background and Objective Understanding the patient experience is important for identifying the unmet need in chronic lymphocytic leukemia. The current study aimed to develop a comprehensive chronic lymphocytic leukemia conceptual model. Methods The conceptual model was based on literature searches, review of chronic lymphocytic leukemia patient blogs/ forums, and interviews with five expert clinicians, with 20 patients who received at most one treatment (first line) for their chronic lymphocytic leukemia, and … Show more
“…If disease progression occurs, patients may experience anemia, bleeding due to low platelet counts, fatigue, weight loss, frequent infections, night sweats, and swollen lymph nodes [25]. At that stage, specifc clinical and laboratory criteria might indicate the initiation of treatment.…”
Section: Introductionmentioning
confidence: 99%
“…To the best of the authors' knowledge, there have been only two qualitative studies on the experience of people living with CLL, but the sample used was heterogenous since it included patients in diferent phases along the CLL trajectory [25,33]. Studying the experience of a more homogenous group of participants, i.e., people living with CLL in the "watch-and-wait" phase, allows for a more in-depth perspective on their particular needs and challenges (e.g., psychological, social, existential, and information needs).…”
Purpose. This study aimed to study the challenges and ways of coping with living with chronic lymphocytic leukemia (CLL) before the initiation of treatment. Methods. Semistructured interviews were carried out with 8 people living with CLL (4 males and 4 females) who had never received any treatment. Interpretative phenomenological analysis was utilized for the analysis of the data. Results. The following three themes were developed: (1) “Still waters run deep” highlights the contrast between living with minimal symptoms while experiencing high anxiety for the future, (2) “Surviving uncertainty” portrays participants’ supportive networks, communication challenges, and internal coping mechanisms to face the threatening overtones of CLL, and (3) “Turning over a new leaf” delineates participants’ realization of life’s finiteness and the way this acts as a nudge for psychological growth. Conclusion. Despite the limited physical discomfort, the CLL diagnosis and the watch-and-wait phase bring about psychological distress, which drives meaning-making efforts and an array of coping mechanisms, potentially leading to posttraumatic growth processes for people living with CLL.
“…If disease progression occurs, patients may experience anemia, bleeding due to low platelet counts, fatigue, weight loss, frequent infections, night sweats, and swollen lymph nodes [25]. At that stage, specifc clinical and laboratory criteria might indicate the initiation of treatment.…”
Section: Introductionmentioning
confidence: 99%
“…To the best of the authors' knowledge, there have been only two qualitative studies on the experience of people living with CLL, but the sample used was heterogenous since it included patients in diferent phases along the CLL trajectory [25,33]. Studying the experience of a more homogenous group of participants, i.e., people living with CLL in the "watch-and-wait" phase, allows for a more in-depth perspective on their particular needs and challenges (e.g., psychological, social, existential, and information needs).…”
Purpose. This study aimed to study the challenges and ways of coping with living with chronic lymphocytic leukemia (CLL) before the initiation of treatment. Methods. Semistructured interviews were carried out with 8 people living with CLL (4 males and 4 females) who had never received any treatment. Interpretative phenomenological analysis was utilized for the analysis of the data. Results. The following three themes were developed: (1) “Still waters run deep” highlights the contrast between living with minimal symptoms while experiencing high anxiety for the future, (2) “Surviving uncertainty” portrays participants’ supportive networks, communication challenges, and internal coping mechanisms to face the threatening overtones of CLL, and (3) “Turning over a new leaf” delineates participants’ realization of life’s finiteness and the way this acts as a nudge for psychological growth. Conclusion. Despite the limited physical discomfort, the CLL diagnosis and the watch-and-wait phase bring about psychological distress, which drives meaning-making efforts and an array of coping mechanisms, potentially leading to posttraumatic growth processes for people living with CLL.
“…Currently, treating CLL does not lead to a complete cure, hence a key goal in patient care has been improving patients' quality of life (QoL) [1]. CLL treatment and adverse drug reactions (ADRs) and drug-drug interactions (DDIs) impact the physical and emotional patient status, resulting in anxiety, depression and/or fear of death [2]. They also significantly impact patient therapy adherence and can lead to treatment stop [3], sometimes even without discussion with their physician [4].…”
Adverse Drug Reactions (ADRs) cause significant impact for patients’ Quality of Life (QoL) and vastly increase costs, especially regarding chronic diseases. To this end, we propose a platform that aims at supporting the management of patients with Chronic Lymphocytic Leukemia (CLL), via an eHealth platform facilitating inter-physician interaction and the provision of treatment consultation by a specialized ADR management team comprised of CLL experts.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.