Managing Chronic Myeloid Leukemia: A Coordinated Team Care Perspective

Holloway, Stacie; Lord, Katharine; Bethelmie-Bryan, Beverly; Shepard, Marian; Neely, Jessica; McLemore, Morgan L.; Reddy, Satyanarayan K.; Montero, Aldemar; Jonas, William; Gladney, Sara Pierson; Khanwani, S.; Reddy, Silpa C.; Lahiry, Anup K.; Heffner, Leonard T.; Winton, Elliott F.; Arellano, Martha; Khoury, H. Jean

doi:10.1016/j.clml.2011.10.004

Cited by 13 publications

(14 citation statements)

References 25 publications

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“…Predictors of high adherence included patients feeling well informed about their treatment and taking an active part in treatment decisions, and followup with a single hematologist [Jonsson et al 2012]. These findings are in line with the experiences at a US center, where an outpatient coordinated team care approach for patients with CML -involving effective patient education about their disease and monitoring requirements, as well as clear communication pathways between all members of the multidisciplinary team and the patient -was found to boost patient engagement and adherence, both to clinic visits and TKI therapy [Holloway et al 2012]. In contrast, other studies have reported poor adherence in patients with CML receiving long-term treatment with imatinib.…”

Section: Exploring the Role Of Observational Studies In CMLsupporting

confidence: 80%

The role of observational studies in optimizing the clinical management of chronic myeloid leukemia

Mauro

Davis

Zyczynski

et al. 2014

Therapeutic Advances in Hematology

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Survival has increased dramatically for patients with chronic phase chronic myeloid leukemia (CP-CML) using BCR-ABL targeted tyrosine kinase inhibitors, such that life expectancy is expected to approximate that of patients without CP-CML. Randomized controlled trials (RCTs) and observational studies provide valuable insights into the management of chronic diseases such as CP-CML. RCTs are undoubtedly the backbone of clinical research, and the 'gold standard' for evaluating the efficacy and safety of new therapies. However, many questions surrounding the optimal management of patients with CML remain unanswered, and it is widely accepted that these questions will be best answered by evaluating the use of available therapies in clinical practice. Observational studies can extend the knowledge base beyond the clinical trial setting and thus capture a more accurate picture of everyday clinical practice, particularly patients' experiences of long-term CML treatment. There is therefore growing interest in and appreciation of the value of observational research. This review article will examine the relative merits of RCTs and observational studies in the setting of CML, highlighting those factors - such as the advancing age of the CML patient population and growing importance of patient-reported outcomes - that mean that observational studies should play an important role in shaping clinical practice. This article also provides an overview of what observational studies have told us thus far about the optimal management of patients with CML, outlines some of the key remaining unanswered clinical questions in CML, and summarizes ongoing observational studies designed to provide answers to these key questions.

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Section: Exploring the Role Of Observational Studies In CMLsupporting

confidence: 80%

The role of observational studies in optimizing the clinical management of chronic myeloid leukemia

Mauro

Davis

Zyczynski

et al. 2014

Therapeutic Advances in Hematology

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“…A multidisciplinary approach may be a good tool for dealing with this challenge. 13 While demonstrating less knowledge than they should about their own health monitoring, the patients interviewed seemed satisfied with the doctor-patient relationship. Only 2% said that the consultation time was too short.…”

Section: Discussionmentioning

confidence: 99%

“…13,14 In the context of chronic diseases, cancer is seen in the popular imagination as a cause of rapid finitude and suffering, among other meanings. Although there are cultural differences in how the disease and patients' expectations regarding the physician's role are viewed, 15 even without universal policies to inform and involve patients in decisions that affect their care, 16 most patients want information about their diagnosis and want their families to also be informed, even when their illnesses are severe.…”

Section: Introductionmentioning

confidence: 99%

“…Although there are cultural differences in how the disease and patients' expectations regarding the physician's role are viewed, 15 even without universal policies to inform and involve patients in decisions that affect their care, 16 most patients want information about their diagnosis and want their families to also be informed, even when their illnesses are severe. [17][18][19][20] This has proved to be an important therapeutic tool, 13,21 and some authors have suggested that this information decreases the patient's sense of isolation and contributes towards mutual cooperation in the doctor-patient relationship. 21 Hematology-oncology is a specialty that deals with patients who now can count on increased survival based on the proposed treatments -treatments that, of course, are not without risks or side effects, but are tolerable.…”

Section: Introductionmentioning

confidence: 99%

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Patients' perceptions about diagnosis and treatment of chronic myeloid leukemia: a cross-sectional study among Brazilian patients

et al. 2014

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CONTEXT AND OBJECTIVES: Chronic myeloid leukemia (CML) requires strict daily compliance with oral medication and regular blood and bone marrow control tests. The objective was to evaluate CML patients' perceptions about the disease, their access to information regarding the diagnosis, monitoring and treatment, adverse effects and associations of these variables with patients' demographics, region and healthcare access. DESIGN AND SETTING: Prospective cross-sectional study among CML patients registered with the Brazilian Lymphoma and Leukemia Association (ABRALE). METHODS: CML patients receiving treatment through the public healthcare system were interviewed by telephone. RESULTS: Among 1,102 patients interviewed, the symptoms most frequently leading them to seek medical care were weakness or fatigue. One third were diagnosed by means of routine tests. The time that elapsed between first symptoms and seeking medical care was 42.28 ± 154.21 days. Most patients had been tested at least once for Philadelphia chromosome, but 43.2% did not know the results. 64.8% had had polymerase chain reaction testing for the BCR/ABL gene every three months. 47% believed that CML could be controlled, but 33.1% believed that there was no treatment. About 24% reported occasionally stopping their medication. Imatinib was associated with nausea, cramps and muscle pain. Self-reported treatment adherence was significantly associated with normalized blood count, and positively associated with imatinib. CONCLUSIONS: There is a lack of information or understanding about disease monitoring tools among Brazilian CML patients; they are diagnosed quickly and have good access to treatment. Correct comprehension of CML control tools is impaired in Brazilian patients. RESUMO CONTEXTO E OBJETIVOS:Leucemia mieloide crônica (CML) exige estrita adesão à medicação oral e ao monitoramento do sangue e da medula. O objetivo foi avaliar percepções de pacientes com leucemia mieloide crônica (LMC) sobre a doença, seu acesso à informação sobre diagnóstico, monitoramento e tratamento, efeitos adversos e a associação destes com dados demográficos, geográficos e de acesso a tratamento. DESENHO E LOCAL: Estudo prospectivo transversal realizado com pacientes de LMC cadastrados na Associação Brasileira de Leucemia e Linfoma (Abrale). MÉTODOS: Pacientes com LMC recebendo tratamento do sistema público de saúde foram entrevistados por telefone. RESULTADOS: Entre os 1.102 pacientes entrevistados, os sintomas mais frequentemente levando à busca de consulta foram fraqueza e fadiga. Um terço foi diagnosticado por exames de rotina. O tempo entre sintoma inicial e procura por ajuda foi de 42,28 ± 154,21 dias. A maioria foi testada pelo menos uma vez para o cromossomo Filadélfia, mas 43,2% não sabiam os resultados. 64,8% fizeram exame de reação em cadeia da polimerase para o gene BCR/ABL a cada três meses. 47% acreditavam que LMC pode ser controlada, mas 33,1% acham que não há tratamento. Cerca de 24% disseram que ocasionalmente interrompem o tratamento. Imatinibe as...

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“…In addition, a team approach, consisting of a social worker, nurse and pharmacist assisting the provider, has the potential to increase adherence. 29 For patients with CML where adherence translates into the difference between long term cancer control and refractory disease or progression to a blastic phase, efforts to increase adherence through novel ideas is as important as the physician/patient relationship.…”

Section: Adherence and Compliance To Therapymentioning

confidence: 99%

How we will treat chronic myeloid leukemia in 2016

et al. 2015

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Imatinib will become generic in 2016; assuming that its price will decrease precipitously, we expect that the economic forces will change our current practice habits. We reviewed the literature on the current recommendations to treat chronic myeloid leukemia and highlight how we plan to deal with these changes. Specifically, we propose to better characterize patients according to prognostic scores, to allow more attention to those at high risk for disease progression, e.g., three-month guidelines and BCR/ABL1 message half-time, emphasize compliance by using contemporary technologies, and increase the importance of early monitoring. We hope that our message will open communication between providers, insurance companies and healthcare authorities to offer the best care for our patients.

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Managing Chronic Myeloid Leukemia: A Coordinated Team Care Perspective

Cited by 13 publications

References 25 publications

The role of observational studies in optimizing the clinical management of chronic myeloid leukemia

The role of observational studies in optimizing the clinical management of chronic myeloid leukemia

Patients' perceptions about diagnosis and treatment of chronic myeloid leukemia: a cross-sectional study among Brazilian patients

How we will treat chronic myeloid leukemia in 2016

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