Needs for information and reasons for (non)adherence in chronic myeloid leukaemia: Be aware of social activities disturbing daily routines

Boons, Christel C. L. M.; Harbers, Lorette; Timmers, Lonneke; Jong, Jan de; Swart, Eleonora L.; Hendrikse, N. Harry; Janssen, Jeroen; Hugtenburg, Jacqueline G.

doi:10.1111/ejh.13155

Cited by 23 publications

(39 citation statements)

References 48 publications

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“…Optimal adherence to TKI treatment is paramount to achieving an optimal molecular response, while its depth is related to treatment duration [15][16][17]31]. Despite these requirements, awareness of the possibility of successful TKI treatment discontinuation and knowledge that in the event of relapse treatment can be successfully resumed, will encourage patients who have been treated for a long time to interrupt TKI treatment for shorter or longer periods [8,[32][33][34][35]. HCPs counseling patients on longterm TKI treatment must be aware of this paradox which also urgently requires more clarity.…”

Section: Discussionmentioning

confidence: 99%

“…Especially in patients who are not yet receiving old age benefits, particularly those between 55 and 65-70 years of age, the lack of income from work can be a burden. Indeed, side effects of TKI treatment, fatigue in particular, as well as stress and mental issues are known to impact on patient activities of daily living and prevent them to work [8,32]. It has also been found that patients who discontinued treatment felt a great sense of relief and freedom [37].…”

Section: Discussionmentioning

confidence: 99%

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Tyrosine kinase inhibitor treatment discontinuation in chronic myeloid leukemia: patient views

Tromp

Timmers

Koningen

et al. 2020

Leukemia & Lymphoma

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Patients with chronic myeloid leukemia (CML) in deep molecular remission may discontinue tyrosine kinase inhibitor (TKI) treatment without relapse. The present study aims to gain insight into the views of CML patients on TKI treatment discontinuation and identify factors that are associated with their willingness to discontinue treatment. A cross-sectional study, among adult Dutch CML patients was conducted to assess willingness and their views on benefits of and concerns about discontinuation. A total of 185 patients participated of whom 76% were willing to discontinue TKI-treatment. Patients considered the absence of side effects the most important benefit whereas fear of disease recurrence was their most prominent concern. Adequate monitoring was the most important prerequisite for TKI-treatment discontinuation. However, ambiguity with respect to perquisites indicate that patients on long-term TKI treatment should be adequately informed both on the possibility to discontinue treatment and on its benefits, risks, and measures that address risks.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Tyrosine kinase inhibitor treatment discontinuation in chronic myeloid leukemia: patient views

Tromp

Timmers

Koningen

et al. 2020

Leukemia & Lymphoma

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“…Common informational needs include those related to prognosis, how to care for someone with cancer, and the benefits and toxicities of treatment [ 2 , 8 - 14 ]. Unmet information needs are associated with decreased treatment adherence [ 15 , 16 ], increased health care costs [ 17 - 19 ], anxiety [ 20 , 21 ], and depression [ 20 ].…”

Section: Introductionmentioning

confidence: 99%

“…For instance, although existing theoretical frameworks employed in the HISB cancer context [ 29 , 47 - 49 ] describe a cost-benefit relationship in terms of whether an individual will search for additional information, they do not provide guidance in terms of how to structure interventions for those affected by cancer to minimize the cost and maximize the benefit of information seeking. A theoretical framework that addresses this gap in the literature is thought to be valuable for developing interventions that address the informational needs of those living with cancer [ 1 , 4 , 11 , 12 , 14 , 15 , 35 , 38 , 48 ]. Such a framework would be capable of informing the development of interventions that support individuals in planning their lives around the short- and long-term consequences of cancer, including the receipt of treatment and altered life expectancy [ 22 , 50 ].…”

Section: Introductionmentioning

confidence: 99%

Information Access and Use by Patients With Cancer and Their Friends and Family: Development of a Grounded Theory

Thiessen¹,

Sinclair²,

Tang³

et al. 2020

J Med Internet Res

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Background Information has been identified as a commonly unmet supportive care need for those living with cancer (ie, patients and their friends and family). The information needed to help individuals plan their lives around the consequences of cancer, such as the receipt of health care, is an example of an important informational need. A suitable theory to guide the development of interventions designed to meet this informational need has not been identified by the authors. Objective The aim of this study is to generate a grounded theory capable of guiding the development of interventions designed to assist those living with cancer in meeting their informational needs. Methods Classic grounded theory was used to analyze data collected through digitally recorded one-on-one audio interviews with 31 patients with cancer and 29 friends and family members. These interviews focused on how the participants had accessed and used information to plan their lives and what barriers they faced in obtaining and using this information. Results The theory that emerged consisted of 4 variables: personal projects, cancer as a source of disruption to personal projects, information as the process of accessing and interpreting cancer-related data (CRD) to inform action, and CRD quality as defined by accessibility, credibility, applicability, and framing. CRD quality as a moderator of personal project disruption by cancer is the core concept of this theory. Conclusions Informational resources providing accessible, credible, applicable, and positively framed CRD are likely key to meeting the information needs of those affected by cancer. Web-based informational resources delivering high-quality CRD focused on assisting individuals living with cancer in maintaining and planning their personal projects are predicted to improve quality of life. Research is needed to develop and integrate resources informed by this theoretical framework into clinical practice.

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“…Due to apparently successful treatment, patients increasingly participate in social and occupational activities. However, this often interferes with their daily routines which makes patients more easily to forget or skip a dose [39,59,60,17]. On the other hand, intentional nonadherence is mostly due to perceptual barriers (i.e., beliefs) [61,62].…”

Section: Discussionmentioning

confidence: 99%

Response and Adherence to Nilotinib in Daily practice (RAND study): an in-depth observational study of chronic myeloid leukemia patients treated with nilotinib

Boons

Timmers

Janssen

et al. 2020

Eur J Clin Pharmacol

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Introduction This comprehensive observational study aimed to gain insight into adherence to nilotinib and the effect of (non)adherence on exposure (C min) and treatment outcomes. Methods Chronic myeloid leukemia (CML) patients using nilotinib were followed for 12 months. Adherence was measured by Medication Event Monitoring System (MEMS), pill count, and Medication Adherence Report Scale (MARS-5). Nilotinib C min and patient-reported outcomes (i.e., quality of life, side effects, beliefs, satisfaction) were measured at baseline, 3, 6, and 12 months. Results Sixty-eight patients (57.5 ± 15.0 years, 49% female) participated. Median adherence to nilotinib (MEMS and pill count) was ≥ 99% and adherence < 90% was rare. Self-reported nonadherence (MARS-5) increased in the first year of treatment to a third of patients. In line with the strong beliefs in the necessity of taking nilotinib, forgetting to take a dose was more prevalent than intentionally adjusting/skipping doses. Nilotinib C min were generally above the therapeutic target in 95% of patients. Patients reported a variety of side effects, of which fatigue was most frequent. The mean C min was higher in patients who reported severe itching and fatigue. The overall 1-year MMR rate ranged from 47 to 71%. Conclusion Substantial nonadherence (< 90%) to nilotinib was rare and nilotinib C min were generally above the therapeutic target. Lack of response in our group of patients was not related to nonadherence or inadequate C min. Nevertheless, a considerable number of patients experienced difficulties in adhering to the twice daily fasted dosing regimen, emphasizing the importance of continuous support of medication adherence in CML. Clinical trial registration NTR3992 (Netherlands Trial Register, www.trialregister.nl)

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Needs for information and reasons for (non)adherence in chronic myeloid leukaemia: Be aware of social activities disturbing daily routines

Cited by 23 publications

References 48 publications

Tyrosine kinase inhibitor treatment discontinuation in chronic myeloid leukemia: patient views

Tyrosine kinase inhibitor treatment discontinuation in chronic myeloid leukemia: patient views

Information Access and Use by Patients With Cancer and Their Friends and Family: Development of a Grounded Theory

Response and Adherence to Nilotinib in Daily practice (RAND study): an in-depth observational study of chronic myeloid leukemia patients treated with nilotinib

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