Challenges to Care and Medication Adherence of Patients With Chronic Myeloid Leukemia in a Resource Limited Setting

Abstract

The factors related to care of patients with chronic myeloid leukemia (CML) often affects treatment outcome. We examined adherence to medication and other challenges to care in our patients on treatment of CML. This qualitative study involved in-depth interviews of 20 patients with CML receiving free imatinib (Glivec) from the Glivec International Patients’ Assistance Program. Data collected were thematically analyzed. Findings revealed that despite free drug assistance, there was relative lack of awareness resulting in inappropriate health-seeking behavior. The challenges cut across situations such as poverty, fear of the sustenance of the compassionate drug program, and living far away from the clinic. Forgetfulness was reported as the cause of poor adherence in this study. Suggested solutions include increasing community awareness, ensuring sustainability of the program and establishing more treatment centers nationwide. Strategies such as reminders and patents’ support will improve drug adherence among this cohort.

Experiences of living with chronic myeloid leukaemia and adhering to tyrosine kinase inhibitors: A thematic synthesis of qualitative studies

“…Physical symptoms commonly included nausea and/or vomiting, pain, skin problems and fatigue. Medication and disease effects were reported as impacting on daily life, usual activities and adherence (Bolarinwa et al, 2018;Boons et al, 2018;Chen et al, 2014;Eliasson et al, 2011;Lim et al, 2017;Tan et al, 2017;Wu et al, 2015):…”

“…I felt that I was unbeatable. The diagnosis initially destroyed me and my perceived strength" (Graffigna et al, 2017 Side effects could, however, be mild, or managed by switching to second generation TKIs (Bolarinwa et al, 2018;Chen et al, 2014;Eliasson et al, 2011;Guilhot et al, 2013;Lim et al, 2017).…”

“…Many areas of life were affected by CML and its treatment; including employment, leisure activities and family roles (Bolarinwa et al, 2018;Boons et al, 2018;Chen et al, 2014;Eliasson et al, 2011;Graffigna et al, 2017;Guilhot et al, 2013;Lim et al, 2017;Wu et al, 2015). Practical concerns about employment and financial matters were reported by several patients, in relation to side effects of TKIs, the need for frequent hospital appointments or stigma relating to the disease (Chen et al, 2014;Graffigna et al, 2017;Guilhot et al, 2013;Tan et al, 2017) In response, patients adapted their routines to cope and manage, including changing work commitments and/or stopping hobbies (Boons et al, 2018;Chen et al, 2014;Eliasson et al, 2011;Graffigna et al, 2017;Guilhot et al, 2013):…”

“…At that stage I was certain that 'the worst' was still to come." (Graffigna et al, 2017 This was followed by a process of adaptation, involving the dissipation of anxious feelings, before disease/treatment acceptance (Bolarinwa et al, 2018;Boons et al, 2018;Chen et al, 2014;Eliasson et al, 2011;Graffigna et al, 2017;Guilhot et al, 2013;Lim et al, 2017;Wu et al, 2015). Adaptation was an active process, involving growing knowledge and understanding of disease, increased awareness of blood results showing treatment response, and activity adjustments: (Guilhot et al, 2013, p89) One study reported patients finding it easier to talk about their disease once they had reached acceptance, with people diagnosed more recently saying they found adaptation easier, possibly due to the availability of effective treatments, with better prognosis (Guilhot et al, 2013).…”

“…Adaptation was an active process, involving growing knowledge and understanding of disease, increased awareness of blood results showing treatment response, and activity adjustments: (Guilhot et al, 2013, p89) One study reported patients finding it easier to talk about their disease once they had reached acceptance, with people diagnosed more recently saying they found adaptation easier, possibly due to the availability of effective treatments, with better prognosis (Guilhot et al, 2013). Some patients said they had gained more positive perspectives and felt 'lucky' they had CML rather than a more acute cancer (Bolarinwa et al, 2018;Graffigna et al, 2017;Guilhot et al, 2013;Wu et al, 2015): "There's a lot more people worse off than me so [I] don't complain too much." (Wu et al, 2015, p259) Judging themselves as more fortunate was described as 'downward comparison' and was thought to lead to reluctance among some patients to seek help from HCPs (e.g.…”