Incurable, invisible and inconclusive: watchful waiting for chronic lymphocytic leukaemia and implications for doctor-patient communication

Abstract

Patients with chronic lymphocytic leukaemia (CLL) find it hard to accept a diagnosis of an incurable cancer for which no treatment is recommended and which may not cause symptoms for many years. We used qualitative interviews with 12 people with CLL managed by watchful waiting, drawn from a maximum variation sample of 39 adults with leukaemia, to explore accounts of watchful waiting and implications for clinical management. Patients with CLL recalled being given little information about the condition and wanted to know more about how it might affect them in the future. The invisibility of CLL meant that some chose not to disclose the diagnosis to others. Check-ups sometimes felt cursory, causing dissatisfaction. As symptoms increased, lifestyle adaptations became essential, well before treatment was warranted. Patients with CLL on watchful waiting experience levels of depression, anxiety and quality of life similar to those in active treatment; our qualitative approach has illuminated some of the reasons for the negative psychological impacts. We relate our findings to perceptions of the illness state, doctor-patient communication, and work pressure. We recommend that specialists could better support patients by acknowledging psychological impacts of CLL, actively listening to patients' concerns, and meeting their needs for information.

Surgical nurses’ attitudes towards caring for patients dying of cancer - a pilot study of an educational intervention on existential issues

“…There are many studies on how to improve communication by, for example, enhancing the professional's awareness of and attentiveness to what the patient expresses (Wilkinson et al 2003;Uitterhoeve et al 2009;Lenzi et al 2011;Evans et al 2012;Udo et al 2013). Reflection may be a useful strategy in developing both personal and professional awareness and enhancing understanding (Maggs & Biley 2000;Thorpe & Barsky 2001;Gustafsson & Fagerberg 2004).…”

Are Australian clinicians monitoring medication adherence in hematological cancer survivors? Two cross-sectional studies

“…As a significant proportion of participants had been diagnosed more than two years prior to the survey, it is likely that some may have completed treatment and/or were in the ‘watchful waiting’ stage of survivorship [19]. …”

Cancer Survivorship and Models of Survivorship Care

“…One group reported on 12 patients with CLL on watchful waiting that many "experience levels of depression, anxiety, and quality of life similar to those in active treatment; our qualitative approach has illuminated some of the reasons for the negative psychological impacts." 27 In a larger sample of over 400 survivors with CLL who were untreated, the investigators reported that compared with a normal population that "the greatest differences were in fatigue, sleep disturbance, role functioning, and global HRQoL." 28 Fatigue was reported by 81% of patients, compared with the next most common symptoms: sleep disturbance (56%) and dyspnea (49%).…”