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

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.

Evans J ，Ziebland S ，Pettitt AR 《-》

The experience of adults who choose watchful waiting or active surveillance as an approach to medical treatment: a qualitative systematic review.

Rittenmeyer L ，Huffman D ，Alagna M ，Moore E ... -  《-》

Illness Perceptions in Chronic Lymphocytic Leukemia: Testing Leventhal's Self-regulatory Model.

Leventhal's Self-regulatory Model proposes that somatic characteristics of a health threat (e.g., symptom severity), and prior experience with the threat (e.g., unsuccessful treatment), are determinants of illness perceptions. Chronic lymphocytic leukemia (CLL) is appropriate for test of these postulates, having three phases differing in symptom severity and prior treatment experiences: indolent disease requiring no treatment (active surveillance; AS), symptomatic disease requiring a first treatment (FT), and highly symptomatic disease in those who have relapsed and/or failed to respond to prior treatments (relapsed/refractory; RR). To test symptom severity and prior treatment experiences as determinants of illness perceptions, illness perceptions were characterized and contrasted between CLL groups. Three hundred and thirty CLL patients (AS, n = 100; FT, n = 78; RR, n = 152) provided illness perception data on one occasion during a surveillance visit (AS) or prior to beginning treatment (FT, RR). Analysis of variance with planned comparisons revealed that consequences, identity, and concern were least favorable among RR patients, followed by FT, then AS (ps < .01). AS patients endorsed the lowest levels of coherence (ps < .01), and the most chronic illness timeline (ps < .01). FT patients endorsed the highest levels of personal and treatment control (ps < .01). Data provide preliminary empirical support for Self-regulatory Model postulates that symptom severity and prior disease experiences influence illness perceptions. Unique knowledge needs for AS patients and elevated psychological/physical symptoms for later-stage CLL patients may warrant clinical attention.

Westbrook TD ，Morrison EJ ，Maddocks KJ ，Awan FT ，Jones JA ，Woyach JA ，Johnson AJ ，Byrd JC ，Andersen BL ... -  《-》

The physician-patient relationship and quality of life: lessons from chronic lymphocytic leukemia.

Shanafelt TD ，Bowen DA ，Venkat C ，Slager SL ，Zent CS ，Kay NE ，Reinalda M ，Tun H ，Sloan JA ，Call TG ... -  《-》

Illness representations and psychological outcomes in chronic lymphocytic leukaemia.

Arrato NA ，Valentine TR ，Byrd JC ，Jones JA ，Maddocks KJ ，Woyach JA ，Andersen BL ... -  《-》