Assessment and Management of Sleep Disturbance in Palliative Care Settings.

Background: Sleep disturbances, including insomnia, sleep-disordered breathing, and circadian rhythm disorders with potential consequences including excessive daytime somnolence and worsening fatigue, are prevalent yet largely under-measured and therefore under-managed problems in people receiving palliative care. This has the potential to negatively affect the person's functioning and quality of life. Objectives: We aimed to review the current practice of assessment and management of sleep disturbances in people with life-limiting illnesses in Australian and New Zealand palliative care settings, and to define areas for improvement in assessment and management of sleep disturbances and further research. Design: A cross-sectional, online survey was conducted with palliative care health professionals (PCHPs) to explore current approaches to routine assessment of sleep disturbances and PCHPs' awareness of, and perceived access to, evidence-based resources for assessing and managing sleep disturbances in their local settings. Results: Fifty-four PCHPs responded to the survey, including allied health professionals (44%), palliative care nurses (26%), and physicians (19%). Over 70% of PCHPs endorsed routine verbal screening of sleep symptoms, and >90% recommended management with basic behavioral strategies. However, none of PCHPs used validated patient-reported outcome measures for sleep, and <10% of PCHPs demonstrated awareness or use of sleep-specific interventions (including medications). Only 40% reported they had access to sleep specialist services for patients. Conclusion: Our findings provide a useful snapshot of current approaches to managing sleep disturbances in palliative care. Gaps in current practice are highlighted, including the lack of structured, clinical assessment, referral pathways, and PCHPs' perceived lack of access to targeted interventions for sleep disturbances.

Understanding sleep disturbance in the context of malignant brain tumors: a qualitative analysis.

BACKGROUND: Sleep is an important element in health-related quality of life of cancer patients and caregivers. This study aimed to explore the experience of sleep disturbance in people with malignant brain tumors (BT) and their family caregivers. METHODS: Participants were recruited from ambulatory neuro-oncology clinics. Semi-structured interviews were conducted with 24 patients (67% with high-grade gliomas) and 14 caregivers. Data were analyzed thematically using a framework synthesis. RESULTS: We identified six themes relating to perceptions of the nature, impact, causal factors, and interventions for sleep disturbance, beliefs about sleep and impact, and personal coping strategies. Participants described their sleep disturbance in terms of insomnia symptoms; most commonly difficulties initiating and maintaining sleep. Participants had varied views on causal factors including the BT diagnosis and treatment and caregiver burden. However, excessive thinking and BT-related anxiety were evident in both patients and caregivers. The described impact on daytime functioning due to non-restful sleep and fatigue appeared to be significant and many participants needed daytime naps, although they understated the impact on individual functioning. Some participants were reluctant to seek help from clinicians for sleep disturbance due to previous experiences where sleep disturbance was overlooked, or because they held negative views toward pharmacological interventions. Participants reported various coping strategies, ranging from relaxation-promoting techniques to behaviors to distract thinking at night that may instead disturb sleep. CONCLUSIONS: Psychological factors contribute to sleep disturbance in patients with BT and caregivers. This population may benefit from information about sleep disturbance and interventions targeting anxiety.

Exploring sleep disturbance among adults with primary or secondary malignant brain tumors and their caregivers.

BACKGROUND: Emerging evidence supports the clinical impact of sleep disturbance (SD) on cancer patients. This study aimed to determine the prevalence and predictors of SD in people with malignant brain tumors and caregivers, and explore any relationship between the patient-caregiver dyad's sleep. METHODS: Eighty-one adults with primary malignant (91%) or metastatic (9%) brain tumors and their family caregivers (n = 44) completed a series of self-report questionnaires, including the Pittsburgh Sleep Quality Index (PSQI), the Insomnia Severity Index, and the drowsiness item of The MD Anderson Symptom Inventory-Brain Tumor in an Australian ambulatory neuro-oncology setting. Participants were grouped by the PSQI cutoff (SD > 5), and binary logistic regression analyses were performed to identify risk factors. RESULTS: Of patients, 53% reported SD and 15% of those clinically significant insomnia, and 27% reported moderate to severe daytime drowsiness. Whereas anxiety, depression, fatigue, pain, neurocognitive symptoms, and antiemetic use were higher in patients with SD, fatigue and KPS were strong predictors of SD. In caregivers, 55% reported poor sleep and 13% clinical insomnia. Anxiety, caregiver burden, and comorbid illness were significantly associated with caregivers' SD. The individual's SD did not affect the chance of the other member of the patient-caregiver dyad experiencing SD. CONCLUSIONS: More than half the sample had sleep disturbance, which was linked to many concomitant symptoms, such as fatigue in patients and anxiety in caregivers, potentially contributing to distress and functional impairment. Understanding underlying mechanisms of SD, the potential use of these clinical predictors in care settings, and options for management is warranted.

Barriers to managing sleep disturbance in people with malignant brain tumours and their caregivers: a qualitative analysis of healthcare professionals' perception.

PURPOSE: This study explores healthcare professionals (HCPs)' perception and current management of sleep disturbance (SD) in people with malignant brain tumours and their caregivers. We aimed to identify barriers to effective management of SD in neuro-oncology care. METHODS: We conducted semi-structured interviews with 11 HCPs involved in neuro-oncology care. The study was underpinned by the Capability Opportunity Motivation-Behaviour (COM-B) model within the Behavioural Change Wheel (BCW) guiding topic selection for the exploration of underlying processes of HCPs' behaviours and care decisions for SD management. Data were analysed thematically using a framework synthesis, and subsequently mapped onto the BCW to identify barriers for effective management and recommend potential interventions. RESULTS: We identified four themes: HCPs' clinical opinions about SD, the current practice of SD management in neuro-oncology clinics, gaps in the current practice, and suggested areas for improvements. HCPs perceived SD as a prevalent yet secondary issue of low priority in neuro-oncology care. SD was unrecognised, and inadequately managed in usual clinical settings. Interventional options included modifying the use of corticosteroids or prescribing sedatives. When mapped onto the BCW, themes identified main barriers as a lack of awareness among HCPs about SD warranting care, due to the absence of screening tools and limited knowledge and resources for therapeutic interventions. CONCLUSIONS: Multidisciplinary HCPs need training in the routine use of appropriate sleep assessment tools, and access to clear management pathways. More professional resources are needed to educate staff in implementing appropriate interventions for people with malignant brain tumours who are experiencing SD.

Sleep disturbance in people with brain tumours and caregivers: a survey of healthcare professionals' views and current practice.

PURPOSE: Sleep disturbance is easily overlooked in subspecialty consultations and may remain untreated during and after initial treatment of malignant brain tumours (BT). This study aimed to explore perceptions of healthcare professionals (HCPs) actively engaged in neuro-oncology care towards sleep disturbance in adults with primary or secondary BT and to identify facilitators and barriers to assessment and management of sleep disturbance. METHODS: A survey was conducted to explore HCPs' perceptions about their knowledge, skills, and confidence in managing sleep disturbance in people with BT. The survey also explored their beliefs, motivation, and perceived role in managing sleep disturbance, and views on contributing external factors that impacted management. RESULTS: Seventy-three interdisciplinary HCPs with average of 9.3 years of clinical experience in neuro-oncology participated. Fifty-five percent of participants were medical or radiation oncologists. Participants reported a high observed prevalence of sleep disturbance, especially in inpatient settings, during initial treatment, and after tumour progression or recurrence. Only 20% of participants reported routinely reviewing sleep-related symptoms during consultations. General symptom screening questions were perceived as helpful to identify sleep disturbance. Almost all respondents (92%) viewed corticosteroids as the most relevant risk factor, followed by psychological distress. The most frequent clinical responses were offering verbal advice and prescribing medication. The lack of time, resources, and training for managing sleep issues were commonly reported barriers. CONCLUSIONS: Overall, participants perceived sleep disturbance as highly prevalent in neuro-oncology and positively viewed the importance of managing this symptom. Practical barriers to management were reported that future interventions can target.

Prevalence and severity of sleep difficulty in patients with a CNS cancer receiving palliative care in Australia.

BACKGROUND: The literature describing the incidence of sleep difficulty in CNS cancers is very limited, with exploration of a sleep difficulty symptom trajectory particularly sparse in people with advanced disease. We aimed to establish the prevalence and longitudinal trajectory of sleep difficulty in populations with CNS cancers receiving palliative care nationally, and to identify clinically modifiable predictors of sleep difficulty. METHODS: A consecutive cohort of 2406 patients with CNS cancers receiving palliative care from sites participating in the Australian national Palliative Care Outcomes Collaboration were evaluated longitudinally on patient-reported sleep difficulty from point-of-care data collection, comorbid symptoms, and clinician-rated problems. Multilevel models were used to analyze patient-reported sleep difficulty. RESULTS: Reporting of mild to severe sleep difficulties ranged from 10% to 43%. Sleep scores fluctuated greatly over the course of palliative care. While improvement in patients' clinical status was associated with less sleep difficulty, the relationship was not clear when patients deteriorated. Worsening of sleep difficulty was associated with higher psychological distress (P < .0001), greater breathing problems (P < .05) and pain (P < .05), and higher functional status (P < .001) at the beginning of care. CONCLUSIONS: Sleep difficulty is prevalent but fluctuates widely in patients with CNS cancers receiving palliative care. A better-tailored sleep symptom assessment may be needed for this patient population. Early interventions targeting psychological distress, breathing symptoms, and pain for more functional patients should be explored to see whether it reduces sleep difficulties late in life.