Methadone versus other opioids for refractory malignant bone pain: a pilot randomised controlled study.

PURPOSE: Refractory cancer-induced bone pain (CIBP) affects a patient's functional capacity and quality of life, but there is limited evidence to guide opioid choice. We assessed the feasibility, tolerability and possible efficacy of methadone rotation (MR) compared to other opioid rotations (OOR) in this cohort. METHODS: Adults with CIBP and worst pain intensity ≥ 4/10 and/or opioid toxicity graded ≥ 2 on the Common Terminology Criteria for Adverse Events were randomised 1:1 to methadone or another opioid rotation. Standardised assessment tools were used at pre-defined study time points up to 14 days. RESULTS: Of 51 eligible participants, 38 (74.5%) consented, and 29 (76.3%, MR: 14, OOR: 15) completed the fourteen days follow-up post-opioid rotation. Both groups displayed significant reduction in average (MR: d = - 1.2, p = 0.003, OOR: d = - 0.8, p = 0.015) and worst pain (MR: d = - 0.9, p = 0.042, OOR: d = - 0.6, p = 0.048) and total pain interference score (MR: d = - 1.1, p = 0.042, OOR: d = - 0.7, p = 0.007). Oral morphine equivalent daily dose was reduced significantly in MR compared to the OOR group (d = - 0.8, p = 0.05). The incidence of opioid-related adverse events following MR was unchanged but lower in the OOR group (d = 0.9, 95% CI 0.1,1.7, p = 0.022). There were no within-group or between-group differences in satisfaction with analgesia at the end of the study. CONCLUSION: This pilot study demonstrated that MR and OOR in patients with refractory CIBP are feasible, safe and acceptable to patients. Appropriately powered multi-centre randomised controlled studies are needed to confirm the efficacy of MR and OOR in this cohort. TRIAL REGISTRATION: ACTRN12621000141842 registered 11 February 2021.

Does voluntary assisted dying impact quality palliative care? A retrospective mixed-method study.

OBJECTIVES: We aimed to explore the relationship between the pursuit of voluntary assisted dying (VAD) and the delivery of quality palliative care in an Australian state where VAD was newly available METHODS: We adopted a retrospective convergent mixed-methods design to gather and interpret data from records of 141 patients who expressed an interest in and did or did not pursue VAD over 2 years. Findings were correlated against quality domains. RESULTS: The mean patient age was 72.4 years, with the majority male, married/partnered, with a cancer diagnosis and identifying with no religion. One-third had depression, anxiety or such symptoms, half were in the deteriorating phase, two-thirds required help with self-care and 83.7% reported moderate/severe symptoms. Patients sought VAD because of a desire for autonomy (68.1%), actual suffering (57.4%), fear of future suffering (51.1%) and social concerns (22.0%). VAD enquiries impacted multiple quality domains, both enhancing or impeding whole person care, family caregiving and the palliative care team. Open communication promoted adherence to therapeutic options and whole person care and allowed for timely access to palliative care. Patients sought VAD over palliative care as a solution to suffering, with the withholding of information impacting relationships. SIGNIFICANCE OF RESULTS: As legislation is expanded across jurisdictions, palliative care is challenged to accompany patients on their chosen path. Studies are necessary to explore how to ensure the quality of palliative care remains enhanced in those who pursue VAD and support continues for caregivers and staff in their accompaniment of patients.

Meaning and Purpose (MaP) therapy in advanced cancer patients: a randomised controlled trial.

PURPOSE: We aimed to examine the efficacy of Meaning and Purpose (MaP) Therapy in promoting posttraumatic growth and meaningful life attitudes (choices and goal seeking) in people living with advanced cancer. METHODS: Patients with a prognosis ≥ 1 year were stratified across two sites and randomised to receive MaP therapy and regular oncology/palliative care (Intervention) or usual care (Control). They completed measures at baseline (t0), post-intervention (12 weeks, t1) and 12 weeks later (t2). Our primary outcome was posttraumatic growth (PTGI); secondary outcome measures included life attitudes (LAPR), spiritual wellbeing (FACIT-Sp), anxiety, demoralization and depression. TRIAL REGISTRATION NUMBER: ACTRN12618001751268, 7 January 2019. RESULTS: We consented 107 from 404 eligible patients (26.5%) and randomised 55 to MaP Invention (35 completing t1, 25 t2) and 52 to Control (32 completing t1, 25 t2). Fidelity of the intervention was sustained. PTGI mean scores were significantly higher post-intervention on analysis by covariance (Cohen's d = 0.7 at t1 & d = 0.5 at t2). Secondary measures were significant, including LAPR (d = 0.4) and FACIT-Sp (meaning subscale d = 0.4; total d = 0.4). Participants completing six sessions achieved more noteworthy effect sizes. CONCLUSION: This brief, structured individual intervention shows promise for sustaining sense of coherence, meaning and choices in life despite living with advanced cancer.

Validation of the Canadian Version of the Shame and Stigma Scale for Head and Neck Cancer Patients.

Cancers of the head and neck and their treatment can cause disfigurement and loss of functioning, with a profound negative impact on the person's self-image and psychosocial wellbeing. This can lead to experiences of shame and stigma, which are important targets for psychosocial interventions. Accurate measurement and identification of these problems enables clinicians to offer appropriate interventions and monitor patients' progress. This study aimed to validate the Canadian version of the Shame and Stigma Scale (SSS) among French- and English-speaking head and neck cancer patients. Data from 254 patients from two major Canadian hospitals were analysed. The existing four-factor structure of the SSS was supported, with the following subscales: Shame with Appearance, Sense of Stigma, Regret, and Social/Speech Concerns. The Canadian SSS showed adequate convergent and divergent validity and test-retest reliability. Rasch analysis suggested scale improvement by removing two misfitting items and two items with differential functioning between French- and English-speaking patients. The final 16-item scale version was an adequate fit with the Rasch model. The SSS provides more accurate measures for people with high levels of shame and stigma, and thus has utility in identifying patients with more severe symptoms who may be in need of psychosocial interventions.

Real World Experience of Change in Psycho-Existential Symptoms in Palliative Care.

CONTEXT: Psycho-existential symptoms in palliative care are addressed insufficiently. Routine screening, ongoing monitoring and meaningful treatment of psycho-existential symptoms may contribute to the relief of suffering in palliative care. OBJECTIVES: We sought to explore longitudinal change in psycho-existential symptoms following the routine implementation of the Psycho-existential Symptom Assessment Scale (PeSAS) in Australian palliative care services. METHODS: Using a multisite rolling design, we implemented the PeSAS to longitudinally monitor symptoms in a cohort of 319 patients. We assessed change scores for each symptom in groups with mild (≤3), moderate (4-7) and severe (≥8) symptomatology at baseline. We tested significance between these groups and used regression analyses to identify predictors. RESULTS: While one half of patients denied clinically important psycho-existential symptoms, for the remainder, overall, more patients improved than deteriorated. Between 20% and 60% of patients with moderate and severe symptoms improved, while another 5%-25% developed new symptom distress. Patients with severe baseline scores improved significantly more than those with moderate baseline scores. CONCLUSION: As we better recognize through screening patients carrying psycho-existential distress in palliative care programs, there is considerable room for improvement in ameliorating this suffering. Inadequate clinical skills, poor psychosocial staffing or a biomedical program culture may all contribute to inadequate symptom control. Person-centered care necessitates greater attention to authentic multidisciplinary care that ameliorates psycho-spiritual and existential distress.

Demoralization and spirituality in oncology: an integrative systematic review.

OBJECTIVE: To synthesize the scientific findings on demoralization and spirituality in the oncology context. METHODS: This is an integrative systematic review, in line with the PRISMA 2020 guidelines, as proposed by Whittemore and Knalf (2005). The MEDLINE via PubMed, Scopus, Web of Science, APA PsycNet, CINAHL, Cochrane Library, EMBASE, and LILACS databases were searched without limitations regarding language or year of publication. The studies were screened for inclusion according to the predefined eligibility criteria. Data extraction and evidence quality assessment were performed. RESULTS: Out of the 1587 articles evaluated, 10 studies were included in this review. In general, it was found that demoralization tends to increase with the proximity of death and seems to be inversely related to spirituality, with spiritual well-being being a protective factor against demoralization, while the non-fulfillment of spiritual needs is related to increased demoralization in people with cancer. Furthermore, even among caregivers of people with advanced cancer, demoralization seems to be associated, among other factors, with spiritual suffering. These results should be analyzed with caution, considering that the studies included in this review are all observational studies, which prevents establishing cause and effect relationships. CONCLUSIONS: Demoralization tends to increase with growing frailty and the proximity of death in people with cancer, and it seems to be inversely related to spirituality, both in these patients and in their caregivers.

Prevalence and management of chronic nonmalignant pain in palliative care populations: A systematic review.

OBJECTIVES: To investigate the prevalence and current approaches to clinical management of chronic nonmalignant pain in patients referred to palliative care services. METHODS: A systematic review was performed using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and registered with PROSPERO (CRD42021205432). Six databases were searched on 25 August 2020 and again on 11 July 2022: PubMed and Ovid MEDLINE, Elsevier Scopus, PsychINFO, the Cochrane Library, and CINAHL. Search included prevalence or intervention studies with patients who had chronic nonmalignant pain and were referred to palliative care services. Screening was undertaken independently by 2 reviewers. RESULTS: The searches returned 417 titles; subsequent screening identified 5 eligible studies, 4 from the USA and 1 from Hong Kong, including 2 cohort and 3 cross-sectional studies. Sample sizes ranged from 137 to 323, with a total of 1,056 patients. The prevalence of chronic nonmalignant pain ranged from 14% to 34% across different palliative care settings. There was significant crossover of pain types; 54% of patients with chronic no-malignant pain had additional cancer-related pain or cancer treatment-related pain. Opioids were used to manage stand-alone chronic nonmalignant pain for 39% of patients compared to 58% with mixed chronic nonmalignant pain and other pain diagnoses. SIGNIFICANCE OF RESULTS: Five studies have documented the prevalence of chronic nonmalignant pain of 14-34% in palliative care. Further research including prevalence and treatment studies would provide clearer evidence for best practice management of chronic nonmalignant pain in the palliative care setting.

The Edmonton Classification System for Cancer Pain in Patients with Bone Metastasis: a descriptive cohort study.

PURPOSE: We describe the prevalence of the Edmonton Classification System for Cancer Pain (ECS-CP) features in patients with bone metastasis and cancer-induced bone pain (CIBP) and the relationship between ECS-CP features, pain intensity, and opioid consumption. METHODS: We assessed ECS-CP features and recoded pain mechanisms and opioid use in adult patients with bone metastasis. Validated measures were used to assess pain intensity, incident pain, psychological distress, addictive behavior, and cognition. RESULTS: Among 147 eligible patients, 95.2% completed the assessment. Mean participant age was 73.2 years, the majority female (52.1%) with breast cancer occurring most commonly (25.7%). One or more ECS-CP features were present in 96.4% and CIBP in 75.7% of patients. The median average and worst pain scores were 3 and 6, respectively. Neuropathic pain was the most prevalent pain mechanism (45.0%) and was associated with breakthrough pain frequency (p=0.014). Three-quarters had incident pain, which was strongly associated with a higher average and worst pain scores (3.5 and 7, p<0.001 for both), background oral morphine equivalent daily dose (26.7mg, p=0.005), and frequency of daily breakthrough analgesia (1.7 doses/day, p=0.007). Psychological distress (n=90, 64.3%) was associated with a significantly higher average pain score (4, p=0.009) and a slightly higher worst pain score (7, p=0.054). Addictive behaviour and cognitive dysfunction were relatively uncommon (18.6% and 12.9%, respectively). CONCLUSION: There is a need to promote standardized assessment and classification of pain syndromes such as CIBP. The ECS-CP may allow us to consider CIBP in a systematic manner and develop personalized pain interventions appropriate to the pain profile. TRIAL REGISTRATION: Retrospectively registered in ANZCTR ACTRN12622000853741 (16/06/2022).

Unmet spiritual needs in palliative care: psychometrics of a screening checklist.

BACKGROUND: While studies in palliative care use measures of spirituality and religious belief, there have been few validation studies of a screening tool that identifies unmet spiritual needs. METHODS: A multidisciplinary research team developed and examined the usefulness, reliability and validity of a 17-item Spiritual Concerns Checklist (SCC) as a screening tool for unmet spiritual needs. A cohort of patients recruited from three palliative care services in Sydney and Melbourne, Australia completed anonymous questionnaires. Factor structure and item response theory were used to examine its properties; concurrent validity employed the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp-12). RESULTS: Among 261 patients, while only 15% directly sought spiritual care, nearly 62% identified at least one spiritual concern. Existential needs (fear of the dying process 32%; loss of control 31%), regret (20%), need for forgiveness (17%), guilt (13%), loss of hope (13%) and meaning (15%) were prominent concerns. Eleven concerns were present for more than 10% of the participants and 25% of religiously orientated participants expressed >4 concerns. The 17-item SCC was unidimensional, with satisfactory reliability. Concurrent validity was evident in the reduced sense of meaning and peace on the FACIT-Sp-12. CONCLUSION: This preliminary Rasch analysis of the newly developed SCC has demonstrated its usefulness, reliability and validity. Our findings encourage refinement and ongoing development of the SCC with further investigation of its psychometric properties in varying populations.

Dealing with the Vicissitudes and Abject Consequences of Head and Neck Cancer: A Vital Role for Psycho-Oncology.

Patients with head and neck cancer face important life-altering effects in appearance and function, affecting distress and quality of life and requiring the involvement of a multidisciplinary team. Psycho-oncology makes an important contribution to the field, as head and neck cancers carry a huge adaptational toll. To illustrate the value of this discipline, we report two cases of patients with advanced head and neck cancer for which the treatment-related body changes were of major significance. A commentary by the treating surgeons and psycho-oncologists precedes a general discussion about the clinical management of such patients. The article outlines strategies to address health literacy, doctor-patient communication, treatment decision-making, and emotional distress; placing the person at the center of oncological care. It calls for the broad application of principles of psychological first aid by healthcare professionals in oncology.

Vulnerability and Resilience: Phenomenological Analysis of Cancer Patients Value Directives.

CONTEXT: Personal values are individual conceptions of the desirable appraisals and actions that guide our attitudes and behaviour. Advance care planning (ACP) now emphasises the consideration of personal life goals and values expressed as a Values Directive (VD) to guide discussions concerning medical treatment. OBJECTIVE: To investigate the diversity of values, experiences and adaptations expressed in cancer patients VDs. METHODS: Contents of the VDs of ACPs of cancer patients who participated in a randomised control trial comparing a video intervention showing values communication between cancer patient-caregivers with usual care were analysed. Qualitative phenomenological content analysis was used to understand how participants made meaning of their lived experiences. RESULTS: Forty-two participants completed an ACP (37.2% response rate), with 97.6% of these completing a VD (57.1% female, mean age 72 years, 30.1% gastrointestinal cancer). Participants described diverse adjustments to frailty and adaptive coping with deteriorating functionality. Emotional and financial concerns were eased through experiencing benevolence and trust established through family and friendship bonds and reciprocation of care. Death anxiety and ambivalence were expressed concurrently with the experiential acceptance of dying. Secular and sacred rituals featured as an affirmation of their faith or beliefs. CONCLUSION: Cancer patients seek to make meaning of their experiences, concurrently posturing vulnerability and resilience, despite conflicting emotions and experiences. Given that the choices people make as they approach dying relate to their most deeply held values, ACP conversations should explore how patients draw from their values and life goals to optimise their adaptations to illness.

Psycho-Existential Symptom Assessment Scale (PeSAS) Screening in Palliative Care.

CONTEXT: Psycho-existential symptoms are common yet often missed or neglected in palliative care. Screening can be an effective way to recognize and respond to this need. OBJECTIVES: We aimed to implement routine use of the Psycho-existential Symptom Assessment Scale (PeSAS) as a screening tool in Australian palliative care services and discern the symptom prevalence identified. METHODS: In a multi-site rolling design, we established implementation site committees and embarked on experiential workshops to train clinicians in the tool's efficient use. Patient symptom prevalence data were collected to compare uptake across sites. Descriptive statistics were applied. RESULTS: Over one year, we trained 216 clinicians across six palliative care services in the use of the PeSAS as a screening tool and collected data from 1405 patients. Clinicians reported significant growth in their sense of efficacy in assessing psycho-existential wellness. Services using electronic records implemented most easily. Psycho-existential symptoms with clinically significant prevalence (scores ≥ 4/10) included anxiety 41.1%, discouragement 37.6%, hopelessness 35.8%, pointlessness 26.9%, depression 30.3%, and the wish to die 17%. The precision of measurement within 3% was found for severe ratings (score ≥ 8/10) including anxiety 10.6%, depression 10.2%, the wish to die 7.6%, and confusion 3.6%. CONCLUSION: Clinicians can be trained to screen with the Psycho-existential Symptom Assessment Scale, which serves as a valuable measure to better recognize symptoms of psycho-existential distress among palliative care patients. Implementation barriers included the prior ethos of the service, confidence in talking about these themes, electronic data entry, and perceived time pressures.

Patient-caregiver communication concordance in cancer-refinement of the Cancer Communication Assessment Tool in an Australian sample.

PURPOSE: The objective of this study was to expand the international psychometric validation of the Cancer Communication Assessment Tool for Patients and Families (CCAT-PF) within a sample of Australian cancer patients. METHODS: Survey data from 181 cancer patient-caregiver dyads ≥ 18 years of age with solid or haematological cancers were analysed (85.4% response rate). Spearman's rho was used to examine the correlation between CCAT-P and CCAT-F scores and weighted kappa the agreement between them. Exploratory factor analysis using scree plot and Kaiser-Guttman criteria was conducted to evaluate the scale structure. Cronbach's α and Pearson correlation coefficients were used to measure internal consistency and concurrent validity respectively. RESULTS: Mean scores were the following: CCAT-P 46.2 (9.8), CCAT-F 45.7 (9.4), and CCAT-PF 24.1 (8.0). We confirmed the poor concordance between patient and caregiver reporting of items in the CCAT-PF, with all but two items having weighted kappa values < 0.20 and Spearman's rho < 0.19. We derived a three-factor solution, disclosure, limitation of treatment, and treatment decision making, with reliability ranging from Cronbach's α = 0.43-0.53. The CCAT-P and CCAT-F showed strong correlations with preparation for decision-making (CCAT-P: r = 0.0.92; CCATF: r = 0.0.93) but were weakly associated with patient/caregiver distress related with having difficult conversations on future care planning. CONCLUSION: Preliminary validation of the CCAT-PF in the Australian setting has shown some similar psychometric properties to previously published studies, further supporting its potential utility as a tool to assess patient-caregiver dyadic communication. TRIAL REGISTRATION: ACTRN12620001035910 12/10/2020 retrospectively registered.

The flourishing scholarship of psychosocial oncology viewed across 30 years through the lens of this journal, Psycho-Oncology.

OBJECTIVE: This issue celebrates the 30th anniversary of Psycho-Oncology as a journal, a home for scholarship integrating the psychological, social and behavioural dimensions of cancer. Psycho-oncology developed as an evidence-based discipline to offer an alternative to unproven therapies and to optimise coping and support for patients with cancer and their families. METHODS: A review of key articles was undertaken for this editorial. RESULTS: Empirical studies have defined the prevalence of morbidity arising from cancer and the acute, longer-term and late effects of its varied treatments. Interventions have been adapted to respond to existential challenges, death anxiety, fear of recurrence, disease progression, palliative care and have been continued into bereavement. Mixed modality treatments have combined psychotropic and psychotherapeutic interventions. Survivorship studies have examined rehabilitation, fertility, sexuality, body image and relational impacts of illness. CONCLUSION: This journal has helped the discipline to flourish by publishing the innovative outputs of its community of researchers.

Demoralisation and its link with depression, psychological adjustment and suicidality among cancer patients: A network psychometrics approach.

BACKGROUND: Demoralisation is a clinically significant problem among cancer patients with a prevalence of 13%-18%. It is defined by difficulty in adjusting to a stressor, wherein the person feels trapped in their predicament and experiences helplessness, hopelessness, loss of confidence and loss of meaning in life. Demoralisation has a strong link with the desire for hastened death and suicidal ideation among the medically ill. This study explored whether a group of symptoms could be identified, distinct from depression, but consistent with adjustment difficulties with demoralisation and linked to ideation of death and suicide. METHODS: Exploratory Graph Analysis, a network psychometrics technique, was conducted on a large German study of 1529 cancer patients. Demoralisation was measured with the Demoralisation Scale II and depressive symptoms with the PHQ-9. RESULTS: A network of symptoms, with four stable communities, was identified: 1. Loss of hope and meaning; 2. Non-specific emotionality; 3. Entrapment; 4. Depressive symptoms. The first three communities were clearly distinct from the PHQ-9 depressive symptoms, except for suicidality and fear of failure. Community 1, Loss of hope and meaning, had the strongest association with thoughts of death and suicide. Hopelessness, loss of role in life, tiredness, pointlessness and feeling trapped were the most central symptoms in the network. CONCLUSIONS: Communities 1 to 3 are consistent with poor coping without anhedonia and other classic depression symptoms, but linked to suicidal ideation. For people facing the existential threat of cancer, this may indicate poor psychological adjustment to the stressors of their illness.

Patient-caregiver dyads advance care plan value discussions: randomised controlled cancer trial of video decision support tool.

OBJECTIVE: Uptake of advance care planning (ACP) in cancer remains low. An emphasis on personal value discussions and adoption of novel interventions may serve as the catalyst to increase engagement. This study examined the effectiveness of a video decision support tool (VDST) modelling values conversations in cancer ACP. METHODS: This single site, open-label, randomised controlled trial allocated patient-caregiver dyads on a 1:1 ratio to VDST or usual care (UC). Previously used written vignettes were converted to video vignettes using standard methodology. We evaluated ACP document completion rates, understanding and perspectives on ACP, congruence in communication and preparation for decision-making. RESULTS: Participants numbered 113 (60.4% response rate). The VDST did not improve overall ACP document completion (37.7% VDST; 36.7% UC). However, the VDST improved ACP document completion in older patients (≥70) compared with younger counterparts (<70) (OR=0.308, 95% CI 0.096 to 0.982, p=0.047), elicited greater distress in patients (p=0.015) and improved patients and caregivers ratings for opportunities to discuss ACP with health professionals. ACP improved concordance in communication (VDST p=0.006; UC p=0.045), more so with the VDST (effect size: VDST 0.7; UC 0.54). Concordance in communication also improved in both arms with age. CONCLUSION: The VDST failed to improve ACP document completion rates but highlighted that exploring core patient values may improve concordance in patient-caregiver communication. Striving towards a more rigorous design of the VDST intervention, incorporating clinical outcome scenarios with values conversations may be the catalyst needed to progress ACP towards a more fulfilling process for those who partake in it. TRIAL REGISTRATION NUMBER: ACTRN12620001035910.

The role of depression and other psychological factors in work ability among breast cancer survivors in Australia.

OBJECTIVE: Identifying modifiable factors affecting work ability among cancer survivors is important. The primary aim of the present study was to examine the effects of depression and related psychological factors on work ability among breast cancer survivors in Australia. METHODS: In this cross-sectional electronic and postal survey, Australian breast cancer survivors were investigated. Work status and conditions before and after cancer treatment were analysed. Work ability was measured using the Work Limitation Questionnaire©-Short Form (WLQ-SF) with its four domains (time management, physical tasks, mental-interpersonal tasks, and output tasks). Three psychological factors were investigated: depression, fear of cancer recurrence, and demoralisation. Sociodemographic and clinical data were also collected. Multivariate regression analysis was used to identify the associations of psychological factors with WLQ-SF. RESULTS: Among eligible survivors, 310 (50%) responded to the survey and were analysed. Nearly one third reported their work conditions had changed after cancer treatment. The depressed group reported limited work ability in 35%-44% of the four domains of WLQ-SF, while the non-depressed group reported limited work ability in only 8%-13%. At-work productivity loss was approximately fourfold higher in the depressed group than in the non-depressed group. In multivariate analysis, at-work productivity loss was associated with depression, demoralisation, and past history of anxiety. CONCLUSIONS: After breast cancer treatment, work conditions changed toward lower wages and working hours. Depression, demoralisation, and past history of anxiety were associated with lower work ability. Further evaluations of work rehabilitation in breast cancer survivors are warranted.

Mental state of demoralisation across diverse clinical settings: A systematic review, meta-analysis and proposal for its use as a 'specifier' in mental illness.

OBJECTIVE: Demoralisation is a state of poor coping characterised by low morale, hopelessness, subjective incompetence, and loss of meaning and purpose in life. While studied extensively in oncology and palliative care, there has been recent exploration in broader medical and mental health settings. The aim was to investigate the prevalence of demoralisation and associated sociodemographic and psychological factors across these clinical settings. METHOD: Six electronic databases were used to locate articles from January 2014 to March 2020. A pre-publication update of non-oncology populations was completed in September 2021. The review has been reported following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Pooled prevalence of demoralisation was determined through % prevalence and mean demoralisation score; this was synthesised through meta-analysis of single means to determine pooled mean prevalence of Demoralisation Scale scores using the 'R' statistical software. RESULTS: Demoralisation has been examined in 52 studies (n = 11,670) and found to be prevalent in 24-35% of oncology and non-oncology, including mental health, populations. The mean score on the Demoralisation Scale was 24.3 (95% confidence interval, CI = [21.3, 27.3]). There was evidence of divergent validity in addition to significant comorbidity between depression, demoralisation and suicidal ideation. Burdensome physical symptoms, and psychological and demographic factors are strongly correlated with demoralisation. CONCLUSION: There remains a need to recognise demoralisation in various clinical and cultural settings and to strongly consider its inclusion as a 'specifier' within formal nosological systems for adjustment and depressive disorders. This is important to initiate targeted interventions and prevent significant morbidity.

Socio-Economic Deprivation and Symptom Burden in UK Hospice Patients with Advanced Cancer-Findings from a Longitudinal Study.

Socio-economic deprivation is known to impact on cancer diagnosis, treatment and access to services, but little is known of the impact of socio-economic deprivation on symptom burden in patients with advanced cancer. Patients with advanced cancer attending hospice day services were recruited into a 24 week longitudinal study. An area-based index of social deprivation was collected along with depression and symptom burden at baseline, 8, 16 and 24 weeks. Of the 595 patients included, with an age range of 33-89 years and a mean age of 68 years, 67% were female, and 37% were diagnosed with cancer in the last 12 months. Twenty nine percent lived in one of the most deprived 20% of neighbourhoods. Patients living in the most socio-economically deprived areas were significantly likely to report receiving insufficient information regarding their cancer at diagnosis (p = 0.007), greater pain (p = 0.02), moderate to severe depression (p = 0.04) and higher global symptom burden (p = 0.04). This study is the first to report that patients with advanced cancer attending hospice services, living in the most deprived neighbourhoods experience significantly greater symptom burden, notably depression and pain. We recommend using patient outcome measures in order to provide targeted support and thereby reduce the increased symptom burden that socio-economically disadvantaged patients experience at the end of life.

Video decision support tool promoting values conversations in advanced care planning in cancer: protocol of a randomised controlled trial.

BACKGROUND: Views on advance care planning (ACP) has shifted from a focus solely on treatment decisions at the end-of-life and medically orientated advanced directives to encouraging conversations on personal values and life goals, patient-caregiver communication and decision making, and family preparation. This study will evaluate the potential utility of a video decision support tool (VDST) that models values-based ACP discussions between cancer patients and their nominated caregivers to enable patients and families to achieve shared-decisions when completing ACP's. METHODS: This open-label, parallel-arm, phase II randomised control trial will recruit cancer patient-caregiver dyads across a large health network. Previously used written vignettes will be converted to video vignettes using the recommended methodology. Participants will be ≥18 years and be able to complete questionnaires. Dyads will be randomised in a 1:1 ratio to a usual care (UC) or VDST group. The VDST group will watch a video of several patient-caregiver dyads communicating personal values across different cancer trajectory stages and will receive verbal and written ACP information. The UC group will receive verbal and written ACP information. Patient and caregiver data will be collected individually via an anonymous questionnaire developed for the study, pre and post the UC and VDST intervention. Our primary outcome will be ACP completion rates. Secondarily, we will compare patient-caregiver (i) attitudes towards ACP, (ii) congruence in communication, and (iii) preparation for decision-making. CONCLUSION: We need to continue to explore innovative ways to engage cancer patients in ACP. This study will be the first VDST study to attempt to integrate values-based conversations into an ACP intervention. This pilot study's findings will assist with further refinement of the VDST and planning for a future multisite study. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry No: ACTRN12620001035910 . Registered 12 October 2020. Retrospectively registered.