Posttraumatic growth in palliative care settings: A scoping review of prevalence, characteristics and interventions.

BACKGROUND: Posttraumatic growth refers to positive psychological change following trauma. However, there is a need to better understand the experience of posttraumatic growth in the palliative care setting as well as the availability and efficacy of interventions that target this phenomenon. AIMS: To provide a review of the prevalence, characteristics and interventions involving posttraumatic growth in adults receiving palliative care and to collate recommendations for future development and utilisation of interventions promoting posttraumatic growth. DESIGN: We performed a systematic scoping review of studies investigating posttraumatic growth in palliative care settings using the Arksey and O'Malley six-step scoping review criteria. We used the PRISMA guidelines for scoping reviews. DATA SOURCES: Articles in all languages available on Ovid Medline [1946-2022], Embase [1947-2022], APA PsycINFO [1947-2022] and CINAHL [1981-2022] in November 2022. RESULTS: Of 2167 articles located, 17 were included for review. These reported that most people report low to moderate levels of posttraumatic growth with a decline towards end-of-life as distress and symptom burden increase. Associations include a relationship between posttraumatic growth, acceptance and greater quality-of-life. A limited number of interventions have been evaluated and found to foster posttraumatic growth and promote significant psychological growth. CONCLUSION: Posttraumatic growth is an emerging concept in palliative care where although the number of studies is small, early indications suggest that interventions fostering posttraumatic growth may contribute to improvements in psychological wellbeing in people receiving palliative care.

Factors influencing fidelity to guideline implementation strategies for improving pain care at cancer centres: a qualitative sub-study of the Stop Cancer PAIN Trial.

BACKGROUND: The Stop Cancer PAIN Trial was a phase III pragmatic stepped wedge cluster randomised controlled trial which compared effectiveness of screening and guidelines with or without implementation strategies for improving pain in adults with cancer attending six Australian outpatient comprehensive cancer centres (n = 688). A system for pain screening was introduced before observation of a 'control' phase. Implementation strategies introduced in the 'intervention' phase included: (1) audit of adherence to guideline recommendations, with feedback to clinical teams; (2) health professional education via an email-administered 'spaced education' module; and (3) a patient education booklet and self-management resource. Selection of strategies was informed by the Capability, Opportunity and Motivation Behaviour (COM-B) Model (Michie et al., 2011) and evidence for each strategy's stand-alone effectiveness. A consultant physician at each centre supported the intervention as a 'clinical champion'. However, fidelity to the intervention was limited, and the Trial did not demonstrate effectiveness. This paper reports a sub-study of the Trial which aimed to identify factors inhibiting or enabling fidelity to inform future guideline implementation initiatives. METHODS: The qualitative sub-study enabled in-depth exploration of factors from the perspectives of personnel at each centre. Clinical champions, clinicians and clinic receptionists were invited to participate in semi-structured interviews. Analysis used a framework method and a largely deductive approach based on the COM-B Model. RESULTS: Twenty-four people participated, including 15 physicians, 8 nurses and 1 clinic receptionist. Coding against the COM-B Model identified 'capability' to be the most influential component, with 'opportunity' and 'motivation' playing largely subsidiary roles. Findings suggest that fidelity could have been improved by: considering the readiness for change of each clinical setting; better articulating the intervention's value proposition; defining clinician roles and responsibilities, addressing perceptions that pain care falls beyond oncology clinicians' scopes of practice; integrating the intervention within existing systems and processes; promoting patient-clinician partnerships; investing in clinical champions among senior nursing and junior medical personnel, supported by medical leaders; and planning for slow incremental change rather than rapid uptake. CONCLUSIONS: Future guideline implementation interventions may require a 'meta-implementation' approach based on complex systems theory to successfully integrate multiple strategies. TRIAL REGISTRATION: Registry: Australian New Zealand Clinical Trials Registry; number: ACTRN 12615000064505; data: https://www.anzctr.org.au/Trial/Registration/TrialReview.aspxid=367236&isReview=true .

Cultural factors affecting Chinese migrants' perceptions and responses to cancer pain and its pharmacological management: A convergent mixed-method study.

INTRODUCTION: Studies identified barriers of pain reporting and use of analgesics impeding Chinese cancer patients to achieve optimal pain relief. No research has yet explored these issues in Chinese migrants, where cultural differences may exacerbate the barriers. OBJECTIVES: To explore cultural factors influencing Chinese migrants' perspectives to cancer pain and its pharmacological management. METHOD: Informed by Leininger's Cultural Care Theory, focus groups and a short version of Barrier Questionnaire-Taiwan (S-BQT) were conducted in Mandarin or Cantonese, with 24 Chinese migrants receiving ambulatory cancer and/or palliative care services in Sydney, Australia. Integrated thematic analysis, descriptive statistics, and meta-inference were adopted for data analysis and integration. RESULTS: Participants suffered uncontrolled cancer pain negatively affecting their physical and psychosocial well-being. Most experienced moderate to severe pain, but only a third used opioids. Most adopted non-pharmacological approaches and half used Traditional Chinese Medicine. Participants scored a mean S-BQT of 3.28 (standard deviation ± 0.89). Three themes and seven sub-themes contributed to higher barriers of pharmacological pain management: (1) Philosophical health beliefs (cancer pain are self-provoked and body can self-heal); (2) Cultural values and beliefs (cancer pain is inevitable, and Chinese people express pain differently to local people); and (3) Conflicting views on the use of opioids (culture-related negative medication beliefs, Western biomedical model-related opioid fears, and opioids extend life for people with terminal cancer pain). CONCLUSIONS: Chinese migrants' responses to cancer pain and attitudes towards opioids are complex. Culturally congruent strategies are needed to overcome culture-related barriers and improve quality of cancer pain care in this population.

Feasibility and acceptability of virtual reality for cancer pain in people receiving palliative care: a randomised cross-over study.

CONTEXT: Pain management in palliative care remains inadequate; the development of innovative therapeutic options is needed. OBJECTIVES: To determine the feasibility and preliminary effectiveness for larger randomised controlled trials of 3D head-mounted (HMD) virtual reality (VR) for managing cancer pain (CP) in adults. METHODS: Thirteen people receiving palliative care participated in a single-session randomised cross-over trial, after which they completed a qualitative semi-structured interview. We also compared the effects of 3D HMD VR and 2D screen applications on CP intensity and levels of perceived presence. Feasibility was assessed with recruitment, completion rates and time required to recruit target sample. RESULTS: Although recruitment was slow, completion rate was high (93%). Participants reported that the intervention was acceptable and caused few side effects. Although participants reported significantly reduced CP intensity after 3D HMD VR (1.9 ± 1.8, P = .003) and 2D screen applications (1.5 ± 1.6, P = .007), no significant differences were found between interventions (-.38 ± 1.2, 95% CI: -1.1-.29, P = .23). Participants reported significantly higher levels of presence with the 3D HMD VR compared to 2D screen (60.7 ± SD 12.4 versus 34.3 ± SD 17.1, mean 95% CI: 16.4-40.7, P = .001). Increased presence was associated with significantly lower pain intensity (mean 95% CI: -.04--0.01, P = 0.02). CONCLUSIONS: Our preliminary findings support growing evidence that both 3D and 2D virtual applications provide pain relief for people receiving palliative care. Given the relative lack of cybersickness and increasing access to portable VR, we suggest that larger clinical studies are warranted.

A systematic review of assessment approaches to predict opioid misuse in people with cancer.

CONTEXT: Cancer prevalence is increasing, with many patients requiring opioid analgesia. Clinicians need to ensure patients receive adequate pain relief. However, opioid misuse is widespread, and cancer patients are at risk. OBJECTIVES: This study aims (1) to identify screening approaches that have been used to assess and monitor risk of opioid misuse in patients with cancer; (2) to compare the prevalence of risk estimated by each of these screening approaches; and (3) to compare risk factors among demographic and clinical variables associated with a positive screen on each of the approaches. METHODS: Medline, Cochrane Controlled Trial Register, PubMed, PsycINFO, and Embase databases were searched for articles reporting opioid misuse screening in cancer patients, along with handsearching the reference list of included articles. Bias was assessed using tools from the Joanna Briggs Suite. RESULTS: Eighteen studies met the eligibility criteria, evaluating seven approaches: Urine Drug Test (UDT) (n = 8); the Screener and Opioid Assessment for Patients with Pain (SOAPP) and two variants, Revised and Short Form (n = 6); the Cut-down, Annoyed, Guilty, Eye-opener (CAGE) tool and one variant, Adapted to Include Drugs (n = 6); the Opioid Risk Tool (ORT) (n = 4); Prescription Monitoring Program (PMP) (n = 3); the Screen for Opioid-Associated Aberrant Behavior Risk (SOABR) (n = 1); and structured/specialist interviews (n = 1). Eight studies compared two or more approaches. The rates of risk of opioid misuse in the studied populations ranged from 6 to 65%, acknowledging that estimates are likely to have varied partly because of how specific to opioids the screening approaches were and whether a single or multi-step approach was used. UDT prompted by an intervention or observation of aberrant opioid behaviors (AOB) were conclusive of actual opioid misuse found to be 6.5-24%. Younger age, found in 8/10 studies; personal or family history of anxiety or other mental ill health, found in 6/8 studies; and history of illicit drug use, found in 4/6 studies, showed an increased risk of misuse. CONCLUSIONS: Younger age, personal or familial mental health history, and history of illicit drug use consistently showed an increased risk of opioid misuse. Clinical suspicion of opioid misuse may be raised by data from PMP or any of the standardized list of AOBs. Clinicians may use SOAPP-R, CAGE-AID, or ORT to screen for increased risk and may use UDT to confirm suspicion of opioid misuse or monitor adherence. More research into this important area is required. SIGNIFICANCE OF RESULTS: This systematic review summarized the literature on the use of opioid misuse risk approaches in people with cancer. The rates of reported risk range from 6 to 65%; however, true rate may be closer to 6.5-24%. Younger age, personal or familial mental health history, and history of illicit drug use consistently showed an increased risk of opioid misuse. Clinicians may choose from several approaches. Limited data are available on feasibility and patient experience. PROSPERO registration number. CRD42020163385.

Stakeholder perspectives of a pilot multicomponent delirium prevention intervention for adult patients with advanced cancer in palliative care units: A behaviour change theory-based qualitative study.

BACKGROUND: Theory-based and qualitative evaluations in pilot trials of complex clinical interventions help to understand quantitative results, as well as inform the feasibility and design of subsequent effectiveness and implementation trials. AIM: To explore patient, family, clinician and volunteer ('stakeholder') perspectives of the feasibility and acceptability of a multicomponent non-pharmacological delirium prevention intervention for adult patients with advanced cancer in four Australian palliative care units that participated in a phase II trial, the 'PRESERVE pilot study'. DESIGN: A trial-embedded qualitative study via semi-structured interviews and directed content analysis using Michie's Behaviour Change Wheel and the Theoretical Domains Framework. SETTING/PARTICIPANTS: Thirty-nine people involved in the trial: nurses (n = 17), physicians (n = 6), patients (n = 6), family caregivers (n = 4), physiotherapists (n = 3), a social worker, a pastoral care worker and a volunteer. RESULTS: Participants' perspectives aligned with the 'capability', 'opportunity' and 'motivation' domains of the applied frameworks. Of seven themes, three were around the alignment of the delirium prevention intervention with palliative care (intervention was considered routine care; intervention aligned with the compassionate and collaborative culture of palliative care; and differing views of palliative care priorities influenced perspectives of the intervention) and four were about study processes more directly related to adherence to the intervention (shared knowledge increased engagement with the intervention; impact of the intervention checklist on attention, delivery and documentation of the delirium prevention strategies; clinical roles and responsibilities; and addressing environmental barriers to delirium prevention). CONCLUSION: This theory-informed qualitative study identified multiple influences on the delivery and documentation of a pilot multicomponent non-pharmacological delirium prevention intervention in four palliative care units. Findings inform future definitive studies of delirium prevention in palliative care.Australian New Zealand Clinical Trials Registry, ACTRN12617001070325; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=373168.

Patient and carer experiences of pain care in an Australian regional comprehensive cancer care setting: a qualitative study.

INTRODUCTION: Pain is a common and distressing symptom in people living with cancer that requires a patient-centred approach to management. Since 2010, the Australian Government has invested heavily in developing regional cancer centres to improve cancer outcomes. This study explored patient and carer experiences of care from a regional cancer centre with specific reference to cancer pain management. METHODS: A qualitative approach was used with semi-structured telephone interviews. Participants were outpatients at a regional cancer centre in New South Wales who had reported worst pain of 2 or more on a 0-10 numerical rating scale, and their carers. Questions explored experiences of pain assessment and management, and perceptions of how these were affected by the regional setting. Researchers analysed data using a deductive approach, using Mead and Bower's (2000) framework of factors influencing patient-centred care. RESULTS: Eighteen telephone interviews were conducted with 13 patients and 5 carers. Participants perceived that living in a regional setting conferred advantages to the patient-centredness of care via influences at the levels of professional context, the doctor-patient relationship, and consultation. These influences included established and ongoing relationships with a smaller number of care providers who were members of the community, and heightened accessibility in terms of travel/parking, flexible appointments, and ample time spent with each patient. The first of these factors was also perceived to contribute to continuity of care between specialist and primary care providers. However, one negative case reported disagreement between providers and a difficulty accessing specialist pain services. Several participants also reported a preference, and unmet need, for non-pharmacological rather than pharmacological pain management. CONCLUSION: While much research has focused on lack of services and poorer outcomes for people with cancer in rural areas, the Australian regional setting may offer benefits to the patient-centredness of cancer pain management and continuity of care. More research is needed to better understand the benefits and trade-offs of cancer care in regional versus urban settings, and how each can learn from the other. An unmet need for non-pharmacological rather than pharmacological pain management is among the most consistent findings of qualitative studies of patient/carer preferences across settings.

Perspectives of Major World Religions regarding Euthanasia and Assisted Suicide: A Comparative Analysis.

Euthanasia and physician-assisted suicide (EPAS) are important contemporary societal issues and religious faiths offer valuable insights into any discussion on this topic. This paper explores perspectives on EPAS of the four major world religions, Christianity, Islam, Hinduism and Buddhism, through analysis of their primary texts. A literature search of the American Theological Library Association database revealed 41 relevant secondary texts from which pertinent primary texts were extracted and exegeted. These texts demonstrate an opposition to EPAS based on themes common to all four religions: an external locus of morality and the personal hope for a better future after death that transcends current suffering. Given that these religions play a significant role in the lives of billions of adherents worldwide, it is important that lawmakers consider these views along with conscientious objection in jurisdictions where legal EPAS occurs. This will not only allow healthcare professionals and institutions opposed to EPAS to avoid engagement, but also provide options for members of the public who prefer an EPAS-free treatment environment.

Spiritual Well-Being in People Living with Persistent Non-Cancer and Cancer-Related Pain.

CONTEXT: Existential and spiritual factors are known to play an important role in how people cope with disability and life-threatening illnesses such as cancer. However, comparatively little is known about the impact of pain on factors such as meaning and purpose in one's life and their potential roles in coping with pain. OBJECTIVES: The aim of this study was to determine spiritual well-being scores in people with persistent pain and to compare these with people with cancer and healthy controls. METHODS: We assessed 132 people with chronic pain, 74 people with cancer (49 with pain and 25 without pain) and 68 control participants using standardised measures of pain-related variables including pain intensity, physical function, mood and cognitions. Spiritual well-being was also assessed using a validated and widely used questionnaire, the Functional Assessment of Chronic Illness Therapy - Spirituality Scale (FACIT-Sp). RESULTS: Spiritual well-being scores were significantly lower in people with persistent pain when compared with controls and were no different when compared with people with cancer, including those who had cancer and pain. In addition, low levels of meaning and purpose were significant predictors of depression, anxiety, and stress across all groups. CONCLUSION: The findings demonstrate that persistent pain is associated with spiritual distress that is equal to those observed in people who have cancer. Furthermore, those who have higher levels of meaning and purpose are less likely to develop mood dysfunction when experiencing pain, indicating they may have a protective role.

Content analysis of euthanasia polls in Australia and New Zealand: words do matter.

BACKGROUND: There has been widespread public and political interest in Euthanasia and Physician-Assisted Suicide (EPAS) in recent years. Polling in Australia and New Zealand has generally shown a majority of people support some form of legal EPAS; however, the level of support varies between polls. AIM: To explore whether public support for and opposition to EPAS as measured in historic Australian and New Zealand polls has been influenced by the wording of survey questions. METHODS: Australian and New Zealand random-sample post-1995 EPAS poll questions asked of the general public were identified and subjected to content analysis. Individual phrases and words were considered in terms of their favourability towards or unfavourability against EPAS and each poll question was assigned a net favourability score. Variation of support for EPAS based on year, location and favourability of language was analysed by various statistical methods. RESULTS: Mean public support for EPAS in Australia and New Zealand between 1995 and the present was 70.2% with support ranging between 47 and 85%. Support did not vary by location and has remained unchanged over time. However, support was positively associated with increasing levels of favourable wording, accounting for over 20% variation in mean support. Allusions to hopelessness had an especially strong effect on increasing support for EPAS. CONCLUSION: Use of emotive phrases and language is associated with influencing attitudes to EPAS in Australia and New Zealand. Therefore, caution should be exercised when interpreting public support for EPAS based on individual polls.

Screening and Audit as Service-Level Strategies to Support Implementation of Australian Guidelines for Cancer Pain Management in Adults: A Feasibility Study.

BACKGROUND: Pain in people with cancer is common but often under-recognized and under-treated. Guidelines can improve the quality of pain care, but need targeted strategies to support implementation. AIM: To test the feasibility of two service-level strategies for supporting guideline implementation: a screening system and medical record audit. DESIGN: Multimethods. SETTING: One oncology outpatient service, and one palliative care outpatient and inpatient service. PARTICIPANTS: Patients with advanced cancer. METHODS: Patients were screened in the waiting room with a modified version of the Edmonton Symptom Assessment System-revised either electronically or in paper-based format. Feasibility indicated the percentage of patients successfully screened from the total number attending the services. An audit assessed adherence to key indicators of pain assessment and management. Feasibility thresholds were set at 75% incidence for screening and a median of 30 minutes per patient for audit. RESULTS: Of 452 patient visits, 95% (n = 429) were successfully screened, 34% (n = 155) electronically and 61% (n = 274) paper-based. Electronic pain screening was technically challenging and time-intensive for nurses. Thirty-one patients consented to have their records audited. The median audit time was 37.5 minutes (range 10-120 minutes). Variability arose from the number and type of record (outpatient or inpatient). Adherence to indicators varied from 63% (pain assessment at first presentation) to 94% (regular pain assessment and medication prescribed at regular intervals). CONCLUSIONS: This study confirmed the need to implement evidence-based guidelines for cancer pain and generated useful insights into the feasibility of pain screening and audit.

Development of a cancer pain self-management resource to address patient, provider, and health system barriers to care.

OBJECTIVE: The majority of self-management interventions are designed with a narrow focus on patient skills and fail to consider their potential as "catalysts" for improving care delivery. A project was undertaken to develop a patient self-management resource to support evidence-based, person-centered care for cancer pain and overcome barriers at the levels of the patient, provider, and health system. METHOD: The project used a mixed-method design with concurrent triangulation, including the following: a national online survey of current practice; two systematic reviews of cancer pain needs and education; a desktop review of online patient pain diaries and other related resources; consultation with stakeholders; and interviews with patients regarding acceptability and usefulness of a draft resource. RESULT: Findings suggested that an optimal self-management resource should encourage pain reporting, build patients' sense of control, and support communication with providers and coordination between services. Each of these characteristics was identified as important in overcoming established barriers to cancer pain care. A pain self-management resource was developed to include: (1) a template for setting specific, measureable, achievable, relevant and time-bound goals of care, as well as identifying potential obstacles and ways to overcome these; and (2) a pain management plan detailing exacerbating and alleviating factors, current strategies for management, and contacts for support. SIGNIFICANCE OF RESULTS: Self-management resources have the potential for addressing barriers not only at the patient level, but also at provider and health system levels. A cluster randomized controlled trial is under way to test effectiveness of the resource designed in this project in combination with pain screening, audit and feedback, and provider education. More research of this kind is needed to understand how interventions at different levels can be optimally combined to overcome barriers and improve care.

Comparison of implementation strategies to influence adherence to the clinical pathway for screening, assessment and management of anxiety and depression in adult cancer patients (ADAPT CP): study protocol of a cluster randomised controlled trial.

BACKGROUND: Health service change is difficult to achieve. One strategy to facilitate such change is the clinical pathway, a guide for clinicians containing a defined set of evidence-based interventions for a specific condition. However, optimal strategies for implementing clinical pathways are not well understood. Building on a strong evidence-base, the Psycho-Oncology Co-operative Research Group (PoCoG) in Australia developed an evidence and consensus-based clinical pathway for screening, assessing and managing cancer-related anxiety and depression (ADAPT CP) and web-based resources to support it - staff training, patient education, cognitive-behavioural therapy and a management system (ADAPT Portal). The ADAPT Portal manages patient screening and prompts staff to follow the recommendations of the ADAPT CP. This study compares the clinical and cost effectiveness of two implementation strategies (varying in resource intensiveness), designed to encourage adherence to the ADAPT CP over a 12-month period. METHODS: This cluster randomised controlled trial will recruit 12 cancer service sites, stratified by size (large versus small), and randomised at site level to a standard (Core) versus supported (Enhanced) implementation strategy. After a 3-month period of site engagement, staff training and site tailoring of the ADAPT CP and Portal, each site will "Go-live", implementing the ADAPT CP for 12 months. During the implementation phase, all eligible patients will be introduced to the ADAPT CP as routine care. Patient participants will be registered on the ADAPT Portal to complete screening for anxiety and depression. Staff will be responsible for responding to prompts to follow the ADAPT CP. The primary outcome will be adherence to the ADAPT CP. Secondary outcomes include staff attitudes to and experiences of following the ADAPT CP, using the ADAPT Portal and being exposed to ADAPT implementation strategies, collected using quantitative and qualitative methods. Data will be collected at T0 (baseline, after site engagement), T1 (6 months post Go-live) and T2 (12 months post Go-live). DISCUSSION: This will be the first cluster randomised trial to establish optimal levels of implementation effort and associated costs to achieve successful uptake of a clinical pathway within cancer care. TRIAL REGISTRATION: The study was registered prospectively with the ANZCTR on 22/3/2017. Trial ID ACTRN12617000411347.

Exploring symptom meaning: perspectives of palliative care physicians.

CONTEXT: Understanding patients' symptom experiences is essential to providing effective clinical care. The discussion between patients and physicians of symptom meaning and its significance, however, is ill understood. OBJECTIVES: To investigate palliative care physicians' understanding of symptom meaning, and their experiences of and attitudes towards the discussion of symptom meaning with patients. METHODS: Semi-structured interviews were conducted (N = 17) across Sydney, Australia. Transcripts were analysed using framework analysis. RESULTS: Six key themes were identified: (1) definitions of symptom meaning (causal meanings, functional impact, existential impact, and cascade of meanings); (2) meanings are personal (demographic, culture, spiritual, and family differences); (3) eliciting meanings requires subtlety and trust (following the patient's cues); discussing meaning can be (4) hard (for the patient and health professional); (5) therapeutic (assuaging fears, feeling listened to and valued, increased sense of control, and reduced symptom distress); and (6) enhances clinicians' practice and work satisfaction (provision of more tailored care, reassurance through the provision of information, and strengthening of doctor-patient relationship). CONCLUSIONS: Exploring symptom meaning can serve to provide information, alleviate anxiety, and facilitate individualised care, but only when patients present cues or are open to discuss symptom-related concerns. However, various barriers hinder such dialogue in consultations. Greater awareness of symptom meaning and its influence may facilitate physicians exploring symptom meaning more with patients in the future.

Protocol for a phase III pragmatic stepped wedge cluster randomised controlled trial comparing the effectiveness and cost-effectiveness of screening and guidelines with, versus without, implementation strategies for improving pain in adults with cancer attending outpatient oncology and palliative care services: the Stop Cancer PAIN trial.

BACKGROUND: Pain is a common and distressing symptom in people with cancer, but is under-recognised and under-treated. Australian guidelines for 'Cancer Pain Management in Adults' are available on the Cancer Council Australia Cancer Guideline Wiki. This study aims to evaluate the effectiveness and cost-effectiveness of a suite of guideline implementation strategies for improving pain outcomes in adults with cancer in oncology and palliative care outpatient settings. METHODS: The study will use a stepped-wedge cluster randomised controlled design, with oncology and palliative care outpatient services as the clusters. Patients will be eligible if they are adults with cancer and pain presenting to participating services during the study period. During an initial control arm, services will routinely screen patients for average and worst pain over the past 24 h using a 0-10 numerical rating scale (NRS) and have unfettered access to online guidelines. During the intervention arm, staff at each service will be encouraged to use: 1) a patient education booklet and self-management resource; 2) an online spaced learning cancer pain education module for clinicians from different disciplines; and 3) audit and feedback of service performance on key indices of cancer pain screening, assessment and management. Service-based clinical change champions will lead implementation of these strategies. The trial's primary outcome will be the probability that patients initially screened as having moderate-severe (≥5/10 NRS) worst pain experience a clinically important improvement one week later, defined as ≥ 30% reduction. Secondary outcomes will include patient empowerment and quality of life, carer experience, and cost-effectiveness. For the main analysis, linear mixed models will be used, accounting for clustering and the longitudinal design. Eighty-two patients per service at six services (N = 492) will provide > 90% power. A qualitative sub-study and analyses of structural and process factors will explore opportunities for further refinement and tailoring of the intervention. DISCUSSION: This pragmatic trial will inform implementation of guidelines across a range of oncology and palliative care outpatient service contexts. If found effective, the implementation strategies will be made freely available on the Wiki alongside the guidelines. TRIAL REGISTRATION: Registered 23/01/2015 on the Australian New Zealand Clinical Trials Registry ( ACTRN12615000064505 ).

Cancer pain management needs and perspectives of patients from Chinese backgrounds: a systematic review of the Chinese and English literature.

OBJECTIVE: More than half of all cancer patients experience unrelieved pain. Culture can significantly affect patients' cancer pain-related beliefs and behaviors. Little is known about cultural impact on Chinese cancer patients' pain management. The objective of this review was to describe pain management experiences of cancer patients from Chinese backgrounds and to identify barriers affecting their pain management. METHOD: A systematic review was conducted adhering to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Studies were included if they reported pain management experiences of adult cancer patients from Chinese backgrounds. Five databases were searched for peer-reviewed articles published in English or Chinese journals between1990 and 2015. The quality of included studies was assessed using Joanna Briggs Institution's appraisal tools. RESULTS: Of 3,904 identified records, 23 articles met criteria and provided primary data from 6,110 patients. Suboptimal analgesic use, delays in receiving treatment, reluctance to report pain, and/or poor adherence to prescribed analgesics contributed to the patients' inadequate pain control. Patient-related barriers included fatalism, desire to be good, low pain control belief, pain endurance beliefs, and negative effect beliefs. Patients and family shared barriers about fear of addiction and concerns on analgesic side effects and disease progression. Health professional-related barriers were poor communication, ineffective management of pain, and analgesic side effects. Healthcare system-related barriers included limited access to analgesics and/or after hour pain services and lack of health insurance.Significance of resultsChinese cancer patients' misconceptions regarding pain and analgesics may present as the main barriers to optimal pain relief. Findings of this review may inform health interventions to improve cancer pain management outcomes for patients from Chinese backgrounds. Future studies on patients' nonpharmacology intervention-related experiences are required to inform multidisciplinary and biopsychosocial approaches for culturally appropriate pain management.

Psychiatry trainees' views and educational needs regarding the care of patients with a life-limiting illness.

OBJECTIVE: People with a life-limiting physical illness experience high rates of significant psychological and psychiatric morbidity. Nevertheless, psychiatrists often report feeling ill-equipped to respond to the psychiatric needs of this population. Our aim was to explore psychiatry trainees' views and educational needs regarding the care of patients with a life-limiting physical illness. METHOD: Using semistructured interviews, participants' opinions were sought on the role of psychiatrists in the care of patients with a life-limiting illness and their caregivers, the challenges faced within the role, and the educational needs involved in providing care for these patients. Interviews were audiotaped, fully transcribed, and then subjected to thematic analysis. RESULTS: A total of 17 psychiatry trainees were recruited through two large psychiatry training networks in New South Wales, Australia. There were contrasting views on the role of psychiatry in life-limiting illness. Some reported that a humanistic, supportive approach including elements of psychotherapy was helpful, even in the absence of a recognizable mental disorder. Those who reported a more biological and clinical stance (with a reliance on pharmacotherapy) tended to have a nihilistic view of psychiatric intervention in this setting. Trainees generally felt ill-prepared to talk to dying patients and felt there was an educational "famine" in this area of psychiatry. They expressed a desire for more training and thought that increased mentorship and case-based learning, including input from palliative care clinicians, would be most helpful. SIGNIFICANCE OF RESULTS: Participants generally feel unprepared to care for patients with a life-limiting physical illness and have contrasting views on the role of psychiatry in this setting. Targeted education is required for psychiatry trainees in order to equip them to care for these patients.

Supportive care of women with breast cancer: key concerns and practical solutions.

Patients diagnosed with breast cancer may have supportive care needs for many years after diagnosis. High quality multidisciplinary care can help address these needs and reduce the physical and psychological effects of breast cancer and its treatment. Ovarian suppression and extended endocrine therapy benefits are associated with vasomotor, musculoskeletal, sexual and bone density-related side effects. Aromatase inhibitor musculoskeletal syndrome is a common reason for treatment discontinuation. Treatment strategies include education, exercise, simple analgesia and a change to tamoxifen or another aromatase inhibitor. Chemotherapy-induced alopecia may be a constant reminder of breast cancer to the patient, family, friends, acquaintances and even strangers. Alopecia can be prevented in some patients using scalp-cooling technology applied at the time of chemotherapy infusion. The adverse impact of breast cancer diagnosis and treatment on sexual wellbeing is under-reported. Identification of physical and psychological impacts is needed for implementation of treatment strategies. Fear of cancer recurrence reduces quality of life and increases distress, with subsequent impact on role functioning. Identification and multidisciplinary management are key, with referral to psychosocial services recommended where indicated. The benefits of exercise include reduced fatigue, better mental health and reduced musculoskeletal symptoms, and may also include reduced incidence of breast cancer recurrence. Identification and management of unmet supportive care needs are key aspects of breast cancer care, to maximise quality of life and minimise breast cancer recurrence.

Validating self-report and proxy reports of the Dexamethasone Symptom Questionnaire -Chronic for the evaluation of longer-term corticosteroid toxicity.

PURPOSE: In brain tumours, brain metastases or advanced cancer; treatment with corticosteroids, side effects can add to symptoms. These are best assessed by patients, complementing clinical assessment. We assessed the feasibility and validity of the Dexamethasone Symptom Questionnaire-Chronic (DSQ-Chronic), patient and caregiver versions. METHODS: A longitudinal cohort study was conducted, collecting clinician-rated toxicity, performance status, dexamethasone dose and DSQ-Chronic (patient and caregiver versions) at baseline, then 2, 4 and 8 weeks later. Patients had a primary malignant brain tumour, brain metastases, or advanced cancer; Karnofsky Performance Status ≥40 and predicted survival ≥8 weeks. Analysis included questionnaire completion rates, frequency and severity of dexamethasone-attributable side effects, agreement between patient and caregiver ratings, comparison with clinician-rated toxicity and correlation with performance status. RESULTS: Sixty-six patients were recruited (mean age 60 years), with their caregivers. Completion of questionnaires was over 90% for the dyad at baseline but dropped over time, with caregiver completion rates higher at all timepoints. Agreement between patients and proxies was fair to moderate, and while proxies systematically overestimated symptom severity on DSQ-chronic total scores, the bias was less than 10 points. Patient and clinician agreement was higher for more objective symptoms. CONCLUSION: The DSQ-Chronic is feasible when the patient is relatively well. As capacity to complete the DSQ-Chronic diminishes, caregivers can be proxy-raters. Clinicians capture corticosteroid toxicities, which may not be obvious to the patient. The DSQ-Chronic, patient and caregiver versions, are useful tools to be used with clinician assessment.

Patients' experiences and perspectives of multiple concurrent symptoms in advanced cancer: a semi-structured interview study.

PURPOSE: Patients with advanced cancer typically experience multiple concurrent symptoms, which have a detrimental impact on patient outcomes. No studies to date have qualitatively explored advanced cancer patients' perceptions of multiple symptoms in oncology and palliative care settings. Understanding the experience of multiple symptoms can inform integrated clinical pathways for treating, assessing and reducing symptom burden. This study aims to describe the beliefs, attitudes and experiences of patients with multiple symptoms in advanced cancer. METHODS: Semi-structured interviews were conducted with 58 advanced cancer patients (23 inpatients and 35 outpatients), recruited purposively from two palliative care centres and two hospital-based oncology departments in Sydney, Australia. Transcripts were analysed thematically. RESULTS: Six major themes were identified: imminence of death and deterioration (impending death, anticipatory fear); overwhelming loss of control (symptom volatility, debilitating exhaustion, demoralisation, isolation); impinging on autonomy and identity (losing independence, refusal to a diminished self, self-advocacy, reluctance to burden others); psychological adaptation (accepting the impossibility of recovery, seeking distractions, maintaining hope, mindfulness, accommodating self-limitations), burden of self-management responsibility (perpetual self-monitoring, ambiguity in self-report, urgency of decision making, optimising management); and valuing security and empowerment (safety in coordinated care, compassionate care, fear of medical abandonment, dependence on social support). Patients transitioning from oncology to palliative care settings were more vulnerable to self-management burden. CONCLUSION: Multiple symptoms have a profound impact on patients' autonomy, function and psychological state. Multiple symptom management and integrated care is needed to empower advanced cancer patients and reduce their struggles with self-management burden, hopelessness, isolation, fear of abandonment and mortality anxieties.