Emotional disclosure in palliative care: A scoping review of intervention characteristics and implementation factors.

BACKGROUND: Emotional disclosure is the therapeutic expression of emotion. It holds potential as a means of providing psychological support. However, evidence of its efficacy in palliative settings is mixed. This may be due to variation in intervention characteristics. AIM: To derive a greater understanding of the characteristics of potentially effective emotional disclosure-based interventions in palliative care by:(1) Developing a taxonomy of emotional disclosure-based interventions tested in people with advanced disease and(2) Mapping and linking objectives, outcomes, underlying mechanisms, and implementation factors. DESIGN: A scoping review drawing on Intervention Component Analysis to combine evidence from studies' methods, results, and discussion sections. DATA SOURCES: Six databases were searched to May 2020 including CINAHL, PsycINFO, and MEDLINE. Studies of emotional disclosure in adults with advanced disease were included. Study quality was appraised using an established tool. RESULTS: Seven thousand seven hundred ninety-two unique records were screened, of which 25 primary studies were included. Intervention characteristics were grouped into classes within three domains: topic of disclosure, format, and dose. Evidence was not available to determine which, if any, of the characteristics is most effective. Thematic synthesis of evidence from methods and discussion sections identified factors to consider in tailoring an emotional disclosure-based intervention to this setting, including: population characteristics (e.g. time since diagnosis), providing a safe environment, and flexibility in format. CONCLUSIONS: This review approach facilitated a clearer understanding of factors that may be key in developing emotional disclosure-based interventions for palliative populations. Intervention Component Analysis has potential for application elsewhere to help develop evidence-based interventions.

Quality of life in primary sclerosing cholangitis: a systematic review.

BACKGROUND: Primary sclerosing cholangitis (PSC) is a rare bile duct and liver disease which can considerably impact quality of life (QoL). As part of a project developing a measure of QoL for people with PSC, we conducted a systematic review with four review questions. The first of these questions overlaps with a recently published systematic review, so this paper reports on the last three of our initial four questions: (A) How does QoL in PSC compare with other groups?, (B) Which attributes/factors are associated with impaired QoL in PSC?, (C) Which interventions are effective in improving QoL in people with PSC?. METHODS: We systematically searched five databases from inception to 1 November 2020 and assessed the methodological quality of included studies using standard checklists. RESULTS: We identified 28 studies: 17 for (A), ten for (B), and nine for (C). Limited evidence was found for all review questions, with few studies included in each comparison, and small sample sizes. The limited evidence available indicated poorer QoL for people with PSC compared with healthy controls, but findings were mixed for comparisons with the general population. QoL outcomes in PSC were comparable to other chronic conditions. Itch, pain, jaundice, severity of inflammatory bowel disease, liver cirrhosis, and large-duct PSC were all associated with impaired QoL. No associations were found between QoL and PSC severity measured with surrogate markers of disease progression or one of three prognostic scoring systems. No interventions were found to improve QoL outcomes. CONCLUSION: The limited findings from included studies suggest that markers of disease progression used in clinical trials may not reflect the experiences of people with PSC. This highlights the importance for clinical research studies to assess QoL alongside clinical and laboratory-based outcomes. A valid and responsive PSC-specific measure of QoL, to adequately capture all issues of importance to people with PSC, would therefore be helpful for clinical research studies.

Identification and evaluation of observational measures for the assessment and/or monitoring of level of consciousness in adult palliative care patients: A systematic review for I-CAN-CARE.

BACKGROUND: The use of observational measures to assess palliative care patients' level of consciousness may improve patient care and comfort. However, there is limited knowledge regarding the validity and reliability of these measures in palliative care settings. AIM: To identify and evaluate the psychometric performance of observational level of consciousness measures used in palliative care. DESIGN: Systematic review; PROSPERO registration: CRD42017073080. DATA SOURCES: We searched six databases until November 2018, using search terms combining subject headings and free-text terms. Psychometric performance for each identified tool was appraised independently by two reviewers following established criteria for developing and evaluating health outcome measures. RESULTS: We found 35 different levels of consciousness tools used in 65 studies. Only seven studies reported information about psychometric performance of just eight tools. All other studies used either ad hoc measures for which no formal validation had been undertaken (n = 21) or established tools mainly developed and validated in non-palliative care settings (n = 37). The Consciousness Scale for Palliative Care and a modified version of the Richmond Agitation-Sedation Scale received the highest ratings in our appraisal, but, since psychometric evidence was limited, no tool could be assessed for all psychometric properties. CONCLUSION: An increasing number of studies in palliative care are using observational measures of level of consciousness. However, only a few of these tools have been tested for their psychometric performance in that context. Future research in this area should validate and/or refine the existing measures, rather than developing new tools.

Supportive and palliative care in people with cirrhosis: International systematic review of the perspective of patients, family members and health professionals.

BACKGROUND & AIMS: People with cirrhosis have unmet needs, which could benefit from a palliative care approach. Developing effective services needs to be based on evidence from those with personal experience. This review aims to explore; patient and family perspectives of perceived needs including communication; health professionals' perspectives on delivery of care and improving palliative care between specialities. METHODS: A literature search was conducted in Medline, Embase and CINAHL using key words reporting on the perspectives of patients with liver cirrhosis (18 years and over), family members or health professionals on the provision of care in liver cirrhosis. Study quality was assessed using the Mixed Methods Appraisal Tool. Qualitative and quantitative findings were grouped together according to the main relevant themes identified. RESULTS: Nineteen research studies predominantly from high-income Western countries were identified, with a total sample consisting of 1,413 patients, 31 family carers and 733 health professionals. Patients and family members had limited understanding of cirrhosis or its impact. They wanted better information about their disease, its treatment and help with psychological and practical needs. Health professionals had difficulty communicating about these issues to patients and their families. General practitioners left care predominantly to the liver clinicians, who lacked confidence to have discussions about prognosis or future care preferences. The role of palliative care was recognised as important in caring for this group through earlier integration with liver and community services. CONCLUSIONS: Health professionals need support to improve their communication with patients, to address patients' broader needs beyond medical treatment and to develop new models to improve palliative care coordination between different medical specialities. Future research should focus on developing communication aides, testing existing tools to identify suitable patients for supportive care and exploring robust ways of evaluating supportive care interventions, with more studies needed from middle- and low-income countries. Registration number: PROSPERO CRD42017064770. LAY SUMMARY: Patients and their families had a poor understanding of advanced liver disease and its impact on them. They need more information about the treatments they receive and how to get practical and psychological support. Liver specialists and GPs found it difficult to talk to patients and their families about the seriousness of advanced liver disease and the lack of healthcare options available to them if their condition gets worse. All doctors and nurses involved in the care of patients with advanced liver disease recognise that palliative and supportive care have an important role in improving patient care.

Cancer-Related Fatigue in Adolescents and Young Adults After Cancer Treatment: Persistent and Poorly Managed.

Cancer-related fatigue is the most prevalent and distressing symptom experienced by adolescents and young adults (AYAs). An electronic survey was undertaken to ascertain current fatigue management and perceptions of its effectiveness. Eighty-five percent of responders (68/80) experienced fatigue, and it was worse more than 1 year after cancer treatment ended, compared to <1 year (p = 0.007). Forty-one percent received no fatigue management. Although advice to exercise was the most frequent intervention, the greatest impact of fatigue was on the ability to exercise and most did not find exercise advice helpful. Early intervention is warranted, supporting AYAs to persevere with increasing activity.

The under reporting of recruitment strategies in research with children with life-threatening illnesses: A systematic review.

BACKGROUND: Researchers report difficulties in conducting research with children and young people with life-limiting conditions or life-threatening illnesses and their families. Recruitment is challenged by barriers including ethical, logistical and clinical considerations. AIM: To explore how children and young people (aged 0-25 years) with life-limiting conditions or life-threatening illnesses and their families were identified, invited and consented to research published in the last 5 years. DESIGN: Systematic review. DATA SOURCES: MEDLINE, PsycINFO, Web of Science, Sciences Citation Index and SCOPUS were searched for original English language research published between 2009 and 2014, recruiting children and young people with life-limiting conditions or life-threatening illness and their families. RESULTS: A total of 215 studies - 152 qualitative, 54 quantitative and 9 mixed methods - were included. Limited recruitment information but a range of strategies and difficulties were provided. The proportion of eligible participants from those screened could not be calculated in 80% of studies. Recruitment rates could not be calculated in 77%. A total of 31% of studies recruited less than 50% of eligible participants. Reasons given for non-invitation included missing clinical or contact data, or clinician judgements of participant unsuitability. Reasons for non-participation included lack of interest and participants' perceptions of potential burdens. CONCLUSION: All stages of recruitment were under reported. Transparency in reporting of participant identification, invitation and consent is needed to enable researchers to understand research implications, bias risk and to whom results apply. Research is needed to explore why consenting participants decide to take part or not and their experiences of research recruitment.

The changing nature of end of life care.

Good end of life care (EOLC) for patients with incurable cancer is becoming a greater priority for oncologists in recent years. Frameworks such as the Liverpool Care Pathway (LCP) have often been helpful in guiding good care at the end of life. However, in the past year, the LCP has been phased out of use in the United Kingdom (UK), following concerns that it was poorly implemented. This review describes the LCP's origins in the UK, its strengths and limitations, and the concerns that prompted a review of its use. It describes the recommendations for change made by an independent review, and the alternative strategies now being developed in the UK to guide good EOLC. Although the LCP is still being widely used worldwide, the lessons learned from the UK can be widely applied in other countries.

Patients' reports or clinicians' assessments: which are better for prognosticating?

BACKGROUND: The Prognosis in Palliative care Scale (PiPS) predicts survival in advanced cancer patients more accurately than a doctor's or a nurse's estimate. PiPS scores are derived using observer ratings of symptom severity and performance status. The purpose of this study was to determine whether patient-rated data would provide better prognostic estimates than clinician observer ratings. PATIENTS AND METHODS: 1018 subjects with advanced cancer no longer undergoing tumour-directed therapy were recruited to a multi-centre study. Prognostic models were developed using observer ratings, patient ratings or a composite method that used patient ratings when available or else used observer ratings. The performance of the prognostic models was compared by determining the agreement between the models' predictions and the survival of study participants. RESULTS: All three approaches to model development resulted in prognostic scores that were able to differentiate between patients with a survival of 'days', 'weeks' or 'months+'. However, the observer-rated models were significantly (p<0.05) more accurate than the patient-rated models. CONCLUSIONS: A prognostic model derived using observer-rated data was more accurate at predicting survival than a similar model derived using patient self-report measures. This is clinically important because patient-rated data can be burdensome and difficult to obtain in patients with terminal illnesses.

Cancer fatigue and its impact on patients: knowledge within the cancer care team.

Previous papers reported on the magnitude of fatigue as a problem for cancer patients and the growing recognition by patients, carers and health care professionals of the impact of cancer fatigue on quality of life. This paper presents findings from a United Kingdom survey of the knowledge of cancer fatigue and its impact on patients amongst cancer nurses, radiographers, haematologists and oncologists. We discuss how the context and chronology of care may influence differences in this knowledge between cancer care team members. Future directions for collaborative care, further research and interprofessional education are outlined.