Translation and cultural adaptation of the Greek integrated palliative care outcome scale (IPOS): challenges in a six-phase process.

AIM: To translate and culturally adapt IPOS to the Greek population. METHODS: A four phases- sequential study, which included verification of conceptual equivalence, double forward- backward translations and conceptual cognitive debriefing. Focus group interviews used 'think aloud' and 'verbal probing' techniques. Interviews were audio-recorded, transcribed verbatim and thematically analyzed using predefined categories. Purposely sampled from two oncology and palliative care units in Athens. RESULTS: The Integrated Palliative Care Outcome Scale was well accepted by both patients and health professionals. Overall comprehension and acceptability of the scale were good. The comprehension and judgement challenges identified in the pre-final version were successfully resolved in the cognitive interviewing phase. Five out of the seventeen translated items of the scale were modified after cognitive debriefing. Comprehension difficulties were identified with specific terms (e.g., energy/feeling depressed) and with some answer options. Severity of symptoms and not their impact was a common difficulty. A judgement challenge was reported in relation to 7-days recall and fluctuation of symptoms. Layout concerns in relation to length of questions were also stated. All questions were considered important and none as inappropriate. CONCLUSION: This study demonstrated face and content validity and acceptability of the Integrated Palliative Care Outcome Scale in the Greek context. Cognitive Interviewing proved valuable in refining concepts within the specific cultural context. CLINICAL IMPLICATIONS: The IPOS outcome measure tool is now being used routinely in a palliative care service in Athens and is currently used to evaluate service outcomes.

Stopping nucleot(s)ide analogues in non-cirrhotic HBeAg-negative chronic hepatitis B patients: HBsAg loss at 96 weeks is associated with low baseline HBsAg levels.

BACKGROUND AND AIMS: Current guidelines recommend long-term nucleot(s)ide analogue (NA) therapy for patients with HBeAg-negative chronic hepatitis B (CHB). However, disease remission has been described after stopping NA therapy, as well as HBsAg loss. METHODS: We performed a prospective multi-centre cohort study of stopping NA therapy. Inclusion criteria were HBeAg-negative CHB, the absence of cirrhosis and HBVDNA5× ULN occurred in 35 (32%); ALT flares were not associated with HBsAg loss. There were no unexpected safety issues. CONCLUSION: Virological reactivation was very common after stopping NA therapy and occurred earlier after stopping TDF versus ETV. The majority of patients had ALT <2× ULN at week 96, but only one-third achieved disease remission and HBsAg loss was rare. Very low HBsAg levels at baseline were uncommon but predicted for HBsAg loss and disease remission.

Tobacco use, smoking identities and pathways into and out of smoking among young adults: a meta-ethnography.

BACKGROUND: This meta-ethnography investigates how young adults describe their tobacco use, smoking identities and pathways into and out of regular smoking, to inform future smoking prevention and harm reduction interventions. METHODS: Eight databases were systematically searched using keywords and indexed terms. Studies were included if they presented qualitative data from young adults aged 16-25 reporting smoking histories and/or smoking identities from countries culturally similar to the UK. A systematic and rigorous meta-ethnographic approach was employed, consistent with Noblit and Hare's methodology. RESULTS: Thirty papers were included. Reasons stated for taking up smoking and becoming a smoker included alleviating stress, transforming one's identity, and coping with the transition to further education, employment or leaving home. Many used smoking to aid acceptance within new peer groups, particularly when alcohol was present. Smoking was also perceived as an act of resistance and a coping mechanism for those with marginalised identities. Barriers to quitting smoking included young adults' minimisation or denial of the health risks of smoking and not identifying with "being a smoker". CONCLUSIONS: This meta-ethnography may provide a blueprint to inform the development of health and wellbeing interventions designed specifically for young adults. Smoking cessation interventions should be co-designed with young adults based on their perceived needs, resonant with their desire to quit in the future at key milestones. Harm reduction interventions should address the social aspect of addiction, without reinforcing stigma, particularly for those with marginalised identities.

Palliative care interventions in intensive care unit patients.

PURPOSE: The integration of palliative care into intensive care units (ICUs) is advocated to mitigate physical and psychological burdens for patients and their families, and to improve end-of-life care. The most efficacious palliative care interventions, the optimal model of their delivery and the most appropriate outcome measures in ICU are not clear. METHODS: We conducted a systematic review of randomised clinical trials and observational studies to evaluate the number and types of palliative care interventions implemented within the ICU setting, to assess their impact on ICU practice and to evaluate differences in palliative care approaches across different countries. RESULTS: Fifty-eight full articles were identified, including 9 randomised trials and 49 cohort studies; all but 4 were conducted within North America. Interventions were categorised into five themes: communication (14, 24.6%), ethics consultations (5, 8.8%), educational (18, 31.6%), involvement of a palliative care team (28, 49.1%) and advance care planning or goals-of-care discussions (7, 12.3%). Thirty studies (51.7%) proposed an integrative model, whilst 28 (48.3%) reported a consultative one. The most frequently reported outcomes were ICU or hospital length of stay (33/55, 60%), limitation of life-sustaining treatment decisions (22/55, 40%) and mortality (15/55, 27.2%). Quantitative assessment of pooled data was not performed due to heterogeneity in interventions and outcomes between studies. CONCLUSION: Beneficial effects on the most common outcomes were associated with strategies to enhance palliative care involvement, either with an integrative or a consultative approach. Few studies reported functional outcomes for ICU patients. Almost all studies were from North America, limiting the generalisability to other healthcare systems.

Chemotherapy decision-making in advanced lung cancer: a prospective qualitative study.

OBJECTIVE: To study how treatment decisions are made alongside the lung cancer clinical pathway. METHODS: A prospective, multicentre, multimethods, five-stage, qualitative study. Mediated discourse, thematic, framework and narrative analysis were used to analyse the transcripts. RESULTS: 51 health professionals, 15 patients with advanced lung cancer, 15 family members and 18 expert stakeholders were recruited from three UK NHS trusts. Multidisciplinary team (MDT) members constructed treatment recommendations around patient performance status, pathology, clinical information and imaging. Information around patients' social context, needs and preferences were limited. The provisional nature of MDTs treatment recommendations was not always linked to future discussions with the patient along the pathway, that is, patients' interpretation of their prognosis, treatment discussions occurring prior to seeing the oncologist. This together with the rapid disease trajectory placed additional stress on the oncologist, who had to introduce a different treatment option from that recommended by the MDT or patient's expectations. Palliative treatment was not referred to explicitly as such, due to its potential for confusion. Patients were unaware of the purpose of each consultation and did not fully understand the non-curative intent of treatment pathways. Patients' priorities were framed around social and family needs, such as being able to attend a family event. CONCLUSION: Missed opportunities for information giving, affect both clinicians and patients; the pathway for patients with non-small cell lung cancer focuses on clinical management at the expense of patient-centred care. Treatment decisions are a complex process and patients draw conclusions from healthcare interactions prior to the oncology clinic, which prioritises aggressive treatment and influences decisions.

Palliative care interventions in intensive care unit patients - a systematic review protocol.

BACKGROUND: Even though data suggest that palliative care (PC) improves patient quality of life, caregiver burden, cost, and intensive care unit (ICU) length of stay, integration of PC in the ICU is far from being universally accepted. Poor understanding of what PC provides is one of the barriers to the widespread implementation of their services in ICU. Evidence suggests that the availability of specialist PC is lacking in most European countries and provided differently depending on geographical location. The aim of this systematic review is to compare the numbers and types of PC interventions and gauge their impact on stakeholder outcomes and ICU resource utilisation. METHODS: We will undertake a systematic review of the published peer-reviewed journal articles; our search will be carried out MEDLINE, Embase, Cochrane, CINAHL, and PsycINFO. The search strategy will include variations in the term 'palliative care' and 'intensive care'. All studies with patient populations undergoing palliative care interventions will be selected. Only full-text articles will be considered, and conference abstracts excluded. There will be no date restrictions on the year of publications or on language. The primary aim of the present study is to compare the numbers and types of PC interventions in ICU and their impact on stakeholder (patient, family, clinician, other) outcomes. Reporting of findings will follow the Preferred Reporting Items of Systematic Reviews and Meta-Analyses (PRISMA) guidelines. DISCUSSION: This review will provide insight into the implementation of palliative care in ICU, elucidate differences between countries and health systems, reveal most effective models, and contribute to identifying research priorities to improve outcomes. SYSTEMATIC REVIEW REGISTRATION: International Prospective Register of Systematic reviews PROSPERO ( CRD42018094315 ).

Symptom management, nutrition and hydration at end-of-life: a qualitative exploration of patients', carers' and health professionals' experiences and further research questions.

BACKGROUND: Symptom management is an essential aspect of palliative and end-of-life care, but evidence suggests that patients' symptoms may not always be relieved, causing significant harm to patients and magnifying their relatives' distress. A growing body of evidence focuses on symptom management at the end-of-life, but research funding for palliative care remains disproportionately low. It is therefore crucial that research funding is targeted at areas of importance to patients and relatives. The Palliative and end-of-life care Priority Setting Partnership (PeolcPSP) undertook a UK-wide free-text survey to establish research priorities within palliative and end-of-life care and disseminated its results in 2015. Much of the data were related more broadly to personal perceptions and experiences rather than specific research questions. The aim of this article is to report on a supplementary analysis exploring the experiences and questions of PeolcPSP survey respondents regarding symptoms, hydration and nutrition. METHODS: The PeolcPSP data (n = 1403) were coded by a team of qualitative researchers in a supplementary analysis. There were 190 responses that related to symptoms, nutrition and hydration. The data were analysed thematically using Braun and Clarke's approach. RESULTS: Five themes were identified: pain, breathlessness, agitation, nutrition and hydration. The majority of responses related to symptoms that were sub-optimally managed, in particular pain. Nutrition and hydration were of significant concern, particularly for carers. Overall, respondents consistently asked about the most effective, evidence-based methods for managing symptoms and suggested areas where further research is necessary. CONCLUSIONS: This study highlights the perceptions and experiences of patients, families and professionals within palliative care, highlighting the need for improved care, communication and further research to establish which treatments are most effective within a palliative care population. This is essential to reduce harm and distress for patients and families.

Development of an intervention to support patients and clinicians with advanced lung cancer when considering systematic anticancer therapy: protocol for the PACT study.

INTRODUCTION: Patient-centred care is essential to the delivery of healthcare; however, this necessitates direct patient involvement in clinical decision-making and can be challenging for patients diagnosed with advanced non-small cell lung cancer where there may be misunderstanding of the extent of disease, prognosis and aims of treatment. In this context, decisions are complex and there is a need to balance the risks and benefits, including treatment with palliative intent. The aim of the PACT study is to identify the information and decision support needs of patients, leading to the development of an intervention to support patients with advanced lung cancer when considering treatment options. METHODS AND ANALYSIS: PACT is a five-stage, multimethod and multicentre study. Participants: Patients and health professionals will be recruited from three health boards. Methods: Non-participant observation of multidisciplinary team meetings (n=12) will be used to determine patients' allocation to treatment pathways (stage I). Non-participant observation of patient-clinician consultations (n=20-30) will be used to explore communication of treatment options and decision-making. Extent of participation in decision-making will be assessed using the Observing Patient Involvement in Shared Decision-Making tool. Interviews with patients (stage III) and their clinicians (stage IV) will explore the perception of treatment options and involvement in decision-making. Based on stages I-IV, an expert consensus meeting will finalise the content and format of the intervention. Cognitive interviews with patients will then determine the face validity of the intervention (stage V). Analysis: analysis will be according to data type and research question and will include mediated discourse analysis, thematic analysis, framework analysis and interpretative phenomenological analysis. ETHICS AND DISSEMINATION: Ethical approval has been granted. The study findings will contribute to and promote shared and informed decision-making in the best interest of patients and prudent healthcare. We therefore aim to disseminate results via relevant respiratory, oncology and palliative care journals and conferences.