Abstract
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.
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.
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.
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.
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.
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.
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.
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.
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".
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.
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.
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.
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.
International Prospective Register of Systematic reviews PROSPERO ( CRD42018094315 ).
Summary
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 HBVDNA<lower limit of quantification for ≥18 months. We assessed virological and biochemical outcomes including HBsAg loss, as well as NA restart rates, over 96 weeks.
Results
In total, 110 patients 62% entecavir (ETV); 28% tenofovir (TDF), 10% other were enrolled. Median age was 56 years, 57% were male, 85% were Asian, median baseline HBsAg level was 705 (214–2325) IU/ml. Virological reactivation occurred in 109/110 patients, median time to detection was 8 (4–12) weeks, and occurred earlier after stopping TDF versus ETV (median 4 vs. 12 weeks p < 0.001). At week 96, 77 (70%) remained off‐treatment, 65 (59%) had ALT <2× ULN, 31 (28%) patients were in disease remission with HBVDNA <2000 IU/ml plus ALT <2× ULN and 7 (6%) patients had lost HBsAg. Baseline HBsAg ≤10 IU/ml was associated with HBsAg loss (6/9 vs. 1/101 p < 0.001). ALT >5× 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.
Clinical outcomes over time—Intention to treat analysis of clinical outcomes in 110 patients who stopped NA therapy. Patients were classified into the following groups: HBsAg loss, Biochemical Remission (ALT <2× ULN), Virological Remission (HBV DNA <2000), or NA treatment restarted (Figure 1); Low baseline HBsAg levels were associated with higher likelihood of HBsAg loss and lower rates of Virological and Biochemical Relapse—(A) Baseline HBsAg level ≤10 IU/ml was associated with HBsAg loss – 6 of 7 patients who lost HBsAg had a baseline HBsAg level ≤10 IU/ml HBsAg ≤10 IU/ml, HBsAg loss = 6/9 (67%) versus HBsAg >10 IU/ml, HBsAg loss = 1/101 (1%), p < 0.001, Figure 5. Low baseline HBsAg levels were also associated with a lower rate of (B) virological relapse HBsAg level ≤10 IU/ml, 3/9 vs. HBsAg level >10, 95/101, HR 0.15 (0.05, 0.47) p = 0.001 and (C) biochemical relapse HBsAg level ≤10 IU/ml, 1/9 vs. HBsAg level >10, 54/101, HR 0.16 (0.02, 1.13) p = 0.066 through 96 weeks of follow‐up (Figure 2).
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