Investigating experiences of people with advanced breast or lung cancer in their natural context: protocol for an experience sampling study.

INTRODUCTION: People with advanced cancer can experience a wide range of multidimensional symptoms or concerns, but little is known about when and how these fluctuate in daily life. Experience sampling methods (ESMs) involve repeated self-reports in people's natural contexts aimed at uncovering everyday life experiences. ESM has limited recall bias and good ecological validity but might be burdensome to patients. This study aims to pretest and evaluate the feasibility and clinical utility of a validated ESM and use it to explore everyday experiences of people living with advanced breast or lung cancer. METHODS AND ANALYSIS: In step 1, we will optimise our ESM method by pretesting it through usability interviews and a pilot ESM study. In step 2, we will evaluate and use the ESM method through an observational ESM study to investigate the daily experiences of people with advanced breast or lung cancer. Step 2 also includes interviews with healthcare professionals to determine the clinical utility of ESM in oncology. Participants will complete a digital questionnaire ten times per day, measuring momentary experiences in the physical, psychological, social, spiritual-existential domains and context. Multilevel regression models will analyse fluctuations and temporal relations among measured experiences and context. Analyses also include evaluation of compliance and participation rates. We will apply content analysis to the usability interviews and follow-up interviews of the pilot ESM study. ETHICS AND DISSEMINATION: We obtained approval from the ethics committees of the University Hospitals of Brussels (BUN: 1432023000043) and Ghent (ONZ-2023-0136). Results will be published in open-access, peer-reviewed journals and presented at conferences. If ESM appears feasible in this population, it could offer new insights into the daily experiences and help optimise support for people with advanced cancer.

Palliative care symptoms, concerns and well-being of older people with frailty and complex care needs upon hospital discharge: a cross-sectional study.

BACKGROUND: Little is known about the nature and intensity of palliative care needs of hospitalised older people. We aimed to describe the palliative care symptoms, concerns, and well-being of older people with frailty and complex care needs upon discharge from hospital to home, and to examine the relationship between palliative care symptoms and concerns, and well-being. METHODS: Cross-sectional study using baseline survey data of a pilot randomised controlled trial. Hospital staff identified patients (≥ 70 years) about to be discharged home, with a clinical frailty score of 5 to 7 and complex needs based on physician-assessment. Patients completed structured interviews, using the Integrated Palliative Care Outcome Scale (IPOS), ICEpop CAPability measure for supportive care (ICECAP-SCM) and IPOS Views on Care quality of life item. We calculated descriptive statistics. RESULTS: We assessed 37 older people with complex needs (49% women, mean age 84, standard deviation 6.1). Symptoms rated as causing severe problems were weakness (46%) and poor mobility (40%); 75% reported that their family felt anxious at least occasionally. Of the 17 IPOS items, 41% of patients rated five or more symptoms as causing severe problems, while 14% reported that they were not severely affected by any symptom. 87% expressed feeling supported. There was a negative correlation between symptoms (IPOS) and well-being (ICECAP); r = -0.41. CONCLUSION: We identified a large variety of symptoms experienced by older people identified as having frailty and complex needs upon hospital discharge. Many were severely affected by multiple needs. This population should be considered for palliative care follow-up at home.

Timely short-term specialized palliative care service intervention for older people with frailty and their family carers in primary care: Development and modelling of the frailty+ intervention using theory of change.

BACKGROUND: Palliative care is advocated for older people with frailty and multimorbidity in the community. However, how to best deliver it is unclear. AIM: To develop and model an intervention of short-term specialized palliative care that is initiated timely based on complex care needs and integrated with primary care for older people with frailty and their family, detailing the intervention components, outcomes and preconditions needed for implementation, using a novel theoretical approach. DESIGN: Observational study informed by the UK MRC guidance for complex interventions integrated with a Theory of Change (i.e. hypothetical causal pathway to impact) approach. We synthesized evidence from a systematic review, semi-structured interviews, group discussions and Theory of Change workshops. SETTING: Primary care in Flanders, Belgium. RESULTS: We identified patient and family carer-related long-term outcomes and preconditions to achieve them for example, service providers are willing and able to deliver the intervention. The intervention components included implementation components, for example, training for service providers, and a core component, that is, provision of timely short-term specialized palliative care by a specialized palliative home care nurse. The latter includes: short-term service delivery; collaborative and integrative working within primary care; delivery of holistic needs- and capacity-based care; person-centred and family-focussed; and goal-oriented pro-active care. CONCLUSIONS: The Theory of Change approach allowed us to identify multiple intervention components targeting different stakeholders to achieve the desired outcomes. It also facilitated a detailed description of the intervention which aims to increase replicability and effective comparisons with other interventions.

Timely short-term specialised palliative care service intervention for frail older people and their family carers in primary care: study protocol for a pilot randomised controlled trial.

INTRODUCTION: There is limited evidence regarding the effectiveness of timely integration of short-term specialised palliative care services for older people in primary care. Using a Theory of Change approach, we developed such an intervention, the Frailty+ intervention. We present the protocol of a pilot randomised controlled trial (RCT) with a process evaluation that aims to assess the feasibility and preliminary effectiveness of the Frailty+ intervention. METHODS AND ANALYSIS: We will conduct a pilot RCT in Flanders, Belgium. Frail older people who are discharged to home from hospital will be identified and recruited. Seventy-six will be randomly assigned either to the control group (standard care) or the intervention group (Frailty+ intervention alongside standard care). Data will be collected from patients and family carers. At the core of the Frailty+ intervention is the provision of timely short-term specialised palliative care facilitated by a nurse from the specialised palliative home care service over a period of 8 weeks. We will assess feasibility in terms of recruitment, randomisation, acceptability of the intervention, retention in the programme and data completion. The primary outcome for assessing preliminary effectiveness is a mean score across five key symptoms that are amenable to change (ie, breathlessness, pain, anxiety, constipation, fatigue), measured at baseline and 8 weeks post-baseline. The process evaluation will be conducted in the intervention group only, with measurements at 8-11 weeks post-baseline to evaluate implementation, mechanisms of change and contextual factors. ETHICS AND DISSEMINATION: The study has been approved by the ethics committee of University Hospital Ghent. Results will be used to inform the design of a full-scale RCT and will be published in a peer-reviewed, open access journal. TRIAL REGISTRATION NUMBER: ISRCTN39282347; Pre-results.

Self-management of patients with advanced cancer: A systematic review of experiences and attitudes.

BACKGROUND: Patients with advanced cancer are increasingly expected to self-manage. Thus far, this topic has received little systematic attention. AIM: To summarise studies describing self-management strategies of patients with advanced cancer and associated experiences and personal characteristics. Also, to summarise attitudes of relatives and healthcare professionals towards patient self-management. DESIGN: A systematic review including non-experimental quantitative and qualitative studies. Data were analysed using critical interpretive synthesis. Included studies were appraised on methodological quality and quality of reporting. DATA SOURCES: MEDLINE, Embase, Cochrane Central, PsycINFO, CINAHL, Web of Science and Google Scholar (until 11 June 2019). RESULTS: Of 1742 identified articles, 31 moderate-quality articles describing 8 quantitative and 23 qualitative studies were included. Patients with advanced cancer used self-management strategies in seven domains: medicine and pharmacology, lifestyle, mental health, social support, knowledge and information, navigation and coordination and medical decision-making (29 articles). Strategies were highly individual, sometimes ambivalent and dependent on social interactions. Older patients and patients with more depressive symptoms and lower levels of physical functioning, education and self-efficacy might have more difficulties with certain self-management strategies (six articles). Healthcare professionals perceived self-management as desirable and achievable if based on sufficient skills and knowledge and solid patient-professional partnerships (three articles). CONCLUSION: Self-management of patients with advanced cancer is highly personal and multifaceted. Strategies may be substitutional, additional or even conflicting compared to care provided by healthcare professionals. Self-management support can benefit from an individualised approach embedded in solid partnerships with relatives and healthcare professionals.

Specialist palliative care services for older people in primary care: A systematic review using narrative synthesis.

BACKGROUND: There is recognition that older people with incurable conditions should have access to specialist palliative care services. However, it remains unclear which activities and outcomes these services entail for older people in primary care and to which patients they are provided. AIM: The aim of this review was to identify the criteria for referral to specialist services; who provides specialist palliative care; through which activities and with which frequency; which outcomes are reported; and which suggestions are made to improve services. DESIGN: Systematic review of the literature and narrative synthesis. Quality appraisal and selection of studies were performed independently by two researchers. Participant characteristics, intervention features, outcome data and suggestions for improvement were retrieved. DATA SOURCES: Embase, Medline, Web of Science, Cochrane, Google Scholar, PsycINFO and CINAHL EBSCO databases (until June 2019). RESULTS: Ten eligible articles, three qualitative, three quantitative, three mixed-method and one narrative review, were identified. Referral criteria were mainly based on patient characteristics such as diagnosis. The specialist services involved a variety of activities and outcomes and descriptions were often lacking. Services could be improved regarding the information flow between healthcare professionals, greater in-depth palliative care knowledge for case managers and social workers, identification of a key worker and support for family carers. CONCLUSION: The limited evidence available shows areas for improvement of the quality of and access to specialist services for older people, such as support for family carers. In addition, this review underscores the need for comprehensive reporting of interventions and the use of consensus-based outcome measures.

Primary palliative care for older people in three European countries: a mortality follow-back quality study.

BACKGROUND: Many older people with serious chronic illnesses experience complex health problems for which palliative care is indicated. We aimed to examine the quality of primary palliative care for people aged 65-84 years and those 85 years and older who died non-suddenly in three European countries. METHODS: This is a nationwide representative mortality follow-back study. General practitioners (GPs) belonging to epidemiological surveillance networks in Belgium (BE), Italy (IT) and Spain (ES) (2013-2015) registered weekly all deaths in their practices. We included deaths of people aged 65 and excluded sudden deaths judged by GPs. We applied a validated set of quality indicators. RESULTS: GPs registered 3496 deaths, of which 2329 were non-sudden (1126 aged 65-84, 1203 aged 85+). GPs in BE (reference category) reported higher scores than IT across almost all indicators. Differences with ES were not consistent. The score in BE particularly differed from IT on GP-patient communication (aged 65-84: 61% in BE vs 20% in IT (OR=0.12, 95% CI 0.07 to 0.20) aged 85+: 47% in BE vs 9% in IT (OR=0.09, 95% CI 0.05 to 0.16)). Between BE and ES, we identified a large difference in involvement of palliative care services (aged 65-84: 62% in BE vs 89% in ES (OR=4.81, 95% CI 2.41 to 9.61) aged 85+: 61% in BE vs 77% in ES (OR=3.1, 95% CI 1.71 to 5.53)). CONCLUSIONS: Considerable country differences were identified in the quality of primary palliative care for older people. The data suggest room for improvement across all countries, particularly regarding pain measurement, GP-patient communication and multidisciplinary meetings.

Shared decision-making for delivery mode: An OPTION scale observer-based evaluation.

OBJECTIVE: Shared decision-making (SDM) may help to reduce the rate of Cesarean Delivery (CD). The aim of the study was to evaluate the extent to which pregnant women are involved in SDM about the mode of delivery, applying the Italian version of the OPTION12 scale to obstetric consultations. METHODS: Fifty-eight outpatient consultations were rated; statistical associations between OPTION12 scores and sociodemographic data of both patient and physicians were determined. RESULTS: The OPTION12 total scores showed a skewed distribution in the lower range of total scores. Total scores in a percentage basis ranged from 0 to 69, with a mean of 21.2 (±19.84) and a median of 13.5. Mean and median scores for all the 12 OPTION12 items never reached the minimum skill level. CONCLUSION: A low level of patient involvement in deciding between a CD and a Vaginal Delivery (VD) was demonstrated. Interventions aiming at educating obstetricians as well as the adoption of decision aids are requested. PRACTICE IMPLICATIONS: The OPTION12 scale may prove useful for testing the extent of pregnant women's involvement in deciding between CD and VD. The awareness of a low patient involvement seems mandatory to improve SDM and may lead to medico-legal protection.

Discussions about palliative sedation in hospice: Frequency, timing and factors associated with patient involvement.

OBJECTIVE: To investigate whether and when palliative sedation was discussed with hospice patients with cancer and/or with their families and factors associated with patient involvement in such discussions. METHODS: Medical records of all patients with cancer who died in an Italian hospice in 2014-2015 (N = 326) were retrospectively reviewed. Multiple logistic regression was used to assess the association between patients' characteristics and palliative sedation discussion with the patient versus palliative sedation discussion only with the family. RESULTS: Palliative sedation discussion was in 51.8% of the cases reported in the record. In most of the cases, discussions were conducted pre-emptively. Palliative sedation was used for 67.3% of the patients who were involved in the discussion and for 32.7% of the patients when the topic was discussed only with the family. Patient involvement in palliative sedation discussions was negatively associated with living with others (OR 0.34, CI 0.15; 0.77), and positively associated with awareness of prognosis (OR 5.61, CI 2.19; 14.33) and days of survival after hospice admission (OR 3.41, CI 1.55; 7.51). CONCLUSION: Policies encouraging patient involvement in palliative care decision-making, including palliative sedation, should be implemented and their adoption should be carefully examined. Prospective studies addressing this topic are needed.

Integrative network-based analysis of mRNA and microRNA expression in 1,25-dihydroxyvitamin D3-treated cancer cells.

Nutritional systems biology is an evolving research field aimed at understanding nutritional processes at a systems level. It is known that the development of cancer can be influenced by the nutritional status, and the link between vitamin D status and different cancer types is widely investigated. In this study, we performed an integrative network-based analysis using a publicly available data set studying the role of 1,25-dihydroxyvitamin D3 (1,25(OH)2D3) in prostate cancer cells on mRNA and microRNA level. Pathway analysis revealed 15 significantly altered pathways: eight more general mostly cell cycle-related pathways and seven cancer-specific pathways. The changes in the G1-to-S cell cycle pathway showed that 1,25(OH)2D3 down-regulates the genes influencing the G1-to-S phase transition. Moreover, after 1,25(OH)2D3 treatment the gene expression in several cancer-related processes was down-regulated. The more general pathways were merged into one network and then extended with known protein-protein and transcription factor-gene interactions. Network algorithms were used to (1) identify active network modules and (2) integrate microRNA regulation in the network. Adding microRNA regulation to the network enabled the identification of gene targets of significantly expressed microRNAs after 1,25(OH)2D3 treatment. Six of the nine differentially expressed microRNAs target genes in the extended network, including CLSPN, an important checkpoint regulator in the cell cycle that was down-regulated, and FZD5, a receptor for Wnt proteins that was up-regulated. The extendable network-based tools PathVisio and Cytoscape enable straightforward, in-depth and integrative analysis of mRNA and microRNA expression data in 1,25(OH)2D3-treated cancer cells.