Patient reported outcome measures of quality of end-of-life care: a systematic review

End-of-life (EoL) care is increasingly used as a generic term in preference to palliative care or terminal care, particularly with reference to individuals with chronic disease, who are resident in community and long-term care (LTC) settings. This review evaluates studies based on patient reported outcome measures (PROMS) of quality of EoL care across all health-care settings. From 1041 citations, 12 studies were extracted by searches conducted in EBSCO, Scopus, Web of Science, PubMed, Cochrane, Open Grey and Google Scholar databases. At present, the evidence base for EoL care is founded on cancer care. This review highlights the paucity of studies that evaluate quality of EoL care for patients with chronic disease outside the established cancer-acute care paradigm, particularly in LTC. This review highlights the absence of any PROMs for the estimated 60% of patients in LTC with cognitive impairment. Patient-reported outcomes (PROs) are critical to understanding how EoL care services and practices affect patients’ health and EoL experience. PROMs describe the quality of care from the patient's perspective and add balance to existing clinical or proxy-derived knowledge on the quality of care and services provided

Men's perspectives on cancer prevention behaviors associated with HPV

Background: The human papillomavirus (HPV) is associated with the diagnosis of anal, penile, and oropharyngeal cancers in men. Evidence indicates that correct condom use in addition to obtaining the HPV vaccine provides the greatest protection from HPV infections. Objective: To explore young men's beliefs and behavioral intention in relation to receiving the HPV vaccine and using a condom correctly and consistently for sexual contact. Methods: A cross-sectional study underpinned by the theory of planned behavior (TPB) was conducted with male participants (n = 359, 18-28 years) who completed an online survey. Descriptive, correlational, and hierarchical regression analyses were performed on both status variables and variables of the TPB. Results: Subjective norms (β = 0.519, P < .001) was identified as the most influential predictor in relation to men's intention to receive the HPV vaccine, while relationship status (β = −0.215, P < .001) and attitudes (β = 0.394, P < .001) presented as the most significant predictors of intention to use a condom. Summarily, 51% of the variance in intention to receive the HPV vaccine and 44% in intention to use a condom were explained by the TPB model. Conclusion: Results from this study will impact on future sexual health research, education programs, and interventions for both HPV preventative behaviors towards the elimination of HPV-related cancers in men

Challenges of living with and managing inflammatory bowel disease: A meta-synthesis of patients' experiences

Aims and objectives: To examine qualitative studies which reported on patients' challenges of living with and managing inflammatory bowel disease (IBD). Background: There is a growing body of qualitative research focusing on the subjective experiences of patients with IBD. This research points to the daily challenges that patients experience which can relate to their physical and psychological health, as well as their social well-being, and may impact negatively on their lives. To date, there has been little attempt to synthesise these studies, and little is known about how patients manage the challenges they experience. Design: A meta-synthesis was conducted, based on guidelines developed by Sandelowski and Barroso (Handbook for synthesizing qualitative research, Springer, New York, NY, 2007) and PRISMA (Int J Surg, 8, 2009, 336). Methods Searches were conducted within the CINAHL, MEDLINE, PsycINFO, Psychology and Behavioural Sciences Collection and SocINDEX databases to locate qualitative and mixed methodology studies. The retrieved articles were screened against predetermined inclusion criteria. Quality appraisal was assessed using the Joanna Briggs Institute critical appraisal tool for qualitative research (Int J Evid Based Healthc, 13, 2015, 179). Results: Thematic analysis resulted in three themes: the unpredictability of living with IBD, the emotional turmoil of living with IBD and striving to maintain a normal life in managing IBD. Conclusion: The greatest challenges for patients identified in this meta-synthesis were the physical symptoms associated with IBD. These impacted negatively on their psychological and social well-being and reduced their quality of life. There is a notable gap in research on patient experiences of managing the challenges identified in everyday life and to what extent they receive support from healthcare professionals. Relevance to clinical practice: The results of this meta-synthesis offer insights into how the physical challenges of living with IBD, particularly in relation to symptoms, impact adversely on patients' psychological and social well-being. These insights are clinically relevant to healthcare professionals as a basis for supporting patients to manage their challenges

The KidScope Study: An analysis of a community paediatric clinic set in a disadvantaged area of Ireland

The most critical period of human development is from conception to age six years when important brain structures develop. These structures influence child development, well-being, learning, and behaviours that follow. Research shows children from economically disadvantaged areas have poorer developmental, health, and lifelong outcomes. A considerable proportion of developmental delay is avoidable and early detection and intervention can improve child, family, and community outcomes. Ireland’s disjointed early intervention system sees children from more affluent communities access services faster through paid private assessment and intervention. KidScope is the only community paediatric clinic in Ireland to offer assessment and onward referral from birth to six years within a disadvantaged area. The clinic intercepts the gap within the early intervention system and breaks the cycle of intergenerational poverty by disrupting the impact exclusion to healthcare has on vulnerable children and families. We aim to evaluate KidScope in order to contribute to the evidence on addressing avoidable developmental delay in disadvantaged areas through early detection and timely referral to services. Findings to date highlight the challenges vulnerable families face when accessing paediatric healthcare, the healthcare needs of children experiencing adversity, and how community paediatric clinics identify and support developmental delay

Economic (gross cost) analysis of systematically implementing a programme of advance care planning in three Irish nursing homes.

Background: Although advance care planning (ACP) and the use of advanced care directives (ACD) and end-of-life care plans are associated with a reduction in inappropriate hospitalisation, there is little evidence supporting the economic benefits of such programmes. We assessed the economic impact (gross savings) of the Let Me Decide (LMD) ACP programme in Ireland, specifically the impact on hospitalisations, bed days and location of resident deaths, before and after systematic implementation of the LMD-ACP combined with a palliative care education programme. Methods: The LMD-ACP was introduced into three long-term care (LTC) facilities in Southern Ireland and outcomes were compared pre and post implementation. In addition, 90 staff were trained in a palliative care educational programme. Economic analysis including probabilistic sensitivity analysis was performed. Results: The uptake of an ACD or end-of-life care post-implementation rose from 25 to 76 %. Post implementation, there were statistically significant decreases in hospitalisation rates from baseline (hospitalisation incidents declined from 27.8 to 14.6 %, z = 3.96, p < 0.001; inpatient hospital days reduced from 0.54 to 0.36 %, z = 8.85, p < 0.001). The percentage of hospital deaths also decreased from 22.9 to 8.4 %, z = 3.22, p = 0.001. However, length of stay (LOS) increased marginally (7–9 days). Economic analysis suggested a cost-reduction related to reduced hospitalisations ranging between €10 and €17.8 million/annum and reduction in ambulance transfers, estimated at €0.4 million/annum if these results were extrapolated nationally. When unit costs and LOS estimates were varied in scenario analyses, the expected cost reduction owing to reduced hospitalisations, ranged from €17.7 to €42.4 million nationally. Conclusions: Implementation of the LMD-ACP (ACD/end-of-life care plans combined with palliative care education) programme resulted in reduced rates of hospitalisation. Despite an increase in LOS, likely reflecting more complex care needs of admitted residents, gross costs were reduced and scenario analysis projected large annual savings if these results were extrapolated to the wider LTC population in Ireland

Screening for markers of frailty and perceived risk of adverse outcomes using the Risk Instrument for Screening in the Community (RISC)

BACKGROUND: Functional decline and frailty are common in community dwelling older adults, increasing the risk of adverse outcomes. Given this, we investigated the prevalence of frailty-associated risk factors and their distribution according to the severity of perceived risk in a cohort of community dwelling older adults, using the Risk Instrument for Screening in the Community (RISC). METHODS: A cohort of 803 community dwelling older adults were scored for frailty by their public health nurse (PHN) using the Clinical Frailty Scale (CFS) and for risk of three adverse outcomes: i) institutionalisation, ii) hospitalisation and iii) death, within the next year, from one (lowest) to five (highest) using the RISC. Prior to scoring, PHNs stated whether they regarded patients as frail. RESULTS: The median age of patients was 80 years (interquartile range 10), of whom 64% were female and 47.4% were living alone. The median Abbreviated Mental Test Score (AMTS) was 10 (0) and Barthel Index was 18/20 (6). PHNs regarded 42% of patients as frail, while the CFS categorized 54% (scoring ≥5) as frail. Dividing patients into low-risk (score one or two), medium-risk (score three) and high-risk (score four or five) using the RISC showed that 4.3% were considered high risk of institutionalization, 14.5% for hospitalization, and 2.7% for death, within one year of the assessment. There were significant differences in median CFS (4/9 versus 6/9 versus 6/9, p < 0.001), Barthel Index (18/20 versus 11/20 versus 14/20, p < 0.001) and mean AMTS scores (9.51 versus 7.57 versus 7.00, p < 0.001) between those considered low, medium and high risk of institutionalisation respectively. Differences were also statistically significant for hospitalisation and death. Age, gender and living alone were inconsistently associated with perceived risk. Frailty most closely correlated with functional impairment, r = −0.80, p < 0.001. CONCLUSION: The majority of patients in this community sample were perceived to be low risk for adverse outcomes. Frailty, cognitive impairment and functional status were markers of perceived risk. Age, gender and social isolation were not and may not be useful indicators when triaging community dwellers. The RISC now requires validation against adverse outcomes

The inter-rater reliability of the Risk Instrument for Screening in the Community

Predicting risk of adverse healthcare outcomes is important to enable targeted delivery of interventions. The Risk Instrument for Screening in the Community (RISC), designed for use by public health nurses (PHNs), measures the one-year risk of hospitalisation, institutionalisation and death in community-dwelling older adults according to a five-point global risk score: from low (score 1,2), medium (3) and high (4,5). We examined the inter-rater reliability (IRR) of the RISC between student PHNs (n=32) and expert raters using six cases (two low, medium and high-risk), scored before and after RISC training. Correlations increased for each adverse outcome, statistically significantly for institutionalisation (r=0.72 to 0.80,p=0.04) and hospitalisation, (r=0.51 to 0.71,p<0.01) but not death. Training improved accuracy for low-risk but not all high-risk cases. Overall, the RISC showed good IRR, which increased after RISC training. That reliability reduced for some high-risk cases suggests that the training programme requires adjustment to further improve IRR

The impact of the mySupport advance care planning intervention on family caregivers’ perceptions of decision-making and care for nursing home residents with dementia : pretest-posttest study in six countries

Background the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative’s future care. Objectives to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers’ uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents’ hospitalisations and documented advance decisions. Design a pretest–posttest design. Setting in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. Participants in total, 88 family caregivers completed baseline, intervention and follow-up assessments. Methods family caregivers’ scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents’ hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. Results family caregivers reported less decision-making uncertainty (−9.6, 95% confidence interval: −13.3, −6.0, P  Conclusions the mySupport intervention may be impactful in countries beyond the original setting