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Measuring engagement in advance care planning: a cross-sectional multicentre feasibility study.

ABSTRACT: OBJECTIVES:To assess the feasibility, acceptability and clinical sensibility of a novel survey, the advance care planning (ACP) Engagement Survey, in various healthcare settings. SETTING:A target sample of 50 patients from each of primary care, hospital, cancer care and dialysis care settings. PARTICIPANTS:A convenience sample of patients without cognitive impairment who could speak and read English was recruited. Patients 50 and older were eligible in primary care; patients 80 and older or 55 and older with clinical markers of advanced chronic disease were recruited in hospital; patients aged 19 and older were recruited in cancer and renal dialysis centres. OUTCOMES:We assessed feasibility, acceptability and clinical sensibility of the ACP Engagement Survey using a 6-point scale. The ACP Engagement Survey measures ACP processes (knowledge, contemplation, self-efficacy and readiness) on 5-point Likert scales and actions (yes/no). RESULTS:196 patients (38-96?years old, 50.5% women) participated. Mean (±SD) time to administer was 48.8±19.6?min. Mean acceptability scores ranged from 3.2±1.3 in hospital to 4.7±0.9 in primary care, and mean relevance ranged from 3.5±1.0 in hospital to 4.9±0.9 in dialysis centres (p<0.001 for both). The mean process score was 3.1±0.6 and the mean action score was 11.2±5.6 (of a possible 25). CONCLUSIONS:The ACP Engagement Survey demonstrated feasibility and acceptability in outpatient settings but was less feasible and acceptable among hospitalised patients due to length. A shorter version may improve feasibility. Engagement in ACP was low to moderate.

SUBMITTER: Howard M

PROVIDER: S-EPMC4932285 | biostudies-literature | 2016 Jun

REPOSITORIES: biostudies-literature

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Measuring engagement in advance care planning: a cross-sectional multicentre feasibility study.

Howard Michelle M Bonham Aaron J AJ Heyland Daren K DK Sudore Rebecca R Fassbender Konrad K Robinson Carole A CA McKenzie Michael M Elston Dawn D You John J JJ

BMJ open 20160623 6

<h4>Objectives</h4>To assess the feasibility, acceptability and clinical sensibility of a novel survey, the advance care planning (ACP) Engagement Survey, in various healthcare settings.<h4>Setting</h4>A target sample of 50 patients from each of primary care, hospital, cancer care and dialysis care settings.<h4>Participants</h4>A convenience sample of patients without cognitive impairment who could speak and read English was recruited. Patients 50 and older were eligible in primary care; patient ...[more]

PMID: 27338877

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Project description:IntroductionMultiple sclerosis (MS) is the most common cause of progressive neurological disability in young adults. The use of advance care planning (ACP) for people with progressive MS (pwPMS) remains limited. The ConCure-SM project aims to assess the effectiveness of a structured ACP intervention for pwPMS. The intervention consists of a training programme on ACP for healthcare professionals caring for pwPMS, and a booklet to be used during the ACP conversation. Herein, we describe the first two project phases.MethodsIn phase 1 we translated and adapted, to the Italian legislation and MS context, the ACP booklet of the National ACP Programme for New Zealand. Acceptability, comprehensibility and usefulness of the booklet were assessed via 13 personal cognitive interviews with pwPMS and significant others (SOs), and one health professional focus group. Based on these findings, we will revise the booklet. In phase 2 we will conduct a single-arm pilot/feasibility trial with nested qualitative study. Participants will be 40 pwPMS, their SOs, health professionals from six MS and rehabilitation centres in Italy. In the 6 months following the ACP conversation, we will assess completion of an advance care plan document (primary outcome), as well as safety of the intervention. Secondary outcomes will be a range of measures to capture the full process of ACP; patient-carer congruence in treatment preferences; quality of patient-clinician communication and caregiver burden. A qualitative process evaluation will help understand the factors likely to influence future implementation and scalability of the intervention.Ethics and disseminationThe project is coleaded by a neurologist and a bioethicist. Phase 1 has received ethical approvals from each participating centre, while phase 2 will be submitted to the centres in May 2021. Findings from both phases will be disseminated widely through peer-reviewed publications, conferences and workshops.Trial registration numberISRCTN48527663; Pre-results.

Project description:BackgroundThe increase in the number of pediatric patients with complex health conditions necessitates the application of advance care planning for children. Earlier, withdrawal of life-sustaining treatment was taboo in the medical society in South Korea due to the history of such practice being punishable by law, and physicians tended to pursue aggressive treatment. With changes in public opinion on end-of-life care, the Korean government enacted a new law that protect human dignity by respecting patients' self-determination and facilitating advance care planning. However, little is known about current state of advance care planning for pediatric patients. The study aimed to assess perceptions regarding advance care planning among South Korean pediatricians and clarify any differences in perception among pediatric subspecialties.MethodsThis study was an observational cross-sectional survey that used a web-based self-report questionnaire. Participants comprised of pediatricians currently caring for children with life-limiting conditions in 2018.ResultsOf the 96 respondents, 89 were included in the analysis. In a hypothetical patient scenario, more hemato-oncologists and intensivists than neonatologists and neurologists preferred to provide comfort care than aggressive treatment. While 72.2% of hemato-oncologists reported that they usually or always discuss advance care plans with parents during treatment, more than half of other pediatricians reported that they seldom do so. Furthermore, 65% of respondents said that they never discuss advance care planning with adolescent patients. Moreover, there were no notable differences among subspecialties. The most prevalent answers to factors impeding advance care planning were lack of systemic support after performing advance care planning (82.0%) and uncertain legal responsibilities (70.8%).ConclusionsThe pediatricians differed in their experiences and attitudes toward advance care planning based on their subspecialty. Consequently, institutional support and education should be provided to physicians so that they can include children and families in discussions on prognosis.

Project description:BACKGROUND:Training has been found effective in improving healthcare professionals' knowledge, confidence, and skills in conducting advance care planning (ACP). However, the association between training and its actual practice in the clinical setting has not been well demonstrated. To fill this gap, this paper examines the association between their readiness for ACP, in terms of perceived relevancy of ACP with their clinical work, attitudes toward and confidence and willingness to perform it, based on the Theory Planned Behavior and relevant training experiences. METHODS:An online survey about experiences about ACP of healthcare professionals, including physicians, nurses, social workers, and allied healthcare professionals, currently working in hospital and community care in Hong Kong was conducted. RESULTS:Of 250 respondents, approximately half (52.0%) had received ACP-related training. Those with relevant training reported significantly more positive in the perceived clinical relevance, willingness, and confidence in conducting ACP and different levels of agreement with 19 out of the 25 statements in a questionnaire about attitudes toward ACP than those without (ps???0.001-0.05). Respondents who received training only in a didactic format reported a significantly lower level of confidence in conducting ACP than did others who received a blended mode of learning (p?=?0.012). Notwithstanding significant differences between respondents with and without relevant training, respondents generally acknowledged their roles in initiating conversations and appreciated ACP in preventing decisional conflict in surrogate decision-making regardless of their training experience. CONCLUSIONS:This paper revealed the association between training and higher level of readiness toward ACP among healthcare professionals. The findings showed that training is a predictor of their readiness for ACP in terms of perceived relevancy, willingness, and confidence. Those who had received training were less likely to consider commonly reported barriers such as time constraints, cultural taboos, and avoidance among patients and family members as hindrances to ACP implementation.

Project description:BackgroundGlobally, initiation of paediatric advance care planning discussions is advocated early in the illness trajectory; however, evidence suggests it occurs at crisis points or close to end of life. Few studies have been undertaken to ascertain the prevalence and determinants of behaviour related to initiation by the healthcare professional.MethodUnderpinned by the Capability, Opportunity, Motivation-Behaviour (COM-B) model for behaviour change, a cross-sectional online survey was conducted in United Kingdom and Ireland using a purposive sample of health professionals. Descriptive and inferential statistics were applied and nonparametric statistical analysis used. Open-ended questions were mapped and correlations between COM-B and demographic profiles identified.ResultsResponses (n = 140): Paediatric advance care planning was viewed positively; however, initiation practices were found to be influenced by wide ranging diagnoses and disease trajectories. Whilst some tools and protocols exist, they were not used in a systematic manner, and initiation behaviour was often not guided by them. Initiation was unstandardized, individually led, guided by intuition and experience and based on a range of prerequisites. Such behaviour, combined with inconsistencies in professional development, resulted in varying practice when managing clinical deterioration. Professionals who felt adequately trained initiated more conversations (capability). Those working in palliative care specialties, hospice settings and doctors initiated more discussions (opportunity). There was no difference in Motivation between professions, clinical settings or specialisms, although 25% (n = 35) of responses indicated discomfort discussing death and 34% (n = 49) worried about families' emotional reaction.ConclusionAlthough advocated, paediatric advance care planning is a complex process, commonly triggered by the physical deterioration and rarely underpinned by support tools. The COM-B framework was useful in identifying fundamental differences in initiation behaviour; however, further research is required to explore the complexity of initiation behaviour and the system within which the care is being delivered to identify influences on initiation.

Project description:BACKGROUND:To improve the quality of advance care planning (ACP) in primary care, it is important to understand the frequency of and topics involved in the ACP discussion between patients and their family physicians (FPs). METHODS:A secondary analysis of a previous multicenter cross-sectional observational study was performed. The primary outcome of this analysis was the frequency of and topics involved in the ACP discussion between outpatients and FPs. In March 2017, 22 family physicians at 17 clinics scheduled a day to assess outpatients and enrolled patients older than 65?years who were recognized by FPs as having regular visits. We defined three ACP discussion topics: 1) future decline in activities of daily living (ADL), 2) future inability to eat, and 3) surrogate decision makers. FPs assessed whether they had ever discussed any ACP topics with each patient and their family members, and if they had documented the results of these discussions in medical records before patients were enrolled in the present study. We defined patients as being at risk of deteriorating and dying if they had at least 2 positive general indicators or at least 1 positive disease-specific indicator in the Japanese version of the Supportive and Palliative Care Indicators Tool. RESULTS:In total, 382 patients with a mean age of 77.4?±?7.9?years were enrolled, and 63.1% were female. Seventy-nine patients (20.7%) had discussed at least one ACP topic with their FPs. However, only 23 patients (6.0%) had discussed an ACP topic with family members and their FPs, with the results being documented in their medical records. The topic of future ADL decline was discussed and documented more often than the other two topics. Patients at risk of deteriorating and dying discussed ACP topics significantly more often than those not at risk of deteriorating and dying (39.4% vs. 16.8%, p?<?0.001). CONCLUSION:FPs may discuss ACP with some of their patients, but may not often document the results of this discussion in medical records. FPs need to be encouraged to discuss ACP with patients and family members and describe the decisions reached in medical records.

Project description:BackgroundIn acute-care hospitals, patients treated in an ICU for surgical reasons or sudden deterioration are treated in an outpatient ward, ICU, and other multiple departments. It is unclear how healthcare providers are initiating advance care planning (ACP) for such patients and assisting them with it. The purpose of this study is to clarify healthcare providers' perceptions of the ACP support provided to patients receiving critical care in acute-care hospitals.MethodsA cross-sectional study was conducted using questionnaires. In this study, 400 acute-care hospitals with ICUs in Japan were randomly selected, and 1490 subjects, including intensivists, surgeons, ICU nurses, surgical floor nurses, and surgical outpatient nurses, participated. Survey items examined whether ICU patients received ACP support, the participants' degree of confidence in providing ACP support, the patients' treatment preferences, and the decision-making process, and whether any discussion was conducted on change of values.ResultsResponses were obtained from 598 participants from 157 hospitals, 41.4% of which reportedly supported ACP provision to ICU patients. The subjects with the highest level of ACP understanding were surgeons (45.8%), and differences in understanding were observed across specialties (P < 0.001). Among the respondents, physicians and nurses expressed high levels of confidence in providing ACP support to patients requiring critical care. However, 15.2% of all the subjects mentioned that they would not attempt to resuscitate the patients. In addition, 25.7% of the participants handed over patients' values to other departments or hospitals, whereas 25.3% handed over the decision-making process.ConclusionsAmong the participating hospitals, 40% provided ACP support to patients receiving critical care. The low number is possibly because support providers lack understanding of the content of patients' ACP or about how to support and use ACP. Second, it is sometimes too late to start providing ACP support after ICU admission. Third, healthcare providers differ in their perception of ACP, widely considered an ambiguous concept. Finally, in acute-care hospitals with different healthcare settings, it is necessary to confirm and integrate the changes in feelings and thoughts of patients.

Project description:Background Shared decision-making provides an approach to discuss advance care planning in a participative and informed manner, embodying the principles of person-centered care. A number of guided approaches to achieve shared decision-making already exist, such as the three-talk model. However, it is uncertain whether daily practice methods in nursing home wards for persons with dementia comply with the underpinnings of this model. It is also uncertain whether professionals consider shared decision-making to be important in this context, and whether they perceive themselves sufficiently competent to practice this approach frequently. Methods The study has a cross-sectional design, with 65 wards (46 Belgian nursing homes) participating in the study. We compared nursing home professionals’ and residents’ perspectives on the level of shared decision-making during advance care planning conversations with ratings from external raters. Residents and professionals rated the level of shared decision-making by means of a questionnaire, which included the topic of the conversation. External raters assessed audio recordings of the conversations. Professionals filled in an additional self-report questionnaire on the importance of shared decision-making, their competence in practicing the approach, and with what frequency. Results At ward level, professionals and residents rated the average achieved level of shared decision-making 71.53/100 (??=?16.09) and 81.11/100 (??=?19.18) respectively. Meanwhile, raters gave average scores of 26.97/100 (??=?10.45). Only 23.8% of residents referred to advance care planning as the topic of the conversation. Professionals considered shared decision-making to be important (x?=4.48/5, ??=?0.26). This result contrasted significantly with the frequency (x?=3.48/5, ??=?0.51) and competence (x?=3.76/5, ??=?0.27) with which these skills were practiced (P?<?0.001). Conclusions Residents with dementia are grateful when involved in discussing their care, but find it difficult to report what is discussed during these conversations. Receiving more information about advance care planning could provide them with the knowledge needed to prepare for such a conversation. External raters observe a discrepancy between the three-talk model and daily practice methods. Training programs should focus on providing professionals with better knowledge of and skills for shared decision-making. They should also promote team-based collaboration to increase the level of person-centered care in nursing home wards for persons with dementia.

Dataset Information

Measuring engagement in advance care planning: a cross-sectional multicentre feasibility study.

Publications

Measuring engagement in advance care planning: a cross-sectional multicentre feasibility study.

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