Clinician care priorities and practices in the fourth trimester: perspective from a California survey.

BACKGROUND: Professional societies such as the American College of Obstetricians and Gynecologists (ACOG) promote the idea that postpartum care is an ongoing process where there is adequate opportunity to provide services and support. Nonetheless, in practice, the guidelines ask clinicians to perform more clinical responsibilities than they might be able to do with limited time and resources. METHODS: We conducted an online survey among practicing obstetric clinicians (obstetrician/gynecologists (OB/GYNs), midwives, and family medicine doctors) in California about their priorities and care practices for the first postpartum visit and explored how they prioritize multiple clinical responsibilities within existing time and resources. Between September 2023 and February 2024, 174 out of 229 eligible participants completed the survey, a 76% response rate. From a list of care components, we used descriptive statistics to identify those that were highly prioritized by most clinicians and those that were considered a priority by very few and examined the alignment between prioritized components and recommended care practices. RESULTS: Clinicians were highly invested in the care components that they rated as most important, indicating that they always check these components or assess them when they perceive patient need. Depression and anxiety, breast health/breast feeding issues, vaginal birth complications and family planning counseling were highly ranked components by all clinicians. In contrast, clinicians more often did not assess those care components that infrequently ranked highly among the priority listing, consisting mainly of social drivers of health such as screening and counseling for intimate partner violence, working conditions and food/housing insecurity. In both instances, we found little discordance between priorities and care practices. However, OB/GYNs and midwives differed in some care components that they prioritized highly. CONCLUSIONS: While there is growing understanding of how important professional society recommendations are for maternal-infant health, clinicians face barriers completing all recommendations, especially those components related to social drivers of health. However, what the clinicians do prioritize highly, they are likely to perform. Now that Medi-Cal (Medicaid) insurance is available in California for up to 12 months postpartum, there is a need to understand what care clinicians provide and what gaps remain.

Care Priorities for Individuals with Lower Extremity Amputations: A Patient Delphi Study.

OBJECTIVE: To gather preliminary evidence on short- and long-term care priorities for people with lower extremity amputations. DESIGN: A three-round modified Delphi study using semi-structured interviews. PARTICIPANTS: A convenience sample of 20 adult participants who had undergone lower extremity amputations at a tertiary public hospital. MAIN MEASURE: Consensus on each care priority was defined a priori as an agreement of more than 50%. Semi-structured interviews were conducted to understand the rationales for endorsing the care priorities. RESULTS: Consensus was reached on 24 short-term care priorities and 12 long-term care priorities in the biomedical, practical and psychological and spiritual domains. The rationales for endorsing each of the care priorities generated three themes: preparedness; mental health, psychological and spiritual well-being; and participating in life, with respect and dignity. CONCLUSIONS: Our results highlight the substantial need to improve patient access to education and planning support prior to undergoing limb amputation, and optimising post-amputation rehabilitation programmes, enabling people with amputations to participate in meaningful life roles that provide them with purpose, dignity, and self-respect. The knowledge of care priorities revealed in this study may promote effective patient-centred care and improve clinical outcomes.

An Egalitarian Perspective on Information Sharing: The Example of Health Care Priorities.

In health care, the provision of pertinent information to patients is not just a moral imperative but also a legal obligation, often articulated through the lens of obtaining informed consent. Codes of medical ethics and many national laws mandate the disclosure of basic information about diagnosis, prognosis, and treatment alternatives. However, within publicly funded health care systems, other kinds of information might also be important to patients, such as insights into the health care priorities that underlie treatment offers made. While conventional perspectives do not take this as an obligatory part of the information to be shared with patients, perhaps through viewing it as clinically "non-actionable," we advocate for a paradigm shift. Our proposition diverges from the traditional emphasis on actionability. We contend that honoring patients as equal moral agents necessitates, among other principles, a commitment to honesty. Withholding specific categories of information pertinent to patients' comprehension of their situation is inherently incompatible with this principle. In this article, we advocate for a recalibration of the burden of proof. Rather than requiring special justifications for adding to the standard set of information items, we suggest that physicians should be able to justify excluding relevant facts about the patient's situation and the underlying considerations shaping health care professionals' choices. This perspective prioritizes transparency and empowers patients with a comprehensive understanding, aligning with the ethos of respect for the patient as person.

End-of-life priorities of older adults with terminal illness and caregivers: A qualitative consultation.

BACKGROUND: As older adults approach the end-of-life (EOL), many are faced with complex decisions including whether to use medical advances to prolong life. Limited information exists on the priorities of older adults at the EOL. OBJECTIVE: This study aimed to explore patient and family experiences and identify factors deemed important to quality EOL care. METHOD: A descriptive qualitative study involving three focus group discussions (n = 18) and six in-depth interviews with older adults suffering from either a terminal condition and/or caregivers were conducted in NSW, Australia. Data were analysed thematically. RESULTS: Seven major themes were identified as follows: quality as a priority, sense of control, life on hold, need for health system support, being at home, talking about death and competent and caring health professionals. An underpinning priority throughout the seven themes was knowing and adhering to patient's wishes. CONCLUSION: Our study highlights that to better adhere to EOL patient's wishes a reorganization of care needs is required. The readiness of the health system to cater for this expectation is questionable as real choices may not be available in acute hospital settings. With an ageing population, a reorganization of care which influences the way we manage terminal patients is required.

Do consumer voices in health-care citizens' juries matter?

BACKGROUND: There is widespread agreement that the public should be engaged in health-care decision making. One method of engagement that is gaining prominence is the citizens' jury, which places citizens at the centre of the deliberative process. However, little is known about how the jury process works in a health-care context. There is even less clarity about how consumer perspectives are heard within citizens' juries and with what consequences. OBJECTIVES: This paper focuses on what is known about the role of consumer voices within health-care citizens' juries, how these voices are heard by jurors and whether and in what ways the inclusion or exclusion of such voices may matter. RESULTS: Consumer voices are not always included in health-care citizens' juries. There is a dearth of research on the conditions under which consumer voices emerge (or not), from which sources and why. As a result, little is known about what stories are voiced or silenced, and how such stories are heard by jurors, with what consequences for jurors, deliberation, decision-makers, policy and practice. DISCUSSION AND CONCLUSION: The potential role of consumer voices in influencing deliberations and recommendations of citizens' juries requires greater attention. Much needed knowledge about the nuances of deliberative processes will contribute to an assessment of the usefulness of citizens' juries as a public engagement mechanism.

Leveraging an Electronic Health Record Patient Portal to Help Patients Formulate Their Health Care Goals: Mixed Methods Evaluation of Pilot Interventions.

BACKGROUND: Persons with multiple chronic conditions face complex medical regimens and clinicians may not focus on what matters most to these patients who vary widely in their health priorities. Patient Priorities Care is a facilitator-led process designed to identify patients' priorities and align decision-making and care, but the need for a facilitator has limited its widespread adoption. OBJECTIVE: The aims of this study are to design and test mechanisms for patients to complete a self-directed process for identifying priorities and providing their priorities to clinicians. METHODS: The study involved patients of at least 65 years of age at 2 family medicine practices with 5 physicians each. We first tested 2 versions of an interactive website and asked patients to bring their results to their visit. We then tested an Epic previsit questionnaire derived from the website's questions and included standard previsit materials. We completed postintervention phone interviews and an online survey with participating patients and collected informal feedback and conducted a focus group with participating physicians. RESULTS: In the test of the first website version, 17.3% (35/202) of invited patients went to the website, 11.4% (23/202) completed all of the questions, 2.5% (5/202) brought results to their visits, and the median session time was 43.0 (IQR 28.0) minutes. Patients expressed confusion about bringing results to the visit. After clarifying that issue in the second version, 15.1% (32/212) of patients went to the website, 14.6% (31/212) completed the questions, 1.9% (4/212) brought results to the visit, and the median session time was 35.0 (IQR 35.0) minutes. In the test of the Epic questionnaire, 26.4% (198/750) of patients completed the questionnaire before at least 1 visit, and the median completion time was 14.0 (IQR 23.0) minutes. The 8 main questions were answered 62.9% (129/205) to 95.6% (196/205) of the time. Patients who completed questionnaires were younger than those who did not (72.3 vs 76.1 years) and were more likely to complete at least 1 of their other assigned questionnaires (99.5%, 197/198) than those who did not (10.3%, 57/552). A total of 140 of 198 (70.7%) patients responded to a survey, and 86 remembered completing the questionnaire; 78 (90.7%) did not remember having difficulty answering the questions and 57 (68.7%) agreed or somewhat agreed that it helped them and their clinicians to understand their priorities. Doctors noted that the sickest patients did not complete the questionnaire and that the discussion provided a good segue into end-of-life care. CONCLUSIONS: Embedding questionnaires assaying patient priorities into patient portals holds promise for expanding access to priorities-concordant care.

A scoping review of gaps and priorities in dementia care in Europe.

Dementia is a widely recognized public health priority due to the increasing number of people living with the condition and its attendant health, social, and economic costs. Delivering appropriate care is a challenge in many countries in Europe contributing to unmet needs of people living with dementia. Acute hospital settings are often the default route in pursuit for dementia care due to the lack of or limited knowledge of local service provisions. The care environment and the skillsets in acute hospitals do not fully embrace the personhood necessary in dementia care. Predictions of an exponential increase in people living with dementia in the coming 30 years require evidence-based strategies for advancing dementia care and maximizing independent living. However, the evidence required to inform priorities for enabling improvements in dementia care is rarely presented in a way that stimulates and sustains political interests. This scoping review of the literature drew on principles of meta-ethnography to clarify the gaps and priorities in dementia care in Europe. The review constituted eight papers (n = 8) and a stakeholder consultation involving three organizations implementing dementia care programs in Europe comprising Emmaus Elderly Care in Belgium, Residential Care Holy Heart in Belgium, and ZorgSaam in the Netherlands. Overarching concepts of gaps identified include fragmented non-person-centered care pathways, the culture of dementia care, limited knowledge and skills, poor communication and information sharing, and ineffective healthcare policies. Key areas distinguished from the literature for narrowing the gaps to improve care experiences and the support for people living with dementia care encompass person-centered care, integrated care pathways, and healthcare workforce development. Action for advancing care and maximizing independent living needs to go beyond mere inclusions on political agendas to incorporate a shift in health and social care policies to address the needs of people living with dementia.

Priorities of palliative care: comparison of perspectives of patients and nurses in a haemodialysis ward in Iran.

BACKGROUND: Palliative care is an important branch of nursing care. Patients with end-stage renal disease, owing to the chronic nature of the disease, will require palliative care, with nursing staff being responsible for delivering these services. Understanding the priorities of this type of care from the perspective of patients and nursing staff can be helpful in delivering it effectively and efficiently. This study was conducted to determine and compare palliative care priorities from the perspectives of patients and nursing staff in a haemodialysis ward in Iran. METHOD: This research is a cross-sectional and descriptive-analytic study with a sample size equal to the research population (322 patients and 45 nursing staff) in a haemodialysis ward in Kerman, Iran. Data were collected using two self-administered questionnaires that included demographic information and palliative care priorities. Data were analysed using SPSS19 with central tendency and dispersion indicators (frequency, percentage, mean and standard deviation, Mann-Whitney U-test, Kruskal-Wallis, independent t, ANOVA and one-way ANOVA). The significance level was P<0.05. RESULTS: The mean total score (± standard deviation) of palliative care priorities from the patients' and nurses' perspective was 268.83±3.90 and 271.11±29.76, respectively, which was categorised for both groups as 'high priority'. From the patients' perspective, the highest mean score was obtained from 'supporting patient with insurance concerns', while the lowest mean score was derived from 'managing diarrhoea'. The nurses also believed that 'managing and relief of pain' had the highest priority and 'bloating' had the lowest priority in palliative care. From the perspective of both groups, holistic support and relief of physical disorders had the highest and lowest mean scores, respectively. Further, the mean scores of palliative care priorities did not differ significantly from the perspective of patients and nursing staff in the haemodialysis ward (P=0.68). CONCLUSION: Palliative care is a high priority for both haemodialysis patients and nursing staff and both groups prioritised it similarly. As palliative care has not yet been initiated formally across all treatment centres in Iran, it is necessary to prioritise its inclusion within the renal and haemodialysis wards in Iran and provide further training or education for nurses to ensure they are equipped to deliver effective and informed palliative care.

Prioritising integrated care initiatives on a national level. Experiences from Austria.

INTRODUCTION AND BACKGROUND: Based on a policy initiative and the foundation of the Competence Centre for Integrated Care by the Austrian Social Security Institutions in 2006, the aim of the project was to identify and prioritise potential diseases and target groups for which integrated care models should be developed and implemented within the Austrian health system. The project was conducted as a cooperation between the Competence Centre for Integrated Care of the Viennese Health Insurance Fund and the Institute of Social Medicine of the Medical University Vienna to ensure the involvement of both, theory and practice. PROJECT REPORT: The focus of the project was to develop an evidence-based process for the identification and prioritisation of diseases and target groups for integrated care measures. As there was no evidence of similar projects elsewhere, the team set out to design the prioritisation process and formulate the selection criteria based on the work in a focus group, literature reviews and a scientific council of national and international experts. The method and criteria were evaluated by an expert workshop. DISCUSSION: The active involvement of all stakeholders from the beginning was crucial for the success. The time constraint proved also beneficial since it allowed the project team to demand focus and cooperation from all experts and stakeholders included. CONCLUSION: Our experience demonstrates that, with a clear concept and model, an evidence-based prioritisation including all stakeholders can be achieved. Ultimately however, the prioritisation is a political discussion and decision. Our model can only help base these decisions on sound and reasonable assumptions.