Guidelines For Care Management Research Articles

P.047 Survey of caregivers of individuals with NBIAs to identify relevant quality of life outcomes

Background: Neurodegeneration with Brain Iron Accumulation (NBIA) is a heterogenous group of disorders with the common theme of iron accumulation in the basal ganglia. These disorders typically present in childhood with progressive neurodegeneration and neuropsychiatric symptoms. Caring for an individual with NBIAs is intensive, however it is unknown what factors impact caregiver well-being and quality of life. Methods: Common themes were obtained via literature review of quality of life surveys in children with neurological and chronic illnesses. Five domains were addressed: Diagnosis, Communication, Symptom Management, Clinical Experience and Resources/Support. The survey was approved by the Family Advisory Committee at the CHEO Research Institute and the CHEO REB. The survey was distributed via the Rare Connect Platform to Canadian caregivers. Results: Survey responses are being analyzed and will be presented at the CNSF. Within each domain, Likert scales will be analyzed. Domains will be ranked according to the caregiver responses. Conclusions: Results of this survey will assist in developing care management guidelines, resources for families and help with future advocacy for patients and families affected by NBIAs. The results will also help guide future NBIA Canada Family Conferences.

Assessment of Function Limitations in People with Chronic Kidney Disease for Implementation in Clinical Practice

Chronic Kidney Disease (CKD) is a global health problem and a significant contributor to mortality, morbidity and disability from non-communicable diseases (NCD). The current consensus amongst researchers in the field of renal rehabilitation and healthcare practitioners involved in the management of people with CKD, is that physical dysfunction and inactivity are severe and prevalent in all ages and CKD stages compared to normative data. The negative impact of CKD on independence is cumulative, and health interventions and policies should target prevention of deterioration of kidney function and its consequences for physical frailty, disability and ultimately, quality of life. Accurate and feasible assessment of physical function is key for supporting the clinical implementation of current clinical care management guidelines. This overview, therefore, presents the rationale and some key scientific evidence to support the recommendation of physical function measurement tools that reflect function limitations for immediate implementation in clinical practice. Measurement property characteristics of the proposed measurement tools are also summarised in order to support health and exercise professionals in selecting the right tool and in interpreting and evaluating the measured outcomes.

The effects of midwifery care provided to primiparous mothers during the postpartum period on maternal attachment and post-traumatic growth

AimThis study was conducted to determine the effects of midwifery care provided to primiparous mothers during the postpartum period on maternal attachment and post-traumatic growth. MethodThe study was conducted based on a quasi-experimental model with a pre-test/post-test control group. The population of the study was composed of primiparous mothers who gave birth in a public hospital located in eastern Turkey, and the sample consisted of 128 postpartum women (64 women in the control group and 64 women in the experimental group); the sample size was determined via power analysis. Midwifery care was provided to the mothers in the experimental group throughout their hospitalisation in accordance with the Postpartum Care Management Guidelines (PCMG) published by the Republic of Turkey's Ministry of Health. In addition, 3 home visits were carried out between the postpartum 2nd and 5th days, 13th and 17th days and 36th and 42nd days. The mothers in the control group were not subjected to any intervention. The data were collected using a personal information form, the Maternal Attachment Inventory (MAI) and the Post-traumatic Growth Inventory (PTGI). Statistical analyses were conducted using percentage distribution, arithmetic mean, standard deviation, chi-square testing, independent samples t-testing and dependent samples t-testing. ResultsBased on the mean MAI and PTGI pre-test scores, it was determined that the mothers in the experimental and control groups were similar in terms of maternal attachment and post-traumatic growth characteristics (p>0.05). The mean MAI post-test score was 101.85±2.85 in the experimental group and 98.68±5.91 in the control group, and the difference between the groups was statistically significant (p<0.001). The mean PTGI post-test score was 86.21±20.39 in the experimental group and 79.54±22.32 in the control group, and the difference between the groups’ mean scores was statistically significant (p<0.05). The mean post-test score of the PTGI Change in Philosophy of Life subscale was 19.37±6.04 in the experimental group and 16.17±6.83 in the control group, and the difference between the mean scores was statistically significant (p<0.05). ConclusionIt was determined that the midwifery care provided to primiparous mothers during the postpartum period had a positive effect on levels of post-traumatic growth and maternal attachment.

Management of intracranial hypertension following traumatic brain injury: a best clinical practice adoption proposal for intracranial pressure monitoring and decompressive craniectomy. Joint statements by the Traumatic Brain Injury Section of the Italian Society of Neurosurgery (SINch) and the Neuroanesthesia and Neurocritical Care Study Group of the Italian Society of Anesthesia, Analgesia, Resuscitation and Intensive Care (SIAARTI).

No robust evidence is provided by literature regarding the management of intracranial hypertension following severe traumatic brain injury (TBI). This is mostly due to the lack of prospective randomized controlled trials (RCTs), the presence of studies containing extreme heterogeneously collected populations and controversial considerations about chosen outcome. A scientific society should provide guidelines for care management and scientific support for those areas for which evidence-based medicine has not been identified. However, RCTs in severe TBI have failed to establish intervention effectiveness, arising the need to make greater use of tools such as Consensus Conferences between experts, which have the advantage of providing recommendations based on experience, on the analysis of updated literature data and on the direct comparison of different logistic realities. The Italian scientific societies should provide guidelines following the national laws ruling the best medical practice. However, many limitations do not allow the collection of data supporting high levels of evidence for intracranial pressure (ICP) monitoring and decompressive craniectomy (DC) in patients with severe TBI. This intersociety document proposes best practice guidelines for this subsetting of patients to be adopted on a national Italian level, along with joint statements from "TBI Section" of the Italian Society of Neurosurgery (SINch) endorsed by the Neuroanesthesia and Neurocritical Care Study Group of the Italian Society of Anesthesia, Analgesia, Resuscitation and Intensive Care (SIAARTI). Presented here is a recap of recommendations on management of ICP and DC supported a high level of available evidence and rate of agreement expressed by the assemblies during the more recent consensus conferences, where members of both groups have had a role of active participants and supporters. The listed recommendations have been sent to a panel of experts consisting of the 107 members of the "TBI Section" of the SINch and the 111 members of the Neuroanesthesia and Neurocritical Care Study Group of the SIAARTI. The aim of the survey was to test a preliminary evaluation of the grade of predictable future adherence of the recommendations following this intersociety proposal. The following recommendations are suggested as representing best clinical practice, nevertheless, adoption of local multidisciplinary protocols regarding thresholds of ICP values, drug therapies, hemostasis management and perioperative care of decompressed patients is strongly recommended to improve treatment efficiency, to increase the quality of data collection and to provide more powerful evidence with future studies. Thus, for this future perspective a rapid overview of the role of the multimodal neuromonitoring in the optimal severe TBI management is also provided in this document. It is reasonable to assume that the recommendations reported in this paper will in future be updated by new observations arising from future trials. They are not binding, and this document should be offered as a guidance for clinical practice through an intersociety agreement, taking in consideration the low level of evidence.

Assessment of deep brain stimulation candidacy during the COVID-19 pandemic: Lessons learned and future directions for neuropsychologists

Objective Neuropsychological assessment is integral to the pre-surgical deep brain stimulation (DBS) workup for patients with movement disorders. The COVID-19 pandemic quickly affected care access and shifted healthcare delivery, and neuropsychology has adapted successfully to provide tele-neuropsychological (teleNP) DBS evaluations during this time, thus permanently changing the landscape of neuropsychological practice. Method: In this paper, we discuss the lessons learned from the pandemic and we offer care management guidelines for teleNP and in-person evaluations of pre-DBS populations, with exploration of the feasibility of the different approaches for uninterrupted care access. Results: We summarize the strengths and weaknesses of these care models and we provide future directions for the state of clinical neuropsychological practice for DBS programs, with implications for broader patient populations. Conclusions: A better understanding of these dynamics will inform and educate the DBS team and community regarding the complexities of performing DBS neuropsychological evaluations during COVID-19 and beyond.

“They destroyed my life because I do not feel like a man anymore”: An Interpretative Phenomenological Analysis of Men's lived experiences of rape victimization

Over the past three decades, rape victimization has been regarded as a women-only issue, with men regarded as the only offenders. This has resulted in a narrow-focused approach in addressing this scourge where men who could be primary victims are marginalized. This marginalization has also occurred in research, resulting in the paucity of literature on men's experiences of rape victimization in South Africa and globally. The main aim of the study was to explore, analyze and interpret men's lived experiences of rape victimization and the meaning they attached to such experiences. An Interpretative Phenomenological Analysis research design was used to collect and analyze data from a purposive sample of 11 participants, using semi-structured face-to-face interviews. The findings of the study revealed eight superordinate themes and related subordinate themes as follows: unexpected overpowering experience, forceful sexual violations, rape as torture, intense emotions attached to being raped, rape as a permanent emotional scar, negative perceptions of self, rape as something being taken away, and rape as divine punishment. The findings highlight the experiences and meanings which men attach to being raped, thus demonstrating the need to develop men-specific post-rape care management guidelines to support and care for men who are rape victims.

The Frequency and Content of Prenatal Care Determine Birth Place: A Community Based Case-Control Study

High-quality prenatal care services could decrease maternal-neonatal mortality and morbidities. The aim of this study was to compare institutional and unplanned home deliveries with regard to the use and content of prenatal care services. The study was conducted in 2011 with two hundred and twenty-nine mothers with unplanned deliveries at home as study group and 458 mothers having institutional deliveries as controls living in Istanbul. The content of prenatal care was evaluated in accordance with the national ministry of health prenatal care management guidelines and the data was collected by a questionnaire with face to face interview. Women with unplanned deliveries at home use prenatal care services less frequently. Percentage of mothers that had home deliveries and did not use prenatal care services was 16.2% while this was only 3.4% in women having institutional deliveries (P=0.001). Moreover, all parameters of prenatal care were poor in content compared to women with institutional deliveries. Adequate prenatal care services in terms of quantity and quality can promote institutional deliveries.

Consensus Report by the Pediatric Acute Lung Injury and Sepsis Investigators and Pediatric Blood and Marrow Transplantation Consortium Joint Working Committees on Supportive Care Guidelines for Management of Veno-Occlusive Disease in Children and Adolescents, Part 3: Focus on Cardiorespiratory Dysfunction, Infections, Liver Dysfunction, and Delirium

Some patients with veno-occlusive disease (VOD) have multiorgan dysfunction, and multiple teams are involved in their daily care in the pediatric intensive care unit. Cardiorespiratory dysfunction is critical in these patients, requiring immediate action. The decision of whether to use a noninvasive or an invasive ventilation strategy may be difficult in the setting of mucositis or other comorbidities in patients with VOD. Similarly, monitoring of organ functions may be very challenging in these patients, who may have fulminant hepatic failure with or without hepatic encephalopathy complicated by delirium and/or infections. In this final guideline of our series on supportive care in patients with VOD, we address some of these questions and provide evidence-based recommendations on behalf of the Pediatric Acute Lung Injury and Sepsis Investigators and Pediatric Blood and Marrow Transplantation Consortium Joint Working Committees.

Consensus Report by the Pediatric Acute Lung Injury and Sepsis Investigators and Pediatric Blood and Marrow Transplant Consortium Joint Working Committees on Supportive Care Guidelines for Management of Veno-Occlusive Disease in Children and Adolescents: Part 2—Focus on Ascites, Fluid and Electrolytes, Renal, and Transfusion Issues

Even though hepatic veno-occlusive disease (VOD) is a potentially fatal complication of hematopoietic cell transplantation (HCT), there is paucity of research on the management of associated multiorgan dysfunction. To help provide standardized care for the management of these patients, the HCT Subgroup of the Pediatric Acute Lung Injury and Sepsis Investigators and the Supportive Care Committee of the Pediatric Blood and Marrow Transplant Consortium, collaborated to develop evidence-based consensus guidelines. After conducting an extensive literature search, in part 2 of this series we discuss the management of fluids and electrolytes, renal dysfunction; ascites, pleural effusion, and transfusion and coagulopathy issues in patients with VOD. We consider the available evidence using the GRADE criteria.

A Population-Based Care Improvement Initiative for Patients at Risk for Delirium, Alcohol Withdrawal, and Suicide Harm

In a population-based approach, a hospital-wide interprofessional care redesign at Brigham and Women's Hospital (BWH; Boston), was conducted to provide optimal evidence-informed care for patients at risk for delirium, alcohol abuse, and suicide harm (DASH). The initiative involved enhanced screening and the introduction of new care management guidelines and order sets pertaining to the DASH diagnoses. An interprofessional group from medicine, nursing, and psychiatry jointly led a hospitalwide effort for the improvement of care and outcomes of patients presenting with a DASH diagnosis (delirium, alcohol withdrawal, and suicide harm). The care improvement process consisted of four phases: (1) development of guidelines, (2) imple mentation/rollout, (3) integration into practice, and (4) sustainability, including ongoing practice development and evaluation. Implementation outcomes were evaluated using eight parameters-acceptability, adoption, appropriateness, feasibility, fidelity, implementation cost, penetration, and sustainability. Internal billing data and ICD-9-CM [International Classification of Diseases, Ninth Revision, Clinical Modification] diagnostic codes were used to identify the DASH population. Patients were compared pre- and postprogram implementation for fiscal years 2010 through 2013. The average length of stay, reported as the number of midnights in the hospital, remained consistent for DASH patients-9.3-10.0 days (versus 5.3-6.0 days for BWH over all). The DASH readmission rate decreased by 9%-from 15.1% to 13.7%, approaching the overall BWH rate of 13.3%. Close nurse-physician collaboration, including joint leadership and simultaneous rollout for nurses and physicians, contributed to the initiative's effective implementation.

Rights-Based Approach to Human Development: Access to Health Care in Blouberg Municipality, South Africa

South Africa subscribes to universal health care coverage. Health care access has four dimensions: geographic accessibility, availability, financial accessibility and acceptability. Human rights instruments guarantee the right of everyone to health care access. However, the existence of such a right is not necessarily a proof of their actual enjoyment by those who are entitled to them. This study assessed these dimensions. The study used a quantitative approach in which a questionnaire was used. The health care centre is not within a 25 km radius of some of the consumers of health care while the roads are in poor condition, the community cannot afford transport fares. Travelling distance and time; and scarce skills and lack of medication and equipment constitute the demand-side and supply-side barriers respectively to health care access. As such health care users have resorted to using the services of churches and traditional healers. This study recommends a new model of delivery of health that Government should co-ordinate primary health care services in collaboration with churches and traditional healers; commission research into traditional health medicine and healing procedures and protocols of other health care providers; develop policy on cross-referral of patients; improve community participation; set minimum norms and standards for the delivery of alternative health care services; establish health care management guidelines for churches and traditional healers in order to provide health care in an integrated manner. DOI: 10.5901/mjss.2014.v5n8p520

Skeletal Muscle Oxygen Saturation (StO2) Measured by Near-Infrared Spectroscopy in the Critically Ill Patients

According to current critical care management guidelines, the overall hemodynamic optimization process seeks to restore macrocirculatory oxygenation, pressure, and flow variables. However, there is increasing evidence demonstrating that, despite normalization of these global parameters, microcirculatory and regional perfusion alterations might occur, and persistence of these alterations has been associated with worse prognosis. Such observations have led to great interest in testing new technologies capable of evaluating the microcirculation. Near-infrared spectroscopy (NIRS) measures tissue oxygen saturation (StO2) and has been proposed as a noninvasive system for monitoring regional circulation. The present review aims to summarize the existing evidence on NIRS and its potential clinical utility in different scenarios of critically ill patients.

Advanced Pulmonary Hypertension: Considerations for Care Planning at End of Life (427)

Objectives 1. Explain the pathophysiology of and symptoms associated with advanced pulmonary hypertension including the mechanisms of action of medications commonly used for advanced pulmonary hypertension and their impact on symptoms. 2. Discuss the current literature on managing patients with advanced pulmonary hypertension at the end-of-life. 3. Propose a guideline for providing end-of-life care for patients with advanced pulmonary hypertension. The survival of patientswithWorldHealthOrganization functional class IV pulmonary hypertension is less than one year if untreated. Although initiation of prostacyclin analogues improves functional status and survival, class IV pulmonary hypertension remains a terminal illness. Unfortunately, there is little evidence on how best to manage these patients at the end-oflife. This session will use case studies of patients admitted to our MICU on continous IV prostacyclin analogues to discuss the challenges and considerations inherent in providing care to patients dying with advanced pulmonary hypertension. Briefly, we will describe the pathophysiology of advanced pulmonary hypertension including a review of associated symptoms. Next, we will outline the pharmacokinetics of intravenous prostacyclin analogues (epoprostenol and trepostinil) used for patients with class IV pulmonary hypertension, including the impact of these medications on patient symptoms. Given the dearth of literature on end-oflife care for patients with class IV pulmonary hypertension, we will propose general guidelines for medical management by extrapolating from studies examining discontinuation or transitions off of other medications with similar mechanisms (eg, nitric oxide, sildenafil, and prostacyclin) as well as from our own experiences. Finally, we will use these cases to examine various psychosocial challenges associated with patients dying from pulmonary hypertension, including considerations for place of death (eg, hospital setting, home hospice, inpatient hospice). A detailed handout will be provided that outlines our proposed medical management guidelines for care of patients dying from advanced pulmonary hypertension.

Quality of Prenatal Care Services in Karabuk Community Health Center

The aim of the study was to evaluate the quality and quantity of prenatal care services according to gestastional week in Karabuk Community Health Center (CHC). Methods: In this descriptive study 365 pregnant women was selected as sample among 753 pregnant women registered at Karabuk CHC in 18/01/2011. 93.0% of women in the selected sample has been visited in their homes and the face to face interviews were done. The questionnaire was prepared according to Prenatal Care Management Guidelines (PCMG) of Ministry of Health. Findings The number of follow-ups was not complete in 23.7% of 15-24 month, 34.4% of 25-32 month, 52,1% of 33-42 month pregnant women. At least four follow-up visits were completed only in 66,7% of postpartum women. Timing of first visit was after 15th week in 15,6% of women. In follow up visits 62.5% of of women’s height were never measured, in 13,0% the women hearth sound of infants didn’t monitored at least once. Laboratory test numbers were under the level required by PCMG. The delivery conditions weren’t planned in 41,8% of last trimester and postpartum women and training about breastfeeding wasn’t given to 15,5 of the same group. Result In family medicine model in Karabuk CHC developments in number of prenatal follow-up visits were observed, but no substantial improvements were found in quality of prenatal visits. Regular in service trainings shoud be given to family doctors and midwives. The use of prenatal care guideline published by MoH should be increased. Keywords: Prenatal care, pregnancy, timing of first visit, qality of prenatal care

Improving Quality of Care for Patients with Chronic Obstructive Pulmonary Disease

A chronic obstructive pulmonary disease (COPD) project was initiated at 18 primary care clinical practices located in rural areas of northeastern Maine to improve the diagnosis and treatment of patients with COPD through the adoption of evidence-based and best practice clinical guidelines for care management. Clinical guidelines based on the Global Initiative for Chronic Obstructive Lung Disease (GOLD) were implemented by the practices using the Institute for Healthcare Improvement Breakthrough Series learning session model. Practice barriers and patient barriers were identified through focus groups and were then addressed at the learning sessions and through direct contact with the practices. To evaluate the improvements that were a result of the project, changes in clinical practice and patient care were measured pre and post initiative. The greatest improvements in COPD patient care were in the areas of smoking cessation counseling, annual influenza vaccinations, discussion of self-management goals, and diet/exercise counseling. Participants reported that the collaborative nature of the project allowed for mutual learning, provided teams with support to identify and overcome barriers, and fostered teamwork to find solutions to shared problems.

A survey of provision of dietetic services for coeliac disease in the UK

Management guidelines for care of coeliac patients published by the British Society of Gastroenterology (BSG), 2002 recommend that patients should see a dietitian at diagnosis and at least at annual review. In the absence of information on dietetic provision in coeliac disease management in the UK and with surveys in other countries suggesting that patients with coeliac disease gain most information from coeliac support groups (Green et al., 2001), Coeliac UK set out to investigate dietetic services for coeliac patients in the UK. Questionnaires were sent to dietetic departments in the UK via the Regional Managers Group of the British Dietetic Association (BDA) by email. The questionnaires were in two parts, the first was completed by the dietetic manager and the second by the dietitian with the main responsibility for the management of coeliac patients within the department. Over one-quarter of departments reported allocating a maximum of 1 h of dietitians' time per month per 100,000 population to seeing coeliac patients. More hours were allocated to coeliac patients in departments where dietitians had attended coeliac disease training, where dietitians were professional members of Coeliac UK or where coeliac patient care was undertaken by a multi-disciplinary team. There is wide variation in dietetic provision for diagnosed coeliac patients in the UK. The Coeliac UK survey suggests that the current level of dietetic provision is in the region of one-third of what is required according to the BSG management guidelines (British Society of Gastroenterology (BSG), 2002) to provide diagnosed coeliacs with only basic support and annual review.

The Lost Art of the Covenant

Physicians argue that the advent of managed care has turned medicine into a business and that they spend more time learning the art of doing business than practicing medicine, while losing their professional spirit, patient loyalty, autonomy, and income. Medicine was a business before it was a science. Holding on to Hippocratic ideals in a world of on-demand consumers has made the covenantal physician-patient relationship ineffective and devoid of mutual trust. Physicians have argued that trust is time-dependent and a casualty of time-bound managed care guidelines. The author suggests that the principle of trust is not outdated, not exclusively time-dependent, and is still relevant to a modern Hippocrates loyalist. A relationship of trust is built on the style and quality of verbal and nonverbal communication. Trust is not an acquired trait; it is an expectation resulting from an interactive process of human concern and caring.

Empirically Supported Treatment endeavour: A successful future or inevitable debacle?

The Empirically Supported Treatment (EST) endeavour began with and has persisted through prodigious skepticism among practising clinical psychologists. Despite such criticism, however, the advent of managed care guidelines, growing emphasis on biological psychiatry, promotion of scientific interests, and the need for better patient care have validated the importance of this new conception of treatment to the field of psychology. The arguments held by proponents and opponents of the EST movement are delineated and analysed to more fully conceptualise the intricacies beneath the debate. This article is an attempt to clarify the validity and utility of both positions, and to promote understanding of the important implications that follow from endorsement of either perspective. The article closes with a discussion of the ways in which the value of both positions may be integrated into a cohesive and useful model for clinical research and practice, and provides recommendations and projections for future psychotherapy research.

Impact of a diabetes electronic management system on patient care in a community clinic.

The purpose of this study is to evaluate the effectiveness of using a diabetes registry program as part of a comprehensive quality improvement program. Diabetes care management objectives were compared between 82 patients of physicians who participated in the quality improvement program and 63 patients of nonparticipating physicians. Overall completion of management objectives increased 26.1% in the intervention group versus 2.6% in the control group. The intervention was associated with a dramatic improvement in compliance with care management guidelines and is strongly recommended in other community clinic settings.

Ethical conflict associated with managed care: views of nurse practitioners.

Ethical conflict of nurse practitioners (NPs) practicing within a managed care environment has not been systematically examined, yet like physician practitioners, NPs are confronted with daily ethical conflicts. To determine perceptions toward ethical conflict in practice espoused by NPs affiliated with managed care systems and to identify the relationship between selected individual, organizational, and societal/market contextual factors and ethical conflict in practice. Descriptive, cross-sectional, correlational survey of a stratified random sample of 700 NPs licensed and certified to practice in the state of Maryland, conducted from November 2000 to January 2001. A majority of respondents reported being moderately to extremely concerned with managed care. Eighty percent of the sample perceived that it was sometimes necessary to bend managed care guidelines with 61% agreeing that the practitioner must weigh the patient's interest against managed care organizations' interests. The NPs in a staff/group model health maintenance organization (a) were less ethically concerned (p <.001); (b) perceived the ethical environment more positively (p <.001); and (c) had lower ethical conflict scores (p <.001) than NPs in other types of practice settings. Results from this study indicate that NPs are experiencing ethical conflict associated with practicing within a managed care environment; however, NPs in a staff/group model health maintenance organization report these concerns less. Ethical support through intervening strategies (i.e., ethics education and interdisciplinary ethics support systems) may help mitigate the conflict associated with this system of care.