Wishes Of Patient Research Articles

Structured Early Advanced Care Planning Outcomes for Patients with High Grade Glioma (S17.006)

<h3>Objective:</h3> To assess the impact of integrating structured early advanced care planning (SEACP) into care for patients with malignant glioma (MG). <h3>Background:</h3> SEACP is under-utilized in cancer and critical in MG due to prognosis, progressive cognitive impairment and patient autonomy. <h3>Design/Methods:</h3> Providers underwent training and used checklists to conduct SEACP visits that included patients and caregivers. We performed an IRB-approved retrospective analysis of 40 SEACP visits over 2 years. We reviewed documentation of SEACP and evaluated impact on adherence to end-of-life quality measures (EOLQM) and advanced care planning (ACP) documentation. Chi-square and t-tests were used to compare outcomes to a published pre-SEACP cohort from our institution. Qualitative data regarding patient and provider experience was analyzed using thematic content analysis. <h3>Results:</h3> All SEACP visits were conducted by advanced practice providers or registered nurses. 54% were tele-visits. Topics discussed included: existential concerns (85%), ACP documents (81%), clinical concerns (77%), and patient values (74%). Patients who completed SEACP (n=40) were more likely to have ACP documented than patients in pre-SEACP cohort (85% vs. 44%; p&lt;0.05), to have completed ACP documents themselves rather than by a proxy (81% vs. 55.0%; p&lt;.01) and higher hospice enrollment &gt; 7 days before death (89% vs. 70.0%; p&lt;.05). Evaluation of qualitative data revealed that 100% of patients found SEACP to be helpful in decision making. 75% of caregivers agreed that “I understand my loved one’s illness better after this visit” and 100% of providers agreed SEACP “improved understanding of patient wishes.” <h3>Conclusions:</h3> Our findings suggest that SEACP is effectively performed by non-physician providers and by telemedicine. SEACP improved ACP documentation, patient involvement in ACP decisions and EOLQM while creating a forum to discuss end of life concerns. Patients, caregivers and providers all viewed SEACP positively. <b>Disclosure:</b> Mrs. Pescatello has nothing to disclose. Dr. Mohile has nothing to disclose. Ms. Serventi has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Novocure. Mrs. Sayers has nothing to disclose. Mrs. Behr has nothing to disclose. Dr. Hemminger has nothing to disclose. Dr. Hardy has received research support from Del Monte Institute for Neuroscience.

Efficacy and safety of early treatment of patients with skin psoriasis and axial arthritis with IL-17 inhibitors

BACKGROUND: On average, within 7 years from the debut of skin psoriasis, patients may develop psoriatic arthritis, characterized by a chronic, relapsing progressive course. Early manifestations of psoriatic arthritis may be axial lesions presenting with inflammatory back pain. Currently, many experts are raising the topic of early prescription of genetically engineered biological drugs for axial lesions in order to prevent disability. Members of the GRAPPA expert group (Group for Research and Assessment of Psoriasis and Psoriatic Arthritis) currently do not provide specific recommendations for the treatment of axial lesions in psoriatic arthritis. The most commonly used regimens are those for axial spondyloarthritis and ankylosing spondylitis. There are also no treatment regimens for early manifestations of axial lesions in patients with smooth skin psoriasis without an established diagnosis of psoriatic arthritis. All regimens consider axial lesions in patients who have already been diagnosed with psoriatic arthritis. Thus, it is necessary to form interdisciplinary standardized protocols for the management of such patients.&#x0D; AIM: to investigate the efficacy and safety of IL-17 inhibitors in axial lesions in patients with skin psoriasis.&#x0D; MATERIALS AND METHODS: A prospective non-interventional comparative multicenter study was conducted in parallel groups of patients with smooth skin psoriasis (n=87). To study the effectiveness of the developed method of therapy, the formation of comparison groups is provided. 3 variants of therapy were analyzed: IL-17A inhibitors (n=21; group 1, main); methotrexate (n=35; group 2, comparison); standard desensitizing therapy was used in group 3 (n=31; control). The distribution into groups was carried out taking into account the severity, prevalence of the skin process (according to PASI, BSA), the quality of life of the patient (according to DLQI), the patient's wishes and the patient's ability to purchase genetically engineered biological drugs.&#x0D; RESULTS: According to our results, the use of IL-17A inhibitors shows high efficiency: by week 52, 100% of patients reached the level of PASI 75, 90.5% ― PASI 90 and 85.7% ― PASI 100, NAPSI 100 (Nail Psoriasis Severity Index) was observed in 71.4% patients. All patients reported a reduction of pain at 12, 24 and 52 weeks with a mean BASDAI of 5.9 (SD=2.3), 4.1 (SD=1.3), and 2.7 (SD=0.9), respectively. It was found that 90.5% of patients achieved ACR 20 by the end of the study at week 52. The majority of patients (85.7%) achieved remission or low DAPSA disease activity after 24 weeks of therapy. The mean ASDAS at 12, 24, 52 weeks was 3.07 (0.9), 2.2 (1.0), and 2.3 (0.9), respectively.&#x0D; CONCLUSIONS: Thus, in patients with skin psoriasis and axial lesions, it is recommended to make the earlier prescription of biologic treatment from the group of IL-17 inhibitors in order to prevent the development of severe forms of psoriatic arthritis and human disability.

In the thicket of fears, doubts, and murky facts: some reflections on treatment modalities for endometriosis-associated pain.

Endometriosis-associated pain can be managed by either surgery or hormonal therapy. The final decision as to which treatment modality to take is based on efficacy and possible complications of different treatment modalities, risk of recurrence, and the patient's wishes and preferences. But in the thicket of fears, doubts, and murky facts, the choice may ultimately be the trade-off between irrational fears and ignorance versus scientific evidence. We elaborate some pros and cons of the two treatment modalities and highlight some notable downsides of hormonal therapy, in particular the possible yet unquantified risk of long-term hormonal therapy for malignant transformation, perhaps with the only exception of combined oral contraceptives. Thus, when discussing with patients, we advocate the approach of discussing the advantages and disadvantages of all treatment options in detail, accounting for the known pros and cons with a full understanding of the predictive irrationality of human beings. For endometriosis-associated pain, surgery is definitely not a failure of medicine but, rather, a viable option, especially given the recently surfaced undercurrent of wariness and dissatisfaction with the current hormonal drugs among patients with endometriosis. Above all, there is a pressing need to fill the knowledge gap of perioperative interventions intended to reduce the risk of recurrence and to fulfill the demand for the development of safe and efficacious non-hormonal therapeutics.

Importance of and Approach to Taking a History of Exposures to Occupational Respiratory Hazards.

Occupational respiratory diseases are caused by exposure to respiratory hazards at work. It is important to document those exposures and whether they are causing or exacerbating disease because these determinations can have important impacts on diagnosis, treatment, job restrictions, and eligibility for benefits. Without investigation, it is easy to miss clinically relevant exposures, especially in those with chronic diseases that can have work and nonwork causes. The first and most important step in identifying exposures to respiratory hazards at work is to take an appropriate history. For efficiency, this is a two-step process. An initial quick screening history is done by asking only a few questions. Follow-up questions are asked if there are positive responses to the screening questions or if an occupational etiology is suspected based on the clinical presentation. Electronic health records have promise for facilitating this process. Follow-up to the screening history may include additional questions, evaluating additional sources of information about workplace exposures, and medical testing. Radiographic findings or tests conducted on noninvasive samples or lung tissue can be used as biomarkers. Online resources can be used to learn more about exposures associated with occupations and industries and to see if investigations evaluating exposures were performed in the patient's own workplace. It is important to adhere to the patient's wishes about contacting the employer. With patient consent, the employer can be an important source of information about exposures and, if a problem exists, has an important role in taking corrective action. Consultation for challenging cases is available from a variety of professional and governmental entities. If a clinician identifies a significant public health issue, such as an occupational disease outbreak, it is important to notify relevant public health authorities so that steps can be taken to prevent additional exposures and appropriately care for those already exposed.

On being entirely ordinary

On being entirely ordinary

Factors affecting decision-making for knee arthroplasty in patients with osteoarthritis

ObjectiveIdentifying factors affecting decision-making for knee arthroplasty in patients with knee osteoarthritis is critically important for pain relief, improving in knee function and reaching an optimal outcome. When decision-making is hurried or delayed, surgery may not occur in time, which complicates the surgery and increases its complications. This study was conducted to investigate the factors influencing decision-making for knee arthroplasty. MethodsThis study is a qualitative study and inductive content analysis method. This study enrolled 22 patients undergoing knee arthroplasty selected through purposive sampling. Data were collected through semi-structured in-depth interviews and analyzed using inductive content analysis. ResultsData analysis yielded three categories: hope to return to normal life, encouragement and recommendations, and trust and assurance. ConclusionTo make better treatment-related decisions and achieve better outcomes based on the patient's values and wishes, it is necessary for the treatment team to increase its interactions and establish stronger communication with patients to make their expectations more realistic and help them understand the risks. They should also make efforts to increase patients' knowledge about the advantages and disadvantages of surgery and clarify what is important to them in decision-making.

“My everyday life has returned to normal”- Experiences of patients and relatives with a palliative day care clinic: a qualitative evaluation study

PurposePalliative day care clinics (PDCCs) complement inpatient and home palliative care and provide access to a range of multi-professional services. However, they are not part of standard care in Germany. Yet, international studies show that PDCCs have a positive impact on e.g. quality of life.To evaluate one of the firstPDCCs in Germany (Aschaffenburg-Alzenau (PDCC-AA)) by describing theexperiences, satisfaction, challenges, wishes of patients and relatives andpossible alternatives to treatment in the PDCC.MethodsQualitative study using semi-structuredtelephone interviews. Data was analyzed using qualitative structuring contentanalysis according to Kuckartz with deductive a priori categories and inductivesubcategories.ResultsA total of 31 patients and 38 relativescompleted telephone interviews. The majority of patients were diagnosed with a canceror tumor disease. The following four main themes emerged: (1) alternatives totreatment at the PDCC, (2) symptom relief, (3) sense of security, (4) “everydaylife framing” (normality of everyday life).Participants valued the medicaltreatment (especially for pain), psychosocial support given and having directaccess to a range of services (e.g., wound care and pleural drainage), whilerelatives valued being provided respite services. A sense of security,availability of therapies, and devoted time that healthcare providers spent toexplain e.g., treatment options were mentioned most positively, as well asconfidence in dealing with the illness. As to whether there was an alternativeto treatment in the PDCC, some saw further inpatient stays, the emergency roomor care by general practitioners as options (although not preferred). Patientsexpressed concern that they were not treated and informed according to theirneeds in other care settings.ConclusionsPDCCs may close a gap betweeninpatient and home palliative care. Participants mentioned that hospital stayscan be delayed or even prevented.

Long-term Outcomes of Straight Ileoanal Anastomoses Converted to Ileal Pouch Anal Anastomoses

While ileal pouch anal anastomosis (IPAA) is the recommended way to restore intestinal continuity after total proctocolectomy, straight ileoanal anastomoses (SIAA) are still selectively performed, especially in the pediatric population. In case of SIAA failure, conversion to IPAA is possible, but reports on its outcomes are scarce. We retrospectively analyzed our prospectively collected database on pelvic pouches, and identified patients with a SIAA that was converted to IPAA. Our aim was long-term functional outcomes. Twenty-three patients were included (14 females, median age at SIAA 15 years, median age at conversion to IPAA 19 years). The indication for SIAA was ulcerative colitis in 17 (74%) cases, indeterminate colitis in 2 (9%) cases, and familial adenomatous polyposis in 4 (17%) cases. The indication for IPAA conversion was incontinence/poor quality of life in 12 (52%) cases, sepsis in 8 (35%) cases, anastomotic stricture in 2 (9%) cases, and prolapse in one (4%) case. The majority were diverted at IPAA conversion (22, 96%). Three (13%) patients never had stoma closure, due to patient wishes, failed healing of vaginal fistula, and pelvic sepsis, respectively. After a median follow up of 109 months (28-170), pouch failure occurred in 5 additional patients. Overall pouch survival was 71% at 5 years. Median quality of life was 8/10, of health 8/10, and of energy 7/10. Median satisfaction with surgery was 9.5/10. Conversion of SIAA to IPAA leads to acceptable long-term outcomes and good quality of life, and can safely be offered to patients with problems related to SIAA. IV.

Understanding the Relationships Between Health Care Providers' Moral Distress and Patients' Quality of Death.

Introduction: Moral distress is a commonly recognized phenomenon among health care providers; however, the experience of moral distress by staff caring for patients who die during an acute care hospital stay has not been previously examined. It also remains unclear how the quality of a death may impact moral distress among these providers. Objectives: We sought to understand levels of moral distress experienced by intern physicians and nurses who provided care during a patient's final 48 hours of life, and how the perceived quality of death impacted moral distress. Materials and Methods: We utilized a mixed-method prospective cohort design, surveying nurses and interns following inpatient hospital deaths at an academic safety-net hospital in the United States. Participants completed surveys and answered open-ended questions to evaluate moral distress and the quality of the patient's death. Results: A total of 126 surveys were sent to nurses and interns caring for 35 patients who died, with 46 surveys completed. Overall moderate-to-high levels of moral distress were identified among participants, and we found that higher levels of moral distress correlated with lower perceived quality of death. We identified five themes in our qualitative analysis highlighting the challenges nurses and interns face in end-of-life care, including the following: poor communication, unexpected deaths, patient suffering, resource limitations, and failure to prioritize a patient's wishes or best interests. Conclusions: Nurses and interns experience moderate-to-high levels of moral distress when caring for dying patients. Lower quality of end-of-life care is associated with higher levels of moral distress.

Elevating the patient voice in contraceptive care quality improvement: A qualitative study of patient preferences for peripartum contraceptive care

ObjectivePatient-centeredness is an important indicator of peripartum contraceptive care quality. Prior work demonstrates how care fragmentation, provider biases, and other factors sometimes undermine the patient-centeredness and quality of this care. To guide the design of future quality improvement interventions, we explored patient preferences for peripartum contraceptive care. Study designFor this qualitative study, we recruited a convenience sample of individuals receiving prenatal care at the study site and participating in an online survey about their experience of peripartum contraceptive care during February–July 2020. We conducted individual, in-depth, semistructured interviews to assess patients’ preferences for peripartum contraceptive care. Using inductive and deductive qualitative content analysis, we evaluated interview data for patient preferences for peripartum contraceptive counseling and organized preferences into domains to inform future quality measurement. ResultsInterviews (lasting 7–26 min) included 21 postpartum individuals, who were largely White with high levels of formal education. Many participants described suboptimal care experiences characterized by insufficient information, inadequate centering of patient values, and, occasionally, disrespectful care. We identified four key themes describing patients’ desire for (1) comprehensive, anticipatory information from one’s peripartum provider; (2) counseling and decision-making that (a) prioritize patient preferences and values and (b) avoid pressure; (3) care that respects patient feelings and wishes; and (4) provider responsiveness to individual patient preferences regarding timing and frequency of counseling. ConclusionsWe newly identify four key domains of patient preferences for peripartum contraceptive care. Additional research is needed to understand peripartum contraceptive care preferences among diverse patient populations. Future research should develop validated measures for evaluating the patient experience of peripartum contraceptive care at scale, as part of ongoing efforts to improve the quality and respectfulness of peripartum care. ImplicationsPatients want peripartum contraceptive care to provide comprehensive, anticipatory information; elicit and respond to their counseling and decision-making preferences; and demonstrate respect for their wishes.

N21 Patient education is (sometimes) better than cure

Abstract Background About half of all patients with Inflammatory Bowel Disease (IBD) experience Extra Intestinal Manifestations (EIMs)1. One of these EIMs are non-inflammatory joint complaints. Preliminary research2 has shown that IBD patients treated by Amsterdam university medical centers (UMC) experience a lack in pre-symptomatic patient education regarding these complaints. The patients interviewed in this preliminary study were all unaware of the possible development of these joint complaints in addition to their IBD. Methods A practice-oriented study was set up. Both qualitative and quantitative research techniques were used. Literature research into innovations for patient education was performed. Questionnaires were distributed among IBD patients in Amsterdam UMC to identify wishes and needs regarding patient education about non-inflammatory joint complaints. To determine how this education is provided elsewhere, questionnaires were distributed among caregivers of IBD patients in other Dutch hospitals. Results According to literature research, verbal education, information leaflets, informational websites, group education and educational programs contribute to an increased knowledge of disease in IBD patients. Surveyed IBD patients from Amsterdam UMC wish to be informed about non-inflammatory joint complaints via verbal education or by information leaflets and/or internet. Of the surveyed caregivers in other Dutch hospitals, the majority do not have educational materials and/or methods about (non-inflammatory) joint complaints. Information is given verbally by most of them. The innovation is an information leaflet entitled 'Joint complaints in IBD'. This can be used to support verbal patient education and can be used as a reference work. The leaflet is also offered via internet. Conclusion Offering the information leaflet 'Joint complaints in IBD' is an appropriate innovation that meets the wishes of IBD patients in Amsterdam UMC with regard to patient education about non-inflammatory joint complaints. The leaflet is preferably used to support verbal patient education and is subsequently given to the IBD patient as a reference work or offered via the internet. Content optimization is recommended. Afterwards, a pilot implementation can be set up. After implementation, further research is recommended to investigate whether the innovation actually contributes to optimization of pre-symptomatic patient education about non-inflammatory joint complaints.

Ethical Issues faced by Home Care Physicians and Nurses in Japan and their Ethics Support Needs: a Nationwide Survey.

This study aimed to identify the ethical issues faced by home care physicians and nurses, and the support they require. It was conducted in collaboration with the Japanese Association for Home Care Medicine from November to December 2020. An e-mail was sent to 2785 physicians and 582 nurses who are members of the society, requesting their participation in a web-based survey targeting physicians and nurses with practical experience in home care; 152 physicians and 53 nurses responded. Home care physicians and nurses face ethical issues, some of which are that "the patient's wishes cannot be reliably understood owing to their impaired decision-making capacity" and "there is disagreement between the patient and their family members over the necessary healthcare." The respondents sought "experience with, and insight into, healthcare ethics" and "home care" from people with whom they would consult on ethical issues, but at the time of the actual consultation, those individuals were the main healthcare professionals involved with the patient. In addition, the respondents desired to have "multidisciplinary discussions in the community," "participation of healthcare ethics experts at meetings," and "meetings held by healthcare ethics experts" to discuss specific cases. Given these results and the history of healthcare ethics education in Japan-which has been implemented mostly for healthcare providers-we conclude that it is important for academic societies that offer healthcare ethics education to healthcare providers and regional core hospitals with ethics support resources to collaborate to provide ethics consultation services in the community.

Opioids and constipation therapy in the last week of life: Their impact on patients, caregivers, and the location of death.

The use of opioids to control pain at the end of life may cause constipation, a symptom that can negatively influence the well-being of patients and caregivers. The main aim of this study was to evaluate the impact of constipation on symptomatic control and patients' overall quality of life at this stage. A particular focus was placed on opioids. We also intended to investigate whether constipation and caregiver fatigue is related to the place of death (hospital vs home). The approach of 121 patients followed in 2021 in their last week of life by a home team specialized in palliative care was analyzed in an observational, retrospective, non-interventional study. The patients were followed up for an average of 39.7 days. A total of 82.6% wished to die at home, which occurred in 74% of the cases. The constipation prevention protocol reduced constipation by 55.1%. It seems that morphine is more related with constipation and tapentadol seems to reduce constipation induced by opioids. Patients tended to die in hospitals when their caregivers were exhausted; however, it was not possible to determine a cutoff point using the Zarit scale, which was used to assess caregiver burden. Constipation in the last week of life does not seem to influence the well-being of patients or their caregivers significantly and the individualization of intensive treatment of constipation is needed. Different opioids have different probabilities of causing adverse effects such as constipation. Future special support mechanisms can be created and activated for the most tired caregivers to avoid exhaustion and promote death at home, if that is the patient's will.

1343 ADVANCE CARE PLANS (ACP) IN SECONDARY CARE: WHAT ARE THE PATIENT OUTCOMES FOLLOWING DISCHARGE FROM HOSPITAL WITH AN ACP?

Abstract Introduction Treatment escalation plans are discussed in hospital but not always communicated to community care on discharge, leading to avoidable admissions to hospital and hospital deaths which may be not what the patient wants. The project aimed to review what happened to patients discharged from hospital with an ACP over a 12-month period. Method Older person service (OPS) inpatients were identified for ACP discussions, using Clinical frailty score, presence of life limiting conditions, co-morbidities, significant decline. Over a 12-month period 155 ACP's were completed using the ACP document on the Trust electronic record (EPR), including the level of appropriate care and preference for location of on-going care. On discharge copies of the ACP were sent with the patient, to their GP and the ambulance service. EPR was used to review patients up to 12 months post discharge. Results Of patients with an ACP; the wish of all patients was to remain out of hospital and be cared for in the community; 63% were discharged to care home setting; 19% were readmitted as inpatients (43.7% Trust OPS/no ACP readmissions); 8% of patients died before discharge; 92% of patients who died after discharged, died out of hospital (47.5% Trust OPS/no ACP deaths); 25% were still alive at 12 months. The process of completing the ACP and communicating the ACP was found to be long and not user friendly with multiple steps and needed refining. Conclusion ACP's offer support to facilitate patient's wishes. The use of ACP's in secondary care benefits patients on discharge, it reduces readmissions and in-hospital deaths. The current ACP document is lengthy and requires simplifying. This has led to a work group to redevelop the ACP into a more user friendly/shareable document, which will encourage on-going use of ACP's and can be adopted throughout the Trust.

1291 DO PATIENTS UNDERSTAND THEIR RESPECT FORMS? A QI PROJECT REVIEWING PHRASES USED AND WHETHER THEY ARE MEANINGFUL TO PATIENTS

Abstract Background Hospital based Quality Improvement Project focusing on adapting language used on Recommended Summary Plan for Emergency Treatment and Care (ReSPECT) forms to improve patient understanding. Introduction ReSPECT forms have been used to document patient wishes and appropriate escalation of treatment in our hospital since 2019. There continues to be a lack of understanding of phrases used amongst both patients and healthcare professionals; the hospital receives regular complaints. This project explored patients’ perceptions of language used and their thoughts on the ReSPECT discussion, to better guide discussions and documentation. Methods A questionnaire collecting qualitative and quantitative data was performed with 24 patients aged between 59-95 years old with ReSPECT forms on a medical ward (Geriatrics/ Endocrine). Results The phrases ‘DNACPR’ and ‘Not for ITU’ were understood by 5/24 patients (21%), ‘Ward based ceiling of care’ was understood by only 1/24 (4%) and ‘prioritising comfort care’ understood by 8/24 patients (34%). Only 6/24 (25%) of patients said they were a ‘little upset’ by their admission conversation about ReSPECT and no patients surveyed were ‘very upset’. Conclusions This first QI cycle found that overall, most patients did not understand the language commonly used on ReSPECT forms, particularly ‘ward-based ceiling of care’. The majority were not upset by the ReSPECT conversation, so a fear of upsetting the patient should not be a barrier to having a clear discussion. The next step in our QI work will be to explore phrases that are better understood by patients and then feedback findings so that we can develop a digital ReSPECT form with drop down options for phrases better understood by patients to describe ceilings of care.

Maintenance of efficacy and its predictors after discontinuation of eltrombopag in adults with primary immune thrombocytopenia

Objective: To determine the efficacy of eltrombopag for primary immune thrombocytopenia (ITP) in adults and the predictive factors for treatment-free response (TFR) . Methods: Clinical data of adults with ITP who received eltrombopag from June 14, 2013 to May 31, 2021 in the Hematology Department of Ruijin Hospital affiliated with Shanghai Jiao Tong University Medical College were retrospectively analyzed. The initial dose of eltrombopag was 25 mg/d, and the maximum dose was 75 mg/d; the dose was adjusted to maintain the platelet count to within 50-150×10(9)/L. Treatment was discontinued according either to the protocol, on the patient's wishes or doctor's judgment (prescription medication), or based on clinical trials. The efficacy of eltrombopag and factors for TFR among patients who achieved complete response and those who discontinued treatment were analyzed. Results: Overall, 106 patients with ITP (33 men and 73 women) were included in the study. The median age of patients was 50 (18-89) years. There were 2, 10, and 94 cases of newly diagnosed, persistent, and chronic ITP, respectively. The complete response rate was 44.3% (47/106), the response rate was 34.0% (36/106), and the overall response rate was 78.3% (83/106). Meanwhile, 83 patients who responded to treatment discontinued eltrombopag; of these, 81 patients were evaluated. Additionally, 17 patients (21.0%) achieved TFR. The median follow-up duration of patients who achieved TFR was 126 (30-170) weeks. The recurrence rate was 17.6% (3/17), and the relapse-free survival rate was 76.5%. The results of univariate analysis revealed that non-recurrence after discontinuation of other treatments for ITP (P=0.001), and platelet count and eltrombopag dose of ≥100×10(9)/L (P=0.007) and ≤25 mg/d (P=0.031), respectively, upon discontinuation of eltrombopag were predictors of TFR; these effects were attributed to prolonged effective duration of eltrombopag. Multivariate analysis showed that there was a correlation between non-recurrence and prolonged effective duration after discontinuation of other treatments for ITP (P=0.002) . Conclusion: Eltrombopag is effective for patients with ITP as it can result in TFR. Predictors for TFR include non-recurrence after discontinuation of concomitant ITP treatment, and platelet count and eltrombopag dose of ≥100 × 10(9)/L and ≤25 mg/d upon discontinuation of treatment, respectively.

Feasibility of a standardized family participation programme in the intensive care unit: A pilot survey study.

To assess the feasibility and applicability of a standardized programme to facilitate family participation in essential care activities in the intensive care unit. Pilot study with a cross-sectional survey design. A standardized programme to facilitate family participation in essential nursing care activities was implemented in intensive care units of three hospitals in the Netherlands from November 2018 until March 2019. The feasibility and applicability of the programme were assessed with surveys of the patients, relatives and healthcare providers. Three intensive care units successfully implemented the standardized programme. Three patients, ten relatives and 37 healthcare providers responded to the surveys. Patients appreciated family participation and recognized that their relatives liked to participate. Relatives appreciated being able to do something for the patient (80%) and to participate in essential care activities (60%). The majority of relatives (60%) felt they had sufficient knowledge and skills to participate and did not feel obliged nor uncomfortable. Healthcare providers felt they were trained adequately and motivated to apply family participation; application was perceived as easy, clear and relatively effortless according to the majority. According to 68% of the healthcare providers, most relatives were perceived to be capable of learning to participate in essential care activities. Some healthcare providers felt uncertain about the patient's wishes regarding family participation, with some indicating the behaviours of relatives and patients discouraged them from offering family participation. Use of a standardized programme to facilitate family participation in essential care activities in the intensive care unit seems feasible and applicable as determined by relatives and healthcare providers.

S-14-5: JSH GUIDELINE FOR THE MANAGEMENT OF HYPERTENSION 2019 (JSH2019) ∼ CONCEPT AND SUBSEQUENT CHALLENGES ∼

Hypertension Treatment Guidelines 2019 (JSH2019) is based on JSH2014 and complies with Minds’ clinical practice guideline creation manual, and adopts a policy of adding new evidence. For this reason, we have newly ‘ extracted clinical issues, raised them as clinical questions (CQ), conducted a comprehensive systematic review (SR), created a body of evidence, and made recommendations.’. Since conducting SR appropriately requires a huge amount of labor, we decided to form an SR team centered on young members of the Society and proceed with the work while receiving guidance from a support team of epidemiological experts. In particular, we hope that SR will lead to the development of young people who will lead the future, and we also aimed to submit the results of SR to Hypertens Res. In the end, we were able to create 17 CQs. Furthermore, in JSH2019, we calculated the absolute risk of CVD in Japanese people based on the JALS and Hisayama-town studies, and used it for risk stratification. Hypertension was defined as a blood pressure value of 140/90 mmHg or higher for which the efficacy of antihypertensive drugs has been proven in patients who are not at high risk. Evidence was also emphasized for blood pressure reduction goals. To the low-risk and the moderate-risk patients with elevated blood pressure, we recommended to achieve the target blood pressure control by modifying lifestyle habits without using antihypertensive drugs. We also asked patient groups to review the guidelines, aiming to reflect the values and wishes of patients. As we approach the third year since the publication of JSH2019, we would like to consider the remaining issues. There are still many patients whose blood pressure is not properly controlled, and many of whom are not aware that they have hypertension. Improvements in blood pressure control among the population are desired through countermeasures against clinical inertia and population tactics. This guideline was created with the aim of preventing CVD and improving patient prognosis, as described above. However, in a super-aging society, patients’ hopes are not necessarily to improve only the prognosis of life. There are many issues that need to be addressed in future guideline revisions, such as reconsidering recommendations for the elderly by appropriately understanding the ‘values and wishes of patients’ according to their age.

How the doctor-patient relationship influences the perception of the diagnosis of pancreatic cancer

Background: The diagnosis of pancreatic cancer is usually associated with a poor prognosis. It is mostly diagnosed late and at an advanced stage. A cure is therefore not possible in most cases. Accordingly, the doctor-patient relationship (DPR) in pancreatic cancer is of particular importance: as the primary advisor, the treating physician is responsible not only for making the diagnosis but also for deciding whether pancreatic cancer should be treated curatively, neo-adjuvantly, or palliatively. At best, the decision is made following the patient's beliefs and wishes.

Legal issues in end-of-life care

End-of-life (EOL) care is a multidisciplinary approach to provide 'whole person care' to individuals with advanced, progressive, incurable or life-limiting illnesses to prevent or relieve suffering with a goal to reduce suffering as much as possible while respecting the patient's wishes. The focus is on comfort, symptom control and quality of death (QOD) rather than actual treatment or prolonging life. It includes withholding or withdrawing life support treatments and initiating palliative care in terminally ill patients. However, lack of awareness amongst people and healthcare workers and inadequate legal framework are barriers to ensuring good QOD. All these issues result in a prolonged stay of terminally ill patients in intensive care units, high financial costs and emotional stress to the family, resulting in an excessive burden on the healthcare system. EOL care poses numerous legal and ethical problems for physicians. It is critical in therapeutic decision-making to protect the rights, dignity and vigour of all individuals concerned, including the patient's family members and the society. Physicians must comprehend the concepts of relevant legal and biomedical ethics to solve EOL care issues.