Assisting People With Their Living, Not Their Dying: Health Professionals’ Perspectives of Palliative Care and Opioids in ILD

2021 ◽  
pp. 104990912110186
Author(s):  
Lauren Russo ◽  
Karen Willis ◽  
Natasha Smallwood
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Palliative Care ◽  
Health Care System ◽  
Therapeutic Relationships ◽  
Specialist Palliative Care ◽  
Cross Sectional ◽  
Symptom Palliation ◽  
Care System

Objectives: Interstitial lung disease (ILD) is a debilitating and life-limiting condition, requiring multi-disciplinary care. While guidelines recommend early specialist palliative care referral to improve symptoms and quality of life, few patients access such care towards the end-of-life. This study aimed to explore clinicians’ perspectives regarding specialist palliative care and opioids to understand barriers to optimal care and guide clinical practice improvement initiatives. Methods: A cross-sectional, exploratory, qualitative study was undertaken with Australian respiratory clinicians caring for people with ILD (n = 17). In-depth, semi-structured interviews were audio-recorded, transcribed verbatim and coded. Thematic analysis was undertaken to extrapolate recurring ideas from the data. Results: Four themes were identified: 1) understanding how to improve patient care and support, 2) the need to dispel stigmatized beliefs and misconceptions, 3) the importance of trusted relationships and good communication and 4) the challenges of navigating the health-care system. Participants discussed the need to implement early specialist palliative care and symptom palliation to alleviate symptoms, provide emotional support and augment quality of life. Participants described challenges accessing palliative care and opioids due to stigmatized beliefs amongst patients and clinicians and difficulties navigating the health-care system. Trusted therapeutic relationships with patients and strong inter-disciplinary partnerships with collaborative education and communication were perceived to improve patients’ access to symptom palliation. Conclusion: Specialist palliative care and opioids were believed to improve patients’ quality of life, however, many barriers can make accessing such care challenging. To address these issues, multi-disciplinary collaboration, high-quality communication and trusted therapeutic relationships are crucial throughout the ILD illness journey.

The role of transformative healthcare technology on quality of life during the COVID-19 pandemic

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Mohammad Asif Salam ◽  
Saleh Bajaba
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Saudi Arabia ◽  
Service Delivery ◽  
Health Care System ◽  
Service System ◽  
Content Type ◽  
Care System

Purpose The purpose of this study is to investigate the role of the COVID-19 health-care system quality (HSQ) and its impact on the individual (satisfaction) and social (quality of life [QOL]) outcomes in the context of a transformative health-care delivery system using service-dominant logic (SDL). Design/methodology/approach A sample consisting of 1,008 individuals who have experienced the COVID-19 health-care system was drawn from four different regions of Saudi Arabia using the simple random sampling technique. The survey was conducted using an online survey and 1,008 respondents answered, based on their experience and knowledge of the COVID-19 health-care system. Partial least squares structural equation modeling was applied to test the proposed research model. Findings The study findings suggest that service system satisfaction (SAT) significantly mediates the role of the HSQ in delivering and enhancing the QOL. HSQ also has a significant role to play on the SAT as well as the QOL. These findings contribute to the body of knowledge on SDL in the context of HSQ in understanding the significant role of technologies can play in enhancing service satisfaction and better QOL during a crisis such as COVID-19. This study also improves the understanding of the importance of customer-centricity, real-time visibility through tracking and tracing of service flow, agile decision-making, fewer but better-defined service objectives, and finally shaping mindsets and behaviors of all the relevant parties involved in the HSQ service delivery process. Research limitations/implications One of the major limitations of this study is that, although COVID-19 is an ongoing global pandemic, cross-sectional data were collected in only one country. The findings may not be generalizable across subsequent waves of the pandemic. The best practices of HSQ could be studied around the globe and the results used to support continuous improvement. Originality/value This study advances the understanding of the SDL in the context of a transformative health-care system for a transitional economy by focusing on individual and social well-being during an unexpected crisis such as the COVID-19 pandemic. This study also contributes toward the understanding of the roles of enabling technologies to improve the service delivery system which results in an improved SAT, as well as better QOL for the society at large. Based on SDL this research validates the HSQ model, relevant measures and its overall impact on SAT and QOL in the context of a transformative health-care service system in Saudi Arabia.

scholarly journals Trust in health care systems Arab minority, Jewish immigrant and non-immigrant

2019 ◽  
Vol 29 (Supplement_4) ◽  
Author(s):  
R Pinchas-Mizrachi ◽  
N Daoud
Keyword(s):  
Health Care ◽  
Quality Of Care ◽  
Health Care System ◽  
Census Data ◽  
Jewish Immigrant ◽  
Cross Sectional ◽  
Survey Question ◽  
Arab Minority ◽  
Care System

Abstract Background The objective of this study was to examine the level of trust towards Israel’s health care services (HCS) among Palestinian-Arab minority, Jewish immigrant, and non-immigrant Jewish citizens. Previous studies have shown that minorities and immigrants have less trust in health care system (HCSys), which might represent a barrier in access to, and utilization of HCS. Methods We obtained cross-sectional nationwide census data from the 2017 Social Survey of the Israel Central Bureau of Statistics. We studied levels of trust in the HCSys based on a survey question: ’Do you have trust in the healthcare system?” We conducted logistic regression analysis within and between the study groups to compare levels of trust, after adjustment for different relevant covariates in different models. Results Compared to non-immigrant Jews, Arabs had higher trust in the HCS (odds ratio (OR)=3.08, 95% confidence intervals (CI)=3.06,3.10) and compared to non-immigrant Jews, immigrant Jews had more trust (OR = 1.96, 95% CI = 1.94,1.98), even after adjusting for gender, age, education level, religiosity level, perceived discrimination, self-rated health status, HCS use, and having private health insurance. The variables that predicted trust in the HCSys were different in each ethnic group. Conclusions Contrary to our hypothesis and to previous research, Arab and immigrant Jewish respondents in our study had greater trust in the HCS compared to non-immigrant Jews. This might relate to different expectations among our study groupsof the patient-caregiver relations which might affect the access to and utilization of HCS and finally might affect the quality of care. Key messages Exceptionally, in Israel, the Arab minority and Jewish immigrants have more trust in the health care system compared with non-immigrant Jews. More research is needed to understand how trust among minority groups relates to the patterns of utilization of HCS and raises question regarding the quality of care.

Potential Perils to the Promise of Specialty Palliative Care

2016 ◽  
Author(s):  
Robert M. Arnold
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Health Care System ◽  
Specialist Palliative Care ◽  
The Past ◽  
Seriously Ill Patients ◽  
Seriously Ill ◽  
Generalist Palliative Care ◽  
Care System

Despite the growth of specialty palliative care over the past twenty years, the experience of most seriously ill patients in America has not changed. Although some have argued that the solution to this problem is to increase specialist palliative care (SPC), the author argues that this is a mistake. The growth of SPC may distract attention from solutions that are more likely to improve care for most seriously ill patients. SPC may decrease the quality and quantity of palliative care provided by nonspecialists by allowing the health care system to continue to deny death and “ghetto-izing” and deskilling generalist palliative care. This chapter presents these two arguments and tries to determine what changes are required to ensure that all seriously ill patients receive good palliative care, regardless of who provides the care.

EVALUATION OF QUALITY OF LIFE OF PATIENTS WITH PRIMARY BRONCHIAL ASTHMA IN THE HEALTH CARE SYSTEM

2021 ◽  
Vol 2 (4) ◽  
pp. 51-54
Author(s):  
Dilrabo Alikulova ◽  
◽  
Rixsi Salikhodjaeva
Keyword(s):  
Quality Of Life ◽  
Risk Factors ◽  
Health Care ◽  
Primary Health Care ◽  
Health Care System ◽  
Bronchial Asthma ◽  
Primary Health ◽  
Close Relatives ◽  
Care System

The study of risk factors leading to the development of asthma, conducted in the form of a survey and interviews. 52% of patients with a diagnosis of asthma noted the presence of the disease among close relatives. Among the risk factors leading to bronchial asthma, the most common are pollen and tobacco (49.1%). 59.2% of patients diagnosed with asthma do not follow the diet. Keywords:asthma, nurses, primary health care, prevention, risk factors

scholarly journals Association between Oral Health-Related Quality of Life in People with Rare Diseases and Their Satisfaction with Dental Care in the Health System of the Federal Republic of Germany

2018 ◽  
Vol 15 (8) ◽  
pp. 1732 ◽  
Author(s):  
Marcel Hanisch ◽  
Sabrina Wiemann ◽  
Lauren Bohner ◽  
Johannes Kleinheinz ◽  
Susanne Jung
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Health Care System ◽  
Rare Diseases ◽  
Dental Care ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Care System

Background: The aim of this study was to examine the current dental care situation in Germany from the perspective of those affected by a rare disease, especially concerning their satisfaction with the German dental health care system, and thus assess the relationship between their perspective and their oral health-related quality of life (OHRQoL). Methods: A questionnaire regarding their experiences with the dental assistance and the health care system, such as the OHIP-14, was sent to the member associations of the organization of self-help groups for rare diseases ACHSE e.V. The correlation between OHIP-14 values and patient’s perspective was statistically analyzed by the non-parametric Tau de Kendall test (p < 0.05). Results: There was a statistically significant correlation between the OHIP score and the patient’s perspective regarding dental assistance and health care system (p < 0.05). For those surveyed who were satisfied with the support of the health care system, an average OHIP score of 8.54 ± 10.45 points (range: 0–48) was determined. The group that did not feel sufficiently supported by the health care system had an average OHIP score of 16.07 ± 13.43 points (range: 0–56). Discussion: The majority of respondents with rare diseases are dissatisfied with the German health care system and its support with regard to dental care.

scholarly journals Iron Supplementation Adjunct to Erythropoiesis Stimulating Agents Is Cost Saving for Chemotherapy-Related Anemia in the Era of Biosimilars

Blood ◽  
2014 ◽  
Vol 124 (21) ◽  
pp. 2165-2165
Author(s):  
Monia Marchetti ◽  
Giovanni Barosi ◽  
Paolo Pedrazzoli
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Health Care System ◽  
Intravenous Iron ◽  
Therapeutic Strategies ◽  
Improve Quality ◽  
Care Costs ◽  
Esa Therapy ◽  
Care System

Abstract Background: International guidelines recommend erythropoiesis stimulating agents (ESA) to improve chemotherapy-related anemia (CRA), however, two meta-analyses proved that intravenous iron (II) improves the chance of obtaining a response to ESA by 28% (Gafter-Gvili 2013, Petrelli 2012). Recently, biosimilar ESAs have been approved for CRA, we therefore aimed at comparing the cost-effectiveness of different therapeutic strategies for CRA eventually including II and/or biosimilar ESAs. Methods: A decision model was built comparing 5 strategies: no ESA, brand ESA, brand ESA plus II, biosimilar ESA, biosimilar ESA plus II. Ferric gluconate was assumed to be administered 125 mg per week for 6 weeks overall: 4 infusions were planned in days different from chemotherapy administration. ESA was started at hemoglobin values lower than 11 g/dl. The model included a Markov tree of 13 health states representing hemoglobin level during 26 therapy weeks. Weekly probability of hemoglobin improvement by 1 g/dL was estimated to be 10% with ESA and 15% with ESA plus II but null without ESA. The efficacy of biosimilar ESA was assumed to be the same as ESA. Weekly probability of death was assumed to be 0.4% (Pedrazzoli 2008). The rate of severe events during II infusion was assumed to be 0.2% per week without fatal events. Quality of life at different hemoglobin levels was driven from literature. The economic analysis was run in the perspective of the Health Care System and of the society. II administration was charged €50 and blood transfusion €400. Indirect costs for iron infusions and transfusions planned in days not devoted to chemotherapy was estimated to be €100 for transportation and care-giver time. Based on local data, the per-unit cost of biosimilar ESA versus brand ESA was considered to be 1 in 5.All the analyses were run TreeAgePro2014. Microsimulations and first-order MonteCarlo analysis were run. Results: ESA improve quality-adjusted survival of patients from 14.51 to 14.82 quality-adjusted weeks but II adjunct increased the gain to 15.20 weeks. In the perspective of the health-care system, the management of cancer-related anemia without ESA costs €1,550, while ESA therapy increased the costs by €618 (biosimilars) and €2,933 (brand); ESA plus II increased the costs by €359 and €2,437, respectively. Therefore, the adjunct of II reduced overall health-care costs by €259 in the biosimilar strategy and €496 in the brand ESA strategy. Societal costs similarly increased with ESA use, but the increment was lower: €584 with biosimilar ESA and €2,866 with brand ESA. II allowed to achieve minimal savings in the biosimilar strategy, while savings were €288 in the brand ESA strategy. Savings to the health-care system and to the society were even higher (further €300 to the healthcare-system and €90 to the society) in the hypothesis that liposomial oral iron (30 mg per day for 60 days) achieved similar results as II, at €1 per day charged to the patient (in Italy liposomal iron it is not refunded). Ferric carboxymaltose 750 mg single administration at a cost of €280 might compete with multiple ferric gluconate administrations. Finally, we explored the efffect of threshold hemoglobin: starting ESA at hemoglobin levels lower than 10 g/dl instead of 11 g/dl allowed to reduce health-care costs of ESA therapy by €172, but quality of life was increased by only 0.14 and 0.59 weeks, without and with II, respectively. Conclusions: Rational allocation of health-care resources imposes to choose the most convenient therapeutic strategy among those recommended by practice guidelines. Intravenous iron allows to save health-care and society resources and to improve quality of life by a more rapid hematopoietic response to ESA. Different iron formulations need to be tested in association with ESA in this setting in order to improve the efficiency of avilable therapeutic strategies. Cost-effectiveness analyses should be shared by clinicians and hospital pharmacy to adopt the most effective and efficient therapeutic strategies. Disclosures No relevant conflicts of interest to declare.

scholarly journals Optimization of the quality of life of patients who need palliative care introduction

2020 ◽  
Vol 19 (1) ◽  
pp. 43-52
Author(s):  
Lyudmila A. Ertel
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Palliative Care ◽  
Supportive Therapy ◽  
Integrated Approach ◽  
Legal Regulation ◽  
Spiritual Potential ◽  
The Impact ◽  
Care System

People suffering from chronic progressive diseases of non-infectious and infectious nature need palliative care. When a condition with an unfavorable prognosis occurs, an integrated approach is required, which involves patient care in the medical, psychological, social, and spiritual aspects. This assistance is aimed at improving the quality of life of such patients and implemented in Russia as part of the provision of palliative care, which aims to improve the quality of life of not only the patient himself but also his family members. This study aims to examine the impact of legal regulation of palliative care as well as the medical, psychological, social, and spiritual aspects of palliative care on the quality of life and needs of the patients and their families. Using content analysis and documentary observation, the results regarding the impact of legal, medical, psychological, social, and spiritual aspects combined in the provision of palliative care on the quality of life of patients in need were examined. The study revealed gaps in the legal regulation of the provision of palliative care for patients, particularly HIV-infected patients and those with chronic tuberculosis. As part of optimizing the provision of palliative care, creating a vertically integrated information system for palliative care (VIMIS Palliative) is necessary. To improve the professional stability of medical staff groups providing palliative care and preventing suicidal behavior among patients, health care organizers should improve the mechanisms of psychological interaction among all the participants in the palliative care system. Organizational and methodological approaches in administering anesthesia must be improved, and the knowledge of medical workers on the theoretical foundations of the formation of pain syndromes and the modern methodology for analgesic treatment is required. The organization of the state system of the artificial ventilation of the lungs at home is required with the aim of long-term respiratory support for patients in need. Additionally, further research is needed to determine the impact of nutritional support as a supportive therapy on the course of treatment and the results of palliative care, allowing to optimize the quality of life of patients in need. Optimization of the quality of life of incurable patients depends on the level of palliative care to achieve and maintain the maximum of their physical, psychological, social, and spiritual potential. Furthermore, palliative care should meet the following requirements: early-onset, continuity, succession, comprehensive, phased, and individual approach. Despite certain existing common problems in the implementation of palliative care and the difficulties caused by the restructuring of the health care system in the fight against coronavirus infection, the system is functioning and has the necessary resources to ensure the quality of life and alleviate persistent painful symptoms of patients.

scholarly journals Palliative and End-of-Life Care in the Home in Regional/Rural Victoria, Australia: The Role and Lived Experience of Primary Carers

2021 ◽  
Vol 7 ◽  
pp. 237796082110362
Author(s):  
Elizabeth M. Miller ◽  
Joanne E. Porter ◽  
Rebecca Peel
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Lived Experience ◽  
End Of Life ◽  
Health Care System ◽  
End Of Life Care ◽  
Primary Health Care System ◽  
Life Care ◽  
Specialist Palliative Care ◽  
Care System

Introduction Palliative support services (generalist or specialist) can provide much-needed assistance to carers who are providing palliative and end-of-life care in their homes, but access to such services in regional and rural areas of Australia is poorly understood. Objectives This study aimed to explore the role and lived experience of primary carers who are providing palliative and end-of-life care in the home in regional/rural Victoria, Australia. Methods Nine female participants, of whom six were bereaved between 7 and 20 months were interviewed using a semistructured interview technique. Each interview was audio-recorded, transcribed verbatim, and analyzed thematically. Results Two themes emerged: “ Negotiating healthcare systems” which described the needs for multidisciplinary supports and “ The caring experience” which discussed daily tasks, relationships, mental and physical exhaustion, respite, isolation, medication management, and grief and loss. Findings show that regional/rural carers have an added burden of travel stress as well as feeling overwhelmed, isolated, and physically and emotionally exhausted. Carers would benefit from greater flexibility for short-term respite care. The engagement of specialist palliative care services assisted the participants to navigate the health care system. Some participants did not understand the value of palliative care, highlighting the need for general practitioners to conduct early conversations about this with their patients. Education is needed to build capacity within the primary palliative care workforce, confirming the importance of timely referrals to a specialist palliative care practitioner if pain or symptom control is not effectively managed. Conclusion Providing palliative and end-of-life care in the home is an exhausting and emotionally draining role for unpaid, primary carers. Multiple supports are needed to sustain primary carers, as they play an essential role in the primary health care system.

scholarly journals Diabetic macular edema: a literature review

2020 ◽  
Vol 45 (Suppl.3) ◽  
pp. e020108
Author(s):  
Wellington Fernando Risso ◽  
Matheus Roque Pinheiro ◽  
Leonardo Amarante Pereira ◽  
Júlio Zaki Abucham-Neto ◽  
Glaucia Luciano da Veiga ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Literature Review ◽  
Disease Control ◽  
Macular Edema ◽  
Diabetic Macular Edema ◽  
Health Care System ◽  
Active Population ◽  
Care System

Diabetic Macular Edema is a major cause of visual impairment in economically active population, being responsible for a significant impact in quality of life in the affected population, as well as high costs to the health care system. Over decades, some studies have compared treatments using Laser, Anti-VEGF and intravitreous corticosteroids, establishing protocols to reach effectives therapies. Thus, it is essential an entire understanding of available therapies to reach the goal of disease control, in an individual basis and in a collective health care system, as efficient as possible.

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