scholarly journals Variations in the cost of formal and informal health care for patients with advanced chronic disease and refractory breathlessness: A cross-sectional secondary analysis

2017 ◽  
Vol 31 (4) ◽  
pp. 369-377 ◽  
Author(s):  
Mendwas D Dzingina ◽  
Charles C Reilly ◽  
Claudia Bausewein ◽  
Caroline J Jolley ◽  
John Moxham ◽  
...  
Keyword(s):  
Palliative Care ◽  
Chronic Disease ◽  
Standard Deviation ◽  
Advanced Disease ◽  
Secondary Analysis ◽  
Formal Care ◽  
Cross Sectional ◽  
Informal Carers ◽  
The Cost ◽  
Advanced Chronic Disease

Background: Refractory breathlessness in advanced chronic disease leads to high levels of disability, anxiety and social isolation. These result in high health-resource use, although this is not quantified. Aims: To measure the cost of care for patients with advanced disease and refractory breathlessness and to identify factors associated with high costs. Design: A cross-sectional secondary analysis of data from a randomised controlled trial. Setting/participants: Patients with advanced chronic disease and refractory breathlessness recruited from three National Health Service hospitals and via general practitioners in South London. Results: Of 105 patients recruited, the mean cost of formal care was £3253 (standard deviation £3652) for 3 months. The largest contributions to formal-care cost were hospital admissions (>60%), and palliative care contributed <1%. When informal care was included, the total cost increased by >250% to £11,507 (standard deviation £9911). Increased patient disability resulting from breathlessness was associated with high cost (£629 per unit increase in disability score; p = 0.006). Increased breathlessness on exertion and the presence of an informal carer were also significantly associated with high cost. Patients with chronic obstructive pulmonary disease tended to have higher healthcare costs than other patients. Conclusion: Informal carers contribute significantly to the care of patients with advanced disease and refractory breathlessness. Disability resulting from breathlessness is an important clinical cost driver. It is important for policy makers to support and acknowledge the contributions of informal carers. Further research is required to assess the clinical- and cost-effectiveness of palliative care interventions in reducing disability resulting from breathlessness in this patient group.

scholarly journals A scoping review of palliative care outcome measures in interstitial lung disease

2021 ◽  
Vol 30 (161) ◽  
pp. 210080
Author(s):  
Rebecca A. Gersten ◽  
Amanda C. Moale ◽  
Bhavna Seth ◽  
Judith B. Vick ◽  
Hannah Brown ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Palliative Care ◽  
Physical Health ◽  
Outcome Measures ◽  
Secondary Analysis ◽  
Social Health ◽  
Cross Sectional ◽  
Care Outcome

Interstitial lung disease (ILD) confers a high mortality and symptom burden, substantially impacting quality of life. Studies evaluating palliative care in ILD are rapidly expanding. Uniform outcome measures are crucial to assessing the impact of palliative care in ILD. This scoping review evaluates existing outcome measures in general health-related quality of life (HRQoL), physical health, mental health, social health and advance care planning (ACP) domains in patients with ILD. Articles in English with quantitative assessment of at least one measure of general HRQoL, physical health, mental health, social health or ACP in patients with ILD were included. Searches across three databases yielded 3488 non-duplicate articles. 23 met eligibility criteria and included three randomised controlled trials (RCTs) or secondary analysis of an RCT (13%), three cross-sectional studies or secondary analysis of cross-sectional study (13%), one prospective study (4%) and 16 retrospective studies (70%). Among eligible articles, 25 distinct instruments were identified. Six studies assessed general HRQoL (26%), 16 assessed physical health (70%), 11 assessed mental health (48%), six assessed social health (26%) and 16 assessed ACP (70%). The ability to compare results across studies remains challenging given the heterogeneity in outcome measures. Future work is needed to develop core palliative care outcome measures in ILD.

scholarly journals Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study)

BMC Medicine ◽  
2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Irene J. Higginson ◽  
Deokhee Yi ◽  
Bridget M. Johnston ◽  
Karen Ryan ◽  
Regina McQuillan ◽  
...  
Keyword(s):  
New York ◽  
Palliative Care ◽  
San Francisco ◽  
Informal Care ◽  
Care Quality ◽  
Formal Care ◽  
Care Services ◽  
Informal Carers ◽  
Care Costs ◽  
Country Specific

Abstract Background At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality. Methods Mortality follow-back postal survey. Setting: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco). Participants: Informal carers (ICrs) of decedents who had received palliative care. Data: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG). Analysis: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief. Results We received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66–76 h per week from ICrs for ‘being on call’, 52–55 h for ICrs being with them, 19–21 h for personal care, 17–21 h for household tasks, 15–18 h for medical procedures and 7–10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden. Conclusions Costs to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.

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

2020 ◽  
Vol 26 (1) ◽  
pp. 22-31
Author(s):  
Shima Sarafi ◽  
Mansooreh Azizzadeh Forouzi ◽  
Batool Tirgari
Keyword(s):  
Palliative Care ◽  
Standard Deviation ◽  
Nursing Staff ◽  
Or Education ◽  
Cross Sectional ◽  
Significance Level ◽  
Physical Disorders ◽  
The Mean ◽  
Stage Renal Disease ◽  
End Stage

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

scholarly journals Views of patients with advanced disease and their relatives on participation in palliative care research

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Karolina Vlckova ◽  
Kristyna Polakova ◽  
Anna Tuckova ◽  
Adam Houska ◽  
Martin Loucka
Keyword(s):  
Palliative Care ◽  
Advanced Disease ◽  
Longitudinal Design ◽  
Research Participation ◽  
Structured Interviews ◽  
Cross Sectional ◽  
The Czech Republic ◽  
Care Research ◽  
Support Research ◽  
Significant Factors

Abstract Background Patients with advanced disease may not be invited to participate in research based on the assumption that participation would be too burdensome for them. The aim of this study was to explore how patients with advanced disease and their relatives evaluate their experience with research participation. Method This study used data from two parts of a larger project. The first dataset was a cross-sectional questionnaire study focused on priorities at the end of life. The second dataset used a longitudinal design with structured interviews on prognostic awareness. In both studies, participants evaluated their experience on a 5-point Likert scale and specified their motivation in an open-ended question. Data were collected in 6 hospitals in the Czech Republic with patients with advanced disease and life expectancy less than 1 year and their relatives. Data were analysed using non-parametric tests and thematic analysis. Results First dataset consisted of 167 patients and 102 relatives, and second dataset consisted of 135 patients and 92 relatives (in total, 496 respondents). Results were similar in both datasets, with half of the sample (53%, 48%) scoring neutral, and over 30% of the sample identified their experience as interesting. The most significant factors associated with the evaluation were religiosity (p = 0.001) and the type of diagnosis (p = 0.04). Motivation for participation was to improve care, support research, express own opinion, opportunity to talk and trusting relationship. Conclusions Patients with advanced disease and relatives do not mind participating in palliative care research, and it can be even a positive experience for them.

scholarly journals Views of Patients With Advanced Disease and Their Relatives on Participation in Palliative Care Research

2020 ◽  
Author(s):  
Karolina Vlckova ◽  
Kristyna Polakova ◽  
Anna Tuckova ◽  
Adam Houska ◽  
Martin Loucka
Keyword(s):  
Palliative Care ◽  
Advanced Disease ◽  
Longitudinal Design ◽  
Research Participation ◽  
Structured Interviews ◽  
Cross Sectional ◽  
The Czech Republic ◽  
Care Research ◽  
Support Research ◽  
Significant Factors

Abstract Background: Patients with advanced disease may not be invited to participate in research based on the assumption that participation would be too burdensome for them. The aim of this study was to explore how patients with advanced disease and their relatives evaluate their experience with research participation.Methods: This study used data from two parts of a larger project. The first dataset was a cross-sectional questionnaire study focused on priorities at the end of life. The second dataset used longitudinal design with structured interviews on prognostic awareness. In both studies, participants evaluated their experience on a 5-point Likert scale and specified their motivation in an open-ended question.Setting/participants: Data were collected in 6 hospitals in the Czech Republic with patients with advanced disease and life expectancy less than 1 year and their relatives. Data were analysed using non-parametric tests and thematic analysis. Results: First dataset consisted of 167 patients and 102 relatives, and second dataset consisted of 135 patients and 92 relatives (in total 496 respondents). Results were similar in both datasets with half of the sample (53 %, 48 %) scoring neutral and over 30 % of sample identified their experience as interesting. The most significant factors associated with the evaluation were religiosity (p= 0.001) and the type of diagnosis (p= 0.04). Motivation for participation was to improve care, support research, express own opinion, opportunity to talk and trusting relationship. Conclusion: Patients with advanced disease and relatives do not mind participating in palliative care research and it can be even a positive experience for them.

Blood Analysis Requests of Patients’ and Clinical Reflections in Primary Care

2020 ◽  
Vol 9 (2) ◽  
pp. 96-102
Author(s):  
Zerrin Gamsizkan ◽  
Mehmet Ali Sungur ◽  
Yasemin Çayır
Keyword(s):  
Chronic Disease ◽  
Blood Test ◽  
Family Health ◽  
Cross Sectional Study ◽  
Blood Analysis ◽  
Primary Role ◽  
Cross Sectional ◽  
High Expectations ◽  
Blood Tests ◽  
Study Results

Aim: The aim of the study is to determine the factors that may affect the demands of patients who come with the request to have a blood test without any chronic disease or a planned examination check. Methods: The data of this descriptive, cross-sectional study, were collected with a questionnaire that was prepared to examine the opinions of the patients who claim to have a blood test by coming to the family health center without any complaints. Patients over 18 years of age, who did not have any chronic disease and had no scheduled examination appointments were included in the study. Results: A total of 278 patients who wanted to have a blood test within the 6-months period were included in the study. Female patients who wanted to have a blood test were significantly more than male patients. When we look at the causes of patients who wanted to have a blood test; 61.2% (n=170) patients stated that they are concerned about their health and 6.1% (n=17) stated that they were affected by media warnings. There was no significant relationship between the frequency of blood test requests of patients and their age, gender, education, and general health status. Conclusion: Patients with high expectations and anxiety may be more willing to perform blood tests at inappropriate intervals. Family physicians, whose primary role is preventive medicine, have consultancy and information duties in order to protect their patients from the risk of over-examination and diagnosis. Keywords: blood tests, patient, screening, routine diagnostic tests

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