Research Issues in Palliative Care

1985 ◽  
Vol 1 (1) ◽  
pp. 24-31 ◽  
Author(s):  
Carolyn Cook Gotay

Despite the recent proliferation of hospice programs and related research, a number of basic issues remain. Firstly the populations “at risk” for hospice care have not been precisely delineated. Secondly, the impact of the structure of a given hospice program on outcome has been given insufficient attention. Thirdly, assessing the impact of hospice care on quality of life has presented challenges in both definition and measurement. Finally, data relating to the costs of hospice care are difficult to evaluate. It is recommended that palliative care research focus on these areas. In addition, hospice programs and research need to be sensitive to changes over time and to dissemination of principles of hospice care.

1997 ◽  
Vol 15 (3) ◽  
pp. 1206-1217 ◽  
Author(s):  
K C Sneeuw ◽  
N K Aaronson ◽  
M A Sprangers ◽  
S B Detmar ◽  
L D Wever ◽  
...  

PURPOSE To evaluate the usefulness of caregiver ratings of cancer patients' quality of life (QL), we examined the following: (1) the comparability of responses to a brief standardized QL questionnaire provided by patients, physicians, and informal caregivers; and (2) the relative validity of these ratings. METHODS The study sample included cancer patients receiving chemotherapy, their treating physicians, and significant others involved closely in the (informal) care of the patients. During an early phase of treatment and 3 months later, patients and caregivers completed independently the COOP/WONCA charts, covering seven QL domains. At baseline, all sources of information were available for 295 of 320 participating patients (92%). Complete follow-up data were obtained for 189 patient-caregiver triads. RESULTS Comparison of mean scores on the COOP/WONCA charts revealed close agreement between patient and caregiver ratings. At the individual patient level, exact or global agreement was observed in the majority of cases (73% to 91%). Corrected for chance agreement, moderate intraclass correlations (ICC) were noted (0.32 to 0.72). Patient, physician, and informal caregiver COOP/WONCA scores were all responsive to changes over time in specific QL domains, but differed in their relative performance. Relative to the patients, the physicians were more efficient in detecting changes over time in physical fitness and overall health, but less so in relation to social function and pain. CONCLUSION For studies among patient populations at risk of deteriorating self-report capabilities, physicians and informal caregivers can be useful as alternative or complementary sources of information on cancer patients' QL.


2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Janneke van Roij ◽  
◽  
Myrte Zijlstra ◽  
Laurien Ham ◽  
Linda Brom ◽  
...  

Abstract Background Palliative care is becoming increasingly important because the number of patients with an incurable disease is growing and their survival is improving. Previous research tells us that early palliative care has the potential to improve quality of life (QoL) in patients with advanced cancer and their relatives. According to limited research on palliative care in the Netherlands, patients with advanced cancer and their relatives find current palliative care suboptimal. The aim of the eQuiPe study is to understand the experienced quality of care (QoC) and QoL of patients with advanced cancer and their relatives to further improve palliative care. Methods A prospective longitudinal observational cohort study is conducted among patients with advanced cancer and their relatives. Patients and relatives receive a questionnaire every 3 months regarding experienced QoC and QoL during the palliative trajectory. Bereaved relatives receive a final questionnaire 3 to 6 months after the patients’ death. Data from questionnaires are linked with detailed clinical data from the Netherlands Cancer Registry (NCR). By means of descriptive statistics we will examine the experienced QoC and QoL in our study population. Differences between subgroups and changes over time will be assessed while adjusting for confounding factors. Discussion This study will be the first to prospectively and longitudinally explore experienced QoC and QoL in patients with advanced cancer and their relatives simultaneously. This study will provide us with population-based information in patients with advanced cancer and their relatives including changes over time. Results from the study will inform us on how to further improve palliative care. Trial registration Trial NL6408 (NTR6584). Registered in Netherlands Trial Register on June 30, 2017.


Author(s):  
Frode Eika Sandnes

AbstractPurpose: Some universal accessibility practitioners have voiced that they experience a mismatch in the research focus and the need for knowledge within specialized problem domains. This study thus set out to identify the balance of research into the main areas of accessibility, the impact of this research, and how the research profile varies over time and across geographical regions. Method: All UAIS papers indexed in Scopus were analysed using bibliometric methods. The WCAG taxonomy of accessibility was used for the analysis, namely perceivable, operable, and understandable. Results: The results confirm the expectation that research into visual impairment has received more attention than papers addressing operable and understandable. Although papers focussing on understandable made up the smallest group, papers in this group attracted more citations. Funded research attracted fewer citations than research without funding. The breakdown of research efforts appears consistent over time and across different geographical regions. Researchers in Europe and North America have been active throughout the last two decades, while Southeast Asia, Latin America, and Middle East became active in during the last five years. There is also seemingly a growing trend of out-of-scope papers. Conclusions: Based on the findings, several recommendations are proposed to the UAIS editorial board.


2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Åsa Kettis ◽  
Hanna Fagerlind ◽  
Jan-Erik Frödin ◽  
Bengt Glimelius ◽  
Lena Ring

Abstract Background Effective patient-physician communication can improve patient understanding, agreement on treatment and adherence. This may, in turn, impact on clinical outcomes and patient quality of life (QoL). One way to improve communication is by using patient-reported outcome measures (PROMs). Heretofore, studies of the impact of using PROMs in clinical practice have mostly evaluated the use of standardized PROMs. However, there is reason to believe that individualized instruments may be more appropriate for this purpose. The aim of this study is to compare the effectiveness of the standardized QoL-instrument, the European Organization for Research and Treatment of Cancer Quality of Life C-30 (EORTC-QOL-C30) and the individualized QoL instrument, the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), in clinical practice. Methods In a prospective, open-label, controlled intervention study at two hospital out-patient clinics, 390 patients with gastrointestinal cancer were randomly assigned either to complete the EORTC-QOL-C30 or the SEIQoL-DW immediately before the consultation, with their responses being shared with their physician. This was repeated in 3–5 consultations over a period of 4–6 months. The primary outcome measure was patients’ health-related QoL, as measured by FACIT-G. Patients’ satisfaction with the consultation and survival were secondary outcomes. Results There was no significant difference between the groups with regard to study outcomes. Neither intervention instrument resulted in any significant changes in health-related QoL, or in any of the secondary outcomes, over time. This may reflect either a genuine lack of effect or sub-optimization of the intervention. Since there was no comparison to standard care an effect in terms of lack of deterioration over time cannot be excluded. Conclusions Future studies should focus on the implementation process, including the training of physicians to use the instruments and their motivation for doing so. The effects of situational use of standardized or individualized instruments should also be explored. The effectiveness of the different approaches may depend on contextual factors including physician and patient preferences.


2021 ◽  
pp. 1-24
Author(s):  
Daniela Viramontes-Hörner ◽  
Zoe Pittman ◽  
Nicholas M Selby ◽  
Maarten W Taal

Abstract Health-related quality of life (HRQoL) is severely impaired in persons receiving dialysis. Malnutrition has been associated with some measures of poor HRQoL in cross-sectional analyses in dialysis populations, but no studies have assessed the impact of malnutrition and dietary intake on change in multiple measures of HRQoL over time. We investigated the most important determinants of poor HRQoL and the predictors of change in HRQoL over time using several measures of HRQoL. We enrolled 119 haemodialysis and 31 peritoneal dialysis patients in this prospective study. Nutritional assessments (Subjective Global Assessment [SGA], anthropometry and 24-hour dietary recalls) and HRQoL questionnaires (Short Form-36 [SF-36] mental [MCS] and physical component scores [PCS] and European QoL-5 Dimensions [EQ5D] health state [HSS] and visual analogue scores [VAS]) were performed at baseline, 6 and 12 months. Mean age was 64(14) years. Malnutrition was present in 37% of the population. At baseline, malnutrition assessed by SGA was the only factor independently (and negatively) associated with all four measures of HRQoL. No single factor was independently associated with decrease in all measures of HRQoL over 1 year. However, prevalence/development of malnutrition over one year was an independent predictor of 1-year decrease in EQ5D HSS and 1-year decrease in fat intake independently predicted the 1-year decline in SF-36 MCS and PCS, and EQ5D VAS. These findings strengthen the importance of monitoring for malnutrition and providing nutritional advice to all persons on dialysis. Future studies are needed to evaluate the impact of nutritional interventions on HRQoL and other long-term outcomes.


2020 ◽  
Vol 7 (Supplement_1) ◽  
pp. S328-S328
Author(s):  
Monika Pogorzelska-Maziarz ◽  
Jeannette Kates ◽  
Jingjing Shang ◽  
Angela M Gerolamo

Abstract Background Due to the emergence of COVID-19 and resulting pandemic, there is an increased demand for palliative care and hospice care services. However, the impact of COVID-19 on the hospice and palliative agencies is unknown. Methods An electronic survey was disseminated via the Hospice & Palliative Nurses Association newsletter, posted to the Sigma Theta Tau Hospice and Palliative Care Community Group discussion board and advertised through social media from May 7–28, 2020. Summary statistics were computed. Results We collected 36 surveys representing all U.S. regions. Most respondents (78%) reported that their agency has cared for confirmed COVID-19 patients. Only half of agencies had access to laboratory facilities for surveillance and detection of the presence of outbreaks in both patients and staff (58%) and the ability to test patients and providers for COVID-19 (55%). Due to COVID-19, participants stated that the agency added new protocols regarding aerosol-generating procedures policies (58%), use of surface barriers (61%) and PPE usage (e.g. donning and doffing) in patient homes (56%). The majority (76%) reported that their agency required field clinicians to call ahead to ascertain COVID-19 exposure/symptoms before a home visit. More than half (58%) reported that their agency lacked supplies, including N95 respirators (45%), cleaning/disinfectant product (23%), alcohol based sanitizer (18%), eye protection (18%), gowns (18%), and surgical masks (14%). Overall, participants shared that field clinicians had to reuse (76%), extend (73%) or ration (30%) PPE supplies. Respondents reported that their agency accessed supplemental PPE through state/local resources (67%), private/community donations (67%), and do-it-yourself efforts (55%). One third (31%) reported that their agency was experiencing staffing shortages due to COVID-19; of these, 60% reported that shortages were due to staff infected with/quarantined due to COVID-19. Conclusion Our findings suggest that COVID-19 has presented significant challenges for palliative care and hospice agencies as they provide care to patients and families at an unprecedented rate. Disclosures All Authors: No reported disclosures


2018 ◽  
Vol 21 (2) ◽  
pp. 62-71
Author(s):  
Henry O’Lawrence ◽  
Rohan Chowlkar

Purpose The purpose of this paper is to determine the cost effectiveness of palliative care on patients in a home health and hospice setting. Secondary data set was utilized to test the hypotheses of this study. Home health care and hospice care services have the potential to avert hospital admissions in patients requiring palliative care, which significantly affects medicare spending. With the aging population, it has become evident that demand of palliative care will increase four-fold. It was determined that current spending on end-of-life care is radically emptying medicare funds and fiscally weakening numerous families who have patients under palliative care during life-threatening illnesses. The study found that a majority of people registering for palliative and hospice care settings are above the age group of 55 years old. Design/methodology/approach Different variables like length of stay, mode of payment and disease diagnosis were used to filter the available data set. Secondary data were utilized to test the hypothesis of this study. There are very few studies on hospice and palliative care services and no study focuses on the cost associated with this care. Since a very large number of the USA, population is turning 65 and over, it is very important to analyze the cost of care for palliative and hospice care. For the purpose of this analysis, data were utilized from the National Home and Hospice Care Survey (NHHCS), which has been conducted periodically by the Centers for Disease Control and Prevention’s National Center for Health Statistics. Descriptive statistics, χ2 tests and t-tests were used to test for statistical significance at the p<0.05 level. Findings The Statistical Package for Social Sciences (SPSS) was utilized for this result. H1 predicted that patients in the age group of 65 years and up have the highest utilization of home and hospice care. This study examined various demographic variables in hospice and home health care which may help to evaluate the cost of care and the modes of payments. This section of the result presents the descriptive analysis of dependent, independent and covariate variables that provide the overall national estimates on differences in use of home and hospice care in various age groups and sex. Research limitations/implications The data set used was from the 2007 NHHCS survey, no data have been collected thereafter, and therefore, gap in data analysis may give inaccurate findings. To compensate for this gap in the data set, recent studies were reviewed which analyzed cost in palliative care in the USA. There has been a lack of evidence to prove the cost savings and improved quality of life in palliative/hospice care. There is a need for new research on the various cost factors affecting palliative care services as well as considering the quality of life. Although, it is evident that palliative care treatment is less expensive as compared to the regular care, since it eliminates the direct hospitalization cost, but there is inadequate research to prove that it improves the quality of life. A detailed research is required considering the additional cost incurred in palliative/hospice care services and a cost-benefit analysis of the same. Practical implications While various studies reporting information applicable to the expenses and effect of family caregiving toward the end-of-life were distinguished, none of the previous research discussed this issue as their central focus. Most studies addressed more extensive financial effect of palliative and end-of-life care, including expenses borne by the patients themselves, the medicinal services framework and safety net providers or beneficent/willful suppliers. This shows a significant hole in the current writing. Social implications With the aging population, it has become evident that demand of palliative/hospice care will increase four-fold. The NHHCS have stopped keeping track of the palliative care requirements after 2007, which has a negative impact on the growing needs. Cost analysis can only be performed by analyzing existing data. This review has recognized a huge niche in the evidence base with respect to the cost cares of giving care and supporting a relative inside a palliative/hospice care setting. Originality/value The study exhibited that cost diminishments in aggressive medications can take care of the expenses of palliative/hospice care services. The issue of evaluating result in such a physically measurable way is complicated by the impalpable nature of large portions of the individual components of outcome. Although physical and mental well-being can be evaluated to a certain degree, it is significantly more difficult to gauge in a quantifiable way, the social and profound measurements of care that help fundamentally to general quality of care.


2021 ◽  
Vol 7 (4) ◽  
pp. 469-473
Author(s):  
Ting Fang ◽  
Nian Wang ◽  
Meng Chen ◽  
Hongmei Ma

Objective Explore the impact of personalized nursing services and hospice care on the quality of life of elderly patients with advanced cancer. Method We selected 80 elderly cancer patients admitted to our hospital from September 2020 to May 2021, and divided these patients into a study group and a control group using a random number table method. The patients in the control group used conventional nursing methods to treat and care for the patients, and the patients in the study group used hospice care measures and combined personalized nursing measures. The quality of life and pain treatment effects of the two groups of patients before and after treatment were compared. Result Before treatment, the quality-of-life scores of the two groups of patients were low, and there was no statistical difference (P>0.05); After treatment, the quality of life of the two groups of patients improved, but compared with the control group, the improvement was more obvious in the study group, and the difference was statistically significant (P<0.05). In terms of pain treatment effect, the total effective rate of pain treatment in the study group was 87.5%, which was significantly better than the 62.5% in the control group. The difference was statistically significant (P<0.05). Conclusion Personalized nursing services and hospice care are conducive to improving the survival and treatment of elderly patients with advanced cancer, and can be used as a clinical application program for the care of advanced cancer patients.


2020 ◽  
Author(s):  
Á Szabó ◽  
Eva Neely ◽  
C Stephens

© The Author(s) 2019. Community grandparenting may promote the well-being of older adults. We examined the impact of non-kin and grandparental childcare on quality of life and loneliness using longitudinal data from 2653 older New Zealanders collected over 2 years. Providing both non-kin and grandparental childcare predicted greater self-realisation for women only and was associated with reduced levels of control and autonomy for men. Non-kin childcare was also associated with reduced social loneliness over time independent of gender. Findings suggest that non-kin grandparenting has psychosocial benefits for older adults. Surrogate grandparenting offers promising avenues for those without grandchildren to experience the benefits of grandparenting.


2014 ◽  
Vol 1 (1) ◽  
Author(s):  
Cory Ingram

In palliative care we have the privilege to care for seriously ill people and their families. Some people value capturing their life story or illness journey on film. I have been fortunate to have been invited into the lives of many people close the end of life for a heartfelt conversation.On an interactive iPad incorporated in the poster, the recorded narrative of patients and one bereft spouse the poster audience will experience the lived experience of people close to the end of life as they reflect on their lives. The narratives will demonstrate how each lived with a new found improved quality of life in the face of increasing symptoms, declining functioning and the approaching end of life; otherwise known as healing. Topics of healing and quality of life, patient-centered care, dignity, human development, spirituality and love will be the focus of their stories. The stories lay bare the very practical, emotional, existential, and personal experience central to our provision of whole person care through palliative care. The poster audience will experience a renewed sense of the impact of a dedicated approach to whole person care as experienced through those on the receiving end.


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