Clément Meier, Maud Wieczorek, Sarah Vilpert, Carmen Borrat-Besson, Ralf J Jox, Jürgen Maurer
{"title":"Learning from experience: does providing end-of-life care support for relatives boost personal end-of-life health literacy?","authors":"Clément Meier, Maud Wieczorek, Sarah Vilpert, Carmen Borrat-Besson, Ralf J Jox, Jürgen Maurer","doi":"10.1186/s12904-025-01645-1","DOIUrl":"10.1186/s12904-025-01645-1","url":null,"abstract":"<p><strong>Background: </strong>Despite the critical role of health literacy in utilizing palliative care and engaging in advance care planning, limited research exists on the determinants of end-of-life health literacy. This study investigates the association between individuals' experiences with end-of-life care support to relatives and their end-of-life health literacy among a population-based sample of adults aged 58 and older.</p><p><strong>Method: </strong>We used data from 1,548 respondents in Switzerland to Wave 8 (2019/2020) of the Survey on Health, Ageing, and Retirement in Europe. Their ability to understand medical jargon, find information, communicate, and make decisions about end-of-life care options was measured with the validated Subjective End-of-Life Health Literacy Scale. Experiences with end-of-life care support include having made medical decisions as healthcare proxy, accompanied, or cared for relatives at the end of life. Associations were estimated using ordinary least squares regressions, controlling for socio-demographic, health, and regional characteristics.</p><p><strong>Results: </strong>Respondents who experienced being a healthcare proxy (p < 0.001), who accompanied (p < 0.001), or who cared for a relative at the end of life (p < 0.001) tended to have higher levels of end-of-life health literacy. These results remained significant when the three variables were simultaneously included in the multivariable model (p < 0.001, p < 0.001 and p < 0.05).</p><p><strong>Conclusions: </strong>Our findings suggest that providing end-of-life care support to relatives is associated with higher end-of-life health literacy. Thus, as caregivers gain experience caring for others, targeted interventions could leverage their skills and encourage them to think of engaging in end-of-life planning for themselves.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"6"},"PeriodicalIF":2.5,"publicationDate":"2025-01-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11716501/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142957280","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Tharin Phenwan, Judith Sixsmith, Linda McSwiggan, Deans Buchanan
{"title":"A relational approach to co-create Advance Care Planning with and for people living with dementia: a narrative study.","authors":"Tharin Phenwan, Judith Sixsmith, Linda McSwiggan, Deans Buchanan","doi":"10.1186/s12904-024-01632-y","DOIUrl":"10.1186/s12904-024-01632-y","url":null,"abstract":"<p><strong>Background: </strong>Discussing Advance Care Planning (ACP) with people living with dementia (PwD) is challenging due to topic sensitivity, fluctuating mental capacity and symptom of forgetfulness. Given communication difficulties, the preferences and expectations expressed in any ACP may reflect family and healthcare professional perspectives rather than the PwD. Starting discussions early in the disease trajectory may avoid this, but many PwD may not be ready at this point for such discussions. Consequently, the optimal timing to discuss an ACP with and for PwD is undetermined. This study explored the changing needs of PwD and experiences of social contexts that influence ACP initiation and revision and aimed to identify the optimal time to discuss an ACP with PwD.</p><p><strong>Methods: </strong>Narrative online and telephone interviews were conducted with 13 PwD and 23 family carers. Participants were recruited via the Join Dementia Research (JDR) Platform. Narrative analysis was used to identify patterns in the data, generating three narratives: Shifting Expectations; Relational Interdependency and Trigger Points.</p><p><strong>Results: </strong>The Shifting Expectations narrative indicated that PwD's needs shifted to co-constructed needs with their family as PwD's independence declined. This was reflected in the Relational interdependency narrative where PwD almost always co-created and revised their ACPs with trusted key persons who provided relational support. The Trigger points narrative indicated various points in time when PwD can effectively initiate and revise their ACPs, ranging from before the diagnosis to years afterwards, challenging the current suggestion of an early ACP initiation.</p><p><strong>Conclusions: </strong>This study highlighted the changing co-constructed needs between PwD and their families that influence how PwD initiate and revise their ACP. The identification of ACP trigger points - the pivotal events throughout the dementia journey - that prompt PwD and family members to discuss their ACPs were suggested, indicating that PwD can initiate and revise their ACPs throughout the disease trajectory provided relational support is available whereby key persons involved in their care are involved and agree with the decisions being made. Therefore, an alternative, relational approach to ACP with and for PwD is recommended.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"5"},"PeriodicalIF":2.5,"publicationDate":"2025-01-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11708118/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142957274","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Juliane Poeck, Franziska Meissner, Bianka Ditscheid, Markus Krause, Ulrich Wedding, Cordula Gebel, Ursula Marschall, Gabriele Meyer, Werner Schneider, Antje Freytag
{"title":"Utilization and quality of primary and specialized palliative homecare in nursing home residents vs. community dwellers: a claims data analysis.","authors":"Juliane Poeck, Franziska Meissner, Bianka Ditscheid, Markus Krause, Ulrich Wedding, Cordula Gebel, Ursula Marschall, Gabriele Meyer, Werner Schneider, Antje Freytag","doi":"10.1186/s12904-024-01631-z","DOIUrl":"10.1186/s12904-024-01631-z","url":null,"abstract":"<p><strong>Background: </strong>There are hardly any data on the extent to which nursing home residents are provided with palliative homecare. We want to add evidence by comparing nursing home residents (who had been living in a nursing home for at least one year) and nursing-care-dependent community dwellers in terms of utilization and quality of palliative homecare.</p><p><strong>Methods: </strong>We conducted a population-based study with nationwide claims data from deceased beneficiaries of a large German health insurance provider. First, we compared utilization rates of primary palliative care [PPC], specialized palliative homecare [SPHC], and no palliative care [noPC] between nursing home residents and community dwellers, both descriptively and adjusted for covariates. Second, we analyzed the (adjusted) relationship between PPC-only and SPHC (both: starting ≥ 30 days before death), and noPC with healthcare indicators (death in hospital, hospitalization, emergencies, intensive care treatment within the last 30 days of life), and compared these relationships between nursing home residents and community dwellers. Analyses were conducted using simple and multiple logistic regression. Data were standardized by age and gender.</p><p><strong>Results: </strong>From 117,436 decedents in 2019, 71,803 could be included in the first, 55,367 in the second analysis. The rate of decedents with noPC was higher in nursing home residents (61.3%) compared to community dwellers (56.6%). Nursing home residents received less SPHC (10.7% vs. 23.2%) but more PPC (30.3% vs. 27.0%) than community dwellers, and achieved better outcomes across all end-of-life healthcare indicators. Adjusted for covariates, both types of palliative homecare were associated with beneficial outcomes, in nursing home residents as well as in community dwellers, with generally better outcomes for SPHC than PPC-only. For most outcomes, the associations with palliative homecare were equal or smaller in nursing home residents than in community dwellers.</p><p><strong>Conclusions: </strong>The overall better performance in quality of end-of-life care in nursing home residents than in community dwellers may be due to the institutionally provided nursing and general practitioner care within nursing homes. This may also explain higher rates of PPC and lower rates of SPHC in nursing home residents, and why the relationship with both PPC and SPHC are smaller in nursing home residents.</p><p><strong>Trial registration: </strong>German Clinical Trials Register (DRKS): [DRKS00024133, Date of registration: 28.06.2021].</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"3"},"PeriodicalIF":2.5,"publicationDate":"2025-01-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11706154/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142957094","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Zhishan Xie, Siyuan Tang, Claire E Johnson, Lin Xiao, Jinfeng Ding, Chongmei Huang
{"title":"Translation, cross-cultural adaptation and validation of the Chinese version of supportive and palliative care indicators tool (SPICT-CH) to identify cancer patients with palliative care needs.","authors":"Zhishan Xie, Siyuan Tang, Claire E Johnson, Lin Xiao, Jinfeng Ding, Chongmei Huang","doi":"10.1186/s12904-024-01641-x","DOIUrl":"https://doi.org/10.1186/s12904-024-01641-x","url":null,"abstract":"<p><strong>Introduction: </strong>People diagnosed with cancer are the most frequent users of palliative care. However, there are no specific standards for early identifying patients with palliative care needs in mainland China. The Supportive and Palliative Care Indicators tool (SPICT) can identify patients with cancer who are in need of palliative care across healthcare settings.</p><p><strong>Objective: </strong>To translate, cross-cultural adapt the SPICT and validate it among cancer patients with palliative care needs in a Chinese healthcare context.</p><p><strong>Method: </strong>We translated and culturally adapted the SPICT from English into Chinese, following both Beaton's and WHO's recommendations: (1) initial translation, (2) synthesis, (3) back translation, (4) expert committee review, and (5) pretest. The psychometric properties (e.g., content validity, internal consistency, and inter-rater reliability) were analyzed. Convenience sample was used to recruit 212 hospitalized cancer patients between January and August 2023. Their needs were assessed by two nurses within 24hours to determine the inter-rater reliability and stability of the Mandarin version of SPICT (SPICT-CH).</p><p><strong>Results: </strong>All of 36 items were retained in response to expert review. The Scale-Content Validity Index/Ave (S-CVI/Ave) of the SPICT-CH was 0.98, demonstrating very strong content validity. The SPICT-CH exhibited good coherence (Cronbach's alpha = 0.76) and reliability (Kappa = 0.71, 95% CI 0.71-0.72, P < 0.05).</p><p><strong>Conclusion: </strong>The SPICT-CH has good content validity and acceptable reliability among cancer patients within a Chinese hospital setting. This instrument can be effectively integrated into routine clinical practice to early identify patients who need palliative care in mainland China.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"4"},"PeriodicalIF":2.5,"publicationDate":"2025-01-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11708097/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142957284","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Fang Tan, Yan Wu, Na Li, Chuan Zhang, Shan Chen, Lan Huang, Yang Chen, Jianjun Jiang, Qian Deng
{"title":"Job burnout and resilience among palliative care professionals in china: a qualitative study.","authors":"Fang Tan, Yan Wu, Na Li, Chuan Zhang, Shan Chen, Lan Huang, Yang Chen, Jianjun Jiang, Qian Deng","doi":"10.1186/s12904-024-01638-6","DOIUrl":"https://doi.org/10.1186/s12904-024-01638-6","url":null,"abstract":"<p><strong>Background: </strong>Medical professionals who are engaged in palliative care commonly experience negative emotions resulting from the pain and grief experienced by patients and family members, which results in enormous psychological pressure for professionals, and the risk related to job burnout is significantly greater.</p><p><strong>Objective: </strong>We aimed to explore the factors influencing job burnout and resilience among palliative care professionals.</p><p><strong>Methods: </strong>We conducted a qualitative study using semistructured interviews and purposeful sampling methods. Face-to-face interviews were carried out from September 2023-April 2024 in the palliative care ward of one of the top three hospitals in a province of China. A total of 22 palliative care professionals were interviewed. The interview data were coded and relevant topics were extracted and summarized from two perspectives: factors influencing job burnout among palliative care professionals and resilience to job burnout. Data analysis was guided by Colaizzi's seven-step method.</p><p><strong>Results: </strong>This study identified personal, work, institutional, and social factors affecting job burnout among palliative care professionals in China. Personal factors include the original intention of engaging in palliative care, psychological qualities, and ways of coping with stress. Work factors include work intensity and environment and the characteristics and nature of palliative care work. Institutional and social factors include promotion mechanisms, wages and benefits, government policy support and professional recognition, as well as cultural conflicts from traditional China. The factors that affect resilience include personal internal factors and external factors. Personal internal factors come from good self-regulation and emotional balance, while external factors come from an increasingly sophisticated social support system and effective intervention measures to cope with job burnout.</p><p><strong>Conclusion: </strong>Our research found that many factors affect the job burnout and resilience of palliative care professionals. Promoting the construction of a professional team in palliative medicine, rational allocation of human resources, improving the welfare benefits of professionals, enhancing their social status, safeguarding their legitimate rights and interests, establishing effective emotional and social support systems, and implementing effective intervention measures in cultural contexts are all effective ways to reduce work fatigue and enhance resilience. Future research needs to investigate intervention measures to address or prevent burnout.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"2"},"PeriodicalIF":2.5,"publicationDate":"2025-01-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11702277/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142957278","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Emir Murphy Dourieu, Dominika Lisiecka, William Evans, Patricia Sheahan
{"title":"Xerostomia: a silent burden for people receiving palliative care - a qualitative descriptive study.","authors":"Emir Murphy Dourieu, Dominika Lisiecka, William Evans, Patricia Sheahan","doi":"10.1186/s12904-024-01617-x","DOIUrl":"https://doi.org/10.1186/s12904-024-01617-x","url":null,"abstract":"<p><strong>Background: </strong>The prevalence of dry mouth in the palliative care population is well documented and increases due to polypharmacy, radiotherapy and systemic conditions. Saliva as a lubricant for the mouth and throat has implications for swallowing, chewing, and speech. The literature about the experience of xerostomia (perceived feeling of dry mouth) in palliative care is scarce. Clinical evidence suggests that xerostomia has a negative impact on people's comfort, however, no recent studies explored this impact in detail. This new knowledge is paramount to adhere to the principles of palliative care.</p><p><strong>Aims: </strong>To evaluate the impact of xerostomia on the lives of people receiving palliative care with particular reference to eating and speaking. DESIGN: A qualitative descriptive study (interview design). Thematic analysis was used for data analysis.</p><p><strong>Setting: </strong>A single specialist palliative care centre in Ireland.</p><p><strong>Results: </strong>The majority of participants (35/40) had cancer. Xerostomia was reported to have multiple physical, psychological, and daily life consequences. Participants provided insights into the impact of xerostomia on sleeping, eating, talking, denture wearing, and they described in detail their intra-oral sensations associated with xerostomia. The negative effect of xerostomia on speech was reported as the most significant to participants.</p><p><strong>Conclusion: </strong>Xerostomia has a profound impact on the daily lives of people receiving palliative care, including physical and psychological consequences. Speaking is often affected, which can impede the person's ability to communicate. There needs to be increased awareness of the impact of xerostomia and more research is required to understand how best to manage xerostomia in a palliative care setting.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"1"},"PeriodicalIF":2.5,"publicationDate":"2025-01-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142933181","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Awareness-raising activities of advance care planning for community residents: a nationwide cross-sectional survey in Japan.","authors":"Masayo Kashiwagi, Noriko Morioka, Miho Terajima, Kyoko Hanari, Takehiro Sugiyama, Ryota Inokuchi, Nanako Tamiya","doi":"10.1186/s12904-024-01635-9","DOIUrl":"10.1186/s12904-024-01635-9","url":null,"abstract":"<p><strong>Background: </strong>Japan is implementing awareness-raising of advance care planning for older adults; however, only 451 out of 1 741 municipalities were engaged in advance care planning awareness-raising activities among residents, according to a 2017 survey. This study examined advance care planning awareness-raising activities among community residents by local governments after the 2018 revision of the government guidelines, as well as utilization of the revised guidelines, issues in awareness-raising activities, and directions for future activities.</p><p><strong>Methods: </strong>This cross-sectional questionnaire survey was conducted in prefectures and municipalities nationwide in 2022. Questions included the status, content, and issues of advance care planning awareness-raising activities for community residents. A multi-level logistic regression analysis was used to examine the characteristics of municipalities engaged in activities.</p><p><strong>Results: </strong>Responses were received from 43 prefectures (response rate: 91.5%) and 912 municipalities (response rate: 53.1%). Of the municipalities, 63.6% (n = 580) reported \"active\" advance care planning awareness-raising. A high financial capability index and implementation of awareness-raising activities in the prefecture where the municipality was located were significantly associated with its awareness-raising activities. Municipalities engaged in awareness-raising activities reported experiencing issues related to the objectives, methods, and outcome evaluation of the activities.</p><p><strong>Conclusions: </strong>Five-hundred eighty municipalities engaged in awareness-raising activities-a number that had increased significantly since the 2017 survey. Municipalities that could not engage in awareness-raising activities should receive financial support and other forms of support from prefectures. Furthermore, to ensure that municipalities clarify the purpose of awareness-raising and the desired outcomes, indices for quantitatively measuring results and achievements should be developed.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"23 1","pages":"303"},"PeriodicalIF":2.5,"publicationDate":"2024-12-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11686830/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142907813","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Anna-Maria Tolppanen, Annamarja Lamminmäki, Vesa Kataja, Kristiina Tyynelä-Korhonen
{"title":"Specialized palliative outpatient clinic care involvement associated with decreased end-of-life hospital costs in cancer patients, a single center study.","authors":"Anna-Maria Tolppanen, Annamarja Lamminmäki, Vesa Kataja, Kristiina Tyynelä-Korhonen","doi":"10.1186/s12904-024-01633-x","DOIUrl":"10.1186/s12904-024-01633-x","url":null,"abstract":"<p><strong>Background: </strong>Studies show that hospital deaths bring significant health care costs, and the involvement of specialized palliative care can help to reduce these costs. The aim of this retrospective registry-based study was to evaluate end-of-life hospital costs in patients dying in a university hospital oncology ward, with or without specialized palliative outpatient clinic contact at any timepoint.</p><p><strong>Methods: </strong>The study population consists of all patients who died in the Kuopio University Hospital oncology ward in the years 2012-2018 (n = 457). Hospital costs in the last 30 days of life and data on treatment decisions and background factors were gathered. Costs for patients with and without palliative care contact were compared. Effects of various variables on the costs were analyzed using gamma regression model.</p><p><strong>Results: </strong>Both the last 14 days' and 30 days' hospital costs before death were significantly lower among those 65 patients [14.2%] who had had a specialist palliative care contact. This was seen in inpatient day costs, microbiology, radiation therapy, laboratory, drug, radiology, and total costs. In a multivariate analysis including age, gender, year of death, time from diagnosis to death, and cancer type, the costs for 30 days prior to death were 33% lower in those patients who had had palliative care contact.</p><p><strong>Conclusions: </strong>Our results provide first indications that a contact to specialist palliative care in an outpatient clinic may reduce end-of-life hospital care costs in hospital-deceased cancer patients.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"23 1","pages":"302"},"PeriodicalIF":2.5,"publicationDate":"2024-12-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11681669/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142899653","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Katarzyna Wilk-Lelito, Anna Białoń-Janusz, Magdalena Kowalczyk, Elżbieta Wesołek, Tomasz Grądalski
{"title":"Australian Palliative Care Outcome Collaboration (PCOC) phases: cross cultural adaptation and psychometric validation for Polish palliative settings.","authors":"Katarzyna Wilk-Lelito, Anna Białoń-Janusz, Magdalena Kowalczyk, Elżbieta Wesołek, Tomasz Grądalski","doi":"10.1186/s12904-024-01616-y","DOIUrl":"10.1186/s12904-024-01616-y","url":null,"abstract":"<p><strong>Background: </strong>Measuring palliative care quality requires the application of evaluation methods to compare clinically meaningful groups of patients across different settings. Such protocols are currently lacking in Poland. The Australian Palliative Care Outcome Collaboration (PCOC) concept of Palliative phases precisely defines patients, enables episodes of care extraction for benchmarking and further assessment of service delivery. The present study is aimed at developing cross-cultural adaptation and psychometric validation for a Polish translation of Palliative phases.</p><p><strong>Methods: </strong>Forward and backward translation was performed to obtain a Polish draft version regarding definitions of the PCOC phases. The draft was then subjected to linguistic and graphical transformations in the process of cognitive interviewing. The acceptability of the Polish version was assessed based on staff perceptions of fit, ease of assignment and familiarity with the patient's and family's situation. Finally, cross-sectional analysis was conducted among 313 hospice and home-care palliative patients. The attending doctor and nurse independently evaluated the same patients using the Polish version of the PCOC phases to establish inter-rater reliability values. Then, to determine its construct validity, the PCOC indicators were referred to patients' prognosis, functioning level and PALCOM scale scores.</p><p><strong>Results: </strong>A Polish draft version of the PCOC phases was prepared. Seven of the 13 interviewees reported problems with comprehending this proposal. This prompted changes being made to linguistic and graphical aspects of the tool. The majority of respondents preferred the final graphical scheme of phases, prepared after round-two of interviews. Scheme application acceptability was confirmed in a practical trial. The respondents' overall conviction regarding degree of fit and assignment ease was high. Seventy percent of PCOC phase assignments was in agreement, and a moderate level or inter-rater reliability was obtained (kappa 0.573). The highest proportion of totally bed-bound patients with the shortest survival prognosis was observed for the terminal phase, while the highest complexity of palliative care needs was noted for the unstable one.</p><p><strong>Conclusions: </strong>The PCOC phases tool appears to be a valuable resource for specialists in palliative care settings to support audit measures. Practical training is recommended prior to its implementation in routine practice.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"23 1","pages":"301"},"PeriodicalIF":2.5,"publicationDate":"2024-12-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11674211/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142899648","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Hanna Pihlaja, Heidi A Rantala, Silja Soikkeli, Milja Arminen, Sonja Aho, Sirpa Leivo-Korpela, Juho T Lehto, Reetta P Piili
{"title":"Differences in the palliative care phase between patients with nonmalignant pulmonary disease and lung cancer: a retrospective study.","authors":"Hanna Pihlaja, Heidi A Rantala, Silja Soikkeli, Milja Arminen, Sonja Aho, Sirpa Leivo-Korpela, Juho T Lehto, Reetta P Piili","doi":"10.1186/s12904-024-01618-w","DOIUrl":"10.1186/s12904-024-01618-w","url":null,"abstract":"<p><strong>Background: </strong>Patients with chronic nonmalignant pulmonary disease and lung cancer both need palliative care, but palliative care services may be better adjusted to serve cancer patients. We compared the timing and clinical practice of palliative care and acute hospital usage during the last year of life in patients with nonmalignant pulmonary disease or lung cancer.</p><p><strong>Methods: </strong>This was a retrospective study of all patients in a palliative care phase (palliative goal of care) with nonmalignant pulmonary disease or lung cancer who were treated at Tampere University Hospital, Finland, during the years 2018-2020. The data were collected from the hospital's medical records. Comparisons between the groups were performed by using the Pearson chi-square test, Fisher's exact test, or Mann‒Whitney U test when appropriate. Survival was estimated by using the Kaplan‒Meier method.</p><p><strong>Results: </strong>The study population consisted of 107 patients with nonmalignant pulmonary disease and 429 patients with lung cancer. Patients with nonmalignant pulmonary disease survived longer in the palliative care phase than patients with lung cancer (115 vs. 59 days, p < 0.001). Compared to lung cancer patients, patients with nonmalignant disease received a palliative care specialist consultation more often during hospitalization (66% vs. 45%, p < 0.001) than during a preplanned outpatient visit (6% vs. 52%, p < 0.001), were less likely to be referred to palliative care pathway (79% vs. 87%, p = 0.033), and spent more days in an acute care hospital during the last year of life (median of 10 vs. 6 days, p = 0.023). Contrary to lung cancer patients, referral to the palliative care pathway was not significantly associated with decreased acute hospital resource usage during the last month of life among patients with nonmalignant pulmonary disease.</p><p><strong>Conclusions: </strong>Compared to lung cancer patients, patients with nonmalignant pulmonary disease had longer palliative care phases but fewer visits to the palliative care outpatient clinic and fewer referrals to the palliative care pathways. Palliative care arrangements seemed to have more influence on the end-of-life care of lung cancer patients. There is a need for long-term palliative care services with better abilities to meet the special needs of patients with nonmalignant pulmonary disease.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"23 1","pages":"299"},"PeriodicalIF":2.5,"publicationDate":"2024-12-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11670334/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142899651","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}