F Teike Lüthi, A-C Sterie, C Guyaz, P Larkin, M Bernard, C Berna
{"title":"Home-based hypnosis: a feasibility study for end-of-life patients and their relatives.","authors":"F Teike Lüthi, A-C Sterie, C Guyaz, P Larkin, M Bernard, C Berna","doi":"10.1016/j.jpainsymman.2025.03.019","DOIUrl":"https://doi.org/10.1016/j.jpainsymman.2025.03.019","url":null,"abstract":"<p><strong>Context: </strong>Palliative care patients facing the end of their life often experience severe symptoms and seek complementary therapies for relief and improved well-being. Clinical hypnosis is a promising mind-body therapy in palliative settings, benefiting both patients and their relatives. Nevertheless, access at the end-of-life can be limited due to symptom severity and restricted mobility.</p><p><strong>Objectives: </strong>This study aimed to assess the feasibility and acceptability of a home-based hypnosis intervention for end-of-life patients to alleviate symptoms and for their relatives to enhance coping resources.</p><p><strong>Methods: </strong>A mixed-method observational feasibility study was conducted from February 2022 to January 2023 in French-speaking Switzerland. Participants included 32 end-of-life patients and 14 relatives, receiving weekly 20-25-minute hypnosis sessions over four weeks. Quantitative data on symptom intensity and well-being were collected using numeric rating scales, while qualitative data were gathered through semi-structured interviews with those who completed the intervention.</p><p><strong>Results: </strong>Eighteen patients and eight relatives completed the four-sessions. Significant reductions were observed in patient anxiety (median 6.5 to 2.0, p=.001) and pain (median 5.0 to 3.0, p=.001). Patient well-being improved across all sessions (median 5 to 7, p=.001). Relatives reported increased well-being (median 5.0 to 8.0, p=.001), serenity (median 5.0 to 8.0, p=.001), and energy levels (median 5.0 to 7.5, p=.042). High levels of satisfaction and frequent use of self-hypnosis recordings were noted.</p><p><strong>Conclusion: </strong>A home-based hypnosis intervention was feasible and seemed beneficial for both end-of-life patients and their relatives, reducing symptoms and enhancing coping resources. Future research should build upon these findings to further support the integration of complementary therapies into standard palliative care practices.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-03-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143743145","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}
Oladayo Afolabi, Anna Peeler, Kennedy Nkhoma, Catherine Evans, Mary Abboah-Offei, Eve Namisango, Adwoa Bemah Boamah Mensah, Jane Bates, Dorothee van Breevoort, Duncan Kwaitana, Modai Mnenula, Edwina Addo Opare-Lokko, Dickson Chifamba, Lovemore Mupaza, Lindsay Farrant, Joy Hunter, Richard Harding
{"title":"A logic model and multinational consensus definition of primary palliative care in sub-Saharan Africa.","authors":"Oladayo Afolabi, Anna Peeler, Kennedy Nkhoma, Catherine Evans, Mary Abboah-Offei, Eve Namisango, Adwoa Bemah Boamah Mensah, Jane Bates, Dorothee van Breevoort, Duncan Kwaitana, Modai Mnenula, Edwina Addo Opare-Lokko, Dickson Chifamba, Lovemore Mupaza, Lindsay Farrant, Joy Hunter, Richard Harding","doi":"10.1016/j.jpainsymman.2025.03.018","DOIUrl":"https://doi.org/10.1016/j.jpainsymman.2025.03.018","url":null,"abstract":"<p><strong>Background: </strong>The number of people needing palliative care is rapidly increasing in sub-Saharan Africa (SSA) . Healthcare systems in SSA are heterogenous, so broadly defining and operationalizing primary palliative care is a major obstacle to achieving Universal Health Coverage. We aimed to conceptualize and operationalize primary palliative care in SSA by developing an evidence-based logic model and consensus definition.</p><p><strong>Methods: </strong>We purposively sampled expert participants in a workshop in Harare, Zimbabwe. They collaboratively developed a logic model using the Centers for Disease Control and Prevention's guide for developing and using logic models and a consensus definition using modified nominal group technique.</p><p><strong>Results: </strong>Twenty-four primary palliative care experts comprised of researchers (70.1%) , physicians (37.5%) and nurses (29.2%) from 8 countries (7 in SSA) participated. Twenty (83.3%) participants fell into multiple role categories. Primary palliative care essential resources (i.e., medications, funding, health workers) , activities (i.e., clinical guidelines and referral pathway development, education) , outputs (i.e., care pathways, cost-benefit ratios) , and outcomes (i.e., improved quality of life, skilled primary palliative care workforce, reduced health-related suffering) relevant for countries in SSA were identified. To define primary palliative care in SSA, participants identified and ranked crucial components, including holistic care (provided by health workers with role-appropriate training) , culturally congruent delivery of care, and accessibility at the entry point of healthcare systems. The definition highlights that \"primary\" pertains to how people access care, rather than who or where it is provided.</p><p><strong>Conclusion: </strong>The identified essential components of primary palliative care address the region's specific context, challenges and strengths. Training the existing primary healthcare workforce in palliative care and providing necessary support and resources must be prioritized in order to improve outcomes in SSA.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-03-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143730566","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}
Junyong Lee, Chung-Woo Lee, Hwa Sun Kim, Hak Ryeong Kim, Soo Yun Lim, Jung Ran Kim
{"title":"Potentially Inappropriate Prescriptionss in End-of-Life Cancer Patients in Home-Based Hospice Care.","authors":"Junyong Lee, Chung-Woo Lee, Hwa Sun Kim, Hak Ryeong Kim, Soo Yun Lim, Jung Ran Kim","doi":"10.1016/j.jpainsymman.2025.03.021","DOIUrl":"https://doi.org/10.1016/j.jpainsymman.2025.03.021","url":null,"abstract":"<p><strong>Context: </strong>Polypharmacy and inappropriate prescribing are prevalent among end-of-life cancer patients, potentially compromising symptom management and quality of life. Limited data are available on potentially inappropriate medications (PIMs) and prescribing omissions (PPOs) of opioid in South Korea, particularly in home-based hospice care settings.</p><p><strong>Objectives: </strong>This study aimed to evaluate the prevalence of PIMs and PPOs in advanced cancer patients referred to home-based hospice care and identify factors associated with these prescribing issues.</p><p><strong>Methods: </strong>A retrospective observational study included 102 advanced cancer patients referred to a single center's home-based hospice care between November 2022 and November 2023. PIMs were assessed using the STOPPFrail criteria, while PPOs were defined as inadequate opioid prescribing omissions for moderate to severe cancer pain. Logistic regression analysis identified factors associated with PIMs and PPOs.</p><p><strong>Results: </strong>PIMs were observed in 40.2% of patients, with higher prevalence in those over 70 years old (48.7%) and those with multiple comorbidities. Statins (25.5%) and antihypertensives (29.4%) were the most common PIMs. Among patients with moderate to severe cancer pain, 45.5% experienced PPOs due to inadequate opioid prescriptions. Older age (OR 3.90, p < 0.01) and comorbidities (OR 20.90, p < 0.01) were significantly associated with PIMs, while diabetes was linked to PPOs (OR 2.00, p = 0.01).</p><p><strong>Conclusion: </strong>The findings highlight critical gaps in medication management for end-of-life cancer patients. Systematic deprescribing protocols and improved strategies to address opioid stigma and prescribing hesitancy are essential to align treatments with end-of-life care goals and enhance patient quality of life.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-03-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143729518","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}
Dora Lendvai, Yan Zhan, Dio Kavalieratos, Lynne Iannone, Kathleen M Akgün, Larry A Allen, David Bekelman, Mary Ersek, Nathan E Goldstein, Carol Luhrs, Shelli Feder
{"title":"Patients' and Caregivers' Perspectives on the Role of Ambulatory Specialty Palliative Care for People with Heart Failure.","authors":"Dora Lendvai, Yan Zhan, Dio Kavalieratos, Lynne Iannone, Kathleen M Akgün, Larry A Allen, David Bekelman, Mary Ersek, Nathan E Goldstein, Carol Luhrs, Shelli Feder","doi":"10.1016/j.jpainsymman.2025.02.019","DOIUrl":"https://doi.org/10.1016/j.jpainsymman.2025.02.019","url":null,"abstract":"<p><strong>Context: </strong>Palliative care is a component of high-quality care for people with heart failure (HF). However, how best to deliver specialist palliative care (SPC) within ambulatory settings is unknown. Such information could help healthcare systems expand access to these services.</p><p><strong>Objectives: </strong>We aimed to understand the preferred components and characteristics of ambulatory SPC delivery for people with HF and their non-medical family caregivers, as well as to identify barriers to its utilization.</p><p><strong>Methods: </strong>We conducted a qualitative descriptive study employing content analysis among people with HF and caregivers. We enrolled twenty participants with current use of ambulatory SPC from 3 Department of Veterans Affairs (VA) medical centers.</p><p><strong>Results: </strong>The sample (N=20; patients=16, caregivers=4) mean age was 64.3 years (standard deviation = 16.5 years), 80% were male, 85% were White, and 10% were Black. Participants valued three key components of ambulatory SPC: 1) providing comprehensive education about HF; 2) care coordination of medical and social services, and 3) serious illness conversations including discussions of goals of care, the selection of surrogate decision-makers, and the completion of advance directives and related documentation. For participants, important characteristics of ambulatory SPC delivery included 1) collaboration and communication among SPC and cardiology clinicians, 2) the accessibility and availability of the SPC team, and 3) flexibility in visit logistics. Barriers to engagement were conflating SPC with hospice, and logistical concerns with appointment delivering and scheduling.</p><p><strong>Conclusion: </strong>People with HF and their caregivers prefer and value specific components and characteristics of ambulatory SPC. Implementation of ambulatory SPC should be educational, collaborative, and incorporate logistical preferences.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-03-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143730494","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}
Malin Svensson, Andreas Palm, Nilla Westöö, Magnus Lindskog
{"title":"Bronchoscopic intervention reduces dyspnea in severely symptomatic patients with central malignant airway obstruction.","authors":"Malin Svensson, Andreas Palm, Nilla Westöö, Magnus Lindskog","doi":"10.1016/j.jpainsymman.2025.03.022","DOIUrl":"https://doi.org/10.1016/j.jpainsymman.2025.03.022","url":null,"abstract":"<p><strong>Objectives: </strong>We aimed to investigate the effects of endoscopic interventions on dyspnea, Quality of life (QoL), and physiological measurements in patients with malignant central airway obstruction (MCAO).</p><p><strong>Methods: </strong>This was a single-center prospective cohort study. All patients referred to Uppsala University Hospital, Sweden, for bronchoscopic interventions due to MCAO between Jan 1, 2015, and Dec 31, 2019, were eligible for inclusion. Patients were evaluated pre- and postoperatively by heart rate (HR), respiratory rate (RR), forced expiratory volume in 1 second (FEV1), oxygen saturation. the NRS dyspnea scale, the Cancer Dyspnea Scale (CDS), the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core-30 (EORTC QLQ-C30) and QLQ-lung cancer-13 (EORTC-QLQ LC13), and ECOG-WHO Performance Status (ECOG-PS).</p><p><strong>Results: </strong>The study group comprised 44 patients (56% women, 69.3±6.8 years). No procedure-related deaths occurred. The first postoperative day the following measurements had decreased: RR (19.9±4.9 vs 17.1±3.9, p=0.0027), CDS score (13.6 ±1.43 vs 5.8±4.9, p=0.0003), NRS dyspnea score (5.6 ±2.2 vs 2.3±2.4, p<0.001). The FEV1 increased from 1.23±0.45 to 1.51±0.57, (p=0.0014). At 1 month follow up the CDS score had decreased further to 5.2±4.1, (p=0.0001), the QLQ-C30 dyspnea score from 76.5±25.7 to 41.2±27.7, (p=0.001) and the QLQ-LC13 dyspnea score from 62.5±6.4 to 32.3±5.5, (p=0.003). The QLQ-C30 Global Health Scale (GHS) score increased from 33.9±4.9 to 47.0±18.7, (p=0.0124). Significant changes were only seen in patients with preoperative ECOG PS ≥2.</p><p><strong>Conclusion: </strong>Most patients with MCAO benefit from bronchoscopic intervention and those with worse ECOG PS may benefit even more in terms of symptom relief.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-03-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143730568","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}
Anil N Makam, David L O'Riordan, Rachael Heitner, Brynn Bowman, Joanne Spetz, Steven Z Pantilat
{"title":"Palliative Care Services in Long-Term Acute Care Hospitals: A National Survey Study.","authors":"Anil N Makam, David L O'Riordan, Rachael Heitner, Brynn Bowman, Joanne Spetz, Steven Z Pantilat","doi":"10.1016/j.jpainsymman.2025.03.009","DOIUrl":"https://doi.org/10.1016/j.jpainsymman.2025.03.009","url":null,"abstract":"<p><strong>Context: </strong>Virtually every patient in a long-term acute care hospital (LTACH) has a serious illness and thus, potentially eligible for palliative care (PC) .</p><p><strong>Objectives: </strong>To evaluate the scope, structure, and staffing of PC programs in LTACHs METHODS: Descriptive cross-sectional survey of LTACH leaders affiliated with the National Association of Long Term Hospitals (NALTH) linked with publicly available hospital data to determine presence, structure, and staffing of PC service, and perceptions among leaders of LTACHs without PC services.</p><p><strong>Results: </strong>Among 42 respondent LTACHs (50.6%) , 24 (57%) reported having a PC program. LTACHs with versus without PC were more often part of a healthcare system (75% vs 59%) but not an LTACH chain (38% vs 53%) . Most externally contracted PC services (75%) , provided in-person consultation at least most weekdays (82%) , were financed by professional billing (71%) and/or hospital support (64%) , and were well regarded. The most common staffing discipline was physicians (55%) ; 10% met the interdisciplinary team definition. Half (55%) reported seeing fewer than 50% of patients perceived to benefit from PC; 36% reported interest in PC training for their staff. Among the 18 LTACHs without PC, most (78%) perceived that PC was beneficial, and recognized recruiting staff, financing, and LTACH/host hospital leadership as barriers.</p><p><strong>Conclusions: </strong>Independently owned, non-profit LTACHs embedded within healthcare systems more often reported having PC services, with variability in structure and opportunities for further expansion and training. Despite positive regard for PC, barriers of staffing and financing will need to be overcome to establish PC services in LTACHs.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-03-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143730493","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":"Palliative Care Program Characteristics and End-of-Life Outcomes for Patients with Metastatic Cancer.","authors":"May Hua, Ling Guo, Shuang Wang, R Sean Morrison","doi":"10.1016/j.jpainsymman.2025.03.020","DOIUrl":"https://doi.org/10.1016/j.jpainsymman.2025.03.020","url":null,"abstract":"<p><strong>Context: </strong>Although U.S. palliative care programs have substantial differences in their implementation, whether this heterogeneity impacts patient outcomes is unknown.</p><p><strong>Objectives: </strong>To determine if palliative care program characteristics are associated with differences in end-of-life quality metrics for patients with metastatic cancer.</p><p><strong>Methods: </strong>Retrospective cohort study of patients with metastatic cancer who received care from programs that participated in the National Palliative Care Registry, 2018-2019. Multilevel regression was used to examine the association between individual program characteristics and outcomes including use of hospice, hospice enrollment ≥ 3 days, use of intensive care (ICU) in the last 30 days of life, and use of chemotherapy in the last 14 days of life.</p><p><strong>Results: </strong>The cohort was comprised of 33,015 patients who received care from 235 palliative care programs. Program maturity was the only characteristic associated with a difference in any outcome. Patients who received care from mature programs were more likely to use hospice (adjusted hazard ratio (aHR) 1.15 [1.06-1.25], for 5-10 years vs. < 5 years; aHR 1.18 [1.09-1.29] for > 10 years vs. < 5 years), and were also more likely to have hospice enrollment ≥ 3 days (aHR 1.18 [1.08-1.31] for 5 - 10 years vs. < 5 years; aHR 1.22 [1.11-1.34] for > 10 years vs.< 5 years).</p><p><strong>Conclusion: </strong>Palliative care program characteristics largely were not associated with differences in end-of-life quality metrics for patients with metastatic cancer. Further work is needed to better understand why program maturity may be associated with improved outcomes.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-03-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143692612","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}
Hiba Abujaradeh, Julia O'Brien, Susan R Mazanec, Catherine M Bender, Isabelle M Schlemmer, Adam M Brufsky, Elham Nasrollahi, Margaret Rosenzweig
{"title":"The Effect of Race and Area Deprivation on Symptom Profiles over the Course of Early-Stage Breast Cancer.","authors":"Hiba Abujaradeh, Julia O'Brien, Susan R Mazanec, Catherine M Bender, Isabelle M Schlemmer, Adam M Brufsky, Elham Nasrollahi, Margaret Rosenzweig","doi":"10.1016/j.jpainsymman.2025.03.010","DOIUrl":"10.1016/j.jpainsymman.2025.03.010","url":null,"abstract":"<p><strong>Context: </strong>Limited research has examined racial disparities in symptom burden prior to chemotherapy initiation, during and at the completion of chemotherapy OBJECTIVE: To describe and compare the symptom burden (fatigue, pain, and physical functioning) and change over time between Black and White women receiving Early-Stage Breast Cancer (ESBC) chemotherapy while considering social determinants of health.</p><p><strong>Methods: </strong>A longitudinal, repeated measures comparative design was employed. Time points of symptom measurement (PROMIS domains) at baseline, mid and end point were adjusted as per patient chemotherapy schedule. Linear mixed models were applied.</p><p><strong>Results: </strong>There were 149 patients, 36% Black 64% White (54±12 years) recommended to receive ESBC chemotherapy with adequate data for symptom analysis. PAIN: Main effect of race was significant (F(1, 390) = 29.43, p<.001) for pain with Black patients. Black patients experienced significantly higher pain scores compared to White patients at pretherapy (Mean Difference; MD=3.7, p=.034), midpoint (MD=5.8, p=.002), and endpoint (MD=7.8, p<.001). In the adjusted model, Black race and higher BMI were significant predictors of higher pain scores. Black patients experienced significant deterioration in pain over time.</p><p><strong>Fatigue: </strong>The scores for fatigue increased significantly from baseline for Black patients by endpoint (MD<sub>T1-T3</sub>= 8.7, p<.001) and for White patients at midpoint (MD<sub>T1-T2</sub>= 5.7) and at endpoint (MD<sub>T1-T3</sub>=10.1, p<.001). In the adjusted model, higher BMI predicted worse fatigue scores.</p><p><strong>Physical function: </strong>Black patients had significantly lower physical function scores compared to White patients at midpoint (MD=4.0, p=.027). Physical function decreased by endpoint in Black (MD<sub>T1-T3</sub>=7.8, p<.001), and White patients (MD<sub>T1-T3</sub>=7.7, p<.001). In the adjusted model, only higher BMI and cardiopulmonary comorbidities significantly predicted worse physical function.</p><p><strong>Conclusion: </strong>Symptom burden significantly increased over the course of chemotherapy for all patients. Scores for pain and physical function were higher overall for Black patients and deteriorated at a greater rate for Black vs. White women over the course of chemotherapy. BMI was a significant predictor of pain, fatigue, and physical function, This assessment holds implications for proactive assessment and mitigation strategies.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-03-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143663387","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":"PC-FACS March 4, 2025.","authors":"","doi":"10.1016/j.jpainsymman.2025.03.011","DOIUrl":"https://doi.org/10.1016/j.jpainsymman.2025.03.011","url":null,"abstract":"","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-03-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143663373","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":"Parenting Support Intervention During Pregnancy with a Life-limiting Fetal Condition: A Pilot Study.","authors":"Denise Côté-Arsenault, Samah Hawsawi, Erin Denney-Koelsch, Kathie Kobler, Kimberly Spence","doi":"10.1016/j.jpainsymman.2025.03.002","DOIUrl":"https://doi.org/10.1016/j.jpainsymman.2025.03.002","url":null,"abstract":"<p><strong>Context: </strong>Standard care in the United States for parents with life-limiting fetal conditions (LLFC) focuses on medical decision-making through fetal care centers and perinatal palliative care (PPC) teams when accessible. There are no PPC interventions to optimize parents' daily lived experiences during a LLFC pregnancy. We developed a novel, relationship-centered intervention, the Developmental Perinatal Parenting Intervention with Life-limiting Fetal Conditions (DPPI-LLFC), based on two theoretical frameworks and one concept, delivered separate from routine care.</p><p><strong>Objectives: </strong>To assess whether the DPPI-LLFC is feasible and acceptable for the parents, interventionists, and research team. We also evaluate parents' experience of the intervention components and completion of measures.</p><p><strong>Methods: </strong>A single-arm pilot study of the DPPI-LLFC was delivered via telehealth. We trained 3 nurse interventionists (RN-Is) in the theoretical frameworks and intervention. Eligible participants were mothers continuing their LLFC pregnancy and their willing co-parents. RN-Is met with participants monthly throughout pregnancy and twice after birth. Participants completed mental health measures via online questionnaire. Fidelity was assessed across the study.</p><p><strong>Results: </strong>13 parents (8 mothers, 5 fathers) participated, with 92% retention. Intervention delivery via telehealth was feasible and acceptable by participants. Fidelity assessments resulted 100% inter-rater agreement; all DPPI-LLFC components were delivered as designed. Pregnancy anxiety decreased over pregnancy and participants reported low-moderate decision regret and grief intensity by the study's end. Participants reported the intervention being \"meaningful and appreciated.\"</p><p><strong>Conclusion: </strong>The novel, telehealth-delivered DPPI-LLFC was feasible, acceptable, and valued by parents during their LLFC pregnancy. This intervention holds great promise for addressing PPC access and delivery challenges.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.2,"publicationDate":"2025-03-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143663372","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}