Editorial
The Timekeeper's Son
- William Breitbart
-
- Published online by Cambridge University Press:
- 15 August 2019, pp. 372-373
-
- Article
-
- You have access Access
- HTML
- Export citation
Original Article
Evidence of palliative care stigma: The role of negative stereotypes in preventing willingness to use palliative care
- Megan Johnson Shen, Joseph D. Wellman
-
- Published online by Cambridge University Press:
- 06 December 2018, pp. 374-380
-
- Article
- Export citation
-
Objective
Although palliative care is critical to managing symptoms, pain, and transitions to end-of-life care among those facing serious or chronic illness, it is often underused, which may be due to stigma associated with palliative care representing giving up fighting one's illness. The goal of the present studies was to test the theoretical framework of stigma within the context of palliative care to inform future work on intervention development that addresses potential barriers to palliative care utilization.
MethodIn study 1, participants (n = 152) had an oncologist describe two treatment options to a terminally ill cancer patient: (1) palliative care and (2) chemotherapy. Participants were then randomly assigned to read that the patient chose palliative care or chemotherapy. In study 2, these stereotypes about those receiving palliative care were examined as a potential mediator between perceived palliative care stigma and prospective palliative care use. Participants (n = 199) completed self-report measures of palliative care stigma, negative stereotypes about palliative care users, and prospective use of palliative care. Mediation analysis tested the mediational effects of stereotypes on the relationship between palliative care stigma and prospective usage of palliative care.
ResultIn study 1, those in the palliative care condition endorsed significantly higher levels of negative stereotypes about the patient, viewed the decision more negatively, and saw the patient as less afraid of death. In study 2, palliative care stigma was associated with less prospective usage of palliative care for self and for one's family member. This relationship was mediated by negative stereotypes about individuals receiving palliative care.
Significance of resultsResults suggest that palliative care stigma exists (study 1) and that this stigma may be a barrier to the utilization of palliative care (study 2). Future research should examine stigma reduction as a potential intervention target to improve palliative care utilization.
Meaning of work and personal protective factors among palliative care professionals
- Beatriz Moreno-Milan, Antonio Cano-Vindel, Pedro Lopez-Dóriga, Leonardo Adrián Medrano, William Breitbart
-
- Published online by Cambridge University Press:
- 07 March 2019, pp. 381-387
-
- Article
- Export citation
-
Objective
Healthcare professionals who work in palliative care units face stressful life events on a daily basis, most notably death. For this reason, these professionals must be equipped with the necessary protective resources to help them cope with professional and personal burnout. Despite the well-recognized importance of the construct “meaning of work,” the role of this construct and its relationship with other variables is not well-understood. Our objective is to develop and evaluate a model that examines the mediating role of the meaning of work in a multidisciplinary group of palliative care professionals. Using this model, we sought to assess the relationships between meaning of work, perceived stress, personal protective factors (optimism, self-esteem, life satisfaction, personal growth, subjective vitality), and sociodemographic variables.
MethodProfessionals (n = 189) from a wide range of disciplines (physicians, psychologists, nurses, social workers, nursing assistants, physical therapists, and chaplains) working in palliative care units at hospitals in Madrid and the Balearic Islands were recruited. Sociodemographic variables were collected and recorded. The following questionnaires were administered: Meaning of Work Questionnaire, Perceived Stress Questionnaire, Life Orientation Test-Revised, Satisfaction with Life Scale, Subjective Vitality Scale, Rosenberg Self-Esteem Scale, and the Personal Growth Scale.
ResultThe explanatory value of the model was high, explaining 49.5% of the variance of life satisfaction, 43% of subjective vitality, and 36% of personal growth. The main findings of this study were as follow: (1) meaning of work and perceived stress were negatively correlated; (2) optimism and self-esteem mediated the effect of stress on the meaning attached to work among palliative care professionals; (3) the meaning of work mediated the effect of stress on subjective vitality, personal growth, and life satisfaction; and (4) vitality and personal growth directly influenced life satisfaction.
Significance of resultsThe proposed model showed a high explanatory value for the meaning professionals give to their work and also for perceived stress, personal protective factors, and sociodemographic variables. Our findings could have highly relevant practical implications for designing programs to promote the psychological well-being of healthcare professionals.
Mediating effect of interpersonal coping on meaning in spirituality and quality of life and the influences of depression and anxiety thereon in cancer patients
- Kyeong Min Cha, So Young Kang, So Yeon Hyun, Jae Sung Noh, Yun Mi Shin, Nam Hee Kim
-
- Published online by Cambridge University Press:
- 05 November 2018, pp. 388-395
-
- Article
- Export citation
-
Objective
This study aimed to investigate associations among spirituality, coping strategies, quality of life (QOL), and the effects of depression and anxiety thereon in cancer patients.
MethodIn total, 237 cancer patients referred to a psycho-oncology clinic at a university hospital in Korea were enrolled. After identifying predictors of patient QOL in a stepwise regression model, we developed a hypothetical path model wherein interpersonal coping was considered as a mediating variable between spirituality (meaning/peace) and QOL and wherein depression and anxiety affected each of these three variables.
ResultThe direct effect of spirituality (meaning/peace) on QOL was 36.7%. In an indirect model, interpersonal coping significantly mediated the relationship between spirituality (meaning/peace) and QOL. Depression exerted the largest negative effect on spirituality (meaning/peace), interpersonal coping, and QOL. Anxiety had negative effects on spirituality (meaning/peace) and QOL, but a positive effect on interpersonal coping.
Significance of resultsInterpersonal coping strategies work as a partial mediator of the relationship between meaning/peace subscales of spirituality and QOL. Effective management of depression may help in achieving better outcomes associated therewith. Greater attention and efforts to improve social connectedness and meaning of life in spiritual well-being may improve the QOL of cancer patients.
A mixed methods analysis of perceived cognitive impairment in hematopoietic stem cell transplant survivors
- Lisa M. Wu, Nadia Kuprian, Krista Herbert, Ali Amidi, Jane Austin, Heiddis Valdimarsdottir, Christine Rini
-
- Published online by Cambridge University Press:
- 21 September 2018, pp. 396-402
-
- Article
- Export citation
-
Objective
Hematopoietic stem cell transplant (HSCT) survivors may show evidence of objective cognitive impairment; however, perceived cognitive problems and their impact on quality of life are less well-understood. The purpose of this study was to explore HSCT survivors’ perceptions of cognitive impairment and its effect on daily life functioning.
MethodSixty-nine autologous and allogeneic HSCT survivors nine months to three years posttransplant experiencing mild survivorship problems completed a brief structured interview regarding perceived cognitive impairment since transplant. Data were coded and content analyzed. The frequency of participants reporting cognitive problems by domain and associations between reports of cognitive problems and age, depressed mood, anxiety, and health-related quality of life were examined.
ResultOverall, 49 of the 69 participants (71%) reported cognitive impairments after transplant: 38 in memory (55%), 29 in attention and concentration (42%), and smaller numbers in other domains. There were no significant differences in problems reported by transplant type. Of the 50 participants who worked before transplant, 19 (38%) did not return to work following transplant, with 12 citing cognitive and health problems as being the reason. There were significant associations between reports of cognitive impairment and younger age (p = 0.02), depressed mood (p = 0.02), anxiety (p = 0.002), and health-related quality of life (p = 0.008).
Significance of resultsA large proportion of survivors reported cognitive impairment following HSCT that impaired daily life functioning. Perceived cognitive impairment was associated with younger age, greater distress and reduced health-related quality of life.
Goals of care and treatment in terminal delirium: A qualitative study of the views and experiences of healthcare professionals caring for patients with cancer
- Megumi Uchida, Tatsuya Morita, Yoshinori Ito, Kazuko Koga, Tatsuo Akechi
-
- Published online by Cambridge University Press:
- 23 November 2018, pp. 403-408
-
- Article
- Export citation
-
Objective
This study explores the views of healthcare professionals regarding care and treatment goals in irreversible terminal delirium and their effect on patients and caregivers.
MethodWe conducted a qualitative interview study of healthcare professionals (palliative care physician, oncologist, psycho-oncologist, and clinical psychologist) engaged in the treatment of terminally ill cancer patients. We assessed the views of healthcare workers regarding treatment goals in terminal delirium and their effect on patients and their families.
ResultOf the 21 eligible healthcare professionals, 20 agreed to participate in this study. Three of the professionals had experience with treating terminal delirium as family caregivers. We identified five important aspects of treatment goals in terminal delirium based on the views of healthcare professionals: (1) adequate management of symptoms/distress, (2) ability to communicate, (3) continuity of self, (4) provision of care and support to families, and (5) considering a balance (between symptom alleviation and maintaining communication; between symptom alleviation and family preparations for the death of patients; balance between specific treatment goals for delirium and general treatment goals).
Significance of resultsAccording to the views of healthcare workers questioned in this study, goals of care and treatment in terminal delirium are multidimensional and extend beyond simply controlling patient symptoms.
Psychosocial services for primary immunodeficiency disorder families during hematopoietic cell transplantation: A descriptive study
- Christina Mangurian, Christopher Scalchunes, Jennie Yoo, Brent Logan, Tiffany Henderson, Sumathi Iyengar, Heather Smith, Morton J. Cowan
-
- Published online by Cambridge University Press:
- 18 September 2018, pp. 409-414
-
- Article
- Export citation
-
Objective
Caregivers for patients undergoing hematopoietic cell transplantation (HCT) are susceptible to significant psychosocial distress. This cross-sectional study aimed to describe psychosocial support services offered and used by caregivers of pediatric primary immune deficiency (PID) during HCT at 35 hospitals across North America.
MethodCaregivers of pediatric patients with PID were recruited by e-mail to participate in an anonymous 140-question survey instrument between April and May 2016 (N = 171).
ResultOf those meeting inclusion criteria (53%), family counseling services were only offered to fewer than half of caregivers (42%). Of the survey participants not offered counseling services, the majority desired family counseling (70%) and sibling counseling (73%). That said, when offered counseling, utilization rates were low, with 22% of caregivers using family counseling and none using sibling counseling.
Significance of resultsThese results indicate the need to offer and tailor counseling services for families throughout the HCT process. Further research should focus on reducing barriers to utilization of counseling services such as offering bedside counseling services, online modalities, and/or financial assistance.
Development and implementation of an advance care planning program in Catalonia, Spain
- Cristina Lasmarías, Amor Aradilla-Herrero, Sebastià Santaeugènia, Carles Blay, Sara Delgado, Sara Ela, Núria Terribas, Xavier Gómez-Batiste
-
- Published online by Cambridge University Press:
- 05 October 2018, pp. 415-424
-
- Article
- Export citation
-
Objective
Implementation of an advance care planning (ACP) program for people with advanced chronic conditions is a complex process. The aims of this paper are to describe (1) the development of the ACP program in Catalonia, Spain, for patients with advanced chronic conditions and complex needs and (2) the preliminary results of the implementation of this program in health and social services.
MethodThe ACP program was developed and implemented in a four-stage process as follows: (1) design and organization of the project; (2) selection of the professionals to carry out the project; (3) creation of four working groups to develop the conceptual model, guidelines, training program, and perform a qualitative evaluation; and (4) project implementation.
ResultThe following deliverables were completed: (1) conceptual framework document; (2) practical guidelines for the application of the ACP; (3) online training course (3,763 healthcare professionals completed the online course, with an overall satisfaction rating of 8.4 on a 10-point scale); and (4) additional training activities (conferences, short courses, and seminars) in between 2015 and 2017.
Significance of resultsThis project was led by the Catalan Ministry of Health. The strengths of the project development include the contribution of a wide range of professionals from the entire region, approval by the Catalan Bioethics Committee and the Social Services Ethics Committee, and the ongoing validation by members of the community. A standardized online training course was offered to all primary care professionals and included as a quality indicator for continuing education for those professionals in the period 2016–2020. The main outcome of this project is the establishment of a pragmatic ACP throughout the region and training of the health and social care professionals involved in the care of advanced chronic patients.
Timing of palliative care access and outcomes of advanced cancer patients referred to an inpatient palliative care consultation team in Brazil
- Letícia Taniwaki, Pedro Luiz Serrano Usón Junior, Polianna Mara Rodrigues de Souza, Bernard Lobato Prado
-
- Published online by Cambridge University Press:
- 10 September 2018, pp. 425-430
-
- Article
- Export citation
-
Objective
Little is known about the outcomes of cancer patients referred to palliative care (PC) teams in developing countries. Our aim was to examine the timing of PC access and outcomes of patients with advanced cancer referred to an inpatient PC consultation team in Brazil.
MethodRetrospective study of consecutive patients with advanced cancer admitted to a tertiary care general hospital (April 2015–December 2016) and referred for the first time to an inpatient PC consultation team. Patients’ demographics, clinical features, time from first consult to death or discharge, and outcomes on medication use, clinical interventions, and end-of-life preferences were retrieved. An analysis was performed before and after PC.
ResultOne hundred eleven patients were included. Median age was 68; 72% had an Eastern Cooperative Oncology Group performance status ≥3. The median timing of PC access was 9 days (first interquartile = 3, third interquartile = 19). The use of analgesics (from 75% to 85%, p = 0.001) and opioids (from 50% to 73%, p < .001) increased. A lower proportion was receiving antibiotics (68% vs 48%, p < 0.001), thromboprophylaxis (44% vs 26%, p < 0.001), antihypertensives (28% vs 15%, p = 0.001), and antiemetic agents (64% vs 54%, p = 0.027). Chemotherapy use was lower (39–25%, p < 0.001). More patients had an end-of-life preference (39% to 25%, p < 0.001) and were not willing to receive intubation (32% vs 60%, p < 0.001), intensive care treatment (30% vs 55%, p < 0.001), cardiopulmonary resuscitation (35% vs 62%, p < 0.001), and artificial nutrition (22% vs 34%, p < 0.001).
Significance of resultsAlthough PC referrals occurred exceedingly late during the cancer disease trajectory, positive changes were observed in medication profiles, clinical interventions use, and end-of-life preferences of patients with advanced cancer referred to a specialized inpatient PC consultation team in Brazil. Further efforts are needed to improve early palliative cancer care in developing countries.
Development, implementation, and initial results of the UC San Diego Health Moores Cancer Center Wellbeing Screening Tool
- Veronica Cardenas, Yuko Abbott, Jeremy M. Hirst, Brent T. Mausbach, Suzanne Agarwal, Georgianna Collier, Luke Tran, Geline Tamayo, Anna Downey, Maurice Herring, Scott A. Irwin
-
- Published online by Cambridge University Press:
- 02 January 2019, pp. 431-435
-
- Article
- Export citation
-
Objective
All accredited cancer institutions are required to screen patients for psychosocial distress. This paper describes the development, implementation, and preliminary outcomes of the University of California San Diego Health Moores Cancer Center Wellbeing Screening Program.
MethodEssential steps learned in a formal National Cancer Institute–funded training workshop entitled “Implementing Comprehensive Biopsychosocial Screening” were followed to ensure successful program implementation. These steps included identification of stakeholders; formation of a working committee; establishment of a vision, process, and implementation timeline; creation of a screening tool; development of patient educational material; tool integration into an electronic medical record system; staff training and pilot testing of tool administration; and education about tool results and appropriate follow-up actions. Screening data were collected and analyzed retrospectively for preliminary results and rapid cycle improvement of the wellbeing screening process.
ResultsOver an 8-month implementation and assessment period, the screening tool was administered 5,610 times of 7,664 expected administrations (73.2%.) to 2,394 unique patients. Visits in which the questionnaire was administered averaged 39.6 ± 14.8 minutes, compared with 40.3 ± 15.2 minutes for visits in which the questionnaire was not administered (t = −1.76, df = 7,662, p = 0.079).
Significance of resultsThis program provides a process and a tool for successful implementation of distress screening in cancer centers, in a meaningful way for patients and providers, while meeting accreditation standards. Further, meaningful data about patient distress and tool performance were able to be collected and utilized.
Validation of the Brief Edinburgh Depression Scale (BEDS) in a Mexican population with advanced cancer in a palliative care service
- Oscar Rodríguez-Mayoral, Bárbara Rodríguez-Ortíz, Leticia Ascencio-Huertas, Adriana Peña-Nieves, Emma Verástegui, Silvia Allende-Pérez, Mari Lloyd-Williams
-
- Published online by Cambridge University Press:
- 26 September 2018, pp. 436-440
-
- Article
- Export citation
-
Objective
Depression in palliative advanced cancer patients is common, but often goes unrecognized. One of the first steps toward improving detection is the development of tools that are valid in the specific language and setting in which they are to be used. The Brief Edinburgh Depression Scale (BEDS) is a sensitive case-finding tool for depression in advanced cancer patients that was developed in the United Kingdom. There are no validated instruments to identify depression in Mexican palliative patients. Our aim was to validate the Spanish-language version of the BEDS in Mexican population with advanced cancer.
MethodWe conducted a cross-sectional study with outpatients from the palliative care unit at the Instituto Nacional de Cancerología in Mexico City. The Mexican BEDS was validated against a semistructured psychiatric clinical interview according to the Diagnostic and Statistical Manual of Mental Disorders, 5th edition, classification criteria for major depressive disorder. The interviewer was blind to the BEDS score at the time of the assessment.
ResultSeventy subjects completed the scale and interview. Women represented 71.4% of the sample and median age of subjects was 56.5 years (range, 20–85 years). The prevalence of major depressive disorder according to the psychiatric interview was 20%. The most valid cutoff for defining a case of depression was a score ≥5 of 18 on the Mexican BEDS, which gave a sensitivity of 85.7% and specificity of 62.5%. The scale's Cronbach's alpha was 0.71.
Significance of resultsMajor depressive disorder is frequent in Mexican palliative patients. The Spanish-language Mexican version of the BEDS is the first valid case-finding tool in advanced cancer patients in this setting.
Development of a tool to identify and assess psychosocial and spiritual needs in end-of-life patients: The ENP-E scale
- Dolors Mateo-Ortega, Joaquín T. Limonero, Jorge Maté-Méndez, Elba Beas, Jesús González-Barboteo, Elisabeth Barbero, Sara Ela, Xavier Gómez-Batiste
-
- Published online by Cambridge University Press:
- 16 October 2018, pp. 441-447
-
- Article
- Export citation
-
Objective
The goal of this study is to describe the development of a new tool, the Psychosocial and Spiritual Needs Evaluation scale Instrumento de Evaluación de Necesidades Psicosociales y Espirituales del Enfermo al Final de Vida (ENP-E), designed to assess the psychosocial needs of end-of-life (EOL) patients. And, secondarily, to describe the face validity and psychometric properties of this instrument in the Spanish-speaking context.
MethodThe scale was developed through a seven-stage process: (1) literature review; (2) expert panel establishment; (3) discussion and agreement on the most relevant dimensions of psychosocial care; (4) description of key indicators and consensus-based questions to evaluate such dimensions; (5) assessment of the scale by external palliative care (PC) professionals; (6) evaluation by patients; and (7) analysis of scale's psychometrics properties. To assess content validity, 30 PC professionals and 20 patients evaluated the questionnaire. To determine psychometric properties, 150 participants completed these scales: the ENP-E; the Hospital Anxiety and Depression Scale; item 15 from the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative; and the Distress Thermometer.
ResultAll respondents evaluated the tool as “excellent.” In terms of construct validity, the internal consistency (Cronbach's alpha = 0.74) and temporal stability (test-retest r = 0.74, p < 0.1) were both adequate. On the factorial analysis, four factors (emotional-wellbeing, social support, spiritual, and information) explained 58.4% of the variance. This scale has a sensitivity of 76.3%, specificity of 78.9%, and the cutoff is 28.
Significance of resultsTo provide quality PC to EOL patients, it is essential to determine the psychosocial factors that influence well-being. This requires the use of reliable and specific instruments. The ENP-E is a novel tool that provides a systematic, holistic assessment of the psychosocial needs of EOL patients. Its routine use would allow clinicians to monitor such needs over time. This would, in turn, permit comprehensive, highly individualized interventions to improve effective PC approach.
Bereavement risk assessment of family caregivers of patients with cancer: Japanese version of the Bereavement Risk Assessment Tool
- Tomohiro Uchida, Noriaki Satake, Toshimichi Nakaho, Akira Inoue, Hidemitsu Saito
-
- Published online by Cambridge University Press:
- 14 November 2018, pp. 448-452
-
- Article
- Export citation
-
Objectives
The Bereavement Risk Assessment Tool (BRAT) seems to be useful in identifying those who are likely to suffer from the more severe consequences of bereavement. To date, however, only a few studies have examined bereavement risk using the BRAT. This study investigated bereavement risk in family caregivers of patients with cancer using the Japanese version of the Bereavement Risk Assessment Tool (BRAT-J). We also investigated the relationship of bereavement risk with psychological distress and resilience among caregivers to determine the validity of the BRAT-J.
MethodsWe conducted family psychoeducation in the palliative care unit of Tohoku University Hospital with participants who were recruited in this study. Among the participants, 50 family caregivers provided their written informed consent and were included in this study. Participants were assessed using the BRAT-J and completed the Japanese version of the Kessler Psychological Distress Scale (K6) and the Tachikawa Resilience Scale (TRS).
ResultsAccording to the BRAT-J, five individuals (10%) were in the high category of bereavement risk (level 4 or 5). We also found that family caregivers of patients experienced many different pressures, such as facing the unknown; their own work; and insufficient financial, practical, or physical resources. These issues are associated with various mental problems. Additionally, the level of bereavement risk was significantly correlated with K6 scores (ρ = 0.30, p = 0.032), and the TRS score (ρ = –0.44, p = 0.001). These correlations confirmed previous findings and that the BRAT-J can be an efficient screening tool for the bereavement risk of family caregivers of patients with cancer.
Significance of resultsIt appears that the BRAT-J is useful in predicting the likelihood of difficulties or complications in bereavement for family caregivers and could help to provide support with these issues when needed.
An evaluation of the mourning tradition, the “First Feast,” in the context of palliative care: The possibility of incorporating cultural rituals into palliative care
- İsmail Okan, Mustafa Suren, Yalcin Onder, Riza Citil, Secil Akay, Tugce Demir
-
- Published online by Cambridge University Press:
- 10 January 2019, pp. 453-458
-
- Article
- Export citation
-
Objective
Grief is intertwined with cultural and religious rituals that are highly appreciated in the quality standards of palliative care. Here, we aimed to investigate whether a cultural mourning ritual, the “First Feast,” can be used by palliative care teams to ease the grief response of the deceased patient's relatives.
MethodA questionnaire with 23 questions about the prevalence of the First Feast tradition, the content, the pros and cons, and whether it would be useful for the grieving relatives of deceased patients was prepared and given to the palliative care patients’ relatives. The data were evaluated using the chi-square test.
ResultA total of 427 participants were enrolled in the study; 60.7% were female and the mean age was 36 (±13.4). A total of 76.8% of the participants were from the Tokat region and 77.8% (n = 332) performed the First Feast tradition. A significant difference was observed among participants with Tokat origins and non-Tokat origins in terms of awareness of the tradition (84.8% and 69.7%, respectively; p = 0.001). Ninety-one percent of the participants acknowledged that the tradition helped to ease the grief response of the relatives.
Significance of resultsThe First Feast, a mourning tradition performed in Tokat and other parts of Turkey, might be a useful auxiliary method for palliative care teams to help grieving families.
Frequency and characteristics of drowsiness, somnolence, or daytime sleepiness in patients with advanced cancer
- Sriram Yennurajalingam, Srikanth Reddy Barla, Joseph Arthur, Gary B. Chisholm, Eduardo Bruera
-
- Published online by Cambridge University Press:
- 04 December 2018, pp. 459-463
-
- Article
- Export citation
-
Introduction
Cancer-related drowsiness (CRD) is a distressing symptom in advanced cancer patients (ACP). The aim of this study was to determine the frequency and factors associated with severity of CRD. We also evaluated the screening performance of Edmonton Symptom Assessment Scale-drowsiness (ESAS-D) item against the Epworth Sedation Scale (ESS).
MethodWe prospectively assessed 180 consecutive ACP at a tertiary cancer hospital. Patients were surveyed using ESAS, ESS, Pittsburgh Sleep Quality Index, Insomnia Severity Index, and Hospital Anxiety Depression Scale.
ResultNinety of 150 evaluable patients had clinically significant CRD (ESS); median (interquartile ratio): ESS. 11 (7–14); ESAS-D. 5 (2–6); Pittsburgh Sleep Quality Index. 8 (5–11); Insomnia Severity Index. 13 (5–19); Stop Bang Scoring 3 (2–4), and Hospital Anxiety Depression Scale-D 6 (3–10). ESAS-D was associated with ESAS (r, p) sleep (0.38, <0.0001); pain (0.3, <0.0001); fatigue (0.51, <0.0001); depression (0.39, <0.0001); anxiety (0.44, <0.0001); shortness of breath (0.32, <0.0001); anorexia (0.36, <0.0001), feeling of well-being [(0.41, <0.0001), ESS (0.24, 0.001), and opioid daily dose (0.19, 0.01). Multivariate-analysis showed ESAS-D was associated with fatigue (odds ratio [OR] = 9.08, p < 0.0001), anxiety (3.0, p = 0.009); feeling of well-being (OR = 2.27, p = 0.04), and insomnia (OR = 2.35; p = 0.036). Insomnia (OR = 2.35; p = 0.036) cutoff score ≥3 (of 10) resulted in a sensitivity of 81% and 32% and specificity of 70% and 44% in the training and validation samples, respectively.
Significance of resultsClinically significant CRD is frequent and seen in 50% of ACP. CRD was associated with severity of insomnia, fatigue, anxiety, and worse feeling of well-being. An ESAS-D score of ≥3 is likely to identify most of the ACP with significant CRD.
Symptom prevalence and management in older adult patients in Lebanon
- Huda Abu-Saad Huijer, Souha Fares, Rachele Bejjani, Suzanne Dhaini, Samar Noureddine, Husam Ghusn
-
- Published online by Cambridge University Press:
- 21 September 2018, pp. 464-471
-
- Article
- Export citation
-
Objective
The purpose of this study is to explore symptoms and the effectiveness of their management in older adult palliative care candidates in Lebanon. The aims of this study were to: (1) determine symptom prevalence in Lebanese older adults who qualify for palliative care; (2) identify the severity and distress of symptoms; (3) identify the prevalence of symptom management and its efficacy; and (4) explore the relationship between overall symptom burden and its correlates.
MethodThis study uses an observational cross-sectional design using convenience sampling (N = 203) to recruit older adults qualifying for palliative care from three major medical centers in Lebanon.
ResultThe mean age of the sample was 78.61 years. The most prevalent symptoms were lack of energy (93.5%), worrying (83.2%), and pain (71.4%). Psychological symptoms had the highest mean scores, preceded only by the physical symptoms and lack of energy. The most treated symptoms were physical with pain having the highest treatment prevalence (91%). Although psychological symptoms were the most burdensome, they were poorly treated. Multiple regression analysis showed that symptom scores had significant positive associations with financial status, social functioning, and comorbidities; there was a negative association with age.
Significance of resultsLack of energy and psychological symptoms were the most prevalent, with the latter having the highest mean total symptom scores. Treatment was poor for psychological symptoms and effective for physical ones. Associations were found between age, comorbidity, financial problems, social functioning, and total physical and psychological mean symptom burden scores. More attention needs to be given to psychological symptoms and their management among older adults receiving palliative care.
Development of a cancer pain self-management resource to address patient, provider, and health system barriers to care
- Tim Luckett, Patricia M. Davidson, Anna Green, Natalie Marie, Mary-Rose Birch, John Stubbs, Jane Phillips, Meera Agar, Frances Boyle, Melanie Lovell
-
- Published online by Cambridge University Press:
- 23 April 2019, pp. 472-478
-
- Article
- Export citation
-
Objective
The majority of self-management interventions are designed with a narrow focus on patient skills and fail to consider their potential as “catalysts” for improving care delivery. A project was undertaken to develop a patient self-management resource to support evidence-based, person-centered care for cancer pain and overcome barriers at the levels of the patient, provider, and health system.
MethodThe project used a mixed-method design with concurrent triangulation, including the following: a national online survey of current practice; two systematic reviews of cancer pain needs and education; a desktop review of online patient pain diaries and other related resources; consultation with stakeholders; and interviews with patients regarding acceptability and usefulness of a draft resource.
ResultFindings suggested that an optimal self-management resource should encourage pain reporting, build patients’ sense of control, and support communication with providers and coordination between services. Each of these characteristics was identified as important in overcoming established barriers to cancer pain care. A pain self-management resource was developed to include: (1) a template for setting specific, measureable, achievable, relevant and time-bound goals of care, as well as identifying potential obstacles and ways to overcome these; and (2) a pain management plan detailing exacerbating and alleviating factors, current strategies for management, and contacts for support.
Significance of resultsSelf-management resources have the potential for addressing barriers not only at the patient level, but also at provider and health system levels. A cluster randomized controlled trial is under way to test effectiveness of the resource designed in this project in combination with pain screening, audit and feedback, and provider education. More research of this kind is needed to understand how interventions at different levels can be optimally combined to overcome barriers and improve care.
Review Article
A scoping review of palliative care for persons with severe persistent mental illness
- Erin E. Donald, Kelli I Stajduhar
-
- Published online by Cambridge University Press:
- 19 March 2019, pp. 479-487
-
- Article
- Export citation
-
Objective
People with severe persistent mental illness (SPMI) experience a greater burden and severity of chronic disease, late diagnosis, and premature death compared with the general population. Those with SPMI also receive fewer medical treatments, poor quality of care, and are less likely to receive palliative care. A systematic scoping review was undertaken to determine the extent, range, and nature of research activity about people with SPMI requiring palliative care, and to identify gaps and opportunities for future research.
MethodA systematic scoping review was undertaken in September 2017 and updated in May 2018 to map literature on this topic, determine the extent and range of what has been published, and report the findings. This five-stage framework was conducted by (1) identifying the research question; (2) identifying relevant studies; (3) determining study selection; (4) charting the data; and 5) collating, summarizing, and reporting the results. A narrative approach to analysis was used to synthesize and interpret findings. A search of multidisciplinary healthcare databases resulted in 46 included articles.
ResultFour major themes were identified from the included studies: complexity of care; limited access to care (both through systems and healthcare providers); competence and autonomy; and the potential for relationships between mental health and palliative care.
Significance of resultsThis review reveals a highly vulnerable population with complex needs that are not reliably being met by the healthcare system and providers. Research in this area must continue to develop using rigorous qualitative and quantitative study designs, and interventions should be developed and tested based on existing knowledge to inform care. The voices of people with SPMI in need of palliative care must be represented in future studies to address gaps. To expand a body of literature addressing mainly individuals, system perspectives and sociocultural analysis can bring much to contextualizing the experience of living with SPMI in the palliative phase of care. Adoption of a palliative approach, which promotes the principles of palliative care across nonspecialized care settings provided by nonspecialist palliative providers, has the potential to increase access to high-quality palliative treatment for people with SPMI.
Case Report
A case report of the efficacy and usefulness of asenapine in the treatment of a cancer patient with delirium and aphagia
- Kyoko Osawa, Satoshi Ukai, Toshiyuki Kuriyama
-
- Published online by Cambridge University Press:
- 26 December 2018, pp. 488-491
-
- Article
- Export citation
-
Objective
Controlling hyperactive and mixed delirium is extremely important for the continuation of cancer treatment in palliative care. In general, oral antipsychotics are the first-line drug therapy for delirium; however, oral administration is problematic in patients presenting dysphagia. In this case report, we describe an end-stage cancer patient with aphagia who developed delirium and responded to sublingual antipsychotic asenapine for treating delirium. We also discuss the effectiveness of asenapine in hyperactive delirium as well as its usefulness for treating delirium in palliative care.
MethodA cancer patient with delirium was treated with several oral antipsychotics commonly used to treat delirium but did not respond to any of them. The patient subsequently developed aphagia with progression of the disease. Sublingual asenapine was therefore given to treat delirium.
ResultAsenapine was effective in treating delirium without causing any obvious side effects.
Significance of resultsIn the present case, asenapine was effective in treating hyperactive delirium that did not respond to commonly used antipsychotics. Because asenapine is a sublingual tablet, it can be used in patients with dysphagia and aphagia. In addition, this drug is anticipated to diminish the burden of end-stage patients from taking oral medications. Furthermore, its management is easier compared with injections, and can therefore also be easily used in homecare patients. Based on these perspectives, asenapine may become an important option for treating delirium in palliative care.
Essay/Personal Reflection
A Letter to Robert
- Paul Rousseau
-
- Published online by Cambridge University Press:
- 06 March 2019, p. 492
-
- Article
- Export citation