Supporting the Needs of Adolescents and Young Adults: Integrated Palliative Care and Psychiatry Clinic for Adolescents and Young Adults with Cancer
Oncology
Clinical guidelines aimed at cancer care for adolescents and young adults (AYAs) encour-age early integration of palliative care, yet there are scarce data to support these recommendations. We conducted a retrospective chart review of AYA patients, aged 15 to 39 years, who were referred to the Integrated AYA Palliative Care and Psychiatry Clinic (IAPCPC) at the Princess Margaret Cancer Centre between May 2017 and November 2019 (n = 69). Demographic data, symptom prevalence, change in symptom scores between baseline consultation and first follow-up, and intensity of end-of-life care were collected from the patients' medical charts, analyzed, and reported. Of the 69 pa-tients, 59% were female, and sarcoma was the most common cancer. A majority of patients had at least one symptom scored as moderate to severe; tiredness, pain, and sleep problems were the high-est scored symptoms. More than one-third used medical cannabis to manage their symptoms. Symptom scores improved in 61% after the first clinic visit. Out of the 69 patients, 50 (72.5%) had died by October 2020, with a median time between the initial clinic referral and death of 5 months (range 1-32). Three patients (6%) received chemotherapy, and eight (16%) were admitted to an in-tensive care unit during the last month of life. In conclusion, AYAs with advanced cancer have a high burden of palliative and psychosocial symptoms. Creating a specialized AYA palliative care clinic integrated with psychiatry showed promising results in improving symptom scores and end-of-life planning. Copyright © 2021 by the authors. Licensee MDPI, Basel, Switzerland. This arti-.
Abdelaal M; Mosher PJ; Gupta A; Hannon B; Cameron C; Berman M; Moineddin R; Avery J; Mitchell L; Li M; Zimmermann C; Al-Awamer A
Cancers
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/cancers13040770" target="_blank" rel="noreferrer noopener">10.3390/cancers13040770</a>
Palliative care for adolescents and young adults with advanced illness: A scoping review
Adolescent; Young Adults;End-of-Life; Palliative Care; Psychosocial; Symptom Management
BACKGROUND: Age-related complex medical conditions have been commonly reported among adolescents and young adults with advanced life-limiting illness. There is increasing interest in exploring their palliative care needs and end-of-life experiences. AIM: This scoping review aimed to explore the available literature about providing palliative and end-of-life care to adolescents and young adults with advanced life-limiting illnesses. DESIGN: Scoping review. This review was registered on Open Science Framework (https://doi.org/10.17605/OSF.IO/SPTD7). DATA SOURCES: Electronic databases (MEDLINEALL, Embase, Emcare, Cochrane Central Register of Controlled Trial CENTRAL, Scopus, PsycINFO, Cochrane Database of Systematic Reviews), Google Scholar and reference lists were searched up to October 2021. We included studies reporting on adolescents and/or young adults with advanced life-limiting illnesses. There were no limitations concerning location, type of illness or study design. RESULTS: We identified 51 studies published between 2002 and 2021. Most studies were published in the United States (n = 34, 67%), and nine studies (18%) reported exclusively on patients with non-malignant illnesses. Two thirds of the identified studies were case reports and retrospective chart reviews (n = 33). Three main topics were identified: Physical symptom burden (n = 26, 51%), Psychological and social needs (n = 33, 65%), and end-of-life care (n = 30, 59%). Twenty-six studies (51%) were focused only on one topic, and the age range used to identify adolescents and young adults varied based on the study location. CONCLUSION: The findings of this review shed light on the different palliative care experiences and knowledge gaps related to adolescents and young adults as an underserved and vulnerable patient population. Further research needs to be dedicated toward palliative care programs tailored for adolescents and young adults.
Abdelaal M; Avery J; Chow R; Saleem N; Fazelzad R; Mosher P; Hannon B; Zimmermann C; Al-Awamer A
Palliative Medicine
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/02692163221136160" target="_blank" rel="noreferrer noopener">10.1177/02692163221136160</a>
Referral practices of pediatric oncologists to specialized palliative care
referral and consultation; oncology; attitude of health personel
PURPOSE: The aims of this study are to describe the attitudes and referral practices of pediatric oncologists (POs) to specialized palliative care (SPC), and to compare them with those of adult oncologists (AOs). METHODS: Canadian members of the American Society of Pediatric Hematology/Oncology (ASPHO), Canadian Association of Medical Oncologists (CAMO), Canadian Association of Radiation Oncologists (CARO), and the Canadian Society of Surgical Oncology (CSSO) participated in an anonymous survey assessing SPC referral practices. RESULTS: The response rate was 70 % (646/921), 52 % (43/82) for ASPHO members; 5 CARO members self-identified as POs, for a total of 48 POs and 595 AOs. Ninety-six percent of POs had access to inpatient SPC consultation services (vs. 48 % AOs), 31 % to a PCU (vs. 82 % AOs), and 27 % to an outpatient SPC clinic (vs. 73 % AOs). POs more often stated their SPC services accepted patients on chemotherapy than AOs (64 vs. 37 %, p = 0.0004). POs were less likely to refer only after chemotherapy had been stopped (13 vs. 29 % for AOs) and more likely to state that ideally referral should occur at the diagnosis of cancer/incurable cancer (73 vs. 43 %). POs were more likely to agree they would refer earlier if palliative care were renamed "supportive care" (58 vs. 33 %, p < 0.0001), that palliative care adds too many providers (17 vs. 7 %, p = 0.002), and that palliative care was perceived negatively by their patients (60 vs. 43 %, p = 0.02). CONCLUSIONS: Although POs acknowledge the importance of early referral to SPC for children with cancer, there remain resource and attitudinal barriers to overcome in this regard.
2014-09
Wentlandt K; Krzyzanowska MK; Swami N; Rodin G; Le Lisa W; Sung L; Zimmermann C
Supportive Care In Cancer : Official Journal Of The Multinational Association Of Supportive Care In Cancer
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1007/s00520-014-2203-6" target="_blank" rel="noreferrer">10.1007/s00520-014-2203-6</a>
Review: the quality of dying and death: a systematic review of measures
Q3 Literature Search
To determine whether modern medicine is facilitating 'good' deaths, appropriate measures of the quality of dying and death must be developed and utilized. The purpose of this paper is to identify quality of dying and death measurement tools and to determine their quality. MEDLINE (1950-2008), Healthstar (1966-2008), and CINAHL (1982-2008) were searched using keyword terms 'quality of dying/death' and 'good/bad death'. Papers that described a quality of dying and death measure or that aimed to measure the quality of dying and death were selected for review. The evaluation criteria included a description of the measure development (validated or ad hoc), the provision of a definition of quality of dying and death, an empirical basis for the measure, the incorporation of multiple domains and the subjective nature of the quality of dying and death construct, and responsiveness to change. Eighteen measures met the selection criteria. Six were published with some description of the development process and 12 were developed ad hoc. Less than half were based on an explicit definition of quality of dying and death and even fewer relied on a conceptual model that incorporated multidimensionality and subjective determination. The specified duration of the dying and death phase ranged from the last months to hours of life. Of the six published measures reviewed, the Quality of Dying and Death questionnaire (QODD) is the most widely studied and best validated. Strategies to measure the quality of dying and death are becoming increasingly rigorous. Further research is required to understand the factors influencing the ratings of the quality of dying and death.
2010
Hales S; Zimmermann C; Rodin G
Palliative Medicine
2010
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/0269216309351783" target="_blank" rel="noreferrer">10.1177/0269216309351783</a>
Predictors of Referral for Specialized Psychosocial Oncology Care in Patients With Metastatic Cancer: The Contributions of Age, Distress, and Marital Status
PURPOSE: This study examines the rate and prediction of referral for specialized psychosocial oncology care in 326 patients with metastatic GI or lung cancer. PATIENTS AND METHODS: Referral information was abstracted from medical records and hospital databases. Patients completed measures of psychosocial and physical distress and functioning. RESULTS: Routine referral occurred in 33% of patients, and in 42% and 44%, respectively, of those scoring high on measures of depression (Beck Depression Inventory [BDI]-II >/= 15) and hopelessness (Beck Hopelessness Scale >/= 8). Univariate analyses indicated that referral was associated with younger age, unmarried status, living alone, presence of more depressive symptoms, hopelessness, and attachment anxiety, and with less social support, self-esteem, and spiritual well-being (all P /= 15), 100% of those less than 40 years of age, but only 22% of those age 70 years or older were referred. Multivariate analyses indicated that referral was associated with younger age, unmarried status, and presence of more depressive symptoms. Moreover, increasing age was associated with a progressively lower likelihood of referral independent of the level of distress. CONCLUSION: Routine referral of patients with metastatic cancer for psychosocial oncology care was predicted by presence of more severe depressive symptoms, younger age, and unmarried status. The rate of referral progressively declined with each decade of age, even among those with significant distress. These findings are consistent with some aspects of Andersen's model of health care utilization. The extent to which referred patients represent those who are most likely to benefit deserves further investigation.
2008
Ellis J; Lin J; Walsh A; Lo C; Shepherd FA; Moore M; Li M; Gagliese L; Zimmermann C; Rodin G
Journal Of Clinical Oncology
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1200/JCO.2007.15.4864" target="_blank" rel="noreferrer">10.1200/JCO.2007.15.4864</a>
Denial of impending death: a discourse analysis of the palliative care literature
Humans; Palliative Care; Canada; Attitude to Death; Denial (Psychology)
Terminally ill patients and their families are often referred to as being "in denial" of impending death. This study uses the qualitative method of discourse analysis to investigate the usage of the term "denial" in the contemporary hospice and palliative care literature. A Medline search (1970-2001) was performed combining the text words "deny" and "denial" with the subject headings "terminal care", "palliative care" and "hospice care," and restricted to English articles discussing death denial in adults. The 30 articles were analysed using a constant comparison technique and emerging themes regarding the meaning and usage of the words "deny" and "denial" identified. This paper focusses on the theme of denial as an individual psychological process. Three dominant subthemes were distinguished: denial as an unconscious "defence mechanism", denial as "healthy" and denial as temporary. The analysis focusses on the intertextuality of these themes with each other and with previous texts on the denial of death. Elements of the psychoanalytic definition of denial as an unconscious defence mechanism are retained in the literature but are interwoven with new themes on patient choice. The result is an overall discourse that is conflictual and at times self-contradictory but overall consistent with the biomedical model of illness. I suggest that the representation of death denial elaborated in these articles may be related to a larger discourse on dying in contemporary Western society, which both invites patients to participate in the planning of their death and labels those who do not comply.
2004
Zimmermann C
Social Science & Medicine
2004
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.socscimed.2004.02.012" target="_blank" rel="noreferrer">10.1016/j.socscimed.2004.02.012</a>