BACKGROUND: Early, high-quality serious illness (SI) conversations are critical for patients with glioblastoma (GBM) but are often mistimed or mishandled.
OBJECTIVE: To describe the prevalence, timing, and quality of documented SI conversations and evaluate their focus on patient goals/priorities.
DESIGN/PARTICIPANTS: Thirty-three patients with GBM enrolled in the control group of a randomized controlled trial of a communication intervention and were followed for 2 years or until death. At baseline, all patients answered a validated question about preferences for life-extending versus comfort-focused care and completed a Life Priorities Survey about their goals/priorities. In this secondary analysis, retrospective chart review was performed for 18 patients with GBM who died. Documented SI conversations were systematically identified and evaluated using a codebook reflecting 4 domains: prognosis, goals/priorities, end-of-life planning, and life-sustaining treatments. Patient goals/priorities were compared to documentation.
MEASUREMENTS/RESULTS: At baseline, 16 of 24 patients preferred life-extending care. In the Life Priorities Survey, goals/priorities most frequently ranked among the top 3 were "Live as long as possible," "Be mentally aware," "Provide support for family," "Be independent," and "Be at peace." Fifteen of 18 patients had at least 1 documented SI conversation (range: 1-4). Median timing of the first documented SI conversation was 84 days before death (range: 29-231; interquartile range: 46-119). Fifteen patients had documentation about end-of-life planning, with "hospice" and "palliative care" most frequently documented. Five of 18 patients had documentation about their goals.
CONCLUSION: Patients with GBM had multiple goals/priorities with potential treatment implications, but documentation showed SI conversations occurred relatively late and infrequently reflected patient goals/priorities.
CONTEXT: Chronic pain (CP) is a major concern in cancer survivors. Often underreported by patients, it is both under-assessed and undertreated by care providers.
OBJECTIVES: To assess CP prevalence and related treatment in cancer survivors five years after diagnosis; to identify factors associated with prescribing opioids among survivors with CP, focusing on access to palliative care (PC).
METHODS: In 2015-2016, we interviewed 4,174 French patients diagnosed with cancer five years previously. Combining patient and clinical reported outcomes together with medico-administrative data, we studied factors associated with Step II and Step III opioid prescription in cancer survivors with CP. We performed multinomial logistic regression adjusting for various covariates, including self-reported health status variables and inpatient PC.
RESULTS: Five years after cancer diagnosis, 63.5% of the respondents reported current chronic pain (CP) (i.e., pain = 3 months). Of these, 64.6% and 14.4% were prescribed at least one Step II or Step III opioid, respectively. Only 1.9% had had inpatient PC since diagnosis. After adjustment for age, gender, clinical and self-reported variables, we found that the latter were more likely to receive Step III opioids (adjusted Relative Risk ratio: 5.33; 95% CI: 1.15, 24.58).
CONCLUSIONS: This study showed a high prevalence of CP five years after cancer diagnosis. Step III opioids were underprescribed but positively associated with inpatient PC. PC access in France remains limited, especially among cancer survivors. Integrating PC in oncology is essential to provide the best cancer-related symptoms management.
OBJECTIVE: The purpose of the current study was to use a mixed-methods approach to assess the perspective of cancer survivors on the bidirectional impact between cancer and their social contexts.
METHOD: A fixed concurrent triangulation mixed-methods survey design was used with open- and closed-ended questions that were predetermined and administered to participants. Quantitative items included demographic questions and the Life Impact Checklist. Qualitative questions were designed to explore the bidirectional impact between the patient and specific contexts including spirituality/faith, the spousal/partner relationship, and the family. A cross-sectional descriptive approach was used to evaluate the quantitative items and the constant comparative method guided the analysis of open-ended questions.Result Among 116 participants (mean age 58.4 years), the majority were female (66.7%) with breast cancer (27.9%). Nearly one-half the respondents endorsed a positive impact of cancer on their spirituality/faith, but qualitative results suggested less of a bidirectional impact. The importance of the spouse/partner during the cancer experience was emphasized, including the subthemes of instrumental and emotional support; however, there was often a negative impact of cancer on the spouse/partner relationship, including sexual functioning. Survivors indicated family members provided instrumental and emotional support, but not as regularly or directly as a spouse/partner.Significance of results Social contexts are important among cancer survivors, with many cancer survivors relying more on their spouse/partner than other family members for support. The cancer experience is stressful not only for survivors, but also for individuals in their social contexts and relationships.
BACKGROUND: Symptoms of anxiety and depression and their comorbidity in parents of children diagnosed with cancer, particularly later in the cancer trajectory, need further study. The aim was to investigate the prevalence and predictors of symptoms of anxiety and depression in parents of childhood cancer survivors and bereaved parents, five years after end of treatment or a child's death and to investigate comorbidity between symptoms of anxiety, depression and posttraumatic stress.
MATERIAL AND METHODS: Participants were 132 parents (68 mothers, 64 fathers) of survivors and 37 bereaved parents (20 mothers, 17 fathers). Chi-square test and t-test were used to explore differences in symptoms of anxiety and depression. Comorbidity was explored using Pearson's correlations and Chi-square test. Multivariable hierarchical linear regressions were used to identify predictors of symptoms of anxiety and depression.
RESULTS: In parents of survivors, 20% reported anxiety and 14% reported depression. Corresponding figures among bereaved parents were 30% and 35%. Among parents of survivors reporting clinically relevant anxiety and depression, a larger proportion were mothers than fathers. No such difference was found among bereaved parents. Symptoms of anxiety, depression and posttraumatic stress were highly correlated (all r = 0.65, p < .001). Comorbid symptoms were reported by 7–11% of parents of survivors and 14–24% of bereaved parents. In multivariable analyses, more severe symptoms of depression were associated with anxiety, posttraumatic stress and distress related to previous stressful life events. Being a mother, symptoms of depression and posttraumatic stress were associated with more severe symptoms of anxiety.
CONCLUSION: A subset of parents report clinically elevated symptoms of anxiety and depression, comorbid anxiety, depression and posttraumatic stress. Experiencing distress related to previous stressful life events as well as concurrent comorbidity were associated with more severe psychological distress at five years after end of treatment/a child's death. These results deserve further attention in research and clinical care.
CONTEXT: Chronic pain, or pain lasting > 3 months, is common among cancer survivors, who are often prescribed long-term opioid therapy (LTOT).
OBJECTIVE: Our objective was to explore palliative care providers' experiences with managing chronic pain in cancer survivors prescribed LTOT, specifically in ambulatory palliative care settings, and their strategies for overcoming challenges.
METHODS: We recruited providers through leading national palliative care organizations who manage chronic pain in cancer survivors. Asked to consider only cancer survivors with chronic pain when responding, participants completed an online survey that included questions about use of opioid risk mitigation tools, confidence in addressing opioid misuse behaviors and discussing/recommending management approaches, and access to addiction treatment.
RESULTS: Of 157 participants, most were physicians (83%) or nurse practitioners (15%). Most reported using opioid risk mitigation tools such as urine drug testing (71%), opioid treatment agreements (85%), and practitioner database monitoring programs (94%). Participants were confident (7-8/10) managing the most commonly encountered opioid misuse behaviors (missing appointments, marijuana use, and using more opioids than prescribed) and in their ability to recommend non-pharmacologic and non-opioid pharmacologic treatments for chronic pain (10/10). They were least confident prescribing naloxone or managing addiction (5/10); only 27% reported having training or systems in place to address addiction. Only 13% had a waiver to prescribe buprenorphine.
CONCLUSION: Palliative care providers are comfortable with many aspects of managing chronic pain in cancer survivors on LTOT, although challenges persist, including the lack of systems-based approaches and training in addiction treatment.
BACKGROUND: To improve the management of advanced cancer patients with delirium in an emergency department (ED) setting, we compared outcomes between patients with delirium positively diagnosed by both the Confusion Assessment Method (CAM) and Memorial Delirium Assessment Scale (MDAS), or group A (n = 22); by the MDAS only, or group B (n = 22); and by neither CAM nor MDAS, or group C (n = 199).
MATERIALS AND METHODS: In an oncologic ED, we assessed 243 randomly selected advanced cancer patients for delirium using the CAM and the MDAS and for presence of advance directives. Outcomes extracted from patients’ medical records included hospital and intensive care unit admission rate and overall survival (OS).
RESULTS: Hospitalization rates were 82%, 77%, and 49% for groups A, B, and C, respectively (p = .0013). Intensive care unit rates were 18%, 14%, and 2% for groups A, B, and C, respectively (p = .0004). Percentages with advance directives were 52%, 27%, and 43% for groups A, B, and C, respectively (p = .2247). Median OS was 1.23 months (95% confidence interval [CI] 0.46–3.55) for group A, 4.70 months (95% CI 0.89–7.85) for group B, and 10.45 months (95% CI 7.46–14.82) for group C. Overall survival did not differ significantly between groups A and B (p = .6392), but OS in group C exceeded those of the other groups (p < .0001 each).
CONCLUSION: Delirium assessed by either CAM or MDAS was associated with worse survival and more hospitalization in patients with advanced cancer in an oncologic ED. Many advanced cancer patients with delirium in ED lack advance directives. Delirium should be assessed regularly and should trigger discussion of goals of care and advance directives.
IMPLICATIONS FOR PRACTICE: Delirium is a devastating condition among advanced cancer patients. Early diagnosis in the emergency department (ED) should improve management of this life-threatening condition. However, delirium is frequently missed by ED clinicians, and the outcome of patients with delirium is unknown. This study finds that delirium assessed by the Confusion Assessment Method or the Memorial Delirium Assessment Scale is associated with poor survival and more hospitalization among advanced cancer patients visiting the ED of a major cancer center, many of whom lack advance directives. Therefore, delirium in ED patients with cancer should trigger discussion about advance directives.
Advances in the medical treatment of cancer have increased the number of survivors, particularly among older adults, who now represent the majority of these. Survivorship care plans (SCPs) are documents that cancer patients receive summarising their care, usually at the end of treatment but preferably from initial diagnosis. These may increase patient satisfaction and represent an opportunity to initiate preventative strategies and address future care needs. Advance care planning (ACP), incorporating advance healthcare decision-making, including formal written directives, increases satisfaction and end-of-life care.
This paper systematically reviews evaluations of ACP within SCPs among older (=65 years) cancer survivors. No studies meeting the inclusion criteria were identified by search strategies conducted in PubMed/MEDLINE and the Cochrane databases. One paper examined cancer survivors’ mainly positive views of ACP. Another discussed the use of a SCP supported by a ‘distress inventory’ that included an advance care directive (living will) as an issue, though no formal evaluation was reported. Although ACP is important for older adults, no study was found that evaluated its role within survivorship care planning. Despite the risk of recurrence and the potential for morbidity and mortality, especially among older cancer survivors, ACP is not yet a feature of SCPs.
Background: Acute myeloid leukemia (AML) is one of the most common types of leukemia in adults, but there is limited information on survivors' quality of life (QOL) after remission.
Objective: We piloted a survey exploring patient-reported outcomes for people with AML in first complete remission (CR1) to determine whether patients felt the survey is relevant to their well-being and to summarize patient characteristics.
Design/Measurements: Cross-sectional survey of a convenience sample of AML patients in CR1 assessing QOL and functioning (European Organization for Research and Treatment of Cancer [EORTC] QLQ-C30 v 3.0), well-being (QOL-cancer survivor [QOL-CS]), fatigue (Functional Assessment of Chronic Illness Therapy-Fatigue [FACIT-Fatigue]), and anxiety and depression (hospital anxiety and depression scale [HADS]). The survey contained five open-ended questions.
Results: Eighteen patients completed the survey. Most felt it was completely or mostly relevant (88.8%) in describing their QOL. Participants scored well on the EORTC QLQ-C30, fatigue being the most common symptom (83%).The FACIT-Fatigue mean score was 28.7 and median score was 33.5 (normal =30). Two scored in the abnormal range for anxiety and one for depression on the HADS. On the QOL-CS, participants scored more than 6 out of 10 in most domains, except the subscales of distress and fear.
Conclusions: The survey content and length were appropriate. Patients reported ongoing fatigue, fears of future test results, getting a second cancer, and recurrence of cancer. Survivors experience ongoing symptoms, highlighting the importance of providers performing ongoing symptom and needs assessments.
The palliative care approach for survivors begins with comprehensive assessment of communication and advance care planning needs and the physical, psychological and psychiatric, social, spiritual and religious, and cultural domains. Communication and decision-making about difficult issues should include responding to emotions, planning for future communication needs, and considering reasons for miscommunication. Key palliative approaches to symptom management include addressing physical and psychosocial concerns, and using nonpharmacologic approaches first or together with medications. Physicians should address advance care planning in older cancer survivors and those at significant risk of recurrence and mortality, ideally through ongoing conversations in a longitudinal care relationship.
Interview d'Aymeric, 25 ans, qui a 20 ans fut atteint d'un lymphome B non hodgkinien à cellules très agressives. Il connut une première rémission à l'issue de 8 mois de traitements chimiothérapiques. Dix mois plus tard, il rechuta et suivit à nouveau un protocole chimiothérapique, cette fois-ci plus lourd. Depuis 3 ans, il est en rémission.
[Adapté de l'introduction]
Cette étude descriptive et corrélationnelle examine les relations entre les tensions des aidants, leur qualité de vie et les symptômes de détresse ainsi que la qualité de vie des survivants parmi les dyades de survivants afro-américains et de leur principal dispenseur de soins.
Trois femmes - l'épouse, le médecin et la psychologue - nous font partager leurs interrogations, leurs doutes, mais aussi leurs convictions face à la maladie grave qu'est le cancer : faut-il dire toute la vérité ? Faut-il parler différemment à la famille et au malade ? Comment vivre au jour le jour ? Faut-il se préparer au deuil ? Comment se dire au revoir ?
Un livre spontané et émouvant pour aider ceux qui doivent affronter la maladie à garder l'espoir et à voir plus clair en eux.
Le questionnement éthique a pour objectif de concillier en pratique, à propos de chaque personne en fin de vie, les positions d'autonomie et de bienfaisance. Ceci n'est pas aisé, il faut alors s'aider des autres principes éthiques, du code de déontologie et surtout de la réflexion personnelle de chaque soignant.
Les principes ne peuvent servir que de fil conducteur à des décisions éthiques de fin de vie particulièrement difficiles.
S'adapter à la sclérose en plaques (SEP) constitue un défi renouvelé au quotidien. La conceptualisation du processus d'adaptation pour les personnes atteintes de SEP à partir des théories sur le deuil permet une réflexion ouvrant sur des pistes d'intervention. Les caractéristiques spécifiques de l'adaptation à la SEP sont décrites pour faire le lien entre les principales étapes du processus, ses dérives et ses impasses qui sont définies comme des troubles de l'adaptation. Selon la littérature récente, le sens est déterminant dans l'adaptation réussie et la résilience. Des études tendent à montrer que les troubles d'adaptation chez les personnes atteintes de SEP sont moins fréquents lorsqu'elles parviennent à donner un sens à leur maladie. D'où la pertinence de faciliter l'adaptation par la recherche de sens. La présentation d'une activité de groupe illustre une telle intervention en réadaptation. [Résumé auteur]
L'auteur raconte dans un style indirect son histoire : chef d'entreprise et père de famille sans histoire, on lui révèle qu'il est atteint d'une forme rare de cancer, le Lymphome de Burkitt. Bien qu'ayant une chance sur trois seulement de s'en sortir et trois mois restants à vivre, il va se battre durant trois ans non seulement contre la maladie, mais contre le monde qui l'entoure et le rejette ou tente de profiter de son état.
Ce film présente le parcours de personnes atteintes de cancer. Ce documentaire est composé de trois portraits organisés selon l'évolution de la maladie : incertitude, mort annoncée et rémission. Le but de cette diffusion est de montrer au public comment vivre avec sur la conscience la présence de la maladie ou sa possible réapparition...
S'appuyant sur leurs années d'expérience en tant que médecins auprès d'enfants gravement malades et de leurs familles, les auteurs souhaitent ici guider les proches des enfants atteints de cancer tout au long de la maladie. Ainsi, du diagnostic, à la rémission tout en considérant les phases de récidives et la possibilité de la mort de l'enfant, ce livre apporte de manière humaine et réaliste du soutien psychologique et de l'aide pratique aux parents et amis des jeunes patients. Des sections concernent les familles monoparentales, la maladie chez les adolescents et le deuil des parents après la mort.