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PURPOSE: Although early palliative care is recommended, resource limitations prevent its routine implementation. We report on the preliminary findings of a mixed methods study involving a randomized controlled trial (RCT) of Symptom screening with Targeted Early Palliative care (STEP) and qualitative interviews. METHODS: Adults with advanced solid tumors and an oncologist-estimated prognosis of 6-36 months were randomized to STEP or symptom screening alone. STEP involved symptom screening at each outpatient oncology visit; moderate to severe scores triggered an email to a palliative care nurse, who offered referral to in-person outpatient palliative care. Patient-reported outcomes of quality of life (FACT-G7; primary outcome), depression (PHQ-9), symptom control (ESAS-r-CS), and satisfaction with care (FAMCARE P-16) were measured at baseline and 2, 4, and 6 months. Semi-structured interviews were conducted with a subset of participants. RESULTS: From Aug/2019 to Mar/2020 (trial halted due to COVID-19 pandemic), 69 participants were randomized to STEP (n = 33) or usual care (n = 36). At 6 months, 45% of STEP arm patients and 17% of screening alone participants had received palliative care (p = 0.009). Nonsignificant differences for all outcomes favored STEP: difference in change scores for FACT-G7 = 1.67 (95% CI: -1.43, 4.77); ESAS-r-CS = -5.51 (-14.29, 3.27); FAMCARE P-16 = 4.10 (-0.31, 8.51); PHQ-9 = -2.41 (-5.02, 0.20). Sixteen patients completed qualitative interviews, describing symptom screening as helpful to initiate communication; triggered referral as initially jarring but ultimately beneficial; and referral to palliative care as timely. CONCLUSION: Despite lack of power for this halted trial, preliminary results favored STEP and qualitative results demonstrated acceptability. Findings will inform an RCT of combined in-person and virtual STEP.
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COVID-19 , Neoplasias , Adulto , Humanos , Cuidados Paliativos/métodos , Detecção Precoce de Câncer , Neoplasias/terapia , Neoplasias/patologia , Qualidade de VidaRESUMO
OBJECTIVES: Minimal information is available about the quality of dying and death in Uganda and Kenya, which are African leaders in palliative care. We investigated the quality of dying and death in patients with advanced cancer who had received hospice care in Uganda or Kenya. METHODS: Observational study with bereaved caregivers of decedents (Uganda: n = 202; Kenya: n = 127) with advanced cancer who had received care from participating hospices in Uganda or Kenya. Participants completed the Quality of Dying and Death questionnaire and a measure of family satisfaction with cancer care (FAMCARE). RESULTS: Quality of Dying and Death Preparation and Connectedness subscales were most frequently rated as good to almost perfect for patients in both countries (45.5% to 81.9%), while Symptom Control and Transcendence subscales were most frequently rated as intermediate (42.6% to 60.4%). However, 35.4% to 67.7% of caregivers rated overall quality of dying and overall quality of death as terrible to poor. Ugandan caregivers reported lower Preparation, Connectedness, and Transcendence (p < .001). Controlling for covariates, overall quality of dying was associated with better Symptom Control in both countries (p < .001) and Transcendence in Uganda (p = .010); overall quality of death, with greater Transcendence in Uganda (p = .004); and family satisfaction with care, with better Preparation in Uganda (p = .004). SIGNIFICANCE OF RESULTS: Findings indicate strengths in spiritual and social domains of the quality of dying and death in patients who received hospice care in Uganda and Kenya, but better symptom control is needed to improve this outcome in these countries.
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BACKGROUND: Routine early palliative care (EPC) improves quality of life (QoL) for patients with advanced cancer, but it may not be necessary for all patients. We assessed the feasibility of Symptom screening with Targeted Early Palliative care (STEP) in a phase II trial. METHODS: Patients with advanced cancer were recruited from medical oncology clinics. Symptoms were screened at each visit using the Edmonton Symptom Assessment System-revised (ESAS-r); moderate to severe scores (screen-positive) triggered an email to a palliative care nurse, who called the patient and offered EPC. Patient-reported outcomes of QoL, depression, symptom control, and satisfaction with care were measured at baseline and at 2, 4, and 6 months. The primary aim was to determine feasibility, according to predefined criteria. Secondary aims were to assess whether STEP identified patients with worse patient-reported outcomes and whether screen-positive patients who accepted and received EPC had better outcomes over time than those who did not receive EPC. RESULTS: In total, 116 patients were enrolled, of which 89 (77%) completed screening for ≥70% of visits. Of the 70 screen-positive patients, 39 (56%) received EPC during the 6-month study and 4 (6%) received EPC after the study end. Measure completion was 76% at 2 months, 68% at 4 months, and 63% at 6 months. Among screen-negative patients, QoL, depression, and symptom control were substantially better than for screen-positive patients at baseline (all P<.0001) and remained stable over time. Among screen-positive patients, mood and symptom control improved over time for those who accepted and received EPC and worsened for those who did not receive EPC (P<.01 for trend over time), with no difference in QoL or satisfaction with care. CONCLUSIONS: STEP is feasible in ambulatory patients with advanced cancer and distinguishes between patients who remain stable without EPC and those who benefit from targeted EPC. Acceptance of the triggered EPC visit should be encouraged. CLINICALTRIALS: gov identifier: NCT04044040.
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Neoplasias , Qualidade de Vida , Detecção Precoce de Câncer , Humanos , Neoplasias/diagnóstico , Neoplasias/terapia , Cuidados Paliativos , Medidas de Resultados Relatados pelo PacienteRESUMO
BACKGROUND: The legal criteria for medical assistance in dying (MAiD) for adults with a grievous and irremediable medical condition were established in Canada in 2016. There has been concern that potentially reversible states of depression or demoralization may contribute to the desire for death (DD) and requests for MAiD. However, little is known about the emergence of the DD in patients, its impact on caregivers, and to what extent supportive care interventions affect the DD and requests for MAiD. The present observational study is designed to determine the prevalence, predictors, and experience of the DD, requests for MAiD and MAiD completion in patients with advanced or metastatic cancer and the impact of these outcomes on their primary caregivers. METHODS: A cohort of patients with advanced or metastatic solid tumour cancers and their primary caregivers will be recruited from a large tertiary cancer centre in Toronto, Ontario, Canada, to a longitudinal, mixed methods study. Participants will be assessed at baseline for diagnostic information, sociodemographic characteristics, medical history, quality of life, physical and psychological distress, attitudes about the DD and MAiD, communication with physicians, advance care planning, and use of psychosocial and palliative care interventions. Measures will subsequently be completed every six months and at the time of MAiD requests. Quantitative assessments will be supplemented by qualitative interviews in a subset of participants, selected using quota sampling methods. DISCUSSION: This study has the potential to add importantly to our understanding of the prevalence and determinants of the DD, MAiD requests and completions in patients with advanced or metastatic cancer and of the experience of both patients and caregivers in this circumstance. The findings from this study may also assist healthcare providers in their conversations about MAiD and the DD with patients and caregivers, inform healthcare providers to ensure appropriate access to MAiD, and guide modifications being considered to broaden MAiD legislation and policy.
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Neoplasias , Suicídio Assistido , Adulto , Canadá , Cuidadores , Humanos , Estudos Longitudinais , Neoplasias/terapia , Estudos Observacionais como Assunto , Ontário , Qualidade de VidaRESUMO
OBJECTIVE: Attachment security protects psychological well-being in patients with advanced cancer, but its effect on death preparation in this population has not been demonstrated. We examined the relationship of attachment security to death preparation in advanced cancer and tested whether couple communication mediates this relationship and whether gender and age moderate this mediating effect, using longitudinal data from a psychotherapy trial. METHODS: Patients with advanced cancer who lived with a partner (Nbaseline = 289) completed measures of attachment security (attachment avoidance, attachment anxiety), couple communication, and death preparation (preparation for end of life, life completion) and attendant health involvement (relationship with healthcare provider). A moderated mediation model was evaluated at each time period (baseline, 3 months, and 6 months). RESULTS: Couple communication mediated the relationship of attachment security to preparation for end of life and life completion (b's = -.06 to -.10). Anxiety × Gender effects on baseline couple communication (P's = .016) indicated that women with greater attachment anxiety reported worse communication than their male counterparts. Couple-communication × Gender × Age effects on baseline preparation for end of life (P = .007-.020) suggested that women showed better preparation with better couple communication. Younger patients reported less preparation than older patients, especially with poorer communication, but their preparation increased with better communication, especially in younger men. CONCLUSIONS: Attachment security supports death preparation in advanced cancer partly through better couple communication. Couple-based psychotherapeutic interventions, especially for younger individuals and women with attachment anxiety, may facilitate constructive conversations and death preparation.
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Ansiedade/psicologia , Cuidadores/psicologia , Neoplasias/psicologia , Cônjuges/psicologia , Doente Terminal/psicologia , Adulto , Ansiedade/etiologia , Comunicação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/complicações , Neoplasias/terapia , Apego ao Objeto , Qualidade de Vida , EspiritualidadeRESUMO
PURPOSE: We designed a novel, manualized intervention called Emotion And Symptom-focused Engagement (EASE) for acute leukemia (AL) and report here on a phase II randomized controlled trial (RCT) to assess its feasibility and preliminary efficacy. METHODS: Patients were recruited within 1 month of hospital admission and randomized to EASE plus usual care (UC) or UC alone. EASE includes (1) EASE-psy, a tailored psychotherapy delivered over 8 weeks, and (2) EASE-phys, weekly physical symptom screening over 8 weeks to trigger early palliative care. The primary outcome was traumatic stress symptoms; secondary outcomes included physical symptom burden and quality of life. Assessments were conducted at baseline and at 4, 8, and 12 weeks. Between-group differences were evaluated using multilevel modeling. RESULTS: Forty-two patients were randomized to EASE (n = 22) or UC (n = 20), with 76% retention at 12 weeks. Predefined feasibility outcomes were met: 86% (19/22) of EASE participants completed ≥ 50% of EASE-psy sessions (goal ≥ 64%); 100% received Edmonton Symptom Assessment System (ESAS, modified for AL) screenings, 64% (14/22) of whom completed ≥ 50% of planned screenings (goal ≥50%); and 100% with scores ≥ 4/10 on any physical ESAS-AL item had ≥ 1 meeting with the EASE-phys team (goal 100%). Significant treatment-group differences favoring EASE were observed in traumatic stress symptoms at 4 and 12 weeks, and pain intensity and interference at 12 weeks (all p < .05). CONCLUSIONS: EASE is feasible in patients newly diagnosed with AL and shows promise of effectiveness. These results warrant a larger RCT to provide evidence for its more routine use as a standard of care.
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Leucemia/terapia , Cuidados Paliativos/métodos , Psicoterapia/métodos , Estresse Psicológico/terapia , Avaliação de Sintomas/métodos , Doença Aguda , Adulto , Idoso , Intervenção Médica Precoce/métodos , Emoções , Estudos de Viabilidade , Feminino , Hospitalização , Humanos , Leucemia/complicações , Leucemia/psicologia , Masculino , Pessoa de Meia-Idade , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Estresse Psicológico/etiologia , Adulto JovemRESUMO
BACKGROUND: Health care providers' (HCPs) communication with cancer patients provides both information and support. Younger patient age and greater difficulty accepting support (attachment security) have been linked to poorer communication experiences with HCPs. The present secondary data analysis examined the impact of age group and attachment security on perceived communication problems with HCPs in adults with acute leukemia (AL). METHODS: The sample included 95 younger (age < 40 years) and 225 older (age ≥ 40 years) patients with newly diagnosed or recently relapsed AL. We assessed avoidant and anxious attachment security (reluctance to accept support and fear of its unavailability, respectively) with the modified 16-item Experiences in Close Relationships Scale. The impact of age group and attachment security on perceived communication problems, measured with the Cancer Rehabilitation Evaluation System-Medical Interaction Subscale, was assessed based on the presence and extent of communication problems. RESULTS: Younger patients (OR = 1.79-1.82, P = .030) and those with greater avoidant (OR = 1.44, P = .001) or anxious attachment (OR = 1.38, P = .009) were more likely to report communication problems. A similar relationship was found between age (ß's = -.17-.19, P = .015-.025), avoidant (ß = .29, P = .013), or anxious attachment (ß = .17, P = .031), and the extent of communication problems. A significant age-group × avoidant-attachment interaction (ß = -.31, P = .008) suggested that more avoidant attachment was associated with more perceived communication problems in the younger but not in the older group. CONCLUSIONS: Younger patients with AL, especially those more reluctant to seek or accept support, perceive more communication problems with their HCPs than older patients. Greater attention by HCPs to their communication with younger patients is needed.
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Ansiedade/psicologia , Mecanismos de Defesa , Leucemia/psicologia , Relações Profissional-Paciente , Adulto , Fatores Etários , Atitude Frente a Saúde , Comunicação , Feminino , Pessoal de Saúde , Humanos , Leucemia/terapia , Masculino , Pessoa de Meia-Idade , Apego ao ObjetoRESUMO
PURPOSE: Acute leukemia (AL) is associated with substantial morbidity and mortality. We assessed the prevalence and correlates of pain in patients with newly diagnosed or relapsed AL. METHODS: Patients with newly diagnosed or relapsed AL admitted to a comprehensive cancer center completed the Memorial Symptom Assessment Scale (MSAS), which assesses prevalence, severity, and distress associated with pain and other symptoms. Factors associated with severe pain were assessed using logistic regression. Two raters completed chart reviews in duplicate for patients with severe pain (MSAS severity ≥ 3/4) to determine the site of pain. RESULTS: Three hundred eighteen patients were recruited from January 2008 to October 2013: 245 (77.0%) had acute myeloid or acute promyelocytic leukemia (AML/APL) and 73 (23.0%) had acute lymphoblastic leukemia (ALL); 289 (90.9%) were newly diagnosed and 29 (9.1%) had relapsed disease. Pain was reported in 156/318 (49.2%), of whom 55/156 (35.3%) reported severe pain (≥ 3/4). Pain was associated with all psychological symptoms (all p < 0.005) and some physical symptoms. Severe pain was associated with younger age (p = 0.02), worse performance status (p = 0.04), ALL diagnosis (p = 0.04), and time from onset of chemotherapy (p = 0.03), with pain peaking at 4 weeks after chemotherapy initiation. The most common sites of severe pain were oropharynx (22; 40%), head (12; 21.8%), and abdomen (11; 20%). Only 3 patients (0.9%) were referred to the symptom control/palliative care team during the month prior to or following assessment. CONCLUSIONS: Pain is frequent, distressing, and predictable in patients undergoing induction chemotherapy for AL. Further research is needed to assess the efficacy of early supportive care in this population.
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Dor do Câncer/diagnóstico , Dor do Câncer/epidemiologia , Leucemia/complicações , Leucemia/epidemiologia , Dor/diagnóstico , Doença Aguda , Adolescente , Adulto , Idade de Início , Idoso , Idoso de 80 Anos ou mais , Dor do Câncer/etiologia , Feminino , Humanos , Leucemia/diagnóstico , Leucemia Mieloide Aguda/complicações , Leucemia Mieloide Aguda/diagnóstico , Leucemia Mieloide Aguda/epidemiologia , Leucemia Mieloide Aguda/patologia , Masculino , Pessoa de Meia-Idade , Dor/epidemiologia , Dor/etiologia , Medição da Dor , Leucemia-Linfoma Linfoblástico de Células Precursoras/complicações , Leucemia-Linfoma Linfoblástico de Células Precursoras/diagnóstico , Leucemia-Linfoma Linfoblástico de Células Precursoras/epidemiologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/patologia , Prevalência , Recidiva , Adulto JovemRESUMO
OBJECTIVE: Acute leukemia (AL) is associated with an immediate threat to life, an unpredictable clinical course, and substantial physical suffering. Traumatic stress symptoms that may meet criteria for acute stress disorder (ASD) may be common and disabling in this context, but have received little clinical attention. We investigated the incidence over time and risk factors for traumatic stress symptoms and ASD in the 3 months following diagnosis or relapse of AL. METHODS: Individuals with AL were recruited at a tertiary cancer center in Canada within one month of diagnosis or relapse. Participants (N = 230) completed self-report measures, including the Stanford Acute Stress Reaction Questionnaire, at baseline and monthly over 3 months. The incidence of traumatic stress symptoms over time was examined, and a generalized logistic model was used to identify factors associated with ASD. RESULTS: Participants were 60% male, with a mean age of 48.9 ± 15.2 years. Symptoms of ASD were identified on ≥1 assessment over the study period in 24.4% of participants at baseline and in an additional 12.6% at a subsequent follow-up. Of these, 55.3% reported symptoms on ≥2 assessments. ASD was associated with having young children, being unmarried, acute lymphocytic leukemia, and greater physical symptom burden. Persistent or recurrent ASD was associated with female sex, acute lymphocytic leukemia, greater attachment anxiety, less spiritual well-being, and less satisfactory patient-clinician communication. CONCLUSIONS: Symptoms of ASD are common and often persist or recur following diagnosis or relapse of AL. Research is urgently needed to determine the impact of interventions to prevent and treat psychological distress in this population.
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Leucemia Mieloide Aguda/psicologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Transtornos de Estresse Pós-Traumáticos/psicologia , Transtornos de Estresse Traumático Agudo/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Ansiedade , Canadá , Feminino , Humanos , Leucemia Mieloide Aguda/complicações , Masculino , Pessoa de Meia-Idade , Dor/psicologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/complicações , Estudos Prospectivos , Fatores de Risco , Transtornos de Estresse Pós-Traumáticos/etiologia , Transtornos de Estresse Traumático Agudo/etiologia , Inquéritos e Questionários , Adulto JovemRESUMO
OBJECTIVE: Acute leukemia (AL) is a life-threatening cancer associated with substantial morbidity and mortality, particularly in older adults. Given that there has been little research on the psychological impact of such malignancies with acute onset, we assessed the prevalence and correlates of depression and hopelessness in patients with AL. METHODS: Three hundred forty-one participants were recruited within 1 month of diagnosis or relapse and completed the Beck Depression Inventory-II (BDI-II), Beck Hopelessness Scale (BHS), Memorial Symptom Assessment Scale, and other psychosocial measures. Multivariate regression analyses identified correlates of depression and hopelessness. RESULTS: 17.8% reported clinically significant depressive symptoms (BDI-II ≥ 15), 40.4% of which were in the moderate-severe range (BDI-II ≥ 20). 8.5% reported significant symptoms of hopelessness (BHS ≥ 8). Depression was associated with greater physical symptom burden (adjusted R(2) = 48.4%), while hopelessness was associated with older age and lower self-esteem (adjusted R(2) = 45.4%). Both were associated with poorer spiritual well-being. CONCLUSIONS: Clinically significant depressive symptoms were common early in the course of AL and related to physical symptom burden. Hopelessness was less common and associated with older age and lower self-esteem. The results suggest that whereas depression in AL may be related to disease burden, the preservation of hope may be linked to individual resilience, life stage, and realistic prognosis.Copyright © 2015 John Wiley & Sons, Ltd.
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Depressão/psicologia , Esperança , Leucemia Mieloide Aguda/psicologia , Autoimagem , Adaptação Psicológica , Adulto , Idoso , Doença Crônica , Depressão/etiologia , Feminino , Humanos , Leucemia Mieloide Aguda/complicações , Acontecimentos que Mudam a Vida , Masculino , Pessoa de Meia-Idade , Prevalência , Escalas de Graduação PsiquiátricaRESUMO
BACKGROUND: Early palliative care is increasingly recommended but seldom practised. We sought to examine perceptions of palliative care among patients with advanced cancer and their caregivers. METHODS: After conducting a cluster randomized controlled trial of early palliative care versus standard care for patients with advanced cancer, we approached patients and their caregivers to participate in semistructured interviews seeking to assess, qualitatively, their attitudes and perceptions about palliative care. We used the grounded theory method for data collection and analysis. RESULTS: A total of 48 patients (26 intervention, 22 control) and 23 caregivers (14 intervention, 9 control) completed interviews. Participants' initial perceptions of palliative care in both trial arms were of death, hopelessness, dependency and end-of-life comfort care for inpatients. These perceptions provoked fear and avoidance, and often originated from interactions with health care professionals. During the trial, those in the intervention arm developed a broader concept of palliative care as "ongoing care" that improved their "quality of living" but still felt that the term itself carried a stigma. Participants in the intervention group emphasized the need for palliative care to be reframed and better explained by health care professionals. Participants in the control group generally considered it pointless to rename palliative care, but many in the intervention group stated emphatically that a different name was necessary in the early outpatient setting. INTERPRETATION: There is a strong stigma attached to palliative care, which may persist even after positive experiences with an early palliative care intervention. Education of the public, patients and health care providers is paramount if early integration of palliative care is to be successful.
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Cuidadores/psicologia , Neoplasias/terapia , Cuidados Paliativos/métodos , Pacientes/psicologia , Assistência Terminal/métodos , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Estigma Social , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Death anxiety is important but understudied in palliative care. New self-report measurements have been developed, but their interpretation and clinical utility may not be evident. AIM: To inform our understanding of death anxiety in patients with advanced cancer by exploring the relationship between this self-reported symptom and its clinical presentation. DESIGN: Participants were part of a psychotherapy trial in advanced cancer. First therapy session transcripts were analyzed using interpretive description in patients reporting low, moderate, and high death anxiety on the Death and Dying Distress Scale (DADDS). SETTING/PARTICIPANTS: A total of 16 participants (10 women and 6 men) with advanced or metastatic cancer were sampled from the Princess Margaret Cancer Centre, Toronto, Canada. Six participants reported low death anxiety scores (Death and Dying Distress Scale: 0-19), five moderate (Death and Dying Distress Scale: 20-50), and five high (Death and Dying Distress Scale: 51-75). RESULTS: The low death anxiety group exhibited psychological readiness for death, or contrastingly, non-reflectiveness about death. The moderate group recognized the imminence of mortality, which impacted treatment decisions and future plans. Prior experience with death was discussed as raising the salience of mortality. The high group felt dominated by powerful emotions and could not make sense of their situation. Their distress was exacerbated by substantial relational concerns. CONCLUSION: Self-reported death anxiety is affected by the awareness and ability to reflect on mortality. Death and Dying Distress Scale scores may facilitate exploration of this symptom as part of a clinical assessment and may serve to guide treatment approaches. Greater attention to death anxiety is consistent with and recommended by contemporary approaches to palliative care.
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Ansiedade/psicologia , Atitude Frente a Morte , Neoplasias/psicologia , Cuidados Paliativos/psicologia , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Ontário , Escalas de Graduação PsiquiátricaRESUMO
BACKGROUND: Patients with advanced cancer have reduced quality of life, which tends to worsen towards the end of life. We assessed the effect of early palliative care in patients with advanced cancer on several aspects of quality of life. METHODS: The study took place at the Princess Margaret Cancer Centre (Toronto, ON, Canada), between Dec 1, 2006, and Feb 28, 2011. 24 medical oncology clinics were cluster randomised (in a 1:1 ratio, using a computer-generated sequence, stratified by clinic size and tumour site [four lung, eight gastrointestinal, four genitourinary, six breast, two gynaecological]), to consultation and follow-up (at least monthly) by a palliative care team or to standard cancer care. Complete masking of interventions was not possible; however, patients provided written informed consent to participate in their own study group, without being informed of the existence of another group. Eligible patients had advanced cancer, European Cooperative Oncology Group performance status of 0-2, and a clinical prognosis of 6-24 months. Quality of life (Functional Assessment of Chronic Illness Therapy--Spiritual Well-Being [FACIT-Sp] scale and Quality of Life at the End of Life [QUAL-E] scale), symptom severity (Edmonton Symptom Assessment System [ESAS]), satisfaction with care (FAMCARE-P16), and problems with medical interactions (Cancer Rehabilitation Evaluation System Medical Interaction Subscale [CARES-MIS]) were measured at baseline and monthly for 4 months. The primary outcome was change score for FACIT-Sp at 3 months. Secondary endpoints included change score for FACIT-Sp at 4 months and change scores for other scales at 3 and 4 months. This trial is registered with ClinicalTrials.gov, number NCT01248624. FINDINGS: 461 patients completed baseline measures (228 intervention, 233 control); 393 completed at least one follow-up assessment. At 3-months, there was a non-significant difference in change score for FACIT-Sp between intervention and control groups (3·56 points [95% CI -0·27 to 7·40], p=0·07), a significant difference in QUAL-E (2·25 [0·01 to 4·49], p=0·05) and FAMCARE-P16 (3·79 [1·74 to 5·85], p=0·0003), and no difference in ESAS (-1·70 [-5·26 to 1·87], p=0·33) or CARES-MIS (-0·66 [-2·25 to 0·94], p=0·40). At 4 months, there were significant differences in change scores for all outcomes except CARES-MIS. All differences favoured the intervention group. INTERPRETATION: Although the difference in quality of life was non-significant at the primary endpoint, this trial shows promising findings that support early palliative care for patients with advanced cancer. FUNDING: Canadian Cancer Society, Ontario Ministry of Health and Long Term Care.
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Intervenção Médica Precoce/organização & administração , Neoplasias/terapia , Cuidados Paliativos/organização & administração , Idoso , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Ontário , Ambulatório Hospitalar/organização & administração , Cuidados Paliativos/psicologia , Satisfação do Paciente , Psicometria , Qualidade de Vida , Método Simples-Cego , Resultado do TratamentoRESUMO
BACKGROUND: The quality of dying and death refers to the evaluation of the final days of life and the moment of death with respect to how it is prepared for, faced and experienced by those with a terminal illness. It includes experience in multiple domains: physical, psychological, social, spiritual or existential, the nature of health care, life closure and death preparation, and the circumstances of death. AIM: To explore the quality of dying and death in cancer patients in Israel and its relationship to place of death and socio-demographic characteristics of the primary caregivers and the deceased. DESIGN: Retrospective assessment of the quality of dying and death, based on caregiver responses to the Quality of Dying and Death (QODD) questionnaire (overall score ranges from 0 to 100; higher scores reflect better dying and death experiences) 8 to 10 months after the death. PARTICIPANTS: Ninety-five caregivers of Jewish cancer patients, most of whom were female spouses or children of the deceased. RESULTS: Mean QODD score was 57.2 (standard deviation [SD]=15), which is in the low-moderate range. Place of death, gender and age of the caregiver, and age of the deceased, were associated with QODD score. CONCLUSIONS: This retrospective study in Israel demonstrated that the overall quality of dying and death was regarded as poor by almost half of the caregivers. These findings may reflect the relative lack of specialized palliative care and advance care planning in Israel at the time of this study, which took place between 2006 and 2009. Further research and enhancement of palliative care resources may be needed in Israel and several encouraging recent developments (e.g. staff training and legislation) suggest that such changes are now underway.
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Atitude Frente a Morte , Morte , Neoplasias/psicologia , Idoso , Cuidadores/psicologia , Feminino , Humanos , Israel , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Cuidados Paliativos/psicologia , Estudos Retrospectivos , Fatores Socioeconômicos , Inquéritos e Questionários , Assistência Terminal/psicologiaRESUMO
PURPOSE: Treatment of adult acute myeloid leukemia (AML) is intensive, with induction treatment initiated in an inpatient setting and subsequent consolidation therapy often conducted in an outpatient setting. The purpose of the present qualitative paper is to provide insight into the experience of patients in the transition from inpatient to ambulatory care. METHODS: Participants were 35 AML patients who were interviewed about their experience of the illness and treatment. Utilizing the grounded theory method, we describe the adjustment of participants to the transition to ambulatory care. RESULTS: As outpatients, participants described adjusting to the intensity of ambulatory treatment and to the need to assume greater responsibility for their care. They also expressed a growing desire to understand their long-term care plan, compared to their preference to focus on the present prior to discharge, and they were struggling to construct a new sense of identity. CONCLUSIONS: AML patients are now leaving acute care settings sicker and earlier. Considering their perceptions can inform interventions to facilitate adjustment during the transition to outpatient care.
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Assistência Ambulatorial/métodos , Continuidade da Assistência ao Paciente , Pacientes Internados , Leucemia Mieloide Aguda/terapia , Pacientes Ambulatoriais , Adulto , Idoso , Assistência Ambulatorial/organização & administração , Assistência Ambulatorial/normas , Continuidade da Assistência ao Paciente/organização & administração , Continuidade da Assistência ao Paciente/normas , Feminino , Humanos , Pacientes Internados/estatística & dados numéricos , Assistência de Longa Duração , Masculino , Pessoa de Meia-Idade , Alta do Paciente/normas , Qualidade da Assistência à SaúdeAssuntos
Cuidadores/psicologia , Pessoal de Saúde/psicologia , Neoplasias/mortalidade , Cuidados Paliativos/psicologia , Qualidade da Assistência à Saúde/normas , Direito a Morrer , Assistência Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Atitude Frente a Morte , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Fatores Socioeconômicos , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Advanced cancer brings substantial physical and psychosocial challenges that may contribute to emotional distress and diminish well-being. In this study, we present preliminary data concerning the effectiveness of a new brief individual psychotherapy, Managing Cancer And Living Meaningfully (CALM), designed to help individuals cope with this circumstance. AIM: To test the feasibility and preliminary effectiveness of CALM to reduce emotional distress and promote psychological well-being and growth. DESIGN: CALM is a brief, manualized, semi-structured individual psychotherapy for patients with advanced cancer. This study employed a phase 2 intervention-only design. The primary outcome was depressive symptoms and the secondary outcomes were death anxiety, attachment security, spiritual well-being and psychological growth. These were assessed at 3 months (t1) and 6 months (t2). Multilevel regression was used to model change over time. SETTING/PARTICIPANTS: A total of 50 patients with advanced or metastatic cancer were recruited from the Princess Margaret Cancer Centre, Toronto, Canada. RESULTS: A total of 39 patients (78%) were assessed at baseline, 24 (48%) at t1, and 16 (32%) at t2. Analyses revealed reductions over time in depressive symptoms: beta = -0.13, confidence interval (CI.95) = (-0.23, -0.022) and death anxiety: beta = -0.23, CI.95 (-0.40, -0.061); and an increase in spiritual well-being: beta = 0.14, CI.95 (0.026, 0.26). CONCLUSIONS: CALM may be a feasible intervention to benefit patients with advanced cancer. The results are encouraging, despite attrition and small effect sizes, and support further study.
Assuntos
Neoplasias/psicologia , Cuidados Paliativos , Psicoterapia Breve/normas , Atitude Frente a Morte , Transtorno Depressivo/etiologia , Estudos de Viabilidade , Feminino , Humanos , Relações Interpessoais , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/métodos , Projetos Piloto , Pesquisa Qualitativa , Análise de Regressão , Estresse Psicológico/prevenção & controleRESUMO
OBJECTIVES: Suicide rates are elevated in individuals with cancer, although suicidal intention is not typically assessed in cancer centers. We evaluated in a large comprehensive cancer center the utility of an electronic Distress Assessment and Response Tool (DART), in which suicidal intention is assessed with a single item. METHODS: Patients attending cancer clinics completed DART as part of routine care. DART includes measures of physical symptoms, depression, anxiety, social difficulties, and practical concerns. Medical variables were obtained from the Princess Margaret Cancer Registry, the data warehouse of cancer patient statistics. A Generalized Estimating Equation (GEE) model was used to assess factors associated with suicidal intention. RESULTS: Between September 2009 and March 2012, 4822/5461 patients (88.3%) who completed DART consented to the use of their data for research. Amongst the latter, 280 (5.9%) of the 4775 patients who answered the question reported suicidal ideation, which was related to physical and psychological distress, and social difficulties (ps < 0.0001). Amongst those with ideation who responded to the intention question, 20/186 (10.8%) reported suicidal intention. Of respondents with more severe suicidal ideation, 12/49 (24.5%) reported suicidal intention. Using a GEE model, suicidal intention in those with ideation was significantly associated with male sex, difficulty making treatment decisions, and with everyday living concerns. CONCLUSIONS: Suicidal ideation is reported on an electronic distress screening tool (DART) by almost 6% of cancer patients, of whom almost 11% report suicidal intention and 33% decline to indicate intention. DART demonstrated utility in identifying patients who may be at highest risk of completed suicide and who require urgent clinical assessment.
Assuntos
Computadores , Intenção , Programas de Rastreamento/métodos , Neoplasias/psicologia , Suicídio/psicologia , Ansiedade/complicações , Ansiedade/psicologia , Depressão/complicações , Depressão/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/complicações , Fatores de Risco , Ideação Suicida , Suicídio/estatística & dados numéricos , Inquéritos e Questionários , Prevenção do SuicídioRESUMO
BACKGROUND: The relational impact of advanced cancer on both patients and spouse caregivers has rarely been examined simultaneously. This study describes a framework for understanding distress in each partner as a consequence of psychosocial characteristics, burden of disease or of caregiving, and the distress of the other person. A model focusing on the protective value of social relatedness was tested to illustrate the interdependence of patients and spouses in their mutual adaptation to disease. METHODS: A total of 278 advanced cancer patients and their spouse caregivers completed measures of psychological distress (e.g., depression), physical burden from cancer (e.g., symptom count), caregiving burden (i.e., time and task demand), and social relatedness (i.e., social support and attachment security). Structural equation modeling was used to extract latent factors associated with these constructs and to examine their interrelationships. RESULTS: The model fit was adequate. Patient distress was related to disease burden (standardized path coefficient = 0.52) and patient social relatedness (-0.32). Caregiver distress was related to caregiving burden (0.21) and caregiver social relatedness (-0.51). Caregiving burden was related to patient disease burden (0.43) and caregiver social relatedness (-0.37). Reciprocal pathways between patient and caregiver distress indicated that caregiver distress was influenced by patient distress (0.30) but not vice versa (0.12). CONCLUSIONS: These findings support the view that patients and caregivers constitute an interdependent relational system and interventions in this setting should take into account both interactions between patients and caregivers and the nature of their social relatedness.
Assuntos
Ansiedade/psicologia , Cuidadores/psicologia , Depressão/psicologia , Casamento/psicologia , Neoplasias/psicologia , Apego ao Objeto , Estresse Psicológico/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Modelos Psicológicos , Neoplasias/enfermagem , Neoplasias/patologiaRESUMO
OBJECTIVE: Acute leukemia is a condition with an acute onset that is associated with considerable morbidity and mortality. However, the psychological impact of this life-threatening condition and its intensive treatment has not been systematically examined. In the present study, we investigate the prevalence and correlates of post-traumatic stress symptoms in this population. METHODS: Patients with acute myeloid, lymphocytic, and promyelocytic leukemia who were newly diagnosed, recently relapsed, or treatment failures were recruited at a comprehensive cancer center in Toronto, Canada. Participants completed the Stanford Acute Stress Reaction Questionnaire, Memorial Symptom Assessment Scale, CARES Medical Interaction Subscale, and other psychosocial measures. A multivariate regression analysis was used to assess independent predictors of post-traumatic stress symptoms. RESULTS: Of the 205 participants, 58% were male, mean age was 50.1 ± 15.4 years, 86% were recently diagnosed, and 94% were receiving active treatment. The mean Stanford Acute Stress Reaction Questionnaire score was 30.2 ± 22.5, with 27 of 200 (14%) patients meeting criteria for acute stress disorder and 36 (18%) for subsyndromal acute stress disorder. Post-traumatic stress symptoms were associated with more physical symptoms, physical symptom distress, attachment anxiety, and perceived difficulty communicating with health-care providers, and poorer spiritual well-being (all p < 0.05). CONCLUSIONS: The present study demonstrates that clinically significant symptoms of traumatic stress are common in acute leukemia and are linked to the degree of physical suffering, to satisfaction with relationships with health-care providers, and with individual psychological characteristics. Longitudinal study is needed to determine the natural history, but these findings suggest that intervention may be indicated to alleviate or prevent traumatic stress in this population.