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1.
Support Care Cancer ; 32(7): 475, 2024 Jul 02.
Artigo em Inglês | MEDLINE | ID: mdl-38954081

RESUMO

PURPOSE: Financial toxicity is used to describe the financial hardship experienced by cancer patients. Financial toxicity may cause negative consequences to patients, whereas little is known in Chinese context. This study aimed to explore the level of financial toxicity, coping strategies, and quality of life among Chinese patients with hematologic malignancies. PATIENTS AND METHODS: We conducted a prospective, observational study among 274 Chinese patients with hematologic malignancies from November 2021 to August 2022 in Sun Yat-sen University Cancer Center. Clinical data were extracted from electronic clinical records. Data on financial toxicity, coping strategies, and quality of life were collected using PRO measures. Chi-square or independent t test and multivariate logistic regression were performed to explore the associated factors of financial toxicity and quality of life, respectively. Effects of financial toxicity on coping strategies were examined using Chi-square. RESULTS: The mean age of the participants was 50.2 (± 14.6) years. Male participants accounted for 57.3%. About half of the participants reported high financial toxicity. An average median of ¥200,000 on total medical expenditures since the diagnosis was reported. The average median monthly out-of-pocket health expenditure relating to cancer treatment was ¥20,000 (range ¥632-¥172,500) after reimbursement. Reduce daily living expenses (64.9%), borrowing money (55.7%), and choosing cheaper regimens (19.6%) were the commonly used strategies to cope with financial burden. Financial toxicity was negatively associated with quality of life (ß = 0.071, P = 0.001). CONCLUSIONS: Financial toxicity was not uncommon in patients with hematological malignancies. Reducing daily living expenses, abandoning treatment sessions, and borrowing money were the strategies commonly adopted by participants to defray cancer costs. Additionally, participants with high level of financial toxicity tended to have worse quality of life. Therefore, actions from healthcare providers, policy-makers, and other stakeholders should be taken to help cancer patients mitigate their financial toxicity.


Assuntos
Adaptação Psicológica , Gastos em Saúde , Neoplasias Hematológicas , Qualidade de Vida , Humanos , Masculino , Neoplasias Hematológicas/psicologia , Neoplasias Hematológicas/terapia , Neoplasias Hematológicas/economia , Feminino , Estudos Transversais , Pessoa de Meia-Idade , Estudos Prospectivos , Adulto , China , Gastos em Saúde/estatística & dados numéricos , Idoso , Efeitos Psicossociais da Doença , Estresse Financeiro/psicologia , Capacidades de Enfrentamento
2.
Support Care Cancer ; 32(5): 302, 2024 Apr 22.
Artigo em Inglês | MEDLINE | ID: mdl-38647710

RESUMO

PURPOSE: This cross-sectional study explored the associations between intrapersonal and interpersonal emotional competence (EC) and the unmet supportive care needs (SCN), anxiety, and depression of informal caregivers at the beginning of gastrointestinal or haematological cancer care, i.e. during chemotherapy and within 6 months after diagnosis. METHODS: The participants completed a self-reported questionnaire, comprising the Short Profile of Emotional Competence (S-PEC), the SCN survey for partners and caregivers (SCNS-P&C), and the Hospital Anxiety and Depression Scale (HADS). Multivariate logistic regression models were performed to explore the influence of EC on unmet SCN and the presence of moderate/severe anxiety or depression. RESULTS: Most of the 203 caregivers were women (n = 141, 69.80%) and the partners of patients (n = 148, 73.27%) suffering from gastrointestinal (n = 112, 55.17%) and haematological (n = 91, 44.83%) cancer. Only intrapersonal EC showed a significant influence out of all the dimensions of unmet SCN related to healthcare services and information (odds ratio (OR) = 0.35 [95%CI 0.19; 0.65]), emotional and psychological needs (OR = 0.43 [95%CI 0.25; 0.74]), work and social security (OR = 0.57 [95%CI 0.37; 0.88]), and communication and family support (OR = 0.61 [95%CI 0.39; 0.95]). A one-unit increase in the intrapersonal EC score significantly reduced the probability of anxiety (OR = 0.42, [95%CI 0.26; 0.68]) and depression (OR = 0.34, [95%CI 0.21; 0.55]). CONCLUSION: Intrapersonal EC of caregivers is crucial to reduce the risk of unmet SCN, anxiety, and depression from the beginning of care. Identifying caregivers with lower intrapersonal EC may be necessary to increase vigilance from healthcare professionals and psychologists.


Assuntos
Ansiedade , Cuidadores , Depressão , Emoções , Apoio Social , Humanos , Cuidadores/psicologia , Feminino , Masculino , Pessoa de Meia-Idade , Estudos Transversais , Ansiedade/etiologia , Depressão/etiologia , Depressão/epidemiologia , Idoso , Inquéritos e Questionários , Adulto , Modelos Logísticos , Neoplasias Gastrointestinais/psicologia , Neoplasias Hematológicas/terapia , Neoplasias Hematológicas/psicologia , Neoplasias/psicologia , Necessidades e Demandas de Serviços de Saúde , Análise Multivariada
3.
Support Care Cancer ; 29(7): 4065-4073, 2021 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-33404815

RESUMO

PURPOSE: The primary aim was to assess supportive care needs, compliance with home exercise program, quality of life level (QOL), and anxiety level during the COVID-19 pandemic in individuals treated with hematopoietic stem cell transplantation (HSCT). The secondary aim was to investigate demographic and medical factors associated with the recorded outcomes. METHODS: The present study included individuals treated with HSCT and previously referred to physical therapy. The data were collected by interviews with the participants on the phone. Supportive care needs were assessed using the Supportive Care Needs Survey-Short Form 29TR. Compliance with the exercise program was recorded as the number of patients regularly performed strengthening and stretching exercises and the ratio of the walking duration to the recommended duration. The European Cancer Research and Treatment Organization Quality of Life Questionnaire-Cancer30 was used to assess the QOL. The State-Trait Anxiety Inventory-I and the Visual Analogue Scale were used to assess anxiety level. RESULTS: The present study included 101 individuals treated with HSCT. The psychological and physical supportive care needs were predominant in participants. Compliance with exercise program was low. General anxiety level was low, yet anxiety about COVID-19 was moderate level in participants. Supportive care needs were related to female gender, performance level, time since HSCT, and QOL level (p Ë‚ 0.05). Anxiety level was correlated with supportive care needs, COVID-19-related anxiety, and QOL (p Ë‚ 0.05). Compliance with exercise program was associated with age, performance level, and QOL (p Ë‚ 0.05). CONCLUSION: Our results offer that supportive telehealth interventions should be considered during the COVID-19 pandemic for individuals treated with HSCT to decrease unmet supportive care needs and isolation-related physical inactivity.


Assuntos
COVID-19/epidemiologia , Necessidades e Demandas de Serviços de Saúde , Neoplasias Hematológicas/psicologia , Neoplasias Hematológicas/terapia , Monitorização Fisiológica/métodos , Cuidados Paliativos , Adulto , Idoso , Ansiedade/diagnóstico , Ansiedade/epidemiologia , Ansiedade/etiologia , Terapia Combinada , Terapia por Exercício/métodos , Terapia por Exercício/psicologia , Feminino , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Neoplasias Hematológicas/epidemiologia , Transplante de Células-Tronco Hematopoéticas/psicologia , Humanos , Masculino , Programas de Rastreamento/métodos , Pessoa de Meia-Idade , Cuidados Paliativos/psicologia , Pandemias , Cooperação do Paciente/estatística & dados numéricos , Qualidade de Vida/psicologia , Inquéritos e Questionários , Telemedicina/métodos , Turquia/epidemiologia , Adulto Jovem
4.
J Cancer Res Clin Oncol ; 147(4): 1239-1246, 2021 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-33052515

RESUMO

PURPOSE: To analyze demand for information and advice as well as medical, psychological, and social needs of adolescents and young adults (AYAs) and older patients (non-AYA) after hematopoietic stem cell transplantation (HSCT). METHODS: A questionnaire was sent to 100 HSCT recipients comprising n = 50 AYAs (aged 19-39 years) and n = 50 non-AYAs (> 39 years). The questionnaire covered the categories: (a) patient characteristics; (b) need for advice, on medical, psychological, and social care topics; (c) medical, psychological, and social needs, and (d) preferred forms and channels of information. RESULTS: The return rate was 65%. 62.5% of patients indicated medical needs; 41.1% psychological needs, and 64.9% had needs concerning social issues. Among medical aspects, aftercare was important to both groups. Nutrition was of highest interest for AYA, while non-AYAs identified fatigue and vaccination as their most pressing concerns. Body shape/sexuality and relaxation techniques were the most common psychological issues for AYA, while coping strategies were important for both cohorts. Family, relationship and friends were of less interest in both groups. Rehabilitation and premature retirement were of highest interest for both cohorts. The preferred mode of communicating advice was one-to-one conversation in a quiet environment as opposed to informational sessions. CONCLUSION: Despite well-established aftercare programs following HSCT, many patients describe unmet needs regarding medical, psychological, and social policy issues. AYA and non-AYA differ in informational needs after HSCT, and, therefore, age-appropriate informational materials are necessary. Particularly AYA may profit from information covering body-shape/sexuality and nutrition, while both cohorts require information covering coping strategies and aftercare.


Assuntos
Necessidades e Demandas de Serviços de Saúde , Neoplasias Hematológicas/psicologia , Transplante de Células-Tronco Hematopoéticas/métodos , Avaliação das Necessidades , Qualidade de Vida , Apoio Social , Adolescente , Adulto , Estudos de Coortes , Feminino , Seguimentos , Neoplasias Hematológicas/reabilitação , Neoplasias Hematológicas/terapia , Humanos , Masculino , Pessoa de Meia-Idade , Educação de Pacientes como Assunto , Prognóstico , Inquéritos e Questionários , Adulto Jovem
5.
Qual Life Res ; 29(12): 3375-3385, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-32815114

RESUMO

PURPOSE: In this study, we examined distress levels and quality of life (QoL) of patients with hematologic malignancies under treatment in an acute setting. We used external- and self-assessment instruments for distress. Additionally, we investigated the relation between distress and QoL as well as whether highly distressed patients differed from less distressed patients concerning their QoL. METHODS: A cross-sectional study with patients of the Medical Clinic II of the University Hospital Frankfurt was conducted. One hundred and nine patients were assessed with an expert rating scale and completed self-report questionnaires. Data were exploratively analyzed and group comparisons between patients who scored above the cut-off of the respective screening instruments and those who did not were conducted. RESULTS: Patients with hematologic malignancies experience high levels of distress and low QoL. Especially, role and social functioning are affected. Patients suffer most from fatigue, appetite loss, and insomnia. Using established cut-offs, all screening instruments were able to differentiate between patients regarding distress and QoL. Patients scoring above the cut-off were significantly more distressed and had a lower QoL. There was a medium-to-strong correlation between distress and QoL indicators. CONCLUSION: Cancer-specific screening instruments seem to be able to identify treatment needs more specifically. They also allowed a better differentiation concerning QoL. The close link between distress and QoL needs to be recognized to enable a holistic approach to treatment and thereby optimize the quality of treatment.


Assuntos
Neoplasias Hematológicas/psicologia , Programas de Rastreamento/métodos , Qualidade de Vida/psicologia , Estresse Psicológico/diagnóstico , Estudos Transversais , Feminino , Hospitais , Humanos , Masculino , Pessoa de Meia-Idade , Estresse Psicológico/psicologia , Inquéritos e Questionários
6.
Value Health ; 23(7): 953-968, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-32762998

RESUMO

OBJECTIVES: We performed a systematic review of health state utility values (HSUVs) obtained using the EQ-5D questionnaire for patients with hematologic malignancies. METHODS: The following databases were searched up to September 2018: MEDLINE, EMBASE, The Cochrane Library, and the EQ-5D publications database on the EuroQol website. Additional references were extracted from reviewed articles. Only studies presenting EQ-Index results were incorporated. In view of the heterogeneity across the included publications, we limited ourselves to a narrative synthesis of original HSUVs found. RESULTS: Fifty-nine studies (described in 63 articles) met the inclusion criteria. Data from 21 635 respondents provided 796 HSUV estimates for hematologic malignancy patients. EQ-Index scores ranged from -0.025 to 0.980. The most represented area was multiple myeloma (4 studies, 11 112 patients, and 249 HSUVs). In clinical areas such as chronic myeloid leukemia, acute myeloid leukemia, chronic lymphocytic leukemia, non-Hodgkin lymphoma, and mantle cell lymphoma, we described over 50 health utilities in each. In contrast, we identified only 13 HSUVs (based on 4 studies and the data of 166 patients) for Hodgkin lymphoma. Areas without EQ-5D-based health utilities comprised: polycythemia vera, primary myelofibrosis, essential thrombocythemia, mastocytosis, myeloid sarcoma, chronic myelomonocytic, eosinophilic leukemia, and neutrophilic leukemia. CONCLUSIONS: There is a wide range of HSUVs available for hematologic cancer patients with different indications. The review provides a catalog of utility values for use in cost-effectiveness models for hematologic malignancies.


Assuntos
Nível de Saúde , Neoplasias Hematológicas/psicologia , Qualidade de Vida , Análise Custo-Benefício , Neoplasias Hematológicas/economia , Neoplasias Hematológicas/patologia , Humanos , Modelos Econômicos , Inquéritos e Questionários
7.
J Cancer Educ ; 35(4): 651-660, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-30877651

RESUMO

Hematopoietic cell transplantation (HCT) is a complex and potentially life-threatening treatment option for patients with hematologic malignant and non-malignant diseases. Advances have made HCT a potentially curative treatment option for patients 65 years of age and older (older patients), and patient education resources should be adapted to meet their needs. To better understand the information needs of older patients and their caregivers for HCT treatment decision-making, the National Marrow Donor Program® (NMDP)/Be The Match® conducted a qualitative comprehensive needs assessment. Focus groups, offered in person or by phone, were conducted with older HCT patients and primary caregivers of older HCT patients at three transplant centers in the USA that were selected based on the number of older adults treated and geographic diversity. The one-hour, semi-structured discussions were recorded and transcribed verbatim. The analysis was performed with the NVivo 10 software for identification of conceptual themes. Five telephone and six in person focus groups of patients (n = 35) and caregivers (n = 10) were conducted. Themes that emerged included the following: (1) the need for tailored resources with age-specific recovery expectations; (2) the need for the right amount of information at the right times; and (3) the benefit of peer support. Effective patient education supports learning and treatment decision-making. As HCT increasingly becomes a treatment option for older patients, tailored educational resources are needed. These focus group results can inform and guide the development of new educational resources for older adults with hematologic diseases considering and planning for HCT.


Assuntos
Cuidadores/psicologia , Tomada de Decisões , Necessidades e Demandas de Serviços de Saúde/normas , Neoplasias Hematológicas/terapia , Transplante de Células-Tronco Hematopoéticas/métodos , Disseminação de Informação , Educação de Pacientes como Assunto , Idoso , Idoso de 80 Anos ou mais , Feminino , Grupos Focais , Neoplasias Hematológicas/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades
8.
J Psychosoc Oncol ; 38(3): 272-292, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31833452

RESUMO

Purpose: Individuals diagnosed with a high-grade hematological malignancy are at high risk for psychosocial distress. This study aimed to examine the effectiveness of a web-based information tool and nurse delivered telephone support in reducing: (i) unmet information needs; (ii) depression; and (iii) anxiety, among hematological cancer patients and their support persons (SPs).Methods: Patients with a new diagnosis of acute myeloid leukemia, acute lymphoblastic leukemia, Burkitt lymphoma, or lymphoblastic lymphoma and their SPs were enrolled in a prospective multi-site randomized trial. Participants received either access to an online information tool and telephone support from a hematology nurse, or usual care. Outcome data were collected 2, 4, 8, and 12 weeks post-recruitment. The primary endpoint was unmet information needs.Results: Data from 60 patients and 15 SPs were included in the analysis. There were no statistically significant differences in unmet information needs, depression or anxiety between intervention and control groups for patients. Patients in both groups demonstrated a decrease in information needs over the intervention period. Post hoc analyses revealed that patients who did not achieve remission with the first cycle of treatment experienced increased anxiety from 4 weeks until the end of the study (p = 0.008).Conclusions: A web-based information tool and nurse delivered telephone support did not reduce unmet information needs, depression or anxiety among hematological cancer patients, however this finding is inconclusive given the low power of the study.Implications for Psychosocial Providers or Policy: Patients who do not achieve remission are at high risk of anxiety, and may benefit from targeted psychological intervention.


Assuntos
Ansiedade/prevenção & controle , Depressão/prevenção & controle , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Neoplasias Hematológicas/psicologia , Neoplasias Hematológicas/terapia , Adulto , Idoso , Ansiedade/epidemiologia , Informação de Saúde ao Consumidor , Depressão/epidemiologia , Feminino , Humanos , Internet , Masculino , Pessoa de Meia-Idade , Relações Enfermeiro-Paciente , Estudos Prospectivos , Apoio Social , Telefone , Resultado do Tratamento
9.
J Pain Symptom Manage ; 59(1): 139-146.e3, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31654740

RESUMO

CONTEXT: Cancer therapy-induced cognitive impairment adversely affects the quality of life of patients with cancer but cannot be detected by neuropsychological tests. OBJECTIVES: This study aimed to validate a Japanese version of the Functional Assessment of Cancer Therapy-Cognitive Function (FACT-Cog) version 3, which is a self-report measure of the cognitive concerns of patients with cancer. METHODS: The FACT-Cog was translated into Japanese and pilot tested with five patients with breast cancer and five patients with hematologic malignancy. Study participants were recruited in Hiroshima University Hospital and Kagawa Breast Clinic in Hiroshima, Japan. Patients with breast cancer (N = 236) responded to the resultant assessment and Functional Assessment of Cancer Therapy-General version 4. The internal consistency and concurrent and construct validity of the FACT-Cog were examined. RESULTS: The Cronbach's alphas of the four FACT-Cog subscales, namely, CogPCI, CogOth, CogPCA, and CogQOL, were 0.95, 0.73, 0.93, and 0.88, respectively. The item-to-domain correlations ranged from 0.211 to 0.920. Most of the FACT-Cog subscales were significantly correlated with other subscale and total scores (r = 0.133-0.425). Structural equation modeling was barely acceptable (χ2 = 1361.8, df = 489, P < 0.001; goodness of fit index = 0.731, adjusted goodness of fit index = 0.691, comparative fit index = 0.848, root-mean-square error of approximation = 0.087). CONCLUSION: The Japanese version of the FACT-Cog is a valid and reliable self-report measure of the cognitive function of patients with breast cancer. Its utility to clinicians and researchers in measuring the cognitive concerns of patients with cancer in Japan will serve as a further test of its validity.


Assuntos
Antineoplásicos/efeitos adversos , Neoplasias da Mama/tratamento farmacológico , Cognição/fisiologia , Disfunção Cognitiva/induzido quimicamente , Disfunção Cognitiva/psicologia , Neoplasias Hematológicas/tratamento farmacológico , Adulto , Antineoplásicos/uso terapêutico , Neoplasias da Mama/psicologia , Feminino , Neoplasias Hematológicas/psicologia , Humanos , Japão , Pessoa de Meia-Idade , Testes Neuropsicológicos , Psicometria , Reprodutibilidade dos Testes , Traduções
10.
J Comp Eff Res ; 8(7): 523-533, 2019 05.
Artigo em Inglês | MEDLINE | ID: mdl-31037971

RESUMO

Aim: To determine measurement equivalence of paper and electronic application of the hematological malignancy-patient-reported outcome (HM-PRO), a specific measure for the evaluation of patient-reported outcomes in HMs. Patients & methods: Following International Society of Pharmacoeconomics and Outcomes Research ePRO Good Research Practice Task Force guidelines, a total of 193 adult patients with different HMs were recruited into a multicenter prospective study. The paper and the electronic version of the instrument were completed in the outpatient clinics in a randomized crossover design with a 30 min time interval to minimize the learning effect. Those who completed the paper version first, completed the electronic version after 30 min and vice versa. Instrument version and order effects were tested on total score of the two parts of the HM-PRO (Part A: quality of life and Part B: signs & symptoms) in a two-way ANOVA with patients as random effects. Intraclass correlation coefficients (95% CI) and Spearman's rank correlation coefficients were used to evaluate test-retest reliability and reproducibility. The effects of instrument version and order were tested on total score of the two parts of HM-PRO. Results: The questionnaire version and administration order effects were not significant at the 5% level. There were no interactions found between these two factors for HM-PRO (Part A [quality of life]; p = 0.95); and (part B [signs and symptoms]; p = 0.72]. Spearman's rank correlation coefficients were greater than 0.9, and intraclass correlation coefficients ranged from 0.94 to 0.98; furthermore, the scores were not statistically different between the two versions, showing acceptable reliability indexes. Noteworthy, the difference between the completion time for both paper (mean = 6:38 min) and electronic version (mean = 7:29 min) was not statistically significant (n = 100; p = 0.11). Patients did not report any difficulty in completing the electronic version during cognitive interviews and were able to understand and respond spontaneously. Conclusion: Measurement equivalence has been demonstrated for the paper and electronic application of the HM-PRO.


Assuntos
Neoplasias Hematológicas/psicologia , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Inquéritos e Questionários/normas , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Análise de Variância , Estudos Cross-Over , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Reprodutibilidade dos Testes , Adulto Jovem
11.
J Clin Psychol Med Settings ; 26(4): 430-439, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-30689106

RESUMO

This study tests a new comprehensive model accounting for the role of demographic, personal, and social factors in quality of life (QOL) among a sample of hematological cancer patients. We hypothesized that positive and negative affect would mediate the associations between these factors and QOL. Seventy-two patients were recruited at an outpatient hematological clinic in a midsized medical center in northern Israel. They completed measures of QOL, social support, positive and negative affect, and emotional intelligence (EI). Diagnostic and demographic information was retrieved from their files. Path analysis supported a model in which positive and negative affect mediated the association between income level, social support, EI, and QOL. This study presents a model accounting for QOL among hematological patients that for the first time pertains to demographic, personal, and interpersonal factors. This model may guide future research as well as future interventions to empower and support this fragile target population.


Assuntos
Adaptação Psicológica , Atitude Frente a Saúde , Neoplasias Hematológicas/psicologia , Qualidade de Vida/psicologia , Apoio Social , Afeto , Fatores Etários , Inteligência Emocional , Feminino , Necessidades e Demandas de Serviços de Saúde , Humanos , Israel , Masculino , Pessoa de Meia-Idade , Índice de Gravidade de Doença , Inquéritos e Questionários
12.
Bone Marrow Transplant ; 54(7): 1013-1021, 2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-30353064

RESUMO

Recent findings suggest that patient pre-transplant psychosocial risk factors predict survival after hematopoietic stem cell transplant (HSCT) and importance of comprehensive psychosocial assessment during pre-transplant period is increasingly acknowledged. Psychosocial screening process, however, has not been standardized across transplant centers and its predictive value has not yet been confirmed. An observational cohort study was conducted to explore the relationships between psychosocial variables, assessed with the Psychosocial Assessment of Candidates for Transplantation (PACT) scale, and post-transplant overall survival (OS) of patients with hematologic malignancies who received allogeneic HSCT as treatment. Overall, 119 patient medical records were reviewed to determine the PACT score. After controlling for clinical and demographic covariates, lower PACT scores in the domain of compliance with medications and medical advice were significantly associated with poorer OS (HR = 1.75, P = 0.03). Lower PACT ratings in the subscales of personality and psychopathology (HR = 1.35, P = 0.08), lifestyle factors (HR = 1.43, P = 0.08), and relevant disease knowledge and receptiveness to education (HR = 1.32, P = 0.08) tended to be associated with shorter OS. These findings suggested the association between pre-transplant psychosocial factors using PACT and post-transplant OS in patients receiving allogeneic HSCT.


Assuntos
Neoplasias Hematológicas , Transplante de Células-Tronco Hematopoéticas/psicologia , Seleção de Pacientes , Adulto , Idoso , Intervalo Livre de Doença , Feminino , Seguimentos , Neoplasias Hematológicas/mortalidade , Neoplasias Hematológicas/psicologia , Neoplasias Hematológicas/terapia , Humanos , Masculino , Pessoa de Meia-Idade , Testes Psicológicos , Estudos Retrospectivos , Taxa de Sobrevida
13.
J Adv Nurs ; 75(1): 161-174, 2019 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-30375000

RESUMO

AIM: To provide expert consensus on the clinical indicators that signal a person with a haematological malignancy is at high risk of deteriorating and dying. BACKGROUND: Identification of people who are at risk of deteriorating and dying is essential to facilitate patient autonomy, appropriate treatment decisions, and effective end-of-life care. DESIGN: A three-step modified Delphi approach. METHODS: The study was conducted over 6 months (September 2015-March 2016) to gather opinion from an international panel of experts (N = 27) on the clinical indicators that signal a person with a haematological malignancy is at high risk of deteriorating and dying. The first round was informed by a systematic review of prognostic factors present in the final months of life for people with a haematological malignancy. Consensus was achieved if 70% of responses fell within two points on a seven-point Likert-type scale. FINDINGS: Consensus was achieved on the following 11 clinical indicators: (a) advancing age; (b) declining performances status; (c) presence of co-morbidities; (d) disease status; (e) persistent infections (bacterial and viral); (f) fungal infections; (g) severe graft versus host disease; (h) requiring high care; (i) signs of frailty; (j) treatment limitations; and (k) anorexia and/or weight loss. Consensus was also achieved on associated themes and statements for each indicator. CONCLUSION: The findings of this study indicate that subjective clinician-assessed indicators that are contextually relevant to the nature of haematological malignancies are markers of risk. This study has provided valuable preliminary findings on the topic and will inform future research.


Assuntos
Indicadores Básicos de Saúde , Neoplasias Hematológicas/mortalidade , Neoplasias Hematológicas/psicologia , Cuidados Paliativos/métodos , Medição de Risco/métodos , Assistência Terminal/métodos , Assistência Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Tomada de Decisões , Técnica Delphi , Feminino , Neoplasias Hematológicas/enfermagem , Humanos , Masculino , Pessoa de Meia-Idade
14.
Cancer ; 124(13): 2824-2831, 2018 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-29660822

RESUMO

BACKGROUND: The current study was performed to characterize the employment status of survivors of hematological cancer who have an informal caregiver from the time of diagnosis through the first 6 months of treatment. METHODS: Using a mixed methods approach, semistructured interviews with survivors of hematological cancer were conducted within 6 months of the initiation of cancer treatment. Interviews assessed cancer treatment status, barriers and facilitators to employment, financial and insurance status, and relationship with the primary caregiver. These results are part of a longitudinal study of cancer survivors and informal caregivers. RESULTS: A total of 171 patients were enrolled. Within 6 months of beginning cancer treatments, approximately 35% were no longer employed. Reasons to remain employed included financial need, employee benefits, and a sense of purpose and normalcy. Employer accommodations and supportive colleagues facilitated continued employment. Logistic regression analysis demonstrated that having a higher household income, a desire to work, nonphysical job tasks, and congruent survivor-caregiver communication were associated with greater odds of remaining employed. CONCLUSIONS: Within 6 months of initiating cancer treatment, the majority of survivors of hematological cancer had maintained employment. Because of the limitations imposed by the physical stress of cancer treatments, as well as the need to maintain employment to continue receiving employee benefits to cover such treatments, survivors of hematological cancer likely would benefit from employment accommodations that are sensitive to their unique needs. Cancer 2018;124:2824-2831. © 2018 American Cancer Society.


Assuntos
Sobreviventes de Câncer/psicologia , Cuidadores/estatística & dados numéricos , Emprego/estatística & dados numéricos , Neoplasias Hematológicas/terapia , Adaptação Psicológica , Adulto , Idoso , Sobreviventes de Câncer/estatística & dados numéricos , Emprego/psicologia , Feminino , Neoplasias Hematológicas/mortalidade , Neoplasias Hematológicas/psicologia , Humanos , Renda/estatística & dados numéricos , Cobertura do Seguro/estatística & dados numéricos , Seguro Saúde/estatística & dados numéricos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Ajustamento Social , Estados Unidos
15.
Oncol Nurs Forum ; 45(2): 148-158, 2018 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-29466341

RESUMO

PURPOSE: To explore the transition to self-care among a sample of emerging adult cancer survivors after hematopoietic cell transplantation (HCT). 
. PARTICIPANTS & SETTING: 18 HCT survivors who were aged 18-29 years at the time of HCT for a primary hematologic malignancy and were 8-60 months post-HCT participated in the study. The study took place in the hematology outpatient setting at City of Hope National Medical Center.
. METHODOLOGIC APPROACH: The authors conducted in-depth semistructured interviews and analyzed interview transcripts using grounded theory methodology.
. FINDINGS: Health-related setbacks following HCT disrupted not only participants' journey toward self-care, but also their overarching developmental trajectory toward adulthood. Physically, participants struggled with lack of personal space around caregivers, but felt unready to live on their own. Socially, they relied on multiple caregivers to avoid relying too much on any one person. Financially, participants worried about prolonged dependence and increased needs in the future.
. IMPLICATIONS FOR NURSING: Nurses can support the transition to self-care among emerging adults after HCT by recognizing the broader developmental impact of their cancer experience.


Assuntos
Adaptação Psicológica , Sobreviventes de Câncer/psicologia , Neoplasias Hematológicas/economia , Neoplasias Hematológicas/psicologia , Neoplasias Hematológicas/terapia , Transplante de Células-Tronco Hematopoéticas/economia , Transplante de Células-Tronco Hematopoéticas/psicologia , Adolescente , Adulto , Fatores Etários , Sobreviventes de Câncer/estatística & dados numéricos , Feminino , Humanos , Masculino , Adulto Jovem
16.
Leuk Lymphoma ; 59(3): 695-701, 2018 03.
Artigo em Inglês | MEDLINE | ID: mdl-28718335

RESUMO

This study was conducted to determine the incidence of inter-observer variability in Eastern Cooperative Oncology Group (ECOG) performance status (PS) rating between patients with leukemia and lymphoma and their physicians. ECOG PS was assessed at diagnosis by patients and their physicians and stratified by disease subtype, gender, age, disease stage and education. Association between patient- and physician-rated PS and overall survival (OS) was stratified by subtype and prognostic risk score. Overall, 65% of patients and physicians rated PS the same. Age, disease stage and disease subtype were significant predictors of PS disagreement. PS was a significant predictor of OS irrespective of assessment by patients or physicians across all subtypes except those with Hodgkin lymphoma. These findings suggest the need for physicians to better communicate with patients when determining PS, as PS is a strong predictor of survival and is critical in treatment decisions, including determining fitness for cancer treatment.


Assuntos
Tomada de Decisões , Neoplasias Hematológicas/fisiopatologia , Neoplasias Hematológicas/psicologia , Relações Médico-Paciente , Médicos/psicologia , Índice de Gravidade de Doença , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Definição da Elegibilidade , Feminino , Seguimentos , Neoplasias Hematológicas/terapia , Humanos , Masculino , Pessoa de Meia-Idade , Prognóstico , Taxa de Sobrevida , Adulto Jovem
17.
Support Care Cancer ; 25(11): 3447-3456, 2017 11.
Artigo em Inglês | MEDLINE | ID: mdl-28667564

RESUMO

OBJECTIVES: This paper aims to examine the cross-sectional and longitudinal associations between patient-reported unmet needs and anxiety and depression for survivors of diffuse large B cell lymphoma (DLBCL) and multiple myeloma (MM). METHODS: In a longitudinal study design, self-reported data were collected through telephone interviews at two time points approximately 7 (T1) and 15 (T2) months post-diagnosis. The sample was recruited through the population-based Victorian Cancer Registry. At T1 and T2, the study outcomes, anxiety and depression, were assessed using the Hospital Anxiety and Depression Scale (HADS) and unmet needs were measured using the Supportive Care Needs Survey (SCNS-SF34). Questions related to social/family problems, relationship problems and financial problems were also asked. A three-step multivariable hierarchical logistic regression analysis examined the relative role of T1 anxiety and depression, T1 and T2 unmet needs and other psychosocial factors with T2 anxiety and depression. RESULTS: Both cross-sectional and longitudinal associations were observed between unmet needs and psychological distress. T2 anxiety was associated with T1 anxiety (OR 4.75, 95% CI 1.86-11.09), T2 psychological needs (OR 1.68, 95% CI 1.34-2.11) and with T1 social problems (OR 2.33, 95% CI 1.03-5.05) in multivariate analysis. T2 depression was associated with both T1 (OR 1.28, 95% CI 1.06-1.57) and T2 psychological needs (OR 1.35, 95% CI 1.06-1.70), T2 physical needs (OR 1.89, 95% CI 1.27-2.81) and T1 depression (OR 4.52, 95% CI 1.88-10.86). CONCLUSIONS: Unmet needs that manifest following diagnosis and treatment may persist into early survivorship and contribute to psychological distress. Addressing these needs during treatment may diminish the risk of current and future anxiety and depression.


Assuntos
Ansiedade/psicologia , Sobreviventes de Câncer/psicologia , Depressão/psicologia , Necessidades e Demandas de Serviços de Saúde/normas , Neoplasias Hematológicas/psicologia , Estudos Transversais , Feminino , Neoplasias Hematológicas/patologia , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades
18.
Z Gerontol Geriatr ; 50(3): 247-258, 2017 Apr.
Artigo em Alemão | MEDLINE | ID: mdl-28364257

RESUMO

Hematological malignancies are typical diseases of the elderly. The aging of the population in the Western World results in a significant increase in the number of elderly patients with hematological malignant diseases. This has important consequences for medicine. One consequence of this development is that the need for tools for the evaluation of both functional and global status of the elderly increases. The use of these tools enables the hematologist to better stratify the patients, to individualize therapy better, to possibly modify therapy in order to improve implementation of supportive measures and interventions, to minimize toxicity and side effects and ultimately to tailor the treatment to the individual patient. Several tools are available for geriatric assessment (GA) and there is strong evidence that an effective GA can detect previously unknown problems. The targeted intervention improves the prognosis and compliance of therapy in elderly patients with hematological malignant diseases.


Assuntos
Detecção Precoce de Câncer/métodos , Detecção Precoce de Câncer/psicologia , Avaliação Geriátrica/métodos , Neoplasias Hematológicas/diagnóstico , Neoplasias Hematológicas/psicologia , Populações Vulneráveis/psicologia , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Relações Médico-Paciente
19.
Psychooncology ; 26(1): 118-124, 2017 01.
Artigo em Inglês | MEDLINE | ID: mdl-26940829

RESUMO

OBJECTIVE: Although cancer patients frequently experience self-perceived burden to others, this perception has not been enough studied. The aim of this study was to investigate the prevalence of self-perceived burden to the primary caregiver (SPB-PC) and associated factors in an older patient population with hematologic malignancies at the time of chemotherapy initiation. METHODS: In total, 166 consecutive patients with hematologic malignancies aged ≥65 years were recruited at the time of chemotherapy initiation. Patients' SPB-PC was assessed using a 100-mm visual analogue scale (VAS). Characteristics potentially associated with SPB-PC, including sociodemographic and medical characteristics, physical functioning status (Karnofsky performance score, activities of daily living (ADL)/instrumental ADL), symptoms (fatigue, pain, nausea, quality of life), psychological distress (Hospital Anxiety and Depression Scale (HADS)), perceived cognitive function (Functional Assessment of Cancer Therapy Cognitive (FACT-Cog) Scale), and patients'/primary caregivers' personal relationship characteristics (family tie, support), were assessed. RESULTS: Thirty-five percent of patients reported moderate to severe SPB-PC (VAS ≥ 50 mm). Patients' SPB-PC was associated with lower Karnofsky performance (ß = -0.135, p = 0.058) and ADL (ß = -0.148, p = 0.037) scores, and higher HADS (ß = 0.283, p < 0.001) and FACT-Cog perceived cognitive impairments subscale (ß = 0.211, p = 0.004) scores. The proportion of explained variance was 23.5%. CONCLUSIONS: Health care professionals should be aware that about one third of older cancer patients experience moderate to severe SPB-PC at the time of chemotherapy initiation. They should adapt their support of patients who report such a feeling. Copyright © 2016 John Wiley & Sons, Ltd.


Assuntos
Cuidadores/psicologia , Efeitos Psicossociais da Doença , Neoplasias Hematológicas/psicologia , Doente Terminal/psicologia , Atividades Cotidianas , Idoso , Idoso de 80 Anos ou mais , Feminino , Neoplasias Hematológicas/terapia , Humanos , Masculino , Prevalência , Qualidade de Vida/psicologia , Autoimagem , Índice de Gravidade de Doença
20.
Br J Cancer ; 115(7): 858-61, 2016 09 27.
Artigo em Inglês | MEDLINE | ID: mdl-27552440

RESUMO

BACKGROUND: Few studies have investigated the relationship between physician and patient-assessed performance status (PS) in blood cancers. METHODS: Retrospective analysis among 1418 patients with haematologic malignancies seen at Dana-Farber Cancer Institute between 2007 and 2014. We analysed physician-patient agreement of Eastern Cooperative Oncology Group PS using weighted κ-statistics and survival analysis. RESULTS: Mean age was 58.6 years and average follow-up was 38 months. Agreement in PS was fair/moderate (weighted κ=0.41, 95% CI 0.37-0.44). Physicians assigned a better functional status (lower score) than patients (mean 0.60 vs 0.81), particularly when patients were young and the disease was aggressive. Both scores independently predicted survival, but physician scores were more accurate. Disagreements in score were associated with poorer survival when physicians rated PS better than patients, and were modified by age, sex and severity of disease. CONCLUSIONS: Physician-patient disagreements in PS score are common and have prognostic significance.


Assuntos
Autoavaliação Diagnóstica , Neoplasias Hematológicas/psicologia , Pacientes/psicologia , Médicos/psicologia , Índice de Gravidade de Doença , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Neoplasias Hematológicas/mortalidade , Neoplasias Hematológicas/terapia , Humanos , Estimativa de Kaplan-Meier , Expectativa de Vida , Masculino , Pessoa de Meia-Idade , Prognóstico , Modelos de Riscos Proporcionais , Estudos Retrospectivos , Avaliação de Sintomas , Adulto Jovem
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