scholarly journals Patient ambassador support in newly diagnosed patients with acute leukemia during treatment: a feasibility study

Author(s):  
Kristina Holmegaard Nørskov ◽  
Dorthe Overgaard ◽  
Jannie Boesen ◽  
Anne Struer ◽  
Sarah Elke Weber Due El-Azem ◽  
...  

Abstract Purpose This study investigated the feasibility of patient ambassador support in newly diagnosed patients with acute leukemia during treatment. Methods A multicenter single-arm feasibility study that included patients newly diagnosed with acute leukemia (n = 36) and patient ambassadors previously treated for acute leukemia (n = 25). Prior to the intervention, all patient ambassadors attended a 6-h group training program. In the intervention, patient ambassadors provided 12 weeks of support for patients within 2 weeks of being diagnosed. Outcome measures included feasibility (primary outcome), safety, anxiety, and depression measured by the Hospital Anxiety and Depression Scale, quality of life by the Functional Assessment of Cancer Therapy–Leukemia and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, and symptom burden by MD Anderson Symptom Inventory, the Patient Activation Measure, and the General Self-Efficacy Scale. Results Patient ambassador support was feasible and safe in this population. Patients and patient ambassadors reported high satisfaction with the individually adjusted support, and patients improved in psychosocial outcomes over time. Patient ambassadors maintained their psychosocial baseline level, with no adverse events, and used the available support to exchange experiences with other patient ambassadors and to manage challenges. Conclusion The patient ambassador support program is feasible and has the potential to be a new model of care incorporated in the hematology clinical care setting, creating an active partnership between patients and former patients. This may strengthen the existing supportive care services for patients with acute leukemia. Trial registration NCT03493906

2020 ◽  
Vol 28 (11) ◽  
pp. 5469-5478
Author(s):  
Yemataw Wondie ◽  
Andreas Hinz

Abstract Purpose Cancer is of increasing prevalence in less-developed countries. However, research on the patients’ quality of life (QoL) in these countries is very limited. The aim of this study was to examine QoL of cancer patients in Africa. Method A sample of 256 cancer patients treated in an Ethiopian hospital was examined with the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire EORTC QLQ-C30, the Multidimensional Fatigue Inventory, and the Hospital Anxiety and Depression Scale. A group of 1664 German cancer patients served as a comparison group. Results Most of the scales of the EORTC QLQ-C30 showed acceptable reliability in the Ethiopian sample. Compared with the German cancer patients, the Ethiopian patients showed lower QoL in most dimensions, especially in financial difficulties, physical functioning, pain, and appetite loss (effect sizes between 0.52 and 0.75). Illiteracy, tumor stage, and treatment (surgery and chemotherapy) were associated with QoL in the Ethiopian sample. QoL was strongly correlated with fatigue, anxiety, and depression. Conclusion The EORTC QLQ-C30 is a suitable instrument for measuring QoL in Ethiopia. The detriments in QoL in the Ethiopian patients indicate specific cancer care needs for the patients in a developing country.


2015 ◽  
Vol 33 (1) ◽  
pp. 39-53 ◽  
Author(s):  
Helena Sousa ◽  
Leonor Lencastre ◽  
Marina Guerra

ResumoObjetivos: Caracterizar as variáveis alexitimia, espiritualidade (dimensão crenças espirituais/religiosas e dimensão esperança/otimismo), assertividade e qualidade de vida de mulheres com cancro de mama.Método: A amostra é composta por 85 mulheres com cancro de mama de um Hospital do Grande Porto, com uma média de 47 anos e maioritariamente casadas. As doentes foram avaliadas através de 6 instrumentos de autopreenchimento: Questionário Sociodemográfico e Clínico; Hospital Anxiety and Depression Scale (HADS); Escala de Alexitimia de Toronto (TAS-20); Escala de Avaliação da Espiritualidade; Escala de Assertividade de Rathus e The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQC-30, v.3.0). Resultados: Os resultados indicam que a alexitimia se correlaciona de forma negativa com a dimensão esperança/otimismo e com a assertividade e que estas três variáveis têm influência na qualidade de vida. Mostram ainda a existência de uma correlação positiva entre a idade e a qualidade de vida global, bem como uma correlação negativa do número de anos de escolaridade com a alexitimia e com a dimensão crenças. O modelo preditor da qualidade de vida obtido exclui a influência da assertividade e mostra o impacto negativo da alexitimia e a influência positiva da dimensão esperança/otimismo na qualidade de vida de mulheres com cancro de mama, mesmo depois de controladas as variáveis ansiedade e depressão.


2021 ◽  
Vol 39 (1) ◽  
pp. 77-91
Author(s):  
Cátia Andreia Clara ◽  
Sara Otília Marques Monteiro ◽  
Ana Cláudia Pereira Bártolo

Lung cancer (LC) is one of the most common types of cancer disease worldwide. Studies in the field show that the appearance of a pathology of this form causes changes not only in the patient’s life, namely psychological problems, functional limitations and poorer health due to the clinical consequences of treatments, but also in their family, where caregivers often face the challenge of providing long-term daily care that induces a physical, psychosocial and financial burden (Borges et al., 2017; Hewitt et al., 2003; Tan et al., 2018). The main objective of the present study is to compare and relate the two groups (patients and caregivers) considering the quality of life (QoL) and symptoms of psychological distress (anxiety and depression). The total sample consisted of 30 patient/caregiver dyads. The instruments used were: Hospital Anxiety and Depression Scale; European Organization for Research and Treatment of Quality of Life Questionnaire (EORTC QLQ C-30) and its specific module for lung cancer (LC13); Caregiver Oncology Quality of Life Questionnaire (CarGOQoL) and Zarit Burden Interview Scale (ZBI). The results suggest the influence of depressive symptomatology on patients’ QoL [F(1)=6.390; p<0.05] and depressive and anxious symptomatology and burden on caregivers’ QoL [F(3)=7.815; p<0.001]. A positive association was found between depressive symptomatology of patients and caregivers (r=0.458; p=0.011) and differences in anxious symptomatology were also observed, with a higher result in the patient’s group.


2020 ◽  
pp. JCO.20.01370
Author(s):  
Aurore Perrot ◽  
Thierry Facon ◽  
Torben Plesner ◽  
Saad Z. Usmani ◽  
Shaji Kumar ◽  
...  

PURPOSE To evaluate the effects of daratumumab, lenalidomide, and dexamethasone (D-Rd) versus lenalidomide and dexamethasone (Rd) on patient-reported outcomes (PROs) in the phase III MAIA study. PATIENTS AND METHODS PROs were assessed on the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30-item and the EuroQol 5-dimensional descriptive system at baseline and every 3 months during treatment. By mixed-effects model, changes from baseline are presented as least squares means with 95% CIs. RESULTS A total of 737 transplant-ineligible (TIE) patients with newly diagnosed multiple myeloma were randomly assigned to D-Rd (n = 368) or Rd (n = 369). Compliance with PRO assessments was high at baseline (> 90%) through month 12 (> 78%) for both groups. European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30-item global health status scores improved from baseline in both groups and were consistently greater with D-Rd at all time points. A global health status benefit was achieved with D-Rd, regardless of age (< 75 and ≥ 75 years), baseline Eastern Cooperative Oncology Group (ECOG) performance status score, or depth of response. D-Rd treatment resulted in significantly greater reduction in pain scores as early as cycle 3 ( P = .0007 v Rd); the magnitude of change was sustained through cycle 12. Reductions in pain with D-Rd were clinically meaningful in patients regardless of age, ECOG status, or depth of response. Similarly, PRO improvements were observed with D-Rd and Rd on the EuroQol 5-dimensional descriptive system visual analog scale score. CONCLUSION D-Rd compared with Rd was associated with faster and sustained clinically meaningful improvements in PROs, including pain, in transplant-ineligible patients with newly diagnosed multiple myeloma regardless of age, baseline ECOG status, or depth of treatment response.


2017 ◽  
Vol 32 (2) ◽  
pp. 69-76
Author(s):  
Radka Bužgová ◽  
Lucie Sikorová ◽  
Radka Kozáková ◽  
Darja Jarošová

Background: Currently, there are no studies aimed at evaluating the quality of life (QoL) of patients with end-stage disease during hospitalization and the factors that influence it. Aim: The aim of the research was to identify predictors of change in the QoL of patients hospitalized due to advanced stage of disease. Methods: The sample consisted of 140 patients with end-stage disease who were hospitalized on this account. For evaluation of QoL, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) was used. The Hospital Anxiety and Depression Scale and Karnofsky Performance Status questionnaires were used for the assessment of mental and functional status. For the evaluation of predictors of negative change in QoL, a logistic regression analysis was used. Results: During hospitalization, there was a significant deterioration in the scores given for all domains of the functional QLQ-C30 scale, but not the symptomatic scale. Predictors of change in overall QoL detected were marital status, improved functional status, and depression detected on admission to hospital. Gender and age were found to be protective factors against deterioration in overall QoL. Conclusion: Sociodemographic characteristics and mental and functional status may be associated with change in QoL of patients with end-stage disease during hospitalization.


2008 ◽  
Vol 11 (1) ◽  
pp. 250-258 ◽  
Author(s):  
María Ángeles Pérez San Gregorio ◽  
Agustín Martín Rodríguez ◽  
José Pérez Bernal

The aim of this investigation is to analyze the psychological differences of patients and their relatives according to the formers' post-transplantation anxiety. We used two groups of participants: transplant patients (n = 166) and close relatives (n = 166). Four questionnaires were applied: a Psychological Survey (to both groups), the Hospital Anxiety and Depression Scale, and the Quality of Life Questionnaire (to the transplant patients), and the Leeds Scales for the Self-Assessment of Anxiety and Depression (to the relatives). Participants were assessed twice: post-Intensive Care Unit (ICU; when patients were moved from the ICU to the Transplantation Unit) and post-hospital (one year after transplant). Results showed that high anxiety in patients just after organ transplant was related to an increase of anxiety and depression symptoms both in patients and relatives one year after transplant; it was also related to a decrease in the quality of life of these patients.


2017 ◽  
Vol 17 (2) ◽  
pp. 458-466 ◽  
Author(s):  
Byeongsang Oh ◽  
Thomas Eade ◽  
Andrew Kneebone ◽  
George Hruby ◽  
Gillian Lamoury ◽  
...  

Background. Guidelines surrounding optimum needle retention duration in acupuncture have not been established, despite a growing evidence base for acupuncture over recent decades. This retrospective study explored the effect of varying acupuncture needle retention durations in cancer patients. Method. Patients received either 2 (n = 35), 10 (n = 53), or 20 minutes (n = 54) of acupuncture once a week for 6 weeks. Outcomes of anxiety and depression, stress, fatigue, and quality of life (QOL), with the Hospital Anxiety and Depression Scale, Perceived Stress Scale, Functional Assessment of Cancer Therapy–Fatigue, and European Organization for Research and Treatment of Cancer Quality of Life, were measured at baseline and at 6 weeks following the intervention. Results. The mean age of participants was 58 years (n = 152). The majority were female, diagnosed with breast cancer. Depression, stress, fatigue, and QOL were significantly improved in all 3 groups at 6 weeks postintervention. No significant differences in all outcomes were found between the 3 groups (≤2 vs 10 minutes vs 20 minutes). There were no differences with the satisfaction of the acupuncture services and perceived efficacy of acupuncture among the 3 groups. More than 95% of participants indicated that they would recommend acupuncture to other cancer patients, friends, and their family members. Conclusion. The efficacy of acupuncture may not only depend on needle retention duration, but may also be associated with multiple factors. Considering the limitations of this study design, robust randomized controlled studies are warranted to confirm the findings.


2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 171-171
Author(s):  
Oscar Galindo Vazquez ◽  
Mayra CU Menes ◽  
David Ortiz ◽  
Abelardo Meneses-Garcia ◽  
Jose Luis Aguilar ◽  
...  

171 Background: Cervical cancer is considered one of the most frequent cancers among women and with the greatest causes of death in the world. In Mexico it is considered the second cause of death. Objective: The identify predictors of quality-of-life, symptomatology of anxiety and depression in patients with cervical cancer. Methods: 192 patients with cervical cancer aged between 44 and 60 years were included, through interview and consultation of the clinical file, information on sociodemographic and clinical variables were obtained. Instrument: European Organization Scale for Cancer Research and Treatment and Quality of Life (EORTC QLC-C30) and Hospital Anxiety and Depression Scale (HADS). Statistical analysis: Chi square or Fisher´s exact test. The association of the variables was evaluated by logistic regression analysis. Results: 48% had poor quality of life, 24% with depression, and 29% with anxiety.The predictors of a low quality of life are: presenting one or more comorbidities, family history with cancer, presenting anxious, and depressive symptoms Conclusions: Psychological assumptions are predictors of variables such as quality of life, in a population with cervical cancer, in Mexico this group of patients have low educational and economic levels. Psychosocial care programs are required in this group of Latina women.


2021 ◽  
Vol 9 (1) ◽  
Author(s):  
Lucía Dafauce ◽  
David Romero ◽  
Carlos Carpio ◽  
Paula Barga ◽  
Santiago Quirce ◽  
...  

Abstract Background Severe asthma affects a small population but carries a high psychopathological risk. Therefore, the psychodemographic profile of these patients is of interest. A substantial prevalence of anxiety, depression, alexithymia and hyperventilation syndrome in severe asthma is known, but contradictory results have been observed. These factors can also affect patients’ quality of life. For this reasons, our purpose is to evaluate the psychodemographic profile of patients with severe asthma and assess the prevalence of anxiety, depression, alexithymia and hyperventilation syndrome and their impact on the quality of life of patients with severe asthma. Methods A cross-sectional study of 63 patients with severe asthma. Their psychodemographic profile was evaluated using the Hospital Anxiety and Depression Scale (HADS), Toronto Alexithymia Scale (TAS-20), Nijmegen questionnaire and Asthma Control Test (ACT) to determine the state of anxiety and depression, alexithymia, hyperventilation syndrome and control of asthma, respectively. Quality of life was assessed with the Mini Asthma Quality of Life Questionnaire (Mini-AQLQ). Results The mean age was 60 ± 13.6 years. Personal psychopathological histories were found in 65.1% of participants, and 8% reported previous suicidal attempts. The rate of anxiety and/or depression (HADS ≥ 11) was 68.3%. These patients present higher scores on the TAS-20 (p < 0.001) for the level of dyspnea (p = 0.021), and for emotional function (p = 0.017) on the Mini-AQLQ, compared with patients without anxiety or depression. Alexithymia (TAS-20 ≥ 61) was observed in 42.9% of patients; these patients were older (p = 0.037) and had a higher HADS score (p = 0.019) than patients with asthma without alexithymia. On the other hand, patients with hyperventilation syndrome (Nijmegen ≥ 23) scored higher on the HADS (p < 0.05), on the Mini-AQLQ (p = 0.002) and on the TAS-20 (p = 0.044) than the group without hyperventilation syndrome. Quality of life was related to anxiety-depression symptomatology (r =  − 0.302; p = 0.016) and alexithymia (r =  − 0.264; p = 0.036). Finally, the Mini-AQLQ total score was associated with the Nijmegen questionnaire total score (r =  − 0.317; p = 0.011), and the activity limitation domain of the Mini-AQLQ correlated with the ACT total score (r = 0.288; p = 0.022). Conclusions The rate of anxiety, depression, alexithymia and hyperventilation syndrome is high in patients with severe asthma. Each of these factors is associated with a poor quality of life.


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