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PURPOSE: To evaluate the application effects of The-Optimal-Lymph-Flow IT System in Chinese patients at high risk of developing breast cancer-related lymphedema. METHODS: A total of 104 breast cancer patients were randomly assigned to either the control group or the intervention group. The intervention group was provided with the The-Optimal-Lymph-Flow program, while the control group received the usual care. Trial outcomes including symptom experience, quality of life, and limb volume were evaluated at baseline, and at end of the 1- and 3-month trials. RESULTS: After controlling for covariates, the incidence of eight symptoms was significantly higher in the control group than in the intervention group. There were significant differences in the changes in the severity of symptoms and arm volume between the two groups from baseline to 3 months after the intervention. CONCLUSIONS: The application of TOLF in patients at high risk of developing lymphedema following breast cancer treatment significantly improved the lymphedema-related symptoms experienced in the early stage after surgery. Trial registration ChiCTR1800016713.
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BACKGROUND: The symptom burden in people with HIV (PWH) is considerable. Nonetheless, the identification of a central symptom, or bridge symptom, among the myriad symptoms experienced by PWH remains unclear. This study seeks to establish networks of symptom experiences within different clusters and investigate the relationships and interconnectedness between these symptoms in PWH. METHODS: A multicenter, cross-sectional descriptive design was carried out in China over two periods: November 2021 to January 2022 and April 2022 to May 2022. A total of 711 PWH completed online questionnaires, providing information on demographics and the 27-item Self-Report Symptom Scale. The symptom network was analyzed using Network/Graph theory, allowing for the exploration of connections between physical, cognitive, and psychological symptoms. This analysis was based on data from a subset of 493 individuals out of the total 711 PWH. RESULTS: A total of 493 PWH who exhibited symptoms out of a total of 711 PWH were analyzed. The average number of symptoms reported was 5.367. The most prevalent symptom was sleep disturbance (37.98%). In the node centrality analysis, a cognitive symptom, 'becoming confusing', emerged as the most central symptom with significant values for node centrality (strength = 1.437, betweenness = 140.000, closeness = 0.003). Fever was identified as the bridge symptom with the highest bridge strength (0.547), bridge closeness (0.053), lower bridge betweenness (23.000), and bridge expectedinfluence (0.285). Overall, our network displayed good accuracy and stability. CONCLUSION: Early identification and assessment of the central or bridge symptoms should be emphasized in clinical practice. According to the findings from network analysis, healthcare providers should proactively explore intervention strategies or bundle care to alleviate the burden of symptoms and enable anticipatory care.
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Infecciones por VIH , Humanos , Estudios Transversales , China/epidemiología , Masculino , Femenino , Infecciones por VIH/psicología , Infecciones por VIH/epidemiología , Adulto , Persona de Mediana Edad , Encuestas y Cuestionarios , Adulto Joven , Evaluación de Síntomas/estadística & datos numéricosRESUMEN
PURPOSE: The psycho-emotional symptom experiences and health-related factors that influence the quality of life of adolescents with Moyamoya disease are still not fully understood. The aim of this study is to identify the daily physical and accompanying psychological symptom experiences of such adolescents, and to examine how health-related factors contribute to their quality of life. DESIGN AND METHOD: This study employed a descriptive cross-sectional research design. Data on a total of 134 adolescents with Moyamoya disease was analyzed in order to develop a path analysis. Data were collected from October 2019 to January 2021 in South Korea. The theory of salutogenesis was employed in order to develop a hypothetical model for this path analysis. Participants were given a self-reporting questionnaire. Descriptive analysis and path analysis were conducted based on the results. RESULTS: Adolescents with Moyamoya disease experienced several negative emotions simultaneously, regardless of the severity of their physical symptoms. The path analysis revealed that stress, a sense of coherence, behavior, and the support of friends were significant contributors to adolescents' quality of life. CONCLUSIONS: Adolescents with Moyamoya disease have multifaceted symptom experiences in their daily lives. To enhance their quality of life, it is crucial to provide support that can help strengthen their capacity for stress management and enhance their sense of coherence. PRACTICAL IMPLICATIONS: This study provides evidence that nurses should offer anticipatory information to adolescents with Moyamoya disease regarding the symptoms they will frequently encounter, and develop interventions to enhance their quality of life.
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Enfermedad de Moyamoya , Calidad de Vida , Humanos , Adolescente , Calidad de Vida/psicología , Estudios Transversales , EmocionesRESUMEN
BACKGROUND: Health-related quality of life (HRQOL) is an increasingly important patient-reported outcome in kidney transplant recipients (KTRs). This study explored relationships between symptom prevalence and burden with HRQOL, and age and gender differences in symptom experience. METHODS: Eligible Dutch KTRs transplanted in Leiden University Medical Center were invited for this cross-sectional study. HRQOL, and occurrence and burden of 62 symptoms were measured using validated questionnaires. Univariate and multivariate regression analysis were used for investigating the associations of symptom experience with mental and physical HRQOL, and differences in symptom experience between genders and KTRs of diverse age groups. RESULTS: A total of 631 KTRs were analyzed; the mean (standard deviation) age was 61.3 (11.3) years, and 62% were male. The median (interquartile range) number of symptoms was 14 (7-22), with a burden of 20 (8-37; range 0-244). Per extra symptom, physical and mental HRQOL decreased [-0.41 (-0.50; -0.31) and -0.51 (-0.59; -0.42), respectively, P < .001]. Most occurring symptoms were bruises, tiredness, lack of energy, urge to urinate at night and dry skin. Sexual problems were considered most burdensome. Female KTRs reported more symptoms than men. Amongst others, younger KTRs experienced more (18-50 > 50-65 ≥65 years) feelings of depression and both female and younger KTRs reported higher symptom prevalence concerning changes in physical appearance. CONCLUSION: KRTs' symptom experience differed depending on gender and age, highlighting the need to develop tailored treatment strategies to reduce symptom experience and subsequently improve HRQOL.
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Trasplante de Riñón , Calidad de Vida , Humanos , Masculino , Femenino , Persona de Mediana Edad , Estudios Transversales , Trasplante de Riñón/efectos adversos , Factores Sexuales , Análisis de Regresión , Receptores de TrasplantesRESUMEN
The purpose of our article is to investigate the impact of symptom experience on health related quality of life (HRQOL) in kidney transplant recipients (KTRs) and whether illness perceptions mediated this impact. Symptom experience, illness perceptions, and HRQOL were measured at transplantation and 6 weeks after transplantation in KTRs in an ongoing Dutch cohort study. Multivariable linear regression models were used for the analysis. 90 KTRs were analyzed. Fatigue and lack of energy were the most prevalent and burdensome symptoms at transplantation. Mental HRQOL at 6 weeks after transplantation was comparable to that of the general Dutch population (mean [standard deviation, SD]: 49.9 [10.7]) versus 50.2 [9.2]), while physical HRQOL was significantly lower (38.9 [9.1] versus 50.6 [9.2]). Experiencing more symptoms was associated with lower physical and mental HRQOL, and the corresponding HRQOL reduced by -0.15 (95%CI, -0.31; 0.02) and -0.23 (95%CI, -0.42; -0.04) with each additional symptom. The identified mediation effect suggests that worse symptom experiences could cause more unhelpful illness perceptions and consequently lead to lower HRQOL. Illness perceptions may explain the negative impact of symptom experience on HRQOL. Future studies at later stages after kidney transplantation are needed to further explore the mediation effect of illness perceptions and guide clinical practice to improve HRQOL.
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Trasplante de Riñón , Calidad de Vida , Humanos , Estudios de Cohortes , Encuestas y Cuestionarios , Estudios LongitudinalesRESUMEN
AIMS: Fear of progression of cancer patients can affect their psychological well-being, while research on fear of progression of advanced lung cancer patients is limited. This study aimed to describe fear of progression among advanced lung cancer patients and explore the relationships among symptom experience, family support, health literacy, and fear of progression. DESIGN: This study was a cross-sectional study. METHODS: Convenience sampling was used to select advanced lung cancer patients from September 2021 to January 2022. The Chinese version of the Fear of Progression Questionnaire-Short Form, Lung Cancer Module of the MD Anderson Symptom Inventory, Family Support Questionnaire, and Health Literacy Scale for Patients with Chronic Disease were used to collect data. The structural equation modelling was used to analyse the relationships among symptom experience, family support, health literacy, and fear of progression. RESULTS: Of 220 patients, 31.8% had dysfunctional fear of progression. Better symptom experience, higher family support, and higher health literacy were correlated directly with lower fear of progression. Higher health literacy was associated indirectly with lower fear of progression through the mediation of better symptom experience. CONCLUSION: Fear of progression among advanced lung cancer patients needs attention. Strengthening symptom management, building a strong system of family support, and improving patients' health literacy may be effective strategies to reduce fear of progression. IMPACT: The research aimed to increase our understanding of the relationships among symptom experience, family support, health literacy, and fear of progression. Fear of progression screening should be integrated into the healthcare trajectory of advanced lung cancer patients. The results emphasize that improving symptom management, family support, and health literacy is important to alleviate fear of progression. Further interventions are warranted to relieve fear of progression for advanced lung cancer patients. PATIENT OR PUBLIC CONTRIBUTION: No public or patient involvement.
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Alfabetización en Salud , Neoplasias Pulmonares , Humanos , Apoyo Familiar , Estudios Transversales , Neoplasias Pulmonares/psicología , Miedo/psicología , Encuestas y CuestionariosRESUMEN
PURPOSE OF REVIEW: We aimed to review the recent research on the childhood cancer symptom experience pertaining to socioeconomic factors, biology and genetics, growth and development, family psychosocial dynamics, and social and treating environments to begin to formulate recommendations for a personalized approach to symptom management. RECENT FINDINGS: Cancer symptoms are common and distressing in children and negatively impact child and family quality of life. Many interacting factors influence children's cancer symptoms experiences, including the assessment and management of such symptoms. This paper highlights several gaps in the research related to the cancer symptom experience including routine symptom assessment, the impact of socioeconomic, biological, and genetic factors on symptoms, and the establishment of effective symptom management partnerships with families. Based on our findings, we provide recommendations related to that research which is ready to be implemented into clinical practice and areas for needed future efforts.
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Neoplasias , Calidad de Vida , Niño , Humanos , Neoplasias/tratamiento farmacológico , Evaluación de SíntomasRESUMEN
PURPOSE: The aim of this study was to explore the symptom experience and self-management strategies of adult hematopoietic stem cell transplantation patients during hospitalization. METHODS: This was a qualitative descriptive study. A heterogeneous sample of 19 patients who underwent hematopoietic stem cell transplantation from May to October 2021 were enrolled in the study. Semi-structured interviews were conducted at four time points during hospitalization, providing a total of 64 interview datasets. RESULTS: Four themes and 11 subthemes reflecting the symptom experience and self-management strategies of adult hematopoietic stem cell transplantation patients during hospitalization were observed. The four themes were (1) unexpected symptom burden: dynamic, disturbing, co-occurring, and correlative; (2) emotional complexity at different periods; (3) internal predicament: ineffectiveness of symptom management; and (4) external strength: desire for support from multiple sources. Hematopoietic stem cell transplantation patients experienced a complex and dynamic array of symptoms from admission to discharge, and they experienced the dual forces of internal predicament and external strength in symptom self-management during hospitalization. CONCLUSION: The findings of this study emphasize the need for a deeper understanding and precise management of the symptom experience of adult hematopoietic stem cell transplantation patients during hospitalization. Hematopoietic stem cell transplantation nurses need to assess symptoms on an ongoing basis; educate patients on ways to perceive, express, and self-manage multiple symptoms; and develop patients' self-symptom management skills to enhance their symptom relief and quality of life.
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Trasplante de Células Madre Hematopoyéticas , Automanejo , Adulto , Humanos , Calidad de Vida , Estudios Longitudinales , Trasplante de Células Madre Hematopoyéticas/psicología , HospitalizaciónRESUMEN
PURPOSE: To explore the effect of spiritual well-being on the symptom experience of patients with cancer. METHODS: This is a cross-sectional survey that enrolled 459 patients with cancer from three large hospitals in Jordan in 2018. Participants completed questionnaires related to demographic data, spiritual well-being, and symptom experience. Additional information was obtained from the medical record review. We then conducted multiple regression to evaluate if spiritual well-being predicts the patients' reported symptom distress. RESULTS: Patients reported thirty-six symptoms. Of which 15 have a prevalence of more than 30%. Fatigue was the most prevalent symptom (n = 282, 61.4%), followed by pain (n = 243, 52.9%) and anxiety (n = 230, 50.1%). Spiritual well-being predicted 7.1% of the total variance in patients' symptom distress (F, 19.650; p < 0.0001). Additional predictors were gender, education level, having a problem covering the treatment cost, family cancer history, and whether taking a complementary treatment or not. CONCLUSIONS: Patients with cancer experience multiple symptoms related to the disease and its treatment. Improving patients' spiritual well-being through an increased sense of meaning and peace can improve cancer symptom experience by decreasing symptom distress. In general, hospitals in Jordan focus on direct symptom management and do not look after patients' spiritual needs. Raising awareness about the importance of patients' spiritual well-being and providing appropriate spiritual assessment and interventions to patients with spiritual distress can improve patients' symptom experience.
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Neoplasias , Espiritualidad , Ansiedad/epidemiología , Ansiedad/etiología , Estudios Transversales , Humanos , Neoplasias/terapia , Cuidados PaliativosRESUMEN
PURPOSE: Cancer patients undergoing active anti-cancer treatment experience multiple symptoms concurrently. Over the years, studies to improve patients' physical and psychological discomfort by focusing on patients' needs and preferences have reported promising outcomes. This study aims to explore perceived patient-centered care and its association to symptoms experienced by cancer patients undergoing active anti-cancer treatment. METHODS: A cross-sectional study was conducted at an outpatient cancer center between August 2018 and July 2019 among adult cancer patients receiving chemotherapy and biological therapy. Participants were asked by their oncology nurse to complete a self-administered questionnaire which included the three subscales (physical, psychological, and global distress) of the Memorial Symptoms Assessment Scale as well as the perceived patient-centered care questionnaire. To examine the association between participants' perceived patient-centered care and each of the symptoms scale scores, three hierarchical (block-wise) linear regression models were performed. RESULTS: Of the 125 participants, 57 (45.6%) were diagnosed with breast cancer and were treated with chemotherapy either alone (n = 62, 49.6%), with radiotherapy (n = 4, 3.2%), or with biological therapy (n = 45, 36.0%). Hierarchical regression models found that perceived patient-centered care contributed to 11.3%, ß = - .351 (p < 0.001); 8.9%, ß = - .311 (p < 0.001); and 10.3% ß = -.336 (p < 0.001) of the variance of the global distress index, physical symptoms, and psychological symptoms, respectively. CONCLUSIONS: This study shows the importance of perceived patient-centered care in alleviating physical and psychological symptoms and overall distress in cancer patients undergoing active anti-cancer therapy. Our findings call for oncology teams to adopt and implement patient-centered care as part of their routine work.
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Neoplasias de la Mama , Atención Dirigida al Paciente , Adulto , Neoplasias de la Mama/tratamiento farmacológico , Estudios Transversales , Femenino , Humanos , Oncología Médica , Encuestas y CuestionariosRESUMEN
PURPOSE: Cancer survivors continue to experience issues that persist across the survivorship trajectory. This study aims to explore the relationship among survivorship care need, symptom experience, and quality of life (QoL) of multiethnic cancer survivors by using path analytic methods. METHODS: Participants were recruited from an academic medical center in Singapore that provides inpatient and outpatient oncology and hematology service. The Cancer Survivor Unmet Needs measure, physical effects subscale of the Cancer Survivors' Survey of Needs tool, and a Global QoL 10-point Likert scale were used to identify survivorship care needs, symptom experience, and QoL. Descriptive statistics were used to compute sociodemographic information, total survivorship needs, symptom experienced, and quality of life scores. The symptom experience model was used as the hypothetical model. The Analysis of Moment Structure was used to conduct the path analysis to evaluate the relationship between survivorship care needs, symptom experience, and quality of life. RESULTS: Older cancer survivors were more likely to have spent a longer duration having cancer. Males were unlikely to suffer from solid tumor malignancies. Survivors with solid tumor malignancies were less likely to require supportive care. Survivors who require more supportive care were more likely to have a greater symptom burden. Cancer survivors with more symptoms have poorer QoL. The findings from this study partially supported the symptom experience model. CONCLUSIONS: Our findings reveal that cancer survivors continue to experience symptoms across the survivorship trajectory. The results provide information for nurses during the planning and execution of survivorship care.
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Supervivientes de Cáncer/estadística & datos numéricos , Neoplasias/etnología , Calidad de Vida/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias/mortalidad , Encuestas y CuestionariosRESUMEN
BACKGROUND: Currently, no available tool easily and effectively measures both the frequency, intensity and distress of symptoms among patients receiving radiotherapy. A core symptom set (fatigue, insomnia, pain, appetite loss, cognitive problems, anxiety, nausea, depression, constipation, diarrhoea and skin reaction) has been identified and assessed across oncology research to better understand the pattern of symptoms and treatment side effects. AIM: The aim was to develop a tool measuring the multiple-symptom experience in patients undergoing radiotherapy and evaluate its psychometric properties (validity, reliability and responsiveness). DESIGN: This study has a prospective, longitudinal and quantitative design. METHODS: We developed a patient-reported outcome questionnaire, the Radiotherapy-Related Symptoms Assessment Scale to assess the frequency, intensity and distress associated with symptoms. Patients (n = 175) with brain tumours undergoing proton beam therapy completed the Radiotherapy-Related Symptoms Assessment Scale and the health-related quality of life questionnaire (EORTC QLQ-C30) during treatment. We assessed the validity, reliability and responsiveness of the Radiotherapy-Related Symptoms Assessment Scale and evaluated the validity against QLQ-C30. RESULTS: There were significant questionnaire-questionnaire correlations regarding selected items, primarily fatigue, insomnia and pain, indicating satisfactory criterion-related validity. The Radiotherapy-Related Symptoms Assessment Scale had fair to good retest reliability. CONCLUSION: The Radiotherapy-Related Symptoms Assessment Scale is a valid instrument for assessing symptom intensity and distress in patients with brain tumour undergoing PBT, with psychometric properties within the expected range. The Radiotherapy-Related Symptoms Assessment Scale provides nurses with substantial information on symptom experience but requires little effort from the patient. Additional studies are required to further assess the psychometric properties in patients with different cancer diagnoses receiving conventional radiotherapy.
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Neoplasias Encefálicas , Terapia de Protones , Neoplasias Encefálicas/radioterapia , Humanos , Estudios Prospectivos , Terapia de Protones/efectos adversos , Psicometría , Calidad de Vida , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , Evaluación de SíntomasRESUMEN
PURPOSE: Gastric cancer patients are expected to have considerable supportive care needs; however, few studies have been conducted. This study aimed to understand the unmet needs of gastric cancer patients at different phases of the cancer journey, identify factors contributing to their unmet needs and quality of life (QOL) and explore the relationships among unmet needs, symptom experience, anxiety, depression, and QOL. METHODS: A correlational study was conducted using data from 223 gastric cancer patients. The instruments include the SCNS-SF 34, HADS, MDASI, and EORTC QLQ-C 30 (Korean version). Descriptive statistics, t test/ANOVA, Pearson's correlation, multiple regression, and path analyses were used to analyze the data. RESULTS: Unmet needs in the health system and information domain were the highest. The phase of the cancer journey had a significant association only with physical and daily living unmet needs (p = 0.027). Physical and daily living unmet needs, symptom severity, symptom interference, and depression demonstrated direct effects on QOL. The physical and daily living unmet needs mediated the association between symptom experience (symptom severity and interference with daily living caused by symptoms) and QOL. The overall paths explained 51.6% of the variance in the QOL of gastric cancer patients (p < 0.001). CONCLUSION: The health system and information unmet needs of gastric cancer patients should be fulfilled by reinforcing the continuity of care, professional counseling, and self-care education. Unmet needs in the physical and daily living domain have to be appraised to facilitate improved symptom management to minimize the negative influence on QOL. Factors contributing to the unmet needs and QOL of gastric cancer patients need to be reflected in supportive care planning.
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Necesidades y Demandas de Servicios de Salud , Evaluación de Necesidades , Cuidados Paliativos/métodos , Calidad de Vida/psicología , Neoplasias Gástricas/psicología , Adulto , Anciano , Anciano de 80 o más Años , Ansiedad/etiología , Ansiedad/psicología , Estudios Transversales , Depresión/etiología , Depresión/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Examen FísicoRESUMEN
AIMS: To examine the effects of a group-based physical activity intervention on improvement in physical activity and mitigation of symptom distress among pediatric patients with cancer. METHODS: Based on convenience sampling, 57 pediatric patients with cancer admitted to the cancer center were included in the intervention group. The control group included 57 pediatric patients with cancer from two other hospitals matched to the patients in the intervention group by age, sex, and diagnosis. A group-based physical activity program was implemented among the children in the intervention group, whereas the children in the control group received standard care. Physical activity and symptoms were measured using the Children's Leisure Time Activities Study Survey-Chinese and using the Memorial Symptom Assessment Scale 10-18 at baseline and after the 12th exercise session in both the intervention and control groups. RESULTS: The repeated-measures analysis of variance showed that the main intervention effects on the decrease in light-intensity physical activity and increase in moderate-to-vigorous physical activity were significant between the two groups (P < .001). The group-based physical activity intervention could decrease the scores of psychological symptoms (P < .001), Global Distress Index (P < .001), and physical symptoms (P = .01) when comparing the difference between the two groups before and after the intervention. There was no significant difference in the number of symptoms or the total symptom experience score between the two groups. CONCLUSION: These findings suggest that a group-based physical activity intervention can promote physical activity and relieve psychological and physical symptom distress among pediatric patients with cancer.
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Ejercicio Físico , Neoplasias/rehabilitación , Modalidades de Fisioterapia , Ludoterapia , Calidad de Vida , Adolescente , Niño , Preescolar , Femenino , Hong Kong , Humanos , Masculino , Ejercicios de Estiramiento Muscular , Neoplasias/psicología , Educación del Paciente como Asunto , Pacientes/psicología , Entrenamiento de Fuerza , Deportes , Evaluación de Síntomas , Resultado del Tratamiento , CaminataRESUMEN
AIMS AND OBJECTIVES: The purpose of this study was to examine the levels of symptom experiences and health-related quality of life (HRQOL) among non-small cell lung cancer (NSCLC) patients participating in clinical trials, and to identify the factors influencing their HRQOL. BACKGROUND: It has known that lung cancer patients experience more symptoms than other cancer patients. With the introduction of new treatment for NSCLC patients, the patients have experienced different types of symptoms and it could influence their HRQOL. DESIGN: A cross-sectional study design was adopted. METHODS: One hundred and eighteen NSCLC patients enrolled in clinical trials at two Korean tertiary hospitals participated in this study. Participants completed the Memorial Symptom Assessment Scale (MSAS) and the Short-Form Health Survey 36 (SF-36) version 2. Demographic, disease-related and clinical trial-related characteristics were collected. Descriptive statistics, t test, Mann-Whitney test, ANOVA, Pearson correlation and multiple regression were used for data analysis. STROBE checklist was applied as the reporting guideline for this study (see Supporting Information File S1). RESULTS: The total MSAS score was relatively low, and "lack of energy" was the highest symptom level in frequency, severity and distress. The level of physical HRQOL was higher than the cut-off score, and the level of mental HRQOL was lower than the cut-off score. The factors affecting physical HRQOL were symptom experience, performance status and smoking history. The factors affecting mental HRQOL were symptom experiences and family income. CONCLUSIONS: Symptom experience was a main affecting factor of physical and mental HRQOL. Interventions for relieving symptom experiences should be developed, and performance status, smoking history and financial burden of lung cancer patients should be considered in clinical settings. RELEVANCE TO CLINICAL PRACTICE: HRQOL may be improved by reducing the level of symptom experience. Healthcare professionals should assess patients' symptom experience and develop patient-centred symptom management programmes.
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Carcinoma de Pulmón de Células no Pequeñas/fisiopatología , Carcinoma de Pulmón de Células no Pequeñas/psicología , Neoplasias Pulmonares/fisiopatología , Neoplasias Pulmonares/psicología , Calidad de Vida , Adulto , Anciano , Ensayos Clínicos como Asunto , Estudios Transversales , Fatiga/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Estadísticas no Paramétricas , Encuestas y CuestionariosRESUMEN
PURPOSE: High-dose melphalan and autologous stem cell transplantation (ASCT) are associated with high symptom burden. This study aimed to explore multiple myeloma (MM) patients' experience of symptom frequency, intensity, and distress during therapy. METHODS: This descriptive longitudinal study enrolled 29 MM patients who completed the 43-item PROVIVO questionnaire, measuring symptom experience across the dimensions of frequency, intensity, and distress at four assessment points: hospital admission (T0), leucocyte nadir (T1), discharge (T2), and 30 days post discharge (T3). Symptom assessment covered five categories: (1) physical, (2) emotional, (3) cognitive, (4) male/female urogenital symptoms, and (5) follow-up care planning (e.g., financial problems). Results were displayed as heat maps and bubble graphs for each patient, differences between T0 and T4 individually assessed, and intensity (IMS) and mean distress scores (DMS) calculated on a scale from 0 to 4. RESULTS: The most frequent, intense, and distressing physical symptoms were fatigue, diarrhea, and decreased appetite. As expected, peak symptom intensity (decreased appetite 2.79) and distress (diarrhea 2.11) were reported during high-dose melphalan and the leucocyte nadir (T1). Thereafter, most symptoms' intensity and distress improved. Items on urogenital symptoms remained predominantly unanswered or patients were sexually inactive. CONCLUSIONS: PROVIVO enabled exploration of various dimensions of MM patients' symptom experiences, which differed substantially before and after ASCT. Our results suggest that high-dose melphalan, ASCT, and other intensive novel agent therapies warrant targeted symptom management programs that include focused patient support.
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Trasplante de Células Madre Hematopoyéticas/métodos , Melfalán/uso terapéutico , Mieloma Múltiple/tratamiento farmacológico , Trasplante Autólogo/métodos , Adulto , Anciano , Femenino , Humanos , Estudios Longitudinales , Masculino , Melfalán/administración & dosificación , Melfalán/farmacología , Persona de Mediana Edad , Mieloma Múltiple/patologíaRESUMEN
CONTEXT: Understanding patients' symptom experiences is essential to providing effective clinical care. The discussion between patients and physicians of symptom meaning and its significance, however, is ill understood. OBJECTIVES: To investigate palliative care physicians' understanding of symptom meaning, and their experiences of and attitudes towards the discussion of symptom meaning with patients. METHODS: Semi-structured interviews were conducted (N = 17) across Sydney, Australia. Transcripts were analysed using framework analysis. RESULTS: Six key themes were identified: (1) definitions of symptom meaning (causal meanings, functional impact, existential impact, and cascade of meanings); (2) meanings are personal (demographic, culture, spiritual, and family differences); (3) eliciting meanings requires subtlety and trust (following the patient's cues); discussing meaning can be (4) hard (for the patient and health professional); (5) therapeutic (assuaging fears, feeling listened to and valued, increased sense of control, and reduced symptom distress); and (6) enhances clinicians' practice and work satisfaction (provision of more tailored care, reassurance through the provision of information, and strengthening of doctor-patient relationship). CONCLUSIONS: Exploring symptom meaning can serve to provide information, alleviate anxiety, and facilitate individualised care, but only when patients present cues or are open to discuss symptom-related concerns. However, various barriers hinder such dialogue in consultations. Greater awareness of symptom meaning and its influence may facilitate physicians exploring symptom meaning more with patients in the future.
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Cuidados Paliativos/normas , Médicos/normas , Investigación Cualitativa , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana EdadRESUMEN
Symptom management is one of the primary goals of care for advanced pancreatic cancer (APC) patients. The purpose of this study was to examine recorded healthcare encounters to better understand the symptom experiences of APC patients as told to healthcare providers (HCP). In this qualitative descriptive study, content analysis was used to analyze 37 transcripts of audio-recorded, naturally occurring encounters among APC patients, caregivers, and HCP. Transcripts were drawn from a larger randomized controlled study, which recruited advanced cancer patients and caregivers across the United States. Findings revealed that APC patients and caregivers experienced multiple troubling symptoms. Thirty-seven APC patients and 34 caregivers discussed 10 types of symptoms: pain, fatigue, abnormal bowel movements, decreased appetite, nausea and vomiting, sleeping problems, neurological problems, skin problems, psychological distress, and taste changes. The patients and caregivers discussed various aspects of the symptoms, including the nature of the symptoms, how the symptoms affected their lives, and the way they managed symptoms. Some symptoms were described as severe, life-changing, and highly distressing. HCP should be attuned to the wide variety of ways in which APC patients experience, manage, and live with symptoms. A systematic approach to address symptoms during encounters may improve care and efficiency.
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Neoplasias Pancreáticas/complicaciones , Estrés Psicológico/etiología , Evaluación de Síntomas , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Neoplasias Pancreáticas/psicología , Investigación Cualitativa , Estados UnidosRESUMEN
Claudication is the most commonly recognized peripheral artery disease (PAD) symptom, but not the most prevalent. Only 7.5%-33% of patients report claudication as being part of their symptom experience. However, there is little evidence supporting atypical symptom reporting. The study purpose was to describe the full spectrum of symptoms experienced by older and younger individuals with PAD. Semistructured interviews were conducted with a purposive sample of 38 community-dwelling adults aged 49-83 years; transcripts were analyzed using content analysis. Six themes emerged: symptom descriptors (claudication and atypical), maintaining equilibrium, temporal fluctuations, the role of exercise, perceived impact on quality of life, and disease presence and treatment. Results suggest heavy reliance on claudication can result in mis- or under-diagnosis of PAD. Further research is needed to validate the correspondence of atypical symptoms with ischemic changes during exercise to broaden currently accepted symptom locations and descriptors associated with PAD.
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Claudicación Intermitente/psicología , Enfermedad Arterial Periférica/psicología , Calidad de Vida , Anciano , Anciano de 80 o más Años , Ejercicio Físico , Femenino , Humanos , Claudicación Intermitente/etiología , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Encuestas y CuestionariosRESUMEN
The number of survivors after allogeneic hematopoietic stem cell transplantation (HSCT) continues to increase, yet their survivorship experience has not been fully characterized. This study examines the health status and health-related quality of life (HRQL) of HSCT survivors. The aims of the study were to: (1) explore the baseline and change over time in these health outcomes, and (2) characterize subgroups experiencing adverse outcomes. In this longitudinal study, adults who survived >3 years from date of allogeneic HSCT completed a series of patient-reported outcome measures annually, including measures of health status, HRQL, and symptoms. Data were analyzed using hierarchical linear modeling. Subjects (N = 171) were on average 44 (±13.5) years of age and primarily male (62.6%); 40% were Hispanic. Mean scores for physical and mental health and HRQL were preserved relative to population norms. Hierarchical linear modeling revealed no significant change in the mean trajectories of these outcomes, although significant between-individual variability was observed. When controlling for demographic and clinical factors, physical symptom distress negatively affected all outcomes. The impact of symptom distress on physical health varied based on time since HSCT; impairment in physical health was greatest in survivors experiencing high symptom distress and who were within the first decade post transplantation. Extended treatment with systemic immunosuppressive therapy also predicted inferior physical health. These findings suggest that patient-centered outcomes are preserved relative to normative values and are generally stable after allogeneic HSCT, although survivors with persistent symptoms and those receiving systemic immunosuppression experience impairments in health status and HRQL.