RESUMO
PURPOSE: To explore the symptom experience and self-management strategies of adults undergoing hematopoietic stem cell transplantation after hospital discharge. METHODS: A longitudinal qualitative study was employed. A heterogeneous sample of 22 patients who underwent hematopoietic stem cell transplantation from August 2022 to April 2023 were included. Semi-structured interviews were conducted at three time points post-discharge and provided a dataset of 56 interviews. The content analysis method was used for manual analysis. This study followed the COREQ checklist. RESULTS: The data from this study were categorized into four themes and 14 subthemes: (1) complexity and multidimensionality of symptom experience: diversity, dynamism, continuity, relatedness, and functional loading; (2) multiple variations in symptom self-management; (3) barriers to symptom self-management: limited access to information resources, insufficient awareness and skills in symptom self-management, lack of economic and social support, and difficulties in medical visits and reviews; and (4) facilitators of symptom self-management: perceived benefits, experience-driven, and peer experiences. CONCLUSION: Patients undergoing hematopoietic stem cell transplantation experience multiple and complex symptom experiences after hospital discharge, and their symptom self-management remains challenging. The findings underscore the necessity for healthcare professionals to regularly and consistently evaluate the symptoms and self-management practices of patients undergoing hematopoietic stem cell transplantation and execute focused interventions to alleviate their symptom load and enhance their long-term well-being.
RESUMO
Purpose: To explore symptom experience and symptom clusters among Jordanian women with breast cancer and investigate whether these clusters predict patients' spiritual well-being. Patients and Methods: A sample of 142 Jordanian women with breast cancer were asked to complete the Memorial Symptom Assessment Scale (MSAS), Functional Assessment of Chronic Illness Therapy- Spiritual Well-being (FACIT-Sp) scale, and socio-demographic questionnaire. Exploratory factor analysis was used to group symptoms into clusters, and multiple linear regression was used to explore the symptom clusters that predict spiritual well-being. Results: The most prevalent symptoms among women with breast cancer were fatigue, anxiety, tension, and pain. All these symptoms have a prevalence greater than 50%. Three clusters were found: treatment-related symptom cluster consisting of eight symptoms, gastrointestinal symptom cluster consisting of seven symptoms, and psychological symptom cluster consisting of five symptoms. The psychological symptom cluster was the only cluster predicting the women's spiritual well-being (t (141) = -3.049; p < 0.01). Conclusion: Women with breast cancer experience several concurrent symptoms and symptom clusters. Screening for psychological symptom clusters and their treatment improves patients' spiritual well-being. The majority of women with breast cancer did not receive any complementary therapies and hardly any spiritual or psychological support, which should be provided in the future to support their spiritual well-being.
RESUMO
PURPOSE: This study aims to identify the factors influencing psychosocial adjustment and its subdomains. METHODS: A descriptive cross-sectional study was conducted with 176 young adults (men 55.7%, 30.5 ± 5.9 years) diagnosed with a hematologic malignancy in South Korea. Psychological adjustment, symptom experience, and type D personality were assessed using self-report questionnaires. Clinical characteristics were extracted from the medical record. Stepwise multiple regression was conducted to identify the factors influencing psychosocial adjustment. RESULTS: The predictors of difficulties in psychosocial adjustment were high symptom experience, type D personality, being unemployed, low functional status, and short time since the last chemotherapy. By subdomain of psychosocial adjustment, predictors of low healthcare orientation were high symptom experience, woman, and type D personality, and predictors of low vocational environment were high symptom experience, being unemployed, short duration of disease, low functional status, and diagnosis. The factors influencing low domestic environment were high symptom experience, being unemployed, and low functional status, and the factor influencing low sexual relationships was high symptom experience. The predictor of low extended family relationships was high symptom experience; predictors of low social environment were high symptom experience and short duration of disease; and predictors of low psychological distress were high symptom experience, type D personality, and being unemployed. CONCLUSION: As young adults with higher symptom experiences, type D personality, low functional status, and shorter time since the last chemotherapy, and who are unemployed experience difficulties in psychosocial adjustment, healthcare professionals should evaluate their psychosocial adjustment and develop strategies to improve the same.
Assuntos
Adaptação Psicológica , Neoplasias Hematológicas , Humanos , Feminino , Estudos Transversais , Masculino , Adulto , Neoplasias Hematológicas/psicologia , Neoplasias Hematológicas/terapia , República da Coreia , Adulto Jovem , Inquéritos e Questionários , Ajustamento Emocional , Personalidade Tipo DRESUMO
Background: The presence of poorly controlled symptoms negatively impacts the quality of life (QoL) throughout cancer treatment. The purpose of this multisite study was to explore the relationship between QoL and symptom adverse events (AEs) in children with advanced cancer over 6 months. Method: A prospective and longitudinal descriptive study design was used to collect QoL and symptom AE data from children aged 2 to 18 with advanced cancer. QoL was measured using the Pediatric Quality of Life Inventory (PedsQLTM) Cancer Module 3.0 and symptom AEs were measured using the Pediatric Patient-Reported Outcome-Common Terminology Criteria for AEs (PRO-CTCAEs®). Descriptive statistics were used to describe QoL and symptom AE data. Correlational analyses and generalized linear mixed models were used to examine the relationship between symptom AEs and QoL. Results: Forty-nine children participated in the study. The mean total PedsQLTM score was 73.86 for the sample across all time points. Children diagnosed with a central nervous system (CNS) tumor reported poorer QoL compared to children diagnosed with a hematologic malignancy or non-CNS solid tumor. Symptom frequency AEs of anxiety, pain, nausea, insomnia, hot flashes, and fatigue severity demonstrated the strongest and most significant negative correlation with total QoL scores. Analyses of the relationship between QoL and symptom AEs over time revealed time-specific significant differences with children who experienced frequency AEs of nausea, and anxiety reporting poorer QoL at time point 4 (week 8). Discussion: The Ped PRO-CTCAE® and PedsQLTM can be used to evaluate the relationship between symptom AEs and QoL in practice and in future research.
Assuntos
Neoplasias , Qualidade de Vida , Humanos , Criança , Estudos Longitudinais , Estudos Prospectivos , Neoplasias/complicações , Medidas de Resultados Relatados pelo Paciente , Náusea/etiologiaRESUMO
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.
Assuntos
Doença de Moyamoya , Qualidade de Vida , Humanos , Adolescente , Qualidade de Vida/psicologia , Estudos Transversais , EmoçõesRESUMO
Introduction: Despite the World Health Organization declaring COVID-19 no longer a public health emergency, reports of long COVID persist globally, raising concerns about its impact on individuals. Objective: This retrospective study aimed to explore the symptom experiences of individuals with long COVID-19 and examine the relationship between those experiences and perceived negative health status in Thailand. Methods: The study focused on individuals with moderate to severe COVID-19 infections. Between July 3, 2022 and December 1, 2022, we conducted telephone interviews with 86 individuals who tested positive for SARS-CoV-2 and received outpatient care in Bangkok. The COVID-19 Yorkshire Rehabilitation Screening was utilized to measure symptom occurrence, duration, severity, and health status on an 11-point numerical rating scale from 0 (none or excellent) to 10 (the worst). A Spearman rank correlation was used to analyze the relationships between long COVID symptoms and negative perception of health status. Results: Among the participants, 75.6% had long COVID, with a median of three symptoms lasting for a median duration of 5.6 months. Difficulties in performing daily activities were most common, reported by 50.8% of participants. The majority (80.0%) experienced itching, headache, cognition, muscle pain, continence, and sleeping problem for 6 months. Loss of taste was the most severe symptom, with a mean severity rating of 8.8. There were significant positive relations between a negative perception of health status and multiple symptoms, symptom severity, functional disability, and additional symptoms. Conclusion: Individuals with moderate to severe COVID-19 infection who experienced long COVID had poorer perceived health status. To effectively manage and improve the health status of individuals with long COVID, nurses should provide follow-up care, assess not only the occurrence of symptoms but also their duration and severity, and evaluate performance outcomes.
RESUMO
Chemotherapy can cause many distressing side effects, potentially impacting treatment completion and quality of life in adolescent and young adult (AYA) patients with cancer. To identify ways to help mitigate chemotherapy-related symptoms, we sought to elicit barriers and facilitators to managing symptoms experienced by AYAs with cancer through interviews. Qualitative thematic analysis identified three main domains: (1) managing chemotherapy symptoms (e.g., medication, home remedies), (2) anticipating and mitigating symptoms (e.g., management of symptoms at home, anticipatory guidance), and (3) knowing when to seek care (e.g., unexpected and unusual symptoms). This study elucidated that AYAs can successfully manage symptoms at home when given the proper guidance and this could be a focus of future efforts to improve outcomes in this population. The Clinical Trial Registration number is NCT04594096.
Assuntos
Neoplasias , Qualidade de Vida , Humanos , Adolescente , Adulto Jovem , Neoplasias/tratamento farmacológicoRESUMO
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.
Assuntos
Letramento em Saúde , Neoplasias Pulmonares , Humanos , Apoio Familiar , Estudos Transversais , Neoplasias Pulmonares/psicologia , Medo/psicologia , Inquéritos e QuestionáriosRESUMO
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.
Assuntos
Transplante de Rim , Qualidade de Vida , Humanos , Estudos de Coortes , Inquéritos e Questionários , Estudos LongitudinaisRESUMO
INTRODUCTION: Exploring symptom experiences of older men during metastatic prostate cancer treatment can help clinicians identify unmet supportive care needs that, if addressed, could improve toxicity management and enhance patient wellbeing. Previous qualitative studies of older adults with advanced prostate cancer have focused on the psychological experience rather than the overall symptom experience. Therefore, the objective of this study was to understand the lived experience of symptoms and supportive care needs in older men undergoing treatment for metastatic prostate cancer. MATERIALS AND METHODS: Semi-structured interviews were conducted with older adults (aged 65+) who completed their first cycle of chemotherapy, androgen-axis targeted therapies, or radium-223 for metastatic castrate-resistant and sensitive prostate cancer at the Princess Margaret Cancer Centre, Toronto, Canada. Six coders worked in pairs to review interview transcripts and conduct a thematic analysis. A consensus was reached through team discussions. Topics of interest included symptom experiences, the impact of symptoms on daily life, symptom management strategies, and suggestions for external support. RESULTS: Thirty-six interviews were conducted with older adults (mean age: 76 years, 92% with metastatic castrate-resistant prostate cancer) who started chemotherapy (n = 11), androgen-axis targeted therapies (n = 19), or radium-223 (n = 6). The most common treatment-specific symptoms included: fatigue, pain, sleep disturbances, mood disturbances, and gastrointestinal symptoms. Four themes on the impact of symptoms on daily life emerged: resting more than usual, changes in mobility, changes in maintaining activities of daily living, and not feeling up to most things. It is important to note that participants who underwent chemotherapy have previously completed other lines of treatment and had more advanced disease, possibly contributing to higher prevalence of symptoms and greater impact on daily life. Four themes on symptom management strategies emerged: positive support systems, seeking help, interventions by healthcare providers, and self-management strategies. Suggestions for external support included building social support networks, improving health literacy, improving continuity of care, receiving support from healthcare providers, engaging in health-seeking behaviours, and addressing unmet supportive care needs. DISCUSSION: Exploring symptom experiences of older men with metastatic prostate cancer provides valuable insights for developing supportive care programs and improving patient care.
Assuntos
Atividades Cotidianas , Neoplasias da Próstata , Idoso , Humanos , Masculino , Androgênios , Neoplasias da Próstata/terapia , Neoplasias da Próstata/psicologia , Pesquisa Qualitativa , Qualidade de Vida/psicologia , Apoio Social , Metástase NeoplásicaRESUMO
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.
Assuntos
Transplante de Rim , Qualidade de Vida , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Estudos Transversais , Transplante de Rim/efeitos adversos , Fatores Sexuais , Análise de Regressão , TransplantadosRESUMO
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.
Assuntos
Transplante de Células-Tronco Hematopoéticas , Autogestão , Adulto , Humanos , Qualidade de Vida , Estudos Longitudinais , Transplante de Células-Tronco Hematopoéticas/psicologia , HospitalizaçãoRESUMO
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.
Assuntos
Neoplasias , Espiritualidade , Ansiedade/epidemiologia , Ansiedade/etiologia , Estudos Transversais , Humanos , Neoplasias/terapia , Cuidados PaliativosRESUMO
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.
Assuntos
Neoplasias , Qualidade de Vida , Criança , Humanos , Neoplasias/tratamento farmacológico , Avaliação de SintomasRESUMO
BACKGROUND: Adults with multiple sclerosis (MS) experience many complex symptoms. However, research is lacking on the best method to record their symptom experience. The primary goal of this study was to test the feasibility of journal writing to capture the description of core symptoms experienced by adults with MS. A secondary goal was to collect self-report symptom data to assess concordance between the journal entries and MS-Related Symptom Checklist (MS-RS) scores. METHODS: A preselected group of participants (n = 5) from the total sample of 16 participants with MS were asked to complete the revised MS-RS and Web-based journal writing for 20 minutes per day for 4 consecutive days over a 4-week period. Feasibility was evaluated by journal completion rates. RESULTS: Most participants found journal writing acceptable as a method for writing about symptoms. Participants were able to write about symptoms that formed clusters: unpredictable physical alterations and unpredictable sensory and emotional changes. Likewise, participants reported frequent fatigue, difficulty sleeping, heat intolerance, and difficulty concentrating/cognitive problems from the revised MS-RS. Disconcordance between revised MS-RS data and journal entries included lack of disclosure of difficulty sleeping and "pins and needles" in the journals. CONCLUSIONS: Preliminary findings from this study provide the personal perspectives of core symptoms experienced by adults with MS. These results provide preliminary evidence of the feasibility of journal writing, along with self-report survey, to describe symptoms in adults with MS.
RESUMO
Rural residents with heart failure (HF) face more challenges than their urban counterparts in taking action when their symptoms worsen due to limited healthcare resources in rural areas. This may contribute to rural residents' pre-hospital delay in seeking medical care. However, few studies have investigated the relationship between residence locations and pre-hospital delay among patients with HF. Therefore, this study determined whether living in rural areas is associated with pre-hospital delay in patients with HF. A retrospective electronic medical record review was conducted using the data of patients discharged with worsening HF from an academic medical center. Data on postal codes of the patients' residences and their experiences before seeking medical care were obtained. Pre-hospital delay was calculated from the onset of HF symptoms to hospital arrival. A multivariate linear regression analysis was performed to determine the relationship between residence location and pre-hospital delay. The median pre-hospital delay time of all patients was 72 h (N = 253). About half of the patients did nothing to relieve their symptoms before seeking medical care. Living in urban areas was associated with a shorter pre-hospital delay. Patients with HF waited several days after first experiencing worsening of symptoms before getting admitted to a hospital, which may be related to inappropriate interpretation and responses to the worsening of symptoms. Furthermore, we found that rural residents were more vulnerable to pre-hospital delay than their urban counterparts.
Assuntos
Insuficiência Cardíaca , Insuficiência Cardíaca/epidemiologia , Insuficiência Cardíaca/terapia , Hospitalização , Hospitais , Humanos , Estudos Retrospectivos , População RuralRESUMO
BACKGROUND: Whether recognition and prompt response to worsening symptoms are worse in older compared with younger patients with heart failure (HF) is unclear. OBJECTIVES: The aims of this study were to compare older and younger patients (1) perceptions, evaluations, and responses to worsening HF symptoms, and (2) responses once worsening symptoms were perceived. METHODS: A mixed-methods study was conducted and to compare data between older (≥ 65) and younger (< 65) in 185 patients hospitalized with HF. RESULTS: There were few differences attributed to age. In response to higher perceived symptom distress, patients in both groups did nothing and hoped their symptoms would go away (p = 0.004), ignored symptoms and continued doing what they were doing (p = 0.002), or laid down to relax (p < 0.001). CONCLUSIONS: The majority of patients, regardless of age, did not recognize, interpret, and respond appropriately to HF symptoms. Interventions should be tested that target better symptom appraisal and promote appropriate symptom responses in patients with HF across all ages.
Assuntos
Insuficiência Cardíaca , Idoso , Humanos , PercepçãoRESUMO
BACKGROUND: Atrial fibrillation is a complex condition associated with a broad spectrum of symptoms, coupled with variability in the frequency, duration and severity of symptoms. Early treatment seeking is important to reduce the risk of stroke, heart failure and dementia. Despite the increasing prevalence, there remains a limited understanding of the symptom experience prior to an atrial fibrillation diagnosis, and how these experiences influence treatment-related decisions and time frames. AIMS: This qualitative study aimed to explore the symptom experiences of patients receiving an early diagnosis of less than 48 hours and a late diagnosis of 48 hours or more after symptom awareness. METHODS: Twenty-six adults were interviewed guided by the symptom experience model. The symptom checklist was used to probe patient's symptoms further. Data were analysed using a two-step approach to thematic analysis utilising concepts from the symptom experience model. RESULTS: The two groups differed in their perception, evaluation and response to symptoms. The early diagnosis group (n = 6) experienced traumatic, severe and persistent symptoms, evoking concern and urgent treatment seeking. Conversely, the late diagnosis group (n = 20) reported more vague, paroxysmal symptoms that were readily ignored, self-theorised as non-illness related, and engaged in non-treatment strategies. Healthy self-perceptions, past experiences, atrial fibrillation knowledge and healthcare provider interactions influenced early or late treatment seeking. CONCLUSION: For many, the atrial fibrillation pre-diagnosis was a tumultuous period, requiring prolonged periods to recognise symptoms and formulate treatment-seeking responses. This study may promote future research and strategies aimed at facilitating the early identification and response to symptoms among atrial fibrillation patients.
Assuntos
Fibrilação Atrial , Adulto , Fibrilação Atrial/complicações , Fibrilação Atrial/diagnóstico , Fibrilação Atrial/terapia , Diagnóstico Tardio , Autoavaliação Diagnóstica , Nível de Saúde , Humanos , Pesquisa QualitativaRESUMO
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.
Assuntos
Neoplasias da Mama , Assistência Centrada no Paciente , Adulto , Neoplasias da Mama/tratamento farmacológico , Estudos Transversais , Feminino , Humanos , Oncologia , Inquéritos e QuestionáriosRESUMO
AIMS: Self-care in heart failure (HF) is generally sub-optimal and impacts morbidity and mortality. To describe self-care prevalence and explore its relationships with symptom experience, patient needs, and health-care utilization in a Swiss hospital providing regional secondary care. METHODS AND RESULTS: Cross-sectional study, convenience sample of individuals with HF from four campuses of one regional Swiss hospital. Self-care was assessed via the Self-Care of Heart Failure Index (SCHFI) and the European Heart Failure Self-care Behaviour Scale (EHFScBS), symptom experience via the M.D. Anderson Symptom Inventory-HF (MDASI-HF) and needs via the Heart Failure Needs Assessment Questionnaire (HFNAQ). Healthcare utilization reflected the preceding year's hospitalization incidence. A cut-off level of ≥70% indicated adequate self-care. We analysed SCHFI, EHFScBS, MDASI-HF and HFNAQ scores' relationships with hospitalizations using Spearman's rho correlation; no prior hypotheses were stated. Sample of 310 individuals with HF (37.4% female; mean age 76.8; 55% NYHA III). Adequate self-care maintenance, management, and confidence were reported by 24%, 10%, and 61%. respectively. The sample's mean number of experienced symptoms was 12.8 (SD 4.0) and 14.0 (SD 5.8) for needs. Over the previous year, 269 hospitalizations had occurred (median: 0, IQR 1). Hospitalizations positively correlated with self-care; symptom experience with needs. Neither symptom experience nor needs correlated with hospitalizations. CONCLUSION: The findings indicated low self-care levels and suggest a need for increased support to maintain physiological stability, manage symptoms and prevent hospitalizations. This study is the first of its kind in Switzerland and among few studies worldwide to report on self-care, symptom experience, needs, and health-care utilization. Interventional studies are warranted considering baseline self-care capabilities, symptoms, and needs of individuals with HF.