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1.
Medicine (Baltimore) ; 101(39): e30868, 2022 Sep 30.
Artigo em Inglês | MEDLINE | ID: mdl-36181089

RESUMO

The study aims to determine whether there is a relationship between fibromyalgia (FM) disease and depression, anxiety, anxiety sensitivity, fear-avoidance beliefs, and quality of life in female patients with a diagnosis of fibromyalgia. 37 female patients followed up with FM diagnosis in pain medicine clinic and a control group consisting of 37 healthy women were included in the study. Sociodemographic and Clinical Characteristics Data Form, Quality of Life Form, fear-avoidance beliefs questionnaire, Anxiety Sensitivity Index-3, Beck Anxiety Inventory, Beck Depression Inventory, and Visual Analogue Scale was applied to the participants. When the patients in the FM group were compared to the control group; Statistically lower scores in all Quality of Life Form subscales except emotional role difficulty and social functionality scores; statistically higher scores in both physical and work activity subscales in fear-avoidance beliefs questionnaire; statistically higher scores in cognitive symptoms subscale in Anxiety Sensitivity Index-3, Beck Anxiety Inventory, Beck Depression Inventory, and Visual Analogue Scale scores were found. In FM patients, it has been determined that anxiety, depression and perceived pain severity reduce social functionality and quality of life in areas such as mental health, physical function, and emotional role difficulties. It was determined that the functionality and quality of life of patients diagnosed with FM decreased in daily life. An important contribution of the study to the literature is that it shows that the behavior of avoiding activity due to pain-induced fear exacerbates the pain and even contributes to its chronicity. These results, which show the effects of anxiety, depression, anxiety sensitivity, and fear-avoidance behavior on the prognosis of the disease in FM patients, indicate that psychiatric evaluation and treatment in FM patients is an important factor that determines the functionality and quality of life.


Assuntos
Fibromialgia , Ansiedade/psicologia , Depressão/psicologia , Medo/psicologia , Feminino , Fibromialgia/psicologia , Humanos , Dor , Qualidade de Vida/psicologia , Inquéritos e Questionários
2.
Cancer Control ; 29: 10732748221132522, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36192670

RESUMO

OBJECTIVES: Breast cancer is the most common cancer among women in Taiwan, and treatment and coping with the disease become prominent features in a survivor's life. Here, we examined Taiwanese survivors' perceived causes of breast cancer, the influence of support networks on their perceptions, and the behavioral changes they made to prevent recurrences. METHODS: In this qualitative study, we used an explanatory approach involving semi-structured in-depth interviews based on grounded theory. We recruited (via physician referrals) 29 survivors aged ≥20 who had received their initial diagnosis at least 6 months earlier. RESULTS: Although the participants had made behavioral changes in many areas of their lives after diagnosis, most still believed that "stress and emotions" were the most crucial factor in causing cancer. They strongly emphasized reducing stress levels to prevent recurrences. However, when maintaining healthy behaviors became stressful, they chose to level off healthy lifestyles for the sake of their emotional well-being. They made career changes to improve their quality of life yet continued to experience a deep fear of recurrence. Adopting behavioral changes leading to healthy lifestyles and following regular follow-ups helped to reduce their anxiety concerning recurrence. CONCLUSION: The participants' behavioral changes were strongly associated with the perceived causes of cancer. Health-promotion programs aimed at breast cancer prevention should focus on participants' subjective perception of the cause of cancer.


Assuntos
Neoplasias da Mama , Sobreviventes de Câncer , Neoplasias da Mama/terapia , Sobreviventes de Câncer/psicologia , Feminino , Humanos , Qualidade de Vida/psicologia , Recidiva , Sobreviventes/psicologia , Taiwan/epidemiologia
3.
Comput Intell Neurosci ; 2022: 3829623, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36188700

RESUMO

Posttraumatic stress disorder (PTSD) is a mental disorder characterized by a delayed onset and long-lasting psychiatric disorder in an individual due to unusual threatening or catastrophic stressful events, characterized by repeated experiences of the situation, avoidant behaviors, emotional numbness, hypervigilance, and other mental symptoms. It seriously affects the occupational, psychological, and social functions of the human body, leads to a decrease in the quality of life, and brings a greater economic burden to the patients themselves, their families, and the society. It has attracted widespread attention worldwide. Due to social transformation and fierce competition, college students are increasingly exposed to various stressful or traumatic events, and PTSD is becoming more and more obvious. Therefore, this study took a university student as the research object, analyzed the risk factors of PTSD, and used the method of data mining to analyze the effectiveness of DBT therapy and completed the following work: (1) this paper introduces the research status of PTSD pathogenesis at home and abroad and expounds the treatment methods and research results of DBT. (2) The basic principle of BPNN is introduced, the weight and threshold of BPNN are screened by genetic algorithm, and the best weight and threshold after screening are given to BPNN. A GA-BP model is constructed to improve the learning quality of BPNN. (3) The optimal parameters of the model are selected through experiments, and the model is verified by the collected data. The results show that the model has superiority in evaluating the effectiveness of DBT therapy. Then, it was proved by experiments that DBT therapy has a good effect in the treatment of PTSD. Finally, the influencing factors of PTSD were analyzed one by one through the experimental results.


Assuntos
Transtornos de Estresse Pós-Traumáticos , China , Mineração de Dados , Análise Fatorial , Humanos , Qualidade de Vida/psicologia , Fatores de Risco , Transtornos de Estresse Pós-Traumáticos/diagnóstico , Transtornos de Estresse Pós-Traumáticos/psicologia , Transtornos de Estresse Pós-Traumáticos/terapia , Estudantes
4.
BMC Cancer ; 22(1): 1032, 2022 Oct 03.
Artigo em Inglês | MEDLINE | ID: mdl-36192719

RESUMO

BACKGROUND: Multiple myeloma (MM) is the third most common hematologic malignancy with increasing importance due to improving treatment strategies and long-term outcomes in an aging population. This study aims to analyse influencing factors on health-related quality of life (HRQoL), such as treatment strategies, participation in a clinical trial and patient characteristics like anxiety, depression, gender, and age. A better understanding of the individual factors in context with HRQoL could provide a helpful instrument for clinical decisions. METHODS: In this prospective observational study, the HRQoL of MM patients with different therapies (first-line and relapse) was quantified by standardized questionnaires (EORTC QLQ-C30 and -MY20) in the context of sociodemographic data, individual anxiety and depressiveness (PHQ-4), and a selected number of clinical parameters and symptoms at defined time-points before, during, and after therapy. RESULTS: In total, 70 patients were included in the study. The median age of the study cohort was 62 years. 44% were female and 56% were male patients. More than half of the patients were fully active with an ECOG 0. Global health status was significantly higher in patients with first-line treatment and even increased after start of therapy, while the pain level decreased. In contrast, patients with relapsed MM reported a decreasing global health status and increasing pain. Additionally, there was a higher global health status in less anxious/depressive patients. HRQoL decreased significantly after start of chemotherapy in the parameters body image, side effects of treatment, and cognitive functioning. Tandem stem-cell transplantation was not found to be a risk factor for higher impairment of HRQoL. Participation in a clinical study led to an improvement of most aspects of HRQoL. Among others, increased anxiety and depression, female gender, older age, impaired performance status, and recurrent disease can be early indicators for a reduced HRQoL. CONCLUSION: This study showed the importance of regular longitudinal assessments of patient reported outcomes (PROs) in routine clinical care. For the first time, to our knowledge, we were able to demonstrate a potential impact between participation in clinical trials and HRQoL. However, due to frequently restrictive inclusion criteria for clinical trials, these MM patients might not be directly comparable with patients treated within standard therapy concepts. Further studies are needed to clarify the relevance of this preliminary data in order to develop an individualized, patient-centred, therapy concept.


Assuntos
Mieloma Múltiplo , Qualidade de Vida , Idoso , Depressão/etiologia , Depressão/terapia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Mieloma Múltiplo/psicologia , Mieloma Múltiplo/terapia , Recidiva Local de Neoplasia , Dor , Qualidade de Vida/psicologia , Inquéritos e Questionários
5.
Comput Math Methods Med ; 2022: 5792312, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36105242

RESUMO

Background: Colorectal cancer is one of the malignant tumors of the digestive system relatively hidden onset with unobvious early clinical symptoms. Most patients have developed into middle and late stages when they were diagnosed, missing the best period of operation. Advanced colorectal cancer has strong diffusion and metastasis with short survival time, which seriously threatens the life safety of patients. Objective: To investigate the mental health status and quality of life and the relationship between them in patients with permanent stoma of colorectal cancer. Methods: In this study, a case-control study was conducted to select 80 patients (stoma group) with colorectal cancer treated by permanent stoma surgery in our hospital from January 2020 to June 2021 and 80 patients (control group) with colorectal cancer treated by sphincter-preserving surgery at the same time. The psychological health degree and quality of life of the two groups of patients were evaluated by the psychological resilience scale (CD-RISC), the positive psychological capital questionnaire (PPQ), and the cancer patient quality of life-specific scale (QOL-LC), and a linear correlation model was used to analyze the correlation of CD-RISC score, PPQ score, and QOL-LC score. Results: The total scores of tenacity, optimism, self-improvement, and resilience of the patients in the stoma group were significantly lower than those in the control one, and the difference between them was statistically significant (P < 0.05); the four dimensions of self-efficacy, optimism, hope, and resilience and the total score of PPQ of patients in the stoma group were significantly lower than those in the control group, and all of the differences were statistically significant (P < 0.05); the somatic function, psychological function, symptoms of side effects, social function, and the total QOL-LC score of patients in the stoma one were significantly lower than those in the control one, and all of the differences were statistically significant (P < 0.05); the total QOL-LC score of patients in the stoma group showed a significant positive correlation with PPQ score and CD-RISC score (r = 0.511 and r = 0.608, P < 0.01). Conclusion: The overall level of mental health and life quality of patients with permanent stoma of colorectal cancer was worse than that of patients without stoma measures, and there was a certain correlation between patients' mental health and quality of life.


Assuntos
Neoplasias Colorretais , Estomas Cirúrgicos , Estudos de Casos e Controles , Neoplasias Colorretais/cirurgia , Humanos , Qualidade de Vida/psicologia , Estomas Cirúrgicos/efeitos adversos , Inquéritos e Questionários
6.
Syst Rev ; 11(1): 200, 2022 Sep 12.
Artigo em Inglês | MEDLINE | ID: mdl-36096828

RESUMO

BACKGROUND: The support provided by people with the same condition, including inflammatory bowel diseases (IBD), has the potential to improve a range of psychosocial outcomes by allowing people with the disease to receive emotional support as well as to learn coping strategies from more experienced peers. The aim of this systematic review was to summarise the evidence on peer support interventions and their effectiveness on people with IBD. METHODS: Bibliographic databases, conference proceedings, grey literature, and clinical trial registers were searched from inception to November 2021. Comparative and single-arm studies that evaluated interventions that were solely or contained in part peer support, for people with IBD and/or their carers of any age and in any setting were included. Effectiveness was evaluated using outcomes relating to physical and psychosocial function, disease control and healthcare utilisation. Data for each outcome were tabulated and presented in a narrative synthesis. Study design specific tools were used to assess risk of bias. Study selection and risk of bias assessment were undertaken by two reviewers independently. RESULTS: Fourteen completed studies and five ongoing studies met the inclusion criteria. Substantial heterogeneity was observed in the studies in relation to the intervention type and peer support was usually part of a wider intervention. All but one study analysed the total effect of the intervention, so it was not possible to fully isolate the effect of the peer support alone. The appropriateness of outcomes and outcome measurement tools for the assessment of effects was a further key issue. As such, overall, no significant evidence of beneficial effects of peer support interventions on quality of life and other psychosocial outcomes was found. CONCLUSIONS: New randomised controlled trials designed to isolate the effects of peer support are needed to evaluate the (net) effects of peer support only. Agreement on the outcomes to be targeted, and the choice of reliable and validated measurement tools for standalone peer support interventions would provide a focus for further intervention design and evaluation. SYSTEMATIC REVIEW REGISTRATION: The protocol was accepted in the international prospective register of systematic reviews (PROSPERO CRD42020168817).


Assuntos
Cuidadores , Doenças Inflamatórias Intestinais , Cuidadores/psicologia , Doença Crônica , Humanos , Doenças Inflamatórias Intestinais/terapia , Qualidade de Vida/psicologia
7.
Lancet Healthy Longev ; 3(9): e628-e635, 2022 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-36102777

RESUMO

BACKGROUND: The clinical management of patients with relapsed or refractory multiple myeloma is challenging and there is a paucity of tools to help clinicians make more informed decisions for the most suitable treatment options. We aimed to investigate the clinical utility of the International Myeloma Working Group (IMWG) frailty score in the setting of relapsed or refractory multiple myeloma, by examining its ability to capture different patient-reported health-related quality of life profiles. METHODS: We did a cross-sectional analysis of a prospective observational study of patients with relapsed or refractory multiple myeloma in Italy and the UK (30 hospitals across northern, central, and southern Italy, and one hospital in London, UK). Inclusion criteria were age 18 years or older and patients who had received at least one previous line of therapy and no more than five lines. Participants were excluded if they had a psychiatric disorder or major cognitive dysfunction, or any grade 3 or higher adverse event within 2 weeks before study entry. On study initiation, physicians had to assess frailty according to the IMWG criteria, which included the Charlson Comorbidity Index, the Katz Activity of Daily Living, and the Lawton Instrumental Activities of Daily Living. Patients were asked to complete patient-reported outcome measures, including the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core30 (EORTC QLQ-C30) and its validated multiple myeloma module (QLQ-MY20). A multivariable linear regression model was used to assess the mean differences in health-related quality of life scores between frailty groups to account for key potential confounding factors. FINDINGS: Overall, between Nov 13, 2017, and Nov 15, 2021, 415 patients with relapsed or refractory multiple myeloma, with a median age of 69·8 years (IQR 62·8-75·2) were enrolled. The median time since diagnosis was 4·4 years (IQR 2·5-7·1) and most patients (351 [85%]) had received at least two previous lines of therapy. According to the IMWG frailty score, 200 (48%) were classified as fit, 112 (27%) were classified as intermediate-fit, and 103 (25%) patients were classified as frail. Each frailty group was associated with a distinct health-related quality of life profile, with most notable differences between fit and frail patients. The largest clinically meaningful adjusted differences between fit and frail patients by the EORTC QLQ-C30 questionnaire were observed for physical functioning (Δ=-19·0 [95% CI -25·6 to -12·5; p<0·0001), fatigue (Δ=16·7 [9·7 to 23·7]; p<0·0001), insomnia (Δ=13·4 [4·1 to 22·6]; p=0·0047), and dyspnoea (Δ=12·5 [4·6 to 20·4]; p=0·0021). The most prevalent clinically important symptom in the overall population was pain; however, its prevalence varied between IMWG frailty groups at 70·9% in frail patients, 55·9% in intermediate-fit patients, and 50·5% in fit patients. INTERPRETATION: Our findings show the clinical utility of the IMWG frailty score in the setting of relapsed or refractory multiple myeloma, in helping to distinguish between groups of patients with distinct health-related quality of life profiles. Further research is needed to examine the value of patient-reported outcome data in improving assessment of frailty in the setting of relapsed or refractory multiple myeloma. FUNDING: Fondazione GIMEMA Franco Mandelli Onlus and Amgen.


Assuntos
Fragilidade , Mieloma Múltiplo , Atividades Cotidianas , Adolescente , Idoso , Estudos Transversais , Fragilidade/diagnóstico , Avaliação Geriátrica , Humanos , Pessoa de Meia-Idade , Mieloma Múltiplo/epidemiologia , Qualidade de Vida/psicologia , Reino Unido/epidemiologia
8.
Front Public Health ; 10: 952585, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36091545

RESUMO

Purpose: Epilepsy is one of the most common neurological disorders with high costs for the healthcare systems and great suffering for patients. Beyond seizures, psychosocial comorbidities can have detrimental effects on the well-being of people with epilepsy. One source of social stress and reduced quality of life is epilepsy-related stigma that often occurs, e.g., due to public misconceptions or myths. Stigma has individual biological, psychological and social correlates. Moreover, environmental factors like living in remote areas are associated with stigma. However, little is known about the link between the social structure of the residence and stigma in epilepsy. Thus, we investigated the association between the structural socioeconomic status (SES) and perceived stigma in an urban epilepsy population. Methods: This prospective, cross-sectional study examined 226 adult in-patients with epilepsy from Berlin. Multiple regression analyses were performed to check the relationship between structural SES and stigma controlling for individual-level demographic, clinical, psychological and social factors. Continuous social indices (SI) of the districts and neighborhoods ("SI district" and "SI neighborhood") of Berlin were used to measure different levels of structural SES. Non-linear relationships are tested by grouping the SI in quartiles. Results: Both indicators of structural SES were independently linked to stigma (p = 0.002). For "SI district", we identified a non-linear relationship with patients from the most deprived quartile feeling less stigmatized compared to those in the second (p < 0.001) or least deprived quartile (p = 0.009). Furthermore, more restrictions of daily life (p < 0.001), unfavorable income (p = 0.009) and seizure freedom in the past 6 months (p = 0.05) were related to increased stigma. A lower "SI neighborhood" was associated with higher stigma (p = 0.002). Conclusion: Strategies to reduce epilepsy-related stigma need to consider the sociostructural living environment on different regional levels. Unfavorable relations with the immediate living environment may be directly targeted in patient-centered interventions. Non-linear associations with the structural SES of broader regional levels should be considered in public education programs. Further research is needed to examine possible underlying mechanisms and gain insight into the generalizability of our findings to other populations.


Assuntos
Epilepsia , Qualidade de Vida , Adulto , Estudos Transversais , Epilepsia/epidemiologia , Epilepsia/psicologia , Humanos , Estudos Prospectivos , Qualidade de Vida/psicologia , Classe Social
9.
Nutrients ; 14(17)2022 Aug 29.
Artigo em Inglês | MEDLINE | ID: mdl-36079816

RESUMO

Lifestyle interventions can have a positive impact on quality of life and psychological parameters in patients with metabolic syndrome (MetS). In this randomized controlled trial, 145 participants with MetS (62.8% women; 59.7 ± 9.3 years) were randomized to (1) 5-day fasting followed by 10 weeks of lifestyle modification (F + LM; modified DASH diet, exercise, mindfulness; n = 73) or (2) 10 weeks of lifestyle modification only (LM; n = 72). Outcomes were assessed at weeks 0, 1, 12, and 24, and included quality of life (Short-Form 36 Health Survey Questionnaire, SF-36), anxiety/depression (Hospital Anxiety and Depression Scale, HADS), stress (Cohen Perceived Stress Scale, CPSS), mood (Profile of Mood States, POMS), self-efficacy (General Self-Efficacy Scale, GSE), mindfulness (Mindfulness Attention Awareness Scale, MAAS), and self-compassion (Self-Compassion Scale, SCS). At week 1, POMS depression and fatigue scores were significantly lower in F + LM compared to LM. At week 12, most self-report outcomes improved in both groups-only POMS vigor was significantly higher in F + LM than in LM. Most of the beneficial effects within the groups persisted at week 24. Fasting can induce mood-modulating effects in the short term. LM induced several positive effects on quality of life and psychological parameters in patients with MetS.


Assuntos
Síndrome Metabólica , Qualidade de Vida , Depressão/psicologia , Depressão/terapia , Jejum , Feminino , Humanos , Estilo de Vida , Masculino , Síndrome Metabólica/terapia , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida/psicologia
10.
J Psychiatr Pract ; 28(5): 362-372, 2022 Sep 01.
Artigo em Inglês | MEDLINE | ID: mdl-36074105

RESUMO

OBJECTIVE: The aim was to conduct a follow-up study of the quality of life (QoL) and to measure lifestyle factors among the aging survivors of a petrochemical gas explosion in Taiwan 5 years after the event. METHODS: A community-based survey with cross-sectional assessments was conducted with residents of a community who experienced a petrochemical gas explosion 5 years after the disaster. Short Form 12v2 (SF-12v2) was used to survey a representative sample of participants. RESULTS: The risk factors for different QoL subscales were stressors and chronic physical illness, and the protective factors were higher income and better diet and exercise habits. The elderly participants had better diet and exercise habits than the younger participants in this survey. Aging had a negative impact on the physical QoL subscales [physical functioning (PF), bodily pain (BP), general health (GH), Physical Component Summary (PCS)] but a positive impact on psychological QoL subscales [vitality (VT), social functioning (SF), emotional problems (RE), mental health (MH), Mental Health Component Summary (MCS)]. CONCLUSIONS: While participants' psychiatric status had improved after 5 years, their QoL continued to be affected, especially in those with stress and physical illness. The elderly groups maintained a relatively acceptable QoL in terms of psychological aspects. Postdisaster treatment and follow-up should be addressed to a greater degree, especially in victims with mental illness or chronic illness and those with fewer socioeconomic resources.


Assuntos
Explosões , Qualidade de Vida , Idoso , Estudos Transversais , Seguimentos , Humanos , Qualidade de Vida/psicologia , Inquéritos e Questionários
11.
Orphanet J Rare Dis ; 17(1): 334, 2022 09 02.
Artigo em Inglês | MEDLINE | ID: mdl-36056400

RESUMO

BACKGROUND: Children with neurodegenerative conditions (CNDC) often suffer from severe neurodisability and high symptom burden with multisystemic involvement. However, their symptom burden and health-related quality of life (HRQOL) is not systematically documented in the literature, and there is no existing tool for such purposes. We designed our own tool for scoring of symptom burden amongst CNDCs and adopted the PedsQL generic score 4.0 to quantify the impact of overall symptom burden on children's overall HRQOL. METHODS: The Symptom Profile for children with neurodegnerative condition (SProND) questionnaire was developed, which consisted of 14 questions grouped according to 5 categories, namely epilepsy, neurobehavioural, movement and mobility related, breathing and swallowing, and other daily activities. CNDCs were recruited during visits to the Comprehensive Neurometabolic / Neurodegenerative Program of the Duchess of Kent Children's Hospital and Hong Kong Children's Hospital between November 2019 and March 2020. The SProND and PedsQL 4.0 Generic Core Scales were distributed to consenting parents of CNDCs. RESULTS: 36 CNDCs were recruited and matched with community controls. The response rate of subject and control were 99.5% and 98.7% respectively. The Cronbach alpha was 0.61 for the neurobehavioural domain and > = 0.7 for other domains. The greater number of symptoms each subject experiences, the worse his/ her PedsQL scores. Subjects displaying hypersalivation and swallowing difficulties had average physical health summary scores of less than 30% compared with subjects without these symptoms. On the other hand, average psychosocial health summary scores of subjects with involuntary movements, joint stiffness, hypersalivation, sleep problem and anorexia were approximately 70% compared to subjects without these symptoms. DISCUSSION AND CONCLUSION: This is one of the first studies to look at CNDCs as a group. We propose the SProND questionnaire for evaluation of symptom profile amongst CNDCs with satisfactory internal and external validity. It demonstrates how physical symptoms impact both physical and psychosocial HRQOL, and the cumulative effect of individual symptoms on the overall HRQOL. As such, CNDCs should be systematically screened for multi-systemic symptoms as a routine part of their clinical care, and care plans should be individually catered to individual patients' symptom burden and specific needs.


Assuntos
Doenças Neurodegenerativas , Sialorreia , Criança , Feminino , Humanos , Pais/psicologia , Qualidade de Vida/psicologia , Inquéritos e Questionários
12.
Orphanet J Rare Dis ; 17(1): 329, 2022 09 02.
Artigo em Inglês | MEDLINE | ID: mdl-36056437

RESUMO

BACKGROUND: Metachromatic leukodystrophy (MLD) is an autosomal recessive lysosomal disorder caused by mutations in the arylsulfatase A gene. Until now, there has been little information on the burden of MLD on patients and their caregivers. This multinational study aims to quantify caregiver-related impacts of MLD across several key domains including symptoms, treatment burden, time investment, social and emotional well-being, and professional and financial impact. RESULTS: Data were collected through moderator-assisted web survey and telephone interviews. The survey was developed with extensive input from clinical experts and MLD patient advocacy groups. The EQ-5D-5L questionnaire was administered during follow-up interviews. The total sample consisted of parents of MLD patients in the US (n = 10), France (n = 10), Germany (n = 6), UK (n = 5), Belgium (n = 1), and Norway (n = 2). The impact of MLD is evident from the EQ-5D-5L scores, which indicate utility values for caregivers below respective national population norms and a higher proportion of caregivers reporting problems with anxiety/depression. Time involved for care was demonstrated by a mean of 4.1 inpatient and 29.6 outpatient hospital visits in the previous 12-month period. These commitments place stress on familial relationships with 50% of caregivers reporting their child's MLD diagnosis had negatively impacted their relationship with their spouse/partner. Professionally, 76.5% of caregivers stopped working or switched to part-time employment following their child's MLD diagnosis, and most acknowledged caring for their child had affected their potential for career progression or promotion. Differences are also observed based on late infantile versus juvenile onset MLD, time since diagnosis, and for transplanted patients versus those who received palliative care only. CONCLUSIONS: This multinational study demonstrates that MLD consistently negatively affects many aspects of caregivers' lives including health, relationships, and professional status, irrespective of location. We expect that the results of this study are generalizable to other countries. This study enhances our understanding of MLD caregiver impacts, which could improve patient care and assist in identifying support for individuals with MLD and their families.


Assuntos
Leucodistrofia Metacromática , Qualidade de Vida , Cuidadores , Criança , Família , Humanos , Leucodistrofia Metacromática/genética , Qualidade de Vida/psicologia , Inquéritos e Questionários
13.
BMC Geriatr ; 22(1): 732, 2022 09 05.
Artigo em Inglês | MEDLINE | ID: mdl-36064353

RESUMO

INTRODUCTION: Most cancers occur in older individuals, who are more vulnerable due to functional impairment, multiple comorbidities, cognitive impairment, and lack of socio-familial support. These can undermine patients' sense of dignity. This study seeks to compare dignity scores in older patients with advanced cancer on sociodemographic and clinical variables and analyze the predictive value of anxiety, depression, functional limitations, and social support on dignity scores. METHODS: A prospective, multicenter, observational study conducted with participation of 15 hospitals in Spain from February 2020 to October 2021. Patients with newly-diagnosed, advanced cancer completed the dignity (PPDS), anxiety and depression (BSI), Social Support (Duke-UNC-11), and functional limitations (EORTC-C30) scales. Lineal regression analyses explored the effects of anxiety, depression, functional status, and social support on dignity, adjusting for sociodemographic and clinical variables. RESULTS: A total of 180 subjects participated in this study. The results of the correlation analysis revealed that dignity correlated negatively with anxiety, depression, and sex, and positively with social support, functional status, and longer estimated survival. Thus, women, and more anxious and depressed individuals scored lower on the dignity scale, whereas patients with more social support, fewer functional limitations, and longer estimated survival scored higher. CONCLUSION: In conclusion, being female, having a lower educational level, lower estimated survival, depression, anxiety, less social support, and limited functionality are correlated with less dignity in the elderly with advanced cancer. It is a priority to manage both physical and psychological symptoms in patients with unresectable advanced cancer to mitigate psychological distress and increase their sense of dignity.


Assuntos
Neoplasias , Respeito , Idoso , Ansiedade/psicologia , Depressão/diagnóstico , Depressão/epidemiologia , Depressão/psicologia , Feminino , Humanos , Masculino , Neoplasias/epidemiologia , Neoplasias/psicologia , Estudos Prospectivos , Qualidade de Vida/psicologia , Inquéritos e Questionários
14.
BMC Psychiatry ; 22(1): 591, 2022 09 05.
Artigo em Inglês | MEDLINE | ID: mdl-36064377

RESUMO

BACKGROUND: Systemic Lupus Erythematosus (SLE) is an autoimmune disease that affects multiple systems and increases the risk of mental disorders such as depression and anxiety. We conducted an observational, single-center, cross-sectional study to investigate the relationship between depression, anxiety, and SLE disease activity. METHODS: The Patient Health Questionnaire 9 (PHQ-9) was used to assess depression, and the 7-item Generalized Anxiety Disorders Scale was used to assess anxiety (GAD-7). Using the chi-square/exact Fisher's tests, socio-demographic data, clinical and other characteristics of SLE patients were compared between depression or anxiety and non-depression/non-anxiety groups. To identify optimal levels of Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) for predicting depression or anxiety, receiver-operator curves (ROC) were drawn. RESULTS: Among the 325 patients involved in this study, patients with depression or anxiety had significantly higher SLE activity (p < 0.001), and more frequent musculoskeletal (p < 0.05) and neuropsychiatric symptoms (p < 0.05). Depression and anxiety are more common in the moderate-severe active group than in the inactive-mild active group (depression: OR 3.350, 95%CI 2.015, 5.570, p < 0.001; anxiety: OR 4.085, 95%CI 2.493, 6.692, p < 0.001). The optimal SLEDAI cutoff value of 8.5 predicted depression with a sensitivity of 50.5% and a specificity of 78.4% (AUC 0.660, p < 0.001) and anxiety with a sensitivity of 54.2% and a specificity of 78.4% (AUC 0.684, p < 0.001). CONCLUSION: SLE disease activity is positively associated with the severity of depression and anxiety. Those patients whose SLEDAI scores are greater than 8.5 are more likely to suffer from mental disorders which require additional attention to them.


Assuntos
Lúpus Eritematoso Sistêmico , Qualidade de Vida , Ansiedade/psicologia , Transtornos de Ansiedade/complicações , Transtornos de Ansiedade/diagnóstico , Estudos Transversais , Humanos , Lúpus Eritematoso Sistêmico/complicações , Qualidade de Vida/psicologia , Índice de Gravidade de Doença
15.
Oncol Nurs Forum ; 49(5): 445-453, 2022 08 18.
Artigo em Inglês | MEDLINE | ID: mdl-36067244

RESUMO

OBJECTIVES: Hematologic malignancies (HMs) are life-threatening cancers that frequently entail aggressive, long, inpatient treatment protocols. This can result in numerous concurrent symptoms and decreased quality of life for patients and can affect family caregivers (FCs). This study examined the impact of an HM diagnosis on patients and on their FCs. SAMPLE & SETTING: A descriptive design was used to explore the experiences of 28 newly diagnosed patients and their FCs. All patients were receiving treatment on an inpatient acute oncology unit at a National Cancer Institute-designated cancer center. METHODS & VARIABLES: Semistructured, separate interviews with patients and FCs were recorded and transcribed verbatim. Textual and content analyses were conducted to generate common themes. RESULTS: Patients and FCs reported how diagnosis and treatment affected them physically, emotionally, logistically, and financially. They described the effects of their experiences with the health system and providers in areas such as diagnostic process, trust in the medical team, support needs, and hospitalization. IMPLICATIONS FOR NURSING: Understanding the parallel experiences of patients with HMs and their designated FCs allows researchers to develop targeted interventions and enables clinicians to provide personalized patient- and family-centered care.


Assuntos
Neoplasias Hematológicas , Neoplasias , Monofosfato de Adenosina , Cuidadores/psicologia , Família/psicologia , Neoplasias Hematológicas/diagnóstico , Neoplasias Hematológicas/terapia , Humanos , Neoplasias/psicologia , Cuidados Paliativos/psicologia , Qualidade de Vida/psicologia
16.
Oncol Nurs Forum ; 49(5): 433-443, 2022 08 18.
Artigo em Inglês | MEDLINE | ID: mdl-36067243

RESUMO

OBJECTIVES: Patients with advanced cancer and minor children experience high rates of depression and anxiety. However, associations between parental status and other aspects of the patient experience are not well understood. This study compared patient-reported outcomes of patients with and without minor children. SAMPLE & SETTING: This was a retrospective analysis of 448 adults with stage III or IV solid tumors from a public research registry. METHODS & VARIABLES: Multiple linear regression models or modified Poisson regression models were fitted to evaluate differences in health-related quality of life, global health, and patient satisfaction scores between patients living with and without minors. RESULTS: One in five patients lived with minor children. They reported significantly worse health-related quality of life, global physical health, and global mental health. They also expressed lower satisfaction with time spent with their provider, communication, and financial aspects. IMPLICATIONS FOR NURSING: Patients with minor children may benefit from earlier identification and support for their psychosocial needs and concerns.


Assuntos
Neoplasias , Qualidade de Vida , Monofosfato de Adenosina , Adulto , Criança , Humanos , Neoplasias/psicologia , Satisfação do Paciente , Satisfação Pessoal , Qualidade de Vida/psicologia , Estudos Retrospectivos
17.
Oncol Nurs Forum ; 49(5): 455-460, 2022 08 18.
Artigo em Inglês | MEDLINE | ID: mdl-36067245

RESUMO

OBJECTIVES: To evaluate preliminary efficacy, fidelity, and integrity of data collection of a nurse-led, telemedicine-delivered video visit intervention aimed at improving management of rural survivors' cancer-related distress symptoms. SAMPLE & SETTING: 21 rural survivors participated in a nurse-led telemedicine intervention delivered six weeks after the end of active cancer treatment. METHODS & VARIABLES: Participants' symptom management was measured with the Short Form Survivor Unmet Needs Survey, a four-factor, 30-item instrument that measures the unmet needs of adult survivors. Data were collected preintervention and six weeks postintervention. RESULTS: The mean difference between pre- and postintervention survey scores was -0.24, representing an overall improvement in management of unmet needs. The unmet emotional needs domain had the highest mean preintervention score and the largest mean reduction. All effect sizes were small. IMPLICATIONS FOR NURSING: A nurse-led, telemedicine-delivered video visit intervention may improve rural survivors' symptom management during early survivorship. Comparison with a control group using a sample size powered to detect clinically meaningful differences is an important next step to fully evaluate the impact of this model of care.


Assuntos
Neoplasias , Telemedicina , Monofosfato de Adenosina , Adulto , Humanos , Neoplasias/terapia , Qualidade de Vida/psicologia , População Rural , Sobreviventes/psicologia , Telemedicina/métodos
18.
Health Qual Life Outcomes ; 20(1): 129, 2022 Sep 01.
Artigo em Inglês | MEDLINE | ID: mdl-36050766

RESUMO

INTRODUCTION: To make efficient use of available resources, decision-makers in healthcare may assess the costs and (health) benefits of health interventions. For interventions aimed at improving mental health capturing the full health benefits is an important challenge. The Mental Health Quality of Life (MHQoL) instrument was recently developed to meet this challenge. Evaluating the pyschometric properties of this instrument in different contexts remains important. METHODS: A psychometric evaluation of the MHQoL was performed using existing international, cross-sectional data with 7155 respondents from seven European countries (Denmark, France, Germany, Italy, Portugal, The Netherlands, Portugal and the United Kingdom). Reliability was examined by calculating Cronbach's alpha, a measure of internal consistency of the seven MHQoL dimensions, and by examining the association of the MHQoL sum scores with the MHQoL-VAS scores. Construct validity was examined by calculating Spearman's rank correlation coefficients between the MHQoL sum scores and EQ-5D index scores, EQ-VAS scores, EQ-5D anxiety/depression dimension scores, ICECAP-A index scores and PHQ-4 sum scores. RESULTS: The MHQoL was found to have good internal consistency for all seven countries. The MHQoL sum score and the MHQoL-VAS had a high correlation. Spearman's rank correlation coefficients were moderate to very high for all outcomes. CONCLUSION: Our results, based on data gathered in seven European countries, suggest that the MHQoL shows favourable psychometrical characteristics. While further validation remains important, the MHQoL may be a useful instrument in measuring mental health-related quality of life in the Western European context.


Assuntos
Saúde Mental , Qualidade de Vida , Estudos Transversais , Humanos , Psicometria , Qualidade de Vida/psicologia , Reprodutibilidade dos Testes , Inquéritos e Questionários
19.
Comput Math Methods Med ; 2022: 6206851, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36051001

RESUMO

Objective: To study the effects of psychological nursing intervention on anxiety, depression, and life events in puerperal women with fetal abnormalities. Methods: From January 2020 to January 2022, eighty women with abnormal fetal induction and puerperium-treated were selected in our hospital as the subjects. The research group (n = 40) and control group (n = 40) were arbitrarily selected from 80 women with abnormal fetal induction and puerperium. The research group was given psychological nursing intervention based on routine nursing, and the control cases were given routine nursing. The scores of Generalized Anxiety Scale (GAD-7), Patient Health Questionnaire (PHQ-9), Event Impact Scale (IES-R), Life Events Scale (LES), and Newcastle Nursing Satisfaction Scale (NSNS) were studied before nursing and 4 weeks after discharge. Results: Four weeks after discharge, the score of GAD-7 in the research group was lower, and the difference was statistically significant (P < 0.05). The score of PHQ-9 in the research group was lower, and the difference was statistically significant (P < 0.05). The IES-R score of the research group was lower, and the difference was statistically significant (P < 0.05). The LES score of the research group was lower, and the difference was statistically significant (P < 0.05). And the NSNS score of the research group was higher, and the difference was statistically significant (P < 0.05). Conclusion: The value of psychological care interventions in women with abnormally induced labor is more remarkable, contributing to the reduction of anxiety and depression and increasing the satisfaction of care for women with abnormally induced labor.


Assuntos
Ansiedade , Depressão , Feminino , Feto , Humanos , Trabalho de Parto Induzido , Período Pós-Parto , Gravidez , Qualidade de Vida/psicologia
20.
Nephrol Nurs J ; 49(4): 335-381, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36054806

RESUMO

Studies have found that yoga may be beneficial to patients with chronic diseases by improving physical functioning, cardiovascular risk factors, and mood disorders. To date, minimal research has been conducted on the benefits of yoga in patients on chronic hemodialysis. Yoga utilizes postures, breathing, and meditation to help focus the mind and engage the body in low-to-moderate physical activity. The purpose of this pilot study was to determine the feasibility of conducting a chair yoga study and compare the effects of a four-week chair yoga intervention on psychological and physiological outcomes in a sample of 31 patients on chronic hemodialysis. At study completion, the chair yoga group had significantly lower depression and anxiety scores, and diastolic blood pressure than the standard care group. This study demonstrated the difficulty in recruiting participants for yoga studies. Future studies with larger sample sizes and over longer durations of time should be conducted to further validate findings. In addition, further exploration of interventions to promote motivation in this population to participate in similar low-intensity exercises needs to be conducted.


Assuntos
Meditação , Yoga , Humanos , Projetos Piloto , Qualidade de Vida/psicologia , Diálise Renal , Yoga/psicologia
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