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1.
Diabet Med ; 41(3): e15219, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37660355

RESUMO

AIM: To better understand the prevalence of self-reported psychosocial burdens and the unmet needs identified by people with diabetes in relation to routine diabetes visits. METHODS: An English language, online survey was distributed via social media, key stakeholder networks, charity and advocacy groups to adults with type 1 diabetes or type 2 diabetes. Survey items were designed by members of the FDA RESCUE Collaborative Community Governing Committee prior to pilot testing with potential participants. Descriptive statistical analyses were conducted, as well as thematic analyses on free-text responses using NVivo v14. RESULTS: Four hundred and seventy-eight participants completed the survey: 373 (78%) had type 1 diabetes, 346 (73%) identified as a woman and 433 (91%) were white. Most participants had experienced self-reported (rather than diagnosed) anxiety and depression (n = 323 and n = 313, respectively), as well as fear of low blood sugars (n = 294), low mood (n = 290) and diabetes-related distress (n = 257). Sixty-eight percent reported that diabetes had negatively affected self-esteem, 62% reported the feelings of loneliness, but 93% reported that friends/family/work colleagues were supportive when needed. Two hundred and seventy-two percent (57%) reported that their diabetes team had never raised the topic of mental health. The overwhelming majority stated that the best thing their diabetes team could do to help was to simply ask about mental well-being, listen with empathy and without judgement, and practice skills to understand psychosocial issues in diabetes. CONCLUSION: Integrating psychosocial discussions and support within routine healthcare visits is crucial to improve outcomes for people with diabetes. Such a biopsychosocial model of healthcare has long been advocated by regulatory bodies.


Assuntos
Diabetes Mellitus Tipo 1 , Diabetes Mellitus Tipo 2 , Adulto , Feminino , Humanos , Diabetes Mellitus Tipo 1/epidemiologia , Diabetes Mellitus Tipo 1/psicologia , Diabetes Mellitus Tipo 2/epidemiologia , Diabetes Mellitus Tipo 2/terapia , Emoções , Ansiedade/epidemiologia
2.
Telemed J E Health ; 30(4): 919-939, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38010739

RESUMO

Background: e-Health refers to any health care service delivered through the internet or related technologies, to improve quality of life. Despite the increasing use of e-health interventions to manage type 2 diabetes (T2D), there is a lack of evidence about the effectiveness on diabetes distress and depression, which are common issues in those living with T2D. Purpose: To synthesize and determine the effects of e-health interventions on diabetes distress and depression among patients with T2D. Methods: We systematically searched PubMed, Scopus, Cochrane CENTRAL, and Web of Science for randomized controlled trials (RCTs), non-RCTs and observational cohort studies for the effects of e-health interventions on diabetes distress and depression in patients with T2D up to September 14, 2022. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2020 recommendations were followed. The risk of bias was assessed according to the Risk-of-Bias 2 tool (RCTs), the Risk Of Bias In Non-randomised Studies-of Interventions (ROBINS-I) (non-RCTs) and the National Institute of Health tool (observational). The standardized mean difference (SMD) and its related 95% confidence intervals (CIs) were estimated with the DerSimonian-Laird method through random-effect models. A pooled raw mean difference (MD) meta-analysis was conducted for RCTs comparing the effects of e-health versus control on diabetes distress screening to display the clinical impact. Results: A total of 41 studies (24 RCTs, 14 non-RCTs, and 3 observational) involving 8,667 individuals were included. The pooled SMD for the effect of e-health versus the control group on diabetes distress was -0.14 (95% CI = -0.24 to -0.04; I2 = 23.9%; n = 10 studies), being -0.06 (95% CI = -0.15 to 0.02; I2 = 7.8%; n = 16 studies) for depression. The pooled raw MD on diabetes distress screening showed a reduction of -0.54 points (95% CI = -0.81 to -0.27; I2 = 85.1%; n = 7 studies). Conclusion: e-Health interventions are effective in diminishing diabetes distress among adults with T2D, inducing clinically meaningful reductions.


Assuntos
Diabetes Mellitus Tipo 2 , Telemedicina , Adulto , Humanos , Depressão/prevenção & controle , Diabetes Mellitus Tipo 2/complicações , Diabetes Mellitus Tipo 2/terapia , Qualidade de Vida , Pacientes , Telemedicina/métodos
3.
Reprod Biomed Online ; 46(2): 399-409, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36463078

RESUMO

RESEARCH QUESTION: What are the emotional effects of infertility on patients, partners, or both, and how can qualitative thematic analyses and natural language processing (NLP) help evaluate textual data? DESIGN: A cross-sectional, multi-country survey conducted between March 2019 and May 2019. A total of 1944 patients, partners, or both, from nine countries responded to the open-ended question asking about their initial feelings related to an infertility diagnosis. A mixed-method approach that integrated NLP topic modelling and thematic analyses was used to analyse responses. Sentiment polarity was quantified for each response. Linear regression evaluated the association between patient characteristics and sentiment negativity. RESULTS: Common emotional reactions to infertility diagnoses were sadness, depression, stress, disappointment, anxiety, frustration, confusion and loss of self-confidence. NLP topic modelling found additional reactions, i.e. shared feelings with partners, recollections about causes of infertility and treatment experience. Responses to the open-ended question were brief (median: three words) with 71.8% conveying negative sentiments. Some respondent characteristics showed small but significant associations with sentiment negativity, i.e. country (Spain, China and France were more negative than the USA, P < 0.001, P < 0.003 and P < 0.009 respectively), treatment engagement (no treatment was more negative than one or more treatment, P = 0.027) and marital status (missing/other was more negative than divorced, P = 0.003). CONCLUSION: Infertility diagnoses create an emotional burden for patients and partners. The mixed-method approach provides a compelling synergy in support of the validity of these findings and shows potential for these techniques in future research.


Assuntos
Infertilidade , Processamento de Linguagem Natural , Humanos , Estudos Transversais , Estresse Psicológico/psicologia , Infertilidade/diagnóstico , Infertilidade/terapia , Infertilidade/psicologia , Inquéritos e Questionários
4.
Geriatr Nurs ; 42(2): 379-385, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33621781

RESUMO

The aim of this cross-sectional survey was to characterize the role of and burden on caregivers of heart failure (HF) patients in Japan, since such data are limited at present. Data from 126 caregivers whose average age was 63.5 years were analyzed. Helping to prepare meals/cooking was the most frequently reported activity (47% of caregivers); 24% found this the most burdensome. The most frequently reported physical consequence of caregiving was feeling physically tired (44%); emotionally worrying about the patient (62%) was the most frequent psychological consequence. Approximately half of the caregivers reported that caring for patients impacted their lifestyle. Although 40% of caregivers asked questions to physicians regarding diet or lifestyle modifications, 19% did not ask any. Caregivers play a crucial role in the management of HF patients in Japan but experience physical and emotional burden. Solutions are required to reduce the caregiver burden associated with HF.


Assuntos
Cuidadores , Insuficiência Cardíaca , Estudos Transversais , Humanos , Japão , Qualidade de Vida , Inquéritos e Questionários
5.
Epilepsy Behav ; 112: 107374, 2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-32882626

RESUMO

OBJECTIVE: Status epilepticus (SE) is a life-threatening neurological emergency with the potential for wide-ranging impact on patients and caregivers. In this study, the burden of disease in patients with a history of SE and their caregivers was assessed. METHODS: Adult patients as well as caregivers of children, adolescents, and adults who had experienced ≥1 SE event in the past 24 months completed an online survey. Functional, social, emotional, and economic burden in patients and caregivers was assessed. Burden was measured through concept-targeted questionnaires, including the US Centers for Disease Control and Prevention (CDC) Health-Related Quality of Life 4 (HRQoL-4) and the Work Productivity and Activity Impairment (WPAI) instruments. RESULTS: The 198 respondents comprised 49 adult patients, 51 caregivers of children, 47 caregivers of adolescents, and 51 caregivers of adults. Most patients (93.9%) were diagnosed with epilepsy. Patients' daily activities were highly affected, and many respondents reported a substantial long-term physical and mental impact on patients. The mean CDC HRQoL-4 score for unhealthy days per month ranged from 11.1 for caregivers of adults to 16.9 for caregivers of children. WPAI scores demonstrated a substantial impact on the ability of adult patients and all caregivers to work. Among respondents, caregivers of children reported the highest absenteeism from work (20%) and the lowest employment rate (33%). Proportions of caregivers reporting that their daily social life was impacted at least 'some of the time' ranged from 80% to 92%, with nearly half (47%) of caregivers of children responding that their social life was impacted 'all the time'. CONCLUSIONS: Status epilepticus episodes place a high burden on patients and caregivers. Notably, the burden appeared high across a variety of domains. This study highlights that the burden of disease is pronounced and wide-reaching and goes beyond the immediate physical and medical impact of an SE episode.


Assuntos
Efeitos Psicossociais da Doença , Estado Epiléptico , Adolescente , Adulto , Cuidadores , Criança , Estudos Transversais , Emprego , Humanos , Qualidade de Vida , Estado Epiléptico/epidemiologia , Inquéritos e Questionários
6.
Qual Life Res ; 29(5): 1301-1310, 2020 May.
Artigo em Inglês | MEDLINE | ID: mdl-31900762

RESUMO

PURPOSE: To assess the association of back pain and treatment-seeking behavior for such pain with work-related emotional burden (regret about care), regret coping strategies, and physical burden among newly practicing nurses. METHODS: We used data from the Impact of Care-related Regret Upon Sleep (ICARUS) cohort collected between 05.2017 and 07.2018 using web-based surveys (weekly for measures of emotional burden, physical burden and coping strategies, and monthly for back pain and seeking care). We investigated immediate associations and temporal influences between burdens and back pain with linear mixed models and cross-lagged Bayesian models, respectively. Coefficients were standardized to allow comparison between burdens. Logistic regression was used to examine the association of burdens with seeking care. RESULTS: Among 105 nurses with an average follow-up of 3 months, 80 reported at least one episode of back pain. Neither physical nor emotional burdens had an immediate association with back pain. However, number of days with back pain in a given month was associated with an increase in both burdens during the previous month, with similar degrees of association (emotional: b = 0.24, physical: b = 0.21). Decision to seek treatment was associated with an increase in back pain frequency (OR 1.12, p = 0.04) and intensity (OR 1.80, p = 0.002) and a decrease in emotional burden (OR 0.95, p = 0.03). Coping strategies were associated neither with the occurrence of back pain nor with care-seeking. CONCLUSION: While both emotional and physical burdens were associated with increased frequency of back pain the following month, emotional burden additionally showed a negative association with the decision to seek care.


Assuntos
Adaptação Psicológica , Dor nas Costas/patologia , Dor nas Costas/psicologia , Emoções , Enfermeiras e Enfermeiros/psicologia , Adulto , Teorema de Bayes , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde , Qualidade de Vida/psicologia , Sono , Inquéritos e Questionários
7.
BMC Palliat Care ; 19(1): 77, 2020 Jun 03.
Artigo em Inglês | MEDLINE | ID: mdl-32493301

RESUMO

BACKGROUND: Spirituality can give meaning to life, providing support and guidance in complex situations. Despite its importance in palliative care, the role of spirituality for family caregivers of patients under exclusive palliative care has not received enough attention in the literature. We aimed to address the correlation between spirituality and the emotional burden of family members of patients under exclusive palliative care. METHODS: This transversal study was conducted in a tertiary private teaching hospital, in São Paulo, Brazil. The study comprised family members of patients receiving palliative care exclusively. Only one caregiver who cared for the patient for at least 2 months was invited to participate. Family members answered the following questionnaires: WHOQOL spirituality, religiousness and personal beliefs (SRPB), Zarit Burden Interview (ZBI) and Self-Reporting Questionnaire (SRQ-20). They were excluded if patients were residing in a Long Stay Institution. Continuous variables were expressed by median and quartiles and analyzed with the Kruskal-Wallis test with Muller-Dunn post-test adjusted by Bonferroni or with the Mann-Whitney test for two groups. We used multivariable linear regression to identify independent predictors of caregiver burden. RESULTS: A total of 178 family members were interviewed in a median of 8 [4-13.25] days after patient admission. Almost 40% of families presented high score of burden. Faith and Meaning in Life were the facets that scored the highest, with a median of 4.50 [4.00-5.00] for both facets. There was an inverse correlation between Zarit score and all of the WHOQOL-SRPB facets, indicating that the lower the spirituality, the greater the emotional burden. Inner peace was the strongest protective factor associated with burden. CONCLUSIONS: Psycho-socio-spiritual interaction can improve the coping ability of family caregivers of patients under exclusive palliative care, addressing a critical gap in the provision of holistic palliative care services.


Assuntos
Cuidadores/psicologia , Efeitos Psicossociais da Doença , Cuidados Paliativos/psicologia , Espiritualidade , Adaptação Psicológica , Adulto , Idoso , Brasil , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/métodos , Cuidados Paliativos/tendências , Inquéritos e Questionários
8.
Eur J Pediatr ; 178(2): 207-211, 2019 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-30392051

RESUMO

Research in children should strike the right balance between protecting underage study subjects and advancing the medical field. This study gives insight into the emotional burden that common invasive research procedures in asthma research have on young children, both from the child and parent perspective. Puppetry was used to stimulate children (age 5-6 years) to explain their emotional burden prior to and after the research procedures. We operationalised emotional burden as willingness to participate in future research and reluctance towards participation. Parents filled out a questionnaire on this topic. Symptomatic patients as well as healthy controls were analysed. Forty-one children were included. Children's anticipatory fear for future research showed a clear decrease of 0.7 ± 1.6 on a 5-point Likert scale as a consequence of participation (p = 0.02). Sixty percent of all participating children explicitly indicated willingness to undergo identical research procedures again. Children uninformed by their parents about the venipuncture were significantly more reluctant to the venipuncture after the procedure (p < 0.01), compared to children who had been informed (4.0 ± 0.9 resp. 2.8 ± 1.2).Conclusion: This study suggests that the emotional burden of participation in asthma research for underage children can be prevented when they are properly informed and decreases as a consequence of participations. We believe increased emphasis should be placed on informing children and evaluating the emotional impact of research to help caretakers and research ethics committees make informed decisions about participation of children in medical research. What is Known: • Medical professionals and parents are likely to overestimate children's discomfort undergoing (invasive) research procedures. • Two thirds of children (age 6-18 years) participating in medical research indicated that they would participate in the same research study again. What is New: • Pre-school children experience little emotional burden during invasive procedures in asthma research. • Proper communication about (invasive) research procedures in pre-school children helps to reduce the anticipatory fear of these procedures in the future.


Assuntos
Asma/psicologia , Emoções , Participação do Paciente/psicologia , Flebotomia/psicologia , Sujeitos da Pesquisa/psicologia , Pesquisa Biomédica/estatística & dados numéricos , Criança , Pré-Escolar , Ética em Pesquisa , Feminino , Humanos , Masculino , Pais , Jogos e Brinquedos , Inquéritos e Questionários , Escala Visual Analógica
9.
Acta Neurochir (Wien) ; 161(12): 2527-2537, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31602535

RESUMO

OBJECTIVE: To analyze psychopathological outcome and health-related quality of life (QOL) for cohorts of patients undergoing transcranial or transnasal anterior skull base surgery. METHODS: A prospective study of patients undergoing elective surgery for various entities of the anterior skull base was performed. Evaluation for depression (ADS-K score) and anxiety (PTSS, STAI-S, STAI-T, and ASI-3 scores) was done before surgery, at 3 and 12 months after surgery. The correlation between preoperative psychological burden and postoperative quality of life as measured by the SF-36 and EuroQol questionnaires was analyzed. Incidence and influence of these psychiatric comorbidities on clinical outcome were examined and compared between transnasal and transcranial subgroups. RESULTS: We included 54 patients scheduled for surgery of a pituitary adenoma or meningioma of the anterior skull base between January 2013 and July 2017. Of these, a cohort of 40 (74.1%) completed follow-up interviews after 3 and 12 months. There were 60.0% female patients, median age was 57 years. 57.5% of patients had a meningioma and were operated transcranially, while 42.5% of patients received transnasal surgery for pituitary adenoma. The proportion of pathological anxiety scores significantly decreased from 75.0 to 45.0% (p = 0.002), without difference between transnasal and transcranial subgroups. After 3 months, mean EuroQol VAS score non-significantly increased by 0.07 (p = 0.236) across the entire cohort without significant difference between transcranial and transnasal subgroups (p = 0.478). The transnasal cohort tended to score higher in anxiety scores, whereas the transcranial cohort demonstrated higher depression scores without significant difference, respectively. The individually declared emotional burden significantly decreased from 6.7 to 4.0 on the ten-point Likert scale (p < 0.001) equally for both subgroups (transnasal, - 2.3; transcranial, - 3.0; p = 0.174). On last examination, about half of the patients in each subgroup (41.2% vs. 52.2%; p = 0.491) expressed a considerable recovery of preoperative bodily complaints such as headaches, dizziness, and unrest defined as a score of at least 8 on the Likert scaled item. CONCLUSION: Both transnasal and transcranial approaches yield favorable postoperative QOL and psychopathological outcomes. The postoperative increase in QOL is partly influenced by preoperative expression of mental distress, which tends to resolve postoperatively.


Assuntos
Cefaleia/epidemiologia , Cirurgia Endoscópica por Orifício Natural/efeitos adversos , Procedimentos Neurocirúrgicos/efeitos adversos , Complicações Pós-Operatórias/epidemiologia , Angústia Psicológica , Qualidade de Vida , Base do Crânio/cirurgia , Adulto , Idoso , Feminino , Humanos , Masculino , Neoplasias Meníngeas/cirurgia , Meningioma/cirurgia , Pessoa de Meia-Idade , Cirurgia Endoscópica por Orifício Natural/métodos , Procedimentos Neurocirúrgicos/métodos , Neoplasias Hipofisárias/cirurgia , Inquéritos e Questionários
10.
Z Kinder Jugendpsychiatr Psychother ; 47(6): 503-526, 2019 Nov.
Artigo em Alemão | MEDLINE | ID: mdl-31269864

RESUMO

Intervention programs for psychological stress in children of military personnel in the USA - Results of a systematic literature review with regard to transferability to Germany Abstract. Military personnel who have been deployed in war zones or other unstable regions are at an increased risk to develop mental health disorders, including posttraumatic stress disorder. Likewise, their children are at high risk to develop mental health problems as well as emotional and behavioral difficulties. Most research on prevalence of mental health problems as well as on interventions within this group was conducted in the USA. In Germany, no systematic intervention for children of military members focusing on their experiences of deployment exist. The systematic literature review aimed to analyze existing intervention programs in the USA, in particular for children of military members regarding evidence, type and addressed target group (parents, children, both). Compared to the social welfare and health care systems in the USA, the German systems are different. Hence, a second aim was to examine the transferability of these programs to the specific needs of children of German military members (Bundeswehr). 27 intervention programs could be included in the review. Programs, directly or indirectly, are addressing the needs of children of a deployed parent. They are usually focusing on the "emotional cycle of deployment" (phase of preparation of deployment, separation phase of deployment and the return of the deployed parent). The programs mainly focused on parenting skills, family reactions to stress, coping strategies of families, and the feeling of coherence within the family. Only 20 % of the interventions could be assigned to the type of indicated prevention. Nine interventions have shown positive effects (either in RCT or non-experimental designs). Several elements of the programs are transferable to the German situation of children of military members. In particular, contents which address the specific situation of families with a military member are desperately needed in Germany. Transferability is limited by the non-comparability of health care and social welfare systems in the USA and in Germany.


Assuntos
Militares , Pais , Estresse Psicológico/prevenção & controle , Estresse Psicológico/psicologia , Adaptação Psicológica , Criança , Atenção à Saúde/organização & administração , Alemanha , Humanos , Militares/psicologia , Pais/psicologia , Seguridade Social , Estados Unidos
11.
Occup Environ Med ; 75(9): 647-653, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-30026283

RESUMO

OBJECTIVE: To determine whether there are reciprocal relations between care-related regret and insomnia severity among healthcare professionals, and whether the use of different coping strategies influences these associations. METHODS: This is a multicentre international cohort study of 151 healthcare professionals working in acute care hospitals and clinics (87.4% female; mean age=30.4±8.0 years, 27.2% physicians, 48.3% nurses and 24.5% other professions) between 2014 and 2017. Weekly measures of regret intensity, number of regrets, and use of coping strategies (Regret Coping Scale) and sleep problems (Insomnia Severity Index) were assessed using a web survey. RESULTS: The associations between regret and insomnia severity were bidirectional. In a given week, regret intensity (bregret intensity→sleep=0.26, 95% credible interval (CI) (0.14 to 0.40)) and number of regrets (bnumber of regrets→sleep=0.43, 95% CI (0.07 to 0.53)) were significantly associated with increased insomnia severity the following week. Conversely, insomnia severity in a given week was significantly associated with higher regret intensity (bsleep→regret intensity=0.14, 95% CI (0.11 to 0.30)) and more regrets (bsleep→number of regrets=0.04, 95% CI (0.02 to 0.06)) the week after. The effects of regret on insomnia severity were much stronger than those in the opposite direction. The use of coping strategies, especially if they were maladaptive, modified the strength of these cross-lagged associations. CONCLUSIONS: The present study showed that care-related regret and sleep problems are closely intertwined among healthcare professionals. Given the high prevalence of these issues, our findings call for the implementation of interventions that are specifically designed to help healthcare professionals to reduce their use of maladaptive coping strategies.


Assuntos
Emoções , Pessoal de Saúde/psicologia , Doenças Profissionais/etiologia , Distúrbios do Início e da Manutenção do Sono/etiologia , Adaptação Psicológica , Adulto , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Doenças Profissionais/psicologia , Estudos Prospectivos , Fatores de Risco , Índice de Gravidade de Doença , Distúrbios do Início e da Manutenção do Sono/psicologia
12.
J Pak Med Assoc ; 68(11): 1590-1596, 2018 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-30410134

RESUMO

OBJECTIVE: To assess diabetes distress and its associated factors in Pakistani population.. METHODS: The cross-sectional study was conducted at Pakistan Institute of Medical Sciences, Islamabad, Pakistan, from July to December 2017, and comprised patients of diabetes type 2. After noting down demographic and clinical parameters, diabetes distress of the subjects was measured by applying the 17-item diabetes distress scale which also assesses sub domains like emotional burden, physicianrelated distress, regimen-related distress and interpersonal distress. SPSS 20 was used to analyse data. RESULTS: There were 349 subjects with a mean age of 53.14±11.77 years, mean diabetes duration of 8.36±6.64 years and a mean glycated haemoglobin value of 9.05±1.93%. Mean overall diabetes distress score was 2.55±0.75, signifying moderate distress. Overall, prevalence of diabetes distress was found among 266(76.2%) subjects;164(47%) moderate and 102(29.2%) high level distress. Emotional burden was most substantially elevated, with 296(84.8%) patients reporting moderate to high levels. Total diabetes distress was significantly related to demographic background (p<0.0001), education level (p=0.015), monthly income, frequency of administration of medication, adherence to medical treatment (p<0.05), number of complications (p<0.05) and overall glycaemic control (p<0.001). CONCLUSIONS: Modifiable factors, such as frequency of medication and compliance to treatment, should be addressed with the aim of decreasing diabetes distress and improve glycaemic control..


Assuntos
Diabetes Mellitus Tipo 2/complicações , Emoções/fisiologia , Etnicidade , Adesão à Medicação/psicologia , Medição de Risco , Estresse Psicológico/etnologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Glicemia/metabolismo , Estudos Transversais , Diabetes Mellitus Tipo 2/sangue , Diabetes Mellitus Tipo 2/etnologia , Feminino , Humanos , Incidência , Masculino , Pessoa de Meia-Idade , Paquistão/epidemiologia , Fatores de Risco , Estresse Psicológico/etiologia
13.
Support Care Cancer ; 24(7): 3147-55, 2016 07.
Artigo em Inglês | MEDLINE | ID: mdl-26928441

RESUMO

PURPOSE: Few studies have examined distress in caregivers of pediatric cancer patients. We evaluated the association of socioeconomic, demographic, and patient clinical factors on caregivers' self-reported psychological distress associated with having a child with cancer. METHODS: N = 366 pediatric cancer caregivers completed a self-administered questionnaire from July 2010 to July 2012. The Impact of Event Scale (IES), along with two subscales "intrusion" and "avoidance" measured caregiver cancer-specific distress, with higher scores indicating greater distress. Multivariable linear regression models were used to calculate coefficients (ß) and 95 % confidence intervals (95 % CI) of IES by socioeconomic, demographic, and clinical factors. RESULTS: Average caregiver IES score was 31.2 (standard deviation (SD) = 16.9, range 0-75). Mean intrusion score was 18.1 (SD 9.8, range 0-35) and avoidance score was 12.8 (SD 9.0, range 0-40). Caregivers with household incomes <$40,000 reported higher mean distress scores than those with incomes ranging from $40,000 to $79,999 (ß = 4.45, 95 % CI 0.04-8.87, p = 0.05). Infrequently or never attending religious services, younger child age, and a diagnosis of AML were associated with higher intrusion (all p < 0.05). Caregivers with a child currently receiving therapy reported higher overall IES (ß = 5.9, 95 % CI 2.15-9.7, p < 0.01) and intrusion (ß = 4.1, 95 % CI 1.9-6.3, p < 0.001) scores compared to those off therapy (ß = 3.13, 95 % CI 0.93-5.33, p < 0.01). CONCLUSIONS: Our findings identify socioeconomic and clinical factors that influence psychological distress for caregivers of pediatric oncology patients. These findings underscore the importance of developing and testing interventions aimed at evaluating and addressing the psychosocial needs for high-risk caregivers in addition to those of patients.


Assuntos
Cuidadores/psicologia , Neoplasias/psicologia , Neoplasias/terapia , Estresse Psicológico/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Inquéritos e Questionários , Adulto Jovem
14.
J Neurol ; 271(2): 688-698, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37875677

RESUMO

Central neuropathic pain (CNP) and musculoskeletal pain (MSP) are often comorbid with multiple sclerosis (MS), yet data on the emotional burden entailed by this comorbidity are very limited. We studied whether MS patients with CNP exhibited greater emotional burden and pain severity than those with MSP and whether this emotional burden was attributed to the MS, the chronic pain, or both. Participants were 125 MS patients (55 with CNP; 30 with MSP; 40 MS pain-free) and 30 healthy controls (HCs). Participants completed questionnaires assessing pain interference, pain catastrophizing, depression, anxiety, stress, hypervigilance, and chronic pain. Group comparisons and a two-step cluster analysis were performed, and the association between cluster membership and clinical group membership was evaluated. Chronic pain was stronger and more widespread in the CNP group than in the MSP group. Both pain groups had higher pain interference, pain catastrophizing, and stress compared to MS pain-free and HC groups. All MS groups had greater depression levels compared to HCs, and the CNP group had the highest anxiety level. The "high psychological distress" cluster comprised mainly participants with CNP (57%), and the "minimal psychological distress" cluster comprised mainly the MS pain-free and HC groups. In conclusion, CNP seems to induce greater emotional burden and pain severity than does MSP. Whereas depression may be attributed to MS, and anxiety to CNP, enhanced pain interference, catastrophizing, and stress may be attributed to the comorbidity of MS and chronic pain. Identifying these traits among MS patients and targeting them in management programs may contribute to more effective, individually based care.


Assuntos
Dor Crônica , Esclerose Múltipla , Humanos , Dor Crônica/diagnóstico , Dor Crônica/epidemiologia , Ansiedade/epidemiologia , Medição da Dor , Catastrofização , Esclerose Múltipla/complicações , Esclerose Múltipla/epidemiologia
15.
Patient Prefer Adherence ; 18: 1857-1871, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39280347

RESUMO

Purpose: To provide real-world data on patient perceptions and experiences with subcutaneous (SC) versus intravenous (IV) daratumumab. Patients and Methods: This was a cross-sectional, mixed-method (qualitative/quantitative) survey conducted in France, Germany, Spain and the United Kingdom involving multiple myeloma (MM) patients who switched from IV to SC daratumumab in the last 12 months (qualitative phase) or 24 months (quantitative phase [26 months in the UK]) prior to enrollment in the study. Results: Nine patients (mean age 65 years) participated in the qualitative phase and 113 patients (mean age 65.1 years) in the quantitative phase. Qualitative study results provided insights for the quantitative study and highlighted the benefits of switching from daratumumab IV to daratumumab SC as an improvement and a satisfactory change in patients' treatment journey. Quantitative survey showed that patients were significantly less anxious, stressed and nervous before SC injections than IV infusions (mean score: 1.3, 1.1, 1.4 versus 2.1, 2.0, 2.0 respectively, p<0.001), and significantly more reassured, ready/well-prepared, usual self and relieved (mean score: 3.8, 4.3, 3.7, 3.6 versus 3.0, 3.6, 3.1, 3.0 respectively, p<0.001). Immediately after SC first injection, 96.5% patients were feeling well or very well versus 77.9% immediately after IV first infusion (p<0.001). 97.3% patients were satisfied with their SC treatment versus 89.4% for the IV injection (p<0.001). Patients spent significantly less time in hospital for an SC injection of daratumumab than for an IV infusion, 1.5 hours and 5.0 hours respectively (p<0.001). In the UK, the differences between the two administration forms were less visible, likely because of confounding factors including a longer time passed since the switch from the IV to the SC form and administration of the survey. Conclusion: In line with results from other studies, the SC form of daratumumab had less impact on patients' emotional burden than the IV form.

16.
Sci Rep ; 14(1): 10688, 2024 05 09.
Artigo em Inglês | MEDLINE | ID: mdl-38724683

RESUMO

Diabetes-related distress (DRD) refers to the psychological distress specific to living with diabetes. DRD can lead to negative clinical consequences such as poor self-management. By knowing the local prevalence and severity of DRD, primary care teams can improve the DRD evaluation in our daily practice. This was a cross-sectional study conducted in 3 General Out-patient Clinics (GOPCs) from 1 December 2021 to 31 May 2022. A random sample of adult Chinese subjects with T2DM, who regularly followed up in the selected clinic in the past 12 months, were included. DRD was measured by the validated 15-item Chinese version of the Diabetes Distress Scale (CDDS-15). An overall mean score ≥ 2.0 was considered clinically significant. The association of DRD with selected clinical and personal factors was investigated. The study recruited 362 subjects (mean age 64.2 years old, S.D. 9.5) with a variable duration of living with T2DM (median duration 7.0 years, IQR 10.0). The response rate was 90.6%. The median HbA1c was 6.9% (IQR 0.9). More than half (59.4%) of the subjects reported a clinically significant DRD. Younger subjects were more likely to have DRD (odds ratio of 0.965, 95% CI 0.937-0.994, p = 0.017). Patients with T2DM in GOPCs commonly experience clinically significant DRD, particularly in the younger age group. The primary care clinicians could consider integrating the evaluation of DRD as a part of comprehensive diabetes care.


Assuntos
Diabetes Mellitus Tipo 2 , Atenção Primária à Saúde , Humanos , Diabetes Mellitus Tipo 2/epidemiologia , Diabetes Mellitus Tipo 2/psicologia , Pessoa de Meia-Idade , Masculino , Feminino , Hong Kong/epidemiologia , Prevalência , Estudos Transversais , Idoso , Angústia Psicológica , Estresse Psicológico/epidemiologia , Fatores de Risco
17.
Front Psychol ; 14: 1116566, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37213392

RESUMO

Objectives: We aimed to (1) describe the course of the emotional burden (i.e., depression, anxiety, and stress) in a general population sample during the coronavirus pandemic in 2020 and 2021 and (2) explore the association between emotional burden and a serologically proven infection with SARS-CoV-2. Study design: This longitudinal study involved a sample of community-dwelling persons aged ≥14 years from the general population of South Tyrol (Province of Bolzano-Bozen, Northern Italy). Data were collected at two stages over a 1-year period in 2020 and 2021. Methods: Persons were invited to participate in a survey on socio-demographic, health-related and psychosocial variables (e.g., age, chronic diseases, Depression Anxiety Stress Scale, DASS-21), as well as in the serological testing for of SARS-CoV-2-specific immunoglobulins. Results: In 2020, 855 (23.8%) out of 3,600 persons participated; in 2021, 305 (35.7%) out of 855 were tested again. We observed a statistically significant decrease in mean DASS-21 scores for depression, stress, and total scores between 2020 and 2021, yet not for anxiety. Persons with a confirmed SARS-CoV-2-infection between the first and second data collection exhibited increased emotional burden compared to those without SARS-CoV-2-infection. The odds of participants with a self-reported diagnosis of mental disorder for future infection with SARS-CoV-2 was almost four times higher than that of participants without mental disorders (OR:3.75; 95%CI:1.79-7.83). Conclusion: Our findings support to the hypothesis of a psycho-neuroendocrine-immune interplay in COVID-19. Further research is necessary to explore the mechanisms underlying the interplay between mental health and SARS-CoV-2 infections.

18.
Healthcare (Basel) ; 11(18)2023 Sep 08.
Artigo em Inglês | MEDLINE | ID: mdl-37761698

RESUMO

(1) Background: The second victim phenomenon (SVP) plays a critical role in workplace and patient safety. So far, there are limited epidemiological data on the SVP in German-speaking countries. Some studies have been carried out in Germany, but so far, no quantitative studies have been carried out in Austria examining the prevalence, symptom load and preferred support measures for second victims (SVs). This study therefore examines the SVP among Austrian pediatricians. (2) Methods: A nationwide, cross-sectional and anonymous online study was conducted using the SeViD questionnaire (Second Victims in Deutschland) including the Big Five Inventory-10 (BFI-10). Statistical analysis included binary-logistic and multiple linear regression with the bootstrapping, bias-corrected and accelerated (BCa) method based on 1000 bootstrap samples. (3) Results: Of 414 Austrian pediatricians, 89% self-identified as SVs. The main cause of becoming an SV was the unexpected death or suicide of a patient. High neuroticism and extraversion values as well as working in outpatient care positively correlated with having experienced the SVP. A preferred support strategy was access to legal counseling. (4) Conclusions: Austrian pediatricians have the highest SVP prevalence measured with the SeViD questionnaire. Further research should focus on prevention strategies and intervention programs.

19.
Cureus ; 15(11): e49267, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-38143643

RESUMO

Rheumatic disease imposes a substantial emotional burden on individuals, leading to chronic pain, discomfort, anxiety, and depression. Coping with unpredictability and physical limitations can create a detrimental feedback loop, exacerbating mental and physical symptoms. Poor mental health can hinder treatment adherence and worsen disease progression. Addressing the emotional impact of rheumatic disease is crucial for comprehensive management. Healthcare providers play a critical role in recognizing psychosocial concerns through attentive listening and standardized screenings. Open communication and a collaborative approach lead to more effective care. Support systems involving family, friends, and support groups provide emotional help and reduce isolation. Coping strategies and self-management techniques empower patients to navigate their conditions. The stigma associated with mental health is a challenge that requires education, awareness, and patient advocacy. A multidisciplinary approach integrating mental health services is pivotal for addressing the psychosocial aspects of rheumatic disease, offering a holistic perspective. Ongoing research explores the interplay between mental health and physical symptoms, aiming for innovative therapies and improved patient care. Collaborative care models and patient advocacy are essential to reducing barriers and improving patient outcomes. The future of rheumatic disease management lies in a patient-centered, multidisciplinary approach that addresses both physical and mental aspects.

20.
Diabetes Ther ; 13(3): 517-533, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-35199292

RESUMO

AIMS: The CRASH study examined severe hypoglycemia (SH) experiences among people with diabetes (PWD) and caregivers across eight countries. Here we report findings from the Japan cohort, with references to data from the United Kingdom (UK) cohort. MATERIALS AND METHODS: Adults with type 1 (T1DM) or insulin-treated type 2 diabetes mellitus (T2DM) and caregivers (not necessarily related) were recruited from online patient panels. Participants who had experienced at least one SH event in the past 3 years were eligible for study inclusion. Participants completed an online survey regarding their experience with SH, its treatment, and actions during and after an event. RESULTS: Of the 9367 PWD and caregivers from the online patient panels, 8475 participants were ineligible and a total of 53 Japanese participants (35 T1DM, 9 T2DM, 9 caregivers) completed the survey. Most SH incidents occurred at home and were unattended by a healthcare provider. For T1DM, 29% of Japan PWD and 13% of the UK PWD called an ambulance during an SH event; of these, 90% (Japan) and 50% (UK) were transported to hospital. Glucagon use was low (3% Japan and 10% UK for T1DM). Japanese respondents reported emotional impacts of SH, including feeling scared (86% T1DM, 56% T2DM), unprepared (63% T1DM, 78% T2DM), and helpless (60% T1DM, 33% T2DM). Despite the emotional burden, most PWD did not immediately discuss their SH event with a healthcare provider, with the majority (75% T1DM, 71% T2DM) waiting until their next doctor's appointment. CONCLUSION: Conversations around SH between healthcare providers and PWD appear to be insufficient in Japan. An emotional burden of SH was reported by PWD and caregivers. Education regarding the prevention of SH and available treatment options may reduce SH events and improve treatment preparation, while alleviating PWD concerns.

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