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1.
Int J Chron Obstruct Pulmon Dis ; 15: 1415-1423, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32606650

RESUMO

Introduction: Self-management (SM) is a core component of well-being and perceived health for patients with chronic obstructive pulmonary disease (COPD). Most theories on SM share that self-efficacy, illness-perception and coping are determinants of SM behavior. Optimal support to improve SM should be tailored to the individual patient's level of these determinants as SM abilities vary between patients. To tailor SM support, it is therefore necessary to assess the scores on these determinants. Unfortunately, no such instrument exists for clinical use. Therefore, the first goal of this study was to verify presumed correlations between SM and the determinants thereof. The second goal was to develop an instrument to assess the SM abilities. Methods: In this cross-sectional, observational study, COPD patients completed the General Self-Efficacy Scale (GSES), Brief Illness Perception Questionnaire (B-IPQ) and the Utrecht Proactive Coping Competence measure (UPCC) as well as the Self-Management Ability Scale (SMAS-30). Correlations between the questionnaires were assessed and a principal component analysis (PCA) was performed to identify the best-fitting items in the three independent variables related to SM. These items were used to create an instrument to assess SM abilities. Results: Hundred COPD patients (58 males, 41 females, 1 unknown) were included. The correlation between SM and self-efficacy, illness perception on concerns and proactive coping was moderate and significant (r=0.318, p<0.01; r=-.230, p<0.05; r=.426, p<0.01, respectively). PCA identified six UPCC items and nine GSES items that met the predefined criteria. These items were supplemented with the B-IPQ concerns item to establish the new instrument to assess SM abilities.


Assuntos
Expedições , Doença Pulmonar Obstrutiva Crônica , Autogestão , Estudos Transversais , Feminino , Humanos , Masculino , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Doença Pulmonar Obstrutiva Crônica/terapia , Inquéritos e Questionários
2.
Qual Life Res ; 29(11): 2961-2975, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-32529343

RESUMO

PURPOSE: The diagnosis and treatment of cancer negatively affect patients' physical, functional and psychological wellbeing. Patients' needs for care cannot be addressed unless they are recognized by healthcare providers (HCPs). The use of quality of life (QoL) assessments with feedback to HCPs might facilitate the identification and discussion of QoL-topics. METHODS: 113 patients with stage I-IIIB breast cancer treated with chemotherapy were included in this randomized controlled trial. Patients were randomly allocated to receive either usual care, or usual care with an intervention consisting of a QoL-monitor assessing QoL, distress and care needs before every chemotherapy cycle visit. Patients completed questionnaires regarding QoL, illness perceptions, self-efficacy, and satisfaction with communication. From the 2nd visit onwards, patients in the intervention arm and their HCPs received a copy of the QoL overview and results were shown in patients' medical files. Audio-recordings and patients' self-reports were used to investigate effects on communication, patient management and patient-wellbeing. A composite score for communication was calculated by summing the number of QoL-topics discussed during each consultation. RESULTS: Use of the QoL-monitor resulted in a higher communication score (0.7 topics increase per visit, p = 0.04), especially regarding the disease-specific and psychosocial issues (p < 0.01). There were no differences in patient management, QoL, illness perceptions or distress. Patients in the experimental arm (n = 60) had higher scores on satisfaction with communication (p < 0.05). CONCLUSIONS: Use of a QoL-monitor during chemotherapy in patients with early breast cancer might result in a more frequent discussion of QoL-topics, associated with high levels of patients' satisfaction.


Assuntos
Neoplasias da Mama/psicologia , Detecção Precoce de Câncer/métodos , Qualidade de Vida/psicologia , Adulto , Idoso , Feminino , Humanos , Pessoa de Meia-Idade , Inquéritos e Questionários , Suécia , Adulto Jovem
3.
J Psychosom Res ; 116: 54-61, 2019 01.
Artigo em Inglês | MEDLINE | ID: mdl-30654994

RESUMO

OBJECTIVE: To describe the illness perceptions (IP) of stroke patients in the first year post stroke; to identify patient clusters with comparable IP trajectories and determine their associations with health. METHODS: This prospective study included consecutive stroke patients after medical rehabilitation. Three and 12 months post stroke they completed the Brief Illness Perception Questionnaire (B-IPQ) and questionnaires on physical and mental health. All eight IP and their changes over time were described. Clusters of patients with comparable IP trajectories were constructed by k-means clustering, with subsequent comparison of patient characteristics. Multivariable logistic regression analyses were conducted to determine the association between IP clusters and 12-month mental health. RESULTS: Hundred-and-eighty-four patients were included (men n = 107 [58.2%]; mean age 61.1 [SD 12.7] years). At 3 months, the scores of the IP coherence (mean 3.0, SD 2.3) and treatment control (mean 3.2, SD 2.5) were lowest (best), and consequences (mean 6.1, SD 2.8) and anticipated timeline (mean 6.0, SD 2.7) were highest (worst). At 12 months, the timeline and treatment control scores had significantly worsened. Three clusters of the trajectories of IP were identified, and designated as 'favourable', 'average', and 'unfavourable'. The unfavourable cluster was significantly associated with worse physical and mental health at 3 months (unadjusted) and depressive symptoms at 12 months. CONCLUSION: Stroke patients' IP partly changed between 3 and 12 months post stroke. Patients with an unfavourable IP trajectory had a higher chance of depressive symptoms at 12 months. Illness perceptions could be considered as an additional target of treatment.


Assuntos
Acidente Vascular Cerebral/mortalidade , Sobreviventes/psicologia , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Percepção , Estudos Prospectivos , Inquéritos e Questionários , Fatores de Tempo
4.
Death Stud ; 43(9): 570-581, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30265841

RESUMO

Not all physicians readily discuss death with their terminal patients. To explore whether physicians discuss dying with their terminal patients and to pursue an in-depth understanding of patients' perceptions of death, we interviewed terminal cancer patients in a Dutch hospice and compared their stories to quotes from two autobiographies on dying from cancer, Christopher Hitchens' Mortality and Anatole Broyard's Intoxicated by my illness. This narrative medicine study could potentially teach physicians they should discuss impending death to prevent the use of an invasive medical treatment that typically extends the quantity, but not the quality, of life.


Assuntos
Medicina Narrativa , Neoplasias/psicologia , Assistência Terminal/psicologia , Idoso , Idoso de 80 Anos ou mais , Atitude Frente a Morte , Feminino , Cuidados Paliativos na Terminalidade da Vida/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Pacientes/psicologia , Relações Médico-Paciente
5.
Calcif Tissue Int ; 103(5): 469-475, 2018 11.
Artigo em Inglês | MEDLINE | ID: mdl-29948062

RESUMO

Impairments in quality of life (QoL) have been reported in patients with fibrous dysplasia (FD). Here, we examine coping strategies in FD and assess whether these coping strategies are associated with QoL and disease severity. Ninety-two patients (66% females) filled out the Utrecht Coping List (UCL), Short Form-36, and the Brief Pain Inventory (BPI). Coping strategies of patients with FD were compared with reference data from a random sample of Dutch women and patients with chronic pain. Compared to healthy adults, patients expressed more emotions (p < 0.01). Compared to patients with chronic pain, patients with FD used more active coping strategies (p < 0.001), and sought more distraction (p = 0.01) and more social support (p < 0.001). Using more passive coping strategies was associated with more impairment in social function, physical role, mental health, vitality (all p < 0.001), and general health (p < 0.01). Using more avoidant coping strategies was associated with worse mental health and less vitality (both p < 0.01). More expression of emotions was associated with worse mental health (p < 0.01). Type and clinical severity of FD were not associated with coping behavior. Patients with FD have different coping strategies compared to random Dutch reference populations with or without pain. In FD, using more passive coping strategies was associated with more impairment in several aspects of QoL. There was no relationship between coping behavior and clinical characteristics, pointing to biomedical variables not determining the way patients cope with their illness. Recognition of less effective coping strategies can be helpful in the understanding and adaptation of these coping strategies, improving personalized clinical care, with the ultimate goal to improve QoL in patients with FD.


Assuntos
Adaptação Psicológica , Displasia Fibrosa Óssea/psicologia , Qualidade de Vida/psicologia , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários
6.
Calcif Tissue Int ; 102(1): 23-31, 2018 01.
Artigo em Inglês | MEDLINE | ID: mdl-29022055

RESUMO

Fibrous dysplasia (FD) is a rare bone disorder in which normal bone is replaced by fibrous tissue resulting in pain, deformities, pathological fractures or asymptomatic disease. Illness perceptions are patients' cognitions and emotions about their illness and its treatment, which may impact on Quality of Life (QoL). Here, we explore illness perceptions in patients with FD compared to other disorders, identify factors associated with illness perceptions and evaluate their relationship with QoL. Ninety-seven out of 138 eligible patients from the LUMC FD cohort completed the Illness Perception Questionnaire-Revised (IPQ-R) and the Short Form-36 (SF-36). Age, Gender, Skeletal Burden Score (SBS), FGF-23 levels, type of FD and SF-36 scores were analysed for an association with illness perceptions. We observed significant (p < 0.01) differences in patients' illness perceptions between FD subtypes in the domains: identity, timeline acute/chronic and consequences. Patients with craniofacial FD reported to perceive more consequences (p = 0.022). High SBS was associated with perceiving more negative consequences and attributing the cause of FD to psychological factors (p < 0.01), and high FGF-23 levels with attributing more symptoms to the disease and perceiving more consequences (p < 0.01). The IPQ-R domain identity, timeline acute/chronic, timeline cyclical, consequences, emotional representations and treatment control were significantly associated with impairments in QoL. Illness perceptions in patients with FD relate to QoL, differ from those in patients with other disorders, and are associated with disease severity. Identifying and addressing maladaptive illness perceptions may improve quality of life in patients with FD.


Assuntos
Displasia Fibrosa Óssea/psicologia , Dor/psicologia , Percepção/fisiologia , Qualidade de Vida , Autogestão/psicologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Fator de Crescimento de Fibroblastos 23 , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto Jovem
7.
Breast Cancer Res Treat ; 166(2): 459-471, 2017 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-28762012

RESUMO

PURPOSE: Cultural differences are hypothesized to influence patients' Quality of Life (QoL) reports. However, there is a lack of empirical cross-cultural studies comparing QoL of patients with cancer. This study aims to compare QoL of women with breast cancer in the Netherlands and Japan, and to investigate the association of QoL with sociodemographic, clinical, and psychological variables (illness perceptions). METHODS: Dutch (n = 116) and Japanese (n = 148) women with early breast cancer undergoing chemotherapy completed the EORTC QLQ-C30 and Brief Illness Perception Questionnaire immediately before their second cycle of chemotherapy. RESULTS: Dutch women reported poorer Physical, Role, Emotional, and Cognitive functioning than Japanese women. Additionally, illness perceptions were significantly different in Japan and the Netherlands, but these did not vary across treatment type. In Japan, QoL of women receiving AC-chemotherapy was better than that of women receiving FEC-chemotherapy, whereas in the Netherlands, QoL did not vary as a function of chemotherapy. Illness perceptions about symptom severity, adverse consequences, and emotional representations were negatively related to most domains of patients' QoL in both countries. Adding illness perceptions as covariates to the ANOVA analyses rendered the effects of country and treatment type on QoL non-significant. CONCLUSIONS: Comparing Dutch and Japanese women with early breast cancer revealed important differences in treatment modalities and illness perceptions which both appear to influence QoL. Perceptions about cancer have been found to vary across cultures, and our study suggests that these perceptions should be considered when performing cross-cultural studies focusing on patient-reported outcomes.


Assuntos
Protocolos de Quimioterapia Combinada Antineoplásica/administração & dosagem , Neoplasias da Mama/tratamento farmacológico , Neoplasias da Mama/psicologia , Tratamento Farmacológico/psicologia , Qualidade de Vida/psicologia , Adulto , Protocolos de Quimioterapia Combinada Antineoplásica/uso terapêutico , Comparação Transcultural , Feminino , Humanos , Japão , Pessoa de Meia-Idade , Países Baixos , Resultado do Tratamento
8.
Lupus ; 26(12): 1252-1259, 2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-28420059

RESUMO

Objective Assess quality of life in patients with systemic lupus erythematosus (SLE) presenting with neuropsychiatric symptoms (neuropsychiatric SLE, NPSLE). Methods Quality of life was assessed using the Short-Form 36 item Health Survey (SF-36) in patients visiting the Leiden NPSLE clinic at baseline and at follow-up. SF-36 subscales and summary scores were calculated and compared with quality of life of the general Dutch population and patients with other chronic diseases. Results At baseline, quality of life was assessed in 248 SLE patients, of whom 98 had NPSLE (39.7%). Follow-up data were available for 104 patients (42%), of whom 64 had NPSLE (61.5%). SLE patients presenting neuropsychiatric symptoms showed a significantly reduced quality of life in all subscales of the SF-36. Quality of life at follow-up showed a significant improvement in physical functioning role ( p = 0.001), social functioning ( p = 0.007), vitality ( p = 0.023), mental health ( p = 0.014) and mental component score ( p = 0.042) in patients with neuropsychiatric symptoms not attributed to SLE, but no significant improvement was seen in patients with NPSLE. Conclusion Quality of life is significantly reduced in patients with SLE presenting neuropsychiatric symptoms compared with the general population and patients with other chronic diseases. Quality of life remains considerably impaired at follow-up. Our results illustrate the need for biopsychosocial care in patients with SLE and neuropsychiatric symptoms.


Assuntos
Lúpus Eritematoso Sistêmico/psicologia , Vasculite Associada ao Lúpus do Sistema Nervoso Central/fisiopatologia , Qualidade de Vida , Adulto , Feminino , Seguimentos , Inquéritos Epidemiológicos , Humanos , Lúpus Eritematoso Sistêmico/fisiopatologia , Vasculite Associada ao Lúpus do Sistema Nervoso Central/psicologia , Masculino , Pessoa de Meia-Idade , Países Baixos
9.
Int J Behav Med ; 24(2): 205-214, 2017 04.
Artigo em Inglês | MEDLINE | ID: mdl-27757843

RESUMO

PURPOSE: Patients with inflammatory bowel disease (IBD) often experience severe impairment in different life domains. Psychological factors, such as illness perceptions and coping, may play a role in the adjustment to IBD as indicated by mental and physical health, activity, and work impairment. The present study aimed at examining the assumption of the Common Sense Model (CSM) that coping mediates the relationship between illness perceptions and adjustment in patients with IBD. METHOD: In a cross-sectional design, 211 IBD patients (73 % Crohn's disease, 40 % male, mean age 42.9 ± 12.9 years) attending an outpatient clinic completed questionnaires assessing illness perceptions (IPQ-R), coping (CORS), mental and physical health (SF-36), as well as activity and work impairment (WPAI). Multiple mediation analyses were applied that allow estimating the total and direct effects of all illness perception dimensions and the indirect effects through all coping strategies on the illness outcomes simultaneously. RESULTS: The analyses yielded significant direct effects of perceptions regarding the cyclical course, the chronic course, the severity of the consequences, the comprehensibility, and the emotional impact of IBD on study outcomes. Additionally, significant indirect effects were found for the perceptions regarding the severity of the consequences, the possibility of personal control, and the comprehensibility of IBD on mental and physical health as well as activity impairment through the use of one specific coping strategy, i.e., reduction of activity. CONCLUSION: The results provide evidence for the assumptions of the CSM and suggest the importance of addressing illness perceptions and activity stimulation in quality health care for IBD patients.


Assuntos
Adaptação Psicológica , Doença de Crohn/psicologia , Doenças Inflamatórias Intestinais/psicologia , Adulto , Estudos Transversais , Emoções , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Percepção , Qualidade de Vida , Inquéritos e Questionários
10.
Ned Tijdschr Geneeskd ; 160: D502, 2016.
Artigo em Holandês | MEDLINE | ID: mdl-27581866

RESUMO

Non-adherence occurs at any age, in all chronic diseases, and has a major impact on clinical outcomes. Non-adherence is primarily determined by perceptions of illness and medication beliefs. During puberty, adolescents attain independence from their parents and attach to their peers. This complicates successful self-management of chronic illness, because the adolescents avoid standing out from their peers. Discussion of barriers hindering successful self-management in adolescents can be promoted by seeing the patient alone, without the parents being present, and by acknowledging the patient's independence and responsibilities.


Assuntos
Comportamento do Adolescente/psicologia , Cooperação do Paciente/psicologia , Autocuidado/psicologia , Adolescente , Doença Crônica , Humanos , Relações Pais-Filho , Relações Médico-Paciente , Psicologia do Adolescente , Comportamento Social
11.
Scand J Rheumatol ; 45(3): 219-23, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-26471328

RESUMO

OBJECTIVES: To evaluate the nature and extent of aesthetic dissatisfaction in patients with hand osteoarthritis (OA), and to investigate its impact on daily life and its determinants. METHOD: Patients with primary hand OA, consulting secondary care, underwent physical examination for the number of joints with bony joint enlargements, soft tissue swelling and deformities, and radiographs. Questionnaires were filled in to measure pain and function (Functional Index for Hand Osteoarthritis, FIHOA), dissatisfaction with the appearance of the hands and its impact (aesthetic scales from the Michigan Hand Outcomes Questionnaire, MHQ), anxiety and depression (the Hospital Anxiety and Depression Scale, HADS), and illness perceptions (the revised Illness Perception Questionnaire, IPQ-R). Odds ratios (ORs) with 95% confidence intervals (CIs) were calculated using multivariate logistic regression as measures of relative risk for dissatisfaction with appearance or its impact, adjusted for age, sex, body mass index (BMI), and joint-specific abnormalities (bony joint enlargements, deformities, or radiographic severity), self-reported pain and function. RESULTS: Of 247 patients (mean age 61.6 years, 88% women), 63 (26%) were aesthetically dissatisfied and 33 (13%) reported impact on daily life due to dissatisfaction. Patients with joint-specific abnormalities were at higher risk for reporting dissatisfaction. Patients who reported impact also reported more depression and negative illness perceptions, independently from joint-specific abnormalities. CONCLUSIONS: Hand OA patients report aesthetic dissatisfaction with their hands regularly, especially in those with joint abnormalities. This dissatisfaction has a negative impact in a small group of patients who also reported more depression and negative illness perceptions. These results indicate the influence of psychosocial factors on outcome measures in patients with hand OA.


Assuntos
Ansiedade/psicologia , Atitude Frente a Saúde , Depressão/psicologia , Estética/psicologia , Deformidades Adquiridas da Mão/psicologia , Osteoartrite/psicologia , Satisfação do Paciente , Atividades Cotidianas , Idoso , Estudos Transversais , Feminino , Deformidades Adquiridas da Mão/diagnóstico por imagem , Deformidades Adquiridas da Mão/etiologia , Articulação da Mão/diagnóstico por imagem , Humanos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Análise Multivariada , Razão de Chances , Osteoartrite/complicações , Osteoartrite/diagnóstico por imagem , Medição da Dor , Qualidade de Vida , Radiografia , Índice de Gravidade de Doença , Inquéritos e Questionários
12.
Front Neurol Neurosci ; 35: 90-8, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-25273492

RESUMO

Medical humanities is the interdisciplinary field of humanities (literature, philosophy, ethics, history, and religion), social science (anthropology, cultural studies, psychology, and sociology), and the arts (literature, theater, film, and visual arts), and their application to medical education and practice. In this chapter, the concept of 'hysteria' is put into a medical humanities perspective. We review the concept of hysteria concisely. Two novels and one autobiographical story are used as material in order to study how 'hysteria' is represented in literary work. Madame Bovary (Gustave Flaubert), Hedda Gabler (Henrik Ibsen), and A Story in an Almost Classical Mode (Harold Brodkey) were searched for elements that are characteristic of hysteria. Excessive emotion, dramatics, attention-seeking behavior, physical symptoms of unknown and unidentifiable organic causes, self-centered behavior, and flirtatious behavior are the six elements used to operationalize hysteria. It was found that these elements were present in both a quantitative and qualitative manner in the literary works examined. Acknowledging some limitations and suggesting some research areas and clinical implications, we conclude that literary works are useful in analyzing concepts in medicine. Also, more generally, using literary works seems to have a positive impact on readers, healthcare providers, and researchers in the healthcare domain. Studying novels and related literary work contributes to the body of knowledge of medical humanities.


Assuntos
Autobiografias como Assunto , Histeria/história , Literatura Moderna/história , Medicina na Literatura , Idoso , Feminino , História do Século XIX , História do Século XX , Humanos , Histeria/fisiopatologia , Histeria/psicologia , Masculino , Ilustração Médica/história
13.
Fam Cancer ; 13(1): 83-91, 2014 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-23990281

RESUMO

Succinate dehydrogenase (SDH) mutation carriers are predisposed for developing paragangliomas. This study aimed to explore illness perceptions, risk perception and disease-related worry in these individuals. All consecutive SDHB and SDHD mutation carriers followed at the Department of Endocrinology of the Leiden University Medical Center (LUMC), a tertiary referral center, were eligible for inclusion. Illness perceptions were assessed using the validated Illness Perception Questionnaire-Revised and compared to reference populations. Risk perception and worry were measured by two items each and associations with illness perceptions explored. Twenty SDHB and 118 SDHD mutation carriers responded. Compared with various reference groups, SDH mutation carriers perceived less controllability of their condition. SDHB mutation carriers considered their condition to be less chronic in nature (p = 0.005) and perceived more personal (p = 0.018) and treatment control (p = 0.001) than SDHD mutation carriers. Mutation carriers with manifest disease reported more negative illness perceptions and a higher risk perception of developing subsequent tumors than asymptomatic mutation carriers. Illness perceptions, risk perception and disease-related worry were strongly correlated. Risk perception and disease-related worry may be assessed through illness perceptions. The development of interventions targeting illness perceptions may provide tools for genetic counseling.


Assuntos
Predisposição Genética para Doença/psicologia , Heterozigoto , Succinato Desidrogenase/genética , Adulto , Fatores Etários , Ansiedade/genética , Ansiedade/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Mutação , Paraganglioma/genética , Percepção , Inquéritos e Questionários
14.
J Clin Endocrinol Metab ; 98(9): 3608-14, 2013 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-23969183

RESUMO

CONTEXT: Paraganglioma (PGL) patients and succinate dehydrogenase (SDH) gene mutation carriers at risk for PGLs have a decreased quality of life (QoL). QoL may be affected by the strategy an individual uses when dealing with a stressful situation, ie, specific coping styles. Understanding the various approaches to coping may allow the development of targeted interventions to improve patient QoL. OBJECTIVE: The objective of the study was to assess coping styles in PGL patients and SDH mutation carriers. DESIGN: This was a cross-sectional study. SETTING: The study was conducted at a tertiary referral center. PATIENTS AND METHODS: Coping styles were assessed using the Utrecht Coping List. The results from the study cohort were compared with a control group and data derived from the literature. Potential differences in coping styles between the various SDH mutation carriers and PGL patients without an SDH mutation were explored. RESULTS: Of the 174 patients who responded, 122 were SDHD, 25 SDHB, and 2 SDHC mutation carriers. An additional 25 patients lacked an SDH mutation. They recruited 100 peers as controls. Compared with the general population, the study cohort was more avoidant of problems (P < .001) and reported less expression of emotion (P < .01). Compared with patients with other conditions, they sought more social support (P < .001). There were no significant differences in coping styles between the various categories of mutation carriers or PGL patients lacking a mutation. CONCLUSIONS: Coping styles of PGL patients and SDH mutation carriers differ from those of control and reference groups and include an avoidant coping style and a lack of emotional expression.


Assuntos
Adaptação Psicológica , Predisposição Genética para Doença/psicologia , Paraganglioma/psicologia , Qualidade de Vida/psicologia , Succinato Desidrogenase/genética , Adulto , Idoso , Estudos Transversais , Emoções , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Mutação , Paraganglioma/genética , Apoio Social , Inquéritos e Questionários
15.
Eur J Endocrinol ; 168(5): 689-97, 2013 May.
Artigo em Inglês | MEDLINE | ID: mdl-23392211

RESUMO

CONTEXT: Germline mutations in succinate dehydrogenase (SDH) genes predispose carriers for developing paragangliomas, and studies on their quality of life (QoL) are scarce. OBJECTIVES: The objectives of this study were to assess QoL in patients with paragangliomas (PGL), to evaluate long-term QoL, and to explore potential differences in QoL between SDH mutation carriers and paraganglioma patients without an SDH mutation. DESIGN: Cross-sectional, case-control study. SETTING: Tertiary referral center. SUBJECTS: ONE HUNDRED AND SEVENTY FOUR PARAGANGLIOMA PATIENTS WERE INCLUDED: 25 SDHB, two SDHC, and 122 SDHD mutation carriers and 25 patients without an SDH mutation. They provided 100 peers as control persons. Furthermore, patients were compared with age-adjusted reference populations. MAIN OUTCOME MEASURES: QOL WAS ASSESSED USING THREE VALIDATED HEALTH-RELATED QOL QUESTIONNAIRES: the Hospital Anxiety and Depression Scale, the Multidimensional Fatigue Index 20, and the Short Form 36. RESULTS: Patients reported a significantly impaired QoL compared with their own controls, mainly on fatigue and physical condition subscales. Compared with age-adjusted literature values, patients had significantly impaired scores on physical, psychological, and social subscales. A decreased QoL was mainly related to paraganglioma-associated complaints. There was no difference in QoL between the various SDH mutation carriers or paraganglioma patients without an SDH mutation. QoL in asymptomatic mutation carriers, i.e. without manifest disease, did not differ from QoL of the general population. Long-term results in 41 patients showed no alteration in QoL besides a reduced level of activity. CONCLUSION: QoL is decreased in paraganglioma patients but stable when measured over time.


Assuntos
Neoplasias das Glândulas Suprarrenais/psicologia , Paraganglioma/psicologia , Qualidade de Vida/psicologia , Neoplasias das Glândulas Suprarrenais/genética , Adulto , Idoso , Ansiedade/psicologia , Tumor do Corpo Carotídeo/genética , Tumor do Corpo Carotídeo/psicologia , Estudos de Casos e Controles , Estudos Transversais , Depressão/psicologia , Feminino , Humanos , Masculino , Proteínas de Membrana/genética , Pessoa de Meia-Idade , Nistagmo Patológico/psicologia , Paraganglioma/genética , Escalas de Graduação Psiquiátrica , Succinato Desidrogenase/genética , Inquéritos e Questionários
16.
Implement Sci ; 7: 58, 2012 Jun 30.
Artigo em Inglês | MEDLINE | ID: mdl-22747693

RESUMO

BACKGROUND: Total hip and knee arthroplasties are two of the most commonly performed procedures in orthopedic surgery. Different blood-saving measures (BSMs) are used to reduce the often-needed allogenic blood transfusions in these procedures. A recent large randomized controlled trial showed it is not cost effective to use the BSMs of erythropoietin and perioperative autologous blood salvage in elective primary hip and knee arthroplasties. Despite dissemination of these study results, medical professionals keep using these BSMs. To actually change practice, an implementation strategy is needed that is based on a good understanding of target groups and settings and the psychological constructs that predict behavior of medical professionals. However, detailed insight into these issuses is lacking. Therefore, this study aims to explore which groups of professionals should be targeted at which settings, as well as relevant barriers and facilitators that should be taken into account in the strategy to implement evidence-based, cost-effective blood transfusion management and to de-implement BSMs. METHODS: The study consists of three phases. First, a questionnaire survey among all Dutch orthopedic hospital departments and independent treatment centers (n = 99) will be conducted to analyze current blood management practice. Second, semistructured interviews will be held among 10 orthopedic surgeons and 10 anesthesiologists to identify barriers and facilitators that are relevant for the uptake of cost-effective blood transfusion management. Interview questions will be based on the Theoretical Domains Interview framework. The interviews will be followed by a questionnaire survey among 800 medical professionals in orthopedics and anesthesiology (400 professionals per discipline) in which the identified barriers and facilitators will be ranked by frequency and importance. Finally, an implementation strategy will be developed based on the results from the previous phases, using principles of intervention mapping and an expert panel. DISCUSSION: The developed strategy for cost-effective blood transfusion management by de-implementing BSMs is likely to reduce costs for elective hip and knee arthroplasties. In addition, this study will lead to generalized knowledge regarding relevant factors for the de-implementation of non-cost-effective interventions and insight in the differences between implementation and de-implementation strategies.


Assuntos
Artroplastia de Quadril , Artroplastia do Joelho , Transfusão de Sangue/economia , Medicina Baseada em Evidências/economia , Implementação de Plano de Saúde/métodos , Pesquisa sobre Serviços de Saúde/métodos , Padrões de Prática Médica , Artroplastia de Quadril/economia , Artroplastia do Joelho/economia , Transfusão de Sangue/métodos , Análise Custo-Benefício , Procedimentos Cirúrgicos Eletivos/economia , Eritropoetina/economia , Humanos , Países Baixos , Recuperação de Sangue Operatório/economia , Projetos de Pesquisa
17.
Respir Med ; 106(8): 1170-6, 2012 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-22579109

RESUMO

Given the high degree of psychosocial problems in patients with lung cancer, quality medical care would benefit from exploring and addressing and providing potential solutions for these problems. Patients with recently diagnosed non-small-cell lung cancer filled out a questionnaire that assessed illness perceptions and made a drawing of how they perceived their diseased lungs look. They also participated in an interview about the impact of lung cancer in their lives. Scores on the Brief Illness Perception Questionnaire indicated that patients score low on 'concern', 'emotional response' and 'timeline', indicating they hope to be cured from lung cancer. Patients drew the tumor larger than it is on the chest radiograph. The drawings are moderately accurate representations of the patients' lungs. In the interviews patients often expressed their hopes of being cured and how thinking positively would help. Patients who made a more accurate drawing of their lungs had less optimistic views about their prognosis. These views are more in line with the prognosis their physician would give them. However, few patients made an accurate drawing. This study contributes to a better insight into what patients believe and feel about their disease. Suggestions for taking patient perceptions into account are provided.


Assuntos
Arte , Atitude Frente a Saúde , Carcinoma Pulmonar de Células não Pequenas/psicologia , Neoplasias Pulmonares/psicologia , Adaptação Psicológica , Idoso , Idoso de 80 Anos ou mais , Carcinoma Pulmonar de Células não Pequenas/diagnóstico por imagem , Feminino , Humanos , Neoplasias Pulmonares/diagnóstico por imagem , Masculino , Pessoa de Meia-Idade , Países Baixos , Prognóstico , Psicometria , Qualidade de Vida , Radiografia
18.
Eur Neurol ; 67(2): 92-7, 2012.
Artigo em Inglês | MEDLINE | ID: mdl-22236661

RESUMO

BACKGROUND: Suffering a stroke has major implications for the patient. To understand human suffering, one should understand society. Pirandello described society as a higher entity than the individual, thereby justifying human adaptability to society. We explore a qualitative finding that suggests that social trends may influence how stroke patients prioritize aspects of their rehabilitation. METHODS: We compare a contemporary patient's experience of stroke recovery with that of a fictional character from the works of Luigi Pirandello. Both patients had two main residual symptoms: hemiparesis and aphasia. RESULTS: The rehabilitation priorities of the two patients differed, and appeared to reflect the contemporaneous demands of society. Mobility was prioritized in 1910; communication was prioritized in 2010. However, essential aspects of 'being a stroke patient' remained unchanged; both patients retained a sense of self and both coped emotionally by being hopeful. CONCLUSIONS: We conclude that stroke patients respond to society's contemporaneous demands and expectations. Currently, society demands participation in a large social environment and this is reflected in stroke patients' priorities. This analogy could enable medical professionals to better understand the social impact of stroke, and consequently offer appropriate interventions to improve rehabilitation outcomes for individual patients.


Assuntos
Drama/história , Medicina na Literatura , Mudança Social/história , Acidente Vascular Cerebral/história , Acidente Vascular Cerebral/psicologia , Adaptação Psicológica , Adulto , Pessoas Famosas , Feminino , História do Século XIX , História do Século XX , Humanos , Reabilitação do Acidente Vascular Cerebral
19.
Med Humanit ; 37(2): 123-6, 2011 Dec 01.
Artigo em Inglês | MEDLINE | ID: mdl-21816961

RESUMO

In this paper, the authors suggest an approach that may be helpful in teaching medical humanities to medical students. In the context of an honours class on medicine and literature, students (1) read a novel on an illness, (2) interviewed a patient with the medical condition described in the novel and (3) wrote an essay on the biomedical, narrative and literary aspects of these sources of information. The authors compared the story of Chekhov's literary protagonist Kovrin in The Black Monk with the personal story of patient H., who was diagnosed with schizophrenia. The narratives of the two patients were compared, based on Chekhov's literary narrative and the narrative of the patient. Both patients appeared to somehow regret losing their symptoms, following various psychiatric treatments. Both narratives show the ambivalence between the gain and loss that adequate psychiatric treatment may bring. Studying novels and other literary sources may help in understanding the story of the patient better, with associated improvements in various aspects of medical outcome. Reading literary fiction may help to increase an understanding of patients' emotions, experiences, cognitions and perspectives. It may also reduce the emotional distance between the self and the patient. The educational approach that was explored in the authors' honours class may be helpful to others when developing methods for teaching medical humanities to (medical) students.


Assuntos
Educação Médica/métodos , Empatia , Medicina na Literatura , Narração , Aceitação pelo Paciente de Cuidados de Saúde , Esquizofrenia , Cognição , Humanos , Entrevistas como Assunto , Literatura Moderna , Transtornos Psicóticos
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