RESUMO
Age-related macular degeneration (AMD) is the most common cause of irreversible visual impairment among people aged 50 years and older. Earlier research has indicated that the communication process between patients and healthcare professionals (HCPs) leaves considerable room for improvement in AMD care. Effective communication is essential to enhance trust in the professional and understanding of the diagnosis and treatment, and decrease anxiety and stress related to illness. We review patients' experiences, needs and preferences regarding information provision, communication style of the HCP and shared decision-making. We conducted a systematic search in PubMed, Embase, PsycINFO, CINAHL and Web of Science. Study quality was assessed using standard checklists of quality measures. Our search returned 31 eligible articles. Findings indicated current deficits in information provision for people with AMD. Patients were often ill-informed regarding the chronic character of the condition, treatment duration, nutrition, and visual aids and low vision rehabilitation. Many patients were not actively involved during the decision-making process. Altogether, patients with AMD are faced with challenges in terms of patient-HCP communication. Methods of providing information and discussing possible options for care need to be further investigated and improved for this patient group.
Assuntos
Degeneração Macular , Humanos , Degeneração Macular/terapia , Degeneração Macular/psicologia , Relações Médico-Paciente , ComunicaçãoRESUMO
BACKGROUND: Multimorbidity is a growing problem. The number and complexity of (non-)pharmaceutical treatments create a great burden for patients. Treatment burden refers to the perception of the weight of these treatments, and is associated with multimorbidity. Measurement of treatment burden is of great value for optimizing treatment and health-related outcomes. OBJECTIVE: We aim to translate and validate the Multimorbidity Treatment Burden Questionnaire (MTBQ) for use in the Dutch population with multimorbidity and explore the level of treatment burden. METHODS: Translating the MTBQ into Dutch included forward-backward translation, piloting, and cognitive interviewing (n = 8). Psychometric properties of the questionnaire were assessed in a cross-sectional study of patients with multimorbidity recruited from a panel in the Netherlands (n = 959). We examined item properties, dimensionality, internal consistency reliability, and construct validity. The level of treatment burden in the population was assessed. RESULTS: The mean age among 959 participants with multimorbidity was 69.9 (17-96) years. Median global NL-MTBQ score was 3.85 (interquartile range 0-9.62), representing low treatment burden. Significant floor effects were found for all 13 items of the instrument. Factor analysis supported a single-factor structure. The NL-MTBQ had high internal consistency (α = 0.845), and provided good evidence on the construct validity of the scale. CONCLUSION: The Dutch version of the 13-item MTBQ is a single-structured, valid, and compact patient-reported outcome measure to assess treatment burden in primary care patients with multimorbidity. It could identify patients experiencing high treatment burden, with great potential to enhance shared decision-making and offer additional support.
RESUMO
BACKGROUND: The outbreak of COVID-19 had a significant impact on routines and continuity of professional care. As frequent users of this professional care, especially for people with chronic diseases this had consequences. Due to barriers in access to healthcare, an even greater appeal was made on the self-management behaviors of this group. In the present study, we aim to investigate the extent to which self-management changed during the recent pandemic, and which factors contributed to these changes. METHODS: The Dutch 'National Panel of people with Chronic Illness or Disability' was used to collect self-reported data of people with at least one chronic disease. Self-management was assessed with the Partners in Health questionnaire at two time points: before the crisis in 2018 and during the second wave of crisis in Autumn 2020. Paired t-tests were used to analyze changes in self-management. Potential associating factors on three levels - patient, organization and environment - were assessed in 2020 and their impact on self-management changes was tested with multinomial logistic regression. RESULTS: Data from 345 panel members was available at two time points. In the majority of people, self-management behaviors were stable (70.7%). About one in seven experienced improved self-management (15.1%), and a similar proportion experienced deteriorated self-management (14.2%). Sex, physical disability, mental health and daily stressors due to COVID-19 (patient level), changes in healthcare access (organization level), and social support (environment level) were significantly associated with experienced changes in self-management. CONCLUSIONS: People with chronic diseases experienced different trajectories of self-management changes during COVID-19. We need to be aware of people who seem to be more vulnerable to a healthcare crisis and report less stable self-management, such as those who experience mental health problems or daily stressors. Continuity of care and social support can buffer the impact of a healthcare crisis on self-management routines of people with chronic diseases.
Assuntos
COVID-19 , Autogestão , Humanos , Pandemias , Estudos Longitudinais , Atenção à Saúde , Doença CrônicaRESUMO
BACKGROUND: Age-related macular degeneration (AMD) is one of the principal causes of irreversible visual impairment in the older adult population. Recent evidence indicates that there are signs of undertreatment and overtreatment, underdiagnosis and insufficient information provision in AMD care. Shared decision-making (SDM) can aid information sharing between patients and health professionals and enhances high-quality care. This research aimed to gain insight into patients' and professionals' views on SDM in AMD care. METHODS: Semi-structured interviews were conducted with 20 patients with AMD and 19 health professionals in June and July 2020. Participants were recruited through hospitals, professional and patient associations and (social) networks. Sample representativeness was ensured in terms of sociodemographic and disease characteristics for patients, and profession-related characteristics for health professionals. Interviews were analysed according to a predetermined coding framework. RESULTS: Although SDM is receiving attention in AMD care, health professionals and patients experienced barriers in making shared decisions. The most common barriers reported included limitations in treatment options, time constraints, strict treatment guidelines and patients' comorbidity. Furthermore, most patients indicated that they were not (fully) informed about all aspects of AMD trajectory, such as the possibility to discontinue therapy or the long-term and invasive character of treatment. Some patients expressed the need for a more empathic and person-centred communication style from their health professional. CONCLUSION: The concerns raised by patients and health professionals suggest that there is room for improvement in delivery of SDM in AMD care. Findings from this study indicate that information provision and communication can be improved.
Assuntos
Degeneração Macular , Participação do Paciente , Idoso , Tomada de Decisões , Tomada de Decisão Compartilhada , Humanos , Degeneração Macular/diagnóstico , Degeneração Macular/terapia , Pesquisa QualitativaRESUMO
BACKGROUND: Countries are adapting their health and social care systems to better meet the needs of growing populations with (multiple) chronic conditions. To guide this process, assessment of the 'patient experience' is becoming increasingly important. For this purpose, the Person-Centred Coordinated Care Experience Questionnaire (P3CEQ) was developed in the United Kingdom, and translated into several languages. AIM: This study aimed to assess the internal and construct validity of the Dutch P3CEQ to capture the experience of person-centred coordinated care of people with chronic conditions in the Netherlands. PARTICIPANTS AND METHODS: Adults with chronic conditions (N = 1098) completed the Dutch P3CEQ, measures of health literacy and patient activation, and reported the use and perceived quality of care services. Data analysis included Principal Component and reliability analysis (internal validity), analysis of variance and Student's T-tests (construct validity). RESULTS: The two-component structure found was pretty much the same as in the UK validation study. Sociodemographic correlates also resembled those found in the United Kingdom. Women, persons who were less educated, less health-literate or less activated experienced less person-centred coordinated care. P3CEQ scores correlated positively with general practitioner performance scores and quality ratings of the total care received. CONCLUSION: The Dutch P3CEQ is a valid instrument to assess the experience of person-centred coordinated care among people with chronic conditions in the Netherlands. Awareness of inequity and more attention to communication skills in professional training are needed to ensure that care professionals better recognize the needs of women, lower educated or less health-literate persons, and improve their experiences of care. PATIENT CONTRIBUTION: The P3CEQ has been developed in collaboration with a range of stakeholders. Eighteen persons with (multiple) chronic conditions participated as patient representatives and codesign experts in (four) codesign workshops. Other patient representatives participated in cognitive testing of the English-language instrument. The usability of the P3CEQ to capture the experience of person-centred coordinated care of older persons has been examined by interviewing 228 older European service users, including 13 living in the Netherlands, as part of the SUSTAIN project. More than a thousand persons with chronic conditions participated in the validation study of the Dutch P3CEQ.
Assuntos
Idioma , Assistência Centrada no Paciente , Adulto , Idoso , Idoso de 80 Anos ou mais , Doença Crônica , Feminino , Humanos , Países Baixos , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
Introduction: Measuring patient experiences provides important insight into the quality of Dutch healthcare. The current research shows how quality of care has changed over the years and how it correlates with changes in healthcare and health during the COVID-19-pandemic. Method: Patient experiences were collected using satisfaction ratings and the quality indicator PREM Chronic Care, among a representative group of people with a chronic disease. Trend analyses with repeated measurements (2016-2020) were performed and differences between subgroups were tested with Mann-Whitney U tests. Results: Quality of care ratings are mainly positive, also during the COVID-19-pandemic in autumn of 2020. In that year, people are the least satisfied with the coordination between healthcare providers and with preventive healthcare of their illness (64% and 67% is satisfied respectively). Trend analyses show that satisfaction with preventive healthcare has declined and satisfaction with shared decision-making has fluctuated over the years. People who experience consequences for their health(care) during the COVID-19-pandemic, are less satisfied with different aspects of healthcare quality than those who experience no consequences. Conclusion: It seems important to pay attention to patient experiences about healthcare processes, with emphasis on additional information for prevention, support for changes in health and treatment during the COVID-19-pandemic, and good coordination between healthcare providers.
RESUMO
BACKGROUND: This study aimed to examine associations between self-management abilities and digital participation among community-dwelling older adults with chronic conditions in the Netherlands. METHODS: The study utilized a cross-sectional design. Community-dwelling older adults were sampled from a Dutch nationwide panel study performed in October and November of 2019. We selected all adults of 65 years and above who had one or more chronic diseases (n = 1,656). Self-management was measured by six abilities (e.g., investing in resources for long-term benefits and taking care of a variety of resources), whereas digital participation was estimated with the frequency of four social internet uses (e.g., using social network websites and calling digitally). RESULTS: When predicting self-management abilities from digital participation, hierarchical multiple regression analysis determined statistically significant and positive relationships, in particular for e-mailing (ß = 0.21; p < .001) and meeting new people online (ß = 0.07; p < .05). Correlation analyses showed that highest associations were found between internet usage and the self-management abilities 'taking initiative' (r = .23; p < .001) and 'being self-efficacious' (r = .21; p < .001). Moreover, the study confirmed that higher age (ß = -0.13; p < .001) and increased severity of disability (ß = -0.12; p < .01) negatively impact abilities for self-management. CONCLUSIONS: These findings suggest that internet usage and self-management abilities are positively related in the older adult population. Further research should be undertaken to examine the links between self-management abilities and digital participation more closely.
Assuntos
Vida Independente , Autogestão , Idoso , Doença Crônica , Estudos Transversais , Etnicidade , Humanos , Participação SocialRESUMO
BACKGROUND: This study aims to describe the validation and optimization of a new instrument designed to comprehensively measure and evaluate the quality of care in nursing homes; the Quality Evaluation Questionnaires for Nursing Homes (QEQ-NH). This instrument comprises several questionnaires on the perceived quality of care for various perspectives (e.g. clients, family and professional caregivers) and covers eight themes of the national quality framework for nursing home care in the Netherlands. METHODS: Data were collected in six nursing homes between September 2017 and June 2018, among 359 residents, 48 family caregivers and 648 professional caregivers who completed a subgroup-specific questionnaire of the QEQ-NH. Construct and criterion validity of the three questionnaires were tested with item- and scale analyses. Content validity of the questionnaires was tested in cognitive interviews with 20 participants (7 residents, 5 family caregivers and 8 professional caregivers). RESULTS: Psychometric analyses confirmed the multidimensionality and reliability of the three questionnaires, and the cognitive interviews showed various possibilities for further optimization of the instrument. Construct, criterion and content validity of the three questionnaires ranged from acceptable to good. Cronbach's alphas were > .70 for almost all scales. More than half of the items were candidate for optimization according to the cognitive interviews, mainly due to clarity or knowledge problems, and the questionnaires of the QEQ-NH were optimized accordingly. CONCLUSIONS: The Quality Evaluation Questionnaires for Nursing Homes (QEQ-NH) provide a solid basis to measure the quality of nursing home care, by covering the national quality themes and by integrating the various perspectives of all parties involved. With real-time feedback, the instrument provides the management and care teams with information to select possibilities or areas for improvement and to continuously monitor the effects of quality improvement in nursing homes.
Assuntos
Cuidadores , Casas de Saúde , Humanos , Psicometria , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
AIM: Living with a chronic condition or a disability at older age impacts social participation. Social connections and social activities seem interrelated leading to heterogeneous patterns in social participation. The aim of this study was to identify a typology in social participation among older adults with disabilities, and to relate this typology to their background characteristics and well-being measures. METHODS: A total of 1775 older adults with disabilities or chronic conditions aged 65-97 were sampled from a nationwide panel study in the Netherlands. Social participation was assessed by various measures related to social connections, social informal activities, voluntary work, effort to increase social participation, and online social participation. A latent class analysis was carried out to identify a typology of social participation. Differences between these classes were explored with multinomial regression analyses and pairwise comparisons. RESULTS: Four classes were found: social withdrawers (22.5%, nâ¯=â¯399), proximate social dwellers (14.5%, nâ¯=â¯257), moderately active social dwellers (37.2%, nâ¯=â¯660) and pro-active social dwellers (25.9%, nâ¯=â¯459). Background characteristics, such as living alone and severity of disability, differed significantly among classes. Regarding well-being measures, it appeared that pro-active social dwellers had the most positive scores. Social withdrawers were most prone to reduced life satisfaction and health related quality of life and increased loneliness and experienced participation restrictions. CONCLUSIONS: A typology with four patterns based on a wide spectrum of social participation aspects in older adults with disabilities was identified. This typology may help to assess the risk for reduced well-being of older adults with disabilities.
Assuntos
Pessoas com Deficiência/estatística & dados numéricos , Solidão/psicologia , Qualidade de Vida , Comportamento Social , Participação Social , Idoso , Idoso de 80 Anos ou mais , Doença Crônica , Pessoas com Deficiência/psicologia , Feminino , Humanos , Análise de Classes Latentes , Masculino , Países BaixosRESUMO
OBJECTIVE: Severe fatigue is highly prevalent in various chronic diseases. Disease-specific fatigue models have been developed, but it is possible that fatigue-related factors in these models are similar across diseases. The purpose of the current study was to determine the amount of variance in fatigue severity explained by: (a) the specific disease, (b) factors associated with fatigue across different chronic diseases (transdiagnostic factors), and (c) the interactions between these factors and specific diseases. METHOD: Data from 15 studies that included 1696 patients with common chronic diseases and disorders that cause long-term disabilities were analyzed. Linear regression analysis with the generalized least-squares technique was used to determine fatigue-related factors associated with fatigue severity, that is, demographic variables, health-related symptoms and psychosocial variables. RESULTS: Type of chronic disease explained 11% of the variance noted in fatigue severity. The explained variance increased to 55% when the transdiagnostic factors were added to the model. These factors were female sex, age, motivational and concentration problems, pain, sleep disturbances, physical functioning, reduced activity and lower self-efficacy concerning fatigue. The predicted variance increased to 61% when interaction terms were added. Analysis of the interactions revealed that the relationship between fatigue severity and relevant predictors mainly differed in strength, not in direction. CONCLUSIONS: Fatigue severity can largely be explained by transdiagnostic factors; the associations vary between chronic diseases in strength and significance. This suggests that severely fatigued patients with different chronic diseases can probably benefit from a transdiagnostic fatigue-approach which focuses on individual patient needs rather than a specific disease. (PsycINFO Database Record
Assuntos
Doença Crônica/psicologia , Fadiga/psicologia , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
OBJECTIVE: To identify mediators of the beneficial effect of cognitive-behavioral therapy (CBT) on fatigue severity in chronically fatigued patients with Type 1 diabetes. METHOD: We performed secondary analyses of a randomized controlled trial testing the efficacy of CBT. Primary outcome was fatigue severity assessed with the Checklist Individual Strength, subscale fatigue severity. We used multiple mediation analysis to determine potential mediators of the treatment effect. Proposed mediators were symptom focusing, self-efficacy concerning fatigue and pain, perceived activity, sleep disturbances, confidence in diabetes self-care, diabetes distress and discrepancy regarding social support. Actigraphy was used to assess the level of physical activity. The analysis was repeated with depressive symptoms as potential mediator to test whether this caused a change in the other fatigue-related mediators. RESULTS: The effect of CBT on fatigue severity was partly mediated by a change in symptom focusing (-1.39, 95% CI [-3.32, -0.19]), fear avoidance (-1.10, 95% CI [-2.49, -0.22]), self-efficacy concerning fatigue (-1.95, 95% CI [-4.51, -0.40]), and perceived physical activity (-2.44, 95% CI [-4.53, -1.07]). Depressive symptoms were also a mediator (-1.22, 95% CI [-2.56, -0.38]), but the aforementioned fatigue-perpetuating factors still explained part of the treatment effect. CONCLUSIONS: Changes in cognitions about fatigue and activity, and a change in depressive symptoms partly mediated the treatment effect of CBT on fatigue severity in Type 1 diabetes. The mediators found are similar to those explaining the effects of CBT in other chronic diseases. This provides knowledge for the development of more effective and efficient interventions for fatigue. (PsycINFO Database Record
Assuntos
Terapia Cognitivo-Comportamental , Diabetes Mellitus Tipo 1/complicações , Síndrome de Fadiga Crônica/terapia , Fadiga/terapia , Autoeficácia , Apoio Social , Adulto , Diabetes Mellitus Tipo 1/psicologia , Exercício Físico , Fadiga/complicações , Fadiga/diagnóstico , Fadiga/psicologia , Síndrome de Fadiga Crônica/complicações , Síndrome de Fadiga Crônica/diagnóstico , Síndrome de Fadiga Crônica/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Resultado do TratamentoRESUMO
BACKGROUND: Fatigue in type 1 diabetes is prevalent and persistent, but so far, no evidence-based treatments are available. We aimed to investigate the efficacy of cognitive behavioural therapy (CBT) in reducing fatigue severity in patients with type 1 diabetes. METHODS: We did a multicentre randomised controlled trial at one university medical centre and four large teaching hospitals in the Netherlands. Eligible patients were aged 18-70 years and had type 1 diabetes for at least 1 year and chronic fatigue for at least 6 months. We randomly assigned patients (1:1) to CBT or waiting list using computer-generated blocked randomisation, stratified by type of enrolment. The CBT intervention (Dia-Fit) was given for 5 months in blended form, consisting of face-to-face and web-based sessions. The primary outcome was fatigue severity assessed 5 months after randomisation, directly after the intervention or waiting list period, with the Checklist Individual Strength fatigue severity subscale. Secondary outcomes were functional impairment (assessed with the total score of the Sickness Impact Profile-8), glycaemic control (HbA1c), and glucose variability. Analyses were done by intention to treat. This trial is registered with the Nederlands Trial Register, number NTR4312. FINDINGS: Between Feb 6, 2014, and March 24, 2016, we randomly assigned 120 eligible patients to either CBT (n=60) or waiting list (n=60), all of whom were included in the intention-to-treat analyses. Compared with patients in the waiting list group, those in the CBT group had significantly lower fatigue severity scores (mean difference 13·8, 95% CI 10·0-17·5; p<0·0001) and significantly lower scores for functional impairment (mean difference 513, 95% CI 340-686; p<0·0001) after 5 months. HbA1c and glucose variability did not change after treatment and there was no difference between groups. Five patients in the CBT group and seven in the waiting list group reported adverse events; none were deemed to be related to the study intervention. INTERPRETATION: Although our findings need to be confirmed in larger and longer-term studies, they suggest that CBT can effectively reduce fatigue severity and functional impairment in type 1 diabetes. FUNDING: Dutch Diabetes Research Foundation (Diabetes Fonds).
Assuntos
Terapia Cognitivo-Comportamental , Diabetes Mellitus Tipo 1/complicações , Síndrome de Fadiga Crônica/terapia , Adolescente , Adulto , Idoso , Síndrome de Fadiga Crônica/complicações , Feminino , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
OBJECTIVE: To investigate the prevalence, location and severity of pain, as well as its association with psychosocial and clinical variables and its impact on functional impairment in fatigued patients with type 1 diabetes. METHODS: 120 severely fatigued patients with type 1 diabetes completed questionnaires on pain (McGill Pain Questionnaire, MPQ; Short Form Health Survey subscale bodily pain, SF-36), fatigue severity (Checklist Individual Strength subscale fatigue severity, CIS), depressive symptoms (Beck Depression Inventory Primary Care, BDI-PC) and functional impairment (Sickness Impact Profile-8, SIP-8). HbA1c and diabetes-related complications were assessed, and physical activity was measured using actigraphy. RESULTS: 72% of patients reported pain. Muscle, joint and back pain, and headache were most common. Patients with pain were more often female (69 vs. 44%, p=0.013), reported more complications (mean number: 0.7 vs. 0.3, p=0.009) and scored higher on the BDI-PC measuring depressive symptoms (mean score: 3.8 vs. 2.3, p=0.002), compared to patients without pain. Pain was associated with diabetes duration, the number of complications, fatigue severity, depressive symptoms and functional impairment, but not with HbA1c or physical activity. Of patients with pain, 26% reported a high impact of pain. Both pain (ß=-0.31, t(117)=-3.39, p=0.001) and fatigue severity (ß=0.18, t(117)=2.04, p=0.044) contributed to functional impairment. CONCLUSION: Pain was highly prevalent in fatigued patients with type 1 diabetes, although pain impact and severity were relatively low, and the location of some pain symptoms was similar to the location of those in the general population. As pain is related to fatigue and contributes independently to functional impairment, fatigue interventions should address pain.
Assuntos
Complicações do Diabetes/epidemiologia , Diabetes Mellitus Tipo 1/epidemiologia , Fadiga/epidemiologia , Medição da Dor/métodos , Dor/epidemiologia , Adulto , Idoso , Complicações do Diabetes/diagnóstico , Diabetes Mellitus Tipo 1/diagnóstico , Fadiga/diagnóstico , Feminino , Inquéritos Epidemiológicos/métodos , Humanos , Masculino , Pessoa de Meia-Idade , Dor/diagnóstico , Dor/psicologia , Prevalência , Escalas de Graduação Psiquiátrica , Inquéritos e QuestionáriosRESUMO
AIMS: To prospectively identify the course of severe fatigue, its predictors and the relationship with HbA1c in patients with type 1 diabetes. METHODS: 214 adult patients completed questionnaires on fatigue severity and fatigue-related factors at baseline. HbA1c was retrieved from medical records. After 43months, fatigue severity and HbA1c were reassessed in 194 patients. A logistic regression analysis was used to determine predictors of severe fatigue at follow-up with various cognitive-behavioral and clinical factors as potential predictors. The relationship between fatigue and HbA1c was investigated in a sub-analysis by differentiating between patients with suboptimal glucose control [HbA1c>7% (53mmol/mol)] and optimal glucose control [HbA1c⩽7% (53mmol/mol)]. RESULTS: The prevalence of severe fatigue was 40% at baseline and 42% at follow-up. In three out of four severely fatigued patients at baseline (76%), severe fatigue persisted over time. More depressive symptoms, more pain, sleep disturbances, lower self-efficacy concerning fatigue, less confidence in diabetes self-care, more fatigue severity at baseline and more diabetes complications predicted severe fatigue at follow-up. Over time, HbA1c at baseline was positively associated with fatigue severity at follow-up in both groups (suboptimal glucose control: r=.18, p<.05; optimal glucose control: r=.09, p<.05). CONCLUSIONS: About three quarters of fatigued[corrected] patients with type 1 diabetes suffer from persistent fatigue. Aside from the number of diabetes complications, no clinical factors explained the persistence of fatigue. HbA1c and fatigue were weakly associated in a sub-analysis. Since the strongest predictors of severe fatigue were cognitive-behavioral factors, behavioral interventions might be effective in decreasing fatigue.
Assuntos
Diabetes Mellitus Tipo 1/complicações , Fadiga/etiologia , Hemoglobinas Glicadas/metabolismo , Biomarcadores/sangue , Glicemia/metabolismo , Diabetes Mellitus Tipo 1/sangue , Fadiga/diagnóstico , Fadiga/epidemiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos/epidemiologia , Estudos Prospectivos , Índice de Gravidade de Doença , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Fatigue is frequently reported by patients with type 1 diabetes mellitus. A recent study showed that 40 % of patients experienced severe fatigue that lasted for more than six months and was accompanied by substantial impairments in daily functioning. Currently, there is no effective treatment available for chronic fatigue in patients with type 1 diabetes. Cognitive behaviour therapy aimed at cognitions and behaviours that perpetuate fatigue is effective in reducing fatigue in other chronic diseases. Recent research showed that these cognitions and behaviours are also potential determinants of fatigue in type 1 diabetes. We designed Dia-Fit, a web-based cognitive behaviour therapy for severe and chronic fatigue in patients with type 1 diabetes. This patient-tailored intervention is aimed at reducing fatigue by changing cognitions and behaviours assumed to maintain fatigue. The efficacy of Dia-Fit will be investigated in this study. METHODS/DESIGN: A randomised controlled trial will be conducted in 120 patients with type 1 diabetes who are chronically and severely fatigued. Patients will be randomised to a treatment or waiting list group. The treatment group will receive Dia-Fit, a blended care therapy consisting of up to eight internet modules and face-to-face sessions with a therapist during a five-month period. The treatment will be tailored to the fatigue-maintaining cognitions and behaviours that are relevant for the patient and are determined at baseline. The waiting list group will receive Dia-Fit after a waiting period of five months. The primary outcome measure is fatigue severity. Secondary outcome measures are functional impairment and glucose control determined by haemoglobin A1c and blood glucose variability. DISCUSSION: To our knowledge, this is the first study investigating the efficacy of a cognitive behavioural intervention for chronic fatigue in patients with type 1 diabetes. TRIAL REGISTRATION: Dutch trial register NTR4312 (10 December 2013).
Assuntos
Terapia Cognitivo-Comportamental/métodos , Diabetes Mellitus Tipo 1/complicações , Fadiga/terapia , Internet , Terapia Assistida por Computador/métodos , Adolescente , Adulto , Idoso , Biomarcadores/sangue , Glicemia/metabolismo , Doença Crônica , Protocolos Clínicos , Diabetes Mellitus Tipo 1/sangue , Diabetes Mellitus Tipo 1/diagnóstico , Fadiga/diagnóstico , Fadiga/etiologia , Fadiga/fisiopatologia , Fadiga/psicologia , Feminino , Hemoglobinas Glicadas/metabolismo , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos , Projetos de Pesquisa , Índice de Gravidade de Doença , Inquéritos e Questionários , Fatores de Tempo , Resultado do Tratamento , Adulto JovemRESUMO
BACKGROUND: The Eating Disorder Questionnaire-Online (EDQ-O) is an online self-report questionnaire, which was developed specifically to provide a DSM-IV-TR classification of anorexia nervosa (AN), bulimia nervosa (BN), binge-eating disorder (BED), and eating disorder not otherwise specified (EDNOS), without using a face-to-face clinical interview. OBJECTIVE: The purpose of the present study was to examine the psychometric quality of the EDQ-O. METHODS: The validity of the EDQ-O was determined by examining the agreement with the diagnoses obtained from the Longitudinal, Expert, and All DATA (LEAD) standard. Participants included 134 new patients of a specialist center for eating disorders located in the Netherlands. RESULTS: Assessment of the validity of the EDQ-O yielded acceptable to good AUC (area under the receiver operating characteristic curve) values with a range from 0.72 to 0.83. Most other diagnostic efficiency statistics were also good except for a low sensitivity for AN (0.44), a low positive predictive value for BN (0.50), and a relatively low sensitivity for BED (0.66). CONCLUSION: The results of the present study suggest that the EDQ-O performs acceptably as a diagnostic instrument for all DSM-IV-TR eating disorder classifications. However, suggestions are made to further improve the validity of the EDQ-O.