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1.
Medicine (Baltimore) ; 99(51): e23867, 2020 Dec 18.
Artigo em Inglês | MEDLINE | ID: mdl-33371172

RESUMO

OBJECTIVE: To explore the effect of modular transitional nursing intervention on the improvement of self-management of the patients with cancer pain. METHOD: This study will be conducted from March 2021 to May 2022 at Affiliated Hospital of Beihua University. The experiment was granted through the Research Ethics Committee of Affiliated Hospital of Beihua University (4348-019). Eighty patients are analyzed in our study. The patients will be included if they are between 18 and 70 years old and are diagnosed with cancer, the pain intensity score on moderate level, the pain lasts for more than 3 days, and the patients who have signed the written informed consent. While the patients will be excluded if they have a documented history of drug or alcohol abuse, and patients with limited performance, and patients have a surgery in the past 3 days. The primary result mainly expresses as intergroup differences in self-management disorders (Barriers Questionnaire-II) associated with the cancer pain. And the secondary results include the quality of life (QOL) and pain intensity. All the analyses are implemented with SPSS for Windows Version 20.0. RESULTS: Table 1 will show the clinical outcomes between the 2 groups. CONCLUSION: A modular transitional nursing intervention appears to reduce pain in cancer patients. TRIAL REGISTRATION NUMBER: researchregistry6262.


Assuntos
Neoplasias/enfermagem , Cuidados de Enfermagem/normas , Manejo da Dor/normas , Autogestão/psicologia , Protocolos Clínicos , Humanos , Neoplasias/psicologia , Cuidados de Enfermagem/métodos , Manejo da Dor/métodos , Manejo da Dor/psicologia , Autogestão/métodos , Resultado do Tratamento
2.
Eur Rev Med Pharmacol Sci ; 24(21): 11402-11408, 2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-33215462

RESUMO

OBJECTIVE: The study aimed to explore the best follow-up management strategy for patients undergoing peritoneal dialysis (PD) during the novel coronavirus pneumonia (NCP) epidemic. PATIENTS AND METHODS: Patients undergoing PD who were followed up during the NCP epidemic by our hospital were enrolled in this study. Because of the need to control the epidemic, a follow-up system was established during the epidemic period, with WeChat, QQ, and the telephone as the main methods of communication. Outpatient and emergency follow-ups were carried out to ensure the safety of dialysis and the prevention and control of the epidemic. The follow-up strategy included response measures related to the epidemic situation, prevention of peritonitis related to PD, water and salt control, exercise guidance, and psychological care. According to the patient's condition, the appointment system was implemented, with one consulting room and one process for each patient. The emergency patients were isolated in accordance with the epidemic situation. RESULTS: Since January 2020, among the 580 patients undergoing PD who were followed up in our department and their families, none had NCP infection. During the epidemic period, the standard hemoglobin level and the inpatient rate decreased. Complications related to PD, such as peritonitis, cardiovascular complications caused by volume overload, and pulmonary infection, did not significantly increase, and the withdrawal rate and mortality rate decreased compared with those in the same period last year. CONCLUSIONS: The patient follow-up strategy during the epidemic period had a significant positive effect on preventing and controlling the epidemic. Furthermore, during the epidemic period, encouraging patients and caregivers to pay attention to protection at home, avoid going out, strengthen self-management, and other measures were beneficial to the control of kidney disease itself, which is worth promoting. The close relationship between doctors and patients during the epidemic had a positive effect on the occurrence of complications related to patients undergoing PD.


Assuntos
Assistência ao Convalescente/métodos , Infecções por Coronavirus/prevenção & controle , Hemodiálise no Domicílio/normas , Falência Renal Crônica/terapia , Pandemias/prevenção & controle , Diálise Peritoneal/normas , Pneumonia Viral/prevenção & controle , Assistência ao Convalescente/normas , Betacoronavirus/patogenicidade , Cuidadores/psicologia , Controle de Doenças Transmissíveis/normas , Infecções por Coronavirus/epidemiologia , Infecções por Coronavirus/transmissão , Infecções por Coronavirus/virologia , Seguimentos , Hemodiálise no Domicílio/efeitos adversos , Hemodiálise no Domicílio/psicologia , Humanos , Educação de Pacientes como Assunto , Diálise Peritoneal/efeitos adversos , Diálise Peritoneal/psicologia , Peritonite/epidemiologia , Peritonite/etiologia , Relações Médico-Paciente , Pneumonia Viral/epidemiologia , Pneumonia Viral/transmissão , Pneumonia Viral/virologia , Guias de Prática Clínica como Assunto , Encaminhamento e Consulta/normas , Autogestão/psicologia , Telemedicina/normas , Resultado do Tratamento
3.
Medicine (Baltimore) ; 99(44): e22862, 2020 Oct 30.
Artigo em Inglês | MEDLINE | ID: mdl-33126330

RESUMO

The aim of this study was to assess the levels of self-perceived burden (SPB) and self-management behavior in elderly stroke survivors during the first 3 months after acute stroke, and to explore the correlation between them.A total of 203 consecutive hospitalized elderly patients diagnosed with stroke were recruited. Self-perceived Burden Scale and Stroke Self-management Scale in 1 month (T1) and 3 months (T2) post-stroke were assessed and compared.The score of SPB in elderly stroke survivors was 28.96 ±â€Š5.50 and 27.25 ±â€Š6.17 at T1 and T2, respectively. Stroke self-management scale scored 165.93 ±â€Š9.82 at T1 and 167.29 ±â€Š10.60 at T2. In the first 3 months post-stroke, the physical burden was dominant (T1 14.73 ±â€Š3.07, T2 14.40 ±â€Š3.13), and the behavior of stroke symptoms and signs monitoring (T1 27.58 ±â€Š6.56, T2 28.64 ±â€Š6.43) and rehabilitation exercise management (T1 21.40 ±â€Š3.28, T2 20.74 ±â€Š3.15) was the worst. SPB was negatively correlated with self-management behavior (T1 r = -.202, T2 r = -.511).Elderly stroke survivors experienced a medium level of SPB and self-management behavior in the first 3 months post-stroke. There is a positive relationship between reduced SPB and improved self-management behavior. Addressing the characteristics and correlations as well as development of targeted interventions for SPB decreasing is beneficial to improving self-management behavior for elderly survivors.


Assuntos
Efeitos Psicossociais da Doença , Autoimagem , Autogestão/psicologia , Reabilitação do Acidente Vascular Cerebral/psicologia , Idoso , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Psicometria/instrumentação , Psicometria/métodos , Autogestão/métodos , Autogestão/estatística & dados numéricos , Acidente Vascular Cerebral/psicologia , Acidente Vascular Cerebral/terapia , Reabilitação do Acidente Vascular Cerebral/métodos , Reabilitação do Acidente Vascular Cerebral/estatística & dados numéricos , Sobreviventes/psicologia , Sobreviventes/estatística & dados numéricos
4.
Can Fam Physician ; 66(10): 745-747, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-33077454
5.
Eur J Endocrinol ; 183(6): 551-559, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-33055299

RESUMO

Introduction: The low prevalence of pituitary diseases makes patient autonomy crucial, and self-management programs should be more common. Objectives: To assess the efficacy of an education program for patients with pituitary diseases in terms of patients' quality of life, satisfaction and goal attainment. Design and methods: Adult patients with pituitary disorders were recruited in a tertiary referral center and chose at least three of eight possible sessions on various topics, from disease management to psychosocial issues. Patients were included if they attended at least three sessions between 2012 and 2016 and completed the initial, final, and follow-up questionnaires. Data on quality of life (SF36), satisfaction and goal attainment were analyzed. Results: Fifty-three patients were included (33 women; mean age, 53.5 years). There were a significant quality of life improvements in terms of physical and psychic limitation scores at the final assessment that persisted at follow-up evaluation. Most patients reached their objectives, especially those on sharing experiences and improving autonomy and self-confidence. More than half set new objectives at the end of the program, the most popular one being to reinforce their knowledge of their pituitary disease, its evolution and treatment (17.1% of patients). The mean overall satisfaction score was 3.75/4. At follow-up evaluation, patients reported improved self-management of pituitary disease (3.6/5) and improved self-efficacy (3.8/5). Conclusion: Individualizing the educational objectives of patients with pituitary disease improves the way they live with their disease. If confirmed in other cohorts, this approach could become the gold standard for education programs in rare endocrine diseases.


Assuntos
Educação de Pacientes como Assunto/normas , Doenças da Hipófise/psicologia , Doenças da Hipófise/terapia , Autogestão/psicologia , Adulto , Idoso , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Educação de Pacientes como Assunto/métodos , Projetos Piloto , Doenças da Hipófise/diagnóstico , Qualidade de Vida/psicologia , Autogestão/métodos , Inquéritos e Questionários/normas
6.
Pflege ; 33(5): 319-328, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32996864

RESUMO

The process of medication self-management: a model revision based on a qualitative secondary analysis Abstract. Background: For safe and effective use of medication, specific skills are required which are inherent in the concept of medication self-management. In order to provide adequate counseling, it is important for registered nurses, physicians and pharmacists to know how medication self-management works in everyday life for the people affected. This process was presented in 2013 in a first conceptual model by Bailey et al. Aim: The purpose of this study was to enhance the empirical foundation of the existing model and to gain an in-depth theoretical understanding of the process of medication self-management. METHOD: A qualitative secondary analysis was conducted based on data from a semi-standardized survey (n = 395) of people in Austria, who regularly take medicine. The data were analysed according to the structuring content analysis. RESULTS: The extended model shows a new kind of logic. While the steps "fill", "take", "monitor" and "react" are always conducted one after the other, "integrate" and "maintain" form components that are mutually dependent and start after successfully completing the first four steps. "Understand" is a component that influences all steps. The whole process is influenced by personal, socio-economic, disease and medication-related factors, by supportive systems and by the overall health care system. CONCLUSIONS: Based on the present study, the drug self-management process is a complex, multi-layered and iterative one. In the context of counselling, it is important to focus on "understanding" at every step.


Assuntos
Adesão à Medicação/psicologia , Autogestão/psicologia , Áustria , Humanos , Modelos Psicológicos , Pesquisa Qualitativa
7.
Int J Chron Obstruct Pulmon Dis ; 15: 2127-2133, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32982205

RESUMO

Pulmonary rehabilitation (PR) is an important, evidence-based treatment that improves outcomes for people with COPD. Individualized exercise programmes aim to improve exercise capacity; self-management education and psychological support are also provided. Translating increased exercise capacity into sustained behavioural change of increased physical activity is difficult. Other unresolved problems with PR programmes include improving uptake, completion, response and sustaining long-term benefit. We offer a different perspective drawn from clinical experience of PR, quantitative and qualitative studies of singing groups for people with COPD, and stroke rehabilitation research that gives psychological factors a more central role in determining outcomes after PR. We discuss Take Charge; a simple but effective psychological intervention promoting self-management--that could be used as part of a PR programme or in situations where PR was declined or unavailable. This may be particularly relevant now when traditional face-to-face group programmes have been disrupted by COVID-19 precautions.


Assuntos
Controle de Doenças Transmissíveis , Infecções por Coronavirus , Terapia por Exercício , Comportamentos Relacionados com a Saúde , Pandemias , Pneumonia Viral , Doença Pulmonar Obstrutiva Crônica , Pesquisa de Reabilitação , Betacoronavirus , Infecções por Coronavirus/epidemiologia , Infecções por Coronavirus/prevenção & controle , Terapia por Exercício/métodos , Terapia por Exercício/organização & administração , Humanos , Pandemias/prevenção & controle , Pneumonia Viral/epidemiologia , Pneumonia Viral/prevenção & controle , Sistemas de Apoio Psicossocial , Doença Pulmonar Obstrutiva Crônica/psicologia , Doença Pulmonar Obstrutiva Crônica/reabilitação , Projetos de Pesquisa , Autogestão/métodos , Autogestão/psicologia , Resultado do Tratamento
8.
BMJ Open ; 10(9): e040951, 2020 09 09.
Artigo em Inglês | MEDLINE | ID: mdl-32912958

RESUMO

OBJECTIVES: To assess the experience of people with long-term respiratory conditions regarding the impact of measures to reduce risk of COVID-19. DESIGN: Analysis of data (n=9515) from the Asthma UK and British Lung Foundation partnership COVID-19 survey collected online between 1 and 8 April 2020. SETTING: Community. PARTICIPANTS: 9515 people with self-reported long-term respiratory conditions. 81% female, age ranges from ≤17 years to 80 years and above, from all nations of the UK. Long-term respiratory conditions reported included asthma (83%), chronic obstructive pulmonary disease (10%), bronchiectasis (4%), interstitial lung disease (2%) and 'other' (<1%) (eg, lung cancer and pulmonary endometriosis). OUTCOME MEASURES: Study responses related to impacts on key elements of healthcare, as well as practical, psychological and social consequences related to the COVID-19 pandemic and social distancing measures. RESULTS: 45% reported disruptions to care, including cancellations of appointments, investigations, pulmonary rehabilitation, treatment and monitoring. Other practical impacts such as difficulty accessing healthcare services for other issues and getting basic necessities such as food were also common. 36% did not use online prescriptions, and 54% had not accessed online inhaler technique videos. Psychosocial impacts including anxiety, loneliness and concerns about personal health and family were prevalent. 81% reported engaging in physical activity. Among the 11% who were smokers, 48% reported they were planning to quit smoking because of COVID-19. CONCLUSIONS: COVID-19 and related social distancing measures are having profound impacts on people with chronic respiratory conditions. Urgent adaptation and signposting of services is required to mitigate the negative health consequences of the COVID-19 response for this group.


Assuntos
Infecções por Coronavirus , Exercício Físico , Pandemias , Pneumonia Viral , Saúde Pública , Doenças Respiratórias , Autogestão , Isolamento Social/psicologia , Adolescente , Adulto , Idoso de 80 Anos ou mais , Ansiedade/prevenção & controle , Betacoronavirus , Infecções por Coronavirus/fisiopatologia , Infecções por Coronavirus/prevenção & controle , Infecções por Coronavirus/psicologia , Estudos Transversais , Exercício Físico/fisiologia , Exercício Físico/psicologia , Feminino , Necessidades e Demandas de Serviços de Saúde , Humanos , Solidão/psicologia , Masculino , Pandemias/prevenção & controle , Pneumonia Viral/fisiopatologia , Pneumonia Viral/prevenção & controle , Pneumonia Viral/psicologia , Saúde Pública/métodos , Saúde Pública/normas , Doenças Respiratórias/epidemiologia , Doenças Respiratórias/fisiopatologia , Doenças Respiratórias/psicologia , Comportamento de Redução do Risco , Autogestão/métodos , Autogestão/psicologia , Autogestão/tendências , Reino Unido
9.
PLoS One ; 15(8): e0237647, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32804989

RESUMO

INTRODUCTION: Diabetes self-management education is a key aspect in the long-term management of type 2 diabetes. The patient and healthcare professional (HCP) perspective on the use of technology-assisted DSME has yet to be studied. Hence, the objective of this study was to better understand the factors that facilitate or hinder the adoptions of such education by adults with type 2 diabetes and their HCPs. METHODS: We systematically searched five databases (Medline, Embase, CINAHL, Web of Science Core Collection, and PsycINFO) until August 2019. The search included qualitative and mixed-method studies that reported the views of patients and HCPs regarding features, uses, and implementations of technology-assisted DSME. Data were synthesized through an inductive thematic analysis. RESULTS: A total of 13 articles were included, involving 242 patients, ranging from 18 to 81 years and included web-based, mobile application, digital versatile disc (DVD), virtual reality or telehealth interventions. Patients and HCPs had mixed views towards features of the technology-assisted interventions, with patients' personal qualities and HCPs' concerns affecting uses of the interventions. Patients generally preferred technologies that were easy to access, use, and apply and that had reliable information. Patients' ambitions motivated them, and personal attributes such as poor competence with technology, poor literacy, and language barriers acted as barriers. Patients especially liked the peer support that they received but did not like it when there was no regulation of advice on these platforms. HCPs believed that while the interventions were useful to patients, they faced difficulties with integration into their clinical workflows. CONCLUSION: This review explored the features of technology-assisted diabetes self-management education interventions that enhanced positive patient engagements and the negative aspects of both the platforms and the target groups. Technical support and training will be effective in managing these concerns and ensuring meaningful use of these platforms.


Assuntos
Tecnologia Educacional/métodos , Pessoal de Saúde/psicologia , Educação de Pacientes como Assunto/métodos , Autogestão/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Diabetes Mellitus Tipo 2 , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Adulto Jovem
10.
Med Care ; 58 Suppl 2 9S: S88-S93, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32826777

RESUMO

OBJECTIVES: Nonpharmacological options to treat pain are in demand, in part to address the opioid crisis. One such option is acupuncture. Battlefield acupuncture (BFA) is an auricular needling protocol currently used to treat pain in the Veterans Health Administration. We aimed to identify the advantages and disadvantages of BFA from providers' perspectives. METHODS: We rely on an inductive qualitative approach to explore provider perceptions through thematic analysis of semistructured interviews with 43 BFA providers across the nation. RESULTS: We identified the following themes. Disadvantages included: (1) clinical guidelines are insufficient; (2) patients often request multiple BFA visits from providers; (3) BFA can be uncomfortable; (4) BFA may not be an effective treatment option unless it can be provided "on demand"; and (5) BFA can promote euphoria, which can have deleterious consequences for patient self-care. Perceived advantages included: (1) BFA can simultaneously effectively control pain while reducing opioid use; (2) BFA may alleviate the pain that has been unsuccessfully treated by conventional methods; (3) BFA gives providers a treatment option to offer patients with substance use disorder; (4) BFA helps build a trusting patient-provider relationship; (5) BFA can create the opportunity for hope. CONCLUSIONS: Providers perceive BFA to have many benefits, both clinical and relational, including ways in which it may have utility in addressing the current opioid crisis. BFA is easy to deliver and has potential clinical and relational utility. Efforts to better understand effectiveness are warranted.


Assuntos
Acupuntura Auricular/métodos , Atitude do Pessoal de Saúde , Manejo da Dor/métodos , Acupuntura Auricular/efeitos adversos , Analgésicos Opioides/administração & dosagem , Protocolos Clínicos , Euforia/fisiologia , Feminino , Humanos , Masculino , Guias de Prática Clínica como Assunto , Pesquisa Qualitativa , Qualidade de Vida , Autogestão/métodos , Autogestão/psicologia , Transtornos Relacionados ao Uso de Substâncias/prevenção & controle , Fatores de Tempo , Saúde dos Veteranos
11.
BMC Public Health ; 20(1): 1227, 2020 Aug 12.
Artigo em Inglês | MEDLINE | ID: mdl-32787809

RESUMO

BACKGROUND: Patients with coexisting type 2 diabetes and hypertension generally exhibit poor adherence to self-management, which adversely affects their disease control. Therefore, identification of the factors related to patient adherence is warranted. In this study, we aimed to examine (i) the socio-demographic correlates of patient adherence to a set of self-management behaviors relevant to type 2 diabetes and hypertension, namely, medication therapy, diet therapy, exercise, tobacco and alcohol avoidance, stress reduction, and self-monitoring/self-care, and (ii) whether health attitudes and self-efficacy in performing self-management mediated the associations between socio-demographic characteristics and adherence. METHODS: We performed a secondary analysis of data collected in a randomized controlled trial. The sample comprised 148 patients with coexisting type 2 diabetes mellitus and hypertension. Data were collected by a questionnaire and analyzed using logistic regression. RESULTS: Female patients were found to be less likely to exercise regularly (odds ratio [OR] = 0.49, P = 0.03) and more likely to avoid tobacco and alcohol (OR = 9.87, P < 0.001) than male patients. Older patients were found to be more likely to adhere to diet therapy (OR = 2.21, P = 0.01) and self-monitoring/self-care (OR = 2.17, P = 0.02). Patients living with family or others (e.g., caregivers) were found to be more likely to exercise regularly (OR = 3.44, P = 0.02) and less likely to avoid tobacco and alcohol (OR = 0.10, P = 0.04) than those living alone. Patients with better perceived health status were found to be more likely to adhere to medication therapy (OR = 2.02, P = 0.03). Patients with longer diabetes duration (OR = 2.33, P = 0.01) were found to be more likely to adhere to self-monitoring/self-care. Self-efficacy was found to mediate the association between older age and better adherence to diet therapy, while no significant mediating effects were found for health attitudes. CONCLUSIONS: Adherence to self-management was found to be associated with socio-demographic characteristics (sex, age, living status, perceived health status, and diabetes duration). Self-efficacy was an important mediator in some of these associations, suggesting that patient adherence may be improved by increasing patients' self-management efficacy, such as by patient empowerment, collaborative care, or enhanced patient-physician interactions.


Assuntos
Diabetes Mellitus Tipo 2/terapia , Conhecimentos, Atitudes e Prática em Saúde , Hipertensão/terapia , Cooperação do Paciente/estatística & dados numéricos , Autogestão/psicologia , Idoso , Diabetes Mellitus Tipo 2/epidemiologia , Feminino , Humanos , Hipertensão/epidemiologia , Masculino , Pessoa de Meia-Idade , Autoeficácia , Fatores Socioeconômicos , Inquéritos e Questionários
14.
Arch Dis Child ; 105(9): 819-824, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32620567

RESUMO

OBJECTIVE: We aimed to explore the views of Malaysian children with asthma and their parents to enhance understanding of early influences on development of self-management skills. DESIGN: This is a qualitative study conducted among children with asthma and their parents. We used purposive sampling and conducted focus groups and interviews using a semi-structured topic guide in the participants' preferred language. All interviews were audio-recorded, transcribed verbatim, entered into NVivo and analysed using a grounded theory approach. SETTINGS: We identified children aged 7-12 years with parent-reported, physician-diagnosed asthma from seven suburban primary schools in Malaysia. Focus groups and interviews were conducted either at schools or a health centre. RESULTS: Ninety-nine participants (46 caregivers, 53 children) contributed to 24 focus groups and 6 individual interviews. Children mirrored their parents' management of asthma but, in parallel, learnt and gained confidence to independently self-manage asthma from their own experiences and self-experimentation. Increasing independence was more apparent in children aged 10 years and above. Cultural norms and beliefs influenced children's independence to self-manage asthma either directly or indirectly through their social network. External influences, for example, support from school and healthcare, also played a role in the transition. CONCLUSION: Children learnt the skills to self-manage asthma as early as 7 years old with growing independence from the age of 10 years. Healthcare professionals should use child-centred approach and involve schools to facilitate asthma self-management and support a smooth transition to independent self-management. TRIAL REGISTRATION NUMBER: Malaysian National Medical Research Register (NMRR-15-1242-26898).


Assuntos
Asma/terapia , Autogestão/educação , Adulto , Idoso , Asma/psicologia , Criança , Cultura , Feminino , Grupos Focais , Humanos , Entrevistas como Assunto , Malásia , Masculino , Pessoa de Meia-Idade , Pais/educação , Pais/psicologia , Pesquisa Qualitativa , Autogestão/psicologia
15.
J Med Internet Res ; 22(5): e17018, 2020 05 14.
Artigo em Inglês | MEDLINE | ID: mdl-32406858

RESUMO

BACKGROUND: Randomized controlled trials (RCTs) often provide accurate estimates of the internal validity of an intervention but lack information on external validity (generalizability). We conducted an RCT on the effectiveness of a self-management intervention among patients with lymphoma in a population-based setting. OBJECTIVE: The objectives of the current study were to describe the proportion of RCT participants compared to all patients invited to participate, and compare sociodemographic and clinical characteristics of RCT participants with all respondents, all patients invited to participate, and all patients selected from the Netherlands Cancer Registry (NCR) to determine the reach of the intervention. An additional objective was to assess differences on RCT outcome variables between RCT and paper respondents. METHODS: Patients with lymphoma or chronic lymphocytic leukemia ≥18 years old at diagnosis from 13 hospitals in the Netherlands were selected from the population-based NCR, which routinely collects data on sociodemographic and clinical characteristics. Eligible patients were invited to participate in an RCT and complete a questionnaire. Web-based completion determined RCT enrollment, whereas paper respondents were followed observationally. RESULTS: A total of 1193 patients were selected from the NCR, 892 (74.77%) of whom were invited to participate in the trial by their hematologist after verifying eligibility. Among those invited, 25.4% (227/892) completed the web-based questionnaire and were enrolled in the RCT. The RCT participants were younger and there was a higher proportion of men than nonparticipants (P<.001). In addition, 25.7% (229/892) of those invited opted to participate in the paper-based observational follow-up study. Compared with paper respondents, RCT participants were younger (P<.001), with a higher proportion of men (P=.002), and had higher education levels (P=.02). RCT participants more often wanted to receive all available information on their disease (P<.001), whereas paper respondents reported higher levels of emotional distress (P=.009). CONCLUSIONS: From a population-based sample of eligible patients, the participation rate in the RCT was approximately 25%. RCT participants may not be representative of the target population because of different sociodemographic and clinical characteristics. Since RCT participants represent a minority of the target population, RCT results should be interpreted with caution as patients in the RCT may be those least in need of a self-management intervention. TRIAL REGISTRATION: Netherlands Trial Register NTR5953; https://www.trialregister.nl/trial/5790.


Assuntos
Linfoma/terapia , Autogestão/psicologia , Feminino , Humanos , Internet , Masculino , Pessoa de Meia-Idade , Ensaios Clínicos Controlados Aleatórios como Assunto
16.
Neurology ; 94(22): e2384-e2395, 2020 06 02.
Artigo em Inglês | MEDLINE | ID: mdl-32371446

RESUMO

OBJECTIVE: To investigate whether the Revised Self-Monitoring Scale (RSMS), an informant measure of socioemotional sensitivity, is a potential clinical endpoint for treatment trials for patients with behavioral variant frontotemporal dementia (bvFTD). METHODS: We investigated whether RSMS informant ratings reflected disease severity in 475 participants (71 bvFTD mutation+, 154 bvFTD mutation-, 12 behavioral mild cognitive impairment [MCI] mutation+, 98 asymptomatic mutation+, 140 asymptomatic mutation-). In a subset of 62 patients (20 bvFTD mutation+, 35 bvFTD mutation-, 7 MCI mutation+) who had at least 2 time points of T1-weighted images available on the same 3T scanner, we examined longitudinal changes in RSMS score over time and its correspondence to progressive gray matter atrophy. RESULTS: RSMS score showed a similar pattern in mutation carriers and noncarriers, with significant drops at each stage of progression from asymptomatic to very mild, mild, moderate, and severe disease (F 4,48 = 140.10, p < 0.001) and a significant slope of decline over time in patients with bvFTD (p = 0.004, 95% confidence interval [CI] -1.90 to -0.23). More rapid declines on the RSMS corresponded to faster gray matter atrophy predominantly in the salience network (SN), and RSMS score progression best predicted thalamic volume in very mild and mild disease stages of bvFTD. Higher RSMS score predicted more caregiver burden (p < 0.001, 95% CI -0.30 to -0.11). CONCLUSIONS: The RSMS is sensitive to progression of both socioemotional symptoms and SN atrophy in patients with bvFTD and corresponds directly to caregiver burden. The RSMS may be useful in both neurologic practice and clinical trials aiming to treat behavioral symptoms of patients with bvFTD.


Assuntos
Cuidadores/psicologia , Cuidadores/normas , Ensaios Clínicos como Assunto/normas , Demência Frontotemporal/diagnóstico por imagem , Demência Frontotemporal/psicologia , Inquéritos e Questionários/normas , Adulto , Idoso , Ensaios Clínicos como Assunto/métodos , Emoções Manifestas/fisiologia , Expressão Facial , Feminino , Humanos , Estudos Longitudinais , Imagem por Ressonância Magnética/métodos , Imagem por Ressonância Magnética/normas , Masculino , Pessoa de Meia-Idade , Reprodutibilidade dos Testes , Autogestão/métodos , Autogestão/psicologia
17.
Epilepsia ; 61(6): 1129-1141, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32401339

RESUMO

OBJECTIVE: The Program of Active Consumer Engagement in Self-Management in Epilepsy (PACES) is an evidenced-based self-management intervention for adults with epilepsy. Prior randomized controlled trial (RCT) data show that PACES reduces depression and improves self-management, self-efficacy, and quality of life for 6 months postprogram. The objective of this study was to replicate a PACES RCT with key extensions: more diverse patient pool from community-based epilepsy centers; option for telephone-based participation; and longer follow-up (12 months with booster support for intervention group), to examine duration of impact and inform dissemination and implementation. METHODS: Participants were adults with chronic epilepsy (n = 101) without serious mental illness or substantive intellectual impairment, recruited from three epilepsy centers. Participants were randomly assigned to intervention or waitlist control groups. Outcomes included the Epilepsy Self-Management Scale (ESMS), Epilepsy Self-Efficacy Scale (ESES), Quality of Life in Epilepsy-31, Patient Health Questionnaire-9, and Generalized Anxiety Disorder-7, administered at baseline, postintervention (8 weeks), and 6 and 12 months postintervention. Intervention was an 8-week group of five to eight adults co-led by a psychologist and trained peer with epilepsy that met once per week by teleconference or in person at a hospital for 60-75 minutes. Topics included medical, psychosocial, cognitive, and self-management aspects of epilepsy, as well as community integration and epilepsy-related communication. Treatment group provided program evaluation. RESULTS: PACES participants (n = 49) improved relative to controls (n = 52) on the ESES (P < .022) and overall distress composite (P = .008). At 6 months, PACES participants remained improved on the ESES (P = .008) and composite (P = .001), and were improved on the ESMS (P = .005). At 12 months, PACES participants remained improved on the ESMS (P = .006) and were improved on an overall distress composite of combined measures (P = .018). Attrition was low (<6% in each group), and all program satisfaction ratings exceeded 4.0/5.0. SIGNIFICANCE: A consumer-generated epilepsy self-management program with broad psychosocial and medical emphasis can be effectively delivered by telephone or in person and facilitates long-term epilepsy self-management, adjustment, and coping up to 1 year after treatment.


Assuntos
Participação da Comunidade/métodos , Participação da Comunidade/psicologia , Epilepsia/psicologia , Epilepsia/terapia , Autogestão/métodos , Autogestão/psicologia , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Participação do Paciente/métodos , Participação do Paciente/psicologia
18.
J Med Internet Res ; 22(5): e13294, 2020 05 26.
Artigo em Inglês | MEDLINE | ID: mdl-32348253

RESUMO

BACKGROUND: For the last decade, doctor-patient contradiction in China has remained prominent, and workplace violence toward medical staff still occurs frequently. However, little is known about the types and laws of propagation of violence against medical staff online. OBJECTIVE: By using a self-organizing map (SOM), we aimed to explore the microblog propagation law for violent incidents in China that involve medical staff, to classify the types of incidents and provide a basis for rapidly and accurately predicting trends in public opinion and developing corresponding measures to improve the relationship between doctors and patients. METHODS: For this study, we selected 60 cases of violent incidents in China involving medical staff that led to heated discussions on the Sina microblog from 2011 to 2018, searched the web data of the microblog using crawler software, recorded the amount of new tweets every 2 hours, and used the SOM neural network to cluster the number of tweets. Polynomial and exponential functions in MATLAB software were applied to predict and analyze the data. RESULTS: Trends in the propagation of online public opinion regarding the violent incidents were categorized into 8 types: bluff, waterfall, zigzag, steep, abrupt, wave, steep slope, and long slope. The communications exhibited different characteristics. The prediction effect of 4 types of incidents (ie, bluff, waterfall, zigzag, and steep slope) was good and accorded with actual spreading trends. CONCLUSIONS: Our study found that the more serious the consequences of a violent incident, such as a serious injury or death, the more attention it drew on the microblog, the faster was its propagation speed, and the longer was its duration. In these cases, the propagation types were mostly steep slope, long slope, and zigzag. In addition, the more serious the consequences of a violent incident, the higher popularity it exhibited on the microblog. The popularity within a week was significantly higher for acts resulting from patients' dissatisfaction with treatments than for acts resulting from nontherapeutic incidents.


Assuntos
Blogging/normas , Estudos de Avaliação como Assunto , Corpo Clínico/psicologia , Autogestão/psicologia , Violência/classificação , China , Comunicação , Feminino , Humanos , Masculino , Opinião Pública , Violência/psicologia
19.
Drugs Aging ; 37(7): 483-501, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-32342431

RESUMO

BACKGROUND: Managing a medication regimen is a complex self-care activity that requires a high level of integration and coordination between cognitive and physical skills. This scoping review aims to identify available instruments designed to assess an adult individual's ability to manage a medication regimen independently and to identify reliable and valid tools to be used in clinical practice and research. METHODS: Five databases (PubMed/MEDLINE, CINAHL Complete, PsycINFO, Embase, and International Pharmaceutical Abstracts) were searched to identify articles reporting the development of an instrument to assess medication self-management capacity in adults. The process included a broad initial search of the databases, followed by screening of titles and abstracts, and full review of relevant articles. For each instrument identified, characteristics, including validity and reliability assessments, were summarized. RESULTS: Sixteen papers were identified that reviewed or described the development and/or validation of 26 instruments designed to assess medication self-management capacity. Most instruments were designed to identify cognitive and physical barriers to successful medication management, but there was inconsistency across instruments in the specific skills assessed and the assessment method used. Most instruments were validated by testing at least one related construct, such as cognitive function, activities of daily living or instrumental activities of daily living performance, or medication adherence. CONCLUSION: Development of standardized instruments to quantify medication self-management capacity is still growing. The choice of instrument for use in a specific clinical or research setting will depend on the purpose for making the assessment and the population that it will be applied to. Results of this review can assist in selecting an appropriate instrument or guiding the development of new instruments for assessment of medication self-management capacity for specific clinical or research purposes.


Assuntos
Cognição , Adesão à Medicação/psicologia , Autocuidado , Autogestão/psicologia , Atividades Cotidianas , Humanos , Autocuidado/psicologia , Autocuidado/normas
20.
Curr Diab Rep ; 20(6): 21, 2020 04 23.
Artigo em Inglês | MEDLINE | ID: mdl-32323022

RESUMO

PURPOSE OF REVIEW: Emerging adulthood (ages 18-29) presents many emotional, social, and developmental challenges that can contribute to an increased sense of burden when managing type 1 diabetes (T1D). Diabetes distress (DD) is the concept that captures the emotional burden, frustrations, and worries resulting from living with T1D. This integrative review sets out to examine the impact of developmental context by answering this question: How do the challenges of emerging adulthood inform our understanding of DD? RECENT FINDINGS: DD is highly prevalent in emerging adults and occurs at higher rates than in other age groups. Qualitative studies reveal that DD is embedded within the developmental challenges specific to living with T1D during this stage. Quantitative studies reveal the prevalence and correlates of DD in this age group, and qualitative studies augment these findings by capturing the scope and complexity of the emotional burden of living with T1D as an emerging adult.


Assuntos
Diabetes Mellitus Tipo 1/psicologia , Autogestão/psicologia , Transição para Assistência do Adulto , Adaptação Psicológica , Adolescente , Adulto , Glicemia/análise , Automonitorização da Glicemia/psicologia , Estudos de Coortes , Estudos Transversais , Diabetes Mellitus Tipo 1/sangue , Diabetes Mellitus Tipo 1/terapia , Feminino , Humanos , Masculino , Autonomia Pessoal , Projetos Piloto , Qualidade de Vida , Estresse Psicológico , Adulto Jovem
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