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1.
Appl Clin Inform ; 14(1): 37-44, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36351548

RESUMO

BACKGROUND: Hypoglycemia (HG) causes symptoms that can be fatal, and confers risk of dementia. Wearable devices can improve measurement and feedback to patients and clinicians about HG events and risk. OBJECTIVES: The aim of the study is to determine whether vulnerable older adults could use wearables, and explore HG frequency over 2 weeks. METHODS: First, 10 participants with diabetes mellitus piloted a continuous glucometer, physical activity monitor, electronic medication bottles, and smartphones facilitating prompts about medications, behaviors, and symptoms. They reviewed graphs of glucose values, and were asked about the monitoring experience. Next, a larger sample (N = 70) wore glucometers and activity monitors, and used the smartphone and bottles, for 2 weeks. Participants provided feedback about the devices. Descriptive statistics summarized demographics, baseline experiences, behaviors, and HG. RESULTS: In the initial pilot, 10 patients aged 50 to 85 participated. Problems addressed included failure of the glucometer adhesive. Patients sought understanding of graphs, often requiring some assistance with interpretation. Among 70 patients in subsequent testing, 67% were African-American, 59% were women. Nearly one-fourth (23%) indicated that they never check their blood sugars. Previous HG was reported by 67%. In 2 weeks of monitoring, 73% had HG (glucose ≤70 mg/dL), and 42% had serious, clinically significant HG (glucose under 54 mg/dL). Eight patients with HG also had HG by home-based blood glucometry. Nearly a third of daytime prompts were unanswered. In 24% of participants, continuous glucometers became detached. CONCLUSION: Continuous glucometry occurred for 2 weeks in an older vulnerable population, but devices posed wearability challenges. Most patients experienced HG, often serious in magnitude. This suggests important opportunities to improve wearability and decrease HG frequency among this population.


Assuntos
Diabetes Mellitus , Hipoglicemia , Dispositivos Eletrônicos Vestíveis , Humanos , Feminino , Idoso , Masculino , Glicemia , Automonitorização da Glicemia , Pacientes Ambulatoriais , Hipoglicemia/diagnóstico , Hipoglicemia/epidemiologia , Glucose
2.
J Am Geriatr Soc ; 68 Suppl 2: S21-S27, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-32589278

RESUMO

The National Institute on Aging IMbedded Pragmatic Alzheimer's Disease and Alzheimer's Disease-Related Dementias Clinical Trials (IMPACT) Collaboratory serves as a national resource for the conduct of embedded pragmatic clinical trials to improve the care of people living with dementia (PLWD) in partnership with the healthcare systems that serve them. Inherent in this objective is the need to train and support a cadre of investigators prepared to conduct this work now and in the future. The Training Core of the IMPACT Collaboratory supports the training of investigators to become experts in this field through three objectives: (1) curricula development and dissemination; (2) network generation and navigation; and (3) a career development award program. The innovative approach of the Training Core will require developing content and providing training experiences that recognize the unique challenges of research at the intersection of health systems, pragmatic trials, and PLWD and their caregivers. Ultimately, we seek to build the nation's capacity to conduct research that bridges the gaps between efficacy studies to effectiveness research to implementation science. Although foundational resources in the methods of each of these areas are already available, few actually focus on pragmatic trials embedded within healthcare systems that focus on PLWD. To bring new interventions for PLWD from efficacy to widespread implementation, researchers must build diffusability, adaptability, heterogeneity, and scalability into the design of the intervention. In achieving these objectives, the Training Core will utilize the network of investigators, institutions, and stakeholders represented in the IMPACT Collaboratory. J Am Geriatr Soc 68:S21-S27, 2020.


Assuntos
Fortalecimento Institucional , Cuidadores , Demência/enfermagem , Mão de Obra em Saúde , Ensaios Clínicos Pragmáticos como Assunto , Pesquisadores/educação , Atenção à Saúde , Humanos , National Institute on Aging (U.S.) , Estados Unidos
3.
BMC Health Serv Res ; 17(1): 384, 2017 06 02.
Artigo em Inglês | MEDLINE | ID: mdl-28576141

RESUMO

BACKGROUND: Few studies have explored patients' experiences of treatment for CFS/ME. This study aims to fill this gap by capturing the perspective of patients who have been treated by NHS specialist CFS/ME services in England. METHODS: Semi-structured interviews were conducted during the period June-September 2014 with 16 adults who were completing treatment at one of three outpatient NHS specialist CFS/ME services. Interviews were analysed thematically using constant comparison techniques, with particular attention paid to contrasting views. RESULTS: Three themes were identified: 'Journey to specialist services'; 'Things that help or hinder treatment'; and 'Support systems'. Within these themes nine sub-themes were identified. A wide range of factors was evident in forming participants' experiences, including personal characteristics such as perseverance and optimism, and service factors such as flexibility and positive, supportive relationships with clinicians. Participants described how specialist services played a unique role, which was related to the contested nature of the condition. Many participants had experienced a lack of validation and medical and social support before attending a specialist service. Patients' experiences of life before referral, and the concerns that they expressed about being discharged, highlighted the hardship and obstacles which people living with CFS/ME continue to experience in our society. CONCLUSIONS: The experiences of CFS/ME patients in our study showed that NHS specialist CFS/ME services played a vital role in patients' journeys towards an improved quality of life. This improvement came about through a process which included validation of patients' experiences, acceptance of change, practical advice and support, and therapeutic outcomes.


Assuntos
Síndrome de Fadiga Crônica/terapia , Satisfação do Paciente , Qualidade de Vida , Especialização , Adulto , Inglaterra , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Encaminhamento e Consulta , Medicina Estatal , Adulto Jovem
4.
BMJ Open ; 7(1): e012633, 2017 01 13.
Artigo em Inglês | MEDLINE | ID: mdl-28087544

RESUMO

OBJECTIVE: To synthesis the qualitative studies of children's experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). DESIGN: Systematic review and meta-ethnography. BACKGROUND: CFS/ME is an important disabling illness, with uncertain cause and prognosis. As a result, children with CFS/ME can find themselves living with greater uncertainty and stigma, exacerbating the impact of the condition. There is a growing body of qualitative research in CFS/ME, yet there has been no attempt to systematically synthesis the studies involving children. METHODS: Studies exploring the experiences of children diagnosed with CFS/ME, published or unpublished, using qualitative methods were eligible. MEDLINE, EMBASE, PsycINFO and CINAHL databases were searched as well as grey literature, reference lists and contacting authors. Quality assessment was done independently using the Critical Appraisal Skills Programme (CASP) checklist. Studies were synthesised using techniques of meta-ethnography. RESULTS: Ten studies involving 82 children with CFS/ME aged 8-18 were included. Our synthesis describes four third-order constructs within children's experiences: (1) disruption and loss: physical, social and the self; (2) barriers to coping: suspension in uncertainty, problems with diagnosis and disbelief; (3) facilitators to coping: reducing uncertainty, credible illness narratives, diagnosis and supportive relationships and (4) hope, personal growth and recovery. CFS/ME introduces profound biographical disruption through its effects on children's ability to socialise, perform school and therefore how they see their future. Unfamiliarity of the condition, problems with diagnosis and felt stigma prevent children from forming a new illness identity. Children adopt coping strategies such as building credible explanations for their illness. CONCLUSIONS: Physical, social, emotional and self-dimensions of life should be included when treating and measuring outcomes from healthcare in paediatric CFS/ME. There is a need for greater recognition and diagnosis of childhood CFS/ME, specialist advice on activity management and improved communication between health and education providers to help children cope with their condition.


Assuntos
Síndrome de Fadiga Crônica/psicologia , Qualidade de Vida/psicologia , Adaptação Psicológica , Adolescente , Criança , Fadiga/etiologia , Síndrome de Fadiga Crônica/diagnóstico , Feminino , Humanos , Masculino , Pesquisa Qualitativa , Estigma Social
5.
Clin Child Psychol Psychiatry ; 22(1): 128-139, 2017 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-27215228

RESUMO

BACKGROUND: An estimated 10% of children and adolescents with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) experience eating difficulties; however, little is known about why these difficulties develop, what the impact is or how to manage them. METHODS: Semi-structured interviews were conducted with adolescents (aged 12-17 years) attending a specialist service who have a primary diagnosis of CFS/ME and experience nausea, abdominal pain and/or eating difficulties. A total of 11 adolescents were interviewed (eight female, mean age: 15 years). Transcripts were analysed thematically using techniques of constant comparison which commenced soon after data collection and informed further interview protocols. RESULTS: Adolescents perceived their eating difficulties were caused by abdominal symptoms, being too fatigued to eat and changes to their senses of taste and smell. Some of the adolescents recognised how their eating difficulties were exacerbated and maintained by psychological factors of low mood and anxiety. The adolescents eating difficulties had a negative impact on their weight, fatigue, socialising and family life. They perceived helpful interventions to include modifying their diets, families adjusting and also medical interventions (e.g. medication). Adolescents identified that early education and support about diet and eating habits would have been helpful. CONCLUSIONS: If adolescents diagnosed with CFS/ME develop eating difficulties, this has a significant impact on their quality of life, illness and on their families. Not eating increases fatigue, low mood and anxiety which further exacerbates the eating difficulties. Clinicians should screen for eating difficulties in those with symptoms of nausea and abdominal pain, warn adolescents and their families of the risk of developing eating difficulties and provide interventions and support as early as possible.


Assuntos
Dor Abdominal/complicações , Afeto/fisiologia , Síndrome de Fadiga Crônica/complicações , Comportamento Alimentar/psicologia , Náusea/complicações , Dor Abdominal/fisiopatologia , Dor Abdominal/psicologia , Adolescente , Ansiedade/complicações , Ansiedade/fisiopatologia , Ansiedade/psicologia , Criança , Dieta , Síndrome de Fadiga Crônica/fisiopatologia , Síndrome de Fadiga Crônica/psicologia , Comportamento Alimentar/fisiologia , Feminino , Humanos , Masculino , Náusea/fisiopatologia , Náusea/psicologia , Qualidade de Vida/psicologia
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