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1.
Diabetologia ; 2024 Jul 30.
Artigo em Inglês | MEDLINE | ID: mdl-39080044

RESUMO

AIMS/HYPOTHESIS: The aim of this work was to examine the impact of hypoglycaemia on daily functioning among adults with type 1 diabetes or insulin-treated type 2 diabetes, using the novel Hypo-METRICS app. METHODS: For 70 consecutive days, 594 adults (type 1 diabetes, n=274; type 2 diabetes, n=320) completed brief morning and evening Hypo-METRICS 'check-ins' about their experienced hypoglycaemia and daily functioning. Participants wore a blinded glucose sensor (i.e. data unavailable to the participants) for the study duration. Days and nights with or without person-reported hypoglycaemia (PRH) and/or sensor-detected hypoglycaemia (SDH) were compared using multilevel regression models. RESULTS: Participants submitted a mean ± SD of 86.3±12.5% morning and 90.8±10.7% evening check-ins. For both types of diabetes, SDH alone had no significant associations with the changes in daily functioning scores. However, daytime and night-time PRH (with or without SDH) were significantly associated with worsening of energy levels, mood, cognitive functioning, negative affect and fear of hypoglycaemia later that day or while asleep. In addition, night-time PRH (with or without SDH) was significantly associated with worsening of sleep quality (type 1 and type 2 diabetes) and memory (type 2 diabetes). Further, daytime PRH (with or without SDH), was associated with worsening of fear of hyperglycaemia while asleep (type 1 diabetes), memory (type 1 and type 2 diabetes) and social functioning (type 2 diabetes). CONCLUSIONS/INTERPRETATION: This prospective, real-world study reveals impact on several domains of daily functioning following PRH but not following SDH alone. These data suggest that the observed negative impact is mainly driven by subjective awareness of hypoglycaemia (i.e. PRH), through either symptoms or sensor alerts/readings and/or the need to take action to prevent or treat episodes.

2.
Diabetologia ; 67(9): 1731-1759, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-38910151

RESUMO

Given the proven benefits of screening to reduce diabetic ketoacidosis (DKA) likelihood at the time of stage 3 type 1 diabetes diagnosis, and emerging availability of therapy to delay disease progression, type 1 diabetes screening programmes are being increasingly emphasised. Once broadly implemented, screening initiatives will identify significant numbers of islet autoantibody-positive (IAb+) children and adults who are at risk of (confirmed single IAb+) or living with (multiple IAb+) early-stage (stage 1 and stage 2) type 1 diabetes. These individuals will need monitoring for disease progression; much of this care will happen in non-specialised settings. To inform this monitoring, JDRF in conjunction with international experts and societies developed consensus guidance. Broad advice from this guidance includes the following: (1) partnerships should be fostered between endocrinologists and primary-care providers to care for people who are IAb+; (2) when people who are IAb+ are initially identified there is a need for confirmation using a second sample; (3) single IAb+ individuals are at lower risk of progression than multiple IAb+ individuals; (4) individuals with early-stage type 1 diabetes should have periodic medical monitoring, including regular assessments of glucose levels, regular education about symptoms of diabetes and DKA, and psychosocial support; (5) interested people with stage 2 type 1 diabetes should be offered trial participation or approved therapies; and (6) all health professionals involved in monitoring and care of individuals with type 1 diabetes have a responsibility to provide education. The guidance also emphasises significant unmet needs for further research on early-stage type 1 diabetes to increase the rigour of future recommendations and inform clinical care.


Assuntos
Autoanticorpos , Diabetes Mellitus Tipo 1 , Humanos , Diabetes Mellitus Tipo 1/imunologia , Diabetes Mellitus Tipo 1/diagnóstico , Autoanticorpos/imunologia , Autoanticorpos/sangue , Consenso , Ilhotas Pancreáticas/imunologia , Progressão da Doença , Cetoacidose Diabética/diagnóstico , Cetoacidose Diabética/imunologia
3.
Diabet Med ; 41(1): e15231, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37746767

RESUMO

AIMS: To determine the frequency, severity, burden, and utility of hypoglycaemia symptoms among adults with type 1 diabetes (T1D) and impaired awareness of hypoglycaemia (IAH) at baseline and week 24 following the HypoCOMPaSS awareness restoration intervention. METHODS: Adults (N = 96) with T1D (duration: 29 ± 12 years; 64% women) and IAH completed the Hypoglycaemia Burden Questionnaire (HypoB-Q), assessing experience of 20 pre-specified hypoglycaemia symptoms, at baseline and week 24. RESULTS: At baseline, 93 (97%) participants experienced at least one symptom (mean ± SD 10.6 ± 4.6 symptoms). The proportion recognising each specific symptom ranged from 15% to 83%. At 24 weeks, symptom severity and burden appear reduced, and utility increased. CONCLUSIONS: Adults with T1D and IAH experience a range of hypoglycaemia symptoms. Perceptions of symptom burden or utility are malleable. Although larger scale studies are needed to confirm, these findings suggest that changing the salience of the symptomatic response may be more important in recovering protection from hypoglycaemia through regained awareness than intensifying symptom frequency or severity.


Assuntos
Diabetes Mellitus Tipo 1 , Hipoglicemia , Adulto , Humanos , Feminino , Masculino , Diabetes Mellitus Tipo 1/complicações , Conscientização , Hipoglicemia/epidemiologia , Hipoglicemia/prevenção & controle , Hipoglicemia/diagnóstico , Inquéritos e Questionários
4.
Diabet Med ; 41(5): e15312, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38385984

RESUMO

AIMS: Psychological care is recognised as an integral part of quality diabetes care. We set out to describe the roles and competencies of the clinical psychologist as a member of the multidisciplinary adult diabetes care team, focused on secondary care. METHODS: The authors are clinically experienced psychologists involved in adult diabetes care, from Australia, Europe and North America, and active members of the international psychosocial aspects of diabetes study group. Consensus was reached as a group on the roles and competencies of the clinical psychologist working in adult diabetes secondary care, building both on expert opinion and a selective review and discussion of the literature on psychological care in diabetes, clinical guidelines and competency frameworks. RESULTS: The clinical psychologist fulfils multiple roles: (1) as a clinician (psychological assessment and therapy), (2) as advisor to the healthcare team (training, consulting), (3) as a communicator and promotor of person-centred care initiatives and (4) as a researcher. Four competencies that are key to successfully fulfilling the above-mentioned roles in a diabetes setting are as follows: (a) specialised knowledge, (b) teamwork and advice, (c) assessment, (d) psychotherapy (referred to as STAP framework). CONCLUSIONS: The roles and competencies of clinical psychologists working in diabetes extend beyond the requirements of most university and post-graduate curricula. There is a need for a comprehensive, accredited specialist post-graduate training for clinical psychologists working in diabetes care, building on the proposed STAP framework. This calls for a collaborative effort involving diabetes organisations, clinical psychology societies and diabetes psychology interest groups.


Assuntos
Competência Clínica , Diabetes Mellitus , Adulto , Humanos , Consenso , Diabetes Mellitus/terapia , Currículo , Europa (Continente)
5.
Diabet Med ; : e15419, 2024 Aug 11.
Artigo em Inglês | MEDLINE | ID: mdl-39129150

RESUMO

AIM: One third of Australian children diagnosed with type 1 diabetes present with life-threatening diabetic ketoacidosis (DKA) at diagnosis. Screening for early-stage, presymptomatic type 1 diabetes, with ongoing follow-up, can substantially reduce this risk (<5% risk). Several screening models are being trialled internationally, without consensus on the optimal approach. This pilot study aims to assess three models for a routine, population-wide screening programme in Australia. METHODS: An implementation science-guided pilot study to evaluate the feasibility, acceptability and costs of three screening models in children will be conducted between July 2022 and June 2024. These models are as follows: (1) Genetic risk-stratified screening using newborn heel prick dried bloodspots, followed by autoantibody testing from 11 months of age; (2) genetic risk-stratified screening of infant (6-12 months) saliva followed by autoantibody testing from 10 months of age; and (3) autoantibody screening using capillary dried bloodspots collected from children aged 2, 6 or 10 years. Cohorts for each model will be recruited from targeted geographic areas across Australia involving ≥2 states per cohort, with a recruitment target of up to 3000 children per cohort (total up to 9000 children). The primary outcome is screening uptake for each cohort. Secondary outcomes include programme feasibility, costs, parental anxiety, risk perception, satisfaction, well-being and quality of life, and health professional attitudes and satisfaction. CONCLUSIONS: This pilot is the first direct comparison of three screening implementation models for general population screening. Findings will provide evidence to inform a potential national screening programme for Australian children. TRIAL REGISTRATION: ACTRN12622000381785.

6.
Diabet Med ; 41(3): e15195, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37562414

RESUMO

AIMS: To examine the psychometric properties of the Diabetes Management Experiences Questionnaire (DME-Q). Adapted from the validated Glucose Monitoring Experiences Questionnaire, the DME-Q captures satisfaction with diabetes management irrespective of treatment modalities. METHODS: The DME-Q was completed by adults with type 1 diabetes as part of a randomized controlled trial comparing hybrid closed loop (HCL) to standard therapy. Most psychometric properties were examined with pre-randomization data (n = 149); responsiveness was examined using baseline and 26-week follow-up data (n = 120). RESULTS: Pre-randomization, participants' mean age was 44 ± 12 years, 52% were women. HbA1c was 61 ± 11 mmol/mol (7.8 ± 1.0%), diabetes duration was 24 ± 12 years and 47% used an insulin pump prior to the trial. A forced three-factor analysis revealed three expected domains, that is, 'Convenience', 'Effectiveness' and 'Intrusiveness', and a forced one-factor solution was also satisfactory. Internal consistency reliability was strong for the three subscales ( α range = 0.74-0.84) and 'Total satisfaction' ( α = 0.85). Convergent validity was demonstrated with moderate correlations between DME-Q 'Total satisfaction' and diabetes distress (PAID: rs = -0.57) and treatment satisfaction (DTSQ; rs = 0.58). Divergent validity was demonstrated with a weak correlation with prospective/retrospective memory (PRMQ: rs = -0.16 and - 0.13 respectively). Responsiveness was demonstrated, as participants randomized to HCL had higher 'Effectiveness' and 'Total satisfaction' scores than those randomized to standard therapy. CONCLUSIONS: The 22-item DME-Q is a brief, acceptable, reliable measure with satisfactory structural and construct validity, which is responsive to intervention. The DME-Q is likely to be useful for evaluation of new pharmaceutical agents and technologies in research and clinical settings.


Assuntos
Diabetes Mellitus Tipo 1 , Adulto , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Diabetes Mellitus Tipo 1/tratamento farmacológico , Automonitorização da Glicemia , Satisfação do Paciente , Psicometria , Reprodutibilidade dos Testes , Estudos Retrospectivos , Estudos Prospectivos , Glicemia , Inquéritos e Questionários
7.
Health Qual Life Outcomes ; 22(1): 70, 2024 Sep 02.
Artigo em Inglês | MEDLINE | ID: mdl-39218951

RESUMO

BACKGROUND: Diabetes-specific quality of life (QoL) questionnaires are commonly used to assess the impact of diabetes and its management on an individual's quality of life. While several valid and reliable measures of diabetes-specific QoL exist, there is no consensus on which to use and in what setting. Furthermore, there is limited evidence of their acceptability to people with diabetes. Our aim was to explore perceptions of adults with type 1 diabetes (T1D) toward five diabetes-specific QoL measures. METHODS: Adults (aged 18 + years) with T1D living in Australia or the United Kingdom (UK) were eligible to take part in 'YourSAY: QoL', an online cross-sectional survey. Recruitment involved study promotion on diabetes-related websites and social media, as well as direct invitation of people with T1D via a hospital client list (UK only). In random order, participants completed five diabetes-specific QoL measures: Audit of Diabetes-Dependent Quality of Life (ADDQoL-19); Diabetes Care Profile: Social and Personal Factors subscale (DCP); DAWN Impact of Diabetes Profile (DIDP); Diabetes-Specific Quality of Life Scale: Burden Subscale (DSQoLS); Diabetes Quality of Life Questionnaire (Diabetes QOL-Q). They were invited to provide feedback on each questionnaire in the form of a brief free-text response. Responses were analysed using inductive, thematic template analysis. RESULTS: Of the N = 1,946 adults with T1D who completed the survey, 20% (UK: n = 216, Australia: n = 168) provided qualitative responses about ≥ 1 measure. All measures received both positive and negative feedback, across four themes: (1) clarity and ease of completion, e.g., difficulty isolating impact of diabetes, dislike of hypothetical questions, and preference for 'not applicable' response options; (2) relevance and comprehensiveness, e.g., inclusion of a wide range of aspects of life to improve personal relevance; (3) length and repetition, e.g., length to be balanced against respondent burden; (4) framing and tone, e.g., preference for respectful language and avoidance of extremes. CONCLUSIONS: These findings suggest opportunities to improve the relevance and acceptability of existing diabetes-specific QoL measures, and offer considerations for developing new measures, which need to be better informed by the preferences of people living with diabetes.


Assuntos
Diabetes Mellitus Tipo 1 , Pesquisa Qualitativa , Qualidade de Vida , Humanos , Diabetes Mellitus Tipo 1/psicologia , Diabetes Mellitus Tipo 1/terapia , Qualidade de Vida/psicologia , Masculino , Feminino , Adulto , Estudos Transversais , Inquéritos e Questionários , Pessoa de Meia-Idade , Austrália , Reino Unido , Adulto Jovem , Adolescente , Idoso , Percepção , Psicometria
8.
J Pediatr Psychol ; 49(1): 45-55, 2024 Jan 19.
Artigo em Inglês | MEDLINE | ID: mdl-37840456

RESUMO

OBJECTIVE: To assess parent psychological distress in families of children with common chronic health conditions (CHC) and to explore relationships between parent psychological distress, unmet supportive care needs and children's quality of life (QoL). METHOD: Cross-sectional study involving parents of children diagnosed with a common CHC between 0 and 12 years of age and who had received treatment within the last 5 years. Eligible parents completed an online survey, that included the Depression Anxiety Stress Scale (DASS-21) assessing distress in parents and a 34-item assessment of unmet supportive care needs across 6 domains. Parents completed ratings of their child's current functioning (QoL) using the 23-item PedsQL. Multivariable regression models examined the relative association between unmet needs, children's QoL and parents' depression, anxiety, and stress. RESULTS: The sample consisted of 194 parents of children with congenital heart disease (n=97; 50%), diabetes (n=50; 26%), cancer (n=39; 20%), and asthma (n=8; 4%). A significant proportion of parents had moderate-severe symptoms of depression (26%), anxiety (38%), and stress (40%). Of the PedsQL scales, the poorest outcomes were found for emotional and school functioning. Multivariable analyses showed that both higher unmet needs and poorer child emotional functioning were associated with parent depression, anxiety, and stress symptoms. CONCLUSION: Evidence linking parent distress symptoms to higher unmet needs and poorer child emotional functioning suggests these factors may be targets for interventions to alleviate parent distress. Longitudinal research using larger samples is required to replicate findings, and clarify the magnitude and direction of associations.


Assuntos
Angústia Psicológica , Qualidade de Vida , Criança , Humanos , Estudos Transversais , Pais/psicologia , Ansiedade/psicologia , Estresse Psicológico
9.
Diabet Med ; 40(1): e14953, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36084309

RESUMO

AIMS: To examine the prevalence and health risks of binge eating in people with diabetes. METHODS: Self-report data were analysed from a subsample (n = 582 type 1 diabetes/735 type 2 diabetes) of Diabetes MILES - the Netherlands, an online survey. Prevalence of binge eating was compared across diabetes type and treatment and between participants with and without binges for eating styles, diabetes treatment and outcomes, weight, BMI and psychological comorbidity. Associations between binge eating, HbA1c , BMI, diabetes distress were assessed using hierarchical linear regression analyses. RESULTS: 23% (n = 308) of participants reported eating binges, with 16% at least monthly, and 6% at least weekly. Prevalence and frequency of binges did not differ across diabetes type or treatment. People reporting binges scored higher on dietary restraint, emotional and external eating and reported higher weight and BMI than those without binges. Only people with type 1 diabetes and eating binges had a higher HbA1c . Hierarchical regression analyses demonstrated that binge eating was independently associated with higher HbA1c (ß = 0.12, p=0.001), BMI (ß = 0.13, p < 0.001) but not with diabetes distress. CONCLUSIONS: This study found binge eating to be associated with eating styles, BMI and HbA1c . However, our cross-sectional data do not allow for conclusions on causality. Future studies could further examine the directions of these associations and their clinical implications.


Assuntos
Transtorno da Compulsão Alimentar , Diabetes Mellitus Tipo 1 , Diabetes Mellitus Tipo 2 , Adulto , Humanos , Transtorno da Compulsão Alimentar/epidemiologia , Transtorno da Compulsão Alimentar/psicologia , Diabetes Mellitus Tipo 2/epidemiologia , Diabetes Mellitus Tipo 2/psicologia , Prevalência , Diabetes Mellitus Tipo 1/complicações , Diabetes Mellitus Tipo 1/epidemiologia , Estudos Transversais , Países Baixos/epidemiologia , Avaliação de Resultados em Cuidados de Saúde
10.
Diabet Med ; 40(1): e14944, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36004676

RESUMO

AIMS: To explore the association between the use of glycaemic technologies and person-reported outcomes (PROs) in adults with type 1 diabetes (T1D). METHODS: We included T1D and technology publications reporting on PROs since 2014. Only randomised controlled trials and cohort studies that used validated PRO measures (PROMs) were considered. RESULTS: T1D studies reported on a broad range of validated PROMs, mainly as secondary outcome measures. Most studies examined continuous glucose monitoring (CGM), intermittently scanned CGM (isCGM), and the role of continuous subcutaneous insulin infusion (CSII), including sensor-augmented CSII and closed loop systems. Generally, studies demonstrated a positive impact of technology on hypoglycaemia-specific and diabetes-specific PROs, including reduced fear of hypoglycaemia and diabetes distress, and greater satisfaction with diabetes treatment. In contrast, generic PROMs (including measures of health/functional status, emotional well-being, depressive symptoms, and sleep quality) were less likely to demonstrate improvements associated with the use of glycaemic technologies. Several studies showed contradictory findings, which may relate to study design, population and length of follow-up. Differences in PRO findings were apparent between randomised controlled trials and cohort studies, which may be due to different populations studied and/or disparity between trial and real-world conditions. CONCLUSIONS: PROs are usually assessed as secondary outcomes in glycaemic technology studies. Hypoglycaemia-specific and diabetes-specific, but not generic, PROs show the benefits of glycaemic technologies, and deserve a more central role in future studies as well as routine clinical care.


Assuntos
Diabetes Mellitus Tipo 1 , Hipoglicemia , Adulto , Humanos , Glicemia , Automonitorização da Glicemia , Diabetes Mellitus Tipo 1/tratamento farmacológico , Hipoglicemia/induzido quimicamente , Hipoglicemia/prevenção & controle , Hipoglicemia/tratamento farmacológico , Hipoglicemiantes/uso terapêutico , Insulina/uso terapêutico , Sistemas de Infusão de Insulina , Qualidade de Vida , Tecnologia , Ensaios Clínicos Controlados Aleatórios como Assunto
11.
Intern Med J ; 53(8): 1347-1355, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-36008367

RESUMO

BACKGROUND: The Diabetes Psychosocial Assessment Tool (DPAT) was developed to assess the psychosocial well-being of young adults with type 1 diabetes in clinical practice. The DPAT includes three validated questionnaires (assessing diabetes distress, anxiety/depressive symptoms and emotional well-being) and an agenda-setting tool. It is currently used by the Queensland Statewide Diabetes Clinical Network (available at Clinical Excellence Queensland). AIMS: To describe agenda items set by young adults with type 1 diabetes and investigate their association with emotional well-being/social support. METHODS: The DPAT was completed by young adults attending routine diabetes outpatient appointments at the Mater Hospital (Brisbane) between November 2016 and January 2020. For the current analysis, data included responses on agenda-setting and outcomes from three validated questionnaires. RESULTS: Responses of 277 young adults (15-26 years) were analysed. Ninety-four (34%) reported one to three agenda item(s). Common agenda items were diabetes technology and medications, but other topics raised included pregnancy, body image and eating concerns. Participants with moderate diabetes distress or anxiety symptoms were more likely to list at least one agenda item (P = 0.006; P = 0.002), as were females and older participants. CONCLUSION: Several agenda items for young adults with type 1 diabetes were identified and were more likely to be raised by those with elevated diabetes distress and anxiety symptoms. The DPAT is a valuable and convenient tool that can be easily applied in routine clinical practice to enable clinicians to understand the concerns of the young adult population and deliver personalised medicine to optimise long-term outcomes.


Assuntos
Diabetes Mellitus Tipo 1 , Feminino , Humanos , Adulto Jovem , Masculino , Diabetes Mellitus Tipo 1/complicações , Depressão/epidemiologia , Ansiedade/epidemiologia , Inquéritos e Questionários , Apoio Social
12.
J Med Internet Res ; 25: e44002, 2023 12 14.
Artigo em Inglês | MEDLINE | ID: mdl-38096018

RESUMO

BACKGROUND: Emerging research suggests that open-source automated insulin delivery (AID) may reduce diabetes burden and improve sleep quality and quality of life (QoL). However, the evidence is mostly qualitative or uses unvalidated, study-specific, single items. Validated person-reported outcome measures (PROMs) have demonstrated the benefits of other diabetes technologies. The relative lack of research investigating open-source AID using PROMs has been considered a missed opportunity. OBJECTIVE: This study aimed to examine the psychosocial outcomes of adults with type 1 diabetes using and not using open-source AID systems using a comprehensive set of validated PROMs in a real-world, multinational, cross-sectional study. METHODS: Adults with type 1 diabetes completed 8 validated measures of general emotional well-being (5-item World Health Organization Well-Being Index), sleep quality (Pittsburgh Sleep Quality Index), diabetes-specific QoL (modified DAWN Impact of Diabetes Profile), diabetes-specific positive well-being (4-item subscale of the 28-item Well-Being Questionnaire), diabetes treatment satisfaction (Diabetes Treatment Satisfaction Questionnaire), diabetes distress (20-item Problem Areas in Diabetes scale), fear of hypoglycemia (short form of the Hypoglycemia Fear Survey II), and a measure of the impact of COVID-19 on QoL. Independent groups 2-tailed t tests and Mann-Whitney U tests compared PROM scores between adults with type 1 diabetes using and not using open-source AID. An analysis of covariance was used to adjust for potentially confounding variables, including all sociodemographic and clinical characteristics that differed by use of open-source AID. RESULTS: In total, 592 participants were eligible (attempting at least 1 questionnaire), including 451 using open-source AID (mean age 43, SD 13 years; n=189, 41.9% women) and 141 nonusers (mean age 40, SD 13 years; n=90, 63.8% women). Adults using open-source AID reported significantly better general emotional well-being and subjective sleep quality, as well as better diabetes-specific QoL, positive well-being, and treatment satisfaction. They also reported significantly less diabetes distress, fear of hypoglycemia, and perceived less impact of the COVID-19 pandemic on their QoL. All were medium-to-large effects (Cohen d=0.5-1.5). The differences between groups remained significant after adjusting for sociodemographic and clinical characteristics. CONCLUSIONS: Adults with type 1 diabetes using open-source AID report significantly better psychosocial outcomes than those not using these systems, after adjusting for sociodemographic and clinical characteristics. Using validated, quantitative measures, this real-world study corroborates the beneficial psychosocial outcomes described previously in qualitative studies or using unvalidated study-specific items.


Assuntos
Diabetes Mellitus Tipo 1 , Hipoglicemia , Adulto , Humanos , Feminino , Masculino , Insulina/uso terapêutico , Diabetes Mellitus Tipo 1/tratamento farmacológico , Diabetes Mellitus Tipo 1/psicologia , Qualidade de Vida/psicologia , Estudos Transversais , Pandemias , Hipoglicemia/tratamento farmacológico , Inquéritos e Questionários
13.
J Clin Nurs ; 32(19-20): 7101-7124, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37353963

RESUMO

BACKGROUND AND AIMS: Unmet supportive care needs (SCN) refer to perceived gaps in the support parents want to manage caregiving activities for children with chronic health conditions (CHC) and the support received. This review aims to systematically identify the unmet SCN of families with children living with five common paediatric CHC and characterise the assessment tools used to measure SCN. DESIGN: Systematic review methodology with narrative synthesis of data. Reporting followed the PRISMA statement guidelines. METHOD: Literature searches were conducted in electronic databases Medline complete, PsycINFO, CINHAL and EMBASE to retrieve relevant articles published between 1990 and July 2022. Eligible studies involved (i) children aged 0-18 years diagnosed with either of cancer, congenital heart disease (CHD), diabetes, asthma, renal disease and (ii) assessment of unmet SCN. Studies involving children with genetic or developmental conditions were excluded. The methodological quality of studies was assessed using JBI assessment tool. RESULTS: Of 6223 articles screened, 34 papers were included (25 quantitative, 5 qualitative and 4 mixed design). Most papers explored unmet needs of families with cancer (n = 26). The remaining articles concerned CHD (n = 5), asthma (n = 2) and mixed CHC (n = 1, renal failure, and diabetes). Information (e.g. treatment, lifestyle, etc.) and health care (e.g. emotional support, practical services, etc.) were the most common unmet need domains across health conditions. A variety of methods and need assessments hampered comparisons between studies both across and within CHC. CONCLUSION: Irrespective of illness, addressing unmet informational or health care needs may help to optimise outcomes and care for children and families living with common CHC. There was considerable variation in reporting styles, study design and need assessments both within and across conditions. RELEVANCE TO CLINICAL PRACTICE: Health care professionals must routinely evaluate the type, quality and quantity of psychoeducation and support that families of children with CHC want and receive. Providing nurses with more effective strategies to assess child and family needs across a broad range of domains may help to increase understanding of where further support for families is required. PATIENT OR PUBLIC CONTRIBUTION: There was no patient or public contribution to this study as it involved a systematic review of existing literature.


Assuntos
Diabetes Mellitus , Neoplasias , Humanos , Criança , Cuidados Paliativos/psicologia , Atenção à Saúde , Neoplasias/psicologia , Doença Crônica , Necessidades e Demandas de Serviços de Saúde
14.
Diabet Med ; 39(1): e14676, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34432909

RESUMO

BACKGROUND AND AIMS: The prevalence of sexual dysfunctions in people with diabetes is still debated and understudied in women. This study examines the prevalence of sexual dysfunction in men and women with type 1 or type 2 diabetes (T1D or T2D) and the associations with clinical and psychological variables. METHODS: Adults with diabetes (n = 756) completed an online survey including questions on sexual functioning (adapted Short Sexual Functional Scale), general emotional well-being (WHO-5), symptoms of anxiety (GAD-7) and diabetes distress (PAID-20). RESULTS: One third of participants reported a sexual dysfunction. Men reported erectile dysfunction (T1D: 20%; T2D: 33%), and orgasmic dysfunction (T1D: 22%; T2D: 27%). In men, sexual dysfunction was independently associated with, older age (OR = 1.05, p = 0.022), higher waist circumference (OR = 1.04; p < 0.001) and longer duration of diabetes (OR = 1.04; p = 0.007). More men with sexual dysfunction reported diabetes distress (20% vs. 12%, p = 0.026). Women reported decreased desire (T1D: 22%; T2D: 15%) and decreased arousal (T1D: 9%; T2D: 11%). More women with sexual dysfunction reported diabetes distress (36% vs. 21%, p = 0.003), impaired emotional well-being (36% vs. 25%, p = 0.036) and anxiety symptoms (20% vs. 11%, p = 0.026). CONCLUSION: Sexual dysfunctions are common in both men and women with diabetes. In men, sexual dysfunctions were associated with clinical factors. More women with sexual dysfunction reported low emotional well-being and anxiety symptoms compared to women without sexual dysfunction. For both men and women, sexual dysfunctions were associated with diabetes distress.


Assuntos
Diabetes Mellitus Tipo 1/complicações , Diabetes Mellitus Tipo 2/complicações , Emoções/fisiologia , Qualidade de Vida , Comportamento Sexual/psicologia , Disfunções Sexuais Fisiológicas/epidemiologia , Adulto , Áustria/epidemiologia , Estudos Transversais , Diabetes Mellitus Tipo 1/psicologia , Diabetes Mellitus Tipo 2/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos/epidemiologia , Prevalência , Fatores de Risco , Disfunções Sexuais Fisiológicas/etiologia , Disfunções Sexuais Fisiológicas/psicologia
15.
Diabet Med ; 39(5): e14708, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-34599617

RESUMO

AIMS: An emerging group of people with type 1 diabetes are not waiting for commercial solutions, choosing to manage their condition with open-source artificial pancreas systems (APS). Our aim was to explore their perspectives on the future of APS. METHODS: Semi-structured telephone interviews were conducted (in Australia, October 2018 to January 2019) with 23 adults with type 1 diabetes currently using open-source APS. Interviews were recorded, transcribed and analysed thematically. RESULTS: Participants described five key features of open-source APS they value: compatibility, user-led design, customisability, ability to evolve faster and community-driven. They attributed the success of the open-source APS movement to benefits they derive from these features: choice, solutions that meet their needs, ownership, staying one step ahead and real-time support. They expressed hope that future commercial products and healthcare would benefit from their learnings and from collaboration with the open-source APS community. CONCLUSIONS: Participants believed that there will always be a place for the open-source community. It will continue to build on and advance commercial products, respond to user needs, offering a higher degree of control and customisation than afforded by commercial products and generating optimism for the future. Participants desired that future commercial diabetes technologies would be inspired by the open-source community and developed collaboratively with people with diabetes.


Assuntos
Diabetes Mellitus Tipo 1 , Pâncreas Artificial , Adulto , Glicemia , Diabetes Mellitus Tipo 1/tratamento farmacológico , Humanos , Insulina/uso terapêutico , Sistemas de Infusão de Insulina , Pesquisa Qualitativa
16.
Diabet Med ; 39(1): e14706, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34596292

RESUMO

AIM: To conduct a systematic review of published studies reporting on the longitudinal impacts of hypoglycaemia on quality of life (QoL) in adults with type 2 diabetes. METHOD: Database searches with no restrictions by language or date were conducted in MEDLINE, Cochrane Library, CINAHL and PsycINFO. Studies were included for review if they used a longitudinal design (e.g. cohort studies, randomised controlled trials) and reported on the association between hypoglycaemia and changes over time in patient-reported outcomes related to QoL. RESULTS: In all, 20 longitudinal studies published between 1998 and 2020, representing 50,429 adults with type 2 diabetes, were selected for review. A descriptive synthesis following Synthesis Without Meta-analysis guidelines indicated that self-treated symptomatic hypoglycaemia was followed by impairments in daily functioning along with elevated symptoms of generalised anxiety, diabetes distress and fear of hypoglycaemia. Severe hypoglycaemic events were associated with reduced confidence in diabetes self-management and lower ratings of perceived health over time. Frequent hypoglycaemia was followed by reduced energy levels and diminished emotional well-being. There was insufficient evidence, however, to conclude that hypoglycaemia impacted sleep quality, depressive symptoms, general mood, social support or overall diabetes-specific QoL. CONCLUSIONS: Longitudinal evidence in this review suggests hypoglycaemia is a common occurrence among adults with type 2 diabetes that impacts key facets in the physical and psychological domains of QoL. Nonetheless, additional longitudinal research is needed-in particular, studies targeting diverse forms of hypoglycaemia, more varied facets of QoL and outcomes assessed using hypoglycaemia-specific measures.


Assuntos
Diabetes Mellitus Tipo 2/complicações , Hipoglicemia/psicologia , Qualidade de Vida , Autocuidado , Adulto , Saúde Global , Humanos , Hipoglicemia/epidemiologia , Hipoglicemia/etiologia , Incidência , Estudos Longitudinais
17.
Diabet Med ; 39(11): e14945, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-36004677

RESUMO

AIMS: Racial and ethnic disparities exist in gestational diabetes prevalence and risk of subsequent type 2 diabetes mellitus (T2DM). Postpartum engagement in healthy behaviours is recommended for prevention and early detection of T2DM, yet uptake is low among women from diverse cultural backgrounds. Greater understanding of factors impacting postpartum health behaviours is needed. Applying the Theoretical Domains Framework (TDF) and Capability, Opportunity, Motivation-Behaviour (COM-B) model, our aim was to synthesise barriers to and enablers of postpartum health behaviours among women from diverse cultural backgrounds with prior GDM and identify relevant intervention components. METHODS: Databases, reference lists and grey literature were searched from September 2017 to April 2021. Two reviewers screened articles independently against inclusion criteria and extracted data. Using an inductive-deductive model, themes were mapped to the TDF and COM-B model. RESULTS: After screening 5148 citations and 139 full texts, we included 35 studies (N = 787 participants). The main ethnicities included Asian (43%), Indigenous (15%) and African (11%). Barriers and enablers focused on Capability (e.g. knowledge), Opportunity (e.g. competing demands, social support from family, friends and healthcare professionals, culturally appropriate education and resources) and Motivation (e.g. negative emotions, perceived consequences and necessity of health behaviours, social/cultural identity). Five relevant intervention functions are identified to link the barriers and enablers to evidence-based recommendations for communications to support behaviour change. CONCLUSIONS: We provide a conceptual model to inform recommendations regarding the development of messaging and interventions to support women from diverse cultural backgrounds in engaging in healthy behaviours to reduce risk of T2DM.


Assuntos
Diabetes Mellitus Tipo 2 , Diabetes Gestacional , Cultura , Diabetes Mellitus Tipo 2/epidemiologia , Diabetes Mellitus Tipo 2/prevenção & controle , Diabetes Gestacional/epidemiologia , Feminino , Comportamentos Relacionados com a Saúde , Humanos , Motivação , Período Pós-Parto , Gravidez , Pesquisa Qualitativa
18.
Diabet Med ; 39(4): e14772, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-34953147

RESUMO

AIMS: Women with prior gestational diabetes have nearly 10 times the risk of developing type 2 diabetes. Postpartum screening for type 2 diabetes is recommended for early diagnosis and management, yet uptake is low. This work updates a previous systematic review and advances it through the application of the Theoretical Domains Framework (TDF) to synthesise personal-level factors impacting type 2 diabetes screening and the Capability, Opportunity, Motivation-Behaviour model (COM-B), to develop messaging recommendations for use in clinical practice and screening promotion interventions. METHODS: We searched seven academic databases from September 2017 (prior review) to April 2021, reference lists and grey literature. Two reviewers independently screened articles against inclusion criteria (qualitative studies exploring factors impacting postpartum diabetes screening, any language) and extracted data. Using an inductive-deductive model, we coded determinants to the TDF and mapped onto the COM-B model. RESULTS: We identified 38 eligible papers from 34 studies (N = 1291 participants). Most (71%) reported sample sizes of N ≥ 16. The ratio of barriers to enablers was three to one. Eight key TDF domains were identified. Evidence-based recommendations include addressing knowledge, risk perception, fear of diabetes diagnosis, low prioritisation of personal health and fatalism. The risk of bias was low and confidence in findings was moderate to high. A limitation was conceptual overlap between TDF domains, which we addressed via the study procedure. CONCLUSIONS: The theoretical categorisation of determinants enables the development of messaging and interventions at the personal level, to promote women's uptake of postpartum type 2 diabetes screening.


Assuntos
Diabetes Mellitus Tipo 2 , Diabetes Gestacional , Diabetes Mellitus Tipo 2/diagnóstico , Diabetes Mellitus Tipo 2/epidemiologia , Diabetes Gestacional/diagnóstico , Feminino , Humanos , Masculino , Programas de Rastreamento , Motivação , Gravidez , Pesquisa Qualitativa
19.
Diabet Med ; 39(1): e14727, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34668230

RESUMO

OBJECTIVE: Hypoglycaemic episodes and fear of hypoglycaemia can be burdensome for adults with type 1 diabetes. This study explored support needs relating to hypoglycaemia among adults with type 1 diabetes living in Denmark, Germany, the Netherlands and the United Kingdom. RESEARCH DESIGN AND METHODS: Respondents participated in a web-based qualitative study involving four open-ended questions that asked what they wished other people understood about hypoglycaemia and what other people could do differently to support them with hypoglycaemia. Responses were analyzed using reflexive thematic analysis. RESULTS: Participants were 219 adults with type 1 diabetes (mean ± SD age 39 ± 13 years; mean ± SD diabetes duration 20 ± 14 years). They described unmet needs relating to: (1) Clinical support, involving access to new diabetes technologies, training on hypoglycaemia prevention, personalised care and psychological support; (2) Practical support, involving family and friends better supporting them with hypoglycaemia management and prevention; (3) Education for other people, involving others becoming more informed about hypoglycaemia; and (4) An appreciation of the burden, involving others recognizing the experience and impact of episodes, and the burden of living with the risk of hypoglycaemia. CONCLUSIONS: Adults with type 1 diabetes report several unmet support needs relating to hypoglycaemia. Service delivery should be person-centred and prioritise the individual's support needs. Clinical conversations are needed to identify the individual's support needs and develop tailored support plans. People with diabetes and their family members should be offered hypoglycaemia-specific education and training.


Assuntos
Diabetes Mellitus Tipo 1/tratamento farmacológico , Insulina/administração & dosagem , Internet , Pesquisa Qualitativa , Adolescente , Adulto , Idoso , Diabetes Mellitus Tipo 1/epidemiologia , Família , Feminino , Alemanha/epidemiologia , Humanos , Hipoglicemiantes/administração & dosagem , Masculino , Pessoa de Meia-Idade , Morbidade/tendências , Países Baixos/epidemiologia , Qualidade de Vida , Reino Unido/epidemiologia , Adulto Jovem
20.
Pediatr Diabetes ; 23(3): 390-405, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-34981624

RESUMO

This systematic review aims to summarize and critically evaluate the current evidence regarding the impact of hypoglycaemia in children and adolescents with type 1 diabetes on parental quality of life. MEDLINE, PsycINFO, CINAHL, and the Cochrane Library were searched. Inclusion criteria were: 1) quantitative design, 2) included parents of children or adolescents with type 1 diabetes, 3) assessment of hypoglycemia in children/adolescents with type 1 diabetes, 4) assessment of parent quality of life (or related domains of life), and 5) analysis of the relationship(s) between the child's hypoglycaemia and parents' quality of life. The data were summarised in accordance with Synthesis Without Meta-Analysis Guidelines. Twelve studies were included, reporting data from 1895 parents across six countries. Ten studies were cross-sectional; two included prospective data. Evidence suggested that greater frequency and severity of hypoglycemia was associated with greater parental fear of hypoglycemia, emotional distress and family burden. Children's hypoglycaemia has a negative impact on the well-being of parents, but there is an absence of evidence regarding the impact on their overall quality of life. Research into the hypoglycaemia-specific quality of life of parents is needed to explore the impact on various areas, such as social and physical dimensions.


Assuntos
Diabetes Mellitus Tipo 1 , Hipoglicemia , Adolescente , Criança , Diabetes Mellitus Tipo 1/complicações , Diabetes Mellitus Tipo 1/psicologia , Humanos , Hipoglicemia/psicologia , Pais/psicologia , Estudos Prospectivos , Qualidade de Vida
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