How Do the Challenges of Emerging Adulthood Inform our Understanding of Diabetes Distress? An Integrative Review

Wentzell, Katherine; Vessey, Judith A.; Laffel, Lori M.

doi:10.1007/s11892-020-01301-3

Cited by 31 publications

(52 citation statements)

References 70 publications

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“…Due to the nature of the disease, self management extends beyond glycaemic control and other biomedical outcomes, also affecting emotional health and social functioning 1 . Finding a balance between diabetes and living can be challenging regardless of age but especially so in young adulthood 2 . Experiences of burden, stress, anxiety and/or concern that arise from daily self management are referred to as diabetes distress 3 .…”

Section: Introductionmentioning

confidence: 99%

“…About one‐third of adults with type 1 diabetes will experience distress levels likely to impact on self management and clinical outcomes 4 . Furthermore, diabetes distress is more prevalent in younger adults than other age groups 2 and associated with problematic self management behaviours and poor glycaemic control 5,6 . However, achieving recommended glucose targets does not necessarily exclude distress 3 .…”

Section: Introductionmentioning

confidence: 99%

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Young adults with type 1 diabetes and their experiences with diabetes follow‐up and participation in the DiaPROM pilot trial: A qualitative study

et al. 2021

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Aim To explore young adults' experiences of outpatient follow‐up appointments, completing electronic Patient‐Reported Outcome Measures (PROMs), and using the Problem Areas In Diabetes (PAID) scale during the Diabetes Patient‐Reported Outcome Measures (DiaPROM) pilot trial. Methods We performed a qualitative study among 19 young adults (aged 22–39 years) with type 1 diabetes who participated in the pilot trial. Between February and June 2019, we conducted individual, semi‐structured telephone interviews with participants from the intervention and control arms. We analysed the data using thematic analysis. Results Our analyses generated three themes, each with two subthemes: (1) Follow‐up with limitations; (i) Marginal dialogue about everyday challenges, (ii) Value of supportive relationships and continuity, indicate that previous follow‐up had been experienced as challenging and insufficient. (2) New insights and raised awareness; (i) More life‐oriented insights, (ii) Moving out of the comfort zone, suggest mostly positive experiences with completing questionnaires and discussing the PAID scores. (3) Addressing problem areas with an open mind; (i) Need for elaboration, (ii) Preparedness for dialogue, indicate that both openness and explanations were vital in the follow‐up. Conclusions Participants characterised the previous follow‐up as challenging and insufficient. They described completing and using the PAID as somewhat uncomfortable yet worthwhile. Our findings also suggest that by utilising diabetes distress data alongside health and biomedical outcomes, consultations became more attuned to the young adults' wishes and needs, mainly because the dialogue was more focused and direct. Hence, the PAID has the potential to facilitate person‐centredness and improve patient–provider relationships.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Young adults with type 1 diabetes and their experiences with diabetes follow‐up and participation in the DiaPROM pilot trial: A qualitative study

et al. 2021

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“…The correlation coefficient between baseline and follow-up DDS scores was 0.8 (95% CI: 0.7 to 0.9) (online supplemental table 3). In addition, 18/33 (54.5%) and 11/26 (42.3%) intervention arm participants reported moderate to high distress measured by the DDS overall score at baseline (1)(2)(3)(4)(5)(6). ¶Differences between intervention and control arm.…”

Section: Outcome Measuresmentioning

confidence: 99%

“…2 During emerging and young adulthood, multiple transitions and developmental stressors can trigger additional self-management difficulties. 3 Despite advancements in glucose monitoring, insulin therapy and insulin delivery devices, the burden of living with T1D remains a significant challenge. 4 5 Only 20%-30% of young adults with T1D achieve recommended glycaemic treatment goals.…”

mentioning

confidence: 99%

“…17 In T1D studies, regimen distress, fear of hypoglycaemia and complications, feeling overwhelmed and worrying about the future is most commonly reported. 18 Furthermore, diabetes distress is more prevalent among younger than older adults 3 and associated with problematic self-management behaviours related to insulin treatment, glucose monitoring and unsatisfactory glycaemic control. [19][20][21][22] Regimen distress appears to drive these associations.…”

mentioning

confidence: 99%

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Use of patient-reported outcome measures (PROMs) in clinical diabetes consultations: the DiaPROM randomised controlled pilot trial

et al. 2021

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ObjectiveTo pilot test the proposed DiaPROM trial components and address uncertainties associated with conducting a full-scale randomised controlled trial (RCT) to evaluate whether such a trial is feasible.DesignTwo-arm pilot RCT.ParticipantsAdults aged ≥18–39 years, with minimum 1 year type 1 diabetes duration, attending outpatient follow-up. Exclusion criteria were pregnancy, severe cognitive, somatic or psychiatric conditions and impaired vision.Randomisation and interventionAll participants completed electronic Patient-Reported Outcome Measures (PROMs) prior to the annual diabetes consultation. Using computer-generated block-randomisation without blinding, we assigned participants in a 1:1 ratio stratified by sex to receive standard care or an intervention. Physicians reviewed diabetes distress scores (Problem Areas In Diabetes scale) and referred individuals with scores ≥30 or single item(s) ≥3 to minimum two diabetes nurse consultations where reported problems were reviewed and discussed.OutcomesRecruitment and retention rates; participants perceptions about intervention components. Variance and estimated between-group differences in follow-up scores (Diabetes Distress Scale (DDS), WHO 5-Well-being Index, Perceived Competence for Diabetes Scale and glycaemic control) and DDS correlation with baseline scores, to assist sample size calculations.ResultsWe randomised 80 participants to the control or intervention arm (one participant was later excluded). 23/39 intervention arm participants qualified for additional consultations and 17 attended. 67/79 attended the 12-month follow-up (15.2% attrition); 5/17 referred to additional consultations were lost to follow-up (29.4% attrition). Participants reported PROMs as relevant (84.6%) and acceptable (97.4%) but rated the usefulness of consultations as moderate to low. Baseline mean±SD DDS score was 2.1±0.69; DDS SD was 0.71 (95% CI: 0.60 to 0.86) at follow-up; correlation between baseline and follow-up DDS scores was 0.8 (95% CI: 0.7 to 0.9).ConclusionsThe pilot trial revealed need for intervention modifications ahead of a full-scale trial to evaluate use of PROMs in diabetes consultations. Specifically, participant acceptability and intervention implementation need further investigation.

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Global stress and daily general and type 1 diabetes stressors and links to daily affect and diabetes outcomes during emerging adulthood

Berg,

Tracy,

Boggess

et al. 2023

J Behav Med

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How Do the Challenges of Emerging Adulthood Inform our Understanding of Diabetes Distress? An Integrative Review

Cited by 31 publications

References 70 publications

Young adults with type 1 diabetes and their experiences with diabetes follow‐up and participation in the DiaPROM pilot trial: A qualitative study

Young adults with type 1 diabetes and their experiences with diabetes follow‐up and participation in the DiaPROM pilot trial: A qualitative study

Use of patient-reported outcome measures (PROMs) in clinical diabetes consultations: the DiaPROM randomised controlled pilot trial

Global stress and daily general and type 1 diabetes stressors and links to daily affect and diabetes outcomes during emerging adulthood

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