Effectiveness and scalability of an electronic patient-reported outcome measure and decision support tool for family-centred and participation-focused early intervention: PROSPECT hybrid type 1 trial protocol

IntroductionEarly intervention (EI) endorses family-centred and participation-focused services, but there remain insufficient options for systematically enacting this service approach. The Young Children’s Participation and Environment Measure electronic patient-reported outcome (YC-PEM e-PRO) is an evidence-based measure for caregivers that enables family-centred services in EI. The Parent-Reported Outcomes for Strengthening Partnership within the Early Intervention Care Team (PROSPECT) is a community-based pragmatic trial examining the effectiveness of implementing the YC-PEM e-PRO measure and decision support tool as an option for use within routine EI care, on service quality and child outcomes (aim 1). Following trial completion, we will characterise stakeholder perspectives of facilitators and barriers to its implementation across multiple EI programmes (aim 2).Methods and analysisThis study employs a hybrid type 1 effectiveness-implementation study design. For aim 1, we aim to enrol 223 caregivers of children with or at risk for developmental disabilities or delays aged 0–3 years old that have accessed EI services for three or more months from one EI programme in the Denver Metro catchment of Colorado. Participants will be invited to enrol for 12 months, beginning at the time of their child’s annual evaluation of progress. Participants will be randomised using a cluster-randomised design at the EI service coordinator level. Both groups will complete baseline testing and follow-up assessment at 1, 6 and 12 months. A generalised linear mixed model will be fitted for each outcome of interest, with group, time and their interactions as primary fixed effects, and adjusting for child age and condition severity as secondary fixed effects. For aim 2, we will conduct focus groups with EI stakeholders (families in the intervention group, service coordinators and other service providers in the EI programme, and programme leadership) which will be analysed thematically to explain aim 1 results and identify supports and remaining barriers to its broader implementation in multiple EI programmes.Ethics and disseminationThis study has been approved by the institutional review boards at the University of Illinois at Chicago (2020-0555) and University of Colorado (20-2380). An active dissemination plan will ensure that findings have maximum reach for research and practice.Trial registration numberNCT04562038.

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Outsourcing glucose management to AI

Science Translational Medicine ◽

10.1126/scitranslmed.abe8120 ◽

2020 ◽

Vol 12 (564) ◽

pp. eabe8120

Author(s):

James Ankrum

Keyword(s):

Type 1 Diabetes ◽

Decision Support ◽

Insulin Therapy ◽

Intensive Insulin Therapy ◽

Decision Support Tool ◽

Support Tool ◽

Glucose Management

An automated decision support tool could expand access to intensive insulin therapy for patients with type 1 diabetes.

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Patient Input for Design of a Decision Support Smartphone Application for Type 1 Diabetes

Journal of Diabetes Science and Technology ◽

10.1177/1932296819870231 ◽

2019 ◽

Vol 14 (6) ◽

pp. 1081-1087

Author(s):

Leah M. Wilson ◽

Nichole Tyler ◽

Peter G. Jacobs ◽

Virginia Gabo ◽

Brian Senf ◽

...

Keyword(s):

Type 1 Diabetes ◽

Decision Support ◽

Decision Support Tool ◽

Smartphone Application ◽

Valuable Insight ◽

Support Tool ◽

Health Community ◽

Continuous Glucose Monitors ◽

Survey Responses

Background: Decision support smartphone applications integrated with continuous glucose monitors may improve glycemic control in type 1 diabetes (T1D). We conducted a survey to understand trends and needs of potential users to inform the design of decision support technology. Methods: A 70-question survey was distributed October 2017 through May 2018 to adults aged 18-80 with T1D from a specialty clinic and T1D Exchange online health community ( myglu.org ). The survey responses were used to evaluate potential features of a diabetes decision support tool by Likert scale and open responses. Results: There were 1542 responses (mean age 46.1 years [SD 15.2], mean duration of diabetes 26.5 years [SD 15.8]). The majority (84.2%) have never used an app to manage diabetes; however, a large majority (77.8%) expressed interest in using a decision support app. The ability to predict and avoid hypoglycemia was the most important feature identified by a majority of the respondents, with 91% of respondents indicating the highest level of interest in these features. The task that respondents find most difficult was management of glucose during exercise (only 47% of participants were confident in glucose management during exercise). The respondents also highly desired features that help manage glucose during exercise (85% of respondents were interested). The responses identified integration and interoperability with peripheral devices/apps and customization of alerts as important. Responses from participants were generally consistent across stratified categories. Conclusions: These results provide valuable insight into patient needs in decision support applications for management of T1D.

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Factors Affecting Type One Diabetes Self-Management According to Youth and Parents (Preprint)

10.2196/preprints.26595 ◽

2020 ◽

Author(s):

Janet Panoch ◽

Lisa Yazel ◽

Courtney Moore ◽

Sarah Wiehe ◽

Tamara Hannon

Keyword(s):

Type 1 Diabetes ◽

Decision Support ◽

Decision Support Tool ◽

Self Management ◽

Adult Care ◽

Patient Centered ◽

Diabetes Clinic ◽

Human Centered Design ◽

Support Tool

BACKGROUND Adolescents with type 1 diabetes differ from their parents and physicians about what they need from healthcare. Therefore, it is important to implement patient-centered diabetes care for adolescents. OBJECTIVE This study used human-centered design to reveal diabetes self-management challenges faced by youth with type 1 diabetes and their parents. This was a pre-study design phase of a larger study to develop a patient-centered automated decision support tool for diabetes clinic. METHODS Data were collected from youth and parents in two settings 1) a diabetes summer camp to capture challenges faced by youth and parents, 2) youth and parents participating in human-centered design sessions to further explore challenges. RESULTS Fifty-six people completed the camp worksheet, identifying 15 unique themes. The sessions further verified three problematic themes each for youth and parents. Youth generated 23 questions and parents identified 33 questions for potential use for the decision support tool development. CONCLUSIONS Including patient and parent self-management needs is vital. Providers should understand the psychosocial factors associated with barriers to self-management. The incorporation of patient and parent questions, ideas, and subsequent patient-provider communication in the support tool may improve trust in the provider and youth self-efficacy as they navigate the transition to independent adult care. CLINICALTRIAL Trial Registration: ClinicalTrials.gov NCT03084900

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P494 Can Patients Monitor Response To Ustekinumab In The Real World?

Journal of Crohn s and Colitis ◽

10.1093/ecco-jcc/jjab076.617 ◽

2021 ◽

Vol 15 (Supplement_1) ◽

pp. S477-S478

Author(s):

A J Walsh ◽

L Matini ◽

A Kormilitzin ◽

J Wilson ◽

S Lyden ◽

...

Keyword(s):

Abdominal Pain ◽

Real Time ◽

Decision Support Tool ◽

Well Being ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Support Tool ◽

Patient Reported ◽

Reported Data ◽

Over Time

Abstract Background Real time monitoring of patients with Crohn’s disease (CD) gives us the opportunity to examine disease trajectory. We have demonstrated the feasibility of using a monitoring platform with patient reported data, collected prospectively and routinely in clinical practice. The question is whether it can be used for specific drugs Methods TrueColours-IBD (TC-IBD)is a real time, web based platform that through email prompts linked to questionnaires, collects longitudinal patient reported outcome measures (for CD, symptoms measured by Harvey Bradshaw Index (HBI) and quality of life by IBD Control-8). It is routinely used by >2000 patients in Oxford. This study examined 114 patients with Crohn’s: 45 males (median age 36, IQR 28–51) and 69 females (median age 34.8, IQR 28–47), treated with ustekinumab for a maximum of 16 months (range -2 months to 14 months). A linear mixed-effects model was used to approximate longitudinal trends of HBI and IBD Control-8. 3 individual items of the HBI scale (general well-being, abdominal pain & stool frequency) were also assessed. The TC-IBD platform has the capacity to analyse and show patients’ data automatically, using customised models and algorithms through the feedback loop (Fig 1). Model coefficients, intercept and slope were estimated using the restricted maximum likelihood (REML) approach. The intercept corresponds to the expected cohort mean value of the scale (e.g. HBI, IBD Control-8) at baseline (time zero) and the slope describes the rate of the change over time Results The models’ coefficients, the intercept and slope of both HBI and IBD Control-8 scales were statistically significant and are summarised in Table 1 with confidence intervals. Both linear trends (slopes) describing HBI (p<0.001) and IBD Control-8 (p<0.001) confirmed improvements for patients. The bowel movement component of the HBI dominated over general well-being and abdominal pain, while keeping a similar downward trend over time ( Fig 2 and Fig 3a,b) Conclusion Patient reported data through the TC-IBD platform can be used for statistical analyses and continuous monitoring of drug effect over time. This analysis is limited by a lack of comparator group, but the models may be used with the TrueColours platform as a decision support tool for other drugs

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Developing a decision support tool for responding to patients’ reported levels of information needs, family anxiety, depression, and breathlessness.

Journal of Clinical Oncology ◽

10.1200/jco.2014.32.31_suppl.173 ◽

2014 ◽

Vol 32 (31_suppl) ◽

pp. 173-173

Author(s):

Liesbeth van Vliet ◽

Richard Harding ◽

Claudia Bausewein ◽

Sheila Payne ◽

Irene J. Higginson ◽

...

Keyword(s):

Palliative Care ◽

Decision Support ◽

Delphi Study ◽

Information Needs ◽

Clinical Care ◽

Decision Support Tool ◽

Psychosocial Interventions ◽

Social Needs ◽

Support Tool ◽

Patient Reported

173 Background: Routine clinical use of Patient Reported Outcome Measures (PROMs) such as the Palliative Care Outcome Scale (POS) may be prevented by a lack of guidance on how to respond to reported symptoms. When using POS in clinical care, clinicians encounter the most difficulties with responding to information needs, depression and family anxiety while breathlessness remains a difficult to treat symptom. We aimed to create a Decision Support Tool (DST) on how to respond to different levels of these patient-reported symptoms. Methods: A systematic search for guidelines and systematic reviews on these topics was conducted (in Pubmed, Cochrane and York DARE databases, Googlescholar, NICE, National Guideline Clearinghouse, Canadian Medical Association, Google.com). In a two-round online Delphi study purposefully sampled international experts (clinicians, researchers, patient representatives) judged the appropriateness (1-9 scale + do not know option) of drafted recommendations for each POS answer category (0-4) and provided qualitative remarks. Recommendations with a median of 7-9 and <30% of scores between 1-3 and 7-9 were included in the DST. Quality was assessed using an adapted GRADE approach. Results: Twenty-five out of 38 (66%) experts participated in round 1, 23 out of 37 (62%) in round 2. Higher POS scores were related to more included recommendations. The DST consists of both a manual and flow-charts of included recommendations for each topic. Overall, psychosocial interventions were recommended for lower levels of depression and breathlessness than drug interventions (e.g., goal-setting/coping versus morphine for breathlessness). Good communication and emotional support were recommended for low family anxiety levels, but a social needs assessment only for higher levels. For information needs recommendations were least discriminative; almost all recommendations (e.g., assess patients’ understanding of information, show empathy) seemed always relevant. Conclusions: The developed DST can assist clinical responses to patient-reported symptoms in palliative care. Future work is needed to test the effect of using the DST on patients’ outcomes.

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