Measuring outcomes of transition programs Kathy Nixon Speechley Professor, Paediatrics, Epidemiology & Biostatistics, Western University Scientist, Division Chair, Children’s Health Research Institute Assistant Director, Lawson Health Research Institute London, Ontario, Canada
Presenter Disclosure Faculty: Kathy Nixon Speechley • Relationships with financial sponsors: • Grants/Research Support: CIHR Children’s Health Research Institute/ Children’s Health Foundation, London. ON Disclosure of Financial Support: • None to report
Outline • Current state of knowledge regarding measuring outcomes of transition programs • Describe steps required to measure outcomes of transition along with resources available to guide this process
Current Status • Considerable literature on issue of transition • Limited empirical evidence on outcomes of transition programs • Cochrane review (Campbell et al, 2016) Evaluate effectiveness of interventions designed to improve transition of care
AUTHORS’ CONCLUSIONS: four small studies “The available evidence (four small studies; N = 238), covers a limited range of interventions developed to facilitate transition in a limited a limited range of interventions number of clinical conditions, with only four to 12 months follow-up. a limited number of clinical conditions These follow-up periods may not be long enough for any changes to become apparent as transition is a lengthy process. Evidence of only four to 12 months follow-up - follow-up periods improvement in patients' knowledge of their condition in one study, and may not be long enough for any changes to become “Further research is very likely to have an important impact on improvements in self-efficacy and confidence in another. However, few apparent our confidence in the intervention effect and likely could change our conclusions . Considerable scope for the rigorous evaluation studies eligible for review and overall certainty of the body of this of other models of transitional care, reporting on clinical Evidence of improvement in patients' evidence is low, no firm conclusions can be drawn about the effectiveness outcomes with longer term follow- up.” knowledge of their condition of the evaluated interventions. Further research is very likely to have an improvements in self-efficacy and important impact on our confidence in the intervention effect and likely confidence overall certainty of the body of this could change our conclusions. Considerable scope for the rigorous evidence is low , no firm conclusions can be evaluation of other models of transitional care, reporting on clinical drawn outcomes with longer term follow- up.”
2017
Methodology in comparative studies… a systematic review • 39 studies reviewed; 26 with final results published • Included quantitative studies that collected data at least in part after the transfer & compared outcomes either between intervention & control group OR between pre- & post-intervention in single group. Randomized control groups used in 23% • Conclusions: few evaluative studies; methodological quality variable • Making conclusions on effectiveness of interventions challenging: o Complexity of interventions o Multiple outcomes o Difficulty blinding o Small sample sizes
“Despite the wealth of literature concerning aspects of transitional care that are key to a successful transition for young people with JIA or epilepsy, there is a paucity of there is a paucity of outcomes that define ‘successful’ transition and consequently a lack of reliable research outcomes that define ‘successful’ transition and consequently evaluating the effectiveness of transitional care a lack of reliable research evaluating the effectiveness of interventions to support young people moving to adult health services transitional care interventions to support young people moving to adult health services.”
Currently … • Little empirically derived assessment of outcomes • Assessments that have been done limited by methodology making it difficult to draw conclusions
What is Required? • To develop effective transition services requires accepting challenge of mounting rigorous evaluations of typically complex interventions designed to improve transition • Multiple calls to action to improve quality of research e.g. Fletcher-Johnston et al (2011); Le Roux et al (2017); Gabriel et al (2017); Burke et al (2018); Prior et al (2018) • Sound advice exists re: essential components this challenge entails (guidelines, recommendations, consensus statements) • Opportunity to engage in strategic initiatives based on sound principles
Definition & Outcomes to Measure • First agree on: WHAT to measure? Then: HOW to measure? • What is successful transition? Answer is necessary to: o move research priorities forward o facilitate evaluation of transition processes & o empirical determination of best practices
Delphi Study Details • diverse panel of experts engaged to reach consensus on key elements of a transition program & indicators to use to assess success • 3 rounds online surveys. Each 2 parts: key elements of transition program & indicators (quantifiable chars.) to describe transition as successful • Began with list of 34 elements and 32 indicators from lit. review. Options: remain unchanged; remove; re-formulate; merge with another key element/indicator. Space to add rationale. 2 nd round rated on importance from “not at all” to “very” • 3 rd round: 5-pt Likert-like scale: Essential to unnecessary (should be • removed) • Predefined a 70% agreement as minimal consensus as in literature
6 Key Elements Finally Retained ESSENTIAL ELEMENTS % Assuring good coordination between pediatric and adult 97 professionals Starting planning transition at an early age 77 Discussing with patient and Family about self-management 74 Including young person's views and preferences to the 74 planning of transition If developmentally appropriate, seeing the adolescent alone 71 at least for part of the transition Identifying an adult professional willing to take on the young 71 person
8 Indicators finally retained Essential Essential+ (%) very Important (%) Patient not lost to follow-up 91 Attending scheduled visits in adult care 63 94 Patient building a trusting relationship with adult 43 86 provider Continuing attention for self management 49 86 Patients' first visit in adult care no later than 3-6mo. 60 83 Number of ER visits for regular care in the past year 40 80 Patient and family satisfaction with transfer of care 34 74 Maintenance/ improvement of standard for disease 37 71 control evaluation
Key Themes from process 1. need to consider specific characteristics of different diseases e.g. indicator of Pt’s first visit in adult care no later than 3-6 mo should likley be different depending on disease 2. respect differences across countries & adapt to local practices and resources (e.g. “# ER visits for regular care“) 3. several key elements were considered indicators of good care in general and not specific to transition 4. issue of good coordination between paediatric and adult services appeared almost constantly (key is collaboration) 5. Surprising result : an important part of transition is helping youth reach full potential but consensual elements mainly limited to health outcomes and less holistic
Additional Considerations • Strategic to understand how youth & multiple partners supporting transition define success; what defines successful transition is dependent on stakeholder perspective (Burke et al, 2018 • Evaluate consensus results within context of patient and family perspective
Categorize Outcomes by Time Process of transition: o Transition readiness scores o Level of self management o Adherence Short-term Outcomes: o Not lost to follow-up Longer-term Outcomes: o Patient- reported outcomes
Conceptual Frameworks • Given that transition is complex & requires multi-faceted measurement, important to employ a conceptual framework (Prior et al, 2018; Gorter et al, 2014) • Employing framework key foundation for evaluation (CAPHC Guideline for Transition, 2016) Two examples: • Triple aim Framework (Institute for Health Care Improvement) • International Classification of Functioning, Disability & Health Framework (ICF) (WHO)
Triple Aim Framework Population Health Patient Experience of Care Adherence to care guidelines Satisfaction Disease-specific outcome Barriers to Care Mortality Enablers Patient-reported outcomes (QOL & functional status) Self-care skills Process of care Cost Gaps in care Cost of no shows Cost per patient Service use-- short-term & longitudinally Accessing outpatient vs. emergency vs. inpatient care
Value of Conceptual Framework Frame transition measurement in terms of linked goals o key when measuring complex concept but rarely done (Prior et al, 2015) e.g. Triple aim: population health, patient experience & cost o conceptualiziing linked goals offers opportunity to align transition intervention with system-wide improvements in health care • Recognize how interconnected, overlapping and contextually sensitive components such as relationships, opportunity & experience impact outcomes as part of developmental process or trajectory.
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