Center-Based Quality Initiative Targets Youth Preparedness for Medical Independence:<i>HEMO-Milestones Tool</i>in a Comprehensive Hemophilia Clinic Setting

Croteau, Stacy E.; Padula, Maura; Quint, Kate; D'Angelo, Loren; Neufeld, Ellis J.

doi:10.1002/pbc.25807

Cited by 8 publications

(15 citation statements)

References 15 publications

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“…As adherence is particularly challenged during the transition to self‐care, intensified support is suggested in YWH . It is stressed, however, that education in self‐care should start prior to puberty when patients are more open‐minded . One study showed that while the first steps in self‐management were taken around the age of 12, it took almost ten years with gradual acquirement of more complex skills before complete self‐management was achieved .…”

Section: Resultsmentioning

confidence: 99%

“…Recent publications recapitulate the recommendations for HCP to deal with the specific challenges for each phase of life with self‐management education of caregivers and patients starting as early as possible . It is noticeable that while parents and HCP often focus on smoothing out cultural differences between paediatric and adult care, YWH emphasize a preference for being well prepared for the shift from family‐centred to individual‐centred care, for example, through joint meetings with paediatric and adult HCP, visits to the adult care clinic, and seeing HCPs alone prior to the final transition …”

Section: Resultsmentioning

confidence: 99%

“…Among haemophilic patients in the Western world, adolescents (13‐17‐year‐olds) and young adults (18 to 25‐30‐year‐olds depending on the study) reportedly have the lowest adherence levels compared to other age groups . These patients go through major physical and psychosocial changes challenging the transition to self‐care …”

Section: Introductionmentioning

confidence: 99%

“…Haemophilia treatment centres (HTC) are variously organized creating different challenges to transition support . In clinical practice, a systematic approach to transition is rarely used, however, and there is little evidence on best practices . The present qualitative review examined adherence to PTX in YWH .…”

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Adherence to prophylactic haemophilic treatment in young patients transitioning to adult care: A qualitative review

Mortensen¹,

Strand²,

Almén³

2018

Haemophilia

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Recombinant prophylactic treatment (PTX) has greatly improved morbidity, mortality and health‐related quality of life (HRQoL) in patients with severe haemophilia. Yet, treatment adherence appears suboptimal in adolescents and young adults with haemophilia (YWH). Young patients experience major biopsychosocial changes challenging their adherence through the transition from parental to self‐care, from paediatric to adult care. In clinical practice, a systematic approach to transition is rarely used and there is little evidence on best practices. This qualitative review was based on a systematic literature search including quantitative as well as qualitative research reports to examine all relevant factors influencing adherence to PTX in YWH. We aimed to gain comprehensive insight into main drivers and barriers to adherence by exploring them in the context of YWH’s disease perceptions, characteristics, HRQoL and needs. The outcome is an overview of the latest published recommendations to support treatment adherence in YWH during the transition from family‐oriented care to self‐care and from paediatric to adult care. The literature suggests that adherence to PTX is best supported when individual patient needs and preferences are taken into consideration when planning treatment. Preserving normality is a main priority in young patients making it crucial to support patients from early childhood in considering PTX as enabling rather than hindering a normal social and physically active life. Education in self‐management should include psychosocial support of patients as well as caregivers. This requires systematic transition planning including milestone assessments and ongoing multidisciplinary support until full self‐management is secured.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Adherence to prophylactic haemophilic treatment in young patients transitioning to adult care: A qualitative review

Mortensen¹,

Strand²,

Almén³

2018

Haemophilia

View full text Add to dashboard Cite

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“…An efficient dosing program tailored according to patient clinical needs and desires, together with increasing patient empowerment, shared decision making and self-management [44,45], are likely to minimize bleeding events and their complications without uncontrolled increases in healthcare costs. In contrast to 'individualized' prophylaxis [16,17,19,39,46,47], which has already represented an improvement over standard 'one size fits all' dosing, 'patient-centric prophylaxis' integrates patient outcomes and provides the opportunity to flexibly tailor the therapy on an ongoing basis through patient self-management.…”

Section: Innovative Clinical Modelmentioning

confidence: 99%

An innovative outcome-based care and procurement model of hemophilia management

Gringeri¹,

Doralt²,

Valentino

et al. 2016

Expert Review of Pharmacoeconomics & Outcomes Research

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Hemophilia is a rare bleeding disorder associated with spontaneous and post-traumatic bleeding. Each hemophilia patient requires a personalized approach to episodic or prophylactic treatment, but selfmanagement can be challenging for patients, and avoidable bleeding may occur. Patient-tailored care may provide more effective prevention of bleeding, which in turn, may decrease the likelihood of arthropathy and associated chronic pain, missed time from school or work, and progressive loss of mobility. A strategy is presented here aiming to reduce or eliminate bleeding altogether through a holistic approach based on individual patient characteristics. In an environment of budget constraints, this approach would link procurement to patient outcome, adding incentives for all stakeholders to strive for optimal care and, ultimately, a bleed-free world.ARTICLE HISTORY

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Health Services Interventions to Improve the Quality of Care in Rare Disease: A Scoping Review

Chou,

Wiredu,

Imhof

et al. 2024

Preprint

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BackgroundRare diseases are often complex, multi-system disorders requiring specialized, lifelong care. These diseases share significant challenges in healthcare delivery, including diagnostic delays, limited access to specialists, and lack of effective treatments.ObjectivesTo aggregate and critically examine innovative health services interventions for rare diseases, with the goal of identifying effective, scalable strategies to improve careDesignScoping reviewData SourcesComprehensive searches were conducted in April 2022 in Ovid MEDLINE,Embase.com, Web of Science Core Collection, Cochrane CENTRAL, andClinicalTrials.gov.MethodsWe sought to identify peer-reviewed original research published in English reporting results of interventions to improve guideline-concordant care, care coordination, and care transitions in rare disease populations. Using Covidence software, two researchers independently screened abstracts using pre-established inclusion and exclusion criteria, with conflicts resolved through consensus discussion with a third researcher. The same process was used to screen full-text research for eligibility and to extract study characteristics and results from eligible research.ResultsOur search identified 2899 articles. After screening for eligibility criteria, 12 articles describing health services interventions in rare diseases were identified. Most studies were conducted in Europe and involved adult participants. Three main intervention targets were identified: 1) increasing patients’ access to multidisciplinary expertise (e.g. using expert panels/tumor boards, integrating additional disciplines into care teams, and creating a hotline for specialist advice); 2) using technology to give point-of-care physicians access to information (e.g., electronic medical record templates/decision-support), and 3) standardizing care through clinical care pathways.ConclusionsThis review identified several efficacious interventions to improve healthcare delivery for individuals with a single rare disease. Testing these strategies across broader groups of rare disease patients could more efficiently improve healthcare delivery for the rare disease community, facilitating patients’ timely access to treatments, improving their health outcomes, and potentially reducing healthcare costs with economies of scale.Plain Language SummaryWhy was this study done?While each rare disease is unique and affects only a small number of individuals, the rare disease community as a whole faces similar challenges seeking healthcare, such as delayed diagnosis, limited access to specialists, and insufficient treatment options. This study seeks to find innovative strategies to enhance healthcare delivery that have been tested in at least one rare disease that might be applicable across a broad spectrum of these conditions.What did the researchers do?We reviewed public reports of research that aimed to improve guideline-concordant care, care coordination, or care transitions for people with rare diseases. At least two researchers screened each paper to assess whether it met inclusion and exclusion criteria, and all conflicts were resolved by consensus discussion.What did we find?After searching 2899, we found 12 describing successful interventions for people with rare diseases. These interventions either 1) increased patients’ access to multidisciplinary expertise (through things like expert review panels, integrating pharmacists into the care team, or creating a specialist hotline); 2) used technology to facilitate physicians access to rare disease information (through things like electronic medical record templates and alerts); or 3) standardize care delivery through creating set clinical pathways.What do these findings mean?These results highlight how efforts to improve access to multidisciplinary experts, implement new technology, and standardize care for rare disease could be used to develop impactful healthcare interventions that are transferable across multiple rare diseases.

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Center-Based Quality Initiative Targets Youth Preparedness for Medical Independence:HEMO-Milestones Toolin a Comprehensive Hemophilia Clinic Setting

Cited by 8 publications

References 15 publications

Adherence to prophylactic haemophilic treatment in young patients transitioning to adult care: A qualitative review

Adherence to prophylactic haemophilic treatment in young patients transitioning to adult care: A qualitative review

An innovative outcome-based care and procurement model of hemophilia management

Health Services Interventions to Improve the Quality of Care in Rare Disease: A Scoping Review

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