A Blended Physiotherapy Intervention for Persons With Hemophilic Arthropathy: Development Study

Timmer, Merel A.; Kloek, Corelien; Kleijn, P. de; Kuijlaars, Isolde A R; Schutgens, Roger E. G.; Veenhof, Cindy; Pisters, Martijn F.

doi:10.2196/16631

Cited by 11 publications

(14 citation statements)

References 27 publications

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“…This shows that focus groups can be used to reach a broad range of goals. Examples of these goals include the following: to identify points of improvements of the current situation, such as self-management of patients with chronic obstructive pulmonary disease (COPD) [ 32 ] or care for cerebral palsy [ 33 ]; to discuss the possibilities of a specific technology, such as the values of people with obesity regarding a to-be-developed behavior change intervention [ 79 ]; to gain insight into cognitions such as attitudes toward measures to reduce antimicrobial resistance [ 8 ]; to identify or validate values or requirements with potential end users such as health care providers [ 23 , 93 ]; or to collect input for the improvement of a prototype, for example, for a portal for infection control [ 27 ].…”

Section: Resultsmentioning

confidence: 99%

Methods for Human-Centered eHealth Development: Narrative Scoping Review

Kip¹,

Keizer²,

Silva³

et al. 2022

J Med Internet Res

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Background Thorough holistic development of eHealth can contribute to a good fit among the technology, its users, and the context. However, despite the availability of frameworks, not much is known about specific research activities for different aims, phases, and settings. This results in researchers having to reinvent the wheel. Consequently, there is a need to synthesize existing knowledge on research activities for participatory eHealth development processes. Objective The 3 main goals of this review are to create an overview of the development strategies used in studies based on the CeHRes (Center for eHealth Research) Roadmap, create an overview of the goals for which these methods can be used, and provide insight into the lessons learned about these methods. Methods We included eHealth development studies that were based on the phases and/or principles of the CeHRes Roadmap. This framework was selected because of its focus on participatory, iterative eHealth design in context and to limit the scope of this review. Data were extracted about the type of strategy used, rationale for using the strategy, research questions, and reported information on lessons learned. The most frequently mentioned lessons learned were summarized using a narrative, inductive approach. Results In the included 160 papers, a distinction was made between overarching development methods (n=10) and products (n=7). Methods are used to gather new data, whereas products can be used to synthesize previously collected data and support the collection of new data. The identified methods were focus groups, interviews, questionnaires, usability tests, literature studies, desk research, log data analyses, card sorting, Delphi studies, and experience sampling. The identified products were prototypes, requirements, stakeholder maps, values, behavior change strategies, personas, and business models. Examples of how these methods and products were applied in the development process and information about lessons learned were provided. Conclusions This study shows that there is a plethora of methods and products that can be used at different points in the development process and in different settings. To do justice to the complexity of eHealth development, it seems that multiple strategies should be combined. In addition, we found no evidence for an optimal single step-by-step approach to develop eHealth. Rather, researchers need to select the most suitable research methods for their research objectives, the context in which data are collected, and the characteristics of the participants. This study serves as a first step toward creating a toolkit to support researchers in applying the CeHRes Roadmap to practice. In this way, they can shape the most suitable and efficient eHealth development process.

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Section: Resultsmentioning

confidence: 99%

Methods for Human-Centered eHealth Development: Narrative Scoping Review

Kip¹,

Keizer²,

Silva³

et al. 2022

J Med Internet Res

View full text Add to dashboard Cite

show abstract

“…How often these people will be seen in regular clinical practice is an area that needs thought and planning, and we should be careful that the emerging era of non-replacement therapies does not underestimate the role of adjunct non-pharmacological care. Whilst there may be a case for blended care, and supporting PWH to perform tailored physical activities and exercises at home [48], physiotherapy adds value to the potential overall success of advanced therapies [12]. Some competencies will evolve, and the core role of the physiotherapist in performing a correct joint assessment and detecting changes early may require more sensitive tools [11].…”

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confidence: 99%

The Role of Physiotherapy in the New Treatment Landscape for Haemophilia

Lobet

Timmer

Königs

et al. 2021

JCM

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The physiotherapist plays an essential role for people with haemophilia, an inherited bleeding disease responsible for musculoskeletal complications. Yet, with the advent of new and advanced therapies, the medical landscape is changing, and physiotherapy must adapt alongside. This paper considers whether there will still be a need for physiotherapy in the era of advanced therapies, and discusses ways in which services should evolve to complement emerging treatment paradigms for haemostasis in people with haemophilia. Ultimately, physiotherapy will remain an important element of care, even for people with little joint damage and low risks in the era of the new mild phenotype. However, competencies will need to evolve, and physiotherapists in both primary care and specialist treatment centres should work with haematology colleagues to develop more sensitive tools for detecting early joint changes. Physiotherapists will also play a crucial role in counselling and physically coaching, monitoring the musculoskeletal status of people with haemophilia who have transitioned to new treatments.

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“…Currently, home-based physiotherapy programs are being evaluated in people with hemophilia as an inexpensive accessible intervention with the potential to improve joint health. 94,95 Individualized home-based exercise programs, with access to online/virtual tools and support from physiotherapists, have been positively received with encouraging results. [94][95][96] Future randomized controlled clinical trials will be able to provide evidence of the clinical efficacy of such programs.…”

Section: Dovepressmentioning

confidence: 99%

Asymptomatic Joint Bleeding and Joint Health in Hemophilia: A Review of Variables, Methods, and Biomarkers

Gooding¹,

Thachil²,

Alamelu³

et al. 2021

JBM

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Joint health is a key contributor to quality of life in patients with hemophilia. However, variables that impact long-term joint outcomes have not been comprehensively defined. A systematic literature search identified publications relating to joint health in patients with hemophilia. Studies clearly show that early, sustained prophylaxis with factor replacements improves long-term joint outcomes. However, a subset of patients appear to develop arthropathy despite maintaining excellent bleeding outcomes, which suggests possible recurrent asymptomatic bleeding into the joints in these patients. Furthermore, limited data are available on how long-acting factor VIII and factor IX replacement therapies could impact long-term joint outcomes. Many variables were identified as potential indicators that a patient may develop hemophilic arthropathy, including genetic mutations, endogenous factor VIII and IX levels, bone health, and physical activity levels. Tools for the diagnosis and monitoring of hemophilic arthropathy are critical to detect early joint damage, so that management can be adjusted accordingly. Imaging techniques, particularly magnetic resonance imaging, can detect synovial changes, a strong predictor for the future development of hemophilic arthropathy. In addition, several biomarkers associated with cartilage and bone formation, vascularization, and angiogenesis could potentially identify the onset and progression of early joint damage. Since the development of hemophilic arthropathy is complex, a comprehensive therapeutic approach is necessary for the effective prevention of arthropathy in patients with hemophilia.

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A Blended Physiotherapy Intervention for Persons With Hemophilic Arthropathy: Development Study

Cited by 11 publications

References 27 publications

Methods for Human-Centered eHealth Development: Narrative Scoping Review

Methods for Human-Centered eHealth Development: Narrative Scoping Review

The Role of Physiotherapy in the New Treatment Landscape for Haemophilia

Asymptomatic Joint Bleeding and Joint Health in Hemophilia: A Review of Variables, Methods, and Biomarkers

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