Effectiveness of the Medtep Hemophilia online platform for adherence to prophylactic treatment in haemophilia patients: Results from a 1‐year observational study

Cuesta‐Barriuso, Rubén; López‐Pina, José Antonio; Nieto-Munuera, Joaquín; Sagarra-Valls, G; Panisello-Royo, J M; Torres-Ortuño, Ana

doi:10.1111/hae.13444

Cited by 13 publications

(23 citation statements)

References 37 publications

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“…This resulted in increased patient quality of life (QoL) and enhanced illness perception and stabilization of joint health after 1 year. 19 In concordance with previous studies, PWH in our sample also reported that iCHIP Both people with severe and with non-severe haemophilia in our sample found it useful to use visuals in their interaction with the Team. Indeed, a good relationship between care providers and PWH has been found to be associated with treatment adherence in haemophilia.…”

Section: Discussionsupporting

confidence: 92%

“…9 Our results, based on the perspectives of patients, suggest that visualization techniques could be a helpful patient-centred care strategy. 17,18 In another study, 19 Several decision aids have been developed for haemophilia. A previous qualitative study demonstrated that a better understanding determines the ability to practice prophylaxis.…”

Section: Discussionmentioning

confidence: 99%

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Patient‐centred care in haemophilia: Patient perspectives on visualization and participation in decision‐making

et al. 2019

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Introduction and Aim The British Columbia Adult Haemophilia Team recently adopted a patient‐centred care approach. The team presented visual information on an individual's pharmacokinetic profile and bleed history and encouraged patients to participate in treatment decisions. This qualitative study explored how this approach changed patients’ understanding of haemophilia and how it facilitated them to make treatment decisions. Methods We interviewed 18 males with mild, moderate or severe haemophilia, using a convenience sample from the adult haemophilia clinic at St. Paul's hospital in Vancouver, Canada. Interviews were recorded and transcribed verbatim and analyzed using descriptive content analysis. Results Most participants reported that reviewing visual information with the Clinic Team helped them in their communication with their care providers during their annual review clinic appointment. Despite this improved communication, for some the most important feature of their treatment was that they had switched from on‐demand treatment to prophylactic treatment in recent years and were able to prevent bleeds. Almost half of the participants reported that the visual information presented increased their understanding of haemophilia and the pharmacokinetics of coagulation factor. Three patients improved their treatment adherence or had changed their prophylaxis schedules based on this. Most participants felt that they were involved in decision‐making about their treatment schedule, which they appreciated. On the other hand, two participants thought the Clinic Team should make these decisions. Conclusion Participants perceived the patient‐centred prophylaxis approach helpful because it enhanced communication with the Clinic Team, increased their understanding of haemophilia and pharmacokinetics of coagulation factor and facilitated treatment decisions.

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Section: Discussionsupporting

confidence: 92%

Section: Discussionmentioning

confidence: 99%

Patient‐centred care in haemophilia: Patient perspectives on visualization and participation in decision‐making

et al. 2019

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“…Some experiences of the implementation of electronic devices replacing the paper registries have been presented in international congresses . In a recent study, the use of an app improved the adherence measured with the VERITAS‐Pro scale, quality of life and illness perception after 1 year . Several experiences of telehealth in haemophilia have been reported, including an interesting experience of telemedicine by videoconference in paediatric patients .…”

Section: Discussionmentioning

confidence: 99%

“…[18][19][20][21] In a recent study, the use of an app improved the adherence measured with the VERITAS-Pro scale, quality of life and illness perception after 1 year. 22 Several experiences of telehealth in haemophilia have been reported, 23 including an interesting experience of telemedicine by videoconference in paediatric patients. 24 The results of our survey highlight the preference for apps, and we are implementing the employment of a specific app for recording infusions and bleed-related occurrences.…”

Section: Pro Scale (Validated Haemophilia Regimen Treatment Adherencementioning

confidence: 99%

Pilot evaluation of home delivery programme in haemophilia

et al. 2018

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“…Formal evaluation of the Be Involved services, specifically the home care infusion component is integral to making effectual program adjustments. Currently, most haemophilia care research focusses on self‐management, transitional care programs and adherence outcomes, particularly in adolescents . For example, one study addressing home care infusion services as part of the collective ‘Haemophilia Community’ looked at men's perceptions of management through a resilience framework .…”

Section: Introductionmentioning

confidence: 99%

Haemophilia home care: A qualitative evaluation study of the Be Involved infusion program

et al. 2019

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Introduction In Canada, patients with haemophilia can receive health care through a limited number of specialized haemophilia treatment centres. Treatment of this X‐linked bleeding disorder through self‐infusion of factor replacement is common; however, some individuals with haemophilia require additional infusion support from medical professionals. While provincially funded outreach clinics and telehealth are available, pharmaceutical companies that supply factor have developed novel home infusion programs wherein registered nurses assist/manage factor administration in the patients’ homes. Aim The current qualitative evaluation explored the real‐world effectiveness and impact of the Be Involved (Pfizer Canada) home infusion service, from provider, program end‐user and needs analysis perspectives. Methods Qualitative interviews with patients and caregivers who had used Be Involved (n = 7) and Be Involved Staff (n = 8) provided important insights and recommendations for program improvement initiatives. Also included were needs assessments of potential end‐users (n = 11) as a means to making program adjustments. Results The inductively derived findings revealed Be Involved as a highly valued, though key specialized service providing significant assistance to a small number of haemophilia patients. Augmenting traditional services, the program was endorsed as easing the burden of haemophilia care, while the Be Involved nurses were affirmed as highly effective and critical to the program's success. A lack of program promotion and awareness was evident – limiting uptake, amid communication and systems delivery challenges. Conclusions The current evaluation findings inform our recommendations for, and brief discussion of, the need for stronger promotional strategies and improved communication lines to increase the reach and efficiencies of the Be Involved program.

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Effectiveness of the Medtep Hemophilia online platform for adherence to prophylactic treatment in haemophilia patients: Results from a 1‐year observational study

Abstract: The Medtep Hemophilia online platform helped the studied patients with haemophilia to improve their adherence to prophylactic treatment, while increasing their QoL and illness perception, as well as joint arthropathies stabilization.

Cited by 13 publications

References 37 publications

Patient‐centred care in haemophilia: Patient perspectives on visualization and participation in decision‐making

Patient‐centred care in haemophilia: Patient perspectives on visualization and participation in decision‐making

Pilot evaluation of home delivery programme in haemophilia

Haemophilia home care: A qualitative evaluation study of the Be Involved infusion program

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