Exploring patient education unmet needs for rare and complex connective tissue and musculoskeletal diseases: A survey of health care providers’ and patients’ expectations in Europe

Farhat, Meryem-Maud; Cornet, Alain; Frank, Charissa Hermine; Galetti, Ilaria; Grunert, Juergen; Guimarães, Vera; Vieira, Ana; Hachulla, É.

doi:10.1177/1742395320968618

Cited by 6 publications

(9 citation statements)

References 17 publications

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“…[9][10][11] Several studies demonstrate that patients with rare connective tissue diseases and their providers are interested in web-based education and support. [12][13][14] However, few online programmes focus on critical concepts of health equity, patient engagement and empowerment. The Lupus Interactive Navigator is a webbased self-management programme for SLE with high patient ratings of content, usability and acceptability.…”

Section: Key Messagesmentioning

confidence: 99%

Patient and healthcare professional eHealth literacy and needs for systemic sclerosis support: a mixed methods study

et al. 2021

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ObjectivesWe engaged patients with systemic sclerosis (SSc) and healthcare professionals to assess electronic health (eHealth) literacy and needs relating to web-based support using internet-based information and communication technologies (ICT).MethodsWe employed an explanatory sequential mixed methods design. First, we conducted a cross-sectional survey in patients (n=101) and professionals (n=47). Next, we conducted three focus groups with patients, family members and professionals (n=17).ResultsOf patients, 89.1% used ICT at least weekly for private communication. Patients reported relatively high comprehension of eHealth information (x¯ =6.7, 95% CI: 6.2 to 7.3, range 1–10), yet were less confident evaluating information reliability (x¯ =5.8, 95% CI: 5.1 to 6.4) and finding eHealth apps (x¯ =4.8, 95% CI: 4.2 to 5.4). Patients and professionals reported little experience with web-based self-management support. Focus groups revealed ‘considering non-ICT-accessible groups’ and ‘fitting patients’ and professionals’ technology’ as crucial for acceptability. In relation to understanding/appraising eHealth, participants highlighted that general SSc information is not tailored to individual’s disease course. Recommendations included ‘providing timely, understandable and safe information’ and ‘empowering end-users in ICT and health decision-making skills’. Professionals expressed concerns about lacking resources. Patients were concerned about data security and person-centredness. Key eHealth drivers included ‘addressing end-user perceptions’ and ‘putting people at the centre of technology’.ConclusionsPatients and professionals need education/training to support uptake of eHealth resources. Key elements include guiding patients to timely/reliable information and using eHealth to optimise patient–provider communication. Design that is responsive to end-users’ needs and considers individuals with limited eHealth literacy and/or ICT access appears to be critical for acceptability.

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Section: Key Messagesmentioning

confidence: 99%

Patient and healthcare professional eHealth literacy and needs for systemic sclerosis support: a mixed methods study

et al. 2021

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“…Importantly, PLWRD and their advocacy organizations should be included at all stages of the pyramid: they need knowledge and skills for the empowerment, active and meaningful participation in self-care, and advocacy and leadership skills to engage and partner with HWF, researchers, policy makers and regulatory agencies. As PLWRD are experts of their own disease, they could be consulted and engaged into the creation and alignment of educational contents to unmet needs, provision of medical and peer-to-peer education [58][59][60].…”

Section: State-of-the-art In Rare Disease Education: Available Resour...mentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

“…PLWRD and caregivers have high needs for information and skills in self-management, coping, communication and advocacy [ 60 ]. Hence, there is a need to develop patient empowerment and educational programmes that may be provided by specialist nurses, allied health or other highly-specialized professionals [ 60 , 67 ]. Collaboration with patient organizations may also play a highly important role in the fulfillment of patients ‘informational and educational needs and the establishment of partnerships among patients and professionals, while one of the most effective ways to ensure partnerships may be through the integrated learning of mixed audiences (patient representatives and professionals together).…”

Section: Introductionmentioning

confidence: 99%

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Rare disease education in Europe and beyond: time to act

Tumienė

Peters

Melegh

et al. 2022

Orphanet J Rare Dis

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People living with rare diseases (PLWRD) still face huge unmet needs, in part due to the fact that care systems are not sufficiently aligned with their needs and healthcare workforce (HWF) along their care pathways lacks competencies to efficiently tackle rare disease-specific challenges. Level of rare disease knowledge and awareness among the current and future HWF is insufficient. In recent years, many educational resources on rare diseases have been developed, however, awareness of these resources is still limited and rare disease education is still not sufficiently taken into account by some crucial stakeholders as academia and professional organizations. Therefore, there is a need to fundamentally rethink rare disease education and HWF development across the whole spectrum from students to generalists, specialists and experts, to engage and empower PLWRD, their families and advocates, and to work towards a common coherent and complementary strategy on rare disease education and training in Europe and beyond. Special consideration should be also given to the role of nurse coordinators in care coordination, interprofessional training for integrated multidisciplinary care, patient and family-centered education, opportunities given by digital learning and fostering of social accountability to enforce the focus on socially-vulnerable groups such as PLWRD. The strategy has to be developed and implemented by multiple rare disease education and training providers: universities, medical and nursing schools and their associations, professional organizations, European Reference Networks, patient organizations, other organizations and institutions dedicated to rare diseases and rare cancers, authorities and policy bodies.

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“…Besides the many initiatives that are already ongoing at European and National level ( 53 ), the high need of patient education for rare diseases is continuously highlighted in many different contexts. With regards to BS, the initiatives currently in place to support patient education are very limited.…”

Section: Domains To Address Patients' Empowerment In Bsmentioning

confidence: 99%

Empowering Patients in the Therapeutic Decision-Making Process: A Glance Into Behçet's Syndrome

Marinello

Cianni

Bianco³

et al. 2021

Front. Med.

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Behçet's syndrome (BS) represents a challenging condition, characterized by a variable spectrum of disease profile and associated with a significant limitation of the daily activities as well as a potential negative impact on relationships and psychological status. Considering also the complexity of the therapeutic management of BS, that often includes biological off-label treatments, the participation in the therapeutic decision-making process of the BS patients is essential to ensure the integration of the care process into the life of the patient. For this reason, the empowerment of BS patients represents a crucial need and the present work is aimed at fully exploring all the potential variables implicated in the BS patient empowerment, also highlighting major points to consider and concrete actions to be planned in the immediate future in order to implement a pragmatic facilitation of the patients' empowerment.

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Exploring patient education unmet needs for rare and complex connective tissue and musculoskeletal diseases: A survey of health care providers’ and patients’ expectations in Europe

Cited by 6 publications

References 17 publications

Patient and healthcare professional eHealth literacy and needs for systemic sclerosis support: a mixed methods study

Patient and healthcare professional eHealth literacy and needs for systemic sclerosis support: a mixed methods study

Rare disease education in Europe and beyond: time to act

Empowering Patients in the Therapeutic Decision-Making Process: A Glance Into Behçet's Syndrome

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