Burden of treatment in the light of the international classification of functioning, disability and health: a “best fit” framework synthesis

Gonçalves, Ana-Carolina; Jácome, Cristina; Demain, Sara; Hunt, Katherine; Marques, Alda

doi:10.1080/09638288.2016.1194898

Cited by 8 publications

(6 citation statements)

References 33 publications

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“…Such devices can only be tested in the home rather than a laboratory environment. This approach should minimise the ‘burden of treatment’ [32] which is a frequent reason for abandonment of much wider used technology such as splints, walkers or scooters [33] .…”

Section: Introductionmentioning

confidence: 99%

Home used, patient self-managed, brain-computer interface for the management of central neuropathic pain post spinal cord injury: usability study

Al-Taleb

Purcell

Fraser

et al. 2019

J NeuroEngineering Rehabil

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BackgroundCentral Neuropathic Pain (CNP) is a frequent chronic condition in people with spinal cord injury (SCI). Previously, we showed that using laboratory brain-computer interface (BCI) technology for neurofeedback (NFB) training, it was possible to reduce CNP in people with SCI. In this study, we show results of patient self-managed treatment in their homes with a BCI-NFB using a consumer EEG device.MethodsUsers: People with chronic SCI (17 M, 3 F, 50.6 ± 14.1 years old), and CNP ≥4 on a Visual Numerical Scale. Location: Laboratory training (up to 4 sessions) followed by home self-managed NFB. User Activity: Upregulating the EEG alpha band power by 10% above a threshold and at the same time downregulating the theta and upper beta (20-30 Hz) band power by 10% at electrode location C4. Technology: A consumer grade multichannel EEG headset (Epoch, Emotiv, USA), a tablet computer and custom made NFB software. Evaluation: EEG analysis, before and after NFB assessment, interviews and questionnaires.ResultsEffectiveness: Out of 20 initially assessed participants, 15 took part in the study. Participants used the system for 6.9 ± 5.5 (median 4) weeks. Twelve participants regulated their brainwaves in a frequency specific manner and were most successful upregulating the alpha band power. However they typically upregulated power around their individual alpha peak (7.6 ± 0.8 Hz) that was lower than in people without CNP. The reduction in pain experienced was statistically significant in 12 and clinically significant (greater than 30%) in 8 participants. Efficiency: The donning was between 5 and 15 min, and approximately 10–20% of EEG data recorded in the home environment was noise. Participants were mildly stressed when self-administering NFB at home (2.4 on a scale 1–10). User satisfaction: Nine participants who completed the final assessment reported a high level of satisfaction (QUESQ, 4.5 ± 0.8), naming effectiveness, ease of use and comfort as main priorities. The main factors influencing frequency of NFB training were: health related issues, free time and pain intensity.ConclusionPortable NFB is a feasible solution for home-based self-managed treatment of CNP. Compared to pharmacological treatments, NFB has less side effects and provides users with active control over pain.Trial registrationGN15NE124, Registered 9th June 2016.

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Section: Introductionmentioning

confidence: 99%

Home used, patient self-managed, brain-computer interface for the management of central neuropathic pain post spinal cord injury: usability study

Al-Taleb

Purcell

Fraser

et al. 2019

J NeuroEngineering Rehabil

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“…Because they know they should do differently, they may actively hide their non-adherence to caregivers. [46][47][48] Therefore, assessing the burden of treatment is crucial to both evaluate and improve adherence of patients. Future studies could explore how our patient reported instrument could be generalised to other chronic inflammatory skin diseases.…”

Section: Discussionmentioning

confidence: 99%

Vitiligo Treatment Impact score (VITs): development and validation of a vitiligo burden of treatment questionnaire using the ComPaRe Vitiligo e‐cohort

Shourick

Sénéschal

Andreu

et al. 2021

Acad Dermatol Venereol

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Background Vitiligo management is challenging and requires long-term adherence of patients who often complain of the burden associated with treatment.Objective To develop and validate a patient reported measurement of the burden of treatment in vitiligo. MethodsThe study was nested within the ComPaRe Vitiligo e-cohort, an online e-cohort of vitiligo patients in France.Items were derived from a literature review and from the qualitative analysis of a survey using open-ended questions of 204 patients with Vitiligo. Construct validity of the resulting instrument was assessed by comparing the instrument's score to the Dermatology Life Quality Index (DLQI), Vitiligo Impact Patient score (VIPs) and Treatment Burden Questionnaire (TBQ) scores. Reliability was assessed by test-retest with 15 AE 10 days of interval between both assessments. ResultsIn total, 343 adult participants participated in the validation of the Vitiligo Treatment Impact score (VITs). The VITs is a 19-item questionnaire assessing the burden of treatment in patients with vitiligo with results suggesting four domains ('Finding a doctor', 'Phototherapy', 'Topical treatment' and 'Impact on outdoor activities and photoprotection').The VITs total score was well correlated with the DLQI, VIP and TBQ scores. Agreement between test and retest was good (ICC 0.705, 95% CI 0.491-0.818). ConclusionsWe developed a patient reported measurement of the burden of treatment in vitiligo with good psychometric properties.

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“…The ICF has been recognized internationally as a useful tool and it is becoming a global trend [36]. The previously reported experiences demonstrate that it is used by health professionals to improve communication [37] and to enable the creation of more effective therapeutic goals [38].This tool can be a roadmap to define specific objectives as well as appropriate interventions. Incorporating the ICF in different levels of health care will contribute to the diffusion of the biopsychosocial model [39].…”

Section: Final Notesmentioning

confidence: 99%

Biopsychosocial model in health care: reflections in the production of functioning and disability data

et al. 2020

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Introduction: In the last decade, the inclusion of a functioning indicator in health care has been discussed on the international agenda. The strategies related to the implementation of these indicators are issues that involve health education, governance, and medical records. Objective: study aims to discuss the International Classification of Functioning, Disability and Health (ICF) potential as a useful tool to produce information on health care services. Method: As theoretical assumptions, the universal model of the ICF based on the biopsychosocial model was used. Results: When used as a health indicator, functioning data can measure the real effect of some health conditions in different life domains. Based on the reflections carried out and theoretical foundations accessed, the study shows that the implementation of functioning indicators in periodical population health surveys and protocols of clinical documentation regardless the level of health service would be relevant for Patient Care Planning. Note that the group of functioning indicators should be proposed in a universal language and, therefore, ICF represents the most comprehensive model. Conclusion: Information regarding health status can be useful to enable health care management. Furthermore, ICF are essential to improve the documentation service of the health system and also can be used in planning and monitoring health care. It can also be used to collect disability data in surveys ensuring comparison among different surveys.

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Burden of treatment in the light of the international classification of functioning, disability and health: a “best fit” framework synthesis

Cited by 8 publications

References 33 publications

Home used, patient self-managed, brain-computer interface for the management of central neuropathic pain post spinal cord injury: usability study

Home used, patient self-managed, brain-computer interface for the management of central neuropathic pain post spinal cord injury: usability study

Vitiligo Treatment Impact score (VITs): development and validation of a vitiligo burden of treatment questionnaire using the ComPaRe Vitiligo e‐cohort

Biopsychosocial model in health care: reflections in the production of functioning and disability data

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