Content validity of the Comprehensive ICF Core Set for multiple sclerosis from the perspective of speech and language therapists

Renom, Marta; Conrad, Andrea; Ambrós, H. Bascuñana; Cieza, Alarcos; Galán, Ingrid; Kesselring, Jürg; Coenen, Michaela

doi:10.1111/1460-6984.12086

Cited by 26 publications

(7 citation statements)

References 30 publications

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“…Only a few medical conditions have been studied from this point of view so far. The ICF-based profiles have been used among people with migraine [18], multiple sclerosis [19,20], visual impairment [21], children with microcephaly associated with congenital Zikavirus infection [22] and cerebral palsy [23]. Such profiles have not previously been created among people with neck pain.…”

Section: Discussionmentioning

confidence: 99%

Change in functioning profile after cervical surgery

Widbom-Kolhanen

Pernaa²,

Saltychev

2022

International Journal of Rehabilitation Research

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The objectives are to (a) introduce an approach to use the Neck Disability Index (NDI) in a way, which is different and more International Classification of Functioning, Disability and Health-oriented than acommon practice -focusing on functional profile instead of composite score only, and (b) to describe the changes in functioning experienced by patients undergoing cervical surgery. This was a registerbased study of almost 400 patients undergoing different cervical surgical procedures in a university hospital between 2018 and 2021. The patients responded to repeated surveys preoperatively and 3, 12 and 24 months postoperatively. Linear regression test was performed to analyze the change of the NDI score. The changes in scores during a follow-up were statistically significant (P < 0.001) for all the NDI items as well as for the total score. Each item demonstrated significant improvement postoperatively and a slight worsening between 1 and 2 years after the surgery. The observed slight decline in functioning at the end of follow-up remained below the baseline level for all the items. While the change in the composite score of the NDI was able to describe the overall change in functioning after the surgery, different areas of functioning were affected by the surgery differently. The results suggest that the use of functional profiles, in addition to composite scores, is justified among patients with cervical pathologies.

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Section: Discussionmentioning

confidence: 99%

Change in functioning profile after cervical surgery

Widbom-Kolhanen

Pernaa²,

Saltychev

2022

International Journal of Rehabilitation Research

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“…Our results should inform the development of innovative value-based contracts for MS medications that incorporate important patient outcomes relevant to multiple stakeholders. and body structures (i.e., muscle tone, involuntary movement reaction, and gait pattern functions) and activities and participation (i.e., changing basic body position, transferring oneself, and lifting and carrying objects) outcomes as important intervention categories in the Core Set for MS. [28][29][30][31][32][33] Importantly, in contrast with our approach, none of these Delphi studies captured patient, payer, or pharmacy viewpoints.…”

Section: ■■ Discussionmentioning

confidence: 99%

Determination of Multiple Sclerosis Indicators for Value-Based Contracting Using the Delphi Method

Swart

Neilson

Good

et al. 2019

JMCP

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BACKGROUND: Value-based contracts link medication payments to performance measures with the ultimate goal of lowering costs while improving patient outcomes. Previous multiple sclerosis (MS) value-based contracts have focused on indicators easily collected from claims or electronic health record data as their value-based outcomes, even though numerous other MS clinical indicators of interest exist. Uncertainty remains regarding which MS indicators are most meaningful to all stakeholders affected by a value-based contract. OBJECTIVE: To identify meaningful MS indicators among key stakeholders for the purpose of informing a value-based contract for MS medications.METHODS: Using a modified Delphi method, we surveyed 26 diverse stakeholders, including 8 patients and caregivers; 9 providers (neurologists, nurses, physician assistants, and specialty pharmacists); 2 pharmaceutical company representatives; 5 payers; and 2 pharmacy benefits managers. A list of 12 MS indicators was created from subject matter expert consultation and a literature review. All stakeholders reported on the meaningfulness and value of these 12 indicators through a 5-point Likert scale and forced selection of the 3 most meaningful indicators. All nonpatient stakeholders were additionally surveyed on collection feasibility of the same 12 indicators using a 5-point Likert scale. We defined consensus as ≥ 75% agreement on the meaningfulness and feasibility of an indicator (Likert scores 4 or 5). We performed a Fisher's exact test to assess differences between nonpatient and patient stakeholder rankings of indicators. RESULTS: Consensus was reached for at least 1 indicator for all questions after 2 rounds. "Worsening physical disability" and "functional impairment" achieved 92% agreement on a Likert-scale question assessing indicator value, and 100% of participants selected "worsening physical disability" when asked to choose the 3 most meaningful indicators. "MS flares requiring an emergency department visit" and "MS flares requiring inpatient admission" were rated as the 2 most feasibly collected indicators (both received 89% agreement).CONCLUSIONS: Using the Delphi method, we identified that disability and functional impairment are meaningful MS indicators to diverse stakeholders. These findings support the incorporation of important patient-reported outcomes into value-based contracts for MS medications.

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“…More recently, cooled wearable pads and garments have been successfully used as a method of combating increased heating in MS patients during exercise and maintaining motor function. 46 Renom et al, 2014, 48 Pepping et al, 2013, 47 Langdon, 2011, 45 DasGupta et al, 2003, 43 Buzaid et al, 2013, 42 Khan et al, 2015, 44 Svestkova et al, 2010, 49 National Clinical Guideline Centre, 2014. 41 …”

Section: Body Temperaturementioning

confidence: 99%

Neurorehabilitation in Multiple Sclerosis – Resilience in Practice

Kesselring¹

2017

European Neurological Review

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In recent years, enormous strides have been made in increasing the range and efficacy of disease-modifying drugs available for the treatment of multiple sclerosis (MS) in its early and remitting stages, and more continue to emerge. Another equally important concept of successful treatment of MS is neurorehabilitation, which must be pursued alongside these medications. Key factors that contribute to the impact of neurorehabilitation include resilience and neuroplasticity. In the former, components such as nutrition, self-belief and physical activity provide a stronger response to the disease and improved responses to treatment. Neuroplasticity is the capacity of the brain to establish new neuronal networks after lesion damage has occurred and distant brain regions assume control of lost functions. In MS, it is vital that each patient is treated by a coordinated multidisciplinary team. This enables all aspects of the disease including problems with mobility, gait, bladder/bowel disturbances, fatigue and depression to be effectively treated. It is also important that the treating team adopts current best practice and provides internationally agreed standards of care. A further vital aspect of MS management is patient engagement, in which individuals are fully involved and are encouraged to strive and put effort into meeting treatment goals. In this approach, healthcare providers become motivators and patients need less intervention and consume fewer resources. Numerous interventions that promote neurorehabilitation are available, though evidence to support their use is limited by a lack of data from large randomised controlled trials. Combining interventions that promote neurorehabilitation with newer, more effective treatments creates a promising potential to substantially improve the outlook for patients at all stages of MS.

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Content validity of the Comprehensive ICF Core Set for multiple sclerosis from the perspective of speech and language therapists

Cited by 26 publications

References 30 publications

Change in functioning profile after cervical surgery

Change in functioning profile after cervical surgery

Determination of Multiple Sclerosis Indicators for Value-Based Contracting Using the Delphi Method

Neurorehabilitation in Multiple Sclerosis – Resilience in Practice

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