Background Migraine-attributed burden, impact, disability and migraine-impacted quality of life are important concepts in clinical management, clinical and epidemiological research, and health... Show moreBackground Migraine-attributed burden, impact, disability and migraine-impacted quality of life are important concepts in clinical management, clinical and epidemiological research, and health policy, requiring clear and agreed definitions. We aimed to formulate concise and precise definitions of these concepts by expert consensus. Methods We searched the terms migraine-attributed burden, impact, disability and migraine-impacted quality of life in Embase and Medline from 1974 and 1946 respectively. We followed a Delphi process to reach consensus on definitions. Results We found widespread conflation of concepts and inconsistent terminology within publications. Following three Delphi rounds, we defined migraine-attributed burden as "the summation of all negative consequences of the disease or its diagnosis"; migraine-attributed impact as "the effect of the disease, or its diagnosis, on a specified aspect of life, health or wellbeing"; migraine-attributed disability as "physical, cognitive and mental incapacities imposed by the disease"; and migraine-impacted quality of life as "the subjective assessment by a person with the disease of their general wellbeing, position and prospects in life". We complemented each definition with a detailed description. Conclusion These definitions and descriptions should foster consistency and encourage more appropriate use of currently available quantifying instruments and aid the future development of others. Show less
Background Daily functioning is known to decline after a hip fracture, but studies of self-reported functioning before the fracture suggest this decline begins before the fracture. Objective... Show moreBackground Daily functioning is known to decline after a hip fracture, but studies of self-reported functioning before the fracture suggest this decline begins before the fracture. Objective Determine whether change in functioning in the year before a hip fracture in very old (80+) differs from change in those without a hip fracture. Design Two-stage individual patient data meta-analysis including data from the Towards Understanding Longitudinal International older People Studies (TULIPS)-consortium. Setting Four population-based longitudinal cohorts from the Netherlands, New Zealand and the UK. Subjects Participants aged 80+ years. Methods Participants were followed for 5 years, during which (instrumental) activities of daily living [(I)ADL] scores and incident hip fractures were registered at regular intervals. Z-scores of the last (I)ADL score and the change in (I)ADL in the year before a hip fracture were compared to the scores of controls, adjusted for age and sex. Results Of the 2,357 participants at baseline, the 161 who sustained a hip fracture during follow-up had a worse (I)ADL score before the fracture (0.40 standard deviations, 95% CI 0.19 to 0.61, P = 0.0002) and a larger decline in (I)ADL in the year before fracture (-0.11 standard deviations, 95% CI -0.22 to 0.004, P = 0.06) compared to those who did not sustain a hip fracture. Conclusions In the very old a decline in daily functioning already starts before a hip fracture. Therefore, a hip fracture is a sign of ongoing decline and what full recovery is should be seen in light of the pre-fracture decline. Show less
Objective We propose a new outcome measure to assess the efficacy of migraine treatments translating the approach of the Global Burden of Disease studies from a societal to an individual level:... Show moreObjective We propose a new outcome measure to assess the efficacy of migraine treatments translating the approach of the Global Burden of Disease studies from a societal to an individual level: Instead of calculating "years lived with disability", we suggest estimating "time lost due to an attack".MethodsTime lost due to an attack is calculated by multiplying the duration and the degree of impaired functioning during an attack.ResultsTime lost due to an attack, different from other outcome measures, does not just focus on the short-term analgesic effects of treatments, but rather on the improvement of all migraine symptoms and restoration of functioning, also considering therapy-related impairment. Importantly, time lost due to an attack measures the entire time patients are not functioning normally, from onset to complete resolution.ConclusionsTime lost due to an attack represents a new paradigm to assess migraine burden in single patients for a patient-centered evaluation of both acute and prophylactic treatments. Show less
Objective:To develop and validate an outcome scale for the cervical radicular syndrome and to build a mapping, predicting EQ-5D utility from the new scale. Study design and setting:An item pool was... Show moreObjective:To develop and validate an outcome scale for the cervical radicular syndrome and to build a mapping, predicting EQ-5D utility from the new scale. Study design and setting:An item pool was developed based on literature and patient and clinician interviews. Item selection was based on symptomatology, factor analysis, and internal consistency. We assessed: (a) test-retest reliability by standard error of measurement and intraclass correlation coefficients; (b) construct validity by testing 22 hypotheses on relationships with existing measures and known-group differences. For the mapping, performance was assessed by mean absolute error and root mean squared error. Results:A total of 254 patients with cervical radicular syndrome completed the first questionnaire, 61 stable patients a retest. Item selection led to a 21-item questionnaire consisting of three subscales: Symptoms, Energy and postures, and Actions and activities. Standard error of measurement values ranged from 6.7 to 11.2 on a 0 to 100 scale. All subscales showed good reliability (intraclass correlation coefficients: 0.84, 0.87, and 0.94). All hypotheses for construct validity were confirmed. A linear utility mapping was preferred, with reasonable statistical performance. Conclusion:We developed a reliable and valid cervical radicular syndrome specific outcome scale, called the Cervical Radiculopathy Impact Scale (CRIS). This new questionnaire may facilitate (cost-)effectiveness studies in this field. Show less
The Paralympic Games are founded on ideals of inclusivity and diversity for people with a disability. Consequently, there is an emphasis on athlete empowerment within the Paralympic Movement. One... Show moreThe Paralympic Games are founded on ideals of inclusivity and diversity for people with a disability. Consequently, there is an emphasis on athlete empowerment within the Paralympic Movement. One consistent criticism of the idea of athlete empowerment is that it relies on the concept of the ‘supercrip’, narratives of overcoming the tragedy of one’s disability through superhero-like qualities. The role of society is largely left out. This article shows that such narratives are prevalent in discourses surrounding the upcoming Tokyo 2020 Games, specifically in popular culture products designed to promote the Paralympic Games. This is problematic because such narratives individualize disability, rather than address larger social issues that people with a disability face in Japan. Show less
With increasing life expectancy, the incidence and burden of osteoarthritis on society increases. Currently, no treatment for end-stage symptomatic osteoarthritis is available and when symptoms... Show moreWith increasing life expectancy, the incidence and burden of osteoarthritis on society increases. Currently, no treatment for end-stage symptomatic osteoarthritis is available and when symptoms become too severe arthroplasty surgery will be performed, replacing the affected joint with a prosthesis. Although replacement surgery of the hip or knee is safe and commonly performed, up to 20% of the patients are unsatisfied with the outcome. The exact reasons for this dissatisfaction are unknown but may vary from the type of surgical procedure itself, expectancy of the outcome surgery to the patient’s preoperative state of overall metabolic health. We aimed to evaluate some of these aspects related to outcome, from patient perspectives to molecular profiling (e.g. metabolic health). Characteristics of different nature were included: material of prosthesis, physical activity, questionnaires, clinical measures and metabolomics. This holistic approach enables the assessment of more patient specific targets such as advices on treatment modalities. Ultimately, selection of patients, both from a patient’s as well as orthopaedic surgeon’s perspective, will be optimised for the best intervention for the patient. Since osteoarthritis is the major driver for performing arthroplasty, the conclusion of this thesis will spark future studies into OA and its overall effect on disability. Show less
Conclusion. In patients with hand OA, joint-specific factors and coping styles decreasing activity and pacing were both associated with disability. Our results suggest that interventions should aim... Show moreConclusion. In patients with hand OA, joint-specific factors and coping styles decreasing activity and pacing were both associated with disability. Our results suggest that interventions should aim at joint specific complaints as well as changing coping styles to improve functional outcome. Show less
Wijngaard, I.R. van den; Algra, A.; Nijeholt, G.J.L.A.; Boiten, J.; Wermer, M.J.H.; Walderveen, M.A.A. van 2015
