Heritable Connective Tissue Disorders (HCTD) show an overlap in the physical features that can evolve in childhood. It is unclear to what extent children with HCTD experience burden of disease. This study aims to quantify fatigue, pain, disability and general health with standardized validated questionnaires.METHODS: This observational, multicenter study included 107 children, aged 4-18 years, with Marfan syndrome (MFS), 58%; Loeys-Dietz syndrome (LDS), 7%; Ehlers-Danlos syndromes (EDS), 8%; and hypermobile Ehlers-Danlos syndrome (hEDS), 27%. The assessments included PROMIS Fatigue Parent-Proxy and Pediatric self-report, pain and general health Visual-Analogue-Scales (VAS) and a Childhood Health Assessment Questionnaire (CHAQ).RESULTS: Compared to normative data, the total HCTD-group showed significantly higher parent-rated fatigue T-scores (M = 53 (SD = 12), p = 0.004, d = 0.3), pain VAS scores (M = 2.8 (SD = 3.1), p < 0.001, d = 1.27), general health VAS scores (M = 2.5 (SD = 1.8), p < 0.001, d = 2.04) and CHAQ disability index scores (M = 0.9 (SD = 0.7), p < 0.001, d = 1.23). HCTD-subgroups showed similar results. The most adverse sequels were reported in children with hEDS, whereas the least were reported in those with MFS. Disability showed significant relationships with fatigue (p < 0.001, rs = 0.68), pain (p < 0.001, rs = 0.64) and general health (p < 0.001, rs = 0.59).CONCLUSIONS: Compared to normative data, children and adolescents with HCTD reported increased fatigue, pain, disability and decreased general health, with most differences translating into very large-sized effects. This new knowledge calls for systematic monitoring with standardized validated questionnaires, physical assessments and tailored interventions in clinical care.
Background: Physical therapy is regarded an effective treatment for temporomandibular disorders (TMD). Patients with TMD often report concomitant headache. There is, however, no overview of the effect of physical therapy for TMD on concomitant headache complaints. Objectives: The aim of this study is to systematically evaluate the literature on the effectiveness of physical therapy on concomitant headache pain intensity in patients with TMD. Data sources: PubMed, Cochrane and PEDro were searched. Study eligibility criteria: Randomized or controlled clinical trials studying physical therapy interventions were included. Participants: Patients with TMD and headache. Appraisal: The Cochrane risk of bias tool was used to assess risk of bias. Synthesis methods: Individual and pooled between-group effect sizes were calculated according to the standardized mean difference (SMD) and the quality of the evidence was rated using the GRADE approach. Results: and manual therapy on both orofacial region and cervical spine. There is a very low level of certainty that TMD-treatment is effective on headache pain intensity, downgraded by high risk of bias, inconsistency and imprecision. Limitations: The methodological quality of most included articles was poor, and the interventions included were very different. Conclusions: Physical therapy interventions presented small effect on reducing headache pain intensity on subjects with TMD, with low level of certainty. More studies of higher methodological quality are needed so better conclusions could be taken.
Background: In postoperative pain treatment patients are asked to rate their pain experience on a single uni-dimensional pain scale. Such pain scores are also used as indicator to assess the quality of pain treatment. However, patients may differ in how they interpret the Numeric Rating Scale (NRS) score. Objectives: This study examines how patients assign a number to their currently experienced postoperative pain and which considerations influence this process. Methods: A qualitative approach according to grounded theory was used. Twenty-seven patients were interviewed one day after surgery. Results: Three main themes emerged that influenced the Numeric Rating Scale scores (0–10) that patients actually reported to professionals: score-related factors, intrapersonal factors, and the anticipated consequences of a given pain score. Anticipated consequences were analgesic administration—which could be desired or undesired—and possible judgements by professionals. We also propose a conceptual model for the relationship between factors that influence the pain rating process. Based on patients’ score-related and intrapersonal factors, a preliminary pain score was ‘‘internally’’ set. Before reporting the pain score to the healthcare professional, patients considered the anticipated consequences (i.e., expected judgements by professionals and anticipation of analgesic administration) of current Numeric Rating Scale scores. Conclusions: This study provides insight into the process of how patients translate their current postoperative pain into a numeric rating score. The proposed model may help professionals to understand the factors that influence a given Numeric Rating Scale score and suggest the most appropriate questions for clarification. In this way, patients and professionals may arrive at a shared understanding of the pain score, resulting in a tailored decision regarding the most appropriate treatment of current postoperative pain, particularly the dosing and timing of opioid administration.
