Invest in ME Research 2016

Den 3 juni 2016 anordnades den 11:e internationella konferensen Invest in ME Research i London. Bland deltagarna från 18 olika länder fanns Kerstin Heiling (RME Sverige) och Henrik Fransson (RME Stockholm). Utifrån våra minnesanteckningar beskriver vi här vad de olika forskarna förmedlade, vilket kan beskrivas som ett pussel där man nu ser hur bitar som tidigare varit åtskilda börjar passa ihop

Mental health and self-image among deaf and hard of hearing children.

Mental health and self-image among deaf and hard of hearing children (ages 11-18 years) in southern Sweden was investigated. The children (N = 111) attended special schools for the deaf (n = 28), special schools for the hard of hearing (n = 23), and regular schools where hard of hearing children were mainstreamed (n = 60). The Strengths and Difficulties Questionnaire (Goodman, 1997) was used to screen mental health and the "I Think I Am" questionnaire Ouvinen-Birgerstam (1982, 1984) to measure self-esteem. The study shows that hard of hearing children seem to do as well, as a group, as other children in Swedish society. Mean SDQ and ITIA scores indicated that the mainstreamed students and the students in special schools for the hard of hearing had higher levels of rated mental health and self-image than the students in schools for the deaf

Validation of the Strengths and Difficulties Self-Report in Norwegian Sign Language

The majority of studies on mental health in deaf and hard-of-hearing (DHH) children report a higher level of mental health problems. Inconsistencies in reports of prevalence of mental health problems have been found to be related to a number of factors such as language skills, cognitive ability, heterogeneous samples as well as validity problems caused by using written measures designed for typically hearing children. This study evaluates the psychometric properties of the self-report version of the Strengths and Difficulties Questionnaire (SDQ) in Norwegian Sign Language (NSL; SDQ-NSL) and in written Norwegian (SDQ-NOR). Forty-nine DHH children completed the SDQ-NSL as well as the SDQ-NOR in randomized order and their parents completed the parent version of the SDQ-NOR and a questionnaire on hearing and language-related information. Internal consistency was examined using Dillon-Goldstein's rho, test-retest reliability using intraclass correlations, construct validity by confirmatory factor analysis (CFA), and partial least squares structural equation modeling. Internal consistency and test-retest reliability were established as acceptable to good. CFA resulted in a best fit for the proposed five-factor model for both versions, although not all fit indices reached acceptable levels. The reliability and validity of the SDQ-NSL seem promising even though the validation was based on a small sample size

Quality of Life, family function and mental health of deaf and hard-of-hearing adolescents in mental health services in Norway - a pilot study

Object: The main aim of this study was to gain a better understanding of Quality of Life, family functioning and mental health for Norwegian deaf and hard-of-hearing children and adolescents. Method: We used the Inventory of Life Quality for Children (ILC), McMaster Family Assessment Device (GFS) and the Strengths and Difficulties Questionnaire (SDQ). These instruments were used to assess Quality of Life, family functioning, emotional and behavioural problems in deaf and hard-of-hearing (n= 20) and hearing Child and Adolescent Psychiatry (CAP) patients (n = 717) as well as in a hearing normative sample (n= 1032). Results: We found that Quality of Life and family functioning of deaf and hard-of-hearing (DHH) CAP patients were comparable to those of their hearing CAP peers. DHH CAP patients showed a non-significant tendency to report more emotional and behavioural difficulties than hearing CAP patients. Conclusion: Based on these results, Norwegian deaf and hard-of-hearing CAP patients score similarly to their hearing peers in CAP on measures of Quality of Life and family function, whereas there may be a tendency for DHH CAP patients to report more emotional and behavioural problems than hearing CAP patients. Due to the very small sample size more research is needed on the subject

Quality of Life, family function and mental health of deaf and hard-of-hearing adolescents in mental health services in Norway - a pilot study

Object: The main aim of this study was to gain a better understanding of Quality of Life, family functioning and mental health for Norwegian deaf and hard-of-hearing children and adolescents. Method: We used the Inventory of Life Quality for Children (ILC), McMaster Family Assessment Device (GFS) and the Strengths and Difficulties Questionnaire (SDQ). These instruments were used to assess Quality of Life, family functioning, emotional and behavioural problems in deaf and hard-of-hearing (n= 20) and hearing Child and Adolescent Psychiatry (CAP) patients (n = 717) as well as in a hearing normative sample (n= 1032). Results: We found that Quality of Life and family functioning of deaf and hard-of-hearing (DHH) CAP patients were comparable to those of their hearing CAP peers. DHH CAP patients showed a non-significant tendency to report more emotional and behavioural difficulties than hearing CAP patients. Conclusion: Based on these results, Norwegian deaf and hard-of-hearing CAP patients score similarly to their hearing peers in CAP on measures of Quality of Life and family function, whereas there may be a tendency for DHH CAP patients to report more emotional and behavioural problems than hearing CAP patients. Due to the very small sample size more research is needed on the subject.publishedVersion©This is an Open Access Article which permits unrestricted noncommercial use, provided the original work is properly cited

Psychometric properties of the Inventory of Life Quality in children and adolescents in Norwegian Sign Language

Background: Several studies have assessed the Quality of Life (QoL) in Deaf and hard-of-hearing (DHH) children and adolescents. The findings from these studies, however, vary from DHH children reporting lower QoL than their typically hearing (TH) peers to similar QoL and even higher QoL. These differences have been attributed to contextual and individual factors such as degree of access to communication, the participants’ age as well as measurement error. Using written instead of sign language measures has been shown to underestimate mental health symptoms in DHH children and adolescents. It is expected that translating generic QoL measures into sign language will help gain more accurate reports from DHH children and adolescents, thus eliminating one of the sources for the observed differences in research conclusions. Hence, the aim of the current study is to translate the Inventory of Life Quality in Children and Adolescents into Norwegian Sign Language (ILC-NSL) and to evaluate the psychometric properties of the self-report of the ILC-NSL and the written Norwegian version (ILC-NOR) for DHH children and adolescents. The parent report was included for comparison. Associations between child self-report and parent-report are also provided. Methods: Fifty-six DHH children completed the ILC-NSL and ILC-NOR in randomized order while their parents completed the parent-report of the ILC-NOR and a questionnaire on hearing- and language-related information. Internal consistency was examined using Dillon-Goldstein’s rho and Cronbach’s alpha, ILC-NSL and ILC-NOR were compared using intraclass correlation coefficients. Construct validity was examined by partial least squares structural equation modeling (PLS-SEM). Results: Regarding reliability, the internal consistency was established as acceptable to good, whereas the comparison of the ILC-NSL with the ILC-NOR demonstrated closer correspondence for the adolescent version of the ILC than for the child version. The construct validity, as evaluated by PLS-SEM, resulted in an acceptable fit for the proposed one-factor model for both language versions for adolescents as well as the complete sample. Conclusion: The reliability and validity of the ILC-NSL seem promising, especially for the adolescent version, even though the validation was based on a small sample of DHH children and adolescents

Psychometric properties of the Inventory of Life Quality in children and adolescents in Norwegian Sign Language

Background Several studies have assessed the Quality of Life (QoL) in Deaf and hard-of-hearing (DHH) children and adolescents. The findings from these studies, however, vary from DHH children reporting lower QoL than their typically hearing (TH) peers to similar QoL and even higher QoL. These differences have been attributed to contextual and individual factors such as degree of access to communication, the participants’ age as well as measurement error. Using written instead of sign language measures has been shown to underestimate mental health symptoms in DHH children and adolescents. It is expected that translating generic QoL measures into sign language will help gain more accurate reports from DHH children and adolescents, thus eliminating one of the sources for the observed differences in research conclusions. Hence, the aim of the current study is to translate the Inventory of Life Quality in Children and Adolescents into Norwegian Sign Language (ILC-NSL) and to evaluate the psychometric properties of the self-report of the ILC-NSL and the written Norwegian version (ILC-NOR) for DHH children and adolescents. The parent report was included for comparison. Associations between child self-report and parent-report are also provided. Methods Fifty-six DHH children completed the ILC-NSL and ILC-NOR in randomized order while their parents completed the parent-report of the ILC-NOR and a questionnaire on hearing- and language-related information. Internal consistency was examined using Dillon-Goldstein’s rho and Cronbach’s alpha, ILC-NSL and ILC-NOR were compared using intraclass correlation coefficients. Construct validity was examined by partial least squares structural equation modeling (PLS-SEM). Results Regarding reliability, the internal consistency was established as acceptable to good, whereas the comparison of the ILC-NSL with the ILC-NOR demonstrated closer correspondence for the adolescent version of the ILC than for the child version. The construct validity, as evaluated by PLS-SEM, resulted in an acceptable fit for the proposed one-factor model for both language versions for adolescents as well as the complete sample. Conclusion The reliability and validity of the ILC-NSL seem promising, especially for the adolescent version, even though the validation was based on a small sample of DHH children and adolescents

Deaf and hard-of-hearing children and adolescents’ mental health, Quality of Life and communication

Abstract Mental health problems and lower Quality of Life (QoL) are more common in deaf and hard-of-hearing – (D)HH – children than in typically hearing (TH) children. Communication has been repeatedly linked to both mental health and QoL. The aims of this study were to compare mental health and QoL between signing deaf and hard-of-hearing (DHH), hard-of-hearing (HH) and TH children and to study associations between mental health/QoL and severity of hearing loss and communication. 106 children and adolescents (mean age 11;8; SD = 3.42), 59 of them DHH and 47 HH, and their parents reported child mental health and QoL outcomes. Parents also provided information about their children's communication, hearing loss and education while their children's cognitive ability was assessed. Although (D)HH and their parents rated their mental health similar to their TH peers, about twice as many (D)HH children rated themselves in the clinical range. However, (D)HH children rated their QoL as similar to their TH peers, while their parents rated it significantly lower. Associations between communicative competence, parent-reported mental health and QoL were found, whereas severity of hearing loss based on parent-report had no significant association with either mental health or QoL. These results are in line with other studies and emphasise the need to follow up on (D)HH children's mental health, QoL and communication

Second asymptomatic carotid surgery trial (ACST-2) : a randomised comparison of carotid artery stenting versus carotid endarterectomy

Background: Among asymptomatic patients with severe carotid artery stenosis but no recent stroke or transient cerebral ischaemia, either carotid artery stenting (CAS) or carotid endarterectomy (CEA) can restore patency and reduce long-term stroke risks. However, from recent national registry data, each option causes about 1% procedural risk of disabling stroke or death. Comparison of their long-term protective effects requires large-scale randomised evidence. Methods: ACST-2 is an international multicentre randomised trial of CAS versus CEA among asymptomatic patients with severe stenosis thought to require intervention, interpreted with all other relevant trials. Patients were eligible if they had severe unilateral or bilateral carotid artery stenosis and both doctor and patient agreed that a carotid procedure should be undertaken, but they were substantially uncertain which one to choose. Patients were randomly allocated to CAS or CEA and followed up at 1 month and then annually, for a mean 5 years. Procedural events were those within 30 days of the intervention. Intention-to-treat analyses are provided. Analyses including procedural hazards use tabular methods. Analyses and meta-analyses of non-procedural strokes use Kaplan-Meier and log-rank methods. The trial is registered with the ISRCTN registry, ISRCTN21144362. Findings: Between Jan 15, 2008, and Dec 31, 2020, 3625 patients in 130 centres were randomly allocated, 1811 to CAS and 1814 to CEA, with good compliance, good medical therapy and a mean 5 years of follow-up. Overall, 1% had disabling stroke or death procedurally (15 allocated to CAS and 18 to CEA) and 2% had non-disabling procedural stroke (48 allocated to CAS and 29 to CEA). Kaplan-Meier estimates of 5-year non-procedural stroke were 2·5% in each group for fatal or disabling stroke, and 5·3% with CAS versus 4·5% with CEA for any stroke (rate ratio [RR] 1·16, 95% CI 0·86-1·57; p=0·33). Combining RRs for any non-procedural stroke in all CAS versus CEA trials, the RR was similar in symptomatic and asymptomatic patients (overall RR 1·11, 95% CI 0·91-1·32; p=0·21). Interpretation: Serious complications are similarly uncommon after competent CAS and CEA, and the long-term effects of these two carotid artery procedures on fatal or disabling stroke are comparable