BACKGROUND: Despite the recent advancements in the design and manufacture of prostheses for individuals with craniofacial irregularity and amputation, these individuals tend to become self-conscious about their appearance. The aim of this study was to investigate the reliability and validity of Persian version of the Derriford Appearance Scale24 (P-DAS24) for a sample of individuals with craniofacial irregularity and limb loss. METHODOLOGY: Reliability of the P-DAS24 was determined by computing internal consistency and test-retest reliability utilizing Cronbach’s alpha coefficient and Pearson’s correlation coefficient. Discriminant validity was investigated with comparing the total score of the P-DAS24 between disfigured participants and those with no appearance problem. Known-groups validity was evaluated regarding the participants’ gender and their level of involvement. FINDINGS: The sample size comprised of 251 individuals with disfigurement and 101 without disfigurement who were deemed normal in appearance. The P-DAS24 showed satisfactory internal consistency (Cronbach’s alpha = 0.89) and excellent test-retest reliability (r = 0.96). The total score of the P-DAS24 showed a statistically significant difference between individuals deemed disfigured or normal (P=0.01). The total scores P-DAS24 in individuals with different levels of involvement were significantly different (P<0.001). The scores of the DAS2, DAS18, DAS21, and DAS24 were significantly different between men and women (P<0.01, <0.01, 0.03, and 0.01, respectively). CONCLUSION: The P-DAS24 is a valid and reliable tool that may be utilized in clinical practice and researches to assess the outcomes of prosthetic reconstructions in individuals with disfigurement. Layman's Abstract In social interactions and experiences, appearance plays an important role. Disfigured subjects face many difficulties in their daily life compared to normal people or people deemed attractive. Generally, the perception of each individual regarding his/her appearance is influenced by two fundamental factors. The first factor is the feedback that one receives from others and the second factor is the person's self-perception that is affected by their mental health and quality of life. Limb amputation is one of the leading causes of disfigurement in low to middle-income countries. Despite the recent advancements in the design and manufacture of prostheses to improve their natural size, shape, and movement, these individuals tend to become self-conscious about their appearance. To evaluate the psychosocial problems of people with visible difference, a standard and valid tool is needed. One of these tools is the Derriford Appearance Scale 24 (DAS24). The aim of this study was to translate and cross-culturally adapt the original English version of the DAS24 to provide a Persian version. In this study a total of 251 individuals with disfigurement and 101 without disfigurement who were considered normal in appearance were included. Our results have shown that the Persian version of DAS24 is a valid and reliable tool for the clinical evaluation of the appearance-related distress, anxiety, and self-consciousness experienced by individuals with visual difference on a daily basis in Persian-speaking countries. Article PDF Link: https://jps.library.utoronto.ca/index.php/cpoj/article/view/41454/32196 How To Cite: Khani A, Babaee T, Khaghani A, Nakhaee M, Fatahi Z, Moss T. Reliability and validity testing of the Persian version of the Derriford Appearance Scale 24 in a sample of individuals with craniofacial irregularity and amputation. Canadian Prosthetics & Orthotics Journal. 2023; Volume 6, Issue 1, No.3. https://doi.org/10.33137/cpoj.v6i1.41454 Corresponding Author: Taher Babaee, PhDRehabilitation Research Center, Department of Orthotics and Prosthetics, School of Rehabilitation Sciences, Iran University of Medical sciences, Tehran, Iran.E-Mail: babaee.t@iums.ac.irORCID ID: https://orcid.org/0000-0002-1487-2374

Purpose Hypermobility Spectrum Disorders (HSD) and Hypermobile Ehlers-Danlos Syndrome (hEDS) are heritable connective tissue disorders associated with joint instability and pain, but with scant guidance for supporting patients. The aim was to determine recommendations for an HSD/hEDS self-management intervention. Materials and methods Barriers to self-management were mapped onto the Theoretical Domains Framework (TDF) and Capability, Opportunity, Motivation-Behaviour (COM-B) model in a behavioural analysis. A modified Nominal Group Technique was used to prioritise behaviour change technique (BCT) interventions (n = 9 women). Results Possible BCTs incorporated: Education Incorporating self-help strategies, education to improve their knowledge of HSD/hEDS, and how to judge information about HSD/hEDS. Training In activity pacing, assertiveness and communication skills, plus what to expect during pregnancy, when symptoms can worsen. Environmental restructuring and enablement Support from occupational therapists to maintain independence at work and home. Modelled behaviour That illustrates how other people with HSD/hEDS have coped with the psychosocial impact. Conclusions This study is the first to apply theoretically-informed approaches to the management of HSD/hEDS. Participants indicated poor access to psychological support, occupational therapy and a lack of knowledge about HSD/hEDS. Future research should evaluate which intervention options would be most acceptable and feasible.

Cleft lip and palate (CLP) affects a person's facial appearance and can cause appearance-related distress. Appearance-related distress and its manifestations are not fully understood. Women with CLP tend to experience a higher degree of distress as well as undergo more aesthetic revisions than men. The aim of this study was to investigate if self-reported appearance-related gender differences occur among adults born with unilateral CLP using the Derriford Appearance Scale 24 (DAS24). One hundred sixty two consecutive patients, 107 men and 55 women, with unilateral CLP and no associated syndromes treated at the same hospital were asked to answer the DAS24. A mixed methods approach was used to analyse the questionnaires both quantitively and qualitatively. Fifty men and 30 women participated, the results showed that the aspects of appearance considered most disturbing was cleft-related among both genders, most common in regards to the nose. Three themes were found: acceptance, cleft features, and general appearance issues. The quantitative part showed that women reported higher appearance-related social anxiety and avoidance than men. This study demonstrated that appearance-related distress is present in both genders; however, women expressed more distress than men. Moreover, non-cleft as well as cleft features are of importance for self-reported dissatisfaction.

The changes in appearance of people living with HIV/AIDS (PLHA) interferes with how people around them react to their body, how social interactions take place, and how each person perceives and accepts their body. The definition of itself can be severely challenged when the body changes as a result of illness and the person does not look healthier anymore. People living with HIV/AIDS (PLHA) are an especially vulnerable group when it comes to “distress” and the psychosocial impact of appearance, yet the assessment of body image changes in these people was subjective in Brazil. The aim of this paper was to assess the psychometric properties of the Brazilian version of Derriford Appearance Scale 24 (DAS-24) for a sample of Brazilians living with HIV/AIDS. A sample of 400 patients were recruited from an HIV/AIDS ambulatory, aged between 18 and 78 years, of both sexes. The psychometric properties of DAS-24 were investigated while using confirmatory factor analysis (CFA), with unweighted least square estimation and listwise deletion for missing data. The adjustment of three structural models previously established for DAS-24 (single-factor, two-factor, and three-factor) was investigated. Evidences of construct validity—convergent and discriminant—and internal consistency—Cronbach’s alpha and construct reliability—were also generated for the measure model. The results showed that the one-factor model had the best adjustment, after eliminating items 8, 17, and 20, and accepting the covariance of errors between items 4 and 10; 9 and 23; 11 and 14; and, 14 and 22. Additionally, validity and reliability evidence were satisfactory for the model. The Brazilian Portuguese version of DAS-24 seems to be a psychometrically sound scale for measuring body image distress for people living with HIV/AIDS (PLHA).

Background In this review, we examine the use of DAS59 and DAS24 in the scientific literature and in particular how the use of these questionnaires has improved the understanding and practice of plastic and reconstructive surgery. Methods A systematic review protocol was developed in accordance with the Preferred Reporting for Items for Systematic Review and Meta-Analys-Protocol (PRISMA-P) guide. A multi-step search of the PubMed, MEDLINE, Embase, Premedeline, Ebase, CINAHL, PsychINFO and Cochrane databases was performed to identify studies on body image using DAS59 and DAS24. Results The literature review yielded 28 articles with DAS59 and 32 articles with DAS24 from peer-reviewed journals met our inclusion criteria and were included in the analysis. Since its inception in 2001, the number of publications incorporating the DAS has increased each year with a total of 3.483 patients for DAS59 and 6.012 patients for DAS24. The prospective study design was the most prevalent, being used in 50% of publications ( n = 30), 57% for DAS59, 43% for DAS24. The DAS59 was administered in a cross-sectional design in 21% of studies ( n = 6) and DAS24 41% ( n = 13). The DAS59 was administered in a retrospective design in 18% of studies ( n = 5) and DAS24 9% ( n = 3). We reported only one case series for DAS59 and 2 for DAS24. Conclusions The DAS59 and DAS24 are versatile self-assessment tools that can be used in different medical and surgical environments. Level of evidence: not ratable.

Background: Joint Hypermobility Syndrome (JHS) and Ehlers-Danlos Syndrome Hypermobility Type (EDS-HT) are heritable disorders of connective tissue that can cause joint instability and pain and are associated with increased anxiety and depression. There is currently little UK guidance for supporting patients with JHS/EDS-HT 1 . The analysis presented here used the Behaviour Change Wheel (made up of the Theoretical Domains Framework (TDF) and Capability, Opportunity, Motivation and Behaviour (COM-B) model 2 ) to identify possible intervention options to improve self-management in people with JHS/EDS-HT. Objectives: To determine recommendations for the components of a behaviour change intervention for people with JHS or EDS-HT. Methods: Data from: 1) A systematic review and thematic synthesis of the literature examining adults’ lived experiences of JHS/EDS 3 and 2) A thematic analysis of interview data where UK adults with JHS/EDS-HT (n=17, 14 women, 3 men) discussed the psychosocial impact of the condition on their lives 4 , were mapped onto the TDF and COM-B in a behavioural analysis. A modified Nominal Group Technique focus group (n=9, all women) explored which interventions identified by the TDF/COM-B mapping exercise were most important to them. Results: Participants prioritised a range of potential self-management interventions, including: Education : Participants wanted greater support to improve their knowledge of JHS/EDS-HT, including self-help strategies for coping with injury, fatigue and overexertion, and how to evaluate information about their condition. Training : In activity pacing, assertiveness and communication skills, and what to expect during pregnancy, when symptoms of JHS/EDS-HT can worsen. Environmental restructuring and enablement: Support from occupational therapists to maintain independence at home. Enablement of access to CBT, mindfulness and emotional support. Modelled behaviour: Positive first-person narratives that address how other patients with JHS/EDS-HT have coped with anxiety, depression, distress, fear, frustration and feelings of loss. Conclusion: This study is the first to apply theoretically-informed approaches to the management of JHS/EDS-HT. Through a modified nominal group technique, potential behaviour change interventions for addressing barriers to self-management have been prioritised. Discussion with participants indicated poor access to psychological support, occupational therapy and a lack of knowledge of JHS/EDS-HT. Future research with healthcare professional and patient stakeholder groups will further evaluate which intervention options would be most acceptable and feasible for the management of JHS/EDS-HT. References: [1]Palmer, S., Terry, R. Rimes, K.A., Clark, C., Simmonds, J. & Horwood, J. (2016). Physiotherapy management of joint hypermobility syndrome – a focus group study of patient and health professional perspectives. Physiotherapy, http://dx.doi.org/10.1016/j.physio.2015.05.001 . [2]Michie, S., van Stralen, M.M. & West, R. (2011). The behaviour change wheel: A new method for characterising and designing behaviour change interventions. Implementation Science, 6(42). [3]Bennett, S.E., Walsh, N., Moss, T. and Palmer, S. (2019a) “The lived experience of joint hypermobility and Ehlers-Danlos Syndromes: A systematic review and thematic synthesis.” Physical Therapy Reviews , 24 (1-2). pp. 12-28. ISSN 1083-3196 [4]Bennett, S.E., Walsh, N., Moss, T. and Palmer, S. (2019b) “Understanding the psychosocial impact of Joint Hypermobility Syndrome and Ehlers-Danlos Syndrome Hypermobility Type: A qualitative interview study.” Disability and Rehabilitation . ISSN 0963-8288 Disclosure of Interests: None declared

Purpose: Little attention has been paid to psychosocial factors in Joint Hypermobility Syndrome and Ehlers-Danlos Syndrome (hypermobility type). This study sought to identify the psychosocial impact by examining participants' lived experiences; and identify characteristics of effective coping. Materials and methods: Adults with Joint Hypermobility Syndrome and Ehlers-Danlos Syndrome (Hypermobility Type) were invited to discuss their own lived experiences and the impact of the condition. All met recognized criteria for clinically significant joint hypermobility, and had a self-confirmed diagnosis. The transcripts were coded and analyzed using inductive thematic analysis. Results: Seventeen participants (14 women, 3 men) purposively selected to broadly represent different genders, ages and ethnicities. Analysis identified five key themes: healthcare limitations, a lack of awareness of Joint Hypermobility, and Ehlers-Danlos Syndrome (Hypermobility Type) among healthcare professionals; a restricted life; social stigma; fear of the unknown; and ways of coping. Conclusions: The results highlight the significant psychosocial impact on participants' lives. Coping approaches identified included acceptance, building social networks, learning about joint hypermobility, and adapting activities. Physiotherapists supported regular exercise. Further research should consider potential interventions to improve information provision, address psychological support, and increase awareness of hypermobility among healthcare professionals.

Aim To investigate primary care clinicians' views of a prototype locally relevant, real-time viral surveillance system to assist diagnostic decision-making and antibiotic prescribing for paediatric respiratory tract infections (RTI). Clinicians' perspectives on the content, anticipated use and impact were explored to inform intervention development. Background Children with RTIs are overprescribed antibiotics. Pressures on primary care and diagnostic uncertainty can lead to decisional biases towards prescribing. We hypothesise that real-time paediatric RTI surveillance data could reduce diagnostic uncertainty and help reduce unnecessary antibiotic prescribing. Methodology Semistructured one-to-one interviews with 21 clinicians from a range of urban general practitioner surgeries explored the clinical context and views of the prototype system. Transcripts were analysed using thematic analysis. Results Though clinicians self-identified as rational (not over)prescribers, cognitive biases influenced antibiotic prescribing decisions. Clinicians sought to avoid 'anticipated regret' around not prescribing for a child who then deteriorated. Clinicians were not aware of formal infection surveillance information sources (tending to assume many viruses are around), perceiving the information as novel and potentially useful. Perceptions of surveillance information as presented included: not relevant to decision-making/management; useful to confirm decisions post hoc; and increasing risks of missing sick children. Clinicians expressed wariness of using population-level data to influence individual patient decision-making and expressed preference for threat (high-risk) information identified by surveillance, rather than reassuring information about viral RTIs. Conclusions More work is needed to develop a surveillance intervention if it is to beneficially influence decision-making and antibiotic prescribing in primary care. Key challenges for developing interventions are how to address cognitive biases and how to communicate reassuring information to risk-oriented clinicians.

Introduction: Body image can be defined as the representation of beliefs, emotions and perceptions about the body itself, manifested in behaviors directed to the body. When the body changes because of a disease and does not seem healthy, the self-concept may be severely challenged. People living with HIV/AIDS (PLHA) are particularly vulnerable to the distress and psychosocial impact of appearance, but in Brazil the assessment of those body image changes was subjective because there was not an available scale in Brazilian Portuguese to assess body image changes in clinical practice or research. Objective: To carry out the cross-cultural adaptation to the Brazilian Portuguese of the Derriford Appearance Scale 24 (DAS-24), with the verification of the linguistic, semantic, conceptual and cultural equivalence of the people living with HIV/AIDS in Brazil. Methods: We followed the five stages of culturally sensitive translation: direct translations, synthesis of translations, back-translations, expert committee meeting and pre-tests. The process of cultural adaptation was presented in a descriptive and analytical way, following patterns of methodological studies. The minimum, maximum and median values of the responses of each item were calculated from the pool of data from the third pretest group of 50 participants. The median of the item scores, the correlation on each item with the total score and the internal reliability, were calculated using the Cronbach alpha test. Results: The analysis of the responses of the last pre-test group indicated that attention must be given to itemsA, H, T and V in a future psychometric study. The present study is not enough for this scale to be used in clinical practice. To ensure that the culturally adapted instrument generates valid and reliable data, a subsequent study investigating its psychometric properties should be conducted. Conclusion: The cross-cultural adaptation of the Derriford Appearance Scale 24 (DAS-24) in its components of linguistic, semantic, conceptual and cultural equivalence to Brazilian Portuguese for the population of people living with HIV/AIDS was fully carried out. Despite this achievement, it is emphasized that the use of the Brazilian versionof DAS-24 in research and clinical routine is advised only after a psychometric study with this instrument.

Introduction: Body image can be defined as the representation of beliefs, emotions and perceptions about the body itself, manifested in behaviors directed to the body. When the body changes because of a disease and does not seem healthy, the self-concept may be severely challenged. People living with HIV/AIDS (PLHA) are particularly vulnerable to the distress and psychosocial impact of appearance, but in Brazil the assessment of those body image changes was subjective because there was not an available scale in Brazilian Portuguese to assess body image changes in clinical practice or research. Objective: To carry out the cross-cultural adaptation to the Brazilian Portuguese of the Derriford Appearance Scale 24 (DAS-24), with the verification of the linguistic, semantic, conceptual and cultural equivalence of the people living with HIV/AIDS in Brazil. Methods: We followed the five stages of culturally sensitive translation: direct translations, synthesis of translations, back-translations, expert committee meeting and pre-tests. The process of cultural adaptation was presented in a descriptive and analytical way, following patterns of methodological studies. The minimum, maximum and median values of the responses of each item were calculated from the pool of data from the third pretest group of 50 participants. The median of the item scores, the correlation on each item with the total score and the internal reliability, were calculated using the Cronbach alpha test. Results: The analysis of the responses of the last pre-test group indicated that attention must be given to items A, H, T and V in a future psychometric study. The present study is not enough for this scale to be used in clinical practice. To ensure that the culturally adapted instrument generates valid and reliable data, a subsequent study investigating its psychometric properties should be conducted. Conclusion: The cross-cultural adaptation of the Derriford Appearance Scale 24 (DAS-24) in its components of linguistic, semantic, conceptual and cultural equivalence to Brazilian Portuguese for the population of people living with HIV/AIDS was fully carried out. Despite this achievement, it is emphasized that the use of the Brazilian version of DAS-24 in research and clinical routine is advised only after a psychometric study with this instrument.

We intend to contribute towards a better understanding of the variables that affect the Schematic Investment and Self-consciousness of the appearance of those who suffer from acquired facial disfigurement. The sample consisted of 67 individuals who have been submitted to plastic and reconstructive surgery and completed a questionnaire evaluating the influence of personality traits, optimism, self-concept, emotions and perception of satisfaction with social support, and with the perception of appearance during their admittance to the hospital, and 12 months after the surgery. There were meaningful statistical differences in both evaluation moments for the variables Neuroticism, Extraversion, Openness, Agreeableness, Conscientiousness, Optimism, Positive and Negative Affect, Self-Concept, and Social Support Satisfaction. In both evaluations, Self-conscientiousness of Appearance reveals a positive relationship with Neuroticism and negative relation with Self-concept. Results show that Schematic Investment and Self-conscientiousness of appearance vary in time and that there are variants that influence the psychological adjustment to acquired facial disfigurement.

Many health conditions impact upon an individual’s appearance and result in an altered appearance (‘visible difference’). The presence of visible difference is associated with a variety of psychosocial difficulties and challenges, yet calls for an integrated theory of adjustment remain largely unanswered. This qualitative research, conducted in the UK, drew upon 22 interviews conducted with participants who had a variety of visible differences. It examined their experiences and reflections related to their difference and the impact that their visible difference had upon their lives. A thematic analysis produced two themes. The first of which was predominantly concerned with the impact of visible difference upon the individual whilst the second captured the inherently social nature of appearance and appearance based judgements. The analysis is considered in light of the contention that an integrated theory of adjustment to visible difference is required and participants’ experiences with healthcare professionals and the implications for those providing care are introduced.

Education outreach in schools has been identified as a critical route to influence children’s perceptions and capabilities for Science, Technology, Engineering, and Mathematics careers. Evidence suggests that providing non-teaching professionals like engineers with training programmes and structured experience can boost perceived self-efficacy to perform education outreach, which in turn means better quality and more frequent public engagement. A validated measure of the construct of perceived self-efficacy for engineering education outreach will be useful for effective science communication participation, research, and practise. This article presents the methods used to develop the Engineering Outreach Self-efficacy Scale (EOSS), along with initial reliability and validation results to support the scale’s use. The 10-item scale was found to have good internal consistency and reliability (Cronbach’s alpha α = .92) with a sample of 160 engineers. The scale had convergent validity with general self-efficacy. Engineers with more experience of education outreach had higher self-efficacy for engineering education outreach. There were no significant differences between male and female engineers. Initial test-retest results showed engineers receiving training in education outreach significantly improved their EOSS scores, indicating capability to detect change over time. It is hoped this scale will prove useful for further evaluation of engineering education outreach and public engagement with science activities.

Background: Joint Hypermobility Syndrome (JHS) and Ehlers-Danlos Syndrome (EDS) are heritable connective tissue disorders characterised by joint instability, pain, anxiety, depression and poor quality of life. However, peoples' lived experiences are not well understood. Objective: To understand the lived experiences of people with JHS and EDS. Methods: A systematic review was conducted using PRISMA guidelines. Critical appraisal and a thematic synthesis of participants' lived experiences were conducted. Eight online databases were searched from 1990 to February 2018: AMED, CINAHL, EMBASE, MEDLINE, PubMed, PsychINFO, SPORTDiscus and the Cochrane Library. Eligibility criteria were: (1) People with either JHS or EDS, clearly distinguished from generalised joint laxity; (2) Qualitative studies, or mixed qualitative and quantitative studies with qualitative data reported independently and (3) Published in English. Results: A total of nine studies were included. Five main themes were identified: (1) Lack of professional understanding; (2) Restricted life; (3) Social stigma; (4) Trying to 'keep up' and (5) Gaining control. The implications of these results are explored. Conclusions: Further qualitative research is required to examine the impact of JHS/EDS on a wider range of participants and in greater depth.

OBJECTIVE:To date, research investigating the psychological impact of craniofacial conditions has produced variability across outcomes. The aims of this article were to summarize the challenges that may contribute to this variability, and to offer alternative perspectives and approaches to guide future research and practice.DESIGN:A comprehensive evaluation of papers exploring adjustment to congenital craniofacial conditions was conducted. Methodological approaches and underlying conceptual issues were identified and summarized.RESULTS:The conceptual limitations identified include inherent challenges pertaining to the multifactorial and fluctuating nature of adjustment, a lack of consensus regarding the primary constituents of a positive outcome, scant use of appropriate models and theories, and a predominant focus on "deficits" over "strengths." The methodological shortcomings identified include a lack of representative samples, biomedical inclusion/exclusion criteria, inconsistency in measurement, a relative absence of the patient perspective, variability in approaches to data analysis and interpretation, and the failure to draw on knowledge from other disciplines and related fields of health research. Findings are believed to be relevant to all disciplines involved in craniofacial research and practice.CONCLUSIONS:Existing literature remains markedly affected by a range of conceptual and methodological challenges, despite these challenges being identified 25 years ago. The present article proposes that a shift in the way we conceptualize and study craniofacial conditions is needed, in order to construct a comprehensive understanding of adjustment to craniofacial conditions, and to address the key unanswered questions important to all stakeholders.

The association between disfigurement ('visible difference') and romantic relationships has received relatively little consideration in the research literature. This qualitative research, conducted in the United Kingdom, explored participants' accounts of their visible difference and romantic life. Semi-structured interviews were conducted with 22 participants who had a variety of visible differences. Inductive thematic analysis demonstrated that participants understood their difference as having a pervasive and enduring impact. These encompassed challenges that must be negotiated in the formation of romantic relationships, including feeling unattractive to others and feeling personally devalued. Relevant physical and sexual sequelae were comprised of anxieties regarding informing partners of a difference, impacted sexual activity, and concerns about heritability. Finally, the potential for partner support and acceptance to positively impact romantic relationships was recognised. This research highlighted the need to extend our understanding of visible difference and intimate relationships and to develop effective interventions to ameliorate appearance-related concern.

Objective Valid measures of appearance concern are needed in systemic sclerosis (SSc), a rare, disfiguring autoimmune disease. The Derriford Appearance Scale-24 (DAS-24) assesses appearance-related distress related to visible differences. There is uncertainty regarding its factor structure, possibly due to its scoring method. Design Cross-sectional survey. Setting Participants with SSc were recruited from 27 centres in Canada, the USA and the UK. Participants who self-identified as having visible differences were recruited from community and clinical settings in the UK. Participants Two samples were analysed (n=950 participants with SSc; n=1265 participants with visible differences). Primary and secondary outcome measures The DAS-24 factor structure was evaluated using two scoring methods. Convergent validity was evaluated with measures of social interaction anxiety, depression, fear of negative evaluation, social discomfort and dissatisfaction with appearance. Results When items marked by respondents as ‘not applicable’ were scored as 0, per standard DAS-24 scoring, a one-factor model fit poorly; when treated as missing data, the one-factor model fit well. Convergent validity analyses revealed strong correlations that were similar across scoring methods. Conclusions Treating ‘not applicable’ responses as missing improved the measurement model, but did not substantively influence practical inferences that can be drawn from DAS-24 scores. Indications of item redundancy and poorly performing items suggest that the DAS-24 could be improved and potentially shortened.

BackgroundExisting research examining those with Joint Hypermobility Syndrome (JHS) and Ehlers-Danlos Syndrome (Hypermobility Type) (EDS-HT) has predominately focused on factors such as pain, range of movement and physical function. However psychosocial factors have received much less attention.ObjectivesThis study sought to 1. Identify the psychosocial impact of JHS/EDS-HT by examining participants’ lived experiences, and; 2. Identify characteristics of effective coping with JHS/EDS-HT, using qualitative methods.MethodsAdults with JHS/EDS-HT took part in semi-structured telephone interviews to discuss their own lived experiences and the impact of the condition on their lives. All met the Hakim and Grahame (2003) five-item criteria for clinically significant joint hypermobility, and had a self-confirmed diagnosis of JHS/EDS-HT. The transcripts were coded using NVivo 10 and analysed using inductive thematic analysis.Results17 participants (14 women, 3 men) took part (age range 22–70, mean 38 years). The sample was purposively selected from across the UK to broadly represent different genders, ages and ethnicities. Inductive thematic analysis indicated five main themes: Healthcare limitations: All participants reported a lack of awareness of JHS/EDS-HT among healthcare professionals, and diagnosis typically took several years. Examples were given where local anaesthetics had either partly or completely failed, leaving patients aware of severe pain during surgical or dental procedures. A restricted life: Participants experienced a range of symptoms including joint pain and instability, fatigue, gastrointestinal issues, frequent dislocations and subluxations. Due to difficulty completing daily activities, some relied on their partners or family for support, but this led to feelings of guilt and shame. Social stigma: The invisible nature of their condition led to participants facing criticism and confrontations with others as they ‘looked fine’. Fears of being judged led some to hide their symptoms. Many felt frustrated and angry that due to fatigue or injury they could not keep up with friends, family or colleagues. Fear of the unknown: Not knowing when the next injury was going to occur, and how JHS/EDS-HT would affect them over time made participants especially fearful of declines in their physical ability. Many cited of a lack of reliable information about their condition, other than in published books or research journals. Psychological support to better cope with the enduring impact of JHS/EDS-HT on their lives was lacking. Ways of coping: Several coping approaches were identified by participants, including acceptance of their condition, building social networks, finding out more about JHS/EDS-HT and adapting their activities. Physiotherapists were instrumental in supporting participants to exercise regularly.ConclusionsThe results of this qualitative study highlight the significant psychosocial impact of JHS/EDS-HT on participants’ lives. Further research should consider potential interventions to improve information provision, address psychological support and increase awareness of JHS/EDS-HT among healthcare professionals.Reference[1] Hakim A, Grahame R. A simple questionnaire to detect hypermobility: An adjunct to the assessment of patients with diffuse musculoskeletal pain. International Journal of Clinical Practice2003;57(3):163–166.Disclosure of InterestNone declared