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  • 1.
    Bessell, Alyson
    et al.
    England.
    Sell, Debbie
    England.
    Whiting, Penny
    England.
    Roulstone, Sue
    England.
    Albery, Liz
    England.
    Persson, Martin
    England.
    Verhoeven, Andrea
    England.
    Burke, Margaret
    England.
    Ness, Andy R
    England.
    Speech and language therapy interventions for children with cleft palate: a systematic review2013In: The Cleft Palate-Craniofacial Journal, ISSN 1055-6656, E-ISSN 1545-1569, Vol. 50, no 1, p. e1-e17Article in journal (Refereed)
    Abstract [en]

    Objective :  (1) To examine the evidence for the effectiveness of differences in timing and type of speech and language therapy for children with cleft palate with or without a cleft lip and (2) to identify types of interventions assessed. Design :  Nine databases, including MEDLINE and EMBASE, were searched between inception and March 2011 to identify published articles relating to speech and language therapy for children with cleft palate with or without cleft lip. Studies that included at least 10 participants and reported outcome measures for speech and/or language measures were included. Studies where the experimental group had less than 90% of children with cleft palate with or without cleft lip were excluded. Two reviewers independently completed inclusion assessment, data extraction, and risk of bias assessment for all studies identified. Results :  A total of 17 papers were evaluated: six randomized control trials and 11 observational studies. Studies varied widely on risk of bias, intervention used, and outcome measures reported. None of the studies had a low risk of bias. In terms of intervention approaches, seven studies evaluated linguistic approaches and 10 evaluated motor approaches. Outcomes measures did not support either approach over the other, and based on data reported it was difficult to ascertain which approach is more effective for children with cleft palate with or without cleft lip. Conclusions :  The review found little evidence to support any specific intervention. Key uncertainties need to be identified and adequately powered, methodologically rigorous studies conducted to provide a secure evidence base for speech-language therapy practice in children with cleft palate with or without cleft lip.

  • 2.
    Gaskin, Emma
    et al.
    England.
    Persson, Martin
    Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Williamson, Heidi
    England.
    Optimising appearance-related psychosocial care in European settings2015In: Journal of Aesthetic Nursing, ISSN 2050-3717, Vol. 4, no 8, p. 394-396Article in journal (Refereed)
  • 3.
    Hughes, C
    et al.
    England.
    Homer, J
    England.
    Bradley, P
    England.
    Nutting, C
    England.
    Ness, A
    England.
    Persson, Martin
    England.
    Jeffreys, M
    England.
    Waylen, A
    Leary, S
    England.
    Thomas, S
    England.
    An evaluation of current services available for people diagnosed with head and neck cancer in the UK (2009-2010).2012In: Clinical Oncology, ISSN 0936-6555, E-ISSN 1433-2981, Vol. 24, no 10, p. e187-92, article id S0936-6555(12)00193-8Article in journal (Refereed)
    Abstract [en]

    AIMS: To evaluate current care and service provision for people with head and neck cancer in the UK.

    MATERIALS AND METHODS: Self-report questionnaires for cancer networks, clinical leads of oncology units and leads for multidisciplinary teams (MDTs) were designed. These questionnaires were based on a previous survey. Questionnaires were sent out between 2009 and 2010.

    RESULTS: Questionnaires were received from all networks (n = 37), most oncology units (48 of 53) and most MDTs (51 of 63). Care for people with head and neck cancer is increasingly being provided by a centralised MDT. The membership of these teams varies; facilities available for team meetings are fit for purpose in most cases. MDTs are meeting frequently (weekly meetings in 96%) and discussing on average 18 cases at each meeting (95% confidence interval 15-21 cases). Most oncologists have access to all common anti-cancer drugs and most have access to all forms of radiotherapy. Intensity-modulated radiotherapy is not yet available in some oncology units (28%). A small number of units have only one oncologist (13%). Despite audit and research being part of the rationale for MDT working, regular discussion of morbidity and mortality is unusual (40%) and use of a database to record decisions is not universal. Only seven centres record decisions into the Data for Head and Neck Oncology database. Reported recruitment to studies is generally low (<2% of cases enrolled in studies in 62%).

    CONCLUSIONS: Head and neck cancer care is increasingly provided through a centralised MDT. Increased resources and further changes in practice are required to implement current National Health Service cancer policy. Teams need to improve recording of their decision-making, discuss morbidity and mortality and support recruitment to clinical studies.

  • 4.
    Ness, A. R.
    et al.
    England.
    Wills, A. K.
    England.
    Waylen, A.
    England.
    Al-Ghatam, R.
    England.
    Jones, T. E.
    England.
    Preston, R.
    England.
    Ireland, A. J.
    England.
    Persson, Martin
    England.
    Smallridge, J.
    England.
    Hall, A. J.
    England.
    Sell, D.
    England.
    Sandy, J. R.
    England.
    Centralization of cleft care in the UK. Part 6: a tale of two studies2015In: Orthod Craniofac Res, Vol. 18 Suppl 2, p. 56-62Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: We summarize and critique the methodology and outcomes from a substantial study which has investigated the impact of reconfigured cleft care in the United Kingdom (UK) 15 years after the UK government started to implement the centralization of cleft care in response to an earlier survey in 1998, the Clinical Standards Advisory Group (CSAG). SETTING AND SAMPLE POPULATION: A UK multicentre cross-sectional study of 5-year-olds born with non-syndromic unilateral cleft lip and palate. Data were collected from children born in the UK with a unilateral cleft lip and palate between 1 April 2005 and 31 March 2007. MATERIALS AND METHODS: We discuss and contextualize the outcomes from speech recordings, hearing, photographs, models, oral health and psychosocial factors in the current study. We refer to the earlier survey and other relevant studies. RESULTS: We present arguments for centralization of cleft care in healthcare systems, and we evidence this with improvements seen over a period of 15 years in the UK. We also make recommendations on how future audit and research may configure. CONCLUSIONS: Outcomes for children with a unilateral cleft lip and palate have improved after the introduction of a centralized multidisciplinary service, and other countries may benefit from this model. Predictors of early outcomes are still needed, and repeated cross-sectional studies, larger longitudinal studies and adequately powered trials are required to create a research-led evidence-based (centralized) service.

  • 5.
    Nicholls, W
    et al.
    Australia.
    Harper, C
    Australia.
    Robinson, S
    Australia.
    Persson, Martin
    England.
    Selvey, L
    Australia.
    Adult-specific life outcomes of cleft lip and palate in a Western Australian cohort2018In: Cleft Palate Craniofac J, Vol. 55, no 10, p. 1419-1429Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: People with a cleft of the lip and/or palate (CL/P) differ from their peers due to their facial appearance, hearing and speech difficulties, and the significant time spent attending appointments and recovering from surgical interventions. These differences may impact life outcomes including occupation, income, education, relationships, psychosocial health issues, and lifestyle choices. METHODOLOGY: A self-administered questionnaire was posted to 338 former and current patients of the Cleft Lip and Palate Unit of Princess Margaret Hospital (PMH), Perth, Western Australia. RESULTS: Completed questionnaires were returned by 158 former and current patients. In comparison to the Australian Bureau of Statistics, study participants attained equivalent highest education levels, full-time annual income levels, occupational categories, employment rates, and home ownership levels. They did not marry later and demonstrated positive health-related lifestyle behaviors. However independent living was significantly delayed, and the number of romantic relationships, marriages, and children was lower, with separation/divorce rates also being lower. A key finding was that 78% of participants self-reported that they experienced at least 1 psychosocial health issue and more than half experienced anxiety and/or depression. CONCLUSION: When comparing the sociological outcomes for the study participants, the psychosocial outcomes were the areas of most concern. Further investigation is required to determine the causes for the high self-reported rates of anxiety and/or depression found in this study.

  • 6.
    Nicholls, W.
    et al.
    Australia.
    Harper, C.
    Australia.
    Selvey, L. A.
    Australia.
    Robinson, S.
    Australia.
    Hartig, G.
    Australia.
    Persson, Martin
    England.
    Body esteem in a Western Australian cleft lip and/or palate cohort across 3 age groups2018In: Cleft Palate Craniofac J, Vol. 55, no 4, p. 487-498Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: To determine if patients with cleft lip and/or palate (CL/P) from a Western Australian (WA) cohort were more dissatisfied with their body esteem than a normative non-cleft cohort, and identify demographic variables that may have significant associations with body esteem. DESIGN: Questionnaire study using the Body-Esteem Scale (BES) and Cleft Research Questionnaire (CRQ). PARTICIPANTS: Self-selected participants from a Western Australian CL/P population across 3 age groups (n=359). MAIN OUTCOME MEASURES: The BES is comprised of 3 factors: BE-Appearance, BE-Weight and BE-Attribution. Study mean BES factor scores were compared to normative non-cleft scores. Regression analysis was used to determine significant associations within each age group between BES factor scores and CRQ variables of: gender, self-reported body weight category, cleft type and importance of facial appearance rating. RESULTS: Study mean BE-Attribution scores were significantly lower than the normative scores and significantly lower than the mean BE-Appearance and BE-Weight factor scores within the same age groups of this study. Having a cleft type of lip and palate, being overweight, and placing a high importance on facial appearance had significant negative associations with BES scores. Maintaining a normal body weight and placing a lower level of importance on facial appearance had significant positive associations. Gender had no significant associations. CONCLUSION: In this study, the attribution aspect of body esteem had a greater negative impact on patients than their appearance and body weight. This has important implications for clinical treatment and support of patients.

  • 7.
    Nicholls, W.
    et al.
    Australia.
    Persson, Martin
    England.
    Robinson, S.
    Australia.
    Selvey, L.
    Australia.
    Adult narratives of the psychosocial impact of cleft in a Western Australian cohort2019In: Cleft Palate Craniofac J, Vol. 56, no 3, p. 373-382Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Living with a cleft condition involves many years of multidisciplinary therapy, treatment, and surgical intervention. This complex process may have both physical and psychosocial long-term impacts. There is limited evidence of the psychosocial impact of cleft on individuals in Australia. AIM: To obtain an understanding of the adult patient perception of having a cleft and explore the impact of the condition on their lives. DESIGN: Qualitative methodologies at one case study site in Western Australia. Population of Interest: Adults with a cleft lip and/or palate (CL/P) who had received treatment at Princess Margaret Hospital, the only treatment center for cleft in Western Australia. METHODOLOGY: Individual in-depth semi-structured qualitative interviews were conducted and recorded and transcribed for analysis. RESULTS: Fifteen adults with a CL/P. Two main themes were identified: lived experience (with 3 subthemes: normality, support networks, and impacts in later life) and advice to others. The majority of participants reported social rejection and isolation, which occurred mostly at school and in some instances at home, but did not often last into adulthood. The greatest protective factor was the support of family and friends, which if missing during their childhood, was desired and appreciated in adulthood. CONCLUSION: Adults with CL/P may require psychosocial support from their cleft team including referral to clinicians in adult services. There is also the need for earlier psychological interventions and social programs to support those with appearance-related social difficulties.

  • 8.
    Nicholls, W.
    et al.
    Australien.
    Persson, Martin
    England.
    Robinson, S.
    Australien.
    Selvey, L.
    Australien.
    Adult narratives of the psychosocial impact of cleft in a Western Australian cohort2019In: Cleft Palate Craniofac J, Vol. 56, no 3, p. 373-382Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Living with a cleft condition involves many years of multidisciplinary therapy, treatment, and surgical intervention. This complex process may have both physical and psychosocial long-term impacts. There is limited evidence of the psychosocial impact of cleft on individuals in Australia. AIM: To obtain an understanding of the adult patient perception of having a cleft and explore the impact of the condition on their lives. DESIGN: Qualitative methodologies at one case study site in Western Australia. Population of Interest: Adults with a cleft lip and/or palate (CL/P) who had received treatment at Princess Margaret Hospital, the only treatment center for cleft in Western Australia. METHODOLOGY: Individual in-depth semi-structured qualitative interviews were conducted and recorded and transcribed for analysis. RESULTS: Fifteen adults with a CL/P. Two main themes were identified: lived experience (with 3 subthemes: normality, support networks, and impacts in later life) and advice to others. The majority of participants reported social rejection and isolation, which occurred mostly at school and in some instances at home, but did not often last into adulthood. The greatest protective factor was the support of family and friends, which if missing during their childhood, was desired and appreciated in adulthood. CONCLUSION: Adults with CL/P may require psychosocial support from their cleft team including referral to clinicians in adult services. There is also the need for earlier psychological interventions and social programs to support those with appearance-related social difficulties.

  • 9.
    Nicholls, W.
    et al.
    Australien.
    Selvey, L. A.
    Australien.
    Harper, C.
    Australien.
    Persson, Martin
    England.
    Robinson, S.
    Australien.
    The psychosocial impact of cleft in a Western Australian cohort across 3 age groups2019In: Cleft Palate Craniofac J, Vol. 56, no 2, p. 210-221Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Management of a cleft of the lip and/or palate (CL/P) involves a multidisciplinary team approach lasting from birth to potentially postskeletal maturity. This condition is complex, with both medical and psychosocial implications that may place individuals with a cleft at higher risk of developing psychosocial problems. METHODOLOGY: A self-administered questionnaire was completed by a sample from the Western Australian cleft population comprising 3 age groups: child (n = 100), adolescent (n = 101), and adult (n = 158). RESULTS: Public speaking, being photographed, special relationships, and participation in school were identified as the areas most impacted by having a cleft. Hearing and speech were reported to have a higher importance than facial and dental appearance. Participants rated support given to them by their parents as the most important, with high ratings for treatment providers. For teasing, the impact of cleft was significantly higher among participants with cleft lip and palate for both the adolescent and adult age groups. There was little significant difference by gender across the variables, which suggests that males are just as likely to require support as females. CONCLUSION: The impact of a cleft across multiple psychosocial domains needs to be recognized and addressed as part of craniofacial team care across age groups.

  • 10.
    Nicholls, W.
    et al.
    Australien.
    Selvey, L. A.
    Australien.
    Harper, C.
    Australien.
    Persson, Martin
    England.
    Robinson, S.
    Australien.
    The psychosocial impact of cleft in a Western Australian cohort across 3 age groups2019In: Cleft Palate Craniofac J, Vol. 56, no 2, p. 210-221Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Management of a cleft of the lip and/or palate (CL/P) involves a multidisciplinary team approach lasting from birth to potentially postskeletal maturity. This condition is complex, with both medical and psychosocial implications that may place individuals with a cleft at higher risk of developing psychosocial problems. METHODOLOGY: A self-administered questionnaire was completed by a sample from the Western Australian cleft population comprising 3 age groups: child (n = 100), adolescent (n = 101), and adult (n = 158). RESULTS: Public speaking, being photographed, special relationships, and participation in school were identified as the areas most impacted by having a cleft. Hearing and speech were reported to have a higher importance than facial and dental appearance. Participants rated support given to them by their parents as the most important, with high ratings for treatment providers. For teasing, the impact of cleft was significantly higher among participants with cleft lip and palate for both the adolescent and adult age groups. There was little significant difference by gender across the variables, which suggests that males are just as likely to require support as females. CONCLUSION: The impact of a cleft across multiple psychosocial domains needs to be recognized and addressed as part of craniofacial team care across age groups.

  • 11.
    Nicholls, Wendy
    et al.
    Australia.
    Harper, Craig
    Australia.
    Robinson, Suzanne
    Australia.
    Persson, Martin
    England.
    Selvey, Linda
    Australia.
    Adult-Specific life outcomes of cleft lip and palate in a Western Australian cohort2018In: The Cleft Palate-Craniofacial Journal, ISSN 1055-6656, E-ISSN 1545-1569, Vol. 55, no 10, p. 1419-1429Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: People with a cleft of the lip and/or palate (CL/P) differ from their peers due to their facial appearance, hearing and speech difficulties, and the significant time spent attending appointments and recovering from surgical interventions. These differences may impact life outcomes including occupation, income, education, relationships, psychosocial health issues, and lifestyle choices.

    METHODOLOGY: A self-administered questionnaire was posted to 338 former and current patients of the Cleft Lip and Palate Unit of Princess Margaret Hospital (PMH), Perth, Western Australia.

    RESULTS: Completed questionnaires were returned by 158 former and current patients. In comparison to the Australian Bureau of Statistics, study participants attained equivalent highest education levels, full-time annual income levels, occupational categories, employment rates, and home ownership levels. They did not marry later and demonstrated positive health-related lifestyle behaviors. However independent living was significantly delayed, and the number of romantic relationships, marriages, and children was lower, with separation/divorce rates also being lower. A key finding was that 78% of participants self-reported that they experienced at least 1 psychosocial health issue and more than half experienced anxiety and/or depression.

    CONCLUSION: When comparing the sociological outcomes for the study participants, the psychosocial outcomes were the areas of most concern. Further investigation is required to determine the causes for the high self-reported rates of anxiety and/or depression found in this study.

  • 12.
    Nicholls, Wendy
    et al.
    Australien.
    Harper, Craig
    Australien.
    Tural, Serpil
    Turkiet.
    Maulina, Ieva
    Lettland.
    Zepa, Inta
    Lettland.
    Radojicic, Julija
    Serbien.
    Peic, Zoran
    Serbien.
    Velikova, Radost
    Bulgarien.
    Saygi, Evrim
    Turkiet.
    Persson, Martin
    England.
    Healthcare providers' psychosocial support for patients with a cleft: Europe and Australia2017In: Journal of Cleft Lip Palate and Craniofacial Anomalies, Vol. 4, no 3, p. 105-112Article in journal (Refereed)
    Abstract [en]

    <b>Background:</b> The long-term care of patients with a visible appearance difference may involve many years of multidisciplinary treatment. In addition to providing the physical treatment component, support for the emotional and psychosocial implications must also be considered. The primary objective of this project was to survey healthcare professionals (HCPs) from each of the participating countries to ascertain their level of awareness and understanding of the issues facing those with visible differences, their level of confidence in supporting those patients, and their current and required level of training. Secondary objectives were to gauge the perceived importance of appearance and the psychosocial impact for individuals with visible differences. <b>Methods</b>: Questionnaires were completed by multidisciplinary HCPs in four European countries and Australia. <b>Results</b>: The results for all countries (110 participants) indicate that the majority of HCPs do not feel confident in dealing with the psychosocial needs of people with an appearance disfigurement. <b>Conclusion</b>: All countries identified and supported the need for training of multidisciplinary HCPs to be able to identify and support the psychosocial problems experienced by individuals and families. A collaborative future training program aimed at providing effective psychosocial support and was identified to be the most efficient mode to meet the training requirement. Provision of training will offer the knowledge base for effective psychosocial support and address the unintentional marginalization and social exclusion that may occur by untrained HCPs.

  • 13.
    Nicholls, Wendy
    et al.
    Australia.
    Persson, Martin
    England.
    Robinson, Suzanne
    Australia.
    Selvey, Linda A
    Australia.
    Psychosocial impacts of cleft: a review of the literature2015In: AASCIT journal of psychology, ISSN 2472-9787, Vol. 1, no 2, p. 14-32Article in journal (Refereed)
  • 14.
    Nicholls, Wendy
    et al.
    Australia.
    Selvey, Linda A
    Australia.
    Harper, Craig
    Australia.
    Persson, Martin
    England.
    Robinson, Suzanne
    Australia.
    The psychosocial impact of cleft in a Western Australian cohort across 3 age groups2019In: The Cleft Palate-Craniofacial Journal, ISSN 1055-6656, E-ISSN 1545-1569, Vol. 56, no 2, p. 210-221Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:: Management of a cleft of the lip and/or palate (CL/P) involves a multidisciplinary team approach lasting from birth to potentially postskeletal maturity. This condition is complex, with both medical and psychosocial implications that may place individuals with a cleft at higher risk of developing psychosocial problems.

    METHODOLOGY:: A self-administered questionnaire was completed by a sample from the Western Australian cleft population comprising 3 age groups: child (n = 100), adolescent (n = 101), and adult (n = 158).

    RESULTS:: Public speaking, being photographed, special relationships, and participation in school were identified as the areas most impacted by having a cleft. Hearing and speech were reported to have a higher importance than facial and dental appearance. Participants rated support given to them by their parents as the most important, with high ratings for treatment providers. For teasing, the impact of cleft was significantly higher among participants with cleft lip and palate for both the adolescent and adult age groups. There was little significant difference by gender across the variables, which suggests that males are just as likely to require support as females.

    CONCLUSION:: The impact of a cleft across multiple psychosocial domains needs to be recognized and addressed as part of craniofacial team care across age groups.

  • 15.
    Norman, A.
    et al.
    England.
    Persson, Martin
    England.
    Stock, N.
    England.
    Rumsey, N.
    England.
    Sandy, J.
    England.
    Waylen, A.
    England.
    Edwards, Z.
    England.
    Hammond, V.
    England.
    Partridge, L.
    England.
    Ness, A.
    England.
    The effectiveness of psychosocial intervention for individuals with cleft lip and/or palate2015In: Cleft Palate Craniofac J, Vol. 52, no 3, p. 301-10Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The aim of this review was to assess the effectiveness of different psychological interventions for children and adults with cleft lip and/or palate and their parents. DESIGN: We searched six databases including MEDLINE and EMBASE to June 2013 and checked bibliographies. We included research that evaluated any psychological intervention in studies in which at least 90% of the participants had cleft lip and/or palate or were parents of those with cleft lip and/or palate. Studies containing less than 90% were excluded unless they reported results separately for those with cleft lip and/or palate, or raw data were available upon request from the authors. Inclusion assessment, data extraction, and risk of bias assessment were carried out independently by two reviewers. RESULTS: Seven studies were identified as inclusions, with only two studies being included in the full data analysis (one of which failed to meet the full inclusion criteria). The five remaining studies were included only in a narrative synthesis because data were available for people or parents of those with cleft lip and/or palate only. This highlights a distinct dearth of research into psychological intervention within the field of cleft lip and/or palate. CONCLUSIONS: The review found no evidence to support any specific intervention. Key uncertainties need to be identified and addressed. Adequately powered, methodologically rigorous randomized controlled trials are needed to provide a secure evidence base for psychological intervention techniques in participants with cleft lip and/or palate and their parents.

  • 16.
    Persson, Martin
    England.
    Using retrospective approaches in the study of disfigurement2012In: Oxford handbook of the psychology of appearance / [ed] Rumsey, N and Harcourt, D., Oxford University Press, 2012Chapter in book (Other academic)
  • 17.
    Persson, Martin
    et al.
    Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Anastassov, Youri
    Khater, Regina
    Spataru, Radu
    Nobile, Francesca
    Skuladottir, Hildur
    Nilsen, Thomas
    Rumsey, Nichola
    Cutting edge training: upskilling health professionals in psychological care for patients undergoing appearance-altering procedures2018In: Journal of Aesthetic Nursing, Vol. 7, no 10, p. 522-529Article in journal (Refereed)
    Abstract [en]

    The number of patients undergoing appearance-altering procedures is increasing, whether they do so as treatment for an existing condition or as an elected cosmetic procedure. Consequently, many patients experience difficulties in coming to terms with changes to their looks, or may have unrealistic expectations of the outcomes and impacts of the treatment. Despite clear evidence that psychological factors play a significant part in many aspects of cosmetic surgery, patients often have very limited or even non-existent access to psychological input as part of their treatment. Therefore, a European Union-funded consortium initiated a survey of 66 healthcare professionals (HCPs) working in the medical aesthetics sector from Bulgaria, Italy, Norway and Romania with the aim of ascertaining their views on the need to enhance psychosocial care, the need for appropriate training and the willingness of HCPs in this sector to undertake this training if available. The results show that there is a pressing need to develop high quality, evidence-based, relevant vocational educational training for those specialising in the care of patients undergoing appearance-related surgery and associated treatments.

  • 18.
    Persson, Martin
    et al.
    Lunds universitet.
    Aniansson, Gustaf
    Becker, Magnus
    Svensson, Henry
    Self-concept and introversion in adolescents with cleft lip and palate2002In: Scandinavian Journal of Plastic and Reconstructive Surgery and Hand Surgery, ISSN 0284-4311, E-ISSN 1651-2073, Vol. 36, no 1, p. 24-7Article in journal (Refereed)
    Abstract [en]

    The purpose of this study was to investigate if adolescents with cleft lip, or palate, or both (CLP), have an altered self-concept, and to assess their degree of introversion, compared with a control group. The CLP group consisted of 55 adolescents (aged 17-20 years) and the control group consisted of 31 adolescents (16-19 years). The Tennessee Self Concept Scale (TSCS) was used to measure the subjects' self-concept, while the Eysenck Personality Questionnaire Inventory (EPQ-I) was used to measure introversion. The results indicate that those with CLP have a normal or even a high self-concept, and no signs of introversion.

  • 19.
    Persson, Martin
    et al.
    Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Becker, M
    Lund university.
    Conrad, A L
    USA.
    Svensson, H
    Lund university.
    Female and male differences in academic achievement in individuals with cleft: a population-based register study2018In: Cleft Palate Craniofac J, Vol. 55, no 2, p. 196-203Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The focus of this study was to determine if there is any significant difference in academic achievement for girls and boys with a cleft compared to the general population of Swedish students at graduation from compulsory school. DESIGN: A retrospective population-based study using data obtained from the Swedish Medical Birth Register that was linked to the Swedish School-Grade Register. PARTICIPANTS: Two hundred seventy girls and 241 boys with cleft palate (CP), 222 girls and 429 boys with cleft lip (CL), and 299 girls and 531 boys with cleft lip and palate (CLP) were compared with the compulsory school population comprising 609,397 girls and 640,007 boys. MAIN OUTCOME MEASURES: (1) Odds of receiving the lowest grade and reduced odds in receiving high grades in Mathematics, English, and Swedish. (2) grade point average (GPA). RESULTS: In all 3 subject grades, for boys with cleft there was no difference when compared to the male population. Girls with cleft were similar to their peers with a few exceptions. Girls with CLP had lower Math grades, and girls with CP had lower Math, English, and Swedish grades. Girls with CP and CLP achieved a significantly lower GPA in comparison to the female population and boys with CP and CL achieved lower GPAs in comparison to the male population. CONCLUSIONS: This study indicates that educational outcomes for girls with cleft are more negatively affected than for boys with cleft.

  • 20.
    Persson, Martin
    et al.
    England.
    Becker, M.
    Svensson, H.
    To the editor2014In: Cleft Palate Craniofac J, Vol. 51, no 3, p. 367-8Article in journal (Refereed)
  • 21.
    Persson, Martin
    et al.
    Kristianstad University, School of Health and Society, Avdelningen för Sjuksköterskeutbildningarna. Skåne University Hospital.
    Becker, Magnus
    Lund University.
    Conrad, Amy L.
    USA.
    Svensson, Henry
    Lund University.
    Female and male differences in academic achievement in individuals with cleft: a population-based register study2018In: The Cleft Palate-Craniofacial Journal, ISSN 1055-6656, E-ISSN 1545-1569, Vol. 55, no 2, p. 196-203Article in journal (Refereed)
    Abstract [en]

    Objective: The focus of this study was to determine if there is any significant difference in academic achievement for girls and boyswith a cleft compared to the general population of Swedish students at graduation from compulsory school.

    Design: A retrospective population-based study using data obtained from the Swedish Medical Birth Register that was linked to the Swedish School–Grade Register.Participants: Two hundred seventy girls and 241 boys with cleft palate (CP), 222 girls and 429 boys with cleft lip (CL), and 299 girls and 531 boys with cleft lip and palate (CLP) were compared with the compulsory school population comprising 609,397 girls and 640,007 boys.

    Main Outcome Measures: (1) Odds of receiving the lowest grade and reduced odds in receiving high grades in Mathematics, English, and Swedish. (2) grade point average (GPA).

    Results: In all 3 subject grades, for boys with cleft there was no difference when compared to the male population. Girls with cleft were similar to their peers with a few exceptions. Girls with CLP had lower Math grades, and girls with CP had lower Math, English, and Swedish grades. Girls with CP and CLP achieved a significantly lower GPA in comparison to the female population and boys with CP and CL achieved lower GPAs in comparison to the male population.

    Conclusions: This study indicates that educational outcomes for girls with cleft are more negatively affected than for boys with cleft.

  • 22.
    Persson, Martin
    et al.
    England.
    Becker, Magnus
    Svensson, Henry
    Academic achievement in individuals with cleft: a population-based register study2012In: The Cleft Palate-Craniofacial Journal, ISSN 1055-6656, E-ISSN 1545-1569, Vol. 49, no 2, p. 153-9Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The focus of this study was to determine whether there were any significant differences in academic achievement between students with a cleft and the general population of Swedish students at the typical time of graduation from compulsory school (usually 16 years of age).

    DESIGN: A retrospective population-based study. Data were obtained from the Swedish Medical Birth Register for the years 1973 through 1986 and were linked to the Swedish School-Grade Register.

    PARTICIPANTS: A total of 511 individuals with cleft palate (CP), 651 individuals with cleft lip (CL), and 830 individuals with cleft lip and palate (CLP) were compared with a control group consisting of 1,249,404 individuals.

    MAIN OUTCOME MEASURES: (1) Not receiving school leaving certificate; (2) odds of receiving lowest grade and reduced odds of receiving a high grade in the following subjects: (a) Mathematics, (b) English, (c) Swedish, (d) Physical Education, and (e) grade point average (GPA).

    RESULTS: The group with cleft had higher odds of not receiving leaving certificates in comparison with the general population. They also had higher odds of receiving the lowest grade and/or reduced odds of receiving a high grade in the subjects analyzed together, with strong evidence of lower GPA in comparison with the general population. Individuals with CP were affected the most, followed by individuals with CLP; least affected were individuals with CL.

    CONCLUSION: This study clearly indicates that adolescents with cleft lip and/or palate in Sweden experience significant deficits in their educational achievements in compulsory school.

  • 23.
    Persson, Martin
    et al.
    Malmö university hospital.
    Becker, Magnus
    Malmö university hospital.
    Svensson, Henry
    Malmö university hospital.
    General intellectual capacity of young men with cleft lip with or without cleft palate and cleft palate alone2008In: Scandinavian Journal of Plastic and Reconstructive Surgery and Hand Surgery, ISSN 0284-4311, E-ISSN 1651-2073, Vol. 42, no 1, p. 14-6Article in journal (Refereed)
    Abstract [en]

    We report on the general intellectual capacity of men around 17-19 years of age and with cleft lip either with or without cleft palate (CLP) or cleft palate alone. Data were obtained from the Swedish National Service enrollment register for the years 1991-1997, about 335 individuals with CLP and 88 with cleft palate alone, who were compared with a control group consisting of 272 879 people. Those with CLP showed no significant differences compared with the control group. The group with cleft palate alone had significantly lower general intellectual scores than the control group.

  • 24.
    Persson, Martin
    et al.
    Malmö university hospital.
    Becker, Magnus
    Svensson, Henry
    Physical characteristics of young men with cleft lip, with or without cleft palate, and cleft palate only2007In: Scandinavian Journal of Plastic and Reconstructive Surgery and Hand Surgery, ISSN 0284-4311, E-ISSN 1651-2073, Vol. 41, no 1, p. 6-9Article in journal (Refereed)
    Abstract [en]

    We report the weight, stature, body mass index (BMI), and muscular strength of men about 19 years old who have cleft lip, either with or without cleft palate (CLP), or cleft palate only (CP). Data were obtained from the Swedish National Service enrolment register for the years 1991 -97, and concerned 335 men with CLP and 88 with CP, who were compared with a control group of 272 879 men. The data showed that those with CLP and CP were significantly lighter than controls. Their stature in the CLP group was similar to that in controls, but those with CP significantly shorter. These findings imply that men with CLP had a significantly lower BMI whereas men with CP had a similar BMI compared with controls. Those with CLP did not differ as regards to muscular strength, but those with CP were significantly weaker than controls.

  • 25.
    Persson, Martin
    et al.
    England.
    Sandy, J.
    England.
    Kilpatrick, N.
    England.
    Becker, M.
    England.
    Svensson, H.
    England.
    Educational achievements in Pierre Robin Sequence2013In: J Plast Surg Hand Surg, Vol. 47, no 1, p. 36-9Article in journal (Refereed)
    Abstract [en]

    The aim of this retrospective population-based study was to determine if there is any significant difference in academic achievement between students with a Pierre Robin Sequence (PRS) compared with the general population of Swedish students at the typical time of graduation from compulsory school (usually at 16 years of age). The data were obtained from the Swedish Medical Birth Register for the years 1973-1986 and linked to the Swedish School-Grade Register, which generated a data set of 68 individuals with PRS that were compared with a control group consisting of 1,249,404 individuals. The following outcomes were measured: not receiving a school leaving certificate; their odds of receiving lowest grade; and reduced odds of receiving high grade in the following subjects: mathematics; English; Swedish; and physical education, and their grade point average. For the control group 2.74% did not receive their leaving certificate, while for the individuals with PRS 9.68% (OR = 4.00; 95% CI = 1.81-8.86) did not receive their leaving certificate. There were no differences between the groups in mathematics, English, and Swedish, while, in physical education, individuals with PRS had significantly reduced odds of receiving a high grade in the relative grading system. Individuals with PRS had a significantly lower grade point average: 3.00 +/- 0.09 in comparison to the control group: 3.23 +/- 0.002, p = 0.002. This study indicates that individuals with PRS experience significant difficulties in their educational achievements in compulsory school in Sweden.

  • 26.
    Persson, Martin
    et al.
    England.
    Sandy, J R
    England.
    Waylen, A
    England.
    Wills, A K
    England.
    Al-Ghatam, R
    England.
    Ireland, A J
    England.
    Hall, A J
    England.
    Hollingworth, W
    England.
    Jones, T
    England.
    Peters, T J
    England.
    Preston, R
    England.
    Sell, D
    England.
    Smallridge, J
    England.
    Worthington, H
    England.
    Ness, A R
    England.
    A cross-sectional survey of 5-year-old children with non-syndromic unilateral cleft lip and palate: the Cleft Care UK study. Part 12015In: Orthod Craniofac Res, Vol. 18 Suppl 2, p. 1-13Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: We describe the methodology for a major study investigating the impact of reconfigured cleft care in the United Kingdom (UK) 15 years after an initial survey, detailed in the Clinical Standards Advisory Group (CSAG) report in 1998, had informed government recommendations on centralization. SETTING AND SAMPLE POPULATION: This is a UK multicentre cross-sectional study of 5-year-olds born with non-syndromic unilateral cleft lip and palate. Children born between 1 April 2005 and 31 March 2007 were seen in cleft centre audit clinics. MATERIALS AND METHODS: Consent was obtained for the collection of routine clinical measures (speech recordings, hearing, photographs, models, oral health, psychosocial factors) and anthropometric measures (height, weight, head circumference). The methodology for each clinical measure followed those of the earlier survey as closely as possible. RESULTS: We identified 359 eligible children and recruited 268 (74.7%) to the study. Eleven separate records for each child were collected at the audit clinics. In total, 2666 (90.4%) were collected from a potential 2948 records. The response rates for the self-reported questionnaires, completed at home, were 52.6% for the Health and Lifestyle Questionnaire and 52.2% for the Satisfaction with Service Questionnaire. CONCLUSIONS: Response rates and measures were similar to those achieved in the previous survey. There are practical, administrative and methodological challenges in repeating cross-sectional surveys 15 years apart and producing comparable data.

  • 27.
    Sandy, J
    et al.
    England.
    Kilpatrick, N
    England.
    Persson, Martin
    England.
    Bessel, A
    England.
    Waylen, A
    England.
    Ness, A
    England.
    Ireland, A
    England.
    Why are multi-centre clinical observational studies still so difficult to run?2011In: British Dental Journal, ISSN 0007-0610, E-ISSN 1476-5373, Vol. 211, no 2, p. 59-61Article in journal (Refereed)
    Abstract [en]

    Despite the introduction of IRAS, obtaining R&D approvals for multicentre studies is a major rate limiting step. Our experience with cleft research demonstrates that this approvals process must be drastically and rapidly improved if we wish to continue attract clinical research to the UK.

  • 28.
    Sandy, J
    et al.
    England.
    Rumsey, N
    England.
    Persson, Martin
    England.
    Waylen, A
    England.
    Kilpatrick, N
    England.
    Ireland, T
    England.
    Ness, A
    England.
    Using service rationalisation to build a research network: lessons from the centralisation of UK services for children with cleft lip and palate2012In: British Dental Journal, ISSN 0007-0610, E-ISSN 1476-5373, Vol. 212, no 11, p. 553-5Article in journal (Refereed)
    Abstract [en]

    In the UK around a thousand children are born annually with a cleft lip and/or palate that requires treatment. In the last decade services have been centralised in the UK reducing the 57 centres operating on these children in 1998, down to 11 centres or managed clinical networks in 2011. While the rationale for centralisation was to improve the standard of care (and in so doing the outcome) for children born with cleft lip and/or palate, research was central to this process. We illustrate how research informed and shaped this service rationalisation and how it facilitated the emergence of a research culture within the newly configured teams. We also describe how these changes in service provision were linked to the development of a national research strategy and to the identification of the resources necessary to support this strategy.

  • 29.
    Scott, J. K.
    et al.
    England.
    Leary, S. D.
    England.
    Ness, A. R.
    England.
    Sandy, J. R.
    England.
    Persson, Martin
    England.
    Kilpatrick, N.
    England.
    Waylen, A. E.
    England.
    Centralization of services for children born with orofacial clefts in the United kingdom: a cross-sectional survey2014In: Cleft Palate Craniofac J, Vol. 51, no 5, p. e102-9Article in journal (Refereed)
    Abstract [en]

    Objective : To examine current provision of cleft lip and/or palate services in the U.K. and compliance with recommendations made by the Clinical Standards Advisory Group (CSAG) in 1998. Design : Cross-sectional questionnaire survey. Setting : All 11 services within the U.K. providing care for children born with a cleft lip and palate. Participants : Members from each healthcare specialty in each U.K. cleft team. Interventions : Self-administered postal questionnaires enquired about the provision of cleft services. Data were collected about the overall cleft service, team coordination, hearing, orthodontics, pediatric dentistry, primary cleft surgery, psychology, restorative dentistry, secondary surgery, specialist cleft nursing, and speech and language therapy. Results : Questionnaires were returned from members of 130/150 cleft teams (87%) and these showed that U.K. cleft services have been restructured to 11 centralized services with 17 primary operative sites and 61 peripheral sites. All services provide care through a multidisciplinary (MDT) model, but the composition of each team varies. Primary cleft surgery and orthodontics were the only specialties that were represented in all cleft teams. Specialties may be represented in a team but their attendance at MDT clinics is variable. Only one team met all of the CSAG recommendations. Conclusions : Our survey shows that cleft services have centralized over the last 10 years, and an MDT model of care has been adopted. Further research is needed to show how this has influenced outcomes and to see whether some models of centralized care are associated with better outcomes.

  • 30.
    Scott, J. K.
    et al.
    England.
    Leary, S. D.
    England.
    Ness, A. R.
    England.
    Sandy, J. R.
    England.
    Persson, Martin
    Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Kilpatrick, N.
    England.
    Waylen, A. E.
    England.
    Perceptions of team members working in cleft services in the United Kingdom: a pilot study2015In: Cleft Palate Craniofac J, Vol. 52, no 1, p. e1-7Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Cleft care provision in the United Kingdom has been centralized over the past 15 years to improve outcomes for children born with cleft lip and palate. However, to date, there have been no investigations to examine how well these multidisciplinary teams are performing. METHODS: In this pilot study, a cross-sectional questionnaire surveyed members of all health care specialties working to provide cleft care in 11 services across the United Kingdom. Team members were asked to complete the Team Work Assessment (TWA) to investigate perceptions of team working in cleft services. The TWA comprises 55 items measuring seven constructs: team foundation, function, performance and skills, team climate and atmosphere, team leadership, and team identity; individual constructs were also aggregated to provide an overall TWA score. Items were measured using five-point Likert-type scales and were converted into percentage agreement for analysis. RESULTS: Responses were received from members of every cleft team. Ninety-nine of 138 cleft team questionnaires (71.7%) were returned and analyzed. The median (interquartile range) percentage of maximum possible score across teams was 75.5% (70.8, 88.2) for the sum of all items. Team performance and team identity were viewed most positively, with 82.0% (75.0, 88.2) and 88.4% (82.2, 91.4), respectively. Team foundation and leadership were viewed least positively with 79.0% (72.6, 84.6) and 76.6% (70.6, 85.4), respectively. CONCLUSIONS: Cleft team members perceive that their teams work well, but there are variations in response according to construct.

  • 31.
    Smallridge, J.
    et al.
    England.
    Hall, A. J.
    England.
    Chorbachi, R.
    England.
    Parfect, V.
    England.
    Persson, Martin
    England.
    Ireland, A. J.
    England.
    Wills, A. K.
    England.
    Ness, A. R.
    England.
    Sandy, J. R.
    England.
    Functional outcomes in the Cleft Care UK study--Part 3: oral health and audiology2015In: Orthod Craniofac Res, Vol. 18 Suppl 2, p. 25-35Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: To compare oral health and hearing outcomes from the Clinical Standards Advisory Group (CSAG, 1998) and the Cleft Care UK (CCUK, 2013) studies. SETTING AND SAMPLE POPULATION: Two UK-based cross-sectional studies of 5-year-olds born with non-syndromic unilateral cleft lip and palate undertaken 15 years apart. CSAG children were treated in a dispersed model of care with low-volume operators. CCUK children were treated in a centralized, high volume operator system. MATERIALS AND METHODS: Oral health data were collected using a standardized proforma. Hearing was assessed using pure tone audiometry and middle ear status by otoscopy and tympanometry. ENT and hearing history were collected from medical notes and parental report. RESULTS: Oral health was assessed in 264 of 268 children (98.5%). The mean dmft was 2.3, 48% were caries free, and 44.7% had untreated caries. There was no evidence this had changed since the CSAG survey. Oral hygiene was generally good, 96% were enrolled with a dentist. Audiology was assessed in 227 of 268 children (84.7%). Forty-three per cent of children received at least one set of grommets--a 17.6% reduction compared to CSAG. Abnormal middle ear status was apparent in 50.7% of children. There was no change in hearing levels, but more children with hearing loss were managed with hearing aids. CONCLUSIONS: Outcomes for dental caries and hearing were no better in CCUK than in CSAG, although there was reduced use of grommets and increased use of hearing aids. The service specifications and recommendations should be scrutinized and implemented.

  • 32.
    Stiernman, Mia
    et al.
    Lund University.
    Maulina, Leva
    Latvia.
    Inta, Zepa
    Latvia.
    Jagomägi, Triin
    Estonia.
    Tanaskovic, Nenad
    Bosnia and Herzegovina .
    Velikova, Radost
    Bulgaria.
    Anastassov, Youri
    Bulgaria.
    Radojićić, Julija
    Serbia.
    Pesic, Zoran
    Serbia.
    Trifunović, Branislav
    Serbia.
    Drevensek, Martina
    Slovenia.
    Spataru, Radu
    Romania.
    Boljevic, Tanja
    Montenegro.
    Dimovska, Radmila
    Republic of Macedonia.
    Naumovski, Slave
    Republic of Macedonia .
    Rumsey, Nichola
    England.
    Zucchelli, Fabio
    England.
    Sharratt, Nicholas
    England.
    Argyrides, Mario
    Cyprus.
    Klintö, Kristina
    Lund University.
    Becker, Magnus
    Lund University.
    Persson, Martin
    Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap. Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education.
    Translation and pilot study of the cleft hearing appearance and speech questionnaire (CHASQ)2019In: European journal of plastic surgergy, ISSN 0930-343XArticle in journal (Refereed)
    Abstract [en]

    Background

    There has been a lack of a standardized protocol for collection of patient reported outcomes (PRO) and detection of and indication for psychological treatment in cleft care. The objectives of this paper was to translate Cleft Hearing Appearance and Speech Questionnaire (CHASQ) into eight European languages, to investigate whether levels of PRO in patients with cleft lip and/or cleft palate (CL/P) were comparable across countries and to investigate clinician experience of the instrument.

    Methods

    The PRO measure—CHASQ—was translated into Bulgarian, Estonian, Greek, Latvian, Macedonian, Romanian, Serbian and Swedish and implemented with patients in the respective countries. A focus group discussion was conducted to investigate health care professional experience on the use of CHASQ in their clinics. Data was analysed in accordance with the principles of thematic analysis.

    Results

    Analysis showed statistically significant differences between countries and groups of diagnosis in CHASQ scores. CHASQ helped clinicians gain patient information and informed on treatment decisions, broadened the clinicians’ role as caregivers and was perceived as short and easy to use. Limited time and resources in clinics were limitations in implementing the instrument.

    Conclusions

    Translation and utilization of CHASQ facilitated international comparison and cooperation. Linguistically, valid replicas of CHASQ are now available in many European languages. Results from this study show that CHASQ may be used for collection of PRO on patient satisfaction and to spark conversation between clinicians, patients and families.

    Level of evidence: Not rateable.

  • 33.
    Stiernman, Mia
    et al.
    Lund University.
    Österlind, Kerstin
    Skåne University Hospital.
    Becker, Magnus
    Lund University.
    Persson, Martin
    Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap. Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education.
    Parental and health care professional views on psychosocial and educational outcomes in patients with cleft lip and/or cleft palate2019In: European journal of plastic surgery, ISSN 0930-343X, E-ISSN 1435-0130, Vol. 42, no 4, p. 325-336Article in journal (Refereed)
    Abstract [en]

    Background

    Earlier research has investigated psychosocial and educational issues in populations of patients with cleft identifying several areas of concern. The objective of this study was to investigate current beliefs and knowledge about psychosocial and educational issues in parents and health care professionals (HCP) of children with cleft lip and/or palate (CL/P).

    Method

    Parents were interviewed concerning the view of society on people with visible differences, their child’s social life, educational progress, and information regarding psychosocial care. Interviews with HCPs concerned characteristics related with educational achievement, behavior, and social relationships. Fifteen parents of children 9 to 13 years of age with CL/P and 10 HCPs and were interviewed. Data from interviews was analyzed with thematic analysis.

    Results

    Eight children were reported to have emotional issues related to their cleft. Eleven parents, however, did not perceive that their child was treated differently in society. HCPs expressed concerns regarding for example coping with being different, low self-esteem, shyness, disadvantage on first impression, and acceptance of themselves. A majority of the HCPs did not think patient cognition and behavioral or physical development were specifically affected.

    Conclusions

    The results revealed that parent experience and views were diverse—from no specific problems related to the cleft, to both emotional and educational issues. The beliefs and level of knowledge in HCPs also varied. All HCPs, however, wished for more information and training regarding psychosocial issues.

  • 34.
    Stock, N. M.
    et al.
    England.
    Humphries, K.
    England.
    Pourcain, B. S.
    England.
    Bailey, M.
    England.
    Persson, Martin
    England.
    Ho, K. M.
    England.
    Ring, S.
    England.
    Marsh, C.
    England.
    Albery, L.
    England.
    Rumsey, N.
    England.
    Sandy, J.
    England.
    Opportunities and challenges in establishing a cohort study: an example from cleft lip/palate research in the United Kingdom2016In: Cleft Palate Craniofac J, Vol. 53, no 3, p. 317-25Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Cleft lip and/or palate (CL/P) is one of the most common birth conditions in the world, but little is known about its causes. Professional opinion remains divided as to which treatments may be the most beneficial for patients with CL/P, and the factors that contribute to psychological adjustment are poorly understood. The use of different methodological approaches and tools plays a key role in hampering efforts to address discrepancies within the evidence base. A new UK-wide program of research, The Cleft Collective, was established to combat many of these methodological challenges and to address some of the key research questions important to all CL/P stakeholders. OBJECTIVE: To describe the establishment of CL/P cohort studies in the United Kingdom and to consider the many opportunities this resource will generate. RESULTS: To date, protocols have been developed and implemented within most UK cleft teams. Biological samples, environmental information, and data pertaining to parental psychological well-being and child development are being collected successfully. Recruitment is currently on track to meet the ambitious target of approximately 9800 individuals from just more than 3000 families. CONCLUSIONS: The Cleft Collective cohort studies represent a significant step forward for research in the field of CL/P. The data collected will form a comprehensive resource of information about individuals with CL/P and their families. This resource will provide the basis for many future projects and collaborations, both in the United Kingdom and around the world.

  • 35.
    Waylen, A.
    et al.
    England.
    Ness, A. R.
    England.
    Wills, A. K.
    England.
    Persson, Martin
    England.
    Rumsey, N.
    England.
    Sandy, J. R.
    England.
    Cleft Care UK study. Part 5: child psychosocial outcomes and satisfaction with cleft services2015In: Orthod Craniofac Res, Vol. 18 Suppl 2, p. 47-55Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: To describe the impact of cleft service centralization on parental perceptions of child outcomes and satisfaction with care from the Cleft Care UK (CCUK) study and compare them to the Clinical Standards Advisory Group (CSAG) study that took place 15 years earlier. SETTING AND SAMPLE POPULATION: A subgroup of respondents from a UK multicentre cross-sectional study (CCUK) of 5-year-olds born with non-syndromic unilateral cleft lip and palate. MATERIALS AND METHODS: Data on parents' perceptions of child self-confidence and their satisfaction with treatment outcomes and service provision were collected via self-report questionnaires. Data were compared with findings from the 1998 CSAG study. RESULTS: Fewer parents in the CCUK study perceived their children as having poor self-confidence than in the 1998 CSAG study (8 and 19%, respectively). At least 81% of parents report satisfaction with the child's facial features after surgery and 98% report being satisfied with the care received. These results are similar to those reported in 1998. There is no evidence of an adverse impact on families' ability to attend appointments at the cleft clinic following centralization. Levels of reported problems (around 30%) with attendance were similar to those reported by CSAG. CONCLUSION: Centralization of cleft services appears to have improved parental perceptions of some child outcomes but has made little difference to already high levels of parental satisfaction with cleft care services. Centralization is not associated with an increase in the proportion of families who find it difficult to attend appointments.

  • 36.
    Williamson, Heidi
    et al.
    England.
    Antonelli, Paolo
    Italien.
    Bringsén, Åsa
    Kristianstad University, Faculty of Health Science, Avdelningen för folkhälsovetenskap.
    Davies, Gareth
    Nederländerna.
    Dèttore, Davide
    Italien.
    Harcourt, Diana
    England.
    Hedin, Gita
    Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Jurgutis, Arnoldas
    Litauen.
    Stepukonis, Faustas
    Litauen.
    Tural, Ümit
    Turkiet.
    Yalçın, A.D.
    Turkiet.
    Persson, Martin
    Kristianstad University, Faculty of Health Science, Avdelningen för sjuksköterskeutbildningarna och integrerad hälsovetenskap.
    Supporting patients with body dissatisfaction: a survey of the experiences and training needs of european multi-disciplinary healthcare professionals2018In: NursingPlus Open, Vol. 4, p. 8-13Article in journal (Refereed)
  • 37.
    Williamson, Heidi
    et al.
    England.
    Antonelli, Paolo
    Italien.
    Bringsén, Åsa
    Kristianstad University, Research Platform for Collaboration for Health. Kristianstad University, Faculty of Health Science, Forskningsmiljön Människa - Hälsa - Samhälle (MHS). Kristianstad University, Faculty of Health Science, Avdelningen för folkhälsovetenskap.
    Davies, Gareth
    Nederländerna.
    Déttore, Davide
    Italien.
    Harcourt, Diana
    England.
    Hedin, Gita
    Kristianstad University, School of Health and Society, Avdelningen för Oral hälsa och folkhälsovetenskap. Kristianstad University, Faculty of Health Science, Research Environment PRO-CARE, Patient Reported Outcomes - Clinical Assessment Research and Education.
    Jurgutis, Arnoldas
    Litauen.
    Stepukonis, Faustas
    Litauen.
    Tural, Umit
    Turkiet.
    Dilara Yalcin, Ayse
    Turkiet.
    Persson, Martin
    England.
    Supporting patients with body dissatisfaction: a survey of the experiences and training needs of european multi-disciplinary healthcare professionals2018In: NursingPlus Open, ISSN 2352-9008, Vol. 4, p. 8-13Article in journal (Refereed)
    Abstract [en]

    Appearance-related concerns resulting from disfigurement or pressure to conform to beauty ideals, indiscriminately affect patients’ mental and physical health. Healthcare professionals face the challenge of addressing patients’ support needs. Therefore a European University Consortium developed a course to address learning needs. Prior to its design, a study with multi-disciplinary European healthcare professionals was conducted to maximize its relevance and acceptability. Healthcare professionals (n = 718; 48% nurses, 30% doctors, 22% allied health professionals) were surveyed regarding the nature and impact of patients’ appearance concerns, confidence in key areas associated with detecting/addressing concerns, and training/educational needs. Participants reported that this subject is highly relevant and 70% described the psychosocial impact of appearance concerns across the lifespan resulting from disfiguring conditions, disability, neurological disease, ageing and weight/shape dissatisfaction. Participants, irrespective of their experience, self-reported inadequate knowledge regarding appearance-specific care, 87% requested further information and 70% wanted access to an accredited course; barriers deterring participation in training were identified. Healthcare professionals across multiple specialties are caring for patients with a wide-range of appearance concerns that impact on physical and mental health and want to increase their appearance-specific knowledge and expertise. Results have informed training/courses which have the potential to improve patient care and ameliorate health-related outcomes.

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  • asciidoc
  • rtf