We've Got Some Growing Up to Do: An Evidence-Based Service Delivery Model for the Transition of Care for the Young Adult with Cleft Lip and Palate

2017 ◽  
Vol 2 (5) ◽  
pp. 4-17 ◽  
Author(s):  
Linda D. Vallino ◽  
Brenda Louw
Keyword(s):  
Young Adult ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Self Report ◽  
World Health ◽  
International Classification Of Functioning ◽  
Life Transition ◽  
Evidence Based ◽  
Transition Of Care ◽  
Delivery Model

As a child approaches adulthood, many transitions take place; physically and psychosocially. There are new roles and responsibilities. For the young adult with cleft lip and palate (CLP), one of the most significant transitions is moving from the pediatric interdisciplinary team to the adult-centered health care system. There is a shift in focus from the cleft itself and clinician-reported outcomes to patient self-report about the perceived impact of the cleft on quality of life. Transition also befalls the parents and team providers who, through the course of some 18 years, were active participants in the young person's care. Their roles, too, have changed. The International Classification of Functioning, Disability, and Health (ICF; World Health Organization, 2001, 2004) is a conceptual framework for considering the totality of the cleft by addressing the interaction between the person and their personal and social environment. This model is suitably applicable to the transition of care of the young adult with CLP. In this paper, we propose an evidence-based person-centered delivery model of care using the concepts of the ICF to facilitate the transition of care for this population. A case example is presented highlighting the use of these concepts for the speech-language pathologist.

Global Cleft Lip and Palate Outreach: A Google Trends Analysis

2021 ◽  
pp. 105566562110698
Author(s):  
Joshua P Weissman ◽  
Narainsai K Reddy ◽  
Nikhil D Shah ◽  
Arun K Gosain
Keyword(s):  
Cleft Palate ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
The Philippines ◽  
Google Trends ◽  
World Health ◽  
Patient Awareness ◽  
Number Of Patients ◽  
Who Indicators ◽  
Cleft Surgery

Understanding patient awareness of cleft lip and/or palate (CL/P) and evaluating demand for necessary procedures may serve to better target future efforts in global outreach. We utilized internet search query data from Google Trends for the terms: “cleft lip,” “cleft palate,” “cleft lip and palate,” “cleft surgery,” and “cleft repair” from January 2004 to January 2021. Relative search volumes (RSV) recorded for the top 5 highest displaying countries and top 3 available regions within those countries were compared against global outreach by Operation Smile and Smile Train, as measured by the number of patients treated. World Health Organization (WHO) indicators were used to validate the RSV values for each country and better understand the current infrastructure and need for cleft care in those countries. Globally, there was an increase in RSV for the terms “cleft lip,” “cleft palate,” “cleft repair,” and “cleft surgery” between 2004 and 2021. For “cleft lip,” the countries with the highest displaying RSVs included: Ghana (100%), Zimbabwe (97%), Nepal (78%), the Philippines (64%), and Kenya (52%). Countries with high RSVs and moderate to high WHO indicators included Ghana, Kenya, India, Nigeria, and Zimbabwe. Countries with high RSVs and poor WHO indicators included Nepal and Pakistan. Some countries had specific regions with high search demand that are not currently targeted for global outreach. Using Google Trends’ data may help find more feasible locations and targeted care for efforts in global outreach with better patient awareness and turnout where demand for CL/P is increasing.

scholarly journals Development and content validity of the Abilitator: A self-report questionnaire on work ability and functioning aimed at the population in a weak labour market position

2020 ◽  
Author(s):  
Miia Wikström ◽  
Heidi Anttila ◽  
Minna Savinainen ◽  
Anne Kouvonen ◽  
Matti Joensuu
Keyword(s):  
Labour Market ◽  
Work Ability ◽  
Content Validity ◽  
Target Group ◽  
Self Report ◽  
World Health ◽  
International Classification Of Functioning ◽  
Health Measurement ◽  
Market Position ◽  
Labour Market Position

Abstract Background: The unemployed have lower work ability and poorer health than the employed. This situation deteriorates when unemployment continues. The long-term unemployed often have co-morbidities and face many other challenges. This increases the need for a multidimensional assessment of work ability and functioning in different service settings. In this study, we describe the development and analyse the content validity of the Abilitator, a self-report questionnaire on work ability and functioning for those in a weak labour market position. Methods: The Abilitator was developed in 2014–2017. Its construct was assessed by members of academic expert panels (n=30), practical expert panels of professionals (n=700) and target group clients (n=28). The structure and the content of the questionnaire was co-developed in 29 workshops and adjusted twice based on the expert panels’ feedback. The Abilitator was also implemented among target group clients (n=3360) in different services and projects. During its development the Abilitator was linked to the International Classification of Functioning, Disability and Health (ICF). The content validation process followed the guidelines recommended by the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) panel. Results: The construct of the Abilitator combines the multidimensional and biopsychosocial models of work ability and functioning. It also includes aspects of social inclusion and employability. It evaluates social, psychological, cognitive and physical functioning, and the ability to cope with everyday life. The content of these concepts was validated by the academic and practical expert panels. The Abilitator’s 79 ICF codes covered 57% of the Generic, 77% of the Brief Vocational Rehabilitation, and 8% of the Minimal Environmental ICF Core Sets. When compared with the Work Ability Index (WAI) and the World Health Organization Disability Assessment Schedule (WHODAS 2.0), the direct equivalences of the ICF codes were 36% and 44%, respectively. Conclusion: The Abilitator sufficiently comprehensively covers the relevant aspects to enable the assessment of the overall work ability and functioning of the population in a weak labour market position.

scholarly journals Correlation between quality of life and burden of family caregivers of infants with cleft lip and palate

2019 ◽  
Vol 53 ◽  
Author(s):  
Marli Luiz Beluci ◽  
Cleide Carolina da Silva Demoro Mondini ◽  
Armando dos Santos Trettene ◽  
Rosana Aparecida Spadoti Dantas
Keyword(s):  
Quality Of Life ◽  
Family Caregivers ◽  
Cleft Lip ◽  
Family Income ◽  
Cleft Lip And Palate ◽  
World Health ◽  
Cross Sectional ◽  
World Health Organization Quality ◽  
Environment Domain

ABSTRACT Objective: To evaluate the correlation between measures of quality of life and burden in family caregivers of infants with cleft lip and palate and to analyze possible associations between quality of life and sociodemographic variables. Method: Exploratory, cross-sectional study conducted in hospital specialized in the treatment of craniofacial anomalies, with caregivers who answered the following data collection instruments: sociodemographic characterization form, World Health Organization Quality of Life - BREF questionnaire and the Burden Interview Scale. The statistical analysis was conducted using the Pearson’s Correlation test, the Student’s t-test and the ANOVA test with a level of significance of 0.05. Results: 77 caregivers participated in the study. There was an inverse correlation between quality of life and burden in the Physical Health, Psychological, Social Relationships and Environment domains. There was a positive correlation between quality of life and family income in the Environment domain. Conclusion: The greater the burden on the caregiver, the lower was their perception of quality of life. Caregivers with higher family income and greater level of education presented a better perception quality of life in the Environment domain.

scholarly journals Quality of life of individuals with cleft lip and palate pre- and post-surgical correction of dentofacial deformity

2016 ◽  
Vol 50 (2) ◽  
pp. 217-223 ◽  
Author(s):  
Marli Luiz Beluci ◽  
Katia Flores Genaro
Keyword(s):  
Quality Of Life ◽  
Oral Health ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Surgical Correction ◽  
Wilcoxon Test ◽  
World Health ◽  
Dentofacial Deformity ◽  
The Impact

Abstract OBJECTIVE To assesses the quality of life and the impact of oral health conditions in the pre- and post-surgical correction of dentofacial deformity of individuals with cleft lip and palate. METHOD Quantitative and prospective study in a referral hospital in the period from June 2011 to May 2013. A total of 50 participants responded the questionnaires World Health Organization Quality of Life - Bref (WHOQOL-Bref) and Oral Health Impact Profile - 14 (OHIP-14), approximately 3 days before and 3 to 12 months after surgery. The "t" test for paired samples and Wilcoxon test were used for statistical analysis with a significance level of 5%. RESULTS After surgery, differences were found in the domains: Physical, Psychological, Environmental and General Questions of the WHOQOL-Bref and domains: Psychological Discomfort, Psychological Disability, Social Disability, Handicap and Overall Score of OHIP-14. CONCLUSION Surgical correction of dentofacial deformity improved quality of life and had positive impact of oral health condition.

Multidisciplinary Treatment of an Untreated Young Adult Patient with Unilateral Complete Cleft Lip and Palate

2016 ◽  
Vol 28 (3) ◽  
pp. 96-102
Author(s):  
Belma I. Aslan ◽  
Ebru Kucukkaraca ◽  
Mustafa S. Atac ◽  
A. Zeynep Yildirim-Bicer ◽  
Neslihan Ucuncu
Keyword(s):  
Young Adult ◽  
Adult Patient ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
Multidisciplinary Treatment ◽  
Young Adult Patient

Multiple Sclerosis and Employment: A Research Review Based on the International Classification of Function

2015 ◽  
Vol 29 (2) ◽  
pp. 153-164 ◽  
Author(s):  
Michael P. Frain ◽  
Malachy Bishop ◽  
Phillip D. Rumrill ◽  
Fong Chan ◽  
Timothy N. Tansey ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
International Classification ◽  
World Health ◽  
International Classification Of Functioning ◽  
Research Review ◽  
Evidence Based ◽  
Disability And Health ◽  
Working Lives ◽  
Health Model

Multiple sclerosis (MS) is an unpredictable, sometimes progressive chronic illness affecting people in the prime of their working lives. This article reviews the effects of MS on employment based on the World Health Organization’s International Classification of Functioning, Disability and Health model. Correlations between employment and personal, functional, environmental, and participation factors are discussed along with the need for a framework for evidence-based practice regarding the employment of people with MS.

scholarly journals A study to assess the nutritional status of children with cleft lip and/or cleft palate and its correlation with breast feeding at a tertiary health care centre

2018 ◽  
Vol 5 (4) ◽  
pp. 1594
Author(s):  
Abhilasha Sampagar ◽  
Bhavana Lakhkar ◽  
Ashok Sampagar ◽  
Jayanth Wagha
Keyword(s):  
Nutritional Status ◽  
Cleft Palate ◽  
Breast Feeding ◽  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
World Health ◽  
Severe Malnutrition ◽  
Healthy Children ◽  
Female Ratio ◽  
Nutritional Status Of Children

Background: Cleft lip with or without cleft palate is one of the most common congenital anomalies. In 2008, the World Health Organization included cleft lip and palate in their Global Burden of Disease initiative. The incidence of cleft lip and palate in India is enormous: one in 781 live births. The growth of children with these deformities is often impaired in comparison to healthy children. Several studies describe a growth lag in either weight or height of cleft children. The objective of the study was to observe the nutritional status of children with cleft lip and/or cleft palate and its correlation with breastfeeding.Methods: A cross sectional study was conducted at Department of Pediatrics, AVBRH Sawangi (Meghe), Wardha for the period of two years from August 2010 to March 2012. All children below 15 years with cleft lip and/or palate admitted in the pediatric ward, NICU or postnatal ward were included in the study. A Total  of 200 children were included in the study and analyzed.Results: Male to female ratio was 1.4:1. The commonest type of defect was both the defects present together (62%) which was significantly more than individual defects (א2=23.98, p<0.0001). It was followed by isolated cleft lip (25.5%) and isolated cleft palate (12.5%). Malnutrition was more common in children who were deprived of breast milk (χ2=22.61, Significant). Significantly more children (69.6%) below the age group of 5 yrs were malnourished. (χ2=16. Significant).Conclusions: Our results confirm that, malnutrition is more prevalent in children with orofacial clefts. Lack of breast feeding is a significant contributor to severe malnutrition and recurrent infections in these children.

scholarly journals COMPLEX TREATMENT EFFICIENCY, ANALYZED IN CHILDREN WITH CONGENITAL CLEFT LIP AND PALATE, USING INTERNATIONAL CLASSIFICATION OF FUNCTIONING

2018 ◽  
Vol 35 (3) ◽  
pp. 74-78
Author(s):  
L I Aleksandrova
Keyword(s):  
Cleft Lip ◽  
Cleft Lip And Palate ◽  
International Classification ◽  
International Classification Of Functioning ◽  
Functional Disorders ◽  
Group I ◽  
Wide Range ◽  
Bilateral Cleft Lip ◽  
Congenital Cleft

Aim. To determine the structure of functional disorders and their dynamic changes in children with congenital cleft lip and palate from the position of International Classification of Functioning. Materials and methods. The indices, included into International Classification of Functioning, were assessed in 77 children (age range 1 to 6 years) with congenital cleft lip and palate, who received a complex five-stage therapy. Results. Direct correlation between the type of cleft and the value of disorders in classification constituents “function” and “structure” was revealed. Thus, in patients with bilateral cleft lip and palate, disorders of functions reached 82 %, in children with one-sided cleft lip and palate - 45 %. In children of group I, more marked structural disorders were observed, forming from 24 to 96 %, in children of groups 2 and 3 - from 5 to 49 %. In children with bilateral cleft lip and palate, there were observed more marked abnormalities in the category “activity and participation” (25-95 %) compared to children of groups 2 and 3 (0-24 %). Conclusions. Application of International Classification of Functioning for children with congenital cleft lip and palate shows a wide range of the assessed functional disorders and the possibility of using it for dynamic analysis of efficiency and treatment.

scholarly journals Development and content validity of the Abilitator – a self-report questionnaire on work ability and functioning aimed at the population in a weak labour market position

2019 ◽  
Author(s):  
Miia Wikström ◽  
Heidi Anttila ◽  
Minna Savinainen ◽  
Anne Kouvonen ◽  
Matti Joensuu
Keyword(s):  
Labour Market ◽  
Work Ability ◽  
Content Validity ◽  
Target Group ◽  
Self Report ◽  
World Health ◽  
International Classification Of Functioning ◽  
Health Measurement ◽  
Market Position ◽  
Labour Market Position

Abstract Background The unemployed have lower work ability and poorer health than the employed. This situation deteriorates when unemployment continues. The long-term unemployed often have co-morbidities and face many other challenges. This increases the need for a multidimensional assessment of work ability and functioning in different service settings. In this study, we describe the development and analyse the content validity of the Abilitator, a self-report questionnaire on work ability and functioning for those in a weak labour market position. Methods The Abilitator was developed in 2014–2017. Its construct was assessed by the members of academic expert panels (n=30), practical expert panels of service actors (n=700) and target group clients (n=28). The structure and the content of the questionnaire was co-developed in 29 workshops and adjusted twice based on the expert panels’ feedback. The Abilitator was also implemented among target group clients (n=3360) in different services and projects. During its development the Abilitator was linked to the International Classification of Functioning, Disability and Health (ICF). The content validation process followed the guidelines recommended by the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) panel. Results The construct of the Abilitator combines the multidimensional and bio-psycho-social models of work ability and functioning. It also includes aspects of social inclusion and employability. It evaluates social, psychological, cognitive and physical functioning, and the ability to cope with everyday life. The content of these concepts was validated by the academic and practical expert panels. The Abilitator’s 79 ICF codes covered 50% of the Generic, 73% of the Brief Vocational Rehabilitation, and 17% of the Minimal Environmental ICF Core Sets. When compared with the Work Ability Index (WAI) and the World Health Organization Disability Assessment Schedule (WHODAS 2.0), the direct equivalences of the ICF codes were 29% and 39%, respectively. Conclusions The Abilitator covers the relevant aspects sufficiently comprehensively to enable the assessment of the overall work ability and functioning of the population with weak position in the labour market.

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