Achieving Consensus in the Measurement of Psychological Adjustment to Cleft Lip and/or Palate

Stock, Nicola Marie; Hammond, Vanessa; Owen, Tina; Kiff, James; Shanly, Angela; Rumsey, Nichola

doi:10.1597/15-071

Cited by 29 publications

(33 citation statements)

References 17 publications

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“…Such an initiative would be a major undertaking, requiring a culture change among researchers, clinicians, and patients alike—but it can be done. In the United Kingdom, an agreement has been achieved between a team of researchers and all of the professional groups that deliver care for patients with cleft lip/palate on a common set of measures that are administered at key stages of development in a prospective birth cohort study (Stock et al, 2016). In a separate initiative, a globally agreed-upon approach to patient outcome measures in cleft care has been reached by an international task force (International Confederation for Cleft Lip and Palate and Related Craniofacial Anomalies, 2017).…”

Section: Moving Forward: a Route Map To Underpin Healthcare That Bettmentioning

confidence: 99%

Psychosocial adjustment to skin conditions resulting in visible difference (disfigurement): What do we know? Why don’t we know more? How shall we move forward?

Rumsey

2018

International Journal of Women's Dermatology

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This article offers an overview of the current understanding of the psychological factors and processes that play a part in the continuum of distress and positive adjustment in people who are affected by dermatological conditions that affect appearance. Despite research demonstrating the significant psychosocial challenges posed by visible difference and mounting evidence of the role played by psychosocial variables in the etiology, exacerbation, and treatment of skin conditions, current healthcare provisions focus predominantly on the amelioration of physical manifestations. Impediments to progress in the understanding of psychological adjustment, blocks to the development of effective interventions, and challenges to the implementation of integrated psychological and medical care are reviewed. A route map to advance current understanding and care provision is proposed.

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Section: Moving Forward: a Route Map To Underpin Healthcare That Bettmentioning

confidence: 99%

Psychosocial adjustment to skin conditions resulting in visible difference (disfigurement): What do we know? Why don’t we know more? How shall we move forward?

Rumsey

2018

International Journal of Women's Dermatology

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“…21 For example, a 2015 study found that more than 60 different measures were being used to evaluate children’s ability to socially adjust to CL/P. 22 Recently, great attention has been paid to developing standardized clinician-reported and patient-reported outcome instruments that accurately measure psychosocial distress. 9,23–25 …”

Section: Introductionmentioning

confidence: 99%

“…22 Recently, great attention has been paid to developing standardized clinician-reported and patient-reported outcome instruments that accurately measure psychosocial distress. 9,23–25 …”

Section: Introductionmentioning

confidence: 99%

“…4,22,26–33 Thus, the aim of this exploratory investigation was to consider the association of cleft phenotype and age with self-reported aspects of psychosocial stress. 3,4,26,28–34 This study employed a cross-sectional, population-based approach to provide an age-based and phenotype-based “snapshot” of psychosocial concerns related to CL/P.…”

Section: Introductionmentioning

confidence: 99%

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A Population-Based Exploration of the Social Implications Associated with Cleft Lip and/or Palate

Glener

Allori

Shammas

et al. 2017

Plastic and Reconstructive Surgery - Global Open

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Background:Clefts of the lip and/or palate (CL/P) carry a social stigma that often causes psychosocial stress. The purpose of this study was to consider the association of cleft phenotype and age with self-reported aspects of psychosocial stress.Methods:Children with nonsyndromic CL/P and unaffected children born between 1997 and 2003 were identified through the North Carolina Birth Defects Monitoring Program and North Carolina birth records, respectively. The psychosocial concerns of children with CL/P were assessed via a 29-question subset of a larger survey. Responses were analyzed according to school age and cleft phenotype (cleft lip with/without cleft alveolus, CL ± A; cleft palate only, CP; or cleft lip with cleft palate, CL + P).Results:Surveys were returned for 176 children with CL/P and 333 unaffected children. When compared with unaffected children, responses differed for CL ± A in 4/29 questions, for CP in 7/29 questions, and for CL + P in 8/29 questions (P < 0.05). When stratified by school age, children with CL/P in elementary, middle, and high school differed from unaffected children by 1/29, 7/29, and 2/29 questions, respectively. Middle school–aged children with CL/P were more affected by aesthetic concerns, bullying, and difficulties with friendship, and social interaction. Children with CL + P reported more severe aesthetic-related concerns than children with CL ± A or CP but experienced similar speech-related distress as children with CP only.Conclusion:Social implications associated with CL/P are most pronounced during middle school, and less so during elementary and high school. This information identifies areas of social improvement aimed at reducing the stigma of CL/P.

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“…Our article outlines a process that began in early 2011, first as a UK-wide endeavor and later as part of the Global Task Force for Holistic Outcomes, an initiative of the American Cleft Palate-Craniofacial Association (ACPA). The article also follows an earlier publication (Stock et al, 2016) in which we describe the process for achieving consensus in the measurement of psychological adjustment at age 0 to 7 years. At the time of the 2017 The International Consortium for Health Outcomes Measurement (ICHOM) publication (Allori et al, 2017), we were nearing the conclusion of our work in this area.…”

mentioning

confidence: 99%

Achieving Consensus in the Measurement of Psychological Adjustment to Cleft Lip and/or Palate

Cited by 29 publications

References 17 publications

Psychosocial adjustment to skin conditions resulting in visible difference (disfigurement): What do we know? Why don’t we know more? How shall we move forward?

Psychosocial adjustment to skin conditions resulting in visible difference (disfigurement): What do we know? Why don’t we know more? How shall we move forward?

A Population-Based Exploration of the Social Implications Associated with Cleft Lip and/or Palate

Achieving Consensus in the Measurement of Psychological Adjustment: A Reply and Reflection

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