Pain, psychiatric comorbidities, and psychosocial stressors associated with Klippel-Trenaunay syndrome

Harvey, Jamison A.; Nguyen, Henry; Anderson, Katelyn R.; Schoch, Jennifer J.; Bendel, Emily C.; Driscoll, David J.; Palmer, Brian A.; Tollefson, Megha M.

doi:10.1016/j.jaad.2018.05.1245

Cited by 29 publications

(23 citation statements)

References 9 publications

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“…They were disappointed to not have benefited from such group discussions in the past and expressed the wish to participate in other FGs in the future. These FGs may have long‐term benefits for children since an early, childhood intervention may help minimize future psychological issues 43 . Loneliness, isolation and low self‐esteem expressed by children and adolescents may lead to identity‐building problems in the future 44 .…”

Section: Discussionmentioning

confidence: 99%

Factors influencing quality of life in children with low‐flow vascular malformations: a qualitative study using focus groups

Casassa

Bergeron

Maruani

et al. 2021

Acad Dermatol Venereol

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Background Very few studies have evaluated the quality of life (QoL) of children suffering from low‐flow vascular malformations. This is the first study investigating the influencing factors. Objectives To identify the factors influencing QoL in children with low‐flow vascular malformations. Methods We conducted a qualitative study employing focus group interviews (Clinical Trials Number: NCT03440827). The study was a prospective, interventional, non‐comparative, multicentre study performed in four expert centres for vascular anomalies. Qualitative data about personal experiences, feelings, difficulties, needs and various factors influencing behaviours were collected. Theme‐based content analysis (manual and specialist textural software guided) were used to analyse the verbatim transcripts of all focus group sessions. Manual qualitative discourse analysis was performed to identify the different themes and categories. Informatics' analyses were subsequently performed for each individual category. Results Ten focus groups (26 individuals including 10 children aged 11 to 15 years) were conducted until saturation. Influencing factors were related to 4 categories: medical care, self‐image, social impact on daily activities and challenging social relationships. These factors were responsible for intrafamily upheavals and may lead to future identity‐building problems. Conclusions This study provides an essential framework from which physicians can develop strategies to improve patient care and quality of life. These data may also be useful to develop specific age‐sensitive QoL questionnaires.

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Section: Discussionmentioning

confidence: 99%

Factors influencing quality of life in children with low‐flow vascular malformations: a qualitative study using focus groups

Casassa

Bergeron

Maruani

et al. 2021

Acad Dermatol Venereol

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“…For example, Klippel‐Trenaunay syndrome (KTS) includes capillary malformation, aberrant veins, limb overgrowth, and LM. Patients with KTS can also experience chronic pain, depression, and thrombosis which can require more extensive treatment . CLOVES syndrome is associated with congenital/lipomatous overgrowth, lymphatic/capillary/venous vascular malformations, epidermal nevi, skeletal, and spinal anomalies.…”

Section: Lymphatic Malformation Related To Syndromesmentioning

confidence: 99%

“…Patients with KTS can also experience chronic pain, depression, and thrombosis which can require more extensive treatment. 9 CLOVES syndrome is associated with congenital/lipomatous overgrowth, lymphatic/capillary/venous vascular malformations, epidermal nevi, skeletal, and spinal anomalies. The lipomatous overgrowth is often severely disfiguring and can cause scoliosis and restrictive lung disease.…”

Section: Lymphatic Malformation Related To Syndromesmentioning

confidence: 99%

Clinical application of molecular genetics in lymphatic malformations

Padia

Zenner

Bly

et al. 2019

Laryngoscope Investig Oto

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Objectives To describe the clinical presentation of lymphatic malformations (LM) and genotypically associated disorders and to summarize the recent literature regarding the genetic etiology of LM and provide a biologic correlation to medical and surgical management. Results LM are congenital lesions derived from a developmental abnormality of the lymphatic vessels. The severity of disease varies widely and complications can occur with higher staged disease and those associated with a known constellation of symptoms. Somatic mutations of the PIK3CA gene have been found to be an etiologic factor in the development of LM and associated overgrowth syndromes. Sirolimus is a mammalian target of rapamycin (mTOR) inhibitor that inhibits the pathway downstream of PIK3CA . Preliminary studies in select groups of patients suggest that sirolimus has a role in the medical management of certain aspects of this disease. Conclusions Discovery of LM molecular genetics has led to the possibility of targeted therapies and highlights the importance of precision medicine in rare diseases. Identifying genetic mutations in larger cohorts of patients with LM will lead to additional insights. Knowledge of the genetic basis for disease can then lead to discovery of directed medical therapy. A specific molecular diagnosis can also help families understand better why their child is different and provide accurate counseling for subsequent pregnancies. Level of Evidence 6

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“…41 Possible symptoms and complications associated with this condition include the following: pain; bleeding from the affected skin, gastrointestinal tract, or genitourinary tract; superficial thrombophlebitis; cellulitis; lymphedema; skin ulceration; coagulopathy; deep venous thrombosis; and pulmonary embolism. 21,22,36,[41][42][43] Moreover, the physical disabilities that occur in KTS patients can impair their ability to perform activities of daily living. 37…”

Section: Characteristics Of Ktsmentioning

confidence: 99%

“…Wound complications in KTS include skin ulcers and/or bleeding from the cutaneous vascular le-sions, 21,22,[41][42][43]76 and wound healing problems after surgery have also been reported. 31,[66][67][68][69] Various options for local treatment of skin ulcers in KTS patients have been reported, including negative pressure wound therapy, 77 low-level laser therapy, 78 and topical application of recombinant human platelet-derived growth factor-BB.…”

Section: Wound Healing Problems In Ktsmentioning

confidence: 99%

Wound-Healing Problems Associated with Combined Vascular Malformations in Klippel–Trenaunay Syndrome

Ishikawa

Yamamoto

Funayama

et al. 2019

Advances in Wound Care

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Pain, psychiatric comorbidities, and psychosocial stressors associated with Klippel-Trenaunay syndrome

Cited by 29 publications

References 9 publications

Factors influencing quality of life in children with low‐flow vascular malformations: a qualitative study using focus groups

Factors influencing quality of life in children with low‐flow vascular malformations: a qualitative study using focus groups

Clinical application of molecular genetics in lymphatic malformations

Wound-Healing Problems Associated with Combined Vascular Malformations in Klippel–Trenaunay Syndrome

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