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Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary GalaFriday, October 10, 2014 in New York City

VBF 2014 Annual ConferenceSaturday, October 11, 2014 in New York City

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Ask the VBF Experts

Dr. Stuart Nelson, VBF Co-Medical Director and International Port Wine Stain Laser Specialist
Dr. Nelson will answer your questions concerning the diagnosis and treatment of Port Wine Stains.

 

Dr. Gregory Levitin, Hemangioma and Malformations Surgeon, NYC and LA
Dr. Levitin will answer your questions regarding the surgical treatment of all vascular birthmarks and tumors.

 

Dr. Robert Rosen, Vascular Lesions of Arms and Legs Interventional Radiologist
Our expert for all non-brain AVMs and vascular lesions of the arms and legs, Dr. Rosen welcomes your questions.

 

Dr. Roy Geronemus, NYC and International Laser Specialist
If you have a question or concern about laser treatments in general, contact Dr. Geronemus.

 

Dr. Aaron Fay, Hemangioma and Malformation Eye Surgeon
Dr. Fay will answer your questions about orbital birthmarks.

 

Corinne Barinaga, VBF Family Services Director
Corinne Barinaga, our Administrative Director, will answer emails concerning family advocacy, treatment questions, or physician referral.

 

Dr. Martin Mihm, VBF Co-Medical Director and Research Director
Dr. Mihm is coordinating and directing research regarding vascular birthmarks and tumors.

 

Dr. Darren Orbach, Pediatric Neurointerventionalist for AVMs and PHACE
VBF is proud to welcome Dr. Orbach!

 

Dr. Anne Comi, Sturge Weber Syndrome Specialist
One of the leading experts on Sturge Weber Syndrome, Dr. Comi will be responding to your questions concerning this syndrome.

 

Dr. Alex Berenstein, Malformations and AVM Interventional Radiologist
Ask Dr. Berenstein your questions regarding interventional radiology.

 

Dr. Kami Delfanian, KTS Treatment Specialist
Send your questions concerning KT Syndrome to Dr. Delfanian.

 

Dr. Barry Zide, NYC Hemangioma and Malformations Surgeon
If you have a question or concern about hemangioma and vascular malformation treatment in general, contact Dr. Zide.

 

Basia Joyce, VBF Insurance Appeals Specialist
Please send your questions regarding your appeal or request for out-of-network treatment to Basia.

 

Dr. Joseph Edmonds, Lymphatic Malformations Surgeon
Ask Dr. Edmonds your questions related to Lymphatic Malformations.

 

Anna Duarte, M.D., Florida Expert
Ask our expert Dr. Duarte, your questions about receiving treatment in Florida.

 

Dr. Orhan Konez, Interventional Radiologist
Questions regarding reading and interpreting films and treating malformations with sclerotherapy or embollization can be sent to Dr. Orhan Konez.

 

Dr. Milton Waner, Hemangioma and Malformations Surgeon
Email Dr. Waner with questions regarding hemangiomas and other vascular lesions.

 

Dr. Steven Fishman, Internal Lesions Surgeon
Ask Dr. Fishman your questions about liver and other internal vascular lesions.

 

Dr. Calil, Lymphatic Malformation Surgeon
Dr. Calil will answer your questions about Lymphatic Malformations.

 

Elissa-Uretsky Rifkin, M.Ed. CMHC Midwest Developmental Specialist
A trained developmental specialist and is on the board of VBF. Send questions concerning hemangiomas and this topic to Elissa.

 

Dr. Stavros Tombris, European Surgeon
Fr. Tombris treats all forms of hemangomas, port wine stains and malformations.

 

Dr. Stevan Thompson, Military (Tricare) Surgeon
Dr. Stevan Thompson has joined us to answer questions concerning the treatment of vascular birthmarks in the military.

 

Dr. Helen Figge, Pharmacist
If you or your child has a vascular birthmark and you have a question regarding a prescription drug, please ask Doc Helen Figge.

 

Dr. Linda Rozell-Shannon, VBF President and Founder
Dr. Linda Rozell-Shannon is the leading lay expert in the world on the subject of vascular birthmarks.

 

Lex Van der Heijden, CMTC Foundation
If you or your child has CMTC, please contact Lex with your questions.

 

Leslie Graff, East Coast Developmental Specialist
Leslie is a trained developmental specialist. Send questions concerning port wine stains and this topic to Leslie.

 

Linda Seidel - Make-up Expert
Ask Linda Seidel your questions about make-up.

 

Nancy Roberts - Make-up Specialist
Ask our expert Nancy Roberts, Co-Creator of Smart Cover Cosmetics (www.smartcover.com), your questions about make-up.

 

Eileen O'Connor, Adult Living with PWS

 

Laurie Moore, Make Up Expert from Colortration
Laurie Moore, from www.colortration.com will answer makeup related concerns.

 

Alicita, Spanish Expert
Ask our expert Alicita, your questions in Spanish.

 

Dr. Thomas Serena, Wound Care Expert

 

Sarina Patel, Young Adult Advocate

 




 

What Our Families Are Saying About Us

 

"We relied on the Vascular Birthmarks Foundation to provide us with the information, the contacts, the resources, and the support that we needed to get through this difficult time. Their theme, "We are making a difference" couldn't be more accurate. For us, it was all the difference in the world."
Jill Brown

 


Hi Linda
Just a note to say how wonderful I found the interview of you and Capital 9 news. Thanks so much for your devotion.
Gina

 




A Psychological Profile of Children and Families Afflicted with Hemangiomas


Edwin F. Williams III, M.D.*, Marcelo Hochman, M.D.**, Bret J. Rodgers***, M.D.,

David Brockbank, B.A.****, Linda Shannon, M.S.*****, Samuel M. Lam, M.D******

*Clinical Associate Professor, Division of Otolaryngology, Department of Surgery,
Albany Medical College, Albany, New York
Chief of Division, Facial Plastic & Reconstructive Surgery,
Albany Medical College, Albany, New York
Medical Director, Williams Center for Facial Plastic Surgery,
Latham, New York

**The Facial Surgery Center,
Charleston, South Carolina

***Rodgers Center for Facial Plastic Surgery,
Boise, Idaho

*****Albany Medical College,
Albany, New York

*****President and Founder,
Vascular Birthmarks Foundation,
Albany, New York

******Clinical Instructor, Division of Otolaryngology, Department of Surgery,
Albany Medical College, Albany, New York
Stratton Veteran Affairs Medical Center, Albany, New York

 

Abstract

Objective:  To assess the psychosocial impact of hemangiomas and of their treatment on children afflicted with the disease and their family.

Setting:  Two private, ambulatory surgery centers (Latham, NY and Charleston, SC)

Design:  39 children who were treated for hemangiomas were evaluated by questionnaire that addressed the emotional attitudes of the parent and child toward the disease and the related treatment.

Results:  Overall, the survey found a negative effect on the child’s family with considerable fear caused in part by adverse public commentary or attitudes – which was ameliorated by education from the primary care provider and specialist.  However, the family’s perception was that the child was not deeply affected by his/her condition and that treatment (laser, intralesional steroids, oral steroids, surgery, or a combination) did not change the child’s emotional response to the disease.  However, most parents observed that their child was too young to appreciate his/her malady.

Conclusions:  Given earlier intervention today for children with late-involuting hemangiomas and the advent of more effective therapies, our survey did not seem to indicate that the children suffered significant emotional trauma from their condition but that nevertheless their families experienced appreciable emotional and psychological distress.

Introduction

Hemangiomas are the most common neoplasm of infancy and childhood, with an estimated prevalence of 1-3% of all neonates 1,2 and 10% of infants by 1 year of age.3,4  Most hemangiomas arise in the head and neck region (60%), and 20% of patients may suffer from more than one lesion.5  Given these facts and that hemangiomas may be unsightly birthmarks, the psychological stress on the developing child and family cannot be underestimated.  Hemangiomas exhibit a natural history of proliferation during the first year of life – a fact that may only further compound familial anxieties about their child’s condition.  However, only a small minority of hemangiomas actually requires intervention, as they often tend to involute prior to the age when the child should enter school.  Most hemangiomas undergo involution during the second year of life and may completely regress.

If these oftentimes disfiguring vascular lesions do not involute early, they may have profound psychosocial effects on the child and family and may lead at times to accusations of child abuse and other misconceptions as this study will show.  In addition, reports of late involuting hemangiomas have found a high incidence of a marked residual deformity.  Although several studies have investigated the impact that port-wine stains, or capillary vascular malformations, have on the child’s tender psyche and the benefit that treatment affords 6-12, fewer studies exist that examine the psychological ramifications of hemangiomas on the child and family 13-15.

Technological advances in the treatment of vascular lesions have also been remarkable and kept stride with intellectual gains.  Prior to the introduction of laser therapy, many individuals were left only with the option of cosmetic camouflage.  The earlier laser types, the argon and ND:Yag, often led to undesirable scarring, a side effect rarely encountered with the pulse-dye laser.  Some authors still advocate the efficacy of interstitial KTP and ND:Yag lasers  when treating the deeper component of the hemangioma not amenable to the pulse-dye laser.16  Pharmacological intervention with steroids (both intralesional and systemic), alpha-interferon, and bleomycin has been investigated and implemented with varying success.17-19  Surgery has remained a mainstay of therapy for those lesions that are refractory to the above methods or that are deemed more suitable to surgical debulking.

Given the recent advances in hemangioma management and the relative paucity of literature on the psychological sequelae of this disease, this paper is intended to address these deficiencies and hope to provide a meaningful contribution to our understanding of the untoward psychological effects that hemangiomas may wrought on the child and family.

Methods

39 families were interviewed by phone about their child’s hemangioma using a 38-point questionnaire that covered the child’s birth history, the natural history of the hemangioma, physician encounters, treatment interventions and the family and child’s emotional attitudes toward the hemangioma and related treatment.  Initially 112 charts were evaluated for this study, but the majority was excluded from inclusion due to the presence of a vascular malformation rather than a true hemangioma, the lack of any therapy administered, or the inability to contact the family.  Of the 39 patients, 17 children were patients of Dr. Williams (Latham, NY), and 19 children were patients of Dr. Hochman (Charleston, SC).  29 children were female, and 10 were male, which correlates well with the sex distribution reported in the literature.

Results

Birth History

The birth history of the child reveals a high incidence of complications (35.9%), which included 4 cases of preeclampsia, 1 case of prematurity, 2 traumatic births, 2 cases of hyperemesis, 2 cases of gestational diabetes, 2 twin-twin transfusions, and 1 failure to thrive.  Only one case of prematurity (28-weeks gestation) occurred, which is much lower than the reported figure of 25%.  A third of the patients (33.3%) reported a family history of hemangiomas, which is higher than one study which found a 10% rate of familial association.20  35.9% of mothers took oral contraceptives prior to pregnancy, but all stopped their prophylactic medications one month prior to conception.  None, however, took any fertility medications.

History of the Hemangioma

Almost half of the hemangiomas presented at birth (43.6%), and all were evident by 2 months of age (Figure 5).  The majority of the treated hemangiomas occurred in the head and neck region (75%), most frequently on the cheek (n=10) and forehead (n = 8) (Figure 6).  Eleven children (25.6%) had multiple hemangiomas, ranging from 2 to 4 with an average of 2.5 lesions.  However, only one of the children had more than one hemangioma (specifically 2 lesions) treated.

Physician Encounters

Parents attested to the accuracy with which their primary care physicians diagnosed the vascular lesion (94.9%) and remarked that only 23.1% of the time did they recommend any treatment.  (As stated, all patients in this study were selected who eventually underwent treatment.)  Nevertheless, these families sought more expert opinion from the Vascular Birthmark Clinic at various stages in the evolution of the hemangioma, with the children ranging from 2 weeks to 12 years of age (Figure 7).  All parents perceived that their visit to the Vascular Birthmark Clinic was informative and that a treatment plan was clearly formulated.  97.4% of the parents professed that they could make a rational decision on the management of their child’s hemangioma based on the information supplied by the Vascular Birthmark Clinic.

Treatment History

As detailed in the introductory remarks of this paper, the treatment algorithm was determined based on the guidelines enumerated in Williams et al.’s study.21  Hemangiomas that were deemed rapidly proliferating in a cosmetically sensitive area, i.e., the face and neck; that risked impending ulceration or had ulcerated; that were categorized as late involuters; or those lesions that remained stable into the school years were candidates for therapy. Only patients who underwent therapy for their hemangioma were included in this study in order to assess the psychological effects of treatment intervention.

When treatment was recommended, the modalities used were pulse-dye laser, intralesional steroid injections, oral steroids, and surgery, or a combination of the above.  79.5% of patients underwent pulse-dye laser therapy, with a range of 1 to 10 treatments and an average of 3.  Most patients (77.4%) were 1 year old or younger and were administered laser therapy in order to retard the proliferative nature of the hemangioma.  22.5% of patients treated with the laser were significantly older (at least 2 years old), and laser treatment was primarily aimed at eliminating dermal ectasias and/or reduce the residuum and often was combined with surgery.  Steroids are only effective during the proliferative phase of the hemangioma, and treatment was confined only to this period.  Intralesional steroid injection was employed in 7 patients (17.9%), with a range of 1 to 6 treatments and an average of 1.9.  All steroid injections were given as an adjunct to laser therapy during the proliferative phase of the hemangioma, as all patients were less than 1 year of age.  Oral steroids were administered in 6 patients (15.4%) during the proliferative phase of the hemangioma, 4 of whom had therapy initiated prior to presentation at the Vascular Birthmark Clinic and 2 of whom were started on systemic therapy to treat an obstructing lesion (1 near the eye and the other in the subglottic airway). Finally, surgery was performed, either once or twice, in 22 patients (56.4%), ranging in age from 2 months to 7 years.

Psychosocial Questionnaire

A 15-point questionnaire was then administered to assess the emotional and psychological effects that the hemangioma had on both the family and child (Table 1, 2).  Parents were asked to respond to questions with one of the following opinions:  strongly agree, agree, no change, disagree, or strongly disagree.   The first part of the questionnaire pertained to the attitudes that the family and child had toward the hemangioma, and the second part concerned the emotional response to treatment.  Parents expressed fear and anxiety towards the presence of the lesion (43.6% strongly agree and 43.6% agree).  This anxiety was only partially alleviated by the primary care physician’s advice (15.4% strongly agree and 43.6% agree) regarding the hemangioma, but a greater percentage of parents professed that the advice delivered by the Vascular Birthmark Clinic mitigated their concern (51.3% strongly agree and 41.0% agree).

Most parents testified to the negative commentary or stares they received from others (66.7% strongly agree and 23.1% agree), leading them to seek professional advice from a specialty clinic (51.3% strongly agree and 23.1% agree).  25.6% of parents professed that they were actually accused of child abuse because of their child’s vascular lesion.  Although the hemangioma provoked anxiety in parents, a mixed response was given regarding the negative emotional effect on the family (17.9% strongly agree, 35.9% agree, 7.7% believe no change, 28.2% disagree, and 10.3% strongly disagree) and even less of an emotional burden on the afflicted child according to parents’ perceptions (10.3% strongly agree, 7.7% agree, 17.9% believe no change, 43.6% disagree, and 20.5% strongly disagree.)  Similarly, the parents thought that the hemangioma did not adversely interfere with the child’s social activities (43.6% disagreeing that it interfered and 28.2% strongly disagreeing).  However, parents acknowledged that their children were too young to appreciate their own condition. 

The second half of the questionnaire addressed the emotional response of the parent and child to the treatment of the lesion (Table 2).  Three questions that pertained to the child’s attitude toward his condition after treatment received similar responses from parents, namely, that the child was not affected positively or negatively by the treatment.  51.2% reported no change in self-esteem; 53.8% witnessed no change in the degree of embarrassment; and 46.1% claimed that no change occurred in the child’s willingness to participate in social gatherings.  Most respondents, however, qualified their opinions by declaring that their child was too immature to appreciate his/her condition.  However, the few, older children (n=8) that ranged in age from 3 to 8 years old revealed proportionally greater benefit from treatment compared to their younger confreres.  The majority of parents of these older children thought that treatment effected significant improvement in the child’s self-esteem with 50% strongly agreeing, 25% agreeing, and 25% believing no change was evident.  Also they agreed that their children were less embarrassed with 37.5% strongly agreeing, 50% agreeing and 12.5% believing that no change existed.  Overall, most parents (66.7%) confirmed that no change occurred in the relationship they maintained with their child after treatment.  Nevertheless, 94.9% (66.7% strongly agree and 28.2% agree) of parents believed that the emotional removal was commensurate to the physical removal of the hemangioma, which testifies to the intangible benefit that treatment may afford.

Comment

Treatment of vascular lesions has undergone a revolution in thought and practice in the past ten years.  Earlier intervention and advanced therapeutic modalities, such as laser therapy, have permitted the patient and family the opportunity to remove the hemangioma earlier and more effectively and thereby mitigate the psychological impact that the hemangioma may otherwise have.  The aforementioned psychological profiles on hemangioma patients and family members were conducted, for the most part, prior to 1993 and may be considered outdated in some respects considering the new treatment algorithms and methods.  In contrast, the psychological studies on port-wine stains have been published principally at the turn of this millennium (1997-2000) and may reflect more current treatment designs.

The understanding of the nature and evolution of hemangiomas has been further refined since the seminal work of Mulliken and Glowacki 22, who distinguished hemangiomas from vascular malformations based on the former’s endothelial proliferative characteristics.  Older terminology, such as capillary and cavernous hemangiomas and strawberry nevi, has fallen into disfavor and has been replaced with a more standardized nomenclature of superficial, deep, and compound hemangioma.  More recently, hemangiomas have been further subdivided clinically into early and late involuters, with the former resolving at 1 to 2 years and the latter, after 2 years.  Based on these characteristics, an algorithm for early intervention has been proposed for the late involuters in order to avoid the attendant social stigma that would occur after entering school and further to address the substantial residuum often seen in these children.21  Similarly, rapidly proliferative hemangiomas in a cosmetically sensitive area or that risk ulceration are also treated early.  The patients who were evaluated in this study were managed following the guidelines of this new paradigm.

By virtue of their scientific nature, physicians are prone to measure the success of their treatment in terms of objective criteria, such as removal of disease or avoidance of morbidity.  At times, physicians look toward their patients for approbation and confirmation that their patients are satisfied with the care they have received. Rarely, do health-care providers weigh the psychological burden that a disease process carries or, even less frequently, what steps should be taken to avoid the development of such emotional trauma.  The psychological condition of the patient may be considered inaccessible or too elusive to ascertain reasonably in an objective fashion.  Therefore, few studies have investigated the psychological import of a disease or how treatment may favorably alter the patient’s outlook.

Management of hemangiomas has remained shrouded in uncertainty for many years given the potential for these lesions to regress spontaneously.  Many physicians have advocated a policy of benign neglect in which the child is permitted to mature into early childhood without intervention.  Newer studies have documented that a substantial proportion of hemangiomas do not involute:  one study established that only 50% regressed by age 6 and of that group, 38% retained a marked cosmetic deformity.23  Based on these findings, hemangiomas that exhibit signs of late involution should be subjected to earlier management to avoid the potential psychological sequelae that this protracted waiting period may engender in the child.

The few psychosocial studies that have examined the effects of late intervention have documented the very real trauma that children and their families sustained from the presence of the hemangioma at such a late age.13-15  The child’s body image is poorly developed prior to age 3, but by age 7 he/she usually has a mature self-identity and is able to distinguish aesthetic concepts that may render the child feeling different from his peers.  During the intervening years between 3 and 7 years of age, the child has already slowly acquired his/her perception of body identity; and it becomes imperative that the surgeon/physician intervene prior to this period to abort any negative social effects.  The advantage of early intervention should be apparent for parent and child alike to avoid the negative social perceptions toward the parent and the ostracism that may ensue for the child at school.

This paper underscores the importance of evaluating the psychological role that hemangiomas may have on the entire family unit and that treatment should be tailored in this respect to curtail the damaging effects.  Our findings overwhelmingly indicate that the parents believe the emotional burden matches the physical nature of the disease, and this opinion should help to guide physicians as they counsel their patients about treatment.  However, a caveat must be offered at this point:  parental anxiety should never dictate the timing of treatment because early involuting hemangiomas have a high likelihood of complete regression and should be given the chance to do so.  Premature intervention in stable, regressing, or non-obstructive lesions does a disservice both to the child and family.  We must also consider the cost constraints dictated by insurance providers yet maintain the need for treatment when appropriate.  We believe that a judicious policy should be advocated of early intervention in hemangiomas that are rapidly proliferating or that fail to involute early in order to preclude the negative psychological impact on the developing child.  In fact, the children in this study were not significantly affected by their disease process likely because they were too immature, an opinion that their parents repeatedly offered without provocation from the interviewer. The few, older children who were enrolled in this study showed proportionally greater psychological suffering from their disease than their younger counterparts.

All children who were included in this study underwent therapy for their hemangioma – a fact that may predispose this study toward some bias.  Only treated patients were studied in order to assess both the disposition of the family and child toward the disease and to determine whether any beneficial change should arise from treatment.  Clearly, both younger and older children who never underwent treatment or who remained only under the care of their primary physicians would be a subject worthy of further analysis.  A multi-armed study in which treated and untreated children were evaluated in a prospective fashion would hold greater scientific merit.  However, the authors strongly feel that the proposed treatment algorithm represents a standard of care and that patients intentionally left untreated for the purposes of a scientific study would be, in our opinion, inappropriate.  Despite the limitations of this retrospective approach, we hope that this study should still encourage physicians to weigh the psychological dimensions with the more tangible physical attributes of the hemangioma when counseling the family and when deciding a course of therapy.

Conclusions

Treatment of hemangiomas has undergone a remarkable transformation in the past decade owing in part to better understanding of the disease and a more effective therapeutic arsenal.  Few studies have investigated the psychological ramifications of these particular vascular lesions on the child and family.  Our results indicate that the parents bear the burden of psychological distress concerning their child’s disease and that the young child remains relatively unaware of his/her condition according to parents’ perceptions.  Earlier treatment protocols may account for the immature child’s immunity from psychological repercussions.  Further clinical studies are needed to confirm these preliminary findings.

References

1.     Pratt AG.  Birthmarks in infants.  Arch Dermatol. 1967;67:302-5.

2.     Jacobs AH, Walton RG.  The incidence of birthmarks in the neonate.  Pediatrics. 1976;58:218-22.

3.     Holmdahl K.  Cutaneous hemangiomas in premature and mature infants.  Acta Paediatr.  1955;44:370.

4.     Jacobs AH.  Strawberry hemangiomas:  the natural history of the untreated lesion.  Calif Med.  1957;86:8.

5.     Margileth AM, Museles M.  Cutaneous hemangiomas in children:  diagnosis and conservative management.  JAMA.  1965;194:523-6.

6.     Augustin M, Zschocke I, Wiek K, et al.  Coping with illness and quality of life of patients with port-wine stains treated with laser therapy.  Hautarzt.  1998;49:714-8 (in German).

7.     Miller AC, Pit-Ten Cate IM, Watson HS, Geronemus RG.  Stress and family satisfaction in parents of children with facial port-wine stains.  Pediatr Dermatol.  1999;16:190-7.

8.     Strauss RP, Resnick SD.  Pulsed dye laser therapy for port-wine stains in children:  psychosocial and ethical issues.  J Pediatr.  1993;122:505-10.

9.     Augustin M, Zschocke I, Wiek K, Peschen M, Vanscheidt W.  Psychosocial stress of patients with port wine stains and expectations of dye laser treatment.  Dermatology.  1998;197:353-60.

10.   Gupta G, Gilsland D.  A prospective study of the impact of laser treatment on vascular lesions.  Br J Dermatol.  2000;143:356-9.

11.   Lanigan SW.  Acquired port wine stains:  clinical and psychological assessment and response to pulsed dye laser therapy.  Br J Dermatol.  1997;137:86-90.

12.   Troilius A, Wrangsjo B, Ljunggren B.  Patients with port-wine stains and their psychosocial reactions after photothermolytic treatment.  Dermatol Surg.  2000;26:190-6.

13.   Kunkel EJ, Zager RP, Hausman CL, Rabinowitz LG.  An interdisciplinary group for parents of children with hemangiomas.  Psychosomatics.  1994;35:524-32.

14.   Dieterich-Miller CA, Safford PL.  Psychosocial development of children with hemangiomas:  home, school, health care collaberation.  Child Health Care.  1992;21:84-9.

15.   Dietrich-Miller CA, Cohen BA, Liggett J.  Behavioral adjustment and self-concept of young children with hemangiomas.  Pediatr Dermatol.  1992;9:241-5.

16.   Burstein FD, Simms C, Cohen SR, Williams JK, Paschal M.  Intralesional laser therapy of extensive hemangiomas in 100 consecutive pediatric patients.  Ann Plast Surg.  2000;44:188-94.

17.   Bennett ML, Fleischer AB Jr, Chamlin SL, Frieden IJ.  Oral corticosteroid use is effective for cutaneous hemangiomas:  an evidence-based evaluation.  Arch Dermatol.  2001;137:1208-13.

18.   Soumekh B, Adams GL, Shapiro RS.  Treatment of head and neck hemangiomas with recombinant interferon alpha 2b.  Ann Otol Rhinol Laryngol.  1996;105:201-6.

19.   Sarihan H, Mocan H, Yildiz K, Abes M, Akyazici R.  A new treatment with bleomycin for complicated cutaneous hemangioma in children.  Eur J Pediatr Surg.  1997;7:158-62.

20.   Margileth AM, Museles M.  Cutaneous hemangiomas in children:  diagnosis and conservative management.  JAMA.  1965;194:523-6.

21.   Williams EF 3rd, Stanislaw P, Dupree M, Mourtzikos K, Mihm M, Shannon L.  Hemangiomas in infants and children.  An algorithm for intervention.  Arch Facial Plast Surg.  2000;2:103-11.

22.   Mulliken JB, Glowacki J.  Hemangiomas and vascular malformations in infants and children:  a classification based on endothelial characteristics.  Plast Reconstr Surg.  1982;69:412-22.

23.   Finn MC, Glowacki J, Mulliken JB.  Congenital vascular lesions:  clinical application of a new classification.  J Pediatr Surg.  1983;18:894-900.



Table 1:  Psychological Profile of Hemangioma Patients and Their Family Involving the Emotional Aspects of the Disease
 

SA*

A

NC

D

SD

The presence of the lesion caused fears and anxieties in you and/or your family.

17

(43.6%)

17 (43.6%)

0

(0%)

4

(10.3%)

1

(2.6%)

The information you received from your primary care physician helped alleviate these fears and anxieties.

6

(15.4%)

17

(43.6%)

3

(7.7%)

8

(20.5%)

5

(12.8%)

The fears and/or anxieties decreased after you visited the Vascular Birthmark Clinic.

20

(51.3%)

16

(41.0%)

1

(2.6%)

2

(5.1%)

0

(0%)

I encountered critical comments, negative stares and/or opinions from others regarding my child’s birthmark.

26

(66.7%)

9

(23.1%)

1

(2.6%)

2

(5.1%)

1

(2.6%)

This experience motivated me to find a specialty clinic.

20

(51.3%)

9

(23.1%)

3

(7.7%)

2

(5.1%)

5

(12.8%)

Fears and anxieties eliminated or decreased after your visit to the Vascular Birthmark Clinic.

17

(43.6%)

20

(51.3%)

1

(2.6%)

1

(2.6%)

0

(0%)

The birthmark had a negative emotional effect on you and your family.

7

(17.9%)

14

(35.9%)

3

(7.7%)

11

(28.2%)

4

(10.3%)

The birthmark had a negative emotional effect on your child who is affected by the birthmark.

4

(10.3%)

3

(7.7%)

7

(17.9%)

17

(43.6%)

8

(20.5%)

The birthmark adversely interfered with normal childhood activities such as attending parties, play-time sessions, day care, etc.

3

(7.7%)

4

(10.3%)

5

(12.8%)

17

(43.6%)

11

(28.2%)

Were you ever accused of child abuse because of the birthmark?

10(YES)

(25.6%)

29(NO)

(74.4%)

     

*SA = Strongly Agree, A = Agree, NC = No Change, D = Disagree, SD = Strongly Disagree

Table 2:  Psychological Profile of Hemangioma Patients and Their Family After Treatment
 

SA*

A

NC

D

SD

A change was noted in my child’s self-esteem following treatment of the lesion.

5

(12.8%)

4

(10.2%)

20

(51.2%)

7

(17.9%)

3

(7.7%)

        Less embarrassed:

4

(10.2%)

4

(10.2%)

21

(53.8%)

8

(20.5%)

2

(5.1%)

        Less avoidance of social gatherings:

5

(12.8%)

4

(10.2%)

18

(46.1%)

9

(23.1%)

3

(7.7%)

You had an improved relationship with the child.

3

(7.7%)

4

(10.2%)

26

(66.7%)

4

(10.2%)

2

(5.1%)

Overall, the emotional removal is as important as the physical removal of the birthmark.

26

(66.7%)

11

(28.2%)

1

(2.6%)

1

(2.6%)

0

(0%)

*SA = Strongly Agree, A = Agree, NC = No Change, D = Disagree, SD = Strongly Disagree.