Acta Pædiatrica ISSN 0803-5253
EDITORIAL DOI:10.1111/apa.12794
Educating caregivers about the natural history of infantile hemangiomas Infantile hemangiomas (IHs) are the commonest benign tumour in infancy affecting approximately 5% of the population. Their rapid growth and appearance generally induce significant anxiety for caregivers and healthcare professionals. Despite this, in a minority of cases, medical intervention is actually warranted: when an IH becomes problematic by ulcerating, compromising the airway or vision, causing high-output cardiac failure, or if it threatens to cause permanent disfigurement. In the vast majority of cases, IHs are not a problem and may be managed conservatively with appropriate parental education and reassurance. Partly due to their striking appearance, nonproblematic IHs can cause significant parental anxiety and distress (1,2). Because of this, the physician may feel pressured to take action and recommend a medical or surgical intervention. However, for nonproblematic IHs, it is reasonable to educate the caregivers on the natural history of IHs. This would include a discussion of the natural course of IHs, potential complications, types of therapy commonly used for problematic IHs, and emotional support. After the initial visit, frequent monitoring of the IH during the proliferative phase is prudent. Measurements and serial photography to objectively document changes in the IH are also helpful to parents and providers when there is a question of IH evolution. Because of the difficulty in conceptualising IH involution without intervention, the counterproductive and frightening images that may be found on the Internet, and the lack of realistic depictions of IH natural history, we developed and subsequently formally investigated the use of an audiovisual presentation on the natural progression of untreated IHs to alleviate parental anxiety associated with nonintervention of nonproblematic IHs. This questionnaire-based clinical study was approved by the Human Investigation Committee at Yale University School of Medicine (Institutional Review Board no. HIC1001008234). Study enrolment occurred between February 2010 and July 2010. Families presented to the Yale Pediatric Vascular Anomalies Clinic for initial evaluation for IHs. Prior to this visit, participants had been informed of a probable diagnosis of IH from their infant’s referring physician, who was either a paediatrician or a dermatologist. Upon enrolment, after the diagnosis was confirmed and prior to any discussion with a paediatric dermatologist, parents received a multiplechoice knowledge test to establish baseline understanding of IH. Next, parents viewed a 7-minute computerised PowerPoint slide show presented and narrated in the office by a medical student. After the audiovisual presen-
ª2014 Foundation Acta Pædiatrica. Published by John Wiley & Sons Ltd 2015 104, pp. 9–11
tation, parents repeated the knowledge test. Lastly, the parents completed a multiple-choice survey to evaluate their satisfaction with the educational intervention. If both parents were present, each parent completed a separate survey. The knowledge test and survey were developed specifically for this study. The slide show was taken from a PowerPoint presentation used for several years in our clinic that included montages of images of several IH variants including localised and segmental; superficial and deep; and scalp, trunk, extremity and facial lesions, and was enhanced to include basic information on IH. Each montage demonstrated the natural progression of the IH over the course of months to years. In two of the cases in which there was active intervention (oral steroids and surgery), the parents were informed of this verbally and by labelling on the image itself. Photograph montages from our presentation can be viewed online at http://www.dermatology.yale. edu/patient/Hemangioma.aspx. Thirty-two parents were recruited for the study. Prior to our education intervention, parents received a mean score of 72.7% on the 12-question multiple-choice knowledge test. After having participated in the educational presentation, their scores improved significantly to a mean of 94% (p < 0.0001). Many parents (41%) who participated in our study felt that they knew much about IHs prior to presenting to our clinic. The majority of parents (75%) who came to our clinic had researched IH on the Internet prior to their visit. Of the 24 parents who had read about IH on the Internet, only 34% felt that the Internet had educated them on their child’s hemangioma. And 56% of them believed that the information on the Internet caused them confusion and anxiety. After participating in our educational slide show and presentation, 97% of parents felt that they were informed about their child’s IH, and 96% felt comfortable with their child’s diagnosis. Additionally, 91% felt that the overall educational intervention decreased their anxiety towards their child’s IH. Even more (97%) felt that the pictures played a role in decreasing their anxiety. A small minority remained concerned about how the IH would affect their child’s emotional and physical development (3% and 6%, respectively), and if other children would make fun of their child’s IH (16%). Ninety-four percent of participants agreed that the educational intervention helped them understand possible treatment options for IH. Furthermore, after the tutorial, 94% of participants were willing to observe their child’s IH and not pursue immediate medical or surgical intervention.
9
Editorial
Nearly all the participants felt that this tutorial would be useful if it were available online. Parents of children with IHs often desire immediate information and can feel dissatisfied with the information, anticipatory guidance and support provided by their physicians (2). Because of this, they often turn to other sources for support and education, including friends, relatives and the Internet (2,3). This was substantiated in our study by the 75% of participants who researched IH on the Internet prior to coming to visit the paediatric dermatologist and by our participants’ high pretest scores on the baseline knowledge test. Minzer-Conzetti et al. (4) has shown that the Internet does not accurately portray the natural history of IHs and places more emphasis on severe cases of IH. Given these findings, it is not surprising for information from nonmedical professionals to be inadequate in helping parents navigate treatment options and in assuaging their anxiety towards their child’s IH. Our study presents evidence that educating parents through a slide show with photographs illustrating the natural progression of IHs during their initial visit with the paediatric dermatologist provides parents with the reassurance they require to be comfortable accepting a noninterventional approach. The recent discovery of beta-blockers such as oral propranolol as a relatively safe, effective treatment for problematic IH has generated much interest in the world of paediatrics and dermatology. Prior to this discovery, available therapies were not consistently effective and were rife with worrisome medical or surgical complications; as such, nonintervention was the preferred approach for nonproblematic IHs. Since the addition of beta-blockers to the IH therapeutic armamentarium, a lowering of the threshold for treating IH is gradually occurring. This study demonstrates that photograph montages depicting IH natural history provide a rapid and effective method for healthcare providers to reassure parents that simple observation of nonproblematic IHs is a rational approach. Parental education with careful observation until IH resolution is an attractive therapeutic option for several reasons. It is almost certainly the most cost-effective option and lacks the adverse effects that are possible with medical or surgical interventions. Furthermore, there is no strong or clear evidence that allowing nonproblematic IHs to naturally involute during the first 5 years of life is psychologically harmful to the patient (5). Several studies investigating the psychosocial impact of IH have shown that the brunt of the impact is on the parents and that children under 4-5 years of age are spared of any lasting psychosocial problems or behavioural issues (6–8). Moreover, it could be argued that aggressive treatment of IHs could generate more anxiety and stress towards the IH than judicious observation. Finally, we found that educating parents through a narrated slide show decreased parental anxiety associated with the IH. This study has several limitations, including its small sample size. Our study participants knew they were in a study and would be tested on their learning after the educational intervention with the identical test. This may
10
Editorial
have prompted the participants to pay more attention to the questions asked by the knowledge test. Additionally, our test and questionnaire were developed specifically for this study and have not been vetted for internal consistency or standardisation through a separate study. There was no control group without an intervention for comparison, and a multiarmed study would hold greater scientific merit. Finally, this study was conducted during a time when oral and topical beta-blockers were newly described off-label therapeutic options for IH. Parents and providers alike may be less inclined to observe an IH given the option to accelerate involution and prevent further growth and residual skin changes with beta-blocker therapy. The findings from our study show that parental education using serial images to show the natural involution of IHs is effective in assisting the physician in providing anticipatory guidance, reducing parental anxiety towards their child’s IH and encouraging acceptance of nonintervention. As we have for over a decade, we continue to employ this presentation in our examination rooms and show these photographs to caregivers who have a child with an infantile hemangioma. In addition to our photographs, the Hemangioma Investigator Group’s website also has published a series of images showing the resolution of IHs, mostly after medical or surgical intervention (9). Additionally, we have made our presentation available online at http://www.dermatology. yale.edu/patient/Hemangioma.aspx for general inquiries and to assist paediatric healthcare providers in educating parents about IHs.
Lucinda S. Liu1, Alexandra Sowa2, Richard J. Antaya ([email protected])3 1.Yale University School of Medicine, New Haven, CT, USA 2.New York University School of Medicine, New York, NY, USA 3.Departments of Dermatology and Pediatrics, Yale University School of Medicine, New Haven, CT, USA
References 1. Greig AV, Harris DL. A study of perceptions of facial hemangiomas in professionals involved in child abuse surveillance. Pediatr Dermatol 2003; 20: 1–4. 2. Tanner JL, Dechert MP, Frieden IJ. Growing up with a facial hemangioma: parent and child coping and adaptation. Pediatrics 1998; 101(3 Pt 1): 446–52. 3. Sandler G, Adams S, Taylor C. Paediatric vascular birthmarks– the psychological impact and the role of the GP. Aust Fam Physician 2009; 38: 169–71. 4. Minzer-Conzetti K, Garzon MC, Haggstrom AN, Horii KA, Mancini AJ, Morel KD, et al. Information about infantile hemangiomas on the Internet: how accurate is it? J Am Acad Dermatol 2007; 57: 998–1004. 5. Williams EF 3rd, Hochman M, Rodgers BJ, Brockbank D, Shannon L, Lam SM. A psychological profile of children with hemangiomas and their families. Arch Facial Plast Surg 2003; 5: 229–34.
ª2014 Foundation Acta Pædiatrica. Published by John Wiley & Sons Ltd 2015 104, pp. 9–11
Editorial
6. Dieterich-Miller CA, Cohen BA, Liggett J. Behavioral adjustment and self-concept of young children with hemangiomas. Pediatr Dermatol 1992; 9: 241–5. 7. Zweegers J, van der Vleuten CJ. The psychosocial impact of an infantile haemangioma on children and their parents. Arch Dis Child 2012; 97: 922–6.
ª2014 Foundation Acta Pædiatrica. Published by John Wiley & Sons Ltd 2015 104, pp. 9–11
Editorial
8. Kunkel EJ, Zager RP, Hausman CL, Rabinowitz LG. An interdisciplinary group for parents of children with hemangiomas. Psychosomatics 1994; 35: 524–32. 9. Group HI. Hemangioma Treatment 2013 [updated December 19, 2014]. Available from: http://hemangiomaeducation.org/ options.html. (accessed February 21, 2014).
11
Copyright of Acta Paediatrica is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
EDITORIAL DOI:10.1111/apa.12794
Educating caregivers about the natural history of infantile hemangiomas Infantile hemangiomas (IHs) are the commonest benign tumour in infancy affecting approximately 5% of the population. Their rapid growth and appearance generally induce significant anxiety for caregivers and healthcare professionals. Despite this, in a minority of cases, medical intervention is actually warranted: when an IH becomes problematic by ulcerating, compromising the airway or vision, causing high-output cardiac failure, or if it threatens to cause permanent disfigurement. In the vast majority of cases, IHs are not a problem and may be managed conservatively with appropriate parental education and reassurance. Partly due to their striking appearance, nonproblematic IHs can cause significant parental anxiety and distress (1,2). Because of this, the physician may feel pressured to take action and recommend a medical or surgical intervention. However, for nonproblematic IHs, it is reasonable to educate the caregivers on the natural history of IHs. This would include a discussion of the natural course of IHs, potential complications, types of therapy commonly used for problematic IHs, and emotional support. After the initial visit, frequent monitoring of the IH during the proliferative phase is prudent. Measurements and serial photography to objectively document changes in the IH are also helpful to parents and providers when there is a question of IH evolution. Because of the difficulty in conceptualising IH involution without intervention, the counterproductive and frightening images that may be found on the Internet, and the lack of realistic depictions of IH natural history, we developed and subsequently formally investigated the use of an audiovisual presentation on the natural progression of untreated IHs to alleviate parental anxiety associated with nonintervention of nonproblematic IHs. This questionnaire-based clinical study was approved by the Human Investigation Committee at Yale University School of Medicine (Institutional Review Board no. HIC1001008234). Study enrolment occurred between February 2010 and July 2010. Families presented to the Yale Pediatric Vascular Anomalies Clinic for initial evaluation for IHs. Prior to this visit, participants had been informed of a probable diagnosis of IH from their infant’s referring physician, who was either a paediatrician or a dermatologist. Upon enrolment, after the diagnosis was confirmed and prior to any discussion with a paediatric dermatologist, parents received a multiplechoice knowledge test to establish baseline understanding of IH. Next, parents viewed a 7-minute computerised PowerPoint slide show presented and narrated in the office by a medical student. After the audiovisual presen-
ª2014 Foundation Acta Pædiatrica. Published by John Wiley & Sons Ltd 2015 104, pp. 9–11
tation, parents repeated the knowledge test. Lastly, the parents completed a multiple-choice survey to evaluate their satisfaction with the educational intervention. If both parents were present, each parent completed a separate survey. The knowledge test and survey were developed specifically for this study. The slide show was taken from a PowerPoint presentation used for several years in our clinic that included montages of images of several IH variants including localised and segmental; superficial and deep; and scalp, trunk, extremity and facial lesions, and was enhanced to include basic information on IH. Each montage demonstrated the natural progression of the IH over the course of months to years. In two of the cases in which there was active intervention (oral steroids and surgery), the parents were informed of this verbally and by labelling on the image itself. Photograph montages from our presentation can be viewed online at http://www.dermatology.yale. edu/patient/Hemangioma.aspx. Thirty-two parents were recruited for the study. Prior to our education intervention, parents received a mean score of 72.7% on the 12-question multiple-choice knowledge test. After having participated in the educational presentation, their scores improved significantly to a mean of 94% (p < 0.0001). Many parents (41%) who participated in our study felt that they knew much about IHs prior to presenting to our clinic. The majority of parents (75%) who came to our clinic had researched IH on the Internet prior to their visit. Of the 24 parents who had read about IH on the Internet, only 34% felt that the Internet had educated them on their child’s hemangioma. And 56% of them believed that the information on the Internet caused them confusion and anxiety. After participating in our educational slide show and presentation, 97% of parents felt that they were informed about their child’s IH, and 96% felt comfortable with their child’s diagnosis. Additionally, 91% felt that the overall educational intervention decreased their anxiety towards their child’s IH. Even more (97%) felt that the pictures played a role in decreasing their anxiety. A small minority remained concerned about how the IH would affect their child’s emotional and physical development (3% and 6%, respectively), and if other children would make fun of their child’s IH (16%). Ninety-four percent of participants agreed that the educational intervention helped them understand possible treatment options for IH. Furthermore, after the tutorial, 94% of participants were willing to observe their child’s IH and not pursue immediate medical or surgical intervention.
9
Editorial
Nearly all the participants felt that this tutorial would be useful if it were available online. Parents of children with IHs often desire immediate information and can feel dissatisfied with the information, anticipatory guidance and support provided by their physicians (2). Because of this, they often turn to other sources for support and education, including friends, relatives and the Internet (2,3). This was substantiated in our study by the 75% of participants who researched IH on the Internet prior to coming to visit the paediatric dermatologist and by our participants’ high pretest scores on the baseline knowledge test. Minzer-Conzetti et al. (4) has shown that the Internet does not accurately portray the natural history of IHs and places more emphasis on severe cases of IH. Given these findings, it is not surprising for information from nonmedical professionals to be inadequate in helping parents navigate treatment options and in assuaging their anxiety towards their child’s IH. Our study presents evidence that educating parents through a slide show with photographs illustrating the natural progression of IHs during their initial visit with the paediatric dermatologist provides parents with the reassurance they require to be comfortable accepting a noninterventional approach. The recent discovery of beta-blockers such as oral propranolol as a relatively safe, effective treatment for problematic IH has generated much interest in the world of paediatrics and dermatology. Prior to this discovery, available therapies were not consistently effective and were rife with worrisome medical or surgical complications; as such, nonintervention was the preferred approach for nonproblematic IHs. Since the addition of beta-blockers to the IH therapeutic armamentarium, a lowering of the threshold for treating IH is gradually occurring. This study demonstrates that photograph montages depicting IH natural history provide a rapid and effective method for healthcare providers to reassure parents that simple observation of nonproblematic IHs is a rational approach. Parental education with careful observation until IH resolution is an attractive therapeutic option for several reasons. It is almost certainly the most cost-effective option and lacks the adverse effects that are possible with medical or surgical interventions. Furthermore, there is no strong or clear evidence that allowing nonproblematic IHs to naturally involute during the first 5 years of life is psychologically harmful to the patient (5). Several studies investigating the psychosocial impact of IH have shown that the brunt of the impact is on the parents and that children under 4-5 years of age are spared of any lasting psychosocial problems or behavioural issues (6–8). Moreover, it could be argued that aggressive treatment of IHs could generate more anxiety and stress towards the IH than judicious observation. Finally, we found that educating parents through a narrated slide show decreased parental anxiety associated with the IH. This study has several limitations, including its small sample size. Our study participants knew they were in a study and would be tested on their learning after the educational intervention with the identical test. This may
10
Editorial
have prompted the participants to pay more attention to the questions asked by the knowledge test. Additionally, our test and questionnaire were developed specifically for this study and have not been vetted for internal consistency or standardisation through a separate study. There was no control group without an intervention for comparison, and a multiarmed study would hold greater scientific merit. Finally, this study was conducted during a time when oral and topical beta-blockers were newly described off-label therapeutic options for IH. Parents and providers alike may be less inclined to observe an IH given the option to accelerate involution and prevent further growth and residual skin changes with beta-blocker therapy. The findings from our study show that parental education using serial images to show the natural involution of IHs is effective in assisting the physician in providing anticipatory guidance, reducing parental anxiety towards their child’s IH and encouraging acceptance of nonintervention. As we have for over a decade, we continue to employ this presentation in our examination rooms and show these photographs to caregivers who have a child with an infantile hemangioma. In addition to our photographs, the Hemangioma Investigator Group’s website also has published a series of images showing the resolution of IHs, mostly after medical or surgical intervention (9). Additionally, we have made our presentation available online at http://www.dermatology. yale.edu/patient/Hemangioma.aspx for general inquiries and to assist paediatric healthcare providers in educating parents about IHs.
Lucinda S. Liu1, Alexandra Sowa2, Richard J. Antaya ([email protected])3 1.Yale University School of Medicine, New Haven, CT, USA 2.New York University School of Medicine, New York, NY, USA 3.Departments of Dermatology and Pediatrics, Yale University School of Medicine, New Haven, CT, USA
References 1. Greig AV, Harris DL. A study of perceptions of facial hemangiomas in professionals involved in child abuse surveillance. Pediatr Dermatol 2003; 20: 1–4. 2. Tanner JL, Dechert MP, Frieden IJ. Growing up with a facial hemangioma: parent and child coping and adaptation. Pediatrics 1998; 101(3 Pt 1): 446–52. 3. Sandler G, Adams S, Taylor C. Paediatric vascular birthmarks– the psychological impact and the role of the GP. Aust Fam Physician 2009; 38: 169–71. 4. Minzer-Conzetti K, Garzon MC, Haggstrom AN, Horii KA, Mancini AJ, Morel KD, et al. Information about infantile hemangiomas on the Internet: how accurate is it? J Am Acad Dermatol 2007; 57: 998–1004. 5. Williams EF 3rd, Hochman M, Rodgers BJ, Brockbank D, Shannon L, Lam SM. A psychological profile of children with hemangiomas and their families. Arch Facial Plast Surg 2003; 5: 229–34.
ª2014 Foundation Acta Pædiatrica. Published by John Wiley & Sons Ltd 2015 104, pp. 9–11
Editorial
6. Dieterich-Miller CA, Cohen BA, Liggett J. Behavioral adjustment and self-concept of young children with hemangiomas. Pediatr Dermatol 1992; 9: 241–5. 7. Zweegers J, van der Vleuten CJ. The psychosocial impact of an infantile haemangioma on children and their parents. Arch Dis Child 2012; 97: 922–6.
ª2014 Foundation Acta Pædiatrica. Published by John Wiley & Sons Ltd 2015 104, pp. 9–11
Editorial
8. Kunkel EJ, Zager RP, Hausman CL, Rabinowitz LG. An interdisciplinary group for parents of children with hemangiomas. Psychosomatics 1994; 35: 524–32. 9. Group HI. Hemangioma Treatment 2013 [updated December 19, 2014]. Available from: http://hemangiomaeducation.org/ options.html. (accessed February 21, 2014).
11
Copyright of Acta Paediatrica is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
