23
1. Noonan JA, Ehmke DA. Associated noncardiac malformations in children with congenital heart disease. J Pediatr 1963 63: 468-70. 2. Noonan JA. Hypertelorism with Turner phenotype. Am J Dis Child
1968; 116: 373-80. 3. Collins E, Turner G. The Noonan syndrome— a review of the clinical and genetic features of 27 cases J Pediatr 1973; 83: 941-50. 4. Nora JJ, Nora AH, Sinha AK, Spangler RD, Lubs HA. The Ullrich-Noonan syndrome (Turner phenotype). Am J Dis Child 1973; 127: 48-55. 5 Calvert GD. Trimethylaminuria and inherited Noonan’s syndrome. Lancet 1973; i: 320-21. 6. Witt DR, McGillivray BC, Allanson JE, et al. Bleeding diathesis in Noonan syndrome: a common association. Am J Med Genet 1988; 31:
305-17. 7. Sharland M, Patton MA, Talbot S, Chitolie A, Bevan DH
Coagulation-
factor deficiencies and abnormal bleeding in Noonan’s syndrome. Lancet 1992; 339: 19-21. 8. Sanchez-Cascos A. The Noonan syndrome. Eur Heart J 1983; 4: 223-29. 9. Sharland M, Burch M, McKenna WM, Patton MA. A clinical study of Noonan syndrome. Arch Dis Child 1992; 67: 178-83. 10. Pearl W. Cardiovascular anomalies in Noonan’s syndrome. Chest 1977; 71: 677-79. 11. Lin AE, Garver KL, Allanson J. Aortic-root dilatation in Noonan’s sydrome. N Engl J Med 1987; 317: 1668-669. 12. Donnenfeld AE, Nazir MA, Sindoni F, Librizzi RJ. Prenatal sonographic documentation of cystic hygroma regression in Noonan syndrome. Am J Med Genet 1991; 39: 461-65. 13. Allanson JE, Hall JG, Hughes HE, Preus M, Witt RD. Noonan syndrome: the changing phenotype. Am J Med Genet 1985; 21: 507-14. 14. Mendez HMM, Opitz JM. Noonan syndrome: a review Am J Med Genet 1985; 21: 493-506. 15. Theintz G, Savage MO. Growth and pubertal development in five boys with Noonan’s syndrome. Arch Dis Child 1982; 57: 13-17. 16. Money J, Kalus ME. Noonan’s syndrome. IQ and specific diabilities. Am J Dis Child 1979; 133: 846-50. 17. Pierini DO, Pierini AM. Keratosis pilaris atrophicans facei (ulerythema ophryogenes): a cutaneous marker in the Noonan syndrome. Br J Dermatol 1979; 100: 409-16. 18. Reynolds JF, Neri G, Herrmann JP, et al. New multiple congenital abnormalities/mental retardation syndrome with cardio-faciocutaneous involvement-the CFC syndrome. Am J Med Genet 1986; 25: 413-27. 19. Opitz JM, Weaver DD. Editorial comment: the neurofibromatosisNoonan syndrome. Am J Med Genet 1985; 21: 477-90. 20. Baraitser M, Patton MA. A Noonan-like short stature syndrome with sparse hair. J Med Genet 1986; 23: 161-64. 21. Verloes A, Le Merrer M, Soyeur D, et al. CFC syndrome: a syndrome distinct from Noonan syndrome. Ann Genet 1986; 31: 230-34. 22. Fryer AE, Holt PJ, Hughes HE. The cardio-facio cutaneous (CFC) syndrome and Noonan syndrome: are they the same? Am J Med Genet 1991; 38: 548-51. 23. Watson GH. Pulmonary stenosis, café-au-lait spots and dull intelligence. Arch Dis Child 1967; 42: 303-07. 24. Allanson J, Upadhyaya M, Watson GH, et al. Watson syndrome: is it a subtype of type 1 neurofibromatosis? J Med Genet 1991; 28: 752-56. 25. Stem HJ, Saal H, Lee JS, et al. Clinical variability of type I neurofibromatosis: is there a neurofibromatosis-Noonan syndrome? J Med Genet 1992; 29: 184-87. 26. Allanson JE, Hall JG, Van Allen MI. Noonan phenotype associated with neurofibromatosis. Am J Med Genet 1985; 21: 457-62. 27. Abuelo DN, Meryash DL. Neurofibromatosis with fully expressed Noonan syndrome. Am J Med Genet 1988; 29: 937-41. 28. Sharland M, Taylor R, Patton MA, Jeffery S. Absence of linkage of Noonan syndrome to the neurofibromatosis type I locus. J Med Genet 1992; 29: 188-90.
Outpatients on tape One of the most important skills for a clinician is the ability to communicate sympathetically and clearly with the patient, and where appropriate, with the patient’s relatives and friends. We are rightly humbled when we consider how little many patients understand of their consultations with us.1 Those teaching undergraduates are trying to improve their students’ communication skills, but little has been done to find ways of helping patients retain important information. Patients are often frightened and worried by a visit to
the doctor, for all sorts of reasons, and consequently the "take-home" message that the doctor intended is often incompletely understood or misinterpreted. Too few of us appear to be addressing this issue directly. Those who have include the Tattersalls R2 and M,3 who suggest sending copies of clinic letters to patients, and Butt,4who suggests audiotaping of consultations. The latter approach, which has the advantage of allowing patients to hear the whole interview again at home, was adopted in two studies of cancer patients with considerable success.56 Little has been published by paediatricians on this subject although communication, in many cases via third parties, is more important in this specialty than in most. Many paediatricians provide families with general educational material but few offer anything that relates to the individual child. Paediatric consultations bring additional troubles for the adult, usually the mother, who accompanies the child. She will be keeping an eye on the patient and any siblings to ensure good behaviour, and this makes it impossible for her to give her full attention to the conversation. Moreover, she will usually need to relay accurate
information back to the father. Rylance7 has now tackled these obstacles to paediatric consultations. Over a four-month period he offered families tape recordings of outpatient consultations. There were 400 visits during this time to a mixture of specialist and general clinics. After permission was sought the consultation was taped in 376 cases. Taping was impracticable in 24 cases because of language difficulties, despite the presence of an interpreter; presumably these 24 were getting even less from the consultation than most families. 304 parents wanted to take the tape home and 289 returned the postconsultation questionnaire. All but 3 of these tapes were listened to by parents and over half were additionally listened to by grandparents.Almost all the tapes were said to be helpful, and in two-thirds of
helpful. surprisingly few technical hitches with tape recording and the costs were low; under 2% of cassettes were not returned. Another approach would be to ask parents to bring a cassette with them if they wished the consultation to be taped. The real test of this approach is whether parents recall information more accurately or change their action as a result of the tape, and Rylance freely admits that he does not know. cases
very
There were
1. Tuckett D, Williams A.
Approaches to the measurement of explanation and information giving in medical consultations: a review of empirical studies. Soc Sci Med 1984; 18: 571-80. 2. Tattersall R. Writing for and to patients. Diab Med 1990; 7: 917-19. 3. Damian D, Tattersall MHN. Letters to patients: improving communication in cancer care. Lancet 1991; 338: 923-25. 4. Butt HR. A method for better physician-patient communication. Ann Intern Med 1977; 86: 478-80. 5. Reynolds PM, Sanson-Fisher RW, Desmond Poole A, et al. Cancer and communications: information giving in an oncology clinic. BMJ 1981; 282: 1449-51. 6. Hogbin B, Fallowfield L. Getting it taped: the ’bad news’ consultation with cancer patients. Br J Hosp Med 1989; 41: 330-33. 7. Rylance G. Should audio recordings of outpatient consultations be presented to patients. Arch Dis Child 1992; 67: 622-24.
1. Noonan JA, Ehmke DA. Associated noncardiac malformations in children with congenital heart disease. J Pediatr 1963 63: 468-70. 2. Noonan JA. Hypertelorism with Turner phenotype. Am J Dis Child
1968; 116: 373-80. 3. Collins E, Turner G. The Noonan syndrome— a review of the clinical and genetic features of 27 cases J Pediatr 1973; 83: 941-50. 4. Nora JJ, Nora AH, Sinha AK, Spangler RD, Lubs HA. The Ullrich-Noonan syndrome (Turner phenotype). Am J Dis Child 1973; 127: 48-55. 5 Calvert GD. Trimethylaminuria and inherited Noonan’s syndrome. Lancet 1973; i: 320-21. 6. Witt DR, McGillivray BC, Allanson JE, et al. Bleeding diathesis in Noonan syndrome: a common association. Am J Med Genet 1988; 31:
305-17. 7. Sharland M, Patton MA, Talbot S, Chitolie A, Bevan DH
Coagulation-
factor deficiencies and abnormal bleeding in Noonan’s syndrome. Lancet 1992; 339: 19-21. 8. Sanchez-Cascos A. The Noonan syndrome. Eur Heart J 1983; 4: 223-29. 9. Sharland M, Burch M, McKenna WM, Patton MA. A clinical study of Noonan syndrome. Arch Dis Child 1992; 67: 178-83. 10. Pearl W. Cardiovascular anomalies in Noonan’s syndrome. Chest 1977; 71: 677-79. 11. Lin AE, Garver KL, Allanson J. Aortic-root dilatation in Noonan’s sydrome. N Engl J Med 1987; 317: 1668-669. 12. Donnenfeld AE, Nazir MA, Sindoni F, Librizzi RJ. Prenatal sonographic documentation of cystic hygroma regression in Noonan syndrome. Am J Med Genet 1991; 39: 461-65. 13. Allanson JE, Hall JG, Hughes HE, Preus M, Witt RD. Noonan syndrome: the changing phenotype. Am J Med Genet 1985; 21: 507-14. 14. Mendez HMM, Opitz JM. Noonan syndrome: a review Am J Med Genet 1985; 21: 493-506. 15. Theintz G, Savage MO. Growth and pubertal development in five boys with Noonan’s syndrome. Arch Dis Child 1982; 57: 13-17. 16. Money J, Kalus ME. Noonan’s syndrome. IQ and specific diabilities. Am J Dis Child 1979; 133: 846-50. 17. Pierini DO, Pierini AM. Keratosis pilaris atrophicans facei (ulerythema ophryogenes): a cutaneous marker in the Noonan syndrome. Br J Dermatol 1979; 100: 409-16. 18. Reynolds JF, Neri G, Herrmann JP, et al. New multiple congenital abnormalities/mental retardation syndrome with cardio-faciocutaneous involvement-the CFC syndrome. Am J Med Genet 1986; 25: 413-27. 19. Opitz JM, Weaver DD. Editorial comment: the neurofibromatosisNoonan syndrome. Am J Med Genet 1985; 21: 477-90. 20. Baraitser M, Patton MA. A Noonan-like short stature syndrome with sparse hair. J Med Genet 1986; 23: 161-64. 21. Verloes A, Le Merrer M, Soyeur D, et al. CFC syndrome: a syndrome distinct from Noonan syndrome. Ann Genet 1986; 31: 230-34. 22. Fryer AE, Holt PJ, Hughes HE. The cardio-facio cutaneous (CFC) syndrome and Noonan syndrome: are they the same? Am J Med Genet 1991; 38: 548-51. 23. Watson GH. Pulmonary stenosis, café-au-lait spots and dull intelligence. Arch Dis Child 1967; 42: 303-07. 24. Allanson J, Upadhyaya M, Watson GH, et al. Watson syndrome: is it a subtype of type 1 neurofibromatosis? J Med Genet 1991; 28: 752-56. 25. Stem HJ, Saal H, Lee JS, et al. Clinical variability of type I neurofibromatosis: is there a neurofibromatosis-Noonan syndrome? J Med Genet 1992; 29: 184-87. 26. Allanson JE, Hall JG, Van Allen MI. Noonan phenotype associated with neurofibromatosis. Am J Med Genet 1985; 21: 457-62. 27. Abuelo DN, Meryash DL. Neurofibromatosis with fully expressed Noonan syndrome. Am J Med Genet 1988; 29: 937-41. 28. Sharland M, Taylor R, Patton MA, Jeffery S. Absence of linkage of Noonan syndrome to the neurofibromatosis type I locus. J Med Genet 1992; 29: 188-90.
Outpatients on tape One of the most important skills for a clinician is the ability to communicate sympathetically and clearly with the patient, and where appropriate, with the patient’s relatives and friends. We are rightly humbled when we consider how little many patients understand of their consultations with us.1 Those teaching undergraduates are trying to improve their students’ communication skills, but little has been done to find ways of helping patients retain important information. Patients are often frightened and worried by a visit to
the doctor, for all sorts of reasons, and consequently the "take-home" message that the doctor intended is often incompletely understood or misinterpreted. Too few of us appear to be addressing this issue directly. Those who have include the Tattersalls R2 and M,3 who suggest sending copies of clinic letters to patients, and Butt,4who suggests audiotaping of consultations. The latter approach, which has the advantage of allowing patients to hear the whole interview again at home, was adopted in two studies of cancer patients with considerable success.56 Little has been published by paediatricians on this subject although communication, in many cases via third parties, is more important in this specialty than in most. Many paediatricians provide families with general educational material but few offer anything that relates to the individual child. Paediatric consultations bring additional troubles for the adult, usually the mother, who accompanies the child. She will be keeping an eye on the patient and any siblings to ensure good behaviour, and this makes it impossible for her to give her full attention to the conversation. Moreover, she will usually need to relay accurate
information back to the father. Rylance7 has now tackled these obstacles to paediatric consultations. Over a four-month period he offered families tape recordings of outpatient consultations. There were 400 visits during this time to a mixture of specialist and general clinics. After permission was sought the consultation was taped in 376 cases. Taping was impracticable in 24 cases because of language difficulties, despite the presence of an interpreter; presumably these 24 were getting even less from the consultation than most families. 304 parents wanted to take the tape home and 289 returned the postconsultation questionnaire. All but 3 of these tapes were listened to by parents and over half were additionally listened to by grandparents.Almost all the tapes were said to be helpful, and in two-thirds of
helpful. surprisingly few technical hitches with tape recording and the costs were low; under 2% of cassettes were not returned. Another approach would be to ask parents to bring a cassette with them if they wished the consultation to be taped. The real test of this approach is whether parents recall information more accurately or change their action as a result of the tape, and Rylance freely admits that he does not know. cases
very
There were
1. Tuckett D, Williams A.
Approaches to the measurement of explanation and information giving in medical consultations: a review of empirical studies. Soc Sci Med 1984; 18: 571-80. 2. Tattersall R. Writing for and to patients. Diab Med 1990; 7: 917-19. 3. Damian D, Tattersall MHN. Letters to patients: improving communication in cancer care. Lancet 1991; 338: 923-25. 4. Butt HR. A method for better physician-patient communication. Ann Intern Med 1977; 86: 478-80. 5. Reynolds PM, Sanson-Fisher RW, Desmond Poole A, et al. Cancer and communications: information giving in an oncology clinic. BMJ 1981; 282: 1449-51. 6. Hogbin B, Fallowfield L. Getting it taped: the ’bad news’ consultation with cancer patients. Br J Hosp Med 1989; 41: 330-33. 7. Rylance G. Should audio recordings of outpatient consultations be presented to patients. Arch Dis Child 1992; 67: 622-24.
