PEDIATRIC PLENARY: Special Issues in Adherence for Children and Adolescents<br />Ruby FayorseyPediatric Clinical AdvisorIC...
Outline<br />Review ICAP adherence data for children<br />Review the pediatric adherence literature, compare LRS and HRS<b...
Cumulative Pediatric ART Enrollment, <br />as of June 2009, N=30,859<br /> n=3,460<br />n=3,217<br />n=3,604<br />n=5,600<...
Status of Pediatric ART Patients at ICAP HIV Care and Treatment Programs (June 2009 n=23,267*)<br />*Excludes Cote d’Ivoir...
Proportion of Pediatric Patients (5-15 yrs) with CD4 Count at Baseline, 6, and 12 months after ART Initiation (June 2009 P...
Cumulative Pediatric HIV Care Enrollment, <br />as of June 2009,  N =69,575<br />n=152<br />n=4,688<br />n=6,790<br />n=9,...
Adolescent Enrolled in Care: The Tip of the Iceberg?  (PLD June 2009 )<br />Total # of active children &lt; 19 years in PL...
SOCs and Pediatric Adherence<br />Provides more detailed assessment of adherence<br />Adherence to care and treatment<br /...
Significant Decrease in LTFU at the 13 ICAP Sites with SOCs Implementation, Sep 07 - Sep 08<br />P=0.003<br />Tene et al. ...
In Summary what does the ICAP Data tell us about Adherence in Children?<br />Programmatic data not individual data<br />Ad...
What do we know about Pediatric Adherence<br />Non-adherence is prevalent (20-50%), increases with age (Watson, 2000, Gibb...
Comparing Adherence in HRS and LRS (1)<br />Vreeman RC et al Ped Infect Dis J 2008, Simoni J M et al, Pediatrics , 2007<br />
Comparing Adherence in HRS and LRS (2)<br />Vreeman RC et al Ped Infect Dis J 2008, Simoni JM et al, Pediatrics 2007<br />
Comparing Adherence in HRS and LRS (3)<br />Vreeman RC, et al., Peds Infect Dis J 2008, Simoni JM, et al., Pediatrics 2007...
Comparing Adherence in HRS and LRS (4)<br />Vreeman RC et al Peds Infect Dis J 2008, Simoni JM et al, Pediatrics 2007<br />
Barriers Reported by Adolescents <br />VAS to assess adherence in adolescents in Uganda: 49% reported missing a dose in th...
What About Disclosure and Adherence?<br />Inconsistent relationship between disclosure and  adherence in HRS,  most studie...
Why is Pediatric Adherence Difficult?<br />
Multiple Factors Affect Adherence and Change Overtime<br />
Given all the  factors that threaten  adherence how can we support and promote adherence in children and adolescents ?<br />
Developmental Approach to Pediatric Adherence<br />
Developmental Characteristics Affecting  Adherence<br />
Adherence Cascade<br />CHILD<br /> EDUCATE  <br />MONITOR<br />                CARE   &TREATMENT<br />  MEASURE<br />INTER...
Adherence Cascade<br />Health Care System/Provider<br />   EDUCATE <br />MONITOR<br />           CARE & TREATMENT<br />INT...
What are some of the Adherence Challenges you can Expect?<br />
How would you Provide Adherence to Care Support?<br />
How would you provide Adherence Education and  Preparation<br />
Adherence Preparation Strategies<br />
Other  Adherence Preparation Tools<br />
Adherence Assessment <br />Caregiver/Self-report is the least expensive and most frequently used (tends to over estimate)<...
Strategies Evaluated in the Literature to Improve Adherence in Children <br />Few strategies for improving adherence in ch...
Strategies and Interventions to  Facilitate  Adherence (1)<br />Child/Caregiver and Family<br />Intensive education before...
Strategies and Interventions to  Facilitate  Adherence (2)<br />Health care system<br />Establish long term relationship w...
Strategies and Interventions to  Facilitate  Adherence (3)<br />Medication<br />Reduce number of pills (FDC) and frequency...
Summary<br />Adherence in children in LRS is equal or may be better  than children in HRS<br />Adherence estimates vary de...
MURAKOZE<br />
S2S-Adherence Support for Adolescents<br />Kenya-Pediatric Appointment and Adherence Systems<br /> Ethiopia- MDT Approach ...
Supporting Sustainable Adherence to HIV Prevention, Care & Treatment<br />ICAP Technical Workshop<br />October 19-22, 2009...
Adolescents in Care at Tygerberg Children’s Hospital<br />Currently a total of 60 (25%) of the approximately 240 children ...
Survey of Adolescent Informed Adolescent Program<br />Prior to establishing the adolescent clinic, staff conducted a surve...
Ensure that patients become well-adjusted adolescents
Allow for a less abrupt transition into adult care
Provide a holistic approach geared at adolescents, the issues they are faced with and providing tools and support structur...
Support and education for parents of HIV positive adolescents</li></ul>40<br />
Activities to Support Adolescent Adherence<br />One on one sessions with a Social Worker<br />Groups for adolescents at th...
Adherence to medication
Arts and crafts
Life skills/caring for yourself
School-related issues
Family issues</li></ul>41<br />
Support for Caregivers<br />Support group for caregiver started in June 2008<br /><ul><li>ARV treatment
Disclosure
Sexuality and sexual abuse
Financial issues/fund raising
Arts and crafts</li></ul>“I like the way the information was delivered. How to teach children about HIV/AIDS and the impor...
Tools and on-site Capacity Building Support<br />Clinical mentorship to social workers and lay counselors at CHC and ART c...
Importance of including lay counselors and social workers in MDT</li></ul>Promotion of youth-friendly educational material...
Soccer and HIV
Hero book</li></ul>43<br />
Thanks to:<br />44<br />Sr. Vivian O’Brian<br />Sonja Oberholse<br />Staff of the Tygerberg Family Clinic<br />Patients an...
PEDIATRIC APPOINTMENT & ADHERENCE SYSTEMS<br />Frida Njogu, MD, MPH<br />ICAP Kenya<br />Supporting Sustainable Adherence ...
Challenges in Pediatric Appointments, Adherence and Retention<br />Integration of other child survival mechanisms e.g. IMC...
Systems To Support Pediatric Adherence<br />Appointment system<br />Diary integrates appointments and assessment<br />Inte...
Appointment Diary<br />
Integration...<br />Dedicated peds clinic day <br />Same day appointments for mother/caretaker and family (family care cli...
Colour Coding System<br />Rationale: elderly caregivers<br />Early stages of pilot <br />SOP developed<br />Waterproof col...
Colour Coding<br />
Plans<br />Further and more complete integration of services<br />Roll out Color Coding system<br />Treatment Supporter sy...
Collaboration BetweenCU-ICAP Ethiopia and The Psychosocial Unit at Adama Hospital<br />Yoseph GutemaPediatric/PMTCT Adviso...
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Adherence for Pediatrics: Plenary

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Adherence for Pediatrics: Plenary

  1. 1. PEDIATRIC PLENARY: Special Issues in Adherence for Children and Adolescents<br />Ruby FayorseyPediatric Clinical AdvisorICAP-NY<br />Supporting Sustainable Adherence to HIV Prevention, Care & Treatment<br />ICAP Technical Workshop<br />October 19-22, 2009Kigali, Rwanda<br />
  2. 2. Outline<br />Review ICAP adherence data for children<br />Review the pediatric adherence literature, compare LRS and HRS<br />Developmental approach to adherence to care and treatment in pediatrics<br />Country Examples<br />S2S<br />Kenya<br />Ethiopia<br />
  3. 3. Cumulative Pediatric ART Enrollment, <br />as of June 2009, N=30,859<br /> n=3,460<br />n=3,217<br />n=3,604<br />n=5,600<br />n=2,570<br />n=874<br />n=4,047<br />n=1,590<br />n=4,161<br />n=30,859<br />n=1,651<br />n=85<br />% pediatric patients on ART<br />
  4. 4. Status of Pediatric ART Patients at ICAP HIV Care and Treatment Programs (June 2009 n=23,267*)<br />*Excludes Cote d’Ivoire, Swaziland and Zambia due to incomplete data on status variables.<br />** Includes patients who transferred out while on ART.<br />
  5. 5. Proportion of Pediatric Patients (5-15 yrs) with CD4 Count at Baseline, 6, and 12 months after ART Initiation (June 2009 PLD)<br />
  6. 6. Cumulative Pediatric HIV Care Enrollment, <br />as of June 2009, N =69,575<br />n=152<br />n=4,688<br />n=6,790<br />n=9,654<br />n=3,404<br />n=1,478<br />n=3,786<br />n=16,355<br />n=5,830<br />n=10,411<br />n=69,575<br />n=7,027<br />% pediatric patients in HIV care<br />
  7. 7. Adolescent Enrolled in Care: The Tip of the Iceberg? (PLD June 2009 )<br />Total # of active children &lt; 19 years in PLD on ART= 4428<br />Total/% 0-5 yrs= 2302 (52%)<br />Total/% 6-10yrs=1179 (26%)<br />Total/% 11-19 yrs=947 (22%)<br />Includes data from Rwanda, Kenya, Tz and Mz, n=98 sites<br />
  8. 8. SOCs and Pediatric Adherence<br />Provides more detailed assessment of adherence<br />Adherence to care and treatment<br />% of children reporting taking &gt; 90% of medication<br />% of children with documented contact with HCW within 2 weeks of missed appointment<br />% of children with CD4 done every six months<br />Root case analysis <br />
  9. 9. Significant Decrease in LTFU at the 13 ICAP Sites with SOCs Implementation, Sep 07 - Sep 08<br />P=0.003<br />Tene et al. Implementers Meeting 2009<br />
  10. 10. In Summary what does the ICAP Data tell us about Adherence in Children?<br />Programmatic data not individual data<br />Adherence to care not treatment<br />Clinic attendance, lost to F/U, death and stopped ART<br />Indirect measures of adherence (CD4 change over time)<br />Increasing population of perinatally infected adolescents<br /> Importance of SOCs to complement routinely collected data<br />
  11. 11. What do we know about Pediatric Adherence<br />Non-adherence is prevalent (20-50%), increases with age (Watson, 2000, Gibb 2003, Mellins 2004, Williams 2006, Martin 2007)<br />Range of factors that influence adherence (Reddington 2000, Pontalli 2001, Steele 2003, Williams 2006, Mellins 2006, Barack 2007)<br />Child<br />Caregiver/family<br />Medication Related Factors<br />Healthcare system (Provider-patient/family relationships)<br />Structural/Community<br />
  12. 12. Comparing Adherence in HRS and LRS (1)<br />Vreeman RC et al Ped Infect Dis J 2008, Simoni J M et al, Pediatrics , 2007<br />
  13. 13. Comparing Adherence in HRS and LRS (2)<br />Vreeman RC et al Ped Infect Dis J 2008, Simoni JM et al, Pediatrics 2007<br />
  14. 14. Comparing Adherence in HRS and LRS (3)<br />Vreeman RC, et al., Peds Infect Dis J 2008, Simoni JM, et al., Pediatrics 2007<br />
  15. 15. Comparing Adherence in HRS and LRS (4)<br />Vreeman RC et al Peds Infect Dis J 2008, Simoni JM et al, Pediatrics 2007<br />
  16. 16. Barriers Reported by Adolescents <br />VAS to assess adherence in adolescents in Uganda: 49% reported missing a dose in the past 30 days<br />Age 12-18<br />Barriers cited were:<br />Forgetting 39%<br />Staying away from home 30%<br />Sleeping through dose time 22.5%<br />Side effect of medication 10%<br />Focus group sessions with adolescents in Western Kenya<br />Age10-16<br />Barriers to adherence<br />Just forgetting<br />Delaying dose because of school or work<br />Tired of taking medications<br />Not having food<br />Travelling to the clinic to get meds<br />Needing to hide the meds from others in the house hold, neighborhood and school<br />Bakeera-Kitaka S et al. IAS 2009 Vreeman R et al. IAS 2009<br />
  17. 17. What About Disclosure and Adherence?<br />Inconsistent relationship between disclosure and adherence in HRS, most studies are confounded by age<br />Studies in LRS seem to suggest improved adherence with disclosure of HIV status<br />In Kenya, N=37(Akolo , IAS 2009)<br />&lt; 12 years not disclosed to (90-100% adherence)<br />Early disclosure with ongoing support from parents/guardians (90-100% adherence)<br />Late disclosure with ongoing support from family (80-89% adherence)<br />In Uganda, N=42<br />Complete disclosure and strong parental relationships were related to good adherence (Bikaako-Kajura 2006)<br />Study from Mulago, N=170<br />Disclosure of HIV diagnosis to only caregiver associated with low adherence (Nabueera-Barungi 2007)<br />
  18. 18. Why is Pediatric Adherence Difficult?<br />
  19. 19. Multiple Factors Affect Adherence and Change Overtime<br />
  20. 20. Given all the factors that threaten adherence how can we support and promote adherence in children and adolescents ?<br />
  21. 21. Developmental Approach to Pediatric Adherence<br />
  22. 22. Developmental Characteristics Affecting Adherence<br />
  23. 23. Adherence Cascade<br />CHILD<br /> EDUCATE <br />MONITOR<br /> CARE &TREATMENT<br /> MEASURE<br />INTERVENE<br />PARENT/CAREGIVER <br />HEALTH CARE SYSTEM/PROVIDER<br />
  24. 24. Adherence Cascade<br />Health Care System/Provider<br /> EDUCATE <br />MONITOR<br /> CARE & TREATMENT<br />INTERVENE<br /> MEASURE<br />Parents, aunts, uncles, grandparents, siblings, peers, friends, foster parents, nanny/house help <br />
  25. 25. What are some of the Adherence Challenges you can Expect?<br />
  26. 26. How would you Provide Adherence to Care Support?<br />
  27. 27. How would you provide Adherence Education and Preparation<br />
  28. 28. Adherence Preparation Strategies<br />
  29. 29. Other Adherence Preparation Tools<br />
  30. 30. Adherence Assessment <br />Caregiver/Self-report is the least expensive and most frequently used (tends to over estimate)<br /> Concerns about social desirability and recall bias<br />Child report accurate when developmentally appropriate <br /> Non judgmental attitude: trust, partnership and honesty <br />MDT approach- its everyone&apos;s responsibility <br />
  31. 31. Strategies Evaluated in the Literature to Improve Adherence in Children <br />Few strategies for improving adherence in children have been reported in the literature<br />Directly Observed Therapy- Gigliotti 2001, Roberts 2004<br />Educational Program using treatment buddies- Lyon 2003<br />Insertion of G tube- Shingadia 2000<br />Behavioral Change-Rogers 2001<br />Home based care/Nursing- Ellis 2006, Berrien 2004<br />Most are descriptive with small sample sizes <br />Recently more data from LRS<br />Psychosocial and treatment literacy activities- Van Winghem 2008<br />Family based interventions –Alicea IAS 2009<br />Community partnerships- Owiso IAS 2009<br />
  32. 32. Strategies and Interventions to Facilitate Adherence (1)<br />Child/Caregiver and Family<br />Intensive education before starting therapy, provision of educational materials (visual and written )<br />Use of reminders, link to daily activities<br />Share responsibility for remembering medication within household<br />Small incentives for children when they take their medicines<br />Psychosocial support services (family support/family based interventions, treatment buddies, individualized and family counseling<br />Adherence aides (pill boxes, adherence calendar, alarms) <br /> Developmentally appropriate HIV disease education and disclosure<br />DOT <br />Social support/community linkages<br />
  33. 33. Strategies and Interventions to Facilitate Adherence (2)<br />Health care system<br />Establish long term relationship with child, family and clinic staff<br />Child friendly clinics<br />Family centered care<br />Functioning appointment systems<br />Efficient patient defaulter tracing mechanisms<br />Clearly defined ways to assess, monitor and provide adherence support<br />Support groups (children, adolescents and caregivers)<br />Mentoring of providers and counselors<br /> MDT approach to adherence<br />Use data for quality improvement<br />
  34. 34. Strategies and Interventions to Facilitate Adherence (3)<br />Medication<br />Reduce number of pills (FDC) and frequency of administration<br />Switching large volumes to pills <br />Labeling syringes, color coding medications<br />Blister packs<br />Adapt treatment to child and families lifestyle<br />Use the most tolerable combinations<br />Minimize side effects & drug interactions<br />
  35. 35. Summary<br />Adherence in children in LRS is equal or may be better than children in HRS<br />Adherence estimates vary depending on measurement strategy<br />self/caregiver report is most commonly used <br />Factors affecting adherence in children and adolescents are complex and change over time<br />Need to have the appropriate systems to facilitate adherence (appointment systems, defaulter tracing etc.)<br />Strategies that work must be multifocal and broad, developmentally appropriate for the child, should also include caregiver, family, health system and community<br />
  36. 36. MURAKOZE<br />
  37. 37. S2S-Adherence Support for Adolescents<br />Kenya-Pediatric Appointment and Adherence Systems<br /> Ethiopia- MDT Approach to Adherence<br />COUNTRY EXAMPLES<br />
  38. 38. Supporting Sustainable Adherence to HIV Prevention, Care & Treatment<br />ICAP Technical Workshop<br />October 19-22, 2009Kigali, Rwanda<br />Adherence Support for Adolescents<br />Marina Rifkin, Program Monitoring Advisor<br />South 2 South – South Africa<br /> Partnership for Comprehensive Family HIV Care and Treatment Programs<br />
  39. 39. Adolescents in Care at Tygerberg Children’s Hospital<br />Currently a total of 60 (25%) of the approximately 240 children on ART are between the ages of 10 and 17<br />Clinical services are offered on different days for different age groups (10-11 years, 12-13 years, 14+ years)<br />At age 18 patients are transferred to the adult clinic, based on developmental readiness<br />39<br />
  40. 40. Survey of Adolescent Informed Adolescent Program<br />Prior to establishing the adolescent clinic, staff conducted a survey of adolescents in care to determine structure/issues to address in the adolescent clinic <br />Adolescents were asked about issues they are facing, what their concerns for the future are and issues they would like to discuss<br />Adolescent program formalized in January 2009<br />Goals:<br /><ul><li>Provide specialized services for growing number of adolescents who are HIV positive
  41. 41. Ensure that patients become well-adjusted adolescents
  42. 42. Allow for a less abrupt transition into adult care
  43. 43. Provide a holistic approach geared at adolescents, the issues they are faced with and providing tools and support structures to ensure that they are nurtured through this difficult period of their lives
  44. 44. Support and education for parents of HIV positive adolescents</li></ul>40<br />
  45. 45. Activities to Support Adolescent Adherence<br />One on one sessions with a Social Worker<br />Groups for adolescents at the Tygerberg Hospital family clinic following routine appointments at pediatric clinic appointments to reduce number of days spent out of school<br />Issues discussed:<br /><ul><li>Disclosure
  46. 46. Adherence to medication
  47. 47. Arts and crafts
  48. 48. Life skills/caring for yourself
  49. 49. School-related issues
  50. 50. Family issues</li></ul>41<br />
  51. 51. Support for Caregivers<br />Support group for caregiver started in June 2008<br /><ul><li>ARV treatment
  52. 52. Disclosure
  53. 53. Sexuality and sexual abuse
  54. 54. Financial issues/fund raising
  55. 55. Arts and crafts</li></ul>“I like the way the information was delivered. How to teach children about HIV/AIDS and the importance of giving meds as well. How to help them with their schoolwork, and I really enjoy the day and the way we were treated” - Grandma<br />42<br />
  56. 56. Tools and on-site Capacity Building Support<br />Clinical mentorship to social workers and lay counselors at CHC and ART clinics on issues related to:<br /><ul><li>Pediatric disclosure
  57. 57. Importance of including lay counselors and social workers in MDT</li></ul>Promotion of youth-friendly educational material<br /><ul><li>MediKidz comic book on HIV and AIDS
  58. 58. Soccer and HIV
  59. 59. Hero book</li></ul>43<br />
  60. 60. Thanks to:<br />44<br />Sr. Vivian O’Brian<br />Sonja Oberholse<br />Staff of the Tygerberg Family Clinic<br />Patients and their families<br />
  61. 61. PEDIATRIC APPOINTMENT & ADHERENCE SYSTEMS<br />Frida Njogu, MD, MPH<br />ICAP Kenya<br />Supporting Sustainable Adherence to HIV Prevention, Care & Treatment<br />ICAP Technical Workshop<br />October 19-22, 2009Kigali, Rwanda<br />
  62. 62. Challenges in Pediatric Appointments, Adherence and Retention<br />Integration of other child survival mechanisms e.g. IMCI, Immunization <br />Change of caretaker – death of parent<br />Elderly caretakers – literacy, ill health<br />Dependent on ‘others’ to bring them to clinic<br />Difficulty quantifying syrup used (compared to pill count)<br />
  63. 63. Systems To Support Pediatric Adherence<br />Appointment system<br />Diary integrates appointments and assessment<br />Integrated services<br />Adherence support tools:<br />
  64. 64. Appointment Diary<br />
  65. 65. Integration...<br />Dedicated peds clinic day <br />Same day appointments for mother/caretaker and family (family care clinic concept)<br />Integrated TB/HIV clinic for co-infected<br />Integrated with immunization schedule<br />On same day receive/are linked to nutrition supplementation in some sites (Machakos, UNICEF linkage)<br />Same day have caretaker and pedpsychososcial support groups<br />Bi-annual RBS and 3 monthly BP checks in MtitoAndei to improve retention and adherence<br />
  66. 66. Colour Coding System<br />Rationale: elderly caregivers<br />Early stages of pilot <br />SOP developed<br />Waterproof coloured strip on syringe, corresponding coloured label on bottle<br />Top edge on syringe marks the dose<br />Demonstrated during dispensing, reverse demonstration at adherence assessment<br />
  67. 67. Colour Coding<br />
  68. 68. Plans<br />Further and more complete integration of services<br />Roll out Color Coding system<br />Treatment Supporter system for elderly caretakers<br />
  69. 69. Collaboration BetweenCU-ICAP Ethiopia and The Psychosocial Unit at Adama Hospital<br />Yoseph GutemaPediatric/PMTCT Advisor ICAP Ethiopia Kigali, RwandaOctober 21,2009<br />Supporting Sustainable Adherence to HIV Prevention, Care & Treatment<br />ICAP Technical Workshop<br />October 19-22, 2009Kigali, Rwanda<br />
  70. 70. Adama Hospital<br />Located in Adama town<br />Adama hospital is a 250-bed regional referral hospital<br />The catchment population of the hospital is estimated to be 5 million<br />In Adama Town(until September 2009)<br /><ul><li>no of street children= 867
  71. 71. no of OVC = 1020
  72. 72. no of sexually abused children= 526</li></li></ul><li>Adama Hospital<br /><ul><li>In Adama hospital,
  73. 73. no of children ever enrolled in care </li></ul>= 1411/ 7192(19 %)<br /><ul><li>no of children ever started on ART = 639/3477(18.3 % )</li></li></ul><li>Adama Hospital ART Center<br />
  74. 74. Adama Hospital ART Center<br />
  75. 75. Adama Hospital Pediatric Friendly Clinic<br />
  76. 76. Adama Hospital Pediatric Friendly Clinic<br />
  77. 77. Cumulative no of Infants & Children Ever Started and Ever Enrolled in Care at Adama Hospital<br />
  78. 78. UTCSA at Adama Hospital<br />Psychologist is hired to attend to needs of children in community<br />Provides psychological support for abused children<br />Provides care and support for abandoned children<br />Facilitate age determination service for children in conflict with the law<br />
  79. 79. Unit for Treatment of Children who need Special Attention<br />
  80. 80. ICAP-E and UTCSA Collaboration <br />Problems identified in our HIV-infected children<br /><ul><li>Orphanhood
  81. 81. Mental health problems
  82. 82. Child abuse
  83. 83. Homeless</li></ul>Collaborate with the psychologist as part of the MDT to meet the special need of the children enrolled in care at Adama Hospital<br />
  84. 84. Psychosocial problems referred from ART Clinic<br />
  85. 85. Services Provided by the MDT <br /><ul><li>Psychological support</li></ul>Child Centered Counseling<br />Play Therapy<br />Sand box/tray<br />Anatomically correct dolls <br />Different games. <br />Puppets<br /><ul><li>Medical support</li></li></ul><li>8Yrs old child (sexually abused)<br />
  86. 86. 14 yrs old child (sexually abused)<br />
  87. 87. Next Steps<br />Establishment of Pediatric Peer support Group/ buddies<br />Expanding the service to other ICAP supported facilities<br />Adama Pediatric Psychosocial unit will be model center<br />
  88. 88. Photo: Lora Iannotti<br />Thank You For<br />Your Attention<br />

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