Table 1

Summary of recent studies describing models of chronic lifelong care for children and adolescents in LMICs

Author/ country	Study design	Model of care	Outcomes measured
Facility-based models
Bacha J²⁹ Tanzania	Retrospective cohort	Model: Standardised Paediatric Expedited Encounters for ART Drugs Initiative Type: Facility-based individual model Objective: Stable patients on ART for 3+ months with good adherence and reliable caregiver transition to ART pharmacy refills that last 2 months to facilitate less frequent clinical visits Target population: Clinically stable children, adolescents and young adults, ages 1–25 years, living with HIV, with demonstrated adequate adherence to ART (n=1164) Care components: (1) ART refill every 2 months; (2) clinical visit once every 4 months; (3) routine laboratory testing done as needed during visits Service delivery: (1) decentralised HIV services Resources invested: Not specified	LTFU: 0.6% (7/1164) Died: 1.1% (13/1164) Mortality rate: 0.61/100 patient-years
Bahendeka S¹⁸ Uganda	Programmatic description	Model: Type 1 diabetes mellitus (T1DM) clinics in a primary care setting Type: Facility-based individual model Objective: A population health approach in a resource-restricted setting which addresses the health needs of paediatric and adolescent populations affected by diabetes Target population: Children ages 0–18 with type one diabetes (n=1187) Care components: (1) resources identified for auxiliary support (family and community) for patients; (2) patients provided with core supplies (insulin, syringes, glucose metres, lancing devices and strips) for self-monitoring blood glucose; (3) self-management education provided to patients on day or diagnosis and in a 5 day training programme for those age 10 and older; (4) tele-support from nurses using mobile phones as needed; (5) HbA1c measured every 4 months in stable patients and more often in those unstable; (6) multidimensional review of blood glucose level with health provider and family; (7) SMS reminder and question answering by clinic staff Service delivery: (1) designated space for T1DM clinic within primary healthcare facilities; (2) larger referral centres are designated ‘hubs’ with smaller health facilities as ‘spokes’ – all with capacity for T1DM management but hubs responsible for training and referral of complicated cases Resources invested: (1) establishing space for T1DM clinic; (2) training for cadres of healthcare professionals from nurses to clinical officers to MDs in T1DM managements; (3) central electronic registry for T1DM patients which includes external server, technical support and reliable electricity power; (4) resources for core supplies	Mortality was 3.8% (45/1187) and LTFU was 2.1% (25/1187) over the 10 year period. Mean HbA1c did not differ from baseline (10.0; 95% CI 9.7–10.2) to any follow-up measurement: first (9.7; 95% CI 9.5 to 9.9), second (9.9; 95% CI 9.6 to 10.1), third (9.9; 95% CI 9.6 to 10.2), or fourth (9.6; 95% CI 9.3 to 9.9); p=0.07
Kim MH Botswana, Lesotho, Swaziland, Malawi, Uganda, Tanzania30	Retrospective cohort	Model: Multi-month prescriptions (MMP) of ART Type: Facility-based individual model Objective: Stable patients with improving CD4 cell count of CD4% or viral suppression and minimal HIV-associated morbidity and ART adherent (pill count 95%–105%) transitioned to less frequent clinical visits. Target population: Children and adolescents living with HIV, ages 0–19 years (n=5008) Care components: (1) ART refills to last 2–6 months; (2) Clinical visits only when refilling ART; (3) annual VL assessed Service delivery: (1) decentralised HIV services Resources invested: not specified	Proportion of participants with VL <400 copies/mL by age at initiation of MMP: Baseline: Age 1–9: 85% Age 10–19: 80% 60 months: Age 1–9: 85% Age 10–19: 75%
Kwarisiima D³² Uganda, Kenya	Cluster RCT	Model: Patient-centred streamlined care model Type: Facility-based individual model Objective: An HIV test-and-treat strategy designed to reduce patient barriers to care and increase health system efficiency by (1) reducing structural barriers to care; (2) improving relationships between patients and the clinic; (3) enhancing patients and clinician knowledge of HIV and ART Target population: Children living with HIV, ages 2–14 years (n=83) Care components: (1) caregivers encouraged to call clinic’s mobile phone with questions or symptoms; (2) deworming, vitamin A supplements and treatment of childhood illnesses provided in same clinic; (3) 3 month ART refills; (4) appt. reminder calls made 1 week prior; (5) phone contact, home visit and facilitation of transport to return to clinic offered to patients with missed visits; (6) VL testing and counselling with staff trained on VL counselling methods Service delivery: (1) community health fairs or home visits for HIV testing; (2) on HIV diagnosis, given appointment at local clinic or evaluation <1 week for ART initiation; (3) on ART initiation, nurse-conducted ART visits with physician referral of complex cases (4) off-hours visits offered to patients with difficulty attending during normal hours; (5) flexible appointment dates and locations for adolescents ART pick up and clinical visits. Resources invested: (1) clinic phone staffed 24 hours/day for patient questions; (2) training for clinic staff in patient-centred and pediatric-friendly care including role-play scenarios, didactic lectures and monthly team meetings to discuss challenging situations or share success stories; (3) training on VL counselling	Retention in care 48 weeks was 89% (74/83); of 74 in care 96% (71/74) had measured VL and 92% (65/71) had virologic suppression (<500 copies/mL)
Lv S³¹ China	Multi-centre RCT	Model: Nurse-led, mobile application assisted, asthma care Type: Facility-based individual model Objective: Encourage patient engagement and improve asthma management with a nurse-led model of care that includes a mobile application for medical management and patient communication Target population: Children ages 6–12 years with asthma (n=152) Care components: (1) in-person nurse visits; (2) parents input adherence and medical information into smart phone application daily; (3) nurses provided medication reminders, adherence management support and responded to any questions through smart phone application; (4) health and asthma education provided at each clinical visit; (5) nurses called patient or caregiver 2 weeks after each clinical visit to review asthma status, obtain health information including symptoms, medications, control of exacerbations, C-ACT scores, adherence and medical expenses. Service delivery: (1) services offered at local hospitals or community health centres Resources invested: (1) software programme that can be used in mobile smartphone (for patients and caregivers) and desktop computer (in health facility)	Frequency of asthma exacerbations evaluated decreased in intervention group (3 vs 4 per year; p<0.001) Treatment adherence higher in intervention group (94.46% vs 92.67% p<0.05) Respiratory tract infections lower in intervention group (p<0.05).
Manglani M India23	Retrospective chart review	Model: Paediatric HIV Telemedicine Initiative Type: Facility-based individual model Objective: E-decentralised health service delivery model in which care is provided by local healthcare providers and support provided by a paediatric HIV centre of excellence through telemedicine videoconferencing Target population: Children living with HIV, ages 0–18 (n=5411) Care components: (1) video conference (VC) with linked expert centre/4–6 weeks or need-based to review paediatric HIV cases; (2) Centres of excellence consulted on HIV diagnosis, ART initiation and follow-up, management and/or prophylaxis of opportunistic infections, drug toxicities, treatment failure, nutrition and adherence counselling, and age-appropriate disclosure; (3) mortality reviews and mentoring and training sessions also conducted by VC to build capacity at peripheral sites. Service delivery: (1) peripheral ART centres linked to paediatric HIV centres of excellence via telemedicine Resources invested: (1) software, equipment and technology to support video conferencing	Three group comparison: non-linked sites vs linked sites participated in <4 VC sessions over 2 years vs linked sites that participated in >4 VC sessions over 2 years. Mortality higher in linked site (<4 VC) (6%) vs linked site (>4 VC) (4%) vs non-linked site (4%) (p=0.02) LTFU was lower in linked site (<4 VC) (4%) vs linked site (>4 VC) (4%) vs non-linked site (9%) (p<0.001).
Melaku Z³⁴ Ethiopia	Programmatic description	Model: National HIV Services Type: Facility-based individual model Objective: Scaling up ART nation-wide through decentralised HIV services Target population: Children living with HIV, ages 0–14 (n=11 695) Care components: (1) provider-initiated HIV testing and counselling in all health facilities; (2) early infant diagnosis; (3) national guidelines for paediatric HIV providing framework for provision of comprehensive services including infant diagnosis, ART, adherence and psychosocial support. Service delivery: (1) decentralised HIV services to urban and rural centres Resources invested: not specified	Between 2006–2013, 11 695 children enrolled in HIV care. 12 months after enrolment into HIV care, 2090/11 695 (17.9%) were LTFU; 6815 (58.3%) initiated ART before age 15. Among patients who initiated ART <15 years, cumulative incidence of LTFU or recorded death was 10.9% at month 6, 15.5% at month 12, and 20.6% at month 24.
Community-based models
Bakir E²¹ Turkey	RCT	Model: Home-based, nurse-led information-motivation-behavioural (IMB) skills Type: Community-based individual model Objective: Increase the knowledge level of adolescents, ensure their motivation, and provide the necessary behavioural skills, and enhance self-efficacy to develop behaviours that maintain and improve health Target population: Adolescents with diabetes, mean age 14 (n=50) Care components: (1) trained nurse facilitator conducts eight home visits to deliver the IMB model, (2) diabetes team consisting of physician, nurse, dietician cooperated on care plan; (3) phone interviews 2 weeks after home visits included consultation on blood glucose, insulin administration, nutrition, exercise. Service delivery: (1) home-based support Resources invested: (1) certificate training in motivational interviewing techniques	Mean diabetes information scores at 6 months higher in intervention group (p<0.001) Mean perceived social support score at 6 months higher in intervention group (p=0.004) Mean self-efficacy score higher at 6 months higher in intervention group (p<0.001) Mean HbA1c levels in intervention group lower at month 3 (8.2 vs 9.59; p<0.001) and 6 (8.25 vs 9.72; p<0.001)
Fatti G¹⁹ South Africa	Retrospective cohort with non-randomised comparison	Model: Community-based support services (CBS) Type: Community-based family model Objective: Clinic-linked, lay community health workers increase the health workforce at limited cost in developing settings to ART support via home visits for adolescents living with HIV Target population: Adolescents and youth living with HIV, ages 10–24 (n=6706) Care components: : (1) trained lay health workers manage caseload of 80–120 patients each; (2) support from pre-ART through long-term care; (3) patient, family, household issues assessed by CBS worker included: nutrition security, substance abuse, mental health, domestic violence, non-disclosure, HIV stigma and discrimination; (4) CBS worker advised by multidisciplinary clinic team; (5) 1-on-1 adherence counselling, support and referral for psychosocial problems and nutrition security; 6) education on HIV/TB, adherence, nutrition, SRH and FP Service delivery: (1) Home visits to assess patient, family, household issues/weekly for first 1–2 months then monthly for 6 weeks then quarterly once stable Resources invested: (1) CBS-workers trained regarding HIV and TB infection and treatment; psychosocial issues impacting adherence	Mortality of CBS-supported patients was 4.1% (87/2,100) vs 5.6% (256/4606) among those without support (p=0.02) LTFU of CBS-supported patients was 13.6% (286/2100) vs 19.2% (885/4606) among those without support (p<0.01) Mean medication possession ratio of CBS-supported patients was 82.5% vs 83.0% among those without support (p=0.2) Virological suppression among CBS-supported patients was 71.8% vs 67.3% among those without support at 3 years (0.93) and 81.2% vs 62.8%, respectively, at 5 years (p=0.06).
Malla A²⁰ India	Prospective Cohort	Model: Lay Health Worker Mental Healthcare Service Delivery Type: Community-based family model Objective: Lay health workers provide basic mental health services, supported by low-cost technology and specialists (psychiatrist, social worker, psychologist) for consultation and supervision. Applicable in environments where protracted political or armed conflict, low resources or geographical isolation make exclusive reliance on scarce professional service impractical. Target population: Adolescents and young people living with mental disorders, ages 14–30 (n=262) Care components: (1) 40 trained lay health workers (LHWs) each covered an average of 5000 residents; (2) psychiatrist, LHW, counsellor and patient develop treatment plan; (3) hospitalisation when required at inpatient hospital facility Service delivery: (2) case identification by LHWs or referral of community member to LHW; (2) LHW home visit for assessment and psychiatric consultation within 2 weeks; (3) LHW follow-up of 12 months with frequent contact (bi-weekly) in first 3 months and in crisis situations; Resources invested: (1) Training included didactic manual with nine modules and clinical shadowing; (2) engagement of 150 key stakeholders (eg, religious leaders, faith healers, school teachers, local gov’t leaders, community healthcare personnel and media) in at least one meeting; (3) 50 key stakeholders engaged in six mental health workshops to raise awareness and de-stigmatise mental illness and improve identification and management of mental disorders	LHWs identified 279 cases in 14 month period; psychiatrist diagnosis of 262 cases within a mean 14 days. Global Assessment of Functioning score: Improvement over time (F(3.449, 517.382) 12=104.729, p=0.001). WHOQOL-BREF: Improvement over time for all domains: physical health (F(1.861, 368.461)= 40.820, p=0.001]); psychological health (F(1.845, 365.280)= 55.490, p=0.001); social relationships (F(1.583, 313.462)= 25.189, p=0.001); environment (F(1.791, 354.709)= 40.902, p=0.001).
Reif L²⁴ Haiti	Pilot prospective cohort	Model: FANMI: community-based cohort care for HIV service delivery Type: Community-based peer group model Objective: Address barriers including social isolation, family rejection, stigma and disjointed care with multiple providers by providing HIV care in monthly community-based cohort sessions Target population: Adolescents living with HIV ages 10–20 (n=50) Care components: (1) monthly cohort sessions of 5–8 adolescents receive clinical check-up by a nurse in a community setting; (2) peer psychosocial support facilitated by group social dynamic; (3) streamlined services with clinical check-up, ART refill, laboratory tests all offered in community setting by single healthcare provider; (4) sexual and reproductive health curriculum provided at monthly session; (5) referral to HIV clinic whenever desired by patient or nurse deems necessary; (6) smart phone application group chats for psychosocial support. Service delivery: (1) group-based care in a community setting Resources invested: (1) nurse training in adolescent HIV service provision; (2) community setting location for cohort meeting; (3) point-of-care CD4 testing ability	At 12 months from ART initiation, 86% of participants were retained in care and 33% had VL<1000 copies/mL.
Zuurmond M Ghana22	Prospective cohort	Model: Getting to Know Cerebral Palsy Type: Community-based family model Objective: To empower caregivers and to improve care and support for children, within a rights-based framework Target population: Caregivers and children ages 18 months to 12 years with cerebral palsy (n=75) Care components: (1) Physiotherapist or physiotherapist assistant and primary health workers provide 11 monthly group training sessions offered in community setting (8–10 parents & 3 hour session) to empower parents; (2) support groups maintained after training programme led by expert mothers; (3) monthly family visits by facilitator (45 mins) to provide individual support to caregiver; (4) transport support provided to families to attend group sessions. Service delivery: (1) home-based support Resources invested: not specified	2 months after completion of programme, caregiver mean quality of life score improved from 12.5 to 51.4 (p<0.001); malnutrition remained high (63% vs 65%, p=0.5); frequency of reported serious illness over 12 months remained high (67%) but recent illness episodes decreased from 64% to 50% (p<0.05)
Hybrid models
Ahmed S²⁵ Malawi	Programmatic description	Model: Tingathe Type: Hybrid family model Objective: Outreach programme utilising community health workers (CHWs) to improve uptake and utilisation of PMTCT, early infant diagnosis, and paediatric HIV care services. Target population: HIV-infected pregnant women, infants, children and adolescents (n=351) Care components: (1) Mentorship for paediatric HIV clinic staff in once weekly sessions; (2) provision of pre-ART care including clinical staging, and CD4 measurements in the paediatric HIV clinic; (3) training for CHWs in community sensitisation, facility-based and community-based HIV testing and counselling, and active case finding; (4) positive linkage—testing children at high risk, including children of adult ART patients, children at TB and malnutrition clinics, and orphanages and linking them to clinical care; children and adolescents diagnosed with HIV assigned a CHW for home-based adherence and clinical support; (5) CHWs assigned to HIV-positive pregnant women at antenatal care to support access to PMTCT services, infant feeding practices, and enrolment of infants into care from initial diagnosis through cessation of breastfeeding and final infant testing Service delivery: (1) CHW facility-based and home-based support; (2) patient ‘mastercards’ to document and track clinic appointments, home visits, services utilised, new diagnoses and test results Resources invested: (1) Trained paediatric HIV clinical mentors; (2) training for CHWs	At programme start, 42 children were in active care (38 HIV-infected and 4 HIV-exposed). Over 3 years of the programme 2545 new paediatric patients (764 HIV-infected and 1,781 HIV-exposed) were enrolled in care. Median age of enrolment in care of HIV-exposed infants decreased from 7.0 months at programme start to 2.5 months 3 years from programme start (p<0.001) Enrolment of HIV-infected children into care increased 23-fold between programme start and 3 years.
Mapangisana T²⁶ Zimbabwe	Programmatic description	Model: Community-based ART Type: Hybrid individual model Objective: Decentralised, community-based ART service delivery and VL monitoring in rural community ART outreach sites. Target population: Children and adolescents living with HIV, ages 0–23 (n=306) Care components: (1) bi-monthly ART at rural outreach sites; (2) outreach visits to refill prescriptions ART drugs, offer adherence counselling, capture vital signs and assess problems; (3) CHWs inform and remind participants to attend visits; (4) Outreach visit for ART refill, adherence counselling, clinical check-up/every 2 months; appointment reminders from CHWs/as needed Service delivery (1) multidisciplinary team (nurse, pharmacy assistance, counsellor) travel to outreach site bimonthly to provide services to community care groups of 200–400 PLWHIV; Resources invested: (1) resources for bimonthly travel to outreach sites; (2) whole blood sample transportation while frozen at −20 °C	At 24 months; 86% (264/306) were retained in care, 7% (23/306) transferred to other facility, 6% (17/306) LTFU, 0.6% (2/306) died.
Mavhu W²⁷ Zimbabwe	Cluster RCT	Model: Zvandiri: Peer-led HIV service-delivery model Type: Hybrid individual model Objective: To directly improve the well-being of children, adolescents and young people living with HIV and strengthen their engagement with services across the HIV prevention and care cascades. Target population: Adolescents living with HIV, ages 13–19 years (N=500) Care components: (1) community adolescent treatment supporters (CATS), peer counsellors also living with HIV, ages 18–24 years, assigned to participants; (2) patients encouraged to participate in monthly support groups facilitated by volunteer nurse, teacher, or social worker; (3) clinic visits every 3 months with CD4 monitoring every 6 months; (4) adolescents with VL <1000 copies/mo were offered once monthly home visit plus weekly individualised text message for motivational reminder related to adherence, attendance at clinic an support groups and encouragement contact CATS with any problems; (5) adolescents with VL >1000 copies/mL, at risk of common mental disorders or major depressive disorder, who have missed >1 clinic visit, were pregnant, or started ART <3 months prior were offered enhanced intervention of two home visits per week, phone calls weekly and test messages daily; (6) enhanced intervention also included community health nurse or case care worker during home visit; (7) caregivers invited to 12 monthly sessions facilitated by CATS and CATS supervisor to improve knowledge, skills and confidence of HIV and treatment literacy, communication and parenting and available support services. Service delivery: (1) decentralised HIV services with home-based care management by CATS Resources invested: (1) staff for delivering counselling and adherence support at clinics and at home visit; (2) no additional information provided	Viral suppression (<1000 copies/mL) achieved by 75% (157/209) in the intervention group vs 64% (173/270) in the control group (p=0.03).
Rosen J²⁸ Zambia	Prospective cohort	Model: Zambia Family Project Type: Hybrid family model Objective: Integrated delivery of psychosocial, economic strengthening and clinical services for HIV-affected households. Para-social workers conduct home visits to assess family needs and link to available resources and prevent challenges that destabilise health-seeking behaviour. Target population: Children and adolescents living with HIV, ages 5–17 years (n=544) Care components: (1) home-based HIV counselling and testing, index case testing and partner notification services; (2) community-based ART adherence support with CHWs; (3) routine clinic-based CD4 and VL testing; (4) community training on parenting skills and VAC prevention including training of caregivers of ALHIV to hold community meetings; (5) farming inputs to families; (6) loans and saving schemes for families to borrow money or purchase agricultural inputs at low interest rates; (7) psychosocial support for ALHIV and caregivers from counsellors, CHWs, and neighbours. Service delivery: (1) decentralised HIV service delivery with community-based support Resources invested: none specified	ALHIV participants self-reported increased current use of ART (adjusted prevalence rate ratio: 1.06;95% CI 1.02 to 1.1; p=0.015) Caregiver participants reported reduced HIV-related stigma (appr: 0.49; 95% CI 0.28 to 0.88; p=0.017).

CBS, community-based support services; FANMI, Haitian Creole translation of "My Family"; HbA1c, Hemoglobin A1C; LMICs, low-income and middle-income countries; LTFU, Loss to Follow Up; PMTCT, prevention of mother to child transmission; RCT, randomised controlled trial; SMS, short message service; TB, tuberculosis; VAC, violence against children; VL, viral load; WHOQOL-BREF, World Health Organization Quality of Life - Abbreviated.