Reflections on efforts to support children living with Nephrotic Syndrome in rural North Vietnam

Reflections on efforts to support children living with Nephrotic Syndrome in rural North Vietnam

Thai Binh Pediatric Hospital Nephrotic Syndrome Club Meeting 2014

After several years supporting Nephrotic Syndrome (NS) Club Meetings at the major tertiary referral hospital in North Vietnam, the National Hospital of Pediatrics (NHP) in Hanoi, CLAN’s team was thrilled on 23 June 2014 to travel to Thai Binh Province and attend the 2nd Annual NS Club meeting and a training session for health professionals in this more rural area. Thai Binh is a three hour drive from Hanoi, and until just a few years ago was one of the poorest provinces in North Vietnam, with a majority of families from farming background (Thai Binh is well known for its rice). With a population of 1.9 million this rural region has traditionally had to transfer children with NS to the National Hospital of Pediatrics in Hanoi for treatment, but excitingly that is now changing.

Thai Binh Pediatric Hospital is a 160 bed facility and was opened in 2007. It is one of around 10 stand alone pediatric hospitals in rural regions in Vietnam, and Dr Pham Thi Huong is the Head of the Nephrology Department, which cares for around 90 children with Nephrotic Syndrome. CLAN’s team were humbled to learn that with no specific Nephrology Department, Dr Pham Thi Huong is also responsible for Haematology, Cardiology, Neurology, Endocrinology and a number of other specialities, so she is invariably busy!

Particularly after the 2013 NS Club meeting, Thai Binh Pediatric Hospital is gradually increasing its capacity to care for children with NS locally. The hospital is not yet able to do renal biopsies however, and refer children to NHP in Hanoi where a child’s NS is more complex or severe. Staff and families alike were thrilled to have visiting international experts in the field of Nephrotic Syndrome (NS) travel to Thai Binh to support local efforts to maximize quality of life for children living with NS in this rural region.

Sincere thanks must go to the following national and international experts for travelling to Thai Binh and sharing their time and experience so generously with the NS Community in Vietnam:

  1. Dr Nguyen Thu Huong (Head of Nephrology Department at NHP). In 2013 Dr NT Huong travelled to Thai Binh to support their inaugural NS Club meeting
  2. Dr Elisabeth Hodson (Paediatric Nephrologist, The Children’s Hospital at Westmead, Australia)
  3. Mr Henry Brehm (Executive Director, The NephCure Foundation, USA)
  4. Ms Azadeh Issapour and Mr David Cisewski (Medical Students from Albert Einstein College of Medicine)

The visiting team travelled from Hanoi to Thai Binh by bus, leaving around 6:15am to make the journey north-east (past miles of rice paddy fields!) and arriving in time for the start of the 2nd NS Club Meeting in time for its 9am start. The NS Club meeting was well underway by the time the visiting team arrived, with registration of families completed (53 attended and all were presented with printed educational newsletter and booklets on NS) and a lively musical entertainment session in full swing for children and families. The head of nursing in the Pediatric Hospital sang a beautiful duet with her own daughter about the love between mothers and daughters. This performance was followed by 6 year old Nam, the son of the Thai Binh NS Club President, who has been living with NS for a couple of years and is now in remission. Finally, a group performance by doctors, nurses and medical students of Thai Binh performed a popular traditional Vietnamese song about ducks – an animal that is plentiful in the rice paddies of Thai Binh! Such active involvement of staff members sent a clear message to families that their Club meeting was a high priority to the hospital.

The more formal part of the meeting commenced with an address by the Director of Thai Binh Pediatric hospital, Dr Nguyen Thi Minh Chinh. Dr Chinh explained the purpose of the Club meetings to families, and also introduced Vice Director Giang to share a few words. Elisabeth Hodson then shared a talk on NS (with thanks to translations by Dr NT Huong) and focused on ways families can optimally manage their children’s health care. Dr Kate Armstrong followed Dr Hodson with a brief presentation from CLAN, introducing NephCure Foundation and generally encouraging families to consider ways their local community can connect nationally and internationally with other NS Communities. Interestingly, a show of hands indicated that no families in the Thai Binh NS Club speak English and very few use Facebook, so finding ways to connect internationally and overcome language barriers will be an important consideration. By contrast, around 50% of families present raised their hands to indicate they had attended the inaugural 2013 NS Club; and over 70% of families indicated they now tested their children’s urine for protein at home!

Families were very interested in the next presentation, where Dr PT Huong shared statistical insights into NS in Thai Binh:

- 79.5% of patients are male; 21.5% are female
- there are 90 patients in all (with 53/90 = 60% attending the Club meeting it was encouraging to know such a large number of families were receiving educational updates on NS and connecting with one another for support)
- treatment outcomes have improved from 2012 to 2013, viz:

  •             Children in remission (35.4% to 53%)
  •             Non-compliance (stable at 10%)
  •             Transfers to NHP for treatment (down from 24.6% to 10%)
  •             Those on treatment at current time (30..8% to 28%)

 

Figures for the full period of 2013 were also compared with the first 6 month period of 2014, and results are likewise very encouraging:

  •             Less patients admitted to Thai Binh (36 in 2013; 12 so far in 2014)
  •             Less new patients (16 in 2013; 5 so far in 2014)
  •             Transfers to NHP (10 in 2013; only 2 so far in 2014)
  •             Children having a relapse (16 in 2013; 7 so far in 2014)
  •             Outpatient visits up slightly (685 in 2013; 372 so far in 2014)

 

These numbers were universally encouraging. Although Outpatient numbers were up slightly, admissions and transfers  to Hanoi were down, and this represented a remarkable savings for the national insurance and health system.

A nurse from Thai Binh Pediatric Hospital presented after Dr PT Huong, and spoke to families about when and how to perform urine testing for protein. All families were given a box of dipsticks for free at the Club meeting, and based on questions asked and anecdotal reports, are now testing their children’s urine at home. This is an important and empowering step for families, as it means many less trips to hospital and allows them to take control of their child’s treatment more effectively.

The next part of the meeting was a very active question and answer session. Lasting over an hour, families had the opportunity to raise a range of questions, and also learn from the answers given to others. Questions ranged from queries about the use of traditional medicines to manage NS (not recommended as some can damage the kidneys); the use of vitamin tablets as supplements to prescribed medications; causes of relapses; dietary concerns; and technical queries about urine testing. For the most part though, families had the opportunity to share their own experiences, and ask detailed questions about their own child’s specific situation. With crowded outpatient departments and limited face to face time with doctors, families treasured this opportunity to ask questions and learn from others’ queries as well.

After this grueling Q&A session, the Thai Binh NS Club President Mr Nguyen Duy Tan gave his speech. Mr Tan has a 6 year old son with NS (actually one of the star musical performers of the day!), and encouraged families to connect with one another via Facebook for ongoing support. The Director of Thai Binh Pediatric Hospital, Dr Chinh, then reiterated the President’s closing remarks, reminding families of the purpose of the NS Clubs: to empower families to learn all they can about NS; connect with others living with the same condition; and help everyone work together to find the best ways to care for the children. Dr Chinh expressed her hope that in future families will have greater confidence to communicate together, and support one another on their journey with NS. Thai Binh Pediatric Hospital is expanding in the near future, and Dr Chinh committed to ongoing efforts to support children with chronic health conditions. The long-term nature of treatment was acknowledged as a major challenge for families, and the NS Club is recognized as playing an important role in supporting families, sharing information and reducing burdens on all.

On that positive note, children who had excelled at school in the last 12 months were invited forward to receive awards from Drs Huong and Hodson. There were in fact so many children receiving awards that several groups had to be presented in turn, and the children beamed as parents looked on proudly. 

With presents proudly held by the children, families then filed out of the conference room, and queued to receive monies in envelopes to cover lunch and transport costs. Overall there was a great feel to the day, and the future for the NS Community in Thai Binh appears very bright. Thai Binh Pediatric Hospital now has 2 Clubs for chronic health conditions of childhood (Asthma and NS), with plans to expand in 2015 to Epilepsy and Autism. CLAN is excited about development for families and children in Thai Binh!

 

 

 

Training for Health Professionals at Thai Binh Pediatric Hospital

 

On the afternoon of Monday 23 June 2014 a half day CME (Continuing Medical Education) session was held on Nephrotic Syndrome and pediatric renal disease at Thai Binh Pediatric Hospital for about 50 doctors from around the region. Visiting experts gave a series of lectures on topics requested by Dr Chi and her team as particular areas of focus viz:

  1. Management of steroid - dependent NS

  2. Management of steroid - resistant NS according to causes.
  3. Management of Lupus nephritis

  4. IgA nephropathy
  5. Diagnosis and treatment of prolonged, recurrent hematuria.

Local health professionals enjoyed the lectures and many questions were asked throughout the day.

 

 

Many thanks to all for their efforts driving change for children and families living with NS in Vietnam.

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