Working together towards eradication of clubfoot as permanent disability in Rwanda

Published by Théophile Niyitegeka
On 30 January 2017 saa 12:57
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Clubfoot background and in the society

Clubfoot or congenital talipes equinovarus (CTEV) is a common congenital musculoskeletal defect that is characterized by a downward and inward twisting of the foot. Around the world, 150 000 – 200 000 babies with clubfoot are born each year.

Approximately 80% of these will be in low and middle income countries. Most of these babies will not receive effective treatment for their clubfoot and will grow up with severe disability as a consequence.

The burden of this disability impacts on society as a whole and as such the problem of untreated clubfoot should be viewed as a public health issue which must be addressed. The UN Convention on the Rights of Persons with Disabilities Article 26 states that persons with disabilities should have access to rehabilitation services which enable them to attain and maintain maximum independence and ability.
(http://www.ohchr.org/EN/HRBodies/CRPD/Pages/ConventionRightsPersonsWithDisabilities.aspx#26)
These services should begin at the earliest possible stage and should be provided by appropriately trained rehabilitation professionals.

Untreated or incorrectly treated clubfoot soon becomes ‘neglected clubfoot’ as the child grows older and learns to walk. As the child bears weight through it, the foot position worsens and becomes more twisted. The child’s weight goes through the side and top surface of the foot as it twists, and a large bursa and callous form on the weight-bearing surface. A child with neglected clubfoot will have difficulty in wearing normal shoes and as they grow older may experience severe pain. Neglected clubfoot severely restricts ability to walk in some cases, and in others only short distances are manageable.

In Rwanda like in other Low and Middle Income Countries LMICs where transport and other infrastructure are not developed and people’s main source of income tends to be agricultural or manual labour the consequences of a neglected clubfoot can be devastating, severely impairing the individual’s ability to participate in society and income-generating activities.

In many places people with visible deformities are stigmatised and excluded from society because of cultural beliefs about disability. Practically, this can mean that individuals with clubfoot may be less likely to attend school, marry or get a job. Even the families of children with clubfoot may experience prejudice as people in some cultures believe that clubfoot is caused by a curse or evil spirits. In some countries, the mothers of children born with clubfoot may be blamed for the deformity, leading to severe family conflict, separation and even divorce. This further perpetuates the cycle of lack of participation, poverty and vulnerability caused by disability.

Profile of cure international/Rwanda clubfoot program

Cure international is an INGO established in the United States of America in 1998, based in Harrisburg, Pennsylvania. Since 1998, CURE has championed the cause of children with correctable disabilities through the development and operation of a network of hospitals and paediatric specialty programs in 26 nations. Over the course of that time, CURE has provided healing during the course of more than 1.6 million outpatient visits and over 122,000 surgical procedures, presenting our staff with the opportunity to train more than 5,200 national medical practitioners in first world quality, compassionate patient care. Its mission, taken from Luke 9:2, is to “heal the sick and proclaim the kingdom of God.” CURE Clubfoot is one of the speciality programs of CURE International.

Rwanda clubfoot program

The program started by working in 2009 with 8 hospitals and in 2011 the number of hospitals was increased to the current number of 22 government and private health facilities.

The program covers all the provinces of the country:

Northern province: Ruhengeri, Nemba and Byumba Hospitals

Southern province: Kabgayi, Munini, Nyanza, CHUB, Kigeme hospitals & Gikonko HC

Eastern province: Gahini, Nyagatare, Nyamata and Kirehe hospitals

Western province: Gisenyi, Kibuye, Gihundwe, & Kibogora hospitals and Rilima center.

City of Kigali: Muhima, Masaka, Kibagabaga and Gikondo-Inkurunziza Orthopedic hospitals

For the above health facilities, Cure International have to ensure that the program is funded in a manner consistent with guidelines and known best practices in:

Ponseti method of clubfoot management

Capacity building (trained staff)

Coordination, monitoring and evaluation of the program

Implementing the program in cost-effective way

Community sensitization

Counseling of parents

Vision in 3 years with Ministry of Health (MOH)

Both parties Cure International and MOH strive for early treatment to be accessible for every child born with clubfoot in the country, such that clubfoot will be eliminated as a permanent disability

Rwanda Clubfoot program goals

To assist the Rwandan Ministry of Health in strengthening the Rwandan health system by supporting the mentioned health facilities in their respective rehabilitation services.

To increase the knowledge of physiotherapists, Medical doctors and orthopaedic staff in the above mentioned hospitals through the trainings about management of clubfoot deformity by Ponseti technique with other supporting stakeholders

To raise public awareness on early childhood clubfoot screening program for detection, diagnosis and treatment where clubfoot centers are located in the country through all channel of media.

Provide Counselors who will work with parents to ensure clinic visits and prevent dropouts.

Support parents from poor families to access on the treatment

Parents accompaniment and advice to accomplish the treatment timeline

Some of achievements

Since 2009, more than 4700 children with clubfoot have been treated in the above hospitals using Ponseti technique,279 Health professionals have been trained about clubfoot treatment using Ponseti technique and 37 counsellors have been trained for parent’s education.

Image 6: Parent education by the trained counselor

Activities

Treating children with clubfoot using Ponseti technics ( Providing treatment supplies, treatment fees)

Organize a regional training of trainers (TTT) on club foot management using ponseti method

Train health care professionals in club foot management using ponseti method
Train counselors

Produce and distribute video CDs to the 22Hospitals and 264 health centres

Broadcast clubfoot program activities via public radios

Organize a World clubfoot day event

Educate health professional of health centres on early detection and referral of clubfoot cases

Integrate Community Health workers (CHWs) in charge of maternal and child health in community outreach activities

Supervise Hospitals

Data collection , analysis and reporting

Organise patients follow up through homes visits

Partners

Ministry of Health /RBC

National Council of Persons with Disabilities (NCPD)

National Commission of Children (NCC)

22 hospitals

COSECSA Oxford Orthopedic Link & Africa clubfoot Training Project

Rwanda Broadcasting Agency (RBA)

Churches

Private pharmacies

Ways of awareness

Posters

Radio spot

Stakeholders meetings/Symposium

Online newspaper/media

Patient stories

Brochures

Integration of Community health Worker (CHWs), Local leaders and pastors

Distribution of clubfoot DVDs in hospitals and health centers

Treatment cost of 1 case of clubfoot

In many LMICs, the price of treatment combined with the cost of transportation and the time away from income-generating activities is often more than most families can afford.

From the research conducted by Hussein et al in LMIC (Pakistan) published in 2014, the average per-patient cost was $349 (Rwf 288,972) for the Ponseti method and $810 (Rwf 670,680) for patients treated surgically. The direct household expenditure was $154(Rwf 127,512) and $314 (Rwf 259,992) for the Ponseti and surgical methods, respectively. The majority of the costs were incurred pre-diagnosis and after inadequate treatment, with the largest proportion spent on transportation, material, and fee for service. [https://www.ncbi.nlm.nih.gov/pubmed/24711155 visited on Dec 3rd 2017]

Plan for non cure clinics in the future

In collaboration with Centre de Chirurgie Orthopédique Pédiatrique et Réhabilitation, Sainte Marie de Rilima, Cure International trains the health Professionals from Clinics which are directly supported by Cure International. This will continue.

We are planning to open new clubfoot clinic in partnership with HVP Gatagara in Nyanza district since July 2017

Challenges

Low level of awareness in the community

Turnover of health professionals

Lack of clubfoot oriented researches to generate evidence based and disaggregated data on clubfoot in Rwanda

Long duration of treatment (up to 5 years) that may cause drop outs

Referral issues of complicated cases to specialized Clinics which are not using Mituelle de sante

Coverage of transport for patients for the frequent visits

Contribution of MOH in achievement

The collaboration between MOH and Cure International is well established to provide policies and strategies guidance, to facilitate Cure International to import work related materials,

Cooperate and assist Cure International for Licenses acquisition.


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