Adherence in Clubfoot Treatment

Original Editor - Africa Clubfoot Training Team as part of ICRC and GCI Clubfoot Content Development Project

Top Contributors - Naomi O'Reilly, Kim Jackson, Rachael Lowe, Simisola Ajeyalemi, Meaghan Rieke, Olajumoke Ogunleye, Oyemi Sillo and Rucha Gadgil

Introduction

The Ponseti method has become the gold standard in isolated clubfoot care and is associated with fewer surgical revisions, decreased cost, and most importantly, better long-term functional outcomes compared with primary soft tissue release surgery. However for good outcomes it requires rigid adherence to the intervention which consists of specific serial manipulations, casting and tenotomy of the Achilles tendon, followed by abduction bracing of the affected foot or feet until the child is 2 to 4 years old. Health care professionals must not deviate from the protocol and and parents and caregivers are required to give the long-term commitment in order to achieve a successful outcome.

Non-adherence is one of the key reasons for failure of clubfoot treatment. This non-adherence can relate to health care practitioners not strictly following the Ponseti regime of interventions, but more commonly refers to poor adherence by parents and caregivers which is often as a result of the many barriers faced by parents and caregivers.

Adherence and health care professionals

Miller et al reported that rigid commitment to the Ponseti method in the conservative treatment of patients with isolated clubfoot was associated with a lower risk of subsequent unplanned surgical intervention. They reported that clinics that have implemented variations of the Ponseti technique have had less than optimal results, including the likelihood of converting to a surgical approach, ranging from 10% to 40%.

To address deviations from the Ponseti method the following things may may considered:

1. a good team including a care coordinator, dedicated cast technicians and orthotists, a team commitment among providers, and emphasis on continuity of care. 
2. a single provider coordinating care in a clubfoot program, this has been reported to result in a low occurrence of major surgical events.
3. adequate practical skills training in the Ponseti method before clinical application and regular ongoing training and mentoring by a qualified person.
4. adequate support systems in place for parents and caregivers.

Adherence and parents / caregivers

Parents and caregivers have a major role treating the child with clubfoot. Their responsibility includes regular attendance at clinic and long term brace application. According to Göksan et al, patient and family adherence to brace use is a common problem, as non-adherence is directly related to relapse. However there are many factors that may contribute to parents and caregivers not adhering to the Ponseti treatment protocol. These may include:

• Beliefs and stigma including community / family pressure to consult traditional healers and/or to discontinue treatment
• Lack of confidence in treatment
• Lack of understanding about treatment and the full protocol
• Believe treatment is finished after casting
• Baby cries with cast or braces on
• Poverty - no money for transport or treatment costs
• Long distance to clinic
• Lack of support by fathers / families
• Other responsibilities e.g. child care, work
• Poor communication from and relationships with health workers
• Cultural practices e.g. nomadic tribes, military families who move regularly
• Impatience
• Poor appointment tracking and follow-up after missed appointments
• Incorrect prescription of braces: foot not yet corrected, shoe does not fit well
• Lack of clear instructions on braces: importance, how to fit, wearing protocol

To over come these barriers health care professionals can do a lot to promote adherence:

1. Recognise that parents are the most important team members - they must feel they are partners in the treatment process
2. Understand that treatment is difficult for parents
3. Spend time with parents. Build relationship, teach and answer questions
4. Parent education and counselling
5. Communicate well and check parents understand what you have said
6. Target key risk times which include the end of casting, start of bracing and start of night bracing
7. Provide simple written information
8. Treat clubfoot well as this raises family’s confidence in staff and treatment
9. Encourage fathers & family members to participate in treatment
10. Help families problem-solve common problems
11. Support costs of treatment
12. Ensure good appointment scheduling, tracking, and follow-up
13. Link families with community agents that may help such as community health workers, social entities, NGOs and faith-based organisations
14. Promote family-friendly clinics
15. Parent advisors / counsellors
16. Designate a team member specifically for parent education and support. Clinicians are often too busy for this, alternatives may be parents or support workers.