CFW Programs

Support this project:

February 21, 2005

New Delhi, India

Summary (Information provided by Christine Noke, Program Director, CFW)
As Program Director for CF Worldwide (CFW), I had the privilege of attending a CF conference in New Delhi on February 19th-21st. The Conference, hosted by Dr. S.K. Kabra of AIIMS, Hafeez Ahmed, representing the CF South Asian Trust and by Solvay Pharma, India, offered both a Medical and Scientific agenda for professionals and a Lay conference for parents of children with CF. For CFW, the conference provided an opportunity to seek insight and explore the possibilities of assisting India in improving the quality of life and life expectancy for people born with CF.

There are many program considerations to be addressed prior to CFW making a commitment to directly work with India to improve CF care, however it is clear that there exists an enormous possibility of reaching thousands who are suffering from CF. Forms of support can assist at many various levels and address specific needs. My broad perspective includes the following observations. In general, the medical professionals are trained and experienced to deal with chronic disease and could adopt a standard of CF care with very little problem. Many families and medical professionals can access information by using the internet. There are many parents who are able to afford necessary medication but lack the access to CF specialists (doctors, nurses, trained physiotherapists, dietitians, etc.). Sadly, there are also a large percentage of patients who do not have these same opportunities and will need sustainable support in order to improve the existing situation.

A long-term outcome for CFW will be to focus on the development of a CF Association working to reach all patients who suffer in India. After meeting with many of the stakeholders in CF care at the conference, it was apparent that there were positive inroads already being made towards this directive. The following report is an initial assessment of needs with defined objectives by medical professionals, parents and community members now working to improve CF care in India. The intermediate approach has been defined by ICFPWA, CFW, and several named stakeholders.

Assessment of Needs

Does India meet the CFW criteria for project development in a developing country?

*The term “developing country” refers to those countries where CF is known to exist, and thought to be much more common than is appreciated by either the medical profession or the general public, and where CF services are either non existent or in the early stages of development. Similarly, the developed countries in a CF sense are those in which CF is usually rapidly diagnosed and appropriately treated. (WHO,ICFMA 1996 )

India does in theory meet the CFW program criteria but to develop any long-term projects a systematic situation analysis needs to be conducted to determine the following:

• The needs of the CF patients and their families
• The motives and expectations of CFW and the local organization
• The responsibilities and the role of both CFW and the local organization
• All stakeholders; their responsibilities, resources and expectations
• Long-term objectives of the partnership
• Local resources and capacities
• Availability of external resources and capacities
• Cultural differences that might cause problems

Epidemiology
Exact details about the incidence of CF in India is unknown, but there are reasons to think that it is more common than previously reported.

Genotypes

DR Madhu Kabra has published in India her screening of 955 consecutive cord blood specimens for the DeltaF508 mutation. Four heterozygotes were identified in the study population. The screening of chromosomes among the 120 children attending AIIMS with a diagnosis of cystic fibrosis identified DeltaF508 in 19% of the 240 chromosomes tested. If we calculate the incidence of CF on the presumption that DeltaF508 accounts for 19% of all of the CF genes that occur.

India has a very wide spectrum of people with enormous differences in socio-economic status. Any family can seek a consultation with a pediatrician although patients seeing Dr. Kabra at his specialist respiratory clinic are referred on from general pediatricians first. Recommendations for care are FOC but patients have to use their own resources to pay for investigations and treatment. No 2 CF children are the same and each has their own unique range of problems. In India this is compounded by each persons unique socio-economic status and their access to available options for care for reasons of geography.

Malnutrition as a result of pancreatic insufficiency is the most common cause of early morbidity in CF. In the UK over 70% of children are diagnosed following presentation in infancy. At AIIMS the mean age at diagnosis is 54 months (3-154months). It is suspect that the majority of those affected are dieing of malnutrition and secondary respiratory complications before diagnosis in the first few years of life. Improved outcomes for this group of children would depend upon their access to appropriate treatment including in particular pancreatic enzyme replacement therapy plus the care of the multidisciplinary CF team.

The development of specialist centres has been the most important advance in the West to improve the care of CF children. Concentrating the care of those affected to specialists with the appropriate supporting staff and services would seem to be essential. Diagnostic services might usefully be located within these units.

Thought needs to be given to finding ways to ensure that teaching about the existence of CF in India is included in undergraduate training programmes. A database needs to be set up to collate information about diagnosed cases to better understand the Epidemiology across the country.

Sustainability will depend on getting critical numbers of children regularly attending specialist services. Important consideration will have to be given to ensuring regular follow-up occurs.One of the most significant changes in Dr. Kabra’s service to CF patients in India, after he visited Southampton for training, was the re-organization of his out-patient services so that children had booked appointments to come back on a specific date for follow-up. At the last visit he showed how he had taken things one step further and now organized a time and a date for each patient. In other programs in developing countries, it was simple things like this that made the biggest differences for the care of a recognized group of patients. This included the provision of out-patient case notes and the use of growth charts.

Back to Top

Objective

Main objectives for CFW to assist India include spreading awareness of CF in India, supporting activities that provide care for all CF families, and strengthening the development of the CF South Asian Trust. CFW will work with partners in India to increase the managerial, financial and advocacy skills of the ICFPWA and support the development of relationships with local NGO networks that target inherited chronic disease. We will also work to expand linkages between those local NGO’s and the public and private sectors throughout India and the international CF community.

Activities will emphasize strategic planning, spreading information among medical professionals and the lay society, while developing modules for long term program sustainability. Our approach includes strategies such as participatory planning, sub-grants to ICFPWA for capacity building and training of medical professionals, supporting and fostering educational conferences, networking and evaluations.

Approach

To begin working in India to support ICFPWA, CFW will construct a Program Logic Model defining how the program is expected to work, connecting various activities and functions with the social benefits they are intended to produce. These models will help to distinguish any theory failure from program failure. (Rossi 1999) Therefore, the Program Theory and Program Logic Model (PTLM) design requires focused development and analysis so that the project and its activities will lead to the desired outcomes. (See table 1 model example) The model also shows the activities, the input, the output and the short-term, intermediate and long-term outcomes.

In order to develop an action plan with outcomes identifiable and measurable, continued emphasis needs to be put on conducting a systematic situation analysis. The following table should be viewed as a draft representation of initial steps CFW could take in India in 2005. Dr. S.K Kabra and Hafeez Ahmed are currently working to construct a capacity building program with budgetary needs for consideration by CFW and the various stakeholders. Once this information is received and accepted, it can be formulated into the PTLM.

Identifying incidence in India (Epidemiology and Sweat Testing)

As part of the initial steps of spreading information and strengthening ICFPWA, we will work towards identifying the true incidence in India. Again, this data can be transferred into the program theory and logic model as a means of determining quantity of expected carriers and patients.

While the earliest clear medical descriptions date from the 1930’s, CF obviously existed prior to this date but was unrecognized. Its clinical characteristics individually resemble those of other diseases such as pneumonia, bronchiectasis, failure to thrive, and coeliac disease. Indeed, were these conditions are prevalent CF may still lie unrecognized. Moreover, if clinicians believe that CF is absent from their population they will not consider it in a differential diagnosis. A better awareness of and the increasing availability of diagnostic tests- the sweat test and/or DNA tests – frequently leads to the identification of a higher number of affected individuals. (WHO, ICFMA, ECFTN, ECFS 2004)

In the last two decades, CF has been increasingly diagnosed in Latin America, the Middle East, and populations derived from the Indian subcontinent that have emigrated to Western Europe, thus implying the presence of CF in significant numbers among the citizens of India and Pakistan who have remained in their homeland. (WHO, ICFMA, ECFTN, ECFS 2004)

More than a decade has passed since the CFTR gene was identified, and more than 1200 mutations have been reported. It is therefore timely to review and assess what is known about the Epidemiology of CF and its CF related disorders worldwide. (WHO, ICFMA, ECFTN, ECFS 2004)

There have been two proposed programs to begin identifying incidence/existing patients

Program I
Run an Epidemiology study carried out by Dr. Madhumita Kabra using AIIMS genetic department as the central point for data collection. Blood samples would be taken and screened from 100,000 people in regions throughout India, Sri Lanka and Bangladesh. (Details will be provided by Dr. M. Kabra)

Program II
Where significant under-diagnosis of CF is demonstrated, appropriate responses from governmental, international and professional bodies are needed to ensure the delivery of reliable diagnostics. A need for accurate diagnostics is present in India. Though some hospitals are reporting the use of Macroduct© sweat testing, and the use of “homemade” sweat testing devices, which have led to a level of diagnosis in some cases, this system should be improved. It will be imperative that appropriate diagnostic equipment is available throughout India as a means of eliminating falsified diagnosis and managing infant or early stage patient diagnosis.

The following points need to be considered to implement appropriate diagnostics via sweat testing in India;

Both of these proposed programs should be considered for support as a means to establishing quantitative data
that will theorize inputs, outputs and outcomes for future program development.

Stakeholders and Partners
In projects that seek to develop capacity, there are always various players with different interests and motives. At the beginning of a project, these different motives, needs, and expectations should be identified. If the different views and ideas are not recognized at the beginning, this may lead to problems during the implementation of any project. Objectives and strategies should be formulated with all the stakeholders. Working with a local organization is essential for the success of a project, but the “ins and outs” of the organizations should be known. Analysis of the culture, the skills and resources, objectives and goals of the local partner is therefore necessary. (N0RAD 1989; USAID 1993; Carvalho 1996)

CFW has identified the following stakeholders in CF care in India. An in-depth analysis needs to be conducted with all the stakeholder to identify motives, needs and expectations. The number of stakeholders and their activities will increase over the life of the program.

Conclusion

A high proportion of India's population continues to suffer and die from preventable infections, disease, pregnancy and childbirth related complications and under nutrition. At the same time new health threats are stretching the capacity of the health system to respond. An estimated 4 million Indians are living with HIV and the virus has spread beyond highly susceptible groups to the general population in some states, threatening to erase much of the social, economic and health gains since Independence.

Nearly 9% of children born in India will die before their 5th birthday and more than 50% of children under 5 are malnourished. These factors as well as many others will be large road-blocks that will need to be carefully considered and understood prior to the implementation of any CFW supported programs in India.