Standard of Care for Patients With Cleft Lip and Palate in India—A Questionnaire-Based Study

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Abstract

A national survey of cleft teams was undertaken to evaluate the current standard of care for patients with cleft lip and palate (CLP) in India as a part of Cleft Care India study.

This was a cross-sectional questionnaire-based study.

Cleft teams across India attending the 19th Annual Conference of the Indian Society of Cleft Lip and Palate were invited to complete the questionnaire. The questionnaire consisted of 18 questions that included demographics, institutional details, patient protocols, surgical technique, rehabilitation facilities, and accessibility. The data are descriptively reported.

A total of 112 centers completed the survey. Nongovernment organizations funded 87% of the cleft centers and 8% did not receive any funding. Only 39% of the centers had centralized cleft services providing multidisciplinary care. Speech therapy was provided either onsite or through referral at 90% of the centers, whereas audiology was provided only at 4% of centers. Feeding advice was routinely provided in 52% of centers. Millard technique was the most preferred technique for unilateral cleft lip repair (66%). The 2-flap technique (37%) and pharyngeal flap (48%) were the most common surgeries for cleft palate and pharyngoplasty, respectively. Although 54% of centers reported their patients to be interested in comprehensive care, 43% reported that their patients only wanted surgical correction.

There is wide diversity in access to cleft care and clinical practices across centers in India. Further work is needed to evaluate the quality of care by assessing outcomes of centers treating patients with CLP.

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Long-Lasting Effects of Undernutrition

Vinicius J. B. Martins, Telma Toledo Florêncio, Luciane P. Grillo … (2011)

Undernutrition is one of the most important public health problems, affecting more than 900 million individuals around the World. It is responsible for the highest mortality rate in children and has long-lasting physiologic effects, including an increased susceptibility to fat accumulation mostly in the central region of the body, lower fat oxidation, lower resting and postprandial energy expenditure, insulin resistance in adulthood, hypertension, dyslipidaemia and a reduced capacity for manual work, among other impairments. Marked changes in the function of the autonomic nervous system have been described in undernourished experimental animals. Some of these effects seem to be epigenetic, passing on to the next generation. Undernutrition in children has been linked to poor mental development and school achievement as well as behavioural abnormalities. However, there is still a debate in the literature regarding whether some of these effects are permanent or reversible. Stunted children who had experienced catch-up growth had verbal vocabulary and quantitative test scores that did not differ from children who were not stunted. Children treated before 6 years of age in day-hospitals and who recovered in weight and height have normal body compositions, bone mineral densities and insulin production and sensitivity.

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W Shaw, G Semb, Pierre Nelson … (2001)

The original Eurocleft project, a European intercentre comparison study, revealed dramatic differences in outcome, which were a powerful stimulus for improvement in the services of respective teams. The study developed a preliminary methodology to compare practices and the potential for wider European collaboration including opportunities for the promotion of clinical trials and intercentre comparison was recognized by the European Commission. Therefore, the project: 'Standards of Care for Cleft Lip and Palate in Europe: Eurocleft' ran between 1996 and 2000 and aimed to promote a broad uplift in the quality of care and research in the area of cleft lip and palate.

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Parents' experiences of caring for a child with a cleft lip and/or palate: a review of the literature

P. Nelson, A-M Glenny, S. Kirk … (2012)

This review brings together for the first time the existing quantitative and qualitative research evidence about the experiences of parents caring for a child with a cleft. It summarizes salient themes on the emotional, social and service-related experiences of parents and critiques the literature to date, comparing it with wider, selected literature from the field of children's long-term conditions, including disability. The review suggests that there are similarities and differences between the literatures, in terms of research focus and approach. Similarities are found across children's conditions in the perspectives of parents on emotional, social and service-related aspects, although much of the cleft literature is focused on the early stages of children's lives. However, the quality of cleft research to date about parents' experiences has also been variable, with a narrow emphasis on cross-sectional, deficit-orientated psychological approaches focused mainly on mothers. Despite a substantial literature, little qualitative research has examined parents' perspectives in-depth, particularly about their child's treatment journey. This contrasts with the wider children's literature, which has traditionally drawn not only on psychological approaches but also on the broader perspectives of sociology, social policy, nursing and health services research, using both qualitative and quantitative methods, often in integrated ways. Such approaches have been able to highlight a greater range of experiences from both mothers and fathers, about caring for a child with a long-term condition and views about treatment. The review identifies a lack of comparable research in the cleft field to examine parents' experiences and needs at different stages of their children's lives. Above all, research is needed to investigate how both mothers and fathers might experience the long-term and complex treatment journey as children become older and to elicit their views about decision making for cleft treatments, particularly elective surgeries.