Discontinuation of tube feeding in young children by hunger provocation.

OBJECTIVES: Pathological food refusal (PFR) is not rare in young children with chronic conditions requiring prolonged tube feeding. We investigated whether these children could be weaned from tube feeding with a multidisciplinary hunger provocation program. PATIENTS AND METHODS: The study included children younger than 2 years with PFR who had been dependent on tube feeding for at least 3 months. They followed a multidisciplinary in-hospital program. During step 1, only 50% of the normal allowance was given by tube. During step 2, oral feeding was offered and completed up to 50% with tube feeding afterwards. During step 3, supplementary tube feeding was given at night. During step 4, only insensible loss (400 mL/m2), was replaced. When the child had started eating, parents took over feeding (step 5). Primary endpoints were eating without tube feeding while gaining weight at 3 and 6 months after discharge. RESULTS: Ten children (age 9-21 months; 7 girls) were exclusively tube fed for 7 to 19 months. Hospital stay lasted 9 to 33 days (mean 17.3 days). All children but 1 remained in clinically stable condition and started to eat within 1 week. Weight loss was 3.7% to 15.6% (mean 9.2%); in 1 child, the program was discontinued because of excessive weight loss. At follow-up after 3 and 6 months, 9 of 10 and 8 of 10 children, respectively, were eating adequately and gaining weight without tube feeding. Two children with recurrent infections resumed partial (25%-50%) tube feeding during follow-up. CONCLUSIONS: The multidisciplinary hunger provocation program seems to be a promising method to promote discontinuation of tube feeding in young children.

Development and implementation of a patient reported outcome intervention (QLIC-ON PROfile) in clinical paediatric oncology practice.

OBJECTIVE: The use of patient reported outcomes (PRO) in routine clinical practice is becoming increasingly common, but there is limited knowledge about the development and implementation of PRO. The objective of the current paper is to provide a thorough description of the development and implementation of a PRO on health related quality of life (HRQOL)--the QLIC-ON PROfile--in clinical paediatric oncology practice. METHODS: The development of the QLIC-ON PROfile is explained by elucidating important choices: the HRQOL instrument, the professional that uses the QLIC-ON PROfile, the optimal form of HRQOL feedback and whether or not a clinically important difference is reported. The description of the implementation of the QLIC-ON PROfile focuses on the education and commitment of the professional that uses the QLIC-ON PROfile. Study design and outcome measures are also elaborated on. RESULTS: Important considerations regarding the development and implementation of PRO interventions are reported. These considerations have also resulted in educational material. CONCLUSION: Our study adds to current knowledge of PRO research. This paper can be used as a practical guide for researchers and other professionals, who are interested in setting up PRO interventions in any clinical setting.