ORIGINAL ARTICLE: NUTRITION
Travelling With Children on Home Parenteral Nutrition Cecilia Mantegazza, Vanessa La Vela, Susan Hill, and Jutta Ko¨glmeier ABSTRACT Background: Home parenteral nutrition (HPN) is an established therapy in children with intestinal failure. Parenteral nutrition (PN) management allows most paediatric patients to participate in age-appropriate activities; however, HPN may lead to significant restrictions, particularly going on holiday. We aimed to identify sociodemographic and illness-specific variables that influence if and how families with children on HPN travel. Methods: A standardised questionnaire was sent to all 40 children on HPN within a large tertiary intestinal failure centre in the United Kingdom. Depending on whether the family had/had not been on holiday since their child had started HPN, questions were asked to understand the reasons for not travelling or to gather information about individual travel experiences. Results: A total of 30 children were enrolled, 20 of 30 went at least once on holiday, and 5 of 30 travelled more than once per year, 70% travelled outside Britain. Going on vacation was more common, the longer the child had been on HPN (P ¼ 0.022); hours spent on PN tolerance of enteral feeds or the child’s age did not influence travel behaviour; 80% of parents who went on vacation had a good/worthy experience, 95% would travel again. The biggest reported obstacle was the transportation of PN bags. Ten families sacrificed a holiday over fear that it may be difficult to arrange or because of the child’s unstable medical condition. Conclusions: A significant proportion of families chose to go on holiday away from home despite their child being on HPN. The experience is considered good by most. Key Words: children, home parenteral nutrition, intestinal failure, travelling
(JPGN 2016;62: 145–149)
H
ome parenteral nutrition (HPN) is a well-established practice in children with intestinal failure (IF) (1,2). At home the child and family are encouraged to enjoy as normal a life as possible. Sepsis rates are significantly reduced on HPN (3) and quality of life is improved compared with children receiving inpatient parenteral nutrition (PN) (4,5). As PN solution is usually infused overnight, during the day the young patient is free to move around like any other child. Children can go to school and are allowed to participate in physical exercise as part of the normal curriculum. As many age-appropriate activities are possible, HPN Received March 24, 2015; accepted June 25, 2015. From the Department of Paediatric Gastroenterology, Division of Nutrition and Intestinal Rehabilitation, Great Ormond Street Hospital for Children, London, United Kingdom. Address correspondence and reprint requests to Cecilia Mantegazza, Department of Paediatric Gastroenterology, Division of Nutrition and Intestinal Rehabilitation, Great Ormond Street Hospital for Children, Great Ormond St, London WC1N 3JH, UK (e-mail: cecimante@hot mail.com). The authors report no conflicts of interest. Copyright # 2015 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition DOI: 10.1097/MPG.0000000000000896
JPGN
Volume 62, Number 1, January 2016
What Is Known
HPN is used in children with IF and allows for normal growth and development. Quality of life is improved compared with hospital PN, but life is still restricted. Going on holiday may be challenging.
What Is New
Vacations were more common the longer the child had been on HPN. Most families had a good experience. The biggest obstacle encountered was the transport of the extra luggage required. Medical condition, parenteral concerns, and financial problems were reasons for deciding against travelling.
compared with hospital PN results in a significant improvement of the patient’s overall sense of well-being (6). HPN may, however, impose significant restrictions on the child’s daily life such as school trips with an overnight stay or going on holiday. As a consequence the entire family can be affected (7). In recent years, there has been an increasing interest in understanding the relation between tourism and health (8). Vacations are said to positively influence personal well-being (9). Reduced physical health and disability can negatively influence the ability to travel (10,11). Before HPN became available patients with IF were restricted in their mobility and a holiday away from home was unimaginable. Modern PN management has helped patients on HPN to become full members of our mobile society with a desire to travel the world in a similar way to their healthy peers. In Britain home care companies responsible for the compounding of PN make arrangements for the PN bags to be delivered to a holiday destination. PINNT (Patients on Intravenous and Nasogastric Nutrition Therapy), a UK-based support group for patients receiving enteral and parenteral nutrition, is offering useful advice for adults wishing to travel with an artificial feeding device (12). Little information is, however, available for families travelling with children on HPN. We were keen to get more information from our group of patients to get a better understanding if and how they go on vacation, to learn from their experience with the aim to use this knowledge to advise other parents in the future.
METHODS At the time of the study, 40 children were enrolled into the HPN program at Great Ormond Street Hospital. Written information was sent to all families before their next hospital visit and consent obtained on the day of the clinic consultation. A questionnaire designed by the authors was used to collect information and handed out to all patients attending the outpatient clinic
145
Copyright 2015 by ESPGHAN and NASPGHAN. Unauthorized reproduction of this article is prohibited.
Mantegazza et al
JPGN
Volume 62, Number 1, January 2016
TABLE 1. Population characteristics and comparison with children not included in the study
Age, mo Females/males Children receiving EF Median duration of HPN in months Daily hours on PN Short bowel syndrome Enteropathy Motility disorder Epithelial disorder
Children on HPN included
Children on HPN not included
P
96 16/14 18 42 12 10 6 10 4
82 6/4 5 17 14 0 1 8 1
0.7 0.73 0.6 0.107 0.129
EF ¼ enteral feed; HPN ¼ home parenteral nutrition; PN ¼ parenteral nutrition.
between June and July 2014, who had consented to their child entering the study. The questionnaire was completed by the child’s mother and/ or father after the clinic consultation. The patient’s age and sex, underlying disease, time in months spent on HPN, daily hours of PN and, when appropriate, oral and enteral feeds (EF) given were documented. The parents were asked whether they had been on holiday with their child since he or she had been started on HPN. Depending on whether the answer was yes or no more detailed information about the reasons for not travelling or the individual travel experience was recorded. The families that managed to go on holiday were asked how long they waited after their child had started HPN before they went on their first holiday and how many times they managed to be away from home since. Those whose travel experience was limited to just 1 holiday were asked why they had chosen not to go away more often. Information about the time required to plan and organise the holiday, the chosen destination (United Kingdom [UK] or/and abroad), the length of stay and mode of travel (eg, by car, aeroplane, train, ferry, other) was collected. Families were also questioned on the extra luggage required, whether the type of accommodation chosen was influenced by the child being on PN (eg, self-catering, all-inclusive hotel, bed and breakfast, camping), whether a fridge was provided to store the HPN bags and whether the local climate played a role in deciding where to go. We also asked whether the child on HPN was allowed to go swimming. In addition, we were keen to find out whether the parents felt that they received enough support from their home service provider and whether they contacted other agencies (eg, a charitable organisation) for support. Those who had travelled by plane were asked whether they had any problems at the airport or during the flight. All data were collected on an Excel spread sheet and analysed with Primit. Continuous variables were expressed as median and, if applicable, standard deviation (SD), and comparison made thorough the Mann-Whitney U test or Fisher exact test when appropriate. A P value
Travelling With Children on Home Parenteral Nutrition Cecilia Mantegazza, Vanessa La Vela, Susan Hill, and Jutta Ko¨glmeier ABSTRACT Background: Home parenteral nutrition (HPN) is an established therapy in children with intestinal failure. Parenteral nutrition (PN) management allows most paediatric patients to participate in age-appropriate activities; however, HPN may lead to significant restrictions, particularly going on holiday. We aimed to identify sociodemographic and illness-specific variables that influence if and how families with children on HPN travel. Methods: A standardised questionnaire was sent to all 40 children on HPN within a large tertiary intestinal failure centre in the United Kingdom. Depending on whether the family had/had not been on holiday since their child had started HPN, questions were asked to understand the reasons for not travelling or to gather information about individual travel experiences. Results: A total of 30 children were enrolled, 20 of 30 went at least once on holiday, and 5 of 30 travelled more than once per year, 70% travelled outside Britain. Going on vacation was more common, the longer the child had been on HPN (P ¼ 0.022); hours spent on PN tolerance of enteral feeds or the child’s age did not influence travel behaviour; 80% of parents who went on vacation had a good/worthy experience, 95% would travel again. The biggest reported obstacle was the transportation of PN bags. Ten families sacrificed a holiday over fear that it may be difficult to arrange or because of the child’s unstable medical condition. Conclusions: A significant proportion of families chose to go on holiday away from home despite their child being on HPN. The experience is considered good by most. Key Words: children, home parenteral nutrition, intestinal failure, travelling
(JPGN 2016;62: 145–149)
H
ome parenteral nutrition (HPN) is a well-established practice in children with intestinal failure (IF) (1,2). At home the child and family are encouraged to enjoy as normal a life as possible. Sepsis rates are significantly reduced on HPN (3) and quality of life is improved compared with children receiving inpatient parenteral nutrition (PN) (4,5). As PN solution is usually infused overnight, during the day the young patient is free to move around like any other child. Children can go to school and are allowed to participate in physical exercise as part of the normal curriculum. As many age-appropriate activities are possible, HPN Received March 24, 2015; accepted June 25, 2015. From the Department of Paediatric Gastroenterology, Division of Nutrition and Intestinal Rehabilitation, Great Ormond Street Hospital for Children, London, United Kingdom. Address correspondence and reprint requests to Cecilia Mantegazza, Department of Paediatric Gastroenterology, Division of Nutrition and Intestinal Rehabilitation, Great Ormond Street Hospital for Children, Great Ormond St, London WC1N 3JH, UK (e-mail: cecimante@hot mail.com). The authors report no conflicts of interest. Copyright # 2015 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition DOI: 10.1097/MPG.0000000000000896
JPGN
Volume 62, Number 1, January 2016
What Is Known
HPN is used in children with IF and allows for normal growth and development. Quality of life is improved compared with hospital PN, but life is still restricted. Going on holiday may be challenging.
What Is New
Vacations were more common the longer the child had been on HPN. Most families had a good experience. The biggest obstacle encountered was the transport of the extra luggage required. Medical condition, parenteral concerns, and financial problems were reasons for deciding against travelling.
compared with hospital PN results in a significant improvement of the patient’s overall sense of well-being (6). HPN may, however, impose significant restrictions on the child’s daily life such as school trips with an overnight stay or going on holiday. As a consequence the entire family can be affected (7). In recent years, there has been an increasing interest in understanding the relation between tourism and health (8). Vacations are said to positively influence personal well-being (9). Reduced physical health and disability can negatively influence the ability to travel (10,11). Before HPN became available patients with IF were restricted in their mobility and a holiday away from home was unimaginable. Modern PN management has helped patients on HPN to become full members of our mobile society with a desire to travel the world in a similar way to their healthy peers. In Britain home care companies responsible for the compounding of PN make arrangements for the PN bags to be delivered to a holiday destination. PINNT (Patients on Intravenous and Nasogastric Nutrition Therapy), a UK-based support group for patients receiving enteral and parenteral nutrition, is offering useful advice for adults wishing to travel with an artificial feeding device (12). Little information is, however, available for families travelling with children on HPN. We were keen to get more information from our group of patients to get a better understanding if and how they go on vacation, to learn from their experience with the aim to use this knowledge to advise other parents in the future.
METHODS At the time of the study, 40 children were enrolled into the HPN program at Great Ormond Street Hospital. Written information was sent to all families before their next hospital visit and consent obtained on the day of the clinic consultation. A questionnaire designed by the authors was used to collect information and handed out to all patients attending the outpatient clinic
145
Copyright 2015 by ESPGHAN and NASPGHAN. Unauthorized reproduction of this article is prohibited.
Mantegazza et al
JPGN
Volume 62, Number 1, January 2016
TABLE 1. Population characteristics and comparison with children not included in the study
Age, mo Females/males Children receiving EF Median duration of HPN in months Daily hours on PN Short bowel syndrome Enteropathy Motility disorder Epithelial disorder
Children on HPN included
Children on HPN not included
P
96 16/14 18 42 12 10 6 10 4
82 6/4 5 17 14 0 1 8 1
0.7 0.73 0.6 0.107 0.129
EF ¼ enteral feed; HPN ¼ home parenteral nutrition; PN ¼ parenteral nutrition.
between June and July 2014, who had consented to their child entering the study. The questionnaire was completed by the child’s mother and/ or father after the clinic consultation. The patient’s age and sex, underlying disease, time in months spent on HPN, daily hours of PN and, when appropriate, oral and enteral feeds (EF) given were documented. The parents were asked whether they had been on holiday with their child since he or she had been started on HPN. Depending on whether the answer was yes or no more detailed information about the reasons for not travelling or the individual travel experience was recorded. The families that managed to go on holiday were asked how long they waited after their child had started HPN before they went on their first holiday and how many times they managed to be away from home since. Those whose travel experience was limited to just 1 holiday were asked why they had chosen not to go away more often. Information about the time required to plan and organise the holiday, the chosen destination (United Kingdom [UK] or/and abroad), the length of stay and mode of travel (eg, by car, aeroplane, train, ferry, other) was collected. Families were also questioned on the extra luggage required, whether the type of accommodation chosen was influenced by the child being on PN (eg, self-catering, all-inclusive hotel, bed and breakfast, camping), whether a fridge was provided to store the HPN bags and whether the local climate played a role in deciding where to go. We also asked whether the child on HPN was allowed to go swimming. In addition, we were keen to find out whether the parents felt that they received enough support from their home service provider and whether they contacted other agencies (eg, a charitable organisation) for support. Those who had travelled by plane were asked whether they had any problems at the airport or during the flight. All data were collected on an Excel spread sheet and analysed with Primit. Continuous variables were expressed as median and, if applicable, standard deviation (SD), and comparison made thorough the Mann-Whitney U test or Fisher exact test when appropriate. A P value
