7 minute read
Getting Better Sleep When Using Parenteral Nutrition at Home
Hassan S. Dashti, PhD, RD, and Adline Rahmoune, BS
Importance of sleep
Getting enough hours of restful sleep is necessary for a person's physical and mental health. It is well documented that sleep plays an important role in regulating mood and supporting brain activity. Studies have linked short sleep duration with metabolic disorders, including diabetes and heart disease, and psychiatric disorders such as depression. Unfortunately, sleep disturbance is common among consumers of at-home parenteral nutrition (HPN). This is especially true when consumers run their infusions at night (Dashti, Godbole, et al. 2022).
Our studies, which were presented at the 2022 and 2023 Oley annual conferences and published in the Journal of Parenteral and Enteral Nutrition, indicate that most HPN consumers experience sleep disruption and that HPN consumers often do not meet recommendations for sleep duration and quality (Dashti, Godbole, et al. 2022). Those goals, based on National Sleep Foundation recommendations, include getting seven to nine hours of sleep per day and spending no more than twenty minutes awake after initially falling asleep.
HPN consumers who run their infusions at night coinciding with their sleep are at the highest risk of not getting adequate sleep (Dashti, Rhyner, et al. 2023). According to our research, the most common factors contributing to sleep disruption are waking up to use the bathroom (nocturnal polyuria), noisy pump alarms, night sweats, and anxiety. However, running HPN at night is standard (almost 85 percent of HPN consumers do it) because it is convenient and does not limit activity during the daytime (Dashti, Rhyner, et al. 2023). Daytime mobility comes at the cost of restful sleep.
Although sleep problems with PN are well recognized, consumers almost never receive guidance on how best to sleep when discharged on HPN (Barrera, Poindexter, et al. 2023). In addition, existing healthy sleep recommendations from professional organizations, such as the Centers for Disease Control (CDC) or the Sleep Research Society, are generally not applicable to HPN consumers as they do not address medical equipment and presume that all people eat by mouth. For that reason, in 2023, the American Academy of Sleep Medicine provided funding to support the sleep of HPN consumers by generating the first set of sleep resources tailored for HPN adult consumers (Rahmoune, Spadola, et al. 2024).
The Community Sleep Health Study
Led by Dr. Hassan S. Dashti at the Massachusetts General Hospital, Harvard Medical School in Boston, Massachusetts, the HPN community sleep health study—the results of which were recently published (Rahmoune, Spadola, et al. 2024)—shared the first set of healthy sleep practices for HPN consumers. The community-based participatory research study included a multidisciplinary research team of sleep and nutrition scientists and clinicians, and HPN consumers who shared their lived experience with sleep while consuming HPN. The project started in February 2023 and took one year to complete.
There were multiple steps involved in creating the sleep resources. The core research team, which was composed of two HPN consumers and five scientists, first compiled an extensive list of existing sleep recommendations and carefully evaluated whether each recommendation was relevant to HPN consumers. Then, online focus groups were carried out with nine HPN consumers and eleven clinicians caring for HPN consumers to learn more about sleep firsthand from the community. The literature search and the focus group findings led to the first draft of recommendations. This draft was reviewed by ten additional members of the community to determine whether each item was useful and whether it improved sleep knowledge.
This information was used to refine the list of recommendations and to produce the final version of the healthy sleep practices handout for HPN consumers in English and Spanish.
A more in-depth description of the study can be found in the published study, available for free, on the website of the journal Current Developments in Nutrition (Rahmoune, Spadola, et al. 2024).
Sleep resources for HPN consumers
The final HPN sleep resources consist of thirty-six recommendations divided across four sections: getting ready for bed, preparing the bedroom for sleep, daytime behaviors, and overall strategies for better sleep, followed by a sleep diary. The recommendations partly include general guidance on how best to sleep based on known sleep hygiene guidelines. These, for example, include recommending seven to nine hours of sleep per day, maintaining a consistent sleep schedule by going to bed around the same time each night, following a relaxing bedtime routine, and avoiding electronic devices before bed.
The handouts also address unique sleep challenges often faced by HPN consumers, such as frequent urination at night, noise and light from infusion pumps, infusion schedules, and medication interference. These include recommendations related to adopting a consistent HPN infusion schedule whenever possible, slower HPN infusion rates (Chichester, Rahmoune, Dashti, 2024), emptying the bladder or ostomy bag before bed, having earlier mealtimes for consumers who eat by mouth, and creating a clutter-free bedroom environment to make trips to the bathroom easier and safer.
For some consumers, daytime infusions or fluids can limit sleep disruption. Have you considered running your HPN during the daytime? In our new study, published in the American Journal of Clinical Nutrition, we demonstrated that running PN at home during the daytime is safe and helps consumers have better quality of sleep because they wake up less frequently (Dashti, Leong, et al. 2023). We recently shared the full study findings with HPN consumers in a video on YouTube (visit youtube.com/ watch?v=Ia7DJjb1igo).
Lastly, a sleep diary is also included in the handout so consumers can track their sleep and infusions, and work with their healthcare team to address sleep concerns. Remember, always discuss your interest in potentially adjusting your HPN regimen with your medical team first. We hope that these handouts help new HPN consumers get better sleep.
Hassan S. Dashti, PhD, RD, and Adline Rahmoune, BS, are affiliated with the Department of Anesthesia, Critical Care and Pain Medicine, Massachusetts General Hospital and Harvard Medical School, Boston, Massachusetts.
References
Barrera R, Poindexter K, Tucker C, Winkler MF, Dashti HS. Amplifying the lived experiences of parenteral nutrition consumers through the thematic analysis of social media posts. Nutr Clin Pract. E-pub December 2023. doi:10.1002/ncp.11097
Chichester S, Rahmoune A, Dashti HS. Home parenteral nutrition, sleep patterns, and depressive symptoms: Secondary analysis of cross-sectional data. J Parenter Enteral Nutr. April 2024. doi:10.1002/ jpen.2631
Dashti HS, Cade BE, Stutaite G, Saxena R, Redline S, Karlson EW. Sleep health, diseases, and pain syndromes: findings from an electronic health record biobank. Sleep. 2021;44(3). doi:10.1093/sleep/zsaa189
Dashti HS, Godbole M, Chen A, et al. Sleep patterns of patients receiving home parenteral nutrition: A home-based observational study. J Parenter Enteral Nutr. 2022;46(7):1699-1708. doi: 10.1002/jpen.2346
Dashti HS, Leong A, Mogensen KM, et al. Glycemic and sleep effects of daytime compared with those of overnight infusions of home parenteral nutrition in adults with short bowel syndrome: A quasi-experimental pilot trial. Am J Clin Nutr. Epub December 2023. doi:10.1016/j. ajcnut.2023.11.016
Dashti HS, Rhyner JJ, Mogensen KM, et al. Infusion timing and sleep habits of adults receiving home parenteral and enteral nutrition: A patient oriented survey study. J Parenter Enteral Nutr. 2023;47(1):130-139. doi: 10.1002/jpen.2446
Rahmoune A, Spadola C, Johnson B, et al. Healthy sleep practices for consumers of home total parenteral nutrition: a mixed-methods community-based participatory study. Current Developments in Nutrition. April 2024:102155. doi: 10.1016/j.cdnut.2024.102155
