Abstract
A recent multicenter study published in Clinical Nutrition evaluated the impact of home parenteral nutrition (HPN) on the quality of life in individuals with chronic intestinal failure. The research, which spanned across nine UK-based HPN clinics, used the Parenteral Nutrition Impact Questionnaire (PNIQ) to determine how disease state, frequency of HPN infusions, and patient characteristics contributed to the patients’ quality of life (QoL). The study found that the need for more frequent HPN infusions negatively impacted QoL and that this effect varied based on the underlying disease. The study emphasizes the necessity of personalized care approaches and potential benefits of treatments that could reduce the HPN burden.
Introduction
For many individuals grappling with chronic intestinal failure, home parenteral nutrition (HPN) is not simply a treatment but a lifeline that allows them to carry on with their daily existence. However, the integration of regular intravenous infusions into their lives—often occurring over 12-14 hours overnight, up to seven days a week—poses unique challenges and burdens that potentially impair their quality of life (QoL). Recognizing the need to assess and improve the QoL for these patients, a comprehensive study led by Burden et al. investigated the various factors influencing it.
DOI: 10.1016/j.clnu.2018.06.964
Reference: Burden, S. T., Jones, D. J., Gittins, M., Ablett, J., Taylor, M., Mountford, C., … Lal, S. (2019). Needs-based quality of life in adults dependent on home parenteral nutrition. Clinical Nutrition, 38(3), 1433-1438.
Methodology
This cross-sectional study involved 466 patients reliant on HPN. The Parenteral Nutrition Impact Questionnaire (PNIQ), a validated tool for assessing the impact of HPN on QoL, was distributed across nine UK HPN centers. The scores from the PNIQ were evaluated alongside variables such as the disease causing intestinal failure, the frequency of HPN infusions per week, and other patient demographics. The higher the PNIQ score, the poorer the perceived quality of life.
Results
The mean PNIQ score amongst participants was 11.04 (SD 5.79). Crucial findings indicate that individuals requiring more frequent HPN infusions each week experienced a significantly lower QoL (effect size 0.52, 95% CI 0.184 to 0.853). No significant difference was observed in QoL between patients with cancer compared to those with inflammatory bowel disease. However, those suffering from surgical complications related to their illness reported a notably poorer QoL (effect size 3.03, 95% CI 0.642 to 5.418), while patients with severe gastro-intestinal dysmotility experienced a better QoL than their counterparts with other conditions (effect size -3.03, 95% CI -5.593 to -0.468).
Beyond the core results, the study serves to illustrate the complex interplay between disease state, treatment regimen, and patient perception of their own QoL when dependent on lifesaving interventions such as HPN.
Discussion
The findings from this multicenter study underscore a fundamental concern in the treatment of chronic intestinal failure: the need to manage not only the physiological demands of the condition but also the psychosocial implications for the patient. As the study indicates, the frequency of HPN is inversely related to needs-based QoL, highlighting that treatments that could potentially reduce the burden of HPN are desirable.
For healthcare providers, this means embracing a more holistic approach to patient care, where the frequency and intensity of treatment regimens are carefully balanced against their impact on the patient’s daily life. The development of interventions that can lessen the dependence on HPN, whether through surgical advancements, novel pharmaceuticals, or nutritional strategies, can serve to greatly enhance the well-being of these patients.
The research published by Burden et al. also alludes to the importance of personalized treatment plans and highlights the variability in how different disease states affect QoL for patients on HPN. As healthcare continues to move towards more individualized strategies, understanding these nuances will become increasingly significant.
Conclusion
The extensive cohort study conducted by Burden et al. presents a clear picture of the relationship between the burden of home parenteral nutrition and quality of life in patients with chronic intestinal failure. The study reinforces the notion that minimizing the frequency of HPN infusions is likely to enhance QoL, underscoring the ongoing need for innovative treatments that address this aspect.
Crucially, this work opens the door for additional research focused on mitigating the QoL impacts for those dependent on HPN and provides a strong foundation for policy-makers and healthcare providers aiming to optimize care for this patient population.
References
1. Burden, S. T., et al. (2019). Needs-based quality of life in adults dependent on home parenteral nutrition. Clinical Nutrition, 38(3), 1433-1438. doi:10.1016/j.clnu.2018.06.964
2. Pironi, L., et al. (2016). Home parenteral nutrition. Current Opinion in Clinical Nutrition & Metabolic Care, 19(4), 295–304. doi:10.1097/MCO.0000000000000287
3. Winkler, M. F., et al. (2010). The effect of disease, functional status, and relapse on the utility of quality of life in ambulatory individuals on home parenteral nutrition. JPEN J Parenter Enteral Nutr, 34(4), 368–381. doi:10.1177/0148607110364842
4. Culkin, A., et al. (2017). A review of the quality of life of adult patients treated with long-term parenteral nutrition. Frontline Gastroenterol, 8(3), 195-202. doi:10.1136/flgastro-2016-100767
5. Baxter, J. P., et al. (2019). The burden of home parenteral nutrition as perceived by patients and their caregivers: Results from a survey-based study. Nutrition in Clinical Practice, 34(6), 890-899. doi:10.1002/ncp.10241
Keywords
1. Home Parenteral Nutrition
2. Quality of Life Chronic Intestinal Failure
3. Parenteral Nutrition Impact Questionnaire (PNIQ)
4. Intestinal Failure Treatment
5. HPN infusion frequency impact
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