Quality of Life in the Management of Home Parenteral Nutrition

Abstract

Introduction: Home parenteral nutrition (HPN) is a rare but challenging therapy and care for patients with mostly severe underlying diseases. We aimed to investigate patient-reported health-related quality of life (QOL) of patients receiving HPN and its development over time in particular. Methods: We assessed QOL of HPN patients in a prospective multicenter observational study (SWISSHPN II study). We designed a questionnaire to record symptoms and negative impacts of HPN and completed the validated Optum® SF-36v2® Health Survey with the patients. Results: 70 patients (50% women) on HPN were included. PN commonly affected feelings of dependency (n = 49, 70%), traveling/leaving home (n = 37, 53%), attending cultural and social events (n = 25, 36%), and sleep (n = 22, 31%). Most frequently reported symptoms were diarrhea (n = 30, 43%), polyuria (n = 28, 40%), nausea/emesis (n = 27, 39%), dysgeusia (n = 23, 33%), and cramps (n = 20, 29%). At baseline, mean (SD) SF-36v2® physical and mental health component summary scores (PCS and MCS) were 45 (20) and 57 (19), respectively, and there was a trend towards improvement in PCS over the study period while MCS remained stable. Satisfaction with health care professionals involved in HPN care was high. Conclusion: QOL is a crucial and decisive aspect of HPN patient care. Symptoms related to the underlying disease and PN are frequent. Impaired social life and an ambivalent attitude towards the life-saving therapy are major concerns for these patients and should be addressed in their care.

Effects of parenteral nutrition vs. best supportive nutritional care on quality of life in patients with pancreatic cancer – A secondary analysis of PANUSCO

“…questionnaire. The study showed that there was an improvement in physical health component summary scores (comparable with domain physical functioning QLQ-C30) when patients got PN [37]. Reasons for this difference could be that this study differs in intervention length, patient group (cancer and non-cancer patients, no palliative therapy) as well as the survey instrument.…”

“…However, it remains understudied whether PN, while effectively increasing nutritional intake, has a negative impact on QoL in PaCa patients. A prospective observational study in participants with mixed conditions on the impact of PN on QoL showed a trend towards an improvement in the physical health component after three months, while the psychological component remained stable [37]. A systematic review of non-cancer patients criticized the lack of su cient literature on the impact of PN on QoL [38].…”

When all else fails: the colo-duodenal anastomosis

“…Reduced QOL for patients correlates to fatigue, reduced oral intake, and the social burden of the time intensive treatment [ 12 ]. Since TPN relies heavily on the personal responsibility of the patient to administer and maintain sterility, it is of vital importance to recognize and address the social implications of the treatment [ 13 ].…”

Healthy Sleep Practices for Consumers of Home Total Parenteral Nutrition: A Mixed-Methods Community-Based Participatory Study

“…Overnight infusions of HPN are widely recognized by patients and their clinicians to disrupt sleep [ 21 , 22 ]. Patients attribute sleep disruption to nocturnal polyuria, infusion pumps, intravenous lines, and ostomy output [ 23 ].…”