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Home parenteral nutrition may be safe for patients with systemic sclerosis
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Parenteral nutrition can be effectively and safely administered at home for patients with systemic sclerosis and severe gastrointestinal involvement, according to the results of a study.
Twenty-five patients with systemic sclerosis (SSc) who began home parenteral nutrition (HPN) and attended the intestinal failure unit at the Salford Royal National Health Service Trust between 1990 and 2012 were identified for a retrospective study.
Researchers collected demographic data, SSc and gastrointestinal characteristics and HPN details, including complications, management and survival. An 11-item self-report questionnaire was used to assess functional ability.
Limited cutaneous SSc was present in 19 patients and six had diffuse cutaneous SSc. Median disease duration, based on patient recollection of first symptoms excluding Raynaud’s syndrome, was 102 months prior to commencement of HPN. All patients had involvement of the small intestine; proven small intestinal bacterial overgrowth was identified in 20 patients and 11 patients had evidence of at least one pseudo-obstruction.
Eleven patients had a history of gastrointestinal surgery. Enteral feeding was attempted in 16 patients and nine patients began HPN directly.
At commencement of parenteral nutrition, all patients received a single lumen, tunneled central venous catheter (CVC).
Nine patients were trained to self-administer HPN, but three required assistance after a median of 9 months as disease worsened. Sixteen patients relied on nursing assistance. Five of the patients relied on family for assistance and one later transitioned to nursing care.
The median patient baseline BMI for 21 patients was 17.9 kg/m2. Initial and 12-month BMI were available for 13 patients, which increased from 18.5 kg/m2 to 21.3 kg/m2. The median baseline BMI for five patients who died in the first year was 17 kg/m2.
Two patients returned to oral feeding. One patient returned to oral feeding after 8 months and continued for over 8 years. The second patient returned to oral feeding after 29 months and continued for 7 years at the time of the study.
Five patients experienced seven episodes of blood stream infections related to catheter use at a rate of 0.19 per 1,000 CVC days. Of four patients who experienced a single infection, three self-administered HPN. Three infections occurred in one patient who was managed by nurses. Central venous thrombosis developed in four patients at a rate of 0.11 episodes per 1,000 CVC days. Nonthrombotic CVC occlusions occurred in 12 patients 26 times at a rate of 0.7 episodes per 1,000 CVC days. Six CVCs required repair or replacement for three patients, two of whom had HPN for more than 10 years.
Complications from SSc were attributable for the 17 deaths in the cohort, and no deaths were associated with HPN. Seven of the eight living patients at the end of the study remained on HPN after a median of 40 months. – by Shirley Pulawski
Disclosure: Harrison reports funding from the Raynaud's and Scleroderma Association.
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