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Abstract:

A prospective evaluation of health status and quality of life on 17 patients with non-malignant diagnoses receiving long-term home parenteral and enteral nutrition was compared with age and gender matched control data from the general population in the United States. Results suggested that while the quality of life scores were lower in all categories than the control group, there was no significant decline in scores between two time periods three years apart. The most commonly affected categories compared to the control group were sleep, travel, and social activities. Health status remained stable between the two time periods surveyed. 

home care, parenteral nutrition, enteral nutrition, quality of life, health outcomes, Medical Outcomes Short Form (SF)-36, prospective

Discussion:

Very little information is available on long-term health and quality of life impact of home enteral and parenteral nutrition, especially from the patient's point of view. This study was performed to provide information on the ability of patients to maintain their quality of life and health stability over a longer period of time. 

Methods:

A Medical Outcomes Short Form (SF-36) survey (see background section) and a self-assessment of patient lifestyle with HPEN survey were completed by patients who met the study criteria of receiving home parenteral or enteral nutrition (HPEN) support with a non-malignant diagnosis for more than one year. Seventeen patients participated including 7 men and 10 women. Home parenteral nutrition (HPN) was received by 12 participants and home enteral nutrition (HEN) was received by 5 participants. These surveys were completed for two time periods, three years apart. A third evaluation of outcomes without additional surveys was completed three years following the second survey to determine clinical outcome and the continued need for HPEN. Scores of the participants were compared to matched controls.  

In order to provide a means of greater understanding, the following explanation of the survey form used for assessment in this study is given. Background information on the SF-36 survey is a follows: The Medical Outcomes Short Form questionnaire (SF-36) is a validated measure of general health status in nine domains of patient function:

1.      Physical function (10 items)

2.      Limitations because of physical health problems (4 items)

3.      Body pain (2 items)

4.      General personal health (5 items)

5.      Vitality and energy level (4 items)

6.      Social function  (2 items)

7.      Limitations because of emotional problems (3 items)

8.      Mental health (5 items)

9.   Reported health transition (1 item)

These domains are scored from high to low on a scale of 5 to 1 by the patient based on their experiences and perception of their level of and ability to maintain physical, mental, and social function. Adding scores together from those categories can then summarize physical function and mental function.

Background of Assessment of the Effect of HPEN on Patient Lifestyle: This survey included items on clinical symptoms and the impact on activities and lifestyle that have been identified as common in patients receiving HPEN. An additional comment portion was provided to allow the patient to provide information on other aspects of their lives they believed to be affected by HPEN.

Results:

The mean duration of HPEN at baseline was 7.1 years (1-18 years) in 12 patients receiving HPN and 5 patients receiving HEN.  Mean age was between 50-55 years old (23-73 years old). Diagnoses included short bowel syndrome (13), Behcet’s syndrome (1), radiation enteritis (1), and dysmotility (2). Most patients received their nutrition support daily, which remained mostly unchanged for the duration of the study. In addition to their nutrition support, patients reported food intake. None were admitted to the hospital for HPEN-related complications during the survey period of three years.

Work function remained stable beyond the survey period with four reporting inability to work on the first survey and five reporting inability to work on the second survey. Three years after the survey period, two patients had discontinued therapy and were maintained on oral nutrition and one patient transitioned from parenteral to enteral therapy. In this post-study follow-up two of the most elderly patients had died from underlying disease. 

Health status was similar between the HPN and HEN patients at both survey periods and no significant differences were seen between survey periods. While patients remained stable, their physical functioning scores were lower than matched controls citing their impaired health status and lack of energy. Physical health scores were unexpectedly higher among older patients compared to younger patients. Mental scores were close to matched controls.

HPEN-affected changes cited by participants were mostly related to sleep, travel difficulty, and limitations or changes in social activities. There were no differences between these scores between the first and second survey periods. Clinical symptoms that patients attributed to their HPEN were mostly related to fluid balance and frequent urination during infusion. 

Summary of Study 1