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Research: Quality of Life Study
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Be Counted in Major Quality of Life Study

Darlene Kelly, MD, PhD, FACP

At the annual Oley Conference in San Diego, Dr. Darlene Kelly announced Oley’s participation in a large international study on home parenteral nutrition (HPN) and quality of life. Read on to see how you, if you are an adult HPN consumer, can be part of this valuable and exciting research.

“Quality of life” has become a buzz term in the medical literature. Many people think they know what it is or why it is significant, but there really is no official, widely accepted definition. According to a World Health Organization description from the1940s, quality of life (QoL) is “a state of complete physical, mental and social well-being, and not merely the absence of disease.”


Many individuals indicate that people in the Western world have an intuitive understanding of what an individual’s QoL is. However, the only person who can really understand a given person’s QoL is that person.


One of my colleagues, who is a world’s expert on inflammatory bowel disease, judged a young woman’s QoL as being terrible because she was on home parenteral nutrition (HPN). He overlooked the fact that her Crohn’s disease was a major complicating factor and that she often developed dehydration because of disabling diarrhea. The diarrhea also interrupted her ability to leave her home. When I talked to the woman about her life, she judged the inability to go on outings with her family (because of the need to find “facilities”) and the inability to enjoy a meal with them as the issues that made life most difficult.


Measuring QoL

How can we determine how a specific disease or treatment alters an individual’s QoL? Different questionnaires have been developed over the years as tools to measure QoL. These include generalized questionnaires that have met the test of time and have been applied to a variety of different disease states.


The SF 36 (a 36-itemshort-form health survey) is an example of a general questionnaire that has been extensively tested and accepted as a tool to compare individuals with a disease to those without disease. There are also specialized tools (questionnaires) that apply to individuals with certain diseases and treatments, such as cancer and treatments applied to cancers.


QoL and HPN

In the past, there have been some important QoL studies of HPNers. But each of these studies has been a relatively small study that may be biased and may not reflect the experience of consumers in general. Many of these small studies have been done with consumers who were identified through a specific infusion company or with handpicked individuals (sometimes through Oley). These studies have measured QoL in a variety of ways.


Until recently, there were no life assessment tools designed specifically for widespread use with individuals receiving HPN. However, Janet Baxter, a Scottish dietitian who is working on her doctorate, has been developing such a questionnaire, and it is now ready for use. Baxter has been working in conjunction with her advisor, Peter Fayers, who is a world expert on QoL and who (literally) wrote the book on QoL (Quality of Life: The Assessment, Analysis and Interpretation of Patient-Reported Outcomes, one of the major textbooks on QoL).


Baxter’s tool has been tested extensively for validity over the last few years. The tool has been validated in several European languages and countries, and to some extent in America through Oley. It is now “ready for prime time,” and Oley is privileged to be able to cooperate with the Home Artificial Nutrition workgroup of the European Society for Parenteral and Enteral Nutrition (ESPEN) in participating in this very large international study.


Some issues of concern to American HPN consumers do differ somewhat from the issues of concern to European consumers. For example, in European countries the governments pay the cost of HPN. Therefore Oley board members have developed an additional brief questionnaire that will be distributed with the Scottish tool and will consider some of the financial issues that affect consumers in the United States.



Why do we (the Oley Foundation) have an interest in these QoL measurements? There are several benefits to understanding what factors most affect consumers. While the physicians, nurses, pharmacists, and dietitians who work with you may think they understand what issues affect you, only you, the consumer, can communicate what issues the health professionals may be overlooking, and what is truly most important to you as the consumer. Developing this understanding further could result in Oley being of greater benefit to you.


Further, as intestinal transplantation becomes more widespread and has better outcomes, comparisons of QoL between transplantation and HPN may become more important to transplant centers, insurance companies, and consumers. Lastly, comparisons between the practice in North America and Europe and QoL in both may help clinicians do amore effective job of improving QoL by learning more effective practices. For example, sealed, partitioned TPN bags that are manufactured commercially and do not require refrigeration are commonly used in some European countries, especially when consumers travel.

You may wonder if the questionnaire can help your doctor gain any understanding of what affects you and your QoL specifically. If you wish your physician or homecare company to review or even copy your questionnaire, you are certainly free to share your questionnaire with them. If Oley does further questionnaires in the future, a comparison may be useful in identifying new or changing issues in your care.


How to Participate

If you are an adult HPN consumer, we encourage your participation! You may participate by contacting the Oley office at (800) 776-OLEY. You will be sent three questionnaires (the general SF 36, the Scottish tool, and the Oley supplemental questionnaire), a medical information form, and a stamped envelope to use for returning the questionnaires.


We ask that consumers fill the questionnaires out personally. It is your responses that are important to us, not those of your caregiver, spouse, parent, or child. You do not have to complete the questionnaires at one sitting, but we suggest that you answer the questionnaires within two days if possible.

Do you have to be an Oley member to participate in this? Absolutely not! We would really like to have everyone who is on long-term PN included in the study. Some of the home infusion companies will have a link to the Oley Web site that will allow their consumers to participate. Word of mouth, between consumers and consumers to homecare companies, will help extend the study a great deal (hint). All questionnaires should be returned directly to Oley.


Tools are not available at this time for pediatric consumers of HPN. Such a tool may be developed in the near future for children and youth, also as a result of working with the Europeans. Stay tuned for this development.



How do you know that the information reported on the QoL questionnaires will remain confidential? Oley will not be identifying individual’s questionnaires. Once a questionnaire is received at Oley it will be assigned a number. The list associating an individual with a number will only be seen by one designated person (the Oley administrative assistant). The names will be separated from the questionnaires and put into a locked box in order to keep the questionnaires anonymous.


The only time the list would be retrieved would be if follow-up questionnaires were done. In that case, the administrative assistant would assign the identifying number linked to the initial set to the repeat questionnaire from an individual, so that comparisons over time can be made. Once again, only the administrative assistant will have knowledge of who the consumer is.


HEN and QoL

What about Oley members who are enteral (HEN) consumers? Oley is interested in you as well, but we have not been able to acquire a similar QoL tool specifically developed for HEN consumers. At the Oley annual conference, I encouraged enteral consumers and clinicians to form a group to start developing such a tool. This is a time-consuming and rather daunting project. Certainly individuals who take on such a project could benefit from the model presented by the HPN QoL tool. The research committee can act as advisor to a subgroup identified to develop an HEN tool. Please contact the Oley office if this is something you are interested in.

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6/28/2017 » 7/1/2017
Oley exhibit at Congress of the Intestinal Rehabilitation and Transplant Association, New York, NY

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.


Updated in 2015 with a generous grant from Shire, Inc. 


This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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