How Do We Measure Quality of Life?

by Laurie Hammond

When your mother has the flu, do you ask for the status of her white blood cell count? Or are you heartened to hear she had a good night’s sleep and feels more energetic than she felt yesterday? As Robert Hoop suggested with this example, we intrinsically understand the importance of a patient’s quality of life (QOL). Robert is a statistician who has worked in biomedical research for 21 years writing QOL protocols, research reports, and manuscripts; designing studies; chairing sessions at national conventions; and analyzing the psychometric properties of QOL instruments. In his presentation at the April 27^th meeting of the Northern California AMWA Chapter, he clarified the importance of evaluating QOL, provided some criteria for effective measurement tools, and discussed key issues for those of us who must analyze and explain QOL findings.

The importance of evaluating QOL is evident in the information it reveals about the effects of disease, as well as the results of therapy. If we know, for example, that individuals with rheumatoid arthritis (RA) have a reduced quality of life compared with the general population, clinicians can target RA therapy to improve that measure. And, while we might expect effective therapy to improve a patient’s quality of life, that is not always the case. Especially for patients undergoing cancer treatment, therapy may decrease a patient’s QOL. Considering this variable can shift a clinician’s perspective on appropriate treatment. In fact, it was the FDA’s Oncology Advisory Panel that originally recommended including quality of life as an efficacy variable in clinical trials.

Four distinct areas, or domains, of a patient’s life may be measured in QOL instruments:

1.      Physical and occupational (e.g., “How much does your health now limit you in lifting or carrying groceries?”)

2.      Psychological (e.g., “During the past seven days, how often have you felt downhearted?”)

3.      Social interaction (e.g., “In the past month, have you felt distant from your friends?”)

4.      Somatic sensation (e.g., “To what degree have you felt pain in the past week?”)

While many different validated QOL instruments exist, there are two broad categories of questionnaires: generic and disease-specific. Generic questionnaires apply to patients with any type of disease, as well as to the general population. Questions are broad, such as, “Has your health limited your social activities?” These instruments are helpful in measuring how a patient’s quality of life compares with the general population or with other patients in the group being evaluated. Disease-specific instruments apply to a singular condition and are helpful in measuring intra-patient changes over time. A typical question on a survey for patients with RA might be, “Can you easily open a new jar of food?” The response to this question before treatment compared with the response after treatment can contribute important information on the efficacy of therapy.

Robert presented several issues to consider in reporting the results of QOL instruments. Key among these is where to include QOL findings in a clinical study report. While QOL is a unique category, it has yet to be given a unique position in clinical reports and is best described as an efficacy variable. Thus, Robert recommended QOL results be included with efficacy findings. It also is important to avoid describing results as “clinically significant.” Because QOL is meaningful to the patient, rather than the clinician, instruments would more appropriately show “meaningful change.” In addition to presenting QOL findings, writers should cite references for the reliability and validity of the instrument, e.g., “Validity was established by Smith in 1999.”

Given more time, Robert could have provided many additional tips and suggestions. If you are interested in learning more about QOL research, you can sign up for his workshop at the national conference in Miami this coming September. He also is available to respond to specific questions via e-mail (roberthoop@attbi.com) or phone (408-733-7026).

Laurie Hammond is a member of the Northern California Chapter of AMWA and a freelance medical writer specializing in medical education.

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Upcoming Events

"Asilomar" 2004 update

It is the Northern California Chapter's turn to sponsor the West Coast Regional AMWA conference (aka Asilomar) in 2004. The 2004 Conference Board is in negotiations with the Berkeley Marina Radisson, a new venue which will allow more members to attend and help ease transportation arrangements for speakers and attendees. The Conference Board (Susan Eastwood and Sharon Tellyer, co-chairs) is hard at work arranging speakers, workshops, and seminars for your education and entertainment. Additional information will be distributed as it becomes available, so stay tuned!

Symposium on electronic publishing, Washington, DC

The Symposium on Electronic Scientific, Technical, and Medical Journal Publishing and its Implications will be held May 19-20, 2003, at the National Academy of Sciences Auditorium in Washington, DC. This symposium, sponsored by the Committee on Scientific, Engineering, and Public Policy  in collaboration with the Board on Life Sciences and the Computer Science and Telecommunications Board, will bring together experts in science, technical, and medical publishing to identify the recent technical changes in publishing and other factors that influence the decisions of journal publishers to produce journals electronically. The meeting will be free and open to the public (with advance registration) and will also be available as live audio webcast. For more information see http://www7.nationalacademies.org/cosepup/E-Publishing.html

Please also contact Naomi (ruffdraft@earthlink.net) with any contributions you might have for the next newsletter—upcoming events, summaries of meetings you’ve been to recently, information about your new job, new book, yourself if you’re a new member… Otherwise she’ll be reduced to making all this stuff up.

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Member News

We love to hear news from our members! Email our chapter Secretary if you are a new AMWA member (<1 year membership) and want to introduce yourself to the chapter members, have just published a book, won an award, changed jobs, or have other news you'd like distributed on the newsletter and posted to this site. New members (less than 1 year of membership) are encouraged to send a brief introduction to Naomi Ruff for inclusion in future newsletters.

We would like to welcome our recent new members:

Barbara Boughton

I've been a health and science writer for the last 18 years. I started out in newspapers, writing features and consumer health stories and then started freelancing 10 years ago. I gradually branched out from consumer health stories to doing work for physician newspapers and magazines and the news section of journals such as the Lancet Oncology. I frequently cover medical meetings for my clients, and I have also just started to do CME. I'm interested in doing more of that, and getting experience in more technical sorts of writing. I'm an English literature major not a scientist, so I'm always looking for ways to brush up my science skills. I'm hoping the AMWA can help with that.

• Toniann Derion, PhD

• Nancy R. Katz, PhD

• Georgina Kurtovich

• Steven J. Peterson

As an ongoing feature, we would like to acknowledge those who have been long-time members of AMWA. We will therefore announce (with the member¹s permission) when each member achieves a 5-year increment of membership.
The following are members who have achieved 5-year membership milestones during the first 4 months of 2003:

Milestone/Member

Continuous Member Since

Marjorie K. Little

Toni Rizzo

Shannon Moffat

February 1993

April 1993

April 1993

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International Association of Business Communicators mixer

by Judith Broadhurst

Brenda Price, manager of Communications & Public Affairs at Roche Palo Alto (paloalto.roche.com), was one of three panelists at a Page 6 February meeting on “How Companies Hire Consultants,” sponsored by the Independents Roundtable subgroup of the Silicon Valley Chapter of the International Association of Business Communicators (IABC). Price explained that she has relied primarily on IABC to find freelance writers. She had not known about AMWA’s Northern California Chapter, but because of the mixer, I was able to tell her about the chapter and AMWA’s freelance directory.

Price says that Roche Palo Alto uses freelance graphic and Web designers more often than freelance writers. Typically, they need outside writers as seldom as twice a year. She usually calls a writer who has worked for her before, but occasionally solicits competitive proposals for certain projects. The requests for proposals (RFPs) she issues state the scope of the project, the audience, timelines, and information about Roche. What she looks for in proposals includes:

• How you would approach the project, in more than just general terms. “Flesh it out,” she says.

• How you characterize the project. For instance, what’s your understanding of the scope and nature of the project? What else can you add or what other ideas can you contribute?

• What you need from Roche in terms of information and any equipment or other assistance.

• Your restrictions, such as the number of revisions and meetings your bid includes, where you’ll work, what you’ll provide, and what you expect them to provide.

In addition to the information you provide, Price looks for contractors whose proposals show that they are good writers, creative, able to solve problems, highly organized, and flexible. You’re more likely to get serious consideration if you know the drug discovery process and have a scientific background. The best way to introduce yourself to Price is by mail:

Brenda Price, Manager

Communications & Public Affairs

Roche Palo Alto

3431 Hillview Ave., MS A2-110

Palo Alto, CA 94304

Other meeting coverage

Editor's Guild meeting on fact checking
The Editor's Guild, a group of San Francisco Bay Area professional copy editors, editors, and writers organized for the purposes of networking and information sharing, held an interesting meeting on March 3 on the topic of fact checking. You can read a summary of the meeting and access other information on the topic by joining the Editors Guild Yahoo! discussion group at http://groups.yahoo.com/group/editorsguild/

The summary is included in message number 876, posted on March 13, 2003. Neither the Editors Guild nor Yahoo! charges for membership. The Editor's Guild holds meetings monthly at the Rockridge Branch of the Oakland Library.

If you have a job opportunity that you would like to make distribute to members of the Northern California AMWA chapter on the jobs distribution list, please contact Jennifer Porro at jporro@ix.netcom.com.

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