We may all agree that quality of life (QOL) is a key outcome of healthcare and policy, but we probably don’t all agree on exactly what QOL is. Indeed, the term can mean different things to different people at different times. Some people think this makes the scientific study of QOL quite impossible, while others enjoy the conceptual complexity and methodologic challenges that ensues. People of the latter inclination congregate annually at the scientific conference of the International Society for Quality of Life Research (ISOQOL). If you want to find out about the latest debates and developments in this field, this is a good place to start. It offers an interesting and informative mix of conceptual, methodologic and practical sessions, and a place to hear and meet both the guiding lights and the rising stars of health-related quality of life (HRQOL) research.
ISOQOL’s 11th Annual Scientific Meeting was held in Hong Kong in October 2004. The Lion Dance in the opening ceremony not only ensured an auspicious start (a local tradition), it also set the tone for the conference – energetic! Hong Kong is a really exciting place, and the conference seemed infused with its energy from start to finish. The Chinese have a strong tradition as gracious hosts and they have an irrepressible sense of humor; these two characteristics fostered a friendliness and warmth sometimes missing at a conference. Not only did the conference venue have state-of-the-art conference technology (what else would you expect in Hong Kong?), it also had a superb design and location; sunlight streamed through vast glass walls into tall open spaces where delegates mingled for coffee and tea, nibbling on exotic snacks, perusing posters, catching up with old friends and meeting new ones, glancing out to the luscious green hills rising to right and left of the Hong Kong Academy of Medicine Jockey Club Building.
With a diverse and engaging scientific program and over 400 participants, the conference was a great success. It ran very smoothly, thanks to the Hong Kong Hospital Authority which supported and coorganized this event. For many Asian participants, this was their first ISOQOL conference, and they seemed to enjoy it for all the reasons that ISOQOL regulars do – ISOQOL conferences are always stimulating and broadening experiences.
Conference theme
This year’s conference theme was ‘Harmonizing International HRQOL Research’. One definition of harmony is the combination or adaptation of parts, elements or related things, so as to form a consistent and orderly whole. With so many cultures and languages around the globe, with different ways of defining and conceptualizing HRQOL, with so many instruments and scales to measure HRQOL, and so many different uses and users of HRQOL measures, this theme provided a timely focus. In total, 25 international leaders in HRQOL research spoke on a series of topics at the keynote, plenary and symposia sessions. Where appropriate, sessions included speakers presenting eastern and western perspectives or experience, and each session (including the proffered paper sessions) had two chairs, one of whom was from Asia. With registrants from over 30 countries from all over the globe, this was a truly international conference.
The keynote speech was given by John Ware (CEO and Chief Science Officer, QualityMetric), who has long provided leadership in harmonizing international HRQOL research, with his efforts in crosscultural and crossinstrument calibration, and more recently in dynamic instruments bridging the gulf between individual patient management and population surveys. In his keynote speech, Ware advocated the standardization of HRQOL metrics across languages and cultures and to this end demonstrated the feasibility and practical implications of calibrating item banks for use in measuring HRQOL domains. He closed by suggesting a structural model of HRQOL that is appropriate for international research.
The plenary on the second day followed on from this by addressing the question, ‘What do we need to do to harmonize international HRQOL research and how will we do it?’ Speakers included China’s leading proponent of HRQOL, Ji-qian Fang (Department of Medical Statistics, School of Public Health, Sun Yat-Sen University, Guangzhou, China), leading Singapore clinician Julian Thumboo (Department of Rheumatology and Immunology, Singapore General Hospital and Associate Professor, Department of Medicine, National University of Singapore), Suzanne Skevington (Director of the World Health Organization [WHO] Centre for the Study of Quality of Life and deputy director of the ESRC Research Group on Well-being in Developing countries) and Barbara Gandek (Health Assessment Laboratory), who coordinates the International Quality Of Life Assessment (IQOLA) project in over 60 countries. Fang’s talk reflected his long experience as an analyst considering the sources of variability and commonality in crosscultural HRQOL data, while Thumboo’s talk presented the challenges faced by a clinician trying to use HRQOL data to improve the management of patients in routine clinical practice. The remaining two speakers presented the experiences of two of the biggest international HRQOL crosscultural measurement initiatives: WHOQOL (Skevington) and IQOLA (Gandek).
Item response theory & crosscultural issues
Item response gurus David Andrich (School of Education, Murdoch University, Australia) and Alan Tennant (Rehabilitation Studies, University of Leeds, UK), turned their considerable talents to the vexing issues of crosscultural comparison of health status in the third day’s plenary. Andrich’s presentation was very technical while Tennant’s was more conceptual, so these two speakers complemented each other well. Results from a recent collaboration in the WHOQOL endeavour served to illustrate various points. The pair, who have been collaborating in both research and teaching for some time, also gave an advanced level workshop on the Rasch Model.
For those wishing to learn more about crosscultural adaptation and translation, there was a choice of three workshops, giving attendees the opportunity to learn from the extensive experience of Cindy Lam (Hong Kong), Mona Martin (USA), Beng Li Ting (Singapore), Sonya Eremenco (USA), Ben Arnold (USA), Charles Cleeland (USA), Andrei Novik (Russia), Xin Wang (USA) and Tatyana Ionova (Russia).
Other topics
The topics of the six special symposia, and the respective invited speakers, included: the conceptualization of HRQOL, with Mick Power (UK) and Silke Schmidt (Germany); the use and value of HRQOL assessment in different countries and healthcare systems, with Donald Patrick (USA), Jan Sansoni (Australia), and Olivier Chassany (Europe); individualizing the measurement of patient-reported outcomes, with Ciaran O’Boyle (Ireland; Schedule for the Evaluation of Individual Quality of Life), Mark Haggard (UK) and Holger SchŸnemann (USA); and stress, depression and HRQOL, with Mick Power (UK), Zorianna Hyworon (Canada) and Mona Martin (USA). The recently released International Classification of Functioning got a good airing, with a symposium and a workshop lead by Alarcos Cieza. We also heard about the integration of western and traditional Chinese medicine (TCM) from Ka-Kit Hui (Director of the UCLA Center for East-West Medicine), while Ron Hays (UCLA) and Lai Shilong (Chinese Medicine Research and Service Centre) addressed HRQOL in TCM; this was a unique and fascinating symposium.
In addition to those mentioned above, there was a range of workshops, at both introductory and advanced levels, given by established luminaries such as George Torrance (Canada), David Feeny (Canada), John Ware (USA), David Osoba (Canada) and Diane Fairclough (USA), and rising stars such as John Brazier (UK), Jakob Bjorner (Denmark/USA) and Kathleen Wyrwich (USA). As always, there was a stimulating program of submitted papers and posters, advancing our understanding, challenging our beliefs and broadening our horizons.
Information resource
| • | For more information about ISOQOL www.isoqol.org (Accessed January 2005) | ||||