Onderzoeksgroep
DATAVERZAMELING,
INSTRUMENTATIE EN RESEARCHDESIGN
Thema
Meten van gezondheid:
voetangels en klemmen bij de kwaliteit van dataverzameling en instrumentatie
Georganiseerd door
Stasja Draisma
Hilde Tobi
Dataverzameling in gezondheidsonderzoek staat
voor een keur aan uitdagingen: representativiteitsproblemen en kwaliteit van
gebruikte vragenlijsten zijn enkele zaken die veel onderzoekers bezighouden. Intussen
neemt het aantal publicaties over de
ontwikkeling en validering van nieuwe
gezondheidsmeetinstrumenten enorm toe.
In deze sessie staan methodische aspecten van
dataverzameling binnen gezondheidsonderzoek centraal: het opsporen van
problemen en voorstellen tot verbetering.
Enkele vragen die aan de orde komen in deze
sessie zijn: Hoe kunnen respondenten het beste geworven worden en welke
respondentgroepen zijn ‘resistent’ voor het meedoen aan gezondheidsonderzoek?
Wat kan de studie van antwoordgedrag van specifieke groepen respondenten
bijdragen aan het signaleren en verhelpen van problemen in
gezondheidsvragenlijsten? Kan je met behulp van landmarks het geheugen van
respondenten zo stimuleren dat zij vragen beter kunnen beantwoorden? Wat
betekent een participatieve benadering van gezondheidsonderzoek door middel van
actieonderzoek voor de dataverzameling?
Methodological challenges in quality
of life research among Turkish and Moroccan ethnic minority cancer patients:
Translation, recruitment and ethical issues.
Rianne Hoopman
EMGO Institute
VU University Medical Center Amsterdam
& Caroline B. Terwee, Martin J. Muller, Ferko Öry, Neil K.
Aaronson
The large population of first generation Turkish and Moroccan
immigrants who moved to Western Europe in the 1960’s and 1970’s is now reaching
an age at which the incidence of chronic diseases, including cancer, rises
sharply. To date, little attention has been paid to the health-related quality
of life (HRQOL) of these ethnic minority groups, primarily due to the paucity
of well translated and validated measures, but also because of a range of
methodological and logistical barriers. The primary objective of the
presentation is to describe the methodological challenges in conducting HRQOL
research among these patient populations, based on experience gained in a
project in which four widely used HRQOL questionnaires were translated into
Turkish, Moroccan-Arabic and Tarifit, and administered to a sample of 90
Turkish and 79 Moroccan cancer patients in the Netherlands. Problems
encountered in translating and administering the questionnaires included
achieving semantic equivalence (use of loanwords), use of numerical rating
scales, lengthy questions and response scales, and culturally sensitive and/or
inappropriate questions. Efficient identification of eligible patients is
hampered by privacy laws that prohibit hospitals from registering the ethnicity
of patients. Recruiting patients to studies is often difficult due to low
literacy levels, lack of familiarity with and distrust of research, concerns
about immigration status, and inaccurate or missing contact information. This
can lead to lower response rates than is the case with the population of Dutch
cancer patients. Additional ethical issues that arise in such studies arise
from patients’ problems with communicating with their health care providers,
their lack of understanding of their diagnosis, treatment and prognosis, and
the potential role conflict experienced by bilingual research assistants who
may wish or be asked to intervene on the patients’ behalf. Practical approaches
to resolving these issues are presented.
A comparison of the use of landmark events as memory aids by Dutch
and American survey respondents
Tina Glasner
Landbouw Hogeschool Wageningen
& W. van der Vaart, & R.F. Belli
In this study, we compared the use of landmark events by Dutch and
American respondents in three studies in which calendar instruments were used.
The study explores differences in the number and types of landmarks reported,
in the relationship with socio-demographic factors and in the distribution of
landmarks over time. Taking into account the differences in the design of the
studies, we aim to provide insights into whether and how using landmark events
may be influenced by cross-cultural variability. Cultural differences between
countries in the retrieval and use of landmark events might have implications
for the design of calendar procedures in different countries. In a comparative
study this would raise the issue of the possibility of standardization of such
data collection procedures across countries.
Participatieve methoden: de ervaringen
met actie onderzoek in wijkgericht gezondheidswerk.
Annemarie Wagemakers
Landbouw Hogeschool Wageningen
Participatie van de doelgroep is een belangrijk middel en
een belangrijk doel om meer gezondheid te bewerkstelligen. Dit geldt zowel voor
de interventie als voor het onderzoek. Actie onderzoek maakt participatie in
onderzoek mogelijk. In actieonderzoek werkt de onderzoeker nauw samen met de
participanten in het programma, dus ook met de ‘onderzochten’. Actie onderzoek
kenmerkt zich door twee functies: 1) een evaluatiefunctie en een actiefunctie. De
onderzoeksresultaten worden voortdurend teruggekoppeld naar de praktijk opdat
op basis daarvan beslissingen kunnen worden genomen over ‘hoe nu verder’.
Het project ‘Wijkgezondheidwerk’ in Eindhoven is vanaf
1999 begeleid met actie onderzoek. In het actie onderzoek zijn verschillende
methoden en instrumenten ingezet en verder ontwikkeld. In de presentatie worden
een aantal methoden en instrumenten toegelicht:
De methoden en meetinstrumenten kunnen afhankelijk van de
fase van een programma ingezet worden en aangepast worden aan de specifieke
context. De toepassing van de methoden leert dat, naast het instrument zelf, de
route van introductie en het nagesprek bepalend zijn voor de impact van de
uitkomsten. Door de meetinstrumenten in combinatie met andere methoden en
instrumenten te gebruiken is cross-checking van de resultaten mogelijk.
Listen to their answers! Response behaviour in the measurement of
physical and role functioning
Marjan Westerman
Department of Public and Occupational Health, EMGO Institute, VU
University Medical Centre, Amsterdam, The Netherlands,
& Hak T, Sprangers MA, Groen HJ, van der
Wal G, The AM.
Quality of life (QoL) is considered to be an indispensable outcome
measure of curative and palliative treatment. However, QoL research often
yields findings that raise questions about what QoL measurement instruments
actually assess and how the scores should be interpreted. We investigated how
patients interpret and respond to questions on the EORTC-QLQ-C30 over time and
found explanations to account for counterintuitive findings in QoL measurement.
We used qualitative investigation of the response behaviour of small-cell lung
cancer patients (n = 23) in the measurement of QoL with the European
Organization for Research and Treatment of Cancer Core Quality of Life
Questionnaire (EORTC QLQ-C30). Focus was on physical functioning (PF, items 1
to 5), role functioning (RF, items 6 and 7), global health and QoL rating
(GH/QOL, items 29 and 30). Interviews were held at four points: at the start of
the chemotherapy, 4 weeks later, at the end, and 6 weeks after the end of
chemotherapy. Patients were asked to 'think aloud' when filling in the
questionnaire.
Patients used various response strategies when answering questions
about problems and limitations in functioning, which impacted the accuracy of
the scale. Patients had scores suggesting they were less limited than they
actually were by taking the wording of questions literally, by guessing their
functioning in activities that they did not perform, and by ignoring or
excluding certain activities that they could not perform. CONCLUSION:
Terminally ill patients evaluate their functioning in terms of what they
perceive to be normal under the circumstances. Their answers can be interpreted
in terms of change in the appraisal process (Rapkin and Schwartz 2004; Health and
Quality of Life Outcomes, 2, 14). More care should be taken in assessing the
quality of a set of questions about physical and role functioning.
Motives for (not) participating in a lifestyle intervention trial.
Jeroen Lakerveld
VU Medisch Centrum
& Ijzelenber W, van Tulder MW, Hellemans
IM, Rauwerda JA, van Rossum AC, Seidell JC.
Non-participants can have a considerable influence on the external
validity of a study. Therefore, we assessed the socio-demographic,
health-related, and lifestyle behavioral differences between participants and
non-participants in a comprehensive CVD lifestyle intervention trial, and
explored the motives and barriers underlying the decision to participate or not.
We collected data on participants (n=50) and non-participants (n=50) who were
eligible for inclusion in a comprehensive CVD lifestyle interventional trial.
Questionnaires and a hospital patient records database were used to assess
socio-demographic, health-related and lifestyle behavioral variables.
Univariate and multivariate logistic regression was used to describe the
relationship between explanatory variables and study participation.
Furthermore, motives and barriers that underlie study participation were
investigated by means of questionnaires.
Participants were younger, single, had a higher level of education
and were employed. No statistically significant differences were found in
health measures and behavioral variables. The motives for participation that
were most frequently reported were: the perception of being unhealthy and
willingness to change their lifestyle. The main barriers reported by
non-participants were financial arguments and time investment.
The differences between participants and non-participants in a
lifestyle intervention trial are in mainly demographic factors. The
participants consent in order to alter their lifestyle, and/ or because they
want to improve their health. To minimize non-participation, it is recommended
that access to a lifestyle intervention program should be easy and cause no
financial restraints.