Factors affecting the attrition of older people in longitudinal (health research) studies

Anthea Tinker and Gill Mein on behalf of the team: Anthea Tinker, Gill Mein, Suneeta Bhamra, Richard Ashcroft, Clive Seale (and the late Janet Askham) Presentation of the findings of the research to the NatCen conference 23.3.09

The project 
Funded by Atlantic Philanthropies  For 9 months from 1st March 2008
(extended until 30.12.08)  Investigators from multidisciplinary backgrounds (disciplines include social policy, sociology, philosophy, nursing, social sciences, biomedical ethics)

Rationale and research question
The research question was: ³What factors encourage older people to remain as participants, or discourages them from continuing to participate in health related longitudinal or panel studies?´

Aims The main aim of the research was to provide guidance to research teams planning or carrying out surveys about ways of increasing retention of older participants and reducing drop out rates .

We included studies from the UK.Some early issues  What is a longitudinal study?  How far back should the study go? We took current    and completed studies within 20 years What ages should be taken into account? We have taken 55+ We have included only those that cover both men and women The use of proxies ± some studies allow this and we have included studies where someone answered the questions on behalf of the respondent but not where the respondent was replaced by someone else. North America and Australasia  . Europe.

Methods 1 2 3 ‡ Literature review ‡ Questionnaires to other researchers ‡ Secondary analysis of existing data ‡ Quantitative and qualitative ‡ Collection of new data ‡ Focus groups and telephone interviews .

1. Literature Review  A review of existing qualitative and quantitative literature on the retention of older people in longitudinal studies that have met our criteria association with attrition  Factors where there is relatively clear evidence of the  Factors where there is no clear evidence about the relationship with attrition  Reasons for drop-out in these studies drop How other longitudinal studies have tried to reduce dropdropout and retain older participants .

Findings anticipated (45)  Few studies mention attrition in publications. 2005) However this study did not examine all the variables that we have and was limited to only 12 studies  We found a larger number of studies than .  A meta analysis of attrition based on 12 studies of people aged 65 and over showed attrition was associated with being older.Literature review . having poor functioning and cognitive impairment. living alone and not being married (Chatfield et al.

g. clubs The relationship of the following with attrition is unclear:  Gender  Marital status  Being in poor health  Home ownership .Literature review .Findings The following factors indicate that people are more likely to drop out of longitudinal studies if:  They are older  They are cognitively impaired  They are from a lower socio-economic status socio They have fewer years of education  They do not have children  They are not retired  They are less socially active e.

small gifts. letters from PI  Feedback . intrusive.home visits.contact is too frequent  Questionnaires . monetary  Practical issues .Literature review . dislike of blood samples and cognitive tests DropDrop-out can be reduced by:  Personal gestures ± b¶day cards.tiring. transport to medicals .difficult.on study progress and medical results  Emphasising importance of study ± media coverage  Incentives? .findings Main reasons for drop-out: drop Too time consuming . humiliating  Medical Exams .

 Researchers were asked about identifying attrition. identified from the literature review. and efforts to reduce attrition. 20 studies responded. measuring attrition.Questionnaires to researchers of other longitudinal studies  Questionnaires were sent to 38 studies which included both men and women together. .

annually. All were aware of attrition. partially active. between waves. and dead.  Participation was described differently in most studies and terms used were: full. withdrawn.  Attrition was measured in a variety of ways comparison with baseline.  Very few had collected reasons for dropout. partially withdrawn. active.findings  Studies differed. organisation based. Across country. locality based. Few had published details. temporary refusal. .Questionnaires to researchers on studies of older people .

results feedback. personal response to queries. study website  Incentives: fridge magnets. calendars  Contact: newsletters. meetings. Use close relatives/proxies . pens. Having local medical examinations.Methods used by other studies to reduce attrition  Information: newsletters. completing questionnaires online and a study website. birthday cards. reminder telephone calls  Efforts to reduce attrition: tracing lost participants. money. information meetings.

308 people (a response rate of 73%)  Participants self complete questionnaires (every two years) and medical examinations (every 5 years)  There have been other sub studies e. . when participants were aged between 35-55 years 35 The original group =10. vascular sub study etc.g. an MRI scan.2. Secondary analysis of existing data  The Whitehall II study (the Stress and Health Study) of civil servants recruited from 20 London based departments in 1985.

Secondary analysis of existing data ± Whitehall II Study The Whitehall II study was originally set up to investigate the social gradient in health. It has particularly looked at the relationship between stress. health and occupational grades PI is Professor Sir Michael Marmot at UCL. The Study uses newsletters to maintain contact and participation .

interviews etc have been approved by the UCL research ethics committee  The PI is a participant in the Whitehall II study. The process for contacting them.The Whitehall study: Ethical issues study have given consent to being followed up. she will not have access to the data of her fellow participants except in an anonymised manner (this has been declared to the relevant ethics committees)  All the active participants in the Whitehall II .

education level. accommodation type. gender.g.g. characteristics of respondents) The choice of variables was guided by the literature review and the variables available in the Whitehall II study data set We examined: age. employment grade. death) with those who have continued to fully participate . and longstanding illness (at baseline) A comparison of those who have stated they do not wish to take any further part in the study (excluding people who withdrew for other reasons e.Secondary analysis of existing quantitative data     Quantitative Analysis To see if we can determine what drop-out is related to dropand establish predictors of attrition (e. marital status.

Summary of statistical findings Using Logistic regression we found attrition in the Whitehall II study is associated with: Having a lower occupational grade Being older Being female Being unmarried at baseline Engaging in fewer social activities at phase 5 Renting house from council or privately .unfurnished (rather than owning house or renting privately -furnished)  Being less educated       .

Secondary analysis of existing data Qualitative Analysis An analysis of the Whitehall II data base of comments from the views of participants who have dropped out of the study and their reasons for doing so .

Qualitative Analysis of existing Whitehall II Data . GP  No longer interested in study  Retirement  Relocation or travelling .results For those who withdrew from the study and left comments. the most frequent reasons for dropping out were:  Too busy/study takes up too much time  Journey is too long/difficult  Chronic ill health  Being seen elsewhere e.g.

and views about. The collection of new data  Using the Whitehall II study participants. a small qualitative study to gather data about people¶s experiences of.  Data was collected through 3 focus groups and telephone interviews. .3. participating in longitudinal research.

Recruitment to focus groups  100 invitations given to participants     attending the medical examination 35 responded 5 refused 30 agreed to take part in focus group or telephone interviews 19 attended focus groups /or were interviewed on the telephone .

Focus groups .results The transcriptions from the focus groups were coded and themes were identified and were put into categories of:  Good and bad experiences of the study (medical and questionnaire)  Motivating factors for continuing in the study  Suggestions to make future participation easier .

Focus group results ± good things  Liked having a medical examination  Liked explanation of some of the tests  Impressed with the offer of home visits  Liked flexible appt system  Enjoyed meeting ex-colleagues ex Appreciates use of headphones for people who cannot hear .

did not like having to chose between boxes to answer Lack of information about study .Focus group results .bad things      The memory questions in the medical examination made participants feel ³stupid´ ³humiliated´ Lack of understanding of reasons for doing measures Really disliked the questionnaire Found the questions repetitive.

publicity. media ³Giving something back´ Enjoyed talking to friends/old colleagues after medical examination ± boosted confidence as all the same    .Focus group results ± Motivation for continuing with the study  The most important factor was having a medical examination Loved the prestige of being recognised as part of the study.

the average. hearing tests Complete questionnaire online Have an online resource to answer participants queries .g. eye checks. PSA.      More information about themselves. Public presentation from PI Increase the medical examination with popular tests e. How the study benefits others.Suggestions for the future from focus groups and telephone interviews (1). in relation to previous phases. the study in general Information about the study. the population.

Suggestions for the future from focus groups and telephone interviews (2)  Would like to be sent a set of memory test questions to prepare beforehand!  Would like questions to reflect retirement  Reduce the length of the questionnaire  Addressing travel and access to medical examinations .

to population. individual.g. Pitch information between lay and scientific. comparisons to average.Recommendations from the Whitehall study     Foster loyalty to the study Invite people by departments Introduce popular tests e.  Continue with. Presentation by PI. PSA. eyes Give more information. comfortable examination surroundings and continue to offer home visits  Exit interview to record reasons for withdrawal . good refreshments. hearing.

 Continue to be flexible about support of travel needs  Examine ways of shortening the questionnaires  Ask participants what would help them continue participating.Recommendations contd.more involvement participatingin questionnaires/medical tests .

We will be producing a short summary to be widely distributed of ways in which this might be achieved .Conclusion  Our major conclusion is that longitudinal studies are facing serious problems of drop out and are anxious to find ways of avoiding this  Our contacts with other studies. including the Whitehall II study indicate their willingness to consider ways of retaining participants.

uk .mein@sgul.uk  c.ac.seale@qmul.uk  s.ac.uk  g.Further information Article reporting the literature review Quality in Ageing (Vol 9 issue 4 Dec 2008)  anthea.ac.tinker@kcl.uk  r.kingston.ashcroft@qmul.bhamra@natcen.ac.ac.