Condition category
Signs and Symptoms
Date applied
23/01/2004
Date assigned
23/01/2004
Last edited
15/12/2008
Prospective/Retrospective
Retrospectively registered
Overall trial status
Completed
Recruitment status
No longer recruiting

Plain English Summary

Not provided at time of registration

Trial website

Contact information

Type

Scientific

Primary contact

Dr Julia Addington-Hall

ORCID ID

Contact details

Department of Palliative Care and Policy
Guy’s
King’s and St Thomas’ School of Medicine
New Medical School
Bessemer Road
London
SE5 9PJ
United Kingdom

Additional identifiers

EudraCT number

ClinicalTrials.gov number

Protocol/serial number

PSI12-30

Study information

Scientific title

Acronym

Study hypothesis

A major obstacle to research in palliative care is the lack of reliable and valid methods of collecting information on patient and family outcomes. The views of patients can be very difficult to obtain as many are too ill to be interviewed or to complete a questionnaire by the time they are referred to palliative care. In addition, only half of terminally ill cancer patients and fewer than a tenth of patients with non-malignant diseases who die receive specialist palliative care. Using patients as sources of data on the quality of care is therefore likely to lead to an incomplete picture of these services. An alternative method is to collect information from bereaved relatives and friends in the months after the patient's death. This retrospective approach has been used in a number of influential palliative care studies. Although there is uncertainty about the extent to which the views of bereaved relatives reflect those of the patients themselves, the great advantage is that by drawing random samples from death registrations it is possible to get information on a complete population of people who die - not just those referred to specialist services or, indeed, those known to be dying.
To date, retrospective surveys of care for the dying have been interview-based. However, interview surveys are costly to execute. For many purchasers and providers the cost of an interview survey of bereaved relatives is likely to be prohibitive. Alternatively, self-completed postal questionnaires are cheaper than interviews and need fewer trained staff to administer and analyse. A postal questionnaire which assesses use of and satisfaction with services for the dying could, therefore, be a useful addition to the limited measures available to health districts and service providers seeking to evaluate services for the dying.
However, before recommending that a questionnaire be used to collect this information it is necessary to establish that this method of data collection is acceptable to bereaved respondents, and to understand whether and how responses and information collected in this way differs from that obtained in an interview survey. We therefore developed a short form of the interview schedule used successfully in previous nationally representative samples, and which covered both primary and secondary care. In the study we have investigated the effect of administering it by post on response rate, response bias and on the nature of responses to questions on service used, unmet needs for and satisfaction with services. Following consultation with health purchasers and providers a shortened version of the Regional Study of Care for the Dying (RSCD) interview schedule was developed. This is called VOICES (Views Of Informal Carers - Evaluation of Services) and contains 42 questions about care received in the last year of life.

Ethics approval

Not provided at time of registration

Study design

Randomised controlled trial

Primary study design

Interventional

Secondary study design

Randomised controlled trial

Trial setting

Not specified

Trial type

Not Specified

Patient information sheet

Condition

Symptoms and general pathology: Pain

Intervention

1. Postal questionnaire
2. Interview questionnaire

Intervention type

Other

Phase

Not Specified

Drug names

Primary outcome measures

Questionnaire responses. Of the 431 informants who were sampled for this study, 230 agreed to take part giving a response rate of 53%. This corresponded to 56% of those approached to become postal respondents and 52% of the informants approached to become interviewees. These results demonstrate that the postal questionnaire is a viable alternative to interviews for use in collecting information on outcomes in palliative care, at least in terms of response rate. Overall the results of this study show that the postal questionnaires are a viable alternative to a face-to-face interview in retrospective bereavement surveys of care for the dying. However, particular care needs to be paid to ensuring that the wording of the questionnaire is ambivalent and are understood by members of the target population, and, in particular that respondents are helped to identify whether the deceased did in fact receive care from target services. The VOICES questionnaire is currently being revised in the light of these findings.

Secondary outcome measures

Not provided at time of registration

Overall trial start date

23/06/1995

Overall trial end date

20/11/1997

Reason abandoned

Eligibility

Participant inclusion criteria

A random sample of death was drawn from death certificates of residents in an inner London health district who died from cancer and whose death were registered by someone resident in, or near, the district.

Participant type

Patient

Age group

Not Specified

Gender

Not Specified

Target number of participants

230

Participant exclusion criteria

Not provided at time of registration

Recruitment start date

23/06/1995

Recruitment end date

20/11/1997

Locations

Countries of recruitment

United Kingdom

Trial participating centre

Department of Palliative Care and Policy
London
SE5 9PJ
United Kingdom

Sponsor information

Organisation

Record Provided by the NHS R&D 'Time-Limited' National Programme Register - Department of Health (UK)

Sponsor details

The Department of Health
Richmond House
79 Whitehall
London
SW1A 2NL
United Kingdom

Sponsor type

Government

Website

http://www.doh.gov.uk

Funders

Funder type

Government

Funder name

NHS Primary and Secondary Care Interface National Research and Development Programme (UK)

Alternative name(s)

Funding Body Type

Funding Body Subtype

Location

Results and Publications

Publication and dissemination plan

Not provided at time of registration

Intention to publish date

Participant level data

Not provided at time of registration

Results - basic reporting

Publication summary

1998 results in http://www.ncbi.nlm.nih.gov/pubmed/10396521

Publication citations

  1. Results

    Addington-Hall J, Walker L, Jones C, Karlsen S, McCarthy M, A randomised controlled trial of postal versus interviewer administration of a questionnaire measuring satisfaction with, and use of, services received in the year before death., J Epidemiol Community Health, 1998, 52, 12, 802-807.

Additional files

Editorial Notes