OptCare: Optimising palliative care for older people in the community
| ISRCTN | ISRCTN03393115 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN03393115 |
| Secondary identifying numbers | 13275 |
- Submission date
- 10/10/2012
- Registration date
- 05/06/2013
- Last edited
- 07/07/2016
- Recruitment status
- No longer recruiting
- Overall study status
- Completed
- Condition category
- Other
Prospectively registered
Protocol
Statistical analysis plan
Results
Individual participant data
Record updated in last year
Plain English Summary
Not provided at time of registration
Contact information
Dr Catherine Evans
Scientific
Scientific
King's College London
Cicely Saunders Institute
Bessemer Road
Denmark Hill
London
SE5 9PJ
United Kingdom
 ORCID ID |
0000-0003-0034-7402 |
|---|---|
| Phone | +44 207 848 5579 |
| catherine.evans@kcl.ac.uk |
Study information
| Study design | Non-randomised observational cross-sectional study |
|---|---|
| Primary study design | Observational |
| Secondary study design | Non randomised controlled trial |
| Study setting(s) | Hospital |
| Study type | Quality of life |
| Participant information sheet | Patient information can be found at http://www.csi.kcl.ac.uk/files/Link%20to%20patient%20information%20sheet.pdf |
| Scientific title | Optimising palliative care for older people in community settings: development and evaluation of a new short term intergrated service |
| Study acronym | OptCare |
| Study hypothesis | The aim of this study is to develop and evaluate the feasibility of the new STIPC service for frail older people in community settings (including care homes) delivered through integrated working between specialist palliative care services and community nursing teams, and close with GPs and geriatricians. |
| Ethics approval(s) | NRES Committee South East Coast - Brighton and Sussex, 24/09/2012, ref: 12/LO/1367 |
| Condition | Primary Care Research Network / Palliative care |
| Intervention | The research methods follow the Medical Research Council guidance for the development and evaluation of complex interventions. Phase 1: Intervention development involves a post-bereavement survey to determine preferences for care and palliative care outcomes by place of death for older people (n=900); and a stakeholder consultation with recipients of care and service providers/commissioners, on the survey findings to develop the intervention and then, an on-line/postal survey on the proposed components and outcomes. Followed up at 2 months Phase 2: Participants were randomly allocated to intervention or control group following consent. The intervention arm involved a service delivered by two palliative care teams working with four community nursing teams in a single Community NHS Trust. The new service involved up to three visits in the community by the specialist palliative care teams to provide an extra layer of support over a 12 week period. The control arm received their usual care provided by their GP or community nursing team. After 12 weeks, this group were offered the intervention however there was no research follow-up for this group beyond the 12 weeks from consent. Both groups were given questionnaires to complete at baseline, 6 weeks and 12 weeks and the GP records were followed up for 6 months. The intervention group were also invited to take part in a qualitative interview after the 12 week study period. |
| Intervention type | Other |
| Primary outcome measure | Primary outcome as of 05/07/2016: Five key symptoms are measured using the integrated Palliative care Outcome Scale at baseline, 6 weeks and 12 weeks (primary end point). Original primary outcome: Palliative care Outcome Scale |
| Secondary outcome measures | Secondary outcomes as of 05/07/2016: 1. Assistance with activities of daily living is measured using the Barthel Index at baseline and 12 weeks questionnaires 2. Performance status is measured using the Australia Karnofsky Index at baseline and 12 weeks questionnaires 3. Carer burden is measured using the Zarit carer burden at baseline and 12 weeks questionnaires 4. Service use and cost is measured/calculated using the Client Service Receipt Inventory at baseline and 12 weeks questionnaires 5. Survival is measured by reviewing GP medical records for mortality Original secondary outcomes: 1. Client Service Receipt Inventory 2. EQ5D 3. QUALYCare survey 4. Texas Revised Inventory of Grief |
| Overall study start date | 24/09/2012 |
| Overall study end date | 06/05/2016 |
Eligibility
| Participant type(s) | Patient |
|---|---|
| Age group | Senior |
| Sex | Both |
| Target number of participants | UK Sample Size: 900 |
| Participant inclusion criteria | Inclusion criteria as of 07/07/2016: Phase one: 1. Older adults living with frailty using one of the participating community groups or residing in the participating care home; or 2. Carers of older adults (either informal carers e.g. family members or a carer working as a volunteer for one of the participating charitable organisation supporting older people in community settings) 3. Adults with capacity to give informed consent and communicate in English Phase two: 1. The service providers are health or social care practitioners providing community based services including: specialist palliative care, general practice, community nursing, end of life care facilitators, dementia services and social care, providing services in the locality of Sussex Community NHS Trust 2. The commissioners are leads for end of life care services and are identified from the Care Commissioning Groups in the study site 3. Voluntary sector representatives are local individuals representing local/national organisations supporting/advocating for older people, e.g. Age UK, Alzheimer Society, Brighton and Hove Older People’s Council, Carers Centre Brighton and Hove Original inclusion criteria: Individuals who registered the death of a person who died: 1. In the study site 2. In the 4-10 months prior to survey administration 3. Aged 75 years and over 4. From cancer or selected non-malignant illness common in advanced age 5. Died in a community setting (e.g. at home, care home or hospice) or hospital 6. Male or female participants |
| Participant exclusion criteria | 1. Individual included in the National VOICES survey administered by Office for National Statistics (ONS) in 2012 2. Deaths where an informants address is missing 3. Deaths where an informant was an official (e.g. solicitor) or other identified person who would not be able to provide the required information |
| Recruitment start date | 06/01/2014 |
| Recruitment end date | 18/03/2016 |
Locations
Countries of recruitment
- England
- United Kingdom
Study participating centre
Sussex Community NHS Foundation Trust
Brighton General Hospital
Elm Grove
Brighton
BN2 3EW
United Kingdom
Elm Grove
Brighton
BN2 3EW
United Kingdom
Sponsor information
King's College London
University/education
University/education
School of Social Sciences & Public Policy
London
WC2R 2LS
England
United Kingdom
| Website | http://www.kcl.ac.uk/ |
|---|---|
"ROR" |
https://ror.org/0220mzb33 |
Funders
Funder type
Government
NIHR Trainees Coordinating Centre (UK)
No information available
Results and Publications
| Intention to publish date | 01/08/2017 |
|---|---|
| Individual participant data (IPD) Intention to share | Yes |
| IPD sharing plan summary | Available on request |
| Publication and dissemination plan | 1. The development work has been accepted for publication in Journal of the American Geriatrics Society (JAGS) and Age and Ageing (see below). Findings from the stakeholder and focus groups have also been presented orally and as a poster at the 9th World Research Congress of the European Association of Palliative Care, 9-11th June 2016, Dublin, Ireland and at the Palliative Care Congress, 9th-11th March 2016, Glasgow. Bone AE, Morgan M, Maddocks M, Sleeman KE, Wright J, Taherzadeh S, Ellis-Smith C, Higginson IJ, and Evans CJ ‘Developing a model of short-term integrated palliative and supportive care for frail older people in community settings: perspectives of older people, carers and other key stakeholders’ Age and Ageing 2016 (in-press) 2. Findings from the post-bereavement survey have also been presented at the Expo and Awards, Kent, Surrey and Sussex Academic Health Science Network, Lancaster Hotel, London 19th January 2016 and the International Research Conference EAPC, Copenhagen 2015 (Oral presentation): Bone AE, Gao W, Gomes B, Sleeman KE, Maddocks M, Wright J, et al. Factors Associated with Transition from Community Settings to Hospital as Place of Death for Adults Aged 75 Years or Older: A Population-Based Mortality Follow-back Survey. Journal of the American Geriatrics Society. 2016 (in press). 3. Submission of the main paper to BMC Medicine |
| IPD sharing plan |
Editorial Notes
07/07/2016: The inclusion criteria of the study have been updated.
05/07/2016: The recruitment dates have been updated from 15/10/2012 - 14/12/2012 to 06/01/2014 - 18/03/2016, and the overall trial end date has been updated from 14/12/2012 to 06/05/2016. In addition, the trial participating centre has been added (replacing King's College London) as well as the study contact's ORCID ID, availablility of participant level data, and addition of the interventions for the feasibility study. The outcome measures have also been updated.
24/06/2016: No publications found, verifying study status with principal investigator.
