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AgeingKUPANCT02708498

Implementation of Knowledge-Based Palliative Care

A study testing Educational Intervention in people with Ageing, run by Lund University at 30 sites in Sweden.

Completed

Finished. The study has ended and is not enrolling. Results may be posted on the official record.

Official record
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Trial summary

The research on ageing during the last couple of decades has increasingly focused on questions regarding the quality of life and life satisfaction of the old people. Yet the research indicates that when it comes to the final stage of life, the end includes unnecessary suffering and the quality of life drops. Read more about this study

Who is it for?
Any age
Conditions the study is for
Ageing
What is being tested?
Educational Intervention
Could I receive a placebo?
No, everyone receives an active treatment
How many people
1,151 participants
Where
30 sitesSweden
Study dates
9 Apr 2015to 15 Oct 2017
Phase
Interventional
Are there results?
Yes, posted in the registrySummary in the doctors' view

Key requirements

Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.

  • Ages Any age
  • All sexes
  • No healthy volunteers
  • Child, Adult, Older adult

Who may be able to join

  • Older persons living in the participating nursing homes
  • Next of kin to older persons living in the participating nursing homes
  • Staff working at the participating nursing homes
  • Managers working at the participating nursing homes
  • The participating nursing homes must be located in either Kronoberg County or Skåne County in Sweden

Who cannot join

  • Not being cognitive able to participate in interviews or answering the questionnaires

Trial locations and contacts

30 sites in 1 country.

30 sites in 1 country

Sweden30 sites

  • Älmegården

    Älmeboda, Kronoberg County, 360 23

  • Bryggaren

    Alvesta, Kronoberg County, 34230

  • Högåsen

    Alvesta, Kronoberg County, 34235

  • Asken

    Grimslöv, Kronoberg County, 34032

  • Skogsgläntan

    Höör, Skåne County, 24395

  • Kvarngården

    Ingelstad, Kronoberg County, 360 44

  • Åsgården

    Kågeröd, Skåne County, 28677

  • Konga Allhus

    Konga, Kronoberg County, 362 40

  • Åbrinken

    Lagan, Kronoberg County, 34014

  • Ljungberga

    Ljungby, Kronoberg County, 34135

  • Ljungsätra

    Ljungby, Kronoberg County, 34138

  • Brunnsgården

    Ljungby, Kronoberg County, 34183

  • Torsgården

    Lönashult, Kronoberg County, 34253

  • Mårtenslund

    Lund, Skåne County, 224 60

  • Brunnslyckan

    Lund, Skåne County, 22460

  • Norrdala

    Lund, Skåne County, 22466

  • Furuliden

    Moheda, Kronoberg County, 34260

  • Rönnebacken

    Osby, Skåne County, 283 42

  • Solängen

    Ryd, Kronoberg County, 360 10

  • Fästan

    Södra Sandby, Skåne County, 24731

  • Solgården

    Svalöv, Skåne County, 26834

  • Holmagården

    Svedala, Skåne County, 23338

  • Ängslyckan

    Teckomatorp, Skåne County, 26872

  • Örnen

    Tingsryd, Kronoberg County, 362 30

  • Äppelgården

    Urshult, Kronoberg County, 360 13

  • Solhaga

    Väckelsång, Kronoberg County, 362 51

  • Birkagården

    Vaxjo, Kronoberg County, 352 41

  • Hovslund

    Vaxjo, Kronoberg County, 352 44

  • Evelid

    Vaxjo, Kronoberg County, 352 64

  • Björkliden

    Vislanda, Kronoberg County, 34250

Other trials in Sweden

About this study

Official title: Implementation of Knowledge-Based Palliative Care for Frail Older Persons in Nursing Homes

The research on ageing during the last couple of decades has increasingly focused on questions regarding the quality of life and life satisfaction of the old people. Yet the research indicates that when it comes to the final stage of life, the end includes unnecessary suffering and the quality of life drops. Palliative care has traditionally been provided successfully to younger persons dying from incurable illnesses while older people dying of multiple morbidities or "old age" has received far less of this type of care. However, sixty percent of all people who died in Sweden in 2010 were at least 80 years old and it is well known that dying among older people often is a prolonged period of suffering. One reason might be that it is more difficult to identify when the final stages of life begins for older persons.

The purpose of this project is to implement and evaluate how a knowledge-based model for palliative care in nursing homes affects the quality of life and the participation in the care process for older persons in nursing homes and their next of kin. A second aim is to explore the staff's implementation process of palliative care and the role of the leadership. The final aim is to investigate which factors (barriers and facilitators) that affect the implementation process of this model.

Read the detailed description

The project was planned to be conducted using a cross-over design in two counties in south of Sweden based on a feasibility/pilot study that was conducted during fall 2014 co-created palliative care educational intervention through seminars for professionals in nursing homes. Due to a more significant amount of drop-outs compared with expected (and for not receiving the total amount of applied foundation), the plan needed to be revised. The knowledge-based palliative care intervention was conducted as a non-blinded control trial, implemented over a six-month period in 30 nursing homes in two different counties in the south of Sweden (County A and County B). The data collection was made in two sequential periods in each county. First, the intervention was implemented in ten nursing homes in County A (Kronoberg County from April 2015), while ten nursing homes in County B served as a control group. Then, County B implemented the intervention (Skåne county from April 2016), and ten new nursing homes in County A, which had not received the intervention, were chosen as a control group. After the two sequential time periods were data from one intervention and one control group analysed. The selection through voluntary participation resulted in a mixture of both larger and smaller nursing homes in the two counties, as well as both from urban and rural areas.

Every seminar group met once a month and included different professions (unit manager, district nurse, assistant nurse, and other staff i.e. occupational therapist and physiotherapist). There were 5 meetings in each nursing home during a period of 6 months.

Conditions
Ageing
Being tested
Educational Intervention
Keywords
Palliative care, Frail elderly, Comorbidity, Staff Development, Nursing Homes

What participants receive

What participants receive. In a randomised study each person is assigned to one group by chance.

  • Educational InterventionBehavioural

    The seminar groups will be led by two experienced clinical nurses and researchers from the field of palliative care and geriatric care. The educational material consist of six themes; values in palliative care, symptom relief, dignity and a dignified death, collaborative co-creating care, support to next of kin and dialogue with older persons and next of kin about death and dying. The content of the different themes will have a common core for each nursing home but will be adjusted based on the expressed needs of each nursing home. New themes can be created related to the needs of the unique nursing home. The participants in the seminar groups will reflect together over the content of the developed binder of educational material and will relate it to their own work in order to identify areas suitable for changes and/or development.

Study groups in NCT02708498
Study groupRoleWhat they receive
Kronoberg Educational InterventionExperimentalThe educational intervention is provided to ten nursing homes.
Receives: Behavioral: Educational Intervention
Skåne ControlNo interventionThe control group consists of an equal number of nursing homes. This group receives no intervention.
Skåne Educational InterventionExperimentalThe educational intervention is provided to ten nursing homes.
Receives: Behavioral: Educational Intervention
Kronoberg ControlNo interventionThe control group consists of an equal number of nursing homes. This group receives no intervention.

What is being measured

The primary outcome is the main question the study is designed to answer.

  1. World Health Organization Quality of Life-BREF (WHOQOL-BREF)

    World Health Organization Quality of Life-BREF (WHOQOL-BREF) measure quality of life for older persons' at the end of life living in nursing homes.

    Five-point Likert-scale. Higher values mean better outcomes. Total score Min 26. Max 130.

    The range for the sub scale Overall Quality of Life; Min 1 Max 5 The range for the sub scale General health; Min 1 Max 5 The range for the sub scale Physical Health; Min 7 Max 35 The range for the sub scale Psychological; Min 6 Max 30 The range for the sub scale Social relationships; Min 3 Max 15 The range for the sub scale Environment; Min 8 Max 40

    Measured: 9 months

  2. World Health Organization Quality of Life-OLD (WHOQOL-OLD)

    World Health Organization Quality of Life-OLD (WHOQOL-OLD) measure quality of life for older persons living in nursing homes.

    Five point Likert-scale. Higher value means better outcome. Min 24. Max. 120. The range for the all the sub scales are; Min 1 Max 20

    Measured: 9 months

  3. Person-centred Care Assessment Tool (P-CAT)(Patient Version)

    Person-centred Care Assessment Tool (P-CAT) (patient version) measure person-centred care for older persons living in nursing homes. Five point Likert-scale. Higher score means better outcomes. Min 13. Max. 65.

    The range for the sub scale Extent of personalizing care; Min 8 Max 40 The range for the sub scale Amount of organizational and environmental support; Min 5 Max 25

    Measured: 9 months

  4. Person-Centred Climate Questionnaire (PCQ Patient Version)

    Person-Centred Climate Questionnaire (PCQ patient version) measure person-centred care for older persons living in nursing homes. Six point Likert-scale. Higher score means better outcome. Min 17. Max. 102.

    The range for the sub scale Safety; Min 10 Max 60 The range for the sub scale Everydayness; Min 4 Max 24 The range for the sub scale Hospitality; Min 3 Max 18

    Measured: 9 months

  5. Next-of-Kin Participation in Care (NoK-PiC); Psychometric Evaluation

    Next-of-Kin Participation in Care (NoK-PiC) measure participation for next of kin to older persons in nursing homes. The study includes both intervention and control groups. The two scales are 1) Communication and Trust (CaT); and 2) Collaboration in Care (CiC).

    The scales contains nine items each and items are scored from 0 to 4 (agree not at all (=0); agree to a low degree (=1); agree partly (=2); agree to a high degree (=3); and agree totally (=4). The possible score range from 0 to 36 in each of the two scales, and from 0-72 in the total scale. Higher score means better outcomes. This results are based upon a recently published psychometric evaluation by Westergren et al (2020).

    Measured: 9 months

  6. World Health Organization Quality of Life-BREF (WHOQOL-BREF) for Next of Kin

    World Health Organization Quality of Life-BREF (WHOQOL-BREF) measure quality of life for next of kin to older persons in nursing homes. Five-point Likert-scale. Higher values mean better outcomes. Min 26. Max 130.

    he range for the sub scale Overall Quality of Life; Min 1 Max 5 The range for the sub scale General health; Min 1 Max 5 The range for the sub scale Physical Health; Min 7 Max 35 The range for the sub scale Psychological; Min 6 Max 30 The range for the sub scale Social relationships; Min 3 Max 15 The range for the sub scale Environment; Min 8 Max 40

    Measured: 9 months

Secondary outcomes (2)

  1. Person-centred Care Assessment Tool (P-CAT) (Staff Version)

    Person-centred Care Assessment Tool (P-CAT)(staff version) measure person-centred care for staff working in nursing homes. Five-point Likert-scale. Higher values mean better outcomes. Min 13. Max 65.

    The range for the sub scale Extent of personalizing care; Min 8 Max 40 The range for the sub scale Amount of organizational and environmental support; Min 5 Max 25

    Measured: 6 months

  2. Person-Centred Climate Questionnaire (PCQ-S)

    Person-Centred Climate Questionnaire (PCQ-S) measure person-centred care for staff working in nursing homes. Six-point Likert-scale. Higher values mean better outcomes. Min 14. Max 84.

    The range for the sub scale Safety; Min 5 Max 30 The range for the sub scale Everydayness; Min 5 Max 30 The range for the sub scale Community; Min 4 Max 24

    Measured: 6 months

Timeline

From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.

  1. First posted15 Mar 2016 (estimated)
  2. Study start9 Apr 2015
  3. Primary completion20 Jun 2017
  4. Study completion15 Oct 2017

Resources

More details

For doctors and researchers: how the study is designed, who runs it, and its registry IDs.

Study design
Study type
Interventional
Phase
Phase N/A
Primary purpose
Supportive care
Allocation
Non-randomised
Intervention model
Sequential
Model description
The knowledge-based palliative care intervention was conducted as a non-randomized control trial.
Masking
None (open label)
Enrolment
1,151 participants (actual)
IDs, dates and publications
ClinicalTrials.gov ID
NCT02708498
Sponsor's protocol ID
2014-2759
Other IDs
2014-0071
Acronym
KUPA
Status last verified
Oct 2020
First submitted
26 Feb 2016
Last updated
28 Oct 2020
Data monitoring committee
No
Individual data sharing
No

Publications

  • Avik Persson H, Sandgren A, Ahlstrom G. Managers' experiences of implementing palliative care in nursing homes: a qualitative follow-up study after an educational intervention for the staff. BMC Palliat Care. 2026 Aug 11;25(1):238. doi: 10.1186/s12904-026-02276-w.

    PubMed 42576216

  • Persson HA, Ahlstrom G, Ekwall A. Professionals readiness for change to knowledge-based palliative care at nursing homes: a qualitative follow-up study after an educational intervention. BMC Palliat Care. 2022 Jul 20;21(1):132. doi: 10.1186/s12904-022-01018-y.

    PubMed 35854375

  • Ahlstrom G, Rosen H, Persson EI. Quality of Life among Next of Kin of Frail Older People in Nursing Homes: An Interview Study after an Educational Intervention concerning Palliative Care. Int J Environ Res Public Health. 2022 Feb 24;19(5):2648. doi: 10.3390/ijerph19052648.

    PubMed 35270339

  • Bokberg C, Sandberg J. Until death do us part Adult children's perspective of their parents' transition from living at home to moving into a nursing home and the time after death. BMC Geriatr. 2021 Nov 27;21(1):666. doi: 10.1186/s12877-021-02633-9.

    PubMed 34837994

  • Sandgren A, Arnoldsson L, Lagerholm A, Bokberg C. Quality of life among frail older persons (65+ years) in nursing homes: A cross-sectional study. Nurs Open. 2021 May;8(3):1232-1242. doi: 10.1002/nop2.739. Epub 2020 Dec 13.

    PubMed 34482652

  • Westergren A, Ahlstrom G, Persson M, Behm L. Next of kin participation in the care of older persons in nursing homes: A pre-post non-randomised educational evaluation, using within-group and individual person-level comparisons. PLoS One. 2021 Jan 25;16(1):e0244600. doi: 10.1371/journal.pone.0244600. eCollection 2021.

    PubMed 33493153

  • Tjernberg J, Bokberg C. Older persons' thoughts about death and dying and their experiences of care in end-of-life: a qualitative study. BMC Nurs. 2020 Dec 16;19(1):123. doi: 10.1186/s12912-020-00514-x.

    PubMed 33327960

  • Rosen H, Ahlstrom G, Lexen A. Psychometric properties of the WHOQOL-BREF among next of kin to older persons in nursing homes. Health Qual Life Outcomes. 2020 Apr 19;18(1):103. doi: 10.1186/s12955-020-01345-9.

    PubMed 32306965

  • Westergren A, Behm L, Lindhardt T, Persson M, Ahlstrom G. Measuring next of kin's experience of participation in the care of older people in nursing homes. PLoS One. 2020 Jan 31;15(1):e0228379. doi: 10.1371/journal.pone.0228379. eCollection 2020.

    PubMed 32004352

  • Rosen H, Behm L, Wallerstedt B, Ahlstrom G. Being the next of kin of an older person living in a nursing home: an interview study about quality of life. BMC Geriatr. 2019 Nov 21;19(1):324. doi: 10.1186/s12877-019-1343-4.

    PubMed 31752709

  • Bokberg C, Behm L, Ahlstrom G. Next of kin's quality of life before and after implementation of a knowledge-based palliative care intervention in nursing homes. Qual Life Res. 2019 Dec;28(12):3293-3301. doi: 10.1007/s11136-019-02268-9. Epub 2019 Aug 14.

    PubMed 31414348

  • Bokberg C, Behm L, Wallerstedt B, Ahlstrom G. Evaluation of person-centeredness in nursing homes after a palliative care intervention: pre- and post-test experimental design. BMC Palliat Care. 2019 May 31;18(1):44. doi: 10.1186/s12904-019-0431-8.

    PubMed 31151438

  • Ahlstrom G, Nilsen P, Benzein E, Behm L, Wallerstedt B, Persson M, Sandgren A. Implementation of knowledge-based palliative care in nursing homes and pre-post post evaluation by cross-over design: a study protocol. BMC Palliat Care. 2018 Mar 22;17(1):52. doi: 10.1186/s12904-018-0308-2.

    PubMed 29566688

Questions about this trial

What is this clinical trial studying?

A study testing Educational Intervention in people with Ageing, run by Lund University at 30 sites in Sweden.

The full registered description is in the About this study section and the official record.

Who may be eligible to take part?

The sponsor lists 5 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.

Is this clinical trial currently recruiting?

The record says: finished, as of the sponsor's last update on 28 Oct 2020. Status can change between updates, so confirm with the study contact before making plans.

Where is the study taking place?

The record lists 30 sites in Sweden. Whether a site is taking part right now should be confirmed with that site. See every site.

What are the possible benefits and risks?

They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.

Are results available for this study?

Yes. Results are posted in the registry (first posted 2 Sep 2020). A summary is in the For doctors view, and the full results are on ClinicalTrials.gov.

How can a doctor refer a patient or contact the research team?

The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.

What does the primary outcome measure?

World Health Organization Quality of Life-BREF (WHOQOL-BREF) (time frame: 9 months). The study lists 6 primary outcomes in all. It is what the study was designed to measure, not a finding.

Where can I read the original study information?

On the ClinicalTrials.gov record for NCT02708498, which also lists 13 linked publications.

Does a listing mean the treatment is approved or proven to work?

No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.

How often is this information updated?

AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 28 Oct 2020.

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