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Improvement of Support to Caregivers of Cancer Patients in Basic Palliative Care at Home

Not Applicable
Conditions
Palliative Care
Interventions
Behavioral: The Carer Support Needs Assessment Tool (CSNAT) intervention
Registration Number
NCT03548012
Lead Sponsor
Bispebjerg Hospital
Brief Summary

The aim of the project is to evaluate the use of the caregiver-led 'CSNAT intervention' to identify, prioritize and address support needs among caregivers of cancer patients who are starting in basic palliative care at home in Denmark

Detailed Description

Not available

Recruitment & Eligibility

Status
UNKNOWN
Sex
All
Target Recruitment
135
Inclusion Criteria
  • The patient should have advanced cancer
  • The caregiver and patient should be able to read and understand Danish
  • The caregiver and patient should give written informed consent
  • The patient should be newly referred to basic palliative care (BPC) by home nurses in the municipality.
Exclusion Criteria
  • The caregiver is viewed by the practitioners as being too distressed to be asked about participation
  • The caregiver has a known cognitive impairment precluding participation (based on the practitioners' clinical judgement)

Study & Design

Study Type
INTERVENTIONAL
Study Design
PARALLEL
Arm && Interventions
GroupInterventionDescription
The Carer Support Needs Assessment Tool (CSNAT) interventionThe Carer Support Needs Assessment Tool (CSNAT) intervention('Standard' basic palliative care +) The Carer Support Needs Assessment Tool (CSNAT) intervention.
Primary Outcome Measures
NameTimeMethod
Caregiver strainChange from baseline (enrollment) to day 14

Caregiver strain is measured by the subscale 'Caregiver Strain' in the Family Appraisal of Caregiving Questionnaire for Palliative Care (FACQ-PC). Subscale score range: 1-5. A higher score represents a worse outcome, i.e. more caregiver strain.

Secondary Outcome Measures
NameTimeMethod
Caregiver involvementChange from baseline (enrollment) to day 28

Measured with item 12 in the Caregiving Tasks, Consequences and Needs Questionnaire (CaTCoN). Item score range: 0-100. A higher score represents a worse outcome, i.e. more caregiver dissatisfaction with involvement

Caregiver distressChange from baseline (enrollment) to day 28

Caregiver distress is measured by the subscale 'Caregiver distress' in the Family Appraisal of Caregiving Questionnaire for Palliative Care (FACQ-PC). Subscale score range: 1-5. A higher score represents a worse outcome, i.e. more caregiver distress

Emotional functioningChange from baseline (enrollment) to day 28

Measured by the four emotional functioning items in EORTC Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) supplemented with three selected items from the EORTC Computerized Adaptive Test (CAT) emotional functioning item bank. Item/subscale score range: 0-100. A higher score represents a better outcome, i.e. better emotional functioning

FatigueChange from baseline (enrollment) to day 28

Measured by the three fatigue items in EORTC Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) supplemented with three selected items from the EORTC Computerized Adaptive Test (CAT) fatigue item bank. Item/subscale score range: 0-100. A higher score represents a worse outcome, i.e. more fatigue

Acute hospitalizationsChange from baseline (enrollment) to day 28

Number of acute patient hospitalizations

Survival timeFrom enrollment to up to six months after the project recruitment period has closed

Number of days the patient lives

Caregiver strainChange from baseline (enrollment) to day 28

Caregiver strain is measured by the subscale 'Caregiver Strain' in the Family Appraisal of Caregiving Questionnaire for Palliative Care (FACQ-PC). Subscale score range: 1-5. A higher score represents a worse outcome, i.e. more caregiver strain.

Satisfaction with communication with health care professionalsChange from baseline (enrollment) to day 28

Measured by the subscale 'Problems with the quality of information from and communication with health care professionals' in the Cancer Caregiving Tasks, Consequences and Needs Questionnaire (CaTCoN). Subscale score range: 0-100. A higher score represents a worse outcome, i.e. more problems with the quality of information from and communication with health care professionals

Caregiver griefMeasured six months after the patient's death

Measured by the Prolonged Grief Scale-13 (PG-13). Symptom subscale score range: 9-45. A higher score represents a worse outcome, i.e. higher level of prolonged grief symptoms

Place of deathFrom enrollment to up to six months after the project recruitment period has closed

The place in which the patient dies

Satisfaction with information from health care professionalsChange from baseline (enrollment) to day 28

Measured with selected items from the subscale 'Lack of information from health care professionals' in the Cancer Caregiving Tasks, Consequences and Needs Questionnaire (CaTCoN). Item/subscale score range: 0-100. A higher score represents a worse outcome, i.e. more lack of information from health care professionals

Caregiving workloadChange from baseline (enrollment) to day 28

Measured with selected items from the subscale 'Caregiving workload' in the Cancer Caregiving Tasks, Consequences and Needs Questionnaire (CaTCoN). Item/subscale score range: 0-100. A higher score represents a worse outcome, i.e. more caregiving workload

Positive caregiving appraisalsChange from baseline (enrollment) to day 28

Positive caregiving appraisals is measured by the subscale 'Positive caregiving appraisals' in the Family Appraisal of Caregiving Questionnaire for Palliative Care (FACQ-PC). Subscale score range: 1-5. A higher score represents a better outcome, i.e. more positive caregiving appraisals.

Satisfaction with attention from health care professionalsChange from baseline (enrollment) to day 28

Measured by the subscale 'Lack of attention from health care professionals on the caregivers' wellbeing' in the Cancer Caregiving Tasks, Consequences and Needs Questionnaire (CaTCoN). Subscale score range: 0-100. A higher score represents a worse outcome, i.e. more lack of attention from health care professionals

Help from health care professionalsChange from baseline (enrollment) to day 28

Measured with two newly developed items which ask whether the health care professionals have talked with the caregiver about what burdens them, and whether the health care professionals have helped with these burdens. Item score range: 0-100. A higher score represents a worse outcome, i.e. less help from health care professionals

Positive emotional functioningChange from baseline (enrollment) to day 28

Measured by five positively formulated items concerning emotional functioning which were excluded from the EORTC Computerized Adaptive Test (CAT) emotional functioning bank during the development of the item bank. Item score range: 0-100. A higher score represents a better outcome, i.e. more positive emotional functioning

Quality of lifeChange from baseline (enrollment) to day 28

Measured by the two items assessing overall health and quality of life in the EORTC Quality of Life Questionnaire Core 30 (EORTC QLQ-C30). Item score range: 0-100. A higher score represents a better outcome, i.e. better quality of life

Hospice referrals (for in-patient care)Change from baseline (enrollment) to day 28

Number of patients referred to hospice in-patient care

Trial Locations

Locations (10)

Holbæk Home Nursing

🇩🇰

Holbæk, Denmark

Silkeborg Home Nursing

🇩🇰

Silkeborg, Denmark

Haderslev Home Nursing

🇩🇰

Haderslev, Denmark

Esbjerg Home Nursing

🇩🇰

Esbjerg, Denmark

Aalborg Home Nursing

🇩🇰

Aalborg, Denmark

Gentofte Home Nursing

🇩🇰

Gentofte, Denmark

Gladsaxe Home Nursing

🇩🇰

Gladsaxe, Denmark

Hjørring Home Nursing

🇩🇰

Hjørring, Denmark

Næstved Home Nursing

🇩🇰

Næstved, Denmark

Odense Home Nursing

🇩🇰

Odense, Denmark

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