Improving the care of the caregivers of General Practice ... · b. Palliative care services...

www.uq.edu.au/health "Sustainable Development in Primary Care”

The Discipline of General Practice

Improving the care of the caregivers of palliative care patients: randomized controlled trial of the Caregiver Needs Assessment Tool

Geoffrey Mitchell1, Afaf Girgis2,3, Moyez Jiwa4,

David Sibritt3, Letitia Burridge1

1.University of Queensland, Brisbane, Australia

2.Centre for Health Research and Psycho-oncology

3.Newcastle University, Newcastle, Australia 4.Curtin University, Perth Australia



Pa#entswithadvancedcancerareveryillandaretheunderstandablefocusofa6en#onofhealthprofessionals.

MosthaveCaregiverswhoalsohaveneedsarisingfromtheburdenofcaring,andpre‐exis#nghealthandsocialneeds.

Caregiverexhaus#onisamajorcauseofhospitalisa#onofpa#ents,andmayleadtothepa#entdyingawayfromhomewherethisisnotthepa#ent’swish.



Who cares for Caregivers?

Patients – Oncologist, Radiation oncologists, surgeons, palliative care, GPs

Caregivers – informal arrangements

Hypothesis:

That caregiver needs, if addressed by their GP, improve their outcomes compared to normal care.



Trial design

Randomised controlled trial of the Needs Assessment Tool- Caregivers (NAT-C) and supporting documentation vs normal care



What the NAT-C should contain

Questions on:

•  Information for the caregiver,

•  Practical caring,

•  Personal health and wellbeing,

•  Relationships with the patient and significant others,

•  Issues around meaning and identity



Desirable qualities of a potential tool

Caregivers GPs OtherHPs

 Basic,simpleformat  Keepitsimple  Short

 Non‐jargon,simple  Non‐technical  Non‐clinicallanguage

 Spaceforcomments

 Explanatoryintroduc#on

 Briefexplana#on Conveyvalue

 Goodpreamble

 AbletobediscussedwithGP TalkingtoGPmoreimportant

 TalkingtoGPmoreimportant Useasaprocessover#me

 Useasframeworkfordiscussion Useformasaprocess

“Fillingoutaformisnotgoingtowork…[but]itcouldtaketheformofa listofareasthatmaybethecaregiverwouldwanttotalktothedoctorabout”[GP,1118,p.9].



Trial Design- Efficacy Trial

Patients are provided the NAT-C and ask for a long appointment with their GP .

Research staff visit the GP to familiarise them with the NAT-C. Also provide them with a kit that provides resources to meet likely patient need.

Second appointment and NAT-C at three months (accounts for likely rapid change in needs)

Data collection at 0,1,3,6 months.



NAT-C



Recruitment strategy- 520 patients

Where do caregivers congregate?? a.  Oncology clinics b.  Palliative care services

Different approaches to patients depending on local requirements a.  Approach the caregivers in the clinic waiting

area b.  Research officers in a unit identify and approach

carers at the time of treatment. c.  Patients at time of referral to a larger palliative

care service assessed by admissions clerk for eligibility.



Recruitment Results – 10 weeks

CAREGIVERS Caregivers approached 94 Agreed to participate 54 (5.4 /wk Target 10/wk) Being followed up 9 (67% acceptance) Refused 18 Not Ready 4 Ineligible 4 Not contactable 4

GPs GP - RA visits 14 Refusals 0



Attempts to increase recruitment

Further recruitment through largest palliative care service

Another oncology service being added.



Dissemination strategy

If proves effective:

Intent to distribute NAT-C through Oncology Clinics



Conclusions

High recruitment target achievable by identifying where they congregate

Approaching the patient’s GPs after the caregiver-patient agrees to participate is acceptable.

Improving the care of the caregivers of General Practice ... · b. Palliative care services...

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