Palliative care in Parkinson's disease : developing a needs assessment tool

Richfield, Edward William

September 2015

Thesis or dissertation

© 2015 Edward William Richfield. All rights reserved. No part of this publication may be reproduced without the written permission of the copyright holder.

Background: Parkinson’s disease (PD) is a common, life-limiting, neurodegenerative condition. Despite calls for improved access to palliative care, provision is lacking, due in part to poor understanding and recognition of palliative care needs. Where services exist, negotiating the chronic-palliative interface is challenging.

Aims: 1) To establish the palliative needs of people living with PD.
2) To adapt and clinimetrically test a palliative assessment tool for PD.

Method: A sequential mixed method design was adopted:

Aim 1: Systematic review and synthesis of qualitative evidence and primary qualitative study (focus groups and semi-structured interviews). Combined findings used to adapt a palliative care assessment tool for Parkinson’s disease.

Aim 2: Face and content validity tested by expert panel. Construct validity examined in 50 people with PD and their carers. Inter-rater reliability examined in broad range of clinicians using video consultations.


Aim 1 – Four lines of argument were identified: i) Information tension, ii) care tension, iii) interpersonal negotiations, iv) intra-personal negotiations. The response to diagnosis, carer vigilance and presence of disease milestones were highlighted.

Aim 2 - Construct validity was good (tau B > 0.6) for two constructs, moderate (>0.4) for five and fair (>0.2) for the remainder. Reliability as measured by kappa was moderate (kappa >0.4) for four, fair (>0.2) for five and poor for four constructs. Two constructs with poor kappa are explained by extremely high percentage agreement.

Conclusions: Adaptation of the NAT:Parkinson’s disease has been successful, with clinimetric properties supporting use by a range of clinicians. Future studies should examine utility within integrated services.

Hull York Medical School, The University of Hull and the University of York
Johnson, Miriam (Miriam J.)
Sponsor (Organisation)
Dunhill Medical Trust
Qualification level
Qualification name
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