Parkinson’s disease – palliative care needs assessment tool: adaptation and psychometric testing

Abstract

OBJECTIVE: Parkinson's disease is a progressive, life-limiting disease, which benefits from structured palliative care. Systematic recognition and triage of needs helps facilitate care, allows focused referral to specialist palliative care and aids sustainability of services. Existing palliative care tools for Parkinson's are patient/caregiver completed and focus on quantification rather than identification of the need. The Needs Assessment Tool: Progressive Disease in Cancer was designed for rapid identification of unmet needs in cancer. We describe adaptation and psychometric testing of the tool for Parkinson's disease (NAT:Parkinson's disease). METHODS: Set in secondary care, Parkinson's disease outpatient clinics in the UK, this study included people with Parkinson's, age >18, including all disease stages. People with atypical Parkinsonian syndromes were excluded. Adaptation was made using systematic review and focus groups. Construct validity was tested in 50 consecutive patients against established patient and caregiver measures, analysed with Kendall's Tau B. Inter-rater reliability, using video consultations, were calculated in broad range of clinicians involved in Parkinson's disease care using a weighted kappa; 0-0.2=slight, 0.21-0.40=fair, 0.41-0.60=moderate, 0.61-0.80=substantial and p<0.05 indicative of statistically significant agreement. RESULTS: Validity was substantial for two, moderate for five and fair for four constructs. Inter-rater reliability was substantial for one, moderate for three and fair for six constructs. Two constructs failing to demonstrate fair reliability did show very high percentage agreement. CONCLUSION: Findings support the suitability of the NAT:Parkinson's disease for everyday clinical use in the identification and triage of unmet palliative need for people with Parkinson's disease.