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Parkinson’s disease – palliative care needs assessment tool: adaptation and psychometric testing
  1. Edward William Richfield1,
  2. Victoria Allgar2,
  3. Afaf Girgis3 and
  4. Miriam J Johnson4
  1. 1Medicine for Older People, North Bristol NHS Trust, Westbury on Trym, UK
  2. 2Peninsula Clinical Trials Unit, Plymouth University, Plymouth, UK
  3. 3South Western Sydney Clinical School, University of NSW, Sydney, New South Wales, Australia
  4. 4Wolfson Palliative Care Research Centre, University of Hull, Hull, UK
  1. Correspondence to Dr Edward William Richfield, Medicine for Older People, North Bristol NHS Trust, Westbury on Trym, BS10 5NB, UK; Edward.Richfield{at}nbt.nhs.uk

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.

  • Neurological conditions
  • Symptoms and symptom management
  • Clinical assessment
  • Chronic conditions
  • Supportive care

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.

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Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.

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Footnotes

  • Twitter @MJJohnson_HYMS

  • Contributors All authors contributed to study design, analysis and production of manuscript. EWR conducted data collection with assistance from MJJ. EWR is guarantor.

  • Funding Work was funded by a grant from The Dunhill Medical Trust (RTF38/0111).

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.