Proposed data items

The Palliative Care Clinical Data Set is based on spells of care and phases of illness as defined for the Palliative Care Funding Pilots and will support the data requirements of the palliative care funding currency being developed by NHS England. The outcome measures used in this data set have all been validated for use in palliative care. Specialist palliative care services may decide to extend the outcome data set for local use, depending on their own circumstances.

NB: These data items may change for the final data set, which will be published as part of the pilot evaluation report later in 2016. The proposed data items are:

Client data (likely to stay the same across spells):

NHS number
Client ID
Initial of first name
Initial of surname
Person birth date
Person gender
Ethnicity

Spell data:

Referral date
Referral reasons
GP practice code
Care setting: inpatient/community/outpatient
Ready for service
Spell start date
Agency code
Client reference
Client ID
Spell ID
Consent: Y/N/lacks capacity
Location at start of spell
Lives alone?
Preferred place of death
Personalised care plan
EoL diagnoses
Postcode
Disability
Spell end date
Spell outcome
Discharge destination
Place of death
Carer views on care*

Outcomes data (to be collected at each phase change):

Phase ID
Spell ID
Assessment date
Phase of Illness
Date of phase change
Functional status - ability to perform normal daily activities using the Australia-modified Karnofsky Performance Scale
Pain**
Breathlessness**
Anxiety/distress**
At peace**
Information needs**
Views on care**
Assessor
Carer views on care**
Carer support***

*Views on care from St Christopher's Hospice Group's St Christopher's Index of Patient Priorities (SKIPP)

**Questions from Integrated Palliative Care Outcomes Scale (IPOS) reproduced with the kind permission of Cicely Saunders International

***Adapted from Picker and also used in Question 5 of the VOICES national survey of the bereaved

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Palliative Care Clinical Data Set