The SNAP Story

The SNAP story began back in 2013 when Dr Morag Farquhar (then at University of Cambridge) was leading a longitudinal, mixed method, population-based, multiple-perspective study seeking to identify ways to improve care and support in advanced chronic obstructive pulmonary disease (COPD), called the Living with Breathlessness Study (LwB).

SNAP arose directly from the LwB Study finding of unmet patient support needs and the difficulty these patients had in articulating their support needs spontaneously to health care professionals.

The LwB Study was using the Carer Support Needs Assessment Tool (CSNAT) to identify areas of unmet support need in these patients’ informal carers – it struck us that a similar tool for patients might help overcome some of the barriers to support needs identification and communication that we were identifying in patients.

To begin to explore whether this might work we developed a prototype SNAP tool, modelled on the CSNAT, with permission of Dr Gail Ewing (University of Cambridge) and Professor Gunn Grande (The University of Manchester) who developed the CSNAT. This prototype SNAP tool worked well – it was able to identify a range of unmet support needs in patients with advanced COPD. However, the prototype SNAP tool was not based on evidence from patients – an evidence-based SNAP tool needed to be developed.

The SNAP team was formed at University of Cambridge (Dr Morag Farquhar, Carole Gardener and Dr Gail Ewing) and funding was secured from the NIHR School for Primary Care Research to enable development of the evidence-based SNAP Tool: this was the SNAP1 Study.

SNAP1 involved:

  • a systematic search and narrative review of the literature on patient support needs in COPD
  • further analysis of qualitative data from the Living with Breathlessness Study to identify patient support needs
  • and a series of focus groups (to ensure we had identified the full range of support needs) involving:
    • patients with advanced COPD and their informal carers
    • health care professionals from primary and community care

Patients and health care professionals were positive about the content of the tool (it covered the full range of support needs for them) but:

  • the tool needed a patient-friendly design
  • the tool needed validating
  • the SNAP intervention that the tool would underpin needed to be developed
  • and we needed to pilot SNAP in clinical practice

Funding was secured for this from the Marie Curie Research Grants Scheme: this was the SNAP2 Study, led from University of East Anglia (where Morag had relocated to) in a collaboration with Carole and Gail at Cambridge.

SNAP2 involved:

  • working with an NHS Media Studio to give the SNAP Tool a more patient-friendly design
  • a series of focus groups (to refine the tool and to investigate its face and content validity) again involving:
    • patients with advanced COPD and their informal carers
    • health care professionals from primary and community care
  • a postal survey of over 200 patients with advanced COPD to establish the content and criterion validity of the SNAP Tool (patients completed the tool alongside validated measures of disease impact)
  • design of a SNAP training workshop for health care professionals
  • and piloting of SNAP in three clinical practice settings:
    • primary care
    • community care
    • secondary care

The SNAP Tool was refined and found to be valid in an advanced COPD population.

Patients have said:

“I think it’s really good when you are looking through the list and you sort out what really is your main concern.” – Patient

Health care professionals have said:

“It’s just the patients being in charge of what they want to do […] it’s not about us, it’s about them.” – Community Respiratory Nurse

Patients and health care professionals have also told us that although the SNAP Tool was developed initially for patients with advanced COPD, the generic nature of items on the tool suggest it is relevant for patients with a range of progressive or non-curative conditions e.g. heart failure, frail elderly, Parkinson’s Disease, stroke etc. The SNAP Tool does not include the term “COPD” or refer specifically to lung symptoms.