Response from CHF on the proposal for establishing a PREMS survey for Congenital Heart Disease

Children’s Heart Federation supports the development of PREMs (Patient Reported Experience Measures) and calls also for the development of PROMs (Patient Reported Outcome Measures) because we believe that together they form a useful tool for patients to provide direct feedback on their care to help drive improvement in services.

We feel both are needed because the PREMs are designed to capture a person’s perception of their experience with health care or service. and covers issues such as:

  • Time spent waiting
  • Access to and ability to navigate services
  • Involvement (patient and carer) in decision-making
  • Knowledge of care plan and pathways
  • Quality of communication
  • Support to manage long-term condition
  • Would they recommend the service to family and friends.

Whereas the PROMs captures a person’s perception of their health and measures their perception of changes in their condition due to their care and treatment such as :

  • Quality of life
  • Changes in symptoms
  • Distress
  • Functional ability
  • Self-reported health status
  • Self-efficacy
  • Unmet need

Together they provide a more rounded picture of a patient/carer’s experience of the service.

Last year CHF was part of a group that consisted of patients, patient group representatives, cardiac clinicians and nurses and representatives from NHS England and NHS Improving Quality representatives, with support from Edwards Lifesciences (Industry representative) that developed a tool to measure patient experience specifically in relation to heart valve replacement surgery by developing in-depth, robust and patient validated metrics that can be adopted nationally.

The group developed a series of PREMs for heart valve replacement surgery that was reviewed by patients and service users and refined ready for wider use and validation.

Although it is an important principle that the PREMs questionnaire should not be mandatory we felt it was important to encourage as many patients/carers as possible to participate.   Therefore, we looked at the strengths and weaknesses of different feedback methods e.g. postal survey, online, telephone, apps, touch screen etc.. We were concerned that if the feedback method was limited to one method, the response to the PREMs would be much reduced.

We note that NHS England is proposing to restrict the response method to digital only, and although recognizing the rationale behind that proposal, would ask that they reconsider as we believe that this will exclude responses from patients/carers who do not have easy access to or do not feel comfortable using digital technology.  

The group felt that an important and distinctive feature of their questionnaire was that it was developed by patients and patient organisation representatives for patients, and that it measured experience rather than satisfaction.

It is unclear from the consultation documents what level of involvement there will be from patient/carers or their representatives in the design of the PREMs Tool and so we urge NHS England to ensure that both patient/parents and expert patient representatives are involved in the design process from the outset. It will not be sufficient to consult after the questionnaire has been designed.

CHF is conscious that the PREMs questionnaire results in qualitative rather than quantitative data and that there is no overall indicator or figure for ‘patient experience’. Publication of the responses must make that clear. It will not be accurate to say a trust is the ‘best in the country’. Adding up the number of ‘better’ and ‘worse’ categories to find out which trust did better or worse overall will be misleading . At the same time those interpreting the responses as part of a review of the quality of a particular service, must bear in mind that patient/carers generally loyal to the trust that has provided treatment and that even if a patient/carer feels at the time that they have had a poor experience, there is a tendency on their part to ‘’ forgive and forget’’ once the treatment is complete.

We note the comment within the proposal document that ‘’patient feedback surveys, as a mechanism for children’s participation is almost non-existent’’, however we are aware of some work in this area and would ask that those developing a PREMs questionnaire learn from work already done . See below:

  • Evaluating patients’experiences of heart-valve replacement surgery

bjca_2014_9_5_xxx_patient surveyV3.pdf

  • RCPCH – Development of PREMS – Urgent and Emergency Care

  • Care Quality Commission (CQC), Technical details – patient survey information – National children’s inpatient and day case survey 2014

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