Condition specific toolkits

In collaboration with the British Liver Transplant Group, British Liver Trust and UK liver transplant centres, Picker has developed and assessed the validity of a Patient Reported Experience Measure (PREM) to understand care experiences of adults receiving a liver transplant. The PREM is available to liver transplant centres to understand care experiences and identify areas for improving care locally and nationally.

The survey covers areas such as:

• Information about condition and treatment
• Communication and information about the transplant operation (before and after)
• Pain management
• Interactions with hospital staff
• Follow-up care and ongoing support
• Impact of liver condition on day-to-day activities

Our sickle cell surveys have been developed with patients and their families, in addition to those providing their care. They focus on patients’ needs and priorities and can be used to gather actionable feedback on care delivery.

The surveys cover:

• Access to advice and support
• Further information for patients and their networks (eg. friends, peers and colleagues)
• Experiences of urgent care, hospital ward admission and outpatient clinic appointments
• Emphasis on communication with staff
• Involvement in care and self-management of sickle cell disease
• There are three survey versions for the following groups:
• Adults aged 16 and older with sickle cell disease
• Parents of children aged 0-15 with sickle cell disease
• Children aged 8-15 with sickle cell disease

The content of each survey is age-appropriate in terms of design and wording, and has been thoroughly tested. Findings from the pilot across England can be viewed here, and the development of the survey has been published here.

Patients diagnosed with pancreatic cancer have the poorest survival prognosis of any cancer and are underrepresented in psychosocial research. This survey has been developed in partnership with Oxford Brookes University to allow patients to describe their experiences of care and supportive care needs to inform future service provision.

The primary measures for this survey are experiences of communication and information, involvement in decisions about care and treatment and supportive care needs.

To read more about the development of this toolkit please click here.

Hypothyroid patients often report dissatisfaction and a poor quality of life. This survey measures care experiences and support needs of these patients.

The survey covers the use of medication, treatment expectations, symptoms, interations with healthcare professionals and overall impact of the condition on their quality of life.

The survey development was funded by pharmaceutical company IBSA with the involvement of the Thyroid Federation International and an academic board.

In collaboration with AbbVie Ltd, Picker’s survey for patients with moderate-severe atopic dermatitis, hidradenitis suppurative and psoriasis, is designed to understand access to and experiences of care and treatment. Findings following development have already been used to make recommendations for commissioners, healthcare professionals, patient support groups and patients.

The survey covers:

• Communication and information with involvement in decisions;
• Opportunity to discuss treatment options
• Quality of life

The survey can be used to cover care from a GP and a dermatologist, and is available to providers of skin conditions (dermatitis, HS and psoriasis) to licence. It enables an understanding of patient experiences of care and quality of life, creating insights that can be used to improve care quality.