NJR PROMs questionnaires
When you had your hip or knee replacement, you will have been asked to fill in a PROMs questionnaire. PROMs are Patient Reported Outcome Measures. Additionally, you will have been contacted approximately six months after your operation with an invitation to fill out another, slightly different questionnaire. The purpose of these questionnaires is to help the NHS measure and improve the quality of care for all patients undergoing hip or knee joint replacement surgery.
The National Joint Registry is now inviting you to complete an additional questionnaire, approximately one year after your joint replacement operation. We will also be asking you to complete two further questionnaires: one three years after your operation, and one five years after your operation. These questionnaires are identical to the one that you completed six months after your operation.
Why are we doing this?
The questionnaires that you have already completed will provide an invaluable insight into patients’ pain, mobility and general health immediately following surgery, but it is recognised that a large-scale study is necessary to look at the long-term effects of hip and knee replacement surgery. It is widely known that the outcomes of these types of procedures evolve over time, and that some benefits and some risks will not become apparent in the first six months. The recognition of the need to undertake a longer term study has resulted in the NJR receiving permission to send out the additional questionnaires to approximately 35,000 patients.
By undertaking this study, the NJR will be examining success from the point of view of the patient, specifically looking at the reduction in pain, improvement in mobility, and the impact upon your quality of life. This is different to many studies which look at, for example, the type of implant, how it was put in, and how long it lasted before it had to be replaced. These types of study are essential but do not include a patient’s view of the outcome. With your help, the NJR PROMs study will be the largest study of its kind in the UK and will help the NJR to achieve its aims of ensuring the best clinical care for patients and improving the success of hip and knee joint replacements by helping surgeons to identify best practice.
What will happen to your data?
In applying for permission to undertake the study, the NJR had to reassure the relevant authorities that patient confidentiality and protecting the data were given the highest priority. The company undertaking the study is Northgate Public Services who already deliver the national PROMs study, the NJR Centre service (including use of Hospital Episodes Statistics (HES) information) and the Newborn Hearing Screening Programme. Northgate is used to handling patient data and stores all information in its NHS-approved data centre. Your personal data will not be made available to anyone outside of the study.
How will your data be used?
The data from the questionnaires that we are asking you to complete will be linked to the data that you have already provided in the other two questionnaires. This data will be then be linked to data held by the National Joint Registry and HES. Once the data is linked, any information that could be used to identify you will be removed before any analysis takes place.
The data from the NJR will provide information about the type of surgery you had, how the operation was carried out, and what implants you received. The data from HES will provide us with more details about your operation, for example, how long you had to stay in hospital and details of any other operations or illnesses that you may have had following your operation.
The completed, combined dataset will not contain any details that could be used to identify individual patients and will be analysed to provide information to surgeons, hospitals and patients that will enable them to improve the success of hip and knee replacement surgery for all patients.
If you want further information about the National PROMs study or HES, please visit the NHS Choices website or HESonline.
If you require further information about the NJR PROMs study, please contact the Helpline on 0800 783 1775 or send an email to firstname.lastname@example.org.