1. The identification of all specialist pain clinics in England
A questionnaire, designed to collect information on types of pain services available and their staffing and facilities, has been distributed to both NHS commissioners and providers in England and Wales. The questionnaire was developed through input from a team of chronic pain clinicians, data management experts, an epidemiologist and patient representatives.
The questionnaire collects information on:
A questionnaire will be sent to every NHS Trust and Primary Care Trust to identify the location of all specialist pain clinics within primary and secondary care in England. All clinics will be mapped to provider and Strategic Health Authority within the subsequent national data-set.
This information will be updated on an annual basis by providers but may be may be subject to adhoc updates where necessary e.g. clinic closures etc.
Completeness is expected to be high as all NHS providers should be able to confirm whether they provide specialist pain services through a pain clinic or clinics and basic structural information concerning staffing and various treatments offered.
All the information collected will be validated against the previous data-set from the Pain Audit Collection System (PACS) which identified 206 pain clinics in 2000/2001. Organisational data will also be validated against the HES/SUS data set.
2. The collection of case mix data from every clinic participating in the audit
Following extensive consultation with chronic pain specialists from the British Pain Society a set of data fields have been developed to record case mix data. The information is recorded via a secure online data collection system which allows clinicians to record case mix data about each new patient that they treat within their clinic. All the data recorded is stored in a secure database which will comprise the national database of chronic pain patients. The collection process was initially piloted by 12 pain clinics, based in both primary and secondary care, over a period of three months.
Case mix data is recorded through a secure online submission system. Clinicians are encouraged to enter the data directly onto the system at the time of the patients consultation but data can also be recorded on paper based templates and then added to the system in batches. Case mix data will only be recorded from new patients having their first consultation. Once data has been entered onto the system all of the fields are editable so that any necessary amendments can be made. Logins can be created for consultants, administrative staff and non medical practitioners working within the clinic. All information and any associated edits are time and user stamped within the data base.
Case mix data will be collected for a three month period during this phase of the audit from all participating clinics. Data confidentiality and patient consent
Data will only be collected from patients who expressly consent to participate in the audit process. All patients consent forms will be scanned and stored digitally. Patient confidentiality is ensured in the production of published statistics by suppressing any figures that are based on a count of less than 5 including zeroes. Any number, rate or percentage derived from such counts is suppressed. Figures that may be disclosive when subtracted from totals, subtotals or other published totals are also suppressed. In these instances information is presented as "sample size too small".
The following fields will be recorded by the clinic for each patient:
3. The collection of Patient Reported Outcome Measures
The next phase of the audit will be the collection of Patient Reported Outcomes (PROMS) from new patients participating in the audit. We have developed a national framework for collecting and processing the PROMS questionnaires. At the end of the collection process we will be able to directly link the outcomes data supplied by patients and the case mix data provided by their clinicians, with these two data sources we should be able to provide a detailed picture of the care delivered by NHS specialist pain services.
Outcomes data will be recorded by patients via a paper based questionnaire. The data collected will be based upon the Brief Pain Inventory (BPI) Short form, The EuroQol 5D questionnaire and a set of bespoke questions developed for the audit. The BPI Short form and EuroQol 5D are both well established through clinical trials as an effective means of collecting patient outcomes in this area. Patients will be recruited to participate in the audit either by being sent a questionnaire in the post with the confirmation letter for their initial consultation or by completing a questionnaire in the waiting room prior to their consultation. Once completed the questionnaires will be collected from the clinics and scanned by a central service. 6 months after the patient's initial consultation they will be sent a paper follow up questionnaire which they can complete and return with a pre-paid envelope. These follow up questionnaires will also be scanned by the central service and all the information will be linked in the database.
Data will only be collected from patients who expressly consent to participate in the audit process. All patients consent forms will be scanned and stored digitally. Confidentiality of patient identifiers is ensured by an encryption key unique to each contributing hospital. Patient confidentiality is ensured in the production of published statistics by suppressing any figures that are based on a count of less than 5 including zeroes. Any number, rate or percentage derived from such counts is suppressed. Figures that may be disclosive when subtracted from totals, subtotals or other published totals are also suppressed. In these instances information is presented as "sample size too small".
Case mix data will be collected for a three month period during this phase of the audit from all participating clinics.
The following data items will be collected from participating patients:
Brief Pain Inventory Short Form
EuroQol 5D questionnaire (Mobility, Self Care, Impact of pain on 'Usual Activities' , Anxiety / Depression & Overall Health State)
How easy was it for you to find out about your local pain services?
Where did you find out?
When did you first seek medical help for your pain condition?
Does the pain prevent you from working or being able to seek work?
If you are in work have you had to reduce your hours due to your pain?
Were you provided with information on how to manage your pain?
How useful did you find this information?
Were you offered an appointment on a self management programme to help you cope with your pain?
How satisfied where you with your involvement in planning the course of your treatment?
Did any treatment started by your pain management facility lead to an unexpected admission to hospital within 48 hrs?
Do you feel you have been helped to better understand and manage your pain?
Is this your first attendance at the pain facility?
Due to your pain have you received medical treatment within the NHS in the last 6 months?
If Yes, did this treatment include a visit or visits to: General Practice (GP), Hospital A&E Department, Physiotherapy, Other