Patient Outcomes in Pain Management

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1 Patient Outcomes in Pain Management Specialist pain services aggregated data Report for period ending 3 June 214

2 About the electronic Persistent Pain Outcomes Collaboration (eppoc) eppoc is a new program which aims to help improve services and outcomes for patients experiencing chronic pain through benchmarking of care and treatment. eppoc is an initiative of the Faculty of Pain Medicine, and has been further developed in recent years by the Faculty, the Australia Pain Society and the wider pain sector. eppoc involves the collection of a standard set of data items and assessment tools by specialist pain services throughout Australia and New Zealand to measure outcomes for their patients as a result of treatment. This information will be used to develop a national benchmarking system for the pain sector, which will lead to better outcomes and best practice interventions for patients in chronic pain. The information will also enable development of a coordinated approach to research into the management of pain in Australasia. Participation in eppoc is voluntary and aims to assist pain management service providers to improve practice. epicentre (the software purpose-built for eppoc) helps to achieve this by; providing clinicians with an approach to systematically assess individual patient experiences defining a common clinical language to streamline communication between pain management providers facilitating the routine collection of national pain management data to drive quality improvement through reporting and benchmarking The eppoc dataset includes the following assessment tools: Brief Pain Inventory (BPI) i, Depression, Anxiety and Stress Scale (DASS) ii, Pain Self-Efficacy Questionnaire (PSEQ) iii and Pain Catastrophising Scale (PCS) iv. The eppoc team is located within Australian Health Services Research Institute at the University of Wollongong. If you would like more information about eppoc please visit our website at us at eppoc@uow.edu.au or phone (2)

3 Contents Introduction... 1 Section 1 Summary of data and outcomes included in this report Data summary Patient reported outcome measure summary... 3 Section 2 Outcome measures in detail Outcome measure 1 Assessment tools Change from referral to post-discharge follow-up Change from referral to episode end Change from pathway start to pathway end Outcome measure 2 Ability to work Outcome measure 3 Health service use Outcome measure 4 Pain frequency Outcome measure 5 Time from referral to first contact Outcome measure 6 Medication use Section 3 - Descriptive analysis Profile of pain management patients Profile of pain management episodes Profile of pain management pathways References Appendix A Item completion Appendix B Relationship between levels of eppoc data Acknowledgements i Xxx

4 List of Tables Table 1 Number and percentage of patients, episodes and pathways 2 Table 2 Average outcome measure scores 3 Table 3 DASS severity ratings 5 Table 4 Assessment tools Average change from referral to post-discharge follow-up 6 Table 5 Assessment tools Change from referral to episode end 1 Table 6 Assessment tools Change from pathway start to pathway end 14 Table 7 Assessment tools Pathway start score and change from pathway start to end by pathway type 18 Table 8 Work status 19 Table 9 Pain affects work or study 19 Table 1 Health service use (median number of times used in the last 3 months due to pain) 21 Table 11 Pain frequency item (percentage of patients in each group) 22 Table 12 Time from referral to first contact 23 Table 13 Medication use 24 Table 14 Sex 25 Table 15 Indigenous status 25 Table 16 Country of birth 26 Table 17 Interpreter required 26 Table 18 Communication assistance 26 Table 19 Age at referral by sex 26 Table 2 Age group at referral by sex - distribution 27 Table 21 BPI Main pain site 27 Table 22 BPI Number of pain sites 27 Table 23 Referral source 28 Table 24 Cause of pain (precipitating event) 28 Table 25 Cancer pain 28 Table 26 Comorbidities 29 Table 27 Pain duration 29 Table 28 Episode start mode 29 Table 29 Episode end mode 3 Table 3 Length of episode - summary 3 Table 31 Length of episode - distribution 3 Table 32 Number of pathways per episode 3 Table 33 Service intensity - time per episode 31 Table 34 Service intensity number of service events per episode 31 Table 35 Number of pathways by pathway type 31 Table 36 Average pathway length (in days) by pathway type 32 Table 37 Service intensity - time per pathway 32 Table 38 Service intensity number of service events per pathway 32 Table 39 Item completion (percent complete) - patient level 34 Table 4 Item completion (percent complete) - episode level 34 Table 41 Item completion assessment tools 35 Xxx ii

5 List of Figures Figure 1 Assessment tools - Change from referral to post-discharge follow-up... 7 Figure 2 Assessment tools - Change from referral to episode end Figure 3 Assessment tools - Change from pathway start to pathway end Figure 4 Pain affects number of hours and type of work - Change through episode... 2 Figure 5 Health service use from referral to follow-up Figure 6 Pain frequency - Change through episode Figure 7 Average number of days from referral to first contact (episode start) iii Xxx

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7 Introduction eppoc aims to assist services to improve the quality of the pain management they provide through the analysis and benchmarking of patient outcomes. In this, the first eppoc report, data submitted to 3 June 214 are summarised to enable participating services to assess their performance and compare this with outcomes achieved by other services. This report is broken into three sections: Section 1 provides a summary of the data and outcomes included in this report. Section 2 presents a more detailed analysis of the outcome measures. Section 3 provides descriptive analysis at each of the patient, episode and pathway data levels. In each of the three sections, data and analysis for is presented alongside those for all services for comparative purposes. The figures reflect all pain management services who submitted data to 3 June 214. The data from 12 services are included in this report. The outcome measures included in this report were agreed upon by representatives of the pain sector. Although no benchmarks for these outcomes have been included in this report, these will be incorporated in future reports when the volume of data is large enough to enable their creation. The process of reporting and benchmarking against other services provides opportunities to understand the services that are provided to patients, the outcomes patients experience and also to generate research opportunities focused on demonstrating variations in practice and outcomes. Please note that some tables throughout this report may be incomplete. This is because some items may not be applicable to a particular service or it may be due to data quality issues. Please use the following key when interpreting the tables: na u The item is not applicable The item was unavailable/unable to be calculated due to missing or invalid data. Data in the tables in this report are determined by a data scoping method. This data scoping method defines what data are included and can vary from table to table. Users should take note of the data scoping method described for each table. 1 Xxx

8 Section 1 Summary of data and outcomes included in this report 1.1 Data summary Data were received from a total of 12 services who provided information on 2853 patients. In total, these patients had 2861 episodes of care and 177 pain management pathways. The table below includes data for all patients, episodes, pathways and questionnaires that were active in the reporting period. Table 1 Number and percentage of patients, episodes and pathways Number of patients 2853 Number of episodes 2861 Number of pathways 177 Number of questionnaires returned 2537 Average number of pathways per episode* 1. Number of group pathways 513 Number of individual pathways 46 Number of concurrent pathways 132 Number of one-off pathways 26 Response rate to questionnaires (%) 77.6 * Average number of pathways per episode is only calculated for closed episodes that ended within the reporting period. The relationship between the different levels of information collected under eppoc (patient, episode, pathway, service event and questionnaires) is shown in Appendix B. Xxx 2

9 1.2 Patient reported outcome measure summary This table shows patients average scores across the assessment tools for all questionnaires received in the reporting period. reported on: referral questionnaires questionnaires at the start of a pathway in an episode questionnaires at the end of a pathway in an episode post-discharge follow-up questionnaires. In comparison, all services reported on: 227 referral questionnaires 81 questionnaires at the start of a pathway in an episode 48 questionnaires at the end of a pathway in an episode 14 post-discharge follow-up questionnaires. Patients in each of the four time points are not necessarily the same. Therefore follow-up and pathway end scores are not necessarily representative of patients who completed earlier ratings. This comment applies equally to the remaining tables in this report unless otherwise noted. Non-valid scales and subscales have been excluded from this table. See Appendix A for more information on the volume and proportion of missing responses. Further information on assessment tools and subscales can be found in Section 2 of this report. Table 2 Average outcome measure scores Outcome measure Referral Pathway Pathway Follow-up Referral Pathway Pathway Follow-up start end start end n=227 n=81 n=48 n=14 BPI Average Pain Interference DASS Depression Anxiety Stress PCS Total PSEQ* Total * Note: For the PSEQ assessment tool, a positive movement in score is an improvement in how patients are able to perform activities despite the pain. See Appendix A for information on item completion. 3 Xxx

10 Section 2 Outcome measures in detail Four standardised assessment tools have been chosen to measure patient outcomes (see below for more information). In addition, pain frequency, the patients ability to work, health service use and time from referral to first contact have also been included as outcomes. Records must have valid start and end scores for the outcome measure to be included in the tables below therefore records where the response is not stated have been excluded from the calculation of percentages in this section. See Appendix A for information on the proportion of missing responses. 2.1 Outcome measure 1 Assessment tools The assessment tools used in this section are: Brief Pain Inventory (BPI) Depression, Anxiety, Stress Scale (DASS) Pain Catastrophising Scale (PCS) Pain Self-Efficacy Questionnaire (PSEQ). Each of these assessment tools are briefly described below. Brief Pain Inventory The BPI identifies the region where the pain is experienced, measures the severity of pain and the degree to which the pain interferes with common activities of daily living. Pain severity questions are rated on a scale of to 1, where = No pain and 1 = Pain as bad as you can imagine, with patients asked to rate their average, worst and least pain over the last week, and their pain right now. The IMMPACT group s recommendations for assessing clinical significance for -1 numeric pain scales are that a change of: 1% represents minimally important change 3% represents moderate clinically important change 5% represents substantial clinically important change v The interference questions are rated on a scale of to 1, where = Does not interfere and 1 = Completely interferes. The interference subscale is an average of the seven interference questions. At least 4 of 7 questions must be completed for this subscale to be valid. The IMMPACT recommendation for assessment of clinically significant change on the BPI interference scale is a change of 1 point over the average of the 7 items v Depression Anxiety Stress Scales The DASS measures the negative emotional states of depression, anxiety and stress. Due to the large number of questions in the full DASS (42 questions), the DASS21 is administered. This comprises 21 questions which are rated on a scale of to 3, where = Did not apply to me at all and 3 = Applied to me very much, or most of the time. Scores are multiplied by 2 to enable comparison with the full-scale DASS42 for which norms exist. Xxx 4

11 For each subscale (Depression, Anxiety and Stress), the 7 items are summed and then multiplied by 2. The test developers suggest that at least 6 of 7 items should be complete for each subscale to be considered valid. The following table shows the range of scores associated with severity categories for each subscale. Table 3 DASS severity ratings Depression Anxiety Stress Extremely Clinical significance on each of the DASS subscales requires a change of 5 or more points coupled with a move to a different severity category vi. Pain Catastrophising Scale The PCS measures a patient s thoughts and feelings related to their pain. This includes three subscales measuring the dimensions of Rumination, Magnification and Helplessness. The PCS comprises 13 questions (Rumination 4 items, Magnification 3 items, Helplessness 6 items) which are rated on a scale of to 4, where = Not at all and 4 = All the time. For each subscale, all items must be completed to be valid. For the total to be valid, at least 12 of 13 items must be completed. Severity bands for the PCS are: <2 = mild 2 to 3 = high >3 = severe Clinically significant change requires a change in score of 6 or more points, combined with movement to a different severity category vii. Pain Self-Efficacy Questionnaire The PSEQ measures how confident a patient is that he or she can do a range of activities despite their pain. The PSEQ Total is a sum of scores from 1 questions which are rated on a scale from = Not confident at all to 6 = Completely confident. At least 9 of 1 items must be complete for the PSEQ Total to be valid. Increases in score represent an improvement in self-efficacy. Severity bands for the PSEQ are: <2 = severe 2 to 3 = moderate 31 to 4 = mild >4 = minimal impairment Clinically significant change requires a change in score of 7 or more points, combined with movement to a different severity category viii. 5 Xxx

12 2.1.1 Change from referral to post-discharge follow-up This section describes change occurring from initial referral to a pain management service to a point three months after the patient is discharged. This allows evaluation of the changes made as a result of the treatment received, and the longevity of those changes. The average change in the outcome measures for patients who completed both a referral and postdischarge follow-up questionnaire where the follow-up questionnaire was returned within the reporting period is shown in Table 4. received referral and post-discharge follow-up questionnaires from patients. Although 14 patients across all services returned both referral and post-discharge follow-up questionnaires, not all of the assessment tools were validly completed. Please see Section 2.1 for information on valid responses for each outcome measure. Table 4 includes the number and percentage of validly completed outcomes for each assessment tool. The percentage of valid outcomes was calculated by dividing the number of valid outcomes by the number of patients (as described above). Table 4 Assessment tools Average change from referral to post-discharge follow-up Assessment tool BPI DASS PCS Score at referral Average change n= Valid outcome (number) Valid outcome (%) Score at referral Average change n=14 Valid outcome (number) Valid outcome Worst pain Least pain Average pain Pain now Interference Depression Anxiety Stress Rumination Magnification Helplessness Total PSEQ* Total * Note: For the PSEQ assessment tool, a positive movement in score is an improvement in how patients are able to perform activities despite the pain. See Appendix A for information on item completion. (%) Xxx 6

13 Figure 1 Assessment tools - Change from referral to post-discharge follow-up Perent of patients BPI - Average pain Perent of patients BPI - Worst pain -5 or less -49 to to -1 no change 1 to 29 Percent improvement or more -5 or less -49 to to -1 no change 1 to 29 Percent improvement or more As noted above in Section 2.1, a change of 1% represents minimally important change, 3% moderate clinically important change and 5% represents substantial clinically important change. Percent of patients <=-5 BPI - Interference >=5 Improvement in interference The IMMPACT recommendation for assessment of clinically significant change on the BPI interference scale is a change of 1 point over the average of the 7 items. % of patients saw improvement of 1 or more points, compared to 46.2% for all services. Scores for % of patients increased (i.e. deteriorated) by one or more points (all services = 15.4%) and % did not change (all services = 38.4%) 7 Xxx

14 DASS - Depression Perent of patients or less -14 to -1-9 to -5-4 to < to 4 5 to Improvement in depression score 15 or more According to the criteria outlined in Section 2.1, % of patients made clinically significant gains on the DASS depression subscale, % showed no change and % deteriorated. In comparison, 38.4% of patients at all services improved, 46.2% did not change and 15.4% deteriorated Percent of patients Referral Follow-up Referral Follow-up Perent of patients DASS - Anxiety % of patients made clinically significant gains on the DASS anxiety subscale, % showed no change and % deteriorated. In comparison, 3.8% of patients at all services improved, 53.8% did not change and 15.4% deteriorated. -15 or less -14 to -1-9 to -5-4 to < to 4 5 to Improvement in anxiety score 15 or more Percent of patients Referral Follow-up Referral Follow-up Xxx 8

15 Perent of patients DASS - Stress % of patients made clinically significant gains on the DASS stress subscale, % showed no change and % deteriorated. In comparison, 3.8% of patients at all services improved, 53.8% did not change and 15.4% deteriorated. -15 or less -14 to -1-9 to -5-4 to < to 4 5 to Improvement in stress score 15 or more Percent of patients Referral Follow-up Referral Follow-up Perent of patients PCS Total Perent of patients PSEQ Total -16 or less -15 to to -6-5 to < to 5 6 to 1 11 to 15 Improvement in PCS total score 16 or more -21 or less -2 to to -7-6 to < to 6 7 to to 2 Improvement in PSEQ total score 21 or more Section 2.1 guidelines for assessing clinically significant change on the PCS indicate that % of patients showed significant improvement, % did not change and % deteriorated. In comparison, 5.% of patients at all services improved, 41.7% did not change and 8.3% deteriorated. According to the criteria outlined in Section 2.1, % of patients showed clinically significant improvement on the PSEQ, % did not change and % deteriorated. In comparison, 38.5% of patients at all services improved, 58.3% did not change and 7.7% deteriorated. 9 Xxx

16 2.1.2 Change from referral to episode end As in the previous outcome, measurement of change from referral to the end of the episode (end of the final pathway) allows evaluation of the changes made as a result of the treatment provided for those patients who fail to complete the three month post-discharge follow-up. Instances where an episode has ended but the 3 month post-discharge follow-up has not yet occurred will also be included in this outcome measure. Xxx received referral and episode end questionnaires for episodes. Table 5 shows the average change for patients completing the assessment tools at referral and episode end. Responses have only been included if the same patient returned both the referral and episode end questionnaires. Table 5 Assessment tools Change from referral to episode end n= n=15 Assessment tool BPI DASS PCS Score at referral Average change Valid outcomes (number) Valid outcomes (%) Score at referral Average change Valid outcomes (number) Valid outcomes Worst pain Least pain Average pain Pain now Interference Depression Anxiety Stress Rumination Magnification Helplessness Total PSEQ* Total * Note: For the PSEQ assessment tool, a positive movement in score is an improvement in how patients are able to perform activities despite the pain. See Appendix A for information on item completion. (%) Xxx 1

17 Figure 2 Assessment tools - Change from referral to episode end Perent of patients BPI - Average pain Perent of patients BPI - Worst pain -5 or less -49 to to -1 no change 1 to 29 Percent change or more -5 or less -49 to to -1 no change 1 to 29 Percent change or more As noted above in Section 2.1, a change of 1% represents minimally important change, 3% moderate clinically important change and 5% represents substantial clinically important change. Percent of patients <=-5-4 BPI - Interference >=5 The IMMPACT recommendation for assessment of clinically significant change on the BPI interference scale is a change of 1 point over the average of the 7 items. % of patients saw improvement of 1 or more points, compared to 38.5% for all services. Scores for % of patients increased (i.e. deteriorated) by one or more points (all services = 7.7%) and % did not change (all services = 53.8%) Improvement in interference 11 Xxx

18 Perent of patients DASS - Depression or less -14 to -1-9 to -5-4 to < to 4 5 to Improvement in depression score 15 or more According to the criteria outlined in Section 2.1, % of patients made clinically significant gains on the DASS depression subscale, % showed no change and % deteriorated. In comparison, 35.7% of patients at all services improved, 35.7% did not change and 28.6% deteriorated. Percent of patients Referral Episode end Referral Episode end DASS - Anxiety Perent of patients or less -14 to -1-9 to -5-4 to < to 4 5 to Improvement in anxiety score 15 or more % of patients made clinically significant gains on the DASS anxiety subscale, % showed no change and % deteriorated. In comparison, 21.4% of patients at all services improved, 35.7% did not change and 42.9% deteriorated Percent of patients Referral Episode end Referral Episode end Xxx 12

19 DASS - Stress Perent of patients % of patients made clinically significant gains on the DASS stress subscale, % showed no change and % deteriorated. In comparison, 21.4% of patients at all services improved, 57.1% did not change and 21.4% deteriorated. -15 or less -14 to -1-9 to -5-4 to < to 4 5 to Improvement in stress score 15 or more Percent of patients Referral Episode end Referral Episode end Perent of patients PCS Total Perent of patients PSEQ Total -16 or less -15 to to -6-5 to < to 5 6 to 1 11 to 15 Improvement in PCS total score 16 or more -21 or less -2 to to -7-6 to < to 6 7 to Improvement in PSEQ total score 21 or more Section 2.1 guidelines for assessing clinically significant change on the PCS indicate that % of patients showed significant improvement, % did not change and % deteriorated. In comparison, 33.4% of patients at all services improved, 58.3% did not change and 8.3% deteriorated. According to the criteria outlined in Section 2.1, % of patients showed clinically significant improvement on the PSEQ, % did not change and % deteriorated. In comparison, 16.7% of patients at all services improved, 66.7% did not change and 16.6% deteriorated. 13 Xxx

20 2.1.3 Change from pathway start to pathway end In addition to considering the effect of the entire episode of care, the outcomes for pathways within an episode are also of interest. Xxx received pathway start and end questionnaires for pathways. The average change for patients completing the assessment tools at pathway start and pathway end is shown in Table 6. Table 6 Assessment tools Change from pathway start to pathway end Assessment tool BPI DASS PCS Score at pathway start Average change n= Valid outcomes (number) Valid outcomes (%) Score at pathway start Average change n=34 Valid outcomes (number) Valid outcomes Worst pain Least pain Average pain Pain now Interference Depression Anxiety Stress Rumination Magnification Helplessness Total PSEQ* Total * Note: For the PSEQ assessment tool, a positive movement in score is an improvement in how patients are able to perform activities despite the pain. See Appendix A for information on item completion. (%) Xxx 14

21 Figure 3 Assessment tools - Change from pathway start to pathway end Perent of patients BPI - Average pain Perent of patients BPI - Worst pain -5 or less -49 to to -1 no change 1 to 29 Percent change or more -5 or less -49 to to -1 no change 1 to 29 Percent change or more As noted above in Section 2.1, a change of 1% represents minimally important change, 3% moderate clinically important change and 5% represents substantial clinically important change. Percent of patients <=-5-4 BPI - Interference >=5 The IMMPACT recommendation for assessment of clinically significant change on the BPI interference scale is a change of 1 point over the average of the 7 items. % of patients saw improvement of 1 or more points, compared to 58.% for all services. Scores for % of patients increased (i.e. deteriorated) by one or more points (all services = 6.5%) and % did not change (all services = 35.5%) Improvement in interference 15 Xxx

22 DASS - Depression Perent of patients or less -14 to -1-9 to -5-4 to < to 4 5 to Improvement in depression score 15 or more According to the criteria outlined in Section 2.1, % of patients made clinically significant gains on the DASS depression subscale, % showed no change and % deteriorated. In comparison, 32.3% of patients at all services improved, 51.6% did not change and 16.1% deteriorated. Percent of patients Pathway start Pathway end Pathway start Pathway end DASS - Anxiety Perent of patients % of patients made clinically significant gains on the DASS anxiety subscale, % showed no change and % deteriorated. In comparison, 25.8% of patients at all services improved, 48.4% did not change and 25.8% deteriorated. -15 or less -14 to -1-9 to -5-4 to < to 4 5 to Improvement in anxiety score 15 or more Percent of patients Pathway start Pathway end Pathway start Pathway end Xxx 16

23 DASS - Stress Perent of patients % of patients made clinically significant gains on the DASS stress subscale, % showed no change and % deteriorated. In comparison, 21.9% of patients at all services improved, 59.4% did not change and 18.8% deteriorated. -15 or less -14 to -1-9 to -5-4 to < to 4 5 to 9 Improvement in stress score or more Percent of patients Pathway start Pathway end Pathway start Pathway end Perent of patients PCS Total Perent of patients PSEQ Total -16 or less -15 to to -6-5 to < to 5 6 to 1 11 to 15 Improvement in PCS total score 16 or more -21 or less -2 to to -7-6 to < to 6 7 to Improvement in PSEQ total score 21 or more Section 2.1 guidelines for assessing clinically significant change on the PCS indicate that % of patients showed significant improvement, % did not change and % deteriorated. In comparison, 24.1% of patients at all services improved, 69.% did not change and 6.9% deteriorated. According to the criteria outlined in Section 2.1, % of patients showed clinically significant improvement on the PSEQ, % did not change and % deteriorated. In comparison, 2.7% of patients at all services improved, 65.5% did not change and 13.8% deteriorated. 17 Xxx

24 The start and change scores for the assessment tools by pathway type is shown in Table 7 this allows for comparison between outcomes for different types of pathways. Data are only included where the same patient responded to questions in both the pathway start and end questionnaires. Table 7 Assessment tools Pathway start score and change from pathway start to end by pathway type n= n=33 Assessment tool BPI DASS PCS Group Individual Concurrent One-off Group Individual Concurrent One-off n= n= n= n= n=27 n= n=6 n= Start Change Start Change Start Change Start Change Start Change Start Change Start Change Start Change Worst pain u u u u Least pain u u u u Average pain u u u u Pain now u u u u Interference u u u u Depression u u u u Anxiety u u u u Stress u u u u Rumination u u u u Magnification u u u u Helplessness u u u u Total u u u u PSEQ* Total u u u u * Note: For the PSEQ assessment tool, a positive movement in score is an improvement in how patients are able to perform activities despite the pain. See Appendix A for information on item completion. Xxx 18

25 2.2 Outcome measure 2 Ability to work * Note percentages in this table will not sum to 1% as more than one work status may be chosen Table 9 shows the percentage of patients where pain affects the number of hours they are able to work or study, and the percentage of patients where pain affects the type of work they are able to do. All patients who returned a questionnaire in the reporting period are included in this table. Figure 4 shows the change in these outcomes from referral to post-discharge follow-up. The work status of patients that returned questionnaires in the reporting period is shown in Table 8. Table 8 Work status Work status (percentage*) Referral Pathway Pathway Followup Referral Pathway Pathway Follow- start end start end up Full time paid employment Part time paid employment Retired Unemployed due to pain Unemployed (not pain related) Home duties On leave from work due to pain Studying (e.g. school, uni) Voluntary work Retraining At work limited hrs &/or duties Table 9 Pain affects work or study Pain affects work or study Referral Pathway Pathway Follow- Referral Pathway Pathway Followup (percentage) start end up start end Pain affects number of hours able to work or study Pain affects type of work Xxx

26 Figure 4 Pain affects number of hours and type of work - Change through episode 1 8 Percentage of patients type of work - hours worked or studied Referral Pathway start Pathway end Follow-up Time point Xxx 2

27 2.3 Outcome measure 3 Health service use Information about health service use is collected from patients as an outcome measure. At first glance, a reduction in health service use may appear to be a positive outcome, however, increased health service use may in fact reflect more appropriate use of services, for example a patient seeking regular sessions with allied health providers to assist in managing their pain. Caution should therefore be used in interpreting the information in the following table. Table 1 shows the median number of times patients used each service in the last 3 months compared to all services for patients who returned a referral, episode end, and/or post-discharge follow-up questionnaire in the reporting period. Figure 5 shows the difference between referral and episode follow-up for health service contacts for patients. Table 1 Health service use (median number of times used in the last 3 months due to pain) Health service use Referral Episode end Follow-up Referral Episode end Follow-up General practitioner Medical specialist 1 1 Allied health professionals Hospital emergency department Admitted to hospital Diagnostic tests 1 1 Figure 5 Health service use from referral to follow-up Median number of contacts Referral Episode end Follow-up General practitioner Medical specialist Other health professionals Hospital ED Admitted to hospital Diagnostic tests 21 Xxx

28 2.4 Outcome measure 4 Pain frequency A reduction in the frequency of pain is a positive outcome for a patient. Therefore an increase in the percentage of patients for whom pain is not always present or occurs less frequently is a positive outcome. Table 11 shows the percentage of patients with each level of pain frequency over the collection points in an episode for patients who returned a referral, pathway start or end, and/or post-discharge follow-up questionnaire in the reporting period. Figure 6 shows the movement between each level of pain frequency through an episode cycle for. Table 11 Pain frequency item (percentage of patients in each group) Pain frequency Referral Pathway Pathway Follow- Referral Pathway Pathway Followstart end up start end up Always present (same intensity) Always present (varying intensity) Often present Occasionally present Rarely present Total Figure 6 Pain frequency - Change through episode Enterprise One Referral Pathway start Pathway end Follow-up Referral Pathway start Pathway end Follow-up Always present (same intensity) Often present Rarely present Always present (varying intensity) Occasionally present Xxx 22

29 2.5 Outcome measure 5 Time from referral to first contact Time from referral to first contact can indicate responsiveness of pain management services to patient needs, or alternatively, availability of resources within the pain management service. Table 12 shows the distribution of time from referral to first contact for compared to all services for episodes that start within the reporting period. The time from referral to first contact is calculated as the date the referral is received to the episode start date (i.e. patient assessment or start of treatment). Figure 7 shows the position of in comparison to other services based on the time from referral to first contact. Table 12 Time from referral to first contact Time from referral to first contact <1 month months months months >12 months Average (days) 89 na Median (days) 57 na Figure 7 Average number of days from referral to first contact (episode start) Average number of days Service 1 Service 2 Service 3 Service 4 Service 5 Service 6 Service 7 Service 8 Service 9 Service 1 Service 11 Service 12 Services ordered from lowest to highest number of days 23 Xxx

30 2.6 Outcome measure 6 Medication use Pain management services collect information about the medications their patients take and the frequency of their use. This information is provided to eppoc as three variables, describing: whether or not a patient uses opioid medication on more than two days per week the patient s daily oral morphine equivalent (using a standardised conversion table) the number of major drug groups the patient s medications fall within. The major drug groups are opioids, paracetamol, NSAIDs, antidepressants, anticonvulsants and benzodiazepines Table 13 shows medication use for patients compared to patients for all services for questionnaires returned during the reporting period. Table 13 Medication use Medication use Referral Pathway Pathway Follow- Referral Pathway Pathway Follow- start end up start end up Percent of patients using opioids >2 days/week Average daily morphine equivalent (mg) Average number of major drug groups Xxx 24

31 Section 3 - Descriptive analysis There are four levels of eppoc data items patient, episode, pathway and service events. The broad detail is found at the patient level, where the data items describe patient demographics. The items at the episode level describe the way that pain management episodes start and end and include information about the patient s pain and comorbidities at the start of the episode. The items at the pathway level categorise the type of intervention(s) the patient received, while the service event data items detail these interventions and allow evaluation of the intensity of treatment provided. This section provides an overview of the data submitted by at each level for the current reporting period. Summaries of the data for all services are included for comparative purposes. See Appendix A for information on item completion. 3.1 Profile of pain management patients The information collected about each patient includes sex, indigenous status, country of birth, whether an interpreter is required and if a patient requires help with communication. The profile of patients is different from facility to facility so this must be taken into account when interpreting results. Table 14 to Table 18 describe patients at compared to those at all services for patients active in the reporting period. Table 14 Sex Sex Male Female Total Table 15 Indigenous status Indigenous status Aboriginal but not Torres Strait Islander origin Torres Strait Islander but not Aboriginal origin 1. Both Aboriginal & Torres Strait Islander origin 4.2 Neither Aboriginal nor Torres Strait Islander origin Total Xxx

32 Table 16 Country of birth Country of birth Australia New Zealand Other Total Table 17 Interpreter required Interpreter required Yes No Total Table 18 Communication assistance Assistance required with communication Yes No Total Profile of pain management episodes An episode of care is a period of contact between a patient and a pain management service. An episode of pain management begins with the first face-to-face contact with the patient and ends when: the pain management treatment is completed (including those that will return only for periodic reviews) the patient is referred to another pain management service the patient decides not to complete treatment, or the patient dies. Episodes at are described in comparison to those at all services in Table 19 to Table 34 for active episodes in the reporting period. Table 19 Age at referral by sex Age at referral Male Female Male Female Average age (years) Median age (years) Xxx 26

33 Table 2 Age group at referral by sex - distribution Age group Male Female Male Female at referral < Total Table 21 BPI Main pain site Main pain site Head Neck Chest Back Leg Arm/shoulder Abdomen Hands Feet Pelvic and/or genital Buttock Knee Whole body Table 22 BPI Number of pain sites Number of pain sites Xxx

34 Table 23 Referral source Referral source General practitioner/nurse practitioner Specialist practitioner Other pain management service 16.6 Public hospital Private hospital. Rehabilitation provider/private insurer Other 22.8 Total Table 24 Cause of pain (precipitating event) Cause of pain Injury at home Injury at work/school Injury in another setting After surgery Motor vehicle crash Related to cancer Related to another illness No obvious cause Other Total Table 25 Cancer pain Cancer pain (is this episode of care for the management of cancer pain?) Yes 14.5 No Total Xxx 28

35 Table 26 Comorbidities Comorbidities Depression/Anxiety Osteoarthritis, degenerative arthritis High blood pressure Diabetes Heart disease Ulcer or stomach disease Rheumatoid arthritis Lung disease Stroke or neurological condition Cancer Anaemia or other blood disease Kidney disease Other medical problems * Note that the percentages in this table will not sum to 1% as patients may have more than one medical problem. Table 27 Pain duration Pain duration Less than 3 months to 12 months months to 2 years to 5 years More than 5 years Total Table 28 Episode start mode Episode start mode Single or multidisciplinary assessment Treatment start Total Xxx

36 Table 29 Episode end mode Episode end mode Pain management service treatment completed Referral to another pain management service Did not complete treatment Died 1.3 Primary treatment completed (ongoing review) Other Total Table 3 Length of episode - summary Length of episode Average length of episode (days) 75. Median length of episode (days) 44 Table 31 Length of episode - distribution Length of episode <1 month months months months months >12 months Total Table 32 Number of pathways per episode Pathways per episode or more. Total Xxx 3

37 Table 33 Service intensity - time per episode Service intensity (total hours) <5 hours hours hours hours hours Total Table 34 Service intensity number of service events per episode Service intensity (number of service events) < Total Profile of pain management pathways The pain management pathway type describes the broad type of intervention. There are four pain management pathway types: group pain management program(s) individual appointment(s) concurrent (both group and individual appointments) one-off intervention. Each episode would generally include one or more pathways, and the pathways can occur in any sequence. Information on active pathways within an episode is presented in Table 35 to Table 38. Table 35 Number of pathways by pathway type Pathway type Group Individual Concurrent One-off All pathways Xxx

38 Table 36 Average pathway length (in days) by pathway type Pathway type Group 64.9 Individual 77.7 Concurrent 13.5 One-off 15.9 Table 37 Service intensity - time per pathway Service intensity (total hours) <5 hours hours hours hours hours Total Table 38 Service intensity number of service events per pathway Service intensity (number of service events) < Total Xxx 32

39 References i Modified Brief Pain Inventory, reproduced with acknowledgement of the Pain Research Group, University of Texas, MD Anderson Cancer Centre, USA ii Lovibond, S. H. and P. F. Lovibond (1995). Manual for the Depression Anxiety Stress Scales. Sydney Australia, Psychology Foundation Monograph. iii Nicholas, M. K. (1989). Self-efficacy and chronic pain. British Psychological Society. St. Andrews, Scotland. iv Sullivan, M. J. L., et al. (1995). "The Pain Catastrophizing Scale: Development and Validation." Psychological Assessment 7(4): v Dworkin, R. H., et al. (28). "Interpreting the Clinical Importance of Treatment Outcomes in Chronic Pain Clinical Trials: IMMPACT Recommendations." The Journal of Pain 9(2): vi Johnson, J. (214, June 2). ACI Outcomes and Database Working Group. Meeting Minutes. vii Sullivan, M J L, (personal communication with Nicholas, M K, July 214) viii Nicholas, M K (personal communication, July 214) 33 Xxx

40 Appendix A Item completion Many items collected in epicentre are mandatory. This section contains item completion information on those variables that are not mandatory. Table 39 Item completion (percent complete) - patient level Data item Indigenous status 7.7 Country of birth 74.3 Table 4 Item completion (percent complete) - episode level Data item Main pain site 9.3 Cause of pain 91.6 Pain duration 92.3 Work status 99.8 Pain affects number of hours able to work/study 99.8 Pain affects type of work 99.8 Health service use - General practitioner Specialist Allied Health ED Hospital admission Diagnostic tests 87.3 Pain frequency 95.4 Xxx 34

41 Table 41 Item completion assessment tools Validity - Number of Outcome Average number Percentage of Average number Percentage of completed measure of completed validly completed of completed validly completed items items questionnaires items questionnaires required BPI Worst pain 97.3 Least pain 96.7 Average pain 96.8 Pain now 97.2 Interference 4/ DASS Depression 6/ Anxiety 6/ Stress 6/ PCS Rumination 4/ Magnification 3/ Helplessness 6/ Total 12/ PSEQ Total 9/ Xxx

42 Appendix B Relationship between levels of eppoc data Five different levels of information are collected in epicentre. These are: 1. Patient (e.g. date of birth, country of birth) 2. Episode relating to the period of care at the pain service (e.g. referral date, comorbidities). A patient may have one or more episode of care at one pain service or at different pain services. 3. Pathway the type(s) of intervention provided to the patient. These can be group pain programs, individual appointments, one off interventions, or a combination of group pain and individual appointments occurring concurrently. A patient may follow one or more pathways during an episode of care at a pain service. 4. Service event the services provided to the patient during an episode of care. 5. Questionnaire including the patient reported outcome measures e.g. DASS21, BPI. Below is an example of how these levels of information are structured: Patient Patient Episode Pathway Group program Episode 1 Episode 2 Individual appointments Service events Assessment 3 hrs Group program 2 hours Medical 1 hr Physio 1 hr Physio 1 hr Psych 1 hr Medical 1 hr Patient reported outcomes are collected at: Referral to record a baseline measure Pathway starts and ends to measure the effectiveness of interventions Reviews (if a pathway lasts longer than 3 months) to monitor change and improvement within an episode Three months after the episode ends (i.e. 3 months post discharge) to assess outcomes as a result of treatment at a service and whether improvements have been maintained. Xxx 36

43 Acknowledgements Contributions eppoc wishes to acknowledge the valuable contribution made by: Members of the National Reference Group The ACI Database and Outcomes Working Group The many staff from pain management services who have spent considerable time collecting, collating and correcting the data and without whose effort this report would not be possible The eppoc staff at the Australian Health Services Research Institute, University of Wollongong, for the collation, analysis and reporting of the data The Agency for Clinical Innovation for funding this initiative Disclaimer eppoc has made every effort to ensure that the data used in this report are accurate. Data submitted to eppoc are checked for anomalies and services are asked to re-submit data prior to the production of the eppoc report if necessary. We would advise readers to use their professional judgement in considering all information contained in this report. 37 Xxx

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