A Guide to the Rehabilitation in Växjö Pain Rehabilitation Program Postadress: Box 1223, 351 12 VÄXJÖ Besöksadress: J F Liedholms väg 14, Växjö E-post: rehabkliniken@ltkronoberg.se Telefon: 0470-59 22 50 Telefax: 0470-59 22 05 Revised & collaborated with the management team Senaste rev: 2013-11-06
Table of contents Pain Management... 3 Personal Approach and Patient Perspective... 3 The Section s Role and Place in the Chain of Care... 3 Referrals... 3 Purpose... 4 Target group... 4 Inclusion Criteria for Patient Admitted to the Pain Rehabilitation Program... 4 Exclusion Criteria... 4 Discharge/Discontinuance/Discontinuance of the Rehabilitation Program... 5 Flow Descriptions... 5 Pain Assessment... 5 Goals... 5 Basic Course in Pain Management... 5 Pain Management... 6 Goals... 6 The Program s Background... 6 Rehabilitation Program... 7 The Professional Team... 7 Follow-up... 9 Outcome Measure... 9 Development... 10 Results... 10 2
Pain Management Today there is a united knowledge, both international and national, when analyzing as well as treating a large amount of patients with chronic non-malignant pain. As pain is only one part of the problem an interdisciplinary approach, with professionals from many different disciplines with the same coherent goals, is used. The rehabilitation clinic s pain management program in Växjö relies on an interdisciplinary team of clinicians who specialize in treating chronic pain patients. The staff holds high competence, education, and many years of experiences working with patients with different pain conditions. Personal Approach and Patient Perspective Up-to-date modern research has led us to enhance our knowledge about the mechanics behind chronic pain. Today, we have realized that pain that are only based on psychological factors, so called psychological pain, is very unusual. Chronic pain, as we know it today, has both a psychological and a physiological explanation. Therefore, it is imperative that the patient s experience is taken seriously, even though there might not be any clear signs or reasons. The staff working at the rehabilitation clinic/pain rehab in Växjö bases their treatments by evaluating the patients from a biological, psychological, and social approach and from existential factors in different stages. All elements need to be considered as the patients long-lasting pain might always be part of them and it is our mission to provide the patients with lifelong skills that will improve their overall life in every possible way. Our approach and belief in the way we perceive the patients is respect and that each and everyone is capable of taking responsibility of their own situations, and makes their own decisions. We consider all the elements and factors, as mentioned above, when we approach our participants and base all of the information into our assessments, treatments, and guidelines for the rehabilitation program. The patients then are able to receive self-managing skills through the rehabilitation program and it allows them to address all aspects of their individual life that may be affected by chronic pain. The Section s Role and Place in the Chain of Care Patients with chronic pain go through a medical evaluation at the primary care clinic and, when necessary, at a specialized facility (for example, orthopedically or rheumatologic facilities) to diagnose, treat underlying diseases, and to rule out any malignant possibilities. The rehabilitation treatments are mainly given at the primary care clinic in collaboration with the physical and occupational therapists, and/or with psychosocial resources. When possible, the participants are also offered multi disciplinary rehabilitation at the primary care unit. When the rehabilitation goals at the primary care unit are not enough to reach the patients potential, then a referral can be made for the specialized pain rehabilitation program at the rehabilitation clinic. When there is uncertainty of the patient s diagnosis, then a referral to the rehabilitation clinic/pain rehab, for a second opinion from a medical doctor, is recommended. Referrals Referrals are both accepted from external and internal facilities, but most of them come from the primary care clinics. The patients could also get their own referrals. The Medical doctor is responsible for the evaluation of the referrals. The assessment and prioritization of the patient s admission to the program are done according to specific criteria s. 3
If the referral is accepted, the clinic that sent the referral and the patient will both be notified either when the basic course approximately begins, or if the patient is coming in for a second opinion. An appointment and a questionnaire are mailed to the patient two to three weeks before the planned treatments. The questionnaire should be filled out and mailed back before the course starts, regardless if joining the basic course or coming in for second opinions. The goal for the waiting time for treatments is to maintain the warranty of care. If a referral is rejected the patient will receive a written explanation by mail and are encouraged to contact their primary medical doctor for further information. They will also receive additional suggestion of optional treatments, if possible. Purpose The main purpose for the assessments and rehabilitation at the pain rehab clinic is to achieve the best possible functional outcome for the patient s own needs, and potentials. Also, to strive to increase their optimal level of activity and participation in the patient s different life situations. Target group The target group for the pain rehabilitation program at the clinic is the patients with chronic nonmalignant pain. Long-term pain may cause suffering as well as limiting their activities of daily living. The program seeks out these patients that are at risk or has already started to noticing interference in their daily activities. Inclusion Criteria for Patient Admitted to the Pain Rehabilitation Program - Mainly between 18-67 years of age - Living predominantly in Kronoberg s county - Be fully medically evaluated (as much as possible) - Be cardiovascular stable - Able to comprehend and speak some Swedish - When individualized rehabilitation treatments have been given at the primary care clinic and the interdisciplinary rehabilitation no longer benefit the patient - Able to participate during the day: 3hours/day 3days/week during 8 weeks - Be motivated to behavorial adjustments - Set up realistic goals in accordance to the rehabilitation program - Be able to participate in group-based treatments - Able to learn skills in groups - Lasting rehabilitation improvements after the treatments Exclusion Criteria - Serious acute psychological disease, emergency crisis, or suicidal - Apparent drug, narcotic, or alcohol addiction - If adequate treatments been given in every possible way and there are no lasting results or improvements then the participant in RK are most likely not admitted - Overwhelmingly socioeconomic difficulties - Difficulties implementing skills learned at the rehabilitation due to other reasons then medically. For example: language barriers, social factors, lack of motivation, ongoing health insurance procedures. - Ongoing medical assessments - Primary symptoms of pain is based on osteoarthritis or rheumatoid arthritis 4
Discharge/Discontinuance/Discontinuance of the Rehabilitation Program Requested by the patient: - All treatments are voluntarily. Before being discharged it is important to assess the reason why the patient requested a discharge. To be able to correct the problems and to avoid future misunderstandings. Requested by the team: The patient can be discharged against his/her will, due to these circumstances: - Drug, narcotic, or alcohol addiction - The patient is not actively participating in forming or planning the ongoing individualized rehabilitation plan - When the number of absence is so frequent that the participant are not able to retain the importance of the program s subject matter. - The patient is so disrupted in the class (for example unstable behavioral condition) that this affect the other patient s rehabilitation. Flow Descriptions Referral Basic Course 4 days Assessment medical doctor, psychologist, physical and occupational therapists Program 2-4 days/week, 8 weeks Follow-up 3 months Follow-up day Follow-up 1 year Letter/ phonecall Pain Assessment Pain Management Pain Assessment Goals 1. Pain assessment consists of a medical assessment and an evaluation for future complications, as there might be disabling components for patient s living with pain. 2. To increase the knowledge about the patient s pain condition, and the consequences it brings to the patients, the primary medical doctors, and eventually their family members. 3. Structure a plan and give recommendations for continuation of assessments, treatments, rehabilitations, and pain management. Basic Course in Pain Management The patients start their pain rehabilitation program with 4 days of a basic class in pain and stress management. The rehabilitation requires the patients to change their mindset and involves a process where the patients start to set their own rehabilitation goals. The basic class is 5-6 hours/day during four days (Monday-Thursday). The class consists of maximal 12 people. Sometimes they also have volunteer health care staff. The participant in the class tries different pain and stress reducing management skills. For example: mind-body awareness, mindfulness, gait training with walking sticks, aerobic conditioning, and physical rehabilitation classes. We insist that the patients are active and participate fully in the program. The theoretical part of the program includes basic foundation courses containing information about pain, stress, and mental health. The program also includes a review of how to find balance in daily life activities and how to set own goals. The program does not provide individual treatments and 5
assessments. After the basic course the patient can then decide if he/she is interested in continuing the pain rehabilitation program at the rehabilitation clinic. The purpose of the basic course is to provide the patient with basic knowledge for chronic pain, strategies for pain management, and to try different techniques and skills that the program offers. After the course the patient can then decide to continue the program or choose to discontinue the program. At the moment we are developing our introductory basic course. In the future, we will be able to use these results collected from the basic course and incorporate that into our assessments, when deciding if the patient will benefit from the pain rehabilitation program or not. Before making a decision for the continued rehabilitation program a rehabilitation and pain assessment is made. The rehabilitation assessment includes a meeting with the medical doctor, psychologist, physical and occupational therapists. After the patient has given their permission, the professional staff can begin going through the patient s medical records to create an overall medical history, previous assessments, treatments, and outcomes. Additional documents for the evaluations include the patient s questionnaire, and the standardized self-report outcome measures. The assessment is focused on a medical and functional pain evaluation. Also, to map out the consequences that may emerge due to the pain in the patient s physical, socially, psychological, and work/education life. At the team conference the assessments and results are summarized. A decision is made based on the results and the patient will either be offered a place in the rehabilitation program or if another form of treatments should be recommended. When making the decision to admit a patient to the program 3 important factors are considered: patient s motivation, the rehabilitation goals, and the possibility to complete the program successfully. Pain Management Goals 1. Increase pain management skills and strategies for dealing with the consequences when living with pain on a daily basis 2. Increase perceived view on one s health, both physiological and psychological 3. Increase participation in different daily activities. For example, work/study, recreational and home activities 4. Decrease hospital readmissions 5. Increase acceptance and willingness of feeling pain and to continue participating in activity. 6. Increase the outcome to return to work The Program s Background The pain rehabilitation treatments are designed to map out different reasons to how pain contribute to decreased functional abilities, how the pain influences the patients quality of life, and how to help the patient overcome those problems. Different ways to solve and managing pain will have different outcome. Some people are able to overcome and adjust to new circumstances in a way where pain do not prevent the patient s overall quality of life. Others have a hard time adjusting which create obstacles in certain areas in their daily life. 6
Research studies shows that patients with chronic pain benefits from group rehabilitation. This means that the participants can learn from each other. We can take advantage of different views to reach alternative interpretation of different situations and at the same time the group can illustrate many ways to react and communicate with each other. Meeting others in the same circumstances create a way to identify, acknowledge, and normalize ones individual situation and reactions. We work with an interdisciplinary team, with same goals and coordinated strategies. The team includes medical doctors, occupational and physical therapists, rehabilitation assistant, psychologists, and psychiatric nurses. Our approach is based on a cognitive-behavioral therapeutic approach, with the main goal focusing on how the patient is functioning, here and now, in their daily routines. Rehabilitation Program The rehabilitation program is available during the day, Monday-Friday, 3-6 hours/day with a structured schedule 28 days at the clinic and additional 12 days at home during 8 weeks. For the patients with decreased functional abilities then there is potential to structure a program less intensive. The program is adjusted to the patient s needs and benefits, with minimum 2-3 hours/day, 16 days at the clinic and additional 8 days at home during 8 weeks. On the off day the patient work on individual exercises at home. It is expected of the patient to incorporate all the rehabilitation skills learned during the course when continuing their treatments at home. During the first weeks, the participants together with some of the team members work on an individualized rehabilitation plan, in accordance to the goals set during the basic course. The rehabilitation plan is modified to fit the patient s needs, potentials, and the rehabilitations resources. It includes long term goals and short term goals for the overall rehabilitation period. The programs emphasize to increase knowledge, provide self-management skills, and point out the patient s strengths, sound health, and positive resources. The program provides the patient with individualized programs, including physical, practical, and psychological exercises, practiced together with the group. It emphasizes behavioral components, on-off cycle with activity and relaxation, and a balance between different activities and rest periods. For the ultimate success of the program it is imperative for the patient s close families to participate. The family is invited by the patient (if the patient wishes) to a family group meeting to receive information and to discuss the best way to help the patient in their rehabilitation process. A recommendation can be made for psychological, social, and/or self care management skills if necessary. The rehabilitation program includes both a theoretical and practical lessons. The theoretical lessons includes: pain and stress theories, sleep, diet/health, anatomy, motivation, and goals. The practical lesson includes: mind-body awareness, ergonomics, EMG, ACT, mindfulness, and time management skills. We are currently building our schedule and the number of hours and days might change. The Professional Team Medical Doctor: have the most comprehensive medical responsibility for the patients during their time at the rehabilitation period, perform pain assessment, and select the optimal medicine for the patients. Be able to explain the reason for pain, inform general knowledge about the pain mechanism, and future 7
consequences when living with chronic pain. Also, handle questions about medical insurance plans, issuing of certifications; and in collaboration with others in the team, work towards a plan for work, education, or activities. Physical Therapist: coaching the participants in pain management through theory lessons and body awareness exercises. Introductory lessons in physical exercises and cognitive rehabilitation therapy. The purpose of the lessons is for the patients to discover, understand, and strengthen the patient s own inner resources. The physical therapists focus on treatments that involve movements to encourage well being and health. The physical and occupational therapists also work on body awareness in the patients daily activities, to be able to use the knowledge in everyday life. Occupational Therapist: coaching the participants in pain management through strategies, how to prioritize and plan for daily activities (with personal care, recreational, and at work/school). This is accomplished by recognizing their own inner resources and to find a balance between different activities, and find a balance between activity and relaxation. Through body awareness works the occupational and physical therapists together to implement knowledge to the patient s daily life. The patient can participate by, for example, visiting the work place in preparation to return to work. Psychiatric nurse: introduce and guide the patients in ACT/mindfulness. It includes both a theoretical and practical components that are taught both individually and together with the group. Direct a conversation to reflect with the patient individually and within the group. Also, guide support groups when patient s reactions bring on emergency crisis, give pain/stress reducing tactile therapy, and NADA. Psychologist: work from a cognitive-behavioral treatment approach and knowledge based theoretical approach to be able to understand pain. The psychologist helps the patient to acknowledge dysfunctional strategies and patterns that contributes to a decreased quality of life. The main focus is to improve the patient s behavioral pattern by offering psychology lessons, exposure, and skill training, and to enhance the good qualities the patients already have. Other areas that are emphasized are the patient s motivation in working actively towards their goals, and the advantages/obstacles that present itself for a successful change. Rehab assistant: support the patient by getting help deciding on better life style choices. This may include physical exercises, and information on diet to gain an understanding on how that can improve one s health. When necessary, give individual support to help with routines, balance, meal-planning, and implementing variations to one s life. Also, give pain/stress reducing treatments through Tactile Stimulations. The rehab assistant work administrative and is responsible for data entry using NRS (National registry for pain rehabilitation), updating the course schedule, and to book local appointments. Coach A Coach helps the patients with their goals, to build a rehabilitation plan, to make sure the goals are followed, and coordinates between the team members. There are 3 coach meetings and one special meeting with some of the other team members present to discuss goals. The coach is always present and supports the patient during the rehabilitation meetings. 8
Follow-up The follow-up period lasts 3 months after the program is finished. During this period it is recommended for the patients to continue to actively practice all the techniques and strategies they have learned during the course. All the exercises and individual treatments are coordinated with the initial rehabilitation goals written in the rehabilitation plan. During the follow-up period another meeting is planned with personal from the social insurance office, employment office, employer, workers compensation, primary medical doctor, and the patient s close family (if he/she wishes). At the meeting a discussion about the continuation of the plan involving, sick-leave, work, vocational training, education etc. are brought up. Follow-up day The follow-up period ends after 3 months. Then the group is gathered together, for a day, to review previous course subjects. A rehabilitation outcome measure is done by filling out a questionnaire using a national quality registry. The coach also meets with each and every patient to touch base on their progress with their rehabilitation plan and accomplished goals. Also to create a plan for future goals after the rehabilitation period is over. After the follow-up period a summery and a referral is sent to the patient s primary doctor, which now is responsible for future follow-ups and treatments. The contact with the pain rehabilitation clinic is discontinued. Follow-up after a year We call the patient after a year for additional follow-up and to send out a new questionnaire to be filled out. The questionnaire has the same format as the one the patient filled out when they finished their program. To be able to follow the progress of the program and to notify any variations between patients and rehabilitation centers. Outcome Measure Perceived satisfaction assessment questionnaire regarding the rehabilitation course is given to the patient at the end of the course. It is filled out and the patient remains anonymous. The patient s view points are very valuable for future improvements for the program s development. When joining the rehabilitation program there are six standardized goal-oriented outcomes measure registered with the patient at admissions, discharge, and one year later at follow-up. The results are collected to a data based registry. Outcome data are then fed back into the programmers and the team in order to improve their process characteristics. Each unit can compare its results with a national registry. This is central component of most quality assurance systems that constantly want to improve their rehabilitation program and goals. At the moment we are developing our outcome measures and how the results can be used to improve our operation. We are also working on analyzing our target groups and how to form the program better. Standardized Outcome Measure 1. The multidimensional pain inventory. (NRS; MPI) 2. Perceived health (NRS; SF-36, EQ5D, HAD) 3. Perceived participation and activation (NRS;SF-36, MPI, EQ-5D, CPAQ) 4. Amount of medical visits within the year (NRS; questions) 5. Acceptance (NRS; CPAQ, Tampa=villighet att känna smärta och engagemang i aktivitet) 6. Return to work, vocational work or studies (NRS; questions) 9
The patients that attended the rehabilitation program 2012, 68% of the participants visited the medical doctor 4 times or more. Considering the amount of months since the patient group last was active, the median time is 16, 2012. MPI: MPI scale measures psychological and behavioral components with various dimensions involved in the experience of chronic pain. Followed are the results for each area. On the scale pain severity 54 % improved, 15% got worse, affective distress 33% improved, 25% got worse, interference with life 28% improved, 4% got worse, life control 47% improved, 27% got worse, and activity index 37% improved, 3% got worse since filling out the NRS at the beginning of the start of the program. EQ5D: The result of the EQ5D-index, measuring physiological and psychosocial function of the patient group, are: 14% no change, 53% got worse, 33% improved in comparison to the beginning of the program. SF-36: A health survey for quality of life. The results for the patient group are: the summary on all the physical function scale 60% improve, 40% got worse. The summary on all the mental health scale 53% improved, 47% got worse. HAD: HAD is a self-screening questionnaire for anxiety/regret, and depression/sadness. Followed are the results: 68% fall within definite depression, 18% fall within possible depression, 14% no signs of depression at the beginning of the program. The end results for depression/sadness are: 43% no change, 10% got worse, and 47% improved. The results for anxiety/regret are: 58% definite anxiety, 22% possible anxiety, 20% no signs of anxiety at the beginning of the program. The end results for anxiety/regret are: 53% no change, 19% got worse and 28% improved. Development Our rehabilitation programs are part of a national quality registry for pain rehabilitation (NRS). Outcome data is collected from this registry to monitor effective outcomes of a healthcare process. Data collected is used to improve their process and is done continuously (on a small scale) and data from the program are sent annually for a structural analysis. The established changes are discussed at a planned meeting and a verbal decision is made by program supervisors together with the management team. Annually a thorough analysis of the pain rehabilitation program is done. The changes in the program are based on the results collected from: outcome measures, research, different opinions from other stake holders, economical, and other strategically decisions made on a section and organization level. Results Demographic Description Below, is a summarized description of a demographic overview for patients registered 2012, and discharged from the program 2012. Data was collected at the assessment of the rehabilitation program, at the end of the class, and at the one-year follow-up. The results have been divided into areas of different demographics variables (age, gender, % born in Sweden, number of months since last employment, number of month since initial pain started). The median age, according to NRS, was 44 10
years old. The number of women 77%, number of Swedish-born that went through rehabilitation 58%, number of patients with a high school diploma or a higher education 82%. The median time, in months, since the patient was last employed was 16. Number of months since initial pain started was 140 for the group. For questions about the content of the guide, the pain rehabilitation program, please contact the rehabilitation clinic reception at the front desk: 0470-592250. Upon request, in addition to this program guide, additional information regarding the guide to the rehabilitation clinic in Växjö can be provided for you. For more overall information about the clinic; the organization, mission statement, criteria s, work effect etc. contact the front desk at the clinic. 11