Patients’ Expectations Before Initiation of Intrathecal Baclofen Treatment: A Longitudinal Study with 1-Year Follow-Up


  • Stina Gunnarsson Department of Rehabilitation Medicine and Department of Health, Medicine and Caring Sciences, Linköping University
  • Dag Lemming Pain and Rehabilitation Centre and Department of Health, Medicine and Caring Sciences, Linköping University
  • Siw Alehagen Division of Nursing Sciences and Reproductive Health and Department of Health, Medicine and Caring Sciences, Linköping University, Linköping
  • Tommy Bergenheim Department of Clinical Sciences, Neurosciences, Umeå University, Umeå, Sweden
  • Björn Gerdle Pain and Rehabilitation Centre and Department of Health, Medicine and Caring Sciences, Linköping University
  • Kersti Samuelsson Department of Rehabilitation Medicine and Department of Health, Medicine and Caring Sciences, Linköping University



activity, disability, expectations, intrathecal baclofen treatment, proxy, satisfaction, spasticity


Objective: To investigate patients’ expectations, met/unmet expectations and satisfaction with intrathecal baclofen treatment in relation to effect on spasticity, pain intensity, sleep quality, occupational performance, well-being and self-efficacy.
Design: A prospective longitudinal study with follow-up at 1 year.
Patients: Consecutive patients, age ≥ 18 years with a disabling spasticity of cerebral or spinal origin selected for intrathecal baclofen treatment at 2 university hospitals in Sweden were included. From August 2016 to June 2019, 35 patients began intrathecal baclofen treatment; 29 patients were included and completed the study.
Methods: Baseline and 1-year follow-up included assessment of spasticity by physiotherapists, a semi-structured interview regarding occupational performance using the Canadian Occupational Performance Measure and a questionnaire.
Results: Overall satisfaction with treatment and satisfaction with occupational performance were reported as moderate. Important variables that explained satisfaction with occupational performance were improvements in performance, expectations and performance before treatment. Patients had higher expectations compared with the 1-year outcomes regarding occupational performance, spasticity, pain intensity and sleep quality, although improvements were reported.
Conclusion: A thorough discussion of goal setting with intrathecal baclofen treatment before implantation is necessary to give patients individual and realistic expectations.

Spasticity is a common complication for patients with various neurological conditions, such as spinal cord injury, acquired brain injury, cerebral palsy and multiple sclerosis. For patients with disabling spasticity, intrathecal baclofen is an effective and satisfactory treatment. Dissatisfaction with treatment has been described, but has not been thoroughly evaluated. Therefore, this study examined patients’ expectations of effects on occupational performance, spasticity, pain intensity and sleep quality. Patients were followed-up after 1 year on the treatment, and results and satisfaction were reported. Patients improved, but not as much as they had expected. As a group, they were moderately satisfied, and important variables for satisfaction were found to be improvements in performance, expectations and initial performance. These results highlight the need to discuss patients’ expectations and goals with this treatment even more thoroughly and to address realistic expectations.


Download data is not yet available.


Ward AB, Aguilar M, De Beyl Z, Gedin S, Kanovsky P, Molteni F, et al. Use of botulinum toxin type A in management of adult spasticity. A European consensus statement. Eura Medicophys 2004; 40: 83-84.

Ertzgaard P, Anhammer M, Forsmark A. Regional disparities in botulinum toxin A (BoNT-A) therapy for spasticity in Sweden: budgetary consequences of closing the estimated treatment gap. Acta Neurol Scand 2017; 135: 366-372. DOI:

Field-Fote EC, Furbish CL, Tripp NE, Zanca J, Dyson-Hudson T, Kirshblum S, et al. Characterizing the experience of spasticity after spinal cord injury: a national survey project of the Spinal Cord Injury Model Systems centers. Arch Phys Med Rehab 2022; 103: 764-772. DOI:

Gunnarsson S, Samuelsson K. Patient experiences with intrathecal baclofen as a treatment for spasticity - a pilot study. Disabil Rehabil 2015; 37: 834-841. DOI:

Saulino M, Ivanhoe CB, McGuire JR, Ridley B, Shilt JS, Boster AL. Best practices for intrathecal baclofen therapy: patient selection. Neuromodulation 2016; 19: 607-615. DOI:

Krach LE, Nettleton A, Klempka B. Satisfaction of individuals treated long-term with continuous infusion of intrathecal baclofen by implanted programmable pump. Pediatr Rehabil 2006; 9: 210-218. DOI:

Natale M, D'Oria S, Nero VV, Squillante E, Gentile M, Rotondo M. Long-term effects of intrathecal baclofen in multiple sclerosis. Clin Neurol Neurosur 2016; 143: 121-125. DOI:

Plassat R, Perrouin Verbe B, Menei P, Menegalli D, Mathe JF, Richard I. Treatment of spasticity with intrathecal baclofen administration: long-term follow-up, review of 40 patients. Spinal Cord 2004; 42: 686-693. DOI:

Sammaraiee Y, Yardley M, Keenan L, Buchanan K, Stevenson V, Farrell R. Intrathecal baclofen for multiple sclerosis related spasticity: a twenty year experience. Mult Scler Relat Disord 2019; 27:95-100. DOI:

Biering-Soerensen B, Stevenson V, Bensmail D, Grabljevec K, Martínez Moreno M, Pucks-Faes E, et al. European expert consensus on improving patient selection for the management of disabling spasticity with intrathecal baclofen and/or botulinum toxin type A. J Rehabil Med 2022; 54: jrm00241. DOI:

Boster AL, Bennett SE, Bilsky GS, Gudesblatt M, Koelbel SF, McManus M, et al. Best practices for intrathecal baclofen therapy: screening test. Neuromodulation 2016; 19: 616-622. DOI:

Boster AL, Adair RL, Gooch JL, Nelson ME, Toomer A, Urquidez J, et al. Best practices for intrathecal baclofen therapy: dosing and long-term management. Neuromodulation 2016; 19: 623-631. DOI:

Draulans N, Vermeersch K, Degraeuwe B, Meurrens T, Peers K, Nuttin B. Intrathecal baclofen in multiple sclerosis and spinal cord injury: complications and long-term dosage evolution. Clin Rehabil 2013; 27:1137-1143. DOI:

Mathur SN, Chu SK, McCormick Z, Chang Chien GC, Marciniak CM. Long-term intrathecal baclofen: outcomes after more than 10 years of treatment. PM R 2014; 6: 506-513. DOI:

Bowling A, Rowe G, Lambert N, Waddington M, Mahtani KR, Kenten C, et al. The measurement of patients' expectations for health care: a review and psychometric testing of a measure of patients' expectations. Health Technol Assess 2012; 16: i-xii, 1-509. DOI:

El-Haddad C, Hegazi I, Hu W. Understanding patient expectations of health care: a qualitative study. J Patient Exp 2020; 7: 1724-1731. DOI:

World Medical Association. Medical Association Declaration of Helsinki - ethical principles for medical research involving human subjects. 1964. [cited 2022 May 5]. Available from:

Ansari NN, Naghdi S, Arab TK, Jalaie S. The interrater and intrarater reliability of the Modified Ashworth Scale in the assessment of muscle spasticity: limb and muscle group effect. NeuroRehabilitation 2008; 23: 231-237. DOI:

Bjelland I, Dahl AA, Haug TT, Neckelmann D. The validity of the Hospital Anxiety and Depression Scale. An updated literature review. J Psychosom Res 2002; 52: 69-77. DOI:

Brooks R. EuroQol: the current state of play. Health Policy 1996; 37: 53-72. DOI:

Carswell A, McColl MA, Baptiste S, Law M, Polatajko H, Pollock N. The Canadian Occupational Performance Measure: a research and clinical literature review. Canadian journal of occupational therapy Rev Can Ergother 2004; 71: 210-222. DOI:

Dworkin RH, Turk DC, Farrar JT, Haythornthwaite JA, Jensen MP, Katz NP, et al. Core outcome measures for chronic pain clinical trials: IMMPACT recommendations. Pain 2005; 113: 9-19. DOI:

Farrar JT, Troxel AB, Stott C, Duncombe P, Jensen MP. Validity, reliability, and clinical importance of change in a 0-10 numeric rating scale measure of spasticity: a post hoc analysis of a randomized, double-blind, placebo-controlled trial. Clin Ther 2008; 30: 974-985. DOI:

Farrar JT, Young JP, Jr., LaMoreaux L, Werth JL, Poole RM. Clinical importance of changes in chronic pain intensity measured on an 11-point numerical pain rating scale. Pain 2001; 94: 149-158. DOI:

Hurst H, Bolton J. Assessing the clinical significance of change scores recorded on subjective outcome measures. J Manipulative Physiol Ther 2004; 27: 26-35. DOI:

Kjeken I, Slatkowsky-Christensen B, Kvien TK, Uhlig T. Norwegian version of the Canadian Occupational Performance Measure in patients with hand osteoarthritis: validity, responsiveness, and feasibility. Arthritis Rheum 2004; 51: 709-715. DOI:

Love J, Moore CD, Hensing G. Validation of the Swedish translation of the General Self-Efficacy scale. Qual Life Res 2012; 21: 1249-1253. DOI:

Meseguer-Henarejos AB, Sánchez-Meca J, López-Pina JA, Carles-Hernández R. Inter- and intra-rater reliability of the Modified Ashworth Scale: a systematic review and meta-analysis. Eur J Phys Rehabil Med 2018; 54: 576-590. DOI:

Quinn TJ, Langhorne P, Stott DJ. Barthel index for stroke trials: development, properties, and application. Stroke 2011; 42: 1146-1151. DOI:

Law M, Baptiste S, Carswell A, McColl M, Polatajko H, Pollock N. Canadian Occupational Performance Measure. 3rd edn. Ottawa: CAOT Publications ACE; 1998.

Schwarzer R, Jerusalem, M. Generalized Self-Efficacy scale. In: Weinman J, Wright S, Johnston M, editors. Measures in health psychology: a user's portfolio. Causal and control beliefs. Windsor, UK: NFER-NELSON; 1995: 35-37. DOI:

Eriksson L. Multi- and megavariate data analysis: basic principles and applications. 3rd rev. edn. Malmö, Sweden MKS Umetrics; 2013.

Akoglu H. User's guide to correlation coefficients. Turk J Emerg Med 2018; 18: 91-93. DOI:

Gunnarsson S, Alehagen S, Lemming D, Ertzgaard P, Ghaderi Berntsson S, Samuelsson K. Experiences from intrathecal baclofen treatment based on medical records and patient- and proxy-reported outcome: a multicentre study. Disabil Rehabil 2019; 41: 1037-1043. DOI:

Mannion AF, Kämpfen S, Munzinger U, Kramers-de Quervain I. The role of patient expectations in predicting outcome after total knee arthroplasty. Arthritis Res Ther 2009; 11: R139. DOI:

Robinson ME, Brown JL, George SZ, Edwards PS, Atchison JW, Hirsh AT, et al. Multidimensional success criteria and expectations for treatment of chronic pain: the patient perspective. Pain Med 2005; 6: 336-345. DOI:

Duncan PW, Lai SM, Tyler D, Perera S, Reker DM, Studenski S. Evaluation of proxy responses to the Stroke Impact Scale. Stroke 2002; 33: 2593-2599. DOI:

Sneeuw KC, Aaronson NK, Osoba D, Muller MJ, Hsu MA, Yung WK, et al. The use of significant others as proxy raters of the quality of life of patients with brain cancer. Med Care 1997; 35: 490-506. DOI:

Gunnarsson S, Lemming D, Alehagen S, Berntsson S, Ertzgaard P, Samuelsson K. Dosing patterns in treatment of disabling spasticity with intrathecal baclofen. Rehabil Nurs 2021; 46: 315-322. DOI:

Heetla HW, Staal MJ, Kliphuis C, Laar T. The incidence and management of tolerance in intrathecal baclofen therapy. Spinal Cord 2009; 47: 751-756. DOI:

Additional Files



How to Cite

Gunnarsson, S., Lemming, D. ., Alehagen, S., Bergenheim, T., Gerdle, B., & Samuelsson, K. (2023). Patients’ Expectations Before Initiation of Intrathecal Baclofen Treatment: A Longitudinal Study with 1-Year Follow-Up. Journal of Rehabilitation Medicine, 55, jrm00371.



Original Report


Most read articles by the same author(s)

1 2 > >>