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Rehabilitation strategies to improve physical functioning in patients with musculoskeletal diseases Giesen, F.J. van der

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Rehabilitation strategies to improve physical functioning in patients with musculoskeletal diseases

Giesen, F.J. van der

Citation

Giesen, F. J. van der. (2010, June 1). Rehabilitation strategies to improve physical functioning in patients with musculoskeletal diseases. Retrieved from https://hdl.handle.net/1887/15578

Version: Corrected Publisher’s Version

License: Licence agreement concerning inclusion of doctoral thesis in the Institutional Repository of the University of Leiden

Downloaded from: https://hdl.handle.net/1887/15578

Note: To cite this publication please use the final published version (if applicable).

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Summary and Discussion

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Summary

Musculoskeletal diseases affect many people in European communities, with rheumatoid arthritis (RA) and osteoarthritis (OA) being the most common conditions. In general, the impact of musculoskeletal diseases on individuals’ lives including physical functioning is substantial, despite the growing number of effective drugs for specific rheumatic conditions. This thesis describes interventions aiming to reduce disability, with the example of interventions targeted on hand function disability as well as their evaluation, and the implementation of evidence-based interventions in daily practice, with the example of physical activity and exercise interventions for patients with RA.

Chapter 1 provides an introduction to functioning, disability and rehabilitation in musculoskeletal diseases, with a focus on rehabilitation of hand function disability and the implementation of evidence based rehabilitation strategies in daily care.

It is concluded that specific knowledge regarding the problems that individual patients with specific hand conditions experience is lacking. In addition, the evidence regarding splinting interventions for swan neck deformities in patients with RA, as well as insights in a multidisciplinary approach to hand function problems in patients with musculoskletal diseases are scarce. Moreover, it is concluded that there is a need for more comprehensive evaluations regarding the implementation of evidence based exercise interventions for patients with RA.

After the general introduction in the first chapter, this thesis is divided into 2 parts:

Part 1 investigates interventions aiming to reduce hand function disability in musculoskeletal conditions and their evaluation.

Part 2 investigates the implementation of evidence based interventions aiming at reducing disability in patients with rheumatic diseases into practice.

Part 1 Interventions aiming at reducing hand function disability

Chapter 2 describes the characteristics, management strategies and outcomes of patients with rheumatic diseases and complex hand function problems referred to a multidisciplinary hand clinic comprising of a rheumatologist, a rehabilitation specialist, an orthopedic surgeon, an occupational therapist and a physical therapist. In this study, patients referred to the multidisciplinary hand clinic were assessed at baseline and after 3 months of followup. The most frequently mentioned impairments and limitations of the 69 patients enrolled in the study pertained to grip ability, pain, grip strength and shaking hands. Fifty-six patients received a treatment advice, concerning conservative therapy (n=39), surgery (n=12), or a combination of both (n=5). In 38 (68%) out of 56 patients the advised treatment was executed, 33 of whom completed the followup assessment. On average, patients improved significantly, with an increase in grip strength and self reported hand function.

The aim of the randomized crossover trial in Chapter 3 was to compare the effectiveness and acceptability of silver ring splints (SRS) and commercial prefabricated thermoplastic splints (PTS) in treating swan neck deformities in patients with RA. According to 2 different sequences, 50 patients used both splints for 4 weeks, with a washout period of 2 weeks. Afterward, patients used the preferred splint for another 12 weeks. There were

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no significant differences in hand function improvement, adherence or patient satisfaction between the 2 splints. Twenty-four patients preferred the SRS and 21 the PTS, whereas 2 patients choose neither. A comparison after the followup period of 12 weeks yielded similar clinical outcomes, with the exception of a significantly higher score in 3 items of satisfaction in the SRS group. The results of this study suggest that in patients with RA and a mobile swan neck deformity, SRS and PTS are equally effective and acceptable.

In Chapter 4, data from the study described in Chapter 3 was used to identify hand function problems and reasons to choose a specific finger splint in patients with RA and swan neck deformities. It was observed that patients with RA and swan neck deformities experience problems with flexion initiation, painful PIP joint hyperextension, cosmetics, small grip activities, big grip activities, activities involving the application of pressure, and comprehensive hand function activities. Reasons for preferring or not preferring a specific type of finger splint included: effect, ease of use, cosmetics, comfort, side effects, losing the splint unintended and change of fit. Apart from ‘losing the splint unintended’ and a negative appreciation of the aspect ‘cosmetics’, which appeared to be more frequently mentioned in connection with the SRS, no clear pattern of positive or negative appreciation of either type of splint could be distinguished. It was concluded that with the prescription of finger splints, a substantial number of potentially positive and negative consequences of their use need to be taken into account.

Chapter 5 reports on the results of a study to investigate the responsiveness of the Michigan Hand Outcomes Questionnaire (MHQ) in patients with RA who were treated in the before mentioned multidisciplinary hand clinic. In this study the MHQ was compared to commonly used outcome measures of hand function.

Twenty-eight patients with problems in hand function due to RA were assessed before and 3 months after conservative and/or surgical treatment.

The outcomes of the assessed measures of responsiveness; Standardized Response Mean, effect size and responsiveness ratio, were -0.81, -0.62 and 1.29 respectively. In addition, significant associations were found between the changes of the MHQ total score and the patient’s rating of subjective change in hand function (ρ =0.49) and the change score of the AIMS hand function scale (ρ =-0.43). It was concluded that the MHQ proved to be a responsive measure of hand function in patients with RA who were treated in connection with a multidisciplinary hand clinic.

Part 2 Implementation of evidence based interventions

Chapter 6 describes the evaluation of the implementation of an intensive group exercise program in patients with RA. In 4 regions in the Netherlands the implementation was initiated on a limited scale. Evaluation, using the RE-AIM-model included: Reach, the proportion of the target population participating in the program; Efficacy, the effectiveness in real life (muscle strength, aerobic capacity, functional ability and psychological functioning);

Adoption, the adoption of the program by stakeholders; Implementation, the quality of the intervention (audits); and Maintenance, the stakeholders’ willingness to continue the program in the future.

Twenty-five physical therapists from 14 practices were trained to provide the program.

In total, 150 patients with RA were recruited (by estimation 2% of the target population). From the 81 patients who had finished the 12-month intervention and were available for followup directly after the intervention, 62 patients provided clinical data. Muscle strength improved

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significantly, whereas aerobic capacity, functional ability, psychological functioning and disease activity did not change. All 9 informed local patient organizations facilitated patient recruitment, and 38 out of 51 rheumatologists involved referred 1 or more patients. All 10 approached health insurance companies funded the program for 12 months. The quality audits showed sufficient quality in 9 out of 12 practices. All providers of the program were willing to provide the program in the future whereas future reimbursement by health insurance companies remained unclear. It was concluded that the implementation of an intensive exercise program for patients with RA on a limited scale can be considered successful regarding its reach, adoption and implementation, but that the limited effectiveness and the limited data regarding maintenance warrant additional research.

In Chapter 7 the results of a case study investigating the potential barriers and facilitators regarding a future implementation of an internet-based physical activity intervention for patients with RA are described. Identification of these barriers and facilitators took place by using the principles of the RE-AIM model. This model comprises of 5 dimensions; reach, efficacy, adoption, implementation and maintenance. However, since in this study actual implementation of the internet-based intervention did not take place yet, the dimensions efficacy and maintenance were left aside. The results of the study showed that on a setting level, a future implementation of the internet-based physical activity intervention seemed feasible. Rheumatologists and concerning rheumatology centers were willing to co- operate. However on a individual level, the number of eligible patients to participate in the implementation of the intervention was limited. It appeared that the incorporation of a bicycle ergometer in the internet-based physical activity intervention limited the implementation on a larger scale considerably, because both patients’ as well as the health insurance companies’ willingness to pay for the bicycle ergometer was low. Moreover the prerequisite to give up currently used physical therapy in favor of the internet-based intervention was found to be an important barrier for patients.

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General Discussion

Disability is a major consequence of musculoskeletal conditions. Rehabilitative strategies aim to decrease disability by maximizing physical, psychological and social functioning. This thesis describes 2 elements of rehabilitative strategies in musculoskeletal conditions, in particular rheumatoid arthritis (RA):

1. interventions aimed to reduce disability, with the example of interventions targeted at hand function disability as well as their evaluation; and

2. the implementation of evidence based interventions in daily practice, with the example of physical activity and exercise interventions in patients with RA.

1. Interventions aiming to reduce hand function disability Interventions aiming to improve hand function

Depending on the nature and extent of hand function problems, various strategies aiming to improve hand function can be used in daily care. Interventions can be categorized into conservative1-13 or surgical treatment modalities14-22. For a comprehensive approach towards hand function problems23-28, care can be provided by a multidisciplinary team, involving experts in conservative and surgical treatment.

Chapter 2 of this thesis shows that with such a team approach, patients with various musculoskeletal diseases and hand function problems improved significantly, with an overall increase in grip strength and self reported hand function. However, the observational study design that was employed does not allow for conclusions on the effectiveness of multidisciplinary team care in comparison with usual care. Moreover, it should be noted that despite the favorable outcomes in this observational study, not every patient may need an advice by all team members. More care providers may not always mean better care: some patients prefer to put their trust in one or two health professionals rather than an extensive team29. Therefore, the development of methods to select patients for a multidisciplinary approach is warranted.

Apart from the direct positive effects on patient outcomes, a multidisciplinary approach might positively influence the knowledge of care providers referring to multidisciplinary teams.

If professionals receive feedback about their referrals, they learn about the possibilities that other professionals have in treating specific problems. This may result in the ability to consult these professionals more efficiently outside the multidisciplinary environment.

It might be valuable to investigate whether this additional effect of multidisciplinary care exists, because it can contribute to the cost-effective use of multidisciplinary team care and the efficient consultation of other professionals.

Surgery was an important treatment modality in the multidisciplinary approach described in Chapter 2. Evidence regarding surgical interventions for the rheumatoid hand is scarce14-22. For example, the number of studies regarding the evaluation of MCP joint replacement surgery is small. The available studies mostly involved a retrospective design19-21, although more recent studies show prospective approaches14,15.

A striking outcome of this study was that a considerable proportion of patients did not follow the team’s advice on a surgical intervention. This observation may be related to the complexity of the hand function problems presented to the team and the elaborate discussions on the potential benefits and negative effects of surgery with the patients. Our findings underline that decisions on hand surgery are very individual, with the patients’ expectations on outcomes being very important in selecting a specific surgical intervention. Apart from

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the patient’s and the surgeon’s expectations on the outcomes of surgery, expectations of other health care providers’ may play a role as well. In previous studies on expectations of surgeons and rheumatologists regarding outcomes of surgery for the rheumatic hand30,31, it was found that rheumatologists consider hand surgery significantly less effective than hand surgeons. In addition, rheumatologists and hand surgeons were found to disagree on the indications for hand surgery in patients with RA. A possible explanation for the observed discrepancies may be that rheumatologists and hand surgeons have minimal interdisciplinary training, and in some settings communication may be infrequent. It is to be expected that more research into the outcomes of hand surgery in patients with rheumatic diseases, and a better dissemination of its results among health care providers as well as patients, may contribute to a greater concordance of expectations.

With respect to conservative treatment, there is limited evidence regarding frequently used single modality interventions for the rheumatoid hand, including splinting1,7,9,10,13,32-35, exercises5,6,11,36-38 and joint protection2-4,8.

With regard to splinting, Chapters 3 and 4 of this thesis show that silver ring splints (SRS) and prefabricated thermoplastic finger splints (PTS) appear to be equally effective in RA patients with swan neck deformities. In addition, the numbers of patients preferring SRS or PTS are almost evenly distributed. With respect to reasons why patients with swan neck deformities prefer a specific finger splint over another, no clear pattern of positive or negative appreciation of either SRS or PTS could be distinguished. Exceptions were ‘losing the splint unintended’ and a negative appreciation of ‘cosmetics’, which appeared to be more commonly mentioned with SRS in patients preferring PTS than with PTS in patients preferring SRS.

These insights may contribute to a more targeted prescription of fingers splints in patients with RA and swan neck deformities, where it is known that a considerable proportion of patients are not using their prescribed orthoses35. Now that in our study the effectiveness of various splint types was found to be similar, starting with the least expensive finger splint, for exemple a prefabricated thermoplastic splint, is likely be the optimal strategy.

In case the splint is found to be effective and the patient wants to continue its use, the advantages and disadvantages of the various types of splints which were identified in this study, should be discussed with the patient. The patient’s final choice may depend on the patient’s preferences as well as the associated costs. It is illustrated, how advanced knowledge on patients’ preferences can be used to improve the process of the prescription of orthoses in patients with musculoskeletal conditions. For a further dissemination of this knowledge, it should find its way into evidence based guidelines.

Evaluation of hand function problems

In rehabilitation it is important to evaluate the outcomes of an intervention, to be able to adjust treatment goals and treatment strategies when necessary. To determine what to measure, disease specific ICF Core Sets, in which domains relevant to patients with a specific condition are described, can be helpful39-44.

In this thesis, a wide variety of hand function related concepts relevant to patients with musculoskeletal conditions was identified. In Chapter 2 and Chapter 4, the ICF Core Set for RA39 showed not to be sufficiently detailed to describe all concepts relevant to patients with RA and hand function disability. This finding may warrant the development of a general hand function specific ICF Core Set. Moreover, the complexity of hand function problems as described in this thesis, introduces a methodological issue in research in this patient group. In many patients, multiple impairments in hand functions and structures, and ensuing problems with activities and participation, are present. The large variety in

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problems in hand function, as well as in the individual’s needs and expectations, make it very difficult to give an appropriate description of the patient group and a rationale for the interventions proposed to individual patients. Comparisons among groups of patients with complex hand function problems in musculoskeletal diseases are therefore difficult to make. Even if a study is restricted to only one diagnosis, it is a challenge to recruit homogeneous populations of patients with similar impairments and limitations in hand function. To facilitate research, more standardization in describing hand function problems is needed.

Ideally, a measurement instrument for hand function disability should address the whole spectrum of hand and arm function, and should represent all relevant domains (ICF chapters ‘Body functions and Body structures’ and ‘Activities and Participation’) affected by hand function problems45. Currently, there are various examples of outcome measures for upper extremity surgery46-48, such as the Patient Outcomes Of Surgery (POS)-Hand/

Arm questionnaire47 and the DASH questionnaire (Disabilities of the Arm, Shoulder and Hand)49. Frequently used instruments in musculoskeletal diseases do however not cover all domains in which patients may experience problems50,51. In general the Participation domain is under represented. Examples of specific activities, not covered by the existing and most commonly used instruments, are ‘‘operating (mobile) phones’’ and ‘‘caring for (grand) children’’. In addition, personal and contextual factors are not often taken into account, although their impact of functioning may be considerable. This is also one of the findings of the study described in Chapter 2 where it was observed that commonly used measurement instruments on the level of daily activities like the Health Assessment Questionnaire (HAQ) and the hand function dimension of the Arthritis Impact Measurement Scales do not cover the activity ‘shaking hands’, which proved to be a frequently mentioned problem in our study population of patients with rheumatic diseases and hand function problems.

A measurement instrument with a more comprehensive focus than daily activities alone, the Michigan Hand Outcomes Questionnaire (MHQ), was studied in Chapter 5. It is a multidimensional hand function specific questionnaire, which proved to be the most responsive in comparison with other measures of hand function used in multidisciplinary hand care in patients with RA. However, it remains to be established how this instrument performs in other specific musculoskeletal conditions. Moreover, as was previously mentioned, patients may experience a wide variety of problems. This would probably warrant an individual approach towards evaluation rather than the application of instruments that were found valid and responsive on the group level. With an individual approach, the patient’s specific problems are identified and evaluated at followup. Such instruments, but with a generic focus on functioning, are already used in rheumatology52 with the McMaster Toronto Arthritis patient preference questionnaire (MACTAR) as an example. However, methodological problems with an individual approach include the observation that individual problems may vary with time, e.g. with seasonal fluctuations, and the occurrence of new functional problems. This hampers the long-term followup of the problems that were originally identified.

A major challenge for the future is adapting outcome assessments to match the actual patients’ needs, as the nature of disability is considerably influenced by development in the medical treatment. For example, it has been shown that over the past decades the long-term disability as measured with the HAQ in patients with RA has reduced with the introduction of Disease Modifying Anti Rheumatic Drug (DMARD) based treatment strategies53. In addition, recent insights in Disease Activity Score driven treatment strategies with TNF- alpha blocking agents54,55 have improved the functional ability of patients with RA56,57. This

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development raises the question whether the currently available measures of functioning are appropriate to identify the more subtle impairments that may nevertheless seriously hamper an individual’s activities or societal participation, including paid and unpaid work and leisure activities.

2. Implementation of evidence based interventions

Chapter 6 and Chapter 7 of this thesis show that it is important to comprehensively evaluate implementation projects aiming to improve health care. Only with knowledge about the impact on the patients’ health in real life, the value of an intervention in daily practice can be considered. Implementation research is a relatively new area, and to date it is not clear what the optimal evaluation methods are58.

The RE-AIM model (Reach, Efficacy, Adoption, Implementation and maintenance) used in this thesis, was found to be suitable for measuring the public health impact of exercise programs for patients with RA, and for identifying the facilitators and barriers for implementation. The definitions of the 5 domains within this model leave ample room for investigators to adapt them for their specific needs and purposes and to choose specific instruments for measuring outcomes in these domains. However, this approach may also have limitations. Because of the wide variety of possible measurement instruments, comparisons between the results of various implementation projects might be hampered.

To facilitate the comparison between implementation projects, the development of specific sets of outcome measures for every domain of the RE-AIM model is advocated.

When evaluating implementation processes, the challenge in comparing effectiveness between trial conditions and real life situations should be noted. These comparisons can be hampered by differences in measurement instruments used in these 2 situations. With implementation research, patients must be evaluated as part of daily care, with the use of measurement instruments which are, for exemple, recommended in clinical practice guidelines. Measurement instruments used in clinical trials may therefore be of little use in evaluating individual outcomes in real life, because they were developed to measure on the population level. In addition, some instruments used in clinical trials are not commonly available in clinical practice, for example for financial reasons (for exemple, an isokinetic dynamometer to measure muscle strength) or for practical reasons (for exemple, the usage of an instrument requires specific training).

Another challenge in the evaluation of implementation projects is the data collection.

Clinicians will have to put in extra effort to make sure that data recorded in daily care is made available for central storage in a database for further analysis. This collection of data should not stop with a one-time evaluation, but should include ongoing evaluation with regular intervals. This registration can be part of a system aiming to improve and maintain health care quality, such as the institution of physical therapy performance indicators59 or the delivery of data to registries collecting outcome data in joint prostheses60-63. The usage of electronic patient records may enhance health care providers’ compliance with the registry of data in daily clinical practice.

Design of exercise programs

In this thesis, the implementation of a program aimed to promote physical activity at a moderate intensity level and the implementation of a supervised exercise program at a vigorous intensity level were evaluated.

Attaining and maintaining a sufficient amount of physical activity at a moderate intensity level, is a challenge to many patients with musculoskeletal conditions. In the implementation

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study of an internet-based physical activity intervention, it was found that many patients with RA were interested to participate in such a program. Moreover, rheumatologists were willing to refer, and health insurance companies were, in part, willing to reimburse the program. However, the RA patients’ willingness to substitute regular physical therapy with a home-based physical activity program was limited. Their hesitation was both related to the bond with their treating physical therapist, and to the financial consequences; conventional physical therapy being fully reimbursed and the internet-based program only in part being reimbursed.

Regarding the implementation of physical activity on a vigorous intensity level, the patients’ reasons for not starting with the Rheumatoid Arthritis Patients In Training (RAPIT) program, the reasons for ending the program prematurely and the overall relatively low attendance rate, suggest that engagement in intensive exercise therapy twice a week may not be an attainable goal for many RA patients. The same conclusion was drawn from the long-term followup of the RAPIT program64. After the exercise program had ended, the majority of the patients continued exercising at a lower frequency than the 2 times offered during the original RAPIT study64. These findings are also in line with data from the general Dutch population, where only 16% is engaged in intensive exercise for 20 minutes on at least 3 days a week65.

The very low proportion of patients with RA participating in a supervised intensive exercise program with a frequency of two times a week, suggests that the attainment of physical activity at a moderate intensity level, incorporated in daily activities, could be a more realistic target of future interventions. For patients with RA, this would have the advantage that patients with cardiovascular comorbidity, as well as patients with weight bearing joint prosthesis, could also engage in this type of exercise. Currently, research into the health benefits of moderate intensive exercise programs as compared to vigorous intensity programs in patients with RA is lacking.

The 2 implementation studies described in this thesis have shown that with both interventions, only a part of the total population of RA patients was reached. Apart from the question on the optimal intensity, more research is needed into which components of the program and which mode of delivery are most effective, and for which patients.

The patients’ internal motivation is an important determinant for starting and maintaining physical activity, which is currently not explicitly accounted for in the development of physical activity programs66,67. Motivational interviewing68,69 is a promising method to be employed in physical activity interventions for patients with musculoskeletal conditions. Moreover, the role of alternatives for face-to-face contacts and supervision, such as remote coaching by means of video systems, should be further examined.

To conclude with, this thesis shows the importance of the patient’s role in rehabilitation for musculoskeletal conditions. With respect to interventions, it was demonstrated in patients with hand function disability that both a multidisciplinary approach and a single treatment modality, for exemple finger splints for swan neck deformities in RA, can improve hand function. However, the diversity in problems experienced by patients, even in a population selected on homogeneous characteristics, emphasizes that a tailor made approach is needed to meet the patient’s specific needs and expectations. This diversity in problems also highlights the need for a comprehensive focus on outcome measurement. In addition, it was found that patients’ preferences have a large impact on their choices for a specific treatment strategy, which underlines the need for health professionals to support them appropriately in making well-informed decisions.

Regarding the implementation of evidence based interventions, it was demonstrated

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that despite optimal implementation among health care providers, the success of an implementation project depends largely on the number of patients becoming familiar with an intervention, then deciding to participate and then continueing their participation. An ever ongoing challenge for health care providers is therefore to carefully identify the patients’

needs and preferences, before developing new health care interventions.

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