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Prescribing assistive devices to people with MS: how do the views of patients and professionals compare?

Dr Brian Buckley, Cochrane Fellow & Researcher in Primary Care
Department of General Practice, Clinical Sciences Institute, National University of Ireland, Galway.

Way Ahead 2008;12(2):5-7

Objective

To compare the perspectives of health professionals and of patients with multiple sclerosis (MS) regarding factors which affect the provision and use of assistive devices (ADs).

Background

Under-use and abandonment of Ads

Effective provision and use of assistive devices including aids for mobility, everyday tasks and personal care, can maintain or improve functional capacities of people with disabilities. Under-use, misuse or abandonment of such devices is a significant problem which constitutes both a failure in provision of care and a waste of resources.

The literature identifies a multitude of factors which can affect whether or not a patient fully adopts an AD and these can vary from person to person as well as between device types. Practical factors such as poor design quality and safety as well as psychosocial factors may contribute to the success or otherwise of AD prescription, adoption and use. The suitability of an AD with regards to a patient's personality, lifestyle and ability is of importance, as is its effect on the patient's image and self-esteem. Cultural norms and prejudices can affect device use by causing concerns about self-image or physical appearance while using a device, the social acceptability of the device, and whether it will bring unwanted attention [1-5].

Patient involvement in the selection of devices is highlighted as being of particular importance, with abandonment occurring less frequently when users believe their opinions have been taken into consideration [1,3,4,6,7]. Furthermore, the literature highlights that a lack of training or information regarding the effective use of ADs is associated with abandonment [1,4,7].

Methods

A questionnaire survey was conducted of community-based AD users with MS and primary care healthcare practitioners involved in AD prescription and supply.

Subjects and procedures

The patient group was accessed through the regional branch of MS Ireland, whose community workers maintain contact with 195 people with MS in County Donegal. Questionnaires were distributed to patients in their homes and returned directly to the researcher in prepaid envelopes. The inclusion criteria were a diagnosis of MS and possession of at least one of the AD types considered by the study.

Questionnaires were sent to healthcare professionals most regularly involved in the prescription and supply of ADs to people with MS: every physiotherapist, physiotherapy assistant, occupational therapist and specialist continence nurse in the county, and 20 of a county total of 54 public health nurses or health visitors (PHNs).

Questionnaire

The questions asked of the patient and health care professional groups corresponded closely. Whilst the patient questionnaire sought views on personal experience of AD provision and use, the health care professional questionnaire sought views on how the respondents felt they would react to AD provision and use if they were patients.

ADs included in the survey

Appropriate and recent sources of data relating to AD use by people with MS were identified to help determine six generic AD types most commonly used by people with MS for consideration in this study [9,10]:

  • weelchairs
  • walking sticks and crutches
  • walking aids
  • specialised beds and mattresses
  • incontinence aids
  • bathing aids

Factors affecting AD use or abandonment

Factors associated with AD adoption or abandonment which the survey sought to capture both in terms of patient and professional perspectives, were determined in a purposive review of literature as being those which commonly affect AD use and abandonment. These included:

  • effectiveness of the AD
  • reliability of the AD, feeling of security in use
  • comfort
  • effect on self-image - and how quickly this improves
  • effect on how AD user is seen by family/colleagues - and how quickly this improves
  • improved opportunities to access activities or amenities offered by AD use
  • unwanted attention - does the AD use affect ability to 'fit in'?
  • provision of training or information relating to effective AD use
  • patient participation in selection of the AD

Results and discussion

Questionnaires were returned by 76 patients with MS (73.7% female; mean age 49) and 49 professionals as follows: 7 OTs,15 Physiotherapists, 10 Physiotherapy Assistants, 14 PHNs and 5 Continence Resource Nurses. Concordance between patient and professional perceptions was generally good in relation to most issues including comfort, effectiveness, safety, reliability and limitations of ADs, the effect of AD use on self-image and the perception and treatment of AD users by others. Differences between patient and professional responses were found to be statistically significant in only a handful of areas. Where divergence of opinion occurred it did so most often in relation to walking aids and incontinence aids.

However, it was in relation to two specific issues rather than AD types that responses were most consistently divergent: the participation of patients in AD selection prior to prescription; and the provision of training or information relating to effective AD use.

Patient participation in AD selection

Respondents were asked whether patients' opinions were sought when ADs were selected. The difference between patient and professional responses were found to be significant for all AD types except for wheelchairs, with practitioner estimation of patient participation in the selection process significantly higher than that of patients.

When responses relating to a total of 229 prescriptions of all AD types were combined, 78% of professional responses reported patients were sufficiently involved in selection and 62% of patient responses agreed. However, 19.2% of patient responses indicated their opinions were 'not sought enough' and a further 18.8% that their opinions were 'not sought at all'.

The literature indicates that patient involvement in the selection of ADs can prevent selection of ADs unsuited to the patient's circumstances or abilities, can maximise the feeling of ownership of the AD and can minimise discontinuance of AD use [1,3,4,6,7]. However, this study supports indications in the literature that patient participation is often sub-optimal. For every AD type the striking finding was the number of patients who reported that their opinions were not sought 'at all'.

It is unclear whether patients' opinions were not sufficiently sought or whether opinions were sought, but at times when patients could not participate effectively. The literature indicates that the acquisition of new ADs can be stressful for patients, especially so for those with progressive conditions because a new AD can represent disease progression and further loss of ability or independence. It has been suggested that patients can find AD selection overwhelming, precluding effective participation. Whatever the case, a perceived or actual lack of participation in AD selection amongst patients may result in similar poor outcomes.

Provision of information or training about effective AD use

Respondents were asked whether patients received enough information or training about using the AD effectively. Using Chi-Squared tests, the difference between patient and practitioner responses were significant for every AD type, with practitioner estimation of the extent of information and training provided higher than that of patients.

When responses relating to all ADs are combined, 81.8% of practitioner responses indicate that patients receive 'enough' training and information as opposed to 47.8% of patient responses. 52.2% of patient responses indicated that they received either 'not enough' or 'none'.

That 39.6% of patient responses across all ADs report that no training or information at all was received is perhaps the most worrying finding. However, as with perceived involvement in AD selection, patient recollection may have influenced these responses.

The importance of ensuring that patients can use ADs effectively and safely is well established. However, this research supports indications in the literature that patients do not always receive adequate or effective training or information about effective AD use.

Conclusion

Whatever the case, a perceived or actual lack of participation in AD selection, and provision of information on AD use may result in reduced acceptance of ADs and under-use or abandonment. Further research and consultation with other disciplines might be of use in identifying strategies for greater involvement of patients in AD selection and improved provision of training and information.

References

  1. Hocking C.
    Function or feelings: factors in abandonment of assistive devices.
    Technol Disabil 1999; 11:3-11.
  2. Batavia M, Batavia IA, Friedmans R.
    Changing chairs: anticipating problems in prescribing wheelchairs.
    Disabil and Rehabil 2001;23(12):539-548.
  3. Kittel A, Di Marcio A, Stewart H.
    Factors influencing the decision to abandon manual wheelchairs for three individuals with a spinal cord injury.
    Disabil Rehabil 2002;24(1/2/3):106-114.
  4. McMillen Ann-Mari, Soderberg S.
    Disabled persons' experience of dependence on assistive devices.
    Scand J Occup Ther 2002; 9(4):176-183.
  5. Koch T, Kralik D, Eastwood S, Schofield A.
    Breaking the silence: women living with multiple sclerosis and urinary incontinence.
    Int J of Nurs Prac 2001;7(1):16-23.
  6. Pape T. L-B, Kim J, Weiner B.
    The shaping of individual meanings assigned to assistive technology: a review of personal factors.
    Disabil Rehabil 2002;24(13):5-20
  7. RiemerReiss ML.
    Factors associated with assistive technology discontinuance among individuals with disabilities.
    J Rehabil 2000; 66(3):44-50
  8. Parette HP, Van Biervliet, Holbrook MC.
    Technological needs of visually impaired and blind persons an Arkansas.
    J Visual impair Blin 1990;84(10):534-538.
  9. Galligan K, Mulvany F.
    National Physical and Sensory Disability Database: a preliminary analysis.
    Dublin: Health Research Board; 2004.
  10. Finlayson M, Guglielmello L, Liefer K.
    Describing and predicting the possession of assistive devices among persons with multiple sclerosis.
    Am J Occup Ther 2000; 55(5):545-551.

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