LUNS - Longer-term Unmet Needs after Stroke.
Stroke patients may experience a range of longer-term problems affecting physical, social and mental well-being. There is currently no available measure that provides a ‘good fit’ across all of these outcome domains in the special context of longer-term stroke care. Through literature reviews, preliminary psychometric testing, expert peer review and consumer feedback we have developed a patient-centred, clinical monitoring tool to measure longer-term unmet needs after stroke (LUNS). In a pilot study, the 21-item LUNS was shown to have adequate postal reliability and validity against the Nottingham extended activities of daily living scale (NEADL) and the hospital anxiety and depression scale (HADS). Qualitative semi-structured interviews were then used to further refine five items and add an extra item.
The reliability, validity and acceptability of the resulting 22-item LUNS questionnaire has now been evaluated in a large multi-centre study.
The study recruited patients in two phases in approximately 40 stroke units across England.
First Phase (n=350): Patients who had suffered a new stroke event, did not have cognitive impairment or aphasia, were able to read and understand English, likely to be discharged to their own homes, and able to provide written informed consent, were recruited to the study. An assessment pack containing the LUNS, General Health Questionnaire-12 (GHQ-12), the Frenchay Activities Index and the Short Form-12 (v2) (SF-12) was posted to the participating patients between three and six months post-stroke. A second assessment pack containing LUNS and SF-12 was administered approximately one week after completion of the first. The psychometric properties of LUNS were assessed and shown to be acceptable in this group of patients before proceeding to the second phase.
Second phase (n=500): Study procedures and entry criteria were as above with the exception that the following patients were also included and proxy responses were allowed: patients who had cognitive impairment or aphasia, could not read and understand English but had a carer who could read and understand English, or lacked capacity to provide informed consent but had a carer who could provide a consultee declaration.
Recruitment for Phase 1 took place from December 2008 to May 2009 and for Phase 2 from February 2010 to January 2011. In total 850 patients were recruited; 651 with normal cognition and communication and English speaking and 199 with impaired cognition or communication or non-English speaking.
The average number of unmet needs was 4 and the most commonly reported unmet need was for more information about stroke / secondary prevention.
Acceptability of LUNS
- Average time taken to complete LUNS was 6 minutes (pilot study).
- Postal return rate for the questionnaire packs was 69%.
- When the questionnaire packs were returned, 85% of LUNS questionnaires were fully completed and 3.5% of LUNS questions were not completed. This was comparable to the other questionnaires in the packs.
Validity of LUNS
- Face and content validity: The development of LUNS based on literature reviews, involvement of stroke patients and peer review has ensured face and content validity.
- Concurrent validity: Identifying unmet need on LUNS items was associated with poorer health status measured by the other questionnaires (relating to mood, extended activities of daily living and quality of life).
Test-retest reliability of LUNS
- In those patients returning both questionnaire packs and reporting no change in health status between the two packs:
- % agreement of individual LUNS questions between the two packs was 78-99%.
- 14 questions were classed as having a moderate agreement (kappa statistic between 0.41-0.6) and 8 questions a good agreement (kappa statistic between 0.61-0.8).
- Test-retest reliability of LUNS compared favourably to that of SF12.
For more information on the results of the LUNS study, see the presentation from the UK Stroke Forum 2011 (International Journal of Stroke, 2011, 6 (suppl 2), 3) and publication in Clinical Rehabilitation 2013, 27, 1020-1028 [full text].
LUNS is acceptable to stroke patients and has good validity and test-retest reliability, therefore providing a simple and reliable method for identifying longer term unmet needs after stroke.
LUNS can be used for identifying the longer term unmet needs for an individual stroke patient during a post stroke review, as recommended by the National Stroke Strategy (QM14) and Accelerating Stroke Improvement Programme (ASI 8).
LUNS can also be used to provide a survey of the longer term unmet needs of stroke patients within a service, to evaluate how well a service is meeting the needs of its stroke patients (National Stroke Strategy QM13). LUNS has not yet been evaluated for its ability to measure service improvements (sensitivity to change).