Assessing palliative care outcomes for people with motor neurone disease living at home

Abstract

A number of palliative care outcome measures are used to facilitate the provision of palliative care. This short article reports the use of one palliative care outcome measure, the Palliative care Outcome Scale, with people with motor neurone disease (MND) living at home. The outcome measure was generally viewed positively by those involved. However, problems with this scale itself point to the need for a specialized instrument to assess palliative care outcomes for people living with MND.

A research study to identify facilitators and barriers to outcome measure implementation

“…Black and Thompson (1993) found physicians generally understand the need for audit, although Nettleton and Ireland (2000) report that junior doctors had little understanding of the process itself. This suggests that facilitating outcome-measure implementation involves incorporating training not only on how to use the measure but also of wider audit and quality issues (James and Kehoe, 1999;Hughes et al, 2004b, Hughes et al, 2004c. Training may also help health professionals identify how audit may be useful in clinical practice, rather than a meaningless exercise, as some studies suggest (Nettleton and Ireland, 2000).…”

“…Direct clinical benefits of using the POS were less apparent to hospice staff, probably owing to the complex clinical needs of their patients that the POS is not sensitive enough to detect (Hughes et al, 2004c). Hospice staff noted that if the POS scores were routinely discussed clinical benefits may be apparent:…”

Perceptions of anxiety in lung cancer patients and their support network

“…Individual questions and the summary score of POS have been shown to be valid (content, consensus, face and construct validity) and reliable (internal consistency and test/re-test reliability) in a multicentre study encompassing inpatient, outpatient and community care settings [16]. POS has been adapted for local needs in a variety of settings and in this study was applied in the ambulatory out-patient setting [16,17,23,43]. POS asks patients to rate how different supportive care issues have affected them over the previous 3 days.…”

Experience of Services as a Key Outcome in Amyotrophic Lateral Sclerosis (ALS) Care

“…68 The use of generic palliative care outcome tools themselves may not necessarily be sensitive to the needs of specific groups including people with ALS. 69 Amyotrophic lateral sclerosis is always terminal and in comparison to other conditions (including cancer), there is more certainty regarding the period of time to death. Hence, it is conceivable that the domains of satisfaction with services for ALS patients may differ from the domains of satisfaction with services for other groups who live with terminal illness.…”