Julie Hearn

Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliative Care Core Audit Project Advisory Group.

OBJECTIVES: To develop an outcome measure for patients with advanced cancer and their families which would cover more than either physical symptoms or quality of life related questions. To validate the measure in various specialist and non-specialist palliative care settings throughout the UK. DESIGN: A systematic literature review of measures appropriate for use in palliative care settings was conducted. In conjunction with a multidisciplinary project advisory group, questions were chosen for inclusion into the scale based on whether they measured aspects of physical, psychological, or spiritual domains pertinent to palliative care, and whether similar items had shown to be valid as part of another measure. A staff completed version was developed to facilitate data collection on all patients throughout their care, and a patient completed version was designed to enable the patient to contribute to the assessment of their outcomes when possible. A full validation study was conducted to evaluate construct validity, internal consistency, responsiveness to change over time, and test-retest reliability. Assessments were timed. SETTING: Eight centres in England and Scotland providing palliative care, including inpatient care, outpatient care, day care, home care, and primary care. PATIENTS: A total of 450 patients entered care during the study period. Staff collected data routinely on patients in care long enough to be assessed (n = 337). Of these, 262 were eligible for patient participation; 148 (33%) went on to complete a questionnaire. MAIN MEASURES: The Palliative Care Outcome Scale (POS), the European Organisation for Research on Cancer Treatment, and the Support Team Assessment Schedule. RESULTS: The POS consists of two almost identical measures, one of which is completed by staff, the other by patients. Agreement between staff and patient ratings was found to be acceptable for eight out of 10 items at the first assessment. The measure demonstrated construct validity (Spearman rho = 0.43 to 0.80). Test/re-test reliability was acceptable for seven items. Internal consistency was good (Cronbachs alpha = 0.65 (patients), 0.70 (staff)). Change over time was shown, but did not reach statistical significance. The questionnaire did not take more than 10 minutes to complete by staff or patients. CONCLUSION: The POS has acceptable validity and reliability. It can be used to assess prospectively palliative care for patients with advanced cancer.

A multicenter evaluation of cancer pain control by Palliative Care Teams

Data on pain prevalence and severity were collected prospectively from advanced cancer patients as an integral part of two service evaluations. Six multidisciplinary palliative care teams working in Ireland formed the basis of one study and five teams based in the South of England were included in the second. A total of 695 cancer patients were referred and died in care in a minimum 6-month data collection period. Of these, 70% (486/695) were experiencing pain at referral to the services. After 2 weeks, there was a significant reduction (P < 0.0001) in the levels of pain experienced by patients, and no patient had overwhelming pain. The data emphasize that pain prevalence in advanced cancer patients cared for in the community is as high as that observed in other settings. Multidisciplinary palliative care teams are shown here to be effective in alleviating pain.

Cancer Pain: Cancer pain epidemiology: a systematic review

Introduction Cancer pain afflicts millions of people worldwide every year, yet it can be well or completely controlled in 80%–90% of patients (1–3). Exactly how many of the estimated 6.6 million people worldwide who died from cancer last year (4) experienced pain at any one time is difficult to ascertain. The reasons for this are discussed below. Nevertheless, in spite of the major advances in pain control over the last 15 years, cancer-related pain continues to be a major international public health problem (5–21). Although pain is recognized as an extremely common symptom in patients with cancer, studies to date show a wide variation in the reported prevalence (22–24). Three main factors influence this: Difficulty in making generalizations to different health care settings or different patient groups because of variation in the design of prevalence studies (25,26) Inherent difficulties in assessing the presence or absence of pain, particularly because no one “gold standard” assessment system exists, exacerbated by attempts to grade the severity of cancer pain in a variety of ways Difficulty in defining the type of pain (27), because pain associated with cancer has features of both chronic and acute pain and can be either the direct or indirect result of the cancer (28,29) Pain and cancer are not synonymous (30). Evaluation of pain in advanced cancer is primarily clinical and is based on pattern recognition. Attention to detail is necessary to prevent inappropriate treatment (31). Comprehensive pain assessment is important, but initial treatment with analgesics should not be withheld until these have been carried out (30).