Reliability and validity of the Thai translation (Thai PPS Adult Suandok) of the Palliative Performance Scale (PPSv2).

PURPOSE: the Thai PPS Adult Suandok tool was translated from the Palliative Performance Scale (PPSv2) and had been used in Chiang Mai, Thailand for several years. AIM: to test the reliability and validity of the Thai translation of PPSv2. DESIGN: a set of 22 palliative cases were used to determine a PPS score on Time-1, and repeated two weeks later as Time-2. A survey questionnaire was also completed for qualitative analysis. PARTICIPANTS: a total of 70 nurses and physicians from Maharaj Nakorn Hospital in Chiang Mai participated. RESULTS: The Time-1 intraclass correlation coefficient (ICC) for absolute agreement is 0.911 (95% CI 0.86-0.96) and for consistency is 0.92 (95% CI 0.87-0.96). The Time-2 ICC for agreement is 0.905 (95% CI 0.85-0.95) and for consistency is 0.912 (95% CI 0.86-0.96). These findings indicate good agreement among participants and also were somewhat higher in the Time-2 re-test phase. Cohen's kappa score is 0.55, demonstrating a moderate agreement. Thematic analysis from the surveys showed that 91% felt PPS to be a valuable clinical tool overall, with it being 'very useful' or 'useful' in several areas, including care planning (78% and 20%), disease monitoring (69% and 27%) and prognostication (61% and 31%), respectively. Some respondents noted difficulty in determining appropriate scores in paraplegic patients or those with feeding tubes, while others found the instructions long or difficult. CONCLUSION: the Thai PPS Adult Suandok translated tool has good inter- and intra-rater reliability and can be used regularly for clinical care.

Prognostic factors in patients with advanced cancer: use of the patient-generated subjective global assessment in survival prediction.

PURPOSE: To determine whether elements of a standard nutritional screening assessment are independently prognostic of survival in patients with advanced cancer. PATIENTS AND METHODS: A prospective nested cohort of patients with metastatic cancer were accrued from different units of a Regional Palliative Care Program. Patients completed a nutritional screen on admission. Data included age, sex, cancer site, height, weight history, dietary intake, 13 nutrition impact symptoms, and patient- and physician-reported performance status (PS). Univariate and multivariate survival analyses were conducted. Concordance statistics (c-statistics) were used to test the predictive accuracy of models based on training and validation sets; a c-statistic of 0.5 indicates the model predicts the outcome as well as chance; perfect prediction has a c-statistic of 1.0. RESULTS: A training set of patients in palliative home care (n = 1,164) was used to identify prognostic variables. Primary disease site, PS, short-term weight change (either gain or loss), dietary intake, and dysphagia predicted survival in multivariate analysis (P < .05). A model including only patients separated by disease site and PS with high c-statistics between predicted and observed responses for survival in the training set (0.90) and validation set (0.88; n = 603). The addition of weight change, dietary intake, and dysphagia did not further improve the c-statistic of the model. The c-statistic was also not altered by substituting physician-rated palliative PS for patient-reported PS. CONCLUSION: We demonstrate a high probability of concordance between predicted and observed survival for patients in distinct palliative care settings (home care, tertiary inpatient, ambulatory outpatient) based on patient-reported information.

Survival implications of sudden functional decline as a sentinel event using the palliative performance scale.

BACKGROUND: This retrospective study analyzed sudden functional decline using the Palliative Performance Scale (PPSv2) for patients recently admitted to a palliative care unit (PCU) to determine if this adversely affects survival. There were 3328 patients in the cohort over a 13-year period admitted to a tertiary palliative care bed (71.1%) or a residential hospice bed (28.9%). Patient age ranged from 17-102 years old with 51.9% female and 48.1% male; the majority (88.3%) had a cancer diagnosis. RESULTS: Given several limitations noted in the study, six preliminary findings emerged: (1) The lower the initial PPS at PCU admission, the higher the likelihood of an abrupt drop occurring shortly after admission; (2) An abrupt decline in function appears to be associated with smaller survival probabilities; (3) A greater increment change in PPS may be associated with shorter survival probabilities; (4) The lower the PPS on admission, the shorter the survival; (5) When dropping a specific increment amount, the new survival projection appears similar to the PPS level dropped to; and (6) Sudden or abrupt functional decline may be a sentinel event. CONCLUSIONS: The data provide evidence that abrupt functional decline implies the likelihood of shorter survival in palliative care patients and may act as a sentinel marker. It is unclear whether these findings would be generalizable outside of a PCU. These results should be interpreted with caution as a prospective evaluation is needed to confirm the results. If substantiated, it may be that incorporating sudden functional decline into palliative prognostic models may increase their predictive accuracy.

An interdisciplinary computer-based information tool for palliative severe pain management.

OBJECTIVES: As patient care becomes more collaborative in nature, there is a need for information technology that supports interdisciplinary practices of care. This study developed and performed usability testing of a standalone computer-based information tool to support the interdisciplinary practice of palliative severe pain management (SPM). DESIGN: A grounded theory-participatory design (GT-PD) approach was used with three distinct palliative data sources to obtain and understand user requirements for SPM practice and how a computer-based information tool could be designed to support those requirements. RESULTS: The GT-PD concepts and categories provided a rich perspective of palliative SPM and the process and information support required for different SPM tasks. A conceptual framework consisting of an ontology and a set of three problem-solving methods was developed to reconcile the requirements of different interdisciplinary team members. The conceptual framework was then implemented as a prototype computer-based information tool that has different modes of use to support both day-to-day case management and education of palliative SPM. Usability testing of the computer tool was performed, and the tool tested favorably in a laboratory setting. CONCLUSION: An interdisciplinary computer-based information tool can be developed to support the different work practices and information needs of interdisciplinary team members, but explicit requirements must be sought from all prospective users of such a tool. Qualitative methods such as the hybrid GT-PD approach used in this research are particularly helpful for articulating computer tool design requirements.

Development and reliability testing of the Victoria Bowel Performance Scale (BPS).

With changes in bowel function being a common and often distressful issue for palliative care patients, the ability to easily monitor and record changes in bowel status would be helpful in addressing quality of care. Most bowel tools record either constipation or diarrhea, but not both. A new tool, the Victoria Bowel Performance Scale (BPS), was designed as an ordinal nine-point scale from -4 (severe constipation) to +4 (severe diarrhea) and includes three parameters: visual stool characteristics, bowel pattern, and ability to control defecation. This study tested the reliability of BPS using case scenarios in a test-retest format. Sixty-seven raters in Time Period 1 and 54 raters in Time Period 2 ranked the 18 cases. The intraclass correlation coefficients for absolute agreement were 0.822 and 0.853 for Time Periods 1 and 2, respectively. Results showed that the raters were consistent in their scoring over time, with an average Cohen's kappa of 0.70 over all of the raters. The average Pearson correlation coefficient between Time Periods 1 and 2 scores was 0.92. Further prospective testing in day-to-day clinical care is needed to further confirm the reliability and clinical utility of the BPS. A BPS management guideline has been developed to assist with decision making for each BPS score, which also requires validation.

A grounded theory guided approach to palliative care systems design.

As healthcare looks for new and innovative ways to deliver more services with less resources we are increasingly turning to informatics based solutions. However, the means by which information systems (IS) are both designed and implemented will impact how successful the system will be at enhancing care delivery. We believe a key component to successful IS design is the methodological rigor by which design requirements are gleaned and applied. This paper describes our use of a grounded theory (GT) guided methodology for designing an ontology of palliative care severe pain management. In this paper we illustrate how the methodological rigor of GT was applied to three palliative information sources to allow us to gain an understanding of how severe pain is managed. We then illustrate how that understanding was formalized into an ontology and applied to IS design of a computer based tool to enhance education around palliative care severe pain management.

Use of Palliative Performance Scale in end-of-life prognostication.

BACKGROUND: Current literature suggests clinicians are not accurate in prognostication when estimating survival times of palliative care patients. There are reported studies in which the Palliative Performance Scale (PPS) is used as a prognostic tool to predict survival of these patients. Yet, their findings are different in terms of the presence of distinct PPS survival profiles and significant covariates. OBJECTIVE: This study investigates the use of PPS as a prognostication tool for estimating survival times of patients with life-limiting illness in a palliative care unit. These findings are compared to those from earlier studies in terms of PPS survival profiles and covariates. METHODS: This is a retrospective cohort study in which the admission PPS scores of 733 palliative care patients admitted between March 3, 2000 and August 9, 2002 were examined for survival patterns. Other predictors for survival included were age, gender, and diagnosis. RESULTS: Study findings revealed that admission PPS score was a strong predictor of survival in patients already identified as palliative, along with gender and age, but diagnosis was not significantly related to survival. We also found that scores of PPS 10% through PPS 50% led to distinct survival curves, and male patients had consistently lower survival rates than females regardless of PPS score. CONCLUSION: Our findings differ somewhat from earlier studies that suggested the presence of three distinct PPS survival profiles or bands, with diagnosis and noncancer as significant covariates. Such differences are likely attributed to the size and characteristics of the patient populations involved and further analysis with larger patient samples may help clarify PPS use in prognosis.