Quality-of-life assessment in a palliative care setting in Germany: an outcome evaluation (original) (raw)
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Quality of Life Assessment and Outcome of Palliative Care
Journal of Pain and Symptom Management, 2001
Quality of life (QoL) assessment is crucial for the evaluation of palliative care outcome. In this paper, our methodological approach was based on the creation of summary measures. Fifty-eight Palliative Care Units (PCUs) in Italy participated in the study. Each PCU randomly selected patients to be 'evaluated' among the consecutively 'registered' patients. At baseline (first visit) and each week the patient was asked to fill in a QoL questionnaire, the Therapy Impact Questionnaire (TIQ). Short-survivors (Ͻ 7 days) were not included in the QoL study. The random sample of patients (n ϭ 601) was highly representative of the general patient population cared for by the PCUs in Italy. The median survival was 37.9 days. We collected 3546 TIQ, 71.4 % completed by the patients. A Summary Measure Outcome score was calculated for 409 patients (81% of the patients included in the QoL study). The results of this national study showed that cooperative clinical research in palliative care is possible and QoL measures can be used to assess the outcome.
Quality of life in palliative care cancer patients: a literature review
Journal of clinical …, 2006
variable of interest. This article also describes conceptual and operational definitions of quality of life and explores the implicit and explicit goals of research. Results. Quality of life is a concept relevant to the discipline of nursing. Nurses, especially oncology and palliative care nurses, actively contributed to the development of the quality of life concept through instrument development and population description. Conclusion. Nurses working in German palliative care settings do change the quality of life of patients they care for, but there are no systematic standards of assessing these outcomes. Relevance to clinical practice. There are challenges related to measuring quality of life in patient-focused palliative care and research. Systematic quality of life assessment in all palliative care settings will establish quality assurance and the further development of this very young discipline in Germany.
The "Palliative Care Quality of Life Instrument (PQLI)" in terminal cancer patients
Health and quality of life outcomes, 2004
This paper describes the development of a new quality of life instrument in advanced cancer patients receiving palliative care. The Palliative Care Quality of Life Instrument incorporates six multi-item and one single-item scale. The questionnaire was completed at baseline and one-week after. The final sample consisted of 120 patients. The average time required to complete the questionnaire, in both time points, was approximately 8 minutes. All multi-item scales met the minimal standards for reliability (Cronbach's alpha coefficient > or =.70) either before or during palliative treatment. Test-retest reliability in terms of Spearman-rho coefficient was also satisfactory (p < 0.05). Validity was demonstrated by inter-item correlations, comparisons with ECOG performance status, factor analysis, criterion-related validation, and correlations with the Assessment of Quality of Life in Palliative Care Instrument (AQEL), and the European Organisation for Research and Treatment of...
Evaluation of quality of life in a palliative care context: an integrative literature review
Revista Latino-Americana de Enfermagem, 2012
The use of scales that have been validated and standardized for different cultures is very useful for identifying demands in the field of Palliative Care and implementing the most appropriate care. This integrative literature review focuses on instruments assessing the Quality of Life of patients under Palliative Care through a journal search in electronic databases. The study consisted of 49 papers identified in Medline/PubMed, of which 18 met the inclusion criteria previously defined. Information concerning the selected studies is presented and later categorized, with a greater emphasis on the analysis of the psychometric properties of validations of the Palliative Outcome Scale, conducted in three countries. This review enabled the identification of instruments already developed and validated for different cultures, increasing the possibility of knowledge in the field.
Validation and Clinical Application of the German Version of the Palliative Care Outcome Scale
Journal of Pain and Symptom Management, 2005
The Palliative Care Outcome Scale (POS) is a multidimensional instrument covering physical, psychosocial, spiritual, organizational, and practical concerns. This study validated the German version of the POS and used the tool in different palliative care settings in Germany and Austria. Patients and staff were asked to complete the POS three times and evaluate the questionnaire and the translation afterwards. One hundred eighteen patients (44 male, 74 female, mean age 63 years, all suffering from advanced cancer) completed the POS one time, 55 patients two times, and 36 patients three times. Spearman's rho was highly significant for pain, other symptoms, anxiety, and life worthwhile in the first two assessments. The third assessment showed significant correlations for pain, other symptoms, anxiety, and family anxiety. Seventy-seven of 87 patients answered questions regarding the scale and the translation. All questions other than "Over the past 3 days, have you felt good about yourself?" were understandable for patients. Almost half of the staff was undecided whether the tool was reflecting the patients' condition. In contrast, the majority of patients liked it. Thus, the German version of the POS is well accepted by patients and staff and appears to be valid, although there are some areas where the scale would benefit from expansion to more closely capture staff and patient concerns. J Pain Symptom Manage 2005;30:51-62. Ć 2005 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
International Journal of Cancer, 2001
In 1986, the European Organization for Research and Treatment (EORTC) initiated a research program to develop an integrated, modular approach for evaluating the quality of life of patients participating in international clinical trials. The questionnaire was designed to measure cancer patients' physical, psychological and social functions. The questionnaire is composed of 5 multiitem scales (physical, role, social, emotional and cognitive functioning) and 9 single items (pain, fatigue, financial impact, appetite loss, nausea/ vomiting, diarrhea, constipation, sleep disturbance and quality of life). It was administered to the patients before the initiation of palliative treatment and then once again during the treatment. The validation of the questionnaire took place at Areteion Hospital, while the translation was conducted by the EORTC bureau. The final validation sample consisted of 120 cancer patients. The clinical variable assessed was the performance status. The aim of our study was to assess the applicability of this quality of life measurement on a Hellenic sample of cancer patients receiving palliative care. The results showed that the questionnaire was well accepted in the present patient population. In addition, the questionnaire was found to be useful in detecting the effectiveness of palliative treatment over time. The scale reliability was very good (pretreatment from 0.57-0.79, ontreatment from 0.56 -0.75), especially for the functioning scale. In addition, very good validity was found in all the approaches used. Moreover, the factor analysis results in a 6-factor solution that satisfies the criteria of reproducibility, interpretability and confirmatory setting. Performance status showed an improvement (p < 0.0025) during the studied period. These results support that the QLQ-C30 (version 3.0) has proven to be a reliable and valid measure of the quality of life in Greek cancer patients receiving palliative care treatment.
Journal of pain and symptom management, 2018
Quality of life (QoL) is a central focus of care in advanced cancer. Specialized instruments, such as the Quality of Life at the End of Life-Cancer (QUAL-EC), may be useful to assess psychosocial issues associated with QoL unique to this population. To evaluate the measurement of the psychosocial dimensions of QoL using the German translation of the QUAL-EC-Psychosocial (QUAL-EC-P) questionnaire, including factor structure and psychometrics. About 183 patients with advanced cancer from the University Medical Center Hamburg-Eppendorf and University Medical Center Leipzig completed the QUAL-EC-P questionnaire. We conducted exploratory factor analysis as well as item and reliability analysis. We examined convergent validity with correlations between the scale and relevant psychological constructs. The sample was 60% female with mean age of 57.7 (SD = 11.7). We extracted three factors accounting for 44% of the variance aligning with the structure of the instrument. The QUAL-EC-P questio...
Health and Quality of Life Outcomes
Background International studies indicate deficits in end-of-life care that can lead to distress for patients and their next-of-kin. The aim of the study was to translate and validate the “Care of the Dying Evaluation” (CODE) into German (CODE-GER). Methods Translation according to EORTC (European Organisation for Research and Treatment of Cancer) guidelines was followed by data collection to evaluate psychometric properties of CODE-GER. Participants were next-of-kin of patients who had died an expected death in two hospitals. They were invited to participate at least eight, but not later than 16 weeks after the patient’s death. To calculate construct validity, the Palliative care Outcome Scale (POS) was assessed. Difficulty and perceived strain of answering the questionnaire were assessed by a numeric scale (0–10). Results Out of 1137 next-of-kin eligible, 317 completed the questionnaire (response rate: 27.9%). Data from 237 main sample participants, 38 interraters and 55 next-of-k...
Quality of Life of Palliative Care Patients in the Last Two Weeks of Life
Journal of Pain and Symptom Management, 2002
little is known about the QOL in the terminal phase. We profiled the QOL of 58 advanced cancer patients during their last 2 weeks of life using the McGill QOL questionnaire-Hong Kong version. The patients provided ratings of QOL an average of 5.6 (median 6) days predeath. Palliative care services were successful in maintaining the total QOL score during the dying phase. The mean score was 7.0 of 10. Among the various domains, the physical and existential domains scored relatively poorly at 5.9 and 6 of 10, respectively. The worst physical symptom and meaning of life were the individual items with the poorest scores (4.8 and 5.4 of 10, respectively). Compared with admission, there was statistically significant improvement in the worst physical symptom (P ϭ 0.02) and eating item (P ϭ 0.002), but deterioration in physical well-being (P ϭ 0.03), meaning of existence (P ϭ 0.007), and satisfaction with oneself (P ϭ 0.04). In conclusion, QOL evaluation during the terminal phase identifies important aspects requiring improvement during the last two weeks of life. Physical and existential domains of dying cancer patients needed more attention.