Quality Of Life In Palliative Care Patients Research Articles

Understanding Quality of Life for Palliative Patients With Dysphagia Using the Swallowing Quality of Life (SWAL-QOL) Questionnaire.

There are few studies concerning the differences in quality-of-life (QOL) between palliative care patients with and without dysphagia to date. We aimed to compare the QOL and symptoms in palliative patients with and without dysphagia using Swallowing Quality of Life (SWAL-QOL). Eighty-one palliative patients with and without dysphagia underwent the SWAL-QOL questionnaire. A series of Mann Whitney U tests were performed between non-dysphagic and dysphagic groups for the total SWAL-QOL score and the 11 SWAL-QOL domains. Dysphagia significantly impacted patients' QOL in the dysphagic group (mean, 69.5; SD 21.9) than non-dysphagic group (mean, 83.2; SD 14.8) (P = 0.006). Significant differences were observed between both groups for the domains of burden, eating desire, eating duration, symptoms, food selection, communication and mental health. The results also showed that the dysphagic group had lower symptom score across all symptoms, suggesting higher symptom burdens. This study is the first to examine QOL and swallow symptoms in palliative care patients with and without dysphagia. Dysphagia causes significantly worse QOL in palliative care patients. Screening for dysphagia and managing its impact on symptoms and QOL domains is important in palliative care.

Questionnaires measuring quality of life and satisfaction of patients and their relatives in a palliative care setting-German translation of FAMCARE-2 and the palliative care subscale of FACIT-Pal.

The evaluation of quality of life (QoL) and satisfaction with care in palliative care patients and their relatives is an important aspect of palliative care research, likewise important to get a direct feedback for the success of treatment. Here, questionnaires are important tools for measuring outcomes of care in medicine. Several validated, predominantly English, questionnaires already exist. These have been translated in different languages but German. The Functional Assessment of Chronic Illness Therapy (FACIT) is an established tool for the evaluation of QoL in cancer patients. The FACIT-Pal, a 46-itemquestionnaire of this group of questionnaires, measures the QoL in palliative care patients. It includes a new palliative care subscale which is not yet available in German. The FAMCARE-2, a 17-item-questionnaire, evaluates the relatives' satisfaction with the care and support they received from palliative care team. The translation process followed a protocol including multiple independent translators as well as a forth and back translation. A German version of FAMCARE-2 and FACIT-Pal was translated based on the original questionnaire. Relevant differences between the English original versions and the back translations weren't revealed by the original scale developers. The final versions of the German translations have been authorized by the scale developers. The FAMCARE-2 and the FACIT-Pal are now available in German and can be used for research and quality control purposes.

Factors associated with quality of life in a cohort of patients with palliative advanced cancer from a developing country: Relevance of perception of cancer curability.

93 Background: Improving quality of life (QOL) is a key goal in palliative care for patients with advanced cancer. Most studies about QOL in palliative care patients have been performed in the developed world. However, little is known about the factors that influence patients QOL in developing countries. The aim of this study is to describe factors associated with QOL in a cohort of patients with advanced cancer who were enrolled in the outpatient clinic public hospital in Santiago, Chile. Methods: Patients with advanced cancer admitted to the National Program of Palliative Care at a public Hospital in Santiago, Chile were prospectively enrolled in a study to assess QOL longitudinally. QOL was assessed with the EORTC-QLQ-PAL 15 questionnaire. Demographics, symptom intensity, depression and anxiety were assessed. Descriptive statistics and regression analysis were performed. Information about cancer curability and perception of personal health were also included. Results: In this preliminary report, the first 37 patients were included. Baseline characteristics were: mean patient age was 64, 21 (57%) females, 14 (38%) had GI cancer, 7 (19%) lung cancer, 4 (11%) breast cancer and 12 (22%) other. Mean (SD) QOL was 63 (34) in a 0 to 100 scale. QOL was not associated with age, gender, functionality, depression, anxiety, spiritual pain or financial distress. QOL was negatively associated with total symptom burden (coef -.53, p = .48), and positively associated with believing that cancer was curable (coef 33.3, p = .003). In a multivariate analysis, QOL was independently associated with both lower overall symptom burden (coef -.55, p = .38) and believing that cancer was curable (coef 28.6, p = .009). Conclusions: In palliative care patients with advanced cancer from a developing country, QOL was associated with lower overall symptom burden and with believing that cancer was curable. Further studies are needed to explore whether clarifying prognostic information about cancer curability in developing countries may impact patients’ QOL.

Preliminary Results of the Generation of a Shortened Quality-of-Life Assessment for Patients with Advanced Cancer: The FACIT-Pal-14

Shortened quality-of-life (QOL) tools are advantageous in palliative care patients. Development of such tools begins with the identification of issues relevant to a population. The purpose of this study was to identify the most important items of the Functional Assessment of Chronic Illness Therapy-Palliative Care (FACIT-Pal) to create an abbreviated questionnaire for future palliative care trials. A convenience sample of patients and health care professionals (HCPs) assessed the relevance of each item of the FACIT-Pal and whether they would include the item in a final questionnaire. Patients and HCPs identified their top 10 most important issues and were asked whether items were inappropriate, upsetting, or irrelevant; a shortened questionnaire was generated from this input. Sixty patients and 56 HCPs participated. The median score in the Karnofsky Performance Scale (KPS) of patients was 70, and the majority of HCPs were radiation oncologists. The 46-item questionnaire was shortened to 14 questions, retaining several items from the Functional Assessment of Cancer Therapy-General (FACT-G) as well as issues pertaining specifically to palliative care patients. Items within the emotional, physical, and functional well-being subscales were retained along with those for various symptoms including constipation, nausea, dyspnea, and sleep. No new content beyond what is covered by the FACIT-Pal was identified consistently by either HCPs or patients. Similarly, no item was consistently rated as being inappropriate, upsetting, or irrelevant in the 14-item questionnaire. The FACIT-Pal-14, a shortened 14-item questionnaire has been generated for the palliative care population. Future studies should complete psychometric validation of this instrument for the assessment of QOL in palliative care patients.

Befinden von Palliativpatienten im Verlauf einer spezialisierten ambulanten oder stationären Versorgung

A major goal of palliative care is sustaining quality of life (QoL) for patients suffering from severe symptoms, which is determined by physical and psychological consequences of an illness as well as other factors, such as the meaning of life and family support. Patients have reported high levels of QoL despite worsening symptoms. The self-estimated QoL of patients receiving outpatient and inpatient palliative care was analyzed using retrospective data from the German Hospice and Palliative Care Evaluation (HOPE). A descriptive analysis of questionnaires given to 2,030 patients (1,616 inpatients, 414 outpatients) and their professional care takers was carried out assessing symptoms, well-being and care-related information. At the beginning of treatment inpatients had a higher symptom burden than outpatients. Reduced pain, tiredness and weakness and improved well-being allowed inpatients to be discharged. Outpatients suffering from severe dyspnea, constipation and anxiety were more likely to be admitted to hospital. Well-being was associated with symptom burden, weakness and tiredness in both self-evaluation and care-taker assessment particularly for outpatients. While tiredness and weakness influenced QoL especially for outpatients, patient-specific factors may surpass them in patient perception. To improve the QoL of palliative care patients, individual factors must be assessed in addition to symptom control.

QOLLTI-F: measuring family carer quality of life

Background: The primary goal of palliative care is to optimize the quality of life (QOL) of people living with a life-threatening illness and that of their families. While there have been important advances in measurement of the QOL of palliative care patients, little attention has been paid to the QOL of their carers (family caregivers). To develop and deliver the most effective services to these carers, their QOL needs to be measured with acceptable and psychometrically sound instruments that have content validity. Methods: This study reports three phases of the development and testing of such a measure: QOLLTI-F, Quality of Life in Life Threatening Illness -Family Carer Version, simultaneously in English and French. Participants were carers from 12 Canadian palliative care services who were asked to complete QOLLTI-F on three occasions. Results: The final version of QOLLTI-F consists of 16 items. It was deemed acceptable by the vast majority of carers and a longer, 24-item version was completed in a median of 12 min. Content validity was assured by inclusion of all domains reported by carers to be important to their QOL: state of carer, patient wellbeing, quality of care, outlook, environment, finances and relationships. Construct validity was demonstrated, as principal components analysis indicated that the 16 items did indeed reflect these seven domains. Furthermore, the seven domain scores predicted 53% of the variance in global QOL, although the QOLLTI-F Total score predicted less well (43%). The test-retest reliability for the QOLLTI-F Total score was 0.77-0.80 and ranged from 0.50 to 0.79 for the seven domain scores. All QOLLTI-F scores were shown to be significantly different between days the carers considered bad, average and good, demonstrating responsiveness to change, with the exception of the Financial Concerns submeasure, which did not distinguish between average and good days. Conclusions: QOLLTI-F is unique in that in measuring one person’s QOL (the carer’s) it includes their perception of the condition of another (the patient). This attests to the close relationship between the two. It is also unique in that its content is derived from a qualitative study asking carers what is important to their own QOL, rather than focusing on the changes or burdens related to caregiving. QOLLTI-F also has the advantage of being briefer than other carer QOL measures. It contains measures of seven different domains that are determinants of carer QOL, in addition to a summary score. All these measures are valid, reliable and responsive to change in QOL.

What Determines the Quality of Life of Terminally Ill Cancer Patients from Their Own Perspective?

Although several instruments have been developed to measure the quality of life (QOL) of palliative care patients, a rigorous research study has not specifically asked patients themselves what is important to their QOL. It is, therefore, not clear whether these instruments measure what is most important to these patients' QOL. To understand the primary determinants of the QOL of palliative care patients with cancer. The study used a qualitative paradigm. Participants were interviewed concerning what was important to their QOL. A systematic content analysis of the transcripts was carried out by all the investigators. Five broad domains were found to be importnat determinants of patient QOL: (1) the patient's own state, including physical and cognitive functioning, psychological state, and physical condition; (2) quality of palliative care; (3) physical environment; (4) relationships; and (5) outlook. Existing instruments cover many of these domains, but no single instrument includes all of the relevant content. The McGill Quality of Life Questionnaire, which we developed previously, has been revised based on these data.