No full-text available
To read the full-text of this research,
you can request a copy directly from the authors.
Quality of Life: Main Goal of Palliative Care
ResearchGate has not been able to resolve any citations for this publication.
Background
The purposes of this study, performed on a large sample of cancer patient-caregiver dyads, were: i) to simultaneously investigate, using an individualized quality of life (QoL) measure (Schedule for the Evaluation of Individual QoL, SEIQoL), the QoL domains freely expressed by cancer patients and their caregivers, and ii) to explore overlapping between the SEIQoL assessment and QoL assessment using traditional instruments.
Methods
The study employed a cross-sectional design including cancer patients who were going to receive chemotherapy treatment and their caregivers. Quality of life was assessed using condition-specific questionnaires (EORTC QLQ-C30 and CarGOQoL), generic health-related questionnaire (SF-36), and open individualized measure (SEIQoL).
Results
The final sample included 205 patient-caregiver dyads. From the SEIQoL, Family, Health, and Leisures were the most freely expressed QoL domains by patients and caregivers, but reported with different weights. Love life and financial issues were less spontaneously mentioned. The SEIQoL index was moderately correlated to the condition-specific QoL questionnaires (R lower than |0.40|) and to SF-36 (correlation coefficients: R ranging from 0.17 to 0.31).
Conclusion
Individualized QoL measures allow individuals to spontaneously express important, non-predefined domains. This study highlights the need to explore QoL using a combination of individualized questionnaires and standardized questionnaires, capturing complementary facets that patients consider important in their life.
To further evaluate the higher-order measurement structure of the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire (QLQ-C30) questionnaire, with the aim of generating a summary score.
Using pretreatment QLQ-C30 data (N=3,282), we conducted confirmatory factor analyses to test seven previously evaluated higher-order models. We compared the summary score(s) derived from the best performing higher-order model with the original QLQ-C30 scale scores, using tumor stage, performance status and change over time (N=244) as grouping variables.
Whereas all models showed acceptable fit, we continued in the interest of parsimony with known-groups validity and responsiveness analyses using a summary score derived from the single higher-order factor model. The validity and responsiveness of this QLQ-C30 Summary Score was equal to, and in many cases superior to the original, underlying QLQ-C30 scale scores.
Our results provide empirical support for a measurement model for the QLQ-C30 yielding a single summary score. The availability of this Summary Score can avoid problems with potential Type I errors that arise due to multiple testing when making comparisons based on the 15 outcomes generated by this questionnaire, and may reduce sample size requirements for HRQL studies using the QLQ-C30 questionnaire when an overall summary score is a relevant primary outcome.
Copyright © 2015 Elsevier Inc. All rights reserved.
Purpose:
Missing data due to attrition present a challenge for the assessment and interpretation of change and response shift in HRQL outcomes. The objective was to handle such missingness and to assess response shift and 'true change' with the use of an attrition-based multigroup structural equation modeling (SEM) approach.
Method:
Functional limitations and health impairments were measured in 1,157 cancer patients, who were treated with palliative radiotherapy for painful bone metastases, before [time (T) 0], every week after treatment (T1 through T12), and then monthly for up to 2 years (T13 through T24). To handle missing data due to attrition, the SEM procedure was extended to a multigroup approach, in which we distinguished three groups: short survival (3-5 measurements), medium survival (6-12 measurements), and long survival (>12 measurements).
Results:
Attrition after third, sixth, and 13th measurement occasions was 11, 24, and 41 %, respectively. Results show that patterns of change in functional limitations and health impairments differ between patients with short, medium, or long survival. Moreover, three response-shift effects were detected: recalibration of 'pain' and 'sickness' and reprioritization of 'physical functioning.' If response-shift effects would not have been taken into account, functional limitations and health impairments would generally be underestimated across measurements.
Conclusions:
The multigroup SEM approach enables the analysis of data from patients with different patterns of missing data due to attrition. This approach does not only allow for detection of response shift and assessment of true change across measurements, but also allow for detection of differences in response shift and true change across groups of patients with different attrition rates.
Quality of life (QoL) and performance status predict survival in advanced cancer patients; these relationships have not been explored in the hospice palliative care setting. The aim of this study was to examine the survival predictability of patient-reported QoL using the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C15-PAL questionnaire in far advanced cancer inpatients at the very end of life.
This is a retrospective cohort study. Patients reported QoL using the EORTC QLQ-C15-PAL. One hundred sixty-two inpatients in hospice palliative wards of six hospitals in South Korea were followed until death or the end of the study. Additional symptoms and performance status were assessed by the MD Anderson Symptom Inventory-Korean (MDASI-K), Palliative Performance Scale (PPS) and Eastern Cooperative Oncology Group (ECOG) performance status. Correlations between EORTC QLQ-C15-PAL, MDASI-K, PPS, and ECOG were assessed. Survival analyses were performed using Cox proportional hazard models.
Patients' median survival was less than 1 month. Physician-reported PPS significantly predicted survival (hazard ratio [HR] 0.493; p < 0.001). From the EORTC QLQ-C15-PAL, patient-reported physical functioning predicted survival (HR = 0.65; p < 0.001). Other six domains of EORTC QLQ-C15-PAL were significantly related to survival after adjustment. Those domains were global health status, emotional functioning, fatigue, nausea/vomiting, appetite loss, and constipation.
EORTC QLQ-C15-PAL can be an independent prognostic factor in inpatients with far advanced cancer. Patient-reported physical functioning showed survival predictability as good as physician-reported performance status. It is notable that the QLQ instrument is useful even for patients in their final month of life. Cancer anorexia-cachexia syndrome-related symptoms may be independent prognostic symptoms. Prospective study is warranted.
many measures of quality-of-life (QoL) may not be suitable for older people in care homes, and do not cover the most relevant domains for individuals.
to describe QoL of older people living in care homes using the SEIQoL-DW and the two 10-point rating scales, and to describe how people were using these measures.
we used quantitative methods to describe QoL, and qualitative methods to explore residents' experiences of completing the measures.
three care homes in the United Kingdom.
twenty residents.
residents completed the measures in interviews. We report descriptive statistics for QoL, the most important QoL domains for residents, completion rates and experiences of administering the instruments.
the most important QoL domains identified in the SEIQoL-DW were leisure activities; family; relationships; social life; independence and peace and contentment. Physical limitations and difficulty in understanding the instructions and concepts made completing it a challenge. The SEIQoL index was strongly correlated with a single 10-point rating of current QoL (rho = 0.67, P = 0.007).
to fully understand residents' QoL, detailed interview-based instruments, administered by an experienced interviewer are needed. To measure current QoL, for example, as an outcome measure, a simple single rating scale may suffice.
Many quality-of-life assessment tools are not feasible in palliative care settings because of the severe impairment of the physical, cognitive, and psychological status of patients. This study investigated whether comprehensive instruments can be replaced by a single item concerning the well-being of patients.
From April to December 2008 patients receiving palliative care in three different settings (palliative care unit, inpatient unit of the department of radiotherapy, inpatient hospice) were asked to answer the assessment tools Functional Assessment of Chronic Illness Treatment (FACIT-G), European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC-QLQ-C30), Schedule for the Evaluation of the Individual Quality of Life (SEIQoL), and the Minimal Documentation System (MIDOS) including a single item on well-being. Correlations of sum and specific domain scores were used for correlational analysis.
Datasets of 72 patients were collected. The MIDOS single item on well-being correlated significantly with the QoL indexes of the EORTC (Spearman rank correlation r = -0.563) and FACIT-G (0.527). SEIQoL had low to moderate correlations with the other assessment tools. Subscales on physical functioning from the FACIT-G (r = 0.583) and the EORTC-QLQ-C30 (r = 0.385) had the highest correlation with the single item on well-being. Well-being correlated higher with nonphysical subscales of the QoL instruments for patients in the palliative care unit than in the radiotherapy department.
The single item is unable to completely replace comprehensive questionnaires, but it is useful to initiate communication on QoL and can be recommended as a substitute for physical-functional aspects of QoL assessment in the palliative care setting.
The construct 'meaning in life' (MiL) has become increasingly important in palliative care. Several meaning-focused interventions have been developed recently. The aim of this study was to investigate MiL in patients with amyotrophic lateral sclerosis (ALS) and compare the findings with a representative sample of the German population. In the newly developed 'Schedule for Meaning in Life Evaluation' (SMiLE), respondents first list individual areas that provide meaning to their life before rating their current level of importance and satisfaction with each area. Overall indices of weighting (IoW, range 20-100), satisfaction (IoS, range 0-100), and weighted satisfaction (IoWS, range 0-100) are calculated. Results of our study showed that 46 ALS patients completed the SMiLE: the IoS was 74.7 ± 20.2, the IoW 88.1 ± 10.1, and the IoWS 76.3 ± 20.5. Satisfaction with MiL was negatively associated with disease duration and degree of functional impairment. After adjustment for age, sex, and marital status, the representative sample (n = 977) scored significantly higher in the IoS (82.8 ± 14.7) and the IoWS (83.3 ± 14.8). Compared to the general population, ALS patients list more meaning-relevant areas, are more likely to list partner, and less likely to list health. Thus, response shift seems to be a central coping mechanism in ALS patients. Regarding their major MiL areas, they shift their focus away from decreasing health status and towards supportive relationships.
A 36-item short-form (SF-36) was constructed to survey health status in the Medical Outcomes Study. The SF-36 was designed for use in clinical practice and research, health policy evaluations, and general population surveys. The SF-36 includes one multi-item scale that assesses eight health concepts: 1) limitations in physical activities because of health problems; 2) limitations in social activities because of physical or emotional problems; 3) limitations in usual role activities because of physical health problems; 4) bodily pain; 5) general mental health (psychological distress and well-being); 6) limitations in usual role activities because of emotional problems; 7) vitality (energy and fatigue); and 8) general health perceptions. The survey was constructed for self-administration by persons 14 years of age and older, and for administration by a trained interviewer in person or by telephone. The history of the development of the SF-36, the origin of specific items, and the logic underlying their selection are summarized. The content and features of the SF-36 are compared with the 20-item Medical Outcomes Study short-form.
In 1986, the European Organization for Research and Treatment of Cancer (EORTC) initiated a research program to develop an integrated, modular approach for evaluating the quality of life of patients participating in international clinical trials.
We report here the results of an international field study of the practicality, reliability, and validity of the EORTC QLQ-C30, the current core questionnaire. The QLQ-C30 incorporates nine multi-item scales: five functional scales (physical, role, cognitive, emotional, and social); three symptom scales (fatigue, pain, and nausea and vomiting); and a global health and quality-of-life scale. Several single-item symptom measures are also included.
The questionnaire was administered before treatment and once during treatment to 305 patients with nonresectable lung cancer from centers in 13 countries. Clinical variables assessed included disease stage, weight loss, performance status, and treatment toxicity.
The average time required to complete the questionnaire was approximately 11 minutes, and most patients required no assistance. The data supported the hypothesized scale structure of the questionnaire with the exception of role functioning (work and household activities), which was also the only multi-item scale that failed to meet the minimal standards for reliability (Cronbach's alpha coefficient > or = .70) either before or during treatment. Validity was shown by three findings. First, while all interscale correlations were statistically significant, the correlation was moderate, indicating that the scales were assessing distinct components of the quality-of-life construct. Second, most of the functional and symptom measures discriminated clearly between patients differing in clinical status as defined by the Eastern Cooperative Oncology Group performance status scale, weight loss, and treatment toxicity. Third, there were statistically significant changes, in the expected direction, in physical and role functioning, global quality of life, fatigue, and nausea and vomiting, for patients whose performance status had improved or worsened during treatment. The reliability and validity of the questionnaire were highly consistent across the three language-cultural groups studied: patients from English-speaking countries, Northern Europe, and Southern Europe.
These results support the EORTC QLQ-C30 as a reliable and valid measure of the quality of life of cancer patients in multicultural clinical research settings. Work is ongoing to examine the performance of the questionnaire among more heterogenous patient samples and in phase II and phase III clinical trials.
Regression methods were used to select and score 12 items from the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36) to reproduce the Physical Component Summary and Mental Component Summary scales in the general US population (n=2,333). The resulting 12-item short-form (SF-12) achieved multiple R squares of 0.911 and 0.918 in predictions of the SF-36 Physical Component Summary and SF-36 Mental Component Summary scores, respectively. Scoring algorithms from the general population used to score 12-item versions of the two components (Physical Components Summary and Mental Component Summary) achieved R squares of 0.905 with the SF-36 Physical Component Summary and 0.938 with SF-36 Mental Component Summary when cross-validated in the Medical Outcomes Study. Test-retest (2-week)correlations of 0.89 and 0.76 were observed for the 12-item Physical Component Summary and the 12-item Mental Component Summary, respectively, in the general US population (n=232). Twenty cross-sectional and longitudinal tests of empirical validity previously published for the 36-item short-form scales and summary measures were replicated for the 12-item Physical Component Summary and the 12-item Mental Component Summary, including comparisons between patient groups known to differ or to change in terms of the presence and seriousness of physical and mental conditions, acute symptoms, age and aging, self-reported 1-year changes in health, and recovery for depression. In 14 validity tests involving physical criteria, relative validity estimates for the 12-item Physical Component Summary ranged from 0.43 to 0.93 (median=0.67) in comparison with the best 36-item short-form scale. Relative validity estimates for the 12-item Mental Component Summary in 6 tests involving mental criteria ranged from 0.60 to 107 (median=0.97) in relation to the best 36-item short-form scale. Average scores for the 2 summary measures, and those for most scales in the 8-scale profile based on the 12-item short-form, closely mirrored those for the 36-item short-form, although standard errors were nearly always larger for the 12-item short-form.
Quality of life is an increasingly important outcome measure in medicine and health care. Many measures of quality of life present patients with predetermined lists of questions that may or may not be relevant to the individual patient. This paper describes a brief measure, the SEIQoL-DW, which is derived from the schedule for evaluation of individual quality of life (SEIQoL). The measure allows respondents to nominate the areas of life which are most important, rate their level of functioning or satisfaction with each, and indicate the relative importance of each to their overall quality of life. Given its practicality and brevity, the measure should prove particularly useful in clinical situations where patient generated data on quality of life is important. This article describes the first clinical application of the measure, assessing the quality of life of a cohort of patients with HIV/AIDS managed in general practice.
This study compared the performance of four brief screening measures for depression in a group of terminally ill patients. The methods included 1) a single-item interview assessing depressed mood, 2) a two-item interview assessing depressed mood and loss of interest in activities, 3) a visual analog scale for depressed mood, and 4) the Beck Depression Inventory-Short Form.
Semistructured diagnostic interviews for depression were administered to 197 patients receiving palliative care for advanced cancer. The interview diagnoses served as the standards against which the screening performance of the four brief screening methods was assessed.
Single-item interview screening correctly identified the eventual diagnostic outcome of every patient, substantially outperforming the questionnaire and visual analog measures.
Brief screening measures for depression are important clinical tools for terminally ill patients. For diagnostic purposes, however, they do not approach the validity of a single-item interview that asks, in effect, "Are you depressed?"
We compared the change over time of individual quality of life (QOL) versus health-related QOL (HRQOL) and functional status in palliative care patients with amyotrophic lateral sclerosis (ALS). Forty-two patients with ALS performed the following assessments: the ALS functional rating scale (ALSFRS), the Sickness Impact Profile (SIP), the Short Form 36 (SF-36), and the Schedule for the Evaluation of Individual QOL-Direct Weighting (SEIQOL-DW). The SF-36 and the SEIQOL-DW were assigned at random. Patients were examined at least three times at 2-month intervals. There was a significant decrease from visit 1 to 3 (4-month period) in the function-based values of the SIP, SF-36, and ALSFRS. Despite this progressive decline of physical function and HRQOL, individual QOL as assessed by the SEIQOL-DW remained stable throughout the observation period. Correspondingly, there was a clear correlation between the ALSFRS, the SIP, and the SF-36, but no correlation between these scales and the SEIQOL-DW. The QOL domains most often named in the SEIQOL-DW were family, friends/social life, health, and profession. Thus, individual QOL appears to be largely independent from physical function in severely ill patients with ALS. Because of the characteristics of the scale, assessment of individual QOL may have an interventional value in palliative care.
The aim of this paper is to systematically review and analyse the validity and reliability of Antonovsky's life orientation questionnaire/sense of coherence scale (SOC).
The study is descriptive and analytical with a systematic integration of the contemporary knowledge base on the salutogenic research published 1992-2003. The review includes 458 scientific publications and 13 doctoral theses.
Worldwide, based on postgraduate scientific publications in eight authorized databases, doctoral theses, and available books.
The SOC questionnaire has been used in at least 33 languages in 32 countries with at least 15 different versions of the questionnaire. In 124 studies using SOC-29 the Cronbach's alpha ranges from 0.70 to 0.95. The alpha values in 127 studies using SOC-13 range from 0.70 to 0.92, and in 60 studies using a modified SOC scale range from 0.35 to 0.91. Test-retest correlation show stability and range from 0.69 to 0.78 (1 year), 0.64 (3 years), 0.42 to 0.45 (4 years), 0.59 to 0.67 (5 years) to 0.54 (10 years). The means of SOC-29 range 100.50 (SD 28.50) to 164.50 (SD 17.10) points and SOC-13 from 35.39 (SD 0.10) to 77.60 (SD 13.80) points. After 10 years SOC seems to be comparatively stable, but not as stable as Antonovsky initially assumed. SOC tends to increase with age. The factorial structure of SOC seems rather to be multidimensional than unidimensional. SOC predicts a positive outcome in a long term perspective, although there are divergent findings reported. The SOC scale seems to be a reliable, valid, and cross culturally applicable instrument measuring how people manage stressful situations and stay well.
This pilot study was carried out to determine to what extent patients admitted to palliative care units (PCUs) in The Netherlands maintained good levels of individual quality of life (QoL), and to what extent response shift - a measure of adaptation - influenced QoL at the end of life. Two components of response shift were measured: reconceptualization (exchanging important areas of life) and value change (changing the perceived importance of important areas of life). Twenty patients admitted to PCUs were interviewed at one week, three weeks, and five weeks after admission. Results show that individual QoL was high and remained stable over the three measurement points. The individual QoL of patients who did not reconceptualize or did not change values was higher than the individual QoL of patients who did. The current pilot data need to be corroborated with data from additional respondents.
Quality of life (QoL) is now established as an important outcome for evaluating the impact of disease, and for assessing the efficacy of treatments. However, individuals change with time and the basis on which they make a QoL judgement may also change, a phenomenon increasingly referred to as response shift. Here, the individual may change his or her internal standards, values, and/or conceptualization on the target construct as a result of external factors such as a treatment or a change in health status. This has important implications for assessing the effects of treatments as a change in QoL may reflect a response shift, a treatment effect, or a complex combination of both. In this study, we used an individualised quality of life (IQoL) measure, the SEIQoL, together with a then-test to determine whether response shift would influence the measurement of treatment efficacy in edentulous patients.
Data are reported here for the first phase of a randomised controlled clinical trial designed to assess the impact, on IQoL, of implant supported dentures compared with high quality conventional dentures. IQoL was measured using the SEIQoL-DW in 117 patients (mean age 64.8; 32% male) at baseline (T1) and 3 months (T2) after receiving high quality conventional dentures. The work was carried out in dental teaching hospitals in Dublin and Belfast.
Unadjusted SEIQoL index scores revealed no significant impact of treatment at three months (baseline: 75.0; 3 months: 73.2, p = .33, n.s.). However, the then-test at 3 months revealed that patients retrospectively rated their baseline IQoL as significantly lower (P < .001) than they had rated it at the time (then-test baseline: 69.2). Comparison of the 3 month scores with this readjusted baseline indicated a significant treatment effect (then-test baseline: 69.2; 3 months: 73.2, p = 0.016). 81% of patients nominated at least one different IQoL domain at 3 months.
The positive impact of denture treatment for edentulous patients on IQoL was seen only when response shifts were taken into consideration. The nature of the response shifts was highly complex but the data indicated a degree of re-conceptualization and reprioritisation. Assessment of the impact of treatments using patient-generated reports must take account of the adaptive nature of patients.
The aim of this paper is to synthesise findings on the salutogenic concept, sense of coherence (SOC), and its correlation with quality of life (QoL). This study is descriptive and analytic, with a systematic integration of the contemporary knowledge base on the salutogenic research published in 1992-2003. This review includes 458 scientific publications and 13 doctoral theses on salutogenesis. In all, 32 papers had the main objective of investigating the relationship between SOC and QoL. This study is based on scientific publications in eight authorised databases, doctoral theses and available books. The SOC seems to have an impact on the QoL; the stronger the SOC, the better the QoL. Furthermore, longitudinal studies confirm the predictive validity of the SOC for a good QoL. The findings correspond to the core of the Ottawa Charter--that is, the process of enabling people to live a good life. Therefore, a certain possibility to modify and extend the health construct is becoming discernible, implicating a construct including salutogenesis and QoL. The SOC concept is a health resource, influencing QoL.
PURPOSE
We developed and validated a brief, yet sensitive, 33-item general cancer quality-of-life (QL) measure for evaluating patients receiving cancer treatment, called the Functional Assessment of Cancer Therapy (FACT) scale.
METHODS AND RESULTS
The five-phase validation process involved 854 patients with cancer and 15 oncology specialists. The initial pool of 370 overlapping items for breast, lung, and colorectal cancer was generated by open-ended interview with patients experienced with the symptoms of cancer and oncology professionals. Using preselected criteria, items were reduced to a 38-item general version. Factor and scaling analyses of these 38 items on 545 patients with mixed cancer diagnoses resulted in the 28-item FACT-general (FACT-G, version 2). In addition to a total score, this version produces subscale scores for physical, functional, social, and emotional well-being, as well as satisfaction with the treatment relationship. Coefficients of reliability and validity were uniformly high. The scale's ability to discriminate patients on the basis of stage of disease, performance status rating (PSR), and hospitalization status supports its sensitivity. It has also demonstrated sensitivity to change over time. Finally, the validity of measuring separate areas, or dimensions, of QL was supported by the differential responsiveness of subscales when applied to groups known to differ along the dimensions of physical, functional, social, and emotional well-being.
CONCLUSION
The FACT-G meets or exceeds all requirements for use in oncology clinical trials, including ease of administration, brevity, reliability, validity, and responsiveness to clinical change. Selecting it for a clinical trial adds the capability to assess the relative weight of various aspects of QL from the patient's perspective.
This is the first study to our knowledge to examine the relationship between happiness and longevity among a nationally representative sample of adults. We use the recently-released General Social Survey-National Death Index dataset and Cox proportional hazards models to reveal that overall happiness is related to longer lives among U.S. adults. Indeed, compared to very happy people, the risk of death over the follow-up period is 6% (95% CI 1.01-1.11) higher among individuals who are pretty happy and 14% (95% CI 1.06-1.22) higher among those who are not happy, net of marital status, socioeconomic status, census division, and religious attendance. This study provides support for happiness as a stand-alone indicator of well-being that should be used more widely in social science and health research.
Although sub-Saharan Africa suffers the greatest burden of progressive illness, there are few outcome measures with adequate properties to measure needs and outcomes.
To examine the psychometric properties of the FACIT-Pal among people receiving palliative care in three African countries.
Adult patients in South Africa, Kenya and Uganda gave self-report data to the core FACIT-G plus Pal subscale. Data were subjected to 1) Factor analysis, 2) corrected item-total correlations and 3) Cronbach's alpha for full scale and subscales.
The resulting four factors bear a strong similarity to the original FACT-G in our sample of 461: physical symptoms, functional wellbeing, friends and family, and emotional well-being. Cronbach's α for the full 27-item scale was 0.90 and for the Physical Well-Being, Social/Family Well-Being, Emotional Well-Being and Functional Well-Being subscales it was 0.83, 0.78, 0.80 and 0.87 respectively. Varimax rotation of the 19 item FACIT-Pal scale showed three clear, interpretable factors. Factor 1 a sense of purpose and meaning in life, Factor 2 physical symptoms, and Factor 3 social integration. For the 19 item FACIT- Pal, Cronbach's α was 0.81 and individual corrected item-total correlations ranged from 0.24 - 0.61. Cronbach's α for the eight items comprising Factor 1 (Meaning in Life) was 0.83. For the other two factors it was 0.70 (Physical Symptoms, 6 items) and 0.68 (Social Integration, 3 items).
The FACT-Pal is a reliable multidimensional scale for people with life-limiting, incurable diseases in sub-Saharan Africa, and the observed factors are interpretable and clinically meaningful.
Background:
Statistical analysis in palliative and end-of-life care research can be problematic due to high levels of missing data, attrition and response shift as disease progresses.
Aim:
To develop recommendations about managing missing data, attrition and response shift in palliative and end-of-life care research data.
Design:
We used the MORECare Transparent Expert Consultation approach to conduct a consultation workshop with experts in statistical methods in palliative and end-of-life care research. Following presentations and discussion, nominal group techniques were used to produce recommendations about attrition, missing data and response shift. These were rated online by experts and analysed using descriptive statistics for consensus and importance.
Results:
In total, 20 participants attended the workshop and 19 recommendations were subsequently ranked. There was broad agreement across recommendations. The top five recommendations were as follows: A taxonomy should be devised to define types of attrition. Types and amount of missing data should be reported with details of imputation methods. The pattern of missing data should be investigated to inform the imputation approach. A statistical analysis plan should be pre-specified in the protocol. High rates of attrition should be assumed when planning studies and specifying analyses. The leading recommendation for response shift was for more research.
Conclusions:
When designing studies in palliative and end-of-life care, it is recommended that high rates of attrition should not be seen as indicative of poor design and that a clear statistical analysis plan is in place to account for missing data and attrition.
A reliable and valid measure of the quality of the dying experience would help clinicians and researchers improve care for dying patients. To describe the validity of an instrument assessing the quality of dying and death using the perspective of family members after death and to identify clinical correlates of a high quality death, a retrospective cohort study evaluated the 31-item Quality of Dying and Death (QODD) questionnaire. The questionnaire was administered to family members of patients who died in Missoula county Montana in 1996 and 1997. The interview included questions assessing symptoms, patient preferences, and satisfaction with care. Measurement validity was examined for item and total scores and reliability analyses for the QODD total score were assessed. Construct validity was assessed using measures of concepts hypothesized to be associated with the quality of dying and death. There were 935 deaths, of which 252 (27.0%) family interviews were represented. Non-enrolled decedents were not significantly different from enrolled decedents on age, sex, cause of death, or location of death. We excluded sudden deaths (n = 45) and decedents under age 18 (n = 2), leaving 205 after-death interviews. A total QODD score, on a scale from 0 to 100 with higher scores indicating better quality, ranged from 26.0 to 99.6, with a mean of 67.4 and Cronbach's alpha of 0.89. The total QODD score was not associated with patient age, sex, education, marital status, or income. As hypothesized, higher QODD scores were significantly associated with death at home (P < 0.01), death in the location the patient desired (P < 0.01), lower symptom burden (P < 0.001), and better ratings of symptom treatment (P< 0.01). Although the total score was not associated with the presence of an advance directive, higher scores were associated with communication about treatment preferences (P < 0.01), compliance with treatment preferences (P < 0.001), and family satisfaction regarding communication with the health care team (P < 0.01). Availability of a health care team member at night or on weekends was also associated with a higher QODD score (P < 0.001). The QODD total score demonstrated good cross-sectional validity. Clinicians caring for dying patients should focus on improving communication with the patient and family and improving symptom assessment and treatment. Health care teams should focus on continuity of care, including having a team member familiar with the patient available for calls at nights and on weekends. Future work will assess the potential role of the QODD in improving the quality of the dying experience.
Studies of the factor structure of the SF-36 Health Survey are an important step in its construct validation. Its structure is also the psychometric basis for scoring physical and mental health summary scales, which are proving useful in simplifying and interpreting statistical analyses. To test the generalizability of the SF-36 factor structure, product-moment correlations among the eight SF-36 Health Survey scales were estimated for representative samples of general populations in each of 10 countries. Matrices were independently factor analyzed using identical methods to test for hypothesized physical and mental health components, and results were compared with those published for the United States. Following simple orthogonal rotation of two principal components, they were easily interpreted as dimensions of physical and mental health in all countries. These components accounted for 76% to 85% of the reliable variance in scale scores across nine European countries, in comparison with 82% in the United States. Similar patterns of correlations between the eight scales and the components were observed across all countries and across age and gender subgroups within each country. Correlations with the physical component were highest (0.64 to 0.86) for the Physical Functioning, Role Physical, and Bodily Pain scales, whereas the Mental Health, Role Emotional, and Social Functioning scales correlated highest (0.62 to 0.91) with the mental component. Secondary correlations for both clusters of scales were much lower. Scales measuring General Health and Vitality correlated moderately with both physical and mental health components. These results support the construct validity of the SF-36 translations and the scoring of physical and mental health components in all countries studied.
Objective:
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.
Methods:
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.
Results:
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.
Conclusion:
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.
Financial/nonfinancial disclosures: The authors have reported to CHEST that no potential conflicts of interest exist with any companies/organizations whose products or services may be discussed in this article.
Funding/Support: This work was supported by the National Institute of Nursing Research [R01NR05226].
Reproduction of this article is prohibited without written permission from the American College of Chest Physicians. See online for more details.
As different definitions for PC have been used across the last three decades, a common terminology is lacking. To ensure quality of care, (a) a consensus on outcome criteria and indicators and (b) validated and applicable outcome assessment instruments are necessary. The aim of this study is to systematically review instrument for outcome assessment that have been used or proposed for research and clinical practice in palliative care.
A systematic literature search in electronic databases Cinahl, MEDLINE, EMBASE, and PsychoINFO until December 2009 was conducted to identify articles describing outcome assessment in palliative care. Following extraction of relevant publications, the outcome assessment instruments were categorized in outcome domains and target groups.
The literature search resulted in 8,607 hits. Deduplication and exclusion of irrelevant or unavailable publications allowed for 725 publications which were analyzed in detail. At least 528 different outcome assessment instruments were applied. Four target groups were identified: patients, family members, staff members, and the health care system. Fifteen patient domains were identified: quality of life, quality of care, symptoms and problems, performance status, psychological symptoms, decision-making and communication, place of death, stage of disease, mortality and survival, distress and wish to die, spirituality and personality, disease-specific outcomes, clinical features, meaning in life, and needs. The majority of instruments were found only in single cases and a minority of instruments were validated. Validated instruments were used more often.
The wide scope of existing instruments makes consensus on a universal set of instruments for outcome assessment in palliative care improbable. A framework with a set of appropriate instruments could help (1) to harmonize the variety of tools used in research and clinical practice, (2) to allow for more comparability, and (3) to define gaps were tools maybe missing and should be developed.
Shorter quality-of-life (QoL) assessments are beneficial for palliative patients as they reduce burden associated with completing personal, and at times stressful, questionnaires. The European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative (QLQ-C15-PAL) and the Functional Assessment of Chronic Illness Therapy - Palliative Care (FACIT-Pal) are two palliative QoL tools that have been validated for use in this population. The purpose of this article was to conduct a review of studies utilizing these two palliative-specific QoL instruments, their development and their relative strengths for use in advanced cancer patients. Studies detailing the development process for the QLQ-C15-PAL and the FACIT-Pal were identified. A comparison between both questionnaires in terms of development, characteristics, validation and use was conducted. The QLQ-C15-PAL was developed via structured shortening of the longer core instrument, the Quality of Life Questionnaire Core 30 (QLQ-C30), whereas the FACIT-Pal includes the Functional Assessment of Cancer Therapy - General tool plus a new 19-item palliative scale created through interviews with patients and healthcare professionals. Although significant overlap exists between both tools, there is a marked difference in the aspects of QoL assessed. Scoring, organization and item format are different; however, response options and recall period are the same. Both tools cover the core items relevant to patients with advanced cancers and can be supplemented with disease-specific tools. Both QLQ-C15-PAL and FACIT-Pal allow for assessment of QoL issues specific to patients with advanced diseases. Each instrument has unique strengths and weaknesses and choice between these tools is dependent on the investigator and study needs. Future studies should directly compare these two tools and validate their use through a number of administration modes.
The construct "meaning in life" (MiL) has recently raised the interest of clinicians working in psycho-oncology and end-of-life care and has become a topic of scientific investigation.
The aim of this study was to compare MiL in palliative care (PC) patients with a representative sample of the German population.
In this cross-sectional study, all PC patients treated in the PC inpatient unit and through the PC consult service at Ludwig-Maximilians-University Hospital, Munich, from May 2005 to July 2007 were eligible to participate. Patients were interviewed by a doctoral student, psychologist, or physician, all previously trained to administer the Schedule for Meaning in Life Evaluation (SMiLE) in a standardized way. In the SMiLE, respondents first list individual areas that provide meaning to their life before rating their current level of importance and satisfaction with each area. Overall indices of weighting (IoW, range 20-100), satisfaction (IoS, range 0-100), and weighted satisfaction (IoWS, range 0-100) are calculated.
One hundred PC patients completed the SMiLE: the IoS was 70.2 ± 19.7, the IoW was 84.7 ± 11.5, and the IoWS was 72.0 ± 19.4. The representative sample (n=977) scored significantly higher in the IoS (82.8 ± 14.7) and IoWS (83.3 ± 14.8) but not in the IoW (85.6 ± 12.3). Compared with healthy individuals, PC patients are more likely to list partner, friends, leisure, spirituality, well-being, nature/animals, and pleasure as meaningful areas. Examining the satisfaction ratings, it is noteworthy that PC patients' satisfaction scores are fairly high (and not lower than their healthy counterparts') in a number of domains: family, partner, home/garden, spirituality, and finances. On the other hand, they score significantly lower in nature/animals, leisure, friends, well-being, altruism, work, pleasure, and health.
These findings underscore the potential of the SMiLE for identifying areas that are particularly important to individuals, and that can be targeted by the PC team to improve overall life satisfaction at the end of life.
To determine whether modern medicine is facilitating 'good' deaths, appropriate measures of the quality of dying and death must be developed and utilized. The purpose of this paper is to identify quality of dying and death measurement tools and to determine their quality. MEDLINE (1950-2008), Healthstar (1966-2008), and CINAHL (1982-2008) were searched using keyword terms 'quality of dying/death' and 'good/bad death'. Papers that described a quality of dying and death measure or that aimed to measure the quality of dying and death were selected for review. The evaluation criteria included a description of the measure development (validated or ad hoc), the provision of a definition of quality of dying and death, an empirical basis for the measure, the incorporation of multiple domains and the subjective nature of the quality of dying and death construct, and responsiveness to change. Eighteen measures met the selection criteria. Six were published with some description of the development process and 12 were developed ad hoc. Less than half were based on an explicit definition of quality of dying and death and even fewer relied on a conceptual model that incorporated multidimensionality and subjective determination. The specified duration of the dying and death phase ranged from the last months to hours of life. Of the six published measures reviewed, the Quality of Dying and Death questionnaire (QODD) is the most widely studied and best validated. Strategies to measure the quality of dying and death are becoming increasingly rigorous. Further research is required to understand the factors influencing the ratings of the quality of dying and death.
Quality of life (QoL) assessment is becoming increasingly important for measuring the impact of illnesses, diseases, and their treatment and for deciding priorities when allocating resources. We developed a novel method to measure QoL from the perspective of the individual patient. The schedule for the evaluation of individual quality of life (SEIQoL) was devised from the technique known as judgment analysis to measure patients' level of functioning in five self-nominated facets of life and the relative weight or importance attached to these areas. We applied this method, together with traditional measures of health status, in a prospective intervention study of 20 patients undergoing unilateral total hip-replacement surgery with six-month follow-up by comparison with matched, non-patient controls. Health status was significantly improved by hip replacement on the McMaster health index questionnaire (p less than 0.001) and the arthritis impact measurement scales (p less than 0.001). Individually measured QoL was significantly increased after surgery when measured by SEIQoL (p less than 0.02). The individual nature of QoL was reflected in the variety of life areas nominated as important by individual patients, the differences in relative weights attached to these areas, and the complex nature of the changes that occurred postoperatively. Our data not only highlight such individuality but also show that SEIQoL provides a means by which this can be assessed scientifically.
Quality of life is a difficult concept to define and to measure. An hypothesis is proposed which suggests that the quality of life measures the difference, or the gap, at a particular period of time between the hopes and expectations of the individual and that individual's present experiences. Quality of life can only be described by the individual, and must take into account many aspects of life. The approach is goal-orientated, and one of task analysis. The hypothesis is developed in a diagramatic way, and several methods of testing the hypothesis suggested.
A model of quality of life is proposed that integrates objective and subjective indicators, a broad range of life domains, and individual values. It takes account of concerns that externally derived norms should not be applied without reference to individual differences. It also allows for objective comparisons to be made between the situations of particular groups and what is normative. Considerable agreement exists that quality of life is multidimensional. Coverage may be categorised within five dimensions: physical wellbeing, material wellbeing, social wellbeing, emotional wellbeing, and development and activity. A research agenda is discussed as are the particular problems caused by difficulties in understanding and communicating.
Previous work of the author presents a salutogenic theoretical model designed to explain maintenance or improvement of location on a health ease/dis-ease continuum. The model's core construct, the Sense of Coherence (SOC), was consciously formulated in terms which are thought to be applicable crossculturally. The SOC scale which operationalizes the construct is a 29-item semantic differential questionnaire, its design guided by Guttman's facet theory. A 13-item version of the scale has also been used. The purpose of the present paper is to present the extant evidence from studies conducted in 20 countries for the feasibility, reliability and validity of the scale, as well as normative data. In 26 studies using SOC-29 the Cronbach alpha measure of internal consistency has ranged from 0.82 to 0.95. The alphas of 16 studies using SOC-13 range from 0.74 to 0.91. The relatively few test-retest correlations show considerable stability, e.g. 0.54 over a 2-year period among retirees. The systematic procedure used in scale construction and examination of the final product by many colleagues points to a high level of content, face and consensual validity. The few data sets available point to a high level of construct validity. Criterion validity is examined by presenting correlational data between the SOC and measures in four domains: a global orientation to oneself and one's environment (19 r's); stressors (11 r's); health, illness and wellbeing (32 r's); attitudes and behavior (5 r's). The great majority of correlations are statistically significant. All available published normative data on SOC-29 and SOC-13 are presented, data which bear upon validity using the known groups technique.(ABSTRACT TRUNCATED AT 250 WORDS)
Studies of the factor structure of the SF-36 Health Survey are an important step in its construct validation. Its structure is also the psychometric basis for scoring physical and mental health summary scales, which are proving useful in simplifying and interpreting statistical analyses. To test the generalizability of the SF-36 factor structure, product-moment correlations among the eight SF-36 Health Survey scales were estimated for representative samples of general populations in each of 10 countries. Matrices were independently factor analyzed using identical methods to test for hypothesized physical and mental health components, and results were compared with those published for the United States. Following simple orthogonal rotation of two principal components, they were easily interpreted as dimensions of physical and mental health in all countries. These components accounted for 76% to 85% of the reliable variance in scale scores across nine European countries, in comparison with 82% in the United States. Similar patterns of correlations between the eight scales and the components were observed across all countries and across age and gender subgroups within each country. Correlations with the physical component were highest (0.64 to 0.86) for the Physical Functioning, Role Physical, and Bodily Pain scales, whereas the Mental Health, Role Emotional, and Social Functioning scales correlated highest (0.62 to 0.91) with the mental component. Secondary correlations for both clusters of scales were much lower. Scales measuring General Health and Vitality correlated moderately with both physical and mental health components. These results support the construct validity of the SF-36 translations and the scoring of physical and mental health components in all countries studied.
Data from general population samples in 11 countries (n = 1483 to 9151) were used to assess data quality and test the assumptions underlying the construction and scoring of multi-item scales from the SF-36 Health Survey. Across all countries, the rate of item-level missing data generally was low, although slightly higher for items printed in the grid format. In each country, item means generally were clustered as hypothesized within scales. Correlations between items and hypothesized scales were greater than 0.40 with one exception, supporting item internal consistency. Items generally correlated significantly higher with their own scale than with competing scales, supporting item discriminant validity. Scales could be constructed for 93-100% of respondents. Internal consistency reliability of the eight SF-36 scales was above 0.70 for all scales, with two exceptions. Floor effects were low for all except the two role functioning scales; ceiling effects were high for both role functioning scales and also were noteworthy for the Physical Functioning, Bodily Pain, and Social Functioning scales in some countries. These results support the construction and scoring of the SF-36 translations in these 11 countries using the method of summated ratings.
Despite the increasing importance of assessing quality of life (QoL) in patients with advanced cancer, relatively little is known about individual patient's perceptions of the issues contributing to their QoL. The Schedule for the Evaluation of Individual Quality of Life (SEIQoL) and the shorter SEIQoL-Direct Weighting (SEIQoL-DW) assess individualized QoL using a semistructured interview technique. Here we report findings from the first administration of the SEIQoL and SEIQoL-DW to patients with advanced incurable cancer.
QoL was assessed on a single occasion using the SEIQoL and SEIQoL-DW in 80 patients with advanced incurable cancer.
All patients were able to complete the SEIQoL-DW, and 78% completed the SEIQoL. Of a possible score of 100, the median QoL global score was as follows: SEIQoL, 61 (range, 24 to 94); SEIQoL-DW, 60.5 (range, 6 to 95). Psychometric data for SEIQoL indicated very high levels of internal consistency (median r =.90) and internal validity (median R(2) = 0.88). Patients' judgments of their QoL were unique to the individual. Family concerns were almost universally rated as more important than health, the difference being significant when measured using the SEIQoL-DW (P =.002).
Patients with advanced incurable cancer were very good judges of their QoL, and many patients rated their QoL as good. Judgments were highly individual, with very high levels of consistency and validity. The primacy given to health in many QoL questionnaires may be questioned in this population. The implications of these findings are discussed with regard to clinical assessment and advance directives.
This study examined the hypothesis that patients' persistence in comparing themselves with others who are perceived as being worse off might induce a response shift in self-reported quality of life (QL). Specifically, we tested whether patients' ratings of how they are doing compared to others (i.e., relative evaluation) moderates the link between physical deterioration and decline in self-reported QL. Two hundred forty patients with various cancer diagnoses who were undergoing palliative chemotherapy rated their physical functioning and QL (i.e., emotional functioning and global quality of life) twice with an interval of 3 months. In addition, a significant other and a research assistant rated the physical condition of the patients. Consistent with the buffering model of response shift, patients who felt that they were better off than others appeared to be able to sustain their quality of life in the face of a worsening physical condition. In contrast, those who felt the same or worse off than others could not.
A reliable and valid measure of the quality of the dying experience would help clinicians and researchers improve care for dying patients. To describe the validity of an instrument assessing the quality of dying and death using the perspective of family members after death and to identify clinical correlates of a high quality death, a retrospective cohort study evaluated the 31-item Quality of Dying and Death (QODD) questionnaire. The questionnaire was administered to family members of patients who died in Missoula county Montana in 1996 and 1997. The interview included questions assessing symptoms, patient preferences, and satisfaction with care. Measurement validity was examined for item and total scores and reliability analyses for the QODD total score were assessed. Construct validity was assessed using measures of concepts hypothesized to be associated with the quality of dying and death. There were 935 deaths, of which 252 (27.0%) family interviews were represented. Non-enrolled decedents were not significantly different from enrolled decedents on age, sex, cause of death, or location of death. We excluded sudden deaths (n = 45) and decedents under age 18 (n = 2), leaving 205 after-death interviews. A total QODD score, on a scale from 0 to 100 with higher scores indicating better quality, ranged from 26.0 to 99.6, with a mean of 67.4 and Cronbach's alpha of 0.89. The total QODD score was not associated with patient age, sex, education, marital status, or income. As hypothesized, higher QODD scores were significantly associated with death at home (P < 0.01), death in the location the patient desired (P < 0.01), lower symptom burden (P < 0.001), and better ratings of symptom treatment (P< 0.01). Although the total score was not associated with the presence of an advance directive, higher scores were associated with communication about treatment preferences (P < 0.01), compliance with treatment preferences (P < 0.001), and family satisfaction regarding communication with the health care team (P < 0.01). Availability of a health care team member at night or on weekends was also associated with a higher QODD score (P < 0.001). The QODD total score demonstrated good cross-sectional validity. Clinicians caring for dying patients should focus on improving communication with the patient and family and improving symptom assessment and treatment. Health care teams should focus on continuity of care, including having a team member familiar with the patient available for calls at nights and on weekends. Future work will assess the potential role of the QODD in improving the quality of the dying experience.
The interpretability of changes in perceived health status over time is threatened if people experience a response shift. This study assessed whether the recovery process following stroke altered individuals' perceptions of past health status and the impact that change in internal standards (response shift) had on ratings over time. We hypothesized that individuals with stroke would experience changes in internal standards, not experienced by the control group. Two other hypotheses related to objective criterion measures also were tested.
Individuals were recruited through a randomized trial of acute poststroke care. Health status was evaluated at baseline (within the first week poststroke), 6 and 24 weeks later using the EQ VAS. At 6 and 24 weeks, subjects were asked to retrospectively re-evaluate their health status for the preceding evaluation using the then test technique.
The pattern of mean scores was indicative of changes in internal standards among individuals with stroke but not for the control group. Memory had an impact on estimates of response shift. Hypotheses related to the objective criterion measures were not supported.
The results suggest that there was a change in internal standards, and that measures of improvement in health status are different based on prospective as compared to retrospective ratings. Further understanding of the impact of recall on the assessment of response shift using the then test is needed to validate the use of this technique.
During the last decade, a paradigm shift has emerged in the measurement of quality of life, from the use of standard questionnaires towards a more individualized approach. Therefore, this study examined individual quality of life in adults with congenital heart disease and explored potential differences with those reported by matched, healthy control subjects.
We examined 579 adults with congenital heart disease. A subsample of 514 of these patients was matched for age, gender, educational level, and employment status with 446 healthy counterparts. Individual quality of life was assessed using the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW). Twelve domains affecting patients' quality of life were identified. Family, job/education, friends, health, and leisure time were the most prominent quality of life domains. Significantly fewer patients than control subjects considered financial means and material well-being and future to be important determinants of quality of life.
Assessment of quality of life in adults with congenital heart disease that focusses on the individual is appropriate for obtaining in-depth information on issues relevant for patients' quality of life. This represents a paradigm shift in the measurement of this concept.
This study aimed at developing a shortened version of the EORTC QLQ-C30, one of the most widely used health-related quality of life questionnaires in oncology, for palliative care research. The study included interviews with 41 patients and 66 health care professionals in palliative care to determine the appropriateness, relevance and importance of the various domains of the QLQ-C30. Item response theory methods were used to shorten scales. Patients and health care professionals rated pain, physical function, emotional function, fatigue, global health status/quality of life, nausea/vomiting, appetite, dyspnoea, constipation, and sleep as most important. Therefore, these scales/items were retained in the questionnaire. Four scales were shortened without reducing measurement precision. Important dimensions not covered by the questionnaire were identified. The resulting 15-item EORTC QLQ-C15-PAL is a 'core questionnaire' for palliative care. Depending on the research questions, it may be supplemented by additional items, modules or questionnaires.