A New Italian Questionnaire to Assess Caregivers of Cancer Patients' Satisfaction With Palliative Care: Multicenter Validation of the Post Mortem Questionnaire-Short Form

ContextCaregiver satisfaction with palliative care is a crucial indicator of its effectiveness. In light of the lack of validated or reliable Italian instruments, the Post Mortem Questionnaire-Short Form (QPM-SF), a self-report questionnaire, has been developed to assess home and inpatient hospice care.ObjectivesThe present study was designed to evaluate the psychometric properties of QPM-SF and assess for differences in quality of palliative care between hospice and home care settings.MethodsA total of 584 caregivers of terminal cancer patients completed QPM-SF one month after the death of the care recipient. To assess test-retest reliability, a subgroup of 50 caregivers completed the questionnaire a second time, one month later.ResultsQPM-SF showed good internal consistency and temporal stability and a four-factor structure: “Integrated home care,” “Hospice,” “Physical care-Information-Global evaluation,” and “Needs.”ConclusionQPM-SF may be considered a valid, reliable, and well-accepted self-report instrument for examining and implementing palliative care interventions.     

It just didn't work: the realities of quality assessment in the English health care context

AIMS: Assessment of care quality is integral to health and palliative care provision and there is a need to develop and implement outcome measures to assess quality. This study aimed to: (1) describe the implementation of a palliative care outcome measure in non-specialist palliative care settings and (2) to understand the implementation of the measure. METHOD: Twenty-five non-specialist palliative care settings were purposely sampled and invited to implement a palliative care outcome measure. Fifteen settings agreed to take part. The research team provided training and support in the use of the measure. Data were collected on actual use of the measure and, via interviews with patients and nurses, on their experiences. RESULTS: The number of assessments was low (21 patients assessed against an anticipated minimum of 240). The analysis of nurses' accounts identified important considerations in understanding the low response. Although nurses saw the implementation of the outcome measure as bringing opportunities for themselves, including their own professional development, and for the organisations they represent, including raising organisational profiles, there were a number of factors that acted as impediments. These include: perceived time to administer the paperwork; competence and confidence in recruiting patients and proceeding with informed consent; concerns about the effects of completing the measure with very ill patients; and the effects of nurses raising palliative care issues on their relationships with patients. CONCLUSIONS: It is difficult to integrate outcome measures into routine clinical practice. Future interventions should consider how to tailor the implementation of outcome measures within existing working structures and provide education and training to enable nurses to deal with potentially sensitive palliative care issues.     

Nutritional intervention and quality of life in palliative care patients

Quality of life measures can be used by health professionals to assess effectiveness of nutritional interventions administered to palliative care patients. Stabilizing, maintaining and attempting to increase weight in palliative care patients through the support of oral feeding, and provision of artificial feeding, has been shown to mediate the metabolic and physical wasting effects of the disease process and improve general comfort. A quality of life instrument is a multi-dimensional questionnaire that health professionals can use to measure domains relating to physical, psychological and social aspects of living, and health and disease outcomes. There are three instruments specifically designed to assess quality of life in patients receiving palliative care. These are: The Palliative Care Quality of life Instrument, The Assessment of Quality of Life at the End of Life (AQEL), and The Spitzer Quality of Life Index (SQLI). General use quality of life measures are multifaceted; however, for use with palliative care patients, they have added dimensions of spirituality, existential issues (purpose and meaning of life), family members' perceptions of quality of care, symptom control and family support. Use of quality of life scales provides health professionals and organizations with an ideal measure for planning, targeting and evaluating health interventions.     

How can occupational therapists measure outcomes in palliative care?

The objective of this paper is to identify an outcome measure for occupational therapy interventions with palliative clients, in particular Home Assessments. Several possibilities beyond traditional functional measures are considered, and the notion of quality of life (QoL) as a potential measure and routine part of assessment is discussed.A systematic literature search resulted in 45 QoL tools that might be suitable for palliative care. The validation or development papers for these tools were closely examined. Twenty-four instruments met the inclusion criteria for further consideration for use by occupational therapists.The research found that it may be feasible for occupational therapists to use a QoL tool as a routine part of assessing each palliative patient, with the objective of focusing interventions to priority areas identified by the patient. Further work in this area will identify a range of established and validated methods of assessing QoL, suitable for different stages within the palliative phase of illness for purposes including assessment, support and targeted interventions.     

Outcome assessment instruments in palliative and hospice care—a review of the literature

Background

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.

Method

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.

Results

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.

Conclusions

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.     

Development and Validation of the QUALI-PALLI-FAM Questionnaire for Assessing Relatives' Perception of Quality of Inpatient Palliative Care: A Prospective Cross-Sectional Survey

ContextRelatives of patients receiving palliative care are at risk for psychological and physical distress, and their perception of quality of care can influence patients' quality of life.ObjectivesThe purpose of this study was to develop and validate the QUALI-PALLI-FAM questionnaire (QUAlity of PALLIative car from FAMilies' perspective) to measure families' perception of and satisfaction with palliative care.MethodsAn exploratory factor analysis was conducted, and we evaluated the questionnaire's internal consistency using Cronbach's alpha, its stability across various strata, and the correlation between the QUALI-PALLI-FAM (factors, total score, and global satisfaction) and the total score of the FAMCARE (FAMily satisfaction with CARE) questionnaire.ResultsThis multicentric prospective cross-sectional survey was conducted in seven French hospitals, namely, three palliative care units and four standard medical units with a mobile palliative care team. The questionnaire was completed by 170 relatives of patients (more than 90% of patients had advanced cancer). The final questionnaire included 14 items across three domains: organization of care and availability of caregivers, medical information provision, and confidence and involvement of relatives. Internal consistency was good for all subscales (Cronbach's α = 0.74–0.86). Our questionnaire was stable across various strata: age and gender (patients and relatives), Palliative Performance Scale scores, and care settings. The QUALI-PALLI-FAM total score was correlated with the total FAMCARE score.ConclusionThe QUALI-PALLI-FAM appears to be a valid, reliable, and well-accepted tool to explore relatives' perception of quality of inpatient palliative care and complements the QUALI-PALLI-PAT questionnaire. Further testing is required in various settings and countries.     

Assessing physical functioning: a systematic review of quality of life measures developed for use in palliative care

BACKGROUND: Physical decline is experienced by all palliative care patients and affects most aspects of life. Physical functioning (PF) is therefore a crucial domain for quality of life (Qol) assessments. The purpose of this study was to review how PF assessments are performed in Qol instruments developed for palliative care METHODS: For identification of instruments, Medline searches up to April 2005 were performed using the terms (palliative care OR end of life care OR terminal care) AND quality of life AND (assessment OR instrument OR questionnaire). A total of 1326 hits were screened. Named QoL instruments were extracted from 240 abstracts and 46 relevant reports. Items assessing PF were then identified and classified according to activity domains as described by the WHO International Classification of Functioning Disability and Health. RESULTS: Of 224 different instruments detected, 39 were identified as developed for palliative care. Of these, 11 included original PF assessments. Two were comprehensive performance status measures made for staff assessment, 9 were multidimensional tools including 2-7 PF items. The content and phrasing of items varied considerably. All instruments included some aspects of self-care, whereas the coverage of mobility, domestic, work--and leisure activities was inconsistent. INTERPRETATION: Despite its importance, PF assessment seems to be a minor part of palliative care QoL instruments. Clear definitions and conceptualization of PF are needed, as well as a consensus on relevant aspects to include in improved instruments. Performance scales already developed should be further explored with regard to content, validity and psychometric properties.     

Development and Preliminary Testing of the Quality of Spiritual Care Scale

ContextThe provision of spiritual care is considered a key element of hospice and palliative care, but there is a paucity of empirically developed quality-of-care measures in this domain.ObjectivesTo describe the development and reliability and validity of the Quality of Spiritual Care (QSC) scale in family caregivers.MethodsWe conducted analyses of interviews conducted that included the QSC scale with family members of residents who died in long-term care settings taken after the resident had died. To determine reliability and validity of the QSC scale, we examined internal consistency, concurrent construct validity, and factor analysis with promax rotation.ResultsOf 165 family caregivers of decedents who were asked whether they received spiritual care, 91 (55%) responded yes, and 89 of these (98%) completed at least 80% of the QSC items. Two items (i.e., satisfaction with and value of spiritual care) were perfectly correlated so the latter item was dropped in scale development. Factor analysis identified two factors, personal spiritual enrichment (mean pattern matrix loading = 0.77) and relationship enrichment (mean pattern matrix loading = 0.72). Reliability analysis yielded a Cronbach's alpha of 0.87, and item-total correlations for all items were in excess of 0.55. Preliminary validity of the QSC was supported by significant and expected correlations in both direction and magnitude with items from validated instruments conceptually associated with the quality of spiritual care.ConclusionPreliminary testing of the QSC scale suggests that it is a valid and reliable outcome measure of the quality of spiritual care at the end of life.     

Measuring fatigue in patients with cancer

 Our current state of knowledge of the fatigue experiencd by patients with cancer is limited, and further development is hampered by the definitions of fatigue, which remain numerous, inconsistent, and varied according to the discipline of the author and the nature of the research. It is fairly well established within the healthcare literature that it is multidimensional in nature. This has implications for the reliable and valid assessment of this phenomenon. There are a number of instruments currently available with which to measure cancer-related fatigue. These include instruments developed for use initially with healthy populations, such as airmen and workers engaged in manual and clerical work. However, cancer-specific fatigue assessment instruments are now available, and are preferable to those instruments developed without reference to this patient group. Fatigue is often found as a single item or scale in self-report measures of symptoms, mood and functional status reflecting the effect of fatigue and the interaction of fatigue with other symptoms or concepts related to quality of life. Factors to be considered in selecting a measure of fatigue for research will be outlined, and recommendations for the future development and validation of useful and scientifically credible measures of fatigue made.     

Quality of life in palliative care: An analysis of quality-of-life assessment

Abstract

The principal aim of palliative care is to improve patients' quality of life. This is more complicated than it seems. There is no generally accepted way to assess quality of life. Through an extensive literature research multiple instruments were found. Of these, four were chosen to be examined further (Schedule for the Evaluation of Individual Quality of Life – Direct Weighting (SEIQoL-DW), European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire – Core 15 – of Palliative Care (EORTC QLQ-C15-PAL), Rotterdam Symptom Checklist (RSCL), and Palliative Care Outcome Scale (POS)). These were used with patients in a German palliative care ward. Staff and patients were interviewed on their understanding of quality of life and its assessment. The results of literature research, interviews, and application of the instruments were then collated and critically evaluated. It became obvious that a deliberate choice of an instrument has a great impact on practicability and outcome in a clinical setting. The EORTC QLQ-C15-PAL seems particularly useful for (international) studies; it leads to clear and easily comparable results. For routine use in clinical palliative care, however, it seems too impersonal to represent more than a rough idea of patients' actual quality of life. Applying the RSCL, the researcher could gain a basic overview of symptoms and psychological condition of his patients – even though it seems too rigid to allow a deeper insight in quality of life. The POS offers additional insight via an open question and a staff questionnaire. This could provide particularly helpful information for clinical routine – provided patients can cope with its more complex format. The SEIQoL-DW seems to be best suited for use in a clinical situation even though its use can be challenging for both researcher and patient. Assessment requires both parties to interact directly, which seems to have a beneficial impact on relationship and communication. It is the most flexible assessment instrument of those analysed here and therefore seems to be best suited to investigate such a complex matter as quality of life.     

Assessing the quality of preparation for posthospital care from the patient's perspective: the care transitions measure

BACKGROUND: Evidence that both quality and patient safety are jeopardized for patients undergoing transitions across care settings continues to expand. Performance measurement is one potential strategy towards improving the quality of transitional care. A valid and reliable self-report measure of the quality of care transitions is needed that is both consistent with the concept of patient-centeredness and useful for the purpose of performance measurement and quality improvement. OBJECTIVE: We sought to develop and test a self-report measure of the quality of care transitions that captures the patient's perspective and has demonstrated utility for quality improvement. SUBJECTS: Patients aged 18 years and older discharged from one of the 3 hospitals of a vertically integrated health system were included. RESEARCH DESIGN: Cross-sectional assessment of factor structure, dimensionality, and construct validity. RESULTS: The Care Transitions Measure (CTM), a 15-item uni-dimensional measure of the quality of preparation for care transitions, was found to have high internal consistency, reliability, and reflect 4 focus group-derived content domains. The measure was shown to discriminate between patients discharged from the hospital who did and did not have a subsequent emergency department visit or rehospitalization for their index condition. CTM scores were significantly different between health care facilities known to vary in level of system integration. CONCLUSIONS: The CTM not only provides meaningful, patient-centered insight into the quality of care transitions, but because of the association between CTM scores and undesirable utilization outcomes, it also provides information that may be useful to clinicians, hospital administrators, quality improvement entities, and third party payers.     

Bereavement

The terminally ill person's quality of life (QoL) is the principal focus and intended outcome of palliative care, the raison d'être of palliative care interventions, and always of concern to the client. Palliative care case managers are encouraged to assess and/or measure this QoL to support clinical decision making, but little agreement exists about how to conceptualise QoL unambiguously. This is reflected in tool design. There is agreement that a terminally ill person's QoL must include subjective and multidimensional characteristics. Therefore we offer for consideration a QoL Client Generated Index tool (CGI) suitable for multiple settings and developed with both subjectivity and multidimensionality intrinsic to the design. The tool is discussed in context of a literature review and with reference to a recent trial in palliative care where it was compared for usefulness and feasibility to the McGill Quality of Life questionnaire.     

Putting patient and family voice back into measuring quality of care for the dying

Quality of care and quality of life change substantially for those with a serious chronic illness and nearing the end of their lives. As one dies, life takes on new shape-values change and things once ignored become more important. Existing quality of care measures do not attend to the changes in priorities or to dimensions that acquire new significance (e.g., Spirituality and transcendence). An important impediment to addressing the inadequacies in the evidence base for palliative care, improving shortcomings of care, and holding institutions or health care systems accountable for the quality of care is the lack of valid and reliable measurement tools. In this article, an overview is presented of an ongoing research effort to develop measurement tools which will utilize the patient and family perspective to measure the quality of care.     

Validation of the Missoula-Vitas Quality-of-Life Index among patients with advanced AIDS in urban Kampala, Uganda

The Missoula-Vitas Quality-of-Life Index (MVQOLI) is a unique tool specifically designed to measure quality of life (QOL) in advanced illness in a palliative care setting. The aim of this study was to explore its cross-cultural validity. We used a culturally adapted version in a local language, Luganda, and tested the MVQOLI-M in 200 patients with advanced AIDS in urban Kampala, Uganda. Content validity was assessed using the content validity ratio approach. Reliability was assessed using Cronbach's alpha (alpha), and test-retest reliability was evaluated using the intraclass correlation coefficient. All items and domains were rated content valid and there was good construct validity. The instrument demonstrated good internal consistency (alpha=0.83). The transcendence domain was the best predictor of overall QOL. The MVQOLI-M is an acceptable, valid, and reliable measure of QOL for people with advanced AIDS and findings demonstrate the importance of measuring the transcendence domain in QOL in advanced illness.     

A cluster randomized trial of a primary palliative care intervention (CONNECT) for patients with advanced cancer: Protocol and key design considerations

BackgroundThe addition of specialty palliative care to standard oncology care improves outcomes for patients with advanced cancer and their caregivers, but many lack access to specialty care services. Primary palliative care—meaning basic palliative care services provided by clinicians who are not palliative care specialists—is an alternative approach that has not been rigorously evaluated.MethodsA cluster randomized, controlled trial of the CONNECT (Care management by Oncology Nurses to address supportive care needs) intervention, an oncology nurse-led care management approach to providing primary palliative care for patients with advanced cancer and their family caregivers, is currently underway at 16 oncology practices in Western Pennsylvania. Existing oncology nurses are trained to provide symptom management and emotional support, engage patients and families in advance care planning, and coordinate appropriate care using evidence-based care management strategies. The trial will assess the impact of CONNECT versus standard oncology care on patient quality of life (primary outcome), symptom burden, and mood; caregiver burden and mood; and healthcare resource use.DiscussionThis trial addresses the need for more accessible models of palliative care by evaluating an intervention led by oncology nurses that can be widely disseminated in community oncology settings. The design confronts potential biases in palliative care research by randomizing at the practice level to avoid contamination, enrolling patients prior to informing them of group allocation, and conducting blinded outcome assessments. By collecting patient, caregiver, and healthcare utilization outcomes, the trial will enable understanding of the full range of a primary palliative care intervention's impact.     

Registered nurses’ knowledge,attitudes and beliefs about end-of-life care in non-specialist palliative care settings: A mixed studies review

AimThe aim of this study was to describe, evaluate and synthesise the literature on registered nurses’ knowledge, attitudes and beliefs towards end-of-life care in adult non-specialist palliative care settings.BackgroundLittle is known about the knowledge, attitudes and beliefs of Registered Nurses working in non-specialist palliative care settings about end-of-life care.DesignA mixed-methods systematic review and narrative synthesis was conducted (PROSPERO Registration No: CRD4202148114). Five databases (Medline, CINAHL, PubMed, PsycINFO and Web of Science) were searched from inception to August 2020. Study quality was assessed using the Mixed Methods Appraisal Tool.ResultsNineteen studies met the inclusion criteria. Registered nurses in non-specialist palliative care settings demonstrated good knowledge of pain symptoms and management and positive attitudes towards caring for dying patients and their families. Knowledge deficits were identified in the psychosocial and spiritual aspects of end-of-life care and registered nurses reported negative attitudes towards communication about death. Only five of the included studies explored registered nurses’ beliefs towards end-of-life care.ConclusionsThere is a need to enhance palliative care education in clinical practice settings and in undergraduate programs to improve registered nurses’ knowledge, attitudes and beliefs about end-of-life care. Future studies that use reliable and validated methods to measure registered nurses’ beliefs about end-of-life care should be conducted.Tweetable abstractRNs in non-specialist palliative care settings want more education on pain management & greater knowledge on communicating about death/dying.     

Palliative sedation: a review of the research literature

The overall aim of this paper is to systematically review the following important aspects of palliative sedation: prevalence, indications, survival, medication, food and fluid intake, decision making, attitudes of physicians, family experiences, and efficacy and safety. A thorough search of different databases was conducted for pertinent research articles published from 1966 to June 2007. The following keywords were used: end of life, sedation, terminal sedation, palliative sedation, refractory symptoms, and palliative care. Language of the articles was limited to English, French, German, and Dutch. Papers reporting solely on the sedatives used in palliative care, without explicitly reporting the prevalence or intensity of sedation, and papers not reporting on primary research (such as reviews or theoretical articles) were excluded. Methodological quality was assessed according to the criteria of Hawker et al. (2002). The search yielded 130 articles, 33.8% of which were peer-reviewed empirical research studies. Thirty-three research papers and one thesis were included in this systematic review. This review reveals that there still are many inconsistencies with regard to the prevalence, the effect of sedation, food and fluid intake, the possible life-shortening effect, and the decision-making process. Further research to clarify all of this should be based on multicenter, prospective, longitudinal, and international studies that use a uniform definition of palliative sedation, and valid and reliable instruments. Only through such research will it be possible to resolve some of the important ethical issues related to palliative sedation.     

Development of a scale to measure the psychosocial impact of assistive devices: lessons learned and the road ahead

Purpose : In this paper the history of the development and validation of the PIADS is reviewed. Assistive devices (ADs) are extremely prevalent forms of health care intervention for persons who have a disability. There is a consensus that the AD field needs a reliable and valid measure of how users perceive the impact of ADs on their quality of life (QoL) and sense of well-being. The Psychosocial Impact of Assistive Devices Scale (PIADS) is a 26 item self-rating scale designed to fill this measurement gap. The challenges that we encountered are described in attempting to adequately conceptualize QOL impact, and operationalize it in a measure suitable for use with virtually all forms of AD. Current efforts to extend the validation of the PIADS are summarized. Conclusions : The study concludes by suggesting directions for future research and development of the scale. They include a richer examination of its conceptual relationships to other health care and rehabilitation outcome measures, and further investigation of its clinical utility. The PIADS is a reliable and valid tool that appears to have very significant power to predict AD abandonment and retention. It can and should be used both deductively and inductively to build, discover and test theory about the psychosocial impact of assistive technology.