The McGill Quality of Life Questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability.
Department of Oncology, McGill University, Montreal, Quebec, Canada.
This is the first report on the McGill Quality of Life Questionnaire (MQOL), a questionnaire relevant to all phases of the disease trajectory for people with a life-threatening illness. This questionnaire differs from most others in three ways: the existential domain is measured; the physical domain is important but not predominant; positive contributions to quality of life are measured. This study was conducted in a palliative care setting. Principal components analysis suggests four subscales: physical symptoms, psychological symptoms, outlook on life, and meaningful existence. Construct validity of the subscales is demonstrated through the pattern of correlations with the items from the Spitzer Quality of Life Index. The importance of measuring the existential domain is highlighted by the finding that, of all the MQOL subscales and Spitzer items, only the meaningful existence subscale correlated significantly with a single item scale rating overall quality of life.
CMAJ. 2012 Jun 12;184 (9):E497-504 22529167
Perspectives of patients, family caregivers and physicians about the use of opioids for refractory dyspnea in advanced chronic obstructive pulmonary disease.
BACKGROUND A recent national practice guideline recommends the use of opioids for the treatment of refractory dyspnea in patients with advanced chronic obstructive pulmonary disease (COPD). We conducted two qualitative studies to explore the experiences of patients and family caregivers with opioids for refractory COPD-related dyspnea and the perspectives and attitudes of physicians toward opioids in this context. METHODS Patients (n = 8; 5 men, 3 women), their caregivers (n = 12; 5 men, 7 women) and physicians (n = 28, 17 men, 11 women) in Nova Scotia participated in the studies. Semistructured interviews were recorded, transcribed verbatim, coded conceptually and analyzed for emergent themes using interpretive description methodology. RESULTS Patients reported that opioids provided a sense of calm and relief from severe dyspnea. Family caregivers felt that opioids helped patients to breathe more "normally," observed improvements in patients' symptoms of anxiety and depression, and experienced reductions in their own stress. Patients reported substantial improvements in their quality of life. All patients and family caregivers wanted opioid therapy to continue. Most physicians were reluctant to prescribe opioids for refractory dyspnea, describing a lack of related knowledge and experience, and fears related to the potential adverse effects and legal censure. INTERPRETATION Discrepancies between the positive experiences of patients and family caregivers with opioids and the reluctance of physicians to prescribe opioids for refractory dyspnea constitute an important gap in care. Bridging this gap will require initiatives to improve the uptake of practice guidelines and to increase confidence in prescribing opioids for dyspnea refractory to conventional treatment.
J Oncol Pract. 2011 Nov ;7 (6):382-8 22379422
Division of Medical Oncology, Department of Medicine; Duke Cancer Care Research Program, Duke Cancer Institute, Duke University Medical Center; Sanford Institute of Public Policy, Duke University, Durham; Four Seasons, Flat Rock; Department of Health Policy and Management, Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, NC.
PURPOSE With improved effectiveness of early detection and treatment, many patients with cancer are now living with advanced disease and associated symptoms. As cancer becomes a chronic illness, adequate attention to patients' symptoms and psychosocial needs in the community setting requires positioning of palliative care alongside cancer care. This article describes the current palliative care needs of a population of community-dwelling patients with advanced cancer who are not yet ready for transition to hospice. METHODS This secondary analysis used quality-monitoring data collected in three community-based palliative care organizations. Analyses focused on people with cancer-related diagnoses who were receiving palliative care during 2008 to 2011. RESULTS The analytic data set included 4,980 people, 10% of whom had cancer. Median age was 71 years. Forty-eight percent had been hospitalized at least once in the 6 months before palliative care referral. Forty-nine percent had a Palliative Performance Score (PPS) of 40% to 60%; 40% had PPS ≤ 30%. Although 81% had an estimated prognosis of ≤ 6 months, 58% were expected to live weeks to months. Thirty-three percent had no identified healthcare surrogate; 59% had no do-not-resuscitate order despite declining functional status and limited prognosis. Ninety-five percent reported ≥ 1 symptom, and 67% reported ≥ 3 symptoms; a substantial proportion did not receive treatment for symptoms. CONCLUSIONS Patients referred to community-based palliative care experience multiple often-severe symptoms that have been insufficiently addressed. They tend to have declining performance status. Earlier palliative care intervention could improve outcomes but will require delivery models that better coordinate inpatient/outpatient oncology and community-based palliative care.
J Support Oncol. ;10 (3):124-30 22285777
Kelly M Trevino, Paul K Maciejewski, Karen Fasciano, Joseph Greer, Ann Partridge, Elizabeth L Kacel, Susan Block, Holly G Prigerson
Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Boston, MA, USA.
BACKGROUND Little is known about how young adults (YAs) cope with cancer or about the relationship between coping and psychological distress in YAs with advanced cancer. OBJECTIVES The goals of this study were to identify coping strategies used by YAs with advanced cancer and examine the relationship between these coping strategies and psychological distress. METHODS Using structured clinical interviews with 53 YAs (aged 20-40 years) with advanced cancer, researchers assessed coping methods, depression, anxiety, and grief. A principal components factor analysis identified underlying coping factors. Regression analyses examined the relationship between these coping factors and depression, anxiety, and grief. RESULTS Six coping factors emerged and were labeled as proactive, distancing, negative expression, support-seeking, respite-seeking, and acceptance coping. Acceptance and support-seeking coping styles were used most frequently. Coping by negative expression was positively associated with severity of grief after researchers controlled for depression, anxiety, and confounding variables. Support-seeking coping was positively associated with anxiety after researchers controlled for depression and grief. LIMITATIONS This study was limited by a cross-sectional design, small sample size, and focus on YAs with advanced cancer. CONCLUSIONS YAs with advanced cancer utilize a range of coping responses that are uniquely related to psychological distress.
Salud es vida: development of a cervical cancer education curriculum for promotora outreach with Latina farmworkers in rural Southern Georgia.
Jiann-Ping Hsu College of Public Health, Georgia Southern University, Statesboro, 30460-8015, USA. email@example.com
We developed and evaluated a lay health worker curriculum intended to educate Hispanic farmworker women on cervical cancer, human papillomavirus (HPV), and the HPV vaccine. We pilot tested the curriculum in 2010 with 7 volunteer promotoras for readability, attractiveness, content, comprehension, cultural appropriateness, persuasion, structure and organization of lessons, balance between didactic and participatory activities, and ease of diffusion to community members. Peer-led cervical cancer prevention education is a practical option for low-income, Hispanic farmworker women in newer immigrant-receiving areas of the United States with fewer Spanish-speaking health professionals.
Experience of Services as a Key Outcome in Amyotrophic Lateral Sclerosis (ALS) Care: The Case for a Better Understanding of Patient Experiences.
School of Social Work & Social Policy, Trinity College Dublin, Dublin 2, Ireland.
People with amyotrophic lateral sclerosis (ALS) frequently express dissatisfaction with services. Patient satisfaction with services in ALS care is not always measured and service user perspectives are not usually included when evaluating the outcomes of care. There is a lack of consensus on what constitutes satisfaction for patients in ALS care. To date, health care professionals' conceptualization of outcomes in ALS care has excluded measures of patient satisfaction with services. Exploring the context of the ALS service user experience of care will identify a conceptual framework that will include the domains of satisfaction with care for patients with ALS. An instrument that draws on the ALS patient perspective of services, developed on the basis of qualitative investigation, should be used to measure satisfaction with services.
The PRISMA Symposium 1: outcome tool use. Disharmony in European outcomes research for palliative and advanced disease care: too many tools in practice.
Richard Harding, Steffen T Simon, Hamid Benalia, Julia Downing, Barbara A Daveson, Irene J Higginson, Claudia Bausewein
Department of Palliative Care, Policy and Rehabilitation and The Cicely Saunders Institute of Palliative Care, King's College London, London, UK. firstname.lastname@example.org
CONTEXT As the European population ages and the number of cancer deaths annually increases, there is an urgent requirement to provide high-quality, effective care. The measurement of outcomes in advanced disease is complex, and to conduct comparative research and meta-analyses, appropriate tool selection is essential. OBJECTIVES This study aimed to identify the outcome tools currently in use in end-of-life care (both clinically and for research) across Europe and investigate the preferred features of outcome tools from the perspective of those who select and apply them. METHODS A pan-European Internet-based survey of tool users was conducted in research and clinical populations. Respondents were asked to identify the tools they are using and describe ideal features of the measures. The study was conducted in accordance with guidance for best practice in web-based research. RESULTS Of the 311 participants who completed a survey, 99 tools in clinical care and audit, and 94 in research, were cited by less than 10 participants. Further data revealed that respondents require the number of potential tools to be rationalized and that brief tools are favored. CONCLUSION The selection of valid and appropriate tools for palliative care populations requires expert guidance and support to ensure that clinicians and researchers are collecting data that have validity and potential for comparison within and between populations and countries.
Clin Nutr. 2012 Feb ;31 (1):85-8 21855185
Celena Scheede-Bergdahl, Heather L Watt, Barbara Trutschnigg, Robert D Kilgour, Allison Haggarty, Enriqueta Lucar, Antonio Vigano
McGill Nutrition and Performance Laboratory, McGill University Health Centre, Montréal, Québec, Canada. email@example.com
BACKGROUND & AIMS Despite the descriptive presence of cancer cachexia (CC) in clinical practice, the underlying mechanisms and diagnostic definition have not been clearly identified. Recent work, attempting to establish diagnostic and staging criteria for CC, has identified IL-6 as a biomarker. This study aimed to investigate the clinical relevance of plasma levels of four pro-inflammatory cytokines (IL-6, IL-1β, IL-8 and TNF-α) in advanced cancer patients (ACP) to further establish their potential in the diagnostic definition of CC. METHODS Blood was obtained from 83 ACP (47 male and 36 female, aged 34-85 years) and analyzed for white blood cells, lymphocytes, C-reactive protein, albumin and cytokines. Subjects completed questionnaires to establish weakness, loss of appetite, fatigue, quality of life and weight loss; completed tests to determine strength, body composition and sarcopenia; and consented to chart review to calculate survival and total days admitted to hospital. RESULTS This study shows that, in ACP, IL-1β is better associated with clinical features of the cachectic condition, such as weakness, loss of appetite, weight loss and sarcopenia, than IL-6. CONCLUSION IL-6 may not best represent the clinical correlates of CC in ACP. Additional cytokines should be considered in the definition of this condition.
The relationship of spiritual concerns to the quality of life of advanced cancer patients: preliminary findings.
William D Winkelman, Katharine Lauderdale, Michael J Balboni, Andrea C Phelps, John R Peteet, Susan D Block, Lisa A Kachnic, Tyler J VanderWeele, Tracy A Balboni
Harvard Medical School, Boston, Massachusetts, USA.
PURPOSE Religion and/or spirituality (R/S) have increasingly been recognized as key elements in patients' experience of advanced illness. This study examines the relationship of spiritual concerns (SCs) to quality of life (QOL) in patients with advanced cancer. PATIENTS AND METHODS Patients were recruited between March 3, 2006 and April 14, 2008 as part of a survey-based study of 69 cancer patients receiving palliative radiotherapy. Sixteen SCs were assessed, including 11 items assessing spiritual struggles (e.g., feeling abandoned by God) and 5 items assessing spiritual seeking (e.g., seeking forgiveness, thinking about what gives meaning in life). The relationship of SCs to patient QOL domains was examined using univariable and multivariable regression analysis. RESULTS Most patients (86%) endorsed one or more SCs, with a median of 4 per patient. Younger age was associated with a greater burden of SCs (β = -0.01, p = 0.006). Total spiritual struggles, spiritual seeking, and SCs were each associated with worse psychological QOL (β = -1.11, p = 0.01; β = -1.67, p < 0.05; and β = -1.06, p < 0.001). One of the most common forms of spiritual seeking (endorsed by 54%)--thinking about what gives meaning to life--was associated with worse psychological and overall QOL (β = - 5.75, p = 0.02; β = -12.94, p = 0.02). Most patients (86%) believed it was important for health care professionals to consider patient SCs within the medical setting. CONCLUSIONS SCs are associated with poorer QOL among advanced cancer patients. Furthermore, most patients view attention to SCs as an important part of medical care. These findings underscore the important role of spiritual care in palliative cancer management.
School of Nursing, University of Victoria, Victoria, British Columbia, Canada. firstname.lastname@example.org
AIM This article presents a discussion of the use of palliative sedation in response to intractable (not responsive to treatment) existential suffering. BACKGROUND Patients suffering from a terminal illness are often faced with severe symptoms at the end of life. Although palliative sedation is sometimes used when no other options are effective in relieving unbearable pain or suffering, its use in response to intractable existential suffering in terminal illness remains controversial. DATA SOURCES A literature search was conducted for published articles addressing the use of palliative sedation between 1996 and 2009 using established databases. DISCUSSION Palliative sedation remains an uneasy practice. The debates have centred on ethical issues surrounding decisions to use sedation and on separating the intent of palliative sedation (relief of intolerable symptoms) from the intent of euthanasia (hastening death). There is lack of consensus in defining existential suffering. Consequently, there is limited understanding of how decisions are being made when using palliative sedation to treat intractable existential suffering. CONCLUSIONS Given the confusion and uncertainty about ethical and clinical justifications for palliative sedation in treating existential suffering, we argue that a better understanding of the controversies and decision-making process is needed. Greater understanding is required to prevent palliative sedation from becoming a substitute for intensive treatment of this kind of suffering.
Cancer. 2011 Dec 1;117 (23):5383-91 21563177
Support of cancer patients' spiritual needs and associations with medical care costs at the end of life.
Tracy Balboni, Michael Balboni, M Elizabeth Paulk, Andrea Phelps, Alexi Wright, John Peteet, Susan Block, Chris Lathan, Tyler Vanderweele, Holly Prigerson
Center for Psycho-Oncology and Palliative Care Research, Dana-Farber Cancer Institute, Boston, Massachusetts, USA. email@example.com
BACKGROUND Although spiritual care is associated with less aggressive medical care at the end of life (EOL), it remains infrequent. It is unclear if the omission of spiritual care impacts EOL costs. METHODS A prospective, multisite study of 339 advanced cancer patients accrued subjects from September 2002 to August 2007 from an outpatient setting and followed them until death. Spiritual care was measured by patients' reports that the health care team supported their religious/spiritual needs. EOL costs in the last week were compared among patients reporting that their spiritual needs were inadequately supported versus those who reported that their needs were well supported. Analyses were adjusted for confounders (eg, EOL discussions). RESULTS Patients reporting that their religious/spiritual needs were inadequately supported by clinic staff were less likely to receive a week or more of hospice (54% vs 72.8%; P =.01) and more likely to die in an intensive care unit (ICU)(5.1% vs 1.0%, P =.03). Among minorities and high religious coping patients, those reporting poorly supported religious/spiritual needs received more ICU care (11.3% vs 1.2%, P =.03 and 13.1% vs 1.6%, P =.02, respectively), received less hospice (43.% vs 75.3% ≥1 week of hospice, P =.01 and 45.3% vs 73.1%, P =.007, respectively), and had increased ICU deaths (11.2% vs 1.2%, P =.03 and 7.7% vs 0.6%, P =.009, respectively). EOL costs were higher when patients reported that their spiritual needs were inadequately supported ($4947 vs $2833, P =.03), particularly among minorities ($6533 vs $2276, P =.02) and high religious copers ($6344 vs $2431, P =.005). CONCLUSIONS Cancer patients reporting that their spiritual needs are not well supported by the health care team have higher EOL costs, particularly among minorities and high religious coping patients.
Other papers by authors:
Division of Palliative Care, Department of Oncology, McGill University, Department of Medicine, McGill University Health Centre, Canada. firstname.lastname@example.org
The primary goal of palliative care is to improve the quality of life (QOL) of people with a terminal illness. Previous studies of the impact of hospice/palliative care have documented improvement in physical and psychological symptoms, but not in overall QOL, due in part to the difficulties of measuring QOL. The McGill Quality of Life Questionnaire (MQOL) was developed to assess QOL in persons with advanced illness. MQOL scores were determined on admission and 7-8 days later for sequential eligible and willing patients admitted to five palliative care units. These 88 patients represented 8% of those admitted to the units during the study period. Following the final MQOL completion, patients were interviewed and asked to describe the nature of the changes in QOL they had experienced since admission. Significant improvements were found in the MQOL total score and subscale scores reflecting physical, psychological and existential well-being. In the interviews patients indicated that they had experienced changes in physical, emotional and interpersonal status, in spiritual outlook, and in their preparation for death. They also described the impact of the palliative care unit environment. This is the first study to demonstrate that hospice/palliative care can improve existential well-being in addition to psychological and physical symptoms. It provides evidence in the patients' own words that improvements in QOL go beyond symptom control following admission to a palliative care unit. However, the study results are generalizable only to those few patients admitted who are well enough to complete a questionnaire 1 week after admission.
Living with cancer:"good" days and "bad" days--what produces them? Can the McGill quality of life questionnaire distinguish between them?
Department of Oncology, McGill University Montreal, Quebec, Canada. email@example.com
BACKGROUND To determine the impact of care on quality of life (QOL), or to detect a change in QOL over time, measures of QOL must remain stable when QOL is stable (test-retest reliability) and change when QOL changes (responsiveness). This study addresses these issues for the McGill Quality of Life Questionnaire (MQOL). Unlike other studies that use disease status to indicate whether QOL has remained stable or changed, in this study the patient determines QOL stability or change. The authors also sought to clarify the determinants of "good" and "bad" days for oncology patients. METHODS Patients attending an oncology outpatient clinic or who were being treated by a palliative care service were asked to complete MQOL 4 times: on days they judged to be "good,""average," and "bad" and 2 days after the first completion. They also were asked to directly rate the change in their QOL during the intervals between MQOL completion and to report the most important determinants of their good and bad days. RESULTS The test-retest reliability of MQOL as measured by an intraclass correlation coefficient ranged from 0.69 to 0.78. All MQOL scores were significantly different on good, average, and bad days, except for the support subscale, in both clinical settings. Five domains were determinants of QOL: physical symptoms, physical functioning, psychologic well-being, existential well-being, and relationships. CONCLUSIONS MQOL's reliability and responsiveness suggest it can be used to determine changes in the QOL of groups. The results allow interpretation of changes in MQOL scores with respect to meaning of the change to oncology patients. This in turn is helpful to determine the sample size required in future studies. Some of the domains important to the QOL of oncology patients are not included in widely used measures of QOL.
Well-being at the end of life: Part 2. A research agenda for the delivery of care from the patient's perspective.
Department of Oncology, McGill University, Montreal, Que. firstname.lastname@example.org
This article reviews the scientific literature in several areas important to the delivery of palliative care: multicultural issues, education, comprehensive outcome measures and ethics. Most of the research can be classified as fundamental rather than intervention research according to the Cancer Control Framework of the National Cancer Institute of Canada. Desired outcomes of interventions are most often defined from the health care professional's perspective but need to be defined from the patient's perspective. In areas such as multicultural issues and the effect of the volunteer on the patient, there is almost no research. The complexity of studying the best way to deliver palliative care would benefit from the input of colleagues who have experience addressing these issues in other patient populations.
Well-being at the end of life: Part 1. A research agenda for psychosocial and spiritual aspects of care from the patient's perspective.
Department of Oncology, McGill University, Montreal, Que. email@example.com
This article reviews the scientific literature concerning psychosocial and spiritual aspects of palliative care for the patient with cancer. It discusses 4 separate areas: the continuum of care, communication, spiritual and psychological issues, and psychotherapeutic and behavioural management of physical symptoms. Most of the research could be classified as fundamental according to the Cancer Control Framework of the National Cancer Institute of Canada. In some areas, even fundamental research was lacking. There is a need for clearer and more relevant definitions of the desired outcomes of interventions and also for the development of appropriate quantitative and qualitative methods. We must determine which interventions can be initiated earlier in the disease trajectory and can provide benefit at the palliative phase. Given the burden of suffering that palliative care aims to address, relatively little research in this area has been conducted.
Validity of the McGill Quality of Life Questionnaire in the palliative care setting: a multi-centre Canadian study demonstrating the importance of the existential domain.
Department of Oncology, McGill University, Montréal, Québec, Canada.
This study was carried out in eight palliative care services in four Canadian cities. A revised version of The McGill Quality of Life Questionnaire (MQOL) is compared to a single-item scale measuring overall quality of life (SIS), and the self-administered version of the Spitzer Quality of Life Index (SA-QLI), to obtain evidence of validity. MQOL total score predicts SIS better than does SA-QLI, although much of the variance remains to be explained. The results of principal components analysis of data using this revised version of MQOL are similar to those from previous MQOL studies with different patient populations. The MQOL subscales, constructed on the basis of principal components analysis, demonstrate acceptable internal consistency reliability. The MQOL measures reflecting physical well-being and existential well-being are important for predicting SIS.
Department of Oncology, McGill University, Montreal, Quebec, Canada.
OBJECTIVE: To test the acceptability, validity, and internal consistency reliability of the McGill quality of life questionnaire (MQOL) for persons living with HIV/AIDS. DESIGN: The validity of MQOL was tested by having HIV-seropositive outpatients complete the 16-item MQOL, a single-item scale (SIS) measuring overall quality of life (QOL), and a physical symptom questionnaire. METHODS: Factor analysis was used as a guide for construction of MQOL subscales. Validity was studied by determining the correlation between MQOL and SIS, and between MQOL physical measures, CD4 counts and the physical symptoms questionnaire. Multiple regression was employed to determine how best to combine MQOL subscales to predict SIS. RESULTS: MQOL was acceptable to this patient population. Factor analysis suggests that MQOL can be represented by live measures: a single item measuring physical well-being and four subscales representing physical symptoms, psychological symptoms, existential well-being, and support. Multiple regression analyses suggest that the existential domain contributes greatly to QOL for people with advanced HIV disease (CD4 counts < 100 x 10(6)/l). CONCLUSION: MQOL is an acceptable and valid measure of QOL for people living with HIV/AIDS, with meaningful and reliable subscales as well as a summary score. The inclusion of a measure of existential well-being in MQOL may make it a more valid measure of QOL, especially for people with advanced disease, than QOL instruments which do not include this domain.
Existential well-being is an important determinant of quality of life. Evidence from the McGill Quality of Life Questionnaire.
Department of Oncology, McGill University, Montréal, Québec, Canada.
BACKGROUND. The McGill Quality of Life Questionnaire (MQOL) is being developed to correct what we perceive to be a flaw in existing quality of life instruments: neglect of the existential domain. METHODS. This study reports the first use of MQOL for people with cancer at all phases of the disease, including those with no evidence of disease after therapy. RESULTS. The data suggest that MQOL is comprised of an item measuring physical well-being and four subscales: physical symptoms, psychological symptoms, existential well-being, and support. MQOL is acceptable to oncology outpatients. Correlation of the MQOL total and subscale scores with a single item scale measuring overall quality of life and with the Spitzer Quality of Life Index suggests that MQOL has construct and concurrent validity. CONCLUSIONS. The hypothesis that the existential domain is important, especially to those patients with a life-threatening illness, is supported because multiple regression showed that the existential subscale is at least as important as any other subscale in predicting a single item scale measuring the overall quality of life and plays a greater role in determining the quality of life of patients with local or metastatic disease than in patients with no evidence of disease.
Department of Oncology, McGill University, Montreal, Quebec, Canada.
Research in affective disorders has shown that there is a clear link between mood and light exposure, and that exposure to bright wide-spectrum light (phototherapy) may be an effective antidepressant treatment in some clinical situations. Cancer patients, especially those in the terminal phase of illness, have a high incidence of depression. Furthermore, their mobility is often severely reduced, resulting in little exposure to direct sunlight. We report the use of phototherapy in three terminally ill patients to alleviate symptoms of depression.
McGill University, Montreal, Quebec, Canada.
Latest similar papers:
Cancer Nurs. 2012 Oct 5;: 23047796
Nurse-Facilitated Preparation and Life Completion Interventions Are Acceptable and Feasible in the Australian Palliative Care Setting: Results From a Phase 2 Trial.
Author Affiliations: Centre for Medical Psychology and Evidence-Based Decision Making, University of Sydney (Ms Keall and Drs Butow and Clayton), and Hammond Care Palliative and Supportive Care Service, Greenwich Hospital (Ms Keall and Dr Clayton), Sydney, Australia; Center for Health Services Research in Primary Care, Center for Palliative Care Duke University, Durham, North Carolina (Dr Steinhauser); Department of Palliative Care, Royal North Shore Hospital, Sydney, Australia (Dr Clayton).
BACKGROUND:: Existential/spiritual needs of advanced cancer patients are not always met in healthcare. Potential barriers for health professionals exploring existential concerns include lack of time, training, tools, and confidence. Yet patients with life-threatening illnesses require holistic care, and interest in their existential/spiritual needs is growing. Preparation and life completion interventions have shown positive results in the existential/spiritual care of hospice-eligible patients in the United States. Nurses are in the ideal position to deliver such interventions, but have not been previously evaluated in this context. OBJECTIVE:: The objective of this study was to explore the acceptability and feasibility of a nurse-facilitated preparation and life completion intervention (Outlook) in an Australian palliative care patient population. METHODS:: Patients discussed their life story, forgiveness, and heritage and legacy over 3 audiotaped sessions. Preintervention/postintervention outcome measures included the Memorial Symptom Assessment Scale, Functional Assessment of Cancer Therapy-Spirituality Well-being, Profile of Mood States, Quality of Life at End of Life Scale, and Center for Epidemiological Depression Scale. Participant feedback was subjected to thematic analysis to understand the patient experience of receiving the intervention. RESULTS:: Ten palliative care patients with advanced cancer completed the study. Patients reported the intervention and assessments to be acceptable and feasible and to be overall positively received although with nonsignificant improvements in measures of "meaning and peace" and "preparation for end of life." CONCLUSION:: A nurse-facilitated preparation and life completion intervention is acceptable and feasible for palliative care patients with advanced cancer in Australia. IMPLICATIONS FOR PRACTICE:: Outlook is a novel, portable, and feasible tool for use by nurses when addressing existential and spiritual domains of care with patients with advanced cancer.
Pain intensity, quality of life, quality of palliative care, and satisfaction in outpatients with metastatic or recurrent cancer: a Japanese, nationwide, region-based, multicenter survey.
Akemi Yamagishi, Tatsuya Morita, Mitsunori Miyashita, Ayumi Igarashi, Miki Akiyama, Nobuya Akizuki, Yutaka Shirahige, Kenji Eguchi
Department of Nursing, Seirei Christopher University, Hamamatsu, Shizuoka, Japan. firstname.lastname@example.org
CONTEXT Increasing numbers of patients with advanced cancer are receiving anticancer and/or palliative treatment in outpatient settings, and palliative care for outpatients with advanced cancer is being recognized as one of the most important areas for comprehensive cancer treatment. OBJECTIVES The aim of this study was to evaluate pain intensity, quality of life, quality of palliative care, and satisfaction reported by outpatients with advanced cancer. METHODS Questionnaires were sent to 1493 consecutive outpatients with metastatic or recurrent cancer from four regions in Japan; 859 responses were analyzed (58%). Questionnaires included the Brief Pain Inventory, Good Death Inventory, Care Evaluation Scale, and a six-point satisfaction scale. RESULTS Approximately 20% of the patients reported moderate to severe pain. Whereas more than 70% agreed or strongly agreed with "good relationship with medical staff" and "being respected as an individual," less than 60% agreed or strongly agreed with "free from physical distress,""free from emotional distress,""maintaining hope," and "fulfillment at life's completion"; 54% reported some agreement with "feel a burden to others." About 20% reported that improvement is necessary in physical care by physicians, physical care by nurses, psycho-existential care, help with decision making, and coordination/consistency of care; 13% reported some levels of dissatisfaction. CONCLUSION A considerable number of outpatients with metastatic or recurrent cancer experienced pain, physical symptoms, emotional distress, and existential suffering, and advocated improvements in palliative care across multiple areas.
Br J Nurs. ;20 (20):1320-4 22068011
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.
Joseph Low, Sarah Davis, Robyn Drake, Michael King, Adrian Tookman, Karen Turner, Marc Serfaty, Baptiste Leurent, Louise Jones
Marie Curie Palliative Care Research Unit, Research Department of Mental Health Sciences, University College London, London, United Kingdom. email@example.com
CONTEXT Palliative care rehabilitation aims to maximize physical and psychological functioning, but negative thoughts can hinder patients from attempting this approach. Acceptance and commitment therapy (ACT), a modified form of cognitive behavioral therapy, encourages individuals to experience and manage negative emotions by focusing on changing individual behavior and so improve functioning. ACT has been used in many health-related behavioral interventions but not in palliative care rehabilitation. OBJECTIVES To investigate the relationship between acceptance (often called experiential acceptance in ACT) and psychological and physical status. METHODS Cross-sectional study in which a consecutive sample of patients attending a specialist palliative care day therapy unit for rehabilitation completed the Acceptance and Action Questionnaire-II to measure acceptance and the Kessler-10 questionnaire to measure psychological morbidity. Physical function was assessed by a timed two-minute walking test and one-minute sit-to-stand test. Correlation statistics and multivariable regression analyses were used to explore the strength of relationships between acceptance and psychological morbidity and physical function. RESULTS One hundred one patients were recruited, mainly white women with a mean age of 64 years. Correlation analysis showed a negative association between acceptance and psychological morbidity (r=-0.59) and a positive association between acceptance and sit to stand (r=0.27) and distance walked (r=0.21). All three of these relationships were statistically significant after adjustment. CONCLUSION These associations suggest that it may be possible to reduce psychological morbidity and improve physical mobility by increasing patients' acceptance using an ACT-based intervention. Future work is now needed to develop an ACT-based intervention in palliative care rehabilitation and test its acceptability and feasibility.
St. Nicholas Hospice Care, Suffolk, England. firstname.lastname@example.org
The potential of spirituality to contribute to improving the quality of life of those experiencing life-threatening illness is yet to be fully realised in most palliative care settings. This may be due to many health professionals relegating spiritual issues to the background of palliative care instead of regarding spirituality as a domain equal to the physical, social, and psychological domains. The aim of this paper is to demonstrate, by reviewing the literature and providing examples from the author's personal experience as a chaplain, why spirituality should be considered on an equal footing with other key themes in palliative care, like relieving pain and advance care planning. It is hoped that this will create more self-awareness and generate greater discussion about the subject.
Palliat Med. 2012 Apr ;26 (3):242-9 21697267
Are we heading in the same direction? European and African doctors' and nurses' views and experiences regarding outcome measurement in palliative care.
King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation, London, UK. email@example.com
OBJECTIVE To examine and compare doctors' and nurses' views and experiences regarding outcome measurement in palliative care, including patient-reported outcome measures (PROMs). METHODS A web-based survey developed through expert review and piloting was conducted in Europe and Africa with palliative care professionals working in clinical care, audit and research. RESULTS The overall participation rate was 42%(663/1592) and the overall completion rate was 59%(392/663). Of these respondents, 196 were doctors (51% male, mean 47 years) and 104 were nurses (84% female, mean 45 years). Doctors' most common reported reasons for not using tools were time constraints followed by lack of training. For nurses, it was lack of training followed by time constraints. Provision of information and guidance influenced willingness to use measures. For those that used tools, most reported favourable outcome measurement experiences. Both prioritized brief PROMs, and measures that included physical and psychological domains. For clinical purposes, the main advantage for doctors was assessment/screening, and clinical decision making for nurses. For research, doctors were most influenced by a measure's comparability with national/international literature followed by its validation in palliative care. For nurses, validation in palliative care was followed by tool access. CONCLUSION Overall these respondents shared similar views and experiences, and both were influenced by similar factors. Multidisciplinary outcome measurement education and training is feasible and required. Multidimensional and brief PROMs that include physical and psychological domains need to be prioritized, and access to freely available, validated and translated tools is needed to ensure cross-national comparisons and coordination of international research.
Quality of life among patients receiving palliative care in South Africa and Uganda: a multi-centred study.
Lucy E Selman, Irene J Higginson, Godfrey Agupio, Natalya Dinat, Julia Downing, Liz Gwyther, Thandi Mashao, Keletso Mmoledi, Tony Moll, Lydia Mpanga Sebuyira, Barbara Ikin, Richard Harding
King's College London, Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, Bessemer Road, Denmark Hill, London SE5 9PJ, UK. firstname.lastname@example.org
Quality of life (QOL) is a core outcome of palliative care, yet in African settings there is a lack of evidence on patients' levels of QOL. We aimed to describe QOL among patients with incurable, progressive disease receiving palliative care in South Africa and Uganda, to compare QOL in cancer and HIV, to determine how domains of QOL correlate with overall QOL, and compare levels of QOL in this population with those in other studies using the same tool. A cross-sectional survey was conducted using the Missoula Vitas Quality of Life Index (MVQOLI), a 26-item QOL questionnaire with five subscales (Function, Symptom, Interpersonal, Well being, Transcendent) covering physical, social, psychological and spiritual domains and one global QOL item. One item in each subscale assesses the subjective importance of the domain on a score from 1 (least important) to 5 (most important), used to weight the contribution of the subscale towards the Total QOL score. The tool was translated into 6 languages and administered to consecutively recruited patients at four facilities in South Africa and one in Uganda. 285 patients were recruited, with a mean age of 40.1; 197 (69.1%) were female. Patients' primary diagnoses were HIV (80.7%), cancer (17.9%) and other conditions (1.4%). The mean global QOL score was 2.81 (possible range 0 (worst) to 5 (best)); mean Total score 17.32 (possible range 0 to 30). Patients scored most poorly on Function (mean 0.21), followed by Well being (2.59), Symptoms (5.38), Transcendent (5.50), Interpersonal (9.53)(possible range for subscale scores -30 to 30). Most important to patients were: close relationships (mean 4.13), feeling at peace (4.12), sense of meaning in life (4.10), being active (3.84), physical comfort (2.58). Cancer patients were predominantly recruited at three of the sites; hence comparison with HIV-infected patients was restricted to these sites. HIV+ patients (n = 115) scored significantly worse than cancer patients (n = 50) on Well being (Z =-2.778, p = 0.005), Transcendence (Z =-2.693, p = 0.007) and Total QOL (Z =-2.564, p = 0.01). Global QOL score was most weakly correlated with Total QOL (r = 0.37) and the Transcendent subscale was most highly correlated (r = 0.77)(both p < 0.001). Patients receiving palliative care in South Africa and Uganda exhibited significantly poorer QOL compared to similar populations in the USA. Feeling at peace and having a sense of meaning in life were more important to patients than being active or physical comfort, and spiritual wellbeing correlated most highly with overall QOL. It is therefore vital to identify and meet the psychological and spiritual care needs of patients, as well as to assess and treat pain and other symptoms. Our finding that patients scored most poorly on the Function domain warrants further research.
Assessment of quality of life in patients receiving palliative care: comparison of measurement tools and single item on subjective well-being.
Division of Palliative Medicine, University Hospital Erlangen, Erlangen, Germany. email@example.com
STUDY AIM 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. METHODS 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. RESULTS 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. CONCLUSIONS 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.
J Palliat Care. 2010 ;26 (2):88-93 20718393
Quality of life in terminally ill cancer patients: contributors and content validity of instruments.
Division of Experimental Medicine, Faculty of Medicine, McGill University, Montreal, Quebec, Canada. firstname.lastname@example.org
Over the last few decades, improvement in the quality of life (QOL) of cancer patients has received a lot of attention in oncology. This study aims to further explore what factors terminally ill cancer patients report as influencing their QOL. Content analysis of 110 terminally ill cancer patients' answers to the McGill Quality of Life Questionnaire open-ended question was performed. Negative and positive factors reported by patients as having an impact on their QOL were identified then categorized into eight domains:"physical condition and symptoms,""psychological status,""existential,""relationships and support,""quality of care,""physical environment and living facilities,""hobbies and daily activities," and "finances." The "physical condition and symptoms" and "relationships and support" domains were the two most often described by participants as important to their QOL. The results support previous work identifying domains important to the QOL of terminally ill patients with cancer, but they also identify "finances" as a new domain. Based on these findings, we suggest including "finances" in QOL instruments for the terminally ill as an experimental domain.
Ruth A Engelberg, Lois Downey, Marjorie D Wenrich, Jan D Carline, Gerard A Silvestri, Danae Dotolo, Elizabeth L Nielsen, J Randall Curtis
Division of Pulmonary & Critical Care Medicine, Department of Medicine, Harborview Medical Center, Seattle, Washington 98104-2499, USA. email@example.com
CONTEXT Although there is a documented need to improve end-of-life care, there are few validated and brief questionnaires that are available as outcome measures for use in improving that care. OBJECTIVES To examine the measurement characteristics of the Quality of End-of-Life Care (QEOLC) questionnaire. METHODS In a multisite, cross-sectional study of a mailed questionnaire, patients with life-limiting illnesses, their families, and nurses completed the QEOLC questionnaire. Patients and nurses were identified by physicians, and families were identified by participating patients. Physicians included general internists, oncologists, cardiologists, and pulmonologists from the Southeast and Pacific Northwest of the United States. RESULTS Eight hundred one patients, 310 of their families, and 885 nurses were identified by 85 physicians. Using structural equation modeling techniques corrected for clustering under physicians, we identified a patient-specific factor based on 11 items, a family-specific factor based on 22 items, a nurse-specific factor based on 11 items, and a common single-factor solution based on 10 items. Construct validity was supported by significant associations in the hypothesized direction between the identified QEOLC factors and each of the following: physician palliative care knowledge, patients' and families' ratings of overall quality of care, and patients' levels of symptom distress. CONCLUSION Although continued testing in heterogeneous samples is necessary, the current study supported the construct validity of the QEOLC questionnaire to assess physician skill at end-of-life care, thereby providing valid measures of quality end-of-life care. Furthermore, this approach is a model for development and validation of patient- and family-centered assessments of quality of care.