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1.
Palliat Med ; 34(5): 630-638, 2020 05.
Article in English | MEDLINE | ID: mdl-32103705

ABSTRACT

BACKGROUND: Some evidence suggests the wish to hasten death is related to poor health-related quality of life. Deficits in perceived dignity and self-efficacy are risk factors for wish to hasten death that also impact health-related quality of life. AIM: To compare perceived health-related quality of life, dignity and self-efficacy in patients with advanced cancer who either do (case group) or do not (control group) express a wish to hasten death. Cases and controls were matched on sociodemographic and functional characteristics. DESIGN: A comparative cross-sectional study. PARTICIPANTS: A total of 153 adult patients with advanced cancer were assessed for wish to hasten death using the Desire for Death Rating Scale. Scores ⩾1 indicate some degree of wish to hasten death (case group, n = 51), and score = 0 implies no wish to hasten death (control group, n = 102). Assessments included health-related quality of life using the European Organization for Research and Treatment of Cancer Quality-of-Life Core 15-Item Palliative Questionnaire, perceived loss of dignity using the Patient Dignity Inventory and self-efficacy using the General Self-Efficacy Scale. RESULTS: Patients with a wish to hasten death had worse emotional functioning (p < 0.001), greater perceived loss of dignity (p < 0.001) and lower self-efficacy (p = 0.001). There was no difference in most physical symptoms. Perceived overall health-related quality of life was significantly worse for those with a clinically relevant wish to hasten death (p = 0.023) and marginally worse for the case group than the control group (p = 0.052). CONCLUSION: Patients with wish to hasten death showed lower perceived dignity, self-efficacy and emotional quality of life than patients without wish to hasten death without necessarily perceiving worse physical symptoms.


Subject(s)
Attitude to Death , Neoplasms/psychology , Quality of Life , Terminally Ill , Adult , Cross-Sectional Studies , Humans , Palliative Care , Right to Die
2.
Psychooncology ; 27(6): 1538-1544, 2018 06.
Article in English | MEDLINE | ID: mdl-29490118

ABSTRACT

INTRODUCTION: The Desire for Death Rating Scale (DDRS) and the short form of the Schedule of Attitudes toward Hastened Death (SAHD-5) are different approaches to assessing the wish to hasten death (WTHD). Both have clinical threshold scores for identifying individuals with a meaningfully elevated WTHD. However, the agreement between the 2 measures and patient opinions about assessment of the WTHD are unknown. OBJECTIVES: To compare the DDRS and SAHD-5 and to analyze patient opinions about assessment of the WTHD. METHODS: The WTHD was assessed in 107 patients with advanced cancer using both the DDRS and SAHD-5. Patients were subsequently asked their opinion about this assessment. RESULTS: Correlation between scores on the SAHD-5 and the DDRS was moderate, Spearman rho = 0.67 (P < .01). The SAHD-5 identified 13 patients (12.1%) at risk of the WTHD, and the DDRS identified 6 patients (5.6%) with a moderate-high WTHD (P > .05). Concordance between the DDRS and SAHD-5 in identifying individuals with an elevated WTHD was poor when using recommended cut-off scores, κ = 0.37 (P < 0.01) but could be improved by using different thresholds. Only 4 patients (3.8%) regarded the assessment questions as bothersome, and 90.6% considered it important that health-care professionals inquire about the WTHD. CONCLUSIONS: The SAHD-5 and DDRS appear to be appropriate methods for assessing the WTHD and could provide complementary information in clinical practice: the SAHD-5 to screen for risk of the WTHD and the DDRS as a clinical interview to explore it in greater detail. Assessment of the WTHD is well accepted by palliative care cancer patients.


Subject(s)
Neoplasms/psychology , Quality of Life/psychology , Surveys and Questionnaires/standards , Terminally Ill/psychology , Aged , Attitude to Death , Female , Humans , Male , Middle Aged , Palliative Care/psychology
3.
Psychooncology ; 26(12): 2224-2231, 2017 Dec.
Article in English | MEDLINE | ID: mdl-27943606

ABSTRACT

OBJECTIVE: Hematopoietic stem cell transplantation (HSCT) is a demanding treatment. Spouses of HSCT patients assume caregiving responsibilities that can induce feelings of burden and disrupt relationship equity. On the basis of equity theory, we propose a conceptual framework examining the individual and dyadic experience of HSCT patients and their caregivers. The model includes feelings of inequity, patient self-perceived burden, caregiver burden, and distress. METHODS: The HSCT patients and their spousal caregivers were recruited prior to HSCT between March 2011 and September 2012. Each member of the dyad self-administered a questionnaire package. RESULTS: Seventy-two dyads were included in the path analyses. Our model demonstrated an inadequate statistical fit; however, with one modification, an adequate to good fit was obtained: χ2 (df) = 6.01(5), normed χ2  = 1.20, standardized root mean square residual = 0.048, comparative fit index = 0.99, Tucker-Lewis index = 0.96, and root-mean-square error of approximation = 0.05 (90% CI, 0.00-0.18). As hypothesized, pre-HSCT caregiver burden mediates the relationship between caregiver underbenefit and caregiver distress. However, patient self-perceived burden was not associated with patient distress; rather, patient perception of overbenefit was related to patient distress. In our modified model, the results demonstrate that patient overbenefit influenced caregiver burden; however, there was not a reciprocal influence, because caregiver variables did not affect patient variables. CONCLUSIONS: Our proposed theoretical framework describes patients' and caregivers' individual experience of distress before HSCT but does not as clearly encompass the dyadic experience. Addressing perceived imbalances and providing psycho-education on role changes within HSCT dyads before transplantation may be a useful prehabilitation strategy for preventing distress.


Subject(s)
Caregivers/psychology , Hematopoietic Stem Cell Transplantation/psychology , Neoplasms/psychology , Spouses/psychology , Adaptation, Psychological , Aged , Female , Humans , Male , Middle Aged , Neoplasms/surgery , Stress, Psychological/etiology , Surveys and Questionnaires
4.
Support Care Cancer ; 24(10): 4167-75, 2016 10.
Article in English | MEDLINE | ID: mdl-27193116

ABSTRACT

PURPOSE: This study aims to examine if mindfulness is associated with pain catastrophizing, depression, disability, and health-related quality of life (HRQOL) in cancer survivors with chronic neuropathic pain (CNP). METHOD: We conducted a cross-sectional survey with cancer survivors experiencing CNP. Participants (n = 76) were men (24 %) and women (76 %) with an average age of 56.5 years (SD = 9.4). Participants were at least 1 year post-treatment, with no evidence of cancer, and with symptoms of neuropathic pain for more than three months. Participants completed the Five Facets Mindfulness Questionnaire (FFMQ), along with measures of pain intensity, pain catastrophizing, pain interference, depression, and HRQOL. RESULTS: Mindfulness was negatively correlated with pain intensity, pain catastrophizing, pain interference, and depression, and it was positively correlated with mental health-related HRQOL. Regression analyses demonstrated that mindfulness was a negative predictor of pain intensity and depression and a positive predictor of mental HRQOL after controlling for pain catastrophizing, age, and gender. The two mindfulness facets that were most consistently associated with better outcomes were non-judging and acting with awareness. Mindfulness significantly moderated the relationships between pain intensity and pain catastrophizing and between pain intensity and pain interference. CONCLUSION: It appears that mindfulness mitigates the impact of pain experiences in cancer survivors experiencing CNP post-treatment. IMPLICATIONS FOR CANCER SURVIVORS: This study suggests that mindfulness is associated with better adjustment to CNP. This provides the foundation to explore whether mindfulness-based interventions improve quality of life among cancer survivors living with CNP.


Subject(s)
Depression/psychology , Mindfulness/methods , Neoplasms/complications , Neuralgia/psychology , Pain Measurement/methods , Quality of Life/psychology , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Neoplasms/mortality , Surveys and Questionnaires , Survivors
5.
J Emerg Nurs ; 42(3): 207-12, 2016 May.
Article in English | MEDLINE | ID: mdl-26435352

ABSTRACT

UNLABELLED: Emergency nurses work in a clinical area where treatment measures usually are provided quickly, and they have little time to establish relationships. In addition to performing life-saving interventions, emergency nurses provide care for patients who are dying. Little is known about the experiences of emergency nurses who care for patients who die in the emergency department in the Canadian context. METHODS: This study used a qualitative design with an interpretive descriptive approach. Semistructured interviews were conducted with 11 ED nurses from a large Canadian academic health sciences system. RESULTS: In-depth analysis of the data resulted in 3 major themes: "It's not a nice place to die," "I see the grief," and "Needing to know you've done your best." Findings revealed that emergency nurses believed the environment made it difficult to care for dying patients and their families because of unpredictability, busyness, noise, lack of privacy, and the need to manage many patients simultaneously. These nurses were also put in the position of caring for the suddenly bereaved family members, which was viewed as an especially challenging aspect of their role. DISCUSSION: Caring for adults who die in the emergency department is a difficult and challenging aspect of the emergency nursing role. Emergency nurses believed they did their best to provide end-of-life care interventions, which brought a sense of professional satisfaction. Recommended future interventions include advocating for ED design and physical layout to support compassionate end-of-life care, provision of policies and training to support families and family presence, and support of nursing staff.


Subject(s)
Attitude of Health Personnel , Attitude to Death , Emergency Nursing/methods , Emergency Service, Hospital , Nursing Staff, Hospital/psychology , Terminal Care/psychology , Adult , Canada , Female , Humans , Interviews as Topic , Male , Surveys and Questionnaires
6.
J Behav Med ; 38(3): 518-26, 2015 Jun.
Article in English | MEDLINE | ID: mdl-25716120

ABSTRACT

The aim of this study was to examine the hypothesis that attachment insecurity is associated with poorer responses to interdisciplinary treatment for chronic pain. Patients (n = 235) admitted to a 4-week interdisciplinary rehabilitation program were recruited. At pre-treatment, participants completed a battery of questionnaires assessing adult attachment styles and dimensions, as well as pain intensity, disability, self-efficacy, pain catastrophizing, and depressive symptoms. The latter measures were completed again at post-treatment. Nearly two-thirds of participants (65.5 %) reported having an insecure attachment style. Attachment insecurity was unrelated to pre- and post-treatment reports of pain intensity and pain-related disability, but was significantly associated with most other clinical variables at both time points. Regression analyses controlling for pre-treatment functioning indicated that attachment insecurity was associated with less improvement in pain catastrophizing, pain self-efficacy, and depressive symptoms. Further research is warranted to investigate the processes by which attachment characteristics influence patients' responses to chronic pain rehabilitation.


Subject(s)
Chronic Pain/psychology , Chronic Pain/rehabilitation , Cognitive Behavioral Therapy , Cooperative Behavior , Interdisciplinary Communication , Pain Management/methods , Pain Management/psychology , Reactive Attachment Disorder/psychology , Self Care/psychology , Adult , Aged , Catastrophization , Depression/diagnosis , Depression/psychology , Female , Humans , Male , Middle Aged , Pain Measurement/methods , Pain Measurement/psychology , Reactive Attachment Disorder/complications , Surveys and Questionnaires , Young Adult
7.
J Emerg Med ; 44(2): 413-422.e3, 2013 Feb.
Article in English | MEDLINE | ID: mdl-23089206

ABSTRACT

BACKGROUND: The Medical Priority Dispatch System (MPDS) is an emergency medical dispatch (EMD) system that is widely used to prioritize 9-1-1 calls and optimize resource allocation. MPDS is a computer-based EMD system that uses callers' responses to scripted questions to categorize cases into groups and subgroups, based on complaint and perceived acuity. OBJECTIVE: This study evaluates the ability of MPDS codes to predict prehospital use of medications. METHODS: All transported prehospital patients assigned a subgroup by MPDS from January 1, 2009 to December 31, 2009 in a diverse urban community were matched with their prehospital electronic patient care records. The records of transported patients dispatched through EMD were queried for prehospital interventions and matched to their MPDS classifications. Only MPDS subgroups with 10 or more calls were included in the analysis. RESULTS: A total of 38,005 patients met inclusion criteria. Patients with chest pain, breathing problems, heart problems, and diabetic problems received the most medications. Medications were administered in 19% of all calls. The individual MPDS subgroup with the highest rate of medication administration was 6E1A (breathing problems, 76%). Higher rates of Advanced Life Support (ALS) interventions in higher-acuity categories (e.g., Alpha, Bravo, Charlie) were seen in several EMD categories, including unconscious/fainting, breathing problems, and abdominal pain; but this was not observed in many other categories, including seizure, sick person, traumatic injury, and hemorrhage/lacerations. CONCLUSIONS: Medications were administered in 19% of all calls. There were higher rates of ALS interventions in higher-acuity categories that were not observed in many other categories.


Subject(s)
Drug Utilization/statistics & numerical data , Emergency Medical Service Communication Systems , Chest Pain/epidemiology , Cohort Studies , Diabetes Mellitus/epidemiology , Emergency Medical Services , Humans , Life Support Care , Patient Acuity , Respiration Disorders/epidemiology , Retrospective Studies , San Francisco/epidemiology , Urban Population
8.
Amyotroph Lateral Scler ; 13(1): 59-65, 2012 Jan.
Article in English | MEDLINE | ID: mdl-22214354

ABSTRACT

Our objective was to evaluate a single-session, hands-on education programme on mechanical ventilation for ALS patients and caregivers in terms of knowledge, change in affect and to determine whether ventilator decisions made after the education sessions predict those made later in life. Questionnaires were administered to 26 patients and 26 caregivers on four separate occasions. The questionnaires assessed knowledge of ventilatory support, feedback on the nature of the education programme, as well as self-reported emotional well-being. All patients were followed until their death or until initiation of invasive ventilation. Both groups demonstrated significant improvements in knowledge as a result of the education session which was retained after one month. There was no change in patient or caregiver reports' self-reported emotional well-being. The choices of ventilatory support expressed at one month (T4) accurately predicted the real-life clinical choices made by 76% of patients. Any difference resulted from choosing palliative care. Hands-on patient and caregiver education results in improved knowledge, assists in decision-making with respect to ventilatory support, and is not associated with a worsening of affect. It also provides for an accurate prediction of real-life choices and avoids undesired life support interventions and critical care admissions.


Subject(s)
Amyotrophic Lateral Sclerosis/therapy , Caregivers/psychology , Decision Making , Palliative Care/methods , Patient Education as Topic , Respiration, Artificial/psychology , Adult , Affect , Aged , Aged, 80 and over , Amyotrophic Lateral Sclerosis/physiopathology , Humans , Male , Middle Aged , Prospective Studies , Quality of Life , Respiration, Artificial/methods , Surveys and Questionnaires
9.
Pain Res Manag ; 2022: 4020550, 2022.
Article in English | MEDLINE | ID: mdl-35845983

ABSTRACT

Objectives: The purpose of this study was to compare the effects of group-delivered mindfulness-based stress reduction as compared to a waitlist control group among breast cancer survivors living with CNP. Methods: A randomized controlled trial design was applied, and outcomes collected included pain, emotional function, quality of life, and global impression of change. Results: A total of 98 women were randomized and included in analyses. The sample included 49 women in the mindfulness-based stress reduction group, and 49 women in the waitlist control group. The intervention group participants (mean age 51.3 years, standard deviation = 11.4) and waitlist participants (mean age 55.1 years, standard deviation = 9.6) reported an average pain duration of approximately three years. No significant differences were found on the primary outcome of the proportions of women with reduced pain interference scores from the time of randomization to 3 months after the intervention was received. No significant changes were found among secondary outcomes. Conclusion: Our randomized clinical trial did not find significant benefits of group-based mindfulness-based stress reduction for the management of CNP. The current study findings should be replicated and are important to consider given ongoing concerns that nonsignificant results of mindfulness-based stress reduction are often unpublished.


Subject(s)
Breast Neoplasms , Cancer Survivors , Mindfulness , Neuralgia , Breast Neoplasms/complications , Female , Humans , Middle Aged , Mindfulness/methods , Quality of Life/psychology , Stress, Psychological/etiology , Stress, Psychological/therapy
10.
Health Qual Life Outcomes ; 9: 29, 2011 May 09.
Article in English | MEDLINE | ID: mdl-21554723

ABSTRACT

BACKGROUND: Since the majority of stroke survivors return home following their stroke, families play a pivotal role in their care. Few studies have addressed both positive and negative aspects of this role or the broader construct of health-related quality of life (HRQL). Furthermore, little consideration has been given to the context of care in terms of relationship quality, and reciprocity. The present study examined the relationships between caregiver quality of life (HRQL), caregiver role, relationship satisfaction, balance and reciprocity in caregivers of partners who had experienced a stroke. Specific hypotheses were made based on equity theory in social relations. METHODS: Fifty-six partner caregivers completed a postal survey that included measures of HRQL (SF-36), caregiver role (negative and positive aspects), relationship satisfaction, reciprocity and balance. Data were also collected on the care recipients' quality of life (Stroke Specific Quality of Life scale). RESULTS: Compared to a normative sample, caregivers' HRQL was lower for all SF-36 domains. Care recipient and caregiver age, care recipient quality of life and caregiver role (negative) significantly predicted physical component summary scores on the SF-36, while care recipient quality of life and caregiver role (negative) significantly correlated with mental component summary scores. Relationship satisfaction and intrinsic rewards of caregiving were found to be important predictors of positive aspects of the caregiver role. Caregivers who viewed their relationship as less balanced in terms of give and take had significantly greater caregiver burden than those who viewed their relationship as more equitable. CONCLUSIONS: The study highlights the importance of taking a broader approach to examining partner caregiving in the context of stroke, in terms of the caregiving relationship and their influence on the health and well-being of caregivers.


Subject(s)
Caregivers/psychology , Quality of Life/psychology , Spouses/psychology , Stroke/nursing , Survivors/psychology , Adult , Aged , Aged, 80 and over , Cross-Sectional Studies , Data Collection , Female , Home Nursing , Humans , Interpersonal Relations , Male , Middle Aged , Ontario , Stroke Rehabilitation
11.
Pain Res Manag ; 16(6): 451-6, 2011.
Article in English | MEDLINE | ID: mdl-22184556

ABSTRACT

BACKGROUND: There is good support for the effectiveness of interdisciplinary chronic pain management programs in improving functional outcomes; however, relatively little is known about patients who report deterioration following participation in such programs. OBJECTIVES: The present retrospective study investigated patients' reports of increased pain severity during participation in a cognitive-behaviourally oriented, outpatient treatment for chronic pain. METHODS: Participants (n=280) completed a four-week, group-based, interdisciplinary chronic pain self-management program at a rehabilitation hospital. They completed pre- and post-treatment questionnaires, which included global change ratings of pain severity and clinically-relevant measures, including pain intensity ratings, functional limitations, pain catastrophizing and self-efficacy. RESULTS: Statistically significant pre-post improvements were observed for all study variables. Almost all patients reported global improvement overall. Nevertheless, a subset of patients (n=99) reported increased pain severity on global ratings. These individuals were characterized by lower self-efficacy at baseline. CONCLUSIONS: Participants endorsed significant pre- and post-treatment improvements in all domains. Nevertheless, some participants reported deterioration. The findings shed light on variables associated with negative treatment outcomes and have practical applications for interdisciplinary chronic pain management programs.


Subject(s)
Chronic Pain , Pain Management/methods , Pain Perception/physiology , Adult , Aged , Aged, 80 and over , Catastrophization/etiology , Chronic Pain/physiopathology , Chronic Pain/psychology , Chronic Pain/therapy , Cognition Disorders/etiology , Cognitive Behavioral Therapy/methods , Depression/etiology , Fear , Female , Humans , Male , Middle Aged , Multivariate Analysis , Pain Measurement , Retrospective Studies , Young Adult
12.
J Palliat Care ; 26(2): 112-21, 2010.
Article in English | MEDLINE | ID: mdl-20718396

ABSTRACT

The effect of a program to train clinicians to support patients making decisions about place of end-of-life care was evaluated. In all, 88 oncology and/or palliative care nursing and allied health providers from three Ontario health networks were randomly assigned to an education or control condition. Quality of decision support provided to standardized patients was measured before and after training, as were participants' perceptions about the acceptability of the training program and their intentions to engage in patient decision support. Compared to controls, intervention group members improved the quality of decision support provided and were more likely to address a wider range of decision-making needs. Intervention group members scored higher on a knowledge test of decision support than controls and rated the components as acceptable. Improvements in the quality of decision support can be made by providing training and practical tools such as a patient decision aid.


Subject(s)
Decision Making , Education, Continuing/methods , Palliative Care , Patient Preference , Professional-Patient Relations , Adult , Allied Health Personnel/education , Education, Distance , Female , Health Knowledge, Attitudes, Practice , Humans , Male , Neoplasms/therapy , Oncology Nursing/education , Ontario , Social Support
13.
Brain Inj ; 23(11): 879-87, 2009 Oct.
Article in English | MEDLINE | ID: mdl-20100124

ABSTRACT

PRIMARY OBJECTIVE: To explore the heterogeneity of mild traumatic brain injury (mTBI). METHODS AND PROCEDURES: Hospital-based prospective follow-up study of 125 patients with mTBI sub-divided into 'severity' sub-groups on the basis of GCS scores (GCS of 15 = mild sub-group; GCS of 13-14 = moderate sub-group). Post-traumatic amnesia (PTA) duration (30 minutes used as a cut-off) was also used to define group membership for secondary analyses. The follow-up assessment consisted of a brief neuropsychological battery as well as measures of neurobehavioural functioning, community integration and post-concussive symptomatology. CT scanning was also obtained when clinically relevant. MAIN OUTCOMES AND RESULTS: The two mTBI sub-groups, as defined by GCS scores, did not differ with respect to post-concussive symptomatology, neurobehavioural symptoms, neuropsychological performance or CT scan abnormalities. In contrast, when group membership was redefined on the basis of PTA, the two sub-groups differed significantly with respect to intracranial abnormalities and report of aggressive or disinhibited behaviours at the 6-month mark. CONCLUSIONS: While the notion of heterogeneity in mTBI was not supported when severity was based on GCS scores, there was partial support when PTA duration was used as a measure of severity.


Subject(s)
Amnesia/diagnosis , Brain Injuries/diagnosis , Cognition Disorders/diagnosis , Adult , Amnesia/etiology , Analysis of Variance , Brain Injuries/classification , Brain Injuries/complications , Cognition Disorders/etiology , Female , Glasgow Coma Scale , Humans , Male , Neuropsychological Tests , Prospective Studies , Severity of Illness Index , Surveys and Questionnaires
14.
Pain Res Manag ; 14(5): 365-70, 2009.
Article in English | MEDLINE | ID: mdl-19862371

ABSTRACT

BACKGROUND: Pain is a common problem for people with cancer who are nearing the ends of their lives. OBJECTIVE: In the present multicentre Canadian study of palliative cancer care, the prevalence of pain, its perceived severity and its correlates across a range of physical, social, psychological, and existential symptoms and concerns were examined. METHODS: Semistructured interviews were conducted with 381 patients. In addition to inquiring about pain, the interview also assessed 21 other symptoms and concerns, and collected information about demographic characteristics, functional status and medication use. RESULTS: Pain of any intensity was reported by 268 (70.3%) participants, although for 139 (36.5%), the severity was rated as minimal or mild. For 129 (33.9%) individuals, pain was reported as moderate to extreme, and considered by the respondents to be an important ongoing problem. Patients who reported moderate to extreme pain were younger than other participants, but had lower functional status and a shorter median survival duration. They were more likely than other participants to be treated with opioid medications (P<0.001) and, less reliably, with benzodiazepines (P=0.079). Compared with participants with no, minimal or mild pain, those with moderate to extreme pain had a higher prevalence of distressing problems on 11 of 21 other symptoms and concerns. The strongest correlations were with general malaise (rho = 0.44), suffering (rho = 0.40), nausea (rho = 0.34), weakness (rho = 0.31), drowsiness (rho = 0.29) and anxiety (rho = 0.29). CONCLUSIONS: Pain continues to be a difficult problem for many patients who are receiving palliative cancer care, particularly younger individuals who are nearing death.


Subject(s)
Pain Management , Pain/epidemiology , Palliative Care/methods , Palliative Care/statistics & numerical data , Aged , Aged, 80 and over , Canada/epidemiology , Demography , Female , Health Care Surveys , Humans , Interviews as Topic , Male , Middle Aged , Pain/complications , Pain Measurement , Prevalence , Severity of Illness Index , Statistics as Topic
15.
J Pain ; 20(1): 68-82, 2019 01.
Article in English | MEDLINE | ID: mdl-30172706

ABSTRACT

Limitations in physical function and participation are important domains of assessment in chronic pain. In 1995, the International Association for the Study of Pain distributed a self-report measure of functional limitations. Although the questionnaire has been used in research studies, it has never been subjected to a thorough investigation of its measurement properties. In this study, 941 patients with chronic pain completed the 16-item Limitations in Daily Activities Scale (LIDAS) at 2 pretreatment and 1 post-treatment assessment points. Individual item analysis favored a 13-item scale. This 13-item LIDAS had a confirmed 3-factor structure consisting of limitations in personal care, global participation, and specific tasks. Reliability analyses for the total scale (α = .90), as well as for each factor individually (αs = .82-.84), indicated good internal consistency, test-retest reliability (intraclass correlations = .65-.88 over varying time intervals), and responsiveness to change with treatment. LIDAS scores correlated as expected with measures of pain intensity, pain cognitions, and depression, as well as with other self-report and clinician-administered measures of functional performance. Using patient global ratings as anchors, a minimal clinically important difference of 5 points was established as a criterion for meaningful individual improvement after treatment. In conclusion, the LIDAS is a reliable, valid, and clinically relevant option for assessing limitations in physical function and participation in patients with chronic pain. PERSPECTIVE: Physical function and participation comprise a core dimension in the assessment of chronic pain. This study demonstrates that the LIDAS is a reliable and valid measure of this dimension, with good applicability for documenting clinically important change with treatment.


Subject(s)
Activities of Daily Living , Chronic Pain/diagnosis , Musculoskeletal Pain/diagnosis , Pain Measurement/standards , Psychometrics/standards , Severity of Illness Index , Adult , Chronic Pain/therapy , Female , Humans , Male , Middle Aged , Musculoskeletal Pain/therapy , Reproducibility of Results
16.
Clin Psychol Rev ; 28(3): 472-93, 2008 Mar.
Article in English | MEDLINE | ID: mdl-17804130

ABSTRACT

Understanding the factors that underlie existential suffering at the end of life has become the focus of a growing body of research. A number of studies have concluded that existential questions can be distressing for some patients. Other studies have shown that existential concerns are an important dimension of quality of life and can increase a patient's risk for suicidal ideation and desire for death. Over the years, a number of psychological interventions have been developed aimed at addressing such suffering in patients with cancer. In this paper, we review the evidence supporting the importance of existential concerns in terminally ill patients, describe eight manualized interventions explicitly addressing existential themes, and evaluate the effectiveness of these interventions. Similarities and differences between each intervention are noted, and clinical and empirical considerations are discussed.


Subject(s)
Existentialism/psychology , Manuals as Topic , Psychotherapy/methods , Terminal Care/methods , Terminally Ill/psychology , Attitude to Death , Cognitive Behavioral Therapy/methods , Female , Humans , Male , Neoplasms/psychology , Neoplasms/therapy , Palliative Care/methods , Palliative Care/psychology , Psychotherapy, Group/methods , Quality of Life , Stress, Psychological/psychology , Stress, Psychological/therapy , Suicide/psychology , Terminal Care/psychology
17.
J Pain Symptom Manage ; 35(1): 70-82, 2008 Jan.
Article in English | MEDLINE | ID: mdl-17981002

ABSTRACT

The purposes of the study were to examine the concordance between patients' and family caregivers' assessments of patients' symptoms, and to identify demographic and psychosocial factors that affect levels of agreement. Sixty-six patients with advanced cancer receiving palliative care, and their primary, informal caregivers assessed patients' symptoms using the Memorial Symptom Assessment Scale (MSAS). Levels of agreement for individual symptoms ranged from poor to excellent (interclass correlation coefficient 0.07-0.75). Analysis of the group means using paired t-tests revealed significant differences for the MSAS subscales (psychological, physical, and general distress index), and for four of the 12 physical symptoms and five of the six psychological symptoms. The magnitude of the observed differences indicated a small to moderate bias for caregivers to overestimate, which was more marked for psychological than for physical symptoms. A number of factors associated with the caregiver (particularly the emotional state, the burden of providing care, and male gender) and the patient (the perception of being a burden to others) were significantly correlated with levels of disparity on some measures. The findings are consistent with the growing body of literature on the validity of proxy respondents' assessments of patients' symptoms.


Subject(s)
Caregivers , Neoplasms/complications , Neoplasms/diagnosis , Adult , Aged , Aged, 80 and over , Cost of Illness , Emotions , Female , Humans , Male , Middle Aged , Neoplasms/psychology , Palliative Care , Patients , Socioeconomic Factors
18.
BMC Palliat Care ; 7: 4, 2008 Apr 30.
Article in English | MEDLINE | ID: mdl-18447916

ABSTRACT

BACKGROUND: Most people prefer home palliation but die in an institution. Some experience decisional conflict when weighing options regarding place of care. Clinicians can identify patients' decisional needs and provide decision support, yet generally lack skills and confidence in doing so. This study aims to determine whether the quality of clinicians' decision support can be improved with a brief, theory-based, skills-building intervention. THEORY: The Ottawa Decision Support Framework (ODSF) guides an evidence based, practical approach to assist clinicians in providing high-quality decision support. The ODSF proposes that decisional needs [personal uncertainty, knowledge, values clarity, support, personal characteristics] strongly influence the quality of decisions patients make. Clinicians can improve decision quality by providing decision support to address decisional needs [clarify decisional needs, provide facts and probabilities, clarify values, support/guide deliberation, monitor/facilitate progress]. METHODS/DESIGN: The efficacy of a brief education intervention will be assessed in a two-phase study. In phase one a focused needs assessment will be conducted with key informants. Phase two is a randomized control trial where clinicians will be randomly allocated to an intervention or control group. The intervention, informed by the needs assessment, knowledge transfer best practices and the ODSF, comprises an online tutorial; an interactive skills building workshop; a decision support protocol; performance feedback, and educational outreach. Participants will be assessed: a) at baseline (quality of decision support); b) after the tutorial (knowledge); and c) four weeks after the other interventions (quality of decision support, intention to incorporate decision support into practice and perceived usefulness of intervention components). Between group differences in the primary outcome (quality of decision support scores) will be analyzed using ANOVA. DISCUSSION: Few studies have investigated the efficacy of an evidence-based, theory guided intervention aimed at assisting clinicians to strengthen their patient decision support skills. Expanding our understanding of how clinicians can best support palliative patients' decision-making will help to inform best practices in patient-centered palliative care. There is potential transferability of lessons learned to other care situations such as chronic condition management, advance directives and anticipatory care planning. Should the efficacy evaluation reveal clear improvements in the quality of decision support provided by clinicians who received the intervention, a larger scale implementation and effectiveness trial will be considered. TRIAL REGISTRATION: This study is registered as NCT00614003.

19.
J Am Geriatr Soc ; 55(6): 878-84, 2007 Jun.
Article in English | MEDLINE | ID: mdl-17537088

ABSTRACT

OBJECTIVES: To determine whether persons with dementia are at greater driving risk and, if so, to estimate the magnitude of this risk and determine whether there are efficacious methods to compensate for or accommodate it. DESIGN: Systematic review of the literature. SETTING: Case-control studies. PARTICIPANTS: Drivers with a diagnosis of dementia. MEASUREMENTS: Most studies used state and caregiver reported crash rates, performance-based road tests, and driving simulator evaluations as their outcome measures. RESULTS: Twenty-three studies were included. Drivers with dementia universally exhibited poorer performance on road tests and simulator evaluations, although only one study using an objective measure of motor vehicle crashes was able to show that drivers with dementia were involved in more crashes than control subjects. No studies were found that examined the efficacy of methods to compensate for or accommodate their worse driving performance. CONCLUSION: Drivers with dementia are poorer drivers than cognitively normal drivers, but studies have not consistently demonstrated higher crash rates. Clinicians and policy makers must take these findings into account when addressing issues pertinent to drivers with a diagnosis of dementia.


Subject(s)
Accidents, Traffic/prevention & control , Accidents, Traffic/psychology , Automobile Driving/psychology , Dementia/psychology , Humans , Risk Assessment
20.
Surgery ; 141(1): 100-9, 2007 Jan.
Article in English | MEDLINE | ID: mdl-17188174

ABSTRACT

BACKGROUND: Surgeons, other healthcare professionals, and patients may identify different health-related concerns related to the quality of life of patients undergoing major surgery. METHODS: Semistructured interviews were conducted with surgeons (n =14), other healthcare professionals (n =19), and patients undergoing major elective surgery (n = 52). Themes were extracted by content analysis and organized into major domains. The frequencies with which specific themes were mentioned were compared among groups. RESULTS: A total of 85 themes were extracted from the interviews, 15 of which were mentioned by 50% or more of participants in each group, representing 5 of the 6 domains. The greatest differences were observed in the domains of social well-being, wherein 5 themes were mentioned less often by surgeons than other groups, and spiritual well-being, wherein 2 themes were mentioned more often by patients than other groups. Differences in the physical, emotional, cognitive preparation, and concern about quality of care domains were minimal. CONCLUSIONS: Surgeons, other healthcare professionals, and patients identified many similar concerns related to the well-being of patients undergoing major surgery. However, the importance of social and spiritual themes to patients may be underestimated by surgeons.


Subject(s)
Quality of Life , Surgical Procedures, Operative/psychology , General Surgery , Health Personnel , Humans , Interviews as Topic , Sampling Studies
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