Keith G. Wilson

A Burden to Others: A Common Source of Distress for the Terminally Ill

Recent research into the desire for death among people with terminal illness has begun to recognize the importance of “feeling oneself a burden to others” as a factor in suicidal behaviour. In this study, 69 patients with advanced cancer underwent semi‐structured interviews. The sense of self‐perceived burden was found to be a common experience, reported by 39.1% of participants as a minimal or mild concern and by 38% as a moderate to extreme concern. The sense of burden showed a low correlation with physical symptoms (ru2009u200a=u200au20090.02–0.24) and higher correlations with psychological problems (ru2009u200a=u200au20090.35–0.39) and existential issues (ru2009u200a=u200au20090.45–0.49). Comparisons of participants with high or low levels of self‐perceived burden showed the importance of this factor for overall quality of life. In summary, self‐perceived burden is an important but underestimated dimension of social cognition in the medically ill.

Ottawa Panel Evidence-Based Clinical Practice Guidelines for Aerobic Fitness Exercises in the Management of Fibromyalgia: Part 1

Background and Purpose: The objective of this study was to create guidelines for the use of aerobic fitness exercises in the management of adult patients (>18 years of age) with fibromyalgia, as defined by the 1990 American College of Rheumatology criteria. Methods: Following Cochrane Collaboration methods, the Ottawa Methods Group found and synthesized evidence from comparative controlled trials and formed the Ottawa Panel, with nominated experts from key stakeholder organizations. The Ottawa Panel then developed criteria for grading the recommendations based on experimental design (I for randomized controlled trials, II for nonrandomized studies) and strength of evidence (A, B, C+, C, D+, D, or D−). From the rigorous literature search, 13 randomized control trials and 3 controlled clinical trials were selected. Statistical analysis was based on Cochrane Collaboration methods. Continuous data were calculated with weighted mean differences between the intervention and control groups, and dichotomous data were analyzed with relative risks. Clinical improvement was calculated using absolute benefit and relative difference in change from baseline. Clinical significance was attained when an improvement of 15% relative to a control was found. Results: There were 24 positive recommendations: 10 grade A, 1 grade B, and 13 grade C+. Of these 24 positive recommendations, only 5 were of clinical benefit. Discussion and Conclusion: The Ottawa Panel recommends aerobic fitness exercises for the management of fibromyalgia as a result of the emerging evidence (grades A, B, and C+, although most trials were rated low quality) shown in the literature.

Desire for euthanasia or physician-assisted suicide in palliative cancer care

OBJECTIVEnTo investigate the attitudes of terminally ill individuals toward the legalization of euthanasia or physician-assisted suicide (PAS) and to identify those who would personally desire such a death.nnnDESIGNnIn the Canadian National Palliative Care Survey, semistructured interviews were administered to 379 patients who were receiving palliative care for cancer. Patients who expressed a desire for physician-hastened death were followed prospectively.nnnMAIN OUTCOME MEASURESnAttitudes toward the legalization of euthanasia or PAS were determined, as was the personal interest in receiving a hastened death. Demographic and clinical characteristics were also recorded, including a 22-item structured interview of symptoms and concerns.nnnRESULTSnThere were 238 participants (62.8%) who believed that euthanasia and/or PAS should be legalized, and 151 (39.8%) who would consider making a future request for a physician-hastened death. However, only 22 (5.8%) reported that, if legally permissible, they would initiate such a request right away, in their current situations. This desire for hastened death was associated with lower religiosity (p=.010), reduced functional status (p=.024), a diagnosis of major depression (p<.001), and greater distress on 12 of 22 individual symptoms and concerns (p<.025). In follow-up interviews with 17 participants, 2 (11.8%) showed instability in their expressed desire.nnnCONCLUSIONnAmong patients receiving palliative care for cancer, the desire to receive euthanasia or PAS is associated with religious beliefs; functional status; and physical, social, and psychological symptoms and concerns. Although this desire is sometimes transitory, once firmly established, it can be enduring.

Structured Interview Assessment of Symptoms and Concerns in Palliative Care

Objective: Assessment in palliative care requires a multidimensional review of physical symptoms and psychosocial concerns in a format appropriate for patients with advanced illness. In this study, we describe the initial development and validation of a structured interview for assessing common symptoms and concerns faced by terminally ill individuals. Method: We constructed a 13-item Structured Interview for Symptoms and Concerns (SISC) based on a review of end-of-life issues and administered it to 69 patients receiving palliative care for advanced cancer. Along with the interview, each participant completed visual analog scales (VAS) addressing the same constructs. Test–retest and interrater reliability were determined, as was the concordance between interview ratings and VAS scores. Results: Overall, the interview items had excellent interrater reliability (intraclass correlations were > 0.90) and at least moderate temporal stability (test–retest correlations ranged from 0.50 to 0.90). Concurrent validity was evident in the good concordance between interview items and VAS measures (correlations were > 0.70). The SISC was also sensitive to individual differences between subgroups of participants who did or did not meet diagnostic criteria for anxiety or depressive disorders. Conclusions: This study demonstrates that structured interviews provide a reliable and valid approach to assessment in palliative care and may be an appropriate alternative for some research applications.

Ottawa Panel Evidence-Based Clinical Practice Guidelines for Strengthening Exercises in the Management of Fibromyalgia: Part 2

Background and Purpose: The objective of this study was to create guidelines for the use of strengthening exercises in the management of adult patients (>18 years of age) with fibromyalgia (FM), as defined by the 1990 American College of Rheumatology criteria. Methods: Following Cochrane Collaboration methods, the Ottawa Methods Group found and synthesized evidence from comparative controlled trials and formed the Ottawa Panel, with nominated experts from key stakeholder organizations. The Ottawa Panel then developed criteria for grading the recommendations based on experimental design (I for randomized controlled trials, II for nonrandomized studies) and strength of evidence (A, B, C+, C, D+, D, or D−). From the rigorous literature search, 5 randomized controlled trials were selected. Statistical analysis was based on Cochrane Collaboration methods. Continuous data were calculated with weighted mean differences between the intervention and control groups, and dichotomous data were analyzed with relative risks. Clinical improvement was calculated using absolute benefit and relative difference in change from baseline. Clinical significance was attained when an improvement of 15% relative to a control was found. Results: There were 5 positive recommendations: 2 grade A and 3 grade C+. All 5 were of clinical benefit. Discussion and Conclusion: The Ottawa Panel recommends strengthening exercises for the management of fibromyalgia as a result of the emerging evidence (grades A, B, and C+, although most trials were rated low quality) shown in the literature.

Stress and coping with advanced cancer.

OBJECTIVEnFor people with advanced cancer, the months preceding death can be very stressful. Moreover, cancer-related stressors can arise within multiple dimensions. However, little research has examined how people cope differentially with different types of stressors. The goal of this study was to examine patterns of coping across different dimensions of stress.nnnMETHODnFifty-two patients who were receiving palliative care for cancer were asked to indicate their most significant stressors within social, physical, and existential dimensions. A structured interview was then conducted to describe how the participants coped with these stressors.nnnRESULTSnOverall, stressor severity ratings were correlated significantly across the three dimensions, although physical symptoms received the highest mean rating. Participants generally used a range of coping strategies to deal with their stressors, but there were clear differences across dimensions in the relative use of problem-focused versus emotion-focused strategies. Problem-focused coping was less frequent for existential issues, whereas emotion-focused strategies were used less frequently for physical stressors. Coping efforts were not clearly related to psychological distress.nnnSIGNIFICANCE OF RESULTSnAlthough coping is an important research theme within psycho-oncology, it may be overly broad to ask, How do people cope with cancer? In fact, different cancer-related stressors are coped with in very different ways. There is not necessarily any particular pattern of coping that is best for relieving psychological distress.

A cost effective, community based heart health promotion project in England: prospective comparative study.

Abstract Objective: To determine whether a community based coronary heart disease health promotion project, undertaken over four years, was associated with changes in the prevalence in adults of lifestyle risk factors known to affect the development of coronary heart disease, and to estimate whether such an approach was cost effective. Design: Prospective, comparative study of the effects of a health promotion intervention on coronary heart disease lifestyle risk factors, assessed by postal questionnaire sent to a randomly chosen sample, both at baseline and after four years. Subjects: Intervention and control populations of adults aged 18-64 in Rotherham, both from areas with a high incidence of coronary heart disease and similar socioeconomic composition. Main outcome measures: Changes in prevalence of lifestyle risk factors between the control and intervention communities from 1991 to 1995. The effect of the intervention on certain lifestyle behaviours was evaluated using multiple logistic regression to model the proportion with a particular behaviour in the study communities as a function of age (18-40 or 41-64 years), sex, the year of observation (1991 or 1995), and area (intervention or control). Results: 6.9% fewer people smoked and 8.7% more drank low fat milk in the intervention area, but no other statistically significant changes between the areas were detected. The estimated cost per life year gained was £31. Conclusions: It is possible to have a cost effective impact on coronary heart disease lifestyle risk factors in a population of adults over four years using only modest resources. Key messages Little is known about the cost effectiveness of focused, heart disease health promotion projects in reducing cardiovascular risk factors over a short period in small populations of adults Research was undertaken to estimate the impact of a heart disease health promotion project—Action Heart—and relate the cost to estimates of health gain Major differences were observed in changes in prevalence of active smoking and consumption of low fat milk between the intervention and control areas over four years The estimated cost per life year gained was £31 Further research is required to ascertain whether the changes in risk factors will be sustained after the end of Action Heart

Concordance in goal setting between patients with multiple sclerosis and their rehabilitation team

Bloom LF, Lapierre NM, Wilson KG, Curran D, DeForge DA, Blackmer J: Concordance in goal setting between patients with multiple sclerosis and their rehabilitation team. Am J Med Phys Rehabil 2006;85:807–813. Objective:To determine the concordance between patients with multiple sclerosis and their clinical team members on the identification of goals for an inpatient rehabilitation stay. Design:Prospective cohort study of patients admitted for rehabilitation in an adult inpatient neurospinal unit at a Rehabilitation Centre in Ottawa, Canada. Twenty-seven patients (11 men and 16 women, mean age of 45.3 yrs) with either a laboratory or a clinically supported diagnosis of multiple sclerosis. Patients rated 55 goals from a preexisting list, indicating the importance of each goal to be addressed during the inpatient stay. The goals fell into five broad domains of health/medical issues, daily activities, mobility, community life, and personal well-being. Patients also identified their five most important individual goals. In a separate session, the clinical team also rated the 55 goals in relation to each patient and identified an independent list of the five most important rehabilitation goals. Main outcome measures included concordance between patient and team ratings in the identification of goals, ratings of the likelihood of success of achieving each goal, and ratings of the amount of change required to realize a minimal clinically important difference. Results:The patients and the team agreed on an average of 1.7 of the patients five top-rated goals. Compared with the team, patients gave higher importance ratings to goals within the health/medical, mobility, and daily activities domains. They also considered that a greater average improvement would be required to achieve a meaningful benefit, and they gave higher ratings of the likelihood of success in achieving their selected goals. Conclusion:Patients with multiple sclerosis and clinical team members do not necessarily agree on specific goals for a rehabilitation stay. Patients may also have greater expectations than clinicians with respect to the amount of improvement and the likelihood of achieving their goals.

The heterogeneity of mild traumatic brain injury: Where do we stand?

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.

Fear of pain in patients with advanced cancer or in patients with chronic noncancer pain.

ObjectivesPain is one of the most prevalent symptoms in patients with advanced cancer and, according to anecdotal reports, perhaps the most feared. Surprisingly, fear of pain has been the subject of little research within cancer care. The literature on chronic noncancer pain, however, suggests that fear of pain contributes to limitations in function in populations with diverse chronic illness. Little is known about the extent to which such findings might generalize from patients with chronic noncancer pain to those with chronic cancer pain. Therefore, this research examined the extent to which fear of pain is associated with limitations in function in patients with advanced cancer and also compared patients with chronic cancer and noncancer pain. MethodsWe recruited 117 patients with advanced cancer who received a referral for pain management and 118 patients with a primary complaint of chronic noncancer pain. Participants completed self-report questionnaires. ResultsFindings revealed similarities between the groups for fear of pain and limitations in function, but they differed on level of depression and pain severity (patients with noncancer pain were more depressed and reported higher pain severity). Fear of pain independently predicted limitations in function in both groups controlling for demographic variables and pain severity. When depression and physical symptoms were controlled, fear of pain predicted limitations in function only in patients with advanced cancer. DiscussionThe findings emphasize the importance of psychological dimensions of pain in patients with advanced cancer, as well as the similarities and differences between the 2 groups of patients suffering from chronic pain.