Cognitive and neurobehavioral symptoms in patients with non-metastatic prostate cancer treated with androgen deprivation therapy or observation: A mixed methods study.

BACKGROUND: Few studies have investigated prostate cancer patients' experiences of cognitive functioning or neurobehavioral symptoms (i.e., behavioral changes associated with neurological dysfunction) following androgen deprivation therapy (ADT). METHODS: Semi-structured interviews conducted from the US by phone and in-person were used to explore and characterize the: 1) experience of cognitive and neurobehavioral functioning in non-metastatic prostate cancer patients undergoing ADT (n = 19) compared with patients who had not undergone ADT (n = 20); 2) perceived causes of cognitive and neurobehavioral symptoms; 3) impact of these symptoms on quality of life; and 4) strategies used to cope with or compensate for these symptoms. Neuropsychological performance was assessed to characterize the sample. RESULTS: Overall, ADT patients experienced marginally more cognitive problems than non-ADT (nADT) patients even though there were no significant differences between groups in neuropsychological performance. ADT patients also experienced more declines in prospective memory and multi-tasking than nADT patients. Significant proportions of participants in both groups also experienced retrospective memory, attention and concentration, and information processing difficulties. With respect to neurobehavioral symptoms, more ADT patients experienced emotional lability and impulsivity (both aspects of disinhibition) than nADT patients. Among the causes to which participants attributed declines, both groups attributed them primarily to aging. A majority of ADT patients also attributed declines to ADT. For both groups, increased cognitive and neurobehavioral symptoms negatively impacted quality of life, and most participants developed strategies to ameliorate these problems. CONCLUSION: ADT patients are more vulnerable to experiencing specific cognitive and neurobehavioral symptoms than nADT patients. This study highlights the importance of capturing: a) cognitive symptoms not easily detected using neuropsychological tests; b) neurobehavioral symptoms that can be confused with psychological symptoms, and c) causal beliefs that may affect how people cope with these symptoms. Effective interventions are needed to assist prostate cancer patients in managing these symptoms.

Stroke survivors talk while doing: development of a therapeutic framework for continued rehabilitation of hand function post stroke.

STUDY DESIGN: Qualitative study to identify themes and explore mechanisms underlying recovery of hand function post stroke for individuals discharged from rehabilitation services. PURPOSE OF THE STUDY: Post-stroke hemiparesis frequently results in persistent hand dysfunction; the mechanisms of functional recovery are however poorly understood. We assessed the perspectives of community-dwelling individuals with chronic stroke on their hand function limitations and recovery to explore the feasibility of developing a theoretical framework for understanding the process of continued post-stroke recovery. METHODS: Eight subjects with chronic post-stroke hemiparesis were interviewed and videotaped while they performed a battery of 20 upper limb tasks. Qualitative analysis consisted of two investigators independently reviewing the videotapes and reading the transcribed conversations, identifying significant issues and then comparing their observations to determine common themes and develop emerging concepts. RESULTS: Four core themes pertaining to impairment and recovery of task-specific ability emerged: 1) spasticity can be overcome actively through task-specific attempts to use the affected arm and hand; 2) use of the affected arm can be facilitated by adopting positions that reduce the effect of gravity on the arm or enable gravity to act as a natural assist in the movement; 3) task-specific skill can be attained by repeatedly attempting specific component movements of tasks in the context of a variety of different tasks; and 4) frustration impedes task performance but a mental state of 'detached focus' can improve the motivation to use the affected arm. CONCLUSIONS: These themes suggest a therapeutic framework for continued upper limb rehabilitation in patients' own environment to maximize functional recovery in individuals long after their stroke, and generate hypotheses which may lead to the development of new therapeutic protocols. LEVEL OF EVIDENCE: NA.

Participation as an outcome measure in psychosocial oncology: content of cancer-specific health-related quality of life instruments.

PURPOSE: To examine to what extent the concept and the domains of participation as defined in the International Classification of Functioning, Disability and Health (ICF) are represented in general cancer-specific health-related quality of life (HRQOL) instruments. METHODS: Using the ICF linking rules, two coders independently extracted the meaningful concepts of ten instruments and linked these to ICF codes. RESULTS: The proportion of concepts that could be linked to ICF codes ranged from 68 to 95%. Although all instruments contained concepts linked to Participation (Chapters d7-d9 of the classification of 'Activities and Participation'), the instruments covered only a small part of all available ICF codes. The proportion of ICF codes in the instruments that were participation related ranged from 3 to 35%. 'Major life areas' (d8) was the most frequently used Participation Chapter, with d850 'remunerative employment' as the most used ICF code. CONCLUSIONS: The number of participation-related ICF codes covered in the instruments is limited. General cancer-specific HRQOL instruments only assess social life of cancer patients to a limited degree. This study's information on the content of these instruments may guide researchers in selecting the appropriate instrument for a specific research purpose.

The value of traditional reviews in the era of systematic reviewing.

Reviews offer examinations of published material on a topic, and are becoming indispensable in keeping up with an exponentially growing rehabilitation literature. Adherents of the systematic reviews that support evidence-based practice have been quite dismissive of narrative (traditional, qualitative, and nonsystematic) reviews. However, the types of problems that plague the latter may also be found in systematic reviews, which, in addition, have problems of their own. It is argued here that reviews play a number of roles in scientific research and professional practice such as answering specific clinical questions, pooling data, comparing research, synthesizing complementary studies, offering guidance in uncharted fields, and "translating" research between disciplinary traditions. For some of these purposes, systematic reviews are better; for others, a narrative review is more suitable. Both types can be improved to serve the reader better in keeping up with the literature.

Assessing fatigue after traumatic brain injury: an evaluation of the HIV-Related Fatigue Scale [corrected].

OBJECTIVES: To assess the suitability of the HIV-Related Fatigue Scale (BFS) [corrected] for assessment of posttraumatic brain injury (post-TBI) fatigue. DESIGN: Analysis of self-report data. SETTING: Community. PARTICIPANTS: 183 individuals with TBI in California, and 233 individuals with TBI and a comparison group of 85 persons without brain injury in New York. INTERVENTIONS: None. RESULTS: Both individuals with TBI and comparison participants reported high levels of fatigue on the Fatigue Severity Scale and the Fatigue Assessment Instrument, which can be scored from the BFS. Factor analysis of 40 BFS items resulted in 5 factors; because factors appeared to be based on both substantive issues and the format and location of the items, a BFS scoring algorithm was not pursued. The other 16 BFS items provided useful information in understanding post-TBI fatigue. CONCLUSIONS: The BFS in its current format is not recommended for assessing fatigue as a multidimensional entity after TBI. It may have utility for the 3 widely known fatigue measures that can be derived from it, and it generates information on the circumstances of fatigue.

Reliability of the Bryce/Ragnarsson spinal cord injury pain taxonomy.

BACKGROUND/OBJECTIVE: Pain is a common secondary complication of spinal cord injury (SCI). However, the literature offers varying estimates of the numbers of persons with SCI who develop pain. The variability in these numbers is caused in part by differences in the classification of pain; there is currently no commonly accepted classification system for pain affecting persons after SCI. This study investigated the interrater reliability of the Bryce/Ragnarsson SCI pain taxonomy (BR-SCI-PT). The hypothesis was that, when used by physicians with minimal training in the BR-SCI-PT, it would have high interrater reliability for the categorization of reported pains. METHODS: One hundred thirty-five vignettes, each of which described a person with SCI with one or more different etiologic subtypes of pain, were evaluated by 5 groups of up to 10 physicians with SCI subspecialization (39 respondents total). Physician classifications were compared with those made by the investigators. RESULTS: Of 179 pain descriptions, 83% were categorized correctly to one of the 15 BR-SCI-PT pain types; 93% were categorized correctly with respect to level (above/at/below neurological level of injury), whereas 90% were categorized correctly as being either nociceptive or neuropathic. Subjects expressed a generally high confidence in the correctness of their classifications. CONCLUSIONS: Substantial interrater agreement was achieved in determining subtypes of pain within the BR-SCI-PT. The agreement was improved for categorizing within less restrictive categories (ie, with respect to the neurological level of injury and whether the pain was nociceptive or neuropathic).

Quality of life of individuals with spinal cord injury: a review of conceptualization, measurement, and research findings.

Quality of life (QoL) is increasingly becoming a key concept in research and clinical services. However, no agreement exists on what QoL is and how it is to be measured. This paper reviews three different yet linked approaches to QoL conceptualization: QoL as subjective well-being; QoL as achievement; and QoL as utility. People with spinal cord injury (SCI) tend to report fewer feelings of well-being, on average, than nondisabled persons; score lower on physical, mental, and social health and in other domains of life that people consider important to life quality; and have a health state that is preferred much less than that of the average person. Many QoL instruments used in SCI research have not been validated for this group, or have questionable assumptions, and clinical applications of QoL measures still have many problems. Much SCI QoL research tends to be atheoretical.

Participation objective, participation subjective: a measure of participation combining outsider and insider perspectives.

BACKGROUND: Participation now replaces community integration or handicap as concepts reflecting the social and interpersonal aspects of disability. If rehabilitation is to adequately measure participation, new measures of participation are needed. To represent the voice of the consumer, such measures should reflect not just "objective," normative aspects, but also subjective ones, tapping the consumer's view of participation. OBJECTIVES: To describe the development of and preliminary metrological information on a new measure of participation, Participation Objective, Participation Subjective (POPS). METHODS: A total of 454 community-living individuals with traumatic brain injury (TBI) completed the POPS, as well as measures of quality of life (Life 3), depressive mood (BDI), and TBI symptoms (BISQ). The POPS requires reporting of the share of household activities performed, or the frequency or hours of nonhousehold activities. For each, the subject indicates whether he or she wants to perform more, the same, or less of the activity, and the importance of the activity to well-being. Five subscales and a total scale are calculated, for an objective component (PO), and a subjective component (PS) that reflects importance-weighted satisfaction with activity level. RESULTS: Individuals with mild TBI scored minimally higher than those with moderate-severe TBI on PO subscores, but desired more change on the PS. Test-retest reliability for the PO and the PS and the subscales was from weak (intraclass correlation coefficient 0.28) to adequate (0.89), with PS components having better reliability. The PS component scores had the expected correlations with TBI symptoms, depressed mood, and life satisfaction, among both those with mild injury and those with moderate-severe injury. Injury severity and time since onset were not related to PO or PS scores. CONCLUSIONS: The POPS shows promise as a measure of participation. It fills a void in that it reflects both insider and outsider perspectives on participation after TBI.

Psychometrics and clinimetrics in assessing environments. A comment suggested by Mackenzie et al., 2002.

Psychometrics is the name commonly used for the principles and methods of developing valid and reliable measures of intelligence, attitudes, skills, and other characteristics. One focus of psychometrics is the homogeneity of the items selected to measure the (unidimensional) latent construct of interest. Clinical scientists often use operationalizations of constructs that incorporate multiple dimensions, which may be quantified using only a single indicator. The difference between the two approaches is significant enough that Feinstein proposed a new science, clinimetrics. Homogeneity of items is of limited importance in clinimetrics, and construct indicators may be "causal" rather than "effectual." In measuring environments of individuals, the clinimetric approach seems more appropriate than the psychometric one. An article by Mackenzie et al. (J Allied Health 2002; 31:222-228) is used to show how adhering to psychometric models may suggest analytical procedures that are misleading. Some principles of the clinimetric method are set forth.