What do primary care providers think about implementing breast cancer survivorship care?

Purpose: As cancer centres move forward with earlier discharge of stable survivors of early-stage breast cancer (bca) to primary care follow-up, it is important to address known knowledge and practice gaps among primary care providers (pcps). In the present qualitative descriptive study, we examined the practice context that influences implementation of existing clinical practice guidelines for providing such care. The purpose was to determine the challenges, strengths, and opportunities related to implementing comprehensive evidence-based bca survivorship care guidelines by pcps in southeastern Ontario. Methods: Semi-structured interviews were conducted with 19 pcps: 10 physicians and 9 nurse practitioners. Results: Thematic analysis revealed 6 themes within the broad categories of knowledge, attitudes, and resources. Participants highlighted 3 major challenges related to providing bca survivorship care: inconsistent educational preparation, provider anxieties, and primary care burden. They also described 3 major strengths or opportunities to facilitate implementation of survivorship care guidelines: tools and technology, empowering survivors, and optimizing nursing roles. Conclusions: We identified several important challenges to implementation of comprehensive evidence-based survivorship care for bca survivors, as well as several strengths and opportunities that could be built upon to address those challenges. Findings from our research could inform targeted knowledge translation interventions to provide support and education for pcps and bca survivors.

Is the emergency department an appropriate substitute for primary care for persons with traumatic spinal cord injury?

STUDY DESIGN: Retrospective cohort with linkage of administrative data sets. OBJECTIVES: To describe the patterns (for example, number of visits by year post-injury) and characteristics of the emergency department (ED) visits (for example, acuity level, timing of visits, reasons for visits) made by persons with traumatic spinal cord injury (TSCI) over a 6-year period following injury. SETTINGS: Ontario, Canada. METHODS: Rates of ED utilization and reasons for ED visits were calculated between the fiscal years 2003-2009. Reasons for visits were categorized by acuity level: potentially preventable visits were defined as visits related to ambulatory sensitive conditions; low acuity and high acuity visits were defined by the Canadian Triage and Acuity Scale. RESULTS: The total number of ED visits for the 6-year period is 4403 (n=1217). Of these visits, 752 (17%) were classified as potentially preventable, 1443 (33%) as low acuity and 2208 (50%) as high acuity. The majority of patients, regardless of acuity level, did not see a primary care practitioner on the day of the ED visit and most visits occurred during the weekday (Mon-Fri 0700-1659 hours). ED use was highest in the first year but remained high over the subsequent years. For potentially preventable visits, the majority of visits were related to urinary tract infections (n=385 visits, 51.2%), followed by pneumonia (n=91, 12.1%). CONCLUSION: Given the high rates of ED use for low acuity and potentially preventable conditions, these results suggest that the ED is being used as an inappropriate substitute for primary care for individuals with TSCI 50% of the time.

Establishing evidence-based physical activity guidelines: methods for the Study of Health and Activity in People with Spinal Cord Injury (SHAPE SCI).

STUDY DESIGN: Prospective, observational cohort study. OBJECTIVES: This paper describes the rationale and methodology for the Study of Health and Activity in People with Spinal Cord Injury (SHAPE SCI). The study aims to (1) describe physical activity levels of people with different injury levels and completeness, (2) examine the relationship between physical activity, risk and/or presence of secondary health complications and risk of chronic disease, and (3) identify determinants of physical activity in the SCI population. SETTING: Ontario, Canada. METHODS: Seven hundred and twenty men and women who have incurred a traumatic SCI complete self-report measures of physical activity, physical activity determinants, secondary health problems and subjective well-being during a telephone interview. A representative subsample (n=81) participate in chronic disease risk factor testing for obesity, insulin resistance and coronary heart disease. Measures are taken at baseline, 6 and 18 months. CONCLUSION: SHAPE SCI will provide much-needed epidemiological information on physical activity patterns, determinants and health in people with SCI. This information will provide a foundation for the establishment of evidence-based physical activity guidelines and interventions tailored to the SCI community.

Utilization, access and satisfaction with primary care among people with spinal cord injuries: a comparison of three countries.

STUDY DESIGN: Cross-sectional; survey. OBJECTIVES: To describe the utilization, accessibility and satisfaction of primary and preventive health-care services to individuals with long-term spinal cord injuries, and compare results among three countries: the United States, Canada and the United Kingdom. SETTING: The Canadian sample was obtained from the Canadian Paraplegic Association-Ontario and Manitoba Divisions. The British sample was recruited from the Northwest Regional Spinal Injuries Centre in Southport and National Spinal Injuries Centre at Stoke Mandeville Hospital in Aylesbury. The American sample was recruited through Craig Hospital in Englewood, CO, USA. METHOD: A total sample of 373 individuals aging with a spinal cord injury participated in a mailed survey. The Health Care Questionnaire was used to measure utilization, access and satisfaction with primary care and preventive services. RESULTS: In total, 93% of individuals reported having a family doctor, 63% had a spinal injuries specialist and 56% had both a family doctor and spinal injuries specialist. Considerable duplication of services occurred for general medical and preventive services, although lifestyle and emotional issues were not addressed for over 75% of the participants. Significant differences were found in utilization among Canada, US and UK, with Canadians most likely to receive health care from family physicians and Americans most likely to receive care from specialists. Access to and satisfaction with health services was not significantly different among countries. CONCLUSION: People with long-standing spinal cord injuries develop complex maps by which they seek out appropriate primary health-care and preventive services. Given the differences among countries, it is clear that the health delivery model plays an important role in how and where individuals receive health services.

Returning to productive activities: Perspectives of individuals with long-standing acquired brain injuries.

PRIMARY OBJECTIVE: The primary objective of this study was to understand how intrinsic and extrinsic factors influence productive involvement over time. RESEARCH DESIGN: Given this relatively unexplored area of study, an interpretive research paradigm was incorporated using the grounded theory methodology. METHODS AND PROCEDURES: Six participants were recruited based on inclusion criteria. They had been living with a brain injury for an average of 14 years. The primary method of data collection was semi-structured interviews, which was supplemented by programme reports to enhance methodological triangulation. RESULTS: The results revealed that factors influencing involvement in productive activities over time were conceptually linked to learning about one's capacity. These factors involved: an opportunity to try, support and feedback from others, experimenting, and participants' appraisals of themselves. CONCLUSIONS: Recommendations for clinical practice include incorporating the postulates of the social cognitive theory in rehabilitation and moving from a deficits approach towards a strengths model of practice.

Multiple risk behaviour and its association with head and neck injuries: a national analysis of young Canadians.

BACKGROUND: Among adolescents, risk behaviors often cluster together and lead to risk behaviour syndromes. Multiple risk behaviors in turn become important determinants of health outcomes, including injuries. METHODS: A national sample (n = 11,415) of Canadian youth aged 11-15 years was examined from the 1997-1998 Health Behaviour in School-Aged Children Survey. Principal components analyses were used to characterize how adolescent risk behaviors cluster together into factors. Associations between these behavioral factors and injury outcomes were explored via multiple logistic regression analyses. RESULTS: Two factors of risk behaviors emerged: lifestyle risks and psychological risks. Strong associations between the lifestyle risk scale and the occurrence of head and neck injuries were identified (P < 0.001 for trend). The relative odds for the highest quintile versus the lowest quintile were 6.96 (95% CI: 3.95-12.26). Similar injury risks were not identified in association with the psychological risk scale. CONCLUSIONS: The findings provide novel information about potential causes of injury to young people and provide a reliable method by which researchers can quantify two determinants of health. These are helpful for injury control research in that they provided a means by which health risk behaviors can be measured and then related to the injury experiences of young people.

Disability advocacy organizations: a descriptive framework.

PURPOSE: The purpose of this paper is to offer a descriptive framework to analyse the participation of people with disabilities in policy advocacy over the past 20 years. METHODS: The study used a qualitative research design to describe and analyse organizations participating in policy advocacy on behalf of people with disabilities in Canada between 1981 and the present. Data for the study were assembled through interviews with key informants who had participated in three policy cases: the Charter of Rights and Freedoms, 1982 (federal); the Canada Clause of the Charlottetown Accord, 1991 (federal); the Ontario Consent to Treatment, Advocacy and Substitute Decision-making bills, 1993-1995 (provincial). For each of the three cases, key informants were identified who could report with authority on the participation of individuals or groups representing people with disabilities. Interviews with key informants were conducted by the investigators, transcribed and coded to produce five dimensions along which advocates described their organizations. RESULTS: Three ideological dimensions were identified to describe organizations representing people with disabilities: purpose, tactics, and view of disability. Two practical dimensions were also identified: membership and resources. Each of these dimensions is described in detail with quotes from the interviews to illustrate. DISCUSSION AND CONCLUSIONS: These five dimensions result in a descriptive framework for discussion and comparison of organizational characteristics of advocacy organizations representing people with disabilities. Further, the framework affords a vehicle for discussion of the relative success of policy participation on issues affecting the lives of people with disabilities.

International differences in ageing and spinal cord injury.

DESIGN: The present study is part of a programme of longitudinal research on ageing and spinal cord injury involving three populations - American, British and Canadian. The design was multivariate. OBJECTIVE: To identify international differences in outcomes associated with ageing and spinal cord injury. SETTING: A sample of 352 participants was assembled from five large, well-established databases. The Canadian sample was derived from the member database of the Canadian Paraplegic Association (Ontario and Manitoba divisions). The British sample was recruited from Southport Hospital's Northwest Regional Spinal Injuries Centre and Stoke-Mandeville Hospital's National Spinal Injuries Centre. The American sample has been recruited through Craig Hospital in Denver, Colorado. METHODS: The sample included individuals who had incurred a spinal cord injury at least 20 years previously; were admitted to rehabilitation within 1 year of injury; were between age 15 and 55 at the time of injury. Data were collected using a combination of self-completed questionnaires and interviews. Data included medical information, general health, hospitalisations, and changes in bladder and bowel management, equipment, pain, spasticity, the need for assistance, and other health issues. RESULTS: Clear international differences existed between the three samples in the three different countries. After controlling for sampling differences (ie, differences in age, level of lesion, duration of disability, etc.), the following differences were seen: (1) American participants had a better psychological profile and fewer health and disability-related problems; (2) British participants had less joint pain and less likelihood of perceiving they were ageing more quickly; (3) Canadians had more health and disability-related complications (particularly bowel, pain and fatigue problems). CONCLUSION: These differences are discussed in terms of socio-political, health care system and cultural factors that might be used to explain them, and to generate hypotheses for future research.

Defining community integration of persons with brain injuries as acculturation: a Canadian perspective.

In this study, the AIMS, a measure of community integration developed from acculturation theory, was used to explore the various ways that people with brain injuries, a smaller cultural or minority group, are involved with the larger cultural group and to evaluate rehabilitation outcome (i.e., reintegration into the community). Specifically, the AIMS assesses whether the needs of individuals with brain injuries in a number of areas are identified and supported in a way that supports community participation. In addition, the opinions of persons with a brain injury regarding their level of community integration were compared to the opinions of individuals who knew them well. The results of this study indicate that while a large proportion of the participants with brain injuries were integrated in traditional areas of service delivery such as medical services, housing and social activity, their disability-related needs were not being identified and supported adequately in the areas of spirituality and productive activity.

The community integration measure: development and preliminary validation.

OBJECTIVE: To present a new measure of community integration, the Community Integration Measure (CIM), and to offer preliminary information about its psychometric properties. DESIGN: Validation study. SETTING: Community. PARTICIPANTS: Ninety-two participants placed in 3 subgroups (brain injury survivors, n = 41; significant others, n = 36; college students, n = 15). MAIN OUTCOME MEASURES: The distributional properties, factor structure, internal consistency reliability, content validity, discriminant validity, concurrent validity, and construct validity of the CIM. RESULTS: All items correlated positively with each other and with the total score. Principal components factor analysis confirmed a 1-factor structure, which explained 44.1% of the variance. Internal consistency reliability, using Cronbach's alpha, was.87. Content validity was assured by the development procedure, correspondence with the theoretical model, and direct use of consumer language. Discriminant validity was supported by the CIM's ability to differentiate between subsamples. Criterion validity was supported by using correlations with the Community Integration Questionnaire. Construct validity was supported by correlations with the Interpersonal Support Evaluation List. CONCLUSION: The CIM offers a brief, easily administered measure of community integration that conforms to an empirically derived theoretical model and is psychometrically sound.

Long-term health-related quality of life in survivors of sepsis. Short Form 36: a valid and reliable measure of health-related quality of life.

OBJECTIVE: To describe the long-term health-related quality of life (HRQL) of survivors of sepsis and to evaluate the reliability and validity of the medical outcomes study Short Form-36 (SF-36) in this population. STUDY DESIGN: Cross-sectional survey. SETTING: University intensive care unit. PATIENTS: Surviving patients over the age of 17 yrs who met the criteria for the Society of Critical Care Medicine/American College of Chest Physicians definition of sepsis identified through a review of patients admitted to the intensive care unit from 1994 to 1998. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Baseline demographics and clinical characteristics were abstracted from the medical chart. After hospital discharge, the SF-36 and Patrick's Perceived Quality of Life scale were administered by telephone. The SF-36 was readministered 2 wks later. We screened the charts of 109 patients; 78 had a diagnosis of sepsis. Of these, 31 had died, 3 had severe communication problems, 9 refused to participate, and 5 patients could not be located. A total of 30 patients completed the first interview; 26 completed the second. Compared with established norms for the U.S. general population, survivors of sepsis scored significantly lower on the physical functioning, role physical, general health, vitality, and social functioning domains, as well as on the Physical Health Summary Scale. Mean scores on the Mental Health Summary Scale were very similar between the survivors of sepsis and U.S. norms. The SF-36 demonstrated high internal consistency (Cronbach's alpha ranged from 0.65 to 0.94) and excellent test-retest stability (intraclass correlation coefficient ranged from 0.75 to 0.97). Both the Physical Health Summary Scale and the Mental Health Summary Scale correlated well with overall Perceived Quality of Life scores (Pearson correlation coefficients 0.45 and 0.56, respectively). CONCLUSIONS: The long-term HRQL of survivors of sepsis is significantly lower than that of the general U.S. population. The SF-36 demonstrated good reliability and validity when used to measure HRQL in survivors of sepsis.

Spiritual issues associated with traumatic-onset disability.

PURPOSE: The present study used a qualitative approach to discover the concepts used by people with a sudden-onset disability to express issues of spirituality. Using a cross-sectional time frame, the study sought to understand how spiritual issues were experienced at the onset of a disability from the perspective of the disabled person him or herself. The study also compared the perceptions of brain injury respondents to spinal cord injury respondents. METHOD: The qualitative approach was chosen to capture a detailed understanding of perceptions about spirituality, and the relationship of the disability to the disabled person's spiritual beliefs. The sample consisted of 16 individuals, all of whom had experienced a spinal cord injury or a brain injury. RESULTS: The main findings of the study were as follows: (1) Participants recovering from a disability described spiritual issues relating to five themes which arose directly from the data (awareness, closeness, trust, purpose, vulnerability) and relating to three relationships found throughout the literature on spirituality (intrapersonal, interpersonal and transpersonal). These eight dimensions can be combined to form a matrix, which serves as a framework for considering spiritual issues associated with disability; and (2) There were differences in the spiritual concepts described by the participants with brain injury compared to those with spinal cord injury. In particular, those with brain injuries seemed to place greater emphasis on the importance of their families, and to be more aware of the need for trust in view of their memory deficits. CONCLUSIONS: These results represent one of the earliest attempts to take an empirical approach to the development of theory in the area of spirituality and disability. Building on theory developed in other populations (palliative care and ageing), the study offers a theoretical model for clinicians, educators and researchers to better understand spirituality in the context of disability.

Changes in spiritual beliefs after traumatic disability.

OBJECTIVES: To discover the effect of sudden-onset disability on spirituality, specifically, to investigate changes following the onset of disability in spiritual concepts and to outline a theoretical framework consisting of relationships with the self, others, the world, and a supreme power. STUDY DESIGN: The study used a cross-sectional, qualitative approach to understand changes in spirituality from the perspective of the disabled person. Intensive semistructured interviews were conducted with 16 participants, each of whom had either a spinal cord injury or brain injury, within the 2-year period after discharge from rehabilitation. Changes in spiritual concepts were explored in relation to 3 types of relationships (intrapersonal, interpersonal, and transpersonal) and 5 themes (awareness, closeness, trust, purpose, and vulnerability). RESULTS: Specific changes in spirituality described by sample members were: greater awareness of the self; a change in their view of their own independence; a sense of purpose in life that was not present before the onset of the disability; greater awareness of their own mortality and vulnerability; a new understanding of trust, especially when depending on others; loss of some significant relationships; greater appreciation and closeness with others and the world; and greater understanding of other disadvantaged groups. CONCLUSIONS: The interviews portrayed a significant ability to conceptualize issues in a spiritual context in the 2-year period after discharge from rehabilitation. Further, the changes reported suggest a positive effect of spirituality in the adjustment period following onset.

Validity and community utility of the Canadian Occupational Performance Measure.

This study addressed the validity and community utility of the Canadian Occupational Performance Measure (COPM) (Law et al., 1991; 1994; 1998): a measure that now represents a national standard in clinical practice and research in occupational therapy in Canada. The study employed a crossectional design. Participants for the study were former consumers of occupational therapy services, recruited from the Queen's University catchment area (Kingston, North Bay, Oshawa, Perth, Peterborough). A sample of 61 disabled individuals living in the community were recruited. Each individual was sent a package of self-administered measures including the Satisfaction with Performance Scaled Questionnaire, the Reintegration to Normal Living Index, the Life Satisfaction Questionnaire, and the Perceived Problems List. An interview was also arranged with the project coordinator, which was based on the COPM and the Consumer Utility Questionnaire. Multivariate analyses showed that construct validity was supported; scores on the COPM were significantly related to theoretically related constructs: satisfaction with performance, reintegration to normal living and life satisfaction. In addition, criterion validity was supported. A majority of participants (53%), when asked about problems of daily living, spontaneously reported at least one of the problems raised on the COPM. Community utility was evaluated highly by participants, 75% of whom found the COPM useful in identifying and rating their problems, and 100% of whom reported no problems in understanding the COPM.

Coping with community reintegration after severe brain injury: a description of stresses and coping strategies.

A basic qualitative approach was used to describe the stresses and coping strategies of 11 adults with severe brain injury during a critical period of reintegrating into a new community. Subjects identified nine problems as stressful. The stresses conform to a theoretical model of community integration, consisting of four factors: social support, independent living, occupation, and a general integration factor. These stresses identified by subjects may be used in the development of a new measure of stress for persons with brain injury. Subjects used eight coping strategies to deal with these stresses. The coping strategies represent a sampling of three major types of coping: problem-focused, perception-focused, and emotion-focused. The findings show that subjects made more use of problem-focused coping strategies than any other type of coping, suggesting that persons with brain injury have awareness of the problems they face and the ability to assert some control over eliminating or managing these problems. The stresses and coping strategies are consistent with existing studies involving persons with brain injury. However, significant differences in some coping strategies reported in this study change how some forms of coping are thought about. The findings delineate the need for professionals to assist persons with brain injury develop more positive, adaptive coping strategies.

Expectations of independence and life satisfaction among ageing spinal cord injured adults.

PURPOSE: The present study offers information about independence and life satisfaction over the lifespan for individuals with traumatic spinal cord injuries. METHODS: The study uses the health expectancy methodology to estimate expectations of the remaining years of life that may be spent in states of independence and satisfaction with life. SUBJECTS: The cohort studied had all incurred a spinal cord injury between the ages of 25 and 34, between the years 1945 and 1990 in central and south-eastern Ontario. RESULTS AND CONCLUSIONS: The study found that levels of independence and quality of life in the sample conformed closely to those found in other similar studies with the spinal cord injured population: 22% reported their own functional status as dependent, and 22% reported fair to poor life satisfaction. Expectations of independence appeared to decline steadily over the five decades studied, while expectations of modified independence increased proportionally. Estimates varied significantly for those with paraplegia vs. quadriplegia, and those with complete vs. incomplete lesions. Expectations of life satisfaction appeared to change after the 30 year mark; at that point, the balance changed so that expectations of dissatisfaction outweighed expectations of satisfaction. Multiple regression showed that independence was related to lesion level, completeness and recency of injury, and both independence and satisfaction were related to marriage and employment.

Transitions to independent living after ABI.

One of the most challenging questions facing service providers and policy makers alike is the appropriate level of supervision for adults living in the community following a brain injury. In a 3-year province-wide study of people entering the community following brain injury rehabilitation, four individuals (out of 22 studied) made a transition from fully supervised living to lower levels of formal supervision during their first year in the community. The present study seeks to provide more information about these four individuals, the factors that allowed them to move to lower levels of supervision, and the perceived success of that transition. For each participant, the interviews conducted over the 1 year period in the initial study were reviewed in detail for information about independent living. In addition, each participant was interviewed again for this study, along with his significant other and three of the community programme staff who were most closely involved with his transition. To summarize, factors most salient in the success of transition included: (1) Roles and relationships of family and programme personnel; (2) staying away from drugs and alcohol; (3) availability of structured daily activities, including productive activity or community programme; (4) financial management; and (5) emotion and behaviour self-control. Secondary themes related to successful community living also included the availability of transportation and prior experience with community living since the onset of brain injury. These results offer the experience of four individuals in moving towards independent living. As such, they provide a starting point for further discussions of the process of supporting individuals to pursue the ultimate goal of independent living.

Expectations of health, independence, and quality of life among aging spinal cord-injured adults.

While our understanding of aging and mortality in spinal cord injury is evolving, precise estimates are still not available to assist people with spinal cord injuries in knowing what to expect as they grow older. The work of a number of authors suggests that the life expectancy of those with spinal cord injuries is improving. However, little is known about the conditions in which individuals may expect to spend their remaining years of life. This study used information from a 50-year database on spinal cord injury, in combination with national mortality statistics and new survey information, to estimate the number of remaining years that individuals could expect to spend in a variety of states of health, independence, and quality of life. The study showed that expectations of health are similar to those found in the general population. Regardless of total life expectancy, individuals could expect to spend about six of their remaining years in poor health, presumably near the end of life. Expectations of independence varied depending on lesion level. Those with paraplegia became less independent over time, moving from complete to modified independence. Those with quadriplegia appeared to have a greater expectation of independence over time; however, in actuality, only those who were most independent survived to report outcomes at older ages. Expectations of quality of life remained high until the fifth decade postinjury.