Non-Pharmacological Approaches for Pain Management in Sickle Cell Disease: Development of a Mindfulness-Based Intervention

Background: Sickle Cell Disease (SCD) is a genetic hematological disorder that affects more than 7 million people globally (NHLBI, 2009). It is estimated that 50% of adults with SCD experience pain on most days, with 1/3 experiencing chronic pain daily (Smith et al., 2008). Persons with SCD also experience higher levels of pain catastrophizing (feelings of helplessness, pain rumination and magnification) than other chronic pain conditions, which is associated with increases in pain intensity, pain behavior, analgesic consumption, frequency and duration of hospital visits, and with reduced daily activities (Sullivan, Bishop, & Pivik, 1995; Keefe et al., 2000; Gil et al., 1992 & 1993). Therefore effective interventions are needed that can successfully be used manage pain and pain-related outcomes (e.g., pain catastrophizing) in persons with SCD. A review of the literature demonstrated limited information regarding the feasibility and efficacy of non-pharmacological approaches for pain in persons with SCD, finding an average effect size of .33 on pain reduction across measurable non-pharmacological studies. Second, a prospective study on persons with SCD that received care for a vaso-occlusive crisis (VOC; N = 95) found: (1) high levels of patient reported depression (29%) and anxiety (34%), and (2) that unemployment was significantly associated with increased frequency of acute care encounters and hospital admissions per person. Research suggests that one promising category of non-pharmacological interventions for managing both physical and affective components of pain are Mindfulness-based Interventions (MBIs; Thompson et al., 2010; Cox et al., 2013). The primary goal of this dissertation was thus to develop and test the feasibility, acceptability, and efficacy of a telephonic MBI for pain catastrophizing in persons with SCD and chronic pain.

Methods: First, a telephonic MBI was developed through an informal process that involved iterative feedback from patients, clinical experts in SCD and pain management, social workers, psychologists, and mindfulness clinicians. Through this process, relevant topics and skills were selected to adapt in each MBI session. Second, a pilot randomized controlled trial was conducted to test the feasibility, acceptability, and efficacy of the telephonic MBI for pain catastrophizing in persons with SCD and chronic pain. Acceptability and feasibility were determined by assessment of recruitment, attrition, dropout, and refusal rates (including refusal reasons), along with semi-structured interviews with nine randomly selected patients at the end of study. Participants completed assessments at baseline, Week 1, 3, and 6 to assess efficacy of the intervention on decreasing pain catastrophizing and other pain-related outcomes.

Results: A telephonic MBI is feasible and acceptable for persons with SCD and chronic pain. Seventy-eight patients with SCD and chronic pain were approached, and 76% (N = 60) were enrolled and randomized. The MBI attendance rate, approximately 57% of participants completing at least four mindfulness sessions, was deemed acceptable, and participants that received the telephonic MBI described it as acceptable, easy to access, and consume in post-intervention interviews. The amount of missing data was undesirable (MBI condition, 40%; control condition, 25%), but fell within the range of expected missing outcome data for a RCT with multiple follow-up assessments. Efficacy of the MBI on pain catastrophizing could not be determined due to small sample size and degree of missing data, but trajectory analyses conducted for the MBI condition only trended in the right direction and pain catastrophizing approached statistically significance.

Conclusion: Overall results showed that at telephonic group-based MBI is acceptable and feasible for persons with SCD and chronic pain. Though the study was not able to determine treatment efficacy nor powered to detect a statistically significant difference between conditions, participants (1) described the intervention as acceptable, and (2) the observed effect sizes for the MBI condition demonstrated large effects of the MBI on pain catastrophizing, mental health, and physical health. Replication of this MBI study with a larger sample size, active control group, and additional assessments at the end of each week (e.g., Week 1 through Week 6) is needed to determine treatment efficacy. Many lessons were learned that will guide the development of future studies including which MBI strategies were most helpful, methods to encourage continued participation, and how to improve data capture.

Challenges, Strengths and Opportunities Related to Implementing Comprehensive Evidence-Based Guidelines on Breast Cancer Survivorship Care by Primary Care Physicians and Nurse Practitioners in Southeastern Ontario

Background Many breast cancer survivors continue to have a broad range of physical and psychosocial problems after breast cancer treatment. As cancer centres move forward with earlier discharge of stable breast cancer survivors to primary care follow-up it is important that comprehensive evidence-based breast cancer survivorship care is implemented to effectively address these needs. Research suggests primary care providers are willing to provide breast cancer survivorship care but many lack the knowledge and confidence to provide evidence-based care. Purpose The overall purpose of this thesis was to determine the challenges, strengths and opportunities related to implementing comprehensive evidence-based breast cancer survivorship guidelines by primary care physicians and nurse practitioners in southeastern Ontario. Methods This mixed-methods research was conducted in three phases: (1) synthesis and appraisal of clinical practice guidelines relevant to provision of breast cancer survivorship care within the primary care practice setting; (2) a brief quantitative survey of primary care providers to determine actual practices related to provision of evidence-based breast cancer survivorship care; and (3) individual interviews with primary care providers about the challenges, strengths and opportunities related to provision of comprehensive evidence-based breast cancer survivorship care. Results and Conclusions In the first phase, a comprehensive clinical practice framework was created to guide provision of breast cancer survivorship care and consisted of a one-page checklist outlining breast cancer survivorship issues relevant to primary care, a three-page summary of key recommendations, and a one-page list of guideline sources. The second phase identified several knowledge and practice gaps, and it was determined that guideline implementation rates were higher for recommendations related to prevention and surveillance aspects of survivorship care and lowest related to screening for and management of long-term effects. The third phase identified three major challenges to providing breast cancer survivorship care: inconsistent educational preparation, provider anxieties, and primary care burden; and three major strengths or opportunities to facilitate implementation of survivorship care guidelines: tools and technology, empowering survivors, and optimizing nursing roles. A better understanding of these challenges, strengths and opportunities will inform development of targeted knowledge translation interventions to provide support and education to primary care providers.

An Evidence-Based Approach to Access Reform (Working Paper 22)

In August 2000, the federal government began an internal review of the Access to Information Act (ATIA). The ATIA gives Canadians a qualified right of access to records held by federal institutions. Decisions about reform should be based on good evidence about the operation of the Act and the likely impact of proposed reforms. This paper describes how data on ATIA operations is collected by federal institutions and provides a guide to academic researchers interested in conducting empirical research on the operation of the law. It constructs a small dataset that describes the processing of a sample of 663 requests received in 1999, and uses this dataset to illustrate the potential of an evidence-based approach to ATIA reform. The dataset can be downloaded from http://evidence.foilaw.net. The project was supported by a $4,800 grant from the Principal’s Development Fund of Queen’s University awarded in May 2001. Comments should be sent to the principal investigator, Alasdair Roberts, at roberts@policystudies.ca.

Newham’s Every Child a Sports Person (NECaSP): A Summative Process Evaluation of a School-and-Community Based Intervention in East London, UK

Background: The NECaSP intervention aspires to increase sport and physical activity (PA) participation amongst young people in the UK. The aims of this paper are to report on a summative process evaluation of the NECaSP and make recommendations for future interventions. Methods: Seventeen schools provided data by students aged 11-13 (n=1,226), parents (n=192) and teachers (n= 14) via direct observation and questionnaires. Means, standard deviations and percentages were calculated for socio-demographic data. Qualitative data was analysed via directed content analysis and main themes identified. Results: Findings indicate further administrative, educational and financial support will help facilitate the success of the programme in improving PA outcomes for young people, and of other similar intervention programmes globally. Data highlighted the need to engage parents to increase likelihood of intervention success. Conclusions: One main strength of this study is the mixed-methods nature of the process evaluation. It is recommended that future school based interventions that bridge sports clubs and formal curriculum provision, should consider a more broad approach to the delivery of programmes throughout the academic year, school week and school day. Finally, changes in the school curriculum can be successful once all parties are involved (community, school, families).

Preventing type 2 diabetes : a guide to refer your patients with prediabetes to an evidence-based diabetes prevention program

This document describes steps to take in preventing type 2 diabetes. Included is a risk test, a prediabetes screening test and BMI calculation chart.

A universally delivered CBT based intervention in a Scottish secondary school: a pilot feasibility study

Objectives: To evaluate the feasibility of a universally delivered CBT-based programme for pupils within a Scottish secondary school setting. Design: A pre-post, within and between groups design was utilised. Setting: Religious Moral Citizenship and Education (RMCE) classes in a Scottish secondary school. Participants: Four (n = 103) classes of third year secondary school pupils were arbitrarily allocated to two conditions: RMCE-as usual (RMCE-AU) controls, and LLTTF intervention. Intervention: Living Life to the Full (LLTTF) is a series of Cognitive Behavioural Therapy (CBT)-based booklets and accompanying 8 classes to improve coping skills. An adolescent version of LLTTF was recently developed. This was delivered over nine weeks by school teachers trained in the approach. Outcome measures: The Strengths and Difficulties Questionnaire, Rosenberg Self-Esteem scale, General Self-Efficacy Scale, and Locus of Control scale were administered at baseline and 9 week follow-up. To determine acceptability and utility of the materials course feedback was gathered weekly from the intervention group and a focus group (n=5) was conducted at 3 month follow up. Results: Outcome measures showed no significant improvement in overall wellbeing of those in the intervention group compared with that of the control group. Weekly feedback suggested that the majority of pupils found the materials useful and relevant. Focus group feedback suggested that pupils found the intervention useful, had utilised strategies in everyday life and would welcome recurring provision of such interventions within the school setting. Conclusions: Universally delivered CBT intervention is acceptable and feasible within the secondary school environment. However, objective measurement using standardised tools does not adequately corroborate qualitative feedback from pupils. Issues relating to measurement, study design and implementation of future interventions are discussed.

Access, attitudes and training in information technologies and evidence-based medicine among medical students at University of Zimbabwe College of Health Sciences.

Background: The Medical Education Partnership Initiative, has helped to mitigate the digital divide in Africa. The aim of the study was to assess the level of access, attitude, and training concerning meaningful use of electronic resources and EBM among medical students at an African medical school. Methods: The study involved medical students at the University of Zimbabwe College of Health Sciences, Harare. The needs assessment tool consisted of a 21-question, paper-based, voluntary and anonymous survey. Results: A total of 61/67 (91%), responded to the survey. 60% of the medical students were ‘third-year medical students’. Among medical students, 85% of responders had access to digital medical resources, but 54% still preferred printed medical textbooks. Although 25% of responders had received training in EBM, but only 7% found it adequate. 98% of the participants did not receive formal training in journal club presentation or analytical reading of medical literature, but 77 % of them showed interest in learning these skills. Conclusion: Lack of training in EBM, journal club presentation and analytical reading skills have limited the impact of upgraded technology in enhancing the level of knowledge. This impact can be boosted by developing a curriculum with skills necessary in using EBM.