A Qualitative Pilot Study on Text Messaging Intervention for Weight Loss in Adults

Background Overweight and obesity are major risk factors for chronic illnesses such as cancer, diabetes and cardiovascular diseases. Newfoundland and Labrador (NL) has the highest rates of overweight and obesity of all provinces in Canada. Mobile health or mhealth in the form of text messaging is a potential solution to addressing the high overweight and obesity rates of the province. In this study, we explored NL residents’ perceptions of text message programs as an effective intervention for weight loss. Methods This study utilized a descriptive qualitative design through in-person semi-structured interviews with adults with previous or current experience in a weight loss program. Participants were recruited through recurrent postings on a biweekly school newsletter and study posters throughout the medical school at Memorial University. The data were analyzed using deductive thematic analysis. Results This pilot study included two participants, both women. The themes that arose in this study included past positive experiences, past negative experiences, barriers for weight loss, motivation for weight loss, attitudes about text messaging-based weight loss interventions and specific suggestions for future app development. The latter included text message content with reminders and encouragement, group messages, interactive and personal text messages and specific goal-setting in the app. Interpretation There were mixed attitudes towards using a text messaging based intervention. Findings revealed motivating factors of accountability, seeing positive physical bodily changes and goal-setting. Both participants had similar suggestions regarding future app development that involved creating a personalized and interactive experience for the users and to include a sense of community and communication across users of the app

Breast cancer surgical treatment choices in Newfoundland and Labrador, Canada: Patient and surgeon perspectives

Background. Breast cancer remains the second-leading cause of cancer death among Canadian women. Treatment for breast cancer often includes surgery. Many women have a choice between mastectomy (MT; removal of the entire breast) or breast conserving surgery (BCS; removal of the tumour and some noncancerous breast tissue) followed by radiation. However, Newfoundland and Labrador consistently has a higher rate of mastectomies than the rest of Canada. In this project, we aim to better understand that trend. Design and methods. A multi-method design was chosen. Surgical treatment data kept by the province will be examined to describe the number and types of breast cancer surgeries over time. Second, we will hold focus groups with women around the province who have made surgical treatment choices to explore influences on their decisions. Finally, semi-structured interviews with breast cancer surgeons and surgical residents will explore their opinions on surgical treatment choices. Expected impact for public health. Cancer treatment choices are complex decisions, affected by clinical, demographic and social variables. Understanding why women from Newfoundland and Labrador have the highest rate of mastectomy in Canada is critical to ensure they are receiving appropriate screening and care. Greater understanding of the influences on women’s surgical choices may encourage informed decisions amongst women and physicians and promote active communication about treatment, benefits relevant to all jurisdictions and health authorities. Further, if factors such as geographic proximity to treatment facilities are associated with treatment decisions, this information is important for public health screening and service planners

Patient education materials for non-specific low back pain and sciatica: a protocol for a systematic review and meta-analysis

Introduction Low back pain accounts for more disability than any other musculoskeletal condition and is associated with severe economic burden. Patients commonly present with negative beliefs about low back pain and this can have detrimental effects on their health outcomes. Providing evidence-based, patient-centred education that meets patient needs could help address these negative beliefs and alleviate the substantial low back pain burden. The primary aim of this review is to investigate the effectiveness of patient education materials on immediate process, clinical and health system outcomes. Methods and analysis The search strategy was developed in collaboration with a librarian and systematic searches will be performed in MEDLINE, EMBASE, CINAHL, PsycINFO and SPORTDiscus. We will also search trial registries and grey literature through the OpenGrey database. Study selection will include a title and abstract scan and full-text review by two authors. Only randomised controlled trials will be included in this review. Trials must include patients with low back pain or sciatica and investigate educational interventions with at least one of the following contrasts: (1) education alone versus no intervention; (2) education alone versus another intervention; (3) education in addition to another intervention versus the same intervention with no education. Data extraction, risk of bias and grading of the quality of evidence will be performed independently by two reviewers. Risk of bias will be assessed using the PEDro scale, and the quality of evidence will be assessed with the Grades of Recommendation, Assessment, Development and Evaluation approach. A random-effects model will be used for each contrast, and results will be pooled if the participants, interventions, and outcomes are homogeneous. If heterogeneity is high (I2 >75%), we will evaluate the magnitude and direction of the differences in effect sizes across studies to determine if it remains reasonable to pool the results. Analyses of acute and subacute low back pain (less than 12 weeks duration) will be performed separately from chronic low back pain (12 weeks or greater duration). Likewise, analyses of short-term (less than 6 months) and long-term (6 months or greater) follow-up will be performed separately. Subgroup analyses will be performed on non-specific low back pain, sciatica and mixed populations

“I think there has to be a mutual respect for there to be value”: Evaluating patient engagement in a national clinical trial on de-implementation of low value care

Abstract Background The evaluation of patient engagement in research is understudied and under-reported, making it difficult to know what engagement strategies work best and when. We provide the results of an evaluation of patient engagement in a large Canadian research program focused on the de-implementation of low-value care. We aimed to evaluate the experience and impact of patient engagement in the study. Methods An online cross-sectional survey was administered using Microsoft Forms to (1) researchers and study staff and (2) patient partners. The survey was developed following iterative reviews by the project’s patient partnership council and evaluation committee. Survey content areas included opinions on patient engagement to date, including challenges to engagement and suggestions for improvement. Patient partners also evaluated the partnership council. Descriptive statistics including counts and percentages described Likert scale survey items, while open comments were analyzed using descriptive content analysis. Results The survey response rate was 46% (17/37). There were positive attitudes about the value of patient engagement in this project. There was also a high degree of willingness to be involved with patient engagement in future projects, whether as a patient partner or as a researcher including patients on the research team. Most patient partners felt their contributions to the project were valued by researchers and study research staff. Open comments revealed that a co-design approach and full inclusion on the research team were integral to demonstrating the value of patient partner input. Areas for improvement included more frequent and ongoing communication among all team members, as well as earlier training about patient engagement, particularly addressing role expectations and role clarity. Conclusions Our data revealed that despite some challenges, team members recognized the value of patient engagement in research and agreed project decisions had been impacted by patient partner input. Ongoing communication was highlighted as an area for improvement, as well as earlier training and ongoing support for all team members, but particularly researchers and study staff. In response to evaluation data, the team has reinstated a quarterly newsletter and plans to use specific patient engagement planning templates across study sites for all project activities. These tools should help make expectations clear for all team members and contribute to a positive patient engagement experience. Findings can inform patient engagement planning and evaluation for other health research projects.Plain English Summary Evaluating patient engagement in research is often not done or not reported, making it hard to know what engagement strategies work best and when. Here, we provide the results of an evaluation of patient engagement in a Canadian Institutes for Health Research (CIHR) Strategy for Patient Oriented Research (SPOR) Innovative Clinical Trial Multi-Year Grant. The project focuses on strategies to reduce two low-value care practices (pre-operative testing in low-risk day surgery and imaging for low back pain). An online survey was sent to project researchers, study staff and patient partners to get their opinions on the patient engagement in the project. Generally, there were positive attitudes about the value of patient engagement in the project. Both patient partners and research study staff were very willing to be involved with patient engagement in future projects. Most patient partners felt their contributions to the project were valued by researchers and study research staff. An important part of showing the value of patient partners was working together to design the project and making sure that the patient partners were considered full members of the research team. Areas for improvement included better communication among all team members and earlier training about patient engagement with a focus on patient roles and expectations. The results from this survey will be used to improve the patient engagement in this project but will also help patient engagement planning and evaluation for other health research projects

Reflections on the Cost of Low-Cost Whole Genome Sequencing: Framing the Health Policy Debate

The cost of whole genome sequencing is dropping rapidly. There has been a great deal of enthusiasm about the potential for this technological advance to transform clinical care. Given the interest and significant investment in genomics, this seems an ideal time to consider what the evidence tells us about potential benefits and harms, particularly in the context of health care policy. The scale and pace of adoption of this powerful new technology should be driven by clinical need, clinical evidence, and a commitment to put patients at the centre of health care policy

What behaviour change techniques have been used to improve adherence to evidence-based low back pain imaging?

Background Despite international guideline recommendations, low back pain (LBP) imaging rates have been increasing over the last 20 years. Previous systematic reviews report limited effectiveness of implementation interventions aimed at reducing unnecessary LBP imaging. No previous reviews have analysed these implementation interventions to ascertain what behaviour change techniques (BCTs) have been used in this field. Understanding what techniques have been implemented in this field is an essential first step before exploring intervention effectiveness. Methods We searched EMBASE, Ovid (Medline), CINAHL and Cochrane CENTRAL from inception to February 1, 2021, as well as and hand-searched 6 relevant systematic reviews and conducted citation tracking of included studies. Two authors independently screened titles, abstracts, and full texts for eligibility and extracted data on study and intervention characteristics. Study interventions were qualitatively analysed by three coders to identify BCTs, which were mapped to mechanisms of action from the theoretical domains framework (TDF) using the Theory and Techniques Tool. Results We identified 36 eligible studies from 1984 citations in our electronic search and a further 2 studies from hand-searching resulting in 38 studies that targeted physician behaviour to reduce unnecessary LBP imaging. The studies were conducted in 6 countries in primary (n = 31) or emergency care (n = 7) settings. Thirty-four studies were included in our BCT synthesis which found the most frequently used BCTs were ‘4.1 instruction on how to perform the behaviour’ (e.g. Active/passive guideline dissemination and/or educational seminars/workshops), followed by ‘9.1 credible source’, ‘2.2 feedback on behaviour’ (e.g. electronic feedback reports on physicians’ image ordering) and 7.1 prompts and cues (electronic decision support or hard-copy posters/booklets for the office). This review highlighted that the majority of studies used education and/or feedback on behaviour to target the domains of knowledge and in some cases also skills and beliefs about capabilities to bring about a change in LBP imaging behaviour. Additionally, we found there to be a growing use of electronic or hard copy reminders to target the domains of memory and environmental context and resources. Conclusions This is the first study to identify what BCTs have been used to target a reduction in physician image ordering behaviour. The majority of included studies lacked the use of theory to inform their intervention design and failed to target known physician-reported barriers to following LBP imaging guidelines

Lynch syndrome: barriers to and facilitators of screening and disease management

Background Lynch syndrome is a hereditary cancer with confirmed carriers at high risk for colorectal (CRC) and extracolonic cancers. The purpose of the current study was to develop a greater understanding of the factors influencing decisions about disease management post-genetic testing. Methods The study used a grounded theory approach to data collection and analysis as part of a multiphase project examining the psychosocial and behavioral impact of predictive DNA testing for Lynch syndrome. Individual and small group interviews were conducted with individuals from 10 families with the MSH2 intron 5 splice site mutation or exon 8 deletion. The data from confirmed carriers (n = 23) were subjected to re-analysis to identify key barriers to and/or facilitators of screening and disease management. Results Thematic analysis identified personal, health care provider and health care system factors as dominant barriers to and/or facilitators of managing Lynch syndrome. Person-centered factors reflect risk perceptions and decision-making, and enduring screening/disease management. The perceived knowledge and clinical management skills of health care providers also influenced participation in recommended protocols. The health care system barriers/facilitators are defined in terms of continuity of care and coordination of services among providers. Conclusions Individuals with Lynch syndrome often encounter multiple barriers to and facilitators of disease management that go beyond the individual to the provider and health care system levels. The current organization and implementation of health care services are inadequate. A coordinated system of local services capable of providing integrated, efficient health care and follow-up, populated by providers with knowledge of hereditary cancer, is necessary to maintain optimal health

I have the gene, but I don't have Huntington disease: negotiating genetic risk

In the emerging risk society (Beck, 1992), healthy bodies, rather than the sick or diseased, are the focus of medical attention. Nowhere is this more evident than in the field of predictive genetic testing. Few empirical studies of predictive testing have explored the everyday reality of living at risk for a fatal inherited disorder. Fewer still have focused on those already living with such a disorder and their caregivers. Drawing upon 24 semi-structured interviews with at-risk persons and their family members, this study examined the implications of living at risk for, or with, the adult-onset disorder, Huntington disease (HD). Qualitative data analysis revealed that genetic risk was not understood or retained as an objective numerical fact, much as it is constructed so by Mendelian genetics. Rather, genetic risk for HD was re-conceptualized as an index of threat to self and other family members. Discussion about genetic risk for HD was infused with emotions and moral undertones; the latter reflected a felt obligation to other family members. As such, decisions around genetic risk were sometimes constrained by perceived responsibility to others in the family. Living with risk for HD or with the illness itself had noticeable effects on self-identity and relationships with others. While the response of social others was often sympathy, perceived stigma did exist in relation to HD, affecting communication about the illness and sometimes restricting social behavior. Implications for research and clinical practice are discussed

Decisions about prophylactic gynecologic surgery: a qualitative study of the experience of female Lynch syndrome mutation carriers

Background Women who carry a mutation for Lynch syndrome face complex decisions regarding strategies for managing their increased cancer risks. At present, there is limited understanding of the factors influencing women’s prophylactic surgery decisions. Methods As part of an exploratory pilot project, semi-structured interviews were conducted with 10 women who were Lynch syndrome mutation carriers and had made prophylactic surgery decisions. Nine of 10 women had chosen to undergo prophylactic hysterectomy and/or oophorectomy as a means of managing their increased gynecological cancer risks. Results Study findings revealed that surgery decisions were influenced by multiple factors, including demographic variables such as age and parity, as well as psychosocial factors such as cancer worry, in addition to personal and social knowledge of gynecological cancer. While all women were satisfied with their surgery decision, some reported they were not fully informed about the negative impact on their quality of life post-surgery (e.g., complications of surgically-induced menopause), nor about the potential for, or risks and benefits of, hormone replacement therapy. Conclusions Study findings highlight some of the factors associated with prophylactic surgery decisions and women’s perceptions about pre-surgical information provision and needs. Suggestions are made for improving the information and support provided to female carriers of a Lynch syndrome mutation