Despite decades of pain research, substandard pain management continues to be distressingly prevalent across health-care settings. This integrative literature review analyzes and synthesizes barriers to effective pain management and identifies areas for future investigation in a Canadian context. Three sets of key barriers were identified through thematic analysis of 24 original research studies published in the period 2003-13: patient, professional, and organizational. These barriers rarely occurred in isolation, with many studies reporting examples in all three categories. This suggests that interventions need to reflect the multifactorial nature of pain management. Reframing pain education as a public health initiative could lead to sustainable improvement, as could the strengthening of partnerships between patients and health-care providers. There are tremendous opportunities for the advanced practice nurse to take a lead in pain management. The delivery of high-quality care that encompasses effective pain management strategies must be a priority for nursing. Research approaches, such as pragmatic mixed methods, that offer contextual understanding of how pain is managed are suggested.

The ketogenic diet (KD) is a nonpharmacologic treatment to reduce seizures with moderate to high success in pediatric patients with intractable epilepsy. Initiated in hospital, parents continue the treatment at home ensuring the ratio of high fat to low carbohydrate/protein is maintained to achieve metabolic ketosis. We conducted a systematic review to examine the quality of life (QoL) for families with a child using the KD for the reduction in epileptic seizures. A systematic review of the literature was conducted from 2007–2014 using key terms and combinations of: “epilepsy,” “ketogenic diet,” “children,” “family,” and “quality of life.” We accessed CINAHL, Medline, PubMed, and PsycINFO. After removing duplicates, we screened 598 papers by title and abstract. Articles comparing alternate diets such as the Atkins diet to the KD, or those focusing on the KD and societal costs, were excluded. Eighteen articles remained, including 7 intervention studies (randomized controlled trial and quasiexperimental), 7 descriptive studies (retrospective), 2 observational studies, and 2 case studies. Most participants were diagnosed with epilepsy at the age of 5 y, and had a trial of antiepileptic drugs (AEDs) and had been using the KD after discharge from the hospital. QoL was infrequently reported as a primary variable and was defined in a variety of ways. We found recurring themes that could affect QoL: efficacy of seizure reduction, nutritional status, child growth and development, and child and family psychosocial impact. The dominant psychological factor was the need for counseling for parents and clear expectations on expected outcomes. Nonadherence and dropout rates were frequent, but unfortunately the reasons and timing were not well documented, and some of these could be associated with QoL. The success of the KD in seizure reduction addressed a primary parental concern. Further research should address KD adherence and dropout rates, and investigate factors of quality of life.

Background To describe the process of patient engagement to co-design a patient experience survey for people with arthritis referred to central intake. Methods We used a participatory design to engage with patients to co-design a patient experience survey that comprised three connected phases: 1) Identifying the needs of patients with arthritis, 2) Developing a set of key performance indicators, and 3) Determining the survey items for the patient experience survey. Results Patient recommendations for high quality healthcare care means support to manage arthritis, to live a meaningful life by providing the right knowledge, professional support, and professional relationship. The concept of integrated care was a core requirement from the patients’ perspective for the delivery of high quality arthritis care. Patients experience with care was ranked in the top 10 of 28 Key Performance Indicators for the evaluation of central intake, with 95% of stakeholders rating it as 9/10 for importance. A stakeholder team, including Patient and Community Engagement Researchers (PaCER), mapped and rated 41 survey items from four validated surveys. The final patient experience survey had 23 items. Conclusion The process of patient engagement to co-design a patient experience survey, for people with arthritis, identified aspects of care that had not been previously recognized. The linear organization of frameworks used to report patient engagement in research does not always capture the complexity of reality. Additional resources of cost, time and expertise for patient engagement in co-design activity are recognized and should be included, where possible, to ensure high quality data is captured. Electronic supplementary material The online version of this article (10.1186/s12913-019-4196-9) contains supplementary material, which is available to authorized users.

Objective To describe a systems-level baseline evaluation of central intake (CI) and triage systems in arthritis care within Alberta, Canada. The specific objectives were to (1) describe a process for systems evaluation for the provision of arthritis care; (2) report the findings of the evaluation for different clinical sites that provide arthritis care; and (3) identify opportunities for improving appropriate and timely access based on the findings of the evaluation. Methods The study used a convergent mixed methods design. Surveys and semistructured interviews were the main data collection methods. Participants were recruited through 2 rheumatology clinics and 1 hip and knee clinic providing CI and triage, and included patients, referring physicians, specialists, and clinic staff who experienced CI processes. Results A total of 237 surveys were completed by patients (n = 169), referring physicians (n = 50), and specialists (n = 18). Interviews (n = 25) with care providers and patients provided insights to the survey data. Over 95% of referring physicians agreed that the current process of CI was satisfactory. Referring physicians and specialists reported issues with the referral process and perceived support in care for wait-listed patients. Patients reported positive experiences with access and navigation of arthritis care services but expressed concerns around communication and receiving minimal support for self-management of their arthritis before and after receiving specialist care. Conclusion This baseline evaluation of CI and triage for arthritis care indicates satisfaction with the service, but areas that require further consideration are referral completion, timely waiting lists, and further supporting patients to self-manage their arthritis.

Ortiz (2017) The suffering of chronic pain patients on a wait list: Are they amenable to narrative therapy?,