A Win-Win for Sport and Exercise Medicine and Primary Care: A Qualitative Case Study of the Added Competence Model in Canada.

OBJECTIVE: To understand the unique impacts of the College of Family Physicians of Canada's (CFPC) Certificate of Added Competence (CAC) in Sport and Exercise Medicine (SEM) on the delivery of comprehensive care in Canada. DESIGN: Secondary analysis of qualitative interview data collected during a multiple case study of the impacts of the CAC program in Canada. SETTING: Six cases purposively sampled from across Canada. Each case was bound by a collective of healthcare providers who work with a defined group of patients. PARTICIPANTS: Across the cases, 48 individuals participated, including SEM and other enhanced skill family physicians, generalist family physicians, residents, specialists, and administrative staff. MAIN OUTCOME MEASURES: Qualitative descriptions of the impacts of the SEM certificate on comprehensive care provision in Canada. RESULTS: SEM certificate holders experience enhanced well-being and professional satisfaction while also benefitting comprehensive care in communities in numerous ways. That SEM certificate holders may prioritize professional interests over community healthcare needs was identified as a potential drawback. Athletes and physically active individuals have specific healthcare needs, and may constitute a significant critical mass to be considered a community unto themselves. CONCLUSIONS: The SEM certificates impact healthcare positively when holders work in collaborative models that are well aligned with local community needs. Expanding the awareness of the scope of SEM and advocacy for adequate remuneration for these services have the potential to enhance SEM contributions to comprehensive family medicine in Canada.

Evidence for clinical, genetic and biochemical variability in spinal muscular atrophy with progressive myoclonic epilepsy.

Spinal muscular atrophy with progressive myoclonic epilepsy (SMA-PME) is a recently delineated, autosomal recessive condition caused by rare mutations in the N-acylsphingosine amidohydrolase 1 (acid ceramidase) ASAH1 gene. It is characterized by motor neuron disease followed by progressive myoclonic seizures and eventual death due to respiratory insufficiency. Here we report an adolescent female who presented with atonic and absence seizures and myoclonic jerks and was later diagnosed as having myoclonic-absence seizures. An extensive genetic and metabolic work-up was unable to arrive at a molecular diagnosis. Whole exome sequencing (WES) identified two rare, deleterious mutations in the ASAH1 gene: c.850G>T;p.Gly284X and c.456A>C;p.Lys152Asn. These mutations were confirmed by Sanger sequencing in the patient and her parents. Functional studies in cultured fibroblasts showed that acid ceramidase was reduced in both overall amount and enzymatic activity. Ceramide level was doubled in the patient's fibroblasts as compared to control cells. The results of the WES and the functional studies prompted an electromyography (EMG) study that showed evidence of motor neuron disease despite only mild proximal muscle weakness. These findings expand the phenotypic spectrum of SMA-PME caused by novel mutations in ASAH1 and highlight the clinical utility of WES for rare, intractable forms of epilepsy.

Experiences of patient-centredness with specialized community-based care: a systematic review and qualitative meta-synthesis.

BACKGROUND: Specialized community-based care (SCBC) endeavours to help patients manage chronic diseases by formalizing the link between primary care providers and other community providers with specialized training. Many types of health care providers and community-based programs are employed in SCBC. Patient-centred care focuses on patients' psychosocial experience of health and illness to ensure that patients' care plans are modelled on their individual values, preferences, spirituality, and expressed needs. OBJECTIVES: To synthesize qualitative research on patient and provider experiences of SCBC interventions and health care delivery models, using the core principles of patient-centredness. DATA SOURCES: This report synthesizes 29 primary qualitative studies on the topic of SCBC interventions for patients with chronic conditions. Included studies were published between 2002 and 2012, and followed adult patients in North America, Europe, Australia, and New Zealand. REVIEW METHODS: Qualitative meta-synthesis was used to integrate findings across primary research studies. RESULTS: Three core themes emerged from the analysis: patients' health beliefs affect their participation in SCBC interventions;patients' experiences with community-based care differ from their experiences with hospital-based care;patients and providers value the role of nurses differently in community-based chronic disease care. LIMITATIONS: Qualitative research findings are not intended to generalize directly to populations, although meta-synthesis across several qualitative studies builds an increasingly robust understanding that is more likely to be transferable. The diversity of interventions that fall under SCBC and the cross-interventional focus of many of the studies mean that findings might not be generalizable to all forms of SCBC or its specific components. CONCLUSIONS: Patients with chronic diseases who participated in SCBC interventions reported greater satisfaction when SCBC helped them better understand their diagnosis, facilitated increased socialization, provided them with a role in managing their own care, and assisted them in overcoming psychological and social barriers. PLAIN LANGUAGE SUMMARY: More and more, to reduce bed shortages in hospitals, health care systems are providing programs called specialized community-based care (SCBC) to patients with chronic diseases. These SCBC programs allow patients with chronic diseases to be managed in the community by linking their family physicians with other community-based health care providers who have specialized training. This report looks at the experiences of patients and health care providers who take part in SCBC programs, focusing on psychological and social factors. This kind of lens is called patient-centred. Three themes came up in our analysis: patients' health beliefs affect how they take part in SCBC interventions; patients' experiences with care in the community differ from their experiences with care in the hospital; patients and providers value the role of nurses differently. The results of this analysis could help those who provide SCBC programs to better meet patients' needs.

Patient experiences of depression and anxiety with chronic disease: a systematic review and qualitative meta-synthesis.

BACKGROUND: Depression and anxiety are highly prevalent in patients with chronic disease, but remain undertreated despite significant negative consequences on patient health. A number of clinical groups have developed recommendations for depression screening practices in the chronic disease population. OBJECTIVES: The objective of this analysis was to review empirical qualitative research on the experiences of patients with chronic disease (e.g., COPD, diabetes, heart disease, stroke) and comorbid depression or anxiety, and to highlight the implications of the screening and management of anxiety and/or depression on chronic disease outcomes. REVIEW METHODS: We performed literature searches for studies published from January 2002 to May 2012. We applied a qualitative mega-filter to nine condition-specific search filters. Titles and abstracts were reviewed by two reviewers and, for the studies that met the eligibility criteria, full-text articles were obtained. Qualitative meta-synthesis was used to integrate findings across relevant published primary research studies. Qualitative meta-synthesis produced a synthesis of evidence that both retained the original meaning of the authors and offered a new, integrative interpretation of the phenomenon through a process of comparing and contrasting findings across studies. RESULTS: The findings of 20 primary qualitative studies were synthesized. Patients tended to experience their chronic conditions and anxiety or depression as either independent or inter-related (i.e., the chronic disease lead to depression/anxiety, the depression/anxiety lead to the chronic disease, or the two conditions exacerbated each other). Potential barriers to screening for depression or anxiety were also identified. LIMITATIONS: A wider array of issues might have been captured if the analysis had focused on broader psychological responses to the chronic disease experience. However, given the objective to highlight implications for screening for anxiety or depression, the more narrow focus seemed most relevant. CONCLUSIONS: Chronic disease and anxiety or depression can be independent or inter-related. Patients may be reluctant to acknowledge depression or anxiety as a separate condition, or may not recognize that the conditions are separate because of overlapping physical symptoms. More qualitative research is needed to specifically address screening for depression or anxiety. PLAIN LANGUAGE SUMMARY: Depression is a common complication of chronic disease. It may worsen the disease, and it may also affect the self-management of the disease. Screening for depression earlier, and then treating it, may reduce distress and improve symptoms of the chronic disease, leading to better quality of life.

How diet modification challenges are magnified in vulnerable or marginalized people with diabetes and heart disease: a systematic review and qualitative meta-synthesis.

BACKGROUND: Diet modification is an important part of self-management for patients with diabetes and/or heart disease (including coronary artery disease, heart failure, and atrial fibrillation). Many health care providers and community-based programs advise lifestyle and diet modification as part of care for people with these conditions. This report synthesizes qualitative information on how patients respond differently to the challenges of diet modification. Qualitative and descriptive evidence can illuminate challenges that may affect the success and equitable impact of dietary modification interventions. OBJECTIVES: To (a) examine the diet modification challenges faced by diabetes and/or heart disease patients; and (b) compare and contrast the challenges faced by patients who are members of vulnerable and nonvulnerable groups as they change their diet in response to clinical recommendations. DATA SOURCES: This report synthesizes 65 primary qualitative studies on the topic of dietary modification challenges encountered by patients with diabetes and/or heart disease. Included papers were published between 2002 and 2012 and studied adult patients in North America, Europe, and Australia/New Zealand. REVIEW METHODS: Qualitative meta-synthesis was used to integrate findings across primary research studies. RESULTS: Analysis identified 5 types of challenges that are common to both vulnerable and nonvulnerable patients: self-discipline, knowledge, coping with everyday stress, negotiating with family members, and managing the social significance of food. Vulnerable patients may experience additional barriers, many of which can magnify or exacerbate those common challenges. LIMITATIONS: While qualitative insights are robust and often enlightening for understanding experiences and planning services in other settings, they are not intended to be generalizable. The findings of the studies reviewed here--and of this synthesis--do not strictly generalize to the Ontario (or any specific) population. This evidence must be interpreted and applied carefully, in light of expertise and the experiences of the relevant community. CONCLUSIONS: Diet modification is not simply a matter of knowing what to eat and making the rational choice to change dietary practices. Rather, diet and eating practices should be considered as part of the situated lives of patients, requiring an individualized approach that is responsive to the conditions in which each patient is attempting to make a change. Common challenges include self-discipline, knowledge, coping with everyday stress, negotiating with family members, and managing the social significance of food. An individualized approach is particularly important when working with patients who have vulnerabilities. PLAIN LANGUAGE SUMMARY: Health care providers often encourage people with diabetes and/or heart disease to change their diet. They advise people with diabetes to eat less sugar, starch, and fat. They advise people with heart disease to eat less fat and salt. However, many patients find it difficult to change what they eat. This report examines the challenges people may face when making such changes. It also examines the special challenges faced by people who are vulnerable due to other factors, such as poverty, lack of education, and difficulty speaking English. Five themes were common to all people who make diet changes: self-discipline, knowledge, coping with stress, negotiating with family members, and managing the social aspect of food. Members of vulnerable groups also reported other challenges, such as affording fresh fruit and vegetables or understanding English instructions. This report may help health care providers work with patients more effectively to make diet changes.

Chronic disease patients' experiences with accessing health care in rural and remote areas: a systematic review and qualitative meta-synthesis.

BACKGROUND: Rurality can contribute to the vulnerability of people with chronic diseases. Qualitative research can identify a wide range of health care access issues faced by patients living in a remote or rural setting. OBJECTIVE: To systematically review and synthesize qualitative research on the advantages and disadvantages rural patients with chronic diseases face when accessing both rural and distant care. DATA SOURCES: This report synthesizes 12 primary qualitative studies on the topic of access to health care for rural patients with chronic disease. Included studies were published between 2002 and 2012 and followed adult patients in North America, Europe, Australia, and New Zealand. REVIEW METHODS: Qualitative meta-synthesis was used to integrate findings across primary research studies. RESULTS: Three major themes were identified: geography, availability of health care professionals, and rural culture. First, geographic distance from services poses access barriers, worsened by transportation problems or weather conditions. Community supports and rurally located services can help overcome these challenges. Second, the limited availability of health care professionals (coupled with low education or lack of peer support) increases the feeling of vulnerability. When care is available locally, patients appreciate long-term relationships with individual clinicians and care personalized by familiarity with the patient as a person. Finally, patients may feel culturally marginalized in the urban health care context, especially if health literacy is low. A culture of self-reliance and community belonging in rural areas may incline patients to do without distant care and may mitigate feelings of vulnerability. LIMITATIONS: Qualitative research findings are not intended to generalize directly to populations, although meta-synthesis across a number of qualitative studies builds an increasingly robust understanding that is more likely to be transferable. Selected studies focused on the vulnerability experiences of rural dwellers with chronic disease; findings emphasize the patient rather than the provider perspective. CONCLUSIONS: This study corroborates previous knowledge and concerns about access issues in rural and remote areas, such as geographical distance and shortage of health care professionals and services. Unhealthy behaviours and reduced willingness to seek care increase patients' vulnerability. Patients' perspectives also highlight rural culture's potential to either exacerbate or mitigate access issues. PLAIN LANGUAGE SUMMARY: People who live in a rural area may feel more vulnerable--that is, more easily harmed by their health problems or experiences with the health care system. Qualitative research looks at these experiences from the patient's point of view. We found 3 broad concerns in the studies we looked at. The first was geography: needing to travel long distances for health care can make care hard to reach, especially if transportation is difficult or the weather is bad. The second concern was availability of health professionals: rural areas often lack health care services. Patients may also feel powerless in "referral games" between rural and urban providers. People with low education or without others to help them may find navigating care more difficult. When rural services are available, patients like seeing clinicians who have known them for a long time, and like how familiar clinicians treat them as a whole person. The third concern was rural culture: patients may feel like outsiders in city hospitals or clinics. As well, in rural communities, people may share a feeling of self-reliance and community belonging. This may make them more eager to take care of themselves and each other, and less willing to seek distant care. Each of these factors can increase or decrease patient vulnerability, depending on how health services are provided.