Decision-making and related outcomes of patients with complex care needs in primary care settings: a systematic literature review with a case-based qualitative synthesis.

BACKGROUND: In primary care, patients increasingly face difficult decisions related to complex care needs (multimorbidity, polypharmacy, mental health issues, social vulnerability and structural barriers). There is a need for a pragmatic conceptual model to understand decisional needs among patients with complex care needs and outcomes related to decision. We aimed to identify types of decisional needs among patients with complex care needs, and decision-making configurations of conditions associated with decision outcomes. METHODS: We conducted a systematic mixed studies review. Two specialized librarians searched five bibliographic databases (Medline, Embase, PsycINFO, CINAHL and SSCI). The search strategy was conducted from inception to December 2017. A team of twenty crowd-reviewers selected empirical studies on: (1) patients with complex care needs; (2) decisional needs; (3) primary care. Two reviewers appraised the quality of included studies using the Mixed Methods Appraisal Tool. We conducted a 2-phase case-based qualitative synthesis framed by the Ottawa Decision Support Framework and Gregor's explicative-predictive theory type. A decisional need case involved: (a) a decision (what), (b) concerning a patient with complex care needs with bio-psycho-social characteristics (who), (c) made independently or in partnership (how), (d) in a specific place and time (where/when), (e) with communication and coordination barriers or facilitators (why), and that (f) influenced actions taken, health or well-being, or decision quality (outcomes). RESULTS: We included 47 studies. Data sufficiency qualitative criterion was reached. We identified 69 cases (2997 participants across 13 countries) grouped into five types of decisional needs: 'prioritization' (n = 26), 'use of services' (n = 22), 'prescription' (n = 12), 'behavior change' (n = 4) and 'institutionalization' (n = 5). Many decisions were made between clinical encounters in situations of social vulnerability. Patterns of conditions associated with decision outcomes revealed four decision-making configurations: 'well-managed' (n = 13), 'asymmetric encounters' (n = 21), 'self-management by default' (n = 8), and 'chaotic' (n = 27). Shared decision-making was associated with positive outcomes. Negative outcomes were associated with independent decision-making. CONCLUSION: Our results could extend decision-making models in primary care settings and inform subsequent user-centered design of decision support tools for heterogenous patients with complex care needs.

High Users of Healthcare Services: Development and Alpha Testing of a Patient Decision Aid for Case Management.

BACKGROUND: Some patients with complex healthcare needs become high users of healthcare services. Case management allows these patients and their interprofessional team to work together to evaluate their needs, priorities and available resources. High-user patients must make an informed decision when choosing whether to engage in case management and currently there is no tool to support them. OBJECTIVE: The objective of this study was to develop and conduct a pilot alpha testing of a patient decision aid that supports high-user patients with complex needs and the teams who guide those patients in shared decision making when engaging in case management. METHODS: We chose a user-centered design to co-develop a patient decision aid with stakeholders informed by the Ottawa Research Institute and International Patient Decision Aid Standards frameworks. Perceptions and preferences for the patient decision aid's content and format were assessed with patients and clinicians and were iteratively collected through interviews and focus groups. We developed a prototype and assessed its acceptability by using a think-aloud method and a questionnaire with three patient-partners, six clinicians and seven high-user patients with complex needs. RESULTS: The three rounds of evaluation to assess the decision aid's acceptability highlighted comments related to simplicity, readability and visual aspect. A section presenting clinical vignettes including story telling was identified as the most helpful. CONCLUSIONS: We created and evaluated a patient decision aid. Considering the positive comments, we believe that this aid has the potential to help high-user patients with complex care needs make better choices concerning case management.

Some patients are living with physical and mental health problems. They also may have handicaps and unsuitable backgrounds. This may lead them to use health services more often. Case management is a service offered by a team of health professionals. They help patients to decide what is important to them based on their values and preferences. Currently, no tools exist for that service. We built and assessed a tool to support patients in their decisions. With this tool, they think about engaging in case management or continuing with usual care. They can also postpone their decision to a later time. This tool will present data based on scientific studies about case management. It will help patients to clarify their values and preferences to make the best decision for them. This tool was built with a team of researchers, healthcare professionals, managers and patient-partners. It was built according to several guidelines. We met participants and they answered questions that helped us to build our tool. We also ensured the tool was acceptable to them. The most frequent comments were to make it simpler and to use simple vocabulary. The look was also important for the participants. The latter found that the section where patients could write their own story was useful. Patients also found that reading stories about other patients like them was helpful. Our tool will help patients with complex care needs make better choices concerning their health based on their values and scientific data.

Perspectives of Quebec Primary Health Care Nurse Practitioners on Their Role and Challenges in Chronic Disease Management: A Qualitative Study.

BACKGROUND: Primary health care nurse practitioners (PHCNPs) can play a key role in chronic disease management. However, little is known about the challenges they face. PURPOSE: The study aimed to describe PHCNPs' perspectives on their role for patients with chronic health conditions, the barriers they face, and facilitating factors. METHODS: A qualitative descriptive exploratory study was conducted with 24 PHCNPs in the Canadian province of Quebec. RESULTS: PHCNPs believe that they are in an optimal position to address the needs of patients with chronic health conditions, especially in providing self-management support. However, PHCNPs reported feeling pressured to practice according to a biomedical model and to constantly defend their role in chronic disease management. They feel that they are frequently being diverted from their role to compensate for the lack of family doctors. PHCNPs made concrete recommendations to optimize their autonomous practice and quality of care: promoting strong interprofessional communication skills, genuine mentoring relationships between PHCNPs and partner physicians, managers upholding the full scope of PHCNPs' practice, and a more flexible legislative framework. CONCLUSIONS: The original conception of PHCNPs as health professionals with unique characteristics is at stake. The factors that should be targeted to support the autonomy of PHCNPs were identified.

Decisional needs assessment of patients with complex care needs in primary care.

RATIONALE: Patients with complex care needs who frequently use health services often face challenges in managing their health and with integrated care, leading to frequent decision making. These complex care needs require a good understanding of health issues and their impact on daily life. As the decisional needs of this particular clientele have yet to be described in scientific literature, they warrant further study. OBJECTIVES: To assess the decision-making needs of patients with complex care needs (PCCN) who frequently use health care services. METHODS: We performed a multicenter cross-sectional qualitative descriptive study in four institutions of the health and social services network of Quebec (Canada). We enrolled a convenience sample of PCCNs who frequently use health care services, health care providers, case managers, and decision-makers. We conducted interviews and focus groups and investigated decisional needs according to the Ottawa decision support framework: roles played and desired in the decision-making process, facilitators, and barriers. We conducted qualitative data collection and qualitative deductive/inductive thematic analysis within and across participating groups. RESULTS: In total, 16 patients, 38 clinicians, six case managers, and 14 decision-makers participated in the study. The decisional needs of this clientele are numerous, varied and different from those of the general population. We identified 26 decisional needs grouped under five themes. The most frequent decisions related to visiting the emergency department, moving to a nursing home, and adhering to a plan or treatment. In addition, we identified new themes such as patients' fear and mistrust of health professionals, differences of opinion between health professionals and health professionals' preconceived opinions of patients. CONCLUSION: We observed a wide range of types of decisions that patients face and differences in decision-making needs across participating groups. Our results should inform future research on the development of a patient decision aid tool.

Health outcomes of online consumer health information: A systematic mixed studies review with framework synthesis.

The Internet has become the first source of consumer health information. Most theoretical and empirical studies are centered on information needs and seeking, rather than on information outcomes. This review's purpose is to explore and explain health outcomes of Online Consumer Health Information (OCHI) in primary care. A participatory systematic mixed studies review with a framework synthesis was undertaken. Starting from an initial conceptual framework, our specific objectives were to (a) identify types of OCHI outcomes in primary care, (b) identify factors associated with these outcomes, and (c) integrate these factors and outcomes into a comprehensive revised framework combining an information theory and a psychosocial theory of behavior. The results of 65 included studies were synthesized using a qualitative thematic data analysis. The themes derived from the literature underwent a harmonization process that produced a comprehensive typology of OCHI outcomes. The revised conceptual framework specifies four individual and one organizational level of OCHI outcomes, while including factors such as consumers' information needs and four interdependent contextual factors. It contributes to theoretical knowledge about OCHI health outcomes, and informs future research, information assessment methods, and tools to help consumers find and use health information.

Challenges faced by Canadian primary health care nurse practitioners in chronic disease management: A qualitative study among key informants.

BACKGROUND AND PURPOSE: The increasing prevalence of chronic diseases is driving health care systems to rethink their operations. Despite numerous studies supporting the advantages of primary health care nurse practitioners (PHCNPs) in chronic disease management, implementing practices that fully use the skills of these practitioners seems impeded in the Canadian province of Québec. This study explores the views of leaders involved in primary health care regarding the contributions PHCNPs can make in chronic disease management and the challenges they face in doing so. METHODS: Through semistructured interviews, an exploratory descriptive qualitative study was conducted with 20 key informants across Québec who hold a variety of professional positions connected to PHCNPs. CONCLUSIONS: Primary health care nurse practitioners were perceived to be able to improve self-management support for chronic diseases. In reality, however, PHCNPs are mainly devoting their time to clientele in acute care, and current regulations governing their practices limit their involvement in chronic disease management. IMPLICATIONS FOR PRACTICE: Integrating PHCNPs offers a unique opportunity for health care settings to redefine the roles of family physicians and registered nurses and to restructure practices toward a chronic disease-oriented system. A clinical manager should be designated to monitor this restructuring process and ensure its success.

Assessing and Improving the Use of Online Information About Child Development, Education, Health, and Well-Being in Low-Education, Low-Income Parents: Protocol for a Mixed-Methods Multiphase Study.

BACKGROUND: This study is born from a partnership between Web editors of Naître et grandir (N&G) and AboutKidsHealth (AKH) and researchers who developed and validated the Information Assessment Method (IAM). N&G and AKH are popular Canadian websites with high-quality comprehensive information about child development, education, health, and well-being. IAM allows parents to assess online information and provide feedback to Web editors. High-quality online consumer health information improves knowledge, self-efficacy, and health. However, low-socioeconomic status (SES) parents underuse N&G and IAM, despite these parents being more likely to report decreased worries and increased confidence as outcomes from N&G information. OBJECTIVE: The study is aimed to improve low-SES parents' use of online child information and interaction with Web editors and explore subsequent health outcomes for parents and children. METHODS: Multiphase mixed-methods design. Our general approach is centered on organizational participatory research. In phase 1, we will conduct a qualitative interpretive study to identify barriers and facilitators to using N&G information and to interacting with N&G editors via IAM; interview more than 10 low-SES parents about their experience with N&G and IAM and more than 10 nonusers of N&G and IAM; and use thematic analysis to identify main barriers and facilitators. In phase 2, we will integrate parents' views (phase 1 findings) in N&G and IAM and implement a new version: IAM+N&G+. In phase 3, we will conduct a quantitative prospective longitudinal study (pre-/postimplementation monitoring of knowledge use and outcomes). We will compare the use of original (IAM and N&G) and new (IAM+ and N&G+) versions using Google Analytics variables, IAM variables, a material and social deprivation index, and demographics. We anticipate increased use post implementation (linear mixed modeling). In phase 4, we will conduct a qualitative descriptive study on outcomes of information use. We will interview more than 30 low-SES parents who receive and rate the N&G+ newsletter using IAM+ and analyze data in the form of life histories to describe how parents and children experience perceived outcomes. RESULTS: The project was funded in 2017 by the Canadian Institutes of Health Research and received an ethics approval by the McGill University's institutional review board. Data collection for phase 1 was completed in 2018. Phases 2 to 4 will be conducted until 2020. Findings from this study will also be used to develop a free toolkit, useful to all Web editors, with recommendations for improving health information for low-SES persons and interactions with them using IAM. CONCLUSIONS: The results of this study will provide a deep understanding of how low-SES parents use online child information and interact with Web editors. Following the implementation of IAM+N&G+, results will also elucidate subsequent health outcomes for low-SES parents and children after interaction with Web editors has been optimized. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/9996.

Decisional needs assessment of patients with complex care needs in primary care: a participatory systematic mixed studies review protocol.

INTRODUCTION: Patients with complex care needs (PCCNs) often suffer from combinations of multiple chronic conditions, mental health problems, drug interactions and social vulnerability, which can lead to healthcare services overuse, underuse or misuse. Typically, PCCNs face interactional issues and unmet decisional needs regarding possible options in a cascade of interrelated decisions involving different stakeholders (themselves, their families, their caregivers, their healthcare practitioners). Gaps in knowledge, values clarification and social support in situations where options need to be deliberated hamper effective decision support interventions. This review aims to (1) assess decisional needs of PCCNs from the perspective of stakeholders, (2) build a taxonomy of these decisional needs and (3) prioritise decisional needs with knowledge users (clinicians, patients and managers). METHODS AND ANALYSIS: This review will be based on the interprofessional shared decision making (IP-SDM) model and the Ottawa Decision Support Framework. Applying a participatory research approach, we will identify potentially relevant studies through a comprehensive literature search; select relevant ones using eligibility criteria inspired from our previous scoping review on PCCNs; appraise quality using the Mixed Methods Appraisal Tool; conduct a three-step synthesis (sequential exploratory mixed methods design) to build taxonomy of key decisional needs; and integrate these results with those of a parallel PCCNs' qualitative decisional need assessment (semistructured interviews and focus group with stakeholders). ETHICS AND DISSEMINATION: This systematic review, together with the qualitative study (approved by the Centre Intégré Universitaire de Santé et Service Sociaux du Saguenay-Lac-Saint-Jean ethical committee), will produce a working taxonomy of key decisional needs (ontological contribution), to inform the subsequent user-centred design of a support tool for addressing PCCNs' decisional needs (practical contribution). We will adapt the IP-SDM model, normally dealing with a single decision, for PCCNs who experience cascade of decisions involving different stakeholders (theoretical contribution). Knowledge users will facilitate dissemination of the results in the Canadian primary care network. PROSPERO REGISTRATION NUMBER: CRD42015020558.

Convergent and sequential synthesis designs: implications for conducting and reporting systematic reviews of qualitative and quantitative evidence.

BACKGROUND: Systematic reviews of qualitative and quantitative evidence can provide a rich understanding of complex phenomena. This type of review is increasingly popular, has been used to provide a landscape of existing knowledge, and addresses the types of questions not usually covered in reviews relying solely on either quantitative or qualitative evidence. Although several typologies of synthesis designs have been developed, none have been tested on a large sample of reviews. The aim of this review of reviews was to identify and develop a typology of synthesis designs and methods that have been used and to propose strategies for synthesizing qualitative and quantitative evidence. METHODS: A review of systematic reviews combining qualitative and quantitative evidence was performed. Six databases were searched from inception to December 2014. Reviews were included if they were systematic reviews combining qualitative and quantitative evidence. The included reviews were analyzed according to three concepts of synthesis processes: (a) synthesis methods, (b) sequence of data synthesis, and (c) integration of data and synthesis results. RESULTS: A total of 459 reviews were included. The analysis of this literature highlighted a lack of transparency in reporting how evidence was synthesized and a lack of consistency in the terminology used. Two main types of synthesis designs were identified: convergent and sequential synthesis designs. Within the convergent synthesis design, three subtypes were found: (a) data-based convergent synthesis design, where qualitative and quantitative evidence is analyzed together using the same synthesis method, (b) results-based convergent synthesis design, where qualitative and quantitative evidence is analyzed separately using different synthesis methods and results of both syntheses are integrated during a final synthesis, and (c) parallel-results convergent synthesis design consisting of independent syntheses of qualitative and quantitative evidence and an interpretation of the results in the discussion. CONCLUSIONS: Performing systematic reviews of qualitative and quantitative evidence is challenging because of the multiple synthesis options. The findings provide guidance on how to combine qualitative and quantitative evidence. Also, recommendations are made to improve the conducting and reporting of this type of review.

Perspective of community pharmacists on their practice with patients who have an antidepressant drug treatment: findings from a focus group study.

BACKGROUND: Around 2/3 of patients with major depression discontinue their antidepressant drug treatment (ADT) prematurely. Community pharmacists can rely on their regular contacts with patients to identify and support those experiencing difficulties with their ADT. OBJECTIVE: The aim of this study is to describe pharmacists' perceptions with respect to their practices related to patients having an ADT. METHODS: A qualitative study was conducted based on 6 focus groups involving 43 community pharmacists in 5 regions of Quebec province, Canada. Verbatim transcripts of focus groups were analyzed using computer-assisted thematic analysis. RESULTS: The discussions revealed three major aspects of the participants' pharmacy practice: convincing patients to initiate ADT, dealing with side effects in the first weeks of the treatment, and taking a reactive approach to managing the treatment for the remainder of the follow-up. Discussions also enabled participants to identify the challenges they face concerning their practice with patients who have an ADT, and voice their recommendations for improving pharmacy practice and ultimately patient adherence to ADT. CONCLUSIONS: Pharmacists wishing to help their patients to adequately manage their ADT face important barriers. Potential solutions include tools designed to help pharmacists better detect and intervene in ADT-related problems. Study findings will guide the on-going development of training and tools to support pharmacists' practice in this context.

[ETHNOMEDICAL ETHICS WITH REGARD TO PATIENT PLURIVOCALITY: BETWEEN AUTONOMY AND HETERONOMY]. / UNE ÉTHIQUE ETHNOMÉDICALE CONSIDÉRANT LA PLURIVOCALITÉ DU PATIENT: ENTRE AUTONOMIE ET HÉTÉRONOMIE.

BACKGROUND: In a contemporary multicultural context that stimulates new dynamics within the plural health systems, the universality of the patient autonomy principle is questioned. Wishing to contribute to the discussion on the topic, this article presents a reflection drawn from a case study in an integrative health care (IHC) clinic. This type of organization, polarizing a variety of care traditions, is an exceptional social laboratory for the analysis of the convergence of values and ethical principles, marked by various cultural foundations. METHODOLOGY: The combination of different data collection methods (semi-structured interviews, participant observation during interprofessional meetings, recorded clinical meetings) permitted the detailed analysis of patients' therapeutic itineraries in a Quebec IHC clinic that grouped practitioners of biomedical, alternative and traditional approaches. The interpretive conceptual framework illustrates the occasionally contradictory intersection of different cultural foundations influencing patient and practitioner explanatory models (EM) and semantic networks (SN). RESULTS: Data analysis highlights a dissonance between a liberal and Cartesian conception of the individual, responsible for the management of his or her health, and some Taoist premises of traditional Chinese medicine (TCM), prioritizing the benefit of the person to his or her self-determination. The monitoring of therapeutic patient itineraries emphasized a phenomenon of EM plurivocality, proposing that individuals can use different voices and embody different characters, autonomous or heteronomous, depending on the context in which they describe their illness. The exploration of the heterogeneity of patients' SNs illustrates that it is possible for the same person to both need to be taken by the hand and desire autonomy. CONCLUSION: Stressing the influence of certain cultural foundations on differential prioritization of patient autonomy principle, this article offers a reflection on the development of narrative ethnomedical ethics respecting the idiosyncrasies and plurivocality of the person.

Practitioners' validation of framework of team-oriented practice models in integrative health care: a mixed methods study.

BACKGROUND: Biomedical and Complementary and Alternative Medicine (CAM) academic and clinical communities have yet to arrive at a common understanding of what Integrative healthcare (IHC) is and how it is practiced. The Models of Team Health Care Practice (MTHP) framework is a conceptual representation of seven possible practice models of health care within which teams of practitioners could elect to practice IHC, from an organizational perspective. The models range from parallel practice at one end to integrative practice at the other end. Models differ theoretically, based on a series of hypotheses. To date, this framework has not been empirically validated. This paper aims to test nine hypotheses in an attempt to validate the MTHP framework. METHODS: Secondary analysis of two studies carried out by the same research team was conducted, using a mixed methods approach. Data were collected from both biomedical and CAM practitioners working in Canadian IHC clinics. The secondary analysis is based on 21 participants in the qualitative study and 87 in the quantitative study. RESULTS: We identified three groups among the initial seven models in the MTHP framework. Differences between practitioners working in different practice models were found chiefly between those who thought that their clinics represented an integrative model, versus those who perceived their clinics to represent a parallel or consultative model. Of the scales used in the analysis, only the process of information sharing varied significantly across all three groups of models. CONCLUSIONS: The MTHP framework should be used with caution to guide the evaluation of the impact of team-oriented practice models on both subjective and objective outcomes of IHC. Groups of models may be more useful, because clinics may not "fit" under a single model when more than one model of collaboration occurs at a single site. The addition of a hypothesis regarding power relationships between practitioners should be considered. Further validation is required so that integrative practice models are well described with appropriate terminology, thus facilitating the work of health care practitioners, managers, policy makers and researchers.

Interprofessional collaboration within Canadian integrative healthcare clinics: Key components.

Research shows that interprofessional collaboration has become an important factor in the implementation of effective healthcare models. To date, the literature has not focused on the collaboration between medical doctors and complementary and alternative medicine (CAM) healthcare practitioners, an example of interdisciplinary collaboration called integrative healthcare (IHC). Drawing on in-depth, semi-standardized interviews conducted with 21 practitioners working in Canadian IHC clinics, this paper explored and interpreted how IHC is experienced by those working in Canadian IHC clinics. The interview questions and analysis were guided by the Input, Process, Output conceptual framework drawn from the organizational management theory (McGrath, J. E. (1964). Social psychology: A brief introduction. New York: Holt, Rinehart and Winston.) to study collaboration within teams. We found that constructs contributing to collaboration included practitioners' attitudes and educational background, as well as external factors such as the healthcare system and financial pressures. Major processes affecting collaboration included communication, patient referral and power relationships. These determinants of collaboration were found to result in learning opportunities for practitioners, modified burden of work and ultimately, higher affective commitment toward the clinic. These constructs serve as a guide for further investigation of interprofessional collaboration within an IHC clinic. This exploration of interprofessional collaboration in IHC identified a broad array of key factors associated with interprofessional collaboration. These factors are critical to better understand the functioning of IHC clinics, and provide guidance for creation or maintenance of successful clinics.

Autotransplantation in mdx mice of mdx myoblasts genetically corrected by an HSV-1 amplicon vector.

Duchenne muscular dystrophy (DMD) is an X-linked recessive disorder, characterized by a lack of dystrophin. To eliminate the need for immunosuppressive drugs, transplantation of genetically modified autologous myoblasts has been proposed as a possible therapy for this myopathy. An HSV-1 amplicon vector (HSVDGN), containing a 17.3-kb full-length MCK-driven mouse dystrophin cDNA, an eGFP gene, and a neomycin resistance gene driven by CMV or SV40 promoters, respectively, was constructed and used to transduce mdx primary myoblasts. The presence of the eGFP and neomycin resistance genes facilitated the evaluation of the initial transduction efficiency and the permanent transduction frequency. At low multiplicities of infection (MOI 1-5), the majority of myoblasts (60-90%) expressed GFP. The GFP-positive mdx myoblasts were sorted by FACS and selected with neomycin (300 microg/ml) for 2 weeks. Up to 2% of initially infected mdx myoblasts stably expressed the three transgenes without further selection at that time. These altered cells were grafted into the tibialis anterior muscles of 18 mdx mice. Some of the mice were immunosuppressed with FK506 due to the anticipation that eGFP and the product of neomycin resistance gene might be immunogenic. One month after transplantation, numerous muscle fibers expressing mouse dystrophin were detected by immunohistochemistry, in both immunosuppressed (10-50%) and nonimmunosuppressed (5-25%) mdx mice. Our results demonstrated the capability of permanently expressing a full-length dystrophin in dystrophic myoblasts with HSV-1 amplicon vector and raised the possibility of an eventual treatment of DMD based on the transplantation of genetically modified autologous myoblasts.