Ashlinder Gill

A qualitative descriptive study on the alignment of care goals between older persons with multi-morbidities, their family physicians and informal caregivers

BackgroundGoal setting is a recommended approach in clinical care that can help individuals with multi-morbidities and their caregivers manage chronic conditions. In this paper, the types of goals that were important for older persons with multi-morbidities were explored from the perspectives of patients, their caregivers and physicians. Comparisons of goals were made across each patient, caregiver and physician triad to determine alignment.MethodsThe study was a qualitative descriptive study facilitated through semi-structured one-on-one interviews. The study took place between May and October 2012 at a Family Health Team located in Ontario, Canada. The sample included 28 family medicine patients, their informal caregivers and family physicians. Socio-demographic data were analyzed via descriptive statistics in SPSS Version 17. Open ended questions pertaining to patient goals of care were analyzed thematically using NVivo9. Themes were derived on patient care goals for each of the participant groups (patients, caregivers and family physicians). Following this, alignment of goals across each of the triads was examined. Goal alignment was defined as concurrence on at least one goal by all three parties in a particular triad (i.e., patient, caregiver and family physician).ResultsJust over half of the patients were male (56%); they had an average age of 82.3 years and 4.61 health conditions. Most of the caregivers were female (82%); and 61% were a spouse of the care recipient. At the aggregate level, common goals expressed among patients, caregivers and family physicians were the maintenance of functional independence of patients and the management of their symptoms or functional challenges. Despite these common goals at the aggregate level, little alignment of goals was found when looking across patient-caregiver and physician triads. Lack of alignment tended to occur when patients had unstable or declining functional or cognitive health; when safety threats were noted; and when enhanced care services were required.ConclusionsThe data suggest that goal divergence tends to occur when patients are less medically stable. While goal divergence may be expected due to the different roles and responsibilities of each of the players involved, these perspectives should be illuminated when building care plans. Further research is required to observe the extent to which goal setting occurs in family practice as well as how it can be embedded as a standard of practice.

The Electronic Patient Reported Outcome Tool: Testing Usability and Feasibility of a Mobile App and Portal to Support Care for Patients With Complex Chronic Disease and Disability in Primary Care Settings

Background People experiencing complex chronic disease and disability (CCDD) face some of the greatest challenges of any patient population. Primary care providers find it difficult to manage multiple discordant conditions and symptoms and often complex social challenges experienced by these patients. The electronic Patient Reported Outcome (ePRO) tool is designed to overcome some of these challenges by supporting goal-oriented primary care delivery. Using the tool, patients and providers collaboratively develop health care goals on a portal linked to a mobile device to help patients and providers track progress between visits. Objectives This study tested the usability and feasibility of adopting the ePRO tool into a single interdisciplinary primary health care practice in Toronto, Canada. The Fit between Individuals, Fask, and Technology (FITT) framework was used to guide our assessment and explore whether the ePRO tool is: (1) feasible for adoption in interdisciplinary primary health care practices and (2) usable from both the patient and provider perspectives. This usability pilot is part of a broader user-centered design development strategy. Methods A 4-week pilot study was conducted in which patients and providers used the ePRO tool to develop health-related goals, which patients then monitored using a mobile device. Patients and providers collaboratively set goals using the system during an initial visit and had at least 1 follow-up visit at the end of the pilot to discuss progress. Focus groups and interviews were conducted with patients and providers to capture usability and feasibility measures. Data from the ePRO system were extracted to provide information regarding tool usage. Results Six providers and 11 patients participated in the study; 3 patients dropped out mainly owing to health issues. The remaining 8 patients completed 210 monitoring protocols, equal to over 1300 questions, with patients often answering questions daily. Providers and patients accessed the portal on an average of 10 and 1.5 times, respectively. Users found the system easy to use, some patients reporting that the tool helped in their ability to self-manage, catalyzed a sense of responsibility over their care, and improved patient-centered care delivery. Some providers found that the tool helped focus conversations on goal setting. However, the tool did not fit well with provider workflows, monitoring questions were not adequately tailored to individual patient needs, and daily reporting became tedious and time-consuming for patients. Conclusions Although our study suggests relatively low usability and feasibility of the ePRO tool, we are encouraged by the early impact on patient outcomes and generally positive responses from both user groups regarding the potential of the tool to improve care for patients with CCDD. As is consistent with our user-centered design development approach, we have modified the tool based on user feedback, and are now testing the redeveloped tool through an exploratory trial.

Room for improvement? A quality of life assessment in patients with malignant bowel obstruction.

This prospective study followed 35 patients admitted to hospital with malignant bowel obstruction (MBO) to evaluate quality of life (QOL). Subjects completed the Edmonton Symptom Assessment Scale (ESAS) and Rotterdam Symptom Checklist (RSCL) at recruitment, and at one week, one month and three months. The highest ranked ESAS scores at recruitment (which was generally 18-36 hours post admission to hospital) included loss of appetite (median=7.5), fatigue (6.5) and overall well-being (6.0). The total ESAS score improved by 7.5, 11.5 and 11.0 points respectively at one week, one month and three months (p<0.05, p<0.01, NS). RSCL median scores for physical and psychological subscales were high at baseline (36.2, 42.9) and improved significantly at one week and one month (p<0.05). Psychological functioning appeared to be worsening by three months and at no time did activity level improve significantly. The overall QOL score was extremely poor at baseline (6.0 median) improving to 3.3 at one month (median fall=1.0, p<0.05) and 3.4 at three months. Further work should address the lack of improvement in activity and apparent deterioration in psychological functioning after one month.

Enhancing communication in end-of-life care: a clinical tool translating between the Clinical Frailty Scale and the Palliative Performance Scale.

To create a clinical tool to translate between the Clinical Frailty Scale (CFS), which geriatrics teams use, and Palliative Performance Scale (PPS), which palliative care teams use, to create a common language and help improve communication between geriatric and palliative care teams.

Perceived value of support for older adults coping with multi-morbidity: patient, informal care-giver and family physician perspectives

ABSTRACT This study investigated the perceived value of informal and formal supports for older adults with multi-morbidity from the perspectives of patients, care-givers and family physicians. Semi-structured interviews were conducted with 27 patients, their informal care-givers and their family physicians in an urban academic family health team in Ontario. Analysis was conducted using a General Inductive Approach to facilitate identification of main themes and build a framework of perceived value of supports. Participant views converged on supports that facilitate patient independence and ease care-giver burden. However, important differences in participant perceptions arose regarding these priorities. Physicians and care-givers valued supports that facilitate health and safety while patients prioritised supports that enable self-efficacy and independence. While formal supports which eased care-giver burden were viewed positively by all members of the triad, many patients also rejected formal supports, citing that informal support from their care-giver was available. Such conflicts between patient, care-giver and physician-perceived value of supports may have important implications for consumer and care-giver willingness to accept formal supports when supports are available. These findings contribute to the broader literature on community-based care by incorporating the perspectives of patients, informal care-givers and family physicians to understand better the barriers and facilitators of uptake of supportive services that contribute to successful ageing at home.

A Patient-Centered Transitions Framework for Persons With Complex Chronic Conditions.

Hospitals are under increasing pressures by governing bodies to meet mandated performance standards and fiscal targets. As a result, hospitals are incentivized by funders to discharge patients efficiently and effectively. Gaining insight into the patient experience of discharge, as well as understanding patient needs and concerns, is prudent. Leveraging this knowledge may expedite patient discharge and potentially minimize hospital readmission rates. The purpose of this study was to better understand the discharge experiences and concerns of patients with multiple chronic diseases—a population currently understudied. In this study, qualitative survey data were analyzed from a large scale, mixed methods study that took place in 2011 at Bridgepoint Hospital, a complex continuing care and rehabilitation facility in Toronto, Canada. One hundred and sixteen patients were interviewed individually using a self-designed survey composed of open- and close-ended questions. All data pertaining to hospital discharge were extracted and examined using qualitative descriptive analysis. Key discharge concerns were related to process (next steps in the care plan, friction in the provider–patient relationship, premature discharge), consequences (relocation, impact on family, leaving the comforts and security of the hospital), and needs (availability of home care, managing daily activities, navigating the predisability home). Our findings are presented in a patient-centered framework that can be used as a guide for future discharge strategies for complex patient populations.

mHealth Tools for the Self-Management of Patients With Multimorbidity in Primary Care Settings: Pilot Study to Explore User Experience

Background Given the complex and evolving needs of individuals with multimorbidity, the adoption of mHealth tools to support self-management efforts is increasingly being explored, particularly in primary care settings. The electronic patient-reported outcomes (ePRO) tool was codeveloped with patients and providers in an interdisciplinary primary care team in Toronto, Canada, to help facilitate self-management in community-dwelling adults with multiple chronic conditions. Objective The objective of study is to explore the experience and expectations of patients with multimorbidity and their providers around the use of the ePRO tool in supporting self-management efforts. Methods We conducted a 4-week pilot study of the ePRO tool. Patients’ and providers’ experiences and expectations were explored through focus groups that were conducted at the end of the study. In addition, thematic analyses were used to assess the shared and contrasting perspectives of patients and providers on the role of the ePRO tool in facilitating self-management. Coded data were then mapped onto the Individual and Family Self-Management Theory using the framework method. Results In this pilot study, 12 patients and 6 providers participated. Both patients and providers emphasized the need for a more explicit recognition of self-management context, including greater customizability of content to better adapt to the complexity and fluidity of self-management in this particular patient population. Patients and providers highlighted gaps in the extent to which the tool enables self-management processes, including how limited progress toward self-management goals and the absence of direct provider engagement through the ePRO tool inhibited patients from meeting their self-management goals. Providers highlighted proximal outcomes based on their experience of the tool and specifically, they indicated that the tool offered valuable insights into the broader patient context, which helps to inform the self-management approach and activities they recommend to patients, whereas patients recognized the tool’s potential in helping to improve access to different providers in a team-based primary care setting. Conclusions This study identifies a more explicit recognition of the contextual factors that influence patients’ ability to self-manage and greater adaptability to accommodate patient complexity and provider workflow as next steps in refining the ePRO tool to better support self-management efforts in primary care ahead of its application in a full-scale randomized pragmatic trial.

How does it feel to be a problem? Patients’ experiences of self-management support in New Zealand and Canada

The impact of long‐term conditions is the “healthcare equivalent to climate change.” People with long‐term conditions often feel they are a problem, a burden to themselves, their family and friends. Providers struggle to support patients to self‐manage. The Practical Reviews in Self‐Management Support (PRISMS) taxonomy lists what provider actions might support patient self‐management.