Objectives: This study explored the care challenges experienced by older patients with multimorbidity, their informal caregivers and family physicians. Approach: Semi-structured interviews were conducted with 27 patients, their informal caregivers and family physicians. Qualitative description was used to identify key themes in the interview transcripts. Results: Participants experienced many common challenges when managing multimorbidity, including a lack of decision-making support, poor communication and uncoordinated health services. Within these themes, unique perspectives specific to the role of being a patient, caregiver or family physician emerged. Conclusion: The study adds to a limited evidence base on the experience of patients with multimorbidity. By including the perspectives of their family caregivers and physicians, we provide important insight into the management of multimorbidity and recommend the uptake of specific strategies to address them. Résumé Objectif : Cette étude explore les défis vécus par les patients aînés en situation de multimorbidité, leurs aidants naturels et leurs médecins de famille. Démarche : Des entrevues semi-dirigées ont été menées auprès de 27 patients, de leurs aidants naturels et de leurs médecins de famille. Les principaux thèmes des transcriptions des entrevues ont été dégagés à l' aide d'une description qualitative. Résultats : Les participants éprouvent plusieurs défis communs dans la gestion de la multimorbidité, notamment un manque de soutien pour la prise de décision, de mauvaises communications et des services de santé non coordonnés. Parmi ces thèmes, il y a émergence de points de vue uniques propres aux rôles du patient, de l' aidant ou du médecin. Conclusion : L' étude s' ajoute au peu de données fondées sur l' expérience des patients en situation de multimorbidité. En incluant les points de vue des aidants naturels et des médecins, nous apportons des pistes importantes pour la gestion de la multimorbidité et nous recommandons l' adoption de stratégies particulières pour aborder la question.

BackgroundPeople 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.ObjectivesThis 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.MethodsA 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.ResultsSix 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.ConclusionsAlthough 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.

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.

Introduction: Health systems are striving to design and deliver care that is ‘person centred’—aligned with the needs and preferences of those receiving it; however, it is unclear what older people and their caregivers value in their care. This paper captures attributes of care that are important to older people and their caregivers. Methods: This qualitative descriptive study entailed 1–1 interviews with older adults with multimorbidity receiving community based primary health care in Canada and New Zealand and caregivers. Data were analyzed to identify core attributes of care, important to participants. Findings: Feeling heard, appreciated and comfortable; having someone to count on; easily accessing health and social care; knowing how to manage health and what to expect; feeling safe; and being independent were valued. Each attribute had several characteristics including: being treated like a friend; having contact information of a responsive provider; being accompanied to medical and social activities; being given clear treatment options including what to expect; having homes adapted to support limitations and having the opportunity to participate in meaningful hobbies. Conclusions: Attributes of good care extend beyond disease management. While our findings include activities that characterize these attributes, further research on implementation barriers and facilitators is required.

Aim: This qualitative study investigates how the Electronic Patient-Reported Outcome (ePRO) mobile application and portal system, designed to capture patient-reported measures to support self-management, affected primary care provider workflows. Background: The Canadian health system is facing an ageing population that is living with chronic disease. Disruptive innovations like mobile health technologies can help to support health system transformation needed to better meet the multifaceted needs of the complex care patient. However, there are challenges with implementing these technologies in primary care settings, in particular the effect on primary care provider workflows. Methods: Over a six-week period interdisciplinary primary care providers (n = 6) and their complex care patients (n = 12), used the ePRO mobile application and portal to collaboratively goal-set, manage care plans, and support self-management using patient-reported measures. Secondary thematic analysis of focus groups, training sessions, and issue tracker reports captured user experiences at a Toronto area Family Health Team from October 2014 to January 2015. Findings: Key issues raised by providers included: liability concerns associated with remote monitoring, increased documentation activities due to a lack of interoperability between the app and the electronic patient record, increased provider anxiety with regard to the potential for the app to disrupt and infringe upon appointment time, and increased demands for patient engagement. Primary care providers reported the app helped to focus care plans and to begin a collaborative conversation on goal-setting. However, throughout our investigation we found a high level of provider resistance evidenced by consistent attempts to shift the app towards fitting with existing workflows rather than adapting much of their behaviour. As health systems seek innovative and disruptive models to better serve this complex patient population, provider change resistance will need to be addressed. New models and technologies cannot be disruptive in an environment that is resisting change.

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  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

BackgroundThere is growing reliance on unpaid caregivers to provide support to people with care needs. Integrated care approaches that aim to coordinate primary care with community care known as community based primary health care (CBPHC) has been a key policy initiative across health systems; however most attention has been paid to the needs of patients and not caregivers. The objective of this paper was to explore the unmet needs of caregivers of older adults with complex care needs receiving CBPHC.MethodsThis qualitative descriptive study entailed one-to-one interviews with 80 caregivers from Canada and New Zealand where roles, experiences and needs were explored. Interview text related to unmet need was reviewed inductively and core themes identified.ResultsThree themes were identified across CBPHC sites: unrecognized role; lack of personal resources; and no breaks even when services are in place.ConclusionsTo support caregivers, models of care such as CBPHC need to look beyond the patient to meaningfully engage caregivers, address their needs and recognize the insight they hold. This knowledge needs to be valued as a key source of evidence to inform developments in health and social care.Electronic supplementary materialThe online version of this article (10.1186/s12877-018-0962-5) contains supplementary material, which is available to authorized users.

The terms symptom burden and symptom distress are frequently seen in palliative care literature yet are used in multiple ways ranging from addition of symptom scores to more in-depth assessments of interference in function. Patient input to date has had little role in these varied definitions yet previous reviews have suggested the importance of such input. This mixed qualitative and quantitative prospective study was conducted to seek patient input into the definition of 'symptom burden' and to correlate burden self-ranked scores with symptom scores on the Edmonton Symptom Assessment Scale (ESAS). Results suggest that patients with advanced disease followed by palliative care providers are a group with a high level of self-defined burden. Further, any patient rating one or more symptoms on the ESAS ≥7 is at high risk of self-defined burden and likely to be experiencing significant impact on physical, emotional and social functioning. Further work should look at which aspects of symptom management best promote a lessening of perceived burden.