"Where Do We Go from Here?" Health System Frustrations Expressed by Patients with Multimorbidity, Their Caregivers and Family Physicians

Abstract

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.

Multimorbidity in Older Patients with Cardiovascular Disease

“…Caregivers are often responsible for much of the day-today patient care, such as coordinating and providing transportation to clinician visits and ensuring adherence to medical recommendations. Frustrations voiced by caregivers of patients with multimorbidity include poor communication with the healthcare team, lack of coordination of care across multiple providers, and frustration with care recipients who refuse to adhere with medical recommendations [48]. In one study of caregivers of patients with heart failure, 37 % found communication with their care recipients challenging; the desire for more communication was linked with higher caregiver burden and stress [49].…”

Integrative review of the social determinants of health in older adults with multimorbidity

“…MM is typically defined in the literature as the coexistence of “multiple” or “two or more” chronic conditions or diseases (Bayliss et al., ; Boyd et al., ; Gill et al., ; Hochhalter, Song, Rush, Sklar, & Stevens, ; Vassilaki et al., ; Warner et al., ). Living with MM compared with having a single condition is associated with numerous negative outcomes for older adults: reduced life expectancy, avoidable hospitalizations; lower quality of life; poorer mood; frailty; increased risk of development of cognitive impairment; disability; functional decline; problems with medication use; and treatment conflicts (Bayliss et al., ; Ekdahl et al., ; Gilbert et al., ; Le Reste et al., ; Marengoni et al., ; Martin et al., ; Melis, Marengoni, Angleman, & Fratiglioni, ; Menotti et al., ; St John, Tyas, Menec, & Tate, ; Vassilaki et al., ; Woo & Leung, ).…”

Multimorbidity, frailty and chronic obstructive pulmonary disease

“…Patients and carers report poor communication with and between health care providers, a lack of care coordination, long wait times for services, difficulty making decisions about health care, being unsure how to prioritize, and feeling alone. 21 Family physicians described poor communication and lack of care coordination across services, concerns regarding the ability of patients to adhere to complex treatment regimens, difficulty quantifying the harms and benefits of guidelinedirected care, concerns regarding adverse events when following multiple guidelines, unrealistic expectations of patients and families and insufficient time or reimbursement to deal with the complexities of multimorbidity in everyday practice. 21,22 While important efforts are underway to make evidence-based care more accessible to people with multimorbidity, 23 current guidelines do not meet the challenges of multimorbidity and, as a result, pulmonary rehabilitation clinicians still face significant challenges.…”

“…21 Family physicians described poor communication and lack of care coordination across services, concerns regarding the ability of patients to adhere to complex treatment regimens, difficulty quantifying the harms and benefits of guidelinedirected care, concerns regarding adverse events when following multiple guidelines, unrealistic expectations of patients and families and insufficient time or reimbursement to deal with the complexities of multimorbidity in everyday practice. 21,22 While important efforts are underway to make evidence-based care more accessible to people with multimorbidity, 23 current guidelines do not meet the challenges of multimorbidity and, as a result, pulmonary rehabilitation clinicians still face significant challenges. A review of seven recent guidelines relevant to rehabilitation for people with chronic disease [24][25][26][27][28][29][30] reveals that three guidelines do not mention coexisting conditions, while another three guidelines make only passing mention of minor programme adaptations such as commencing exercise training at low workloads and progressing slowly or being as physically active as possible.…”