Patient perspectives on primary care for multimorbidity: An integrative review

Abstract Introduction Improving healthcare for people with multiple chronic or ongoing conditions is receiving increased attention, particularly due to the growing number of people experiencing multimorbidity (MM) and concerns about the sustainability of the healthcare system. Primary care has been promoted as an important resource for supporting people with MM to live well with their conditions and to prevent unnecessary use of health care services. However, traditional primary care has been criticized for not centring the needs and preferences of people with MM themselves. Our aim was to conduct a review that centred on the perspective of people with MM in multiple ways, including having patient partners co‐lead the design, conduct and reporting of findings, and focusing on literature that reported the perspective of people with MM, irrespective of it being experimental or nonexperimental. Methods We searched for published literature in CINAHL with Full Text (EBSCOhost) and MEDLINE All (Ovid). Findings from experimental and nonexperimental studies were integrated into collaboration with patient partners. Results Twenty‐nine articles were included in the review. Findings are described in five categories: (1) Care that is tailored to my unique situation; (2) meaningful inclusion in the team; (3) a healthcare team that is ready and able to address my complex needs; (4) supportive relationships and (5) access when and where I need it. Conclusion This review supports a reorientation of primary care systems to better reflect the experiences and perspectives of people with MM. This can be accomplished by involving patient partners in the design and evaluation of primary care services and incentivizing collaboration among health and social supports and services for people with MM. Patient or Public Contribution Patient partners were involved in the design and conduct of this review, and in the preparation of the manuscript. Their involvement is further elucidated in the manuscript text.

medications, may be expected to make significant lifestyle changes, and may require regular self-monitoring of their health status at home. 12 Primary healthcare is ideally suited to support people with MM.
In principle, primary healthcare recognizes physical, mental and social well-being as contributing to a person's overall health and extends beyond disease-centred healthcare to a whole person approach; it also includes health promotion and illness prevention, along with treatment of disease and rehabilitation. 9 In practice, the term primary healthcare is used to identify a range of services aimed to support the health and well-being of communities and individuals, which includes services offered by doctors as well as community-based interventions to address issues, such as housing, infection control and maternal health. 14,15 This review focuses on primary care (PC)-one service that falls under the umbrella of primary healthcare-which is an approach to supporting individuals' health across the lifespan through connections with family doctors, nurse practitioners or other primary care providers (PCPs) who provide first contact and ongoing access to the healthcare system. Understood in the context of primary healthcare, PCP not only monitor health status and direct medical treatments but they also provide support for selfmanagement of medical conditions, advocate for changes to social determinants of health and recognize the context of a person's life in their experiences of health and illness.
Increasingly, healthcare leaders and researchers are engaging patients-a term used to describe those with personal experience seeking healthcare, and their family and friend caregivers 16 -in healthcare improvement. Incorporating the perspectives of patients in healthcare design helps make healthcare services more patientcentred, and ultimately, improve health and organizational outcomes. 16,17 Patient engagement in healthcare improvement is founded on the idea that patients see healthcare differently than those who have traditionally contributed to healthcare design, such as researchers, policymakers or practitioners.
There is a growing body of literature reporting the perspectives of patients on their PC experiences, and there have been several systematic reviews synthesizing aspects of this literature. For example, there have been reviews examining the perspectives of patients on coordination of PC and oncology care for people with MM, 18 the perspectives of older people with MM on integrated care, 19 and the healthcare preferences of older people with MM. 20 There has not been a review that synthesizes the literature reporting what is important to patients with MM about their PC. While systematic reviews have not traditionally included patient partners, there is growing recognition that having patients involved in literature reviews provide opportunities for interpreting the available literature that provides useful insights into healthcare systems that may otherwise be invisible. Therefore, our aim was to conduct a review of literature reporting on PC for people with MM that foregrounds patients' perspectives in the design, conduct, analysis and reporting of the review, as well as in the content. progressed to full-text screening were uploaded to Covidence and screened independently by two reviewers. Any disagreements at the title and abstract or full-text stages were resolved by discussion or by a third reviewer. Articles were included if they (1) focused on a population with two or more chronic or on-going health issues, (2) presented results from the perspective of people with MM and (3) discussed PC services or providers. Inclusion and exclusion can be found in Table 1. Once the final articles were selected, we reviewed the reference list of each to identify other relevant literature. No new sources were added at this stage.
Evaluating and comparing the quality of studies from diverse methodological traditions in the context of integrative reviews can be complex. 21 For a review such as this, which includes studies using various research methods, it is appropriate to evaluate methodological quality in a manner that is specific to the method used. We conducted quality appraisal using the Critical Appraisal Skills Programme Qualitative Research Checklist 23 for qualitative studies; the AXIS tool 24 for cross-sectional and observational studies and the JBI quality appraisal tool for cohort studies. 25 We included all studies that met the inclusion criteria regardless of methodological quality but used the quality appraisal to examine outlier cases in the findings. 21 This review was part of a larger study examining patient perspectives on team-based and patient-centred PC, which involved ongoing engagement of patient partners (Baxter and Peacock). Not only did the patient partners have lived experience of MM but they had also been involved in research and advocacy for issues related to Provides a patient perspective (i.e., primary source of data is patients). Written in languages other than English.
People with multimorbidity (or multiple chronic conditions, etc.) including two or more conditions, which may include mental or physical conditions, and may also include obesity or addiction.
Primary care (i.e., services or providers), the point of access to health care, including family doctors, nurse practitioners and family practice nurses.
Research articles (qualitative, quantitative or mixed methods) or theoretical papers.
Articles that focus on an intervention that is not the services or providers of primary care (e.g., perspectives on electronic medical records [EMRs]).
Data analysis progressed through five phases: data reduction, data display, data comparison, conclusion drawing, and verification. 21 For data reduction, we developed a classification system comprising focused questions that were developed from our study objectives and that we applied to each source (see Table 2 for sample questions). A table was designed to display the results of data reduction and was used to facilitate data comparison. We then used methods similar to thematic analysis to look for commonalities, contrasts and other relationships within the data table through an iterative process. 26 The result of the data comparison phase was a narrative of the findings. In the final verification process, both the narrative and data tables were reviewed by our patient partners to develop further analytical questions to apply to the original sources and expand interpretations. For example, they shared that from a patient perspective, the healthcare team included family members, PCP and medical specialists. They also identified the language to translate the research findings into concepts that reflect the lived experience of people with MM. Thus, the results are presented, as much as possible, with the patient perspective at the fore Table 3,

| Included articles
A total of 1624 sources were identified. Of these, 402 were duplicates.
The titles and abstracts of 1222 sources were screened and 1079 were not relevant. The full-text screening phase included 143 sources of which 115 were excluded. See Figure 1 for the PRISMA diagram. A total of 28 sources were included in the review. A summary of the included sources can be found in Table 3. Of the included studies, 11 were from the United States, 27 Germany, 51 Norway, 52 Spain 53 and the Netherlands. 54  Nine included studies used cross-sectional surveys to collect data, 27,29,30,35,39,49,51,53,54 one used an observational design 28 and one used retrospective cohort analysis. 31

| Main findings
In reviewing the literature reporting the perspectives of people with MM on PC experiences, we found five characteristics of PC that were particularly important to people with MM (see Table 4 for an overview of the findings 'Our intent was to explore patient perspectives on components of "best" processes of care for persons with multiple morbidities to inform the development of future interventions to improve care'.

USA
Observational study using survey and administrative data Veterans with at least two inpatient or outpatient encounters for diabetes and two encounters with cardiovascular and mental health comorbidities.
'To empirically test patient and disease characteristics that may influence patient-experienced coordinated care'.

Berntsen 2018 Norway
Semi-structured interviews Participants with a wide range of long-term health challenges including cancer.
'Explore how the PC-IC process ideal might be useful as a guide to capture iPP quality, and… operationalize… into a quality of care framework'.

Birke 2019 Denmark
Focus groups Patients from the clinic with two of the following conditions: diabetes, heart disease and lung disease.
Assess the feasibility of the model in practice for further RCT evaluation. Corser

USA
Semi-structured interviews and retrospective chart audits Participants had a diagnosis of two of the following: diabetes, chronic pulmonary disease, congestive heart failure, CAD, OA/musculoskeletal disorder and/or ongoing cancer.
Explore perceived needs of adults with MM regarding selfmanagement and relationships with PCP.

UK
Semi-structured interviews Participants were being managed for one of seven conditions: arthritis, CAD, stroke, hypercholesterolaemia, hypertension, diabetes mellitus or COPD. (1) Evaluation if patients' experiences are consistent with a common conceptual model, and (2) exploration of the potential influence, of condition or variations in the organization/delivery of care on patients' experiences. Ehman

USA
Cross-sectional survey Patients received surveys if they had an assigned PCP, were 18+, able to fill out the survey in English and were part of the clinic before team care.
Determine preference for continuity and access to care b/t healthy patients and those with MM.

Fortin 2010 Canada
Semi-structured interviews Patients with 5+ chronic conditions from one of the following clinics: FMG, CLSC and FMU.
Explore perceptions and expectations of patients with MM in regard to nurses' involvement in primary care practices. Gill

Canada
Semi-structured interviews 65 Years of age or older, diagnosed with two or more chronic conditions, had an informal caregiver who participated in the patient's healthcare, spoke English as a first language and was able to provide informed consent.
Understand health system experience to demonstrate where improvements are most needed to manage multimorbidity.

T A B L E 3 (Continued)
First Repeated cross-sectional telephone survey Adults who were covered by CareFirst insurance, whose primary care provider participated in the CareFirst PCMH programme, and had multiple chronic conditions.
'Examine the care experiences of patients with primary care providers in a payer-based PCMH programme at two points in time'.

UK
Ethnographic methods 65+, Two or more active long-term conditions.
'…to identify and describe threats to patients safety in primary care among older people with multimorbidity, to provide a better understanding of how these are experienced and to inform the development of interventions to reduce risks to patient safety'.
Examine perceptions of patients with obesity and chronic pain regarding PCP care management.

Kerrissey 2017 USA
Cross-sectional survey Older adults with two or more chronic conditions.
Report on the empirical relationship between integrated care domains (6) and medical group structural characteristics.

UK
Semi-structured interviews Participants with a diagnosis of CHD and/or diabetes.
Inform the development and implementation of future collaborative care models.

Kristensen 2018 Denmark
Semi-structured interviews Participants had diabetes and one or more other chronic condition and impaired self-care ability.
Investigate the experiences of disease and self-care ability, and the patient's view of the GP's role in self-care.

Krucien 2015 France
Discrete choice experiment OSAS and an additional chronic condition.

| Meaningful inclusion in the team
To tailor care to the person's situation, people with MM need to be meaningfully included in healthcare teams and respected for their expertize. This was often described in the literature as wanting to be heard and understood, along with being wellinformed. 33,34,37,47,49 Patients with MM wanted to have direct and consistent communication between themselves and their PCP. 31,36,41,43,44 Part of being valued as a member of the healthcare team was feeling like they were heard, and that providers actively listened to their concerns and responded appropriately. 33

| Supportive relationships
People with MM valued having relationships with care providers that were sustained over time and exemplify mutual respect. The relationships that were most valued were those that reflected a genuine concern, the memory of the person's situation and care needs and being responsive to the individual's concerns. 36,46,49,53 People with MM found it difficult when their providers forgot aspects of their care, such as medications or specific treatments. 34,49 The literature reporting on relationships between people with MM and PCP often draws on the concept of continuity, which is recognized as a particularly beneficial and desired aspect of PC. There are various theoretical descriptions of continuity, some of which further describe three types of continuity: relational, informational and managerial continuity. 55 Relational continuity generally reflects having the same provider over time. It was not a surprise, therefore, to find that many of the studies in this review reported that people with MM wanted to see the same providers over time. 30,38,41,42,46 Fortin et al. 42 found that patients with MM had higher expectations for continuity when nurses worked with physicians in PC practices; they expected to see the same nurse over time. A study by Ehman et al. 30 compared the perspectives of people with MM and those with single conditions on whether they preferred waiting to see their usual provider or being able to see a different provider more quickly. The results demonstrated that all patients, including those with MM, preferred quick access to any PCP for acute conditions rather than waiting to see their usual care provider. However, they also found that those with MM were willing to wait longer than those without MM to see their usual provider for chronic issues. This suggests that relationship continuity may be particularly important to people with MM.
Several studies found that patients with MM liked to have a 'point person', such as a care manager or care coordinator-someone they could reach out to with questions, who would have a sense of their history and current situation. 33,34,41,43,46 This has been referred to as managerial continuity. 55 Bayliss et al. 34 described the value of a care manager/coordinator to people with MM as someone who provided continuity, served as a liaison between healthcare team members and helped prioritize health issues. In a study by Kristensen et al., 46 people with MM viewed their PC physicians as health consultants, someone who understood their situation and could provide information to better manage their health conditions.
Matthias et al. 33 found that patients preferred having a nurse case manager as their primary contact rather than a family doctor. The authors suggested this was because the nurse case manager and patient developed a stronger and more beneficial relationship.

| Access when and where I need it
Central to patients' experiences of PC was the process of accessing  27,33,37,41,43,44 One recurring issue in the literature was having to wait for appointments; people with MM reported having to wait longer than they needed or wanted to see their PCP. 35,43,49,[51][52][53] The literature also noted people with MM experienced unacceptable delays in accessing other healthcare services that were coordinated by their PC teams, such as specialist services and consultations. 31,34,36,38,39,49 People with MM also experienced challenges when they had to spend a prolonged period waiting to see their PCP in the clinic waiting room. 53 For people with MM, it is often a challenge to discuss all of their issues in the timeframe of standard appointments. Across several studies, people with MM noted a preference for longer appointment times so they could address several concerns at a time, rather than make multiple appointments to address their concerns. 33

| Implications for healthcare design and delivery
In many ways, the findings from this review focused on the perspectives of people with MM and reflect a wider body of literature demonstrating the value of person-centred, comprehensive and integrated PC as the best way to support people with MM.
Case management is a mainstay of new models of PC for people with MM. 56 The importance of continuity in relation to PCP is well supported, particularly for caring for people with MM. 55