Perception of patient-centred care and its relationship with management outcomes and complications among patients with DM in Malawi

Introduction

Patient-centred care (PCC) in medical encounters is associated with better experiences of care and outcomes, yet the extent to which patients perceive PCC and its associated outcomes has not been well documented in healthcare reform literature.1 Literature, which is largely from high-resourced contexts, represents documentation concerning objective assessment of PCC and causal studies that highlight its value in routine care.2–7 Some of these studies have highlighted the causal links and how PCC can impact patient-reported experiences and mediate outcomes such as adherence to care medication, lifestyle, appointment keeping and glycaemic control in the chronic care context.4 6 8 Adherence to care plans as an outcome of PCC is pivotal to the attainment of treatment goals among patients with diabetes mellitus (DM).8 9 While these studies may be of high quality, there is a scarcity of studies on such kinds of objective assessment and causal links between PCC and management outcomes in low-income and middle-income countries such as Malawi, particularly among chronic care patients, where such care approaches could make a difference in patient management.1 10 11

Perception refers to the way in which a construct is regarded, understood or interpreted and, ultimately, experienced by the respective actors.12 Individual actors’ sociodemographic characteristics, culture, prior experiences and disease conditions have the potential to shape perceptions about PCC.13 While the debate regarding whose perceptions between healthcare providers (HCPs) or users matter in the assessment of PCC is ongoing, studies have shown that measuring patients’ perceptions of PCC is a reliable gauge of the delivery of care and its responsiveness.14 Evidence suggests that patients’ perceptions are more predictive of outcomes than are providers’ perceptions and interaction observation.2 13–15 Therefore, in any context, the heavy inclination on patients’ perceptions in assessing what matters in PCC and to what extent it is being delivered is justifiable since they are beneficiaries and the central object of care.

As an approach to care, PCC entails that patients are active participants in their care and that healthcare systems and their respective teams respond to patient needs and preferences. PCC is underpinned by a functional provider–patient interaction during medical encounters.16 In the Malawi context, PCC is conceptually understood as an expected care process that incorporates warm patient reception, where the HCP consciously aims to reduce the patient-HCP power gap to harness a good long-term relationship. This creates a conducive atmosphere that allows the gathering of information that holistically identifies the individual’s specific problems and all possible interacting factors, ensuring timely access to care and medication.17 Such interaction thrives within different organisational layers, namely individual provider–patient interaction, institutional and broader system, and contextual levels.18–20

PCC complements the biomedical aspects of care by facilitating the attainment of better patient-reported experiences and health status outcomes.7 11 21 Documented evidence on PCC outcomes is not consistent because of poor conceptualisation of PCC and challenges with randomisation of the studies. However, the results on the same are still largely promising.3 Some outcomes include patient satisfaction, perceived quality of care, patient adherence to management plans, reduced emergency visits, complications, patient empowerment and self-efficacy.3 7 22 Attainment of such outcomes is affected by patient factors, HCP and contextual factors. Likewise, pathways linking PCC to quality outcomes may not be direct but through intermediary outcomes or factors.23

Amidst the growing complexity of disease management plans and rising patient’ expectations, care delivery needs to shift from the traditional acute, episodic and biomedical models to embrace more PCC approaches. In the latter, provider–patient encounters are capable of integrating both technical and interpersonal aspects of care and dealing with biopsychosocial patient demands over time with the provider as a resource.24 Furthermore, emphasis should be placed on the fact that such interactions should foster partnerships with patients, leveraging their capabilities towards individual and population health promotion.24 ^(p.6) This being the case, PCC interactions would be fundamental to quality management of chronic patients, especially in limited resource contexts such as Malawi’s, particularly in this era of growing chronic non-communicable diseases (NCDs).25 Thus, interactional elements of medical encounters ought to be given due attention, assessing their value in impacting outcomes explored.

While Malawi, in its quality management directorate (QMD) for the health sector and the NCD and injury policies, strives to improve the delivery of quality care through people engagement and consideration of patients’ perspectives in care design and delivery. Current efforts in this area are, however, found wanting.25 Actually, documentation of perceptions about the quality of received DM care is sparse.1 21 26 The current QMD efforts have focused on suggestion boxes, promotion of patient charters and patients’ satisfaction surveys, which do not effectively elicit patients’ perceptions towards care design and delivery, thereby falling short of allowing safe spaces for patients to be effective participants in care.27 28 It is, therefore, imperative to explore patients’ perceptions of PCC in the chronic care context and its associated factors in order to adequately inform the implementation of the set policies. We, therefore, set out to assess the extent of patients’ perceptions of PCC and its correlates, using patients with DM as a case study.

Results

Discussion

Using the contextual operational framework, we found that most patients perceived low PCC as defined by fearful interactional ambience, less individualisation and involvement, and a poor organisation of care context. The extent of the poor PCC perception standing at 55.7% in this study was comparable with the Ethiopian studies (Bahir City and Addis Ababa) which found the perception of poor PCC at 53.7% and 51%, respectively.47 ,48 Both these studies showed significantly poorer PCC in public health facilities compared with private ones. This is possibly due to comparable resource challenges in the two contexts, where HCPs hardly have time to interact with their patients except to finish the queue.17 Malawi’s proportions of poor PCC (55.7%) are considerably higher compared with the SA study (16%).47 This is possibly due to the differences in the type of scales and the method used to dichotomise the scores. In the SA study, the dichotomisation of PCC scores was largely qualitative, while in our study, the categorisation of the scores was statistical and scientific with an unsupervised K-means clustering technique. Furthermore, it indicated cut-off points that made a statistical difference in eliciting management outcomes.49 This adds value to the construct validation of the tool, which this study considers a strength because it further dictates the level at which PCC would matter for improving outcomes.

Principally, the result highlights the inadequacies and inconsistencies in the delivery of PCC by providers during medical encounters, most deficient in the individualisation and patient involvement subscales. This finding is further corroborated by De Man et al, who in their systematic review of literature from sub-Saharan Africa lament the overly biomedical orientation of medical training and incentivisation in most African healthcare delivery systems.1 Medical training and healthcare delivery systems hardly value PCC approaches; therefore, most medical interactions in African contexts are overly paternalistic, with no due attention given to quality partnership building.28 While most studies mention organisational, structural and patient barriers as accounting for low PCC experiences in medical encounters, the biomedical orientation of service delivery, lack of time and overworked providers stand out in low resource contexts.17 28

The presence of complications and comorbidities predicts a negative perception of PCC. In their study, Kuipers et al show that people with multimorbidities and complications have compromised physical comfort and are therefore likely to report having perceived less PCC, especially if it does not respond to their current physical needs.50 Conversely, the results highlight the need to tailor PCC to those that need it most and the extent to which they need it because it matters in the realisation of PREMS and PROMS. The presence of complications and comorbidities comes with both emotional and physical discomfort, creating more complex patients’ care needs, hence the perceived need for more tailored PCC.51 The finding confirms that PCC, by its nature, should help HCPs unearth patients’ health needs and be responsive to them in unique ways that are satisfying to each patient’s situation. Concurrently, in our study population, there is a predominance of women who also have complications, which can explain the preponderance for women to perceive less PCC, just as Kuipers et al found in their study.50 The fact that location (rural vs urban), education status, sugar type and duration of disease did not affect the perception of PCC confirms that PCC is a need for all patients’ regardless of a social background; only the emphasised elements may evolve across visits.

The individualisation and involvement subscale were notably the least experienced, with lower mean scores than factors (relational and organisational) comparatively. Although patients perceived that their provider’s interactions were a little bit more relational, the human connection during the encounter was not adequate enough to create an environment for invitation and support for participation in care. Patients’ experiences of being acknowledged as unique individuals and involved in care in our study population are gloomy.52 Malawi alludes to the same in its quality management policy (QMD) where deficiencies in patient involvement in care were identified.27 Fearful interactional ambience, power imbalances, insufficient dialogue and patients’ own restrictive attitudes towards engagement with their providers deter patient involvement.52 There is a need for an adequate build-up from the creation of a good relational ambience to acknowledging patients, tailoring their care to their unique experiences and empowering and supporting them towards self-care behaviours.53 The human connection process, therefore, ought to manage power imbalances and patient vulnerabilities related to patient involvement. It makes sense, therefore, that without the enabling interactional environment in the encounters, patient involvement would hardly happen.

The perceptions of PCC as being positively associated with adherence are not surprising. PCC interactions in medical encounters have the potential to build health literacy and support and capacitate patients towards adherence to self-care behaviours.8 54 Thus, adherence is, in part, a marker of effective provider–patient interaction that has facilitated trust building, information sharing, patient involvement and support. Additionally, adherence is a cornerstone to the attainment of patient outcomes, glycaemic control and the prevention or delay of DM complications.55 The finding validates that PCC is not just a quality issue; it also impacts intermediate outcomes, including glycaemic control. Especially when patients are active partners in their care, they are better able to adhere to mutually agreed on goals of care. While we understand that glycaemic control and the reduction of complications is multifactorial, adherence to care management plans is an effective starting point if we are to achieve some gains in DM patient outcomes.

Surprisingly, the relationship between PCC and self-efficacy was not statistically significant in the path analysis. As a social cognitive resource, self-efficacy, especially as it relates to specific health-related self-care activities, requires a significant level of support during medical encounters through verbal persuasion by the HCP or peers, acknowledgement and validation of patients’ capabilities, and mastery of the activities.56 57 The general absence of empowering and supportive elements in the perceived PCC in this study may explain the non-significant relationship to start with. PCC goes beyond good relational ambience or friendliness to include support towards mastery of self-care competencies with the provider as a resource.58 Therefore, in contexts where there’s marked power imbalances between the patients and their providers, poor medical literacy, and patient self-confidence is low or is hardly harnessed, PCC supportive efforts during medical encounters need to acknowledge, validate and leverage patients’ capabilities in self-care for the attainment of better outcomes.22 57 59 The absence of a relationship between the PCC and self-efficacy may, in part, also be attributable to the fact that the study did not include other related or mediating constructs such as social support, health literacy and outcome expectations (person’s estimate that a given behaviour will lead to certain outcomes) which also impact self-efficacy.22 34 60

Self-efficacy and adherence independently predict better long-term glycaemic control in our study, which resonates with most studies.4 60 61 Haskard Zolnierek and Dimatteo, in their meta-analysis, highlight how PCC provider behaviours can enhance adherence by helping patients understand their illness, the treatment and its benefits, enhance collaborative partnerships and support for self-care.4 Thus, PCC that prioritises patient involvement works by capacitating patients to adhere to their treatment plans, thereby yielding better glycaemic control.7 11 30 Even though in our study PCC does not predict better self-efficacy, we see that self-efficacy itself is a predictor of better glycaemic control. According to social cognitive theory, self-efficacy has the potential to impact outcomes independently.22 60 61 In addition, our study found better glycaemic control among older patients compared with younger ones. Likely, with increasing age comes experience and mastery of self-care activities. Tertiary educational status being a predictor of self-efficacy in our study population is not surprising, as it may be regarded as a proxy for health literacy, an important element in the development of self-efficacy behaviours.62

Over two-thirds (70%) of the patients had poor long-term glycaemic control reported. It may be that there is general poor glycaemic control reported in this study and other studies emanate from other reasons, such as the chronic shortage of drugs alluded to through the qualitative phase of this study context.63^{(p. 108)} Within the study population, we concurrently found that access to DM medication was a yearned-for and yet lacking aspect of PCC. Thus, even though PCC predicts some marginal increases in adherence, patients may only be taking their drugs as and when they are available. Likewise, there may be more determinants of glycaemic control that this study did not elicit apart from adherence to drugs and lifestyle.54 Therefore, we advocate that PCC delivery must spill over beyond the interactional realm to stimulate larger organisational improvements if we are to make a significant difference in patient outcomes. Notably, therefore, in implementing PCC, healthcare delivery systems ought to strive to address the basic organisational issues such as access to medication and timeliness of care which matter to patients with DM.

The study confirms that the perception of PCC has potential to predict outcomes such as adherence and glycaemic control. The pathway linking PCC to glycaemic control is not direct but, rather, through adherence. The absence of a link between PCC and self-efficacy in this study has been attributed to the general absence of empowerment aspects of PCC in the study, which capacitates patients to feel confident in themselves to undertake self-care activities. The finding still validates the need for chronic PCC encounters to be supportive and empowering towards mastery of self-care.

The study recorded strengths and limitations that need to be borne in mind while making conclusions and applying the findings. The use of a locally developed and validated tool to measure the perception of PCC is novel and ensured contextual relevance of the tool. Again, the use of multiple and complementary analytical statistical methods in assigning patients into distinct subgroups (parallel analysis and unsupervised K-means clustering) ensured triangulation of findings, and the dichotomisation of PCC scores into high and low was scientific and used cut-offs that mattered in the determination of patient outcomes. The finding seems to suggest a probable minimum level of PCC that is required to mediate patient outcomes. Further interventional studies are required to validate this proposition.

Given the complex nature of PCC as a social behavioural construct, the use of both logistical regression into a path analysis ensures that the effect and direction of associations of significant covariates are well considered in the analysis models. The hierarchical nature in the employment of statistical methods ensured that the results were scientific and reliable.

Despite the above, the study records some shortcomings. First, being a cross-sectional, non-interventional study, it falls short of describing causal relationships between PCC and related outcomes. Second, PCC being a sociobehavioural phenomenon, has other determinants that may explain the relationships between itself and outcomes that were not considered in this study, such as social support and health literacy. Hence, some aspects that may mediate the associations between PCC and outcomes may not have been measured, thereby limiting the study’s ability to explain some associations or absence of others with certainty.

Notwithstanding these limitations, the results have highlighted potential relationships within the PCC-DM management pathway that can be further studied. This is significant because this is the first time a Malawian study has objectively assessed how patients perceive PCC; elucidating some patterns in the PCC-DM management-outcome pathway. Therefore, the findings have set a platform for subsequent exploration.