Envisaging better care for patients with complex multimorbidity in Aotearoa New Zealand
Anna Askerud
1 *
1
Abstract
Client-Led Integrated Care (CLIC) was implemented in general practices between 2018 and 2022 in the Southern region of New Zealand. It was envisaged to be an equitable, holistic and patient-centred inter-disciplinary framework of care for those with multiple long-term conditions; usually called multimorbidity.
This process evaluation aimed to determine whether CLIC supported self-management ability and assessed its alignment with current priorities for multimorbidity management.
Mixed methods were used across four purposively selected general practices. At each practice interviews were undertaken together with participant observation over 3 years. This was followed by analysis of annual self-report surveys.
CLIC worked well for those patients who were engaged, but the implementation provided minimal consideration of the resources required for everyone to receive culturally competent integrated care. Staff reported structural difficulties and wondered if the right patients were targeted.
CLIC did not address the needs of all participants, nor did it target those with the most ability to benefit. In all practices, despite increasing rates of multimorbidity and social complexity during a pandemic, the organisation of general practice and how it connected with the health system remained unchanged. Transitioning to a general practice system for complex multimorbidity will require changes in funding, strong leadership and clear communication. It requires all areas of the health system to provide an integrated health and social care system that is culturally competent and engages those most vulnerable in our community.
Keywords: ageing, chronic disease management, equity, general practitioners, health literacy, health systems, models of care, primary health care, workforce.
| WHAT GAP THIS FILLS? |
| What is already known: Long-term conditions programmes in NZ have traditionally been modelled on the Chronic Care Model from the United States (Wagner) and the Australian (Flinders) Partners in Health programme. In a changing health landscape, there is an increasingly diverse population with multimorbidity who need individualised and culturally competent care. The effectiveness of traditional programmes have been questioned, particularly for the most vulnerable people in our communities. |
| What this study adds: The Client-Led Integrated Care model did not uniformly address the needs of all patients, nor did it target those with the most ability to benefit. Implementing programmes for multimorbidity in primary care should take account of the need to prioritise equity and the social determinants of health. |
Introduction
Over 20 years ago a new paradigm, the Chronic Care Model (CCM), was developed in the United States to support the effective care and management of those living with chronic conditions in primary care.1 The CCM proposed that informed and proactive interprofessional teams of health professionals would work individually with patients with multimorbidity (MM) to develop care plans that would improve their ability to manage the conditions they live with.1 This model was later expanded by Barr et al.2 to encompass a population health approach. Providing self-management support through assessment and care planning has received support from health planners and funders. This has been promoted by the World Health Organization (WHO) and widely utilised in other countries.3–5 Systematic reviews suggest that personalised care planning as part of self-management support has the potential to promote effective care leading to improved health outcomes. The reviews also reveal that further research is required to determine which aspects of these strategies are the most effective.6–8
One in four New Zealanders have MM9 with these patients known to be the highest users of the healthcare system.9 For indigenous populations and those disadvantaged by socioeconomic deprivation, MM occurs more often and at an earlier age.9,10 Multiple research studies have revealed that, although the CCM provided a basis for establishing long-term conditions programmes in primary care, its single issue/condition focus has limited its effectiveness in MM.4,5
Despite the above limitation and a lack of a detail on how to implement the CCM, approaches based on this framework continue to be developed. Self-management support programmes are seen as an important strategy to address both the growing number of older adults and an increasing multimorbid population. The revised CCM required health systems to re-orientate to encompass a more person-centred approach in order to empower people to self-manage their health11 Health systems globally, however, have struggled to both re-design how health care is delivered and to successfully encourage some of the most vulnerable people in society to self-manage their health.12–14
In the Southern region of New Zealand (NZ) the Client-Led Integrated Care (CLIC) model was intended to encompass the 5–8% of the population with the most complex care needs associated with MM in general practice.15 CLIC was part of the 2017 Southern Primary Community Care Strategy which encompassed a broad range of general practice initiatives, including the introduction of Health Care Homes (HCH).15
The CLIC model of care
CLIC included annual individual assessment consultations, development of personalised care plans, case management and inter-disciplinary team meetings. Care plans were expected to be electronically accessible in both primary and secondary care to facilitate integrated care. When CLIC patients presented for their annual assessment they were asked to rate their ability to self-manage their health issues using a self-rating survey, originally developed by the Australian (Flinders) self-management programme ‘Partners in Health’ (PIH).16 This was returned to the Primary Health Network who collated all PIH surveys across the region.
People in CLIC were prioritised for extra resources depending on their risk of hospitalisation, with those most likely receiving enhanced support. Support focused on regular consultations that encompassed discussions on health lifestyle choices, managing medications and establishing and monitoring person-centred goals determined in the mutually developed care plans.17 Inter-disciplinary meetings, community pharmacists, health improvement practitioners and health coaches were provided in some practices depending on space and resource availability.
This process evaluation aimed to:
Determine whether the Southern region CLIC model, based on concepts from the CCM framework and the Flinders self-management programme, strengthened self-management ability for those with MM, and whether it supported integrated care.
Explore whether CLIC aligned with current health strategies and priorities for MM management in NZ.
Method
This study was reviewed and approved by Te Whare Wānanga o Otāgo University of Otago Human Ethics Committee (H19/086). It was also approved by the Ngai Tahu Research consultation committee. All participants provided written informed consent.
Study design
This process evaluation18 was conducted with four purposively selected general practices in the Southern region of NZ over a 3 year period (2019–2022). The methods below were undertaken sequentially:
| Site | Patient | Nurse | General Practitioner | Administrator | Total | |
|---|---|---|---|---|---|---|
| Urban | 2 | 5 | 2 | 1 | 10 | |
| Urban | 2 | 3 | 2 | 3 | 10 | |
| Rural | 4 | 4 | 0 | 1 | 9 | |
| Rural | 4 | 5 | 1 | 1 | 11 | |
| Primary Health Network | 5 | |||||
| 12 | 17 | 5 | 6 | 45 |
| Characteristics | Practice 1 (Pilot) | Practice 2 | Practice 3 | Practice 4 | ||
|---|---|---|---|---|---|---|
| Location (rural/urban) | Urban | Rural | Rural | Urban | ||
| Practice population size | Medium (5737 patients) | Medium (6474 patients) | Medium (8201 patients) | Large (14,970 patients) | ||
| Practice business model | Traditional | Traditional | Trust | Corporate | ||
| Workforce configuration | Registered nurses, nurse practitioners, healthcare assistants | 3.8 full-time equivalent (fte) | 5.2 fte | 10 fte | 11 fte | |
| Doctors | 6 fte | 5 fte | 5 fte | 7 fte | ||
| Patient demographics (2018 Census data) | Deprivation index | 9 | 4–5 | 3–4 | 3–4 | |
| Ethnicity mix | European 4623 (80%) | European 5544 (86%) | European 6685 (82%) | European 11253 (75%) | ||
| Māori 588 (10%) | Māori 631 (10%) | Māori 841 (10%) | Māori 2358 (16%) | |||
| Pacific Island 212 (4%) | Asian 147 (2%) | Pacific Island 192 (2%) | Pacific Island 574 (4%) | |||
| Asian 199 (3%) | Asian 382 (5%) | Asian 641 (4%) | ||||
| Other 106 | Unknown 15 | Other 141 | ||||
| Unknown 3 | ||||||
| Date began using CLIC | May 2019 | 2018 | 2018 | Early 2019 |
| Practice | Total PIH completed | Ongoing PIH (≥2) | Total positive or nil PIH change (%) | Total negative change in PIH (%) | Mean, standard deviation (standard error) | ≥2 PIH completed (%) | ≥3 PIH completed (%) | |
|---|---|---|---|---|---|---|---|---|
| 1 (2019–2022) | 128 | 16 (12%) | 38 | 63 | −4.6, 11 (0.97) | 13 | 0 | |
| 2 (2017–2022) | 758 | 223 (29%) | 54 | 46 | −0.8, 14 (0.91) | 45 | 13 | |
| 3 (2017–2022) | 949 | 223 (23%) | 49 | 51 | −0.9, 13 (0.89) | 41 | 13 | |
| 4 (2019–2022) | 1199 | 385 (32%) | 53 | 47 | −0.7, 14 (0.70) | 39 | 8 |
| Practice | PIH Māori (%) | ≥2PIH Māori (%) | PIH Pacific (%) | PIH ≤65 years (%) | PIH ≤ 65 years ≥ 2 PIH (%) | Mean Māori | Mean Pacific | Mean ≤65 years | |
|---|---|---|---|---|---|---|---|---|---|
| 1 (2019–2022) | 6 | 0 | 6 | 31 | 0 | 1.0 | -1.0 | 1.6 | |
| 2 (2017–2022) | 6 | 6 | 0.4 | 9 | 2 | 4.0 | 0 | 6.0 | |
| 3 (2017–2022) | 4 | 2 | 2 | 11 | 2 | 0.7 | 3.5 | 4.5 | |
| 4 (2019–2022) | 1 | 4 | 4 | 17 | 1 | 0.8 | −1 | 1.4 |
Setting and selection of practices
The Southern region of NZ has a population of approximately 350,000 within the regions of Southland and Otago. These are geographically large areas with a relatively small population. There are two main urban areas (Invercargill and Dunedin) with large rural hinterlands. The four practices approached for the process evaluation were selected from the Primary Health Network (PHN) database of general practices who provided an overview of the composition of each of the 83 general practices under their management.
Participants
The initial general practice was selected through access, availability and geographical location, while further practice selection was an iterative process to ensure variation. The overall strategy was to ensure that each subsequent practice would be different in size, enrolled population, demographics, workforce, management style and geographical location. The practices utilised in this research also represent three different business models of general practice out of the seven possible models identified by Sheridan et al.19 See Table 2 for a comparison of the general practices in the study. This research was undertaken during the COVID-19 pandemic which altered the data collection timeframes and the timing of face-to-face interviews.
Data collection
Acquisition of data was sequential. Qualitative data (interviews and participant observation) were collected and analysed as practice visits occurred and then examined collectively across the practices between 2019 and 2022. The quantitative data from the PIH surveys completed by CLIC patients were provided to the researcher in late 2022 by the PHN.
Data analysis
Following the steps to undertake a process evaluation,18 data from each set of interviews and observations for each practice were coded for categories using N-vivo 13 software (2020), before subsequent data were collected. Preliminary themes from each analysis were built upon and modified iteratively using mind mapping to workshop these with research supervisors in order to refine the themes.20 Three years of CLIC patient surveys were analysed once all practice visits and interviews had been completed. Descriptive analysis21 was undertaken to describe how CLIC patients rated their ability to self-manage through the 3 years of the research.
Results
Observations in each practice revealed significant differences in CLIC implementation. Those practices that had previous experience of a structured MM programme transitioned more easily to CLIC. The data analysis initially identified eight key themes. These were person-centred care, health organisation, workforce, equity, complexity, care planning, goal setting and collaborative care. From these, enablers and barriers in the implementation of CLIC were identified in the practices (Fig. 1).
Qualitative results
People enrolled into CLIC who were already well engaged in their general practice found that CLIC enabled them to continue enjoying a continuity of care and long-term relationships with healthcare professionals.
Well I think it helps if people know who you are and what you are doing. They’ve got a pretty good record on me now! (Patient, Practice 2)
CLIC was recognised by some practices as an enabler to health care for the most vulnerable people in the practice, particularly during a global pandemic. They acknowledged that in a changing health landscape, practices had increasingly diverse populations that need individualised and culturally competent care.
But we will be going to actively manage people that just won’t come in. We have to look at this differently because we’re getting 70% of the patients that come in. But we still have patients that we can’t reach because they simply won’t come. So, we have to look at it differently. Do we go out to the community? (Nurse 2, Practice 3)
Those practices that had a legacy of working in a collaborative MM programme prior to the implementation of CLIC were able to more easily embrace an effective interprofessional model of care. The PHN felt they were also better able to navigate the challenges and upheaval of the COVID-19 pandemic while still maintaining the CLIC model.
It’s only anecdotal, but certainly the practices who’d taken something of a more proactive way of dealing with people with long term conditions said, COVID wasn’t quite as bad. If it hadn’t been for those things COVID would have been an absolute dog. It was tough enough, but without those changes to the mindset it would have been worse. (PHN 4)
The concept of teamwork was revealed as an important enabler, with practices reporting that all members of the general practice team were required to work together to successfully enact CLIC. This required a significant change of practice culture. As the model developed, changing current general practice staffing to incorporate the wider health professional team, such as pharmacists, health improvement practitioners and health coaches, was shown to be important in successfully working with people living with complex health and social needs. Practices that comprehensively embraced CLIC as a team by altering their practice culture and incorporating champions reported increased success with CLIC. Strong leadership and excellent communication were articulated by practice staff and patient participants as key factors in CLIC’s success in some practices as described here:
I think that it’s freed up the clinicians. The nurses have got more time when it’s CLIC done alongside Health Care Homes. I think that they’ve seen there is a different way to work. It has to have a multi-disciplinary focus. It has to belong to everyone … Social workers, physios, OT’s are hugely valuable … It can’t just be one role, it can’t just be a nursing role. (Nurse 2, Practice 2)
Barriers
For practices new to a structured model of long-term conditions support, there was widespread confusion as to the overall vision and outcomes of CLIC. Lack of preparation acted as a barrier to enact such a comprehensive model of care as suggested by the following participant, a general practitioner (GP) CLIC champion:
I think there’s a gap of understanding from the PHN of how busy general practice is … because it really was probably too much … You know all these things that we do all the time it’s just another and another. And because no one really got what was going on, you know when you don’t understand the whole thing. It’s far too hard. (GP 2, Practice 1)
All practices felt that CLIC funding rules were targeted at the wrong demographic which acted as a barrier to targeting those with the greatest ability to benefit. They said the highest amount of CLIC funding was attributed to older people who were entrenched in their lifestyles and either unable or unwilling to engage in self-management to improve their health. This meant that suggested behaviour modifications needed for self-management as part of the CLIC model were unfeasible:
I’m talking 70 year olds and above … the ambulance is clearly parked at the bottom of the cliff. The ones that we can make the least change are getting the most funding. And the ones that might just be newly diagnosed with type 2 diabetes … they are still very able-bodied and motivated to make change – they’re … getting no funding. They’re the ones we should be targeting and we have no way to do that with this model. (Nurse 2, Practice 1)
Integration with secondary care was another barrier with practice staff unsure whether their care plans were being seen when CLIC patients were admitted to the hospital. This resulted in a reluctance by practice staff to complete the care plans.
They [secondary care services] will not look at that [the care plan]. They are just too busy for that. They are just dealing with the acute issues. (GP1, Practice 4)
Patient’s involvement in and enthusiasm for CLIC was hindered by the requirement to pay for ongoing CLIC appointments in order to remain enrolled in the programme. With previously subsidised appointments for those with MM now not available within the CLIC model, practices were tasked with selling a model of care with no clear financial advantage to the patient and a barrier to those with limited finances. This discomfort was evident across all four practices.
I don’t think that patients really felt that they were getting anything out of it because the expectation was that it was going to be cheaper. So, when we transitioned from Care Plus to CLIC, a lot of people said, ‘well if I’m not getting any benefit out of it, why would I want to do it?’. (Nurse, Practice 3)
The demanding requirements for practices to schedule an hour-long yearly assessment with CLIC patients and produce multiple care plans was also a barrier. Practices reported difficulties incorporating these requirements into current practices. With many CLIC consumers being older and some living with disabilities or rurally based, travelling to and completing lengthy assessments brought some challenges.
Those elderly people with mild dementia. It’s extremely challenging going round in circles in a fishbowl with someone for an hour. And then recently we had someone who was deaf. So they haven’t thought about people with disabilities and how we can assess them. (Nurse 1, Practice 2)
Quantitative results (PIH annual survey)
The CLIC programme utilised the PIH self-assessment survey to track CLIC patients’ rating of their self-management skills over the years of the study (Tables 3, 4). This survey was intended to provide the PHN with a longitudinal and quantifiable score of how CLIC patients self-rated their capability and ‘activation’ to self-manage as they progressed through CLIC.
Overall there was variability in the number of patients who completed all three surveys and low numbers completed by Māori.
The high standard deviation for all the case study practices indicates that there was a wide variance of results from people completing the PIH over multiple years. The mean for all practices was negative (with some variation and some only slightly negative), meaning overall successive PIHs revealed, not unexpectedly, a worsening ability to self-manage.
Integration of results
The PIH dataset augments the qualitative dataset by highlighting the variable implementation of CLIC between practices and, in particular, the better results of two practices (practice two and three). These practices had more time to embed the programme prior to the COVID-19 pandemic as they implemented CLIC earlier than the other two practices. They were also able to sustain CLIC over the course of the 4 years of the pandemic. Practice four was able to enrol many more CLIC patients than any other practice during this research. This practice is part of a network of general practices and therefore had more administration and financial resources. The small urban practice (practice one), which began CLIC in late 2019 and had no legacy of a long-term conditions programme, struggled to implement CLIC. Over the years of the pandemic, this practice halted the CLIC programme due to acute COVID-19 issues. A significant finding in the PIH dataset was within the smaller groups surveyed. People aged less than 65 years, along with Māori and Pacific people, initially demonstrated a positive result. This was shown to decline over time suggesting a waning engagement in CLIC.
Discussion
Since the late 1990s, increasing presentations of chronic conditions in general practice in NZ have resulted in the development of many different self-management support programmes.22–25 These have usually been based on the CCM.26,27 Increasingly, in NZ and internationally there is a focus on particular programmes for those with MM.9,28 Fundamental principles of these programmes have been self-management support, patient-centred care, care planning and goal setting through shared and collaborative models of care.25 General practice has been asked by the NZ government since 200429 to change its focus from an episodic acute care approach to this more holistic team-based, structured model of care which is integrated with secondary care services and emphasises self-management. This is based on the idea that such approaches empower people with MM to gain knowledge and make healthy lifestyle choices in order to stay well and reduce utilisation of healthcare services.30
As in other countries,9,31,32 working towards an integrated and interprofessional team model of MM care requires considerable change management and this was found to be challenging at different levels of the system during the implementation of CLIC. The PHN that directed the implementation of this model, increasingly realised they had underestimated both the ability of general practice to quickly enact such a comprehensive and holistic model of care and the complexity of working with MM in general practice. The general practice workforce felt unprepared to implement CLIC and often had little capacity to embed the model, particularly during a global pandemic. As other countries have found,33 trying to sustain MM care during the COVID-19 pandemic and maintain continuity of care, an important enabler of self-management approaches, was almost impossible with workforce shortages and the demands of the pandemic diverting many general practice staff to acute issues.34
The majority of people enrolled in the CLIC programme were aged over 65 years, but the total numbers enrolled were not able to be sustained in the programme for more than 2 years and these patients often rated their self-management ability as declining over these years. This decline through progression of their illnesses may have been inevitable, irrespective of their self-management skills, as others have found.35 Because of this, many practices felt that younger patients (under 65 years), who were newly diagnosed with a long-term condition would benefit more from the programme. Other countries have noted this also.36
The study shows, in addition to staff difficulties in implementing CLIC, the model was not uniformly effective because people’s access to and engagement with health and social services, and the ability to self-manage their health, is complicated. This complexity was not accounted for in the theoretical foundations of the CLIC model. Although it was slow to gain traction, CLIC generally worked well for those people with MM already engaged in their general practice who had the agency, capability and resources to take up the support offered and this has been noted internationally.37 It is now generally accepted that the root cause of health outcomes is associated with the social determinants of health (SDOH), which can either be protective or confer risk.22,28 This study showed there was little or no consideration of the personal resources required for people of varying capabilities to engage in CLIC, nor an understanding of the lack of funding in primary care to effectively address poverty and those negatively affected by the SDOH, particularly those who are Māori.
NZ has begun to implement a health system with a focus on equity, particularly for Māori, but also for those most negatively affected by the SDOH. How this will be achieved is still unknown.
Strengths and limitations
Using several methods in the process evaluation allowed for a variety of perspectives and was particularly useful during the years of the COVID-19 pandemic when access to general practice and the PHN was difficult. The relationships built with general practice teams and interviews alongside participant observation over time were valuable in providing insight into CLIC. Accessing the PIH scores automatically at the conclusion of this research provided an additional perspective that would not have been gained by interviews and participant observation alone.
More patient feedback would have enhanced this research, but due to the COVID-19 pandemic, access to CLIC patients was difficult. The pandemic impacted the implementation of CLIC for general practices in this research and this also provides an important perspective regarding access to health in times of crisis.
Conclusion
CLIC, a model of care for complex MM implemented in the Southern region of NZ between 2018 and 2022 was envisaged to be a holistic and comprehensive model of care. This research has revealed that there were challenges in implementing CLIC for both staff and patients. Although there was increasing complexity and a global pandemic during the implementation of CLIC, the organisation of general practices in this region and how they connected to the wider health system remained largely unchanged.
The financial and social burden for those with MM is largely unrecognised in current models of general practice care and, together with a lack of cultural attunement, this contributes to a lack of engagement and the limited success of these programmes. Designing an MM programme that engages the most vulnerable members of our population and those most able to benefit from self-management support are a key consideration in future programme development. It is likely that a collaborative person and whānau-centred model of MM care that utilises care co-ordination, continuity and shared care planning with an appropriately prepared and informed interprofessional team integrated with other services in the health system is the answer.
Data availability
The data that support this study are available at https://ourarchive.otago.ac.nz at the University of Otago Library [http://www.otago.ac.nz/library] at http://hdl.handle.net/10523/16270.
Declaration of funding
This research received some funding from the HOPE Foundation, South Link Education Trust and WellSouth primary health network.
Acknowledgements
The author acknowledges the support of Chrystal Jaye, Fiona Doolan-Noble and Eileen McKinlay.
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