Viewpoint
Volume 47, Issue 1–2, January–February 2018

The experiences of patients and carers living with multimorbid, non-communicable diseases

Stephen R Leeder    Tanisha Jowsey    Justin W McNab   
doi: 10.31128/AFP-09-17-4344   |    Download article
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Background
Non-communicable diseases (NCDs) are increasing in prevalence and straining health systems globally. This creates a so-called ‘burden of disease’, which can be traced in terms of fiscal health system matters and in terms of quality of life and lived experiences of people with NCDs. The United Nations has called for a global agenda to manage NCDs and reduce their burden.
Objective(s)
The purpose of this article is to summarise key findings from the Serious and Continuing Illness Policy and Practice Study concerning patients’ and carers’ experiences of multimorbid NCDs in Australia. We focus on the relevance of findings for policy and general practitioners in Australia.
Discussion
We suggest that a complex multimorbidity policy is needed to contextualise and guide single-illness NCD policies. Our research suggests that specialist NCD nurses and allied health professionals could have important roles in improving care coordination between general practices and community health centres.
 

ArticleImage

Non-communicable diseases (NCDs), such as coronary heart disease, stroke, cancer, musculoskeletal disorders and mental illness, among others, are increasing worldwide and account for 63% of deaths worldwide.1 In Australia, the prevalence of comorbid and multimorbid NCDs is high.2

The origins of NCDs lie deep within the social, political and economic structures of society. International concern led the United Nations (UN) General Assembly to convene a high-level meeting on the prevention and management of NCDs in September 2011.3 The UN’s only previous discussion on health was on acquired immune deficiency syndrome (AIDS) in 2001.

The UN General Assembly set out to ‘adopt a concise, action-oriented outcome document that will shape the global agendas for generations to come’.4 The outcomes document was a political statement, which, although not binding, is a powerful tool for achieving international cooperation and action. The UN directed the World Health Organization (WHO) to implement its resolutions. The WHO identified three principal fields for action – cultural, economic and educational1 – and established goals, targets and monitoring mechanisms. However, the challenge is almost overwhelmingly difficult. Indeed, when preparing for the 2018 high-level meeting to assess progress, a WHO report in November 2016 noted:5

Globally, premature mortality from these four main NCDs [cardiovascular diseases, cancers, chronic respiratory diseases and diabetes] declined by 15% between 2000 and 2015. These improvements are estimated to be mainly due to reductions in cardiovascular and chronic respiratory disease mortality. Under a business-as-usual scenario (without scaling up efforts significantly) this rate of decline is insufficient to meet the [goal to] reduce premature mortality from NCDs by one third [by 2030]. This is the key message to frame the discussions during the preparatory process leading to the third UN High-level Meeting on NCDs in 2018.

Prevention is difficult because it requires action regarding the social determinants of health. Additionally, organising care for patients with NCDs is complex and costly. Multimorbidity adds another layer of complexity. Here, we refer to complexity in terms of layers of complications and the difficulties it brings to the patients’ or carers’ experiences, rather than complexity theory, despite their obvious similarities in terms of non-linearity and change.

The complexity around organising care for patients with NCDs is reflected in NCD multimorbidity literature. Part of the complexity is often framed as a result of the sheer number of illnesses, each with its own management regimen.6–11 The number of illnesses almost certainly influences overall lifestyle and management capacity.12 Harrison et al suggest that a person with three or more discrete NCDs is likely to have complex care needs.7 They proposed the term ‘complex multimorbidity’ to differentiate between such patients and those with two NCDs, or with NCDs in the same ‘system’ or ‘domain’ (see below) and with less need for complex care. Because the number of chronic conditions increases with age, the average Australian aged 75 years with an NCD can expect to have illnesses in three or four domains.6

Another layer of complication presents as NCDs that are commonly reported in physiologically unexpected specific comorbidities, such as heart failure and depression.9,12 Such pairings are referred to as being within the same ‘system’ or ‘domain’,6 and as being either concordant (ie diabetes and obesity, diabetes and chronic kidney disease) or discordant (ie diabetes and asthma, diabetes and depression).13,14

Finally, the complexity is detailed in literature concerning patients’ experiences15–17 and the impact of multimorbidity on quality of life.18 
 

Serious and Continuing Illness Policy and Practice Study

In 2008, the Menzies Centre for Health Policy at the Australian National University and University of Sydney embarked on a study to examine the experience of patients with NCDs in Sydney’s western suburbs and Canberra. The Serious and Continuing Illness Policy and Practice Study (SCIPPS), funded by the National Health and Medical Research Council, sought to explore the major challenges to patients and their informal (usually family) carers in managing and living with a chronic disease. The purpose of this article is to summarise key findings from the SCIPPS around patients’ and carers’ experiences of multimorbid NCDs in Australia, and to discuss their relevance for general practitioners (GPs) and policy.

In designing the study, patients with chronic respiratory problems and/or cardiovascular disease (especially heart failure) and/or diabetes were invited to participate. Data from more than 60 interviews provided detailed insights into the:

  • physical and emotional demands on patients and carers
  • economic consequences of chronic illness, where patients and carers had necessarily ceased paid employment and where social security benefits did not cover the full costs of care
  • misery and social isolation resulting from limited mobility, pain, breathlessness and weakness.

Most participants had more than one NCD. Many of those who lived at home were cared for by family members or friends who, themselves, suffered from one or more NCDs.

Specific troubles raised by multimorbidity

Eighty-seven per cent of respondents had more than one NCD.19 Having more than one NCD made it more difficult for respondents to control contributory factors and health-preserving behaviours, especially exercise.20 In addition, having more than one NCD complicated the recognition of early symptoms or signs of deterioration of each condition (eg swollen ankles, indigestion), and managing multiple medications was not always easy.15 Almost half of those with more than one NCD reported being on >20 prescribed medications, each with its own regimen, side effects, and dietary and other restrictions. Not surprisingly, they found medication management ‘complicated, time-consuming, inconvenient and confusing’.

Some NCDs are particularly arduous. Respondents with chronic obstructive pulmonary disease (COPD) or diabetes spent more time managing their health than people with other NCDs.21 The type of NCD seemed to be a better predictor of quality of life than the number of NCDs. This is illustrated with COPD, an illness that typically takes more time to manage than other NCDs, and which significantly diminishes a patient’s quality of life.22 The high level of multimorbidity in our study reflects the high level in the broader society, as shown in recent hospital separation data (Table 1).
 

Table 1. Patient and hospital separations with multimorbidities, Western Sydney Local Health District residents, >18 years, 2014–15
Multimorbidities WSLHD
n % Rate
Diabetes and COPD 441 3.5% 0.2%
COPD and cardiovascular 1,185 9.4% 0.5%
Diabetes and cardiovascular 10,358 82.0% 4.0%
Diabetes, cardiovascular and COPD 645 5.1% 0.2%
Separations with selected morbidities 12,629 100.0% 4.8%
Total number of separations (>18 years ) 261,303
Source: Admitted Patient, Emergency Department Attendance and Deaths Register, NSW Ministry of Health, Secure Analytics for Population Health Research and Intelligence – courtesy of Helen Achat
COPD, chronic obstructive pulmonary disease; WSLHD, Western Sydney Local Health District
 

Policy implications

The SCIPPS spoke to more than 100 healthcare practitioners, in focus groups and round-table meetings, about participants’ experiences, and the associated management and policy issues. The healthcare practitioners suggested that efforts to support patients and carers must encompass all facets of the impact of multimorbidity on lifestyle.23

Although chronic diseases often share common features, patients’ needs differ with specific disorders and often require special care (eg diabetes, compared with chronic respiratory illness).20 In planning models of care for patients with NCDs, differences and commonalities must be considered.

In Australia and New Zealand, policies for NCD management are oriented towards single illnesses.24 Because most people with NCDs suffer from more than one NCD, we endorse the proposal of Harrison et al that single–illness oriented NCD policies be housed under an overarching multimorbid ‘umbrella’ policy – the ‘complex multimorbidity’ policy.7

Careful thought (and money) is needed to turn this aspiration into effective policy. Insofar as policy is the mechanism of allocating resources to achieve goals, judicious financial planning is imperative. First, appropriate models of care need to be defined and worked through with the involved professional groups, including GPs, community health workers, hospital staff and others.25–27 Multimorbidity calls for different configurations of the healthcare profession, which previously served the community well in eras dominated by acute illness and episodic care. Studies concerning health service interventions28 and polypharmacy29,30 may also shed light on the best way forward.

Second, the resource implications of this re-fit approach must be hammered out in the larger context of general health policy and overall resource allocation. This would require political action federally to obtain appropriate attention from the federal Department of Health.

Implications for Australian GPs

Those determining current policy and resource allocation seem not to know, or prefer not to know, what is happening on the frontline. GPs have to negotiate the divide between treating single illnesses and the needs of patients with multimorbid NCDs. GPs manage the latter by relaxing their specific management goals and striving to ‘maintain the status quo’.31 Tackling the accompanying polypharmacy remains difficult for GPs and pharmacists, but is crucial in order to achieve better outcomes for patients. There are many publications that address polypharmacy in patients with multimorbidity, especially older people. These publications encourage regular reviews of medication, and provide evidence of surprisingly little consequence from judiciously stopping drug treatment of non–life threatening illnesses.32

One bright spot for GPs was identified in the second phase of SCIPPS. This was the possibility of improving care coordination between general practices and community health centres, where specialist NCD nurses and allied health professionals (ie nutritionists, dietitians, occupational therapists, podiatrists, others) care for patients with multimorbidities.

A SCIPPS evaluation of a New South Wales Ministry of Health program, which was designed to better coordinate such care through a specialist liaison nurse role, showed promise.33,34 GPs, community health centre staff and management all reported improved coordination of services, and better integrated health and social care.35,36 Defined, but flexible, policy aims and objectives assisted in establishing and meeting local needs and priorities. These, in turn, fed into the observed improvement. Patient and practitioner satisfaction increased. The complex Australian health system, geared, as it is, towards the provision of single, acute episode care is, however, resistant to isolated attempts at local-level integration and threatens sustained long-term change.

Conclusion

Although we have the attention and goodwill of the UN, through the WHO, to make a positive difference in NCD prevention and management, the reality remains grim for the lifestyles of many patients with multimorbidity and their carers. Advocacy on their behalf, combined with growing awareness of the inefficiency of using episodic services for a purpose for which they were not designed, could lead to change. At the heart of any proposed change should be the experience of each patient and their informal carer. It is the patients’ lives, their lifestyles and their quality of life that must be afforded primacy in any proposed way forward.
Competing interests: None.
Provenance and peer review: Commissioned, externally peer reviewed.
Acknowledgements
The authors greatly value the contribution of Dr Peter Arnold in preparing this article. The work was supported by the Menzies Foundation and the National Health and Medical Research Council.
References
  1. UN News Centre. UN launches global campaign to curb death toll from non-communicable diseases. Geneva: United Nations, 2011. Available at www.un.org/apps/news/story.asp?NewsID=39600#.WbdCXbIjFeM [Accessed 12 September 2017]. Search PubMed
  2. Caughey GE, Vitry AI, Gilbert AL, Roughead EE. Prevalence of comorbidity of chronic diseases in Australia. BMC Public Health 2008;8(1):221. Search PubMed
  3. United Nations. Political declaration of the high‑level meeting of the general assembly on the prevention and control of non-communicable diseases. Geneva: UN, 2012. Search PubMed
  4. World Health Organization. A conceptual framework for action on the social determinants of health: Social determinants of health discussion paper 2. Geneva: WHO, 2010. Search PubMed
  5. World Health Organization. Sustainable development goals overview. Geneva: WHO, 2016. Search PubMed
  6. Britt HC, Harrison CM, Miller GC, Knox SA. Prevalence and patterns of multimorbidity in Australia. Med J Aust 2008;189(2):72–77. Search PubMed
  7. Harrison C, Britt H, Miller G, Henderson J. Examining different measures of multimorbidity, using a large prospective cross-sectional study in Australian general practice. BMJ Open 2014;4(7):e004694. Search PubMed
  8. Barnett K, Mercer SW, Norbury M, Watt G, Wyke S, Guthrie B. Epidemiology of multimorbidity and implications for health care, research, and medical education: A cross-sectional study. Lancet 2012;380(9836):37–43. Search PubMed
  9. Islam MM, Valderas JM, Yen L, Dawda P, Jowsey T, McRae IS. Multimorbidity and comorbidity of chronic diseases among the senior Australians: Prevalence and patterns. PLoS One 2014;9(1):e83783. Search PubMed
  10. Fortin M, Bravo G, Hudon C, Vanasse A, Lapointe L. Prevalence of multimorbidity among adults seen in family practice. Ann Fam Med 2005;3(3):223–28. Search PubMed
  11. Harrison C, Henderson J, Miller G, Britt H. The prevalence of diagnosed chronic conditions and multimorbidity in Australia: A method for estimating population prevalence from general practice patient encounter data. PLoS One 2017;12(3):e0172935. Search PubMed
  12. Islam MM, Yen L, Valderas JM, McRae IS. Out-of-pocket expenditure by Australian seniors with chronic disease: The effect of specific diseases and morbidity clusters. BMC Public Health 2014;14(1):1008. Search PubMed
  13. Burgers JS, Voerman GE, Grol R, Faber MJ, Schneider EC. Quality and coordination of care for patients with multiple conditions: Results from an international survey of patient experience. Eval Health Prof 2010;33(3):343–64. Search PubMed
  14. Ricci-Cabello I, Stevens S, Kontopantelis E, et al. Impact of the prevalence of concordant and discordant conditions on the quality of diabetes care in family practices in England. Ann Fam Med 2015;13(6):514–22. Search PubMed
  15. Jowsey T, Jeon YH, Dugdale P, Glasgow NJ, Kljakovic M, Usherwood T. Challenges for co-morbid chronic illness care and policy in Australia: A qualitative study. Aust New Zealand Health Policy 2009;6:22. Search PubMed
  16. Bayliss EA, Ellis JL, Steiner JF. Barriers to self-management and quality-of-life outcomes in seniors with multimorbidities. Ann Fam Med 2007;5(5):395–402. Search PubMed
  17. Morris RL, Sanders C, Kennedy AP, Rogers A. Shifting priorities in multimorbidity: A longitudinal qualitative study of patient’s prioritization of multiple conditions. Chronic Illn 2011;7(2):147–61. Search PubMed
  18. Fortin M, Bravo G, Hudon C, et al. Relationship between multimorbidity and health-related quality of life of patients in primary care. Qual Life Res 2006;15(1):83–91. Search PubMed
  19. Jeon YH, Jowsey T, Yen L, et al. Achieving a balanced life in the face of chronic illness. Aust J Prim Health 2010;16(1):66–74. Search PubMed
  20. Corcoran KJ, Jowsey T, Leeder SR. One size does not fit all: The different experiences of those with chronic heart failure, type 2 diabetes and chronic obstructive pulmonary disease. Aust Health Rev 2013;37(1):19–25. Search PubMed
  21. Yen L, McRae IS, Jowsey T, et al. Health work by older people with chronic illness: How much time does it take? Chronic Illn 2013;9(4):268–82. Search PubMed
  22. Jowsey T, Yen LE, Bagheri N, McRae IS. Time spent by people managing chronic obstructive pulmonary disease indicates biographical disruption. Int J Chron Obstruct Pulmon Dis 2014;9:87–97. Search PubMed
  23. Yen L, Gillespie J, Rn YH, et al. Health professionals, patients and chronic illness policy: A qualitative study. Health Expect 2011;14(1):10–20. Search PubMed
  24. Aspin C, Jowsey T, Glasgow N, et al. Health policy responses to rising rates of multi-morbid chronic illness in Australia and New Zealand. Aust N Z J Public Health 2010;34(4):386–93. Search PubMed
  25. Bower P, Macdonald W, Harkness E, et al. Multimorbidity, service organization and clinical decision making in primary care: A qualitative study. Fam Pract 2011;28(5):579–87. Search PubMed
  26. Sinnott C, Mc Hugh S, Browne J, Bradley C. GPs’ perspectives on the management of patients with multimorbidity: Systematic review and synthesis of qualitative research. BMJ Open 2013;3(9):e003610. Search PubMed
  27. Luijks HD, Loeffen MJ, Lagro-Janssen AL, van Weel C, Lucassen PL, Schermer TR. GPs' considerations in multimorbidity management: A qualitative study. Br J Gen Pract 2012;62(600):e503–10. Search PubMed
  28. Smith SM, Soubhi H, Fortin M, Hudon C, O’Dowd T. Managing patients with multimorbidity: Systematic review of interventions in primary care and community settings. BMJ 2012;345:e5205. Search PubMed
  29. Schuling J, Gebben H, Veehof LJG, Haaijer-Ruskamp FM. Deprescribing medication in very elderly patients with multimorbidity: The view of Dutch GPs. A qualitative study. BMC Fam Pract 2012;13(1):56. Search PubMed
  30. Holt S, Schmiedl S, Thürmann PA. Potentially inappropriate medications in the elderly: The PRISCUS list. Dtsch Ärztebl Int 2010;107(31–32):543–51. Search PubMed
  31. Sinnott C, Mc Hugh S, Boyce MB, Bradley CP. What to give the patient who has everything? A qualitative study of prescribing for multimorbidity in primary care. Br J Gen Pract 2015;65(632):e184–91. Search PubMed
  32. Garfinkel D, Mangin D. Feasibility study of a systematic approach for discontinuation of multiple medications in older adults: Addressing polypharmacy. Arch Intern Med 2010;170(18):1648–54. Search PubMed
  33. Mallitt KA, McNab J, Hughes R, Fernyhough J, Paterson J, O’Halloran D. Reducing emergency department presentations among chronically ill patients in Western Sydney: A key role for coordinated primary care. Aust J Prim Health 2017;23(2):140–46. Search PubMed
  34. McNab J, Paterson J, Fernyhough J, Hughes R. Role of the GP liaison nurse in a community health program to improve integration and coordination of services for the chronically ill. Aust J Prim Health 2016;22(2):123–27. Search PubMed
  35. McNab J, Gillespie JA. Bridging the chronic care gap: HealthOne Mt Druitt, Australia. Int J Integr Care 2015;15(6):e015. Search PubMed
  36. McNab J, Mallit KA, Gillespie J. Report of the evaluation of HealthOne Mount Druitt. Sydney: Menzies Centre for Health Policy, 2013. Search PubMed

CaregiversGeneral PracticeMultimorbidityPolicyQuality of life

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