A total of 52 patients (male n = 28) and 14 carers (male n = 1) were recruited. Of these, 27 patients had DM, 17 patients had COPD and 20 patients had CHF. The total number combines to more than 52 because 10 patients had two of these conditions and one patient had all three conditions. This study succeeded in recruiting patients and carers from diverse cultural and ethnic backgrounds (n = 23), including seven Indigenous patients. Most patients and carers were older than 65 years (n = 42), experienced economic hardship (n = 42), had a decade-long history of chronic illness (mean = 16.5 years) and had monthly or more frequent contact with general practitioners (GPs).
Forty-five patients had co-morbid chronic illness. The common co-morbidities included the index conditions of arthritis, osteoporosis, asthma, and back pain. Depression and pneumonia were two conditions commonly discussed by patients; most of whom at the time of the interview did not have the condition but were mindful that they were prone to recurrences.
Of the 63 health care provider (HCP) participants, most were female (n = 44) and working full time (n = 55). The majority of HCP participants were registered nurses (n = 23) and physicians (n = 21, 15 GPs and six specialists). Other participating HCPs included physiotherapists, care coordinators, managers, occupational therapists, podiatrists, psychologists and social workers. The length of HCP work experience varied from less than one year to 33 years (median = 8 years). There were 12 HCP participants who listed their role in chronic disease management as "non-clinical work," meaning they were not involved in direct patient care, yet played a major role in the service provision for this population.
Common challenges posed by co-morbidity
Co-morbidity increased the amount of time participants spent managing their health and increased patients' dependency on others. Patients with co-morbid conditions encountered problems with the coordination between services and with polypharmacy. Patients prioritised the management of one condition over another; consequently, some health issues could be neglected or compromised. The three most common challenges to patients and carers in managing chronic illness (either caused or made worse by co-morbidity), relate to acting on risk factors, recognising signs and symptoms of illness and managing medications. Table indicates key issues that patients and carers discussed in connection with co-morbidity.
Patient and carer perspectives on challenges associated with co-morbidity
Capacity to act on risk factors
Risk factors are variables known to increase a person's risk of illness or deterioration in health; the term 'risk factor' was used by HCPs but not by patients and carers. Common risk factors that patients and carers discussed included physical inactivity, poor diet, stress, smoking and excessive alcohol consumption. While patients and their carers indicated an awareness that changing their lifestyle would prevent further deterioration, co-morbidity frequently prevented them from acting on risk factors effectively--raising feelings of guilt, frustration, depression and anxiety.
Many patients found it difficult to maintain a healthy diet (a topic raised especially by patients who had both DM and CHF). Clinical depression was a common co-morbid condition that reduced patient motivation to follow a healthy diet or exercise. For some patients co-morbid conditions such as arthritis delayed completion of rehabilitation programs or caused them to withdraw from the program:
There were people older than me [in the cardiac rehabilitation program] and I couldn't keep up with them because of my ankle. That's how I went to the doctor and I showed them and I got arthritis. That was why I couldn't walk properly. ...I got an exercise bike. I look at it a lot, that bloody bike. Bit slack.
Man in his sixties with DM and CHF
Similarly, HCPs reported that co-morbid conditions, in particular arthritis and depression, could limit usefulness of rehabilitation programs for patients' index chronic conditions. Premature withdrawal of patients from rehabilitation programs due to co-morbid conditions was costly, as was extended participation in programs, which was perceived as creating further resource constraints in a system already under considerable strain:
So we can either treat the ones that we do very well and neglect all the ones who are trying to get in who also need it, or we ditch them before they've done their best work to try and get more in. You can't win either way. So that's again a lack of resources and availability.
HCP in the ACT
This perception of resource restraints explained why HCPs deterred people with multiple conditions from staying in rehabilitation programs.
Capacity to recognise the signs and symptoms of illness
Co-morbidity made it difficult for patients to recognise signs and symptoms of the index condition, especially early warnings of an exacerbation. This concern was raised more frequently by patients with CHF than by patients with DM or COPD. A woman in her seventies with DM, asthma and CHF said: "It is very hard for me to say whether it is my heart that I am short of breath with or asthma." Learning about the features of both their index condition and co-morbid conditions took much longer than simply learning about the features of a single condition. A carer explained that with her mother's recent diagnosis of DM they remained unsure whether her mother's mini-strokes were symptoms of DM or indicating a separate condition:
We don't know actually [what caused the mini-strokes]. Well, she did have a couple of episodes, I don't know if they would have been the mini-strokes, if they would have been diabetes or what it would have been. But of course ...she was only diagnosed recently [with DM].
Daughter carer in her fifties of a woman with DM
Patients indicated they learnt how to recognise signs and symptoms of exacerbation by applying information gained through various sources (written sources, conversations with health professionals, friends and family) to their personal experience in a process of trial and error. A wife carer of a man with DM and Alzheimer's disease learnt over time to differentiate between the signs and symptoms associated with each illness:
Sometimes he'd get a little bit tired and in a second he'd fell and hit his head. He would slur his words and things like that but I knew he had the symptoms of no sugar. ...Over time, you just realise that this is what's going on.
Wife carer in her seventies of a man with DM
Patients said they wanted more information that addresses the links between co-morbid conditions to facilitate their self-management.
Health care professionals reiterated the difficulty for patients in recognising signs and symptoms of co-morbid conditions, noting that this is a particular problem for patients with limited health knowledge. HCPs further explained that even when patients did correctly identify new symptoms they did not always know how to respond and so ended up in hospital or suffered unnecessarily at home.
Capacity to manage medications
Four out of five patients had co-morbid conditions. A total of 38 patients received treatment with medication for at least one of their conditions and 20 patients were prescribed seven or more medications, each with their own daily regimen. Patients found managing medication for their numerous conditions to be complicated, time-consuming, inconvenient and confusing. They raised concerns of insufficient knowledge about drug interactions and side-effects, and not being able to manage their medications. Others did not follow medication recommendations because they did not like taking pills. For example, a woman with DM and CHF did not take her prescribed medication for DM management because she did not want to increase the number of pills she was already taking (for management of CHF): "I'm on so many heart tablets and things like that, I didn't want to take any [more] medication, so I went for diet, and diet control." This is also an example of the patient prioritising treatment of one condition over another.
Many patients demonstrated limited knowledge and understanding of their medications and were unable to differentiate between them. A carer in her fifties of a woman with DM said: "I have to do the medicines these days. ...I kept noticing she didn't know what to call the tablets and stuff and now she's got over 20 tablets [daily]." Similarly, a farmer with DM and COPD said: "Well I'm not too sure what they're for but I know they're either for diabetes or for me heart, or cholesterol, or high blood pressure." While blister packs preloaded with medication were often perceived as helpful in managing medications, some people with the packs found they no longer knew what medication they were taking and could not distinguish between medications. Cognitive impairment or dementia further impaired their ability to manage, and in many cases their carers had taken over that task.
Patients discussed the complex process of finding suitable medications to manage their conditions, noting that often this required good communication with health care professionals, which in turn was dependent on patient awareness of signs and symptoms associated with their numerous conditions. HCPs raised other critical elements influencing medication compliance such as patient honesty or recall/forgetfulness about which medications they were actually taking. HCPs indicated financial constraints and the cost of filling scripts often caused patients with co-morbid conditions to skip medications they thought were less important than others. One HCP said:
They tend to pick and choose which... scripts they get filled, because they've got so many things going on at once... And the whole issue of medication management arises and it escalates their co-morbidity.
HCP in the ACT
Several health care professionals indicated that medication management and non-compliance were particular problems with patients with mental illness. They suggested that better access to mental health care providers could improve medication management for these patients. HCPs also suggested that lack of awareness by HCPs and patients concerning risks involved in using multiple medication brand names could lead to patients unknowingly taking doses higher than prescribed, resulting in ill health, and that this could go unnoticed. Patients, carers and HCPs suggested that the capacity to manage medication could be improved through increased education, patient engagement and good communication between patients and their HCPs.