Symptom burden in community-dwelling older people with multimorbidity: a cross-sectional study

Chronic conditions among older people represent some of the largest health care challenges of this century, and one which will affect both the socioeconomics and the health care system[1]. Globally, the population is ageing and people can now live with several chronic diseases for decades[2]. Chronic diseases tend to increase with old age. An international systematic review reported that approximately 62% of all the people aged between 65–74 years, and 81.5% of people above 85 years suffer from multiple chronic diseases[3]. A co-occurrence of ≥2 diseases, where at least one is chronic, is defined as multimorbidity[4]. Multimorbidity is a condition with a high impact on functional impairment and quality of life[5, 6], and is a condition that often results in a variety of different symptoms[7].

In a number of studies, older people have been reported to suffer from various symptoms. These reports have been based on measurements of a single symptom such as depression[8] fatigue[9], sleep disorder[10] or pain[11]. Other studies have been based on only one symptom dimension, usually intensity or severity[12, 13]. The use of a multidimensional approach with the aforementioned dimensions is advocated both in research[14] and clinical practice[15]. A multidimensional assessment may also serve as a sufficient patient-reported outcome and it has been shown to be a sensitive tool to measure the effectiveness of interventions[16]. Symptom burden is a complex concept that goes beyond the scoring of any symptom instrument. To persons suffering from an advanced disease the impact of symptoms is often a well-known[17]. In an older population, high symptom burden is associated with increased health care utilization, frequent visits to the emergency department, hospitalization[18], admissions to nursing homes[19], and reduced quality of life[20, 21]. Symptom burden has been defined in different ways. In this study symptom burden is defined as "the subjective, quantifiable prevalence, frequency, and severity of symptoms placing a physiological burden on patients and producing multiple negative, physical, and emotional patient responses"[22].

Earlier studies within the research field of multidimensional symptoms have usually been conducted on specific chronic diseases, for example chronic obstructive pulmonary disease (COPD), heart failure (HF) or renal disease[20, 21, 23], and there is a paucity of studies focusing on multidimensional symptoms in older persons with multimorbidity. Existing guidelines for disease management are disease-specific, and they are not designed for people with multimorbidity[24]. If we set out to reduce the impact of diseases by reducing the symptom frequency, minimizing symptom severity, and relieving symptom distress it is essential to look at and assess the total symptom burden, not just one disease at the time.

The mean age of the participants was 82 (4.8) years, with an almost equal distribution of men (52%) and women (48%) (Table 1). Significant differences were found both regarding gender and age between people who agreed to participate (n = 381) and those who declined, could not be reached, had moved to nursing home, did not provide informed consent or had recently died (n = 461). People who agreed to participate were slightly younger than the non-participants 82 (4.8) vs.83 (5.4) years (p = 0.024) and more men than women accepted the invitation to participate (p = 0.039).

In total, 51% of participants lived alone and 81% had an educational level consisting of elementary school. Approximately one-third (28%) reported problems with vision, with or without glasses and (34%) reported problems with hearing, with or without hearing device. In total, 8% currently smoked and 7% drank alcohol on a daily basis. The mean score on the MMSE was 26 (3.2), and 20% of the participants had a score below 24 that could indicate cognitive dysfunction. With regard to depression we found that 32% scored equal or higher than 5 on the GDS, indicating the likelihood of depression (Table 1).

Participants in this study had three or more medical diagnoses in their medical record. Almost all participants (96%) had at least one disease listed in ICD chapter 9, diseases of the circulatory system. Participants also had diseases from ICD chapter 9 relating to the musculoskeletal system (83%), diseases of the digestive system (60%) and diseases of the eye and adnexa (58%) (Table 1).

There is a lack of knowledge concerning the multidimensional symptom profile and symptom burden in older people with multimorbidity. An important finding of this study was that older community-dwelling people with multimorbidity suffer a considerable symptom burden, with a mean of eight symptoms per person, and some people even reporting 10 symptoms. Almost seven out of ten older people suffered from pain. Pain was also the symptom with the highest frequency, severity, and distress and had the highest symptom burden score of all 31 symptoms. Three factors were found to be independently associated with total symptom burden: poor vision, likelihood of depression, and diseases of the digestive system.

Almost seven out of 10 participants in this study had experienced pain during the preceding week, which is a high number but in line with some other studies in which community-dwelling older people reported a pain prevalence of between 20 to 79%[31, 32]. As reflected by the high symptom burden, our findings show that pain causes older people a considerable amount of suffering. This group of older people living in a home had a burden of pain that was comparable to the scores of hospitalized cancer patients near the end of life[27], which was not something we had expected. Earlier studies described pain as underdiagnosed and undertreated[31, 33] and found that, irrespective of clinical diagnosis, 25% of older people do not receive analgesic treatment for pain, and people older than 85 are even less likely to receive it[33]. At the same time, polypharmacy is a huge problem within the group of older people with multimorbidity; inappropriate drug intake causes complications and symptoms, leading to repeated visits to the emergency department and hospitalization[34]. There has been a lack of age-specific standardized management guidelines for geriatric pain, and health professionals have felt that multimorbidity complicates appropriate management[35]. Just recently, new guidance for treating pain in the elderly was published[31].

In addition to pain, lack of energy, difficulty swallowing, "I don't look like myself", difficulty sleeping, problems with urination, and diarrhea had a high symptom burden in those who experienced them. These symptoms seem rather non-specific, that is, not related to one specific medical diagnosis, and are not always recognized as being important. However, earlier studies have shown that older people with a high symptom burden have a poorer quality of life and higher use of health services[18, 19]. To facilitate and improve symptom management, health care providers should not only look at and assess disease-specific symptoms but also take general symptoms into consideration.

We also found that poor vision, likelihood of depression, and diseases of the digestive system were associated with total symptom burden. It is known that people in a depressive mood experience a higher symptom burden than those who are not[36]. Earlier studies have confirmed the association between depression and pain[37]. If recognized and treated, depression is often reversible, but if left untreated, depression may result in the onset of physical, cognitive, functional, and social impairment, as well as decreased quality of life,[38] and higher mortality[39]. The independent relationship between poor vision and the total symptom burden scale has not previously been described, but other studies have reported that people with poor hearing or vision are more likely to experience disability, and that there are associations between poor vision, poor hearing and depression[40]. Earlier studies have shown that people with diseases of the digestive system have a lower health-related quality of life[41, 42] and that the severity of the gastro-intestinal symptoms and health-related quality of life are associated[41]. Reflecting on the high symptom burden in multimorbid older people, we observe that in our current health care system most care is organized from a single disease perspective, an arrangement into which older people with multimorbidity do not quite seem to fit[6]. These older people have reported feeling unwelcome or even like a burden when they need to seek care[43]. However, health care providers still have the responsibility to give patients optimal support to restore or at least achieve an acceptable level of symptom relief[44]. A routine of a broad assessment of symptoms and symptom burden (not restricted to the disease-specific burden) might lead to better symptom management[19, 45] which could maintain independence and functional ability, and sustain or improve quality of life for older people with multimorbidity.

A large proportion of the older people with multimorbidity living in the community suffer from a high symptom burden and a high prevalence of pain. These people have an unmet need for optimized treatment focusing on the assessment, management and maintenance of the total symptom burden. People with poor vision, likelihood of depression and diseases of the digestive system are at risk of facing a higher symptom burden and might need age-specific standardized guidelines for appropriate management.