Burden of disease, symptoms and self-rated health among frail elderly people

Master thesis in Medicine Bodil Ternrud Supervisor; Katarina Wilhelmson Institute of Neuroscience and Physiology Sahlgrenska Academy

Programme in Medicine Gothenburg, Sweden 2015

TITLE: BURDEN OF DISEASE, SYMPTOMS AND SELF-RATED HEALTH AMONG FRAIL ELDERLY PEOPLE

Table of Contents: ABSTRACT…………………………………………………………………………...4 1. INTRODUCTION…………………………………………………………….5 1.1 Frailty……………………………………………………………………...6 1.2 Disease burden, symptoms and self-rated health……………………….8 1.3 The intervention study…………………………………………………...11 2. AIM……………………………………………………………………………13 2.1 Research questions……………………………………………………….13 3. MATERIALS AND METHOD……………………………………………...13 3.1 Study population …………………………………………………………14 3.2 Collection and analyze of data…………………………………………...14 4. ETHICS……………………………………………………………………….15 5. DATA COLLECTION PROCEDURES……………………………………16 5.1 Measurements of frailty indicators……………………………………...16 5.2 Cumulative illness rating scale for geriatrics (CIRS-G)……………….18 5.3 The Göteborg Quality of Life Instrument (GQL-Instrument)………...18 5.4 Self-rated health (SRH)…………………………………………………..19 6. RESULTS……………………………………………………………………..19 6.1 Enrollment………………………………………………………………...19 6.2 Baseline characteristics…………………………………………………..20

2

6.3 Burden of disease according to CIRS-G………………………………...22 6.4 Burden of disease and frailty…………………………………………….23 6.5 Burden of symptoms according to the GQL-instrument……...……….25 6.6 Frailty and burden of symptoms………………………………………...29 6.7 Self-rated health and frailty…………………………………….………..31 6.8 Burden of disease as severe chronic illness, number of symptoms and self-rated health………………………………………………………….32 7. DISCUSSION WITH CONCLUSIONS AND IMPLICATIONS………....35 7.1 Methodological considerations…………………………………………..35 7.2 Discussion of results……………………………………………………....36 7.3 Conclusions and implications………………………………...…………..40 8. POPULÄRVETENSKAPLIG SAMMANFATTNING PÅ SVENSKA…...42 9. ACKNOWLEDGEMENTS…………………………………………………..43 10. REFERENCES……………………………………………………………….44 APPENDIX…………………………..……………………………………………46

3

ABSTRACT Title: BURDEN OF DISEASE, SYMPTOMS AND SELF-RATED HEALTH AMONG FRAIL ELDERLY PEOPLE Master thesis, programme in Medicine by Bodil Ternrud. Department of health and rehabilitation, Institute of Neuroscience and Physiology at Sahlgrenska Academy, University of Gothenburg, Sweden 2016. Background: Previous geriatric research has identified frail elderly people as especially vulnerable to diseases, functional loss and at great risk of losing ability in everyday activities. The frailty syndrome is linked to age-associated decline in physiological reserves and function across multi-organ systems. Continuity in care and social support has been beneficial for this group regarding ADL-function, life satisfaction and self-rated health. However, these frail elderly people are frequently patients at emergency wards and often in need of longer periods of hospital care. Unfortunately, it is confirmed that older people are more likely to receive inadequate care then other groups of patients. Aims: This study investigates the amount and character of illness, morbidity and symptoms among frail elderly people and aims to understand their special needs. Methods: A study population of 161 elderly people living at home were recruited at the emergency department of Mölndal hospital. Inclusion criteria were age 80 and older or 65 to 79 with at least one chronic disease, and dependent in at least one activity of daily living. Data was collected regarding several variables; Measurements of frailty indicators, illness according to the Cumulative illness rating scale for geriatrics (CIRS-G), symptoms according to The Göteborg Quality of Life Instrument and Self-rated health.

4

Results: This defined group of frail elderly people were all chronically ill, and a majority (68.4%) were also affected by severe chronic illness, according to CIRS-G. They had multiple diseases and a high amount of symptoms according to the GQL-instrument. Pain in some form were the most common symptom (88.8%) in the total group of participants. The frail persons had lower Self-rated health compared to the not frail elderly people. Comparing the different methods of measuring disease-burden showed a correlation of results. Conclusions: Frail elderly people are vulnerable and at great risk of functional loss. They benefit from a multi-professional team approach to care and management, including social support. This project shows that frail elderly people are affected by multiple, chronic and severe diseases. They have a high burden of symptoms and low self-rated health. This indicates that frail elderly people have special needs that require qualified medical attention, including appropriate clinical assessment, treatment and follow up. Key words: Frailty, frail elderly people, burden of disease, morbidity, symptoms.

1. INTRODUCTION “Population ageing” is a current phenomenon that draws attention all over the world. The median life expectancy is now rising also in countries less developed [1, 2]. In fact, for the entirety of recorded human history, the global population has never been as old as now [1]. Consequently this aging population can live with several chronic diseases for decades [3]. This implies some of the largest health care challenges of the century, which will affect both the socioeconomics and the health care system of all countries [2, 4]. In Sweden we are facing a clear change in population structure with an increasing life expectancy and prospected further increasing number

5

of old persons. The future challenges for our health care system depends largely on the health situation and functional status of this population group [5]. Older people often suffer from a combination of multiple, chronic diseases and social problems, which requires a team approach to diagnosis and management. Advances in the discipline of geriatric medicine have provided the prerequisite for appropriate clinical assessment, care and follow-up of older people. Despite this, there remain multiple discontinuities within systems of geriatric care that interferes with the efficient, humane, and even logical care of older patients. This make them more probable to receive inadequate care then other groups of patients [6].

1.1 Frailty On the basis of previous geriatric research, a group of elderly has been identified as especially vulnerable to diseases, functional loss and at great risk of losing ability in everyday activities. Clinical practitioners meet them as patients reassigning to emergency wards and often in need of longer periods of hospital care. These elderly patients seem to be a group in great risk of declining health and becoming dependent in activity of daily living [7].

The concepts “frail elderly” and “frailty” have gradually been established by the profession and is now frequently publicized in international geriatric research, though there is still some disagreement about the correct definition. Most studies define frailty as a condition with ageassociated declines in physiologic reserve and function across multiorgan systems, leading to increased vulnerability of adverse health outcomes, morbidity and functional loss [7, 8]. A review made by co-working Chinese-American authors shows major international efforts to reach consensus of a single operational definition or simple assessment tool of frailty. This

6

review concludes that frailty 1) is a clinical syndrome, 2) indicates increased vulnerability to stressors, leading to functional impairment and adverse health outcomes, 3) might be reversible or attenuated by interventions, and 4) is useful in primary care [7].

Two major frailty models have been described in the literature. The frailty phenotype (FP) defines frailty as a distinct clinical syndrome meeting three or more out of five phenotypic criteria: weakness, slowness, low level of physical activity, self-reported exhaustion, and unintentional weight loss. The frailty index (FI) defines frailty as cumulative deficits identified in a comprehensive geriatric assessment. The index measures the accumulated number of deficits, including diseases, physical and cognitive impairments, psychosocial risk factors, and common geriatric syndromes other than frailty [7]. The American Geriatric Society has recommended operational criteria to define physical frailty based on impairment in the physiological domains most frequently cited in the frailty literature. These include mobility, balance, muscle strength, motor processing, cognition, nutrition (often operationalized as nutritional status or weight change), endurance (including feelings of fatigue and exhaustion), and physical activity. Threshold to be considered as frail is often that the person fulfills three or more of these criteria [8, 9]. Physical frailty is an abnormal physiological state that can range from mild to severe stages. The frailty syndrome can be either detected clinically and not yet associated with disability, or clinically overt with clear manifestations of functional loss [9]. Frailty is also strongly connected to presence of multiple diseases, often defined as two or more chronic diseases [8]. Frail elderly people are at high risk of developing chronic disease, multimorbidity and functional impairments, which often result in dependence in daily activities [9, 10].

7

Etiology of the frailty syndrome includes genetic/epigenetic and metabolic factors, environmental and lifestyle stressors, and acute and chronic diseases. This is linked to multisystem pathophysiologic dysregulations, leading to a loss of dynamic homeostasis and decreased physiologic reserve. Chronic inflammation and immune activation is suggested to be a key underlying mechanism, when also targeting musculoskeletal and endocrine systems [7].

Exercise and comprehensive geriatric interdisciplinary assessment and treatment are the key interventions for the frailty syndrome at the present time. Given the complex nature of this geriatric syndrome, any single agent or approach targeted to one single organ system may not achieve optimal results. Multimodality strategies intervening in potential biological, sociobehavioral, and environmental factors are mainly considered for the frail elderly [7].

1.2 Disease burden, symptoms and self-rated health When studying chronic disease states in frail elderly patients, it is essential to consider comorbidity using standard validated indexes in order to get a comprehensive assessment of the patient's situation and avoid neglecting diseases and handicaps. The Cumulative Illness Rating Scale (CIRS), the Charlson index, the Kaplan-Feinstein index and the ICED have all been validated and applied to old patients. However, the Charlson index was found to be limited in recording the entirety of the old patients’ pathologies, and in patients with cognitive deficits, only CIRS appeared to be sufficiently trustworthy because it allows a comprehensive recording of all the comorbid diseases from clinical examination and medical file data. CIRS is according to comparative studies a good predictor of mortality and hospitalization [11].

8

The Cumulative Illness Rating Scale for Geriatrics (CIRS-G) is a modified version of the CIRS developed to measure the chronic medical illness burden in geriatric assessment [12, 13]. The CIRS-G reflects common problems of the elderly, using specific examples. Morbidity or limitation in function is emphasized as the key concept in the description of categories, as opposed to attempting to rate life-threatening potential [14].

Symptoms are the patient’s subjective perception of disease manifestations. Therefore, the identification and alleviation of symptoms are essential aspects of chronic disease management [15]. Most prior studies of symptoms in persons with advanced diseases are focused on a single symptom attributed to a single disease or diseased site. Not so much is known about the total burden of symptoms in persons with various advanced chronic diseases. Clinical management could be improved by understanding the range and frequency of symptoms experienced by these individuals [15].

An American cross-sectional study was designed to explore symptoms in a group of communitydwelling persons, 60 years or older, with advanced chronic obstructive pulmonary disease (COPD), cancer, or congestive heart failure [15]. During home interviews, the participants themselves rated symptoms experienced in the prior 24 hours. The Edmonton Symptom Assessment System were used rating the severity of ten symptoms on a 4-point scale (not present, mild, moderate, and severe). Most persons experienced multiple symptoms. The prevalence of moderate or severe symptoms was high across diagnoses although participants with COPD reported the greatest number of symptoms. At least one symptom rated as moderate or severe were experienced by 86% of the participants, and 69% experienced 2 or more

9

symptoms. The most reported symptoms were limited activity (61%), fatigue (47%), and physical discomfort (38%) [15].

The Göteborg Quality of Life Instrument (GQL-instrument) is a self-estimate tool known to give reliable and stable measurements of symptoms [16]. It was originally designed in 1990 for a study of men born in 1913 and 1923 and validated to show stable well-being variables over time on a population basis. The GQL-instrument has been proved a reliable tool in assessment of well-being and symptoms and is useful both for description of a population, as a help in evaluating treatment, and it also has predictive power [16].

The holistic definition of health refers to a multidimensional state and not merely absence of disease, as in the well-known definition employed by WHO [17] . Self-rated health (SRH) has been found to measure health as a holistic concept, using a quantitative instrument [18]. The determinants of SRH corresponds well to physical and mental health. SRH has also been shown to predict mortality and further morbidity [18, 19]. The SF-36 is adapted from longer instruments initially constructed to survey health status in the Medical Outcomes Study (MOS). SF-36 was designed for measuring self-rated health in clinical practice and research, health policy evaluations, and general population surveys [20]. SF-36 has proven to be sensitive to within-person changes in health (declining health) in general populations [21] and has been validated for use in Sweden in three subsequent studies [22-24].

10

1.3 The intervention study The discovery of effective interventions to prevent or delay disability in older persons is a public health priority. Research in the subgroup of frail elderly is essential to improve their health outcomes [9]. A Swedish review has looked into original articles describing randomized controlled trials on integrated and coordinated interventions targeting frail elderly people living in the community, their outcome measurements and their effects on the client, the caregiver and healthcare utilization, published in refereed journals between 1997 and July 2007 [25]. These articles provide some evidence that integrated and coordinated care is beneficial for the population of frail elderly people and reduces health care utilization. However, the authors states that the review shows heterogeneous results, depending on the variety of study outcomes and measurements. The frail elderly people are a heterogeneous group; they have different impairments and a variety of co-morbidities. Focusing on the benefits for the client, the outcome showing most positive results was medication use. The most tested outcome area was the effect of intervention on ADL. Focusing on the benefits for healthcare utilization, the number of days spent in hospital was the outcome showing the most positive results in favour of interventions [25]. The review pinpoints the importance of using valid outcome measurements and describing both the content and implementation of the intervention. The authors suggests implications for future research with further intervention studies targeting integrated and coordinated care for frail elderly people in order to strengthen the evidence [25]. The review referred to above was part of initiating the research program “Support for frail elderly persons – from prevention to palliation”, supported by The Vårdal Institute, The Swedish Institute for Health Sciences. This program also includes the intervention study “Continuum of care for frail elderly people, from the emergency ward to living at home”[10]. The intervention

11

was designed to create an integrated continuum of care from the hospital emergency department through the hospital and back to the older person’s own home. The basic hypothesis was that the intervention would reduce the number of admittances to the emergency ward and institutional care, and increase satisfaction of life in the intervention-group compared to the control-group. But also to evaluate the effects of the intervention on functional ability in terms of activities of daily living (ADL). The intervention has been evaluated after 3 and 6 months, and 1 year after baseline [10, 26, 27].

The intervention included assessment by a geriatric nurse, case management, interprofessional collaboration, support for relatives and organizing of care-planning meetings in older persons’ own homes [26, 27] Results from evaluations has not shown any significant differences between intervention- and control group with regards to change in frailty at any follow-up. At both the three- and twelve-month follow-ups the intervention group had doubled their odds for improved ADL independence compared to the control. Conclusion was made that the intervention had the potential to reduce dependency in ADLs, a valuable benefit both for the individual and for society [26]. Another described impact of the continuum of care intervention was a positive effect on life satisfaction of the participants. The results refers to satisfaction with functional capacity, psychological health and financial situation [27]. Previous results from the project has also shown that the intervention had positive effects on frail elders self-rated health and experiences of symptoms (GQL-sum variable) [28].

Concluding the situation described in the background, there is a group of chronically ill and especially vulnerable elderly people, in need of a multidimensional and comprehensive

12

assessment and care. Interventions aiming to give a continuity in care and social support is beneficial for this group regarding ADL-function, life satisfaction and self-rated health, but has not given any significant results regarding the complete frailty-syndrome. This motivates the search for further knowledge about elderly people and the frailty syndrome, regarding the amount and details of illness, morbidity and symptoms in this group

2. AIM The aim of this study was to describe the disease-burden, symptoms and self-rated health among frail elderly people.

2.1 Research questions A defined group of frail elderly people were investigated concerning the following questions: - What were their amount of disease-burden, according to the results from CIRS-G? - What was the total burden of symptoms in this group, according to the results of the GQLinstrument, and how were these symptoms distributed? - How did this group estimate their degree of Self-rated health? - Was there any associations between frailty, burden of disease, symptoms and self-rated health?

3. MATERIALS AND METHODS This study has a descriptive analytical design. It is based on data collected during the project ”A continuum of care for frail elderly people”, which is a randomized controlled trial performed in the municipality of Mölndal, Sweden. [10]

13

3.1 Study population 161 elderly people living at home were recruited when seeking care at the emergency department at Mölndal hospital in a period ranging from October 2008 to June 2010. Inclusion criteria were age 80 and older or 65 to 79 with at least one chronic disease and dependent in at least one activity of daily living. Patients excluded were the ones with acute severe illness, in immediate need of assessment and treatment by a physician (within ten minutes), patients with diagnosed dementia or severe cognitive impairment, and patients in palliative phase. The patients were randomized to either the intervention or control group. At baseline 76 persons were assigned to the control group and 85 to the intervention group. Since this study does not aim to explore the effect of interventions, the results from both intervention- and control groups have been analyzed without distinction. Thus the total study population consists of 161 persons at baseline. Some results from the total study group at 6 and 12 months follow-ups have been analyzed merely to investigate change over time, but not the impact of the intervention.

3.2 Collection and analyze of data Collection of data regarding several variables was performed using both validated measurements and questionnaires. Structured interviews were performed in the patients homes within a week after the discharge (=baseline). Follow-ups were made in all groups at 3 and 6 months and one year after baseline.[10, 26] Following methods were used for collection of data for this study: - Measurements of frailty indicators - Illness according to the Cumulative illness rating scale for geriatrics (CIRS-G) - Symptoms according to The Göteborg Quality of Life Instrument (GQL-instrument)

14

- Self-rated health according to one question from SF-36 Statistical analysis performed using Chi-square test in cases with expected count over 5, and when expected count less than 5 has Fisher´s exact test been used. Results were considered significant when p-value