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Symptom burden among people with chronic disease
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
2015 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Introduction: Chronic diseases tend to increase with old age. Older people with chronic disease are commonly suffering from conditions which produce a multiplicity of symptoms and a decreased health-related quality of life. Nurses have a responsibility to prevent, ease or delay a negative outcome through symptom management, or assist in achieving an acceptable level of symptom relief.

Aim: The overall aim of the thesis was to describe different aspects of symptom burden from the perspective of community-dwelling people with chronic disease.

Methods: This thesis is based upon four papers that used both quantitative and qualitative data to describe different aspects of symptom burden, experienced by people with chronic diseases. Paper (I) is a cross-sectional study with 91 participants diagnosed with chronic obstructive pulmonary disease. Papers (II and IV) are based upon secondary outcome data from a randomized controlled trial with 382 community-dwelling older people with multimorbidity. Paper (II) is a cross-sectional study and Paper (IV) has a descriptive and an explorative design reporting on the trajectory of symptom prevalence and symptom burden. Paper (III) is a qualitative study with participants from the AGe-FIT.

Results: Among people diagnosed with COPD the most prevalent symptoms with the highest symptom burden scores were shortness of breath, dry mouth, cough, sleep problems, and lack of energy, with just a few differences between participants with moderate and severe airflow limitation (I). For older people with multimorbidity, pain was the symptom with the highest prevalence and burden. Other highly prevalent symptoms were lack of energy and a dry mouth. Poor vision, likelihood of depression, and diagnoses of the digestive system were independently related to the total symptom burden score (II). The symptoms experienced by the older people were persistent and the symptom burden remained high over time (IV). The experience of living with a high symptom burden was described as an endless struggle. The analysis revealed an overall theme, “To adjust and endure” and three sub-themes, “to feel inadequate and limited”, “to feel dependent”, and “to feel dejected” (III).

Conclusions: The results of this thesis indicate the importance of early symptom identification. People with chronic diseases have an unmet need for optimized treatment that focuses on the total symptom burden, and not only disease specific symptoms. A large proportion of older people with multimorbidity suffer a high and persistent symptom burden, and the prevalence and trajectory of pain are high. Older people sometimes think their high age is the reason they experience a diversity of symptoms, and they do not always communicate these to their health-care provider.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2015. , 97 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1484
Keyword [en]
Symptom experience, Symptom burden, Chronic disease, Community-dwelling
National Category
Gerontology, specializing in Medical and Health Sciences Nursing Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
URN: urn:nbn:se:liu:diva-122742DOI: 10.3384/diss.diva-122742ISBN: 978-91-7685-939-1 (print)OAI: oai:DiVA.org:liu-122742DiVA: diva2:872533
Public defence
2015-12-18, K3, Kåkenhus, Campus Norrköping, Norrköping, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2015-11-19 Created: 2015-11-19 Last updated: 2015-11-20Bibliographically approved
List of papers
1. Symptom burden in stable COPD patients with moderate or severe airflow limitation
Open this publication in new window or tab >>Symptom burden in stable COPD patients with moderate or severe airflow limitation
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2014 (English)In: Heart & Lung, ISSN 0147-9563, E-ISSN 1527-3288, Vol. 43, no 4, 351-357 p.Article in journal (Refereed) Published
Abstract [en]

OBJECTIVES:

To describe a multidimensional symptom profile in patients with stable chronic obstructive pulmonary disease (COPD) and determine whether symptom experience differed between patients with moderate or severe airflow limitations.

BACKGROUND:

Patients with severe airflow limitation experience numerous symptoms, but little is known regarding patients with moderate airflow limitation.

METHODS:

A multidimensional symptom profile (Memorial Symptom Assessment Scale) was assessed in 42 outpatients with moderate and 49 with severe airflow limitations.

RESULTS:

The mean number of symptoms in the total sample was 7.9 (±4.3) with no difference between patients with moderate and severe airflow limitations. The most prevalent symptoms with the highest MSAS symptom burden scores were shortness of breath, dry mouth, cough, sleep problems, and lack of energy in both groups.

CONCLUSIONS:

Patients with moderate or severe airflow limitations experience multiple symptoms with high severity and distress. An assessment of their multidimensional symptom profile might contribute to better symptom management.

Place, publisher, year, edition, pages
Elsevier, 2014
Keyword
Chronic obstructive pulmonary disease; Symptom assessment; Symptom experience; Respiratory nursing
National Category
Clinical Medicine
Identifiers
urn:nbn:se:liu:diva-109384 (URN)10.1016/j.hrtlng.2014.04.004 (DOI)000338972500022 ()24856227 (PubMedID)
Available from: 2014-08-15 Created: 2014-08-15 Last updated: 2017-12-05Bibliographically approved
2. Symptom burden in community-dwelling older people with multimorbidity: a cross-sectional study
Open this publication in new window or tab >>Symptom burden in community-dwelling older people with multimorbidity: a cross-sectional study
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2015 (English)In: BMC Geriatrics, ISSN 1471-2318, E-ISSN 1471-2318, Vol. 15, no 1Article in journal (Refereed) Published
Abstract [en]

Background: Globally, the population is ageing and lives with several chronic diseases for decades. A high symptom burden is associated with a high use of healthcare, admissions to nursing homes, and reduced quality of life. The aims of this study were to describe the multidimensional symptom profile and symptom burden in community-dwelling older people with multimorbidity, and to describe factors related to symptom burden. Methods: A cross-sectional study including 378 community-dwelling people greater than= 75 years, who had been hospitalized greater than= 3 times during the previous year, had greater than= 3 diagnoses in their medical records. The Memorial Symptom Assessment Scale was used to assess the prevalence, frequency, severity, distress and symptom burden of 31 symptoms. A multiple linear regression was performed to identify factors related to total symptom burden. Results: The mean number of symptoms per participant was 8.5 (4.6), and the mean total symptom burden score was 0.62 (0.41). Pain was the symptom with the highest prevalence, frequency, severity and distress. Half of the study group reported the prevalence of lack of energy and a dry mouth. Poor vision, likelihood of depression, and diagnoses of the digestive system were independently related to the total symptom burden score. Conclusion: The older community-dwelling people with multimorbidity in this study suffered from a high symptom burden with a high prevalence of pain. Persons with poor vision, likelihood of depression, and diseases of the digestive system are at risk of a higher total symptom burden and might need age-specific standardized guidelines for appropriate management.

Place, publisher, year, edition, pages
BioMed Central, 2015
Keyword
Chronic disease; Older people; Symptom assessment
National Category
Sociology Clinical Medicine
Identifiers
urn:nbn:se:liu:diva-114010 (URN)10.1186/1471-2318-15-1 (DOI)000347569800001 ()25559550 (PubMedID)
Note

Funding Agencies|Faculty of Health sciences, Linkoping University; county council of Ostergotland; Signe and Olof Wallenius trust fund; Solstickan; Swedish Association of Geriatric Medicine; Mundipharma

Available from: 2015-02-06 Created: 2015-02-05 Last updated: 2017-12-04
3. To adjust and endure: a qualitative study of symptom burden in older people with multimorbidity
Open this publication in new window or tab >>To adjust and endure: a qualitative study of symptom burden in older people with multimorbidity
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2015 (English)In: Applied Nursing Research, ISSN 0897-1897, E-ISSN 1532-8201, Vol. 28, no 4, 322-327 p.Article in journal (Refereed) Published
Abstract [en]

Context Older people with multimorbidity are vulnerable and often suffer from conditions that produce a multiplicity of symptoms and a reduced health-related quality of life. Objectives The aim of this study is to explore the experience of living with a high symptom burden from the perspective of older community-dwelling people with multi-morbidity.

Method A qualitative descriptive design with semi-structured interviews, including 20 community-dwelling older people with multi-morbidity and a high symptom burden. The participants were 79-€“89 years old with a mean of 12 symptoms per person. Data were analyzed using content analyses.

Results The experience of living with a high symptom burden revealed the overall theme, “To adjust and endure” and three sub-themes. The first sub-theme was "To feel inadequate and limited". Participants reported that they no longer had the capacity or the ability to manage, and they felt limited and isolated from friends or family. The second sub-theme was "To feel dependent". This was a new and inconvenient experience; the burden they put on others caused a feeling of guilt. The final sub-theme was "To feel dejected". The strength to manage and control their conditions was gone; the only thing left to do was to sit or lie down and wait for it all to pass.

Conclusion This study highlights the importance of a holistic approach when taking care of older people with multi-morbidity. This approach should employ a broad symptom assessment to reveal diseases and conditions that are possible to treat or improve.

Place, publisher, year, edition, pages
Elsevier, 2015
Keyword
Multimorbidity, Older people, Symptom burden, Content analysis
National Category
Nursing Gerontology, specializing in Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-122740 (URN)10.1016/j.apnr.2015.03.008 (DOI)000366148700012 ()
Available from: 2015-11-19 Created: 2015-11-19 Last updated: 2017-12-01Bibliographically approved
4. Symptom trajectory and symptom burden in older people with multimorbidity, secondary outcome from the RCT AGe-FIT study
Open this publication in new window or tab >>Symptom trajectory and symptom burden in older people with multimorbidity, secondary outcome from the RCT AGe-FIT study
2016 (English)In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 72, no 11, 2773-2783 p.Article in journal (Refereed) Published
Abstract [en]

Aim

The aim of this study was to follow the symptom trajectory of community-dwelling older people with multimorbidity and to explore the effect on symptom burden from an ambulatory geriatric care unit, based on comprehensive geriatric assessment.

Background

Older community-dwelling people with multimorbidity suffer from a high symptom burden with a wide range of co-occurring symptoms often resulting to decreased health-related quality of life. There is a need to move from a single-disease model and address the complexity of older people living with multimorbidity.

Design

Secondary outcome data from the randomized controlled Ambulatory Geriatric Assessment Frailty Intervention Trial (AGe-FIT).

Methods

Symptom trajectory of 31 symptoms was assessed with the Memorial Symptom Assessment Scale. Data from 247 participants were assessments at baseline, 12 and 24 months, 2011–2013. Participants in the intervention group received care from an ambulatory geriatric care unit based on comprehensive geriatric assessment in addition to usual care.

Results

Symptom prevalence and symptom burden were high and stayed high over time. Pain was the symptom with the highest prevalence and burden. Over the 2-year period 68–81% of the participants reported pain. Other highly prevalent and persistent symptoms were dry mouth, lack of energy and numbness/tingling in the hands/feet, affecting 38–59% of participants. No differences were found between the intervention and control group regarding prevalence, burden or trajectory of symptoms.

Conclusions

Older community-dwelling people with multimorbidity had a persistent high burden of symptoms. Receiving advanced interdisciplinary care at an ambulatory geriatric unit did not significantly reduce the prevalence or the burden of symptoms.

Place, publisher, year, edition, pages
Wiley-Blackwell Publishing Inc., 2016
Keyword
Registration clinicaltrials.gov identifier: NCT01446757 Keywords Symptom management, Community Care, Older people, Quality of care
National Category
Nursing Gerontology, specializing in Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-122741 (URN)10.1111/jan.13032 (DOI)000386079500019 ()27222059 (PubMedID)
Note

At the time for thesis presentation publication was in status: Manuscript

At the time for thesis presentation publication was named: Symptom trajectory and symptom burden in older people with multimorbidity, data from the RCT AGe-FIT study

Available from: 2015-11-19 Created: 2015-11-19 Last updated: 2017-04-21Bibliographically approved

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Eckerblad, Jeanette

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