Shared decision-making has been described as allowing patients to gain more control over their life situation and feel less helpless. The aim of this systematic review was to describe the involvement of older patients in shared decision-making in community settings. In accordance with the systematic review method, a total of 2468 abstracts were read, after which nine quantitative studies were included. A qualitative thematic analysis was performed and two themes emerged; increased understanding of self-management and a desire to strengthen one’s position in relationship with professionals, both of which were essential for empowering older patients to participate in shared decision-making. Older patients’ shared decision-making was seen as a struggle to maintain their autonomy in different areas of everyday life. Emotional and psychological problems made their position more difficult. In order to empower them in relationships with healthcare professionals, older patients require more knowledge (self-efficacy) and information about their illness, which could strengthen their position in the decision-making process. They also need a greater awareness of decisional conflicts that may arise. Age, gender and health status influence older patients’ chance of being respected and taken seriously in relationship with professionals.
The policy of the World Health Organization [
According to Flottorp et al. [
Healthcare professionals need a new understanding to address the problems inherent in shared decision-mak- ing for older persons [
In a review of patient involvement in shared decision-making, it was stated that interventions to increase collaborative care had a positive effect on patient satisfaction and health outcomes [
The aim of this systematic review was to describe the involvement of older patients in shared decision-making in community settings. The review question was; what do older patients need to strengthen their involvement in shared decision-making?
A systematic review method [
The studies, which were published between January 2000 and March 2015, included older adults aged 50 and over. The inclusion criteria were: Published in the English language in peer-reviewed journals and investigating the shared decision-making, participation and user involvement of elderly persons in community and/or primary care. The exclusion criteria were review studies, qualitative studies, theoretical studies, studies of younger persons, studies published before 2000, studies solely focusing on participation in research and healthcare professionals’ perceptions.
Electronic searches were performed in Academic Search Premier (440), Ovid Medline (10), PubMed (821), CINAHL (119) and ProQuest (1078) for the period January 2000-March 2015. The search words were: Shared decision-making, user participation, user involvement, elderly, older, quantitative research, community and primary care. A total of 2468 abstracts were read and 60 studies retrieved for further investigation. A manual search yielded 3 studies. The abstracts included review papers, non-empirical research and theoretical studies that did not meet the inclusion criteria. The retrieval and selection process, which resulted in a total of nine quantitative studies, is presented in
The studies comprised a broad spectrum of content, various outcome measurements and different statistical analyses across diverse time periods, making a meta-analysis impossible [
Author year, country | Aim and research questions | Sample | Method/design measurements | Analysis | Validity/reliability |
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1. Anthony (2007) USA | To identify factors that influence the self-advocacy expression of elderly African Americans. | N = 100. | Mixed method. MHLCS, PGCMS. | Descriptive statistics. | Small sample size prevents generalization |
2. Alma et al. (2012) UK | To investigate the impact of a multidisciplinary group rehabilitation programme for visually impaired elderly patients on four aspects of participation: frequency of performance, restrictions, satisfaction and autonomy outdoors. | N = 29 | Cross sectional. VIPP, USER-P, IPA. Self-report Questionnaires. | SPSS Inc., Chicago, IL, USA. Non-response analysis was performed using Student’s t-test and chi-square tests. | N = 3, drop out. Level of significance (p) was set at 0.10 because of the small sample size. The instruments were described as valid. |
3. Dewing (2006) UK | To facilitate multi-disciplinary practitioners in the practice development group to actively learn through a different form of engagement with older people outside the usual “patient” and “caregiver” roles. | N = 18 N = 12 | PCQ, SQ. | Likert scale | Small sample size. |
4. Heisler et al. (2002) USA. | To assess the influence of patients’ evaluation of their physicians’ participatory decision-making style, rating of physician communication and reported understanding of diabetes self-care and management. | N = 1314 | Cross-sectional. DQIP, PDM, PDCOM, PPDD, ABIM, TIBI. Self-report questionnaires. | Multiple regression analysis. | The result of this study cannot be generalized to younger or predominantly female populations. The design was necessary to detect the causal relations. |
5. Maly et al. (2004) USA | To identify the impact of patient age and patient-physician communication on the participation of older breast cancer patients in treatment decision-making | N = 222 | Cross-sectional. 7-point Likert scale, SIISS, ES, SPB, PEPPI. Self-report questionnaires. | Multiple logistic regression analyses. Cronbach’s alpha for the scale in this sample was 0.94. | Not a probability sample. External generalizability was limited. Recall bias was a potential confounder. |
6. Pipe et al. (2005) USA | To investigate demographics and perceptions of shared decision-making as factors contributing to patient satisfaction in older adults. | N = 611 | Longitudinal survey. Two waves of a postal questionnaire. PICS, SWD. Self-report questionnaires. | Multiple regression, descriptive and inferential statistics. Cronbach’s alpha-0.73. | Response rate 48.7%. PICS was a valid instrument. Adequate statistical power. A larger sample size would increase generalizability. The sample was homogeneous. Confounding variables could not be accounted for in this secondary analysis. |
7. Tariman et al. (2014) USA | To describe the decision-making preferences of older adults newly diagnosed with symptomatic myeloma and to explore the association between sociodemographic variables and decisional role preferences. | N = 20. | Cross-sectional. CPS. Self-report questionnaires. | *SPSS version 18. | Small sample size limits the generalizability. CPS scale was a valid tool. |
8. Thomson et al. (2007) UK | To determine the efficacy of a computerized decision aid compared to the standard use of clinical guidelines derived from the same decision analysis in patients with atrial fibrillation making a decision on whether take warfarin or aspirin therapy. | N = 109. N = 56 intervention group, N = 53 control group. | Exploratory trial | Fisher’s exact test for binary variables, x2 tests and t test. | Although one arm was discontinued, it does not affect the validity of the comparison between the remaining arms. |
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9. Wetzels et al. (2005) NETHERLANDS | To determine the effects of the program and to test the following hypotheses; Implementation of the consultation leaflet would improve patients’ evaluations of their care. Patients with underreported health problems would benefit from the intervention because they would be more likely to discuss these problems. | N = 171, intervention group, N = 144, control group. | A cluster-randomized trial from different cohorts. COMRADE, PEI, EUROPEP. | *SPSS 11.0 and SAS (8.0) software. | Further research should focus on sub-groups of older patients, in combination with face-to-face interventions that stimulate involvement. |
ABIM, The American Board of Internal Medicine. CPS, Decision Role Preferences. COMRADE, A Patient-based Outcome Measure to Evaluate the Effectiveness of Risk Communication and Treatment Decision making in Consultations. DQIP, Diabetes Quality Improvement Project. ES, Emotional Support. EUROPEP, Evaluation of General Practice Care. IPA, The Impact on Participation and Autonomy. MHLCS, The Multidimensional Health Locus of Control Scale. PCQ, Patient Centreometer Questionnaire. PEI, The Patient Enablement Index. PDCOM, PDM style, Provider Participatory Decision making Style. PEPPI, Perceived Efficacy in Patient-Physician Interactions Questionnaire. PGCMS, The Philadelphia Geriatric Center Morale Scale. PICS, Perceived Involvement in Care Scale. PPDD, Provider Participatory Decision-making Style. SIISS, A Summative Interactive Informational support Scale. SPB, surgeons’ Partnership-building Efforts. SWD, Patient Satisfaction with Decision Scale. TIBI, The total Illness Burden Index. USER-P-version 8, the Utrecht Scale for Evaluation of Rehabilitation-Participation. VIPP, Visually Impaired elderly Persons Participating. SQ, Service Questionnaire. *SPSS, Statistical Package for Social Sciences. SF-36, The Medical Outcomes Study 36-item Short Form Questionnaire.
There was no information about the design in one study [
Five studies described limitations to generalizing the findings to older adults in other settings and cultures [
The methods for analyzing a systematic review can be either statistical or qualitative, depending on the purpose and the material involved [
1st author, year | Sex | Age, mean age, response-rate | Chronic conditions, illness | Ethnicity |
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1. Anthony (2007) USA | 82 % female 18% male | Age 60 - 99 Median 79. Response rate (not reported). | Not reported. | African American 100.0% |
2. Alma et al. (2012) NETHERLANDS | 67% female 41% male | Age 57 - 88. Median 73.2 Median 70.89 90 % response rate. | Diabetes mellitus 23%. Osteoarthritis, 27%. Diseases of the respiratory system 8%.Other chronic conditions 65%. | Not reported |
3. Dewing et al. (2006) UK | Not reported | Age (not reported) Median (not reported) 64% response rate, 80% response rate. | Chronic illness, rehabilitation needs. | Not reported |
4. Heisler et al. (2002) USA | 2% female 98% male | Age 65 and older. Median 67. 66% response rate. | Diabetes mellitus | Caucasian 81% African American 12%, Latino 4% Other 3% |
5. Maly et al. (2004) USA | 100% female | Age 55 years and older. Median 66.7. 63.9% response rate (private practices), 66.1% response rate (CSP), 64.3% response rate (BCTF) | Breast cancer | Caucasian 63.5% African American 2.2% Latino 23.4% Other 0.9% |
6. Pipe et al. (2005) USA | 59% female 41% male | Age 50 and older. Median 73.3 48.7% response rate. | General health Excellent, very good, good 84.6% Fair, poor 15.4% | Caucasian 93.0%, African American 1.0% Asian 0.5%, Native American 2.0%, Other 3.0% |
7. Tariman et al. (2014) USA | 60% female 40% male | Age 60 years and older. Median 67.45. 18% response rate. | Symptomatic Myeloma | Caucasian 90% Asian 5% Native American 5% |
8. Thomson et al. (2007) UK | 44.6% of females in the intervention group.43.4% of females in the control group. 55.4% of males in the intervention group.56.6% of males in the control group. | Age 60 years and older. Median 73.7 in the intervention group, Median 73.1% in the control group. 26% response rate in the intervention group, 29% response rate in the control group. | Chronic non-valvular atrial fibrillation or paroxysmal atrial fibrillation. | Not reported. |
9. Wetzels et al. (2005) USA | 62.6% of females in the intervention group, 36.8% of males in the intervention group, 52.8% of females in the control group, 47.2% of males in the control group. | Age 70 and older. Median 75.6. 38.1% response rate in the intervention group, 43.0% response rate in the control group. | Serious chronic diseases intervention group, 48.8%, control group, 46.5%. | Not reported |
Cancer Surveillance Program (CSP); Breast Cancer Treatment Fund (BCTF).
common concepts and patterns in the data [
Themes | Increased understanding of self-management | A desire to strengthen one’s position in the relationship with professionals |
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Sub-themes | Autonomy and participation in decision-related activities | Increased knowledge (self-efficacy) about the illness |
Emotional and psychological symptoms associated with difficulty participating | The need for more information | |
Satisfaction with care and treatment | Handling decisional conflicts | |
Influence of age and gender on participation |
The results revealed two themes; increased understanding of self-management and A desire to strengthen one’s relationship with professionals, both of which were essential for empowering older patients to participate in shared decision-making.
Self-management can be interpreted as a way to empower older patients, leading to more autonomy and participation in the decision-making process. Their coping abilities will be enhanced by being more in balance with the different activities of life, enabling them to manage emotional and psychological challenges. Understanding self-management can be related to a growing satisfaction with care and treatment. One study revealed that understanding self-management was of the utmost importance [
The findings revealed an increase in autonomy in relation to different activities [
The findings revealed emotional and psychological symptoms associated with difficulty participation in decision-making [
There were different perceptions of satisfaction with care and treatment related to decision-making [
This theme is interpreted as the desire to strengthen relationships with professionals in order to empower the older person in the decision-making process. Older patients often reported a need for more knowledge and information about their chronic condition. Tariman et al. [
The findings revealed the need for more knowledge about the illness or disease [
The findings revealed different explanations of how information influenced decision-making [
The findings explained that while decisional conflict was reduced in both groups post-clinic compared to pre- clinic, the difference between the groups post-clinic was significant [
The findings revealed that age and gender/sex influenced the perception of participation in decision-making [
The aim of this systematic review was to describe older persons’ role in shared decision-making. Two themes emerged from the thematic analysis; Increased understanding of self-management and A desire to strengthen one’s position in the relationships with professionals. The first theme demonstrated that older persons’ shared decision-making could be seen as strengthening their autonomy in different areas of everyday life. However, older persons who were struggling with emotional and psychological symptoms and problems had less were less involved in the decision-making process. The second theme revealed a need to strengthen the relationships with professionals. Older persons require more knowledge (self-efficacy) and information about their illness in order to strengthen their position. They also need to be more aware of decisional conflicts that can arise. Age, gender and health influence older persons’ ability to be respected and taken seriously in the relationship with professionals. Managing one’s own illness is complicated and can be difficult to maintain. Professionals are often frustrated by their inability to improve patients’ possibility to increase understanding of self-management and restricted by the limited time available in the outpatient setting. Various chronic illness programs have included a focus on patient self-management [
Self-management can be seen as designed to promote patient autonomy and participation in decision-related activities that can contribute to positive health outcomes. Research on shared decision-making often conceptualizes healthcare professionals and patients as autonomous, rational actors [
Older persons demonstrated a desire to strengthen one’s position in relationship with professionals and take part in the decision-making process, despite not having a full understanding of the complexity of their illnesses. The challenge for healthcare professionals is to get more staff involved in active learning, which is essential as learning directly from older people is a key to developing excellence in caring for them. Older persons must be enabled to become more actively involved in planning and monitoring the relationship, which can be time consuming due to the need to transform the healthcare culture to promote a relationship approach. Achieving genuine involvement can be challenging as one needs to listen and respond to older persons as a way to strengthen involvement in shared decision-making. This form of user involvement is a strategy for practice and professionals must reflect over their own role in the relationship and attempt to learn about the views and experiences of the older persons, even those who are extremely old and frail. Skilled facilitation and a transformational experience can increase the motivation to strengthen the relationship. Western society has been influenced by so- called healthcare consumerism [
Increased knowledge (self-efficacy) about the illness can be associated with the concept of self-efficacy, originally proposed by the American social learning psychologist Bandura [
Handling decisional conflict can be related to a state of uncertainty about a course of action and is more likely when someone is faced with decisions involving risk or uncertain outcomes and when there is a need to make trade-offs between choices. Influence of age and gender on participation. There can be several possible explanations for the lower involvement of older patients in decision-making, including adherence to traditional social norms that support a passive patient role, sensory and cognitive changes that might have influence decision- making and negative attitudes such as ageism on the part of healthcare professionals. Older persons also seem to be more comfortable with healthcare professionals making decisions than younger patients. How healthcare professionals communicate can be important in terms of asking for older patients’ input about choices. Studies have shown that such partnership-building communication is positively associated with patient satisfaction [
Further research should assess whether perceived involvement in decision-making is a product of age differences in the norms that govern the encounter between the old person and the healthcare professional or a result of aging that might reduce the old persons’ energy levels and ability to participate in the decision-making process. Future studies should investigate whether the importance of these two provider styles varies for different populations, as well as explore other features of patient-provider relationships that may contribute to disparities in care processes and outcomes.
Self-management can be seen as a shift away from the traditional medical model by changing the way of working in primary care [
Bias is described as leading to distortion in the results and threatening validity [
According to Shadish et al. [
The search strategy could be a limitation in a review, as the possibility of excluding relevant studies is ever present. The number of studies published are increasing and new evidence could change the relevance of a review in terms of dependability, which refers to the stability (reliability) of data and conditions over time [
Healthcare professionals must devote time and effort to explaining procedures or treatment plans to older patients. Taking the time to listen to an older person can strengthen her/his involvement in shared decision-making, enabling her/him to express health concerns and personal treatment preferences. In addition, it is important to assess and address dialogue difficulties such as impaired hearing or vision. Working closely with family members and other caregivers can facilitate an adequate exchange of information and optimal participation in decision-making. Healthcare professionals are well positioned to play an advocacy role for older patients by facilitating their participation in decision-making.
We want to thank Monique Federsel for reviewing the English language.
The author’s declare that there are no conflicts of interest.
The study was designed by A.L.H. A.L.H. coordinated the research. All authors participated in the data analysis. All authors contributed intellectually to the writing of the manuscript. All authors read and approved the final manuscript.
Anne LiseHolm,Astrid KarinBerland,ElisabethSeverinsson, (2016) Older Patients’ Involvement in Shared Decision-Making—A Systematic Review. Open Journal of Nursing,06,170-185. doi: 10.4236/ojn.2016.63018