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1.  General practitioners' views on reattribution for patients with medically unexplained symptoms: a questionnaire and qualitative study 
BMC Family Practice  2008;9:46.
The successful introduction of new methods for managing medically unexplained symptoms in primary care is dependent to a large degree on the attitudes, experiences and expectations of practitioners. As part of an exploratory randomised controlled trial of reattribution training, we sought the views of participating practitioners on patients with medically unexplained symptoms, and on the value of and barriers to the implementation of reattribution in practice.
A nested attitudinal survey and qualitative study in sixteen primary care teams in north-west England. All practitioners participating in the trial (n = 74) were invited to complete a structured survey. Semi-structured interviews were undertaken with a purposive sub-sample of survey respondents, using a structured topic guide. Interview transcripts were used to identify key issues, concepts and themes, which were grouped to construct a conceptual framework: this framework was applied systematically to the data.
Seventy (95%) of study participants responded to the survey. Survey respondents often found it stressful to work with patients with medically unexplained symptoms, though those who had received reattribution training were more optimistic about their ability to help them. Interview participants trained in reattribution (n = 12) reported that reattribution increased their confidence to practice in a difficult area, with heightened awareness, altered perceptions of these patients, improved opportunities for team-building and transferable skills. However general practitioners also reported potential barriers to the implementation of reattribution in routine clinical practice, at the level of the patient, the doctor, the consultation, diagnosis and the healthcare context.
Reattribution training increases practitioners' sense of competence in managing patients with medically unexplained symptoms. However, barriers to its implementation are considerable, and frequently lie outside the control of a group of practitioners generally sympathetic to patients with medically unexplained symptoms and the purpose of reattribution. These findings add further to the evidence of the difficulty of implementing reattribution in routine general practice.
PMCID: PMC2533666  PMID: 18713473
2.  Why do General Practitioners Decline Training to Improve Management of Medically Unexplained Symptoms? 
General practitioners’ (GPs) communication with patients presenting medically unexplained symptoms (MUS) has the potential to somatize patients’ problems and intensify dependence on medical care. Several reports indicate that GPs have negative attitudes about patients with MUS. If these attitudes deter participation in training or other methods to improve communication, practitioners who most need help will not receive it.
To identify how GPs’ attitudes to patients with MUS might inhibit their participation with training to improve management.
Qualitative study.
GPs (N = 33) who had declined or accepted training in reattribution techniques in the context of a research trial.
GPs were interviewed and their accounts analysed qualitatively.
Although attitudes that devalued patients with MUS were common in practitioners who had declined training, these coexisted, in the same practitioners, with evidence of intuitive and elaborate psychological work with these patients. However, these practitioners devalued their psychological skills. GPs who had accepted training also described working psychologically with MUS but devalued neither patients with MUS nor their own psychological skills.
GPs’ attitudes that suggested disengagement from patients with MUS belied their pursuit of psychological objectives. We therefore suggest that, whereas negative attitudes to patients have previously been regarded as the main barrier to involvement in measures to improve patient management, GPs devaluing of their own psychological skills with these patients may be more important.
PMCID: PMC1855690  PMID: 17443362
medically unexplained symptoms; general practitioners; management; psychological skills; attitudes
3.  Why do General Practitioners Decline Training to Improve Management of Medically Unexplained Symptoms? 
General practitioners’ (GPs) communication with patients presenting medically unexplained symptoms (MUS) has the potential to somatize patients’ problems and intensify dependence on medical care. Several reports indicate that GPs have negative attitudes about patients with MUS. If these attitudes deter participation in training or other methods to improve communication, practitioners who most need help will not receive it.
To identify how GPs’ attitudes to patients with MUS might inhibit their participation with training to improve management.
Qualitative study.
GPs (N = 33) who had declined or accepted training in reattribution techniques in the context of a research trial.
GPs were interviewed and their accounts analysed qualitatively.
Although attitudes that devalued patients with MUS were common in practitioners who had declined training, these coexisted, in the same practitioners, with evidence of intuitive and elaborate psychological work with these patients. However, these practitioners devalued their psychological skills. GPs who had accepted training also described working psychologically with MUS but devalued neither patients with MUS nor their own psychological skills.
GPs’ attitudes that suggested disengagement from patients with MUS belied their pursuit of psychological objectives. We therefore suggest that, whereas negative attitudes to patients have previously been regarded as the main barrier to involvement in measures to improve patient management, GPs devaluing of their own psychological skills with these patients may be more important.
PMCID: PMC1855690  PMID: 17443362
medically unexplained symptoms; general practitioners; management; psychological skills; attitudes
4.  Integrating nurse-led Self-Management Support (SMS) in routine primary care: design of a hybrid effectiveness-implementation study among type 2 diabetes patients with problems of daily functioning and emotional distress: a study protocol 
BMC Family Practice  2013;14:77.
Psychosocial problems are more prevalent among patients with chronic diseases than among the general population. They may lead to a downward spiral of poor adherence, deterioration of the condition and decline in daily functioning. In addition to medical management, systematic attention to emotional and role management tasks during routine chronic care seems mandatory. We intend to integrate an existing nurse-led minimal psychological intervention to support patients’ self-management, which appeared to be effective and cost-effective, in routine care by primary care nurses, so we adjusted it to fit the host setting. The resulting Self-Management Support (SMS) programme involves early detection of patients with emotional distress and problems of daily functioning, as well as self-management support through problem solving and reattribution techniques. Strategies to embed SMS in daily practice include training and booster sessions for practice nurses as well as organisational and financial arrangements. This study aims to simultaneously evaluate the implementation process and effects of SMS in routine care, using a hybrid effectiveness–implementation design.
Registration data, questionnaires and interviews will be used to explore the facilitators, barriers and costs regarding successful implementation of SMS. The effects of SMS will be evaluated in a pragmatic cluster-randomised controlled trial with a baseline measurement and follow-up measurements after 4 and 12 months. The population will consist of 46 practice nurses and their type 2 diabetes patients (N = 460; 10 per practice nurse). The practice nurses will be randomly assigned to the intervention or control group. Practice nurses of the intervention group will receive SMS training. Patients for the intervention and control groups will be recruited by a researcher-led self-administered screening procedure to decide which patients of those scheduled for routine consultation are likely to be detected by the practice nurses as eligible for the self-management support. Primary outcome measure is patients’ daily functioning. Secondary measures include emotional well-being, participation, autonomy and control over the disease.
Our hybrid study design is complicated by the detection method used by the practice nurses. This method is an implementation issue in itself that has consequences for the realisation and power of the effect evaluation.
Trial registration
Current Controlled Trials, NTR2764
PMCID: PMC3699365  PMID: 23758974
Hybrid Effectiveness–Implementation Design; Primary Care; Chronic Disease; Psychosocial Problems; Self-Management; Practice Nurse
5.  Lessons learnt from a cluster-randomised trial evaluating the effectiveness of Self-Management Support (SMS) delivered by practice nurses in routine diabetes care 
BMJ Open  2015;5(6):e007014.
To evaluate the effectiveness of biopsychosocial Self-Management Support (SMS) delivered by practice nurses in routine diabetes care.
A pragmatic cluster-randomised controlled trial within a hybrid effectiveness-implementation study design. Practice nurses were cluster-randomised.
A regional care group in the Netherlands consisting of 77 family practices. The study involved practice nurses (n=40) providing care to approximately 4000 patients with diabetes.
Patients with type 2 diabetes (n=264) selected by a self-administered questionnaire aimed at measuring emotional distress and diabetes-related reduced daily functioning.
Practice nurses in the intervention arm (n=19) were trained to integrate SMS into their routine consultations. SMS included detection of patients with emotional distress and reduced daily functioning, and supporting them when needed through problem solving and reattribution techniques. Practice nurses in the control arm (n=21) provided usual care.
Main outcome measures
The primary outcome measure was a dichotomised score on a Visual Analogue Scale that measured the perceived effect of diabetes on daily functioning. Secondary measures included patients’ diabetes-related distress, quality of life, autonomy and participation, self-efficacy, self-management and glycaemic control. Outcomes were measured at baseline and at 4-month and 12-month follow-ups.
Only 16 of the 117 patients in the intervention arm (14%) who were found eligible by the posted research-driven screening questionnaire were detected by their practice nurses. Extra consultations for the self-management support were delivered to only 11 study participants. In the control arm, 147 patients received usual care. Multilevel analyses showed no significant differences in outcomes between the intervention and control arms.
SMS in its present form was not effective. The research-driven screening to select trial participants appeared to be inconsistent with nurse-led detection in routine practice. Adequate follow-up moments need to be built in to overcome barriers resulting from tension between the implementation and effectiveness parts of hybrid studies.
Trial registration number
Current Controlled Trials NTR2764.
PMCID: PMC4486946  PMID: 26112220
6.  Diagnosis of somatisation: effect of an educational intervention in a cluster randomised controlled trial. 
BACKGROUND: Somatisation is highly prevalent in primary care (present in 25% of visiting patients) but often goes unrecognised. Non-recognition may lead to ineffective treatment, risk of iatrogenic harm, and excessive use of healthcare services. AIM: To examine the effect of training on diagnosis of somatisation in routine clinical practice by general practitioners (GPs). DESIGN OF STUDY: Cluster randomised controlled trial, with practices as the randomisation unit. SETTING: Twenty-seven general practices (with a total of 43 GPs) in Vejle County, Denmark. METHOD: Intervention consisted of a multifaceted training programme (the TERM [The Extended Reattribution and Management] model). Patients were enrolled consecutively over a period of 13 working days. Psychiatric morbidity was assessed by means of a screening questionnaire. GPs categorised their diagnoses in another questionnaire. The primary outcome was GP diagnosis of somatisation and agreement with the screening questionnaire. RESULTS: GPs diagnosed somatisation less frequently than had previously been observed, but there was substantial variation between GPs. The difference between groups in the number of diagnoses of somatisation failed to reach the 5% significance (P = 0.094). However, the rate of diagnoses of medically unexplained physical symptoms was twice as high in the intervention group as in the control group (7.7% and 3.9%, respectively, P = 0.007). Examination of the agreement between GPs' diagnoses and the screening questionnaire revealed no significant difference between groups. CONCLUSION: Brief training increased GPs' awareness of medically unexplained physical symptoms. Diagnostic accuracy according to a screening questionnaire remained unaffected but was difficult to evaluate, as there is no agreement on a gold standard for somatisation in general practice.
PMCID: PMC1314743  PMID: 14960214
7.  Patient Perspectives on Online Health Information and Communication With Doctors: A Qualitative Study of Patients 50 Years Old and Over 
As health care systems around the world shift toward models that emphasize self-care management, there is increasing pressure for patients to obtain health information online. It is critical that patients are able to identify potential problems with using the Internet to diagnose and treat a health issue and that they feel comfortable communicating with their doctor about the health information they acquire from the Internet.
Our aim was to examine patient-identified (1) problems with using the Internet to identify and treat a health issue, (2) barriers to communication with a doctor about online health information seeking, and (3) facilitators of communication with a doctor about patient searches for health information on the Internet.
For this qualitative exploratory study, semistructured interviews were conducted with a sample of 56 adults age 50 years old and over. General concerns regarding use of the Internet to diagnose and treat a health issue were examined separately for participants based on whether they had ever discussed health information obtained through the Internet with a doctor. Discussions about barriers to and facilitators of communication about patient searches for health information on the Internet with a doctor were analyzed using thematic analysis.
Six higher-level general concerns emerged: (1) limitations in own ability, (2) credibility/limitations of online information, (3) anxiety, (4) time consumption, (5) conflict, and (6) non-physical harm. The most prevalent concern raised by participants who communicated with a doctor about their online health information seeking related to the credibility or limitations in online information. Participants who had never communicated with a doctor about their online health information seeking most commonly reported concerns about non-physical harm. Four barriers to communication emerged: (1) concerns about embarrassment, (2) concerns that the doctor doesn’t want to hear about it, (3) belief that there is no need to bring it up, and (4) forgetting to bring it up. Facilitators of communication included: (1) having a family member present at doctor visits, (2) doctor-initiated inquiries, and (3) encountering an advertisement that suggested talking with a doctor.
Overall, participants displayed awareness of potential problems related to online health information seeking. Findings from this study point to a set of barriers as well as facilitators of communication about online health information seeking between patients and doctors. This study highlights the need for enhanced patient communication skills, eHealth literacy assessments that are accompanied by targeted resources pointing individuals to high-quality credible online health information, and the need to remind patients of the importance of consulting a medical professional when they use online health resources to diagnose and treat a health issue.
PMCID: PMC4319073  PMID: 25586865
health communication; Internet; online health information seeking; barriers to patient-doctor communication; adults 50 years old and over; qualitative research
8.  Facilitators and barriers for GP–patient communication in palliative care: a qualitative study among GPs, patients, and end-of-life consultants 
The British Journal of General Practice  2011;61(585):e167-e172.
Effective communication is considered to be essential for the delivery of high-quality care. Communication in palliative care may be particularly difficult, and there is still no accepted set of communication skills for GPs in providing palliative care.
To obtain detailed information on facilitators and barriers for GP–patient communication in palliative care, with the aim to develop training programmes that enable GPs to improve their palliative care communication skills.
Design of study
Qualitative study with focus groups, interviews, and questionnaires.
GPs with patients receiving palliative care at home, and end-of-life consultants in the Netherlands.
GP (n = 20) focus groups discussing facilitators and barriers, palliative care patient (n = 6) interviews regarding facilitators, and end-of-life consultant (n = 22) questionnaires concerning barriers.
Facilitators reported by both GPs and patients were accessibility, taking time, commitment, and listening carefully. GPs emphasise respect, while patients want GPs to behave in a friendly way, and to take the initiative to discuss end-of-life issues. Barriers reported by both GPs and end-of-life consultants were: difficulty in dealing with former doctors' delay and strong demands from patients' relatives. GPs report difficulty in dealing with strong emotions and troublesome doctor–patient relationships, while consultants report insufficient clarification of patients' problems, promises that could not be kept, helplessness, too close involvement, and insufficient anticipation of various scenarios.
The study findings suggest that the quality of GP–patient communication in palliative care in the Netherlands can be improved. It is recommended that specific communication training programmes for GPs should be developed and evaluated.
PMCID: PMC3063045  PMID: 21439174
communication; palliative care; physicians, family; physician–patient relationship; qualitative research
9.  Quality of interaction between primary health-care providers and patients with type 2 diabetes in Muscat, Oman: an observational study 
BMC Family Practice  2006;7:72.
A good patient-physician interaction is particularly important in chronic diseases like diabetes. There are so far no published data regarding the interaction between the primary health-care providers and patients with type 2 diabetes in Oman, where diabetes is a major and growing health problem. This study aimed at exploring how health-care providers interact with patients with type 2 diabetes at primary health-care level in Muscat, Oman, focusing on the consultation environment, and some aspects of care and information.
Direct observations of 90 consultations between 23 doctors and 13 diabetes nurses concerned with diabetes management during their consultations with type 2 diabetes patients in six primary health-care centres in the Muscat region, using checklists developed from the National Diabetes Guidelines. Consultations were assessed as optimal if more than 75% of observed aspects were fulfilled and sub-optimal if less than 50% were fulfilled.
Overall 52% of the doctors' consultations were not optimal. Some important aspects for a positive consultation environment were fulfilled in only about half of the doctors' consultations: ensuring privacy of consultation (49%), eye contact (49%), good attention (52%), encouraging asking questions (47%), and emphasizing on the patients' understanding of the provided information (52%). The doctors enquired about adverse effects of anti-diabetes drugs in less than 10% of consultations. The quality of the nurses' consultations was sub-optimal in about 75% of 85 consultations regarding aspects of consultation environment, care and information.
The performance of the primary health-care doctors and diabetes nurses needs to be improved. The role of the diabetes nurses and the teamwork should be enhanced. We suggest a multidisciplinary team approach, training and education to the providers to upgrade their skills regarding communication and care. Barriers to compliance with the guidelines need to be further explored. Improving the work situation mainly for the diabetes nurses and further improvement in the organizational efficiency of diabetes services such as lowering the number of patients in diabetes clinic, are suggested.
PMCID: PMC1764013  PMID: 17156424
10.  Task Shifting for Scale-up of HIV Care: Evaluation of Nurse-Centered Antiretroviral Treatment at Rural Health Centers in Rwanda 
PLoS Medicine  2009;6(10):e1000163.
Fabienne Shumbusho and colleagues evaluate a task-shifting model of nurse-centered antiretroviral treatment prescribing in rural primary health centers in Rwanda and find that nurses can effectively and safely prescribe ART when given adequate training, mentoring, and support.
The shortage of human resources for health, and in particular physicians, is one of the major barriers to achieve universal access to HIV care and treatment. In September 2005, a pilot program of nurse-centered antiretroviral treatment (ART) prescription was launched in three rural primary health centers in Rwanda. We retrospectively evaluated the feasibility and effectiveness of this task-shifting model using descriptive data.
Methods and Findings
Medical records of 1,076 patients enrolled in HIV care and treatment services from September 2005 to March 2008 were reviewed to assess: (i) compliance with national guidelines for ART eligibility and prescription, and patient monitoring and (ii) key outcomes, such as retention, body weight, and CD4 cell count change at 6, 12, 18, and 24 mo after ART initiation. Of these, no ineligible patients were started on ART and only one patient received an inappropriate ART prescription. Of the 435 patients who initiated ART, the vast majority had adherence and side effects assessed at each clinic visit (89% and 84%, respectively). By March 2008, 390 (90%) patients were alive on ART, 29 (7%) had died, one (<1%) was lost to follow-up, and none had stopped treatment. Patient retention was about 92% by 12 mo and 91% by 24 mo. Depending on initial stage of disease, mean CD4 cell count increased between 97 and 128 cells/µl in the first 6 mo after treatment initiation and between 79 and 129 cells/µl from 6 to 24 mo of treatment. Mean weight increased significantly in the first 6 mo, between 1.8 and 4.3 kg, with no significant increases from 6 to 24 mo.
Patient outcomes in our pilot program compared favorably with other ART cohorts in sub-Saharan Africa and with those from a recent evaluation of the national ART program in Rwanda. These findings suggest that nurses can effectively and safely prescribe ART when given adequate training, mentoring, and support.
Please see later in the article for the Editors' Summary
Editors' Summary
Infection with the human immunodeficiency virus (HIV) is a serious health problem in sub-Saharan Africa. The virus attacks white blood cells that protect against infection, most commonly a type of white blood cell called CD4. When a person has been infected with HIV for a long time, the number of CD4 cells they have goes down, resulting in acquired immune deficiency syndrome (AIDS), in which the person's immune system no longer functions effectively.
The World Health Organization (WHO) has divided the disease into four stages as it progresses, according to symptoms including weight loss and so-called opportunistic infections. These are known as clinical stage I, II, III, or IV but were revised and renamed 1, 2, 3, and 4 in September 2005. HIV infection and AIDS cannot be cured but they can be managed with antiretroviral treatment (ART). The WHO currently recommends that ART is begun when the CD4 count falls below 350.
Rwanda is a country situated in the central Africa with a population of around 9 million inhabitants; over 3% of the rural population and 7% of the urban population are infected with HIV. In 2007, the WHO estimated that 220,000 Rwandan children had lost one or both parents to AIDS.
Why Was This Study Done?
The WHO estimates that 9.7 million people with HIV in low- to middle-income countries need ART but at the end of 2007, only 30% of these, including in Rwanda, had access to treatment. In many low-income countries a major factor in this is a lack of doctors. Rwanda, for example, has one doctor per 50,000 inhabitants and one nurse per 3,900 inhabitants.
This situation has led the WHO to recommend “task shifting,” i.e., that the task of prescribing ART should be shifted from doctors to nurses so that more patients can be treated. This type of reorganization is well studied in high-income countries, but the researchers wanted to help develop a system for treating AIDS that would be effective and timely in a predominantly rural, low-income setting such as Rwanda.
What Did the Researchers Do and Find?
In conjunction with the Rwandan Ministry of Health, the researchers developed and piloted a task-shifting program, in which one nurse in each of three rural Rwandan primary health centers (PHCs) was trained to examine HIV patients and prescribe ART in simple cases. Nurses had to complete more than 50 consultations observed by the doctor before being permitted to consult patients independently. More complex cases were referred to a doctor. The authors developed standard checklists, instructions, and evaluation forms to guide nurses and the doctors who supervised them once a week.
The authors evaluated the pilot program by reviewing the records of 1,076 patients who enrolled on it between September 2005 and March 2008. They looked to see whether the nurses had followed guidelines and monitored the patients correctly. They also considered health outcomes for the patients, such as their death rate, their body weight, their CD4 cell count, and whether they maintained contact with caregivers.
They found that by March 2008, 451 patients had been eligible for ART. 435 received treatment and none of the patients were prescribed ART when they should not have been. Only one prescription did not follow national guidelines.
At every visit, nurses were supposed to assess whether patients were taking their drugs and to monitor side effects. They did this and maintained records correctly for the vast majority of the 435 patients who were prescribed ART. 390 patients (over 90%) of the 435 prescribed receiving ART continued to take it and maintain contact with the pilot PHC's program. 29 patients died. Only one was lost to follow up and the others transferred to another ART site. The majority gained weight in the first six months and their CD4 cell counts rose. Outcomes, including death rate, were similar to those treated on the (doctor-led) Rwandan national ART program and other sub-Saharan African national (doctor-led) programs.
What Do These Findings Mean?
The study suggests that nurses are able to prescribe ART safely and effectively in a rural sub-Saharan setting, given sufficient training, mentoring, and support. Nurse-led prescribing of ART could mean that timely, appropriate treatment reaches many more HIV patients. It would reduce the burden of HIV care for doctors, freeing their time for other duties, and the study is already being used by the Rwandan Ministry of Health as a basis for plans to adopt a task-shifting strategy for the national ART program.
The study does have some limitations. The pilot program was funded and designed as a health project to deliver ART in rural areas, rather than a research project to compare nurse-led and doctor-led ART programs. There was no group of equivalent patients treated by doctors rather than nurses for direct comparison, although the authors did compare outcomes with those achieved nationally for doctor-led ART. The most promising sites, nurses, and patients were selected for the pilot and careful monitoring may have been an additional motivation for the nurses and doctors taking part. Health professionals in a scaled-up program may not be as committed as those in the pilot, who were carefully monitored. In addition, the nature of the pilot, which lasted for under three years and recruited new patients throughout, meant that patients were followed up for relatively short periods.
The authors also warn that they did not consider in this study the changes task shifting will make to doctors' roles and the skills required of both doctors and nurses. They recommend that task shifting should be implemented as part of a wider investment in health systems, human resources, training, adapted medical records, tools, and protocols.
Additional Information
Please access these Web sites via the online version of this summary at
PLoS Medicine includes a page collecting together its recent articles on HIV infection and AIDS that includes research articles, perspectives, editorials, and policy forums provides news, views, and information about science, technology, and the developing world, including a section specific to HIV/AIDs
The World Health Organization (WHO) has published a downloadable booklet Task Shifting to Tackle Health Worker Shortages
The WHO offers information on HIV and AIDS (in Arabic, Chinese, English, French, Russian, and Spanish) as well as health information and fact sheets on individual countries, including on Rwanda
The UNAIDS/WHO working group on HIV/AIDS and Sexually Transmitted Infections (STI) Surveillance gathers and publishes data on the prevalence of HIV and AIDS in individual countries, including on Rwanda
AIDS.ORG provides information to help prevent HIV infections and to improve the lives of those affected by HIV and AIDS. Factsheets on many aspects of HIV and AIDS are available. It is the official online publisher of AIDS Treatment News
PMCID: PMC2752160  PMID: 19823569
11.  Caregiver- and Patient-Directed Interventions for Dementia 
Executive Summary
In early August 2007, the Medical Advisory Secretariat began work on the Aging in the Community project, an evidence-based review of the literature surrounding healthy aging in the community. The Health System Strategy Division at the Ministry of Health and Long-Term Care subsequently asked the secretariat to provide an evidentiary platform for the ministry’s newly released Aging at Home Strategy.
After a broad literature review and consultation with experts, the secretariat identified 4 key areas that strongly predict an elderly person’s transition from independent community living to a long-term care home. Evidence-based analyses have been prepared for each of these 4 areas: falls and fall-related injuries, urinary incontinence, dementia, and social isolation. For the first area, falls and fall-related injuries, an economic model is described in a separate report.
Please visit the Medical Advisory Secretariat Web site,, to review these titles within the Aging in the Community series.
Aging in the Community: Summary of Evidence-Based Analyses
Prevention of Falls and Fall-Related Injuries in Community-Dwelling Seniors: An Evidence-Based Analysis
Behavioural Interventions for Urinary Incontinence in Community-Dwelling Seniors: An Evidence-Based Analysis
Caregiver- and Patient-Directed Interventions for Dementia: An Evidence-Based Analysis
Social Isolation in Community-Dwelling Seniors: An Evidence-Based Analysis
The Falls/Fractures Economic Model in Ontario Residents Aged 65 Years and Over (FEMOR)
This report features the evidence-based analysis on caregiver- and patient-directed interventions for dementia and is broken down into 4 sections:
Caregiver-Directed Interventions for Dementia
Patient-Directed Interventions for Dementia
Economic Analysis of Caregiver- and Patient-Directed Interventions for Dementia
Caregiver-Directed Interventions for Dementia
To identify interventions that may be effective in supporting the well-being of unpaid caregivers of seniors with dementia living in the community.
Clinical Need: Target Population and Condition
Dementia is a progressive and largely irreversible syndrome that is characterized by a loss of cognitive function severe enough to impact social or occupational functioning. The components of cognitive function affected include memory and learning, attention, concentration and orientation, problem-solving, calculation, language, and geographic orientation. Dementia was identified as one of the key predictors in a senior’s transition from independent community living to admission to a long-term care (LTC) home, in that approximately 90% of individuals diagnosed with dementia will be institutionalized before death. In addition, cognitive decline linked to dementia is one of the most commonly cited reasons for institutionalization.
Prevalence estimates of dementia in the Ontario population have largely been extrapolated from the Canadian Study of Health and Aging conducted in 1991. Based on these estimates, it is projected that there will be approximately 165,000 dementia cases in Ontario in the year 2008, and by 2010 the number of cases will increase by nearly 17% over 2005 levels. By 2020 the number of cases is expected to increase by nearly 55%, due to a rise in the number of people in the age categories with the highest prevalence (85+). With the increase in the aging population, dementia will continue to have a significant economic impact on the Canadian health care system. In 1991, the total costs associated with dementia in Canada were $3.9 billion (Cdn) with $2.18 billion coming from LTC.
Caregivers play a crucial role in the management of individuals with dementia because of the high level of dependency and morbidity associated with the condition. It has been documented that a greater demand is faced by dementia caregivers compared with caregivers of persons with other chronic diseases. The increased burden of caregiving contributes to a host of chronic health problems seen among many informal caregivers of persons with dementia. Much of this burden results from managing the behavioural and psychological symptoms of dementia (BPSD), which have been established as a predictor of institutionalization for elderly patients with dementia.
It is recognized that for some patients with dementia, an LTC facility can provide the most appropriate care; however, many patients move into LTC unnecessarily. For individuals with dementia to remain in the community longer, caregivers require many types of formal and informal support services to alleviate the stress of caregiving. These include both respite care and psychosocial interventions. Psychosocial interventions encompass a broad range of interventions such as psychoeducational interventions, counseling, supportive therapy, and behavioural interventions.
Assuming that 50% of persons with dementia live in the community, a conservative estimate of the number of informal caregivers in Ontario is 82,500. Accounting for the fact that 29% of people with dementia live alone, this leaves a remaining estimate of 58,575 Ontarians providing care for a person with dementia with whom they reside.
Description of Interventions
The 2 main categories of caregiver-directed interventions examined in this review are respite care and psychosocial interventions. Respite care is defined as a break or relief for the caregiver. In most cases, respite is provided in the home, through day programs, or at institutions (usually 30 days or less). Depending on a caregiver’s needs, respite services will vary in delivery and duration. Respite care is carried out by a variety of individuals, including paid staff, volunteers, family, or friends.
Psychosocial interventions encompass a broad range of interventions and have been classified in various ways in the literature. This review will examine educational, behavioural, dementia-specific, supportive, and coping interventions. The analysis focuses on behavioural interventions, that is, those designed to help the caregiver manage BPSD. As described earlier, BPSD are one of the most challenging aspects of caring for a senior with dementia, causing an increase in caregiver burden. The analysis also examines multicomponent interventions, which include at least 2 of the above-mentioned interventions.
Methods of Evidence-Based Analysis
A comprehensive search strategy was used to identify systematic reviews and randomized controlled trials (RCTs) that examined the effectiveness of interventions for caregivers of dementia patients.
Section 2.1
Are respite care services effective in supporting the well-being of unpaid caregivers of seniors with dementia in the community?
Do respite care services impact on rates of institutionalization of these seniors?
Section 2.2
Which psychosocial interventions are effective in supporting the well-being of unpaid caregivers of seniors with dementia in the community?
Which interventions reduce the risk for institutionalization of seniors with dementia?
Outcomes of Interest
any quantitative measure of caregiver psychological health, including caregiver burden, depression, quality of life, well-being, strain, mastery (taking control of one’s situation), reactivity to behaviour problems, etc.;
rate of institutionalization; and
Assessment of Quality of Evidence
The quality of the evidence was assessed as High, Moderate, Low, or Very low according to the GRADE methodology and GRADE Working Group. As per GRADE the following definitions apply:
Summary of Findings
Conclusions in Table 1 are drawn from Sections 2.1 and 2.2 of the report.
Summary of Conclusions on Caregiver-Directed Interventions
There is limited evidence from RCTs that respite care is effective in improving outcomes for those caring for seniors with dementia.
There is considerable qualitative evidence of the perceived benefits of respite care.
Respite care is known as one of the key formal support services for alleviating caregiver burden in those caring for dementia patients.
Respite care services need to be tailored to individual caregiver needs as there are vast differences among caregivers and patients with dementia (severity, type of dementia, amount of informal/formal support available, housing situation, etc.)
There is moderate- to high-quality evidence that individual behavioural interventions (≥ 6 sessions), directed towards the caregiver (or combined with the patient) are effective in improving psychological health in dementia caregivers.
There is moderate- to high-quality evidence that multicomponent interventions improve caregiver psychosocial health and may affect rates of institutionalization of dementia patients.
RCT indicates randomized controlled trial.
Patient-Directed Interventions for Dementia
The section on patient-directed interventions for dementia is broken down into 4 subsections with the following questions:
3.1 Physical Exercise for Seniors with Dementia – Secondary Prevention
What is the effectiveness of physical exercise for the improvement or maintenance of basic activities of daily living (ADLs), such as eating, bathing, toileting, and functional ability, in seniors with mild to moderate dementia?
3.2 Nonpharmacologic and Nonexercise Interventions to Improve Cognitive Functioning in Seniors With Dementia – Secondary Prevention
What is the effectiveness of nonpharmacologic interventions to improve cognitive functioning in seniors with mild to moderate dementia?
3.3 Physical Exercise for Delaying the Onset of Dementia – Primary Prevention
Can exercise decrease the risk of subsequent cognitive decline/dementia?
3.4 Cognitive Interventions for Delaying the Onset of Dementia – Primary Prevention
Does cognitive training decrease the risk of cognitive impairment, deterioration in the performance of basic ADLs or instrumental activities of daily living (IADLs),1 or incidence of dementia in seniors with good cognitive and physical functioning?
Clinical Need: Target Population and Condition
Secondary Prevention2
Physical deterioration is linked to dementia. This is thought to be due to reduced muscle mass leading to decreased activity levels and muscle atrophy, increasing the potential for unsafe mobility while performing basic ADLs such as eating, bathing, toileting, and functional ability.
Improved physical conditioning for seniors with dementia may extend their independent mobility and maintain performance of ADL.
Nonpharmacologic and Nonexercise Interventions
Cognitive impairments, including memory problems, are a defining feature of dementia. These impairments can lead to anxiety, depression, and withdrawal from activities. The impact of these cognitive problems on daily activities increases pressure on caregivers.
Cognitive interventions aim to improve these impairments in people with mild to moderate dementia.
Primary Prevention3
Various vascular risk factors have been found to contribute to the development of dementia (e.g., hypertension, hypercholesterolemia, diabetes, overweight).
Physical exercise is important in promoting overall and vascular health. However, it is unclear whether physical exercise can decrease the risk of cognitive decline/dementia.
Nonpharmacologic and Nonexercise Interventions
Having more years of education (i.e., a higher cognitive reserve) is associated with a lower prevalence of dementia in crossectional population-based studies and a lower incidence of dementia in cohorts followed longitudinally. However, it is unclear whether cognitive training can increase cognitive reserve or decrease the risk of cognitive impairment, prevent or delay deterioration in the performance of ADLs or IADLs or reduce the incidence of dementia.
Description of Interventions
Physical exercise and nonpharmacologic/nonexercise interventions (e.g., cognitive training) for the primary and secondary prevention of dementia are assessed in this review.
Evidence-Based Analysis Methods
A comprehensive search strategy was used to identify systematic reviews and RCTs that examined the effectiveness, safety and cost effectiveness of exercise and cognitive interventions for the primary and secondary prevention of dementia.
Section 3.1: What is the effectiveness of physical exercise for the improvement or maintenance of ADLs in seniors with mild to moderate dementia?
Section 3.2: What is the effectiveness of nonpharmacologic/nonexercise interventions to improve cognitive functioning in seniors with mild to moderate dementia?
Section 3.3: Can exercise decrease the risk of subsequent cognitive decline/dementia?
Section 3.4: Does cognitive training decrease the risk of cognitive impairment, prevent or delay deterioration in the performance of ADLs or IADLs, or reduce the incidence of dementia in seniors with good cognitive and physical functioning?
Assessment of Quality of Evidence
The quality of the evidence was assessed as High, Moderate, Low, or Very low according to the GRADE methodology. As per GRADE the following definitions apply:
Summary of Findings
Table 2 summarizes the conclusions from Sections 3.1 through 3.4.
Summary of Conclusions on Patient-Directed Interventions*
Previous systematic review indicated that “cognitive training” is not effective in patients with dementia.
A recent RCT suggests that CST (up to 7 weeks) is effective for improving cognitive function and quality of life in patients with dementia.
Regular leisure time physical activity in midlife is associated with a reduced risk of dementia in later life (mean follow-up 21 years).
Regular physical activity in seniors is associated with a reduced risk of cognitive decline (mean follow-up 2 years).
Regular physical activity in seniors is associated with a reduced risk of dementia (mean follow-up 6–7 years).
Evidence that cognitive training for specific functions (memory, reasoning, and speed of processing) produces improvements in these specific domains.
Limited inconclusive evidence that cognitive training can offset deterioration in the performance of self-reported IADL scores and performance assessments.
1° indicates primary; 2°, secondary; CST, cognitive stimulation therapy; IADL, instrumental activities of daily living; RCT, randomized controlled trial.
Benefit/Risk Analysis
As per the GRADE Working Group, the overall recommendations consider 4 main factors:
the trade-offs, taking into account the estimated size of the effect for the main outcome, the confidence limits around those estimates, and the relative value placed on the outcome;
the quality of the evidence;
translation of the evidence into practice in a specific setting, taking into consideration important factors that could be expected to modify the size of the expected effects such as proximity to a hospital or availability of necessary expertise; and
uncertainty about the baseline risk for the population of interest.
The GRADE Working Group also recommends that incremental costs of health care alternatives should be considered explicitly alongside the expected health benefits and harms. Recommendations rely on judgments about the value of the incremental health benefits in relation to the incremental costs. The last column in Table 3 reflects the overall trade-off between benefits and harms (adverse events) and incorporates any risk/uncertainty (cost-effectiveness).
Overall Summary Statement of the Benefit and Risk for Patient-Directed Interventions*
Economic Analysis
Budget Impact Analysis of Effective Interventions for Dementia
Caregiver-directed behavioural techniques and patient-directed exercise programs were found to be effective when assessing mild to moderate dementia outcomes in seniors living in the community. Therefore, an annual budget impact was calculated based on eligible seniors in the community with mild and moderate dementia and their respective caregivers who were willing to participate in interventional home sessions. Table 4 describes the annual budget impact for these interventions.
Annual Budget Impact (2008 Canadian Dollars)
Assumed 7% prevalence of dementia aged 65+ in Ontario.
Assumed 8 weekly sessions plus 4 monthly phone calls.
Assumed 12 weekly sessions plus biweekly sessions thereafter (total of 20).
Assumed 2 sessions per week for first 5 weeks. Assumed 90% of seniors in the community with dementia have mild to moderate disease. Assumed 4.5% of seniors 65+ are in long-term care, and the remainder are in the community. Assumed a rate of participation of 60% for both patients and caregivers and of 41% for patient-directed exercise. Assumed 100% compliance since intervention administered at the home. Cost for trained staff from Ministry of Health and Long-Term Care data source. Assumed cost of personal support worker to be equivalent to in-home support. Cost for recreation therapist from Alberta government Website.
Note: This budget impact analysis was calculated for the first year after introducing the interventions from the Ministry of Health and Long-Term Care perspective using prevalence data only. Prevalence estimates are for seniors in the community with mild to moderate dementia and their respective caregivers who are willing to participate in an interventional session administered at the home setting. Incidence and mortality rates were not factored in. Current expenditures in the province are unknown and therefore were not included in the analysis. Numbers may change based on population trends, rate of intervention uptake, trends in current programs in place in the province, and assumptions on costs. The number of patients was based on patients likely to access these interventions in Ontario based on assumptions stated below from the literature. An expert panel confirmed resource consumption.
PMCID: PMC3377513  PMID: 23074509
12.  Why Reassurance Fails in Patients with Unexplained Symptoms—An Experimental Investigation of Remembered Probabilities 
PLoS Medicine  2006;3(8):e269.
Providing reassurance is one of physicians' most frequently used verbal interventions. However, medical reassurance can fail or even have negative effects. This is frequently the case in patients with medically unexplained symptoms. It is hypothesized that these patients are more likely than patients from other groups to incorrectly recall the likelihoods of medical explanations provided by doctors.
Methods and Findings
Thirty-three patients with medically unexplained symptoms, 22 patients with major depression, and 30 healthy controls listened to an audiotaped medical report, as well as to two control reports. After listening to the reports, participants were asked to rate what the doctor thinks the likelihood is that the complaints are caused by a specific medical condition.
Although the doctor rejected most of the medical explanations for the symptoms in his verbal report, the patients with medically unexplained complaints remembered a higher likelihood for medical explanations for their symptoms. No differences were found between patients in the other groups, and for the control conditions. When asked to imagine that the reports were applicable to themselves, patients with multiple medical complaints reported more concerns about their health state than individuals in the other groups.
Physicians should be aware that patients with medically unexplained symptoms recall the likelihood of medical causes for their complaints incorrectly. Therefore, physicians should verify correct understanding by using check-back questions and asking for summaries, to improve the effect of reassurance.
Those patients for whom there is no medical explanation for their symptoms are likely to have more difficulty than other patients in remembering information intended to reassure them about their condition.
Editors' Summary
Being told by the doctor that that niggling headache or persistent stomach ache is not caused by a medical condition reassures most patients. But for some—those with a history of medically unexplained complaints—being told that tests have revealed no underlying cause for their symptoms provides little or no reassurance. Such patients have what is sometimes called “somatization syndrome.” In somatization, mental factors such as stress manifest themselves as physical symptoms. Patients with somatization syndrome start to report multiple medically unexplained symptoms as young adults. These symptoms, which change over time, include pain at different sites in the body and digestive, reproductive, and nervous system problems. What causes this syndrome is unknown and there is no treatment other than helping patients to control their symptoms.
Why Was This Study Done?
Patients with medically unexplained complaints make up a substantial and expensive part of the workload of general medical staff. Part of this expense is because patients with somatization syndrome are not reassured by their medical practitioners telling them there is no physical cause for their symptoms, which leads to requests for further tests. It is unclear why medical reassurance fails in these patients, but if this puzzle could be solved, it might help doctors to deal better with them. In this study, the researchers tested the idea that these patients do not accept medical reassurance because they incorrectly remember what their doctors have told them about the likelihood that specific medical conditions could explain their symptoms.
What Did the Researchers Do and Find?
The researchers recruited patients with medically unexplained symptoms and, for comparison, patients with depression and healthy individuals. All the participants were assessed for somatization syndrome and their general memory tested. They then listened to three audiotapes. In one, a doctor gave test results to a patient with abdominal pain (a medical situation). The other two tapes dealt with a social situation (the lack of an invitation to a barbecue) and a neutral situation (a car breakdown). Each tape contained ten messages, including four that addressed possible explanations for the problem. Two were unambiguous and negative—for example, “the reason for your complaints is definitely not stomach flu.” Two were ambiguous but highly unlikely—“we don't think that you have bowel cancer; this is very unlikely.” The researchers then assessed how well the participants remembered the likelihood that any given explanation was responsible for the patient's symptoms, the missing invitation, or the broken-down car. The patients with somatization syndrome overestimated the likelihood of medical causes for symptoms, particularly (and somewhat surprisingly) when the doctor's assessment had been unambiguous. By contrast, the other participants correctly remembered the doctor's estimates as low. The three study groups were similar in their recall of the likelihood estimates from the social or neutral situation. Finally, when asked to imagine that the medical situation was personally applicable, the patients with unexplained symptoms reacted more emotionally than the other study participants by reporting more concerns with their health.
What Do These Findings Mean?
These results support the researchers' hypothesis that people with somatization syndrome remember the chance that a given symptom has a specific medical cause incorrectly. This is not because of a general memory deficit or an inability to commit health-related facts to memory. The results also indicate that these patients react emotionally to medical situations, so they may find it hard to cope when a doctor fails to explain all their symptoms. Some of these characteristics could, of course, reflect the patients' previous experiences with medical professionals, and the experiment will need to be repeated with additional taped situations and more patients before firm recommendations can be made to help people with somatization syndrome. Nevertheless, given that medical reassurance and the presentation of negative results led to overestimates of the likelihood of medical explanations for symptoms in patients with somatization syndrome, the researchers recommend that doctors bear this bias in mind. To reduce it, they suggest, doctors could ask patients for summaries about what they have been told. This would make it possible to detect when patients have misremembered the likelihood of various medical explanations, and provide an opportunity to correct the situation.
Additional Information.
Please access these Web sites via the online version of this summary at
• MedlinePlus encyclopedia entry on somatization disorder
• Wikipedia page on somatization disorder (note that Wikipedia is a free online encyclopedia that anyone can edit)
• Prodigy Knowledge's information for patients on somatization and somatoform disorders
PMCID: PMC1523375  PMID: 16866576
13.  Evaluation of the effectiveness of an educational intervention for general practitioners in adolescent health care: randomised controlled trial 
BMJ : British Medical Journal  2000;320(7229):224-230.
To evaluate the effectiveness of an educational intervention in adolescent health designed for general practitioners in accordance with evidence based practice in continuing medical education.
Randomised controlled trial with baseline testing and follow up at seven and 13 months.
Local communities in metropolitan Melbourne, Australia.
108 self selected general practitioners.
A multifaceted educational programme for 2.5 hours a week over six weeks on the principles of adolescent health care followed six weeks later by a two hour session of case discussion and debriefing.
Outcome measures
Objective ratings of consultations with standardised adolescent patients recorded on videotape. Questionnaires completed by the general practitioners were used to measure their knowledge, skill, and self perceived competency, satisfaction with the programme, and self reported change in practice.
103 of 108 (95%) doctors completed all phases of the intervention and evaluation protocol. The intervention group showed significantly greater improvements in all outcomes than the control group at the seven month follow up except for the rapport and satisfaction rating by the standardised patients. 104 (96%) participants found the programme appropriate and relevant. At the 13 month follow up most improvements were sustained, the confidentiality rating by the standardised patients decreased slightly, and the objective assessment of competence further improved. 106 (98%) participants reported a change in practice attributable to the intervention.
General practitioners were willing to complete continuing medical education in adolescent health care and its evaluation. The design of the intervention using evidence based educational strategies proved an effective and quick way to achieve sustainable and large improvements in knowledge, skill, and self perceived competency.
Key messagesFirm evidence shows that the confidence, knowledge, and skills of doctors in adolescent health contribute to barriers in delivering health care to youthEvidence based strategies in continuing medical education were used in the design of a training programme to address the needs of doctors and youthThe programme covered adolescent development, consultation and communication skills, health risk screening, health promotion, risk assessment of depression and suicide, and issues in management of psychosocial health risk including interdisciplinary approaches to careMost interested doctors attended and completed the 15 hour training programme over six weeks and the evaluation protocol covering 13 monthsDoctors completing the training had substantial gains in knowledge, clinical skills, and self perceived competency than the controls; these gains were sustained at 12 months and were further improved in the objective measure of clinical competence in conducting a psychosocial interview
PMCID: PMC27271  PMID: 10642233
14.  Psychosocial Factors That Shape Patient and Carer Experiences of Dementia Diagnosis and Treatment: A Systematic Review of Qualitative Studies 
PLoS Medicine  2012;9(10):e1001331.
A systematic review of qualitative studies conducted by Frances Bunn and colleagues identifies and describes the experiences of patients and caregivers on receiving and adapting to a diagnosis of dementia.
Early diagnosis and intervention for people with dementia is increasingly considered a priority, but practitioners are concerned with the effects of earlier diagnosis and interventions on patients and caregivers. This systematic review evaluates the qualitative evidence about how people accommodate and adapt to the diagnosis of dementia and its immediate consequences, to guide practice.
Methods and Findings
We systematically reviewed qualitative studies exploring experiences of community-dwelling individuals with dementia, and their carers, around diagnosis and the transition to becoming a person with dementia. We searched PubMed, PsychINFO, Embase, CINAHL, and the British Nursing Index (all searched in May 2010 with no date restrictions; PubMed search updated in February 2012), checked reference lists, and undertook citation searches in PubMed and Google Scholar (ongoing to September 2011). We used thematic synthesis to identify key themes, commonalities, barriers to earlier diagnosis, and support identified as helpful. We identified 126 papers reporting 102 studies including a total of 3,095 participants. Three overarching themes emerged from our analysis: (1) pathways through diagnosis, including its impact on identity, roles, and relationships; (2) resolving conflicts to accommodate a diagnosis, including the acceptability of support, focusing on the present or the future, and the use or avoidance of knowledge; and (3) strategies and support to minimise the impact of dementia. Consistent barriers to diagnosis include stigma, normalisation of symptoms, and lack of knowledge. Studies report a lack of specialist support particularly post-diagnosis.
There is an extensive body of qualitative literature on the experiences of community-dwelling individuals with dementia on receiving and adapting to a diagnosis of dementia. We present a thematic analysis that could be useful to professionals working with people with dementia. We suggest that research emphasis should shift towards the development and evaluation of interventions, particularly those providing support after diagnosis.
Please see later in the article for the Editors' Summary.
Editors' Summary
Dementia is a decline in mental ability severe enough to interfere with daily life. Alzheimer disease is the most common type of dementia. People with dementia usually have problems with two or more cognitive functions—thinking, language, memory, understanding, and judgment. Dementia is rare before the age of 65, but about a quarter of people over 85 have dementia. Because more people live longer these days, the number of patients with dementia is increasing. It is estimated that today between 40 and 50 million people live with dementia worldwide. By 2050, this number is expected to triple.
One way to study what dementia means to patients and their carers (most often spouses or other family members) is through qualitative research. Qualitative research aims to develop an in-depth understanding of individuals' experiences and behavior, as well as the reasons for their feelings and actions. In qualitative studies, researchers interview patients, their families, and doctors. When the studies are published, they usually contain direct quotations from interviews as well as summaries by the scientists who designed the interviews and analyzed the responses.
Why Was This Study Done?
This study was done to better understand the experiences and attitudes of patients and their carers surrounding dementia diagnosis. It focused on patients who lived and were cared for within the community (as opposed to people living in senior care facilities or other institutions). Most cases of dementia are progressive, meaning symptoms get worse over time. Diagnosis often happens at an advanced stage of the disease, and some patients never receive a formal diagnosis. This could have many possible reasons, including unawareness or denial of symptoms by patients and people close to them. The study was also trying to understand barriers to early diagnosis and what type of support is useful for newly diagnosed patients and carers.
What Did the Researchers Do and Find?
The researchers conducted a systematic search for published qualitative research studies that reported on the experience, beliefs, feelings, and attitudes surrounding dementia diagnosis. They identified and reviewed 102 such studies. Among the quotations and summaries of the individual studies, they looked for prominent and recurring themes. They also compared and contrasted the respective experiences of patients and carers.
Overall, they found that the complexity and variety of responses to a diagnosis of dementia means that making the diagnosis and conveying it to patients and carers is challenging. Negative connotations associated with dementia, inconsistent symptoms, and not knowing enough about the signs and symptoms were commonly reported barriers to early dementia diagnosis. It was often the carer who initiated the search for help from a doctor, and among patients, willingness and readiness to receive a diagnosis varied. Being told one had dementia had a big impact on a patient's identity and often caused feelings of loss, anger, fear, and frustration. Spouses had to adjust to increasingly unequal relationships and the transition to a role as carer. The strain associated with this often caused health problems in the carers as well. On the other hand, studies examining the experience of couples often reported that they found ways to continue working together as a team.
Adjusting to a dementia diagnosis is a complex process. Initially, most patients and carers experienced conflicts, for example, between autonomy and safety, between recognizing the need for help but reluctance to accept it, or between living in the present and dealing with anxiety about and preparing for the future. As these were resolved and as the disease progressed, the attitudes of patients and carers towards dementia often became more balanced and accepting. Many patients and their families adopted strategies to cope with the impact of dementia on their lives in order to manage the disease and maintain some sort of normal life. These included practical strategies involving reminders, social strategies such as relying on family support, and emotional strategies such as using humor. At some point many patients and carers reported that they were able to adopt positive mindsets and incorporate dementia in their lives.
The studies also pointed to an urgent need for support from outside the family, both right after diagnosis and subsequently. General practitioners and family physicians have important roles in helping patients and carers to get access to information, social and psychological support, and community care. The need for information was reported to be ongoing and varied, and meeting it required a variety of sources and formats. Key needs for patients and carers mentioned in the studies include information on financial aids and entitlements early on, and continued access to supportive professionals and specialists.
What Do These Findings Mean?
Qualitative studies to date on how patients and carers respond to a diagnosis of dementia provide a fairly detailed picture of their experiences. The summary provided here should help professionals to understand better the challenges patients and carers face around the time of diagnosis as well as their immediate and evolving needs. The results also suggest that future research should focus on the development and evaluation of ways to meet those needs.
Additional Information
Please access these websites via the online version of this summary at
Wikipedia has pages on dementia and qualitative research (note that Wikipedia is a free online encyclopedia that anyone can edit)
Alzheimer Europe, an umbrella organization of 34 Alzheimer associations from 30 countries across Europe, has a page on the different approaches to research
The UK Department of Health has pages on dementia, including guidelines for carers of people with dementia
MedlinePlus also has information about dementia
PMCID: PMC3484131  PMID: 23118618
15.  Do longer consultations improve the management of psychological problems in general practice? A systematic literature review 
Psychological problems present a huge burden of illness in our community and GPs are the main providers of care. There is evidence that longer consultations in general practice are associated with improved quality of care; but this needs to be balanced against the fact that doctor time is a limited resource and longer consultations may lead to reduced access to health care.
The aim of this research was to conduct a systematic literature review to determine whether management of psychological problems in general practice is associated with an increased consultation length and to explore whether longer consultations are associated with better health outcomes for patients with psychological problems.
A search was conducted on Medline (Ovid) databases up to7 June 2006. The following search terms, were used:
general practice or primary health care (free text) or family practice (MeSH)
AND consultation length or duration (free text) or time factors (MeSH)
AND depression or psychological problems or depressed (free text).
A similar search was done in Web of Science, Pubmed, Google Scholar, and Cochrane Library and no other papers were found.
Studies were included if they contained data comparing consultation length and management or detection of psychological problems in a general practice or primary health care setting. The studies were read and categories developed to enable systematic data extraction and synthesis.
29 papers met the inclusion criteria. Consultations with a recorded diagnosis of a psychological problem were reported to be longer than those with no recorded psychological diagnosis. It is not clear if this is related to the extra time or the consultation style. GPs reported that time pressure is a major barrier to treating depression. There was some evidence that increased consultation length is associated with more accurate diagnosis of psychological problems.
Further research is needed to elucidate the factors in longer consultations that are associated with greater detection of psychological problems, and to determine the association between the detection of psychological problems and the attitude, gender, age or training of the GP and the age, gender and socioeconomic status of the patient. These are important considerations if general practice is to deal more effectively with people with psychological problems.
PMCID: PMC1890290  PMID: 17506904
16.  Effectiveness of a cognitive behavioral intervention in patients with medically unexplained symptoms: cluster randomized trial 
BMC Family Practice  2012;13:35.
Medically unexplained symptoms are an important mental health problem in primary care and generate a high cost in health services.
Cognitive behavioral therapy and psychodynamic therapy have proven effective in these patients. However, there are few studies on the effectiveness of psychosocial interventions by primary health care. The project aims to determine whether a cognitive-behavioral group intervention in patients with medically unexplained symptoms, is more effective than routine clinical practice to improve the quality of life measured by the SF-12 questionary at 12 month.
This study involves a community based cluster randomized trial in primary healthcare centres in Madrid (Spain). The number of patients required is 242 (121 in each arm), all between 18 and 65 of age with medically unexplained symptoms that had seeked medical attention in primary care at least 10 times during the previous year. The main outcome variable is the quality of life measured by the SF-12 questionnaire on Mental Healthcare. Secondary outcome variables include number of consultations, number of drug (prescriptions) and number of days of sick leave together with other prognosis and descriptive variables. Main effectiveness will be analyzed by comparing the percentage of patients that improve at least 4 points on the SF-12 questionnaire between intervention and control groups at 12 months. All statistical tests will be performed with intention to treat. Logistic regression with random effects will be used to adjust for prognostic factors. Confounding factors or factors that might alter the effect recorded will be taken into account in this analysis.
This study aims to provide more insight to address medically unexplained symptoms, highly prevalent in primary care, from a quantitative methodology. It involves intervention group conducted by previously trained nursing staff to diminish the progression to the chronicity of the symptoms, improve quality of life, and reduce frequency of medical consultations.
Trial registration
The trial was registered with, number NCT01484223 [].
PMCID: PMC3515424  PMID: 22551252
17.  Barriers to Initiating Depression Treatment in Primary Care Practice 
This study used qualitative and quantitative methods to examine the reasons primary care physicians and nurses offered for their inability to initiate guideline-concordant acute-phase care for patients with current major depression.
Two hundred thirty-nine patients with 5 or more symptoms of depression seeing 12 physicians in 6 primary care practices were randomized to the intervention arm of a trial of the effectiveness of depression treatment. Sixty-six (27.6%) patients identified as failing to meet criteria for guideline-concordant treatment 8 weeks following the index visit were the focus of this analysis.
The research team interviewed the 12 physicians and 6 nurse care managers to explore the major reasons depressed patients fail to receive guideline-concordant acute-phase care. This information was used to develop a checklist of barriers to depression care. The 12 physicians then completed the checklist for each of the 64 patients for whom he or she was the primary care provider. Physicians chose which barriers they felt applied to each patient and weighted the importance of the barrier by assigning a total of 100 points for each patient. Cluster analysis of barrier scores identified naturally occurring groups of patients with common barrier profiles.
The cluster analysis produced a 5-cluster solution with profiles characterized by patient resistance (19 patients, 30.6%), patient noncompliance with visits (15 patients, 24.2%), physician judgment overruled the guideline (12 patients, 19.3%), patient psychosocial burden (8 patients, 12.9%), and health care system problems (8 patients, 12.9%). The physicians assigned 4,707 (75.9%) of the 6,200 weighting points to patient-centered barriers. Physician-centered barriers accounted for 927 (15.0%) and system barriers accounted for 566 (9.1%) of weighting points. Twenty-eight percent of the patients not initiating guideline-concordant acute-stage care went on to receive additional care and met criteria for remission at 6 months, with no statistical difference across the 5 patient clusters.
Current interventions fail to address barriers to initiating guideline-concordant acute-stage care faced by more than a quarter of depressed primary care patients. Physicians feel that barriers arise most frequently from factors centered with the patients, their psychosocial circumstances, and their attitudes and beliefs about depression and its care. Physicians less frequently make judgments that overrule the guidelines, but do so when patients have complex illness patterns. Further descriptive and experimental studies are needed to confirm and further examine barriers to depression care. Because few untreated patients improve without acute-stage care, additional work is also needed to develop new intervention components that address these barriers.
PMCID: PMC1495010  PMID: 11841525
primary health care; depression; guidelines; family physicians
18.  What do patients with medically unexplained physical symptoms (MUPS) think? A qualitative study 
Context Medically unexplained physical symptoms (MUPS) are frequently encountered in family medicine, and lead to disability, discomfort, medicalisation, iatrogenesis and economic costs. They cause professionals to feel insecure and frustrated and patients to feel dissatisfied and misunderstood. Doctors seek answers for rather than with the patient.
Objectives This study aimed to explore patients' explanations of the medically unexplained physical symptoms that they were experiencing by eliciting their own explanations for their complaints, their associated fears, their expectations of the consultation, changes in their ideas of causality, and the therapeutic approach that they considered would be useful.
Methodology A qualitative analysis was under-taken of interviews with 15 patients with MUPS in a family medicine unit, 6 months after diagnosis.
Results Experience is crucial in construction of the meaning of symptoms and illness behaviour. Many patients identify psychosocial causes under-lying their suffering. These patients received more medication and fewer requests for diagnostic examinations than they had expected. Normalisation is a common behaviour in the clinical approach. Normalisation without explanation can be effective if an effective therapeutic relationship exists that may dispense with the need for words. Listening is the procedure most valued by patients. Diagnostic tests may denote interest in patients' problems. The clinician's flexibility should allow adaptation to the patient's phases of acceptance of the significance of their physical, emotional and social problems.
Conclusion Patients with MUPS have explanations and fears associated with their complaints. The patient comes to the consultation not because of the symptom, but because of what he or she thinks about the symptom. The therapeutic relationship, therapeutic listening, and flexibility should be the basis for approaching patients with MUPS. Patients do not always expect medication, although it is what they most often receive. Diagnostic tests, although used sparingly, can be a way to maintain and build a relationship. Drugs and tests can be a ritual statement of clinical interest in the patient and their symptoms.
PMCID: PMC3822638  PMID: 24427173
communication; physician-patient relationship; primary healthcare; qualitative research; somatoform disorders
19.  Patients' perceptions of entitlement to time in general practice consultations for depression: qualitative study 
BMJ : British Medical Journal  2002;325(7366):687.
To investigate patients' perceptions of entitlement to time in general practice consultations for depression.
Qualitative study based on interviews with patients with mild to moderate depression.
Eight general practices in the West Midlands and the regional membership of the Depression Alliance.
32 general practice patients and 30 respondents from the Depression Alliance.
An intense sense of time pressure and a self imposed rationing of time in consultations were key concerns among the interviewees. Anxiety about time affected patients' freedom to talk about their problems. Patients took upon themselves part of the responsibility for managing time in the consultation to relieve the burden they perceived their doctors to be working under. Respondents' accounts often showed a mismatch between their own sense of time entitlement and the doctors' capacity to respond flexibly and constructively in offering extended consultation time when this was necessary. Patients valued time to talk and would often have liked more, but they did not necessarily associate length of consultation with quality. The impression doctors gave in handling time in consultations sent strong messages about legitimising the patients' illness and their decision to consult.
Patients' self imposed restraint in taking up doctors' time has important consequences for the recognition and treatment of depression. Doctors need to have a greater awareness of patients' anxieties about time and should move to allay such anxieties by pre-emptive reassurance and reinforcing patients' sense of entitlement to time. Far from acting as “consumers,” patients voluntarily assume responsibility for conserving scarce resources in a health service that they regard as a collective rather than a personal resource.
What is already known on this topicA widespread concern is that pressure of work is reducing the length of general practice consultations and that doctors can't deal adequately with patients' problems in the time availableLittle is known about patients' experience of time in consultationsWhat this study addsPatients with depression feel under such acute pressure of time that they are often inhibited from fully disclosing their problems, preventing them making best use of the consultationThere is often a disparity between patients' sense of time shortage and the amount of time their doctors are willing and able to provideDoctors should be more aware of patients' anxieties about time and allay these anxieties by providing pre-emptive reassurance as a means of reinforcing patients' sense of entitlement to consultation time
PMCID: PMC126657  PMID: 12351362
20.  Computer-based quality of life questionnaires may contribute to doctor–patient interactions in oncology 
British Journal of Cancer  2002;86(1):51-59.
It is well recognized that oncologists should consider patients' quality of life and functioning when planning and delivering anticancer treatment, but a comprehensive assessment of how a patient feels requires a thorough inquiry. A standardized measurement of patients' quality of life may support clinicians in identifying important problems for discussion during the limited time of the medical consultations. The aim of this study was to assess the feasibility of computer-administered individual quality of life measurements in oncology clinics with immediate feedback of results to clinicians and to examine the impact of the information on consultations. The study employed a prospective non-randomized design with pre-test post-test within subjects comparisons and involved three medical oncologists and 28 cancer patients receiving chemotherapy. The intervention consisted of completion of quality of life questionnaires before the consultations and informing clinicians of the results. The main outcome measures were patients' perceptions of the content of baseline and intervention consultations and satisfaction with communication. A qualitative analysis of clinicians' interviews was performed. When clinicians had the quality of life results they enquired more often about daily activities (Z=−2.71, P=0.007), emotional problems (Z=−2.11, P=0.035) and work related issues (Z=−1.89, P=0.058). There was an increase in the number of issues discussed during the intervention consultation (Z=−1.89, P=0.059). Patients were highly satisfied with both consultations. The computer measurement was well accepted by patients who felt that the questionnaires were a useful tool to tell the doctors about their problems. The clinicians perceived that the quality of life data broadened the range of the clinical inquiry and helped them identify issues for discussion. Having symptoms and functional problems expressed quantitatively on a scale was useful for detection of change over time.
British Journal of Cancer (2002) 86, 51–59. DOI: 10.1038/sj/bjc/6600001
© 2002 The Cancer Research Campaign
PMCID: PMC2746549  PMID: 11857011
quality of life; individual; cancer; computer; communication
21.  Doctors accessing mental-health services: an exploratory study 
BMJ Open  2011;1(1):e000017.
To develop a more in-depth understanding of how doctors do and do not access mental healthcare from the perspectives of doctors themselves and people they have contact with through the process.
Qualitative methodology was used with semistructured interviews transcribed and analysed using Grounded Theory. Participants were 11 doctors with experience as patients of psychiatrists, four doctor and four non-doctor personal contacts (friends, family and colleagues) and eight treating psychiatrists.
Participants described experiencing unrealistic expectations and a harsh work environment with poor self care and denial and minimisation of signs of mental health difficulties. Doctor contacts described particular difficulty in responding effectively to doctor friends, family and colleagues in need of mental healthcare. In contrast, non-doctor personal contacts were more able to identify and speak about concerns but not necessarily to enable accessing adequate mental-health services.
Three areas with potential to address in supporting doctors' accessing of appropriate healthcare have been identified: (1) processes to enable doctors to maintain high standards of functioning with less use of minimisation and denial; (2) improving the quality and effectiveness of informal doctor-to-doctor conversations about mental-health issues among themselves; (3) role of non-doctor support people in identifying doctors' mental-health needs and enabling their access to mental healthcare. Further research in all these areas has the potential to contribute to improving doctors' access to appropriate mental healthcare and may be of value for the general population.
Article summary
Article focus
Doctors' accessment of adequate mental healthcare is less than optimal.
Family and community contacts have an important role in accessing mental healthcare.
Our understanding of the processes related to doctors accessing mental healthcare can be improved by exploring perspectives of doctor patients, their support people and treating psychiatrists.
Key messages
Doctors' unrealistic expectations of themselves and associated minimisation and denial of a range of self care needs may function as a barrier to accessing mental healthcare.
Addressing how doctors respond to other doctors in informal conversations indicating mental healthcare needs may be helpful in improving access to care.
Non-doctor support people may have a valuable role in enabling doctors to access appropriate mental healthcare.
All these areas need further research.
Strengths and limitations of this study
This is the first study of its kind and generates new insights in an important area.
Because of challenges in recruiting doctors with experience as patients of psychiatrists, a hard-to-reach group, the sample is small and not broadly representative.
PMCID: PMC3191385  PMID: 22021726
Child & adolescent psychiatry; adult psychiatry; physicians' health; accessing healthcare; impaired physician; mental health
22.  Normalisation of unexplained symptoms by general practitioners: a functional typology. 
BACKGROUND: Patients often present in primary care with physical symptoms that doctors cannot readily explain. The process of reassuring these patients is challenging, complex and poorly understood. AIM: To construct a typology of general practitioners' (GPs') normalising explanations, based on their effect on the process and outcome of consultations involving patients with medically unexplained symptoms. DESIGN OF STUDY: Qualitative analysis of audiotaped consultations between patients and GPs. SETTING: Seven general practices in Merseyside, United Kingdom. METHODS: Transcripts of audiotaped consultations between 21 GPs and 36 patients with medically unexplained symptoms were analysed inductively, to identify types of normalising speech used by GPs. RESULTS: Normalisation without explanation included rudimentary reassurance and the authority of a negative test result. Patients persisted in requesting explanation and elaborated or extended their symptoms, rendering somatic management more likely. Normalisation with ineffective explanation provided a tangible physical explanation for symptoms, unrelated to patient's expressed concerns. This was also counterproductive. Normalisation with effective explanation provided tangible mechanisms grounded in patients' concerns, often linking physical and psychological factors. These explanations were accepted by patients; those linking physical and psychological factors contributed to psychosocial management outcomes. CONCLUSIONS: The routine exercise of normalisation by GPs contains approaches that are ineffective and may exacerbate patients' presentation. However, it also contains types of explanation that may reduce the need for symptomatic investigation or treatment. These findings can inform the development of well-grounded educational interventions for GPs.
PMCID: PMC1314825  PMID: 15006120
23.  Psychosocial, lifestyle, and health status variables in predicting high attendance among adults. 
BACKGROUND: Increasing consultation rates have implications for the organisation of health services, the quality of care, and understanding the decision to consult. Most quantitative studies have concentrated on very high attenders--not those attending five or more times a year, who are responsible for most (60%) consultations--and have assessed neither the role of lifestyle nor patients' attitudes. AIMS: To assess associations with higher than average attendance (five or more times ayear). DESIGN OF STUDY: Postal questionnaire sent to a random sample. SETTING: Four thousand adults (one per household) from six general practices. METHOD: Data were analysed to identify predictors significantly associated with higher than average attendance. RESULTS: The response rate was 74%. Sef-reported attendance agreed with the notes (r = 0.80, likelihood ratio for a positive test = 9.4). Higher attendance was independently predicted by the severity of ill health (COOP score = 0-7, 8-9, and 10+; adjusted odds ratios= 1, 1.72, 1.91 respectively; test for trend P<0.001) and the number of reported medical problems (COOP score = 0, 1, 2, and 3+ respectively; adjusted ORs = 1, 2.05, 2.31, 4.29; P<0.001). After controlling for sociodemographic variables, medical problems, the severity of physical ill health, and other confounders, high attendance was more likely in those with medically unexplained somatic symptoms (0, 1-2, 3-5, and 6+ symptoms respectively, ORs = 1, 1.15, 1.48, and 1.62; P<0.001); health anxiety (Whitely Index = 0, 1-5, 6-7 and 8+ respectively, ORs = 1, 1.22, 1.77, and 2.78; P<0.001); and poor perceived health ('very good', 'good', 'poor' respectively, ORs = 1, 1.61, and 2.93; P<0.001). Attendance was less likely in those with negative attitudes to repeated surgery use (OR = 0.61, 95% CI = 0.47-0.78), or to doctors (Negdoc scale <18, 18-20, and 21+ respectively; ORs = 1, 0.87, 0.67; P<0.001), in those usually trying the pharmacy first (OR = 0.61, 95% CI 0.48-0.78), and those consuming alcohol (0, 1, 2, 3+ units/day respectively; ORs = 1, 0.62, 0.41, 0.29; P<0.001). Anxiety or depression predicted perceived health, unexplained symptoms, and health anxiety. CONCLUSION: Strategies to manage somatic symptoms, health anxiety, dealing with the causes of--or treating--anxiety and depression, and encouraging use of the pharmacy have the potential both to help patients manage symptoms and in the decision to consult. Sensitivity to the psychological factors contributing to the decision to consult should help doctors achieve a better shared understanding with their patients and help inform appropriate treatment strategies.
PMCID: PMC1314191  PMID: 11766871
24.  Communication barriers between older women and physicians. 
Public Health Reports  1987;102(4 Suppl):152-155.
Communication barriers between health care providers and older women are multifaceted and complex. The acute care, hospital-based orientation of the health care system tends to bypass the characteristic problems of older women who need services. Breakdown in communication originates both with the provider and the recipient. Some inherent changes of aging due to sensory loss may be a major factor. Decline in vision, hearing, and touch make communication difficult for both parties. Other deficits may occur due to disease processes such as diabetes and hypertension. A frequently ignored problem is that of the language barrier between laywomen and physicians. Use of jargon and a nonempathic interviewing style by the doctor tend to discourage free exchange of information. A third consideration is the many psychosocial factors which affect the behavior of older women and their relationship with providers. One element is the belief in negative stereotypes of women in general, and older women in particular. Fear of being labeled a "hypochondriac," a "nuisance," or a "crabby old woman" inhibits accurate reporting by patients. Attitudes toward doctors, especially male doctors, make some older women timid and fearful. Physician and patient alike may accept signs and symptoms of disease as a normal part of aging and may cause medically treatable problems to be overlooked. Finally, patient and physician priorities may differ widely. The belief by either party that wellness, prevention, and health promotion are not realistic goals for the older women may push the individual patient into premature frailty and disability which could otherwise be postponed.
PMCID: PMC1478043  PMID: 3120214
25.  Primary Care Consultations About Medically Unexplained Symptoms: How Do Patients Indicate What They Want? 
Patients with medically unexplained physical symptoms (MUS) are often thought to deny psychological needs when they consult general practitioners (GPs) and to request somatic intervention instead. We tested predictions from the contrasting theory that they are transparent in communicating their psychological and other needs.
To test predictions that what patients tell GPs when they consult about MUS is related transparently to their desire for (1) emotional support, (2) symptom explanation and (3) somatic intervention.
Prospective naturalistic study. Before consultation, patients indicated what they wanted from it using a self-report questionnaire measuring patients’ desire for: emotional support, explanation and reassurance, and physical investigation and treatment. Their speech during consultation was audio-recorded, transcribed and coded utterance-by-utterance. Multilevel regression analysis tested relationships between what patients sought and what they said.
Patients (N = 326) consulting 33 GPs about symptoms that the GPs designated as MUS.
Patients who wanted emotional support spoke more about psychosocial problems, including psychosocial causes of symptoms and their need for psychosocial help. Patients who wanted explanation and reassurance suggested more physical explanations, including diseases, but did not overtly request explanation. Patients’ wish for somatic intervention was associated only with their talk about details of such interventions and not with their requests for them.
In general, patients with medically unexplained symptoms provide many cues to their desire for emotional support. They are more indirect or guarded in communicating their desire for explanation and somatic intervention.
PMCID: PMC2659147  PMID: 19165548
primary care consultation; medically unexplained symptoms (MUS); psychological needs

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