The Development of the Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS): A Large-Scale Data Sharing Initiative

Introduction

In 2008, the Ministry of Health, Welfare and Sport commissioned the National Care for the Elderly Programme. While numerous research projects in older persons’ health care were to be conducted under this national agenda, the Programme further advocated the development of The Older Persons and Informal Caregivers Survey Minimum DataSet (TOPICS-MDS) which would be integrated into all funded research protocols. In this context, we describe TOPICS data sharing initiative (www.topics-mds.eu).

Materials and Methods

A working group drafted TOPICS-MDS prototype, which was subsequently approved by a multidisciplinary panel. Using instruments validated for older populations, information was collected on demographics, morbidity, quality of life, functional limitations, mental health, social functioning and health service utilisation. For informal caregivers, information was collected on demographics, hours of informal care and quality of life (including subjective care-related burden).

Results

Between 2010 and 2013, a total of 41 research projects contributed data to TOPICS-MDS, resulting in preliminary data available for 32,310 older persons and 3,940 informal caregivers. The majority of studies sampled were from primary care settings and inclusion criteria differed across studies.

Discussion

TOPICS-MDS is a public data repository which contains essential data to better understand health challenges experienced by older persons and informal caregivers. Such findings are relevant for countries where increasing health-related expenditure has necessitated the evaluation of contemporary health care delivery. Although open sharing of data can be difficult to achieve in practice, proactively addressing issues of data protection, conflicting data analysis requests and funding limitations during TOPICS-MDS developmental phase has fostered a data sharing culture. To date, TOPICS-MDS has been successfully incorporated into 41 research projects, thus supporting the feasibility of constructing a large (>30,000 observations), standardised dataset pooled from various study protocols with different sampling frameworks. This unique implementation strategy improves efficiency and facilitates individual-level data meta-analysis.     

Self-Report of Healthcare Utilization among Community-Dwelling Older Persons: A Prospective Cohort Study

Background

Self-reported data are often used for estimates on healthcare utilization in cost-effectiveness studies.

Objective

To analyze older adults’ self-report of healthcare utilization compared to data obtained from the general practitioners’ (GP) electronic medical record (EMR) and to study the differences in healthcare utilization between those who completed the study, those who did not respond, and those lost to follow-up.

Methods

A prospective cohort study was conducted among community-dwelling persons aged 70 years and above, without dementia and not living in a nursing home. Self-reporting questionnaires were compared to healthcare utilization data extracted from the EMR at the GP-office.

Results

Overall, 790 persons completed questionnaires at baseline, median age 75 years (IQR 72–80), 55.8% had no disabilities in (instrumental) activities of daily living. Correlations between self-report data and EMR data on healthcare utilization were substantial for ‘hospitalizations’ and ‘GP home visits’ at 12 months intraclass correlation coefficient 0.63 (95% CI; 0.58–0.68). Compared to the EMR, self-reported healthcare utilization was generally slightly over-reported. Non-respondents received more GP home visits (p<0.05). Of the participants who died or were institutionalized 62.2% received 2 or more home visits (p<0.001) and 18.9% had 2 or more hospital admissions (p<0.001) versus respectively 18.6% and 3.9% of the participants who completed the study. Of the participants lost to follow-up for other reasons 33.0% received 2 or more home visits (p<0.01) versus 18.6 of the participants who completed the study.

Conclusions

Self-report of hospitalizations and GP home visits in a broadly ‘healthy’ community-dwelling older population seems adequate and efficient. However, as people become older and more functionally impaired, collecting healthcare utilization data from the EMR should be considered to avoid measurement bias, particularly if the data will be used to support economic evaluation.     

Self-Reported Hindering Health Complaints of Community-Dwelling Older Persons: A Cross-Sectional Study

Purpose

Proactive care for community-dwelling older persons targeting self-reported hindering health complaints might prevent a decline in function. We investigated the spectrum of self-reported hindering complaints of community-dwelling older persons, the association with functional outcomes, and help-seeking behavior for these complaints.

Methods

Within the ISCOPE trial, participants (aged ≥75 years) received the ISCOPE screening questionnaire, including the open-ended question “At the moment, which health complaints limit you the most in your day-to-day life?”. After coding the answers with the ICPC-1-NL, we examined the prevalence and the association between the number and type of complaints and functional outcomes (Groningen Activities Restriction Scale, quality of life measured on Cantril’s Ladder, Mini-Mental State Examination, Geriatric Depression Scale-15, and De Jong Gierveld Loneliness Scale). Electronic patient registers were searched for the most reported complaints.

Results

7285 participants (median age: 81.0 years [IQR 77.8–85.3], 38.6% males) reported 13,524 hindering complaints (median 1, range 0–18); 32.7% reported no complaints. Participants mostly reported problems with walking/standing (22.1%), pain (20.8%) or weakness/tiredness (8.5%). These complaints were mentioned in the electronic patient registers in 28.3%, 91.3% and 55.5%, respectively. Higher numbers of hindering complaints were related to poorer scores on the number of domains with problems, Cantril’s Ladder for quality of life, Groningen Activities Restriction Scale, Geriatric Depression Scale, and De Jong Gierveld Loneliness Scale. Self-reported weakness, problems with walking/standing, visual limitations, cognitive problems, dyspnea and back complaints were associated with poorer scores on the number of domains with problems, Groningen Activities Restriction Scale, MMSE or Geriatric Depression Scale.

Conclusion

One third of the participants reported no hindering complaints. Problems with walking/standing, pain, and weakness/tiredness were most reported, but not always found in electronic patient registers. A higher number of, and specific self-reported hindering complaints, were associated with poorer scores on functional outcomes. It may be helpful for general practitioners to ask about these complaints and their influence on daily life.     

Stability Over Time in the Preferences of Older Persons for Life-Sustaining Treatment

Objective: To measure the stability of life-sustaining treatment preferences amongst older people and analyse the factors that influence stability. Design: Longitudinal cohort study. Setting: Primary care centres, Granada (Spain). Eighty-five persons age 65 years or older. Participants filled out a questionnaire with six contexts of illness (LSPQ-e). They had to decide whether or not to receive treatment. Participants completed the questionnaire at baseline and 18 months later. Results: 86 percent of the patients did not change preferences. Sex, age, marital status, hospitalisation, and self-perception of health and pain did not affect preferences. Morbidity and the death of a relative did. Conclusion: Stability of preferences of older persons in relation to end-of-life decisions seems to be more probable than instability. Some factors, such as the death of a relative or the increase in morbidity, can change preferences. These findings have implications for advance directives (ADs) and advance care planning.     

Sexual Healthcare Preferences among Gay and Bisexual Men: A Qualitative Study in San Francisco,California

Background

Research on gay and other men who have sex with men''s (G/MSM) preferences for sexual healthcare services focuses largely on HIV testing and to some extent on sexually transmitted infections (STI). This research illustrates the frequency and location of where G/MSM interface with the healthcare system, but it does not speak to why men seek care in those locations. As HIV and STI prevention strategies evolve, evidence about G/MSM''s motivations and decision-making can inform future plans to optimize models of HIV/STI prevention and primary care.

Methods

We conducted a phenomenological study of gay men''s sexual health seeking experiences, which included 32 in-depth interviews with gay and bisexual men. Interviews were transcribed verbatim and entered into Atlas.ti. We conducted a Framework Analysis.

Findings

We identified a continuum of sexual healthcare seeking practices and their associated drivers. Men differed in their preferences for separating sexual healthcare from other forms of healthcare (“fragmentation”) versus combining all care into one location (“consolidation”). Fragmentation drivers included: fear of being monitored by insurance companies, a desire to seek non-judgmental providers with expertise in sexual health, a desire for rapid HIV testing, perceiving sexual health services as more convenient than primary care services, and a lack of healthcare coverage. Consolidation drivers included: a comfortable and trusting relationship with a provider, a desire for one provider to oversee overall health and those with access to public or private health insurance.

Conclusions

Men in this study were likely to separate sexual healthcare from primary care. Based on this finding, we recommend placing new combination HIV/STI prevention interventions within sexual health clinics. Furthermore, given the evolution of the financing and delivery of healthcare services and in HIV prevention, policymakers and clinicians should consider including more primary care services within sexual healthcare settings.     

The Views of Healthcare Professionals,Drug Developers and Regulators on Information about Older People Needed for Rational Drug Prescription

Background

The ICH E7 guideline intends to improve the knowledge about medicines in geriatric patients. As a legislative document, it might not reflect the needs of healthcare professionals. This study investigated what information healthcare professionals, regulatory agencies and pharmaceutical industries consider necessary for rational drug prescribing to older individuals.

Methods and Findings

A 29-item-questionnaire was composed, considering the representation in trials, pharmacokinetics, efficacy, safety, and convenience of use in older individuals, with space for additions. Forty-three European professionals with an interest in medication for older individuals were included. In order to investigate their relevance, five items were included in a second questionnaire, with 11 control items. Median scores, differences between clinical and non-clinical respondents and response consistency were analysed. Consistency was present in 10 control items. Therefore, all items of the first questionnaire and the five additional items were analysed. Thirty-seven (86%) respondents returned the first questionnaire; 31/37 (84%) the second. Information about age-related differences in adverse events, locomotor effects, drug-disease interactions, dosing instructions, and information about the proportion of included 65+ patients was considered necessary by most respondents. Clinicians considered information significantly more important than the non-clinical respondents about the inclusion of 75+, time-until-benefit in older people, anticholinergic effects, drug-disease interactions, and convenience of use. Main study limitations are the focus on information for daily practice, while the ICH E7 guideline is a legislative document focused on market approval of a new medicine. Also, a questionnaire with a Likert scale has its limitations; this was addressed by providing space for comments.

Conclusions

This study reveals that items considered necessary are currently not included in the ICH E7 guideline. Also, clinicians’ and non-clinicians’ opinions differed significantly in 15% of the items. Therefore, all stakeholders should collaborate to improve the availability of information for the rational prescribing to older individuals.     

Income, Health Expenses, Medical Debts, and Assets of Older Persons, Report of Bureau of Research and Planning

Recent publicity in the A.M.A. News and in the New York Times regarding income, debts, and medical care expenditures of older persons referred to the 1961 Survey of Consumer Finances by the Survey Research Center of the University of Michigan, and to findings of the 1960 Census. The purpose of this Socio-Economic Report is to provide some of the details of the Michigan survey, to introduce data recently published by the Department of H.E.W., and to present certain income estimates by the Bureau of Research and Planning. The terms "spending unit" and "family unit" can be confusing unless defined.A "spending unit" consists of all related persons living together who pool their income. An individual living alone may also be a spending unit.A "family unit" consists of two or more related persons living in the same dwelling unit.     

Early Parental Loss and Self-Rated Health of Older Women and Men: A Population-Based,Multi-Country Study

Objective

Death of a parent in childhood can diminish both the nurturing that promotes healthy development, and household income. We consider, for the first time, whether this adverse childhood experience is associated with self-rated health decades later, among seniors and whether this lifelong effect is different for women and men.

Methods

The International Mobility in Aging (IMIAS) study is a prospective cohort with survey information and biophysical measures and markers from 2000 community-dwelling 65–74 year olds in Canada, Colombia, Brazil and Albania. We assessed the independent impact of death of a parent, early hunger, and witnessing violence, while controlling for current income sufficiency and other early adversities on self-rated health using baseline (2012) IMIAS data. Regressions grouping and then separating women and men were compared.

Results

Approximately 17% of the 1991 participants had experienced early parental loss. Overall 56% rated their health as good however parental loss predicted poorer adult health, as did early hunger but not witnessing violence. Disaggregated analyses revealed that the health consequences of parental loss were significant only among men (p = 0.000 versus p = 0.210 for women) whereas early hunger predicted poor self-rated health for both (p = 0.000).

Conclusion

Parental loss should be considered as a potent adverse childhood experience with life-long consequences for health. The gender difference in its effect, speaks to unidentified and modifiable traits that appear to be more common among women and that may build resilience to long-term harms of early parental death.     

Experiences of Stigma and Discrimination among Caregivers of Persons with Schizophrenia in China: A Field Survey

In China, caregivers for family members with schizophrenia play an important role in treatment and recovery but may experience stigma and discrimination simply because of their family relationship. The object of this study was to measure the degrees and correlates of stigma and discrimination experiences among this group. Four hundred twenty-seven caregivers participated in this hospital-based and cross-sectional study in Ningbo and Guangzhou, China. Data were collected by trained interviewers using fixed questionnaires. Stigma and discrimination experiences were measured by the Modified Consumer Experiences of Stigma Questionnaire (MCESQ). Caregivers’ social support was measured by the Social Support Rating Scale. Parametric analysis, nonparametric analysis and multivariate linear regression were used. The mean (SD) score of MCESQ was 2.44(0.45), 2.91(0.71) for stigma experiences and 1.97(0.37) for discrimination experiences on a five-point score (“1 = never” and “5 = very often”). Approximately 65% of caregivers reported that they tried to conceal their family members’ illness, and 71% lacked the support of friends. The experience of stigma was significantly negatively associated with the perceived social support of caregivers (standard β = −0.2,p<0.001). Caregivers who were children of the patients experienced fewer stigmas than other (standard β = −0.18, p<0.001). Urban residence (standard β = −0.12, p<0.01) and patients did not complete primary school education (standard β = −0.13, p<0.01) were negatively related with stigmas. In addition, stigma and discrimination was more experienced in Zhejiang than in Guangdong (p<0.05). In conclusion, this study performed that caregivers of people with schizophrenia in China experienced general stigmas and rare discrimination and found the relations with social support, kinship, patient’s educational level and regional differences. More interventions and supports should been given to caregivers who are lack of social support, who live in rural area and who are the patients’ parents, spouses or siblings.     

Health Behaviours and Potentially Preventable Hospitalisation: A Prospective Study of Older Australian Adults

Objective

Several studies have demonstrated the effects of health behaviours on risk of chronic diseases and mortality, but none have investigated their contribution to potentially preventable hospitalisation (PPH). We aimed to quantify the effects on risk of PPH of six health behaviours: smoking; alcohol consumption; physical activity; fruit and vegetables consumption; sitting time; and sleeping time.

Design/Setting

Prospective observational study in New South Wales, Australia.

Subjects

267,006 men and women aged 45 years and over.

Outcome Measures

PPH admissions and mortality during follow-up according to individual positive health behaviours (non-smoking, <14 alcoholic drinks per week, ≥2.5 hours of physical activity per week, ≥2 servings of fruit and 5 servings of vegetables per day, <8 hours sitting and ≥7 hours sleeping per day) and the total number of these behaviours.

Results

During an average of 3 years follow-up, 20971 (8%) participants had at least one PPH admission. After adjusting for potential confounders, participants who reported all six positive health behaviours at baseline had 46% lower risk of PPH admission (95% CI 0.48–0.61), compared to those who reported having only one of these behaviours. Based on these risk estimates, approximately 29% of PPH admissions in Australians aged 45 years and over were attributable to not adhering to the six health behaviours. Estimates were similar for acute, chronic and vaccine-preventable categories of PPH admissions.

Conclusions

Individual and combined positive health behaviours were associated with lower risk of PPH admission. These findings suggest that there is a significant opportunity to reduce PPH by promoting healthy behaviours.     

Level of Satisfaction of Older Persons with Their General Practitioner and Practice: Role of Complexity of Health Problems

Background

Satisfaction is widely used to evaluate and direct delivery of medical care; a complicated relationship exists between patient satisfaction, morbidity and age. This study investigates the relationships between complexity of health problems and level of patient satisfaction of older persons with their general practitioner (GP) and practice.

Methods and Findings

This study is embedded in the ISCOPE (Integrated Systematic Care for Older Persons) study. Enlisted patients aged ≥75 years from 59 practices received a written questionnaire to screen for complex health problems (somatic, functional, psychological and social). For 2664 randomly chosen respondents (median age 82 years; 68% female) information was collected on level of satisfaction (satisfied, neutral, dissatisfied) with their GP and general practice, and demographic and clinical characteristics including complexity of health problems. Of all participants, 4% was dissatisfied with their GP care, 59% neutral and 37% satisfied. Between these three categories no differences were observed in age, gender, country of birth or education level. The percentage of participants dissatisfied with their GP care increased from 0.4% in those with 0 problem domains to 8% in those with 4 domains, i.e. having complex health problems (p<0.001). Per additional health domain with problems, the risk of being dissatisfied increased 1.7 times (95% CI 1.4–2.14; p<0.001). This was independent of age, gender, and demographic and clinical parameters (adjusted OR 1.4, 95% CI 1.1–1.8; p = 0.021).

Conclusion

In older persons, dissatisfaction with general practice is strongly correlated with rising complexity of health problems, independent of age, demographic and clinical parameters. It remains unclear whether complexity of health problems is a patient characteristic influencing the perception of care, or whether the care is unable to handle the demands of these patients. Prospective studies are needed to investigate the causal associations between care organization, patient characteristics, indicators of quality, and patient perceptions.     

Heart Coherence: A New Tool in the Management of Stress on Professionals and Family Caregivers of Patients with Dementia

We describe a stress management intervention intended to reduce the damage and stress impact on the heart physiology and function of a group of caregivers (professional and non-professional) who work with patients with dementia. The intervention consisted in applying heart coherence techniques in a population of 72 caregivers of patients with dementia (42 professional and 29 non-professional caregivers) who had high scores in heart stress and burden tests. Six months after the training they were able to generate appropriate patterns of heart coherence, with a statistically significant decrease in their heart overload. We conclude that training in techniques of heart coherence and positive psychology had effective results on the stress management of the participant caregivers. This was a simple, inexpensive technique with lasting results. To our knowledge this is the first research in Spain studying the application of heart coherence techniques to caregivers of people with dementia.     

The State of Health in Older Adults in Japan: Trends in Disability,Chronic Medical Conditions and Mortality

Both life expectancy and healthy life expectancy in Japan have been increasing and are among the highest in the world, but the gap between them has also been widening. To examine the recent trends in old age disability, chronic medical conditions and mortality in Japan, we retrospectively analyzed three nationally representative datasets: Comprehensive Survey of Living Conditions (2001–2013), Patient Survey (1996–2011) and Vital Statistics (1995–2010). We obtained the sex- and age-stratified trends in disability rate, treatment rates of nine selected chronic medical conditions (cerebrovascular diseases, joint disorders, fractures, osteoporosis, ischemic heart disease, diabetes mellitus, hypertension, pneumonia and malignant neoplasms), total mortality rate and mortality rates from specific causes (cerebrovascular diseases, heart diseases, pneumonia and malignant neoplasms) in both sexes in four age strata (65–69, 70–74, 75–79, 80–84 years). Disability rates declined significantly in both sexes. Treatment rates of all selected medical conditions also decreased significantly, except for fractures in women and pneumonia. Both total mortality rate and cause-specific mortality rates decreased in both sexes. We concluded that the recent decline in disability rates, treatment rates of chronic medical conditions and mortality rates points toward overall improvement in health conditions in adults over the age of 65 years in Japan. Nonetheless, considering the increase in the number of older adults, the absolute number of older adults with disability or chronic medical conditions will continue to increase and challenge medical and long-term care systems.     

Knowledge,Attitudes and Practice of Desalinated Water among Professionals in Health and Water Departments in Shengsi,China: A Qualitative Study

Desalination has been considered as an essential way to solve water stress all over the world. Most of previous studies focused on its environmental impacts, energy consumption and desalination technologies rather than human health. However, the safety of desalinated water remains unclear. This study was undertaken to investigate the knowledge, attitude and practice (KAP) of the residents in an island county in eastern China to desalinated water. Seventeen people working in medical and water industries were recruited, and focus group discussion and in-depth interview were conducted among them. Our results showed that the majority of people interviewed knew the definition and local supply pattern of desalinated water, while some of them showed some concern about the safety and nutrition of desalinated water. Current drinking water standard has no specific item for desalination, so we strongly suggest issuing a standard for desalinated water.     

Social Participation and Dental Health Status among Older Japanese Adults: A Population-Based Cross-Sectional Study

Background

Although social participation is a key determinant of health among older adults, few studies have focused on the association between social participation and dental health. This study examined the associations between social participation and dental health status in community-dwelling older Japanese adults.

Methods and Findings

In 2010, self-administered postal questionnaires were distributed to all people aged ≥65 years in Iwanuma City, Japan (response rate, 59.0%). Data from 3,517 respondents were analyzed. Data on the number of remaining natural teeth, for determining the dental health status, and social participation were obtained using self-administered questionnaires. The number, type, and frequency of social activities were used to assess social participation. Social activities were political organizations or associations, industrial or professional groups, volunteer groups, senior citizens'' clubs, religious groups or associations, sports groups, neighborhood community associations, and hobby clubs. Using ordinal logistic regression, we calculated the odds ratios (OR) and 95% confidence intervals (95% CI) for an increase in category of remaining teeth based on the number, type, and frequency of social activities. Sex, age, marital status, current medical history, activity of daily living, educational attainment, and annual equivalent income were used as covariates. Of the respondents, 34.2% reported having ≥20 teeth; 27.1%, 10–19 teeth; 26.3%, 1–9 teeth; and 12.4%, edentulousness. Social participation appeared to be related with an increased likelihood of having a greater number of teeth in old age, even after adjusting for covariates (OR = 1.30, 95% CI = 1.10–1.53). Participation in sports groups, neighborhood community associations, or hobby clubs was significantly associated with having more teeth.

Conclusions

Our results suggest a protective effect of social participation on dental health. In particular, participation in sports groups, neighborhood community associations, or hobby clubs might be a strong predictor for retaining more teeth in later life.