A comparison of methods to assess nursing home residents' unmet needs

PURPOSE: This paper compares three interview methodologies to assess nursing home (NH) residents' unmet needs with regard to activity of daily living (ADL) care. DESIGN AND METHODS: The study was a survey of 70 residents across seven ADL care domains. The three types of interview methods included: (a) direct satisfaction questions about ADL care, (b) questions that compared residents' preferences about ADL care frequency or occurrence to perceptions of the ADL care delivered (discrepancy measure), and (c) open-ended questions that asked what residents wanted changed about ADL care. RESULTS:Estimates of the proportion of residents with unmet needs were significantly higher with the discrepancy and open-ended measures as compared to the direct satisfaction measures across most ADL care domains (McNemar's Test; p <.05-p <.01). IMPLICATIONS: The analysis of residents' responses to open-ended questions produced the most useful information for individualizing aspects of technical care and assessing the interpersonal quality of care, whereas the discrepancy questions elicited specific information useful for changing the frequency or occurrence of ADL care. Interview methodologies that directly ask residents questions about satisfaction with ADL care are the least useful for designing improvement interventions.     

A randomized trial of three videos that differ in the framing of information about mammography in women 40 to 49 years old

OBJECTIVE: To assess the effect of providing structured information about the benefits and harms of mammography in differing frames on women's perceptions of screening. DESIGN: Randomized control trial. SETTING: General internal medicine academic practice. PARTICIPANTS: One hundred seventy-nine women aged 35 through 49. INTERVENTION: Women received 1 of 3 5-minute videos about the benefits and harms of screening mammography in women aged 40 to 49. These videos differed only in the way the probabilities of potential outcomes were framed (positive, neutral, or negative). MEASUREMENTS AND MAIN RESULTS: We measured the change in accurate responses to questions about potential benefits and harms of mammography, and the change in the proportion of participants who perceived that the benefits of mammography were more important than the harms. Before seeing the videos, women's knowledge about the benefits and harms of mammography was inaccurate (82% responded incorrectly to all 3 knowledge questions). After seeing the videos, the proportion that answered correctly increased by 52%, 43%, and 30% for the 3 knowledge questions, respectively, but there were no differences between video frames. At baseline, most women thought the benefits of mammography outweighed the harms (79% positive frame, 80% neutral frame, and 85% negative frame). After the videos, these proportions were similar among the 3 groups (84%, 81%, 83%, P =.93). CONCLUSIONS: Women improved the accuracy of their responses to questions about the benefits and harms of mammography after seeing the videos, but this change was not affected by the framing of information. Women strongly perceived that the benefits of mammography outweighed the harms, and providing accurate information had no effect on these perceptions, regardless of how it was framed.     

Views of older adults on patient participation in medication-related decision making

BACKGROUND: Medication decision making is complex, particularly for older patients with multiple conditions for whom benefits may be uncertain and health priorities may be variable. While patient input would seem important in the face of this uncertainty and variability, little is known about older patients' views of involvement in medication decision making. OBJECTIVE: To explore the views of older adults regarding participation in medication decision making. DESIGN: Qualitative study. PARTICIPANTS: Fifty-one persons at least 65 years old who consumed at least one medication were recruited from 3 senior centers and 4 physicians' offices. APPROACH: One-on-one interviews were conducted to uncover participants' perceptions of medication-related decision making through semistructured, open-ended questions. Themes were compared according to the constant comparative method of analysis. RESULTS: The predominant theme that emerged was the variability in perceptions concerning whether it was possible or desirable for patients to participate in prescribing decisions. For some participants, involvement was limited to sharing information. Physician and system factors that were felt to facilitate or impede patient participation included communication skills, the expanding number of medications available, multiple physicians prescribing for the same patient, and a focus on treating numbers. Perceived lack of knowledge, low self-efficacy, and fear were the patient factors mentioned. Both the presence and absence of trust in the prescribing physician were seen as alternatively impeding and enhancing patient participation. Only 1 participant explicitly mentioned patient preference, a cornerstone of shared decision making. CONCLUSIONS: While evolution to greater patient involvement in medication decision making may be possible, and desirable to some older patients, findings suggest that the transition will be challenging.     

Implementation of consultative geriatric recommendations: the role of patient-primary care physician concordance

OBJECTIVES: To examine the effect on primary care physicians' implementation and their patients' adherence behaviors of patient-physician concordance about recommended geriatric health care. DESIGN: Case-series, independent interviews of patients and their physicians about their perceptions of the patients' health and the comprehensive geriatric assessment (CGA). SETTING: Community. PARTICIPANTS: Community-dwelling older patients (n = 111) who received consultative outpatient CGA and their primary care physicians. MEASUREMENTS: Concordance variables were generated using physician and patient responses to 10 questions on health- and CGA-related perceptions. An overall concordance score was generated by summing the total number of items on which patients and physicians agreed. Measures of the two dependent variables (physician implementation of and patient adherence to CGA recommendations) were by self-report. RESULTS: In multiple logistic regression analyses, overall concordance between patient and physician proved to be a significant and powerful predictor of physician implementation of (adjusted odds ratio (OR) = 2.7, 95% confidence interval (CI) = 1.6-4.6, P <.001) and patient adherence to (OR = 2.7, 95% CI = 1.7-4.2, P <.001) CGA recommendations, controlling for patient and physician gender and age, patients' functional status, duration of the patient-physician relationship, and frequency of visits in the previous year. Further analysis revealed that mutual patient-physician concordance on health-related perceptions was a significant predictor of these outcomes, whereas individual patient or physician perceptions were not. CONCLUSION: Concordance between older patients and their primary care physicians is a powerful predictor of physician implementation of and patient adherence to outpatient consultative CGA recommendations. Future research should focus on ways physicians can assess and negotiate patient-physician agreement on geriatric healthcare recommendations.     

A Qualitative Exploratory Study of Injection Drug Users' Participation in a Long-Term Epidemiological Study of HIV

An exploratory study was conducted with 15 current or former injecting drug users to gain an understanding of the motivations for and reactions to participating in ALIVE (AIDS Link to Intravenous Experiences), a longitudinal natural history study of HIV among urban drug users in Baltimore, Maryland. Semistructured qualitative interviews explored participants' perceptions of ALIVE and of its benefits and the factors that might influence accuracy of self-report. Participants described benefiting from the study in many tangible and intangible ways. ALIVE was the sole source of health care for many, as only a third of the participants had health insurance. Participants' biggest challenge in the ALIVE survey were questions related to sexuality, which were perceived as too personal or elicited shame. Results indicate the importance of qualitative research in understanding how and why people are motivated to participate in epidemiological studies and how these perceptions might relate to their responses in survey research.     

Variation of patients' views on Type 2 diabetes management over time.

AIMS: The aim of the study was to examine the relationship between participants' views about their role in diabetes treatment and their glycaemic control 3-7 years after having entered an educational intervention, and to investigate whether people's attitudes towards diabetes management change over an extended period of time. METHODS: The present study is a long-term follow-up analysis of data collected from 193 persons with Type 2 diabetes. A qualitative content analysis of three open-ended questions about participants' self-perceived role in diabetes treatment was used. The related outcome measure was haemoglobin A(1c) (HbA(1c)). RESULTS: The way people viewed their role in diabetes management affected glycaemic control. Individuals in the Disease Manager or Compliant categories had significantly lower HbA(1c) compared with those in the Disheartened category. Furthermore, in people whose attitudes towards diabetes treatment was variable, weight and age influenced why participants changed their views and thus switched categories. Paradoxically, when people changed their views, this change did not produce a change in blood glucose control, which would have been expected. CONCLUSIONS: From the health-care provider's perspective, it is important to know how the person with diabetes perceives his/her role in disease management and to determine if a change in perception would be followed by intervention to adjust glycaemic control. Consequently, individuals' perception of disease management should be incorporated in patient education programmes and routine diabetes care to enable customized care and prevent stagnation in negative roles.     

“Is it Half Full or Half Empty?” Affective Responses to Chronic Illness

Using a combined qualitative/quantitative approach, we interviewed 132 older African–Americans and whites with either osteoarthritis of the hip or knee (OAK/OAH) or ischemic heart disease (IHD) to address two questions: 1) What types of reactions to illness are expressed by this group of older adults who have OA or IHD? 2)? Are there differences in the characteristics of the respondents who respond more positively than those who respond more negatively? The responses were coded to illustrate those that reflected positive, negative, or combined (positive/negative) statements. The majority of the respondents, who were categorized as positive or combined, approached the illness experience with statements illustrating their ability to cope with their illness and adapt their lifestyles to the limitations imposed by the disease such as acceptance, feeling that others were worse off, or changing their lifestyles to adapt to their limitations. Those expressing negative reactions to their illness were fewer in number and responded with terms reflecting loss of identity, physical limitations, and other disease symptoms. The differences were more pronounced between the positive and negative groups where the latter were somewhat more likely to be African–American and female and significantly more likely to have less income, greater perceived disease severity, and more disability. We should look to the larger group in both the positive only and combined responses to explore how culture may play a role in perceptions of subjective well-being and the importance of “the local worlds of experience” experienced by both men and women, and African–Americans and whites. This study illustrates that using a simple, open-ended question that stimulates older people to narrate their reactions to having a chronic illness may allow clinicians to identify the persons most at-risk and intervene appropriately.     

The effect of question format on measured HIV/AIDS knowledge: detention center teens, high school students, and adults.

This study examines the effect of question format on HIV/AIDS knowledge assessed in teens in a detention center, public high school students, and adults. Multiple-choice items were taken from a Red Cross questionnaire and were transformed into open-ended and true/false/don't know formats. Each respondent received an open-ended and a structured version of the test (consisting of multiple-choice and true/false/don't know items). Format effects varied by group and order of presentation: High school students and adults performed better on the open-ended questions if they had answered the structured versions first-suggesting that the structured questions provided these respondents with unintended cues. Detention center youths did not benefit from having answered the structured items, and scored especially low on the open-ended questions. However, they did almost as well as the other groups with the true/false/don't know format. Implications are discussed for measuring HIV/AIDS knowledge and evaluating educational programs for different target audiences.     

What do family members notice following an intervention to improve mobility and incontinence care for nursing home residents? An analysis of open-ended comments

PURPOSE: The purpose of this study was to evaluate the sensitivity of family members' responses to open-ended interview questions about an intervention to improve incontinence and mobility care for their relative in a nursing home. DESIGN AND METHODS: The study was a randomized, controlled intervention trial with incontinent nursing home residents (N = 145), wherein research staff provided toileting and walking assistance of sufficient intensity to significantly improve continence and mobility outcomes in the treatment group. Interviewers posed open-ended interview questions to family members after 8 weeks of intervention to assess if they noticed a difference in care. RESULTS: Family responses to open-ended questions showed that, compared to the control group, the intervention group noticed significant overall improvement in incontinence and mobility care and in residents' outcomes in mobility. IMPLICATIONS: Families' responses to open-ended questions were sensitive to improvements in incontinence and mobility care and may provide evidence for important care quality differences that would be missed if only direct satisfaction and discrepancy-based closed-ended questions were asked.     

Health status versus quality of life in older patients: does the distinction matter?

PURPOSE: Although health-related quality of life in older people is generally assessed by measuring specific domains of health status, such as activities of daily living or pain, the association between health-status measures and patients' perceptions of their quality of life is not clear. Indeed, it is controversial whether these health-status measures should be considered measures of quality of life at all. Our objective was to determine the association between health-status measures and older patients' perceptions of their global quality of life. SUBJECTS AND METHODS: We performed a cross-sectional study of 493 cognitively intact patients 80 years of age and older, interviewed 2 months after a hospitalization. We measured patients' self-assessed global quality of life and four domains of health status: physical capacity, limitations in performing activities of daily living, psychological distress, and pain. RESULTS: Each of the four scales was significantly correlated with patients' global perceptions of their quality of life (P <0.001). The ability of the health-status scales to discriminate between patients with differing global quality of life was generally good, especially for the physical capacity (c statistic = 0.72) and psychological distress scales (c statistic = 0.70). However, for a substantial minority of patients, scores on the health-status scales did not accurately reflect their global quality of life. For example, global quality of life was described as fair or poor by 15% of patients with the highest (best tertile) physical capacity scores, 25% of patients who were independent in all activities of daily living, 21% of patients with the least psychological distress (best tertile), and by 30% with no pain symptoms. Similarly, global quality of life was described as good or better by 43% of patients with the worst physical capacity (worst tertile), 49% of patients who were dependent in at least two activities of daily living, 47% of patients with the most psychological distress (worst tertile), and 51% of patients with severe pain. CONCLUSION: On average, health status is a reasonable indicator of global quality of life for groups of older patients with recent illness. However, disagreement between patients' reported health status and their perceptions of their global quality of life was common. Therefore, assumptions about the overall quality of life of individual patients should not be based on measures of their health status alone.     

Measuring met and unmet need of drug misusers: integration of quantitative and qualitative data

This paper reports on the combination of qualitative and quantitative methods which were used to record the attitudes to, and perceptions of, drug treatment services by current, ex-, and potential clients in south-east London. Three research instruments were employed: a structured current client satisfaction survey (n = 333); a questionnaire which included open-ended questions, administered to drug users not currently in treatment (n = 88), and focus groups for young drug users not in treatment (n = 14), women in treatment (n = 7) and men in treatment (n = 11). The data thus collected were used to construct a picture of local met and unmet need and obstacles to the uptake of health care, which is supported by more than one perspective, and which can reasonably be used as the basis for the planning of local health care purchase. Three major concerns were revealed by the data: the inadequacy of existing GP drug services; the deterrent effect of long waiting lists for methadone treatment, and the role of treatment services in relation to those drug users who acknowledge that their drug use is problematic, but believe that treatment services have nothing to offer them.     

Teaching home care for ventilator-dependent patients: the patients' perception

An increasing number of ventilator-dependent patients are being transferred from hospitals to their homes. Discharge teaching has been based on health professionals' perception of what patients need to know and how they can learn best. In this study we asked ventilator-dependent patients who were living at home (N = 13) to complete a questionnaire concerning their perceptions of ideal discharge teaching. Most respondents believed that teaching should occur (1) at the bedside, (2) with one or two family members, (3) with only the team member doing the teaching, (4) for a 30-minute session, (5) using demonstration technique. Subjects thought that teaching regarding the lung disease process was less important than other content. The patients' criteria for learning mostly agree with those identified by health care professionals, and can be met easily in most settings.     

Recall in older cancer patients: measuring memory for medical information

PURPOSE: Remembering medical treatment information may be particularly taxing for older cancer patients, but to our knowledge this ability has never been assessed in this specific age group only. Our purpose in this study was to investigate older cancer patients' recall of information after patient education preceding chemotherapy. DESIGN AND METHODS: We constructed a recall questionnaire consisting of multiple-choice questions, completion items, and open-ended questions related to information about treatment and recommendations on how to handle side effects. Immediately after a nursing consultation preceding chemotherapy treatment, 69 older patients (M = 71.8 years, SD = 4.1) completed the questionnaire. We checked recall against the actual communication in video recordings of the consultations. RESULTS: On average, 82.2 items were discussed during the consultations. The mean percentage of information recalled correctly was 23.2% for open-ended questions, 68.0% for completion items, and 80.2% for multiple-choice questions. IMPLICATIONS: Older cancer patients are confronted with a lot of information. Recall of information strongly depended on question format; especially active reproduction appeared to be poor. To improve treatment outcomes, it is important that cancer patients are able to actively retrieve knowledge about how to prevent and recognize adverse side effects and that this is checked by the health professional. We make suggestions on how to make information more memorable for older cancer patients.     

How are patients’ specific ambulatory care experiences related to trust, satisfaction, and considering changing physicians?

CONTEXT: Few data are available regarding the consequences of patients' problems with interpersonal aspects of medical care. OBJECTIVE: To assess the relationships between outpatient problem experiences and patients' trust in their physicians, ratings of their physicians, and consideration of changing physicians. We classified as problem experiences patients' reports that their physician does not always 1) give them enough time to explain the reason for the visit, 2) give answers to questions that are understandable, 3) take enough time to answer questions, 4) ask about how their family or living situation affects their health, 5) give as much medical information as they want, or 6) involve them in decisions as much as they want. DESIGN: Telephone survey during 1997. PARTICIPANTS: Patients (N=2,052; 58% response) insured by a large national health insurer. MEASUREMENTS: Patient trust, overall ratings of physicians, and having considered changing physicians. RESULTS: Most patients (78%) reported at least 1 problem experience. In multivariable analyses, each problem experience was independently associated with lower trust (all P <.001) and 5 of 6 with lower overall ratings (P <.001). Three problem experiences were independently related to considering changing physicians: physicians not always giving answers to questions that are understandable (odds ratio [OR], 2.0; 95% confidence interval [CI], 1.3 to 3.0), not always taking enough time to answer questions (OR, 3.3; 95% CI, 2.2 to 5.2), and not always giving enough medical information (OR, 4.0; 95% CI, 2.4 to 6.6). CONCLUSIONS: Problem experiences in the ambulatory setting are strongly related to lower trust. Several are also associated with lower overall ratings and with considering changing physicians, particularly problems related to communication of health information. Efforts to improve patients' experiences may promote more trusting relationships and greater continuity and therefore should be a priority for physicians, educators, and health care organizations.     

Early treatment of women with alcohol addiction (EWA): a comprehensive evaluation and outcome study. I. Patterns of psychiatric comorbidity at intake

This paper deals with psychiatric comorbidity among 60 women problem drinkers treated in a specialized women-only treatment programme (EWA) at Karolinska Hospital, Stockholm, Sweden. The programme attracts women who have not been previously treated for alcohol problems. The methods used were structured interviews (SCID-I and SCID-II) applied at least 10 days after the start of treatment. All but two of the women had a definite alcohol dependence according to the DSM-III-R, and a majority (60%) also fulfilled the criteria for at least one psychiatric disorder during their lifetime. However, only 23% had a personality disorder (PD), and all subjects with a PD also had at least one Axis I disorder. The most common disorders were mood disorders (48%) and anxiety disorders (38%). However, alcohol dependence developed without definite pre-existing psychiatric disorders among a substantial proportion of the women (40%). It remains to be seen whether and how psychiatric disturbances among female problem drinkers affect treatment compliance and long-term outcome.