What patients want

Objective

Although most health care professionals im- or explicitly will assume that they tend to use patient-centered communication strategies, there are reasons to believe that this might not always be a valid assumption. In everyday practice, professionals’ own value system is often the dominant steering guide. This Special Issue aims to bring together ongoing research and reflections about the quality of health care communication from the patients’ own perspective. In short: what do patients want?

Methods

This introduction presents a comprehensive overview of the papers in the special issue of Patient Education and Counseling within a framework that describes the collected papers according to the six functions of medical consultations, taking account of the studies’ applied methodologies: quantitative versus qualitative.

Results

Two functions of the medical consultation are strongly represented in the collected papers on the quality of communication from the patients’ perspective: ‘fostering the relationship’ and ‘information giving’. There is a remarkable difference between the qualiative and quantitative studies, showing that if patients are not limited to prestructured questionnaires but completely free to express themselves, they tend to focus on ‘fostering the relationship’ with an emphasis on personal attention, warmth and empathy.

Conclusions

Patients’ needs and preferences for personalized and humane medical care cannot be overestimated. For the rest, patient diversity is striking, showing the limited usefulness of general communication guidelines for the other five functions of the medical consultation. Researchers should be aware that patients’ views might be different dependent on the applied methodologies.     

Readability,suitability and comprehensibility in patient education materials for Swedish patients with colorectal cancer undergoing elective surgery: A mixed method design

Objective

To characterize education materials provided to patients undergoing colorectal cancer surgery to gain a better understanding of how to design readable, suitable, comprehensible materials.

Method

Mixed method design. Deductive quantitative analysis using a validated suitability and comprehensibility assessment instrument (SAM + CAM) was applied to patient education materials from 27 Swedish hospitals, supplemented by language technology analysis and deductive and inductive analysis of data from focus groups involving 15 former patients.

Results

Of 125 patient education materials used during the colorectal cancer surgery process, 13.6% were rated ‘not suitable’, 76.8% ‘adequate’ and 9.6% ‘superior’. Professionally developed stoma care brochures were rated ‘superior’ and 44% of discharge brochures were ‘not suitable’. Language technology analysis showed that up to 29% of materials were difficult to comprehend. Focus group analysis revealed additional areas that needed to be included in patient education materials: general and personal care, personal implications, internet, significant others, accessibility to healthcare, usability, trustworthiness and patient support groups.

Conclusion

Most of the patient education materials were rated ‘adequate’ but did not meet the information needs of patients entirely. Discharge brochures particularly require improvement.

Practice implications

Using patients’ knowledge and integrating manual and automated methods could result in more appropriate patient education materials.     

Patients’ explanations for unsuccessful weight loss after laparoscopic adjustable gastric banding (LAGB)

Objective

Not all morbidly obese patients attain sufficient weight loss after laparoscopic adjustable gastric banding (LAGB). We examined patients’ explanations for unsuccessful weight loss and self-awareness regarding food intake.

Methods

Interviews with 11 patients (10 female/1 male; mean age 46 years) with unsuccessful weight loss were transcribed and analyzed with the MAXqda2 program.

Results

Interviewees were disappointed with the postoperative outcome. Some showed no awareness of their own role, while others were inefficacious to continue the actions needed to maintain weight loss, especially during times of stress. Typical statements that distinguished interviewees were: ‘It didn’t work out’, ‘I don’t care anymore’, ‘I know I have to do it’, ‘I know I can do it’.

Conclusion

Some patients with unsuccessful weight loss after LAGB are insufficiently aware that their own effort is needed to maintain weight loss. Others have self-awareness, but find it difficult to turn awareness into action.

Practice implications

This group could perhaps be helped by tailoring postoperative guidance to the stage of change of an individual patient. Counseling could include increasing awareness of the need to self-control eating and offering assistance to turn intentions into action and to deal with stress, emotions and physical problems.     

Effectiveness of the ‘availability,current issues and anticipation’ (ACA) training programme for general practice trainees on communication with palliative care patients: A controlled trial

Objective

This study aimed to evaluate the effectiveness of a new palliative care ‘availability, current issues and anticipation’ (ACA) training programme to improve communication skills of general practice trainees (GPTs).

Methods

In a controlled trial among third-year GPTs, we videotaped one 20-min consultation between each GPT and a simulated palliative care patient at baseline and at six months follow-up. We measured the number of issues discussed and the quality of communication skills and analysed between-group differences using linear mixed models and logistic regression.

Results

Fifty-four GPTs were assigned to the intervention and 64 to the control group. We found no effect of the programme on the number of issues discussed or on the quality of GPT communicative behaviour. GPTs infrequently addressed ‘spiritual/existential issues’ and ‘unfinished business’. In a selection of the consultations, simulated patients brought up more issues than the GPTs did.

Conclusion

The ACA training programme was not effective in the way it was carried out and evaluated in this trial.

Practice implications

The ACA programme should focus on the issues that scored low in this trial. Future research on GPT–patient communication in palliative care should consider using real patients in a series of consultations to evaluate effectiveness.     

Developing a model of decision-making about complementary therapy use for patients with cancer: A qualitative study

Objective

To improve our understanding of patient participation in health care consultations and decision-making by exploring a consultation that lies at the interface between mainstream care and complementary therapies.

Methods

Thirty-four holistic consultations were observed at centres offering complementary therapies for cancer, followed by interviews with patients and focus groups with professionals.

Results

A model of decision-making about complementary therapy use emerged from the data: ‘Advice: Assessor led decision’, ‘Confirmation: Joint decision’, ‘Access: Patient-led decision’ and ‘Informed: Patient-led decision’. Decision-making style was contingent on identifiable communication strategies in the preceding information-sharing and discussion phases of the consultation.

Conclusion

This study confirms the importance of gauging patients’ preferences for level of participation in decision-making. Models of consultations are generally based on the assumption that a greater degree of patient participation is a good thing that access to information and decision-making power is sought by all patients. Data from this study suggest that, in this context at least, this is not necessarily the case. The study also stresses the dynamic nature of the consultation, in which roles are fluid rather than fixed.

Practice implications

Insight were gained into professionals’ communication strategies and patients’ role preferences in decision-making, which may be applicable more widely.     

Validation of a theory-based instrument measuring patient-reported psychosocial care by physicians using a multiple indicators and multiple causes model

Objective

The purpose of this study is the further validation of an existing instrument for measuring patient-reported psychosocial care by physicians using a multiple indicators and multiple causes model, to estimate the association of construct values with its antecedent causes as well as consequences simultaneously.

Methods

A written questionnaire was answered by 2470 patients (response rate, 52.9%) who were treated in the year 2000 in six hospitals in Germany.

Results

Estimation of the multiple indicators and multiple causes model produced an acceptable model fit (Tucker–Lewis index = .940, comparative fit index = .943 and root mean square error of approximation = .060). The latent construct of psychosocial care by physicians predicted the construct of patient satisfaction by 83% (beta = 0.91), trust in physicians by 85% (beta = .92), and image of the hospital by 69% (beta = .83).

Conclusion

Based on our multiple indicators and multiple causes model instrument's reported psychometric characteristics and on initial validity indicators, psychosocial care by physicians can be regarded as an adequate measure for further use in outcome research.

Practice Implications

The scale psychosocial care by physicians can be used as a valid instrument in regard to quality assessment and assurance.     

Validation of a patient-centered culturally sensitive health care provider inventory using a national sample of adult patients

Objective

The Tucker-Culturally Sensitive Health Care Provider Inventory – Patient Form (T-CSHCPI-PF) is an inventory for culturally diverse patients to evaluate provider cultural sensitivity in the health care process. The T-CSHCPI-PF is novel in that it assesses provider cultural sensitivity as defined by culturally diverse patients. The purpose of the present study was to determine the factor structure and internal consistency reliability of the T-CSHCPI-PF.

Method

A sample of 1648 adult patients was recruited by staff at 67 health care sites across the United States. These patients anonymously completed the T-CSHCPI-PF, a demographic data questionnaire, and a patient satisfaction questionnaire.

Results

Confirmatory factor analyses of the TCSHCPI-PF revealed that it has three factors with high internal consistency and validity.

Conclusion

It is concluded that the T-CSHCPI-PF is a psychometrically strong and useful inventory for assessing the cultural sensitivity of health care providers.

Practical implications

The T-CSHCPI-PF may be a useful inventory for obtaining patients’ feedback on their providers’ cultural sensitivity and for assessing the effectiveness of trainings to promote patient-centered cultural sensitivity among providers.     

Cancer care at the hospital–community interface: Perspectives of patients from different cultural and ethnic groups

Objective

To examine perceptions of cancer patients from different cultural and ethnic groups regarding the quality of their care at the hospital–community interface.

Methods

Cross-sectional study of cancer patients from a large tertiary center in Israel. Patients were surveyed on the quality of their primary-care and on their transition from the hospital. Regression analyses were used to examine differences among Hebrew-, Russian-, and Arabic-speaking patients in their assessment of six primary-care domains and of their care transition process.

Results

422 patients completed the survey. Russian speakers gave the lowest and Arabic speakers the highest ratings for all primary care domains. Arabic speakers also gave higher ratings for their care transition process than the other two groups. Minority patients’ primary-care physicians were significantly more likely than Hebrew speakers’ physicians to facilitate the hospital transition process by reviewing the discharge recommendations.

Conclusions

Cancer patients from different ethnic groups differ in their primary-care experience and their perceptions of their hospital to community transition. Primary-care physicians serve as facilitators of care transitions by discussing discharge recommendations with their minority patients.

Practice implications

Reviewing the discharge recommendations with the patient at the post-discharge primary-care visit is an important contributor to high quality transitional care.     

Older cancer patients’ information and communication needs: What they want is what they get?

Objective

To evaluate what information and communication aspects older cancer patients (≥65) consider important in preparing for chemotherapy treatment (CT), the extent to which this corresponds with what oncology nurses consider important, and the extent to which nurses attend to these aspects during real-life educational visits in oncology.

Methods

The QUOTE^chemo was used to have patients (n = 116) and nurses (n = 123) rate the importance of 66 aspects of patient education. Subsequently, the implementation of these 66 aspects during videotaped nursing visits (n = 155) with older cancer patients receiving CT for the first time was examined.

Results

Older cancer patients attached most importance to ‘treatment-related information’, ‘rehabilitation information’, ‘affective communication’ and discussing ‘realistic expectations’. Nurses placed great importance to almost all aspects except to discussing ‘realistic expectations’. Discrepancies were found between expressed importance and the actual performance during the videotaped consultations, particularly in discussing realistic expectations, coping information, interpersonal communication, and tailored communication.

Conclusion

Results pointed to aspects that need improvement to ensure high quality patient education tailored to the patients’ needs.

Practice implications

To make sure older cancer patients’ needs are met, more attention should be paid to the development of interventions supporting both needs assessment and fulfillment.     

Physician's gender,communication style,patient preferences and patient satisfaction in gynecology and obstetrics: A systematic review

Objective

Review of studies published in the last 10 years about women seeking gynecological- or obstetrical care and physician's gender in relation to patient preferences, differences in communication style and patient satisfaction.

Methods

Studies were identified by searching the online databases PubMed, PsycINFO, Embase and the Cochrane Library. The search strategies ‘gender’; ‘obstetrics’ and ‘gynecology’ were combined with ‘communication’; ‘physician–patient relations’; ‘patient preference’ and ‘patient satisfaction’.

Results

After screening title and abstract, evaluating full text and quality assessment, 9 articles were included in this review. Most patients preferred a female rather than a male gynecologist–obstetrician. This was partly explained by a more patient-centered communication style used by female gynecologists–obstetricians. Also experience and clinical competence were important factors in choosing a gynecologist–obstetrician. It was not clear whether patient's age or ethnicity influenced patients gender preference. Patient satisfaction increased when gynecologists–obstetricians used a patient-centered communication style.

Conclusion

Preference for a female gynecologist–obstetrician might be explained by a more patient-centered communication style used by female gynecologists–obstetricians. Using a patient-centered communication style increases patient satisfaction.

Practice implications

To increase patient satisfaction, gynecologists–obstetricians should learn to integrate patient-centered communication style into the consultation.     

A qualitative study of patient choices in using emergency health care for long-term conditions: The importance of candidacy and recursivity

Objective

We aimed to explore how patients with long-term conditions choose between available healthcare options during a health crisis.

Methods

Patients in North-West England with one or more of four long-term conditions were invited to take part in a questionnaire cohort study of healthcare use. Semi-structured interviews were conducted with a sub-sample of fifty consenting patients. Data were analysed qualitatively, using a framework approach.

Results

Patients described using emergency care only in response to perceived urgent need. Their judgements about urgency of need, and their choices about what services to use were guided by previous experiences of care, particularly how accessible services were and the perceived expertise of practitioners.

Conclusion

Recursivity and candidacy provide a framework for understanding patient decision-making around emergency care use. Patients were knowledgeable and discriminating users of services, drawing on experiential knowledge of healthcare to choose between services. Their sense of ‘candidacy’ for specific emergency care services, was recursively shaped by previous experiences.

Practice implications

Strategies that emphasise the need to educate patients about healthcare services use alone are unlikely to change care-seeking behaviour. Practitioners need to modify care experiences that recursively shape patients’ judgements of candidacy and their perceptions of accessible expertise in alternative services.     

‘What they’re not telling you’: A new scale to measure grandparents’ information needs when their grandchild has cancer

Objective

To determine the information needs and preferences of grandparents of children with cancer, to identify clinically useful predictors of high information need, and to develop the first validated scale to assess grandparents’ information needs regarding their grandchild's cancer.

Methods

Grandparents of children with cancer completed a questionnaire, including a newly developed instrument to measure information needs.

Results

Eighty-seven grandparents participated (mean age 65.02 years, range 46–81, 31% male). Grandparents’ information needs were high, especially among young and paternal grandparents. Grandparents’ greatest need was for information pertaining to their grandchild's chance of survival (81.6% reported “high need”), possible consequences of the child's cancer (81.6%), and phases of their treatment (72.4%). Ninety-three percent endorsed the development of a grandparents’ booklet, distributed at diagnosis and available online.

Conclusions

Grandparents of children with cancer desire more information for their own reassurance, to reduce their reliance on ‘second-hand’ information from their grandchild's parents and to improve the support they provide their families. Grandparents strongly endorse the development of grandparent-targeted educational resources.

Practice implications

Administration of this short, 15-item questionnaire can help staff identify the information needs of grandparents. Findings will inform the development of evidence-based resources for this important (but oft-neglected) population.     

Validity aspects of the patient feedback questionnaire on consultation skills (PFC), a promising learning instrument in medical education

Objective

A focus on the communicator competency is considered to be an important requirement to help physicians to acquire consultation skills. A feedback questionnaire, in which patients assess consultation skills might be a useful learning tool. An existing questionnaire on patient perception of patient-centeredness (PPPC) was adapted to cover the ‘communicator’ items in the competency profile. We assessed the face and content validity, the construct validity and the internal consistency of this new patient feedback on consultation skills (PFC) questionnaire.

Methods

We assessed the face validity of the PFC by interviewing patients and general practice trainees (GPTs) during the developmental process. The content validity was determined by experts (n = 10). First-year GPTs (23) collected 222 PFCs, from which the data were used to assess the construct validity (factor analysis), internal consistency, response rates and ceiling effects.

Results

The PFC adequately covers the corresponding ‘communicator’ competency (face and content validity). Factor analysis showed a one-dimensional construct. The internal consistency was high (Cronbach's alpha 0.89). For the single items, the response rate varied from 89.2% to 100%; the maximum score (ceiling effect) varied from 45.5% to 89.2%.

Conclusion

The PFC appears to be a valid, internally consistent instrument.

Practical implications

The PFC may be a valuable learning tool with which GPTs, other physicians and medical students can acquire feedback from patients regarding their consultation skills.     

Option Grids: Shared decision making made easier

Objective

To describe the exploratory use of short decision support tools for patients, called Option Grids. Option Grids are summary tables, using one side of paper to enable rapid comparisons of options, using questions that patients frequently ask (FAQs) and designed for face-to-face clinical encounters. To date, most evidence about ‘patient decision aids’ has been based on tools with high content levels, designed for patients to use independently, either before or after visits.

Methods

We studied the use of Option Grids in a quality improvement project, collecting field notes and conducting interviews with clinical teams.

Results

In the ‘Making Good Decisions in Collaboration’ (MAGIC) program, clinicians found that using Option Grids made it easier to explain the existence of options and reported a ‘handover’ effect, where patient involvement in decision making was enhanced.

Conclusion

Option Grids made options more visible and clinicians found it easier to undertake shared decision making when these tools were available. Used in a collaborative way, they enhance patients’ confidence and voice, increasing their involvement in collaborative dialogs.

Practice implications

Further work to confirm these preliminary findings is required, to measure processes and to assess whether these tools have similar impact in other clinical settings.     

Satisfaction with communication in ICU patients and relatives: comparisons with medical staffs' expectations and the relationship with psychological distress

Objective

To study intensive care unit (ICU) patients’ and relatives’ satisfaction in regard to communication with medical staff (nurses and physicians), perceived support, environmental strain and their psychological distress. Further, to compare this with expectations of the medical staff.

Methods

Cross-sectional study, 4–6 weeks post-ICU discharge. Respondents to the questionnaire were: 255 (63%) patients, 354 (82%) relatives and 145 (74%) medical staff. Degree of satisfaction and distress were measured on a five-point Likert-scale (0 = low to 4 = high).

Results

The mean score for patient satisfaction with communication was 3.0 (95%CI 2.9–3.1) and for relatives 3.4 (3.3–3.5). This was significantly higher than expected by the staff for patients 2.5 (2.4–2.6) and relatives 2.8 (2.7–2.9), both p < 0.001. Relatives’ degree of psychological distress, 2.5 (2.4–2.6) was significantly higher than for patients’, 1.6 (1.5–1.7), but was significantly lower than expected by the staff, 2.9 (2.8–3.0) and 2.7 (2.6–2.8) respectively, both p < 0.001.

Conclusion

Patients and relatives were more satisfied with the communication than expected by the staff. The staff overestimated the patients’ and relatives’ psychological distress. Relatives report more psychological distress symptoms post-ICU discharge compared to the patients.

Practice implications

Medical staff is aware of psychological distress in ICU patients and relatives and effort to reduce this during ICU stay and afterwards should be implemented.     

A secondary analysis of the moderating effects of depression and multimorbidity on the effectiveness of a chronic disease self-management programme

Objective

Patients accessing the chronic disease self-management programme (CDSMP) often report multiple long-term conditions (multimorbidity). Although multimorbidity often predicts poor outcomes, CDSMP effectiveness may be enhanced in multimorbidity via synergies between self-management for different conditions. This study assessed whether CDSMP benefits varied by patterns of multimorbidity.

Methods

The study was based on a secondary analysis of an RCT. Patients with long-term conditions (n = 629) were randomised to CDSMP or wait-list and completed baseline and 6 month assessments. We identified four multimorbidity groups: (1) single physical condition; (2) multiple physical conditions; (3) single physical condition plus ‘probable depression’; (4) multiple physical conditions plus ‘probable depression’.

Results

Multimorbidity group significantly moderated the effect of CDSMP on vitality, health-related quality of life, and mental well-being, with the greatest benefit found for patients with multiple physical conditions plus ‘probable depression’.

Conclusion

The coexistence of depression and multiple physical conditions is associated with increased illness burden, but such patients benefit more from the CDSMP. The mechanisms underlying this effect are unclear, but it does not appear to be through self-management or self-efficacy.

Practice implications

The presence of multimorbidity in combination with depression may be a useful criteria for referral to the CDSMP.     

Communication-related behavior change techniques used in face-to-face lifestyle interventions in primary care: A systematic review of the literature

Objectives

To systematically review the literature on the relative effectiveness of face-to-face communication-related behavior change techniques (BCTs) provided in primary care by either physicians or nurses to intervene on patients’ lifestyle behavior.

Methods

PubMed, EMBASE, PsychINFO, CINAHL and The Cochrane Library were searched for studies published before October 2010. Fifty studies were included and assessed on methodological quality.

Results

Twenty-eight studies reported significantly favorable health outcomes following communication-related BCTs. In these studies, ‘behavioral counseling’ was most frequently used (15 times), followed by motivational interviewing (eight times), education and advice (both seven times). Physicians and nurses seem equally capable of providing face-to-face communication-related BCTs in primary care.

Conclusion

Behavioral counseling, motivational interviewing, education and advice all seem effective communication-related BCTs. However, BCTs were also found in less successful studies. Furthermore, based on existing literature, one primary care profession does not seem better equipped than the other to provide face-to-face communication-related BCTs.

Practice implications

There is evidence that behavioral counseling, motivational interviewing, education and advice can be used as effective communication-related BCTs by physicians and nurses. However, further research is needed to examine the underlying working mechanisms of communication-related BCTs, and whether they meet the requirements of patients and primary care providers.     

End-of-life expectations and experiences among nursing home patients and their relatives—A synthesis of qualitative studies

Objective

Synthesize research about patients’ and relatives’ expectations and experiences on how doctors can improve end-of-life care in nursing homes.

Methods

We systematically searched qualitative studies in English in seven databases (Medline, Embase, PsycINFO, CINAHL, Ageline, Cochrane Systematic Reviews and Cochrane Trials). We included 14 publications in the analysis with meta-ethnography.

Results

Patients and families emphasized the importance of health personnel anticipating illness trajectories and recognizing the information and palliation needed. Family members who became proxy decision-makers reported uncertainty and distress when guidance from health personnel was lacking. They worried about staff shortage and emphasized doctor availability. Relatives and health personnel seldom recognized patients’ ability to consent, and patients’ preferences were not always recognized.

Conclusion

Nursing home patients and their relatives wanted doctors more involved in end-of-life care. They expected doctors to acknowledge their preferences and provide guidance and symptom relief.

Practice implications

High-quality end-of-life care in nursing homes relies on organization, funding and skilled staff, including available doctors who are able to recognize illness trajectories and perform individualized Advance Care Planning.     

The role of disease management programs in the health behavior of chronically ill patients

Objective

Investigate the effects of disease management program (DMP) implementation on physical activity, smoking, and physical quality of life among chronically ill patients.

Methods

This study used a mixed-methods approach involving qualitative (35 interviews with project managers) and quantitative (survey of patients from 18 DMPs) data collection. Questionnaire response rates were 51% (2010; 2619/5108) at T0 and 47% (2011; 2191/4693) at T1.

Results

Physical activity and the percentage of smokers improved significantly over time, whereas physical quality of life declined. After adjusting for patients’ physical quality of life at T0, age, educational level, marital status, and gender, physical activity at T0 (p < 0.01), changes in physical activity (p < 0.001), and percentage of smokers at T0 (p < 0.05) predicted physical quality of life at T1. Project managers reported that DMPs improved patient–professional interaction. The ability to set more concrete targets improved patients’ health behaviors.

Conclusions

DMPs appear to improve physical activity among chronically ill patients over time. Furthermore, (changes in) health behavior are important for the physical quality of life of chronically ill patients.

Practice implications

Redesigning care systems and implementing DMPs based on the chronic care model may improve health behavior among chronically ill patients.     

‘I beg your pardon?’ Nurses’ experiences in facilitating doctors’ learning process – An interview study

Objective

Working alongside specialized palliative care nurses brings about learning opportunities for general practitioners. The views of these nurses toward their role as facilitator of learning is unknown. The aim of this study is to clarify the views and preferences of these nurses toward their role as facilitator of physicians’ learning.

Methods

Qualitative study based on semi-structured interviews. We interviewed 21 palliative care nurses in Belgium who were trained in the role of learning facilitator. Data were analyzed using Grounded Theory principles.

Results

First all interviewees shared the conviction that patient care is their core business. Secondly two core themes were defined: nurses’ preferences toward sharing knowledge and their balancing between patient care and team care. Combining these themes yielded a typology of nurses’ behavioral style: the clinical expert-style, the buddy-style, the coach-style and the mediator-style.

Conclusions

Palliative care nurses’ interpretation of the role as facilitator of general practitioners’ learning diverges according to personal characteristics and preferences.

Practice implications

Asking clinical expert nurses to become a facilitator of other professional's learning requires personal mentoring during this transition. Nurses’ preferences toward practice behavior should be taken into account.