Finding the right balance of physical activity: A focus group study about experiences among patients with chronic fatigue syndrome

Objective

To explore contexts of experiences of physical activity perceived as beneficial or harmful for CFS patients.

Methods

A qualitative study with empirical data from two focus groups with purposive sampling. Mean age was 50, two of ten participants were male, and social demographics varied. Participants were invited to share stories of good as well as bad experiences concerning physical activity. Data were analysed with systematic text condensation.

Results

Participants were not averse to physical activity, but specific preconditions would determine how the activity was perceived. Physical activity was experienced as helpful and enjoyable, especially related to leisure activities where flexible and individual adaptation was feasible. Non-customized activity may precipitate set-backs giving patients the impression of losing control and being betrayed by their bodies. Strategies to review energy usage in daily life could adjust expectations, diminish stress load and assist in approaching a more appropriate priority and balance.

Conclusion

Self-management, body awareness and physical activity of choice combined with facilitation and advice from health care professionals is essential to achieve a positive outcome.

Practice implications

Exercise programmes should be adapted, paced, and self-managed in accordance with personal preferences and activity levels to be beneficial and empowering for CFS patients.     

Why don't patients take their drugs? The role of communication, context and culture in patient adherence and the work of the pharmacist in HIV/AIDS

Objective

This study examined facilitators and barriers to adherence in four South African antiretroviral therapy (ART) clinic sites and explored context and communication factors in relation to the role of the pharmacist.

Methods

Data were collected from interviews and narratives of patients and health professionals around the issues of adherence and qualitatively analysed using principles of Thematic Content Analysis.

Results

Findings confirm the complex interplay between illness, communication, sociocultural, economic, context and systemic issues. Analysis suggests adherence is multifaceted and reinforces the critical role of communication factors in achieving concordance between patient and pharmacist.

Conclusion

Successful treatment of HIV/AIDS depends on pharmacists and healthcare teams understanding contextual and interactional factors which play a role in adherence.

Practice implications

The findings reinforce the importance of embedding a patient-centred approach in the training and everyday practice of pharmacists. The value of qualitative methods in understanding barriers to adherence and the potential value of the cultural broker in intercultural settings is discussed. Some suggestions are made as to how adherence counselling can be made relevant and effective.     

Mixed methods evaluation: pharmacists' experiences and beliefs toward an interactive communication approach to patient interactions

Objective

To characterize pharmacists’ experience and explore their beliefs toward an interactive communication technique, the three prime questions (3PQs),where pharmacists ask about patients’ understanding of medication's purpose, directions, and monitoring.

Methods

Mixed method design. Pharmacists were briefly trained and then integrated the 3PQs into their practice for two weeks. Pharmacists recorded their perceptions of patient interactions, completed a survey addressing self-efficacy and role beliefs toward the 3PQs, and participated in a focus group.

Results

Eleven pharmacists participated and the 3PQs were used with 176 patients. Most interactions were under 5 min. Pharmacists reported that questions about directions and monitoring were most effective in gathering new information with refills whereas medication purpose question was preferred for new fills. The majority of pharmacists were certain they could use the 3PQs and agreed it was their role. Five themes arose from the qualitative analysis: established communication routines, enhanced patient-pharmacist relationships, good medication history, tailoring of the 3PQs, and impact of pharmacy organization.

Conclusion

The 3PQs enabled pharmacists to briefly assess patient medication experiences and tailor education while fostering patient-centered relationships in pharmacy practice.

Practice implications

While the 3PQs may enhance pharmacists’ patient assessment; integration may challenge pharmacists’ work routine.     

In myalgic encephalomyelitis/chronic fatigue syndrome,increased autoimmune activity against 5-HT is associated with immuno-inflammatory pathways and bacterial translocation

Background

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is accompanied by activation of immuno-inflammatory pathways, increased bacterial translocation and autoimmune responses to serotonin (5-HT). Inflammation is known to damage 5-HT neurons while bacterial translocation may drive autoimmune responses. This study has been carried out to examine the autoimmune responses to 5-HT in ME/CFS in relation to inflammation and bacterial translocation.

Methods

We examined 5-HT antibodies in 117 patients with ME/CFS (diagnosed according to the centers for disease control and prevention criteria, CDC) as compared with 43 patients suffering from chronic fatigue (CF) but not fulfilling the CDC criteria and 35 normal controls. Plasma interleukin-1 (IL-1), tumor necrosis factor (TNF)α, neopterin and the IgA responses to Gram-negative bacteria were measured. Severity of physio-somatic symptoms was measured using the fibromyalgia and chronic fatigue syndrome rating scale (FF scale).

Results

The incidence of positive autoimmune activity against 5-HT was significantly higher (p<0.001) in ME/CFS (61.5%) than in patients with CF (13.9%) and controls (5.7%). ME/CFS patients with 5-HT autoimmune activity displayed higher TNFα, IL-1 and neopterin and increased IgA responses against LPS of commensal bacteria than those without 5-HT autoimmune activity. Anti-5-HT antibody positivity was significantly associated with increased scores on hyperalgesia, fatigue, neurocognitive and autonomic symptoms, sadness and a flu-like malaise.

Discussion

The results show that, in ME/CFS, increased 5-HT autoimmune activity is associated with activation of immuno-inflammatory pathways and increased bacterial translocation, factors which are known to play a role in the onset of autoimmune reactions. 5-HT autoimmune activity could play a role in the pathophysiology of ME/CFS and the onset of physio-somatic symptoms. These results provide mechanistic support for the notion that ME/CFS is a neuro-immune disorder.     

The impact of energy modulation on physical functioning and fatigue severity among patients with ME/CFS

Objective

The energy envelope postulates that patients with Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS) will improve functioning when maintaining expended energy levels at the same level as available energy level.

Methods

Estimated weekly Energy Quotients were established by dividing expended energy level by perceived energy level and multiplying by 100. Two groups of patients were identified following participation in a non-pharmacologic intervention trial. Some were able to keep expended energy close to available energy and others were not successful at this task.

Results

Those who were able to stay within their energy envelope had significant improvements in physical functioning and fatigue severity.

Conclusion

Findings suggest that helping patients with ME/CFS maintain appropriate energy expenditures in coordination with available energy reserves can help improve functioning over time.

Practice implications

Health care professionals that treat patients with ME/CFS might incorporate strategies that help patients self-monitor and self-regulate energy expenditures.     

Who's in charge? The role of responsibility attribution in self-management among people with chronic illness

Objective

To explore how responsibility attribution influences self-management regimens among people with chronic illness.

Methods

This qualitative content analysis included 26 interviews with people living with chronic illness.

Results

The participants attributed responsibility to internal, external or a combination of these factors, meaning that they either assumed responsibility for self-management or considered other people or factors responsible. Internal responsibility was associated with a multifaceted self-management regimen, whereas external responsibility was related to “conventional” self-management such as taking medication, managing symptoms and lifestyle changes.

Conclusion

How responsibility is attributed is vital for the way in which individuals perform self-management. In this study, those who attributed responsibility to external factors mainly performed recommended behaviours to control their illness. In contrast, to take charge of their illness and be an active participant in the care, individuals must take responsibility for themselves, i.e. internal responsibility.

Practice implications

Health-care providers should acknowledge and support individuals’ wishes about various levels of responsibility as well as different kinds of patient-provider relationships.     

Self-investigation in adolescent chronic fatigue syndrome: Narrative changes and health improvement

Objective

A small-scale intervention study into narrative self-investigation in adolescent chronic fatigue syndrome (CFS).

Method

The self-confrontation method (SCM) is an instrument to assess and change personal life stories. Forty-two adolescents diagnosed with CFS were included and randomly assigned to either 6 or 12 sessions with the SCM. Twenty-five healthy adolescents were assigned to 6 sessions. Outcome was measured directly after the self-investigation procedure at 4 months. Follow-up measurements were made 10 months later. The Checklist Individual Strength and the Child Health Questionnaire were used to measure changes in fatigue, physical and psychosocial functioning.

Results

Self-investigation resulted in significant changes in participants’ narratives. Moreover, after self-investigation there was a significant improvement in fatigue, physical and psychosocial functioning for the adolescents with CFS. The patients who completed 12 sessions improved most. At follow-up, the positive effects were maintained.

Conclusion

Self-investigation enables a move beyond the symptoms of CFS in an individualized, patient centered way. Narrative transformation seems to contribute to improved physical and psychosocial outcome in adolescent CFS.

Practice implications

The SCM allows adolescents to discover (for themselves) factors that might cause or perpetuate their fatigue. The results suggest that self-investigation is a useful instrument in the management of adolescent CFS.     

Studying the social construction of cancer-related fatigue experience: the heuristic value of Ethnoscience

Objectives

Patients’ lived experience of illness and health is receiving increased attention in the medical field. Understanding patients’ perspective and experiences is an undoubted asset for efficient health interventions and improved clinical concordance. Patients’ experiences of care and cure, however, are influenced by the cultural setting in which these experiences take place. This implies that health interventions should be “ecological” and attuned to the specific sociocultural context of the patients.

Methods

Our research group is conducting a cross-cultural qualitative study aimed ad exploring how fatigue (a symptom very common in cancer) is perceived and manifested by patients in different countries (Canada, Thailand, England and Italy). In order to achieve this, the study was design according to the method of Ethnoscience, that appeared to us the best suited to explore the meanings that patients attribute to their state and the linguistic patterns they use to describe it. In this paper we will describe in details the process of Ethnoscience and will discuss the heuristic value of this research approach.

Results

Ethnoscience was an effective research strategy for exploring how beliefs and values shape symptoms and the behavioural manifestations of cancer related fatigue.

Conclusions

This paper discusses the heuristic value of Ethnoscience and its applicability to the study of health relate topics, particularly those where issues of social construction are important.

Practical implications

Ethnoscience is a promising and innovative research approach, able to cast light on the way people experience and make sense of their illness.     

Patients’ reaction to the disclosure of rare dreaded adverse events

Background

Physicians must frequently inform their patients of the risks of rare, but serious, adverse events (AEs).

Objective

To examine how patients react to the disclosure of rare AEs.

Methods

Outpatients viewed a video of a physician describing a medication associated with a rare AE. Subjects then rated their worry, perceived chance of developing the AE, and willingness to take the medication.

Results

Non-White men were more likely to perceive a greater chance of developing the AE compared to White men [Adjusted odds ratio (95% CI) = 3.37 (1.09-10.45)]; White women were more likely to be worried [2.00 (0.95-4.24)] and to perceive a greater chance of developing the [6.22 (2.50-15.50)], perceive a greater chance of developing the AE [6.27 (2.43-16.15)], and be less willing to take the medication [0.23 (0.09-0.59)], compared to White men.

Conclusions

Gender and ethnicity influence how patients react to disclosure of rare, but serious, AEs.

Practice implications

An improved understanding of patients’ risk perceptions is required to inform the development of best practices to improve risk communication.     

Practice patterns with hormone therapy after surgical menopause

Objectives

The aim of this study was to examine hormone therapy (HT) users’ experiences, perceptions and information sources in 2009.

Study design

Questionnaire survey was conducted in 2009 among women using HT. The questionnaire (n = 500) was distributed from pharmacies across Finland. The response rate was 58% (n = 281).

Main outcome measures

The survey measured self-reported benefits and adverse reactions, fears and information sources.

Results

The number of systemic HT users reporting fears was 50% (n = 99). The most common fear was breast cancer (27%). Systemic HT users who had considered discontinuation of HT or had temporarily discontinued HT experienced fears more often than other respondents (p < 0.001 and p = 0.029). The most common source of information on the benefits of HT in both surveys was a physician (91%), whereas the most common source of information on adverse reactions was the media (54%). Vaginal HT users had experienced similar fears as users of systemic HT.

Conclusions

Women using HT need more information about the risks of HT from their physician. This is especially important for women who are not able to manage the symptoms without HT, but have tried or considered discontinuation and for vaginal HT users.     

Exploring the community pharmacist's role in palliative care: focusing on the person not just the prescription

Objective

Changes in health care provision have led to an emphasis on providing end of life care within the home. community pharmacists are well positioned to provide services to community-based palliative care patients and carers.

Methods

A multiple qualitative case study design was adopted. A total of 16 focus groups and 19 interviews with pharmacists, nurses, general practitioners and carers were undertaken across metropolitan and regional settings in Western Australia, New South Wales, Queensland and Victoria. Data were analysed thematically using a framework that allowed similarities and differences across stakeholder groups and locations to be examined and compared.

Results

Three main themes emerged: effective communication; challenges to effective communication; and: towards best practice, which comprised two themes: community pharmacists’ skills and community pharmacists’ needs.

Discussion

A key component of the provision of palliative care was having effective communication skills. Although community pharmacists saw an opportunity to provide interpersonal support, they suggested that they would need to develop more effective communication skills to fulfil this role.

Conclusion

There is clear need for continuing professional development in this area - particularly in communicating effectively and managing strong emotions.

Practice implications

Community pharmacists are willing to support palliative care patients and carers but need education, support and resources.     

Biological underpinnings of the commonalities in depression, somatization, and Chronic Fatigue Syndrome

Background

Somatization is a multisomatoform disorder characterized by medically unexplained, functional or psychosomatic symptoms. Similar somatic symptoms are key components of depression and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

Methods

This paper reviews the evidence that such symptoms are organically based. We use the term “physio-somatic” to describe these symptoms.

Results

Inflammation, cell-mediated immune (CMI) activation and alterations in the tryptophan catabolite (TRYCAT) pathway are associated with the physio-somatic symptoms of depression, ME/CFS and/or somatization. Proinflammatory cytokines, decreased tryptophan and aberrations in TRYCATs may cause physio-somatic symptoms, such as fatigue, autonomic symptoms, hyperalgesia and somatic presentations.

Conclusions

The data suggest co-ordinated and interacting biological pathways driving the occurrence of physio-somatic symptoms across these three disorders, giving a biologically validated “pathway phenotype”. These data have far-reaching implications for DSM-IV diagnostic conceptualizations of somatization (and ME/CFS) suggesting the presence of an emerging organic explanation. Future research should focus on the role of immune regulation, and co-ordination, of neuronal activity and, through larger data sets, ultimately creating new, biologically validated classification rules. These data have implications for the development of novel therapies utilizing these insights, buttressing the role of psychotherapy in psychosomatic presentations.     

Concentraciones de interleucina-18 en preeclámpticas y embarazadas normotensas sanas

Objective

To compare concentrations of interleukin-18 in pre-eclampsia patients and healthy normotensive pregnant women.

Method

A total of 100 patients were selected. Fifty pre-eclamptic patients were selected as cases (group A) and a control group selected by having the same age and body mass index to study group, consisting of 50 healthy normotensive pregnant women. Blood samples were collected in all patients before labour and immediately after diagnosis in group B to determine interleukin-18 concentrations.

Results

There were no significant differences in relation to maternal age, gestation age and body mass index at the time of taking the sample (P = ns). There was a statistically significant difference in interleukin-18 concentrations between patients in cases group (group A; 38.6 ± 6.5 pg/ml) and patients in control group (group B; 32.2 ± 8.5 pg/ml; P < .05). There was a moderate, positive and significant correlation with systolic blood pressure values (r = 0.341; P < .05) and with diastolic blood pressure values (r = 0.408; P < .05).

Conclusions

Pre-eclampsia patients had significantly higher concentrations of interleukin-18 when compared with healthy normotensive pregnant women.     

Communication and social competencies in medical education in German-speaking countries: The Basel Consensus Statement.: Results of a Delphi Survey

Objective

To propose a comprehensive set of competencies and educational objectives for communication and social competencies in undergraduate medical education and to support the nationwide implementation of these issues in all medical schools.

Methods

Thirty experts from different medical and psychosocial disciplines participated in a 2-day workshop using the Nominal Group Technique (NGT) to develop an initial set of educational objectives. These were refined, structured, and rated according to their importance by means of a two-step Delphi Survey involving additional experts in medical education.

Results

The initial workshop resulted in 188 educational objectives assigned to 26 different topics. After the Delphi Survey, 131 objectives remained, assigned to 19 different topics. Some objectives that could be assigned to more than one topic were subsumed under a new more general category.

Conclusion

The described consensus process proved successful as one method to develop a set of educational objectives.

Practical implications

The Basel consensus statement can be used to orientate curriculum reform and development in medical education.     

Shared decision making in medicine: The influence of situational treatment factors

Objective

Although shared decision making (SDM) has become increasingly important in bioethical discussions and clinical practice, it is not clear in which treatment situations SDM is suitable. We address this question by investigating social norms on the appropriateness of SDM in different situations.

Methods

We conducted qualitative expert interviews with patients, general practitioners, and health administration and research professionals.

Results

SDM was considered to be most important in severe illness and chronic condition. Furthermore, SDM was indicated to be required if there is more than one therapeutic option, especially if it is not clear which option is best. Interviewees classified end-of-life decisions and decisions about prevention as those that primarily should be made by informed patients. On the other hand a paternalistic decision was considered most appropriate in emergency situations and when the patient does not want to participate in decision making.

Conclusion

This study demonstrates that multiple situational factors and their interactions must be considered regarding the scope of SDM in medical consultation.

Practice implications

Research addressing this question will help physicians adjust their consultation style and allow implementations of SDM and decision aids to be tailored more appropriately to complex treatment situations.     

An exploration of patient decision-making for autologous breast reconstructive surgery following a mastectomy

Objective

The aim of this study was to examine patients’ experiences of the decision to undergo breast reconstructive surgery following mastectomy.

Method

21 Women, who had undergone reconstruction, took part in a semi-structured qualitative interview, which examined the participants’ experience of the decision-making process. The recorded interviews were transcribed verbatim and analyzed using “framework analysis”.

Results

Women who underwent immediate reconstruction spoke of the convenience of undergoing only one operation with regards to juggling work and childcare arrangements. For women who underwent delayed reconstructive surgery the reasons centre on dissatisfaction with wearing prosthesis. Others spoke of no choice, as immediate reconstruction was not offered as an option. However both groups did report similar influential factors and received and used similar informational content and informational sources in order to make their decision.

Conclusion

The study outlines the different motivations for undergoing immediate or delayed breast reconstruction and highlights that there is not always a choice offered to patients.

Practice implications

Future patients who are considering breast reconstruction should be provided with the relevant information to make a well informed decision and may benefit from different methods of information delivery that could include decision aids such as informational booklets, photographs, and videos.     

Illness perceptions in patients with fibromyalgia

Objective

Former studies in chronic diseases showed the importance of patients’ beliefs and perceptions. The Revised Illness Perception Questionnaire was developed to assess these illness perceptions. Our goal was to investigate psychometric properties of the IPQ-R for Fibromyalgia Dutch language version (IPQ-R FM-Dlv) and to describe illness perceptions of participants with FM.

Methods

196 patients completed the IPQ-R FM-Dlv. Internal consistency, domain structure and inter domain correlations were calculated and compared to the IPQ-R English language version. Scores were compared with chronic fatigue syndrome (CFS), rheumatoid arthritis (RA), and coronary heart disease (CHD).

Results

Most psychometric properties were comparable to those of the original IPQ-R. Participants showed a lack of understanding of their illness, expected their FM to be chronic and to have a lot of negative consequences on functioning. In 17 out of 24 domains significant differences were found between FM and CFS, RA, and CHD patients.

Conclusion

The IPQ-R FM-Dlv showed acceptable psychometric properties, although some aspects need closer examination. Illness perceptions of FM patients on the Dutch questionnaire were non-comparable to CFS, RA, and CHD patients on the English questionnaire.

Practice implications

The IPQ-R FM-Dlv can be used to assess illness perceptions of Dutch FM patients.     

Using multi-perspective methodologies to study users’ interactions with the prototype front end of a guideline-based decision support system for diabetic foot care

Purpose

Clinical practice guidelines are important instruments for improving the quality of care; in paper form, however, they are not used as effectively as possible. In order to develop a guideline-based decision support system (DSS) prototype to help clinicians deal with diabetic patients’ foot problems, we drew on methodologies from qualitative research, cognitive science, and information systems. This multi-perspective approach was intended to facilitate user-centered design and evaluation.

Methods

We employed field observations, structured interviews, and document analyses to collect and analyze users’ workflow patterns, decision support goals, and preferences regarding interactions with a DSS. Next, we aligned their requirements with sequence diagrams and followed Nielsen's heuristics to develop a DSS prototype. We then performed think-aloud analyses and used the technology acceptance model to direct our evaluation of users’ perceptions of the prototype.

Results

Users had a positive response to the DSS prototype in terms of its clarity of design and ease of use. They expressed a high intention of using the system in the future.

Conclusion

Applying multi-perspective methodologies is an effective way to study and design user interactions with the front end of a guideline-based DSS.     

Health information seeking: a review of measures and methods

Objective

Outlines the methods and measures commonly used to study active health information seeking and prescribes important considerations in advancing the study of patient information seeking.

Methods

A systematic review of the literature from 1978 to 2010. A single bibliometric database, PsychInfo, identified 648 articles of health information seeking. The 129 articles included in the review were coded by type of sample, measures (n = 12) utilized to study health information seeking, and types of study methods (n = 5).

Results

A majority of studies used non-clinical samples and measured general health information seeking (i.e., whether the participant engaged in a search for health information) through cross-sectional study designs.

Conclusions

There are varying samples, measures, and designs used to identify those who do or do not seek health information. Future research should look into how health information seeking influences health management and should uncover the social and relational functions of health information seeking using more advanced (and less routinely applied) measures and methods of studying health information seeking.

Practice implications

More people are actively searching for health information and health providers should address this in their discussions with patients.