Sandra van Dulmen

Online focus groups as a tool to collect data in hard-to-include populations: examples from paediatric oncology

BackgroundThe purpose of this article is to describe and evaluate the methodology of online focus group discussions within the setting of paediatric oncology.MethodsQualitative study consisting of separate moderated asynchronous online discussion groups with 7 paediatric cancer patients (aged 8–17), 11 parents, and 18 survivors of childhood cancer (aged 8–17 at diagnosis).ResultsAll three participant groups could be actively engaged over a one-week period. Respondents highly valued the flexibility and convenience of logging in at their own time and place to join the discussion. Adolescent patients and survivors emphasized that the anonymity experienced made them feel comfortable to express their views in detail. The findings indicate a strong preference for online group discussions across all participant groups.ConclusionThe findings show that online focus group methodology is a feasible tool for collecting qualitative data within the setting of paediatric oncology, and may offer new opportunities to collect data in other hard-to-include populations. The evaluations seem to indicate that the online group discussions have given participants an opportunity to articulate their experiences and views in a way they might not have done in a traditional group discussion.

Has patients’ involvement in the decision-making process changed over time?

Objective  To get insight into the changes over time of patients’ involvement in the decision‐making process, and into the factors contributing to patients’ involvement and general practitioners’ (GPs) communication related to the Medical Treatment Act (MTA) issues: information about treatment, other available treatments and side‐effects; informed decision making; asking consent for treatment.

Does Age Really Matter? Recall of Information Presented to Newly Referred Patients With Cancer

PURPOSE To examine age- and age-related differences in recall of information provided during oncology consultations. PATIENTS AND METHODS Two hundred sixty patients with cancer diagnosed with heterogeneous cancers, seeing a medical or radiation oncologist for the first time, participated in the study. Patients completed questionnaires assessing information needs and anxiety. Recall of information provided was measured using a structured telephone interview in which patients were prompted to remember details physicians gave about diagnosis, prognosis, and treatment. Recall was checked against the actual communication in audio-recordings of the consultations. RESULTS Recall decreased significantly with age, but only when total amount of information presented was taken into account. This indicates that if more information is discussed, older patients have more trouble remembering the information than younger ones. In addition, recall was selectively influenced by prognosis. First, patients with a poorer prognosis recalled less. Next, the more information was provided about prognosis, the less information patients recalled, regardless of their actual prognosis. CONCLUSION Recall is not simply a function of patient age. Age only predicts recall when controlling for amount of information presented. Both prognosis and information about prognosis are better predictors of recall than age. These results provide important insights into intervention strategies to improve information recall in patients with cancer.

Communication in context: new directions in communication research

By focusing attention almost exclusively on a single encounter, researchers have adopted a rather restricted view on studying communication in health care. After all, communication does not take place in a vacuum but is influenced by the context in which it takes place. We would therefore strongly recommend to broaden the perspective of communication research. In this respect, four lines of investigation are proposed, each guided by different theories. In the first, context is determined by the goals or targets aimed at by both parties in the medical encounter. The second concerns the context of time, referring to the influence of previous and future medical encounters. The third is set up around the organizational context in which an interaction takes place and the last defines context by looking at a medical encounter as a meeting between two multifaceted parties. Studying a medical encounter in its broader context is expected to provide answers to intriguing questions such as why health care professionals do not always act in conformity with the general approved standards of high quality communication and how the factor time span can be used more effectively in the medical encounter. Eventually, a broader context view will bridge the existing gap between theory and practice.

Compliance with momentary pain measurement using electronic diaries: A systematic review

Electronic diaries are increasingly used to assess daily pain in many different forms and populations. This systematic review aims to survey the characteristics of studies using electronic pain diaries and to examine how these characteristics affect compliance. A literature search of 11 electronic databases was conducted. Studies were evaluated on the basis of predetermined inclusion criteria by two independent reviewers. Study characteristics were grouped into four categories: general, population, electronic diary, and sampling procedure (i.e., response, attrition, and compliance rates) including strategies to enhance compliance. The 62 included publications reported from 43 different datasets. Papers were usually written in English and published as from 2000. Samples mostly consisted of female chronic pain patients aged 19–65 years from western countries. Most diaries held less than 20 items and were completed up to 6 times daily at fixed or prompted times for 1 month at most. Less than 25% of the studies reported both response and attrition rates; however, a majority reported compliance. Compliance was generally high, and positively associated with shorter diaries, age, having a users manual, financial compensation and using an alarm. It is important that the various study characteristics are catalogued carefully, especially response and attrition rates, because they can affect compliance. Measures of momentary pain are often developed for the purpose of a certain study; standardisation and validation of these measures is recommended. Finally, authors should mention whether they report on data that has also been used in previous studies.

A Smartphone-Based Intervention With Diaries and Therapist-Feedback to Reduce Catastrophizing and Increase Functioning in Women With Chronic Widespread Pain: Randomized Controlled Trial

Background Internet-based interventions using cognitive behavioral approaches can be effective in promoting self-management of chronic pain conditions. Web-based programs delivered via smartphones are increasingly used to support the self-management of various health disorders, but research on smartphone interventions for persons with chronic pain is limited. Objective The aim of this trial was to study the efficacy of a 4-week smartphone-delivered intervention with written diaries and therapist feedback following an inpatient chronic pain rehabilitation program. Methods A total of 140 women with chronic widespread pain who participated in a 4-week inpatient rehabilitation program were randomized into 2 groups: with or without a smartphone intervention after the rehabilitation. The smartphone intervention consisted of 1 face-to-face session and 4 weeks of written communication via a smartphone. Participants received 3 smartphone diary entries daily to support their awareness of and reflection on pain-related thoughts, feelings, and activities. The registered diaries were immediately available to a therapist who submitted personalized written feedback daily based on cognitive behavioral principles. Both groups were given access to a noninteractive website after discharge to promote constructive self-management. Outcomes were measured with self-reported questionnaires. The primary outcome measure of catastrophizing was determined using the pain catastrophizing scale (score range 0-52). Secondary outcomes included acceptance of pain, emotional distress, functioning, and symptom levels. Results Of the 140 participants, 112 completed the study: 48 in the intervention group and 64 in the control group. Immediately after the intervention period, the intervention group reported less catastrophizing (mean 9.20, SD 5.85) than the control group (mean 15.71, SD 9.11, P<.001), yielding a large effect size (Cohen’s d=0.87) for study completers. At 5-month follow-up, the between-group effect sizes remained moderate for catastrophizing (Cohen’s d=0.74, P=.003), acceptance of pain (Cohen’s d=0.54, P=.02), and functioning and symptom levels (Cohen’s d=0.75, P=.001). Conclusions The results suggest that a smartphone-delivered intervention with diaries and personalized feedback can reduce catastrophizing and prevent increases in functional impairment and symptom levels in women with chronic widespread pain following inpatient rehabilitation. Trial Registration Clinicaltrials.gov NCT01236209; http://www.clinicaltrials.gov/ct2/show/NCT01236209 (Archived by WebCite at http://www.webcitation.org/6DUejLpPY)

The development and feasibility of a web-based intervention with diaries and situational feedback via smartphone to support self-management in patients with diabetes type 2.

AIMS The aim of the study was to develop and test the feasibility of a three months web-based intervention, delivered by a smartphone to support self-management in patients with type 2 diabetes. METHODS The intervention included use of a smartphone enabling access to daily web-based diaries and individualized written situational feedback. The participants registered their eating behavior, medication taking, physical activities and emotions three times daily using the mobile device. They also registered their fasting blood glucose level in the morning diary. A therapist had immediate access to submitted diaries and used the situational information to formulate a personalized feedback based on Acceptance Commitment Therapy. The purpose of the diaries and the situational feedback was to stimulate self-management. RESULTS Eleven of the fifteen participants included in the study completed the intervention, which was evaluated as supportive and meaningful. Most of the participants reported positive life style changes. The response rate to the daily registration entries was good and few technical problems were encountered. CONCLUSIONS The described intervention is feasible and should be tested out in a large-scale study. The developed smartphone application seems a promising tool for supporting patients with type 2 diabetes to make important life style changes.

Written online situational feedback via mobile phone to support self-management of chronic widespread pain : a usability study of a Web-based intervention

BackgroundThis pretrial study aimed to develop and test the usability of a four-week Internet intervention delivered by a Web-enabled mobile phone to support self-management of chronic widespread pain.MethodsThe intervention included daily online entries and individualized written feedback, grounded in a mindfulness-based cognitive behavioral approach. The participants registered activities, emotions and pain cognitions three times daily using the mobile device. The therapist had immediate access to this information through a secure Web site. The situational information was used to formulate and send a personalized text message to the participant with the aim of stimulating effective self-management of the current situation. Six women participated and evaluated the experience.ResultsThe intervention was rated as supportive, meaningful and user-friendly by the majority of the women. The response rate to the daily registration entries was high and technical problems were few.ConclusionThe results indicate a feasible intervention. Web-applications are fast becoming standard features of mobile phones and interventions of this kind can therefore be more available than before.Trial registration numberClinicalTrials.gov: NCT01236209

Communicating with child patients in pediatric oncology consultations: a vignette study on child patients', parents', and survivors' communication preferences

Objective: To investigate the preferences of children with cancer, their parents, and survivors of childhood cancer regarding medical communication with child patients and variables associated with these preferences.

Patient Education About Treatment in Cancer Care: An Overview of the Literature on Older Patients' Needs

An increasing number of older people are treated for cancer. Several factors, such as comorbidity and sensory deficits, occur more frequently in older patients than in younger patients. In addition, their life circumstances, values, and preferences may differ. These factors ask for tailored nurse-older patient communication. This article reviews recent literature on the specific needs of older patients with cancer in the treatment phase of the disease. No studies addressed treatment-related needs of older patients specifically. Seventeen studies controlled for age showed that many older patients want as much information on disease and treatment as possible, but they are less interested in details than younger patients. Furthermore, older patients reported less need for information on sexual consequences and psychosocial support. The results remain difficult to interpret because of variation in study designs and questionnaires. Moreover, none of the studies controlled for age-related variables. Studies that illuminate the unique needs of older patients with cancer in the treatment phase of the disease are strikingly limited given the demographics of cancer in our society. Research is needed that explicitly investigates these needs and the influence of age-related changes in cognitive, physical, and psychosocial functioning.