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Logo of jamiaJAMIA - The Journal of the American Medical Informatics AssociationInstructions for authorsCurrent TOC
J Am Med Inform Assoc. 2010 Jul-Aug; 17(4): 403–410.
PMCID: PMC2995659

Effects of a computer-supported interactive tailored patient assessment tool on patient care, symptom distress, and patients' need for symptom management support: a randomized clinical trial

Abstract

Objective

To examine the effects of a computer-assisted, interactive tailored patient assessment (ITPA) tool in oncology practice on: documented patient care, symptom distress, and patients' need for symptom management support during treatment and rehabilitation.

Design and methods

For this repeated measures clinical trial at a university hospital in Norway, 145 patients starting treatment for leukemia or lymphoma were randomly assigned to either an intervention (n=75) or control group (n=70). Both groups used the ITPA for symptom assessments prior to inpatient and outpatient visits for up to one year. The assessment summary, which displayed patients' self-reported symptoms, problems, and distress in rank-order of the patient's need for support, was provided to physicians and nurses in the intervention group only but not in the control group.

Results

Significantly more symptoms were addressed in the intervention group patient charts versus those of the control group. Symptom distress in the intervention group decreased significantly over time in 11 (58%) of 19 symptom/problem categories versus 2 (10%) for the control group. Need for symptom management support over time also decreased significantly more for the intervention group than the control group in 13 (68%) symptom categories.

Conclusion

This is the first study to show that an ITPA used in an interdisciplinary oncology practice can significantly improve patient-centered care and patient outcomes, including reduced symptom distress and reduced need for symptom management support.

Keywords: Computer support, cancer, interactive tailored patient assessment, randomized clinical trial, symptom distress, symptom management support, patient-centered care

Introduction

Cancer patients often experience multiple physical, functional, and psychosocial symptoms and problems during treatment and rehabilitation. However, research has shown that clinicians (both physicians and nurses) are often unaware of patients' symptoms, failing to recognize up to 50–80% of patients' concerns during consultations,1–5 resulting in considerable distress, uncertainty, non-compliance, and complaints.6–10 Due to large individual variations in symptom experiences, even among patients with the same diagnosis, clinicians cannot automatically anticipate a patient's need for symptom management support. To effectively help patients manage their illness, clinicians need to better understand the patient perspective of their illness experiences, concerns, and need for support. Therefore, patients and clinicians could benefit from support systems for symptom assessment tools that are specifically tailored to (a) help patients report their experienced symptoms, problems, and concerns, and (b) support clinicians in providing individually targeted symptom management support. Such tools could promote patient-centered care, which is rapidly becoming an advocated model for good clinical practice and has demonstrated positive effects on patient health status, well-being, and quality of life. Patient-centered care has been variously defined as the consideration of patients' needs, perspectives, and experiences; opportunities for patients to participate in their own care; and enhancement of patient–clinician communication and partnership.10

A few studies that evaluated the use of standardized paper-based and computerized assessment instruments used at the point of care have shown an impact on patient-provider communication and processes of care.11–13 But so far the effects of standardized assessments on patient outcomes in routine clinical practice remain unclear, although one study found a slight positive effect on motional well-being and quality of life.14 A review of 33 randomized clinical trials (RCTs) on the effects of interventions to help patients address their information needs within consultations concluded that they produced only limited benefits to patients, except for a small increase in patient satisfaction.15 Computerized standardized assessments have the advantage of real-time assessment and immediate data feedback to clinicians. There is also repeated evidence of their feasibility and acceptability to clinicians.16–20 Yet only one pilot study with a small sample size has reported promising results on patient outcomes. Boyes et al16 reported that providing medical oncologists with immediate feedback about cancer patients' self-reported psychosocial well-being via a computerized assessment tool significantly reduced the likelihood of patients reporting debilitating symptoms at follow-up visits, but did not reduce their level of anxiety, depression, and perceived needs compared to the control group. However, these previous studies did not take full advantage of the ability for individual tailoring that computerized assessments can provide.

Interactive health communication tools have proliferated in recent years, together with a growing trend toward empowering patients to take a more active role in their own healthcare. Interactive tailored patient assessments (ITPAs) have become increasingly important as a means to elicit patients' illness experiences and to tailor patient care or self-care recommendations to each patient's individual needs. An ITPA is defined here a computerized assessment instrument in which follow-up questions are tailored to each patient individually, based on his or her initial response.21 The ITPAs have a number of advantages compared to standardized computerized or paper-based assessments. Superfluous questions can be eliminated to ensure that follow-up questions are relevant to the patient. For example, patients can branch into sections that focus on their specific symptoms and problems without being bothered by other questions that are irrelevant to them. Because patients complete only a subset of the total number of items available, the response burden is decreased. Consequently, ITPAs allow for expansion in the breadth and depth of an assessment that helps patients find a closer match between the symptom or problem descriptions and their actual illness experiences. This enables clinicians to hone in on a patient's specific problems and thus provide more individually targeted symptom management support, which in turn may increase the likelihood of improved patient outcomes.

That this can improve patient care was supported in our earlier work. Two studies with rehabilitation patients tested a computer-based nurse-administered patient assessment tool, containing 14 dimensions of functional performance, to assist nurses in preference-based care planning.22 23 Both studies found significant improvements in nursing care during patients' inpatient stay compared to a control group. One of the studies also demonstrated a greater improvement in physical functioning from admission to discharge with indirect effects on patient satisfaction.21

We then expanded our research into the realm of cancer care and developed a new choice module with a cancer specific content to support patient-centered symptom management for cancer patients. In contrast to the rehabilitation module that was not tailored, the cancer module was designed as an ITPA with a tailoring algorithm to be used by the patient on a tablet computer rather than the nurse and to support not only nursing but interdisciplinary care. Prior to the study reported here this ITPA was pilot tested in an outpatient clinic with 52 patients with various cancer diagnoses and illness stages. Preliminary results from this pilot study showed that the cancer module had a significant potential to increase the number of symptoms addressed by clinicians (nurses/physicians) and it demonstrated high scores on patients' perceived ease of use.20

However, the ultimate value of a clinical intervention such as the Choice ITPA depends on whether it can demonstrate positive effects not just on processes of care but also on important patient outcomes over the course of patients' illness trajectory, especially those that can make a difference in patients' quality of life such a symptom distress and illness management. None of our previous studies with rehabilitation patients and the cancer pilot study had investigated effects on such patient outcomes over time; but had primarily focused on patient care during a single episode of care. This is generally a shortcoming in many clinical intervention studies that rarely measure sustained effects on patient outcomes over time. Therefore an important next step and purpose of the study reported here was to conduct a prospective repeated measures randomized clinical trial (RCT) to test the effects of the Choice ITPA for cancer patients in routine interdisciplinary oncology practice on patient outcomes over time from diagnosis through treatment and rehabilitation. We hypothesized a positive effect on the number of symptoms addressed by nurses and physicians and reduced symptom distress and patients' need for symptom management support over time during treatment and rehabilitation.

Methods

Description of the Choice ITPA

The Choice ITPA module used in this study was administered in an interactive format on a touchpad tablet PC to help cancer patients in preparation for a consultation with a clinician to communicate their symptoms, problems, and concerns (including distress). The ITPA enabled patients to prioritize and rank their problems according to need for symptom management support. The purpose of the Choice ITPA is to support clinicians in more patient-centered, illness-related rather than disease-focused consultations and help them to better address a patient's individual symptoms, problems, and concerns. The assessment is tailored to each patient individually based on his/her initial response. Using the Choice ITPA, patients in this study first selected from among 19 problem categories any that applied to them, for example ‘eating and drinking problems’. This triggered a subset of more specific symptom descriptions in lay terms from which patients again selected those that applied, such as ‘taste changes’, ‘lack of appetite’, etc. They then rated their selected symptoms on a scale of 0 to 4 (not bothersome to extremely bothersome) and prioritized their needs for symptom management support on a scale of 0 to 10 (not important to receive support to extremely important). When done, the system immediately created an assessment summary that in this study was available to clinicians in the intervention group to support them in their communications with the patient. The summary displayed the patient's symptoms and problems in rank order of need for support, thereby directing clinician attention to the problems that mattered most to each patient. Because patients could complete the assessment on their own at their own pace prior to being seen by a clinician, the assessment itself does not take up clinician time. A detailed demonstration of the Choice ITPA is provided in the online appendix. Development of the Choice application for cancer patients20 23 and demonstration of its validity and reliability (r=0.74–0.85) are reported in detail elsewhere.21

Study participants

Patient inclusion criteria were: starting treatment for a newly diagnosed acute myelogenous leukemia (AML), lymphatic leukemia (ALL), multiple myeloma, Hodgkin disease, or non-Hodgkin lymphoma; starting treatment for a recurrence or with allogeneic or autologous stem cell support (SCS) for the same diseases; above 18 years of age; and no radiation on the brain, as this might have influenced a patient's ability to reliably report symptoms and fill out questionnaires.

Sample size

Our sample size estimation was informed by data from our pilot study20 and an expected effect size of 0.4 in the difference of the mean changes in symptom distress from baseline to completion of treatment and, during follow-up, between the intervention and control groups, divided by its SD. Since this study tested the intervention in real-life clinical practice, we were more concerned about not detecting any difference when the experimental treatment was, in fact, beneficial. A two-sided significance level was therefore set to 0.10, weighing the risks of a type II versus type I error. Based on a repeated measures analysis of variance via a mixed-model approach,24 we needed to enroll 50 patients per group to achieve 80% power, and a two-sided 10% significance level with at least four repeated measurements.25 To account for up to 30% attrition, we decided to enroll 72 patients per group.

Study sites

This prospective, repeated measures randomized controlled trial was conducted in a specialized care and teaching hospital in Norway. Patients were recruited from three inpatient cancer units and their associated outpatient clinics. Lymphoma patients were recruited from two inpatient units that specialize in lymphoma treatment, including high-dose treatment with autologous SCS. Leukemia and multiple myeloma patients were recruited from a specialized care unit for malignant blood diseases and, at the time of study, the only site in Norway to perform high-dose treatment with allogeneic SCS.

Study intervention

Both study groups used the Choice ITPA repeatedly for assessments at inpatient and outpatient visits during treatment as well as follow-up visits. For patients in the intervention group, the resulting assessment summaries were available to physicians and nurses during patients' inpatient stays and outpatient visits. Assessment summaries for patients in the control group, however, were unavailable to clinicians at any time. We hypothesized that in the intervention group: physicians and nurses would address significantly more symptoms and problems in patient charts; patients would report less symptom distress; and there would be less need for support to manage their symptoms and problems over time.

Study procedures

The ethical review board for Norway's Region South approved the study, and we obtained written informed consent from all study participants.

Under the direction of the principal investigator, two research assistants (RAs) were trained in the recruitment plan and data collection protocol with demonstration and back demonstration of procedures. To include patients, every morning the head nurse or secretary at the inpatient units would identify anyone on the list of admitted patients who met the study's inclusion criteria and refer them to an RA. The RA consecutively approached all eligible new patients within the first hours of admission, explained the purpose and procedures of the study, and asked for written informed consent. Consenting patients first completed baseline questionnaires (see below) and then the Choice ITPA assessment on a tablet computer.

After completion of baseline questionnaires and the Choice assessment, patients were randomized into the intervention or control group via a computer-generated minimization algorithm that equalized the groups on gender and type of treatment (SCS or not). The tablet computer was programmed so that the randomization algorithm could only be accessed after completion of the baseline Choice assessment. Because the study's intervention was to provide nurses and physicians with assessment summaries of patient symptoms, problems, and concerns, a patient's group assignment could not be concealed after baseline data were obtained.

Immediately after baseline data collection, the Choice assessment, and randomization, an RA printed the assessment summary and added it to the charts for inpatients from the intervention group only to be available to physicians and nurses to assist with treatment and care planning during a patient's stay.

When patients were readmitted as inpatients for a new treatment cycle, they again completed the Choice ITPA, and we added the new assessment summaries to their charts in the same manner as above. When patients underwent high-dose chemotherapy treatment with SCS, which required staying at the hospital for several weeks, they repeated the Choice assessment once a week and their chart summaries were updated. After patients had completed their chemotherapy treatment cycles or SCS treatment, they continued to use the Choice ITPA as outpatients at their follow-up visits, for up to four visits. For outpatient visits, an RA met with patients at their scheduled appointment and asked them to complete the Choice ITPA prior to the consultation. For patients in the intervention group the assessment summary was clipped onto the patient's chart that was used during consultation with the clinician, but this was not done for patients in the control group.

At the study's start, we conducted informational meetings with the nurses and physicians from participating units to explain the study and the content of assessment summaries and point to where in the charts they would find them for intervention group patients. They were instructed to use them as they felt was appropriate; for example, during conversations with patients, for treatment and care planning, etc.

Outcome measures and data collection

The main study outcome measures were: (1) number of patient symptoms and problems addressed by physicians and nurses in patient records; (2) changes in symptom distress; and (3) changes in patients' need for symptom management support over time. We assessed symptom distress and patient need for symptom management support by taking repeated measures with the Choice ITPA as described above.

To ensure that the two study groups did not differ at baseline, we collected characteristics on diagnosis, treatment, gender, age, and education. In addition, health-related quality of life was assessed with the SF-36,26 depression with the Center for Epidemiological Studies Depression Scale (CES-D),27 and social support with the Medical Outcome Study Social Support Scale (MOS-SS).28 We obtained information about diagnosis and treatment for each patient from their records.

To compare groups in terms of symptoms and problems addressed by physicians and nurses in patients' charts, two trained raters who were blinded to patients' study group assignment conducted independent chart audits for inpatient and outpatient visits and abstracted both physicians' and nurses' inpatient and outpatient notes for symptoms, problems, and concerns equivalent to those contained in the Choice ITPA. We chose charts from the patients' second inpatient and first outpatient follow-up visits for chart auditing to ensure as much homogeneity as possible in time since diagnosis and treatment stage. A semi-automated, computer-supported coding scheme similar to one that had been successfully used in several studies before was applied.20 22 23 It contained the full list of symptoms, problems, and concerns contained in the Choice ITPA, along with synonymous terms. It also contained codes to specify more specific information, such as the type of entry (eg, an order entry), who entered the information (by profession), etc. Data were stored in a database and exported into SAS29 for analysis. The κ statistic used for inter-rater reliability of chart audits showed 0.82 agreement beyond chance.

Statistical analysis

Data are presented as mean±SD for numerical-valued variables and percentages for nominal variables, unless specified otherwise. The χ2 test or Fisher's exact test was used to compare characteristics of patients between intervention and control groups for dichotomous variables. For numerical-valued variables, the two-sample t-test or the Wilcoxon rank-sum test was used, depending on the normality of data to compare the two groups. A linear mixed-effects model methodology,25 30 which accounts for both the correlation between the repeated measurements across times within each subject and the variability between the subjects, was applied to compare the trends over time between the two groups on the outcome variables (symptom distress and patient need for symptom management support). We defined symptom distress as the sum of individual distress scores. Patients' self-reported need for symptom management support was defined by the priority scores for support that patients had assigned to their identified problem categories. A two-sided p<0.10 was considered statistically significant. We performed all statistical analyses using SAS V.9.1.3.

Results

Of 161 eligible cancer patients asked to participate, 75 patients were assigned to the intervention group and 70 to the control group (figure 1). Fifty-eight patients in the intervention group and 59 patients in the control group completed the assessment at least four times during the study. Fifty patients from each group were followed for at least 100 days from the beginning of treatment; 25 patients from the intervention group and 26 patients from the control group were followed for 365 days (a year). There were no statistically significant group differences in attrition rates. Reasons for attrition included patients being followed up at another hospital, death, or recurrence of the disease while in the study.

Figure 1
Enrollment, randomization, and follow-up of study participants.

Baseline data

There were no statistically significant differences in baseline characteristics, including potentially confounding variables such as diagnosis, treatment, gender, age, education, health-related quality of life, depression status, and social support (table 1).

Table 1
Group comparisons on baseline patient characteristics

Effect on patient care

To test the hypothesis that physicians and nurses would address significantly more symptoms and problems in patient records in the intervention group, we compared the number of chart entries that addressed symptoms, problems, and concerns documented for both groups. There were significantly more symptoms and problems addressed by physicians and nurses in inpatient and outpatient records for the intervention group, indicating a significant positive effect of the study's intervention on patient care (table 2).

Table 2
Number of patient charts reviewed (N) and mean±SD for chart entries

Effects on symptom distress

To test the hypotheses that patients in the intervention group would report less symptom distress and need for symptom management support, we compared group differences in trends over time for the 19 Choice ITPA problem categories. Because there were no statistically significant differences in baseline demographics and potential confounding variables (table 1), we did not include these variables as covariates in the analysis. Slopes were compared between the two groups for each outcome variable, using the linear mixed-effects model.

Figure 2 depicts linear predictions and their 95% CIs for symptom distress over time for both groups. Group differences were statistically significant in favor of the intervention group for four categories: discomfort, eating/drinking, sleep/rest, and sexuality.

Figure 2
Group differences over time on symptom distress including degrees of freedom (df) to reflect numbers of observations and p-values for problem categories with significant group differences.

In addition, the intervention group showed significant negative slopes, indicating significant decreases in symptom distress over time in 10 of 19 (58%) problem categories (p<0.01 for 8 categories: pain, eating/drinking, bowel/bladder, energy, sleep/rest, concentration/memory, activities of daily living/self-care, and worries/concerns; p<0.05 for 2 categories: bleeding/infection and sexuality). In comparison, only two categories in the control group had significant decreases in symptom distress over time (pain: p=0.07; and worries/concerns: p=0.03).

Effects on need for symptom management support

Figure 3 depicts group differences in trends over time on patients' prioritized need for symptom management support. Group differences were statistically significant in favor of the intervention group in 13 of 19 (68%) categories.

Figure 3
Group differences over time on patients' prioritized need for symptom management support. Trends in patients' prioritized need for symptom management support over time are shown for both groups with p-values for categories that have significant group ...

At closer inspection, a downward trend, or improvement, in patients' prioritized need for symptom management support was observed in the intervention group for all but two categories, although only six categories had statistically significant slope values at p<0.01. In contrast, 14 categories in the control group showed an upward trend, six of them with a statistical significance, indicating that patients had greater needs for support to manage their problems over time. Interestingly, these six categories all involve some psychological aspects: energy, sleep/rest, sexuality, mood/feelings, maintaining control over my situation, and relationships with family and friends.

Discussion

A rapidly growing research literature documents the importance of patient-centered care.31 Helping patients effectively manage their illness requires not only a focus on medical issues, but also on patients' symptoms, illness experiences, concerns, and feelings about the impact of their illness on their daily lives.10 32–34 To our knowledge, this is the first study that systematically evaluated the effects of an ITPA that assists clinicians in clinical practice by systematically eliciting and integrating patients' symptoms, problems, and concerns into patient care to affect patient outcomes. Our results suggest that such systems can improve patient-centered care and reduce both symptom distress and patients' need for symptom management support.

Although group differences in patient outcomes were not statistically significant for all symptom/problem categories, the trends all point toward the same direction: greater improvements in the intervention group compared to the control group. It is also noteworthy that results from this study were achieved in the real world of clinical practice, with its variations in patients and treatments as well as the heterogeneity among clinicians in education, experience, and motivation to use the assessment summaries. The promising results suggest that the Choice ITPA could also work in other clinical practice settings. Studying effects of electronic interventions in everyday practice, as was done here, is also consistent with the goals for translational research and the National Institutes of Health recommendations,35 calling for practice-based trials so that the evidence generated through research has more external validity.

An interesting observation was that patients in the control group showed an increased need for symptom management support over time in 14 problem categories, six of them with a statistical significance involving psychological aspects. In contrast, the intervention group showed a downward trend, or improvement, in all but two categories, with a statistically significant downward slope in 13 of 19 categories. Given the design of the study, where also control group patients completed the Choice ITPA that was not shared with clinicians, we do not know if this may have created unmet expectations and thus greater needs for symptom management support in the control group. However, an alternative explanation is also plausible: in the control group clinicians had no access to the support of assessment summaries. It is therefore likely that more problems and concerns remained unnoticed for these patients, resulting in more unresolved problems and thus a higher level of need for symptom management support over time. This makes sense in the context of studies showing that unmet problems and concerns predict high levels of emotional distress.9 36–38 With the intervention group, nurses and physicians were aided by assessment summaries that highlighted the symptoms, problems, and need for symptom management support from their patients' perspectives. Therefore, the clinicians could discuss and alleviate many problems early on which could reduce patient distress and the need for symptom management support over time. The finding that clinicians addressed significantly more symptoms and problems for patients in the intervention group as documented in patients' charts than in the control group supports this explanation. As we do not know the real answer to why this finding occurred however, future studies should also include a control group that is not exposed to Choice assessments to exclude the risk of unmet expectations. More research is also needed to investigate the potential of the Choice ITPA to reduce psychological morbidity, as well as how the reduced need for symptom management support effects clinician time.

This study has several limitations. First, it tested the intervention in ‘real world’ clinical practice, where there is little control of contextual variables and the heterogeneity within and among patients, treatments, clinicians, and practice settings. Hence, we chose a non-conservative 0.10 type I error level to weigh more on clinical rather than statistical significance. Although most of the observed significance levels were less than 0.05, results need to be interpreted with caution. To confirm our findings, this study should be repeated with a larger sample size and a more intensive data collection protocol that allows statistical control of contextual variables.

Second, in this study the Choice ITPA was used as a stand-alone system. The observed effects may have been different if assessment data were automatically integrated into the electronic health record (EHR) and so electronically available to clinicians at all times. However, to warrant making such a system change to the EHR, we first needed to obtain evidence that the Choice ITPA was in fact able to produce positive results. As a next step, and based on the current findings, the Choice ITPA has, in fact, been integrated into the EHR and its functionality was increased; it not only provides access to assessment summaries but also to reports of patients' symptom patterns over time. The Choice application is administered in our clinic as part of regular practice like this: the nurse assigned to the patient gives it on the tablet computer to the patient on arrival to the outpatient clinic or inpatient ward. When the patient has completed the assessment the summary is synched into the clinical portal and available electronically. A paper copy of the assessment summary is given to the patient by the nurse; another is added to that patient's charts to be available to clinicians involved in the patient's care or consultation. However, other implementation methods may also be considered. For example, patients may complete the assessment at a kiosk or workstation on arrival, or online from home and send the assessment summary to the clinic in advance. The latter is a method we are currently exploring as it would allow the hospital to prepare for the patient's visit in advance. Further studies should evaluate the effects of different implementation methods and an EHR-integrated ITPA.

Third, the study was conducted in a specialized teaching hospital in Norway. Nonetheless, positive preliminary results of the Choice ITPA's effect on patient care were also found in a pilot study conducted in the USA.20 These promising results suggest that the ITPA could be applicable and effective in different practice settings, although this has yet to be tested.

Fourth, we do not know the ‘dose’ of the intervention, or how much physicians and nurses actually used the assessment summaries in their care. This would have required a different study design. Patients are exposed to many clinicians during clinical encounters, and there will always be variations in how a new intervention is adopted and used. Furthermore, as patients in this study were on different treatment schedules, the number of times they used the Choice ITPA varied. However, the significant group differences in symptoms and problems addressed in patients' charts that we found in this study indicate that clinicians did use assessment summaries sufficiently to produce the observed results. Thus our data suggest that it may be sufficient if only a few nurses and physicians use the intervention efficiently to provide the observed outcomes. If this is so, the Choice ITPA could be quite powerful even with a smaller but devoted group of clinician users. Another way to increase the ‘dose’ could be the addition of systematic training of clinicians on how to effectively use the Choice assessments during consultations. This could potentially limit practice variations and strengthen the results. It therefore seems important to determine with future studies what is the ‘sufficient dose’ and what are best practices for using the Choice intervention in clinical practice.

Fifth, our study did not analyze the effect of the Choice ITPA on clinician time, a concern often raised by physicians because patients report more symptoms via their assessments than in a usual consultation. Preliminary evidence from the literature suggests, however, that this concern may be unwarranted—patient-centered consultations that address a patient's cues and concerns, which is what the Choice ITPA supports, have been found to reduce consultation times by 10–15% on average.5 39 With the support of the Choice ITPA clinicians do not need to spend much of their short consultation time asking patients what their problems are, as this step was completed prior to the consultation, making it more efficient. Another feature of the Choice ITPA that may reinforce consultation efficiency is that it allows patients to rank their symptoms/problems according to need for symptom management support. This helps clinicians focus on the problems that are most important to the patient. Symptoms and problems are often correlated, (eg, worries, poor sleep, fatigue), so helping patients with their most important ones may also alleviate others at the same time. However, further studies are needed to explore these relationships and to evaluate the effects of the Choice ITPA on clinician time.

Sixth, because both groups completed Choice assessments prior to their consultations, the control group patients may have recalled their answers and thus brought up more symptoms/problems in their consultations than what ‘usual care’ patients would do. However, the purpose of this study was to explicitly test the effects of providing clinicians with assessment summaries generated by the ITPA, not the effects of patients taking the assessment. The fact that the control group also completed the assessments made detecting significant group differences even more difficult. That such differences were found in spite of a potential recall bias in the control group therefore strengthens our findings. An interesting next step would be to study how the ITPA affects patients. Because walking through the individually tailored assessment enables patients to reflect on and verbalize their problems, further research could explore whether this affects patient factors such as knowledge, illness understanding, communication behavior (eg, question asking), anxiety, uncertainty, expectations, or illness-management skills.

Finally, while this study evaluated the effects of the Choice ITPA on patient care and outcomes of symptom distress and patients' need for symptom management support, it did not provide information about the underlying mechanisms by which these effects occurred and how it altered the content and quality of the consultations. Measuring the number of patient symptoms and problems addressed by patients and nurses in patient records in this study cannot be seen as a proxy of whether or not symptoms were discussed during the clinical encounter, and this study does not tell us to what extend concerns were discussed or addressed. Therefore, and as the next step in this line of research, our team is currently conducting another study to analyze and compare nursing and physician consultations, with and without the support of the Choice ITPA, by audiotaping patient–provider communications. This follow-up study will also give us data on the effect(s) of the Choice ITPA on patient and clinician communication behaviors as well as on consultation time.

Conclusion

In summary, this is the first study known to demonstrate the effectiveness of a computer-supported ITPA tool used in routine interdisciplinary clinical practice to improve patient-centered symptom management and patient outcomes (reduced symptom distress and need for symptom management support). When patients used the Choice ITPA to report their symptoms, problems, and concerns and nurses and physicians received the resulting assessment summaries, the clinicians addressed significantly more symptoms and problems in patients' charts. Patients also reported less symptom distress and need for symptom management support over time during treatment and rehabilitation. Although the content of the Choice ITPA was cancer-specific, the underlying principles of the ITPA are generic. These promising results suggest that further studies should be designed that adapt and test similar ITPAs in other patient populations and settings to explore the potential benefits for a wider range of patients.

Acknowledgments

For their valuable contributions to this study the authors thank (in alphabetical order): Roar Andersen, Suzanne Bakken, Lorentz Brinch, Elin Høy, Randi Lehne, Gunn Sandvik, Øyvind Skare, Eldbjørg Vorkinn, and the nurses, physicians, and patients who participated in this trial.

Footnotes

Funding: This study was supported by Norwegian Research Council Grant # 154739/320. No funders had any role in the study design, analysis, or writing of this paper.

Competing interests: None.

Provenance and peer review: Not commissioned; externally peer reviewed.

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