This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Formative Research, is properly cited. The complete bibliographic information, a link to the original publication on https://formative.jmir.org, as well as this copyright and license information must be included.
Enhanced communication with health care providers (HCPs) can improve symptom management and health-related quality of life (HRQoL) for patients with chronic health conditions. Access to appropriate communication venues is needed to improve communication, however. As such, digital communication interventions mediated by patient portals carry the potential to support patient-provider communication and interaction and through this, also facilitate shared decision-making (SDM). The
The aim of this study was to assess the feasibility of the
The study was designed as a single-arm, pre-post feasibility study combining quantitative and qualitative methods for data collection. Patients from an endocrine outpatient clinic were invited to use the
Patient participants (N=23) were a median 54 (range 26-78) years old and primarily male (14/23, 61%). Nonparticipants (N=16) were a median 73 (range 55-80) years old and primarily male (12/16, 75%). The average SUS score was 72.2, indicating good system usability. Assessments were completed by 8 participants from home prior to outpatient visits. The assessments entailed various bodily symptoms and needs for information. Participants sent 17 secure messages related to patient administrative matters, symptoms, and challenges. Focus group participants (N=4) were all female and registered nurses. Data were analyzed in 2 predefined themes: Acceptability and Demand. Acceptability included the subthemes intervention attractiveness and intervention suitability. Demand included the subthemes elements of SDM and intervention challenges and opportunities. All patient participants completed outcome measures at baseline, and 19 (19/23, 83%) completed outcome measures at 3 months. These preliminary efficacy findings were mixed and inconclusive.
The study design provided findings from both patient and HCP perspectives and supported feasibility of the
ClinicalTrials.gov NCT NCT04218721; https://www.clinicaltrials.gov/ct2/show/NCT04218721
Living with a chronic health condition is demanding, as chronic health conditions often cause a variety of symptoms (eg, anxiety, depression, fatigue, loneliness, and sleeping problems) that may negatively affect health-related quality of life (HRQoL) [
Remote SDM may provide benefits by helping HCPs to understand which aspect of the patient’s problem requires action and, together with the patient, identify the action required to solve the problem [
Secure messages can also be an integral part of SDM, providing patients and HCPs with opportunities for contact, and benefits to patient-provider communication from using secure messages have been implied [
Remote assessment in preparation for health care visits can support symptom management [
Even though benefits of patient-provider communication and patient outcomes from the use of secure messages and remote patient-reported symptoms have been reported, research examining digital interventions combining secure messages and remote patient-reported symptoms through patients’ portals to facilitate SDM is scarce. There are also patient barriers to the use of patient portals, such as lack of user-friendliness, technical support, education, and access to the internet [
Seeking to address some of the issues raised by existing research, the current research team designed and developed a digital patient-provider communication intervention, called
The
In this study, the assessment was used as preparation prior to upcoming in-person outpatient consultations, as well as for feedback during the consultations. Secure messages were sent from, and received in, a shared message inbox managed by a dedicated moderator (ie, registered nurses). Routines for the moderator were established in dialog with the registered nurses to suit daily clinical workflow. The moderator would send a secure message through the patient portal approximately one week prior to the planned visit with an invitation for patients to complete an assessment (See
Invitation to complete the
Screenshots of the
Completed assessment received from the health care professional (HCP) interface.
In order to evaluate the effectiveness of complex interventions, initial testing and refinement of the intervention to ensure its feasibility are recommended [
The participants in this study were patients with NFPA and HCPs recruited from an endocrine outpatient clinic at a university hospital in Norway. NFPA are benign pituitary tumors, with which patients frequently experience a long period of slow deterioration of their health status before undergoing surgery, and they usually experience a variety of symptoms in the aftermath [
Eligibility criteria for inclusion of patients in the study were (1) a diagnosis of NFPA (anywhere in the disease trajectory); (2) receiving treatment and follow-up from the study endocrine outpatient clinic; (3) ≥18 years of age; (4) able to understand oral and written Norwegian; (5) access to a smartphone, tablet, or personal computer; (6) access to the internet with a secure access key (BankID).
Participating HCPs were registered nurses responsible for care and follow-up of NFPA patients at the endocrine outpatient clinic. Some of them had previously participated in studies related to the development and intervention tailoring of
The study was approved by the Regional Committee for Medical and Health Research Ethics (2018/2201) and the Oslo University Hospital Institutional Review Board equivalent function (2017/9223). Informed consent was obtained from all participants.
Registered nurses and physicians at the endocrine outpatient clinic identified eligible patient participants based on study inclusion criteria, and the registered nurses asked if these patients were interested in receiving information about the study. Some of the patients were contacted and asked prior to upcoming consultations; others were asked during consultations. Those interested in receiving more information were contacted by the first author (BS) by phone and provided with information about the study purpose and procedures. Those interested in study participation signed a digital information and consent form. Patient-reported outcome measures were collected online through a secure server at Services for Sensitive Data (TSD; University of Oslo). After completing baseline outcome measurements, patient participants were contacted by the first author and informed how to register and log into the patient portal to access the
HCPs at the endocrine outpatient clinic were provided with information about the study, and those willing to participate were included.
Data collection from patient participants was carried out from April 2020 until October 2020, when an unexpected incident led to the closure of the hospital patient portal and subsequently closure of the study before the planned study period completion. Outcome measures were collected from patient participants prior to them receiving access to
Information about patient participants’ age, sex, level of education, work, income, and year of diagnosis and whether participants had received surgery were collected at baseline. HCP participants were all female registered nurses working in the endocrine outpatient clinic.
To explore to what extent the intervention was judged as satisfying or attractive, the first author’s experiences from introducing patient participants to the
Details of actual system use of the
The HCP participants were invited to share their experiences in a focus group that was conducted digitally due to national in-person meeting restrictions during the COVID-19 pandemic. The focus group interview guide consisted of open-ended questions based on operationalization of acceptability and demand [
To explore the feasibility of outcome measures and whether
Anxiety and depression were measured with the Hospital Anxiety and Depression Scale (HADS), a 14-item measure of anxiety and depression [
HRQoL was measured with the noncommercial RAND 36 survey, a 36-item HRQoL measure of physical, emotional, cognitive, role and social functioning, physical health, and general and global health [
Health literacy was measured with the Health Literacy Questionnaire (HLQ) [
Statistical analyses were completed using SPSS version 25 (IBM Corp, Armonk, NY). Data on baseline characteristics and perceived usefulness are presented as medians and ranges for continuous variables and as proportions with percentages for categorical variables. Dependent paired
Data from secure messages sent by patient participants and data from the focus group with HCP participants were analyzed using thematic analysis inspired by Braun and Clarke [
The first and last authors read the transcript from the HCP focus group to become familiarized with the data [
Of 39 patients with NFPA who were assessed for eligibility, 23 (59%) agreed to participate (ie, patient participants), and 16 (41%) declined or did not meet study requirements (ie, nonparticipants). The 23 participants who were included in the study completed baseline measures and received the
Recruitment flowchart.
Patient participants (N=23) were a median 54 (range 26-78) years old at inclusion. Of these, 17 (74%) had completed surgery. Participants were mostly male (14/23, 61%), and almost one-half (10/23, 44%) noted elementary school as their highest level of education (see
Patient participants' baseline demographics and illness characteristics (N=23).
Characteristics | Results | ||
Age (years), median (range) | 54 (26-78) | ||
|
|||
|
Female | 9 (39) | |
|
Male | 14 (61) | |
|
|||
|
Married/cohabitating | 15 (65) | |
|
Single/divorced | 8 (35) | |
|
|||
|
Elementary/high school | 10 (44) | |
|
University/college ≤4 years | 7 (30) | |
|
University/college >4 years | 6 (26) | |
|
|||
|
Full-time/part-time work | 7 (30) | |
|
Sick leave/disability benefits | 10 (44) | |
|
Retired/other | 6 (26) | |
|
|||
|
200,000-399,999 | 6 (26) | |
|
400,000-599,999 | 7 (30) | |
|
600,000-799,999 | 0 (0) | |
|
800,000-1,000,000 | 2 (9) | |
|
>1,000,000 | 8 (35) | |
Surgery, n (%) | 17 (74) | ||
Months since surgeryb, median (range) | 11 (1-39) |
aNOK: Norwegian krones; a currency exchange rate of NOK 1=US $0.90 is applicable.
bn=17.
Among the 23 patients receiving the
During the 3-month study period, 43% (10/23) used the
Of the included patient participants, 4 (4/23, 17%) sent a total of 17 secure messages (ie, assessments not included) during the study. HCPs responded to all, mainly by messages, some by phone or in-person in the upcoming consultation. The content of the messages from participants were sorted into 2 codes: (1) Patient Administrative Matters and (2) Symptoms and Challenges.
For the “Patient Administrative Matters” code, the 9 secure messages mainly concerned a change in the scheduled time of a hospital appointment, prescriptions for medications, or other practical matters. One participant wrote:
I have called the pharmacy for a while, but they have not received my medicine. Think the medicine is called something like [medication name]. I was advised by the doctor to take it during my appointment in May. Have called you too, but no answer.
For the “Symptoms and Challenges” code, the 8 secure messages concerned various symptoms and challenges experienced by the participants. The messages centered on a need for guidance (ie, including information and advice) regarding how to manage various symptoms and how to live with the chronic health condition. One participant wrote:
What should I feel or look for when I work with challenging things over time, or to see the degree to which I can work-out. Previously I have been told to double the dose of [medication] when needed, but when is that? What are the risks associated with the procedures that have been performed?
Another participant wrote:
I am still on sick leave, as I feel VERY and UNUSUALLY tired. I get easily tired after doing something. Have also had strict restrictions about making sure I take it easy, not bending forward, sleeping in at least a 30 degrees upwards position, not just showering hot, not eating hot/spicey food etc. (...) Have today raised hemoglobin to [X], as I have lost a lot of blood which may have affected the situation? (...) I’m not quite sure what to do to feel better?
HCPs sent invitations to complete intervention assessments to all patients with upcoming consultations. Of the 13 invitations sent, 8 (62%) participants completed the assessments prior to the scheduled consultation. In a phone conversation, 1 patient said about the assessment:
So incredibly beneficial to be enabled to meet prepared.
Patient participants marked their symptoms and needs in all 4 assessment categories. The categories
Overview of the content in completed assessments (n=8).
Assessment main categories | Completed individual assessments | |||||||
|
1 | 2 | 3 | 4 | 5 | 6 | 7 | 8 |
|
|
|
|
|
|
|
|
|
Bodily symptoms | Ya | Y | Y | Y | Y | Y | Y | Y |
Psychosocial challenges | Nb | Y | Y | Y | Y | N | Y | Y |
The need for work related support | N | N | Y | N | N | N | Y | N |
The need for information | Y | Y | Y | Y | Y | Y | Y | Y |
aY: yes.
bN: no.
Reasons for not completing the assessment varied: The upcoming consultation was rescheduled; the assessment was not received by the user due to technological difficulties; and one participant “felt fine” and felt no need to complete an assessment. Two participants did not receive an assessment notification in the patient portal and were therefore not aware of the assessment invitation. Patients had to register their contact information in the hospital patient portal in order to receive notifications there, and a failure to do so could potentially explain why these participants did not receive a notification.
Findings from the focus group with HCP participants were analyzed into the 2 predefined themes of Acceptability and Demand.
Participating HCPs provided a variety of feedback on the intervention, constituting 2 subthemes: (1) Intervention Attractiveness and (2) Intervention Suitability.
In the Intervention Attractiveness subtheme, HCP participants described their experience with the intervention in favorable words and phrases. They described the availability that the intervention provided for the patients as favorable, being able to contact HCPs when they needed to. They also stated that the intervention provided a unique option, especially for patients with complex health issues or heavy symptom burden. They stated that they would have liked to use the intervention for a longer period than the actual study period and said they would like to be a part of and use the intervention in a potential future clinical trial. Regarding recruitment of patient participants, the HCPs described most patients as interested and easy to recruit for this study. As one HCP stated: “...it was not difficult to recruit patients at all, they were, many were positive...”
In the Intervention Suitability subtheme, participating HCPs described the need for a secure and safe place for patients and HCPs to be able to communicate digitally and stated that the intervention was suited for this purpose. They highlighted that their, as well as the patient participants’, previous involvement in the process of intervention development and tailoring was an important factor to make the intervention suited to purpose. However, based on experiences of recruiting participants for the pilot study, the HCPs were not entirely convinced that the intervention was suitable for older patients. One HCP stated that older patients sometimes lacked the necessary equipment (eg, a smartphone) to participate, and reflecting on this, other HCPs contemplated whether a pre-educational group could be useful for eligible patient participants that needed guidance on how to use the intervention. The participating HCPs described themselves and the participating patients as satisfied with the
The participating HCPs described the actual use of the
In the Elements of SDM subtheme, HCPs described how the assessment helped patient participants sort their thoughts before the hospital visits and stated that it acted as a way of providing information about common symptoms and needs. One HCP described the assessments completed prior to consultation as making it easier to address sensitive topics in in-person conversations with patients. This was supported by the other participating HCPs. Some of them described how patients’ identification and prioritization of topics important to them contributed to a focus in the consultation conversation, centering around what was most important to discuss for the patients. The HCPs described how the assessments had contributed to change their perspective on what was important to discuss with patients and said that, through this information exchange focusing on patients’ current situations, a more individualized follow-up was facilitated based on the patient’s needs. As described by one of the HCPs:
...the most important thing is that it is user centered, that patients dare to raise issues that are important to them, so that we can focus on what is important, for them to benefit the most from the health care service, this is very important and very rewarding.
Also, one HCP described how the intervention provided support and contact for patients who felt unprepared for the aftermath of surgery. This was also supported by the other participating HCPs.
In the Intervention Challenges and Opportunities subtheme, participating HCPs described the intervention as time-consuming initially, as they had to learn a new system (ie, hospital patient portal) and develop new routines to be adapted into the daily clinical workflow. However, they stated that, after having learned to use the system, it was no longer time-consuming but rather something that could be executed in between other daily tasks. As stated by one HCP:
...we had to learn a new system, which we spent some time on, but I think it was quite easy to learn the system, and it quickly became the routine.
One participating HCP also stated that they spent some time between themselves discussing potential responses to patients before replying to the secure messages from patients. They reported considering this as something positive, providing quality-assured responses to patients and also contributed to the development of care though contributing to professional discussions. One participant stated that the assessment could potentially even provide support for new HCPs with little prior knowledge about the patient group. They also highlighted, based on feedback from patients, that access to the intervention was valued, even by the patients not using the intervention (ie, participating nonusers), stating that interventions were often used the most by those with complex health issues or heavy symptom burden.
Pre-post intervention findings at the 3-month follow-up revealed statistically significant increases in symptoms of anxiety (mean difference [MD] 3.9, 95% CI 2.3-5.5) and depression (MD 2.7, 95% CI 0.9-3.8) for the participating patients. Time since surgery had no impact on these results. HRQoL findings indicated a statistically significant improvement for the “Role Physical” subscale (MD 25.0, 95% CI 3.0-47.0) but not for the 7 other subscales. There was a high degree of heterogeneity in the data, with large variance and subsequently broad CIs for the HRQoL subscales (eg, the “Role Emotional” subscale improved by 17.5, but due to the large variance, the findings were not statistically significant). Scores related to health literacy remained stable, with no statistically significant changes from baseline to follow-up. See
Findings from this feasibility pilot study gave insights related to the acceptability and demand of the
This study provided insight into opportunities for remote SDM through use of secure messages and digital assessments mediated by a patient portal. During the study period, only 17% of participants used the secure message feature. However, simply having the access and opportunity to communicate with HCPs may be of benefit to patients, even without using this option [
Existing research has found patients to be interested in using secure messages with their HCPs and that patients prefer the convenient and asynchronous aspects provided by secure messaging through portals [
The assessments collected prior to consultation in this study revealed a wide range of symptoms and needs experienced by the patient participants, which may help identify important topics and priorities for patient-provider discussions and SDM, as also pointed out in the focus group with HCPs. Such assessments may address the individuality and variability in symptoms, aiding patients with communicating their symptoms, needs, and preferences for care to their HCPs [
In this study, 41% of the eligible patients declined to participate or did not complete study requirements (ie, nonparticipants), which is a low percentage of people declining compared with similar studies examining eHealth interventions (ie, 60%-68%) [
Nonparticipants in this study were older (median 73 years) than the participants (median 54 years), corresponding with findings from existing research [
In this study, some of the eligible patient participants struggled to understand some of the terms used to describe the study participation in detail. Use of technology may inadvertently create health equity concerns by not paying sufficient attention to the social determinants of health during the implementation process [
System usability was rated as good but not excellent in this study, which indicates room for intervention improvement. However, using the SUS [
The psychosocial outcome measures in this study were primarily included to test feasibility of the measures (eg, are they easy to answer digitally, do they capture changes). Even though some participants initially struggled with completing the outcome measures, all 19 participants receiving the 3-month follow-up measures completed these. There were no questions from the participants related to outcome measures after the initial guidance on how to complete these, indicating satisfactory study routines for this aspect. The noted statistically significant increases in anxiety and depression during the 3-month study period were unexpected. These findings could however be related to the ongoing pandemic during this study, and a recent study revealed that the general population was almost 3 times more likely to suffer from symptoms of anxiety and depression due to the pandemic [
Compared with indicators of health literacy (ie,
Even though the closure of the hospital patient portal during this study caused premature study closure, the software development of the
The COVID-19 pandemic brought an urgent need for remote care through secure, technical systems and as such, boosted the use of the national patient portal [
This study has several limitations. First, the study was designed to assess the feasibility of a digital patient-provider communication intervention to support patients with NFPA. All patient participants received access to the intervention, without randomization, and statements regarding the effectiveness of the intervention cannot be made. Efficacy testing was however not a major part of this feasibility pilot study. Second, the participants were recruited through a collaborating partner (ie, endocrine outpatient clinic), and it may therefore be assumed that the participating sample were highly motivated and the study cannot conclude whether patients with NFPA in general would be interested in, or benefit from, such an intervention. Indications on feasibility are however promising. Third, the urgent closure of the hospital patient portal led to an unpredictably shortened study period, which might have affected study outcome. Fourth, the focus group with HCPs was conducted 1 year after the pilot study was finished, and all HCP participants were registered nurses. This might have affected recall of experiences, and other additional professionals could have elaborated even more on questions asked in focus group.
This study also has several strengths. First, both patient and HCP perspectives are included in the study, underlining the importance of stakeholder involvement when aiming for real world implementation [
Through exploration of acceptability, demand (ie, system use), and limited efficacy testing, this study established feasibility of the digital patient-provider communication intervention
The increasing number of persons living with chronic health conditions entails, in addition to individual personal challenges, increases costs and demands for resources, representing a major challenge for health care services. Therefore, future research should continue to explore how assessments and secure messages mediated through patient portals can promote and support remote SDM in a variety of chronic health conditions.
Finally, in order to examine actual effects of digital patient-provider communication interventions such as
This feasibility pilot study explored how a digital patient-provider communication intervention,
Pre-post intervention changes.
Hospital Anxiety and Depression Scale
health care provider
Health Literacy Questionnaire
health-related quality of life
mean difference
nonfunctioning pituitary adenomas
shared decision-making
System Usability Scale
This study was funded by the Norwegian Nurses Organization (Grant #847382; principal investigator EB). The authors would like to thank the patients who participated in the study. The authors would also like to thank the heads of the participating departments, Aud E. Stenehjem and Jens Bollerslev, as well as the health care providers at the Endocrine Day Care Unit, Rikshospitalet, Oslo University Hospital, for their support and encouragement in the research process. Also, the authors would like to thank the patient representatives participating throughout. Finally, the authors would like to thank the research team members, especially Marianne Ollivier and Elise Flakk Nordang from the content development group and the design and software team by Per Tømmer, at the Department of Digital Health Research at Oslo University Hospital, for their contribution throughout the project process.
None declared.