Background: Although hepatitis C virus (HCV) treatment has improved dramatically, decision making related to treatment continues to be complex and challenging. Little data exists regarding patient information needs and preferences in the direct-acting antiviral (DAA) era. Methods: We evaluated patient-perceived information needs and preferences when making HCV treatment decisions. A cross-sectional survey was conducted at two Ottawa-based sites: a hospital-located outpatient viral hepatitis clinic, and a community-based HCV patient support program. Results: One hundred and seventeen patients completed the survey: the mean age was 52.1 years (range 23 to 78), and 64% were male, 81.5% were White, 48.6% were on disability support or leave, and 60.3% had a high school education or less. Although traditional sources of health information (e.g., direct communication with health care providers) remain preferred by most, a range of preferences were reported including utilization of newer technologies (e.g., emails, text messages). The telephone was rated as the preferred method of contact for medication reminders, with daily or weekly communication reported as most helpful. White participants, those more highly educated, and those with a higher income all indicated a greater acceptability for e-mail and/or text message communication for medication and appointment reminders. Conclusions: There is no single preferred source or method of communicating with patients. These findings indicate that a tailored multi-pronged approach, including newer technologies, is more likely to effectively educate and communicate with the heterogeneous population of individuals living with HCV.

Informed decision making is critical for patients in choosing treatment options. It has been linked to enhanced patient knowledge and involvement in care (1,2), improved accuracy of patient expectations regarding treatment, reduced decisional conflict (2), and improved decision quality (3). Informed patients tend to make different decisions than less informed recipients of health care (4). Research also suggests that informed decision making is an important contributor to improved cost-effective use of health care resources (5). Although some studies have found that well-informed patients achieve improved adherence to treatment and better health outcomes, this area requires more evaluation (2). Even though so-called real world cohorts suggest that adherence may be less critical in the DAA era, experience and common sense suggest that even with highly curative DAA therapy, there is a threshold of poor adherence that will lead to diminished cure rates. Therefore, optimizing communication remains relevant.

In order to reach informed decisions, patients’ information needs and preferences need to be understood. Patients access information through various channels including discussion with family and friends, conventional media, and the Internet. Dissemination of information can involve passive and active approaches (6). The use of multiple information channels (7) and both active and passive approaches (8) are generally recommended as best dissemination practice. Preference regarding source and format of information varies and the ideal dissemination strategy depends on the needs and preferences of patients (6,9,10). Patient-provider communication is often a preferred source of health-related information even with the increased accessibility to other sources of information (11). A Canadian-based needs assessment of hepatitis C virus (HCV) patients suggested that the Internet, brochures, and workshops were preferred formats for obtaining information (12). Phone/e-mail, apps, and text messaging were identified as lower priority modalities.

Although treatment for HCV has improved significantly, decision making related to treatment remains complex given patient engagement, treatment adherence, and funding challenges. Research to date has focused on interferon-based treatments. Little data is available regarding information needs and preferences in the direct-acting antiviral (DAA) era. We evaluated patient-perceived information needs and preferences for mode of communication when making decisions related to HCV treatment.

Participants were identified from two sites including The Ottawa Hospital Viral Hepatitis Program (TOHVHP) General Campus Clinic site and a TOHVHP Community Liaison Program community partner site located in the Ottawa downtown core. Participants from the TOHVHP site were recruited between March and December 2016. Participants could complete and return the survey while waiting for their appointment. Others completed at home and returned. Participants from the community-based HCV patient support site were recruited during a December 2016 drop-in clinic HCV educational breakfast and completed the survey at that time. Consenting participants were included if over the age of 18 years, ever diagnosed with HCV, and were able to complete the survey in English. HCV treatment naïve and experienced participants were included. Participants received $10 for completing the questionnaire. The study was approved by the Ottawa Health Science Network Research Ethics Board (REB #2015-0909).

Measures

Patient perceptions were assessed through survey questions on the quantity, source, method, and quality of information received, in addition to 11 items taken from the Patient Assessment of Chronic Illness Care questionnaire (13). The survey included questions on demographics, disease status (e.g., presence of cirrhosis, time since diagnosis, previous treatment experience), HCV risk factors, and preferences related to method of appointment and medication reminders. Administrative data was extracted from a clinic database for the hospital site participants, including demographic and health information (e.g., HCV disease status, HCV treatment history) (REB #2004-0196); this information supplemented survey collected data. Opinions regarding HCV-specific information provision to patients was obtained. As well, preferences regarding appointment and medication reminders were captured.

Data entry accuracy was verified for approximately 20% of the data and all data were checked for outliers and discrepancies prior to any analyses. Missing values were treated as missing. Standard descriptive statistics were used to summarize the characteristics of the participants and their information needs and to make comparisons among different groups of respondents. To assess for differences in reported information needs and preferences between patient groups, Chi-square tests were run for nominal dependent variables across categorical independent variables (treatment experienced vs. naïve; gender—male vs. female; ethnicity—White vs. other; site—hospital vs. community; education—completed high school vs. less than high school; income—up to $29,999 vs. $30,000 or more). Prior to running the Chi-square tests, cells of the dependent variables were pooled to ensure expected frequencies of greater than five, as follows: most helpful single source of information about HCV prior to treatment (family or TOHVHP physician vs. other), preferred method of appointment reminder (phone call/letter vs. e-mail/text), and preferred method of medication reminder (phone call/letter vs. e-mail/text). SPSS version 24 was used for statistical analyses.

At the hospital site, 141 participants were approached and 117 agreed to participate (83%). Ninety-two of 117 (78.6%) completed and returned the survey. Common reasons for declining participation included not being interested, not having the time, or not being able to read or speak English. Twenty-three of 24 (95.8%) participants approached at the community site completed and returned the survey.

The mean overall age of participants was 52.1 years (range 23–78) (Table 1). Sixty-four percent were male, 81.5% were White, and 48.6% were on the Ontario Disability Support Program (ODSP) or Disability Leave. Sixty percent reported a high school education or less.

Table

Table 1: Demographic characteristics of participants at two sites* (n = 115)

Table 1: Demographic characteristics of participants at two sites* (n = 115)

Characteristic n %
Gender (male/female) 114 64/36
Age, mean (SD) (range) 114 52.1 (11.53; 23–78)
Relationship status (%) 112
  Single 42.0
  Married or steady partner 39.3
  Separated 14.5
  Widowed 4.5
Born in Canada (%) 111 82.9
Ethnicity (%) 108
  White 81.5
  Aboriginal 9.3
  Black 1.9
  Asian 0.9
Past treatment for HCV (%) 112
  Treatment naïve 57.1
  Currently in treatment 7.1
  Completed treatment but not cured 7.1
  Treatment experience but did not complete 7.1
  Treated and cured 21.4
When diagnosed with HCV (%) 110
  Less than 6 months ago 0.9
  6 months to 1 year ago 9.1
  2 to 5 years ago 20.9
  6 to 10 years ago 18.2
  More than 10 years ago 50.9
Education (%) 111
  Grade 8 or less 18.0
  Completed high school 42.3
  College diploma 28.8
  University degree 10.8
Employment status (%) 111
  ODSP/disability leave 48.6
  Working full-time 27.0
  Retired 13.5
  Social assistance 4.5
  Other (e.g., working part-time) 6.3
Housing status (%) 109
  Renting 53.2
  Own home 27.5
  Supportive housing or group home 9.1
  Homeless 7.4
  Other (e.g., correctional facility) 2.7
Family income (%) 109
  0–$29,999 53.2
  $29,999–$59,999 14.7
  $59,999–$89,999 5.5
  $89,999–$119,999 7.3
  $120,000 or more 2.7
  Prefer not to answer 9.2
  Do not know 7.3

* The cross-sectional survey was conducted at two Ottawa-based sites: The Ottawa Hospital Viral Hepatitis Program (TOHVHP) General Campus Clinic site, and a TOHVHP Community Liaison Program community partner site located in the Ottawa downtown core

Among hospital site participants, the reported reasons for attending a clinic visit included evaluation for HCV treatment [obtaining more information (23.9%); start/follow-up for treatment (37.0%), and an HCV/liver check-up (42.4%)]. Most participants reported having a past appointment within the past year (53.0% within the past year/27.7% within the past month). Most participants were diagnosed with HCV 2 or more years ago (90.0%) and 57.1% were HCV antiviral treatment naïve. 10.4% were HIV co-infected. Few participants self-reported very good (19.5%) or excellent (1.8%) health. Many participants reported past treatment for mental health (50.8%), alcohol abuse (39.2%), or substance abuse (44.2%). Sixty percent reported a history of injection drug use and 72.5% reported having sniffed, snorted, smoked, or orally administered recreational drugs (Table 2).

Table

Table 2: Patient-reported HCV risk factors and risk behaviours at two sites* (n = 115)

Table 2: Patient-reported HCV risk factors and risk behaviours at two sites* (n = 115)

Risk factor/risk behaviour Number of valid responses Affirmative responses (%)
Blood transfusion or organ transplant prior to 1992 112 22.3
Clotting factor concentrate prior to 1992 112 6.3
Long-term hemodialysis 111 5.4
Worked in medical field and had blood exposure 113 10.6
Treated for STD 114 27.2
Tattoo or body piercing 113 57.5
Incarceration 112 50.9
Injected drugs 114
  Yes, in past 6 months 17.5
  Yes, but not in past 6 months 42.1
Sniffed, snorted, smoked, or orally used substances 113
  Yes, in past 6 months 27.4
  Yes, but not in past 6 months 45.1

* The cross-sectional survey was conducted at two Ottawa-based sites: The Ottawa Hospital Viral Hepatitis Program (TOHVHP) General Campus Clinic site, and a TOHVHP Community Liaison Program community partner site located in the Ottawa downtown core

When asked about the amount of HCV information received during their last clinic appointment, 56.6% of hospital site participants reported ‘just the right amount’. No participants reported that they received ‘too much’ information. Hospital site participants reported receiving information about HCV from a range of sources including physician or nurse at HCV clinic, community worker, family/friends, brochures, and the Internet (Table 3). Meeting with an HCV clinic doctor was identified as the single most helpful pre-treatment source of information (63.7%). This was followed by HCV clinic nurses (55.7%). Community-based HCV information sources were noted to be important as well: family doctor or nurse practitioner (45.6%). Health information source preferences were consistent before and during HCV treatment.

Table

Table 3: Preferences for source of health information: before starting and while on HCV treatment (n = 92; hospital site* only)

Table 3: Preferences for source of health information: before starting and while on HCV treatment (n = 92; hospital site* only)

Before or during treatment? n Rated as very helpful Rated as very unhelpful Mean (SD)
Source (%) (%) 95% CI
Family physician or nurse practitioner Before 90 45.6 2.2 1.75 (1.51–1.99)
During 89 38.2 3.4 1.88 (1.67–2.08)
Brochure from a health care provider Before 86 20.9 2.3 2.17 (1.88–2.46)
During 84 14.3 2.4 2.44 (2.15–2.72)
HCV clinic physician Before 91 63.7 0 1.23 (1.11–1.35)
During 88 71.6 1.1 1.27 (1.13–1.41)
HCV clinic nurse Before 88 55.7 1.1 1.42 (1.26–1.57)
During 86 64.0 1.2 1.40 (1.24–1.55)
HCV clinic social worker Before 82 24.4 1.2 2.19 (1.92–2.45)
During 82 24.4 2.4 2.29 (2.03–2.55)
HCV clinic psychologist Before 79 20.3 3.8 2.63 (2.32–2.93)
During 83 20.5 2.4 2.54 (2.27–2.81)
HCV clinic psychiatrist Before 78 15.4 3.8 2.60 (2.3–2.91)
During 79 21.5 5.1 2.69 (2.36–3.02)
Phone call from HCV clinic Before 85 17.6 2.4 2.33 (2.07–2.60)
During 80 22.5 3.8 2.48 (2.18–2.78)
E-mail from HCV clinic Before 79 13.9 6.3 2.81 (2.52–3.11)
During 80 12.5 6.3 2.69 (2.41–2.97)
Text from HCV clinic Before 80 12.5 5.0 3.04 (2.77–3.32)
During 77 14.3 9.1 2.96 (2.65–3.26)
HCV website Before 80 37.5 3.8 1.88 (1.59–2.16)
During 81 30.9 6.2 2.13 (1.82–2.43)
Smartphone application with HCV treatment information Before 77 23.4 5.2 2.44 (2.12–2.75)
During 76 19.7 5.3 2.52 (2.23–2.81)

* Survey was conducted at The Ottawa Hospital Viral Hepatitis Program (TOHVHP) General Campus Clinic site

† Each source of information was rated on a 5-point Likert scale (1 = very helpful, 2 = helpful, 3 = neither helpful nor unhelpful, 4 = unhelpful, and 5 = very unhelpful)

Participants rated their single most preferred method of contact for appointment and medication reminders (Table 4). For appointment reminders, phone was rated as preferred by 64%, e-mail by 16.2%, and text by 9.9%. For medication reminders, communication by phone was preferred by 51.5%, text by 28.7%, and e-mail by 11.9%. Less than 10% indicated a letter as the preferred method. Participants reported daily (36.7%) or weekly (30.3%) medication reminders as most helpful.

Table

Table 4: Preferences for method of receiving reminders, two sites* (n = 115)

Table 4: Preferences for method of receiving reminders, two sites* (n = 115)

n Rated as very helpful Rated as very unhelpful Mean (SD)
(%) (%) 95% CI
Appointment reminders
  Phone call 111 70.3 0.9 1.32 (1.18–1.46)
  E-mail 91 53.8 5.5 1.90 (1.59–2.22)
  Text message 94 43.6 5.3 2.03 (1.74–2.33)
  Letter 94 28.7 1.1 2.21 (1.96–2.45)
Medication reminders
  Phone call 100 50.0 1.0 1.95 (1.68–2.23)
  Text message 92 38.0 3.3 2.16 (1.85–2.47)
  E-mail 91 29.7 5.5 2.27 (1.97–2.57)
  Letter 90 25.6 3.3 2.57 (2.29–2.86)

* The cross-sectional survey was conducted at two Ottawa-based sites: The Ottawa Hospital Viral Hepatitis Program (TOHVHP) General Campus Clinic site, and a TOHVHP Community Liaison Program community partner site located in the Ottawa downtown core

† Each source of information was rated on a 5-point Likert scale (1 = very helpful, 2 = helpful, 3 = neither helpful nor unhelpful, 4 = unhelpful, and 5 = very unhelpful)

White participants indicated a stronger preference for medication reminder by text/e-mail (33.8%/11.7%) as compared to non-White patients (12.5%/0%) (p = 0.075). A greater proportion of hospital site participants reported a preference for medication reminders by text/e-mail (32.9%/15.2%) compared to those from the community site (13.6%/0%) (p = 0.004). A relationship was found for medication reminder preference by education level. Those with a high school education or greater were more likely to report a preference for text/e-mail for medication reminders (32.5%/13.8%) compared to those with less than a high school education (11.8%/0%) (p = 0.008). A similar trend was noted for appointment reminders (p = 0.085). Participants with lower incomes (< $30,000) were more likely to report a preference for a phone or mail appointment (70% and 10% vs. 40% and 6.7%, p = 0.007) and medication reminders (76.5% and 11.8% vs. 47.5% and 6.3%, p = 0.018) compared to participants reporting incomes over $30,000. Treatment experience and gender did not predict preferred information source or mode of appointment or medication reminder preference (data not shown).

We sought to explore the information needs and preferences of patients with HCV with the overarching goal of strengthening patient engagement in DAA treatment. Many HCV patients (about half) reported that they would like more information related to topics ranging from treatment options, risks, and resources. Preferences for source of health information were consistent before and during HCV treatment (Table 3). The most common and preferred source of HCV information were physicians and nurses. Although traditional sources of health information remain favoured among most, a range of preferences were reported including other health care providers and via newer electronic technologies. This finding is consistent with other research (14). The first point of contact in HCV care is typically a physician, nurse, or nurse practitioner. These professions have an important role in providing patients with HCV information and in engaging other interdisciplinary health care providers. Of note, our data indicate that community-based physicians and nurses can play an important role in communicating HCV information; even before patients engage in specialized HCV treatment programs.

Some participants preferred newer communication strategies over traditional modes of communication. Yet, the phone remains the preferred method of contact for reminders with daily or weekly medication reminders reported as most helpful. This finding is consistent with previous HCV patient needs assessment which indicated that mobile technologies represent a less preferred format for accessing information for this population (12). Although a phone call was rated as the preferred method of receiving reminders by the highest proportion of patients, a relevant proportion also indicated that e-mail and/or text message would be helpful, suggesting utility of these alternative methods of contact. Not only do these alternative communication modalities present opportunities to improve the cost effectiveness of service delivery, they also allow for more frequent contact with patients. This may increase treatment engagement and adherence. Our evaluation suggests differences in preference by socio-demographic status (ethnicity, education level, and income) and location seeking HCV care. Consistent with past research, lower education and income groups preferred traditional sources and methods of receiving information. In our survey, White participants, those with high school education or greater, income over $30,000, and participants seeking HCV care from the hospital site were more likely to report a preference for text/e-mail reminders (14). We acknowledge that those with higher socioeconomic status may be more likely to possess electronic devices. Future evaluations should explore this potential confounder.

Prior research has highlighted the importance and effectiveness of using multiple strategies, sources, and mediums for disseminating health information (7). Our survey supports this idea. As a single preferred source or method of communicating with patients does not exist, we recommend a tailored multi-pronged approach to communication along each step of the HCV care and treatment cascade. Consideration of patient preference is paramount in order to provide quality care and improve patient outcomes.

Our sample consisted of patients recruited primarily from one hospital-based clinic. Although this could reduce the generalizability of our findings, the socio-demographic profile of our sample is broadly representative of patients living with HCV. Moreover, exclusion criteria were few and a broad range of participants were included in terms of HCV treatment experience. The inclusion of a subsample from a community partner clinic enhances the generalizability of our findings. Future research could include additional samples from diverse community sites to further ensure representation from patients not engaged in hospital-based HCV care. Not all individuals approached to complete this questionnaire agreed to participate which may have introduced a section bias. Unfortunately, we did not capture characteristics of those declining participation. The self-reported nature of the study is another limitation inherent in survey research. To minimize this limitation, health care providers were not present during the completion of the survey and researchers left participants to complete the survey autonomously except if they requested clarification or assistance. In this way, factors such as the social desirability bias were limited.

In conclusion, the results of this study reveal diversity in individual needs and preferences related to HCV treatment information. Although some differences were found related to key socio-demographic factors, the overall findings support the conclusion that it is most important to tailor information and communication strategies based on patient preferences. Furthermore, expanding on communication strategies to include both established and newer communication modalities is a promising approach for improving patient engagement in HCV care.

Conceptualization, JB, CC; Methodology, JB, CC; Analysis, JB, CC; Writing – Original Draft, JB, CC; Writing – Review & Editing, JB, CK, LB, MK, CC.

No funding was received for this work.

The authors have nothing to disclose.

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