Awareness concerning the need for adequate patient information during cancer treatment has increased over the last decade. Multiple studies have shown that improving patient information provision results in higher adherence to oral anticancer drugs[1–3] as well as a better quality of life.[4–6] Adequate patient information remains a challenge though, as several reviews have summarized.[4,7–9] At the time of diagnosis, patients might experience overwhelm which can hamper their ability to recall information at later time points.[10,11] In addition, when patients start a complex treatment regimen, the amount of information they receive is vast.
In current practice, the majority of patients are treated in an ambulatory setting. This not only provides obvious benefits for patients but also limits the amount of time for contact between healthcare professionals and patients. In the Netherlands, all oncology patients are therefore provided with a ‘case manager,’ who becomes there first point of reference within the hospital and who guides the patient through his or her treatment path. The case managers are nurse practitioners or specialized oncology nurses, who have taken additional training after receiving their nursing qualification. In addition to the oncology case manager, patients also receive information about chemotherapy and supportive care drugs from their treating physician or nurse practitioner, the hospital pharmacy, and from the nurses in the day-care center. All oral oncolytics are dispensed by the hospital pharmacy because of national reimbursement policies. Information can be given orally, through leaflets, through patient portals, and through healthcare apps. In this complex tangle, the patient has to find his or her way to the information he or she requires. Hence, it is pivotal that the information that is given by the different caretakers is not conflicting and meets the patients individual needs, as inadequate information can cause for example anxiety and stress.
In the OLVG hospital in Amsterdam, the Netherlands, the multiprofessional oncology treatment team wanted to standardize the information on chemotherapy and supportive medication for patients. To this aim, the general clinical care pathway of the oncology patient who receives antineoplastic drug treatment was mapped out, identifying the different moments where information can be given and by whom.
In the present study, we describe the process of appointing different aspects of information on chemotherapy to the respective healthcare professionals, as well as the subsequent survey into patient satisfaction with that information.
The study was conducted in the OLVG hospital, Oost in Amsterdam, the Netherlands. The OLVG oncology department comprises 48 inpatient beds and 17 outpatient seats (day-care unit) and sees approximately 200 new oncological patients annually. In the day-care unit, adult patients with solid as well as hematologic malignancies are treated. Annually, 13,000 parenteral anticancer drugs are administered to these oncology patients, whereas the outpatient pharmacy of the hospital dispenses 1600 courses of oral anticancer drugs. Information on treatment is given to each patient orally, by leaflets (treatment and drug specific), and electronically through information on the website of the hospital. The Medical Ethics Committee of the Hospital approved our study.
Patient clinical care pathway mapping
In 3 multidisciplinary meetings (including an oncologist, a hemato-oncologist, nurse practitioner, oncology nurses, day-care nurses, and clinical pharmacists), the patients’ general clinical care pathway was mapped out, and time points for information provision through direct contact with one of the healthcare professionals were identified. Next, the different time points were assigned to one of the healthcare professionals by consensus and the content of that information was agreed upon by the team.
Information satisfaction measurement
During a 1-week period in 2017, all patients treated with anticancer drugs in the ambulatory oncology day-care department were asked to participate in the survey. No exclusion criteria were incorporated into the study. Participation was voluntary and anonymous.
To measure the satisfaction with information, the Satisfaction with Information about Medicines Scale (SIMS) was used, a tool that has been validated for oncology as well as in other therapeutic fields. It is a questionnaire consisting of 17 items that address multiple issues of drug treatment. Patients are asked to rate the information that was provided on a 5-item scale: ‘too much,’ ‘about right,’ ‘too little,’ ‘none received,’ ‘none needed.’ Subsequently, satisfaction is scored with one point if the patient answered ‘about right’ or ‘none needed’ and zero points for the other categories.[12,13] In addition, patients were asked for demographic factors which might influence satisfaction scores, such as sex, age, and educational level. Because many oncology drugs have teratogenic properties, we added an 18th question in the survey on effects of treatment on possible pregnancy. This item is not present in the original SIMS questionnaire, but we found it to be relevant for our population.
The patient care path was mapped and analyzed in Visio and Word (Microsoft Office 2016, Redmond, WA, USA). The results from the patient survey were analyzed using Excel (Microsoft Office 2016, Microsoft, Redmond, WA, USA).
Information provision during the patients’ clinical care pathway
In 3 meetings, the entire clinical care pathway was discussed, and a graphic representation of which healthcare professional provides which information per contact was drawn up. As shown in Table 1, the case manager (nurse practitioner or specialized oncology nurse) is responsible for a large portion of information provision. The pharmacy is dedicated to performing medication reconciliation with the patient and providing specific information on drug–drug interactions and side-effects of treatment. Some information is repeated by different healthcare workers at different time points, which is intended to stress important topics. The content of the information is harmonized by agreeing to use the same sources by all healthcare workers, thus preventing the possibility of providing conflicting information.
A total of 50 questionnaires were handed out, yielding 48 completed surveys (response rate of 96%). Patient demographics are given in Table 2. Considerably more women than men participated in the study, and the educational level was fairly high (which is consistent with the demographics at the location of the OLVG hospital).
The detailed results of the questionnaires are outlined in Table 3. Overall, the satisfaction was high: 81% (95% confidence interval 71%–92%). In addition, no item scored a satisfaction of lower than 60%. If patients were dissatisfied, it was because of not enough information in general, only the items about side-effects and what to do if patients forget a dose had a very small number of responses in the ‘too much information’ category. The items with the lowest satisfaction scores concerned: ‘how can you tell if the treatment is working,’ ‘what are the risks of getting side effects,’ ‘whether the medicine interferes with other medicines,’ ‘whether the medicine will affect your sex live,’ and ‘what you should do if you forget a dose.’ The item on effects on sexuality had the lowest overall score with a satisfaction rate of 63%.
The study showed that it is possible to achieve a high satisfaction rate on information about medicines in an oncology patient population. The outlining of the entire care path of these patients’ treatment enabled us to make team decisions on who gives which information at each contact. By reaching consensus on providing patient information, we were able to reduce the possibility of giving conflicting information. In addition, we decided to repeat some of the information on multiple time points, as it is well known that patients receive so much information that it is often difficult for them to remember everything.[10,11] We also left enough time in each consult to ask open questions to retrieve possible individual information queries patients might have. After implementing this method of information provision, we measured information satisfaction scores using a validated tool. All of our patients knew the name of the drugs they were on, and the vast majority could also state what the medicine is for, how long they need to be on the medicine, how to use it, and how to get a further supply. The items with the lowest satisfaction concerned possible effects of the drugs on the sex life and what to do if you forget a dose.
In harmonizing the information provision for oncology patients, pharmacists and pharmacy technicians play a smaller role than in some previous reports from other countries. For example, 1 French study including a large survey in 204 patients showed positive effects on satisfaction with the treatment process after implementing a pharmacy-led series of information tools. A Spanish study measuring information satisfaction after introduction of a pharmaceutical counseling service by the hospital pharmacy also demonstrated a positive outcome for this type of drug information provision. Finally, a Canadian publication describes a pharmacist-directed seamless care program in the ambulatory clinic which included patient counseling by a pharmacist. The results showed a significant positive impact on clinical outcomes. Our setting is different in the perspective that we have highly trained and qualified nurse practitioners and specialized oncology nurses, who act as case managers in guiding the patients through their treatment. They have an outstanding level of knowledge on cytostatic drugs, their effects and side-effects, as well as on self-management of physical and psychological complaints during treatment. The knowledge of the pharmaceutical healthcare staff is additive to that of the nurse practitioners and oncology nurses (and doctors) in the fields of medication reconciliation and drug–drug interactions. Hence, it was obvious that the information provision of the pharmacy to the patients focuses on those items.
Our results are in line with previous studies on patient satisfaction with drug information. Two large Dutch trials examining patient satisfaction have been published previously. The first focused on hemato-oncological malignancies and included 458 patients. Results showed that although high satisfaction with information was reported, the information provision could still be improved according to 41% of the patients. In addition, higher satisfaction was significantly associated with better quality of life. The second study focused on patients treated with oral anticancer agents. This study (n = 208) reported that the dissatisfied patients were dissatisfied on the basis of being given too little information, in contrast to too much. In addition, just as in our present work, the item about effect on sex life showed the lowest satisfaction rate of all items investigated. Studies, using other measurement tools than SIMS, also report similar trends. For example, a trial from the United Kingdom in 214 patients with breast or prostate cancer reported high levels of information satisfaction, which were again correlated to quality of life, and an American trial specifically demonstrated an unmet need for information on sexual issues in a panel of 109 cancer survivors. Finally, a very large German study including 4020 patients found relatively high information satisfaction levels of 72% to 88%, but patients with lower satisfaction rates reported more anxiety, depression, and lower quality of life.
Our study included a real-life population of patients; no exclusion criteria were used. Although we did no prior measurement, we believe that attuning and harmonizing information provision to cancer patients in a multidisciplinary treatment team improves patients’ satisfaction. The questionnaire that we used to evaluate patient satisfaction is validated and easily implementable as a tool to measure patients’ satisfaction. Thereby, it could even be used as a way to continuously monitor this important indicator. Some limitations to our study have to be taken into account though, when interpreting the results. First, we measured patient satisfaction in only 1 center, and the patient population in the center of Amsterdam is characterized by a relatively high literacy and educational level. Hence, the results cannot be extrapolated one-on-one to other regions in the Netherlands. Second, we only included ambulatory patients with intravenous chemotherapy (either fully iv therapy or combined iv/oral therapy) and measured the satisfaction in a relatively small sample; so it was impossible to calculate possible correlations between satisfaction and certain characteristics such as sex or tumor type. Third, participation was voluntary, which could lead to some bias in the results, as often the patients who are most or least satisfied will be outspoken and willing to fill in surveys, whereas patients with lower literacy or nonnative speakers are probably more likely to decline participation. Fourth, we did not include quality of life or adherence measurements; so we cannot ascertain the effects of the information satisfaction on patients’ well-being or clinical outcome. Finally, there might be a difference between the ambulatory patients in our study and the previous studies mentioned, with clinical patients in terms of information needs, as the clinical patients often suffer from more severe sickness than the outpatients.
Some questions regarding information provision and satisfaction remain unanswered. Hence, we propose that further studies should focus on identifying if introducing combinations of oral and electronic information (apps or other forms of eHealth) can improve patient satisfaction with information on anticancer drugs. In addition, further tailoring the information to the individual needs of patients seems a logical and smart option, but it has not been studied extensively.
Harmonizing information provision to patients on anticancer drug treatment between different healthcare professionals is feasible. Identifying which information is given when and by whom in the patients clinical care pathway results in high levels of information satisfaction in oncology patients.
Study conception and design: PO, MS, MC
Acquisition of data: PO, MS
Analysis and interpretation of data: PO, MC
Drafting of manuscript: MC
Critical revision: PO, MS
Conflicts of interest statement
There are no conflicts of interest to disclose.
Regular institutional funding was received.
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