Supportive Care
Valerie Burger, RN, MA, MS, OCN®— Associate Editor
Tracking and Journaling the Cancer Journey Carol J. Hermansen-Kobulnicky, PhD, RPh, and Mary Anne Purtzer, PhD, RN
Clinicians sometimes suggest to patients that they keep track of illness-related is sues. Self-monitoring is a helpful term to describe these at-home activities that yield essential information for self-management. The purpose of this article is to create greater awareness of the opportunities (and potential shortcomings) of patient self monitoring for oncology nursing practice. Carol J. Hermansen-Kobulnicky, PhD, RPh, is an associate professor in the School o f Pharmacy and an adjunct faculty member in the Fay W. W hitney School o f Nursing, and Mary Anne Purtzer, PhD, RN, is an associate professor in the Fay W. W hitney School o f Nursing, both at the University o f Wyoming in Laramie. The authors take full responsibility for the content o f the article. The article was supported, in part, by a faculty Grant-in-Aid Award from the University o f Wyoming. No financial relationships relative to the content o f this article have been disclosed by the editorial staff. Hermansen-Kobulnicky can be reached at cjhkobul@ uwyo.edu, w ith copy to editor at [email protected]. Key words: communication; self-m onitoring; symptom management; survivorship; patient/public education Digital Object Identifier: 10.1188/14.CJON.388-391
any clinicians suggest that their patients keep track of som e thing related to their illness. This article presents ideas pertaining to patients’ journaling or tracking aspects of th eir cancer experience. Drawing front a definition by Wilde and Garvin (2007), self-monitoring is the intentional measuring, recording, or observing of symptoms, sensations, daily activities, and/or thoughts and emotions. Greater awareness helps provide information to the patient and the health professional, improving the patient’s ability to selfmanage (Wilde & Garvin, 2007). About one-third of patients with cancer do some form of self-monitoring without outside intervention (Hermansen-Kobulnicky, 2009; Hermansen-Kobulnicky, Wiederholt, & Chewning, 2004), which nurses (and other health professionals) should consider in the process of care. The goal of the current article is to create a greater aw areness of patients w ith cancer who self-monitor, along with the potential benefits (and shortcomings) of self-monitoring, and to help nurses to consider the potential opportunities for self-monitoring in their practice sites.
M
388
Patient self-monitoring is discussed in the context of various illnesses in cluding asthma (Myers, 2002), migraine headaches (Baos et al., 2005), mental illness (Finnell & Ditz, 2007), and dia betes (Rossi et ah, 2009). For example, patients who suffer from migraine head aches may track their migraines, writing down variables, such as time of day and diet, to better determine what triggers the headaches. Regarding patients with cancer, one opportunity for patient self monitoring is in the area of pain manage ment (de Wit et ah, 1999; Marceau, hink, Jamison, & Carolan, 2007; Schumacher et ah, 2002); however, researchers are beginning to show the importance and po tential for patient self-monitoring through out the cancer continuum (HermansenKobulnicky, 2009; Hermansen-Kobulnicky et ah, 2004; Hermansen-Kobulnicky & Purtzer, 2013; Hoekstra, de Vos, van Duijn, Schade, & Bindels, 2006; Maunsell, Al lard, Dorval, & habbe, 2000; Purtzer & Hermansen-Kobulnicky, 2013). Self-monitoring is known to benefit patients; however, less is known about the direct benefits to practitioners. Patient benefits include a greater sense of control August 2014
through better use of information and patients’ improved ability to resume nor mal activities, as well as empowered abil ity to self-advocate through the complex healthcare system (Purtzer & HermansenKobulnicky, 2013). In addition, self monitoring has been shown to improve symptom management (Hoekstra et ah, 2006; Schumacher et ah, 2002). Anec dotal reports and studies also highlight the usefulness of patient self-monitoring for improving communication between patients and providers (Fayers, 1995; H erm ansen-K obulnicky et ah, 2004; Maunsell et ah, 2000; Schumacher et ah, 2002; Tucci & Bartels, 1998). Although the literature supports the use of self-monitoring, what oncology profes sionals think or the extent to which they apply self-monitoring principles when working with their patients is not known. The current pilot study was intended to gather nurse perspectives on patients with cancer who self-monitor and the potential for self-monitoring to impact patient care.
Methods A cross-sectional, descriptive pilot study of oncology nurses’ beliefs and behaviors regarding patients with cancer who self monitor was conducted using an anony mous, self-administered survey. The study received institutional review board approv al, and researchers gained access to oncol ogy nurses via contacts made through two regional Oncology Nursing Society (ONS) affiliates. Data were collected from the sampling frame during an eight-week period. Hard-copy survey booklets were distributed to nurses attending a profes sional dinner program, with some nurses taking copies back to their practice sites. In total, 43 copies of the hard-copy survey were distributed; however, how many in dividual survey copies reached a potential
Volume 18, Number 4
Clinical Journal of Oncology Nursing
respondent is not certain. The same sur vey was reproduced electronically using WorldAPP KeySurvey software, and the URL for the online survey was distributed w ithin an email to members of the two organizations. A monetary incentive was provided in the form of tw o prize draw ings, each for a $130 money order to be spent on ONS and the local ONS affiliate membership for the coming year. The survey instrum ent was pretested among five health professionals, testing for readability, content validity, tim e for completion, and formatting. Based on pre testing, it was revised, finalized, and formu lated into an online survey and a hard-copy booklet. The hard-copy booklet, a selfaddressed stamped envelope for returning the completed survey, and a postcard were included in the packet. The postcard could be mailed separately by the respondent for the drawing entry. The online survey prom pted respondents to enter into a sepa rate survey to collect contact information for the drawing, ensuring anonymity. The survey content included questions related to respondent beliefs about patient self-monitoring in general, beliefs about self-monitoring in their ow n patient-care practices, and self-reported behaviors re garding patient self-monitoring and patientnurse interactions. A four-point rating scale was used to capture how true each belief or behavior-based statem ent was for respondents. Response choices were “not true,” “somewhat or sometimes true,” “very or often true,” “always true,” and “NA” for not applicable. In addition, knowl edge of patient self-monitoring practices (what is self-monitored and w hat tools are used) and nurse preferences for these were sought using simple checklists. Respon dents w ere asked to “check all that apply.” Respondent characteristics also w ere gathered to describe the sample. Variables included professional degree, oncology certification status, oncology role, practice setting, and years of oncology practice. Respondents also were asked if they work directly w ith patients, w hich resulted in one respondent being rerouted to the end of the online survey to avoid asking ques tions not relevant to his or her role. Lastly, respondents w ere asked if they personally self-monitored things related to their health and well-being. Response categories were “No, I typically don’t,” “Yes, I occasionally do, but it depends on my health status,” and “Yes, I do regularly.” Nurses also were invit C lin ic a l J o u rn a l o f O n c o lo g y N u rs in g
TABLE 1. Respondent Beliefs About Patient Self-Monitoring (N = 23) Variable
X
SD
Patients w ho self-m onitor cope better w ith their cancer.
2.74
0.62
Patient self-monitoring behaviors can improve a patient's quality of life.
2.87
0.63
Self-m onitoring can decrease patient compliance.
1.39
0.5
Patient self-m onitoring is im portant at the beginning o f treatm ent.
3
0.74
A key tim e fo r patients to self-m onitor is at change o f treatm ent.
2.7
1
Patients w ho have completed treatm ent could benefit from self-m onitoring.
2.95
0.58
Patients lack the skills to self-m onitor in clinically useful ways.
1.48
0.59
Helps me problem solve to decrease symptom burden
3.18
0.59
Helps me obtain accurate inform ation
3
0.53
Helps me obtain inform ation efficiently
3.05
0.49
Helps me gain adequate inform ation
2.95
0.65
Helps me understand a patient's perspective
3.41
0.59
Provides inform ation too subjective for me to use
1.57
0.75
Results in excessive follow -up requests by the patient
1.68
0.65
Makes point-of-care w ith a patient too tim e consuming
1.64
0.58
Helps me develop partnerships w ith patients
3.33
0.48
Helps me develop rapport w ith a patient
3.41
0.5
Results in unneeded detail about the patient's experience
1.45
0.6
R e spo nde nt B eliefs
P a tie n t S e lf-M o n ito rin g
Note. Mean scores are based on response choices o f 1 (not true), 2 (somewhat or always true), 3 (very or often true), and 4 (always true).
ed to comment on what they keep track of, how they keep track, and how they use the information. Data analysis was completed using Microsoft Excel® and consisted of descriptive statistics to report frequencies, means, and standard deviations, as well as content analysis of w ritten comments.
Results Twenty-three responses w ere obtained (11 via online survey, 12 via mailed hard copy survey). No response rate can be calculated because many nurses may have received both the hard-copy survey and the URL via email, and, therefore, the total num ber of nurses receiving the survey or URL is unknow n. All respondents w ere nurses. Ten w ere oncology certified and 14 had a bachelor’s degree. Respondents’ years of oncology practice ranged from
V o lu m e 18, N u m b e r 4
S u p p o rtiv e C are
2-33 years. Because one respondent in dicated not having current direct patient contact and a different respondent system atically skipped tw o face-to-face pages of the hard copy survey, few er than 23 re sponses are available for some questions. Averaging responses, nurses indicated that they believe 43% of their patients self m onitor (SD = 24%, range = 10%-100%). Beliefs about patient self-monitoring are reported in Table 1, highlighting perceived benefits and shortcomings. The items with the highest scoring means w ere those that related to understanding the patient per spective, developing rapport, and partner ing w ith the patient. A benefit to nurses is that patient self-monitoring can improve the quality of inform ation available. Re sults also showed that all nurses believe that self-monitoring improves the quality of inform ation available and offers at least 38 9
TABLE 2. Nurse Report of Self-M onitoring Tools Used by Patients and Nurse Preferences fo r These Tools (Frequencies) (N = 23) Tool
How Patients
How Nurses Prefer Patients
Self-M onitor
to Self-Monitor
Resources given by the cancer center
18
19
Journal or notebook
18
17
Calendar or datebook
16
19
Three-ring binder
12
13
Post-it® notes, scraps of paper
9
2
Smartphone and tab let apps, or equivalent
7
14
Computer software (e.g., Word®, Excel®)
6
10
Internet portal
4
6
Other
3
-
N o te. Participants could choose more than one tool.
some benefit to patients’ quality of life and symptom management. Nurses reported that self-monitoring sometimes results in excessive follow-up requests by patients, time-consuming point-of-care, subjective information, and unneeded details about the patient’s experience. Results showed a notable amount of variation on some items related to the tim ing of patient self-monitoring and the use of technology. Some nurses believed the time of treatment change is always a good time for self-monitoring, whereas others did not believe a good time ever existed. Respondents disagreed about w hether self-monitoring can be important at the beginning of treatment, as well. Also, only two respondents believed that it was more than just sometimes true that patients who have completed treatment (i.e., sur vivors) could benefit from self-monitoring. According to survey results, nurses want their patients to track the effects of cancer on their well-being, limits to what they can do, and treatment compliance. Fewer nurses appear to see the value of patients tracking laboratory values or test results. Two nurses reported that patients keep track of what medications they take and when they take them. Respondents also re ported how patients self-monitor and their preferences for how patients should self monitor (see Table 2). Nurse respondents want more technology used by patients and for patients to use the resources given to patients by the cancer center or clinic. 390
Nurses were asked about their own behaviors, motivation, and confidence to w ork w ith p atien ts around self monitoring. The nurses appeared moti vated, yet some reported lower levels of confidence. All nurses indicated that they instruct patients on how to selt-monitor and that patients do share their observa tions with nurses. The methods by which nurses discuss patient recordings or obser vations vary suggesting likely differences in the roles nurses assume in the process. Lastly, nurses reported their own self m onitoring behaviors regarding their health and well-being. All but two reported using some form of self-monitoring, with 8 of 23 indicating that they self-monitor their health on a regular basis. Nurses kept track of their diet, weight, menstrual cycles, self-breast examinations, medica tions taken, exercise, blood glucose, blood pressure, and laboratory results. They reported self-monitoring using a calendar, smartphone applications (e.g., MyFitnessPal), a tablet computer, a written journal, as well as a paper and pencil log. Nurses used the information gained from self monitoring to improve their health, talk with their physician, motivate themselves, and meet their health goals.
Discussion Study findings show that all nurses surveyed believe patient self-monitoring offered some benefit, and all but two August 2014
nurses reported self-monitoring them selves. Although some shortcomings were noted, they were overshadowed by nurses indicating preferences for the types and content of self-monitoring among patients, which often extended beyond what they had observed in practice. Finding a way to minimize shortcomings and maximize benefits seems warranted. No consensus existed in this pilot sur vey about questions pertaining to the timing; however, findings revealed op portunities to begin the conversation. When a patient is experiencing something new (e.g., when treatment is beginning or changing), they may benefit from self monitoring to gain more accurate and insightful information about their symp toms for proper self-management (Wilde & Garvin, 2007) or to share with their healthcare team (Hermansen-Kobulnicky et al., 2004). Likewise, when survivors experience an unusual symptom, self monitoring and documenting what hap pened (and when) has the potential to pro vide valuable information for follow-up. Nurses should consider self-monitoring opportunities for survivors in light of the American College of Surgeons Commis sion on Cancer’s (2012) standards that include survivorship care plans. In addition, what is important to pa tients may not match w hat is im por tant to nurses and other m em bers of the healthcare team. One example of this discrepancy from the pilot survey was in the tracking of laboratory values or test results. Fewer nurses indicated that they preferred tracking tests and results compared to what patients ap pear to be doing. Research suggests that when patients track laboratory and test re sults, they may experience hope through observing their progress (HermansenKobulnicky & Purtzer, 2013). Similarly, even some of the nurses’ written com ments about their personal self-monitor ing included it being done as motivation and to track progress toward personal health goals. Differences in patient be haviors and nurse preferences for those behaviors suggest delving deeper through the use of assessment questions (Purtzer & Hermansen-Kobulnicky, 2013). Doing so would be consistent with respondents’ beliefs that self-monitoring helps them understand the patient perspective. With patient self-monitoring being a way to fa cilitate communication between patients
Volume 18, Number 4
Clinical Journal o f Oncology Nursing
and h ealth professionals (H erm ansenKobulnicky et al., 2004; Marceau et al., 2007; Schum acher et al., 2002), working w ith patients in that respect offers a way to m eet the com m unication standard of the Statement on the Scope and Standards of Oncology Nursing Practice (Brant & Wickham, 2013). The standard speaks to assessing patient preferences and adapt ing one’s com munication m ethod to meet patient needs (Brant & Wickham, 2013). Nurses surveyed indicated that they all in struct patients about how to self-monitor, at least to some degree; however, w heth er patient preferences are intentionally sought is not clear. The significance of including patient preferences for self-mon itoring is supported by a recent study of patient perspectives and their use of selfstylized self-monitoring tools and systems (Hermansen-Kobulnicky & Purtzer, 2013). A goal for the future is to take w hat was learned from this pilot study and pursue a nationwide study of nurses, oncologists, social workers, and clinical pharmacists to learn how to best help healthcare teams strategically facilitate patient self-moni toring in their practice sites. Facilitating self-monitoring in patients w ith cancer in ways that are acceptable and comfortable to the patient, thereby fostering a more successful clinician-patient relationship, is consistent w ith patient-centered care. L im itations
The survey was a pilot study in a small convenience sample of nurses identified through two regional ONS organizations, and findings are not intended to be generalizable to all oncology nurse populations in the United States. Although the respon dents’ locations were not known, multiple cancer centers and clinics w ere rep re sented based on personal feedback. Data collected revealed only w hether nurses w ere observing patient self-monitoring in practice, not the frequency w ith w hich they observe it or the types of patients w ho self-monitor. Not all patients are in clined to self-monitor and, in fact, some may even ignore their cancer experience as a successful coping mechanism (Miller, 1995). Because of this, it is not advocated that all patients self-monitor.
Conclusions M ounting evidence shows the benefits for self-m onitoring. T he c u rre n t pilot
study of oncology nurse perspectives is, to the authors’ knowledge, the first of its kind and results su p p o rt th e beneficial use of patient self-monitoring in oncol ogy. Nurses surveyed indicated that they are already incorporating aspects of self m onitoring into th eir care routines; how ever, little is know n as to how they do so and how such approaches can be b etter organized w ith in th e h ealthcare team. Facilitating patients’ self-monitoring and prom oting com m unication w ith in the healthcare team are invaluable contribu tions to patient-centered care. F urther investigation is needed into the benefits of patient self-monitoring, including the positive in te rp e rso n a l im p act on th e nurse-patient relationship and improved sym ptom m anag em en t w h ile fin d in g w ays to m inim ize th e sh o rtco m in g s. Nurses are well-suited to take the lead.
References Baos, V., Ester, F., Castellanos, A., Nocea, G., Caloto, M.T., & Gerth, W.C. (2005). Use of a structured migraine diary improves patient and physician com m unication about migraine disability and treatment outcom es. In te r n a tio n a l J o u r n a l o f Clinical Practice, 59, 281-286. Brant, J.M., & Wickham, R. (Eds.). (2013). Statem ent on the scope a n d standards o f oncology nursing practice, generalist a nd advanced practice. Oncology Nurs ing Society: Pittsburgh, PA. Commission on Cancer. (2012). Cancer pro gram standards 2012, Ensuring patientcentered care. Retrieved from h ttp :// www.facs.org/cancer/coc/programstandards2012.html de Wit, R., van Dam, F., Hanneman, M., Zandbelt, L., van Buuren, A., van der Heijden, K„ . . . Abu-Saad, H.H. (1999). Evaluation of the use of a pain diary in chronic cancer pain patients at home. Pain, 79, 89-99. Fayers, P. (1995). MRC quality of life studies using a daily diary card—Practical les sons learned from cancer trials. Q uality o f Life Research, 4, 343-352. Finnell, D., & Ditz, K.A. (2007). Health diaries for self-monitoring and self-reg ulation: Applications to individuals with serious mental illness. Issues in M ental Health Nursing, 28, 1293-1307. Hermansen-Kobulnicky, C.J. (2009). Symp tom monitoring behaviors of rural cancer patients and survivors. Supportive Care in Cancer, 17, 617-626. Hermansen-Kobulnicky, C.J., & Purtzer,
Clinical Journal o f Oncology Nursing • Volume 18, Number 4 • Supportive Care
M.A. (2013). How I kept track of it of course was my business: Cancer patient self-m onitoring as self-stylized work. Palliative a n d Supportive Care, 6, 1-7. Hermansen-Kobulnicky, C.J., Wiederholt, J.B., & Chewning, B. (2004). Adverse ef fect monitoring: Opportunity for patient care and pharmacy practice. Journal o f the A m erican P harm acy Association, 44, 75-88. Hoekstra, J., de Vos, R., van Duijn, N.P., Schade, E., & Bindels, P.J.E. (2006). Using the symptom monitor in a randomized controlled trial: The effect on symptom prevalence and severityJournal o f Pain a n d Symptom M anagement, 31, 22-30. Marceau, L.D., Link, C., Jamison, R.N., & Carolan, S. (2007). Electronic diaries as a tool to improve pain management: Is there any evidence? Pain M edicine, S(Suppl. 3), S101-S109. Maunsell, E., Allard, P., Dorval, M., & Labbe, J. (2000). A brief pain diary for ambula tory p atien ts w ith advanced cancer: Acceptability and validity. Cancer, 88, 2387-2397. Miller, S.M. (1995). Monitoring versus blunt ing styles of coping w ith cancer influ ence the information patients want and need about their disease: Implications for cancer screening and management. Cancer, 76, 167-177. Myers, T.R. (2002). Im proving p atien t outcom es w ith tools for asthm a self monitoring. Disease M anagem ent and Health Outcomes, 10, 631-642. Purtzer, M.A., & Hermansen-Kobulnicky, C.J. (2013). Being a part of treatment: The meaning of self-monitoring for rural can cer patients. Cancer Nursing, 36, 93-103. Rossi, M.C.E., Nicolucci, A., Pellegrini, F., Bruttomesso, D., Di Bartolo, P., Marelli, G., . . . Vespasiani, G. (2009). Interactive diary for diabetes: A useful and easy-touse new telemedicine system to support th e decision-m aking p ro cess in ty p e 1 diabetes. D iabetes Technology a n d Therapeutics, 11, 19-24. Schumacher, K.L., Koresawa, S., West, C., Dodd, M., Paul, S.M., Tripathy, D., . . . Miaskowski, C. (2002). The usefulness of a daily pain m anagem ent diary for outpatients with cancer-related pain. On cology Nursing Forum, 29, 1304-1313. doi:10.1188/02.ONF.1304-1313 Tucci, R.A., & Bartels, K.L. (1998). Patient use of th e sym ptom re p o rtin g tool. Clinical Jo u rn a l o f Oncology Nursing, 2, 97-99. Wilde, M.H., & Garvin, S.A. (2007). Concept analysis of self-monitoring. Jo u rn a l o f Advanced Nursing, 57, 339-350. 391
Copyright of Clinical Journal of Oncology Nursing is the property of Oncology Nursing Society and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
Valerie Burger, RN, MA, MS, OCN®— Associate Editor
Tracking and Journaling the Cancer Journey Carol J. Hermansen-Kobulnicky, PhD, RPh, and Mary Anne Purtzer, PhD, RN
Clinicians sometimes suggest to patients that they keep track of illness-related is sues. Self-monitoring is a helpful term to describe these at-home activities that yield essential information for self-management. The purpose of this article is to create greater awareness of the opportunities (and potential shortcomings) of patient self monitoring for oncology nursing practice. Carol J. Hermansen-Kobulnicky, PhD, RPh, is an associate professor in the School o f Pharmacy and an adjunct faculty member in the Fay W. W hitney School o f Nursing, and Mary Anne Purtzer, PhD, RN, is an associate professor in the Fay W. W hitney School o f Nursing, both at the University o f Wyoming in Laramie. The authors take full responsibility for the content o f the article. The article was supported, in part, by a faculty Grant-in-Aid Award from the University o f Wyoming. No financial relationships relative to the content o f this article have been disclosed by the editorial staff. Hermansen-Kobulnicky can be reached at cjhkobul@ uwyo.edu, w ith copy to editor at [email protected]. Key words: communication; self-m onitoring; symptom management; survivorship; patient/public education Digital Object Identifier: 10.1188/14.CJON.388-391
any clinicians suggest that their patients keep track of som e thing related to their illness. This article presents ideas pertaining to patients’ journaling or tracking aspects of th eir cancer experience. Drawing front a definition by Wilde and Garvin (2007), self-monitoring is the intentional measuring, recording, or observing of symptoms, sensations, daily activities, and/or thoughts and emotions. Greater awareness helps provide information to the patient and the health professional, improving the patient’s ability to selfmanage (Wilde & Garvin, 2007). About one-third of patients with cancer do some form of self-monitoring without outside intervention (Hermansen-Kobulnicky, 2009; Hermansen-Kobulnicky, Wiederholt, & Chewning, 2004), which nurses (and other health professionals) should consider in the process of care. The goal of the current article is to create a greater aw areness of patients w ith cancer who self-monitor, along with the potential benefits (and shortcomings) of self-monitoring, and to help nurses to consider the potential opportunities for self-monitoring in their practice sites.
M
388
Patient self-monitoring is discussed in the context of various illnesses in cluding asthma (Myers, 2002), migraine headaches (Baos et al., 2005), mental illness (Finnell & Ditz, 2007), and dia betes (Rossi et ah, 2009). For example, patients who suffer from migraine head aches may track their migraines, writing down variables, such as time of day and diet, to better determine what triggers the headaches. Regarding patients with cancer, one opportunity for patient self monitoring is in the area of pain manage ment (de Wit et ah, 1999; Marceau, hink, Jamison, & Carolan, 2007; Schumacher et ah, 2002); however, researchers are beginning to show the importance and po tential for patient self-monitoring through out the cancer continuum (HermansenKobulnicky, 2009; Hermansen-Kobulnicky et ah, 2004; Hermansen-Kobulnicky & Purtzer, 2013; Hoekstra, de Vos, van Duijn, Schade, & Bindels, 2006; Maunsell, Al lard, Dorval, & habbe, 2000; Purtzer & Hermansen-Kobulnicky, 2013). Self-monitoring is known to benefit patients; however, less is known about the direct benefits to practitioners. Patient benefits include a greater sense of control August 2014
through better use of information and patients’ improved ability to resume nor mal activities, as well as empowered abil ity to self-advocate through the complex healthcare system (Purtzer & HermansenKobulnicky, 2013). In addition, self monitoring has been shown to improve symptom management (Hoekstra et ah, 2006; Schumacher et ah, 2002). Anec dotal reports and studies also highlight the usefulness of patient self-monitoring for improving communication between patients and providers (Fayers, 1995; H erm ansen-K obulnicky et ah, 2004; Maunsell et ah, 2000; Schumacher et ah, 2002; Tucci & Bartels, 1998). Although the literature supports the use of self-monitoring, what oncology profes sionals think or the extent to which they apply self-monitoring principles when working with their patients is not known. The current pilot study was intended to gather nurse perspectives on patients with cancer who self-monitor and the potential for self-monitoring to impact patient care.
Methods A cross-sectional, descriptive pilot study of oncology nurses’ beliefs and behaviors regarding patients with cancer who self monitor was conducted using an anony mous, self-administered survey. The study received institutional review board approv al, and researchers gained access to oncol ogy nurses via contacts made through two regional Oncology Nursing Society (ONS) affiliates. Data were collected from the sampling frame during an eight-week period. Hard-copy survey booklets were distributed to nurses attending a profes sional dinner program, with some nurses taking copies back to their practice sites. In total, 43 copies of the hard-copy survey were distributed; however, how many in dividual survey copies reached a potential
Volume 18, Number 4
Clinical Journal of Oncology Nursing
respondent is not certain. The same sur vey was reproduced electronically using WorldAPP KeySurvey software, and the URL for the online survey was distributed w ithin an email to members of the two organizations. A monetary incentive was provided in the form of tw o prize draw ings, each for a $130 money order to be spent on ONS and the local ONS affiliate membership for the coming year. The survey instrum ent was pretested among five health professionals, testing for readability, content validity, tim e for completion, and formatting. Based on pre testing, it was revised, finalized, and formu lated into an online survey and a hard-copy booklet. The hard-copy booklet, a selfaddressed stamped envelope for returning the completed survey, and a postcard were included in the packet. The postcard could be mailed separately by the respondent for the drawing entry. The online survey prom pted respondents to enter into a sepa rate survey to collect contact information for the drawing, ensuring anonymity. The survey content included questions related to respondent beliefs about patient self-monitoring in general, beliefs about self-monitoring in their ow n patient-care practices, and self-reported behaviors re garding patient self-monitoring and patientnurse interactions. A four-point rating scale was used to capture how true each belief or behavior-based statem ent was for respondents. Response choices were “not true,” “somewhat or sometimes true,” “very or often true,” “always true,” and “NA” for not applicable. In addition, knowl edge of patient self-monitoring practices (what is self-monitored and w hat tools are used) and nurse preferences for these were sought using simple checklists. Respon dents w ere asked to “check all that apply.” Respondent characteristics also w ere gathered to describe the sample. Variables included professional degree, oncology certification status, oncology role, practice setting, and years of oncology practice. Respondents also were asked if they work directly w ith patients, w hich resulted in one respondent being rerouted to the end of the online survey to avoid asking ques tions not relevant to his or her role. Lastly, respondents w ere asked if they personally self-monitored things related to their health and well-being. Response categories were “No, I typically don’t,” “Yes, I occasionally do, but it depends on my health status,” and “Yes, I do regularly.” Nurses also were invit C lin ic a l J o u rn a l o f O n c o lo g y N u rs in g
TABLE 1. Respondent Beliefs About Patient Self-Monitoring (N = 23) Variable
X
SD
Patients w ho self-m onitor cope better w ith their cancer.
2.74
0.62
Patient self-monitoring behaviors can improve a patient's quality of life.
2.87
0.63
Self-m onitoring can decrease patient compliance.
1.39
0.5
Patient self-m onitoring is im portant at the beginning o f treatm ent.
3
0.74
A key tim e fo r patients to self-m onitor is at change o f treatm ent.
2.7
1
Patients w ho have completed treatm ent could benefit from self-m onitoring.
2.95
0.58
Patients lack the skills to self-m onitor in clinically useful ways.
1.48
0.59
Helps me problem solve to decrease symptom burden
3.18
0.59
Helps me obtain accurate inform ation
3
0.53
Helps me obtain inform ation efficiently
3.05
0.49
Helps me gain adequate inform ation
2.95
0.65
Helps me understand a patient's perspective
3.41
0.59
Provides inform ation too subjective for me to use
1.57
0.75
Results in excessive follow -up requests by the patient
1.68
0.65
Makes point-of-care w ith a patient too tim e consuming
1.64
0.58
Helps me develop partnerships w ith patients
3.33
0.48
Helps me develop rapport w ith a patient
3.41
0.5
Results in unneeded detail about the patient's experience
1.45
0.6
R e spo nde nt B eliefs
P a tie n t S e lf-M o n ito rin g
Note. Mean scores are based on response choices o f 1 (not true), 2 (somewhat or always true), 3 (very or often true), and 4 (always true).
ed to comment on what they keep track of, how they keep track, and how they use the information. Data analysis was completed using Microsoft Excel® and consisted of descriptive statistics to report frequencies, means, and standard deviations, as well as content analysis of w ritten comments.
Results Twenty-three responses w ere obtained (11 via online survey, 12 via mailed hard copy survey). No response rate can be calculated because many nurses may have received both the hard-copy survey and the URL via email, and, therefore, the total num ber of nurses receiving the survey or URL is unknow n. All respondents w ere nurses. Ten w ere oncology certified and 14 had a bachelor’s degree. Respondents’ years of oncology practice ranged from
V o lu m e 18, N u m b e r 4
S u p p o rtiv e C are
2-33 years. Because one respondent in dicated not having current direct patient contact and a different respondent system atically skipped tw o face-to-face pages of the hard copy survey, few er than 23 re sponses are available for some questions. Averaging responses, nurses indicated that they believe 43% of their patients self m onitor (SD = 24%, range = 10%-100%). Beliefs about patient self-monitoring are reported in Table 1, highlighting perceived benefits and shortcomings. The items with the highest scoring means w ere those that related to understanding the patient per spective, developing rapport, and partner ing w ith the patient. A benefit to nurses is that patient self-monitoring can improve the quality of inform ation available. Re sults also showed that all nurses believe that self-monitoring improves the quality of inform ation available and offers at least 38 9
TABLE 2. Nurse Report of Self-M onitoring Tools Used by Patients and Nurse Preferences fo r These Tools (Frequencies) (N = 23) Tool
How Patients
How Nurses Prefer Patients
Self-M onitor
to Self-Monitor
Resources given by the cancer center
18
19
Journal or notebook
18
17
Calendar or datebook
16
19
Three-ring binder
12
13
Post-it® notes, scraps of paper
9
2
Smartphone and tab let apps, or equivalent
7
14
Computer software (e.g., Word®, Excel®)
6
10
Internet portal
4
6
Other
3
-
N o te. Participants could choose more than one tool.
some benefit to patients’ quality of life and symptom management. Nurses reported that self-monitoring sometimes results in excessive follow-up requests by patients, time-consuming point-of-care, subjective information, and unneeded details about the patient’s experience. Results showed a notable amount of variation on some items related to the tim ing of patient self-monitoring and the use of technology. Some nurses believed the time of treatment change is always a good time for self-monitoring, whereas others did not believe a good time ever existed. Respondents disagreed about w hether self-monitoring can be important at the beginning of treatment, as well. Also, only two respondents believed that it was more than just sometimes true that patients who have completed treatment (i.e., sur vivors) could benefit from self-monitoring. According to survey results, nurses want their patients to track the effects of cancer on their well-being, limits to what they can do, and treatment compliance. Fewer nurses appear to see the value of patients tracking laboratory values or test results. Two nurses reported that patients keep track of what medications they take and when they take them. Respondents also re ported how patients self-monitor and their preferences for how patients should self monitor (see Table 2). Nurse respondents want more technology used by patients and for patients to use the resources given to patients by the cancer center or clinic. 390
Nurses were asked about their own behaviors, motivation, and confidence to w ork w ith p atien ts around self monitoring. The nurses appeared moti vated, yet some reported lower levels of confidence. All nurses indicated that they instruct patients on how to selt-monitor and that patients do share their observa tions with nurses. The methods by which nurses discuss patient recordings or obser vations vary suggesting likely differences in the roles nurses assume in the process. Lastly, nurses reported their own self m onitoring behaviors regarding their health and well-being. All but two reported using some form of self-monitoring, with 8 of 23 indicating that they self-monitor their health on a regular basis. Nurses kept track of their diet, weight, menstrual cycles, self-breast examinations, medica tions taken, exercise, blood glucose, blood pressure, and laboratory results. They reported self-monitoring using a calendar, smartphone applications (e.g., MyFitnessPal), a tablet computer, a written journal, as well as a paper and pencil log. Nurses used the information gained from self monitoring to improve their health, talk with their physician, motivate themselves, and meet their health goals.
Discussion Study findings show that all nurses surveyed believe patient self-monitoring offered some benefit, and all but two August 2014
nurses reported self-monitoring them selves. Although some shortcomings were noted, they were overshadowed by nurses indicating preferences for the types and content of self-monitoring among patients, which often extended beyond what they had observed in practice. Finding a way to minimize shortcomings and maximize benefits seems warranted. No consensus existed in this pilot sur vey about questions pertaining to the timing; however, findings revealed op portunities to begin the conversation. When a patient is experiencing something new (e.g., when treatment is beginning or changing), they may benefit from self monitoring to gain more accurate and insightful information about their symp toms for proper self-management (Wilde & Garvin, 2007) or to share with their healthcare team (Hermansen-Kobulnicky et al., 2004). Likewise, when survivors experience an unusual symptom, self monitoring and documenting what hap pened (and when) has the potential to pro vide valuable information for follow-up. Nurses should consider self-monitoring opportunities for survivors in light of the American College of Surgeons Commis sion on Cancer’s (2012) standards that include survivorship care plans. In addition, what is important to pa tients may not match w hat is im por tant to nurses and other m em bers of the healthcare team. One example of this discrepancy from the pilot survey was in the tracking of laboratory values or test results. Fewer nurses indicated that they preferred tracking tests and results compared to what patients ap pear to be doing. Research suggests that when patients track laboratory and test re sults, they may experience hope through observing their progress (HermansenKobulnicky & Purtzer, 2013). Similarly, even some of the nurses’ written com ments about their personal self-monitor ing included it being done as motivation and to track progress toward personal health goals. Differences in patient be haviors and nurse preferences for those behaviors suggest delving deeper through the use of assessment questions (Purtzer & Hermansen-Kobulnicky, 2013). Doing so would be consistent with respondents’ beliefs that self-monitoring helps them understand the patient perspective. With patient self-monitoring being a way to fa cilitate communication between patients
Volume 18, Number 4
Clinical Journal o f Oncology Nursing
and h ealth professionals (H erm ansenKobulnicky et al., 2004; Marceau et al., 2007; Schum acher et al., 2002), working w ith patients in that respect offers a way to m eet the com m unication standard of the Statement on the Scope and Standards of Oncology Nursing Practice (Brant & Wickham, 2013). The standard speaks to assessing patient preferences and adapt ing one’s com munication m ethod to meet patient needs (Brant & Wickham, 2013). Nurses surveyed indicated that they all in struct patients about how to self-monitor, at least to some degree; however, w heth er patient preferences are intentionally sought is not clear. The significance of including patient preferences for self-mon itoring is supported by a recent study of patient perspectives and their use of selfstylized self-monitoring tools and systems (Hermansen-Kobulnicky & Purtzer, 2013). A goal for the future is to take w hat was learned from this pilot study and pursue a nationwide study of nurses, oncologists, social workers, and clinical pharmacists to learn how to best help healthcare teams strategically facilitate patient self-moni toring in their practice sites. Facilitating self-monitoring in patients w ith cancer in ways that are acceptable and comfortable to the patient, thereby fostering a more successful clinician-patient relationship, is consistent w ith patient-centered care. L im itations
The survey was a pilot study in a small convenience sample of nurses identified through two regional ONS organizations, and findings are not intended to be generalizable to all oncology nurse populations in the United States. Although the respon dents’ locations were not known, multiple cancer centers and clinics w ere rep re sented based on personal feedback. Data collected revealed only w hether nurses w ere observing patient self-monitoring in practice, not the frequency w ith w hich they observe it or the types of patients w ho self-monitor. Not all patients are in clined to self-monitor and, in fact, some may even ignore their cancer experience as a successful coping mechanism (Miller, 1995). Because of this, it is not advocated that all patients self-monitor.
Conclusions M ounting evidence shows the benefits for self-m onitoring. T he c u rre n t pilot
study of oncology nurse perspectives is, to the authors’ knowledge, the first of its kind and results su p p o rt th e beneficial use of patient self-monitoring in oncol ogy. Nurses surveyed indicated that they are already incorporating aspects of self m onitoring into th eir care routines; how ever, little is know n as to how they do so and how such approaches can be b etter organized w ith in th e h ealthcare team. Facilitating patients’ self-monitoring and prom oting com m unication w ith in the healthcare team are invaluable contribu tions to patient-centered care. F urther investigation is needed into the benefits of patient self-monitoring, including the positive in te rp e rso n a l im p act on th e nurse-patient relationship and improved sym ptom m anag em en t w h ile fin d in g w ays to m inim ize th e sh o rtco m in g s. Nurses are well-suited to take the lead.
References Baos, V., Ester, F., Castellanos, A., Nocea, G., Caloto, M.T., & Gerth, W.C. (2005). Use of a structured migraine diary improves patient and physician com m unication about migraine disability and treatment outcom es. In te r n a tio n a l J o u r n a l o f Clinical Practice, 59, 281-286. Brant, J.M., & Wickham, R. (Eds.). (2013). Statem ent on the scope a n d standards o f oncology nursing practice, generalist a nd advanced practice. Oncology Nurs ing Society: Pittsburgh, PA. Commission on Cancer. (2012). Cancer pro gram standards 2012, Ensuring patientcentered care. Retrieved from h ttp :// www.facs.org/cancer/coc/programstandards2012.html de Wit, R., van Dam, F., Hanneman, M., Zandbelt, L., van Buuren, A., van der Heijden, K„ . . . Abu-Saad, H.H. (1999). Evaluation of the use of a pain diary in chronic cancer pain patients at home. Pain, 79, 89-99. Fayers, P. (1995). MRC quality of life studies using a daily diary card—Practical les sons learned from cancer trials. Q uality o f Life Research, 4, 343-352. Finnell, D., & Ditz, K.A. (2007). Health diaries for self-monitoring and self-reg ulation: Applications to individuals with serious mental illness. Issues in M ental Health Nursing, 28, 1293-1307. Hermansen-Kobulnicky, C.J. (2009). Symp tom monitoring behaviors of rural cancer patients and survivors. Supportive Care in Cancer, 17, 617-626. Hermansen-Kobulnicky, C.J., & Purtzer,
Clinical Journal o f Oncology Nursing • Volume 18, Number 4 • Supportive Care
M.A. (2013). How I kept track of it of course was my business: Cancer patient self-m onitoring as self-stylized work. Palliative a n d Supportive Care, 6, 1-7. Hermansen-Kobulnicky, C.J., Wiederholt, J.B., & Chewning, B. (2004). Adverse ef fect monitoring: Opportunity for patient care and pharmacy practice. Journal o f the A m erican P harm acy Association, 44, 75-88. Hoekstra, J., de Vos, R., van Duijn, N.P., Schade, E., & Bindels, P.J.E. (2006). Using the symptom monitor in a randomized controlled trial: The effect on symptom prevalence and severityJournal o f Pain a n d Symptom M anagement, 31, 22-30. Marceau, L.D., Link, C., Jamison, R.N., & Carolan, S. (2007). Electronic diaries as a tool to improve pain management: Is there any evidence? Pain M edicine, S(Suppl. 3), S101-S109. Maunsell, E., Allard, P., Dorval, M., & Labbe, J. (2000). A brief pain diary for ambula tory p atien ts w ith advanced cancer: Acceptability and validity. Cancer, 88, 2387-2397. Miller, S.M. (1995). Monitoring versus blunt ing styles of coping w ith cancer influ ence the information patients want and need about their disease: Implications for cancer screening and management. Cancer, 76, 167-177. Myers, T.R. (2002). Im proving p atien t outcom es w ith tools for asthm a self monitoring. Disease M anagem ent and Health Outcomes, 10, 631-642. Purtzer, M.A., & Hermansen-Kobulnicky, C.J. (2013). Being a part of treatment: The meaning of self-monitoring for rural can cer patients. Cancer Nursing, 36, 93-103. Rossi, M.C.E., Nicolucci, A., Pellegrini, F., Bruttomesso, D., Di Bartolo, P., Marelli, G., . . . Vespasiani, G. (2009). Interactive diary for diabetes: A useful and easy-touse new telemedicine system to support th e decision-m aking p ro cess in ty p e 1 diabetes. D iabetes Technology a n d Therapeutics, 11, 19-24. Schumacher, K.L., Koresawa, S., West, C., Dodd, M., Paul, S.M., Tripathy, D., . . . Miaskowski, C. (2002). The usefulness of a daily pain m anagem ent diary for outpatients with cancer-related pain. On cology Nursing Forum, 29, 1304-1313. doi:10.1188/02.ONF.1304-1313 Tucci, R.A., & Bartels, K.L. (1998). Patient use of th e sym ptom re p o rtin g tool. Clinical Jo u rn a l o f Oncology Nursing, 2, 97-99. Wilde, M.H., & Garvin, S.A. (2007). Concept analysis of self-monitoring. Jo u rn a l o f Advanced Nursing, 57, 339-350. 391
Copyright of Clinical Journal of Oncology Nursing is the property of Oncology Nursing Society and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
