Inpatients’ Perceptions of Cancer-Related Distress Assessment
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Inpatients’ Perceptions of Cancer-Related Distress Assessment
Jay R. Swanson RN, BSN, OCN
Purpose: To examine patients’ perceptions of cancer-related distress, patient expectations that may result from this assessment, and the extent to which those expectations were addressed during hospitalization.
Method: A prospective, exploratory, descriptive study employed a brief survey to ascertain patient perceptions of the inhospital cancer-related distress assessment, which was developed and administered to a convenience sample of 100 oncology inpatients at a Midwestern regional medical center. Results: Of the 100 surveys distributed, 40 (40%) surveys were completed and returned. The overall distress assessment evoked good feelings or feelings of being comforted and cared for. Respondents believed their expectations were either met or exceeded in the resolution of their distress.
Conclusion: Asking inpatients to report levels of distress, particularly if asked several times, set an expectation that some action on the part of hospital staff would be taken to address reported levels of distress. Appropriate and adequate clinical and psychological support services are necessary to address cancerrelated distress concerns. Oncology nurses are in a pivotal position to provide referral and support for patients experiencing cancer-related distress.
Current literature suggest that patients with cancer experience distress.1 Distress can result from physical symptoms of disease,2 treatment effects that decrease quality of life,3 or psychological suffering.4 Recent reports suggest that cancer patients were more satisfied when asked about their distress experience in the outpatient setting5,6; however, simply reporting distress did not necessarily result in reduced distress scores in those studies. In another study, the addition of cancer support services, including the addition of an oncology nurse navigator (ONN), was shown to reduce cancer-related distress in an inpatient population.7
Data are scarce regarding how patients perceive questions concerning cancer-related distress while hospitalized. Further, little is known about the potential impact of distress questionnaires in the inpatient setting, the expectations of patients regarding cancer-related distress, or the extent to which patients believe their expectations were addressed during hospitalization. Previous re - search has demonstrated that nurses may misestimate patients’ emotional distress levels,8 leading to addition or omission of interventions that may improve patient outcomes.
The purpose of this study was to examine patients’ perceptions of cancer-related distress, patient expectations that may result from this assessment, and the extent to which patient expectations were addressed during hospitalization. A prospective, exploratory, descriptive design employed a brief survey to ascertain patient perceptions of the inhospital cancer-related distress assessment, which was developed and administered to oncology inpatients by the principal investigator. The survey (see, e-Appendix, www.AONNonline.org/XXXXXXX) met face validity standards and was reviewed by 4 navigators from different geographic areas with clinical expertise in the administration of distress measures. Because this information was novel in the realm of distress intervention and could potentially contribute to the necessity of the assessment of cancer patient distress, no other appropriate patient survey existed at the time of the study. Inclusion criteria included all male and female patients aged 19 years and older who were admitted to the hospital with a cancer-related problem and for whom documentation was available regarding the cancer-related distress assessment.Patients who were to receive hospice care were considered ineligible for the study. Patients meeting inclusion criteria were randomized to receive the distress perception survey on the day of discharge by flip of a coin. This study was approved by the institutional nursing research council and the institutional review board.
A convenience sample of 100 oncology inpatients was approached by the principle investigator, an ONN, for recruitment into the study. For 65 inpatients, written informed consent was ob - tained in person, and a copy of the consent form was provided to each study participant. Not all patients were available to be consented before dismissal. For those 35 patients, the consent form, the distress perception survey, and a postage-paid return envelope were sent to their address. In total, 82 participants were recruited. If a potential participant failed to return a signed consent form, he or she was considered ineligible.
All patients admitted to the hospital for any concern related to their cancer diagnosis have a standard adult oncology care plan. As part of this plan, patients are asked to rate their cancer-related distress at least once during their hospitalization using an institutional-specific tool based on the National Comprehensive Cancer Network (NCCN) Distress Guidelines (see e-Appendix 2, www.AONNonline.org/XXXXXXX).1 The assess - ment consists of asking the patient to rate the amount of stress he or she is currently experiencing, using a 0 to 10 scale, with 10 being the greatest amount of distress you have ever had and 0 being no distress at all (see e-Appendix 3, www.AONNonline.org/XXXXXXX). At current, no data suggest what comprises patient expectations for resolving their distress, nor if expectations for resolution were met.
The principal investigator distributed surveys to study participants with an attached stamped envelope. Patients were asked to complete and return the survey within 2 weeks of hospital discharge. Each survey contained a code identifier that corresponded to a list of correlated, securely stored medical record numbers. Surveys did not contain any direct patient-identifying information. Upon return of surveys, and consent if applicable, the investigator identified the corresponding medical record number and retrieved from the patient’s medical record demographic data including age, sex, home city, distress scores, race, ethnicity, and whether the patient was seen by the ONN or palliative care team during hospitalization.
Surveys were distributed to study participants randomized over a 7-month period. One hundred surveys were distributed. Data were analyzed using SPSS data analysis software and significance was set at a two-tailed P = .01 level. Of the consenting study participants (n = 82) and those who returned completed surveys (n = 40), demographic, medical, and oncology care data were tabulated (Table).
Among all study participants, most patients (n = 29) were asked their distress score only once during their hospitalization; the remainder were asked multiple times, with a maximum amount of 16 assessments (n = 1). Distress scores were analyzed for change using the first reported score and the final reported score during each patient’s hospitalization. Most patients (n = 57; 69%) had no change in their distress sores over the course of hospitalization. However, for patients reporting a change in distress, 10 (12%) respondents had an increase in distress, 7 (9%) had a decrease in distress, and 8 (10%) patients did not indicate a score.
Study participants who returned a completed survey were more likely to have been screened for distress more than once during their hospitalization (n = 22; 55%) compared with those screened only once (n = 15; 38%), with some respondents (n = 3; 7%) submitting no distress scores. Those reporting distress scores were more likely to report no change in distress from admission to discharge (n = 30; 76%) with fairly equal percentages of patients reporting an increase (n = 6; 14%) or decrease (n = 4; 10%). Regardless of the distress score reported by those completing the survey, the overall distress assessment evoked good feelings or feelings of being comforted and cared for (n = 29; 74.4%). However, not all patients felt the same about the distress assessment; some respondents also felt embarrassed (n= 1; 2.6%), uncomfortable (n = 3; 7.7%), or anxious (n = 5; 12.8%). Only one participant in 40 reported not being honest about the true level of their distress, with the remainder (n = 39) indicating they could be honest in reporting distress. Most patients (n = 31; 76.9%) felt that the distress assessment wouldresult in some action being taken to reduce or eliminate their reported distress. Based on this response, respondents (n= 38; 94.9%) felt their expectations were either met or exceeded in the resolution of their distress. In addition, survey respondents reported (n = 24; 60%) not being assessed for distress in other healthcare settings.
Of the 82 total patients enrolled into the study, length of stay was positively correlated with the number of times screened for distress (P = .001, r = 0.762). This correlation was also associated negatively with change in distress score (P = .001, r = 0.365) in that reported distress was less likely to change with longer hospital stay. No significant changes in distress scores were noted for those participants who reported feeling good, comforted, or cared for concerning distress assessment.
Though the subjects were recruited prospectively, the study required patients to respond by mail after dismissal from the hospital. Our 40% response rate is consistent and in fact superior to other studies of mailed surveys.9,10 Despite receiving only 40 completed surveys, there were no differences noted between those who consented versus those participants who consented and returned a completed survey (Table 1). Our results show that almost all patients (n = 29) indicated they felt good or comforted and cared for by being asked to report their level of cancer-related distress. However, asking inpatients to report levels of distress, particularly if asked several times, set up an expectation that some action on the part of hospital staff would be taken to address reported distress. Responses of hospital staff to reported distress levels either met or exceeded patient expectations, with nearly all patients (n = 39) feeling they could be honest with the nurse about their true level of distress.
These results are consistent with other studies suggesting that addressing patient concerns by the healthcare team increases patient reports of quality of life.11,12 To date, other studies of cancer patient–reported distress have been conducted solely in outpatient settings13; therefore, this study adds to the body of knowledge regarding the unique aspects of the inpatient experience of distress assessment.
The respondents who reported feeling good and/or comforted and cared for (n = 16; 73%) had an assigned ONN who provided care consultations and/or additional support from other members of the multidisciplinary team. The ONN provided information, resources, and holistic support for side-effect management to patients during their hospitalization. In addition, the ONN used the distress assessment to help focus care to the patients’ most immediate needs. Other studies have found that patients feel more cared for and satisfied when they have information they can understand, have a personalized link into the system, and when a focus on quality of life is established. 14-16 Increasing patient satisfaction with the information given is associated with better outcomes and decreased reported distress levels.13
Our survey responses suggest that making inquiries regarding distress levels during the period of hospitalization and responding to that distress with appropriate action or referral may help the patient feel more comfortable and cared for and, at the same time, less anxious or uncomfortable. Based on the data gathered, however, it is not possible to conclude that feeling good and/or comforted and cared for results in improved distress scores, given that more than half of all respondents had no change in distress scores from admission to discharge. In addition, although our results suggest that the ONN may have had some part in alleviating patient distress, the survey did not ask the patient to rate what made them feel good and/or comforted and cared for. Therefore, any member of the patient’s healthcare team could have been responsible for addressing a patient’s distress. Some limitations of this study include using only face validity as a means of survey development and not pretesting the survey for validity or reliability. An effort was made to search for other surveys with characteristics corresponding to the same constructs needed for the current study. A literature search revealed no similar surveys that could be used for this project. Therefore, the survey created used the NCCN guidelines with input from other local and national facilities using such distress assessments successfully. The survey also was intended to be completed after the patients left the hospital and thus in a retrospective manner; this may be a limitation, but the researchers believed that the patients may need time to reflect on their hospitalization before deciding how they felt about being asked about their distress. Given the lack of a valid tool and the limited number of participants filling out the surveys further use and testing of the tool in multiple sites with larger sample sizes would be necessary to verify our results. Given the subjective nature of emotions, it may be difficult to grade feelings regarding the experience of being asked to report cancer-related distress. It is also possible that patients may become more aware of distress if they are asked repeatedly to report it. Of interest, all participants who returned the completed survey and who reported that distress level inquiries during hospitalization left them feeling anxious (n = 5; 12%) were men. Although this sample is quite small and therefore not representative, it may suggest the need for gender-specific approaches when it comes to inpatient distress assessment. In addition, certain cancers may require disease site–specific approaches; however, our data do not reflect any difference in distress level associated with cancer site. The same holds true for socioeconomic and access to care issues.
The final survey question asked patients to detail any additional thoughts regarding being asked to report cancer-related distress during their hospitalization. Some responses provide a good understanding of the nature of the distress-assessment process and provided vital information for future distress research. Some comments from survey respondents included that being asked about distress: “gives you a chance to get questions answered and concerns expressed;” “even though the conversation stirred up more emotion for me at the time, the manner (gentle and caring) in which it was carried out was a big factor in how I responded emotionally;” and “for the most part I’ve been asked in the hospital or at the doctor’s office about distress, they [nurses] always answer satisfactorily.” These responses attest to the continued need of healthcare professionals to screen for and address cancer-related distress concerns.
Study participants denoted their appreciation for a cancer-related distress screening during hospitalization, and that this assessment allowed them to express all areas of concern. Furthermore, when such screening tools were used, they resulted in expectations for addressing stated concerns. Appropriate and adequate clinical and psychological support services are necessary to address cancer- related distress concerns. Oncology nurses are in a pivotal position to provide referral and support for patients experiencing cancer-related distress. Support services can be given directly by the ONN or through referral to a palliative care team who may help ease patient distress related to the cancer experience. Distress assessment is appropriate at any stage or site of cancer, as well as in both out- and inpatient settings. Furthermore, this study’s findings reinforce the importance of distress assessment and appropriate caregiver followthrough from a patient perspective.
This study was supported by Graduate Scholarship in Cancer Nursing Practice GSCNP-10-210-01- SCN from the American Cancer Society. This project also received federal funds from the National Cancer Institute, National Institutes of Health, under Contract No. HH-SN26120 - 0800001E. The content of this publication does not necessarily reflect the views or policies of the Department of Health and Human Services, nor does mention of trade names, commercial products, or organizations imply endorsement by the US government.
Holland JC, Bultz BD; for the National Comprehensive Cancer Network. The NCCN guideline for distress management: a case for making distress the sixth vital sign. J Natl Compr Canc Netw. 2007;5:3-7.
Dy SM, Apostol CC. Evidence-based approaches to other symptoms in advanced cancer. Cancer J. 2010;16:507-513.
Bergmark K, Avall-Lundqvist E, Dickman PW, et al. Patientrating of distressful symptoms after treatment for early cervical cancer. Acta Obstet Gynecol Scand. 2002;81:443-450.
Wilson KG, Chochinov HM, McPherson CJ, et al. Suffering with advanced cancer. J Clin Oncol. 2007;25:1691-1697.
Fulcher CD, Gosselin-Acomb TK. Distress assessment: practice change through guideline implementation. Clin J Oncol Nurs. 2007;11:817-821.
Singer S, Götze H, Möbius C, et al. Quality of care and emotional support from the inpatient cancer patient’s perspective. Langenbecks Arch Surg. 2009;394:723-731.
Swanson J, Koch L. The role of the oncology nurse navigator in distress management of adult inpatients with cancer: a retrospective study. Oncol Nurs Forum. 2010;37:69-76.
Mårtensson G, Carlsson M, Lampic C. Do nurses and cancer patients agree on cancer patients’ coping resources, emotional distress and quality of life? Eur J Cancer Care (Engl). 2008;17:350-360.
Kroth PJ, McPherson L, Leverence R, et al. Combining webbased and mail surveys improves response rates: A PBRN study for PRIME Net. Ann Fam Med. 2009;7:245-248.
Kelly BJ, Fraze TK, Hornik RC. Response rates to a mailed survey of representative sample of cancer patients randomly drawn from the Pennsylvania Cancer Registry: a randomized trial of incentive and length effects. BMC Med Res Methodol. 2010;10:65.
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12.Zachariae R, Pedersen CG, Jensen AB, et al. Association of perceived physician communication style with patient satisfaction, distress, cancer-related self-efficacy, and perceived control over the disease. Br J Cancer. 2003;88:658-665.
Griggs,JJ, Sorbero MES, Mallinger JB, et al. Vitality, mental health, and satisfaction with information after breast cancer. Patient Educ Couns. 2007;66:58-66.
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Iconomou G, Viha A, Koutras A, et al. Impact of providing booklets about chemotherapy to newly presenting patients with cancer: a randomized controlled trial. Ann Oncol. 2006; 17:515-520.
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Navigation Implications for Distress Monitoring
By Sharon Gentry, RN, MSN, AOCN, CBCN
Derrick L. Davis Forsyth Regional Cancer Center, Winston-Salem, North Carolina
Nurse navigation and distress monitoring will go hand in hand as the American College of Surgeons’ Commission on Cancer institutes its Cancer Program Standards 2012: Ensuring Patient- Centered Care as part of its accreditation standards beginning January 1, 2012 (www.facs.org/cancer/coc/cps2011.html).
The distress assessment will uncover individual patient concerns. Whether it is the nurse at the bedside, nurse in the outpatient office, or nurse at the chemotherapy chair who completes the distress monitoring tool, the assessment allows the introduction of a nurse navigator to address the patient’s needs. Interaction along the care continuum has the potential to strengthen teamwork between nurses and navigators. As other healthcare team members are consulted based on patient need, the team is enriched and the patient experiences the many layers of cancer support services.
Distress assessment allows nurses and navigators to build a resource bank that can be used consistently to meet each patient’s identified needs. All members of the patient’s care team can use the referral bank to consult on needs such as dietary, respiratory, etc. The goal would not be to leave the nurse navigator out of the team, but to use his or her time for more challenging concerns or problems. This would help relieve any workload burden the nurse may feel when the process is introduced. In time, other nurses may become comfortable addressing patient concerns independently.
At first, the distress tool may identify common patient needs for which the facility lacks resources to meet. This is an opportunity for the nurse navigator to gather data and present to the cancer committee a quality-improvement initiative.
Following up on plans put in place to address needs may present a challenge to the nurse navigator. The nurse may need to try different interventions if the initial care plan did not reduce patient distress. In addition, the navigator needs to communicate throughout the care continuum as the patient weaves in and out of hospital and outpatient clinic. Clear communication will decrease duplication of efforts and make the patient feel like the care is given in a seamless healthcare system. The navigator becomes the hub of the wheel with the healthcare team members being the spokes who help the patient circle through the healthcare system.
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