|
|||||
|
|
||||||
Journal of Clinical Oncology, Vol 23, No 18 (June 20), 2005: pp. 4013-4020 © 2005 American Society of Clinical Oncology. DOI: 10.1200/JCO.2005.12.029
Cancer Patients' and Patient Advocates' Perspectives on a Novel Information Source: A Qualitative Study of The Art of Oncology, When the Tumor Is Not the Target
Section of Patient Education and Department of Psychiatry and Psychology, Mayo Clinic, Rochester, MN INTRODUCTION Cancer patients are increasingly involved in a number of wide-ranging aspects of cancer care (eg, collaborative treatment decision making, advocacy, and development of clinical practice guidelines).1 Despite increased access to information and involvement in care overall, little information is available to cancer patients about the practice of oncology from an oncologist's perspective. Information written by oncologists about end-of-life care, physician-patient communication, cancer survivorship, and the emotions of oncologists may be of interest and potentially beneficial to cancer patients and their families. There is concern among some health care professionals that certain types of information may increase psychological distress, thereby minimizing any benefit of sharing this information.2 Consequently, physicians may be reticent to share information regarding difficult topics such as do-not-resuscitate status and other end-of-life care issues. However, physicians' and cancer patients' perspectives about the potential harm of patient information have been shown to differ, and cancer patients have reported finding that their medical information is helpful and reassuring, even when the news is bad.2,3 Furthermore, individual differences exist in the type and amount of information preferred by different cancer patients, and these preferences may change over the course of illness.4 Because cancer patients and health care professionals have been shown to differ in their beliefs about what would be helpful to cancer patients,5,6 it is necessary to obtain patients' perspectives on the usefulness of new sources of information. A special section of the Journal of Clinical Oncology entitled "The Art of Oncology: When the Tumor Is Not the Target" was initiated in January 2000 to facilitate discussion among professionals regarding improved end-of-life patient care. The articles published in this journal section, which were written by and for oncology health care professionals, were compiled into an anthology, which is also entitled The Art of Oncology: When the Tumor Is Not the Target,7 and sent to all members of the American Society of Clinical Oncology in May 2003. The anthology is divided into the following four sections: (1) end-of-life issues; (2) emotions of the oncologist; (3) hospice and symptom control; and (4) survivorship issues. The articles included in the anthology were developed from the beginning as informational sources that could potentially be of value, not only to professional audiences, but to select members of the lay public as well, including patients facing end-of-life issues and their families. In the current study, we interviewed advanced cancer patients and patient advocates about their personal perspectives on this anthology. We chose a qualitative research approach because these methods are recommended for collecting data sensitive to the unique personal experiences, perceptions, and behaviors of patients.8,9 The value of qualitative data in health-related research is increasingly recognized, and knowledge of health and illness is considered obsolete unless it includes the subjective experience of the individual patient.8 Furthermore, qualitative research is the recommended first step in research designed to assess patient preferences and opinions.8 Consequently, qualitative research methods have often been used in research areas relevant to this study, such as patient perspectives of end-of-life care,10 studies of oncologists' communication,11 factors influencing patient decision making,12 patients' experiences of health care professionals' behavior,13 discussing adjuvant cancer therapy,14 cancer patients' experience of symptoms,15 interventions designed to improve patient-physician interactions in oncology,16,17 patient preferences for communication of cancer diagnosis,18 and cancer patients' information needs.4 Because individual interviews tend to be more useful for evoking personal experiences and perspectives on sensitive topics,8,19 they were chosen over group interviews, focus groups, or other qualitative data collection methods. In particular, we were interested in addressing the following questions. What is the emotional impact of the anthology on patients with advanced cancer? What is the clinical impact of the anthology on this patient group (eg, impact on communication and clinical decision making)? Do these patients consider the anthology appropriate for sharing with other patients? PATIENTS AND METHODS
Participants Patient advocate participants. The 11 members of a local patient advocacy working group (ie, cancer patients or survivors affiliated with a regional cancer treatment group) were given study information, and six members (one male and five females) completed the study interview. Because no new themes emerged in the final three interviews (theoretical/data saturation) and because we were limited to a convenience sample of 11 patient advocates, no additional advocates were enrolled or interviewed.
Procedure Interviews were conducted by a study investigator (K.S.V.) not involved in the participants' clinical care. The semistructured interview script followed guidelines for minimizing bias and increasing the reliability and validity of interview data22-24 and was pilot tested to ensure that questions and follow-up probes were easily comprehended and delivered in a sensitive manner. During the interview, participants were encouraged to give honest answers and reminded that health care professionals would not have access to identifiable responses. Demographic information was collected, followed by the semistructured interview questions, requiring approximately 30 minutes. The interview consisted primarily of open-ended questions about use of the anthology, emotional and clinical impact of the anthology, recommendations to oncologists and patients regarding use of the anthology, and strengths and weaknesses of the anthology. Participants were asked to rate their distress or negative emotions associated with use of the anthology on a scale of 1 to 10 (1 = no distress and 10 = extreme distress). Interviews were audiotaped and transcribed verbatim. Data were analyzed as soon as possible after transcription. Participant recruitment and interviewing proceeded until we determined we had reached theoretical saturation, the stage at which participant interviews do not seem to be generating new information.21
Data Analysis RESULTS We report results based on 22 patient participants and six patient advocate participants.
Patient Participants
Use of anthology. The majority of participants had read at least some of the anthology (mean amount read, 77% ± 30%). No instructions were given regarding sharing the book, but many patients reported sharing it with a support person or had plans to do so in the future. One participant explained, "It described fatigue in better terms than I was using because [my spouse] was one of those that said well, exercise more and you'll get more energy, and that just doesn't happen. So, I handed him the article, and he read it, and I think he understood a little more." Essay-specific feedback. Although participants often described their responses to the anthology as a whole, many commented on the impact of specific essays. Opinions were mixed on many of the essays, with some participants describing positive experiences and opinions, whereas others described a negative response. However, there were articles and sections with more consistent feedback from participants. For example, several patients commented positively about "But Doctor, What Have I Got to Lose?," a piece addressing the benefits and burdens of chemotherapy for patients with advanced incurable cancer ("it really got me really thinking," "that was something I had no idea about until I read the article," "...they talk about how to convey the message to patients...I think that that's probably the most important thing"). The essay most often described in positive terms by participants was "Sweet Time Unafflicted," an essay about what happens when a medical oncologist becomes aware that he may have cancer ("...it's just excellent. I would say that all physicians should read it," "I really liked it, I read it a couple of times"). Similarly, participants were fairly consistent in their positive opinion of the essays addressing the emotions of the oncologist. There was no one essay that participants consistently described in negative terms. Several described reading the first article ("Caring for Dying Patients: What is Right?") as most difficult emotionally because it immediately focused attention on incurable cancer and end-of-life issues. Emotional impact of anthology. Few participants (n = 5) reported little or no emotional impact, and of these patients, most were men (80%). Explanations included lack of relevance for patients (ie, directed at physicians) or lack of impact because of personal acceptance of cancer status. "I don't think it bothered me. I had pretty well accepted the fact thatyes, I've got cancer, and you know, there's no reason for me to ask why me or not me" (male, 60s). Most participants (n = 17) reported emotional impact, and the mean (± standard deviation) distress rating (1 = no distress and 10 = extreme distress) was 4.27 (± 2.71). Some patients described either a positive or negative emotional response overall, and others described a range of emotional experiences. Comments from the few patients reporting only positive emotional responses focused around the anthology as an indicator of physician desire to improve patient care at end of life. More participants described experiencing at least some negative emotions in response to the anthology (59%), with some of these patients describing significant emotional distress. Many used the word "depressing" to describe the emotional impact, especially in response to the first section (ie, End-of-Life Issues). "Well, I looked it over, and I read the first section and I found that extremely depressing. It just tore me apart. I mean it reallyI thought I cannot read any more of this. It was mostlyyou have so much time, and that's about it. Like I said, my God, I can't read any more of thisit's too depressing" (male, 70s). "Didn't know if I'd be able to finish it, but I did. That first sectionthe end-of-life issueshit me real hard. I did a lot of crying...It hits home" (female, 50s). A theme among those experiencing strong negative emotions was that the anthology lacked an emphasis on hope. "I, probably like the majority of people, have hope for healing, even though I'm not in denial, and I know what I've been told by the doctors, but you know I am a Christian, and I believe in miracles and so I kind of have to fill my mind with hope and positive things, and so to be honest, emotionally it was not helpful to me. Some of [the articles] made me cry... it was very difficult. I don't want to be thinking about not winning the battle" (female, 60s). Another theme, among patients reporting emotional distress was that the information and scenarios that were most similar to their own experience had the most emotional impact. Several patients also described that their response varied over time or with anthology content. "I think I really experienced the whole realmbetween scaring me to death to gaining more hopeful feelings about things" (female, 50s). "I got it within a week of knowing that I was having a recurrence, my stress level was very high, and then as the weeks went on, it became much easier for me to read. So, I kind of would pick it up and see how I felt about reading it, and then if I just thought I'm on too shaky of a ground, I would just put it down, and then pretty soon, I was able to pick it up and read it" (female, 50s). The influence of time and content on emotion was also evident in distress ratings (higher scores indicate more distress). "Well, by and large, I was probably at 5, but there was a couple of times it hit me deepermaybe a 7 or 8" (male, 70s). "The whole thing maybe was 1 to 2, but there were certain parts that maybe were 5sthe ones that seemed so similar" (female, 50s). A theme across many interviews was a weighing of the relative value of experiencing the negative emotions (ie, was it worth it?). Some patients felt that the distress they experienced with the anthology was of no merit, whereas others felt that the emotional experience was valuable in some personal way. Clinical impact of anthology. Most participants (67%) described the anthology as having an impact on their clinical care. Major themes included (1) affirming existing positive relationship and positive communication with oncologist/physician; (2) increasing empathy for oncologists; (3) improving communication; (4) increasing consideration/questioning of treatment choices; (5) increasing consideration of end-of-life planning and preparation; and (6) providing new or increasing information that was perceived as clinically relevant. Table 3 presents representative quotes for these themes.
For patients describing no perceived clinical impact (33%), most explained that either they already have a good relationship and good communication with their oncologist and, consequently, did not require information about improving relationship or the anthology was not directed at patients and, as such, did not influence thoughts or behaviors related to clinical care. Providing the anthology to other patients. A few participants (n = 5) recommended against sharing the anthology with patients, primarily because of potential for emotional distress and, secondarily, because it seemed to be written for medical professionals and not patients. "I would think he was trying to tell me in a nice way that I'm coming to the end of my life. I think it would be very disheartening to the patient...I think it would rob them of their hope. I feel that patients like me...need to be constantly encouraged by hope and constantly built up. If you aren'tyou lose your hope, you quit eating, you quit" (female, 60s). "Don't give it to them. It causes more depression than you need, and you sure don't need it" (male, 60s). Most participants recommended sharing the anthology but cautiously and with select patients. Themes within this area included the need for the oncologist to know or evaluate the patient's readiness for the anthology, caution against sharing it with those who are having difficulty accepting their cancer diagnosis, and caution against sharing it with those who are struggling emotionally with their medical condition. Another theme was that written material can never replace discussion with a clinician. Participants also cautioned that sharing materials about end of life may be perceived as a covert message about impending death. "I think that there may be many patients that would have difficulty understanding it. I think with selected patients, it is appropriate. On the other hand, I think there are patients that it should not be shared with...including in the group that should not receive it could be those that are very emotional over their condition...having a great difficulty accepting it" (male, 70s). "To me, you'd have to go patient by patient. I've known a lot of people that have died of cancer and how different ones would have reacted. Well, if they're not sure, I would think they'd have to kind of discuss the patient's feelings about maybe reading stuff, you know, cases of patients that are going to die" (female, 50s). "When they gave me this book, they didn't say it in so many words, but essentially they are saying, you're one of these people who are never going to get over this disease; you're going to die from it, so why don't you read this book and see how it affects you...you don't like to think of yourself in those terms, so I think they'd have to be careful who they gave it to. If someone wasn't thinking of themselves in those terms, it might cause them to get very depressed or worse" (female, 50s). Rationale provided for sharing the anthology with patients focused primarily around improving communication, gaining information, and learning about the emotions of oncologists. Participants were also asked to describe for oncologists the right kind of patient to receive the anthology, and most described patients with advanced cancer who were actively involved in their care, accepting of their cancer status, emotionally stable, and possessing the educational background necessary for comprehension of the material. "Oh, I think a patient that is more open to what the physicians are telling him. In contrast, someone who's very adamant in their denial of their condition, I fear that that would not be very helpful to someone who's in that mental state" (male, 70s). "Someone who says, What do we do now, doc? and Give me the options. Someone who initially asked for information. Somebody who's initiating conversations, asking questions, kind of just a more active patient overall" (female, 50s). Perceived strengths and weaknesses of the anthology. Participants were quite consistent in describing strengths and weaknesses of the anthology. Strengths included the emphasis on patient-oncologist relationship and communication, the variety of perspectives, and several specific content areas (emotions of the oncologist, survivorship section, and hospice). "It was a very kind and thoughtful approach to giving people the kind of news that they never really want to have to hear or want to accept" (male, 70s). "It's interesting just to see how different doctors handle the same thing" (female, 50s). "I think just knowing that the doctors care" (male, 70s). "I didn't think it talked down to you" (female, 50s). Themes identified within participant discussions of the weaknesses of the anthology included the negative emotional consequences of reading the material, a lack of emphasis on hope, no information addressing a patient's point of view, and presentation issues (eg, challenging technical language used and repetition of similar material). "That it was just plain depressing" (female, 50s). "They were using terminology in there I didn't have any comprehension of what they mean" (male, 70s). "It could have some patients' point of views on some of the things in here. I mean they have things about patients and what happened to them, but not from their point of view" (female, 50s).
Patient Advocate Participants "I was glad to see that there is some literature that talks about end-of-life issues and hospice and the patient-physician relationship toward the end of life. I think many times that this isn't addressed to patients" (female, 60s). "I think the thing that it would give physiciansnot all physicians do a nice job of holding on to the humanity of the patient or the humanity of themselves" (female, 60s). "I think it could be a great springboard for discussion with patients and the medical establishment" (female, 60s). More than one of the patient advocates found the anthology to be emotionally distressing, whereas others reported low levels of distress. Several commented that it seemed to lack patient perspective and, thus, seems better suited to medical professionals. Overall, like the patient participants, patient advocates recommended sharing the anthology with select patients and after consideration of patient readiness for potentially distressing material. Many patient advocates thought that active patients who are accepting of their condition and emotionally able to cope with end-of-life topics were most appropriate for receiving the anthology. DISCUSSION The most consistent theme across participants, including those most distressed by the anthology, was an appreciation for physician attention to end-of-life cancer care. Patient and patient advocate opinions were remarkably similar; in effect, all participants took on the role of cancer patient advocates by thoughtfully considering the appropriateness of the anthology for other patients. The primary theme in this area was participant approval for sharing the anthology with select patients and a belief that, for involved patients who are accepting of their cancer status and emotionally ready to read about end-of-life issues, the anthology could positively impact patient-physician communication, patient-physician relationship (particularly through increased understanding of and empathy for oncologists), patient consideration of treatment options, and patient preparations for end-of-life care. Many participants associated the acceptance of advanced cancer with readiness to read about end-of-life issues. Our qualitative data lend some support to this hypothesis, in that participants most distressed by the anthology often reported great difficulty accepting or coping with their cancer diagnosis. Participants specifically cautioned against recommending the anthology to someone "in denial" because this type of patient was thought to be most likely to become seriously distressed, particularly if no rationale or instruction is given for use of the anthology. Many participants explained that cancer patients are the experts in their own learning needs, informational interests, and emotional readiness to read about end-of-life care. Thus, it was recommended that physicians considering sharing the anthology with patients make this a patient-centered and patient-informed decision. We observed a sex difference in participants' immediate response to the anthology. A greater number of men declined to complete the study interview and/or immediately discontinued reading the anthology after experiencing a strong negative emotional response (eg, depressed mood). Most of the women attempted to keep reading the material despite, in some cases, strong negative emotions. It is unclear whether this difference is a result of social desirability (eg, women less comfortable discontinuing study), differing interpretation of the potential utility of experiencing negative emotions (eg, necessary process in coming to terms with end of life), or other factors. This study has limitations that should be considered when interpreting our findings. Primarily, participants were white and married, averaged over 12 years of formal education, and expressed satisfaction with their current medical care. Although thematic saturation was achieved and our sample size was comparable to samples used in previous qualitative interview studies with cancer patients, a larger and more diverse sample (ie, variable ethnic/racial background, education level, health care resources, and satisfaction with health care team) would likely reveal new and divergent themes. Despite our efforts to minimize social desirabilityinfluenced responding, there is potential for social desirability to impact evaluation project findings.27 Although some health care professionals may believe that more information is always better for cancer patients, our qualitative data support previous work indicating that individual differences exist in the type and amount of information preferred by cancer patients and that these preferences may change over the course of illness.4 Reading this anthology was of interest and perceived benefit to many of the patients who participated in this study. This is illustrated by noting that many patients who were interviewed shared (or planned to share) the anthology with others, perceived a clinical impact, liked something about the anthology, and perceived that the main theme/message was at least somewhat important for patients (as detailed in Table 2). However, other participants found the emotional consequences of reading this anthology to be too great. As evidence of this, several participants who received the anthology did not participate in the interview process primarily because they found the reading material to be too emotionally difficult. These data support that this anthology does seem to be a valuable resource for some but certainly not all patients with advanced cancer. If it is made available for such patients, it is recommended that appropriate warnings regarding the content be shared with potential recipients. Because the technical language included in several essays may be a barrier to patient understanding, oncologists should invite patients to return with questions; subsequent editions might benefit from the addition of a glossary or in-text definitions and descriptions. At this time, the anthology is not readily available to patients or their support persons, but several participants explained that, if it was made available, patients would be able to quickly self-evaluate their ability and readiness to read and potentially benefit from the anthology. The Art of Oncology articles have been made available to the public on the People Living With Cancer Web site (http://www.plwc.org). Individuals are able to self-select essays of interest to them and to provide feedback on their opinions and experiences with the collection of essays. On the basis of the comments of our participants, oncologists are encouraged to share the anthology and other informational resources that address end-of-life care with their patients. However, it is important to empower the patient to choose what part, if any, of the anthology or other resources they are ready to read and to invite the patient to discuss their experiences with the anthology, thereby facilitating a patient-centered dialogue regarding collaborative end-of-life care. Authors' Disclosures of Potential Conflicts of Interest The authors indicated no potential conflicts of interest.
REFERENCES 1. Rankin N, Newell S, Sanson-Fisher RW, et al: Consumer participation in the development of psychosocial clinical practice guidelines: Opinions of women with breast cancer. Eur J Cancer Care (Engl) 9:97-104, 2000 2. Norum J: Should cancer patients receive a copy of the medical record when visiting an out-patient clinic? Support Care Cancer 9:55-60, 2001[CrossRef][Medline] 3. Fisher B, Britten N: Patient access to records: Expectations of hospital doctors and experiences of cancer patients. Br J Gen Pract 43:52-56, 1993[Medline]
4. Leydon GM, Boulton M, Moynihan C, et al: Cancer patients' information needs and information seeking behaviour: In depth interview study. BMJ 320:909-913, 2000 5. Girgis A, Sanson-Fisher RW, Schofield MJ: Is there consensus between breast cancer patients and providers on guidelines for breaking bad news? Behav Med 25:69-77, 1999[Medline] 6. Schofield MJ, Sanson-Fisher RW: How to prepare cancer patients for potentially threatening medical procedures: Consensus guidelines. J Cancer Educ 11:153-158, 1996[Medline] 7. Loprinzi CL: The Art of Oncology: When the Tumor Is Not the TargetAn Anthology About End-of-Life Care and Doctor-Patient Communications. J Clin Oncol 21:S1-S128, 2003 (suppl 9)[CrossRef] 8. Sim J: Collecting and analysing qualitative data: Issues raised by the focus group. J Adv Nurs 28:345-352, 1998[CrossRef][Medline] 9. Strang P: Qualitative research methods in palliative medicine and palliative oncology: An introduction. Acta Oncol 39:911-917, 2000[Medline]
10. Singer PA, Martin DK, Kelner M: Quality end-of-life care: Patients' perspectives. JAMA 281:163-168, 1999 11. Dworkind M, Towers A, Murnaghan D, et al: Communication between family physicians and oncologists: Qualitative results of an exploratory study. Cancer Prev Control 3:137-144, 1999[Medline] 12. Schutta KM: Factors that influence a patient's decision to participate in a phase I cancer clinical trial. Oncol Nurs Forum 27:1435-1438, 2000[Medline] 13. Bjorklund M, Fridlund B: Cancer patients' experiences of nurses' behaviour and health promotion activities: A critical incident analysis. Eur J Cancer Care (Engl) 8:204-212, 1999
14. Leighl N, Gattellari M, Butow PN, et al: Discussing adjuvant cancer therapy. J Clin Oncol 19:1768-1778, 2001 15. Magnusson K, Moller A, Ekman T, et al: A qualitative study to explore the experience of fatigue in cancer patients. Eur J Cancer Care (Engl) 8:224-232, 1999 16. McConnell D, Butow PN, Tattersall MHN: Audiotapes and letters to patients: The practice and views of oncologists, surgeons and general practitioners. Br J Cancer 79:1782-1788, 1999[CrossRef][Medline] 17. Velikova G, Brown JM, Smith AB, et al: Computer-based quality of life questionnaires may contribute to doctor-patient interactions in oncology. Br J Cancer 86:51-59, 2002[CrossRef][Medline] 18. Butow PN, Kazemi JN, Beeney LJ, et al: When the diagnosis is cancer: Patient communication experiences and preferences. Cancer 77:2630-2637, 1996[CrossRef][Medline]
19. Giacomini MK, Cook DJ: User's guides to the medical literature: XXIII. Qualitative research in health careAre the results of the study valid? JAMA 284:357-362, 2000 20. Sandelowski M: Sample size in qualitative research. Res Nurs Health 18:179-183, 1995[Medline] 21. Glaser BG, Strauss AL: The Discovery of Grounded Theory. Chicago, IL, Aldine Publishing, 1967 22. Denzin NK, Lincoln YS: Handbook of Qualitative Research (ed 2). Thousand Oaks, CA, Sage Publications, 2000 23. Kirk J, Miller M: Reliability and Validity of Qualitative Research. London, England, Sage Publications, 1986 24. Krueger RA: Focus Group Kit. Thousand Oaks, CA, Sage Publications, 1998 25. Neuendorf KA: The Content Analysis Guidebook (ed 1). Thousand Oaks, CA, Sage Publications, 2001 26. Patton M: Qualitative Evaluation and Research Methods. Newbury Park, CA, Sage, 1990 27. Nancarrow C, Brace I: Saying the "right thing": Coping with social desirability bias in marketing research. Bristol Business School Teaching and Research Review 3:1-12, 2000
|
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
|||||||||||
|
Copyright © 2005 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
|