Journal of Cancer Education

ISSN: 0885-8195 (Print) 1543-0154 (Online) Journal homepage: http://www.tandfonline.com/loi/hjce20

Cancer patients' concerns: Congruence between patients and primary care physicians Richard Goldberg MD , Edward Guadagnoli PhD , Rebecca A. Silliman MD, PhD & Arvin Glicksman MD To cite this article: Richard Goldberg MD , Edward Guadagnoli PhD , Rebecca A. Silliman MD, PhD & Arvin Glicksman MD (1990) Cancer patients' concerns: Congruence between patients and primary care physicians, Journal of Cancer Education, 5:3, 193-199 To link to this article: http://dx.doi.org/10.1080/08858199009528064

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J. Cancer Education. Vol. 5. No. 3, pp. 193-199, 1990 Printed in the U.S.A. Pergamon Press pic

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CANCER PATIENTS' CONCERNS: CONGRUENCE BETWEEN PATIENTS AND PRIMARY CARE PHYSICIANS RICHARD GOLDBERG, MD*; EDWARD GUADAGNOLI, PhD†; REBECCA A. SILLIMAN, MD, PhD‡; ARVIN GLICKSMAN, MD§ Abstract — To investigate whether physicians perceive concerns of cancer patients in the same way as patients, we asked primary care physicians and cancer patients to complete an instrument that allowed each to indicate their views of the relative importance of a variety of treatment and disease-related concerns. The instrument was completed by 195 physicians (56% response) and 119 newly diagnosed breast, lung, and colorectal cancer patients (50% response). Psychometric analysis of responses to the instrument revealed two components: general concerns and physician-treatment concerns. For both the physician and the patient groups, internal consistency (coefficient alpha) of these two components was high (> .83). Within the patient group, scale scores did not differ as a function of performance status, cancer type, extent of disease, or age. For physicians, scale scores were not related to years in practice, board certification, or number of new cancer patients seen per year. A comparison of scale scores between groups indicated that there was good physician-patient congruence on only one of the two concern components. Physicians do not adequately appreciate the extent of concern patients have with regard to treatment and physician interaction issues.

The development of a therapeutic alliance between physicians and cancer patients depends to a large extent on the congruence of their perceptions regarding treatment issues.1 A positive physician-patient relationship has been shown to increase patients' compliance2"4 and may have an important influence on survival.5 The degree of congruence between patients' concerns and physicians' perceptions of these concerns also may influence satisfaction with care. By making assumptions about what patients want to know, physicians may fail to address issues patients consider important.6 Adequate communication is an important basis for satisfaction with care, which, for a cancer patient, is a major component of the patient's

*Psychiatrist-in-Chief, Rhode Island Hospital and Women & Infants Hospital, Providence, RI 02903. †Assistant Professor of Health Care Policy, Harvard Medical School, Boston, MA 02115. ‡Assistant Professor of Medicine & Community Health, Roger Williams General Hospital, Providence, RI 02908. §Professor and Chairman, Department of Radiation Medicine, Roger Williams General Hospital, Providence, RI 02908. Reprint requests to: Richard Goldberg, MD, Rhode Island Hospital and Women and Infants Hospital, 593 Eddy Street, Providence, RI 02903.

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overall quality of life.7 Studies of adolescent8 and adult9 cancer patients have demonstrated that physicians may not appreciate the importance of many significant patient concerns. However, little data is available for adult cancer populations. We therefore studied primary care physicians and newly diagnosed adult cancer patients to compare their perceptions of the importance of various issues related to the patients' cancer experience.

METHODS Subjects A "cancer concerns" questionnaire was mailed to all family practice, general practice, and internal medicine physicians (N = 355) practicing in the state of Rhode Island. We chose primary care physicians as the study sample because of their role in the longitudinal care and continued involvement with their patients even when other specialists are providing some concurrent care. Physicians were identified through the 1985 Rhode Island Medical Society Membership Directory and through the Greater Providence telephone directory. Physician characteristics (sex, years in practice, medical

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specialty, board certification, and number of new cancer patients in the past year) were obtained as part of the questionnaire. Patients were identified from a large multidisciplinary project (initiated July 1984) investigating the effect of patient age on diagnostic and treatment patterns in newly diagnosed cancer patients.10 In that study, medical records abstractors collected treatment and patient status information for a two-year period following each patient's diagnosis. During the follow-up period, patients were asked to participate in a series of four interviews. The initial interview refusal rate for both patients and physicians was approximately 20% for each. Patients participating in the interview phase of the project after September 1985 (N = 237) were eligible to receive the questionnaire described in this report. Following their first interview (approximately 12 weeks post diagnosis), patients were asked to complete the cancer concerns questionnaire and return it to the authors in a stamped, self-addressed envelope.

Instrument development We developed a self-administered questionnaire that allowed physicians and patients to indicate the relative importance of various cancer-related issues. Drawing upon a review of the literature concerning cancer patients' needs, the authors' experience with cancer patients, discussion with colleagues caring for cancer patients, and review of a similar instrument designed for adolescents,8 we identified eight domains of concerns. These included physical function (P), social function (S), effects of cancer and its treatment (EC), communication (C), information (I), emotional support (E), concrete (daily living) services (CS) and health behavior (H). We generated five to six items for each domain. A 43-item instrument resulted following group review of each item's content and face validity. The questionnaire asked respondents to rate the importance of each item along a 5-point Likert scale (1 = not at all important, 2 = not very important, 3 = important, 4 = very important, 5 = extremely important). Patients indicated the importance of each item while

physicians responded to this instruction: How important to your newly diagnosed cancer patients are each of the following questions or concerns? Following the construction and administration of the questionnaire, we employed a psychometric approach to identify the underlying structure of the instrument. This approach involved the application of principal component analysis11 to mathematically determine the existence of homogeneous and independent domains. Towards this goal we also assessed both the internal consistency and interrelationship (correlation) of resulting domains. Initially, the inter-item correlation matrix from the larger-sized physician sample (N = 195) underwent principal component analysis. The resulting solution was then validated within the patient sample (N = 119). We eliminated Item 26, "How my spouse is reacting to my disease," from analysis because of a high number of missing responses present in the patient sampie. A scree plot12 of the physician sample's eigenvalues suggested the presence of two to six major components. Each potential solution underwent varimax rotation and interpretation. The two-component solution, accounting for 45.5% of the variance, yielded the most meaningful solution. Items selected to comprise the resulting two scales met several criteria. An item had to load s .35 on one component and between ± .35 on the remaining component. Items that meet these criteria are called marker items. Seventeen items loaded .35 or greater on both components and were eliminated from further consideration. This left one component (general concerns) comprised of 15 items and another (physician-treatment concerns) comprised of 10 items. We then assessed the comparability of this solution with the two-factor varimax-rotated solution generated from the patient sample. The majority of items loaded consistently (i.e., were marker items) across solutions. For both the physician and patient samples, the item content of each component, along with component loadings, are presented in Table 1. Eleven items from the first component and seven items from the second component possessed a similar load-

Cancer patients' concerns

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Table 1. Varimax-rotated component loadings for the two-component solution Loadings Physician

Part I. General concerns 1. Knowing about the availability of home nursing services. 2. Whether they will be able to go out socially. *5. Learning about what causes cancer. 7. Dealing with the financial cost of care. *8. How they can help the most with their treatment plan. 11. How often they will have to see you. 13. Obtaining information about cancer survival rates. 15. Obtaining transportation to and from physician visits, *21. Learning about new cancer researrch. 23. Knowing about the availability of homemaker services. 24. Knowing about the effects of alcohol and/or smoking on their treatment. *32. Being actively involved in their religion. 38. Knowing about availability of psychological counseling. 39. Knowing about availability of help from a social worker. 40. What types of food they will have to avoid eating. Part II. Physician-treatment concerns 3. Whether the treatment is going to help. 4. Being able to talk openly with you. *17. How much pain there will be. *19. What kind of tests they will have. 20. Being able to understand what you tell them about their disease and its treatment. *27. If treatment will have an effect on their appearance. 28. Being able to bring new symptoms to your attention. 35. What will happen if the cancer comes back. 36. Knowing that you are available to them. 42. If they are cured.

Patient Theoretical scale

I

II

I

.60

.05

.63

.02

CS

.57

.33

.46

.22

S

.61

.12

.27

.57

I

.62

.13

.49

.27

CS

.62

.34

.22.

.58

H

.61

.23

.54

.32

EC

.52

.33

.46

.33

I

.64

.19

.70

.10

CS

.54

.20

.34

.55

I

.57

.15

.82

-.07

CS

.71

.12

.48

.09

H

.57

.16

.21

.38

H

.68

.33

.57

.34

E

.64

.25

.72

.20

CS

.58

.22

.43

.32

H

.03

.60

.11

.52

EC

.18

.57

.11

.63

C

.32 .26

.53 .45

.51 .58

.38 .41

P EC

.30

.61

.26

.66

34

.63

.41

.38

EC

29

.68

.18

.74

C

16

.61

.15

.75

EC

19

.73

.23

.76

C

07

.65

.12

.78

EC

II

*Item not included in final scale. Note: CS = Concrete services; S = Social functioning; I = Information; H = Health behavior; EC = Effects of cancer and its treatment; E = Emotional functioning; C = Communication; P = Physical functioning.

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Table 2. Scale coefficient alphas, means, and standard deviations for patient and physician samples

Scale General concerns Physician treatment Concerns*

Physician

Alpha

Patient M

SD

Alpha

M

SD

.86 .85

55.62 87.52

19.44 13.55

.88 .82

55.06 80.41

16.89 13.74

*p< .001.

ing pattern across solutions. We labeled the first component "General concerns" because it contained a variety of items relating to adjustment and psychosocial issues. The second component labeled "Physician-treatment concerns" contained items related to communication with the physician and to effects of the disease or treatment process itself. The ratings of items that loaded consistently across solutions were summed to form the final scale scores (see Table 1). Coefficient alphas13 for each scale, by sample, are presented in Table 2. For both samples, alpha coefficients were high (> .83). Internal consistency coefficients in this range suggest homogenous item content. Within each sample, inter-scale correlations were moderately high. The correlation coefficient between the scales was .53 in the physician sample and .50 in the patient sample.

Analysis We used multivariate analysis of variance (MANOVA)14 to test whether the scale scores differed between the patient group and the physician group. This procedure allows one to test the hypothesis of equivalent mean score vectors between groups. We then used uni varíate analysis of variance (ANOVA) follow-up tests to identify which specific scales yielded scores that differed between groups. So that we could compare scores across scales, scale scores were transformed to a 0 to 100 scale ([Scale score — minimum value] / [maximum value — minimum value] x 100). Only patients (N = 81) and physicians (N = 167) who possessed scores on both scales were included in this analysis. In order to facilitate interpretation of any between-group differences, the relationship be-

tween scale scores and physician and patient characteristics were examined. For patients, we assessed the relationship between the two scale scores and functional status as measured by the Karnofsky Performance Status Scale (KPS), 15 cancer type, extent of disease (local, nonlocal), and age. For physicians, we assessed scale scores relative to number of years in practice, board certification, and number of new cancer patients seen in the last year. RESULTS Twenty-two percent of eligible patients did not agree to receive the questionnaire. Of the 186 patients who accepted it, 64% (N = 119) returned it. The mean age of patients completing the questionnaire was 63.3 (SD = 8.0). Thirty-six percent were male and 62% were married. Seventy-three percent were high school graduates, and 25% were college graduates. Forty-one percent reported annual incomes below ten thousand dollars and 23% above thirty thousand dollars. Sixteen percent were diagnosed with lung cancer, 32% with breast cancer, and 51% with colorectal cancer. Respondents to the present study's questionnaire completed more years of education and reported higher income than did the larger study's interview sample. Over half (56%) the physicians returned questionnaires. Of the 195 physicians returning completed questionnaires, the mean number of years in practice was 23.84 (SD = 14.1). Ninety percent of the respondents were male. Sixty-four percent practiced internal medicine, 17 were family practitioners, and 19% reported being in general practice. Sixty percent were board certified. Physicians reported an average of 12 (SD = 13.2) new cancer patients in the past year.

Cancer patients' concerns

Group differences A significant T 2 (F (2,245) = 8.574; p < .001) indicated that the vector of mean scale scores differed between groups. Follow-up univariate tests revealed that patients rated Physiciantreatment concerns (F (1,246) = 14.745; p < .001) as more important than did physicians. General concerns scale scores did not differ between groups. Descriptive statistics for each scale are presented in Table 2. From Table 2 we also observe that compared to General concerns items, both patients and physicians rated Physician-treatment concerns items as more important. Within the patient group, M ANO V As indicated no relationship between scale scores and Karnofsky performance status (high: > 80 vs low: < 80), cancer type (lung, breast, colorectal), extent of disease (local, nonlocal), or education (some high school, high school, some college, college, graduate training). Scale score correlations with patient age were low (.05 for General concerns and — .25 for Physician-treatment concerns). For physicians, correlations between scale scores and both years in practice ( - . 1 5 and .11) and number of new cancer patients seen in the last year (.06 and . 10) were low. Physician scale scores also did not vary as a function of board certification.

DISCUSSION Data from this study indicate that there are statistically significant discrepancies between physicians and patients in their perceptions of the importance of a range of issues involved in cancer treatment. Physicians underestimated the degree of importance patients attached to items such as knowing what will happen if cancer recurs, whether they are cured, and whether treatment is going to help. Despite a societal trend favoring fuller disclosure of diagnosis and prognosis,16'17 physicians in this study underestimated the importance that patients attached to these issues. It may be that our sample was skewed towards the more highly educated, since 42% had at least some college education, but education did not emerge as a variable related

197

to scale scores. Certainly, cognitive information can be an important coping resource for patients, and physicians trying to address these areas may find the items from this study help to identify some specific content areas which patients feel are important. In terms of communication, physicians, regardless of years in practice, board certification, or number of new cancer patients seen in a year, underestimated the importance patients attached to such things as what new symptoms to bring to the doctor's attention, understanding clearly what the doctor is saying, and being able to talk openly. The process of communication with cancer patients is complicated by emotional issues.18 It has been suggested that because of the discomfort that physicians feel when discussing these issues, interaction time with cancer patients tends to be abbreviated.19 One result of the difficulties in doctor-patient communication is vagueness. Physicians may even rationalize that patients do not want to know details of their illness, anyway, and that vague responses allow patients to maintain hope. Such assumptions are challenged to some degree by our data, which suggest that patients want to know things more specifically. When the doctor says, "I'll see you in eight weeks," our data suggests that patients want to know some specific information about what type of symptoms they are likely to experience and some guidelines as to what symptoms or changes should prompt them to contact their physician before eight weeks. A recent survey of educational needs of medical and surgical housestaff in this area indicates that physicians in training are well aware of their difficulties communicating with cancer patients and that in the majority of cases they were not able to identify a physician in practice as a role model.20 Physicians and patients were in accord about the importance of items in a category which addressed some general concerns about cancer epidemiology as well as the impact of cancer on social and emotional functioning. In general, items in this category were rated as less important overall than communication items in the physician-treatment category. This may be because the questionnaire addressed a relatively well functioning population early in the course

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of their illness before the emotional, social, and physical impact become paramount issues. It is less clear whether the physicians rated these items as less important because they were taking the stage of illness into account, or whether their responses turned out to be concordant with the patients' because they tend to see such issues as less important in general. We have demonstrated some lack of concordance between newly diagnosed cancer patients and physicians regarding perceptions of what is important. Lack of concordance may have an impact on patient satisfaction and compliance,21>22 but we were not able to measure these outcomes. However, the validity of patient satisfaction studies is suspect because such ratings are universally high. Most patients report being satisfied most of the time; those who are not tend to opt out of the system.23 Other factors such as social desirability, implicit threat to voicing criticism, and hesitancy to express negative emotions also limit the validity of such responses. Therefore, studies using satisfaction measures would probably underestimate the extent of dissatisfaction associated with any physician-patient discordance. Our study findings must, however, be interpreted in light of several methodological limitations. First, the instrument has not been used before, and while it appears to have satisfactory psychometric properties, the interscale correlations are somewhat high and validation with other study groups is needed. It is rare that the underlying theoretical structure of an instrument surfaces following its first admin-istration. Instrument development is an iterative process requiring repeated administration, modification, and refinement. The results suggest, however, that eight domains may be too discrete to represent the domains of cancer concerns and that fewer domains may be more representative of the structure of this construct. It was not surprising, therefore, that a solution suggestive of the original eight domains of concern was not obtained. Second, it may be that our sample was biased. However, we demonstrated a difference in level of concerns even in a sample of physicians who were interested enough to participate in the project. Also, it should be noted that our sample of patients were newly

diagnosed with little or no functional impairment. The concerns of cancer patients appear to be stage specific,24 and physicians may perceive patients' concerns with different degrees of accuracy at different stages of illness.25'26 Our data have a number of education implications. Teaching about communication with cancer patients is a difficult pedagogical area, because it involves time intensive supervision and because the process engages many emotional issues of the provider. A discussion of teaching and assessment issues in this area is beyond the scope of this paper; however, the problems inherent in teaching about communication with cancer patients can be overcome in part by our findings, which provide a clearer, data-based, understanding of what is highly valued by patients as appropriate content for communicating. Physicians will still have the challenge of how to talk with their patients, but will at least have the advantage of knowing what areas are considered important to talk about. In summary, our investigation found that primary care physicians did not appreciate the importance to newly diagnosed cancer patients of several major areas of care. The areas of greatest discordance relate to what patients want to hear from their doctors about treatment and their concerns about communicating with their doctor. REFERENCES 1. Lewis C, Linet MS, Abeloff MD: Compliance with cancer therapy by patients and physicians. Am J Med 74:673-678, 1983. 2. Davis MS: Variations in patient's compliance with doctors orders. J Med Educ, 41:1037-1048, 1966. 3. Francis V, Korsch BM, Morris MJ: Gap in doctorpatient communication. N Eng J Med 280:5235-540, 1969. 4. Ware JE, Snyder MK: Dimensions of patient attitudes regarding doctors and medical care services. Med Care 13:669-682, 1975. 5. Meyerwitz BE, Parks FC, Spears IK: Adjuvant chemotherapy for breast carcinoma. Psychological implications. Cancer 43:1613-1618, 1979. 6. Heinrich RL, Coscarelli, Schag C: Living with cancer: The cancer inventory of problem situations. J Clin Psychiatry 40(4):972-980, 1984. 7. Locker D, Dent D: Theoretical and methodological issues in sociological studies of consumer satisfaction with medical care. Soc Sci Med 12:283-292, 1978.

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8. Pfefferbaum B, Levenson PM: Adolescent cancer patient and physician responses to a questionnaire on patient concerns. Am J Psychiatry 139:348-351, 1982. 9. Oberst MT: Patients' perceptions of care. Measurement of quality and satisfaction. Cancer 53:2366-2373, 1984. 10. Mor V, Guadagnoli E, Masterson-Allen S, Silliman R, Weitberg A, Glicksman AS, Cummings F, Goldberg RJ, Fretwell M: The Brown University Cancer and Aging Study: A statewide cooperative investigation. R I Med J 71:379-386, 1988. 11. Hotelling H: Analysis of a complex of statistical variables into principal components. J Educ Psychol 24: 417-441, 1933. 12. Cattell RB: The scree test for the number of factors. Multivar Behav Res 1:245-276, 1966. 13. Cronbach LJ: Coefficient alpha and the internal structure of tests. Psychometrika 16:297-334, 1951. 14. Lindeman RH, Merenda PF, Gold RZ: Introduction to Bivariale and Multivariate Analysis. Glenview: Scott Foresman and Co, 1970. 15. Karnofsky DA, Burchenal JH: The clinical evaluation of chemotherapeutic agents in cancer. In, MacLeod CM (ed): Evaluation of Chemotherapeutic Agents New York: Columbia University Press, 1949, pp 191-205. 16. Goldberg RJ: Disclosure of information to adult cancer patients. Issues and update. J Clin Oncol 2(8):948955, 1984. 17. Cassileth BR, Zupkis RV, Sutton-Smith K, March V:

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Information and participation preferences among cancer patients. Ann Intern Med 92:832-836, 1980. Senescu R: The problem of establishing communication with the seriously ill patient. Ann NY Acad Sci 164:66-702, 1967. Blanchard CG, Ruckdeschel JC, Blanchard EB, et al: Interactions between oncologists and patients during rounds. Ann Intern Med 99:694-699, 1983. Goldberg RJ, Guadagnoli E, LaFarge S: A survey of housestaff attitudes towards terminal care education. J Cancer Educ 2:159-163, 1987. Houston CS, Pasanen WE: Patients perceptions of hospital care. J Amer Hosp Assoc 46:70-74, 1972. Lebow JL: Consumer assessments of the quality of medical care. Med Care 12:328-337, 1974. Ware JE, Davies-Avery A, Steart AL: The measurement and meaning of patient satisfaction. Health Med Care Service Rev 1:2-15, 1978. Tessler R, Mechanic D: Consumer satisfaction with prepaid group practice: A comparative study. J Health Soc Behav 16:95-113, 1975. Tagliacozzo DL, Mauksch HO: The patient's view of the patient's role. In, Jaco EG (ed): Patients, Physicians and Illness, 2nd ed. New York: Free Press, 1972, pp 172-185. Nehemkis AM, Gerber KE, Charter RA: The cancer ward: Patient perceptions — staff misperceptions. Psychother Psychosom 41:42-47, 1984.