Brief Report
Development of a Distress Inventory for Cancer: Preliminary Results Thomas BC, Mohan VN, Thomas I, Pandey M Departments of Futures Studies, and Psychology, University of Kerala, and Division of Surgical Oncology, Regional Cancer Centre, Trivandrum, India.
Abstract: CONTEXT: Advances in cancer treatment have led to cure and prolongation of patients' lives; however associated Psychosocial problems, including distress, can detrimentally affect patients 1 compliance with treatment and ultimately, their outcome. Symptom distress has been well addressed in many studies; however, psychological distress has only been quantified by using depression or anxiety scales/checklists or quality of life scales containing a distress sub scale/ component or by the use of scales that are not psychological distress-specific. AIMS: The present study is an attempt to construct a psychological distress inventory for specific use with cancer patients. SETTINGS AND DESIGN: The standardisation sample consisted of 63 randomly selected patients with head and neck cancer who had undergone/ were undergoing curative treatment at the Regional Cancer Centre, Trivandrum. PATIENTS AND METHODS: The Distress Inventory for Cancer contained 57 positively and negatively toned items. An item analysis was conducted, followed by a factor analysis, thereby identifying the domains influencing distress. RESULTS: The final questionnaire contained 26 items subdivided into four domains viz. the personal, spiritual, physical, and the family domains, with each domain providing a sub score. The reliability coefficient (Cronbach's alpha) of the scale was found to be 0.85. CONCLUSIONS: These are the preliminary results of an ongoing study on global distress and tool development process. Reported here is the first step towards development of such tool. (J Postgrad Med 2002;48:16-20) Key Words :Distress, psycho-oncology, head and neck cancer, psychology, distress inventory, malignant neoplasm. Recent advances in diagnosis and treatment of cancer has led their distress to oncologists, or the oncology staff may be too busy to notice sub-clinical distress. Therefore, a viable soluto a significant increase in cancer survival. However, in pursuit of longevity the 'quality' of survival is often overlooked. tion is to develop paper and pencil screening techniques, as With a diagnosis of cancer, all patients irrespective of age, they are inexpensive and convenient methods to identify dis tress, and help to intervene in select cases. and sex are distressed. In specific reference to cancer, distress is defined as "an unpleasant emotional experience of a Review of literature shows that as many as 45 psychological {cognitive, behavioural, tools/instruments have been used to measure psychological Distress is beyond distress, commonest being 'Brief Symptom emotional), social, and/or spiritual nature that normal feelings of sadness interferes with the ability to cope effectively with and fear, and could be Inventory' (BSI). The BSI was designed to reflect cancer and its treatment. Distress extends along a termed 'subsyndromal' as the psychological symptom patterns of psychiatit does not quite reach the ric and medical patients as well as commu nity continuum, ranging from common normal diagnostic category. (non-patient) samples.5 'Hospital Anxiety and feelings of vulnerability, sadness and fears, to Depression Scale', a scale measuring anxiety and depression problems that can become disabling, such as depression, 1 anxiety, panic, social isolation, and spiritual crisis." is validated in identifying cases against the criterion of a Screening for distress has been documented as a dire need psychiatric assessment.5 The 'General Health Question-naire', was developed for detecting independently verifiable for cancer patients.1-4 Besides, distress is not easy to identify, psychiatric morbidity (generally anxiety and depression}.5 as the patients may be reluctant to spontaneously disclose However, none of these scales are able to identify patients A part of the study was presented in the XV Asia Pacific Cancer Conference, held who are highly distressed but do not have clinical symptoms at Chennai, India from December 12-15,1999. of anxiety and depression. Address for Correspondence: The 'Psychological Distress Inventory' developed by Manoj Pandey, MS Morasso et al6 and used in three other studies,7-9 is a validated Department of Surgical Oncology, Regional Cancer Centre self-administered, cancer-specific Italian distress questionnaire. Medical College, P. 0., Trivandrum, Kerala, 695 011, India. E-mail:
[email protected] The present study reports the results of the first phase of the © 2002 Journal of Postgraduate Medicine. Online full text at http://www.jpgmonline.com
Thomas BC et al: Distress and Cancer
tool development process for measuring global distress in cancer patients.
tool and was based on the exclusion of the particular item. The factor analysis was carried out by principal component method of extraction and varimax rotation. Reliability of the final inventory was estimated us-
Subjects and Methods
ing Cronbach's alpha.
A review of literature, patient interviews, and discussions with the experts
Results
in the field led to the identification of six dimensions that could possibly
The mean score obtained was 181 and it ranged from 119 to 248. The item analysis involving Cronbach's alpha for each item indicated that all the 57 items had high individual alpha fidence, and spirituality. Using these dimensions as content areas, items were framed to index the psychological distress in cancer patients. Selecscores. Therefore, all the 57 items were retained for the Factor Analysis. tion of these six dimensions ensured content validity of the tool. However, these were not used as sub-scales in the inventory. The dimensions served The first stage of factor analysis yielded 16 factors. The factor analysis was repeated after restricting the extraction of only as a guideline in the development of the items. The responses to the items were measured on a five point Likert scale. factors to those with eigen value >2. From the six factors thus obtained, items with factor loading 64 Married Divorced Widowed Single Monthly income Low Middle High Number of Children Nil One/Two Three Four Five or more Patient's employment status Employed Unemployed Spouse's employment status Employed Unemployed Religion Hindu Christian Muslim Patient Educational background Primary Middle Secondary SSLC College Months after diagnosis 0- 1.5 1.5-3 3- 9 $9 Locale Rural Urban
10(15.87) 53(84.13) 20 (31.75) 21 (33.33) 22 (34.92) 46 (73.02) 3 (4.76) 10(15.87) 4(6.35) 16(25.4) 24(38.1) 23(36.51) 5 (7.94) 18(28.57) 15(23.81) 13(20.63) 12(19.05) 57 (90.48) 6 (9.52) 27 (45.76) 32 (54.24) 36(57.14) 21 (33.33) 6 (9.52) 24(38.1) 9(14.29) 16(25.4) 7(11.11) 7(11.11)
The response was marked as A, B, C, D or E for strongly agree, agree, undecided, disagree, and strongly disagree respectively.
along a continuum that extends beyond normal psychological and emotional reactions. Distress is therefore beyond normal feelings of sadness and fear, and could be termed 'subsyndromal'10 as it does not quite reach the clinical entity like anxiety or depression. Anxiety can be overcome by use of anxiolytics, however distress needs psychological intervention. The need for supportive counselling and psychological intervention and its positive impact on stress has been highlighted in a number of studies.1526 In the developing countries, it is difficult to provide these services to every patient who is registered at the cancer treatment centre, as the number of patients is very high and resources are limited. Therefore, the development of a screening mechanism seems appropriate and may help in identifying those who specifically warrant an intervention. Besides this, distress screening may assist health professionals to provide patient-specific-intervention processes if the distress level and cause could be identified. Therefore as part of the first phase towards developing a
16(25.4) 15(23.81) 16(25.4) 16(25.4) 37 (58.73) 26(41.27)
80.5. The minimum and maximum obtainable scores for the psychological and family (first and fourth) subscales is 7 and 35 respectively while for the spiritual and physical (second and third) subscales, it is 6 and 30. The mean scores (range) obtained in the present study for various domains were 26.8 (16-35), 18.2 (9-26), 24.6 (6-28), and 20.9 (10-31) respectively for psychological, spiritual, physical, and family domains.
Discussion Normal emotions like fear, worry, and sadness occurs in every person, and exacerbate with the occurrence of a diagnosis of cancer. Clinical entities like anxiety and depression do not develop overnight; instead, they are a cumulative outcome J Postgrad Med 2002;48:16-20
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Thomas BC et al: Distress and Cancer
3. Payne D. Screening identifies in women with breast cancer. Avail distress-screening tool to estimate the thresholds along the able at: http://www.ipos-aspbo a.org/aspboa/breastcancer.htm. distress continuum, a tool to identify the patient's psychologi[Accessed September 12 2000] cal distress level was developed. The tool developed is bilin4. Recognising and treating distress. Managed Care and Cancer 2000; 2. Available at: http://www.cancernetwork.com/journals/oncology/ gual i.e. in English and Malayalam, however, only the o9806q.htm. [Accessed February 5, 2002] Malayalam version has been validated. 5. Bowling A. Measuring Disease. Buckingham: Open University Press; 1995. R 71-8. The Distress Inventory - Cancer reported here measures 6. Morasso G, Costantini M, Baracco G, Borreani C, Capelli M. Assess the 'Global Distress' of cancer patients in terms of four doing psychological distress in cancer patients: Validation of a self-ad mains, viz. Psychological domain, Spiritual domain, Physical ministered questionnaire. Oncology 1996;53:295-302. 7. Morasso G, Costantini M, Viterbori P, Bonci F, Mastro LD, Musso M, domain, and the Family domain. It was noted that though the et al. Predicting mood disorders in breast cancer patients. Eur J Can social and self-confidence dimensions identified by the subcer 2001;37:216-23. 8. Mastro LD, Costantini M, Morasso G, Bonci F, Bergagkio M, Banducci ject experts were removed by the factor analysis, items from S, et al. Impact of two different dose-intensity chemotherapy regi these had rearranged into the Family, Spiritual, and Psychomens on psychological distress in early breast cancer patients. Eur J logical domains. This could be due to the role of family as Cancer 2002;38:359-66. 23-25 9. Morasso G, Capelli M, Viterbori P, Di Leo S, Alberisio A, Costantini primary source of social support, and that the patient's M, et al. Psychological and symptom distress in terminal cancer pa spirituality has a major impact on his/her confidence and coptients with met and unmet needs. J Pain Sympt Manage 1999; 17:402ing with cancer.4'26'28 9. 10. Guidelines needed for distress in cancer patients. Oncology News The present distress inventory has been found to be suitInternational 1997; 6. Available at: http://www.cancernetwork.com/ ably reliable and valid and therefore appropriate for the measjournals/oncnews/n9705b.htm . [Accessed February 5, 2002] 11. Cassidy S. How individual and group psychological support can help urement of the distress levels of the cancer patient. Further cancer patients. Primary Care and Cancer 2000; 20. Available at: studies are on to develop the percentiles and for further valihttp://www.cancernetwork.com/journals/primary/p0005i.htm. [Accessed February 15, 2002] dation of final tool. 12. Spiegel D, Moore R. Imagery and hypnosis in the treatment of canIn the present form, DI-C is well suited for research cer patients. Oncology Huntingt 1997;ll:1179-95. studies dealing with distress and its correlates. However, its _____________ 13. Bonnema J, van Wersch AMEA, van Geel AN, Pruyn JFA, Schmitz P1M, Paul MA, et al. use in the clinical setting as a screening tool Paper-pencil screening Medical and Psychosocial effects of early discharge techniques are inexpensive requires well-established normative scores. after surgery for breast cancer: randomised trial. and convenient to identify Though the psychometric properties of the test BMJ 1998;316:1267-71. distress. 14. Firshein R. Life Support. (content validity, factorial validity, and internal (Research in consistency) have been well established for the tool, there is dicates mind-body connection affects cancer patients). Psychology Today 1999. Available at: http://www.findarticles.com/cf_0/mll75/ scope for further development in the precision of 4_32/55010310/print.jhtml. [Accessed December 15, 2001] measurement. The present study is limited mainly due to the 15. Nordin K, Berglund G, Glimelius B, Sjoden P-O. Predicting anxiety small and homogenous sample size. Additional studies will and depression among cancer patients: a clinical model. Eur J Can cer 2001;37:376-84. also be required to establish the construct validity and the 16. Tominaga K, Andow J, Koyama Y, Numao S, Kurokawa E, Ojima M, test-retest reliability. The English language tool needs to be et al. Family environment, hobbies and habits as Psychosocial pre dictors of survival for surgically treated patients with breast tested in an English speaking population and across a wide cancer. Jpn J Clin Oncol 1998;28:36 -41. social and cultural set-up to establish its cross-cultural 17. Psychosocial support for breast cancer patients provided by mem linguistic utility. bers of the treatment team: a summary of the literature 1976-1996.
Acknowledgement
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The authors would like to acknowledge Dr. Iqbal M. Ahmad, Director, Malabar Cancer Centre, Tellichery, Dr. Paul Sebastian, Associate Professor and Head, Surgical Oncology, Dr. K. Ramadas, Associate Professor, Radiation Oncology, and Prof. M. Krishnan Nair, Director, Regional Cancer Centre, Trivandrum for their help in carrying out this study.
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