Development and evaluation of an instrument to assess social difficulties in routine oncology practice Abstract Purpose: To develop and preliminarily evaluate a Social Difficulties Inventory (SDI) for use in oncology practice. Methods: Item generation from patients (n=96), staff (n=49) and the literature. Questions constructed and pre-tested (n=42) resulting in a 22-item questionnaire. Psychometric evaluation (n=271) assessed frequency of endorsement, factor structure, summated scales and construct validity followed by randomisation to criterion validity or test-retest arms. Results: Items met preset frequency of endorsement criteria. Factor analysis revealed a four-factor structure, three clearly definable, (1) Physical ability, (2) Providing for the family and (3) Contact with others, explaining 45.8% variance. Summated scales developed from these demonstrated good reliability (Cronbach’s alpha > 0.7) and were used to test and confirmed construct validity. Several comparators from the Life Events and Difficulties Schedule (LEDS) and CAncer Rehabilitation Evaluation System Short Form (CARES-SF) tested criterion validity and majority agreements were moderate to good. Test–retest reliability was good with most kappa values > 0.6. One item was eliminated resulting in a 21-item questionnaire. Conclusion: The SDI is relevant and easy to understand. Initial psychometric evaluation was encouraging. Ongoing work to evaluate the clinical meaning and utility of the instrument and to examine the relationships between SDI scores and clinical outcomes will provide guidance about its usefulness as an assessment tool in routine oncology practice. Keywords Patient centred assessment Quality of life Social difficulties Abbreviations SDI
Social Difficulties Inventory
Quality of Life
European Organization for Research and Treatment of Cancer QLQ-C30
Functional Assessment of Cancer Therapy general measure
Bath Information and Data Services
CAncer Rehabilitation Evaluation System
CAncer Rehabilitation Evaluation System Short Form
Functional Living Index-Cancer
Social Problem Questionnaire
Life Events and Difficulties Schedule
Hospital Anxiety and Depression Scale
Mental Health Inventory 5
Statistical Package for Social Sciences
Presented in part at the British Cancer Research Meeting (poster presentation) 2001 and at the World Congress of Psycho-Oncology (poster presentation) 2003.
References Wells, NL, Turney, ME. 2001 Common issues facing adults with cancer Lauria, MM Clark, EJ Hermann, JF Stearns, NM eds. Social Work in Oncology. American Cancer Society Atlanta 27 43 Google Scholar Cull, A, Stewart, M, Altman, DG 1995 Assessment of and intervention for psychosocial problems in routine oncology practice. Br J Canc 72 229 235 Google Scholar Nezu, CM, Nezu, AM, Friedman, SH, Houts, PS, DelliCarpini, LA, Bildner, C, et al. 1999 Cancer and psychological distress: two investigations regarding the role of social problem-solving. J Psychosoc Oncol 16 27 40 Google Scholar Holland, JC 1997 Preliminary guidelines for the treatment of distress. Oncology 11 109 114 Google Scholar Aaronson, NK, Ahmedzi, S, Bergamn, B, Bullinger, M, Cull, A, Duez, NJ, et al. 1993 The European Organization for Research and Treatment of Cancer QLQ-C30: A quality of life instrument for use in international clinical trials in oncology. J Natl Canc Inst 85 365 376 Google Scholar Cella, DF, Tulsky, DS, Gray, G, Sarafian, B, Linn, E, Bonomi, A, et al. 1993 The Functional Assessment of Cancer Therapy scale: Development and validation of the general measure. J Clin Oncol 11 570 579 PubMed Google Scholar Cull, A, Gould, A, House, A, Smith, A, Strong, V, Velikova, G, et al. 2001 Validating automated screening for psychological distress by means of computer touchscreens for use in routine oncology practice. Br J Canc 85 1842 1849 Google Scholar Newell, S, Girgis, A, Sanson-Fisher, RW, Stewart, J 1997 Are touchscreen computer surveys acceptable to medical oncology patients? J Psychosoc Oncol 15 37 46 Google Scholar Taenzer, PA, Speca, M, Atkinson, MJ, Bultz, BD, Page, S, Harasym, P, et al. 1997 Computerized quality-of-life screening in an oncology clinic. Canc Pract 5 168 175 Google Scholar Velikova, G, Wright, EP, Smith, AB, Cull, A, Gould, A, Forman, D, et al. 1999 Automated collection of quality-of-life data: a comparison of paper and computer touch-screen questionnaires. J Clin Oncol 17 998 1007 Google Scholar Wright, EP, Selby, PJ, Crawford, M, Johnston, C, Gillibrand, A, Perren, TJ, et al. 2003 Feasibility and compliance of automated measurement of quality of life in oncology practice. J Clin Oncol 21 374 382 Google Scholar Velikova, G, Brown, JM, Smith, AB, Selby, PJ 2002 Computer based quality of life questionnaires may contribute to doctor patient interactions. Br J Canc 86 51 59 Google Scholar
Thomas C, Morris S, Soothill K, McIllmurray K, Francis B, Harman J. What are the Psychosocial Needs of Cancer Patients and Their Carers? Lancaster University, Institute for Health Research Lancaster University. 2001: 1–259.
Google Scholar Wright, EP, Kiely, MA, Lynch, P, Cull, A, Selby, PJ 2002 Social problems in oncology. Br J Canc 87 1099 1104 Google Scholar Wright, EP, Selby, PJ, Gould, A, Cull, A 2001 Detecting Social Problems in Cancer Patients. Psycho Oncol 10 242 250 Google Scholar
Sprangers M, Cull A, Groenvold M. EORTC Quality of Life Study Group Guidelines for Developing Questionnaire Modules. 2nd ed. Brussels, EORTC, 1998.
Google Scholar Sudman, S, Bradburn, NM 1982Asking Questions. Jossey-Bass Ind., Publishers San Francisco, London Google Scholar Schag, CAC, Heinrich, RL 1990 Development of a comprehensive quality of life measurement tool: CARES. Oncology 4 29 50 Google Scholar Schipper, H, Clinch, J, McMurray, A, Levitt, M 1984 Measuring the quality of life of cancer patients: The Functional Living Index-Cancer: development and validation. J Clin Oncol 2 107 118 Google Scholar Selby, PJ, Chapman, JAW, Etazadi-Amoli, J, Dalley, D, Boyd, NF 1984 The development of a method for assessing the quality of life of cancer patients. Br J Canc 50 13 22 Google Scholar Harrison, J, Maguire, P, Ibbotson, T, MacLeod, R, Hopwood, P 1994 Concerns, confiding and psychiatric disorder in newly diagnosed cancer patients: A descriptive study. Psycho Oncol 3 173 179 Google Scholar Corney, RH, Clare, AW 1985 The construction, development and testing of a self-report questionnaire to identify social problems. Psychol Med 15 637 649 Google Scholar Bonevski, B, Sanson-Fisher, RW, Girgis, A, Burton, L, Cook, P, Boyes, A 2000 Evaluation of an instrument to assess the needs of patients with cancer. Cancer 88 217 225 Google Scholar Schag, CAC, Hienrich, RL 1991 Cancer Rehabilititation Evaluation System–short form (CARES-SF). Cancer 68 1406 1413 Google Scholar Brown, GW, Harris, TO 1989Life Events and Illness. Unwin Hyman London Google Scholar Brown, GW Harris, T eds. 1978Life-events and Depression. Tavistock London 100 116 Google Scholar Brown, GW 1993 Life events and affective disorder: Replication and limitations. Psychosom Med 55 248 259 Google Scholar Brown, GW, Harris, TO, Eales, MJ 1996 Social factors and comorbidity of depressive and anxiety disorders. Br J Psychiatr 168(suppl. 30) 50 57 Google Scholar
Yorkshire Health. A Census Based View of the Population and its Health. Harrogate, Yorkshire Health. Yorkshire Health public health report, 1994: 1–67.
Google Scholar Zigmond, AS, Snaith, RP 1983 The Hospital Anxiety and Depression Scale. Acta Psychiatr Scand 67 361 370 PubMed Google Scholar Berwick, DM, Murphy, JM, Goldman, PA, Ware, JE, Barsky, AJ, Weinstein, MC 1991 Performance of a five-item mental health screening test. Med Care 29 169 176 Google Scholar Hair, JF Anderson, RE Tatham, RL Black, WC eds. 1998Multivariate Data Analysis Prentice-Hall, Inc., Upper Saddle River 87 138 Google Scholar Harrison, J, Maguire, P 1995 Influence of age on psychological adjustment to cancer. Psycho Oncol 4 33 38 Google Scholar Altman, DG. eds. 1991Practical Statistics for Medical Research Chapman & Hall London 396 439 Google Scholar