The Survivor Unmet Needs Survey (SUNS) for haematological cancer survivors: A cross-sectional study assessing the relevance and psychometric properties

BMC Health Services Research

Volumn 14, Issue 1, 2014, Pages

  Hall, Alix ^a   D'Este, Catherine ^b   Tzelepis, Flora ^a   Sanson Fisher, Rob ^a   Lynagh, Marita ^a  

^a UNIVERSITY OF NEWCASTLE   (Australia)

^b The Australian National University   (Australia)

Author keywords

Haematological cancer survivors; Needs assessment; Psycho oncology; Psychometric evaluation; Unmet needs

Indexed keywords

ADOLESCENT; ADULT; AGED; CROSS-SECTIONAL STUDY; FEMALE; HEMATOLOGIC DISEASE; HUMAN; MALE; MIDDLE AGED; NEEDS ASSESSMENT; PSYCHOLOGY; PSYCHOMETRY; QUESTIONNAIRE; STANDARDS; SURVIVOR; VALIDATION STUDY; VERY ELDERLY; YOUNG ADULT;

ADOLESCENT; ADULT; AGED; AGED, 80 AND OVER; CROSS-SECTIONAL STUDIES; FEMALE; HEMATOLOGIC NEOPLASMS; HUMANS; MALE; MIDDLE AGED; NEEDS ASSESSMENT; PSYCHOMETRICS; QUESTIONNAIRES; SURVIVORS; YOUNG ADULT;

EID: 84901314524     PISSN: None     EISSN: 14726963     Source Type: Journal    
DOI: 10.1186/1472-6963-14-211     Document Type: Article

References (61)

1. Blood cancers, chemotherapy and the risks of neutropenia. Butters G, Nurs Times 2011 107 19
2. National Institute for Clincial Excellence (NICE), Health Care Services for Haematological Cancers London: National Health Service 2003
3. National Institute for Clinical Excellence (NICE), Guidance On Cancer Services Improving Outcomes In Haematological Cancers: The Manual London: National Health Service 2003
4. Incidence of haematological malignancy by sub-type: A report from the Haematological Malignancy Research Network. Smith A, Howell D, Patmore R, Jack A, Roman E, Br J Haematol 2011 105 1684 1692
5. American Cancer Society, Cancer Facts and Figures 2012 Atlanta, Georgia: American Cancer Society Inc. 2012
6. Australian Institute of Health and Welfare (AIHW), Cancer survival and prevalence in Australia: period estimates from 1982 to 2010 Canberra: AIHW Cancer Series no. 69. Cat. no. CAN 65. 2012
7. Recent cancer survival in Europe: A 2000-02 period analysis of EUROCARE-4 data. Verdecchia A, Francisci S, Brenner H, Gatta G, Micheli A, Mangone L, Kunkler I, The EUROCARE-4 working group, Lancet Oncol 2007 8 784 796 10.1016/S1470-2045(07)70246-2 17714993 (Pubitemid 47321601)
8. Support needs of patients with a diagnosis of follicular lymphoma. Horn J, Campbell K, Cancer Nurs Pract 2010 9 34 37 10.7748/cnp2010.04.9.3.34.c7696
9. Unmet supportive care needs, psychological well-being and quality of life in patients living with multiple myeloma and their partners. Molassiotis A, Wilson B, Blair S, Howe T, Cavet J, Psychooncology 2011 20 88 97 10.1002/pon.1710 20187072
10. The symptom burden of patients with hematological malignancy: A cross-sectional observational study. Manitta V, Zordan R, Cole-Sinclair M, Nandurkar H, Philip J, J Pain Symptom Manage 2011 42 432 442 10.1016/j.jpainsymman.2010.12.008 21477979
11. Predicting psychological distress in patients with leukaemia and lymphoma. Montgomery C, Pocock M, Titley K, Lloyd K, J Psychosom Res 2003 54 289 292 10.1016/S0022-3999(02)00396-3 12670604 (Pubitemid 38365990)
12. Living with multiple myeloma: Experiences of patients and their formal caregivers. Molassiotis A, Wilson B, Blair S, Howe T, Cavet J, Support Care Cancer 2011 19 101 111 10.1007/s00520-009-0793-1 19998045
13. Access to care and impacts of cancer on daily life: Do they differ for metropolitan versus regional hematological cancer survivors? Paul CL, Hall AE, Carey ML, Cameron EC, Clinton-McHarg T, J Rural Health 2013 29 43 S50 10.1111/jrh.12020 23944279
14. Employment and work-related issues in cancer survivors. Mehnert A, Crit Rev Oncol Hematol 2011 77 109 130 10.1016/j.critrevonc.2010.01.004 20117019
15. Factors affecting cancer survivors' employment and work ability. Taskila T, Lindbohm L, Acta Oncol 2007 46 446 451 10.1080/02841860701355048 17497311 (Pubitemid 46752265)
16. State Government Victoria, Providing Optimal Cancer Care: Supportive care policy for Victoria Melbourne: Metropolitan Health and Aged Care Services Division Victorian Government Department of Human Services. 2009
17. Howell D, Currie S, Mayo S, Jones G, Boyle M, Hack T, Green E, Hoffman L, Simpson J, Collacutt V, McLeod D, Digout C, A Pan-Canadian clinical practice guideline: Assessment of psychosocial health care needs of the adult cancer patient Toronto: Canadian Partnership Against Cancer (Cancer Journey Action Group) and the Canadian Association of Psychosocial Oncology 2009
18. Brief assessment of adult cancer patients' perceived needs: development and validation of the 34-item Supportive Care Needs Survey (SCNS-SF34). Boyes AW, Girgis A, Lecathelinais C, J Eval Clin Pract 2009 15 602 606 10.1111/j.1365-2753.2008.01057.x 19522727
19. The unmet supportive care needs of patients with cancer. Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P, The Supportive Care Review Group, Cancer 2000 88 225 236 (Pubitemid 30027700)
20. What are the unmet supportive care needs of people with cancer? A systematic review. Harrison JD, Young JM, Price MA, Butow P, Solomon MJ, Support Care Cancer 2009 17 1117 1128 10.1007/s00520-009-0615-5 19319577
21. Needs assessment for cancer patients and their families. Wen KY, Gustafson DH, Health Qual Life Outcomes 2004 2 11 10.1186/1477-7525-2-11 14987334 (Pubitemid 39112019)
22. Assessment of the need for palliative care as perceived by individual cancer patients and their families: A review of instruments for improving patient participation in palliative care. Osse BHP, Vernooij-Dassen MJFJ, de Vree BPW, Schade E, Grol RPTM, Cancer 2000 88 900 911 10.1002/(SICI)1097- 0142(20000215)88:4<900::AID-CNCR22>3.0.CO;2-2 10679661 (Pubitemid 30091111)
23. Psychosocial health care needs assessment of adult cancer patients: A consensus-based guideline. Howell D, Mayo S, Currie S, Jones G, Boyle M, Hack T, Green E, Hoffman L, Collacutt V, McLeod D, Simpson J, Support Care Cancer 2012 20 3343 3354 10.1007/s00520-012-1468-x 22581015
24. Quality criteria were proposed for measurement properties of health status questionnaires. Terwee CB, Bot SDM, de Boer MR, van der Windt DAWM, Knol DL, Dekker J, Bouter LM, de Vet HCW, J Clin Epidemiol 2007 60 34 42 10.1016/j.jclinepi.2006.03.012 17161752 (Pubitemid 44856236)
25. Measuring quality of life in cancer survivors: A methodological review of existing scales. Pearce NJM, Sanson-Fisher R, Campbell HS, Psychooncology 2008 17 629 640 10.1002/pon.1281 17973235
26. Assessing health status and quality-of-life instruments: Attributes and review criteria. Scientific Advisory Committee of the Medical Outcomes Trust, Qual Life Res 2002 11 193 205 10.1023/A:1015291021312 12074258 (Pubitemid 34553501)
27. The development and evaluation of a measure to assess cancer survivors' unmet supportive care needs: The CaSUN (Cancer Survivors' Unmet Needs measure). Hodgkinson K, Butow P, Hunt GE, Pendlebury S, Hobbs KM, Lo SK, Wain G, Psychooncology 2007 16 769 804
28. Psychometric properties of cancer survivors' unmet needs survey. Campbell HS, Sanson-Fisher R, Turner D, Hayward L, Wang XS, Taylor-Brown J, Support Care Cancer 2010 19 221 230 20099001
29. Unmet needs of Australian and Canadian haematological cancer survivors: A cross-sectional international comparative study. Hall AE, Campbell HS, Sanson-Fisher R, Lynagh MC, D'Este C, Burkhalter R, Carey M, Psychooncology 2013 22 2032 2038 10.1002/pon.3247 23436539
30. Format and readability of an enhanced invitation letter did not affect participation rates in a cancer registry-based study: A randomized controlled trial. Hall AE, Sanson-Fisher RW, Lynagh MC, Threlfall T, D'Este CA, J Clin Epidemiol 2013 66 85 94 10.1016/j.jclinepi.2012.07.016 23102853
31. Recruitment of representative samples for low incidence cancer populations: Do registries deliver? Clinton-McHarg T, Carey M, Sanson-Fisher R, Tracey E, BMC Med Res Methodol 2011 11 5 21235819
32. Research recruitment through US central cancer registries: Balancing privacy and scientific issues. Beskow LM, Sandler RS, Weinberger M, Am J Public Health 2006 96 1920 1926 10.2105/AJPH.2004.061556 16571700 (Pubitemid 44655914)
33. Psychometric properties of the 42-item and 21-item versions of the Depression Anxiety Stress Scales in clinical groups and a community sample. Antony MM, Bieling PJ, Cox BJ, Enns MW, Swinson RP, Psychol Assess 1998 10 176 181 (Pubitemid 28292803)
34. Confirmatory factor analysis of the Depression-Anxiety-Stress Scales in depressed and anxious patients. Clara IP, Cox BJ, Enns MW, J Psychopathology Behav Assessment 2001 23 61 67 10.1023/A:1011095624717 (Pubitemid 33635993)
35. School of Psychology University of New South Wales, DASS FAQ (Frequently Asked Questions) Accessed March 2013 [ http://www2.psy.unsw.edu.au/Groups/Dass/ DASSFAQ.htm ]
36. The validity of the 21-item version of the Depression Anxiety Stress Scales as a routine clinical outcome measure. Ng F, Trauer T, Dodd S, Callaly T, Campbell S, Berk M, Acta Neuropsychiatr 2007 19 304 310 10.1111/j.1601-5215. 2007.00217.x (Pubitemid 47480990)
37. The short-form version of the Depression Anxiety Stress Scales (DASS-21): Construct validity and normative data in large non-clinical sample. Henry JD, Crawford JR, Brit J Clin Psychol 2005 44 227 239 10.1348/014466505X29657 (Pubitemid 40873436)
38. Are factor analytical techniques used appropriately in the validation of health status questionnaires? A systematic review on the quality of factor analysis of the SF-36. de Vet HCW, Ader HJ, Terwee CB, Pouwer F, Qual Life Res 2005 14 1203 1218 10.1007/s11136-004-5742-3 16047498 (Pubitemid 40895744)
39. Best practices in exploratory factor analysis: Four recommendations for getting the most from your analysis. Costello AB, Osborne JW, Prac Assess Res Eval 2005 10 9
40. Evaluating the use of Exploratory Factor Analysis in psychological research. Fabrigar LR, Wegener DT, MacCallum RC, Strahan EJ, Psychol Methods 1999 4 272 299
41. Scale development research: A content analysis and recommendations for best practice. Worthington RL, Whittaker TA, Couns Psychol 2006 34 806 838 10.1177/0011000006288127 (Pubitemid 44653069)
42. Patients' supportive care needs beyond the end of cancer treatment: A prospective, longitudinal survey. Armes J, Crowe M, Colbourne L, Morgan H, Murrells T, Oakley C, Palmer N, Ream E, Young A, Richardson A, J Clin Oncol 2009 27 6172 6179 10.1200/JCO.2009.22.5151 19884548
43. Unmet needs of gynaecological cancer survivors: Implications for developing community support services. Beesley V, Eakin E, Steginga S, Aitken J, Dunn J, Battistutta D, Psychooncology 2008 17 392 400 10.1002/pon.1249 17680554 (Pubitemid 351513688)
44. Primary health and supportive care needs of long-term cancer survivors: A questionnaire survey. Harrison SE, Watson EK, Ward AM, Khan NF, Turner D, Adams E, Forman D, Roche MF, Rose PW, J Clin Oncol 2011 29 2091 2098 10.1200/JCO.2010.32.5167 21519023
45. Prevalence and correlates of cancer survivors' supportive care needs 6 months after diagnosis: A population-based cross-sectional study. Boyes AW, Girgis A, D'Este CA, Zucca A, BMC Cancer 2012 12 150 10.1186/1471-2407-12-150 22510387
46. Perceived needs of women diagnosed with breast cancer: Rural versus urban location. Girgis A, Boyes A, Sanson-Fisher R, Burrows S, Aust New Zeal Public Health 2000 24 166 173 10.1111/j.1467-842X.2000.tb00137.x (Pubitemid 30218925)
47. Young adult cancer survivors' psychosocial well-being: A cross-sectional study assessing quality of life, unmet needs, and health behaviors. Hall AE, Boyes AW, Bowman J, Walsh RA, James EL, Girgis A, Support Care Cancer 2012 20 1333 1341 10.1007/s00520-011-1221-x 21720746
48. Supportive care needs: Are patients with lung cancer a neglected population? Li J, Girgis A, Psychooncology 2006 15 509 516 10.1002/pon.983 16292789 (Pubitemid 44018686)
49. When the safety net of treatment has been removed: Patients' unmet needs at the completion of treatment for haematological malignancies. Lobb EA, Joske D, Butow P, Kristjanson LJ, Cannell P, Cull G, Augustson B, Patient Educ Couns 2009 77 103 108 10.1016/j.pec.2009.02.005 19272749
50. The supportive care needs of men with prostate cancer (2000). Steginga SK, Occhipinti S, Dunn J, Gardiner RA, Heathcote P, Yaxley J, Psychooncology 2001 10 66 75 10.1002/1099-1611(200101/02)10:1<66::AID-PON493>3.0.CO;2-Z 11180578 (Pubitemid 32106778)
51. Mapping the quality of life and unmet needs of urban women with metastatic breast cancer. Aranada S, Schofield P, Weih L, Yates P, Milne D, Faulkner R, Voundouris N, Eur J Cancer Care 2005 14 211 222 10.1111/j.1365-2354. 2005.00541.x (Pubitemid 40853709)
52. Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: The Cancer Needs Questionnaire-Young People (CNQ-YP). Clinton-McHarg T, Carey M, Sanson-Fisher R, D'Este C, Shakeshaft A, Health Qual Life Outcomes 2012 10 13 10.1186/1477-7525-10-13 22284545
53. The Kappa statistic in reliability studies: Use, interpretation, and sample requirements. Sim J, Wright CC, Phys Ther 2005 85 257 268 15733050 (Pubitemid 40333545)
54. The measurement of observer agreement for categorical data. Landis JR, Koch GG, Biometrics 1977 33 159 174 10.2307/2529310 843571 (Pubitemid 8054849)
55. Factor analysis in the development and refinement of clinical assessment instruments. Floyd FJ, Widaman KF, Psychol Assess 1995 7 286 299
56. Sample size requirements for precise estimates of reliability, generalizability, and validity coefficients. Charter RA, J Clin Exp Neuropsychol 1999 21 559 566 10.1076/jcen.21.4.559.889 10550813
57. Study samples are too small to produce sufficiently precise reliability coefficients. Charter RA, J Gen Psychol 2003 130 117 129 10.1080/ 00221300309601280 12773016 (Pubitemid 37206642)
58. Development and validation of the Short-Form Survivor Unmet Needs Survey (SF-SUNS). Campbell HS, Hall AE, Sanson-Fisher RW, Barker D, Turner D, Taylor-Brown J, Support Care Cancer 2014 22 4 107 109
59. Non-Hodgkin's lymphoma survivors' fertility and sexual function-related information needs. Hammond CTC, Beckjord EB, Arora NK, Bellizzi KM, Jeffery DD, Aziz NM, Fertil Steril 2008 90 1256 1258 10.1016/j.fertnstert.2007.08.081 18083170
60. The rationale, design, and implementation of the American Cancer Society's studies of cancer survivors. Smith T, Stein KD, Mehta CC, Kaw C, Kepner JL, Buskirk T, Stafford J, Baker F, Cancer 2007 109 1 12 10.1002/cncr.22387 17146781 (Pubitemid 46120189)
61. Methods to increase response to postal and electronic questionnaires (Review). Edwards PJ, Roberts I, Clarke MJ, Diguiseppi C, Wentz R, Kwan I, Cochrane Database Syst Rev 2009 Issue 3. Art. No.: MR000008. doi:10.1002/14651858.MR000008.pub4