Needs assessment for cancer patients and their families

Kuang-Yi Wen, David H Gustafson, Kuang-Yi Wen, David H Gustafson

Abstract

Background: The assessment of needs for cancer care is a critical step in providing high quality care and achieving cancer patients' and families' satisfaction. Instruments can be used to assess needs and guide cancer care planning. This study discusses the importance of the needs assessment, relationships between needs, satisfaction and quality of life; and reviews the assessment instruments of needs experienced by cancer patients and their families.

Methods: A systematic search was conducted in MEDLINE and CANCERLIT data bases. Instruments were evaluated based on their conceptual and measurement models as well as their demonstrated reliability and validity. The authors also sought information pertaining to instruments' burden of administration and responsiveness. Measures compromised by a lack of published psychometric description were not included.

Results: This search identified 17 patient needs assessment instruments and seven family needs assessment instruments. The development and psychometric proprieties of most of these instruments were well documented. However, data on their responsiveness and burden of administration were scarce.

Conclusions: Each selected instrument meets some but not all of our criteria for validity, reliability, responsiveness and burden. It is questionable whether any instrument can be developed meeting all the requirements. However, there is still a need to continue researching and developing needs assessment instruments leading to effective intervention and improving quality of cancer care.

Figures

Figure 1
Figure 1
Possible proximal relationship between needs and quality of life
Figure 2
Figure 2
Possible relationship between needs and satisfaction
Figure 3
Figure 3
Possible relationship between needs, satisfaction and quality of life
Figure 4
Figure 4
Possible relationship between needs and quality of life
Figure 5
Figure 5
Relationship with satisfaction
Figure 6
Figure 6
Relationship of needs to satisfaction and quality of life
Figure 7
Figure 7
Search and selection process

References

    1. Berwick D. The total customer relationship in health care: broadening the bandwidth. The Joint Commission Journal On Quality Improvement. 1997;23:245–250.
    1. Ross C, Steward C, Sinacore JM. The importance of patient preferences in the measurement of health care satisfaction. Medical Care. 1993;31:1138–1149.
    1. Medicine of Institute. In: Approaching death: Improving care at the end of life. Field M and Cassel C, editor. Washington, D.C.; 1997.
    1. Bretsher M, Rummons R, Sloan J, Kaur J,, Bartlett A, Borkenhagen L, Loprinzi C. Quality of life in hospice patients. Psychosomatics. 1999;40:309–313.
    1. Silveira M, EiPiero A, Gerrity M, Geudtner C. Patients knowledge of options at the end of life. Journal of the American Medical Association. 2000;284:2483–2488. doi: 10.1001/jama.284.19.2483.
    1. Investigators SUPPORT. A controlled trial to improve care for seriously ill hospitalized patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) Journal of the American Medical Association. 1995;274:1591–1598. doi: 10.1001/jama.274.20.1591.
    1. Suchman AL, Markakis K, Beckman HB, Frankel R. A model of empathic communication in the medical interview. Journal of the American Medical Association. 1997;277:678–682. doi: 10.1001/jama.277.8.678.
    1. Guadagnoli E, Ward P. Patient participation in decision-making. Social Science and Medicine. 1998;47:329–339. doi: 10.1016/S0277-9536(98)00059-8.
    1. Frosch DL, Kaplan RM. Shared decision making in clinical medicine: past research and future directions. American Journal of Preventive Medicine. 1999;17:285–294. doi: 10.1016/S0749-3797(99)00097-5.
    1. Charles C, Gafni A, Whelan T. Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model. Social Science and Medicine. 1999;49:651–661. doi: 10.1016/S0277-9536(99)00145-8.
    1. Maguire P. Improving communication with cancer patients. European Journal of Cancer. 1999;35:1415–1422. doi: 10.1016/S0959-8049(99)00178-1.
    1. Cull A, Stewart M, Altman D. Assessment of and intervention for psychosocial problems in routine oncology practice. British Journal of Cancer. 1995;72:229–235.
    1. Osoba D. Rationale for the timing of health-related quality-of-life-assessments in oncological palliative therapy. Cancer Treat Rev. 1996;22 Suppl A:69–73.
    1. Ford S, Fallowfield L, Lewis S. Doctor-patient interactions in oncology. Social Science and Medicine. 1996;42:1511–1519. doi: 10.1016/0277-9536(95)00265-0.
    1. Marvel MK, Epstein RM, Flowers K, Beckman HB. Soliciting the patient's agenda: have we improved? Journal of the American Medical Association. 1999;281:283–287. doi: 10.1001/jama.281.3.283.
    1. Holland JC, Almanza J. Giving bad news: is there a kinder, gentler way? Cancer. 1999;86:738–740. doi: 10.1002/(SICI)1097-0142(19990901)86:5<738::AID-CNCR2>;2-L.
    1. Kim MK, Alvi A. Breaking the bad news of cancer: the patient's perspective. Laryngoscope. 1999;109:1064–1067. doi: 10.1097/00005537-199907000-00010.
    1. Sabo D. Men, death anxiety and denial. In: Clark D, Fritz J and Rieder P, editor. Clinical Sociological Perspectives of Illness and Loss. Philadelphia, Charles Press; 1990. pp. 71–84.
    1. Schulz R, Beach S. Caregiving as a risk factor for mortality. Journal of the American Medical Association. 1999;282:2215–2219. doi: 10.1001/jama.282.23.2215.
    1. Cegala DJ. A study of doctors' and patients' communication during a primary care consultation: Implications for communication training. Journal of Health Communication. 1997;2:169–194. doi: 10.1080/108107397127743.
    1. Northouse L. Social support in patients and husbands adjustment to breast cancer. Nursing Research. 1988;37:91–95.
    1. Northouse P, Northouse L. Communication and cancer: Issues confronting patients, health professionals and caregivers. Journal of Psychosocial Oncology. 1987;5:17–46.
    1. Peters-Golden H. Varied perceptions of social support in the illness experience. Social Science Medicine. 1982;16:463–491. doi: 10.1016/0277-9536(82)90057-0.
    1. Northouse L, Peters-Golden H. Cancer and the family: Strategies to assist spouses. Seminars in Oncology Nursing. 1993;9:74–82.
    1. Vitaliano P. Psychological and physical concomitants of caregiving; introduction to special issue. Annals of behavioral medicine. 1997;19:75–77.
    1. Northouse L. A longitudinal study of the adjustment of patients and husbands to breast cancer. Oncol Nurs Forum. 1989;16:511–516.
    1. Ell K, Nishimoto R, Mantell J. Longitudinal analysis of psychological adaptation among family members of patients with cancer. Journal of psychosomatic research. 1988;32:429–438. doi: 10.1016/0022-3999(88)90026-8.
    1. Wilson S, Morse JM. Living with a wife undergoing chemotherapy. Image J Nurs Sch. 1991;23:78–84.
    1. Wilkerson S. Factors which influence how nurses communicate with cancer patients. Journal of Advance Nursing. 1991;16:677–688.
    1. Grobe ME, Ahmann DL, Ilstrup DM. Needs assessment for advance cancer patients and their families. Oncol Nurs Forum. 1982;9:26–30.
    1. Longman AJ, Atwood JR, Sherman JB, Benedict J, Shang TC. Care needs of home-based cancer patients and their caregivers. Cancer Nursing. 1992;15:182–190.
    1. Bruera E, Kehn N, Miller MJ, Selmser P, Macmillan K. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. Journal of Palliative Care. 1991;7:6–9.
    1. Davis SW, Quinn S, Fox L, MacElwee N, Engstrom PF. Satisfaction among cancer outpatients. Progress in clinical and biological research. 1988;278:227–232.
    1. Thomas S, Glynne JR, Chait I. Is it worth the wait? A survey of patients' satisfaction with an oncology outpatient clinic. European journal of cancer care. 1997;6:50–58.
    1. Schag CC, Heinrich RL, Ganz PA. Cancer Inventory of Problem Situations: An instrument for assessing cancer patients' rehabilitation needs. Journal of Psychosocial Oncology. 1983;1:11–24.
    1. Meyerowitz BE, Heinrich RL, Schag CC, Burish TG, Bradley L. Coping with chronic illness: research and applications. A competency-based approach to coping with cancer. New York, Academic Press; 1983. pp. 137–158.
    1. Ganz PA, Rofessart J, Polinsky ML, Schag CC, Heinrich RL. A comprehensive approach to the assessment of cancer patients' rehabilitation needs: the Cancer Inventory of Problem Situations and a companion interview. Journal of psychosocial Oncology. 1986;4:27–42.
    1. Ganz PA, Shag CC, Polinsky ML, Heinrich RL, Flack VF. Rehabilitation needs and breast cancer: the first month after primary therapy. Breast Cancer Research and Treatment. 1987;10:243–253.
    1. Schag CC, Ganz PA, Heinrich RL. Cancer Rehabilitation Evaluation System-Short Form (CARES-SF). A cancer specific rehabilitation and quality of life instrument. Cancer. 1991;15:1406–1413.
    1. Wingate AL, Lackey NR. A description of the needs of noninstitutionalized cancer patients and their primary care givers. Cancer Nursing. 1989;12:216–225.
    1. Gates MF, Lackey NR, White MR. Needs of Hospice and clinic patients with cancer. Cancer Practice. 1995;3:226–232.
    1. Foot G, Sanson-Fisher R. Measuring the unmet needs of people living with cancer. Cancer Forum. 1995;19:131–135.
    1. Girgis A, Boyes A, Sanson-Fisher RW, Burrows S. Perceived needs of women diagnosed with breast cancer: rural versus urban location. Australian and New Zealand journal of Public Health. 2000;24:166–173.
    1. Bonevski B,, Sanson-Fisher R,, Girgis A,, Burton L,, Cook P,, Boyes A. Evaluation of an instrument to assess the needs of patients with cancer. Cancer. 2000;88:217–225. doi: 10.1002/(SICI)1097-0142(20000101)88:1<217::AID-CNCR29>;2-Y.
    1. McCusker J. Development of scales to measure satisfaction and preferences regarding long-term and terminal care. Medical Care. 1984;22:476–493.
    1. Tamburini M, Gangeri L, Brunelli C, Beltrami P, Boeri C, C. Borreanim, Fusco Karmann M, Greco G, Miccinesi L, Trimigno Murru & P. Assessment of hospitalized cancer patients' needs by the Needs Evaluation Questionnaire. Annals of Oncology. 2000;11:31–37. doi: 10.1023/A:1008396930832.
    1. Coyle N, Goldstein L, Passik S, Fishman B, Portenoy R. Development and validation of a patient needs assessment tool (PNAT) for oncology clinicians. Cancer Nursing. 1996;19:81–92. doi: 10.1097/00002820-199604000-00001.
    1. Derdiarian AK. Informational needs of recently diagnosed cancer patients. Nurs Res. 1986;35:276–281.
    1. Mesters I, Borne van den B, Boer MD, Pruyn J. Measuring information needs among cancer patients. Patient Education and Counseling. 2001;43:253–262. doi: 10.1016/S0738-3991(00)00166-X.
    1. Boberg EW, Gustafson DH, Hawkins RP, Offord KP, Koch C, Wen K, Kreutz K, Salner A. Assessing the unmet information, support and care delivery needs of men with prostate cancer. Patient Education and Counseling. 2003;49:233–242. doi: 10.1016/S0738-3991(02)00183-0.
    1. Thomas C, Morris SM, McIllmurray MB, Soothill K, Francis B, Harman JC. The psychosocial needs of cancer patients and their main carers. Lancaster University, Institute for Health Research; 2001.
    1. Galloway S, Graydon J, Harrison D, Evans-Boyden B, Palmer-Wickham S, Burlein-Hall S, Rich-van der Bij L, West P, Blair A. Informational needs of women with a recent diagnosis of breast cancer: development and initial testing of a tool. Journal of Advanced Nursing. 1997;25:1175–1183. doi: 10.1046/j.1365-2648.1997.19970251175.x.
    1. Templeton H, Dphil CM. Adaptation of an instrument to measure the informational needs of men with prostate cancer. Journal of Advance Nursing. 2001;35:357–364. doi: 10.1046/j.1365-2648.2001.01883.x.
    1. Denger LF, Davison BJ, Sloan JA, Mueller B. Development of a scale to measure information needs in cancer care. Journal of Nursing Measurement. 1998;6:137–153. doi: 10.1046/j.1365-2834.1998.00060.x.
    1. McCarthy M, Higginson I. Clinical audit by a palliative care team. Palliative Medicine. 1991;5:215–221.
    1. Higginson IL, Wade A, McCarthy M. A comparison of four outcome measures of terminal care. In: Gilmore A and Gilmore S, editor. A safer death. London, Plenum Press; 1988. pp. 205–211.
    1. Higginson IJ, McCarthy M. Validity of the support team assessment schedule: do staffs' ratings reflect those made by patients or their families? Palliat Med. 1993;8:219–228.
    1. Higginson IJ, Wade AM, McCarthy M. Effectiveness of two palliative support teams. Journal of Public Health Medicine. 1992;14:50–56.
    1. Ellershaw JE, Peat SJ, Boys LC. Assessing the effectiveness of a hospital palliative care team. Palliative Medicine. 1995;9:145–152.
    1. Emanuel LL, Alpert HR, Baldwin DC, Emanuel EJ. What terminally ill patients care about: toward a validated construct of patients' perspectives. Journal of Palliative Medicine. 2000;3:419–431.
    1. Emanuel EJ, Emanuel LL. The promise of a good death. Lancet. 1998;351 Suppl 2:S21–S29.
    1. Kristjanson LJ, Atwood J, L.F. Denger. Validity and Reliability of the Family Inventory of Needs (FIN): Measuring the Care Needs of Families of Advanced Cancer Patients. Journal of Nursing Measurement. 1995;3:109–126.
    1. Kilpatrick MG, Kristjanson LJ, Tataryn D. Measuring the information needs of husbands of women with breast cancer: validity and reliability of the Family of Inventory of Needs--Husbands. Oncol Nurs Forum. 1998;25:1347–1351.
    1. Kilpatrick MG, Kristjanson LJ, Tataryn DJ, Fraser VH. Information needs of husbands of women with breast cancer. Oncology Nursing Forum. 1998;25:1565–1601.
    1. Kristjanson LJ. Validity and reliability testing of the FAMCARE scale: Measure Family Satisfaction with Advance Cancer Care. Social Science Medicine. 1993;36:693–701. doi: 10.1016/0277-9536(93)90066-D.
    1. Wingate AL, Lackey NR. A description of the needs of noninstitutionalized cancer patients and their primary caregivers. Cancer Nursing. 1989;12:216–225.
    1. Hileman JW, Lackey NR. Self-identified needs of patients with cancer at home and their home caregivers: a descriptive study. Oncology Nursing Forum. 1990;17:907–913.
    1. Hileman JW, Lackey NR, Hassanein RS. Identifying the needs of home caregivers of patients with cancer. Oncol Nurs Forum. 1992;19:771–777.
    1. Harrington V, Lackey NR, Gates MF. Needs of caregivers of clinic and hospice cancer patients. Cancer Nursing. 1996;19:118–125. doi: 10.1097/00002820-199604000-00006.
    1. Dawson NJ. Need satisfaction in terminal care setting. Social Science Medicine. 1991;32:83–87. doi: 10.1016/0277-9536(91)90131-U.
    1. Chalmers K, Thomson K. Coming to terms with the risk of breast cancer: perceptions of women with primary relatives with breast cancer. Qualitative Health Research. 1996;6:256–282.
    1. Chalmers KI, Luker KA, Leinster SJ, Elis I, Booth K. Information and support needs of women with primary relatives with breast cancer: development of the Information and Support Needs Questionnaire. Journal of Advance Nursing. 2001;35:497–507. doi: 10.1046/j.1365-2648.2001.01866.x.
    1. Cronbach LJ. Coefficient alpha and the internal structure of tests. Psychometrika. 1951;16:297–333.
    1. Evan NJ. Needs assessment methodology: a comparison of results. Journal of College Student Personnel. 1985;26:107–114.
    1. Title CR, Hill RJ. Attitude measurement and prediction of behavioral: An evaluation of conditions and measurement techniques. Sociometry. 1967;30:199–213.
    1. Harris LE, Weinberger M, Tierney WM. Assessing inner-city patients' hospital experiences: a controlled trial of telephone interviews versus mailed surveys. Medical Care. 1997;35:70–76. doi: 10.1097/00005650-199701000-00006.
    1. McHorney CA, Kosinski M, Ware JE Jr. Comparison of the costs and quality of norms for the SF-36 health survey collected by mail versus telephone interview: results from a national survey. Medical Care. 1994;32:551–567.
    1. Degner LF, Davison BJ, Sloan JA, Mueller B. Development of a scale to measure information needs in cancer care. Journal of Nursing Measurement. 1998;6:137–153. doi: 10.1046/j.1365-2834.1998.00060.x.
    1. Newell S, Sanson-Fisher RW, Stewart J. Are touchscreen computer surveys acceptable to medical oncology patients? Journal of Psychosocial Oncology. 1997;15:37–46.

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