|
Advertisement |
|
|
||
 |
|
|||||
|
|||||
|
 |
||||||
|
||||||
|
||||||
|
Journal of Clinical Oncology, Vol 25, No 18 (June 20), 2007: pp. 2560-2566 © 2007 American Society of Clinical Oncology. DOI: 10.1200/JCO.2006.09.8046 Age, Health, and Education Determine Supportive Care Needs of Men Younger Than 70 Years With Prostate Cancer
From the Cancer Epidemiology Research Unit, Cancer Council New South Wales; Centre for Health Economics, Research & Evaluation; Cancer Therapy Centre, Liverpool Health Service; Sydney Cancer Centre and School of Public Health, University of Sydney, Sydney, Australia; and the Institute of Population Health, Ottawa, Canada Address reprint requests to David P. Smith, Cancer Epidemiology Research Unit, Cancer Council New South Wales, PO Box 572, Woolloomooloo, New South Wales 1340, Australia; e-mail: dsmith{at}nswcc.org.au
Purpose It is important to meet the supportive care needs of cancer patients to ensure their satisfaction with their care. A population-wide sample of men younger than 70 years and newly diagnosed with prostate cancer was surveyed to determine their unmet needs in five domains and the factors predicting them. Patients and Methods Eligible men were younger than 70 years and residents in New South Wales, Australia, with newly diagnosed histopathologically confirmed prostate cancer. Sixty-seven percent of eligible men diagnosed between October 2000 and October 2001 participated. Demographic, treatment, and self-reported health data were collected. Information on cancer stage, grade, and prostate-specific antigen was obtained from medical records. Logistic regression analyses determined patient and treatment variables that predicted higher unmet needs. Results More than half (54%) of men with prostate cancer expressed some level of unmet psychological need, and 47% expressed unmet sexuality needs. Nearly one fourth expressed a moderate or high level of unmet need with respect to changes in sexuality. Sexuality needs were independently predicted by being younger, having had a secondary school education only, having had surgery, and being married, living as married, or divorced. Uncertainty about the future was also an important area of unmet need. Conclusion Attention should be given to sexual and psychological needs in the early months after diagnosis or treatment of prostate cancer, particularly in younger men, those with less education, and those having surgery. Research into better ways of meeting these needs will enable us to meet them with as much rigor as we meet clinical treatment needs.
Some 680,000 men worldwide were diagnosed with prostate cancer in 2002, which was second only to lung cancer (965,000 diagnosed) as the most common cancer in men.1 Incidence increased dramatically in many developed countries during the 1980s and 1990s, and survival increased in parallel.2,3 Whatever the reasons for these trends, many more men are now being treated for early-stage prostate cancer, and most treatments have adverse effects that affect quality of life.4 However, little is known about the supportive care needs of men with prostate cancer. Recent research has suggested that meeting the supportive care needs of people with any type of cancer is an important determinant of their satisfaction with care and possibly their quality of life.5 Studies of men with prostate cancer have identified deficiencies in information and emotional support, and a particular need for improved support with sexuality and psychological issues.6,7 These studies were small and performed in homogeneous patient groups from specialist centers or support groups. This study describes the supportive care needs of a large, population-based sample of men younger than 70 years with recently diagnosed prostate cancer. We studied men younger than 70 years because radical treatment generally is not offered to men in Australia with less than 10 years life expectancy.8 We also show which patient and treatment variables predict greater need.
We surveyed unmet supportive care needs up to 12 months after diagnosis of prostate cancer in a consecutive sample of men, younger than 70 years, newly added to the New South Wales (NSW) Central Cancer Registry with prostate cancer. Consent was obtained from physicians managing the men's care and from the men themselves. Of 107 physicians approached, seven refused to include any of their 161 patients, whereas an additional 56 physicians refused access to 218 specific patients under their care, giving a total of 379 of registered men excluded due to physician preference. Men who could not complete a 30-minute interview in English (n = 39) were excluded (an interview was required for another aspect of the study). Participants were sent the Supportive Care Needs Survey9,10 to complete and return by mail. Nonresponders were followed up with a phone call. Clinical data were collected from physicians’ own clinical notes for all men who consented to it (96%); a standard, one-page data abstraction form was completed by the physician, a member of the physician's staff, or a trained field officer. The Cancer Council NSW Human Research Ethics Committee approved the study. A total of 1,458 men diagnosed with prostate cancer between October 2000 and October 2001 and for whom physician consent was obtained were identified as eligible for this study. A total of 1,067 men consented to the study, and 978 completed and returned the survey, providing an overall participation rate of 67%. We used the short-form version of the Supportive Care Needs Survey.11 It contained 32 questions covering five domains of need: psychological (eight items), health system and information (12 items), physical and daily living (three items), patient care and support (six items), and sexuality (three items). The survey asked, "In the last month, what was your level of need as a result of having prostate cancer for help with..." each of 32 items: for example, "feelings of sadness," "more choice about which cancer specialists you see," and "changes in sexual feelings." The response options were not applicable ("This was not a problem for me as a result of having cancer"); satisfied ("I did need help with this, but my need for help was satisfied at the time"); low need ("This caused me little concern or discomfort. I had little need for additional help"); moderate need ("This caused me some concern or discomfort. I had some need for additional help"); and high need ("This item caused me a lot of concern or discomfort. I had a strong need for additional help"). The first two response options were grouped as "no unmet need," and the last three options were grouped as "some unmet need" for analysis. For each of the five domains, each man was given a score of 0 if he had no needs on all items or 1 if he had some need on any item according to the scoring instructions of the Supportive Care Needs Survey.11 The data were analyzed using a logistic regression procedure in SPSS (SPSS Inc, Chicago, IL) in which determinants of risk of some unmet need were assessed with reference to no unmet need. Known or potential risk factors identified in previous studies of unmet needs6,7,10,12 were included in the model as covariates. These were age, country of birth, marital status, accessibility of residence, private health insurance status, income, education, prostate-specific antigen level at diagnosis, stage at diagnosis, Gleason score, type of treatment, months since diagnosis, and self-reported general health at diagnosis. The last was measured with a single self-report item from the Medical Outcomes Study (MOS) SF-36: "In general would you say your health in four weeks before diagnosis was: excellent, very good, good, fair, poor?" We included interactions between the main effects of age group and health status, and age group and education in models for each of the domains.
Study Participants Men were surveyed at a median of 119 days from diagnosis and, for those treated, a median of 81 days since first treatment. The median age was 62 years (range, 37 to 69 years). Forty-six percent of men had surgery for prostate cancer before completing the survey; 81% of the 91% with known stage had early-stage (T1 or T2) disease. Respondents were compared with all men younger than 70 years and diagnosed with prostate cancer in NSW in 2001 on items of data collected routinely by the Cancer Registry, and with men age 45 to 69 years in the general NSW population from the 2001 population census (Table 1). The surveyed sample was somewhat more likely to have been born in Australia than all men with prostate cancer, a little poorer, and a little less educated, and appreciably more likely to be married or living as married than all men 45 to 69 years of age.
Overall Level of Need Seventy-four percent of the 978 men had some unmet need when surveyed. This proportion varied among domains of need: the highest proportions were in the psychological (54%) and sexuality domains (47%), and the lowest proportions were in the patient care and support domain (29%; Fig 1). Only 5% of men said that none of the 32 items were applicable to them, reflecting the relevance of this questionnaire for this population. An additional 21% reported that their needs in all of the 32 items surveyed had been satisfied, and 55% expressed unmet needs of any degree in five or fewer items.
Items of No Unmet Need There were eight items on which more than 85% of men had no unmet need by the time of the survey. Four of these were from the 12-item health system and information domain, and greatest satisfaction was expressed with "choice about which hospital you attend" (Table 2).
Items of Moderate and High Unmet Need Three of the 10 most frequently reported items of unmet need were in the sexual domain, three were in the psychological domain, and two each were in the physical and daily living domain and the health system and information domain (Table 3).
Men ranked the three items relating to sexuality (changes in sexual feelings, changes in relationships, and information on relationships) as the areas in which they had most unmet need (Table 3); 21% to 25% of men stated that they had moderate to high unmet need in these areas. A total of 47% of men reported some need in the three-item sexuality domain; of those who did not, 28% indicated their need had been satisfied, and 24% considered the questions inapplicable (Fig 1). The other item for which more than 20% of men reported a moderate to high need was "uncertainty about the future" (Table 3). Seventy-six percent of men younger than age 50 years and 54% of men reporting poor health stated they had unmet needs for this item.
Predictors of Unmet Need
Need was significantly greater in younger men in all domains except physical and daily living. The strongest gradient of need with age was in the psychological domain, with men age younger than 50 years being some five times more likely (odds ratio, 5.87; 95% CI, 1.97 to 17.51) to have unmet need than men age 65 to 69 years. With the exception of physical and daily living, need was consistently least in men with education up to the end of secondary school (odds ratio, 0.58 to 0.67) relative to men with university or college education, and greatest in those with education only to the end of primary school. Income was a significant predictor of psychological need, with greatest need generally in those with lower incomes (Table 4). Health status significantly and independently predicted all except sexual needs. As would be expected, need was greatest in those with poor health; the gradients in odds ratios of unmet need were up to five-fold between best and poorest health groups. Having had surgery rather than other or no treatment significantly predicted unmet need in the physical and daily living, patient care, and sexuality domains. Interestingly, none of the directly cancer-related variables (prostate-specific antigen at diagnosis, stage at diagnosis, Gleason score, type of treatment, or months since diagnosis) were related independently to unmet need. Data were not available to determine whether men had progression of or recurrent disease by the time of the survey. However, given that the mean time between diagnosis and the survey was less than 4 months, few men would have experienced a worsening in their original prognosis. Similarly, variables that may directly reflect access to health services, such as country of birth, accessibility of residence (proximity to care facilities) and private health insurance were not independent predicators of unmet need in any domain. We tested the sensitivity of our results to our choice of cut point for dichotomizing the outcome variable (some need v no need) by assessing risk of moderate or high need with reference to low or no need. The trends for each item within each domain remained similar to the results presented in Table 4, but the 95% CIs generally widened slightly. With the exceptions of the associations of age and having surgery with patient care need, and of support and income with psychological need, all P values reported in Table 4 as less than .05 remained less than .05. We also investigated whether clustering of patients within physicians accounted for any of the differences observed in the domains. One hundred physicians provided the principal care for the 978 study participants (range, one to 60 patients per physician). There was no association between physicians’ patient volume in the study and any of the five domains of need. Logistic regression modeling was repeated using generalized estimating equations with an exchangeable correlation matrix to identify independent predictors of any needs in each domain, after accounting for clustering of patients within surgeons. The intracluster correlations ranged from 0.003 for sexuality needs to 0.02 for daily living needs; these very low values indicate that clustering had little effect on the patterns observed.
We surveyed patient needs in the period between 3 and 12 months after diagnosis. Most men had made treatment choices at this stage. Those who had undergone surgery or radiation therapy were an average of 2.5 months post-treatment. More than half (54%) of men with prostate cancer expressed some level of unmet psychological need, and 47% had some unmet sexuality needs; 26% reported no need across any items, and another 55% reported unmet need in five or fewer of the 32 items. That this is a large and population-wide study are major strengths. Other quantitative studies have surveyed needs in smaller and more highly selected patient samples, and later in the post-treatment stages.7,12 The main weakness of our study is the moderate participation rate (67% of all eligible NSW men diagnosed during the study period), which somewhat dilutes the strength of its base in a whole population. However, a comparison of key characteristics of the participating population with data from the NSW Central Cancer Registry and the 2001 Census (Table 1) shows evidence of only modest selection bias. This was most important, perhaps, in the deficits in those born outside Australia, those with high incomes and high educational levels, and those divorced or separated. The bias with respect to place of birth was at least partly due to exclusion, for practical purposes, of men who could not complete an interview in English. A lack of sensitivity of the Supportive Care Needs Survey to needs specific to particular types of cancer may also be a weakness of this study. Important health-related quality-of-life needs, common in men treated for prostate cancer (including urinary, bowel, energy, and hormonal issues), are not captured by the survey. Two recently developed tools for measuring needs specifically in prostate cancer patients have reported higher information needs than we observed.13,14 In a survey using the longer form of the Supportive Care Needs Survey, female patients with a number of different cancers were more likely than male cancer patients to report unmet psychological, physical and daily living, patient care, and support needs; but men reported more unmet sexuality needs.10 Expression of fewer unmet needs in domains other than sexuality may be a result of having fewer needs, less tendency to recognize need, or a more stoic or self-sufficient approach to coping with psychological and support issues in men after a cancer diagnosis.15 Forty-seven percent of men in this study reported some unmet sexuality need. This is consistent with other studies of men attending a nonsurgical urologic oncology clinic in the United Kingdom,12 prostate cancer support groups in Australia,7 and in a hospital-based study in the United States.6 That younger men reported higher unmet needs across four of the five domains is also consistent with previous studies showing that the psychological impact of cancer is greater in younger people.10,14 Inference from this study is limited to the first 12 months after diagnosis. Little has been reported on the unmet needs of longer-term prostate cancer survivors. Steginga et al16 found that most men with prostate cancer had psychologically adjusted 12 months after diagnosis, but that 42% experienced ongoing decisional uncertainty about their treatment and the pros and cons of their decisions. On the basis of our results, unmet need is likely to be greater in those who experience long-term sexual dysfunction, disease recurrence, or disease progression. Studies in the United States17 and Australia18 have highlighted socioeconomic status inequity in prostate cancer mortality and survival. This is the first study to identify more immediate inequity in the extent to which the information and supportive care needs of poorer and lesser-educated men with prostate cancer have been met. Unmet psychological need was greatest in those with the lowest income, and need in all domains except physical and daily living was greatest in those with primary school education only. Oddly, need was least in the middle education group rather than in the highest; perhaps higher education leads to greater expectations of the health system. Although a lack of financial and educational resources may contribute to these inequalities, their determinants are probably complex and require additional research if they are to be understood and addressed. Our study has documented the areas in which current care in NSW is failing to meet patients’ needs. Given the high probability of long-term survival in most men diagnosed with prostate cancer, particularly younger men with localized disease, better strategies to address lingering psychological issues such as uncertainty about the future are of high priority. This is likely to become increasingly important over time, as early detection and treatment practices continue to target younger men.19 Improved access to the spectrum of supportive care services including nursing specialists, psychological counseling, peer support groups, and consumer information should be considered. There is some evidence that programs designed to reduce unmet supportive care needs can improve quality of life for cancer patients. A randomized study of oncology nurse–directed interventions showed reduced fatigue, anxiety, and depression.20 Advanced practice nurse–led interventions,21 video-based,22 telephone-based,23 and computer-assisted24 psychoeducational interventions22 and group-based interventions25,26 have been shown to improve aspects of patients’ quality of life. These various options have not been subjected to direct comparison of their efficacy. It may be that different types of need and the needs of different socioeconomic subgroups are best met in different ways. The most effective way of providing support for the unmet needs of men with prostate cancer has not been determined. Interventions that address psychological and sexual needs, particularly in younger men, men of lower socioeconomic status, and in the case of sexuality, men who have had surgery, would be of greatest importance. These types of support are likely to improve patients’ satisfaction with care, their ability to make informed decisions regarding practical aspects of life, and possibly their quality of life.
The author(s) indicated no potential conflicts of interest.
Conception and design: David P. Smith, Madeleine T. King, Jeanette Ward, Martin Berry, Bruce K. Armstrong Financial support: David P. Smith, Jeanette Ward, Martin Berry, Bruce K. Armstrong Administrative support: David P. Smith, Rajah Supramaniam Provision of study materials or patients: David P. Smith, Jeanette Ward, Martin Berry, Bruce K. Armstrong Collection and assembly of data: David P. Smith, Rajah Supramaniam, Madeleine T. King Data analysis and interpretation: David P. Smith, Rajah Supramaniam, Madeleine T. King, Martin Berry, Bruce K. Armstrong Manuscript writing: David P. Smith, Madeleine T. King, Jeanette Ward, Martin Berry, Bruce K. Armstrong Final approval of manuscript: David P. Smith, Rajah Supramaniam, Madeleine T. King, Jeanette Ward, Martin Berry, Bruce K. Armstrong
We thank all members of the New South Wales Prostate Cancer Care and Outcomes Study Advisory Group, Professional Reference Group, and Bruce Tabor for statistical advice. The New South Wales Central Cancer Registry assisted in the recruitment of study participants.
Supported by a grant from the Australian Department of Veterans Affairs. B.A. was supported by a grant from the University of Sydney Medical Foundation Program. Presented in part in poster format at the XVII International Epidemiology Association World Congress of Epidemiology, August 21-25, 2005, Bangkok, Thailand. Authors’ disclosures of potential conflicts of interest and author contributions are found at the end of this article.
1. Ferlay J, Bray F, Pisani P, et al: GLOBOCAN 2002: Cancer Incidence, Mortality and Prevalence Worldwide. Lyon, France, IARC Press, 2004 2. Ries LA, Eisner MP, Kosary CL, et al: SEER Cancer Statistics Review, 1975-2002. Bethesda, MD, National Cancer Institute, 2005 3. Coleman MP, Gatta G, Verdecchia A, et al: EUROCARE-3 summary: Cancer survival in Europe at the end of the 20th century. Ann Oncol 14:v128-v149, 2003 (suppl 5)[CrossRef][Medline] 4. Potosky AL, Davis WW, Hoffman RM, et al: Five-year outcomes after prostatectomy or radiotherapy for prostate cancer: The prostate cancer outcomes study. J Natl Cancer Inst 96:1358-1367, 2004 5. Walker MS, Ristvedt SL, Haughey BH: Patient care in multidisciplinary cancer clinics: Does attention to psychosocial needs predict patient satisfaction? Psychooncology 12:291-300, 2003[CrossRef][Medline] 6. Boberg EW, Gustafson DH, Hawkins RP, et al: Assessing the unmet information, support and care delivery needs of men with prostate cancer. Patient Educ Couns 49:233-242, 2003[CrossRef][Medline] 7. Steginga SK, Occhipinti S, Dunn J, et al: The supportive care needs of men with prostate cancer (2000). Psychooncology 10:66-75, 2001[CrossRef][Medline] 8. Australian Cancer Network Working Party and National Health and Medical Research Council (NHMRC): Clinical Practice Guidelines: Evidence-based information and recommendations of localised prostate cancer. Canberra, Australia, Commonwealth of Australia, AusInfo Government Info Bookshops, 2002 9. Bonevski B, Sanson-Fisher R, Girgis A, et al: Evaluation of an instrument to assess the needs of patients with cancer: Supportive Care Review Group. Cancer 88:217-225, 2000[CrossRef][Medline] 10. Sanson-Fisher R, Girgis A, Boyes A, et al: The unmet supportive care needs of patients with cancer: Supportive Care Review Group. Cancer 88:226-237, 2000[CrossRef][Medline] 11. McElduff P, Boyes A, Zucca A, et al: Supportive Care Needs Survey: A guide to administration, scoring and analysis. Newcastle, Australia, United Kingdom, The Centre for Health Research and Psycho-Oncology, 2004 12. Lintz K, Moynihan C, Steginga S, et al: Prostate cancer patients’ support and psychological care needs: Survey from a non-surgical oncology clinic. Psychooncology 12:769-783, 2003[CrossRef][Medline] 13. Duke JM, Treloar CJ, Byles JE: Evaluation of a revised instrument to assess the needs of men diagnosed with prostate cancer. Support Care Cancer 13:895-903, 2005[CrossRef][Medline] 14. Dale J, Jatsch W, Hughes N, et al.: Information needs and prostate cancer: The development of a systematic means of identification. BJU Int 94:63-69, 2004[CrossRef][Medline] 15. Kiss A, Meryn S: Effect of sex and gender on psychosocial aspects of prostate and breast cancer. BMJ 323:1055-1058, 2001 16. Steginga SK, Occhipinti S, Gardiner RA, et al: Prospective study of men's psychological and decision-related adjustment after treatment for localized prostate cancer. Urology 63:751-756, 2004[CrossRef][Medline] 17. Tewari A, Horninger W, Pelzer AE, et al: Factors contributing to the racial differences in prostate cancer mortality. BJU Int 96:1247-1252, 2005[CrossRef][Medline] 18. Hall SE, Holman CD, Wisniewski ZS, et al: Prostate cancer: Socio-economic, geographical and private-health insurance effects on care and survival. BJU Int 95:51-58, 2005[CrossRef][Medline] 19. Carter HB, Ferrucci L, Kettermann A, et al: Detection of life-threatening prostate cancer with prostate-specific antigen velocity during a window of curability. J Natl Cancer Inst 98:1521-1527, 2006 20. Rawl SM, Given BA, Given CW, et al: Intervention to improve psychological functioning for newly diagnosed patients with cancer. Oncol Nurs Forum 29:967-975, 2002[Medline] 21. Ritz LJ, Nissen MJ, Swenson KK, et al: Effects of advanced nursing care on quality of life and cost outcomes of women diagnosed with breast cancer. Oncol Nurs Forum 27:923-932, 2000[Medline] 22. Stanton AL, Ganz PA, Kwan L, et al: Outcomes from the Moving Beyond Cancer psychoeducational, randomized, controlled trial with breast cancer patients. J Clin Oncol 23:6009-6018, 2005 23. Canada AL, Neese LE, Sui D, et al: Pilot intervention to enhance sexual rehabilitation for couples after treatment for localized prostate carcinoma. Cancer 104:2689-2700, 2005[CrossRef][Medline] 24. Giesler RB, Given B, Given CW, et al: Improving the quality of life of patients with prostate carcinoma: A randomized trial testing the efficacy of a nurse-driven intervention. Cancer 104:752-762, 2005[CrossRef][Medline] 25. Lepore SJ, Helgeson VS, Eton DT, et al: Improving quality of life in men with prostate cancer: A randomized controlled trial of group education interventions. Health Psychol 22:443-452, 2003[CrossRef][Medline] 26. Penedo FJ, Molton I, Dahn JR, et al: A randomized clinical trial of group-based cognitive-behavioral stress management in localized prostate cancer: Development of stress management skills improves quality of life and benefit finding. Ann Behav Med 31:261-270, 2006[CrossRef][Medline] Submitted November 7, 2006; accepted April 4, 2007.
|
|||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
|
|||||||||||
|
|||||||||||
|
|
Copyright © 2007 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
|
TOP
ABSTRACT
INTRODUCTION
