The unmet supportive care needs of patients with cancer

Authors

  • Rob Sanson-Fisher Ph.D.,

  • Afaf Girgis Ph.D.,

  • Allison Boyes M.P.H.,

  • Billie Bonevski Ph.D.,

  • Louise Burton M.Mgt.(Health),

  • Peter Cook B.E.,

  • Supportive Care Review Group

    Corresponding author
    • NSW Cancer Council Cancer Education Research Program, Locked Bag 10, Wallsend NSW 2287, Australia
    Search for more papers by this author
    • This research was undertaken by the New South Wales (NSW) Cancer Council Supportive Care Review Group and the Cancer Education Research Program, directed by Professor Rob Sanson-Fisher, Ph.D., until to November 1997. The Supportive Care Review Group includes Stephen Ackland, M.B.B.S., Robin Baker, Dip.Soc.Studs., Martin Berry, M.B.B.S., James Biggs, Ph.D., Jim Bishop, M.D., Les Bokey, M.S., Alison Burnard, R.N., Cert.M., Philip Clingan, M.B.B.S., Patrick Cregan, M.B.B.S., Stewart Dunn, Ph.D., Michael Friedlander, Ph.D., Kerry Goulston, M.D., Neville Hacker, M.D., John Kearsley, Ph.D., Allan Langlands, M.B.Ch.B., John Levi, M.D., Eugene Moylan, M.B.B.S., John Stewart, M.B.B.S., and Martin Tattersall, M.D. The views expressed are not necessarily those of the Cancer Council.


Abstract

BACKGROUND

The aim of this study was to determine the prevalence and predictors of the perceived unmet needs of cancer patients undergoing treatment for their disease at public treatment centers.

METHODS

A total of 1492 consecutive patients attending the surgical, radiation, or medical oncology departments of 9 major public cancer treatment centers in New South Wales, Australia, were asked to participate. Of the 1370 eligible patients, 1354 (99%) consented to participate and 888 (65%) returned completed surveys. Eligible consenting patients were given a Supportive Care Needs Survey to complete at home and return by mail within 7 days.

RESULTS

Patients' perceived needs were assessed across the following five areas: psychologic, health system and information, physical and daily living, patient care and support, and sexuality. Patients' perceived needs were highest in the psychologic, health system and information, and physical and daily living domains. Logistic regression modeling revealed subgroups of patients with different types of needs. The significant predictors of reporting some unmet need for help varied according to the domain examined.

CONCLUSIONS

This statewide study shows that cancer patients experience high levels of unmet needs across the range of domains examined. The study provides information that may be valuable in identifying areas where interventions could be tested and evaluated in an attempt to address the unmet needs of people living with cancer. [See related article on pages 217–25, this issue.] Cancer 2000;88:225–36. © 2000 American Cancer Society.

Cancer is a major cause of morbidity and mortality throughout the world, with 9 million people newly diagnosed each year and 5 million people dying from the disease.1 In the United States, approximately 1.2 million new cancers are diagnosed annually and one-fifth of all deaths in the U.S. are from cancer.2 In the United Kingdom, approximately 273,000 new cancer cases are diagnosed each year and 160,000 people die from it.3 In Australia, cancer is the leading cause of death, accounting for approximately one-quarter of all deaths.4 Approximately 55,000 cases of cancer are diagnosed each year, the most common being breast, prostate, colorectal, and lung carcinoma and melanoma. Due in part to the focus on early detection and improved clinical management of cancer, 5-year survival rates indicate that more people are now living with cancer, and for longer periods of time.1, 5

Morbidity in cancer patients has been estimated using a number of different strategies, including the assessment of quality of life, satisfaction with care, and, more recently, patients' needs. Quality-of-life research has indicated that the diagnosis and subsequent treatment of cancer impairs patients' work and social activities, management of the home, family and other relationships, sleep patterns, and sexual activity.6–9 In addition, studies exploring the psychologic sequelae of cancer have suggested that cancer patients experience clinically significant levels of anxiety and depression.7, 9–15

In contrast, research assessing satisfaction with care has shown that although a majority of cancer patients report being satisfied with clinical aspects of their care, they are less satisfied with the information and support they receive.16 In particular, dissatisfaction has been expressed in relation to the information received about the disease, treatment, side effects and their control, and the support patients and their family receive after returning home.17–19

Although assessments of quality of life and satisfaction with care yield lists of concerns or dissatisfactions, they do not indicate which of those issues patients feel that they need help with. In contrast, needs assessments directly assess and identify specific issues of need for patients, as well as the perceived magnitude of those needs. In this context, “needs” can be defined as the requirement of some action or resource that is necessary, desirable, or useful to attain optimal well-being.20 Needs assessment enables individuals and subgroups of patients with higher levels of need to be identified and targeted with appropriate early interventions, and also makes it possible for aspects of health services that need improvement to be identified and prioritized.21

Research on the needs of patients with cancer has identified high levels of unmet need and a difference in the types of unmet needs depending on the cancer population studied. For example, high levels of unmet need in the provision of information have been reported in studies with mixed cancer patients,22, 23 breast carcinoma patients,24, 25 and melanoma patients.26 Other studies of cancer patients undergoing treatment for cancer have reported high levels of physical/daily living needs.27–31

Such studies have provided important information on the needs of cancer patients. A number of these studies23, 26, 27 have used a multidimensional needs assessment instrument with demonstrated validity and reliability, the Cancer Needs Questionnaire,23 enabling comparison of the results of different studies. However, the needs research studies published to date have a number of methodologic limitations that may influence the results, including conceptual uncertainties of defining “needs” as “problems,” focusing on patients with a specific type or stage of cancer or receiving a particular treatment modality, focusing on specific domains of need rather than a range of patient needs, and recruiting study samples from only one treatment center.

The aim of the current study was to overcome some of the limitations of previous research by describing the prevalence and predictors of unmet needs among a large sample of cancer patients undergoing different types of treatment for their cancer at different treatment centers. Specifically, the study aimed to 1) measure the prevalence of unmet needs among people receiving surgery, chemotherapy, or radiation therapy for cancer; and 2) examine the patients' sociodemographic, disease, and treatment variables predictive of the prevalence of different types of needs.

METHODS

Sample

Treatment centers

Nine major public cancer treatment centers in one Australian state participated. All treatment centers provided surgical and medical oncology treatment facilities and six provided radiation treatment facilities. These nine treatment centers collectively accounted for approximately 20% of all surgical oncology treatment in the state of New South Wales (NSW) and almost one-third of all surgical oncology treatment performed in NSW public hospitals. One-third of all inpatient medical oncology services in NSW and almost one-half of all inpatient medical oncology treatment in NSW public hospitals were provided by the participating treatment centers. The six treatment centers that provided radiation oncology facilities collectively accounted for approximately 55% of all outpatient radiation oncology in NSW and 72% of all outpatient radiation oncology treatment provided in NSW public hospitals. Four of the treatment centers provided medical oncology outreach clinics and three provided radiation oncology outreach clinics to rural and urban hospitals predominantly in NSW.32

Patients

Respondents consisted of people diagnosed with cancer who were in consecutive attendance at either the surgical oncology department or medical or radiation oncology outpatient clinics at the participating treatment centers during the survey period. Patient eligibility criteria included being between ages 18 and 85 years, having been diagnosed with cancer at least 3 months prior to the study, being able to speak and write English, and being physically and mentally willing and able to complete a written questionnaire. If patients were receiving more than one type of treatment, they were asked to complete the survey only once.

Procedure

After arriving at the clinic waiting room, each patient was introduced to a trained interviewer by a nurse and verbally informed about the study. After establishing the patient's eligibility to participate, the interviewer provided written information about the survey and asked for the patient's written consent to complete the survey. All eligible, consenting patients were given a Supportive Care Needs Survey and a reply-paid envelope. Patients were asked to complete the questionnaire during the following 48-hour period and return it to the researchers by mail within 7 days. Patients who did not return the questionnaire within 10 days received a reminder telephone call from the interviewer. The study received approval from the NSW Cancer Council Human Research Ethics Committee and the ethics committees of participating hospitals.

Measures

The Supportive Care Needs Survey (SCNS), a modified version of the Cancer Needs Questionnaire (CNQ),23 was used. The purpose of the SCNS instrument was to provide a direct and comprehensive assessment of the multidimensional impact of cancer on the lives of cancer patients. The development and assessment of the survey's psychometric properties, including a list of survey items, are fully described in another publication.33 In brief, the CNQ was used as the initial pool of items. The survey content was reviewed by a team of clinical experts and pilot-tested with 200 patients with cancer for clarity, comprehensiveness, and acceptability. Redundant items were removed, new items were added, and complex language was simplified. Principal components factor analysis identified five factors with eigenvalues greater than 1, which together accounted for more than 64% of the total variance (psychologic, health system and information, physical and daily living, patient care and support, and sexuality needs). Internal reliability coefficients (Cronbach alpha) of all 5 factors were substantial, ranging from 0.87 to 0.97. Tests of reading ease indicated that the self-administered survey, which takes approximately 20 minutes to complete, could be understood by people with minimal reading ability (at the fourth to fifth grade level). The SCNS contained 71 items divided into3 main sections:

  • 1Needs items: The first 59 needs items asked patients to indicate their level of need for help with issues divided into 5 main factors; 1) psychologic—needs related to emotions and coping; 2) health system and information—needs related to the treatment center and obtaining information about the disease, diagnosis, treatment, and follow-up; 3) physical and daily living—needs related to coping with physical symptoms and side effects of treatment and performing usual physical tasks and activities; 4) patient care and support—needs related to health care providers showing sensitivity to physical and emotional needs, privacy, and choice; and 5) sexuality—needs related to sexual relationships. Each item is preceded with the stem question, “In the last month, what was your level of need for help with…?” with the following response options: “No need, not applicable,” “No need, satisfied,” “Low need,” “Moderate need,” or “High need.” An additional question related specifically to the need for easy access to services and resources, such as transportation, child care, counseling services, information, relaxation classes, and financial assistance. Each item is preceded with the stem question, “What was your level of need for easy access to the following services and resources in the last month?” with the same response options as the first 59 need items.
  • 2Disease and treatment: Eight items related to the patients' disease and treatment. The following variables were assessed: when the patient was first told he or she had cancer, the primary site of the cancer, the current cancer site, whether the cancer is in remission, the type of treatment ever received, the type of treatment received in the last month, and when the patient was last admitted to hospital for treatment of the cancer. Specific information about cancer stage was not collected.
  • 3Patient background: Three items determined patients' age, gender, and marital status. Information about ethnicity was not collected.

RESULTS

Sample

Treatment centers

Of the nine participating treatment centers, patients were approached about the study in the surgical oncology department of one center, the radiation oncology departments of the six centers that provided it, and the medical oncology departments of all centers.

Patients

A total of 1492 cancer patients were approached. Of these, 122 patients were ineligible for the following reasons: 54 (4%) were too ill to participate, 3 (<1%) were younger than 18 or older than 85 years, 32 (2%) did not comprehend English, and 33 (2%) had already completed the survey. Of the 1370 eligible patients, 1354 (99%) consented to participate and 888 (65%) returned completed surveys. There were no significant differences in gender between consenters and nonconsenters.

Table 1 shows the demographic and treatment characteristics of participating patients in comparison to the NSW population of cancer patients.34 The study sample overrepresented females; breast, colon, and rectal carcinoma cases; and those ages 31–60 years. Males; prostate carcinoma, lung carcinoma, and skin cancer/melanoma cases; and those ages 71–85 years were underrepresented in the sample compared with the NSW cancer population.

Table 1. Sample Demographics and Treatment Characteristics Compared with Cancer Patients in New South Wales, Australia
CharacteristicsSurvey sample (n = 888)NSW 1994 (n = 26,186)aP value
No.%No.%
  • NSW: New South Wales, Australia.

  • a

    Coates MS, Armstrong BK. Cancer in New South Wales: incidence and mortality, 1994. Sydney: NSW Cancer Council, 1997.

  • b

    NSW data reported for age are based on the following age categories: 20–29, 30–39, 40–49, 50–59, 60–69, 70–89.

  • c

    Living as husband and wife but not married.

  • d

    %: proportion of total; respondents may indicate more than one category.

  • *

    Significant difference between study sample and NSW average.

  • **

    Comparison data not available.

Age (yrs)b
 18–3019243821.0
 31–40496104740.003*
 41–501401622158<0.001*
 51–6018821379414<0.001*
 61–70236277039271.0
 71–852562910,95042<0.001*
Gender
 Male3574214,86957<0.001*
 Female4845811,31743<0.001*
Marital status
 Married55966
 Defactoc304
 Divorced/separated789****
 Widowed9812
 Never married/single769
Primary cancer site
 Breast28032332713<0.001*
 Colon and rectum15017347313<0.001*
 Prostate809449717<0.001*
 Lung6782533100.05*
 Skin/melanoma43523659<0.001*
 Don't know14210064<0.001*
 Other21724898534<0.001*
Treatment received in last monthd
 Chemotherapy37840
 Radiotherapy31537
 Surgical removal of cancer10711****
 Immunotherapy122
 Hormone treatment586
 Bone marrow treatment6<1
 Other283

Prevalence of Needs

One of the strengths of the application of this survey is the ability to identify specific issues or areas where patients require the most help. Hence, to preserve the detail of the information collected, an overall “needs” score was not calculated. The 59 individual items of need were initially examined to assess the frequency of respondents reporting each of the response categories (no need—not applicable; no need—already satisfied; low need for help; moderate need for help; high need for help). The results revealed wide variation across the range of responses for each item. The 10 items with the highest frequency of moderate-to-high needs for help are indicated in Table 2. Of the 10 highest needs items, 5 were related to the psychologic needs domain, 3 items were related to the health system and information domain, and 2 items were related to the physical and daily living needs domain.

Table 2. Ten Highest Moderate or High Unmet Needs Reported in the Last Month across Treatment Groups and Centers
RankItem% of sample reporting a moderate/high needDomain
1Fears about the cancer spreading40Psychologic
2Fears about the cancer returning39Psychologic
3Concerns about the worries of those close to you38Psychologic
4To be informed about the things you can do to help yourself get well36Health system/information
5Lack of energy and tiredness33Physical/daily living
5Not being able to do the things you used to do33Physical/daily living
7Uncertainty about the future32Psychologic
8To be informed about cancer that is under control or diminishing (i.e., remission)32Health system/information
9To be informed about your test results as soon as possible31Health system/information
10Concerns about the ability of those close to you to cope with caring for you30Psychologic

Prevalence of Needs for Services and Resources

All respondents were asked an additional question related to their perceived need for access to services and resources. As in Table 3, the 3 most frequently reported unmet moderate or high needs were easy car parking at the hospital (28%); monetary allowances for travel, treatment, and equipment expenses (19%); and access to a library of books and videos about cancer and related issues (18%).

Table 3. Moderate or High Service and Resource Needs Reported in the Last Month
Item% of sample reporting a moderate/high need
Easy car parking at the hospital or clinic28
Monetary allowance for travel, treatment, and equipment expenses19
Library of books and videos about cancer and related issues18
Brochures about services and benefits for patient with cancer17
24-hour telephone support and cancer advisory service17
Relaxation classes15
Drop-in counseling and support service14
Counseling services (e.g., counsellor, psychologist, social worker, or nurse specialist) at the hospital or clinic for your family/partner12
Home cleaning service12
Transport service to and from the hospital or clinic11
Comfortable waiting room11
Home gardening service11
Food and drink facilities in or near the clinic waiting room9
Home nursing service9
Respite care8
Child-minding at the hospital or clinic3

Predictors of Need

In order to explore whether any variables related to the patient, treatment, or health system predicted reports of needs, separate logistic regression analyses using SAS software (SAS Institute, Cary, NC) were completed for each of the five domains. The domain score, the average score for all items in the domain, was only calculated for those participants who answered all needs items within the domain. Domain scores were calculated by summing the responses to each of the needs items within each domain and dividing the total by the number of items in the domain. The domain score was then dichotomized, with a score of zero corresponding to “no need” and a score greater than zero corresponding to “some need.” Forward logistic regression was used, which begins with a model with no variables included, and as each variable is added it is tested to see if it significantly improves the model. Variables that do not significantly improve the model are removed, and another variable is added and tested. Variables removed at an earlier stage are included and tested again if the model improves due to a later variable being added.35 The following variables were included in the regression analyses: when the patient was first told that he or she had cancer; the primary site of the cancer; the current cancer site; whether the cancer is in remission; the type of treatment ever received; the type of treatment received in the last month; when the patient was last admitted to hospital for treatment of the cancer; the treatment center; and the patient's age, gender, and marital status. Those groups with the highest frequency or the most clinical relevance were selected as reference groups. The results of the regression analyses are presented in Tables 4–8.

Psychologic needs

Four variables were identified as significant predictors of reporting “some need” in this domain: whether the cancer was diminishing, age, gender, and treatment center. Participants who reported being told that their cancer had not stopped growing or was not diminishing were significantly more likely to report some need for help in the psychologic domain compared with those participants whose cancer had stopped growing or was diminishing. Compared with those ages 71–90 years, participants ages 31–50 years were significantly more likely to report a need for help, whereas those ages 18–30 or 51–70 years were as likely as those ages 71–90 years to report a need for help. Women were significantly more likely to report psychologic needs than men, and participants from three of the treatment centers (F, G, and I) were significantly more likely to report needs when compared with the reference center (E), as indicated in Table 4.

Table 4. Significant Predictors of Reporting “Some Need” in the Psychologic Domain
VariablesFrequencyEstimateSEOdds ratio (95% CI)χ2dfP value
  • SE: standard error; CI: confidence interval; df: degrees of freedom.

  • a

    Significantly different from reference group.

Remission
 No/don't know3720.740.222.10 (1.36–3.23)a8.28710.004
 Yes210
Age (yrs)
 18–30161.230.824.42 (0.68–17.07)18.26350.003
 31–40422.320.7710.21 (2.28–45.68)a
 41–501130.710.342.03 (1.05–3.94)a
 51–601370.370.281.45 (0.84–2.52)
 61–701390.340.291.41 (0.80–2.47)
 71–90135
Gender
 Female2570.490.231.63 (1.04–2.56)a11.0281<0.001
 Male325
Treatment center
 A80.830.982.30 (0.34–15.68)23.94080.002
 B460.050.411.05 (0.47–2.36)
 C1120.350.311.42 (0.77–2.62)
 D72−0.140.340.87 (0.44–1.69)
 F531.060.452.90 (1.19–7.03)a
 G461.960.627.09 (2.10–23.88)a
 H970.390.361.47 (0.72–2.99)
 I331.420.644.14 (1.19–14.43)a
 E115

Health system and information

Three variables significantly predicted reporting “some need” in this domain: whether the cancer was diminishing, age, and the type of treatment received in the last month. Participants who reported being told that their cancer had not stopped growing or was not diminishing were significantly more likely to report some need for help in the information domain compared with those participants whose cancer had stopped growing or was diminishing. Compared with those ages 71–90 years, participants ages 31–60 years were significantly more likely to report a need for help, but patients ages 18–30 and 61–70 years did not significantly differ in their reported information needs from those ages 71–90 years. With respect to treatment received in the last month, patients who had immunotherapy were significantly less likely to report information needs when compared with those who received a combination of treatments, as indicated in Table 5.

Table 5. Significant Predictors of Reporting “Some Need” in the Health System and Information Domain
VariablesFrequencyEstimateSEOdds ratio (95% CI)χ2dfP value
  • SE: standard error; CI: confidence interval; df: degrees of freedom.

  • a

    Significantly different from the reference group.

Remission
 No/don't know3920.710.192.03 (1.40–2.95)a12.0961<0.001
 Yes214
Age (yrs)
 18–30160.310.551.36 (0.46–3.98)25.0995<0.001
 31–40372.060.567.85 (2.61–23.59)a
 41–501131.060.293.20 (1.80–5.70)a
 51–601410.610.251.84 (1.12–3.02)a
 61–701560.380.241.46 (0.91–2.35)
 71–90143
Treatment received in last month
 Surgery19−0.800.470.45 (0.18–1.12)8.75350.098
 Immunotherapy1−6.311.040.00 (0.00–0.01)a
 Chemotherapy113−0.280.251.32 (0.81–2.15)
 Radiotherapy99−0.150.240.86 (0.54–1.39)
 Hormone treatment40.501.031.66 (0.22–12.40)
 Other/multiple treatments370

Physical and daily living needs

Four variables significantly predicted the reporting of “some need” in this domain: whether the cancer was diminishing, gender, the date of the last admission for treatment, and the treatment center. Participants who reported being told that their cancer had not stopped growing or was not diminishing were more likely to report some need for help in the daily living domain compared with patients whose cancer had stopped growing or was diminishing, and females were significantly more likely to report some need for help than males. With respect to the recency of their last admission for treatment, patients who were never admitted or could not remember their last admission were less likely to report information needs compared with those last admitted within the last month. Finally, participants from three of the treatment centres (C, G, and I) were significantly more likely to report needs compared with the reference center (E), as indicated in Table 6.

Table 6. Significant Predictors of Reporting “Some Need” in the Physical and Daily Living Domain
VariablesFrequencyEstimateSEOdds ratio (95% CI)χ2dfP value
  • SE: standard error; CI: confidence interval; df: degrees of freedom.

  • a

    Significantly different from reference group.

Remission
 No/don't know4150.510.191.67 (1.15–2.42)a9.43110.002
 Yes243
Gender
 Female3800.560.191.75 (1.21–2.54)a12.3511<0.001
 Male278
Last admission for treatment
 Never/can't remember83−0.850.280.43 (0.25–0.74)a15.28240.004
 >2 yrs ago26−0.660.450.52 (0.21–1.25)
 1–2 yrs ago31−0.840.430.43 (0.19–1.00)
 1–12 mos ago239−0.270.210.76 (0.50–1.16)
 Within last mo279
Treatment center
 A90.580.751.79 (0.41–7.80)31.6378<0.001
 B510.340.381.14 (0.67–2.97)
 C1210.870.292.38 (1.34–4.24)a
 D96−0.250.290.78 (0.44–1.37)
 F620.790.362.21 (0.19–4.48)
 G531.420.454.14 (1.72–9.98)a
 H1090.590.301.80 (0.01–3.23)
 I301.070.522.92 (1.04–8.15)a
 E127

Patient care and support needs

Six variables were identified as significant predictors of reporting “some need” in this domain: whether the cancer was diminishing, age, gender, the type of cancer currently being treated, when the patient was told of the cancer diagnosis, and the treatment center. Participants who reported that their cancer had not stopped growing or was not diminishing were significantly more likely to report some need for help in the patient care domain compared with patients who had been told that their cancer was in remission. Compared to those ages 71–90 years, participants ages 31–60 years were significantly more likely to report a need for help. Those ages 18–30 and 61–70 years did not differ from those ages 71–90 years in their likelihood to report patient care needs. Women were significantly more likely to report needs in this domain than men. Patients currently receiving treatment for cancer of the lung, bowel, colon, rectum, or brain were significantly more likely to report a need for help than patients receiving treatment for breast carcinoma. Patients from one of the treatment centers (I) were significantly more likely to report needs compared with patients from the reference center (E), and those from one center (D) were significantly less likely to report needs than those from the reference center, as indicated in Table 7.

Table 7. Significant Predictors of Reporting “Some Need” in the Patient Care and Support Domain
VariablesFrequencyEstimateSEOdds ratio (95% CI)χ2dfP value
  • SE: standard error; CI: confidence interval; df: degrees of freedom.

  • a

    Significantly different from reference group.

Remission
 No/don't know4310.450.181.57 (1.01–2.23)a6.26310.012
 Yes228
Age (yrs)
 18–30170.210.601.23 (0.38–3.98)21.7155<0.001
 31–40391.620.445.04 (2.13–11.94)a
 41–501231.070.292.90 (1.66–5.07)a
 51–601530.720.272.06 (1.22–3.48)a
 61–701740.360.251.43 (0.88–2.34)
 71–90153
Gender
 Female3890.820.222.27 (1.48–3.49)a13.3361<0.001
 Male270
Cancer receiving current treatment
 Don't know70.650.771.93 (0.42–8.76)22.613120.028
 Multiple sites281.080.492.95 (1.14–7.64)a
 Lung590.980.352.67 (1.35–5.29)a
 Prostate490.040.461.04 (0.43–2.55)
 Bowel/colon/rectum730.780.332.19 (1.15–4.17)a
 Melanoma80.770.862.16 (0.40–11.60)
 Skin220.930.542.54 (0.87–7.39)
 Cervical9−1.020.780.36 (0.08–1.67)
 Ovarian121.140.793.13 (0.66–14.82)
 Brain141.570.634.79 (1.40–16.42)a
 Leukemia100.860.702.36 (0.60–9.21)
 Other1840.890.272.42 (1.43–4.10)a
 Breast184
First diagnosed with cancer
 >5 yrs ago630.240.421.27 (0.55–2.90)9.35530.025
 1–5 yrs ago1700.550.371.73 (0.84–3.57)
 1–12 mos ago379−0.130.340.88 (0.45–1.71)
 Within last mo47
Treatment center
 A8−1.250.870.29 (0.05–1.57)28.0668<0.001
 B520.330.361.40 (0.70–2.81)
 C128−0.300.270.74 (0.44–1.25)
 D79−0.760.340.47 (0.24–0.91)a
 F640.430.341.54 (0.79–3.00)
 G490.230.371.25 (0.61–2.60)
 H113−0.000.281.00 (0.58–1.74)
 I341.240.503.45 (1.30–9.17)a
 E132

Sexuality needs

Three variables were identified as significant predictors of reporting “some need” in this domain: age, gender, and types of treatment received in the last month. Compared with those ages 71–90 years, participants ages 31–70 years were significantly more likely to report a need for help, but those ages 18–30 years did not significantly differ in their reported information needs from those ages 71–90 years. Women were significantly more likely to report some need for help than men. Patients who received only chemotherapy or only immunotherapy in the last month were significantly more likely to report sexuality needs than patients who received more than one type of treatment, whereas patients who received only hormone treatment in the last month were less likely to report some needs. However, patients receiving only radiotherapy or surgery in the last month did not differ from those receiving more than one treatment in their likelihood to report sexuality needs, as indicated in Table 8.

Table 8. Significant Predictors of Reporting “Some Need” in the Sexuality Domain
VariablesFrequencyEstimateSEOdds ratio (95% CI)χ2dfP value
  • SE: standard error; CI: confidence interval; df: degrees of freedom.

  • a

    Significantly different from reference group.

Age (yrs)
 18–30160.440.701.55 (0.40–6.04)46.1235<0.001
 31–40441.870.386.51 (3.12–13.58)a
 41–501221.830.296.23 (3.52–11.01)a
 51–601621.070.272.90 (1.72–4.90)a
 61–701790.790.262.20 (1.31–3.69)a
 71–90164
Gender
 Male2890.570.181.77 (1.23–2.54)a2.08210.149
 Female398
Treatment received in last mo
 Surgery23−0.390.470.68 (0.27–1.69)25.0145<0.001
 Immunotherapy35.920.74370.81 (87.41–1573.08)a
 Chemotherapy1250.630.221.88 (1.23–2.86)a
 Radiotherapy114−0.390.260.68 (0.41–1.12)
 Hormone treatment5−4.310.500.01 (0.01–0.04)a
 Other/multiple treatments417

DISCUSSION

The current study represents a cross-sectional view of the perceived needs of patients undergoing treatment for a cancer diagnosis. However, there are a number of limitations that should be considered when interpreting the results. First, a comparison of the study participants with the 1994 NSW Central Cancer Registry data34 indicate that the current study sample overrepresented females; cases of breast, bowel, colon and rectal cancer; and those ages 31–60 years. Males; prostate carcinoma, lung carcinoma, and skin cancer/melanoma cases; and patients ages 71–85 years were underrepresented. This may have been due to the large size of both samples, which may have magnified small differences. Furthermore, the NSW population-based cancer data includes patients attending both public and private treatment centers, whereas the study sample included only patients attending public treatment centers.

Second, the data represents the views of cancer patients in one Australian state and may therefore limit the generalizability of the results to other states and territories. However, the sample was drawn from most of the major public oncology treatment centers in that state and is therefore likely to represent the different populations and range of oncology services offered across most parts of Australia.

Third, the response rate (65%) was considerably lower than the consent rate (99%). The issue of low response rates associated with the mailing back of surveys by respondents has plagued similar research.36–40 Although telephone and in-clinic surveys have been found to produce higher response rates,36 they are generally more costly.37 Strategies for optimizing the response rates of mail-back surveys have been tested and include telephone reminder calls and shortened surveys.38, 39

Finally, the exclusion of patients considered too ill to participate and unable to speak adequate English are likely to result in an underestimation of the specific needs of these cancer patients.

Despite these limitations, the current study represents the first large-scale study to assess the prevalence and predictors of perceived needs across a comprehensive range of domains. The sample included patients at each stage of the cancer treatment continuum, ensuring that a comprehensive range of treatment experiences would be included. Recruitment of the sample from a variety of public treatment centers enabled a mix of rural, remote, and urban areas, as well as patients of different socioeconomic backgrounds, to be surveyed. Furthermore, a valid and reliable measure encompassing a comprehensive spectrum of need domains was utilized.

Overall, the results suggest that cancer patients continue to experience high levels of unmet needs across a range of domains. The highest levels of need were found to be in the psychologic domain, which accounted for half of the top 10 unmet needs items in this study, with a further 3 items from the health system and information needs domain and 2 from physical and daily living.

The prevalence of perceived needs reported by participants in this study were lower than that reported in a previous study by Foot et al.,23 which had a sample of mixed cancer patients and used a similar needs assessment instrument. This finding may reflect improvements in the care of cancer patients since this initial Australian research was undertaken. Furthermore, the study by Foot et al.23 found the highest level of unmet needs to be in the information domain. This finding is in contrast to the current study, which found the highest levels of unmet needs in the psychologic domain. It is possible that this shift in perceived needs to psychologic issues reflects an improvement in the provision and quality of information given to cancer patients. Although this is encouraging, inadequacies in the provision of information persist, highlighting the need to develop more innovative information provision strategies. However, the findings of the current study are consistent with other research showing high levels of unmet need in the psychologic,23, 25–27 physical/daily living,27–31 and communication/information domains.22, 24, 26

The results also show that subgroups of patients experience different types of needs, with the predictors of reporting some unmet need for help varying according to the domain examined. Regression analyses revealed that patients in remission had fewer psychologic, information, daily living, and patient care unmet needs than patients not in remission. This finding is not surprising and is in keeping with other studies which have found that patients with advanced disease have significantly higher levels of need and unmet need than patients with localized disease.23, 29, 41, 42

Age was also associated with higher levels of unmet need in the psychologic, health system and information, patient care and support, and sexuality domains. Cancer patients ages 31–60 years consistently displayed higher levels of unmet need than those age 70 years or older. Again, this finding is consistent with other research claiming that cancer and its treatment has a greater psychosocial impact on younger patients than on older patients.23, 24, 26, 41, 42 This may reflect a difference in attitudes toward reporting unmet needs; in other words, younger people may be more amenable to disclosing such needs, in contrast with older adults, who may believe that they should be able to cope and hence keep their needs more private.

Gender was associated with reporting some unmet need in the psychologic and patient care and support domains, with females reporting higher levels of unmet need than males. Although this result may have been influenced by the large sample of female cancer patients in this study (58%), it is consistent with other research.30, 42

The treatment center was identified as a significant predictor of reporting some unmet need in the psychologic, physical and daily living, and patient care and support domains. Therefore, it is not surprising that differences in the prevalence of unmet needs were observed between this and other studies, given that they have obtained patient samples mainly from only one treatment center, reinforcing the importance of sampling across different groups. Further research is currently underway by the investigators to identify the treatment center characteristics contributing to these differences in reported needs.

The type of treatment received in the last month was associated with some need in both the health system and information domain and the sexuality domain. Patients receiving immunotherapy, chemotherapy, or hormone treatment were more likely to report greater sexuality needs than those receiving “other” treatments, and this result may be due to the physical side effects of those treatments.

Time since diagnosis and the cancer site currently receiving treatment were found to predict some need in the patient care and support domain. Patients with multiple cancer sites; lung, colon, or rectal carcinoma; or a brain tumor had higher levels of unmet need than breast carcinoma patients. Time since last admission for treatment was found to predict some need in the physical and daily living domain. Patients who had last attended the clinic more than 1 year ago were less likely to report physical and daily living needs than those who had attended in the last month. This may reflect a familiarity with the treatment process and its side effects and the likelihood that those who last attended the clinic more than 1 year ago may not be in an intensive phase of active treatment.

The main purpose of conducting a large-scale survey of patients with cancer is the improvement of their care. The current survey is particularly valuable, as it provides clinicians with specialized knowledge of the particular needs of subgroups of cancer patients. This increased knowledge could facilitate communication between clinicians and patients, thereby improving aspects of care, such as decision-making regarding treatment. A fuller understanding of the impact of the disease on patients' lives also assists clinicians in focusing their consultations on those issues most relevant to the patient and to tailor their health care accordingly. Ultimately, the assessment of patients' needs enables identification and wider adoption of the aspects of care that best meet patients' needs.

There is some evidence that interventions aimed at improving patient outcomes do benefit patients with cancer. For example, a recent review by Burke and Kissane43 found that general practitioners, surgeons, medical and radiation oncologists, specialist nurses, and allied health professionals were effective providers of psychosocial support. In breast carcinoma patients, counseling interventions by specialist breast nurses significantly reduced anxiety and depression;44, 45 relaxation training and imagery significantly reduced anxiety related to radiotherapy,46, 47 whereas relaxation training, imagery, and systematic desensitization significantly reduced the side effects of chemotherapy.48, 49 These findings reinforce those of Hill et al.,50 whose review of psychosocial interventions for adult patients with cancer concluded that such programs are efficacious in relieving self-reported psychologic distress. Of significance, this review recommended that interventions are tailored to those patients who require them and not all patients.

The results of the current study provide an impetus for the development and testing of interventions tailored to meet the needs of cancer patients. This may include a combination of strategies, such as structural changes to the provision of care, improvement of the interactional skills of health professionals, improvement of the provision of or access to resources, or providing feedback to clinicians. The research team is currently conducting a randomized, controlled trial assessing the effectiveness of providing clinicians with printed feedback about their patients' levels of physical symptoms, anxiety, depression, and supportive care needs in reducing the levels of these problems in their patients. It is likely that the needs of some cancer patients will never be fully met and that some levels of perceived unmet need will always be detected. Hence, it is important to monitor routinely the unmet needs of cancer patients so that health services and health care professionals can implement and streamline those components of oncology care that best meet the needs of their patients.

Acknowledgements

The authors thank the staffs of the participating hospitals for their assistance and cooperation in carrying out the project, and also Janet Anthes, Adam McLean for his assistance in undertaking this research, and Ian Clare for statistical advice and support.

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