The supportive care needs of newly diagnosed cancer patients attending a regional cancer center

Authors

  • Timothy J. Whelan B.M., B.Ch., M.Sc.,

    Corresponding author
    1. Departments of Medicine and Clinical Epidemiology & Biostatistics, McMaster University and the OCTRF Hamilton Regional Cancer Centre, Hamilton, Ontario, Canada
    • Supportive Cancer Care Research Unit, OCTRF Hamilton Regional Cancer Center, 699 Concession Street, Level 3-60, Hamilton, Ontario, L8V 5C2, Canada
    Search for more papers by this author
  • E. Ann Mohide M.Sc.,

    1. School of Nursing, McMaster University, Hamilton, Ontario, Canada
    Search for more papers by this author
  • Andrew R. Willan Ph.D.,

    1. Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada
    Search for more papers by this author
  • Andrew Arnold M.D.,

    1. Department of Medical Oncology, OCTRF Hamilton Regional Cancer Centre, Hamilton, Ontario, Canada
    Search for more papers by this author
  • Michelle Tew B.Sc.N.,

    1. School of Nursing, McMaster University, Hamilton, Ontario, Canada
    Search for more papers by this author
  • Scott Sellick Ph.D.,

    1. Department of Psychosocial Services, OCTRF Northwestern Ontario Regional Cancer Centre, Thunder Bay, Ontario, Canada
    Search for more papers by this author
  • Amiram Gafni Ph.D.,

    1. Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada
    Search for more papers by this author
  • Mark N. Levine M.D., M.Sc.

    1. Departments of Medicine and Clinical Epidemiology & Biostatistics, McMaster University and the OCTRF Hamilton Regional Cancer Centre, Hamilton, Ontario, Canada
    Search for more papers by this author

Abstract

BACKGROUND

The objective of this study was to examine the physical and emotional health status, self-perceived problems, and needs of newly diagnosed cancer patients to determine and plan supportive care strategies.

METHODS

A cross-sectional survey of newly diagnosed cancer patients attending a regional cancer center during a 6-month period was performed. Patients with breast, colorectal, head and neck, lung, and prostate carcinoma as well as nonmelanoma of the skin were selected randomly. Patients were interviewed prior to their first appointment at the clinic. Physical health status was assessed using the Symptom Distress Scale, psychologic health status was assessed with the General Health Questionnaire (GHQ), day-to-day functioning with the Rapid Disability Scale, and social support with the modified Sarason's Social Support Scale. Perceived needs were assessed in a number of ways, including identification of patients' specific social concerns and informational needs, and by asking them to list their current problems or concerns.

RESULTS

Of 156 eligible patients, 134 completed the interview. One hundred and twenty-nine patients (96%) reported current symptoms that included fatigue (66%), worried outlook (61%), difficulty sleeping (48%), and pain (42%). Forty-four patients (33%) were identified as psychologically distressed with a GHQ score of ≥ 6. One hundred and fourteen patients (85%) had informational needs, 89 (66%) indicated ≥ 1 social concerns, and 55 (41%) reported a need for assistance with day-to-day living.

CONCLUSIONS

Patients with newly diagnosed cancer commonly report symptoms related to fatigue, pain, and psychologic distress. Other frequently reported issues relate to the need for information and social concerns regarding the patients' ability to take care of their home and maintain family and other relationships. Awareness of these issues is important for planning supportive care interventions for newly diagnosed cancer patients. Cancer 1997; 80:1518-24. © 1997 American Cancer Society.

The term supportive care in oncology has traditionally been used to describe dimensions that directly support patients' anticancer therapy, such as antiemetics, transfusions, and antibiotics, or the care of symptomatic patients with advanced disease.1, 2 Recognizing the need to provide more comprehensive services to all cancer patients at any stage of their illness, the authors have defined supportive cancer care as those health services and related activities designed to help patients and their families with their cancer experience during the diagnostic, treatment, follow-up, and palliative phases.2 Thus, supportive cancer care includes not only issues of physical or symptom support, but other domains, such as instrumental and social care, the need for information, psychologic support, and spiritual needs.1, 3

As a first step in determining or planning supportive care strategies for newly diagnosed cancer patients, the authors were interested in obtaining information regarding the needs of this group of cancer patients. This patient group was considered to have significant problems and needs due to health issues, such as comorbidity, as well as the uncertainty and stigma attached to the diagnosis of cancer. The initial visit to the cancer center was considered to be a point in time when interventions might improve the health and well being of such patients.

A review of published studies on needs assessments of cancer patients failed to identify studies that specifically examined the problems and needs of patients just prior to entry into the cancer specific health care system.4-13 Because limited data existed, a survey was considered necessary. The primary objectives of this study were to examine the demographic characteristics and the physical, emotional, and social health status of new cancer patients referred for the first time to a regional cancer center; to identify the self-perceived needs of these patients, and to identify their existing resources and use of community services. It was the intent that this information would provide important baseline data that would assist in developing and targeting future supportive care interventions for this group of patients.

METHODS

A cross-sectional survey of cancer patients attending the Hamilton Regional Cancer Center (HRCC) for the first time was conducted. The HRCC is a tertiary comprehensive care cancer facility providing radiation therapy, chemotherapy, and supportive care. It is one of 9 cancer centers in Ontario and serves a population of 1.8 million in the central west region. All patients who attended for the first time with a first primary carcinoma of the lung, breast, prostate, colorectum, head and neck, or skin (nonmelanoma) were screened for eligibility. A sample of patients with malignancies of these disease sites was selected to encompass a range of prognoses, age, gender, and likely therapeutic modalities. Eligibility criteria included that the patients be age ≥ 18 years, speak English or have an interpreter available, and provide verbal consent to be interviewed. Patients with known confusion (due to brain metastases, degenerative dementia, etc.) or otherwise judged too ill to participate were excluded.

All patients were referred for appointments through a central referral office at the HRCC. It was feasible to interview 6 patients per week. Information on a patient's clinical history, which was provided by referring physicians, was screened by the research assistant and eligible patients were identified. The selection was limited to one patient with a malignancy from each disease site during any particular week. If there was more than one referral per disease site, one subject was selected randomly from the total number referred. The study was conducted over a period of 6 months.

Patients were contacted by telephone by the research assistant to explain the purpose of the survey and to obtain informed consent. Patients were told that participation in the study was entirely voluntary and the care they received would not be affected by their decision to participate or not. Patients were assured their responses to the interview would remain confidential. Consenting patients were asked to meet with the research assistant for approximately 1 hour prior to seeing the physician. This method was chosen to minimize any interference with the functioning of the cancer clinic or to cause undue patient discomfort or inconvenience.

Design and Content of the Interview

The interview, using both fixed choice and open-ended questions, was administered in two stages. Demographic data were first collected over the telephone. The remainder of the questionnaire was administered in the face-to-face interview at the time of the patient's appointment. The content of the interview was developed by a multidisciplinary group after reviewing the existing literature. The main content areas of the questionnaire were 1) demographics and background data; 2) physical and emotional health status; 3) patient needs; and 4) existing resources defined as persons or services a patient may have access to for support.

Demographic Data

Demographic data collected included age, gender, living arrangement, number of dependents, work status, level of education, and current residence.

Physical and Emotional Health Status

Patients were asked to rate their current health using a 5-point Likert scale from "1 = Excellent" to "5 = Bad," and they were asked to list any other health problems they may have had. Recent hospitalizations, the amount of time spent in bed during the day, or time lost from work for the last month were solicited to measure the severity of the disability. Questions regarding the presence of pain, pain duration, and severity of pain were asked. Information regarding the use of medication and the relief of pain experienced was sought to assess pain control needs.

Symptom distress was measured using the Symptom Distress Scale (SDS).14, 15 The SDS, a self-administered questionnaire, is comprised of a list of 13 items asking patients to identify the degree of distress they have experienced due to a specific symptom during the past week. Responses are answered on a 5-point Likert scale ranging from "1 = No Distress" to "5 = Extreme Distress." The total SDS score represents the sum of items and ranges from 13-65. The scale had demonstrated good reliability and validity as shown in a study that examined symptom distress in persons with a diagnosis of one of two life-threatening diseases.16 In addition, this scale had been used with a wide variety of cancer patient populations including individuals with breast and lung carcinoma.

Psychologic distress was measured using the General Health Questionnaire (GHQ).17, 18 The GHQ, a self-administered questionnaire, is comprised of a list of statements asking respondents to compare their recent experience with their usual state on a 4-point scale of severity from "Better Than Usual" to "Much Less Than Usual." The 30-item version of the GHQ was used in this survey.19 The GHQ was developed to detect cases of affective disorders that occur among patients treated by general practitioners.17 It has been widely used to detect the level of nonpsychotic psychiatric illness in these and other populations, including cancer patients. A cutoff of ≥ 6 has been used in the 30-item scale to differentiate cases from noncases.18 The GHQ had demonstrated good validity and reliability and had been used in previous needs assessment surveys in cancer patients.10-12

Patient Needs

Day-to-day functioning

A modified version of the Rapid Disability Scale20 was administered to patients. Patients were asked if they needed assistance with 16 items involving activities of daily living ranging from eating and walking to shopping and home maintenance. There were 4 categories of response from "No Assistance" to "Complete Dependence." If the patient indicated that assistance was required, information regarding who assisted them with this activity was sought. This was asked to ascertain how much caregiving currently was required.

Social concerns

For the purposes of this study, a short questionnaire regarding common social concerns of patients diagnosed with cancer was developed. Patients were asked, "Are you concerned about your ability . . ." followed by 8 items, with a response option of yes or no. Items included: to earn a living at your previous work, to care for your partner, to care for your children, to maintain your relationship with your children, to take care of your home, to be intimate with your partner, to look attractive, and to maintain your present friendships.

Informational needs

Patients were asked how much information they usually liked to have about their health. Patients were asked to indicate if they had any specific informational need and what types of information (e.g., information relating to diagnosis, treatment, prognosis, procedural issues, etc.) were most important. They also were asked about their knowledge of what support services were available in the community.

Current problems

Patients also were asked to identify and rank in order the problems or concerns they deemed most important to determine in a global sense the relative importance of current needs.

Resources

Social support

Three items modified from Sarason's Social Support Questionnaire21 asked the patient to list people they counted on to be dependable, for consolation when the patient was upset, and for help with decision-making; and to rate how well their support met the patient's needs on a Likert scale from "1 = Not At All" to "6 = Completely."

Current community resource use

A list of community services (e.g., visiting nurse, Meals on Wheels, transportation services, etc.) was given to patients and they were asked whether they had received any of these services in the previous month. It was estimated that a portion of new cancer patient referrals already would have received some form of community service. This information was captured for the possibility of estimating future needs as well as insuring the appropriate utilization of services already provided to patients.

Before the study was initiated, the interview was pretested to examine the flow and clarity of items and to ensure the administration was acceptable to patients.

Statistical Analysis

Descriptive statistics were generated for the demographic characteristics and outcome variables. To identify patients at higher risk for symptom or psychologic distress, multiple linear and logistic regression models were used to examine factors predictive for symptom distress (the total SDS score), and psychologic distress (GHQ score ≥ 6). Dependent variables evaluated included age, gender, living arrangement, education, disease site, stage of disease, and time from diagnosis to appointment at the HRCC.

RESULTS

Patient Population

During a 6-month period, 165 patients were identified as eligible for the study. Nine patients were excluded: 7 because they were too ill to participate and 2 because they were unable to speak clearly. Of the remaining 156 eligible patients, 134 (86%) agreed to be interviewed. The mean age of patients was 63.2 years (standard deviation [SD], 12.1). Table 1 describes other demographic characteristics of the sample population. The mean time between date of diagnosis and date of appointment at the HRCC was 35 days (SD, 38.3).

Table 1. Patient Characteristics (n = 134)
Age (yrs)
  <5021 (16%)
  51-6022 (16%)
  61-7050 (37%)
  >7041 (31%)
Males78 (58%)
Living arrangement
  Partner88 (66%)
  Alone25 (19%)
  Other22 (16%)
Has dependent child17 (13%)
Education
  ≤Primary36 (27%)
  Secondary63 (47%)
  College or university34 (26%)
Employment status
  Employed28 (21%)
  Homemaker18 (13%)
  Retired75 (56%)
  Unemployed/extended leave13 (10%)
Disease site
  Breast28 (21%)
  Colorectum10 (7%)
  Head and neck23 (17%)
  Lung27 (20%)
  Prostate26 (19%)
  Skin20 (15%)
Stage
  Metastatic12 (9%)

Physical and Emotional Health Status

Patients described their previous health as excellent in 47 cases (35%), good in 58 (43%), and fair to poor or bad in 28 (21%). Forty-eight patients (36%) reported time lost from work in the past 30 days because of poor health, and 70 patients (52%) reported being hospitalized within the past 3 months. Table 2 illustrates the symptoms and level of distress reported by patients in descending order. The mean total SDS score was 23.6 (SD, 4.3). Low energy, worried outlook, difficulty sleeping, and cough were noted by > 40% of patients.

Table 2. SDS Scores By Symptom (n = 132)a
Symptom1 (no problem or distress)2, 3, or 4, (moderate distress)5 (intense distress)
  • SDS: Symptom Distress Scale.

  • a

    One hundred thirty-two patients completed the Symptom Distress Scale.

Fatigue45 (34%)85 (64%)2 (2%)
Outlook51 (39%)75 (57%)6 (5%)
Insomnia68 (52%)60 (46%)4 (3%)
Pain (frequency)76 (58%)51 (38%)5 (4%)
Pain (intensity)96 (73%)36 (27%)--
Cough77 (58%)55 (42%)--
Concentration94 (71%)37 (28%)1 (1%)
Breathing96 (73%)36 (27%)--
Appetite100 (76%)32 (24%)--
Bowel102 (77%)30 (23%)--
Appearance109 (83%)23 (17%)--
Nausea (frequency)126 (95%)5 (4%)1 (1%)
Nausea (intensity)130 (98%)2 (2%)--

Fifty-five patients (41%) were experiencing pain. In patients who described pain, 36 (66%) indicated that it was worse than mild, and 37 (67%) were taking medication; of these 37 patients, only 22 (60%) reported adequate relief.

The mean GHQ score was 5.1 (SD, 6.4). Using a cutoff of > 6, 44 patients (33%) of the sample group were identified as psychologically distressed.

Patient Needs

Day-to-day living

Fifty-five patients (41%) reported ≥ 1 needs for day-to-day living. Patients' greatest needs were for home maintenance (35 patients), house cleaning (26 patients), and shopping (15 patients). Patients' greatest personal needs were for assistance walking up and down stairs (14 patients), going outside (14 patients), bathing (12 patients), and dressing (10 patients). Assistance with walking, grooming, and toileting were indicated less often.

Social concerns

Eighty-nine patients (66%) indicated a social concern of one type or another. These concerns in order of frequency reported were concerns about the ability to take care of their home (54 patients), to look attractive (49 patients), maintain friendships (48 patients), maintain relationship with children (44 patients), be intimate with partner (37 patients), and care for partner (33 patients). Concerns regarding providing care for children (18 patients) and earning a living (12 patients) were reported less frequently. Some concerns were reported more often by males than by females (e.g., earn a living, care of partner) and vice versa (e.g., look attractive, care of children).

Informational needs

One hundred and twelve patients (84%) identified themselves as the type of person who wanted a great deal of information or enough information to be well informed. Only 22 patients (16%) wanted to know only the essentials or very little information. One hundred and fourteen patients (85%) had specific informational needs. The types of information patients indicated to be most important were treatment (84 patients) and disease-related information (75 patients) followed by procedural issues (42 patients), issues related to health promotion (15 patients), and social/community support (10 patients).

With respect to supportive services offered in the community, 100 patients (75%) had heard about the Canadian Cancer Society (CCS) services, such as volunteer drivers and financial services; 50 patients (37%) had heard about volunteer visitors or support groups organized by the CCS; and 29 patients (22%) had heard about the Cancer Information Service.

Current problems (concerns)

One hundred and six patients (79%) identified current problems for which they needed help. Their current health status was identified as a problem by 59 patients; associated family issues by 36 patients, emotional concerns by 23 patients, financial issues by 15 patients, social concerns by 8 patients, and practical issues by 7 patients. The most important problem identified by patients in order of decreasing frequency is indicated in Table 3.

Table 3. Most Important Problem (n = 106)
Health46 (43%)
Family28 (26%)
Emotional12 (11%)
Financial8 (8%)
Social6 (6%)
Practical6 (6%)

Resources

Social support

One hundred and twenty-one patients (90%) had someone they could count on to be dependable, 104 (78%) could identify someone who could console them if they were upset, and 119 (89%) could identify someone they could count on to help them make decisions. In over 88% of these instances, the people identified met the patient's needs very well.

Current community resource use

Thirty-nine patients (29%) reported community resource use within 30 days of their visit. Resources used included a visiting nurse (24 patients), a house cleaner (9 patients), transportation services (8 patients), and special aids (including a wheelchair, oxygen, bath seat, etc.) (6 patients). Use of other services (e.g., volunteer visitors, support groups, social worker, visiting homemaker, physiotherapist, occupational therapist, or nutritionist) were infrequent. Nineteen patients (14%) indicated that although they had not utilized these services, they felt they would benefit from them.

Regression Analysis

Age (P = 0.01), gender (P = 0.006), and disease site (P = 0.001) predicted for total SDS score, such that younger patients, women, or those with lung or prostate carcinoma were more likely to exhibit higher symptom distress. Similarly, living arrangement (P = 0.03) and disease site (P = 0.04) predicted for psychologic distress, such that patients who lived with a partner/others or those who had lung or breast carcinoma were more likely to be psychologically distressed.

DISCUSSION

Previous needs surveys have failed to focus on newly diagnosed patients at the point of entry into the cancer specific health care system. This study represents a comprehensive assessment of the health status and needs of this group of cancer patients as a first step in planning supportive care strategies for newly diagnosed cancer patients.

The results indicate that the majority of such patients are symptomatic. Commonly reported symptoms include lack of energy, worried outlook, difficulty sleeping, pain, and cough. This latter symptom probably reflects the number of patients with lung and head and neck carcinomas in this survey. Pain was reported by 40% of new cancer patients, and 40% of those receiving medication reported inadequate relief. Although patients reported many symptoms, the mean total SDS score was < 26.7, which was the mean score for 67 lung carcinoma patients with advanced inoperable disease in another study.16 Psychologic distress was identified in 33% of the patients; as a point of comparison, 21% of people surveyed with the GHQ in a Canadian study of a general population with a similar age and gender distribution exhibited psychologic distress.22 The regression analysis suggests that patients with lung carcinoma were particularly likely to exhibit symptom or psychologic distress.

With respect to the perceived needs of newly diagnosed patients, informational needs and social concerns relating to the ability to take care of the home and maintain family and other relationships were commonly reported. Patients' needs for day-to-day living were less frequently reported. Only 20% of patients reported they did not have any current problems or needs. Of those reporting current problems, the most important were related to their current health status, followed by family, emotional, and financial issues. Despite the fact that the vast majority of patients had identified ongoing problems or concerns, only a limited number reported utilization of community resources. However, most patients identified someone they could depend on.

These results are important because they focus on patients recently diagnosed with cancer, in contrast to other needs assessment studies.4-13 Previous studies have tended to focus on patients in the first 2 years after diagnosis,5 later in follow-up,9-13 or in the advanced or terminal4, 6-8 stages. Such patients may have different needs owing to the acute and long term complications of treatment, and the physical and emotional symptoms associated with progressive disease.8

The authors identified two studies in the literature that attempted to compare the needs of terminal or advanced patients with those diagnosed earlier in the course of their illness.7, 23 Houts et al. compared the needs of a random sample of patients drawn from the Pennsylvania Death Registry.7 Four hundred and thirty-three family members or close friends of these patients were interviewed concerning patients' unmet needs during the last month of life. These results were compared with 106 patients diagnosed with cancer within the previous year. The groups were comparable with respect to age and gender. Most unmet needs were similar in the two samples. However, there were marked differences in needs related to activities for daily living, access to health care, and transportation, which were almost three times as frequent in the terminal period as in the period after diagnosis. Similarly, Mor compared the needs of terminal patients in the National Hospice study, the needs of patients undergoing active chemotherapy or hormonal treatment from the Concrete Needs Study, and the needs of patients diagnosed with cancer within 1 year from the Brown Cancer and Aging Study.23 Although in this report patients did differ according to demographic variables, and comparable data available for each study was limited, the results suggest pain was more common in terminally ill patients (68%) versus those recently diagnosed (38%), and nausea was reported more frequently in terminally ill patients (43%) and patients undergoing active treatment (50%) than patients recently diagnosed (12%). Terminally ill patients also demonstrated higher scores on the depression subscale of the Profile of Moods State than patients recently diagnosed.

Vachon et al. performed a needs survey of patients primarily in the follow-up phase of their illness in three different Canadian provinces: Prince Edward Island, Manitoba, and Quebec.10-12 Results from each province were similar. In the province of Manitoba, 526 patients were interviewed. The majority (63%) were female and the mean age was 53.5 years. Disease sites represented included breast (28%), genitourinary/prostate (28%), gastrointestinal (15%), and lung (5%). The mean time to interview since the initial diagnosis was 57.6 months. Approximately 19% of the patients were identified as having advanced disease at the time of the interview. Commonly reported symptoms included fatigue (37%), sleep disturbances (23%), and pain (21%). Prevalence of emotional distress (GHQ ≥ 6) was identified in only 18% of patients.

Although there are limitations to cross-study comparisons, the current study results suggest that the needs of newly diagnosed cancer patients may differ from those of patients on active treatment in follow-up or receiving palliative care. Newly diagnosed patients may have more physical and emotional needs, at least in comparison with patients in follow-up and less need for practical assistance. Longitudinal prospective cohort studies would more clearly delineate the extent of these differences. Such studies are necessary to improve understanding regarding the differential needs of cancer patients as they progress along the continuum of care and for the appropriate targeting of supportive cancer care services.

Although an extensive amount of information was collected on each patient in this study, certain limitations can be identified. A specific inquiry was not made regarding existential/spiritual, sexual, or financial concerns. Similarly, specific information regarding comorbidities and prior interventions was not collected uniformly. Other centers interested in determining the supportive care needs of their patients may wish to consider collecting this type of information in addition to that discussed in this article. This study was limited to certain disease sites and one regional cancer center in Canada. Further work may clarify the generalizability of the study findings to other centers. In the interim, the results of the current study do provide a useful framework with respect to planning for supportive care interventions within our center.

This study has been instrumental in leading to changes in clinical practice in the delivery of supportive care at the authors' cancer center and in initiating important research in this area. To provide a useful supportive care service, a need must be identified, potential barriers removed, and effective and efficient interventions instituted. As a first step, this study has identified the supportive needs of new cancer patients. As a result, the HRCC has established a Supportive Care Program that is responsible for the coordination and provision of supportive services, such as psychologic, social, and nutritional counseling, and symptom management. This study also underlined the importance of recognizing common symptoms of new cancer patients, such as fatigue, pain, and psychologic distress. Based on the findings of this study, a new patient assessment form has been developed for use at HRCC to better identify patient symptoms and emotional concerns early in the course of their illness.

In view of the problems with adequate pain control identified in this study, methods (e.g., patient-oriented practice guidelines) to improve pain management through better communication between the patient and health care team currently are being investigated at the HRCC.24 Informational needs as noted in a previous Ontario survey13 continue to be important, especially for new cancer patients. Patients appear to be more concerned about treatment and disease specific information as opposed to procedural issues. Instruments (e.g., Decision Boards) designed to improve communication and patient involvement in decision making also currently are being evaluated.25, 26 Research to identify more effective and efficient ways to address the social concerns of patients either directly or through the family is ongoing.

Acknowledgements

This study is a project of the Supportive Cancer Care Research Unit, McMaster University, and was supported by a Health System-Linked Research Grant from the Ontario Ministry of Health.

Institutions at which study was performed: Departments of Medicine and Clinical Epidemiology & Biostatistics, McMaster University and the OCTRF Hamilton Regional Cancer Center, Hamilton Ontario, Canada, and Thunder Bay Regional Cancer Center, Thunder Bay, Ontario, Canada.

Ancillary