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The utilization of telephone follow-up in the advanced cancer population: a review of the literature Background: Palliative cancer patients often require clinic or hospital follow-up after any treatment intervention they may have received. This is typically done in person at either a hospital or a clinic. In these advanced cancer patients, this may be burdensome and result in attrition. Telephone follow-up is becoming more frequently used as an adjunct to clinical follow-up. It can be conducted for both clinical trials, as well as interventional purposes. The purpose of this study was to review the literature and examine the utility and effectiveness of telephone follow-up in the advanced cancer population. Methods: A literature search was conducted on Medline (1980 – April week 4 2012), Embase (1980 – week 17 2012), the Cochrane Central Register of Controlled Trials (April 2012) and CINAHL (1981–July 31 2012). Results: A total of 11 studies were identified that were published between 2001 and 2011. All studies were in the clinical trial setting. Studies that utilized telephone follow-up in the advanced cancer population, as well as studies that compared the feasibility of telephone follow-up with hospital follow-up, were included in this review. Follow-up at week 4 (month 1) was the most common interval for patient contact. Information collected during the contact varied with the study; however, the most commonly used tool was the Edmonton Symptom Assessment System. Other information included analgesic diary, patient feedback, satisfaction with the care and post-treatment side effects, along with a variety of quality of life questionnaires. Some studies provided information to the patient about protocols for care, advice and coping strategies. Attrition was common even with the use of telephone contact in place of clinical follow-up. Conclusion: Telephone follow-up is a feasible alternative to traditional hospital followups for assessment of symptom palliation. There are fewer burdens on the patient, allowing for a better maintenance of quality of life and lower rates of attrition in clinical trials. Patients had an overall positive opinion of the use of this alternative approach with no common disadvantages. A combination of follow-up strategies, such as clinic follow-up and telephone contact for those not attending, may result in a more comprehensive assessment.
Michelle Zhou1, Lori Holden*1, Gillian Bedard1, Liang Zeng1, Henry Lam1, Dominic Chu1, Nicholas Lao1, Natalie Lauzon1 & Edward Chow1 Department of Radiation Therapy, Odette Cancer Centre, Sunnybrook Health Sciences Centre, 2075 Bayview Avenue, Toronto, ON, M4N 3M5, Canada *Author for correspondence: Tel.: +1 416 480 5000 ext. 7044 Fax: +1 416 480 4672 [email protected] 1
KEYWORDS: advanced cancer n clinical trials n review n telephone follow-up
Advanced cancer patients are often polysymptomatic, with shorter life expectancy and decreased quality of life (QOL) being associated with the illness. Treatment for this population shifts from curative to palliative, focusing on relieving symptoms and managing complications, and improving QOL [1,2]. Patient follow-up clinics allow for the monitoring of patients post-treatment for their cancer, and for the purposes of clinical trials, they allow for continued data collection [3]. The assessment of the treatment outcomes and associated sequelae is dependent on information obtained from the patient, such as their clinical status, toxicities, symptom improvement/deterioration, performance status and QOL [4]. Clinical trials are important for driving advances in treatment options and delivery. However, patients with advanced cancer often have
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limited life expectancy and may be adverse to any additional burdens these trials could impose, which consequently affects their willingness to participate [2,5,6]. As a result, clinical trials are often closed prematurely due to difficulty in reaching the appropriate sample size [2]. In some cases, although the sample size may be reached, the data quality may suffer from a high attrition rate [2]. Patient follow-up, therefore, is difficult for palliative patients in both clinical practice and in research trials [4,5]. Many approaches have been taken to reduce symptom, emotional and QOL burden on palliative care patients. One of the methods includes the shortening of QOL questionnaires, such as the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 to the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative specifically for patients with advanced cancer [7]. Questionnaires that are administered to patients with advanced cancer and limited life expectancy need to be brief in order to reduce the burden, while still capturing the relevant issues [7]. Telephone follow-up calls can also reduce the burden and disruption felt by patients by allowing them to remain at home with their family and caregivers during the follow-up. Unlike clinic follow-up, patients can avoid traveling but still be provided with a method of care. For staff, benefits are also seen with reduced workload directly in the clinic [6]. Telephone interviews have previously been conducted to determine whether symptoms had improved following treatment, to monitor distress and patient satisfaction, to provide information and advice, and to help the patient with coping strategies [3–6,8–14]. Telephone followups may be conducted for clinical trials, as well as for interventional purposes. The main objective of this study is to review the use of telephone follow-up in place of clinical follow-ups in the palliative care setting. Information about the utility, effectiveness and attrition rates will be discussed. Methods
A systematic search was conducted using the OvidSP platform on the following databases: Medline (1980–April week 4 2012), Embase (1980–week 17 2012), and the Cochrane Central Register of Controlled Trials (April 2012). A search was also conducted using the EBSCO platform on the CINAHL database (1981– 31
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July 2012). The search was conducted using the search terms “Neoplasm Metastasis+”, “palliative care” or “terminal care” and “prospective studies” or “after care” coupled with “telephone”. Articles were selected based on title and abstract and then taken for further examination. Studies that utilized telephone follow-up in the advanced cancer population, as well as studies that compared the feasibility of telephone follow-up with hospital follow-up have been included in this review. Studies were included if they contained adult human subjects with advanced cancer receiving palliative or terminal care. Studies were considered eligible if the time of follow-up and the number of successful follow-ups were indicated. During screening of the literature search, publication types were not limited as long as the inclusion and exclusion criteria were met. Articles were also restricted to those written in English only. References for these articles were also explored for further relevant literature along with studies that cited the selected articles. Primary outcomes of interest were rates of attrition and success at each follow-up period. Along with this, any detailed analysis of the telephone follow-up experience was collected along with stated advantages/disadvantages for individual studies. M Zhou and L Zeng independently identified articles of potential interest. D Chu and N Lao checked the accuracy of the collected data. Descriptive statistics summarized the findings. Results ■■ Study characteristics
A total of 11 studies [3–6,8–14] were identified, including sample sizes ranging from 43 to 830 patients (Table 1). Many of the studies recruited patients from an outpatient radiotherapy clinic [4–6,8–11], while others contained a sample cohort from a palliative multidisciplinary symptom control clinic [12,13]. Two studies, however, did not specify the actual location in which patients were seen and the consent process had occurred [3,14]. Of the 11 studies, five specifically examined the feasibility of using telephone follow-ups in place of clinical follow-up in the palliative setting [3–6,8]. A study by Follwell et al. examined whether telephone follow-up at 1 week or 1 month would be more appropriate for measuring the effectiveness of outpatient palliative care [12]. Although the objectives of the remaining six studies did not include determining the feasibility of telephone follow-up calls, the use and results of this follow-up method were reported [9–11,13,14].
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Table 1. Details of studies involving telephone follow-up in the advanced cancer setting. Study (year)
Sample population
Age (years)
Assessment tools at follow-up
Performance status
Personnel Timing of conducting follow-ups follow-ups
Chow et al. (2005)
January 1999–December 2001 830 metastatic outpatients receiving radiotherapy for symptom palliation at the RRRP clinic (53% male and 47% female)
Median: 69 Range: 24–93
ESAS and analgesic diary
KPS Median: 60 Range: 10–90
Trained research assistant
Weeks 1, 2, 4, 8 and 12 after radiotherapy
[8]
Chow et al. (2001)
January 1999–August 1999 190 metastatic outpatients receiving radiotherapy for symptom palliation at the RRRP clinic (51% male and 49% female)
Median: 68 Range: 39–89
Modified ESAS and analgesic diary
KPS Median: 60 Range: 10–90
Trained research assistant
Weeks 1, 2, 4, 8 and 12 after radiotherapy
[5]
Dixon et al. (2010)
2 February 2009–20 July 2009 53 bone metastatic patients receiving radiotherapy at the RAPRP clinic (72% male and 28% female)
Mean: 69 ESAS, patient feedback
N/A
Radiation therapist
Weeks 1 and 4
[6]
Haddad et al. (2003)
1 July 2001–31 January 2002 56 brain metastatic patients treated in the Palliative Oncology Program, an outpatient radiotherapy clinic (50% male and 50% female)
Mean: 62.2 Range: 35–83
Standard data sheet about overall symptoms, side effects, radiotherapy and dexamethasone dosage
ECOG Mean (SD): 1.68 (0.8)
Advanced practice nurse or radiation therapist
Weeks 1 and 4
[4]
Follwell et al. (2009)
5 July 2006–5 April 2007 150 metastatic patients from the Outpatient Palliative Care Clinic (51% male and 49% female)
Median: 60 Range: 31–90
ESAS and Family Satisfaction with Advanced Cancer Care
ECOG score: 0: 6%, 1: 35%, 2: 34%, 3: 23%, 4: 2%
Weeks 1 and 4
[12]
Bruera et al. (2001)
July 1996–October 1997 110 advanced cancer patients at a multidisciplinary symptom control clinic (55% male and 45% female)
Mean: ESAS and at week 2, 58.93 satisfaction survey SD: 12.76
Week 2 satisfaction conducted by a clerk
Weeks 2 and 4 after first SCC visit
[13]
Fairchild et al. (2009)
August–December 2006 43 patients with bone metastases receiving radiotherapy at the RAPRP clinic (69% male and 31% female)
Median: 69.9 Range: 39–86
ESAS, post-treatment KPS and PPS side effects, Median: 70 consideration Range: 20–90 to revisit and recommendation
Nurse Weeks 1 practitioner and 4
Pituskin et al. (2010)
1 January–31 December 2007 57 outpatient bone metastatic patients attended the RAPRP clinic (62% male and 38% female)
Median: 70 Range: 40–88
ESAS
KPS Median: 60 Range: 10–90
Week 4
Ref.
[9]
[10]
The demographics for these patients were those that followed-up at 6 months; baseline demographics were not available. Total number of patients recruited was not stated in this study. All information was given in relation to the number of patients with at least partial data available. § The population for this study did not include all palliative patients. Patients in this cohort had stage II–IV ovarian cancer. BPI: Brief Pain Inventory; ECOG: Eastern Cooperative Oncology Group; EORTC: European Organization for Research and Treatment of Cancer; ESAS: Edmonton Symptom Assessment System; HADS: Hospital Anxiety and Depression Scale; KPS: Karnofsky Performance Scale; MOS: Medical Outcomes Social Support Survey; PPS: Palliative Performance Scale; QLQ: Quality of Life Questionnaire; RAPRP: Rapid Access Palliative Radiotherapy Program; RRRP: Rapid Response Radiotherapy Program; SD: Standard deviation. † ‡
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Table 1. Details of studies involving telephone follow-up with advanced cancer setting (cont.). Study (year)
Sample population
Age (years)
Assessment tools at follow-up
Performance status
Personnel Timing of conducting follow-ups follow-ups
Ref.
Kornblith September 1998–January 2003 et al. 189 advanced cancer patients (2006)† randomized and evaluated at baseline to receive telephone monitoring along with educational materials, or educational materials alone (52% male and 48% female)
Mean: 73 Monthly followSD: 5.7 ups: HADS, EORTC physical symptom items, MOS social support survey items Baseline, 6- and 9-month evaluation: EORTC QLQ-C30, HADS, MOS social support
KPS 90–100% 58% 70–89%: 32% 50–69%: 1% Unknown: 9%
Centralized, trained telephone monitors
Monthly for 6 months Evalutated at month 6 and month 9
[14]
Zeng et al. (2011)‡
Week 4: BPI Median: 65 Range: 30–89 Week 8: Median: 66 Range: 30–88 Week 12: Median: 64 Range: 30–88
KPS Week 4: Mean (SD): 71.9 (13.1) Median (range): 70 (30–90) Week 8: Mean (SD): 72.6 (11.8) Median (range): 70 (40–90) Week 12: Mean (SD): 72.5 (12.5) Median (range): 70 (40–90)
Trained research assistant
Weeks 4, 8 and 12
[11]
Specialist nurse
Every 3 months for 10 months
212 (week 4), 159 (week 8) and 133 (week 12) patients treated with radiation in the lower back at the RRRP clinic with at least partial data Week 4: 55% male and 45% female Week 8: 54% male and 46% female Week 12: 58% male and 42% female
Cox et al. 52 women with stage II– (2008)§ IV stable ovarian cancer consented and were called (100% female)
Mean: 62 Patients given blood test results and discussed them, current symptoms assessed, protocols for care consulted, information, advice and coping strategies provided
[3]
The demographics for these patients were those that followed-up at 6 months; baseline demographics were not available. Total number of patients recruited was not stated in this study. All information was given in relation to the number of patients with at least partial data available. § The population for this study did not include all palliative patients. Patients in this cohort had stage II–IV ovarian cancer. BPI: Brief Pain Inventory; ECOG: Eastern Cooperative Oncology Group; EORTC: European Organization for Research and Treatment of Cancer; ESAS: Edmonton Symptom Assessment System; HADS: Hospital Anxiety and Depression Scale; KPS: Karnofsky Performance Scale; MOS: Medical Outcomes Social Support Survey; PPS: Palliative Performance Scale; QLQ: Quality of Life Questionnaire; RAPRP: Rapid Access Palliative Radiotherapy Program; RRRP: Rapid Response Radiotherapy Program; SD: Standard deviation. † ‡
■■ Assessment tools at follow-up
Seven studies utilized the Edmonton Symptom Assessment System (ESAS) during the telephone follow-up [5,6,8–10,12,13]. This assessment consists of nine visual analog scales that assess pain, activity, nausea, depression, anxiety, drowsiness, appetite, sense of wellbeing and shortness of breath. Other assessment tools included: an analgesic diary [5,8], patient feedback [6,9,13], a patient-adapted
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version of the Family Satisfaction with Advanced Cancer Care [12], a standard data sheet to collect overall symptoms, side effects of radiotherapy and dexamethasone dosage [4], and standardized tools, such as the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30, the Hospital Anxiety and Depression Scale, Medical Outcomes Study Social Support Survey and Brief Pain Inventory.
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In one study by Cox et al., patients were given the results of their blood test during the telephone follow-up and discussed any implications of the results. A symptom assessment was also conducted and protocols for appropriate care for the reported symptoms were discussed. Patients were then provided with information, advice, coping and support strategies in physical, psychological and social domains [3]. ■■ Follow-up intervals
Eleven studies were included for discussion and analysis. Table 1 outlines the demographic information for each of these studies. As shown on Table 1, six studies included follow-ups at a minimum of weeks 1 and 4, with the remaining studies including follow-ups at a minimum of week 2 or monthly. In seven papers, patient follow-ups were conducted by medical personnel (four with either a radiation therapist or nurse) and three by trained research staff. The remaining papers reported follow-ups being conducted by ‘clerks’ (two) or were unreported (two). All but two papers reported using a prevalidated assessment tool, with the majority using the ESAS, in order to collect and report the data. Table 2 illustrates the time interval in which patients were contacted for follow-up and data collection. Patient attrition was noted in all but one study [6]. Table 1 shows the different degrees to which patient contacts were successful at different time intervals. As eluded to above, patient contact was at least attempted at week 1 in five papers, week 2 in three papers and at week 4 in nine papers. The specific rates for these time frames, as well as the monthly time frames can be seen in Table 2. Discussion
Follow-up of cancer patients after treatment typically consists of a brief history, examination, tests and reassurance. Basic clinical information can be gathered over the phone while contact and surveillance based on clinical history can be maintained through this method [15]. Previous studies have reported on the success of using telephone follow-ups in a variety of settings for many types of patients. This method of follow-up has been used in patients that have received curative treatment for breast cancer, ovarian cancer, prostate cancer and malignant gliomas [6]. Telephone follow-up can help to reduce the burden of clinical follow-ups in order to maintain QOL in the advanced cancer
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patient population. This method of intervention provides the benefits of no clinical waiting time, traveling and/or associated costs [6,16]. Assessment tools can be used during the follow-up to monitor any changes. Seven of the studies identified in this review used the ESAS. The ESAS scale was given to patients during their initial consultation for referring to during the telephone follow-up interviews [8]. Bruera et al. found the ESAS to be a simple and useful method for assessment of symptom distress in palliative care patients [5,17]. One of the seven studies modified the ESAS to an 11-point categorical scale to use during follow-up. The modified version allowed for comparison of distress in patients across studies [5]. ESAS has previously been confirmed as a valid instrument [5]. Compared with the other assessment tools used by the studies during follow-up, ESAS covers various symptom domains while still retaining its brevity. The Brief Pain Inventory, although validated by Zeng et al. for use over the telephone in patients with bone metastases after receiving treatment, the pain rating in ESAS correlated with the ‘worst-pain’ item of the Brief Pain Inventory [11]. Poor accrual is a limitation of clinical trials involving advanced cancer patients. A study by the Radiation Therapy Oncology Group required patients with bone metastases to frequently visit the cancer center. It took 4 years to enroll slightly more than 1000 patients from 39 institutions, suggesting that most eligible patients had declined, rendering a bias in the sample population towards patients with better performance status that allowed them to attend the clinical follow-up [5]. The proportion of patients reported by Haddad et al. who reduced their dexamethasone dose after radiation was higher for patients who returned to the clinic compared with those who responded through telephone contact. This suggests the possibility that patients who came back to the clinic were in better condition, and thus needed less dexamethasone [4]. Studies with this bias are difficult to generalize to those patients with poor performance status due to the uncertainty in the extent to which the results are applicable to both those with better performance status and those with poor performance status. In 2011, Lien et al. published findings on patient accrual in palliative research studies at the Rapid Response Radiotherapy Program after implementing changes to recruitment strategies, such as the switch towards telephone interviews.
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Table 2. Follow-up rates of patients in the studies. Study (year)
Follow-up
Week 1
Week 2
Week 4
Week 8
Week 12
Chow et al. (2005)
Relation to total patients Relation to surviving patients
54.7%
50.2%
50.1%
38.8%
33.1%
55.8%
52.9%
56.6%
51.0%
48.2%
Relation to total patients Relation to surviving patients
62%
62%
57%
44%
40%
63%
67%
68%
63%
66%
Relation to total patients Relation to surviving patients
47.2%
47.2%
50.0%
56.8%
Haddad et al. (2003)
Relation to total patients
25%†
45%
Follwell et al. (2009)
Relation to total patients Relation to surviving patients
82.0%
58.7%
82.6%
62.9%
Chow et al. (2001)
Dixon et al. (2010)
Other (6, 9 or 10 months)
Ref. [8]
[5]
[6]
[4] [12]
[13]
Bruera et al. (2001)
Relation to total patients
Fairchild et al. (2009)
Relation to total patients
72%
[9]
Pituskin et al. (2010)
Relation to total patients Relation to surviving patients
40%
[10]
Kornblith et al. (2006)‡
Zeng et al. (2011)
Cox et al. (2008)
58.2%
34.5%
43%
Relation to total patients Relation to surviving patients Relation to week 4 partial data Relation to the number of patients with at least partial data available for the follow-up week
38.6–69.3%
[14]
42.4–74.4% 75%
61%
50%
75%
81%
80%
Relation to total patients
[11]
[3]
92.9%
This percentage represents the number of patients who were contacted only at week 1, not the total percentage of patients that were successfully contacted at week 1. Patients included in the week 4 follow-up were also successfully contacted at week 1. ‡ Patients were followed up monthly; however, the percentage of successful evaluations was recorded for month 6 and month 9 only. †
After research changes were made, the number of nonaccrued patients decreased from 85.7 to 51.9%. Despite the 33.8% improvement, the majority of patients are still not enrolled [2]. Studies selected for review, with the exception of one that consisted of multiple follow-up intervals [6], showed an overall decrease in the
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number of successful patients at the last follow-up [4,5,8,11–14]. Follwell et al. noticed that they achieved their feasibility target during week 1 but not at month 1 [12]. Patients who remain are likely to be those with better outcomes, as many drop out due to death, or are too ill. However, attrition can also be due to
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less severe symptomatology at baseline rather than poor clinical status, causing patients to perceive a symptom follow-up study as irrelevant in their situation [12]. Thus, it is difficult to capture a representative sample group that is applicable to advanced cancer patients as a whole. In order to maximize patient compliance, additional efforts need to be made. Lien et al. suggested implementing various strategies, such as the involvement of family and caregivers throughout the informed consent and data collection processes, use of concise assessments, accounting for attrition in sample sizes and the use of study marketing to increase awareness of current studies [2]. Haddad et al. suggested using a combined follow-up strategy of clinic and telephone contacts to target different patient populations [4]. Participants of a study on advanced ovarian cancer, reported by Lydon et al., were asked to consider alternative approaches to follow-up care, including telephone follow-up. Some patients felt it would be an appropriate alternative with practical advantages, such as less need to rely on family and friends to bring them to hospital clinics. However, some patients were concerned how examinations would be organized if they were followed up by telephone. Another concern was the failure to detect distress or concern if consultations were not face-to-face. In response to the concerns, health professionals felt that this method of consultation could be acceptable if tests, for example CA 125, were conducted at a local hospital and results were sent to hospital consultants [18]. Cox et al. used telephone follow-up to discuss patients’ recent blood test results from the CA 125 test in addition to assessing current symptoms, protocols for care, information, advice, coping strategies and support networks. At the end of the 10‑month period, an evaluation of the experience and satisfaction with the follow-up were recorded. Patients were asked to rate the support they received during the telephone follow-up on a scale of one (‘dreadful’) to ten (‘excellent’). The mean score was 8.24. Of the patients who answered the question on preference of follow-up, 73% preferred telephone appointments. Two main advantages were cited by the patient: first, the relationship and discussions between the patient and the nurse; and second, the convenience of having follow-up appointments over the phone rather than having to attend the clinic [3]. Patients in a study by Dixon et al. reported all positive feedback regarding the method of
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follow-up, including strong appreciation for the calls and the care received [6]. Kornblith et al. compared the significance of monthly telephone monitoring in addition to educational material versus educational material alone. Both patient groups were evaluated using the same assessment tools at 6 and 9 months. The authors concluded that the frequent telephone monitoring at monthly intervals significantly reduced patients’ anxiety and depression more than those in the educational material arm alone [14]. This study showed that concerns raised by patients about the failure to detect distress over the telephone could be addressed. The reviewed studies varied with the health professional member responsible for conducting telephone follow-ups with the patient. Depending on the site of accrual in these studies, the follow-up was performed by a trained research assistant, an advanced practice nurse/specialist nurse or a radiation therapist. Training of the individual conducting the telephone calls is required in order to conduct the follow-up, which may require additional time and cost. A study published by Beaver et al. compared the economic evaluation of hospital and telephone follow-up after treatment of breast cancer. The authors determined that the cost of nurse-led telephone follow-up was higher than that of hospital-based care due to longer telephone consultations and the frequent use of staff and training. Having trained research personnel conduct the follow-ups in place of nurses or radiation therapists would be one strategy to reduce this cost. However, there are reduced travel costs for the patient, as well as reduced burden on busy hospital clinics [19]. Limitations were present when comparing these particular studies. Only two of the studies directly compared the effectiveness of using telephone follow-ups by separating the sample population into two groups, one group having received the telephone follow-up and the other not [11,14]. The other studies, however, compared their results from telephone contact with previous published literature on clinical follow-up by other authors. Due to the differences in methodology when conducting the follow-up, this may affect the number of people who are successfully contacted, making it difficult to accurately compare the results. More studies should consider conducting a trial in which one group receives telephone follow-up and the other receives hospital follow-up while maintaining the same methodology otherwise. All articles included
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in this review were limited to only English language studies, thus excluding articles that may be relevant. Future reviews should consider examining studies in other languages to include all that are relevant. Previous review articles and editorials were not included; however, the reference lists were examined for studies that met the eligibility criteria for this literature review. Articles were excluded if the patient population contained only one primary cancer site. This ineligibility criteria was enforced in order to have a better representation of the advanced cancer population. This review compiles the outcomes of various studies involving the use of telephone follow-up in order to assess the benefits or consequences of this method as an alternative to in-hospital followups. This review illustrates that follow-ups at the 4-week interval should be considered. Most of the studies showed that a percentage of patients were still able to be contacted after the 4 weeks. The ESAS was the most common assessment tool used during the telephone follow-up. The studies utilizing ESAS were successful in obtaining information from patients who remained on the study. Future studies implementing telephone follow-up calls should consider the use of the ESAS assessment tool, as well as attempt to contact the patient at 4 weeks. Although telephone-based follow-up may not lead to cost or salary savings, this is an appropriate alternative to traditional in-hospital
visits when assessing symptom palliation. This strategy can better maintain QOL for the patient by reducing the burden of traveling and other factors associated with clinical follow-ups. Clinical trials can also benefit from a more representative sample of the entirety of advanced cancer patients. Palliative care is a field that is continually changing in order to improve the care of terminally ill patients. In 5–10 years, healthcare professionals addressing the care of terminally ill cancer patients will have a better understanding and incorporation of telephone follow-up as more studies arise. The telephone follow-up approach will be more standardized than current follow-up strategies and schedules, like those assessed in this review. The telephone follow-up approach may be best when used together with other approaches to prevent attrition. Financial & competing interests disclosure Tha authors thank the generous support of the Bratty Family Fund, the Michael and Karyn Goldstein Cancer Research Fund, the Joseph and Silvana Melara Cancer Research Fund and the Ofelia Cancer Research Fund. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. No writing assistance was utilized in the production of this manuscript.
Executive summary Background ■■ Telephone interviews have previously been conducted to determine whether symptoms had improved following treatment, to monitor distress and patient satisfaction, to provide information and advice, and to help the patient with coping strategies. ■■ The purpose of this review is to assess the use of telephone follow-up in place of clinical follow-up in the palliative care setting. Information about the utility, effectiveness and attrition rates will be discussed. Methods ■■ A systematic search was conducted on Medline, Embase, the Cochrane Central Register of Controlled Trials and CINAHL. Results ■■ Eleven studies were identified to be relevant, with the study cohorts obtained from outpatient radiotherapy clinics or multidisciplinary symptom control clinics. ■■ The Edmonton Symptom Assessment System was the most commonly used assessment tool used during telephone follow-up. A variety of other assessment tools were also used among the studies. ■■ A variety of follow-up schedules were implemented; however, the most common follow-up was conducted at week 4. Discussion ■■ Telephone follow-up allows for greater representation of advanced cancer population since those with poor performance status will be more inclined to remain in contact with healthcare professionals without the burden of clinical visits. ■■ Attrition rate was still present in the use of telephone follow-ups in place of in hospital visits. ■■ Alternative approaches to follow-up should also be implemented, together with the telephone approach, in order to improve successful patient contact and maintain patients’ quality of life.
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follow-up led by a radiation therapist: experience in a multidisciplinary bone metastases clinic. J. Med. Imag. Radiat. Sci. 41, 175–179 (2010).
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Lien K, Zeng L, Bradley N et al. Poor accrual in palliative research studies: an update from the rapid response radiotherapy program. World J. Oncol. 2, 217–224 (2011).
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Cox A, Bull E, Cockle-Hearne J, Knibb W, Potter C, Faithfull S. Nurse led telephone follow up in ovarian cancer: a psychosocial perspective. Eur. J. Oncol. Nurs. 12, 412–417 (2008).
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validation study. Pain Res. Treat. 2011, 601720 (2011). 12 Follwell M, Burman D, Le LW et al. Phase II
study of an outpatient palliative care intervention in patients with metastatic cancer. J. Clin. Oncol. 27, 206–213 (2009). 13 Bruera E, Michaud M, Vigano A, Neumann
CM, Watanabe S, Hanson J. Multidisciplinary symptom control clinic in a cancer center: a retrospective study. Support Care Cancer 9, 162–168 (2001). 14 Kornblith AB, Dowell JM, Herndon JE 2nd
et al. Telephone monitoring of distress in patients aged 65 or older with advanced stage cancer. Cancer 107, 2706–2714 (2006). 15 Brada M. Is there a need to follow-up cancer
patients? Eur. J. Cancer 31A(5), 655–657 (1995). 16 Godfrey K. Telephone follow-up can meet
patients’ needs. Cancer Nurs. Pract. 7, 14 (2008). 17 Bruera E, Kuehn N, Miller MJ, Selmser P,
Macmillan K. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J. Palliat. Care 7, 6–9 (1991). 18 Lydon A, Beaver K, Newbery C,
Wray J. Routine follow-up after treatment for ovarian cancer in the United Kingdom (UK): patient and health professional views. Eur. J. Oncol. Nurs. 13, 336–343 (2009). 19 Beaver K, Hollingworth W, McDonald R
et al. Economic evaluation of a randomized clinical trial of hospital versus telephone follow-up after treatment for breast cancer. Br. J. Surg. 96, 1406–1415 (2009).
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The utilization of telephone follow-up in the advanced cancer population: a review of the literature Background: Palliative cancer patients often require clinic or hospital follow-up after any treatment intervention they may have received. This is typically done in person at either a hospital or a clinic. In these advanced cancer patients, this may be burdensome and result in attrition. Telephone follow-up is becoming more frequently used as an adjunct to clinical follow-up. It can be conducted for both clinical trials, as well as interventional purposes. The purpose of this study was to review the literature and examine the utility and effectiveness of telephone follow-up in the advanced cancer population. Methods: A literature search was conducted on Medline (1980 – April week 4 2012), Embase (1980 – week 17 2012), the Cochrane Central Register of Controlled Trials (April 2012) and CINAHL (1981–July 31 2012). Results: A total of 11 studies were identified that were published between 2001 and 2011. All studies were in the clinical trial setting. Studies that utilized telephone follow-up in the advanced cancer population, as well as studies that compared the feasibility of telephone follow-up with hospital follow-up, were included in this review. Follow-up at week 4 (month 1) was the most common interval for patient contact. Information collected during the contact varied with the study; however, the most commonly used tool was the Edmonton Symptom Assessment System. Other information included analgesic diary, patient feedback, satisfaction with the care and post-treatment side effects, along with a variety of quality of life questionnaires. Some studies provided information to the patient about protocols for care, advice and coping strategies. Attrition was common even with the use of telephone contact in place of clinical follow-up. Conclusion: Telephone follow-up is a feasible alternative to traditional hospital followups for assessment of symptom palliation. There are fewer burdens on the patient, allowing for a better maintenance of quality of life and lower rates of attrition in clinical trials. Patients had an overall positive opinion of the use of this alternative approach with no common disadvantages. A combination of follow-up strategies, such as clinic follow-up and telephone contact for those not attending, may result in a more comprehensive assessment.
Michelle Zhou1, Lori Holden*1, Gillian Bedard1, Liang Zeng1, Henry Lam1, Dominic Chu1, Nicholas Lao1, Natalie Lauzon1 & Edward Chow1 Department of Radiation Therapy, Odette Cancer Centre, Sunnybrook Health Sciences Centre, 2075 Bayview Avenue, Toronto, ON, M4N 3M5, Canada *Author for correspondence: Tel.: +1 416 480 5000 ext. 7044 Fax: +1 416 480 4672 [email protected] 1
KEYWORDS: advanced cancer n clinical trials n review n telephone follow-up
Advanced cancer patients are often polysymptomatic, with shorter life expectancy and decreased quality of life (QOL) being associated with the illness. Treatment for this population shifts from curative to palliative, focusing on relieving symptoms and managing complications, and improving QOL [1,2]. Patient follow-up clinics allow for the monitoring of patients post-treatment for their cancer, and for the purposes of clinical trials, they allow for continued data collection [3]. The assessment of the treatment outcomes and associated sequelae is dependent on information obtained from the patient, such as their clinical status, toxicities, symptom improvement/deterioration, performance status and QOL [4]. Clinical trials are important for driving advances in treatment options and delivery. However, patients with advanced cancer often have
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limited life expectancy and may be adverse to any additional burdens these trials could impose, which consequently affects their willingness to participate [2,5,6]. As a result, clinical trials are often closed prematurely due to difficulty in reaching the appropriate sample size [2]. In some cases, although the sample size may be reached, the data quality may suffer from a high attrition rate [2]. Patient follow-up, therefore, is difficult for palliative patients in both clinical practice and in research trials [4,5]. Many approaches have been taken to reduce symptom, emotional and QOL burden on palliative care patients. One of the methods includes the shortening of QOL questionnaires, such as the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 to the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative specifically for patients with advanced cancer [7]. Questionnaires that are administered to patients with advanced cancer and limited life expectancy need to be brief in order to reduce the burden, while still capturing the relevant issues [7]. Telephone follow-up calls can also reduce the burden and disruption felt by patients by allowing them to remain at home with their family and caregivers during the follow-up. Unlike clinic follow-up, patients can avoid traveling but still be provided with a method of care. For staff, benefits are also seen with reduced workload directly in the clinic [6]. Telephone interviews have previously been conducted to determine whether symptoms had improved following treatment, to monitor distress and patient satisfaction, to provide information and advice, and to help the patient with coping strategies [3–6,8–14]. Telephone followups may be conducted for clinical trials, as well as for interventional purposes. The main objective of this study is to review the use of telephone follow-up in place of clinical follow-ups in the palliative care setting. Information about the utility, effectiveness and attrition rates will be discussed. Methods
A systematic search was conducted using the OvidSP platform on the following databases: Medline (1980–April week 4 2012), Embase (1980–week 17 2012), and the Cochrane Central Register of Controlled Trials (April 2012). A search was also conducted using the EBSCO platform on the CINAHL database (1981– 31
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July 2012). The search was conducted using the search terms “Neoplasm Metastasis+”, “palliative care” or “terminal care” and “prospective studies” or “after care” coupled with “telephone”. Articles were selected based on title and abstract and then taken for further examination. Studies that utilized telephone follow-up in the advanced cancer population, as well as studies that compared the feasibility of telephone follow-up with hospital follow-up have been included in this review. Studies were included if they contained adult human subjects with advanced cancer receiving palliative or terminal care. Studies were considered eligible if the time of follow-up and the number of successful follow-ups were indicated. During screening of the literature search, publication types were not limited as long as the inclusion and exclusion criteria were met. Articles were also restricted to those written in English only. References for these articles were also explored for further relevant literature along with studies that cited the selected articles. Primary outcomes of interest were rates of attrition and success at each follow-up period. Along with this, any detailed analysis of the telephone follow-up experience was collected along with stated advantages/disadvantages for individual studies. M Zhou and L Zeng independently identified articles of potential interest. D Chu and N Lao checked the accuracy of the collected data. Descriptive statistics summarized the findings. Results ■■ Study characteristics
A total of 11 studies [3–6,8–14] were identified, including sample sizes ranging from 43 to 830 patients (Table 1). Many of the studies recruited patients from an outpatient radiotherapy clinic [4–6,8–11], while others contained a sample cohort from a palliative multidisciplinary symptom control clinic [12,13]. Two studies, however, did not specify the actual location in which patients were seen and the consent process had occurred [3,14]. Of the 11 studies, five specifically examined the feasibility of using telephone follow-ups in place of clinical follow-up in the palliative setting [3–6,8]. A study by Follwell et al. examined whether telephone follow-up at 1 week or 1 month would be more appropriate for measuring the effectiveness of outpatient palliative care [12]. Although the objectives of the remaining six studies did not include determining the feasibility of telephone follow-up calls, the use and results of this follow-up method were reported [9–11,13,14].
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Table 1. Details of studies involving telephone follow-up in the advanced cancer setting. Study (year)
Sample population
Age (years)
Assessment tools at follow-up
Performance status
Personnel Timing of conducting follow-ups follow-ups
Chow et al. (2005)
January 1999–December 2001 830 metastatic outpatients receiving radiotherapy for symptom palliation at the RRRP clinic (53% male and 47% female)
Median: 69 Range: 24–93
ESAS and analgesic diary
KPS Median: 60 Range: 10–90
Trained research assistant
Weeks 1, 2, 4, 8 and 12 after radiotherapy
[8]
Chow et al. (2001)
January 1999–August 1999 190 metastatic outpatients receiving radiotherapy for symptom palliation at the RRRP clinic (51% male and 49% female)
Median: 68 Range: 39–89
Modified ESAS and analgesic diary
KPS Median: 60 Range: 10–90
Trained research assistant
Weeks 1, 2, 4, 8 and 12 after radiotherapy
[5]
Dixon et al. (2010)
2 February 2009–20 July 2009 53 bone metastatic patients receiving radiotherapy at the RAPRP clinic (72% male and 28% female)
Mean: 69 ESAS, patient feedback
N/A
Radiation therapist
Weeks 1 and 4
[6]
Haddad et al. (2003)
1 July 2001–31 January 2002 56 brain metastatic patients treated in the Palliative Oncology Program, an outpatient radiotherapy clinic (50% male and 50% female)
Mean: 62.2 Range: 35–83
Standard data sheet about overall symptoms, side effects, radiotherapy and dexamethasone dosage
ECOG Mean (SD): 1.68 (0.8)
Advanced practice nurse or radiation therapist
Weeks 1 and 4
[4]
Follwell et al. (2009)
5 July 2006–5 April 2007 150 metastatic patients from the Outpatient Palliative Care Clinic (51% male and 49% female)
Median: 60 Range: 31–90
ESAS and Family Satisfaction with Advanced Cancer Care
ECOG score: 0: 6%, 1: 35%, 2: 34%, 3: 23%, 4: 2%
Weeks 1 and 4
[12]
Bruera et al. (2001)
July 1996–October 1997 110 advanced cancer patients at a multidisciplinary symptom control clinic (55% male and 45% female)
Mean: ESAS and at week 2, 58.93 satisfaction survey SD: 12.76
Week 2 satisfaction conducted by a clerk
Weeks 2 and 4 after first SCC visit
[13]
Fairchild et al. (2009)
August–December 2006 43 patients with bone metastases receiving radiotherapy at the RAPRP clinic (69% male and 31% female)
Median: 69.9 Range: 39–86
ESAS, post-treatment KPS and PPS side effects, Median: 70 consideration Range: 20–90 to revisit and recommendation
Nurse Weeks 1 practitioner and 4
Pituskin et al. (2010)
1 January–31 December 2007 57 outpatient bone metastatic patients attended the RAPRP clinic (62% male and 38% female)
Median: 70 Range: 40–88
ESAS
KPS Median: 60 Range: 10–90
Week 4
Ref.
[9]
[10]
The demographics for these patients were those that followed-up at 6 months; baseline demographics were not available. Total number of patients recruited was not stated in this study. All information was given in relation to the number of patients with at least partial data available. § The population for this study did not include all palliative patients. Patients in this cohort had stage II–IV ovarian cancer. BPI: Brief Pain Inventory; ECOG: Eastern Cooperative Oncology Group; EORTC: European Organization for Research and Treatment of Cancer; ESAS: Edmonton Symptom Assessment System; HADS: Hospital Anxiety and Depression Scale; KPS: Karnofsky Performance Scale; MOS: Medical Outcomes Social Support Survey; PPS: Palliative Performance Scale; QLQ: Quality of Life Questionnaire; RAPRP: Rapid Access Palliative Radiotherapy Program; RRRP: Rapid Response Radiotherapy Program; SD: Standard deviation. † ‡
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Table 1. Details of studies involving telephone follow-up with advanced cancer setting (cont.). Study (year)
Sample population
Age (years)
Assessment tools at follow-up
Performance status
Personnel Timing of conducting follow-ups follow-ups
Ref.
Kornblith September 1998–January 2003 et al. 189 advanced cancer patients (2006)† randomized and evaluated at baseline to receive telephone monitoring along with educational materials, or educational materials alone (52% male and 48% female)
Mean: 73 Monthly followSD: 5.7 ups: HADS, EORTC physical symptom items, MOS social support survey items Baseline, 6- and 9-month evaluation: EORTC QLQ-C30, HADS, MOS social support
KPS 90–100% 58% 70–89%: 32% 50–69%: 1% Unknown: 9%
Centralized, trained telephone monitors
Monthly for 6 months Evalutated at month 6 and month 9
[14]
Zeng et al. (2011)‡
Week 4: BPI Median: 65 Range: 30–89 Week 8: Median: 66 Range: 30–88 Week 12: Median: 64 Range: 30–88
KPS Week 4: Mean (SD): 71.9 (13.1) Median (range): 70 (30–90) Week 8: Mean (SD): 72.6 (11.8) Median (range): 70 (40–90) Week 12: Mean (SD): 72.5 (12.5) Median (range): 70 (40–90)
Trained research assistant
Weeks 4, 8 and 12
[11]
Specialist nurse
Every 3 months for 10 months
212 (week 4), 159 (week 8) and 133 (week 12) patients treated with radiation in the lower back at the RRRP clinic with at least partial data Week 4: 55% male and 45% female Week 8: 54% male and 46% female Week 12: 58% male and 42% female
Cox et al. 52 women with stage II– (2008)§ IV stable ovarian cancer consented and were called (100% female)
Mean: 62 Patients given blood test results and discussed them, current symptoms assessed, protocols for care consulted, information, advice and coping strategies provided
[3]
The demographics for these patients were those that followed-up at 6 months; baseline demographics were not available. Total number of patients recruited was not stated in this study. All information was given in relation to the number of patients with at least partial data available. § The population for this study did not include all palliative patients. Patients in this cohort had stage II–IV ovarian cancer. BPI: Brief Pain Inventory; ECOG: Eastern Cooperative Oncology Group; EORTC: European Organization for Research and Treatment of Cancer; ESAS: Edmonton Symptom Assessment System; HADS: Hospital Anxiety and Depression Scale; KPS: Karnofsky Performance Scale; MOS: Medical Outcomes Social Support Survey; PPS: Palliative Performance Scale; QLQ: Quality of Life Questionnaire; RAPRP: Rapid Access Palliative Radiotherapy Program; RRRP: Rapid Response Radiotherapy Program; SD: Standard deviation. † ‡
■■ Assessment tools at follow-up
Seven studies utilized the Edmonton Symptom Assessment System (ESAS) during the telephone follow-up [5,6,8–10,12,13]. This assessment consists of nine visual analog scales that assess pain, activity, nausea, depression, anxiety, drowsiness, appetite, sense of wellbeing and shortness of breath. Other assessment tools included: an analgesic diary [5,8], patient feedback [6,9,13], a patient-adapted
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version of the Family Satisfaction with Advanced Cancer Care [12], a standard data sheet to collect overall symptoms, side effects of radiotherapy and dexamethasone dosage [4], and standardized tools, such as the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30, the Hospital Anxiety and Depression Scale, Medical Outcomes Study Social Support Survey and Brief Pain Inventory.
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In one study by Cox et al., patients were given the results of their blood test during the telephone follow-up and discussed any implications of the results. A symptom assessment was also conducted and protocols for appropriate care for the reported symptoms were discussed. Patients were then provided with information, advice, coping and support strategies in physical, psychological and social domains [3]. ■■ Follow-up intervals
Eleven studies were included for discussion and analysis. Table 1 outlines the demographic information for each of these studies. As shown on Table 1, six studies included follow-ups at a minimum of weeks 1 and 4, with the remaining studies including follow-ups at a minimum of week 2 or monthly. In seven papers, patient follow-ups were conducted by medical personnel (four with either a radiation therapist or nurse) and three by trained research staff. The remaining papers reported follow-ups being conducted by ‘clerks’ (two) or were unreported (two). All but two papers reported using a prevalidated assessment tool, with the majority using the ESAS, in order to collect and report the data. Table 2 illustrates the time interval in which patients were contacted for follow-up and data collection. Patient attrition was noted in all but one study [6]. Table 1 shows the different degrees to which patient contacts were successful at different time intervals. As eluded to above, patient contact was at least attempted at week 1 in five papers, week 2 in three papers and at week 4 in nine papers. The specific rates for these time frames, as well as the monthly time frames can be seen in Table 2. Discussion
Follow-up of cancer patients after treatment typically consists of a brief history, examination, tests and reassurance. Basic clinical information can be gathered over the phone while contact and surveillance based on clinical history can be maintained through this method [15]. Previous studies have reported on the success of using telephone follow-ups in a variety of settings for many types of patients. This method of follow-up has been used in patients that have received curative treatment for breast cancer, ovarian cancer, prostate cancer and malignant gliomas [6]. Telephone follow-up can help to reduce the burden of clinical follow-ups in order to maintain QOL in the advanced cancer
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patient population. This method of intervention provides the benefits of no clinical waiting time, traveling and/or associated costs [6,16]. Assessment tools can be used during the follow-up to monitor any changes. Seven of the studies identified in this review used the ESAS. The ESAS scale was given to patients during their initial consultation for referring to during the telephone follow-up interviews [8]. Bruera et al. found the ESAS to be a simple and useful method for assessment of symptom distress in palliative care patients [5,17]. One of the seven studies modified the ESAS to an 11-point categorical scale to use during follow-up. The modified version allowed for comparison of distress in patients across studies [5]. ESAS has previously been confirmed as a valid instrument [5]. Compared with the other assessment tools used by the studies during follow-up, ESAS covers various symptom domains while still retaining its brevity. The Brief Pain Inventory, although validated by Zeng et al. for use over the telephone in patients with bone metastases after receiving treatment, the pain rating in ESAS correlated with the ‘worst-pain’ item of the Brief Pain Inventory [11]. Poor accrual is a limitation of clinical trials involving advanced cancer patients. A study by the Radiation Therapy Oncology Group required patients with bone metastases to frequently visit the cancer center. It took 4 years to enroll slightly more than 1000 patients from 39 institutions, suggesting that most eligible patients had declined, rendering a bias in the sample population towards patients with better performance status that allowed them to attend the clinical follow-up [5]. The proportion of patients reported by Haddad et al. who reduced their dexamethasone dose after radiation was higher for patients who returned to the clinic compared with those who responded through telephone contact. This suggests the possibility that patients who came back to the clinic were in better condition, and thus needed less dexamethasone [4]. Studies with this bias are difficult to generalize to those patients with poor performance status due to the uncertainty in the extent to which the results are applicable to both those with better performance status and those with poor performance status. In 2011, Lien et al. published findings on patient accrual in palliative research studies at the Rapid Response Radiotherapy Program after implementing changes to recruitment strategies, such as the switch towards telephone interviews.
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Table 2. Follow-up rates of patients in the studies. Study (year)
Follow-up
Week 1
Week 2
Week 4
Week 8
Week 12
Chow et al. (2005)
Relation to total patients Relation to surviving patients
54.7%
50.2%
50.1%
38.8%
33.1%
55.8%
52.9%
56.6%
51.0%
48.2%
Relation to total patients Relation to surviving patients
62%
62%
57%
44%
40%
63%
67%
68%
63%
66%
Relation to total patients Relation to surviving patients
47.2%
47.2%
50.0%
56.8%
Haddad et al. (2003)
Relation to total patients
25%†
45%
Follwell et al. (2009)
Relation to total patients Relation to surviving patients
82.0%
58.7%
82.6%
62.9%
Chow et al. (2001)
Dixon et al. (2010)
Other (6, 9 or 10 months)
Ref. [8]
[5]
[6]
[4] [12]
[13]
Bruera et al. (2001)
Relation to total patients
Fairchild et al. (2009)
Relation to total patients
72%
[9]
Pituskin et al. (2010)
Relation to total patients Relation to surviving patients
40%
[10]
Kornblith et al. (2006)‡
Zeng et al. (2011)
Cox et al. (2008)
58.2%
34.5%
43%
Relation to total patients Relation to surviving patients Relation to week 4 partial data Relation to the number of patients with at least partial data available for the follow-up week
38.6–69.3%
[14]
42.4–74.4% 75%
61%
50%
75%
81%
80%
Relation to total patients
[11]
[3]
92.9%
This percentage represents the number of patients who were contacted only at week 1, not the total percentage of patients that were successfully contacted at week 1. Patients included in the week 4 follow-up were also successfully contacted at week 1. ‡ Patients were followed up monthly; however, the percentage of successful evaluations was recorded for month 6 and month 9 only. †
After research changes were made, the number of nonaccrued patients decreased from 85.7 to 51.9%. Despite the 33.8% improvement, the majority of patients are still not enrolled [2]. Studies selected for review, with the exception of one that consisted of multiple follow-up intervals [6], showed an overall decrease in the
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number of successful patients at the last follow-up [4,5,8,11–14]. Follwell et al. noticed that they achieved their feasibility target during week 1 but not at month 1 [12]. Patients who remain are likely to be those with better outcomes, as many drop out due to death, or are too ill. However, attrition can also be due to
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less severe symptomatology at baseline rather than poor clinical status, causing patients to perceive a symptom follow-up study as irrelevant in their situation [12]. Thus, it is difficult to capture a representative sample group that is applicable to advanced cancer patients as a whole. In order to maximize patient compliance, additional efforts need to be made. Lien et al. suggested implementing various strategies, such as the involvement of family and caregivers throughout the informed consent and data collection processes, use of concise assessments, accounting for attrition in sample sizes and the use of study marketing to increase awareness of current studies [2]. Haddad et al. suggested using a combined follow-up strategy of clinic and telephone contacts to target different patient populations [4]. Participants of a study on advanced ovarian cancer, reported by Lydon et al., were asked to consider alternative approaches to follow-up care, including telephone follow-up. Some patients felt it would be an appropriate alternative with practical advantages, such as less need to rely on family and friends to bring them to hospital clinics. However, some patients were concerned how examinations would be organized if they were followed up by telephone. Another concern was the failure to detect distress or concern if consultations were not face-to-face. In response to the concerns, health professionals felt that this method of consultation could be acceptable if tests, for example CA 125, were conducted at a local hospital and results were sent to hospital consultants [18]. Cox et al. used telephone follow-up to discuss patients’ recent blood test results from the CA 125 test in addition to assessing current symptoms, protocols for care, information, advice, coping strategies and support networks. At the end of the 10‑month period, an evaluation of the experience and satisfaction with the follow-up were recorded. Patients were asked to rate the support they received during the telephone follow-up on a scale of one (‘dreadful’) to ten (‘excellent’). The mean score was 8.24. Of the patients who answered the question on preference of follow-up, 73% preferred telephone appointments. Two main advantages were cited by the patient: first, the relationship and discussions between the patient and the nurse; and second, the convenience of having follow-up appointments over the phone rather than having to attend the clinic [3]. Patients in a study by Dixon et al. reported all positive feedback regarding the method of
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follow-up, including strong appreciation for the calls and the care received [6]. Kornblith et al. compared the significance of monthly telephone monitoring in addition to educational material versus educational material alone. Both patient groups were evaluated using the same assessment tools at 6 and 9 months. The authors concluded that the frequent telephone monitoring at monthly intervals significantly reduced patients’ anxiety and depression more than those in the educational material arm alone [14]. This study showed that concerns raised by patients about the failure to detect distress over the telephone could be addressed. The reviewed studies varied with the health professional member responsible for conducting telephone follow-ups with the patient. Depending on the site of accrual in these studies, the follow-up was performed by a trained research assistant, an advanced practice nurse/specialist nurse or a radiation therapist. Training of the individual conducting the telephone calls is required in order to conduct the follow-up, which may require additional time and cost. A study published by Beaver et al. compared the economic evaluation of hospital and telephone follow-up after treatment of breast cancer. The authors determined that the cost of nurse-led telephone follow-up was higher than that of hospital-based care due to longer telephone consultations and the frequent use of staff and training. Having trained research personnel conduct the follow-ups in place of nurses or radiation therapists would be one strategy to reduce this cost. However, there are reduced travel costs for the patient, as well as reduced burden on busy hospital clinics [19]. Limitations were present when comparing these particular studies. Only two of the studies directly compared the effectiveness of using telephone follow-ups by separating the sample population into two groups, one group having received the telephone follow-up and the other not [11,14]. The other studies, however, compared their results from telephone contact with previous published literature on clinical follow-up by other authors. Due to the differences in methodology when conducting the follow-up, this may affect the number of people who are successfully contacted, making it difficult to accurately compare the results. More studies should consider conducting a trial in which one group receives telephone follow-up and the other receives hospital follow-up while maintaining the same methodology otherwise. All articles included
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in this review were limited to only English language studies, thus excluding articles that may be relevant. Future reviews should consider examining studies in other languages to include all that are relevant. Previous review articles and editorials were not included; however, the reference lists were examined for studies that met the eligibility criteria for this literature review. Articles were excluded if the patient population contained only one primary cancer site. This ineligibility criteria was enforced in order to have a better representation of the advanced cancer population. This review compiles the outcomes of various studies involving the use of telephone follow-up in order to assess the benefits or consequences of this method as an alternative to in-hospital followups. This review illustrates that follow-ups at the 4-week interval should be considered. Most of the studies showed that a percentage of patients were still able to be contacted after the 4 weeks. The ESAS was the most common assessment tool used during the telephone follow-up. The studies utilizing ESAS were successful in obtaining information from patients who remained on the study. Future studies implementing telephone follow-up calls should consider the use of the ESAS assessment tool, as well as attempt to contact the patient at 4 weeks. Although telephone-based follow-up may not lead to cost or salary savings, this is an appropriate alternative to traditional in-hospital
visits when assessing symptom palliation. This strategy can better maintain QOL for the patient by reducing the burden of traveling and other factors associated with clinical follow-ups. Clinical trials can also benefit from a more representative sample of the entirety of advanced cancer patients. Palliative care is a field that is continually changing in order to improve the care of terminally ill patients. In 5–10 years, healthcare professionals addressing the care of terminally ill cancer patients will have a better understanding and incorporation of telephone follow-up as more studies arise. The telephone follow-up approach will be more standardized than current follow-up strategies and schedules, like those assessed in this review. The telephone follow-up approach may be best when used together with other approaches to prevent attrition. Financial & competing interests disclosure Tha authors thank the generous support of the Bratty Family Fund, the Michael and Karyn Goldstein Cancer Research Fund, the Joseph and Silvana Melara Cancer Research Fund and the Ofelia Cancer Research Fund. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed. No writing assistance was utilized in the production of this manuscript.
Executive summary Background ■■ Telephone interviews have previously been conducted to determine whether symptoms had improved following treatment, to monitor distress and patient satisfaction, to provide information and advice, and to help the patient with coping strategies. ■■ The purpose of this review is to assess the use of telephone follow-up in place of clinical follow-up in the palliative care setting. Information about the utility, effectiveness and attrition rates will be discussed. Methods ■■ A systematic search was conducted on Medline, Embase, the Cochrane Central Register of Controlled Trials and CINAHL. Results ■■ Eleven studies were identified to be relevant, with the study cohorts obtained from outpatient radiotherapy clinics or multidisciplinary symptom control clinics. ■■ The Edmonton Symptom Assessment System was the most commonly used assessment tool used during telephone follow-up. A variety of other assessment tools were also used among the studies. ■■ A variety of follow-up schedules were implemented; however, the most common follow-up was conducted at week 4. Discussion ■■ Telephone follow-up allows for greater representation of advanced cancer population since those with poor performance status will be more inclined to remain in contact with healthcare professionals without the burden of clinical visits. ■■ Attrition rate was still present in the use of telephone follow-ups in place of in hospital visits. ■■ Alternative approaches to follow-up should also be implemented, together with the telephone approach, in order to improve successful patient contact and maintain patients’ quality of life.
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follow-up led by a radiation therapist: experience in a multidisciplinary bone metastases clinic. J. Med. Imag. Radiat. Sci. 41, 175–179 (2010).
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n
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Homsi J, Walsh D, Rivera N et al. Symptom evaluation in palliative medicine: patient report vs systematic assessment. Support Care Cancer 14, 444–453 (2006).
2
Lien K, Zeng L, Bradley N et al. Poor accrual in palliative research studies: an update from the rapid response radiotherapy program. World J. Oncol. 2, 217–224 (2011).
3
Cox A, Bull E, Cockle-Hearne J, Knibb W, Potter C, Faithfull S. Nurse led telephone follow up in ovarian cancer: a psychosocial perspective. Eur. J. Oncol. Nurs. 12, 412–417 (2008).
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Haddad P, Wilson P, Wong R, Williams D, Sharma N, Soban F. The success of data collection in the palliative setting – telephone or clinic follow-up? Support Care Cancer 11, 555–559 (2003). Compares whether telephone (cohort 1) or clinical follow-up (cohort 2) was more successful in obtaining data from patients. Chow E, Wong R, Connolly R et al. Prospective assessment of symptom palliation for patients attending a rapid response radiotherapy program: feasibility of telephone follow-up. J. Pain Symptom Manage. 22, 649–656 (2001). Assesses the use of telephone follow-up in patients with advanced cancer. Dixon W, Pituskin E, Fairchild A, Ghosh S, Danielson B. The feasibility of telephone
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This study assesses the use of telephone follow-up by radiation therapists in patients with advanced cancer.
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Groenvold M, Petersen MA, Aaronson NK et al. The development of the EORTC QLQC15-PAL: a shortened questionnaire for cancer patients in palliative care. Eur. J. Cancer 42, 55–64 (2006).
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Chow E, Fung KW, Bradley N, Davis L, Holden L, Danjoux C. Review of telephone follow-up experience at the rapid response radiotherapy program. Support Care Cancer 13, 549–553 (2005).
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Specifically reviews the use of telephone follow-up and compares results with previous studies to form a conclusion. Fairchild A, Pituskin E, Rose B et al. The rapid access palliative radiotherapy program: blueprint for initiation of a one-stop multidisciplinary bone metastases clinic. Support Care Cancer 17, 163–170 (2009).
10 Pituskin E, Fairchild A, Dutka J et al.
Multidisciplinary team contributions within a dedicated outpatient palliative radiotherapy clinic: a prospective descriptive study. Int. J. Radiat. Oncol. Biol. Phys. 78, 527–532 (2010). 11 Zeng L, Sahgal A, Zhang L et al. Patterns of
pain and functional improvement in patients with bone metastases after conventional external beam radiotherapy and a telephone
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validation study. Pain Res. Treat. 2011, 601720 (2011). 12 Follwell M, Burman D, Le LW et al. Phase II
study of an outpatient palliative care intervention in patients with metastatic cancer. J. Clin. Oncol. 27, 206–213 (2009). 13 Bruera E, Michaud M, Vigano A, Neumann
CM, Watanabe S, Hanson J. Multidisciplinary symptom control clinic in a cancer center: a retrospective study. Support Care Cancer 9, 162–168 (2001). 14 Kornblith AB, Dowell JM, Herndon JE 2nd
et al. Telephone monitoring of distress in patients aged 65 or older with advanced stage cancer. Cancer 107, 2706–2714 (2006). 15 Brada M. Is there a need to follow-up cancer
patients? Eur. J. Cancer 31A(5), 655–657 (1995). 16 Godfrey K. Telephone follow-up can meet
patients’ needs. Cancer Nurs. Pract. 7, 14 (2008). 17 Bruera E, Kuehn N, Miller MJ, Selmser P,
Macmillan K. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J. Palliat. Care 7, 6–9 (1991). 18 Lydon A, Beaver K, Newbery C,
Wray J. Routine follow-up after treatment for ovarian cancer in the United Kingdom (UK): patient and health professional views. Eur. J. Oncol. Nurs. 13, 336–343 (2009). 19 Beaver K, Hollingworth W, McDonald R
et al. Economic evaluation of a randomized clinical trial of hospital versus telephone follow-up after treatment for breast cancer. Br. J. Surg. 96, 1406–1415 (2009).
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