Patient Education and Counseling 97 (2014) 302–309
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Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Review
Do cancer helplines deliver benefits to people affected by cancer? A systematic review Tara Clinton-McHarg a, Christine Paul a,*, Allison Boyes a, Shiho Rose a, Paula Vallentine b, Lorna O’Brien b a b
Priority Research Centre for Health Behaviour, University of Newcastle and Hunter Medical Research Institute, Newcastle, Australia Cancer Council NSW, Sydney, Australia
A R T I C L E I N F O
A B S T R A C T
Article history: Received 12 March 2014 Received in revised form 5 September 2014 Accepted 10 September 2014
Objectives: To determine the: (1) proportion of studies that describe characteristics of helpline service delivery, compared to the proportion that report trials testing efficacy or effectiveness of helplines in changing user outcomes; (2) proportion of efficacy or effectiveness studies that meet EPOC criteria for methodological rigor; and (3) potential benefits of cancer helplines for people affected by cancer based on findings from rigorous efficacy or effectiveness trials. Methods: Electronic databases (Medline, PsycINFO, EMBASE and CINAHL) were searched to identify English-language studies describing original research published from 1991 to 2011. Results: Twenty-eight publications met the review inclusion criteria. From these studies, data on: the characteristics of cancer helpline users; call content; and user satisfaction, were extracted. The potential for helplines to improve the psychosocial outcomes of callers was examined for the three intervention trials. Conclusion: There is a lack of robust evidence regarding the level and types of benefits that cancer helplines may deliver to callers affected by cancer. Given increased emphasis on delivering best-practise supportive care, building the evidence base in this field may assist cancer helplines to increase their service uptake, reach, and benefit to callers. Practise implications: There is a need for more rigorous intervention-focussed studies in this field across a broader range of cancer populations. Future studies should focus on relevant patient-centred outcomes, such as improved knowledge and greater involvement in decision-making, while incorporating process measures to account for intervention fidelity and clinical performance. ß 2014 Elsevier Ireland Ltd. All rights reserved.
Keywords: Cancer Counselling Helpline Information service Patient education Psychosocial support systems Systematic review
Contents 1.
2.
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Prevalence of psychological distress and unmet needs among people affected by cancer 1.1. Interventions for reducing psychosocial morbidity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.2. 1.3. Establishment and evolution of cancer helplines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Potential benefits of cancer helplines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.4. Purpose of review . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.5. Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1. Design . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Search strategy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2. Inclusion and exclusion criteria . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3.
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* Corresponding author at: Priority Research Centre for Health Behaviour, Level 4, Hunter Medical Research Institute Building, University of Newcastle, Callaghan 2308, NSW, Australia. Tel.: +61 2 4042 0693; fax: +61 2 4042 0040. E-mail address: [email protected] (C. Paul). http://dx.doi.org/10.1016/j.pec.2014.09.004 0738-3991/ß 2014 Elsevier Ireland Ltd. All rights reserved.
T. Clinton-McHarg et al. / Patient Education and Counseling 97 (2014) 302–309
2.4.
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Data synthesis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Classification of publications by focus area . . . . . . . . . . . . . . . . . . 2.4.1. Classification of efficacy or effectiveness publications. . . . . . . . . . 2.4.2. Data extraction from rigorous efficacy or effectiveness trials . . . . 2.4.3. Results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Database search and publication exclusion . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1. Focus of original research. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2. Proportion of efficacy or effectiveness publications that met EPOC criteria 3.3. 3.4. Benefits of cancer helplines for people affected by cancer . . . . . . . . . . . . . . Discussion and conclusion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Summary of findings from included studies . . . . . . . . . . . . . . . . . . . . . . . . . 4.1. 4.2. Potential reasons for mixed study findings . . . . . . . . . . . . . . . . . . . . . . . . . . Limitations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3. Recommendations for future research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.4. Intervention rather than descriptive studies . . . . . . . . . . . . . . . . . 4.4.1. 4.4.2. Selection of appropriate outcomes of interest . . . . . . . . . . . . . . . . Focus on cancer populations with high unmet needs . . . . . . . . . . 4.4.3. Inclusion of process measures . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.4.4. Conclusion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.5. 4.6. Practise implications. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Acknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1. Introduction 1.1. Prevalence of psychological distress and unmet needs among people affected by cancer Cancer is the leading cause of disease-related burden worldwide [1–3]. A large proportion of people affected by cancer report psychosocial concerns with high levels of distress reported by: 25 to 62% of patients receiving treatment; up to 40% of cancer survivors [4,5]; and up to 60% of support persons caring for patients with advanced disease [6]. Large-scale studies of cancerspecific supportive care needs reveal that unmet needs for psychological help, information, and assistance with daily living activities are common amongst patients and survivors [7–10], while unmet needs related to financial support and relationships are frequently reported by support persons [11]. Addressing psychosocial morbidity in individuals affected by cancer is important due to its association with decreased social functioning, more intense physical symptoms, cognitive impairment, poor adherence to treatment, fewer health-promoting behaviours, and reduced length of life [12–15]. 1.2. Interventions for reducing psychosocial morbidity According to stress-coping theory, the way an individual responds to a stressful event (such as a cancer diagnosis) depends on how they perceive: (1) the level of burden associated with the event; and (2) the availability of resources to help them cope with that burden [16]. For this reason, research has generally focused on developing interventions which attempt to either alter cancer patients’ perceptions of their disease [17] or increase their ability to access resources [18]. Such interventions can be of either highor low-intensity. Using stepped care as a framework [19], intervention intensity can be defined according to criteria such as accessibility, mode of delivery, number of contacts, length of contact, extent of specialist involvement, and cost. In this context, a high-intensity intervention might include individualised therapy, such as cognitive behavioural therapy (CBT). CBT can require a high patient burden for participation [20], extensive time commitment [21], high costs [22], and is often limited by the accessibility or availability of trained therapists [23,24]. In contrast, a community-based telephone helpline represents a low-intensity intervention [25–27]. A strength of this approach is the ability to assist individuals who may be unable to receive
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traditional face-to-face supportive care due to geographical isolation [28] or poor physical health [29]. Telephone-based delivery of support also provides: anonymity to the caller; equity of access; and a cheaper alternative compared to face-to-face services [29]. 1.3. Establishment and evolution of cancer helplines Since its establishment in 1975, the Cancer Information Service in the United States has provided education and support to cancer patients, their family and friends, and health professionals via its telephone helpline service. Provision of uniform, toll-free numbers has improved accessibility, and technological advances has enabled streamlining of up-to-date information and coordinated referrals to other support networks [30]. The cancer helpline has evolved into an international model of care, operating across numerous countries [31], including the United Kingdom [28] and Australia [32]. The aim of the cancer helpline services is to provide callers with cancer-related emotional, informational and practical support from health professionals experienced in oncology [32,33]. Helpline staff do not engage in therapeutic counselling or offer individual medical advice, but instead provide information, reassurance and referral options to callers [34]. Despite these practical advantages, relatively little is known about whether cancer helplines actually deliver psychosocial benefits to people affected by cancer, and if so, what these benefits may be. 1.4. Potential benefits of cancer helplines Traditionally, the success of cancer helplines has been measured in terms of caller use, satisfaction, and acceptability. Satisfaction surveys [33–37] suggest that the majority of helpline callers are generally satisfied with the information they received, the way their call was managed, and the consultant’s knowledge and approach. While evidence of caller satisfaction and acceptability are important indicators of service delivery, these outcomes do not demonstrate whether cancer helplines are effecting a change in the callers’ psychosocial well-being. The types of psychosocial benefits a cancer helpline might be expected to confer to people affected by cancer include: reduced information needs and increased knowledge [34,38]; greater involvement in decision-making [39,40]; improved problem-solving skills, selfefficacy and empowerment [41,42]; and reduced psychological distress [43,44].
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1.5. Purpose of review
2.4. Data synthesis
Although it is assumed that cancer helplines deliver psychosocial benefits to people affected by cancer, no previous reviews have critically assessed the literature to identify what evidence-based studies of the benefits of cancer helplines exist, or the methodological quality of such studies. This review aims to critically examine original research regarding cancer helplines to identify:
Appraisal of the inclusion, exclusion, and classification of each publication was conducted by a first coder (SR), and independently checked by a second coder (TCM, CP, AB) at every stage of the review process. Discrepancies were resolved through discussion between the reviewers.
(1) The proportion of studies which focus on describing characteristics of service delivery, compared to the proportion that report trials to test the efficacy or effectiveness of helplines in changing user outcomes; (2) The proportion of efficacy or effectiveness studies that meet EPOC criteria for methodological rigor; and (3) The potential benefits of cancer helplines for people affected by cancer based on findings from rigorous efficacy or effectiveness trials. 2. Method 2.1. Design A systematic review was conducted using the AMSTAR tool [45] and the PRISMA Statement [46] as guides for methodological quality. 2.2. Search strategy Publications which described original research and met the inclusion criteria for the review were identified from peer reviewed journals via an electronic database search of Medline, PsycINFO, EMBASE and CINAHL. The literature search was initiated using a PICO (population, intervention, comparison and outcome) statement [47], with the following keyword search terms used: [helpline or telephone counsel*ing or hotline or telecounsel*ing or telephone support or telephone information] and [cancer or neoplasm* or oncol*] and [outcome* or patient* or survivor* or famil* or partner or carer* or significant other* or content or topic or caller* or characteristic* or staff or volunteer* or nurse* or experience or satisfaction or quality or impact or unmet need* or perceived need or information or knowledge or service* or referral* or psychol* or distress or emot* or coping or worry or support or problem solving or skill* or self-efficacy or behaviour or action]. The search was limited to papers published in the last 20 years (between 1 January 1991 and 1 October 2011). 2.3. Inclusion and exclusion criteria Publications that identified the key search terms in either the title, abstract, article or MeSH heading were retained. Publications were excluded if they: were duplicates; were not published in English; did not describe original research; were not journal articles; were not relevant to people affected by cancer; or did not include a telephone-based service as part of their design. The full-text articles of potentially relevant original research studies were obtained. Publications were excluded from the review if they described telephone-based services which were: (1) not community delivered (e.g. a hospital-based service available only to the patients of that hospital); or (2) were community delivered but: (a) were not exclusively designed to deal with cancer related issues (e.g. crisis lines for people with a wide range of chronic diseases); (b) focused on cancer prevention or cancer screening activities only (e.g. smoking quitlines); (c) evaluated delivery of defined psychological therapies such as CBT, mindfulness or similar; or (d) were primarily peer-support services (e.g. telephone conversations with another cancer survivor).
2.4.1. Classification of publications by focus area All publications which met the eligibility criteria were coded to determine the proportion of papers that focused on: (1) Characteristics of cancer helpline users versus non-users: publications that reported: the number of users; types of users (e.g. diagnosed cancer patient or caregiver, cancer type, time since diagnosis, level of distress); patterns of use (e.g. first or subsequent use); and sources of referral. (2) Topics covered and content of calls: publications that reported aspects of the call including: issues discussed (e.g. treatment, emotional concerns); actions taken (e.g. written information sent, delivery of tiered care, referrals); and length of the call. (3) User satisfaction: publications that reported acceptability of the call to users or their level of satisfaction with the call. (4) Efficacy or effectiveness of helplines in changing user psychosocial outcomes: publications that reported study results about how helplines impact on users’: knowledge or information needs; involvement in decision-making; problem solving skills, selfefficacy or empowerment; or psychological distress. 2.4.2. Classification of efficacy or effectiveness publications All efficacy or effectiveness publications were then reviewed and categorised according to whether or not they met criteria for any of the four experimental designs defined and recommended by EPOC [48]. These four designs included randomised controlled trials (RCT), controlled clinical trials (CCT), controlled before and after studies (CBA) and interrupted time series (ITS). 2.4.3. Data extraction from rigorous efficacy or effectiveness trials Publications that met the EPOC intervention design criteria were assessed for risk of bias according to EPOC criteria for methodological rigor including allocation, unit of analysis, concealment allocation, blinding, and measurement approach. Data on each of the following variables was extracted from the final group of studies: authors; sample size; sample gender; cancer types; aims; intervention conditions; outcome measures; and outcomes of interest (knowledge/information needs, involvement in decision-making, problem solving, self-efficacy/empowerment, reduced psychological distress). 3. Results 3.1. Database search and publication exclusion The electronic database search identified 830 publications which met the keyword search terms (see Fig. 1). Full text copies of 216 (26%) publications were obtained for appraisal. Of these, 188 (87%) publications described telephone services that did not meet the inclusion criteria. A total of 28 (13%) full-text publications were included in the review. 3.2. Focus of original research As shown in Table 1, most publications described the characteristics of helpline users (n = 27), and the content of calls (n = 24). While many of the 28 publications described multiple attributes of helpline calls, 22 reported aspects of service delivery
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Identified potentially relevant publications from Medline, PsycINFO, EMBASE and CINAHL (n=830) Excluded, duplicate publications (n=363) Title and abstract review (n=467) Excluded, not relevant publications (n=251) Full text review (n=216)
Excluded, telephone services not relevant to the review (n=188) - Cancer prevention or screening (n=125) - Not community delivered (n=44) - Therapeutic psychological assistance (n=13) - Not for cancer related issues (n=3) - Peer support services (n=3)
Reviewed relevant publications (n=28) Fig. 1. Systematic review flow diagram.
Table 1 Original research articles describing helplines for people affected by cancer (n = 28). Focus of research
Number of articles
Study reference
Summary of findings
Characteristics of Helpline users and non-users
27
[28,32,34,37–39,41–44, 49–51,56–69]
Topics and content of calls
24
[28,32,34,38,39,41,43,44,49–51, 56,57,59,61–70]
User satisfaction Efficacy or effectiveness for changing any of 4* patient-reported psychosocial outcomes
9 6
[37,41,44,49,50,58,61,66,70] [37,42,44,49–51]
The majority of callers appear to be: female; aged 50 years or older; diagnosed with breast cancer; Caucasian; married; and highly educated Carers of people with cancer made up more than a third of all calls Most calls involved psychological or emotional support. Information about diagnosis, treatment and symptom management was commonly requested Calls specifically about concerns related to breast cancer were more common At least 85% of users report high levels of satisfaction Studies focused on changing outcomes related to: psychosocial well-being; distress; anxiety and depression; mood; relationships; worry; and existential well-being. Findings are mixed, most reported no significant differences in outcomes of interest, however some reported significantly less mood disturbance, loneliness and depression
* (1) Increased knowledge or decreased information needs; (2) greater involvement in decision-making; (3) improved problem solving skills, self-efficacy or empowerment; and (4) reduced psychological distress.
only. Only six publications described the efficacy or effectiveness of the helpline in changing user outcomes.
publications [42,44] demonstrating high levels of methodological rigor.
3.3. Proportion of efficacy or effectiveness publications that met EPOC criteria
3.4. Benefits of cancer helplines for people affected by cancer
Of the six publications identified as focusing on the efficacy or effectiveness of the helpline in changing user outcomes, only three [42,44,49] met the EPOC intervention design criteria. The remainder [37,50,51] were excluded due to having a crosssectional design or a pre/post-test design with no control or comparison group. As shown in Table 2, all three publications that met EPOC design criteria described RCTs, with two
Findings regarding benefits for people affected by cancer who contact, or are contacted by, a cancer helpline service can be seen in Table 3. Included publications examined changes in psychological distress [42,44] and self-efficacy [42,49]. The findings for improving self-efficacy were mixed. The findings for psychological distress were also mixed, with one study having a null finding [44] and the other study reporting that receiving any telephone contact (experimental arm and control arm 1) compared to mailed
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Table 2 Methodological characteristics of efficacy or effectiveness publications that met EPOC experimental design criteria. Author
Study design
Control group
Targeted behaviour
Allocated by
Unit of analysis
Concealed allocation
Patient follow-up
Blind to primary outcome
Baseline measure
Reliable primary outcome measure
Livingston et al. [44] Livingston et al. [49] Samarel et al. [42]
RCT RCT RCT
Yes Yes Yes
Patient outcome Patient outcome Patient outcome
Provider Provider Patient
Patient Patient Patient
Yes Yes Yes
Yes Yes No
Yes No Yes
Yes No Yes
Yes No Yes
information only (control arm 2) resulted in reduced mood disturbance and loneliness [42].
4. Discussion and conclusion 4.1. Summary of findings from included studies The helpline model of telephone-based information and support is used by many human service organisations, yet few intervention studies have explored the benefits of helplines for people affected by cancer. This review could only identify three studies which met EPOC design criteria for intervention methodology, with two of these studies considered to be methodologically rigorous. The findings of the study by Samarel et al. [42] showed that compared to mailing of an information kit alone, out-calls from the helpline plus mailing of an information kit led to significantly less mood disturbance and loneliness among women with breast cancer, but did not reduce cancer-related worry. While these findings are encouraging and suggest that cancer helplines may have some benefits for callers over and above the provision of printed information alone, the high volume of helpline-initiated outgoing calls used in this approach may be a barrier to adoption for some services. The remaining two publications were by the same author using the same sample [44,49]. The first publication described the feasibility and acceptability of the intervention design [49] while the second publication described the experimental trial outcomes [44]. The qualitative results from the first study suggested that the helpline-based interventions may be useful in improving men’s sense of self-efficacy and empowerment in relation to their diagnosis [49]. However, the quantitative results in the second study found that the intervention had no effect on patients’ levels of psychological distress, with no significant differences in anxiety, depression or distress observed between experimental and control groups [44]. 4.2. Potential reasons for mixed study findings Explanations for why the qualitative findings of Livingston et al. [49] were not subsequently reflected in the quantitative findings include the possibility that the chosen outcome variables (anxiety, depression, and distress) were not appropriate indicators of the types of benefits an individual would expect to receive following contact with a cancer helpline. It is also possible that the outcome measures selected (Hospital Anxiety and Depression Scale (HADS) and Cancer Specific Distress Measure) were not sensitive enough to detect small changes in these psychological outcomes. The samples used in these studies may have also influenced the study outcomes. Both studies focused on only one or two specific cancer types (colorectal, prostate or breast), resulting in either entirely male [44,49] or entirely female [42] samples. The homogeneity of these samples severely limits the potential to apply these findings to the broader population of cancer patients who use helplines.
4.3. Limitations This systematic review focused only on people diagnosed with cancer, as this group constitutes a large proportion of callers to cancer helplines in Australia [32]. However, helplines also receive calls from members of the general public who are not diagnosed with cancer, carers of individuals diagnosed with cancer, and health care professionals [32]. Given the high levels of unmet need experienced by caregivers of cancer patients [11], a review of the benefits of cancer helplines to caregivers would be a useful contribution to the field. Grey literature was not included in this review as, based on the authors’ collective involvement with national and international helpline consortia, it was considered unlikely that rigorous studies demonstrating an effect would exist in the unpublished literature. As our review returned only a small number of intervention studies (three publications), it was not possible to obtain an estimate of likely publication bias. It is also possible that by restricting the review to English language publications, and those that have been peer-reviewed, some relevant publications may have been excluded. 4.4. Recommendations for future research Findings from this review suggest that attention should be directed towards building the evidence-base regarding the extent to which cancer helplines can improve user outcomes. A number of methodological considerations need to be taken into account when designing such studies to ensure that benefits which are gained by helpline callers can be clearly demonstrated. 4.4.1. Intervention rather than descriptive studies Most existing studies examining cancer helplines are descriptive rather than comparative. If health care providers and human service organisations are to promote and encourage cancer patients to use the helpline model of information and support, it is essential to ensure that there is robust evidence demonstrating that it is beneficial. This review has revealed that there is little evidence of efficacy or effectiveness, and highlights that well controlled studies with appropriate outcome and process measures, are required. 4.4.2. Selection of appropriate outcomes of interest All three RCTs included in the current review focused on either psychological distress (anxiety, depression, mood disturbance) or self-efficacy and empowerment outcomes. However, it may be unreasonable to expect that a low-intensity, limited contact service such as a helpline could significantly reduce distress in people affected by cancer. This assumption is supported by the psycho-oncology literature, which has a large body of evidence suggesting that improving the psychological well-being of individuals with clinically significant levels of anxiety and/or depression requires intensive treatment modalities, such as CBT [52,53]. Instead, benefits which could be more realistically expected from the current helpline model might include: increased
Table 3 Findings from methodologically rigorous studies regarding the benefits of cancer helplines for people affected by cancer. Author
Cancer types
Aims
Livingston et al. [44]
n = 571 male = 100%
Colorectal Prostate
To examine whether specialist referral to a cancer helpline with 1 or 4 outcalls leads to greater reductions in cancer specific distress, anxiety and depression compared with usual care
Livingston et al.* [49]
n = 100 male = 100%
Colorectal Prostate
To test the feasibility and acceptability of a specialist referral combined with telephone outcalls
Samarel et al. [42]
n = 125 female = 100%
Breast
To examine whether individual telephonedelivered plus inperson group education and support leads to less cancer-related worry, mood disturbance, loneliness and improved existential wellbeing and quality of relationship with significant other compared with individual telephoneonly information and support and mailed information
Even though has RCT design, paper only reports qualitative data.
Outcome measures
Pre/post measures
Outcomes of interest investigated Increased knowledge or decreased information needs
Greater involvement in decisionmaking
Improved problem solving, selfefficacy and empowerment
Reduced psychological distress
Exp Arms: specialist referral to helpline with either 4 outcalls at 1, 6, 12 and 26 weeks postdiagnosis; or 1 outcall at 1 week postdiagnosis Usual Care Arm: specialist referral to helpline but patient has to initiate contact Exp Arms: specialist referral to helpline with either 4 outcalls at 1, 6, 12 and 26 weeks postdiagnosis; or 1 outcall at 1 week postdiagnosis Usual Care Arm: specialist referral to helpline but patient has to initiate contact
Hospital Anxiety and Depression Scale, Modified Cancer Specific Distress Measure
Baseline; 4, 7 and 12 months postdiagnosis
Not assessed
Not assessed
Not assessed
Pre-post reductions in all groups There was no significant difference between the 3 arms in the reduction of anxiety, depression, or distress
Telephone interview (qualitative) re: feelings about referral process and call timing, expectations of program, information received and satisfaction
7 months postdiagnosis
Not assessed
Not assessed
Not assessed
Exp Arm: weekly phone support for 5 months, twice monthly for 3 months, and monthly for 5 months; weekly 2 hr in-person group education from 4–5 months; info kit mailed at 4–5 months postsurgery Control Arm 1: weekly phone support for 5 months, twice monthly for 3 months, and monthly for 5 months; info kit mailed at 4–5 months post-surgery Control Arm 2: Info kit mailed at 4–5 months postsurgery
Visual Analogue Scale, Worry Existential Wellbeing Scale, Profile of Mood States, UCLA Loneliness Scale Version 3, Relationship Change Scale
Baseline; 3, 5 and 13 months postsurgery
Not assessed
Not assessed
Exp arms reported the intervention helped in: thinking positively (87%); thinking things through (72%); and talking with doctors (59%). Usual care arm who called the helpline reported it was a positive experience (2 of 3 callers) and was helpful in talking with doctors (3 of 3 callers) There was no significant difference between the 3 groups in the improvement of existential wellbeing
There were no significant differences between the 3 groups in the reduction of cancer-related worry While exp arm and control arm 1 did not differ from each other, both groups reported significantly less mood disturbance and loneliness than control arm 2 (p < 0.1)
307
*
Intervention arms
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Sample size and gender
308
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knowledge; decreased information needs; and greater involvement in decision-making regarding treatment and care [34,38– 40]. The inclusion of these outcomes in future intervention studies may assist with determining the true value of helplines to callers.
Conflict of interest statement The authors declare they have no conflicts of interest. Acknowledgements
4.4.3. Focus on cancer populations with high unmet needs The three intervention trials [42,44,49] included in this review only included patients representing three cancer populations: breast; prostate; and colorectal. While being among the most common types of cancers diagnosed, these cancer types also have among the highest survival and remission rates. A large proportion of patients diagnosed with these three cancer types have promising prognoses, with five-year survival rates ranging from approximately 62% to 88% [1]. In contrast, patients diagnosed with pancreatic or lung cancer generally have a much poorer prognosis, and much lower five-year survival rates of approximately 5% and 12%, respectively [1]. It is plausible that people affected by such debilitating cancer types may have more to gain from the type of support offered by cancer helplines, and therefore more significant changes in caller outcomes might be able to be detected. 4.4.4. Inclusion of process measures None of the RCTs included in this review examined helpline staffs’ compliance with core competencies or intervention delivery as part of their methodology. The absence of adherence or process measures makes it difficult to know whether the lack of change in patient outcomes could be due to poor fidelity to intervention protocols or to variations in the skill levels of staff. Strategies such as: silent observation; simulated calls; and reviewing transcripts of call content (with caller consent) should be built into the design of future helpline intervention studies to assess clinical performance and intervention fidelity [54,55]. 4.5. Conclusion The findings of this review indicate that more intervention studies are needed in order to determine the benefits of cancer helplines to patients diagnosed with cancer. Future studies should focus on relevant outcomes (e.g. increased knowledge), underserved cancer populations with high levels of unmet need (e.g. lung cancer patients), and include process measures in their design to adjust for variation in call content and adherence to intervention protocols. With increasing emphasis on the delivery of bestpractise care, building the evidence base in this field may assist cancer helplines to increase their service uptake, reach, and benefits to callers. 4.6. Practise implications While robust, evidence-based practise recommendations cannot be determined from the findings of the three included RCT’s, the models of caller contact tested in these studies may provide an indication of strategies which could enhance existing helpline practises. Greater engagement of under-served groups such as pancreatic or lung cancer patients may be achieved by cancer specialists referring their newly diagnosed patients to the helpline, and helpline staff initiating outcalls to these patients. Providing helpline-initiated outcalls which involves continuity in the consultant calling the individual affected by cancer over a 12 month period may also have benefits for patient mood. Designing studies which compare different models of external referral, and different numbers of helpline initiated outcalls, may help to inform thresholds for which the maximum benefits to patients can be achieved in the most cost-effective way.
This research is funded by a Strategic Research Partnership Grant from NSW Cancer Council to the Newcastle Cancer Control Collaborative (New-3C), and a National Health and Medical Research Council (NHMRC) Partnership Grant (grant ID 1055408). Infrastructure support was provided from the Hunter Medical Research Institute. Dr Clinton-McHarg is supported by a Leukaemia Foundation of Queensland Post-Doctoral Research Fellowship. A/Prof Paul is supported by an NHMRC Career Development Fellowship. Dr Allison Boyes is supported by an NHMRC Early Career Fellowship and Cancer Institute Early Career Fellowship. References [1] Australian Institute of Health and Welfare & Australasian Association of Cancer Registries. Cancer in Australia: an overview. Canberra: AIHW; 2010. [2] Boyle P, Levin B, editors. World cancer report 2008. Lyon: IARC; 2008. [3] Cancer Australia. Cancer Australia strategic plan 2011–2014. Sydney: Cancer Australia; 2011. [4] Carlson LE, Waller A, Mitchell AJ. Screening for distress and unmet needs in patients with cancer: review and recommendations. J Clin Oncol. 2012; 30:1160–77. [5] Holland J, Reznik I. Pathways for psychosocial care of cancer survivors. Cancer 2005;104:2624–37. [6] Dumont S, Turgeon J, Allard P, Gagnon P, Charbonneau C, Ve´zina L. Caring for a loved one with advanced cancer: determinants of psychological distress in family caregivers. J Palliat Med 2006;9:912–21. [7] Harrison J, Young J, Price M, Butow P, Solomon M. What are the unmet supportive care needs of people with cancer? A systematic review. Support Care Cancer 2009;17:1117–28. [8] Armes J, Crowe M, Colbourne L, Morgan H, Murrells T, Oakley C, et al. Patients’ supportive care needs beyond the end of cancer treatment: a prospective, longitudinal survey. J Clin Oncol 2009;27:6172–9. [9] Boyes A, Girgis A, D’Este C, Zucca A. Prevalence and correlates of cancer survivors’ supportive care needs 6 months after diagnosis: a population-based cross-sectional study. BMC Cancer 2012;12:150. [10] Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P, The Supportive Care Review Group. The unmet supportive care needs of patients with cancer. Cancer 2000;88:226–37. [11] Lambert S, Harrison J, Smith E, Bonevski B, Carey M, Lawsin C, et al. The unmet needs of partners and caregivers of adults diagnosed with cancer: a systematic review. BMJ Support Palliat Care 2012;2:224–30. [12] Skarstein J, Aass N, Fossa˚ SD, Skovlund E, Dahl AA. Anxiety and depression in cancer patients: relation between the Hospital Anxiety and Depression Scale and the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire. J Psychosom Res 2000;49:27–34. [13] Fann JR, Thomas-Rich AM, Katon WJ, Cowley D, Pepping M, McGregor BA, et al. Major depression after breast cancer: a review of epidemiology and treatment. Gen Hosp Psychiatry 2008;30:112–26. [14] Snyder C, Garrett-Mayer E, Brahmer J, Carducci M, Pili R, Stearns V, et al. Symptoms, supportive care needs, and function in cancer patients: how are they related. Qual Life Res 2008;17:665–77. [15] Russ TC, Stamatakis E, Hamer M, Starr JM, Kivima¨ki M, Batty GD. Association between psychological distress and mortality: individual participant pooled analysis of 10 prospective cohort studies. Br Med J 2012;345. e4933. [16] Lazarus R, Folkman S. Stress, appraisal, and coping. New York, NY: Springer Publishing Company, Inc.; 1984. [17] Zeidner M, Endler NS. Handbook of coping: theory, research, applications. Oxford: John Wiley & Sons; 1996. [18] Carpenter BN. Personal coping: theory, research, and application. Westport, CT: Praeger Publishers; 1992. [19] Hutchison SD, Steginga SK, Dunn J. The tiered model of psychosocial intervention in cancer: a community based approach. Psycho-Oncology 2006;15: 541–6. [20] Bados A, Balaguer G, Saldana C. The efficacy of cognitive-behavioral therapy and the problem of drop-out. J Clin Psychol 2007;63:585–92. [21] Morrison N. Group cognitive therapy: treatment of choice or sub-optimal option. Behav Cogn Psychother 2001;29:311–32. [22] Tucker M, Oei T. Is group more cost effective than individual cognitive behaviour therapy? The evidence is not solid yet. Behav Cogn Psychother 2007;35:77–91. [23] Proudfoot J, Ryden C, Everitt B, Shapiro D, Goldberg D, Mann A, et al. Clinical efficacy of computerised cognitive-behavioural therapy for anxiety and depression in primary care: randomised controlled trial. Br J Psychiatry 2004;185:46–54.
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Contents lists available at ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Review
Do cancer helplines deliver benefits to people affected by cancer? A systematic review Tara Clinton-McHarg a, Christine Paul a,*, Allison Boyes a, Shiho Rose a, Paula Vallentine b, Lorna O’Brien b a b
Priority Research Centre for Health Behaviour, University of Newcastle and Hunter Medical Research Institute, Newcastle, Australia Cancer Council NSW, Sydney, Australia
A R T I C L E I N F O
A B S T R A C T
Article history: Received 12 March 2014 Received in revised form 5 September 2014 Accepted 10 September 2014
Objectives: To determine the: (1) proportion of studies that describe characteristics of helpline service delivery, compared to the proportion that report trials testing efficacy or effectiveness of helplines in changing user outcomes; (2) proportion of efficacy or effectiveness studies that meet EPOC criteria for methodological rigor; and (3) potential benefits of cancer helplines for people affected by cancer based on findings from rigorous efficacy or effectiveness trials. Methods: Electronic databases (Medline, PsycINFO, EMBASE and CINAHL) were searched to identify English-language studies describing original research published from 1991 to 2011. Results: Twenty-eight publications met the review inclusion criteria. From these studies, data on: the characteristics of cancer helpline users; call content; and user satisfaction, were extracted. The potential for helplines to improve the psychosocial outcomes of callers was examined for the three intervention trials. Conclusion: There is a lack of robust evidence regarding the level and types of benefits that cancer helplines may deliver to callers affected by cancer. Given increased emphasis on delivering best-practise supportive care, building the evidence base in this field may assist cancer helplines to increase their service uptake, reach, and benefit to callers. Practise implications: There is a need for more rigorous intervention-focussed studies in this field across a broader range of cancer populations. Future studies should focus on relevant patient-centred outcomes, such as improved knowledge and greater involvement in decision-making, while incorporating process measures to account for intervention fidelity and clinical performance. ß 2014 Elsevier Ireland Ltd. All rights reserved.
Keywords: Cancer Counselling Helpline Information service Patient education Psychosocial support systems Systematic review
Contents 1.
2.
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Prevalence of psychological distress and unmet needs among people affected by cancer 1.1. Interventions for reducing psychosocial morbidity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.2. 1.3. Establishment and evolution of cancer helplines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Potential benefits of cancer helplines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.4. Purpose of review . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.5. Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1. Design . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Search strategy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2. Inclusion and exclusion criteria . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3.
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* Corresponding author at: Priority Research Centre for Health Behaviour, Level 4, Hunter Medical Research Institute Building, University of Newcastle, Callaghan 2308, NSW, Australia. Tel.: +61 2 4042 0693; fax: +61 2 4042 0040. E-mail address: [email protected] (C. Paul). http://dx.doi.org/10.1016/j.pec.2014.09.004 0738-3991/ß 2014 Elsevier Ireland Ltd. All rights reserved.
T. Clinton-McHarg et al. / Patient Education and Counseling 97 (2014) 302–309
2.4.
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Data synthesis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Classification of publications by focus area . . . . . . . . . . . . . . . . . . 2.4.1. Classification of efficacy or effectiveness publications. . . . . . . . . . 2.4.2. Data extraction from rigorous efficacy or effectiveness trials . . . . 2.4.3. Results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Database search and publication exclusion . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1. Focus of original research. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2. Proportion of efficacy or effectiveness publications that met EPOC criteria 3.3. 3.4. Benefits of cancer helplines for people affected by cancer . . . . . . . . . . . . . . Discussion and conclusion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Summary of findings from included studies . . . . . . . . . . . . . . . . . . . . . . . . . 4.1. 4.2. Potential reasons for mixed study findings . . . . . . . . . . . . . . . . . . . . . . . . . . Limitations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3. Recommendations for future research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.4. Intervention rather than descriptive studies . . . . . . . . . . . . . . . . . 4.4.1. 4.4.2. Selection of appropriate outcomes of interest . . . . . . . . . . . . . . . . Focus on cancer populations with high unmet needs . . . . . . . . . . 4.4.3. Inclusion of process measures . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.4.4. Conclusion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.5. 4.6. Practise implications. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Acknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
1. Introduction 1.1. Prevalence of psychological distress and unmet needs among people affected by cancer Cancer is the leading cause of disease-related burden worldwide [1–3]. A large proportion of people affected by cancer report psychosocial concerns with high levels of distress reported by: 25 to 62% of patients receiving treatment; up to 40% of cancer survivors [4,5]; and up to 60% of support persons caring for patients with advanced disease [6]. Large-scale studies of cancerspecific supportive care needs reveal that unmet needs for psychological help, information, and assistance with daily living activities are common amongst patients and survivors [7–10], while unmet needs related to financial support and relationships are frequently reported by support persons [11]. Addressing psychosocial morbidity in individuals affected by cancer is important due to its association with decreased social functioning, more intense physical symptoms, cognitive impairment, poor adherence to treatment, fewer health-promoting behaviours, and reduced length of life [12–15]. 1.2. Interventions for reducing psychosocial morbidity According to stress-coping theory, the way an individual responds to a stressful event (such as a cancer diagnosis) depends on how they perceive: (1) the level of burden associated with the event; and (2) the availability of resources to help them cope with that burden [16]. For this reason, research has generally focused on developing interventions which attempt to either alter cancer patients’ perceptions of their disease [17] or increase their ability to access resources [18]. Such interventions can be of either highor low-intensity. Using stepped care as a framework [19], intervention intensity can be defined according to criteria such as accessibility, mode of delivery, number of contacts, length of contact, extent of specialist involvement, and cost. In this context, a high-intensity intervention might include individualised therapy, such as cognitive behavioural therapy (CBT). CBT can require a high patient burden for participation [20], extensive time commitment [21], high costs [22], and is often limited by the accessibility or availability of trained therapists [23,24]. In contrast, a community-based telephone helpline represents a low-intensity intervention [25–27]. A strength of this approach is the ability to assist individuals who may be unable to receive
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traditional face-to-face supportive care due to geographical isolation [28] or poor physical health [29]. Telephone-based delivery of support also provides: anonymity to the caller; equity of access; and a cheaper alternative compared to face-to-face services [29]. 1.3. Establishment and evolution of cancer helplines Since its establishment in 1975, the Cancer Information Service in the United States has provided education and support to cancer patients, their family and friends, and health professionals via its telephone helpline service. Provision of uniform, toll-free numbers has improved accessibility, and technological advances has enabled streamlining of up-to-date information and coordinated referrals to other support networks [30]. The cancer helpline has evolved into an international model of care, operating across numerous countries [31], including the United Kingdom [28] and Australia [32]. The aim of the cancer helpline services is to provide callers with cancer-related emotional, informational and practical support from health professionals experienced in oncology [32,33]. Helpline staff do not engage in therapeutic counselling or offer individual medical advice, but instead provide information, reassurance and referral options to callers [34]. Despite these practical advantages, relatively little is known about whether cancer helplines actually deliver psychosocial benefits to people affected by cancer, and if so, what these benefits may be. 1.4. Potential benefits of cancer helplines Traditionally, the success of cancer helplines has been measured in terms of caller use, satisfaction, and acceptability. Satisfaction surveys [33–37] suggest that the majority of helpline callers are generally satisfied with the information they received, the way their call was managed, and the consultant’s knowledge and approach. While evidence of caller satisfaction and acceptability are important indicators of service delivery, these outcomes do not demonstrate whether cancer helplines are effecting a change in the callers’ psychosocial well-being. The types of psychosocial benefits a cancer helpline might be expected to confer to people affected by cancer include: reduced information needs and increased knowledge [34,38]; greater involvement in decision-making [39,40]; improved problem-solving skills, selfefficacy and empowerment [41,42]; and reduced psychological distress [43,44].
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1.5. Purpose of review
2.4. Data synthesis
Although it is assumed that cancer helplines deliver psychosocial benefits to people affected by cancer, no previous reviews have critically assessed the literature to identify what evidence-based studies of the benefits of cancer helplines exist, or the methodological quality of such studies. This review aims to critically examine original research regarding cancer helplines to identify:
Appraisal of the inclusion, exclusion, and classification of each publication was conducted by a first coder (SR), and independently checked by a second coder (TCM, CP, AB) at every stage of the review process. Discrepancies were resolved through discussion between the reviewers.
(1) The proportion of studies which focus on describing characteristics of service delivery, compared to the proportion that report trials to test the efficacy or effectiveness of helplines in changing user outcomes; (2) The proportion of efficacy or effectiveness studies that meet EPOC criteria for methodological rigor; and (3) The potential benefits of cancer helplines for people affected by cancer based on findings from rigorous efficacy or effectiveness trials. 2. Method 2.1. Design A systematic review was conducted using the AMSTAR tool [45] and the PRISMA Statement [46] as guides for methodological quality. 2.2. Search strategy Publications which described original research and met the inclusion criteria for the review were identified from peer reviewed journals via an electronic database search of Medline, PsycINFO, EMBASE and CINAHL. The literature search was initiated using a PICO (population, intervention, comparison and outcome) statement [47], with the following keyword search terms used: [helpline or telephone counsel*ing or hotline or telecounsel*ing or telephone support or telephone information] and [cancer or neoplasm* or oncol*] and [outcome* or patient* or survivor* or famil* or partner or carer* or significant other* or content or topic or caller* or characteristic* or staff or volunteer* or nurse* or experience or satisfaction or quality or impact or unmet need* or perceived need or information or knowledge or service* or referral* or psychol* or distress or emot* or coping or worry or support or problem solving or skill* or self-efficacy or behaviour or action]. The search was limited to papers published in the last 20 years (between 1 January 1991 and 1 October 2011). 2.3. Inclusion and exclusion criteria Publications that identified the key search terms in either the title, abstract, article or MeSH heading were retained. Publications were excluded if they: were duplicates; were not published in English; did not describe original research; were not journal articles; were not relevant to people affected by cancer; or did not include a telephone-based service as part of their design. The full-text articles of potentially relevant original research studies were obtained. Publications were excluded from the review if they described telephone-based services which were: (1) not community delivered (e.g. a hospital-based service available only to the patients of that hospital); or (2) were community delivered but: (a) were not exclusively designed to deal with cancer related issues (e.g. crisis lines for people with a wide range of chronic diseases); (b) focused on cancer prevention or cancer screening activities only (e.g. smoking quitlines); (c) evaluated delivery of defined psychological therapies such as CBT, mindfulness or similar; or (d) were primarily peer-support services (e.g. telephone conversations with another cancer survivor).
2.4.1. Classification of publications by focus area All publications which met the eligibility criteria were coded to determine the proportion of papers that focused on: (1) Characteristics of cancer helpline users versus non-users: publications that reported: the number of users; types of users (e.g. diagnosed cancer patient or caregiver, cancer type, time since diagnosis, level of distress); patterns of use (e.g. first or subsequent use); and sources of referral. (2) Topics covered and content of calls: publications that reported aspects of the call including: issues discussed (e.g. treatment, emotional concerns); actions taken (e.g. written information sent, delivery of tiered care, referrals); and length of the call. (3) User satisfaction: publications that reported acceptability of the call to users or their level of satisfaction with the call. (4) Efficacy or effectiveness of helplines in changing user psychosocial outcomes: publications that reported study results about how helplines impact on users’: knowledge or information needs; involvement in decision-making; problem solving skills, selfefficacy or empowerment; or psychological distress. 2.4.2. Classification of efficacy or effectiveness publications All efficacy or effectiveness publications were then reviewed and categorised according to whether or not they met criteria for any of the four experimental designs defined and recommended by EPOC [48]. These four designs included randomised controlled trials (RCT), controlled clinical trials (CCT), controlled before and after studies (CBA) and interrupted time series (ITS). 2.4.3. Data extraction from rigorous efficacy or effectiveness trials Publications that met the EPOC intervention design criteria were assessed for risk of bias according to EPOC criteria for methodological rigor including allocation, unit of analysis, concealment allocation, blinding, and measurement approach. Data on each of the following variables was extracted from the final group of studies: authors; sample size; sample gender; cancer types; aims; intervention conditions; outcome measures; and outcomes of interest (knowledge/information needs, involvement in decision-making, problem solving, self-efficacy/empowerment, reduced psychological distress). 3. Results 3.1. Database search and publication exclusion The electronic database search identified 830 publications which met the keyword search terms (see Fig. 1). Full text copies of 216 (26%) publications were obtained for appraisal. Of these, 188 (87%) publications described telephone services that did not meet the inclusion criteria. A total of 28 (13%) full-text publications were included in the review. 3.2. Focus of original research As shown in Table 1, most publications described the characteristics of helpline users (n = 27), and the content of calls (n = 24). While many of the 28 publications described multiple attributes of helpline calls, 22 reported aspects of service delivery
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Identified potentially relevant publications from Medline, PsycINFO, EMBASE and CINAHL (n=830) Excluded, duplicate publications (n=363) Title and abstract review (n=467) Excluded, not relevant publications (n=251) Full text review (n=216)
Excluded, telephone services not relevant to the review (n=188) - Cancer prevention or screening (n=125) - Not community delivered (n=44) - Therapeutic psychological assistance (n=13) - Not for cancer related issues (n=3) - Peer support services (n=3)
Reviewed relevant publications (n=28) Fig. 1. Systematic review flow diagram.
Table 1 Original research articles describing helplines for people affected by cancer (n = 28). Focus of research
Number of articles
Study reference
Summary of findings
Characteristics of Helpline users and non-users
27
[28,32,34,37–39,41–44, 49–51,56–69]
Topics and content of calls
24
[28,32,34,38,39,41,43,44,49–51, 56,57,59,61–70]
User satisfaction Efficacy or effectiveness for changing any of 4* patient-reported psychosocial outcomes
9 6
[37,41,44,49,50,58,61,66,70] [37,42,44,49–51]
The majority of callers appear to be: female; aged 50 years or older; diagnosed with breast cancer; Caucasian; married; and highly educated Carers of people with cancer made up more than a third of all calls Most calls involved psychological or emotional support. Information about diagnosis, treatment and symptom management was commonly requested Calls specifically about concerns related to breast cancer were more common At least 85% of users report high levels of satisfaction Studies focused on changing outcomes related to: psychosocial well-being; distress; anxiety and depression; mood; relationships; worry; and existential well-being. Findings are mixed, most reported no significant differences in outcomes of interest, however some reported significantly less mood disturbance, loneliness and depression
* (1) Increased knowledge or decreased information needs; (2) greater involvement in decision-making; (3) improved problem solving skills, self-efficacy or empowerment; and (4) reduced psychological distress.
only. Only six publications described the efficacy or effectiveness of the helpline in changing user outcomes.
publications [42,44] demonstrating high levels of methodological rigor.
3.3. Proportion of efficacy or effectiveness publications that met EPOC criteria
3.4. Benefits of cancer helplines for people affected by cancer
Of the six publications identified as focusing on the efficacy or effectiveness of the helpline in changing user outcomes, only three [42,44,49] met the EPOC intervention design criteria. The remainder [37,50,51] were excluded due to having a crosssectional design or a pre/post-test design with no control or comparison group. As shown in Table 2, all three publications that met EPOC design criteria described RCTs, with two
Findings regarding benefits for people affected by cancer who contact, or are contacted by, a cancer helpline service can be seen in Table 3. Included publications examined changes in psychological distress [42,44] and self-efficacy [42,49]. The findings for improving self-efficacy were mixed. The findings for psychological distress were also mixed, with one study having a null finding [44] and the other study reporting that receiving any telephone contact (experimental arm and control arm 1) compared to mailed
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Table 2 Methodological characteristics of efficacy or effectiveness publications that met EPOC experimental design criteria. Author
Study design
Control group
Targeted behaviour
Allocated by
Unit of analysis
Concealed allocation
Patient follow-up
Blind to primary outcome
Baseline measure
Reliable primary outcome measure
Livingston et al. [44] Livingston et al. [49] Samarel et al. [42]
RCT RCT RCT
Yes Yes Yes
Patient outcome Patient outcome Patient outcome
Provider Provider Patient
Patient Patient Patient
Yes Yes Yes
Yes Yes No
Yes No Yes
Yes No Yes
Yes No Yes
information only (control arm 2) resulted in reduced mood disturbance and loneliness [42].
4. Discussion and conclusion 4.1. Summary of findings from included studies The helpline model of telephone-based information and support is used by many human service organisations, yet few intervention studies have explored the benefits of helplines for people affected by cancer. This review could only identify three studies which met EPOC design criteria for intervention methodology, with two of these studies considered to be methodologically rigorous. The findings of the study by Samarel et al. [42] showed that compared to mailing of an information kit alone, out-calls from the helpline plus mailing of an information kit led to significantly less mood disturbance and loneliness among women with breast cancer, but did not reduce cancer-related worry. While these findings are encouraging and suggest that cancer helplines may have some benefits for callers over and above the provision of printed information alone, the high volume of helpline-initiated outgoing calls used in this approach may be a barrier to adoption for some services. The remaining two publications were by the same author using the same sample [44,49]. The first publication described the feasibility and acceptability of the intervention design [49] while the second publication described the experimental trial outcomes [44]. The qualitative results from the first study suggested that the helpline-based interventions may be useful in improving men’s sense of self-efficacy and empowerment in relation to their diagnosis [49]. However, the quantitative results in the second study found that the intervention had no effect on patients’ levels of psychological distress, with no significant differences in anxiety, depression or distress observed between experimental and control groups [44]. 4.2. Potential reasons for mixed study findings Explanations for why the qualitative findings of Livingston et al. [49] were not subsequently reflected in the quantitative findings include the possibility that the chosen outcome variables (anxiety, depression, and distress) were not appropriate indicators of the types of benefits an individual would expect to receive following contact with a cancer helpline. It is also possible that the outcome measures selected (Hospital Anxiety and Depression Scale (HADS) and Cancer Specific Distress Measure) were not sensitive enough to detect small changes in these psychological outcomes. The samples used in these studies may have also influenced the study outcomes. Both studies focused on only one or two specific cancer types (colorectal, prostate or breast), resulting in either entirely male [44,49] or entirely female [42] samples. The homogeneity of these samples severely limits the potential to apply these findings to the broader population of cancer patients who use helplines.
4.3. Limitations This systematic review focused only on people diagnosed with cancer, as this group constitutes a large proportion of callers to cancer helplines in Australia [32]. However, helplines also receive calls from members of the general public who are not diagnosed with cancer, carers of individuals diagnosed with cancer, and health care professionals [32]. Given the high levels of unmet need experienced by caregivers of cancer patients [11], a review of the benefits of cancer helplines to caregivers would be a useful contribution to the field. Grey literature was not included in this review as, based on the authors’ collective involvement with national and international helpline consortia, it was considered unlikely that rigorous studies demonstrating an effect would exist in the unpublished literature. As our review returned only a small number of intervention studies (three publications), it was not possible to obtain an estimate of likely publication bias. It is also possible that by restricting the review to English language publications, and those that have been peer-reviewed, some relevant publications may have been excluded. 4.4. Recommendations for future research Findings from this review suggest that attention should be directed towards building the evidence-base regarding the extent to which cancer helplines can improve user outcomes. A number of methodological considerations need to be taken into account when designing such studies to ensure that benefits which are gained by helpline callers can be clearly demonstrated. 4.4.1. Intervention rather than descriptive studies Most existing studies examining cancer helplines are descriptive rather than comparative. If health care providers and human service organisations are to promote and encourage cancer patients to use the helpline model of information and support, it is essential to ensure that there is robust evidence demonstrating that it is beneficial. This review has revealed that there is little evidence of efficacy or effectiveness, and highlights that well controlled studies with appropriate outcome and process measures, are required. 4.4.2. Selection of appropriate outcomes of interest All three RCTs included in the current review focused on either psychological distress (anxiety, depression, mood disturbance) or self-efficacy and empowerment outcomes. However, it may be unreasonable to expect that a low-intensity, limited contact service such as a helpline could significantly reduce distress in people affected by cancer. This assumption is supported by the psycho-oncology literature, which has a large body of evidence suggesting that improving the psychological well-being of individuals with clinically significant levels of anxiety and/or depression requires intensive treatment modalities, such as CBT [52,53]. Instead, benefits which could be more realistically expected from the current helpline model might include: increased
Table 3 Findings from methodologically rigorous studies regarding the benefits of cancer helplines for people affected by cancer. Author
Cancer types
Aims
Livingston et al. [44]
n = 571 male = 100%
Colorectal Prostate
To examine whether specialist referral to a cancer helpline with 1 or 4 outcalls leads to greater reductions in cancer specific distress, anxiety and depression compared with usual care
Livingston et al.* [49]
n = 100 male = 100%
Colorectal Prostate
To test the feasibility and acceptability of a specialist referral combined with telephone outcalls
Samarel et al. [42]
n = 125 female = 100%
Breast
To examine whether individual telephonedelivered plus inperson group education and support leads to less cancer-related worry, mood disturbance, loneliness and improved existential wellbeing and quality of relationship with significant other compared with individual telephoneonly information and support and mailed information
Even though has RCT design, paper only reports qualitative data.
Outcome measures
Pre/post measures
Outcomes of interest investigated Increased knowledge or decreased information needs
Greater involvement in decisionmaking
Improved problem solving, selfefficacy and empowerment
Reduced psychological distress
Exp Arms: specialist referral to helpline with either 4 outcalls at 1, 6, 12 and 26 weeks postdiagnosis; or 1 outcall at 1 week postdiagnosis Usual Care Arm: specialist referral to helpline but patient has to initiate contact Exp Arms: specialist referral to helpline with either 4 outcalls at 1, 6, 12 and 26 weeks postdiagnosis; or 1 outcall at 1 week postdiagnosis Usual Care Arm: specialist referral to helpline but patient has to initiate contact
Hospital Anxiety and Depression Scale, Modified Cancer Specific Distress Measure
Baseline; 4, 7 and 12 months postdiagnosis
Not assessed
Not assessed
Not assessed
Pre-post reductions in all groups There was no significant difference between the 3 arms in the reduction of anxiety, depression, or distress
Telephone interview (qualitative) re: feelings about referral process and call timing, expectations of program, information received and satisfaction
7 months postdiagnosis
Not assessed
Not assessed
Not assessed
Exp Arm: weekly phone support for 5 months, twice monthly for 3 months, and monthly for 5 months; weekly 2 hr in-person group education from 4–5 months; info kit mailed at 4–5 months postsurgery Control Arm 1: weekly phone support for 5 months, twice monthly for 3 months, and monthly for 5 months; info kit mailed at 4–5 months post-surgery Control Arm 2: Info kit mailed at 4–5 months postsurgery
Visual Analogue Scale, Worry Existential Wellbeing Scale, Profile of Mood States, UCLA Loneliness Scale Version 3, Relationship Change Scale
Baseline; 3, 5 and 13 months postsurgery
Not assessed
Not assessed
Exp arms reported the intervention helped in: thinking positively (87%); thinking things through (72%); and talking with doctors (59%). Usual care arm who called the helpline reported it was a positive experience (2 of 3 callers) and was helpful in talking with doctors (3 of 3 callers) There was no significant difference between the 3 groups in the improvement of existential wellbeing
There were no significant differences between the 3 groups in the reduction of cancer-related worry While exp arm and control arm 1 did not differ from each other, both groups reported significantly less mood disturbance and loneliness than control arm 2 (p < 0.1)
307
*
Intervention arms
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Sample size and gender
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knowledge; decreased information needs; and greater involvement in decision-making regarding treatment and care [34,38– 40]. The inclusion of these outcomes in future intervention studies may assist with determining the true value of helplines to callers.
Conflict of interest statement The authors declare they have no conflicts of interest. Acknowledgements
4.4.3. Focus on cancer populations with high unmet needs The three intervention trials [42,44,49] included in this review only included patients representing three cancer populations: breast; prostate; and colorectal. While being among the most common types of cancers diagnosed, these cancer types also have among the highest survival and remission rates. A large proportion of patients diagnosed with these three cancer types have promising prognoses, with five-year survival rates ranging from approximately 62% to 88% [1]. In contrast, patients diagnosed with pancreatic or lung cancer generally have a much poorer prognosis, and much lower five-year survival rates of approximately 5% and 12%, respectively [1]. It is plausible that people affected by such debilitating cancer types may have more to gain from the type of support offered by cancer helplines, and therefore more significant changes in caller outcomes might be able to be detected. 4.4.4. Inclusion of process measures None of the RCTs included in this review examined helpline staffs’ compliance with core competencies or intervention delivery as part of their methodology. The absence of adherence or process measures makes it difficult to know whether the lack of change in patient outcomes could be due to poor fidelity to intervention protocols or to variations in the skill levels of staff. Strategies such as: silent observation; simulated calls; and reviewing transcripts of call content (with caller consent) should be built into the design of future helpline intervention studies to assess clinical performance and intervention fidelity [54,55]. 4.5. Conclusion The findings of this review indicate that more intervention studies are needed in order to determine the benefits of cancer helplines to patients diagnosed with cancer. Future studies should focus on relevant outcomes (e.g. increased knowledge), underserved cancer populations with high levels of unmet need (e.g. lung cancer patients), and include process measures in their design to adjust for variation in call content and adherence to intervention protocols. With increasing emphasis on the delivery of bestpractise care, building the evidence base in this field may assist cancer helplines to increase their service uptake, reach, and benefits to callers. 4.6. Practise implications While robust, evidence-based practise recommendations cannot be determined from the findings of the three included RCT’s, the models of caller contact tested in these studies may provide an indication of strategies which could enhance existing helpline practises. Greater engagement of under-served groups such as pancreatic or lung cancer patients may be achieved by cancer specialists referring their newly diagnosed patients to the helpline, and helpline staff initiating outcalls to these patients. Providing helpline-initiated outcalls which involves continuity in the consultant calling the individual affected by cancer over a 12 month period may also have benefits for patient mood. Designing studies which compare different models of external referral, and different numbers of helpline initiated outcalls, may help to inform thresholds for which the maximum benefits to patients can be achieved in the most cost-effective way.
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