Cancer Helpline Research Articles

Brief psychological distress screening on a cancer helpline: How nurses introduce, and callers respond to, the Distress Thermometer.

Helplines are increasingly used to provide information and support for people affected by cancer, and the distress routinely associated with diagnosis and treatment is a major focus for those providing such care. Little is known, however, about how the Distress Thermometer (DT), a widely used tool for the assessment of patient/carer distress on cancer-support telephone helplines, is introduced and used in such settings. Using the method of conversation analysis, we present a qualitative analysis of DT use in actual telephone interactions by looking closely at how particular practices shape interaction on a cancer helpline. Specifically, we examine how oncology-trained nurse call-takers used the DT, in situ, as a tool for assessing callers, as well as examining how callers responded to this brief screening tool. Our findings show how particular positioning of the DT in the call, and particular forms of its delivery, tend to generate brief responses from callers that avoid topicalization of distress, and tend not to be associated with referral to support services. Implications for successful integration of the DT as a screening tool in cancer- and other health-helpline interactions, as well as for effective training of users, are discussed.

Cancer Treatment Helpline: a retrospective study of the NHS Tayside experience

BackgroundTreatment-related toxicity and delays in the management of this toxicity can impact the outcomes of patient with cancer. In Scotland, a national cancer helpline was established to provide triage assessment...

Meeting the Information and Support Needs of Blood Cancer Patients and Caregivers: A Longitudinal Study of a Model of Patient-Centered Information Delivery.

Access to reliable, up-to-date information and resources can assist individuals managing and living with cancer. The Leukemia & Lymphoma Society, through its Information Resource Center, provides personalized information and support to individuals affected by blood cancer. To examine its value and impact, we conducted qualitative interviews (n = 18) and an online survey of patients and caregivers (N = 515) after they talked with an Information Resource Center Information Specialist by phone, with a follow-up survey about 6 months later. Respondents most commonly contacted the Information Resource Center to get referrals to support programs (40.4%) and to obtain information about getting a second opinion (36.5%) and financial assistance (36.2%). After talking with an Information Specialist, respondents felt more hopeful (85.9%), more confident in managing care (82.9%), and more knowledgeable about their diagnosis (49.5%) and financial resources (42.4%). After speaking with an Information Specialist, respondents changed how they advocated for themselves/loved one (23.8%), changed how they communicated with doctors/other providers and family/friends (both 15.9%), received financial assistance (22.2%), and took other actions. Among respondents who took actions, most said that the conversation(s) had positively impacted the action. Respondents who spoke with an Information Specialist more than once were more likely to report positive impacts, including changing how they advocate for themselves/loved one and communicate with providers (both p < 0.05). Respondents diagnosed more recently were also more likely to report positive impact, including changing the way they communicate with providers (p < 0.05). Findings highlight the value of cancer helplines and suggest ways they can be most effective.

CN59 - Measuring the impact of the Irish Cancer Society’s cancer information services

BackgroundThe Irish Cancer Society is committed to monitoring the impact of our Cancer Information Services (CIS) at 4key stages (prevention, support, survivorship and palliative) to demonstrate the positive changes our services bring to the people affected by cancer. CIS incorporates Cancer Nurseline (freephone cancer helpline) and Daffodil Centres (walkin cancer information and support centres) based in cancer centres. Both are staffed by specialist cancer nurses. CIS provides support, advice and information to anyone affected by cancer. The information provided is tailored to the needs of each individual enquirer giving them greater access to cancer support and information which complements the service provided by the clinical teams in hospitals or in the community. In 2018 there were 47371 contacts to the service. MethodsImpact Monitoring uses surveys (paper and online) to collect information from service users. The nurses recruited cancer support enquirers over a two month period during September and October 2018. An enquirers’ distress level was assessed (using distress screening) by the nurse to determine if they were suitable to take part in the survey. Consent was obtained from participants across all services. Returned surveys were entered into a database and analysed according to themes and patterns. All respondents were anonymous. ResultsCIS had many positive impacts. Enquirers to the service appreciated the opportunity to access information from a healthcare professional either by phone or within a Daffodil Centre. During analysis some of the main benefits of the service identified include • Increased knowledge of cancer and its symptoms • More supported and aware of emotional supports • More in control • Reduced anxiety. Accurate and reliable information from a CIS healthcare professional offered reassurance to patients. ConclusionsHaving access to a cancer nurse through the CIS gave cancer patients the opportunity to avail of support, information and advice as and when they needed it. Enquirers felt they could talk through their questions and concerns, with the nurse providing information and guidance which reassured them. Talking to a nurse helped people feel more supported, more knowledgeable about their cancer and hopeful about the future. Legal entity responsible for the studyThe authors. FundingHas not received any funding. DisclosureAll authors have declared no conflicts of interest.

Specialist call handlers' perspectives on providing help on a cancer helpline: A qualitative interview study.

To identify call handlers' key experiences of providing telephone help on a cancer helpline. Semi-structured qualitative interviews with 30 call handlers from three UK-based cancer helplines. Transcribed interview data were analysed thematically. Thematic analysis identified three themes: (a) call handlers' perceptions of their role on the helpline, (b) challenges of working on a helpline and (c) the need for training/keeping up with competencies. Call handlers reported satisfaction with their experience. However, there are tensions: whilst advice is formally not part of the remit of the helpline, in practice the boundary between giving advice and giving information can be blurred. No follow-up with callers could be difficult and experienced as a lost opportunity to help. Managing patient expectations could be challenging, and interviewees described particular difficulties with distressed callers. Training for the role was commonplace, but there was sometimes a desire for more opportunities. There are challenges faced by helpline staff, and it can be difficult to manage callers' distress and expectations of what they might get from a call experience. Recognising the skill and complexity of the call handler role is important, as it is meeting call handlers' support and training needs. Support is important to minimise the risk to their own emotional well-being.

Web-Delivered Cognitive Behavioral Therapy for Distressed Cancer Patients: Randomized Controlled Trial.

BackgroundWeb-based interventions present a potentially cost-effective approach to supporting self-management for cancer patients; however, further evidence for acceptability and effectiveness is needed.ObjectiveThe goal of our research was to assess the effectiveness of an individualized Web-based cognitive behavioral therapy (CBT) intervention on improving psychological and quality of life outcomes in cancer patients with elevated psychological distress.MethodsA total of 163 distressed cancer patients (111 female, 68.1%) were recruited through the Queensland Cancer Registry and the Cancer Council Queensland Cancer Helpline and randomly assigned to either a Web-based tailored CBT intervention (CancerCope) (79/163) or a static patient education website (84/163). At baseline and 8-week follow-up we assessed primary outcomes of psychological and cancer-specific distress and unmet psychological supportive care needs and secondary outcomes of positive adjustment and quality of life.ResultsIntention-to-treat analyses showed no evidence of a statistically significant intervention effect on primary or secondary outcomes. However, per-protocol analyses found a greater decrease for the CancerCope group in psychological distress (P=.04), cancer-specific distress (P=.02), and unmet psychological care needs (P=.03) from baseline to 8 weeks compared with the patient education group. Younger patients were more likely to complete the CancerCope intervention.ConclusionsThis online CBT intervention was associated with greater decreases in distress for those patients who more closely adhered to the program. Given the low costs and high accessibility of this intervention approach, even if only effective for subgroups of patients, the potential impact may be substantial.Trial RegistrationAustralian New Zealand Clinical Trials Registry ACTRN12613001026718; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=364768&isReview=true (Archived by WebCite at http://www.webcitation.org/6uPvpcovl)

The uptake of cervical cancer control services at a cancer information service center in Lagos, Nigeria

Background: There is currently an increase in the incidence of cervical cancer in Nigeria and cancer information service (CIS) is now assuming an emerging role in cervical cancer control. Objectives: The objective of this study is to assess the uptake of the CIS program and also determine the rate of positive screening using visual inspection with acetic acid (VIA) as a screening modality among the female CIS users in Lagos. Materials and Methods: This was a cross-sectional study carried out over a period of 1 year (January to December 2015), using a health communications program (mHealth). An initial period of public awareness was carried out over a 3-month period after which members of the public were encouraged to call the cervical cancer helplines. Cervical cancer information was provided by the callers and data were recorded by information specialists during the study. Data analyses were carried out using Epi info version 7.2 and descriptive statistics were computed for all data. Association between outcome of VIA screening and previous cervical screening were tested using the Fisher's exact test. Statistically significant result was reported at P < 0.05. Results: An average of 33 calls per month, equivalent to 4.4 per 100,000 population in Lagos state, was received during the study. Of the callers referred for screening, only 16 out of the 301 (5.3%) that presented had positive VIA test. There was about 1.9 fold risk of testing positive to VIA screening among the previously unscreened women compared to those with previous cervical screenings (crude odd ratio – 1.87, 95% confidence interval – 0.99–3.05, P= 0.116). Conclusion: There is a significantly low uptake of the CIS in Lagos, and there is an even lower practice of cervical cancer screenings among the CIS callers. However, the rapid growth of mobile phone use in Nigeria still presents a unique opportunity that can be explored to improve cancer care.

Use of the Distress Thermometer in a cancer helpline context: Can it detect changes in distress, is it acceptable to nurses and callers, and do high scores lead to internal referrals?

To improve understanding about; (1) the validity of the Distress Thermometer (DT) as a measure of changes in distress after a cancer helpline call, (2) the impact of a helpline call on callers' distress, (3) caller and helpline nurses' comfort with use of the DT, and (4) the extent to which DT scores over the critical threshold, are associated with referral to internal support services for follow-up psychosocial care. Callers (people diagnosed with cancer and their family/friends: N=100) completed a questionnaire that included DT ratings (three time-points), the Depression Anxiety and Stress Scale-21 (DASS-21) and measures of comfort with the DT tool. Nurses recorded referrals to internal services and their comfort in using the DT in each call. The DT correlated with the DASS-21 depression (r=0.45, p<0.001), anxiety (r=0.56, p<0.001) and stress (r=0.64, p<0.001) subscales demonstrating validity. Callers' self-rated distress was significantly lower after the call, regardless of gender or caller type (F(2, 97)=63.67, p<0.01, partial eta squared=0.57). Over 74% of people diagnosed with cancer, 80% family/friends and 89.3% of nurses felt comfortable with DT use. Only 16% of participants were referred on to follow-up internal support services despite 90% of people with cancer and 75% of family/friends' DT scores' suggesting they required follow-up care. The DT is a valid and acceptable tool for use by cancer helplines. Improved documentation of referrals is required to better understand referral patterns.

A descriptive survey of cancer helplines in the United Kingdom: Who they are, the services offered, and the accessibility of those services.

There are more than 1500 UK health helplines in operation, yet we have scant knowledge about the resources in place to support the seeking and delivering of cancer-related telephone help and support. This research aimed to identify and describe cancer and cancer-related helpline service provision: the number of helplines available, the variety of services provided, and the accessibility of those services. This study used online national questionnaire survey sent to 95 cancer and cancer-related helplines in the United Kingdom. A total of 69 (73%) of 95 surveyed cancer and cancer-related helplines completed the survey. Most helplines/organizations were registered charities, supported by donations; 73.5% of helplines had national coverage. Most helplines served all age-groups, ethnic groups, and men and women. Only 13.4% had a number that was free from landlines and most mobile networks, and 56.6% could only be contacted during working hours. More than 50% of helplines reported no provisions for callers with additional needs, and 55% had no clinical staff available to callers. Ongoing support and training for helpline staff was available but variable. Although cancer helplines in the United Kingdom offer reasonably broad coverage across the country, there are still potential barriers to accessibility. There are also opportunities to optimize the training of staff/volunteers across the sector. There are further prospects for helplines to enhance services and sustain appropriate and realistic quality standards.

How calls from carers, friends and family members of someone affected by cancer differ from those made by people diagnosed with cancer; analysis of 4years of South Australian Cancer Council Helpline data.

The purpose of this study is to determine how people diagnosed with cancer who call the Cancer Council Helpline in South Australia differ from carers/family/friends (caregivers) who call. Descriptive, retrospective audit of calls from people who contacted Cancer Council Helpline in South Australia between 16 April 2009 and 16 April 2013 who were diagnosed with cancer (n=5766) or were the caregivers (n=5174) of a person with cancer. Caregivers were more likely to be female (p<0.001); younger in age (p<0.001); call regarding cancer that was metastasised/widespread/advanced, terminal or at an unknown stage (p<0.001) and phone requesting general cancer information or emotional support (p<0.001). This group was more distressed (p<0.001) but less likely (p=0.02) to be offered and/or accept referrals to counselling than people diagnosed with cancer who called. Follow-up care was required by 63.5% of caregivers and 73.1% of people with cancer according to distress management guidelines; 8.5 and 15.3%, respectively, accepted referrals to internal services. The most frequently discussed topic for both groups was emotional/psychological concerns. There were no differences in remoteness of residence or call length between groups. Caregivers represented different demographic groups than people diagnosed with cancer who called this helpline. The two groups phoned for different issues, at different stages of disease progression, displayed different levels of distress and, therefore, may benefit from services being tailored to meet their unique needs. These results also demonstrate the capacity of helplines to complement other health services and confirm that callers to cancer helplines exhibit high levels of distress.

Economic evaluation of a psychological intervention for high distress cancer patients and carers: costs and quality-adjusted life years.

This study compared the cost-effectiveness of a psychologist-led, individualised cognitive behavioural intervention (PI) to a nurse-led, minimal contact self-management condition for highly distressed cancer patients and carers. This was an economic evaluation conducted alongside a randomised trial of highly distressed adult cancer patients and carers calling cancer helplines. Services used by participants were measured using a resource use questionnaire, and quality-adjusted life years were measured using the assessment of quality of life - eight-dimension - instrument collected through a computer-assisted telephone interview. The base case analysis stratified participants based on the baseline score on the Brief Symptom Inventory. Incremental cost-effectiveness ratio confidence intervals were calculated with a nonparametric bootstrap to reflect sampling uncertainty. The results were subjected to sensitivity analysis by varying unit costs for resource use and the method for handling missing data. No significant differences were found in overall total costs or quality-adjusted life years (QALYs) between intervention groups. Bootstrapped data suggest the PI had a higher probability of lower cost and greater QALYs for both carers and patients with high distress at baseline. For patients with low levels of distress at baseline, the PI had a higher probability of greater QALYs but at additional cost. Sensitivity analysis showed the results were robust. The PI may be cost-effective compared with the nurse-led, minimal contact self-management condition for highly distressed cancer patients and carers. More intensive psychological intervention for patients with greater levels of distress appears warranted. Copyright © 2015 John Wiley & Sons, Ltd. Copyright © 2015 John Wiley & Sons, Ltd.

Hope on the line

Award-winning nurse Paula Madden brings three decades of experience to the UK’s only nurse-led bowel cancer helpline, run by the support and campaigning charity Beating Bowel Cancer. She speaks to Clare Lomas about how she got involved, and how she is aiming to make a difference for bowel cancer patients who often lack ongoing support

Abstract A21: Developing a model for engaging underserved breast cancer survivors: Expanding a financial assistance program to include support and education

Abstract Background: Living Beyond Breast Cancer's grant assists with the financial hardship of breast cancer treatment. Since 2006, the grant has funded more than 1,200 women by paying household bills. $1.1 million has been distributed in the Philadelphia region. 90% of recipients earn less than 300% of the federal poverty line; 63% are women of color. A 2010 needs assessment indicated that recipients were unfamiliar with LBBC's programs and had limited interactions with the organization. Personal and financial crises made seeking information and support a low priority. Methods: Interventions developed increase contact time with recipients and provide personalized invitations to other LBBC education and support programs. Applicants receive a peer support phone call from an LBBC Breast Cancer Helpline volunteer to share information about upcoming programs and refer to resources to meet their needs. Special invitations to recipients offer registration fee waivers to LBBC conferences and invite them to tailored programs for low-income families. Results: 65% of applicants were previously unaware of Living Beyond Breast Cancer and its programs. All applicants receive 10-20 minutes of phone peer support and invitations to two local programs. Applicants receive breast cancer publications on topics related to their concerns or experience. A nutrition-on-a-budget series was piloted in 2013 to address recipients' other wellness needs and provide meals. 14 women participated and reported that the program increased their knowledge of other nutrition resources available and increased their likelihood of using other LBBC services. Conclusions: A financial assistance program provides a unique opportunity to engage underserved breast cancer survivors who may not otherwise seek support and education from an organization. The addition of peer support interventions helps assess and alleviate other concerns and connects recipients to a support system that they can access throughout their experience. These interventions can act as a model for other regional and national grant programs. Citation Format: Catherine Creme Henry, Arin Ahlum Hanson, Janine Guglielmino. Developing a model for engaging underserved breast cancer survivors: Expanding a financial assistance program to include support and education. [abstract]. In: Proceedings of the Seventh AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 9-12, 2014; San Antonio, TX. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2015;24(10 Suppl):Abstract nr A21.

Closing calls to a cancer helpline: Expressions of caller satisfaction

ObjectiveThis study provides an alternative approach to assessing caller satisfaction focussing on how callers express their appreciation of the service provided during the call, as the calls draw to a close. MethodsConversation analysis is used to analyse 99 calls between callers and cancer specialist nurses on a leading cancer helpline in the UK. ResultsCaller satisfaction is expressed through upgraded forms of the appreciations through which callers begin to close the call. Dissatisfaction is conveyed in what are by comparison with expressions of satisfaction, downgraded forms which acknowledge but do not fully or enthusiastically appreciate the information/advice given. With latter calls, nurses begin to ‘re-open’ aspects of information/advice giving, thereby leading to more protracted call closings. ConclusionEndogenous indicators of caller satisfaction are displayed through callers’ upgraded appreciations in the closing moments of helpline calls. Difficulties in terminating calls (protracted by nurses re-opening information-giving etc.) arise when callers do not convey their satisfaction with the service provided. Practice implicationsAn understanding of endogenous indicators of satisfaction may benefit helpline organisations and further their understanding of effective call-handling, particularly through identifying the features common to those calls in which callers do not display their satisfaction with the call.

Level of frailty can indicate how long older patients may survive

Telephone helplines, whose staff provide practical instruction, information and emotional and social welfare support to patients with cancer, are common across the western world. When evaluated, such services achieve high levels of caller satisfaction. However, most evaluation methods do not measure the effect on psychosocial wellbeing. In this systematic review, researchers from Australia examined 28 papers, and extracted and evaluated data on the characteristics of users, call content and satisfaction. The researchers concluded that most of the studies tended to be descriptive and that there is a lack of robust research evidence for the effectiveness of such services and how and whether such resources improve user outcomes. They advocate the development of more rigorous means of evaluating the efficacy and efficiency of such services. Clinton-McHarg T, Paul C, Boyes A et al (2014) Do cancer helplines deliver benefits to people affected by cancer? A systematic review. Patient Education and Counseling. 97, 3, 302-309.

More evidence needed on efficacy of helplines for cancer callers

Telephone helplines, whose staff provide practical instruction, information and emotional and social welfare support to patients with cancer, are common across the western world. When evaluated, such services achieve high levels of caller satisfaction. However, most evaluation methods do not measure the effect on psychosocial wellbeing. In this systematic review, researchers from Australia examined 28 papers, and extracted and evaluated data on the characteristics of users, call content and satisfaction. The researchers concluded that most of the studies tended to be descriptive and that there is a lack of robust research evidence for the effectiveness of such services and how and whether such resources improve user outcomes. They advocate the development of more rigorous means of evaluating the efficacy and efficiency of such services. Clinton-McHarg T, Paul C, Boyes A et al (2014) Do cancer helplines deliver benefits to people affected by cancer? A systematic review. Patient Education and Counseling. 97, 3, 302-309.

Sleep disturbance in cancer patients and caregivers who contact telephone-based help services.

Insomnia is highly prevalent in people who are affected by cancer. However, options available to receive support for insomnia are limited. Telephone-based help services, such as cancer helplines, may be ideally placed to meet unmet needs regarding insomnia after cancer. The present study describes the prevalence and predictors of insomnia in patients and caregivers who call cancer helplines seeking support. Participants (N = 500 patients, N = 234 caregivers) were recruited through an Australian state-based telephone-delivered cancer helpline. In addition to routine screening with the Distress Thermometer, participants were administered the Insomnia Severity Index. Most participants were female, older than 50 years of age, and were three (caregivers) to four (patients) months post-diagnosis. Insomnia symptoms were reported by 59.4 % of patients and 62.9 % of caregivers, with moderate to severe levels of insomnia reported by 27 % of patients and 30 % of caregivers. Insomnia was predicted by distress level for both patients (β = .31, p < .001) and caregivers (β = .32, p < .001) and age for patients only (β = -.13, p < .01). Insomnia symptoms are common in patients and caregivers who call cancer helplines and appear to be related to distress. Telephone-based helplines have the potential to act as the first line of support in a stepped care approach addressing insomnia.

The Role of Helplines in Cancer Care: Intertwining Emotional Support with Information or Advice-Seeking Needs

Helplines are core feature of the contemporary U.K. health care system, however little is known about callers’ experiences of seeking cancer-related telephone help. Qualitative interviews were conducted with 32 cancer helpline callers. The findings suggest cancer helplines offer callers (1) time to discuss their issues, (2) anonymity, (3) convenience, and (4) an open outlet for anyone affected by cancer including family/friends. Further, the findings highlighted that callers’ help-seeking behavior was multifaceted, with their psychosocial needs being intrinsically intertwined with their information or advice-seeking needs. The implications are discussed in relation to the role of cancer helplines in the healthcare system.

A Telephone Helpline Assessment of Psychosocial Needs of Adults with Cancer Post Institute of Medicine (IOM) Recommendations

Objective: To explore whether the 2007 IOM recommendations had an impact on the reasons for calls to a cancer telephone helpline and determine the major reasons for calls at two different time periods after the 2007 recommendations. Methods: Caller data with identifiers removed were extracted from a cancer helpline database. Baseline data included calls made to the helpline between April 2, 2008 and September 2, 2009 (Period 1). Then, a second data set was built from data collected between September 3, 2009 and May 2, 2011 (Period 2). Results: The major reasons for calls to the cancer telephone helpline during the two different time periods were the same: financial assistance, helpline services information, coping assistance, support groups, and questions related to treatment. Four of the top five reasons were non-treatment related (i.e., financial issues, helpline services information, coping, and support). Conclusions: The nature of calls to the helpline suggests that the financial and psychosocial needs of people with cancer are not being addressed by healthcare providers. Practice implications: The new “normal” for cancer care includes decisions about complex care coupled with new regulatory and financial constraints. This underscores the importance of focused planning of cancer care across multiple care settings in order to ensure continuity of care for the whole person.

Delivery of telephone-based supportive care to people with cancer: An analysis of cancer helpline operator and cancer nurse communication

ObjectivesTelephone-based supportive care presents a potentially highly accessible means of addressing unmet supportive care needs for people with cancer. Identification of behaviours that facilitate communication is essential for development of training for telephone-based supportive care. The aim of this study was to describe communication behaviours within supportive care telephone calls in two contexts (1) a telephone outreach intervention and (2) cancer helpline calls, to identify potential areas for further training. Methods50 recorded calls were analysed using two standardised coding systems: the RIAS and Verona-CoDES-C. ResultsMean call length was 21min (304 utterances) for nurse-outreach calls and 23min (355 utterances) for helpline calls. Closed questioning, verbal attentiveness and giving information/counselling were the most common communication behaviours identified. Emotional cues were most commonly responded to through non-explicit back-channelling, exploration of content or provision of reassurance or advice. ConclusionsThis study confirmed the need to address the manner in which questions are framed to maximise patient disclosure. Responding to patent emotional cues was highlighted as an area for future training focus. Practice implicationsCommunication skills training that addresses each of these tasks is likely to improve the effectiveness of telephone-based delivery of supportive care.