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?

Highlights

• The Distress Thermometer is a valid measure of distress for use by cancer helplines.

• The majority of callers and cancer nurses were comfortable with use of the Distress Thermometer.

• Callers' self-rated distress was significantly lower after calling a cancer helpline.

Abstract

Purpose

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.

Methods

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.

Results

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.

Conclusions

The DT is a valid and acceptable tool for use by cancer helplines. Improved documentation of referrals is required to better understand referral patterns.

Introduction

Psychological distress is now considered the ‘sixth vital sign’ to be monitored in cancer care, along with temperature, respiration, heart rate, blood pressure and pain (Carlson et al., 2012). Distress in the context of cancer has been defined as “a multifactorial, unpleasant experience of an emotional, psychological, social or spiritual nature that interferes with the ability to cope with cancer, its physical symptoms, and its treatment” (Holland and Bultz 2007, p.1). It affects the person who experiences cancer as well as their family and friends (Matthews et al., 2003, Lin et al., 2014). Psychosocial interventions that aim to address this distress may be provided at all points of the cancer trajectory (i.e. at initial diagnosis, treatment, survival, palliation or after bereavement) and they can incorporate both ongoing distress tracking and management (Fawzy, 1999). Traditionally, cancer-specific psychosocial interventions for cancer patients have been provided face-to-face (Bowen, 2010). However, due to cost, time and their broader reach, telephone-based services (often called ‘helplines’) are increasingly important sources of psychosocial information and support, primarily because patients are receiving more of their treatment as outpatients and spending less time in hospitals (Guadagnoli and Mor, 1991). These changes to treatment delivery also mean that family members are playing an increasingly complex role in cancer care, often face new and unfamiliar caring responsibilities at home (Guadagnoli and Mor, 1991), and need remote access to information and support.

Cancer helplines provide information, supportive counselling and psychosocial triaging to callers who are impacted by cancer directly or indirectly, regardless of cancer type, stage or prognosis (Harvey et al., 2013). They are typically staffed by oncology-trained nurses. An increasing number of studies suggest that cancer support services delivered by telephone are efficacious and effective in addressing the needs of these groups (Beaver et al., 2006, Livingston et al., 2006, Steginga et al., 2008) and are accessible, convenient, and anonymous (Livingston et al., 2006, Hawkes et al., 2010, Leahy et al., 2013, Lin et al., 2014).

Previous research has highlighted the importance of distress identification and subsequent triaging being carried out on helpline calls (Hawkes et al., 2010, Hughes et al., 2011). Screening for distress at call outset is now considered critical, and guidelines suggest that screening needs to occur in a standardised and supportive way (Snowden et al., 2011). A brief screening tool, the Distress Thermometer (DT), has been recommended for this purpose. The DT is a single question used to identify the level of distress that clients have experienced in the past week (National Comprehensive Cancer, 2003). Clients are asked to report their distress from 0 (no distress) to 10 (extreme distress). Cancer patients and survivors with DT scores ≥4, and family/friends with scores ≥6 require further assessment and support according to Hawkes et al.’s (2010) guidelines.

Most research on the DT to date has focused on the validity of the DT compared to other measures of psychological distress (Snowden et al., 2011) but there has been little effort to ensure that the measure is sensitive enough to detect changes in distress before and after helpline calls, or whether call efficacy varies with caller type (patient, survivor, family, friend) or by caller gender. Moreover, some concerns have been raised about the potential poor acceptability by call centre staff and the discomfort of cancer nurses using the DT measure (Hughes et al., 2011, Meijer et al., 2013, Chambers et al., 2014). It is thought that staff reluctance to use the tool may arise from nurses' lack of knowledge and confidence in its use (Mitchell et al., 2008), time constraints, or the belief that the caller's enquiry did not fit with distress screening (e.g. caller ringing for specific service information) (Hughes et al., 2011). Barriers to use by nurses require further examination (Mitchell et al., 2012a, Mitchell et al., 2012b). Similarly, little is known about how comfortable callers feel when asked to rate their distress. .

This study aimed to determine (1) the validity, sensitivity and acceptability of the DT as a method of measuring change in distress following contact with a cancer helpline, (2) the impact of calling a cancer support helpline on callers’ recollected levels of self-reported distress as measured by the DT (and whether or not there are differences between genders and caller types), (3) the extent to which callers and cancer helpline nurses are comfortable with use of the DT, and (4) how frequently callers who score over recommended referral thresholds are referred to follow-up, internally sourced support (i.e. counselling, financial, practical or legal assistance programs).