Screening for psychological distress in follow-up care to identify head and neck cancer patients with untreated distress

Psychosocial care is increasingly recognised as an integral part of quality cancer treatment [1]. In the Netherlands, government policy statements, various cancer specific guidelines, reflect broad scientific and societal support for a structured, integrated approach to psychosocial care for cancer patients [2, 3]. Although there is evidence that psychosocial care is effective [4‐6], referral rates are low [7, 8], and many patients have unmet needs, related to e.g. fatigue, sexuality issues and life stress [9‐11]. The identification and support of cancer patients with psychological distress is a challenge [10, 12], especially in head and neck cancer (HNC) patients as they do not usually express their emotions spontaneously in front of the oncologists. One of the main barriers to deliver psychosocial cancer care in cancer patients is lack of screening for psychological distress in clinical practice to identify patients [13‐16].

Fitch [15] stated that the need for identifying psychological distress is clear and there are suitable patient reported outcome measures (PROMs) available to perform this screening. The Distress Thermometer with the accompanying problem list is often used for assessment of each patient’s unique needs [3, 17]. Other tools have emerged as well, such as Viewpoint [18], SupportScreen [19], ESRA-C [20], and CHES [21]. At the Department of Otolaryngology-Head and Neck Surgery of VU University Medical Center, efficient screening for distress followed by triage to care has become available in 2006 by a touch screen computer system (OncoQuest) that was implemented in routine clinical practice [7, 22, 23]. Via OncoQuest, patients complete quality of life (HRQOL) questionnaires (EORTC QLQ-C30 and condition-specific modules such as the EORTC QLQ-H&N35) and the Hospital Anxiety and Depression Scale (HADS) [23]. OncoQuest is linked to the hospital patient information system. Data are processed in real-time and a care coordinator (a nurse specialised in HNC) can view the results by clear graphics on a computer in the consulting room and discuss these with the patient. In this prospective surveillance model, HRQOL can be repeatedly monitored and changes can be assessed; physical impairment, functional limitations and psychosocial distress can be identified in an early stage, information and psychoeducation can be provided, and, if necessary, supportive care including rehabilitation, psychosocial care and healthy lifestyle programs can be introduced.

Several studies have shown that using PROMs facilitates communication about patients’ symptoms, functioning and distress between doctors, nurses and patients [16]. However, an international debate has emerged concerning screening for psychological distress in clinical practice with authors with solid arguments in favour of screening [12, 16, 24‐27] and other authors with valid arguments against it [28‐30]. For instance, Palmer et al. [29] reported that 36 % of recently diagnosed breast cancer patients with elevated distress or a psychiatric disorder already received psychotropic medication. The authors argued that because of this relatively high percentage, screening all breast cancer patients is therefore not very effective. However, information on patients with other types of cancer is scarce, which hampers the discussion on pros and cons of screening for distress in clinical practice.

The aim of this study is to investigate screening in follow-up care to identify HNC patients with untreated psychological distress. Furthermore, sociodemographic and clinical factors and HRQOL outcomes will be investigated that may be associated with untreated psychological distress.

The present study revealed that among HNC patients, screening for distress is valuable because of the patients who screened positive for psychological distress (29 %); the majority (82 %) did not yet receive treatment. This percentage of patients with untreated distress is much higher compared to 64 % among newly diagnosed breast cancer patients as reported by Palmer et al. [29]. Therefore, and because two thirds of patients who screen positive may develop a full-blown depression if left untreated [37], we disagree with Palmer et al. and conclude that screening for distress is beneficial among HNC patients. Our conclusion supports the findings of Kotronoulas et al. [38], who reported in their recent review that routine use of PROMs increases communication about patient outcomes during consultations and that PROMs are associated with improved symptom control, increased supportive care, and patient satisfaction.

Receipt of psychological or psychiatric treatment was significantly related to a higher score on the HADS total scale, a lower (worse) score on the EORTC QLQ-C30 scale emotional functioning, a higher (worse) score on fatigue and problems with sexuality, and on the EORTC QLQ-H&N35 scales oral pain and speech problems. An explanation for these findings might be that patients with more severe problems are more inclined to seek help. But also, these patients might be detected easier by caregivers during follow-up consultation and therefore are referred to supportive care earlier. Carlson et al. reported that full screening (online use of PROMs with a personalised printout of results and a list of contact details of services to help with the identified problems) and triage to care (full screening plus the opportunity to speak with a care professional who could refer to services directly) both result in the most benefit for lung cancer patients, compared to screening alone. Fewer patients in the triage group reported a problem with coping (12.9 %) compared with patients in the minimal (23.9 %) and full (26.9 %) screening groups [26]. Mitchell concluded that screening for distress and monitoring HRQOL in clinical practice is likely to benefit communication and referral for psychosocial help, and that, it has the potential to influence patient well-being but only if barriers are addressed [16]. However, understanding about the complexities of implementing screening programs is still unfolding [15]. In earlier studies, it was argued that incorporating PROMs in clinical practice should aim at equipping health professionals to use patient PROMs data in managing patients, should employ more condition-specific (rather than generic) PROMs, should improve the interpretability of the PROM data feedback to both medical staff and patients, and should support patients to improve their self-efficacy to manage illness-related issues [39]. Recently, key barriers were identified as lack of training and support, low acceptability, and failure to link treatment to the screening results [16]. Also, further implementation research is needed to advance knowledge about the most effective strategies in the context of cancer care [27].

A limitation to our study is that we missed information about the receipt of psychosocial care for 10 % of the participating HNC patients because they could not be reached. However, these patients had mainly borderline HADS scores and additional information about referral to psychological services was not present in their medical dossiers. Therefore, these patients are suspected to not have received any psychosocial treatment. Another limitation of the study is that we do not know whether patients, who did receive treatment, did so as a result of distress screening or whether they already received such treatment. Furthermore, we do not know how many patients, who did not receive psychological treatment or psychiatric treatment (82 %), had unmet psychological care needs. Based on earlier research [40, 41] and clinical practice, our estimation is that many patients with psychological distress do not want to be referred to psychological care. This was the main reason to start a trial on stepped care in which patients are offered low-intensity interventions like self-help first, before being referred to a psychologist or psychiatrist [42]. Although OncoQuest is valued by the coordinating nurse and by patients, not all eligible patients make use of OncoQuest, which may have resulted in selection bias. A mixed method study including qualitative and quantitative research measures is ongoing and will provide detailed insight into possible barriers and facilitators enabling optimization of OncoQuest. In their randomised clinical trial, Carlson et al. [43], examining the impact of screening for distress followed by personalised triage versus computerised triage, concluded that the best model of screening may be to incorporate personalised triage for patients indicating high levels of depression and anxiety while providing computerised triage for others. Further research is needed on best-practice approaches for implementing sustainable and acceptable screening for distress and triage programs in clinical settings.

Screening for psychological distress among HNC patients is beneficial to identify patients with psychological distress who do not yet receive treatment. Via OncoQuest, a broad spectrum of HRQOL is monitored (EORTC QLQ-C30 and QLQ-HN35 module), enabling identification of not only psychological distress but also of other problems.