Content comparison of unmet needs self‐report measures used in patients with head and neck cancer: A systematic review

Abstract

Objective Morbidity from head and neck cancers (HNCs) and their treatment are significant, given their proximity to anatomical sites impacting facial appearance and function. Assessing the needs of HNC patients throughout their cancer journey is critical to informing quality care and improving quality of life. We aimed to identify available unmet needs measures in the HNC setting and appraise their content and psychometric properties. Methods We conducted a systematic search of five electronic databases (July 2007‐July 2019) to identify studies of unmet needs in patients with HNC. In addition, three web‐based patient‐reported outcome measures (PROMs) databases were searched for unmet needs measures. Citations were screened for eligibility and identified measures reviewed for content coverage and psychometric properties. From identified measures and literature, a conceptual framework with 12 clinically relevant aspects of unmet needs was developed and used to assess the conceptual coverage of available unmet needs measures. Results Literature search identified 273 records of which 28 studies assessing unmet needs in HNC cancer met eligibility criteria. Seven unmet needs measures were identified from retrieved studies and seven additional measures from PROM databases. Thus, 14 measures in total were reviewed. Content mapping revealed that three measures demonstrated excellent content validity (greater than 80% conceptual coverage): Patient Concerns Inventory (PCI), Needs Assessment for Advanced Cancer Patients (NA‐ACP), and James Supportive Care Screening (JSCS). Conclusion We recommend PCI be used to measure unmet needs in the HNC setting considering the importance of content validity over quantitative psychometric properties.

Can post-treatment oral cancer patients’ concerns reflect their cancer characteristics, HRQoL, psychological distress level and satisfaction with consultation?

“…In recent years, patient-reported outcome measures (PROMs) [26,27] and question prompt lists (QPL) [28] have been of increasing interest to clinicians. The premise is that the patients' experiences and concerns can be used as indicators of their overall well-being and coping ability with their disease and treatment received [29].…”

“…These specific needs are substantial amongst oral cancer patients as they are mostly affected due to the disease and treatment impact on their dental and eating functions. If these needs are neglected, it could lead to negative outcomes [27]. Currently, no other prompt list addresses dental needs except the Patient Concerns Inventory for head and neck cancer (PCI-H&N) [27,32].…”

“…If these needs are neglected, it could lead to negative outcomes [27]. Currently, no other prompt list addresses dental needs except the Patient Concerns Inventory for head and neck cancer (PCI-H&N) [27,32].…”

The role of the Head and Neck cancer-specific Patient Concerns Inventory (PCI-HN) in telephone consultations during the COVID-19 pandemic

“…7,8 A recent systematic review and content comparison of unmet needs self-report measures used in patients with head and neck cancer favoured the PCI compared to 13 other tools. 9 Although designed to be used in electronic format 10 it has been used as one sheet paper version and the responses using this method are reported in a 19-unit international study. 11 During this crisis there is potential merit for members of the head and neck team in using the PCI-HN (Appendix-1) as part of a telephone review consultation.…”

The After Diagnosis Head and Neck cancer-specific Patient Concerns Inventory (HaNC-AD) as a pre-treatment preparation aid during the COVID-19 pandemic

“…In the head and neck oncology setting, the HaNC-AD PCI [4] encompasses a comprehensive item prompt list covering several broad domains pertinent to patients with a diagnosis of cancer to the head and neck ("Appendix 1"). It is based on the same principle as the PCI-HNC [5] and in a recent systematic review [6] and content comparison of unmet needs self-report measures favoured the PCI over 13 other tools. This is a patient-reported tool, specifically designed for head and neck cancer patients, completed by patients following diagnosis prior to treatment that can facilitate discussion with the wider multi-professional team.…”