In addition to morbidity rates, the impact of health-related quality of life (HrQoL) has grown in cancer treatment [1]. Medical research shows a continual improvement in early detection and treatment of cancer [1]. Subsequently, there are more long-term survivors, though patients often suffer from the consequences of cancer and its treatment [2]. Assuming that cancer has become a chronic disease for many patients, the HrQoL of cancer patients needs further attention in routine procedures [3].

Cancer patients’ role (eg, in a family or group of friends), their relationship to their spouse, and their social life can be affected by psychological impairments [4,5]. Also, the perceived existential threat to the integrity of patients can have a psychological impact [4]. As a consequence, psychosocial distress, as well as psychological comorbidities (ie, anxiety and depressive disorders) can occur or be amplified during or after treatment [6].

Symptoms of cancer are more or less distinct, depending on the cancer entity [7]. Prostate carcinoma, for example, depicts a symptom-free course for months or years in most cases [8]. On the other hand, pituitary tumors can affect the life of the person immensely [9]. Cancer patients often experience severe side effects due to their treatment such as pain, fatigue, weak immune system, indigestion, sexual dysfunction, nausea, or hair loss [10]. Correspondingly, the negative impact on the patient’s HrQoL can be significant [5], which emphasizes the importance of focusing on HrQoL in clinical practice and research.

In the 1990s, HrQoL was established as an essential part of cancer treatment, and since then it has existed alongside disease-related outcomes [3]. Furthermore, HrQoL can be used to evaluate treatment in cancer patients [11]. At present, HrQoL is used as a parameter for benefit-cost analysis [12], assessing which limitations in quality of life can be endured in exchange for prolonged life. HrQoL proves to be an aspect of patient-reported outcomes (PROs) since information given by the patients themselves [12] is the best source from which state of health can be adequately assessed [11]. This highlights the importance of integrating PROs, and thus HrQoL, into patient-centered care since they have been proven to be more reliable than the clinician’s assessment; they can also aid with earlier symptom identification [13]. Therefore, PROs should be implemented into clinical practice to improve screening of distress, optimize treatment, and measure quality of care [14-20].

The question that is raised is whether HrQoL impairment in a patient is taken into account in cancer treatment. Time is a scarce resource for medical staff and has to be spent carefully [21]. Although patient-centered care, including HrQoL, is eminent and part of the German National Cancer Plan [22], there is currently no sufficient resource-oriented procedure to measure, analyze, interpret, or act upon HrQoL data [23]. Even though there already exists questionnaires to measure HrQoL in oncological patients, the complexity and time-consuming nature of these assessments prevent use in clinical routine. An example of a PRO questionnaire is the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C30 (EORTC QoL-C30) [24]. It is a highly recommended tool for the measurement of HrQoL in cancer patients [25]. Since it comprises eight scales, several additional single items, and disease-specific modules, it is not practical for use during routine procedures [26]. Oncological patients are generally older and should be questioned several times over the course of treatment; therefore, a long questionnaire like the EORTC QoL-C30 depletes more capacity than available for both patients and practitioners [27]. These difficulties also occur with other instruments (eg, Functional Assessment of Cancer Therapy [Fact-G] [28], World Health Organization Quality of Life [WHOQOL] [29]) and result in insufficient integration of PRO measurements in clinical routine procedures [27].

This issue can be improved by implementing measurements that are shorter, more adaptive, and prompt action. For example, the Distress Thermometer (DT) is short, which makes it a more applicable instrument [30]. Developed by the National Comprehensive Cancer Network (NCCN), this screening tool determines the type and extent of psychosocial distress in oncological patients. Though it does not measure all aspects of HrQoL, it is often used in clinical practice to screen for need of support and shortages in a patient’s HrQoL. It consists of an 11-step analogue scale from 0 to 10 to measure distress, and a list of problems. However, the NCCN-DT is only used in screening procedures [30] and misses relevant dimensions of HrQoL such as physical complaints and autonomy [31]. Including its list of problems, the NCCN-DT amounts to 36 items, which is a problematic length for a questionnaire used in routine care [27]. Due to its high feasibility [30], however, the NCCN-DT is able to function as a first step in the development of a reliable and adequate instrument in assessing HrQoL in oncological patients.

Hence, there are no suitable short instruments to measure HrQoL in oncological patients for use in clinical routine care. The present study is the first part of a larger project that ultimately targets the implementation of PROs in cancer care clinical practice at the University Medical Center Hamburg-Eppendorf. The aim of this study is to develop a psychometrically validated short instrument with six visual analogue scales with one item each, for repeated measurement of HrQoL of oncological in- and outpatients generalized for all cancer entities. Use of the new instrument in clinical practice is expected to improve patient-centered care, as well as data management for continuous health care research.

This project is funded by Innovationsfond des Gemeinsamen Bundesausschusses (grant number: 01VSF16024). Recruitment was completed in February 2019.

So far, 32 interviews, 5 focus groups, and 1 expert discussion have been conducted. On the grounds of the qualitative analyses of the obtained material, six dimensions with 10 items were identified. After study phase II (n=630) and psychometrical analyses, the newly developed questionnaire (HELP-5 [Hamburger Inventar zur Erfassung von Lebensqualität bei onkologischen Patienten]; English translation: Hamburg Inventory for Measuring Quality of Life in Oncological Patients), comprising five dimensions with one item each to measure HrQoL in all cancer patients in routine care, was finalized. The first results of both study phases are expected to be submitted for publication by the end of 2020.

HrQoL is of vast importance for cancer patients. In the context of improving oncological patient-centered care, continuous PRO monitoring represents an important addition to current routine care to identify and address patients’ needs [40,41]. As patients are highly affected by their disease and its treatment, tools for measuring HrQoL need to be a permanent feature of routine care. At present, instruments measuring HrQoL do not match the requirements of routine care (ie, brevity, adaptiveness, simplicity). The questionnaire developed in this study should be able to meet the above-mentioned requirements. With five to six dimensions and one item per dimension, the developed questionnaire is short enough to not disrupt routine procedures during treatment but is profound enough to inform clinicians about the patient’s impairments and course concerning HrQoL.